Saying goodbye to Ron Akeson – my final lesson

Death is the great unknown, a fact that if viewed objectively by anyone who enjoys adventure would seem to be a final-days positive, a climax of exploration to cap life’s end with a curious optimism, if not actual excitement.

But—as we all know—the unknown, uncertainty in general, is scary stuff. The reality that death comes to us all may be superficially accepted, but that has little to do with the denial most of us live with every day.

If you have read Setting the Hook, then you are familiar with the name Ron Akeson. I don’t believe that Ron lived in such denial, but rather took the risks of what he was doing underwater seriously and thoughtfully.

Ron Akeson was the owner of the “Adventures Down Under” dive shop in Bellingham, and as my trimix and technical diving instructor in 2000, he played an integral role in bringing my long dormant deep diving skills up to modern standards.

Those astute readers will have noticed the uncomfortable use of past tense in the above sentence. Ron died one week ago, much as he had lived – diving. I honestly believe this, despite the technical medical perspective of death coming days later in a hospital while in an induced coma.

I did not know Ron well. He was a difficult person to get to know, and our conversations in 2000 were almost exclusively about the dive training track. He was an excellent instructor, which really means that he was an open learner, willing to pick up what he could from whoever was able to provide a tid-bit of additional knowledge.

It wasn’t until while at a DEMA (Dive Equipment Manufacturers Association) trade show in Las Vegas, a year and a half ago, that I had my first “real” conversation with Ron. He walked up to me out of the blue and asked real questions and listened intently while I gave what I considered thoughtful, honest answers. Maybe the entire 2000 episode had been a warm up or try-out of some sort before he committed to getting to know me better as a person. The same might be said of my attitude toward him.

That doesn’t mean that I lacked regard for the man, much to the contrary, I admired and respected him greatly. It just seemed that once technical diving was no longer in my future, we had too little in common to keep in touch.

Ron died one week ago during a “routine technical training dive.”

There is a saying in the Navy: “Never go on a routine training mission” because that’s where the overwhelming majority of accidents occur (visualize headlines: “The mishap pilot was on a routine training mission at the time of the accident”). It’s an unsettling truism that holds water for diving as well.

Perhaps it points to the unnerving fact that the vast majority of us will not go out in some blaze of glory, but instead will succumb to some dreary illness or simply life’s tired story’s denouement. What possible meaning can be derived from that?

Although I don’t recall the actual substance of our hour-long conversation in Las Vegas, I clearly and distinctly remember the tone: honest, direct interest and engagement. Ron and I finally connected, if only briefly.

So what is one to take away from this? As Ron was being readied to go off life support in what has to be a sister’s most difficult task imaginable, I was doing chores and thinking about our talk, the tone, trying to figure out the inner core of this amazing individual who I had thoughtlessly brushed aside from my focus fourteen years earlier. I surprised myself with an unplanned, genuine smile.

And that, in my opinion, is the real lesson. It is not in the act of dying that we intercept meaning or obliquely touch upon purpose, but rather through the vibrant, daily connections with other living people that we might catch a peek at life’s essence.

I learned to honestly cherish human connection (again), a lesson as valuable as it is inevitable to be learned and re-learned countless times.

That was Ron Akeson’s final lesson to me.

A damn fine day…

Today was interesting, initially in a bad way, but I managed to turn it around and pushed the PD flat on its back (for a time…).

The last two nights I have experienced extraordinarily deep sleep (for me), deep enough to perhaps dream, even, which is indeed a rarity these days. Unfortunately, the reason behind the welcome slumber was not from the “good” category: after much reflection, I can only attribute it to a near collapse from exhaustion.

The past several months have seen a quite rapid acceleration in symptoms after almost two years (maybe…) of relative stability: so long as I stuck to my medication regime religiously, I could reasonably factor in such anomalies as a particularly hard work out or an unrelated stressor and get fairly predictable results. Not always good results, but at least predictable.

