Just before a girl’s trip in February of 2005, Susan Kauffman noticed a tremor in her right hand.
A year later, at age 39, she was diagnosed with Parkinson’s, becoming one of the 5 to 10 percent of people with Parkinson’s who are diagnosed at a young age.
“My reaction was: ‘Why me?’ I remember thinking, I’ve always been the good girl, and I’m the one everyone comes to in a crisis, not the one who has the crisis,” she says. After the initial shock, she went on with her life. “I was in denial,” she insists.
Almost three years later, Kauffman faced her diagnosis head on after reading Michael J. Fox’s book Lucky Man: A Memoir (Hyperion, 2002). “I began to hope again,” she says. “I finally felt that there was someone else out there with young onset Parkinson’s that is living life with the disease.”
The book inspired her to reach out to her siblings and admit she couldn’t go through this on her own.
“I decided to make Parkinson’s a part of my everyday life, to embrace it, talk about it, truly live with it,” she says. “I discovered a new kind of normal.”
Her new normal includes strength training, discussing Parkinson’s with her husband and children and helping find a cure. Kauffman, who works part-time as a swim coach and instructor at Midtown Athletic Club in Bannockburn and swam on a college team, decided to raise money for Parkinson’s research by hosting a fundraiser called “Kickin’ Parkinson’s, One Lap at a Time” at the Midtown in June. The event drew almost 150 swimmers and more than 500 donors, raising more than $56,000 for Team Fox, The Michael J. Fox Foundation’s fundraising arm.
Kauffman partnered with Make It Better and the $5 that Make It Better donates per new subscriber has helped her fundraising significantly, she says. She is now ranked 3rd in the Team Fox’s top fundraisers of 2009 and is one of the most successful first-time fundraisers that Team Fox has ever had.
“It’s my time to fight back,” she says. “And swimming is the best way I know how to do that.”
— Nina Vallone