I Should Have Known Better

Farid was his name. I knew exactly what to do as he approached us. But I did not do it. His English was only passable, but as with most Arabic speaking men his gesticulations and dramatic expressions told us more than his words. He offered to be our guide, our historian, our guard, our interpreter, our friend, and even our confidant in the mystical Moroccan town of Tangier. Words like ‘kasbah’, ‘medina’ and 'souk' tripped off his tongue, teasing and tantalizing as they would any naïve tourist. But I was no novice. I should have known better.

Almost 40 years ago I had crossed the Strait of Gibraltar into this world of shadows and suspicious looks, where bargains and bazaars were only found down crooked, narrow alleys that would challenge any cartographer. Even at 18 I had learned lessons that should have lasted a lifetime; that friendship with fellows like Farid was either cheap or deep, and it took years to achieve the latter. I learned that if one answers the question, "How much you pay?", or even hesitate a moment, one is making a sort of pact to purchase the item in question, if necessary after a lengthy, emotional negotiation. I learned that the value of something, even a life, is relative. I learned that it is easy to be deceived.

But, as with many lessons, I was bound to learn them again. I should have known better.

The first rule I forgot was, "Never equivocate". We had set off for an afternoon walking aimlessly and unescorted through the ancient town on the tip of northern Africa where the Mediterranean meets the Atlantic. We were determined to resist the unrelenting salesmanship of innumerable cloaked street hawkers. This could only be achieved with modest success by refusing to venture even a glance at the wares being sold, never slowing down, and deflecting any discussion by simply stating a polite but firm, "No thank you". But Farid used a tactic I had never experienced; the recommendation of fellow passengers who had just completed "a delightful tour" with their newfound, smiley Arab "friend". We were $60 suckers for this strategy.

After Farid negotiated loudly with a taxi driver, we were taken to the top of the hill upon which the town had been built over centuries ago. Then for 45 minutes we walked as he showed us churches and mosques, the city fortress walls, a view of the harbour, and even the Moroccan home of Barbara Hutton (of retail store fame). He briefly commented on Morocco’s history, culture, politics and architecture as we walked along cobbled alleyways. Merchants, for the most part, did not bother us, seemingly knowing of my earlier instructions to Farid that we were not interested in shopping or making any purchases.

But then I broke the second rule: "Never enter a store that sells carpets unless you intend to buy one."

In my experience, Arab carpet merchants are the equivalent of North American used-car salesmen. Once you are in their territory they will use whatever means are at their disposal to convince you of your need for their product. For some reason the goods in question are always being sold for a price that can only be whispered, as if to do more would disclose a secret and create a stampede of screaming buyers.

It all happened quickly and without warning. As soon as we entered Mohammed’s store I knew we were in trouble. Before I fully realized our fate, we had made our introductions and were politely and firmly ushered up tiled stairs to the second floor. Trapped. I should have known better when I noticed Farid was no longer with us, having abandoned us to the wiles of Mr. Mohammed, the consummate salesman.

We tried to politely confirm our lack of need or desire for his rugs, but he waved our weak protestations aside and motioned his young protégés to hold up carpet after carpet as he expounded the virtue of carpet design, history and quality. We graciously repeated our disinterest in purchasing. From fawning diplomacy and feigned disbelief to false pride and wounded dignity, he tried them all. Seeking to be courteous, we mistakenly acknowledged the good quality of his carpets and pointing to the one we liked best. At this point, feeling what he thought might be a nibble on his line, he began aggressively negotiating against himself, dropping his price from $1500 to $750 followed by $50 increments until he hit $300. I knew the tactical dilemma we were in when he asked the next question. We could not respond to his frustrated challenge: "Name your price; any price", without being lured in. So we repeated endlessly our firm but respectful, “No, thank you”.

After 30 or more minutes of his imploring and our refusing it was time to escape before we gave in due to fatigue or just to placate his persistent pitch. But even as we made our way to the stairs, he followed, unrelenting as he stood in our way and whispered in Renae’s ear, “Okay, $275. A crazy price!" Finally we made it downstairs and reached the outside door where we found Farid finishing his last of what must have been a number of cigarettes. But even then Mohammed begged us to buy the carpet at $250, then $225.