Recently, I have lived 24 hours a day between the two “off” extremes of Parkinson’s.

1. The over-medicated induced dyskinesia wiggles and odd movements and;
2. The under-medicated dystonia of a shut-down of my right side, initially manifested through a severely painful “muscular contracting claw” of my right foot and wrist muscles (actually, a little bit of my left side is shutting down now, too, so I got that going for me ).

In a truly novel juxtaposition of what I would have thought mutually exclusive symptoms, for the final 30 minutes or so of transition from one to the other (these range from “soft landing” transitions to at times 5-6 brutally intense daily swings), I am currently experiencing both symptoms of over and under medication simultaneously.

The short conclusion to draw from this is that, as the French would say, “I’m fauxed” until and unless Deep Brain Stimulation works (scheduled for September).

That certainly does not mean that I cannot function, however. The tricky part is handling the psychological accompanying symptoms of both “off” conditions: over-medication is fatiguing and difficult on the body, but the induced mood is invariably positive. Not so with under-medication. With the dystonia comes severe, nearly un-relievable depression and ennui (indecisive listlessness).

Only nearly un-relievable, however, and that’s what made today so interesting (good interesting). After spending the morning bringing Jared to get his braces removed  and doing house chores, the depressing fatigue was so great that all I could think of was laying down and giving up (for the day, that is).

I had two alternatives.

First, up my medication with the certainty that in an hour I would be severely over-medicated, but at least in a decent mood and capable of being marginally productive, or;

Second, try to suck it up, maintain the medication regime I’ve established (which still puts me over, but a manageable over-medication), and try to literally power my way through for 30 minutes until my “normal” dose.

Please let me insert here that sucking it up sounds like a good idea when detached from the reality of the situation, but it was one of the hardest things I’ve done in my life. I only attempted it because I got good and pissed off, angry like I haven’t been for a very long time (ask Jared…).

I did it.

I actually weed-wacked (a nightmare of wrist intensive, loud, back-hurting labor) the entire yard for the first time since last fall (not pretty, both yard and me). I managed to power through the dystonia, limping, but never relinquishing the weed wacker or having to rely on my canes, and got through to the other side.

The rest of the day was spent on the slightly to moderately over-medicated side, I got lots done around the yard and on the boat, and even customized a T-shirt to wear to celebrate the event real time (all while blasting classic rock). If truly interested, please email or text and I’ll send you a photo, but the T-shirt is not suitable for children (well, only for one child – me!).

It’s 7:25 pm now, and I just went through a transition while writing this (more sucking it up). With a bit of luck I will be able to carry this experience with me for the following days, weeks, and months, but nothing is ever as easy as it seems. Still, it was a very difficult and a very good experience. It will be interesting to see how/if I sleep tonight. It is now 8:30 as I post.

When all is said and done, it was one damn-fine day.



So I lied a little…

The military was supposed to teach me never to “put myself on report,” not to admit to an error: if an act were truly an egregious offense, you would be caught. Otherwise, getting away with something was fair game. More honest tax payer money wasted on my military education…

If you look back through these blogs to the ancient date of Friday, January 31, 2014 (yes, only two and a half months ago), there is a well-meaning blog with the inspirational heading that reads:

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

Well, mea culpa (it appears Latin is destined to be my second language, maybe my first), again.

It’s not the points made that a now sage-75-days-older-in-life-experience-me takes issue with, but rather the embarrassingly specific examples used in “Pete’s perfect universe.” Here is what it (i.e. “I”) said:

“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.”

Anybody who has taken on real personal challenge knows that it’s not the direct, in your face threat that will get you; it’s the simple things, in this case the statements uttered in apparent total ignorance of life’s recent and not so recent jovial retributions. Here is what happened.

