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Parkinson's disease - Books and blog by Peter M. Hunt - Page 8

Personal strategies learned the hard way for others afflicted with Young-Onset Parkinson’s

“Just the facts, Ma’am” – first, some background on Parkinson’s.

Being a progressive disease simply means that the illness becomes progressively worse over time. Add the word “incurable” and it’s easy to see why a person with Parkinson’s Disease (PD) might have an occasional dark moment.

Parkinson’s is an “incurable, progressive, neurological disease.” Almost all you need to know in three easy words. Let me add a fourth.

Transition – a person with PD is always in transition. Always.

PD relentlessly eats at one’s body and mind, not with imagined or self-induced symptoms, but with the real, measurable physiological depletion of a person’s Dopamine producing capability. Dopamine regulates muscle control throughout the body and also impacts mood.

Levodopa – essentially the pill form of Dopamine – is hands-down the most effective medication to alleviate PD’s symptoms. The proper dosage, however, is critical: too little and the symptoms will not be reduced; too much causes the writhing, loopy, physically exhausting body movements of dyskinesia that make it difficult to function, communicate, or even think clearly.

Levodopa loses efficacy in the treatment Parkinson’s as the disease progresses; e.g. more must be taken today to produce the same positive results of six or twelve months ago. Determining the proper dose and interval between doses is a never-ending task trying to catch the “sweet spot” of nearly normal. As levodopa becomes less effective, the margin between too much and too little narrows until eventually it is gone. That is why PD always wins in the end.

Depression of varying severity is a hallmark of Parkinson’s. PD depression is not a by-product of the constant wear on the body and loss of hope for the future, although many afflicted with Parkinson’s have some of that too, but instead it is a separate physiological entity; it is a real physical symptom. Please go to this link for more info:
http://www.usatoday.com/story/news/health/2012/11/28/parkinsons-health-depression-study/1731641/

But that doesn’t mean that depression can’t be overcome, at least for the majority of the time, by a patient accepting complete responsibility and control of their treatment and taking advantage of periodic moments of relative calm to formulate a strategy to counter PD’s insidious effects. To do so requires creative and proactive responses to PD’s progression every step of the way, doing whatever it takes to tweak medication dosage and timing until something works.

My neurologist is great, but she – like everyone else who does not have PD – doesn’t have a clue on a personal level what it actually feels like to experience PD symptoms. You simply can’t know without experiencing the disease.

My neurologist appointments used to involve a series of questions to try and decipher what was working, what wasn’t, and how best to tweak the meds. This information went through the multiple filters of my best description of a symptom and her attempts to understand how the medications impacted these symptoms. I quickly realized that a more responsive and empowering approach would be to “cut out the middle man” and take control of my own medications. My neurologist is supportive of this strategy, which I greatly appreciate.

This is not to say that my neurologist isn’t a key part of my overall strategy to counter PD symptoms; I rely totally on her advice regarding the safe limits of each medication and whether there are other options to try. But beyond this, all dosage and timing of pills taken are one hundred percent in my control. If a drug regimen begins to prove ineffective, I don’t have to wait for a Doctor’s appointment; instead, I adjust until I find something that does work.

This approach would appear to be obviously advantageous, but in my experience very few PD patients want this responsibility (this is only an anecdotal guess on my part and I could actually be far from the mark). Empowerment is good. Personal lesson learned #1:

Take personal control of your medication regimen.

The second lesson is to step up to each challenge Parkinson’s presents, while looking the facts square in the eye and acknowledging that at the end of the day the disease will eventually win. Keep fighting. Although you will not win the war, you can win individual battles; you can win “small victories.” The sense of accomplishment from these victories can help one handle the pain, fatigue, depression, and disorienting, exhausting dyskinesia.

Try to take on normal challenges accepted in the past, even if this means being in the public eye, a factor that will almost certainly increase stress and aggravate your PD symptoms. Parkinson’s causes anxiety, which causes stress. Stress in Parkinson’s patients usually significantly increases their symptoms. My advice is to do it anyway.

