Parkinson’s Disease – The Descent

At the end of the 2013 – 2014 school year, my eleventh as an elementary school music teacher, I was more exhausted than normal for that time of year.  I was too tired to even be excited about a new clinical trial using a new DBS device.  I had heard about it in March, and now, the last teacher workday of the year, I was headed to the neurologist for the beginning of the screening. I didn’t leave my classroom packed down for the summer that day.  Rather, many of my personal items were tucked safely in the car.  Somehow I knew the next school year was going to be very different.

In late June, while on vacation deep in the mountains of West Virginia, I received a long list of appointments for the next year of my life- dozens of them, it seemed.  My first reaction was excitement. This was an opportunity to try out top-of-the-line technology, already approved and being used on other continents.

The excitement supplanted the reality for a while. But as we moved into the new school year, I missed more and more days of work as the testing grew more intense.  The nights I had to go without PD meds were excruciating.  Sleep was impossible as my body writhed with muscle spasms and shook with tremors from deep within.  Parkinson’s was taking its toll.   The stress of the job, combined with days of testing and the mounting tension in the face of potential brain surgery left me numb and dropping details both at work and at home.

Finally, in September, the testing was done, and I was cleared for the clinical trial.  I had already begun to prepare for brain surgery in October.  I was swimming close to a mile several times weekly, and taking yoga classes.  Prayer warriors from work and church were gathering around me.  I even found a few books to read as I researched the details of what would happen. Still, October 15 approached like a freight train through the proverbial tunnel…and my name was square on it’s face.

I’m not sure what was really going on in my head as October 15 approached.  Even as we drove the hour and half from home to Winston, checking into a local hotel with our two grown sons, and laughing our way through a delightful dinner the night before, the reality had not hit me.  But I knew I was about out of running room.  The descent into reality was almost complete:  Parkinson’s was taking over my life, with or without the surgery.  There seemed to be no chance to be “normal” except through the doors of the surgical ward.

And so, I naively went to sleep in a strange motel room the night before, believing the best would happen for me the next day.  Unaware of just how formidable being awake during brain surgery can be.

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