Hi Sparky!

Smokey's parents were both very good hunters, but I can't hunt anymore due to my condition. I have never set foot it that doctor's office again! The thing of it is that he had been my doctor since I was in junior high. I (over 30 years) I had never really had a problem with him until this incident. He was completely in the wrong with the way he handled giving me his diagnosis.

I've got a new GP who is wonderful. I have a very good neurologist at Henry Ford Hospital in Detroit. He is an ALS specialist, but he is the one that determined I don't have ALS, but Late Onset Tay-Sachs disease.

I am currently enrolled in two natural history studies for LOTS. One is at the University of Minnesota - Minneapolis, and the other is at the National Institute of Health in Bethesda, Maryland. We're doing everything we can, and I'M NOT GIVING UP!