Bourdain Suicide After Parkinson’s Diagnosis

Today (June 11) I speak to the Rotary Club of Macon about Parkinson’s.

My planned remarks contained nothing about the suicide June 8 of Anthony Bourdain, the famed food writer and TV personality.  They now do.

Media reports link Bourdain’s death to his recent Parkinson’s. I cannot independently verify the connection, but the wealth of detail lends credence to the story.


Bourdain’s death is eerily similar to the circumstances of Robin Williams’ suicide. It occurred after his diagnosis with an especially lethal type of Parkinson’s: Lewy body disease.

(See Corey King’s fine post about Williams. King is my Davis Phinney Ambassador colleague.)


The connection between Bourdain and my message to Rotary members is this: there is too often a dangerous lack of information given to Parkinson’s patients at diagnosis and afterwards.

I write about this toxic disconnect in “Counterpunch: Duking It Out With Parkinson’s, the forthcoming book co-authored with by my wife.

Here’s what I recount about the day of my diagnosis in 2014:

“The PA sketched instructions on paper for phasing in the medication (Sinemet) over a month. See the doctor in three months, she said, making the appointment.

“That was it.

“No counseling about managing the condition. No mention of what to tell, or not tell loved ones, friends or employer. No pamphlets explaining Parkinson’s. No advice about trustworthy information, online and off. No mention of support groups to join.


“I was figuratively shown the door, alone in the parking lot with the malady that would shape the rest of my days. The parking lot was for a university medical center designated a National Center of Excellence for PD care.”

The information void for Parkinson’s sufferers is patient neglect at the highest order. It must end. Now.











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Terrific Story about Golf and Parkinson’s

A very special Parkinson’s and golf story came across my desk this week. It’s special because it is all about the magic power of neuroplasticity and neurorestoration.

Struby and I are completing final touches on our book “Counterpunch: Duking It Out With Parkinson’s.”

I wrote the glossary this week. Here are three relevant definitions included in it.


 Neurogenesis is the process by which neurons are produced by neural stem cells. It is most active during embryonic development but occurs throughout life.


 Neuroplasticity is the ability of the brain to change throughout life. Brain activity of a function, for example mechanics of a golf swing, can be transferred to a different brain location after injury.


Restoration of a brain function through neurogenesis.”

I used golf in the neuroplasticity entry for a personal reason. After losing my ability to swing a golf club in 2016 due to a severe Parkinson’s attack on my autonomic nervous system, I regained it this year. I modified my swing to compensate for PD’s muscle stiffness.

Here’s the terrific story by Gary Van Sickle in Morning Read:




Fighting Parkinson’s For Control

Parkinson’s wants control of us.

That’s a great lesson I first encountered reading Thomas Graboys’ magnificent autobiography of his inner life with Parkinson’s and Lewy Body Dementia,  “Life in the Balance.”

Bowels, bladder, equilibrium, balance,sleep,mood, memory, energy, intimacy.

Parkinson’s demands control of all we are and value.

Not just the Parkinson’s person is in this struggle. So are loved ones in countless ways.

The care partner might ask:

How do I engage this person who is different than before?

What about heir new mobility limitations? Their inwardness or outwardness? Their emotional disengagement? Their discomfort with showing their symptoms in public?

Their masked face? Their difficulty finding words to describe what’s happening to them? Their frustration with new limitations?

Their slowness? Their indecision? Their memory lapses? Their mood swings.? Their unpredictability in multiple ways.?

The Parkinson’s person is similarly conflicted:

How do I describe the life taken from me?

How do I adjust to a condition weakening my well-being?

How do I find common ground with my intimates who want the old me back?

What’s the new contract with them and can I meet it?

How do I live with daily changes in my condition–good days/bad days? What about on/off times with my meds?

Fighting for control, everyday and always.

Our greatest challenge.



