harishjp

I lost my father about 12 years ago for SCA, recently my uncle was diagnosed with the same, and we got to know about the name of the disorder only recently. Quite a few people in close family have died because of this. I'm pretty scared and I'm positive that I have the disorder but have not found the courage to get the tests. How did you get the courage to get the tests done? Is there any benefit at all for getting this done?

Agree with you. I've decided to stay single and not let anyone get affected by this. Somehow I've ignored this problem and living without worry almost all the time. It does creep in occasionally but I just tell, its not something I can fix and move on. The hardest is when I look at my brother, sister, cousin, nieces and nephews and think that there maybe a few with this dis-order, its heartbreaking. I really do hope that something comes up before these people have to grow up. The real trouble is sometimes these kick-in really early, one of my cousins ended up with a severe degeneration and died at an age of 10. My father did not last 3 years after the first symptoms kicked in. I have done a bit of readup and know that this is a class of dis-orders and each variant differs w.r.t when it kicks in, symptomatic variations and time taken for the degeneration to become fatal. I do hope, there is something that comes up so that none of the younger ones will have to go through this. I really do not know what is the right thing to do, tell everyone to get the test done and see how to change lifestyle or just leave it until the symptoms kick in. I do hope to stay in touch with you so that in case you find something which helps, I can pass it on to my family and vice-versa.

Thanks, good to hear that it took 5 years. Its been a few months for me so might find reason to do so sometime in the future. Until then I try to not to worry about, doing the same as you. Travel and do things that I would like to do. Luckily not married yet so do not have to worry about kids.