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2019 Report to Middle Georgia Parkinson’s Community

 

The Parkinson’s Community in Middle Georgia—you fighters– stepped up to wallop a bunch of homeruns in 2019.

The 50-plus graduates of the  Parkinson’s study-and-action group successfully advocated for the introduction of the acclaimed PD exercise and treatment program, Rock Steady Boxing. The Macon-Bibb Parks and Rec program quickly became over-subscribed, necessitating a waiting list. Navicent Health assisted this effort. 

Members of the Parkinson’s Community–now over 100–spoke to Mercer Medical School students in Macon and Savannah about our  fast growing, complex and disabling condition. Those young doctors gained the necessary knowledge to diagnose and quickly treat PD when they enter practice When many doctors diagnose Parkinson’s now, they omit any actionable information about the condition, saying only  fill this prescription and return in three months. Sufferers are left to anguish about what will happen to them and their family.

Our Community addressed that information vacuum in an unprecedented   way. We won  a $10,000 grant from the Peyton Anderson Foundation of Macon to distribute an easily understood primer for newly diagnosed patients.

Some 2,000 copies of “Counterpunch: Duking It Out With Parkinson’s” were distributed to 373 medical offices throughout Georgia connected with Mercer Medical School. Medical Dean Jean Sumner’s strong leadership drove the program.

Mark Lawler, our digital information leader, completed his mission of strengthening our monthly support group hosted by Navicent. Attendance has routinely increased four-fold and more.

A fifth initiative carries over into 2020. It involves using the reach of telemedicine to compensate for the absence of any practicing Parkinson’s specialist in Middle Georgia.

National Parkinson’s specialists warn of a coming “Pandemic” of new cases in the next 20 years, with a doubling of incidence worldwide.

Their fervent words come as the supply of neurologists specializing in Parkinson’s and related neuromuscular disorders is dramatically shrinking. A neurology consultant calls this demand-supply imbalance a “Perfect Storm.” 

Only 50 neurologists are training in the U.S. to become Parkinson’s specialists (Movement Disorder Specialist or MDS). That number barely touches the retirement rate of current specialists.

That shortage helps explain why only an estimated 10% of Parkinson’s patients ever see an MDS. Another 30% see a neurologist of some kind. The remaining 60% are treated by a generalist, gerontologist–or sadly receive no treatment.

Patient education and self-help efforts are growing worldwide. The Parkinson’s Foundation and Davis Phinney Foundation are placing new emphasis on assisting grassroots education and patient empowerment efforts such as ours in Middle Georgia.

They tell me that they like our innovative work together as a community.  And we’ve just started finding ways to defy The Beast we share.

Happy New Year,

 

Gil