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
Ben Williamson
Living and Dying with Spinocerebellar Ataxia Type 7: A Carer’s Perspective Affiliation: Husband and primary carer of patient with confirmed SCA7 (ATXN7 gene, 10/49 CAG Read More…
Maitreyi Viswanathan
http://youtu.be/sYccDzT25eY?si=f6GkonkY4FvsyFHy The video above is from Maitreyi’s personal YouTube channel, in which she discusses her experiences living with Ataxia. Mature topics are discussed, viewer discretion is Read More…
Ana
When I turned 20, I started to notice something was different about me. I had a brain MRI, which showed that I probably had Ataxia. Read More…
Tracy Britt
I am a Registered nurse who recently went on disability for Spinocerebellar Ataxia. My family tree is full of members with this same illness. I Read More…
Adam Zea
I have a beautiful wife and 3 grown kids. I have always been very active, running track and cross-country in high school and road races Read More…
Aude J
Note: Aude submitted her story in French. ChatGPT was used to translate her submission. The translation may not be accurate. We will include her submission Read More…
