New play is a journey through Parkinson’s
Parkinson’s awareness live theater comes to the Sebastopol Community Cultural Center on Sunday, April 13
When life coach and health care consultant Mary Radu and her husband (who wishes to remain anonymous) moved to Sebastopol in April 2009, their elation at having found the property of their dreams dampened following his diagnosis of Parkinson’s disease (PD). In the ensuing months and years, the couple made contacts that enabled them to negotiate the difficulties associated with PD by engaging with the Parkinson’s Support Group of Sonoma County (PSGSC). In large part due to the support they received, Radu’s husband still remains “very active” and even drives the tractor on their farm despite the advancement of his disease.
“The Parkinson’s journey takes support from an entire community of friends, neighbors, health care professionals,” said Radu, who, with years of professional experience working with boards and nonprofits, now serves as a volunteer adviser to the PSGSC board of directors.
Radu’s husband is one of an estimated 5,000 residents in Sonoma County with Parkinson’s. Nationwide approximately 1 million people — or one out of every 336 — have Parkinson’s, according to the Parkinson’s Foundation. There are five stages to the disease, which has no known cause but can be inherited, and is defined as an age-related degenerative brain condition. They range from initial mild symptoms such as tremor on one side of the body or changes in posture, walking and facial expressions that don’t necessarily interfere with daily activities, to debilitating symptoms such as leg stiffness that may prevent standing or walking, or being bedridden or confined to a wheelchair unless aided, which may necessitate 24/7 care. Each PD journey is unique and demanding for both patients and caregivers. But the journey can also be rewarding.
Early on Radu met a woman whose husband also had Parkinson’s who told her, “you will learn more about Parkinson’s from the patients and their families than you will from the doctors.” This prompted Radu to seek out the PSGSC, where she found necessary support through attending regular meetings and in turn meeting, and learning from and befriending the community.
Nonprofit PSGSC provides numerous services, including monthly in-person/online meetings — with speakers — for patients and care partners; smaller support groups; Parkinsonian Voice and Communication classes; and fitness, stretching and dance classes. In addition, it publishes a free monthly newsletter.
And per its core commitments to “providing an environment of support, comfort and encouragement to those with Parkinson's and their caregivers; informing the public about PD; and promoting activities that benefit the Parkinson’s community,” it will host a live play called “What I Didn’t Say: A Journey Through Parkinson’s” at 3 p.m. on Sunday, April 13, in the Sebastopol Community Cultural Center’s Main Hall at 390 Morris St.
Thespian/writer/teacher Matthew Moore wrote the highly acclaimed play after receiving an early-onset PD diagnosis. He and Krista Stauffer act out the 50-minute drama, which portrays “the roller-coaster life of a Parkinson’s patient. Paul, the PD patient, and his wife, Marty, must try to navigate the occasional highs and the crushing lows of a neurodegenerative disease that never relents,” according to Moore’s website, Lamp & Light Productions. The theatrical piece will be followed by 20 minutes of Q&A. Tickets are available online for a donation of $20 each (see link below for more information).
Suzanne Ferroggiaro, who serves as volunteer secretary to the PSGSC board and whose husband also has PD, said the play “is an excellent way to learn about Parkinson’s, whether you have it or whether you are a care partner, or whether you’re a friend or a family member with somebody with Parkinson’s, and also [for] medical personnel that deal with Parkinson’s patients.”
Radu and Ferroggiaro both believe deeply in PSGSC’s mission and describe their volunteer work with the board as a means by which they can each repay the community for the help, support, guidance and friendships they and their partners have received and made. They believe the need for PD awareness remains high and hope the upcoming 300-seat event sells out. This seems likely, as 200-plus tickets had sold by the time this article went to press.
“Both my husband and I have the same philosophy about life: When you have something, it’s important to share it. There’s so much need in the world. It’s important that each of us finds a way to share the treasures, the skills, the knowledge that we have,” Radu said.
“We don’t want anybody to have to go through this disease alone,” she added.
“It’s extremely enriching to be part of this group,” Ferroggiaro said. “Even though it’s a very difficult disease because no two cases are alike, there is a lot of community in our commonality.”
Learn more and purchase tickets online here. See a preview of the play at vimeo.com/788772753.
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