Wednesday, January 26, 2011

The Art of Laughing in the Face of Adversity

“My sporting exploits extend about as far as some tail end batting for my local cricket team. I have a weakness for cheese, chocolate and red wine to the horror of my neurologist who visibly winces when I step on the scales. So I don’t run for buses let alone marathons. I swim like a fish (of the battered variety with chips). And as for cycling, the sight of me in Dayglo Lycra is enough to stop traffic. Definitely not for the squeamish!”

 That’s just a taste of my friend Jon’s writing. Humour, of the English variety – self-deprecating, well-written and insightful – is his forte born out of the irony of being a neuroscientist who earlier in his career researched Parkinson’s, only to be diagnosed with the disease in 2006.

Jon and I have become good friends. While that only occurred because we had this dreaded diagnosis in common, I am confident we will remain friends even without sharing “the good vibes”. We both love words and blogging. Jon shares his life and laughter in his blog, “Slice of Life”, found by clicking here. While our styles are different (being funny is NOT my gift), our common goal is to encourage others and, perhaps in the process, keep ourselves more positive. We both seek to avoid taking our common ailment, or ourselves, too seriously yet candidly share our current or anticipated challenges.
LOL, the ubiquitous acronym along with a smiley face emoticon, seems to have taken the place of actually laughing out loud or smiling like your face is fixed in that position. Nothing lightens the load like laughter. It cuts self-pity to shreds and leaves in its place a smile that cannot easily be erased. A sense of humour and the ability to see comedic sketches played out in the circumstances of life is a gift that needs to be nurtured. Often a belly laugh can push pain to the perimeter more effectively than any pills. But if you are like me you see the pathos of life much more easily than the amusing. So how do we avoid the downward spiral of seriousness in a world that can sometimes specialize in suffering?

Jon has published his side-splitting, real life scenarios in a book with the same title as his blog, “Slice of Life”. Bite-sized readings that prohibit a frown from forming on your face for hours make this a book that can be read anywhere, any time, even if you only have a few minutes. I urge you to consider buying it (my copy is already dog-eared and moist with tears of laughter). You can preview the book or buy online here. I am recommending this book not just because he is my friend, but also because he fills a void by using humour as a helpful strategy in fending off an otherwise formidable foe. Oh, and by the way…despite what some folks believe about the mercenary nature of lawyers, there is no commission, kickback or under the table compensation to me. A portion of the proceeds from Jon’s book goes to Parkinson’s research. Another plus!

Let me leave you laughing with another vignette from Jon’s book:

“Last Sunday I decided to nip out to buy a new laptop. For weeks I had been eyeing up a mini netbook with all the bells and whistles. Blutooth, wifi and goodness knows what else. By any standard, it was a mouthwatering bit of kit. I told my wife where I was going. “Oh, I’ll come too” said Claire casually. “Okay” I said “I didn’t know you were interested in computers”. An hour later we left Comet [store with everything from electronics to home appliances] with a Hotpoint WMF720 with coldwater feed and twin spin cycle.
Yes. A washing machine. Not a laptop.
The word “ambush” comes to mind.
“You’re very quiet” said Claire as we got back in the car. The vein on my temple was throbbing. We drove home in silence.
And the laptop?
I am sorry but “Wait and see what Santa brings you” does not cut the mustard. Why couldn’t Santa have brought the washing machine and let me buy the laptop, I’d like to know. If I had been a five year old I would have stamped my feet. Actually I did.
 This is a pattern repeated in thousands of households nationwide. I ask you – is there any more depressing sight than a husband gloomily traipsing around Curry’s or Dixons while his wife compares all 78 tumble dryers? After the first five machines, even the rictus smile of feigned interest on hubby’s face has faded. Another ten and he is casually shuffling toward the video cameras whilst remaining in earshot. After a further 20 dryers he has abandoned all pretense and is fast losing the will to live. Quarter of an hour later, the wife reaches a decision just as the husband finally reaches his own, coming down narrowly in favour of pills over a noose.”

