Quit the Quick Quips

I live with a teenager. When he speaks, a one-word grunt is typically accompanied by a shrug. On the rare occasion that a full sentence streams out aloud, it’s riddled with middle-school speak. A combination of texting abbreviations and lingo known only to eighth graders streams out with a tone that emits coolness.

The word-nerd in me isn’t satisfied with the coolness factor of the delivery and tries but often cannot parse the meaning.

Since there is no Teenage Awareness Month and April is Parkinson’s Awareness Month, I offer the meaning behind a few PD catch phrases.

“I have Parkinson’s, but it doesn’t have me.”
“Parkinson’s: Fight back.”
“Parkinson’s is a word, not a sentence.”

Each seems an upbeat summary of what it takes to live well while living with the disease. I’ve used them. But on closer inspection, they’re much like the language of my son with more meaning in the delivery than the words themselves. I’ve learned that to understand what my teen is actually saying, I need to ask questions and listen to what’s behind the spiky hair and Hey, chill ‘tude.

I’m checking my feel-good ‘tude at the door. To expand on these PD catch phrases and offer a glimpse into my world with PD, I step from behind the meds that allow me some functioning in the world I call ‘normal.’

“I have Parkinson’s, but it doesn’t have me.”
From where I stand – early in my second decade with this degenerative disorder – it most definitely has me. It has a hold on every aspect of my day.

I’ve used this phrase to clear the awkwardness that intrudes the air when a stranger stares at my drunken gait, a relative offers advice or I just tripped over my own feet that didn’t move when my body did.

PD is awkward and intrusive. It determines what I eat. It wakes me in a torturous manner, never allowing for more than two hours at a time. It joins me at the grocery store, to restaurants, on a walk with the dog. I consult it before making a schedule and again when having to rework the schedule because meds don’t kick in. I’ve been late to appointments where I was there in the parking lot but couldn’t get out of the car.

In this world of Parkinson’s in which I live, it has me. To say it doesn’t is to diminish the times I’ve crawled to the bathroom as ridiculous and undignified. It has me. It has me working around its controls. Most people walk to the bathroom. Me too. Except for when I have to crawl there.

“Parkinson’s: Fight back.”
It feels good to hit something once in a while. Like a boxing bag. And this statement may feel good for someone recently diagnosed who is desperate for a rosier glimpse into their future.

But actual fighting implies body contact with the opponent, a state of mind that plots the downfall of the enemy, election year campaigns.

I’d be pleased if Parkinson’s retreated, vaporized or called out “Uncle.” However, I don’t fight Parkinson’s. First, there’s the fact that, since it still has no cure, I’m pretty certain which of us would win. But, also, with each day a gift and a limited length, I choose to put my efforts into joyful moments not into punches, negative thoughts or retaliations. Isn’t there enough anger and violence around? (Did I mention election year campaigns?)

Exercise helps. But that’s not fighting. That’s riding a bike, hiking, running. It feels good to feel strong. When I freeze mid-way between the dishwasher and the sink, the kitchen doesn’t become a battlefield. The kitchen remains the same but for that woman standing still in the middle of it. The best way for me to continue on to the refrigerator is to use the strength in my arms to brace on the counter while urging my legs to step back in.

Diet and meds help, too. A service dog and understanding family and a sense of humor also aid in powering through. I’m not fighting, I’m determined to include a bike ride or leftover pie from the fridge into my day.

“Parkinson’s is a word, not a sentence.”
Awareness is knowledge, understanding, empathy. When I sit with my teen and ask about his day, share aspects of mine, we talk. It is only then that I come to understand the meaning behind his monosyllabic speak.

To understand Parkinson’s is to see the people behind the meds. To get a glimpse of why funding and participating in research trials are important (studies need people with and without PD to take part), check out the listings at the PDF and the Fox Foundation. To learn about beneficial classes and programs, talk to someone at the APDA and Northwest Parkinson Foundation.

No, Parkinson’s is not a sentence. It is a conversation.