Despite his exotic life, Jack Osbourne seems like a regular guy to me. I'm of the age to remember Ozzy, his father, biting the head off of doves and bats and I watched a couple of episodes of The Osbournes. Still, Jack comes across as a pretty normal, likable young man of 26.
I was pretty sad to hear of his MS diagnosis last week. I was annoyed by some of the headlines that I read, including People Magazine's "I Won't Let My Son Die," emblazoned across a picture of Jack with his mom, Sharon. However, despite some of the sensationalist language of the press, when you read the quotes from Jack, describing the optic neuritis that led to his MS diagnosis, as well as his devotion to his new baby and fiancee, he just seems like a guy you'd want to talk to. (Sharon also seems like a normal concerned mom, as well - I'm sure she is worried and has her freak out moments, but the headline that People Magazine chose sends the wrong message about MS, in my opinion.)
Anyway, here's your chance to talk to Jack. Send him a message in the comments section below. Tell him what you wish someone would have told you when you were first diagnosed. Tell him about your journey with MS. Give him some tips for making life a little easier. Say whatever you want - I'm sure he will appreciate it.
I'll go first, but I'll keep it brief:
Hey, Jack. Here is what I can tell you about MS, from my experience: 1) You will probably continue to freak out pretty frequently during the first year after you are diagnosed, wondering about the future and deciding every little twinge is probably a relapse. Then it gets pretty tiring to live that way and you will probably find an uneasy balance with this disease. After awhile, it just is what it is. 2) Ignore the people who tell you that "it could be worse." Also ignore the people that tell you that your life is over. Read some of these entries, which illustrate the extent to which people mess up when they are trying to figure out what to say to people with MS - MSers Respond: What is the stupidest thing someone has said to you about MS? 3) Lastly, I find focusing on all that is good in my life takes the pain down a notch and gives me a little edge over the fatigue. Kiss your fiancee and snuggle your baby often. 4) Take care of yourself, my friend.
Julie: First of all, your book rocks!! The Manifesto is one of the best books I’ve read about MS. As for Jack, here’s what I wrote on FB:
Hello, my friends…please don’t freak out about this week’s People Mag cover. MS does NOT shorten your life. This cover is sooooo irresponsible. Extraordinary progress has been made in fighting this weird disease and while it’s not fun feeling like a pincushion, it is NOT a death sentence. My 83 year old friend Lucille has had the disease for 57 years, and just retired 2 months ago!! In my humble opinion, use it or lose it, reduce your stress, and take UR meds. Life is good! xox
Jack, what a shock, for one so young.However, MS can affect anyone or any age, it doesn’t discriminate.
The best thing you can do, like I, read up about this illness, the more
you know, the better.
Keep your stress down and ask your Neurologist heaps of questions.
Get plenty of rest, but exercise is still vital to your mental and physical well being.
It affects people in different ways, so there is really no two cases the same.
Eat good wholesome food, avoid alcohol, cigarettes and drugs (if you can)….
Take your medication, as it should slow down the progression of the disease.
Above all, stay positive, they are doing tests now for a possible cure.
You take control of MS..dont let it take control of you.
I am 50 now, and have had MS for 9 years.I still manage to do alot of things.
Be strong…Kia Kaha (maori for stay strong)…
Join the MS support group, and just keep reading up on this illness buddy.
Good luck and take care.
Linda Murphy
Christchurch
New Zealand.
Jack,
I have found myself thinking about you a lot since the news of your diagnosis broke. I have also found myself thinking back to my own diagnosis which was right around this time 11 years ago. I am here to tell you that there are a lot of us sending you good energy.
How am I doing more than a decade in? Great. I eat a really healthy diet, I get a lot of sleep, I listen to my body more closely than I used to, I have eliminated as much drama and bs from my life as is possible, and I have gone about living my life. You will, too. Ask for help and support when you need it. Don’t be a hero. But, don’t be scared to continue living the life you love.
And know this: you are not alone. There is a whole MS community out there ready to answer questions, offer support, or just listen. Stay strong, Jack. You have MS, MS doesn’t have you.
Jack, I’m sorry to welcome you to the club. I’m in my 50’s and have been dxd for 4 years now and it’s still pretty new to me. But here is some advice: 1. Allow yourself to grieve; I cried for the first month, mostly in secret as to not alarm the family. With older children, I felt like I had to be strong and brave. Your daughter will grow up knowing and understanding your limitations (should you have them.) 2. Understand that EVERY case of MS is totally different. It’s like each of us has a different disease. 3. Find yourself a great neurologist as you will be seeing him/her frequently. Find one with understanding and compassion, not just medical knowledge. 4. People don’t “get” MS. Even you wife won’t understand it. If you don’t have symptoms others will think everything is fine and you are healthy. Not understanding that MS is like a sword of Damocles and the dx is with you every single day. And because people don’t “get it” you will hear every wacky comment imaginable. And because of that…6. KEEP YOUR SENSE OF HUMOR. My dx has become a joke in the family. It’s a great excuse if I screw up in some way. “Of course I can’t do that….I have an incurable brain disease! And that’s my story and I’m sticking to it.” 7. Do everything you can to stay healthy. Eat right, take vitamins, exercise, consider MS diets (Swank for one), REST . 8. The good news about this diagnosis is that it makes you be selfish about yourself, your time, your commitments, your health.
And thank you for coming out publicly. I was amazed when first diagnosed that medical professionals suggested I keep the dx secret. SECRET! Like it’s something to be ashamed of. Perhaps you can be a voice for “coming out” and a voice for the discrimination in the work place that you recently experienced. Best wishes and good health.
Colleen Stevenson
Houston, TX
Similar age and type dx to me…and I am now 55 and only just having my walking slowed down by my MS. By the time you are my age there will definately be a fix! Thanks for talking about it, the more we do the less frightened we will be.
Hello Jack,
Sorry to hear you have this disease but take heart, all is not lost. I was diagnosed over 10 years ago at the age of 30, a pretty typical age to get diagnosed. I still work part-time in a job I love, walk without much assistance, have a long term boyfriend and a supportive family.
The grief can grip pretty hard when you have relapses and I have found it very useful to get counselling with a trained professional at those times just to reduce the pressure on my significant others. I have found that this is my pressure release valve.
I eat in a healthy manner with a reduced saturated fat diet and organic food (google the names Swank and Jelenik and you’ll see what I mean), get moderate exercise, take vitamin D3 and fish oil supplements, take my meds religiously, try to take notice of what my body tells me and adjust my activity levels accordingly. I think that these things have kept me as well as I can be and a fully functioning member of society (with a few adjustments to my lifestyle and expectations).
I also keep tabs on the latest research on the web and through my uni library (I can recommend Pubmed as a great freely available online resource), and I can tell you that we live in exciting times. We know way more and there is a lot more money being poured into the research than when I was diagnosed.
Seek the assistance of the National MS Society. They will help you with basic information about the illness, inform you about the latest research and may put you in touch with support groups.
Good luck with it all, stay strong and hug your family and new baby tightly.
Cheers,
)
Jodi (from the Land Down Under
hi jack
my name is Elaine i was diagnoised wirth MS `3 years ago. MS is a hard disease to understand sometimes. it is just so different ofr each person that has it
but i want to just say in general—people who do not understand MS should not say anything!! Life is not over but at the same time—it will not be OK—just go one each day and enjoy life to the fullest!
best to you always. you will be in my thoughts and prayers daily!
Hi Jack
I think we are amoungst the luckiest of people – I know that seems a strange comment to make – but when you have MS you become acutely aware of others with more serious illnesses that are terminal and far more difficult to live with. I live in South Africa and there are not that many people here with MS so I do sometimes feel that no-one really understands. That being said – I live a normal life and I feel blessed to have more good days than bad ones. I run my own business so on the bad days I schedule the business around it – and it works really well.
Take one day at a time and never be afraid to ask for help or advice. People want to help.
May God bless you as you navigate through life with MS – may you find it more of a blessing than a hinderance.
Helen
South Africa
Jack, I can recommend a small army of wonderful qualified dr, acupuncturist, nutritionist, neurologists in the LA and Santa Monica region. Am I allowed to name names? I’d love to send you tons of books and information that helped me, including Teri Garr’s autobio
what I CAN tell you is HEAT MAKES IT WORSE. Get your hiking and climbing in before 10 am, don’t sit in hot tubs or saunas, don’t go to HOT YOGA, don’t sit on the beach. After 80 degrees, symptoms go crazy.
I had to move to Oregon from LA because the weather is cooler and less stress overall. I worked in movies below the line. I was not able to handle the 14 hour days. Remember Jack, your money or your life.
don’t be scared. you have always ruled and you will continue to.
Jack,
20 years ago I was first diagnosed with MS after experiencing problems with my vision. Since that time I have picked up my exercise routine while at first taking three of the ABCTR MS drugs available. Over two years ago I decided after much contemplation and discussion with various people on the subject I decided to HALT taking any and all MS drugs. Unfortunately, there is little information provided to the docs to give them enough knowledge to truly quantify what these drugs can or cannot do for people they are prescribing. IT is a guessing game that I decided to no longer play for the past two years. Fortunately, I have not seen any further progression of the disease and life is good.
