New to the forum

[piglet3]

Hi I'm 43 years old and in June I was diagnosed with cerebellar ataxia type unknown. looking back I had symptoms as far back as 20 years ago however I am absolutely devastated by this diagnosis and am finding it difficult to cope.

[HarryB Administrator]

Hi piglet3

I am so sorry about your diagnosis. It is a lot to get your head around, I know. You will find some very positive people on this forum!

I have an idiopathic cerebellar ataxia as well. I was diagnosed when I was 15. I am 41 now. I had to retire from work a few years ago which was hard but I now know was exactly the right thing to do. Never look back or look too far into the future. Live for the day. And concentrate on what you can do, not what you can’t. You can’t control having ataxia but you can control how you manage and deal with it.

Please post here any time you need to.

Harriet

[piglet3 in reply to HarryB]

thank you so much for your kind words.

[pollybanana]

I have only been diagnosed in the last year, type unknown, and I am still trying to come to terms with it. I think we have to try and be positive although I do wonder about tomorrow. Best wishes

[piglet3 in reply to pollybanana]

thanks for your reply pollybanana

[Litty]

So very sorry to hear.

I can only speak from my own experience. It took me and my husband about a year to come to terms with the news. It was a bit like someone close dying. Soon after my diagnosis 2 very close friend and a relative suddenly died at very young ages leaving young families. I realised that ataxia is not fair but we al have to die of something and I would rather be here.

I am not a talker but some people (many of my family) have found it helps.

Good luck x

[piglet3 in reply to Litty]

thank you so much

[Klutzy]

Piglet,

What a cute screen name. While I have no dx except neuropathy, I understand how you feel you're losing control and your body is betraying you. It sucks, but all you can do is take it one day at a time and look at what you can do today. It seems like a great group here that can help you cope. Good luck!

[piglet3 in reply to Klutzy]

yes it seems a lovely positive group. just what's needed at times like these.

[Timotae]

I am newly diagnosed as well and waiting for genetic testing results. Hope we can support each other