In February, I traveled to the Midwest’s largest Dive/Travel Expo, “Our World Underwater,” to speak on the Andrea Doria. I was scheduled for two separate, 35 minute, no-notes PowerPoint presentations, each slated for the last daytime seminar slot of their respective days, Saturday and Sunday (start time 3:15). I jumped at the opportunity.

I knew this would be a big problem five months earlier when I received the invitation to speak; 3:15 Midwest time – 1:15 pm West Coast time – was my absolute lowest point. On most days, I could barely move for the hour before and after 3:15, but actually believing that snapshots of life hold true five months later – at least if you have Parkinson’s – I replied in the affirmative.

I never mentioned a word about the timing of the event to my gracious Midwest hosts, who would have undoubtedly made other arrangements to accommodate me if they had only known what an intimidatingly exhausting challenge it presented.

Things change with time. So what was the end result?

I spent months attempting to adjust my round the clock medication routine, altered my life style in an attempt to change my severe “down” time by just one or two hours, and actually tried to live “right.” Here’s what happened.

Saturday: I give a reasonable presentation, which is great, because there’s a bunch of world reknowned long time deep wreck divers in the 100 person crowd who are well versed in what the heck they are talking about, as opposed to a long dormant pretender like me. And they are not unkind in their critique, for which I am genuinely and eternally grateful.

Sunday: I hit a wall. Despite not going to the film festival and instead catching an honest 3-4 hours of sleep (pretty much a normal night), I got big-time off mid presentation and literally fell apart. I didn’t quit, but it wasn’t pretty. The good news was that there were only 25 in attendance. The bad news was that they were 25 great people who had paid good money to listen to me, a fact which – all kidding aside – simply awes me, disappoints them, and teaches a good lesson.

The lesson learned was one I thought pretty much nailed down after writing Setting the Hook: Soulful challenges are not static and go the direction that is right, not necessarily the one that is desired.

Why bring this up now? As an aspirant to higher primate decision making skills, I made a call tonight in regard to the first personal challenge listed in above embarrassing quote:

“(I) often run public meetings, and have given two graduation speeches (a third one is coming up in June) to about 5,000 people.”

It became clear to me that my Parkinson’s was a distraction at best during school board meetings and my communication skills (verbal) were getting untenable. I stepped down from the Presidency, but opted to stay on the board (wait for it, here’s where I learn something…) until something else changes to make that a bad idea.

And I feel great. Folks (not that many – it’s a school board meeting, for crying out loud!) got to see how things really are for me, I sort of relaxed and only expended a modicum of energy so as not to freak out too many people, and the meeting was far more effective than if I had been still running things. That was the reason I got involved in the first place, to do good (just like Underdog) and now my place has changed, and that’s all very, very good.

Oh, and did I mention that I’ve got a new challenge? One that involves long hours on the boat with the new sonar two of my best friends gave to me (yeah, I know how to play this…)? Stay tuned, probably no diving for me, but who knows where it will lead…

Life can be a shaky, writhy, pain-in-the-butt, but that’s part of what makes it so good.

My girl

From the “don’t take life too seriously” department.
Dedicated to wreck divers everywhere of all generations.
(Warning: if you lack a sense of humor, in my rarely humble opinion, you are not a true wreck diver and should read no further…)

And there are ships afloat,
and ship’s a-wreck,
Ships without planking,
beyond wooden decks,

Ships so big they fill the sea’s sky,
Wrecks so deep they tempt all to die,
Cluttered passages stacked high with the dead,
Sharpened steel edges eager to shred,

Holds of oblivion dark as the sun,
The lingering brilliance of past flash of gun,
Littered with soulless, pitiless ghosts,
Enticing finned warriors, the most evil of hosts,

The dice are rigged; the game fully stacked,
Zero percentage of emerging intact,
the cocky young warrior pulls into the trap,
a Stygian hell with no help of a map,

The silence roars, blood coursing in ears,
Instinct demanding most primal of fears,
Raise the light slowly with finger on switch,
And with eyes fully open scream, “Gonna make you my bitch!”