My prayers go out to Jack. I was unofficially diagnosed with MS at 26 … 8 months after my son was born (officially @ 31). I had optic neuritis. When I read the article in People, I thought, that is so close to my story. I’m now 43 and my son is going to be a senior in high school. I have RR MS and I’ve had some pretty down times (especially in the last few years). I’ve been in and out of a wheelchair, used a walker and depended on a cane on several occassions. I’ve tried Rebif, Copaxone, Betaseron and Tysabri. All of the therapies have affected me differently and currently, I’m going to restart Copaxone. MS is NOT a death sentence (although it feels like it sometimes). I can honestly say that I’ve had seriously sad, frustrated moments. But, attitude, love and support are the key to getting through it. Along with monthly support group meetings, I also participate in the MS Walk every year in my area. I absolutely LOVE my neurologist. It is very important to feel comfortable with the doctor. He/she should have immense knowledge and empathy. Although life is never the same after such a crappy diagnosis, focusing on and doing what you can do as opposed to what you can no longer do is key. I have to teach myself that lesson everytime I relapse. GOOD LUCK and LOVE TO YOUR FAMILY! Also, please let Jack’s mom know, God didn’t think too much was good… God has a plan. We don’t always understand it, but, it’s never to hurt you.
http://www.latimes.com/news/nation/nationnow/la-na-nn-multiple-sclerosis-jack-osbourne-going-public-20120620,0,7938077.story
Not always a good idea to go public…at least not for the majority of MS sufferers who are not celebrities and whose stories will not be publicised by newspapers, websites and blogs…
Jack- I was diagnosed at 15. I am now going to be 29 and doing just fine, holding 2 jobs and married and still quite happy and see my RRMS as an annoying thing that I can control with attitude and living better. I think it is simple you have a choice, you can choose to fight and make things happen for you in your life or sit back and let it slowly take you over. It is not what anyone else tells you, family, friends or spouse or a book about changing your diet and getting acupuncture. It comes from you believing in yourself.
Jack,
Sorry to hear that you’ve joined our club.. I was 26 as well when diagnosed via optic neuritis. That was two years ago. I’d be lying if I said your world isn’t going to be turned upside down. It is. But as Julie said, this first year is going to be the worst, especially in regards to adjusting and with paranoia. However, you WILL come to terms with this. You WILL learn how to manage the new hand you’ve been dealt.
Find the best neurologist you can afford.
Take control of your life.
Exercise.
Talk with your doc, and decide on a disease modifying therapy.
Take your vitamins.
Be your own MS expert.
Get a regular sleep schedule.
Be Jack. Don’t be “Jack with MS”.
Jack,
Welcome to the “club” I guess. In my experience, the thing that will help you the most on this journey is a positive attitude. I was diagnosed in 1998. Thankfully, so far my MS has been an annoyance but not much more. Just always remember…you may have it (MS), but it doesn’t have you. Keep calm and carry on.
Welcome Jack, not in a bad way but to a world of change. Change in a positive way, yes we have MS. But I have changed my life for the better. Changed my diet, changed my attitude and actually feel better that I am allowing my body to rest, feed on a healthy diet and still sustain my night life and excercise (took a little longer to understand a way). It sucks to be diagnosed, but knowledge of the symptoms and treatment is key. Understand the disease, the cause and ways to manage it. I hate the shots everyday, but it helps. I have two kids, gone through a seperation and working on my divorce. I have a black belt in mixed martial arts and push myself everyday. You can do this…
P
Dear Jack,
FIrst of all–YOUR LIFE IS NOT OVER–and MS is NOT a death sentence. I was incredibly angry at the People cover, and I’m sure they are going to hear about–LOL! Next, let me tell you a little about myself. I am 52 and officially diagnosed 3 years ago, but I suspect I’ve had MS for about 10 years. That being said, my track has been incredibly mild and almost negligible symptoms. I take a BOOT CAMP class 3 times a week and dance 2 times a week, walk, stretch, etc. No one would know I have MS, and sometimes I even forget. I agree with everyone who says STAY on you med (Copaxone–that’s what I take and consider it successful), exercise, take supplements, eat right, etc. You and your lovely little family are in my thoughts–sometimes it’s hard, but keep a positive attitude!
Hey Jack, Sorry to hear that news…but it is not a death sentence. Keep stress at a minimal, exercise and take meds. Oh and listen to your doctor, you will do great.
Jack, lots of great comments here. Yes, it will take time to adjust. Yes, people without MS don’t “get” it. Yes, find the best neurologist you can. Yes, eating right and exercise make a great difference. And keeping a sense of humor definitely helps! I’m praying for you as you make this adjustment.
Everything they have given me doesnt work just filling my body w/poisons good luck you’ll need it
I have also been newly dx’ed with RRMS.
The first thing I did was read read read…and obtain as much information that i could.
I was DX’ed on May 31 st of this year.Since then I have changed my diet completely. I am now Gluten free I avoid Dairy, try to avoid red meat , only sticking to chicken breast and fish, and try to stay away from sugar, which is the hardest thing! But I needed to do a life style change so i can try to stay feeling as healthy as possible and try to avoid further attacks.I havent even started the meds yet, because its still going through the insurance process then they will be mailed to me. They put me on Copaxone.
Although while waiting for the Copaxone to come, I have done so much reading and found info on a drug called Naltrexone. In low doses it has been studied for use in MS. I have read that Their were positive results. It goes by “LDN” Low Dose Naltrexone.
Just something to read about.
Has anyone posting on hear had any experience with LDN?PLease post if you have. From what I have read, I am considering starting out with it , rather then the Copaxone….And see if it helps any of my symptoms , if it does then I am sure it will stop the progression of the disease for me.
I hope what i spoke about was appropriate for this posting.
And jack, Stay positive , always think Positive, Have Faith, Things always work out!
Jack – In today’s celebrity/reality crazed media world I would hope that you would understand that what you say and what is written about your MS will be closely followed by the multitudes of “ordinary” people silently suffering out there. So if you’re going to step front and center on this keep that in mind, and please do what you can to educate others about the disease in a responsible and informed manner. Misinformation can be a big problem, not just for you, but for others who will have to face the consequences of that in our own lives.
So, good luck with your set of MS issues (we all experience it differently), but also let people know life goes on, and get in a word or two about the ridiculously expensive CRAB therapies we MSers take that many cannot afford, and the need for continued research, and how that needs government funding, and how a person shouldn’t be denied a job due to a pre-existing medical condition (a situation which you are now quite familiar with).
Hi Jack, i am a mother of a wonderful daughter her name is Vanessa, 3 years ago we found out about her MS. After finshing the medical school herself, to be a medical doctor, it is amazing to watch her dealing with the disease. She is the strongest person i’ve could ever imagined in such situation.
For now she is taking only natural remedies, lots of exercise, a good diet is vital to follow! Is always easy to say it, but all happens to us for a reason, try to transform your suffering, get in touch with your own spark of Spirit who can help your psysical body to deal with anything at its best! Don’t listen to anybody tells you otherwise! Awake yourself to the Present! Leave the Now, it is really all we have in our hands! Lots of love for you and your family!
Hi Jack,
Exercise even though you may be exhausted. Rest when you need to. D3, B12 and Magnesium are your friends! Be cautious about your doc’s…research on your own. Lastly, ROCK ON!!!!
Hey Jack,
I am sorry to hear that you have been diagnosed. I was diagnosed 4 years ago this September when I as 25. When you are in your 20′s, as Im sure in any age, it is a devastating blow. But, life does go on. The cognitive disfunction and heat intolerance have been the hardest things to live with. But, stay positive. If I have a moment when my brain quits working, I just make a joke of it. “Its the legions.” with a big LOL at the end. Always get plenty of rest. I know it took me a good 2 yrs to learn that. I thought I could be on the go and push myself like always, but I learned to listen to my body. To know when enough was enough. Its ok to not get it all done in one day. Its ok to nap and take breaks. I learned that shopping online is so much better than going to the store. Take your vitamin D and listen to your neurologist. He knows what he’s talking about. Another one that took me a good 2 yrs to learn. Haha. Take care of yourself
Jack,
Do your own research and you’ll learn how effective lifestyle and diet changes have been for many of us with MS. I recommend the work of Dr George Jelinek (he has MS), Dr Roy Swank( devoted his life to studying MS) and Dr John McDougall, to start with. I had one MS attack 6.5 years ago ~ optic neuritic, muscle weakness entire body, numb hands and feet. MRIs showed 4 lesions. Two weeks after my diagnosis I began following Dr Swanks recommendations. I am now vegetarian (taking diet a step further than what Swank says is necessary). I have never relapsed and am healthier than many of my friends (we are in our 50s) Learn all you can and change what needs changing, and you can control MS. Good luck!
Good luck Jack! Look into Dr. Terry Wahls protocol for MS! Awesome!
The biggest thing that you can do for yourself is educate yourself and those around you. MS is not fun, but it is not a death sentence either. You cannot look to anyone you know and say this person I know has MS and this is what it did to them. Each person is different and the course of the disease is different. Seek good, solid information. Ask questions. Take whatever treatment you decide to do faithfully. Stay fit.
Bottom line is that MS is something that happens. Your life is still your own. You are still the same person you were the day before the diagnosis. Go live your life as full as possible and treasure each day.
I’m 53 in a couple of weeks,… and have had this for 30 years. Told I would be in a wheelchair by the age of 30. IAM NOT
Fight your own battle, and believe in yourself. All of us journey through this on different paths.
Eat well, sleep well, don’t stress and exercise. Thank what every happens, you know you fought the battle well….
I’m cycling 1500 kilometers this summer for the End Ms…. I have secondary progressive and I will do this. I’m writing a blog on the journey.
http://cyclingtoendms.blogspot.ca/
LIFE IS AWESOME AND MS WON’T DEFINE ME..
Theresa
Just make sure you do your research and know as much about MS as possible. I really didn’t have a clue about MS prior to being diagnosed 3 years ago (when i was 25), I just thought it was a horrible disease that will land you in a wheel chair. I’ve learned that I can lead a pretty normal life, just be active, keep yourself in shape, treat yourself good in general. But keep yourself educated! You’re gonna be fine!
a great website is http://www.multiplesclerosissucks.com
you are wry enough to enjoy the dark humor, which I find very helpful
and congrats to you and wifey on your wee one
Hey Jack
I have had the illness for 22 years. I was diagnosed at the age of 20 and now I’m 42. This illness affects people in different ways. It is not a death sentence. I feel very blessesd. I’ve had 3 children and have a very supporting spouse. Yes you do have to make adjustments but you have to continue to think positive. Everyday I wake up, I count my blessings. Remember no one is promised tomorrow so you have to take one day at a time and do your very best to live that day to the fullest.
