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An Essential New Book On PD

Editor’s note: This column was written for a general audience. The COVID-19 pandemic has pushed this remarkable book out of consideration at mainstream news outlets. Please tout it to your PD colleagues.

The odds of a person developing Parkinson’s disease over a lifetime are 1 in 15.

It is the fastest growing neurodegenerative disease and is overtaking Alzheimer’s for the top spot.

That stunning growth curve foreshadows bankruptcy for many health-care systems, said Dr. Michael S. Okun of University of Florida health, a leading international expert on Parkinson’s. He is one of four authors of the authoritative new book “Ending Parkinson’s: A Prescription for Change.”

That bleak future can be brightened if the Parkinson’s community organizes and forces changes like those in successful campaigns against polio, HIV and breast cancer.
“We need to stand up and make noise,” Okun said. “Parkinson’s sufferers, their families and the professional care community must be as charismatic and disruptive as we can be.”

Agitation and disruption are not words commonly associated with PD. The disease itself often produces passivity, depression and apathy.

Parkinson’s is the second most common neurodegenerative disease after Alzheimer’s, which it is fast overtaking with an estimated 6,000,000 cases worldwide today.

PD is especially baffling because no two cases are the same. The malady is difficult to diagnose and demands individualized treatment plans for optimum care. (Optimum care is difficult even now due to a shrinking supply of neurologists trained specifically to treat Parkinson’s.)

Parkinson’s stems from death of nerve cells in the midbrain that produce dopamine and from deposition of an abnormal protein called alpha-synuclein in many brain regions.

Dopamine helps control movements, such as walking, and can affect many other internal systems, including urinary, gastrointestinal and equilibrium/balance.

“The disease has multiple causes including environmental hazards — air pollution, some industrial solvents and particular pesticides,” write recognized Parkinson’s experts Drs. Ray Dorsey, Todd Sherer, Bastiaan R. Bloem and Okun. (Okun is Executive Director of the Norman Fixel Institute for Neurological Diseases at UF Health.)

“In addition, certain genetic mutations, head trauma, and the lack of regular exercise increase risk,” the authors write. “Up to 40% of people with Parkinson’s will eventually require nursing home care, and the caregiving burden is immense. Life expectancy is reduced modestly and many die from falls or pneumonia.”

The book’s “Prescription for Action” is this: “We must form a PACT to end Parkinson’s. This PACT will Prevent the disease, Advocate for policies and resources, Care for all affected and Treat the condition with new and more effective therapies.”

Current federal research funding for Parkinson’s is about $300 million and must increase 10-fold, said Okun.

“Ending Parkinson’s Disease” (Public Affairs, Hachette, 2020) is a stunning and important work deserving urgent attention from Parkinson’s fighters, their families and health-care policymakers.

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Parkinson’s Pro-Activities Daily

Covid-19 has upended normal life, Parkinson’s people no exception. Our New Normal is connection, fellowship and camaraderie using digital tools and venues.

Our new public square is Parkinson’s Pro-Activities (PPA, for short), emailed to you each morning.

PPA offers several quick bites of ways to exercise, stay in touch, laugh and explore and learn new things in these days of social isolation. Daily offerings are themed this way: Social Sunday, Movement Monday, Traveling Tuesday, Wacky Wednesday, Thoughtful Thursday, Fantastic Friday and Scientific Saturday.  Rock Steady Boxing Certified Coach Linda Lawler will curate the exercise/Movement Mondays.

Struby Thelen and Mark Lawler are its editors. PPA is the creation of the Me Over PD Foundation (MOPD).

It will close its doors when social restrictions are lifted, and we resume normal interactions.

To subscribe, click HERE.  In the email include your name, city, and email address.

I’ve also added a Pro-Activity button on the bar across the Shufflingeditor.com site.

 

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Covid-19 Rewires The Change Guy

For better or worse, my name and the word change have walked hand-in-hand since 1980.

As a newspaper editor, I initiated or helped lead reform efforts that included teambuilding, Public Journalism, multimedia journalism, and convergence of media platforms.

Name the “nostrum,” as my critics labeled them, and I was on the frontlines of advocacy to upend our craft’s encrusted and increasingly out-of-touch ways. 

Comes now Covid-19.

The behavioral restrictions from Covid-19 have compromised my ability to manage change — big and small flavors.

Due to my Parkinson’s, I find it difficult to adjust to the disruption of my daily routines that our “New Normal” requires.

I find myself, uncomfortably, to be an Anti-Change Guy.

For example, I relish physical contact with people. I am (or was) a hand-on-the shoulder toucher and greeter. That extroverted need of mine is blunted by our new social distancing requirements.

Digital replacements for in-person contact are ingenious and helpful for many. But not for this Parkie.

I experience most Zoom video interactions as weird and unsettling. My intimate and joyful Sunday School class was emotionally flattened beyond recognition for me when we met virtually.

Parkinson’s for many sufferers results in sharp curtailment of our ability to juggle tasks; diminished ability to respond appropriately to changed circumstances; and rotten short-term memory—like where did I leave my car key?

My ill-fated trip to Philadelphia in September is my car-key, deluxe story. While trying to manage the demands of TSA in the Atlanta airport, I unknowingly dropped the leather purse containing my car key.

Miraculously, it was found and returned several days later. But those were anxious hours between loss and recovery.

On the return leg of that trip, I paid my taxi fare, plus tip, with my MasterCard. Much later, I was paged in the Philly airport to return to check-in. My extraordinary taxi driver had found my credit card on the back-seat floor. His frantic mission was to return it.

The card had slipped from my Parkinson’s numbed fingers. Never felt it drop.

My driver would not accept my further tip.

I write this post without joy. I grudgingly acknowledge Doc Parkinson’s relentless drive to drain sufferers’ control of our lives.

But in the glorious words of a fallen colleague: “We must never, ever give up fighting The Beast.”

I will find ways to adjust to the “New Normal.” Bank on it.