what if you cannot walk and you are told to take... - Ataxia UK

Ataxia UK
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what if you cannot walk and you are told to take exercise

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I have been diagnosed in the last year with progressive cerebellar ataxia/ I look at people walking past my house but I can no longer walk unaided . the DVLA are deciding whether I can keep my licence- the car is my legs and when I drive I feel free and like a member of the human race. I always walked a great deal in the past - each day I would walk at least 10 miles but now I cannot do this. I fall over if I use a stick so I have a very good lightweight walker from Coopers but it is no good in gravel or other awkward surfaces. My partner left me as he could not cope with my disability so I live alone and it is fine. social gatherings are also a problem as I cannot swallow or speak clearly. I bought a treadmill as I hoped this would help but I am nervous of falling off it. any ideas for exercise I would be grateful I have put on weight now and this is depressing- I cannot swallow salads, fruit, tomatoes etc so my diet is not healthy. any ideas would be great !thanks

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Hi...it is very hard when you are not able to do the things you used to do. I exercise most days I go spinning and have a personal trainer . I also have my own cross trainer and bike at home. Spinning is excellent as its a really tough workout but no risk of falling . I also am unable to walk un aided anymore I use walking poles. Regards the food issues have you seen a speech therapist to assess your swallow at all. Best wishes x

thanks for these ideas. the speech ad language therapist is very helpful as she says my airway is compromised- ie I choke a lot. I asked physio about spinning but she said I was too weak to do it. cross trainer seems a good idea and I will ask at the gym I attend. many thanksxx

thanks for this I do see a speech therapist on a regular basis as she says my airway is compromised and I need to be careful when swallowing. I asked about spinning but was told it would be too hard for me I am 76 but I don't feel it . keeping positive is hard. one of my sons lives in Dubai and he has been over on a visit and he was shocked at my decline. when he leaves I always worry I will die before he comes again but I suppose bad things happen to everyone. I went on a 3 day coach trip last year but the coach company told me if I go again with them I must come with a carer so that upset me. I am booked to go to Lourdes in September and there will be a lot of help there so I keep going until that happens. the current cold weather makes me feel ill so what a pain. It would be so easy just to give up and stay indoors but I do not want to do that.

What about swimming? It doesn't require balance and I have found it is the one place I am almost 'normal.' I am extremely lucky that I have a pool near me which is part of The Calvert Trust Centre on Exmoor which is designed for disabled people so is very good. Only downside for you maybe is you can't go on your own for safety reasons.

thanks for this. have been thinking about swimming but after a left knee replacement I cannot do breast stroke any more and I never learnt other strokes bit this is a good idea xx

It might sound odd, but walking in the pool is very good exercise. So even if you can't swim, do go and get wet.

Hi sorry to hear about your problems but wanted to say well done for remaining positive & looking for things to make a difference.

I have CA but luckily its fairly mild just affecting my balance & speech - I found that the best forms of exercise are either swimming or using a treadmill at a gym for walking. The advantage of gym treadmills is that they have strong 'arms' which you can hold onto for support whilst your legs are working - gave me a sense of security + felt better as I was doing something to do me good. There is the extra advantage that there are people to help should you fall off or anything.

Also I have been thinking of getting a walker specifically so I can go for walks again -- do you know any solid robust ones??

in reply to glosman

I bought a veloped- very expensive- but it is very stable and goes up and down kerbs. I also can manage some gardening with it as well as using it to walk with.It has given me back some of my independance.

I have tried various walkers and the lightweight ones from the Coopers catalogue is good as you can fold it up and put it in the car.but it is not suitable for long walks outside - it is fine for tarmac but not good for off piste! I must try to get to the local disabled gym but I put it off as it is hard to park there- you always get blocked in. we hve a local diala ride service but you have to book it in advance and I never know how well I will feel from day to day.It would be easy to just vegetate but I know I must keep moving,

thanks for reply xx

Hi..,I can't walk and am in a wheelchair, but fortunately have very supportive husband. He gets me in and out of the car, and does everything else. At home I have an exercise bike and some walking rails. I go to pirates once a fortnight for a 1-1 session. I can't do stairs , the studio is up a flight but my instructor gives me a piggyback up and down - good man!! I it makes me feel better both physically and emotionwlly.

As for food have you thought of getting a smoothie then you can have fruit and veg without too much difficulty.

Social groups are difficult for me too as my hearing is not too good and when you're in a wheelchair it's worse. I find small groups, sitting down much easier

Sorry I don'good a pirates session but a Pilates session!!!

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hi , some tips i use

for walking try electric wheelchair or scooter.

Blender shakes are good healthy. swimming good exercise , stationary equipment good. Machines in gym do not move. Eating wise speak to speech therapist. Speaking i use mobile phone.I type then get others to read the screen.Get app on playstore on Andriod mobile phone.Called speak it or type it. All the best.

thanks for this- I tried the controls on car but felt very unsafe. the DVLA are currently deciding if I can continue driving or not. I drive short distances locally but sometimes parking is a problem so I use my attendance allowance to pay for cabs. I had a GA this month for an op on my nose and it really affected my swallowing but I hope it will soon settle down now. lets hope we have a decent summer- it goes too quickly . all the best Sylviax

hi have you had adaptions to your car to help you remain mobile, such as hand controls, also are you able to access motability as you can have adaptions that can get a wheelchair or scooter in the car for you, and then you dont need to have help off anyone to go out and do what you want to do. As others have said you can see speech therapist with regard to the swallowing but also what about asking to see a dietician for guideance on weight loss, if you have a physiotherapist they could give you exercises that you can do whilst sat or on bed which also would help your muscles, not sure how safe a treadmill would be with ataxia.

thanks for all the comments sometimes it would be easy to just give up and blob out but your comments are very helpfulx

I have seen a speech and language therapist (SALT) and they say the usual things. Small pieces and chew slowly. The only problem is that we don't think about this before we eat. Sorry about your ex, there are some awful people in the world. Find a support group near you. Go to Ataxia UK and look for one on the website. I am in Bournemouth Dorset. There seems to be quite a few around. Good luck to you friend.

HI Sylvia;

I also been diagnosed with the same as you, I don't have the swallowing problem, however I sold my car because my dept of perception was not good. I am going for

speech therapy and physio, I hope it works I am doing everything I can to beat this

affliction. I am going to try to go to NAF next meeting it's in Orlando next year in

April, will let you know what they say. I am sorry to read about your partner, it's very

difficult to live alone with this affliction. I don't think I could.

I have been Married 3 years now, and it's very hard on him.

I am 72 years young, not ready for my children to take care of me.

Regards Sheila..

P.S. I live in Las Vegas. My E-mail is sheilamay0211@yahoo.com

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