Apathy and Parkinson’s Disease

To the applause of Canadians everywhere, the Toronto Raptors won the 2018/19 NBA championship. Did you really care? Do you have some travel coming up? Are you excited about it? Maybe you have lots of free time in your schedule for the next couple of weeks. Are you looking forward to enjoying those hours and days? You may be anticipating meeting an old friend, high school buddy or long-lost cousin for coffee. Are you enthusiastic about that?

 I am certain that some of you at least ascribe to the dismissive line of Rhett Butler in Gone with the Wind:  ”Frankly my dear, I don’t give a damn”.

I thought I had experienced most of the symptoms of Parkinson’s, or at least knew someone that had. However, I was ill-prepared for one such attribute.  It crept up on me the past few months. It has proven a stealthy and deceptive enemy, masquerading as a temporary circumstance brought on by any number of life events. It was something I expected to simply “go away” as my life patterns changed. I found myself making excuses when it did not, saying things like ”when (fill in the blank) happens this feeling will disappear”. But it hasn’t. So now is the time to name the unpredictable and elusive symptom apparently experienced by up to 70% of people with Parkinson’s. APATHY. Having capitalized each letter of the word I must admit that it was for emphasis rather than because I felt strongly about it. In fact, everything feels a little (or a lot) emotionally flat.

The shameful reality is that I have fallen victim to this debilitating state of body/mind. Although I’m not continuously aware of its presence, it can climb into my skin at will, like some form of alien. It seeks to commandeer my days, pretending to be the result of fatigue, insomnia, sadness or even depression. Apathy can sit on my shoulder, whispering in response to any attempt at motivation, activity or effort, “Why bother? Just rest for now. Perhaps you’ll feel better in an hour or two. Or maybe tomorrow.  It’s not really that important anyway.” Embarrassed now, I admit to having listened to these prompts and complied, or rather succumbed, to their indifference.

To be completely honest and transparent, when I am caught in the grip of apathy almost everything seems veiled in passionless passivity. The things I used to enjoy don’t seem so important or even attractive. Procrastination and indecisiveness prove stronger than self-discipline and logic. Take this blog post for instance. I have been planning on getting this written for weeks now. But it never seemed to make it to the top of the priority list. In fact, there isn’t much of a list of priorities.

10 years ago, August 30, 2009, I began Positively Parkinson’s in order to encourage others facing the day-to-day battles of PD. No candy-coated aphorisms. No false promises. No venting, rage, or ‘woe is me’ narrative. Just living out the adventure and giving hope as best I can. The 10^th anniversary of this blog should have been enough to rediscover the spark and reignite some passion for the cause, given that I had been looking forward to more time to write posts to share. But  apathetic indifference struck a near knockout blow before I saw it coming.

What exactly is apathy? It is not depression (although it may lead to that I suppose). But the two have some similarities, as both are believed to have neurological, psychological and emotional elements. Of course, the Latin root words provide a fairly clear description of the word:  “A”, means without” and “Pathos”, means passion. That’s easy enough: without passion. And this may be a more pervasive state than many of us realize.

As Helen Keller said, “Science may have found a cure for most evils; but it has found no remedy for the worst of them all - the apathy of human beings”.

My guess is that we all know what it feels like to be apathetic, especially if we live with Parkinson’s disease. According to some studies, 70% of us are affected by this silent joy-killer. But what are the causes? And, perhaps more important, what is the antidote?

My own view is that apathy is not just a shortage of dopamine, but a quiet, self protective response to the lack of hope. Hope for a cure. Hope for a slower degeneration of normal functioning. Hope that there is significance and purpose in it all.

The remedy? Perhaps the best response is a combined strategy (to deal with the multi-pronged causation).  Make sure your meds are working properly to deal with the neurological effects of PD as best they can. Second, enlist a support team to provide structure and process, as well as encouragement and accountability. This could include a spouse/significant other, family, friends and professionals of all varieties. This can go some distance to rebut one’s own emotional and psychological slide into apathetic darkness. And lastly, depending on the supply of energy and commitment left in your tank, establish very modest goals, typically one at a time. For instance, my goal was to write this 10^th anniversary blog post before the end of August. There is nothing quite like succeeding at modest goals to give us the motivation to push ahead.  That sense of accomplishment will help build hope in future achievements.

Bobblehead Sings Karaoke

The Chicago hit, “Just You and Me”, that I dedicated to my wife and sang in the karaoke bar was a little off key and one octave lower than Peter Cetera did it in 1973 (the year before we were married). But that, and the fact that my tremor was accentuated due to being stressed and having forgotten my Parkinson’s medications, didn’t cause me to be embarrassed in front of the entire Kuhn & Company team. They were supportive of and accepted me for who I was, as they have always been (which excuses more than just the bad singing and the shaking).

This scene took place at the "Northern Lights" night club aboard the Holland America ship "Zuiderdam”. It was the 9th Kuhn & Company retreat aboard a cruise ship plying the West Coast waters for a few days of relaxation, teambuilding and continued professional development. These short repositioning cruises that frequently leave from or return to Vancouver in May and September provide an ideal opportunity to express appreciation for our fellow team members, as well as a chance to focus on team issues. This has become a unique highlight of our law firm culture. With the whole team, not just partners or lawyers, and spouses/significant others, it is a hallmark of our non-hierarchical team orientation and core values. But even more importantly, spending three or four days together provides ample evidence for the accepting and caring environment I am honored to work in. And that leads to a bobblehead.

