I too am glad I found this forum!
I was diagnosed with SCA3, also known as Machado/Joseph Disease in August,2006 after finally consenting to genetic testing. I wonder what you mean by "commercially available types of autosomal dominants." I inherited from my father who was part of the orginal family being tested in this area...(New England) in the late 1960's.
My symptoms of poor balance and poor coordination started when I was 53, I am now 60. Mine is considered late onset and progression is slow. Sometimes I use a cane and need to be very aware and careful not to fall. I just saw the neurologist this week in Boston who is following me and he said there has been virtually no progression since January. Hooray!
He encouraged me to do the exercises I learned in physical therapy to improve balance and leg strengthening. ( I have been lax at this.) He says that new developments look promising in finding treatments to halt or at least slow the progression.
Hope you are doing well.
Quote:
Originally Posted by color
After browsing here and there on this forum as a new member, after a few days of searching where we might "FIT" , I FINALLY, FINALLY found this pearl thread --- thank you!! 
I would love to hear more from Cathy and Louise, it's been awhile since you last posted. How is everyone doing??
(Cathy -- I live in PA too, right outside of Allentown -- eastern PA).
(Louise -- Ours is an hereditary Ataxia, too - 'SCA, type unknown' dx. I've tested for some of the commercially available types of autosomal dominants (we have at least 3 generations' worth of affected individuals), but all to no avail as of yet. I have a young son and some nieces/nephews who are at risk of inheriting the faulty gene (50/50), and so I plan to continue with the testing in the future, as it is relevant. Fortunately, I am in the mild stages at this point.
Take care and I hope all is well. |