You are stunned to hear you have Parkinson’s disease.
You are a certified Person With Parkinson’s (PWP), or a Parkie, as I prefer to be called.
Your options are just two: 1. Take to the couch (or recliner) and let the disease grind you down one bodily system at a time. 2. Get vertical, get moving and engage the Beast at every step of your journey. Counter punch the bastard. Dizzy him with metaphorical jabs, hooks and upper cuts. Take back a portion of the ground he has gained from you.
That’s it. A stark, binary decision. Fight or melt away.
This Call To Action is about my choice of Option 2.
I will try to answer the two questions I get most often.
“I’ve just been diagnosed with Parkinson’s. What will happen to me?”
“What’s it like having Parkinson’s?”
I will offer no easy answer to either. But I will address both.
PD is an ultimately unknowable condition. Each case is unique to the person. Even the numbers are approximations. One million cases in the U.S. Seven million worldwide. Fifty thousand new cases a year in the U.S. Second most common neurological disorder after Alzheimer’s.
One million cases in a nation of over 320 million persons. A mere drop in the bucket, right? High public awareness of PD suggests otherwise.
I speak often to civic organizations about PD. I invariably ask: “How many of you know someone with PD?” Routinely, a third or more of the group raises their hand.
What about the question “What will a PD diagnosis mean in my life?” The best answer I can give is “everything.”
My stab on the what’s-it-like question is this: Every day with PD is different. Funky, sometimes. Apathetic, others. Disorganized, frequently. Sometimes, even the old “normal”.
Rarely is there a reason to explain the difference, except one: STRESS. The more stress, the greater the intensity and number of symptoms. Less stress, fewer and milder symptoms.
I will share my experience since diagnosis in 2014 at age 75. I was a semi-retired journalist, executive director of the Florida Society of News Editors and part-time college professor in Tampa, FL.
I retired in 2006 as president and publisher of the then-thriving Tampa Tribune (now shuttered). Previously I was executive editor of The State newspaper in Columbia (SC) and editor of The Sun News (Myrtle Beach (SC). Before that I was a senior editor of The Charlotte Observer and a Washington correspondent for 12 years. At diagnosis I was Clendinen Professor of critical writing at the School of Mass Communications, University of South Florida.
My university was Duke (history major and pre-med). Intending to be a physician, I successfully completed two years of classes at Cornell University Medical College. I decided instead to become a health and medicine reporter, which became my specialty as a Washington correspondent. (Associated Press, Consumer Reports, Chicago Daily News)
It was impossible to imagine then how my medical training and writing would sharpen my sparring with PD 50 years later.
I have chronicled my PD journey on my blog www.shufflingeditor.com. The shuffling refers to my foot-dragging that kicks up scatter rugs.
This modest undertaking makes no effort to be encyclopedic or definitive on Parkinson’s. It is one man’s (and his wife’s) story of counter punching the many assaults and disabilities PD has dealt me. I will recount my strategies and workarounds to stay upright, moving and productive.
My fundamental message is take aggressive action, shape your future, don’t be a victim. Persevere.
I owe a huge debt of gratitude to Diane Cook, the Parkie genius who developed an enormously powerful training program that has guided me in my journey. It equips Parkies with the knowledge and mental tools to ease the symptoms of this progressive, incurable but treatable condition.
My second debt of gratitude is to the founders and practitioners of Rock Steady Boxing. It’s a PD therapeutic training program that goes well beyond punching a heavy bag. My book title comes from Rock Steady experience.
The words I live by are Love, Laugh, Hope, Pray, Persevere.
The tone of this book is meant to be informal and sometimes cheeky- – like the newsroom cultures I so love. I expect you will sometimes find me venturing too far out the verbal diving board. Forgive me.
I hope the experience I recount will give fellow Parkies a few useful tools to counterpunch PD, a wicked disease indeed.