MOPD started with information, or more accurately, the lack of information readily available to Parkinson’s sufferers. At diagnosis, most Parkies receive no information about their condition from their doctors. They stand alone, not knowing where to turn for valid, accurate guidance about what’s ahead for them and their families.

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Six Tampa couples, patient and care partner, completed training in the PD SELF program in 2016. They formed a “post graduate” group called the Parkinson’s Disease Action Group (PDAG) and added four like-minded couples. Their goal was to create a local resource of health-related services available to Parkinson’s people.

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MOPD’s information mission has expanded to direct action due to the critical shortage of PD specialists, neurologists further trained as Movement Disorder Specialists (MDS).

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A MDS designs and directs a patient’s individual care program. Patients acting alone and together are forced to fill the crucial gap between demand for services and the dwindling supply of MDS neurologists.

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MOPD’s hallmark is Study/Action groups of patients and care partners (tribes) who learn about PD together and create personal and group action plans.

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One example is how the Macon, GA, Tribe drove the formation in Middle Georgia of Rock Steady Boxing, the acclaimed PD exercise program.

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Another example, again Macon, is Tribe members partnering with the Mercer Medical School to educate students about the complexities of Parkinson’s.

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The heart of MOPD’s work is Gil and Struby Thelen’s book “Counterpunch: Duking It Out With Parkinson’s.” The book is the primary “textbook” for the Study/Action groups. MOPD’s “secret sauce” is the power of Parkinson’s People working together at ground level to create powerful camaraderie, which builds a caring and interdependent community of empowered participants.

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