I am 38 years old and from Belgium. I was recently diagnosed with cerebbelair Ataxia but I have no idea on the type. I am scared about quality of life and life expectancy.
I cannot drive because of this and have lost my job. As far as I know, there are 0 support groups on Ataxia in Belgium or the Netherlands so you guys are all I’ve got.
Hi welcome
Ataxia does have a big impact on day to day life…I had to stop driving too,.
It can be very variable. There are numerous types, all have the same basic symptoms but there can be a huge variation in severity of symptoms and progression depending on the type. And…even in families diagnosed with the same type, sometimes symptoms and progression is experienced differently.
It is important to be tested, to see if you correspond with a specific type of ataxia. It helps to know this because…your Neurologist would notify you of any Research findings related to improvement. And, for people who have yet to plan having children…there are steps you can take to avoid passing on a genetic disease.
You can find a lot of reliable information on www.ataxia.org (The National Ataxia Foundation). And their Webinairs, often hosted by Specialist Neurologists, are very helpful. These Webinairs often give the opportunity to ask questions.
It has to be said, Facebook Ataxia Support Groups can be useful…there is regular interaction…and any good news is quickly passed on.
Just to say hi. I hope you find suggestions reassuring. You are not alone. My Cerebellar ataxia was diagnosed in my late 50s and 80 now. Daily exercise especially first thing, music and healrhy food will help. Stay safe and don’t forget to smile x