Marching with Parkinson's
“Faster!” my son yells, as I inch my way down the driveway.
“Come on!” my grandson chimes in.
If they both weren’t wearing such big grins, I’d smack them with my cane. Instead, I proceed with caution, making my way very slowly down the incline of our driveway, crossing several fingers and praying that I won’t fall. Again.
Walking downhill is scary for me these days. Even trying to ride a “down” escalator feels threatening because I have a lot of problems with balance and depth perception.
There are other weird, daily constraints. My hands get the shakes, for no apparent reason. My feet unexpectedly “freeze” and feel as if they were glued to the floor. I have hallucinations. I can’t smell baking bread—or anything else. I tire easily. I fight recurring battles with depression.
More worrisome is the cognitive decline. Some days I have trouble thinking about more than one issue at a time; other days it’s difficult to make decisions. I can’t remember names and proper nouns. I stop in the middle of a sentence and can’t recall where I was headed or where I came from.
Whine, whine, whine. Buck up, you tell yourself. We’re all growing older, and all systems are showing wear and tear. But these breakdowns are different.
An analogy might be a driver from rural Nevada trying to negotiate L.A. freeways. When that driver exits the 405 and approaches a chaotic intersection on the city’s surface streets she has to slow way down and figure out what lane to move into for a turn. After engaging her right-turn signal she has trouble sorting out what comes next.
You don’t want to be driving behind this traffic hazard, and neither do I. Which is why I turned in my car keys several years ago. Like nearly one million other Americans, I have Parkinson’s Disease—PD in the medical community’s clever shorthand. I was diagnosed in 2007, after I noticed a slight tremor in my right forearm. At the time I thought it must be the result of years of playing tennis—a cousin, perhaps, of tennis elbow.
As with many PD patients, troubling symptoms didn’t kick in for a decade. When they did, I was told that an estimated 80 percent of the nerve cells in a critical area of my brain had died. Those cells produce dopamine, a chemical that controls the body’s movements by sending messages to its central nervous system. When the brain can’t produce enough dopamine the body’s movements become slow and abnormal, stiff and jerky. Presto, there’s a so-called “movement disorder,” and grandma can’t go downhill.
But the old broad has a few tricks up her sleeve. When my feet “freeze” and refuse to carry me into an elevator, I visualize a pulsating laser beam at ankle height and I step high--over the perceived barrier. When trips and stumbles threaten to take me down, I drop a Lady Gaga disk in an imaginary CD player, crank up the volume and march down the sidewalk in time to the disco beat.
Glass-half-empty observers will tell you that PD is a progressive, degenerative disease of the brain with no known cure. Every patient experiences different symptoms in different degrees. There’s no way to predict how annoying symptoms can morph into disabling symptoms—or when it all will come crashing down.
Thankfully, there are armies of glass-half-full neurologists who can point to continually improving meds, and they work closely with physical therapists who are developing exercises that can slow the progression of PD.
I also like to think that one can draw encouragement from successes in other endeavors. In need of inspiration? Take a look at Evonne Goolagong Cawley’s effortless play on Wimbledon’s grass courts in the 1970s and early ‘80s: Was there ever more exquisite “movement” on a tennis court? “Most of us play a serve and volley game,” tennis great Martina Navratilova has said. “Evonne plays a saunter and volley game.”
Breakthroughs are continually being recorded in the PD universe and as I lace up for another march around the block, I think that we can also take encouragement from our own modest achievements. Case in point? I once rode a bicycle from San Francisco to Los Angeles. In one week. When I was 53.
Go, grandmas!
Truly inspirational. One big ace up your sleeve: whatever nerve cells control writing, yours have never been better. Forward march!
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