As a woman of 66 with MS, I am grateful for your positive attitude. Hang in there and I can assure you, and please tell Sharon, NO ONE DIES FROM MS.
Continue to enjoy life and especially your new baby. And remember, we may have MS but MS doesn’t have us.
Jack,
It is NOT bad to have MS! I am 49 years old and was diagnosed 29 years ago before there were any MS drugs. I was lucky..it forced me to take control and read about disease and holistic care. I married (a military officer thus MANY moves), had 2 children (now 13 and 16), jogged and drove with sunglasses with one eye covered because of double vision, learned to appreciate simple things!
Currently, I am on a gluten free diet and eat healthy whole foods (read Roy Swank’s MS book and the “MS Recovery Diet” by Ann Sawyer). I also jog on the treadmill at least 1 mile per day (that’s all time allows being a busy mom!).
Also…listen to your body! Rest when needed (I often take 10 minute cat naps during mid-day…it helps!)
You may learn, like me and other MSers, that heat brings on symptons, espcially fatique. I am a participant in Kessler Foundation Research Center’s (West Orange, NJ) “Season’s of M.S. Study”. For me, the Study simply confirms that heat and M.S. do NOT go together! (Thank you airconditioning and icepacks!)
My advice: -take charge and learn about the disease, -listen to your body, and -don’t let people feel sorry for you!
Laura Cummings
Picatinny Arsenal, New Jersey (at least for the next two years!)
Hi Jack,
I’ve written this before on this website — it is what I put in our Christmas 2010 letter (the year I was diagnosed): “When you have an MRI of the head there are four options: a brain tumor, a brain aneurism, multiple sclerosis or ‘nothing’s wrong — you are crazy!’. Of the four options, MS was, and still is our favorite ‘option’.”
On the flip side, I HATE it when people refer to those of us that are doing overall pretty well as having “benign MS”. Please don’t call my numb and tired benign!
Hang in there buddy!
MS is what you make of it. It’s not the end of the world disease like the media portrays it anytime MS makes headlines. I am 26 and was diagnosed with MS nearly 4 years ago. I tell people MS has to keep up with me and I don’t have time for MS to slow me down. Enjoy life and keep living.
Hi Jack sorry to see you have ms , I also have m.s. ppms I have a positive outlook and when I have the electric shocks going up and down my legs it is horrible . My advise to you is quiettly say to youself this is not going to beat me M.S. I WORRY NOW ARE MY CHILDREN GOING TO GET THIS TERRIBLE SILENT ILLNESS, Jack be positive and please hurry these docs etc for a cure to this. god bless take care xx
Well . . . spend a couple of months reading and learning. Follow what works for you. Above all – spend very little time thinking about MS. It is only a very small fraction of who you are and who you are going to be. You are a man, a son, a husband, a father, a sibling, a human etc. Focus on living a life of gratitude. MS can be a gift if you let it.
jack-hang in there, you’ll be ok. i am now 36+ years down the road w/ms–still here–still moving. mcc
Hi Jack. Above all else, the disease is just that, just a disease. It took me a while to learn this…I am still me, just as you will always be you. I chose not to think of MS as being “sick”. I was afraid for my life to change. I choose to think of it as just another challenge I have to deal with to get where I need to go in life. It isn’t always easy but, honestly, what is? It is devastating at first, then you learn you can still do. You can still live, laugh and love. Laughter and love are everything. The people who really matter still love you and the ones who can’t handle it will be replaced with those who can. In the beginning, through the horrible reality of the verdict, I didn’t really know this, but I do now. I fight to work, I fight to play. I make provisions and have plan Bs and Cs and as many plans as I need, like you will. You, who are still you.
Hi Jack,
I am now a 36 year old who once was a school district music teacher. Passion for my job kept me denying that any medically was wrong with me. The same as you I noticed a black dot in my right eye-which lasted a short time. I never had my legs go numb from the knees down, but my walking gate started to become unstable, the piano playing hands became unstable(slight shaking) and made me wonder what was happening. During this whole time of wondering whats up I was a staff member for the Wisconsin Music Ambassadors twice visiting 6 countries in Europe. ~ Okay I had a spinal tap like you did (Ouch) This was when they were able confirm that I did have Multiple Sclerosis. I cried and was in denial. Neurologically I was forgetting the many aspects of how to stay ahead in my music job. Do you find that you are getting more forgetful just recently? MRI’S are annoying, but some play your favorite music, Rock, Pop, Decades, Like the 80′s my favorite music decade. MS does seem to attack your little things that were so common and natural. Congrats on your new baby Jack!! Take care and always look forward to all the good things out there. Doctors/Neurologists are amazing, caring people who understand and help. Take care Jack and I love following whats happening with you and your family. It sounds like you have a good understanding and positive outlook~ which look me years. Work out cause it feels good!!!
Dear Jack,
I just want to say I am sorry to hear about your diagnosis, but it is not all the gloom and doom you are hearing. I highly encourage you to associate yourself with positive people. You will have to come to grips with the “new normal.” Everyone of us have had to learn this. It will take time and there will be some days that are harder than others, but don’t give up. I have been dealing with MS for 5 years, but I have met so many wonderful people along this journey that I might not have had the opportunity to meet. Stay prayed up and positive. Life is good and a journey.
Hi Jack: I was diagnosed with MS in 1994, still working at a law firm. I miss that interaction with the office people. My kids are grown although I lost my youngest son in 2004. I have two grandchildren. Jesus Christ is my Lord and Savior and He is seeing me through all of this. I pray for all people dealing with this very curious disease. I will keep you in my prayers Jack. Love Jewel
Hey Jack. I was diagnosed unofficially in 1988. Since then, the symptoms have come and gone. They are here at the mo, but very slight. The health service in the UK is awful, and I have very little time for the doctors here who have no idea of what can help. All the advice of rest, eat well, exercise when possible and stay stressless are great. I happened to meet a wonderful lady, a Kineseotherapist, and within days of her leaving me a couple of prescription drugs, I felt so much better. I am now her patient, and with her help and a little of my own research, I am managing to hold all the horrible symptoms of the MS at bay. I have also taken the first part of the course to be a Kinesotherapist. 2nd part in July and I can’t wait to qualify. One of the items I am on is a mixture of Choline and Inosital, also high doses of vitamin D, and they work! It is hard to come to terms with for a start, but you have the love of your family and majority of the world. I have kept this to myself to protect my family especially my son, and will continue to do so. It’s how I cope. Everyone is different Jack. It is a pain in the behind, but YOU ATTACK IT, not the other way around. Find a good complementary therapist or open minded neurolgist and go for the offense. I don’t think about it now because it won’t go away so why get worried and stressed out. Live life, enjoy your baby growing up and spend your time with your good lady. HAVE FUN!! I wish you much happiness xx
Hi Jack,
Sorry to hear about your DX. I was dxd in 2002 and the doctor said I had it for at least 10 years prior. Truthfully I remember thing going back to High School, I am now 55. Like everyone has stressed, keep stress at a minimum, eat well and get plenty of rest. And remember you have ms, ms doesn’t have you.
Debbie
I’m responding on behalf of my son (he turned 40 this yr) as he lives in East London – S.A. and he’s too busy living his life and MS just has to tag along with him. He was dx @ age 13 with MS by Spec Neuro Surg and confirmed by Prof. in Neuro from Durban – S.A. As a Mom ‘I read up on MS’ and all that forcasted doom in the books have not happened. He studied and became a Civil Engineer Specialising in Structures and achieved a CEISA award 2 yrs ago. He’s married 12 yrs and has 2daughters. They know the reason why Dad is now walking slow with 2 walking sticks – ‘it’s MS’. 4 yrs ago he was dx with Hodgkins Desease Stage 4 – Chemo treatment pushed MS into remission. He also had more energy! The Chemo versus his MS drugs seemed more effective! For a year now, he has stopped all his treatment- he could not feel much effect- if they were helping or not? Last month he visited a Dr in Johannesburg that’s busy with new research in MS. This new research is linking the Ricketsia virus to MS. My sons blood results has shown that he has this virus and is now get specialised treatment for it. When he can swim the Midmar Dam Mile again – I will let you know that the treatment has helped him!
He is the most precious remarkable son ever. He wrote exams at school with the left hand when his whole right side was effected. Remember the mind is very powerful and don’t form mind pictures of possible problems waiting to happen – do what you can for today and have plans for tomorrow and dreams for the future! And live!
Dear Jack,
I am always saddened when I learn that someone has been diagnosed with MS. MS is NOT a fun disease but I suppose no disease is fun! I started having symptoms when I was about 33/34 but was not diagnosed until I was 48. At first, I read everything I could about MS and I scared the hell out of myself! Please, try not to read everything about MS! You have a wonderful family and great support! Life is too precious to scare the hell out of yourself! I have been on the same drug for my MS since 2005 and I have not had a relapse in almost 4 years. My MRI’s have been very positive! I take supplements and I follow a diet to keep inflammation down. I am now 55 and I am doing OK. I am still ambulatory, I still do most of what I used to do. Yes, there are things I no longer do but I live a full life. I have a wonderful husband of 29 years and we have a loving, close relationship. Also, I hope you are able to sue those bastards who terminated your job based on your MS diagnosis! Take care!
Carol Rocha
Dear Jack,
So sorry to hear of your diagnosis. I was diagnosed in 2007, but the drs feel it was around for long time due to the many lesions on my brain. I can’t say i”ve sailed through the last 5 yrs. I will be honest and say it can be hell sometimes. Hold on to loved ones who understand and have empathy for what your going through. I used the word empathy not sympathy. Those who have this disease don’t ask for sympathy. it’s always been difficult when people say “but you look so good!” They mean well, but don’t have a clue. It’s war on the inside, and peace on the outside. I’ve learned to hide the pain behind makeup, hair looking good and dressing well. Only those close to me know when I’m hurting. I wish you a future with llots of love, happiness and most importantl a life without relapses. Hold tight to your wife and little baby girl. For loving them will always outway this disease.
