Living With Ataxia - Online Support Group

It is one week to my 40th birthday, so I'm one week off the goal I set myself to still be living independently at 40.

There were times I wondered if this goal was a little unrealistic given the speed things appeared to be progressing, especially with my speech and arms starting to be affected last year.

I wonder if a goal of another 5 years to make it to 45 still independant will be too unrealistic? (by independent I mean been able to at least dress, feed myself, make myself something basic to eat and manage to get inca out via an electric chair or scooter).

I might consider a cleaner though at some point in the future when it gets too much. I do occasionally get a cleaning service in when I can afford it, for a good spring clean moving all warbrobes etc then I try and keep it tidy for as long as I can.

I can't afford any staff wages at moment though with having to buy new scooter and having that to pay back, still all housework is exercise and it seems to be keeping my muscles working for now, even if everything does take twice as long.

I never been much of a gym bunny, i rather go for a long walk with the dog, than do 200 sit ups, so it was hard work sticking to the mundane physio exercises to start with, but the Wii makes things more fun.

I have asked a friend to get me a game I have seen it comes out here 5th june, just day before my birthday so I dont know if I will get it for that day. Its a bit more of an assault course than just gym exercises and you have to do the motions to make your character swing on monkey bars, run, canoe etc.

I asked on another site and a guy whose paraplegic has this (its already out in US) and says nearly all of it can be done from sitting and there's other ways round some exercises for example squats.. if you just bend arm quickly (thats holding wii remote) it will count it as as squat, rather than squatting with whole body. It will be good for arm strength and range of motion which I really need to keep as much as possible to stand a chance of staying independent as long as possible.

I thought it would make exercising a bit more fun and intense as with wii fit you can only do so many at once then have to stop and keep pressing A to either change exercise or do the same one again. Wii Fit is good if you can only manage a few at a time and want to work on building up slowly. It's been good for me helping me build up and its good for a day when I don't have as much energy or just want to do one set of each thing for 15 mins or something.

Hopefully this new one will give my arms a bit more of a challenge as although its possible to manage independently if your legs dont work, you are kinda stuffed without your arms working!

If I can keep good gross motor movement and strength in arms and shoulders even with fine motor difficulties I can find a way around most things using gripping aids, things with bigger buttons (e.g 'giant' tv remote) , bigger handles - using foam around things like pens, brushes, cutlery. etc.

Here's to another 5 years of independence (keeping everything crossed!)

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