How do you know when it's time to start using a ... - Ataxia UK

Ataxia UK
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How do you know when it's time to start using a wheelchair full time?

I use a scooter or wheelchair if i'm going out anywhere.

But I use a crutch for very short distances and around the house. But I keep losing my balance and really need another person on my other side to keep me upright. As tried using a 2nd crutch but didn't work due to my lack of coordination. Standing up and sitting down is also very hard I need help to get back up again etc.

I have been putting off using the wheelchair more as I know if I do this I will end up a full time wheelchair user. Not sure i'm ready or prepared for that. But walking is getting very difficult. Stairs are a no go zone for me now currently have to crawl up them and then bum shuffle down them. I am hopefully having a bedroom and wet room built downstairs soon. My legs seem to struggle with the weight bearing aspect and give way or i'm just to wobbly to stay upright.

I just wondered when the right time was or if any of you have any advice. I only recently found out that my condition is degenerative and had that confirmed by the medical proffession; so its been hard to deal with and quite a shock. I also don't have a definite diagnosis I know I have Ataxia and Dystonia and other symptoms but there of an unkown origin at present.

Thank you

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i'm in the same situation regarding ataxia and dystonia with unknown origins. it's very frustrating and quite scary. I am curious as to how the doctor could say for certain you have progressive ataxia since they don't know its cause.

when I first started using a wheelchair it was because I was tired of missing out on things. my nephew had an event where people would be walking and I had the choice of using the chair or missing it, so I used the chair. I now use the chair almost every time I leave the house. my ataxia is currently in a lighter stage, but walking more than a few feet at a time is very difficult. I could use my walker since it has a seat, but because of hip necrosis, the pain with standing and sitting is too much.

sometimes I feel guilty for using my chair which is silly. i'm not being lazy. I need it. while it's good to push ourselves, if you are asking about using it you probably need it. long term disability is physically, financially, and emotionally challenging in itself. anything that makes life easier for us is a good thing.

stay strong.

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Thank you for your reply. It's extremely frustrating. I was always told I had hyper mobility, lax ligaments and cerebral palsy. None of those conditions are progressive. So I was sent to see a neurologist. They said the way they look at a prognosis is over the last five years and sadly mine has progressed and fast; so they think the likely hood is it will continue to do so. Nothing is definite without a diagnosis. But I have been told to plan my life being in a wheelchair as that is what will happen at some point. They think I have a very rare condition which I have had from birth. I have seen so many different doctors as I am such a complex case and they all say its degenerative. But as you said they don't know the cause so not sure how they can tell me. Unless they have an idea of what it is i'm on the 100,000 genome project and having further genetic testing done.

Yes I agree, I tried a walker but it didn't work for me. I hope that you get answers one day.

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I have been told by a professor at UCL that we need to keep our son weight-bearing for as long as we possibly can.

It seems to me, from reading the posts on this forum, but it is a general consensus that if you exercising to physio you can actually get back some of your strength and mobility.

I would consider a gait trainer as an interim measure before you commit to a wheelchair full-time.

As I'm sure you know, wheelchair use brings with it some of the other negative side effects and can be quite uncomfortable if used on a constant basis.

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Thank you for your advice.

I already do a lot of exercises but am seeing a Neuro Physio at London next year so hopefully they can help.

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Hi Grapes12, I was told by my physio that if I use a wheelchair I wouldn't get out of it, so try and build up strength for as long as possible. I found some useful excersise on this site. I will give it to you as I stumbled across it by accident. walkingwithataxia.com hope it helps.

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Hi, thank you. Thank you for the exercises. I already do quite a few as I am actually a Para athlete so do a lot of work focusing on my core etc.

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I tried for a long time not to use it but when it safer for you /the people around you and makes life easier ,THEN USE IT..

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Thank you for your advice.

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Mpp

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I think it is a question of when you feel very unsafe. My neurologist advised that a bad fall can be one of the dangerous risks. Like most Ataxins I tried to avoid the day of full time wheelchair use but my balance and eye sight problems more or less made the final decision for me. Although I use a chair full time in the house I make a point of moving into an armchair in the evenings and sometimes during the day

My advise is to put your safety first

Best wishes. Ted

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Hi Ted. Thank you. That's good advice. I may have to consider it but if I do will definitely make a point of moving out of the wheelchair.

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Work out what is easier for you? You have already dismissed a walker, but suspect it was not yours but one you borrowed. A walker could be a half way house. I see wheelchair as fully supportive. A 4 wheel walker gives a lot of balance, more than crutches.

Ask your OT for a stairlft and a wet room conversion of the bathroom. Rather than look after you permanently in a home, THEY will pay for home adaptions.

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Thank you. I tried out several different walkers with a Physio when she came to my house. They didn't work for me sadly.

My stairs are to narrow for a stair lift. So am having a downstairs conversion instead.

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