In most law firms no one would risk buying life-like bobblehead dolls as gifts for the partners. Least of all when one of them has Parkinson's, resulting in his head experiencing tremors from time to time. But that is exactly what the Kuhn & Company team did. I was proud of them. Courage and creativity thrive best in an environment where risks are encouraged and people are accepted for who they are.

Despite being the senior partner, I have felt and experienced an incredible amount of support, acceptance and caring since announcing to all members of the team the results of my diagnosis two months after I received it. By that time there were minimal signs of the disease; deteriorating handwriting and some tremor. But I felt I needed to trust my fellow team members with this personal information early on, and well before any of them could ask, "Why did you not tell us sooner?". Of course, there was some risk involved, as some may have interpreted this news as a negative forecast for the future of the firm, but it proved to be just the opposite. No one left, and everyone was fully supportive, understanding and accommodating of the various consequences of the disease.

As my handwriting deteriorated further, a stamp was obtained for my signature, which due to stiffness changes every time I try to make it. When my typing speed deteriorated and sometimes a stiff finger stuck on a key a little too long resulting in some curious, and even laughable, typographical errors (such as the time I sent an e-mail signed "Boob" instead of "Bob"), I converted to voice-recognition software. This demands that I proofread much more carefully, as I am prone to make phonetically correct but embarrassing errors if I am in too much of a hurry, which is often the case.

The lessons I have learned from being in a highly supportive work environment is that having Parkinson's disease need not be a fast-track to retirement or leaving behind the challenging professional arena that I have enjoyed for so many years. I recognize that everyone who contends with PD is not so blessed, but I would urge early disclosure to at least avoid the stress of hiding symptoms from fellow workers and risking the loss of support in the workplace. After all, even a bobblehead can sing karaoke and hear the crowd shout a warm, if somewhat overstated, "Fabulous".

Fear in the Fruit Room

Down the creaky wooden stairs and across the rough basement floor, past the roaring of the sawdust fed furnace, the fruit room waited in silence for me. It was in the far corner, where my approaching frame made only dim shadows on the door as I walked away from the single stairway light. It was called the fruit room because it stored our annual supply of home-canned peaches, apricots, pears and cherries that were sealed in Mason jars in the summer to stock the shelves for the barren months to come. It also contained all our homemade jams and a bin with potatoes that grew sprouts from their "eyes" during the winter months. It was an unheated and damp 8-foot by 8-foot room, rough 2x4 walls, with a vent leading to the outside. Spiders were the visible denizens of that coffin-like room. But most disturbing to me as a young boy was its deathly darkness. There was a bare light bulb hanging in the middle of the room with a pull-string switch but it could not be pulled without letting go of the spring-hinged door, thus plunging the room into total, if momentary, darkness. In that moment I would be alone in the dank and earthy inkiness. What was there that I could not see? “Some thing or person” my hyperactive imagination shouted inside my head. Then the goose pimples and shivers took over, crawling over me as I approached the room, a precursor of things to come. I regularly prayed when I was assigned by my Dad to make the trip downstairs for a jar of something. But it was the exit that had me most concerned. I would grab the string when leaving and lean towards the door handle, just out of reach. Then, springing through the opening, I would flee the unknown terror to reach the stairs and its welcoming light, the pull-string left snapping and swinging as if to escape the place too. I was afraid of the dark, or more precisely what might be lurking there ready to do me harm.

What am I afraid of now? Truthfully answering this question and admitting that I have fears is one thing.

PD has an insidious strategy of occupying the fruit room of my life. It is a dark and inscrutable guessing place that I do not wish to visit. What is in there? My initial response is, "Nothing good”. Only decreasing mobility, increasing shaking, painful intermittent cramping, and a litany of other strange marauders threatening to creep into my body under cover of darkness.

It is the PD "fruit room" that presents what I expect, based on my experience to date, is the worst part of the disease. Not knowing what is next or how fast my symptoms may eat away at my definition of normal.

How do we deal with our fears; our fruit rooms?

First, as I learned (rather slowly) when I was a boy, I need to find courage. Recently, my oldest son, Jordan, who saw active duty as a US Navy medic serving with the Marines, shared how fear was necessary for courage. A soldier without fear is either totally naive (and unprepared) or out of touch with reality (and dangerous). To be any help in any battle one must fight first their fear, then the enemy. And it is an ongoing battle of facing one's fears.

Second, it may be necessary at times to take someone else along. Two people entering the fruit room usually vastly reduce any paralyzing effect of making the journey there. Sharing fear requires that we first identify it clearly and then admit its powerful hold, its semi-permanent presence in your thoughts.

Lastly, we can shed new light on the darkness and its occupant, THE UNKNOWN. Educating ourselves about our feared disease may not be an encouraging task, and it may illuminate the scariness that really did reside in that windowless room. But we can deal with what we see, or at least acknowledge it.

And let us not forget that there are discoveries and sweet rewards in the fruit room. There are treasures we can share with others as we explore and expose the secrets of that scary place. And we will be the better for facing our fears.