Davis Phinney Foundation, Must Read, National Parkinson's Foundation, Parkinson Disease Foundation, Parkinson's Disease, Parkinson's Foundation, PDF, Research

The PD-Autoimmune Connection

Shuffling Editor note: I am intrigued by growing evidence that PD is an autoimmune disorder. This review article makes the point clearly. It appeared in Parkinson’s News Today by Magdalena Kegel.

“Parkinson’s disease may in part be driven by autoimmune processes, according to researchers who discovered that certain immune cells react to alpha-synuclein — a protein that accumulates in the brains of Parkinson’s patients.

“The findings, published in the journal Nature, raise the possibility that immunotherapy could be used to slow down disease processes in people with Parkinson’s. An immune reaction to alpha-synuclein could potentially also be used to identify people at risk of developing the disease.

“‘The idea that a malfunctioning immune system contributes to Parkinson’s dates back almost 100 years,” David Sulzer, PhD, a professor of neurobiology at Columbia University Medical Center and one of the study’s lead authors, said in a press release.

“’But until now, no one has been able to connect the dots. Our findings show that two fragments of alpha-synuclein, a protein that accumulates in the brain cells of people with Parkinson’s, can activate the T-cells involved in autoimmune attacks,” he said.

“The study, “T cells from patients with Parkinson’s disease recognize α-synuclein peptides,” suggested that immune T-cells react to neurons in which large amounts of abnormal alpha-synuclein has piled up.

“Together with colleagues at the La Jolla Institute for Allergy and Immunology, the research team took blood samples from 67 patients with Parkinson’s disease and 36 healthy controls of the same age and mixed them with fragments of alpha-synuclein and other neuronal proteins.

“The idea was to observe how immune cells present in the blood would react to the protein parts. While immune cells from healthy people did not react much to the presence of the nerve cell components, T-cells in patients’ blood reacted strongly to alpha-synuclein. This indicated that they had been primed to recognize the protein.

“The response could explain why genetic studies of Parkinson’s disease have repeatedly flagged a genetic region, which is responsible for the immune system’s ability to tell the body’s own structures from foreign ones found on microbes and tumors.

“Sulzer’s lab had shown three years ago that dopamine neurons have proteins on their surfaces that act as flags that aid the immune system in recognizing foreign structures. They suggested in 2014 that T-cells had the potential to attack these neurons in an autoimmune process.

“The new study provided evidence of how this might happen. According to Sulzer, the T-cells might start reacting to neurons when they start accumulating abnormal alpha-synuclein, mistakenly thinking they are a foreign structure.

“In most cases of Parkinson’s, dopamine neurons become filled with structures called Lewy bodies, which are primarily composed of a misfolded form of alpha-synuclein,” Sulzer said.

“Young, healthy cells break down and recycle old or damaged proteins,” he said. “But that recycling process declines with age and with certain diseases, including Parkinson’s. If abnormal alpha-synuclein begins to accumulate, and the immune system hasn’t seen it before, the protein could be mistaken as a pathogen that needs to be attacked.”

“But so far, researchers do not know if the immune response is what triggers Parkinson’s in the first place, or if it drives disease progression once the disease has been triggered by other factors.

“”These findings, however, could provide a much-needed diagnostic test for Parkinson’s disease, and could help us to identify individuals at risk or in the early stages of the disease,” said study co-leader Alessandro Sette, a professor in the Center for Infectious Disease at La Jolla.'”

 

 

Davis Phinney Foundation, National Parkinson's Foundation, Parkinson's Disease, Support Groups

New Front, New Banner for Shuffling Editor

Shuffling Editor is opening a second front (Central Georgia) for my PD patient advocacy work—under a new banner (Davis-Phinney Ambassador).

I came to Tampa 19 years ago to help arrange the marriage of The Tampa Tribune, WFLA-TV and TBO.com in the News Center

I leave to fight back better against my Parkinson’s disease.

However strong my defenses, this unpredictable neurological disease will inevitably progress. The question is how best to slow it and bend its trajectory in the desired direction.

My wife Struby and I have purchased a home in Carlyle Place, a lovely and lively seniors’ community in Macon, Georgia. It is owned by the local hospital and medical complex Navicent.

