Middle GA Parkinson’s community innovates, partners with nonprofits, universities, hospital

The Middle Georgia Parkinson’s community has sprinted past the rest of the country in creating innovative treatments.

The goal is to live as well as possible with this mystifying, fast-growing, neurodegenerative condition.

In March, the community brought expert care to the 23 counties of Middle Georgia, which have lacked it. That launch was just prior to April, which is designated as Parkinson’s Awareness Month worldwide.

The program is called MDS-Macon. MDS-Macon brings a Parkinson’s expert — a Movement Disorder Specialist — to Macon from Atlanta for quarterly, clinic visits. The follow-up visit is virtual, using telehealth technology.

That rotation of clinic first followed by telehealth will continue as new patients enter the program, which is a first of its type in the country.

Driving the creation of MDS-Macon is an unprecedented consortium of the dean’s office of the Mercer University School of Medicine, Peyton Anderson Foundation, Me Over PD Foundation, Atlanta Neuroscience Institute (ANI) and Piedmont-Macon.

“The addition of needed medical care to the community is wonderful,” said Dr. Jean Sumner, Mercer medical dean. “We have a large number of individuals with movement disorders who are traveling great distances to receive care. The addition of MDS-Macon will add untold benefits to those and others.”

Karen Lambert, president of the Peyton Anderson Foundation, has partnered with Sumner since 2018 in forwarding, grassroots Parkinson’s programs.

“We are pleased and honored to have helped the Parkinson’s Community pioneer in its work,” said Lambert.

In addition, the foundation provided a $40,000 grant to start an exercise program at Middle Georgia State’s Wellness Center in 2022. Its name is PD Fit.

Tony Byram said this about PD Fit, which is also a support program for Parkinson’s sufferers and their care partners:

‘In my 35 years as a high school football coach, I told thousands of kids to get up get up every time you are knocked over. Now, I’m the one knocked over by a Parkinsonism named PSP (Progressive Supranuclear Palsy).

“One reason I keep getting up is my membership in PD Fit. It is filled with fellow Parkinson’s sufferers who provide many examples of courage and dedication in fighting this terrible disease. I have learned I am not alone in my struggles,” Byram said.

Hu Lovein pinpoints the camaraderie among class members.

“You meet and work with people of diverse backgrounds, careers, cognitive abilities and personalities,” he said. “You make new and good friends.”

Parkinson’s is a treatable but incurable neurodegenerative condition affecting an estimated 1,000,000 Americans.

The Parkinson’s Foundation estimates, quite conservatively, that Georgia has 20,600 cases of PD, 500 in Middle Georgia and 200-300 in counties touching Macon-Bibb.

It is projected to pass Alzheimer’s in 2040 as the most common brain disorder.

Parkinson’s stems from the death of nerve cells in the midbrain that produce dopamine and from deposition of an abnormal protein called alpha-synuclein in many regions of the body, including the brain.

Dopamine chemical helps control movements, such as walking, and can affect many other internal systems, including urinary, gastrointestinal and equilibrium/balance.

“The disease has multiple causes including environmental hazards--air pollution, some industrial solvents and particular pesticides,” write recognized Parkinson’s experts Drs. Ray Dorsey, Todd Sherer, Bastiaan R. Bloem and Michael Okun in their authoritative book “Ending Parkinson’s: A Prescription for Change.”

“Up to 40% of people with Parkinson’s will eventually require nursing home care, and the caregiving burden is immense. Life expectancy is reduced modestly and many die from falls or pneumonia.”

Georgia is expected to be especially hard hit due to our rural predominance and heavy use of insecticides and pesticides. Our growing population of military retirees bring with them service exposure to petrochemical compounds (like Agent Orange) linked to PD.

The Macon-based Me Over PD Foundation publishes a free, three-times-a-week, emailed newsletter about Parkinson’s (Parkinson’s Pro-Activities). It reaches almost 1,700 people across North America.

Gil Thelen is President of the Macon-based Me Over PD Foundation. He can be reached at gthelen1@icloud.com or 813-787-3886. For more information about MDS-Macon, email MDS-Macon@MeOverPD.org and more information about PD Fit classes, email PDFit@MeOverPD.org.