Prevailing Over Parkinson's: A Year in Review

It is with mixed feelings that I come to the end of 2009. There have been no breakthroughs in terms of finding a cure for, or alleviation of, Parkinson's disease despite some continuing promise in medical research and pharmacology. The PD continues to squeeze into more details of my life (I got an electric toothbrush for Christmas, which doubles as drill and or engraving machine when I change the head), and some of the aches and stiffness I am feeling now were not present in January of this year. I have become increasingly left-handed (eating, drinking and most fine motor skill tasks). Functionality has decreased somewhat, requiring me to adapt my schedule for more time to get ready for things (buttoning up the left sleeve of shirts is a frustrating challenge). I need more time to complete tasks (I often watch people watching me fill out a form in my stiff, painfully slow and ever-shrinking cuneiform printing, like observing a 5 year old write a sentence).

The tremor, the embarrassing albatross about my neck that it is, has crept deeper into my frame despite the fighting back I have done. It has advanced its occupational force into my ever-shaking right arm and leg (making simultaneous egg beating and toe-tapping permanent past-times). And days are increasingly filled with voices that whisper their evil, if irrefutably realistic, prophesies, "It will only get worse you know!", while the nights are spent in full mixed martial arts training.  The combination of aging and Parkinson's leaves me feeling the acceleration of time passing in ways I cannot explain.

But the year in review has also been remarkable for so many reasons. There is cause to celebrate the year now in the books, as a playing season for a sports team. Yes, we had a few losses, but we were well over the 500 mark, with the "wins" far out stripping the "loss" column. And there was improvement in learning how to play the game "Living Positively With Parkinson's".

A few of the ‘wins’ were:

1. Completing a 4 corners trip around the continental USA by motorcycle (45 days and 23,000 kms – 15,000 miles; 30 States and 5 Provinces).

2. Starting to blog and hoping that it is a creative and cathartic form of encouraging communication.

3. Meeting great encouragers like Big Jerry, Wobbly Bryn Williams (http://www.wooblywilliams.com/), Jon Stamford (http://www.wobblywilliams.com/sol_blog.aspx Slice of Life on Wobbly's website), Tom Isaacs (also on Wobbly's site) and other bloggers and friends who share my commitment to play out the personal PD cards we have each been dealt with the "never give up" attitude.

4. Continuing to be a part of the supportive team at my firm (www.kuhnco.net) where we together pursue our common mission to serve as trusted problem solvers.

5. Experiencing good times with family (especially my grandson, Patrick) and friends, who never feel sorry for me and yet continue to seek to understand and support me in this uninvited challenge.

6. Spending some great times with my best friend and wife of 35 years, who loves me despite my crotchety and cranky moments (okay, maybe more than ‘moments’) when I am angry or depressed about my terrifying ride on the slippery slope down dopamine mountain.

So, as this year winds down, I find myself feeling blessed. And PD or no PD, I would not exchange my life for that of anyone else. Despite how it may feel sometime, I know that God has been very good to me.

Ever Consider Acupuncture?

Deborah had never treated someone with Parkinson's disease, but I hear this is true of most acupuncturists. In some ways we were even, I had never experienced acupuncture either. It is mostly the word picture in the name that puts me off. Anything involving pins and the word "puncture" does little to comfort me.

My experience with acupuncture, and my relationship with Deborah, began as a random thought. That thought germinated into a greeting. Then the ensuing casual discussion sprang into a momentary suspension of disbelief, which grew into a commitment to experience the unconventional. Let me explain domino affect that led up to this unexpected passage into the somewhat sublime.

On a recent cruise, and before we even left the Port of Miami, I was wandering through the “Spa” area of the ship searching for the fitness area. I had promised my trainer back home that I would exercise every day and eat sensibly while on board. That commitment, despite being made in earnest, seemed to evaporate in the Caribbean Sea air. Deborah, a young, woman with blonde hair, did not fit the part of an eastern healing practitioner. But she was standing in a direct path to the treadmills and stationary bikes handing out pamphlets promoting the ancient art of acupuncture. I simply said, “Hi.” But as I glanced too long at the glossy trifold brochure, my curiosity went into overdrive and I found myself thinking, “Could acupuncture help my PD?” Before I could restrain that out-of-the-box idea, I was actually verbalizing the question and became engaged in a conversation with Deborah about the merits of this eastern therapy. She was perky and persuasive and, despite inadvertently admitting some ignorance about Parkinson’s, she suggested that there was evidence that acupuncture was able to help alleviate the symptoms of the disease. The promotional price seemed low enough to justify an experiment and I thought, “Instead of getting a massage, I may as well give this a try. Why not? When would I ever do this at home?” At that moment, with some faint fluttering of hope and anticipation in my chest, I signed up for one session to start at 9 pm that night.

