Editor’s note: This column was written for a general audience. The COVID-19 pandemic has pushed this remarkable book out of consideration at mainstream news outlets. Please tout it to your PD colleagues.
The odds of a person developing Parkinson’s disease over a lifetime are 1 in 15.
It is the fastest growing neurodegenerative disease and is overtaking Alzheimer’s for the top spot.
That stunning growth curve foreshadows bankruptcy for many health-care systems, said Dr. Michael S. Okun of University of Florida health, a leading international expert on Parkinson’s. He is one of four authors of the authoritative new book “Ending Parkinson’s: A Prescription for Change.”
That bleak future can be brightened if the Parkinson’s community organizes and forces changes like those in successful campaigns against polio, HIV and breast cancer.
“We need to stand up and make noise,” Okun said. “Parkinson’s sufferers, their families and the professional care community must be as charismatic and disruptive as we can be.”
Agitation and disruption are not words commonly associated with PD. The disease itself often produces passivity, depression and apathy.
Parkinson’s is the second most common neurodegenerative disease after Alzheimer’s, which it is fast overtaking with an estimated 6,000,000 cases worldwide today.
PD is especially baffling because no two cases are the same. The malady is difficult to diagnose and demands individualized treatment plans for optimum care. (Optimum care is difficult even now due to a shrinking supply of neurologists trained specifically to treat Parkinson’s.)
Parkinson’s stems from death of nerve cells in the midbrain that produce dopamine and from deposition of an abnormal protein called alpha-synuclein in many brain regions.
Dopamine 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 Okun. (Okun is Executive Director of the Norman Fixel Institute for Neurological Diseases at UF Health.)
“In addition, certain genetic mutations, head trauma, and the lack of regular exercise increase risk,” the authors write. “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.”
The book’s “Prescription for Action” is this: “We must form a PACT to end Parkinson’s. This PACT will Prevent the disease, Advocate for policies and resources, Care for all affected and Treat the condition with new and more effective therapies.”
Current federal research funding for Parkinson’s is about $300 million and must increase 10-fold, said Okun.
“Ending Parkinson’s Disease” (Public Affairs, Hachette, 2020) is a stunning and important work deserving urgent attention from Parkinson’s fighters, their families and health-care policymakers.