I have actually been on this site and another before this one for many years. I had to make a new profile for privacy reasons.
I am in my early 40s. I have a hereditary SCA, which I have been diagnosed with for about 10-15 years. I have one child, who is 5. We don’t know if he has it, but to be honest, he is starting to show some signs.
The neurologists around where I live are always baffled about my condition. I get a lot of shrugged shoulders. I am usually fine, but I lose balance sometimes. If I’m sick or tired or distracted I’ll have trouble with my balance, speaking, or doing complicated things. I very occasionally have nystagmus. I take adderall and Topamax, which do help with fatigue and general motivation I guess.
My son has already been kicked out of three preschools. He’s the size of an 8-10 year old and seems to be either really smart or gifted. He’s really strong, like one of those guys who carry rocks and throw logs in the highlander games. And he’s like a type A, “bro” type personality. I think the size/strength and the personality don’t gain him much leeway from these preschool teachers. They tell him to do things and he’s like no. They try to make him and he fights them. I keep telling them look just call me but I guess that’s not an option they just don’t like it that he has an attitude. I can’t say that I blame him because it’s not interesting work and the teachers talk to the kids like they are stupid. He’s about to be evaluated by like three different places-speech and hearing, adhd/autism/iq, and then by the school system.
But so like his speech is slurred, not clear, and he has trouble with his motor function. I can’t tell if those things are “big guy” problems or “smart guy” problems or if it’s ataxia. I know he is frustrated.
I put a note on the paperwork for these places to please let me know if they think he has neurological problems and I’ll take him to the university that studies my family. But man, I hate to be thinking about this already. I mean, I am now wondering if he IS ataxic and could THAT have anything to do with his behavior? I just don’t know.
So hi again you guys.