Unfortunately my legs are getting less reliable and I even find it difficult getting from the living room to the kitchen. Not only do my Legs wobble, I get that sinking feeling as though I am about to collapse.
I used to get the collapsing feeling occasionally, but now it seems to be most of the time.
The strange thing is that I can take my walking stick and walk down the street without too many problems, even if I have to walk slowly and carefully.
I'm not dealing with this very well, and of course trying to get an appointment to see someone about a wheelchair, which is what I think I need, is so very difficult. They are talking about waiting for months...
I managed to get an urgent appointment at the Ataxia clinic for December.
Any suggestions for a wheelchair, as I will probably have to buy my own - a self-propelled version?
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Wyndham
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I came to the point you're at about 5 years ago: not needing a wheelchair ALL the time, but needing one for going out and about. I use a walking frame (3 wheel rollater) indoors to move around.
After a lot of research (and taking our budget into consideration) I bought a Neon 'Quickie'. It folds up to go into the boot of our Honda Jazz and is light enough for my retired husband to lift. One tip: Do find a good (accredited) supplier in you area. We used a company called G B L (Southern) who let me try lots of different models and once my choice was made, they ordered it and over a number of visits they adjusted it to suit my needs.
The good thing is, 'Gertie' (the wheelchair), can and will be used indoors when that time comes: as I know it will but until then, I'm going to keep using my legs as much as I can.
Dear SussexDodo. The choice is bewildering, and some like your Neon Quickie, very much out of reach financially. It looks like one of the nicest I have seen on the Internet.
I agree with you about finding a good dealer, but first I need to get the NHS vouchers sorted out.
If I have to have a wheelchair I really would prefer to get one that is somewhat stylish (and light, etc). The problem is I now need one sooner rather than later.
If you are buying new use a BHTA approved supplier. I would look for foldable, lightweight and with pushandles at a comfortable height if you are expecting to be pushed. The ataxia charity and other charities may be able to give you grants.
I found my wheelchair enabled me to do a lot more (initially kept at college then in my car only using it when I was out.) as i had more energy and I could go places I wouldn't have gone previously as they would require too much standing.
It might be possible for you to hire a chair through the red cross or shopmobility while you wait for an NHS assessment.
Ask your Doctor to refer you to see a Occupational Therapist. They will get things rolling regards the wheelchair.
Did for me - cost nothing for chair and they measure you to the chair to make sure of right fit.
If you are going to purchase a chair you may consider getting a "Power Chair" indoor-outdoor use.
As an update, I have just spoken to a friendly lady at the Wheelchair Service at the Finchley Memorial Hospital in London, who advised me that they only approve wheelchairs for indoor use - so if I want one to help me get to the shop on the corner then they are not going to help, and secondly, they have a waiting list of several months even to be assessed.
I use my wheelchair all the time now for both indoors and out.I went from a rollator to a wh/chair last xmas.I have detiorated a lot this year but at least I am safe.I knew it was time to change as I became so weak and wobbly.I can't walk at all now but a wh/ch does give a new sense of freedom.I got my wh/ch free with the service for my area but this has to be changed as my size has changed.I view my wh/ch as a place of safety.
Dear Wyndham, I'm sorry, but I can't offer any advice on a wheelchair. I use a quad-cane and rollator. Anyway, I just wanted you to know that I admire you for recognizing your needs, although it's difficult, as it was for me when I graduated to using a cane a few years ago! But, better safe than sorry! I wish you well...,;o)
I do have a mobility scooter but don't use it as much as I thought I would. Getting it in and out of the boot of my car proved more of a hassle than I had anticipated. I do use it, in nice weather, for trips to the park, or Tesco which is just seven minutes away on my scooter.
After a few telephone calls I discovered the Wheelchair Service has cut back drastically and now only considers offering help if you basically can't walk at all, so no good to me - and you have to wait several months for an assessment.
It also appears that charities that used to offer grants, etc have also cut back.
Fortunately I found a very nice second hand (looks new) wheelchair at a great price, and which is also light, folds up into my boot, etc. Perfect for a first wheelchair. later on, when I've won the lottery I can look at the fancier ones...
Now I just need to work on strengthening my arm muscles
Hi Wyndham! See you had replies re wheelchair (but why aren't Adult Services supplying one??)
Meanwhile - my granddaughter is finding that a tall walking frame , with 'channel' ? armrests - is good for moving about the house. As she says: "My legs do work - but balance isn't there."
If you try an occupational therapist you shouldn't have to pay for it.
I'm in France so slightly different here. I used the occupational therapist to help me and I have a very very expensive kuschall Alber E25 chair. It has motors in the wheels. My husband has severe back problems so pushing me was no longer an option. I have a joystick control and can also push it with a controller on the handle so I can walk as well. Although it was very expensive the state paid nearly all of it, we did have to pay 800 euros though which thankfully my mother paid for me, otherwise i was thinking of doing something as sponsor to raise money and awareness.
This wheelchair has completely changed my life. I can go out on my own - I no longer drive at all. I no longer feel guilty about my husbands back either. I can do things that i could no longer do - a walk around the local lake - obviously on the path
My illness is also in my arms so propelling myself was not an option either.
If you use an occupational therapist they will consider exactly what you need and think about your needs for approx the next five years too, well if you find a good one they will!
Once again thanks for the responses, this community is brilliant!
Unfortunately not so the NHS (not brilliant that is...) It took the Community Neuro Rehabilitation team nearly three weeks to respond to my plea for help with getting a wheelchair, and all they sent me was a self-referral form to the NHS Wheelchair Service (who only supply to those who are completely unable to talk), and they also sent me a list of places I can buy or rent a wheelchair...
sorry to hear it is like that over there. However it did take me over a year to get my wheelchair here in France - so it has been a long hard slog. Meanwhile I had a cheap standard wheelchair but my husband could no longer push me so I couldn't really go out anymore except to people's houses. Anyway good luck to you with it. It is difficult to accept but think of how much more you will be able do with your chair. However if you can continue to walk even with a stick or rollator in the house it will help you to keep your muscles.
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