It’s near stately Wesleyan College and not far from dynamic Mercer University. Higher education is in my blood, first as a student then as a journalism professor after retiring from the Trib in 2006.

PD is not a death sentence, as followers of this blog know. It is possible to “live well” with it, as the Davis Phinney Foundation says. I am doing so now.

Parkies globally are embracing improved exercise habits, diet, mental tools and social networks to punch back at this cruel condition. An increasing number of studies document our improved health and well-being.

“When people describe Parkinson’s disease, they often define it as a disease that is incurable and without treatment to slow its progression,” says Dr. Peter Schmidt, chief research and clinical officer of the Parkinson’s Foundation. “You can change how Parkinson’s affects you, but it takes hard work and dedication.”

The key is taking charge of the disease, Schmidt says, by aggressively seeking the most expert care available and engaging your brain through rigorous exercise and mental conditioning.

Dementia, however, remains a strong possibility at the end of the PD road. If that’s my fate, Struby has helping family in Macon and my brother and his family is 80 miles up the road in Atlanta.

Struby and I leave Tampa with wonderful memories of raising our two sons in Tampa Palms, Rotary service and involvement with Hyde Park United Methodist Church.

We retain our condo in New Smyrna Beach, FL. I intend to continue as Executive Director of the Florida Society of News Editors.

My Ambassador work for Davis-Phinney will include continuing contact with Tampa Bay Parkie activists and new Living Well initiatives in Central Georgia.

My newest community is six Tampa Bay Parkies and their care partners in an unusual support group, the Parkinson’s Disease Action Group (PDAG). I describe it this way in the Mission Statement:

“No accountability organization or system exists for strongly aspirational and persevering Parkies. We have created one, the Parkinson’s Disease Action Group (PDAG). The group comprises six Parkies and their care partners.

 

“Our goal is to help one another out-wit, out-flank and counter-punch this unwelcome tenant in our brains. We will reach out to identify and mentor newly-diagnosed Parkies.

“We will share and learn from one another’s action steps, such as second-and-more opinions, off-label medications, busting through bureaucratic barriers, and workarounds for diminished skills and loss of control.

“We aim to meet monthly to hear, discuss, engage and bolster the health and personal plans of one of our couples. Our conversations are confidential. We will be candid, challenging, confronting, caring, and loving. (Anyone who utters the weasel words “to be completely honest with you” will undertake 50 pushups.}”

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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Davis Phinney Foundation, Parkinson's Disease, Parkinson's exercise, Support Groups, Uncategorized

Essential PD Communities

I owe Tim Hague Sr. an enormous thank you. The Canadian Parkinson’s advocate/educator/motivator helped me rethink my relationship with the various communities in my life.

Hague was a featured speaker at the Davis Phinney Foundation’s Victory Summit last week in Punta Gorda. He captivated the more than 800 Parkies and friends with perseverance stories about winning the first Great Amazing Race Canada with son Tim Jr.

Their reward was $250,000 cash, plus automobiles and free air travel. The perseverance required to win had everything to do with Tim’s PD-related memory and organizing challenges.

To hear Tim tell his story, go to http://www.timsr.ca/watch-tim-speak/

Tim often referred to the communities in his life: family, his hometown Winnipeg, fellow Parkies, his health care team.

He got me to thinking about the communities in my life: my immediate and extended family; PD SELFers; Rock Steady Boxing compatriots; PD support group members; fellow Florida newspaper editors; the golf group I once belonged to; college friends; high school friends; journalists I worked with at three Carolinas newspapers. The list goes on and on.

Each community commands my attention, requires nourishment and provides me support in large and small ways. I count on them to help fuel my perseverance in pushing back at my Parkinson’s condition.

Davis Phinney Foundation is also about communities and individuals in those communities who serve Parkies. The foundation’s primary mission is to salute people who persevere with their PD and serve their communities. Until Friday, I had not understood how Davis Phinney stands apart from other PD organizations in this way.

I salute the foundation and their speakers, such as Tim, for the large contribution they are making to the lives of those of us with Parkinson’s.

 

 

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Parkinson's Disease

Bringing The Wily Old Editor To Heel: Taming Hotspur

I retired from (and was retired from) most aspects of organizational life Saturday.  That took adamant superiors 53 years to accomplish.

