My PD Story

The Word

All who cross over into the land of the afflicted have one. A word. A sentence. A fate. Mine? Parkinson’s, the P word. It arises unbidden as I walk, my left leg not quite keeping pace with my right. It floats to top of mind when my tremor flares in a social setting, again when I realize I am not speaking loudly enough in conversation. Parkinson’s. Parkinson’s. Parkinson’s. I’m sick of it and I’m sick from it, the word and its confederates: neurological, progressive, incurable. 

I was first bestowed the word on an otherwise unremarkable day. I arrived at my initial appointment with the neurologist assuming I would receive confirmation of my primary doc’s best-guess diagnosis of an “Essential Tremor” — relatively benign. We had a brief conversation, she had me perform some dexterity tests, observed me walking up and down the hallway, then asked if I had ever acted out dreams, punching, kicking, or yelling while asleep. I had not.  

She then abruptly said, “Your symptoms are consistent with Parkinsonism.” What? What did that even mean? Was she trying to say the P word without saying it? I asked her point blank. Her answer? A slight head nod and a “Yes.” At that pivot point, everything reeled and the tectonic plates at my core shifted and fractured. I now had a word, my word, one that will loop in my misfiring neural synapses for the remainder of my days. 

I sometimes wonder what previously occupied all the psychic space now hogged by the P word? An entirely unrealistic assumption that I would always enjoy good health? A smug satisfaction that I was in better health than many of my peers? An underlying sense of physical well-being?  

All those foundational articles of belief vaporized upon my diagnosis.   

I remind myself that I am fortunate to be in the early stages of the P word and still able to do most of the things I enjoy and I am fully aware that there are many with far more daunting conditions than mine. I give myself pep talks: “Don’t be defined by your diagnosis,” and “Keep fighting,” Good advice, certainly, but alacrity and stoicism are lofty, cerebral concepts, flimsy and flaccid weapons in the face of my relentless adversary. The P word, too, is cerebral, but it does its dirty business on a deeper, more primal level, the substantia nigra, those words conjuring a devouring black hole in my cranial universe. Clint Eastwood’s admonition to “Not let the old man in,” is good in theory but the “old man” arrived unannounced and had set up shop before I even knew he was here. 

There are surgical interventions but I am told I am not yet a candidate and that I won’t be until my symptoms worsen. Finally! Something to look forward to! (Insert sarcasm emoji here.) Meanwhile, well-intentioned friends refer me to articles touting potential breakthroughs, even cures. They shimmer like cool water in the distance on my parched P word path. I can only hope they do not turn out to be to be mirages. 

How to proceed? With denial, with exercise, with deflection, with exercise, and finally, with more exercise which I am told can slow the progression of my symptoms. My gallows humor, always at the ready, is asserting itself more now that the actual gallows are in sight. I should note here that the P word is not a death sentence, rather a life sentence. I’m told I will likely will die with it, not from it. 

Given that, there is good reason to think I might stick around to enjoy more springs, more summers, more falls, which have taken on a metaphoric poignancy and, yes, winters, even as I come to inhabit my own. And one day, tremors, shuffling gait, and all, I might see my 90th birthday, attend my grandchildren’s graduations, and even welcome great-grandchildren into the world. Who knows? It could happen. Maybe my new P word should be “persevere.” 

This My PD Story was originally published in The Boston Globe’s Ideas section. 

Learn more about Living with Parkinson’s and explore Parkinson’s Foundation Resources today.