Samantha
Hi Jack – Optic Neuritis was my first symptom at age 26 as well. Now I am 56 and am still ambulatory and work as a personal trainer for women who are over 50. I won’t kid you – sometimes this journey is very difficult. It will be hard for your wife to understand because you will be different every day.
But this disease is manageable. Listen to your body. It will need more rest than most others. Don’t feel guilty about that. Find a copy of the Swank Diet. Exercise as you feel able. Look into Feldenkrais.
Ask the Lord Jesus to help you. Take one day at a time. Trust that the researchers are very near to finding more ways to help us and hopefully cure us.God be with you, Jack!
Hi Jack, Along with everything everyone else has said I found one of the best things I did was to join a support group. I have been going to the same group once a month for 11 years. It is interesting to see the different degrees people are affected. From me looking at someone 10 yrs later still wondering what symptoms they really have, to seeing some people go from very mobile to fully wheelchair bound. I will never forget the comment a 35 year old man in a wheelchair said once…”The worst thing I ever did was start to use this chair, I have gone downhill ever since.” the power of exercise. I now use a wheelchair for distance and think of him every time i think it is so much easier to get around than struggling with walking. I get back to my walker as soon as i can.
(that man hasn’t been to a meeting in 7 years.)
Best of heath to you and keep positive. Your baby will keep you focused.
Please consider becoming a celebrity activist for research funding to end this life altering disease. We don’ t have many or any influential people that are able to use their recognizable status to go to bat for all us MSers. Your Mom is a born fighter, as she is a cancer survivor and your Dad is dealing with Parkinson’s and is still living his life to the fullest! For all of us who have MS, some days are better than others, but we all must fight and not give into the disease even when we are at our lowest! Thank you!
Hey Jack,
I’m 27 and was diagnosed this Feb after 2 months of off and on vertigo, double vision, loss of balance, and loss of hearing in my left ear. The last 4 months have definately been a roller coaster. It’s tough when it’s such an unpredictable disease and you get stories from everyone of the best case and worst case scenerios. It was especially tough at first because I didn’t know a lot about the disease and wanted to connect with other people with ms. Obviously, I came to a lot of very negative forums which will take you downhill really quick. I finally found some support that’s very positive, yet realistic on shift.ms. I hope you’ll check it out cause it’s the best thing I’ve found online since getting diagnosed. I wish you the best! Stay positive and keep your dreams big!
First I would like to start off by saying that I wish you all the best as you move forward with your MS diagnosis. On another note, I too first came down with optic neuritis and was finally diagnosed at 29. I have now had MS for 24 years, and I must say I was quite upset and disturbed by your moms comment about how she would not let her son die. If your mom understood anything about MS, she would know it is NOT a death sentence, and how very upsetting it was to read that comment. Although my MS is quite bad and I am in a wheelchair due to a doctors negligence, this is nt the case with most MS people, and it is quite upsetting for anyone newly disgnosed to read such a comment right on the cover of a popular magazine. Please educate your mom and tell her to refrain from such negative statements. Best of luck to you…….
My thoughts and prayers are with you, Jack, as well as your family. Your courage is evident. It will be needed, along with your sense of humor, and willingness to be vulnerable and ask for help when you need it. You are among many who will learn it is possible to live a good life, in spite of the idiosyncrasies of MS, and the way other people respond to you, when they know the diagnosis. (You will probably have fun coming up with creative ways to respond when people say, “But you look so good!”) I lived with the symptoms for sixteen years, before a migraine specialist finally got the correct diagnosis. After several months of fear and dread, I accepted that a rich and full life still can be lived. Now, twelve and a half years further on, I enjoy walks with my dog, reading – with the help of an enlarger, eating healthy foods, resting well, and laughing a lot with family and friends. All the best to you!
Hi Jack, I’ve had MS for 13 years and although I’ve had some ups and downs, this disease is manageable. I’m still working and enjoying life! Get proper rest, avoid the stress and keep a positive attitude.
There are plenty of support groups and the Internet has several good informational sites on MS.
Take care!
Hi, Jack -
The press has been just horrible about describing MS to the public – makes it sound like you’re going to die tomorrow. IGNORE THE PRESS. The best thing you can do is educate yourself and pay attention to all of the great advice noted above. I was diagnosed 5 years ago at age 59 and am doing fine – thanks to husband, family, great doctors, meds, PT and prayer. MS is doable – you just need to wrap your mind around being “handicapable” and not handicapped.
All my best to you.
Pat Evans
Hello Jack welcome to being part of my family!
I was 26 years old when I was diagnosed with ms. I just happily celebrated my 8th year with ms. Your probably saying happily lol yep that’s rite I never let anything get the best of me.
My sister also has ms. Diagnosed 7 years to the date. I’m proud to have her in my life.
I also have a little boy named Jack. On my bad days he cheers me up makes me laugh. You will learn ms can bring us down at times but our child or children are the ones who bring us up.
Remember MSERS are fighters. You are one tough man. We will all win this fight stay positive n happy n always keep moving n never over do it. Ps drink plenty of water. We may have ms but ms will never have us!!!!! Let win this one
Hi and welcome to the club nobody want to belong to! We have a on-line support group that is pretty terrific. You will enjoy the camaraderie and friendships as a extra benefit to getting your questions, concerns, and rants heard and answered by joining Daily Strength. I don’t know what I would have done without the support I gain from this group daily. This support community is out of this world friendly and supportive. I think we have such a fantastic group of people that come to this group, and I hope that you too will find this to be true. Daily Strength is a smaller community (than MS World). People really get to know each other and care for each other here. This will happen to you too, if you open yourself to the use of this Board by posting. Lynne
Hello Jack,
I am please to be able to be able to write to you, and I find it ironic that it occurs in this situation. I am a woman soon to be 55. I have had MS since age 16.. maybe even younger, but the diagnostic tests decades ago were a bit lacking. And there was little knowledge about the disease.
Despite Mom and sister Kelly’s, and even Dad’s, despair, there is the truth. Jack, don’t buy the Media hype. and for god sake, don’t accept pity. Jack this is about you, and it is here where you find out exactly what you are made of.
But first you cry.
Here is where you meet your strengths and weaknesses. Call it ‘grist for the mill’.
MS uncomfortable, to varying degrees at times, and it can be mostly disappointing. But Jack here is where you find ways to make it all work.
Despite the diagnosis of MS, I have completed college, I was in a commercial for MSAA, held a job, was published, etc etc. . I’ve done a lot of things, that didn’t add up to any type of fame or fortune, but I enjoyed the HELL out of all of it
You are far from dead, don’t let anyone convince you that it is time to give up. Far from it. You will, however, need to learn how to pace yourself. You will learn who is your friend,who isn’t. And you will learn to stay far from those people and situations that wear you down
Stay clear of stress, whether physical or emotional, and devise ways of handling the stress you simply can’t avoid. Get creative about what you do and how you do it. Keep that cheeky quality, of yours and nurture your sense of humor
Make friend with God, or the universe, or whatever you perceive as the power greater than yourself. And if you don’t have a belief in something bigger than you; get one.
On those occasions when you might desperately need someone to hear you, but no one is able to, its a handy belief to have.
Apart from that Jack, here is your oyster, the grit can turn into a pearl; and I truly hope it will
Peace my friend, I wish you pearls
Alway always keep your sense of humor. To the person asking about LDN. I was diagnosed in 2000, immediately put on Avonex. About 6 years later, I learned about Naltrexone(LDN). I started out on a very low dose ( 1 mg) and worked up to 4.5 mg. After about a month off the Avonex and on the LDN, I didn’t need a cane or my walker anymore! It has been a God-send for me. Doesn’t work for everyone, but it did for me. Good luck to you Jack – you’ll be fine with all the support you have.
hello jack,
my name is renee and im living in clearwater,fl . with my husband and i have a son-23 and a daughter-21. i was diagnosis with ms in 2008. ive have been through the shots and different things but could never manage taking the shots because i hate needles so bad. my neuro put on a new ms pill called gilenya and its just once a day and it works wonderful. have no problems with it at all. havent a flare in a long time. feeling great , some people would never even know i have ms. i work every day at an orthopeadic office from 8 to5 and still go home and get on my tread mill. also walk on my breaks. i just wanted to inform you of this drug in case you wanted to check into it. hope the best for you and your family. god bless you .
Jack,
I have had MS for 30 years and believe that yoga is
very beneficial. Not only for physical benefits, but also spiritual.
Keep a positive attitude.
Your baby is beautiful, as well as your wife.
I saw your dad with Black Sabbath in my younger years.
He rocks!
Take care, Jamie
Jack,
I want you to know that MS is not a death sentence. It isn’t fatal. That being said, one of the most important things I did for myself when I was first diagnosed at age 19 was take the time to mourn the loss of my health and the loss of the life I thought I would have. In the beginning of the disease, this was very important for me. There seemed to be a time frame at the beginning where I was allowed to wallow when i wanted to, for as long as I wanted to, and I’m grateful that I took the time to do that. It’s ok not to feel strong all the time. It’s ok to feel scared and it’s ok to let people know when you need help. You could never be a burden to people who love you, so don’t hesitate to let them be there for you. Your fiance and your daughter will only benefit if you are able to meet your needs first. This may seem a bit selfish, but it’s much worse if you push yourself to the limit and then have to spend twice the time recuperating. Try to stay positive, but let yourself have the time to feel bad too. There are days when I just feel bad for myself, and I just let that happen because that way I only spend one day instead of carrying it with me all the time. Each day, figure out what “normal” will mean that day and set your standards against that. This way, you are doing what you can and not setting yourself up for failure. MS is a disease that changes every day, so what is “normal” changes just as frequently.