Immediately upon stepping into the small candle-lit room, I was aware of that familiar professional skepticism creeping into my thoughts. The aura was more like one of those aromatherapy advertisements than a place of medical discipline. Deborah, who tried to convince me that she had been at it for many years (5 to be exact), explained the procedure. But she seemed considerably less convinced that it would do much good, at least without numerous visits (at the higher price of course) before the cruise was over. I suspected that she had sought to verify her prior enthusiasm by a quick follow up Google search of ‘Parkinson’s and acupuncture’ and realized that she might have oversold the curative potential somewhat. Regardless, we were both committed to the experiment, and I ultimately found myself laying face down in the quiet room, face pressed into a donut cushion and naked from the waist up. Soon enough she began traveling down either side of my spine with her fingers, tapping pins into seemingly random locations like pushpins in a map marking the route taken. The nagging universal question about acupuncture had been answered. You feel it but it does not hurt much. I could not see the needles even if I opened my eyes but imagined them sticking out of my back like a porcupine with a Mohawk haircut. The pin-marked journey down my back took only moments, after which the lights were lowered and I was left alone for 30 minutes.

The sudden thought of a fire alarm crossed my mind. How would I get off the bed without burying the pins permanently in my spine? How could I escape the dimly lit room to make a mad rush for the lifeboats, all the while trying to protect the small nails in my back from being hammered into place by the crush of the panicked mob? I surmised that Deborah would not be there to assist with hasty extraction of the needles, as in all likelihood she was busy in another tiny room poking and pricking another half-naked patient for the same promotional price I had paid.

When Deborah returned to see if I had succumbed due to loss of blood, or suffocation from the candle fumes, she politely asked how I felt. I sensed she was just pretending because before waiting for the answer she again tried to convince me that future visits were needed before there would be any noticeable benefit. I was a little concerned when I hesitated, given that she had not removed the tacks from my back. As she pulled the needles from my skin and I extracted my numb face from the donut-shaped pillow, the pinprick of hope that I had allowed to penetrate my skepticism disappeared. My short-lived optimism deflated like a balloon wounded by a chance encounter with one of the pins.

When you have a disease like PD, or any other serious ailment I expect, and the medical profession offers little hope except symptom alleviation options…with their risks and consequences, you consider alternatives. My experiment with acupuncture was worth the price and while this therapy may have helped others Deborah did not convince me of its merits. But there is still room in this skeptic’s mindset for selective consideration of unorthodox treatment of Parkinson’s. Why not? Stay tuned for my next experience: the hyperbaric chamber.

Do You Really Understand?

I listened carefully from the other room where I was enjoying time alone with my one year old grandson, Patrick,who kept up a steady string of very meaningful blurble . Christmas occasions offer a cacophony of words and sounds. From the unrestrained and gleeful shrieks of small children who have discovered the bounty left behind by "Santa", to the animated adult banter accompanying a game of Scattergories. There are warm words for family and friends and heartfelt expressions of appreciation for gifts given out of love. Sometimes there is a tearful outburst from an exasperated child, often accompanied by a yawn. And then there are the inevitable "discussions", that might never take place normally, during which voices are raised and opinions expressed in more dramatic and emphatic terms than might otherwise be the case. Blame it on the annual peaking of expectations, or the prevalence of liquid courage, but this season as the amazing potential to highlight our embarrassing lack of discipline when it comes to the use of words.

Perhaps this is why Christmas day left me thinking about words; specifically, words to avoid in the context of Parkinson's disease.

At the top of the list are the supposedly sympathetic words, "I understand". These words are almost always inaccurate, and often communicate exactly the opposite of what they mean. How often have you heard that phrase and silently reacted, "Oh no you do not!"?  How can someone really understand the physical manifestations of the ever-dogged PD? Even some of us who are experiencing this neurological nightmare have difficulty understanding others who share it . This phrase intended as an expression of attempted empathy is truly a presumption; a facile, throwaway line that betrays our ignorance, and sometimes our arrogance. In fact, it may be unintentionally dismissive of the person's unique experience and feelings. While I fully acknowledge that the speaker's intention in using these 4 syllables is rarely to harm the hearer, these words can easily be hurtful. Is not it more honest to admit, "I cannot possibly fully understand your circumstances... feelings... pain... fears..."?

"I understand" is a statement of fact, like saying, I understand Einstein's theory of relativity".  Applied to another person it is often, at best, an overstatement.  For myself, I certainly need to be more sensitve to my use of such phrases.

Since being diagnosed with Parkinson's almost 4 years ago now, I have become sensitive, even hypersensitive, to one simple fact: I will never fully understand another human being experience of loss or pain. Therefore, to say, "I understand" is to trivialize, or at the very least reduce that person tothe size of my own limited experience. I am not sure that healthy people understand this. Is it so easy to understand?

I know how it feels when someone who I know glibly draws his or her conclusions about my life by making that unsustainable objective statement, "I understand". My choice these days, when I am tempted to use that fateful phrase, is to replace it with, "I would really like to understand more. Is it okay if I ask you some questions to help me with that?"

All of us, even Patrick with his one-year-old gibberish, want to be understood. Rarely do people feel understood by being told that they are.

