When Parkinson's becomes a person

“It's my arm. In the shower. It just kind of shakes when I reach back to wash my hair,” my future father-in-law said. “Maybe it's a pinched nerve. I'll get it checked out.”

 

Without another thought, we moved onto other topics, like his recent retirement from Chrysler, where he'd spent his working life as a successful automotive designer. My father-in-law's brain was of the unique sort, in that it was both creative and logistical, very balanced. This quality allowed him to create and patent many of the very features those of you reading this use daily in your vehicles.

 

An hour or so later, my future family of in-laws, my then-boyfriend, Jon, and I sat down to dinner. It was a brisk fall evening in Bloomfield Hills, Michigan, about 20 miles north of Detroit. The night was quite cozy and perfect, Fall at its best. Thanksgiving and the beginning of the holiest season was a few weeks away. The diagnosis was even closer.

 

It was on the way back from my first Thanksgiving spent away from my family of origin, in a car at a gas station in Ohio, that my future husband would explain his unusually somber attitude, and why his mother had started crying as we said grace at dinner. We sat in a car, alone while the gas tank filled. Silence and pause thickened the air, and then Jon spoke. His father had been diagnosed with Parkinsons disease, the same demon that had claimed his maternal grandfather a handful of years ago.

 

Calm, and collected, and still in shock by his dad's diagnosis, my husband attempted to prepare me for what was to come. For what his mother would have to endure, again, but this time as wife, instead of a daughter. For what the whole family would have to shoulder, as a result of loving his father. It wasn't about how we'd have to care for him, or how we'd have to comfort him; it was about how much it would hurt to witness him.

 

My father-in-law's symptoms started with the typical tremor. It was virtually unnoticeable. Aside from his own struggle to come to terms with his diagnosis, he was pretty much the same man he'd always been – except, with a small tremor in his arm, and not even all the time.

 

With each year that passed, his Parkinson's crept more and more into his being. There were good months, in which it didn't seem to spiral downward too badly. But, for every good month, there was an equally bad one, in which he learned – we learned – of the newer and greater consequences of a brain affected by such a disease.

 

 

That word that's on the tip of your tongue? Forget it. That's where it will remain, like a almost-sneeze, that never comes.

 

The hands of a talented artist become a burden, because the artist's brain can no longer control them.

 

Eating a meal revolves around how eating may affect a Parkinson's patient in conjunction with when he takes his medicine. God forbid the individual have too much protein and not enough dopamine-inducing foods, like carbohydrates. His meds may not even work. Just the anxiety of thinking about what a new restaurant may or may not serve is enough to set a Parkinson's patient into a rappel of anxiety.

 

Parkinson's steals pace. You move slowly, or sometimes not at all. Or sometimes, too much, like Michael J. Fox, who suffers from dyskinesia, which is a side affect of some of the medications he takes.

 

Parkinson's robs empathy. The brain can no longer register the hows or whys behind someone's, or even one's own, emotions.

 

Parkinson's takes the voice. The brain can't tell the muscles to do what they're supposed to do, so therapy is often needed simply so an individual can maintain the ability to speak. And, when he speaks, the wrong words often come out, and not for lack of intuition. The Parkinson's patient knows the concept he wants to get across, but he no longer has the capacity to put it into words.

 

That all being said, now imagine you're Robin Williams. You've suffered depression your whole life. You've battled addition. And, the only thing that's gotten you though has been the ability to give the gift of laughter to others through your lightening wit, your rapidly interchanging impressions, which are always accompanied by movements even the most adept camera operators can't capture quickly enough.

 

 

Then, you're told you have Parkinson's.

 

You will lose the ability to empathize, and love – something Robin Williams did very well.

 

 

You'll lose your legs. You won't run from Camera A to Camera B.

 

 

You'll lose your arms, and all the waving around and expressing.

 

 

You'll lose your tongue, and your ability to manipulate it, along with your diaphragm when altering your personality to get a laugh.

 

 

Lastly, you'll lose your wit and speed. And, this is not a negative outlook. This is fact. Parkinson's slows down everything, both body and brain.

 

 

Can you even imagine how scared Robin Williams must have been?

I still see glimpses of my father-in-law in the hours his meds work. He can still pair paint colors like no one's business, and redesign the front entry way of my home in a detailed, architectural drawing, even if it takes him days to draw it out, intermittently, among all his highs and lows.

 

When his meds suddenly stop working, leaving nothing but the frozen shell of a man who could move just five minute earlier? I have also been the one to hold him for ten minutes as he tries to walk his lead feet down the two front porch steps at our house to get out to my in-laws' car. I've reassured him I can hold him, over and over and over again, as his anxiety rises and he fears he may fall. In those moments, the artist is gone. It's simply Parkinson's versus a man. A man I could carry down the steps, but won't. Of the little dignities he has left, this is one. He will walk.

 

And we, who love him, will wait.

For more information about Parkinson's, I've found the Wikipedia (http://en.wikipedia.org/wiki/Parkinson's_disease) explanation to be the most well-rounded. You can visit the Parkinson's Foundation Web site, but I feel good ol' not-usually-totally-reliable Wikipedia does a pretty good job of describing the neuropsychiatric symptoms of it. And, these are symptoms I don't think the general public is familiar with. In my opinion, they are by far the most crippling.