Sunday, January 23, 2011

Unbroken - A Message and a Model

Parkinson's disease has been labeled as merciless suffering that requires courage, stamina and a will to fight against the odds. For some it requires enduring shaking and thrashing about that prevents writing, walking, speaking or even eating. Others experience stiffness to the point of total immobilization akin to a statute. Sometimes, add to that dark depression, anxiety, mind numbing insomnia, and a panoply of other painful, embarrassing and debilitating symptoms and you have a recipe for the demise of dignity; a potential victim in the making. PD can corrode the soul. Its power and presence are unrelenting and unforgiving. The battle against this cruel villain demands more from us each day, draining our reserves and bullying us beyond our willingness to fight back.

Many people with Parkinson's give up. Depleted and discouraged they are drained of hope and happiness. Smiles have disappeared behind a mask that imprisons laughter and any joy of living. Suicide, no longer just whispered in desperation, is promoted by some as the final answer. It is touted as the dignified exit strategy when the daily quashing of life's “quality” has irreparably defeated one’s will to live.
Facing the daunting prognosis of this soul-destroying disease, how can we fight on, defending our personhood and purpose while holding high the human spirit, unbroken?

Imagine you are a 19-year-old elite athlete near the pinnacle of human performance, a world-renowned Olympian with a future of great potential. And then,your meteoric rise to recognition literally crashes into the sea, leaving you adrift on the Pacific Ocean. You have no food, water for a few days and a fast fading hope of ever being found alive. Add sharks encircling your small rubber raft, unbearable heat beating your body, and no way to avoid the sun that scorches your salt-soaked skin until you are a mass of oozing boils and blisters. Friends and family give up searching and you are proclaimed dead. But miraculously you survive. After 47 days at sea drifting over 2000 miles you are found, delirious, near dead and half your former weight. However, your saviours are the enemy, feared for their inhuman treatment of those who fall into their hands. You are thrown into prison where every day for more than two years you are subjected to unthinkable cruelty, deprivation, torture, starvation, backbreaking labour and, perhaps worst of all, heart-crushing humiliation.

This is the true story of Louis Zamperini who, still alive at the age of 94, gives those of us who may be enduring difficulties a message and a model. Louis' life is chronicled in the best-selling book, “Unbroken: A World War II Story of Survival, Resilience and Redemption” (by author Lauren Hillenbrand, who suffers from debilitating chronic fatigue syndrome). The book’s frank message is that we are each in need of dignity, which springs from hope, determination and a will to persevere. With it we can prevail over the most painful and persistent difficulties. My favourite quote from this unforgettable read is:

“Without dignity, identity is erased. In its absence, men are defined not by themselves, but by their captors and the circumstances in which they are forced to live. … Dignity is as essential to human life as water, food, and oxygen. The stubborn retention of it, even in the face of extreme physical hardship, can hold a man’s soul in his body long past the point at which the body should have surrendered it.”

I believe that this remarkable book has forever strengthened my refusal to surrender to my seemingly indomitable captor, Parkinson’s disease. If, through his unimaginable suffering, Louis Zamperini’s spirit could remain unbroken, his dignity and identity in tact, then we can all strive to emulate him and cling to our own sense of purpose as we battle with the enemy, PD.

Thursday, January 20, 2011

5 Lessons Learned in 5 Years with Parkinson's Disease

It was 5 years ago today. On the morning of January 19, 2006 Renae and I walked out of the neurologist’s office at St. Paul’s Hospital with a diagnosis that changed my life. Nothing was noticeably different, but in fact everything was different. Try as I might to pretend otherwise, I knew it. My loving wife was stunned when as we exited the doctor's office I nonchalantly asked her, "Where should we have lunch before I get back to work?"  Inside I was trying to process the uncertainty of it all. I felt like a civilian who had just been conscripted to fight a war I did not understand. I had no idea what I would experience in the days, months and years ahead. I was afraid but did not know why because it was all so vague and alien to the point of immobilizing me on the inside, leaving me unable to process any of it. So I just continued on like nothing had happened that morning.

