Parkinson's Disease, Uncategorized

The (Covid-19) World According to Garp

 

My memory bank brings me the odd word pair: “Under Toad.” There’s no reason that I can discern for Under Toad’s recent appearances.

Under Toad is the literary invention of John Irving in his 1978 tragi-comic novel “The World According To Garp.” I read the book 40 years ago. Loved it.

The title character’s son Walt mishears warnings about the undertow at the beach as a warning about an “Under Toad.” Father T.S. Garp employs Under Toad henceforth to refer to the omnipresent threat of disaster that he sees lurking beneath the surface of everyday life.

My friend Rich Harwood has been traveling the country promoting his latest book “Stepping Forward.” It is a compelling call to action for citizens to step up and rebuild their communities.

He describes people “slogging through” their days due to Covid-19 uncertainties and disruptions. I believe Rich’s “slogging through” is the Under Toad at work in our lives. Imagine the sensation of walking in wet cement.

I am privileged.

I write on the screened-in porch of our 2,700 sq. ft. cottage shaded by 100-foot pines and 50- foot oaks. I listen to the songs of the American Golden Finch, Blue Jay, Northern Cardinal, Chipping Sparrow, Pine Warbler and Tufted Titmouse. I watch the birds’ choreographed, flaps- down landings on our five bird feeders.

My wife and I live in Carlyle Place, a life plan community in Macon, GA. The 58-acre retirement complex has a common area of apartments and care units. Ours is one of 59 cottages that ring “The Big House.”

For all the protections Carlyle Place provides, we can’t escape the “omnipresent threat of disaster” from Covid-19.

It hasn’t breached the secured walls of our gated community. But we have a kind of hermetic seal around our lives.

Visitors are sharply limited. Distancing restrictions limit our ability to meet in groups larger than four. Masks are to be worn when we walk the bucolic grounds.

Parkinson’s sufferers like me are managing a second Under Toad. That’s Old Doc Parkinson’s penchant for throwing bean balls at us. Think lightning strikes of hypotensive lightheadedness or bladder overflow.

In the movie version of “The World According To Garp,” Robin Williams starred as Garp.

Williams died in 2017 with Parkinson’s.

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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.

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2019 Report to Middle Georgia Parkinson’s Community

 

The Parkinson’s Community in Middle Georgia—you fighters– stepped up to wallop a bunch of homeruns in 2019.

The 50-plus graduates of the  Parkinson’s study-and-action group successfully advocated for the introduction of the acclaimed PD exercise and treatment program, Rock Steady Boxing. The Macon-Bibb Parks and Rec program quickly became over-subscribed, necessitating a waiting list. Navicent Health assisted this effort. 

Members of the Parkinson’s Community–now over 100–spoke to Mercer Medical School students in Macon and Savannah about our  fast growing, complex and disabling condition. Those young doctors gained the necessary knowledge to diagnose and quickly treat PD when they enter practice When many doctors diagnose Parkinson’s now, they omit any actionable information about the condition, saying only  fill this prescription and return in three months. Sufferers are left to anguish about what will happen to them and their family.

Our Community addressed that information vacuum in an unprecedented   way. We won  a $10,000 grant from the Peyton Anderson Foundation of Macon to distribute an easily understood primer for newly diagnosed patients.

Some 2,000 copies of “Counterpunch: Duking It Out With Parkinson’s” were distributed to 373 medical offices throughout Georgia connected with Mercer Medical School. Medical Dean Jean Sumner’s strong leadership drove the program.

Mark Lawler, our digital information leader, completed his mission of strengthening our monthly support group hosted by Navicent. Attendance has routinely increased four-fold and more.

A fifth initiative carries over into 2020. It involves using the reach of telemedicine to compensate for the absence of any practicing Parkinson’s specialist in Middle Georgia.

National Parkinson’s specialists warn of a coming “Pandemic” of new cases in the next 20 years, with a doubling of incidence worldwide.

Their fervent words come as the supply of neurologists specializing in Parkinson’s and related neuromuscular disorders is dramatically shrinking. A neurology consultant calls this demand-supply imbalance a “Perfect Storm.” 

Only 50 neurologists are training in the U.S. to become Parkinson’s specialists (Movement Disorder Specialist or MDS). That number barely touches the retirement rate of current specialists.

That shortage helps explain why only an estimated 10% of Parkinson’s patients ever see an MDS. Another 30% see a neurologist of some kind. The remaining 60% are treated by a generalist, gerontologist–or sadly receive no treatment.

Patient education and self-help efforts are growing worldwide. The Parkinson’s Foundation and Davis Phinney Foundation are placing new emphasis on assisting grassroots education and patient empowerment efforts such as ours in Middle Georgia.

They tell me that they like our innovative work together as a community.  And we’ve just started finding ways to defy The Beast we share.

Happy New Year,

 

Gil

 

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Cancer’s lessons for Parkinson’s combatants

My wife Struby Thelen is knocking the piss out of breast cancer. Her wide network of survivors includes Desiree Rawlinson. Rawlinson has written remarkably about her journey. Her lessons learned fit hand in glove with the travails of Parkinson’s combatants. They follow.

