Uncategorized

Stronger Together

I was looking forward to, and fully prepared, for our Parkinson’s potluck lunch the first Saturday in November. Or so I thought.

Unanticipated was the ginormous emotional openness and laughter that would fill every room in the gracious home on Stanislaus Circle in mid Macon.

I had expected camaraderie. Huge waves of affection among the Parkinson’s Fighters, not so much.

The 40-plus men and women represented a large slice of the organized Parkinson’s Community in Middle Georgia.

There was Sarge, the taciturn and very tough Army vet from Perry, holding court in the dining room.

In the living room, Fred and Mary Ann energetically introduced a newly diagnosed friend, their local newspaper editor in Fort Valley.

The lawyers’ caucus exchanged notes in the breakfast room about downsizing from their large homes.

The Rock Steady boxers made merry around the pool, punctuated by the bark of Sam’s signature laugh.

Those defiant people proved again the under-appreciated power of social connections to combat chronic disease and extend full lives.

The Community had reason to celebrate. They had moved the PD equivalent of small mountains in 2019.

Foremost was the breakthrough distribution of 1,800-plus copies of my and Struby’s book “Counterpunch” to over 360 frontline medical practices throughout Georgia connected to Mercer University School of Medicine.

A $10,000 grant from the Peyton Anderson Foundation of Macon made possible that unprecedented information outreach to Parkinson’s patients, new and existing.

A close second was the astonishing enlistment for the new Rock Steady Boxing affiliate in Middle Georgia. Forty-two boxers and care partners are active enrollees, the vast majority coming from our Parkinson’s education and engagement programs. Rock Steady is the proven, premiere, exercise therapy program for Parkinson’s.

The pioneering, ground-level work of my foundation (Me Over PD) is especially important with the projected flood of new PD cases – just as the number of top-shelf, PD experts is declining precipitously (none in Middle Georgia). PD experts are warning this mismatch of demand and supply is a “Perfect Storm” and a “Pandemic” in the making.

The PD Community’s planned work for 2020 includes resuming Study/Action training when feasible, increasing the frequency of the potluck reunions, meeting again with Mercer Medical students and continuing to make “Counterpunch” available to medical offices working with Mercer and beyond in Georgia.

Uncategorized

Parkinson’s Steals My Fingers

I wrote last about how vigorous hand exercises restored a measure of fine motor skill in my fingers. I could again handwrite.

The implacable Parkinson’s Beast within did not like my small victory.

It bit back. Hard.

I took a three-day trip to Philadelphia in late September. I traveled alone due to my wife’s grounding for chemotherapy.

Arriving in Philly,  I realized the small pouch containing my car and house keys was gone. I had unknowingly dropped it going through TSA security in the Atlanta airport.

Returning to Atlanta, I used my credit card to pay for the taxi ride. I was paged at the airport. The virtuous taxi driver had found the card on the floor of his back seat. He was frantically trying to return it.

Only then did I fully realize what had happened. I had lost all feeling in both hands. That remains the case.

The key pouch was found in the Atlanta airport and returned to my Macon home by FedEx.

My touch has not been returned. That bastard Parkinson’s has it.

 

 

 

 

 

 

 

 

 

Uncategorized

Teeny Tiny Handwriting Be Gone

Fellow Parkinson’s Fighters,
My most puzzling PD symptom before diagnosis was a leathery feeling in my hands.
Imagine wearing thick work gloves to a restaurant. My “gloves” made it difficult to cut food, sign the check, handle my car keys.
My hand writing was illegible. Buttoning just a memory.
That was my life until mid-August. It isn’t now.
Untouched in my computer had been an article about hand exercises for Parkinson’s sufferers. I opened it and tried the exercises.
Wallah! Bingo!
In two weeks the work gloves were traded for the the feel of a fine pair of cabretta leather golf gloves.
Handwriting is again legible. I’m cutting my food and fumbling less handling small items of daly life.
I’m not yet buttoning very well. Perhaps that recovery is next.
I can only surmise what is happening physiologically to explain the incredible results.
Not enough time has passed to make this a neurogenesis event. Perhaps he answer is enhanced blood flow in my hands.
Here’s the URL for the article:
Uncategorized

$10,000 Grant to Distribute 2,000 copies of “Counterpunch”

My MOPD Foundation has received a $10,000 grant from the Peyton Anderson Foundation of Macon.

The funds are for purchase and eventual distribution of 2,000 copies of “Counterpunch” to 360 frontline physicians around the state allied with Mercer Medical School. Each physician will receive five books to form a lending library for patients.

I believe this project is a first in the country. I salute Mercer Med for its leadership under Dean Jean Sumner, a noted rural health activist.

