Hi I am a 62-year-old Indian male living in New Delhi, India. My discovery of Ataxia was quite by accident. I suffer from Essential Tremors and the doctor suggested a gene test about 15 years back. The SCA 12 gene was dominant, but since it was more an ET diagnosis, I forgot about it. About 2 years back, I got an MRGFUS done. It is after that, that my ataxia increased. Currently, my gait ataxia has increased and I use a rollator to move around. I also have voice tremors, which have impacted my speech.
When Were You Diagnosed? Which Type (If Known)?
Father and grandmother. Gene testing was not known then.
How Has Ataxia Impacted Your Life?
Yes. I cant walk without a walker, dance or have independent movement. But I am a national level swimmer and swim effortlessly.
What is One Thing You’d Like the People to Know About Ataxia?
Go to a good neuro physio.
Share Your Advice – How Can Others Support Someone with Ataxia?
Patience.
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
Finding Connection at the 2025 Annual Ataxia Conference
Submitted by Mark Holdenried Attending the 2025 Annual Ataxia Conference (AAC) in Las Vegas was a meaningful and energizing experience. From the travel experience to Read More…
Lim Siah Gim
My challenge and journey with Ataxia I was born youngest in a family of 11. From teen I witnessed my father (who was about 50 Read More…
Shawn Davis
Why I Wrote a Children’s Book to Explain Ataxia Well, it turns out your brain’s cerebellum is super important… A couple of years ago I Read More…
Roberta C
I am the mother of a child with SCA (type 14). My daughter who is now 12 had her first symptom when she was 5. Read More…
Ken
My Ataxia journey started some years ago. Even before I was diagnosed, my wife commented that I walked like “Tipsy Mc Staggers”, and I had Read More…
Julie Guillot
My name is Julie Guillot, and my son, John, has Ataxia. John’s journey began on January 19, 1998, just a few weeks after he was born. As Read More…
