Member Stories

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 – there are only a few things I despise in life. And one of them is the comment, “She’s in a wheelchair just like you Read More…

My Ataxia journey began in 1978, following a three-month coma I experienced the year before, at age 12. Since then, I’ve faced significant balance challenges and experienced over 50 falls. It took many years before I was correctly diagnosed and prescribed medication to help manage my symptoms. Despite living with Read More…

Ataxia comes as a dominant gene through my great grandfather, Ernest, my grandmother, Ernestine, and my mother, Leslie. My mother’s brother died young and we don’t know if he had it. I am the only one of four siblings who has it. My younger brother has early Alzheimer’s at 62. Read More…

I’ve been living with a genetically acquired Ataxia since birth but was only clinically diagnosed in 1992. My mother was diagnosed in 1976. Her brother had been previously diagnosed in 1974. Another brother was never diagnosed but certainly had it. In my late 30’s when I was having more trouble Read More…

I am 62 years young. I was diagnosed with SCA8 when I was 24. Dr. Byrd took a skin sample to help with other types of testing (at the time there were only five types of Ataxia that they knew of). My mother is in a wheelchair and has been Read More…

It started about 12 years ago. My dad was diagnosed with Ataxia. I wasn’t really sure what that meant, but I spent the next several years watching his steady decline. His speech slurred, his walk was unbalanced, and his fine motor skills deteriorated. In 2022, I had a horrible case Read More…

I’m Bella and from China, thanks to this platform so I could share my story here. My diagnosis was very easy, not that complicating. I went to the doctor, tell them I want a genetic test, then boom! I won the lottery. Cause I know the existence of SCA3, after Read More…

Hello Everyone, I’m a pharmacist and have been living for half a century. I learned about my wife’s Ataxia in October of this year. I must admit that I signed up for the hospital library specifically to read more about this condition, but on my wife’s genetic results, I noticed Read More…

MIRACLE OF LIFE While it’s true that man’s worst enemy has for many years been war, the war I laugh at is the war of haste—like the rush of the newspapers or the out-of-bound cars that transit our streets and become “murderers” of our own destiny. Today, even as technology Read More…

As a 28-year veteran special education teacher at Vandercook Lake Public Schools, I was looking forward to retiring in 2018. I had plans on working part time, gardening, camping, sewing, quilting and volunteering. Shortly after I retired, I began having difficulty hearing, sweating profusely, becoming easily fatigued, and easily frustrated. Read More…