On the street I was embarrassed, exhausted and angry. Farid knew it. He no longer maintained his animated chatter. Our “friendship” was over. Having missed his opportunity for a carpet sale kickback, he quickly pointed the way to our ship and was gone.

Life is a series of lessons. The things I have learned, especially from Parkinson's disease, are often as fundamental as following the rules, like a paint-by-numbers picture. Farid taught me again that most of the time I simply need to remember the lessons learned and apply them to the circumstances. I should have known better.

Handcuffed in Barcelona

Ever been handcuffed? I never had been either.

We had checked in to our modest hotel, Flor Park, right on La Rambla, the most famous street in Barcelona. A short distance away was a square, La Placa Reial. There, in the mid-afternoon sunshine, was the perfect location for a leisurely lunch. After 20 hours in transit, from Vancouver, through Seattle and Amsterdam, we were exhausted and hungry. Hungry both for the sights and sounds of this vibrant Catalunyan (not really Spanish) city perched on the Mediterranean, and some good food. We found both at Les Quinze Nits, where we spent the next three hours watching the jugglers, gymnastic troupes of young men of African descent, the elderly Flamenco dancer complete with castanets and his 1 foot square piece of plywood to dance on, and people of every description. Like the Chinese Canadian family on vacation from Qatar where they had been working in oil and gas the past 10 years. Then there was the young American couple with 14-month-old Elena, which left us missing our grandson, PJ, on this his 2nd birthday. And the mass of well-dressed Europeans laughing and enjoying the atmosphere of the palm-tree-lined streets with their eclectic architecture.

We realized after savouring a pitcher of wonderful Sangria that we were in no shape to see the tourist sights, like the Gaudi cathedral, some 100 years of peculiar architecture in the making and still unfinished. We decided instead to stroll Las Ramblas, the activity and pickpocket centre of the city. The boulevard is lined with shops and restaurants of all descriptions, more like a market. But of particular interest to the crowds are the human statues, remaining perfectly still in a variety of poses, unless someone puts money in the receptacle set out for that purpose, at which the statute winks, waves or utilizes some trademark move of acknowledgement.

And it was in the crowd watching (if one “watches” a statue) a particular performer that I noticed the disturbance. Two men dressed roughly and looking like most any other local were handcuffing two other men who were dressed equally roughly. It was hard to distinguish the perpetrators from the policemen, which I assumed was the reason the thieves had been caught, obviously trying to steal a purse from a woman standing nearby who watched near the crooks with a look of combined relief and anger as she clutched her designer handbag.

I found myself thinking of the idea of handcuffs. They are designed to limit movement, thereby restricting one’s freedom. Sometimes a person is handcuffed to something, preventing the ability to leave detention. Other times a captive is handcuffed to another person, meaning that movement is directed by one of them. But often, the handcuffs simply limit the ability of those wearing the manacles to freely move their arms and hands. These “bracelets” constrain freedom in one way or another, as does Parkinson’s disease.

So while I have never been handcuffed in the criminal sense, I was able to relate to those two men with their hands bound behind their backs. Freedom for us was limited. In my case it was not due to any crime or wrongdoing (at least not that I am aware of) but simply by genetic predisposition or being in the wrong contaminated place at the wrong time.

But are we not all handcuffed to some degree? Perhaps by our upbringing, or our bodies, or our memories or circumstances. But we are all limited in our ability to be totally free.

Positively Parkinson's: the Beginning

This blog started in August 2009.  As it has grown and evolved, I thought it worthwhile to revisit the first posting.  Remarkably, some 133 posts later, the beginning remains relevant today.