Jack, I wish you the best. Get the best treatment you can find. Never give up. Look for ways to improve your health from diet and exercise to Yoga and mental exercise. You have joined the ‘Snowflake Club’. All of us that have this MonSter, have similar and different experiences. There is a lot of information out there. Some of it goes back 60 – 70 years. And some of it will probably be of assistance to you on your MS jouirney. Good luck JerryD
Welcome to the elite club of people with MS…As a whole you will find that before our lives living with MS we were active over achievers, at least everyone I know….And here is the thing, you can still be the same as you are now. Keep a positive attitude, even during your most difficult moments. Attempt to forget about this MonSter that makes life….well….interesting. Get all stressors out of your life., And just exercise body awareness…and exercise and eat well…Important as well. And I would like to make a plea to you….PLEASE USE YOUR INFLUENCE TO BRING ATTENTION TO THIS. Yes, it is fully unfair you got this…after all, like all of us, you did nothing to cause this ‘luck of the draw.’ But, I am a strong believer that this ‘thing’ is part of your life path. I know for sure it was part of mine. So as bad as things will get, know you are not alone and I believe I speak for everyone here….lean on us…your community…the elite culb of MSers…..
Dear Jack,
Research, Research stay strong and try to stay stress free (can be hard). I am injecting copaxone shots.(not as bad as i thought. I know of someone who has said that this medication has shrunk her leison in her brain. So this is positive news and i’m waiting for my next MRI, I hope and pray they shrunk..
Family, friends and meetings (ms groups) are very important.
I look normal blut no one knows how I feel inside. So i now realize some people don’t understand and carefull who i want to know what is going on. Due to the fact I am on disability and have not worked in 5 yrs. MS affects everyone different.
What i wish for is more housing for Disabled people. Waiting list is long and Condo”s are expensive.
Take Care,
Gale
Hi Jack,
I’ve never done anything like this before and wasn’t sure what I could say, but I’ve come up with a couple of things.
You’re probably afraid and any reasonable person would be. Make sure you have a neurologist who is open to any questions you have and don’t hesitate to ask. It took me 3 times to find a doctor like that and it was worth the search!
This diagnosis is not a death sentence even though sometimes you might feel like that. You may find limitations you didn’t expect at your age but they can be dealt with if you have the love and support of important people in your life.
The others who recommended the MS Society are absolutely right. They have easy-to-understand info and can refer you to any kind of help you might want. Ask them for a referral to a psychologist who deals with MS patients, because everyone needs someone who knows more about what you’re going through than the people who love you dearly but have no idea. It’s really necessary to talk to someone who has an understanding of the disease.
Keep cool in your first summer as someone with MS. It’s the best way to take care of yourself. You will overdo it some days, we all do, but you’ll learn to listen to your body and read the signs it sends telling you to take a break.
Good luck. Make sure you keep asking every question you think of and ask them over and over again until they make some sense to you!
Diagnosed 4 years ago and positively diagnosed as primary progressive in March of this year. I am 54, father of 7, sorry, only one wife to whom I am still married (31 years). I used to walk the wings of 747′s. I could fix anything I put a wrench to. I am one of the few people in the world who has flown over the reactor vessel (nuclear) in a man basket (man bucket on the polar crane). Won’t be doing those things anymore. I can barely walk the 600 feet down my driveway. It’s useless trying to use a hand tool. The utility I work for only offers early retirement at 40% of my base salary. Kinda hard to pay the deductible on these stupid drugs let alone my Wisconsin property taxes.
I’ve always loved my wife and children, living in the country, and fixing things. The heartache I face, is losing the ability to do stuff that was once so routine. Now, it’s dreading every morning and the shot every night. No way to ‘sugar coat’ it. You don’t die from M.S. You just fade away.
Your dad and zack wylde rocked it on ‘No more tears’, it’ll be okay. Have your folks donate some cash to C.C.S.V.I. research.
Good Luck,
Michael
Hi Jack, sorry to hear about your MS diagnosis. Our family has 7 people with MS in it!!! I know you will be getting bombarded with information and tips on how to handle your MS. I want to say, just take it all with a grain of salt, and take what is good for you. For me, it was a change of lifestyle that helped me, I had to slow down and stop burning the candle at both ends, and ZERO stress!!! Between my husband and I, we have 4 teenagers! I do all my work (housework) in the morning as the fatigue I get just gets worse throughout the day, I started on Betaferon injections but the side effects were awful for me, so I switched to Copaxone and it has been great. I have had my vision affected, my bladder and bowel, in and out of a wheelchair. My only advice…. Accept help when you need it! I shall pray for you, for you to stay in remission, and for strength for you and your family, and for it not to be passed down to any other family members. Good luck, and God Bless. Kind Regards, Suze.x
Jack,
Ignore the things that you see on magazines like People. There are many organizations out there to help you learn how to deal with this diagnosis. I was diagnosed 20 years ago and have taken the same medicine for 19 years but probably was experiencing symptoms as early as 30 years ago.
Get a good doctor and connect with the MS Foundation, NMMS, MSSA and other MS groups. They are there to help and they have lots of literature that might help your family deal with this. Above all this is not a death sentence.
Hey Jack
Really sorry that you’ve had this diagnosis. I certainly didn’t want it but three years on, in a funny kind of way, I’ve become grateful for it. Never really considered my mortality before but being forced to look at “the end” and the unpredictable route I may take there has made me feel more alive and ultimately no different to any other human being. All my ’30-something’ friends all seem to have developed conditions of some sort or other but have found being dealt a ‘bad hand’ has just made them better players.
Wishing you a great life.
DS
Hi Jack I have had MS for over 14 years and I’m still walking and doing pretty much as I have always done. Sure there is a lot to contend with but if you keep your sense of humor which I know you have you’ll do just fine and then people treat you normally. I was devastated for you and your family as you have all been through so much and I love you all. It’s a long journey and it’s life changing but I’m sure you can do it but we MS sufferers have only two choices one is to just get on with life and the other is to not and I do the first as I know you will chose. I hope you get to see this message as it all comes from the heart. Good luck Jack, go well you are so not alone.
Hey Jack
Really sorry that you’ve had this diagnosis. I certainly didn’t want it but three years on, in a funny kind of way, I’ve become grateful for it. Never really considered my mortality before but being forced to look at “the end” and the unpredictable route I may take there has made me feel more alive and ultimately no different to any other human being. My ’30-something’ friends all seem to have developed conditions of some sort or other but have found being dealt a ‘bad hand’ has just made them better players.
Wishing you a great life.
DS
Welcome to the exciting world of us MSRs!
I know from the past four years it is has been a super challenge (to say the least!), going from a relapsing-remitting to a primary-progressive diagnosis.
I’m sure it is overwhelming to first hear the news (I was actually quite reliieved that I didn’t havea deaadly tumor causing all of my freaky-balnce-issues!), you actually coulkd make a difference. Star-power goes a long way! I know that we will see a cure in my lifetime (go stem-cell rersearch!).
Good luck!
Steer clear of magic bullets. MS is a prime ground for pseudo science.
Best of luck!
Hey Jack!
You’ll be ok!
I had my 20th anniversay with MS this year. I still ride my horse, I still work out twice a week, I still weigh 110 lbs. at 55 years old. I was diagnosed when I was 5 months pregnant with my second child, a girl, and I got the amnio results and the diagnosis the same week. Yesss–it’s a healthy baby girl and yes, you have a brain tumor or–MS. Great choice, eh?
Cut to 20 years later and I am ok. Stand strong and keep the faith and take your meds and keep your muscles strong .It’ll be ok.
Hi Jack, I was sorry to hear for you that you have MS, but at the same time you have probably been trying to figure out what is wrong with you and what has been happening with your body! I know I was relieved to finally hear I actually had a reason for feeling how I was and not just going crazy! I am 42 right now and was officially diagnosed a year and a half ago, so this is still new to me as well….you have to do alot of research on your own behalf, as everyone with MS has different symptoms. I belief you will start to find the pattern that your MS is taking and what you can do to feel better, such as eating healthy and sleeping or resting when your body tells you to, not when YOU want to! You seem like a pretty smart man and I know your family is behind you 100%, your mom seems totally awesome! So, be our spokesperson will ya, MS is NOT a death sentence!! Take Care, Missy Port Huron, Michigan
Jack,
I was 17 when i got diagnosed with ms and actually i was more happy that they actually found out what was wrong with me. Until i found out what ms was. Take ur treatments like your supposed to and everything will slow down, i quit taking mine for a year or so and mine got alot worse. Keep ur head up! We could have it alot worse.
Jerrica north dakota
Jack ~ Here is what I have learned – MS is a really terrible disease. I was DX’d in January 2011. Since that time I have really been on a roller coaster. I am a teacher. My life is all about making a plan, reaching some pretty difficult goals, and pushing myself. With MS I have realized that I need to take the foot off the accelerator. I need to give myself a break. It is not easy to do. Certainly, I am not advocating giving in to MS. You shouldn’t do that. But, don’t charge ahead so fast and furiously that you end up hurting yourself in the process. One of the toughest things I have had to learn is to say, “No.”
I have had to search inside myself and find the person that I used to feel like. An acronym helps me do it: “DFTBA!” Don’t Forget To Be Awesome. To me it sums up my life with MS. Deep down inside, I still am ‘me.’ It is a daily struggle to reach down there, pull it up, and show the world that Awesome person. Especially when I am on stage 6 class periods a day, 5 days a week. But, what I have also learned is that by doing this publicly and by sharing my life (and struggles with others) I have had help & have helped others along the way.
Thank you for going public with your disease. I think you will find it is the best decision you could have made. You will help others & yourself so much more, rather than hiding away.
DFTBA
I know this is like a voice crying in the wilderness, but I’m a 71 year old male who was diagnosed with a progressive form of ms in 1995. At that time, the Hopkins doctor said there was no pill for that type ms at the time and I’d probably be in a wheelchair in a year. So I said, what the heck, I’ll try acupuncture (I’d started using it in 1993), I currently take NO meds and now go for a needle treatment with my Korean MD, am still walking, swam a quarter mile today, dod twenty minutes on my ole schwinn airdyne. Probably the worst thing that has happened to me is being labeled with ms…I choose not to live the diagnosis.
My story in a nutshell!