The Right Arm Swinging - Saga of Stiffness

As with many people dealing with Parkinson's disease, the arm of my affected side does not swing naturally. I must make quite the strange picture. I usually walk quite fast. My left arm soldiers on in fine form with enough momentum to propel me in circles, while the right seems to have forgotten the cadence altogether, standing at attention like one of the Queen's Guards at Buckingham Palace. Recently, it seems to have forgotten how to do a number of things that it would normally. For instance, casually throwing my arm around the shoulders of my wife while out for a stroll on one of these recent cold nights would have been natural and easy only a few months ago. Now it feels as awkward as when I was a 12-year-old in the movies on a first date. Suave and sophisticated I was not. Furthermore, the sudden pain is like someone is wrenching my shoulder out of its socket. It appears that the stiffening is setting in like Jell-O in the refrigerator; imperceptibly slow but nonetheless noticeable from time to time.

Fortunately, the “bradykinesia” (a medical term for slow movement) or “akinesia” (absence of movement) does not affect much else. In some people with Parkinson's this problem can evidence itself in an expressionless face or even "freezing" in place, both constituting awkward and embarrassing social occasions. But for me, this right arm-swinging trouble constitutes nothing more than an inconvenience.

In the great scheme of things, this is hardly a major issue. But, as with the rest of life, learning the little lessons prepares us to take on the big ones. So what can I do about it? This is a question I believe we all need to ask when faced with challenges, in my case related to my mostly silent partner, Parkinson's.

First, when I notice my right arm absentmindedly failing to keep up with the left, I can be more intentional, forcing it to perform its normal duties. Second, I can get back to exercise and stretching (yuck!). Starting tomorrow I will climb back on the exercise wagon that I fall off so easily and regularly. Third, I can see a physiotherapist about doing the right things to offset the onset of stiffness. That I will do in early January. And fourth, despite all of the Olympic fervor and fever in anticipation of the upcoming Winter games here in British Columbia, I can abandon the idea that somehow I need to adopt the pursuit of going "faster, higher, farther".

As I have stated before, most battles begin with how we think about them. We are not defeated when we cannot do what we used to do, only when we cease to do what we can do.

Snowed Under?

I did the unforgivable. I locked up the brakes and we were sliding, and not in a fun way. Only a few centimeters of snow had fallen, enough to bring cheery smiles to young children, and stark fear to those drivers who view the white stuff as evil. But sliding out of control was like being on the receiving end of a snowball with a rock in it.

I need to explain. I grew up in an area of the country where the first snowfall enticed me to scream down any semi-deserted country lane, spinning tires and fishtailing until my 1967 Volkswagen "Bug" was doing pirouettes. And even if my fearless snow bug went in the ditch, several of us young joyriders could bounce it back onto the road within a matter of minutes. But I seem to have lost my deft snow skills recently. Perhaps it is the Parkinson's, the fact that I am just getting older, or simply a lack of practice. Whatever it is, I don't seem to be able to drive like Mario Andretti on skis any longer.

Case in point: yesterday I slid (not rolled like I too often do) down a snow-covered street in slow motion, through a stop sign, then through the intersection, then to the edge of a 8 foot ditch. Fortunately, it was then that the tires grabbed the gravel under the wet snow, pulling me back to the road. More fortunately, the brown Dodge Caravan that had entered the intersection about the same time, complete with shrieking family, had swerved to miss me and passed behind me by a foot. After a quick look in the rearview mirror to see that the family van continued on its way (as opposed to turning around to follow me in order to curse me to my face), I gingerly drove on. Immediately my heart was pounding on the inside of my ribcage demanding to escape the chest of the suicidal maniac driver. Of course, my normal shaking took up a sympathetic rhythm reminiscent of our washing machine on the high-speed spin cycle. Clearly the pumping of adrenaline does not short-circuit the depletion of dopamine cells.

After a very controlled reminder by my long-suffering wife that I needed to slow down, my mind jumped to the analogy between driving too fast on snow and living a life that can far too easily careen out of control. Of course, the most obvious area of life that needs to "heed the speed" is my work. I have always been guilty of taking on too much ("overwhelmed" is what the "o" in "Bob" stands for). It was work that was on my mind that afternoon, rather than driving, which resulted in slowing too late in the snow, forcing me to brake too hard, thereby narrowly avoiding a crash under a tree for Christmas.

It is not uncommon to be “snowed under” at work this time of year, as every client seems to need their particular matter finished before Christmas, or at least by New Year's. Often the inability to shovel out from under the avalanche of assignments leaves me exhausted and with limited ability to enjoy and celebrate the Christmas season, as I would like. This year is no exception, with too many late nights and early mornings. Now I am not really complaining; being blessed with wonderful clients who trust me, and actually pay me to help them solve their problems is nothing to grouse about. But some days it seems more difficult to manage the "snow" like I used to.

Just as in my recent “cars on ice follies” incident, I need to learn to slow down. Believe me, when it comes to work, it is not easy. I feel like a sled dog that enthusiastically steps into the harness, ready to run the race, even if it is the Iditarod. To slow down, resist the “harness”, somehow feels like I am giving in to the disease, as if I was snowbound. Of course, it is not so much resignation, as recognition of reality. Parkinson's disease, like aging, does slow you down. A realist acknowledges that fact. Resisting it may be laudable, but it also may be foolish. There is a delicate balance between enjoying the snow and ignoring its dangers, thereby risking serious harm to self and others.

