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.

Just Leave Me Alone!

When life’s circumstances seem to trap you, squeezing you in their grip, applying increasing pressure and demanding a response to questions that are bombarding your universe like incoming meteors, everything gets messy.

We feel out of control (as if we ever were). Death, disease, disability, discouragement, depression, disorientation or disaster - and these are just the things that start with the D - threaten our daily existence. We find ourselves scrambling for cover, digging a foxhole, curling up in a ball, or hiding our eyes to shut out the fear, the pain, the inevitability.

“Just leave me alone!”, we shout to no one and nothing in particular. Can’t we just make it all go away? Can’t we just fix it?

The answer is “No”. We might be able to deny the situations we face for a while. Difficulties might be delayed somewhat. But ultimately, we must deal with the tough stuff, face our fears, fight back, accept suffering and sacrifice as necessary, or at least inescapable, parts of living.

Lately, too many friends are being confronted by the harshest of realities; difficulties from divorce to dying, and a veritable invasion of other sad events. Sometimes, like missiles, these struggles come in clusters, as if the destruction caused by one is not enough.

When it all seems too much, too hard, where do we turn? The Greek philosopher Epictetus said, "We cannot choose our external circumstances, but we can always choose how we respond to them".  But let me add, doing life alone, especially in the crucible when heat and pressure so easily overwhelm, is not the answer.

We are designed for interdependence, relationship, community. We cannot hope to prevail on our own. We need to share the burdens, the pain and the tragedy, especially when they don’t make sense. We need the freedom to ask” Why”, while knowing that there is no obvious answer. We need caring listeners to be our mirror. We need allies to help us fight back, maintain the hope regardless of the odds. But in the process we must risk being misunderstood, rejected, and disappointed by others. After all, we are far from perfect ourselves.

P.S.  While drafting this post I felt alone. I had planned to be attending the World Parkinson's Congress in Japan next week.  I was looking forward to being there mostly to spend time together with friends from around the world who are part of Parkinson's disease community. Unfortunately, I will not be there.  Maybe 2022?  In the meantime, let's stand together. As Michael J Fox said,“We may each have our own individual Parkinson’s, but we all share one thing in common. Hope”

Imagining the Parkinson's Story

What will my Parkinson's disease be like next year? In 5 years? How fast will my PD progress?  These are not inspiring questions.   And if you are asking them the answer in your head is not likely to be overly encouraging.  I could spend all day imagining the worst of predictions.

PD or no PD, we all spend time, often a great deal of time, translating our current struggles into tomorrow's sorrows. Why do we envisage unhappy endings in the middle of the story.  Instead, we could be writing the ending we want and working to make it a reality.  I am convinced that there must be no giving up on the best ending, even in the worst of times.

Great authors start fictional works with the end in mind. Successful adventurers begin their journeys with their destination chosen. It is a terrible waste to simply live like you write a journal or just wander through each day, month or year aimlessly without direction. There is little benefit to singing endless verses of the Doris Day fatalistic hit, "Que Sera Sera". How about memorizing Martin Luther King's "I Have a Dream" instead.  After all, which is more inspiring?

Someone once said, "Life wouldn't be so tough if it weren't so daily."  It is certainly true for those of us with PD. The dailyness is often tough, and we know it may well get worse. But what if we write our story as a battle that ends victoriously. What does "victory" mean to you? If you can't define it how will you attain it? Now I know that a positive plan does not mean it will play out perfectly. Circumstances may dictate edits to the plan, a twist in the tale or even writing a new chapter. But if you cannot imagine a happy ending then today's troubles will replay themselves as variations on the "woe is me" theme.

We must dare to imagine a way through the troubles we face. We must define success even when doing so creates the fear of failure. We must pursue our best dreams even if it means confronting our worst nightmares. If we fail to script a hero's ending to life's saga then we have become the villain.

Help! I am an 18-Year-Old Stuck in a 58-Year-Old Body With Parkinson's Disease

There was no dream too big. No limit to the adventures ahead. The sun was shining, the flowers blooming, and love was in the air. Life could only get better and better. At 18 years old, the world was literally my oyster, seeded with not just one pearl but an inexhaustible supply. I wanted them all.

Growing old or suffering some sickness were too far away to even imagine; a highly questionable long-term weather forecast that seemed irrelevant. We were still riding the waves of the ideal 1960s, when we, the flower-powered youth, commandeered the wheelhouse of culture, demanding change and chanting, "do not trust anyone over 30" (David Weinberger, University of California Berkeley, 1964).

