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A person diagnosed with Parkinson’s faces an information jungle or information desert, or both.

The jungle is the overgrowth of often contradictory advice online. The desert is the absence of specific information on local medical and allied healthcare providers.

That list could contain generalist doctors, Parkinson’s specialists, urologists, physical therapists, occupational therapists, speech therapists, to name a few.

TheMe Over PD Foundation is live with a first-of-its-kind website for Parkinson’s sufferers. The website is found at Me Over PD (www.MeOverPD.org).

The first go-live is for the Parkinson’s community in Macon, GA, where the Me Over PD Foundation (MOPD) is based.

The MOPD Foundation is dedicated to assisting Parkinson’s sufferers live well with their condition. That requires patient education, a personal health plan, and a place—bricks and mortar or virtual—to assist a person fulfill their plan.

The website was four years in the making and involved dozens of students and faculty at the University of South Florida in Tampa and Middle Georgia State University in Macon.

The project grew from a blue-sky conversation with a fellow faculty member at the University of South Florida in Tampa.

The colleague, Coby O’Brien, is Master Advertising Instructor in the Zimmerman School of Advertising and Mass Communications. I was the Clendinen Professor of Critical Writing in the school.

We learned on that blue-skying day we shared another very strong tie: Parkinson’s. I was diagnosed with the debilitating, fast growing neurological condition in 2014. Coby’s father has had it for years longer.

We hatched the idea of using Coby’s upcoming Senior Advertising Class to address the information void that faced most newly diagnosed Parkies. 

The students’ hefty assignment was to develop an educational campaign to supply missing local information and resources necessary to treat PD adequately.

Coby and I guided them to work and learn together as a real-world ad agency does for clients. They nailed the assignment.

Their solution was a new type of website that would guide Parkinson’s people from start to finish of their journey. On presentation day, Coby and I were short of sufficient superlatives to describe their accomplishment—as a team.

Meanwhile, my wife Struby and I moved in late 2017 from Tampa to a Continuing Care Community (Carlyle Place) in Macon, her hometown. 

Enter Middle Georgia State University, an ambitious young university. Dr. Scott Spangler, an IT and computing professor, volunteered his students’ help.

Spangler saw MOPD as a teaching opportunity and perfect for his class’s semester-long Senior Capstone Project.

Our website offers authoritative general information about PD. And it has—most crucially—the capacity to host a curated list of local resources tailored for the communities that chose to adopt our website in their work.

 

The site has guidance for creating a personal health plan. It assists users in assembling the care team to fulfill the plan. The site helps sufferers and care partners determine their approach to medical treatment, exercise, socialization, diet and life planning among other things.

Our goal is to aid Parkinson’s sufferers gain a springboard to action no matter where they live. MOPD, a 501(c)(3) foundation, envisions the website supporting the “Prescription for Action” steps called for in the clarion book “Ending Parkinson’s Disease.” 

The MOPD website arrives as Covid-19 restrictions have made personal contact extremely difficult within Parkinson’s communities. It’s an online tool to recapture some of the vital camaraderie lost by the shutdown of in-person activities such as support groups, education programs and exercise classes.

The website offers links to major national PD organizations and clinical trials. Local resources are searchable by type (community, therapy, medical).

The site gives local Parkinson’s organizations a place to post their activities without having to build their own website. There is no charge for use of the MOPD framework.

A local organization that uses the MOPD framework will need to develop and provide its own curated list of local resources and keep those lists complete and up to date.

My friend Rich Harwood asked his network to share their essential learnings from tumultuous 2020. Rich is Founder and President of The Harwood Institute for Public Innovation. What I wrote him follows.

1. I found managing 2020’s twists and turns was similar to what I have had to do since 2014 with my devilish Parkinson’s disease.  It is essential to be both purposeful and improvisational. Purposeful means waking each day knowing I have –and must exercise– a steadfast mission to serve others afflicted with Parkinson’s. That’s my primary way of “Making God’s Love Real,” the watchword of my Tampa church home, Hyde Park Methodist.

To meet that strategic challenge, I must endlessly find new tactical tools. Put plainly, I am making stuff up on the fly to keep our PD community informed and engaged–despite covid-19 socialization restrictions. Add to that the limitations of Zoom and other tech substitutes for in-person interactions.

2. I have reinforced my commitment to “being there” for people and being transparent in my motives and intent. Most organizations we encounter daily   act on internal imperatives, not the needs of their clients, customers and patients. It is vital to challenge inwardness with unrelenting outward focus. My intent is to make “good trouble” for the deprived and voiceless.

3. To my frequent discomfort, I have learned that 24/7 domestic togetherness shines penetrating light on even the strongest marriages. Discomforting rubs must be surfaced and faced, not kicked down the road. Three virtues are essential for this crucial, unending journey.  Acceptance and restraint. Patience with unchangeable mental and emotional mindsets. God-given forgiveness.

The Washington Post has a new feature: “What Day Is It?”

The Post said it is “to help you redefine and regain control of your week…March feels like yesterday, doesn’t it? It pains us, dear reader, to tell you that March was more than six months ago.”

