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dbs - Books and blog by Peter M. Hunt

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 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

On report

It’s been one and a half years since the batteries implanted in my chest were turned on, and new electrical pulses began firing in both sides of my brain, ameliorating the worst of my Parkinson’s physical symptoms. It has been both as I had hoped and feared: the sense of transcendental self-awareness has largely dissolved into memory while my mobility and physical comfort are much improved.

Was it a deal with the devil? Not really, I’m not convinced that the gains and losses are inextricably linked, but there does seem to be a tightly bonded exchange of the two; quid pro quo. Is it insurmountable? I don’t think so; I don’t know.

A pall of apathy guards my mind, seeping and sealing brief breaks of initiative in its walled defense, discriminating in the sentry’s challenge, allowing stealthy passage for depression’s silent horde, only to be repelled again and again by the weary keep.

Parkinson’s quiet siege relies on a triumvirate of sneaky partners in its patiently gradual erosion of battlements: apathy, low energy, mild psychosis, the three working in concert, rolling the giant horse past the mind’s defenses to release depression’s miasma within.

I know this; everyone connected closely to Parkinson’s knows this on some level. But it’s so easy to let that horse keep rolling, its building momentum welcomed for its power and repelled for its substance.

It is tiring being tired; excited for life but cursed to stand by as a watcher, non-engaged and frustratingly boiling in a stillness of indecision. This is where I am.

But that is not to say it is where I will be. If allowed, I see signs of improvement, of engagement, of being normal all around. I can reach out and touch them.

And sometimes I do, and the victory is blindingly abundant in reward; and just as quickly, it is forgotten. That is why I am writing this; to help me remember, to keep focus, and to act.

I know I can do it. Sometimes it pays to put yourself on report so that others might know it too. And now you do.


The “all of us”

Two days ago, I had four medical appointments at Swedish Hospital, the location of my Deep Brain Stimulation surgery in Seattle last November. It was beyond strange to return after two months of no visits, and I found myself fighting various demons of distraction.

In order, the appointments were with my primary neurologist, an MD sleep specialist, the Nurse Practitioner who adjusts my pulse-generator batteries to optimize performance for my Parkinson’s symptoms, and the final appointment was with the surgeon who performed the two procedures.

Sleep is still an issue, but it is vastly improved compared to before the surgeries. I still have a sensation of dyskinesia in the pit of my stomach that awakens me after several hours and requires that I stand up and walk. I might not fall asleep for hours when this occurs, but when I lie down, it is comfortable, the bed is soft, and there is no pain. Still, why not try a sleep specialist; day time fatigue can quickly morph into depression, and it makes it more difficult to counter Parkinson’s rigidity.

The real challenge I face is of memory and transcendence to not only understand the lessons learned in the past few years, but to incorporate them into my much improved physical life as well. Easier said than done. It is shocking how quickly we can forget even the most valuable lessons.

How to fight this, how to push back at this totally expected and anticipated challenge? So far, I can’t say I know the answer, which is in part why I’m writing. My greatest post-surgery fear is of what I’ve come to consider the “threat of the mundane.”

I don’t feel like I’m failing yet, but it certainly doesn’t feel like I’m winning either. The challenge ultimately may have less to do with Parkinson’s, and more to do with life in general. How do I ensure that I’m living the “examined life,” of Socrates, the life active in mind and body, a full life?

I don’t know. It’s an easy proposition on paper, but the seduction of a soft bed, ample food, and no sense of urgency make it difficult in reality. Looking at it in a different way, maybe the surplus of plenty is to the West what the “oil curse” is to the Middle East, and we can all see how well that’s playing out.

Parkinson’s has taught me to keep moving, seek out and accept challenge, and take control of my life. Now, after the surgeries, I consider myself less afflicted by Parkinson’s, and in some ways “Parkinson’s free,” which is nonsense—I realize that it is my destiny to travel down the same spiraling path interrupted by surgery sometime in the future.

It is incredibly tempting to slouch back into old routines and habits. How do I get around this? How do any of us do so? My gut tells me that the answer lies in grit, in perseverance, and I know it is right.

I will be fine and figure it out; just wanted to share, now that I’ve got a problem that is likely common for all of us—how to get the most out of life.

It’s good to back with the “all of us.”

A new day

The progression of Parkinson’s is similar to the concept of “boiling a frog”: life’s natural coping mechanism—time—tends to mask the true weight of the illness from the afflicted. Now imagine if the emotional distortion of time did not exist; what if one could instantaneously transit the full range of Parkinson’s most debilitating symptoms accumulated over a decade, and then with a literal push of a button set back the clock ten or more years with almost no indication of having the disease?

