Dancing in the Rain: Lessons Learned on my Personal Journey with PD (more at www.PDPlan4Life.com) Copyright 2013-20 Sheryl Jedlinski
As a “newbie,” I could not look at people with advanced Parkinson’s without imagining myself in their shoes, and that was a very scary place to be. Believing I was the only person with Parkinson’s who felt this way, I was plagued by guilt and shame, and dreaded the day newbies would find me too scary to look at. These feelings are the “white elephant” in the room that no one acknowledges, although we all have them.
Now, 15 years into my journey with Parkinson’s, my newbie days are distant memories, as they are for the many friends I’ve gathered along the way. Time has not been kind to us, as our tremors, dyskinesia, and unsteady gait have grown increasingly visible and disabling. We have had to come to terms with not knowing how our bodies will behave from day to day, and with not allowing this uncertainty to keep us from doing the things we enjoy most — shopping and dining out. We have sworn to leave no one behind, alone in their house, no matter how difficult mobility becomes. Our motto is that of The Three Musketeers: “All for one, and one for all.”
Those who opt to ride with us must make concessions. First and foremost, they must allow extra time to get where we’re going because we don’t do freeways, and we stop at every clean, accessible public bathroom along our route. They must also cultivate an appreciation for “black humor.” Laughing at the daily challenges we face, gives us power over these and makes our lives seem less challenging. When one of us started falling a lot, without breaking anything or suffering a head injury, I took to joking that she leads a charmed life.
Making the unfunny funny is my way of stuffing my fears into an emotional black hole. When they resurface, I indulge myself with a double chocolate malted and yet another viewing of Beaches. No matter how much we try to pretend otherwise, our symptoms do progress, albeit at vastly different speeds. Our doctors adjust the dosage, timing, and combinations of our medications to buy us more functional time. We dread the day when they will say there is nothing more they can do for us. The good news is today is NOT that day. Many promising new drugs are currently in the pipeline, keeping alive our hope for a cure. So, in the meantime, let’s hold each other close, be thankful for our friends and families, live in the moment, and put our talents to work to benefit the extended Parkinson’s community.