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Our Book Is Out!

Counterpunch: Duking It Out With Parkinson’s by Gil Thelen with C. Struby Thelen

Click the Buy now button to purchase from bookbaby.com
All proceeds from the book go to the Me-Over-PD Foundation.

Overview

A Hall of Fame Newspaper editor describes his turbulent journey of discovery with Parkinson’s. Gil Thelen confronts this malady with infinite faces and—using keen reporting and engaging prose—offers inspirational and practical ways to foil the beastly tenant in his brain. Armed with Cornell medical training, a background of health and medical writing, and activism in national and local Parkinson’s communities, Gil tackles his condition head-on. In two chapters, his wife Struby courageously reveals the devastating impact Parkinson’s and its drugs have had on their marriage.

From both Parkie and care partner perspectives, Gil and Struby bare PD stumbling blocks and share workarounds to counterpunch this condition by taking aggressive action to stay upright, moving, productive, and to NOT be a victim. The perfect read for the newly diagnosed, looking for insights into Parkinson’s, as well as anyone looking for guidance, either personally or professionally to help others, in fighting back against this baffling condition. An outstanding collection of recommended resources and suggestions for Parkies to get informed, get organized and get MOVING.

All proceeds from the book go to the Me-Over-PD 501(c)(3) Foundation, dedicated to creating live, local databases of crucial Parkinson’s resources in communities across the United States.

 

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Parkinson’s “Pandemic” Part 2

A Florida Parkinson’s expert relates how five members of her family or close professional circle have been touched directly with a PD diagnosis.

An Alabama health system contacts me for advice on dramatically increasing their Parkinson’s patient-care efforts. The reason? A powerful member of their leadership structure just received his PD diagnosis.

Those examples encapsulate elements that a coming Parkinson’s “Pandemic” might contain. (That head-snapping word came from an expert PD panel early this year.)

Now juxtapose “Pandemic” with this fact: Only 50 neurologists are training in the U.S. to become top-shelf Parkinson’s specialists (Mobility Disease Specialist or MDS for short).

Baby-boomer doctors of all specialties are aging out, retiring from practice.

The Mobility Disease Specialist crisis (my term) looks like this now: Large geographic areas are without any practicing MDS. An example is the almost two dozen counties in Macon and Central Georgia, where I live.

Parkies like me must travel two to five hours to receive treatment from an MDS in Atlanta, Augusta (GA), Jacksonville (FL) or Gainesville (FL).

Metro areas have seen a sharp reduction in practitioners who are expert in PD and are treating PWP, such as San Antonio, which has gone from 20 to 3.

There are numerous disincentives to becoming an MDS.

One is money.

Insurers led by Medicare are not providing adequate reimbursement support, such as payment for “long” patient visits necessary for proper PD care. Long here means more than 10 minutes.

Pharma is withdrawing its already inadequate support for, and from, development of PD medications.

How do we fill the void so that PWP might “live well” with their condition?

It seems logical that non-MDS neurologists, geriatric specialists and generalists will be forced into the gap and must receive much more training in this diabolical, unique to the individual condition. Same goes for related, non-MD professionals, such as PAs and nurses.

Healthcare consultant Kim Blasingame wrote in September that neurology professionals have sounded the supply-demand warning since 2013.

She described the “perfect storm” this way: “The neurology workforce supply is constrained from many sides. Factors including government policy, advances in neurological care, demographic changes, failure to innovate, and changing clinician work/life balance expectations are limiting growth in the supply of neurology patient care. But it is the convergence with another force – demand expansion – that is creating the perfect storm.”

https://www.mgma.com/MGMA/media/files/fellowship%20papers/2018%20Fellows%20Papers/Neurology-Workforce-Shortage-KB-FACMPE-FINAL-9-20-2018.pdf?ext=.pdf

It also follows that patient education and self-help efforts must grow, enormously. We are stronger together, as our energized Parkie Tribe in Macon (GA) is demonstrating, led by my Me-Over-PD Foundation.

I explore those patient-led, care initiatives in my and my wife’s just-published book “Counterpunch: Duking It Out With Parkinson’s.” It is available in paperback and eBook.

There is reason for Hope, our life blood. The journey will be demanding, as always with the unwelcome Parkinson’ tenant in our brains.

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Titanic Consequences of a Parkinson’s Pandemic

The big buzz in Parkinson’s Land is the expert panel of neuros warning of a coming Pandemicof Parkinson’s cases. Their projection of PD incidence doubling by 2040 is notnews.

Their hyperbolic language is new. “Pay attention higher powers in healthcare and government,” would seem the panel’s urgent message.

But the panel omitted mention the real catastropheheaded for Parkie patients like me.

There are only 50 neuros in training in the U.S. to become top-shelf experts in Parkinson’s and related disorders. Their title is Mobility Disease Specialist (MDS). (I double-checked that number with the estimable Michael Okun. “Accurate,” he wrote.)

Baby-boomer docs of all persuasions are reaching retirement age. That most definitely includes MDSers.

I live in Macon, heart of Middle Georgia, comprising about two-dozen counties. We have NO practicing MDS neuros. Not one.

The closest centers with MDS neuros are Atlanta, Augusta (GA), Jacksonville (FL) and Gainesville (FL). From Macon, that’s a one-way drive of between two and five hours. Ouch!

