Does anyone know how many people / percentage with MS get to a ripe old age with only a minor disability and what percentage end up in a wheelchair before say 65 years old?
This is from the MS trust site.
You will end up in a wheelchair
For the vast majority of people with MS, this will not be the case. Getting rapidly worse is rare and most people with MS will never need to use a wheelchair on a regular basis.
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Edingirl,
I guess that this sort of data is gathered and might be available somewhere, however I am not sure that I would make decisions based upon it. In my opinion it is all a random balance of possibilities. If the professionals were able to offer a credible prognosis to help us plan I reckon they would. (either that or some sharp commercial player would be selling the info)
As a technician I am quite happy to use the stats related to drug trials to help me make a decision but I am still aware that there are not too many certainties in life.
I am a big fan of trying to deal with todays issue and only think about the longer term stuff that I can influence.
Sorry if this is not helpful.
Mick
PS one thing my MS has taught me is to enjoy stuff while I can. Things can change in a heartbeat and that goes for everyone.
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Iād back up what Mogace and Whammel said above; no way of telling, but unlikely that youāll need a wheelchair for many years, if at all! The uncertainty of it all is a bummer, but you just have to learn to live with it. Thatās what Iām doing still, and will probably carry on doing forever after! One day at a timeā¦I use a walking stick occasionally, but Iām still on my own two feet for the majority of the time; the stick is just for confidence really.
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I have seen it reported that: : āOnly about one-third of people with MS use wheelchairs 20 years after diagnosis.ā
So what about those that have had MS for over 20 years like me?
Iām 56yrs a wheelchair/powerchair users SPMS or Advanced MS, as some like to call it.
I would say a more accurate survey is needed for those 50+
Fay
PS. So much for 8 years of DMD.
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I donāt know where the statistics are supposed to come from? No one has ever asked me about my use of mobility aids (except the DWP!) so I canāt imagine that any stats would have any real value.
Added to which, are you talking about occasional use outside of the house, regular use outside, occasional use indoors or full time use in and out of doors?
And as Fay said, itās going to depend a lot on age. Aged over 50 and having had MS for 20+ years, its unsurprising that I use a wheelchair since Iāve had very little in the way of DMDs. But someone diagnosed today and given a good DMD, plus access to MS nurses, physiotherapy and OTs, they are more likely to find that they donāt nee a wheelchair in 20 years. Things have moved on. Maybe not far enough, but the prognosis is much better today than it was 20 years ago. And as for 40 years ago!
Sue
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Can I reply to your query from a slightly different angle please?
Speaking as someone who has needed a wheelchair for around 20 years, both part and full time, I was wrongly diagnosed with PPMS for 10 years. My diagnosis since has not changed my lack of mobility BUTā¦
My wheels are my legs, my friend, my mobility. No-one would wish to be like this
BUTā¦
Needing a wheelchair is not ideal, but it certainly isnāt the end of the world.
If you need one, youāll find that it enables you to take part in life, rather than be stuck indoors and missing out on life. Or stuck in bed 24/7.
Lots of places are now wheelchair accessible and the vast majority of users will tell you they still lead a valuable and enjoyable life.
What Iām saying is donāt let the thought of needing a wheelchair make you give up on life!
Pollsx
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Itās been a while since I last visited but after 15 years, diagnosed 31, wheelchair user at 35, Iāve moved on to even greener pastures and need advice. I was able to weight bear until the beginning of this year and now my transfer to shower and especially the toilet are hit and miss but mostly miss. OT has ordered a shower chair to minimise breaking my ankles doing a pivot from power wheelchair to shower chair, but we arenāt getting anywhere with the toilet as I donāt have the power to use a dolphin slide board.
im waiting to learn isc ( could I cath straight into loo from chair and how long does it take to learn- I shudder at the embarrassment) but Iām generally feeling miserable. Iām a writer and my hand has finally given up the ghost (dragon voice doesnāt quite cut it). If ms could ever come tumbling down in one go this seems to be it. My partner has to do most things but not someone I can talk to- āit could be worseā or seems peeved at times when I need repeated help.
i donāt know how it goes from here. If you canāt stand how do you do your bowel routine? As it is my social life has just ended as I canāt now get off a public toilet.
how do we manage in our own homes let alone in the world? How do we stay independent in our day-today functioning?
