Skip to content

The Ataxia Community Comes Together in Orlando April 9–11, 2026 for the Annual Ataxia Conference! LEARN MORE

Keith Heiken

I am 62 years young. I was diagnosed with SCA8 when I was 24. Dr. Byrd took a skin sample to help with other types of testing (at the time there were only five types of Ataxia that they knew of). My mother is in a wheelchair and has been since she was 60. My brother is dead from brain cancer ( related?). I believe that my being very active has kept me from the wheelchair for now. I have two girls who are are married with children. Our girls both have minor signs of this horrible disease. I am currently married now it has been 41 years .

When Were You Diagnosed? Which Type (If Known)?

SCA8. VA Hospital. Seattle, Washington. Dr. Byrd. 1983?

How Has Ataxia Impacted Your Life?

I test gravity a lot and take it from me it still works. I also dance unexpectedly. Other than that I try to keep going as much as I can.

What is One Thing You’d Like People to Know About Ataxia?

I am not drunk, I may be slower but I’ll get there. If I need help I’m not afraid to ask.

Share Your Advice – How Can Others Support Someone with Ataxia?

Be kind. Give EVERYONE a break. We all have problems you know nothing about.

How has NAF Helped You or Your Family?

It has given me and my wife a sounding board to use when needed. We have also been able to get information when we want it. Ataxia is so little understood.

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

J.C. Myers

Ataxia comes as a dominant gene through my great grandfather, Ernest, my grandmother, Ernestine, and my mother, Leslie. My mother’s brother died young and we Read More…

Susan Harding

I’ve been living with a genetically acquired Ataxia since birth but was only clinically diagnosed in 1992. My mother was diagnosed in 1976. Her brother Read More…

Keith Heiken

I am 62 years young. I was diagnosed with SCA8 when I was 24. Dr. Byrd took a skin sample to help with other types Read More…

Sarah Altis

It started about 12 years ago. My dad was diagnosed with Ataxia. I wasn’t really sure what that meant, but I spent the next several Read More…

Bella

I’m Bella and from China, thanks to this platform so I could share my story here. My diagnosis was very easy, not that complicating. I Read More…

Michal

Hello Everyone, I’m a pharmacist and have been living for half a century. I learned about my wife’s Ataxia in October of this year. I Read More…

Translate »

Join the Ataxia community today!

Become a free member for exclusive content from NAF.