Get Out Of the Shower!

The water pelts down from the showerhead and I stick my hand into the spray, testing the temperature. It must be hot. Not warm. But almost unbearably hot. Stepping into the tiled shower stall I face away from the showerhead. The steam begins to rise and float out of the shower and fills the bathroom, condensing on the mirrors and windows, starting from the ceiling and drifting down. I close my eyes. 

The morning shower ritual feels like part massage, part sauna and part cleansing. It it is a prayer that washes away the nightmares of my troubled sleep. It re-calibrates my mind. At first there are creative, untethered, and even unimaginable thoughts that drift undisciplined through my mind. I surrender to the muse as words begin to form around my thoughts. Sometimes music drifts among the words.

But, too soon, the invasion of the day’s schedule and persistent priorities bring focus to ideas. Pragmatism begins to sweep away the secret sense of well-being. I know I cannot win this tug-of-war. It ends with silent resentment as the water stops, and cold air creeps towards me, across the floor, over my feet and up my legs. Resigned, I reach for the towel to dry my rapidly cooling body.

And so the day begins with the sacrament of the shower.

This morning I fought harder in the shower before I submitted to the demands of the day. Somehow, it being my 67^th birthday, I felt a sense of entitlement, reward, and privilege. The luxury of those extra minutes lingering in the shower before stepping into the cold air was like a gift to myself. But I could not succumb to this temptation for long. I don’t sit down in a shower.  I may have to at some time in my life but for now, it just does not feel right.

Luxurious as it is, my shower is transition. Just as the dawn is the transition from night to day. It has a natural rhythm.

The symptoms of Parkinson’s disease constitute a harsh reality. Sometimes we who battle this disease seek to escape the pain, the frustration and the fatigue. A few glasses of wine, indulging ourselves, or simply giving in rather than fighting back. Understandable. But we cannot stay in the shower.

As I begin my 67^th year, I know that the temptation to stay longer in the shower will increase. The inner struggle to stay where it is safe and warm will grow. Still, reality and purpose only exist outside the shower.

"We are what we repeatedly do. Excellence, then, is not an act, but a habit." Aristotle.

Help! I am an 18-Year-Old Stuck in a 58-Year-Old Body With Parkinson's Disease

There was no dream too big. No limit to the adventures ahead. The sun was shining, the flowers blooming, and love was in the air. Life could only get better and better. At 18 years old, the world was literally my oyster, seeded with not just one pearl but an inexhaustible supply. I wanted them all.

Growing old or suffering some sickness were too far away to even imagine; a highly questionable long-term weather forecast that seemed irrelevant. We were still riding the waves of the ideal 1960s, when we, the flower-powered youth, commandeered the wheelhouse of culture, demanding change and chanting, "do not trust anyone over 30" (David Weinberger, University of California Berkeley, 1964).

40 years passed. Quickly! Those years were filled with pursuing dreams; sometimes realizing them with jubilation, and sometimes watching them die a slow, discouraging death. Most of us have now come to realize that, in our rebellion against authority, one thing we had forgotten was to "respect our elders". In fact, we had forgotten our elders altogether. The "old folks’ homes" were nonexistent to most of us back then. Parkinson's and other "old people’s diseases" were virtually unknown to young people. Of course, all that is changing. Now, when cursing the dizzying speed with which technology changes, we may whisper, at least to ourselves, "do not trust anyone under 30". We cannot seem to keep up to them. We are tiring of the panicked pace. But we do not know how to slow down and give up the control we have maintained for the past four decades. In fact, we may even fear that the youth of today will follow our example and relegate us to somewhat more upscale "old folks’ homes" to be left alone to question the quality and powerlessness of the lives we have left.

For many of us in this bloated demographic bubble called ‘baby boomers’, we have begun to realize the ironic comparison between the heady optimism of our teenage years, and the over-promising, under-delivering expectations we are sold on infomercials guaranteeing painlessness, performance and prosperity to defeat our skepticism. Somehow, to put our hope in either the drug-induced dreams of yesterday, or the pill-popping promises of tomorrow, seems hopelessly unrealistic.