With apologies to Ricky Bobby of the movie Talladega Nights for the rough paraphrase of his son – Walker’s – delicate praise of his father, “Dad, you made that grace your bitch.”

Clarity in purpose

The instinctual allure of clarity in purpose can lift the spirit to the pinnacles of human achievement or drop the soul into a pitiless hell, never hinting which direction until arrival. And maybe the direction doesn’t matter; maybe they represent identical experiences come full circle in life’s continuum.

War, in my opinion, is life’s clearest example of clarity in purpose, and examples are rife of fighting men and women climbing or falling down their unchosen paths. Despite the best efforts of political hacks and wonks of all persuasions in explaining away natural behavior, war in its purest form of evolved design alters the contrived complexity of everyday existence in the flash of a neuron:

Kill or be killed.

Straight-line logic, no explanation required, just the acts of a millisecond experienced in a place where time has no meaning. Purely honest, deeply and soulfully known: horrific, beautiful, simple – in a word, real.

How or why one arrives at this point is absolutely irrelevant, morality becomes dismissively quaint, time is meaningless, and millions of years of nature’s honing sharpen survival’s lance.

The moment ends as if never existing, and with crushing convention the weight of life’s rules and games creep and claw their return in full effect. But war is certainly not the only place to find such clarity in purpose. Myriad experiences might serve as host.

But one type of vehicle to arrive at clarity in purpose is different from all the others in basic substance: that which is chosen. The choice to search for laser-specific purpose might still come through war (mercenaries, lifer combat addicts, etc…), but also via venues of high adventure. To choose to go to this place, assuming any sense of what is being truly risked, might just explain one of the most enigmatic questions of why “extreme addict” climb the mountain, dive the dive, or jump the cliff.

Maybe it’s because, despite societies best efforts to put premium value on the complex and contrived, it is really the simple that we seek; the binary answer immediately, decisively, and unapologetic offered – kill or be killed; survive or die.

There is a word, one word that does justice to the instantaneous liberation and subjugation of the binary challenge – powerful. Perhaps so many misguided titans of industry have it backward: they seek power to determine the clarity of purpose, while it is really the other way around.

In the end, for those searching for answers, nouns – like “power” – won’t do the trick; they miss the point entirely. In my opinion, it is the adjectives, such as “powerful,” and used only in a description other than to one’s silly physical abilities, that might just steer us in the right direction.


Savage simplicity

Growing up for six years in Athens, Greece allowed me to spend a lot of time underwater long before first strapping on a dive tank. Free diving and spear fishing were starkly honest expressions of young adventures in body and spirit. Our family friend – Anastas – taught me how to do both at age ten.

Anastas lived nearby only in the sense that all English-speakers within five miles or so were loosely considered “neighbors” in the sprawling Athenian suburbs. Anastas was a World War Two hero, professional pensioner, and exhibited the obliquely idealized model of Greek manhood upon which the movie “Zorba the Greek” was based.

The first two descriptors of Anastas were never in doubt, and whether or not his consistently strident claim to Zorba’s bona fides was actually true, it certainly could have been true. Anastas overflowed with a passion for living. His favorite expression in self-taught English was “To be in life”: to live in the moment and wrestle the day’s chores with rippling biceps from obscurity with fervent energy as if his very life was dependent upon their completion. And maybe it did; he was in his late seventies at the time.

Move over Homer; Anastas was both actively living and telling his personal “true life” stories to all who would listen and many who wouldn’t (sound familiar?).

With no access to a scuba diving class until our return to New York, my obsessive routine of free diving was pure and free of internal conflict. Hours floating and miles of swimming and submerging tied each summer day into a cohesive package that was never long enough, but also seemed to strangely never end.

