After Dr. 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.
Dr. Nelson's PD / MS Narrative project was recently featured in Perspectives Magazine which highlights research, scholarly, and creative activities of Ohio University faculty, staff, and students.
In the article, Nelson discusses her motivation behind the PD / MS Narrative Project and not only the role her research apprentices play in the project, but also how they are influenced by the project.
“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.”
“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.
To learn more about the exciting direction the PD / MS Narrative Project has taken, visit the project website.
To read this complete article which appears in the Spring / Summer 2014 issue of Perspectives Magazine follow the appropriate links below for your desired format:
You can also learn more about living with Parkinson's Disease through the latest WOUB video series "Perspectives."