Parkinson's disease (PD) starts out as innocently as a small outbreak of acne. It is annoying at first, but generally goes unnoticed. A few people seem to have eyes that see the rather unappealing flaws, but most don't much pay attention. But week after week, month after month, it gets worse. More people look at you a little too long with that quizzical expression (you know, the one that says, "There is something wrong with this picture. Now what is it?"). You are increasingly bothered by this "condition" that does not seem to go away. At some point you see the doctor. You expect the dismissive, "take a few of these pills once a day for the next two weeks and that nasty problem will disappear". Instead, after a few rather innocuous tests the unsmiling man in the white smock tells you the news that will change your views of your genetic heritage, upbringing, work, family, and/or even God (there has to be something or someone to blame). In short, your whole worldview is shaken. Most of all, the diagnosis immediately distorts your sense of the future.

There is no doubt after a second or third opinion, it's POSITIVELY PARKINSON'S. This is a life-altering, "incurable", degenerative and ultimately debilitating disease. This dying of dopamine in the brain, and its consequences, begin to define you. A thousand times a day your mind repeats mournfully, "I have Parkinson"s Disease."

The good news (of which there is precious little) is that you are unlikely to die from PD. The bad news is that you must learn to live with its greedy encroachment on "normal" living. And you have no idea how to do that!

PD is not a disease you can hide for long, although one becomes very adept at doing so (sitting on my jumpy right hand is my personal favourite). It is not a disease that progresses or evidences itself predictably, even day-to-day. It will certainly humble and frustrate you as it progressively conquers your limbs one by one, but no one will predict exactly when or how . Its symptoms might be 'treatable' by a plethora of pills, but at some point the adverse affects of the meds may be worse than the PD itself. There may be pain or not. Tremors or none. Stiffness might convert your face to an unblinking, expressionless mask and your legs to planted stumps. Depression, insomnia, loss of smell, and/or fatigue may invade your experience. The picture is not pretty.

Writing a blog focuses the mind. Writing one about living with a disease that has the disturbing ability to incessantly remind you of its unwanted presence is like looking through a microscope. It can be a frightening picture; like a horror movie with a progressively more scary storyline. No happy ending!

But must those of us contending with PD be permanently relegated to the ranks of those pitied by others (and sometimes ourselves)? I say "No!" After all, "normal" really is just a setting on a dryer. There is so much we can do. It was my 22 year old daughter who came up with the name "Positively Parkinson's" as we drove together from the Seattle Airport to our home in Langley British Columbia and talked about this risky business of blogging. I told her I wanted to start a blog to share words of encouragement with others dealing with PD, and those who care for or about them. The name was perfect.

So here it is, the beginning. I intend to post entries as often as my schedule allows. I invite feedback and comment; good, bad or ugly, I will try not to take it personally.. I will share stories and ideas (and I invite yours).

My hope and prayer is that this modest and personal attempt at sharing my PD journey and exploring ideas of how to live positively with it will somehow encourage others facing the often overwhelming and always uphill uncertainty of life with PD.

We can be "Positively Parkinson's"!

STAYING POSITIVE WITH PARKINSON'S (Part 3)

Speech given to Parkinson's Society of British Colunbia Conference "Moving Forward" (October 31, 2010) - Part 3 of 3 Parts.


How can we stay positive in our day to day battle with Parkinson's?

Let me play the part of the Wizard. Not the omnipotent one with the booming voice, but the little guy who may have a little bit of the solution for the moment. Most of it is just common sense. But as with common sense, it bears repeating.

For sake of maintaining the imagery, if nothing else, let us return to our 3 friends who sought answers from the Wizard.

The scarecrow thought he lacked a brain. In fact, he simply needed to learn how to use his brain better. Now in our case, our brain is failing to work to its optimum levels. We know that it is not producing enough dopamine to do the job. And, unfortunately, it is producing less and less all the time. The greatest fear that most of us have is that this will lead to mental deterioration or an increased level of cognitive dysfunction.

But there are ways we can fight back. We can learn more about the disease we have been diagnosed with. While we may not be able to delve into the neurological niceties like the medical profession, we can certainly increase our knowledge of the enemy. Further, we can challenge our mental faculties. Do crosswords. Play Scrabble. Take a course in night school. Read. Engage in a discussion with a local support group. Ensure that you are challenged intellectually everyday.

