by Deirdre Bannon
Current Newspapers correspondent
Reprinted, with permission, from the March 11th edition of the Northwest Current. Download the paper here.
When winter weather hits the District, it often reveals two kinds of people: Those who huddle inside to wait until it passes, or those who venture outside to explore the frozen landscape. Patricia Davies is one of the adventurers.
During the ice storm on March 1st, instead of sitting by the fire in her comfortable Forest Hills home with her Yorkshire terrier Patrick and her calico cat Sophie, Davies ventured out with camera in hand to photograph the nearby flora and fauna encased in ice.
“It was all so photogenic, but it was disappearing so fast,” she said.
Davies posted a few photos on her neighborhood website, Forest Hills Connection. One commenter wrote, “Leave it to you, Pat, to find beauty everywhere, even that annoying ice storm!”
Davies also sees opportunity in other types of challenging situations. She was diagnosed with Parkinson’s disease in 2009. That was two years after she retired from the World Bank and International Monetary Fund, where she managed and planned the annual board of governors and ministerial-level meetings – a job that took her to many countries during her 16-year tenure.
Davies, who grew up in England but has lived in Northwest D.C. since 1991, felt the early signs of the disease when she was still working, but at the time she didn’t know what it could be.
“I knew something was wrong. I sometimes felt cognitively impaired – my brain was fuzzy and I couldn’t quite connect my thoughts,” she recalled.
After she retired, the symptoms continued, but at first her doctor dismissed them, saying she was probably just adjusting to not working anymore. But it got harder for Davies and her friends to ignore.
Little issues became more apparent, like the one arm that remained stationary when she walked. That quirk grew to the point where she would sometimes involuntarily hold her hand like a claw. And when she was grocery shopping, she found it hard to coordinate putting items in her basket or change in her wallet. Then she had difficulty writing.
Her friends wondered if perhaps she’d had a mild stroke. Davies did what many people do with their medical symptoms: She Googled them. One of the possibilities was Parkinson’s. She went back to her doctor and, after seeing a neurologist who ruled out other possible illnesses, got the official diagnosis.
As many as one million Americans live with Parkinson’s disease, more than the combined number of people diagnosed with multiple sclerosis, muscular dystrophy and Lou Gehrig’s disease, according to the Parkinson’s Disease Foundation in New York. Approximately 60,000 Americans are diagnosed with Parkinson’s each year, and that doesn’t include the estimated thousands of cases that go undetected, the organization said. The average age of onset is 60, and there is no cure.
Davies takes medication every four hours to control her symptoms. but she hasn’t let the disease slow her down. At 67, she’s become a fierce advocate for Parkinson’s patients, and she also holds leadership positions at several local nonprofits dedicated to other causes.
“I want to take on as much as I possibly can while I can,” she said. “I feel like the clock is running out. I don’t know how much longer I’ll be able to do things.”
[quote_right]“I’m not glad I got Parkinson’s… But I have met some amazing, inspirational people, and it has forced me to do more than I otherwise would have done.”[/quote_right]While Davies is considered a high-functioning patient, she knows that might not always be the case. She’s beginning to develop involuntary movements, called dyskinesia – typically a side effect of the medication and sometimes associated with actor Michael J. Fox, who developed Parkinson’s at age 30 and went on to become a strong advocate for research. Her speech is softer than it once was, and sometimes her words are slightly slurred.
“Keeping active is my way of dealing with it,” she said. “I don’t sit at home and think, ‘Oh no, I have Parkinson’s.’ I do talk about it; I tell new people I meet fairly quickly. I think it’s part of my responsibility to educate people on Parkinson’s. It’s good to tell people you can be active and live positively with Parkinson’s, but I know that as the disease progresses, it’s not so easy.”
Davies’ roster of commitments is dizzying. She’s a research advocate for the Parkinson’s Disease Foundation and secretary of the board of the World Parkinson Coalition in New York. She serves on two committees for the World Parkinson Congress. She’s also a member of a support group run by the Parkinson Foundation of the National Capital Area.
And currently Davies is working to develop a wearable medication reminder, something akin to the Fitbit that would vibrate to discreetly remind patients when it’s time for medication. With apps, you have to have your phone on you and hear it, Davies said, and she doesn’t like the obvious-looking alert devices worn around the neck.
“This would be simple, functional, cheap, and it would vibrate when you need to take a pill – and it could double as a medical alert bracelet,” she said.
But Parkinson’s work is only part of Davies’ life. She’s also president of the board at the Georgetown Ministry Center, a nonprofit that serves the chronically homeless, and she works with a group that coordinates dinners for the homeless at Mount Zion United Methodist Church and Georgetown Presbyterian Church. She recently became an elder at the latter. She’s also a member of the Van Ness Vision Committee, created by the Forest Hills advisory neighborhood commission to improve the area.
“I like all of my Parkinson’s disease activities, but then I can feel that I want to get out and do something else,” Davies said. “When I’m doing photography and other activities that have nothing to do with Parkinson’s, I can sometimes forget I have it.”
But Davies isn’t a Pollyanna about her disease.
“I’m not glad I got Parkinson’s,” Davies said. “But I have met some amazing, inspirational people, and it has forced me to do more than I otherwise would have done.”
When she was first diagnosed, she decided to adopt a small dog, which would force her to walk regularly, as exercise is an important part of managing Parkinson’s. Her application for a one-year-old dog was rejected: Because of her disease she was not considered a “good long-term prospect,” which bothered Davies because she knew she was perfectly capable of caring for a pet.
She eventually got matched with an older dog, her beloved Patrick, which she now says was meant to be anyway. She even made a short film about how Patrick and Sophie rescued her, not the other way around, and it received an honorable mention in the World Parkinson Congress’ competition to raise awareness of the disease.
In her role as an advocate for the Parkinson’s Disease Foundation, she trained to work with researchers developing treatments for Parkinson’s to make sure the patient’s perspective is part of the process. On the flip side, Davies also encourages patients to participate in trials so the disease can be better understood.
“Pat is a consummate professional,” said Ronnie Todaro, vice president of national programs for the Parkinson’s Disease Foundation. “She’s articulate, intelligent, passionate and compassionate – those personality traits make her shine.”
“She’s always thinking creatively,” added foundation spokesperson Melissa Barry.
For the organization’s “caregiver month,” Davies, who lives alone and has no family, asked, “What about people who don’t have caregivers?” She has written several articles to help support people like her who might need ideas for resources and safety nets.
“She’s proactive that way,” Barry said.
She has also channeled her artistic side. Recently one of Davies’ photographs was selected from more than 400 to be in the foundation’s “Creativity and Parkinson’s” 2015 calendar. The image is from a trip she took to Vietnam, showing two women artisans selling handmade tapestries on the roadside of a rural village north of Hanoi.
Davies continually encourages others to remain engaged in activities, rather than staying home and feeling sorry for themselves.
“You have to fight it – maybe they will find a cure or better medicine,” she said. “If you keep positive, you can live positively with Parkinson’s.”