Impacted by Parkinson’s Disease, Three Couples Plan to Leave a Lasting Legacy to Support Research
(April 26, 2019) — When someone is diagnosed with an incurable, life-changing disease like Parkinson’s, they usually have many questions about how it will affect their life and what can be done to manage it. Unfortunately, many people who have Parkinson’s symptoms don’t get those answers until they are fortunate enough to see a doctor who specializes in treating the disease, like those at Georgetown’s Movement Disorders Clinic.
To show their appreciation for the care they have received at Georgetown’s movement disorders clinic, three couples — Rick and Donna Schena, Joyce and Bob Peavey, and Pam and Phil Cota — have created generous bequests to support Parkinson’s research and help train new movement disorders specialists through the Fund a Fellow for Parkinson’s disease research program. The Schenas and the Peaveys will leave bequests of $1 million while the Cotas plan to leave 50 percent of their estate.
“I look at this thing and say, it’s the biggest bang for the buck out there,” Rick Schena says. “I can’t think of a better place to put my money.”
Schena is also one of the co-founders of Georgetown’s Fund a Fellow program, which provides funding to train early-career physicians to become movement disorder specialists. Since its creation in 2013, the program’s donors have given more than $1.5 million and funded an additional 15 fellows, twice the number that would have been trained otherwise. Led by Fernando Pagan, MD, director of the clinic at MedStar Georgetown University Hospital and medical director of Georgetown University Medical Center’s Translational Neurotherapeutics Program, the fellowship program has graduated a total of 27 movement disorders specialists who practice around the country, helping patients who previously didn’t have access to a specialist.
Pagan and Charbel Moussa, MBBS, PhD, director of the GUMC Laboratory for Dementia and Parkinsonism, also collaborate to design and implement clinical trials to test new drugs to treat Parkinson’s disease — many translated from the Translational Neurotherapeutics Program into patient research.
“The Fund a Fellow program and Parkinson’s research at Georgetown are the best investments patients and families can make, because we are investing in the future of medical care,” Pagan says. “Education, research and clinical care improve yearly because of the fellowship and training of new young neurologists.”
Movement Disorder Specialists Provide Hope
Schena says the difference between seeing a general neurologist and a specialist “was day and night.” A former military and airline pilot, Schena visited a general neurologist when he started having some suspicious symptoms about 10 years ago. While the doctor didn’t give him a diagnosis or much information, he suggested that Schena might have Parkinson’s disease and told him to stop flying right away.
“I had no idea what my future looked like — it was pretty unnerving,” Schena says. “I went in one day from being a senior captain flying jumbo jets around the world — it was my passion from since I was a little boy — to suddenly having it disappear.” Then a friend referred him to the movement disorder clinic, and he got an appointment with Pagan.
“Dr. Pagan’s whole approach is very respectful and caring,” Schena says. “He started off saying ‘Look, we’re going to make your life better.’ ”
Seeing him was also much more reassuring, because his knowledge of the disease, its treatments and current research meant he could give them answers, says Donna Schena, who later became board chair of the Parkinson Foundation of the National Capital Area. “We walked out of there so hopeful,” she says. “Dr. Pagan said he could help us, and that it wasn’t a death sentence.”
Seeing Parkinson’s Again After 60 Years Creates an Appreciation for Research Gains
Sixty years ago, Bob Peavey’s athletic father was diagnosed with Parkinson’s disease when he was just in his late 30s. While his father was one of the first patients to be treated with the first L-dopa drug for Parkinson’s, his disease was not well controlled. Peavey watched him decline and eventually die from it. So when his wife, Joyce, a retired Air Force lieutenant colonel, was diagnosed with Parkinson’s disease six years ago, he found himself to be “an observer of Parkinson’s again.”
However, a lot has changed for Parkinson’s disease patients since Peavey’s father was diagnosed. Joyce’s medications manage her symptoms so well that they travel cross-country much of the year, and most people have no idea she has the disease, he says.
That wasn’t always the case. The first neurologist Joyce Peavey had seen prescribed medication that left her so sleepy she would doze off while eating, making it difficult for her to continue working as a nurse, she said. Then she found Pagan.
“The Georgetown movement disorders clinic has created an environment where patients are treated kindly, respectfully and knowledgeably, not as a number or as research objects,” says Bob Peavey, a retired Air Force colonel. “That’s how they treat all their patients. We felt that was so remarkable and worthy, and that’s why we decided we were going to give $1 million to the program.”
Joyce Peavey says she hopes their gift will help researchers develop a way to diagnose patients more quickly, cutting down on the uncertainty and time it takes to receive a diagnosis, which currently is done by giving a patient many tests to eliminate other diseases as a possible cause. “Parkinson’s is being diagnosed with symptoms, the same way has been for years,” she says. “We really need some way of diagnosing it earlier,” which will also help improve its treatment.
Staying Upbeat, Grateful and Finding a Way to Give Back
Pam Cota worked all her life, primarily as an actress and singer. While still fit and active, Cota had ignored tremors in her hand for years, until one night, she fell and found she had lost the ability to walk. She spent two months in a rehabilitation center, with still no idea what was causing her symptoms. Then a doctor referred Cota to the Georgetown movement disorders clinic. When she saw Pagan, she finally received a diagnosis. “Dr. Pagan managed to nail it,” Cota says. Four years later, she is again living an active life due to his “excellent care.”
After carefully saving for their retirement, Pam and Phil Cota donated to the Fund a Fellow program. Since then, they decided to donate half of their estate to fund the research and treatment of Parkinson’s disease at Georgetown University Medical Center.
“It’s important to help others,” Cota said. “I’m grateful for all the people who have helped me along the way.” She stays upbeat by focusing on what she can do, not what she can’t, she says, and she believes in the researchers studying the disease. “In the end, there will be a cure.”