I was reading on a website about the top 10 myths of ms. One of them is that the majority of people will never need a wheel chair or assisted advise in their lifetime with ms? Would you buy that? I hear of quite a few people on here that haven’t even been diagnosed for that long who are using one already when out and about etc.
hi anon
i’ve had ms for 5 years.
i was determined to avoid a wheelchair and used all the powers of my stubborn streak.
however now i’m considering getting a wheelie because i want to get back into working in schools.
i can’t get down on the floor and back up again without help so wheelchair would make me at a good height to work with children.
my ms nurse wants me to look at scooters but the wheelie is the best height for my purposes.
so i suppose it comes down to whether or not you can manage without a walking aid.
would you gain anything from using one?
everything seems to be individual with ms.
it sounds from your post that you are worried about needing an aid.
carole x
Hi Anon, I do use a wheelchair when I go shopping as I can’t go very far and I would have such negative shopping experience without one. Otherwise, I walk (with difficulty). A wheelchair can be a positive thing and give you back some of the experiences you have lost! Teresa xx
Anon,
I was told a similar think by my neuro when I was first had symptoms in 2006. Fives years later I was in a wheelchair so it was small comfort.
-Adrian
Are you saying it’s a myth that most people will need a wheelchair, or that the majority won’t?
I’d say the majority won’t.
Don’t forget that people on support forums aren’t a representative sample. People tend to seek support when there’s been a problem - e.g. needing a wheelchair. People mostly don’t post to say: “Nothing really bad has happened, and I’m getting on fine”. Not because there’s anything wrong with saying it, but it’s human nature, isn’t it? Being fine isn’t news, according to most people, so you’re less likely to get stories about it.
As for “assistive device”, if that’s what you mean, I don’t know if that would include something as simple as a stick. A lot of people will use a stick in their lifetime - even those without MS. I would think far more MSers will need a stick than a wheelchair, but some won’t need either - or at least, not 'til late in life. My great aunt lived to 87 with MS (I only found this out after I was diagnosed). As far as anyone in the family can tell, she didn’t use a wheelchair until the last few months of her life. At 87, there are probably more people in wheelchairs for other reasons, than because of MS. Of course, I’d prefer not to need a wheelchair at all, but if I thought I wouldn’t need one 'til 87, I’d be more than happy with that! It’s more than some supposedly healthy people (i.e. non-MS) people get.
Tina
x
Hi Anon,
I am at the opposite end of the MS spectrum - 12 year and no wheelchair required although I did buy a stick for use on escalators in the London Underground. But I have only used it once - a 2.5 hour traffic jam one day killed my knees.
I think its a personal thing - some people will use a wheelchair cause it makes life easier as Teresa has said and some (like me) are stubborn sods and will defy aids even when we shouldn’t. I can’t help but wonder if that statement came from a time when wheelchairs weren’t as readily availble.
JBK xx
Not everyone with ms has problems with their legs i never have touch wood
hiya
its impossible to say for each person.i had a huge relapse 18 months ago from which i have never recovered so went from doing aerobics, driving, walking unaided to using a powerchair and having carers attend my home to assist me with basic daily living. so i would have thought that i could/would have got away with not using walking aids but all that changed dramatically within a week!
expect the unexpected! thats all i can say re this ms malarkey.
ellie
I used a stick for about 5 months last year following two relapses affecting my legs but am using it less and less as I slowly recover the use of my legs. I suspect there are many people who use aids intermittently when they need them so they are probably included in the statistics but it doesn’t mean they don’t have some mobility, it just means they need a little help to allow them to enjoy life to the full. The problem with statistics is that you don’t get the full picture …
Tracey x
What about the secondary progressive stage that the majority of us with relapsing remitting will get? Is the secondary progressive stage the stage where walking a affected? For example if you get ms when your quite young and reach the secondary progressive stage when your 35 for example can you really imagine not using a wheelchair or aid for the rest of your life from the age of 35 for example?
As long as I still have my mental faculties and a sense of humour, I will have quality of life. I have been through stages where my mobility has been greatly impaired and that didn’t upset me nearly as much as not being able to communicate.
Tracey x
I hope not that really scares me i was told i have the ms they found on mri was mild in my brain so holding on to hope x
A wheelchair is just a vehicle. Could you imagine not using a car because it might expose your inability to walk? I look at my wheelchair in exactly that way. Without it I would be stuck at home too afraid (or weary) to tackle going out on my own.
With my chair I get out and about almost as well as a healthy person. Everybody knows me locally and I get into far more conversations than I would if I was walking. I go where I want and do what I want (within the limitations of accessibility of course) Please don’t be afraid of a wheelchair – it’s just a tool not a death knell.
Jane
Hi
My diagnosis was SPMS. When I was diagnosed the neuro said 20% of people with MS will go on to need a wheelchair, that means that 4 in 5 people with MS won’t. Seven years after diagnosis I still do not need one, what the future holds nobody can say.
MS is unpredictable and affects everyone differently.
Good Luck on youur journey with MS.
Anne.
Hi Anon,
This is off the National MS Society’s website (like the Multiple Sclerosis Society, but the US version)
Does MS always cause paralysis?
No. Moreover, the majority of people with MS do not become severely disabled. Two-thirds of people who have MS remain able to walk, though many will need an aid, such as a cane or crutches, and some will use a scooter or wheelchair because of fatigue, weakness, balance problems, or to assist with conserving energy.
So yes, probably the majority of people with MS will never NEED a wheelchair. But it may be that a slightly higher percentage take to one it later years for sheer convenience and to make life easier.
I hope this helps a little, take care,
Forest x
i just read your post with interest, thanks. but then i wondered what the other myths there might be, so googled it, which came up with lots of US centric posts so i tagged ‘UK’ on the end of the google search, this brought up a MS society site as the first suggestion. i thought i’d see what that was about… and was sent back to your post, which gave me a laugh.
one myth a doctor threw at me a few years ago was when she said ‘oh no, pain isn’t a symptom of MS’, aaaargh! this little gem amused the hell out of my neurologist when i saw him, though.
wendy x
Thanks guys for all your comments and thoughts, you’ve answered my concerns worries and questions :0) xxx