So I’m really just looking for some advice about when you’d consider / did get a wheelchair. I’ve been dx’ed with MS for 5 years now - RES RRMS, on Tysabri. Lots of little flare ups but nothing the MS nurses have considered a relapse since being on the Tysabri, but still gone slowly downhill in some areas. I can’t drive (epilepsy) and live on my own so have to walk or bus everywhere. I’m currently at uni and I’m finding getting about everywhere hard going. I have constant left foot pain, though I’ve had this for years, but it’s worsened somewhat of late. I get a lot of pain in my legs (and arms) from fatigue (which is potentially my worst symptom) so struggle to walk any distance (probably at most half the length of a football pitch before I’m absolutely done in). I also get a lot of leg and arm weakness which along with the foot pain means I have real problems standing on the spot e.g. for queues. Having said all of this, to look at me I look absolutely fine - I don’t even use a walking stick most of the time. But I would say that that’s because it’s more related to fatigue and weakness which a walking stick won’t help with (and my arm becomes exhausted holding one) rather than my gait or balance. So yeah - I a considering getting a chair as I’m just so knackered all the time and I seem to be using up all my energy just getting about places. But am I just being too soft / weak? Is this too early? You can be honest. Thanks
Thanks for your replies. Yeah, re the arms - I used to play wheelchair basketball (with the idea that I wouldn’t feel so bad about using a chair when the time came) and I had to give it up in the end. I would need a powered chair because I have the same weakness in my arms as I do in my legs. It’s also likely I’d have to move as the flat (ground floor) I’m renting at the moment is in a block that has a large kerb/step to get into in, so wouldn’t be accessible with a wheelchair. I know the owners should chair this, but really - what are the chances?
It seems to me that the best way of thinking about mobility aids is primarily in terms of practicality: the best mobility aids are the ones that minimise the impact of MS on our lives.
How we will feel about being the person with a walking stick (or two) or the person on a scooter or the person in a chair is a thing, obviously. But it seems to me likely that the extra energy for doing the things we love that comes from the right mobility aid tends to outweigh and downsides.
And as for what other people might think about you or how/whether they might judge you or pity you or whatever…well, stuff 'em, quite honestly!
Hello Comet I agree with everyone. Especially Alison. Other people’s view should be utterly irrelevant. And I do know that’s easy to say and hard to live by. I bought a cheap wheelchair years ago for occasional use on holidays etc when needing to do more walking, so a practical aid was needed. Then I was referred to my local Wheelchair Service for a chair when my need became greater. They provide me with a manual self propelled chair. I was given an assessment for a powered chair but having tried one out, realised there’s no way I would use one in the house. And my local Wheelchair Services will only provide a powered chair for a person who needs one indoors as well as outside. The chairs they provide are great big unwieldy things. You also have to have your feet on the great big sticky out footplates all the time, so I’d find actually using one would restrict my mobility more than it would gain me. I’m lucky in that I can wheel myself around the house OK and have a lovely husband who pushes me when we’re out. So it depends whether you can actually get what you need from Wheelchair Services, or can afford to buy what you want in the way of a powered chair. A mid way point might be to get crutches rather than one or two sticks. Crutches provide much more support than sticks, are easier to use and you can hook them over your arm when needing to do something apart from walk. You can buy crutches that are better than just flimsy grey and silver NHS ones, so actually look a bit better. I bought mine from a company called Cool Crutches, but there are lots of different companies making elbow crutches in different designs. Crutches also have the benefit of making your walking safer, more ‘musculature friendly’, and keep you walking for longer. As for when is the time you could / should start using aids, it sometimes feels like you need to be told, or kind of get permission for them. It really depends on what will actually help you to live your life more freely and easily. If you feel the time for a wheelchair is now, then it is. Best of luck with enhancing your mobility with whatever you need. Sue
Know exactly where you are coming from. For 10 years plus, I could walk okay, then needed a stick - or two. The amount I could walk in both time and distance was getting less and less and being really frustrating. Added to which, like you standing in a queue, or for a bus was incredibly painful.
For “big days out” like going round museums, exhibitions and the like I started to hire one. But then needed someone to push me. Which meant my son, who works or a carer - which was rare. (We don’t do socialisation : quote from social services)
So on a hol in 2012 we hired one. Convinced i now needed one, got a referral to wheelchair services and a manual. Realised over some months I don’t have the upper body strength for that and got add on motor. THEN I could go further and faster than I had in TEN YEARS.
now I have an off roader as well and can visit terrain I havent seen in many a year.
I was diagnosed in 2012 after a brain biopsy and then kept struggling on until 2016 when I finally gave in and bought a mobility scooter.
It has honestly transformed my life now being able to go out with my kids and wife.The only reason I didn’t opt for a wheelchair was because my left arm spacitity means I have no use of my left arm.
So my advice would be go for it (but I would suggest you go for an electric wheelchair / powerchair (that’s what I now want to help me even more than my scooter).
I’m 35 and couldn’t care less what I look like on my scooter…
You don’t sound ‘soft’. If you feel it will help you to be able to continue with a normal as possible life why not !
i recognise the feeling that while you can walk, it’s somehow ‘wrong’. There is also the ‘use it or lose it argument’. For me, I have desided that if I make a decision not to do something that with an aid I would do, that is the point I would get one.
p.s. When I walk my dog a lot of people are out walking their dogs with scoters. They clearly can walk a bit as I see them getting off to ‘pick up’.
when I am having a bad day I wonder, but as I said it will be the day I phone someone to walk him as I feel I just can’t, that I will.
you have described your fatigue caused by walking a ‘stopping you thing’. My way of sorting my thoughts… If your best friend was asking this question, after really confiding their true thoughts / feelings what advice would you give them ?
big hugs and hopes that you make a disision that works for you.
Ps, it could be worth going into a big supermarket & use theirs to zip around to see how you feel !
Definitely “try before you buy”"…you will have a local Shopmobility scheme around. Register and use their scooters/chairs in a limited environment. See how they handle. Better yet (i don’t know where you live) but come to Naidex - big mobility expo at the NEC Birmingham: its free and there are tons to look at. And again try out.
I was diagnosed in 2005 and am Secondary Progressive. I walk a bit and use a stick but getting my wheels was a really good decision for me. Fatigue was beginning to restrict my life so much. It was a huge decision at the time but a really good one. We got the best looking wheels we could afford which sounds a bit shallow I guess but I do feel better about using my wheels because they do look pretty cool I think. We can go out together and go for miles in the countryside or go into town so the freedom has been great. Anyway, that’s how I ended up with my wheels. I don’t take them for short walks out but they’re very handy to have when needed.