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.