Hope Against Hope: I Believe

When one door of happiness closes, another opens; but often we look so long at the closed door that we do not see the one which has been opened for us.  Helen Keller

"The thrill of victory, the agony of defeat" is a phrase once used by a particular television network for Olympic competition. Of course, there is much more potential for losing a competition in the Olympics, than there is for winning. So, is it the potential "thrill" that enables athletes to endure the likely "agony". I think not. Anyone who has experienced the "thrill" knows that it is neither cheap nor shallow. And cling to it as you might, it inevitably will be fleeting. Alternatively, the "thrill" could represent the apex of personal experience, never to be repeated, and defining the life that follows, for better or for worse. There is a current phrase, chosen by the Canadian Olympic promotional pundits, that seems to say it all: "I Believe". That two-word phrase encapsulates both the aspirations and commitment of competitors seeking that thrilling victory on the world stage. But perhaps more importantly, it is the mantra of those spirited Parkinson's warriors confronting the agony of the constant battle with an enemy that seeks to defeat them at every level. We must believe! It is at the core of every worthwhile human endeavor. It is the essence of the human spirit. We must have hope!

Of course there is controversy. Some, including Margo MacDonald, the Scottish parliamentarian, also a person with Parkinson's, is sponsoring an “End of Life Care Bill” to facilitate assisted suicide when hopelessness takes over. Given the horror of PD, and other more devastating afflictions, I am surprised that there is not more suicide in the world. But there is an explanation for the uneasy response to hopelessness.

Despite views to the contrary, I believe there is something irrepressible that lives deep within us, something that sees the distant light in even the darkest night. It seems to me that Alexander Pope was right when he wrote in “An Essay on Man”, "Hope springs eternal in the human breast". Hope, it seems to me, falls outside the simplistic rubric and theory of cosmic chemical evolution. Is it possible to live without hope? Surely Dante was right when he labeled hell as a hopeless existence, and conversely, hopelessness is a kind of hell. But who has no hope? As Ecclesiastes 9:4 states, "anyone who is among the living has hope".

So, on what are you pinning your hopes? Why can you say" I believe"?

For most of us facing a frightening future of physical, and possibly mental, decline due to disease, the answer to that question may be in breakthroughs in medical science, increasingly effective medication, or even perfected means of surgical intervention. In the world of Parkinson's, one current great hope is deep brain stimulation (DBS). DBS involves clamping your head in a stainless steel box-frame so that it cannot move for 6 hours or more while a neurosurgeon drills a hole or two in your head, through which an electronic battery-powered probe is semi-permanently placed to touch the near center of your brain. Once installed this brain-based pacemaker is connected by a wire running like a vein from the electrode beneath your scalp, under the skin of your neck, to the battery pack implanted just underneath the surface in your upper chest. There it looks like a deck of cards that was left by some careless workers on the assembly line that put you together. And by some twist of scientific genius, for DBS to be effective it is necessary for you to be awake during the entire hole-drilling, probe-placing procedure. Despite this being high-risk brain surgery, it is a reasonably good bet that a person sliding down the slippery slope of PD will regain at least a few years of increased functionality from this device buried in the cranium before it needs to be replaced or removed.

But for some the options are few. Apart from an immediate risk-free cure, what is the best we can hope for? What is hope; real, daily, sustainable, no matter what happens hope? What is the source of human hope? One need not necessarily be religious to conclude, as Victor Hugo said, "Hope is the word which God has written on the brow of every man". It is part of who we are.

For me, PD is like experiencing the aging process in fast-forward. Despite doing my utmost to cling to the physical and mental vitality I once knew, my 57-year-old body and mind mourn the ever-increasing loss of youthful vigour and resilience. Life is degenerative. But even so, I can choose where to place my hope. Despite the odds, I can choose to believe. I understand that, for some, Parkinson's disease can quite easily lead to a predictable march into hopelessness. But even if my hope becomes shriveled and parched from time to time, I know that it will never disappear. It is like a seed that even if it lies dormant for a season, it will endure. It will prevail. There is your principal hope in the Helen Keller quote stated above. For I believe that life itself is worth living, if not for oneself, then for others.

Whether a cure for PD comes along or not, this conclusion comforts me daily: It is what you hope in that determines the path of your life. We all get to choose. Will it be the "thrill of victory" or the "agony of defeat"?

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.

Parkinson’s and the Art of Getting Better

I met an old friend the other day who, after a somewhat awkward handshake, asked me the typical, polite throwaway question, "how are you?" Feeling in a particularly self-disclosing mood, and assessing the risk as minimal, I divulged my PD diagnosis, to which he responded, "I would not have noticed. Is it progressing?". With no more than a tinge of sadness, I admit, "As is inevitable, it is getting worse."

Every day, often without realizing it, I conduct a self-assessment. Is my tremor worse? Am I stiffer than I was last week? Are there any telltale signs of new symptoms, such as problems with balance, shuffling gait or (shudder) cognitive dysfunction? Inevitably, at the end of each inquiry, I become resigned to the conclusion, "I am getting worse!" Slowly, like the flow of lava creeping toward a waiting village, Parkinson’s will increasingly have its destructive way. That is just the way it is. Fact. So what do I say to myself in response to this less than thrilling prospect? Get over it? Just give up. Ignore it? Get used to it? Fight back!

