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)

What Every Person with Parkinson's Disease Needs From You.

Who has not been tongue-tied, felt the uncomfortable hush, struggled to find words and looked away when confronted with the news that a friend or family member was facing a difficult health threat. Whether a diagnosis with cancer, discovery of a tumor, loss of a limb, a heart attack or stroke, they all leave people fearful. And not just the patient. There is a veiled anxiety that seems to well up in those “exposed” to words like “Parkinson’s disease”. It is not that PD is contagious. But sometimes it has a similar affect. Entering the world of medical mysteries, unpronounceable polysyllabic nomenclature and the smell of antiseptic hospital rooms are scary to most.

Whenever I tell people I have Parkinson’s I watch carefully for the response. There is always discomfort. Sometimes it is veiled, but I can almost hear the unspoken question, “What do I say now?” What can one say to someone who has PD? I have previously shared what I believe we do not need. Now the harder question.

What does a person with PD need from others?

Hope. We all cling to it. But can you really give another person hope? How? Start with what gives you hope. Encouragement comes in different packages for different folks. Others give me hope by believing in my ability and resources to confront this ever-growing giant. Hope is a simple spark of inspiration, not a bonfire of assurances. It is the small things that give me hope.

Respect. It is not lost overnight, but the reality that the inevitable PD label will relegate me to a place of irrelevance and ineptitude is frightening. A sense of fading to invisible strikes at the core of self-worth. Yet the ill have much to contribute, just not in the same way as do the healthy. And if the reality discloses that indeed the light is dim in our eyes, remember us when we were at our best.

Patience is a rapidly vanishing virtue in our world impressed with better, faster, bigger and sooner. “Now” is the cry of a culture addicted to immediacy, preaching that hurrying is a prerequisite for survival. Giving people with PD the gift of patience is enormous. We normally feel guilty, or at least embarrassed, about being slower and more awkward than the norm.

Everyone needs a sense of purpose. More so people with Parkinson’s. It may not be performing world record accomplishments, but it might be as fulfilling as improving performance at Scrabble, taking an adult education course in photography or even writing a blog. But we all need to have something to aim for. We need to answer the daily question, “What gives me a sense of anticipation and makes me excited about the day?” You can help someone who is ailing by encouraging and supporting him or her to pursue a passion, march into each day with a purpose. My much loved and missed friends, Arnold and Helen Essler, despite being elderly and struggling with debilitating health issues, prayed daily for lists of people, me and each member of my family included. Priceless!

To Be Heard. Often, the loneliness of bearing up under a devastating disease can be more crippling than the disease itself. Pain, loss and the prospect of disability are isolating. Everyone finds it difficult to talk freely about the “elephant in the room”. We who have PD do not want to whine or be the focus of fussing, at least not most of the time. While, at the same time, those who do not understand the diagnosis are never quite sure how to carry on a conversation. Glib “fix it” conclusions like, “It could be worse” are dialogue killers. So, when confronted with the awkward truth of a friend’s diagnosis, don’t try and come up with some home cooked solution or some insightful remark.  Just listen to understand. Ask open questions like, “How do you feel about that?” or “What does all that mean for you?”  This is ‘active listening’ that gives the best opportunity to understand.

People with Parkinson’s are no different than most others facing the expanding challenges of aging and living well. We all need others to be there for us. We all need to know somebody cares.

Positive About Parkinson's Disease? Who Are You Kidding?

Twyford is a quiet, modest English village found just off the M4 motorway, 35 miles (50 kms.) east of London. Its name means “twin fords” and, indeed, there are two fords near town. Life sometimes has two fords. Some do not make it across the first one for lack of a sturdy staff or helping hand, and give into the powerful current and get swept downstream, perishing in the dark waters.

The Twyford and Ruscombe Cricket Club recently lost a valuable member. Rod was a 44-year-old accountant who, in addtion to his tireless dedication to his job, was loyal to his team. Sure, he was quiet, like the town he lived in. But family and friends loved him. Despite all that, in the early morning hours of May 16, 2010, in the parking lot of a super market about a mile from his home, Rod was found in his car, dead by his own hand. He could not make it through the deep water at the ford. Would that someone was there to encourage him in a way he could hear. Someone who could break through the dark depression, the hopelessness. No doubt there were those who tried.

Rod had Parkinson’s disease. Diagnosed quite recently, in 2007, and he seemed to be coping well, however, the note he left behind told otherwise.  The prospect of a future with this degenerative disease whittling away his youth and vitality caused him to despair. Just when he was beginning to enjoy vacations and time off, the fruit of his hard work, he was confronted by the formidable challenge, the unexpected “ford”. The current was too strong.

