PD Went to Work

Parkinson’s Disease (PD) robbed me of so much since being diagnosed at the age of 46 in May 1996. I was determined not to allow PD to steal my position as coordinator of volunteers at the University of Colorado Hospital in Denver.

It’s a typical work day for PD and me in January of 2006. It’s difficult to get out of bed because of the stiffness of PD. I take my first dose of Parkinson’s meds at 6:00 AM so that I can get on the road an hour later, hoping by then my meds kick in. I never know when, if or how much of the medication will take hold. I leave the house, get in my car, turn on the ignition, and drive to work. I don’t feel safe to drive. My dystonic (cramped) toes are turned under. My reaction time while driving is slow. I am relieved that the driving conditions aren’t too difficult today as it often can be tricky with clogged snowy roads and snarled traffic. The previous year, I traded my stick shift car in for an automatic which is easier for me to maneuver.

Arriving at work at 7:50 AM, I discover that my meds are only partially working. I shuffle from the parking lot to the volunteer office in the hospital, hoping that I don’t see anyone while en route. “So far, so good” becomes my mantra.

Usually, one of the volunteers, a retired high school principal, conducts the orientation of new volunteers. But since she is unavailable today, I am in charge. I set up the orientation cart, make sure the TV is secure, the video is rewound, organize the manuals, gather the refreshments and push the cart over to the orientation room in a different part of the hospital. I am five feet tall while the cart is six feet, so I peek around the side to avoid hitting anyone or anything. I set up the video machine to ensure it is operating properly.

I return to the volunteer office to greet the new volunteers. Holding the camera with my shaky hands, I take their pictures and accidentally cut off their heads in the blurry photos.

After all the volunteers arrive, I escort them to the orientation room. Dragging my left leg, I hope that no one notices. I surreptitiously take my second round of medication. My meds work for about three hours, and I take only four doses a day, or otherwise, I have the dyskinetic flailing of arms and legs and the head-rolling movements of PD’s poster boy, Michael J. Fox. Four doses a day at three hours per shift translates into twelve hours of “on” time a day. But I can never predict if I’m going to be “on” or “off.”

The orientation is from 9:00 AM until 12 noon. At 11:30 AM, I start feeling a little woozy when the medication slows down. I feel like a drunk Cinderella, keep my eyes on the clock and worry that my carriage will turn into a pumpkin at the strike of noon. I struggle to enunciate my words but slur them instead. My left hand begins to shake. I shove it into the pocket of my burgundy dress and realize there are no pockets. I grab for the table as though it is my life boat. Two of the volunteers in the orientation look at each other and giggle. I’m humbled by the stares of the others that shout, “What’s wrong with you?” When the orientation is over, I march the volunteers through the hospital on an obligatory tour.

When the tour is done and I return to the volunteer office, two volunteers want to discuss their assignments. It is only 12:30 PM, and I am already exhausted. I am relieved that my boss isn’t around to witness this. I struggle until 3:30 PM and stumble back to my car in the parking lot. I drive home without incident. At 4:30 PM, I sack out for the night and wake up at 5:45 the next morning, only to begin the new day like the previous one. My husband Tom and I haven’t talked for twenty four hours because I’ve been sleeping or working.

I worked for ten years after I was diagnosed in May of 1996. I retired because of PD in May of 2006. In reflecting on this experience a year later in May 2007, I was proud that I fought the good fight like a PD warrior for as long as I could.

Comments

[Joe]

I don't know what to say. I am both proud of you for "fighting the good fight" and terrified at my own future. Everything you said sounds so familiar. I wonder, every day when I get out of bed and go to work, how much longer do I have before I have to stop working? How much longer will I be able to drive?