I have Spinocerebellar Ataxia type 2. Also known as SCA2. I was 47 years old when I was diagnosed. I already knew that I had it, because I have a family history of it. My mom had it, her mother had it, my mom’s sisters and one brother all had this disease.
I am married with one daughter. I recently went back to school and received my medical billing certificate. Three years ago I noticed my stamina changed and the way I walked changed. I pointed it out to my doctor and he waited me to get tests done to see if I had neuropathy, since I am a type 2 diabetic and it took some time to get my blood sugar under control. But come to find out having neuropathy is one of the side effects of this disease. I was in denial for 3 years, and my mother told me to never get tested, just live and enjoy life. But I needed to know. So I went to my doctor and he suggested a neurologist. From there I found a genetics specialist. I am so grateful that my mom keep a medical general so when I got tested they knew exactly what to look for.
Two months later here I am. I have finally accepted my disease and embraced it. I am still able to get around, I just have to rest while cooking or washing the dishes. I no longer do my own laundry because I can’t carry the laundry basket downstairs anymore. But I love to do my nails and I love to crochet. I am even thinking about selling my crochet on Etsy. I am still working and doing my daily activities.
When Were You Diagnosed? Which Type (If Known)?
2023. SCA2.
How Has Ataxia Impacted Your Life?
I can park in handicapped parking now. I had to face reality that my body works differently now. I have to rely on others for help. I hate the fact that I have lost my independence.
What is One Thing You’d Like the People to Know About Ataxia?
Be kind to others and if you see someone struggling offer them help. Parents and caregivers be patient with your love one. Allow them grace and understanding. Because this disease is hard to deal with.
Share Your Advice – How Can Others Support Someone with Ataxia?
Having Grace.
How Has NAF Helped You or Your Family?
Just knowing that their are others in this world going through the same things that I am. And that I am not alone.
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.
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Shaun Wesley Best
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 Read More…
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…
