Turn, Turn, Turn: The PD Gladiators Story and a Time for Reinvention

Posted On February 16, 2020

I have not posted in this space in over six years, but in my fourth season of reinvention (see sidebar) I’m re-purposing my blog. Now entitled Shaking The Chi, it will serve as an incubator for high impact solutions to complex social problems, with a particular focus on issues effecting people living with Parkinson’s disease (of whom I am one). The blog was initially created in 2011, in connection with the publication of my second novel, King of Paine, but from the beginning I wanted to focus as much on social commentary as on marketing my books. Here’s the opening from my first post, A Warm Welcome, A Mission Statement and the E-Book Revolution:

Welcome to my new blog, which I’m told is a must for all serious authors. Many writers use this venue to plug their books, and I’ll do some of that from time to time, but my intention is to use this space to address current issues in our rapidly changing world. My primary objective in writing fiction is to entertain, but I believe fiction is also an excellent medium for conveying ideas. A blog may be even more efficient if it can attract the attention of like-minded readers and has the advantage of being a two-way street. I’d love to hear what you think, too. Feel free to comment at length, whether you agree or disagree.

A subsequent post addresses how I wove social themes into my suspense novels, The Jinx and King of Paine. Many of my early posts devoted to political commentary, including Wealth Redistribution, the Law of the Jungle & Seeds of Revolution, also remain timely and approach issues that divide us in a fresh way. While my views are generally progressive, I’m rational and open-minded. There are many issues on which reasonable people can disagree on a principled basis, but it frustrates me when our society is shaped by denial of fact and irrational partisanship. I hope some of you will go back and comment on my Wealth Redistribution post to start a principled conversation about the 2020 presidential race… I want to keep the conversation friendly but don’t want to avoid topics that even friends seem hesitant to broach on social media in these partisan days.

I have also started filling the gaps from my six-year absence from this blog because the latest version of me is perhaps the most interesting and supports my bona fides as a problem-solver worth engaging. My “chi”–the circulating life energy Chinese philosophers believe inherent in all things–was shaken (pardon the pun!) by my Parkinson’s disease diagnosis, but I continued to promote King of Paine on here, research my third novel, blog about the 2012 presidential election (one of the blog’s highlights was a post that may have led to the downfall of Herman Cain’s ill-advised campaign!), and reflect on some deeply personal thoughts inspired by my looming battle with PD. Posts can be viewed by category using the widget below the “About” sidebar on the right.

The PD Gladiators Story

After a couple of years of denial/apathy, I dropped my novel-in-progress and reinvented myself as a Parkinson’s advocate, organizing (with my wife, Ellie) PD Gladiators, a nonprofit that mounted a nationwide campaign to fight back against the disease with vigorous exercise based on emerging research that doctors were slow to discover. My writing became devoted to that cause, and several of my essays first posted on the PD Gladiators blog are re-posted here, with some additional editorial content clearly marked.

I tend to be a pragmatic sort prone to overdoing the passion thing when inspired, so denial and apathy are difficult to admit. But the news I heard from my doctors was not inspiring at all. When I was diagnosed with Parkinson’s in 2010, my neurologist (now retired) told me there was nothing I could do to slow down an inevitable slide into disability. It was a death sentence. So I simply (apathetically?) went about the business of researching my third novel for over a year until I crossed paths with others (including Tricia Creel, Becky Farley, Bob Wells and Doris Williams) who were touting a curiously overlooked goldmine of scientific research suggesting vigorous exercise could help slow the progression of PD.

They saved my life.

After immersing myself in the research and experiencing the impact of exercise myself, Ellie and I began brainstorming with other believers (Steve Haas, Kimberly Rodriguez, Andy Friede, Gil and Gina Kim, Prasant Desai, John Dixon) about how to effectively spread the gospel of exercise and hope.  (I will devote a future post to detailing the hard work and collaboration of other individuals which created the “perfect storm” for the dramatic change in the Atlanta Parkinson’s community that ensued.) Inspired by renewed passion (and unable to convince the local chapters of the national Parkinson’s advocacy organizations to act), we formed PD Gladiators in 2013, a nonprofit charged with developing a plan to ally metro Atlanta fitness instructors and clinicians to convince people with PD to take a proactive approach to managing their disease.

