Parkinson's disease Archives - Books and blog by Peter M. Hunt

Life is hard

Life is hard, and it does not get easier as we age. With an incurable, progressive disease like Parkinson’s there are bound to be moments with little or nothing to look forward to, which begs the question, why continue?

I remember when I began asking that question in 2014, more as a hypothetical as I was mostly happy at the time. It was just before my deep brain stimulation (DBS) surgery, on the steep precipice of decline nine years after my Parkinson’s diagnosis. But the real possibility of gaining a renewed lease on life because of DBS existed back then. Eight and a half years later, there is no such “hail Mary” play for me to delay the inevitable descent into stillness.

What is it that keeps me from constant depression? Life could get far worse as Parkinson’s progresses, and it probably will. So why stick around?

Seventeen years ago, just months after my diagnosis, with my pilot’s license rescinded, my job gone, and no idea what would happen next, I promised myself that I would take advantage of whatever time and capability the disease left me. The only certainty before me was pain, discomfort, and death. Fuck Parkinson’s.

Six months after diagnosis, I was skippering our new boat far into Canadian waters with my beautiful wife and children. Since then, I’ve tried to squeeze every last bit of life from chance and circumstance.

My most meaningful life experiences have been born from the fires of Parkinson’s threatened constraint, allowing me to grow and love without reservation. Yes, “Fuck Parkinson’s,” I say, even as I embrace the disease. Without conspicuous challenge stretching our core prospects, life tends to pass us by.

It makes me smile. Hey, Parkinson’s—you’re the best thing to ever happen to me. What do you have to say to that?

A friend of the strangest sort

Astros, Peloponnesus Peninsula, Greece, 1976.

Gently kicking face down on the surface, I breathe deeply from the plastic snorkel with disciplined practice while following the shadowy school of giant fish on the bottom. The water is clear, but the ninety-foot depth hosts a confusing array of thermoclines. These sharp drops in water temperature create subtle obscurations to visibility, wavy zones of disparate water densities.

My 14-year-old mind tries to process a plan for the impending free dive and return to the surface. How will I know when I’ve overstayed my single breath welcome? Will I even reach the bottom? And if I do, is my speargun powerful enough to kill such huge fish? The deepest that I’ve been before today is just sixty feet.

A moment later and any indecisiveness is gone as I take a final deep breath and rapidly pike my legs up, waiting until my fins are entirely submerged before I start to kick. With speargun extended forward to streamline my form, I rely on my powerful thigh muscles to push me toward the bottom.

I savor the frontier feel of jeopardizing it all for an enigmatic prize. My sole companion on this new adventure is a novel sensation—fear. I am profoundly alone. It is just me, the fish, and the sea. I pass sixty feet without hesitation, ignoring the awful sensation of lungs already craving air, a clear and imminent warning that I’ve gone too far, that I am beyond redemption’s range…

As the incident’s physical sensations pass through me almost half a century later, the abject terror is fresh and eerily sweet, much like the out-of-control feeling of a Parkinson’s brain fog. It is a familiar, time-honored fear—a friend of the strangest sort—that joins my downward plunge, still feeling utterly alone and craving air, in a great circle of reflective mastery.

Delightfully depressed

A few select songs incapacitate with their haunting beauty, stranding me in a netherworld of delightful depression, frozen in a timeless dimension of emotion. Lola, by the Kinks, has always been one of these songs for me. These compositions evoke a purity of joyful pain that overwhelms, losing me in a cathartic confusion of authenticity that I’ve only recently recognized as the sharing of unconditional love between unfamiliar souls.

This experience is not today’s fairy tale notion of romantic love that we’ve come to believe reflects truth. It is far more potent a sensation, bringing one to their knees in the moment’s ecstasy, without regard for sex or society’s veiled ingratitude for the gift of life. I find myself encountering this phenomenon more frequently, the greater my Parkinson’s induced incapacity.

Usually precipitated with a shared look into the eyes of a stranger in passing, it infuses me with an immediate need to cry, deeply, not in sorrowful wails of expectation, but in a tsunami of clarity beyond human convention, unknowable energy coursing through me with all the beauty that life brings. With the immutable transience of grace, welcomed in the glory of all that is, we share through infinity’s moment a glimpse of the ultimate wisdom of the eternal.

Preparing to land

Trying not to squirm in the 737’s exit row, I struggle to avoid bringing attention to my condition and risk losing the relative comfort of extra legroom. As I stare at the boarding passengers, no earth-shattering revelations pay visitation. Carefully reviewing the emergency exit card, I weigh the value of being a former airline pilot with emergency exit training with that of the average fully physically capable passenger.

If I am fortunate enough to travel solo again, the overarching lesson is that I grow progressively weaker each day away from home. Sleep is as elusive as the disease is fair, unrecognizable in form or effect. Each successive day brings a progressively worsening brain fog, less ability to speak cogently for much of the day, and less independence. I thought Parkinson’s would behave similarly to home if given sufficient attention. I was wrong.

