September is Dystonia Awareness Month

A photo of me from an article about my fundraiser for the Dystonia Medical Research Foundation.

As part of Dystonia Awareness Month, I’m telling my own dystonia story (sans description of my fundraiser, which happened in May 2009).

My dystonia story started after I had a stroke in 2004. I was a very healthy specimen of 48-year-old woman. I exercised regularly, had low blood pressure, and great cholesterol levels. In short, there was no reason whatsoever to imagine I might have a stroke.

What happened was I had what’s known as an ASD (or atrial septal defect), which you can read about by clicking this link. After a hysterectomy, a blood clot formed and it went through the hole in my heart and right up to my brain. And so I had a stroke.

I recovered fully from the stroke within weeks. Actually, I was able to move my left side within hours, but needed physical, occupational, and speech therapy to remedy small weaknesses in my left hand, foot, and mouth.

I was fine until about five or six months later (in spring 2005), when I noticed my left hand fingers were clenching. It started with my pinkie and moved to my other fingers. Now, my left hand clenches all the time. Except, apparently, when I’m asleep, according to what I’ve read—since I’m asleep I can’t really know first-hand (no pun intended), can I?

I also developed dystonia in my left foot—which reminds me, I’ve never seen that movie—anyway, the toes in my left foot clench constantly. Oh, well, right?

The only known treatment for dystonia caused by stroke is to get Botox shots. And I have tried myriad other alternative treatments, which don’t cure the condition (because nothing does) but do (sometimes and fitfully) “manage” it.

After years and years of going to different doctors (who have all been awesome, by the way), I’m now going to the National Institutes of Health in Bethesda, Maryland to get my Botox shots.

The atrium reminds me of a Hyatt Hotel.

Here’s a wall.

They still don’t do all that much, but my doctors are absolutely awesome!

Me with my awesome NIH doctors! 🙂

Are we having fun or what? 🙂

And you know what I found out the last time I went? The doctor that day (not pictured, but still awesome) told me most of the research on dystonia is focused on dystonia caused genetically, which is totally different from mine. And they still have no clue why some stroke patients develop dystonia and some don’t.

Isn’t that awful awesome? 🙂

PS: Here’s 17 things people who live with dystonia wish others understood.

PPS: Dystonia may discourage you, but it doesn’t define you! 🙂

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