There was no option of a wetsuit, weights, gauges, dive bag, or real stringer, and none were missed. Never having experienced these luxuries meant putting them outside my realm of conscious thought. Armed with my trusty olive-oiled Balco double rubber-banded spear gun and a total absence of reluctance to swim to an often distant shore with the catch, my only other companions of gear were a simple mask, fins, basic snorkel and a bathing suit that might as well have been tattooed on.

Early on, my father had pulled me aside and asked that I snorkel closer to shore out of concern that he could not reach me in an emergency. He realized that he would still be compelled to try to affect a rescue, and would probably die in the attempt. I ignored him, never had an emergency, and he seemed to learn to live with the situation.

I relished the unfettered attitude of youthful certainty, a streamlined thought process that flowed effortlessly into a cleanly executed pike before slipping silently in a perfect vertical toward the bottom and my prey. Hiding in a crevice, the small (compared to Pacific Giant standards) octopus would lie still, barely exposing evidence of its presence from a rocky lair. With the bottom sixty feet below, I would repeat and repeat the free dives until the poor mollusk finally gave in and I could shoot to the surface, fighting the tentacles as they wrapped around my arm in an attempt to “bite” me with its sharp beak.

Occasionally the octopus was successful, but more often than not I won. I would reach behind the head, break through a membrane, and literally turn the octopus’s head inside out while aching lungs arched for the surface air. One move of my bare hand and the octopus would be gutted and still, the only evidence of life being the suction marks lining my arm as I broke the surface a few seconds later.

Not a very pleasant image and definitely not the sort of thing I would repeat today, but those were truly different times. We always ate the catch, and the method was taught by Anastas and was sanctioned by common usage. It was pure art in its savage simplicity.

During those years I also learned about human death, having witnessed while snorkeling back to the beach the immediate aftermath of two drownings as the victims were towed ashore. These crudely vital experiences proved to be life lessons so basic yet rarely found in today’s civilized America.

But my real dream was to become an actual scuba diver, with compressed air tanks and all the complicated attachments. At times, the impatient urge could physically hurt; hadn’t I proven myself, put in the time? But a dive class was not available, and it wouldn’t be until I turned seventeen that I became a true, Cousteau-ic diver in 1979.

All those years of free diving were hardly wasted, not in my proficiency as a “real” scuba diver, or as a part of my character. As we turn the corner past middle age, our search for increasingly complicated challenge can bypass the most simple and honest bars of actual achievement. Be careful what you wish for; you might just get it…

I regularly try to remind myself that today’s most basic goal attained is quite likely tomorrow’s crown of reflection and satisfaction. It helps to settle me. After all, it’s always been that way.

The good, the sad, and the writhy

The old saying to “try to find the good in everything” may be cliché, but in my opinion it’s damn good advice as well. I find myself relying on it increasingly frequently as my Parkinson’s progresses; one can learn a lot about people and their interactions—I believe that’s called sociology—if in an uncomfortable situation.

The alternative is to believe, as Jerry Seinfeld put it, that “people: they’re the worst.” To default to an automatic interpretation that refuses to look beyond a facial expression for understanding invariably leads to seeing only the bad in folks, and let me tell you, that “is no way to go through life” (a final Hollywood quote: Dean Wormer, Animal House, minus the “fat, drunk, and stupid” part).

Please let me explain.

My wife, Laurie, and I just returned from dinner at our small town’s (population about 30,000) finest restaurant. Of course, we were purposefully underdressed and we sat at the bar, but we ate the same great food all the same. The bar happens to adjoin the grill where the chef prepares the meals with dramatic flair and where most of the wait staff congregates and–well–waits.

I was fairly normal, okay, normal for me, when we walked in, but I soon hit a familiar daily ritual when my body began the rhythmic writhing and rolling of dyskinesia. If unfamiliar with the term or look, think Michael J. Fox when at the worst of his involuntary motions and facial expressions. It’s not inherently painful, and with great effort it can be minimized temporarily, but never truly controlled.

