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Webcast worth the watch

One of the nice things that happened for me in the past year was creation of a digital network of my fellow med students at Cornell in the early 1960s.

More than a few of those doctors went to Vietnam and bore witness to the devastation caused by the widespread use of the infamous herbicide Agent Orange.

My classmate Gus Kappler, a practicing general surgeon in Amsterdam, N.Y.,  wrote us recently in the third person about his experiences during the war and beyond.

“Dr. Gus Kappler served as a trauma surgeon at the 85th Evacuation Hospital during the Vietnam War. He not only witnessed war’s devastation on mind, body, and soul but also has observed, for over fifty years, the continuing tragedy of Agent Orange exposure on veterans, children, and grandchildren.

“The Veterans Administration recognizes that the Dioxin in the 2,4,5,T portion of Agent Orange causes Parkinson’s Disease. Two physicians he served with in Vietnam have died from the disease.”

I write this post on the eve of Tuesday’s webcast with the four doctors who wrote the book, Ending Parkinson’s Disease. It’s from 12:00 PM-1:00 PM. Find it at https://www.facebook.com/endingparkinsons.

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The Crucial Importance of Joy

Two of my favorite people “bumped” into one another recently.

One is Benzi Klugar. The other is Rich Harwood. Both use the word “joy” in ways that connect powerfully with my life and work. 

Dr. Kluger is a Parkinson’s expert in Rochester (NY) whom I have known since his days in Denver. He is acclaimed for re-envisioning the role of Palliative Care in Parkinson’s treatment.

Kluger introduces “joy” as an important goal in the evolution of Parkinson’s care. Writing in the JAMA Neurology Journal, he says:

“As medicine strives to provide person-centered care, it is essential that clinicians support the subjective well-being of people living with serious illness. Toward this end, addressing the subjective suffering of an individual is now recognized as complementary to medicine’s goals of treating disease. Joy, on the other hand, has generally fallen outside the purview of medicine, despite its central role in subjective well-being.”

Joy triggered my memory of Rich Harwood writing about my career in 2006. Rich is founder and president of the remarkably effective, civic-action group, The Harwood Institute.

Rich quoted from a note that I sent professional colleague and co-workers when I retired from leadership of The Tampa Tribune. 

“Thelen used the word ‘joy’ to describe his work, Harwood wrote. ‘There must be joy in making the paper if customers are going to find joy in reading it.’ He then called his colleagues joy makers.”

“Thelen is 67 years old,’ Rich said. “I don’t know very many people – of any age – who think of their work as making joy. Indeed, think about the words we usually ascribe to the topsy-turvy world of the news media; two that come immediately to mind are sensationalism and hype.

“These are the polite ones! But what if more news professionals were like Thelen? What if they thought of their profession in terms of their affection for the communities they serve?”

The warmth and understanding of Rich’s words remain with me 15 years later.

Thank you, my dear and good friend.

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Metaphors Fight Parkinson’s

Parkinson’s is an insane condition. No two cases are alike—each unique like snowflakes. Noted movement disorders specialist Dr. David Riley calls it a ginormous salad bar of 100 different non-motor signs and symptoms— to mix and match.

Since my Parkinson’s diagnosis in 2014, I have relied on metaphors to make sense of the mind-bending PD world now embedded in my consciousness. In turn, metaphors guide my journey through the mystifying maze. Here are some lessons that I have learned along the way.

For more, read my guest post on Dr. Michael Okun’s “Parkinson’s Secrets” blog. http://parkinsonsecrets.com/blog/2021/2/28/metaphors

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Covid Restrictions Hasten Cognitive Decline

The Sunday New York Times has a compelling story about how Covid restrictions appear to be hastening the decline of people with Mild Cognitive Impairment. Eminent Parkinson’s expert Dr. Michael Okun, head of the Fixel Institute at the University of Florida, calls the featured story one of “huge” importance.

The story is titled: “We Are Going to Keep You Safe, Even if It Kills Your Spirit.”
https://www.nytimes.com/2021/02/19/opinion/covid-dementia.html?referringSource=articleShare

It documents how Covid distancing requirements have accelerated the decline of patients with signs and symptoms of dementia. That includes cases of Mild Cognitive Impairment, which is commonplace in advancing Parkinson’s and Alzheimer’s.

Writes Katie Englehart, author of the article: “Around the country, geriatricians describe an acceleration of decline — one that they say has not yet been captured and construed by academic literature, but that they see play out in the bodies and minds of their patients. People with dementia are losing things faster than they should: weight, words, functional abilities, their remaining sense of self.”

Anecdotally, my experience with Parkie friends in Macon (Ga) and Tampa supports the story’s thrust. Most of us say our PD symptoms– most definitely including cognition– have worsened in the past year since Covid.

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MOPD Website is LIVE!

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.

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My Learnings From Tumultuous 2020

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.

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Time Has Flatlined

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 4th 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.

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My Swallowing Misadventures

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

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How a Multimedia “King” Ignored Podcasting

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

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It’s the Stress, Stupid

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.