The effectiveness of my deep brain stimulation (dbs) system is waning. I’ve assumed that as dbs loses effectiveness, previously dbs-masked symptoms will present unusually quickly. My assumption could be faulty. It is a question for my neurologist next appointment, but it is growing apparent that the current rapid rate of disease progression could also continue.

I know where the finish line of this race lies; the desired speed and direction to traverse the course are still mysterious, however, wreaking emotional wreckage with haphazard intent. Gently, with heart’s still longing to bracket likely corners of retribution, my future becomes apparent with a sense of serendipity ordinarily reserved for dreams and flow-states of unusual grace. And then, in an enduring spectacle of confusion, it joins with the grand mystery, penetrating form with the ease of the ethereal.

Home is gradually coming into view.

Life’s details

Sunday, while driving through town on my way to the grocery store, I encountered one of those indulgently sincere, shared moments created by connecting souls with candid meaning.

I stopped as a middle-aged lady with impaired mobility wheeled her chair slowly into the crosswalk. Glancing in my rearview mirror, I could see the cars quickly line up behind me.

The wheelchair edged out into the street, the woman doing her best to expedite her transit but having difficulty due to upper body strength issues. Uneasy with holding up traffic despite enjoying the safe-to-cross signal, she started to drift back with gravity in response to the imperceptible crowning of the asphalt that ensures water runoff.

Unfathomable to most, this brave woman’s terrifying challenge was merely to cross the street.

She stopped her backward slide and, visibly flustered, turned the wheelchair backward, facing me in an attempt to gain leverage with her stronger triceps. She looked at me, probably expecting to see the shared malady of our time, frustration-induced road rage. Instead, I smiled.

I cheered her forward with my expression in unwavering support. She had a kind face, one that glowed with welcome yet could not hide her terror at the thought of being singled out by an inconsiderate passing driver.

Suddenly, we both started laughing in the joy of trying, of not giving in to a less-than-easy life. She inched across the street’s centerline to the favorable grade on the other side, her eyes never leaving mine, smiling sincerely without interruption.

Our silent communication joined us temporarily in the love of life as it is. We went our separate ways.

Grace resides in life’s details. Meaning is present in the ordinary acts we perform, no matter how trivial, requiring only that we slow sufficiently to notice.

And loving it…

For the last year or two, pacifying insecurity from attachment has become a futile nocturnal chore of necessity. Never able to wholly rid my body of instinct, night after night, even our dogs sense my alerted “fight or flight” state of nervousness, evoking a mirror-image mimic of restless hell.

More than a reaction to a mad world absent moral backbone, chronic anxiety and depression structure the disease’s sole promise:

“You will be ground down, worn out. You cannot win.”

The nights drag into weeks, months, years, and decades. Without rest, sheer will is the only weapon to lay anxiety and depression to temporary quiescence. The rules, hopelessly skewed, demand anxiety and depression be met head-on in unadorned rawness, allowing them to run their course. Somehow, you struggle on.

Coming to terms with moderating my attachment to those I love is anything but straightforward. Fear of a loss of perceived (did it ever really exist?) control is a game properly played in the trembling nuance of twilight’s shadows.

My only shockingly meager piece of advice after 17 years of round-the-clock Parkinson’s fallout? Keep at it, keep trying, again and again. And again. Don’t quit, ever.

Somehow, inexplicably, despite the sure knowledge of failure in the end, taking the option of surrender off the table helps. I will go down fighting. And smiling.

Thoughts of childhood calm the turmoiled mind. My favorite television childhood TV show was “Get Smart,” a 1960s sitcom that follows hapless Agent 86, Maxwell Smart, who somehow manages episode after episode to cheat death through no skill of his own. Each week, one of the show’s characters inevitably illustrates the agents’ dire circumstance. As Maxwell Smart emerges, against all odds, victorious once again, he turns to the camera and exclaims with a grimly authentic smile, “And loving it!”

Surprisingly, this helps me survive the lonely nights, the pure joy of reacting to life’s impossible follies with hardened audacity.

“And loving it” – you got that right, I say to myself, smiling fiercely into the darkness, my words settling close to my heart, taunting and taming that which “is,” gradually gaining breath, inflating the empty shell of quiet night with the warm comfort of love.

I am here, still in life, come and get me. I wonder if tonight the demon warriors will visit in reclamation of mortal audacity, knowing that I will not go down without a fight.

And I am ready. And loving it…

Reflections

I usually prefer to walk or hike alone to have an undistracted opportunity to think until thought is no longer helpful. These periods of meditative-silenced cognition bring my most peaceful moments, absent the standard lunatic ravings that bounce around my brain with no other purpose than to let me know that the ego is still firmly in charge.

Occasionally, I wonder if any thoughts are genuinely my own or whether they are reflections of those close to me, separated only by artificial habits that consolidate our individuality. Even people with whom I disagree, some vehemently, seem to mirror a part of me lying in wait at the periphery of consciousness.

I’ve begun to consider people’s opinions first in light of how they might mirror one of my character attributes, either past or present. It helps me better understand those around me and accept their beliefs as valid with a little less internal resistance.

