NAPLES — Naples residents Michael Church and Gretchen Garie-Church are a couple who refer to themselves as movers and shakers, both literally and figuratively.
They’ve even set up a nonprofit organization with just that name _ Movers & Shakers Inc.
Gretchen, 43, and Michael, 46, each have young-onset Parkinson’s disease, but that hasn’t stopped them from living their lives to the fullest and providing a voice for the more than one million Americans afflicted with the disease.
“We have Parkinson’s, but Parkinson’s doesn’t have us,” Gretchen Church said of the chronic, progressive neurological disease, which is caused by the loss of dopamine-producing brain cells. “We certainly move, and we certainly shake. So we might as well do it for some good.”
That’s why the Parkinson’s Action Network — a Washington, D.C.-based, national nonprofit that is dedicated to advocating for the Parkinson’s disease community — awarded the couple in February with the Louis B. Fishman Award for outstanding advocacy.
“We are very humbled and honored,” said Gretchen, who is a Parkinson’s Action Network state coordinator in Florida with her husband. “We’ve never done anything that we do as far as Parkinson’s for our own personal gain, but as everybody knows, it’s nice to get a pat on the back.”
The annual award was established in 1996 and honors Parkinson’s Action Network (PAN) congressional or state coordinators, like the Churches, who have exhibited exemplary Parkinson’s disease advocacy efforts at the local level.
The PAN staff members decide who will win the award each year.
“They’re some of the most interesting people I know,” said Hayley Carpenter, director of outreach at PAN. “As far as being advocates, they’re really innovative in their thinking. They don’t ever back down.”
Carpenter, who has known the Churches for more than three years, admires their ability to continuously find new places in the community to reach out to while creating awareness and support for issues concerning Parkinson’s disease.
“They just always come with this really uplifting story,” she said. “They show that they can laugh through anything.”
Forrest Head, a senior associate pastor at First Baptist Church of Naples, who has known the couple for about seven years, is proud of them for winning the award.
“They’re very focused on making sure a voice is heard when it concerns Parkinson’s disease,” said Head, who married the couple three years ago. “Michael and Gretchen, they’re both go-getters. They try not to let that disease hinder them in any way possible.”
Each year, in the span of a day, the Churches meet with every member of Florida’s Congress to make sure the representatives are aware of the policy issues and needs of people who have Parkinson’s disease.
“We believe that it’s vital for us to be our own cheerleaders and advocates,” she said. “We go up to Washington, (D.C.), at least once a year and meet with our Congressional leaders up there along with 300 or 400 people from around the world, and literally we shake up Washington.”
The couple, who are self-proclaimed political junkies, have been volunteering with PAN since 2003. As state coordinators, they work with the advocacy network and community outreach efforts in Florida, give feedback and information to PAN staff in Washington, D.C., and work to ensure a seamless message across the nation.
“We also understand that through advocacy of our own disease and through benefiting others, we are helping ourselves,” Michael Church said. “That’s a crucial part of treatment as far as I’m concerned.”
The Churches co-authored a book, “Living Well With Parkinson’s Disease: What Your Doctor Doesn’t Tell You … That You’ll Need to Know,” which was released in 2007.
They collaborated with about 25 friends to come up with ideas to include in the book, which they consider to be a Parkinson’s Bible.
In 2003, they founded Movers & Shakers Inc., a national nonprofit support and advocacy organization for people with young-onset Parkinson’s disease.
“It lets people know that their situation isn’t unique _ that they’re not alone out there and that they can share with confidence that others understand what they’re going through,” Michael Church said.
In cooperation with other local and national organizations, Movers and Shakers reaches out to the young-onset Parkinson’s community to provide support, education and awareness, not only to the person living with the disease and their families, but to their communities, medical practitioners and legislators.
“I think that they do a wonderful job of spreading the advocacy and helping to encourage people (with Parkinson’s disease) to advocate for themselves,” said Jeanne Csuy, program coordinator at the Hope Parkinson Program — the only Parkinson support program in Lee County. “They do that a lot just by their own lifestyle and by willingly going wherever they can to spread the news about trying to get different laws enacted to get the senators and representatives to pay more attention to this chronic disease.”
The Churches have undergone bi-lateral Deep Brain Stimulation surgery to improve the quality of their everyday lives by helping them cope with the physical symptoms of Parkinson’s disease.
The four primary motor symptoms of Parkinson’s disease are tremor, or trembling in hands, arms, legs, jaw, and face; rigidity, or stiffness of the limbs and trunk; Bradykinesia, or slowness of movement; and postural instability, or impaired balance and coordination.
“The difference is night and day,” she said of the before-and-after difference the surgery has made. “If you look at Michael J. Fox or Muhammad Ali, that’s the way we were.”
Now, they can button buttons, tie ties, hold drink glasses without spilling the contents and do other everyday activities that they struggled with before their surgeries.
“It has given us a life back and some quality to our life and some dignity to our life,” Gretchen said of the surgery. Between the two of them, they have a total of five children, ranging in age from 16 to 26, from previous marriages. They have two grandchildren too.
“The greatest thing is being able to spend more time with our kids and watching my husband throw a ball around with our son,” she said of their post-surgery lives. “That has just been absolutely phenomenal. Our quality of life is so much better.”
The Churches maintain a certain level of humor about their disease.
“If you can’t laugh at yourself, then this disease is going to put you in an early grave,” he said.
They also share the unique relationship of being both patient and caregiver and try to keep each other motivated.
They have agreed not be the patient on the same day; they only allow each other 15-minute pity parties before one is allowed to “pop the other’s balloons.”
He was diagnosed with Parkinson’s 15 years ago, and she was diagnosed 10 years ago. According to PAN’s Web site, roughly 60,000 people are diagnosed with Parkinson’s each year in the U.S.
The average age of diagnosis for Parkinson’s disease is 60, but people as young as 18 have been diagnosed. Typically, anyone younger than 50 who is diagnosed with the disease is considered as having young-onset Parkinson’s disease.
When they were diagnosed with the disease, each was married to another person and had children, careers and mortgage payments to worry about. Although their disease wasn’t the only deciding factor, they both feel it contributed to the demise of their previous marriages.
“We had jobs that were careers … but because of the progression of our disease, it made it impossible for us to continue to work,” Gretchen said of the strain that Parkinson’s put on her life.
The cause of Parkinson’s disease — which currently has no cure — remains unknown, but scientists and researchers believe both genetic and environmental factors contribute.
“The genetics loads the gun, and the environment pulls the trigger,” Gretchen said.
She doesn’t expect to see a cure for the disease in her lifetime, but if scientists can find a cure in her children’s lifetime, she will be satisfied.
“That’s why we do what we do,” she said. “It may not be for us, but it’s for someone else.”