Written by Miriam R. Rafferty, DPT
Research scientists at the Shirley Ryan AbilityLab and Northwestern University have spent the last 18 months exploring the exercise experiences of people living with Parkinson’s, with the goal of developing resources to improve exercise sustainment. This project was funded jointly by the Davis Phinney Foundation and the Parkinson’s Foundation.
First, the research team used data from the Parkinson’s Foundation – Parkinson’s Outcome Project to identify patterns in exercise changes over time. In a group of nearly 2000 people with Parkinson’s from around the world, they found that people who increased their exercise by 1.5 hours per week experience benefits in health that were associated with the change in exercise. Similarly, decreasing exercise by 1.5 hours per week is associated with worsening health.
When they used previous data to determine if there is a factor that can predict increased exercise, there was no significant association found. In contrast, there was one big predictor of decreasing exercise. The research team found that individuals had a 3.5 times greater likelihood of decreasing exercise for every additional hour of exercise they do. This relationship was strongest in those with other additional health conditions (comorbidities), people who relied on a regular care partner and people with worse mobility.
This finding shows that even people who exercise a lot may benefit from supportive interventions to help them maintain their regular exercise routine.
The researchers wanted to dig into this finding more deeply by talking to people with Parkinson’s; so, they spoke with 56 people in various stages of Parkinson’s and with different exercise patterns. Many of the participants noted that their exercise fluctuated a lot.
Positive influences of exercise patterns were increasing knowledge about exercise and adapting exercise, choosing to prioritize exercise, social support and environmental factors.
Negative influences of exercise were Parkinson’s-related or other health problems, work and other time commitments and negative environmental factors (weather, transportation and inconvenient classes).
Participants suggested that greater adherence to exercise plans may be influenced by more comprehensive exercise resources such as…
(1) Information about why and how to exercise
(2) Personal guidance from their healthcare team or exercise buddies,
(3) Better local and national resources related to exercise and
(4) Self-management techniques.
Based on the information shared by the participants living with Parkinson’s, the research team worked with a multi-stakeholder panel to develop toolboxes for different groups. The multi-stakeholder panel included people with Parkinson’s, a community exercise professional, a physical therapist, a neurologist, a social worker and representatives from the Davis Phinney Foundation and the Parkinson’s Foundation. The toolboxes are below:
- Toolbox 1: For people with Parkinson’s
- Toolbox 2: For health care providers of people with Parkinson’s
- Toolbox 3: For Parkinson’s community exercise advocates
Want more information on how exercise can help you live well with Parkinson’s?
Here are a few more resources to get you started:
How to Exercise & Live Better with Parkinson’s with Dr. Jay Alberts
Exercise is Medicine for the Brain
High-Intensity Exercise Helps Slow the Progression of Parkinson’s
How a Bicycle Ride Led to Ground-Breaking Parkinson’s Research
Community-Based Cycling Class for Slowing Disease Progression
Brain Training: Effects of Aerobic Exercise in Parkinson’s Disease
The Effect of Forced-Exercise Therapy for Parkinson’s Disease on Motor Cortex Functional Connectivity
Pedaling for Parkinson’s
4-Part Core Strengthening Series for Parkinson’s