We look to the mirror’s impression of the external self as clues of the inner person magnetically draw eyes to eyes. Staring into Nietzsche’s abyss caters to longings nestled deep in the soul of nature’s most curious creature.

What fall from grace precipitated the divisions that plague us, separating humankind from implicit piety, consecrating nature with the threat of horrific destruction, inuring us to the permanence of impurity? Believe that we can do better. Believe in the good that surrounds.

Tribe

Most of us spend our lives in a small circle of friends and family, echoing back familiar reactions to what we perceive to be objective reality. But the cruelty of a chaotic world occurs so quickly that even a formally cohesive tribe can be split into irreconcilable interpretations of sanity.

In today’s world, the pendulum of truth swings viciously through every conceivable color of veracity’s tableau. Perceptions of fundamental reality vary everywhere, corrupting effective communication and eliminating any possibility of compromise. One of the first casualties of cultural ruin is a sudden collapse of shared values, which, in turn, commands an alarming intolerance and reliance on violence.

Ordinarily, if circumspect in method and curious in intention, delving into our darkest nature can be healthy; exploring life’s shadow side can be integral to the self-discovery process. But to dwell exclusively in life’s gloomy silhouette is begging for tragedy, capitalizing on monsters of destruction born of greed and dread.

The world appears to be on the verge of great schism, nurtured by vulgar and hackneyed doctrine and egged on by arrogant pride; our basest traits grow emboldened by the harsh veneer of malicious reaction and violence.

It is not too late to travel to the self that exists deep within each of us, as envisaged across millennia, to rally the genuine nature of man. Humankind survives as one or perishes as many; either lives through love or dies in hate. It is up to us in our daily lives to decide; how we treat others directly impacts the wider world, be it with love or hate.

Honoring mutual decency, dare the collective soul to join the contented refinement of accord. Spur the heart’s courageous emanation toward grace. Choose love.

Attachment

We leave this place of interactive existence more naked than upon our arrival—when born, we are graced with the body’s solid mystery, while our departure heralds not just the relinquishing of all material possessions but potentially all of material reality. Even our body forsakes us as we embark on the great mystery.

In November of a year ago, my son and I embarked on our last shared underwater adventure, after 44 years, my final scuba dive. I knew before suiting up that this would be it for me. It was a balanced decision, one that allowed for reversal if a dramatic change in circumstance occurred, such as a significant improvement in my Parkinson’s or if I ended up in a warm, relaxed climate, a far more forgiving dive environment.

A year later, I decided to give up boating as well, only to reverse course a few short months later, realizing that it was not consciously or intuitively wise to purge one of my few remaining hobbies simply because of hazard. I knew without a doubt that keeping the boat meant frequently operating it solo and sometimes in questionable circumstances.

Danger, however, is a two-sided coin. The ready challenge with the boat ten minutes from home and then only five minutes to Deception Pass’s whirlpools and vicious currents tests me, allowing me to operate at a normal person’s margins despite Parkinson’s. Daring with dire repercussions for miscalculation, I enjoy playing under the bridge.

Reflecting on these two life examples of letting go, what strikes me is that both are inconsequentially trivial in long-term physical, psychological, or spiritual effect when compared to life’s most heart-wrenchingly inevitable liberations from connection: breaking the attachments to my children, my wife, my family, and my friends.

These are life’s true treasures. Flushed in the bonded correlation of being, clinging in alternating passions of desperation and joy, here lies meaning, open to the alchemic ken of the genuine, the moments we spend with those we love.

Stuck

Spending more time stuck physically and psychologically with each passing day is a defining attribute of Parkinson’s disease. The disease physically incapacitates, freezing the afflicted in place, unable to move or speak, making it feel impossible to breathe.

Parkinson’s has not impacted me yet to this point of complete immobility, but I get close enough to sense it coming. The psyche compliments the physical freeze with what feels like a heavy, wet blanket of temporary but debilitating apathy. And then, miraculously within minutes, the paralysis vanishes as the medication’s artificial dopamine takes effect. It is a liberating sensation that requires more and more pills over time as the drug loses effectiveness.

Eventually, the artificial dopamine stops working. It can sometimes seem too much to handle, but with nature’s innate mercy, a person grows accustomed to the frequent life disruptions. If allowed, humans have an extraordinary way of assimilating discomfort as it transmutes into resilience.

Ironically, my project of self-discovery is also prone to extended periods of being stuck: these pauses, a spiritual nadir, trigger new trials, notably insomnia incited panic. Living life authentically by grappling with pain and terror devoid of filter gradually frees me, finally permitting me to continue down the path I have chosen. Never pleasant, always difficult, it is still life’s most gratifying contest.

For friends and family who are suffering their own life’s tragic rendition, here is a gentle reminder of life’s sole promise: we will all die. Make the gift of your time on this earth meaningful.

Learn from your struggle, exercising creation’s alchemy to flourish in your challenge. Shake off the individuality of your labor by treating every fellow human being and all living things with grace’s dignities of love and respect. Live courageously as is known in your heart to be in service of your soul.