Caring for the Most Vulnerable Parkinson’s Population: Women
by Veronica Todaro, MPH, Executive Vice President, Parkinson’s Foundation
Nearly one million Americans are living with Parkinson’s disease (PD), that is more than the combined number of people diagnosed with multiple sclerosis, muscular dystrophy and Lou Gehrig's disease. One group that is the most vulnerable population within the Parkinson’s community is women. Studies indicate that women diagnosed with PD report different symptoms, more often report side effects and changes in their symptoms throughout the day and receive lower-quality healthcare than men.
Researchers are also discovering that women with Parkinson’s are uniquely vulnerable when it comes to care and support. Women with PD are more likely to have overwhelmed care partners, require outside, paid caregiving and receive less social support. Those diagnosed with the disease can encounter greater hurdles in obtaining an accurate diagnosis, experience more non-motor symptoms, face greater treatment-related dyskinesias and may be less likely to see medical specialists than men with PD.
“We know that people with Parkinson’s are physically, psychologically and socially vulnerable,” said Allison Willis, MD, a movement disorder specialist at the University of Pennsylvania Movement Disorder Center, a Parkinson’s Foundation Center of Excellence.
Dr. Willis is one of the few researchers to conduct Parkinson’s research about women using a wide range of data. One of her primary sources is the Parkinson’s Foundation Parkinson’s Outcomes Project, the largest clinical study of PD that tracks more than 12,000 people with Parkinson’s.
In general, women have an overall lower risk of being diagnosed with Parkinson’s than men. Researchers believe this could be due to the natural protection that estrogen provides in the brain or by another hormone not yet known. However, the total number of women living with PD is not far behind that of men, because, on average, women live longer.
Women also have side effects from their Parkinson’s medications that can cause big changes in their symptoms, the most common being dyskinesias (involuntary, erratic, writhing movements). Additionally, despite having greater reported improvements than men, women are less likely to receive deep brain stimulation to treat their Parkinson’s.
“I have a long list of symptoms, but freezing gait interferes with my life the most,” said Debbie Flamini, 53, diagnosed with early onset Parkinson’s eight years ago. “Medications help, but then there's the dyskinesia. If you were to meet me you would notice the dyskinesia, but you would also think I look pretty good. As all of us with Parkinson's know, it's what you don't see that sometimes is the most challenging.”
In order to better help women with Parkinson’s have a better quality of life, like Debbie, the Parkinson’s Foundation announced the first patient-centered research agenda for women living with Parkinson’s. The agenda is based on the data from 11 forums held across the nation where women with Parkinson’s and healthcare professionals gathered to recommend priorities on research and care. Through this collaboration, the Parkinson’s Foundation has developed comprehensive priorities that provide an opportunity to change how Parkinson’s is studied and treated in women.
In addition to developing and promoting a research agenda targeting the needs and priorities of women with PD, the Foundation recently unveiled local education programs throughout the country to reach and empower more women with Parkinson’s to advocate for their own care. This focus on care, research and empowerment are core to the Foundation’s mission of creating better lives, together.
Learn more about how the Parkinson’s Foundation is addressing the needs of women living with PD at www.parkinson.org/WomenandPD.