The first sign something was not right was in 2012, when I found I could not carry a cup of coffee across an open space without spilling it. It took over year to get a diagnosis, and I was told there was no cure, or even treatment. Physiotherapy was recommended. Since then, my quality of life has steadily declined as symptoms worsen. However, I have improved my fitness, supported research where I can and found that while the balance neurons decay the processor ones still work. This means that I can still be useful if thinking is required while I am not much use if mobility is needed.
When Were You Diagnosed? Which Type (If Known)?
I was diagnosed in 2013 with SCA6.
How Has Ataxia Impacted Your Life?
My Cerebellar Ataxia is Hereditary and progressive. Balance and coordination steadily deteriorates, as of April 2025 I am using rollators outside and a wheelchair indoors. Speech is worsening, but still understandable.
What is One Thing You’d Like the People to Know About Ataxia?
Fitness is important as mobility declines. Exercise!
Share Your Advice – How Can Others Support Someone with Ataxia?
Join a support group! It is good to mix with others that do not ask for or need explanation about Ataxia.
How has NAF Helped You or Your Family?
The webinars are very useful.
What is Your Ataxia Story?
As an organization dedicated to improving the lives of those affected by Ataxia, we believe that each story has the power to inspire, connect, and empower others. We invite you to share your personal Ataxia journey with us.
Are you here to read the personal stories, but haven’t yet joined as a member? We hope you find comfort in reading about the experiences of others on their Ataxia journey. We invite you to join as a member to receive a new member story each month. It’s free, and you’ll be kept up-to-date on the latest developments in the Ataxia community.
Recent Member Stories
Susan Harding
I’ve been living with a genetically acquired Ataxia since birth but was only clinically diagnosed in 1992. My mother was diagnosed in 1976. Her brother Read More…
Keith Heiken
I am 62 years young. I was diagnosed with SCA8 when I was 24. Dr. Byrd took a skin sample to help with other types Read More…
Sarah Altis
It started about 12 years ago. My dad was diagnosed with Ataxia. I wasn’t really sure what that meant, but I spent the next several Read More…
Bella
I’m Bella and from China, thanks to this platform so I could share my story here. My diagnosis was very easy, not that complicating. I Read More…
Michal
Hello Everyone, I’m a pharmacist and have been living for half a century. I learned about my wife’s Ataxia in October of this year. I Read More…
Christian Lopez Trenche
MIRACLE OF LIFE While it’s true that man’s worst enemy has for many years been war, the war I laugh at is the war of Read More…