Perhaps foolishly, I am still 18 at heart. But I seem to be indentured to a body that is insistent on teaching me about pain and imperfection, aging and disability. Despite these lessons, there remains in me, as there does in many other baby boomers, an enthusiasm, a curiosity, a thirst for learning and a heart that wants to see the world become a better place. But the 18-year-old heart has matured. While optimism may be more guarded, I cannot give up the belief that our generation can make a difference, both for ourselves and the generations to follow.

It is an exciting time to reclaim the best things about our youth: our communication of passion, our ability to understand power and influence, our willingness to work together despite differences. But instead of being distracted by protests, parties, pot and politics, we have an opportunity to use 40 years’ worth of skills and resources to focus on the needs of those who face, or will face, chronic and degenerative disease. That is more than a distant dream. It is attainable.

What Do Curling and Parkinson's Disease Have in Common?

It is such a strange contest. Men and women approach, point at a distant target, and then launch themselves onto a sheet of ice from a "hack" in order to throw 40 pound "stones", sometimes called the "hammer", at a "house" located some 120 feet away, using aggressive phrases such as, "take out", and "guard". The players involved do not necessarily look like typical athletes. It could not be concluded that the best players were the best conditioned. They wear little in the way of special garb or protective gear because injury is rare.

Such is the game of curling, a permanent Olympic sport since 1998. It is a game of oddities, especially when compared with the thrills, spills, speed and stamina of other Olympic competitions. In fact, some would argue it has no place on the medal podium reserved for those that evidence unquestionable athletic prowess. Despite any similarities, it is very different than shuffleboard. It has been compared to horseshoes and golf, and also nicknamed "chess on ice". Finesse, skill and strategy combine in competition to form this highly challenging game played in winter climates the world around. Although the Scottish inventors of the game are still tough competition, Canadians have become dominant adversaries in this poorly understood and often derided sport.

Strange as it may seem in a country, and city, hooked on hockey, curling was the game I most wanted to see at the Olympics currently being held in Vancouver. This morning I took the risk of heading to the curling venue ticketless, praying for a friendly and desperate scalper. My prayers were answered by the first gentleman I met as he held up a ticket for a well-placed seat and said, "$80 and it is yours". Given the modest $15 premium over face value, a small price to pay for having left my decision to the last minute, and the fact that the place was sold out, I thought it was a bargain. In fact, this was a bargain when compared with any of the other Olympic sports where tickets ranged from $150 up to many thousands of dollars. The value is especially evident when you realize that you could watch four curling matches concurrently, with a good view of each.

The game of curling is easily distinguishable from the other Olympic competitions in a number of ways. Some would even call it the ugly duckling of the Olympics. First, it is the slowest paced game, involving no one traveling at a speed faster than a brisk walk, albeit on ice. Movement on the ice surface is comprised of shuffles and a brief sliding on one foot, sometimes using a long handled brush for support or "sweeping" none of which are measured for technical merit nor artistry. It is played on the smallest surface of all other winter sports. As long as you have reasonable strength, a deft touch and excellent eyesight, and of course a lot of skill and many years practice, there is nothing to preclude you from being the best in the world. It is not unusual to find among each country’s 4 member teams the oldest Olympians competing (this year, the Canadian, Carolyn Darbyshire at the age of 46)

I love watching curling. Mostly because it represents an enjoyable chapter in my youth, it also reflects pride in my family members, given that my nephews, Brad and Ryan Kuhn, were Canadian Junior Champions, and then World Junior Champions, in 2000. But I love the game because it is an oddball in the world of sports. It reminds me of Parkinson's disease. Just as the sport is often misunderstood, so it is with PD. Just as the disease involves a small team committed to a common strategy, each member utilizing their best efforts with their unique skill sets, so too does Parkinson's. It is a slow game, but nonetheless may require you to dig down deep and maintain an attitude of courage over a series of battles where the opponent wants nothing more than to take you out of play. Any of us could relate to someone on a curling team. They are everyday folk, just like the people with Parkinson's. Perhaps we could learn something from these Olympians with their camaraderie, commitment, consistency and caring to do their very best.