So I have decided that, in driving and living, I need to learn to slow down a little. But let me be clear, even if I propose to think twice about overdriving my snow-skills, I will not be giving up the occasional snow doughnut in a deserted parking lot.

In Praise of Weakness

On the fourth of a series of four double axels, Kurt Browning, the superstar figure skater, fell to the ice, spoiling his otherwise perfect display of athletic artistry. The crowd in the arena drew a collective breath as he bounced back onto his feet, regained his composure and skated through the remainder of his routine. But his smile was not quite as carefree as it had been earlier in the evening's show.

He was not the only one to fall in the filmed-for-television premiere of "Holiday Festival on Ice". Other stars, like double Olympic gold medalist, Katia Gordeeva, missed a jump as well. Seeing any performer stumble evokes a reaction. But when world and Olympic champion skaters fall the scene leaves you feeling anxious and tender toward them. Your heart goes out to them. "I know how you must feel" you whisper to yourself. All that skill, hours of practice, fighting through hardships and challenges, only to fall when it counts, in the final analysis, the grande finale. “Disappointed” is not a sufficient descriptor. Shaken, self-doubting, crushed or even devastated, may be better. We have all been there.

The humanity of each star who had a flawed performance became even more evident when the audience was invited to stay for the retakes that were deemed necessary for taping of the television show. Kurt managed to pull off the same three spinning jumps but noticeably injured a muscle on the fourth jump, causing the 43 year old Canadian ice star to limp off, shaking his head, frustrated with what his body told him. There was no disdain for the failures the skaters experienced. No faultfinding or blaming. Instead, it was a perfect display of how to handle our human frailty, our weakness.

"Weakness" is not an attractive word. But there can be depth in the damaged soul, breadth in the battered body, and toughness in the tested and troubled mind. Did you ever notice that we are all drawn to share our struggles, our failures and weaknesses, with those who share theirs? It seems as if we are not really attracted to the famous, the flawless and the faultless when we feel bothered, burdened, or buried.

No one aspires to fail or evidence weakness, but to deny its existence is to allow it to breed no benefits. Even though we avoid our own vulnerability, we see the value of openness in others. We often feel most human and alive when life squeezes us longer or harder than we would like. In that sense, “No pain, no gain”. After all, name one person who has impacted the world for good that has not been brought low and tasted the bitterness of pain, sadness or loss. Greatness has little use for the spoiled and self-satisfied among us. They are pretenders, posers, too 'perfect' to lead us up out of hurt and rejection. It seems we cannot rise up unless we are first bought down. Indeed, our true heroes are chosen from the humble and homely.  They are deeply admired and loved because they show us real beauty and how the basest "beast" can become the best and most "beautiful" of our race. Take last year's mega-hit "Slumdog Millionaire", or almost any classic story.

Parkinson's disease too can mold men and women into models of human perseverance. Sharing our weakness can draw others out, allowing them to be vulnerable; who they really are. Author, Dr. James Houston once said, “True friendship is based on the mutual sharing of weakness”.

Weakness compels us to realize our need for others, allows us to be cared for; be loved. No one in a suit of armor touches real life. It is the bruised and battered that that draw us like a vacuum and can give us courage to man the battlements of our own often beleaguered lives.

Out of the crucible comes wisdom. Raw intelligence can often be just a braggart or a thief masquerading as the stuff of life. But it is a beggar who finds bread who is driven to share the source with other hungry hearts; while the proud and powerful disdain the weaknesses.

Parkinson’s or flawed performances, we can all benefit by sharing our human weaknesses, using them to learn how to live with and stay fighting those we cannot yet conquer.

Dare the Dragon of Depression

In the relentless gray of this November day the cold rain halfheartedly maintains its soggy grip on near-leafless trees and unmowed lawns. It is drab, dreary, and the sunny days of last week, last summer and some future day seem depressingly distant.

On days like today the dragon of depression stalks me, breathing not fire but darkness on me and others who are already tired and stiff from trying to control the constant tremors. The fierceness of our Parkinson's foe often leaves us too fatigued to find any hope to re-light the lamps that dragon breath has doused. Sometimes we cannot fight the darkness, the depression caused by constant demands upon our deteriorating bodies. Sometimes we can barely grit our teeth and close our eyes to glimpse some distant light of memory or anticipation. Sometimes these stressful short, fall days and restless long nights leave us feeling desperate and alone, wrung out.

How do we face the dragon of depression? How do we battle back from doom-filled thoughts that discourage and disturb us?

I am but an early onset traveler on this narrowing road called Parkinson's. I am not dominated yet by symptoms, but still challenged to fight back harder every day. But I do know that 50% of those who deal with this disease will have to battle the dragon of depression. Already I have felt the cold breath of the dragon trickling down my spine from time to time.  I needed a battle plan, a strategy, and a weapon. So far I have chosen those set out below.

