I was diagnosed with SCA1 in 2010, five years ago I had to stop work due to it becoming too hazardous, I lost my ability to do everyday tasks like washing my car or cleaning the gutters, I cannot print or write anymore, sometimes my ability to sleep is compromises, my depth perception is gone, it is very hard to navigate stairs, my balance is gone, sometimes my speech is garbled, eating with a fork or spoon is hard, the same goes for drinking, I have had to give up my hobbies reflexes are very slow.
When Were You Diagnosed? Which Type (If Known)?
SCA1 in 2010
How Has Ataxia Impacted Your Life?
Five years ago, I had to stop working because it was becoming unsafe.
What is One Thing You’d Like the People to Know About Ataxia?
It causes behavioral changes each and every day, no two days are the same.
Share Your Advice – How Can Others Support Someone with Ataxia?
Be patient, due to these changes caused by SCA1 it takes me longer to do certain things.
How has NAF Helped You or Your Family?
This is the first time I have gone on this site, I hope to bring awareness of this disease.
Disclaimer: The views and opinions expressed in this story are those of the individual member and do not necessarily reflect the views of the National Ataxia Foundation (NAF). Any medical information shared in this story is based on personal experience and has not been reviewed or endorsed by NAF or a medical professional. Always consult with your own physician or qualified healthcare provider before making any changes to your care or treatment plan.
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

Sandy Wilson
I was diagnosed with SCA1 in 2010, five years ago I had to stop work due to it becoming too hazardous, I lost my ability Read More…

Rochelle
Hi, I’m Rochelle I am 60 years old mother of three adult children and grandmother to 3. All of my life even as a teenager Read More…

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…