Five years have passed. The lightheaded days as a “newly diagnosed” PWP (person with Parkinson’s) have disappeared. My diagnosis is rarely “news” to anyone anymore. The disease has made its promised progress, slowly taking captive more of the normal functioning of my body each year. To some extent PD holds me as a prisoner of war, leaving my right side shaking most of the time and my muscles stiff and weak from the strain of it all. It wakes me in the middle of the night to punish me with sleep deprivation, leaving me rattled, anxious and craving rest. This disease is relentless, incessantly interfering with my daily functioning. When you most want to be free of its oppression it becomes obvious and omnipotent. My medications, jail keepers themselves, wrestle with PD for control, leaving me caught in the middle wondering who is the more dangerous taskmaster.

Despite the inexorable march of my enemy, it has far from defeated me. Its forward forces of self-pity and depression have not claimed a foothold, at least for now. For I have been the beneficiary of this invasion. I have been a student who has learned much from the tenacious teacher, Professor Parkinson.

These are just 5 of the lessons learned in my 5 years with Parkinson’s disease.

1. Weaknesses can make you stronger. The old Nietzsche saying, “What does not kill me makes me stronger” is almost right. PD can make me stronger. Being confronted with my own weakness and vulnerability can be a gift. I take life and health less for granted now. I have learned that time is a non-renewable resource to be cherished and “spent” with care and deliberation, but without spoiling the serendipitous moments.

2. Secrets take a lot of energy to keep hidden. I feared, and to some extent still do, that friends, colleagues, clients and others would shrink away from the disclosure of my secret. Few of us are comfortable with things we don’t understand. PD can be a scary and distracting disease to be around. I had always wanted to be transparent about who I was. But I knew that disclosure of my dearth of dopamine could risk rejection, so I hid it most of the time. This was exhausting and, while the disease does not define me, it is a part of who I am. I realized I could not be accepted for who I was when I took great pains to hide the ‘Parky’ part. My secret is now out and the risk of rejection remains largely unrealized.

3. Life’s uncertainties can produce focused living. What did I want out of life while I had the ability to pursue it? Sure, Parkinson’s might take 20 or more years to immobilize me, and a cure might be found before then, but how could I be more intentional in living the “good” years I have right now? My ‘bucket list’ and New Years Resolutions have become a focal point for thinking this through; a roadmap and itinerary for adventure.

4. Acceptance and affirmation can come from inadequacy and insecurity. My initial response to the diagnosis was a type of denial. “This disease won’t affect me much,” I said self-deceptively. But soon the false bravado lost its ‘oomph’ and a loss of confidence and sense of inadequacy began to creep in. Sometimes the PD questioned my worth as a professional and a person, my capability and capacity for contribution. It was through the support of those reading this blog and the help of many of my fellow PWP that I began to see through Parkinson's propaganda of self-doubt.

5. Obstacles present opportunities to overcome. I have always enjoyed challenges. I get bored with repetition. PD is, and will likely remain, a giant lifelong challenge for me. But with help from family and friends, and the presence of my faith, I am up for taking it on. After all, the alternative is to just quit. I am committed to defeat the enemy by living life to the fullest. If my opponent proves too strong for me one day, then I have vowed to go down fighting. My goal is to encourage others to do likewise and win this war one day at a time.

5 years, 5 lessons, and lots more to come.

Monday, January 17, 2011

Parkinson's Disease and the Loss of Privileges

Only after waiting 30 minutes in line and then completing the paper work and interminable blind initialing of forms at the airport car rental counter was I told what kind of car we would drive. “What is an “Accent”?” I inquired. The young Alamo "manager" gave us neither a stirring description nor reassuring endorsement but simply stated, "It will get you from place to place." Expecting her to follow this by happily offering to rent us an upgrade at a very modest price increase, I cut her off. "That will be fine", I said, and dragged our suitcases outside to seek out stall #46. I hoped for something foreign, stylish and sporty. Seven rows up on the right we found the forlorn looking thing. I knew better than to expect our “Accent” to be luxurious. But I had underestimated the overstatement of its name. It was instantly clear that the marketing of this vehicle was not based on sleek design, aggressive lines or sparkling colour choice. One glance at the small, sea foam green Korean automobile and I was left with one inescapable conclusion; "ECONOMY" was its sole selling feature.