While seemingly trite, my overarching battle plan is to 'take each day as it comes', which, as those who have tried know, is much more difficult than it seems. When dealing with despair I seek to avoid the anger and frustration that follows the thoughts of how I got here. Why me? Why now? Who did this to me? What could I have done to stop it? In the darkness a rearview mirror is helpless, and lends itself to paranoid reflections. I cannot fight the battle today by focusing on the ones that could have, or should have, been fought yesterday. Likewise, tomorrow has not yet rallied its enemy forces against me. Fear of a difficult future does nothing but sap the energy I need for today's contest. I must face only the fight before me! I believe I have what it takes for that.

My strategy is simple: learn to not fear the darkness, take solace in its silence, embrace it as a friend who can teach wisdom about who I am and how to meet the challenges, present and future. Running from or in the dark is dangerous, and panic leads us nowhere. It is not the night that need be feared. It is the fear itself that leaps inside of us, our breath quickening as we drop our guard and run headlong to escape something we carry with us. The preferable path to take is to wait, accustom our eyes to the darkness, and move deliberately through it, observing the directions that are best to take. It need not be a journey taken alone. Friends, be they professional or personal, are often necessary companions. We will find our way out.

The weapon I attempt to employ was reflected this week in a card I received from a friend in the legal profession who stated that this blog reminded him of the old Chinese adage, "It is better to light a candle than to curse the darkness". We do not have the power to convert the night to day, to control the sunshine, to banish the gloom and darkness. But we can light a candle. And wielding its tiny flame we can keep dragons at bay. There is always hope if we but seek it. For some it is the hope of finding a cure that lights their way through the darkest hours. For others it is a faith that no matter the difficulty there is a purpose in it all. As it says in the Bible, "... we do not lose heart... we are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted but not abandoned; struck down, but not destroyed... therefore we do not lose heart" (2 Corinthians 4).

So, as the winter wrestles warmth away and sometimes leaves me weary and overwhelmed, I will sit quietly sipping a glass of Pinot Noir with my wife, light a fire in the fireplace and determine in that moment to let the flames defeat the dragon.

Parkinson's Under the Sea

Flipping off the small boat backwards into the turquoise Caribbean water I entered a world that rendered Parkinson's disease momentarily meaningless. While the air and the water had similarities, both being approximately 80° Fahrenheit, and the 97% humidity only 3% below 100% liquidity, they had many more differences. The silence and serenity of the underwater environment has kept me coming back since gaining certification in 1997. Granted, I have chosen to limit my scuba diving to warm waters, which in turn restricts these experiences to no more than once or twice a year on average. But the freedom and freshness of these adventures remain inspiring.

After battling back from the virtually lifeless existence that had resulted from my cold, when we docked at Grand Turk (the Turks and Caicos Islands), while not 100%, I was ready for my last chance for an underwater adventure. It was too late to join the scuba tour arranged by the cruise ship, so my brother-in-law and I took the first available taxi to an island dive shop I had contacted through the Internet. Two thoughts ran through my mind as we drove the short distance to the address I was given, viewing hurricane damage and a definite lack of commercial sophistication along the way. First, would this be a reputable establishment or a literal one-way voyage to the bottom of the sea? Second, as we only had a few hours before our ship left the tiny island, how could we be assured of getting back on time?

What we saw upon arriving can only be described as "under construction". We were silently acknowledged by what appeared to be a "construction crew" of 4 or 5 native island dwellers who simply stared at us as they went about some indiscernible task that was apparently not pressing. We entered through the low doorway crudely marked with a hand-painted sign, "DIVE SHOP", only to find the converted beach shack apparently deserted of any occupants. The little voices inside me began competing in volume and urgency, with one shouting, "it will be fine", while the other sounded a full alarm, "danger, danger". But the inner screaming match ceased when we heard a toilet flush and saw a door creak open to disclose a blonde woman in her early 40s, who, obviously embarrassed, welcomed us in a refined but cheery English accent. What followed was reassuring as we were fitted with top quality diving equipment and introduced to our dive master, Smitty, who appeared quiet but confident, having been a dive master around this island for his whole life. Additional comfort was given as the dive shop owner assured us that Smitty would deliver us directly to the cruise ship dock in plenty of time, and that the best diving was less than a 15 minute boat ride away.

The lead weights buckled around my waist, the heavy life-sustaining canister of air strapped to my back, the incredibly awkward fins that extended my feet some 3 times their normal length, and the opaque vision through the diving mask all seem incredibly cumbersome before I hit the water. But this discomfort was erased by even a short-lived existence under the waves; the stuff of surreal science fiction. All the gear that distracted me moments before becomes weightless as I slowly submerged, descending 30 feet to the crushed coral sand and a world far away from normal life. Every 20 feet or so my eardrums remind me of my too recently clogged nasal passages, but by persistently grasping my nose and puffing up my cheeks with captured air I was able to equalize the pressure and descended without further pain. Our small party soon dove down the face of the nearby coral wall, stopping at our maximum depth of 90 feet, although the precipice continued precipitously into pitch dark down a further 7500 feet we were told. I am reminded that I am a stranger here as my mask squeezed onto my face under the increased pressure, forcing me to blow air out through my nose. After a few anxious moments of drawing air through my mouthpiece, I relaxed, breathed deeply and with long intervals, like the swells of the sea above me.

