Spinocerebellar ataxia type 1. Anyone here familiar with this?

[Easterncedar]

5. Not the same, but symptoms are similar

My sweetheart had a rare neurological disorder, progressive supranuclear palsy, or PSP, characterized by loss of muscle control, which affected speech, swallowing, vision, walking - everything, really - by sudden falling backwards and by memory and other mental damage.

Caregiving is hard. Very hard. I was helped by an online community based in England called Health Unlocked, which is focused on movement disorders and is organized into groups supporting sufferers of various diseases and their caregivers. It saved my sanity. I hope you can find something similar. (You might check out their website.) Nothing compares to having the advice and support of folks who are going through the same experience.

Can your brother help in planning for what comes next or does this all fall to you? Is there hospice support in your area? (Quality varies, but a good hospice agency should be able to provide appropriately increasing levels of service, beginning now with counseling and advice. It’s not just for the last 6 months, as it once was.)

I wish you and your brother the best that can be. If my experience might be any help, please send me a message, any time.