Living with Ataxia

I was diagnosed eventually about five years' ago. Originally thought I had ME. No pain just co-ordination, eyesight and mobility problems. Gets more and more difficult to get about the house with rollator. Have tried several medications, including Gabapentin, Busopine and a couple of others but nothing seems to help with balance and dizziness, apart from sitting or lying with eyes shut. Makes it difficult to read or pursue crafting hobbies which I love to do. Anyone with similar symptoms? Any help or advice?

4 Replies

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  • Yes but w/o the eyes shut thing. Also you seem to type. That's good. I haven't taken anything yet 4 dizziness and/or imbalance but I doubt anything will work 4 me. Never does. Chin up. N

  • Hi Goodenough

    I think Ataxia should be spelt with an F ( frustrating) We are all looking for help & advise and there is nothing wrong with that I recently had a very bad fall and boy did I go 'wollop' however I am still here but with pain all over the place!! All I can say is there are so many other illnesses for which 'they' have no answers that we just have to do our best to be cheerful

    Everyone have a very happy Christmas

    Cheers Ted

  • Dear goodenough,

    I feel for you and like tedjohnson says it is frustating. I also feel dizzy when I walk and specially bend down. But try and find some positivity, however small it maybe. I have just redone my kitchen replacing lower cupboads with draws and that has sorted out the bending and being dizzy. At the moment I am doing all the exercise I can comfortably and and I am improving everyday I am able to do a little more and I am grateful for it. I celebrate every achievement, however small. That keeps me looking up and positive, be sure not to feel a victim. Remember you have ataxia, ataxia does not have you and try to succeed at whatever you can. Chin up, we are still here and able to see and be with our families and friends.

    Best wishes for the festive season for you and everyone who may read this

    Isabel

  • Hi ive just signed up so im new to the website. I too have had Ataxia for 5 years. It was a long process, my doctor couldn't quite figure out what type of Ataxia i have until recently he has now diagnosed me with Ataxia with occulomotor apraxia type 2 which is upsetting :(. I too have tried Gabopentin but doesn't help as much. I find having a bit of fresh air helps alot with the dizziness.. Hope this helps :)

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