For me, accepting this type challenge acts as a way to go head-to-head with PD on the disease’s home field. It’s a way to push back. It might be difficult at times, even painful, but when such a challenge is met, it turns a small victory into a very big one.

Here are some personal examples. I still serve on the local school board, often run public meetings, and have given two graduation speeches (a third one is coming up in June) to about 5,000 people. I also occasionally have the opportunity to present on scuba diving and writing to at times hundreds of strangers in different parts of the country. Just traveling to these locales can be a physical challenge.

It is not easy. I always have second thoughts before such events, I’m always scared and stressed, and so far, I have always followed through anyway, usually with my walking canes nearby. But guess what – so far, I have never had to use them: just as it was prior to PD, the bigger the challenge, the greater the reward.

Tackling these challenges has given me the confidence to keep diving, but only with a carefully thought out plan to counter symptoms. I’ve found that the more I dive the easier it becomes, and that I’m capable of far more challenging dives than I thought possible even four years ago.

Parkinson’s eliminates many individual choices over time – it feels great to push back at PD on the disease’s own terms and win. It’s a big victory. Personal lesson learned #2:

Step up to new challenges.

Next lesson: exercise relentlessly and creatively adapt your routine as needed. If an exercise becomes problematic immediately flex to a different one. I’ve had to do this so far with running (I had been an avid runner since about age 15), the elliptical machine, and weight lifting. My current exercises are Hot Yoga (modified as needed), the stationary bike, stair climber, hiking, and when all else fails simply walking or doing leg exercises while lying down. Personal lesson learned #3:

Exercise is the key to mobility and a positive attitude: move!

Let me try to tie it all together with a personal example. About four months ago my body began to make a fairly dramatic shift toward the bad. For the past two years my transitions from “off” (too much or too little levodopa) to “on” (the sweet spot) and back were reasonably predictable. My “off” symptoms of greatest concern are extremely forceful muscle contractions in my right ankle and right wrist, causing pain and making it impossible to walk unaided.

To counter I nearly always have two canes nearby (they are collapsible and kept in a back pack) to avoid getting stuck as it can take up to an hour or longer for an additional dose of levodopa to take effect. When periodic wrist pain is too great to use the canes, I also have collapsible crutches.

Some other “off” symptoms include: joint pain, tremor, deep fatigue, loss of balance, sleep attacks, an extreme free-floating anxiety that comes on without warning, and periods of depression. None of these are fun, but the muscle contractions potentially pose the greatest risk to my immediate physical being (i.e. unable to walk and becoming stranded or causing major injury to ankle or wrist).

For a very long time, my PD symptoms were fairly well controlled with relatively predictable doses of levodopa. My other five daily medications remain quite stable, but these are not nearly as effective as levodopa.

Several months ago this regimen no longer worked, not by a little, but by a whole lot. There seemed to be a constant swing between being over or under dosed.

There was no warning: one day the regimen of the past two years worked just fine, and seemingly the next I could not find the “sweet spot” of balance. Being in constant transition between the two physical states of over or under dosed is very, very difficult, tiring, painful, and confusing.

It took me several months, but I think that I’ve discovered a new workable levodopa strategy for this next round. I now cut most of my levodopa pills in halves and quarters, and in the last month I’ve developed a written plan through trial and error. The plan requires 15 specific times during the day and night when I take a pill or pills of different dosage. I’ve got about 15 minutes leeway on either side to make it work, all other things being equal. But all things are never equal.

Feeling ill, being excessively fatigued, working out too little or too much, hunger, or getting cold all impact proper levodopa dosage levels and times significantly. It’s not an exact science, and it requires constant real-time adjustments.

What have not changed are my overarching strategic commitments in countering PD.

I still exercise 6-7 days a week. I’m still on the school board. I travel to Chicago in two weeks to give presentations on the Andrea Doria at the Our World Underwater dive expo. This routine of challenge keeps me motivated and positive, not all the time, but most of the time.

