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.
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.
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.
“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!”
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.
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.
“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.
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.
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.
I thank two quite different urologists for my escape from Bladder Hell. That awful state is bipolar: urine dribbling at the benign end and pee flooding the shoes at the catastrophic end.
David Paulson is my 80ish, ATO fraternity brother at Duke and retired chief of Urology at the Duke Medical Center. Brian Geary is a 40ish University of Alabama-Birmingham Med grad who lives in Macon, GA, my home.
Paulson is formal and elegant, always has been. Plays golf and tennis at his retirement home in the Palm Beach area.
Geary calls himself a Bladderologist, favors a scruffy beard and wears baggy, blue scrubs for office visits.
He knows of Paulson; Paulson knows him not. No surprise.
Geary uses a Sharpie to draw cartoon-like pictures of urinary anatomy and function. We giggle a lot together at office visits. He’s very glib and extremely funny.
Paulson expertly guided me to the University of Florida Shands Center for expert PD treatment.
Geary is retraining my bladder, with my small assistance, to quit dribbling, then flooding urine. I have reduced my urinations 50% in six weeks. No catastrophes during this period. Minimal dribbles.
Bladder problems are common in Parkinson’s cases and difficult to treat, say both Paulson and Geary.
Geary, compassionate and wise beyond his years, believes the medical community should care as much or more about extending patients’ quality of life as they do extending biological life. I’m with him on that.
Excerpts from a very interesting email exchange I had with Brian follow, quoting his words.
“I hope you will use your influence in the Parkinson’s community to give them some hope that their ‘pee problems’ are not ‘always’ because of the Parkinson’s. But that’s what happens when the neurologist are the first docs to ask (or actually listen) about bowel/ bladder issues.
“It’s been my experience in caring for these patients that bladder/bowel issues play a major role in the conscious and subconscious self-esteem and thus overall quality of life.
“Remember medicine –as a collective whole– has spent the last 50-plus years prolonging life without ever stopping to focus on the quality of the years added.
“One day I hope there will be a sub specialty in bladderology, so I won’t sound as crazy when I tell my patients that I’m a bladderologist.
“Don’t forget to let me know when you sit down with Doctor Oz to discuss your book. Remember to ask him why he likes to wear scrubs two sizes too small for me.”
Shall do, Brian. Want a press agent? I’m it, Amigo.
My and my wife’s “Counterpunch” book was published in January by Book Baby. The reviews are quite strong and sales are increasing by the week. I share the letter to donors to my Me Over Parkinson’s Foundation. It contains a synopsis of our wok in Tampa, Macon and soon Detroit.
XX February 2019
The work of the Me Over PD (MOPD) Foundation is gaining significant momentum and positive national attention.
My and my wife Struby’s book, “Counterpunch: Duking It Out With Parkinson’s,” was published in January to positive reviews. Most notably, acclaimed Parkinson’s expert Dr. Michael Okun calls “Counterpunch” an “astonishing achievement.”
The Mercer Medical School is interested in placing the book in the offices of 360 frontline physicians in their Georgia network, a potentially huge outreach to thousands of sufferers. All proceeds from book sales go to our foundation for its work.
Our groundbreaking research in Tampa (University of South Florida) to create an easily accessible, curated database of local support services for Parkinson’s sufferers is in final field testing. Patient advocates in other regions have asked to use our finished model to bolster their work.
In Macon, GA, our home, MOPD has trained more than 50 patients and care partners in the complexities of PD and action steps to “Live Well With Parkinson’s.”
Our pioneering, ground-level work is especially important with the projected flood of new PD cases – just as the number of top-shelf PD experts is declining precipitously. PD experts are warning this mismatch of demand and supply a “Perfect Storm” and a “Pandemic” in the making.
In Middle Georgia, comprising more than 20 counties, there is no practicing, top-level PD expert (Mobility Disease Specialist). The story is similar in other states.
My foundation needs your help to grow and help many more PD sufferers. We plan to be operational in a third area, Detroit, by mid-year.
Your support has been essential in our success, which creates the need for additional resources to bring our work to full flower.
My “ask” is a $xxx tax-deductible contribution to our 501(c)3 foundation, whose address is below. I will call you to explain our unmatched, in-the-trenches work with Parkinson’s people.
I am deeply grateful for your friendship and support.
My best wishes always,
Me Over PD Foundation is a 501(c)3 organization Continue reading “MOPD Progress Report”