Monday, July 21, 2008


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.

Please watch this YouTube PSA about Dystonia, and visit The Bachmann-Strauss Foundation!


Dirty Butter said...

I received the same invitation to post about their organization and promote awareness of Dystonia. It is horrible to not be able to do research on something your loved one is up against.

I haven't been as speedy as you, but I do have the email marked as a keeper, and intend to write something for them.

I found out about all kinds of odd ball variations of Movement Disorders when they threw the bombshell at me last November that they did not think I had PD.

Dystonia, Dyskinesia, and Myoclonus were their suspects, and for now at least they have settled on Essential Myoclonus. It sounds horrible, but is not a progressive disease the way PD is. So I am celebrating!!

Mary said...

Dirty Butter -

It really is amazing how many movement disorders there are that most of the public has never even heard of. We are lucky in one aspect of having PD - it is a highly publicized, researched and funded disease, and scientists seem to be getting closer and closer to a cure every day.

Congrats on finally getting a real diagnosis!!!