Volcanoes and Parkinson’s

Like the devastation wreaked by Mount Etna’s fury, Europe, and especially its airline industry, is suffering the wrath of yet another volcanic temper. And Renae and I are being affected by its aftermath as well. This is not my first experience with an erupting volcano. I remember driving down Interstate 5 from Vancouver, Canada, to Portland, Oregon, in May of 1980 watching plumes of smoke and ash spew from Mount St. Helens, only a few miles away. But we easily endured the minor consequences; gray, flour-like dust covering the car, and debris plugging rivers causing highway flooding and diversions. But my latest volcanic experience, while physically much farther away, has been far less forgiving.

We were supposed to be seeing the Rocky Mountains outside the British Airways 747 window right about now. Instead, we are stuck in Europe, albeit in a beautiful part of France where we remain overstaying guests of good friends. We are likely to remain grounded and somewhat helpless for at least 5 days. The prognosis is uncertain. Any response to the situation simply deals with the symptoms of the eruption, not the cause.

Few have ever heard of Eyjafjallajokull, and fewer still can pronounce it. But the Icelandic volcano has erupted into the public awareness by spewing its ash and atmospheric consequences into the air, and in the process made aeronautic history. The resulting costs are enormous, yet the events of the last few days were predictable, as seismic activity began months ago. We just did not take them seriously, as we were generally unaware of what it all meant. Of course the threat that this sleeping dragon would awake and breathe fire and molten destruction has been there for many years, hinting of its power at times . But we in our media managed world rarely notice the subtle, the simmering, and the slow moving. We prefer, and are happily fed, the brash, brazen and bold headline stories that are the stuff of show biz sound bites and political photo ops.

This all led me to see volcanoes as a metaphor for Parkinson’s disease. It remains hidden for a long time, with people often ignoring its presenting symptoms. Even minor symptomatic eruptions don’t necessarily attract the attention of those living closest to this menace. Its presence is growing, disruptive and expensive, both personally and societally, but apart from a few who can generate Hollywood hoopla, it is a disease that few know or care much about. When it happens, we need a plan. For those of us caught in its destructive power it can be a anxiety-producing, lonely and life-changing experience.

April is Parkinson’s Awareness Month. Maybe the PD tulip should be shown growing on the slope of a volcano.

Siege Mentality

Some hilltop towns and villages of Provence, such as Baux, which we visited today, Goult, where we are staying, and Gordes, a town we visited Tuesday that figured prominently in the Russell Crowe movie, "A Good Year", have remained marvels of painstaking engineering effort and protective retreat since the 12th century. They provided an early warning system with their extraordinary views of approaching enemies, giving time to prepare for battle. They were built as unbreachable fortresses to which those who feared attack retreated. Within their walls was found safety and security, the ability to remain self-sustaining to a large extent in order to withstand lengthy sieges. Inevitably, sieges fell out of favour as domination of the countryside left the surrounded military compounds somewhat powerless and cut off from necessary supplies. Why climb a mountain to fight the foe when you could remain out of range of arrows and other medieval tools of war, safe in the valley eating their food and making off with the livestock. Warfare became more mobile and static targets subject to devastating and sustained “long distance” attack by cannon. Many of the precariously perched walled castles fell into disuse and disrepair, as there were limited reasons to live on the top of a windy crag.

The fortress villages provide a metaphor for the way I am tempted at times to respond to my Parkinson's disease. While a view is now more related to property value than personal preparation against attack, I sometimes feel the necessity to look into the distance for ways to respond to the enemy's assault. I have learned about the weapons of the PD war, such as the endless tremours and stiffness that plague days and nights and pour like sheets of arrows over the walls of my best defences. Then there are the unexpected events, like sporadic insomnia, anxiety or depression, like catapulted missiles raining into life from time to time. The siege of PD has begun and I sense what it must have felt like to hold up in a castle under attack. We cower out of fear of what the future may hold unless help arrives from those who would find a way to defeat our opponent. Life is becoming slowly more difficult each day as the situation worsens with no end in sight. Those with Parkinson’s can easily feel trapped within the walls of this disease, increasingly helpless to fight back. We can easily feel caught in a siege mentality, "an attitude or state of mind in which one feels surrounded or under attack by enemies, opposition, etc".