The Improv Life With Parkinson’s

Scene: Late Saturday AM at the Macon home of me — the Shuffling Editor (license plate SHFL ED) — and spouse Struby, The Great Copy Editor.

Shuffle and Great are finishing a two-hour conversation with three Parkie couples about the struggle for control of your lifeamidst Parkinson’s many curve balls.

The front door bursts open.

It’s Chuck and Shirley. “Are we late for the Pot Luck lunch?” Chuck asks, waving two bags of fried chicken.

Great and Shuffle are stunned.

Chuck and Shirley are members of the earlier PD Study/Action Group.

Well, no, they are not late for the Potluck scheduled for the followingSaturday.

“I was certain it was today,“ Chuck says.

Shirley rolls her eyes.

It’s a Parkinson’s thing, this mental confusion about dates and times.

(Another member of the first Study/Action Group appeared a day late for a breakfast meeting of Shuffle’s unrelated First Amendment Tribe (FAT) group.)


Twelve pieces of chicken and two beers later for the four of us, Chuck says they will return the following Saturday for the potluck

Just another day with Parkinson’s, the Great Disrupter.

Too funny!


The Gut and Parkinson’s

An unusual type of colitis struck me in 2006. It mysteriously disappeared in 2014, the year I was diagnosed with Parkinson’s disease.

What was the connection between my Lymphocytic Colitis and PD? My physicians were mystified.

Recent research is identifying the gastrointestinal tract, as a probable starting place for PD. It’s quite an unfolding story.

Players include benign bacteria, inflammatory reaction, misfolded protein, and travel of a prion-like element from the gut to the brain along the vagus nerve.

This quite readable Scientific American article tells it well:




Another Kind Of Perseverance

Perseverance centers a life of meaning. People with Parkinson’s know that well.

What follows is perseverance in a different realm, a gifted young athlete’s hard-fought journey to the top of his sport, lacrosse. The athlete is our youngest son, Jonathan (“JT”) Thelen, #8.

It rained sporadically Saturday night at Mustang Stadium, home of the Stevenson University lacrosse program. The place: Owings Mills, MD, a northwest exurb of Baltimore.

JT likes rain with his lacrosse, the more and the better. He’s been that way since he started playing at age 10.

It’s Stevenson against Widener (Chester, PA) for the MAC Commonwealth Championship. Winner receives an automatic bid to the NCAA D-III championship playoffs.

Also at stake is #8 JT– MAC  Offensive Player of the Year—rematched against Widener’s #41, John Ferguson– MAC DefensivePlayer of the Year.

This game is for revenge — Stevenson’s for the physical pummeling it took from Widener a week earlier. Stevenson overcame a four-goal deficit to edge Widener, 11-10 in the final regular season game for each.

Widener is by reputation aggressive, very aggressive. They were in the week-earlier game. The refs stood by as Widener’s defense repeatedly pole-axed Stevenson attackers, hitting them in the helmet and driving them to the turf.

Nonetheless,  JT had 4 goals, 1 assist.

This night, Stevenson’s blew Widener’s doors off. At half, Stevenson 6, Widener 0.

JT, #8, had 3 goals after 30 minutes. The game ended 12-6 with #8 accounting for 5 goals and 1assist.

The outplayed Widener #41 ended his game ignominiously. He was ejected for unsportsman-like conduct in the final period.

JT finished with 95 points for the season to date, a conference high and  second most ever by a player in the storied Stevenson lacrosse program.

JT is gifted at lacrosse. Academics come hard.

He struggles with ADHD.

He has worked very hard at lacrosse to become the player he is today: commanding on field; graceful and spontaneously creative; uncanny in his full field of vision; a great passer who assists teammates make goals.

Stevenson coach Paul Cantabene refers to JT “doing his thing,” sometimes with a note of criticism for his risk-taking style of play.

JT’s “thing” has propelled Stevenson to a 12-6 record, after starting 0-5 against a killer’s row of opponents and season loss of  two-thirds of the first defensive line.

