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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.

Headology

Terri Reinhart

One of my favorite characters in Terry Pratchett's Discworld series is Granny Weatherwax. She is a witch who happens to work in a seemingly unmagical fashion, something she calls headology. In her opinion, witches don't need all that hocus pocus to light fires. All she had to do is throw the logs on the fire and glare at them until they burst into flame from pure embarrassment. 

Terry Pratchett.jpg

Terry Pratchett died last night after battling a rare form of early onset Alzheimer's disease. He was open about this battle, "The thing about Alzheimer's is there are few people who haven't been touched by the disease." I would imagine his openness was therapeutic for him in many ways, certainly much healthier than trying to keep it secret. Even so, any disease which causes such difficulties with memory and cognition, especially when it comes at a young age, is terrifying to most of us. 

A little closer to home, last week we lost a friend who had battled Parkinson's disease and dementia. Maria was 74 years old. We often were next to each other during our yoga classes and I enjoyed her gentle sense of humor. The last time I saw her, it was obvious her illness was progressing. She seemed distant as though her journey was already taking her away from the world most of us know. It didn't stop her from reaching out to me when I needed help.

Someone in the building had been fiddling with the PA system and there was a sudden electronic screech. Okay, breathe out. Admit it, you cringed when you read that, didn't you? It triggered my dystonia and I twisted up like a kindergarten pretzel (uh, a pretzel made and shaped by a 5 year old) and was unable to move. Maria took one look at me, smiled, and said, "I know just how you feel." Then she came and put her arms around me and held me. Whatever it was about this gesture of hers, my muscles immediately started to relax. Headology?

Awhile ago, I was asked to interview a neurologist and write something for my blog on Parkinson's Dementia. I hesitated. I cringed.. and then I agreed to do it. Then I never heard from this person again. In some ways, I was relieved. When I was diagosed with PD, I was finally told that my symptoms were real, there was a physical reason for them. It wasn't all in my head. It was nice to know my thinking was not going to be affected.

Then I remembered those dopamine producing cells which were dying off.. where? In my brain. I'm not sure it's possible to have any chronic illness which only affects us physically. Certainly it's not possible with PD, especially when we factor in all the medications for PD which affect... what? The brain. 

So, if the original interview doesn't happen, I'm going to write down my questions and go to my own neurologist and perhaps a few others I know in town. For Maria and for all those who have dementia as part of their Parkinson's diagnosis, it's worth researching this topic. 

And if Granny Weatherwax is available, anywhere, I'd love to interview her, too.