Anyone else with Cerebellar disorders/ Degenerative disorders.

[Amieesmum]

My daughter has just been diagnosed with Cerebellar Atrophy, although the cause is yet unknown. She has a whole list of symptoms, Inc Ataxia, Nystagmus, seziures, & she's hearing impaired too.
She was perfectly healthy 2 years ago & now can hardly walk, struggles talking, and can't remeber things she did 5 minutes before
Just wondered if anyone else has any experience of a progressive ilness. It's all a bit frightening atm.

My daughter's condition is clearly degenerative, but of unknown cause, just like yours. Her symptoms are multi-system, but I can definitely relate to the stress of watching them lose what they had.

One of the best things we did for her was to accept a referral for palliative care - it allows you more ability to speak for her quality of life, and you can be more selective about what interventions you agree to and what you avoid.

Hugs, this is definitely a frightening road to walk.