Suicide leaves a legacy of pain and irresolvable guilt. Surely, life has significance beyond disease. Yet we so easily lose perspective when our anguish and anxiety, like a cancer, are kept inside. Fear and worry fester uncontrolled when undisclosed, secretly corrupting every hope until death seems to be the only choice.

Life is meant to be lived in relationship, in family, in community, as part of a team. Solitary confinement in the cold darkness steals our sanity. We were made to relate to others, to share our deepest and darkest depression, exposing its delusions to the light of another's eyes, allowing love, as raw and clumsy as it can be sometimes, to warm us. We are not meant to be alone. Ask yourself: "Would one Chilean miner trapped alone underground have survived the first 17 days if there had been no voice of hope?". We need each other!

When we lose someone like Rod, we lose a little of ourselves. We must band together as a team. We must refuse to let the beast of PD conquer our will to live. We can share this treacherous journey and give courage to each other and those who follow. Let us, together, commit to fight the fear and cling to hope, whatever happens. If not for ourselves, then let us do it for others who, like Rod, need the will to live.

Thanksgiving and Parkinson's Disease

The room was filled with an expectant hush as Tom Isaacs, co-founder of Cure Parkinson's Trust, struggled to the platform to speak at the morning plenary session of the World Parkinson's Congress. Despite the early hour, and my recent arrival in Glasgow, having endured two 14 hour trans-Atlantic flights in the prior 5 days, I was there to hear from someone I consider a champion for those of us battling Parkinson's disease. His movements were clearly dyskinetic, illuminating his words as if brilliant multi-coloured neon was flowing though them. Together the content and physical context of his presentation portrayed a powerful message. For here was a man who did not just speak about the disease, he lived it, unashamed and out loud.

"My glass is always half full," he quipped, "mostly because I spill the rest." The message: Despite the disease dogging his every step, this optimist's cup was full to overflowing. He spoke of the positive aspects of Parkinson's and, given the title of this blog, I resonated with his theme, made all the more poignant by contrast with his uncontrollable demonstration of the disease. He was constantly moving. It was not a tremour like I get in stressful circumstances, but full-blown dyskinesia; squirming, almost flailing, movements that would have kept many speakers from ever daring to climbing to the podium. But instead of distracting my attention from his words, the movements were like punctuation, bringing the message to life. It was real life in its unadorned state. Life with pain, discouragement, frustration and fear that the worst is yet to come. Life where one is constantly misunderstood, mislabeled and pitied.

On this day before Canadian Thanksgiving, I am reminded of his attitude. His speech's alliterated headings stuck with me as hooks upon which hung the fabric of optimism. Being. Belonging. Becoming.

Being is the definition of who we are. We who share the diagnosis are easily led to believe, either by our own misguided introspection or the ignorant assessment of others, that we are defined by the disease. Indeed, we attended the second World Parkinson’s Congress because we are “Parkies”. It is like the colour of our skin, our language, our creed.  It is our genetic predisposition and the accumulation of a life of absorbed toxins. But it is not who we are. On the other hand, we need to accept this unwelcome disease as a part of who we are so that others can do likewise. But we will no longer be those of the “hidden disease”. We are 4 to 6 million people with Parkinson’s, a disease that we are dedicated to defeat.

Belonging is not limited to identification with our fellow Parkies, marginalized in society by our membership in those ranks. We belong in the world of healthy people who often vacillate between ignorance and pity. We can contribute much to a world that must realize if one suffers then, to some extent, all suffer. Like the worldwide economic collapse we are currently seeing played out, we are incapable of insulating ourselves from each other. We who share Parkinson's are the vanguard for others who will face a fearful future of aging and its attributes, including, for some, PD. I am thankful for my PD family, but I cannot allow the comfort of that community to isolate me from a belonging beyond its boundaries.

Becoming is a word for the future. We need not accept a fatalistic destiny of demoralization. True, a degenerative disease has invaded our sovereignty, but how and at what speed it will advance cannot be predetermined.  Yes, the disease will likely challenge our definition of "normal", but just the process of aging, surviving, in this rapidly changing world will do that.  But do not lose hope.  Just think of the medical and pharmaceutical advances made in the past few years.  We are making significant headway in understanding what 200 years ago James Parkinson called the "shaking palsy".  In the meantime, what are we becoming?  How are we confronting this ominous opponent?  How are we living so that others are encouraged to fight on, to have hope and turn the tragedy of PD into the triumph of our God-given human spirit?   Rather than becoming more disabled, are we becoming more empowered?

