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Julie  Stachowiak, Ph.D.

Bioness - Treatment for Foot Drop in Multiple Sclerosis

By February 3, 2009

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Foot drop, for anyone who doesn't know, is a symptom of multiple sclerosis, in which it is difficult to lift the front part of your foot. Sound like a minor problem? Try walking or driving with foot drop. In fact, foot drop can lead to a huge decrease in quality of life and an increase in disability. In multiple sclerosis, foot drop occurs because the message from the brain to "lift" doesn't make it all the way to the foot. The foot itself is just fine, just waiting for "orders."

Bioness has designed and released a device that bypasses the brain. By putting a sensor on a shoe, the device "knows" what the foot should be doing when someone is walking. The device then signals a second device, strapped to the calf, that has the ability to stimulate the nerves and cause the muscles in the calf to "operate" the foot.

I can't endorse the product outright, but this seems like a very plausible way of dealing with foot drop and I am encouraged that there are developments in the treatment of multiple sclerosis symptoms. Devices cost around $7,000 and right now I have no idea if insurance would cover that cost.

Find out more from the Bioness website.
Comments
February 3, 2009 at 11:27 am
(1) Ken says:

Wow, that product looks really cool! Will have to look into that, but I’m pretty sure our insurance won’t cover it :(

February 3, 2009 at 7:20 pm
(2) Jonna says:

Thanks to my friends with Bioness I was told about this blog. The Ness L300 has given me a piece of my life back. I call it my bionic leg. Unless things have changes the cost is $6200. I know that there are some insurances that help with the device. I know that if your insurance doesn’t help with the cost Bioness does have a payment program. You can go on their web site bioness.com to get the phone number. If you have questions you can call (800)211-9136 and talk with someone in customer service to get more information. One of the great thins about the Ness L300 you don’t have to buy it without know that it is going to work for you. In my case I use it in physical therapy for 2 months, then rented the device and then I bought it. The money I used when renting the unit went towards the final cost.

February 3, 2009 at 11:58 pm
(3) Jonna says:

It’s me again, I can see that I was rushing things on my last entry. I was pressed for time to get to bowling:-) I am not sure if you have looked at the bioness web site, and seen the segment from the Today show. If you haven’t seen it you should check it out. You will learn a little more about the Ness L300 and see my story. If you have questions I will be checking in on this blog and will do my best answering questions.

February 4, 2009 at 4:31 pm
(4) Mark W. says:

Wow !!! Sure would be nice to give the poor toes a rest. I have been stubbing them into everything from throw rugs to just plain catching them against the floor. Does this device allow you to a least trot along? I walk fair but can’t even go as far as a slow jog. Running is only in my dreams. I would like to put this on my wish list. Peace and Health Mark

February 5, 2009 at 9:10 am
(5) Sandy says:

jonna-i saw your segment on the today show. the ness l300 looks like a dream come true! i use to be very active, playing tennis, hiking, walking, biking. ms has prevented me from doing things i loved doing. i would LOVE to run w/ my kids! what are the side effects of the ness l300? are there any long term problems associated w/ using it? how long safter you start using it, are you able to start walking etc ‘normally’?
thanks, i would love to hear more about this device.
sandy

February 6, 2009 at 1:06 pm
(6) Dan says:

There was a segment on the Today show that a woman has used this device for 2 years and she looked great. I am going to an evaluation in 2 weeks to see if it will work for me. If it works, it is worth the expense for sure! Here is a link to the story
http://www.msnbc.msn.com/id/21134540/vp/28872531#28872531

February 6, 2009 at 1:33 pm
(7) Sandy says:

dan–the woman on the today show was named jonna & i believe she wrote comment #2 & #3 on this blog. i am going for an evualation to use it next tuesday. i am so excited! i have had ms for over 18 years & this device is just what i need!!
sandy

February 6, 2009 at 5:23 pm
(8) Jonna says:

Mark I would encourage you to get evaluated for the L300. Go online to bioness.com and they have a facility finder to help you find something that is close to you. I am not able to run like I once did but it is great being able to jog for at least a short distance. If I need to get across a parking lot quickly I can do it and so it without tripping, stumbling or hiking my hip to clear my toes from the ground. I didn’t get to this point over night, it took time and dedication.

February 6, 2009 at 5:47 pm
(9) Rob says:

Jonna

I also enjoyed your Today segement.

Were you able to lift your knee enough to clear the toes better after using the L300 or have you noticed any change?

February 6, 2009 at 5:50 pm
(10) Jonna says:

Sandy, I haven’t had any problems with the Ness L300. Sure when I first started using it to walk longer distances and using it in the training mode the muscles in my lower leg got sore. Let me explain what I mean by training mode. With the remote control you can turn the unit on to have it stimulate the muscles in you lower leg to bring you foot up and then it goes off and you leg goes back to being relaxed. I use to sit at my desk, have my leg propped up and the train mode on. I was telling Mark about the facility finder on the web site bioness.com. On this site you can also hear other success stories. I started using the device January 2007. I used it in physical therapy for 2 months before I took the next step in renting the L300. If I remember correctly I rented it for 4 months at $500 a month and then all of that money went towards the final cost. Sorry but I just don’t remember how long it took for me to walk and not need to take my cane places with me. I remember things getting better little by little. My leg/foot always felt like it was heavy but it is not like that any more.

Just to let everyone know that you are welcome to ask me question and I will do my best to answer them. Just an FYI I am leaving tomorrow for the 2009 Cruise for a Cause but I will be back the 15th and will be checking in.

February 6, 2009 at 6:25 pm
(11) Jonna says:

Rob, as I was telling Sandy prior to using the L300 my lower leg/foot felt heavy it was like I had a 50 pound weight around my ankle. I know that I have regained strength in my lower leg and that has made a big difference.

Just to let you all know yes, I am the Jonna that was on the Today show.

February 6, 2009 at 7:10 pm
(12) Sandy says:

jonna
do you use the L300 all the time? walking around the house? when you are up & down like watching tv & doing laundry at the same time. or do you just use it when you go out shopping or to lunch? is your leg so much better now that you don’t need to wear it as much or do you still use it all the time?

thanks so much! it is wonderful to be able to ask someone who really knows about a product!

February 7, 2009 at 12:12 am
(13) Jonna says:

Hi Sandy
You are welcome, I still get excited about the things that I am able to do again because of the Ness L300. It has given me a piece of my life back and it is great to share with others in hopes that the device can do the same for them.

At first I used it all of the time but now I don’t have to. Sure there are still times that the MS gives me a hard time and makes it so that I need to use the device more. I also use the device any time that I know that I am going any distance.

February 11, 2009 at 9:42 am
(14) Dan says:

Jonna,

My legs feel like my quads are tight and weak too. Do your legs feel like that? I wonder if the L300 will even work in that case. Any houghts? Thank you

February 11, 2009 at 3:12 pm
(15) Sandy says:

hi everyone!
fyi–i went yesterday to be evaluated for the ness L300. it was an experience. first they did the whole history thing. then they put the electrodes on my leg to try it. the first time they turned the stimulation on i jumped & told the gal i didn’t think i would be able to do it cause it literally felt like an electric shock. she turned it down & startred out w/ a real low shock so i could get use to it. it worked much better. it worked & i walked around their big room. i was holding onto the PT the whole time. it was a ‘wild’ experience. i plan to discuss it in depth w/ my neurologist tomorrow, and i have a follow up appt scheduled w/ the PT friday. i am concerned about the long term effects of electrical stimulation.

i just thought everyone might enjoy hearing my experiences. this particular rehab has been using this product for about 5 months & have treated 12-15 patients in that time (tormorrow)

February 11, 2009 at 4:53 pm
(16) John says:

Hi all – I recently found out about another device that works a little differently than the L300. It works on more muscles than just in the lower legs. I am not sure about cost but if the L300 does not work, you may want to look into this. I am going to look at both items. Here is the website http://www.wearabletherapy.com. Good luck to everyone.

February 17, 2009 at 2:03 pm
(17) Jean says:

Jonna-thanks for the Today show segment – I’m hoping that the L300 will work for me – no one in my area is familiar with it, but my neurologist referred me to an orthotist who is willing to look into it, and is already scheduled to go to a training on a similar product (WalkAide) – he is working with the L300 rep for this area – I will likely be a “guinea pig” for his practice, but he mentioned reducing some charges because of it – he was also confident that my HMO would cover some of it as long as I have my medical team on board – so thank you for giving me hope – regardless of the outcome, this is inspirational and is causing me to be more compliant with my PT stretching exercises (for spacticity and weakness in my left leg) – I will report in on what happens with the L300 vs. the WalkAide, or other options – take care all! keep the faith!

February 17, 2009 at 4:42 pm
(18) Sandy says:

jean–i too kind of feel like a guinea pig! the girls at PT are working w/ the bioness rep closely since they have only been doing this for 5 months. i think i am only the 2nd ms patient to be treated at their office. the other pts have had strokes. it is VERY exciting! i’ve used the one in the PT office 2x now & it is amazing how much it really does work! any idea how long you will have to wait to try it? i go again tomorrow for another session & hopefully they will have heard something from my insurance company. i will be working closely w/ a PT since they have to re-teach me how to walk ‘normal’ again. good luck!! i am excited to improve as much as jonna did on the today show! if you have ms—i am sure you know what i mean!

February 18, 2009 at 5:47 pm
(19) Dan says:

I was evaluated yesterday and it really did a lot for my drop foot. I was still very uneasy while walking and there is a lot to do. I am going to check into the wearable therapy site too. Those devices are made specific based upon the individual need. I will let you all know how that works too.

February 18, 2009 at 9:10 pm
(20) Sandy says:

hi all. i went to PT again today. this is the 3rd time. the L300 works quite well on me. the higher the ‘zap’ the better my foot responds. i can feel it working more effectively on the higher numbers. the ankle at the top of the foot has been sore.(front of the bottom of the leg) do you understand what i am talking about? they have put a request in to insurance & are waiting a reply. word of advice to the ladies—don’t shave the outer aspect of the affected leg, up below your knee about 6 inches down. it makes your leg more sensitive to the stimulation.
that is all……

February 20, 2009 at 11:30 am
(21) Jean says:

Sandy-thanks for the encouraging words! I’m SO glad that it’s going well for you – I have to wait until April (at the earliest) to get started on either the L300 or the WalkAide (by that time, the orthotist should be able to recommend one of the 2 products and get me started) – until then, I need to focus on my PT exercises and STRETCH (my left achilles tendon is particuarly tight) – so I’ll keep you all posted!

February 24, 2009 at 10:35 pm
(22) Sandy says:

fyi….
my insurance approved the L300. i received my unit today! does anyone else have a L300? i am excited to start using it!

February 24, 2009 at 10:52 pm
(23) Sandy says:

jean-
i am a retired RN. my advice to you is to REALLY listen to your PT & do ALL the exercises they advise you to do. STRETCH-STRETCH-STRETCH!! i am pulling for you! by april you will be ready!!

March 20, 2009 at 11:13 am
(24) Diane says:

I started this week with the Bioness L300 –I am going back Monday for adjustment — a little movement in the device by the knee and my foot kicks weird. I am waiting to hear from my insurance (Aetna) — my MS is PPMS so I cannot use meds — this is it for me plus PT which has been doing well. My leg feels like it is weighted and I notice more lifting of my hip lately.

March 20, 2009 at 11:11 pm
(25) sandy says:

diane-
i am so glad to hear there is someone else starting to use the L300! i have been using the L300 for a few weeks. it has really helped w/ my walking ability. i felt my leg was heavy & i have been battling hip weakness for quite some time. they are really trying to teach me to walk correctly now, which i haven’t done for a long time. i have not been allowed to wear the L300 for about a week because i developed 2 little pin point sores from the electrodes. turning the unit on w/ the tiny open areas really ‘zapped’ me!! so today they re-adjusted the cuff & the electrodes, i have to wait 1-2 more days before i can start using it again. before i started using it i had alot of trouble walking. since i started using it i got up to walking almost 1 mile in my neighborhood. now i am back to square one since i got the open areas. but that is ok.

does the L300 help you? do you like it? are you able to walk “normal” w/ the unit?

i would love to hear from you again.
sandy

March 23, 2009 at 6:07 pm
(26) Marion says:

I was evaluated for the L300 today. We got my foot raising properly with no problem when I was seated. However it didn’t raise when I started walking on it. The therapist kept trying, varying everything from electrode placement to wave length of the shocks for 2 straight hours. She turned it up to the maximum I could tolerate (which was an average level for her other patients). I’m so depressed. Looks like I’ll have to get a foot drop prosthetic brace.

March 24, 2009 at 12:38 am
(27) Fran says:

My sister has tried both the Bioness L300 and the Walk-Aid devices. Both work well for her. She preferred the Bioness over the Walk-Aid.
With the Bioness device one can side step and turn. Company reps have been very helpful and informative. Have plans to rent unit and purchase later.
I would suggest trying both devices.

March 27, 2009 at 7:47 pm
(28) Sandy says:

test

March 28, 2009 at 4:44 pm
(29) Sandy says:

marion-
DO NOT GIVE UP!! call bioness & tell them your situation. they can help! i have been using the L300 for 7 weeks & it has taken that long to get everything adjusted correctly. it is worth the effort & time it takes! i have the ankle brace…the bioness is far superior to the brace. i hope everything works out for you. do not give up hope yet!!

March 30, 2009 at 8:09 am
(30) Diane says:

Well, I am two full weeks with Bioness L300 –when I first put it on in the morning, it is fine and as the day goes on, I have to adjust my setting from a “5″ to a “4″ and maybe even “3″. The good thing is that you CAN adjust so you can still use it. I definitely notice my hip doesn’t ache at the end of the day. You don’t realize how much you are NOT walking correctly until you start walking sort of normal again. This comes from at least 5 years of being treated for arthritis, pulled muscles and other things. MS is the harded to get a diagnosis and it took 4 neurologists and the 4th was my choice when I decided to get my health into my own hands and forget about the managed health mess. I am going to try the Walkaide today but the more I hear, the Bioness L300 is better. I have heard Walkaide can be used with only the same size shoe heel or you have to reprogram and apparently, you can’t turn — only move forward. Will let you all know how it works for me. Still waiting for Aetna to say yes or no so I am renting for the first 4 months at $500 a month. This improves your way of life — I don’t get it — if I were 65 and on medicare, medicare covers it. You would think they want the younger people to have a better way of life so they can continue being active — inactivity creates health issues which creates health costs for insurance companies.

March 30, 2009 at 4:59 pm
(31) Dianedilz says:

So here’s the deal…went to try the Walkaide today. It is only one unit versus 3 parts. It is smaller around the leg. You have a little more of the battery unit exposed to the front because it needs to read your femur. I think it is just as good as the Bioness L300 and is $1,400 less and there is no mandatory PT required. I am going back next week to use it for half a day for my usual work day and then go back. It definitely feels lighter and is less constrictive than the L300. I wish they would rent for at least a month because I would use both and decide which one I thought was better to walk with. The other positive of the Walkaide is you can be barefoot and use it….no shoe element. Will let you know how I make out on the 7th.

March 31, 2009 at 12:38 pm
(32) Sandy says:

does anyone else get indentations on their leg where the electrodes go? my indents are still there the next morning. the bioness rep is coming to help me wed. just wondering about others…..

April 3, 2009 at 12:50 pm
(33) Marion says:

Hi, everyone. Here’s an update on my situation. I called my PT and asked her to contact her Bioness rep on how this could work for me, which she did. After another 2 hour session, we finally found the correct places on my leg for the 2 electrodes. My foot finally raised correctly AND it still raised when I walked. I actually jogged about 15 steps down a hall. I’ve decided to try the rental program and am cautiously optimistic.

April 3, 2009 at 4:56 pm
(34) Sandy says:

marion!
i am so happy for you!!
i actually am having problems now w/ getting little sores under the electrodes. they think i am allergic to the electrodes. i am going to try again once my leg heals up. it is very frustrating! i love it when it works right though.
again, i am so happy for you! i am so glad you went back!

April 3, 2009 at 4:57 pm
(35) Sandy says:

marion!
i am so happy for you!!
i actually am having problems now w/ getting little sores under the electrodes. they think i am allergic to the electrodes. i am going to try again once my leg heals up. it is very frustrating! i love it when it works right though.
again, i am so happy for you! i am so glad you went back!

April 3, 2009 at 8:29 pm
(36) Marion says:

Sandy, the skin on my legs is super sensitive so I’m anticipating some problems with the electrodes. My dermatologist said to put topicort cream on the redness when it is still in the little-red-bumps stage.

April 6, 2009 at 8:44 am
(37) Diane says:

Hi, yes, I get the round electrode circles too but I know they have to be pressed in to get good contact. However, thru out the day I have to adjust my level from 5 to 4 to 3 and maybe even 2. Depends on if the device moves just a fraction or if your leg gets hot from exercise, weather, etc. I like the Bioness but am trying the Walkaide tomorrow for a few hours. One piece versus 3 appeals to me. I wish Walkaide would let you rent for a month to get a true fee. I hate to spend $4,800 and find out I should have stayed with the Bioness which I am now renting for $500 a month. I am 3 weeks into the Bioness. I am frustrated with the PT person because she said she didn’t see footdrop and I don’t need it. Well, she hasn’t been with me for the past 6 years and see my foot stub and I fall as my leg gets tired and she doesn’t understand MS from what I see. Also, the Bioness is so new, the PT person really needs the rep there to show them how to use it. The frustrating thing is that my insurance will not pay for PT so I am paying myself while the rep shows the PT what to do. With Walkaide, all the adjustments, etc. are done from the Orthopedic place you purchase the device. That is a plus with the Walkaide — no MANDATORY PT. I have had months of PT prior and my balance is corrected and I find doing it an hour on my own with all my own equipment at home works beautifully. I feel I probably know the Bioness better than the PT person and I also know my body reactions better too.

April 6, 2009 at 11:02 am
(38) Sandy says:

perhaps the bioness rep will come to your home to help as needed. my rep came to my home to help me. my PT had to contact the rep for advice frequently since it is all so new. PT discharged me once they felt i was independant w/ the bioness.i guess i did go about 12 visits to learn how to use the L300 though.
i am anxious to hear about the walk aid!

April 6, 2009 at 2:15 pm
(39) Sandy says:

one more thing about the bioness rep. when he came to my home he told me i had the cuff way too tight. he loosened it significantly & said that was one reason i was having so much of a ‘dent’ in my leg. i didn’t even think the cuff would stay up—but it does!! diane…do you take your cuff off during the day to give your leg a ‘break’?

April 6, 2009 at 4:45 pm
(40) Marion says:

Diane and Sandy, your comments are so helpful to me! I’m also paying fully for my PT ($150 a visit). Just so everyone knows who is considering Bioness – the company JUST lowered it’s rental period from 4 months to only 1, as of April 1. That is a significant change. The company told me this today. My paperwork got to them on 3/31 so they will allow me the 4 months.

April 6, 2009 at 8:53 pm
(41) Diane says:

I am SO happy that we can talk together because no one understands our feelings better than us!! I am so happy you got in to do the 4 months. I think going down to only 1 is going to hurt Bioness prospects. Apparently, some people get an allergic reaction over time to the cuff and have had to send it back on the 4th month. I have played around with the cuff too. When I use the bike and the ecliptical machines I take the cuff off and it is so nice to have the leg breath. I had to drive 4 hours the other day so I took it with me and put it on when I arrived at my destination and then off again to drive home. I don’t know how the summer is going to be wearing it. That is why I like the Walkaide — it is only half the size. The disc in my shoe heel is starting to bother me. I am thinking of trying a heel cushion to see if it will still work as well.

April 6, 2009 at 11:04 pm
(42) Sandy says:

diane–do you put the disc UNDER the shoe insert? your foot shouldn’t even feel the disc. i take the insert out & put the gray velcro pad in & then the white/blue disc that hooks to the wire that attaches to your shoe. if you can’t remove the shoe insert to get it under–perhaps you can buy one of those little cushion inserts–like the odor eater things. i can’t feel the disc thing at all cause it is UNDER the shoe insert. i have 2 pairs of shoes that i have been using & i have the gray velcro pad in both of them & i put the white/blue disc into which ever pair i am wearing. is that not the way you guys were taught to do it?

marion–i am so glad you got things moving rather than just giving up!!

i think it is GREAT that we have each other to talk w/ also. i don’t know what the summer will bring w/ the heat & sweating but did you know you can wash the cuff? you have to take the electronic thing off somehow but you can give it a “sponge bath”! today was the first day i wore the bioness to the gym. i took it off when i got there so i worked my ankle to the fullest extent. then i put it back on to walk out of the gym….it was nice not to wear the brace (afo)!!
i wrote too much—-gotta go

April 7, 2009 at 7:50 am
(43) Marion says:

Sandy, yep, velcro thing definitely goes under a shoe insert. Initially, the insert that came with my shoe was too thick and my foot wouldn’t respond so we switched to a thinner one, which the PT had. I’m sceptical about how my skin is going to react to this whole thing. Also, I wonder how Jonna’s cuff looks/smells after using it for a couple years! Can anyone tell me what the additional costs are for the L300 (electrode pads and what else?)

April 7, 2009 at 9:03 am
(44) Diane says:

Hi Sandy and Marion, yes, I do have the disc on the pad and under my shoe lining which has a spong pad to it too. I think I am just super sensitive to the hard disc in one shoe and not the other. It’s like putting a board under a mattress — you can still feel the stiffness. I understand that when you do the actual purchase, your electrodes are included for life — you pay for the electrodes while you are renting. Glad to know about the washing — I was wondering about that and if a new sleeve would be needed for inside. Marion stay with it because you do get stronger — I say it is as if you are having PT for the nerves. You don’t realize how wrong you were walking until you start to do it correctly again. Back in Oct. I had to learn to do the heel-toe walk all over because I was sliding my left foot since I couldn’t raise it due to the heaviness it has.

April 7, 2009 at 12:02 pm
(45) Jean says:

Great to catch up after not checking in for awhile to see all of the back-and-forth about both products! I finally had my Bioness evaluation yesterday, which was actually a training session with several Bioness reps and my orthotist – it was very preliminary, but it totally worked on my drop foot and felt great! I’m supposed to go back in a couple of weeks for the next visit, and they’re checking on insurance coverage now – have been to 4 PT sessions over the past month too that are helping with core strength, quad strength and stretching – I have a whole new zest for this damn disease now and want to charge forward – I will talk more to the orthotist about the Walk Aide too – he was supposed to also get trained on it this month – I’ll keep everyone posted and hope to read more about everyone’s trials and TRIBULATIONS! thanks ladies!

April 7, 2009 at 12:54 pm
(46) Sandy says:

diane–you need a better insert in your shoe. i can’t even begin to feel the disc through the insert in my shoe. perhaps, it is the type of shoe….i am wearing cross training shoes—perhaps you are wearing dress shoes–i haven’t ventured that far yet. i don’t know……..

September 10, 2011 at 1:17 pm
(47) priya says:

hey does dis L300 works for improving tilt walking?

April 7, 2009 at 2:12 pm
(48) Marion says:

Diane, I agree with Sandy that you shouldn’t feel the thing at all. I’ve only used it in my PT’s office but I didn’t feel it either (reminds me of The Princess and the Pea fairy tale).I’ve just “rented” my unit and I have the first after-you get-the-thing appointment Monday. Jean-welcome..it sounds like you and I are at about the same point. I hope Sandy and Diane can see us through it!

April 7, 2009 at 5:07 pm
(49) Sandy says:

welcome jean!
i will do my best to ‘put my 2 cents’ in but the way i see it……..we are all a bunch of guinea pigs….oink oink

April 7, 2009 at 7:13 pm
(50) Sandy says:

i do realize that guinea pigs don’t ‘oink’

April 7, 2009 at 7:32 pm
(51) Marion says:

We know what you meant….

April 7, 2009 at 9:05 pm
(52) Diane says:

Hi Jean…glad to have someone else on our discussions as we all tread thru new waters. Tomorrow is my second time trying the Walkaide. It would be great to walk without shoes on the beach!! I have a leather ked sneaker with a thick lining that I am putting the disc under and I can still feel it. In my dress shoes I barely feel it(the heel is about an inch) — I do put it on about 10 a.m. and keep it on until around 7 when I work. I keep turning it on and off since you can’t sit and have it on and obviously not driving.

April 7, 2009 at 9:15 pm
(53) Sandy says:

my husband says we aren’t guinea pigs….we are lab rats………i think i’d rather be a pig!

April 8, 2009 at 8:23 am
(54) Marion says:

Diane, can I ask about your comment that you adjust the level of the Bioness from 5 t0 2 during the day? Does your foot lift as well at a 2 level as at a 5 level? If so, why don’t you start the day at the 2 level? Pardon my ignorance, I haven’t started this yet.

April 8, 2009 at 9:41 am
(55) Diane says:

Normally, the 5 setting (which is a 28 for me) is perfect and then something happens (maybe a little movement) and the 5 is a sharp shock and my left foot goes sharply to the left in a very stiff way. By going down in my number it becomes more natural. Yes, the leg still lifts (maybe a little weaker) and I do not stub my toe the feeling is just softer. BTW, before this, my foot felt like it had a weight on it and my foot/toes would start to turn in after walking a block or so and I would trip. Also, sometimes I would move but my foot would get caught and stay where it was and I would trip forward. It is nice to not have to mentally tell yourself with every step to lift the foot, walk heel and toe. Still learning and tweaking. Changing the electrodes makes a difference!

April 8, 2009 at 10:29 am
(56) Marion says:

Thanks! Knowing this is “normal” for you will make it more understandable when/if it happens to me!

April 8, 2009 at 10:42 am
(57) Sandy says:

diane–when your foot goes out to the side–your electrodes need to be put back in the corrfect place on your leg. perhaps they ‘shifted’ while you were walking/moving. msybe you could just take the cuff off & put it right back on again. if i wear it a long time or when i am walking for a distance, i have to turn mine UP to get more stimulation cause my foot/ankle get tired & need more stimulation. mine is set at 34 for the best results. i turn it down when i first put it on to get “use” to it & once i start walking–i turn it up to a “5″ & if i go for a walk–like in my neighborhood–when my toes start “brushing” the ground as i walk–i ‘kick it up a notch’ to “6″ & that gives me a little more ‘zap’ & brings my toes up more effectivly.

April 8, 2009 at 1:15 pm
(58) Marion says:

Sandy, yours is the same experience I had walking in the PT’s office (started low and turned it up.) One thing I’m concerned about is that to get my foot to lift after a few hours, the level may be more than I can tolerate!

April 8, 2009 at 2:04 pm
(59) Sandy says:

marion,
you will be fine. i keep it at 5 all the time unless i am walking quite a distance & then i just go up to 6.

April 8, 2009 at 5:31 pm
(60) Diane says:

Hi everyone, I turn my down because the shock feeling is so intense. I have take the cuff off numerous times and put back on and still have the same situation most of the time. I think your body heat, outside temperature, sitting, standing, all plays a part in the electrode placement. I did the Walkaide today and had a chance meeting with someone who also is renting the Bioness (and also has PPMS) and is in his second month of renting and just signed today to purchase the Walkaide and send the Bioness back. I personally like 1 part instead of 3, cuff is smaller, no mandatory PT, the location does any and all adjustments for 2 years at no cost and it is $4,900. You pay for electrodes after the second year for about $270 a year. Going back next week to try again. In the meantime, I am continuing my rental for another month and then decide.

April 8, 2009 at 6:26 pm
(61) Fran says:

Update on my sister. She has her rented Bioness. Has gone to two PT sessions. Needs to do more work on getting her ankle to bend more. Just found out the insurance will not cover this item,denying coverage for the NESS L300 indicating that functional electrical stimulation is an unproven treatment for Multiple Sclerosis. This item is so new…hopefully in the future it will be given more consideration.

April 8, 2009 at 6:30 pm
(62) Fran says:

Update on my sister. She is using her rented Bioness L300. Has gone to 2 PT sessions, needs to work more on getting her ankle to bend. Just found out insurance will not cover this device…denying coverage for the NESS L300 indicating that functional electrical stimulation is an unproven treatment for Multiple Sclerosis. Hopefully in the future it will be given more consideration

April 8, 2009 at 6:44 pm
(63) Diane says:

I think we need to have a group go to WDC and go before the legislators to tell them about these devices. I can attest to the fact that my muscles/nerves function better after using this device for a month. In the very least, it improves a person’s way of life and allows them to remain in the workforce and be positive about themselves. Insurance companies will use any excuse not to pay out.

April 8, 2009 at 9:25 pm
(64) Sandy says:

i feel i am walking much better now that i have been using bioness for 2 months–when i DO NOT have the bioness on. it is like it has taught my nerve how to respond correctly after so many years of not doing so.

i feel a little guilty….but my insurance paid 100% for the bioness. so not all insurances are denying coverage to everyone. but i wish everyone had this experience!

my biggest problem now is i am not bending my knee when i walk. i still walk stiff-legged. i think i will do some ‘marching’ & maybe that will help.

April 9, 2009 at 7:32 am
(65) Fran says:

Sorry for the double post…newbie
To Sandy, it is so wonderful to read your post,stating how your insurance company paid for your L300! If your were able to provide more information, as to how you went about summiting your claim to your insurance company, it would be most helpful to all that view this blog. Was it a specific diagnosis, that being drop foot? Were there any specific medical tests for your diagnosis? I am planning to appeal this denial from the insurance company, and I am looking for all the help I can get. I know from seeing my sister using the L300 and the Walk-Aid, they work at improving the quality of her life.
You all take care…Fran

April 9, 2009 at 8:53 am
(66) Sandy says:

fran-
i didn’t ‘do’ anything specific to get the bioness approved. i took my script to PT. they sent it to insurance & i had to fill out some ‘bioness’ paperwork to send w/ it. in a short time ‘bioness’ called & said it had been approved & they shipped the unit the next day. it was all very simple. i wish you girls had an easier time w/ the whole thing. i feel bad that it was so simple for me & you are all having problems. :(

April 9, 2009 at 1:23 pm
(67) Diane says:

I was told by the Walkaide rep and by the PT office that these devices are covered under Medicare, Medicaid and some of the union’s insurance companies. I plan to appeal a couple of times. Nothing to lose and sometimes the squeeky wheel is heard. My first form with Bioness went in under the Hardware which in the majority of insurance companies is $2,500 or up to 80%. That must be one great policy to have 100% reimbursement! Happy someone was covered because it does make your muscles stronger and improves your quality of life. There should be a 60/60 minute program with a lot of stories on this.

April 9, 2009 at 2:12 pm
(68) Sandy says:

diane-
how does the bioness ompare to the walkaid?

April 9, 2009 at 6:08 pm
(69) Marion says:

Couple interesting comments from the Bioness users manual, regarding skin irritation. It says on pg 27 “Most reported cases of skin irritation occur after approximately 3 months of using the NESS L300″. So now that Bioness only rents for 1 month, I guess you’re stuck with the unit if you get the irritation after 3 months, like it states. I think the skin irritation is not uncommon so I would NOT risk $6200 on this unit no matter how good it is!!

April 9, 2009 at 6:56 pm
(70) Diane says:

Marion, that is exactly what I was told was why they did a 4 month rental because about 4 months into it, people start with a skin reaction. Now, you can only rent for one month so yes, then you are stuck with it. Sandy, I like the Walkaide because it is only one piece and the cuff is half the size. It appears to work the same way as far as stimulation but it works from your femur action so there is no electrical stimulation if you are standing talking to someone and your foot comes up on heel. I am going back next week. I am leaning towards it because it doesn’t involve shoes. Even after paying two months of rental and the cost of Walkaide, I’ll only be at $6,000 (including the PT I am paying for). Should insurance down the road cover part of it and there is a change/improvement, then I can get that unit. Either one changes your life and it does work!!! The important thing is to do exercises to stretch and not let atrophy set in.

April 9, 2009 at 8:53 pm
(71) Sandy says:

for the 1st time today–i could feel the disc in my shoe. diane–does the walkaid have electrodes? or what to stim your muscles/nerves?

April 9, 2009 at 9:36 pm
(72) Sandy says:

in reference to the walkaide—can you adjust the stimulation? what if i was walking a long distance & needed additional stim? would i be able to increase the stim level? w/ the bioness i use the remote to increase the stim by increasing it from a 5 to a 6. do i have that luxury w/ the walkaide?

April 9, 2009 at 9:55 pm
(73) Diane says:

The Walkaide has a battery/computer that adheres to the cuff and it has a knob that you can adjust the setting up or down — it just isn’t digital. There are two smaller electrodes on a cuff half the size. There is no disc in a shoe so you can wear any shoe or go barefoot on the beach or in your house. The central computer can adjust your gait and they can monitor your every move, just like Bioness. Just like Coke or Pepsi…two choices and I am sure there will be a third one day. They really do help and I think it keeps the nerves/muscles stimulated.

April 10, 2009 at 7:08 am
(74) Marion says:

Sandy, I wonder if replacing your shoe insert might help your feeling the electrode. Maybe these months have worn it down some. What do you think?

April 11, 2009 at 10:41 am
(75) Sandy says:

good morning
i am very frustrated! i figured i could ‘vent’ to you girls–you understand these things like no others! i have several little open areas on my leg where the electrodes go. so i can’t use the bioness this weekend. also, sometimes when i turn the thing on–it doesn’t work. the rep thinks i have a defective machine & he is coming out monday to see what he can do to rectify these probs. in the meantime i am back to using the brace–which at this point–is quite simple. i don’t know if the walkaide would do me any better since it deals w/ electrodes directly on the skin also.
after 2 months of the bioness i should be a lot further than i am!!

i realize i am very lucky since my insurance covered it—so i am going to try to make it work—the rep says perhaps they just need to replace the machine since it is not working correctly. despite that it is just frustrating that i can’t just put it on in the morning & have a very active lifestyle all day—like jonna.
i am done venting now…..have a good day & happy easter to everyone!

April 11, 2009 at 11:46 am
(76) Diane says:

Sandy I feel so bad for you!!! So far, after one month, I have had no reactions to the skin. Going into my second month rental so we’ll see. When I went to try the Walkaide the first time, they used that gel on my leg that they use with an ultrasound. When I left and put the Bioness on, it worked the best ever and I wonder if that gel worked as a lubricant to the skin and electrode and could be a solution to skin irritation. I don’t know if Bioness has an electrode for “sensitive skin”. Walkaide does — they are twice the price but if it works, it is worth it for people with problems. Happy Easter — we’re having heavy rain today.

April 11, 2009 at 4:41 pm
(77) Marion says:

Sandy, the frustration you’re feeling isn’t new to any of us with this stupid disease. But I feel really bad for what you’re going through! I’m betting that in 3 months I’ll be just where you are due to my sensitive skin. But it’s worth doing everything I possibly can so I have my first PT appointment with my new Bioness on Monday. If we don’t do absolutely everything for ourselves that is possible, we’ll be letting ourselves down. We can’t do that!!! If you/we have skin problems with the Bioness I am also guessing that the Walkaide may be no better. But it ain’t over til it’s over so don’t give up yet!! It’s raining in CT but I am sunny inside with hope!! Happy Easter.

April 11, 2009 at 6:18 pm
(78) Sandy says:

thanks for all the kind words!
i was wondering where everyone lived…plus a little about all my new friends…. i live near st louis, mo. 43 yrs old (for 1 more week!) been married 18 1/2 yrs. 2 great kids(16 y/o girl ,13y/o boy). dx w/ ms 18 1/2 yrs ago. retired RN (ms made me retire :( so sad!). on betaseron 13 yrs, that is tooo many shots!!
sunny & 60 here today–rain on easter eve.
i would love to hear about you guys!

April 11, 2009 at 6:49 pm
(79) Marion says:

50 years young. Married 23 years. MBA Finance worked for 20 years as financial manager. Finally quit not because of MS but due to fact that my kids were raised by a live-in nanny and were reaching the teen years in which they needed me. Daughter in college, son in high school. Diagnosed when I was 28 with foot drop and optic neuritis. Doctor said to get handbrake on my car and get sterilized, I should never have kids. I quickly switched doctors. Diane, we need to hear your story.

April 11, 2009 at 7:01 pm
(80) Marion says:

Forgot to say that I started on Betaseron when it first came out. There was a lottery then and my number came up. But the injection-site skin problems got so bad after 2 years that they switched me to Avonex (once a week so much better!!!!) I’ve been on that for many years. I’m relapsing/remitting but I never seen to remit. I get a new symptom and it stays. To look at me, you would never know I have MS (unless you see me walk for about 20 minutes). I haven’t told anyone but my family that I have MS but my walking is degenerating and it is getting harder to hide.

April 12, 2009 at 8:17 am
(81) Diane says:

Happy Easter morning…the sun is finally out in NJ…I live about 8 minutes from the beach. I am 58. While diagnosed with PPMS July 2008, I had noticeable symptoms since 2003 and going back in history, probably have had beginnings years ago. I have many autoimmune diseases starting with Graves 1994 (in remission). I seem to cure one and get another. PPMS is not going to be cured so hopefully my list stops. I take baclofen before bed and Vit D twice a month and PT daily at home. Other than that, meds will not work with PPMS which makes the Bioness or Walkaide so much needed. My daughter is 29 and lives in MS and having my first grandchild in June! I was divorced after 30 yrs.–my ex could not handle my tiredness,doctor appointments, etc. I live in a brand new 55 and over community and work as I am a partner in a real estate company.

April 12, 2009 at 11:01 pm
(82) Sandy says:

good evening!
the open areas on my leg are nearly gone. :) the bioness rep is suppose to come tomorrow & see about the machine malfunctioning. hopefully he can get it all figured out! i have been using the brace all weekend. i hate the thing but it sure is simple to put it on & forget about it–using the bioness has really been a hassle lately.

i had optic neuritis 1 month before i got married. that is how things started. one year later i developed numbness in my right arm. i was working in the hosp at the time & was suspecting ms. ms was confirmed. i got pregnant a couple months after that. i had about 3 attacks a year until i started the betaseron. i haven’t had many attacks since but my walking is a problem & my hand dexterity is a major issue. the 2 probs led me to retire from nursing–which i miss terribly. so now i stay home & take care of things here. my kids have many activities which keep us busy.

i developed an infection from my shots in my abdomen in nov. had surgery day before thanksgiving & had an open wound in my abd which they left open since it was infected . they put a sponge in the hole & hooked it to suction. it took nearly 4 months to heal. had homecare nursing & PT. it just healed up last month. what a winter!!

good night girls…

April 12, 2009 at 11:25 pm
(83) Chrishadms says:

Go for the Walkaide!! Its one piece, it’s cheaper, and most insurances including Medicare are covering them now!

April 13, 2009 at 7:41 am
(84) Marion says:

Sandy, have you considered Avonex? Shots in the side of the thigh once a week. My abdomen looked like hamburger after 2 years of Betaseron.

April 13, 2009 at 8:27 am
(85) Marion says:

Does anyone know what benefit that the electode in the shoe has (with Bioness) vs. the Walkaide with no shoe piece? I know we keep saying Walkaide is better because there is one piece instead of 3, but is there a significant benefit that comes from the extra piieces that Walkaide doesn’t have?