While there is a time to retreat to places of distance perception, safety and security, this is no place for people with PD to remain. Our rival will ultimately defeat us there. We must take the fight to the enemy. Be proactive. To me this means doing what I can and want to do while I can; the “bucket list”, pursuing dreams, taking risks, undertaking adventure. To others it is raising awareness of PD and engaging support for its cure and the alleviation of its effects. Still others fight back by focusing on less fortunate and their needs, encouraging others, and maintaining as positive an attitude as possible.

We can survive a battle by effective defence, but to win a war we must attack the enemy.

Lessons Learned From Lunch in Provence

Lunch is too abrupt a word for the two midday meals we have experienced since arriving in Provence. "Dejeuner", the French equivalent, seems more appropriate in length and refinement.

Sunday around 1 PM found us in the town of L’Isle Sur La Sorge (literally, “the island on the Sorge” river) in the Luberon Valley of Provence. We are guests of our longtime Vancouver friends, the Taylors, who are temporarily residing in Goult, a nearby small hilltop village. The narrow streets were jammed with a potpourri of carts and makeshift stalls selling everything from antiques to lavender, cheese to clothing and crafts. The shoppers among us, read females, and those skulking after them with no particular purpose than to carry brightly coloured bags bursting with bargains, read males, were hungry from the morning’s pursuits. The long lost warmth of spring had brought out the townsfolk and tourists, and thus the diners, in droves, all of whom seemed to want the sun-drenched sidewalk tables by the river. After choosing our favourite restaurant, Le Bellevue, and waiting a short while, we were shown our table. Voila, it was perfect. Right on the river, ducks making amorous advances in the fast moving water adjacent to our table, we also had a view of the crowds surging past in both directions as if engaged in some synchronized dance. Three hours skipped by before we left our seats, and the itinerant merchants were packing their wares into vans that carefully navigated through impossibly narrow lanes. It was a glorious time of fully relaxed friendship. No agenda. Simply enjoyment.

Monday at 12:30 PM found us on the doorstep of La Bastide, with a history preceding the discovery of Vancouver. Although once a bed and breakfast, it is now the home of Meta and Gerald, new friends of the Taylors. We four had been invited to share a meal together with a neighbour couple. The 8 of us sat down together, some of us virtual strangers, and rose from our places at the table 5 hours later as friends. Yes, the meal was very good, but it was the laughter and stories, discovery of common interests and tastes, the easy camaraderie that made this repast a remarkably memorable time.

Eating in France is a passionate confluence of the senses unrelated to North American dining. Laced with laughter, fueled in part I am sure by liberal application of excellent yet inexpensive wines, it is more a tribute to friendships formed than an indulgence in decadence. Whether simple or elegant the food and drink are not really the focus of attention so much as a means of transportation to a table around which relationships flourish. A meal, no matter how delectable, is simple sustenance when eaten alone. As the Arab proverb goes, “He who eats alone chokes alone.” The speed with which we normally eat betrays the pace of our lives. Often lacking in depth, our relationships are becoming more like fast food as we exchange velocity for the virtue of savouring time well spent together.

Perhaps the necessity of slowing down as a result of Parkinson’s is teaching me, somewhat belatedly, a valuable lesson: real living and relating is less like lunch and more like le dejeuner.

"Sadder than destitution, sadder than a beggar is the man who eats alone…”

Jean Baudrillard, French philosopher

April in Paris with Parkinson's

Normality disappears when you travel. The last 14 days remind me of being diagnosed with Parkinson's disease. Everything changes. Denial of the new reality is possible for a short time but is ultimately overwhelmed. There is no normal (at least not for very long).

Weather also becomes a major factor in determining the events of each day, whereas in a normal day at home, weather it is little more than a sidebar to the established routines. For the first 10 days of our European adventure, the weather had been a significant deterrent to most, if not all, venturing into the unknown territory of each country and locale we visited. This limited outdoor activity was further deterred by our sneezing and wheezing, all of which made for a less busy time and, perhaps, less enjoyable sightseeing than might otherwise have been experienced. Our time with family and friends, together with the odd experience or daytrip explained in other postings, became our saving grace. It proved to be providential that we did not come to Europe for the sightseeing!