I was diagnosed with breast cancer on July 16th 2018. Here is what I have learned since then:

  1. Cancer is a wicked bitch. She does not discriminate. Young or old; male or female; she simply does not care.
    2. There is no cure. You can be in remission, but without scientific breakthroughs, you will never be able to say “I am cancer free”.
    3. The you that you were before cancer is gone, she no longer exists. Cancer changes you, physically, mentally, emotionally. Finding your “new normal” is a battle all its own.
    4. Take care of your body, it’s the only one you get. If something seems off, get it checked out.
    5. Advocate for yourself!!!
    6. Cancer is cancer. It does not matter what stage or what type. One is not less than another. We all have our own fight.
    7. You are never alone. There are literally thousands of people around you fighting a battle similar to yours! Cancer is definitely not a group anyone wants to join but there is so much support from those fighting this disease. Ask questions! Reach out! You do not have to walk this path alone.
    8. Let the little stuff go – for real. It doesn’t matter at all, I promise.
    9. Life changes on a dime. Cherish each day, they are precious and few.
    10. Assume that everyone you meet is battling something just as big and scary as you. You have no idea what someone is going through and no one should have to tell their story to be treated with kindness.
    11. You are stronger than you know.
    12. Never give up.

Love to you all and thank you for being a part of my journey.

 

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Stronger Together

I was looking forward to, and fully prepared, for our Parkinson’s potluck lunch the first Saturday in November. Or so I thought.

Unanticipated was the ginormous emotional openness and laughter that would fill every room in the gracious home on Stanislaus Circle in mid Macon.

I had expected camaraderie. Huge waves of affection among the Parkinson’s Fighters, not so much.

The 40-plus men and women represented a large slice of the organized Parkinson’s Community in Middle Georgia.

There was Sarge, the taciturn and very tough Army vet from Perry, holding court in the dining room.

In the living room, Fred and Mary Ann energetically introduced a newly diagnosed friend, their local newspaper editor in Fort Valley.

The lawyers’ caucus exchanged notes in the breakfast room about downsizing from their large homes.

The Rock Steady boxers made merry around the pool, punctuated by the bark of Sam’s signature laugh.

Those defiant people proved again the under-appreciated power of social connections to combat chronic disease and extend full lives.

The Community had reason to celebrate. They had moved the PD equivalent of small mountains in 2019.

Foremost was the breakthrough distribution of 1,800-plus copies of my and Struby’s book “Counterpunch” to over 360 frontline medical practices throughout Georgia connected to Mercer University School of Medicine.

A $10,000 grant from the Peyton Anderson Foundation of Macon made possible that unprecedented information outreach to Parkinson’s patients, new and existing.

A close second was the astonishing enlistment for the new Rock Steady Boxing affiliate in Middle Georgia. Forty-two boxers and care partners are active enrollees, the vast majority coming from our Parkinson’s education and engagement programs. Rock Steady is the proven, premiere, exercise therapy program for Parkinson’s.

The pioneering, ground-level work of my foundation (Me Over PD) is especially important with the projected flood of new PD cases – just as the number of top-shelf, PD experts is declining precipitously (none in Middle Georgia). PD experts are warning this mismatch of demand and supply is a “Perfect Storm” and a “Pandemic” in the making.

The PD Community’s planned work for 2020 includes resuming Study/Action training when feasible, increasing the frequency of the potluck reunions, meeting again with Mercer Medical students and continuing to make “Counterpunch” available to medical offices working with Mercer and beyond in Georgia.

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Parkinson’s Steals My Fingers

I wrote last about how vigorous hand exercises restored a measure of fine motor skill in my fingers. I could again handwrite.

The implacable Parkinson’s Beast within did not like my small victory.

It bit back. Hard.

I took a three-day trip to Philadelphia in late September. I traveled alone due to my wife’s grounding for chemotherapy.

Arriving in Philly,  I realized the small pouch containing my car and house keys was gone. I had unknowingly dropped it going through TSA security in the Atlanta airport.

Returning to Atlanta, I used my credit card to pay for the taxi ride. I was paged at the airport. The virtuous taxi driver had found the card on the floor of his back seat. He was frantically trying to return it.

Only then did I fully realize what had happened. I had lost all feeling in both hands. That remains the case.

The key pouch was found in the Atlanta airport and returned to my Macon home by FedEx.

My touch has not been returned. That bastard Parkinson’s has it.

 

 

 

 

 

 

 

 

 

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Teeny Tiny Handwriting Be Gone

Fellow Parkinson’s Fighters,
My most puzzling PD symptom before diagnosis was a leathery feeling in my hands.
Imagine wearing thick work gloves to a restaurant. My “gloves” made it difficult to cut food, sign the check, handle my car keys.
My hand writing was illegible. Buttoning just a memory.
That was my life until mid-August. It isn’t now.
Untouched in my computer had been an article about hand exercises for Parkinson’s sufferers. I opened it and tried the exercises.
Wallah! Bingo!
In two weeks the work gloves were traded for the the feel of a fine pair of cabretta leather golf gloves.
Handwriting is again legible. I’m cutting my food and fumbling less handling small items of daly life.
I’m not yet buttoning very well. Perhaps that recovery is next.
I can only surmise what is happening physiologically to explain the incredible results.
Not enough time has passed to make this a neurogenesis event. Perhaps he answer is enhanced blood flow in my hands.
Here’s the URL for the article:
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$10,000 Grant to Distribute 2,000 copies of “Counterpunch”

My MOPD Foundation has received a $10,000 grant from the Peyton Anderson Foundation of Macon.

The funds are for purchase and eventual distribution of 2,000 copies of “Counterpunch” to 360 frontline physicians around the state allied with Mercer Medical School. Each physician will receive five books to form a lending library for patients.

I believe this project is a first in the country. I salute Mercer Med for its leadership under Dean Jean Sumner, a noted rural health activist.

Distribution will begin to physicians in Macon-Bibb with a Sept.1 target date. After evaluation and process validation, we will complete distribution to remaining Georgia offices in person or by mail.

This is a great win for Parkinson’s sufferers today and to come. Parkinson’s people rarely receive information about their condition at diagnosis and are abandoned to the wiles of the internet and worse. I believe “Counterpunch” provides the information needed to take action against this mystifying malady, The Rodney Dangerfield of diseases.