Tonight, our ample home will be filled with 50 or more people connected to Parkinson’s disease in the Tampa Bay Area. Sad stories not allowed entry. We will have a grand time plotting a counter offensive to this stealthy and frustrating neurological disorder.
There will be people with Parkinson’s (Parkies is my favorite identifier for the approximately 1,000,000 Parkinson’s sufferers in the U.S.) There will be care partners, medical providers and sponsors of a very powerful learning and action program to harness and bend PD’s course. The program is called PD SELF.
It will engage the 21 recently diagnosed Parkies (fewer than three years) and their care partners for the next nine months. They will graduate with the knowledge and tools to build their personal health care team. Lying at the heart of the program is the vital notion of hope in the face of an incurable neurological disease
The Parkinson’s Disease Foundation explains the background of the program this way:
“Many people are handed a diagnosis with very little guidance on what to do next. But the diagnosis is life changing. Facing life with a chronic progressive disease means facing changes to health, relationships, family life, employment and finances.
“Research tells us that when people are given the resources to cope with these changes, they are empowered to take an active role in managing PD, leading to better health and quality of life.
“PD SELF (Self-Efficacy Learning Forum) is an innovative disease management program that offers this approach. It was developed in 2013 by Diane Cook as part of a clinical trial sponsored by the Colorado Neurological Institute.
“Based on the psychosocial theory of self-efficacy, PD SELF helps people newly diagnosed with PD to create a personalized approach to managing their disease.
Self-efficacy is 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. It is increasingly used in health care for its effectiveness in helping people to adopt healthier behaviors.”
I am privileged to be a co-facilitator of the Tampa training along with Sherry Harland of the USF Health group. Our site was chosen in competition with other cities and is one of eight around the country undertaking the program this year.
I recently wrote participants about my personal experiences related to this undertaking.
I did it in a rather idiosyncratic manner because I’m a bit idiosyncratic myself, perhaps eccentric.
My email to them described my background in college (Duke) and graduate school (Cornell University Medical College).
I started as a “play-by-the rules, color-inside -the-lines, please-your-parents, overachiever.”
Then came the Big Problem: I had a medical aptitude and a public-affairs aptitude, in about equal doses. (History major and pre med.) So I went to med school, passed my first two years, and then …..drum roll……my whole being said STOP!
Medical book learning was OK. I passed my first two years. But I hated the hands-on stuff; I liked my freelance writing a lot better.
I stopped formal MD traning. I did two more years at Cornell in medical research. I was making time to deal with my family conflicts.
Drilled into me at home had been this nasty: “To be a man is to be a doctor.”
Oh so wrong-headed and dangeous.
A skilled therapist helped me light the dawn. I left the medical bosom and pivoted to news reporting. (I had prepared for that AP job in a very odd and expensive way. I ultimately became probably the only newspaper editor of my generation to train for journalism in med school.)
My lesson learned, applicable to Self Efficacy and PD: Sometimes powerful forces within us prevent us from recognizing a change of course we must make to manage a stunning new problem e.g. a diagnosis of Parkinson’s.
I used teambuilding and self empowerment practices to develop the news organizations I lead. My staffs said that they liked coming to work to produce a paper customers would want to read
In fact, I was fashioning self-efficacy tools when such a concept, if specifically named, might face derision from world-weary and skeptical journalists.
Final thought I gave the Selfies about me: Since my early buttoned-down day, I have become an impassioned advocate for enterprises that bring out the best in people, nurture smart risk-taking and havetheir eye on the future.
That’s you newsroom of the future. (Tampa’s before-its-time News Center)
That’s you urban church of the future, (The Portico, our downtown meeting place.)
That’s you Parkies who create new support, empowerment and accountability forums.
What made me a creative editor, in turn, made me an effective college teacher. The tools for both used the collaborative approaches of PD SELF.
My lived beliefs and values– sharpened by my PD experiences– are these: Face the truth. Call it by its right name. Speak truth to power and live authentically. Nuke passive aggression. Embrace hope. Check your fears at the door. Make God’s Love Real. Every day, live in the “Now” and have laughter ring in your voice.