From Apathy to Advocate: My Radio Interview with National Parkinson Foundation President Joyce Oberdorf on Health South Connect

The National Parkinson Foundation leadership was in Atlanta recently to host their Centers of Excellence Leadership Conference, and I was honored to join their President, Joyce Oberdorf, for an interview with CW Hall and Diana Keough on their Health South Connect show. Click on the following link to listen to the full interview, which delves into all the great things the NPF does for people with Parkinson’s disease but focuses on how they helped PD Gladiators form our Metro Atlanta Fitness Network, which now offers over 40 group exercise classes a week adapted for people with PD: Health South Connect Radio Interview

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Joyce Oberdorf and Larry Kahn

The interview was a comfortable one, with Joyce and our hosts being down-to-earth people and easy to talk to. It was a particularly easy conversation for me because three particular contacts with the NPF have changed the way I live with PD–from apathy to advocate–and I was eager to share their good works with others.

There are several excellent websites developed by the PD support organizations, but the NPF’s website is the most widely-read, and it happened to be the one my wife, Ellie, kept returning to for information during the year and a half after my diagnosis while I kept living my life as if nothing had changed. I did that not because I was foolish but because my doctors told me there was nothing I could do to alter the progression of my PD, and I didn’t want to waste any of my now precious time grasping at straws. But Ellie read and sent away for information from the NPF and read some more and finally convinced me to go to a local support group meeting because she thought there were some things we could do. By some stroke of good fortune, that support group meeting was my gateway into the emerging neuroscience that suggests vigorous and varied exercise may slow the progression of PD. It was the first time I had any sense that I could take back some control over my disease and, control freak that I am, I seized upon that straw and have not let go since. It has become my mission to help other newly-diagnosed PD patients learn from day one that the sooner and harder they start exercising, the better their chances of slowing the demise of those dopamine-producing neurons that keep us moving smoothly.

The second time the NPF affected the course of my treatment was my discovery of the “Ask the Doctor” forum run by their Medical Director, Dr. Michael Okun. I have always been a reluctant medicator, and I agonized over the decision to start taking anti-Parkinson’s drugs. I have blogged about this decision on my author page (“The Great Reservoir of Unfinished Business”), but the greatest resource I found was Dr. Okun’s forum because I could ask questions and follow-up questions, and he would never fail to answer them within a day or two. Finally, he digitally yelled at me that I was under-medicated and convinced me to get the little yellow pills that keep me from shaking all day long. Those pills probably allow me to exercise as actively as I do. I had the pleasure of meeting Dr. Okun while he was in Atlanta for the conference and thanked him personally. He confirmed he really does answer all those questions himself and believes that these thousands of contacts with PD patients through the forum give him a more complete picture of what we are experiencing than he would get simply from his regular practice. Very smart man.

The third time the NPF came to my rescue was last year, when they awarded PD Gladiators $15,000 in Moving Day grants to create and promote the PD Gladiators Metro Atlanta Fitness Network (plus $5,000 to Livramento Delgado Boxing Foundation, which operates our signature boxing training program). Ellie and I and the rest of our wonderful Board of Directors had devised a strategic plan to create a wide network of group exercise programs across the Atlanta metro area taught by independent fitness instructors, subsidize them, and promote the network to practicing neurologists along with the emerging neuroscience about the benefits of exercise that seemed to be stuck in the Ivory Tower. The announcement of the Moving Day grant program actually worked against our plan because it favored numerous small grants that could have fragmented the exercise community where our plan relied on organizing the programs and speaking as one voice to the medical community.

We didn’t expect a bureaucracy to be flexible, but we asked the NPF if there was any way they could work with us. We presented our strategic plan and, to our surprise, they gave us the opportunity to apply for the whole plan if we broke it into separate applications of no more than $5,000 each. Their independent grant review committee awarded us enough funding to get the Network off the ground, and we were able to leverage that funding with other sponsorships and a community partnership with the YMCA of Metro Atlanta, creating a coalition of sorts with a number of very credible players. Within six months, the Network has reached a size (40+ classes all across the metro area) that has enough heft and credibility to grab the medical community’s attention. Our newest Director, Dr. Jorge Juncos, an Associate Professor of Neurology at the Emory School of Medicine and a practicing movement disorders specialist at The Emory Clinic, the largest Parkinson’s practice in the U.S., will be delivering a presentation on the benefits of exercise in PD to the annual meeting of the Georgia Neurological Society this weekend, and PD Gladiators will be among the few exhibitors at the meeting. We still have much work to do to spread the word that “exercise equals hope,” but the NPF’s flexibility and generosity allowed us to bring a vital service to our community.

So, thank you Joyce, Leilani, Annie, Laura and all of your colleagues at the NPF who do so much to help people with Parkinson’s live better with their disease. Thank you for helping me.

 

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