This is not only possible, but it becomes the extant reality for thousands of patients with Parkinson’s and other neurological disorders who undergo successful Deep Brain Stimulation (DBS) surgery. I am now one of them.

The past six weeks have been an emotional, intellectual, and spiritual rollercoaster that defies description. In the simplest terms, I have experienced every degree of capability and every symptom of Parkinson’s accrued over ten long years during the thirty days following brain surgery. But that’s not all: at the end of this rollercoaster is a button that allows the actual disease to vanish or return instantly when pushed.

Please let me explain. DBS consists minimally of two surgeries: the first is brain surgery to implant two wire leads deep within the brain. The patient is awake during this three hour procedure so that the proper placement can be assured by judging the relief of symptoms when a small amount of test current is applied. It is, shall we say, “uncomfortable,” but it goes by incredibly quickly.

The patient spends one night in the neurological intensive care unit with some people who are truly hurting, and then is discharged the next morning if recovering well. The ICU stay alone is worthwhile: it is a humbling opportunity to readjusts one’s perspective.

The second surgery occurs six days later. The wire leads left from the first surgery coiled under the scalp are unwound, and then run beneath the skin in the neck and torso to two pulse generating batteries (each 2” across) implanted below the clavicles. This one was a bit more painful, but when considering that it was the second major surgery in less than a week, not too bad. I was back home twelve hours after leaving, and that includes the 2.5 hour drive each direction.

I slept in a chair for about a week. The four incisions, which have yet to fully heal, make feather pillows feel like they are sharp, dry clay.

Immediately following the brain surgery, I experienced the “honeymoon effect,” and for about four days did not show any Parkinson’s symptoms whatsoever. The symptoms slowly came back, and within weeks I had transited the entirety of the disease’s effects since diagnosis.

It was a “Flowers for Algernon” period, physical disorienting and mentally confusing. For a time, I had great difficulty not in knowing who I was, but in knowing how I was.

Five weeks after the first surgery, I returned to the hospital to turn on the pulse generators and begin to optimize the various electrical parameters to deal most effectively with the most egregious symptoms.

I had stopped taking my medications twelve hours earlier to provide a realistic template for the implants, and I could only walk into the hospital with the aid of crutches. My eyes were dreary, it felt as though there was a sock in my mouth, and I was incredibly fatigued. The car ride down had been extremely painful.

The Nurse Practitioner turned on the pulse generators and tried the first setting. It helped a bit. She kept trying new parameters and thirty minutes later, I was bright eyed and walking down hall, swinging my arms, and with only a barely perceptible limp—and still no medication. Last Tuesday, I went in again for a fine tuning. The results are amazing.

I have cut my Sinemet—the medication with the only ingredient that clearly works, levodopa—in half. I have stopped taking Azilect, Requip, and Comtan, and I feel great. I can drive any time of day or night now, I’ve been working out again, and my mind is slowly catching up with my body. I go back to the hospital for a final tune up this Tuesday.

A part of the tune up process, which is done by a Nurse Practitioner (ARNP), a truly incredible person gifted with a sharp mind, highly technical ability, and compassion surpassed by none I have ever met, is to turn off the pulse generators momentarily as we try a new base line parameter.

It is probably shocking to watch: the change is immediate and severe. My right hand immediately trembles uncontrollably, both legs kick out repeatedly in dyskinesia, and I can’t sit still. But the most frightening thing to watch is my face, as my eyes become clouded, my mind fuzzy, and I hunch over as though there is a hundred pound weight on the back of my neck. It becomes difficult to breathe.

Invariably the Nurse Practitioner apologizes when we must turn off the pulse generators, and invariably I am confused, but touched, by the apology. This is my favorite part of the appointments.

Instantly, I am transported back to the painful, heavy load of an existence developed over ten years. And just as quickly, in the time it takes to take a deep breath, I am back to the “old” Peter again, sitting straight, eyes wide and full of energy.

I never want to forget both feelings, even though I’d prefer to spend my life in the “power on” state. I am fortunate beyond words for so many things, not the least of which is the ever present reminder of how difficult life can be.

When undergoing the extensive pre-screening for DBS, I was asked by the surgeon how would I determine if the surgery was a success. I answered, “If I am marginally better in any way for one day, then I will consider the surgery a success.”

How lucky can a guy get? I guess I know the answer.