Adjusting the amount of air in the buoyancy control device to keep from plummeting down the “cliff” I began a leisurely horizontal swim, drifting and rocking with the tidal underwater current. It was really more like a slow drunken stroll in a giant aquarium filled with coral, white sandy expanses and marine life of every description. There were immense sea turtles (okay, one sea turtle) swimming effortlessly in complete contradiction to their earthly maneuvering, large lobsters scuttling from one clump of coral to another to escape our presence, and innumerable multicolored tropical fish hanging and turning slowly like neon lures of every size, reflecting the sunlight that stabbed in shafts through the sea, each one playing unashamedly as they proudly promoted their own particular patterns and shapes.

Parkinson's was forgotten as I took in the watery wonderland. Except for clearing my mask of unwanted seawater from time to time, it was an uninterrupted experience where tremor and stiffness seemed to disappear. It was if during those 55 minutes I had been transported to a disease-free heaven filled with beauty and potential for discovery around every coral corner, totally unencumbered by any serious physical limitations.

Of course, as in life, the reminders of my earthly challenges are never far away. The reality of my Parkinson's disease was brought home with a vengeance as I reluctantly drew myself out of the water and crawled aboard the dive boat. The late afternoon sun had hidden behind clouds hugging the western skyline, and the wind that whipped through the open boat came in cold gusts that cut through my warm water dive suit. The uncontrollable shivering due to the cold accentuated the uncontrollable shaking that I normally displayed. I felt conspicuous but was helpless at explaining my dilemma. It seemed too awkward to even attempt.

Upon reflecting later that evening I replayed the effortless and symptomless submarine experience and smiled with satisfaction. I was reminded yet again that Parkinson's couldn’t rob us of everything. We can find places of freedom, like on motorcycle missions, jumping out of planes or slipping into the sea. The open water frees even the sea turtle from its tortured struggles to glide easily among more elegant members of marine society.

Parkinson's in Paradise - Caught a Cold in the Caribbean

It is relatively easy to feel sorry for yourself when you catch a cold on the first day of a Caribbean cruise.

It all started several weeks before we were to leave on our short but much-anticipated vacation aboard the Emerald Princess out of Fort Lauderdale. As is often the case, it took a week or more of working 14 to 16 hour days to get ready to take one week off, therefore I arrived at the hotel in Florida the night before our ship’s embarkation, feeling rundown and exhausted. More importantly, or so I thought, I was minus my suitcase, which held all of my clothes and, stupidly, my Parkinson's medication. The bag and its needed contents had apparently gone AWOL at the Dallas-Fort Worth airport, aided and abetted by some practical-joking baggage handler. Apparently he or she thought it would be hilarious as he imagined me, dressed in my latest Lululemon clothes with my right side shaking with the necessary velocity to gain flight, trying to convince the maître d' that I should be permitted entry with my wife and friends into the Botticelli dining room on formal night. The American Airlines missing baggage department assured me they would launch a full-scale search and recovery mission in order to track down my truant luggage, ensuring that it would be captured, taken into custody and transported under guard on the next flight to Fort Lauderdale, arriving at the hotel late that evening. Long after midnight I gave up waiting and fell asleep with images of looking seriously out of sync with my well-dressed wife.

I did not feel 100% when I woke up the next morning, but chalked that up to a less than restful sleep and the stress of finding out that my bag had still not arrived. As the morning ebbed away, my frustration began shifting to optimism as the lost baggage police had indicated my overstuffed suitcase had indeed been taken prisoner and was supposed to be delivered to the hotel. I insisted that I needed it by no later than 11 a.m., as that was the time our ride to the pier was to pick us up. Caught between angry, anxious and still exhausted, I sat in the hotel lobby to wait, and promptly fell asleep. Unbeknownst to me, American Airlines had taken my insistence on meeting the 11 a.m. deadline seriously, and missing that deadline they had the bag impounded in a warehouse with millions of other mislaid suitcases. My wife woke me about 12:15 p.m. to tell me that after speaking to an American Airlines supervisor explaining in no uncertain terms that things were getting critical she had discovered that the warehouse was a scant 8 blocks from the hotel, and had arranged a taxi to drive us there to pick up the bag and transport us to the ship’s gangplank. By the time we arrived at the pier I had a bad headache and a good case of the shakes, but at least we were finally boarding to begin our tropical time away.

My next 3 days were spent largely in our cabin (thank goodness for a balcony), only venturing out with a large stash of tissues to staunch the tide that would erupt from my increasingly runny nose. Fellow voyagers scowled at me as I attempted to avoid spraying them with my sneezes. Even crewmembers invariably sought out one of the innumerable hand sanitizer machines every time I went by them stifling my hacking cough and sniffing incessantly. The alliteration was not lost on me: catching a cold on a cruise in the Caribbean!