April 13, 2009 at 8:31 am
(86) Diane says:

Chris…do you have the Walkaide?? I am trying to find out about other people’s settings. One place sets your setting at a 5 and another place sets your beginning at 1 which really doesn’t give me much room to go down if the zapping seems too strong during the day. I am the opposite of most people — I need my setting set lower as the day goes on because I cannot tolerate the zap as it seems to intensify. I was just told that Walkaide would not be covered (just like Bioness) because the FDA didn’t approve only as a trial. Glad everyone made it thru the long holiday weekend!!

April 13, 2009 at 10:22 am
(87) Sandy says:

marion–the disc in your shoe tells the cuff when your heel lifts off the ground so it can stim you. it is just a sensor-not an electrode. they tell me the walkaide goes by the angle of your bone to decide when to stim you.

April 13, 2009 at 11:12 am
(88) Marion says:

Thanks, Sandy! Have you heard if one way of stimulating the nerve is more effective than the other? I remember when I first read about the Bioness that it was better at helping you walk on uneven ground due to the shoe sensor. What have you heard?

April 13, 2009 at 11:41 am
(89) Marion says:

Correction on last post – I meant to ask if one way of sensing when to stim the nerve was better than the other.

April 13, 2009 at 9:20 pm
(90) Sandy says:

the bioness rep came today. he got the bioness working. repositioned it slightly & turned it down to 23…it was at 34. i was only allowed to wear it a short time so i am not positive how it will work on a long distance walk (it was raining so i will wait until tue).

hopefully, it will all go well. how is the walkaide working for you diane? which device do you like so far & WHY do you like it?

marion–the betaseron has worked worked quite well for me. i was having 3 attacks a year prior to starting it. i have been on it almost 13 yrs & i can count the attacks i’ve had on 1 hand since starting it. november was the first time i ever had a problem—& it just happened to be a major ordeal. the surgeon said “it just happened”. i don’t know if i could give myself an IM injection…

April 14, 2009 at 10:36 am
(91) Jonna says:

Hello All,
So sorry I haven’t been checking in. I didn’t realize until today that you were still chatting. I will have to print this out so that I can try to answer some of the questions that have came up. Marion you are on the right track about the shoe sensor. The shoe sensor it helps ‘sense’ what you are walking on…… grass, uneven groud, the side walk, what ever you are on. It is one of the great thing about the L300 it adjust to you as you walk and as to what you are walking on. Please remember that I am also a patient and dont have to official explanations. I have just asked many questions and now even have friends with Bioness that I can contact directly to ask questions. You all have the Bioness reps and your PT’s but if you have a specific question I will do my best on answering it and if need be I will contact one of my Bioness friends

April 14, 2009 at 11:23 am
(92) Jonna says:

OOPS…I just hit the say it button and didn’t mean to. Now for the challenging part I need to remember where I was at with what I was wanting to say. Hmmmm I am sure that there are others that can relate to the memory and cognitive probles. I am thinking I was saying that I will try to answer questions (and yes I will be check in). I can give you my thoughts and for official answers I can/will contact one of my Bioness friends. Back to the heel sensor. Yes, it also sends the message to the cuff when you heel is lifted. It is also the key to balance. One of the things that my PT had me doing was working on my balance. She would have me stand on one leg and when my weight would shift and as I got off balance the heel sensor would know and would stim so the muscle would contract to help stabilize me.

When it comes to the intensity of the stimulation ‘zap’ that can be set by your PT. I have went back to have my PT adjust this.

For those that saw me on the Today Show you know a lot about me and that I live in Wyoming. I have been dealing with the MS since 1992 when I was 19 years old. I am on Tysabri and have been on it for a couple years. Prior to that I was on Zenapax for 3 years, this is another Monoclonal Antibody. I was in a clinical trial and that is how I was on this. It is not yet FDA approved.

April 14, 2009 at 2:48 pm
(93) Marion says:

Thanks Jonna! Your experience is certainly invaluable. I do have a question. When I first went to my PT to be evaluated for the Bioness, we spent 2 hours and my foot went out, in and up but when I started to walk, we really couldn’t get enough lift. We gave up and rescheduled. (see my first post above). I went back and we finally got my foot lifting when I walked and sort of straight. I was excited (see my 2nd post above). So I ordered my unit, received it, and went in yesterday to my PT for the setup. We got an exact repeat of the first session: 2 hours of moving the electrodes, varying wavelength and everything else possible. But we couldn’t get enough lift and we couldn’t get my foot straight enough. I left rather depressed. The Bioness rep is coming to see us next week. But my PT spent alot of time trying everything so I’m not too hopeful. My question for you is have you ever heard of anyone else having so much trouble with this? Thanks!

April 14, 2009 at 9:46 pm
(94) Jonna says:

Hi Marion, I have heard of others that the positioning of the electrodes was challenging for the PT. It is great that the Bioness rep is coming to see you next week. I wish you the best and I look forward to hear how things go with your appointment with the Bioness rep.

Just a FYI for everyone. Chances are your PT has already told you this but ya never know. First of all when you shave this will make the electrical impulse (stim) feel much more intense. There have been many times that when I shave, I skip the area where the electodes will have contact. Another one make sure that the area does not have lotion on it. I have found that if I have forgotten to make sure the area is clean and free of lotion or anything like it and that causes the unit to not work at full strength or the connection is totally lost.

April 15, 2009 at 9:50 am
(95) Diane says:

Marion, stay positive…it will work…if your nerves are close and wrap like mine, it is a challenge but the Bioness REPs are much more in tune than the PT and I am sure the Rep will get it correctly. I had my second try with the Walkaide yesterday and they couldn’t find the spots they had last week. I am going back Friday and they are ordering a smaller cuff to make sure the electrodes have a good contact. Will keep you posted…in the meantime, I am continuing to rent the L300.

April 15, 2009 at 10:05 am
(96) Sandy says:

marion–i agree w/ diane—stay positive! the rep will help next week. my electrodes have to be EXACTLY on the right spot or it does not work right. i have ‘sharpie’ marker tatoos on my leg so i get it perfect. i totally understand your frustration! i used the bioness for 2 days now & i am getting some more raised bumps on my leg where the electrodes go. AAGGGGHHHHHHHHH!!!!!!!!!

April 15, 2009 at 10:07 am
(97) Marion says:

Thanks, Diane. I haven’t given up yet! Jonna, some of us have concerns with skin irritation. Since you have been using the Bioness for so long, have you had problems with this? If so, how have you dealt with it?

April 15, 2009 at 11:01 pm
(98) Jonna says:

Hello All,
I have only had a couple times that my skin was irritated but it has not been anything that has been on going. I remember when I was wearing it all day that I would have times that I was at my desk so I would take it off while I was sitting.

I am not sure who has been given the Ness L300 Skin Care Guidelines. One of my Bioness friends sent it to me so that I could share it with you all.

NESS L300™ Skin Care Guidelines
Occasionally after using electrical stimulation for an extended period of time users may develop skin
irritation or skin reaction under the site of the electrodes or the Functional Stimulation (FS) Cuff.
NESS L300™ System users should follow these guidelines in order to ensure good skin health with increased dosage (wear time). Most reported cases of skin irritation occur after approximately 3 months of using the NESS L300™, so it is important to develop a good skin care routine early and then continue to follow these guidelines when using the NESS L300™.
Prior to putting on the FS Cuff for the first time each day, clean the s • urface of the skin that will be directly under the electrodes with a wet washcloth. If the skin has any oils or lotions, then it is best to clean it with soap and water and rinse well.
• Always check your skin in the area of the FS Cuff when putting on and taking off the FS Cuff (if necessary, another person can help you with this). Skin irritation or reaction usually appears in the form of redness or a rash.
• Make sure to maintain and replace your Electrodes whenever necessary. The electrodes should be replaced at least every two weeks even if they appear to be in good condition.
• After taking the FS Cuff off the leg, always cover the electrodes with their protective plastic covers.
• Excessive body hair in the area of the electrodes may reduce the electrode’s contact with the skin. However, if shaving is necessary, then it is recommended that you use an electric shaver or scissors.
• Make sure the electrodes have uniform contact with the skin when the NESS L300TM is worn.
• If the NESS L300TM is used continuously all day long, then you should ventilate the skin by taking off the FS Cuff for at least 15 minutes approximately every 3-4 hours.
• If skin irritation or a skin reaction occurs:
• STOP using the NESS L300™ immediately
• CONTACT your Clinician, Dermatologist or Bioness Clinical Specialist
• RESUME use only when your skin is completely healed
• Once you resume use of the NESS L300TM, follow a CONDITIONING PROTOCOL as per
the clinical recommendations from your Clinician, Dermatologist or Bioness Clinical Specialist.

For more information please contact Clinical and Technical Support at: (800) 211-9136, option 3.

April 16, 2009 at 10:24 am
(99) Sandy says:

i am so frustrated!! i have done everything per the bioness skin care protocal & i am still breaking out. this is almost more hassle than it is worth!!! i am about ready to send it back.

April 16, 2009 at 12:40 pm
(100) Marion says:

Sandy, you’ve probably talked to a dermatologist, right? What I plan to do (per my derm) is right after I take the electrodes off for the day, apply a small amount of topicort cream. Of course, first I have to get the unit working for me (next week).

April 16, 2009 at 2:12 pm
(101) Sandy says:

marion, i am going to try that. i guess i just have REALLY REALLY sensative skin! i have to have it working well this weekend cause my new little nephew is getting baptized & i am the godmother AND the party is at my house & i have so so much to do—i don’t really have time to be hassleing w/ the bioness…..hense my frustration!!

April 16, 2009 at 4:22 pm
(102) Marion says:

My skin is unbelievably sensitive, which is why I spoke to my derm before I’ve even started it. Do you have a brace you can use this weekend instead of the Bioness? It sounds like this is a bad weekend to be messing with such skin problems!

April 17, 2009 at 1:03 pm
(103) Diane says:

Well, I am wearing the Walkaide for the day and so far I have raked the lawn, walked and played ball with the dog, went up and down the steps in the house and set up the house for my daughter’s baby party tomorrow and it has been a good trial. They used the new cuff and the new larger electrodes today and what a difference. Plus, you drive with it on and you don’t get the stim. Now, if you can’t move your knee forward (stiff leg), the Walkaide will not work for you. I will probably be moving forward and sending the Bioness back. Even after paying for two months of rental and my PT visits, it is a break even situation on price.

April 17, 2009 at 3:15 pm
(104) Sandy says:

this morning the ‘walkaide’ guy called me. he didn’t know i already had the bioness. to make a long story short—he said there really is no difference between the 2 devices. he preferred the cuff on the bioness because it was a little better suited to house the electrodes. he said they are coming out w/ a ‘new imprpoved’ cuff soon. he said no insurance has ever paid for the walkaide. i did finally tell him i had the bioness & he said it was basically personal preference. he did say walkaide had a sensitive skin electrode & i plan to call bioness about that. i will let you guys know.

April 17, 2009 at 10:55 pm
(105) Jonna says:

Sandy, I hope your weekend goes well it is an important one. I wish I knew more about what you could do for your skin. Marion’s suggestion “right after I take the electrodes off for the day, apply a small amount of topicort cream” sounds like a good one. I will be interested to see what you find out when you call Bioness.

April 18, 2009 at 8:22 am
(106) Diane says:

Sandy,while the two devices work in helping you walk, they do work on your body differently. The Walkaide works from your femur and after using it all day I could tell my hamstring was tired (good thing because I was told in PT months ago it was weak). Also, another person that just sent back their Bioness also had tiredness the first couple of weeks because they also were using muscles never used before — good thing! The Bioness reads your heel and if I am tired and start to “swing” my leg around, it allows me to do so but “lifts the leg around”. The Walkaide makes my leg go straight (hence, working on your inner thigh muscles. Walking up and down stairs was great. The new cuff makes a 100% difference (contours to your leg shape and is like a glove) and the new electrodes for sensitive skin stick to your skin and are soft — the regular ones are very small and had a hard time staying in place for me. I would strongly suggest to anyone not committed to their final purchase, to test this out — I did it four times.

April 18, 2009 at 12:01 pm
(107) Sandy says:

thanks for all the great advice!! yesterday i was angry cause i was having all these probs. i had a lot to do so i just put the bioness on & did what i needed to get done. pretty much wore it all day w/ several breaks in between. it worked great & today i have a pretty good rash going. mmmm…think i’ll leave it off today. i plan to go try the walkaide–hopefully next week when the party is over. have tons to do today…i hope everyone has a good day!!

April 19, 2009 at 3:48 pm
(108) Jonna says:

It is my understanding that the Ness L300 and the Walkaide stimulate the same nerves and affects the same muscles. The big difference between the two is what triggers the stimulation. With the L300 there is a gait sensor which is what I have referred to as the heel sensor. It has the “heel-on/heel-off” events to turn the stimulation on and off. The Walkaide uses a tilt sensor that is attached to the leg cuff so it fires based on changes that occur to a person’s knee/leg angle while they are walking.

If I was to walk sideways, backwards, up hill, down hill or so on the Ness L300 knows when to fire because of the heel sensor. It is able to adjust to what I am doing. The Walkaide technician programs the tilt sensor to fire during the fitting process. So when the person is out and about using the Walkaide the knee/leg angle needs to be somewhat consistent for the stimulator to fire.

With the L300 it is designed to “hug” the leg and has 2 adjustable straps that help maintain to position of the electrodes. There is a cut out in the front of the cuff that helps position each time. I am lucky here because I have a scare that lines up with the indentation in the cut out.

Many of us with MS have developed compensation like hip hike or swinging the leg out so that we can clear our toes and not stumble. I didn’t even realize I was hiking my hip until I was in physical therapy and it was pointed out to me. It takes time to “undo” these bad habits. It was great going into my physical therapist and having her point things out to me and then that helped me understand why I was hiking my hip, how the Ness L300 could help and then the best part was to hear my PT re-evaluate my walk and gait each time I went back.

Any time we start using a muscle that we have not used much for a long period of time we are going to be sore. It was kinda nice to have my calf muscle sore that is how I knew the muscle was getting a work out and I was getting stronger.

April 19, 2009 at 11:29 pm
(109) Diane says:

Well I used the Walkaide the entire weekend and I have to turn it in tomorrow which is upsetting because for the first time in 3 years, I felt like a normal person. I walked the boardwalk, walked the dog for almost two miles without thinking about it — even with the Bioness I think of how far can I go. This is how I evaluated plus I talked to a medical person about my findings too. Since the Bioness reads off of my heel, it really has more “bionic” control over my entire foot and it is a good movement but not a natural movement. The Walkaide works my nerves that my brain cannot reach any more from the MS, and works from my knee and femur movement so the rest of my ankle and foot are natural. I actually did a few jogging steps tonight. I am so happy I had tears in my eyes!! If we search long enough, somewhere there is a answer for us (for the moment) — the thing is to stay with it, never give up!!

April 20, 2009 at 9:50 am
(110) Sandy says:

mmm….i am curious about something. when using the L300 it ‘teaches’ your muscles how to ‘walk’ & after a little while–even when you don’t have it on—your walking imprpoves. is that also the case for the walkaide? after using it for a while—does your walking improve when you are NOT weating it? i am very curious how these 2 devices compare to each other. i have an appt w/ the walkaide guy this morning.

i did call bioness last week & they encouraged me to try the walkaide to compare the 2. they felt the bioness was far superior to the walkaide & i would see that if i compared them. soooo….i am going to do just that!! i will share my thoughts later today….

April 20, 2009 at 11:16 am
(111) Diane says:

Hi Sandy, good luck!! Hopefully they will have the new cuff and the sensitive sticky electrodes. I brought the demo back today but my unit should be in tomorrow. and, Yes, you are retraining your muscles and they do work better when it is not on also. You do work some additional muscles — hamstring for one which is great because I was told mine was weak and I did feel the fatigue on Thursday and by Saturday it was great. Again, you need some range of motion and bending your knee for the Walkaide to be most effective. I tried the Walkaide 4 times to be sure and then had it a few days — a charm.

April 20, 2009 at 12:31 pm
(112) Marion says:

Tomorrow I have an appointment with a Bioness rep to resolve the problem with “finding” my nerve. I would love to have tried the Walkaide too but the only place I could find that has it will not allow you to try it except in their store. You pay close to $200 to come in and try it and then you pay again each time you go into their store to try it! I need to try it walking around my house and outside, not just in their store!

April 20, 2009 at 2:27 pm
(113) Sandy says:

here are my experences…i like the cuff on bioness better. walkaide guy never could find right place to put electrodes. i think it is just a matter of personal preference. i prefer the bioness. it has the ability to get more specific on stim level, ability to move sideways or backwards, ability to change stim level easily while walking. all in all i feel it is superior to the walkaide—FOR ME. i don’t doubt the walkaide is better for diane—however—i prefer the bioness. i am glad i went to see for myself or i would have wondered forever.

April 20, 2009 at 2:30 pm
(114) Sandy says:

marion–good luck tomorrow! i bet you finally have success!! let us know how it goes!

April 20, 2009 at 4:42 pm
(115) Jonna says:

Sandy has your skin been doing better? It sounds like things are going better for you.
Marion you have you appointment tomorrow and I wish you the best. It is a great feeling any time we can get a piece of our life back that the MS has taken away. It doesn’t matter if it is the Ness L300 or the Walkaide, both of them have made a difference and has given hope back to so many of us.

You gain strength, courage and confidence by every experience in which you really stop to look fear in the face ….. You must do the thing you think you cannot do.
-Eleanor Roosevelt

April 20, 2009 at 8:49 pm
(116) Marie says:

Hi All,
I have enjoyed reading about your experiences withe the Bioness L300. Over the past 30 days I started using it. I am now at a point when I can use it all day. I have been diagnosed with a form of MS called PLS or primary lateral sclerosis. I am almost 40 years old and started showing classic foot drop when I was 8 years old. I haven’t walked correctly since then! My husband saw the Bioness segment on the Today Show and yelled across the house for me to come and watch. We were so excited!
I don’t have nay skin issues, but my biggest problem, and please tell me if anyone else is also experiencing this, is that my foot everts when I take a step. When I say evert I mean it twists outward when my foot is raised. I have been back to the PT 4 times and each time they adjust it by moving the nodes around so the eversion is minimized, but within a day the eversion starts back up. If I lower the setting from 5 to 3 the eversion goes away, but then my foot is not being raised enough to prevent me from tripping. Does anyone else feel like the nodes on their device need to be rearranged all the time?

My second problem with the device is that it will shock me when I am not taking a step. For instance, I will keep it in active mode during dinner because I have to periodically have to get up from the table to get something, but while I am sitting at the table I will get shocked like it thinks I am taking a step. At first I don’t mind, but after while it gets very frustrating. It also comes on when I adjust my weight when I am standing still.

I have prayed for something like this for practically my whole life. I want it to work so badly and fix my leg that I feel like I should just “get over” these issues and accept it.

Sorry for this being so long…..I would appreciate any input others have.

April 20, 2009 at 10:12 pm
(117) Jonna says:

Hi Marie,
I know what you are talking about with it shocking you when you have not taken a step. I have learned how to position my leg/foot while I am standing or sitting so that the heel sensor does not get touch. If I know I am going to be moving around while sitting or standing I just turn it off yet I keep the remote right with me so that when I get up all I have to do is push the button and it is ready to go.

I also had the problem with how my foot wasn’t raising like it should. It had my physical therapist stumped. As my foot would raise it would go out, in and then out. My PT call one of the reps and she came by for my next appointment. My foot didn’t go way out and way in it was like it was like, hmmmm how do I explain it. It was like it was doing a little “gig.” I think it took three appointments of adjustment and since then I have had no more problems with that.

You talked about the segment on the Today Show. I would like to share with ya all a little about that. I worked with the producer for 3 months before we were on live. I still can’t believe it really happened. The only thing I wanted from doing the show was to know that I was able to make a difference in at least one life. The response has been phenomenal. I have been on a couple diffent blogs, I have had people get my e-mail address and even had some find my phone number and call me. It has been wonderful hearing/reading the excitement and hope so many people have.

April 20, 2009 at 10:51 pm
(118) Sandy says:

marie,
welcome to our ongoing letters/notes to each other. i feel as though i have several new friends who are dealing w/ the same issues i am dealing w/. it is wonderful!! never feel like a note is too long–we have all written long notes. we are right there w/ you!

i have the eversion probs also. they spent a LOT of time getting my electrodes placed properly. if they are moved the smallest amount i evert. sometimes when i wear it a long time i have to take it off & put it right back on to get the placement correct. sometimes in the morning it takes me several times to get the placement just right. my electrodes are right below my knee (right leg) on the right side of the bone that goes down the center of your leg. the electrodes are lined one right below the other. like this : if the electrodes get moved i evert.

the bioness ‘zaps’ when your heel lifts off the ground. the easiest way i have found to sit at the dinner table & keep it turned on is this. sit down. lift your heel up & let it ‘zap’ you for the 4 seconds. then DON’T put your heel back down. it will not zap you unless you put your heel down & then lift it back up. i don’t know if this is the way you are suppose to do it—-but it works for me!

as far as standing goes…sometimes i will put it in ‘training mode’ if i am going to just be standing in one place for a while, somestimes i turn it off, sometimes i kinda do like i did at the table—lift it up & let it zap you for the 4 seconds & then DON’T put your foot back down otherwise it will zap you.

i don’t know if i helped you–or if i even made any sense. i look forward to you joining in our chats!
good night girls…

April 21, 2009 at 7:12 am
(119) Marion says:

Hi, everyone. Count me in as a member of the eversion club. That’s the problem I’ve been having too. For my foot to lift enough, it goes way out to the side. I think my electrodes need to go down the center, too.

April 21, 2009 at 10:47 am
(120) Sandy says:

yesterday–when i went to try the walkaide–the guy asked if i knew where my electrodes went & when i told him–he shook his head & said “well, thats not where they should go…” (he was an a**!) but hey–it took lot of trial & error to get it figured out. now the bioness brings my foot straight up. only if it gets moved do i evert. my prob now is re-training my knee to bend w/ each step. i REALLY got into the habit of walking w/ a ‘stiff’ leg & not bending my knee. it is a hard habit to break. w/ each step i have to tell myself ‘bend your knee’. it is hard to carry on a conversation when walking cause i have to keep talking to myself.

April 21, 2009 at 12:09 pm
(121) Marion says:

Sandy, we all talk to ourselves but only some of us admit it. I met with the Bioness rep today. She moved the electrodes around many many times and said I was just one of those with a hard to find nerve. And if you move the electrodes about a millimeter they are totally off. I started my rental period today but it is going to be trial and error getting the cuff situated right each time I put it on. But I’ll try anything.

April 21, 2009 at 2:00 pm
(122) Sandy says:

marion–there were days i had to put the cuff on 7 or 8 times before i got it right. one day i never could get it & ended up using the brace. it is very frustrating but hopefully you won’t be quite as frustrated since you know beforehand. i was ready to send mine back then too. seems like i’m always ready to send it back!! we have a love-hate relationship….l either love it or i hate it! today i love it cause it is working swell!!

April 21, 2009 at 2:36 pm
(123) diane says:

Sandy, sorry you had a bad Walkaide experience. My first person I tried it with got it right in an hour but I didn’t like the place (person not so much either) so I looked around the internet and found one very close to my home. The most caring two men you could find and I went there 3 times and am going shortly to pick up my own system today. By the way, the Walkaide rep (who is also a PT) came in the other day when I was returning the demo and he was fantastic!! He also knew of my MS doctor who is very well known — I was shocked! Also, there should NOT be a charge for trying — I called 5 places and you can come as much as you want and NO charge!! Do your research. Where I am going they are purchasing a second unit that they will be renting out for short trials. In regards to the Bioness, I have the same uncontrollable eversion going on and have to change my cuff and sometimes my number — today I was down to a 2 (with new electrodes). Since I do have another option that points my foot up and forward, I am sending Bioness back until it is improved. By that time maybe my PPMS will need something new and maybe insurance will pay something. Alot of money with mandatory PT and without insurance coverage you are looking at $8-9,000.

April 21, 2009 at 5:46 pm
(124) Marie says:

Hi everyone, I also have to tell myself to bend my knee each time I take a step. I cannot carry a conversation while walking now. I haven’t bent my knee to walk in 31 years. I saw the PT today. She rearranged the nodes again and it worked great! I was so pleased. 4 hours later it isn’t working as well though, not sure why, but I am still walking a heck of a lot better than without the device. I have a tremendous amount of spasticity in my gait when I walk. If I get stressed the spasticity becomes exponentially worse. There have been a few occassions I couldn’t take a step because I was stressed. My legs would vibrate and shake just standing still. I’m thinking the spasticity might be whats causing the electrodes to not consistently work.

I’m afraid I might have a love/hate relationship with my Bioness too. I haven’t tried the Walkaide….maybe I should just for comparison sake. Bioness hasn’t sent sent in my insurance paperwork yet so it is still unclear whether it will even be covered.

April 21, 2009 at 7:59 pm
(125) Kim says:

I had my first visit today with p/t and getting started with the Bioness. We hooked it up on my left leg (most trouble with) and it was totally awesome. Kinda weird at first cause my foot would jump when it was turned on but we worked with settings and I walked the hall for a little bit (with a big smile on my face). Got to go back tomorrow to test the right leg/foot. I have very good ins. so as this progresses I hope to get one at no or little cost…..

April 21, 2009 at 8:00 pm
(126) jeanne says:

Hi – I’ve enjoyed reading everyone’s comments. I have had the Bioness L300 for about 3/4 weeks now. I too had heard about a segment on the Today show and did a little research etc.. They were having a screening day where you could try it out and learn about it and of course that was it – wanted one! And I have been able to go out for walks again. There are two things that i’m a little disappointed with. One is that I’m realizing its not something i will be wearing around the house or at work. The thing just doesn’t always shut off, beeps all the time. I guess the foot sensor is just so sensitive and the way i put weight on that foot just doesn’t want to shut off. I can stand on one foot and it won’t shut off. So around the house i’m constantly beeping and shutting it on and off – which is a drag.
Secondly, I am kind of surprised at the lack of customer support. It is an expensive, high-tech, complicated piece of equipment. Right now i’m renting which i would think for Bioness would be an ideal time to check in and see how it’s going with me and seal the deal and encourage me to buy it-but i haven’t heard a word.
But, all in all, glad to be able to go for a walk.

April 21, 2009 at 8:23 pm
(127) Marion says:

Marie, I have very bad Restless Leg Syndrome so I understand about the spasicity. Every time the shock would occur, my leg would jump out. I resolved this by take the lowest possible level of my medication (Mirapex) which was just enough to make the jumping stop and allow the Bioness to do its job.
Today was my first day in the Bioness rental month (1/2 hour with it on + 2hrs at the PT’s office trying to get the electrodes right.) What is amazing to me is how light both my legs feel with the unit on!! They always felt like there was lead in them! I feel almost “normal”! The awful stress on my poor left leg, trying to compensate for my bad right leg is gone with the unit on. This thing definitely has promise for me!

April 21, 2009 at 8:35 pm
(128) Marie says:

Marion,
I have it only for my left leg, the worse of the two. I would love to try it on both legs though. I bet it feels awkwardly fantastic! Sounds wonderful for you!

April 22, 2009 at 7:25 am
(129) Diane says:

Jeanne, I understand the annoying feeling of the sensor always going off. When I had to return the loaner Walkaide the other day, that is when I realized how disappointed I was. I had the Walkaide on for 3 days without turning it off during the day and I never realized it was on. To have to keep turning the Bioness on and off and the beeping is frustrating. While the Bioness rep is very good, once you get the unit they require mandatory PT at your expense since most insurances will not cover. I was told that someone from Calif would be calling me and follow up with me on my insurance claim but it is 6 weeks and no call. Very disappointing since I think this is the big business way — I personally like the personal touch. The Walkaide support is the O&P where you purchase for two years (the two men there are fantastic)and if there is an emergency, the Rep (also a PT) is available via phone or e-mail or will come from Phila.

April 22, 2009 at 8:20 am
(130) Sandy says:

diane & i have had very different experieces w/ bioness. i am very pleased! bioness has called me numerous times. they called w/ in 10 days of me submitting my insurance claim to tell me it was approved. i had probs w/ a part—after some troubleshooting—they sent me a new part–got it the next day. the rep has always been there for me–at PT, via phone or coming to my home–he has been to my home 4-5 times. when i was having skin issues the gal from california called several times. if i have questions i call the bioness line & someone pleasant & helpful is always there to help. i am very pleased w/ the service i am receiving from them.

i would like to welcome all the newcomers to this blog! it is wonderful to get all the opinions & experiences of everyone.

jeanne–there has to be a reason your sensor keeps giving you trouble. you should be able to use it in your home. call your rep & tell them–i bet they can help you.

marion–i am so happy for you! how is your skin holding up?

marie–is the ‘sitting at the table’ info i gave you working?

April 22, 2009 at 8:39 am
(131) Marion says:

Sandy, I’m at the beginning of my Bioness “wean on” period so I’m probably not wearing it enough for a big skin problem. What I plan to do is wait until I’m allowed to wear it more and then I’ll put my Topicort cream on half of the electrode area (after I take the electrodes off for the day) and nothing on the other half. That way I can tell the folks in this forum if there seems to be any difference, so others can consider trying it (if it works..) Also, the Bioness people were great with me too. I have one person I deal with and she always returns my calls. She also calls to see how I’m doing. She wanted to be sure my unit arrived in time for my PT setup so she shipped it overnight at their expense.
Joanne, I agree with Sandy that there is certainly something wrong with your unit! Did you know you can turn all the sound (beeping) off?

April 22, 2009 at 10:10 am
(132) Marie says:

Sandy, Actually I ended up buying new shoes. Shoes with a thicker sole. Since then the sensor has not been as sensitive. When it does trigger though, I do what you recommended and let it shock me for those few moments and then don’t set my foot back down until I am ready to walk again. It is much better now. Thanks so much for your help!

How does your Bioness work on steps? The steps in our house are not deep enough for my heel to rest on each step. Consquently, unless I turn it to sleep mode before I start, it really doesn’t work.

April 22, 2009 at 11:08 am
(133) Sandy says:

marie–try turning your foot a little sideways so your heel does hit the step. that is what has worked for me.

April 22, 2009 at 11:20 am
(134) Sandy says:

i wanted to say i really valued the manadatory PT. i felt the PT really helped me improve my gait & made me more aware of probs i had developed over the years for compensating for the foot drop, like not standing up as straight as i once did. PT really helped me! and you can go back to get the bioness ‘tweeked’ or adjusted to meet your changing needs.

April 22, 2009 at 1:41 pm
(135) Jonna says:

Hello All,
It continues to be nice reading all of the comments. Bioness has had a trial and/or new user teleconference. On the call there was a Bioness rep, the Bioness person that is trying to set up an advocacy program and then two of us that are Ness L300 users and are volunteers that are helping get the advocacy program up and going. We didn’t have but a couple people call it but it was nice because they could ask question or just talk about how things were going for them since using the Ness L300. Thanks to this blog I just sent out an e-mail suggesting that they have a teleconference monthly and let the trial/new users know about it. I hope that it can happen I think it would be helpful.

“Life should NOT be a journey to the grave with the intention of arriving safely in an attractive and well preserved body, but rather to skid in sideways, chocolate in one hand, body thoroughly used up, totally worn out and screaming “WOO HOO what a ride!”
-unknown

April 22, 2009 at 3:43 pm
(136) Marion says:

My second day on the Bioness – - This thing is actually amazing. When I walked around the PT’s office in the past, I had the unit up to a 5 or 6 in intensity, walking fast. Today I wore it to the grocery store and was elated to find out that a level of 2 was plenty. I did other errands in town and found 2 was still enough. I eventually almost forgot I had it on. When I got home, I decided to test it and walked on the most uneven ground I could find in the woods and the Bioness didn’t miss a beat. It felt like 10 years ago before I had footdrop! Initially, I was skeptical about whether I would be okay with 3 parts vs 1 with the Walkaide. I actually really like the little remote because I can change the intensity, depending on what I’m doing, without even breaking stride. It’s seamless, so to speak. Also the the little remote comes with a lanyard (if you want to wear it around your neck), a wrist strap, and a little case to hook on your belt. I switch around, depending on what I’m wearing (the belt case isn’t too good with sweat pants!)
I am naturally a skeptic and this is only the 2nd day, so I’ll keep you posted.

April 22, 2009 at 6:08 pm
(137) jeanne says:

Hi- no i didn’t know you could shut the sound off. how? i have used the buttons on the side of the control to turn in down but i don’t know how to shut it off. thanks

April 22, 2009 at 6:37 pm
(138) Marion says:

Jeanne, the manual pg 25 says “reducing the volume to the minimal setting mutes the control unit.” My control unit only beeps once if I change the intensity level. I never want it to beep at all when I walk!

April 22, 2009 at 7:11 pm
(139) Marion says:

Jonna, could you answer a question for me? The “wean on” period with the Bioness goes to wearing the unit 9 hrs/day then to all day. What if you don’t want to wear it all day, every day? If, after you’re up to the “all day” level, you don’t want to wear it at all one day, and then maybe for only 3 hrs another day, do you then have to start over with the “wean on” period?

April 22, 2009 at 10:32 pm
(140) OTGIRL says:

Hi, I have been scanning thru the posts for the past hour and I have enjoyed reading!! I also purchased the Bioness in January after a year of consideration. I am an occupational therapist and work with PT’s in an outpatient clinic. The PT’s have been trained with the Bioness for almost 2 years. I tried the Bioness out several times times while at work and many therapists and the Bioness rep tried to talk me into getting it. Stating that I “was the best candidate”. I was still skeptical and was afraid to pay so much for a device since insurance didn’t pay for it. So I finally bought it in January 2009. I wore it for about 6 weeks and loved it! I had more energy and my gait was almost perfect. It gave me so much confidence. Well, after 6 weeks I developed contact dermatitis. Eight weeks later I am still fighting the rash, it’s almost gone with the use of Topicort. I’m hoping to begin the Bioness again in the next few weeks and hope that the rash does not develop again. I just thought I would share my story with your guys!

April 22, 2009 at 11:28 pm
(141) Kara says:

I’ve had my bioness for a week. I was not given a “wearing schedule”. It seems like the nerves fatigue after a while and then I walk worse…I walk really stiff. I then shut it off for a while and have some short lived ability to lift my foot well. I’m not sure why the PT didn’t give me better instructions in wearing this other than to do the training mode 3x/day for 10 minutes. What has your PT’s recommended.

April 22, 2009 at 11:45 pm
(142) OTGIRL says:

Kara- The PT should have given you a conditioning protocol to follow. This was developed by Bioness for all users and it is very important to follow the program. The muscles, skin and nerves need to have time to build up to wear the device all day. I would ask the PT at your next visit for the protocol. I can send it to you if you want it.

April 23, 2009 at 7:48 am
(143) Sandy says:

kara–call bioness now. otgirl is right–their ‘breaking in schedule’ is VERY specific. you need to follow their protocol to get ‘use’ to it. if not you will possibly have skin breakdown in addition to sore muscles. their # is 800-211-9136. they are VERY helpful. you will like them. your PT also needs to be informed.

April 23, 2009 at 7:57 am
(144) Sandy says:

otgirl–was bioness aware of your skin issues? i am allergic to the electrodes also. they did an ‘incident report’ on me because of it. bioness is coming out w/ a different electrode for those of us having probs. they tell me it should be out around aug of this year. contact the bioness rep–they may be able to tell you more. being allergic to the electrodes is no picnic. i have to be very careful.

April 23, 2009 at 8:22 am
(145) OTGIRL says:

Sandy-Yes I contacted Clinical Support at Bioness and they were very helpful. They told me to go to the Dermatologist to get a definate dx to treat it. The thing is, sometimes you aren’t actually allergic to the electrode it’s just the skin has to get used to it over time. So, it’s a waiting game when I start back using the Bioness. I read on here that someone was putting the topicort on the electrode pads before donning the Bioness. Does this help prevent the skin rash?

April 23, 2009 at 8:35 am
(146) Marion says:

OTGIRL, you may be asking about my post #98 and the topicort cream. Definitely don’t put anything ON the electrode pads! I said that after I remove the pads for the day, I was planning to put a small amount of topicort cream on my skin where the pads had been. My derm advised doing this to prevent the problem. It is a prescription – comes in generic,

April 23, 2009 at 9:04 am
(147) OTGIRL says:

Ok thanks, I must have misread it. My dermatologist said to put Topicort on right after I take the Bioness off every day. Once I start the Bioness again I hope this solves the problem.

April 23, 2009 at 9:53 am
(148) Jonna says:

Marion, Once I made it through the “wean on” period I have never had to go back and start it over. Double check with you PT to make sure but I haven’t needed to do it and I haven’t had any problems.

Kara yes you should have a conditioning protocol to follow. OTGIRL and Sandy were right on track with their comments.

Feed your faith and your fears will starve to death.
-unknown

April 23, 2009 at 10:37 am
(149) Sandy says:

marion-i have been using mine for various amts of time each day depending on what i am doing. i have not had any probs even after not using it much one day & using it alot the next day. i think it is just the initial break-in that is important.

i think back to your 1st post–a long time ago–i was so concerned you were going to miss this wonderful device because it didn’t work the 1st time you tried it in PT. i would just like to say….YOU’VE COME A LONG WAY BABY!!! i love the post on the 2nd day you used the bioness! keep up the good work my ‘original friend’ on this blog!!

April 23, 2009 at 12:20 pm
(150) Marion says:

Sandy, thanks so much for the support!!! You’re right, I have come a long way. It’s a lesson to anyone trying the Bioness to stick with it and exhaust all possibilities before giving up. Today is my third day and I’m really looking forward to my 40 minutes. At the beginning of each day, I figure out when it will be most important today to walk “normally” and I plan my Bioness time for then!

April 26, 2009 at 1:12 am
(151) Susan says:

I have been using the Bioness at home for about a week. I also have had problems getting the stim to shut off when I’m standing. I have been lifting my foot off the floor and then putting it firmly down again. This has been working for me.

This blog has been very helpful! Thank you.

April 26, 2009 at 11:23 am
(152) Marion says:

I’ve been using the Bioness for almost a week now. I need to take the cuff off and reposition it about 7 times initially to find the exact right spot. After that, I’m good to go and the thing works great. I’ve had to do alot of walking on an uneven undeveloped lot and I’ve felt very stable!

April 26, 2009 at 2:25 pm
(153) Sandy says:

susan–i do the same thing you do when i am standing–it works for me too.

PROBLEM—i nicked my ankle while shaving–right under the ankle sensor that hooks onto your shoe. it has really been draining alot of clear (sero-sang–for the medical professionals) fluid since. a band-aid isn’t enough–i need a gauze sponge to absorb it. i couldn’t find anything in the owners manual. has anyone ever experienced this type of thing happen to them? do you think it has something to do w/ the stim aggravating it?

April 26, 2009 at 3:27 pm
(154) Marion says:

Sandy, hmmmm. Sounds like the nick has to heal. Could be the stim unit may be interfering. How about getting a box of Dr. Scholl’s “Blister Treatment” pads. These pads (not medicated) are super tough- made for blisters and rubbed areas on the back of the heel. Anyway, they’re thin, almost invisible, stay on even through several showers. But put a small square of gauze right in the middle of the pad (put antibiotic cream on gauze) and stick it on the cut and only change it once a day. These blister pads are a well kept secret and are flexible enough to use even under the ankle. What do you think?

