The Great Reservoir of Unfinished Business

With rare exception, I have used this space to blog about my novels and the occasional political rant. Both topics expose my progressive ideals which, in my view, reflect the better part of me. But as I integrate my newest role—person with Parkinson’s disease (PWP)—into my being I have been engaging in a great Reservoir Braindeal of introspection about who I am and how I will be remembered. I am struggling with a loss of control over my personal identity, a sense of self I have crafted out of the millions of random thoughts and impulses my brain has generated over a half century.

I find this bout ironic because one of the themes in my novel, King of Paine, relates to the notion of personal identity in the modern electronic age. My protagonist, Frank Paine, suffers from inappropriate impulses but is hopeful he will be judged by the words and actions he shows the world and not by the wicked thoughts he has the discipline to filter out. His quest for self-identity is complicated by the availability of anonymous electronic communications, an innovation that allows individuals to test their darker impulses with relative impunity in cyberspace, but introduces the risk that thoughts committed to the digital record might ultimately be traced back to the author. As a few politicians and celebrities will attest, this risk is significant.

This issue has become real enough to me, too, as I research the drugs that will sooner or later be prescribed to treat my Parkinson’s symptoms. The rate of progression and variety of these symptoms differs from patient to patient, and my case is mild enough to allow careful deliberation of my course of therapy, a trait that characterizes me as a lawyer, as an author, and as a man (or so I let the world think?). The results of my research scared the crap out of me.

With medication, I will likely have several good years left to enjoy and many more tolerable ones impaired by a steady decline in my mobility, balance and cognition. There will likely be painful symptoms and uncomfortable side effects. Surprisingly, that’s not what scared me. I’m not looking forward to the pain and discomfort—or the burden I may become to my family—but I accept my fate and will deal with it as it comes. What freaked me out was a recent clinical study that showed 17% of patients taking one class of drug often prescribed for younger PWPs, like me, suffer from one or more impulse control disorders (e.g., uncontrolled gambling, drinking, sexual activity, shopping, eating, hoarding, etc.). I’ve personally met one PWP who bought a string of Hummers (the SUV—get your minds out of the gutter, people) and found himself alone on a vacation cruise without even telling his wife. Other anecdotes I’ve heard involve PWPs–with no unusual predisposition–gambling away their retirement nest eggs. One can only imagine the humiliation and guilt from sexual indiscretions because nobody talks about it.

I am a guy with ordinary pleasure-seeking urges and very fine-tuned ethical and budgetary restraint. I believe in the Golden Rule not because some god or icon commands it, but because it’s the only way we can all live happily together. I believe in progressive ideals not because they benefit me, but because they tend to spread the benefits and burdens of our resources in a way that maximizes their enjoyment by society as a whole. I believe in saving today to buy my freedom tomorrow.

These principles I live by and want to be remembered for were not born from natural impulses but from a lifetime of deliberate thought and painful learning experiences. I would not be the man I want to be if my actions were governed by my unfiltered impulses. Needless to say, I had some questions about the risks and rewards of taking certain Parkinson’s drugs.

Great collector of wisdom that I am, I made an appointment with a shrink. Old “Doc G,” a white-haired gent who peppers his psychiatric patois with literary wit and wisdom, threw me a curveball on the second pitch. After offering some comfort that it was unlikely any dark impulses would result in life-altering behavior without first manifesting in a less humiliating progression, he then asked me why I cared so much about damaging my reputation. Citing the “great reservoir of unfinished business” that subconsciously drives our actions, Doc G sent me on a journey to discover what my parents “did” to me to make me irrationally fear my own bad behavior.

Well, I’m sure there have been defining moments throughout my life—lessons learned from family, friends, mentors, colleagues and historical icons—but after much reflection at considerable cost I remain convinced of two things: (1) my parents did nothing to me that any of us should regret, and (2) my fear of losing control of my fiscal and ethical filters is quite rational. Eventually, I told Doc G he was scuba diving in the wrong reservoir. I presented him with results from clinical studies and shared some of the anecdotal evidence I’ve heard through my growing network of fellow PWPs. I think I convinced him.

I know I convinced myself. I decided to put off the high-risk drug in favor of another that might make me twist and shake in unnatural ways a few years sooner but is far less likely to result in the destruction of my good name, valued relationships or financial freedom. For better or worse, the world will, hopefully, experience my thoughts on a filtered-only basis, with the possible exception of the ones I sneak into the minds of my characters.

But I liked Doc G’s “Great Reservoir” thing. It might make a catchy book title someday. Dibs!

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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.