Any thoughts?
thank you
xx
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Years ago, when I was first diagnosed, I read a statistic that 80% of people with MS donāt end up in a wheelchair. I canāt remember where I read it or how they arrived at that figure. All I can say is that nobody knows what the future holds and MS is different for everyone. Iāve had a relapse that put me in a wheelchair for a while and affected my mobility long-term. I can still walk, just not as far or as fast as I used to. I also know of someone whose only symptom is pins and needles, no mobility issues at all.
You may never even need a walking stick, or you may progress from stick to Rollator to scooter. Take each day as it comes. You canāt plan for what MS does to you, so try not to worry too much about the possibility of losing your mobility. Live life to the full while you can.
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Walking difficulties or trouble with balance affect the majority of people with multiple sclerosis, and 70% of people with MS-related walking difficulties report that trouble walking is the most challenging aspect of MS.
Yet, 40% of people with MS ārarely or neverā discuss walking problems with their doctor, according to the results of a June 2011 survey conducted online by Harris Interactive on behalf of the National Multiple Sclerosis Society (NMSS) and Acorda Therapeutics Ā®, Inc. (Nasdaq: ACOR).
Key findings:
The survey also found that both men and women with MS who report difficulty walking1 believe that it can put them at risk, but that women are especially concerned that walking problems can be hazardous:
- An estimated 78% of these women and 62% of these men report that trouble walking āmakes getting around dangerous.ā
Additional findings related to falls revealed that:
- Among adults with MS who experience difficulty walking, 60% indicate that they have fallen and 34% of those individuals say that a fall resulted in an injury.ā
- Typically, people who have experienced falls report having fallen about three times in the prior six months.
This report indicates how dangerous getting around is for MSers - more folk with MS should try using a wheelchair or powerchair or scooter to get around, and report falls to their GP or MS Nurse.
Ref:
Hope this helps.
Fay
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Hi Lindiepop
Youāve come up with quite a few things on a thread thatās been thus far concerned mainly with wheelchair use. You may find that by starting a new thread you might have a few more answers.
Meanwhile, hereās my two pennorth.
Your OT has ordered a shower chair, which is a good start, but thatās not going to help with the loo at all. If youāre actually at the point where you canāt do a standing transfer, then should you be looking at hoisting?
Have you had any social work input, for example a care plan? It does sound like what youāre doing is a bit dangerous and could end up with you doing yourself some injury. Personally I have broken a few loo seats in my time, and even one actual toilet. But in general I am able to do standing transfers.
With regard to ISC, it still requires that you be sat on the loo to do it, the catheters arenāt long enough to reach from a wheelchair to the loo (about 6 inches for a female catheter). However, learning to do it may seem a bit embarrassing at first, but you do soon become less embarrassed. The nurses who teach you are so matter of fact, that it removes any embarrassment from the situation. But would you be looking at ISC purely to avoid transfers? If so, it wouldnāt help.
The same thing obviously remains true for bowel care, whatever your problems and whatever the solution, most do require that you be sat on the loo.
Personally, Iāve now got a supra pubic catheter and a colostomy, so in general I donāt have the same issue with regard to sitting on the loo many times per day. But my reasons for both solutions were not related to getting on and off the loo, they were medical issues which needed a different solution.
I also have hand problems, Iām no longer able to write with a pen, but manage to type on a tablet type keyboard using my thumbs. If your hand problems are significant, you might have more of an issue with ISC. I managed for years but then I started to use ISC before my hands got too bad, so I was used to doing it when my right hand decided to give up learning new things.
And in terms of your partner having to do most things, and / or help with personal care, again, maybe this is something you nee to discuss as part of a care plan.
Have a look at your local authorityās website for adult services and give them a call to see what help they can give you, even if itās just advice and guidance.
Sue
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Social stigma and wheelchair use: Have attitudes towards the sick and disabled improved?
A report by the National Centre for Social Research (NatCen) suggests that hatred of sick and disabled claimants may finally be on the wane.
The 34th British Social Attitudes report, for which 2,942 people were interviewed, found that:
for the first time in more than 30 years disabled claimants rather than pensioners are the publicās top priority for extra spending on benefits.
The report found that:
67% said that spending on benefits for disabled people was one their top two priorities for extra welfare spending, up from 53% in 2010.
So for those of you who avoid using a wheelchair or powerchair for social reasons rather than health reasons - it might be time for a rethink.
Is my safety more important?
Fay
Ref:
https://www.benefitsandwork.co.uk/news/3644-5-july-2017-update
Thanks Whammel
Going on from Fayās post #5, the one thing you cannot trust is averages - unless you are dealing with a very large pool of people.