One last bit of advice: if you have PD, consider making it widely known. This helps fend off misunderstandings down the line when one exhibits inexplicable behavior, whether it’s at the local supermarket, an official function, or a friendly get together.

It would probably be impossible to keep PD a long-term secret anyway. It goes back to controlling what you can; I would prefer that people find out that I have PD on my terms. Parkinson’s leaves no choice in most facets of life: it’s liberating to take control over those aspects of your life that you can.

And when all else fails, laugh often and loudly.

Cheers,
Pete

Empty

Pain is nothing,
Generality of convention,
Relative term, sentence,
Omnipresence,
It’s real.

To feel,
Prickle, tingle, ache,
Unobserved trick,
Saturated wick,
No course.

Full remorse,
Acts unfulfilled,
Dreams left floating,
Death’s ill gloating,
To wait.

The bait,
Life’s solemn promise,
Passion’s blitz,
Temptation’s glitz,
No. It’s done.

The rabbit’s run.

Proof of life

At the fold of the sky and infinite sea,
Stooped and beholden in search of the key,
Hunting out clues to a purposeful puzzle,
The Scribner intently refuses the muzzle,

Dead eager to act and driven past reason,
Fueled by passionate opposite seasons,
No job truly done or ultimate truth,
Bent to the run of misspending of youth,

Why take the risk in leading the pack,
Making brisk haste and breaking at back?
Why choose the path less tattered and worn,
Tempting her wrath while earning her scorn?

She offers no point or trophy or wealth,
No Saints to anoint or promise of health,
But only one way to scratch at her itch,
Proof in the end that “Ain’t life a bitch.”

Breathe life

Life’s simple gift unexpected,
Age’s reward overdue,
No fanfare of Angels’ direction,
Package bequeathed with a clue.

No need to be hidden in secret,
Transparent of motive or strife,
A baby’s first lesson from daddy,
Look up; raise head; breathe life.

Learned over and over and over,
First ball sails over the fence,
A lesson repeated with patience,
Obscured by nothing but sense.

Daughter is nature’s fine teacher,
Her message clouded in fear,
A trust reserved only for daddy,
A tender wiping of tear.

“Tread to avoid going under,”
“Stroke to have fun and rejoice,”
Belief buoys her flounder,
With eyes raised upward and moist.

Two children so full of good purpose,
Carefully minding the path,
Bookends to daddy’s confusion,
Proof of original wrath.

Time brings stooped retribution,
Dark eyes cast slim on the ground,
Guilty of living and dying,
Guilty of making no sound.

Meaning eludes with persistence,
Neck is pulled lower and down,
Nature’s silent reprisal,
A curse of perpetual frown.

Ordained by fate’s ugly minions,
Or life would seem to appear,
Brow draws lower and lower,
An old man’s purchase of fear.

Two children who never surrender,
Kinder in thought and in act,
Taller in spirit and caring,
Two children recalling a pact.

Two children pull eyes to the heavens,
Cut tie to the ground like a knife,
Two children teaching their daddy,
Look up; raise head; breathe life.

Ghosts of the corridor

To be unseen, everywhere an outsider, at home only with ghosts abandoned long ago in the deepest recesses of secret holds.

Time is the difference, bringing closer the once imagined, but now understood to be real spirits that prowl the wreck’s darkened corridors.

No season’s spring of introduction, no cocoon of warm transition. There is no learning or knowing; only existing. Hello spirits and thank you for the kindness of acknowledgement.

It is life’s inevitable disease: identity betrayed; a tainted aura, not worthy of analysis or action. The lack of decision suffocates in finality.

Fight or flight, instinct demands with a hollow ring, but nature’s indifference serves proof for the young to act with the crushable weight of ambivalence.

Life still breathes deeply, as a billion accepted incomprehensibles surround us without frustration or curiosity: a flower, a butterfly.

The flash of a neuron brings the transition from achingly different to the devastating vacuum of invisibility, because what cannot be seen does not exist.