Bob C
couldn’t agree more – the People mag cover made me so very angry on so many levels – so many…
Hi Jack, it’s not all fun and games but it’s not the ‘c’ word either. Can’t imagine having to live constantly in the spotlight with our forever friend but just live Jack’s life and Jack’s MS, you have a great support group in your folks and I have no doubt you’ll do just fine. I also had optic neuritis and my biggest fear was my vision leaving and not coming back, hasn’t happened and I was dx’d in 1998. I no longer work outside the home but slow and steady wins the race and I’m still in it. Educate yourself, the Newly Diagnosed series NMSS really helped when I was diagnosed and these days the internet has great information and offers online communities who understand when the rest of the world does not. We are lucky to have MS at this point in time, I’ve been on copaxone since 1999 and have no intentions of changing any time in the near future. Hope it works out for you too. Don’t be afraid to reach out if you have questions, when I was diagnosed MS did not cause any pain yet pain was my primary complaint, and a gentleman my husband worked with, whose wife had MS, offered this advice to us: don’t let someone tell you something isn’t happening when it is. Good luck!
Hi Jack, I am really sorry to hear about your diagnosis, but know that this is not the end. You can still live your live fully. There is only one thing I will share with you that I did wrong after my diagnosis last year, do not let MS take over your live. All websites tell your that and though I didn’t want to do it I did it and I almost lost my husband because of it. Living everyday with what can I do today or I have this symptoms today, doesn’t work, just go on living and don’t stop doing things you used to.. live friend live. I am 34 and on disibility because of my illness, Rest alot, just an hour a day can make a huge divirence. Good luck. Try not to get sick with colds ect. I stay away from sick people… good luck and remember, you might not know us, but we all know what you are going through. Good luck
Jack,
I went into the store and saw the cover of the magazine “I don’t want my son to die” First of all freedom of speech, but I so agree with everyone else of course its not a death sentence. Jack I am 37 have had the disease 8 years I work full time single mom of a teenage boy PLUS voluenteer my time with hospice. Sometimes I forget I have the disease. I’ve NEVER once said why god me? I embrace it I thank him for it because it could be a death sentence , aids, cancer, brain tumor. Or any terminal illness. When I say I m grateful for it , I mean that because I’ve chose to have to live a healthier lifestyle then the one I was! Heat, stress and lack of sleep are your enemy! The more you put that priority now it will help. I’ve had a few flare ups bounced back and its so true Health is Wealth!
Well, you certainly have had some good suggestions and support here, Jack. Like everyone else, I wish you the best and want you to know that, eventually, most of us come to a state of some sort of peace with this. It is not the end of the world. I am 65 and have had MS for thirty years. I still run a business, although I put in far fewer hours than I once did. I am fortunate to have good people to cover for me. I practice yoga three times a week, even though I need to be near the wall for balance. Yoga has saved me. My higher power has saved me. Find one if you can. LDN has been great for me. I have more fatigue than I did a few years ago, but I am 65, after all. I disagree on one point made by others, however; I can’t recommend my MS support groups. Scares the crap out of me. I stick to Julie’s newsletter and msworld message boards. People with MS are the most generous in the world. We stick together.
Jack ,
I want to express that listening to your body is important. If its tired rest it, If it aches get a massage but watch the depression-Keep it it addressed. We all have good days and bad dasy. With MS you will experience good/bad MS days. Keep your weight down, get sunshine, take vitamin D and Linseed oil.
Look into water sports if you have muscle pain/spasms like I do. I keep a strong support group-see they are educated so they can empathize a little better.
Congratulations on your new show on SYFY. Pace youself, rest and eat well
Your fellow MS’er.
Pam
Hi Jack don’t let your moods get to you they will try to. i’m on Kalawalla its a nature herb from America & it helps my ms it may help. Take care get plenty of rest bye
Hey Jack
What a shocker – I know it was for me too but after all the endless Dr’s visits also came as a relief to finally have a diagnosis!
Knowledge is power – read read and read some more. There is so much research going on it is hard to keep abreast of things and you are young enough to probably benefit from it all. There will be good days, awesome days and then there will be the blue days – take them all one at a time and remember you are not alone. My children are still young and although they know something is wrong with Mum their innocence cheers me up – when I can’t do something or am having an off day they say “Its ok Mum it’s just the white spots in your brain”. LOL
Love your family and love yourself and when things get bad there is a large extended family here for you. Keep your chin up
Keep all lines of communication open. Listen to your body. Accept help when offered. Hate we share this. But thank u for coming out with your diagnosis and raising awareness.
The remark that irritates me the most is “I can’t believe you’re still working!” My life changed but did not end with the onset of MS. I try to show I haven’t given up by saying something like “I refuse to let MS beat me.” The benefit of my comment is that on a ‘bad day’ co-workers offer encouragement and support.
MS is part of the life of over 400,000 people and their families. You are not alone. There is no blueprint for dealing with it. Your best resource is yourself. Form a partnership with your medical team. Use the Internet to learn about the condition. Learn to listen to the signals your body will give you about dealing with heat and fatigue.
Do not let MS become your life. Maintain your interests and activities. Throughout life, most of us change our focus on interests and activities. If MS is a catalyst for a change find new interests and activities you can embrace.
I have read everything I could find on MS. The best book for me was not about MS. It is Strong in the Broken Places by Richard Cohen. Cohen tells the stories of five people with life altering conditions and how they deal with them. There is a Strong in the Broken Places website.
Learn and be strong. Celebrate the wonderful things in your life, cherish your friends and family.
Good luck and Godspeed.
The best thing I’ve done for me & my MS was to find a therapist who specialized in working with folks with MS. She helped me understand what is me getting older and what is my MS. More importantly, she helped learn to forgive myself when my body wouldn’t do what I expected it to be able to do. Be strong and let yourself ask for help when you need it!
Osbourne is a medieval English surname of ancient Viking origin. The modern surname (in its many variations) derives from the Norse name Asbiorn. The Vikings were fond of names indicating strength and conquest befitting a warrior. ‘As’ meaning (god) and ‘Bjorn’ meaning (bear), Bear-god.
Jack Osbourne has inherited a mutant autoimmune gene found in northern Europe. This theory is called The Viking Hypothesis. In the words of Alastair Compston, professor of neurology and head of the department of clinical neurosciences at Cambridge University “….as I understand it, they (the Vikings) were in the habit of leaving behind their genetic materiainl in the most generous way!”
Welcome the Viking Club, Jack
Dear Jack,
You are loved by many!
Terrence has done his homework.
Very interesting info on the Vikings.
Take care,
Jamie
p.s. remember to stay cool in the summer months.
Dear Jack
I’ve had MS for eight years now. You are still young; there is a much better chance of finding a cure in your lifetime than mine.
It is important to have a knowledgeable neurologist but also one which you feel comfortable. In eight years I’ve been through six. Don’t hesitate to switch.
Read and research, the more you know will be a benefit and do not hesitate to question your doctor.
Never stop moving and doing, don’t give up or give in to this beast even though the feeling can be overwhelming at times. Just think of what you’d be missing and those you’d hurt and disappoint…..it helps
me.
You have a great support system in your family. Lean on them when needed, they’ll always be there for you.
I wish you the best.
Hello Jack,
I’ve had multiple sclerosis for about 20 years, however, I wasn’t officially diagnosed until 5 years ago this year. 1). Understand that ms is not a one size fit all disease. Everyone does not experience the same symptoms. 2). Find a good neurologist that specializes in multiple sclerosis. Be truthful with your doctor, as well as yourself. 3). Begin to learn your body from the top of your head to the bottom of your feet. (Listen to your body) no one can tell you how you feel, only you know how you feel. 4). Discuss your feelings with your fiancee’ and get her involved with your health, as well as your family so that they can learn about this disease. Multiple Sclerosis is not a death sentence and let know one tell you that it is!!!! This disease has taught me how to listen to my body and know my limitations. After all these years, I’m still learning, but the point is I’m not feeling sorry for myself or expecting others to either. I want to live my life to the fullest and I’m sure you do as well. You have a lot to look forward to during your life time ms is just the bump in the road. Multiple Sclerosis is a part of your life, respect the disease, by respecting your body! Don’t worry about what you’re unable to do (if there is something you can’t do as well as you use to) focus on what you’re able to do. 5). Learn as much as you can about the disease and how it’s affecting you! Take care of your family, as well as yourself!!!
I am so sorry of your MS dx. It seems to come just when people have their life sorted out and planning a happy future. It is a huge bump in the road while you think of it in the beginning. Seems you have to go through some difficult steps before you can set your new and different life adapted to having MS. It takes time and you seem to have support needed to do it well. There is no way to rush it and no decisions have to be made before you are ready to make them. I’ve had PPMS 15 years and though I hate that, I feel lucky and mostly happy. I suffer less than many but my life is extremely different. Read as much as you can bare to filter out the facts. Your experiences are different from others with MS, but you can still learn the purest info from other pts. I do well by MS standards and focus on making my life the best it can be. It took some years and different mind sets, but my life is good and full. Your new baby can be your biggest asset and pleasure now. There are fewer doctors and professionals which are truly informed and a quality resource to rely on, as you will learn. There are many great areas of research to keep me hopeful, as well. I believe health isn’t as complex as drs profess and they body can function better when treated more naturally vs full of drugs and chemical. Some drugs may help learn and listen to your body. It knows more to tell you than any strangers can. I wish you the best in finding your way and in being the best dad to enjoy all the blessings to be found. Life is what YOU can make it. Take care.
Hello Jack,
I am so sorry for your diagnosis. I have two important pieces of information that I wish someone had told me, when I was diagnosed.
1. “Arm” yourself with information. (and remember that the information changes continuously…so, keep “arming” yourself.)
2. Make sure any doctors you “partner” with have compassion along with their education. There is nothing more frustrating, for a patient, than a doctor who does not want to listen to them (or discounts their feelings)!
Good luck,
Kathryn
I was diagnosed in 2004 with relapsing/remitting MS (RRMS), although I think I had shades of MS prior to the official word.
