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The Clarifying Power of What Next

Two words preoccupied me. What and Next.

I awakened with thoughts like: More fires today? More hurricanes? More political strife? More unnecessary Covid-19 deaths? More economic blows?

Those questions had me on the wrong path, wasting time on matters I can’t control.

Instead of feeling acted upon, I needed to drive action in a vital cause, one within my reach. That cause is the wellbeing of my fellow Parkinson’s disease sufferers.

Covid-19 has disrupted personal contact within Parkie communities, perhaps for years to come. That lost comradery was powerful “medicine” pushing back at Parkinson’s. (My MeOverPD foundation will resume our in-person work in Georgia and Florida when possible.)

My altered path centers on involvement with a new global PD community named PD Avengers. (www.pdavengers.com)

Now numbering 500-plus, PD Avengers’ goal is to mobilize the millions of people touched by Parkinson’s to prevent, advocate for and treat this fast-growing malady. Technology like Zoom is the tool for wiring our community.

Two powerful messages reached me last week that reinforce my course.

The first was from Emily M.D. Scott, a peripatetic, Lutheran minister. She reflected on the travels of Jesus’ Twelve Apostles.

“These solitary travelers journeyed in situations of great uncertainty, much like our own,” Scott wrote. “Their destinations may have been clear, but their futures were less so. Somewhere along the way, however, they always encountered something unexpected: the astonishing presence of the sacred. 

“Instead of clamoring to go ‘back,’ we can turn, and face into a future that is uncertain, but rife with possibilities to build a world that is more compassionate. There are others on the road ahead of us: the protesters who’ve flooded our streets, risking their health to call for a nation free of racist brutality. They can see a new world.” 

The second message came from Rich Harwood, president of the Harwood Institute. (www.theharwoodinstitute.org) He is my great and good friend. His life mission is building outward-focused, strong, resilient communities. His latest best-selling book is Stepping Forward.

His email concerned why personal resiliency alone is not enough to see us through our perils. 

“The challenges before us demand a shared response,” he said. “And let’s be clear: no one leader, organization, or group can address the fault lines that exist in our society. None of us during a time like this (or any time) can go it alone, on our own. It never works. We need each other. 

“To build a more hopeful, inclusive society, personal agency is indeed critical, but shared agency is essential

“We must actively and routinely reach out to others for support, to work together, and to go forward together. In doing so, I cannot emphasize this next point enough: each of us must recognize that in times like these, small steps in the right direction are so important, as they get us in motion, and when we are in motion, we gain confidence, and new possibilities arise. We make room for progress, serendipity, and hope.” 

Thank you, Emily and Rich. You helped clarify my What Next.

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Okun&Companies Hit Two Homers With Parkinson’s Books

For Dr. Michael S. Okun, author as well as leading neurologist, this has been a smashing year. His name is on two books, each of which set new standards for excellence in Parkinson’s disease treatment and advocacy.

He and three other renowned Parkinson’s experts opened March with the acclaimed call to action, Ending Parkinson’s Disease. The second book, also acclaimed, came in August: Living with Parkinson’s Disease. 

“Ending” is a powerful indictment of how medical care systems worldwide have given short shrift to Parkinson’s and its 8 million sufferers. The book authoritatively writes the history of this fast-growing condition that will afflict 1 in 15 persons living today.

It zeroes in on the urgent need to limit exposure to the industrial chemicals—pesticides in particular—that are strongly linked to its cause. “Ending” calls for bold action to prevent, advocate for, care for and treat this bedeviling brain disease. In addition to Okun, the authors are Ray Dorsey, Todd Sherer and Bastiaan Bloem.

The four are willing into existence an international cadre of people determined to realize the four-part action plan.  Its name is PD Avengers. (pdavengers.com) I am one.

Okun‘s newest book “Living” is written with Parkinson’s experts Irene A. Malaty MD and Wissam Deeb MD.

The authors promise a “complete guide” to the infinitive mysteries of Parkinson’s disease for sufferers and care partners. They deliver in Living with Parkinson’s Disease.

