“Who were those people? Talking some garbage about self immolation.”
“No, dude, self-efficacy not self-immolation, as in the ‘confidence a person has in his or her ability to influence an outcome or be successful in achieving a result. Self-efficacy beliefs determine how people think, feel and motivate themselves.’” (Fictionalized Hotel staff Hyatt Regency Tech Center, Denver, May 14, 2016. The wonderful cartoon accompaniment below is by my Parkie Pal Laura Crawford.)
How about that retired Philadelphia-area organizational development consultant in attendance. After his Parkinson’s diagnosis, he mysteriously (to himself) found the capacity to become an accomplished folk painter and soon-to-published poet.
And the buttoned-up, retired Richmond, VA dentist who raises buckets of money for Parkinson’s research and the Parkinson’s Disease Foundation (PDF).
Or the light-up-the-room, former pediatric office manager from Denver.
Not to mention the research coordinator named, would you believe it, Chi Chi.
And the wisecracking, not so retired former newspaper editor and college professor (me).
That’s a taste of the 20 Parkies and their study partners who met to train-as-trainers for a PDF program named PD SELF. The program’s author is an extraordinary Parkie, Diane Cook, a Denver training expert.
We left the 2½ day training stoked to recruit in our eight communities from 10 to 18 newly diagnosed Parkies and their care partners, locate the right meeting spot, and get the word out to the community about this dynamite opportunity.
In the process, we had become a cadre of ground troops convinced of this truth about PD: “I didn’t choose to have PD, but I can choose how I respond to it. It does not define me. I am much more than a person with PD.” Those words are a paraphrase of the Michael J. Fox message, courtesy of the Philadelphia Parkie, poet and folk artist John Creveling.
The training showed clearly that all of us had already demonstrated self-efficacy practices in our PD and related work. We had some differences of opinion about how to conceptualize and describe the training we would lead, but we were rowing together on the cornerstone ideas.
The modules of the program made perfect sense to us. They include: your healthcare team, medications and treatments, physical therapy and exercise, non-motor symptoms, integrative medicine, neuroplasticity, relationships/intimacy/care partners, plus how to get involved in research and clinical trials.
My major takeaway from the training was how commonsensical the program is and how fulfilling it will be to share this meticulous, beautifully crafted effort with newby Parkies.
The training teams are from eight communities: Denver, Boulder, Phoenix, Houston, Detroit, Philadelphia, Richmond, and, of course, Tampa, my home.
When I applied for the program, I wrote this: “My passion in my PD work is to help close the gap of support that exists after a person is diagnosed and the final outcome of their disease. That’s where the helpline comes in and my efforts to reach the newly diagnosed with authoritative, actionable and understandable information. The self-efficacy training program fits perfectly into the sweet spot of my interests and abilities.”
(The helpline I referred to was my so-far-unrealized effort to supplement National PD help lines with a local one for Tampa. But just wait. I haven’t given up on the idea. God will provide a way.)
My Tampa training partner for PD SELF is Sherry Harlan, a veteran University of South Florida Health administrator. Her organizational rigor nicely compliments my often-puzzling abstract and conceptual thinking.
Sherry and I have already covered some important ground in establishing the program we will begin in September. We have a meeting Place, the Portico, the downtown community space operated by my Hyde Park United Methodist Church. We have a dozen or so early expressions of interest from my compatriots in Rock Steady Boxing and high-intensity cycling programs. We have written a FAQ, which we will share with potential participants.
I commit to writing more in this space about PD SELF as it unfolds in the eight test communities. Stay tuned.