Hi all, I’ve become very down about my diagnosis and what the future holds for me and am continually googling about the disability and prospects of being in a wheelchair. I know there are treatments that can effectively defer the onset of disability but could you kindly let me know what age you are and how mobile or otherwise you are. I know this post is pointless but I’d like to know anyway. Thank you. .
Yes it’s pointless. It’s irrelevant what age other people are/were when the started to use a wheelchair or any other walking aid. The answer is always going to be ‘too young’.
Plus, for those of us who were diagnosed with RRMS before 2002, there were no DMDs available on the NHS. And the cost of Copaxone and the beta interferons was too much for most people.
Then you need to factor into your random survey those people who had RRMS but were unable to take a DMD even after 2002 due to side effects. Then add in those people who were undiagnosed, just living in ignorance (once upon a time there was no google). And those people with PPMS. And the people for whom no DMD worked.
There’s also the problem of hands, brains, bowels and bladders. Some of us are disabled in ways other than our legs. The EDSS score (which measures disability caused by MS) has been criticised because it is all about legs and walking ability. Personally, my brain is more valuable to me than my legs. And the more I communicate on this site, the more I realise that my brain and my hands are worth more than my walking ability.
If you have become worried and depressed at the thought of how disabled you ‘might’ be at some unspecified time in the future, then try to stop comparing yourself with others. Their experience is basically no guide to what could happen in your future.
If you have relapsing remitting MS, then you should be taking a DMD. If you’re not, then maybe you should be.
If you have progressive MS of whatever variety, then it’s still of no value to compare yourself to others, think about other ways in which you can improve the odds, whether it’s by diet, taking vitamin D and perhaps other vitamins. Try a diet that seems to offer benefits, exercise more or differently.
If you are just feeling depressed because you have been cursed by this devil of a disease, then I’m truly sorry. Think about ways you can distract yourself from worrying about a future that may not happen to you.
I’m sorry if this seems hard hearted and mean to you. The fact is I am a wheelchair user, I am too bloody young to be this bloody unlucky. But we have to make the best of the life we’ve been given. Each of us as individuals.
I wish you many years free from a life spent in a wheelchair.
Sue
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Well done Sue you put it as it is. I to use a wheelchair but indoors I use a rollator and when going out I use my mobility scooter and at my young age of 70 I haven’t given up and not about to any time soon.
Janet
x
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hi i was diagnosed 10 years ago at the age of 50.
if you’re any good at maths you can work out how old i am now.
i still walk but it is so painfully slow now.
the idea of a wheelchair is appealing because i’m sick of always being tired.
a scooter seems a better idea.
i ward off the depression with gin or a harvey wallbanger (just rediscovered this one and i thoroughly recommend it).
as the others have said, it’s pointless to compare.
it’s now gone gin o’clock so cheers!
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Hello Anon, I am 61, diagnosed in 1986 although very, very lucky to have no significant relapses/problems until about 15 years ago after the initial issues. I am just about walking indoors now, but do feel scared of falling outside now and use a stick/poles/rollator. I am thinking about a future with a wheelchair or scooter but find it hard to accept where I am with this. There were no treatments in my day. I was told to go away and get on with life. No ‘google’ then to look MS up on. Library books were hopelessly out of date and even more scary. Sometimes I feel really pathetic and useless, other times I think I am doing really well all things considering. FYI I still work fulltime and (hopefully) will be a Granny in Sept! good luck MS is an enormous challenge, can hardly remember life without it now!
I understand the desire for hard and fast info & certainties, however without wishing to sound like a grumpy old git “life aint like that”
Even if you diluted your hope from certainty to the balance of probability, you are not going to get a valid answer.
The next step down is to ask you medical professional team to make a GUESS based upon their collective previous experience and their knowledge of your specific case but I would bet a substantial amount of cheese (which I value very much) that they would be unlikely to give a useful answer.
I am not trying to be flippant or obnoxious. Whilst you can not switch off the desire for certainty, I recommend that you divert most of your valuable energies into living life to the full and enjoying what you have got now. Tomorrow will still come and you can deal with that days issues then.
Clearly my approach is rubbish if you have big responsibilities like kids or dependants so I hope I have not irritated anybody with my waffle.
Good luck
Mick
Live for today, don’t worry about tomorrow!
I think Mick’s advice is very sound. Life’s cannot be black and white.
We all have to live on a spectrum of greyness of uncertainty.
I’m 63. Sometime I walk, sometimes I use a walking frame, sometimes I use a wheelchair and yesterday went into town on my scooter. It all depends what I want to do at the time. I can’t say how disabled I am because it varies from day to day and according to what I want to achieve.