Distribution will begin to physicians in Macon-Bibb with a Sept.1 target date. After evaluation and process validation, we will complete distribution to remaining Georgia offices in person or by mail.

This is a great win for Parkinson’s sufferers today and to come. Parkinson’s people rarely receive information about their condition at diagnosis and are abandoned to the wiles of the internet and worse. I believe “Counterpunch” provides the information needed to take action against this mystifying malady, The Rodney Dangerfield of diseases.

 

Uncategorized

Holy Smokers: Jake and the Hippie Monk

Good morning my spiritual counselors— Justin LaRosa, the Tampa monkish hippie and Jake Hall,the Macon Gospel Gothic radio star.

Got “Holy Smokers” from Jake, referring to a group of cigar smoking ministers to be in Atlanta.

I posted on Shuffling Editor Wednesday a piece about Struby and me and our maladies. Struby has begun treatment for metastatic breast cancer. I have Parkinson’s.

The two us have entered an existential and spiritual space together that holds opportunity for great learning as well as obvious peril. I will chronicle our new journey on the blog as it unfolds.

The wonderful “preaching” by Pat Pawelkop in the post has a deeper meaning for me. It shows again the healing power of community.

Writing the piece also brought to mind something I wrote in “Counterpunch” about clearing mental clutter as we age and grow spiritually.

Here it is:

“I also decided to stop wasting time with people who do not challenge, nourish or really matter to me.
“Hear the words of Mario de Andrade from “The Valuable Time of Maturity.”(13) He is a Brazilian poet, novelist, musicologist, art historian and photographer.
“I want to live close to human, very human people, who laugh at their own stumbles … close to those who do not run away from their responsibilities, who defend human dignity and who only want to walk on the side of truth and honesty…

“The essential is what makes life worthwhile. I want to surround myself with people who know how to touch the hearts of people; people whom the hard knocks of life taught to grow with softness in their soul.

“I am in a hurry … to live with the intensity that only maturity can bring.

“My goal is to arrive at the end satisfied and in peace with my loved ones and my conscience.”

Thanks guys for walking with me.

Much love,

Shuffling Editor

Uncategorized

Cancer Emperor Meets Rodney Dangerfield

My wife’s and my journey with Parkinson’s has entered a confounding new place. Struby has begun treatment for metastatic breast cancer. All signs are positive. Her care team is vetted and solid.

“The Emperor of All Maladies,” cancer, is joined with the Rodney Dangerfield of maladies, Parkinson’s. Too funny in a weird way.

Struby and I now wear two hats, patient and care partner. Tricky? You bet.

Today I am 80% partner and 20% patient. Yesterday Struby had surgical implantation of a chemo port above her left collar bone. The port allows smooth administration of cancer-killing meds. Total success. Hair loss to come.

I am known to make messes around the house, most especially connected with my cigar pleasures. I am newly mindful of minimizing domestic disorder.

I am also mindful of putting my wife’s needs first, ahead of my Parkinson’s work.

One of Parkinson’s gang (P-Daggers) in Tampa nailed my new responsibilities. Her name is Pat Pawelkop. Here’s our recent exchange.
Dear Pat,

 “I know fully well how you, without fail, detect–then leaving no tracks–hose down cant, bullshit, pomposity, narrow-mindedness, etc. 

 “What you wrote (following) sets me in my place with a clear set of instructions on being a CARE PARTNER.

“Got it. Turbos on.

Pat’s words to my wife;

 “Please (Struby) remind him, if necessary, (probably likely…!) that there are MANY CAPABLE PD warriors, who are all carrying on the fight, while Struby has ONE HUSBAND, who promised to be by her side through thick and thin. You must be his top priority and perhaps his ONLY priority in the coming months. 

“If he needs his butt kicked in this regard, please let us know. I’m sure every one of us P-Daggers would be happy to take him on. Just say the words!”

 

 

 

Uncategorized

A FRAIL SWING. BUT I DIDN’T FALL DOWN

Golf had been in my life for 60+ years. I have experienced wonderfully magical moments on great courses, playing alongside editor buddies at Cypress Point, Bandon Dunes and Pinehurst, to name but three.

I’ve always been more a ball “striker” than “player.” Hitting a pure shot in the exact middle of the club has mattered more to me than winning a hole. (Sorry, playing partners, for lost bets.)

My handicap was a not-too shabby “7” at age 50. That was on my tough, home-course, Wachesaw Plantation in Murrells Inlet, S.C.

I shelved golf in 2014, the year my Parkinson’s was diagnosed. That monster was, and is, pounding my autonomic nervous system, especially equilibrium and balance functions.

I was unable to swing without falling down for three years. Physical therapy and intensive exercise brought my game back in 2018, albeit with a swing modified for Parkinson’s. (Technically, maximum possible trunk rotation with minimal arm turn.)

