Matthew B. Stern, MD, and Governor Edward G. Rendell
Earlier this week, former Pennsylvania Governor Edward G. Rendell announced that he’s living with Parkinson’s disease. Along with leading edge research and advancements in therapies for Parkinson’s patients, Rendell’s decision to make his diagnosis public is helping to shine a light on what a Parkinson’s diagnosis really means.
Roughly 1 million people are living with Parkinson’s disease in the United States, making it the second most common neurodegenerative disease. However, despite its prevalence, misconceptions about the disease persist. For example, while there are genetic forms of Parkinson’s, most patients do not actually carry one of the genes, showing that other factors are at play. Additionally, many assume that Parkinson’s is only a movement disorder. The truth is that other non-motor symptoms are common, such as sleep disorders, depression, bladder symptoms, fatigue, and limb pain. The good news is that many of these symptoms are treatable.
Matthew B. Stern, MD, director emeritus of the Parkinson's Disease and Movement Disorders Center at Pennsylvania Hospital, says he spends the majority of appointments with newly diagnosed patients myth-busting. Most patients, he says, come in depressed, with the assumption that this disease will disable them in a finite period of time. Stern assures patients that with today’s treatment options, many patients can live full, active lives for many years and that great strides have been achieved at reducing long-term disability.
“Many patients worry that their life is over, and the truth is that it’s not,” said Stern. “With a personalized, comprehensive treatment approach, involving a mix of medications, exercise, and other ancillary health services, patients can continue living their lives.”
Three years ago, the Governor came to Penn Medicine with some troubling symptoms including a tremor, and soon learned he indeed had Parkinson’s disease. While he was not ready to share his story then, this week, he came forward in hopes of inspiring others to see a doctor with early a signs of the disease, have a better understanding of Parkinson’s, and find hope in current treatments and future breakthroughs.
The Governor is an inspiring example of the reality of Parkinson’s. With help from his medical team at Pennsylvania Hospital, his physician therapists at Good Shepherd Penn Partners, and his personal trainer, he continues to manage his symptoms while sticking to a rigorous schedule he has followed for years, dating back to his tenure as Governor and Philadelphia mayor.
“For most patients, the problems are generally much worse in anticipation than reality. It’s not to say that this isn’t a potentially disabling disease, but it’s a very heterogeneous one with variability in signs, symptoms, severity, and rate of progression. For example, Parkinson’s is often characterized by tremors, but about one third of patients never develop tremors,” Stern explains, adding that “at the end of the day, we’re looking to provide hope and an individual treatment plan for each patient that is designed for their needs. I have patients, who over the 10 or 15 years I’ve treated them, are still functioning at a very high level with no significant limitations in their daily activities and lives.”
A major element of the program that Rendell points to for improving his symptoms involves a simple pair of gloves – the former Governor boxes his way through treatment. Maintaining mobility with the help of boxing and gait therapy are just two ways Parkinson’s symptoms can be alleviated. As the Governor demonstrates in the video below, there is inspiration in his story and an optimistic path forward for Parkinson’s patients.
Further inspiration comes in the form of research and future advances for Parkinson’s. For example, Alice Chen-Plotkin, MD, and her group are advancing the field by exploring precision medicine for Parkinson’s disease, looking at how to tailor therapies for individual patients based on their genes. That work and other initiatives at Chester County Hospital were profiled on our blog last month. In the surgery realm, a team lead by D. Kacy Cullen, PhD, is at work creating the first implantable tissue-engineered brain pathways in an attempt to “turn back the clock” on the progression of neurodegenerative diseases.
Research like this is crucial for Parkinson’s disease—providing fresh hope to patients like Governor Rendell. You can read more about his announcement in The Philadelphia Inquirer and Associated Press.