Sunday, May 30, 2010

Tripod Charlie

Round eyes stared. Charlie half sat, half crouched, back against the wall, obviously ready to scramble to any exit that may become necessary and available. He absorbed the total scene critically, drawing it in as if with the power of twin tractor beams. Clearly, he was suspicious. No swish of the tail. No purring. Not even a twitch of his Hitler-like mustache. Only watching. Waiting, it seemed, for some threatening move.

He had every reason to be cautious, concerned and guarded. There were eight people in this particular room of the house. The fact that two of them were familiar did not outweigh the risk presented by an invasion of six strangers. As might be expected, it was the men he scrutinized most carefully. Although they seemed to laugh loudly and virtually ignore his presence, they worried him. Sometimes these older males seemed to struggle with jerky, stiff and uneven movements. While they did not signal danger, there was no sign of safety either.

But there was another reason Charlie was skeptical. While not obvious as he hunkered against the wall, as soon as he moved his limp betrayed his vulnerability. It was his left front leg. It was not hurting him, unless with phantom pain, for the leg itself was gone. The amputation had left a barely noticeable stub. But it was reminder enough of his once smooth, stealthy movements. Now he was rendered somewhat clumsy and in need of protection. No longer was he remarkably capable at hunting, climbing vertical surfaces and scrambling to a hasty retreat to escape any predator’s jaws. These abilities had been stolen from him by two angry and vicious young men who had thrown him against a wall, crushing bones and mangling muscles. The loss of a normal life was the result.

But perhaps in some ways the men in the room could understand Tripod Charlie. For their lives had also been changed forever by a devastating and vicious enemy; Parkinson's. But the reason that Paul the Shark, Big Gerry, John and I had gathered together with our spouses Saturday night betrayed the differences between Charlie and us.

Our informal group met to share laughter to dispel tomorrow's uncertainties, tell stories, most of which had little relevance to our common experience with PD, and communicate that regardless of how independent each of us might appear we were there for one another whenever the need arose. It is a type of brotherhood, forged in the solitude of walking what might otherwise be a lonely path. We are unique, but understood. At least to a point.

By the end of the evening the wine and laughter had warmed the room. Comfortable familiarity had begun to permit us to relax and know that it was safe enough to draw closer. Even Tripod Charlie allowed us to get closer, to comfort him as if he knew somehow that we shared the common experience of redefining what is normal.

Saturday, May 29, 2010

The Apostophe in Parkinson's Disease

Punctuation marks are important symbols. Although often ignored, they mean something. As opposed to words, punctuation marks must obey the rules. As such, an apostrophe is used in English to indicate possession.

I have come to resent the apostrophe in Parkinson's disease. When I was diagnosed, more than four years ago, it was only a minor irritation. But as I began to lose my manual dexterity, now being limited to left-handed typing, the apostrophe's placement at the extreme right side of the keyboard makes it a major annoyance. It is much easier to type the URL of this blog without punctuation. The more I think about it, the more difficulty I have with the significance of the apostrophe in Parkinson’s. In my view, it is misleading punctuation.

Mr. James Parkinson (not a doctor but an apothecary, a pharmacist) first detailed his observations of six people sharing some symptoms of the disease in 1817, but did not discover it. His claim to PD fame is tenuous at best. It feels awkward to explain to people that I have someone’s nondescript named disease.  Unlike Lou Gehrig’s disease (where the apostrophe use is accurate) Parkinson did not have the disease. He did not even extensively study it. He simply noticed six folks with certain physical manifestations in common and wrote an essay about it. He actually named what I and millions of others around the world have, Shaking Palsy. In truth, it is not his disease.

We expect diseases to be given names. Sometimes they are named after people. But one would assume it would be the discoverers that are memorialized. But rarely does such a tenuous association, simple written observations, result in the honorific. It was Jean-Martin Charcot, known as the founder of neurology, who gave Jim Parkinson the recognition of his own eponym. Why? I do not know, but from my perspective he does not deserve it.

Unfortunately, PD belongs to those of us who bear the weight of this degenerative neurological illness. There is no distance between the disease and each of us.  It’s Bob's disease.  Bryn’s disease. Marian’s disease. Tom’s disease. Jon's disease. Vicky’s disease. Eric’s disease. All of them have the disease. The all-important apostrophe belongs to us. Is it not better that we own this disease rather than it having someone else’s name? Maybe we need to take back the disease. Maybe we should keep the acronym PD and rename it the more descriptive "Palsy disease".  I don't really expect any change, so I will continue to resent the apostrophe that indicates Parkinson owns our disease.