 Encore June 8, 2019.

My longtime, travel group was playing the Senator course at the Robert Trent Jones Trail course in Prattville, Alabama.

I joined them from my Macon home for the day, more tag-along observer than player. I did, however, swing without falling down.

Halleluiah!

This story is about a group of guys connected by golf who became a tribe of close—and gently needling–friends. You couldn’t expect more, or less, from a bunch of top newspaper editors — most of them retired rather than daily practitioners of their journalism craft that Saturday in Prattvile.

The Fourth Estate Golf Society (FEGS) came to be in the mid-to late 1980s at a convention hotel bar in Washington, D.C., legend has it.

 

The late David Burgin turned to his buddy Will Jarrett and said something choice like this: “I am bored as shit by this fucked up meeting. Let’s go play golf.”

They did, then decided to form a group of golfing newspaper editors who would gather each year in late Spring or early Summer at first-rate golf resorts.

For a figurative five minutes, Dave and Will conjured their group’s name as the First Amendment Golf Society. The acronym FAGS didn’t quite work for the two machismo guys.

Thus, FEGS was born.

I was invited to join in the late 1980s when I was editor of The Sun Newsin Myrtle Beach.

At its peak, I remember as many as 20-24 players making the five days of golf at superb courses: Hilton Head, Pebble Beach, Kiawah, Cherry Hills, Whistling Straits, to name but a few.

Our overt bond was a game. The subtler tie was emotional. FEGS guys could and do call on one another for all manner of support, professional and personal.

The rollcall of members includes top shelf, prize-winnings editors and related newspaper executives, such as the late Charles Cooper (our detail guy and historian), Peter Bhatia, Larry Tarleton, Don Nauss, Jim Box, Walter Mears, Frank Denton, Jim Baltzelle, Mike Waller, Jeff Cohen, Craig Ammerman, John Matthews, George Blake, Joe Urschel, Bob Duffy, Darrell Christian, Mark Mulholland, Bil Horton, Reid Miller, Jack Osteen, Byron Yake, Steve Wagenlander.

FEGS this year numbered eight players. Morbidity and mortality have taken their toll.

Those eight, and those who couldn’t join this time, are my golf tribe.

Forever.

 

 

 

 

 

 

 

 

 

 

 

Uncategorized

“Counterpunch” Receives News Attention

“Counterpunch” and MOPD received favorable newspaper attention this week.

Doug Clifton, retired executive editor of the Miami Herald,wrote about Parkinson’s in the South Florida (Fort Lauderdale) Sun-Sentinel (below).

Clifton’s op-ed carries extra authority beyond his journalism credentials. He served as a combat officer in Vietnam and was exposed to Agent Orange. He was diagnosed with PD in 2013.

http://www.sun-sentinel.com/opinion/commentary/fl-op-com-parkinsons-disease-20190510-o56sr6ujuzb6zj6kfvelih57yy-story.html

 

Uncategorized

Cutting Through PD Pap

Meet Kirk Hall, my great Denver friend and  maker of “Good Trouble” on behalf of fellow Parkinson’s fighters.

Kirk is a bear of a man. That, and his rumbling voice, command attention.  He’s usually the smartest guy in the room, and people know it. I do.

Kirk was and is a marketer. His product now is a cause: better lives for fellow Parkinson’ sufferers. He blogs and writes books about PD, his best known being “Window of Opportunity.”

We met electronically in 2015. Each of us was urging the Parkinson’s Foundation to make palliative care that year’s topic of concern. PF did.

Kirk writes about the end of our journeys with Parkinson’s. He cuts through the feel-good pap about “something else will kill you first, not PD.”

Read his words More time 1 and More Time 2.

I, for, one will never forget them.

 

it: http://www.shakypawsgrampa.com/index.php/new-blog/entry/more-time-1and http://www.shakypawsgrampa.com/index.php/new-blog/entry/more-time-ii

 

Uncategorized

I AM A PRIVILEGED PARKIE

I am a privileged Parkinson’s person.

Resources permit to have an able health care team, headed by a superb Parkinson’s specialist (MDS). On it are my family doc, my urologist, GI specialist, PT, and psychotherapist. They keep me upright, moving and relatively pain free.

I am blessed.

Only 10 percent of Parkies ever see an MDS. Another forty percent are treated by a neurologist. The remaining 60 percent see a family doctor or receive no treatment for this monstrous condition. They are denied access to the latest, improved medications.

How much more broken can Parkinson’s treatment become? Just wait for the projected doubling of PD cases in the coming two decades as the supply of MDS specialist shrinks.

Disaster is us

Buckle up, suit up and demand proper treatment. Make some “good trouble” for yourself and fellow Parkinson’s patients.

Do it. Now.