April 26, 2009 at 3:43 pm
(155) Jonna says:

Hi Sandy,
I haven’t had anything like this happen. I would suggest moving the sensor that clips on to your shoe to the other side. I have moved the sensor to several different places on my shoe. I put it were it is the most comfortable.

April 26, 2009 at 4:58 pm
(156) Sandy says:

thanks for the advice girls.
the sensor doesn’t bother it per say cause i have a gauze pad taped over the cut. it is not your normal ‘nick’-the razor went sideways so it is about 1/2 inch long-just slightly sliced w/ 2 blades. i have never had a ‘nick’ ooze this much sero sang fluid though. i thought maybe the stim had something to do w/ it oozing so much. i have to change the bandage a couple times a day cause it is soaked w/ the sero sang fluid. i am going to try switching the sensor to a different spot. i don’t think the blister pads will work cause the fluid has to go somewhere… i have to go get another bandage now–this is the 3rd one today!

April 26, 2009 at 5:22 pm
(157) Amy says:

I have been using the Bioness for about 3 weeks now. 2 weeks on the right and now going to try 2 weeks on the left. I now wear it for about 3 hours a day but usually by the last hour the place where the electrodes are get pretty sore. When I turned down the “jolt” it doesn’t really work. I sure can tell a difference when I am not wearing it so that is a really good sign this could be for me. I can’t figure out how to put it in training mode. I wasn’t shown how to do it yet. Can you let me know how. I really want to try the walk-aid. I will be interested to see how that device works, so I will try it next. I hate the fact that I am going to have to take out a loan on this but you gotta do, what you gotta do. My insurance says no.

April 26, 2009 at 6:39 pm
(158) Sandy says:

amy-to put it in training mode-push the swirl button(same on to put it in gait mode) & hold it down until you see a “t” come up where you normally see a number 5. that should do it.

April 26, 2009 at 8:42 pm
(159) Jonna says:

Hey Amy, I forgot that you had asked about that. OK I will try to explain it… Take the remote, turn the unit on, now the button that you press to make it start working – you will press it and will hear one beep, keep it press until you hear a second beep, this takes like 4 seconds… it is now in the training mode. Sit so that you can relax your leg. I usualy prop my leg up on something. Many times I would sit at my desk prop my lower leg up on the the L300 carrying case and then just let it do it’s thing while I worked. I am thinking that my PT was able to change how long it would stay on.

I was glad to see you got on this blog. This is a great group chatting and helping each other out.

I believe that anyone can conquer fear by doing the things he fears to do, provided he keeps doing them until he gets a record of successful experiences behind him.
–Elenor Roosewelt

April 27, 2009 at 10:47 am
(160) Marion says:

Jonna, I absolutely LOVE the quotes you put at the bottom of your posts! They’re so appropriate to all of us. I’ve told them to several people. Keep ‘em comin’.

April 27, 2009 at 3:02 pm
(161) Jonna says:

I hope all is well for you all. Marion I enjoy finding the differnt quotes to share.

Whether you think you can or think you can’t, you’re right.
–Henry Ford

April 29, 2009 at 12:16 am
(162) Amy says:

Hi gals—I was wondering if any of you have tried the walkaid. Curious if it simpler and more effective then the Bioness. Also, when people see you with the Bioness on and they ask what it is what is your response?

April 29, 2009 at 8:57 am
(163) Diane says:

Hi Amy, welcome. I purchased the Walkaide 10 days ago after trying it 4 times and after renting the Bioness for two months. They are both good units and the Walkaide will probably not work for someone who cannot bend their knee as the stim works from the knee/front femur movement. I found that the Walkaide makes me feel the most normal I have been in a couple of years. It lifts my leg and moves it forward without controlling my ankle/toes to a “robotic” feeling like the Bioness does. Last week I even painted rooms which I haven’t been able to do in years. I also go up and down stairs naturally (but slower than I used to years ago). With the Bioness I had to keep turning it on and off. Having one piece of equipment is so much simpler. There should be NO charge to try it. I have the new designed cuff and use the larger sensitive electrodes — worked like a charm!!! I went to the beach this weekend and walked on barefoot, took it off and put it in the plastic ziplock bag and when I was leaving, I had an extra bottle of water to wipe my leg where the electrodes go, wet the electrodes, put it on and walked off the beach. Cost was $4,900. The O&P people where I go are wonderful. The Rep from Philadelphia also came to meet me the day I was getting my own unit to make sure I was totally happy and if I had questions. I had spoken to him before. Everyone owes it to themself to try both!! Oh, while the Walkaide does not rent, one O&P place said I could leave for lunch and come back and the O&P where I purchased let me take it for the afternoon when the new cuff and elecrodes came in to try and that was the deciding point for me — did my normal day for 4 hours and didn’t even know I had the Walkaide on!! Try to negotiate with the O&P — the place where I purchased realize the importance and are now buying a second unit that they will be “renting” for a day on their own with no responsibility to Walkaide.

April 29, 2009 at 9:09 am
(164) Sandy says:

amy-i did try the walkaide. it was a ‘simple’ machine having only 1 piece. it stims based on the bone (tibia) angle. the strap is just a simple band w/ a box attached to it. the walkaide guy actually told me he prefered the bioness cuff. bioness is deffinatly more ‘high-tech’ & personally i prefer the bioness. the walkaide guy acted like i was taking up his time where as bioness-everyone from the people i have talked to in CA to the PT to the bioness rep i deal w/ in my home town-have been WONDERFUL! they are all willing to do whatever they possibly can to help me. you need to wear shoes w/ the bioness because of the heel sensor but i always wear shoes. the walkaide can be used w/ bare feet. after many years of foot drop-i use shoes to protect my poor toes.

i have been using the bioness for 3 months & have encountered many curious people. to my friends-i tell all about it. to people who seen genuine in their curiosity-i tell them it is a new device to help me walk cause i have ms. to people who are just nosey-i just tell them it helps me walk. i have received positive comments & encouragement from all. my kids (16 & 13) like it cause it helps me walk longer distances & more normal. they say they can “definately tell a difference” when i don’t have it on. i thought they would be against me wearing the cuff cause it was ‘different’ but i got the exact opposite reaction-they want me to wear it cause it helps me walk better.

now i have a question-jonna-perhaps you would best be able to help as you are the longest user. now w/ each step, i have to tell myself to bend my knee & lift my leg. did you do that? i want to know if you think i will ever get to the point where i will be able to walk & NOT have to really think about each step.

amy-if you get the opportunity to try walkaide at no cost-then try it. bioness actually encouraged me to do so. i saw the difference & will not use the walkaide again. one thing i forgot to mention is the remote that goes w/ the bioness. you can adjust the intensity of the stim by the push of a button. it is very specific. walkaide has a small dial on the box on the strap that is not nearly as specific. you have to bend down to adjust the intensity-however w/ bioness-just push your + or – button & you don’t even have to stop walking. like marion says “it doesn’t skip a beat”.

i am done rambling now…

April 29, 2009 at 10:11 am
(165) Sandy says:

amy-please see posts #101 to about #121 where diane & i discuss the walkaide/bioness numerous times. jonna has a good note also. this will give you a better idea of all of our thoughts. it is such a personal decision. walkaide works best for diane-but not for me. bioness works best for me-but not for diane. we have both tried them both. reading all of our posts should help you. good luck!

let us know what you think.

April 29, 2009 at 12:21 pm
(166) Jonna says:

Hi Amy,
When we talked the other day you said that you were going to be going back to your PT and have her watch you walk. Then have her let you know which side the footdrop was the was worse. Have you done that yet? I remember asking a lot of question so that I could better understant what was happen and what the Ness L300 was doing to correct it. Also have you contacted Bioness to see if there is a rep that would be able to meet with you?

The quality of a person’s life is in direct proportion to their commitment to excellence, regardless of their chosen field of endeavor.
–Vincent Lombardi

April 29, 2009 at 2:43 pm
(167) Tina says:

Has any one had any problems going through security at the airport with the Bioness?

April 29, 2009 at 4:56 pm
(168) Jonna says:

Tina, I have never had a problem with security at the airport. I have had it in the carrying case and I have also worn it through. I have been asked a couple of times what it is and I just tell them that it stim unit that helps me with walking/footdrop. They may look at it and then I am on my way.

Sandy, when I get more fatigued I have to talk to myself. When my legs are fresh I don’t have to think about it. The more time that I had using the L300, the more muscle tone I got back and the les that I had to thing about it. It is when I push myself too hard and get fatigued that I have to think about it more and give myself a pep talk.

In any moment of decision the best thing you can do is the right thing, the next best thing is the wrong thing, and the worst thing you can do is nothing.
–Theodore Roosevelt

April 29, 2009 at 10:52 pm
(169) Kara says:

Thanks to everyones comments here. I’ve been reading it every few days and all comments are helpful! Bioness gave me a wearing schedule which was quite helpful. I’m trying to keep a careful watch on my skin, removing the cuff every few hours as they directed.

I’m like Sandy, I have to think about every step. It’s even difficult to talk with someone while I’m walking because I am concentrating so much on walking. I was wondering the same thing…how long does it take to get a little less “effortless”. I definitly have issues of weakness in flexion of my hip. I also think I need some major “core” work. I’m just trying to take walks each day on smooth asphalt or a track while I’m getting used to this thing.

Thanks to all of you!

April 30, 2009 at 7:48 am
(170) Diane says:

Hi Kara,

I am glad to see that you are moving forward and I think you will find strength does follow. The key issue is something you hit on — core strength. While these devices are “miracles” they cannot work on their own. You need to do strengthening exercises. I had two wonderful PT’s last Fall which really helped my core and my balance. When I started using the Bioness I realized my hip (which wasn’t used properly in years) needed a lot of help. I turned to get some hip exercises to do. I exercise an hour a day a minimum of 5 days a week. Since I have PPMS, I know I have to stay with it because everyday my symptoms can get a little worse and I won’t realize it until it gets a lot worse and by that time I am behind the eight ball. Stay positive, exercise, don’t give up and move forward. I think all of us talk to ourselves and think about the next step we have to take. I find that since I know the Walkaide works for me, I can be calmer as I think about walking from my car to the store or have to do a flight of steps. In my job I have been fortunate to know people so that I can become a public advocate for these devices and I plan to. We all need to have a voice and express the need for the acceptance and for insurance companies to be made to recognize the need and the reward of them!! Keep us posted on your progress and you will have progress.

April 30, 2009 at 7:57 am
(171) Sandy says:

i am glad everyone enjoys reading this blog. it comforts me to know that i am not the only one out there that can’t walk & talk at the same time. what a ‘quiet’ walk we would have if we all lived close together & went for a walk each day!

gotta go to the gym now. sometimes i wish i could go to the gym cause i “want to” not cause i “have to” to keep my body working as best it can.

hope everyone has a good day!

April 30, 2009 at 8:53 am
(172) Sandy says:

diane-your notes are always uplifting!
kara-i agree w/ diane-you need some core exercises. you can’t do this by yourself. you need the guidiance of a good PT. do you have a good PT? a walk everyday is good but we all need more to deal w/ the challenges ms deals us. i go to the gym 3x a week for about 1 hour & 20 min each time. i also try to walk each day in addition. i also have exercises i do at home (although sometimes after all the other exercises–i slack in them) sometimes i feel like all i do is exercise! i have been going to PT on & off for over 10 years.

i hear the gym yelling for me to get there–gotta go!

April 30, 2009 at 2:08 pm
(173) Jonna says:

I commented on security at the airport and no I didn’t have any problems with that. The one thing that I had a problem with and learned from was that I should have taken the L300 off while in flight. Sure I had it turned off but I found that during the flight I had swelling in my leg and that caused more irratation. I asked my PT about it when I got back from the trip and she told me that this is something that happen to many people and advided that I take it off while in flight.

April 30, 2009 at 3:23 pm
(174) Kara says:

Thanks for all of your encouragement. Yes, I found a good PT but I’m only going to see her about every other week now that I have the bioness. The co-pay is $45 each time. She will give me exercises to do each time. You are absolutely, positively right when you say that you have to keep exercising. I don’t think I would have gotten this far in the last 16 years if I didn’t try and do some exercises several times a week….swim, lift weights, eliptical or whatever I can do while I schlepp myself around.

I too had to quit nursing at the hospital last fall (I still tear up thinking about it). I’m trying to find more of a “paperwork” nursing job around my kids schedule.

It’s so nice to read this blog because I feel like everyone has a “life” other than this darn MS being the center of it. It’s always in the background but it’s good to focus on the better parts of life!!! Hugs to you all!

May 1, 2009 at 1:50 pm
(175) Marion says:

So I’m still doing my bioness trial but I have a question. Though the electrodes are velcroed into my cuff (I never move them), a hairs-width difference in putting the cuff on makes a huge difference in whether my foot points out to the side or whether it tilts sideways upwards (instep up, walking more on outside of foot than evenly on foot). I wind up taking the cuff off and repositioning it about 15 times. Does anyone know what foot movement the bottom electrode vs. the top electrode controls? I mean which electrode needs to be adjusted when I have the walking-on-ouside-of-foot problem, as opposed to the foot-setting-down-evenly-but-pointing-outward problem??? I don’t take the electrodes off and reposition them but I put the cuff on a tiny tiny bit different.

May 1, 2009 at 5:55 pm
(176) Diane says:

Hi Marion,

I would call the Rep and have then check your settings on the computer. I had to do that because the more I used the Bioness my nerves/muscles responded and they had to change the computer settings a little. After that I played around with the remote to go to a setting that was strong enough and still work. I also found that as you said, one little very minor change and it works differently — just getting in and out of the car could change how it worked. But remember…it is better than being without!! Just give the Rep a call.

May 1, 2009 at 8:42 pm
(177) Sandy says:

marion-i am having the SAME problem!! i think diane is right-we need to call the reps. i am STILL having a major prob w/ not bending my knee too. i try & try to walk ‘normal’ but it is not working very well right now.

May 2, 2009 at 1:11 am
(178) Amy says:

Jonna my PT has been gone this week and the gal that is taking over isn’t all the brightest so I chose not to bring it up with her. My PT will be back next week so I will talk to her then.
I was wondering what kind of core exercises you all do?
How do I know if the bioness is right for me. My balance is so off so it is hard for me to tell if it working. Will my balance get better? Right now I wear it on the left but my right leg gets exhausted so I have a hard time with it wanting to lag behind. What if footdrop is not my underlying problem? How will I know?
I at times feel messing with the bioness is kind of a pain. I do dread getting shocked sometimes. Will this get to be a natural part of my body sometime? I have so many questions. I have to decide soon if I want it or not and on which leg—but how do I know?

May 2, 2009 at 8:13 am
(179) Diane says:

Amy, don’t give up on yourself!!! Last Fall I was so off balanced, it was hard to stand still without swaying and I would walk into the walls. I found two wonderful PT’s. My balance issue — gone!!! They started me doing the bicycle 15 min., treadmill 20 min. forward and 5 min. walking backward (backward only at 1.2). Apparently backward is a real key. They had me stand on one leg and then the other (stand by a counter top). Then, standing on a balance (wobble) board for 5 minutes. Pulling up 30 times on both legs to your toes, then 30 times on the good leg, and 10 times on the bad leg (coming down slowly). Lying down, knees bent, small ball between knees and pulling backend up – 30 times. There is a flat round rubber disc that I put my feet on when my knees are bent and pull up also. All of these were for balance. Then, to help my stability, they started me on stretch bands. There are numerous ones to try. I have one I tie on a table leg, have a loop at the other end I put around my ankle (of bad leg) and walk forward with the bad leg forward, sideways and pull the leg backwards (30 times each). There are many more, but these are the ones that helped my core, balance and stability. Now, I am working on my hip since I walked so wrong for so many years. By the way, you were asking about the Walkaide, are you going to try it because I love mine. I also almost didn’t go back for my 4th visit because the 3rd was all zapping and could not find the spots. I was cringing at being zapped yet again but the 4th was a charm — took 10 minutes to get me up and walking and I have had it two weeks, have it on all day and barely think about it. I am going to WDC for a full week of meetings and for the first time in a LONG TIME, I am not apprehenstive of all the walking we do on The Hill.

May 2, 2009 at 8:26 am
(180) Marion says:

Amy, it could be that these FESs are not right for you. (Did you ever resolve your skin problem from post #155?) The complication of needing something for both legs is tough. What does your PT say? Has a Bioness rep actually seen you? They should be able to tell if this will work for you!! Also, your PT should have TONS of core exercises to give you? Google it on the web and do the ones you are able to. They may seem tough at first but will get easier over time. To check if you have foot drop lift one leg slightly and stand on the HEEL of the other foot. Does that foot flop to the ground? It takes about 20 seconds before my foot goes down. I think many of us have complications other than foot drop (I have weakness in my legs).
Does anyone else have comments to help Amy?

May 2, 2009 at 9:32 am
(181) Marion says:

Diane and Sandy, problem is that I’m pretty sure the computer settings are right because the PT and Bioness Rep played with them for 2 hours until I was walking like a master! The rep told me I would have to readjust the cuff at home until I get the right “spot”. It would be helpful to me if I knew which electrode controlled which foot movement so I would know how to adjust the cuff. I forgot to ask at my last appt.

May 2, 2009 at 1:22 pm
(182) Sandy says:

marion-
i have heard it needs to be adjusted every once in a while. my rep in coming monday. i will let you know if he does anything or what he says.

May 3, 2009 at 9:34 am
(183) Susan says:

I can relate to you Amy. I’ve been wearing the Bioness about 3 weeks now. I just started wearing it all day yesterday. I don’t see any progress as far as getting stronger. I am still short of breath when I walk any distance at all. I can only walk on the treadmill for 10 min. and that is if I push it. It feels unnatural when I have the Bioness on. I will need to be making a decision soon and am unsure of what to do. Like Diane I have worked with PT over the years and have done all the same exercises, but never seem to see improvement. I think my body is resistant to change. Meds for bladder control have never worked for me either. Everyone always says exercise will make you stronger but I wonder if it has no effect on some people. Maybe it is because I’ve had MS for so long (25 years). Thanks for listening.

May 3, 2009 at 11:15 am
(184) Marion says:

Susan, I’ve had MS for 22 years. The worst symptom I ever had was bladder control problems. For years my neurologist tried to get me to try an outpatient procedure in which botox is injected into the walls of the bladder. I resisted this everytime I met with him. Eventually I found that meds wouldn’t work for me anymore without extreme side effects (oxybutinin is absolutely EVIL with me – also tried other meds.) I don’t even like to take Tylenol, let alone have outpatient surgery! Out of desperation I had it done. I’m now completely normal as far as bladder goes. Have been off all meds since the day I had it done – 6 months ago. Let me know if you’re interested abd I’ll relate my experience. It absolutely changed my life!

May 3, 2009 at 2:13 pm
(185) Kara says:

The PT had great difficulty finding a consistent placement on my leg also. She then used a Sharpie pen to mark the circles of indentation on my leg when we did find the “right” place. Since then, I have kept my leg marked with a few dots as points of reference when I apply the cuff. If I do keep the bioness, I may even consider having the little dots tatooed (though I am not a tatoo person but I have nothing against those who are!) Just keep a sharpie in the bathroom so that you can reapply it about every other day.

Susan, try to stay with the exercises as Diane pointed out. It’s so hard to make time in our busy lives. It seems like the benefits take so long to see and we lose patience. Diane gave some great examples, a few I do already, and a few I am going to add to my repetoire!

May 3, 2009 at 3:55 pm
(186) Susan says:

I’ve done the botox injections several times. It only lasts a few months for me. I manage well with self cathing which I probably wouldn’t have done without having to self cath with the botox. Now I wait a couple of hours without using the rest room instead of every 15 minutes. I’ve also had a trial of the interstim implantation. That didn’t work either so that’s another reason I tend to think my body is resistant to a lot of treatments.

May 4, 2009 at 8:58 am
(187) Marion says:

Susan, I feel so bad for you that it didn’t work! I know there are some for which it is ineffective. I hope you can resolve the Bioness problem. I’m no expert but 3 weeks of using the unit seems a bit short to start to see an improvement in your walking. Maybe Jonna or someone can tell ua how long it may take before we see an improvement in walking without the unit on.

May 4, 2009 at 1:13 pm
(188) Sandy says:

ladies-
my bioness rep just left my home-he had to re-adjust my electrode placement slightly to get my foot to stop inverting (it was starting to turn inwards & i would feel like i was walking on the outer portion). it was perfect when i first started but things changed… now i don’t feel like i am going to twist my ankle.

marion-call your rep & get yours adjusted too-mine feels like it did in the beginning now. rep said sometimes it just needs to be slightly adjusted.

amy-i have been using the bioness for 3 months now. i feel like i am walking slightly better when i don’t have the bioness on–sometimes–not all the time! 3 weeks is not enough time to have your body reverse your poor walking habits. you need more time. this does not cure your walking probs–it just makes it easier to walk when using it-& then, in time, your body learns how to walk properly again & it becomes easier to walk w/out the bioness. even jonna uses the bioness to this day. i realize you are in a time crunch w/ renting the bioness & that is horrible for you. perhaps if you called your rep you could find out if this is your best option since you have to deal w/ the double wammie of having both legs affected. i feel so bad for you! i wish there was something i could do! would chocolate chip cookies make it better? i could make some for you & send them to you. i wish it was that simple. someday i am going to get a “MAGIC WAND” & we can all meet & have a party & i will wave my wand over all of us & we won’t have to deal w/ this anymore…….what a party we will have!!

May 4, 2009 at 6:06 pm
(189) Jonna says:

It is always a pleasure to get on and read the new comments. Sandy the party and “MAGIC WAND” sounds great.

Just like this crazy MS we have the use of the Ness L300 is a little different for everyone. There are many factors that affect how quickly or slowly we see inprovement to walking. I have a good friend that has been in a wheelchair for a number of years. Each year that I would see him I would get a new picture of the two of us. He always had me wait a minute so that he could stand for the picture. A couple years ago as we were talking he told me that he wanted to show me something. He stood up took my arm and said lets walk. He made it about 15 yards and then needed to go back to his chair. I talked to one of his care takers and she told me how hard he had been working to walk again. He has since gotten the L300 but he most likely will never walk like you and I. He pushed himself hard enough that at his daughter’s wedding he was able to dance the father daughter dance. He only made it part way through the song but that was a huge self victory for him.

We are all going to respond differently to the L300. Some will see results faster and others may have to work harder at it. When I first started using the L300 I would get excited because of the things that I was able to do while in physical therapy. I would go home and after an hour or so I was unstable once again. I could not wait for my next PT appointment. The first 2 months I used it I could only use it during my PT appointments. Each time I went I could notice little difference. I then had the option of getting a unit for home use. I did that and rented it just to make sure it was going to be worth the money. At the time we bought the L300 the decision was based on knowing that I was walking better, I hadn’t fallen and I didn’t have to use my cane. I did’t know how much I was going to be able to do but I had a piece of my life back and I didn’t want to lose it agian.

Please remember that it is going to take time and dedication. The amount of time is going to be diffent for all of us.

For me I was thrilled that I was able to hike up Diamond Head and for my friend it was getting to dance with his daughter and walk 30 yards with me that was a huge accomplishment.

I wish you all the best.

May 4, 2009 at 7:44 pm
(190) Marion says:

Thanks, Jonna. You’re the best.

May 5, 2009 at 3:21 pm
(191) Marion says:

I’ve now been using the Bioness for about 2 1/2 weeks (I had some down time because my originally unit was defective.) It has real potential for me. I used it today for about 3 1/2 hrs. Only problem is that by the time I’m done using it for the day, my legs are desperately tired. Also, I’m now officially joining the I-feel-the-plastic-thing-in-the-heel club. Has anyone resolved this issue? I’ve tried several thicknesses of shoe inserts – from the thin ones Bioness provides, to much thicker ones (which still work with the sensor). After walking about 1/2 hour with it, my heel starts to get sore and gets more sore as I continue. Does anyone have a suggestion on how to deal with this? I’ve tried insert thicknesses all the up to where it won’t work with the unit (can’t sense it). I’ve even put a Dr Scholl’s cushion on the bottom of my heel. Still no good. What do you think?

May 5, 2009 at 5:07 pm
(192) Sandy says:

marion!! welcome to “the club”. i haven’t found a solution to the heel sensor. some days i feel it–some days i don’t. i try to ignore it completly. if you figure a solution please let me know.

May 5, 2009 at 8:17 pm
(193) Marion says:

I called Bioness tech support on the heel problem and they said I’m the first they’ve ever heard that has this problem. I don’t believe that at all. They said I need to ask my PT about it, which is how they pass the buck.

May 5, 2009 at 8:30 pm
(194) Diane says:

Hi Marion,

I had that problem way back and I told Bioness about it but it seemed to fall on deaf ears. To ask the PT is a poor answer. PT is in charge of rehab not design which is Bioness’ area. Some days I wanted to take my shoe off an throw it because it bothered me so much and I also tried the thicker inserts. This is one of the 3 reasons why I went to the Walkaide. My Bioness Rep said she totally understood my reasons and was sending my suggestions on to Corporate.

May 5, 2009 at 9:32 pm
(195) Sandy says:

i will call bioness in the morning & see what they tell me. this is a prob they should have a solution to. i don’t believe marion’s complaint was the first they have heard of this prob either!

May 6, 2009 at 9:52 am
(196) Julie (Guide to MS) says:

Good morning, ladies (and others) – I have been following you all since I posted this blog. I am thrilled that you have found each other and been able to help each other (and yourselves) work through frustrations and celebrate successes.

On that note, I wanted to give you a “heads-up” that you might be getting some company here soon. I reposted this blog in my newsletter coming out today, highlighting all of you and your mutual support here in the comments section. I hope it’s okay – I really didn’t want any of my readers who are experiencing foot drop to live for a second more without getting to know you. I also think you all provide lovely examples of people who are saying, “enough is enough!” and fighting back.

Thank you. It has been my pleasure getting to know you and I am proud that you ended up on my site. Take care of yourselves, my friends.

May 6, 2009 at 10:43 am
(197) Sandy says:

julie-i would love to read your newsletter. please tell me how i can do so.
thanks!

May 6, 2009 at 10:57 am
(198) Julie (Guide to MS) says:

Hi Sandy (and anyone else who is interested)-

To sign up for my newsletter, just go to the top of this page (or my landing page at ms.about.com), where you will see “Free Multiple Sclerosis Newsletter!” at the top of the right hand column, and a place to enter your e-mail address. I would have posted the link directly to the sign-up page here, but that has not worked for me in the past. Anyway, it’s a weekly newsletter that comes to your e-mail inbox every Wednesday. Thanks for the inquiry!

May 6, 2009 at 12:43 pm
(199) Jonna says:

Julie I have been wondering if you were checking in on these comments. I personally wanted to say thank you for bringing the information to your blog. When I went to do the TODAY Show I told myself that I was able to make a different in one persons life the show was a success. The response has been phenomenal and you have helped get the word out.

I also wanted to let you all know I was able to get some information for you all about the heel sensor problems. Below is the information that I was given. There was a picture of this that was on the e-mail I got but I was unable to get that part to copy over. If you want to e-mail me at frog6826@ymail.com I will e-mail you the picture.

The sensor can be moved to a different part of the foot (away from the heel) to help with this pressure. Additionally, if the performance is best with the sensor under the heel a “cutout” should be made in the insole that fits the shape of the sensor. This will create an even surface of sensor an insole and cure the problem as well.

May 6, 2009 at 1:06 pm
(200) Marion says:

Thanks, Jonna! I sent you my email for that picture. I understand that you can cut out the shape from your insole. But the plastic right on your heel wouldn’t be uncomfortable?

May 6, 2009 at 1:20 pm
(201) Marion says:

Julie, thanks so much for the blog! No matter how much our family/friends support us through MS, NOBODY can understand what we go through better than others with MS. This is the first time I’ve participated in a blog and I’ve gotten a HUGE amount of support from Sandy, Diane, and the others. As I’m aging, my MS is getting worse but I’m not going down without one hell of a fight.

May 6, 2009 at 3:22 pm
(202) Sandy says:

marion-i am so pleased i have supported you. when talking to family/friends i refer to you as “my friend marion-from the blog” they all know you!

on to the heel sensor-i just called bioness & they told me i could move the sensor up towards the front of the foot slightly so as to help w/ the heel sensation problem. i am going to give it a try-will update later…

May 6, 2009 at 5:00 pm
(203) Amy says:

Just a quick note. I just spoke with my orthodics man and I mentioned to him about the heel sensor. He said to carve out a space in your insole and fit it in the space. He has other patients do this and it works great.

May 6, 2009 at 5:12 pm
(204) Diane says:

Hello everyone…I am so happy that Julie has this blog for us all to meet and talk because we do learn from each other and no one understands the frustrations better than the person who shares the same issues. Having a good week and then a bad week can make you think maybe you were imagining the good — it’s just the MS coming and going and tricking you. Years ago, people just sat down and gave up (as my older neurologist said when I asked him to sign the precription to try the Bioness — “Just get a cane or walker”. needless to say, I called my MS specialist and here I am today walking better. We want answers and we deserve to have the best life possible — now if the insurance companies would understand so that others would not have to go without due to cost. Some days I really do not feel like doing exercises but you just have to push yourself. I love hearing everyone’s progress and solutions. Keep up the good work everyone.

May 6, 2009 at 5:56 pm
(205) Tresa says:

I was a jogger. Now I walk slowly and carefully so I don’t fall because of this damn “drop foot” thing. My left ankle has been sprained so mant times. When it hurts a lot I put on a lace up ankle support.
My foot doc had me fitted with this huge plastic boot which clicked as I walked and I could only wear 1 pair of sneaker that he pulled the lining out of. It sucked.
I have tryed the walk-aide, but insurance will not cover it yet. Each year I call to check that maybe the will pick it up, but
NO not yet. Its been about 2 years.

May 7, 2009 at 10:37 am
(206) Heather says:

My daughter just finished a month of PT training on the Bioness, only to learn that her ataxia prevents her applying the shoe insert and knee cuff as precisely as is required. Also, she cannot manipulate the hand held device by herself. The only way she could use the product would be if someone else got her set up each day. So far, at 42, with SPMS, she lives by herself with an aide only part time. This was a major disappointment–for all of us in the family.

May 7, 2009 at 11:21 am
(207) Marion says:

Heather, have you tried the Walkaide? That way you only have the cuff to deal with and not the control unit and shoe insert.

May 7, 2009 at 11:54 am
(208) Marion says:

I’ve been trying to fix the feeling-the-shoe-insert thing and here’s what I came up with. The cut-out of the shoe insert method doesn’t work for me because my heel directly on the hard plastic is uncomfortable. The simply moving the sensor forward a bit tactic (toward your arch) wasn’t effective because the sensor must still be under part of your foot’s heel and that was uncomfortable. But here’s what I did so that now I can’t feel the sensor AT ALL – wouldn’t even know it’s in my shoe. First, move the sensor on the velcro pad as far as possible toward you arch so the unit still operates properly. I now only have a very small amount of the sensor on the velcro pad (I didn’t want to waste another velcro pad) but it doesn’t slip at all. Then take one of the foam inserts (Bioness gives you a couple but I like Dr Scholl’s Double Air Pillow Foam Insoles – in drugstores) and cut the heel off an inch or so from the bottom, so when inserted in the heel of your shoe, it comes right to the bottom of the sensor (in its new placement) but doesn’t cover it at all…just touches the bottom of the sensor. Replace your shoe’s insole on top of this and walk on! This uses both strategies mentioned earlier (moving the sensor forward and leveling the sensor to the rest of your foot, as in the cut-out method.) I use one Scholl’s insert (heel cut-off piece) on top of one of the Bioness foam inserts (again, just the heel cutoff piece) because that is the proper thickness for me. The heel cutoff pieces can be moved to any shoe. Let me know if this works for anyone!

May 7, 2009 at 8:29 pm
(209) Sandy says:

heather-
i agree w/ marion-have your daughter find a walkaide dealer & try that.

i don’t want to look stupid but…what is SPMS? i’ve heard of PPMS & RRMS, but not SPMS.

marion-
i am going to try your new contraption-i think you may be on to something.

May 7, 2009 at 8:55 pm
(210) Diane says:

Marion, you should be hired by Bioness or at least trademark you design correction!! Good thoughts — keep us posted on how it continues.
Heather — definitely have your daughter try the Walkaide. It is only one piece and can be put on with one hand. Very important to make sure you have the new cuff design which fits the leg and the larger sticky sensitive skin electrodes. There should not be a charge to try no matter how many times you try it. I was fortunate enought to have two wonderful O&P people who let me borrow it for an afternoon and then when I committed, they let me have it for the weekend until mine came in. Good luck!! Keep us posted.

May 8, 2009 at 7:30 am
(211) Marion says:

Thanks, Diane. I think we all have some suggestions for Bioness. For example, they should redesign the battery case sticking out of the side of the shoe, make it smaller if possible,make the clip smaller, make it a more neutral color, and redesign the clip so that it can lie along the top of the shoe and “disappesr” more.

May 8, 2009 at 7:32 am
(212) Marion says:

Sorry. Typing too fast. Word I meant was “disappear”.

May 8, 2009 at 3:28 pm
(213) Diane says:

Marion, I agree…my suggestions were as you said, make the shoe sensor on the outside clip smaller, maybe they could make the inside shoe sensor out of a softer material, make the cuff smaller (I don’t think it needs to be 5 inches, do something so you can turn the sound off and keep it off permanently on the remote.

May 9, 2009 at 2:33 pm
(214) Sandy says:

i have a bruised area on the back of my calf, on the leg i wear the bioness. it is like it is “pinched” sometimes when i am squatting down w/ the bioness on. is anyone else experiencing this?

May 10, 2009 at 7:16 am
(215) Marion says:

Sandy, is your cuff too small or maybe the velcro straps are too tight? I think a few people have mentioned that you don’t need it too tight. My cuff is a small and I don’t tighten the straps at all but when I take it off I do have an imprint on the back of my leg but no bruise and the imprint goes away.

May 12, 2009 at 8:42 am
(216) Sandy says:

does anyone use the Wii? i read in a ms magazine that it really improves the balance in ms patients.

May 12, 2009 at 6:23 pm
(217) Marion says:

So I have tried my strategy of moving the heel sensor forward and putting heel pads in my shoe for several days. Problem is that while you can’t feel the sensor at all, the extra pads in your heel are uncomfortable after a while. So I’m just trying to get used to the sensor being moved toward my arch without the heel pads. Sandy, we have a wii and yes, you can really work up a sweat. Use the sports game that comes with the wii. My balance isn’t bad enough to use it but I believe it could help. Rayman Raving Rabbits is another very active Wii game.

May 12, 2009 at 8:46 pm
(218) Hal says:

I have been using the Bioness in therapy for about two months. I am just waiting for a verdict from the insurance company. But just using it a couple times per week has got my foot working much better. Almost to the point that if insurance turns it down I won’t be that upset. But I would like to use it a little longer just to see how much better I can get.

May 13, 2009 at 10:58 am
(219) Susan says:

Has anyone tried wearing shoes with a recessed heal so that the toes are higher than the shoe?

May 17, 2009 at 5:19 pm
(220) Sandy says:

marion-try this-w/ regards to the heel sensor. i moved the sensor up towards the toe of the foot so that 3/4 of an inch was still on the gray pad. then i cut out a horse-shoe type thing out of the foam pad that came w/ the bioness. i made it so there was more pad at the back of the heel area & the sides were slightly narrower. END RESULT…so the heel sensor goes in the shoe. then i put the horse-shoe looking thing in the heel of the shoe. the sensor sits in the open area of the horse-shoe. there is padding on either side of the sensor & behind the sensor so your foot doesn’t feel the sensor as much. FINALLY put the regular shoe insert in the shoe-on top of the horse-shoe thing which is on top of the sensor. this is how i have been doing it since we started discussing this matter. some days it feels good. other times i can feel the sensor…but it is not as bad as it was before. this sounds like a hard thing to follow all these instructions–if anyone needs further instructions please don’t hesitate to ask.

May 20, 2009 at 7:17 am
(221) Sandy says:

don’t loose your wristband to the remote…bioness charges $20 bucks for a replacement! YIKES!

May 20, 2009 at 3:48 pm
(222) Kara says:

Hal, don’t let it go…I was walking much better, actually when I didn’t have the unit on. It seems kind of awkward walking with the bioness. I tried to just use the “training” mode 3x/day for a few days to see if just the “exercise” would work just as well (I had hoped to possibly buy just an FES system to use a few times a day rather than invest in this bioness). The effects didn’t last very long and I started regressing some. Then some of the bad old walking patterns start emerging again. The combination of walking with the bioness on and using the training mode gives you optimum results. It’s expensive but hopefully it will be worth it. Good luck with your insurance.

May 20, 2009 at 9:10 pm
(223) Kim says:

Does anyone use the L300 on both legs? I am new to all of this. I have my first appointment to test the L300 next week.

May 21, 2009 at 2:58 pm
(224) Kathie says:

I have been working with the bioness L300 for about amonth.My walking has improved greatly, but I have encountered a foot eversion problem. the rep is going to my PT session tomorrow to help me solve the problem.
There is a gal who has 2 of them and she is an inspiration. Did a jig in front of us! She had been using 2 braces and crutches and is now free of them.

May 21, 2009 at 3:31 pm
(225) Sandy says:

kathie-
several of us have dealt w/ the eversion problem. the electrodes just need to be re-positioned on your leg.

how wonderful for the gal that uses 2 bioness rather than the braces/crutches.

May 24, 2009 at 1:11 pm
(226) Kim says:

Since the sensor is in the heal can you run with the L300?

May 25, 2009 at 10:35 am
(227) Jonna says:

The L300 is not set up to help with running. Sure you may be able to jog. When I first started using the L300 I asked the same question. I was told that the unit will only keep up with me going (I think it’s 4 mph). I was at the gym right away to try it out, at the gym we have a track that is a 10th of a mile. At first I wasn’t able to make it the full lap before the foot drop would be back. At that time I would walk a lap or two and then try to jog again. I was able to adjust the intensity but as my leg would get fatigued I would have to remind myself not to over do it. I was able to work up to be able to make it a full lap without footdrop being a factor. I walk more than I try to jog but it sure feels great to be able to jog even if it is just a short distance.

May 26, 2009 at 4:26 pm
(228) Kim says:

Jonna, thanks for the info on running. I am not in too bad of shape … yet. I can walk OK for a little while and run a few yards. I still try and play tennis (doubles only). Since tennis is a stop and start exercise I was hoping the L300 would help. I only move a few steps at a time for the ball but by the end of the match my feet are too heavy and I can’t get to the ball. Luckly, I have good doubles partners that understand my limitations and run all around me.

May 28, 2009 at 10:34 am
(229) Sandy says:

good morning!
i am getting very dry, almost callous like, areas where my electrodes go. is anyone else experiencing anything like this?

June 1, 2009 at 9:59 pm
(230) Jonna says:

Kim I am thinking that the L300 will be helpful with you playing tennis. One of the great things that the L300 has done for me is let me shoot around/play basketball. Prior to having the unit I remember going to the gym to shoot around. I knew I couldn’t play full court anymore but I just wanted to shoot around. It got soooooooo very frustrating when I would shoot the ball, it would bounce off and I wasn’t able to run over to ball so that I could take another shot. The L300 has changed that I can run/jog that short distance on the court to get my own rebound. So good luck with the tennis.