Sunday, May 23, 2010

"I Do" - A Daily Commitment

The evening sun had wrestled its way through the black-bottomed clouds just in time to take some of the chill off the small crowd of friends and family. We had gathered at sunset in our finery to witness the exchange of vows and a new beginning. The threat of the uncharacteristically cold May afternoon's rain had passed, at least for a time, as if to give a blessing and lend expectation to the young couple starting their lives together. The scene betrayed other hints of hope. A 3-month old chubby-cheeked girl squirmed in her mother's arms, sporadically announcing the pain of her first tooth, poking its way through throbbing gums. This firstborn child, grandchild and great-grandchild challenged the starry-eyed wedding couple for top billing, and came a close second.

As we listened to the preacher’s cheery and challenging words spoken to the anxious couple, and to us, we all sensed the approaching climax of the ceremony. Despite the anticipated rousing applause, it was not the passionate kiss that would seal the pact. It was the echoed covenantal words, "I do". Though repeated in measured tones, the fervour and sincerity belied the simplicity of the two one-syllable words, easily trumping any words the couple had ever used before. Taken at face value, and despite any worldly cynicism that might argue otherwise, this was a meaningful moment. No one gathers to hear a couple say to each other, "I might", or "Subject to...I will". Marriage, regardless of declining popularity, not-so-hidden reservations, sad statistics or the skeptics touting modern alternatives, is still an unconditional commitment, a vow. What else could it be? No one celebrates a contract of convenience.

We watched this life-changing mutual pledge with our own hopes caught up in the words. We were not merely observers, but participants in this drama. Staged so beautifully, each tiny detail evidencing love, it was more than a heart-touching performance, a one act passion play with designated speaking parts and supporting cast. It was, at its best, a solemn, even holy, swearing of an oath that would alter lives dramatically, and of more than just two 24 year olds. It was an instance of rare beauty, merging the solemnity and joy of the moment, juxtaposing the delicate radiance of the bride with the strength of the smitten groom, mixing nervous laughter with sincere tears.

While symbolically represented, the groom wearing his father’s wedding ring and signing the legal documents with his father's cherished fountain pen, I am sure the congregation all felt his presence. Hugh, my friend, the father of the groom, would have loved nothing more than to have been there giving speeches, embracing each celebrant, toasting us all with a salutary “Chimo!”, and tenderly holding that tiny grandchild and shedding tears of gratitude for it all. His temporal ending one year ago also ended the collection of memories that he created and we carry like a well-worn photo album. But his influence among the stretching shadows was tangible. He was silhouetted in the strong characters of those who stood to share their words and love, those whom he encouraged to carry on, to make new memories and share new beginnings. We all are craftsmen and women who must build the future on the foundation of faithfulness others have framed.

As I stood, shaking and stiffening as the cool evening air came in off the grey ocean, reminding me of my own relentless combatant, Parkinson’s, I realized how much I need to be reminded of those words, “I do”. Just two simple words that are worthy of being restated each day. Words of continuous commitment to our spouses, to our children and grandchildren, to our family and friends, whether rich or poor, sick or healthy, easy or tough. Two words that affirm our vow to keep the promises made and fight the daily battles despite the loss of fellow warriors. For we are the fragile bridge between yesterday and tomorrow. We are guardians of a sacred oath, a legacy to love, “As high as the heavens and deep as the ocean”.

Sunday, May 16, 2010

Unplanned Events on the Journey

Just as the sun was giving up on the day, we were getting started on our evening's plans as we drove west into its slanting rays. I peeked around the visor only to be confronted by its bloodshot eye staring straight at me as if to make one last point before its departure. But suddenly the stare down I was losing was interrupted by the rapid approach of two brake lights that were threatening to become part of my vehicle's grill. As quick as my Parkinson's would allow I firmly braked. Fortunately, the only substantial effect the disease has had on my driving is making it difficult to keep my darn foot still on the gas pedal. Thankfully, I stopped. However, I had an excellent view of those taillights. Everyone stopped, except the sun, which continued its unhindered and unheeding slow skid toward the distant horizon.

I had chosen the alternate route to avoid the significant traffic backup on the main freeway headed into Vancouver, Highway #1, which was notorious for its congregation of traffic headed to town, as we were, for a pleasant mid-May evening out. I thought the "back way" I had taken was supposed to be relatively clear sailing. That is, until shortly after the rather abrupt stop when we learned from the radio traffic report that an accident had occurred a few miles ahead of where we were lined up. We waited for our turn to get by. Now we were certain to be late.

