Karen Regan Jaffe '81 turns to comedy to raise funds in the fight against Parkinson's.
The secret is out: Karen Regan Jaffe ’81 M.D. has Parkinson’s disease. She lifted the curtain on her condition with public pronouncements in 2010 after nearly three years of secrecy. Characterized by tremors, Parkinson’s was an especially problematic diagnosis for Jaffe. Being a surgeon and mohel, a Jewish person trained in ceremonial circumcision, she worried that people would define her by her diagnosis instead of her ability and skill.
As a consequence, she followed the lead of the nation’s face of Parkinson’s, actor Michael J. Fox, who refused to share his condition with the public for seven years. “I thought if he can do it, so can I. For the most part, I kept it secret because at the time I was the only non-orthodox mohel in Cleveland,” she said. “I was symptom-free and people would never have guessed I had the disease.”
Nevertheless, she went to some lengths to protect her privacy—most notably when the movement disorders clinic she attended moved next door to her own practice. “I was sneaking in and out of there like Mata Hari, hoping not to run into anyone I knew, ” she said. It was the first of many laughs on the disease journey.
Jaffe ended her self-imposed silence in letters she sent to colleagues, patients, rabbis, and other community members in 2010, but it was another couple of years before she decided to close her practice. “I think the stigma associated with Parkinson’s disease is almost self-perpetuating. Many people have preconceived notions that we are less able, so we hide it until we can no longer hide it anymore. I decided that if there was a time when I was having to take more medications just to work, I would quit.” That day arrived September 30, 2013, when she closed her practice to become a full-time advocate for Parkinson’s research with her husband, Marc Jaffe.
The couple had already formed a nonprofit organization in 2010 called Shaking with Laughter (www.shakingwithlaughter.org), which, as the name implies, emphasizes humor as a disease-coping mechanism. Since its formation, it has raised more than $700,000. Marc, a comedian and comedy writer whose credits include several Seinfeld episodes, wrote a one-man show titled Side Effects May Include that mined humor—including his wife ducking surreptitiously in and out of the movement clinic—from the couple’s difficult situation. Their annual fundraiser in 2014, held in September, featured a sold-out performance by comedian Brian Regan at the Palace Theatre on Playhouse Square in Cleveland, coupled with an online auction on www.charitybuzz.com that sold VIP tickets to the set of the hit TV sitcom The Big Bang Theory, among other prizes.
Even though she was a physician, Jaffe reacted to her diagnosis the way most patients would: with a mix of shock, anger, and denial. When a neurologist told her he thought she had Parkinson’s in 2007, she dismissed him as an “idiot.” When another physician confirmed the diagnosis a year later, she shut down. “As soon as he said ‘Parkinson’s,’ I didn’t hear him anymore. I felt very vulnerable, just like anybody else would,” she said.
Now Jaffe’s role as a physician has changed from treating patients to advancing Parkinson’s research. “We’re not going to find a cure unless patients step up to the plate and participate in research,” she said. To that end, Jaffe is an ambassador for the Fox Foundation’s Fox Trial Finder that helps match people to clinical trials. Shaking with Laughter donates the bulk of its proceeds to the Michael J. Fox Foundation for Parkinson’s Research. Jaffe sits on its Patients Advisory Council of the organization, which she says is particularly exciting because “I get to know what is happening in the field before anyone else,” including the development of a therapeutic vaccine.
A native of St. Louis who was raised in Cleveland, Jaffe majored in chemistry at Kenyon but did not decide to enter medical school until a year after she graduated. “I loved Kenyon, but looking back on my time there, I remember seeing a physician several times for hypotension. Knowing what I know now, I believe that was an early sign of Parkinson’s. It tends to be a disease that progresses very slowly.”
Karen and Marc Jaffe are the parents of three daughters, ages nineteen through twenty-three, who are active in their support of Shaking with Laughter.
“Michael J. Fox once said that for everything he has lost from the disease, he has gained something more valuable,” Jaffe said. “I’ve always seen the glass as half full. My role as a doctor and mohel are done now, and this is a new chapter. And I am proud to say that I think Marc and I are making a big difference.”