PD SELF was founded in 2013 by Parkinson’s patient Diane Cook. Here are the excerpts from an interview with Cook when asked how she came to develop the program.
“The idea began for me at the 2nd World Parkinson’s Congress in Glasgow, Scotland. Lisa Shulman, M.D., gave a talk in which she said that self-efficacy was the most important determinant of quality of life in people with PD.
That talk changed my life. The question I asked myself was, if this is the case, can we teach self-efficacy? Answering that question led me to the work of Dr. Albert Bandura, a social psychologist from Stanford University who first developed the theory of self-efficacy.
I researched the topic for a year before putting together a curriculum and bringing my idea to my movement disorders specialist. Together we designed and conducted a small clinical trial to evaluate whether the program improved quality of life as well as physical and psychosocial functioning in newly diagnosed Parkinson’s patients over the 8-month period of the intervention and at 1-year follow-up.
The results were very positive. At the 1-year follow-up, while physical functioning continued to worsen, hope, anxiety, sleep and aspects of self-efficacy (e.g., ability to manage the disease) significantly improved. At the 4-year follow-up, despite continued decline in physical functioning, a number of psychosocial variables, including stress, anxiety, depression, and intrusiveness of illness improved. We also found that it helped people become active in the PD community, for example by participating in clinical trials.
These results suggested that introducing, modeling and supporting self-efficacy enhancing skills and behaviors contribute to improved psychosocial functioning and quality of life and that these results can be sustained over time.
PD SELF is very appreciative of the Parkinson's Foundation for its support through our pilot phase which led to the expansion to 16 sites across the country.
So, that’s how we came to be and now, in 2019, over 1,000 people have graduated from the PD SELF program."