Member Stories

Collective Strength During my late thirties my loss of balance was apparent. That was over 35 years ago. By my early forties, I was diagnosed with Cerebellar Ataxia. Prior to that day, Ataxia, cerebellum, and degeneration were words I never heard of. No family, friends, or public figures had this Read More…

Hello.  My name is Christie Alexander.  I have worked as an Early-Childhood educator for 21 years.  A few years ago, I was diagnosed with a rare disease called Olivopontocerebellar Atrophy (OPCA).  But wait, you may be thinking, “I thought this was a story about Ataxia?”  It is.  Being given an Read More…

Hi! My name is Ewa 🙂 I live in a beautiful and green country – Poland. I am a recently diagnosed person whose story is probably quite unique, because almost anyone is diagnosed without having symptoms. I didn’t have any signs of Ataxia, but quite a few people have Ataxia Read More…

I am 41 years old and currently live in Ashland, VA. I have SCA2. My Mom, Aunt, Grandfather and cousin all have or have had it as well. I started to feel off earlier this year and knew what to get tested for because of my Mom. I can still trail Read More…

Most of my career I lived in Texas and worked as a secretary.  After I retired, I moved to Maryland to be closer to relatives.  I’m so grateful that I didn’t have ataxia when I was working.  Here’s my story.  In 2009, I began having trouble swallowing.  Sometimes food would slide Read More…

I have Ataxia and encephalitis; Spinocerebellar Atrophy (SCA) was “identified” from a MRI in 1990.   The SCA is an evolving situation, from stumbling, to walker, to wheelchair.  I’ve been housebound for many years (the Covid virus doesn’t seem a big deal.).  Some think Agent Orange is the cause and other Read More…

I had never heard of the word Ataxia and neither had my GP. My initial diagnosis didn’t take very long but I was not told I had Ataxia; the neurologist told me I had cerebellar degeneration. When I googled it, I discovered the word Ataxia. I emailed the Neurologist to Read More…

My name is Linda, and I have been dealing with SCA3 for 17 years. I worked in the medical field for over 20 years before retiring in 2015. The progressive nature of Ataxia made it too difficult to continue working. It certainly presents challenges daily, but I try to maintain a positive attitude and count my many blessings.  First and Read More…

I was in high school when I saw Pride of the Yankees the story of Lou Gehrig. In this 1942 movie Gary Cooper played Lou Gehrig who played in 2130 consecutive games. Gherig, who had ALS, died a year before the films release. In the movie as Lou Gehrig (Gary Cooper) Read More…

I am 69. I became aware that something was wrong in 2016 when I lived in Southern California.   I started with my physician, went to an ENT had CT scans, and eventually went to UCLA. I had this strange feeling in my sinuses.    From there, I noticed that Read More…