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
Freyglee Borges
I am from Venezuela, South America, I am 24 years old and living a “normal life” studying at university. My Ataxia is quite rare. I Read More…
Cameron Dingerson
My name is Cameron Dingerson, and I have a rare form of spinocerebellar ataxia: SCA11. The impetus for me sharing my story is the upcoming Read More…
Valentina
Todo empezó a los 9 años cuando estaba en el colegio y la profesora y mi mamá se empezaron a dar cuenta que levantaba los Read More…
Denny
My name is Denny and I am 71 years old living in a small town in Northern Minnesota. I have had a diagnosis of Ataxia Read More…
Liliana Haefliger
One day, about 25 years ago, I suddenly saw double after the second sip of white wine. Then I started seeing double not only when Read More…
Dušan Stojanovich
“His Light Endures”: Honoring Dušan Through Art and Advocacy By Dr. Nanette Presswell My partner Dušan was an extraordinary person—deeply creative, endlessly curious, and full Read More…
