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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 Hare is Back

Terri Reinhart

My kitchen needs rearranging. Currently, the baking supplies can be found in any one of four different cupboards, the pantry down the hall, or on the shelves in the laundry room. Generally, I don't pay much attention to my lack of efficient organizing. It's like when my son learned how to type. He never caught on how to do it the right way, but he was still able to pass the speed test at school. I'm not trying to pass a speed test on baking or even on getting everything ready to bake, but I would have liked to be a wee bit more together when my friend came over to bake with me this morning. 

First of all, the reason she offered to come over and help bake is because I had to use up some of the 3 1/2 gallons of buttermilk in my refrigerator. I didn't want it to go to waste. Why did I have 3 1/2 gallons of buttermilk in my refrigerator? Because I didn't want it to go to waste. The community pantry had about 15 gallons of buttermilk and, at the end, workers told me, "Take it! Take it!" I should be commended for not taking all of it.

What was I talking about? Oh yeah, the kitchen. I'm ready to sit and ponder how I might redo the cupboards. While I ponder, I'll knit. Knitting is cool and it helps  me think. I wonder if I should make a sweater or a poncho for the little kitty I made. A sweater would look nice, but a poncho would be easier. Maybe I'll go look up a few patterns on the computer.

My desk is a mess. I need to reorganize this area, too. Since I watch movies on this computer and knit at the same time, I have my yarn basket under the desk. Brilliant move, methinks. The knitting needles I used on my last project are sticking out of the pencil holder and the pattern I'm working from is.. where? back in the dining room. My other knitting supplies are in my work room, which I have been rearranging and reorganizing. This is why there are boxes filled with odds and ends, piles of books, and dog toys all over the floor.

But I digress....

I should be making dinner. 

Leftovers. I'm cool. Pizza doesn't take long to warm up so I have time to get something else done first.

Distractible? Yeah, but I don't mind. It’s kind of nice for a change. For the last six months, I’d found myself dragging more and more. I thought I’d learned to appreciate the Way of the Tortoise, but the Tortoise wasn’t moving much anymore. I wasn’t ready to learn the Way of the Potted Plant.

The worst of it was, I didn’t care and I knew I didn’t care. I didn’t want to not care. It was depressing. I had gone four whole months without going to coffee with a friend. I hadn’t prepared for the holidays. No baking. No cards. No shopping for gifts. This was not acceptable. I figured it was related to my medication and decided I would definitely bring it up with my neurologist.

Then, right before Christmas, I realized I had run out of the drug which happened to be the one that had introduced me to the Way of the Tortoise. I ordered it, but I knew it would be a week or more before it would arrive. Unintentionally, I took on the experiment of going off this drug for a week. 

This is where I'm supposed to say we're really not supposed to do this and warn you all to not do what I did. It's still good advice. I probably should have called my doctor, but it wouldn't have gotten the meds to me any faster. No lectures, please, or if you must, at least don't shout. My startle reflex is drinking espressos again. I’m a wee bit jumpy. I'm back to the Way of the Hare.


After a week off the drug, I wondered why the heck I was taking it. Granted, I was having a lot more dystonia. I also had a lot of nervous energy, but the upside was I got more sleep - good deep sleep - than I'd had in a long time. I had energy. I didn't care if I was a bit scattered. Dystonia can be painful, but as things go, I’d rather feel pain than not feel anything.

My neurologist agreed with me and said I could and should stay off the drug. She then explained something else. I am now 60 years old. I am no longer a young Parkinson's patient. We have to look at drugs differently now, she said. Because I'm old, I said. My doctor smiled. Older folks' bodies respond differently to medications. Usually, it means there's more of those non-marketable effects we're all so very not fond of. My body tends to respond to drugs in rather weird ways at the best of times.

I'll take that. I'm just happy to have some energy again... even if it means it means more dystonia. It's a matter of what's harder to put up with and, well... how normal do I have to be anyway?