(The Beginning of) My Parkinson’s Journey

A version of this post was originally published on the PD Gladiators blog. Minor details have been edited. 

 The journey with Parkinson’s can be a long and frustrating one, but hang in, there are many things you can do to improve your quality of life. One thing that has made a big impact in my life is exercise, and that’s why my wife and I founded PD Gladiators, an organization devoted to removing the barriers to vigorous exercise faced by people afflicted with Parkinson’s disease. [Ed. – the assets and operations of PD Gladiators were contributed to the Parkinson’s Foundation on August 1, 2018.)

My primary care doctor and the first neurologist I saw first diagnosed me in 2009 with Essential Tremor and told me it didn’t matter if it was PD because there’s no cure and it was best to delay drug therapy, anyway. What inspiring news! And when the PD diagnosis was finally confirmed in late 2010, I adopted an apathetic attitude because I was not guided otherwise. In April 2012, my wife badgered me into attending an APDA support group meeting she saw noted on the calendar of our local newspaper, and my life changed.

By happenstance, a pair of wellness gurus were at that meeting pitching a free Tai Chi for Parkinson’s pilot workshop, and the organizer of the NPF’s Southeastern PD Conference, [the late] James Trussell, was there giving away “Aware in Care” kits and urging folks to attend the Conference that October, and an animated duo of physical therapists, Tricia Creel and Doherty Reibesell, were there urging everyone to exercise.

The Tai Chi studies cited by my gurus and the inspirational words of our now favorite PTs led me to believe there might be things I could do to slow my progression. Later, at the Southeastern Conference, Dr. Becky Farley urged us to exercise outside our comfort zone to achieve maximum benefit.

Those two events completely changed my outlook from apathy to hopefulness, and the improvement in my well-being over the past year [2012-2013] has been dramatic. I exercise hard and often and practice Tai Chi and Yoga daily. I’ve been working with my Tai Chi gurus, Bob and Doris, to expand the Yellow River Center’s offerings and am about to join their Board. I’m also working with Paul “The Truth” Delgado, a retired three-time international boxing champion, to develop a boxing training program for people with Parkinson’s in a north Atlanta suburb based on the success of Punching Out Parkinson’s in Fort Worth and Rock Steady Boxing in Indianapolis.

It took me over a year to find the PD community, and as I connect with PWPs across the country at conferences and through Facebook support groups I’m learning my story is a common one. Some neurologists make their patients aware of exercise programs, support groups and clinical trials, but many – maybe even the majority – do not. PD Gladiators’ mission will be to educate the public, people with Parkinson’s disease, and the medical community about the role of exercise in slowing the progression of Parkinson’s disease and to make community-based exercise programs available to people with Parkinson’s disease and their caregivers. We intend to proactively spread the word to practicing neurologists so that newly-diagnosed Parkinson’s patients learn about the benefits of vigorous exercise and the other things they can do now to live better with PD faster than I did.

There is enough information available to convince you to start exercising before PD stops you from moving. A body in motion tends to stay in motion, and a body at rest tends to stay at rest. The choice is mostly yours.

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  • Larry and Ellie Kahn

  • When I was diagnosed with Parkinson’s disease in 2010, my neurologist told me there was nothing I could do to slow down an inevitable slide into disability. So I simply (apathetically?) went about the business of researching my third novel for over a year until I crossed paths with others who had discovered a curiously overlooked goldmine of scientific research suggesting vigorous exercise could help slow the progression of PD and improve quality of life.

     

    After experiencing the impact of exercise myself, my wife, Ellie, and I began brainstorming with other believers about how to effectively spread the gospel of exercise and hope.  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, Livramento Delgado Boxing Foundation, Yellow River Center and other independent fitness instructors 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.

     

    By 2018, the Network consisted of over 60 weekly classes, and metro Atlanta “gladiators” logged almost 25,000 class visits for the year! On August 1, 2018, the Parkinson’s Foundation and PD Gladiators determined they could better serve the needs of the Parkinson’s community through an organizational unification. Ellie and I served on the Advisory Board for the Parkinson’s Foundation Georgia until retiring in October 2019. PD Gladiators Executive Director Annie Long continues to manage and grow the Network as an employee of the Parkinson’s Foundation.

     

    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.

     

    I believe that problem-solving is a team sport, and I encourage you to join in the discussion. Let’s make Parkinson’s Ideas, Man an incubator for high impact solutions to the issues that effect us most.