In the end, the Wizard gave the scarecrow a degree in Thinkology. It recognized the scarecrow’s ability to think. Today your reading of this diatribe entitles you to the same degree. You just need to consider how you will employ your mental ability.

The tin man thought he lacked a heart. The fact that he was made of metal, unbending and unyielding, didn't help.  Found frozen, he effectively portrayed a person with Parkinson's who, expressionless with a Parkinson's mask, cannot seem to move.

Often my body, at least the right side of it, feels if it were made out of tin or some other metal. But there are ways to fight back.

Physiotherapy, massage therapy, Pilates, and exercise have all been shown to have a positive effect on the symptoms of Parkinson's, especially those related to stiffness and flexibility. This takes time, as do a number of the other antidotes for dopamine deterioration. But we are not helpless. We are not victims.  Perhaps we need the accountability of a personal trainer, or simply someone to go with for walks, stretches or to community classes. But we can fight back.

Another aspect of the tin man was his need for emotional tenderness. I know, sometimes people with Parkinson's are too emotional. However, Parkinson's too easily becomes a self isolating disease. Most of its symptoms are embarrassing. The tremor, the stiffness, the shuffle, the mask. Social environments are not places of comfort. This is where the gift given by the Wizard to the tin man became appropriate. It was a heart made of velvet and affixed to his tin chest. It was as if to say, I am willing to show my heart to you and share my heart with you. We need to share this journey with others who understand. It could be a support group or just meeting for coffee with one or two others. It is never healthy to be a Lone Ranger with Parkinson's disease.

And what about the cowardly lion? Fear left him quaking and feeling inadequate, lacking in confidence. I believe that is something felt by everyone with Parkinson's disease, at least to some extent. Fear of the future. Fear of disability. The fear of loss. Fear of being a burden. Fear of not being able to cope. Fear of rejection. Fear of inadequacy. We need courage.

Courage is a curious word. It originates from the French word for "heart", "coeur". Literally, it is having heart. This "heart" comes with a sense of conviction to accomplish something in the face of fear. Courage does not exist except in response to fear.

My son served in the US Armed Forces as a Navy medic, a corpsman. He was deployed with the Marines to both Iraq and Afghanistan, and saw action in both places. In discussing some of his experiences, I will never forget what he told me. He said that he was usually afraid, and he knew others were as well. Being shot at, seeing friends wounded and killed by snipers, in fire fights or by IEDs on some foreign dusty road. Who would not experience fear? But the person who scared him most was the fellow soldier who was not fearful at all. That was unnatural. For it is human to be fearful. To be brave, courageous, is to act in the face of fear.

We all have a choice as to what we do with our fears. We can have courage and face our fears, or we can give in to our fears. I do not know about you, but I want to be a person of encouragement. That literally means to put courage, put heart, into someone else. I do not want to be a discouragement, removing the courage from someone by the way I fight my PD.

It is great to have the superstars fighting against Parkinson's disease. People like Mohammed Ali, Michael J. Fox, Brian Grant, Janet Reno and Davis Phinney, to name a few. But what we need is everyday champions who show others what courage means away from the limelight. And in the process we can encourage others to do the same.

Do you remember what the Wizard gave to the cowardly lion to combat his fear? It was a medal with a single word on it: "Courage". Because of this reminder the lion knew that despite his fears he could always have courage.
How do we stay positive with Parkinson’s? We can all do something in the effort to beat it. Fundraising efforts not only raise money for research to find a cure, but also awareness of this disease that needs to be beat.

We can all do something to find ways to treat it. Participation in trials, studies and practical evaluations of alternatives can help offer real promise in the years ahead.

And most importantly of all, we can cheat the enemy of its daily grip on us, meeting our opponent where we live, every day, in every sphere of our lives. We can focus our energies, our creativity and our resources on finding better ways to live with this unwelcome disease. Study shows that how you react to the disease will not only allow you to cope better, but the symptoms will be less.

