About Dystonia - the best resources I've found

As some of you may remember, my official diagnosis is either Early Onset Parkinson's with dystonia that responds to dopamine or Late Onset Dopamine Responsive Dystonia with Parkinsonisms. Either way, the treatment is the same and they are both progressive neuromuscular disorders. The latter is less progressive than Parkinson's, but it is progressive.

And regardless of the diagnosis, I'm also a part of the Insomnia Club, at least part of the time. This is an exclusive club to which many people with Parkinson's and Dystonia belong and it consists of informal online meetings anywhere between 1 and 5 am. It was during one of these meetings that I found the following articles and news segment about Dystonia.

The first describes a typical dystonic storm and, for those of us who experience this, how to tell the difference between a dystonic storm and just a worsening of symptoms. The author, Tom Seaman, has probably the best blog out there about dystonia. Once I started reading his articles, I had a hard time stopping. 

What Really is a Dystonic Storm

The next one is an unusual story about a woman who was diagnosed with cerebral palsy as a child and lived with that diagnosis for 33 years before learning she had Dopamine Responsive Dystonia. At 33, she finally started taking levodopa. Suddenly she was able to run and play with her children, go on hikes, and drive a car. Jeanne Sharon Abbot has written a book about her experience and maintains another amazing blog about Dystonia. In doing this, she has helped at least 20 other people who had been misdiagnosed as she was. This is why we blog about our experiences.

Woman misdiagnosed for 30 years

and her blog: www.jeanabbott.com.

It's so good to see this information out there. Dealing with Parkinson's is one thing. People understand what it is, to a degree, or at least they've heard of it. While I definitely have Parkinson's symptoms, dystonia has always been my major challenge. It's a lot harder to explain. It's harder enough to explain that I told my neurologist I wasn't interested in having a DAT scan to confirm my PD diagnosis. She understood. She said she only had one other patient whose symptoms were close to mine. With PD, there's a huge community out there. With Dopamine Responsive Dystonia (DRD), I'd be a community of one.

Except between the hours of 1 and 5 am when the Insomnia Club meets.

Oh, and before I go, there's another aspect of Dystonia which I find most frustrating. There is a type of dystonia which is called Functional Dystonia and is considered to be psychogenic. I know this is real and I don't discount it at all, however, in one case I know, a woman was denied her treatment when her doctor decided it was all psychological. As women are diagnosed with dystonia 3 times more frequently than men and, we women know doctors (at least in the past) have been quick to attribute our symptoms to anxiety, depression, and just being female, I just get a little suspicious when I hear about it.

In looking up information about psychogenic dystonia, it seems the docs have gone back and forth between considering all dystonia to be psychogenic or all dystonia to be organic. Now, there's a blur between them and that's all right. I suspect there's some psychogenic and organic elements to nearly all physical challenges. 

Which brings me to another wonderful article by Tom Seaman:

Dystonia and the Highly Sensitive Person

Dys-what?

I know there's been a lot of changes in the field of dentistry in the last decade, however, when did someone decide it was a good idea to have patients close their mouth over the blasted suction tube? This first came to my attention several years ago when I was going to a respected periodontist to have my teeth cleaned. That was the day their office learned the meaning of the word, “dystonia”. As soon as my lips closed over the tube, my whole body twisted and contracted into a pretzel. It doesn't make teeth cleaning very easy, especially as I couldn't open my mouth to let go of the tube.

At this point, my dentist is very understanding and so are most of his assistants. Every once in awhile, there's someone new working with Dr. Sherman and I have to explain all over again. Actually, all I'm able to do is shake my head vigorously and refuse to close my mouth. Invariably, they give me their best patient look. Obviously, this patient isn't all together. They repeat their request at least twice until I finally awkwardly attempt to speak, despite the suction tube which is still waiting for my lips to close around it.

“Ah cand,” I tell the assistant, confirming his/her opinion of my intelligence.

I get a puzzled look in return. If I'm lucky, this is when the assistant will take the suction tube out of my mouth so I can speak more clearly – or at least as clear as I can when half my face is numb.

“I can't,” I explain once more, “it triggers my dystonia.”

“Dys – what?”

I used to try and explain my dystonia to people. Lately, I simply tell them I have Parkinson's disease. Then they smile and nod. They don't really understand, but it's a recognizable diagnosis. It's what Michael J. Fox has, and everyone knows Michael J. Fox. I realize this is a cop-out, but I rationalize it because I've already been sitting in the dentist chair for 3 hours and I don't want to take up any more time than absolutely necessary.

There is a lot of websites about Parkinson's disease on the internet and for this reason, I have chosen not to have specific medical information about PD in my journal. I hadn't intended to include medical information about Dystonia, but perhaps it would be a good idea. The dystonia community is much smaller and they don't have celebrity spokespeople to make sure everyone is aware of this disorder.

Someone on our online dystonia support group suggested we try to recruit a celebrity who has dystonia to speak up for us. I offered then, but was turned down. My celebrity status isn't quite up there with Michael, Mohammed Ali, Davis Phinney, and all those other folks.

More information will follow soon, and I invite anyone from the dystonia community to give suggestions for what to include. If there are any links to websites that have been particularly helpful, I'd like to include them here.  

Feel free to share any of this information with your dentists and their assistants.