Shafts of sunlight poked holes in the heavy clouds that hung on the horizon. My camera attempted to capture the morning of our last day aboard Oceania’s “Regatta”. Like the weather, with its conflicting messages, I had mixed feelings, whilch were like the beautiful sunrise that would disappear too soon. The prior 14 days had been extraordinary but the voyage was coming to an end. There was sadness, as I knew I would miss the people that had made places for us. There was the great Georgian group of six that shared their long-established camaraderie, welcoming us to join them in team trivia where we laughed, moaned at missed answers and celebrated collaborative successes. Lane and Maria from Missouri offered kindness and faith-filled wisdom as we exchanged our life stories over US Thanksgiving turkey dinner. Pausing between Scrabble turns Nancy from Ontario told her story of strength, suffering and survival, giving me encouragement in words and by example. Guy and Marilyn from Florida had us playing Canasta and laughing at their stories. Of course, these are only a few of the new friends who made the past two weeks memorable.
I realized today that when I replay the memories of any vacation it is the experiences with people that matter. When, at the end of my life, I am distilling the accumulation of glossy, electronic or mental pictures, I fully expect to discard the sights and save the faces of friends. What would travel, or life, be without others with whom to share it? It would be as sad as a lonely sunset. To me, living is meant to be shared. I need not fly alone, cry alone or die alone as I am blessed with a sea of friendships, deep and wide, long and short.
But how can the circle constantly expand to accommodate new friends without squeezing out prior relationships? As I age I realize my Parkinson’s disease will diminish the energy I have to spread around. Must I prioritize people? Can I be intentional about friendship without avoiding new friends by being aloof and exclusive? Is it careless to cast one’s heart into the wind like a kite left to explore without controls? Should I conserve my energy and warmth for a few? Can I have too many friends?
In our fickle era, it seems that friendship is often broadly defined. Is a "friend" found on Facebook, next door, at work or in the faded pages of a high school yearbook. It seems that the word “friends” has now been given a modern but relatively meaningless context by a television series. It all leaves me bewildered, searching for something more meaningful. I prefer "friendship" to leave room for interactions that have potential for seriousness and celebration, fun and purpose. For me, there must be some mutuality among friends, although not necessarily in exacting terms, for like a kiss it cannot be maintained without some reciprocity. Communication may well be key, but not necessarily using words. Something must be shared, be it sports or science fiction, gardening or games, passion or pain. Acceptance of the person is needed, but also recognition of differences.
But for me, while friends may be given defining adjectives (“best”, “long-time”, “dear”, “school” or “new”), the category must be kept open. There is room for both planned and serendipitous human interactions, and they can each have significance without demeaning the other. Friendships are not a burden, but expectations are. True friendships at any level offer some degree of freedom, forgiveness and grace. Real friendships are not fickle, cheap or mercenary. They may be limited by time and circumstances, but both can be overcome.
Although there is sadness in goodbyes, I choose to believe they might not be permanent. Certainly, whatever the future brings, my new friends will remain brilliant colours in my life’s painting, sunlight that brightened these past 14 days.
Too many friends? I think not. Just too little time.
Tucked away in the corner of Deck 9 on Oceania’s “Regatta” is a small, but bright, well-appointed Card Room with mahogany tables and cushioned chairs. It attracts those who, like me, enjoy games. When I find myself in that room, its occupants fascinate me. There are elderly women baiting and berating each other as if bantering was the real game being played rather than Mah Jong. Then there are the two male Cribbage players in their 70s who seem to revel in catching each other making “mistakes” in pegging their points. Of course, there are the usual card-playing characters frowning at their hands and bemoaning their lack of a particular suit or the absence of face cards. And while I can enjoy almost any game, I am there to play my favorite; Scrabble.
Now if there were ever a subculture of game-lovers, Scrabble players would perhaps be the standouts. There are no stereotypical characteristics or clothing that identify Scrabble players. They are not like the tweed-jacketed Chess players, fashion-conscious Bridge players or the lone wolf jigsaw puzzlers. Those who enjoy the word game originally called “Lexicon” can only be distinguished by the unobservable; the love of words. There is an odd ability to see the letters in words interact, expand and intertwine in crossword fashion. But for me there is more to this pastime, there is a fascination with vocabulary, the world of words, the more obscure the better.
Isn’t life a little like the game of Scrabble? Each of us gets seven letters at a time and must choose how to play them. It is pointless, literally as well as figuratively, to complain about the letters on our tray. Sometimes the play we choose is small and gains little. But it may lay the base for the seven-letter ‘homerun’ word that earns the 50-point bonus. We cannot always see the possibilities that lay ahead in the game. The reality is that we play our tiles in connection with others. They can both block and facilitate our play by how they take their turn. In the end we define winning as the person who gets the most points. But what if it were different?
Imagine if we could all cooperate by showing each other the letters in our tray, disclosing our weaknesses and strengths without fear that we would be taken advantage of. What if the object of the game was to ensure that all players had the opportunity to make the most of their tiles? What if the key strategy was cooperation instead of competition? Imagine the dialogue that we could enjoy instead of the long moments of waiting for someone else to complete his or her turn. What if we redefined winning as the highest cumulative score?
It seems to me that life is better played as a “team sport". It could be more like the trivia competition we have played on Deck 5 each afternoon in the Regent Lounge. Despite our self-demeaning team name, “Les Miserables’, we have succeeded by each participant serving an important and unique purpose. As in life, with its relational intricacies, each person we meet has a potential contribution to make. Sometimes the role is to muse out loud, risk suggestions that sound silly when spoken or affirm fellow team members. But it seems our culture is built around the concept of "winners" and "losers", with one group automatically defining the other. Someone is right and another is wrong. And I, for one, can so easily buy into that. I often fail to recognize the value of the humility and courage required by those who are not always "winners". I suspect that I am not alone in secretly dreading being labeled a "loser" in this upside down game of life.
