Cerebral Ataxia

[kimbolita]

An adult family member has just been diagnosed with this.

I've read a few nhs/mayo links about it. Doesn't look good.

Does anyone have any knowledge/experience of this condition?

I want to know everything, please don't sugarcoat.

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Could you tell us the age of your family member? And do you know what type it is- aquired, hereditary or idiopathic?

I had a family member diagnosed with Ataxia aged 51, she lived to 64. Hers was acquired Ataxia as it occured as a result of a stroke. Physio, speech and language etc helped her and for a few years before she died she was fairly active (walked every day with a walker frame, could live with no carer support other than her husband, bathed, dressed and toileted independently, though she used incontinence products she could change them herself). She had hand tremors, slurred speech and needed some meds to help with bladder and bowel problems. She could hold conversations, make herself a cup of tea, feed herself etc.

From what I know (I'm not a med professional, just have some experience of it) some people can be made comfortable but not as they were, others can make good progress with coping with it.

Unfortunately it's not something that can be cured or even made to almost disappear. But it's not an immediate death sentence for most.

FIL has this. In his case it is hereditary. He was diagnosed in his early 40s and is 63 now. He has just this last year started using a wheelchair. His speech is slow and quite slurred but he can have a conversation. He is able to do a lot of things independently (dressing, showering etc). Happy to answer any questions you might have.

Thanks both. Relative is 63. It's believed to be acquired, quite sudden onset.

Hi @kimbolita I'm really sorry to hear about your family member.

Do you have any idea what type of ataxia they have? The prognosis can vary quite a lot depending on the type of ataxia. I'm sorry you're facing this, it is quite overwhelming and scary to look at the various possibilities and it doesn't help that not many people have heard about it so there is very little understanding.

My DH has ataxia. It was a very long route to diagnosis, and at times it was terrifying and it felt quite bleak so I can understand a little about how you're feeling.

In DH's case, now that he has been referred to an ataxia specialist things are much better (in part because he feels like less of a medical mystery!). He is taking medication to minimise symptoms which is working well for him and has made such a difference to his life. He is being monitored and the prognosis looks pretty good (obviously these things are never certain and much is still unknown, but it's certainly better than our worst fears) . Just having a name for his condition after such a long journey of worry has helped us immensely (on a practical level he is now able to drive again (with a driving license subject to review every few years), and his employers have been very understanding now that he can explain what's going on).

There's a good source of information here, as well as a helpline:
www.ataxia.org.uk/

Happy to answer any questions.

Thank you, this is all very useful. They're still trying to find out what caused it but it's suspected that it was a stroke.

It sounds very scary reading medical sites about it.

My GM had this, late onset idiopathic cerebellar ataxia, unfortunately she did end up not being able to use a knife and fork and had to be careful around swallowing - the ataxia society might be able to provide useful information, she lived until 77.

We're all thinking the worst at the moment.