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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.

Experimenting

Terri Reinhart

During my last two years of teaching, I had a lovely assistant teacher who was also an aromatherapist. I swear she kept me upright during those two years. She would often take just one look at me as I walked into the room and then go to her supply of oils, bringing one out for me to smell or to put a drop onto my tongue. Mostly, this was a pretty non-invasive way of dealing with my challenges, and it worked! I was able to get through those years as my Parkinson’s was starting to take hold of me more and more.

 

April was also an amazing cook and I include her oat porridge as one of the most delightful of her aroma therapies. She was responsible for baking bread with the children every week and when it was ready, she would mix real butter and a little bit of vanilla extract to make a spread that was unbelievably good. I gained about 10 lbs over the two years we worked together. The kindergarten children, who are notoriously picky eaters, would ask for seconds and thirds of nearly everything.

 

However, I didn’t wholeheartedly endorse everything she put before me. Generally speaking, most of what she gave to me was exquisitely good, which meant that I forgot to be careful. Yerba Matte is a tea that is popular in South America. The South Americans, I believe someone once told me, load this tea with sugar and milk before they ever risk having it touch their taste buds. I will admit, my experience with it was brief. One taste of this incredibly bitter beverage and I felt like spitting it across the room. I didn’t do that, however, because that would be unbecoming in a kindergarten teacher. Instead, I made such a face that I am still teased about it.

 

Similarly, I have learned to appreciate April’s hot cocoa with red pepper added to it.  It's good, as long as there's not too much pepper! I’ve had to experiment. My first try resulted in my suddenly being unable to breathe as the pepper attacked my tongue and throat. I coughed and spluttered, with tears running down my face. It took awhile to find the proper dose. Further experimenting with another remedy, peppermint oil, taught me to not put an entire drop of this oil on my tongue. It yielded another coughing fit and I felt I was breathing clouds of peppermint as a dragon breathes fire. A tiny amount can work wonders. Finding the right dose is pretty important.

 

I have had to learn to be cautious about my medications, too. I had tried dopamine agonists in the past and have had pretty dramatic side effects, so when my doctor suggested I try another one, I wasn’t sure I wanted to. But this particular medication, Requip XL, is a little different. For one thing, you just take it once a day. It is a controlled release drug and doesn’t have nearly the side effects that the regular drug has. I decided to give it a go. My doctor and I began a week of experimenting with different combinations and dosages of the drugs.

 

After this week, I can say, without a doubt, that I can’t imagine anyone willingly experimenting with drugs of any type.

 

The first day, I spent flat on my back. I felt miserable, like I had the flu. The next day, something else happened. We finally figured out that the Requip was suddenly working so well that I had essentially overdosed on Sinemet (carbadopa/levadopa), and I was having "dykinesias" or involuntary muscle movements. This sounds pretty harmless but what this meant for me was that I literally could not be still. My heart was racing, my left arm and was moving around in a rhythmic pattern, my body was rocking back and forth, and I started having some strange obsessive/compulsive behavior.

 

In this rather manic state that I was in, I could suddenly see clearly, in every minute detail, everything that I needed to get done that week. I went around the house gathering all the supplies and materials for the crafts that needed to be finished for the craft fair that weekend. I put them all in our dining room, on the table, the chairs, and on the floor. I couldn’t stop! I also couldn’t be still long enough to actually do any craft work. I was exhausted and miserable. When I drove to school to pick up my daugther, the dyskinesias were still there, though milder. At least I could have music playing loudly in the car so that, if anyone saw me moving about, they might just think I’m attempting to move to the music.

 

By now, we’ve done enough experimenting that things are leveling out again. I can take the Requip as long as I cut the dose of Sinemet in half. I have had three days now where my dystonia has been kept to a minimum and I have had very little in the way of dyskinesias. I get queasy on and off during the day, but not enough to stop me from doing what I need to do. There are still some “off times“ and I still have some dystonia, but it has become more manageable. For now, the experiment has paid off.

 

My health is a bit more stable and the side effects aren’t nearly as bad as the Yerba Matte.