But despite the lack of cold medicine on board the otherwise well-stocked cruise ship, and notwithstanding my antisocial behavior as I disappeared for a nap every couple hours, I began to appreciate that things could be worse. I could be at work attempting to function in Stoic fashion, pressed by demands I felt ill-equipped to meet. Instead, I had a whole week to recover in the sun, enjoying 80 plus temperatures and unparalleled scenery, sharing excellent food and entertainment with good friends. I could sleep whenever I felt like it, which was often, and likely return home at the end of the week modestly refreshed and rested. Having a cold in the Caribbean was not so bad.

This led me to think about living with Parkinson's disease in less developed countries where good medical care is either unavailable or unaffordable. Living in Canada, I am blessed by having, in effect, Parkinson's in paradise. The standard of living and medical health system enables me to have the best of care, economic access to a variety of medications and the expectation that I will live as long as most.

It is easy to feel sorry for ourselves. But there are many who have little medical or other support in their fight against the fear and uncertain future that follows a diagnosis of PD, if such a diagnosis is available. Comparatively, we are fighting Parkinson’s in paradise.

Don’t Touch?

Just like when I was an overly inquisitive boy, I seem to be constantly warned, “Don’t touch!”. But don’t we need touch?

Other than for medical reasons, touch is often sparingly rationed out to those of us who are getting older, or dealing with a disease like Parkinson’s. Despite the resulting sense of isolation, in effect a symbol of stigmatization like the ‘untouchable’ leper, people just seem to shy away from the taboo of touching. It seems to be relegated to the ranks of the manipulative, illicit and uncomfortable. But in the past few days I have been offered more than a few examples of how touch is legitimized and made luxurious.

It was only 7:30 in the morning but I had an hour before the flight left. All I needed was 20 minutes she said. It was one of those airport “chair” massages. You know, the kind where you sit in a kneeling position, face pressed into a cushioned donut. You remain leaning forward in a praying pose while someone kneads your stiffened muscles like my Grandma used to pummel the bread dough before she pushed it into the wood burning oven. Kim had worked a number of jobs before entering the highly personal world of massage. When I asked what caused her to choose her work, I was surprised when she off-handedly remarked, “I needed touch in my life”. Although curious, I did not pursue the topic further (I had a plane to catch), but there seemed to be a great deal more to the story. Twenty minutes was not long enough.

I don’t know about you, but the scalp massage part of a haircut is by far the most enjoyable part of what is otherwise a purely functional, bimonthly mandated activity. Angelika was responsible for the much-needed, but expensive, haircut I had while sailing out of Fort Lauderdale’s harbor into a Caribbean sunset sky. She was from South Africa. She was working in the spa aboard the Princess Emerald to see the world, as were most of the young people working the cruise ship. Strong, masterful hands with adept, outstretched fingers worked aromatic shampoo into my lathered hair. I wanted it to continue indefinitely, like a kitten with eyes half closed being stroked in front of a fire. I realized that the whole job of a beautician is touch. It was lavish, and twenty minutes was not long enough.

In the face of acceptable touching, such as greeting the family and friends we are cruising with, at a purely functional level it has become a very awkward aspect of our culture. Take the apologetic young man at Vancouver airport security who explained to me while he snapped on a clean pair of blue latex gloves that it was just procedure to “pat down” every so many passengers. I suppose that sounds, as it felt, far less invasive than “frisk”. What was I going to think, that he was doing this for some personal gratification? Not likely.

We are so often informed by words, signs or just by example that touching is bad. For instance, even though the H1N1 flu and other plagues of our disease-paranoid age are primarily airborne, we are faced with liquid hand sanitizer at every doorway, gangplank and washroom we encounter on the ship. I even noticed that some folks take a paper towel when gingerly grasping the washroom door handle as if escaping a crime scene seeking to leave no telltale fingerprints.

Touch, it seems to me, becomes more not less important as we age. And for those of us who face the sometimes self-marginalizing affects of Parkinson’s or other visibly distinctive diseases, touch brings us back from isolation and loneliness. Be it a pat on the arm or shoulder, an extra-long, firm handshake, or a warm embrace that says, “I value you”, let’s commit to keeping in touch as a part of who we are. Let’s not delegate this important sensory ability to the professionals.

Winston, War and Parkinson's

Exhausted from too many late nights at work, and having grabbed an insufficient four hours sleep before we dashed off to make the early morning flight from Vancouver to Miami, I slumped into window seat 13F, expecting to be asleep before we left the ground.  We had snagged the emergency exit aisle with the extra legroom and "reclining" seats, ensuring some ability to snooze.  As we were settling in I noticed that the movie to be played was "Into the Storm".  I had never heard of the 2009 Emmy-winning TV miniseries.  But something held my sagging eyelids open as I saw the rotund, cigar-chomping images of Winston Churchill.  I became totally engrossed as soon as I had my headphones plugged in and began hearing the fighting words of that savior of England. Those words inspired me as I began to see the analogy of Parkinson's as a war to be waged against an ever-fiercer force.

