Parkinson's Sufferers Find Support, Community in Group

U.S. Senate Resolution 416 just declared April as Parkinson’s Awareness Month.

But the “Movers and Shakers,” a weekly Parkinson’s support and exercise group at the Petaluma Senior Center, have been spreading the word about Parkinson’s since 2004, sharing everything from caregiver recommendations to studies on the latest medications.

Eleanor Friedrichsen, 80, calls it a safe place to share and learn from each other as well as give their brains a workout through group memory games and movement.

“Here, we can shake and twitch, and we don’t have to be embarrassed and we don’t have to explain,” says Judy Geri, who was diagnosed with Parkinson’s in 1999 after a bout with cancer.

Exercising both the mind and body are essential when living with Parkinson's, one of the most common neurodegenerative diseases in the United States which affects nearly than 1 million people and is second only to Alzheimer's, according to the National Parkinson Foundation.

Symptoms vary, but can include tremors, difficulty with balance and speaking, rigidity, cognitive problems, dementia and sleep disruptions.        

But its causes are still not well understood, including by many in the medical field. Geri remembers when a stranger asked what was wrong with her and then suggested she wear flashier earrings so people could look at them instead of watch her wiggle.

“Here, if we drop our food or drool, we just laugh because we all do it,” she says.

Currently, there is no therapy or drug to stop its progression, although the recently signed Senate resolution supports research toward better treatment and eventual cure.

Ann Clark, 70, is one of about a dozen participants, including spouses, who show up weekly for camaraderie and emotional support. She says this group “isn’t morose like some where people talk about their suffering and leave in terrible moods.”

Living with Parkinson’s for at least fifteen years, she says having a positive attitude keeps her going.

“This is a serious disease and I don’t mean to make light of it, but there are worse things,” she says. “And there are a zillion things to smile about all the time.”

Although most people in the group are seniors, the disease “doesn’t confine itself to old people,” according to Robert Melone, 62, of Novato.

“Up until I was diagnosed two years ago, I was pretty sporty,” he says, recalling the three times he finished the Ironman Triathlon.

Now he joins in as everyone marches around the room to recorded music, plays maracas, and mirrors one another’s movements in pairs, often joking and laughing together.

“Music is magical for anyone. Not only is it fun, it touches us on an emotional level. It brings back memories,” says Diana Scranton, an Adapted Physical Education instructor at College of Marin and a Dance for Parkinson’s instructor.

Every second Friday Scranton facilitates seated and standing dance movements and trains the group in Qi Gong, which improves balance. At age 65, she’s in great physical shape herself.

“I try not to lead specific movements because I want to see how their bodies express the rhythm,” she says.

For Qi Gong, Scranton matches conscious breathing with animal-like postures: a deer with antlers, a tiger’s roar with claw hands, or a crane with outstretched arms. People who ordinarily feel stiff or have a hard time moving respond well to it.

“That’s become more fun than I ever imagined,” she says. “It’s taken on a life of its own.”

The Parkinson’s Support Group and Exercise Program meets Fridays, 1-3 PM at the Petaluma Senior Center located in Lucchesi Park, 211 Novak Drive in Petaluma.

For information, contact coordinator Lance Cerny at 707-765-1117.