Hello ghosts of the corridor; hello my old, new friends.

Running in sand

Run fast; try to pass quickly, nimbly, but in the recurring multi-dimensional purgatory of the ailment, of my ailment, it is not possible to clear feet of the drag of thousands of emotionless grains of thought, each cognitive morsel bogging down body and soul in mocking slowness, each thought unfulfilled, each unborn image serving only to sharpen the flame beneath frustration’s cauldron.

Stubborn anchors claw, grasp and drag in a toe-hold, steadily and patiently halting clarity and ambition, dooming both to exist without influence. The clutching dregs of ennui deflect the body’s course to a meandering circular shuffle, losing each step forward to two steps sideways.

And I don’t care. Deep within the recesses of my being, I utterly do not care, but even closer to my core is the panicky certainty that I must give a damn, and in the mind’s periphery it becomes – no, it always was – the same indescribably horrible helplessness that a diver experiences with deep water blackout.

Deep-water blackout: When labored breathing is allowed free rein, the pull of the regulator yields insufficient oxygen, and carbon dioxide builds in the horrible cycle of panic until the corner is turned.

Deep-water blackout: Suffocation while breathing; fighting the body for control, desperately needing to move, but knowing that to move now, at the height of incapacity, is to die.

Deep-water blackout: When primal fear harkens to an ancient experience far beyond conscious understanding.

Deep-water blackout: For the diver, losing this battle means death of the worst kind; death by default, death without evidence of a fight.

Deep-water blackout: Nature’s misplaced compassion abates the pain of suffocation and the weight of sleep is seductive and overpowering; the fear of surrender pulls opposite, leaving the diver confused in the middle.

And that is ultimately what kills – hesitating, confused purpose.

When found—if found—the diver appears peaceful in a cruel parody of death’s seduction.

My ailment’s path to life lies opposite deep-water blackout: not moving is death.

So, I straighten my neck and back against the relentless pull, rock back and forth in my Levodopa utopia, and struggle to ignore the suffocation of those who surround me, those who look but do not see; those who question but seek no answers; those impatiently awaiting my peaceful departure.

And I continue to move.

A book with a soul; the writing of Setting the Hook

Self-publishing was not my first choice for Setting the Hook, a Diver’s Return to the Andrea Doria; not by a long shot.

I was fortunate to have had my first nonfiction book, Angles of Attack, an A-6 Intruder Pilot’s War, accepted by a traditional publishing house (Ballantine Books imprint, Random House) in 2002 with modest effort, and I fully expected the same when it came time to circulate the proposal for Setting the Hook.

It was only much later that I came to realize how lucky my first experience in publishing had been.

Only through a series of fortuitous coincidences did that first manuscript find its way into the hands of a reputable agent, an agent who loved the book and aggressively shopped it to the big New York houses. The book was picked up in less than a year and my understanding of the normal publishing experience would be severely skewed for quite a while during my follow on efforts to get other works published.

After Angles of Attack was published, my agent worked Setting the Hook in traditional industry fashion and the manuscript sat idle on my desk while I gave fiction writing a try.

We received multiple “close but no cigar” turn-downs by traditional publishers over the next two years and my agent gradually lost interest in the project. The first draft of my foray into fiction fell flat with my agent (and thankfully so; it was awful), and communications slowed to a stop between us.

Then, in 2005, my life circumstance abruptly changed forever when I was diagnosed with Young Onset Parkinson’s Disease at age 43.

My primary career as an airline pilot was over in an instant due to the loss of my medical clearance to fly commercially. I took on various part time jobs, went to graduate school, and took care of the kids while my wife traveled frequently for her work.

For the next several years I tinkered editorially and stylistically with Setting the Hook, but focused my efforts almost entirely on getting the original version of the manuscript published, first through the few larger houses that did not require an agent, and eventually by unsuccessfully trying to gain new representation.

I lowered my sites. Two verbal acceptances by small independent publishers were rescinded almost immediately for vague reasons that were never fully explained to me (in both situations I’m guessing the editorial patriarch said “yes,” but was overridden by the young heir apparent on the editorial board).

