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My Parkinson's Journey

In which Terri shares a humorous look at her journey with Parkinson's disease and Dystonia:

For me, illness and health are not opposites but exist together. Everyone has something that is challenging to them. Mine just simply has a recognizable name. My life will take a different path because of this but that's okay. Everyone has changes in their lives that create their path.  I'm learning how to enjoy whatever path I'm on.

Twisted

Terri Reinhart

It's Dystonia awareness month and I'm supposed to write something so people will learn about and start to recognize this totally weird and somewhat unpredictable disorder. Considering it is, like Parkinson's, somewhat of a designer disease and affects each person in a unique way, it can be difficult to explain. Some of my twisted friends are posting videos. After all, a picture is worth a thousand words and a video is worth at least a thousand pictures going by very quickly. (Actually, that's film, but it sounds good.)

I'm not real comfortable doing selfie videos, so I'll write and do my best to not use a thousand words. A disclaimer before I start: there may be some of you out there who will say, that symptom isn't dystonia, it's Parkinson's. For this, I will apologize in advance. Sometimes I can't tell which is which. There may also be a few people who will disagree with my weird sense of humor. I won't apologize for this. It's how I stay relatively sane...or at sane enough that my family and other relatives will put up with me.

So, here goes...

Dystonia comes in many forms. These are just a few:

1. The Rebel - the whole body is functioning normally or what generally passes for normal these days. Yup, it's all good. Except for the big toe on one foot which is standing at attention, perpendicular to said foot. The rest of the toes often follow its lead. The opposite of the Rebel would be the Shy Toes, which curl under the foot. Either way, they're not fond of shoes.

2. T-Rex at Dinner - when the elbows decide to attach themselves to the sides of the body, limiting arm movement considerably. Why this happens more often at dinner than at other times of the day is unknown. Eating is definitely a challenge. Good for you if you're dieting. Not so good if you're hungry and your family finishes everything before you get the first bite all the way to your mouth. 

3. Wink, wink - It's really the muscles in my face pulling to my left side. I'm not flirting with you, I promise. This is different from Blink, blink, which is a Parkinson's thing that happens when we don't blink, blink enough.

4. Involuntary Pliés - My legs want to dance, sometimes without telling me. Another way to describe this is to picture yourself on strings, like a marionette. The puppeteer lets the strings go slack suddenly, then pulls them back up again. It's kind of cool. Really freaks out people, especially going through security at the airport. 

5. Twist and Shout - This can be one body part or many at once - often (for me) caused by a startle reflex. Someone drops a spoon in the kitchen, you never know what I'll do. My arms may twist up onto my chest or they may flail outward (often when I'm holding a sharp knife - which is why my family is very careful not to startle me), my feet turn in, I may do a #4, might walk backwards or sideways with great force until I hit a wall or counter. The shout part generally includes a lot of swearing.

6. Bar Fight Gif Mode - You know those annoying gifs that show a very short video over and over and over. That can happen to us sometimes. We become gifs. The neck jerks to one side and down as though someone is slapping you, over and over. The abs contract as though you're being punched in the stomach, over and over. You can't find the pause or stop button and you're stuck in this mode for some time. (My record so far has been about 7 hours) It's not only painful, it's boring.

7. The Works - All, or most of the above, happening at the same time. Generally referred to as a Dystonic Storm. It would be like being fully conscious while having a grand mal seizure. Like being beat up, relentlessly. 

Mostly, it's a weird disorder where our bodies seem to be arguing over which part is making the decisions. It's like having cerebral palsy - part time - and the diagnoses are sometimes confused. With many people, dystonia is extremely painful. We don't have all these symptoms all the time. Sometimes.. occasionally... well, once in awhile, we even look sort of ...NORMAL! 

Just don't hold your breath. We'll come out with something entertaining and twisted again soon, don't worry.