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MOPD Progress Report

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

Dear xxxxx

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,

Gil

Me Over PD Foundation is a 501(c)3 organization Continue reading “MOPD Progress Report”

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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.