“Being involved in research or promoting research… it’s like being able to harvest 10% of the placebo effect. It really can add some measure in your life,” says Libbe Erickson, whose husband, Kim, was diagnosed with Parkinson’s disease in 2010. “[Participating in research,] we don’t feel as much like victims,” she went on. “Parkinson’s doesn’t have to change your life as negatively as it could.”
A little more than a year ago, both Libbe and Kim created profiles on Fox Trial Finder, MJFF's online clinical trials matching tool, that generates a custom list of trial matches to each person registered based on some medical and personal information. With the help of Fox Trial Finder, Kim has been in five studies, and Libbe in two. These days, they’re on a first-name basis with the researchers at the University of Minnesota, where they have participated in most of these trials. They’ve done things from drug trials to MRIs, cheek swabs, and numerous paper questionnaires.
“We try to spread the word as much as we can,” Kim says. “It’s keeping me fairly busy.” Since his diagnosis, the retired airline pilot said he’s undergone a lifestyle change. After spending much of his life in the air, he now stays close to home spending time with family and working to help cure PD.
Once Kim began participating in one trial, he was approached by the Parkinson’s Disease Foundation to be Parkinson’s Advocates in Research (PAIR). They’ve given presentations to support and Rotary groups in Minnesota and North and South Dakota. The Ericksons have also contributed to questionnaires that researchers use to gather information about family and health histories. The more familial information researchers get, it the more knowledge they have to help identify genetic markers and ties, even drugs and chemicals. It strikes a chord with Libbe, since her father also had PD.
When they’re speaking at one of their two support groups or many of the PD-related events they attend, Kim and Libbe say it’s important to get the message across to fellow PD patients and caregivers that [participating in clinical trials] is safe and worthwhile. “So many people feel everyone else will do it for them,” Libbe says. “They mistakenly feel like there’s this pool of people waiting to be involved in research. They don’t realize there are too many people like them waiting for someone else to do it.”
Kim and Libbe admit their cause isn’t purely an altruistic one. It’s also about the personal gain and “sharing the wealth.” If you’d survey people involved in research, Libbe says “I would bet their assessment of their quality of life is higher than the overall person simply living with the disease.”
You, too, can find trials as easily as the Erickson’s did by signing up for Fox Trial Finder. “It’s the easiest way for most people to make a difference,” Libbe says. Join the Ericksons and the more than 23,000 volunteers who have already registered by visiting www.foxtrialfinder.org today.
Kate Harmon is a guest blogger for FoxFeed and profiles members of the PD community who have participated in clinical trials when she's not working as a newspaper editor. Her father has Parkinson's and her entire family is involved in the fight. Check out their family blog for more of these PD warriors, www.pcrfinc.com.