Distressing Situations
With Parkinson’s comes emotional distress. It results from biochemical changes in the brain and mainly the loss of dopamine, a neurotransmitter that helps regulate our movement and our mood.
At the same time, certain situations may be particularly distressing.
For instance, those with Parkinson’s may have difficulty being with other people who have the disease, at least initially, and especially when others have more advanced Parkinson’s and greater impairment. As a friend put it when I encouraged him to attend a local Parkinson’s exercise class and support group, “Why would I constantly want to see where I’m headed?”
Another type of stressor comes when seeing people we know for the first time since disclosing our illness publically, which can make a diagnosis seem more real and lasting, and which may feel awkward to all parties.
I have been in these distressing situations myself.
Ahhhhhh!
It’s the fall of 2017, nearly a year since my diagnosis but only a few weeks since I revealed it publically. Peering across the large multi-purpose room, I see people of different ages and at various stages of the disease. I’m the youngest one there by at least ten years. Call me precocious, I guess!
Many in the room shake with hand tremors. A few sit in wheelchairs. Some arrive with the help of a walker. But most seem to function pretty well; or at least well enough to take part in a vigorous work out in hopes of slowing down the Parkinson’s beast.
A man named George, whom I’d met briefly, catches my eye. In his 60s, noticeably thin, and hunched over in his wheelchair, he appears to have had Parkinson’s for many years. He’s scrappy, though. I see it in his interactions with those around him, including the instructor. Imagining him as a younger, healthier man, I think about his scrappiness then.
I also wonder if I will share his fate.
It’s my first time attending one of the weekly Power for Parkinson’s (PFP) exercise classes. Dr. Nina Mosier, PFP’s co-founder and president, invited me to try a class after a mutual friend introduced us. Nina and Susan Stahl, her co-founder, became acquainted with Parkinson’s disease because their fathers had it, and seeing the benefits of regular exercise and social interaction, as well as the difficulty finding Parkinson’s-specific exercise programs, they created Power for Parkinson’s, which offers free exercise, dance, and singing classes to people in the Austin area.
Around us, a group of six or eight volunteers, all of them wearing colorful Power for Parkinson’s t-shirts, scurry to arrange chairs and to place dumbbells and inflated exercise balls on the floor. Lauren Lewis, a high-energy fitness instructor turned Parkinson’s exercise sage, has similarly prepared the area around her, where she will lead the class.
My eyes flit to the far side of the room, where I see our longtime friend and neighbor, Betsy, who, unbeknownst to me, is a PFP volunteer. My quick half wave meets her surprised look, and as she walks toward me my heart beats faster and the back of my neck tingles. I also feel hot. It’s the first time we’ve seen each other since I came out of the Parkinson’s closet.
We say hello and engage in small talk, and then the awkward silence hits.
“Do you know I have Parkinson’s?” I say.
“I just heard that a couple of weeks ago; and I’m sorry…but I’m glad you’re here.”
“Thank you,” I say, wondering what else she’s thinking.
The class begins, and Lauren leads us through numerous exercises, some while sitting, others while standing, and still others requiring use of the dumbbells or exercise balls. Dance music plays loudly as she counts and directs.
“1-2-3-4, 1-2-3-4. You’ve got this!” Lauren says.
More than forty of us “Parkies” grind through stiffness, slowness, and tremors to build our core body strength, flexibility, balance, range of motion, and cross-body movements.
“Wooooo!” she yells, the music still blasting.
I see George working hard to keep up.
After nearly an hour, I’m sweaty and using muscles I didn’t know I have.
The music stops, and I hear only the steady hum of the air conditioner. The regulars expect this shift.
“You all did great. Now, let’s work those voices,” Lauren says.
She concludes each class with voice exercises because many people with Parkinson’s lose their voice volume and strength.
Following Lauren’s commands, we slowly take in a big breath through the nose and then exhale while making the sound “Ahhhhh”—loudly and for as long as we can. It’s similar to what you do when visiting the doctor to get your throat looked at.
A symphony of ahhhhhs fills the room as voices with different volumes bounce off the tan plaster walls. After about five seconds, a few voices begin dropping off, and, soon thereafter, a few more, and then, still more, everyone digging deep to find their last ounces of air to expel, all of us simultaneously opening our mouths wide to work on facial muscles that have failed or presumably will.
Eventually, I hear only George’s voice.
“Ahhhhh” he continues, for several more seconds, his lungs nearly empty, fighting his disease with his breath.
“Ahhhhh…!”
Finally running out of air, he turns his head, first to the left, and then to the right. He then lifts his chin and flashes a cat that ate the canary smirk.
“What do you think of that?” he says.
I laugh…and I am hooked.
Oh No!
Around this same time, I take my daughter Meredith to her weekly piano lesson and speak with her teacher for the first time since my diagnosis. We have known Jeanine for many years and consider her a family friend. A fun, attractive, hip, and artsy musician, she embodies the joys of creativity and youthful freedom.
As she says hello, my stomach tosses a late lunch from one of its sides to the other. My heartbeat quickens. I feel clammy even though the back of my neck tingles with heat.
We hug, talk briefly, and feeling my pulse slowing down I gently exhale. I feel good about our exchange, with what I say and how I say it. It seems natural and I even make her laugh. Not bad, I think to myself, and especially for someone with an “old person’s disease.”
As she and Meredith walk into the other room to begin the lesson, I look down and notice that my fly is open! Wide as can be for the whole world to see. The old man’s classic burden.
I quickly zip-up, walk outside, and call Tracey to tell her what occurred.
“You won’t believe what just happened,” I say.
When I tell her, she starts laughing. Hard. And she can’t stop.
“When it rains, it pours,” I say, ‘but at least I didn’t fart as I turned and walked away!”
“Well, there is that,” she says.
Now, we’re both laughing, almost crying, in fact. My aching stomach tells the story.
Before hanging up and walking to my car, where I’ll wait for Meredith to finish her lesson, I check my zipper one more time.
Hmmm
David Foster Wallace once said, “There are forms of humor that escape pain, and there are forms of humor that transfigure pain.” With Parkinson’s, I have discovered that trying to find humor in distressing or awkward situations helps to humanize them—that is, to remind me that they’re fairly common and, typically, less worrisome than I might think—and humanizing them helps to transform them into something less dreadful, less threatening, less absurd. That’s why finding and using humor remains essential as I live with the absurdity of Parkinson’s.
I often say, “sometimes we have to laugh so that we don’t cry.”
As George understands, and Tracey, too, what better choice do we have?
_____
Photo by Ben White on Unsplash
Allan Cole is a professor in The Steve Hicks School of Social Work at The University of Texas at Austin. Diagnosed with Parkinson’s in 2016, at the age of 48, he serves on the Board of Directors at Power for Parkinson’s, a non-profit organization that provides free exercise, dance, and singing classes for people living with Parkinson’s disease in Central Texas, and globally via instructional videos. He also serves as a Community Advocate for ParkinsonsDisease.net, writing columns about living well with Parkinson’s. He is author or editor of 10 books on a range of topics related to bereavement, anxiety, and spirituality. Currently, he is writing a book on counseling people with Parkinson’s disease, which will be published by Oxford University Press.
Follow him on Twitter @allanhughcole