Parkinson’s disease – Books by Peter M. Hunt

Losing my mind

As we grow older, it becomes apparent that losing one’s mind becomes both the greatest fear and the only goal worth pursuing. No associated numbers dwell in this no-man’s land of life’s journey: no specific age, degree of education, no amount of effort or time. The realization comes differently to all of us, and for some—I imagine—it comes not at all.

Consciousness, the human concept of the mind, of thinking in some fashion, metastasizes with life experience into a misshapen lump of contradiction. What we pursue does not bring happiness, and neither does what we accept, at least not on a conscious level. But what if happiness is merely the bait, the draw toward a manner of thinking that we are unable to comprehend intellectually, that rebels against the fiber of who and what our society has taught us to value?

The release of physiologic drugs, such as Dopamine—which is near and dear to my heart because of Parkinson’s—signal the positive reinforcement that keeps a desperate humanity looking in all the wrong places, or so it appears. But maybe the direction of the search is unimportant. There is no permanence in anything, especially in happiness. Might it be the process of challenge and reflection that yields reward, that eventually heralds in an elusive contentment, only discovered through an abrogation of a lifetime of facts and figures, of “losing one’s mind”?

Happiness encourages the weary explorer forward while being mistaken by the mind for the desired end state. Embrace your personal challenge. Hug it so tight as to make you brave enough to lose your mind in the process. Maybe all that is required of life is to continue on the journey.

Boldly going nowhere

Although there is a litany of possible Parkinson’s disease symptoms, ranging from dystonia to insomnia to depression and muscular rigidity, in my experience there is one insidiously consistent effect of the malady: a lingering apathetic malaise. This ennui, characterized by a near universal lack of motivation to do anything, has stuck with me on good days and bad, both before and after DBS surgery, and in times of general happiness and those of deep depression.

Parkinson’s makes virtually everything harder, which certainly doesn’t help. Most of the physical activities that used to be fun either no longer resonate or are outside a comfortable range of movement, at least for any length of time. When it takes tremendous effort just to make it out the door and into the car, this can lead to a self imposed isolation and loneliness. Because it hurts wrists, shoulders, and neck just to hold a book for very long or to work at the computer, one is left with a lot of time pacing the house and reflecting on life.

I’ve come to honor this time as best I can, understanding that there is a life of events, thoughts, and feelings to ponder, not with a dull memory’s illusory command of regret or self-satisfied victory, but with mind’s eye squinting in search of a sliver of insight. In frequent times of extreme boredom, I hold out hope for the permanency of an ever elusive peace, as if merely wishing for an ordered state of affairs from a disordered mind and soul might bring it closer.

Still, I jumble ahead to the circular reflection of a lonely man’s stroll into oblivion, boldly going nowhere.

“Motion’s coming on”

Professional aviation uses high-tech flight simulators to train pilots. From the outside, these boxy contraptions hardly look flight-worthy, mounted on multiple steel hydraulic powered pedestals that move the simulator to mimic flight conditions down to the smallest sensation. Inside, the boxy look is soon forgotten as the flight crew straps in to the perfect replica of an aircraft, including a near 360-degree visual screen.

Signaling the imminent start of a training session, the words, “Motion’s coming on” warns the aircrew as a matter of safety, as the hydraulics are engaged and pilots brace in case a system turn-on hiccup causes an uncommanded violent jerk.

At first, the simulator motion makes it feel like you are sitting on the head of a pin, with the slightest shift in aircraft controls causing an exaggerated effect. But that goes away quickly, and in no time the pilot can almost forget that his total concentration is on a false situation. It’s not uncommon to have a pilot finish a particularly difficult simulator shaking from the very real stress of the fake scenario.

In a way, most lives are spent teeing up on a personal life simulator, precariously balanced on a perch of falsehoods, experiencing all the stress and fear of life without actually living, or the benefit of a warning phrase like, “motion’s coming on.”

It might take the epiphany of tragedy to see past the facade of convention. The sensation is not comfortable, the realization that the Emperor has no clothes, that the underpinnings of entire lives have been held up by false gods of materialism.

Living a simulated existence can be comfortable for a while, but we all must eventually face the simple reality of death. This is just a humble reminder that life’s “motion is on.”

The most unlikely of places.

Personal identity is commonly viewed as an externally driven phenomenon that offers no individual recourse, a conglomeration of inputs from the superficial to the soulful that describe a person’s essence. Occupation-based assessments are a good example. The first topic of most conversations between the newly acquainted is what one does for a living. The answer, tellingly, is usually framed as, “I am a blank.” Can these four words come anywhere close to defining any human being?