Sandy I haven’t had this problem with the areas where the electrodes are yet I do deal with having beyond dry skin. There are times that I get areas that are rough, dry and leather like. I have used creams that were given by the doctor to help out with this. Good luck with this. The creams that I have been given are soo heavy and sometimes oily that I only use them at night and make sure that I wear long night pants and/or a long sleeve shirt.

For the past few weeks I have only been able to check in a few of times. Mid May I was in Hawaii for a week. I was there as a volunteer with the MS Society. We were getting the MS 150 Bike Tour rought and details worked out. I then was back home for a week before leaving for Atlanta, GA. This time I was with some of the Bioness staff at the Consortium of MS Centers. It was a great experience, this was the 2nd year I was able to go to the consortium.

June 8, 2009 at 10:44 am
(231) Marion says:

So here’s an update. I’ve been using the Bioness for about 2 months now. I don’t seem to limp as badly without the unit on but I don’t really see any huge improvement in my walking. I still have to put it on and off about 10 times to get the right placement before I start out with it. It definitely does let me walk longer than before and my legs no longer get terrible fatigue and pain at the end of the day. And I mean not at all! I’ve heard that you can put OTC cortisone cream on your leg under the electrodes and it keeps skin problems away and doesn’t hurt the electrodes. OR you can use Topicort (RX) cream after you take the unit off for the day to prevent problems. All in all, I believe I will probably buy the Bioness after my trial period is up.

June 11, 2009 at 11:01 pm
(232) Sandy says:

my story…
i’ve been using the bioness about 4 months now. i walk much better w/ it on because i don’t “hike” my hip up anymore. i also walk better when it is off–but that is not too often cause it works so well i keep it on most of the time. i still have skin issues which i treat w/ rx cream. sometimes it takes me several times to get the placement right-more often i get it right the first time. i do have to reposition it numerous times during the day depending on if i squat down or sit & it gets slightly bumped. it is not a big deal. i put it on in the morning & don’t take it off until i go to take a bath before bed. i still have issues w/ not bending my knee when i take a step but i am doing some extra ‘stepping’ exercises. like marion, i also am able to walk for long periods without fatique. i use to have a ‘love-hate’ relationship w/ my bioness…now i love it all the time. we don’t ‘battle’ like we use to. i am extremly pleased i have it! today some lady saw me walking through a parking lot & said “that looks horrible to deal w/” i just laughed & said “you ought to see me try to walk without it–i love it!”

marion-i have been wondering how you have been. i am so glad everything is going well for you!

i would love to hear how everyone else is doing w/ using the bioness!

June 15, 2009 at 2:36 pm
(233) Marion says:

Sandy, I have recently developed skin problems from the Bioness. What rx cream are you using and when do you use it?

June 16, 2009 at 5:47 pm
(234) wim (from Holland) says:

Hi there,

At the moment I use the L300 for about 16 months. I’m very happy with it.

My walking is not normal because I have also problems with my upper leg, also due to MS (oractually Devic’s desease). But it is a lot better than without.

If you are interested (and you understand my English) I will later tell more about my experiences. I just found this discussion right this evening and it is now bed time for me.

Regards, Wim

June 17, 2009 at 10:42 am
(235) Sandy says:

marion-i use triamcinalone cream. i put it on when my skin is not perfect. talk to your bioness rep, they are suppose to come out w/ a new electrode that is made of cotton in august. perhaps they have a suggestion for you until that time. are you getting a rash or what?

wim-welcome! we used to chat on this site everyday. there were many of us sharing experiences & problems. things have changed. i think marion & i are the only ones that check it anymore. i don’t know what happened to the others. i check it nearly everyday still just to see if anything is going on. marion & i were 2 of the original gals on the site & now i guess we are the only ones who still check it. it was interesting when there were several of us discussing our concerns/problems. do you have skin problems?

June 18, 2009 at 7:28 am
(236) wim says:

Hi

Up till now I haven’t had any problems with my skin. I should get desperate if skin problems cause me to not wear the L300.

But I have also been warned by the therapist of Bioness that I should have longer breaks during the day to prevent skin problems.

Since half a year I did’nt have a consult at Bioness, but next week I will have. Then they will demonstrrate the new electrodes.
Then I wil also have to choose for the service program I wil have. Complete service (inlcuding free replacement of broken parts) or a low level of service. Have you a vision about that?

In Holland the insurance doesn’t pay for the L300. They say there ar longduring tests to see if the L300 is positive, but I didn’t wait for that.

In Holland I don’t know anybody else with the L300. I have written some articles about it but nobody gave a reaction. For a lot of people it is probably to expensive I suppose. The half of it can be paid by de tax but the other half is still a lot of money.

see you next time.

June 19, 2009 at 12:44 am
(237) Amy Kuhlman says:

Sorry about not checking in for quite sometime. The reason is, the person that was letting me use the L300 needed to give it to another patient. I felt I had not really had a chance to see if it would work for me. When I did use it, it just seemed like alot of work. I know it sounds strange, but 3 pieces, only certain shoes, not getting the electrodes to work right, it was exhausting me. I do want to try the walk-aid and see how that works for me. My summer is so busy that I just don’t have time to bother with it. The L300 thru my balance off worse than it is and I worried if that would improve. I did not feel safe walking unless I was next to a wall or holding on to an arm. Would my balance improve? Do any of you think the heat effects your skin? I hope you are all doing well.

June 19, 2009 at 4:24 am
(238) wim says:

My answer on the question about the balance. In my case the therapist also put a stream to a muscle of the upper leg (when standing still). How it works I don’t know, but I have a lot more stability.

Does anybody know something about the firm Bioness. I know that it originates from Israel, but I don’t know anything about how stable the company is. How much L300 do they sell, how many people work fot it, in which countries do they operate?
In Holland they have one small office. I think less than 20 people work for it. In Europe there are 2 offi es, one in Holland and one in Italy.

I have a question about the skin problems. What causes the skin problems? Is it the electricity going through your skin, or is it the material that is such a long time a day in contact to the skin?

June 20, 2009 at 11:40 am
(239) Marion says:

Hi, Wim and welcome to the blog. I’ve used the Bioness for just over 2 months and I’ve just made the decision to purchase it. As it turns out, my insurance will pay for a little of it. Alot of people develop the skin problems. I understand that it isn’t from the shocks but from the electrode pads on your skin. For this reason, Bioness tells you to take the unit off every few hours for more than 15 minutes to give your skin a rest. Wim, if you’ve used the unit for 16 months without developing any skin problems it seems highly unlikely that you will get them. Most people seem to develop raised red bumps and other problems after about 3 months. Amy, my balance was thrown off at the beginning of using the Bioness because the placement on my leg wasn’t right…..just a tiny bit off what your gait should be can impact balance. Don’t know if this is what is happening with you. I must say that the more I use the unit, the more my walk improves WITHOUT the Bioness on. Even if I don’t use it much during the day (if I’m at the computer most of the day, I don’t wear it much due to fear of the skin problems), I no longer get the pain and fatigue in my legs at the end of the day at all! Most days I wear it as much as I possibly can.

June 20, 2009 at 10:27 pm
(240) Sandy says:

amy-with regards to the 3 pieces required to use the bioness. in the beginning it was sometimes overwhelming w/ the shoe sensor, cuff & remote. however, now after using the bioness for 3 months, i don’t even think too much about it anymore. it is just part of my day & it is not a hassle anymore. perhaps when you have a little more time (hopefully in the new future!) you will have the same luck as i. on balance issues-my balance is not great but it is better w/ the bioness on. i seem to have better ‘control’ w/ it on.

June 21, 2009 at 3:35 pm
(241) Marion says:

I don’t mind the 3 pieces at all. I actually like the hand unit that controls the cuff because it allows me to instantly change the strength, put the unit on hold or turn it off. I carry it in my pocket or purse.
I haven’t found any shoes I can’t use the heel piece in. The shoe must just have an inside sole that you can pull up part way (even if the insert is glued in you can do this). I wear my topsiders barefoot with the piece under the insert which I pulled up 1/2 way with some effort. I can put the piece in leather dress pumps by using the spacers that came with the unit.

June 21, 2009 at 8:04 pm
(242) Jonna says:

Hello all, it has been a while since I have written anything. The month of May was quite busy for me. I started volunteering at the local MS Society office, I went to Hawaii for a week as a volunteer helping set up the MS 150 bike tour. This will be the first year that Hawaii has the bike tour and I have road in the Wyoming bike tour twice so I was able to give my opinion on different things. Then at the end of the month I went to Atlanta GA for MS Consortium. I was at the consortium with Bioness. Bioness had a booth in the exhibit hall. During the times that the exhibit hall is open the doctors, nurses, therapists…… walk around to check things out and talk to people at the different booths. I found out that I am not walking as well as I was last year at the consortium. I am there to tell my story and then many times the different people want to watch me walk with and with out the device on. Yikes, it was obvious that I have not been wearing it as much as I should. Since then I have been to the gym more and now that the weather is nice I plan on going for some walks.

During the month a May when I was sooo busy I had gotten an e-mail from another person that was just going to start her trial month and she had the following question for me.
“How would you say that life has changed for you since you started using the Ness? What are you able to do now that you weren’t able to do ‘BTN’ ['Before The Ness']?” She had also been reading all the entries on the blog and asked that I copy and paste the question and my answer for all to see my response. Since I started using the Ness L300 I have not had any falls. I now longer have to use my cane. Now when I walk through the mall I don’t have to think about needing to tell others, NO I have not been drinking, I just have MS and my legs don’t work like they should. My walking had gotten to where I was not able to walk in the MS Walk so I just volunteered and I now can walk. As you saw on the TODAY Show I am able to shoot around again. I had gotten to the point that I could go to the gym, sure I could shoot the ball but then I was not able to run/jog over to rebound the ball. I can now run/jog to the ball and get another shot off. In my younger days I was named most athletic female in my class and went on the play Jr. College basketball. It was the most frustrating thing ever to shoot the ball and only be able to walk slowly to get the ball and shoot again. No, I can’t play full court but I can shoot around again.

Hi Wim, Sure I can get the answers to your questions about Bioness. I know I have been told some of the thing you were asking but this crazy thing call MS that we all have has done a number on my memory. As I tell may people, I have put my ‘frontal lobe’ in a wheel chair  I will shoot a couple e-mails off and try to get some answers. Just like most everything the economy has rough. I know that they have had to lay some people off.

Hope you all have a wonderful week.

June 23, 2009 at 8:26 pm
(243) Sandy says:

does anyone know if you need to continue using the “training mode” when you are 4 months into using the bioness? i used it when i first began using the bioness-however now i use the bioness all day & i don’t seem to ever use the ‘training mode’ anymore.

June 24, 2009 at 12:39 am
(244) Cath says:

so new to this: have it on loan for a week (both legs!) after PT for about 2 months during which they fussed and mussed with it. needless to say, during this week – i have already explored parts of our huge backyard that i couldn’t before :) )

i have 2 forearm crutches that the PT insists i use for now at the very least – grumble. the big thing for me was to “relearn” in PT to strike my heel FIRST. wow. amazing what 15 years of MS managed to do to my poor muscles (and of course, my wee brain!).

so far so great. i am on the weeklong training protocol and next week we make the big financial decision…

June 24, 2009 at 1:19 pm
(245) Kim says:

Yesterday was my first day walking with the L300. The first appointment was like many of you said, they couldn’t find the right spot but the PT found it in three tries yesterday and I was walking well in a few minutes. Thank goodness!

The PT ordered the L300 for me to try out. How long does it take to get the device once it’s ordered?

June 24, 2009 at 5:32 pm
(246) Jonna says:

Hi Sandy, I don’t know that you have to continue to use the training mode. I have used it from time to time just because. I am thinking that I should use it a little right now being I have gotten a little weak.

June 29, 2009 at 3:37 pm
(247) wim says:

Last week I had a controll at Bioness (after 16 months). I heard this autumn a trial will start in the USA. This trial with about 200/300 people and a controll group has to prove the benefits of the L300 and that health insurance should pay. The trial will take two or three years.

June 30, 2009 at 10:16 am
(248) Sandy says:

i wonder where it will take place in the USA. has anyone else heard anything about this? i did see where the american physical therepy association endorsed the L300. i thought that was very encoraging. although…any of us using the L300 can speak highly of its ability to help us walk.

July 2, 2009 at 8:48 am
(249) Cath says:

that control is a great thing! hopefully it will work – i am picking up my 2 bionesses (bioni? :) today and away we go. they will file for insurance and we will just have to see. apparently, bioness has about a 30% success rate with getting insurance to pay (some? all?) after appeals. i am so excited to finally have these after months of trying and working with them at PT!

July 2, 2009 at 7:12 pm
(250) Sandy says:

cath-
i am so excited for you! i am curious to know how you do w/ 2 of the bioness units. i wish you luck! if you read all of our comments we wrote from the beginning you know things can get challenging while you learn all about the bioness. do not give up! if you have probs or questions please write them on this blog. i still check this site nearly daily & i don’t know about everyone else-but i bet marion does also. i have been using the bioness about 4 months & it was frustrating in the beginning but i wouldn’t give it up now!

July 3, 2009 at 11:41 am
(251) wim says:

Hi

I’m sure that if the right population is taken for the trial and a same group for the controll group the L300 will have good results.

But the point is of course how many skin problems will be found. What is the long term effect of the electricity through the skin and on the muscles. Is the L300 just a temporarely solution (other problems cause worse walking)?. I’m convinced that a lot of people will find amazing effects, but what wil be the results of the test???

If I know something more about the test I will tell you. In Holland the total amount has to be paid by yourselves (half of it by the taxes). So good walking is only possible if you have money. It’s unfair!

July 3, 2009 at 9:25 pm
(252) theresa sartorio says:

I have tried to get the bioness unit paid for by the insurance company and failed. Does anyone know of some one who is not using their unit and would like to sell it? I have a 13 year old son who has spastic cp. If so contact me at theresasartorio@comcast.net or if any one has suggetstions of how to pay for the unit.
theresa

July 4, 2009 at 1:23 pm
(253) Cath says:

as instructed :) here goes! day 2 with my own two units; it’s the price of a new car… sigh… i am still surprised at how much better my walking is just over the week of the loaner and the few days with my own.

someone above mentioned the bruising or problem with the cuff being too tight. i have that too. i did not have it with the loaner but do with my own now. i have weekly checkins at the orthotics place and next week I will discuss that with kathy.

functionally, having two presents a few problems: the cuffs and sensor thingys can clank up against each other. that is also a function of “how” i walk; i have hip strengthening exercises (gee!) to add to what i can do to ameliorate that.

i have two crutches to go with the two units that i can’t wait to get rid of. that’s my goal – months down the line. i walked with nothing (but should have) til the pt for this and the pt would not let me do a thing til i committed to the crutches for stability!

most amazing i think, in addition to walking much more closely to “normally,” is my lack of exhaustion – the energy. that was unexpected. and delightful! and to be able to explore parts of my own yard i haven’t for years and years – worth it, even if the mosquitoes in the way back of our yard love me! :) happy 4th to all. i will continue to update and ask questions too.

July 4, 2009 at 1:45 pm
(254) Marion says:

Sandy, yep, I’m checking this blog regularly. I’ve been using the Bioness for 3 months now and my walking without the unit has improved amazingly. Sometimes when I’m just around the house, I have to remind myself to put the thing on. Today I played basketball for the first time in years. I’ve also explored the woods around my house as I’ve never done before. I find the folks at Bioness extremely responsive to my questions/problems. I’m now officially done with my PT –no more appointments scheduled! Bioness hopes to put out new cloth electrodes (Sept?) to alleviate the skin problems. As Sandy says, it took us a while to get used to and understand how the FES works with us individually (everyone’s different), but once it was done this has been SO-O-O worth it! I’m really upset that more people can’t try it because of the cost!!!!! Wim, please do keep us posted about the test. If the Bioness is just a “temporary solution” I’ll still take it!! Cath, I don’t understand how the cuff can be too tight. Why can’t they just get you a bigger strap size???? My cuff was initially too loose so I went down to a small strap size. Theresa, also google other blogs about the Bioness and post your request there too.

July 4, 2009 at 9:38 pm
(255) Sandy says:

cath-
loosen your straps significantly! i was the one who had the bruising probs. when i made the straps looser the bruising & in-dents improved greatly. i was very surprised at how loose i could have the straps & still have the bioness work. try it!

July 6, 2009 at 12:52 pm
(256) Cath says:

Marion: tee hee, I think I have the largest straps – I have big calves! Sandy, thx for the suggestion! I will try it this afternoon.

Curious: this is week 2 for me and I am supposed to walk 3 hours w/ it today. Does anyone else find it hard/annoying? I do go for a few longish walks per day, then around the house, or while I am on errands, but I have been on the computer this morning for ex., so I went to Subway and parked as far away as I dared (yay to that) to add to my minutes. Is that how others worked it? I am pretty fit – I am a swimmer but with all the walking with this I haven’t had much time or energy for the lap lanes :(

I feel like it’s like Weight Watchers: counting points~

July 6, 2009 at 2:00 pm
(257) Sandy says:

cath-
it was a hassle in the beginning! i took long walks & then just kept it on while i did things around the house. i tried to do things where i needed to be moving. i would go shopping at walmart & try to ‘kill 2 birds at 1 time’. it is sooo important to follow the schedule bioness gives you. don’t forget to do the ‘training’ also. if you are sitting at the computer you could easily do it then. once you get to the longer wearing times i just wore it when i was going to be most sctive. there were times when i was just doing laundry & cleaning–but i wore it. that way you get use to it. i hope i helped. let us know if you have any more questions!

July 7, 2009 at 4:33 am
(258) wim says:

Question:
I’m using the L300 for more than 16 months and my experience with the electrodes is that if you often put off the L300 the electrodes get faster bad. Is that also your experiendce?

They say it is important to have it off because of the skin problems, but if you have bad elctrodes I can’t imagine that that is OK for the skin.
In summer time when I put it off often because I want to use the swimming pool or the beach I cannot use the electordes longer than a week because they get really bad. What are experiences?

A year ago the electrodes cost me €12,50 a pair (about 15 dollar) two weeks ago they cost me only €9,50 (11,30 dollar). What do you pay?

July 8, 2009 at 2:51 pm
(259) Charlie Saylor says:

Hi! I have learned a lot from reading your posts. I have tried the Walkaid 2 or 3 times at the HANGER Orthopedic Group in my town and it worked great the first couple of times, but the last time(mid-April) the same tech was unable to locate the spot to stimulate the nerve,saying it must be buried deeply in the muscle and that as much as he’d like to sell me the Walkaid, he’d have to recommend an AFO instead. I felt so depressed until I learned that the Health South Rehab facility was now offering the Bioness. I’ve worn it at 9 PT sessions and love it. I plan to rent it for the month before purchasing it, but have some concerns regarding the on-going costs over and above the initial $6200 that my insurance will not cover any of. I read some of you talking about a rep coming to to your house to tweak any necessary adjustments. Since there are no reps in my midwest town (pop. 100,000), I’d have to make a PT appointment for any adjustments that couldn’t be handled by Bioness over the phone and I’d probably have to wait up to 3 weeks to get an appt. that I doubt my insurance would pay for. How often have any of you needed such adjustments? Also, I thought I had read on some MS forum that Bioness supplied the electrodes as needed, but am told they cost $16 a pair which would run a minimum of $416/yr. And on top of that, Bioness suggests a $500/yr insurance policy to repair or replace any part not functioning right after the 1st year. As you can tell I’m worried about the ongoing costs, but I guess it’s worth it to not be totally wiped out from trying to drag around a few hours. Thanks for listening to my comments. Charlie

July 8, 2009 at 3:19 pm
(260) Cath says:

fyi – had my weekly checkin at the clinician today. mentioned to her it was all great, tho going up stairs was no different. we went to the stairs and guess what? i am tall and have size 11 shoes:so the sensor at the back of the shoe of course doesn’t hit the steps. a ha! no big deal – heck, going up the stairs isn’t that bad and it’s not why i bought it. but i never thought of that!

July 9, 2009 at 7:12 am
(261) Marion says:

Cath, the sensor directly under my heal hurts so I have always worn it a bit forward toward my arch (that way I can’t feel it). This eliminates the going-up-stairs problem…the cuff turns off. Also, I turn the unit off if I’m going down long stairs because my heel catches the stairs when my toe is lifted.

July 11, 2009 at 9:18 am
(262) theresa says:

I will be entering a 30 day trial for the foot unit . The young lady was not very clear on certain items. The PT appointments, is that covered by your insurance if it is usually covered? She told me it was my responsibility to find and out set up. Some say you have a rep from the company. When I asked I was told she would see if that could happen. Does anyone know if you can rent the unit for more than one month?
Any help would be helpful since I do not get clear answers from my rep.
theresa

July 11, 2009 at 8:11 pm
(263) Marion says:

First of all, I would recommend that anyone considering a Bioness set up a “google alert” on “Bioness L300″. Everyday, or as often as you wish, google searches the web on those words and sends you an email with the appropriate articles. I’ve done this for a while and get 1 or 2 emails a day, including Bioness in the news, patient testamonials, etc. Or you could do the same with the Walkaide.
Theresa, I had to pay for each and every PT appointment out-of-network of my insurance, I don’t know if anyone else did. Also, it was as of April 1 of this year that Bioness went from 3 months trial to only one. Problem with that is that people seem to develop skin problems at around the 3 month mark. Good news is that Bioness expects to come out with cloth electrodes around Sept. to solve the skin problems. I had a rep meet me at my PT’s office when I had a problem in the first month (no extra charge), but I never had one come to my house. Hope this helps!

July 11, 2009 at 8:47 pm
(264) Cath says:

Theresa, I think the gist is: you are basically trying PT for a month, and Bioness may be part of that PT. Or at least that is how it was for me. Once the physical therapists – and is does depend on insurance; I did have a co-pay for each visit – deem you good for the Bioness, they have one on-hand to use during visits. They know the local rep and work with her – and soon enough, you will get to meet him or her when they come to watch you during PT. You get their business cards and once it comes to buying-maintenance-service, loans, etc., you deal directly with the rep. Buying is a quirky thing here in NJ, as I was doing PT thru the hospital but as of some date (June 1st?) hospitals could no longer act as an intermediary to help you buy an orthotic device (or that’s what I was told). I continued with the PT but bought the device from an orthotic-prosthetic place literally across the street – same rep, etc., and they deal with the same PT team as well. I was told that there was no rental any more but a loaner for a week (free). For me, it was an easy decision as i had been using it in PT for so long but I can see that for others it could be a tougher decision. Definitely, the way I saw it it was part of PT – and the rep was introduced along the way. But it could be different for you, I guess. Good luck!

July 12, 2009 at 3:34 pm
(265) Sandy says:

marion-
i never knew about the google alerts! i am now signed up for them & look forward to receiving them.

theresa-
check w/ your insurance-my insurance covered everything for me. (PT & bioness). when i had a prob or the PT had a prob the rep came to PT to help solve the prob. when PT was over & i had a prob the rep came to my home to solve the prob. bioness at 800-211-9136 is also very helpful. i live near a big city so my rep is near-by. i don’t think there is a rep everywhere. i went to PT until they had taught me everything i needed to know about the bioness unit so that i could function independantly
good luck to you!

July 13, 2009 at 7:53 pm
(266) Lucy says:

Hello, somebody get back normal foot up after using bionessL300? Please write about it.
Thank you

July 14, 2009 at 9:18 am
(267) Sandy says:

i will be traveling by plane. does anyone have any advice in using the bioness while flying?

July 14, 2009 at 2:22 pm
(268) theresa says:

I have 2 questions/
Sandy where are your from?

How do you do a google alert

July 14, 2009 at 4:04 pm
(269) Sandy says:

theresa-
i live on the outskirts of st louis, mo.
go to “google alert” & type in “bioness L300″. then you can put in your email address & then whenever bioness L300 is mentioned they email you. i signed up a couple days ago & received my 1st notification today of some post on a blog.

July 15, 2009 at 9:44 pm
(270) Phil Meyers, CO says:

As an orthotist who provides the Bioness Ness L-300, I wanted to echo all of the positive respones to folks having marvelous success! I have been providing braces for footdrop for 26+ years and have been working with FES for about one year now and have had marvelous outcomes, especially with MS. One misconception I’ve read hear is that Medicare pays for it. ONLY in certain incomplete spinal cord injuries and those just happen to be the population I’ve had the most difficulty getting consistant stimulation responses in! Go figure! Simply put, if you have Multiple Sclerosis, GO GET TESTED!! Life is not a dress rehearsal folks! Chances are great that you’ll test well and then, well, it simply comes down to the finances. The WalkAide is less expensive but it basically sucks when compared to the Ness L-300. I could go into greater detail but won’t waste our time. Anyway, good luck to all you nice folks…
Phil

July 16, 2009 at 3:52 pm
(271) wim says:

Last year I took a plane from Holland to Egypt. No problems at the airports, but I took a description with me.
Before I went I was a little bit concerned about it because it was made in Isreal and that is put on it. But no problems at all.

I read that someone paid 16 dollars for a pair of electrodes.

July 19, 2009 at 9:10 pm
(272) Lori says:

I am using the NESS L300 for my one month rental period. Here are some issues that I am having. I have hyperextension in my leg (left) which this is not correcting and since I have worn an AFO for about 5 years now, my ankle is weak. I have an aircast for support but it’s not cutting it. When I wear it, my foot feels even number. Anyone else have this problem? Am I just not being patient? My PT appts. have been spent on readjusting. I’m getting frustrated. My insurance company has denied payment so before I invest, I need to have some hope that this could work for me.

July 20, 2009 at 10:55 am
(273) Cath says:

re: travelling; my Bioness rep says they don’t have a card (think of the card that Betaseron, etc., provides you with – not sure if it does anything but it’s nice to have!). the office manager at the orthotics clinic, who is wonderful, is in the process of writing up a card (or a note, like wim refers to) that you should probably carry with you. i don’t know if it’s ok in an x-ray machine – again, the bioness reps will answer that but i would think it prudent to carry a card/note from the prescribing doctor or facility.

July 20, 2009 at 6:11 pm
(274) Sandy says:

lori-
when you say your left leg “hyperextends” do you mean it stays straight & kind of stiff when you walk?
if so…i kind of have that problem also. i am really having problems w/ bending my knee consistantly when i walk.

i have been using the bioness for about 4 1/2 months. the bioness makes your toes pull up when you walk–but that is it. there has to be some type of exercise we can do to get us to be better able to walk normally. i don’t know what exercise to do though…

does anyone have any words of wisdom for lori & i?

July 20, 2009 at 7:15 pm
(275) Anne Tarbox says:

I tried an L300 last week for the first time and had another session at PT with it today. This blog has been a great help in the last week. I have learned a lot from all your experiences. I am a 57 yr. old woman who was diagnosed w MS 21 years ago. This FES device is the first bit of hope I’ve had in the last few years as my gait became stiffer and slower and slower. It is exhausting to drag a leg that just doesn’t work the way it should. Today with the L300 I walked quickly (for me!) down the hall and didn’t have to look at my feet as I went along. I climbed stairs without a big swing to the side of my week leg. It is a miracle!

July 20, 2009 at 10:16 pm
(276) SJL says:

Hi everyone
I am so thankful to all especially the Today show that led me to the Bioness. I have been living with MS for 20 years and I am 56. It is probably slow progressive (not remitting) and I do not take any med.
My walking has gotten worse and I usually hold on or use a walker.
I have used the L300 for 3 months and it does help alot. I swim and go to the gym(walk more)
So far I still have problems with fatigue. Any suggestioins?

July 20, 2009 at 11:30 pm
(277) Lori says:

Sandi- yes, my knee is not bending, but extending beyond “neutral” position. My AFO has an f-stop to prevent this from happening. My PT has given me ankle exercises to strengthen ankle with a thera-band. She said that the NESS can only correct hyperextension to a small degree so mine may be too severe? Going again tomorrow to PT. Maybe yet another adjustment will help.

July 21, 2009 at 7:53 am
(278) Sandy says:

lori-
i would love to hear what your pt says to improve your knee bending. i step up on a step & then down again for exercise to help me bend my knee. i try to do about 200 nearly every day.

i sm going on vacation this morning for a week. i will be back next week to discuss this more.

July 21, 2009 at 8:28 am
(279) Marion says:

About 3 1/2 months with a Bioness and here’s something interesting I have found. My natural gait is for my feet to be pretty straight forward, not turned out (pidgeon)at all. The Bioness, we’ve found after months of trying with my PT and a rep, can’t accommodate this gait, given where my foot-lift nerves are. As a result, my foot turns out a little too much or goes forward more but inverts. I have to settle for something in between the 2 but it never really matches the straightness of my good foot. As a result, my balance always feels a little bit off. The interesting thing is that when I take the unit off, my bad leg’s foot now duplicates the angle that the Bioness has “taught” it, which is somewhat “off”.

July 21, 2009 at 6:09 pm
(280) wim says:

In Holland bioness had made a letter in English for airports and such occasions. If someone is interested I can mail.

July 22, 2009 at 8:10 pm
(281) john says:

so far, no one has addressed the issue of a severed peroneal nerve…does anyone know if the walkaide or bioness can correct foot drop in that case? i severed the peroneal nerve when i broke both bones in my lower leg. the knee and ankle are ok, but i assume the nerve break is below the knee.
(mental note to john: the next time a nylon mooring line breaks under strain, get out of the way!)

July 22, 2009 at 8:56 pm
(282) Marion says:

John, I haven’t heard anyone comment with your problem. I would imagine it depends where the nerve severed. If the connection is still there between the nerve that lifts the foot and the foot, in theory I don’t know why it wouldn’t work. Sandy is a nurse and when she gets back from traveling perhaps she could give an opinion. In any case, it’s definitely worth asking your doctor.

July 24, 2009 at 8:18 pm
(283) Cath says:

definitely, John, I think you need to take it up with a doctor before pursuing further. i would go to the Bioness web site, find a local facility (probably hospital-affiliated) and go from there. from experience – though i have a wonderful neurologist who i see every six months – a rehab doctor, or physiatrist, would be a good one to start with if his facility offers Bioness. that’s who in the end wrote my Bioness RX and he is very knowledgeable about what the system does and doesn’t work for.

July 25, 2009 at 3:22 am
(284) Mary says:

I HAD SPINAL SURGERY AND SOMETHING HAPPENED
TO MY NERVE AND I HAVE HAD DROP FOOT FOR 9
YEARS. THE PLACE WHERE I GOT MY FOOT BRACE
(WHICH IS NO FUN TO USE AS IT MAKES YOUR LEG
SO STIFF.) CALLED AND TOLD ME LAST YEAR THAT
THEY HAD SOMETHING WITH A SENSOR AND THEY WANTED TO TEST MY NERVES WITH IT. I DON’T RECALL THE NAME OF IT, MAY HAVE BEEN WALKAID.
THEY PUT THE ELECTRODES ON TO SEE HOW MUCH MY
FOOT WOULD GO UP, AND THERE WAS JUST A LITTLE
MOVEMENT. THEN HE PUT IT ON MY HUSBANDS LEG
AND HIS LEG JUMPED UP AS HIGH AS HIS KNEES.
IS THE THE SAME THING? THE COST WAS NOT NEAR
AS MUCH AS YOU ARE SAYING. I THOUGHT WELL, I
HAVE NO MORE NERVE FUNCTION, AND THE DR SAID
I WOULD HAVE NO HELP AT ALL.

July 26, 2009 at 1:57 pm
(285) Beverly Flankey says:

For the url I put in my address.

I watched the Today segment with Johanna on the bioness L300
I am so excited and I am a mild MS patientbut I do have foot dropsy which I have a real gait problem. I also watched a CBS segment about the walk aide I don’t know which to pursue but I want help now. I finally got diagnosed in 2002 and I had negative results before since 1982 when I had my first symtoms
I have been to Mayo cinic in Rochester MN and the diagnosis was confirmed-I have a brace that is not that helpful and formed a corn on my foot from wearing it-also limited certain shoes. I do not know which device to use? How do I chat with someone who can help me to get started. I see a neurologiatbut do ot have an appointment until Sept. and I see a general family practioner for anything elseother than MS.

Bev.

July 27, 2009 at 12:44 am
(286) Beverly Flankey says:

Hi Jonna,I apologize for getting your name wrong. Hi all- I am not a good typist and when in a hurry will make a lot of mistakes. I have gotten a lot of information from you ladies chatting back and forth. Thank you Tomorrow I will call to start the process of getting a walk aide first as it is closer for me for the evaluation etc. I guess I need to try both and see which I like. I take no meds now and progression of the MS has been slow but I do tire easily. I also have RLS and having to walk for this condition can be very annoying when I want to sleep. My MS episodes have been 20 years apart but I am left with something from each episode-like double vision the first time-dizzy and slurred speach did not stay a permanent problem the foot delay I first felt walking- that becme foot dropsy and sometimes feels like I can’t pick it up to move the delay is longer than my actions which can cause me to trip-seems I have good times and some bad times. but a permanent problem I do some stretches and some exercises but going for walks would be great(walks are what I used to do daily about 6 miles a day) now only when I shop. Walking with a cane but do better slow with a cart to push. I have had to quit climbing ladders. I shall continue reading all your comments and I will contribute when I have an issue needing discussion. Bev.

July 27, 2009 at 3:53 pm
(287) Marion says:

Beverly, welcome to the blog! My MS is also mild compared to some others. But I have RLS which effects me day and night (almost worse than the MS!) I would definitely try the walkaid as well as the Bioness. I went with the Bioness because it was higher tech and could respond to any grade of surface. I’ve had it almost 4 months and my walking without the unit is almost completely normal (for a while, then legs get tired and I limp again.) Here’s what I want to warn you about, pertaining to the RLS. With either of these FES units, the stimulation may make your leg jump when you walk. I take a low dose of Mirapex during the day and it completely solves this problem. Not sure if you get RLS during the day or not.

July 30, 2009 at 3:37 pm
(288) Kim says:

I will be receiving the L300 tomorrow. I am very excited. What training program will I have to go through? Will it vary depending on the PT and the individual?

July 31, 2009 at 9:51 am
(289) Sandy says:

kim-
congrats! you should already have a PT who is trained in the bioness. they will teach you all about how to use it. it took me about 12 visits to finally get everything! i would encourage you to follow the schedule that bioness provides to begin wearing it. you start w/ only wearing it 20 min a day & it takes 3 weeks to build yourself up to wearing it all day. it is hard to keep to that schedule because once you start wearing it, you realize how wonderful it is, and you don’t want to take it off! FOLLOW THE SCHEDULE!! your skin needs time to adjust to the electrical stimulation.

if you have any questions-any at all-just ask. marion & i check this blog frequently & we have both been using the bioness 4-5 months & we are not experts but we have encountered many probs & we may be able to answer your questions. i am sure there are many others who may have some good advice also! the beginning is frustrating as you learn to use the bioness & learn how your body responds to it. YOU CAN DO IT!!

August 1, 2009 at 6:35 am
(290) Marion says:

Kim, welcome to the club! If this works for you, it will change your life.

August 1, 2009 at 3:25 pm
(291) Sandy says:

FYI-TO ANYONE USING STERIOD CREAM

please know that using a steriod medication on your skin where the electrodes go can cause the skin to thin from long term steroid use. my dermatologtist said three times a week -if needed- was the max it should be used. she suggested using vaseline petroleium jelly if dry skin is the issue. i am currently trying a cream that you can buy over the counter to combat the dry skin prob. thin skin where the electrodes go is the last thing any of us need!

August 3, 2009 at 11:17 am
(292) Marion says:

Thanks Sandy!

August 4, 2009 at 9:11 pm
(293) Anne says:

I have submitted the paperwork to Bioness and sent in the second form for the one month rental. I have been using a device for 3 weeks with my PT but am anxious to get started with my own unit. How long did most of you have to wait?

August 7, 2009 at 8:33 am
(294) Marion says:

Anne, mine took 2 full months!

August 7, 2009 at 10:46 am
(295) Beverly says:

Hi Marion,
thanks for the information.
I did get a walkaide and the difference it made is wonderful I recently had guests visiting for 5 days and I had gotten the walkaide the day before their arrival and (my cousin) my guest said she could not believe the improvement in my walk that I had from the last visit with her I am so glad to have this -I did not try the bioness as I was in such a hurry to have this. It was such a difference that after my initial try I called them back in a few days and told them I wanted it like yesterday. So i received it one week from the day of my initial evaluation. The back ache I had is gone-apparently had the backache from circumventing my leg when i walked. Thanks to all of you on this blog for your help in my making this decision.
Love it.
Bev.

August 10, 2009 at 1:11 pm
(296) Marion says:

Anne, I’m so sorry but I misread the post of yours that I responded to. I thought you were asking how long it took for my insurance to respond to Bioness’ request. From the time I signed my 1 month rental to the time Bioness got the unit to me it was only a couple days. Sorry for the confusion!

August 10, 2009 at 2:27 pm
(297) Anne says:

Thanks Marion. Your first answer was the correct one. I was told I could get the rental quickly but I chose not to because unfortunately Bioness could not guarantee that my insurance would let me put it toward purchase if I did it before the pre-approval process. So now I am waiting (impatiently!) for paperwork to travel back and forth between my PCP, insurance and Bioness. I used it again today at PT and walked on a treadmill. The fun thing is that my PT has become a believer too! She has only used it with a couple of people previously that didn’t like the feel of it and chose not
not to continue. She’s as anxious to get me started with my own cuff as I am!

August 11, 2009 at 5:40 pm
(298) Beverly says:

Hi, i am still delighted with the help the walkaid has given me. when i was being evaluated my RLS was kicking in. The technician asked how long I have had spasticity? i thought i had RLS what is the difference in the two? Marion- i am waiting for my call from the MS clinic to find out if they do the Botox injection in the walls of the bladder– before i knew i had MS i had urgency which i was told that it was probably the MS that caused this bladder condition.I remember your blog about this injection and none of the meds i took work anymore-and i’ve tried many different ones I like you would like to not take any as they seem to make me retain water. i also took oxybutynin i was supposed to take 3 a day but i cut it to two as i had such dry mouth at night and they don’t work anyway done Bev.now and i won’t refill. I hope i can have the injection and have the results you expericed. Bev.

August 12, 2009 at 9:35 pm
(299) Bev. says:

Hi Marion
I read another blog about the MS and Bladder control and the injection was not listed as an option to the problem.
I haven’t heard from the MS clinic yet if the botox injection is a option how did your neurologist happen to tell you of this?
Bev.

August 13, 2009 at 2:07 pm
(300) Kim says:

Are there any problems getting the L300 wet? I was afraid to take a walk with it in the rain yesterday. What about if it gets wet due to sweating. It gets hot in August and I tend to sweat a lot.

August 14, 2009 at 6:18 pm
(301) Marion says:

Beverly, my urgency and incontinence was so bad that I had to regularly see a urologist. I’ve been through every drug out there from santura to oxybutinin to vesicare all at increasing dosages. It was my urologist that told me about the procedure. I would think any urologist would know about it but not all neurologists. I’ve been almost 10 months medication-free and have just scheduled my next injection because I think it is beginning to wear off. This procedure truly changed my life. I’d recommend you go to a urologist and ask about it! If he/she doesn’t do the procedure, they should know who does in your area.

