A professional development specialist at a charter school in the Bronx, Bruce Ballard is always looking for new and interesting stories to incorporate into the tests and writing assignments he prepares for the school. So when Bruce was diagnosed with Parkinson’s disease, he decided to use his story as a reading for his students’ test prep. “I’m willing to be open about a lot of things,” he said. “It was not a problem for me to come out and tell my school. And actually, I was feeling pretty good.”
Bruce started off being misdiagnosed with multiple sclerosis or Lou Gehrig’s disease. He in fact felt relieved when he learned he actually had Parkinson’s. He’s 61 now, and can’t retire until he’s 70, so he’s finding other ways to take part and share his story. Bruce got involved with Fox Trial Finder, The Michael J. Fox Foundation’s online clinical trials tool. Every now and then he gets emails from the Foundation saying they’ve matched him with a study. If he had more time, Bruce said he’d do more. But right now, he tries to participate in research during breaks and holidays.
The first trial Bruce participated in required a skin biopsy. It was 10 minutes and a quick snip. He’s also participated in two studies at Columbia University in New York City which involved cognitive questionnaire experiments. Bruce says it’s a “series of fun games” including pictures, remembering numbers and counting back from 100 by sevens.
“I know how important it is for the researchers to get this kind of data,” he said. The biggest hurdle is getting people to sign up, he said, adding that “many researchers have the study protocol and the money, but not the volunteers. I feel bad that I’m not able to do more.”
“It’s all pleasurable, and almost fun,” Bruce said. “It’s so worthwhile and in your best interest. A cure can be found much more quickly if people do this.”
For those who haven’t participated in a trial, Bruce said they should know it can be very easy. “The trial team staff is great, there’s no reason not to do it.” But there’s also a chance to get feedback from new doctors. When having a lumbar puncture done for one study, doctors found something unusual with his spinal fluid and sent the results back to his regular neurologist. “It’s good to have a second, third and fourth set of eyes looking you over and talking to you about your condition,” Bruce said.
You can learn more about PD clinical trials in your area by signing up for Fox Trial Finder today: www.foxtrialfinder.org.
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.