“Living” is approachable, well organized, authoritative and invaluable. It’s reader friendly with pull out summaries, helpful margin notes, case examples, “clinical pearls for a better life” and a “concluding note” at chapter ends.

A just-diagnosed sufferer can get the guidance needed in starting their fraught journey. Each chapter deepens to meet the more detailed needs of midcourse sufferers and beyond. 

“Living” belongs in the hands of all persons affected by PD. It is the indispensable guide to living as best possible with this inscrutable condition.

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PD AVENGERS RIP INTO INEQUALITY OF CARE

I spent an absorbing two hours this week “Zooming” in-and-out on the internet with a dozen international activist/leaders in the struggle against Parkinson’s disease.

Among the countries represented were Canada, Great Britain, Ireland and the USA. Participants were eager to assault inequality in access to quality Parkinson’s care worldwide.

I will know more about them and their stories as our twice-monthly meetings gain momentum. Our leader is the able Richelle Flanagan of Ireland.

Most members seem to be PD sufferers—a mixture of short and long duration. There were old guys like me and working folk in their 40s.

It is incongruous that “journalist me” is telling a sketchy story with limited details. But after all, it’s Parkinson’s, a condition that is wispy–the classic Snowflake Disease. 

Our “equity” committee is part of PD Avengers. This new, global group comprises Parkinson’s advocates who were inspired to take action after reading the remarkable new book “Ending Parkinson’s” by Drs. Bas Bloem, Michael Okun, Ray Dorsey and Todd Sherer.

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.” 

I wrote this in an April newspaper review of the book: It is a compelling read and a “stunning and important work deserving urgent attention from Parkinson’s fighters, their families and health-care policymakers.”

The charge to our equity committee is: 

“We need all people of the world with Parkinson’s to have equitable access to proper medications, treatments, information and support in order to meaningfully add their voices to our 50 million PD Avengers.”’

I will report regularly on the committee’s work in coming months.

For more on PD Avengers, see https://www.pdavengers.com.

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Telemedicine Breakthrough for Parkinson’s Sufferers

For no good reason other than technical incompetence, I failed to to share some important news this week about telemedicine and Parkinson’s disease.

The Trump administration announced Tuesday an executive order that dramatically expands the ability of seniors to access medical care remotely through telemedicine.

In March, the administration announced that Medicare would begin broadly reimbursing providers for virtual services. The program now covers more than 135 medical services through telemedicine, wrote Washington Post health expert Karen Tumulty.

Prior to March, telemedicine was not widely available due to restrictions based on where a patient lived  and the credentials of a healthcare provider to practice in that distance state.

This monumental changed is of special note to  Parkinson’s sufferers like me who confront a shortage of Parkinson’s PT experts in their home state. For example the 23 counties of middle Georgia lack a single, practicing Mobility Disease Specialist (MDS).

Now a patient in Macon GA , for example, can have a telemedicine “office” visit with an MDS in at the University of Florida. There’s an entire new playing field to bring expert services to remote areas.

For no good reason other than technical incompetence, I failed to to share some important news this week about telemedicine and Parkinson’s disease.

The Trump administration announced Tuesday an executive order that dramatically expands the ability of seniors to access medical care remotely through telemedicine.

In March, the administration announced that Medicare would begin broadly reimbursing providers for virtual services. The program now covers more than 135 medical services through telemedicine, wrote Washington Post health expert Karen Tumulty.

Prior to March, telemedicine was not widely available due to restrictions based on where a patient lived  and the credentials of a healthcare provider to practice in that distance state.

This monumental changed is of special note to  Parkinson’s sufferers like me who confront a shortage of Parkinson’s PT experts in their home state. For example the 23 counties of middle Georgia lack a single, practicing Mobility Disease Specialist (MDS).

Now a patient in Macon GA , for example, can have a telemedicine “office” visit with an MDS in at the University of Florida. There’s an entire new playing field to bring expert services to remote areas.