I had allowed 90 minutes to make it into town, but having left work behind schedule (it was for a good reason, honest!), I had reduced our available travel time by 30 minutes. So instead of taking a leisurely drive into the big city, I was pushing hard on the gas, and then brake pedal, racing from one stoplight to the next. I may have been gaining on other dinner-bound traffic, but this was only by intentionally disregarding speed limits. Oh, and being rather nonchalant about the "concerns" of my attractive passenger. She did not need have said much, as I could tell by the firm grip of her left hand on the dash and the white knuckles of her right hand on the door armrest. She became a living demonstration of why seatbelts are required in vehicles; more to protect against driver of the car you are in than the drivers of other cars.

I wanted to hit the steering wheel and shout at the lineup of cars ahead of me, "I am in a hurry! I do not have time for this." My mind raced to find ways around the virtual parking lot as it dawdled past the accident scene some miles ahead. Nothing. No way to get off the road and around the unplanned disruption. I was angry and anxious at the same time. It was ruining my plan. I was not prepared for this. I should have left earlier! I should have taken Highway #1! I should have been listening to the radio traffic reports ahead of time! I should have anticipated something like this. Why was this happening to me? Why now?

Some 10 minutes later the answer came to me as we crawled past the white Japanese-made sports car that had taken out a rather stable, double posted, highway sign, with both car and sign showing evidence that the fight had not been worthwhile for either of them. I should consider myself fortunate that it was not my vehicle strewn across the highway in pieces. I was inconvenienced. I experienced delay of my plans. My expectations were not being met. But I was not that fellow being carried away in an ambulance.

It struck me then that the traffic jam was much like Parkinson's disease. Unplanned events are bound to occur in life's journey. No one can accurately predict or preempt every potential disruption. Life just does not allow enough margin. Parkinson's slows us down. It is a wake up call, a warning to "drive more carefully", failing which we may end up incapable of going on at all. Sure, PD makes me want to scream sometimes. It makes me angry and anxious all at the same time. It is certainly not what I had planned. But it is teaching me many things. Perhaps for some days yet I will watch the sun plod along its well-worn path, thumbing its nose at my plights and perils. But I will learn patience in response. I will learn there is purpose in all this.

Thursday, May 13, 2010

Living with Parkinson's in the Wonder of Twilight

It was an odd and now outdated twilight pastime. It took place on a warm summer weekend night in my small town. Despite the fact that the day’s labour and heat was still causing beads of sweat to form on my father’s brow, there was a sense of anticipation as we rushed to get ready. My siblings and I did not complain when we had to take our baths early and bundled into the car with blankets and pillows. And we were required to wear our pajamas before it was even dark. This was not punishment. In fact, driving into town we were proud of the fact that we were wearing our flannel PJs rather than the seersucker summer ones. We bounced with unbridled excitement as we hung onto the velveteen rope that dangled from the back of the front seat, waving at anyone we might know. No seat belts to restrain us back then. We were on our way to the Skyway Drive-In Theatre. The year was 1959. I was 7 years old and the Drive-In was 9.

