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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.

Choices, Choices....

Terri Reinhart


small%20irises.jpgMay 15, 2008

Years ago, while teaching kindergarten, I caught a couple of the boys eating iris blossoms on the playground. A frantic call was made to the Poison Control Center and I found out that iris blossoms were not on the list of dangerously poisonous plants. I was asked to watch them, however, as there really wasn’t much information listed about the effects of consuming this particular flower. Not many people would consider doing this. In fact, probably the only people who have ever experimented with the wild notion of eating irises would be five year old boys who wanted to make purple spit. I passed that bit of information on to Poison Control and for the next few minutes, I couldn’t make out anything they said. Maybe it was a bad connection.

I thought of this story not long ago when I was prescribed a new medication. Among the side effects was that it “turns all your bodily fluids orange”. COOL! If only I had that medicine all those years ago, I could have been the coolest kindergarten teacher on the planet – the one with orange spit.

My doctor is extremely good at explaining medications and their side effects. This is good because my body tends to be just sensitive enough that if there are side effects, I’ll have them. It’s nice to have at least a little bit of warning. And if they are not explained to me in a healthy way, I tend to freak out. That happened a while back with a (now former) nurse practitioner who prescribed a drug that, when I read the literature, I found had a possible side effect of “falling asleep without warning while doing routine daily activities, such as driving.” As I was then driving 17 miles on the freeway each way to work, I called and talked with the nurse practitioner. She tried to reassure me by saying, “Don’t worry, if it happens once, we’ll take you off of it.” I told her that if it happened once, it probably wouldn’t be an issue. After that, I went through my neurologist whenever I needed to ask about medications.

My neurologist, by the way, is a lovely woman who listens to me and respects me as a person. She is obviously very intelligent, articulate, and I am sure she is one of the top doctors in her field and deserves a raise. If I have DBS brain surgery in the future, she’s the one I will trust. She also reads these articles. Did I mention how intelligent she is?

So, at my last visit, I was prescribed a couple of new medications and my doctor very carefully went over all the side effects with me. “Oh, and it can cause compulsive behaviors, so if you experience anything like that, please let me know and we’ll adjust your dose.” She went on to say that while it sounds humorous, she knew of patients who had spent all of their savings on shopping sprees while on this drug. The compulsive behaviors could include compulsive gambling, shopping, or even sexual behavior. She also said that some people try to direct this compulsiveness into a particular area, such as crafts. They might work on their crafts to the point where they forget to feed their family.

Oh boy.

Of course, if that last one is how this manifests with me, I’m okay. My family wouldn’t notice. I’ve been doing that for years. But it made me wonder. Could I possibly direct compulsive behavior in a way that it would be beneficial for me? What would I choose?

I’m afraid that gambling and shopping are out. We definitely can’t afford that. I will give all my credit cards to my husband and also have him change the passwords on my internet accounts so I cannot click and spend.

Compulsive sexual behavior is also out. That would be way too complicated and way too much work.

My kids would probably prefer that I become a compulsive baker and spend hours every day baking cookies and cakes. The only problem is that compulsive baking would lead to compulsive eating which would ultimately lead to the need for buying bigger clothes which would lead to compulsive shopping which is out already. Sorry kids.

My husband might suggest that I become compulsive about cleaning. This actually sounds good and if I could pull it off, that might be the way to go. I’m not sure that we can direct compulsive behaviors to something that is totally against our nature, but it’s worth a try. If nothing else, I would be busy for months. The thought that someday MY house could be sparkling clean and neat with no piles of papers anywhere and nothing out of place…? I’m sorry. I’m just having a hard time even imagining that one.

Perhaps I’ll try compulsive gardening. It wouldn’t matter how many vegetables we eat and that would save us money in the long run. And I would love to see neat rows of plants with no weeds growing in the pathways. I would also have our lawn and flower beds perfectly manicured. This sounds good. I’ll have to let you know how it goes.

Oh, and we have a large bed of iris that desperately needs attention, too.