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.

Get Out Of the Shower!

The water pelts down from the showerhead and I stick my hand into the spray, testing the temperature. It must be hot. Not warm. But almost unbearably hot. Stepping into the tiled shower stall I face away from the showerhead. The steam begins to rise and float out of the shower and fills the bathroom, condensing on the mirrors and windows, starting from the ceiling and drifting down. I close my eyes. 

The morning shower ritual feels like part massage, part sauna and part cleansing. It it is a prayer that washes away the nightmares of my troubled sleep. It re-calibrates my mind. At first there are creative, untethered, and even unimaginable thoughts that drift undisciplined through my mind. I surrender to the muse as words begin to form around my thoughts. Sometimes music drifts among the words.

But, too soon, the invasion of the day’s schedule and persistent priorities bring focus to ideas. Pragmatism begins to sweep away the secret sense of well-being. I know I cannot win this tug-of-war. It ends with silent resentment as the water stops, and cold air creeps towards me, across the floor, over my feet and up my legs. Resigned, I reach for the towel to dry my rapidly cooling body.

And so the day begins with the sacrament of the shower.

This morning I fought harder in the shower before I submitted to the demands of the day. Somehow, it being my 67^th birthday, I felt a sense of entitlement, reward, and privilege. The luxury of those extra minutes lingering in the shower before stepping into the cold air was like a gift to myself. But I could not succumb to this temptation for long. I don’t sit down in a shower.  I may have to at some time in my life but for now, it just does not feel right.

Luxurious as it is, my shower is transition. Just as the dawn is the transition from night to day. It has a natural rhythm.

The symptoms of Parkinson’s disease constitute a harsh reality. Sometimes we who battle this disease seek to escape the pain, the frustration and the fatigue. A few glasses of wine, indulging ourselves, or simply giving in rather than fighting back. Understandable. But we cannot stay in the shower.

As I begin my 67^th year, I know that the temptation to stay longer in the shower will increase. The inner struggle to stay where it is safe and warm will grow. Still, reality and purpose only exist outside the shower.

"We are what we repeatedly do. Excellence, then, is not an act, but a habit." Aristotle.

The Battle of Balance

When I was young boy, a half century ago now, I would stand at the fulcrum of the teeter-totter trying to achieve that perfect perpendicular pose. First one end and then the other would dip as I shifted my weight back and forth to counterbalance. Sometimes I would slip and one seesaw seat with its metal T-bar handle would pound the ground. This would add to the hole that had been inadvertently dug by children who had clung to that end as it dropped from its apex with the bone-jarring crash that usually resulted from the occupant of the opposite end inconveniently, or maliciously, deserting his or her seat. Lessons learned: (1)the law of gravity can produce dramatic and, in some cases, tear-producing consequences; and (2) those on whom we count to provide balance sometimes vacate their designated roles. Both lessons have life-long impact. But that is not what I remembered best.

I could never get the green painted two-by-twelve to stay perfectly still. Sometimes the board would temporarily allow me to stand, not breathing, arms crossed and motionless. But mostly I was constantly having to shift my weight to correct for the wind, a mistimed breath, the unhelpful push of a playground acquaintance or just my own inner lack of equilibrium. Despite my best intentions and disciplined concentration (if I was capable of that then), perfect balance was unachievable for more than a very short time.

Such is life. And more so it seems for those with Parkinson's.

Our daily existence is often jammed with conflicting priorities all clamouring for more. Work, family, friends, community, church, sports and leisurely past times compete, often aggressively, for our time, energy and money. With PD, the balancing of these demands/options can reach epic proportions.

Why?

Well, first there is the restless sleep, which is rarely enjoyed uninterrupted. So a PD person often starts the day tired. Then there is getting up earlier so that you have the necessary time to actually get moving. While I can jump out of bed relatively effortlessly, other PD people need their medications to take effect before they can walk. And speaking about meds, additional time to sort and swallow them without losing them down the drain due to your fumbling fingers can be a frustration. It takes me about 15 minutes more to get ready in the morning just due to "inefficiencies" in morning ablutions. All round, those of us with PD do life slower, which makes the goal of 'balancing life's priorities' (to quote the final entry of our firm's Core Values) more difficult.

But I am learning some things about balance. Like on a teeter totter, balance is not a static state, it is a dynamic one. It requires constant readjustment, sometimes making minor corrections, sometimes major. Just when you think you have it something comes along and sends 'one end' crashing into that 'hole'. It is the relentless search for the balance that actually allows us to achieve it, or nearly. For those of us facing the ever-changing symptoms of PD, we must modify our idea of balance and recognise the need to recalibrate our expectations. Patience and a willingness to go slower in the ever faster paced world we call home, that is what I am trying to learn.

So I say, give yourself a break if you can't stand stationary for long at the midpoint of the seesaw. No one else can either.