Parkinson's Clinical Trial Companion Navigating Clinical Trials - Page 24

Making Sense of a Parkinson’s Diagnosis Dan Kinel began participating in research just three months after learning he had Parkinson’s disease (PD). It was an unanticipated decision. Research was the last thing on his mind. Like many who are newly diagnosed, Dan struggled to understand and accept the potential implications of PD on his lifestyle. He was a partner in a law firm, and had a young family and a busy social life. “I went from feeling completely healthy to having Parkinson’s disease. It sent me into a deep depression.” When two of his friends took Dan on a weekend getaway to New York City to lift his spirits, he found himself, coincidentally, at the Foundation’s inaugural clinical trials fair. At this expo, which connects people with PD to recruiting trials, he learned of the critical need for volunteers — particularly those who are recently diagnosed and not yet taking medication. That information gave Dan the sense of purpose he’d been seeking since the day of his diagnosis. He signed up for two trials before leaving the event. Since then, Dan hasn’t stopped. Over the past four years, he’s participated in more than a dozen observational and interventional studies, both in- person and online. “I get a different perspective from each trial I do,” he explains. “I use each as an opportunity to ask questions, learn from researchers and do something meaningful to help myself and others with PD.” He also has become an ambassador for research, spreading the word in his community about the importance of participating in clinical trials, the need for volunteers and ways to get involved. Dan says being on the front lines of research toward a cure energizes and empowers him. “Participating in research changes the way you view your diagnosis, the people who provide care and the world around you. It makes you feel like you are playing an important role in solving a problem that affects millions of people.” Watch more of Dan’s story at michaeljfox.org/ParticipantPack. 22 Navigating Clinical Trials: A Guide for Parkinson’s Patients and Families