I had a (triple) heart bypass in 2000. The average life of a heart bypass then was 7 years - so Iām 10 years over that.
The average male life expectancy then was to live to 74 - I am now 79. This does not mean I died 5 years ago!
āMS shortens your life by 5 yearsā. You do the math.
āNo-one gets MS over 65ā. Really? My Dx was at 71, and I had Transverse Myelitis for a year before that.
Yes, you can really trust those averages (not).
OK, so I have just moved house to get to a āwheelchair friendlyā place. I am not yet in a w/c, and am considering a scooter. I do, however need two sticks,or a 4-wheeled walker, or a Zimmer frame to get about, plus an FES.
You do what you can do, then you adapt, then you do some more and adapt again.
I can see me in a w/c when I am 80 - but what about those who are in a w/c at 40. You get two choices - give up, or keep going.
Your call!
Geoff
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Hi there!
I was where you are nowā¦at the crosswords of making VERY dodgy transfers from wheelie to loo and having so many falls and breaking several loo seats and also a loo bowlā¦now that IS embarrassing!
So I`ve never done ISC but went for a supra pubic catheter, as emptying was hourly and retention was a problem too. I was truly, truly fed up!!!
I`d been using a patient turner and when I fell off that a few times, we knew something drastic had to happen. My standing strength was shot!
With the help of a lovely Manual handling lady, and an OT, we decided the best thing was to go for hoisting. Tried a portable floor hoist first.....horrid! Hard to push on carpets and needed so much room for its legs to open to get my wheelie in. Poor hubby was relegated to the spare room for a week and I hated being on my own and he couldnt sleep incase I needed him.
Next thing was to go for ceiling hoists. I had to be means tested and got help from council and a charity. I`ve had them (1 in bedroom and 1 in lounge) for 4 years and they are fantastic.
So my best options were and spc and ceiling hoists.
I dont need to use public loos, but if I do I look for the fabulous Changing Places loos, which are springing up everywhere now. They have hoists, but you need to use your own sling.
Hopefully, I and others here have eased your fears and you are able to see there are answers to your current problems and life will be better than it is now hun.
much love Pollsxxx
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Iām in much the same boat with my mother, she too has recently become unable to stand and like you bowel movements are a problem. She has had a catheter fitted, out of interest, itās a male one that goes inside her so she has a longer tube running down her leg and the bag is strapped at her calf, we are able to push her wheelchair up side the loo and unstrap the bag and empty it straight down the loo, but donāt think even using a male catheter would always you to self catheter while sitting in your chair. Iāve now an image in my head of someone using male catheter and taking aim at the loo !!! Sorry but sometimes we just need to get a giggle when we can. As for bowel movements the best we have managed with mum is to push the wheelchair up to the end of bunk beds in their spare room, she holds onto the end of the bed, I lift her up and push the wheelchair out of the way and slide commode into place. Usually takes several up and downs to get chairs swapped over and her clothes down, then several more for me to wipe as she canāt do that either, then several more to get dressed again and chairs swapped back again. Not ideal but best weāre managing at the moment and ot havenāt done more than send a form asking what she can and canāt do.
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Itās not as straight forward as use it or lose it - no-one ever suggests that short-sighted people should put off wearing glasses for as long as possible - in fact, the opposite, the DVLA will not allow you to drive with uncorrected short-sightedness. If you need a wheelchair, get a wheelchair.
As for the MS trust assertion - āon a regular basisā - what does that mean? Not all the time? For a period of time and then not? All weasel words.
We need proper stats, but no-one wants to provide them. Itās about time they did. Stats donāt really tell you the whole truth either, but at least you can assess probabilities with them.
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Itās āmathsā, not āmathā.
A math is a female moth.
Regards,
A.D.
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17%
I just made that up.
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I remembered something that Alen Coren wrote about spelling / computers
"A MOTH IS A SMALL WINDED INSERT. A MALE MOTH IS A FATH. A MOTH LAYS UP TO TED MILLION ERGS. A MOTH DOES NOT OF COURSE HAVE TO BIRNG THE ERGS UP IN A MEANINGFLU RELATIONSHISM, THE FATH SHOULD BE AN EQUAL PARDON.
?Pardon
OK, A MOTH IS A SMALL WINKED INVERT. A MALE MOTH IS A HAT. "
This may not help you but it made me laugh so I thought I would share it.
Apologies to people with a different sense of humour
Mick
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