Patients need an MDS to prescribe –precisely– medications and to help write a personal healthcare plan.

Experience tells that such a plan comprises three essential components: 1. Informed and empowered patient and care partner. 2. An integrated healthcare team. 3. A local Parkinson’s Center, virtual or bricks-and-mortar, that assists a patient locate resources necessary to fulfill their plan and “Live Well” with their disability.

Those 50 neuros in MDS training translates to roughly one per state.

Ponder that Titanic mismatch.

 

 

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“Counterpunch” book launched

The book Struby and I have worked on for over two years is out. Its name is “Counterpunch: Duking It Out With Parkinson’s.” (Cute, huh?)
It chronicles our journey with The Beast in my brain and its profound impact on both of us. (I am doing fine, BTW.)
Struby memorably opens the first of her two chapters this way:
“If you had behaved like this when I met you, I never would have married you.”
Ouch!
Dave Lawrence, retired publisher of The Miami Herald has read the book. He floored Struby and me with this message:
“I love your book for many reasons, among them:
“– The honesty of the story you tell so well. There is no pussyfooting. It is straightforward and then some — and loving, too. You make it all so ‘real.’
“– It will be a great practical and genuine “gift” for so many families.
“I am proud to know you both. The book deserves to be read. “
It’s been an emotional 10 days since the print copies of “Counterpunch” landed on our porch.

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Seize The Day

I cherish good writing, especially about life’s great mysteries, such as finding hope while facing a monstrous disease.
We Parkies know hope is essential to muster arms each day against the Parkinson’s Beast living in our mental attic.
Kate Bowler is a thirty-something, divinity professor at Duke. She has stage-four colon cancer.
Married with a small child, she lives each day as if it were her last.
She seizes the day.
Bowler shared in a recent New York Times piece the conversation she had with a Duke colleague about hope and happiness.
“Would you agree that true happiness is to enjoy the present without anxious dependence on the future?” he asked Bowler.
Jesus Christ talking? Nope.
“That was Lucius Seneca, the ancient philosopher of Stoicism,” her friend said. “Look, it takes great courage to live as if each day counts. That was a fundamental insight of Stoicism.”
I, too, am the seize-the-day type. Never knew that came from Stoicism. I do now.
Please take a few minutes to read Bowler. She is a splendid writer who makes every word count and every paragraph graceful.
The URL is:
https://www.nytimes.com/2018/12/28/opinion/sunday/resolutions-hope-cancer-god.html”>https://www.nytimes.com/2018/12/28/opinion/sunday/resolutions-hope-cancer-god.html

 

 

 

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Knowing Doc Parkinson Better

 

What I knew about Parkinson’s going into 2018, I know better coming out of the year.

Foremost, intense exercise—think Rock Steady Boxing—halts PD progression, even reverses the damage. Medications only stabilize. The right kind of very frequent and intense exercise heals. Research is clear about this.

Stress is a Parkie’s greatest foe. PD strains even strong marriages to breaking points. It’s the rare care partner who can fully understand the inner turmoil PD produces.

A Parkie couple in Georgia we know, separately, sought Struby’s and my advice about finding a marriage counselor. He did not think his wife “got” what PD was doing to him; she struggled with living with her ”changed” man. She wanted her old husband back. A funny and sad story at the same time.

PD education must be accompanied by personal action steps to make a real difference. The education/action duo is ground level work– Parkies fighting from foxhole to foxhole together. With the possible exception of the Davis Phinney Foundation, PD foundations operate thousands of feet above ground: seminars, podcasts, brochures, books, websites.

Theologian Richard Rohr famously writes that setbacks, such as PD, can be moments of intense passage to previously unimaged maturity. He calls it “Falling Upwards.” Hope springs from that falling.

PD robs many of us of executive functions, such as juggling tasks. For me that means one thing at a time, keeping matters simple.KISS principle.

Hopeis the crucial factor in facing the uncertainties of each day. Without it, self-pity and passivity grind down your capacity to go forward with passion and determination.

Laughter is an essential counter to PD’s absurdities. Lose the car keys again and again. Laughing beats crying.

You are not alone in your struggle. The small community of fellow Parkies, your Tribe, lifts you with their resilience and determination to live well with Parkinson’s. The larger community provides the support you need.

Your health care professionals must work as a team on your behalf, not individually, for best results.

Deepening Faith in a higher power points you in the right direction in your journey. Listen carefully to that small voice in your head.

The inertia and inward focus of large health care organizations often hinders innovation in PD patient care. Small and flexible is better.

 Radical Candor (Barbara Bush remembered) cuts through the usual pleasantries and evasions in our lives. Tell the truth, however disruptive, always.Make Good Trouble on behalf of your Parkie Community.

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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.

http://www.smobserved.com/story/2018/06/09/news/diagnosised-of-parkinsons-disease-anthony-bourdain-decided-to-quit-rather-than-fight/3483.html

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.)


https://thecrookedpath.net/2014/08/14/there-but-for-the-grace-of-god/

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

 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

 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.

“Neurorestoration

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:

http://www.morningread.com/features/0a9b329d-6c96-4615-b1ad-44cca4b6a9ba

 

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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.

 

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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!