Starting Here

Of course I have no idea how my dad got Parkinson’s. But our family lore grows around this story:

Young, lively, and absurdly into sports, my dad spent most of his adolescence and early adulthood at local Boys & Girls Clubs. He orchestrated flag football, basketball, dodge ball—God knows how long that list is. He mentored. Truly, he loved it there. I think he would’ve lived in a gymnasium if he could.

My dad was the first in his family to go to college. His major: Parks and Recreation. His first job (besides McDonald’s and moving one refrigerator up a flight of stairs after which he vowed to get a degree so he’d never have to do that again): Associate Director at a local Boys & Girls Club.

Some of his mundane duties included bathroom cleaning and weed killing. No prob, dandelion. Something athletic about it. He tackled fields, sidewalks, garden beds, and, hell, throw it on like SPF, too.

The first three are true, anyway. My dad wore neither gloves nor goggles. He sprayed glyphosate repeatedly and supposedly for years, and…

And years later, on a strangely normal day, he woke up in his bed unable to move. He had three little kids. He had a house and a newish car. He’d quit/left/was fired from—the details as hazy as RoundUp—his job as an Executive Director of a large Boys & Girls Club. He’d recently upturned his career and bought a tavern, a lifelong dream. Arguably a bit of a nightmare, too. That’s another story.

Immobilized, sleepless; what was this thing?

My dad’s age of diagnosis is disputed by a key witness: my mom. He always told us “38 or 39”. She shakes her head. They were still married then, and she has reason to believe that at the time of her raucous 40th birthday bash (he wanted it, she didn’t, if that tells you anything), my dad was not living with the formal haunting of Parkinson’s. The anticipation. The wondering. The grief.

Like too many, he went to doctors for months and months, neurologist after neurologist. It was several billing cycles before he found an answer.

Finally, a young fellow fresh from medical school nailed it: “Parkinson’s?”

His senior colleague assessed my dad and disagreed completely. “Too young. Both of you”.*

*Dialogue added by author for dramatic effect*

Yet, all signs pointed to it: stiffness, restless leg syndrome, gait, that crab-like finger test. Then—carbidopa levodopa, the clincher. It helped his symptoms and soon created its own trail. Chemical for chemical.**

**The cavalier endorsement of glyphosate under pedestrian names like RoundUp still persists on the shelves of hardware stores large and small, despite the growing demand for permanent banning of its known toxicity.

It seems too suburban a beginning. Too casual to be causal. Think of the decades of lawns out there! This isn’t DDT or Agent Orange. Surely not all of these grass-keepers have a chronic neurodegenerative illness? From a mere chemical dot…to their breath, their gut, their brain?

Surely not all. But indeed some. Maybe even the one I’m missing so much today.

My dad and me on his 36th birthday. I’m inferring based on some visual details here that I decorated his cake; he enjoyed that blue tumbler either in celebration or recovery. No judgment.

Although I do hope to unravel some mysteries here, including when my dad was officially diagnosed, I won’t pretend to solve the potential causes of Parkinson’s. I don’t have it and I can’t speak to that experience. But I grew up with it. I tried to beat and understand and ignore and (add as many verbs as possible) Parkinson’s alongside my dad, even when I did not want to, had no idea what I was doing. And even now, almost two years after he died, I still find myself strategizing over his health. What if we tried this? This? This…

I’m still here, wherever Parkinson’s starts and ends. My research qualifications read more like “eldest daughter”, “volunteer”, “sourdough bread”, and “poetry”. But I’m here to share our labyrinthine journey of Parkinson’s, life, death, grief, and peace. There will be morbidity in the truth and I will warn the reader as best I can. As in now.***

My 29th birthday, and the photo I used to confirm my dad’s identity after he died. Not something I planned for.***

However, I’m here to write honestly, through art and practical resources, and some involve death. Things I wish I knew or forced myself to confront. I’m here especially for kids of people with Parkinson’s and young parents. I’m here for some DIY, maybe even levity, as my husband and I amble through our early ‘30s—new to parenthood, home ownership, a single income. And maybe I can be someone that I needed as a kid—as a daughter, a sister, a parent, and a caregiver.

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Forgive me, but I’m here to follow the sunflowers.

More on those next week. In the meantime, thank you for being here.

Bette Jane