Tomorrow, Thanksgiving day in Canada, I will not be thankful for Parkinson's disease, but I will truly be appreciative of Tom Isaac's reminder that I am not a victim but a warrior.  And I fight not alone but among a formidable fellowship of brave and supportive souls like Tom, Bryn, Jon, Vicki, Sara, Becky, Jo, Karen, Mark, Paul, John and others too numerous to mention.  They are my heroes for whom I am thankful.  They help me to become more than I would be without PD. 

Happy Thanksgiving from Canada.

See last year's Thanksgiving post,

Parkinson's Disease: The Dilemma of Donating to the Cause

Acrobats and auctioneers, black ties and ballroom gowns, speeches and singing, lights and liquor. They were all there that gala evening. Entertaining all the while, we encouraged, or even inveigled, the well-dressed crowd to give to the cause. It was a good cause. A great cause. I could not be more motivated to see it supported. It was for Parkinson's. Money is needed to find a cure for the millions slipping down the steep slope of suffering. And to save others not yet diagnosed from a similar fate.
So why did I feel awkward? Why was I conflicted? It was probably just me, but that niggling question grew that evening until, like Brer Rabbit stuck in the tar, I could not free myself of it. It was a bothersome boomerang of discomfort. My parents, who were far from well-off, not only gave sacrificially to church and charity but made sure their children understood the need to do likewise. For all of my adult life I have been involved in helping to raise money for, and giving to, worthy causes.

What do you give money to? Why? I am ashamed to admit that often I give out of pity, guilt or pressure. Maybe that is acceptable if the cause is worthy. But why the angst about raising money for PD?

Walking out of that posh hotel, past the mahogany lobby furniture, the doorman unnecessarily aided my exit into the chilly night. The autumn air struck me at the same time as a foul-breathed man poked his grease-stained baseball cap at me. "Spare any change?", he slurred. "No. Sorry", I lied and quickened my pace. Then the answer to my troubling question struck me. I was afraid of being that beggar with the baseball cap. While my cap had the words "For Parkinson's Research" on it instead of "Joe's Towing and Storage", how was I different from the panhandler?

If we who have been struck with PD are raising money just so that we can be cured of a future of slurred speech and staggering steps then perhaps we are no different. There is a danger in this business of putting our hands out with self-serving purpose. Is there a conflict of interest? But perhaps this is the cynic speaking.
Does it not depend on more than the worthiness of the cause or how money is raised? Surely it must depend on the motivation of the donation-seeker. If we knew that, no matter how much money was raised, only future generations would benefit, would we have the same spirit of enthusiasm and effort? Self-interest or sacrifice for others? Honesty, integrity and sincerity are the hallmarks of our motivation.

The experience of the beggar outside the ballroom proved to be a freeing experience for me. I felt that I had discovered the secret to charity. It begins in the heart. While motivation is rarely pure and not easily discerned, even for oneself, we are simply responsible for skillfully but sincerely sharing the need from our hearts. Manipulation ultimately fails.

It may be naive and unenforceable, but perhaps the guiding principle is: Ask for the right cause, the right way with the right attitude.

PS.  For those of you that have been accustomed to pictures in this blog, it appears my technical ineptitude has fouled up that function, so the great photos chosen for this piece will have to follow.

Parkinson's Disease Through Three-Dimensional Glasses

It was late afternoon in The Aragon, a well-established pub on Byres Road in the West End of Glasgow. While there were at least a half-dozen television screens in sight, all eyes were focused on a single wall-mounted screen at the end of the small, low-ceiling room. At first glance, the TV images seemed fuzzy, out of focus. I immediately thought this explained why each of the bar’s patrons seemed to be peering at the blurry images so intently. Then I wondered whether each had one too many pints of Scottish-brewed Tennent in an attempt to keep the 5000 year old brewery business alive and well in this land of brogue and kilts. But more careful observation disclosed what was really occurring. They were all attentively watching a game the modern version of which originated, circa 12th century, in Scotland: golf. And they were doing so through three-dimensional glasses.

The place was as quiet as a spectator gallery waiting for Tiger Woods to drain a 15-foot putt on the 18th hole. In fact, three patrons who evidenced a callous disregard for the game and were talking loudly in one corner were asked by the bar manager to leave the premises if they were not prepared to quiet down. It was the first time I recall being in a drinking establishment where silence was the rule rather than the exception. But this was the Ryder Cup, and the European team, cheered on by every person in the place, was desperately seeking to hang onto its tenuous lead over the Americans.

