What does having ataxia do to your life?

Posted by wittmack @wittmack, Jul 9, 2019

What does having ataxia do to your life? I have just been diagnosed this year and am interested in hearing others stories of the progression.

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Profile picture for sandymitchelll @sandymitchelll

My ataxia also has neuropathy with it. Hands and feet and as it progresses it seems to affect all my sensory nerves. It’s hard to tell whether it’s hot or cold. Everything I touch is super sensitive.
It took time to progress to this point. I’m 63 now. This whole thing started when I was thirty seven after receiving a mmr shot to go to college.
The neuropathy started im latter 40s. Then I started getting off balance and in the later years it got real bad with neuropathy. I saw numerous neurologists and they could not diagnose it and they still can’t so I am idiopathic. Now I use a scooter and walk short distances with help.
The mayo was the first to say it was ataxia. But of course no cause is known.
Balance is bad now. Especially in dark. Neuropathy on hands and feet is bad

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@sandymitchelll I am sorry for you. I too have ataxia. It is one of the many symptoms of SS. It has put me in a wheelchair. I have learned the meaning of modesty. It means to accept one’s own limitations. I’m not suggesting that you should give up. No! I will pray for you.

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I’m fighting ataxia also. It’s a symptom of SS. I. I’m in a wheelchair now. Don’t give up. Keep on trying. I will pray for you.

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I have ataxia 24/7 because of SS. The worst part is falling. Falls are dangerous. My wheelchair will not fit into my bathroom. So I fell and wedged between the toilet bowl and the shower, got stuck and had to call for help. My second fall this week. Please be careful and I will too.

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