Jonathan (JT) Thelen preservers with a huge heart and complete commitment to his teammates.

His mother and I could not be any prouder of his achievements than we are today.






























Things I Wish I Had Heard At Diagnosis

My Davis Phinney colleague Rich Wildau shared a short and lovely piece of writing about Parkinson’s. Its title is “A Letter to My Clients: Things I wish I could have told you on the day you were diagnosed with Parkinson’s.”

The piece goes to the heart of what it means to “Live Well With Parkinson’s, the Davis Phinney charge.

Here are three points I particularly liked. The entire post is at  http://www.invigoratept.com/blog//a-letter-to-my-clients?awt_l=DeIAr&awt_m=nDT1wGzMkwN.Li

“Your Future has Not been decided for you. There will be naysayers and fear mongers, but a diagnosis of Parkinson’s is just that – a diagnosis. It’s a label for a collection of symptoms, not your prognosis or a crystal-ball prediction of what your future holds. It’s okay to believe you’ll get better, not worse, and that you’ll never need a wheelchair. This isn’t denial if this belief is paired with deliberate action on your part to improve your health and maximize your vitality. Your future is in your hands, no one else’s, and your attitude is everything.

“Start Exercising. Now. The evidence is strong – regular exercise is neuroprotective (meaning it protects your brain) and promotes neurogenesis (meaning it helps develop new connections in your brain). The buzzword is “neuroplasticity” which means your brain is always molding and changing based on what you ask it to do. So, challenge it (mentally and physically) to change it for the better. The absorption and utilization of dopamine, the neurotransmitter that is lacking in Parkinson’s, is significantly boosted with a challenging and frequent exercise regime.The bottom line: You shouldn’t miss a day of exercise in the same way you wouldn’t miss a day of taking your medication. Yes, it’s that important! If you’re not an exerciser.. well, you are now!

“Take Action Now, don’t wait. You may feel you’re “not that bad”. Your symptoms are minimal and you feel you can pretend they don’t exist and for a while, yes, you’ll be able to go on as if nothing’s ever happened. Your urge to “stay normal” in the eyes of others for as long as possible is strong– I get it. However, when it comes to Parkinson’s there is no waiting, whether you have symptoms or not. Taking immediate action to uplevel your exercise program, manage your stress, regulate your sleep cycle, and overhaul your nutrition is crucial to preserving your precious brain and is the only option. Medication will help your symptoms and DBS may reduce your tremors, but these are simply masking the dysfunctions in your system, not fixing them.Very similar to the way money compounds in your bank account – not changing your habits now will only compound your problems down the line. Starting today, put yourself first and make your health andfuture your top priority.”


“Counter Punch” Preface

You are stunned to hear you have Parkinson’s disease.


You are a certified Person With Parkinson’s (PWP), or a Parkie, as I prefer to be called.


Your options are just two: 1. Take to the couch (or recliner) and let the disease grind you down one bodily system at a time. 2. Get vertical, get moving and engage the Beast at every step of your journey. Counter punch the bastard. Dizzy him with metaphorical jabs, hooks and upper cuts. Take back a portion of the ground he has gained from you.


That’s it. A stark, binary decision. Fight or melt away.


This Call To Action is about my choice of Option 2.


I will try to answer the two questions I get most often.


“I’ve just been diagnosed with Parkinson’s. What will happen to me?”


“What’s it like having Parkinson’s?”


I will offer no easy answer to either. But I will address both.


PD is an ultimately unknowable condition.  Each case is unique to the person. Even the numbers are approximations. One million cases in the U.S. Seven million worldwide. Fifty thousand new cases a year in the U.S. Second most common neurological disorder after Alzheimer’s.


One million cases in a nation of over 320 million persons.  A mere drop in the bucket, right?  High public awareness of PD suggests otherwise.


I speak often to civic organizations about PD. I invariably ask: “How many of you know someone with PD?” Routinely, a third or more of the group raises their hand.


