I was out driving today looking for yard sales, craft shops, antiques, etc. and I ended up in a very rural area at a little consignment shop. While I'm in there a woman comes in and there is a man behind her. I don't notice anything until this woman 'stage whispers' to the woman behind the counter that this guy has ms and his wife has thrown him out of the house. She is trying to help him and he needs to sell his few items so he can get some money. I'm trying not to be obvious but I am torn between bolting from the store (and the reality) and watching this guy so I can see how bad off he is. He seems to be ok on his feet but his movements are jerky and he doesn't speak very well, he comes off like he's mentally handicapped and I am overwhelmed with feeling badly for him and horrified of what can happen.
Does anybody have any good news stories, something like they've had ms for 20 years and are doing ok, maybe a cane, but getting along fine. Frankly I could use the pick me up because I have been pretty down since I saw that. I felt so bad for this man and I was so aware of that woman 'stage whispering' this guy's business and the pity dripping from her voice. Bad, bad, bad.
Any good news stories? 20+ years and doing ok?
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scoobyjude
- Family Elder
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- Location: suburb of Chicago, IL USA
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Mary, I do know of a family friend who has had MS for 25 years and while I don't live in her body, I would say she's doing extremely well. She has had to get a stronger prescription in her eyeglasses and has some back pain and occasionally problems with her fingers. Otherwise, she leads a very normal life. I know that she has tried DMDs but has never stayed on one for long. Her worst problem has been depression.
I look at her and feel hopeful but I know she is not the norm. I just pray that before I have had MS for 25 years-they have found a cure!
I look at her and feel hopeful but I know she is not the norm. I just pray that before I have had MS for 25 years-they have found a cure!
Eric Small, 74 years old, born and raised on Catalina Island in Southern California, has been practicing yoga regularly since 1951. That’s more than a decade since B.K.S. Iyengar‘s Light on Yoga, now considered a classic, was first published. Small demonstrates what we can all look forward to with age, the wisdom accumulated during a lifetime of yoga and the sophistication and refinement that come with maturity. He reveals possibilities of what we might be able to achieve through a yoga practice. Small’s yoga story is also a half-century’s worth of our own neighborhood yoga history.
Unlike most of us wandering into our first yoga class, Small first embraced yoga as a way to manage the symptoms of Multiple Sclerosis, which included visual and motor deficiency, speech difficulty and bad balance. He even briefly became dependant on a wheelchair. He had made “no progress with the traditional medical modality” and instead suffered “bad side effects such as nausea and fatigue.” Looking back, he reminisces about his “fantasy to use yoga to manage symptoms and continue with life.” What was once mere fantasy is now his reality. Back in the 1950’s yoga was much harder to come by. Small often had to drive from Los Angeles as far as Santa Barbara to attend a single class.
Linky
Hi Mary,
What a great thread. Hope you get more responses soon.
I just wanted to tell you that when i went to see my ms specialist and i was desperately asking for anything positive about this disease, she told me about a lady that used to work full time in the ms society who had 7 children and she was walking around fine...only needed to use a cane in her 70's.
Remeber too that a lot pf people with very mild ms probably don't come to these forums as they don't need to as they're probably living normal lives.
Elly
What a great thread. Hope you get more responses soon.
I just wanted to tell you that when i went to see my ms specialist and i was desperately asking for anything positive about this disease, she told me about a lady that used to work full time in the ms society who had 7 children and she was walking around fine...only needed to use a cane in her 70's.
Remeber too that a lot pf people with very mild ms probably don't come to these forums as they don't need to as they're probably living normal lives.
Elly
Get some great inspiration right here as Paul Stock shares his story about becoming a competitive bodybuilder while struggling with multiple sclerosis.
--------------------------------------------------------------------------------
By: Clayton South
Let me ask you this question: If you suddenly discovered that you had only six months to live, how would you change your life?
What would you do? What would you do differently? Would you stay living in the same place? Would you stay in the same relationships? Would you become physically active?
What Would You Do Differently?
If you've ever had the misfortune to look down the barrel of a loaded gun, you know what it means to look death in the eye. If you escaped uninjured, consider yourself lucky because others haven't been as fortunate.
But, what would you do if you had to look down the barrel of that gun every time you looked in the mirror? Would you develop nerves of steel, or would you tire and give in to fear?
