February 2023

Truth Written in Snow 

There were my tracks, clear in the freshly fallen snow. But something was amiss. Instead of recording a healthy stride, with clean separations between the steps, they formed a pair of channels in the powder, mute testimony to my impaired, shuffling gait. It didn’t take an experienced tracker to read the message. The tracks practically screamed “person with Parkinson’s!”

For some reason they impressed my disease on me in a way that carried more weight than my other symptoms. Here was a record left behind documenting my infirmity. Evidence that was revealed involuntarily and unmistakably.

Parkinson’s disease is tricky to gauge from the inside. Your brain recalibrates so your softness of speech sounds normal to you, while healthy people always seem to be shouting. Patients take mincing steps and wonder why everyone else is rushing.  I even unconsciously drive more slowly since my disease symptoms onset.

We are often oblivious to our comparative slowness. Before my early-onset diagnosis, my brother-in-law drew my wife aside and asked her “Why is Pete moving like an old man?” This came as a surprise to both my wife and me, as PD had crept up so slowly and with such stealth that we hadn’t noticed it. 

Similarly, I later had no clue my dyskinesia, (unwanted, unbidden snake-like movements that develop when there is more medication in your body than it can handle) was as severe as it was until I saw a video of a presentation I gave as a guest speaker to a college class. The camera was fixed on a tripod, and I was visible about half the time I was talking. The other half of the time I was whizzing back and forth out of sight of the lens, propelled by the excess of medication in my blood. I had no idea that I was so hyperactive.

Further we can unknowingly lose our ability to express ourselves with facial signals. Without realizing it, we don “The mask of Parkinson’s.” our faces become flat and expression neutral, robbing our oral communication of the subtlety of meaning that comes from the cues we give with our faces as we speak. This in combination with lack of inflection in our speech and slow reaction time can confuse and even antagonize those we are trying to communicate with. 

Words can mean the opposite of what they appear to be saying on the surface if they are accompanied by the facial gesture that clues you into the real meaning. “Great job!” accompanied by an eye roll means “you screwed up.” But without the facial cues, the interpretation of the words is almost arbitrary, as the person to whom they are spoken assigns them meaning without the guideposts of vocal inflection and facial expression. Often meaning is assigned with a negative twist. Meanwhile, unaware of the fact that we are not sending these cues, we are then blindsided by the reactions to the lack of signals we didn’t realize we were not sending. Result: multiple layers of confusion.

But the tracks in the snow told their story loud and clear.  They accidentally spoke an unmistakable truth to me. An unwelcome truth certainly but delivered with a clarity I was grateful for amid the web of lies spun by Parkinson’s.

by Peter Dunlap-Shohl
NW Parkinson’s Blogger