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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.

Filtering by Tag: insomnia

Keeping Time - all night long

Terri Reinhart

We have no shortage of clocks in our house. There are digital clocks on the oven, the microwave, the coffee maker. There’s a large wall clock over the table. And, if by chance, we miss seeing any of those, there’s a large wall clock in the dining room that chimes every half hour.

IMG_20190330_065046507_BURST000_COVER_TOP.jpg

It’s a very impressive way to feel the time passing as we have two more chiming wall clocks that announce every half hour as well; one is in Chris’ study and one is in the basement. One of the three, we brought from Colorado. The other two were left here by the owner. They all work, but they are pendulum clocks. These delightful, wonderful machines are a little finicky. They must be wound, but not over wound. They must be perfectly level. There’s a tiny mechanism to turn to make sure the clock is going at the right speed.

They all work. One is on time. One tends to run fast. One tends to run slow. This is handy if we don’t happen to hear the first clock. Or the second. Or notice all the clocks in the kitchen. When all else fails, and our cell phone battery is dead, the third clock chimes in, just on time…. or a little behind time. It’s trying hard. In just the right spot in the house, like our bedroom, one can hear all three.

Which is all to say I couldn’t sleep last night, but I knew what time it was. When the clock chimed once, I knew it was… uh… 12:30? 1:00? 1:30? Midnight was glorious with 36 chimes: 12 at 5 minutes till, 12 at the hour, and another 12 at 3 minutes past. I heard the 2 o’clock chimes, the 2:30, the 3:00, the 3:30… At 5 o’clock, I gave up and got up. I try to make myself stay in bed until 6, but it doesn’t always work.

It’s 6 o’clock now and I’ve been up for an hour. Even then, I missed the Parkinson’s Insomnia Club meeting. I think it started at 3:00. I’ve never made it to the meetings, sleep or no sleep, so I don’t know what they talk about. Mostly I’m not really fit for human company at 3 am, so I lie awake coming up with story ideas, which I tend to forget as soon as I get up. It’s a pity, because I suspect they are really good stories, mostly because they keep me entertained for hours.

It’s 6 o’clock again. I’ve been up for an hour and 5 minutes. The furnace just came on with it’s ritual bangs and clatters. It’s raining outside, too, and the birds are singing. Who can sleep with all this noise?

And…. it’s 6 o’clock again. The last of the 18 chimes have chimed. It really is morning.

Time for tea!

About Dystonia - the best resources I've found

Terri Reinhart

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