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.
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.
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.”
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.
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.
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.”
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.
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.
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.
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:
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.