Leaving Antwerp's beautiful train station, the weather finally broke when we entered Paris and found a cab outside the Gare du Nord. The sunnier skies were welcome, as these were the only days that we were without relational support from friends and family.  Further, we were obliged to make it on our own with me translating a language where my competence is questionable. Having taken no French since grade 12, you can imagine how rusty it has become when only used, like my old dusty high school dictionary, every few years when I had the occasion to visit Québec or France.

However, Paris was a very pleasant surprise. Our accommodation, L'Hotel de l'Empereur was nothing short of enchanting. What our room lacked in size, it more than made up for in terms of the view. Two large French windows swung open from both the bedroom and bathroom of our 3nd floor, room 23. This revealed a Parisien streetscape filled with the mysterious activity of everyday life during the day and early evening, while proudly displaying the newly bursting chestnut blossoms just like in the old Doris Day song from the movie of the same name,"April in Paris". At sunset the shimmering reflection off the Dome of Napoleon's tomb shone into our windows as if to betray the brilliance and splendor of the historic events this city has seen. At night the streets became quiet, except for a few late nighters strolling home, and the same golden dome lit up the sky in our full view.

Nearby Rue Cler became our daily haunt for its popular restaurants and friendly shopkeepers. We experienced some of the best French food, café au lait, croissants, cheese of every variety, and simply drank in the French daily life. While this was not our "normal", it was clearly that of the French denizens of this upscale neighborhood. It would take too many words to describe (even inadequately) the many images and experiences. Yes, we saw the incredible Versailles, Notre Dame, Eiffel Tower, the Louvre, Champs Elysees, and Sacre Coeur, but it was the everyday adventures of getting places, meeting people, struggling with my French, and just enjoying being together that made our 5 days in Paris so enjoyable.

While there were more than a few occasions when my Parkinson's disease caused me to slow down the pace, fumble even more than usual with figuring out the foreign currency, and shake excessively when seeking to use my high school French in conversation, I never did have to explain in French that "J'ai le maladie Parkinson's", although I practiced the phrase from time to time just in case, without knowing whether that was an accurate description. Having a nap each day helped, including one where I tucked into a corner of the Louvre and slept for an hour while Renae visited a few sections that I had seen before and felt too tired to visit again.

As wonderful as our time was in the French capital city, we were looking forward to our week in beautiful Provence.

Languages, Laughter and Love

Traveling highlights the differences between people. Brits drive on the wrong side of the road, or at least not the right side. And they have several markedly different adaptations of the English language. One that purports to be "proper" (but drops the "r" in that word in the process). And another, spoken by the "ordinary" folk, that arbitrarily shortens that word and others (like "strawberry"). They seem to have mastered the art of developing more idioms than most other cultures (who else has "sticky wickets" and “water closets”).

The Dutch are wired to be stubborn, at least when it comes to protecting their little land from, and expanding it into, the sea. Someday the English Channel may be filled in by a Dutch dike to support the 83rd phase of Rotterdam's Europort. And they speak a guttural language that sounds like they are ready to spit at any time and cannot be spoken with a dry mouth. I will leave French out of the discussion for now. More about them in days to come.

But as I look back on the last 10 days of our European adventure I realize that some things transcend our cultural and language differences. Take our last night in Holland for instance. Before this trip, the last time Wim, Ans, Theo, my wife and I had enjoyed a meal (or anything else) together was almost 10 years ago in our home. Despite this long time apart, and the differences of culture and language, one apparent feature characterized our times together; laughter. Whether it was Theo cooking a culinary feast in his crimson red chef's jacket and hat or Wim picking up lines from our conversation and matching them to his encyclopedic knowledge of rock-n-roll hits (naming the group, year and sometimes writer - did you know the Byrd's 1965 hit "Turn, Turn, Turn" was written by Pete Seeger in 1959?). We laughed until our facial muscles and extended stomachs hurt. It was as if we were a family, sharing a meal, always delicious, and laughing endlessly. It needs no translator and overcomes some of the most serious difficulties.

