My husband was diagnosed with SCA about 6 years ago. He's now just 50.
They haven't been able to identify the affected gene but his neurologist is clear that's it's SCA.
When I met him 20 years ago he was a runner. Now he walks with 2 sticks. In the last two years he's had one fall that resulted in a fractured skull and brain bleed then almost 2 years to the day later he fell and fractured his hip. He's only just off crutches (having fallen last Summer).
We have 2 daughters. I fear the implications for them in the future. I fear where this disease is going for my husband.
He has dystonia (Botox injections in his arms to treat this caused a loss of fine motor skills in his hands), nystagmus, poor gait (people think he's drunk), mood swings...
I'd be grateful for any advice and insight any of you have.
He attended at the John Radcliffe Hospital about 4-5 years ago to take part in a study there. We've heard nothing since. I suspect the funding was pulled. SCA does not affect enough people to justify funding apparently.
I look forward to hearing from some of you