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
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…
Sandi G
I am pleased to share some exciting news with you. I am a 67-year-old woman with a diagnosis of SCA8, and for the first time Read More…
Thomas Hudson
I’ve had balance and coordination issues my whole life – but I really started noticing it 10 years ago. I think the stress of myself Read More…
Tyler
My grandmother died prematurely from ataxia when I was just a baby, 26 years ago. Now today, my aunt has severe SCA and my mother Read More…
Tracy B
My paternal grandfather had a wide gait and difficulty walking and talking. We were told it was like “hardening of the arteries in the brain.” Read More…
Pinalben “Pinky” Patel
A Wheelchair is Not The Endgame By Pinalben “Pinky” Patel I’m sorry, but I don’t consider wheelchair users disabled. I am a very happy person Read More…
