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Ataxia Support

Some thoughts about Ataxia

I’ve had Ataxia for many years now - possibly longer than most of you here. I’m talking over 50 years. It started with me just as I was being separated from the military during the Vietnam War. Over the years it has exacerbated and really detoured my life so much so that instead of reaching my life’s goals I found myself coping with the detours instead. That’s not good but it is what it is! You have to do what you have to do.

That’s not good but my illness has also created questions and such. Such as, I sincerely doubt that healthy folks that are sympathetic to us really understand our plight. They mean well [yes, doctors and such] but in they’re sympathy they’re actually thinking “Thank goodness it’s not me.” I’m not judging them but that’s where my head is at.

We all face a coping problems now and then. We all fall now and then in situations that are in public. Plus other events might take place. How do you deal with it? I’m pretty sure that I know what you’re gonna say but it’s important that you post your answer because it might help someone else to read it.

We have a very rare illness so it’s vitally important to get it out there. Recently, I posted a link to a magazine that deals with Brain illnesses. I asked you to contact them to do an article on our condition. How many of you contacted them? We don’t have a “voice” or celebrity regarding our condition so it’s important for us to make it happen. Sorry if it sounds like I’m preaching but I don’t know what else to do. Please contact your government offices, newspapers, radio stations plus anyone else you can think of. We have to make the doors start creaking. We don’t have the more popular illnesses! Thanks.

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:slightly_smiling_face: I can relate to symptoms described in the link, and think the advice given is also appropriate for Ataxia, for me anyway. And, we know that Parkinson’s and MS do cross paths with Ataxia. At some point it’s likely this publication will get round to specifically mentioning Ataxia, but in the meantime we know research is ongoing, even if Ataxia hasn’t as yet been given a mention here. Being able to promote awareness may not come easy to many people, they may not have the energy or concentration, but I’m sure those of us who can, do so whenever possible.

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I think you’re lucky that you have found your voice and are able to use it! I’ve only been diagnosed for a few months and mostly I’m just waffling between reality and denial. I have to figure out my house accessibility and job future and that is so freaking overwhelming…knowing it won’t be the path I planned on… So I agree with Beryl, we all have to do what we can and be patient with ourselves and others when we can’t.

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