Parkinson’s Disease as a Dynamic Disability

By Steven Eury, Bened Life Parkinson’s Expert and World-Renowned Milkshake Chef

Are you new to Parkinson’s Disease? Welcome to the club. No, not a fun club, so to speak. While the club has its dynamic progression and can be quite different for each person, it doesn’t have to take your joy.

Depending on your length of time since diagnosis, your lifestyle, your diet, and your outlook can drastically affect both the symptoms people see and those hidden symptoms that most are not privy to. The following are my off-the-cuff, generalized thoughts about what Parkinson’s does on the inside and outside, as well as the interactions that us “Parkies”' can have with our fellow man.

The Roller Coaster Ride

Parkinson’s disease, much like the aptly named Young-onset Parkinson’s disease (YOPD), is like riding a not-so-fun-sometimes roller coaster ride of both symptoms and treatment effects.

Such as: you can have protein, but not too much protein. You can handle mild stress, but not significant distress. You can indulge in sugary treats, but not by the fistfuls, as your dopamine-seeking brain wants. You can move smoothly and talk normally until suddenly you can’t.

When a person with Parkinson’s is in the “on state,” as it is referred to, symptoms can in some cases totally disappear, depending on your individual disease progression. By “symptoms,” I mean commonly: trembling of the hands, slow movements (bradykinesia), low voice volume (dysphasia), shuffling gait/walk, medication-induced abnormal movements (dyskinesia), and trouble swallowing. This is not anywhere near an exhaustive list, but you get the point. It really sucks.

When the meds kick in and start to be converted to dopamine inside your brain, it causes you to appear at first glance non-symptomatic. Meaning, you have very minor, if not completely unnoticeable, tremors, a more normal volume of voice, and smoother movements, like walking while swinging your arms.

The standard treatment for PD hasn’t changed for over 63 years. Even though it’s older than Moses, pharmaceutically speaking, the combination works and works well…until it doesn’t (more on that at another time). It allows a person with PD to move, hold still, move smoothly, and speak above a whisper.

While the meds help on the way up to the top of the metaphorical roller coaster, once you're at that point, the ride becomes disorganized and extremely bumpy. For no reason at all, you can go from in-control to a totally dyskinetic mess. Arms flailing or seemingly dancing to a song that neither you nor anyone else can hear. By the way, this dyskinesia is Parkinson’s BFF; it’s the jerky treatment-induced movements.

Yes, you read that correctly: the meds that help with your motor control problems cause more motor control problems. At least there’s someone dancing at the party, no matter how bad the DJ may be.

"Don't worry ma'am. You can't catch what I've got."

Thankfully, people out in public like the grocery store or mall, for the most part, are understanding. But that doesn’t mean you don’t receive a few worried looks. Some people are downright sweet, saying things like, “Are you OK sweetheart?” and, with a concerned look on their face, “You good? Everything ok?”

I just go with it most of the time. It’s actually quite amusing when you think about it.

One chilly evening, I was purchasing some goods at a local department store, and the kindhearted clerk checking me out at the register said, “Sure is cold today,” looking at my hands trembling. “You should have worn a coat.” I just grinned and chuckled.

For the most part, decent people are everywhere. They can see how slowly I’m moving (bradykinesia) as I try to put on my coat. Or they see me struggling against my tremor to take out my debit card, and they wait patiently. Sometimes they offer to help me if they see me trying to do something that requires fine motor skills, like turning a key or filling out a lengthy form. I really appreciate those people. I appreciate the helping hand that keeps other people from waiting on me.

You can’t be prideful with Parkinson’s. Acceptance is key. Just let kind people be kind. This is good for their own spirit. The added benefit is you get to give up a struggle, however minor. Trust me, throwing a set of house keys across the yard or yelling at pencils and paper has gotten me nowhere in the past.

It is what it is.

As a person who has had PD for over a dozen years starting at age 30, I’ve learned you just have to roll with it all. Laugh. Love. Let the tremors come, then take your meds and celebrate while they’re gone. One thing’s for sure, the symptoms will be back. The most important question that has to be answered is: how much fun did I have on that ride?

About the author: Steven “Why Are You Shaking” Eury

40ish year old, father of 3 teens (prayers welcome). Gratefully married to the hottest woman on the planet, Allison Toepperwein-Eury; who by the way, also has YOPD. Likes to joke that he was voted “Top Egg Scrambler” by US Egg Scrambling – Tournament Practicum (USES-TP). He has been gifted naturally with expert-level four-leaf clover finding abilities. #InLoveWithParkinsons #litwithin www.litwithin.com @LitWithindotcom

Featured image by Allison Topperwein-Eury