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