I was replaced (fired) as co-facilitator of a dynamite, leadership development program for Parkies named PD SELF. Simultaneously, I resigned my other duties with the Parkinson’s Foundation. The parting was far more amiable than these ruptures tend to be.

All cards on the table face up…..……     

I can be a Hotspur to manage, especially when it comes to things really, really dear to me.

Just ask my former newspaper bosses: Rich Oppel, Mark Ethridge, Mike Pate, Frank McComas, Bill Baker, Clark Hoyt, etc., etc.

I will continue my wonderful association with fine Florida newspaper editors, tend my blog www.shufflingeditor.com, work for my church and contemplate a book. Its tentative title is “Taming Hotspur Subordinates.”

 

Parkinson's Disease, Parkinson's exercise, PDF, Support Groups, Uncategorized

WORKAROUNDS: Counterpunching 14 PD Indignities

pd-walkaround

I treasure the work of the late Dr. Tom Graboys, esteemed Boston cardiologist.

I reread his memoir about PD (“Life in the Balance”), and was riveted by two words: diminishment and control.

Graboys’s major PD undertakings were managing his diminishing capacities and keeping control of his life.

Those are my issues, too.

I give you a sampling of my tactics to counter PD’s relentless drive to diminish, and wrest control, of my life.

  1. Loss of sensation in dominant right hand: go left-handed. (Neuroplasticity at work)
  1. Clumsiness when eating (dropsies): substitute spoons for forks.
  1. Can’t remember where I left keys and like valuables: tether items to a constant in life. In my case, a small leather pouch that’s always at my side. (Boy Bag)
  1. Leaving home without vital documents (wallet, driver’s license): always have them in shoulder bag (Man Purse), which contains Boy Bag in marsupial fashion.
  1. Driving uncertainty: get technology loaded car (GPS, blind spot displays, radar and cameras everywhere); stick to middle lane; U-turns rather than left turns into four-lane roads; care partner drives in unfamiliar areas.
  1. Emotional volatility (emotional incontinence, in a Parkie friend’s unforgettable rendering); think twice (maybe 10 times), before acting on impulse (binge shopping, gambling, etc.).
  1. Thanks to a nOH-like condition, peeing every 30 minutes, urgently: always know (and plan around) location of nearest toilet; wear quick-exit gym pants; stow your pride and employ adult diaper for trips.
  1. Difficulty moving from sitting to standing: use chair with arms rather than deep sofa; employ booster toilet seat.
  1. Life in the slow lane (bradykinesia): add 30 minutes (or more) to a planned task (packing for trip, gym date, doctor visit).
  1. Unstable balance: forget cane or walker; use balance sticks. Sexy and pleasantly eye-catching (“Cross Country skiing in Florida! How neat of you!”)
  1. Forgetting must-do tasks: place visual reminders in front of you. For example, monthly investment report as reminder to call investment advisor.
  1. Loss of multi-tasking ability: KISS principle always. (Keep it simple stupid) Rely on care partner for help.
  1. Leaving stuff in and around car: rigid discipline to ALWAYS check roof, door locks, rear hatch and ground around vehicle.
  1. What-to-wear-today dilemma (due to not remembering your calendar obligations): choose clothes night before. For this once well-dressed guy, this is a new challenge. I need garb that fits the day and is quickly and easily removed, thus assisting me in avoiding the ultimate public embarrassment: pissing in one’s shoes.
National Parkinson's Foundation, Parkinson Disease Foundation, Parkinson's Disease, PDF

I Love P(d)F. Really!

i-love-pdf

I often wonder who’s reading this blog. But I rarely lift a finger to find out.

Walla!

Out of the blue, I am told I have several dozen readers at the New York City office of Parkinson’s Foundation, nee Parkinson Disease Foundation.

My recent scribblings, especially a satirical one about my prize-winning contest post, caused concern there that (1) I had gone bat shit (2) I was mad at PDF, my “employer” in Patient Advocacy and PD SELF or (3) A bit of both.

First, the bat shit issue. My pretensions did carry me away: virtuoso thinking and laugh-a-minute prose.

I apologize to all concerned at PF-New York. (No laughing down there at PF-Miami. I’ve got a zinger coming for you.)

