The data are clear: exercise helps people with Parkinson’s disease. “Not only is exercise good for you but it slows the progression of disability,” says Terry Ellis, a Boston University Sargent College of Health & Rehabilitation Sciences associate professor and director of the Center for Neurorehabilitation. “It may even slow progression of the disease.”
But exercise is hard. It requires physical ability and daily motivation. “It’s not like just taking a pill,” says Ellis, chair of the physical therapy and athletic training department, who is joined by researchers at Washington University in St. Louis to study the use of an mHealth (mobile health) app to help-and even inspire-people with Parkinson’s to exercise.
Based on the success of a one-year pilot study, Ellis and her colleagues recently received a five-year, $3.2 million NIH R01 grant to continue their work. They will follow the progress of 200 people with Parkinson’s engaged in physical therapy and who begin exercise regimens. “We’re trying to help people make exercise part of their everyday life,” Ellis says. The model of care she’s suggesting is like dental health: you see your dentist twice a year, but you also need to brush your teeth every day.
Here’s how Ellis’ treatment works: Participants begin with a series of face-to-face sessions with a physical therapist and receive a personalized set of exercises and a walking regimen to follow at home. The therapist films them doing the exercises, then creates videos with customized advice-all of which will be available in the app.
In between sessions, participants open the app on a tablet or phone to review their daily workout, receive personalized advice, and communicate with their physical therapists. They also respond to questionnaires, grading their progress and rating the ease or difficulty of the exercises. And, says Ellis, the therapists can adjust the workouts based on this information. Even in the months between in-person sessions, “You know somebody cares about what you’re doing,” she says.
The treatment works. In the one-year pilot study, participants walked, on average, 10 percent more than baseline, compared with a 12 percent decrease Ellis found in previous studies. But, she says, “We noticed that not everybody improved.” Participants dealing with negative thoughts more frequently failed to reach their goals, she says.
That’s where Ellis’ colleague, Dan Fulford, comes in. Fulford, a psychologist and a Sargent assistant professor of occupational therapy, helped design cognitive behavioral elements for therapists to use in person and then for patients to use on the mHealth app. “The goal is to help people identify thoughts that might interfere with their walking or other exercises,” Fulford says. That meant training physical therapists in some of the techniques of clinical psychology and designing elements of the app to positively modify behavior.
Those elements include the questionnaires, which create a sense of accountability, and a display showing the participant’s goal, providing a constant reminder of how exercise will benefit them. These goals can range from “I want to be able to travel the world” to “I want to walk my daughter down the aisle.” Users also receive feedback for tasks completed-the sort of visual validation people with Fitbits and other fitness trackers get. The aim is to help more participants stick to their regimen. “It’s the cognitive behavioral piece that we think is kind of the secret sauce for our patients who struggle the most,” Ellis says.
The study’s impact could be far-reaching. “What I hope is that we can change standard practice so that patients with Parkinson’s, when they’re diagnosed, are routinely sent to a physical therapist-and they see them every six months, just like their neurologist,” Ellis says. Beyond that, she thinks the results could even change the way chronic diseases, from arthritis to diabetes, are treated.
“Exercise is a powerful, effective treatment-and underutilized,” she says. “We just need the data to drive policy change.”