Best wishes,
Anthony
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Thank you for your words of wisdom. I’m not normally like this, just dwelling on things too much at the moment. I will get past this stage no doubt! I basically have no symptoms of ms but active lesions in my brain and after my last appointment with the neurologist he recommended I start treatment which now has me fearing for the worst about my future. x
I’m sure that your neurologist considers any treatment as prevention being better than cure. Please let us know how you get on. Things are changing all the time. Anthony
It is reasonable to worry and fear about the future, just don’t do it too much or allow it to consume you
Mick
Wow Janet 70 how long have you had ms
Hi anon
You’ve had some good replies already, but thought I’d chip in with my experience, and a comparison.
I was diagnosed 15 years ago. Things were rough at first, it was aggressive with me. I went down but I went back up & things stabilised. I do use a wheelchair, and am very independent.
My older brother, on the other hand, was diagnosed 5 or 6 years ago, and to look at him you’d never know.
I say that to show just how variable life with MS can be. You have no idea what the future holds. Of all the many people with MS I know, only one other uses a chair. Shortly after diagnosis, I had a massive freak out at the idea of ‘ending up’ in a wheelchair. The thought terrified me so much I decided to stop believing in God (not sure why! Thankfully not believing didn’t last long). Turns out I did need a wheelchair. Was my life over? Of course not. I still work, I can drive, I got married, my faith in God is stronger than ever (it’s the thing that’s kept me going), and 4 years ago I was lucky enough to get a scholarship with Flying Scholarships for Disabled People, and went from knowing nothing about flying, to completing 4 solo flights with no-one else in the plane, and all in the space of 4 weeks.
Everything you’re feeling is normal. We’ve all been there. And like you say, you’ll move past this stage. Your emotions may well go through the wringer at times. But whatever your physical abilities, there is life to be had.
Dan
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My wife has Ms and has quite limited mobility and needed to walk with stick and then a crutch,when the mention of Ms came up i tortured myself with the what ifs etc including this wheelchair one,was starting to make me ill and was pointless as i couldn’t control it!
For over a year now my wife has struggled on stubbornly causing herself huge pain as she refused the idea of a wheelchair or scooter and whilst i admire her determination, her mobility hugely restricted what we could do. She has recently been officially diagnosed and has even more recently admitted how much she is struggling and she might like a scooter,well this was music to my ears!
2 weeks ago yesterday i took her to look at some at a local mobility shop and she decided the type she would like,the very small put in car type she felt unsafe on so we settled on the biggest boot type as a compromise.Went away and looked for a cheaper one and found one which was a year old but used once in the colour she liked on ebay so drove 80 miles to get it.
Even before we had left the town we bought it in, it was a revelation to her as we were able to enjoy a lovely stroll along the seafront together and had a lovely couple of hours like we haven’t been able to for 2.5 years.
The next day her 47th birthday i dropped her in Poole with her daughter who has cerebral palsy and is in a power chair and they were able to enjoy shopping for fun without my moaning supervision or much pain! whilst i took the dog kayaking! and then met up for lunch/walk etc.
As it was also our 10th anniversary this week me the wife and the dog went camping for 3 nights and with the help of the scooter she was able to get across the campsite to the beach as well as visiting the village pub for a Shandy.
I love the sea and she loves charity shops and over these few days we have visited Lyme regis(very steep high st)lovely harbour and sea front,Axminster and Sidmouth. Lovely seaside walks and she has visited every charity shop in all these towns which she loves,Our poor old dog who is 15 has even taken to jumping on the scooter when she needs a rest!
Been a crazy busy 8 days but my wife has not been fatigued to the same degree she has been previously,she has been tired but probably not much more than me and the dog?She certainly hasn’t been in as much pain and we have done a hundred times more than we could!She wishes she did it ages ago.
My advise would be not to not torture yourself with worry about possible disability you don’t yet have, the stress might help bring it on? (easier said than done i know) but get on and live your life as best you can.If and when the time comes reassess and get whatever equipment you need to get the most out of life again in a slightly different way.
All the best
Ollie
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Nicely put Ollie, reading your post reminded me of how I multiplied everyone’s problems when my mobility changed by fighting too hard and not using tools and facilities to make getting around easier. I found it a massive issue to use a stick then zimmer then rollator or wheelchair or scooter, it was about halfway through this extended process that I got it through my thick skull that my life was actually getting better again once i got over “my issue” with each tool/aid.
I can now spend more good time with family and friends because I have a range of tools to help.
I really hope this thread has been useful.
Mick
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ive had MS for at least 16 years maybe 26 as my new consultant said he could see possible symptoms back then. my reason to post is this. at my diagnosis i was told i would need a wheel chair after 10 years.im now 50 and just stopped kickboxing . i did a charity boxing match a couple of years ago . i forgot to mention my illness and got matched with an ex soldier. (i wish i had mentioned it ) he was a very hard puncher !!! … my reason to post is NO-ONE can tell you when and if you will ever need a chair. every ones MS is different. so please dont worry and think whens it going to be needed. my MS journey is personal to me maybe ive been lucky . but there is no guarantee we will ever need a chair. everyones MS is different