40 years passed. Quickly! Those years were filled with pursuing dreams; sometimes realizing them with jubilation, and sometimes watching them die a slow, discouraging death. Most of us have now come to realize that, in our rebellion against authority, one thing we had forgotten was to "respect our elders". In fact, we had forgotten our elders altogether. The "old folks’ homes" were nonexistent to most of us back then. Parkinson's and other "old people’s diseases" were virtually unknown to young people. Of course, all that is changing. Now, when cursing the dizzying speed with which technology changes, we may whisper, at least to ourselves, "do not trust anyone under 30". We cannot seem to keep up to them. We are tiring of the panicked pace. But we do not know how to slow down and give up the control we have maintained for the past four decades. In fact, we may even fear that the youth of today will follow our example and relegate us to somewhat more upscale "old folks’ homes" to be left alone to question the quality and powerlessness of the lives we have left.

For many of us in this bloated demographic bubble called ‘baby boomers’, we have begun to realize the ironic comparison between the heady optimism of our teenage years, and the over-promising, under-delivering expectations we are sold on infomercials guaranteeing painlessness, performance and prosperity to defeat our skepticism. Somehow, to put our hope in either the drug-induced dreams of yesterday, or the pill-popping promises of tomorrow, seems hopelessly unrealistic.

Perhaps foolishly, I am still 18 at heart. But I seem to be indentured to a body that is insistent on teaching me about pain and imperfection, aging and disability. Despite these lessons, there remains in me, as there does in many other baby boomers, an enthusiasm, a curiosity, a thirst for learning and a heart that wants to see the world become a better place. But the 18-year-old heart has matured. While optimism may be more guarded, I cannot give up the belief that our generation can make a difference, both for ourselves and the generations to follow.

It is an exciting time to reclaim the best things about our youth: our communication of passion, our ability to understand power and influence, our willingness to work together despite differences. But instead of being distracted by protests, parties, pot and politics, we have an opportunity to use 40 years’ worth of skills and resources to focus on the needs of those who face, or will face, chronic and degenerative disease. That is more than a distant dream. It is attainable.

Apathy to Optimism - My Parkinson's Pendulum

Parkinson’s disease can test the toughest and most hardened, playing havoc with your emotions. Over time, the Parkinson's pendulum picks up speed. Sometimes it is like a swing, pushed so hard that it reaches a near horizontal plane at both ends. It is then that I feel insecure, a sense of being out of control. Yes, there is a rush as I speed from one emotional pinnacle to the next, from push to pull and back again. But I wonder each time that I fly by the safety of the ground, who or what is pushing me out of control. Or am I simply pumping my own legs to achieve the heady heights and speed.

Life with PD has been like that lately. One minute there is exhilaration at the challenge, and the next discouragement. I move with ever-increasing velocity from enthusiasm to apathy, optimism to cynicism, ready to take on the future then over-burdened by the present. I know it is related to the PD, whether it be the disease itself, the medications, or the psychological reaction to the uncertain but inevitably compromised future.

And yet there are moments, like now, when the spin cycle slows enough for me to gather my thoughts and remember my commitment to being positive. You see, I realized that it must be a commitment, a decision, for there are those who will beckon me to visit the land of negativity, all the while gripping their own half-empty glasses. They seek to defeat any sunshine that might creep ever so tentatively from behind the cloud that is raining on every parade it can find.

At every step along the path of Parkinson's there are choices I have to make. Will I be brought down by the pending problems, or buoyed up by the challenge to find the silver lining. Will I, by words and attitude, choose to encourage others and myself, or fall into the pit of despair, self-pity and depression? In a phrase, will I be positively Parkinson’s or sadly resigned?

Of course, this vacillation in living goes to the very core of who we are. It forces us, even if we do not face the challenges of a debilitating and degenerative disease such as PD, to ask serious questions we fear because we do not have adequate answers. What or who will we put our faith in? At the risk of "wasting" our time, energy and money, what investments in the future will we make? Despite how we may feel; hurt, alienated, angry, or isolated, how will we live each day such that each person we touch will feel cared for? These are not questions that can be answered once and then never revisited. Curious, but that is the way it is with most important issues. They must form part of the fabric of our lives, demanding of us a response, a commitment, a decision, on a continuing basis.

The emotional swing goes forward then backward. For every action there is a potential reaction. Most of my reactions are ill-considered, emotionally-driven and self-centered. But I have learned that it is often better to feel the sting, take the punch, and study the source so that my responses can be reasoned, tactful, sensitive and caring. It is the way I can slow the swing of the pendulum to a measured pace.

It is my prayer that the start of a new month will be an opportunity to re-commit to the goal of living out my Parkinson's positively rather than succumbing to cynicism. Let me point the way to Hope and in the process replace the panic and pain of the pendulum's swing with peace and purpose.

Ever Consider Acupuncture?

Deborah had never treated someone with Parkinson's disease, but I hear this is true of most acupuncturists. In some ways we were even, I had never experienced acupuncture either. It is mostly the word picture in the name that puts me off. Anything involving pins and the word "puncture" does little to comfort me.