Of course not, yet we not only allow such self identification, we inadvertently encourage such simplistic descriptions of the indescribable. The greater danger is that this can lead to actually believing we are bound by the limits of a job, societal role, or illness for that matter.

Small talk is, in my opinion, a celebration of the superficial; a denigration of personal meaning and power. We are creatures of habit. How we act gradually defines who we are to the only person that matters: ourselves. We start to believe in single words, such as generous or miserly. And that leaves little power in the hands of the individual when a negative personality trait becomes unbalanced, turning an opportunity for insightful change into never ending self chastisement and helplessness.

Tomorrow is another day, but why wait? Identity is our living masterpiece. Fill the canvas with your personal colors, creating the beauty that resides in the contrasts of your travels, often in the most unlikely of places.

Part Four: Chasing the ball of life.

Humans are creatures of the earth, flesh and blood animals that possess an innate, youthful urge to move, to dart wildly in a celebratory merge of body, mind, and soul. Just like a healthy dog, we need exercise, not only to mechanically grease the inner workings of our physical entity but to also rest the mind and feed the imaginative seedlings of the soul.

Parkinson’s makes all activity hard, just a slip away from disaster on a tightrope walk above depression’s muddy swamp. In “The Lost Intruder,” I discovered that facing physical challenges—both simple and complex—would leave me with a mental high, sometimes lasting for days. I’ve learned since DBS surgery that an intense workout is at times the only tool remaining between me and despair.

During my two-year psychological recovery from DBS—I hesitate to write with such finality, as the process continues—I successfully isolated myself from most people. Probably done from a subconscious understanding, and overcompensation, that what I needed most was the solitude of reflection, the ensuing seclusion has proven incredibly difficult to overcome. I still can’t tolerate small talk and am quick to stop a budding relationship in its tracks if I sense underlying superficiality.

It makes for many lonely hours. Maybe, for the first time in my life, I am feeling the actual, utter emptiness that surrounds once dispelled of most life distractions, like alcohol and the constant background chatter of TV or radio. It’s not just being around people, it’s regularly connecting with them on a deeper plane in a manner that is fresh and new. A tall order, indeed. Slowly, it seems that I am resurrecting my old cadre of friends, but on a more complex level, and in rare circumstances making new, meaningful friendships.

It can be a tortuously slow road, but I do see progress in my journey. I suspect there are others afflicted with Parkinson’s, and other chronic diseases, who tread a similar path but are not engaging in regular physical activity. My advice: try exercising. Do anything; just move. Chasing the ball of life can be hard work, but it can still be fun if you put a spring in your paws, a smile on your snout, and you share with a friend.

#livingwithparkinsons #thelostintruder #peterhuntbooks #dbssurgery

Part Three: Parkinson’s helped resuscitate my soul.

“The Lost Intruder, the Search for a Missing Navy Jet” is largely about shedding old identities, which allowed me to create fresh characteristics and behaviors based on who I wanted to be. Wiping my identity slate clean was daunting. But merely existing without the foundation of an internalized self-portrait, as I did for some time after Parkinson’s Deep Brain Stimulation surgery, was profoundly disturbing, especially while trying to avoid being defined by the outside world.

Working through the emptiness, I experienced honest, unfiltered emotions for the first time in decades. Not since childhood had I felt such stinging gut reactions, real-time feedback that inspired serious reflection on what was important in life.

The solitary time spent on the water combing the ocean bottom encouraged introspection, and with my mind temporarily free of a lifetime of knowledge, logic, and reason, a pair of feelings filled the void: kindness and love. It became evident to me that nothing else mattered, that all man’s rantings and ravings served as distractions from our true nature. I didn’t choose a new identity; it chose me.

Science and technology, man’s tools of understanding, can answer complicated, practical questions, but only human insight—a soulful exploration of the essence of things—can shed light on why we exist and suggest how we might act to realize happiness. To disregard one as trivial is to risk losing the whole point of life.

I have no answers. I do, however, acknowledge my feelings as the most essential part of me, and kindness and love make me feel good. And after all, isn’t that what we are ultimately striving for as we embark on mindless quests for power, money, and fame? To simply feel good about ourselves?

#peterhuntbooks #thelostintruder #livingwithparkinson’s #dbssurgery

Part Two: When even coffee turns—Parkinson’s sneaky demons.