August 14, 2009 at 6:42 pm
(302) Marion says:

Beverly, forgot to address the RLS part of your post. RLS seems to be referred to as a type of spacticity. When I was trying the Bioness, it actually set off my RLS when the stim occurred. I’ve completely resolved this through taking an extremely low dose of Mirapex (see my earlier post.)

August 15, 2009 at 10:31 am
(303) Beverly says:

Dear Marion,
I do take mirapex but I have had to increase the dose more than once I now take o.25 mg 2x a day and sometimes I have to take 3 especially when I take a long car ride. I am going to have a botox injection from a neurologist that is with the MS Center at Vanderbilt,Nashville. Sept 4th is my proceedure. I was on oxbutynin last and it did not work for the blasdder control-and I think it may have been the cause of the terrible stomach ache I had-which has gone away since I quit taking the oxybutynin. I sure hope the injection works they told me the botox is only good for 3 months but I am hopeful that I get the results that you got. The walk aide is still working for me. I like the fact that it works when I am barefoot and wear sandals.I had it realibrated yesterday so I can walk faster
Bev.

August 15, 2009 at 11:16 am
(304) Bev. says:

Sorry misspelled it is recalibrated.

August 18, 2009 at 7:36 am
(305) Marion says:

Bev, I really hope the injection works for you! I also hope it is a urologist doing the procedure and not a neurologist. Oxybutinin was my first med for the issue and the side effects became too much to tolerate. They will tell you the MINIMUM that the injection will work (3 months) but it should hopefully last alot longer. Remember that my issue was extremely bad and I’m going on my 10th month (though it is starting to wear off.) On the Mirapex, I assume you take .25mg at night and .25mg during the day. If so, have you tried splitting the day time dosage into 2? .125mg in the morning, .125mg in the afternoon, then .25mg at night? Your situation sounds exactly like mine!

August 19, 2009 at 1:15 pm
(306) Susan says:

I’ve had Botox injections in my bladder at least four times. The key word being injections. It is not just one injection, but multiple injections in your bladder muscel. It only works a few months for me and I decided it wasn’t worth it. I’ve had good luck self cathing and can wait 2 hours before voiding. It used to be every 15 minutes. I normally get up once in the night. Last night I got up 3 times and didn’t have anything to drink before bed so I am a little concerned about that.

August 19, 2009 at 3:45 pm
(307) Sandy says:

hi girls…i am just curious, do they inject the botox through the abdomen? isn’t that quite painful? they have to do numerous injections?

August 19, 2009 at 4:59 pm
(308) Marion says:

There are several injections, depending on what the urologist thinks is right for you but you wouldn’t know 1 vs 20 injections as you’re in “twilight”. The whole thing only takes 15 min. The procedure works (or doesn’t) differently for different people (also depending on what’s causing your problem). If it only worked for 3 months for me, I don’t know if I would do it either. It also may be necessary to cath occasionally for a little time after the procedure.

August 19, 2009 at 5:02 pm
(309) Marion says:

Sandy, no cutting for this procedure. Beverly, hopefully your doc explained all risks/possibilities. If it works for you like it did for me, it will change your life.

August 19, 2009 at 9:18 pm
(310) Susan says:

I’ve had it done by a urologist at Layola Univ. in Chicago and by a urologist in the Univ. of Iowa Hospitals. It is done through the urethra. I definitely felt every injection but it wasn’t terrible. If it helps it is worth it.

August 20, 2009 at 11:57 am
(311) Beverly says:

Hi all, I am tyuping this for the 3rd time it disappeared off of my computer twice and so i gave up trying to post any thing. A urologist is doing my injection of botox for the bladder control on september 4, and he is a member of Vaderbilt in Nashville. It was scheduled from The MS Center at Vanderbilt, Nashville.i had called and requested that as none of the meds i have taken have workedand this is something that botered me a lot.Thank you Marion for the suggestion of when to take the mirapex-i shall try that. i can pick up my foot when i think about it and the walk aid does that also and the zap makes me. i sometimes can still lose my balance i am a former hairdresser and i still cut my hsbands hair and my own a lot. my RLS has been a problem when i forget to stay on a regiment of mirapex. when i paint (art) i never get them when i concentrate on that but i could get them relaxing and watching TV. as long as i remember to take the mirapex i am okayi do not take anything for the MS-i took baclofen early on but being a muscle relaxer i think it made my bladder control worse and ddn’t seem to do anything for the MS. So the neurologist i saw at that time said i didn’t have to take it. i prefer to take as little prescriptions as possible-i have acid reflux also and a grandmother that died of esophagel cancer so the heart burn is no longer something i have- tried to do with out and immediately got the heartburn on only toast. Marion what did you experience from the procedure? Sandy I read your comments and I hope i experience Marions results. No i did not hear anything about risks and side effects. what are they? enjoy all the comments and i usually read this blog once aday.
Bev.

August 20, 2009 at 12:13 pm
(312) Jonna says:

Hello All,
I wanted to let you all know about a new program that Bioness has, it is called the Peer User Progam. There are bi-monthly conference calls that you can be a part of. On the call you get a chance to have person-to-person connection with other Bioness technology users. The calls are manned by individuals with personal experience using the Ness L300. There is also a couple of the Bioness staff members on the call. This is a confidential forum to ask questions and learn from others. For dates and times of upcoming conference calls you can call 877-HOPE145 (877-467-3145). I am one of the long time users that is scheduled to be on some of these calls. We have had our first call and it was great. Hope ya all have a wonderful day.

August 20, 2009 at 1:23 pm
(313) Bev. says:

Hi Susan, i read your blog on the botox bladder injection and sorry to hear that you didn’t get the results that Marion did-i hope that i get hers.
I am not familiar with the catheter thing so if the Botox is not good I may try that Sounds okay but what do you do if you are out for more than 2 hours?
Bev.

August 21, 2009 at 10:51 am
(314) Marion says:

Bev, I’d recommend you call the urologist’s office have them discuss risks with you. There are risks to any procedure…from the anesthesia alone, if nothing else. I had my 2nd set of injections yesterday. My experience was quite different from Susan’s. I don’t know how she felt every injection! Susan, did you have anesthesia. I experienced some soreness afterwards but Pyridium takes it right away. I went and had lunch right after the procedure, though I was a bit tired.

August 21, 2009 at 11:27 am
(315) Susan says:

I can go longer than 2 hours if I don’t have anything to drink. No matter where I am there is usually a restroom nearby and I always wear a pad. The last time I had Botox treatments was 1 1/2 years ago so I don’t exactly remember if I had anethestic. I seem to remember it was injected in my bladder before the Botox.

August 21, 2009 at 11:54 am
(316) Marion says:

They now give a twilight anesthesia which is very short-lasting and no nausea (thank god, I always throw up after general anesthesia!) It goes in an IV and works rather instantly. You wake up about 45 min or so afterwards and it’s all over. You can’t eat or drink after midnight the day before if the procedure is scheduled for the morning. Bev, there is a risk that it may not work or work only for 3 months (as in poor Susan’s case!).

August 22, 2009 at 10:18 am
(317) Sandy says:

marion-
have you ever gone back to PT to have your bioness “tweeked”?

August 22, 2009 at 5:19 pm
(318) Marion says:

Sandy, no I haven’t. The power level (1-9)is still perfect for me and I adjust the electrodes myself.

August 22, 2009 at 9:34 pm
(319) Donna says:

I am convinced that this will help me, but the intensity of the stimulation at times borders on pain–is this normal, how are you dealing with it and if anyone has used the bioness, has it really helped???

August 23, 2009 at 12:26 am
(320) Sandy says:

donna-
welcome! we are glad you have joined our little group! if the intensity of the stim is painful then you need to have the settings adjusted. go back to where you got the bioness & tell them what you have told us. they can adjust it so it is more comfortable for you. if it is not comfortable you will be less likly to use it & that defeats the purpose of having it. until you get in to get it adjusted you can decrease the intensity of the stim by lowering the number that is on your hand held remote control. to do this #1-turn the unit on. #2-push the “-” button which is located at the lower end of the front of the remote. push it until it goes to a number 2 & see if that makes it more comfortable. #3-once you get the number turned down you need to press the button w/ the side ways “s” on it to put you in “gait mode”. if that is adjusted then you have to do that whole process each time you turn it on until you get it adjusted at PT.
i hope i didn’t confuse you. if you have any questions-just ask.

August 23, 2009 at 9:33 am
(321) Donna says:

Sandy–thanks so much for the quick reply. I will test that out–I am going back tomorrow to the orthotist–so many questions, concerns, etc., but if this will keep me walking, I will most like order it. The comments have given me some insight to the pros and cons of the bioness. How long have you been using the unit and has it been a positive experience? I will get back to you after my appt.

August 23, 2009 at 9:13 pm
(322) Sandy says:

donna-
i’ve been using the bioness about 7 months now. i joined in on this blog in the very beginning. i started writing comment #5 & still continue to check this blog daily. it has been such a help for me! if you haven’t read this blog from the beginning & you want some info on the bioness…start reading. marion & i have been on the longest & we speak of all our trials & tribulation & triumps as we get our units & learn how to use them. there have been so many people on this blog who will be able to answer any questions you have. bioness is also very helpful when you call them.

good luck & let me know how everything is going!

August 24, 2009 at 8:50 am
(323) Donna says:

Sandy–I followed your suggestions, and it was much more tolerable. I was able to wear it for 4-5 hours before I really became uncomfortable, so I would imagine that with time, I may be able to extend the usage. I still don’t ‘trust’ it yet, but towards the end of the day I was able to walk -slowly- but efficiently-with only one cane. I am going to the orthotist today to discuss options. Thanks again.

August 24, 2009 at 10:16 am
(324) Sandy says:

donna-
bioness has a wearing “schedule” you need to follow. it starts out slow-at 15-20 minutes a day & slowly builds up to a full day. using this schedule should take 3 full weeks to build up to wearing it all day. your muscles can’t tolerate 5 hours just starting out. FOLLOW THE SCHEDULE! your body needs to adjust to the bioness. when you go for your appt today see if they have a copy of the schedule. if not call bioness at 800-211-9136 they can get one to you. don’t wear it for 5 hours at a time. your leg muscles will be so sore!!!

August 24, 2009 at 12:13 pm
(325) Marion says:

Donna, Sandy is right! You MUST follow the schedule for this to be successful! Once you are wearing it all day, be sure to follow the directions on how often to take it off to let your skin rest! At the top of this blog, when I first started, I was terribly worried about my ubersensitive skin reacting to the electrodes. But since I’ve followed Bioness’ “off time” I haven’t had a single skin problem.

August 24, 2009 at 4:09 pm
(326) Bev. says:

Hello everyone,
I keep up with reading this blog it is so good and it is so helpful thanks to all of you. I again today had another lesson to get me to use the walkaide properly-what I like is I am not too bad and foot drop was the only thing that gave me fits as my foot stuck and I tripped on everything so I have been able to avoid those problems-I walk fast and still need to slow down-ever notice in a restaurant the hostess that seats you unless you have a cane with you they walk so fast you can not keep up with them so having the cane helps me to slow down and the machine will work well for me. What i like about the walkaide is shoes are not a problem and the control is attached so it is alwas there-I use reader glasses and I am always looking for them and if I had to keep track of the control i would continually misplace it. If after a year I am having trouble I will try the bioness for my foot drop-I had some PT and walking really slow I could do it-so far I do not seem to be getting any worse. The bladder control is my most bothersome problem right now and I am hopeful that that will soon be resolved-Risks I am not worried about.
My husband will drive me for the treatment and I can sleep afterward . I love to sleep in the car about 0ne block and I am asleep. I don’t wish my life away but Sept. 4 can’t come soon enough. Thanks Marion-the regiment on mirapex is working well with the RLS.
Bev.

August 24, 2009 at 5:31 pm
(327) Marion says:

Bev, I’m so glad that splitting the Mirapex has helped you! When it’s in your system constantly it seems to really make a difference! My RLS is no longer an issue, as long as I remember to take the pills. Also, let us know what happens after Sept 4. I apologize to the readers of this blog that I’ve gotten off the Bioness subject but alot of readers here seem to have MS so maybe it can help them (or people googling botox+bladder)! Bev, your body may need to adjust after the procedure so don’t expect a miracle the first day. You may have to cath (have them show you how BEFORE you leave on that day), you may have increased frequency for a few days. Also, Pyridium is excellent for the soreness afterwards with no side effects except orange urine, so see if they will give you an RX for that or something sinilar.

August 24, 2009 at 5:33 pm
(328) Marion says:

Bev, by the way, if splitting the Mirapex continues to work, ask your dr to change your next refill to .125mg tablets. Then – no splitting.

August 26, 2009 at 10:02 am
(329) Bev. says:

Hi everyone,
I am going to ask my local doctor to get me a PT and then I will join the wellness and fitness center when the PT shows me what machines and how to use them. I did this before in a wellness center in MN where I lived before but things look different here so I need new training. at that time I can see if they have used the bioness and I can ask them about it.
Bev.

August 26, 2009 at 11:35 am
(330) Sandy says:

bev-
do some research first. call bioness & ask if there is a facility near you that uses the bioness. then ask your dr for a referral to a PT at that facility. it will save you some hassle if you just start at the facility that uses the bioness. the one i go to has regular PTs in addition to the PT specialized in using the bioness. GOOD LUCK!!

August 28, 2009 at 8:00 am
(331) Sandt says:

hi girls-
i haven’t been walking as well so i figured the bioness needed to be ‘tweeked’. i went back to PT where i was trained w/ the bioness. they tested for strength in my legs/hips. my hips are weaker than they were when i got the bioness 7 months ago! no wonder i am not walking as well… they gave me some different exercises to do in addition to the stuff i do now and hopefully my walking will improve. we will see. if snyone else is having these probs you may want to look further than the bioness.

August 28, 2009 at 12:41 pm
(332) Bev. says:

Hi Sandy,
That doesn’t sound good and I pray for you to have a remission our miracle is only a help not a cure and we can have no episodes messing things up. My MS has been slow but I can tell that it is progressing. I can only hope for a true cure and it may not happen in my life time. I just increased the electric impulse in my walk aid-some days less and some more. Does that help you? Keep on fighting. I have a cousin that has MS and the day she was diagnosed she gave up and went to bed doing nothing-she has only gotten more consumed and a lot faster than need be.
Bev.

August 28, 2009 at 2:50 pm
(333) Sandy says:

bev-
i don’t feel this is an attack. i am just going to do the exercises they gave me & i think it will improve my walking. i will not give up & things are carrying on as usual, i just returned from volunteering at my son’s school for 3 1/2 hours. tonight we are going to the high school football game to watch my daughter dance. i am not sitting around, i am just not walking quite as good as i was. hopefully these hip exercises will help!

August 28, 2009 at 8:25 pm
(334) Donna says:

I brought home my Bioness today–they wound up lowering the stim considerably, primarily so my skin can tolerate the sensation. In a week or so they will begin to increase the numbers, but obviously, if it hurts, I will not wear it. I am very excited about what this will do for me. WIll keep you posted.

August 30, 2009 at 10:08 am
(335) Marion says:

Does anyone else with MS find that they don’t get many new symptoms but what they have just comes and stays? Seriously, I absolutely NEVER remit. Ever. I’ve had the same symptoms for years and I don’t get any new ones and these never go away.

August 30, 2009 at 5:33 pm
(336) Sandy says:

marion-
i feel the same way! i think the reason we don’t have ‘new’ probs is because we are on the medications (avonex-betaseron-copaxone). my ‘old’ probs stay w/ me too. i am soooo ready for a cure!

September 1, 2009 at 11:21 pm
(337) Cath says:

Hi all. I read your comments a lot but it’s been awhile since I put my two cents in :) ) I have now had the Bioness for 2 mos. For 70% of the time, I am in love with it. I have had “mechanical” issues – an Rf stim gave out on me; a charger was defective; I pulled out the wires (oops) on a foot sensor; etc., etc. Bioness has been helpful with resolving the issues, all covered under warranty.

I have read your comments re: hip strength and also stim intensity with interest and I have some comments and questions. I too have weak adductor muscles: I have some stretching ribbon from PT and exercises. It’s amazing; since “re-learning” heel to toe walking, I no longer hike my right hip up. That’s wild. But I don’t have great strengh (without the Bioness) to sustain it yet on its own. My physiatrist cleared me to do workouts with the fitness director at the Y – normally I swim – and today I was IN the fitness center, doing a wee bit on the treadmill, then more on the bike, then stretches – so I recommend anyone who has a PT script (say the visits are maxed out with insurance) or a copy of exercises they may have been given: find a great fitness director who can help you at your center. It’s NOT PT and not a replacement for it; I needed a dr’s note to start. But it’s just an idea. We need to strengthen what we have!

Has anyone else had issues with the stim being odd and intense at the start, like standing up? Mind you, I have two Bionesses – bilateral. So sometimes getting the two legs to fire up at exactly the right time is a challenge and the intensity feels VERY strong. The Bioness is amazing for me at long distances but it’s still a bit of a drag say, going to the bathroom – turn on, stand up, walk however far, find place to rest crutch, turn off, maneuver, etc., etc.

I too have now joined the club of the skin reaction folks. All I can say is I will NOT take the electrodes off for any more than several hours. I know it is some form of contact dermatitis – if they are off for a few days, yup, it’s gone but it comes back as soon as I put them back on. I treat with Lubriderm and antibiotic creme if anything looks red, and steroid creme on occasion. It keeps it fairly well under control and my clinician knows what I am up to. I want the cotton electrodes – NOW!!:

Anyway, all from me for awhile. The stories and sharing here are great!

September 2, 2009 at 10:30 am
(338) Marion says:

Bev, good luck Friday with your procedure. I’m hoping the experience will be more like mine and less like Susan’s. If so, you have no need to be nervous. You go to sleep, you wake up. It’s done. No pain at all from the procedure itself. May take a week for your body to adapt to the botox. May see increased frequency initally and have to cath for a few days. May see neither. My second time, no cathing. Much easier. Just try to leave the clinic/hospital with a bladder anesthetic like Pyridium, just in case you need it during the night!

September 2, 2009 at 3:13 pm
(339) Sandy says:

bev-
i have to apologize to you. when i mentioned about my hips being weak, you talked as if it was an ‘attack’. i said i just needed to do some exercises & it would improve…YOU were right!! things have slowly gotten worse over the past few days & today the neurologist said i WAS having an ‘attack’ & he put me on a month of prednisone. i really thought you were nuts when you thought it was an attack. i am sorry for having such thoughts!

i am looking forward to a mmonth on prednisone! i usually feel pretty good when i am on it. coming off it is sometimes a challenge but the next 2 weeks should be good!

September 3, 2009 at 9:20 pm
(340) Jonna says:

Sandy so sorry to read about this new relapse. Have you been put on a Solumedrol IV for a relapse. I see that you will be going on prednisone. Solumedrol is also a steroid, the way I understand it is that Solumedrol is just more powerful. Each time I have gotten Solumedrol I got 1 gram a day for three days. Some people then do a Prednisone taper but I have never done that. I have even heard of people getting a 1 gram for 5 days. Keep your positive attitude going. From time to time I get on and read how everyone is doing. You and Marion have kept this going and it is great reading all of the support and advise you two have been giving. It always bings a smile to my face reading how everyone is doing.

September 3, 2009 at 9:52 pm
(341) Sandy says:

jonna-
thanks for the encourgaging words! i have had the iv solumedrol before w/ a prednisone taper when i had a bad attack, however this is just a ‘mild attack’. i am having a little trouble walking & i am having right sided weakness but i have not stopped doing any activities. i am going back to pt & i hope to make it to the gym in the morning.

i am surprised you have never had a prednisone taper, esp after having 1 gram of solumedrol for 3-5 days! i have been on prednisone numerous times over the past 19 years. since i have been taking betaseron for the past 13 1/2 years, this is only my 5th attack. pretty impressive i think! i think the prednisone taper will work swell!

i am glad you think marion & i are giving good advice. i consider her a very good friend & enjoy coresponding w/ her immensely! i sure enjoy your words of advice though!

September 3, 2009 at 11:18 pm
(342) Jonna says:

Sandy have you, Marion or anyone on here thought about calling in to get in on a peer user call. There have been so many great questions. I have been on the first 2 calls and they went well. Many questions have been a lot like what you all have been commenting on. There are 2 calls this month and I will be on both of them. It would be great to have some of you on the calls. It is a toll free number and the call lasts an hour.

September 4, 2009 at 7:50 am
(343) Sandy says:

what time do the calls start?

September 4, 2009 at 11:16 am
(344) Jonna says:

September 10th at 4:00pm eastern time
September 24th at 7:00pm eastern tme
You will need to call 877-HOPE145 (877-467-3145) to get registered for the Peer User conference call. Once you are registered you will be give the 800 number to call and the access code.

September 4, 2009 at 5:26 pm
(345) Sandy says:

jonna-
the calls sound wonderful! those days/times will not work for me in sept. perhaps october will be better.

September 6, 2009 at 10:50 am
(346) Kim says:

I have been renting the L300 for the last mont and decided to buy it. It seems that I was one of the fortunate ones that my health insurace covered 80%. I went to my doctor to make sure he added all the correct buzz words (i.e. foot drop) to my records that the insuarnce company was looking for. If I didn’t ask for this specifically I don’t think I would have got approved. I hope this helps anyone else out there.

September 7, 2009 at 10:59 pm
(347) Jonna says:

Hi Sandy,
Through the end of the year there are 2 Peer User conference calls each month. October 8 Thursday @ 4pm ET and October 22 Thursday @ 7pm ET I am scheduled to be on the October 8th call. Each call has 2 long time users along with with a couple of the folks from Bioness.

Hi Kim,
Congratulations on getting your insurance to help cover

September 8, 2009 at 2:37 pm
(348) Marion says:

Bev, if you’re still monitoring this blog, how did your procedure go last Friday? Is everthing alright??

September 11, 2009 at 5:43 pm
(349) Donna says:

Hi again–I have had my Bioness for two weeks now–considerable tweaking has needed to be done, but after two hours of trial and error today, it seems to be satisfactory. I am so looking forward to using it, can tell I need pt for muscle improvement too. Will keep you posted –thank you for all of the advice and info I received by reading your comments.

September 12, 2009 at 1:09 pm
(350) Bev. says:

Hi Marion,

I did not get the proceedure yet-insurance pending . the urologist will call me when it can be done-did have the cysto and it will be right for me so now it is a waiting game.

Bev.

September 14, 2009 at 9:15 am
(351) Cath says:

Hello ladies (and a gentleman or two) – wanted to report in on some interesting contact dermatitis issues (yum! just great first thing Monday morning). I have had issues with it but am NOT willing to give up the Bioness til the cotton electrodes are out – after about 2 weeks of self-medicating (with cortisone and antibacterial stuff) I began to have itches elsewhere – my arms and trunk. Thought it could be poison ivy or an allergy to detergent, etc. Went to a wonderful dermatologist who is giving me better stuff to treat the contact dermatitis AND says the new itching is an “id reaction” (Google it!) to the initial dermatitis – your body thinks it likes being allergic (sure!) so creates another unrelated rash elsewhere. So we need to get rid of the initial dermatitis (as well as soothing the “id reaction”) and treating it better is helping greatly – that in turn will make the body turn off its “id reaction” which is VERY itchy (the dermatitis itself is not, fortunately). The Bioness people really wish I would give up on the device til the cotton electrodes are out but I am not – and now that the dermatologist agrees and has a plan we are good. Countdown to when the cotton electrodes are out though!! And per Bioness, I may well be the first data point to develop the “id reaction.” Ahh, the excitement!

September 15, 2009 at 10:12 am
(352) Sandy says:

cath-
congratulations! you win the prize for the most unusual issue concerning the bioness!! i hope your “id” improves soon!

September 21, 2009 at 10:12 pm
(353) Bev. says:

Hi,

It has been so good to read all the many comments.
Yesterday I had a great day-no foot drop and I walked normaly but it did not last. Strange but wish it were all the time like that.
I did not get the botox bladder injection-my insurance denied the request from the urologist. The cost would be about $20,000 so I will appeal the decision.
I see my neurologist thursday and maybe he can help me with this bladder problem.
Wish you all well and hope soon there will be a cure for this annoying disease.
Bev.

September 24, 2009 at 8:44 am
(354) Cath says:

Bioness apparently announced at a conference this week that the cotton electrodes will be out Oct. 1st!! This is a tremendous relief for me and others here. I don’t know if they are going to use them on all of the units or just if people develop the skin reactions.

I should have mine next Friday and the dermatologist and I have worked out a plan to make sure my skin is as healthy as can be before then!

September 24, 2009 at 8:56 pm
(355) Bev says:

Already sent it but not having a valid email address

September 28, 2009 at 1:56 pm
(356) Sandy says:

CLOTH ELECTRODES ARE HERE!
i received an email this morning from bioness notifying me that the cloth electrodes are here! i called bioness & ordered them over the phone. it was quite simple.

we should all get together for a party & ‘toast’ to no skin irritation! …mmm…lets meet at some beach!

September 28, 2009 at 9:39 pm
(357) Jonna says:

That is great news. I am ready for a beach and a party. At our ‘Peer User’ call last Thursday there was talk about skin irritation and how the new electrodes. I am sure you will but make sure to let us all know what you think of the new electrodes.

September 28, 2009 at 11:50 pm
(358) Cath says:

oh no Jonna… I am getting itchy worrying that you meant to say that the new electrodes cause skin irritation too? :) I mean, who the heck can be allergic to cotton?? (possibly some of us… I guess… sigh)

i am going to the orthopedic place I go to get it serviced, et al, on Thursday. they told me today they were mailed today and will be at their office Wednesday!

still getting the skin nice and pretty for then – really using the cremes I have, weaning off the Prednisone, and limiting the use of the Bioness – that was my one concession for this week.

i’m sure some of us will let you all know asap. i know they have to be kept wet or wet every 4 hours. we’ll see…

September 29, 2009 at 6:20 pm
(359) Jonna says:

Hi Cath,
I have no idea if the new ones will cause problems with the skin. My thought is that the skin should clear up. I am excited to see how they work. I may have to get a set just to see how they work.

Hey Sandy, Marion, Cath, Jean and who ever else is reading this, the next Peer User conference call is October 8th and will be at 4:00 Eastern time. It would be great to have you all call in. To get signed up you can call 877-HOPE145 (877-467-3145). I am scheduled to be on the October 8th call. Hope ya all have a wonderful day.

Too many people overvalue what they are not and undervalue what they are.
-Malcolm Forbes

October 1, 2009 at 4:32 pm
(360) Sandy says:

i just received my new cotton electrodes! they came quickly-glad i didn’t pay the $10 to have them shipped quick!!

it is quite simple…mark where your old electrodes are on your cuff…unsnap them…& snap the new ones in. ooo la la! did anyone else get theirs?

lets see how these babies work…….

October 1, 2009 at 9:40 pm
(361) Anna says:

Hi,
I’ve been walking with the bioness for about 10 days(trying it out) having trouble walking. Still dragging my leg and not bending my knee. I also think my fatigue is preventing me to walk well. Please help!!
What am I doing wrong?

October 1, 2009 at 11:51 pm
(362) Cath says:

just got mine today – Sandy, my clinician said and it’s very interesting – b/c they are slightly smaller the surface area is a bit different so the current comes thru differently. i don’t think it’s much but she used today as a good excuse to re-tool me and get a better response from my right foot (remember, i have them on both feet) – it’s a good thing. i have more hip strength now so she is able to fiddle with the settings more.

keeping them wet every four hours is not my dream, but they did feel good today! certainly a very different feeling than the pulling on and off of the old ones (shudder).

October 2, 2009 at 8:39 am
(363) Sandy says:

anna
notify your PT of what you said here. they are really the only ones that can help you. if you don’t have a PT, find one who is trained in the bioness in your area. you should have one since you have the bioness.

October 2, 2009 at 1:01 pm
(364) Anna says:

Hi Sandy,
I’m new to this site. I’m from Montreal, Canada. What does PT stand for?

October 2, 2009 at 1:21 pm
(365) Jonna says:

Anna,
I would have the same advice as Sandy. You should go back to your PT or whom ever it was that got you set up with the L300. One question I have is, was your leg still dragging when you were first set up with the L300. Make sure to have open communication with your PT. If everything was working good when you first left the PT with the L300 and then the next day or when every you find that your leg is dragging again you need to contact your PT right away to see if there is something that you can do or if they need to adjust something.

It was my experience that because I didn’t have to work as hard to walk that I didn’t get as tired when walking. This didn’t happen over night but little by little I could see that I could go further and do more.

In previous comments I have give information about the Peer User Conference Calls. We have another one coming up on October 8th, I would suggest getting set up to call in for that.

October 2, 2009 at 1:24 pm
(366) Jonna says:

PT – Physical Therapist

Now that I know y

October 2, 2009 at 1:33 pm
(367) Jonna says:

Hi Anna,
PT is Physical Therapist

October 2, 2009 at 1:44 pm
(368) Jonna says:

Let me finish my last thought.

Now that I know you are in Canada I made a call to see that the toll free 800 numbers would also be toll free in Canada. I found out that yes they should be toll free for those in Canada.

October 3, 2009 at 8:36 am
(369) Anna says:

Good Morning,

It’s me again. I have progressive ms, and wondering if that’s the reason why I’m having trouble with the bioness? The representive at Bioness says no,but…

October 5, 2009 at 11:11 am
(370) Jonna says:

Hi Anna,
The rep most likely knows details of your situation and so I would go with what he/she is saying. The reps are trained to be able to answers such questions. If you are not sure about what was said I would just ask for additional information that would support what they told you.

So do you think it will work for you to call in on the Peer User call this Thursday.

October 5, 2009 at 11:55 am
(371) Anna says:

Hi Jonna
Thanks for your help.

October 5, 2009 at 5:56 pm
(372) Jonna says:

You’re Welcome!!!

October 6, 2009 at 11:13 pm
(373) Cath says:

Anna, just know you have our support and I echo what Jonna says. You should NOT feel like you are on your own there without a PT or clinician whom you should be calling and checking in with. Sometimes the setting seems right in the office but the electrodes could slip or there could be an easy fix – OR maybe it has to be recalibrated. Be in constant contact with whoever prescribed it for you (is it a rental or a purchase; either way you need to be satisfied) b/c without a good solid week or so with it you will never be able to know if it is right for you. You definitely should not be made to feel like”it’s yours now go home and deal with it yourself” – if that is the case, you need a more supportive clinician! Good luck!

October 6, 2009 at 11:21 pm
(374) Cath says:

Anna, Jonna and Sandy are so right: you should be in constant communication with your PT or clinician (whoever prescribed it for you) – sometimes is works well in the office, but it can slip or the electrodes aren’t quite right or so many other issues. Don’t blame yourself or your MS – THEY have to try to get it right and they should be doing so happily. If it seems good at the office but the next day isn’t right, call them and get in there. Good luck to you – if your clinician isn’t too receptive find someone else (and maybe let Bioness know!). Let us know how it works out…

October 7, 2009 at 9:09 am
(375) Sandy says:

anna-
are you following the bioness “schedule” when you start wearing the bioness? it starts out only wearing the bioness 20 minutes a day & it increases daily. this is to help your muscles adjust to the stimulation. it takes 21 days to progress to wearing the bioness all day. this is very important! if you don’t have the schedule, call bioness & they can get one to you. it doesn’t sound like you have a very good support system from where you got the bioness. call bioness & tell them. you need a good support system to get the whole sha-bang working to benefit the most. this blog is a good start but you need more support in your immediate area.

let us know how things are going!

marion???? are you still out there? haven’t heard from you in a while……

October 7, 2009 at 7:06 pm
(376) Marion says:

Hi, Sandy. I’ve been having my own problems with my gait and the Bioness. It either turns my foot on the side when my foot is pointed straight ahead or it pronates out to the side. It just isn’t right. I’m back at my physical therapist’s trying to figure it out. Looks bleak, though.

October 7, 2009 at 8:28 pm
(377) Anna says:

Hi Ladies,
I had an appointment today with the Bioness representive, they changed my electrodes around.
I HOPE,HOPE that it will work.
I’ll keep you posted.

Does anyone have any suggestions for fatigue?

October 7, 2009 at 10:25 pm
(378) Sandy says:

marion-
i am having issues also. the month on prednisone was GREAT! i was walking very well, walking around the neighborhood again, not parking in the handicapped spaces and feeling wonderful. i wasn’t tired, kept up on the housework & had dinners ready.

things have changed. i stopped the steroids 1 1/2 weeks ago. i am not walking well-not bending my knee again. i am back to parking in the handicapped spots & i am not venturing out around the neighborhood. i went back to PT before i had the attack because i wasn’t walking very well. i am still there.

i don’t know…do you think it only works for a little while? we were both doing so well in the spring. we were both walking all over the place & the bioness wasn’t missing a beat. what happened? PT is telling me my hip is weak & i am having trouble clearing my foot because my hip isn’t strong enough to pull my leg up…i don’t know…

October 8, 2009 at 5:56 pm
(379) Sandy says:

marion-
i am so sorry you are having all these problems! i wish there was something i could do…
has PT had any answers yet?

October 9, 2009 at 9:32 am
(380) Anna says:

Good Morning,
I keeep meaning to ask if any of you heard the news about a possible treatment called GIFT 15? If yes, do you believe? I want to believe, but I’m scared, been let down many times.
One more thing, does anyone recommend VitaminB12?

October 9, 2009 at 2:58 pm
(381) Snew.andy says:

this is whst i found on the internet…

new.

“GIFT15 can take your normal, run-of-the-mill B-cells and convert them — in a Superman or Jekyll -Hyde sort of way — into these super-powerful B-regulatory cells,” Galipeau explained. “We can do that in a petri dish. We took normal B-cells from mice, and sprinkled GIFT15 on them, which led to this Jekyll and Hyde effect.

“And when we gave them back intravenously to mice ill with multiple sclerosis, the disease went away.”

MS must be caught in its earliest stages, Galipeau cautioned, and clinical studies are needed to test the treatment’s efficacy and safety in humans. No significant side-effects showed up in the mice, he said, and the treatment was fully effective with a single dose.

ms must be caught in the earliest stages…i was diagnosed 19 yrs ago…probably wouldn’t work for me. :(

October 11, 2009 at 4:54 pm
(382) Marion says:

Sandy, my PT is also trying to solve through exercises, though I am extremely doubtful it will work. Don’t know why the Bioness stopped being effective for both of us. As a matter of fact, the pain in my legs was actually not as bad BEFORE I got the unit. Strange…

October 13, 2009 at 3:42 pm
(383) Susan says:

Sandy & Marian,
Do you think the reason you are having more problems is that your MS is progressing and has nothing to do with the Bioness? I have a walk-aide but can only wear it for a limited time. I have only so much walking ability and when it’s used up, it’s used up wheather I have it on or not. Also, it seems like the root of the problem is the hip flexor and the Bioness and Walk-Aide does not stimulate that particuliar muscel.

October 13, 2009 at 6:27 pm
(384) Jonna says:

Hi Sandy & Marian,
I am with Susan on her comment. We do have MS and we will still have set backs from time to time. You may need to go back to step one or there abouts with the L300 and work through things with your PT. I wish you both the best with everything and remember to stay positive.

October 14, 2009 at 9:29 am
(385) Cath says:

re: the hip flexor and fatigue issues – the last two comments are dead on. my clinician recommended i work with a trainer at the Y (or it could be a PT, or anyone certified) to get what strength i could back in the hip muscles. it has been amazing so far. the bioness kind of unlocked the muscles – but they were so weak, they needed strengthening. again, it needs to be monitored but a recumbent semi elliptical bike (biodex, for ex.) is great for me at least. then we work on toning and strengthening the core. it is HARD and to echo all: we still have MS so for ex., i can’t sweat too much or else it is all over. but the fact i can do the bike at all is a major accomplishment – before the bioness, i doubt i could have even gotten on it :)

October 14, 2009 at 9:55 pm
(386) Cheryl says:

Hi Jonna,
I am a marathon runner with foot drop. I wear a carbon composite ankle foot orthotic when I run. I saw your wonderful Today Show video on the Bioness website and am excited to hear that you run with the L300. I tested the L300 last week and I was able to run up and down the hallway, but it wasn’t enough to assess if the device can withstand a 26.2 mile run. In your experience, is the L300 responsive to running and what do you know about the longevity of the device when worn by an active person. The warranty is only 1 year and I’m worried that I may literally and figuratively run it to the ground after a year! Any input you can provide will be much appreciated.
Thank you,
Cheryl

October 15, 2009 at 12:18 am
(387) Cath says:

re: the warranty – the office manager at the clinician’s office i go with has an awesome tip: if you can swing it, put the cost on AmEx, which doubles the warranty for you. i have had the device for three months and already have had the Bioness warranty work well for me – LOTS of parts are delicate, and they have been great about replacing them under warranty. but it is also nice to know that after the year, b/c i put it on AmEx – i get another year of the warranty. still waiting for insurance appeals but that’s another can of worms. thought i should pass that great tip along, tho!

October 16, 2009 at 12:21 am
(388) Maggie says:

Hello, I am going to try walk aide on the 22nd after reading about it on the internet. Your posts have been very helpful and now I am wondering if I should try Bioness instead. Anyone with positive experiences with walk aide?

October 16, 2009 at 12:42 pm
(389) Marion says:

Maggie, we did have someone on this blog who loved the Walkaide but I’m not sure she’s monitoring anymore. If I were you I would try both, as some of us did, if possible. This could be a big step (pun intended) in your life and you want to do what’s best for yourself.

October 16, 2009 at 3:01 pm
(390) Cheryl says:

Are there any runners out there wearing the L300? My AFO works well enough, but I’m really interested in the L300. I tested out it out and a Bioness representative was there and he was positive about being able to run. However, I want to hear from another MS patient who has first hand experience. Thank you.

October 16, 2009 at 3:24 pm
(391) Jonna says:

Hi Cheryl,
The L300 does help with up to 5 mph and it may be a little faster I am not certain on that. I do know that it can be worn all day. I have worn mine for 8 plus hours. After 4 hours or so it is good to take it off and give you skin and leg a break. You will have to work up to being able to wear all day. I have spoke with other long time L300 uses and none of us have had any problem with it wearing out. I would think that you would be able to call Customer Support
(800)211-9136 ex2 to ask about the warranty.

October 16, 2009 at 7:41 pm
(392) Sandy says:

maggie-
i tried both the walkaide and the bioness. i felt the bioness was far superior. the walkaide delivers the stimulation depending on the angle of your shin bone. the bioness delivers the stim when your heel leaves the ground. walkaide=1 cuff. bioness=3 pieces (cuff-heel sensor-remote control). walkaide doesn’t require shoes. bioness does for the heel sensor. the gal that liked the walkaide (that marion spoke of) lived by the beach. she wanted to walk on the beach so the walkaide worked perfect for her. i felt the bioness was more adjustable because you can increase/decrease the stim w/ the remote depending on how you are doing that day.

try them both-see which you prefer. good luck!

October 17, 2009 at 10:58 am
(393) Maggie says:

Thanks, do you have to wear special shoes with the Bioness?