And then there is love. There is no stronger bond. Like Paul the Apostle wrote to distant friends long ago, some of whom were hurting, "These things shall endure, faith, hope and love, but the greatest is love." It is the tie that binds us together over years and miles, as has been so apparent in our European adventure. Being picked up and dropped off, often at the most inconvenient times and places for them, changing their schedules to fit ours so that we could spend time together, being fed continually from waking until we retired, giving up their bed and bath, and always accommodating us (colds and all) at some personal cost but with no complaint. We have been loved by those we came to see, and we are the richer for it.

When we decided to make the trip to the UK and Europe it was not to see the sights or even enjoy the cultural experiences, although we accomplished some of that also. No, without doubt or hesitation we realized the sites and experiences stood a distant second to family and friends. And laughter and love built bridges that will stand the test of time and even tragedy.

As with traveling, Parkinson's disease can leave us feeling estranged, even isolated. Others do not seem to understand us and the result is alienation. This trip to Europe has convinced me that PD and travel have two secret, common allies: laughter and love. They transport us beyond the bounds of our disease and touch our very souls. They are mystical healers for what would otherwise be a cold and sad drifting into despair.

Inspired by this trip, I, for one, intend to invest more time laughing and loving, knowing it does pay dividends across time, language and culture.

Parkinson's, Planes and Promises

Being positive, whether with Parkinson's or airlines, has its downsides. Sometimes you set yourself up for failure by believing in what you want to believe in without doing the necessary "due diligence" in advance.

By the time I knew there was trouble it was past 10 p.m., London time, on April 1. I was staring at a computer screen wondering whether this was a time delayed April Fools' Day joke. Before me were two completely different pieces of key information. A phone call would disclose a third inconsistent "fact". I was on the Transavia Airlines website. Having stated that, most of you will already guess at the beginning of my problems. Who or what is Transavia Airlines? Up until that night, the only thing I knew was that it flew the cheapest flight available from London Gatwick Airport to Rotterdam, our next destination on our European adventure.

Our departure time for Transavia flight HV 5196, according to the reservation I had made before we left home, was 7:55 AM, April 2. That was still the time shown as scheduled on the website. However, upon checking in online, and printing out our boarding passes, the departure time showed as 6:55 AM. Given that we needed to be at the airport approximately 2 hours beforehand, and the fact that we were about an hour away from the airport, this minor computerized difference of opinion meant a significantly different waking time. Upon trying to telephone to determine the truth, the only information that was given indicated an HV 5196 departure time of 8:10 AM. Of course, given that our friends were going to meet us in the Rotterdam airport, we could not afford to miss the flight and therefore chose the only reasonable alternative, arising before 4 AM to get there in time for the 6:55 AM departure.

The next problem, was it Gatwick North or South terminal? Nothing on any website disclosed the secret departure point. Okay, leaving a little earlier would allow us time to check out both terminals before we would be late.

We arrived at the airport after a very short, and virtually sleepless, night at just before 5 AM. Luckily, our first choice of the North terminal proved correct. After 10 minutes of searching, we were rewarded with information on one small departure board that indicated there was indeed, apparently, a flight HV 5196 leaving at 7:55 AM. However, the terminal check-in location was not identified, although the check-in counter (wherever it may have been) was declared as not open until 5:30 AM. So we sat, watching the sign like a kettle waiting to boil, for some evidence as to where to lug to our suitcases for check-in and confirmation that we did indeed have seats on the mystery plane.

At the appointed hour the electronic departure board gave up the secret check-in counter location as being in "Section H". Relieved, we arrived at the specified single desk check-in where we were greeted by a pair of tired women, with tired lime green uniforms, who were examining passports and asking typical questions like, "Are you a terrorist?" Let us just say that if I described the two Transavia airline representatives as automobile tires, there was not a lot of tread left on them. My first mistake (okay, so it may not have been my "first") was to try and explain the difficulty we had encountered with the confusing departure time information. One airline appointee, Dorothy, simply stated, "Oh yes, I keep telling them about that mistake." My "second" mistake was to innocently ask, "Is the plane leaving on time? Before I was finished the question, she fired back as if I had just asked her age, "We are always on time." I was tempted to ask, but did not for fear of being taken off the flight manifest as a potential subversive, "Do you want to tell me what the departure time is now or wait until the plane leaves?" Instead, I asked the number of the departure gate. She said to watch the departure board and the gate would be announced shortly. I wondered whether that meant that my flight did not have a departure gate because: (a) there was none and this was all a cleverly disguised front to cause me to believe that there was in fact a departure; (b) Transavia had not paid for it yet but was hoping the check would clear the bank "shortly"; or (c) our plane was waiting in some "pay as you go" lineup for a nod and wink from "someone" so that it could slip in, load its passengers and slip out before the real airlines noticed. Being an optimist, I was counting on the latter. In any event, I was beginning to speculate as to whether this was someone's idea of a European Easter egg hunt.