The reconstitution of Parkinson’s Disease (PD) symptoms after Deep Brain Stimulation (DBS) surgery is slow, but the path well-worn from previous travel. My single prescription medication, Rytary, is a Levodopa-based drug like the Sinemet that had grown clumsy in 2014 due to the large doses required. Levodopa is essentially artificial Dopamine, the neurotransmitter that goes missing in a Parkinson’s patient.

I carefully time my dose of Rytari at five intervals daily. The goal is to keep the body functioning in the Levodopa “sweet spot,” bracketed between the fluid, writhing of dyskinesia associated with too much Levodopa, and dystonia’s angry spasms and foot-dragging shuffle. Levodopa loses efficacy over time, however, requiring ever higher doses, narrowing the space of calm until it is eventually gone. DBS temporarily widens the sweet spot, but for how long is anybody’s guess.

Fatigue, caused by the triumvirate of insomnia, the disease itself, and Rytari, factors into every aspect of daily life, and any lengthy task risks ambush by a debilitating sleep attack. Coffee unpredictably either energizes my body (normal reaction) or heightens the sleep attack’s intensity (opposite of normal). Still, I tempt fate’s caffeinated roulette wheel daily; screw it, I like coffee.

After 13 years of living with PD, other symptoms recede into the shifting background clutter of routine: a propensity to choke when eating or drinking, rigid, slow movements, loss of dexterity, joint pain, and others. There is a great deal of time for reflection, meditation, and hanging out with the dogs, but the loss of energy leads to apathy, which can result in exhausted boredom.

No alcohol, healthy eating, lots of exercise, and contact with nature provide the raw materials to cope with recurrent depression. Careful contemplation helps define the underlying reason for despair’s crude urges, allowing them to be at least partially released. I choose to avoid the pitfall of obsessing for a “cure,” to either depression or Parkinson’s, and instead live to learn from them.

There are natural pains in life that are meant to be with us, unmasked by alcohol or other drugs. Melancholy, that delightful sadness of marveling at life’s unfiltered authenticity, is perhaps one of them. The contrast heightens my overall happiness and sense of well-being: the payback is worth it.

#peterhuntbooks #thelostintruder #livingwithparkinson’sdisease #dbs #parkinson’sanddepression

Part One: Living with Parkinson’s Disease after Deep Brain Stimulus (DBS) surgery.

Now in my 14th year since Parkinson’s Disease (PD) diagnosis at age 43, life is more vibrant than ever in physical activity and meaningful social engagement, offering up moments of rewarding personal reflection. Although not diagnosed in “old” age, it seems that PD has lured me to an enjoyment, a trust, in the process of life that, ironically, might lay the foundation for a sense of peace through advancing years and into death.

My 2014 Deep Brain Stimulation surgery (DBS) set back the PD-symptoms clock a good number of years, allowing me to reconcile the harsh physical effects of pre-surgery Parkinson’s with innate happiness. At that point in my life, I needed a fierce battle to help eradicate my previous identity, wiping the slate clean of many harmful societal expectations and preconceived notions along with any unhelpful longings for the past and future. Only then was I able to start the process of developing into the person that I truly wanted to be.

My latest book, “The Lost intruder, the Search for a Missing Navy Jet,” describes in detail my pre and post-DBS surgery challenges with Parkinson’s—as well as the DBS procedure itself—and the fundamental re-writing of my identity. The story is not a reductionist laundry list of tactics for facing down PD. It is about a revitalization of individuality, of setting the initial course of character for the voyage to becoming who I want to be. As with life, the journey is not always comfortable or pain-free. Nor is it a sure thing. But the passage is well worth the effort; it might be all in life that ultimately means anything.

My personal exploration continues here. Won’t you join me?

#thelostintruder #dbssurgery #livingwithparkinsonsdisease

Open letter to North End Fitness

“Although I owned a boat, I had no sonar, metal detector or any practical method of surveying the ocean bottom. With an incurable illness, no prospect of financial reward, little chance of success, brain surgery looming, and one child in college with another about to start, I was not in a position to spend thousands of dollars on a search. Still, desperate for a distraction, anything to pry my focus away from the disease, I decided—the hell with Parkinson’s. I’m doing it.” – From the “The Lost Intruder, The Search for a Missing Navy Jet.”

That was me in 2014, nine years after being diagnosed with Young Onset Parkinson’s disease at age 43. I went on to find the missing A-6 Intruder—a jet I had flown from the aircraft carrier USS Ranger—a feat of perseverance that four U.S. Navy ships had been unable to accomplish in 1989.