Churchill was a grand, if somewhat pompous, figure who strode confidently into the right place at the right time.  But at the time, few who knew the man considered him much more than a populist orator, an opportunist from a privileged background who succeeded to the office of British Prime Minister in the wake of Neville Chamberlain's retreat. Yet, despite his significant human failings (he smoked, drank and ate too much), he evidenced such courage, or brash arrogance, that he convinced or cajoled his nation and its leaders to not surrender to Hitler's Nazi bullies, but fight on despite formidable, even insurmountable, odds.  His determination and single-mindedness were legendary and critical to ultimate victory.  But, curiously, he was not a man for easy times, as his 1945 electoral defeat, after winning the war, convincingly evidenced.  He was born to fight.  The war made Churchill, as much as he made war.  It called out his greatness, his best.

I am inspired by Churchill's commitment to fight the enemy, regardless of his self-doubt and how futile war must have seemed.  I concluded at the end of that movie that he would be an inner voice for me, barking out encouragement or demanding improvement in the battle against PD.  Consider what he said and apply these statements to your enemy:

"Never give in - never, never, never, never...never give in... Never yield to force; never yield to the apparently overwhelming might of the enemy."

"Success is not final, failure is not fatal: it is the courage to continue that counts."

"Courage is the first of human qualities because it is the quality which guarantees all others."

"Sure I am of this, that you have only to endure to conquer."

"It is a mistake to look too far ahead. Only one link of the chain of destiny can be handled at a time."

"We shall draw from the heart of suffering itself the means of inspiration and survival."

Now ours is not a 5-year war with Parkinson's disease. Nor do we live in an age when fighting is portrayed positively.  We, of our generation, have grown up believing that all problems of conflict can be solved without sacrifice or saviors, hurt or harm. Such thinking in 1940 almost snuffed out the candle of democracy. But whatever our political persuasions, when it comes to PD we cannot negotiate.  Appeasement is not a strategic option.  We must battle its ravages until it is defeated. No wonder we feel fatigued from time to time, for it is a fierce fight.

We can be inspired by others who go to war against this daunting foe.  Like Michael J. Fox, fellow Canadian and crusader for a cure and the cash to pursue it, or Muhammad Ali, who, once as dauntless and ego-expressive as Churchill, does not hide in shame, or the hundreds who seek a better world for themselves and those who wake each day to face the enemy.  But even Churchill did not stand alone.  He has his Clementine, who soldiered on with equal bravery.  So too are there those today who prop up those trembling and stiffened hands, such as Fox's Tracy Pollan, and Ali's Yolanda.  I am reminded of my own bride of 35 years and the Churchill quote that certainly resonates for me.  Winston said, "My most brilliant achievement was my ability to be able to persuade my wife to marry me."

In times of war we need heroes.  Parkinson's is no exception.  We need inspiration and encouragement.  Maybe you know such a person who will help you to never give in.  Maybe you can be a soldier rather than a caualty.  It will take relentless, steely-eyed commitment.  But as Churchill said. "In war: resolution".

Remembrance - War of Attrition

November 11. Remembrance Day, Armistice Day, Veterans Day, Poppy Day, and Anzac Day are all different ways of expressing the same thing: the need to remember. It is something I am rather poor at, as I typically and easily invest my energy in the present.

But today I choose to remember:

1. Those who fought against tyranny and evil;

2. Those who put their lives on the line today to give us safety and security; and

3. The elderly, especially those with Parkinson's, who are so easily forgotten.

Remembrance Day is 90 years old this year, having been formally created by King George V in 1919 as a commemoration of those who lost their lives in World War I. And today there is only one living Canadian veteran of that war (a total of 5 worldwide). John "Jack" Babcock is 109 years old. Soon his ability to retell his experience in that horrible world conflict will be gone. Will we remember it then? Few remember even the Second World War, except through secondhand, often faulty, impressions left by movies and television.

Due largely to the complexity and speed of life, the frenetic demands of the present and the need to anticipate and plan for the uncertain future easily override the past and eliminate time to remember. The Internet and television show us the minute-by-minute battles fought by young people in foreign lands today. These are the images that permeate our contemporary thinking.

It is ironic that ‘remembering’ seems to be a pastime of older folks. But who remembers them? The elders of our society (whether soldiers or civilians) are rarely recognized or celebrated. They are most typically relegated, both literally and figuratively, to dusty, misunderstood and often quite forgotten places. They are sometimes left with little more than reminiscences of days gone by. The pain and pleasure of long ago fill the minds of even those who are unable to adequately engage the present, or fathom any future. It is the young and glamorous who rule our world.

This is also seems true in the world of Parkinson's, where the media profile the plight of the young, the famous or the extraordinary. But the shaky and stiff seniors of our society often suffer silently, forgotten. As with veterans from the various wars, those older folks with PD live and then pass with little notice, as if they had nothing further to contribute. It is my job, our job, to remember, value and venerate these history makers among us, wherever they fought or still fight their battles. In many ways, like the soldiers of yesterday, they gave us what we have today.

“Lest We Forget”, words that have taken on a specific meaning in relation to Remembrance Day, could appropriately be tied back to Rudyard Kipling’s 1897 poem, "Recessional", from whence they came. That poem is not about war, but about society forgetting its roots and values, its need for humility, and remembering those upon whose shoulders we stand. Let us not forget. Let’s take time to remember and honor those who clear the path ahead of us, be they soldiers or seniors.