One man’s battle with Parkinson’s serves as inspiration for CHSP symposium

Published: March 31, 2023 Author: Macklin Caruso

Parkinson’s isn’t a diagnosis that can be packed away into one neat box. It cascades, and effective treatment requires an interdisciplinary approach. To focus on the interprofessional nature of Parkinson’s, the College of Health Sciences and Professions will host “Walk a Mile in Their Shoes: An Inter-Professional Education Parkinson’s Symposium,” which will share the nuances behind Parkinson’s as experienced by keynote speaker John Cullen.

“I am very excited to share John and his story with not only our faculty, staff, and students, but with our community of Athens, particularly those who have been impacted by Parkinson’s as a diagnosis,” said Jenny Chabot, an associate professor in the Department of Social and Public Health. “We welcome our Ohio University and greater Athens community to join us to meet and talk with John in-person or virtually.” 

The three-day event will take place from Monday, April 3, to Wednesday, April 5.  On Monday, faculty and staff will facilitate discussions with interdisciplinary student groups about the cross-section of their chosen professions and working with Parkinson’s disease. The discussion will be followed by a documentary about Cullen’s battle with Parkinson’s titled “It’s Just Parkinson’s.” On Tuesday, Cullen and his partner, Pattie Stoffel, will share stories about his life and his Parkinson’s diagnosis. On Wednesday, there will be live demonstrations of class projects around Parkinson’s disease.

“Our family has known John Cullen for over 30 years. When he first shared the documentary with us, as I watched it, I could see how there is not one discipline within our college that doesn’t intersect with Parkinson’s as a diagnosis,” Chabot said. “Even my major, which focuses on pediatric patient psychosocial care, has an incredible connection in that child life specialists play a powerful role in helping children understand what is happening to a parent or grandparent when they are first diagnosed with Parkinson’s.”

There are more than 10 million people worldwide living with Parkinson’s disease. It’s an uncurable progressive nervous system disorder. Though symptoms generally develop slowly and vary among individuals, common symptoms include tremors, stiffness and limb rigidity, slowness of movement, balance problems, trouble with coordination, difficulty speaking, depression, anxiety and fatigue.

The documentary “It’s Just Parkinson’s” chronicles Cullen’s battle with Parkinson’s. However, “It’s Just Parkinson’s” isn’t just the name of the movie, it’s Cullen’s personal mantra. It’s his way of maintaining control over his psyche by refusing to allow the disease to be his defining characteristic or dictate his future.

Cullen was diagnosed with Parkinson’s when he was 62, shortly after his retirement from the financial industry. For Cullen, who is a lifelong athlete who has climbed Mount Rainer and cycled the Pyrenees Mountains, a diagnosis with a debilitating nervous system disease could have proved catastrophic. However, through stubborn determination Cullen is resolved to continue to live life to the fullest, despite living with a disease that has no cure.

Instead of succumbing to his diagnosis, Cullen implemented a regimented routine of physical exercise that is crucial to maintaining his quality of life. Since his diagnosis he began CrossFit training and completed over a dozen Spartan obstacle races, a feat that is almost unheard of for someone with Parkinson’s. In 2019 Cullen took up powerlifting and much to his surprise he discovered that it stressed his central nervous system, which scaled back some of his Parkinson’s symptoms. He stood taller, his feet stopped dragging and his gait improved exponentially.

Cullen shares his story through his Instagram page, where he helps to foster a community for those who also live with the neurodegenerative disorder.

To learn more about the event, visit the event listing in the Calendar of University Events.