Since then, I’ve undergone Deep Brain Stimulation surgery, setting the clock back several years and increasing my physical capability. Parkinson’s still makes most things difficult, however. Even walking with a decent posture and rhythm requires continuous concentration and focus. Constant joint pain, insomnia, a lack of dexterity, and depression are a few of the daily companions that challenge my imagination with ways to stay positive and active. For a Parkinson’s patient to give in to fatigue and stop exercising can lead to a slow death.

That’s where North End Fitness comes in. I am the token “Y” (chromosome)—the only regularly attending guy—in Yvette’s Interval Training class, and yes, I catch some good-natured grief for that fact. Interval training builds strength while testing balance and cardiovascular endurance. Yvette works us hard as she motivates the class, making it fun, the key ingredients to maintaining a regular exercise regimen.

Every time I go to Interval, the sense of achievement allows for a small victory that helps me step up to life’s daily challenges. Some days are harder than others, but Interval, like the many other excellent classes offered by the great instructors at North End Fitness, motivates and inspires beyond the doors of the gym. It sets my attitude for the day, keeping me plugging away when the alternative can be devastating.

Parkinson’s has no cure, but if you think about it, neither does life. Staying active and being around positive, engaged people goes a tremendous way in making each day just a little bit easier and a whole lot more fun. Thank you, Yvette and all the staff at North End Fitness! – Peter Hunt

Smashwords interview of Peter Hunt

What inspires you to get out of bed each day?
The prospect of touching a single individual and making a positive difference in his or her understanding of life, especially if they have Parkinson’s disease. I strive to be the best listener possible. This often means traveling with another down their personal path of self-discovery, an always fascinating and sometimes enlightening invitation to view another’s soul. If this sounds like a bunch of mumbo-jumbo, please remember that I used to be a Navy carrier combat aviator and commercial airline pilot, as well as a former deep-water shipwreck diver; in other words, one accustomed to life’s harsh perceived realities. But there is so much more out there. By inviting a reader into my story, I might be able to offer a glimpse of possibility and hope for those with incurable disease.

What do you read for pleasure?
Until relatively recently, I read nothing but books on history, politics, and biography/autobiography. Now I look for books that tease the imagination and stir the soul, stories and nonfiction which inspire both deep thought and an unconscious connection of commonality, kindred tales of our society’s generational myths. For me, it is all about trying to understand the experiences of others, be they real or fiction, not to find fixes or cures. There is no cure for life. All we can hope to do, I believe, is to ease another’s path towards a settled, inner peace.

Describe your desk
Moderate clutter with a large, printed sign at the top of the window that says, “Boldly going nowhere.”

Where did you grow up, and how did this influence your writing?
Six years of my childhood in the 1970s was spent in Athens, Greece. These were the magical years of spiritual alchemy before I was poisoned by the societal sanctions of adulthood. Anything was possible, and time was immaterial. There was no TV, just ancient ruins along every roadside, spilling over with stories to tell, sparking imaginative travel far beyond the realm of our family VW bus. I miss those days, back before life was overthought. In my opinion, modern society needs to feel a whole lot more, and think a whole lot less.

When did you first start writing?
When I was 38, five years before my Young Onset Parkinson’s diagnosis. In retrospect, I probably had the disease back then, though. Parkinson’s has changed my life for the better in so many ways. Without having contracted the disease (what an odd word, “contracted,” used in this manner), I would likely have gone through a life unexamined, unfulfilled, and never at peace or happy. I see writing, Parkinson’s, and who I am today on the deepest level as so intricately connected as to be unfathomable.

What’s the story behind your latest book?
“The Lost Intruder, The Search for a Missing Navy Jet,” is on the surface about my discovery of a Navy A-6 Intruder that crashed off the shores of Whidbey Island in 1989. The jet was from my squadron; I had flown that specific jet both from the aircraft carrier USS Ranger and ashore from Naval Air Station Whidbey Island. But that merely provides structure for the book. The underlying story relates my battle with Parkinson’s disease during the project, and how it transformed me into a more caring and happy person. It is a soulful revel in life’s mysteries, as well as an informative look at Naval Aviation, technical wreck diving, underwater sleuthing, and Deep Brain Stimulation surgery, among other things. Oh yeah, and a page-turning adventure; don’t want to forget about that!

What is the greatest joy of writing for you?
Hearing from readers who connect with my experiences and have somehow benefited from them. Four years of research, searching, and writing balances nicely with deeply relating to another human being.

When you’re not writing, how do you spend your time?
Yoga, exercising, occasionally Scuba diving, some volunteering, and enjoying nature. Thinking a lot followed by doing my best not to think at all.
Published 2018-03-03.