Meet Larry Kahn of PD Gladiators

Today we’d like to introduce you to Larry Kahn.

Thanks for sharing your story with us Larry Kahn. So, let’s start at the beginning and we can move on from there.
After a 20-year career as an attorney and five years as a novelist, I was diagnosed with Parkinson’s disease at age 50. PD is a progressive, debilitating neurological disease that has no cure. My neurologist told me there was nothing that could be done to slow the inevitable physical decline, although pharmaceuticals were available to relieve symptoms when they became too uncomfortable.

About a year and a half later, I joined a local support group and heard from different guest speakers that various forms of exercise could slow the progression of PD. I read the scientific research and began a vigorous and varied exercise routine. And within a few weeks, my symptoms improved. I asked around at support group meetings and on social media and discovered that few neurologists were advising their patients to exercise.

I showed my new neurologist a review of the scientific evidence published in a prestigious journal, and he was unfamiliar with this new research but was intrigued. I figured that somebody had to clue the neurologists into these studies because a million people diagnosed with PD in the US were losing dopamine-producing neurons every day they didn’t exercise. I tried to convince the national Parkinson’s charities with a local presence to undertake the task, but they were not staffed to handle an endeavor that big.

Meanwhile, two local physical therapists formed a few PD-specific exercise classes and tried to spread the word about the benefits of exercise by visiting local support groups. They met with some interest, but the classes were not very big and when participants dropped out, there was nobody recruiting to replace them.

In mid-2013 my wife, Ellie, and I were convinced that the key to spreading the word about exercise and PD was to find a way to convince neurologists to recommend exercise to their patients and to provide a place that offered safe and effective, a PD-specific exercise that gave those doctors a place to recommend. We recruited a few like-minded members of the community to figure out how to do that, and in January 2014, PD Gladiators was born.

Overall, has it been relatively smooth? If not, what were some of the struggles along the way?
The biggest obstacle we faced was credibility. Doctors are not known as a group that takes kindly to advise from their patients. We also needed funding to create brochures and provide independent fitness instructors with subsidies to encourage them to take expensive PD-specific training classes and operate the classes long enough to find an audience referred by doctors we convinced. Our big break came when we, and one of our partners in this venture, Paul Delgado, a retired boxing champion, were awarded a total of $20,000 in grants from the National Parkinson Foundation.

That broke the logjam, instantly giving us a credible sponsor and the cash. The PD Gladiators Metro Atlanta Fitness Network was launched in September 2013, with a handful of weekly noncontact boxing training, tai chi, yoga and general fitness classes adapted for people with PD. Shortly thereafter the YMCA of Metro Atlanta partnered with us and the American Parkinson’s Disease Association’s Georgia Chapter came on board as another credible sponsor.

Then Dr. Jorge Juncos, a renowned Movement Disorders Specialist at Emory, joined our Board of Directors, and we had our credibility to reach out to other neurologists. While we were able to convince several independent doctors and Emory to refer patients to the Network, some classes fared better than others and finding the manpower to help with clinical and consumer outreach and network development tasks–as well as administration and fundraising–became our major challenges.

Managing the Network became a full-time job for me and Ellie, and as the Network became successful and people relied upon PD Gladiators to maintain and grow this positive, hopeful community we had nurtured, our focus turned to succession planning. I knew that I could not keep up that pace for long, and my own Parkinson’s symptoms would eventually catch up with me. After an exhaustive search last year, PD Gladiators hired Annie Long as our part-time Associate Director.

Annie lives in John’s Creek with her husband and two young children. She was employed by the National Parkinson’s Foundation but had taken some time off to be with her kids. But her mom has PD, and there is nobody more passionate about our cause than Annie. She is slated to become our full-time Executive Director in July and is already transforming our organizational culture.

PD Gladiators – what should we know? What do you guys do best? What sets you apart from the competition?
PD Gladiators is a nonprofit organization devoted to combating Parkinson’s disease with vigorous exercise. Our mission is to focus the attention of people with PD and the medical community on the role of exercise in slowing the progression of PD and to make community-based exercise programs available to people with PD and their care partners.

We hope that by demonstrating the value of vigorous exercise and community-based programs to practicing neurologists, they will spark an increase in participation in the PD community by people with Parkinson’s, leading to a more robust exercise/physical therapy infrastructure, a free flow of information among Parkinson’s patients through increased social interactions, and greater participation in clinical trials.

We operate the PD Gladiators Metro Atlanta Fitness Network, an affiliation of Metro Atlanta fitness instructors, the YMCA of Metro Atlanta, personal trainers, experienced volunteers with Parkinson’s disease and care partners offering a package of PD-specific exercise classes and support that will help people with Parkinson’s design a personal exercise program that is effective, fun and sustainable. We now offer 60 weekly classes on our schedule, providing easy access to PD-specific programming to most of metro Atlanta.

Our most popular classes are non-contact boxing training classes offered by Livramento Delgado Boxing Foundation (LDBF) in Sandy Springs and Parkinson’s Movement Classes offered by the YMCA throughout metro Atlanta. Last year, our members logged about 6,000 visits to LDBF classes and 12,000 visits to the YMCA. Neurologists are seeing a clear difference in the rate of progression of our community of regular exercisers and their sedentary counterparts. More and more neurologists are recommending exercise and our Network classes to their patients, creating a positive, hopeful community of fighters who are taking control of their disease.

That’s what we’re most proud of as an organization–newly-diagnosed patients are leaving their doctor’s office with the hope that there is something they can do to take back control over Parkinson’s disease rather than just wait for it to rob them of their mobility and their lives.

What is “success” or “successful” for you?
I measure success in both the individual stories that inspire us daily and in our ability to encourage systemic change. The stories keep us going; we’ll take a bow when every newly-diagnosed PD patient in metro Atlanta is leaving the neurologist’s office with our motto in mind: Exercise = Hope.

Contact Info:

• Address: (770) 450-0792
• Website: www.pdgladiators.org
• Phone: www.facebook.com/pdgladiators
• Email: pdgladiators@gmail.com

     

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