If you've been around the iron game for a while, then Paul Stock is a bodybuilder whose name you probably know, and if you don't, you should.
The Canadian bodybuilder who hails from NewMarket, Ontario, Canada has become an inspiration and bodybuilding hero to tens of thousands of athletes across North America and an example to all people everywhere of what determination and commitment can accomplish.
You see, Paul has multiple sclerosis - a serious and often fatal autoimmune disease that disrupts nerve signals and muscle function; a disease for which there is no known cure.
Multiple Sclerosis
Multiple sclerosis (MS) was first described in Holland by a 14th century physician. It is a disease in which the nerves of the central nervous system (brain and spinal cord) degenerate.
Myelin, which provides a covering or insulation for nerves, improves the conduction of impulses along the nerves and also is important for maintaining the health of the nerves. In MS, inflammation causes the myelin to degenerate and eventually disappear. Consequently, the electrical impulses that travel along the nerves decelerate.
Late in the disease, the nerves themselves are damaged. As more and more nerves are affected, a patient experiences a progressive interference with functions that are controlled by the nervous system such as vision, speech, walking, writing, and memory.
Despite this challenge, Paul competes, trains, and continues to inspire every one he meets. He continues to push his boundaries while inspiring and encouraging others to do the same. He is a natural bodybuilder doing what natural bodybuilders do best - building and maintaining his health. He is, simply, bent on overcoming the odds.
I sat down with Paul just as he was hot off a busy competition schedule.
Here is the full article, pretty good stuff.
http://www.bodybuilding.com/fun/south116.htm
Had ms for 28 yrs,
8.5 EDSS
SPMS, 54 yrs old
Taking it day by day
8.5 EDSS
SPMS, 54 yrs old
Taking it day by day
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TwistedHelix
- Family Elder
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- Location: Northamptonshire, England.
Hello Mary,
That must have been a very traumatic experience for you: it reminded me of a time just after I was newly diagnosed and I went past fundraising stalls in town, one of which was run by a locally well known woman with MS. She was very vocal and active, always chucking herself out of planes and being carried up Mount Everest in her wheelchair, but her speech was severely impaired and I just COULDN'T force myself to approach her. Yet, at the same time, I wanted to look at her with a mixture of curiosity and fear.
I didn't know what to feel: was I supposed to admire her; be grateful to her for showing the world you can still live a life with a wheelchair; be angry and afraid that she was confronting me with my possible future; be guilty for feeling uncomfortable with her disability? Or should I just pretend it was nothing to do with me and carry on shopping?
In the end I assuaged my guilt with a very quick chat and donation, but I just wanted to point out that we can all have those feelings when, just when we think we're comfortable " living with MS", something jolts us out of our comfort zone.
Try and take some hope from the fact that, while there are extremes of any condition, the vast majority of people with MS will end up somewhere in the middle: neither totally benign nor extremely severe.
Elly made an excellent point that there are many, many people who never have need of a forum like this, so they are in a sense invisible – you never notice those who are mildly affected, only those whose symptoms are obvious, and that can slant your perceptions of MS.
The woman who " stage whispered" in the shop sounds pretty awful, but you said you hadn't noticed the man until she spoke – could it be that the way she spoke about him, and the shock of realizing you have the same condition, made it seem much worse?
As I've said here before, statistically the chances are that you won't be at the extreme ends of the spectrum, even without medication and lifestyle changes. The sheer volume of research, (even though we can criticise it for being slow and heading off in the wrong direction), combined with that, gives cause for great hope.
That must have been a very traumatic experience for you: it reminded me of a time just after I was newly diagnosed and I went past fundraising stalls in town, one of which was run by a locally well known woman with MS. She was very vocal and active, always chucking herself out of planes and being carried up Mount Everest in her wheelchair, but her speech was severely impaired and I just COULDN'T force myself to approach her. Yet, at the same time, I wanted to look at her with a mixture of curiosity and fear.
I didn't know what to feel: was I supposed to admire her; be grateful to her for showing the world you can still live a life with a wheelchair; be angry and afraid that she was confronting me with my possible future; be guilty for feeling uncomfortable with her disability? Or should I just pretend it was nothing to do with me and carry on shopping?
