fter media scholar Jenny Nelson was diagnosed with Parkinson’s disease in 2010, she encountered two types of stories about the disorder, and neither of them felt right. The medical literature was stark: Parkinson’s disease is a brutal degenerative brain disorder that gradually robs its victims of movement as it progresses from trembling hands to total immobility. The disease itself isn’t fatal, but its symptoms can cause other problems, such as pneumonia or broken bones. The second type of literature—advocacy and support materials, including Parkinson’s disease websites and YouTube videos—told a different story. “What was out there all seemed to be similar: personal testimonies, celebrities ‘struck down’ at the peak of their abilities, foundation information things that feature a person with PD and an expert,” Nelson says. And they all seemed to follow the same clichéd and feel-good narrative, which was out of sync with what Nelson herself was experiencing. “There’s a cult of positivity in PD—you can battle the disease better if you just soldier on and make jokes,” she says. “It’s amazing how that narrative becomes internalized without anyone explicitly teaching it.” Nelson, an associate professor in the School of Media Arts and Studies, is especially attuned to narratives and media messages. She’s spent her 25 years at Ohio University studying media and how it affects our perceptions of the world. In 2012, Nelson and Professor Emeritus Karin Sandell applied for an Ohio University 1804 Fund grant to study the personal narratives of people with Parkinson’s and multiple sclerosis (which Sandell was diagnosed with two decades ago). “Our deliverable was going to be pamphlets for doctors’ offices—outreach for patients, education for doctors,” Nelson says. But the project took a radical turn.
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A RI DE I N CH UCK’ S TRUCK elson had been attending a weekly Parkinson’s disease support group in Vienna, West Virginia, for a few months when she decided to invite her new research assistant, Camilo Perez, to come along with his video cameras. Perez, an experienced videographer, is the co-founder of Pasolini en Medellin, a nonprofit social organization in Colombia that empowers residents (mostly youth) in poor neighborhoods besieged by drug cartels to use video to effect social change. “Video offers an opportunity not only to share a story, but also to confront one’s self. That leads to internal transformations,” Perez explains. Although he didn’t know anything about Parkinson’s disease, Perez recognized a parallel between his experiences in Colombia and those of Nelson and the support group. “I identify with it in this sense: There’s a huge structure on your shoulders. For them it’s a disease; for me it’s violence in my own country,” he says. During that first visit, Perez met Chuck Foster, who’s been living with Parkinson’s disease for 15 years. “After the meeting, Chuck comes up and says, ‘Do you want to go for a ride?’ and Camilo didn’t even hesitate,” Nelson recalls. Perez climbed into the cab of Foster’s pickup and started shooting while Nelson followed them in her car. Reviewing the footage later, Nelson realized she had found her project—and an ideal collaborator. The experience led to a new focus for the PD/MS Narrative Project, a series of five-minute videos featuring people with Parkinson’s disease that capture their life with a chronic illness.
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