As for me, I propose to keep on fighting.  I will ride my motorcycle as long and as far as I can do so safely. A couple of weeks ago I went to the World's Parkinson's Congress in Glasgow Scotland to learn more about this disease and the efforts to beat it and treat it, as well as meet people who are doing a tremendous job of greeting its challenges every day. And I will continue writing this blog in my own attempt to encourage others by sharing my thoughts and experiences from wherever the battle may take me.

Back to our Wizard of Oz friends. Were any of them cured? No. It was a number of simple things that made them all more fully alive and functional. As simple as ABC. It was their attitude. It was their willingness to believe. It was their courage. That is how to stay positive with Parkinson’s: ATTITUDE, BELIEVING and COURAGE.

STAYING POSITIVE WITH PARKINSON'S (Part 2)

Speech given to Parkinson's Society of British Colunbia Conference "Moving Forward" (October 31, 2010) - Part 2 of 3 Parts.


How do we defeat Parkinson's?

First, we can beat it. We must continually search for a cure. Now that would truly defeat this terrible disease. It would be great if, like polio or tuberculosis, we could virtually eradicate PD from our world. Like never before resources are pouring in to solve the problem of Parkinson's, and researchers are pouring over an increasing supply of information, studies and data. There is hope that in fact the wizards of our medical profession will find a solution to our problems. It will happen. We must never let our enemy convince us that our cause is lost, that Parkinson's will prevail. To the extent we can, we must put our shoulder to the wheel of scientific discovery, urging others to recognize that this is a beatable disease, a winnable war.

This is an especially difficult battle because our neurological enemy has chosen to attack our senior most vulnerable community members. In an age where youth dominates cultural values, the pains and plight of our elderly have often been given a low priority. Given that the largest majority of people with Parkinson's are diagnosed after the age of 60 it is relatively easy for younger folks to conclude, "well, that is just what happens when you get old". Our society has converted our esteemed elders to our ignored elderly. Of course, there is an ironic cultural twist that has occurred. Everyone wants to stay young longer, live longer. But few people seem to be seriously considering how to deal with the consequences of living longer.

So it is the younger members of our Parkinson’s disease community that must speak out and garner the attention of our youthful culture. I must speak for my father who died two years ago from complications related to PD.

I would venture to say that without Michael J. Fox, even with Ali, the cause of Parkinson's disease would continue to remain largely unknown, something relegated to people hidden in seniors facilities. So we must take a page from his book. We must take the battle to the enemy, and convince others that Parkinson’s is a cause worth fighting for.

This will require us to maintain hope, keep a positive expectation that, given enough effort, time and money, some wizards somewhere will be able to discover the vaccine that will truly solve the problem of Parkinson's. And even if a cure is not found in time for us to benefit, then we will have been part of the solution for future generations, putting Parkinson's in its place, freeing people from its grip.

The second way we can defeat Parkinson's is by treating it. Just because we have not found a cure yet does not mean we have to accept that its symptoms need to increasingly sap our strength or steal our vigor. Medications are improving all the time, providing an answer to the debilitating effects of the disease, at least for a while. Despite the challenges that new drugs face when seeking approval, the pharmaceutical industry is discovering more sophisticated, long-lasting, less disruptive medications with fewer side effects. We need to be involved in this process. If we can be participants in studies and trials that enable better decisions to be made, we can be part of the solution for many. Recently surgery in the form of deep brain stimulation seems to provide a way to stem the worsening of symptoms for some time. Stem cell therapy may also provide some answers to the mystery.

If we found better ways to treat or slow down the symptoms of PD, relieving us of its continually tightening grip on our bodies, this would make it easier to bear. It would help us defeat at least the power if not the presence of Parkinson's.

The most important way to defeat PD is to cheat it of its power one day at a time. Even without pharmaceutical and surgical interventions, there are things that we can do. We can meet this disease head on with all the mental, emotional, physical and even spiritual determination necessary to defeat its claims on us. Rather than deny its existence or its effects, or submit to its powers, we can meet PD like a worthy adversary. Look him in the eye. Shake his hand. Come out fighting.

