I have it too. I don’t think there is any cure or help for us. Mayo Clinic in Jacksonville showed me an x ray of my decreased cerebellum and suggested it was genetic. Had genetic test and it’s not genetic. Then why? I have been offered no hope or explanation. I have always lived a healthy lifestyle- walked every day, good heart and kidneys, no smoking or alcohol. Strange about the silence from doctors. Makes you mad, doesn’t it? No answers. I simultaneously developed Hydrocephalus (no reason given. Had a shunt placed in brain. Thinking got clearer but ataxia is worse. I tried stem cell therapy, but won’t know if it will work until October, since results come 6 months after treatment. My heart goes out to you and I would love to hear from you. The idea of slowly declining with no help on the horizon, and assisted suicide illegal, is beyond my idea of horrible. And yes, you sure do feel alone. Please let me know how you are.