In Praise of Weakness

On the fourth of a series of four double axels, Kurt Browning, the superstar figure skater, fell to the ice, spoiling his otherwise perfect display of athletic artistry. The crowd in the arena drew a collective breath as he bounced back onto his feet, regained his composure and skated through the remainder of his routine. But his smile was not quite as carefree as it had been earlier in the evening's show.

He was not the only one to fall in the filmed-for-television premiere of "Holiday Festival on Ice". Other stars, like double Olympic gold medalist, Katia Gordeeva, missed a jump as well. Seeing any performer stumble evokes a reaction. But when world and Olympic champion skaters fall the scene leaves you feeling anxious and tender toward them. Your heart goes out to them. "I know how you must feel" you whisper to yourself. All that skill, hours of practice, fighting through hardships and challenges, only to fall when it counts, in the final analysis, the grande finale. “Disappointed” is not a sufficient descriptor. Shaken, self-doubting, crushed or even devastated, may be better. We have all been there.

The humanity of each star who had a flawed performance became even more evident when the audience was invited to stay for the retakes that were deemed necessary for taping of the television show. Kurt managed to pull off the same three spinning jumps but noticeably injured a muscle on the fourth jump, causing the 43 year old Canadian ice star to limp off, shaking his head, frustrated with what his body told him. There was no disdain for the failures the skaters experienced. No faultfinding or blaming. Instead, it was a perfect display of how to handle our human frailty, our weakness.

"Weakness" is not an attractive word. But there can be depth in the damaged soul, breadth in the battered body, and toughness in the tested and troubled mind. Did you ever notice that we are all drawn to share our struggles, our failures and weaknesses, with those who share theirs? It seems as if we are not really attracted to the famous, the flawless and the faultless when we feel bothered, burdened, or buried.

No one aspires to fail or evidence weakness, but to deny its existence is to allow it to breed no benefits. Even though we avoid our own vulnerability, we see the value of openness in others. We often feel most human and alive when life squeezes us longer or harder than we would like. In that sense, “No pain, no gain”. After all, name one person who has impacted the world for good that has not been brought low and tasted the bitterness of pain, sadness or loss. Greatness has little use for the spoiled and self-satisfied among us. They are pretenders, posers, too 'perfect' to lead us up out of hurt and rejection. It seems we cannot rise up unless we are first bought down. Indeed, our true heroes are chosen from the humble and homely.  They are deeply admired and loved because they show us real beauty and how the basest "beast" can become the best and most "beautiful" of our race. Take last year's mega-hit "Slumdog Millionaire", or almost any classic story.

Parkinson's disease too can mold men and women into models of human perseverance. Sharing our weakness can draw others out, allowing them to be vulnerable; who they really are. Author, Dr. James Houston once said, “True friendship is based on the mutual sharing of weakness”.

Weakness compels us to realize our need for others, allows us to be cared for; be loved. No one in a suit of armor touches real life. It is the bruised and battered that that draw us like a vacuum and can give us courage to man the battlements of our own often beleaguered lives.

Out of the crucible comes wisdom. Raw intelligence can often be just a braggart or a thief masquerading as the stuff of life. But it is a beggar who finds bread who is driven to share the source with other hungry hearts; while the proud and powerful disdain the weaknesses.

Parkinson’s or flawed performances, we can all benefit by sharing our human weaknesses, using them to learn how to live with and stay fighting those we cannot yet conquer.

