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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.

Bizarre Medical Conditions R Us

Terri Reinhart

Dystonia is on one of those internet lists. You know, the ones you look at when you're bored and you've already lost three games of solitaire and, while you have dishes to do and plenty of other obligations, you just aren't ready to do anything productive. After seeing Dystonia on a list of bizarre medical conditions and reading what they say about it, I'm a bit skeptical about the quality of their information. In addition, the photos that go along with the descriptions show the disorders at their most extreme. It's just more sensationalist journalism turning medical conditions into a freak show.

This is what one list says about Dystonia: "A rare disorder, individuals suffer abrupt twisting motions whenever their muscles sustain any contraction." It goes on to spotlight the case of a young woman whose medical condition was not typical dystonia and may not have been dystonia at all.

Of course, some of the bizarre conditions have cool names: alien hand syndrome, Alice in Wonderland syndrome, or my favorite - Jumping Frenchmen of Maine syndrome. My neurologist actually suggested the possibility of the last one for me because my startle reflex is pretty crazy. Secretly, I was hoping for it because when I'd tell people, they'd be far too busy trying not to laugh to feel sorry for me.

We don't need sensationalists to remind us how bizarre our medical conditions can be. On one of my support groups, people often post questions which start out as "Do any of you go through THIS?" With dystonia, however, we don't start twisting with every muscle contraction. It's trickier than that. Sometimes we can move quite well. Walking backwards is not necessarily easier than walking forwards, either. I do much better going sideways and doing the grapevine.

A little while ago, a friend of mine posted a question on Facebook: "Anyone else bored?" Though I realized she was referring to a less than thrilling Academy Awards program, at that moment, I was anything but bored. I was trying to eat ice cream.

The thing is, I've had a very easy two weeks. My Parkinson's and Dystonia symptoms were no big deal. I had more energy than usual and I was feeling good. I guess it was time for something to happen. After dinner, I was putting away some of the leftover food when I dropped the dish I was holding. Suddenly I was goosestepping backwards across the kitchen. Fortunately our kitchen is small and my backward progress was stopped by the cabinets on the other side of the room. Of course, the surprise of suddenly crashing into something very solid triggered my dystonia and I twisted like a pretzel, arms pinned to my chest, legs crossed, and feet turned in and under. I also started into some involuntary muscle movements called dyskinesias, which most PD folks get with too much medication. I get it when my meds wear off.

I thought it would be a good idea to sit down. Walking on the sides of my feet, I managed to propel myself into one wall and ricochet into the doorway. Eventually I made it to the other room and sat down. My husband felt badly he couldn't really help me so he brought me some ice cream. By now, my neck had decided to join the game of twister and my right ear was attempting to touch my elbow. 

No, I told my husband, I don't want to be fed. I could do it myself. My right hand was working from the wrist to the fingers. It was just the challenge of getting everything coordinated. It was chocolate truffle ice cream. Where there's a will, there's a way. I accomplished it with minimal mess. Okay, compared to a one-year-old eating cake, my eating habits were impeccable.

The Dystonic storm lasted about two hours this time. Now, I'm fine. A little sore, but fine. And definitely not bored.