My experience with acupuncture, and my relationship with Deborah, began as a random thought. That thought germinated into a greeting. Then the ensuing casual discussion sprang into a momentary suspension of disbelief, which grew into a commitment to experience the unconventional. Let me explain domino affect that led up to this unexpected passage into the somewhat sublime.

On a recent cruise, and before we even left the Port of Miami, I was wandering through the “Spa” area of the ship searching for the fitness area. I had promised my trainer back home that I would exercise every day and eat sensibly while on board. That commitment, despite being made in earnest, seemed to evaporate in the Caribbean Sea air. Deborah, a young, woman with blonde hair, did not fit the part of an eastern healing practitioner. But she was standing in a direct path to the treadmills and stationary bikes handing out pamphlets promoting the ancient art of acupuncture. I simply said, “Hi.” But as I glanced too long at the glossy trifold brochure, my curiosity went into overdrive and I found myself thinking, “Could acupuncture help my PD?” Before I could restrain that out-of-the-box idea, I was actually verbalizing the question and became engaged in a conversation with Deborah about the merits of this eastern therapy. She was perky and persuasive and, despite inadvertently admitting some ignorance about Parkinson’s, she suggested that there was evidence that acupuncture was able to help alleviate the symptoms of the disease. The promotional price seemed low enough to justify an experiment and I thought, “Instead of getting a massage, I may as well give this a try. Why not? When would I ever do this at home?” At that moment, with some faint fluttering of hope and anticipation in my chest, I signed up for one session to start at 9 pm that night.

Immediately upon stepping into the small candle-lit room, I was aware of that familiar professional skepticism creeping into my thoughts. The aura was more like one of those aromatherapy advertisements than a place of medical discipline. Deborah, who tried to convince me that she had been at it for many years (5 to be exact), explained the procedure. But she seemed considerably less convinced that it would do much good, at least without numerous visits (at the higher price of course) before the cruise was over. I suspected that she had sought to verify her prior enthusiasm by a quick follow up Google search of ‘Parkinson’s and acupuncture’ and realized that she might have oversold the curative potential somewhat. Regardless, we were both committed to the experiment, and I ultimately found myself laying face down in the quiet room, face pressed into a donut cushion and naked from the waist up. Soon enough she began traveling down either side of my spine with her fingers, tapping pins into seemingly random locations like pushpins in a map marking the route taken. The nagging universal question about acupuncture had been answered. You feel it but it does not hurt much. I could not see the needles even if I opened my eyes but imagined them sticking out of my back like a porcupine with a Mohawk haircut. The pin-marked journey down my back took only moments, after which the lights were lowered and I was left alone for 30 minutes.

The sudden thought of a fire alarm crossed my mind. How would I get off the bed without burying the pins permanently in my spine? How could I escape the dimly lit room to make a mad rush for the lifeboats, all the while trying to protect the small nails in my back from being hammered into place by the crush of the panicked mob? I surmised that Deborah would not be there to assist with hasty extraction of the needles, as in all likelihood she was busy in another tiny room poking and pricking another half-naked patient for the same promotional price I had paid.

When Deborah returned to see if I had succumbed due to loss of blood, or suffocation from the candle fumes, she politely asked how I felt. I sensed she was just pretending because before waiting for the answer she again tried to convince me that future visits were needed before there would be any noticeable benefit. I was a little concerned when I hesitated, given that she had not removed the tacks from my back. As she pulled the needles from my skin and I extracted my numb face from the donut-shaped pillow, the pinprick of hope that I had allowed to penetrate my skepticism disappeared. My short-lived optimism deflated like a balloon wounded by a chance encounter with one of the pins.

When you have a disease like PD, or any other serious ailment I expect, and the medical profession offers little hope except symptom alleviation options…with their risks and consequences, you consider alternatives. My experiment with acupuncture was worth the price and while this therapy may have helped others Deborah did not convince me of its merits. But there is still room in this skeptic’s mindset for selective consideration of unorthodox treatment of Parkinson’s. Why not? Stay tuned for my next experience: the hyperbaric chamber.

Dare the Dragon of Depression

In the relentless gray of this November day the cold rain halfheartedly maintains its soggy grip on near-leafless trees and unmowed lawns. It is drab, dreary, and the sunny days of last week, last summer and some future day seem depressingly distant.

On days like today the dragon of depression stalks me, breathing not fire but darkness on me and others who are already tired and stiff from trying to control the constant tremors. The fierceness of our Parkinson's foe often leaves us too fatigued to find any hope to re-light the lamps that dragon breath has doused. Sometimes we cannot fight the darkness, the depression caused by constant demands upon our deteriorating bodies. Sometimes we can barely grit our teeth and close our eyes to glimpse some distant light of memory or anticipation. Sometimes these stressful short, fall days and restless long nights leave us feeling desperate and alone, wrung out.