I know you and you family are going through an array of emotions right now. Even though MS affects everyone differently, my best advice is to learn what MS is and what MS isn’t. Don’t keep this information to yourself–your family and friends who surround you need this knowledge too in order that they understand how to best support you.
As stated many times above, listen to what your body is telling you. Use a calendar, journal, or just piece of paper to keep track of any symptoms or questions you may have–you are being bombarded with a lot right now and you don’t want to overlook or forget anything. Ask questions and keep asking until you fully understand the answer.
Like a speed bump, MS might slow you down a bit, but it won’t stop you. We are here for you and there are many reliable sources of information and good support groups on the Internet.
Life can be a challenge with many obstacles, but what you choose to do with those challenges determine quality and success. Take good care of yourself and know that my thoughts and prayers are with you!
Hi Jack
Firstly i would like to say how proud i am of you for openly saying that you have Ms when i was diagonozed in 2006 that was the last thing i wanted to say as i thought that people would judge me cause i have a condistion that their is no cure
I too have been diagnosed with MS by way of options neuritis as well. I agree that this disease process is scary but there are many types of the disease as well as new medication being developed. Life should be lived as though each day is your last. Sick or not.
Hi Jack,
You will get used to it, or at least understand that “it is what it is”.
When I was diagnosed, I checked the statistics in my area and discovered that quite a number of MS people would be at our shopping mall on any day. The point is that LOTS of us are out there but we are mostly O.K.
I noticed you mentioned bladder problems. I know what you mean. Of all the symptoms, that is the one that bothers me most. Second is fatigue. (Third is people who start little competitions for attention)
MS symptoms might not “make sense” to people around you. Be prepared for well-meaning people offering weird advice like “positive thinking”. Personally, I consider it my own business and I don’t like advice or comments.
Jack, you are probably struggling with a vision of your future. Your medical team can give you the best advice. I had MS for decades before diagnosis. I figured the future wouldn’t be worse than the past, so I wasn’t too scared.
Take care of yourself, young man. You have a lovely family and much happiness to come.
Sweetie, hang in there!
I was diagnosed 18 years ago and my daughters were quite small (almost 4 years old and 20 months old). They have grown up with it and we have learned about it together. Even after 18 years, I am only using a cane and have been taking Copaxone for 14 years. I believe that between the Copaxone and a positive attitude I get through. I’m still working full time and plan to retire in about 2 years. It can be done!
Jack,
I was so sorry to hear of your diagnosis especially since I have MS and know what it can do. My nephew (29) has just recently been diagnosed and he’s going through a rough time too. Although MS can be a debilitatinh disease, it’s certainly not a death sentence. You have to learn to control MS, not let the MS control you! There’s nothing you can’t do once you’re on the right medication. It may take awhile to get there, but you’ll get there! Hang in and take care.
Laura
Pittsburgh, Pa
Dear Jack: I fell in love with your “kooky”family in the years I watched your reality show. You and Kelly were just kids then, but so much fun to watch. I especially love your mom, Sharon. I prayed for her during her illness and was thrilled when she recovered. As for this most recent development in your family– I have read all the other comments. One stands out as the most important- Like our fingerprints, we all have MS in varied ways. Even if you find you run into some really bad days, it will get better. If you can manage to appreciate all you still have( a beautiful new baby, a gorgeous girlfriend, a terrific family, many friends and countless fans) you will be ok. My diagnosis came when I returned from my honeymoon! So, I know a bit about the WOW!! / WHAT the??you experienced. Happy moments should not collide with bad news, unfortunately they often do. Your mental attitude will determine how well you handle this “brand” we wear. I happen to H A T E the saying,
“I MAY HAVE MS, BUT MS DOESN’T HAVE ME!”( B.S. ) Somedays it does have some of us. Many glide through. MS wears different masks.
Some people do VERY well. Others not so well. I pray that you will be in the former group. The only people who need to be educated about MS are your family and closest friends. God Bless you. May your life be wonderful and full of love, laughter and purpose.
Thank you for making your diagnosis public, Jack. That was very courageous. Please don’t worry too much about your future. That fretting might do more damage than MS! There are great medications available now. I have had MS for over 12 years and I am still high-performing thanks to these medications. I try to live my life as I normally would by putting the MS in the backseat. When it comes up front with me, I just deal with it. Don’t be afraid of it. Whenever there is a bad day, I know that better days are around the corner. MS impacts everyone differently. Keep your courage. Keep your faith. I’ll keep you and your family in my prayers.
Jack, I was just recently diagnosed myself, I have been having symptoms, I know now, for years. It was a fall and a crash on the back of my head that led to a CAT which led to an MRI which showed the brain flares.. I was told that my optic nerve has been affected but that’s all I know… I’m not looking forward to daily injections… that’s the part that bothers me the most right now. Stay strong, Valerie
Hi Jack, you don’t know me but I know your precious fiancé Lisa. I worked at the small Christian school she attended & encouraged her to chase her dreams, & that she did! I am over excited for the birth of Pearl & y’all future together! When I saw the cover of People I was shocked! I do know one thing though, the power of Prayer works! You have a lot of people praying for you & your new family. I have a good friend of mine who has MS. Just recently she moved away to a colder place because the heat in Louisiana was making her hurt even more. I dont know too much about MS but i know as she kept her stress levels down it made a difference. Let Lisa & your family help you, your body is telling you it needs to rest. I will continue to pray for you, your strength & your future. Maybe one day I’ll get to meet your little family in person, God Bless You & stay strong!!
Hi Jack.
First thing I have to say is don’t freak. It won’t help but may make you feel better for about second. Its not that bad, yes it can be but with the right people around for support they can help take the edge off. You are young and fit, with your Mom, Dad and the rest of your family being strong willed as you are, it is going to be OK mate. Read and learn about it, knowledge is power. Take action, choose a drug, if that’s the way you are going to go, take it as soon as possible and look at the other options starting to come on board as treatments, there are a lot of money making scams out there, beware . Do what is right for you, eat well and exercise. Some people have their first attack and then nothing for many years, sometimes never again.
The final thing, no one knows it all, many would like to think they do but it is an open page only about you, you just gotta deal with it. You will be OK whatever happens man. Fear is your worst enemy, but now with 2.5 million new friends you are not alone in this.
Tony(“,) 45.
MS is NOT a death sentence. I was diagnosed in 1991 with relapsing remitting MS and am still going strong. Probably, People took one comment Sharon said totally out of context. I bet they were able to sell a lot of magazines that way. Anyway, keep going, never give up.
Jack
Its a confusing time when you’r diagnosed with MS, give yourself time to digest everything. Ignore sensational headlines & people who tell you your life’s over ( usually from people who haven’t a clue what ms is),learn to give yourself time to be yourself,appreciate what you can do not dwell on what you cant do anymore, however you feel from day to day dont berate yourself if its a bad day..its much easier to ”go with the flow” & to stay calm as MS is fickle & can change from day to day, hour to hour, even minute to minute.You may even find you are stronger mentally than you ever were, thats how i find myself now.Its not good to have MS but it can clear up alot in your head as to what you do & do not want,which to me, cant be a bad thing.Enjoy & live your life how you want to & not how other people tell you how you should.MS doesn’t have to be a millstone round your neck.
I thought I was actually going to die when I was diagnosed with MS. My first neurologist told me not to research MS (I wasn’t sure exactly what it was.). KNOWLEDGE is POWER!!!!!!!
It’s not the end of the world, and you can live a full and prodctive life.
Get started on an MS drug (I’m on 44mcg injections, 3 times weekly) & keep a positive attitude.
God Bless u & family
Hey Jack
Sorry for your MS diagnosis, but there are far worse diseases than MS. I am glad you were public with your diagnosis unlike other celebrities. In the last couple jobs I had, I did not disclose MS which then became stressful and it probably took a toll on my MS and well-being at my job.
I am a pharmacist who has had MS for 22 years. I was diagnosed 15 years into the disease, mainly because it was so mild. I had optic neuritis in 1990 and the first ophthalmologist diagnosed optic neuritis. The second neuro-ophthalmologist a month later said it was NOT optic neuritis. I have ‘invisible’ MS, my symptoms are sensory and cognitive. Since I have no spinal lesions, I don’t have any physical disabilities and probably never will. Sometimes I think ‘invisible’ MS is worse than ‘visible’ MS b/c people just don’t understand or they forget.
I have worked in a hospital and have seen patients with MS far worse than mine, which makes me feel better. Also, I would rather have MS than type 1 diabetes, Lupus, or Crohn’s disease.
I did a 30 mile backpack trip thru Yosemite and climbed to the top of Mt San Jacinto peak, (elevation 10,834 feet) last year. Yoga is supposed to be very good for MS, maintaining flexibility will prevent injury in the future; plus it gets rid of stress. I don’t care what the experts say, but cardiovascular exercise is also good. I do a bootcamp and am starting to run again. No pain, no gain does NOT apply to MS, it will just set you back a few days. If I exercise to pain/fatigue it takes me longer to recover.
When I did have pain from transverse myelitis, I opted for physical therapy and using a TENS machine rather than narcotic pain medications. (A pharmacist addicted to narcotics would spell trouble) I also took non-narcotic pain medications for pain/numbness but was able to wean myself off of them. I rarely have pain, or numbness these days.
I take vitamin D, fish oil (anti-inflammatory) and Copaxone for my MS. I am considering a treatment that is experimental in the US but available in other countries. The Swank diet or some other healthy diet will also help your MS.
Just stay informed and do your research about your medical choices. It is YOUR MS so you need to do what you feel is best. As much as people try to understand, they never really do. Stay away from quacks who tend to come out of nowhere when they hear that you have MS.
