This was a web-based study to look at the impact of neurological impairments from the perspectives of people with MS and their “care partners” [“I don’t like this word”].
The study included 1011 people with MS and 317 care partners.
- Among MS’ers, 41% reported having difficulty walking, including 13% with inability to walk at least twice a week.
- Of those with difficulty walking, 70% said it was the most challenging aspect of having MS.
- Of those with inability to walk at least twice a week, 74% said it disrupted their daily lives.
- Only 34% of people with MS with difficulty walking were employed.
- Communication between people with MS and neurologists regarding difficulty walking was suboptimal; 39% of all people with MS said they never or rarely discussed it with their doctor.
- A significant percentages of all care partners experienced reduced quality of life and socioeconomic status in association with caring for a person with MS.
Conclusions: Difficulty walking is a common impairment in people with MS, with adverse effects on the quality of life of MS’ers and their care partners.
“This study was sponsored by Acorda Therapeutics, the company that markets Fampridine in the US.”
“The study may be biased towards more disabled MS’ers.”
“These figures are a startling reminder of how disabling MS is and how disconnected neurologists are from these problems.”
CoI: Multiple
I’m so glad you blogged on this matter.Walking impairment was the first problem related to my MS that I noticed and it seems to have continued in that direction. I always told my neurologist that if he could cure my walking issues then he’d practically cure my MS. I know I’m being naive and that MS probably affects me in more ways than just walking, but I will say that that particular aspect of the disease is the most difficult and horrendous element to deal with.I know that Fampridine and, maybe, Nerispridine are thought to improve walking function in PwMS, but both drugs seem a world away right now. I often think to myself that walking was the easiest thing to do at one time and now it seems so overwhelmingly complicated. Not fair.
My former neurologist was really unsympathetic when it came to talking about walking issues. He bluntly told me there was nothing he can do about it. Even my new neurologist is hopeless, making sure he never even asks about it.I hope that Fampridine does work. Even a small difference will be a welcome relief. I’ve never heard of Nerispridine but after a quick Google search it pretty much seems like the same drug. To be honest I think the true panacea will be nuero-regenerative stem cell treatments that restore myelin and rectify damage caused to axons. I just hope that such treatments get to us soon because it’s not as if time is on our sides.
Totally agree with these posts – it used to be so easy but it isn't any more. As well as medications, I guess there is the world of orthotics and robotics (one day in the future). I find it very frustrating and debilitating. In one blog you mentioned that MS seems to happen to physically active people (that is certainly true of me) – is that the case or is it what you've observed but not measured?
Me too! I was totally physically active and I got MS. I don’t smoke or drink and have a good diet (I even recycle if that makes any difference!) yet I still got this blasted disease.The funny thing is you can convince yourself that you’re the only one with MS who can’t walk properly but according to statistics nearly half of all MS sufferers have walking difficulties. It is so frustrating. I think that if I could walk without aids then that will be so brilliant. It’d be like old times again. I’d settle for a lifetime of fatigue, nystagmus and foggy-head if they can just clinch the walking problem.
'MS seems to happen to physically active people' is very true of my daughter. Pre-MS she was one of the children who is always up for anything. I really thought MS would not affect her much since she started with such high energy levels.
Is there any link at all between disease progression and how physically active a patient is? We all know how exercise is good for the body in general but does it help to slow down disease progression at all? Or are the two just totally unrelated?
Re: "In one blog you mentioned that MS seems to happen to physically active people (that is certainly true of me) – is that the case or is it what you've observed but not measured?"What I meant is that most people with MS are young (average age of onset 28 to 30 years of age) and have no other disease. I don't think MS attacks people who exercise more than people who don't. Please don't forget that smoking increases your risk of getting MS by 50%.
Re: "Is there any link at all between disease progression and how physically active a patient is? We all know how exercise is good for the body in general but does it help to slow down disease progression at all? Or are the two just totally unrelated?"This question is difficult. I am not sure if there has been a large enough study to assess whether or not regular exercise slows down disease progression. There are analyses in the literature that state that people who exercise regularly do better than people who don't; the reasons for this are not clear and could be a tautology. In other words people who are less disabled are more likely to exercise than people who are disabled. More on this later.
I hate the fact no one can sort out walking issues to do with progressive MS. I feel like consultants treat MS sufferers like children. Some they like and are interested in helping, others are told to grow up and be brave about their grim fate.