Sep. 27, 2013 at 2:28 PM ET
Kent Maurer is a guy who likes a party, and pizza, and as one with Parkinson’s disease, he joined thousands of others who gathered nationwide to watch the two-hour season premiere of “The Michael J. Fox Show.”
In the new sitcom, Fox plays Michael Henry, a New York City television news anchor who left his job after a diagnosis of Parkinson’s, but then goes back to work, to the relief of his wife and three kids.
Maurer, 56, watched happily from the Cleveland Clinic Wednesday night. He had to quit his job as a heating and cooling service technician because his fine motor skills were affected by the disease, a chronic neurodegenerative condition marked by shaking, stiffness, and cognitive impairments.
“I always thought it was an old person’s problem, and I was only 50 years old,” says Maurer, 56, from Avon Lake, Ohio.
Maurer gets inspiration to keep fighting and be active from his fellow patients, doctors, and people like Fox, “who realize that all of us are more than just our disease,” he says. “We have something to give. For Michael maybe it’s humor and his foundation work, and me, well I still know how to fix things and I’m still pretty good at it.”
About 2,300 similar viewing and pizza parties were held across the U.S. and Canada at the urging of The Michael J. Fox Foundation for Parkinson’s Research. “It’s a great, galvanizing event,” says foundation CEO, Dr. Todd Sherer. “At the highest level (the show) is an opportunity to bring Parkinson’s disease into the national conversation, and for people to become aware of some of the challenges.”
Barb Schaefer, who watched the show along with Maurer and some 40 others, couldn’t stop smiling. “Sometimes I stumble, sometimes my hand shakes when I’m cooking and sometimes it’s all very annoying and sometimes it’s just funny,” says Schaefer, 68, of Mayfield Heights, Ohio.
She was diagnosed in March 2010 at 65 shortly after retiring from her job designing courses for accountants. “All of us here tonight sometimes struggle, but when we watch (Michael) we can’t help but smile because we can all relate,” she says. “To know that you are not alone is very important for people who have this disease.”
It was a particularly good party because some Parkinson’s patients can feel isolated. “All of a sudden, some people may have to leave their jobs after a diagnosis, depending on the kind of work they do, and they lose not only income, but also that interaction with other people that work bring,” says Cleveland Clinic neurological researcher, Dr. Jay Alberts. Many of the patients at the clinic’s viewing party take part in a long-term research project led by Alberts examining the role of “forced exercise,” specifically cycling, on Parkinson’s symptoms.
Maurer, who no longer goes out on service calls to fix broken air conditioners and furnaces, does get to the Cleveland Clinic several times a week to participate in the study. “Sure, I miss going to work every day, but I stay busy with exercise,” he says. There’s also been an added benefit: “Just look here tonight at all the new friends who are here to watch the show. This is a lot of fun.”
Doctors who treat the disease want people to know that Parkinson’s affects everyone differently. It varies in how it progresses and what symptoms arise to affect daily living. While stiffness, shaking and balance problems are hallmarks of the disease, those problems “are only the tip of the iceberg,” says Dr. Hubert Fernandez, head of the Cleveland Clinic’s movement disorders program.
“What lurks underneath are the non-motor problems, and almost every organ system can be affected by Parkinson’s,” he said. People can lose their sense of smell or develop vision issues. They can have urinary disturbances, gastrointestinal difficulties, and develop depression and dementia. “Not everyone will get all of these symptoms, but everyone will get some to some degree,” says Fernandez.
He is hopeful that increased awareness of the disease and research strides of the last 10 years will help. The clinic is one of the sites for the Parkinson’s Progression Markers Initiative, an international clinical trial led by the Fox Foundation.
“We do need better management, and we do need a biomarker or test for disease progression, and do we need a cure,” Fernandez says. “But as more people are working on the problem, the better our chances of bumping into a cure.”
Karen Jaffe knows how Parkinson’s can affect a life and a job. She is an OB/GYN diagnosed with the disease in 2007. “I thought the doctor was nuts,” laughed Jaffe, who experienced problems with her arm and shoulder. In 2008, she saw another doctor who confirmed the diagnosis.
“I did apologize to the first doctor, and then I had to learn to deal with Parkinson’s,” adds Jaffe, who with husband Marc started a fund-raising group called “Shaking With Laughter.”
Jaffe is retiring Monday from her practice but is looking forward to the next chapter. “Shows like this can help people realize that there can be something more,” she says. “I realized that I couldn’t possibly be put on this planet just to have Parkinson’s disease.”
Jaffe will next work with her charitable group and the Fox Foundation’s Patient Advisory Council.
For Schaefer, the next chapter is continuing to travel, and work on some genealogy projects.
And for Maurer, it’s about keeping a positive attitude, keeping up with the Cleveland Clinic study, and fixing things. “Sometimes my wife tells me I should call somebody, but I know I can fix this stuff,” says Maurer.
What they all will be doing next week is tuning in again to the show. “This is pretty funny stuff,” says Maurer. “It’s good to see him (Fox) back on TV.”