Despite the 4-door attribute of our “Accent” I was relieved that there were only two of us traveling. The trunk was slightly larger than the glove box in most standard size vehicles and accommodated only one suitcase, with the rest of the luggage occupying the backseat. Trying to fit four small people with overnight carry-on would have given the appearance of an overstuffed cargo vehicle. Having no keyless entry system I struggled with the key in the driver’s door and discovered immediately how my Parkinson’s disease had increased my dependence on electric locks. Finally getting the door open and reaching across the front seats to unlock the passenger door for Renae, I was struck by the disappointingly military-drab interior. I continued to wonder how Hyundai had chosen the name for this modern definition of "non-descript".

Challenged as I am by any repetitive movements, rolling down the manual windows to cool off the vehicle proved daunting. I felt a pang of guilt as I realized how I had taken for granted the electric locks, windows and seats of my car at home. “A little humility is a good thing” I said to Renae as we drove out of the parking lot onto the 50 mile per hour roadway. Despite the gas pedal being pressed to the floor in earnest with the motor emitting a high-pitched whine I was certain would deafen dogs for miles around, our rental refused to accelerate. It was as if the four-wheeled glorified golf cart was waiting for some other command. I checked the emergency brake and the two-speed gearshift, but nothing seemed awry. Then, slowly, our speed began to increase so that the SUV’s and trucks were not passing us at quite such a pace, their drivers glancing at us with unmistakable disdainful sneers. I reached to set the cruise control to rest my tremour-ridden leg, but found none. “This is going to be a challenge,” I muttered, feeling stressed and fatigued after traveling only a few miles. I was finding more things to complain about with each mile that passed.

Did I mention we were in Palm Springs, where it seemed that every second vehicle that passed me cost the same as a modest home in most suburbs? If there ever was an image of humility, I was riding in it. I felt like Jed Clampett, Jethro, Elly Mae and Granny driving into town as the “Beverly Hillbillies’.

Isn’t it amazing how quickly we get accustomed to a lifestyle? We complain if we are not accorded "proper" treatment. We are secretly prideful of our “gold” credit card, “elite” travel standing and “preferred” customer ranking. We feel cheated and become embarrassed when we slip a notch or two in apparent status, seeking to maintain ourselves in “the style and manner to which we have become accustomed”. Before PD paraded into my life, I was nearly oblivious to my pursuit of that to which I felt subconsciously entitled. Now, I feel like I am beginning to understand a new humility. Just like the sidelong looks our less-than-attractive rental car gets, people sometimes notice that my shaky right hand cannot take notes and some days my stiff right leg cannot stop bouncing. Both my rental and I need more patience than others and do not function with quite the speed and efficiency of some. And while it takes some humility to put up with our frustrating functioning, perhaps we learn necessary lessons through it all. I hope to keep the "accent" on the positive.

           A people that values its privileges above its principles soon loses both.
Dwight D. Eisenhower

Wednesday, January 12, 2011

Time is Running Out for a Small Town Hero

Vermillion, South Dakota has a population of 10,000. It could be the set for "Back to the Future".  The pride of this small town, tucked away in the southeast corner of South Dakota, is Larry Smith. Despite the non-descript name, he is a hero. He owns a bakery in town, Mr. Smith’s Bakery CafĂ©, known in Vermilion for its salted baguettes. Larry was a police chief in Hamden, Connecticut until 1999, but that is not the reason he is a hero. He has Parkinson's disease, having been diagnosed almost 20 years ago when he was 42, but he is not one to accept his fate without a fight. His motto: “If you love life, you will fight for it!”
This June, Larry is going to cycle approximately 280 miles across South Dakota. Now Lance Armstrong could do that in a day without working up a sweat. But for Larry, who has trouble walking across the room, talking or staying still, it will take everything he has over 5 days.
If this feat were a Parkinson’s fundraising event, Larry's efforts would doubtlessly be rewarded. But it is more. You see there is a group of well-known independent documentary filmmakers who want to profile this small town hero to show what living with Parkinson's is all about. PD has touched each of them. It is hoped that the movie will lift the awareness of this disease above its current characterization as "the shaking that old people get". As a bonus, it will inevitably encourage those of us who face the challenge of PD every day. Encouragement is what Positively Parkinson’s is all about.