As getting older looms, along with my Parkinson’s disease, it may become easier to retreat from the world of competition rather than face defeat. It is likely to be much harder to keep up with the “winners’. The words I play in Scrabble may have fewer points and be less poignant, and the any contribution I can make to a trivia team may well decline. How can I approach this pending reality with a positive spirit?
Scrabble has taught me several useful life strategies. The first is that winning can easily become a narcotic that blocks the joy of just playing. The need for the next “fix” makes it difficult to be either a gracious winner or loser. Second, we can choose to be in a constant learning mode, offsetting to some degree the deterioration of age or disease. Third, and perhaps most important, I must remember that it is the relationships with my fellow game players that count. To fail to learn these lessons is to leave us playing a lonely and sad game of Solitaire. That is NOT the future I want. So let’s just play. Game on!
Mid-Atlantic. Nothing but ocean in every direction. Entirely alone. Adrift with nothing but the winds and currents providing direction. Imagine floating, not knowing what lurks between your bobbing body and the ocean floor, 11,000 feet below. Wave upon endless wave threatens to cut off each gasping breath with seawater. Your body heat is slowly being sucked from fingers, toes, then arms and legs, the hypothermia advancing towards your vital organs. Confusion turns to semiconscious delirium as your mind loses track of time and context. All hope feels lost. It would be easy to sink into the dark, wet, anonymous liquid that surrounds you.
Aboard a cruise ship, at least 1000 miles from the nearest continent, it is easy to feel at sea. Not just in the literal sense, but figuratively. Freed from the rigour of daily demands, schedules and responsibilities, my thoughts are left to toss about like jetsam and flotsam, drifting where they will. Unanchored and aimless, I find that my ideas take undisciplined detours and end up swimming away from the ship toward the distant horizon. I am at sea.
I realized today that having Parkinson’s disease has often left me feeling at sea. Sometimes self-pity and sadness eat at my emotional balance like fish nibbling away at a life jacket. I do not like to admit those feelings even to myself, let alone in a blog with such an unyielding title. But honesty, even transparency, is necessary if I am to regain my bearings. When your world loses the normal geographic markers you cannot but feel lost. Swells of symptom onset can block out any sight of hope and swallow the anticipation and challenge of life’s high seas adventure.
Lost at sea I search for answers, strategies and wisdom. How does one find one’s way when all familiar and firm footing is gone and there are no clear directions? Life for me was once like swimming laps in a pool with lanes painted on the bottom and floating markers on the surface. Each lap brought the reward of touching the end wall, even though briefly, before stroking towards another accomplishment. But now, with PD, I am in open, unchartered waters. The swimming is progressively more difficult, with limited opportunity for any sense of achievement. Each day discloses new potential for drowning. How can I survive? Is there any opportunity left to thrive and find meaningful direction in this vast deteriorating expanse?
How does one survive if lost at sea? How does one navigate in a new world of circumstances never before experienced? Strange as it may seem, I find the sea breeze conjures up lessons I learned from the animated film, “Finding Nemo”, the story of a clown fish that could not be protected after straying from the familiar and fell into danger.
The film repeatedly states the first and enduring rule: “Never panic”. Flailing about emotionally, letting one’s post-diagnostic shock and fears scream out frantically, may be a natural and therapeutically cathartic response at first, but it is unlikely to result in any meaningful plan.
Secondly, Nemo’s father learns that when you are lost, hang onto something that will keep you afloat. Breathe. Be calm. Think. Tread water for a moment. Consider: what do you know that will keep you from drowning for at least the time being? It may be a belief system to which you can cling when the prospects look bleak. For some faith may be as tenuous as a stick of driftwood, while for others it may be as secure as a survival suit. Maybe it is a relationship with someone who can take you through the trauma stage. Or it could be a resource of some other description.
The third motto comes from one of my favourite lines in the movie. Dory, a brave but forgetful fish, keeps motivating herself by saying, “ Just keep swimming”. Other phrases come to mind. “Keep at it.” Don’t give up.” No circumstance is hopeless if we keep on trying. Often the difference between survivors and casualties is simply a refusal to quit, illogical as it may be; a decision to keep on swimming. Even if the prospects of being rescued by some cure-carrying cargo ship seem remote, there are always reasons to be hopeful.
The last of the lessons that I learned from Nemo was that survivors can be buoyed up by friends and family. There is a sense in which we are never alone. We carry others in our heart, as they do us. This gives us good reason to live; to love and be loved by others. Searching solely for self-gratifying survival is to be truly lost, for who will search for you?
I, for one, must each day refuse to stay lost in the sea of Parkinson’s. For I am only truly lost if I give in to the panic and pain, or languish in loneliness. I can thrive, not just survive, by choosing to learn lessons wherever I can, even from cartoon characters.
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.
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.
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.
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.
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?
Diagnosed with Parkinson's Disease in 2006, I was 53. I currently serve as the President of Trinity Western University, of which I am an alumnus. I remain engaged as a lawyer who practices as general counsel to a wide variety of clients, primarily in the Vancouver region of British Columbia, Canada.
Married for 40+ years (to the same loving and long-suffering woman), with 3 grown children, and one grandson. Besides my wife and family, my passion is living the adventure called life as a God-given gift, which includes motorcycle riding, scuba-diving, blogging, Scrabble and looking for the treasure hidden in each day.