As a child, in the 1969’s-1970’s, I can remember my paternal grandfather walking with a wide, somewhat unbalanced gait. He was born in 1896 in rural Michigan, and never diagnosed with a specific disorder. I just thought his problems were due to normal aging. My father, born in 1924, starting showing similar problems with balance and gait in his 50’s. It was not until the mid-1990’s that my father’s condition was identified as a specific disease: Spinocerebellar Ataxia. I was caregiver to my father, along with a brother, during his later years. It never once occurred to me that I would one day be diagnosed with this same condition.
When Were You Diagnosed? Which Type (If Known)?
SCA 3 – 1995
How Has Ataxia Impacted Your Life?
I can no longer drive and have double vision. I can no longer sing (Contralto) because I cannot sustain pitch. My fine motor skills, writing in particular, are declining.
What is One Thing You’d Like the People to Know About Ataxia?
There is hope, so remain positive and flexible.
Share Your Advice – How Can Others Support Someone with Ataxia?
Fully understand what true accessibity means; be prepared to make accomodations for those with balance challenges; SCA is a progressive disorder, which means abilities will decline over time.
How has NAF Helped You or Your Family?
It is good to connect with a community of patients with a similar diagnosis and have regular access to experts in the field, as well as be kept aware of new developments in treatment.
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
Cameron Dingerson
My name is Cameron Dingerson, and I have a rare form of spinocerebellar ataxia: SCA11. The impetus for me sharing my story is the upcoming Read More…
Valentina
Todo empezó a los 9 años cuando estaba en el colegio y la profesora y mi mamá se empezaron a dar cuenta que levantaba los Read More…
Denny
My name is Denny and I am 71 years old living in a small town in Northern Minnesota. I have had a diagnosis of Ataxia Read More…
Liliana Haefliger
One day, about 25 years ago, I suddenly saw double after the second sip of white wine. Then I started seeing double not only when Read More…
Dušan Stojanovich
“His Light Endures”: Honoring Dušan Through Art and Advocacy By Dr. Nanette Presswell My partner Dušan was an extraordinary person—deeply creative, endlessly curious, and full Read More…
Marius
My Ataxia Journey: Sailing Uncharted Waters My name is Marius, and I live in Romania. I’m 64 years old, and I’ve always been an active, Read More…