In the end I assuaged my guilt with a very quick chat and donation, but I just wanted to point out that we can all have those feelings when, just when we think we're comfortable " living with MS", something jolts us out of our comfort zone.
Try and take some hope from the fact that, while there are extremes of any condition, the vast majority of people with MS will end up somewhere in the middle: neither totally benign nor extremely severe.
Elly made an excellent point that there are many, many people who never have need of a forum like this, so they are in a sense invisible – you never notice those who are mildly affected, only those whose symptoms are obvious, and that can slant your perceptions of MS.
The woman who " stage whispered" in the shop sounds pretty awful, but you said you hadn't noticed the man until she spoke – could it be that the way she spoke about him, and the shock of realizing you have the same condition, made it seem much worse?
As I've said here before, statistically the chances are that you won't be at the extreme ends of the spectrum, even without medication and lifestyle changes. The sheer volume of research, (even though we can criticise it for being slow and heading off in the wrong direction), combined with that, gives cause for great hope.
Dom
Hi Mary,
I don't want to be the cause of your postings coming back to haunt you, but I read this from your third post
I'm glad you started this thread. We could all stand to hear some good news and there is good news to be had, but please don't let the diagnosis of MS alone ruin your life..... if that's what is still going on and if that is what led to your starting this thread.
Trust me, good things are on the way and the future isn't going to look like the past.
Bob
I don't want to be the cause of your postings coming back to haunt you, but I read this from your third post
and I hope the time since that earlier post has served to ease your mind a little.Mary wrote:In fact, I'd like not to focus on ms at all, but it consumes me, I think about it constantly, but hopefully time will help with that.
I'm glad you started this thread. We could all stand to hear some good news and there is good news to be had, but please don't let the diagnosis of MS alone ruin your life..... if that's what is still going on and if that is what led to your starting this thread.
Trust me, good things are on the way and the future isn't going to look like the past.
Bob
Don't jump on her robbie, jump on me. I don't even know if she's depressed, I just made an assumption.
Mary was diagnosed fairly recently and has some time on her side and there is currently a lot more reason than in the past for someone with early MS to be optimistic.
Can I or anyone else make any promises until you can go out and get a prescription for some of the things that are currently show promise? Heck no, but there is reason for someone in her situation to be optimistic that something that will stop the disease process will show up before immobility does.
I'm surprised because I would think if anyone was going to agree with what I said it would be you.
If you had it to do over again wouldn't you have enjoyed and appreciated every minute after your diagnosis and minimal disability rather than let the thought of having MS ruin even that time?
Bob
Mary was diagnosed fairly recently and has some time on her side and there is currently a lot more reason than in the past for someone with early MS to be optimistic.
Can I or anyone else make any promises until you can go out and get a prescription for some of the things that are currently show promise? Heck no, but there is reason for someone in her situation to be optimistic that something that will stop the disease process will show up before immobility does.
I'm surprised because I would think if anyone was going to agree with what I said it would be you.
If you had it to do over again wouldn't you have enjoyed and appreciated every minute after your diagnosis and minimal disability rather than let the thought of having MS ruin even that time?
Bob
I just re read what i wrote and i forgot to mention that this lady i'm referring to had most of her children after her diagnosis, of course she was not on any dmd's and she worked full-time until she retired at 65.
I'm planning to be just like this lady 
I just choose to believe that my life will follow a similar pattern.
I refuse to dwell on the worst case scenario because i think it's the quickest way of getting there ( for me anyway).
Elly
I'm planning to be just like this lady
I just choose to believe that my life will follow a similar pattern.
I refuse to dwell on the worst case scenario because i think it's the quickest way of getting there ( for me anyway).
Elly
This is such a great site, so much support, wisdom and feedback. Thanks everyone, I appreciate all the responses and it is good to read about people who are getting along fine. Good point as well that those who are least affected are probably not using this forum. It was a sad thing to see and realize, what this man was going through. First his body betrayed him and then the person he looked to the most for support and love and understanding (although I'm not judging the woman, this is hard on everyone and I don't know them or their story). I am still quite consumed by my diagnosis, I go back and forth between consumption and denial but there is never a day that I don't think about it a lot.
Thanks again.
Thanks again.
Mary,
I agree. This site really is a great site, in so many ways.
I can't speak for everyone, but I also feel that not a day goes by where this diagnosis doesn't consume me for at least a moment, and right now I am well off... So perhaps other don't visit this site because they just don't know?