PD Gladiators entered agreements with the Atlanta YMCA (Kristin McEwen), Livramento Delgado Boxing Foundation (retired boxer Paul Delgado), Yellow River Center (Bob Wells, Doris Williams and Ferah Withrow) and other independent fitness instructors (most notably, Kimberly Rodriguez, one of our initial directors) to build a network of PD-specific exercise classes based on PD Gladiators’ promise to promote the exercise research and the PD Gladiators Fitness Network to local clinicians to create the referral “pipeline” necessary to make the adapted fitness programs sustainable. I believe recruiting the support of influential clinicians in our community from the start was the critical insight that has led to the phenomenal growth of the Network. See If We Build It, Will They Come, Part I and Part II. Link to Part I and Link to Part II We were able to get their attention because we created a single point of contact for the clinicians to deal with in the fitness community–they could have a brief but impactful conversation with each patient about exercise, then hand them our brochure and let us guide them to appropriate programs adapted for people with PD by instructors who had taken an approved training course (in Atlanta, primarily MDT Education Solutions–Madeleine Hackney, Doherty Riebesell and Tricia Creel).

By 2018, the Network consisted of over 60 weekly classes, and metro Atlanta “gladiators” logged almost 25,000 class visits for the year! Because the Atlanta YMCA included 17 of their 18 branches in the PD Gladiators at the Y program, we were able to make PD-specific programming available across the expansive Atlanta metro area. The involvement of Jorge Juncos, MD, and Amy Morse, DPT, helped bring the Emory Brain Health Center (Atlanta’s largest PD practice by far) on board, and early fans like Barry McCasland, MD, Stephanie Riemann, MD, and Gavin Brown, MD, kept the program growing. These clinicians were thrilled because there was a clear divide between patients who participated in the PD Gladiators network and those who remained sedentary–our gladiators were happier and progressing more slowly. Ellie was instrumental in developing our clinical outreach program, and Lloyd Spann, a retired KPMG project manager, has revamped the process over the last two years.

While the results were rewarding, by the end of the second year it became clear that Ellie and I had taken on too much. Promoting the network to people with PD and clinicians, guiding newly hopeful patients to appropriate classes, trying to keep everyone inspired with our newsletter, maintaining our database and website (a one-stop shop with up-to-date schedule and class info), recruiting and contracting with fitness instructors, managing volunteers, helping Paul Delgado run his foundation’s boxing program (the most popular program in the Network), fundraising and other administrative duties were all time-consuming, stressful and exhausting, even with the help of some excellent directors and volunteers over the years. We had discussions with both the APDA and the NPF about merging (or partnering with both of them), but our time frame for action was much shorter than theirs.

Desperate for help but unwilling to abandon a program that meant so much to so many, we invested time and resources developing a sustainability plan with a nonprofit advisor, Dolph Ward Goldenburg. It took another year to raise the funds to hire a part-time manager, and several more months to find the right person who could pivot into a full-time executive director after another year of on-the-job training. But the Fates delivered us an angel in the person of Annie Long, who immediately began to professionalize our operations, and a fresh Board of Directors brought renewed energy.

At the same time as we were preparing Annie to take the management lead, we were (with Annie’s knowledge) pursuing negotiations with the Parkinson’s Foundation, and on August 1, 2018, PD Gladiators’ network operations were transferred to the Foundation. Ellie and I served on the Advisory Board for the Parkinson’s Foundation Georgia–a newly-created chapter–until retiring in October 2019. Annie Long continues to manage and grow the Network as an employee of the Parkinson’s Foundation. We hope the inspirations, successes and failures of our venture will influence future efforts to make safe and effective fitness programs adapted for people with PD available everywhere, and we remain available to the Parkinson’s Foundation as a resource if we can be helpful.

Ellie and I still practice the proactive, hopeful approach that we preach. With Ellie’s loving support, I exercise daily, eat a nutritious diet supplemented as recommended by Dr. Laurie Mischley (a Parkinson’s researcher and naturopathic doctor practicing in Seattle), and have adopted good sleep habits. While excited to begin the retirement we had deferred to nurture PD Gladiators, I intend to devote some of my energy–without stress and deadlines–to brainstorm ideas for other areas of Parkinson’s care in need of intervention  for consideration by government and charitable organizations with the mission and resources to undertake these projects, as well as return to thinking about the broader social issues that define our times.

On the Parkinson’s front, two issues are on my mind. First, a few friends and social media acquaintances are struggling with the problems of facing disability without a care partner. I’d like to explore options available to them and think about new alternative living/care arrangements that could be devised to improve their quality of life as their disease progresses. Second, many people with PD desire to travel, both within the U.S. and internationally. I have seen a few articles about travel with PD, but I think there’s a need for comprehensive guidance on how to handle medical emergencies abroad (particularly when you aren’t fluent in the local language or knowledgeable about the quality of local facilities), medical insurance (Medicare and most private insurance offer limited or no coverage abroad), and day-to-day planning when your symptoms are unpredictable and may make it difficult to keep up with others.

Please feel free to share any ideas regarding the above or let me know if you see other priorities you’d like to think about with me! I’ll be here “shaking the chi.”

Larry

People who cannot invent and reinvent themselves must be content with borrowed postures, secondhand ideas, fitting in instead of standing out. Warren Bennis