Quote:
Originally Posted by color
Hi Hutch,
Sure, here's a quick definition that is taken from the National Ataxia Foundation's publication called Generations:
How to Explain Ataxia
"I have a problem with poor balance, clumsy coordination and slurred speech. It's called Ataxia. The balance center in my brain (the cerebellum) is not working well. This can be caused by a genetic problem, a toxin that a person is exposed to, or a stroke or injury. In some cases the doctor does not know what caused it and then the physician continues to look for a cause.
My Ataxia may continue to slowly get worse, but I can partially control it with physical therapy and medications. Even though Ataxia may look like multiple sclerosis or some of the other movement disorders, the causes are different, the treatments are different and the research organizations that are working for cures are different. Ataxia is its own unique disorder...."
Fortunately for me, I am in the mild stages of our disorder (it's a family affair for me - at least 3 generations have been affected, and we're all different in some way. And that's what makes it so incredibly difficult to pinpoint for the researchers. Currently, we're very involved with genetic testing to see if the "Affecteds" all have the same faulty gene, and that is what I'm waiting to hear from the NIH. But if nothing pops up, then I don't know what my next step is...)
The support group meeting at Johns Hopkins was very good. There are sooooo many different types of Ataxia (dominant, recessive, juvenile-onset, adult-onset, hereditary, sporadic, idiopathic), and so it was eye-opening and humbling to me. I am so very lucky and grateful, considering...
We live in Allentown (my husband, 7 YO son, our golden retriever puppy named Bonzo and me). I know your neck of the woods very well -- I used to work in Collegeville!
Have you ever gone to the Univ of PA for examination/treatment? That's where I saw my first Ataxia specialist. Maybe they have a Movement
Disorders group there for you? Is yours a family affair, too?
Take care, and I'm so glad to be corresponding with you about this!
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I had my cervical laminectomy at U of P. Excellent surgeon---but had some bad experiences with the hospital. This is the only reason I am going to JH now. I have such similar symptoms as you?? I was adopted as a young child, so I have no way of having genetic testing. Isn't it frustrating when you want to understand what lies ahead of you but they can not say because everyone is different. Sometimes though I think its sometimes better if I don't know any way?? The crazy thing about my situation is the number of issues going on neurolically?? The list is never ending and I can't grasp the fact that they are all seperate entities?? But thats what the doctors are telling me--it just doesn't make sense. As far as your Ataxia--can it go into remission? I was surprised you were from Allentown---we're neighbors!!! I wish you all the best, and the one good thing is with research you never know when they will figure out a cure for these things. hutch
08-09-2009, 01:10 PM
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