It is the daily battle where each of us has a role to play, whether we like it or not. The one thing about Parkinson's disease is that it is difficult to hide. Other diseases afford an illusion of wellness. PD becomes all too obvious all too soon. Inevitably, we attract the sidelong glances of people on the street who do not understand why we walk the way we do, shake the way we do, or talk the way we do. The fact is we will be watched, assessed and observed wherever we go. We will be constantly measured for how we respond to this disease. Will we give in to this bully? Or will we be a warrior who meets the threat head on? It is through confronting the daily struggle where we can truly shine. Here is where we can fight face-to-face with our opponent.

Of course the question is, "How?" How do we stay positive despite having Parkinson’s? It can seem overwhelming. But let’s recall what happened to the film, "The Wizard of Oz". It was not a big winner at the Oscars, taking 3 awards, two of which were for music. It barely gained recognition during its initial movie house run. But through perseverance and re-releases it slowly grew in favour with audiences, mostly due to television some 16 years after it was released. Now the Library of Congress lists the movie as the most watched movie of all time. It is usually ranked in the top 10 of the best movies of all time.

So how can we too stay positive in our day to day battle?

Continued tomorrow

STAYING POSITIVE WITH PARKINSON’S (Part 1)

Speech given to Parkinson's Society of British Colunbia Conference "Moving Forward" (October 31, 2010) - Part 1 of 3 Parts.

1940 was a magical year for movies. Bob Hope hosted the 12th Academy Awards for the first time, and the competition was extraordinarily fierce.  There was Stagecoach, Goodbye, Mr. Chips, Mr. Smith Goes to Washington, Of Mice and Men, and, perhaps the most famous, Gone with the Wind (which walked away with 10 Oscars).

Now, tell me which film is missing from that list of 1940 Academy award-winning movies?  Let me give you a hint. What do Bert Lahr, Ray Bolger and Jack Haley have in common?

The Wizard of Oz. While it only won a few second tier Oscars, it has become a rival to any of the other nominees from that year of great cinema.

There were 3 curious co-venturers that accompanied Dorothy on her magical mystery tour of the Land of Oz. They were all searching for something.   Little did these 3 oddities appreciate that they were, in combination, representative of people with Parkinson's disease. In fact, the movie itself can be seen as an allegory for how to approach this downright nasty neurological disease called Parkinson's. To use the words of Dorothy, those of us who have been diagnosed with PD can say, "Toto, I've a feeling we're not in Kansas any more." Life will never be “normal” again after entering this new reality of Parkinson’s.

As the story goes, soon after Dorothy is transported from Kansas to Oz she encounters her new friends with their interesting problems. First came the scarecrow. He struggled to keep his balance, found it difficult to walk straight, was weak and had poor posture. He apparently lacked some mental functionality and was searching for a brain. With Dorothy's help he set off to find one.

Next they meet the tin man. Dorothy found him in the forest, frozen, his joints unable to move, unable to speak, and somewhat helpless. With a little care, he was restored to some semblance of functionality, and joined with his rescuers in his quest for a heart.

Last came the cowardly lion. He wept easily, jumped when startled, and generally was shaking in fear about virtually everything. He desperately wanted to be brave. And so, with his newfound friends, they were off to see the Wizard who would solve their problems.

Despite their various needs and inadequacies, Dorothy and her 3 new friends endured numerous adventures and disillusionments. The cruelest of which was the unveiling of their false Messiah, a Wizard with more whiz than wisdom.

Now despite the fact that the Wizard was a hoax, Dorothy and her 3 friends seem to be willing to suspend their disbelief long enough to be convinced that the Wizard had the ability to get them what they needed.  Perhaps we can together learn something from them about how to move from PD victim to victor.

It was January 19, 2006. I was 53 years old, the founding partner of a successful law firm. I loved my job and had no plan to retire. I had been healthy my whole life, having competed in recreational triathlons for more than a dozen years. I had a great relationship with my wife of 32 years, and our 3 children were launching into their adult lives. I was blessed beyond what I had ever dreamed. And I believed that life would hold more of the same in the freedom years ahead. But all that was before I walked into a neurologist’s office to ask a simple question about an intermittent mild tremor in my right hand.

