My Ataxia journey began in 1978, following a three-month coma I experienced the year before, at age 12. Since then, I’ve faced significant balance challenges and experienced over 50 falls. It took many years before I was correctly diagnosed and prescribed medication to help manage my symptoms. Despite living with a number of diagnoses which often led others to underestimate my intelligence, I’ve remained committed to advocating for accessibility and disability rights throughout my life.
I’ve served in various community and national roles—appointed by the mayor of Magnolia and supported by organizations like the National Organization on Disability and the Pilot Club Foundation—to push for compliance with the Americans with Disabilities Act. These experiences, along with my involvement in Toastmasters and as a participant in the National Disabled Veterans Winter Sports Clinic, have helped me find purpose and continue to raise awareness for those living with Ataxia and other disabilities.
When you believe, achieve, receive success you can conquer the challenges/difficulties/disabilities to full inclusion. Using the BARS to thrive, more can be successful!
When Were You Diagnosed? Which Type (If Known)?
2017.
How Has Ataxia Impacted Your Life?
Painful pains in my legs, neck, etc.
What is One Thing You’d Like the People to Know About Ataxia?
You can conquer them, slowly as myself or quickly depending on your community.
Share Your Advice – How Can Others Support Someone with Ataxia?
Affirm their recovery skills that can benefit others!
How has NAF Helped You or Your Family?
Listened to my story as God has been with myself!
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
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…
Jacqueline Ambur
“So what we think you have is something called autoimmune cerebellar ataxia.” Cool. Cool. Cool- No idea what that is. Countless blood tests, a few MRIs and a Read More…
Judith
As a child I experienced hypnogogic states REM dysfunction and night terrors. As I go older I developed sleep attacks and falling. I went to a sleep specialist and was diagnosed w Read More…
L. Marins
I am Lucas Marins, Brazilian, 31 years old. My grandfather died with ataxia SCA3, my aunt is completely paralyzed already, my mother is 64 years Read More…
Prajakta Samant and Amit Patil
Saga of a CHAIR Prajakta Samant and Amit Patil When we hear a word “chair”, the first thing that comes to an Indian’s mind is electoral seat in politics. But don’t worry—I’m not going there today. To hell with politics. I’m here to talk Read More…
Marcus
My Mother was diagnosed with a type of ataxia 20 years ago, no one knew what exactly she had. 10 years ago, I started researching Read More…
