Steve from Colorado here.
I’m a father of a boy and a girl.
I’m a geologist who has worked primarily in the computer industry.
I have SCA II.
I used to be quite active…
Within the last few years, I have become substantially disabled
I’m happy to meet everyone!.
Steve from Colorado here.
Love Colorado. Welcome!
Hi Steve, welcome I’m retired, I live in the UK, and have a son and daughter. Currently, my type is still in question…but because of symptoms I’m suspected of having a link with Episodic Ataxia.
Symptoms started in my early 40s, and I was initially diagnosed with Epilepsy. Once falls started I had additional testing, and the diagnosis was changed to Idiopathic Cerebellar Ataxia.
I can still walk, but my symptoms have progressed, eye problems in particular…
We’re happy you’re here too and Colorado is certainly a beautiful state! I have 2 brothers and 1 sister who live in different parts of it. (The other two sisters live in Washington state.) I think you’ll learn a lot from this site. Just hearing about people’s experiences and suggestions on how to navigate ataxia has been really helpful for me so far. I have an unknown cause of adult onset cerebellar ataxia and Dr. Perlman from UCLA is running tests to (hopefully) find out what type I have. Next step is vestibular testing at Legacy and genetic testing for mitochondrial disorders. It’s been quite a journey but I have hope! It is my wish that whatever you are feeling on a particular day, to know that you have that same hope too. We’re all in this together–to lift each other up and learn how to thrive in spite of the ataxia!
Greetings… I live in the east of England and 79 years old.
I have a presumed diagnosis of Idiopathic Cerebella ataxia.
I have had all the testing available and monitored for deterioration.
However, I refused further testing at 70 years old. I appreciate that testing and monitoring is necessary for meaningful statistics but feel that I have done enough since I was almost 60 when the tests started. Healthy diet, weight control, daily exercise with music, paced energy and positive thinking are the things that keep me going. Stay safe and dont forget to smile
Welcome to the group and the amazing people who participate. I hope you find the support, encouragement, and genuine empathy I have found with these fellow trekkers from around the world!
I am 79, live in Raleigh, North Carolina and have hereditary ataxia (untested). Symptoms started around age 50.
Welcome. I have SCA2 too. I’m the mother of two high schoolers - boy and girl.