At exactly 20 minutes before the supposed scheduled departure time, the departure board blinked its clandestine code beside flight HV 5196, “Gate 16”. We hurried to the departure lounge along with a ragtag group of other "budget" travelers who could best be described as looking like an international gathering of gypsies. Upon arriving at the gate we were greeted by the same two semi-retired, lime green clad airline agents, barring the runway to the plane door. Amazingly, the wait at the departure gate was short as a disheveled young fellow wearing a vest with reflective stripes poked his head through the runway door and announced, "Okay, let’s board everyone." None of this, "Would all disabled persons, women and children go first please." There was a less than dignified rush towards the plane entry door as if everyone was trying to get into an open seating rock concert.

Getting seated in 6A, I was about to admit that the Dorothy had been right about the departure time, when the captain announced in Dutch, and then in Anglicized Dutch, our flight would be late in pushing back due to…. This announcement was made several times until 8:25 AM when the plane actually left the runway. I wondered whether there was a money back guarantee on any one of the three website departure times.

With discount airlines, as with cures for Parkinson's disease, it may pay to be a little skeptical and ask some serious questions before pinning your hopes on them getting you to your desired destination, on time that is.

Auntie Betty - Parkinson's Disease in Perspective

A shy, almost mischievous grin sets off bright, caring eyes in her face, but her storied life is written in wrinkles like those on a lone apple left on the tree into winter, whether by mistake or intention. Auntie Betty could have been a much different woman.

Losing her mother at two would cause damage enough for most us to require years of psychotherapy. Spending the next four years in a sanitarium due to tuberculosis would qualify us for a life of inevitable fragility. Returning home to a stepmother who had no affection and harsh words for the young girl seeking acceptance would mar us deeply with resentment roiling in our gut. Going to “cripple school”, where little other than basic life endurance skills were taught, followed by regular school in a back brace where daily teasing and rejection were as penetrating as the recess bell, would justify anyone suffering chronic and debilitating depression with recurring night terrors. Then leaving school, skill-less at 14, to become a domestic servant for a family that would desert her in their panicked flight to safety at the declaration of war could easily lead to drug or drink induced escapism. But swept up in wartime fervour and falling for and marrying a soldier she barely knew, moving to a place where she understood little of the language, only to end up divorced within two years, returning home to a twice-widowed father who had no understanding of, or much compassion for, a "boomerang" child would leave most of us angry beyond explanation, capable of heinous crimes or suicide. But not my Auntie Betty. Visiting in the sitting room for much of the afternoon she recalled in crisp detail episodes of her life, smiling all the while, repeating numerous times the sentence, "You see, I was really very lucky."

She sincerely believed she was still lucky, despite having lived life alone in a rough part of London for most her 88 years. Over the past few years she has endured the insult and injuries of being violently mugged for £30. She has fallen in her bedroom late at night while on her way to the "Loo" (you know, WC, facilities, or toilet) where her fragile frame lay helpless for two days until a neighbour alerted the ambulance. She has withstood a litany of medical challenges from ulcerous sores on her legs to cataracts. Even so, she rarely complains and remains stubbornly independent, sometimes frustratingly so, managing with walker or cane.

I love Auntie Betty, despite only having seen her a half dozen times or so over 45 years. I love hearing her repeat her life stories that almost always conclude on a positive note and "I have been lucky". She encourages me when she asks how I am handling my "ailment" while understating her own tremour, which makes it difficult to manage a cup of tea or bowl of tomato soup without spilling.

I am inspired by Auntie Betty, and find myself committing to do my best to honour her pursuit of the positive perspective. To build on the title of Michael J. Fox's first book, the legacy passed on to me and many others by Auntie Betty will be the reminder: “I am a Lucky Man".