Bioness - Treatment for Foot Drop in Multiple Sclerosis

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

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.

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.

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

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

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

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

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.

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?

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.

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.

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!

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.

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

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)

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.

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!

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!

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.

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……

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!

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

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!!

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.

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

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.

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.

test

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!!

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.

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.

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…..

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.

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!

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!

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.

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.

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!

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’?

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.

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.

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

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?)

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.

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!

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……..

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!

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

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

We know what you meant….

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.

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

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.

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!

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

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.

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!

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.

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.

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.

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

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.

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.

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

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.

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.

diane-
how does the bioness ompare to the walkaid?

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!!

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.

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?

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?

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.

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?

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!

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.

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.

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!

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.

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.

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.

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…

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

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.

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?

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!!

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.

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?

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

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…

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

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.

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!

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.

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.

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!!!!!!!!!

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?

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.

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.

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).

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!!

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!

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.

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.

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.

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.

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!!

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.

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!!

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….

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.

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!

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.

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

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

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.

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.

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…

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.

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.

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.

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!!

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.

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.

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…..

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.

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!

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!

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.

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?

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?

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.

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

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.

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

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.

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

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!

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?

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!

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.

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.

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.

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.

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?

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,

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.

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

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!!

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!

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.

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!

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?

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?

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.

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!

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.

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.

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

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’.

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

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?

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.

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…

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.

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

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

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

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!

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.

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!

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!

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.

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!

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.

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.

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.

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?

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.

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?

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.

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.

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.

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!

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!

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.

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.

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!!

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.

Thanks, Jonna. You’re the best.

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?

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.

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.

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.

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!

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.

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

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!

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.

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?

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.

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…

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.

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.

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.

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.

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

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!

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.

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.

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.

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

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.

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?

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.

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

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.

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.

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

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.

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

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.

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.

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.

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.

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

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.

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.

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

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.

à òû ëþáèòñÿ ïîñòèòü âèäþõè âïðîåêòå?

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.

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!

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

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

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?

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.

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.

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?

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.

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.

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.

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.

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.

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…

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?

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.

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.

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.

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!

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!

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!

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

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.

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.

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!

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~

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!

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?

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

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!

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.

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

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!

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!

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!

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

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

I have 2 questions/
Sandy where are your from?

How do you do a google alert

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.

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

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.

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.

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.

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?

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!

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?

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.

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.

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”.

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

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!)

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.

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.

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.

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.

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.

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.

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?

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!!

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

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!

Thanks Sandy!

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?

Anne, mine took 2 full months!

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.

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!

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!

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.

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.

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.

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.

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.)

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.

Sorry misspelled it is recalibrated.

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!

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.

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?

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.

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.

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.

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.

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.

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.

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.

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.

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!).

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

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

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???

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.

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.

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!

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.

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!!!

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.

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.

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.

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.

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.

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!!

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.

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.

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!

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.

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.

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!

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!

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!

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!

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.

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!

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.

what time do the calls start?

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.

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

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.

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

Bev, if you’re still monitoring this blog, how did your procedure go last Friday? Is everthing alright??

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.

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.

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!

cath-
congratulations! you win the prize for the most unusual issue concerning the bioness!! i hope your “id” improves soon!

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.

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!

Already sent it but not having a valid email address

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!

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.

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…

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

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…….

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?

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).

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.

Hi Sandy,
I’m new to this site. I’m from Montreal, Canada. What does PT stand for?

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.

PT – Physical Therapist

Now that I know y

Hi Anna,
PT is Physical Therapist

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.

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…

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.

Hi Jonna
Thanks for your help.

You’re Welcome!!!

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!

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…

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……

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.

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?

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…

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?

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?

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.

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…

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.

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.

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

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

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!

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?

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.

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.

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.

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!

Thanks, do you have to wear special shoes with the Bioness?

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.

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?

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.

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.

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.

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.

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.

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.

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.

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.

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.

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?

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.

…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!

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.

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.

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.

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!

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?

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!

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..

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!!

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.

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.

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.

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.

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.

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.

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.

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.

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.

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?

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!!

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!

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.