First DYT1 Memory

 

            Isn’t it strange the things we do remember, and the things we don’t?

            I recall coming home from seeing a doctor at Western Carolina Center, and my parents talking excitedly in the front seat. Just a snippet of memory, but this one I know is correct.

            My brother spent a year of his life at this place. (My parents were following the advice of the doctors to even take Dale there.) I KNOW the name of his doctor, a psychiatrist, but I won’t share that information because his diagnosis was wrong. So wrong. And Dale suffered for it. This same doctor said I must be copying my brother, just as a close cousin had before me, and my brother was “copying” my father, as he had a slight limp in the same leg. Wrong! Wrong! Wrong!

            When this doctor said that, my mother came out of her chair and told him that we would see the next neurologist they had coming to Western Carolina Center. Mom said she didn’t usually talk, but she knew something was terribly mistaken with the diagnosis, and she had enough.

            Maybe a week later, we all went to see a neurologist and he examined the three of us. I don’t recall his name. I wish I did because he saved me from going to doctor to doctor as my brother and cousin had. After another week, he had an answer. It was dystonia. Dystonia was a rare disorder, and he only found it by ruling everything else out. Also, he was from Lebanon and had seen it there.

            As you can imagine, my parents were thrilled! They knew what was causing my father’s limp, my brother and cousin to use crutches, and me to walk on my toe! If they had a cause, surely there was a cure! Or at least something to help, right?

            Unfortunately, they were wrong.