Parkinson’s patients find their voices through ECU student partnership
In the world of higher learning, interprofessional education is changing the way healthcare professionals are prepared to care for their patients. At East Carolina University’s College of Allied Health Sciences, students working together across disciplines has been part of the college’s culture for so long it’s become second nature.
In the spring semester, students and their faculty mentors — Dr. Lauren Turbeville, an assistant professor of occupational therapy, and Sheri Winslow, a clinical assistant professor from the Department of Communication Sciences and Disorders — developed a program called Communication Confidence, which brought together people with Parkinson’s disease, their caregivers, and ECU students and faculty members to work on persistent problems as the disease progresses: difficulty speaking and writing.
Participants met once a week for eight weeks. During those meetings, they practiced handwriting skills and public speaking, and were given homework exercises to reinforce their class work.
The patients weren’t the only ones who had work to do. Their caregivers, family and friends had their own separate meetings that were initially intended as fun activities. Organizers soon learned the true benefit for caregivers was simply sharing their joys and concerns with others who could relate.
At the program’s conclusion, the participants held a sort of graduation. Patients were tasked with creating a vision board that they used as a cue to describe their lives, loves and hobbies. Patients were seated at small tables while students from across the college’s eight program areas were invited to interact with patients who were proud to show their progress with speaking and writing.
Hope for Patients
Patients were recruited for the program mostly through word of mouth. The need for solutions for Parkinson’s patients in rural eastern North Carolina is urgent, and families leverage every opportunity they can find.
Faculty and students listen as a Communication Confidence program member describes the images on a poster used to help with spoken communication skills.
At the outset, patients were given a pre-assessment and self-assessment of their facility with speaking and writing. With Parkinson’s, speech often becomes soft and unclear, and writing tends toward micrographia, letters become small and hard for others to read. Post-assessments are scheduled in the coming months, which will be part of research that the students are working on.
Terry Leatherwood and her husband Jerry traveled from Kinston each week to participate. Jerry’s disease progression had rendered his speech low and sometimes hard to hear. Terry said his handwriting had gotten small and illegible, which she said is heartbreaking because his daughter hadn’t received a letter from him in a long time.
“He used to sign all the birthday cards,” Terry said. “He wrote his daughter a letter a couple weeks ago, and if it hadn’t been for this class, he wouldn’t have done that.”
Terry Leatherwood beamed watching her husband interact with the students. In recent years he has withdrawn and hardly speaks unless spoken to. With the addition of physical therapy, he is now willing to tackle simple tasks like putting his socks on along with speaking to those around him with greater confidence.
“These young ladies, they love him and they love every one of them. They love what they do. They’re just wonderful, wonderful people,” Terry said.
Another participant, Alma Gladson, was born in Pitt County and lived most of her life in Edgecombe County. She worked at the various incarnations of ECU Health Medical Center in laboratories before advancing to be a leader in electronic health records.
The speech and handwriting program reinforced in her the importance of exercise and trying to keep up with tasks like handwriting. Before she was diagnosed with Parkinson’s, she was already exhibiting signs of micrographia.
The community of other patients and their caregivers was important, Gladson said, as was interacting with the occupational therapy and speech students.
“It’s been nice to meet these people. They are very dedicated to helping,” Gladson said.
Student Education
Research is a main focus of the program, but was made tangential to the weekly fun and community-building activities like creating stories together. The main research question faculty and students want to answer is if the speaking and handwriting exercises improved both forms of communication.
Last year, Middlesex native Kelsey Arnold participated in research that resulted from experience with caregiver burden. That research will continue with the caregivers from this program with a post-study assessment that asks questions of them about their mental health following their involvement in the program.
Jerry Leatherwood, a Communication Confidence program member, speaks with a College of Allied Health Sciences student during a celebration of the participant’s successes in written and spoken communications.
“Last year there was another caregiver group hosted alongside the Parkinson’s research project that specifically looked at addressing caregiver burden. This year’s research group acknowledged the role of the caregiver, this time focusing on leisure and self-care activities to help these individuals find themselves again apart from the role of caregiver,” Arnold said.
Madison Sellers, an OT student from Hickory, was a part of the handwriting assessment and treatment team. Her goal was to get participants to think about producing bigger handwritten letters to overcome their micrographia. She helped introduce participants to new ways of using strength and posture to make their writing more legible. Adding adaptive handwriting tools like weighted pens and ergonomic grips, along with visual guides, made a difference, she said.
“We tried to make the interventions fun and relate back to everyday activities so they can maintain their handwriting skills. The older generation cherishes handwritten notes and cards, or even the ability to write a check, so we made sure our interventions were meaningful,” Sellers said.
Sellers said the program offered her a first experience with Parkinson’s patients, and she was amazed at their resilience, their stories and the progress they were able to make with handwriting.
“From week one to week eight, the changes were crazy. Amplitude and legibility-wise, the letters were bigger and wider, easier to read,” Sellers said.
Students from CAHS’s different programs see each other around campus, but Sellers believes the interprofessional collaboration has benefited her peers, and she hopes the speech students as well.
“Partnering with the speech students was informative. We learned a lot about the other profession in regard to Parkinson’s. The speech students were amazing to work with and made this experience so fun,” Sellers said.
Helping the Helpers
Organizers said one of the most important parts of the program was finding ways to support the family and friends who are devoted in their support of the program’s participants.
Two College of Allied Health Sciences students listen as Jerry Leatherwood practices the speech skills he’s worked on during the Communication Confidence program.
“We focused on prioritizing the caregivers’ mental health and making sure that they had space to do things that they enjoyed. A lot of times they feel that they lose themselves in being what they need for the person they are caring for,” Arnold said.
Terry Leatherwood said being in a room with others who support Parkinson’s patients has been a blessing. She has few other people in her life who can really understand the struggles of being constantly relied upon.
“My friends don’t understand. Here, I’m with other people who have been through it, and they have really helped me relax and be more vocal so I can get information,” Terry said. “I wouldn’t have had that experience if it hadn’t been for these ladies.”
ECU student Kaylee Herbst, from Hillsborough, was also part of the caregiver support group. She said it was important to help the caregivers redefine who they are through the disease progress of their loved ones.
Likely the most important thing the students did was afford the caregivers space to talk.
“They didn’t need to be engaged with an activity constantly. The fact that they could vent and share, and have people beside them that were going through a similar experience was a benefit,” Herbst said.
Herbst said she hopes to carry the empathy and new perspectives the program has afforded her after graduation.
“It was eye-opening as students to walk alongside the patients and caregivers. Hopefully we can bring that into our care later on as practitioners,” Herbst said.