Michael Church started to notice a slight tremor in his left pinky in times of high stress when he reached his 30s.
The Naples resident was diagnosed with young-onset Parkinson’s disease on his 32nd birthday almost 20 years ago.
But the diagnosis led him to meet his wife and fellow Parkinson’s patient, Gretchen Church, and create an outlet to help those suffering from the disease called Movers & Shakers, a national nonprofit organization that supports people with Parkinson’s disease.
Now the couple receives treatment from Dr. Michael Okun at the UF Health Center for Movement Disorders and Neurorestoration.
Gretchen Church, also of Naples, said she felt like a walking Jell-O mold 17 years ago when she had trouble keeping up with her active daughter. After visiting a neurosurgeon, she was also diagnosed with young-onset Parkinson’s disease at 32.
Before they met, the Churches struggled to find information about their disease or support from others who had it.
The Churches connected in the early 2000s over an AOL message board for people who had young-onset Parkinson’s. Michael Church sent Gretchen an email asking for her help starting an online support group for people with the disease.
Gretchen Church said she initially didn’t want to respond to the email. She didn’t want to think about having Parkinson’s disease, let alone help start a support group for it.
But she eventually responded, and when asked to tell his story, Michael Church sent her the Naples Daily News article that featured his life as a single dad with Parkinson’s raising four children. She agreed.
Within three months of setting up the group, there were more than 350 members.
“I know there are people alive today because of that chat room,” Gretchen said.
They planned a young-onset Parkinson’s conference in Atlanta so those in the group could meet, and about 100 attended.
The Churches met in person for the first time during the planning process.
“That was the first time I had ever met anybody or seen anybody else with young-onset Parkinson’s, and little did I know it would be my future husband,” Gretchen Church said.
The online support group eventually grew into what is now Movers & Shakers.
“We wanted to get into people’s lives,” Gretchen Church said. “We wanted to be able to sit on their couch and hug them and talk to them and get out from behind the monitor.”
Their organization is now geared toward all people with Parkinson’s, but it still maintains the original goal of connecting people to the resources and support they need.
“There are a million and one reasons to get out of the bed in the morning and do something,” Michael Church said, “but only one reason to stay in bed — to feel sorry for yourself.”
[A version of this story ran on page 4 on 4/20/2015]
Gretchen Church (left), and Michael Church, both diagnosed with Parkinson’s disease at 32, pose for a photo. The Churches met through an online support group they started for people with Parkinson’s disease, which has grown into a non-profit called Movers and Shakers.
