I’m actually reluctant to tell my story as it’s far from positive.
Currently my tremors are more disabling than my balance issues, which are dreadful. I suppose I noticed things weren’t quite right about 10 years ago. I was diagnosed with Cerebellar Ataxia about 2 years ago, and to be honest it’s all I ever think about. Clearly things could be worse and I am grateful that I was more or less ok until I was 60.
I fret for my wife and family as much as myself. I think it’s because of the tremors that things seem dire, brushing my teeth is the hardest thing I do all day. I feel like a dog, as I can’t feed myself and struggle to dress. I’m sure others feel as I do, and I think my story is just as valid.
Each night I go to bed hoping that I will feel better in the morning, which I don’t. I hope I never lose this belief. I used to be a photographer, but I can no longer hold a camera. On a positive note, I do sleep well and am in no pain. I do enjoy reading other stories and journeys, finding parallels with my own.
When Were You Diagnosed? Which Type (If Known)?
2022. Cerebellar Ataxia.
How Has Ataxia Impacted Your Life?
It has wrecked my life, and my wife’s.
What is One Thing You’d Like the People to Know About Ataxia?
That it can affect anyone and that the consequences can be devastating.
Share Your Advice – How Can Others Support Someone with Ataxia?
Be there for them.
How Has NAF Helped You or Your Family?
Awareness.
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
Jerry’s Story
I’m actually reluctant to tell my story as it’s far from positive. Currently my tremors are more disabling than my balance issues, which are dreadful. Read More…
Parna Mukherjee
I was born in a family with SCA2 back in India. My father had the symptoms of Ataxia as well as all his five siblings. Read More…
Jency W
I got diagnosed at 40 after always walking awkward and 2 years of being unsteady. Now I’m going to start physical therapy and apply for Read More…
The Ruehl Family
When Charlie Ruehl was in high school, his mom Susan recalls he would always miss the same step at the bottom of their staircase. She Read More…
Carol Paige
My unwanted guest arrived when I was conceived. He rode in on my DNA and set up residence in the part of my brain called Read More…
Tom Lawson
My name is Tom Lawson and I am 46 years old, married with three children and a dog. I was diagnosed with Cerebellar Ataxia six Read More…