In the best case one wears the look on their face of great effort being expended while sitting and appearing to fidget under the influence of one too many drinks. Then I had a drink, my desire and ability to control it diminished, and I went to half throttle in my control efforts. After all, we are eating out and paying a bunch of money to relax (and avoid cooking dinner), and expending tremendous effort for 60 minutes is definitely not relaxing.

Here’s where the fun observations start. Waiter one, our primary server, a 30ish guy with premature grey or white hair, looks at us with obvious confusion—as all in the small restaurant do—but also with a barely discernable touch of mistrust or disdain or something clearly negative, at least clearly negative to the practiced observer (i.e. me). His look eventually softens almost imperceptibly by the time he sees his tip (20%), but the base emotion is still evident.

Pan left to a young, blond waitress, who has a completely different reaction. The confusion in her look leaves so quickly that I barely notice it, and it is replaced by one of those truly rare looks of automatic acceptance and warmth. Her words to us are no different from those of our primary waiter (she seems to anticipate our next request and interacts with us as much as our main waiter), but the tone and look in her eyes are a world apart.

And lest you think me simply susceptible to the wiles of a pretty face, Laurie agrees with my assessment.

As learned from countless such dyskinesia impressions, I realize almost immediately that she is one of the rare ones: she either has a close friend or relative with a movement disorder, or is of such extraordinary empathy that she keys in automatically to the essential differences between a drunken threat and someone with a movement disorder.

Two people, identical information, initial confusion by both which is never actually answered (i.e. I didn’t tell them I had Parkinson’s), and two responses as far apart as can be imagined.

Back to finding the good in everything: everyone who noticed us in the restaurant, in other words; everyone, had reactions I noticed somewhere between these two extremes. None of them were ill intended, they were first, involuntary reactions to a common visual scene.

Here is what I learned tonight (mostly learned again, but reinforced): don’t judge a person by their first reaction to any situation that is potentially stressful. These waiters had to serve me, it was their job, and they did not know for certain if I was an axe murderer on brief hiatus for a bite to eat or something they simply did not understand.

I say “something” purposefully because that was the most difficult lesson for me to first accept long ago. When people don’t understand your basic make-up, they instinctually revert to the modern rendition of “fight or flight” as evolved by “civil” society. As a practical matter this means ignoring the person. Initially, long ago, this brought me more pain than I care to remember. Now I understand why they act this way and I try to ignore them.

I look back in my life and realize that I’ve seen this disparity in reaction before: every time a friend or family member has died (and there were a lot in the friend category in the Navy), the reactions of other friends and family members has spanned the same variety of expressed emotion, but usually with extremely odd twists due to the intrinsic discomfort of the situation. I tried not to judge those folks on the spot back then out of some intuitive feeling that it simply wasn’t fair, and now—through my experiences—I know that I was right.

Human nature is a wonderful tool to get at the good in all of us. I honestly don’t feel any differently about our two waiters this evening; after all, I don’t know a thing about them. But I do know emphatically that I do not know.

I left the restaurant as I always try to do: maybe swaying, staggering, and a visual mess, but at least I know that that lopsided expression on my face is a smile and that I just had a great time.


New world

Enter the light uncluttered,
Tableau unfiltered, fresh,
Eyes leaping shape to shape,
Thought is curious, but familiar,

Logic blessedly beyond ken,
Free from freedom; empty of cold,
Wonder abounds without convention,
Unburdened with structure or form,

Thrust into powder’s odd embrace,
Soft without caring or passion,
Tempting to learn, absorb, to ask,
Novelty’s newness awes in brilliance,

What volunteer’s insane choice,
To trade warmth for curious,
Looking leading, soul searching,
Lost forever in a heartbeat,

Honest warmth returns slowly,
Timid, unsure, growing and gaining,
A riddle to unwind;
A life to live.

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:

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.



Pain is nothing,
Generality of convention,
Relative term, sentence,
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.