My name is Ed Schwartz. I’m co – chairman of “The Western Pennsylvania Ataxia Support Group of the National Ataxia Foundation (NAF).
Ataxia is the biggest challenge I have ever had to face in my life. About twenty three years ago I began to fall down in the dark. Then after experiencing symptom s of 6 other disorders over the next 20 years, and a seizure – like reaction to the composite collection of drugs I was taking, I wrecked my truck!
I quit driving and shortly after that attended the “Brain Conference” in Philadelphia. While there, I talked with volunteers at the NAF kiosk. It felt like I was talking to myself in the mirror!! They all had walking, coordination, and speech problems like me. We agreed I probably had Ataxia.
Upon return home I joined NAF, got another MRI along with a diagnosis of: atrophy of the cerebellum. An associate of my brother, a Doctor in Cincinnati informed me of the probable relationship between gluten and Ataxia and put me on a Dairy fee, egg free, and gluten free diet. My restless leg disorder disappeared.
I subsequently diagnosed myself as having sporadic cerebellar Ataxia. The visit to the NAF kiosk was the start of the series of diagnoses, decisions, and actions which led to an understanding of my problem. I’m not symptom free and don’t expect to be unless N AF finds a cure — but I can enjoy my life again.