October 17, 2009 at 4:44 pm
(394) Bev. says:

I still monitor this blog but I have not had to much to say since it is a bioness site and I do not have one. I have the walkaide and it helps me when I wear it to walk a little faster and not circumvent my foot. I called to try the bioness and had to leave a message and I have not tried again and did not get any response-I shall try again. I had guests for 2 weeks so I have not been on the computer until now. I recently saw my neurologist and he did give me a prescription for the walkaide but I paid for it and waiting to see if I am reimbursed from my insurance. I am going to have the botox bladder injection on Nov. 2nd-the first letter I received from my insurance -refused but then I got another letter from the insurance with approval. My neurologist put in the appeal for me.
Keep it up my fellow friends with MS (as we continue to live with this disorder) your discussions-they are so helpful. Best wishes to all of you. Bev.

October 17, 2009 at 4:47 pm
(395) Sandy says:

no. it works best if it has a back on the heel. i don’t think flip-flops would work. walking shoes work great for me. i think marion has worn heels w/ it…marion?

October 18, 2009 at 9:21 am
(396) Maggie says:

Sandy, can you tell me the link to GIFT15? I will be seeing my MS specialist soon and would like to show him the info. THanks.

October 18, 2009 at 10:22 am
(397) Sandy says:

maggie-
i just googled “gift 15″ and it was on the first page–not the first one listed but it was like the 3rd or 4th thing listed.

October 18, 2009 at 3:16 pm
(398) Susan says:

I like the walk aide better. There are less parts, I can wear sandals, and nothing shows if pants are worn. Also, I had a difficult time getting my heel down right to turn off stim on Bioness. Also, at work when I would be in the middle of a conversation, it would beep (after a certain amount of time lapsed without activation). This was sometimes embarrassing.

October 18, 2009 at 9:25 pm
(399) Bev. says:

Hi everyonei, Has anyone found the gift 15? What exactlly has to be typed I brought up all kinds of gifts and for MS medications it is not mentioned. I will call my neurologist tomorrow as now I have something new going on hot, slight pin prick feelings all over at night (wakes me up) I can’t sleep- up at 3 :15 I keep getting RLS- mirpex is not working as good as it did. After I had the cysto I ws told that I have a spastic bladder much the same as RLS. Whoopee I am not feeling very happy right now but I know that it could be worse-I keep tellimg myself that. it feels good to vent as you know what I am feeling and I can’t tell anyone else as those without this affliction do not understand or want to hear it.

October 18, 2009 at 9:46 pm
(400) Bev. says:

Found the site gift15 Tried typing with no spaces and it came up. I will ask my neuroloogist about it and offer to be one of those people to try any new thing out there for help with the ms.

October 19, 2009 at 6:14 pm
(401) Marion says:

Maggie, I’ve worn dress shoes with the Bioness (need to spacers they supply) but not heels (my heels-wearing days are through). I usually wear sneakers or topsiders with it. I wear the topsiders with barefeet ( sensor goes under the insert). You can wear it with any shoes that have an insert – not even a removable insert…I’ve pulled a glued insert up halfway and put the sensor under it.

October 19, 2009 at 6:26 pm
(402) Marion says:

So here’s a surprise, I started the insurance process on April 1. Bioness and I both checked with Cigna and they said they would pay 70% of the Bioness. Bioness billed me for the rest and I promptly paid it. I’ve been wearing my unit ever since. I just got a bill from Bioness for $2000 because apparently Cigna said the “usual and prevailing” rate for a Bioness L300 was less than Bioness is charging and Cigna won’t pay the difference. I’m trying to figure out 1)how it’s possible that someone else offers the Bioness L300, let alone at a reduced rate and 2) where the heck I’m going to find $2000.

October 19, 2009 at 7:03 pm
(403) Bev. says:

To everyone, I called the MS clinic today and was told about the gift15 tthey were unaware and had not heard of it and do not believe what hyou read on the internet and to get my information from the MS society. I offered to be on a study group for a cure It is probably to late for me but would be good for any with this disorder to get a cure. I was lucky that it took so long to diagnose and at that time told it was a mild case and slow progressng I only had an attack every 20 years . Take care.

October 20, 2009 at 9:38 pm
(404) Diane says:

Hi…I’m back….I have been monitoring the comments and I had to go to my neurologist today in Phila. and asked about GIF 15….he said it was experimental on mice only….I asked if we could pretend I was a mouse…he didn’t appreciate my humor. He wants to start me on Copaxone. Since I have PMMS, I don’t see the reason….I do not get “episodes”, I am gradually getting weaker on the left leg but I admit when my “significant other” passed away very unexpectedly in June, I was under a lot of stress plus did not do my exercises to the full extent. I now realize the importance of these excercises and have moved my life forward by going back to thinking about my life. My Walkaide is working well but I am going tomorrow after 6 months to have it maybe tweaked. I feel my stride could be better. Could be that my walking is better and I need a longer stride walking pattern.

October 21, 2009 at 4:16 pm
(405) Marion says:

Diane, welcome back! We’ve missed your Walkaide advice/expertise. I’m so sorry for your loss. I truly am. I’ve found that folks with MS often are stronger inside than those without it (who are stronger outside). I hope you can draw on that strength and bounce back. As far as your Copaxone comment, I also thought it was only for RRMS. (If you DO try an ABC drug, why wouldn’t start with the weekly injection rather than the daily??) Maybe get a second opinion?

October 22, 2009 at 9:19 am
(406) Diane says:

Hi Marion, yes, I think when you have a disease such as MS you have to be stronger than most because we have to mentally and physically force ourselves to “get over it” and do everything we can to improve our daily way of life. When I look back to 2004 when I first noticed my “clomping” of my left foot when I walked to what I have to deal with today, it is scary because I often think, where will I be in 5 more years and my support person is gone. It is thru our positive thinking and support groups as this that we can stay on track. I thank everyone for all their comments because you realize you are not alone in this and whatever advice we can give is helpful to someone out there. Apparently all the other drugs can affect your thyroid and since I already have Graves Disease which is in remission, the MS hospital chose Copaxone because it is the only one that doesn’t have the potential of attacking the thyroid. I have made my own decision that I will wait 6 months until my next MRI and then will try on a trial basis. Apparently, this drug is given daily so I am in no rush and maybe by then something else may be approved. In the meantime, exercise everyday, B-12 shot once a week, Vit. D 2x a month, baclofen 3 times a day and walkaide and prayers. I have to say being able to walk on the beach with your toes going thru the warm sand in the summer and walking barefoot in the house are so rewarding with the Walkaide. I carry a AA battery in my purse in case I ever hear a beep. It is good for a month and I have gone 6 weeks before I heard a beep. I am 6 months on the Walkaide, tweeked yesterday to give my left leg a little less computer control and more I need to think about so my stride can be bigger. Will try this a couple of weeks and decide if I want to tweek a little between where I was and where I am now.

October 22, 2009 at 11:59 am
(407) Sandy says:

…gosh-it almost feels like “the good ol’ days”… it has been a while since the 3 of us have chatted on this blog!

diane-
i was so sorry to hear of your loss! life just doesn’t seem fair sometimes! your attitude has always been so positive & i sometimes wish i could be as positive as you. your attitude will benefit you & help you deal w/ all the challenges life sends your way. do they feel the copaxone will now benefit PPMS? if so…why would you wait 6 months to start? if they think it will benefit you perhaps you should start sooner. is it the daily shot that makes you leary of starting the copaxone?

i’m glad you are back!

October 22, 2009 at 5:59 pm
(408) Diane says:

Hi Sandy….it is great to be back…I shutdown for a few months but now I’m moving forward. The Copaxone is a short in the dark because they real feel it is PPMS since I do not seem to have had episodes — and maybe I have in the past — but I just get weaker without any reason — sneaks up on you. I think he feels it is worth a try but I don’t think any medicine is worth taking if it is not going to take. Medicines are not necessarily good for you all the time and I don’t want to take anything on a whim especially since I do not have a support person in the home any more and my daughter is in MS while I am in NJ. Oh, here is some good news…my granddaugher was born two weeks before David died so it was bitter sweet and I am going to go see her next week for the second time. The one thing MS does is makes you do things now…do not put off what you can do today because tomorrow you may not be able to move. Airport security is always a treat with one of these devices. Last time I gave a demo to 4 of the screeners. You have to laugh.

October 22, 2009 at 11:53 pm
(409) Bev. says:

Hi Marion, I am having the bladder botox injection Nov. 2 I am so ready to have this as no meds work anymore .

So nice to read this blog and feel like I know all of you because of it. I hope everyon understood when I wrote about the gift15 that what I seaid was what was said to me not my conclusion guess they need to cover themselves as to new developments until those developments are official. Becaus of other things going on with me I am going to go on baclofen that I will be taking 3 times a day. I hope this will be all I need. I had the baclofen like when I first was diagnosed and I don’t remember it doing much for me then. Hope I notice a difference this time. I feel weaker at times but also had a few really good days like I have no MS. My offer to a study group -none at this time if over 64 years of age-so I do not qualify.

October 23, 2009 at 12:19 am
(410) Bev. says:

hi Diane,

Your feeling may subside with the stress. When I was first diagnosed to have MS the neurologist I then saw said something to the effect that the flare up was stress related to what I was dealing with at that time (another story) and I had a remission from the MS after the episode but the flare up left me with the foot drop and a weaker left leg. I then questioned the MS diagnosis that Mayo Clinic in Rochester, MN confirmedthat it was the disorder I have. I so wish it would go aw ay but reversal is not likely. Just hope to not get worse for another 20 years. My first episode was 1982 the diagnosis and second episode was 2002.

October 23, 2009 at 9:10 am
(411) Sandy says:

bev-
about the baclofen…i take it 3 times a day (many of us do) and i often wondered if it really did anything. i started because the neurologist felt i was having spasms in my leg when i walked. i had surgery last year & couldn’t take it until about 5pm on the day of surgery-my surgery was in the morning-my leg was having spasms constanty by that time! i no longer ‘wonder’ if it works!

October 23, 2009 at 12:56 pm
(412) Bev. says:

Hi Sandy, I sure hope that the baclofen works for me like you as I have been taking mirapex for restless leg syndrome and maybe it is spastic leg that I have because of the MS -it is in the same leg as the foot drop and it started happening at night even though I was taking a regiment of mirapex and miraapex was working before I thought. When I was evaluated for the walkaide my leg started jumping and the technician asked me how long had I had the spastic leg. It would be great if the baclofen worked for that spastecity. How long did it take for your initial baclofen to take effect?

October 23, 2009 at 5:00 pm
(413) Marion says:

Diane, for what it’s worth, Sandy and I are still here for you.

Bev, I’m thrilled about your upcoming procedure. Please remember that cathing may be necessary. I still have to from time to time and my procedure was 2 months ago. It’s still better than the alternative!

October 24, 2009 at 4:19 pm
(414) Bev. says:

Hi Marion, I am so looking forward to the botox bladder injection as last night I was up 6 times to void. I have never cathed and was told that I would at first not feel the urge to void and not empty out when I did.

Hi all,
yesterday was my first day on the bacofen and this morning I awoke without a backache, night time sweats , and no night ime tingling in my arms and Legs. I also do not need the walkaide so far today no footdrop or RLS whether it is the bacolfen treatment or another explanation I do not know-but monitoring the day and see how it goes..

October 24, 2009 at 4:35 pm
(415) Sandy says:

bev-
the baclofen should work pretty quick. it is not something you need to wait for numerous days to get the full effect. how much are you on? i take 20mg in the AM-15mg mid-day-20mg in the PM. it does make me REALLY tired. be careful if you need to drive! if you take it on an empty stomach it really kicks in quick. i have to be really careful-so BE CAREFUL!!

October 24, 2009 at 6:28 pm
(416) Bev. says:

Sandy ijust read your resoonse to my question about how long for the baclofen to work. thanks for your reply. if that is what i am experiencing keeps up it is wonderful to feel this way. i am taking 10 mg of baclofen 1 morn ,1 noon and 1 evening.

October 24, 2009 at 9:58 pm
(417) Diane says:

Bev, Are you saying that after taking your Baclofen you have no stiffness? I want to take the full 10 mg in the a.m. but since I am on the road so much driving I am afraid to’ At night after I have had my full dose and do my exercising, my walking is the best without any aid. My little dog runs along side of me barking because I think she thinks I am crazy because I am walking real fast in the house. Actually I am just happy because I am so normal feeling before bedtime. If only I felt like that all day.

October 24, 2009 at 10:19 pm
(418) Bev. says:

Diane, I am lucky I do not have to drive I used to but my husband has been doing all the driving I take the baclofen 10 MG 3 x DAY AND THE DIFFERENCE IS AMAZING . I do not think of having to be alone and we never know if that happens what that will do to my dependence on him. Yes right now the experience of no walk aid , no stiffness and no foot drop is wonderful. I have not experienced this much back to the way I ws before the MS diagnosis it may be a remission but every episode left me with whatever new symptom I had and this is the first time for me that this old feeling has lasted this long and also the first tine I have taken this medication I took it for a short time back in 2002 and did not notice the difference and also was in a denial that I had the MS at that time. I had stated that in a previous comment.

October 25, 2009 at 10:06 am
(419) Bev says:

foundation as I keep membership up and in it is an article about taking a break from the mirapex that was not helping anymore and then resume the medication. there is another website for http://www.rls.org this may interest you. Bev.

October 25, 2009 at 2:19 pm
(420) Sandy says:

wow! i feel like i am on A LOT of baclofen! i have NEVER felt that it ‘solved’ all my probs. i have been on it about 10 years though-i was still nursing when i started taking it (homecare).

about the bioness: i haven’t been able to wear it for 2 weeks! i am still having skin probs even w/ the cotton electrodes. they NEVER dry out totally because they have a plastic back. i wonder how many bacteria are thriving in them by the time the 2 week wearing time is up. my skin doesn’t like them! my bioness & i have a “love/hate” relationship-right now i hate it.

October 26, 2009 at 1:51 am
(421) Bev says:

Hi Marion, My last comment I wanted to have you read but I see half of it is gone amd so I will try to add to the last comment that I made-I said something to the affect that I have a membrship in the RLS foundation and I get a news magazine that a lot of members have sent in their experiences and other articles of RLS and I found the article by a person that tald of the mirapex not working after time for him so he every now and then goes a night without the medicine and then back on it and it works again. Maybe that is what I am experiencing because I had the RLS again last night and this morning. I will keep taking my baclofen and now I find that I am not feeling like the first day on it but I am now suffering a lot of stress with worry as my husband had emergency surgery this evening for a ruptured colon and when he had that done the Doctor found a tumor that he removed and some lymph nodes around it and the tumor looked like cancer anyway the next few ays will be crucial for him and he has a bag temporarily and after 6 month recovery time ill have more surgery to remove the bag and close him up. In the meantime I need to cange my botox bladder injection to a later time as he may be coming home on Nov. 2 so I will not be on this blog for awhile until things get back to normal around here.

October 26, 2009 at 7:04 pm
(422) Diane says:

Bev, I am so sorry to hear about your husband. Life sure isn’t fair. Isn’t living with MS enough yet we get hit with family illness and more stress. We’re here if you need to talk. My legs used to make all kinds of jerky movement like something crawling around and if I traveled and walked alot, I was up a lot during the night with cramping. Since taking the baclofen that has stopped. I have been on it for 18 mons. and they have now increased it because my left leg has got tight. I was concerned about starting baclofen because I read that you have to go off slowly and you could have hallucinations.

October 28, 2009 at 10:56 pm
(423) Cath says:

Sandy – interesting re: the cotton electrodes. Mine are good. I don’t love them but the thought of going back to the others are, well, since you and I had the skin reactions – you know how frightful that could be.

Mine HAVe been drying out fairly recently. Must be b/c we have the heat on and it’s dryer. Interesting, tho, it goes from “wet enough” to bone dry quickly and then I get NO stim and I curse myself. I know we are supposed to moisten every 4 hours; I don’t but I can’t let it go bone dry.

I do notice over night as it charges, they get bone try, plastic backing or no. I wonder if we could wash them (tee hee) – to rid of the bacteria.

November 1, 2009 at 8:28 am
(424) Bev says:

I am in the process of weaning off of the mirapex and see if just taking baclofen works, It did for one day but with all the stress of husband’s surgery and what he has to go through it may not work like it did that one day. I am feeling a pity party for myself right now. Thank you for all the well wishes.

Bev.

November 1, 2009 at 3:19 pm
(425) Sandy says:

cath-
do you take the cotton electrodes off the cuff each eve? i am trying something ‘new’, each day when i am done wearing the bioness, i take it off & use a hairdryer to throughly dry the cotton electrodes (i take them off the cuff first). that seems to bve helping w/ the skin irritation. crazy huh?

November 2, 2009 at 5:48 pm
(426) Marion says:

Bev, so far the Mirapex works really well for me (I can drive during day taking a very small dose). I understand the probability is high that it will stop at some point. Thanks for letting me know about the baclofen. Sandy, I’m about to try the cotton electrodes but what you’re going through doesn’t sound too good to me!!

November 4, 2009 at 8:25 am
(427) Sandy says:

marion-
don’t be discoraged about the cotton electrodes. today my bioness rep told me I was the ONLY one who was having probs w/ the cotton! they should work great for you! good luck!

November 7, 2009 at 12:51 pm
(428) Bev says:

H i everyone,Marion-I am now taking the mirapex less doses and I still have occaasional RLS but not as long lasting as usual also no caffiene, any beverage with alchol and no salt added ( less salt to cook with)
Diane-thank you for sharing with me that the stress and living with MS is not easy-now I know it is normal to feel that way-I have been overwhelmed and My family has been a great help to us but I do not think they really understand that the MS is affected and I sense the deterioation happening they think it is something I can control. Wish it were so.
the walkaide does help but having it on makes my lower leg swell so I must take it off for a bit – it is hard to find time to be without the aid. I am not driving as I have experienced the double vision looking straight ahead but all the time looking to the left and when I close one eye-everyone thinks I am winking at them. I do smile a lot so understandable.
Bev.

November 10, 2009 at 9:15 am
(429) Diane says:

Bev, stay strong and we are always here for you to sound off. Family is great in support but they don’t have the MS inside of their body to fully understand what we go thru everyday. I can actually feel it activate at times. Stress is a huge factor and unfortunately, life has stress. I am starting to feel better going back on my exercise program and had my Walkaide tweaked. I am leaving on a business trip to San Diego today and it will involve a lot of walking for the next week so I am very very apprehensive but some how I know I will push myself thru it and and then I’ll come home and collapse and regroup all over again.

November 11, 2009 at 1:38 pm
(430) Frank says:

I ran across the Bioness L300 on line about eight months ago.
I called them about trying it. They had no place near me where I could go at that time.
A few weeks later they called to say that they now had it available near me.
I went there and was given four one-hour trials.

The PT said it wouldn’t work for me. She said I needed a brace then sent me to an orthotics supplier who agreed to make the brace which I got and tried to use. It was terrible.

After a few weeks the orthotics people called to tell me they had something new they wanted me to try. I went and it turned out to be the Bioness again. This time they had someone from the factory there who took about ten minutes to fit it to me and it worked fine.
So, I rented it for four months to really try it. It was great
I told them to apply to my insurance company (Humana) who paid for it without question.
I have yet to have a fall since I got it. I doubt that I would be walking today if not for the Humana.

November 14, 2009 at 9:16 pm
(431) Anne says:

Congratulations Frank, I’m glad there is an insurance co. that is open minded and can see the tremendous value the L300 has for those of us with MS. I appealed Anthemn and lost but by then I had rented the Bioness for a month and hated the thought of going back to a cane and dragging my right foot around! I am using the Care Credit plan Bioness recommended with 0% financing for 18 months. I hope by the time I might need to replace it my insurance company will be on board.

November 19, 2009 at 6:36 pm
(432) Marion says:

Great for you Frank!!

November 21, 2009 at 3:45 pm
(433) Amy says:

I have not posted in quite sometime. I did try the Bioness 2 weeks on right and 2 weeks on left. I just couldn’t grow to like it. It was painful and the remote control part just was aggravating to me. I knew if I did purchase it it wouldn’t be used as often as it should. Well, yesterday I tried the walkaid. I liked it much better than the bioness. My problem is it throws my balance off so bad. I have balance issues already but this really effects it. I just don’t know what I should do. Will my balance improve after I get used to it? Not sure. I really wish this guy (different from the Bioness rep.) would let me bring it home to try it out. I don’t like having someone watch me as I walk up and down a hallway. It is a big decision and don’t want to feel rushed. How much did all of you pay for it? Also, is it hard to pull over jeans? Is it really noticable underneath pants? How do you shut it off when driving? So many questions and not enough time when you are with the reps. I would really like your input on how this all works.

November 23, 2009 at 3:54 pm
(434) Susan says:

Hi Amy,
I just read your comments. I have the walk-aide. My insurance covered it 100%. Hanger charged over $7000 which I didn’t think was right. If insurance wouldn’t have paid they were only going to charge me $4500. I hardly ever use it. I can only wear it for about an hour and then the stim tires me so much I have to turn it off. I tried building up, but it never got to the point where I could stand wearing it for hours at a time. It sometimes throws my balance off too. The only time I wear it now is if my leg is weaker than normal. I will wear it for awhile and then my leg will seem to be stronger for several days. Maybe it’s my imagination – sometimes hard to tell. I would be very hesitant to purchase the Walk-aide and then end up not using it like me.

November 27, 2009 at 7:33 pm
(435) Venus Mirian says:

Hey everybody, it is Thanksgiving Day! I’m happy with my extra day off, and I am planning to make something fun that’ll probably involve a bike ride and seeing something new in Country Club Hills I haven’t seen yet.
You write something new at Thanksgiving?

November 28, 2009 at 9:32 pm
(436) Bev says:

Hi everyone,

Has anyone seen the Video of a ttreatment of a new breakthrough by Dr. Paolo Zamboni about iron causing the ms by pooling in the brain because blood vessels are too narrow ? the video was interesting and maybe this could be an answer for us-would it not be wonderful to end this disorder for good.

I have not been on this blog for sometime as I am nursing my husband and now we will be very busy with his Chemo treatments 3 times a week every other week. I have not been driving as I have had some eye incidents that make me uncomfortable as to being safe on the road. I have double vision looking left and when I am tired even looking straight ahead. Also have exoerienced not being able to see at all (briefly) that only happened once Cause???? I can see (no double) when I close one eye. A lot of people drive with only one eye and if I am not tired one eye will do fine. Stress has been a huge factor right now with my MS cusing me problems of balance and even my walk aide is not as good as it used to be in my walking. I shall call my neurologist and see if increasing the baclofen will help.

November 30, 2009 at 10:20 am
(437) Bev. says:

Hi Diane, How was the business Trip? Walk aide? Hope you all had a nice Thanksgiving. My husband has improved and is now doing so good-great this takes a lot off the responsibility I had. All is good. Amy I have not had the balance being worse with the walk aide-on the contrary I did better and was able to look ahead and could get around pretty good on rough ground-I did find I had to walk straight and I understand how those of you that have the bioness can step sideways also. I like to be barefoot and would have to wear shoes with the heel electrode- it is my left foot that has the foot dropsy and I have a bunion on my right which I am reluctant to get removed as that is my stronger foot and it will be laid up for sometime -what to do- I still have to use the mirapex for the RLS If I could take the baclofen and have the experience I had for one day then I would give up the mirapex but the RLS can be so bad that I won’t be witout my mirapex. Does anyone else experiment with the meds on their own?

December 3, 2009 at 11:37 am
(438) Serenity2 says:

I am so happy I stumbled onto this website. I purchase a Walkaide about 3 years ago, for footdrop. It never really lifted by foot, just turned it outward – sometimes. The good thing about it thouh, was somehow it promoted circulation, because my foot around the ankle was turning very dark, and there was swelling. This was corrected – but not the footdrop. We paid $4,500. out of pocket. I am now considering the BIONESS, and reading the comments have been very helpful.
THANK YOU!!!

December 4, 2009 at 5:18 am
(439) Bev. says:

Hi Serenity 2 Welcome to this site. I have the walkaide and I have a hard time finding the place so as not to turn my foot outward but it does help with the footdrop most of the time-when I am tired it does not.I still want to try the bioness and see if it works better for me as it does stimulate even walking sideways . I paid for my walkaide and put in a claim for some help from my insurance hoping to be reimbursed for some of the expense . Let us know how you are doing and this is a good place to ask questions and also for support with problems we face.

December 5, 2009 at 9:10 pm
(440) Bev says:

I wish you all a Very Merry Christmas and a Bright New Year– A quote from a Christmas Card I got Las year this wonderful sentiment
Stars shine brighter; cares grow lighter; and Hope soar higher; At Christmas; friends are dearer; life’s meaning clearer; and heaven seems nearer; At Christmas.

December 6, 2009 at 7:37 pm
(441) Diane says:

Hello everyone, I have had a hectic week after my business trip and tomorrow I leave on my last business trip of the year. I seem to mentally prepare myself and push thru…I only wear flats now…but I do have a formal event so I will wear dress flats and put my low dress heels on when I am there. Bev, I think about you often and hope that the treatments are going to work for your husband. Yes, stress does affect our MS and especially vision. These are all the first holidays I am going thru without David, so I do have some setbacks with the walking at times but the walkaide was tweaked, I am back to exercising and I feel better. I go to the beach and walk with my dog a couple of times a week if the weather is nice. The key for me is to sit down periodically. If I stand for too long, I can’t bend my leg. Amy, when you first get the Walkaide you may seem off balance because you leg is working more like it should. I use a balance board, stretch bands, large ball all for balance. Walking backwards on the treadmill is a good one too. Do not exercise with the walkaide on. You want to build yourself up naturally. Have a great holiday season everyone and make the most of every day you have because your life can change in an instant.

December 11, 2009 at 1:39 pm
(442) Bev. says:

Hi Diane, I had the botox injection Last Mon. good to finally get it-so far so good. My follow up is on the 23rd and I can get it on my way to my son’s home that we are going to be at for 3 nights for the Christmas celebration. I did not feel a thing as I was put to sleep and the anesthetic made me nauseated but it did pass-no pain and I only took tylenol pain reliever twice-4 hours apart. My husband starts his treatments on the 14th-3days on every other week- we have been going to appointments pretty steady-yesterday thursday he had a part of his ear cut out because he had a mole melanoma that had to be removed. his incision is looking about healed and we are so glad to be over with that-he had a port as it is called put in on Wed. pre op on tuesday a stomach cst scan this a.m. -friday- Wow we have a couple days off now and do not have to get up and go So I have had a hectic week and this social life is not fun. After the chemo treatments-I need a tooth pulled on thurs and he needs blood work done-thursday- for a appointment for his follow up (colon surgery) on friday so that will take care of the 5 days for next week. You sound like you have adjusted to your way of life-work is good to keep your mind occupied will be thinking of you during the holidays-only time will make it easier for you. Take care of yourself and keep a positive attitude-easier said than done -I know. for us this geting older is the pits. where are the golden years??? So the ms is not my priority issue right now nor the foot dop-if I walk sowly I do not have a problem with my walkaide working.

December 14, 2009 at 2:39 pm
(443) Mark W says:

Hard to believe it has been almost a year since my last posting here. What can In say allot of changes in my life. I have undergone two treatments for (CCSVI) and now sporting 4 stents in my jugulars. Feeling pretty darn good. Time will tell how this all plays out. Google (CCSVI) and check it out! There are some BIG changes coming our way… I still am interested in either the Bioness or Walkaid but they are still not in the budget as I now have some rather large medical bills to pay post surgery. My question is there anyone who is familiar with the Swede-O – Step-Smart Drop Foot Device? My foot drop is worse than ever and feel it is time for some good old PT and hard work to gain back some mobility. Peace and Health, Mark

December 16, 2009 at 9:28 am
(444) Bev. says:

Hi Mark, I am most interested in the ccsvi I will check it out as soon as I get done with this comment. Will it help with the foot drop and you won’t need the device to help with that anyway? It is great but one cannot kneal with it on so it can limit some time wearing. But the bioness is supposed to work for a time after and Jonna said on her TV interview that she didn’t need it every day. I try to be without my walkaide and find that it helps tremendously to wear it whenever I can. Good luck and keep us posted about the ccsvi

December 16, 2009 at 2:50 pm
(445) Serenity2 says:

I was so excited about the Bioness – called company and was told I needed a referral for a consult. That’s understandable. However, when i brought brochurers to my Neurologist, and was told I would have to wait up to 3 days for his referral (because he has other patients), I was a little upset. Even more upsetting was he wouldn’t give me a referral after I waited 3 days. Said my primary doctor should do this. I am really concerned about whether my primary doctor will not approve referral for a consult. I don’t understand why there is any issue here at all. Has anyone experienced a problem with getting a referral for a consult for Bioness?

December 16, 2009 at 7:58 pm
(446) Mark W says:

Thanks Bev, I went out on a limb and ordered the Swed-o and hope to be sporting it around for Christmas. I will take your advice and use it for my short walks with sitting spots along the route so as not to have to kneel down. Sometimes I have to plop my butt down to rest wherever and kneeling is apart of standing back up. I hope eventually the drop foot goes away. Time for PT and exercise for overall fitness first. Hoping for the best. Cheers, Mark

December 27, 2009 at 9:40 am
(447) Mary says:

Can anyone tell me if it helps restore sensory nerve loss in your feet and lower legs. Thank you.

December 29, 2009 at 11:57 am
(448) John says:

My wife had a brain tumor, not MS, which left her with impaired mobility and tone problems in her legs. She uses Bioness L300 devices and has found them helpful. We are trying to get Blue Cross to reimburse us – but they have begun denying our claims and we are now appealing. Does anyone have experience with Blue Cross and the Ness L300 that could offer us guidance on the most effective strategy? Has BCBS of California (this is where Bioness is located, so they are handling it, though we are on the East Coast) ever covered this device – for MS or other problems?

December 30, 2009 at 7:36 am
(449) Diane says:

John, I was denied for both the Bioness L300 (which I rented for 3 months) and for the Walkaide (which I purchased myself). It was appealed and still was denied. Letters from my neurologist and from the MS Institute did not matter. They claim there is not enough trials to warrant the use. Why don’t they just look at people themselves…if we can’t walk and then all of a sudden you strap something on and the person is able to be mobile, they are not faking it. Insurance companies are not thinking logically….if I trip and fall, they will have to pay for my hospital stay for possible broken bones, rehab, etc., however, they will not pay even 20% to stop that from possibly happening. For their fine service, I get to pay Horizon Blue $775 a month for just me.

January 4, 2010 at 4:03 pm
(450) Bev says:

John I am so sorry to hear about your insurance costing so much I have Mutual of Omaha and medicare so we do not have that much to deal with and we must also get a drug plan andthey all are pretty much the same for coverage I don’t know what to tell you about insurance but the nurses i know say to get off any private types like HMO’s these are friends telling me this and I guess they know. I did buy my own walkaide and it is an expensive device I still want to try the bioness. The walkaide does limit what I can wear as the device has a part that has to go on the outside of it but it helps with the walking so it is worth it. In the long run the insurance companys would save themselves a lot of other medical expenses by approving the devices it- will happen – everything takes a lot of time and the need is now for most of us. we can hope the New year will have some answers for MS people. Keep brave my friends.

January 10, 2010 at 4:58 pm
(451) Diane says:

Bev, I see that you mentioned you have the device that attaches to the shoe. Have you tried it without? I love the Walkaide over the Bioness because I can walk barefoot or not worry about the type of shoe I wear (although I am resigned to just flats now). Walkaide also came out with a new cuff but I personally do not like it as it looks too much like the Bioness (it is getting wider and clamps shut). I just ordered a “second” of the old one (although it just came out last Spring) which is narrow but contours to the leg shape and I use the large electrodes, not the small round ones. I could not get those to work well but the large ones for sensitive skin are wonderful.

January 11, 2010 at 10:12 am
(452) Serenity2 says:

Help!! I finally found something that seems to work – BUT theres a problem. I had my consult for Bioness last week. The technician found a definite response. My foot lifted wonderfully, but also in every direction. Problem is, she could not locate the “sweet spot” she called it, where my foot lifts upward to mark the location. I could see her frustration after about 30 minutes of trying. Has anyone had this problem? I go back to see her again this week. I would like to know of other’s success.
Serenity2

January 11, 2010 at 9:36 pm
(453) Diane says:

I think we have all gone thru that. Sometimes it happens on the second or third try and sometimes it takes another therapist to find the spot. You are getting a response so be positive that all it takes is tweaking to get it right. I had the same with the Bioness and when I tried the Walkaide the first two times were horrible but the third time was a charm and I’ve been using it since last April.

January 12, 2010 at 8:11 am
(454) Serenity2 says:

Thank you so much for the response Diane. I really needed that information. Have a blessed day.

January 17, 2010 at 2:02 am
(455) Amy says:

Hello all. I have had the walkaid for about 3 weeks now and can’t get it to work. I have tried everything to get it lined up but have had no luck. The ortho is just letting me use it, but I haven’t been able too. Makes me mad since I am using it for free. He lives 3 hours a way so I can’t just run there to have it tweaked on. Any ideas how to get it to line up? Thanks. Amy

January 17, 2010 at 8:48 am
(456) Diane says:

Amy, Are you using the 2 inch sensitive skin electrodes? The original small round ones are almost impossible to get on the right spot. When I was assessed the third time it worked and they put a sharpie dot on my leg in both areas which I replenished every few days. When I got my own cuff they marked the inside so I knew where to put the electrodes. If you do not go back to be reassessed you will not be happy. Also, remember the electrodes need to be dampened before putting the cuff on and electrodes should be changed about every two weeks.

January 21, 2010 at 9:43 pm
(457) Irene says:

I was diagnosed with MS six months ago at age 66. There has been lots to get used to. I started PT and the therapist suggested the Bioness L300 this week. I was startled because another therapist had told me that I would need to get have more mobility issues before I would qualify for an assisted device. My first thought was to reject the idea, but I have watched the Today Show video and been reading everything I could find. I would love to hear from others in my age range who have tried the Bioness device. I am active and have been working out or walking everyday for 25 years. I hate my present mobility problems and would give anything to walk a mile. I feel like I can make adjustments, but I wonder how hard it is.

January 23, 2010 at 8:42 am
(458) daiane says:

Irene, I was diagnosed at 57 with PPMS…we are over the normal age for getting it, but, I believe we had it a lot of earlier; the symptoms just went unnoticed. It took me 3 years of tests, other diagnosis, etc. before I got worse and the LP confirmed. Regarding “you have to get worse” to qualify, they may have been referring to insurance coverage. Unfortunately, in 90% of the people I have talked to, it is almost impossible to have the Bioness or Walkaide covered…insurance cop-out “not enough testing”. I rented the Bioness for 3 months and purchased the Walkaide. I like having only one item to worry about and I can walk barefoot. Also the constant beeping of the Bioness on and off when I was at meetings in work was very disruptive and annoying. I have drop foot with the MS (luckily my left foot so driving is not affected). It definitely improves walking. While I can’t walk 5-10 miles a day which I used to….a mile I can do…on good days. Some days my leg is just too tired and it keeps wanting to turn in after the toes pick up. PT is sooooooo important. Stretching…resistance bands…bending the knees…turning the ankle in a window wiper style….so many things. Any device will not work by itself….we have to work everyday at helping ourself with PT…not matter how small each day. Either device requires a prescription….Walkaide you can try without one but need a scrip to purchase. Bioness has mandatory PT requirements and in my case Aetna would not cover and those can get pretty expensive. Walkaide was half the total cost of a Bioness (with the PT built in). Go to MS support groups. I went to one last week and the guest speaker was a PT with MS herself. What a find…someone who really understands the mystery of MS and what we need to stay as mobile as we can.

January 23, 2010 at 4:45 pm
(459) Irene says:

Daiane Thanks for your comments. I knew about the lack of insurance for Bioness and WalkAid, but was blown away by the price. I spent lots of money in travel expenses going to Mayo Clinic to finally get a diagnosis, so this just adds to the joy of having MS. Luckily my insurance covers PT. I can look back about 15 years and see signs of MS but was able to keep moving and no doctor picked up on the symptoms. This seems to be a common thread. I was glad to hear of your positive experience with a support group. I have heard that many of the groups are pity parties. While I know that MS is not easy to deal with, I want to hear how people are positively dealing with MS so that I can pick up pointers that will help me continue to be positive. And pointers that will help me keep the people around me positive. I hope to start with the Bioness experience on Ground Hog Day. Last week, my four year old grandson asked me to hold his hand so he could help me walk. When I see him at Easter, I hope he won’t find it necessary to help me and we can take a walk in the woods and look for “aminals.”

January 25, 2010 at 10:27 am
(460) Irene says:

Although everyone is different, I am wondering what kind of time line I can expect with Bioness. Will I have to wear it at therapy for several sessions before I get to take it home for a trial? Does it take lots of adjusting? Balance is a major problem for me. Will wearing the Bioness make it better? My right hip is out of whack. I want to think that is because of the strange gait I have developed with MS. Might that get better? I wake up at night thinking of questions I should have asked the PT but won’t get to talk with her until my next appointment. There appears to be no way of directly communicating with the PT between appointments. Maybe that will get better with time. I guess I just want everything to happen yesterday–the story of my life.

January 26, 2010 at 12:34 am
(461) Bev says:

I haven’t been on this site for awhile and just got to read and catch up. I have the walkaide and when I wrote about not kneeling it is because of the control that velcro’s to the strap is in the way. I have the strap that one wears just below the knee and has the 2 electrodes-it seems that the sweet spot moves so at times I have to keep trying to get it in the exact place I also have a brace that was a molded piece that keeps the foot up so toes do not drop but wearing the brace all the time can make the ankle weak (brace was a prescription from Mayo clinic-Rochester, MN) My problem now is I have developed hyper extension when I walk and I hope I need only a exercise for this as I don’t know how one could wear the walk aid if a brace is needed. I was diagnosed with the MS when I was 64 but looking back when I had (age 43)had happeniings that I knew something was wrong and cat scans and MRI’s -no diagnosis- All other episodes have been suttle until the foot drop. My balance has been off when fatigued. I feel each day is another one to face and keep on fighting this disease. this blog is my support group.

January 27, 2010 at 9:53 am
(462) Diane says:

Hi Bev, Happy 2010! Are you using the large electrodes made for sensitive skin because they really are great and cover a lot more area so the “sweet” spot is usually always covered even with a little motion. I was having my Walkaide rechecked last week and asked about sometimes I have to readjust during the day from a 2 to a 3 and then back down. Was told (which makes sense) the skin temp has a lot to do with it along with a little movement such as getting in and out of the car, trying to kneel, etc. I go back to Thomas Jefferson Monday for my 3 month eval. If I look back to a year ago, I know my PPMS is moving forward because I can’t walk as well and I am apprehensive when I do walk. I am sure a lot is in the mind as I no longer have David by my side to catch me if I start to trip. I can go back to at least the age of 50 to little things that I am sure were beginning signs of MS. Took many doctors and misdiagnosis before finally two years ago at 57 finding out what I thought all along. I just wasn’t expecting the worst form of MS. However, we have it, can’t turn the clock around, so, we have to make the most of each day and do as much as we can…some days alot more than others. I am thankful I really didn’t start having real mobility issues until around 55 because I have met some wonderful people in their 30′s who already are at my level. I am thankful I had that time to run around with my kids and be successful in my profession to provide for them. I also just got the brace just to use once in a while when I know I have some serious stuff that has to get done and I need more stability in the ankle. I know it can weaken more since you are not using the foot by itself so I know this will be used rarely — just when I want some moral support. If you find the right support group, it is great. The one I go to has about 16 people and they are all positive — swimming, working, finding solutions even if they are using electric chairs, walkers and canes. Not one of them is sitting home feeling sorry for themselves.

