Parkinson’s

I first learned of my friend Pedey in early 2019. I’d wondered about him and feared him by name since the previous summer. It had been probably about ten years since Parkinson’s Disease had infiltrated our charmed existence, but until those eleventh hour conjectures and, later, medical confirmations, it appeared to me and my wife that I was living a life with a few dozen weird, and no doubt frustrating, different conditions. And as I peddled symptoms from specialist to specialist, I felt like I had a medicine cabinet full of bizarre pills for bizarre illnesses.

Then, it all started to come into being, it all started to make sense. My Parkinson’s journey will be well-documented elsewhere in due time, and this site will go into great detail on some of my specifics. They say “If you know one person with PD, you know just one person with PD.” To that, I say, “Duh!”, but the point being made is valuable enough to warrant clarification.

There are many situations a person could find themselves in, medically speaking, which have a clear roadmap. Many which layout the same timeline and timeframe for the vast majority of those on its course. Parkinson’s doesn’t behave that way. It usually comes later in life but, as in my case, “young-onset” is also a possibility. It may present with a cadre of motor symptoms or, as in my case, just a few, here in favor of the unseen “non-motor” symptoms. As such, I’ve often referred to the “bingo card” before me. Some days I feel like I’m on my way to a cover-all, yet on others I watch the work of my peers online and think I’ve got it pretty easily, relatively speaking.

The main thing I’ve learned in the past five years is that PD is with me for the long haul. I commend and pray for the scientific community working diligently to help those like me who have yet to be born even. But, I know at the same time, that their work will likely, at best, pause my progression at some point in the future. I had lost 80% of the dopamine neurons in the part of my brain called the substantia nigra before any of this was noticeable. So, barring any regenerative formula, I know, too, that Pedey (my monster-in-tow) is with me for the duration.

Unlike, say, a cancer, who shows up for a winner-take-all battle, and nothing else, PD is much more the unwanted houseguest, remora, or lichen. It shows up, gets a feel for the place, and you can’t get rid of it. Therefore, I think of Pedey like that kid in “About a Boy”. He just showed up one day, we had a stare-down at the front door, and now he’s just sitting on the couch eating cereal with me.

I feel like, in the case of the cancerous invader, a battle is necessary. You must do everything in your power to vanquish it. It’s all about the game face. But if I were to wake up every morning and view my discomfort in that same way—if I woke up cursing and hating Pedey, I’d actually be cursing and hating myself, because we are one and the same now.

That’s no way to start the day, so instead when he acts out, I may put my good hand on the arm that hurts and say “It’s okay, Pedey, I’m right here. I’ll take care of you. (But if you want to spread your wings and fly, that’s okay too!)”