It was only later that I realized how closely my desperate efforts to get virtually anyone to publish Setting the Hook mirrored my handling of the Parkinson’s diagnosis; I was in denial about both.

To be fair, initially it seemed reasonable to deny both problems: medication mitigated most of the Parkinson’s physical symptoms for the first several years of treatment, and the original version of Setting the Hook was a fairly good true adventure story with a smattering of history.

After about four years of not truly examining the underlying meaning of my health situation or Setting the Hook as anything more than an exciting story, I had an epiphany of sorts; the two issues were not simply related, they were the same. Both the story I was telling and the life I was living were shallow, passive observations leading nowhere of substance or value.

I stopped flitting in random directions and began to direct my energy toward producing less heat and more light in understanding both.

Over the course of the next two years I completely rewrote Setting the Hook; not the chronology, structure, or events – they were all fine. I took a hard look inward and gave Setting the Hook the only truly important component of any book: I gave it a soul.

Through the process I came to understand my disease and my life more clearly. I’m still a long, long way from truly knowing myself, or anything, for that matter, but I’m confident that understanding the past is a worthy start.

I do have a point to all this squishy philosophic mumbo-jumbo: the process of re-writing Setting the Hook made my publishing decision easy.

I no longer cared a great deal about achieving the lofty hubris of knighted credibility bestowed by traditional publishing. That doesn’t mean that I don’t still fall back to old, bad habits and patterns, such as subconsciously defining the worth of the book and me as a person in terms of sales or reviews or critiques.

Don’t get me wrong, I love a good review and hate a negative one, but I try to catch myself, not lose perspective, and – occasionally – I’m even successful.

I decided that it was pointless to split my focus between improving Setting the Hook and trying to break back into the New York publishing world, which at a minimum would delay the project for years, might go nowhere, and would in no way make the book any better. I was confident in the story and wanted to own the entire publishing process without the concern of an outside editor muddying the creative or marketing waters.

There was no question in my mind when the re-write was complete. I can open Setting the Hook today, a year and a half later, and find nothing of substance that I would change. That did not mean, however, that the copy editing was anywhere near finished, which was my first lesson in self-publishing – despite being my second book, I hadn’t a clue as to the depth of the publishing process.

I re-read word by word, line by line, page by excruciating page the entire book about twenty times making copy edits. My third to last effort yielded about fifty changes; the second to last about twenty; and even the final run through picked up probably five or six errors, things like a stray “em” dash where I had decided to use all “en” dashes for consistency and to resolve pagination issues.

Scrupulously re-reading twenty times a manuscript that had essentially been complete for ten years is not easy work.

Marketing is all on me and it has been daunting, fun, tedious, embarrassing, and endless. At first, nothing seems to gain traction, and then, somewhere between the second and thirtieth independent marketing plan, it suddenly becomes clear that no single effort will ever miraculously gain traction.

Over the past year and a half I have given presentations on early technical diving and the Andrea Doria to as few as five and as many as 150-200 people across the country (fun), done many book signings (embarrassing and tedious), built a reasonable following on Facebook and through a web page (fun and tedious and embarrassing), received eight professional online and print magazine reviews in addition to Kirkus (all of which have been miraculously positive), and many, smaller scale marketing attempts (daunting), with an end result of steady but not particularly earth shattering sales.

Book sales revenue has paid for all my travel expenses over the past 18 months with a bit left over, which is still more than I made going the traditional route and selling 26,000 mass market copies of Angles of Attack. If Setting the Hook never really takes off as a commercial success, I’m just fine with the memories and have absolutely no regrets.

I’ve read that it takes two years of committed marketing if a book is to have any real chance at breaking out. It might be more difficult for non-fiction; I don’t know. I plan on sticking it out with active marketing for this final six months, and then let the chips fall where they may.

I am proud of my latest book, but far more importantly, I honestly believe in Setting the Hook’s value independently of any commercial considerations.