Donning a pair of the black-rimmed glasses I was astonished at what I was able to observe. There truly was another dimension that simply could not be seen without the glasses. It seemed so simple, and yet it changed the whole picture, making it dynamic and more alive. It was as dramatic as the 1927 transition must have been from silent movies with subtitled narrative to the "talkies".

Later, celebrating the one point win brought home to the European team by none other than Graeme McDowell (not Scottish, but Irish), I found myself asking the question, "What if people could see Parkinson's disease for what it really is simply by putting on a pair of special glasses?" Instead of being a two-dimensional disease comprised of old people frozen or shaking out of control, the true three-dimensional nature of the illness would be evident. The unexplored depth to this disease that even scientists are struggling to understand would become clear. However, it seems that no one has yet invented the PD dimensional glasses.

So how do we help people see beyond the fuzzy, hard-to-watch images of Parkinson's? How do we explain, without whining or soliciting pity, the full picture of what we face every day? Perhaps it is like the game of golf. It needs to be played with patience, perseverance, and one stroke at a time. There is no place to hide on a golf course. One way or another our strength of character in the face of our struggles will become evident, three-dimensional glasses or not.

Parkinson's Disease - A Bridge over the River Clyde

As the taxi driver maneuvered his way across the Arc (or the Squinty Bridge as it is called locally) over the River Clyde, entering the downtown area of Glasgow with Scotland Exhibition & Convention Centre in sight, I felt fearful and alone. I could not clearly remember why I had decided to attend the World Parkinson's Congress, and now wondered about the wisdom of doing so. I had no way of knowing that I was going to be changed over the next few days. Permanently.

It was Wednesday afternoon. I was exhausted, having traveled overnight from San Francisco to Vancouver to London Heathrow to Glasgow. That would not have been so tiring had I not just returned from Lithuania to Vancouver last Friday to participate in our law firm’s annual retreat from last Saturday to Tuesday aboard a cruise ship from Vancouver to San Francisco. To Europe and back twice in 2 weeks, with one night at home, seemed a little silly in retrospect. When asked why I was going to Glasgow, I would give the reason that I wanted to see people I had "met" over the Internet; people with Parkinson's. In some respects it was a like an Internet blind date. It suddenly seemed like a bad idea. How was I supposed to make this work, say, “Hi. I am the guy from Canada that writes a blog on PD. Remember me?”

But it was not very long after I entered the Congress venue that I recognized some of these people in flesh and blood (rather than computer generated .jpg images). In the few days that followed these men and women evolved from single dimensional flat screen cutouts to brothers and sisters in a family fighting a battle together. We came from different parts of the world, sometimes struggled with communication, but nonetheless understood each other in ways that words could not express. Some, like advance reconnaissance troops, were far ahead on the path that we walk in common. They struggled with the Parkinson's enemy in ways that caused us fear and admiration. You see Parkinson's disease attacks each of us in our family in a different way, at a different pace, with different consequences. Some it causes to shake and shudder, squirm and writhe, flailing about as if attacked by a swarm of bees or possessed by an insatiable itch. Others stiffen, statue-like and can barely move, threatening to topple over as if some sadistic prankster had nailed her shoes to the floor. Some can confidently run marathons while others carry canes and shuffle insecurely from place to place. Some portray an engaging smile while others stare blankly, unable to evidence any of the emotions imprisoned behind their PD mask. Most speak softly, even when speaking about issues of powerful importance. This one disease provides a grab bag of symptomatic surprises, a multiplicity of manifestations. It defies and confuses effective general definition, just as it has evaded definitive causation and cure.

Many of the 3000 conferees came to this Congress to hear of hope. Hope from the breakthroughs in science. Hope in the testing and treatment of symptoms. Hope for a cure. Hope from doctors and scientists and researchers. Hope from experiments and studies and learned papers. Hope that soon those of us wearying of the daily battle with Parkinson's disease would hear of a winnable war.

However, for me, I found hope in the eyes of those friends and “family” members sharing in the struggle, the day-to-day demands and frustrations, the uncertainty and unfulfilled dreams and expectations. They are my heroes of hope, my fellow warriors. Soldiers in the war against the tyranny of Parkinson's, fighting urgently to free those held captive behind enemy lines. These are the champions who give me strength to carry on.

So as the Congress ended with farewell tears and hugs and kisses, there was an open pledge to be there for one another, to fight on as bravely as possible. For one day, as difficult as this all is, we will look back to this time as one of great closeness, joined as we are in the common call for courage. And perhaps soon the Arc will become a circle; a cure, complete and permanent. A circle of friends with hopes fulfilled. Veterans of battles past who raise a glass to victory won.