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Folks with Parkinson’s face extra battle because of shortage of specialized doctors

Glenn Lurie, 57, was diagnosed with Parkinson’s disease several years ago. He decided to meet the disease head on with exercise, such as walking on a tread mill or punching and kicking a heavy bag, and taking medication. In Macon, many people with Parkinson’s are making use of the Rock Steady Boxing program.
Glenn Lurie, 57, was diagnosed with Parkinson’s disease several years ago. He decided to meet the disease head on with exercise, such as walking on a tread mill or punching and kicking a heavy bag, and taking medication. In Macon, many people with Parkinson’s are making use of the Rock Steady Boxing program. TNS

Middle Georgia lacks any practicing Parkinson’s disease specialist. That’s zero Movement Disorder Specialists for thousands of Parkinson’s sufferers in a large part of our state.

Parkies like me must travel two to five hours to receive treatment from an Movement Disorder Specialist in Atlanta, Augusta, Jacksonville, Fla., or Gainesville, Fla.

This shortage of experts is part of what leading Parkinson’s experts this year called a coming Parkinson’s “pandemic,” a projected doubling of cases in the next 20 years.

Juxtapose “pandemic” with this fact: Only 50 neurologists are training in the U.S. to become top-shelf Parkinson’s specialists. That number barely touches the retirement rate of current specialists.

Parkinson’s patients are organizing self-help programs to fill the void.

In Macon, Parkies successfully advocated to bring the gold-standard exercise program, Rock Steady Boxing, to Middle Georgia. Almost 30 fighters are enrolled after only four months, an unusually strong start

Also, in Macon more than 50 patients and care partners have completed training in the intricacies of Parkinson’s disease in the past year. They are taking action to better their lives through dietary, exercise, life-style and other changes. Those efforts are led and funded by my Me Over PD Foundation.

Mercer Medical School has joined hands with local Parkinson’s activists to bring comprehensive education about this complex condition to students on both their Macon and Savannah campuses. The goal is to speed diagnosis and treatment in coming years.

Parkinson’s disease is an ultimately unknowable neuromuscular — and more — condition. Each case is unique to the person. Even the numbers are approximations. One million cases in the U.S. Seven million worldwide. Fifty thousand new cases a year in the U.S. Second most common neurological disorder after Alzheimer’s.

Several factors account for the mismatch between the projected doubling of Parkinson’s cases and the shortage of expert care.

There are numerous disincentives to becoming an Movement Disorder Specialist, starting with money. Insurers led by Medicare are not providing adequate reimbursement support, such as payment for “long” patient visits necessary for proper Parkinson’s disease care. Long here means more than 10 minutes.

Pharmaceutical manufacturers have withdrawn their already inadequate support for development of new Parkinson’s disease medications.

How does the medical community fill the void so that Parkinson’s sufferers might “live well” with their condition?

Non-Movement Disorder Specialist neurologists, geriatric specialists and generalists are being forced into the gap and need much more training in this diabolical, unique to the individual condition. Same goes for related, non-MD professionals, such as PAs and nurses.

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

She described what’s ahead this way: “The neurology workforce supply is constrained from many sides. Factors including government policy ... demographic changes, failure to innovate, and changing clinician work/life balance expectations (that) 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.”

I explore 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 e-book.

There is reason for hope, our Parkie life blood. The journey will be demanding, as always with the unwelcome Parkinson’ tenant in our brains. We are determined to persevere.

Gil Thelen, a Macon resident, is president of the nonprofit Me Over PD Foundation and is the retired president, editor and publisher of The Tampa Tribune. He can be reached at gthelen1@icloud.com or 813-787-3886.

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