Davis Phinney Foundation, Must Read, Parkinson's Disease, Parkinson's exercise, Parkinson's Patient Care, Support Groups, Uncategorized

Four Steps To Revive PD Communities

Ed Note: The following blog is the work of Melanie Dizon of the Davis Phinney (Parkinson’s) Foundation. It is the first concrete plan I have seen that addresses restoration of social connections in Pandemic-stressed, Parkinson’s communities. Hats off to  Mel and her colleagues for a wonderful, just-in-time plan of action.

 

In the beginning, it was kind of fun, right? Or at least interesting.

You learned how to connect with your family and friends online.

Your Rock Steady Boxing coach, Dance for PD®  teacher, and your Pedaling For Parkinson’s™ instructor came through the internet and right to your living room or home gym for a safe workout.

You may have even tried out a new skill, picked up a long-ago loved hobby, or took up a new sport while you followed “stay-at-home” orders.

You even listened to those who said, “You can live well with Parkinson’s at a distance”, especially your doctors who you may have “seen” and spoken to even more lately because of the magic of telemedicine. (If we can keep and build on one thing from this crisis, can we please make it access to telemedicine for all!)

Fortunately, in the early days of the COVID-19 pandemic, you did continue to live well with Parkinson’s. You made a commitment to it. You promised yourself you would do it. And you vowed that nothing was going to get in your way.

But, nine or 10 weeks ago, you couldn’t know how much you’d miss hugs from your boxing mates, a fist bump from your cycling buddy after you survived a tough climb, or the knowing nod and the tell-tale creasing of the eyes when someone who truly gets you returns a smile. You may have suspected, but you never had to test out how important those physical connections are to living well with Parkinson’s.

Now you know.

And Zoom support group calls, YouTube videos, and online group exercise classes are starting to wear on you. And despite their widespread availability, so much so that you could fill your day with them if you wanted to, they are exactly no substitute for the in-real-life connections you crave.

Over the past couple of weeks, we’ve had more time than ever to check in with our Parkinson’s community and listen to them talk about their experiences and challenges. Without a doubt, the challenges that come from not being able to be in the same room together are at the top of the list.

So, while we know that we aren’t out of the woods yet, and that some of these online solutions will likely be with us for a while, we wanted to share four simple things you can do to feed your need and longing for in-person connections today.

(Note: Please check with your medical and care teams before you try any of these out.)

#1 – Find a walking/running buddy to add to your pod

While enclosed spaces have shown to be breeding grounds for the virus, recreating at a safe distance outdoors is fine for many people. Consider reaching out to a Parkinson’s buddy who enjoys walking or running, and who you know has been abiding by their state and CDC regulations, and schedule a daily or weekly run/walk and talk with them. Wear your masks, keep six feet apart, and have fun.

 

#2 – Have a coffee date in a parking lot

Missing a friend from your support group you haven’t seen in over two months? Invite them to coffee at a nearby school parking lot. Bring your own cup of joe and a mask, park at a safe distance, and either grab a seat on your hoods or bring some chairs so you can chat and catch up.

#3 – Pack a picnic

Invite members of your favorite exercise class to a picnic at a large park. Mark off squares that are six feet apart in all directions and have people set up blankets or mats on each square. Eat, stretch, play a question game, etc.

 

#4 – Play music, sing, meditate, draw, make

Do you have some Parkinson’s friends who play instruments, love to sing, are avid meditators, or just love to make things? Gather in a wide-open outdoor space with your favorite “tools” and see what happens. Sometimes just being in the presence of others you care about, even if you’re not doing the same thing, even if you’re not talking, is all you need to feel connected. Sometimes, it’s simply the shared desire to connect and seeing other people show up for you that’s all you need to start feeling like yourself again.

Not everyone will feel safe getting out in these ways. And as we said before, your care teams should sign off on this as they know your specific situation better than anyone. But, if you do get the all-clear, these are four easy to do but very meaningful ways of connecting in real life, for now.

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.

Uncategorized

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