I read those words while thinking about another related, time metaphor. Time had flatlined for me in 2020.

My usual calendar anchors had evaporated. Easter customarily marked the start of planning for our annual Thelen family gathering at New Smyrna Beach, FL. This year Beach Week didn’t happen. Covid-19 nixed it.

July 4^th this year didn’t foreshadow special Labor Day doings, which used to slide into planning for Thanksgiving and Christmas get togethers. Not this year. 

Leisure travel vanished. Covid-19 gave us quarantines, social distancing and masks. Our feet were nailed to the ground.

Living with Parkinson’s makes time uncertainty an even harder problem than it is  for “civilians.“ We Parkies need hand holes to anchor our lives. 

We fight to retain memories and mental habits (handholds) that Parkinson’s is determined to erase. Flattened time only adds stress, which is Ol’ Doc Parkinson’s sidekick.

The old normal of our lives is gone. The new challenge is finding behavioral norms and purpose that keep us engaged in service to others. “Making God’s Love Real, “ as my Methodist church of old put it.

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

I’ve developed a swallowing problem over the past year. It’s a big deal.

I trace some of my 40-pound weight loss to diminished appetite tied to how slowly I now eat. Increased drooling has not been fun either.

Worst case, swallowing disability can result in aspiration pneumonia, one of the two leading causes of death for Parkinson’s sufferers. (The other is falls secondary to balance and equilibrium deficits.)

I have added an ace speech therapist to my health care team. Her grocery list of mouth exercises has significantly improved my symptoms

Dr. Michael Okun has a blog post this week that explores in exquisite detail the spectrum of swallowing problems.

Find it at http://parkinsonsecrets.com/blog/2020/9/26/7qedam0quxrto7qrafbg4i2d70g51x

Back at the turn of the century, I was a small-bore “King” of media convergence.  Or maybe I was only a Duke. (Go Blue Devils!)

Our big convergence deal in Tampa was building the News Center in 2000. It housed WFLA-TV, TBO.com and TheTampa Tribune newsroom. 

Journalists migrated to our “Mecca” to observe how once-cutthroat competitors “made nice.”  Reporters delivered news on the “first available platform,” no matter the medium that signed their paycheck.  Radical idea then. Common practice today.

I retired as President and Publisher of the Tribune in 2006. A new convergence model was sprouting then. Its name: podcasting.

I entered the academic religious order for the next decade, never engaging and using this new media platform. I was unaware of the reach and power of podcasting. ( A podcast is an episodic series of spoken word and digital files that a user downloads to a personal device for later listening.)

Larry Gifford, co-founder of PD Avengers, introduced me to the podcast experience last month. PD Avengers is a global alliance of people with Parkinson’s standing together to demand change in how the condition is seen and treated. I am an Avenger in training. (See http://www.PDAvengers.com)

Larry is national director of Talk Radio for Corus Entertainment in Canada. He hosts the podcast “When Life Gives You Parkinson’s.”

After a Zoom meeting where I mentioned the topic, he invited me to discuss “When You Know It’s Time To Fire Your Neurologist.” I’ve done so twice.

It was a terrific experience.  “I see now that they are very effective, new journalism form,” I wrote Larry about podcasts. “In essence you and Rebecca (his wife and co-host) created a warm and harmonious space where a number of voices were connected into a very well told story.”

In researching this post, I encountered Andrea Bernstein, an accomplished and versatile investigative reporter.

“I adore audio,” she said. “The pauses, the breaths, the catches, the little inflections that can say so much more than hundreds of words on a page. Finding a perfect piece of tape is like summiting a mountain, the whole world just opens up before you.”

“When You Know It’s Time To Fire Your Neurologist.”

You can listen and download from here: https://t.co/HDIHuT0u2m

Will I never get it?
Suddenly my Parkinson’s symptoms spike through the roof. I get pain in weird places. My meds wear off super fast.
I wander around in a fog.  I can’t mentally connect to changed circumstances. 
Have I suddenly had a falling-off the-cliff moment with my PD progression?  What did I do wrong?
DUH!
It’s the news thing again. It’s Trump madness, this time his Covid-19 diagnosis and hospitalization.

Stress am I, which is Ol’ Doc Parkinson’s helpmate in bringing out my worst PD symptoms.How can I forget my recent blog on the connection, ‘The Clarifying Power of What Next.” (Sept. 14)

I care deeply about what’s happening to my country. It’s tearing itself apart. The 2020 presidential campaign is a scene from “One Flew Over The Cuckoo’s Nest.”

I have to bloody remember that stress fries my autonomic nervous system.  I need to go to my “Happy Place” where a Perdomo 20th Anniversary awaits lighting and a glass of Merlot is being poured.

Dr. Michael Okun has a terrific new post on how Parkinson’s sufferers can identify, then overcome, barriers to exercise. This is well worth your time and attention.
I am a rabid exerciser. Still, my yes were opened by much in this post. 

http://parkinsonsecrets.com/blog/2020/9/23/kl4edscjq0j7gcweup84w55g8rp9li

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.

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.