I have never pitched any particular PD organization, with the exception of my support of Wobbly Williams in Scotland, but I believe that this is a project worth supporting financially. Certainly I will be. Pledges totaling $50,000 "earnest money" are needed no later than noon Vancouver time on February 2, 2011 in order to get the costs of producing the film underwritten. If you are willing and able, watch the video clip here. Even if you are not able to make a tax-deductible (U.S. only) donation, the story of this small town hero is inspiring and I recommend the video clip anyway. The world seems short of heroes today.

Saturday, January 8, 2011

Is it Time to Lower Our Standards?

If at first you don’t succeed…redefine success and lower your standards?

2011. Seven days old and already I am tempted to forgo a New Year’s commitment I made. At first I thought it was the Parkinson's disease talking. "You did not get enough sleep last night. Forget getting up to go to the gym. You can do it tomorrow." But then I realized that “making excuses” is just human nature. We all like high standards, as long as they apply to other people or are easily achievable by us. As Michelangelo warned, "The greater danger for most of us lies not in setting our aim too high and falling short; but in setting our aim too low, and achieving our mark.”
Not only does it seem that individuals are "lowering the bar", the Canadian government seems to be doing likewise. Despite epidemic levels of obesity, the government is releasing 'activity guidelines’ on January 24th that will lower minimum exercise targets. Apparently, this is to reflect what the rest of the world is doing and "encourage" Canadians to exercise more.

Struggling, as I have been, with failing to meet my own expectations, I know how it feels to face the frustration of lowering the bar. Inevitably, Parkinson's disease will progressively demand a lowering of my expectations when it comes to physical, and even some intellectual, performance levels. How can I recognize reality while avoiding the pitfall of achieving a mark set too low, as identified by Michelangelo?

After some initial thought, I asked myself the following questions:

1. Who should set my standards? It is hard to imagine anyone answering this question other than by defiantly saying, "I set my own standards”, like Frank Sinatra’s, "I Did It My Way". Of course, each of us choose the standards by which to measure our performance, but I believe the best choices are made on the basis of objective standards. Even the best athletes, musicians and performers of all types have coaches.

2. What are the best standards for me? Before setting a benchmark for any achievement, it is necessary for me to know my own level of performance. I may be able to complete a 10 km/6.1 miles, "fun run", but the ‘fun’ would be out of that run before I was halfway done. The reason lies in the fact that my current attainable distance/pace on a treadmill is 2.5 miles in 30 minutes. Sustainable success depends on setting standards measured incrementally, in "baby steps", as so annoyingly put by the obsessive compulsive Bob’s doctor in the 1991 comedy, "What About Bob?"
3. When should my standards be set? Personally, I need to be challenged all the time. If challenges are not readily available, I will make them up. Doing one more 'crunch' sit up or running one more kilometre. It seems to me that we are at our best when we continually adopt challenging standards. Personal growth means a stretching beyond our apparent limitations. Everyday is a new day.

4. How should my standards be set? To me this is where I get myself into the most trouble. The standards I set in secret are likely to be unhealthy for me. Like most people I need encouragement from others, whether I am in the process of achievement or failure. I am prone to be rash in setting goals, reaching too far, and expecting too much from others and myself. I have found that this can be moderated by being more open and accountable about the standards I set. Like an expedition, greater care must be taken when the goal or destination is well out of reach and over the horizon.
5. When should I let myself off the hook? Failure teaches me more than does success. Until I learn to deal with failure I am unlikely to be able to deal with success. So if the standards are set wisely, I can view any failure as temporary, a step in the process. Consider the goal. Prepare to achieve it. Give it your best. Learn from failure. Start the process over. The answer for me is to allow for failure as a necessary part of the process leading to success.

