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Riding across Iowa is only one thing Dr Karen Jaffe has done since being diagnosed with Parkinson's

posted Sep 12, 2012, 5:50 PM by Dianne James
Dr Karen Jaffe doesn’t like to talk about herself or her battle with Parkinson’s disease.

She’d rather discuss what she, her husband, Marc, and others are doing to find a cure. The clinical trials paid for by the Michael J. Fox Foundation and the findings. The resources she’s sharing with Clevelanders with Parkinson’s. The bike rides across Iowa that she’s participated in to raise money. That grandmothers and grandfathers are not the only faces of Parkinson’s. That other people struggle more than her.

She’s used to being the caretaker, worrying about others.

The Cleveland Heights resident is a prominent OB/GYN in the area, and a mohel, a Jewish person who performs circumcisions. She has three daughters.

She’s not used to being the patient, and, as most doctors say, she doesn’t like being on the other side of the table.

For nearly two years after she was diagnosed with Parkinson’s Disease, she kept it a secret from her family, her friends and her patients.

But now she’s involved in — and leading — a variety of philanthropic endeavors working to find a cure.

She and her husband, comedian and writer Marc Jaffe, created an organization in April 2011 called Shaking With Laughter, which has already raised more than $174,000. Their second annual benefitis Saturday, Sept. 22, at Ohio Theatre and will feature blues singer Keb’ Mo’, comedian Jake Johannsen, a regular on the David Letterman Show, and an online auction on Charity Buzz, which launched today.

Proceeds from the event, like all Shaking With Laughter benefits, go to one place — The Michael J. Fox Foundation, which, like Jaffe, is focused on finding a cure.

"As a physician I have a voice that others don’t have, and I can call up specialists at hospitals, and they’ll listen to me," Jaffe said. “I think I can make a difference because I know that it is hard to live with (Parkinson’s) day to day. And we all want to believe that there will be a cure someday."

As an active, healthy woman and at the young age of 48, Jaffe couldn’t believe she had this incurable illness. It wasn’t in her family. She didn’t want it to jeopardize her job and role as a mohel, so she and her husband kept quiet.

She went to a conference in New York and heard people from the Michael J. Fox Foundation speak.

“At that first conference I went to, I didn’t know anybody with Parkinson’s. I was still in the closet,” said Jaffe, now 53. “At the end of the thing they had this whole presentation by Team Fox people, and everybody talked about how they were helping and what they were doing, and I sat there and cried because I felt like I had no voice.”

She launched her first fundraising initiative anonymously. She made women’s shawls and called the group “Team Fox Knitters,” though she was the only one knitting. She raised $20,000 from the project.

Fox, the actor whose struggle with Parkinson’s and philanthropic work is well known, inspired her.

“The Fox Foundation is one of the most well-run organizations. They have no endowment. They spend every penny. They figure if there is a study out there, they should be funding it. Michael (Fox) always says he’s not a bank. So they would love nothing more than to go out of business,” Jaffe said.

She and her husband eventually decided to stop sitting silently on the sidelines.

“I had some conversations with other people who are afraid to tell because they are afraid how their colleagues or clients will see them, but for me I got lucky because everybody was just great. And I don’t worry about that at all,” she said. “I think everybody is allowing me to decide when it’s time to hang up my stethoscope.”

Marc Jaffe and playwright Eric Coble, also a Cleveland Heights resident, wrote Side Effects May Include, a comedy about some of the, well, unexpected side effects from Parkinson’s treatment and how everyone adapts. The play, which premiered in April 2011, will run again Feb. 21-24, 2013 atEnsemble Theatre. The show raised $20,000 for the Fox Foundation.

“That was sort of the impetus for letting people know, because we knew we could do something positive,” Marc Jaffe said. “When we came out in the open, we hoped that we would get support, and we did, so that was a big help.”

Humor is one way the family has dealt with the difficulty of Jaffe’s diagnosis, as evidenced by their organization’s name, Shaking With Laughter. Karen Jaffe quoted Bill Cosby to “sum up how we feel about it.”

“Through humor, you can soften some of the worst blows that life delivers. Once you find that, then no matter how painful your situation may be, you can survive it,” she said. But she added, “It’s easy for me to be optimistic because I’m not that sick. Other people are much worse off.”

Jaffe can still perform surgeries and exercise. She can’t play the piano anymore, but she jokes, “I was never very good anyway.” She also buys flip top toothpaste and contact cases so she doesn’t have encounter those repetitive, twisting motions.

She calls her handwriting “terrible,” but a calligraphy pen helps.

Marc Jaffe said though many moments are not light-hearted, sometimes, laughter is the best medicine.

“It gives people permission to laugh, because it’s not something that normally you could laugh at,” said Marc Jaffe, who wrote for Seinfeld.

The couple says feeling empowered also helps them cope. Marc Jaffe is a participant in a five-year clinical study as a control, or someone without Parkinson's, to identify biomarkers of Parkinson’s disease progression, or what makes people have the disease. He undergoes a spinal tap each year as part of the study.

Karen Jaffe rode her bike across Iowa twice as part of RAGBRAI, Register’s Annual Great Bicycle Ride Across Iowa, an annual, seven-day bicycle ride across the state. She and a team of cyclists in Pedaling for Parkinson’s raised more than $60,000. She signs up for clinical trials when she can.

She also recently launched a website, Parkinson’s Wellness Resource Center of Cleveland, which provides people a variety of information, including where people with Parkinson’s can go to exercise.

“I think it’s really important that Parkinson’s patients be offered exercise, but the problem is you don’t really know where to go or whether you’ll be welcome,” Jaffe said.

There's also a link to something Jaffe is most excited about, the Fox Trial Finder, an online tool where people with and without PD can go and sign up to participate in clinical research going on in their area. She said her family, friends and patients have signed up.

She’s also participated in bike studies to measure how cycling can help reduce tremors and other Parkinson’s symptoms.

And she’s now a member of the Michael J. Fox Foundation Patient Council, a group of about 20 people with Parkinson’s who “interface between the researchers and the Parkinson’s community, trying to figure out how they can best get people involved and represent the patients,” she explained.

When asked when she sleeps, she mentioned that sleeplessness can be a side effect.

Jaffe talks about the disease like the doctor she is, but said she tries to avoid looking at medical abstracts.

“When I looked at some of them I thought, my God, what’s going to happen to me? You’re going to start driving backwards and crawling out of bed and all of this other stuff so I tend not to look at the research, the abstracts,” she said. “I understand what the Fox Foundation is doing and I understand what projects they’re working on, but in terms of the minutia, I kind of stay away from it.”

"My life is richer"

Last year, the couple raised $80,000 from the first Shaking With Laughter concert and comedy show, and $55,000 from the online auction, which included a 20-minute pitch session with Larry David. The goal was to raise $50,000, but the auction did much better than expected. Their goal is $100,000 this year.

This year’s online auction prizes include an opportunity to meet Jerry Seinfeld and two tickets to one of his upcoming shows, and lunch with Full House stars and comedians Bob Saget and Dave Coullier. Karen Jaffe will speak briefly in the beginning about the faces of Parkinson’s, people she’s met along the way.

Karen said though she couldn't imagine saying this when she was first diagnosed, "a lot of good has come out of (having Parkinson's)."

"My life is richer as a result of it and the work I've done. It's one thing to be a patient, but to have to be a physician who now is a patient and sees what life on this side of the fence is like has been difficult, and it's been humbling. And I think it helps me in my own practice," she said. "The advocacy work that I've done that I wouldn't have done before, the fundraising, all of this stuff I've done with the website, I don't know where I get the motivation to do it except that I feel like I should."