Parkinson’s Disease – The Waiting Game

Five months ago, I slammed into the Wall of Reality. The way back to myself has been difficult at times, sometimes intriguing, and occasionally funny. I had a second surgery, 3 weeks after the first, to implant a computer module in my right shoulder – it still feels alien, but I’m glad it’s there. I don’t remember much about that surgery – I was in and out the same morning. The best part of that day was our now-traditional comfort food ritual at Cagney’s Restaurant.

After that second surgery, I found another large bandage on the side of my head, and I didn’t understand why it was there. Underneath was a third incision where the wires from my brain were connected to the ones tunneled from the computer module up my neck, behind my ear, and to the side of my skull – all under the surface of the skin. Somewhere in the thousands of words describing what to expect during all aspects of the clinical trial, I had missed that detail. It was a simple thing, but I had reached the limits of my cope-ability.

Removing that bandage was traumatic… it was taped to my hair, and Ed had to cut even more of the hair away to get it off. We discovered that yet another major patch of hair had been shaved, and I was left with a blotchy, shaggy, ridiculous mess for a “hair style.” In the days that followed, not even the beautiful scarves Joel had brought me from Chicago could ease my despair. I felt ugly and old, terribly uncoordinated, and my speech was slurred. My balance was compromised, and I fell  multiple times. I missed my colleagues at school, and the children I had taught. I felt like the dreaded invalid who had lost all stature and visibility in society. I did head back to choir rehearsals relatively quickly, only to discover that I could no longer keep a steady beat! And my conducting patterns turned to spaghetti shapes in the air every time I thought of anything besides the beat pattern. I thought, “Surely, SURELY, I’m not going to lose this last remnant of what I can do! I’m much worse off than before the surgery!”

The next three months reminded me of a roller coaster, as I endured the testing that was a necessary part of the clinical trial. I was frustrated that I couldn’t really talk with anyone about what I was experiencing. There was a “blind” element to the trial. Even now, I cannot really speak openly about it, but suffice it to say it was the longest few months of my life.

Trips to the neurologist involved 3 consecutive days of journaling every half hour before the visit. It’s a miracle I didn’t throw my phone against the wall as it sounded out the reminder every 30 minutes! And then, I had to go without any PD meds the night before each evaluation. This brought a whole new perspective on what withdrawal from drugs must be like. I couldn’t sleep at all those nights as my body became a mess of rigid, tense, constantly-writhing muscles. (I swear, I never pulled that many all nighters the entire time I was in college and grad school!) For several days after each visit, I was so sore I could hardly move from the muscle strain.

Some friends called me a hero, and I always countered with the idea that “Naïve”is the flip side of that coin. I was tired of everything! I wanted my own skin back – to feel like myself again.  I wanted to be normal!   I had not fully counted the cost of delayed gratification, nor did I realize how exhausted I would be. Four months was a long time to wait for really positive results after such a radical invasion in our lives!

Lest I leave the reader totally depressed, I hasten to add that there were some good things about this period of time. My sister, Marie, became a great personal cheerleader as she encouraged me almost daily. “You can do this! Take one day at a time. Keep focused on the goal. These months will seem like nothing once the computer is optimized for your needs. You can do this!”

Marie was the one who took one look at my blotchy hairstyle and said, “Come on! We’re gonna find you a wig.” So, we had a party at a wig shop, trying on wigs and laughing at our different selves. The day ended with my practical sister giving me a buzz cut so my hair was almost uniformly super short. Incidentally, out of that came my new pixie hairstyle. Wish I’d discovered this style about 15 years ago! “Pixie” style went quite well with the cool hat I found at Cracker Barrel.  Son Joel taught me to wear it rakishly to one side, and with a grin, he charmed me into believing I might actually look nice again someday.

I never quite understood the real value or sacrifice of a caregiver. (Never thought I would be the one who needed a caregiver… always thought I would be the one giving the care!) There was a day when my husband, Ed, was gone for several hours longer than I expected, and I found myself in a panic, imagining what I would do without him. It was all about the “little” things – helping me with a gentle push to get over the threshold into the house, or bringing me a fresh cup of coffee, unbidden; cooking my dinner (lunch, breakfast, snack); carrying in the groceries; taking my arm as we walked across a parking lot…and a myriad other things, all of which spoke to his awareness of and care for me. During moments of frustration, we felt better as we talked openly and honestly about what was happening to us both. And we became even more of a team as we faced the changes Parkinson’s was bringing to our lives. I was not in this alone.

And then there were those friends who brought food – always at opportune times. And cards. And phone calls. And prayers. Some sent flowers. Others stayed to visit, giving me glimpses of the community I sorely missed. All of this brought a growing awareness that not only had God not abandoned me, He carried me on the arms of family and friends and the medical team who attended me as well.

Lessons learned: For all my independence, creativity and leadership, I am still standing because I live in community with some of the most special people in the world. And, I am most fortunate to have found the team of neurology specialists at Wake Forest Baptist Medical Center, also without whom none of this was possible. But I am getting ahead of the story, for optimization was yet to come.

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