Participating in clinical trials is one of many ways to stay active in the pursuit of a cure for neurological disorders, such as Parkinson’s disease. In this post, shared by The Michael J. Fox Foundation, Susan Mollohan shares how she combines her love for exercise and determination to participate in the pursuit of a cure for Parkinson’s disease by participating in clinical trials. For more information about participating in clinical trials, visit www.michaeljfox.org/clincialtrials.
Susan Mollohan first noticed a tremor in her hand while at work as the Dean of Students at a high school in New Hampshire. After about four to six months of living with the tremor, the high school nurse, a friend of Susan's, suggested she see a neurologist. Soon after her diagnosis with Parkinson's disease (PD) in March 2009, Susan soon began taking advantage of opportunities to learn more about her diagnosis, and ultimately, do something about it.
At an educational seminar at Boston University about Parkinson's disease, Susan learned about an observational clinical trial studying the impact of exercise on PD progression that needed volunteers. "I was motivated to participate so that researchers could publish information about the benefits of exercise for other people with PD," says Susan, an avid skier and yoga devotee.
The study at Boston University lasted two years and required participants to come in for two visits each year. Participants were asked about their exercise routine, including type and frequency, and then underwent general physical assessments of their pace, balance, etc. "Participating in this trial gave me an improved outlook and attitude about my diagnosis," says Susan. "People need to take control of their health questions and get out there to find answers. We have to advocate for ourselves and not give in to the diagnosis." You can learn more about participating in clinical trials by visiting www.michaeljfox.org/clinicaltrials.
Since the completion of the study, Susan says she's willing to participate in another trial has registered as a volunteer on Fox Trial Finder, The Michael J. Fox Foundation’s online clinical trials matching tool. Fox Trial Finder (www.foxtrialfinder.org) matches interested PD patients and control volunteers with the clinical trials that need them, and allows them to send direct anonymous messages to pursue enrollment. In doing so, Fox Trial Finder empowers the patient community to play an active a role in drug development. Since its launch in 2011, over 24,000 people both with (76%) and without (24%) Parkinson’s disease have signed up on Fox Trial Finder.
In addition to searching for new trials to participate in on Fox Trial Finder, Susan does yoga more now than before her diagnosis and has even written a book about the positive effects of yoga on her Parkinson's symptoms. Susan also fundraises for Team Fox and this year she and her husband Steven will participated for the fifth time in the annual New England Parkinson's Ride, a 50 mile bike ride through Maine benefitting The Michael J. Fox Foundation. Her team’s name is Suzy's Shakers.
And she's certainly shaking things up: Susan says her goal is to put a face to Parkinson's disease. Recalling an anatomy class she visited while working at the high school, she says, "Two girls happened to be giving a presentation about PD. They used a picture of a hunched over, elderly man. I told them, 'That's not the face of Parkinson's...this is.'"