A special apology to John Lehr, new PF CEO, whose last name I misspelled. I imagined him receiving this scurrilous stuff about me from two top aides:

“Remember that passionate and sometimes difficult to manage PAIR (Patient Advocate) in Tampa..? The guy who blogs at www.shufflingeditor.com.

“Turns out the dude actually can write. He won us a $2,500 prize… for contributing to a commercial blog about Moving Day. It was their most liked post of the year.

“Since the money is ours, consider sending him an ‘Atta boy’ note as his consolation prize. He blusters but is a sucker for sentimentality.”

John did send me a gracious message about my work. Thanks, John, in all sincerity.

How about #2, the mad at PF supposition?

I love you Ronnie, Karlin, Melissa, Megan. We Parkies (or PWP in your preferred, clunky usage) bless you for your wonderful website, accurate and informed free publications and advocacy on our behalf. You’re the best!

Now for #3, which is close to right.

I’ve experienced too many dropped balls on fundamental management practices: Unreturned phone calls and messages; lengthy delays on expense checks; vague commitments like…PF exec to me: “How about I call first thing tomorrow morning?” I say I’m available from 5:00 a.m. to 10:30. Call comes at 10:10; lasts until 11:00, cutting out half my exercise class.

As for PF-Miami, you dispatch a staffer to Tampa Bay to prepare for 2017 Moving Day. You don’t think to tell me, the PF PAIR in the region. PD community asks, “Who is this other PF person.” I plead ignorance, appearing to be the veritable turnip truck driver and PF the turnips spilled on the road.

In closing, a gratuitous (perhaps) memo from a former newspaper CEO to our new PF CEO, John Lehr:

Merging organizations is a huge change effort. I’ve done it. Get your elevator speech ready ASAP. Ground it in core values. Speak it relentlessly.

About the time you can’t say it one more time, it starts, yes STARTS, sinking in.

PF, I’m with you for the long haul. Make me proud always.

Remember we Parkies push back at our condition with love, laughter, hope and prayer, to paraphrase my email signer.

I love you guys, every day, always.

But loosen up AND amp up your sense of humor. Please.

Parkinson's Disease, Research, Uncategorized

How my post won, but didn’t, a $2,500 prize

January 12 was a strenuous day. After helping facilitate Module 4 of PD SELF —the groundbreaking personal leadership program of the Parkinson’s Foundation, PF for short—I was wasted and ready for a Sam Adams Pumpkin beer…..or two.

Come 2:00 PM, when I finally sat with my Sam to check email,textito-2500-award what did my tired eyes spy but a message from PF.

Here’s an edited version of that eye-popping email: “I have good news for you —remember when you helped us by writing a post (for a contest)? It turns out PF won the most liked post of the year (yours) award, which means we get the sum of $2,500.”

I asked myself who is the “we” getting the $2,500? Posing that question publicly, however, would be very bad form.

I imagine the whispers at HQ.  “He wants what? To take money for himself that we would use for research to find a cure for PD? Come on man! Get real.”

Brain Lightning……….Write a tongue-in-cheek email to new PF leader John Lear implicitly asking the money question. Have it coming to Lear from two top aides.

Pure genius………. Worthy of my chosen nom-de-plume, “The Wily Old Editor.” So it was—a practical joker’s delight.

“Dear John:

“Remember that passionate and sometimes difficult to manage PAIR (Patient Advocate) in Tampa whom we told you about? The guy who blogs at www.shufflingeditor.com.

“Turns out the dude actually can write. He won us a $2,500 prize…… for  contributing to a commercial blog about Moving Day. It was the most liked post of the year. Since the money is ours, consider sending him an “Atta boy” note as his consolation prize.

‘He blusters but is a sucker for sentimentality.”

The  connoisseurs’ email was sent Jan. 12.

To date no response. Nada.

Swing-and-a-miss, it would seem.

Anyway, here’s the version of the $2,500 column that appeared in the late Tampa Tribune and on this blog in April 2016.


MY PARKINSON’S CRASH COURSE

I wasn’t ready for a crash course in neurology that day two years ago. I was enjoying semi-retirement, assuming my medical writing days were far behind me. But then the doctor said, “You have Parkinson’s disease.”

Ever since, I have been immersed in Parkinson’s 101: what it means to live with a chronic neurological disease.

