Originally Posted by Garrittygirl

THANK YOU, CRAIG! I am not alone, as this website has just confirmed by your response! I needed that. In answer to you last paragraph questions as to what I NEED/WANT from this forum - it's quite simple. I want to know I have kindred souls in this world, SCA people like me. And, I would like to keep abreast of any updates in medical advances that MIGHT ease some of the progressive symptoms.

I, like you, no longer go to neurologists, because I am tired of the doubting looks in their eyes. And, I rarely go to the hospital when I have seizures, or my tremors cause severe side effects. The main reason for that is simple: when I go to the hospital, I end up lying there, seizing, taking my medicine, and the hospital taking my blood. Then I go to sleep.

By avoiding the hospital, I can take my medicine, lay down, and drift off to sleep, and KEEP my blood, as I am DEATHLY afraid of needles. I'll simply stick with my general practioner to maintain my medicines for now.

I am well aware that the symptoms I am experiencing are unlike anything I've ever thought possible. And, in once sense, for me, I've sort of felt like the character in "Phenomenon" - as parts of my brain give out, other parts kick in, and try to compensate, and THAT part of this journey has become quite an interesting discovery.

Keep the faith, and stay strong, all my SCA brothers and sisters. And- thank you again, Craig! God Bless! ~~ Garrittygirl