Winston, War and Parkinson's

Exhausted from too many late nights at work, and having grabbed an insufficient four hours sleep before we dashed off to make the early morning flight from Vancouver to Miami, I slumped into window seat 13F, expecting to be asleep before we left the ground.  We had snagged the emergency exit aisle with the extra legroom and "reclining" seats, ensuring some ability to snooze.  As we were settling in I noticed that the movie to be played was "Into the Storm".  I had never heard of the 2009 Emmy-winning TV miniseries.  But something held my sagging eyelids open as I saw the rotund, cigar-chomping images of Winston Churchill.  I became totally engrossed as soon as I had my headphones plugged in and began hearing the fighting words of that savior of England. Those words inspired me as I began to see the analogy of Parkinson's as a war to be waged against an ever-fiercer force.

Churchill was a grand, if somewhat pompous, figure who strode confidently into the right place at the right time.  But at the time, few who knew the man considered him much more than a populist orator, an opportunist from a privileged background who succeeded to the office of British Prime Minister in the wake of Neville Chamberlain's retreat. Yet, despite his significant human failings (he smoked, drank and ate too much), he evidenced such courage, or brash arrogance, that he convinced or cajoled his nation and its leaders to not surrender to Hitler's Nazi bullies, but fight on despite formidable, even insurmountable, odds.  His determination and single-mindedness were legendary and critical to ultimate victory.  But, curiously, he was not a man for easy times, as his 1945 electoral defeat, after winning the war, convincingly evidenced.  He was born to fight.  The war made Churchill, as much as he made war.  It called out his greatness, his best.

I am inspired by Churchill's commitment to fight the enemy, regardless of his self-doubt and how futile war must have seemed.  I concluded at the end of that movie that he would be an inner voice for me, barking out encouragement or demanding improvement in the battle against PD.  Consider what he said and apply these statements to your enemy:

"Never give in - never, never, never, never...never give in... Never yield to force; never yield to the apparently overwhelming might of the enemy."

"Success is not final, failure is not fatal: it is the courage to continue that counts."

"Courage is the first of human qualities because it is the quality which guarantees all others."

"Sure I am of this, that you have only to endure to conquer."

"It is a mistake to look too far ahead. Only one link of the chain of destiny can be handled at a time."

"We shall draw from the heart of suffering itself the means of inspiration and survival."

Now ours is not a 5-year war with Parkinson's disease. Nor do we live in an age when fighting is portrayed positively.  We, of our generation, have grown up believing that all problems of conflict can be solved without sacrifice or saviors, hurt or harm. Such thinking in 1940 almost snuffed out the candle of democracy. But whatever our political persuasions, when it comes to PD we cannot negotiate.  Appeasement is not a strategic option.  We must battle its ravages until it is defeated. No wonder we feel fatigued from time to time, for it is a fierce fight.

We can be inspired by others who go to war against this daunting foe.  Like Michael J. Fox, fellow Canadian and crusader for a cure and the cash to pursue it, or Muhammad Ali, who, once as dauntless and ego-expressive as Churchill, does not hide in shame, or the hundreds who seek a better world for themselves and those who wake each day to face the enemy.  But even Churchill did not stand alone.  He has his Clementine, who soldiered on with equal bravery.  So too are there those today who prop up those trembling and stiffened hands, such as Fox's Tracy Pollan, and Ali's Yolanda.  I am reminded of my own bride of 35 years and the Churchill quote that certainly resonates for me.  Winston said, "My most brilliant achievement was my ability to be able to persuade my wife to marry me."

In times of war we need heroes.  Parkinson's is no exception.  We need inspiration and encouragement.  Maybe you know such a person who will help you to never give in.  Maybe you can be a soldier rather than a caualty.  It will take relentless, steely-eyed commitment.  But as Churchill said. "In war: resolution".

82

That is how old my Dad would have been today. We still mourn the loss of him on February 13 of this year. But I continue to be inspired by him, and learn from his example.

He had Parkinson's disease. It was not what caused his death, as he had fought the PD opponent since his early seventies. It was Dementia with Lewy Bodies (DLB), a particular ugly form of dementia, that took his life. Although not commonly known, this mind-robbing disease is second only to Alzheimer's. And for some unknown reason it often haunts those already grappling with PD.