This month is Parkinson’s Awareness Month. Accordingly, I think even more about the 5,000 people in the U.S. who will also hear those words this month.

What do I wish I had known when I was diagnosed?

  • It’s a snowflake disease.Just like a snowflake, each of us is unique and so is our Parkinson’s. Do not assume your disease will look like someone else’s.
  • Some symptoms are invisible.Because many of us associate Parkinson’s with movement symptoms, we may ignore signs of depression, fatigue, constipation, or sleep problems (especially acting out nightmares). In recent years, the medical field has recognized that such symptoms are part of the disease. If you experience them, tell your doctor so they can be diagnosed and treated for what they really represent.
  • A Parkinson’s specialist can help.Most of us see a general neurologist for our care, without realizing we might benefit from seeing a movement disorder specialist. Those neurologists, who have undergone two years of additional training, can help us to better manage the disease and stay current on research and clinical trials.
  • Staying active is essential. Parkinson’s may affect our movement, but staying active can help in the long run. Research shows that intensive, sustained exercise (such as boxing, hot yoga, interval cycling} can ease symptoms and combat fatigue. And that regular daily activity (going for walks, doing the laundry) can help improve life with Parkinson’s.
  • We can benefit from complementary care. In addition to medications, we can benefit from physical, speech and occupational therapy and the knowledge of nutritionists and psychotherapists. Putting together a care team of these professionals early on can pay off for years to come. But due to the fragmentation of PD care delivery; it takes effort on your part to assemble that team.
  • All support groups not created equal. Support groups have different constituencies (young/elderly onset—newly diagnosed), different energy levels, different ambitions and agendas. Shop widely before you choose.
  • There is a lack of localized information. Patients want close-to-home answers. Where do I locate the physical therapy that doctors often suggest? How do I find a personal trainer who specializes in PD? Who can help me make my home safe from falls? Where do I enroll in recommended tai chi, spinning or boxing classes? In most locales, there is no one place to find answers to those and dozens more local questions. National PD foundations offer effective national advice but can only do so much at the granular, local level.
  • We can live well. Most importantly, I learned it is not only possible to corral the disease but essential to do so. Never, never give in to the disease or lose hope. Cognitive decline and dementia are worrisome (but not inevitable) accomplices to PD neuromuscular difficulties. Find your passions. Mine are advocating for research, raising awareness and sharing validated information.

Also remember that you are not are not alone. There are 1 million of us nationwide. Groups such as the Parkinson’s Disease Foundation and the National Parkinson Foundation are available to support us. Contact them to find information and resources. Together, we cannot only live well with Parkinson’s, one day we can end it.

 

 

Parkinson's Disease, Uncategorized

NOH DRAMA

noh-drama

This post is not about Noh, the traditional form of Japanese theater, but about nOH, a pesky PD parasite that has paid me an unwelcome visit.

Neurological Orthostatic Hypotension disrupts the body’s thermostat, alters the plumbing, unsteadies the legs and saps energy.

It’s like that pilot fish riding along with the shark. A very unwelcome hitchhiker.

It has me so warm I am shirtless on the lanai writing this post. It has virtually killed my Rock Steady boxing sessions. It plays havoc with carbidopa-levodopa, producing paradoxical sleepiness. My mind and spirits, fortunately, are intact.

But it’s taxing my patience.

Backing up a few bars, this critter disrupts the autonomic nervous system. Goodbye normal kidney function, temperature regulation and blood circulation. Hello edema in the ankles and numerous visits to the loo for pees.

My very astute internist didn’t know what I was talking about when I said, “I’ve got nOH.” My equally astute MDS put me on Rx hold–instead of lobbing something nasty at this creature, STAT. Try compression stocking and diet alterations, was the message. We’ll see how those work.

The reputable PD literature says nOH is common in PD and Multiple System Atrophy (please, not that.) It notes that nOH often signals entry into mid-stage PD. I don’t like that one bit, either.

Check out the Parkinson Foundation’s take on nOH: http://www.pdf.org/pdf/fs_orthostatic_hypotension_15.pdf

Recall my earlier post (click here) about burning up on then airplane ride from Houston to Portland for the world Parkinson Congress. That was the tip off to what was brewing inside me.

