Ohio University

Video series captures the experience of living with chronic illness

PDMS Illustration
Illustration by Christina Ullman

After 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.

A Ride in Chuck's Truck

Nelson 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.

Each video project begins with in-depth interviews with the person to be featured, as Nelson and Perez probe for different angles that will shed light on the person's experience.

In "Chuck's Truck," for example, Foster drives to a West Virginia internet café while he talks candidly about the $50,000 he's lost there; gambling and other addictive behaviors are caused by a medication that controls his Parkinson's symptoms. He wants to tell his story, he says, to help others avoid this problem.

In other episodes, former Ohio University assistant professor of social work Judi Haberkorn demonstrates the difficulty she has getting around the hilly Athens campus in a wheelchair; former woodworker David Kenniston shows how he found a new creative outlet with a quilting group in Nelsonville, Ohio; and Tom Lovdal runs through the woods, trying to increase his dopamine levels without medication. Nelson is the focus of one episode called "Jenny's Radar."

"The hardest part is finding the story — getting them to revisit their everyday life experiences and try to pick the one part that is most meaningful for them, and how we can portray it," Perez says.

The purpose of the story is often found only while they are telling it, in an offhand comment or an aside that then becomes the central metaphor in the video, Nelson explains. Once that story reveals itself, Perez films while Nelson is converses with the subject.

"If we did traditional interviews, there wouldn't be the same level of engagement," Nelson says. "The videos wouldn't have life."

Jenny Nelson and Camilo Perez
Jenny Nelson and Camilo Perez (Photo by Henry Boachi)

How Video Makes an Impact

The videos can be as eye-opening for the participants as it can be for viewers. The Athens International Film and Video Festival screened five of the videos last year, and Nelson describes the Q&A session between the participants and the community afterwards as "powerful."

Perez conducted follow-up interviews for a paper on the project, and found that the participants appreciated having the opportunity to break out of the standard narrative of noble suffering—and to truly understand that they are not alone.

"David says that through the videos, he found the voice of Parkinson's," Perez says. "Now, instead of just nodding his head at support group meetings, he's actively listening, because he knows now that everyone has a story to share."

All of the stories are informed by a sense of responsibility, Nelson adds, and a desire to guide others who may follow them in the disease's footsteps.

Nelson and Perez also see the videos as an educational tool for the health care community.
Faculty in Ohio University's School of Rehabilitation and Communication Services and the Heritage College of Osteopathic Medicine have been using the pieces to teach their students about communicating with people facing chronic illnesses.

"As much as we try to teach our students the profound impact of diseases such as Parkinson's, it's sometimes difficult to convey how a neurological disease impacts day-to-day life," says Brooke Vaughn, assistant professor of physical therapy. "The PD Narrative Project has been a great way to bridge the gap between didactic education and real-life application. By attending Jenny's presentations and watching her videos, our PT students get a small glimpse of what it's really like to have PD."

After a year of production, Nelson and Perez are moving into the project's next phase: disseminating what they've discovered. Usually, that involves publishing papers for their academic community— but that is turning out to be something of a challenge.

"Why spend five pages describing 30 seconds of video when I could just show the video and then spend five pages analyzing it?" Nelson says. "How do we translate this project into traditional academic work when one of the things we've prided ourselves on is that it's not traditional academic work?"

Instead, Nelson and Perez have been taking their show on the road, presenting the videos and their methods at various conferences. After seeing the duo's presentation at the 2013 Semiotic Society of American conference, Elliot Gaines—professor of communication at Wright State University and president of the society—invited Nelson and Perez to speak to classes and faculty there.

"I invited them to share their work because my students will be learning to create short video narratives to illustrate science and research to general audiences," Gaines says. "The PD/MS Narrative project is informative and engaging, and I believe my students can learn from the style and techniques that make this project successful."

Nelson and Perez see this as a start of using the PD/MS Narrative project to make an even bigger impact. They have more national conference presentations planned, as well as new videos that can be viewed on their YouTube channel (https://www.youtube.com/user/PDNarrativeProject).

"We could keep producing videos," Perez says. "Or we can find a way to share this whole process and what it implies. We have a lot to say; we just need to analyze it and find a grammar to speak out."

This story will appear in the Spring/Summer 2014 issue of Ohio University's Perspectives magazine, which covers research, scholarship and creative activity.