As a member of the "strong, silent type" generation, my father struggled with the idea of relying on others. Although he had only a Grade 8 education, he was intelligent, fiercely independent, frugal and very hardworking. The picture of my young father betrays some of these characteristics. During my growing up years I spent very little one-on-one time with my Dad. This was partly because we both tended to be busy. However, by far the larger part was that Dad was not particularly communicative, and least of all at a deep interpersonal level. We were both awkward when there was just the two of us. But we did spend a week together just after he began showing signs of serious PD, although neither of us had that label then. We all thought Dad's shaking was Essential Tremor, which he had experienced for some time. Ironically, I was diagnosed with this mysterious family trait one year before my verdict was changed to PD.

Quite contrary to my Dad's character, he and I took a cruise to Alaska. This was a last-minute idea that came to me in June, 2001 when a trial I had booked settled, leaving me with an unheard of two week window in my calendar.

Because he was not the warm and fuzzy type, and would rather work than sped idle time chit-chatting, I knew the idea of spending 24/7 with my Dad would test not only my conversational skills, but also my emotional intelligence quotient. But as I was approaching my 50th birthday, it dawned on me that I would not have my Dad around indefinitely, and I had better devise some means to spend time with him in the near future. Rather than run the risk of having him tell me the reasons why he would not be able to go (such as his garden, odd jobs, money or Mom being left alone), I conspired with my Mom to set a trap. We decided that I would simply book a cruise. So I phoned him and told him I had purchased the tickets and he needed to pack up and be ready in a few days. I am sure he was less than enthusiastic, and more than a little scared, but I think he was also pleased that his oldest son would choose to spend time with just him, something I knew he had not experienced with his own father.

It was not the best father/son time imaginable, but I will always cherish the memory. Not only were we roommates, and all that entails, we shared every meal together, played innumerable games of crib, went sightseeing and had a few relatively intimate talks. This also proved to be an excellent opportunity to learn some lessons I had no idea I would need to learn. I saw through his eyes how it must have felt to be watched by our 6 gracious table mates as his trembling hands sought to cut his prime rib, fork peas into his mouth, or raise a cup of coffee to his lips. All of these were embarrassing for him, and painful to watch because of how it affected him. At the time I found it odd that he would prefer staying in our cabin to play Cribbage together rather than venture out into the public to join in with shipboard activities.

But despite his age and then apparent physical challenges, he seemed ready to try things I suggested, as if knowing this opportunity would not come again. While we were in Juneau we went for a walk around the city and came upon a bicycle rental shop. On a whim, I convinced Dad that it might be fun to see the city on two wheels. He agreed, despite not having been on a bike for many years, and we set off. Things we thought seemed close on the map were a fair distance away and we ended up pedaling more than 25 miles that day. He never complained even when we had to sprint to make it back to the ship on time, although he lagged behind a little and required a nap before supper. For a time I fogot my father's age and condition. While I now know it must have been exhausting, seeing his unrelenting fighting spirit, and the extraordinary effort it must have required, gave me great pride in my Dad. He was more of a hero to me in his failing health than he had been in those early years when boys so often idolize their fathers.

Now, looking back, I find myself asking several questions that find their genesis in my Father's fight with PD. The first one I will comment on now, and the second one (what about the genetic bread crumbs I might follow) later.

How do I avoid (or deal with) being embarrassed and uncomfortable when my PD symptoms take over and threaten to Shanghai my social agenda?

I continue to process this, which can be especially difficult in large gatherings with people I don't know well. But it is my conviction that I must be, or become, comfortable with who I am, "warts and all". If I can accept myself, with all my limitations, I am more likely to be accepted comfortably by others, without me hiding or disguising my symptoms. To say it another way; I cannot expect others to feel comfortable around me if I am not comfortable with me. I might add for those who find themselves around those of us who evidence some disease or disability that the reverse is also true. The more comfortable you are with us, the more comfortable we will be with ourselves.

I am still learning to not be embarrassed about my times of uncontrollable tremors and others symptoms. And I expect that this will continue as the PD presents a moving target. But my Dad's example of pedaling many miles with such determination lives in my heart continually.