I will keep writing as I pin this guy down and figure a course of action. Yep. Self-Efficacy to the front. My doctors and I are certainly not interested in another medication, but it may be the wisest way we have to go.

Palliative Care, Parkinson's Disease, Uncategorized

Meet Laura

whos-afraid-of-palliative-care

Who’s afraid of palliative care? My editor, of course. 

Mention palliative care to a Parkie, and most will recoil in real or imagined terror. The first mental association is to hospice and/or end-of-life care.

Here’s what my editor Laura (a tiny woman who in a flaky voice has vowed to kick Parkinson in the face) said about it:

“The word palliative makes me shudder…

“It sort of spells defeat. To me it says: ‘We have given up hope of curing you, so we just want to make you comfortable before your impending demise.’

“In fewer words: ‘Make yourself comfy and die.’

And she adds: “Yet, if I had a nasty, painful, end in sight, I guess I’d want to be palliated to the max”.

The fact is palliative care is undergoing a dramatic and sweeping overhaul. Rather than end-of-life, the focus is now on creating –and following through on– health care plans. Those start at diagnosis and proceed through a number of steps that include patient self-management, mid-stage plan alterations, family support and, finally, death with dignity.

Kirk Hall’s astute reframing of palliative care is well worth reading. This link takes you to his presentation to the World Parkinson Congress.  

Now more about Laura Crawford, my new blog partner, whose commitment to the PD SELF program is astonishing. Laura has all the graphic skills I do not. She also has a fertile and inventive mind about the presentation of ideas. Her illustrations have graced several of recent Shuffling Editor posts.  

I asked Laura to write about herself and her husband, Dan Crawford, a retired telco senior exec. The Crawfords live in New Port Richey, FL.

Now for Laura on Laura:

editor-in-the-sky

Gil Thelen has called me his editor. Those who know him realize that he is pulling my leg. 

But it opens up an opportunity to ask myself, “who am I?”

Fact and public confession is that I have always been a pushover.

Like in a line by T.S. Eliot, I have asked myself at every step: “Do I dare eat a peach? Do I dare disturb the Universe?”

To the concern of my parents and my teachers, since I learned to read my face was always behind a book (I was not a popular kid).

To keep safe behind the pages, I studied literature.

“I’m now licensed to read,” I marveled when I graduated, and went on to spend two decades in PR and media relations. In 2009 I started a communications agency in Mexico, from where I hail (my business partner was a designer, I wrote content). 

Then puff! Out of life’s box of surprises, I was diagnosed with Parkinson’s. 

After exclaiming: “Aha! That’s why I fell asleep in my client’s office!,” I thought I had arrived at my life journey’s last stop. 

But it has opened the best part so far. Parkinson’s forced me out of my old constrictions and into a physically and mentally challenging territory that I am just exploring. It’s sights can be terrifying and yet liberating. 

In early 2014 I left the office in my business partner’s hands, and my very wonderful husband, Dan, brought me to Florida to be treated at the UF Center for Movement Disorders and Neurorestoration.

There, Dr. Michael Okun warned me as he prescribed medication (and I’m very loosely paraphrasing this awesome neurologist):

“Watch out, for you might go gambling, stomp out in a sexual rampage or destroy your finances on a shopping spree.”

But I never thought my obsession would zero in on markers and sketch pads. To my surprise, my brain has turned to graphics. Instead of books I now buy art supplies; words were my life, but now I try to explain everything in form and color. 

So here I am, about to zap Gil with my blazing color pencils if he forgets a comma, ‘cause I’m learning to be assertive (and he’ll zap me back, because he is assertivier).

Anyway, I have embraced PD SELF because the program is great not only against Parkinson’s, but –more importantly— I trust it will help me get rid of that fear of living that shrivels our capacity to enjoy whatever life we have ahead.

PD scares me. But I want to kick him in the face and say, at the end, that my trek was good and that, even if I do it in a shaky/twirly gait, I walked it as myself in full.

A final word about the Congress: gathered were several thousand Parkies using canes, walkers, wheel chairs, walking poles, companion dogs, leg braces, to name but a few PD aids.

What those brave people have in common is one thing.

Hope.