January 31, 2010 at 12:51 am
(463) Bev. says:

Hi Diane and everyone who has this MS. I am grateful to have not been with a severe case of this disorder and can still walk- the hyper extension is giving me problems but the walkaide has been great I do not know which electrodes I have but no problem with skin disorders and I seem to be able to now find the sweet spot quite easily but I have to move pretty slow and this has been hard as I was a hard charger moved fast and the technician had to speed up the impulse on the walkaide as he said I walk to fast for it to work properly but no problem with it now. I keep hoping for the remission to set in. oh well – life is good and my husband is doing well I have had to help him and that is good for me I can now do more for myself I was a very capable person before-I was a hasirdresser, teachers aid and distributor to grocery stores and did some in store demos. I was very active and walked 4 to 6 miles a day when not working. This MS came as quite a surprise. I had a brother who had MD and was in a wheelchair for about 35 years and always was happy and loved life; what an inspiration he was-he passed away at age 67 and life expectancy for him was 40 years old- he had Beckers MD no relation to MS I am told I was able to help- him and My folks but seem to have fallen apart since they are gone-the good Lord kept me strong enough -thankfully-to get through those times. I wish a happy 2010 to all too.

February 1, 2010 at 7:44 pm
(464) Irene Goetze says:

I came to this website to get more information on Bioness. I am learning more about why people went to Walk Aid. I respect the decision to use one device over another. We all make decisions in life based on our personal circumstances. My PT feels that Bioness would be best and I have yet to try it. I expect that I will tomorrow. I have no idea what to expect. As an individual who tried to control all aspects of her life (not always successfully), I would like to have more information as I enter this phase. Finding that I had MS was a surprise and I am grateful that I have the time to exercise with a trainer and go to physical therapy and to to a gym where I swim. I am trying to conquer MS rather than simply live with it. as are most individuals on this site. I know of people who take to their beds when they get the MS diagnosis. Like the people who are part of this website, I am not ready to lay down without a fight, I would like to be able to deal with the foot drop without a “device.” That may not be possible–probably not. So what can I expect as I embark on the Bioness journey. Is it easy ot hard to get used to? I am a gadget person so the three parts do not bother me. I just want to know the time involved in getting used to Bioness and positive effect, especially for the over 60 crowd. Thank you

February 2, 2010 at 12:53 am
(465) Amy says:

I just received a google alert about the walkaid and was wondering if any of you have heard about it. The walkaid has a new cuff called Bi-flex Cuff. It sounds like it will work much better and finding the right spot is very simple with this. I see my walkaid guy on the 11th and do plan on talking to him. Let me know if any of you know anything on this.

February 2, 2010 at 10:14 am
(466) Sandy says:

irene-
if you really want to learn about the bioness, go back to the first posting of this blog & start reading. we all talk about getting the bioness, & our trials & tribulations w/ learning about using it. it will be a learning experience as you start reading…

this blog started about 1 year ago. i still use my bioness daily. i have hip issues now so foot drop is not the only thing i am dealing w/. there are pros & cons w/ both the bioness & the walkaide. i would not give up my bioness & i will not use the walkaide as the bioness worked best for me.

just get comfortable & start reading…

February 2, 2010 at 8:19 pm
(467) Diane says:

Amy, yes, I was at the ortho person two weeks ago and saw it. For me, I didn’t like it, it reminded me of the Bioness cuff. It is very professional looking but is bigger. I was told that it would be half price for anyone who already had the Walkaide so that would be about $300. I am more comfortable with the cuff they came out with last year which has a form of the leg versus the original round cuff. I purchased another of the cuff I like to have a spare. The larger electrodes (inch square) fit in very nicely and it hooks very nice but I didn’t like the size or the confinement to my leg. There are some days I can’t wait to un-velcro and ripe the thing off of my leg. Of the 3 people who looked at the cuff in the first week, 2 bought that one and I stayed with what I liked. Again, everyone is an individual and has different likes and wants. By the way, any comments when you are out and about?? I have been asked if I was on house arrest, if it is an Ipod and if it was to measure my heart while walking. I always say yes to whatever….let them think…I just chuckle and keep walking.

February 2, 2010 at 10:35 pm
(468) Irene says:

I was able to try the Bioness today. Was timed with and without doing 10 meters and 50 meters. Speed and balance improved with Bioness, as did gait. I have been reading old posts and it has been helpful. It is interesting to read about the individual preferences. I asked my PT if I would be able to run like Jonna, She asked how long it had been since I ran. It has been longer than I can remember. Walking without foot drop and with reduced fatigue would be worth the price of any device. I am going to have to work on strengthening adductor and adductor muscles as well as glutes. I want to walk in the woods and shop without dropping (flat on my face.)
I will be working with the PT on getting used to the Bioness while I wait for my order to be processed. And exercising and swimming. MS is work!

February 6, 2010 at 6:54 am
(469) Irene says:

I was just offered an opportunity to buy a refurbished Bioness at a considerable discount with the same one year warranty. Is there anyone out there that has tried this and what has been the experience.

February 6, 2010 at 3:14 pm
(470) Bev, says:

I did not get from reading this site that most people afflicted with the MS disease do not put up a fight to state so a person may have a very mild case of MS. My brother had MD and he always tried all the things that other children did like to ride a bike -was not able to do it-swim but was unable to do so and in his last years could not pick up a glass cup etc no matter how light weight it was- until we walk in anothers shoes we can not be judgemental of others- and maybe some give up but I think in most cases a person fights this affliction-I hate this disease and everyday is a challenge-I have a relatively mild case and before my diasnosis I did some volunteer work at a nursing home where a young lady was a resident and her case of MS at that ime was severe-she could not talk and she cried pretty much of the time she appeared to be in her thirties I even rejected the diagnosis and I went to Mayo clinic in Rochester, MN where it was confirmed-I had my first cat scan 20 years before and 10 years again a MRI, Lumber puncture that all came back negative and no MS although that was the suspicion of Drs. I saw. I had double vision and it was the foot drop and another MRI that cme back positive for MS. My foot drop has improved and I am slower and tire easily. I go with out my walkaide but use it when I go out. I do not have a PT and there is no support group where I live-My husband is now having Chemo and he has enough on his plate without getting me to where I need to go-we have only one car and because of my vision I am not driving not only for my safety but for others too. I might state that I also have rheumatoid Arthritis and I don’t know if the pains in my legs that I experience are the MS or RA. Oh well life is good and we do what we can.

February 7, 2010 at 10:10 am
(471) Bev. says:

Hi Irene, Go for it –sounds good and you still get a waranty so how can you go wrong. . Bev.

February 7, 2010 at 6:43 pm
(472) Jonna says:

It has been forever since I have been on here.

Irene, good luck with everything. Yes, MS is hard work. It sound like you are going in a good direction.

When I do need and/or want to jog/run, I can do it but only for a short distance. Being able to make it a tenth of a mile fells soooo good.

February 8, 2010 at 5:54 pm
(473) Irene says:

Thank you Bev and Jonna for your comments and well wishes. While my family and friends think that the Bioness ia great idea, they see it in the abstract because they do not live with MS. It has been helpful read comments on this site and learn how others are dealing with the reality of MS. This is a positive support group.

February 19, 2010 at 2:54 pm
(474) Serenity2 says:

Ive gotten so much help from this website. Want to share my experiences also. I’ve had Walkaide for over a year now, and it never worked. About 90% of the time, I could not find the spot. But did provide stimulation which was good. I learned about the larger pads from this websie. and just got a sample (large pads) from my pt. For the first time, my walkaide works!! Also, got an update on the product, it can now be programed so that it fires up at every step.

I am also interested in Bioness, and have started the pt for it. I called the Bioness Company to get accurate information about cost, etc. I was told that Tricare-Healthnet might pay for a percentage. Also there is a new Zero interest payment plan you can apply for. I think monthly minimum is $300./month. Also, one advantage of Bioness is that it is more directional (sideways, backwards) than Walkaide – which only works for forward walking.

Someone mentioned lack of energy associated with MS. I learned about Provigil from a Clinical Health website, and it has been a lifesaver for me. It is reputable. You would think that my Neurologist would have told me about it. Anyway, I take 200 mgs daily, and without it , I just don’t know what I would do.

I wish someone had told me long ago about the importance of exercise. I think its the hip flexor and leg flexors which cause the leg to lift. Mine are very weak, and I can’t lift my left leg. But I am now trying my best to strengthen what is still there. Gravity is not my friend, so I have to do exercises while laying down, but if anyone knows something that works, please share. I hate it, and even become incensed when someone pt, or md, says “you will never be able to …” As long as there is a God, He has the last word about everything as far as I am concerned.

I keep hearing pt’s talk about the solar plexus, (core muscles) and how important it is for balance (please forgive spelling) Heard horseback riding really helped people with ms. There is a machine Called The Five Axis Mechanical Core Muscle Trainer (saw in a magazine for $2,000 ouch!!!) It simulates horsebackriding. Is anyone familiar with this?

Thank you all so much for sharing your journey.

February 22, 2010 at 10:38 pm
(475) Irene says:

I have just started with my very own (rented) Ness L 300. It is not quite as easy to get used to as I thought it would be. I have developed all kinds of bad walking behaviors that have to be unlearned before I will every be able to walk well. Even so, I am happy with my Ness. I have had to work on hip flexors and glutes. I do that work in a pool. I was given some exercises by my PT and have been increasing reps. I also use ankle weights to help strengthen the muscles. I walk heel-toe back and forth in the pool. I also do jumping jacks in the pool to strength my inner and outer thighs. I love to swim laps, but spend more time exercising these days. It ain’t easy. Luckily I have a supportive PT and a supportive family. My four year old grandson wants to take my hand so that he can help me walk. Thank goodness for four year olds.

February 23, 2010 at 10:28 am
(476) Serenity2 says:

Thank you Irene for the information you shared. I will speak with my Bioness pt about water therapy for those hip flexor muscles. It sounds like it could work for me also.
A friend e-mailed me yesterday about a new drug Ampyra (fampridine-SR) was FDA approved for all forms of MS on January 22. It is a time released pill, that improves walking. It is the first oral MS drug and the first specifically approved to control an MS symptom (walking)
I heard about it over a year ago from the MS center in Cleveland. The Neurolgist told me it would help my walking, but it was not FDA approved then, was in compound form, very expensive and not covered by insurance. The MS website explains how it works on the neurons and myelin sheaths. Anyway, I can’t wait to try it.

February 24, 2010 at 10:01 am
(477) Irene says:

Hi Serenity I’m glad you are going to talk to your PT about water therapy. I have cut back my swimming to do the water exercises. I use ankle water weights to increase the intensity of my exercises. I love being in the water. I feel graceful and mobile and all kinds of good things. I would love to live in Atlantis and be able to move without looking like I am drunk 24/7. I have developed lots of bad habits compensating for the leg and foot problems caused by MS. My PT has me learning to walk all over again. I worked out some Ness difficulties with her yesterday, so I am anxious to start using the Ness more and more. I am going to have to live in warm-ups or find pants that are wider below the knee. When I went to Mayo Clinic to find out what was causing my mobility and balance problems, I was hoping to be able to take a single pill or a single shot once and have all of my problems disappear. Now I am just thankful that the doctors didn’t find something worse. I have a new challenge. I will do everything I can to prevail. With a smile.

February 25, 2010 at 8:38 am
(478) Sandy says:

irene-
as for pants to wear w/ the biioness…it is easier w/ sweats however i decided i was not going to stop wearing my favorite jeans just because i have the bioness. i have to pull them down to my shins to get the bioness off/on but i feel better when i am not in sweats ALL THE TIME. i am about 15 yrs behind in fashion cause i like the “relaxed fit-tapered leg” jeans & they work great when the jeans are on. there is plenty of room for the bioness. my husband & kids are not even bothered by me all of a sudden just taking my jeans partly off to get the bioness off or on. don’t give up on your favorite pants-make them work for you w/ the bioness.

February 26, 2010 at 5:41 pm
(479) Diane says:

Wearing pants is a challenge…leaving the tapered leg jeans on the shelf was discouraging…in fact, I should just get rid of all of them because I will not be using them. I found a great jean by Tommy Hilfiger…”Boyfriend” style and it works great with the Walkaide and I also had the Bioness when I purchased them. I bought 3 more pairs because I wanted to be sure I had something that worked. Suits for work are not a problem. I was at the MS hospital in Phila. and asked about the fampridine and was told I have to get worse before they would give it to me. That seems strange to me because our disease can’t be reversed once it moves forward.

I really have to admit that PT is so important. Having PPMS and not doing exercises every day has taken a toll on my walking. It is depressing at times to think that PT is a daily part of your life for the rest of your life. There are some days when I really want to stop but I know I can’t. The cold weather also affects my left leg. When I tense up from the cold my leg gets stiff and I have a real real hard time walking. Having 4 huge snow storms certainly has made this a horrible winter. Hello Spring and Summer.

February 27, 2010 at 10:16 am
(480) Irene says:

Thanks for the info on pants. I have some knit jeans from Coldwater Creek and I may have to bite the bullet and but more. I love the way they feel. I recently bought some inexpensive capris but we are not having our usual weather in Georgia. It is way too cold for capris. I am glad I have to exercise daily. I have been in an exercise routine for years and I know it helps my sense of humor as well as my physical well-being. Swimming is great for my back and for MS. I saw a pain specialist last week and he put me on a drug that is used for fibromyalgia that should help with some of the MS symptoms and give me more energy. Hopefully my insurance will pay for it. I have stenosis in my neck which eventually may create a need for surgery. The pain doctor said that some of the symptoms which have been attributed to MS may be because of the narrowing of my spinal column in the neck area. Can’t exercise away spinal stenosis–darn. I am off to the gym. Lets hope March will be a better weather month.

March 7, 2010 at 9:15 am
(481) George says:

Does anybody know if Medi-care covers it. I know Anthem BC/BS doesn’t. This is a very awesome tool. I tried it awhile ago and the difference was amazing. I just wish I purchased it back then. I just could not afford it back then. I saw the same Today Show segment as most did. A very inspirasional product that gives hope to a more normal life.

March 10, 2010 at 12:08 pm
(482) Irene says:

I am Medicare and it is not covered. Bioness did offer me the opportunity to buy a refurbished unit for $5500. It has the same warranty. And, of course, like most expensive medical products there is a no interest credit plan. 25 days ago, I rented my unit for a month. I was hoping I would adapt to using it more quickly. I can tell that it helps. And it is getting better. But it takes time. I am also fighting hip and glute problems created by the gait created by my MS problems. So exercise is a must for me. I was not diagnosed until way after I started having mobility problems. Good luck!

March 16, 2010 at 8:51 pm
(483) LeRoy says:

I had a stroke in 1995 after a surgery which affected my right side. I have had an AFO since that time and have tried the Bioness at the PT Clinic. Please let me know if there is anyone out there with that long of a time lapse before using it. Thanks

March 23, 2010 at 8:00 am
(484) Irene says:

LeRoy I think much of the activity on this site has diminished as the Ness L300 has been in use for a while. I have no information to answer your questions. I would hope your physical therapist could help you. I tried out the Ness at physical therapy before renting it for a month. The Ness stimulates muscles to help prevent foot drop. It also has an exercise function which helps with ankle mobility. All of this activity bypasses the brain which has been shoirt circuited by MS and strokes. Bioness has a Peer User program which gives people an opportunity to communicate with individuals who use their products. There are individuals who have had strokes that you could communicate with. The sessions are on Thursdays. The website for more information is http://www.bioness.com/NESS_L300_for_Foot_Drop/Peer_User_Program_for_NESS_L300.php I hope that this helps.

March 29, 2010 at 4:13 pm
(485) Irene says:

Let’s hear it for cotton electrodes. Even though I was not having a serious skin problem (I was not happy with the way my skin looked), I was able to get the cotton electrodes and am absolutely thrilled with the feel and the care factor. I asked Bioness if the cotton electrodes could automatically come with the Ness L300. Something about FDA made it impossible. It has been 5 weeks and I am beginning to walk like I did before I had foot drop. I am relearning to walk properly. I may need to get lessons from my 18 month twin grandchildren.

March 29, 2010 at 10:09 pm
(486) Sandy says:

irene-
bioness says use a new set of cotton electrodes every 2 weeks. i have been using the cotton electrodes for a very long time as i had severe allergic reactions to the original electrodes.

this is what i’ve learned:
…you do NOT need a new set every 2 weeks if you properly care for them.
…wash them w/ soap & water every couple days.
…make sure they completely dry out each night. a hair-dryer takes forever so the most effective method is to blot them on a towel & get a thin washcloth to lay over the edge of the heat (a/c) vent. lay the electrodes-cotton side down-on top of the washcloth. hopefully your vents are on the floor. the air will do a perfect job drying them during the night. if they don’t dry out completely they start to smell funny.
…after a few months they get thinner & you don’t seem to get the response you want. then it is time to get a new set. i think i used my last set 4 months!

i hope my advice helps…

March 30, 2010 at 4:57 pm
(487) Irene says:

Thank you Sandy
I have been washing them regularly and sponging down the inside of the Ness. My house does not have floor vents, so I like your idea of blotting the electrodes.
I have another question–Now that I have the foot drop taken care of with the Ness, I am noticing that my thigh is causing walking problems. Even though I am strong, my leg does not know how to walk right. Is this something that you experienced? It seems like walking is the only solution for this problem. Did you find this to be the case?

March 31, 2010 at 9:42 am
(488) Sandy says:

irene-
maybe you could tape the electrodes to the wall vent so they get dry.

i have been using the bioness for over a year. i have hip problems that make walking difficult even w/ the bioness. i can’t bring my thigh up very well w/ each step. PT tells me that is because of hip weakness. i walked a LOT better a year ago

April 1, 2010 at 5:10 pm
(489) maruski says:

Hi! This is so awesome you guys! nice to meet you all

I got a bioness in Nov ’09 and have been coping with it since then. I tried walk aide, but the foot lift was poor with that device for me, the ness created a nice smooth foot lift so that was the device I bought. I wish I had been able to do the walkaide–the bioness is less friendly in these ways: 1 recharge every night. Forgot to plug in? too bad. Walkaide just uses a battery once in a while. The other thing is shoes. I don’t like to wear shoes in the house, but am forced to with bioness or not use it. It is a lot of fuss to get all set up with all 3 pieces of the ness. OTOH, I really like the fact that in the kitchen I can stand at the counter and walk sideways doing stuff. ness keeps up with that walkaide does NOT at all. If you don’t bend the knee well the walkaide will let you down sometimes just walking along too-it won’t fire all of a sudden. ANyway ness is what I got and it works as much as it can. But here’s my issue…

I walk with a cane and have done for 5 years, and in the last year started using a foot lifter type device. My leg is stiff with poor bending at the knee. Without ness I swing my leg wide in an arc to try not to hit the ground with it..

I have a love/hate relationship with my ness. I have to remove and replace it several times every day to finally get it in the good spot.

But here’s thing that bugs me no one else has mentioned: when I do not have the ness I can bend my knee maybe 10%, but my drop foot is totally limp so it trips me.

When the ness is on and working, the foot gets picked up but I can’t bend my knee hardly at all, it is like it turns my leg spastic. It ends up being half a dozen of one and 6 of the other. I walk badly in both situations, though somewhat better with the ness and the knee stiff.

Has anyone else had this issue and resolved it? My doctor recommended I try a baclofen at bedtime and see if that left me more flexible, I started that a week ago so far not change.

Thank you to anyone with any understanding on this.
maruski

April 1, 2010 at 10:06 pm
(490) Irene says:

Hello Maruski I read your comments with interest. I have had my Ness for about 6 weeks. Things are going well. I plug it in at night just as a plug in my cell phone and digital book. I left the y part of the cord in a hotel and while I was waiting for a replacement, I had to get up in the middle of the night to move the cord from the remote to the leg unit. No fun. My legs have all sorts of problem caused by my goofy MS gait–I was diagnosed late in the game. I work with a trainer and some with a PT. Both have me exercising my glutes, hip flexors and inner and outer thighs. This has helped with walking. I haven’t been able to let up from daily exercise and know when I have missed a couple of days. I do some exercises in a pool while wearing ankle weights. And I stretch and stretch and stretch. I am retired and have married for 45 years to an exercise nut. Both factors make it easier for me to keep on track.. I take quite a cocktail of medication for my legs including baclofen (2 in morning, 2 at night), gapapentine (3 in morning, 3 at night), Savella (1 in morning, 1 before 4:00 pm. Savella has made the biggest difference in my leg pain and mobility.
I know about adjusting the Ness–just did it. Pulling pants up and down is the biggest problem for me so I bought knit jeans. That helps a lot .
This site has been around for a couple of years and there was much more interest at its inception. I have gone back and read through earlier posts to gain insights. There are people who have “been around” for awhile that are helpful. For example, Sandy recently responded to one of my posts.
Good luck

April 5, 2010 at 10:39 am
(491) Sandy says:

maruski-
i have the stiff knee issue also. i walk better w/ the bioness but i don’t walk well either…it’s the pits!
i take baclofen 3x daily.
this site has been around just over 1 yr. we have all had love/hate relationships w/ our bioness. go to the beginning of the site…get comfortable…& just start reading. you will learn about all our troubles & triumphs.

April 21, 2010 at 7:08 pm
(492) maruski says:

Hey thanks guys!! I appreciate it! THis forum is really great Is there a forum somewhere for bioness users that is active or sponsored? I can’s seem to find one…

I see I am not alone, that is good. I like my ness–usually and I do walk better with it.

Here is one thing I did–I got a slipper from the Riteaid store that is a slip on but with a very short back behind the heel to keep it on (vs the regular slip on with nothing behind the heel). I can attach the ness foot piece to that and it reduces the shoe fuss when I am in the house so the ness is more accessible to me. I still prefer barefoot, but hey a slipper is OK and better than socks and shoes for me.

thank you for taking the time to answer me Irene and Sandy!!

April 26, 2010 at 9:05 pm
(493) Caro says:

Thanks so much for all of the comments that have been left here – I couldn’t sleep the other night and I found this site – I was so impressed with the possibility of getting help with my foot drop (MS diagnosed in 2004) that I called and spoke to a rep for this product that day. I noticed that quite a few people also have the problem of knee hyperextending – I have this but not always?? which is wierd. Anyways I thought I would let you all know that when I spoke to rep she mentioned that they are in the process of coming out with a thigh brace (I think that’s what its called) that willl help to address this problem by targeting the quads and the hamstring which is notoriously weak in pwMS. It works with or without the knee brace(bioness) to help activste all the muscles to do with knee (I guess when used ‘with’ the bioness would work best). They are currently going thru the FDA approval process in the US and it should then (hopefully) gain approval in other countries – I am writing from Australia – in terms of time she said they are hoping to get US FDA approval early 2011 and then other countries maybe a year or so after that. Good luck to all and thanks again for the insights.

April 27, 2010 at 2:48 pm
(494) Irene says:

I have a question for Sandy regarding the 4 month marathon of use reported for the cotton electrodes. I managed to get four weeks out of my last set. Then all kinds of lights went on when using the L300. The lights went out when I changed electrodes. So Sandy, is there any secret other than washing and drying the electrodes every few days. I am actually delighted with 4 weeks. That cuts my expense by half. Just wondering if I am missing anything. Actually the cotton electrodes are wonderful. My legs do not show quite the reaction that was shown with the standard electrode. The cotton electrodes are far more comfortable. I would recommend them for anyone. Now I wish I would walk a little better. I think I have to work a little harder.

April 29, 2010 at 9:01 am
(495) Sandy says:

irene-
where do you live? i think the warmer weather is harder on the electrodes cause you sweat & they are always warm. mine don’t always last 4 months…just that one time. all i do is wash them & dry them. nothing magical.
goodluck

April 29, 2010 at 8:04 pm
(496) Irene says:

Sandy
I live in Georgia. We have not had our usual warm spring, but now that it has warmed up the electrodes are getting riper sooner. I am trying to use two sets of electrodes on alternate days. That lets them dry out more thoroughly. Thanks again for your input

May 3, 2010 at 6:51 pm
(497) frecacarre says:

pattern sources security page efforts

May 14, 2010 at 7:45 pm
(498) Maggie says:

I’ve been here a couple times way back, tried the walk aide but it didn’t work for me and my insurance would not cover it. Now my walk is worst. I’ve done a lot of research on this, pls read and sign the petition for USA to allow treatment for MSers. Thank you! Click here: Support The Liberation Treatment/CCSVI Research in the United States Petition

June 2, 2010 at 12:15 pm
(499) Stacie says:

I purchased the L300 in January 2010 and love it! I was able to rent it for six weeks before I had to give it back. Insurance did not cover it, but it has been well worth the money. I have found it hard to find dress shoes with removable insoles for work. Now that summer is here it is even more difficult to find shoes, but I was able to find a brand, Merrell, that had cute closed toe summer shoes. However, no matter what type of shoe I wear the heel sensor is causing the skin on my heel to come off. Is anyone else having a problem with the heel sensor and their skin?

June 28, 2010 at 7:10 pm
(500) christianelac says:

Bonjour

I have been using the Bioness for 3 weeks now and have not seen a difference in my gait or strength of my legs.
Have any of you experienced this?

Also, when I read the instruction book, it seems quite complicated to keep the unit with all the changes of batteries on different part of the bioness. Any problem?

I am really not certain to keep it, but I intend to try it for the full 4 weeks.

Thank you

July 1, 2010 at 8:24 pm
(501) lawtonpaul says:

values pre respect

September 27, 2010 at 3:32 pm
(502) Karen says:

just finished reading all 501 blogs – sure is great to get REAL users insights – isn’t this site being used anymore?

October 18, 2010 at 10:34 am
(503) sandy says:

hi karen,
i check this site every month or 2. we all use to talk, sometimes several times a day. things change though. if you read all 501 posts, then you have learned about all our trials, tribulations & triumphs. do you use the bioness? i still use mine everyday. i don’t walk well, but i walk better w/ the bioness than without it.

i was getting on today to see if marion still checked the site. i am sure you recognize both our names from the beginning of the blog.

marion??? are you out there? how are you?

karen…i will check the site more frequently & perhaps we can ‘talk’
good luck!

October 18, 2010 at 7:36 pm
(504) Fibra says:

I am going to try the Boness tomorrow 11/19/10. I am very excited to find out if it works on me. Looking at Joanna’s segment on Todays Shows gave me a lot of hope. As long as I hold on to something, I will walk. I hold my husband’s hand when we walk and I only use the Walker when I am at work. Just an FYI – I am on Tysabri injection once a month, take Baclofen 10 MG 3x a day (muscle relaxer and Ampyra twice a day (states it should help with walking, but I have not seen or felt a difference for 3 months now.) The place I am going tomorrow stated that 99% of MS patients are very satisfies with Bioness. I will let all of you know how it goes.

October 19, 2010 at 2:53 pm
(505) Fibra says:

Hi, its me again (Fibra). I went for an evaluation for Bioness today 10/19/10. I had very high hopes. Even though it helped, the differance was very minimum. I am going to back next week to try the Walkaid to find out if it works on me. In either case I will rent it for a month the Bioness or Walkaid. The evaluator informed me that usually Walkaid can not be rented but he will make an exception. I will let all of you know next week on how it turns out.

October 20, 2010 at 3:35 pm
(506) Susan says:

I used the Bioness and my insurance paid for the Walk-Aid. It did not help my endurance or make me stronger. Also no matter how much I exercise it does not make me stronger. I do just as well without the divice. I try and think about lifting my foot and walking correctly. This is just as effective.

December 7, 2010 at 8:36 am
(507) Bev. says:

I just received an email from a friend that says British researchers said they may have found a way to reverse damage to the central nervous system caused by MS.

it is 5years away for clinical trials and treatment within 15 years.
researcher Professor Robin Franklin director of the MS society Cambridge Centre for Myelin Repair at the University of Cambridge for a read . Good luck to all.
I got the new cuff for the walk aid and it is wonderful- easier to find the right spot for the foot drop. but I seem to be having other problems and Now I have been diagnosed with secondary P/R MS
Merry Christmas and be brave.

December 14, 2010 at 11:31 pm
(508) Maggie says:

HI, I was here about a year ago. My insurance would not cover this so I left. I began reading about CCSVI. Have any of you been tested and treated for it?

January 25, 2011 at 7:26 pm
(509) Lisa says:

All the blogs have been very insightful in educating myself on both the Ness & Walkaide. I chose to leave a comment in the hopes that my future experiences may help someone else. I don’t have MS but do have drop foot due to Partial Paralysis from an auto accident 36 years ago.
I was evaluated for the Ness and I’m a candidate. Have another test run tomorrow. To me the Walkaide sounds more appealing largly to the fact that no shoes are required and want to give it a try also.

January 26, 2011 at 12:13 pm
(510) jill says:

I recently purchased a refurbished Ness l300 after working with it on and off for a month with my orthotics person and the regional rep for Bioness. I am not totally in love with the unit,but it has prevented me from tripping over my right foot. the issues that I am having mostly have to do with the leads. I tried the sticky leads during my month of trial and had trouble with them stay ing on my leg when I removed the unit, so when I bought the ness I requested the cloth leads. I was not told that they have to be rewet every 2-3 hours or they will not work. I know when they stop working because I have this continuous vibration in the nerve and the foot will not raise. I find that very frustrating. I will go back to the old leads. The other issue that I have and it is a design problem is that for those of us that have MS and balance issues every time my weight shifts the gait sensor signals for my toes to lift even if i am standing still. So if I do’t put in pause mode my toes are constantly moving. On the bright side I can now go shopping and walk for about 2 hours. My leg is tired, but I wouldn’t have been able to to that before. And my toes are stronger on the upward flexion of the toes according to my doctor. Purchasing this device is a very individual decision. As with MS some days using it are better than others

February 12, 2011 at 7:43 pm
(511) Lisa says:

Tri-care, my insurance co. has denied the request for a elec. stim. device. But after 3 visits with a local ortho clinic I was given the opportunity to take the bioness home for a week (free). The tech found the appropriate foot motion on the second try and I haven’t had any problems with postioning the cuff but I have found it is somewhat heavy. A lot of activity tends to move it down a tad which causes me to have a weaker stim. So I readjust occasionaly through out the day. My average stim is 16 = (5) which is fairly low on the scale and I haven’t had any soreness as of yet.
I tried the Walkaid last night. I like the small light weight cuff. The design seems better at keeping it from moving down. It is a one piece system, no shoes required and felt more natural when walking “slow”. I DID get stimed when I moved sideways and backward. I’ve been given the opportunity to try it (free) for a couple hours at the end of the month although it can be rented for $380. a week. Walkaid requires several visits before the system is fine tuned for the indiviual.
I’m trying to educating myself with both products before I make a decision. I have gone back over the previous blogs more than onece to understand what people have delt with in using both devices.

February 13, 2011 at 9:32 pm
(512) sandy says:

lisa,
you are very smart to educate yourself prior to making your decision. the bioness was the one for me & diane liked the walkaid. i am sure you recognize both our names. i still use the bioness everyday. i have the cotton electrodes & i find it easy to reposition the cuff if it gets moved during the day. rewetting the electrodes during the day is not a problem. you want to take it off every few hours anyways to give your skin a break. i wish you luck in your quest to find what works for you. if you have any questions feel free to ask & i will check back to see if i can help you.

diane-are you still out there? perhaps we can help lisa together & answer any questions she has.

February 18, 2011 at 3:18 pm
(513) Lisa says:

Sandy
Thanks sooo much for your insight. I’m sure I’ll have questions the further I progress on the devices. So far everything is going great with the Bioness. I have already started to feel very minimal muscle aches all the way up to my thigh. Which is really good beause that means they are getting excercised. Sorta hard to believe that just by lifting the toe can have effects on muscles all the way up your leg! I was given another free weeks trial with the Ness. Walked the mall and stubbed my foot once when normaly I would have stubbed it several times. After one week I’m already planting my foot flat instead of on my toe. It could take up to a year before I walk heel – toe since my tendons have shrunk over the last 35 years.
Wed. I pick up the Walkaide for a days free trial. The only way to have it for home use is by paying the rental fees, but I can check it out for the day supposedly as much as I’d like. So we shall see.
These devices are sooo awesome for those in need. I just wish the word was out there more that they exist.
P.S. We will be visiting your neck of the woods soon. Have family that lives near Alton, Il. Hoping for warm weather:)

February 23, 2011 at 8:51 am
(514) sandy says:

lisa,
have a safe trip & keep me updated on how things go w/ the walkaide.

February 28, 2011 at 9:42 pm
(515) John says:

How is everyone doing. While on vacation I came across the L300 and the Walkaide, with the use of the internet. I do have CP so will require 2 units. I was able to purchase one on ebay last week, and now see another one available. Both are Walkaides, Are people having problems with them?

I’m still on vacation and heading back to Canada in 3 weeks, and am hoping it could be programmed since I bought it on ebay.. I’ll hold on buying the second on, until I get back and try the one out.

Is there anyone here, using this equipment for extended period of time? Just curious if works at the beginning, but over time it loses its punch.. just curious..

March 1, 2011 at 12:17 pm
(516) sandy says:

john,
i have used the bioness for 2 full years now. i use it every day. i walked nearly ‘normal’ when i first got it & for about the first 9-10 months. now i have hip issues that make walking more difficult. i walk better w/ bioness & when i exercise frequently. i wish you good luck in your quest to find what will work for you.

March 1, 2011 at 9:28 pm
(517) John says:

Sandy,

two years? You mentioned that when you first began with the bioness, you walked nearly “normal”, is the hip related in any way to the drop foot? I myself have had back pain for over seven years now, my CP is mild. But have found that after reading ” Healing Back Pain” by Dr. John Sarno, my back pain has almost completely disappeared.

I emailed Walkaide questioning the setup for the one I purchased on Ebay, and was told that a clinical technician will do the fitting for me and set the price, so I will see how that goes prior to possibly buying another used one. I will be getting back home in the third week of March.

March 6, 2011 at 2:09 pm
(518) Lisa says:

John- Hope the Walkaide works our for you. Something is always better then nothing in terms of physical help.

I brought home the Walkaide for the whole day. “LOVE” the cuff compared to Bioness’. It’s way lighter in weight and easier to get on and off. The stim is reliable with a slow walk but at a faster pace it didn’t always stim at the appropriate time. The misfires are apparently from the way “I” walk, my knee tends to turn in at a faster pace and the unit doesn’t get the proper info to stim. The stim level was on the lowest she could go and it was still on the verge of uncomfortable, by the end of the day I almost couldn’t deal with it. It wasn’t burning me but that is what the sensation felt like. The tech is looking into different pads because the sticky gel on them makes a difference as to how the stim goes thru? Waiting for her to call back with new pads and give it another test run.
In the mean time I still have the Bioness for trial. The cuff has been adjusted lower on my leg. Because of the design, every time I sat down or bent my knee it got pushed down a tad. I’m now starting to feel muscle use in 2 areas of my foot. Every week it seems I notice a different muscle that is being worked. The stim is consistent, almost too consistent, because it goes off just by shifting your weight. But I think I feel more comfortable knowing that I have too much stim than not having a stim when I actually need it.
I really like the one piece concept with Walkaide and the cuff but I am leaning towards the Bioness for reliablity and a comfortable stimulation. Went to the Dr. 4 a ltr. of med. necessity to apeal insurance denial. Dr. informed me TriWest has never covered Walkaide/Bioness only the Tens unit. So I’m sure what ever I get will be an out of pocket expense.

March 11, 2011 at 12:34 pm
(519) John says:

Lisa,

I did get my second one now as well, I’m really looking forward to putting them on. I booked a doctors appointment for March 30th. My concern is the programming, since I am not buying them from the clinic that I’m expecting to do the programming. How often are they programmed? The clinic I have in mind, up in Canada, deals with the walkaide as well as the bioness. with the second one I purchased, the individual that I bought from, said she found something that worked better for her, was it the bioness? who knows.

I may be too optimistic, but why not..

March 12, 2011 at 8:50 pm
(520) Lisa says:

John,
Way to go on finding 2 walkaide units. I hope you managed to get a good deal. If your nerves are intact and your a candidate for a device then I’m sure you’ll be pleased with what you have. One may work better than the other depending on individual issues but they both DO work.
I have another apt. March 21 with the walkaide clinic, they are going to put a smaller stim pad on top and leave the larger pad on the bottom to see if that will give me a comfortable and effective stim? So we shall see? I will try and ask some questions about the programing and post whatever I find out in the hopes of educating ourselves and maybe answer your question?
In the mean time I had to turn the bioness back in. I got 3 weeks worth of free trial time. I didn’t use it that much the last couple days because the top of my foot muscle felt like it cramped everytime I got stimed. I’m assuming that I’m fatiguing that muscle and need to give it a rest? I’m not working with a pt yet but hope to get a referral after I get a unit.

March 16, 2011 at 8:39 am
(521) Diane says:

Hi everyone…happened to use a different computer this a.m. and this site was “set” to come up and I caught up on what’s going on. Lisa, your use of either Ness or Walkaide could be different that that of people with MS. While your drop foot is from a trauma, it should pretty well be done and if you can get one of the two units to work for you, you should have consistant results. It comes down to personal choice….I did not like the 3 parts of the Ness and the Walkaide worked beautifully for me and I can go barefoot in the house and on the beach. The first year was perfect, then as my MS progresses, the dropfoot gets worse and I had to get the walking adjusted in the computer but on a “bad MS” day, I still have trouble walking and now 2 years later, have to turn to an AFO if I am going to walk a distance such as shopping at the mall, or my daughter’s wedding coming up. I think insurance is still objecting and maybe now I can understand….it works….for a while for MS patients and it is a lot of money to spent for not a true permanent result. Again, for people who feel their dropfoot is at a stand still, I highly recommend either of the units. Some people cannot get used to the “stem”…for me, that is a normal part of life now. Remember, strapping these devices on isn’t enough…you need to exercise and stretch everyday. I was sick for two weeks this past winter and when I started to feel okay to go back to my normal day…I had to re-teach my leg all over. Atrophy sets in very quickly.

Walkaide has a new cuff which should set the pads in a better position so you don’t get that shifting. My one nerve is really deep and sometimes I kick my toe up, but my side foot doesn’t turn up….but rather down…so instead of stubbing my toe, I get caught on the side of my foot. Whatever your choice…something is better than doing nothing…and stay positive. Remember no matter what we get thrown at us, there is someone else who is worse off.

March 16, 2011 at 7:35 pm
(522) John says:

Lisa,

I just got the second one shipped yesterday, here in California, the other one was shipped home up in Canada, that one was from Ireland, this one from Wyoming. It won’t be too long now before I could try these out. Any info you get, would be greatly appreciated.