Brock
I agree. This site really is a great site, in so many ways.
I can't speak for everyone, but I also feel that not a day goes by where this diagnosis doesn't consume me for at least a moment, and right now I am well off... So perhaps other don't visit this site because they just don't know?
Brock
Mary,
Here is an article I saw a few months ago about Richard Cohen who has had MS for over 30 years and seems to be doing OK. His father with MS is 87.
http://www.nationalmssociety.org/site/P ... chardcohen
When I was dx my mother-in-law told me that her friend has MS (age 70) and I would not know it if I saw her. But on the other hand my MS nurse advised me not to go to the local MS club as, I imagine, there would be sufferers with severe disability!
The fly in the ointment is treatment - perhaps future treatments will halt the progression / repair some of the damage.
In the meantime, I take the same view I adopted following the London underground bombings two years ago. I didn't stop using the underground as if its going to happen to you, its going to happen.
Ian
Here is an article I saw a few months ago about Richard Cohen who has had MS for over 30 years and seems to be doing OK. His father with MS is 87.
http://www.nationalmssociety.org/site/P ... chardcohen
When I was dx my mother-in-law told me that her friend has MS (age 70) and I would not know it if I saw her. But on the other hand my MS nurse advised me not to go to the local MS club as, I imagine, there would be sufferers with severe disability!
The fly in the ointment is treatment - perhaps future treatments will halt the progression / repair some of the damage.
In the meantime, I take the same view I adopted following the London underground bombings two years ago. I didn't stop using the underground as if its going to happen to you, its going to happen.
Ian
hi Mary,
People's course differ but I got sick in 91. I still walk, but use a cane when out so not to look drunk. I do everything I want to pretty much. One thing I can say is that for me it took about 10 years AFTER DIAGNOSIS to come to terms with it and be OK to a certain degree. I stopped worrying about the next attack, stopped imagining that everything I did caused worsening, and stopped trying every darned cuckoo thing I heard of. One day you just realize I have this and I have to live with it; it's not my food, not my fat intake, not my anything else lifestyle wise that caused it although you can do better if you eat a low fat diet and in general are taking a healthy lifestyle and of course be informed about your treatment options.
that having been said I still look forward to the day that research clarifies what exactly MS is and gets going down THAT path, whatever it is. My personal theory is a germ so I use antibiotics now.
I think it is really key to find things you can do that are new, fun, and still accessible. I kayak with support on the right hand (and my husband who gets the kayak out), take photographs of lovely flowers on Mt Rainier where I used to hike, go to the beach and watch sunsets, learned tole painting, walk with hiking poles on short hikes (places hurricane ridge in washington where the car gets close to paved paths-I can go 1/4 mile easily), sew quilts, enjoy gourmet food and I am the gramma who will sit with a bubble wand or a book in her hand for an hour at a time and am much beloved for it. Life is beautiful.
marie
People's course differ but I got sick in 91. I still walk, but use a cane when out so not to look drunk. I do everything I want to pretty much. One thing I can say is that for me it took about 10 years AFTER DIAGNOSIS to come to terms with it and be OK to a certain degree. I stopped worrying about the next attack, stopped imagining that everything I did caused worsening, and stopped trying every darned cuckoo thing I heard of. One day you just realize I have this and I have to live with it; it's not my food, not my fat intake, not my anything else lifestyle wise that caused it although you can do better if you eat a low fat diet and in general are taking a healthy lifestyle and of course be informed about your treatment options.
that having been said I still look forward to the day that research clarifies what exactly MS is and gets going down THAT path, whatever it is. My personal theory is a germ so I use antibiotics now.
I think it is really key to find things you can do that are new, fun, and still accessible. I kayak with support on the right hand (and my husband who gets the kayak out), take photographs of lovely flowers on Mt Rainier where I used to hike, go to the beach and watch sunsets, learned tole painting, walk with hiking poles on short hikes (places hurricane ridge in washington where the car gets close to paved paths-I can go 1/4 mile easily), sew quilts, enjoy gourmet food and I am the gramma who will sit with a bubble wand or a book in her hand for an hour at a time and am much beloved for it. Life is beautiful.
marie
Hi Mary,
I've had MS since 1978, possibly since 1961, and I'm not nearly as badly off physically as the person you saw.
