A group of family and friends experience a monster encroaching upon them in a family photo.

Re-Thinking Images of Parkinson’s Disease

What images of Parkinson’s disease do you carry? You know, mental pictures or visual impressions. Which words or phrases or objects, when you hear them mentioned, suggest a Parkinson’s likeness?

Nearly three years after my diagnosis, I carry several images.

The beast

Early on, I began thinking of the disease as a beast -- a wild, brute of a thing that stalks, hones, and pounces, often without warning. The beast’s proximity, as well as the pace of its pursuit, varies. Sometimes, it seems far away, focused on other prey. Other times I sense it drawing near, quickly closing in on me. My worst moments have me firmly in its clutches, hoping not to be consumed. Either way, I'm always in its range.

Constantly threatening, the beast never leaves me alone.

The bus

Michael J. Fox, who met the beast in his twenties, mentions the image of the bus in one of his memoirs. In my own way of thinking, the bus has begun its route and, currently at the far end of town, it heads my way. Its schedule remains maddeningly imprecise; but, presumably, it’ll reach me at some point. I’m not waiting to catch it, that’s for sure; just the opposite, in fact. I want to avoid the bus altogether because it may well run me over. In fact, I’d like to have no buses in my city; in any city; in any place. But for now, that’s not possible.

So I live in anticipation of its approach.

The new family member

When my neurologist diagnosed me, he said, “I know this is hard, Allan. There’s a lot to take in. You now have a new family member. Everywhere you go, you’ll take this family member with you. It will take some time to adjust.” It’s an apt image. My new kin hovers non-stop, like an anxious child needing reassurance, or like a parent or friend that cannot help but intrude in daily life. It’s taxing, tiring, and, at times, borders on traumatic.

Almost three years into this disease, I’m still adjusting to life with the new family member.

The clock

Having Parkinson’s sharpens my awareness of time. With each tick of the Parkinson’s clock, the hours, days, months, and years of life feel more urgent and hasten new meanings. The burdens of living on borrowed time, and of knowing that progressive diseases progress, persist. According to many movement disorder specialists, even the best medication for treating Parkinson’s has a period of efficacy that eventually begins to wane. Medications can’t keep up with the disease.

As a result, it's difficult not to hear the ticking clock.

Re-imaging PD

While these images may seem solemn and even sad, I’ve discovered in them unanticipated reassurance. When looked at differently, they become less alarming, present fewer burdens, and can even emit rays of hope.

Consider that over time and with concerted effort, beasts can be tamed, if not domesticated. They can become less aggressive and destructive, less angry and quarrelsome, kinder and gentler and more forgiving, especially when approached with caution and respect, and when trained in alternative ways of being a beast.

Remember that buses get delayed and rerouted; at times, they break down; and, occasionally, the bus we await, and possibly dread, never comes. So why ruin the day, which we never get back, by worrying about this bus hitting us?

Recognize that while new family members can be disruptive, they can also bring us new experiences, a wider circle of friends, a larger community, and they can add daily beauty and joy previously unforeseen. They also have the capacity to teach us in ways never imagined.

Most significant to me, being on the Parkinson’s clock offers reminders that life remains finite and unpredictable…for everyone; and that all we really have is today. As Mary Shelley put it, “the beginning is always today.”

We live as though we know a lot more about the future, and our own path, and what’s headed toward us, than we ever truly know. Consequently, we take a lot for granted.

In this way, I remain grateful for hearing the ticks.

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