Parkinson's Disease

PD SELF TRAINING LAUNCHED IN TAMPA

Tonight, our ample home will be filled with 50 or more people connected to Parkinson’s disease in the Tampa Bay Area. Sad stories not allowed entry. We will have a grand time plotting a counter offensive to this stealthy and frustrating neurological disorder.

There will be people with Parkinson’s (Parkies is my favorite identifier for the approximately 1,000,000 Parkinson’s sufferers in the U.S.) There will be care partners, medical providers and sponsors of a very powerful learning and action program to harness and bend PD’s course. The program is called PD SELF.

It will engage the 21 recently diagnosed Parkies (fewer than three years) and their care partners for the next nine months. They will graduate with the knowledge and tools to build their personal health care team. Lying at the heart of the program is the vital notion of hope in the face of an incurable neurological disease

The Parkinson’s Disease Foundation explains the background of the program this way:

“Many people are handed a diagnosis with very little guidance on what to do next. But the diagnosis is life changing. Facing life with a chronic progressive disease means facing changes to health, relationships, family life, employment and finances.

“Research tells us that when people are given the resources to cope with these changes, they are empowered to take an active role in managing PD, leading to better health and quality of life.

“PD SELF (Self-Efficacy Learning Forum) is an innovative disease management program that offers this approach. It was developed in 2013 by Diane Cook as part of a clinical trial sponsored by the Colorado Neurological Institute.

“Based on the psychosocial theory of self-efficacy, PD SELF helps people newly diagnosed with PD to create a personalized approach to managing their disease.

Self-efficacy is the confidence a person has in his or her ability to influence an outcome or be successful in achieving a result. Self-efficacy beliefs determine how people think, feel and motivate themselves. It is increasingly used in health care for its effectiveness in helping people to adopt healthier behaviors.”

I am privileged to be a co-facilitator of the Tampa training along with Sherry Harland of the USF Health group. Our site was chosen in competition with other cities and is one of eight around the country undertaking the program this year.

I recently wrote participants about my personal experiences related to this undertaking.

I did it in a rather idiosyncratic manner because I’m a bit idiosyncratic myself, perhaps eccentric.

My email to them described my background in college (Duke) and graduate school (Cornell University Medical College).

I started as a “play-by-the rules, color-inside -the-lines, please-your-parents, overachiever.”

Then came the Big Problem: I had a medical aptitude and a public-affairs aptitude, in about equal doses. (History major and pre med.) So I went to med school, passed my first two years, and then …..drum roll……my whole being said STOP!

Medical book learning was OK. I passed my first two years. But I hated the hands-on stuff; I liked my freelance writing a lot better.

I stopped formal MD traning. I did two more years at Cornell in medical research. I was making time to deal with my family conflicts.

Drilled into me at home had been this nasty: “To be a man is to be a doctor.”

Oh so wrong-headed and dangeous.

A skilled therapist helped me light the dawn. I left the medical bosom and pivoted to news reporting. (I had prepared for that AP job in a very odd and expensive way. I ultimately became probably the only newspaper editor of my generation to train for journalism in med school.)

My lesson learned, applicable to Self Efficacy and PD: Sometimes powerful forces within us prevent us from recognizing a change of course we must make to manage a stunning new problem e.g. a diagnosis of Parkinson’s.

I used teambuilding and self empowerment practices to develop the news organizations I lead. My staffs said that they liked coming to work to produce a paper customers would want to read

In fact, I was fashioning self-efficacy tools when such a concept, if specifically named, might face derision from world-weary and skeptical journalists.

Final thought I gave the Selfies about me: Since my early buttoned-down day, I have become an impassioned advocate for enterprises that bring out the best in people, nurture smart risk-taking and havetheir eye on the future.

That’s you newsroom of the future. (Tampa’s before-its-time News Center)

That’s you urban church of the future, (The Portico, our downtown meeting place.)

That’s you Parkies who create new support, empowerment and accountability forums.

What made me a creative editor, in turn, made me an effective college teacher. The tools for both used the collaborative approaches of PD SELF.

My lived beliefs and values– sharpened by my PD experiences– are these: Face the truth. Call it by its right name. Speak truth to power and live authentically. Nuke passive aggression. Embrace hope. Check your fears at the door. Make God’s Love Real. Every day, live in the “Now” and have laughter ring in your voice.
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