Professors work to empower people suffering with Parkinson’s Disease

URI professors advance programs to help better diagnose and support people diagnosed with Parkinson’s Disease. PHOTO CREDIT: Nick Pierson | Contributing Photographer

Professors at the University of Rhode Island are working to create an interdisciplinary program to give patients with Parkinson’s disease a better education upon their diagnosis.

Former physical therapist and URI professor Chris Clarkin is currently working on a research project that will combine multiple fields to help Parkinson’s patients beyond medication, known as Empower PD. 

“Empower PD is an initiative I came up with and put in for some grant funding which was awarded through Advance-Clinical and Translational Research (CTR) which is out of Brown University,” Clarkin said.

According to Clarkin, the initiative will be a boot camp-style clinic that will include physical therapy, occupational therapy, speech therapy, nutrition, pharmacy and physiological counseling.

“Parkinson’s is a neurodegenerative disease in the movement category,” Clarkin said. “It involves both our sensory perception of what is going on and the ability to make certain movements.”

While Parkinson’s usually starts off with tremors, it often develops to have more symptoms than that. People with more developed Parkinson’s tend to have problems controlling their body movements as a whole and may become hunched over or shuffle when walking, according to Clarkin.

“With the majority of cases, there is no known cause because it is a whole mixture of different things ranging from genetic predisposition to toxins in our environment,” Clarkin said.

There is currently no cure for the disease and when patients are diagnosed, there are limited resources outside of physicians which can make the process overwhelming.

Dr. Leslie Mahler, professor of communicative disorders, said that Parkinson’s takes a “multidimensional approach” once diagnosed. There are medications available for those with the disease, but she believes there is more that can be done to improve the quality of life for those with the disease. 

Empower PD is currently in the first stage of the process, which includes focus groups and interviews with professionals.

“We are asking the patients what they want, so by the end of this year we have an idea of how to put the group together,” Mahler said.

They are surveying the opinions not only of those diagnosed with Parkinson’s, but people who are affected by the disease on a daily basis, such as families and caregivers. The goal is to create a community so that the journey of diagnosis and care is less overwhelming, Mahler said.

After the research is complete, there would be a mixture of assessment and education to gain a comprehensive plan, according to Clarkin.

“The idea would be that they come in for a half-day and get a comprehensive evaluation from everybody,” Clarkin said. “They would then come back a week later and get half a day of education about all different topics from the diet, exercise, socialization and the trousers that are available within the Rhode Island community.”

The clinics will take place both in Kingston and Providence, but are open to participants from neighboring states as well.

“The goal is to run two clinics in August and September,” Clarkin said. “There will be a ten-person clinic in Kingston and 10 people in Providence.”

The main purpose of the clinic is to create a less overwhelming environment for PD patients, and answering questions about Parkinson’s can lead to patients having a better quality of life, according to Clarkin.

The focus groups will be held on March 25 and April 1 at URI’s Nursing Education Center in Providence and on March 29 and April 8 over Zoom.