Parkinson's Clinical Trial Companion Navigating Clinical Trials - Page 28

Partners in Research When Steven Spencer received his Parkinson’s diagnosis 13 years ago, he didn’t hesitate to sign up as a clinical trial participant. And neither did his wife, Kae, who joined him as a control volunteer. The couple, who’ve been married for more than 40 years, are used to doing things together — studying for college exams, working as speech pathologists and raising their children. When Parkinson’s disease (PD) entered their lives, it was natural to partner in research. Steven and Kae have participated in several studies — some together, some independently. For instance, they can take part in Fox Insight, MJFF’s online study, at the same time from their living room. Steven completes quarterly questionnaires to tell researchers about life with PD; Kae fills out the same surveys as a control volunteer. Other trials require Kae’s assistance so that just Steven can participate — she drives him to appointments and helps him navigate the medical center, for example. Kae sees this as her contribution, too: “We’re a team,” she states matter-of-factly. “We’re in it together.” Steven’s deep brain stimulation (DBS) surgery three years ago hasn’t stopped the pair either. In fact, it may have given Steven more energy to pursue the studies that need him — the procedure lessened his fatigue and eased his motor symptoms. But as with all medical conditions or medications, DBS makes him eligible for some studies and excludes him from others. Steven and Kae’s involvement in research goes beyond clinical trials. In February 2017, they attended MJFF’s Public Policy Forum in Washington, D.C. There, they joined 200 other care partners and people with Parkinson’s to advocate for Parkinson’s research, drug development and health care. Of their experiences in Parkinson’s research, Kae observes, “There are thousands working on a cure, and they’re chasing down thousands of pathways.” She goes on, “It’s humbling to see so many at work, and it’s empowering to know we are part of that.” Watch more of Kae and Steven’s story at michaeljfox.org/ParticipantPack. 26 Navigating Clinical Trials: A Guide for Parkinson’s Patients and Families