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
Jorge Alonso
My name is Jorge Alonso, I am 33 years old I was diagnosed with ataxia at 31 or 30, although I really felt the disease Read More…
Abdulrahman
Hello, I’m Abdulrahman – in the beginning I was shocked, but then I digested the news, my lifestyle and way of living really helped me Read More…
Ben Williamson
Living and Dying with Spinocerebellar Ataxia Type 7: A Carer’s Perspective Affiliation: Husband and primary carer of patient with confirmed SCA7 (ATXN7 gene, 10/49 CAG Read More…
Maitreyi Viswanathan
http://youtu.be/sYccDzT25eY?si=f6GkonkY4FvsyFHy The video above is from Maitreyi’s personal YouTube channel, in which she discusses her experiences living with Ataxia. Mature topics are discussed, viewer discretion is Read More…
Ana
When I turned 20, I started to notice something was different about me. I had a brain MRI, which showed that I probably had Ataxia. Read More…
Tracy Britt
I am a Registered nurse who recently went on disability for Spinocerebellar Ataxia. My family tree is full of members with this same illness. I Read More…
