I don’t have episodic ataxia (at least I don’t think I have) but I’ve just had a bout of some sort of ataxian stroke. It was like a stroke but mostly on my right while a usual stroke is left (I think) Things are slowly coming back to ‘normal’ though the new normal might be ??? It’s all happened before so I know what it is: ataxia rather than a classic stroke. A doctor I saw at that time said it was my cerebellum crumbling away - a lovely description!
I’ve seen other people make comments re one side of their body is more affected than the other, but no-one came up with a precise explanation. It does seem a logical answer from your Neurologist, but not exactly what you want to hear !
Hee hee. No it’s not! But do you find yourself laughing at things? Not everything but a lot of things. I think a crumbling cerebellum is a huge laugh. My mum used to say “Laugh and the world laughs with you. Weep and you weep alone.”
Yes, I tend to laugh at inappropriate things…a bit embarrassing at times
I hope that you have a new doctor. A neurologist that I saw at first told me that his diagnosis was “Ataxia! Ataxia!” but he provided no further information. He is a good doctor with no people skills. So look for a doc that will help you understand your diagnosis.
Well at least your neurologist knew it was ataxia. I’m not sure mine would know if he hadn’t been told by his predecessor. His predecessor was actually a neuro-surgeon - a bit higher up than a neurologist.
I have since joined an ataxia support group, which has been very helpful. The NAF (National Ataxia Foundation) has a listing.
For anyone in the UK who is interested in a local support group, links can be found on www.ataxia.uk.org
Due to the current restrictions it isn’t possible for any group to meet in person but, some groups hold meetings via Zoom, and it’s always possible to keep in touch by email, FaceTime or phone
I keep wondering about you and ataxia uk Beryl. How are you able to be so involved with them, when you are so far away?
It’s like being in the same room when you can email or speak on the phone