It's really rare for somebody to be so badly disabled by MS--though it does happen. I've known a few people in that situation.
Most people have to make some adjustments in their lives, maybe even stop working and be considered disabled, but they can still talk and eat and enjoy life.
It may be more difficult for somebody who is athletic and very physically active to adjust to the limitations imposed by MS. I've always enjoyed quiet activities myself, and the only sports I used to take part in were bowling and swimming.
I use a wheelchair to sit in all of the time because sitting in other types of chairs is too uncomfortable for me, but in a pinch I can sit in a regular chair--for a few minutes anyway. I also use the wheelchair for distances and for situations where I don't know how long the wait will be or what I'm in for.
But I can also walk up to a mile on a good day, and on a typical day I walk around my apartment and the building I live in--without any walking aids.
I should mention that my apartment is small (about 450 square feet in all) and in a shady location that is almost always cool in summer. I would not be doing so well in a warmer place or in a larger one.
I've had to make adjustments--lots of them, and most involved giving up on activities I used to do (knitting, playing the piano, even most cooking). I still cook my own meals and do my own shopping.
I've never had a car, and so driving isn't an issue.
I have a helper 3 times a week, for 3 hours each time, who can do errands for me if I'm not up to it, but usually she takes me grocery shopping and to medical appointments.
For other transportation there is a paratransit van that is available at low cost in my town. It has a wheelchair lift, and I've used it for over 25 years.
I don't have much money, living on Social Security disability benefits, which aren't generous if you've been a mom for 10 years of your working life. I'm fairly used to not having money, and I live in federally subsidized rental housing for the very low income disabled/elderly. My rent is 30 percent of my income.
I'm 67 years old, a woman living alone (but with a friendly cat), and I enjoy watching movies on DVDs, puttering with my plants, reading (Talking Books), and listening to music. I also have done a lot of crocheting, needlepoint, and counted cross-stitch, as well as quilting.
I live right across from a splendid park where I can take strolls.
This may not sound like a life you'd enjoy, and I admit that there's very little social life and no travel, but I don't feel that MS has made life unbearable.
I've had MS since 1978, possibly since 1961, and I'm not nearly as badly off physically as the person you saw.
It's really rare for somebody to be so badly disabled by MS--though it does happen. I've known a few people in that situation.
Most people have to make some adjustments in their lives, maybe even stop working and be considered disabled, but they can still talk and eat and enjoy life.
It may be more difficult for somebody who is athletic and very physically active to adjust to the limitations imposed by MS. I've always enjoyed quiet activities myself, and the only sports I used to take part in were bowling and swimming.
I use a wheelchair to sit in all of the time because sitting in other types of chairs is too uncomfortable for me, but in a pinch I can sit in a regular chair--for a few minutes anyway. I also use the wheelchair for distances and for situations where I don't know how long the wait will be or what I'm in for.
But I can also walk up to a mile on a good day, and on a typical day I walk around my apartment and the building I live in--without any walking aids.
I should mention that my apartment is small (about 450 square feet in all) and in a shady location that is almost always cool in summer. I would not be doing so well in a warmer place or in a larger one.
I've had to make adjustments--lots of them, and most involved giving up on activities I used to do (knitting, playing the piano, even most cooking). I still cook my own meals and do my own shopping.
I've never had a car, and so driving isn't an issue.
I have a helper 3 times a week, for 3 hours each time, who can do errands for me if I'm not up to it, but usually she takes me grocery shopping and to medical appointments.
For other transportation there is a paratransit van that is available at low cost in my town. It has a wheelchair lift, and I've used it for over 25 years.
I don't have much money, living on Social Security disability benefits, which aren't generous if you've been a mom for 10 years of your working life. I'm fairly used to not having money, and I live in federally subsidized rental housing for the very low income disabled/elderly. My rent is 30 percent of my income.
I'm 67 years old, a woman living alone (but with a friendly cat), and I enjoy watching movies on DVDs, puttering with my plants, reading (Talking Books), and listening to music. I also have done a lot of crocheting, needlepoint, and counted cross-stitch, as well as quilting.
I live right across from a splendid park where I can take strolls.
This may not sound like a life you'd enjoy, and I admit that there's very little social life and no travel, but I don't feel that MS has made life unbearable.