What about the question “What will a PD diagnosis mean in my life?” The best answer I can give is “everything.”


My stab on the what’s-it-like question is this: Every day with PD is different. Funky, sometimes. Apathetic, others. Disorganized, frequently. Sometimes, even the old “normal”.


Rarely is there a reason to explain the difference, except one: STRESS. The more stress, the greater the intensity and number of symptoms. Less stress, fewer and milder symptoms.


I will share my experience since diagnosis in 2014 at age 75. I was a semi-retired journalist, executive director of the Florida Society of News Editors and part-time college professor in Tampa, FL.


I retired in 2006 as president and publisher of the then-thriving Tampa Tribune (now shuttered). Previously I was executive editor of The State newspaper in Columbia (SC) and editor of The Sun News (Myrtle Beach (SC). Before that I was a senior editor of The Charlotte Observer and a Washington correspondent for 12 years. At diagnosis I was Clendinen Professor of critical writing at the School of Mass Communications, University of South Florida.


My university was Duke (history major and pre-med). Intending to be a physician, I successfully completed two years of classes at Cornell University Medical College. I decided instead to become a health and medicine reporter, which became my specialty as a Washington correspondent. (Associated Press, Consumer Reports, Chicago Daily News)


It was impossible to imagine then how my medical training and writing would sharpen my sparring with PD 50 years later.


I have chronicled my PD journey on my blog www.shufflingeditor.com. The shuffling refers to my foot-dragging that kicks up scatter rugs.


This modest undertaking makes no effort to be encyclopedic or definitive on Parkinson’s. It is one man’s (and his wife’s) story of counter punching the many assaults and disabilities PD has dealt me. I will recount my strategies and workarounds to stay upright, moving and productive.


My fundamental message is take aggressive action, shape your future, don’t be a victim. Persevere.


I owe a huge debt of gratitude to Diane Cook, the Parkie genius who developed an enormously powerful training program that has guided me in my journey. It equips Parkies with the knowledge and mental tools to ease the symptoms of this progressive, incurable but treatable condition.


My second debt of gratitude is to the founders and practitioners of Rock Steady Boxing. It’s a PD therapeutic training program that goes well beyond punching a heavy bag. My book title comes from Rock Steady experience.


The words I live by are Love, Laugh, Hope, Pray, Persevere.


The tone of this book is meant to be informal and sometimes cheeky- – like the newsroom cultures I so love. I expect you will sometimes find me venturing too far out the verbal diving board. Forgive me.


I hope the experience I recount will give fellow Parkies a few useful tools to counterpunch PD, a wicked disease indeed.




Gil Thelen

Xxxx 2018

Macon, GA






“Counter Punch” Chapter 1

Chapter 1:

“It Won’t Kill You”


The physician assistant studied my walk.  My right arm swing was out of sync with my left. Right was lower.

Case closed.

“It appears to be Parkinson’s,” she said, almost cheerfully.  “The good news is it’s treatable. And it won’t kill you. Something else will.

“The bad news is Parkinson’s is progressive and incurable.”

I heard those carefully chosen words on an early spring day in 2014. The exact date I don’t remember.

Not remembering diagnosis day is quite unusual among Parkies. For most it’s a red-letter day, the day their life changed forever.


I was more relieved than shocked at the news. Finally, I had an answer for the bedeviling symptoms that had been mounting since 2006: depression, extreme fatigue, leathery fingers, violent nightmares acted out at my wife’s expense.

In one vivid dream, I was a soldier in World War I. Germans were attacking my position. I hurled myself down an embankment, arms flailing. One arm, in real time, struck my wife.

At other times dreams threw me out of bed, knocking over and breaking the bedside table and lamp and cutting my forehead on the table edge. (The cut was quite close to my eye, and blood still stains the carpet.)

Tell your internist about the dreams and their increasing frequency, my wife Struby  said. “I am worried.”

Just old man stuff, I thought to myself. No way to stop them. Waste of time to bother a busy doctor with that.

