The baby’s grandfather paused for a moment, then turned to the mohel as they were preparing the boy for circumcision.
“I think I have to tell you something,” he said, a look of concern washing over his face as he gingerly handled the child. “I have Parkinson’s disease.”
The mohel, Dr. Karen Jaffe, looked down to hide her smile.
“I’ve got to tell you that so do I,” she told him.
The irony wasn’t lost on either of them.
“So the two adults that are taking care of the baby have Parkinson’s. The two of us were cracking up,” said Jaffe.
Sometimes laughter is the only way to cope with such a serious disease. That’s how Jaffe and her husband, both longtime Cleveland Heights residents, handle their fear.
The two started the nonprofit, Shaking With Laughter, to raise money for the Michael J. Fox Foundation, which is headed by the famous actor now known worldwide for his own battle with PD.
Their first big fundraiser, a night of comedy and music called “Shaking with Laughter – A Funny Fundraiser for Parkinson’s,” will be Saturday, Sept. 24, at Breen Center for Performing Arts at St. Ignatius High School.
Dave Coulier of Full House fame and Wayne Cotter, a favorite of the late-night talk show circuit, will provide the comedy for the night. Both Coulier and Cotter are friends of Jaffe’s husband, Marc, an established comedian and writer whose credits include writing for the TV show Seinfeld, most notably the episode where Elaine’s nipple became exposed in a Christmas card.
Also performing will be jazz musician John Pizzarelli. Tickets are $50 and can be purchased through the Shaking With Laughter website.
Perhaps the best example of the couple’s coping mechanism for the disease is the title of their organization, an obvious play on the tremors associated with PD.
“We all have things we are afflicted with, and the best way to deal with them is to have a sense of humor about them. That’s what we hope people will do," Marc Jaffe said. “We’re certainly not making light of it. My wife and I struggle with it daily.”
It took a long time for Marc and Karen, who have been married for 23 years, to reach that point. For about a year after she was diagnosed, Karen Jaffe kept her disease a secret from colleagues and clients, fearful that she would lose her job as a mohel, a Jewish person who performed circumcisions, or as a prominent OB/GYN in the area.
Keeping it a secret was a constant struggle, she said. At a Fox Foundation scientific session that she attended in New York City, a video played of people talking about why they were raising money for the organization that brought tears to her eyes.
“I just remember sitting there crying thinking that I had no voice,” the 52-year-old said. “I didn’t know how to do this because I wasn’t ready to tell people.”
She explains that her reservations about coming forward had to do with concern that others would think she could no longer do the job, concerns that would be unfounded since she was not and still is not afflicted with the violent tremors associated with those in the advanced stages of PD (her own doctor says she has “Parkinson’s-lite”).
She said doctors, in general, also have a tough time being on the other side of the medical relationship.
“It was so hard to get my head wrapped around the whole thing,” she said. “Physicians don’t really like being on this side of the fence.”
She even remained anonymous while raising money to fight the disease, starting a fundraising campaign called Team Fox Knitters where she designed and sold scarves that raised about $20,000. On the website she created for the group, she wrote that TFK consisted of several women who had some association with PD.
“Which, of course, wasn’t true. It was just me,” she said.
Those early struggles weren’t without their lightheartedness. Karen made an appointment with a neurologist that was as far away from her own practice on Green Road as she could find so that no one she knew would find out. Then as the appointment neared, she discovered that the neurologist’s practice had moved — right next to Jaffe’s office.
She eventually grew tired of hiding her disease after she learned that people close to her kept donating to the Fox Foundation in her name. At first she would call in to have her name removed, until one day she had had enough.
“Finally one day I said screw it,” she said. “I kind of got my voice back, through the Fox Foundation and through these fundraisers.”
Now, she said, physicians who work with PD recommend their patients speak with Jaffe to learn how to cope with the disease. Those same patients will make appointments to see Jaffe at her practice, not for an exam, but just to talk about their shared struggles with the disease.
“It’s a very interesting role that I’ve played in Cleveland and that is to be somebody that can advocate for people and to be somebody to just sort of lean on,” said Jaffe, who has three daughters. “When you have a diagnosis like this it’s good to have somebody to talk to. A lot of people feel very isolated and very lonely with this, because when they hear Parkinson’s they show you a picture of an old man slumped over. It’s a very scary thing to have happen.”
Her husband has also joined the fight. He wrote a play that debuted in Cleveland about the funny experiences his family has had with PD called, Side Effects May Include, which raised more than $20,000 for the Fox Foundation and recently volunteered for a five-year clinical study to identify biomarkers of Parkinson’s disease progression, or in other words, what makes people have the disease.
In the Parkinson’s Progression Markers Initiative he joined in December, Marc Jaffe, 52, is acting as one of the study’s controls and one of the procedures he has to undergo is a spinal tap every six months for the first year, which he describes as “not fun, but you can tolerate it.”
Asked why he would go under such a painful procedure just for testing purposes, Marc Jaffe said the answer is simple:
“My wife,” he said. “You know you have somebody you love that’s struggling with the disease and they’re close, or at least they think they’re close to finding something, so you think, ‘What can I do?’ One of the ways I can help is by participating in this study.”