Rachel
Hi jack ,
sorry to hear about your diagnosis.Im 36 and I have MS for the last 5 years which i didn’t know till last month .I only found out as the symptoms were unberable during my regnancy last year and i got a referal. when they told me i was trying to find what i did to cause it . But now i know that there is possible cure out there with cell transplant or with Dr Zambonis treatment and if neither of them work Im sure something else will be available soon i m sure .I take each day as it comes and i enjoy the good days that i have rather than focusing on the annoyance that i feel when the b**** attacks . Beside i have 2 lovely boys that need their mom to be strong .live and hope . best wishes, be strong for everybody who loves you and yourselve
Hi Jack,
I was diagnosed on June 25 of this year, I am 45 years old, married and was on top of the world before this hit me – STILL AM. Like you, It was optic nuritis, lost partial sight in my right eye which by the way, all resulted from a migraine. Anyhow, the diagnosis was a shock! and you grieve, your scared, you cry, you get angry, especially at the people you love, then your reach out to total strangers and a MIRACLE HAPPENS, your not alone, It has been the support of total strangers to get me to that happy place of determination, and positivity. You control the MS by the choices you make, help yourself anyway you can, read, read, but don’t focus on the negative, get support, it is okay. Because Jack, remember you are stronger than you think you are. Remember that please. Despite what you may be feeling. Hey, for a laugh, me and my copaxone arrived yesterday and wer are in a faceoff, give yourself time, and get in control, you call the shots, it will be okay. How do I know, because about 100 + total strangers reached out to me and told me it would be. I know it is hard and it is for anyone who gets this kind of news.
Sorry to hear about your diagnosis, Jack. I showed my first symptoms when I was 17, was diagnosed in my first term of University at the age of 18. Personally, I try not to think about it too much. I’m no different to anyone else… we all have worries at the end of the day. I’ve just finished Uni with a 2:1… nothings impossible. Next year i’m going travelling.. don’t give up on anything. If anything, my diagnosis has given me inspiration, motivation and drive to achieve more. Don’t think of yourself as different, and don’t think that anythings over. We’re still alive and we can still go about our daily life, which is much more than some.
Take care, and good luck! Keep well x
Jack keep the faith. My mom was misdiagnosed for almost 30 years. Finally when she was correctly diagnosed. She has successfully maintained her independence at 69 just really needing a power chair over the past year. Copaxone is our miracle drug. As well as trying to reduce stress so that relapse’s don’t occur frequently. She is fighter and so are you. I just did the ms mudrun this year in honor of my mom. We raised 4k just my team alone. The important thing to remember is that you are not alone. We are all pulling for you and everyone else with this terrible disease.
I saw the headline as well and thought that sounds like my mother who bought me every book under the sun and made me read. I was in nursing school at the time. I had the numbness at 17 off and on until total left eye blindness at 23, now 34 I have lived with MS half my life. Your outlook is great, I have had the article to read for a month or more and just read it. My MS has just cost me a job that I loved, at a place that does not have education nor understanding of the disorder. They felt adding pressure would somehow improve it all. Also with fibromyalgia, I have different medications, and none I can tolerate for MS. I had speech and cognitive issue and fatigue often accused of being under the influence, when I was really under a lot of stress. Thank you for your positive publicity. I have looked up to Montel for years and thankful everyday for all he does. I cherish that man for his devotion and feel you have added to that.
Hi Jack, I also was first diagnosed with optic neuritis. I went right from work to the hosptial and was told I had MS. My husband and I were totally shocked! I was an active 53 year old who didn’t take any medicine at all! I joined a support group and have found so much strength and information from the people there. Keep positive and trust in the Lord. My family is a wonderful help to me….they listen to me vent even though they don’t understand. My prayers are with you.
While I am certainly not happy with anyone being diagnosed with MS perhaps when people that have tremendous exposure to media attention it might bring attention to the disease which could be a good thing out of a bad thing. My spouse has been diagnosed with MS for about three years now it was not until her most recent episode that I started to think perhaps we should focus on diet and exercise. Exercise goes without saying use your body make your nerves work. Diet is ESSENTIAL I have done a lot of research on exotoxins and how they affect people with MS. Read your food labels, stay away from artificial sweeteners like the stuff found in diet pop. While many people say it mimics symptoms of MS it attacks the site of lesions and make them worse (at least that is what hours of research has told me) also stay aware from MSG it has some crazy effects to one’s nervous system and be careful of all the other names it can go by – isolated soy protein, yeast extract, “natural flavors”, autolyzed yeast, pretty much any processed or packaged foods are a danger for having these things. I hope that you can utilize your public image to persuade the food industry to be more honest with the American Public (we are basically being poisoned in the name of profit) or even go so far as to persuade the FDA to be more aggressive with addressing disease and and the dangers food additives cause.
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Keep strong jack you are a challenge guy that strives and is full
xbeck
Of adventure ms is a challenge but life is ment to be lived and ms makes me feel like a adventure every step you go and if we fall we get back up and if we fall again hard we know not to give up but to do what we can newly diagnosed 4 months ago we are not alone and being newly diagnosed is a big challenge getting through the first diagnoses you are a fighter jack like us all and your family are your shield and your lady and your beautifaul child never give up jack just remember everything is gonna be alright
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DON’T THINK! JUST BE IN EVERY MOMENT, THAT’S ALL ANY OF US HAVE…..IF YOU’RE EFFING WIGGING OUT W/ FUTURE THOUGHT………STOP IT! all these other comments are keel too
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Jack
I was pretty interested in you when I read that u also have ms and that yours started with optic neuritis. So I knew we had those things in common and I was interested in ur story. I know what uv gone thru and what ur going thru at this point mine is in remission and I hope ur is also. I have learned today that we have one more thing in commen we share the same birthday. But u take care Of urself. Be strong
Your life isn’t over Jack. My son -inlaw was diagnosed about20 years ago. He has neve rmissed work because of it. He does have a limp when he thinks no one is looking. I called one evening and asked if he had his shot yet and he said it is only three times a week and I said-you mean I have been wasting my sympathy all this time thinking it was every night. He quickly said he still needed my sympathy because next shot went in the eye and after that in the arm pit. I cried so much when I learned he had MS, He finally sat ms down and said I had to shape up . Said he was OK with this —-says he could have something much worse.’
He is such a wonderful person and one of my main heros.He did have a flair up a couple months ago. But he and my daughter and three children and two dogs are all very happy. I pray you will live a full life too Jack. By the way–I love your Mom God Bless-Mikes Mom Joan
Keep going. I have had MS for almost 30 years.
Jack I too have MS and i went three years before my doctor sent me to get an mri, i have partial paralysis in my right leg, severe nerve back pain and am experiencing fatigue and when its hot i have to limit my time outside. I recently received a grant of a cooling vest from MS Foundation and wrote a grant for some swim passes so i can get exercise. I work out every day on stationery bike and find i feel better when i exercise. I got to retire at 53 and looked in a box where i had two novels and journals from the 80′s when i was a forester in the Oregon wilderness , i published them all on smashwords and amazon.com they are called “From the Waters of Coyote Springs”, Felix and Eve and “The Arrangement, that takes place in Eugene Oregon and Catalina Island. I never would have been able to have the time to publish them if it wasn’t for MS, in fact there are many blessings i have because of the MS. Its not so bad, make sure you are on the right meds, esp if you have pain, without pain meds i would lie in bed most of the day. MS is not a death sentence, its all about coping and making adjustments. Keep being who you are and loving everyone in your small circle of friends. and don’t forget to learn how to ask for help dide in eugene oregon
sorry, but i have several sayings that have been true in my life, one is that what doesn’t kill you makes you stronger, that is true physcially and mentally (what they don’t tell you is that it almost kills you). I always walk better after a demanding vaction. I can’t do 4,000 things, but i can still do 5,000. Major on the things you can do, there isn’t enough time to do 9,000 anyway. just because you have to give something up doesn’t mean it is gone forever. I had to give up hunting, but found out about a handicapped hunting group and am back hunting deer and turkey, and the proff is on my wall. a young mn blind from birth got a 10 point dee this year, there are many different ways to do things. i say what ever works, if it takes a walker to go to your childs music program at school, it is worth it, don’t miss out on anything. those are the things that make life worth the effort. i will be 60 next month, and have been diag 18 years. i also say “one way or the other” use your strong mind to figure something out, ask experts, and others with ms. your ms will help your child be compassionate and resourceful, mine was 9 when i was diag. there were times when i couldn”t go to school to help iron out some problem, he handled it, he is now a nucelar chemist in the navy with 3 of the brightest little boys, you could imagine. he also is great with the elderly, an eagle scout, deacon in his church, wonderful husband, very thoughtful to always offer his mom his arm when we are out. life is not for sissies, and it will be a wonderful life life if you don’t weaken. everybody has something (that is another one of my sayings).
Hello Jack…
Don’t worry…Be man…I diagoned MS when I was 42…I use Avonex once a week…I work for 22 years now…Be with your family
Dear Jack,
) but my speech is getting a little bad and my memory. The most important thing i’ve learned is to have a good support system around you. I attend a MS support group at a hospital and even though its mostly older people they all know how i feel. I give myself a shot everyday of Copaxone ( with some memory issues i admit i have forgotten a few times 
) but still i’m growing up and learning how to live with it. Stay strong Jack and keep faith, you’re lucky to have such a great family around you
I also am sad to welcome you to this club. I was diagnosed with MS the week of my birthday, i was 17 years old about to turn 18. It’s a year later and i’m still trying to figure things out. I’ve learned alot but i still have alot to learn. I get tired easily, i try to clean things throughout the day instead of at one time( which actually is easier). I can’t stay out in the sun too long ( which isnt that bad because i dont have to clean the yard
there are so many people who really don’t care .so why would any one care about my problem .I have ms and my son have cp it is really hard for me I have taken care of my son all his life and now I need some one to take care of both of us .I have no ins coverage for my self and money is very short . so it is bad enough to medical problem and no mony so don’t worry about crazy people
Hello jack I’m a young man who just turned 22 on February 12 and I got ms to and had it since I was 19 and ya had ms for four years . I get my ms shots and drink lots of water and green tea jack and father Jesus Christ loves us jack?! Amen jack
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