Diane, Sad to hear that the benefits are sometimes, short-lived. I myself have Cerebral Palsy, and didn’t know I had it until my mid twenties, I walked with a slightly abnormal gait. but didn’t look into it until then.. From there I was given an exercise regiment, plenty of stretches and thing did get better, but over the years, it wears you out, and so I slowly stopped, then my backpain arose, so I got myself a cane.. That was probably a mistake, because the cane was like a crutch, and now need it for balance. I have worked out plenty as of late and have started the stretching again, my balance is improving. I of course am hoping that the walkaide’s help out.. I didn’t find out about them until a few months ago, I may be jumping the gun, but I can only hope..

March 21, 2011 at 10:18 pm
(523) Lisa says:

John,
Had my walkaid apt. today. I personaly didn’t get anywhere since the tech could not get the computer to talk to the unit. Have to reschedule in April.

From what I learned the walkaide is more difficult for the techs to program than the bioness. But she did say there shouldn’t be any problem in a qualified tech programing your needs to the units you purchased on line. The program lasts for as long as the unit works. The only time the program will have to have future adjustments is to keep up with your progress or decline.
Once you get the units lined out for yourself I hope you will be pleased with the perfomance they can offer you. Good luck….

March 16, 2011 at 8:41 pm
(524) sandy says:

john,
balance is one of my biggest issues also. i can’t walk a straight line. i am on the list to get a ‘support dog’ this year sometime to help me stay balanced.

diane,
so glad to hear how you are. very sorry to hear you have to use an AFO now. i used one prior to the bioness. the bioness still works for me, although not as well since i now have these hip issues. this disease is a terrible thing.

March 16, 2011 at 9:02 pm
(525) John says:

Sandy,

Is it MS that you are dealing with? Has either the Bioness or Walkaide helped in any way? I’ve read in forums that spasticity was reduced, balance was improved and back pains were eliminated with the use of these devices..

In improving balance I stand on one foot and try to balance, then rotate feet do it for approximately 5 minutes combined, and 2 or 3 times a day.. Stretching the hamstring also helped..

I was also told to wear shoes all the time, running shoes, excellent arch support, Saucony, and asics is what they recommended.

March 17, 2011 at 12:53 am
(526) Patricia says:

I had been a satisfied Bioness user myself until the stimulator battery on the side of my cuff failed a few weeks ago. Haven’t been able to use my device since and I really rely on it for getting around; especially out in the community. Customer no-service told me that my one-year warranty was up and that the cost to replace that single battery was going to be $750.00. What kind of battery costs $750? I guess Bioness didn’t make enough money off of me when I paid them the $6,200 two years ago? Anybody else out there having problems with their Bioness batteries?

March 17, 2011 at 8:38 am
(527) Diane says:

Sandy,
I understand about the hip because that is part of my problem with the drop foot — it is all on the left side. I am restarting PT for gait, hip and balance. I do PT and machines 5x a week but after a while, probably not doing it as correctly and truthfully, some of the exercises such as repeatedly lifting the left leg from a sitting position and not using stomach muscles, and I tend to do too infrequently. The AFO I have is a newer style with hinges so my leg is not rigid, just gives me more stability and constant full lifting of the toes to be on my feet walking a full day. I only use it when I have to or if I am having a bad MS day.

I am a little surprised about used Walkaide units being sold on the internet…makes me wonder if other people are finding them not working. I know my one nerve is very deep and having the sensor on it can be very challenging — even for the Walkaide rep who is a PT who recently reprogramed me and said the new cuff would be better.

Hearing of more people using the Walkaide than the Bioness. The Walkaide using use a regular energizer battery is a plus. Remember to change it regularly because when you get the beep, you only have a couple of minutes to put a new one in, I have had it happen to me. When it happened, I was walking around the club house looking for a smoke/carbon monixide detector going off — it was me!!!

March 17, 2011 at 10:41 am
(528) jill says:

I purchased the Bioness after much fooling around with the product. I have not tripped over my toes since. The problem I have with it, is that it is relatively heavy, esp since I’m in the middle of an exacerbation and wearing the Bioness for even a few hours really fatigues the leg. I did two week trial with the walk aid after reading about it on this site. I like it much better. It is much lighter, easier to adjust and I like not having a foot sensor.. I wish I had been told about this before I purchased the Bioness, because I would have purchased the walkaid. I find I wear the bioness much less time than I was wearing the walkaid because I would put it on with my slippers and not have to put sneakers on early in the am. Now I just have to decide what to do! Not a cheap decision!

March 17, 2011 at 4:41 pm
(529) Irene says:

I have not been on this site for a long time. I have had a Bioness for over a year. While I am not thrilled with it, it does help a lot. I switched to the cotton electrodes a few months after owning the Bioness and I hardly ever have to change them. I have gone several months with the same pads. It is not so much the expense as it is the convenience of not having to change the pads, not having to order. Washing frequently helps keep the pads going.

Having MS is expensive. I have late onset MS, which appears to progress more quickly that adult onset. Whatever, it is a crummy thing to have happen. I have had PT, I exercise regularly (swimming and water exercise helps my legs the most), I take my shots daily and I take more pills than I thought possible. My right leg continues to get less manageable. I don’t what would happen if I did not follow my plan. And, of course, I read and read and read. I get excited about a possible drug or treatment and then find out that it is not recommended or has not been sufficiently tested or the positive effects reported are an urban legend.

I am looking forward to the Bioness L300 Plus. The plus means a cuff on the thigh with electrodes that stimulate either the hamstring or quadricep muscle. Hopefully the thigh unit will compensate for the loss of nerve signals to my very strong hamstrings. Does anyone know when it will be coming out? Expense? I heard there will be a trade-in offered. Another expense, but it might be worth it.

March 17, 2011 at 5:58 pm
(530) sterling says:

What a wealth of info on here!!! I am suffering from a spinal cord injury and wandering if when the stimulator activates, how does your foot react to contact with the surface? Does your foot just release with the toes subsequently slapping down?

March 17, 2011 at 11:24 pm
(531) sandy says:

oh my…i have so many comments!

john…i have MS. diagnosed in 1990. i use the bioness every day. i go to gym st least 3x/week. using the bioness for 2 yrs now. my ability to pull my toes up has increased since using bioness. my balance issues are from the MS. i do still have spasms & take baclofen 3x/day. my back hurts because my gait is so bad. the bioness helps me walk better but my back still hurts.

patricia…after reading your comments i called bioness. my 1yr warranty just expired. but for $500 they will allow me to get another 1yr warr. this irritates me so much! i ranted & raved for 10 minutes. they have us all stuck between a rock & a hard place. my ranting did no good! they leave us no choice. we have a $6200 piece of equipment & we have to pay more to make sure it will continue to perform as it should.

diane…my AFO has the hinges too. i too am surprised people are selling walkaids. has anyone seen any bioness units for sale? i too wonder why they are selling. congratulations on your daughters upcoming wedding!

jill…you are in a tough spot. since you already purchased the bioness i would be happy to help you address any probs you are having w/ it. if you start reading post #1 this blog & read all the way up to today you will hear about all of our probs in the beginning & maybe it will help you. again, any questions…ask.

March 17, 2011 at 11:26 pm
(532) sandy says:

irene…it is nice to see you on the blog again! as for the cotton electrodes, we spoke of them a LONG time ago. i started having problems w/ skin infections so i started changing them more frequently & my skin improved. i ‘googled’ “bioness L300 plus” & am quite intriqued! this sounds like something that may help me. looks like the phase III study will be completed in december of this year. it is a cuff around your thigh that uses stim for your thigh. interesting stuff!

sterling…w/ the bioness-when your heel leaves the ground the foot sensor tells the cuff to stimulate your leg. the stimulation goes on for 4 seconds (enough time for you to take a step) or until your heel is put down. the unit does not stim again until the heel leaves the ground. my toes do not ‘slap’ down because when i take a step i complete my step before the stimulation ends.

does anyone else have a ‘support dog’?

March 18, 2011 at 8:57 am
(533) Diane says:

Interesting about the possible new Bioness coming out…I assume it will have a foot sensor?? That is the key to me now liking the Bioness. That sensor was so irritating not just on the bottom of the foot but also rubbing on the outside of the ankle.

Never even thought about the Walkaide warranty. I have had it 2 years and the only additional expense is the electrodes and I purchase one new cuff a year because the cuffs get “scruffy” looking….but the new cuff will take care of that…it is just bulkier.

MS is very expensive from the meds to equipment and your day not only changes from day to day but hour to hour during the day. The amazing thing is I have worked my entire life and now am having trouble doing what I did and cannot get any disability — MS not really recognized and some that do have it it took an attorney and a couple of years to get approved. I am contemplating doing this as I am only 60 and 6 years away from SSI.

March 23, 2011 at 2:05 am
(534) warren says:

I’m new to this group.

Had a stroke and have foot drop on my left leg.

Anybody had serious recovery from stroke? How?

Also, is there a time-tested method of adjusting the Ness L300? I absent-mindedly moved the electrodes.

March 23, 2011 at 2:05 am
(535) warren says:

I’m new to this group.

Had a stroke and have foot drop on my left leg.

Anybody had serious recovery from stroke? How?

Also, is there a time-tested method of adjusting the Ness L300? I absent-mindedly moved the electrodes.

March 23, 2011 at 8:31 am
(536) Diane says:

Warren, have you tried calling where you purchased the NESS from? I am sure they would reset — I know with the Walkaide I can call the place I purchased from does it. In fact, the sales rep (past PT person), came this past January to do it himself. Hang in there with your recovery. My friend’s husband had a stroke and it took him a year to regain his strength and speech back to normal. His only remaining disability was ability to concentrate for long periods but if you didn’t know, you wouldn’t know. I wish you all the best. Remember PT is the best to do on a regular basis and I understand better said than done. I also can get lazy rather than push myself thru the grueling exercises all the time. Stay with it!!

March 30, 2011 at 4:27 pm
(537) Bobby says:

Hello, I’m looking to try the L300 for MS. I have a balance problem…how does the L300 help with balance?

March 30, 2011 at 4:33 pm
(538) Robert V. says:

Does the L300 help with balance?

March 31, 2011 at 7:21 pm
(539) Irene says:

I have heard from two sources regarding the Bioness L300 Plus. 1) I asked about it on the Bioness Facebook page and got the reply that the device was waiting for FDA approval.
2) I was told at the major ms clinic that I use that a Bioness sales person had talked to their staff and said that the Bioness L300 Plus would be available within weeks and that that the therapy center at the clinic would be getting the devices to use for patient training. I am resisting the impulse to call every day to see about availability.

I am guessing that it would have a foot sensor since it will have two cuffs–one on the thigh and one below the knee. Something is going to have to trigger the nerve stimulation.

I am 67 and have had serious regression of nerve functioning in my right leg in the 30 months since diagnosis. I work hard to keep active and fit. I am hoping that the L300 Plus will helping my walking enough to keep me upright. I like the idea of being bionic–it meshes with my love of technology. I thank God for knit jeans that will stretch over the Bioness cuff. My fingers are crossed that the Bioness L300 Plus will come soon and be at least half as good as my highest expectations. ( and not be very, very expensive)

March 31, 2011 at 7:34 pm
(540) Irene says:

Regarding balance: The bioness does not help with balance. JHowever, I did read that walking on a treadmill is the only known exercise to improve both gait and balance. I use my L300 on the treadmill so that I do not trip. I would guess that properly walking with a walker will also help gait and balance. The walking habits that I developed trying to compensate for the loss of mobility on my right side basically weakened my right glutes, hamstrings, and quads. So I work on exercising those muscles. I also have a stim unit to stimulate those muscles. It is passive exercise and is great when I do not have the energy to do anything else. The electronic muscle stimulation is as fatiguing as actually working the muscles–but you can do it lying down.

April 1, 2011 at 7:24 am
(541) Diane says:

Robert, Irene is correct. The Bioness will help stimulation to your nerve (if you have foot drop), but, only PT will help balance. Walking forward and backward on the treadmilll is great, so is a balance board, and then trying to stand on one leg (be sure to be by something to hold on to for all exercising of balance). I also use a stretch band that I tie onto a firmly planted object such as a pole and have the other end with a tied opening to slip in my foot and stretch by leg forward, backward and sideways — trying to help stability of the leg. It is amazing how long I can stand on one leg and the bad drop foot leg is barely 20 seconds. I also have continuing symptoms of drop foot that get worse and am hoping to try the new Bioness as that may help my quads on the bad side which get weaker no matter how much exercising I do. I have the Walkaide because two years ago, that worked better for me than the Bioness I rented for 4 months. If the new Bioness works well, I probably would purchase that too.

April 8, 2011 at 9:14 am
(542) Diane says:

I spoke to the Bioness rep and will be contacted in July after the new unit is approved. Apparently, it will attach to the thigh and is meant to stop the knee from jerking backwards which some people suffer from (I have it occasionally and remember back in 2004 when I was being sent to sports medicine doctors for what they originally said was just weak muscles, I was saying, my knee feels like it wants to bend backwards and not forwards). It would be work in conjunction with the L300 below the knee. It will not help in raising the leg.

April 9, 2011 at 7:42 pm
(543) John says:

I did go to the clinic, and did get one programmed, and am booked again for next Thursday. I’m just curious if others have left the stimulation on a low level at start, to get use to it? It goes off sometimes as I’m sitting and moves my leg a tad. While at the clinic, being programmed I did have my foot come up quite a bit, but I’m not giving it that much juice. I just want to get use to it first.. Maybe 2 or three days.. He said level 1 and 1/4, that is low, but nonetheless I have finally started..

April 9, 2011 at 9:43 pm
(544) Lisa says:

JOHN
I was wondering how it went for you? Glad to hear they got it programmed and it’s lifting your foot. I don’t have the same physical condition you have but when I tried the walkaide I couldn’t tolerate the stim (set on 2) at all by the end of the day. If you don’t get use to it, try having them put a smaller input pad and large output pad. My tech said that could make a difference and they will try that on me the 26th. But I’m leaning toward the bioness because during the 3 week trial period I found the stimulation to be way more comfortable. Best of luck.

April 9, 2011 at 11:04 pm
(545) John says:

Hey Lisa!!

I matched everything from the one that the clinician placed, and now have both of them on, the one that I did, I feel is better placed. My concern is though that if I pick up the pace while walking, I feel some shocks here and there, originally on the first one that was put on, but now also the second.. Could my pads not be sticky enough? They are new, but maybe I have to do a better job..

Yeah, maybe the bioness is better, but I will give these a go and see how they pan out. These do fire at the same time, here and there, maybe I’m just new to this and need more time..

April 11, 2011 at 9:05 am
(546) Diane says:

John…first, your setting at 1 can be different than someone else’s setting of 1 because it is done in the computer and it can be changed (also set to your walking). I used to have a high setting at 3 and was reprogrammed and now 5 is a high set. When you body temp changes or movements your stem can change. If I am on the bike or treadmill and my body heats up, the stem number has to be turned down because the contact gets so good. That is one thing I liked about the Walkaide — easy to turn the knob under my clothing.

I still have the problem that when I am in the Orthopedic office and they reset with the computer, everything is fine and the next day I’m playing around with it.

Too many people think they get it, strap it on and off they go. That would be nice but it does take continuous changing of setting on the knob and maybe taking it off and reputting it on if you still are not having good contact. and most important, these are not miracle workers, if you do not do PT daily, you are wasting your money.

FYI….the other day my MS symptoms were making me very tired and my leg didn’t want to really move up at all so I was back to the AFO for two days…today I’ll be back to the Walkaide. Good luck and keep us posted.

April 11, 2011 at 5:40 pm
(547) Lynne says:

I am going thru physical therapy. I am back and forth on the walkaide and the bionesse. I cannot make up my mind which one i like the best. Can someone please give me some ideas what to look for. Of course i like the walkaide’s price better!!

April 11, 2011 at 5:43 pm
(548) Lynne says:

I cannot decide on bionesse or walkaide. I like the price on walkaide the best but not sure which one is best for me. Anyone have any ideas on what to look for!!

April 11, 2011 at 6:38 pm
(549) sandy says:

lynne,
for LOTS OF INFO go to the first comment of this blog & start reading…it will take some time to read all our posts but you will gain a lot of knowledge! diane uses the walkaide & i use the bioness. when you see our names in the early posts…it is us.
happy reading!

April 11, 2011 at 11:25 pm
(550) lynne says:

Thanks sandy and everyone. I appreciate all your help and all the comments. I will keep reading all the post.

April 12, 2011 at 10:32 am
(551) John says:

Diane,

yes the clinician was programming with a computer, but by moving the electrodes you stimulate different muscles. As I said though, I was able to get better stimulation on my second one, which I put on. All the marks were gone from just below my knees, so I was trying to set up an exercise regiment yesterday, and seen that by not triggering the right muscle this will not work. My foot was going down on some instances, and going sideways on others.. I am going back on Thursday and want to make sure I get the right location,and I have to keep it marked. In regards to yesterdays exercise, I did have better luck with the second one again, my left leg seems more receptive.

I may try again this evening, I wish there was an image on the net, on an area where the electrodes would generate the most benefits.

April 13, 2011 at 2:30 pm
(552) Diane says:

John, just keep with it…remember there cannot be a diagram because everyone is different. Remember the electrode does a stem to your nerve and the nerve reacts to the muscle. My one nerve is so buried behind stuff in my leg that it is extremely hard to get all the time. I am fortunate the front nerve is easy and allows my toe to always pick up and I just have to watch the side of the foot catching. I am starting a new PT program on Friday to re-tool my gait, strength and they’ll all balance but that one I am pretty good at. I was at the MS hospital today and had to change my setting about 4 times as the day went on and if you cross your legs, you’ll have to check the cuff placement. It is a very expensive and very sensitive piece of equipment. All the best to you and everyone else out there that has walking issues and those compounded with MS daily symptoms.

April 14, 2011 at 8:03 pm
(553) John says:

Diane,

Great news!! I had the right one programmed again today, it is perfect.. I’ve had it on most of the day, and it’s been a blast.. I tried copying the layout for the left leg, but no luck.. The right leg is much better than before, and I will keep the location marked. He did a better job with the programming via the computer.. And you were right, everyone is different, it took some time top fine tune it.. So I will do the same for the left leg in 10 days, when I visit him again.. Hope you’re doing well, and good luck with the PT program tomorrow..

May 2, 2011 at 9:21 pm
(554) irene says:

Diane, I just read your comment on the L300 + All the information I received indicated that it would stimulate either the quadriceps or the hamstring with the purpose of helping to lift the leg. Those of us who have the L 300 will trade that in for the L300+ I am sure more money will be required. If it only keeps the knee from snapping backward, it would not be worth any additional money to me. I received my information from clinicians who heard a presentation from a Bioness rep. Some days I have to really concentrate to lift my right leg. I am fighting the need for a scooter. But I may need one for those days when my nerves do not cooperate. I am so afraid of losing my independence and more important, my will to fight.

May 3, 2011 at 9:39 am
(555) Sandy says:

is anyone on the new oral medicine “gilenya”? it was just approved sept 21, 2010.

May 3, 2011 at 4:45 pm
(556) jill says:

I started on Gilenya 1 month ago. I have not had any problems with the medication. I had to spend 6 hours at the doctors office when they gave me the first dose to monitor heart rate and blood pressure. Apparently the first dose potentially can lower your pulse. I had no problems. It certainly is easier than an injection every day and IVIG once a month. But the proof will be in the long term. I certainly hope that it cuts down on relapses and that its use will become more widespread.

May 3, 2011 at 5:19 pm
(557) sandy says:

omg jill i am so excited to talk to someone who is actually taking gilenya. i did the ekg & blood work last week & i have the eye appt tomorrow morning. i don’t know exactly when i start the gilenya but it will be very soon. i am too ready as i have been on betaseron for 15 full years (2737 shots!) how long have you had ms? do you have many physical problems from attacks? did you notice any improvement in your physical probs since starting on gilenya?

May 4, 2011 at 8:58 am
(558) jill says:

Sandy
I have had MS for 11 years and for 8 years it was very stable. 3 years ago I noticed inc weakness in my right leg but not significant to slow me down or keep me from working. Last July I got bronchitis which sent me in to an exacerbation from which I have still not fully recovered. I am now on SSDI which I am thankful to have but would rather be working. I am an RN and I know I will not be able to return to the same job due to a decrease in my mobility but I am hoping to get some retraining so I can work. I feel good on the Gilenya and have had no additional symptoms, so I just hope it continues. Idon’t think I month is long enough to say for sure
that is working. Prior to this past year I rarely had a relapse.
Good luck with the gilenya and keep me posted when you start.

May 4, 2011 at 6:26 pm
(559) sandy says:

jill
wow…i am an RN also! i did have to retire 5 yrs ago because of right leg weakness, foot drop & nearly numb hands. i miss nursing terribly. do you use the bioness? i’ve used it for over 2 yrs. i still have mobility issues & am quite unsteady so i am now on a list for a ‘support dog’. i am excited as i think it will really help me. do you have children?

May 5, 2011 at 9:36 am
(560) jill says:

Sandy,
We have a lot in common! I did try the bioness and did buy it,unfortunately. I never had the opportunity to try th walkaid propr to my puchase of the bioness. Although it did work, I found that with the weakness in my right leg the unit was too heavy and I didn’t end up wearing it as much as I should have.
And I wasn’t too keen about the foot sensor. I did tey the walkaid and like that much better. It is much lighter and I can get up in the morning and use it with my slippers or go with out shoes. I do have several other issues with my right leg,RSD in my right foot, right foot drop and now a partially torn menicus in my right knee. Hoping to have that repaired on the 17, but am nervous that the RSD will flare. Also Gilenya can cause a low white cell count and there is cause for concern in that department. The doctors are deciding if I need premedication before that. Yes, I do have 4 children, all grown, 2 living out of town. Keep me posted and have a nice Mother’sDay.

May 6, 2011 at 10:23 am
(561) Sandy says:

jill,
i received word yesterday that my first dose of gilenya will be on thrusday. did anyone go w/ you when you went for the 6hr initial dose? did you have any issues afterwards w/ driving home? one gal said she had ‘tunnel vision’ & had to pull over numerous times. did they monitor you closely during the 6hr observation?
i hope you have a very happy mother’s day too! how will you celebrate? i am having my mom & family over for lunch. my kids are 18 & 15

May 6, 2011 at 5:34 pm
(562) jill says:

Sandy,
I had absolutely no problems with the initial Gilenya dose. My husband dropped me off and picked me up, but I could have easily driven my self. I sat in the infusion room of my neurologists office for the 6 hours, with my BP and pulse checked every hour. For me the worst part was just sitting there for so long. Bring stuff to do and food. I think you’ll do great. Mothers Day will be quiet with 2 of 4 kids home. I am sure we’ll go see my mother in law. Good luck next week!

May 10, 2011 at 9:19 am
(563) sandy says:

today the FDA approved the bioness L300 plus! it says it should be avaiable within weeks to consumers. :)
i can’t wait!

May 13, 2011 at 6:37 pm
(564) lynne says:

I get my walkaide monday mourning. Will keep you all posted!!

May 15, 2011 at 8:29 pm
(565) Diane says:

Lynn…good luck with the Walkaide…let us know how you do. I use my daily but sometimes my leg has trouble lifting so I use it now (after 2 years) with an AFO to give extra stamina and lift. I just got the new cuff because the old one had to be replaced every year as it would deteriorate badly and the cost was $200 for each new cuff.

Sandy I want to try the new Bioness too. They just discovered that I have a problem with my hamstring and it makes my knee snap back and while PT has been helping, I am curious about the new Bioness because the knee snap back is what it is supposed to help.

Having MS is a daily guess of “what now” and “where do I go from here” but remember there is always someone worse off than you so stay positive.

May 16, 2011 at 4:16 pm
(566) Lynne says:

Thanks Dianne. So far o.k. I had to turn the stem down to 1 1/2 when i got home. She had it on 2 1/2. I think it changes when you have had it on for awhile. I turned if off while driving and while shopping in the store till i get use to it. The electrodes have to be changed every 2 weeks the clinician gal said. They are a little pricey. Around 310.00 for 1 year supply. Thanks again. Keep me posted if i need to know anything else. Any surprises or etc. Lynne

May 15, 2011 at 9:45 pm
(567) sandy says:

diane,
what medicine are you on? they just took me off betaseron & put me on the new oral drug, gilenya. i have only taken 4 doses.

May 16, 2011 at 9:29 am
(568) Diane says:

Hi Sandy….I asked about the new oral drug and they said no for me. I am starting Copaxone. Not happy about the daily shots and Shared Solutions will be training me. I am not starting until after my daughter’s wedding in June. I have been on baclofen (increasing dosage over the years), B-12 and Vit D daily.
Please keep me posted on your progress with the drug.

May 17, 2011 at 12:28 pm
(569) lynne says:

Diane. I don’t go back for close to 5 weeks to clinician to actually buy the walkaide. I only have the other set of electrodes, or sticky things. Will that hold me or should i buy the 1 year pack for around 310.00 or so ahead of time? Just thought i would ask someone who has experience with this. Thanks again for all the help. Lynne

May 18, 2011 at 7:57 am
(570) Diane says:

Hi Lynne, I change my electrodes every 2 weeks because the contact gets very weak. I know some people go 3 weeks and keep turning the number higher. Always remember to cover the electrode with the blue plastic and keep in the plastic bag at night because that keeps the life span going. I just purchased a 10 pack yesterday for $365 (goes up every time I purchase) and I had one package left, so I should be good until April 2012. When I purchased the Walkaide I think I got 4 packages (that was 2 years ago) and they are always changing things so I am not sure what you will get with your purchase. If you recently changed electrodes and have 5 weeks left, then the one pair left should skate you thru but if you are due for a change soon….that is a long time to go without a change. The one thing is that if you are going to purchase the Walkaide these electrodes do not go bad. I use the large square sticky ones. They have so many choices now — again, they are always changing. I have the new cuff but I don’t like it and am still using the grey one (although I have purchased 2 spare ones as they are not going to make that one any more). Good luck!! What I love about the Walkaide is that it is easy to change the “number” which I do often during the day and I walk on the beach with it with no shoes!

May 18, 2011 at 10:19 pm
(571) lynne says:

Wow Dianne thanks for the info. I guess i have only had it 2 days now and yes i am starting to get use to it. Maybe my physical therapist next wednesday will possible maybe give me an extra set. She is very nice but she had let me practice on her walkaide so maybe she has extra’s before i actually purchase mine Mid June or so. Mine are the large round ones. How long does it take to get use to the stemming? Like i said i have only had this since monday afternoon. May 16th. So hopefully i should be maybe o.k. till June 22nd. Will keep ya posted. I like that i can change my shoes out also. Thanks again, Lynne

May 18, 2011 at 10:48 am
(572) jill says:

Hey ladies,

I too have had good luck with the electrodes for the walkaid.
They last at least 2 weeks and if you wet them before you put on the walkaid the contact is great. I also like the idea of going without shoes but still getting help with the footdrop.

June 3, 2011 at 9:09 am
(573) Tenley says:

This device is wonderful. I have had it since May2009. I have found myself walking around my house without the use of a cart or cane. If you have footdrop due to Multiple Sclerosis as I do or not; you shold get this . I paid $6000.00. Anew company came out with a device called “WALKAID’ I may look into that also, it has less components to deal with.

June 3, 2011 at 9:56 am
(574) Lisa says:

I appealed my Insurance (Tri-care) military medical ins. twice and have been denied the bioness. They want published controlled studies, reports from professional med. associations, published med. organization positions, & published reports of nation accepted medical practice reviews.

So I have just resorted to ordering my own. The cost will be $6200 and will be well worth it to me although I wish it were cheaper and more available to others. After having it for a 2 month trial I realise how much more confident and stable I am when using it. I have told other people I happen to see that may be helped by the ness. One person was a VET and he is excited to get one for both legs. For those out there that are vets, VA will cover the ness.

July 28, 2011 at 10:59 am
(575) Dave says:

I have the L300 for the past 3years, and next month will be trying out the L300 +.

July 28, 2011 at 11:01 am
(576) Dave says:

I have used the L300 for about 3 years with no issues. I will trying out the L300+ next month.

September 14, 2011 at 9:18 pm
(577) ireneg says:

Dave
Have you tried it yet? I posted a comment regarding my trial. Comments are so sparse these days, I wonder how much info will get out through this site.

August 1, 2011 at 12:30 pm
(578) Lynne says:

My insurance just paid for a little over half of the one year supply of electrodes for my walkaide. But still are not paying for the walkaide. Makes no sense. Lynne

September 13, 2011 at 2:52 pm
(579) Rachel says:

I suddenly developed foot drop back in April. I have been going to my GP, then a Neurologist and now a Neuromuscular Neurologist. I have had 2 EMG’s that say there’s nothing wrong with my foot, ankle or leg. I have had 1 MRI , 1 Myelogram and a CT Scan (all of the lower back). I am told my back has some minor problems (Had surgery for a herniated disc about 25 years ago) but nothing to cause foot drop. They are wanting to do an MRI of my knee (just in case there is a growth), but my insurance company said no more. My question is this – When someone gets foot drop, is it permanent?

September 14, 2011 at 9:11 pm
(580) Ireneg says:

I met two times this week with my physical therapist and a rep from Bioness so I could try the Bioness L300 Plus. I loved it. The second cuff fits on the thigh and can activate either the quad or hamstring muscles. I tried both and had better success with the quad. My only disappointment was that I will not be able to get it until after October1. The consumer price will be available when the cuffs are available and there will be a trial plan similar to the earlier trial plan.
The technology is amazing. It is explained on the Bioness Facebook page and there are videos. Those of us who have the L300 will get the thigh cuff and a new control unit which will control both cuffs. The heel sensor remains the same. It appears that the calibration instrument is user friendly–at least for the Bioness rep.
My doctor is sending a prescription to Bioness and I will be on a list to be called when the units are ready for distribution. There is absolutely no hope that my insurance will cover this. It did not cover the L300. Maybe I can get a tax write off.

September 15, 2011 at 8:55 pm
(581) IreneG says:

I read some comments about Walkaid. I have never tried the Walkaid, but understand it is very good. I have had the Bioness L300 for 20 months and have benefited from it. As my right leg became more disabled because of MS, my mobility declined. I am especially glad now that I have the Bioness because the PLUS is a thigh cuff which stimulates the knee to lift and adds to my original Bioness. I do not know if WalkAid or others are providing a similar item. When I get the Plus part from Bioness, I will have four components–the original heel sensor, the original calf cuff, the thigh cuff, and a new control unit which will control all four parts. I did not have trouble managing three components and I do not anticipate difficulty handling four. The Bioness products are expensive and are not covered for MS by most insurance companies. I am on Medicare and there is no coverage. Hopefully it will be covered in the future. However, I am 68 and if I do it, it has to be now.

September 24, 2011 at 11:39 pm
(582) Buddy says:

Hello, I to have foot drop in my left foot, I had 2 ruptured discs. and had them repaired..i was showing weakness before surgery then after i couldn’t move it at all.’ i wear a brace and i was wondering if anyone had back surgery and using this machines? that brace is such a pain.. i know you all know that. any more info would be appreciated.

October 13, 2011 at 3:33 pm
(583) lynne says:

Anyone weat the bioness or the walkaide going thru security at the airport? I will be in a couple of weeks and would like some heads up on this please?

October 13, 2011 at 3:42 pm
(584) jill says:

I did travel with my walkaid on. When I got to the security gate I showed the inspector the cuff and they waved my through and did a manual scan. There was no problem at all.

October 13, 2011 at 4:06 pm
(585) lynne says:

Thanks Jill. I will keep that in mind when i wear it going thru the security check point. Maybe turn it off at that time, right?

October 14, 2011 at 9:07 am
(586) jill says:

I do not think I turned it off. I just pointed it out before going through the checkpoint.

October 15, 2011 at 12:37 am
(587) Lisa says:

I haven’t been thru the airport as of yet but was told by bioness to take a copy of dr. perscripion for the Ness &/or Ness Manual if any question should arise. Go luck and have a great trip.

October 15, 2011 at 7:08 pm
(588) ireneg says:

I have been through several airports with the Bioness L300. I just take the cuff off and put the control unit in my purse before going through security. I nave never had a problem.

October 21, 2011 at 12:50 pm
(589) Lisa says:

Sandy,
If you are still out there I wanted to let you know that I too have gone to the cotton stim pads. The original sticky pads were giving me rashes….I think from either not letting the skin breath or letting bacteria in from shaving?? So far love the cotton pads. Way more comfortable, breathable, and a wider stim area so poitioning isn’t as critical. I haven’t had to re-wet them during the day at all. Wish it was offered to me to begin with, but is definitley something for others to consider.

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February 22, 2012 at 4:10 pm
(591) Gelareh says:

I noticed about this device right now.
it seems very very expensive, especially for us don’t live in the U.S.
I live in Iran in Middle East.
do any one knows that how can I get the device?

March 5, 2012 at 8:50 pm
(592) Pamela says:

I have fourteen small cloth pads still in the packages. If someone would like to buy them let me know. I went to the large pads which work better. I thought I could go back and forth until I used up the small pads but the computer program was changed and I can not use the small ones.

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March 27, 2012 at 1:53 pm
(594) lynne says:

I am doing well on my walkaide. Just wanted to know. I change my sticky pads on them like once a month. I have almost a whole years worth left. The expiration date is like june 2012. It is already march 2012 and i have a years worth left. Do these get bad after the expiration date. They are so expensive to buy. My insurance still has not paid for the walkaide. Thanks, Lynne

March 31, 2012 at 1:43 pm
(595) The Doc with a drop says:

I have a left foot drop 2dary to MS. Currently on SSDI waiting for Medicare (2 yesrs to go). I have access to a R Bioness L300, but I would have to puchase it. Do you know if they can be switched? That is, use it on the left side?

March 31, 2012 at 1:57 pm
(596) Rafael Doc with Drop says:

I have a L foot drop. My insurance considers the Bioness as experimental, so they willnot cover it. I may have access to a R Bioness.Do anybody knows if can be used on the left? I would have to purchase it before I can try it on the left. I already tried it at the Rehab and found it useful.

April 17, 2012 at 12:45 pm
(597) tracy says:

I got the L300 for my right leg and it’s doing great. I have MS which effects both legs, but effects my right leg worse. With the L300, I have noticed that my left leg is getting weaker and my PT confirmed what I thought. Did you have that experience? and if so, did you consider getting an L300 on your other leg?

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April 21, 2012 at 10:59 pm
(599) Denise says:

Can anyone tell me the prices of the bioness l300 and the walkaide? I have not heard good things about the warranty for the bioness so I am leary of it.

April 29, 2012 at 10:05 pm
(600) yunnieman says:

I’m so glad to come across this forum! I am a post stroke victim, 6 years long. I got the Bioness L300 in August last year. It had pretty much been “Thanks for your sale” and got no support since. Been relying on the Internet and advice when I come across a fellow Bioness user. It makes me feel like there’s a chance this could work even though it’s been so long.

Is there a forum anywhere for us to exchange advice? I really could use some help. I used the Bioness and last week, I tried walking a whole lot for the first time for the whole week. (I was so happy to give my best friend a break from hauling me around in the wheelchair!).

This Monday though, I noticed tiny blisters on the back of my calf and a red raised welt the shape of my cuff edge on my calf. And the top of my calf is swollen.

I screwed up somewhere, didn’t I? :(

June 15, 2012 at 7:58 am
(601) Sara says:

So glad to have found other Bioness users! I am currently in a trial with the L300 Plus. Have been feeling like I am all alone in this experience. I look forward to reading all the past comments, asking some questions, and hearing from others with experience.

For starters…has anyone experienced technical issues? I had been using the unit for two weeks…thigh cuff went out. Tech support is sending a new thigh cuff but it is on backorder. Has anyone else had issues with the unit breaking?

June 30, 2012 at 3:48 pm
(602) Linda Clippinger says:

Does anyone have a swollen foot problem from using Bioness L300
I have used mine for a couple weeks now…it works but my foot swells significantly….your comments…clip@ defnet.com

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July 17, 2012 at 10:16 am
(604) Jose-Rafael Gonzalez MD says:

I had to stop working after 12 years, as the MS followed its progression history. Bought the Bioness L300 cash since my insurance ( Aetna) refused to pay for it. They consider this treatment as experimental. Everything was great until the system started to fail within three months. The leg part shows a fixed red Error after one step. I called Bioness, on a weekend since I was on vacation, but they were closed. I had to continue the trip without it. Upon my return, they called back and after going through the diagnostic workup they could do remotely, they said that it was an impedance problem. They suggested that I call the sales rep. in my area, I did as she told me. The sales rep can’t see me for 2 weeks. asnd suggested that I call the therapist. I am not in therapy Because the Bioness is my therapy and I waiting on the Medicare. I need to be fiscal with my funds until then. So buyer beware! I don’t know whether the the Walkaid has a better customer support!

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July 31, 2012 at 3:49 pm
(606) Sara says:

Jose, I can relate to your comment. When the product works, it speaks for itself…but when it does not the support seems to be lacking. I did decide to purchase the L300 Plus. My insurance has denied it but I am appealing the decision. There seems to be a missing link from the trial, to the purchase, to the practical every day use. I am so grateful for what it has given me but each day I hold my breath that it will work. I hope that by now you have received what you needed.

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August 30, 2012 at 9:16 am
(608) john says:

I haven’t been here for a bit, but thought this would help many here. I have Cerebral Palsy and are finding the having homemade juice everyday, Carrot and Apple mixed and not eating toxic foods has helped me. And it helps people with MS to a greater deal, Do research on the Gerson Therapy, watch the Gerson Miracle and a few other videos, and you will be astounded..

Hope everyone is doing well, and this is helpful to all..

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June 8, 2013 at 8:39 pm
(614) Jeannie Mcbride says:

My husband was fortunate to try all 4 – calf and thigh as he has foot drop both legs and weak hamstrings. Immediately saw improvement In movement snd noticeable less fatigue. Unfortunately our insurance Wont cover. The cost for all 4 devices quoted about 20,000.00 with 800.00 month payment plan. Hoping something changes eventually to make it affordable.

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September 4, 2013 at 9:24 pm
(618) Sue says:

I have used the Bioness 300 for about a year and am pleased with the results in regard to my foot drop with MS. However, after an expenditure of over $5,000, I have had no contact with Bioness or a representative of the company. I found the representative to be useless in the beginning anyhow. I believe she received her commission for making the sale and then apparently “left town.” I am very disappointed in their follow-up or lack thereof and would be surprised if their sales continued in an upward pattern.

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April 27, 2014 at 6:49 pm
(623) Cheryl says:

Jeannie Mcbride, your comment provided the best information for me. I just tried both the L300 (for the foot), and the L300 Plus (for the thigh) on both sides, and it seemed to work great. I could see this being a life-changing option, as I have foot drop in both feet, and I do a lot of hip hiking on my left side because I can’t bend my left leg properly. Just walking short distances is exhausting, plus it puts lots of pressure on my back and my right knee.

When I checked my insurance company’s website, I saw that they consider this “home exercise equipment”, which they don’t cover. However, if the Bioness person submits it to them and I get declined, I’m going to try fighting them. I’ll pay part of it if I have to, but I think at this point I think the insurance companies should be covering this since it provides such a benefit. If they don’t pay now, eventually they’ll have to pay for the other damage to my body if I keep walking the way I do now.

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