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Originally Posted by hutch
I am not familiar with Ataxia, what kind of disorder is this, and what are your exact symptoms from it? I started botox 4 months ago and it really is helping me. As wonderful as JH is, I don't think they are certain on what all my neurological problems are and how they are connected to each other or not connected. I am sure you know how frustrating it can be! How did you like the support group, was it helpful? Do you live near Baltimore? I live in North wales--PA, about 35 miles from philly. take good care
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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!