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Ataxia UK
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idiopathic cerebellar ataxia

I've had cerebellar ataxia end of 2014. unknown cause they call it idiopathic.i am so fed up with it.. Does anyone else feel down with it. Sheffield where I am being treated tried mycophenolate in January but I couldn't handle it . jt made me sick and I was told there is nothing else. have you been there I sometimes feel whats the use. let me know how you feel

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I often feel depressed about my diagnosis and the plans I had made for my life which will no longer come to fruition. I find that the best way for me to deal with the bad moments Is to get busy and take my mind off my situation. I find that helping others ie. looking after pets , dog walking, helping relatives with household chores etc all these things are useful. the main thing that works for me though both physically and mentally is exercise. a walk in the countryside does me a world of good, as does pedalling on my static bike for 1/2 hour. these are just little things but for me they work wonders.

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I've had ataxia for 20+ years and it has progressively gotten worse and will continue to do so. Initially, I was diagnosed with Sporadic (Idiopathic) Cerebellar Ataxia, but last year, through exome genetic testing, I found out I have ataxia due to Niemann Pick C1 disease (very rare, especially adult onset). Anyway, I use to be very active/athletic which I cannot be any longer. For me that's been the hardest part of all this. I find though, so many things in my life to be thankful for (loving family-five grandchildren/friends), therefore I count my blessings and relish all I'm able to do, rather then focus on the things I can no longer do.That helps me each and every day...,my best to you...

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I feel as you do but I do have a PT who is very encouraging He is very anti-doctor. Keeps telling me, your neurology is way off but your body still works. xxN

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Same here I am getting to the stage why should I be bothered with all the appointments anymore

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I get fed up with the doctors as well. I really miss what I can no longer do and it angers me that I will never be able to do many of the things I enjoyed. Exercise, a positive outlook and very good friends keep me somewhat sane.

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I’ve had ataxia for 5 years but I also get depressed at times I just try to stay positive and do things to keep me busy. Currently, I’ve been doing home exercises which tire me out I get so tired but people look at me and say I’m in good shape so that makes me happy. Don’t give up! And always follow your dreams whatever they may be! X

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Why don’t you try acetazolamide, or Diamox?

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Depression is a killer. So you cannot do physically what you could do but I go swimming and focus on doing a mile a week and meet really lovely people instead of staying at home feeling sorry for myself and totally miserable. Do what you can and it will reward you. Do not give house room to depression!

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My daughter has hereditary Cerebella Ataxia ( had it since birth ) She is now 19 yrs. She her balance is gradually getting worse. I have asked for her to be referred to Professor H. At sheffield as she has not had any neurological care for 12 yrs after moving to a new area. She eventually got a neurologist at the local hospital about 12 months since and has just been prescribed ACETAZOLAMIDE TABLETS. She has only been taking them 3 days. They have to be gradually increased to 4 a day. So too soon to tell if they will help.

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Same here in the USA! I have been diagnosed as well with "Idiopathic cerebellar ataxia" because no one can figure out why I have it, how I got it, how to treat it. There is no treatment, no cure, and I feel like no matter what I do, or change/improve my nutrition, nothing changes. I use all my energy just being me and moving. Yoga helps although I cannot do anything much upright. I am great with Pilates, on the floor. Luckily, I have earned a very strong core.

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Yup Patsy, I frequently feel well and truly cheesed off, but this is the hand I've been dealt so I have to play it the best I can. However, how you respond to whats happened to you is only part of the problem. On the whole I can cope with the fact that my life has been irrevocably changed by the condition. But so what! Big deal! the real anguish for me is witnessing how my ataxia over the past eight years or so has altered the life of my wife.

I can no longer manage much of the DIY around the house, no going up ladders for example, only short bursts of gardening. She either has to do a lot more herself or I have to summon a host of little men. Our holidays are now being determined by what I can cope with, and not necessarily with where we'd really like to be. I now dread having to negotiate airports for example. The lives of partners have changes which shadow those we experience. I often forget that. This site would probably benefit from a section for partners of sufferers. We could call it Ataxiamate Ataxiaspouse or something like that. Anyway, keep upright and sleep a lot. Good luck Patsy

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