When my Parkinson's disease and its debilitation get me down, it is because today has become a destination. I forget that it is all part of a journey called “Life”. Failure today does not have to translate into failure all year long. It is not so much a question of lowering the bar, but rather continuing to do one's best.

Monday, January 3, 2011

Why New Year Resolutions are Necessary Failures for People With Parkinson's Disease and Others

As with many others, I struggle with making New Year resolutions. It was not always so. At one time, pre-Parkinson's disease, I was very organized about planning what I wanted to accomplish each year. But lately I have joined the ranks of those who shun the practice of making promises as the calendar flips a digit (so to speak). Despite the fact that people with Parkinson’s have a hard time predicting how the degenerative disease will limit their abilities, that is not the reason. I decided to come clean on my own reasons, to the extent that I have discerned my own motivation, or lack thereof. I am going one step further. I will bare all (well, not all) and post some of my resolutions here for all to see, for reasons I will set out below.

New Year resolutions are typically worthwhile goals. Take for instance U.S. President Obama's resolution last year to stop smoking. Yet many, if not most, of us either forego the opportunity or engage in setting goals knowing full well we will fail. Some people even scoff at the tradition. Most do not announce their personal resolutions to anyone. Despite my usual positive outlook, I too find it difficult these days to commit to a list of annual resolutions. Why? One reason might be that the statistics are against you. About 50% of people polled made resolutions last year, and yet only 25% achieved success.
Some might say it is just laziness. However, let me suggest that fear might be the real enemy of resolve. Laziness, as the entrepreneur, blogging guru, Seth Godin, said, is fear. We (that pronoun includes me) seem to fear commitment to change, regardless of how beneficial that change might be. We fear failure and our own lack of discipline necessary to achieve success. We fear that the stark reality of our lack of desire to change will be made known, that our frail humanity will be exposed for what it is. We fear the judgment (express, implicit or imagined) of others or ourselves. Fear is the foil of good intentions, thus discarding them like cobblestones with which the road to hell, or at least one’s unrealized potential, is often paved.
I was reminded by the January 1 passing of a dear, faithful reader of this blog that life is precious and dare not be wasted. Whatever your spiritual views may be, we all somehow know that life is to be cherished not squandered. We recognize that we are gifted with a few years of living in order to make the best of them. Our clocks point out the minutes we have used up. Our hearts beat out the rhythm of a song that will end some day. Each breath signals another moment’s passing. We understand all that and yet we fear living intentionally. We avoid full commitment to a plan that would see our time and talents spent in a worthy manner. We so often choose to live randomly except for the hard-wired stuff like sleeping and eating.

We need to have the courage of our convictions and throw off cowardice, the offspring of fear. We must commit to those dreams that dwell in hidden places within our hearts. We have to recognize our need for strength and encouragement beyond ourselves. We would best acknowledge we are prone to fail, give up or lose our resolve so that we might recognize our need for the resources that friends and family can provide. I cannot help but believe that if we all made at least one New Year resolution, and shared that with someone who was committed to helping each of us to accomplish that goal, we would all be happier and more likely to live intentionally.
So here goes my experiment. Sharing my New Year resolutions (or at least some of them) with you who may read this, with the belief that in doing so I can more likely achieve them.

1. I will post written encouragement on Positively Parkinson’s at least two times each week during 2011.
2. I will prepare the necessary manuscript material for a Positively Parkinson’s book proposal to be considered for publication, and submit that material to publishers before the end of 2011.
3. I will exercise at least 3 times a week to offset the stiffness and inflexibility resulting from my Parkinson’s disease.
4. I will spend at least 15 minutes each day in quietness.

Now all I need is discipline, encouragement and the support of others to make up for my human fallibility. What about you? Especially those who face a future threatened by PD or some other challenge, what will you commit to? Despite the odds, are you prepared to commit out loud to a New Year resolution? As Ralph Waldo Emerson said, “Our greatest glory is not in never failing, but in rising up every time we fail.”