Physical activity can improve Parkinson’s symptoms — balance, mood and memory changes, to name a few — and some studies show it may slow disease progression. But, for varied complex reasons, many people with Parkinson’s do not follow a regular exercise routine.

Occupational therapist Katrina Long, EdD, MS, is addressing some of those reasons with a client-centered program funded by The Michael J. Fox Foundation (MJFF) and the American Occupational Therapy Foundation (AOTF). Long’s project was selected through a funding program announced by the partners in 2020. We talked with Dr. Long, assistant professor of occupational therapy at San Jose State University, about her study and its goals.

MJFF/AOTF: Congratulations on your award and thank you for this important work. Please tell us about your study.

Long: Thank you! Studies show how exercise benefits the body and the brain. But we also see that people with Parkinson’s decline in their physical activity compared to other adults their age, even before changes in gait and stability. This could be due to, among other factors, issues of motivation and lack of knowledge and support.

This program creates a paradigm shift from exercise being a matter of compliance — "this is what you have to do” — to adherence, where a person is exercising because they see the value in it.

MJFF/AOTF: So, changing the way we look at exercise to encourage physical activity.

Long: That’s right. The participants meet with an occupational therapist to set goals for their fitness across the domains of exercise: aerobic, strength, balance training and stretching. We discuss needs and motivation with the client: Where do they feel they’d like to improve? Do they respond to more extrinsic motivation like getting an award or to intrinsic motivation such as feeling good about helping their wellness. These conversations help participants pick the types of exercise and set personal goals. In addition, we focus on identifying barriers and supports to their exercise engagement and working collaboratively to create a plan that enables success in their goals. This client-centered approach makes them more likely to follow through.

Often after diagnosis some people with Parkinson’s can have a negative outlook on their future selves and abilities, which may affect their current behavior and engagement. An important part of the intervention is providing role models or examples of people living with PD. Each participant also receives the Engage-PD Workbook that provides disease-specific information alongside encouraging quotes and images from people living with PD.

In addition, the participants wear a Fitbit that gives them real-time data on their activity. They can report back to the therapist and can see their progress. This feedback, in addition to the positive role-modeling, helps to support their exercise self-efficacy, which is their belief in their ability to accomplish their goals.

This program is based on my dissertation pilot study, called Pre-Active-PD, that I completed at Columbia University under Dr. Lori Quinn in the Neurorehabilitation Research Lab.

MJFF/AOTF: How are you measuring progress toward the goals the clients set?

Long: At the start of the study, participants will wear an ActiGraph, a wearable device that measures physical activity. They will wear it for one week to capture their physical activity levels. Then at the end of the four-month study they will wear it for another week to look for changes in activity.

They also will complete questionnaires on their physical activity behaviors to complement the wearables output. In an earlier pilot we saw that there was an increase in planned physical activity.

MJFF/AOTF: Is there a control group to assess how effective these strategies may be?

Long: We are recruiting 50 people for the study. Half will receive the intervention. The other 25 will still have visits with an occupational therapist but will receive exercise education without goal setting or feedback through the Fitbit. We will compare the activity of each group to evaluate the impact of our intervention.

MJFF/AOTF: Part of your funding application was around engaging underrepresented populations. Can you share more on those plans?

Long: There is a gap in service provisions to underrepresented populations and in research with volunteers from these communities. For these reasons, we are prioritizing outreach toward an inclusive study cohort.

We are recruiting around San Jose, California and in New York City, at Columbia University’s Neurorehabilitation Research Lab. In New York, we have been working with our multidisciplinary team on community engagement in the Harlem and Washington Heights neighborhoods, and hope to recruit individuals from the Latinx and Black and African American communities.

A therapist on our team speaks Spanish, and we have translated the workbook that we share with participants into Spanish as well.

MJFF/AOTF: You are recruiting at those locations, but the visits are virtual.

Long: Correct. Our therapists will be using telehealth visits to meet with the participants. We understand that means that participants will need to have access to the Internet, but we hope not having to come into the clinic will help with recruitment and compliance. I am planning to have tablets and hot spots available for participants who do not have the technology supports to participate.

We are only recruiting close to the sites, though, due to licensing and share of data with local neurologists. We hope to open the program more broadly in the future.

MJFF/AOTF: When people think of occupational therapy, a project like this may not be the type of work that comes to mind. Can you tell us more about the different roles those in your field can play for people with Parkinson’s disease?

Long: Typically, referrals for occupational therapy come late in Parkinson’s disease stage to address issues with activities of daily living (ADLs) such as dressing, personal hygiene and functional mobility. Occupational therapists also address activities to support daily life within the home and community, which we call Instrumental Activities of Daily Living (IADLs). IADLs include communication management and home management, for example.

This program has a particular focus on health management, which includes activities related to developing, managing, and maintaining health and wellness routines. This includes symptom and condition management, emotional health, communication with the health care system, medication management, nutrition management, and physical activity.

It’s important that people with Parkinson’s are able to express their needs and have access to resources and supports within the health care system. The best approach to treating Parkinson’s is a collaborative interdisciplinary team.  I believe interventions that target health management early in the disease can help people with Parkinson’s establish health promoting habits routines that last a lifetime.

MJFF/AOTF: Thanks for your time and again for this important work, Katrina. We’ll be following along closely!

Stay tuned for more information on when this study opens recruitment and, in the future, its results.

Read more on the role of occupational therapy for people with Parkinson’s disease.