I recently received an email from Renee on behalf of The Bachmann-Strauss Dystonia & Parkinson Foundation, Inc. I was asked to post on my blog their PSA about Dystonia, of which I said I'd be happy to oblige after doing some research on the topic. Well, there just isn't any information to be found.
Dystonia is similar to PD in that it is a neurological muscle disorder. However unlike PD, Dystonia is not well known to the public. The medical community itself knows little about the disease as research is extremely under-funded. While thousands of adults AND CHILDREN have Dystonia, most never receive a proper prognosis.
Dystonia causes uncontrollable, painful spasms in the body. It can affect the face, neck, throat, eyelids, arms, legs or torso. More people in North America have Dystonia than have Muscular Dystrophy, Huntington's Disease, and Lou Gehrig's disease combined. That is a staggering statistic!
I know what it's like to have a husband with a neurological disorder. I have spent countless hours pouring over medical journals, books, the Internet, pamphlets and brochures just to get ANY information I can. Many times I walk away frustrated because I could not find the information I was looking for. I can not imagine having Dystonia or someone I care about having it, and not being able to research it. It it just terrible that not enough is being done to get the word out about this devastating disease.