When Cristina Colón-Semenza tells her physical therapy patients to make broad brush strokes in the air, she means that quite literally.
She wants those with Parkinson’s disease who she’s working with to practice moving their arms when they walk, overexaggerating up and beyond shoulder height during therapy sessions so when they’re in their own environments more regular arm swinging and the natural gait that comes along seem more familiar, more normalized.
But for the past three years, when she’s given the directive to make broad brush strokes it’s because those living with Parkinson’s have been painting with their bodies as part of an interdisciplinary research study that looked at whether art – in this case, photography – could help improve the motor skills of those with the disease.
“People are living longer with Parkinson’s disease, sometimes up to 20 years. It doesn’t alter your life expectancy, but it can influence your quality of life,” Colón-Semenza, an assistant professor in UConn’s Department of Kinesiology, says.
In 2020, Colón-Semenza says she was in a virtual meeting for early career faculty, when she wrote in the chat that she was interested in collaborating on a to-be-determined project with researchers from outside the College of Agriculture, Health and Natural Resources.
Clare Benson, then an assistant professor of photography, and Charlotte Gray, then an assistant professor-in-residence and director of the Alexey von Schlippe Gallery at UConn Avery Point, responded that they, too, would like to stretch their work out of the Department of Art and Art History and School of Fine Arts.
Over the next year, the trio developed their project, “Movement, Creativity, and Community: Improving Gait and Quality of Life in People with Parkinson Disease through Photography and Collective Experience,” and secured funding in 2021 through a School of Fine Arts STEAM Innovation Grant from the Office of the Vice President for Research, Innovation, and Entrepreneurship that allowed them to get to work.
“I’ve always been interested in the field of medicine, and as an artist I once even thought about medical illustration as a career. Even though I never expected to be involved with a project like this, it wasn’t entirely a surprise,” Benson says. “I’ve collaborated with scientists before in different contexts because I’m interested in exploring ways that visual images can become part of scientific conversation or learning.”
Colón-Semenza, Benson, and Gray turned one of the physical therapy rooms in the Horsebarn Hill Sciences Complex into a photography studio: blacking out windows, setting up lights and filtering screens, hanging a dark backdrop across the wall, and gearing up with camera, computer, and monitor.
Eleven volunteer participants visited twice a week over eight weeks for physical therapy sessions during which they were instructed to paint broad strokes with their body while donning any combination of light-up accoutrements, things like lighted wrist and ankle bands, clip-on fingertips, a fluorescent safety vest, glow sticks, and flashlights, whatever they wanted.
Then, the overhead lights went out, the camera’s shutter speed was set to a long exposure, and participants got the nod to walk, overexaggerated, in front of the backdrop as if it were a background stage curtain.
The result was images of the lights in motion however participants decided to move their bodies, whether zig zag, straight, loop de loop, half-moon, over the head, heart shape, butterfly shape, or cursive scrawl. Reflective patches on sneakers and athletic wear, along with bright-colored clothing, added to each picture’s dramatic effect.
The control group of five engaged in traditional gait training, but then looked at landscape images on the monitor at the same rate the test group looked at the images that had just been created. The six in the test group went home with printouts of their best piece of art.
“There were times when the image didn’t really work or it was too dark, and I’d say, ‘OK, let me change the camera settings, but let’s try that again.’ And we’d do it again. Sometimes, even, they would go across, see the image, and then be inspired to do something different the next time,” Benson says. “It was really nice to see that they got excited enough to want to start trying new things to manipulate the image.”
Colón-Semenza says the typical gait pattern for someone with Parkinson’s is slow, short, shuffling steps. Using things like a metronome or music can train a person to move their body faster and more fluidly, she says. Even activities such as dance, boxing, bike riding, and ping-pong can benefit a person with the disease.
But oftentimes, the best way to improve a person’s walking ability is simply to walk, something that can be boring in a medical setting when done in circles around a room or up and down a hallway. This project was meant to get participants to use the best practice of high doses of repetitive activity but make it more engaging and motivating.
They also had agency over the result, in the way they moved and what light-up mechanisms they employed. That was important, Colón-Semenza says, and dovetails with what physical therapists call the OPTIMAL theory of motor learning – the more say a person has in practicing a motor skill, the better it sticks.
“Gait speed is thought to be the sixth vital sign, like the way blood pressure is a measurement of your health,” Colón-Semenza says of the importance of walking. “If your gait speed is less than 1 meter per second, the likelihood of being hospitalized or having to go into a nursing home is increased. We, as physical therapists, can intervene and help someone avoid that for as a long as possible.”
Graduate student Paria Darbandsari ’24 MS worked with Colón-Semenza to determine that participants in the study, albeit only a pilot study, improved their walking speed, endurance, and quality of life. Parkinson’s not only affects a person’s motor skills, but also causes depression as a symptom of the disease.
“Not enough people know that even though this is a progressive neurological disease there is something that can be done to help you manage it, live your life with it, maintain a high quality of life, and find some level of joy, happiness, engagement in spite of it,” Colón-Semenza says.
Gray, an art historian, says one of the first photographs of a person living with Parkinson’s, identified as “Pierre D.,” was published in 1879. Early photography required that a person remain still for a length of time to accommodate a long shutter speed, which meant any movement that Pierre D. made was captured on film.
“In the 19th century, Parkinson’s disease was sometimes called the ‘shaking disease,’ so its documentation using early photographic methods emphasized the difficulties of the person living with the disease,” she explains. “It was kind of like an added layer of stigmatization.”
Flipping that, the UConn study wanted participants to move and do so as much as possible, and one of Gray’s contributions was putting the resulting images on display for all to see.
The exhibition, “On the Move: Photographic Interventions in the Future of Parkinson’s Disease,” features a series of photographs from the study and is open to the public through Dec. 8 at the Alexey von Schlippe Gallery of Art at UConn Avery Point.
The show opened Nov. 7 and included a photography studio for those attending the opening reception to see real-time images of themselves making art in the same way the participants did.
“What I love about our project is that when I write phrases like, ‘at the intersection of art history and physical therapy,’ I think to myself, ‘Who’s going to believe this,’” Gray says. “The pairing is truly unusual, and the project ended up being something really special.”
It also was a lesson in the differences between art and science.
Benson says the process to get UConn’s approval for the human study was a challenge, especially when it came to explaining that the images would protect people’s identities but would be preserved indefinitely and are a photographer’s equivalent of a scientist’s published paper, not simply scientific data.
Conversely, it was a crash course for Colón-Semenza, who laughs when asked if she ever envisioned herself as co-curator of a gallery exhibition, not just co-principal investigator of a research project.
“Our worlds are so very different,” she says. “I absolutely love the arts and appreciate the arts, but I did not foresee this collaboration at all. I think Clare and Charlotte would attest to it: It was no small feat to bring together the science and the arts.”
Current gallery director Jeanne Ciravolo says she’s pleased the project came together and is proud Avery Point is the choice for unveiling it to the public.
“I’m interested in interdisciplinary exhibitions and cognizant of the science happening here at Avery Point, so I try to find ways to bring in programming that showcases both art and science,” she says. “This exhibition is so important because it’s an expression of the agency and creativity of those living with Parkinson’s disease.”
The Alexey von Schlippe Gallery of Art is open Thursday through Sunday from noon to 4 p.m. in the Branford House at UConn Avery Point, 1084 Shennecossett Road, Groton.