When we arrived we paid the young girl in the small shack a few dollars, one price to admit a carload, and drove to one of the gravel humps close to the painted iron posts from which hung the aluminum speakers on short wire cords. That is unless someone had left in a hurry with a speaker firmly fixed in their rolled up window, leaving a useless wire dangling. Dad maneuvered back and forth as he tried to park so that he was close enough to the post to still get out of his door and the viewing angle through the front window was right. But inevitably the alignment required us kids in the back to crane our necks to see past the rearview mirror and our parents’ heads (at least there were no headrests in the way). We did not complain. This was a special treat for my family.
As soon as my Dad was satisfied with his place on the knoll we dashed to the only grassy portion on the lot, the area right under the screen, where there was always a passel of kids our age to play with while we waited for the darkness to set in. We stayed there, unsupervised, until our father came and got us as the first movie, always one for us kids, started. But we would return to play after the first show. That is unless we were sneaking in front of the projector room making animal shadows in the beam of light that was splashing images of animated snack food doing tricks in a circus. The intermissions were always too short when we were kids because when the second show started it was time for us to curl up and go to sleep. We rarely did, although we faked it well.
Of course there were others at the drive-in that thought the intermissions were too long. When the lights went on there seemed to be a number of cars where the occupants had been sleeping, and popped their heads up as if startled. It was always two teenagers, a boy and a girl, who ended up wiping the condensation from the windows before they struggled outside, somewhat disheveled, to line up for the snack bar or washrooms. Why would two people spend their money to go see a movie only to sleep through it I thought? It was a few years before I unraveled that mystery.
We rarely got snacks ourselves, unless we brought them from home or my mother treated us with one bag of popcorn and drink to share. In the scrum that followed the popcorn ended up on the floor and in various nooks and crannies of our pajamas, and the pop was assigned a safe refuge in the front seat. There were no cup holders.
The Skyway closed in 1985. Some years later a client of mine successfully converted it to housing. I understood the merits of this with my adult brain, but there was still something in me that felt deprived of an icon of my childhood. There remain only 3 drive-in theatres in British Columbia. Today, few know they exist and wonder why they do, given many have huge screens in the security of their media rooms. But there is something missing in our cloistered movie experiences. Besides steamy windows.
Most people with Parkinson’s are in the twilight of their lives, where day meets night and they watch more than participate in the daily action. Pajamas are put on early and falling asleep before the movie is over becomes a common event. But, like the drive-in theatres of my childhood, there can be magic in the twilight. Watching the adventures of others. Remaining childlike enough to enjoy making animal shadows. Having a popcorn fight (butterless of course). Being together as a family. Making memories to last a grandchild’s lifetime. Delighting in the darkness, without which the stars would not be visible. And I suppose if you are lucky you might find a drive-in theatre and fog up the windows a little.
Twilight, even with Parkinson’s, need not be empty. There is wonder and enchantment if we but search for it.

Saturday, May 1, 2010

Talk About Listening

Shaking more than I had in months, I joined the processional of professors being led to the small stage facing a newly minted class of university graduates. I enjoy public speaking and feel comfortable in front of audiences, but any casual observer would have guessed I was petrified. My right hand, arm and leg were uncontrollable. Obviously, I thought. We took our seats facing the expectant audience. No table to hide behind with an hour of squirming and twitching ahead. I could not use my standard tricks of putting my hand in my pocket or clutching my belt behind my back. Sitting on my right hand served little purpose except to look awkward as I tilted to the left, leaning into the shoulder of the distinguished gentleman next to me. I hoped that it was just an abnormal delay in the meds kicking in. “Relax, relax,” I repeatedly rebuked my arm and hand, but to no avail. The event wore on and the time for my short contribution to the ceremony came nearer. Then the nerve-jangling vibration started.

Of course, I was the only one who noticed the whirr. It was my Blackberry notifying me that, because of how I set the phone profile, after the end of the second vibration my phone would ring. Loudly. I had forgotten to silence my ever-present electronic “tether”.

Quadrupling my anxiety, it was like hitting the nitro button on my tremour. And I had a split second before a ringing phone would send snickering through the crowd, and serious embarrassment would give my face a deep crimson hue. But, thankfully, my reaction was faster than I expected. After minimal fumbling I drew the phone from its holster as nonchalantly as possible and hit the “ignore” button. Saved! Although my move might have confirmed my addiction to the smart phone on my belt, I was at that moment introduced and called to the podium.
With my speaking notes loaded on my Blackberry it likely appeared that I was simply getting my technologically recorded remarks ready instead of digging for a paper script. Between clutching the dais and pushing my right hand firmly in my pocket the short speech came off well. It went something like this.

I started by asking the question, “What is a skill you have practiced for many hours, over years, and will definitely need to succeed, but in all likelihood have not learned to do very well?” The answer: “Listening.” Not just hearing, or even listening so that you can regurgitate the words on paper or in a presentation, but wise listening. It is what my wife refers to when I am quick to counter her words with some lawyer-like cross-examination comeback (Don’t try that at home!). “Please listen to understand, not just to respond,” she says. Listen from the heart as well as the head. It is a skill that is rapidly disappearing and yet radically needed today. As Shakespeare said in Hamlet, “Give every man thy ear but few thy voice.” Or as Jesus warned in the book of Luke in the Bible, “Consider carefully how you listen.”
When it comes to Parkinson’s we need to listen; to our bodies, our emotions and the advice of wise friends and professionals. And we need to be listened to, allowed to remain a part of the dialogue of the disease despite not being doctors. Nothing communicates respect and caring more than the gift of listening. Maybe we all need to turn our “communication” devices off sometime and just listen.