As a longtime clinician and early career clinical researcher at the University of Connecticut, Cristina Colón-Semenza never thought she'd be hosting an art gallery to showcase the photographic results of a study aimed at finding ways to make physical therapy creative and fun for patients with Parkinson's Disease.
"Parkinson's disease doesn't have to just be this disease of diminishing, but it's of new ways to move and be creating with your body -- beauty and fun and enjoyment and artistic creations," she said.
Nearly one million people in the U.S. are living with Parkinson's disease, with the number expected to rise to 1.2 million by 2030, according to the Parkinson's Foundation, a national organization working to improve care and advance research on the disease.
Colón-Semenza, a physical therapist and assistant professor in the doctor of physical therapy program at the UConn kinesiology department, said Parkinson's disease is the second-most common neurodegenerative disease after Alzheimer's disease.
Parkinson's is historically thought of as a "movement disorder" that impacts motor function, like losing balance and experiencing stiffness or tremors. Colón-Semenza said recent research now shows the disease also affects mental health, motivation and other non-motor functions that impact quality of life.
As people live longer lives, she said their chances of developing the neurodegenerative disease increase, especially for people over the age of 60. Many individuals are living with early-onset Parkinson's.
Physical therapy and exercise often help people with Parkinson's manage symptoms and improve quality of life, Colón-Semenza said. However, motivating people to continue their exercises at home can be challenging, so she wanted to find a more creative way to encourage movement.
"People are living really long with Parkinson's disease...they really should be using exercise and physical activity, but how do we get them to sustain that when simultaneously the disease is causing apathy or a lack of motivation and depression?" Colón-Semenza said.
Colón-Semenza launched the study in collaboration with Clare Benson, former assistant professor of photography, and Charlotte Gray, former director of the Alexey von Schlippe Gallery at UConn Avery Point, after meeting during a faculty welcome Zoom call in 2020.
Gray said the three met after Colón-Semenza initiated talks about an interdisciplinary project that combined art and science. She said artworks have been used for thousands of years to understand human suffering and diseases and how to heal them.
"This project was particularly appealing to me because, in my research, I'm interested in how creative movement can activate communities and spaces," Gray said. "This was a wonderful opportunity to have a very contemporary application of this lesser-known intersection between the history of medicine and the history of arts."
Together, they developed "Movement, Creativity, and Community: Improving Gait and Quality of Life in People with Parkinson's Disease through Photography and Collective Experience." They secured over $38,000 in funding in 2021 through a university-sponsored STEAM Innovation Grant through the Office of the Vice President for Research and the School of Fine Arts.
The study was just a pilot feasibility trial to see how people would respond to the exercises and if they would encourage more movement from the participants. Colón-Semenza said it comprised 10 participants divided into two groups -- a control and an intervention.
Twice a week, the participants would meet with the researchers to participate in an hour of physical therapy. Both groups engaged in standard walking, or gait, training on a treadmill and on the ground for 15 minutes each. Colón-Semenza said she is coaching them with verbal cues and feedback to increase their step length and improve posture and arm swings.
For the final 15 minutes of the session, Colón-Semenza said the intervention group would perform the same training on a runway with a black backdrop. The participants could choose from various light-up props, like wrist and ankle bands, reflective vests, and glow sticks. The lights would turn off, and they would continue their gait training while a camera captured the light, almost tracking their movements.
She said the participants were encouraged to move how they wanted and exaggerate their motions, like making large arm movements and twirling. Colón-Semenza said she and the other researchers wanted to ensure that people had a lot of autonomy in the movement and art they wanted to create.
The photographer would then take a picture of them doing those large movements, and then the image would appear on a nearby monitor to show the participants how their art came out.
Gray said the images that were produced during the study also worked as good markers for what movement looked like in a creative environment. Participants would see the photos taken in real-time and take phone a print of their favorite one from the session.
Although she participated in the study remotely, Gray said she noticed a lot of smiles on the participant's faces and it seemed that everyone in the room was excited to see how the photos would come out.
"It was this really great way of disseminating a sense of agency and creativity and progress and hope," Gray said.
Colón-Semenza said the control group had the same traditional gait training on the same runway but was shown different landscape photos. The results found that both groups improved in distance and speed and reported better quality of daily life. But, she said the intervention group had larger improvements than the control.
However, Colón-Semenza said they were surprised to see how much the control group improved. She said the landscape images would help stimulate memories and conversations while they walked, which was enough to engage them.
"Something as simple as looking at images, even if it's not interactive images, can be a positive way to get people to practice their walking more," she said.
The trio of researchers hosted an exhibition, "On the Move: Photographic Interventions in the Future of Parkinson's Disease," highlighting photos from the study. It was opened to the public in early November for a few weeks at the Alexey von Schlippe Gallery of Art at UConn Avery Point.
Gray said she thinks the exhibit and study helped people think differently about the way their personal and professional interests can intersect in a powerful way.
"I just hope that the creativity and the joy that we were able to witness in this project is something that will uplift people and encourage them to maybe think differently about what healing can look like and what communities can accomplish," she said.