For Betty Shapiro, the first symptom was small — a tremor in her left index finger.
But after she was diagnosed with Parkinson’s disease in December 2010, she took action in a big way to manage the condition.
Today, the 67-year-old Wyncote resident stays active with dancing, yoga, tai chi, and boxing — and enjoys singing with the ParkinSingers Choir. The group, which includes patients, friends, and families, performed last month at Congregation Rodeph Shalom in Philadelphia.
This active regimen has “improved my functionality in terms of my balance and stamina, and my ability to manage steep steps to get onto the train,” she said. “I feel better, and I’m happier.”
Experts fear that many Parkinson’s patients, perhaps especially women, aren’t getting the kind of support Shapiro enjoys. Yet they just don’t know enough about the needs of women with Parkinson’s, since research has focused mainly on men.
More men than women are diagnosed with the neurological condition, which primarily affects adults over age 60, according to the American Parkinson Disease Association. But women, some studies suggest, may have different symptoms and experiences.
“There is research showing that women may be older when they are diagnosed, more likely to have tremor, and may be more likely to have motor fluctuation, where medications wear off early, or they can have extra movements,” said Michelle Fullard, a neurologist and instructor at the University of Pennsylvania and part of a team studying women and Parkinson’s.
The leader of that team is Allison Willis, an assistant professor of neurology and epidemiology at Penn.
“Women haven’t been the focus of the [Parkinson’s] research, how they experience it, what their risk factors are, what their clinical progression is, and how they respond to medication,” she said. There are indications that women with Parkinson’s are more likely than men to also suffer from diabetes, stroke, arthritis, and other conditions that may or may not have anything to do with Parkinson’s, Willis said. Data specific to women are important for treatment, and to help shape policy and improve women’s access to additional support.
Shapiro, for example, finds that remaining active with the ParkinSingers and attending support groups helps her physically, emotionally, and socially. Boxing each week at classes and on her speed bag at home, for instance, allows her to “take my medicine less often,” said Shapiro.
But generally, women report a lower quality of life with Parkinson’s compared with men. Willis is working to find out why — and if that notion is even true. “Due to lack of research, we honestly do not know,” she said.
Her team also is looking into reports suggesting that women don’t get diagnosed as quickly as men. One issue, Willis said, is that in women, Parkinson’s symptoms may be dismissed as an emotional issue, such as anxiety.
Ask women with Parkinson’s about how the condition affects their lives most, and the variety of experiences they report reinforces the complexity of the researchers’ task.
Dianne Fisher, 66, was diagnosed with Parkinson’s about nine years ago, after suffering unusual falls, tremors, and losing her sense of smell.
“It’s affected my speech and processing,” the Mount Laurel resident said. Cooking, which she once enjoyed, now is difficult, but not due to any physical reasons. “The part of your brain that processes the step-by-step reading of the recipe, I can’t do.”
Still, like Shapiro, Fisher remains active — swimming, dance, and spinning to help with her balance.
Sylvia Canada, 69, who was diagnosed in 2008, finds it difficult to socialize, especially entertaining in her home, which she loved to do.
“I wake up in the morning tired,” said Canada, of Wyncote. She hopes new research will help her doctors better understand how to best treat her.
“Sometimes it’s hard for my doctors to gauge the right dosage of medication,” she said. “Sometimes I have a lot of shaking, and sometimes I don’t. If I get extremely happy or upset, or just emotional about something, I get tremors.”
Women tend to get deep brain stimulation, a surgery for Parkinson’s, less often than men, despite the fact that it helps motor fluctuations that medication doesn’t reach, said Rebecca Gilbert, vice president and chief scientific officer of the American Parkinson’s Disease Association.
Such fluctuations are “more common in women, yet there are fewer women getting the surgery,” she said. “The question is why. Is there a referral bias, or are women more reluctant to get surgery?”
Willis hopes her team’s research will produce recommendations that can be put into clinical use by next year.
“Before you change how a clinic works or how medications are prescribed, it’s important that you have data, that you are making appropriate, safe change,” Willis said.
In the meantime, she urges women diagnosed with Parkinson’s to see a neurologist and a movement disorder specialist to improve their outcomes — because it appears women are less likely to seek out specialized help. It can take a while to get an appointment, but she urges women not to let that discourage them.
Shapiro sees a movement disorder specialist at least twice a year. “That’s crucial, because you’re going to get the best care based on the most up-to-date research and most experience with patients with Parkinson’s,” she said. “He’ll examine me and see how I’m doing compared to my last appointment, adjust my medications if need be, and tell me what else I can do to ease my Parkinson’s symptoms.”