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
William Tartaglia
My story started about four years ago. It has been a long road. Finally on the 13th of August 25 I was diagnosed with Ataxia Read More…
Sarah FitzGerald
In June 2024, I had a massive hemorrhagic stroke caused by an AVM. I was 23 at the time and working out at the gym. Read More…
Luís Frija
I’m 50 years old from Portugal and work in the contact center industry from home. My journey with Cerebellar Ataxia really began in 2018 when I received my Read More…
Amir
My name is Amir Hossein Bagerzade. I am 26 years old, and for nearly nine years I have been living with a rare genetic disease. Read More…
Jacqueline Ambur
“So what we think you have is something called autoimmune cerebellar ataxia.” Cool. Cool. Cool- No idea what that is. Countless blood tests, a few MRIs and a Read More…
Judith
As a child I experienced hypnogogic states REM dysfunction and night terrors. As I go older I developed sleep attacks and falling. I went to a sleep specialist and was diagnosed w Read More…