How do we face the dragon of depression? How do we battle back from doom-filled thoughts that discourage and disturb us?

I am but an early onset traveler on this narrowing road called Parkinson's. I am not dominated yet by symptoms, but still challenged to fight back harder every day. But I do know that 50% of those who deal with this disease will have to battle the dragon of depression. Already I have felt the cold breath of the dragon trickling down my spine from time to time.  I needed a battle plan, a strategy, and a weapon. So far I have chosen those set out below.

While seemingly trite, my overarching battle plan is to 'take each day as it comes', which, as those who have tried know, is much more difficult than it seems. When dealing with despair I seek to avoid the anger and frustration that follows the thoughts of how I got here. Why me? Why now? Who did this to me? What could I have done to stop it? In the darkness a rearview mirror is helpless, and lends itself to paranoid reflections. I cannot fight the battle today by focusing on the ones that could have, or should have, been fought yesterday. Likewise, tomorrow has not yet rallied its enemy forces against me. Fear of a difficult future does nothing but sap the energy I need for today's contest. I must face only the fight before me! I believe I have what it takes for that.

My strategy is simple: learn to not fear the darkness, take solace in its silence, embrace it as a friend who can teach wisdom about who I am and how to meet the challenges, present and future. Running from or in the dark is dangerous, and panic leads us nowhere. It is not the night that need be feared. It is the fear itself that leaps inside of us, our breath quickening as we drop our guard and run headlong to escape something we carry with us. The preferable path to take is to wait, accustom our eyes to the darkness, and move deliberately through it, observing the directions that are best to take. It need not be a journey taken alone. Friends, be they professional or personal, are often necessary companions. We will find our way out.

The weapon I attempt to employ was reflected this week in a card I received from a friend in the legal profession who stated that this blog reminded him of the old Chinese adage, "It is better to light a candle than to curse the darkness". We do not have the power to convert the night to day, to control the sunshine, to banish the gloom and darkness. But we can light a candle. And wielding its tiny flame we can keep dragons at bay. There is always hope if we but seek it. For some it is the hope of finding a cure that lights their way through the darkest hours. For others it is a faith that no matter the difficulty there is a purpose in it all. As it says in the Bible, "... we do not lose heart... we are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted but not abandoned; struck down, but not destroyed... therefore we do not lose heart" (2 Corinthians 4).

So, as the winter wrestles warmth away and sometimes leaves me weary and overwhelmed, I will sit quietly sipping a glass of Pinot Noir with my wife, light a fire in the fireplace and determine in that moment to let the flames defeat the dragon.

Deer in the Headlights

There were fewer than 100 attendees arranged around tables in front of me as the lapel mike was clipped onto my shirt. They were mostly seniors (a rank I will soon achieve, or have entered at some restaurants), none of whom I knew. Even so, I strained to discern the emotions in the eyes staring at me. Fear was what I saw. Faced with that observation, what could I say? Of course there was fear. They had recently been diagnosed with Parkinson's Disease and were attending the "New Diagnosis Seminar" sponsored by the Parkinson's Society of British Columbia. And I was there to talk about living with PD, the topic of this blog and an all-consuming focus for me.

Encouraging the small crowd was a challenge. It is difficult to convince those who's world has been rocked by news that there would be extraordinary challenges ahead. Some days might be tear-stained, painful and dark. At times a sense of hopelessness might creep into the mind and seek to blot any sunshine or smile. I knew the sense of isolation and dread that simmered just below the surface. Even those who just came with loved ones who had been diagnosed with PD were asking the question (whether aloud or in their hearts), "What do I do now?" It was the reason they had all come.

This was no time to entertain with platitudes or make shallow promises. I wanted to inspire. I was incredibly inadequate for the job, but I knew that I had to do my best. Words have great potential. They can be powerful. As Buddha apparently stated, "Words have the power to destroy or heal. When words are true and kind, they can change the world." Strangely, I had been looking forward to this moment. Perhaps it was because it required me to test the mantra of this blog: we can live positively with Parkinson's. Would that sincere suggestion, that call to arms, be enough to rally the sinking spirits of those in the audience. It is not enough to believe what I was saying; it had to be a part of me. Those listening would know if it were nothing but hypocritical hyperbole.

The strange thing about speaking engagements is that you never really know how well or poorly you did. The applause may be flat or overdone. Those who speak to you after may be falsely flattering. There is no litmus test for a well-done speaking engagement.

And if I were looking for some sudden salvation result, those I talked to afterwards still had the 'deer in the headlights' look in their eyes. But they were simply betraying a feeling I still have and try to confront from time to time. There is no easy way to replace the neurologist’s declaration that it is 'positively Parkinson's' with the determination that you can live with Parkinson's positively. The diagnosis can deafen us and often drowns out the positive. Regardless, we are left with one decision: How will we live with this?