Wrong call.

Had I messaged my internist, Elizabeth Warner, about the dreams, the PD diagnosis could have come months earlier and treatment started sooner. (The action-filled dreams, REM Sleep Disorder, are a hallmark of PD.)

In retrospect, I saw that some physical deterioration I had experienced was due to Lewy Body damage, not normal aging.

I had difficulty throwing a baseball. I was progressively losing distance on the golf course.

A 240-yard drive in 2010 limped 180 yards in 2015. I hung up my golf shoes and clubs that year after playing passionately for 55 years. I could no longer swing a club and maintain balance. (I returned to the game in late 2017 after intense training and exercise restored much of my lost balance and equilibrium.)

There were behavioral changes. I had uncharacteristically withdrawn from faculty friends at USF in the months before diagnosis. Depression was squashing my normal exuberance.

My classroom energy was lower. I love coaching and teaching. But some days I shortened class to fit what energy I had.

Rewinding to the time before diagnosis, my internist and her colleagues continued to search for answers to my case.

Vitamin B-12 deficiency perhaps? Nope. Monthly B-12 injections didn’t do much.

The odd leathery feeling in my hands sent me to the neurologists, referred by the internists. B-12 deficiency can cause peripheral nerve damage. The peripheral test for damage was negative.

But the PA’s test of my balance, muscle tone and walk revealed the true malefactor. It was PD killing off dopamine-producing neurons in my brain.

Oddly enough, symptoms often don’t appear until 50% to 70% of the dopamine neurons are dead.

Yet the PA’s diagnosis was tentative. No blood or other routine test can identify PD beyond any doubt.

Proof of diagnosis is considered to be significant symptom improvement  after adjusting to the drug carbidopa-levodopa (Sinemet). The drug is commonly called the “Gold Standard” for treating PD.

The PA sketched instructions on paper for phasing in the medication over a month. See the doctor in three months, she said, making the appointment.

That was it.

No counseling about managing the condition. No mention of what to tell, or not tell loved ones, friends or employer. No pamphlets explaining Parkinson’s. No advice about trustworthy information, online and off. No mention of support groups to join.

I was figuratively shown the door, alone in the parking lot with the malady that would shape the rest of my days. The parking lot was for a university medical center designated a National Center of Excellence for PD care.

Compared to most newly diagnosed Parkies, I was fortunate. I had medical training. I was a reporter trained to seek validated, reliable information. I had been an editor-in-chief of large newsrooms, accustomed to aggressively making and carrying out complicated plans.

What if I had none of those assets? I shudder at the thought.



Lesson Learned:

No system of care exists if you have Parkinson’s, unless your treatment is from an extremely small handful of highly specialized and patient-centered institutions.

It’s all on you. You live by your ingenuity and perseverance.

Goodluck. Indeed.


“Counter Punch” Chapter 2


Chapter 2:

Reporting My Malady


Malady identified. Parkinson’s. Time to report the medical story of my life.


I sought accurate, verified and crystal clear information: standard ingredients of good journalism.


I knew the playing field.


Google and the internet were first. The information there was voluminous, disjointed and often of questionable origin and intent, commercial or otherwise.


Next the websites of the four (soon to be three) major foundations focused on PD. They are the Davis Phinney Foundation, Michael J. Fox Foundation, National Parkinson’s Foundation and Parkinson Disease Foundation.


The information was straightforward and mostly well organized. My research found the sites trustworthy, accurate and reliable.


Each overlaps with the others but is somewhat specialized. Fox focuses on new drug research. Davis Phinney has exercise as its niche. NPF and PD, now merged as the Parkinson Foundation, are known for their patient care and patient advocacy work.


My friend Kirk Hall has assembled a comprehensive list of information available on the four sites, plus several more. It appears on his website http://www.shakypawsgrampa.comand is listed with is permission at the conclusion of this chapter. It is a wise compilation and deserves widespread attention.


