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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.

The Way of the Tortoise

Terri Reinhart

Earlier this year... I came home from running errands for my parents and stopping for tea with a friend and looked through our little free library by our house. We enjoy seeing neighbors and other passersby stop and pick up books. Often, people leave books, too. This day, there were a number of new children's books, including The Tortoise and the Hare.

I've always loved the story of the tortoise and the hare. I identify with the tortoise. He might be slow, but he's determined and focused on where he is going. Yup. I'm the tortoise. Slow and steady. Someone who is dependable. 

Yup, that's me. 

I brought the book into the house with me and set it on the desk so I could read it to the grandkids. Then I put the kettle on, started fixing some lunch, went out to get the mail, chatted with our neighbor, remembered I needed to give them some eggs, went back in to the kettle, which was whistling loudly and sputtering, took the kettle off the stove and finished making my sandwich. I suddenly realized my neighbor was waiting at the door for her eggs. I dashed off with the eggs and an apology then returned to sit with my tea...and book.

Good old Tortoise kicks Hare's ass and wins the race while Hare is hopping here and there, stopping in the meadow to have coffee with his cousin Rabbit, taking a quick nap or two, and dashing over to the store to buy some lettuce and carrots for dinner. He's so busy, he forgets all about the race and, when he remembers, he's already far behind.

Wait a minute. I sound more like the hare. I don't want to be the hare. I'm the tortoise, right? No? Damn.

This spring... Medication change. It's a good change as it prevents the awful dystonic storms like the one that landed me in the Emergency room a few months ago. It's also hard to get used to. I feel heavy.. and slow, both physically and, to some degree, mentally. I can do one thing at a time. If I try to do more, I fail miserably, but I'm not too motivated to try. I feel as though I am carrying a heavy weight. I keep going all day, slowly. I get things done, slowly. If I want to say something, I have to think about it for a while first. I feel like I'm going crazy.

Um... I am the tortoise? Damn. 

I didn't realize how much I was enjoying being the hare. If it wasn't for the fact this medicine really works well without too many weird effects, I would talk to my doc and go off, but I know what I have to do:  learn the way of the tortoise.

Will the heavy slow effects of these meds lessen in time? Can I learn to be a successful tortoise and be the dependable wife/mom/friend I want to be? 

I've always believed that medications are the biggest challenge we face when we have a chronic disorder. If the odd, non-marketable effects weren't enough, there's the challenge of wondering who the heck we are.  Am I a tortoise or a hare? Am I an extrovert or an introvert? Am I happy and positive or depressed and negative? If I'm a tortoise, am I still me?

And the real question is: What is me, the real me, and what about me is just simply due to the chemical changes in my brain and the medications? 

It's not an easy question when you're at the mercy of medications that affect the brain. At one point, I read on a Parkinson's website about how impulse control disorder is a part of PD for many people. It's not. It's an effect of the drugs. Asking about DBS surgery, I admitted my fear of the surgery is due to the possible effects of personality changes and short term memory loss. I was told I was being unreasonable because short term memory loss and personality changes eventually would happen with Parkinson's anyway.

Huh? Even if this is a valid statement, and I don't believe it is, the concern remains. Why risk hurrying that along?

Methinks we're just prone to identity crises. We have had to give up jobs and change the way we live. Some lose their spouses who can't handle living with someone who has PD. Not all of our friends like to put up with us as our health and our meds change. WE don't always like to put up with ourselves as our health and our meds change. We all struggle with the question of who we are and what can we do that is meaningful. 

This last week, I received part of the answer, sort of, anyway. Regardless of anything else, we are the family our children and grandchildren and my parents can count on.  No matter what, I am still Mom, Grandma, daughter, wife. 

And Tortoise. Can't forget the tortoise.