This is a copy of an email I wrote to CNN.Com regarding an article I read in their Health section:
"I was very interested in reading the article in your Health section today about an extra gene being a possible
cause for Parkinson's; however, one sentence really caught me off guard. The article stated "Incurable and always fatal,
Parkinson's affects an estimated 500,000 Americans." I am so glad I didn't come across a sentence like this two years ago
when I was first diagnosed with parkinson's at 34 and I really hope my children don't read this article either. I find
that one sentence goes against so much I've learned about the progression of my disease. Even my own neurologist told
me "people usually die WITH Parkinson's, not from Parkinson's". I'm sure before the discovery of drugs like levodopa, mirapex,
requip, permax, comtan, stalevo, among others commonly used to treat Parkinson's these days, people did receive an eventual
"death sentence" with Parkinson's Disease. Now, I like to think we are only living with a "life sentence". Certainly
my quality of life is affected; I recognize I may have to take medications forever to help improve that quality, but I certainly
don't consider my days numbered. While the study featured in the article gives rise to hope that a cure is just around the
corner, that one sentence exemplifies the lack of compassion and understanding people truly have for Parkinson's Disease.
I am sure that many of my friends in my Parkinson's Support group would feel the same way. We aren't dying with Parkinson's,
we're LIVING with Parkinson's."