Kirk, a Parkie, has devoted much of his great energy and intelligence to designing new care systems for PWP. I will write more about Kirk’s work in later chapters.


One of Kirk’s recommendations deserves special note: the invaluable PF publication Parkinson’s Disease Q&A Seventh Edition.


The most complete PD compendium is the Davis Phinney’s EVC xxxx


I give Q&Aand VC to newly diagnosed Parkies I meet. I deliver t]hem in medical offices that are likely to see PD patients. Order it free on www.pdf.org. Order xxx


When my initial reporting was done, I wrote a column for The Tampa Tribune(1). Excerpts follow:


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 is invaluable.Many of us see a general neurologist for our care, without realizing we might benefit from seeing a movement disorder specialist (MDS). An MDS is a neurologist, who has undergone two years of additional training. An MDS 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, sustainedexercise (such as boxing, Tai Chi, Hatha yoga, interval cycling) can ease symptoms, combat fatigue and reduce stress. Regular daily activity (going for walks, doing the laundry) can also 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, the knowledge of nutritionists and psychotherapists and the wisdom and moxie of social workers. 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 considerable effort to assemble that team.


All support groups are not created equal.Support groups have different constituencies (young/elderlyonset, 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.


Here’s Kirk Hall’s useful resource guide (2):

Help locating a movement disorder neurologist and why this is important:     – Michael J. Fox Foundation (MJFF):https://www.partnersinparkinsons.org/find-movement-disorder-specialist?cid=aff_00032

 – Parkinson Disease Foundation (PDF):http://www.pdf.org/spring12_specialist


Exercise information:

 – Davis Phinney Foundation (DPF):http://www.davisphinneyfoundation.org/living-pd/10tools/?gclid=Cj0KEQjw75yxBRD78uqEnuG-5vcBEiQAQbaxSNfO0tFlTMxBMKAMkKJ6jp6-tzI7Y4nwRBFoEliVcgcaAkdv8P8HAQ

 – Brian Grant Foundation (BGF): http://www.briangrant.org/

 – National Parkinson Foundation (NPF):http://www.parkinson.org/understanding-parkinsons/treatment/Exercise/Neuroprotective-Benefits-of-Exercise

 – PDF:http://www.pdf.org/en/parkinson_exercise_impact


Newly diagnosed information:

 – PDF:http://www.pdf.org/symptoms

 – NPF:http://www.parkinson.org/understanding-parkinsons/what-is-parkinsons

 – MJFF:https://www.michaeljfox.org/understanding-parkinsons/index.html?navid=understanding-pd

 – American Parkinson Disease Association (APDA): http://www.apdaparkinson.org/parkinsons-disease/understanding-the-basics/


Young onset information:

 – APDA: http://www.apdaparkinson.org/national-young-onset-center/

 – NPF:http://www.parkinson.org/understanding-parkinsons/what-is-parkinsons/young-onset-parkinsons


Help locating a support group (PWP & care partner):

 – NPF:http://www.parkinson.org/find-help/resources-in-your-community

 – PDF:http://www.pdf.org/en/support_list

 – APDA: http://www.apdaparkinson.org/resources-support/local-resources/

 – PDF:http://www.pdf.org/en/airpo


Help locating a caregiver support group:

 – Parkinson’s Health (PH):http://www.parkinsonshealth.com/Caring-for-Someone-with-PD/Support-Groups.aspx


Talk directly to a person who can help:

 – NPF:http://www.parkinson.org/find-help/helpline

 – PDF:http://www.pdf.org/en/ask_expert

 – MJFF: https://www.partnersinparkinsons.org/parkinsons-advocate-program?cid=aff_00032


Lesson Learned:


Three websites provide a wealth of reliable Parkinson’s information: Parkinson’s Foundation (parkinson.org), Michael J. Fox Foundation (michaeljfox.org) and Davis Phinney Foundation (davisphinneyfoundation.org).