What followed was not tears or anguish, but simply shock.. It was really a form of denial. I fully believed that the doctor was right, but somehow could not imagine the diagnosis translating into anything other than an inconvenience. I did not want to believe that any disease might steal my profession, my athleticism or my confidence.

Well, it has taken a little time, and it has evolved very slowly, but it has become more than a minor convenience. I have become mostly left-handed. From shampooing my hair, brushing my teeth, using a fork to eat, I need my left hand to perform most of the things that my right hand would have normally done. I stopped being able to write, and shortly after could no longer effectively type.  I often found myself incredibly tired with a bone-deep fatigue.. I now have developed stiffness on my right side and sometimes experience pain, especially in my right big toe and right forearm, both of which seize up from time to time. I have lost my sense of smell almost entirely. I have gone through some times of sadness, which I would characterize as low-grade depression.

On the other hand, my balance has remained good, my cognitive functioning reasonably normal, and I have not had an episode of freezing up or dyskinesia. While I have made no particular secret of my PD, many people do not know that I have it, and when they find out they are surprised because I seem to have developed a knack for hiding its symptoms. While more than an inconvenience, life goes on pretty much as normal. I still work too much, exercise too little, say "yes" too many times.

But, like the 3 friends who accompanied Dorothy to find the Wizard, all ofus who share the diagnosis, at least to some extent, share an increasing number of problems.

Our response might be summed up in one tough question:

How do we defeat Parkinson's?.

Without sounding like a Wizard, let me suggest that there are 3 ways by which we can defeat Parkinson's disease and thereby stay positive.  We can beat it, treat it and cheat it of power, meeting it head on every day.  We will explore each in turn.

Part 2 tomorrow

Change - A Parkinson's Disease Challenge

"You don’t know what you don’t know", drawled the southern-born-and-bred construction project manager. We were in the middle of negotiating a multimillion dollar contract, trying to anticipate all the "what ifs" of the next 2 years of construction so that we might avoid those pitfalls in the agreement. I had not heard the statement before, but it baffles me still. It sounds Zen-like to me, ranking right up there with a current favourite phrase, "It is what it is". Some of his other southern colloquialisms were more easily deciphered, such as, "that dog don’t hunt", which he used whenever we could not make headway on a particularly difficult negotiation issue.

Whatever the statement may mean, it certainly applies to the experience of change. Life is full of twists and turns, most of which we do not see coming. Even before my diagnosis of Parkinson's disease almost 5 years ago, there had been plenty of unanticipated events. Things like conflicts that arose seemingly out of thin air, opportunities presented themselves unannounced and losses swooped in like birds of prey.

When it comes to the changes that Parkinson's disease brings, I relate to that iconic philosophical giant, Meg Ryan, who once said, "People are always telling me that change is good. But all that means is that something you didn't want to happen has happened.” Not only does the diagnosis of PD constitute an unwelcomed change akin to a stampede of 1000 panicked steers, it continues to morph and move, bob and weave, speed up and slow down on the evolving experience of the unexpected.

Change. It is inevitable, and often painful. And yet somehow it seems normal and necessary. It often requires a great deal from us: adaptability, strength of resolve, risking uncertainty and focused discipline. The curious thing about change is that when it just happens serendipitously, or occurs as a result of someone else's decision, we usually resent the interruption in our "normal life" and fear that the change will affect us negatively. However, when we are the ones to make a decision to change, we somehow believe it is for the best. In other words, change by our choice is preferable, perhaps because it creates a deluded feeling of control.

Whether change is of my choosing, or just "happenstance", and despite how I may feel from time to time, I choose to believe that change has an undisclosed purpose. If I search for that purpose, like the secret key to a hidden kingdom, I believe I will find it and in the process discover much-needed perspective. Though it may be with tears, change must be embraced so that we may discern its lessons. Retreating from or resisting change can leave us victims, clinging to the comfortable, never victors, pursuing the possible.

“The most important thing to remember is this: To be ready at any moment to give up what you are for what you might become.” W.E.B. Du Bois (civil rights activist)