Help

[Debilou2]

Hi every one, I'm asking for a bit of advice, my brotherinlaw was diagnosed about 5 years ago with ataxia, I'm not to sure what type, he has been wheelchair bound for at least 18 months, his speech is very bad now and his breathing is getting worse. He has deteriorated rapidly in the last 3 months and this week has been in hospital with all sorts of problems, his bladder seems to have stopped working and he has some kind of episode last night where his body was shaking badly because his breathing was so bad. It seems like the docs don't have a clue how to treat him. Just wanted a bit of advice really, has any one else experienced these issues. It breaks my heart to see my sister so distraught.

[wobblybee]

Most ataxias are progressive, and degenerative... the speed of this can vary enormously, but some people do face similar challenges to your brother in law. If you don’t get many replies here, log onto Facebook and search for another ataxia support group..Spinocerebellar Ataxia Awareness and Research Group. Sadly, often there isn’t any specific treatment recommended, but your sister may find it helpful to read about other’s experiences in coping 🙂xB

[Debilou2 in reply to wobblybee]

Thank you very much, we didn't even know it existed until he was diagnosed. So shockingly sad xx

[hsilverman1]

You need to get a Neurologist who is an Ataxia specialist to look 👀 at your brother in-law.

He/she will know how to deal with his situation.

Good luck.

Sincerely,

HS

[Debilou2 in reply to hsilverman1]

Thank you, he is under a specialist in London, but our local hospital took far to long to work things out, he is now recovering from this latest episode and will be going to an intense rehabilitation unit for some help, hopefully they will be given some guidance now on how to manage .