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
Kamal Randhawa
I have a history of Ataxia. On my father’s side, all aunts and uncles are affected, their offspring too. We all have Ataxia. I was Read More…
Bev Schmutz
Hi! I was diagnosed in 2010. I worked for a well known insurance carrier. I had breast cancer in 2008 and received Chemo therapy, radiation Read More…
Purnima
Hello everyone, I used to live away from my home in Pokhara with my 3-year-old son for my job. I was a very confident girl Read More…
Sandra B
I’m Sandra. I’m 50 years old and based in Hamburg, Germany. There are some things I found out and experienced, and for I found them Read More…
CoCo Tsoi
My name is CoCo from Hong Kong, and I am an adaptive golfer currently ranked under the World Ranking for Golfers with Disability (WR4GD). I Read More…
Big Bill
On October 21,2024 my life changed forever because my diagnosis of Ataxia. The neurologist said I had two options to go to Rochester Mayo or Read More…
