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.

Parkinson's Disease: An Unexpected Journey

It was pure fantasy.  Old, almost classical, make-believe worlds populated by strange characters with even stranger names.  And yet it was stuffed full to overflowing with significance, like a stocking hung by the fireplace on Christmas morning.

The story is about an unassuming fellow, who enjoys his books, a warm fire, good food and casual times with friends.  He had lived what we would call a simple, comfortable life in which, apart from a celebration now and then, each day was predictable.  But the unpredictable happened.  Shock, frustration, denial and confusion flooded into this unsuspecting character’s life, and in the process swept away his innocence and uncomplicated existence. 

“The Hobbit” was written by J.R.R. Tolkien 75 years ago.  It has taken Hollywood that long to do justice to its imaginary tale.  Its story is both simple and complex, suitable for children (except the very young or overprotected) and challenging for adults.  It portrays both evil and good, but recognizes the shadow of one in the other.  It shows the wizardly wisdom of Gandalf happily coexisting with simplistic naïveté of Bilbo Baggins, the hobbit.  Courage and camaraderie combine to thwart the seemingly insurmountable destructive powers of darkness and despair.  But it was its subtitle, “An Unexpected Journey”, which led me to conclude this story could be an allegory for life with Parkinson’s disease.

Seven years ago my life was pretty simple.  Staring into the future as far as I could see it all looked predictable, even comfortable.  Little did I know then that my life was about to be figuratively and literally shaken to its very core.  I was totally unprepared and left reeling from the January 19, 2006 diagnosis of Parkinson’s disease.  Life would never be the same.  The path ahead became unpredictable, leading through fields of false hope, black nights of fear and into narrow tracks in the unknown.  At times I found myself lost and alone in what seemed like a maze of caverns. 

But the truth is that, like Bilbo Baggins, I would never exchange the unexpected journey, with its challenges, friendships and adventure, for a predictable, comfortable, stay-at-home life.  No, despite the many setbacks, I would not give up the invaluable lessons I have learned along the way.  Like Gandalf said when questioned about allowing Bilbo Baggins to come along on such a dangerous journey to challenge such a formidable foe.  Some believe, he said, that “it is only great power that can hold evil in check, but that is not what I have found. I found it is the small everyday deeds of ordinary folk that keep the darkness at bay. Small acts of kindness and love. Why Bilbo Baggins? Perhaps because I am afraid, and he gives me courage.” 

Indeed, “it is the small everyday deeds of ordinary folk that keep the darkness at bay.  Small acts of kindness and love.”  The power of Parkinson’s disease in my life has been held in check by the small, everyday deeds of my friends and family.  Their reassuring words and simple acts of kindness and love give me courage to continue fighting. 

Whatever your views about Christmas (whether you are the “Happy Holiday” type or something else), there is something compelling about the story.  A baby, gifted to humanity by God yet born to ordinary peasant parents, he was destined to hold evil in check and keep the darkness at bay through sacrificial acts of kindness and love.  Why?  Perhaps because when we are afraid he gives us courage. 

Perhaps you’re a little like me as I anticipate with some trepidation the New Year, 2013.  If you are, maybe reciting words of Bilbo Baggins will give each of us courage as we embark upon the path ahead.  “I am going on an adventure” makes more sense to me than “Auld Lang Syne”.