From time to time I admit using all of the above self-talk phrases, plus a few too personal to list here. Such is my human experience. But what makes my impending PD peril so different than that of every other human being? After all, who after the age of about 50 doesn’t to some extent have to admit, “I am getting worse.” Maybe not in pervasive ways like those who deal with diseases leading to premature death or disability. But in small ways, perhaps from our teen or early 20 something years, we are somewhat in a state of decline. Who of us after 50 find it easy to: Stay fighting trim? Avoid telltale wrinkles? Summon up more energy? Have broader and more inquisitive thoughts? No, not most of us as we are all living with the metaphorical white sand filling up the bottom of the hourglass. That is just the way it is. Fact. And your response to that is…?

So whether you have PD, MS, ALS or some other acronym-labeled disease, or simply recognize life for what it is, we are all in similar boats, headed downstream at an ever-increasing speed, or so it seems. The question remains, how do you grapple with this fact?

So when I am asked by some unsuspecting friend, acquaintance or stranger, “How are you?”, I automatically think of the day’s self-assessment, and am prone to answer, in effect, "I am getting worse". Few would disagree with that analysis, often eliciting a pitying, "I am so sorry". But if that is the only reality that I acknowledge, it is my choice. Perhaps my response is reflective of my belief that I am in fact getting worse. But am I?

I was challenged after that chance interaction with an old friend on the street corner in downtown Vancouver to reevaluate my response to him. Yes, my Parkinson's disease is progressing. It is, in fact, "getting worse". But am I getting worse? I suddenly realized that in answering the way I had I was replacing who I am, the I, with the Parkinson's disease that I have. In other words, I was letting the disease define me.

I am not "getting worse". I am getting better. I am better at relating to and caring about people who are hurting, grieving, suffering loss, feeling overwhelmed, or just plain sad. I am better at being patient with people who are slower at driving, moving, thinking or responding. I am better at remaining silent in recognition that I do not really have anything useful to say. I am better at taking advantage of opportunities that present themselves today, rather than putting them off. I am better at accepting the difficulties of life, recognizing that they can make me stronger, wiser and a better person.

I am committed to getting better.

Speed on Snow and Ice Leaves Parkinson's Behind

Fifty-five miles an hour (90 kph) uphill on a logging road in the middle of winter, sliding around corners on the powerful snow sled at that breakneck speed seemed like an activity reserved for younger people without the impediment of Parkinson's disease. So too did careening around corners on the ice surface of a lake, trying to avoid flipping the oversized ATV while clipping the rampaging Rhino (see photo) next to you as you scream full speed from one race course pylon to the next. These are activities normally reserved to those who casually convince themselves that they are invincible and immortal. Instead, I found myself in a group of men trying desperately to ignore their aches and pains, as well as their age, as they sought to out do each other in stunts and speed.

What made it slightly more dangerous was that it was warm for a mid-February day up in the mountains more than 300 kilometres (190 miles) from Vancouver. As a result, no one knew how thin the ice was on Otter Lake. Clearly, there were slushy spots on the otherwise snow-covered surface, each discolored patch silently threatening to swallow one of our unsuspecting boy toy. Winter was prematurely, or perhaps temporarily, losing its grip on the shoreline and surrounding hills as well. What should have been a monochrome mid-winter mantle of snow had far too many patches of gravel and greenery, making it appear more like a late Spring scene.

But we were here for some adventure, so the risk of sinking down 70-feet to the floor of the lake or unexpectedly slamming into exposed sticks and stones on the trails seemed quite acceptable.

This was the second "24 hour adventure" that I had experienced at Tulameen (an Indian word meaning "red earth"). The last trip had me and others laughing uproariously as I learned to survive off-road motor-biking in the surrounding hills. And despite being launched over my handlebars on a few occasions, I managed to escape with only a few bruises and increased familiarity with my aging body and resulting humility.

Adventure, for me at least, is a way of feeling fully human and only minimally impaired by my PD. The speed and risk of riding a powerful rocket on skis, all the while wiping away the snow thrown in your face by the snowmobile in front of you, is an exhilarating exercise. Amid the roar of the high revving engine and the need for complete concentration, the tremor, if it exists at all, is forgotten, and the stiffness temporarily ceases and your instinctive movements take over.

And just when I thought exhaustion had gotten the better of me, with my body insisting, "it is time for a nap", the boasting began about which team of two would prevail in the rhino racing. The challenge was too much to forgo. No giving in. No crying "uncle". No wimping out. There will be time later to deal with any banged up body parts. So off we went like drunken drivers intent on using destruction derby tactics if necessary to win. We were like speed skaters on the mostly frozen surface, seeking advantage at every corner to either pass or prevent being passed, missing by inches (mostly) the corner posts on the twisting lake top racetrack.

Drained from the day’s demands I remembered with a smile that life truly is an adventure. The advent of each day presents potential for the unexpected, the challenging, and the entirely new. And maybe, even at the age of 57, and even pursued by the relentless foe of Parkinson's disease, maybe it is not too late to know that childlike sense of anticipation. After all, who can answer the question, "What will today bring?"

To quote the line made famous by Robin Williams in "The Dead Poets’ Society", shall we not shout encouragement to each other, "Carpe Diem - Seize the Day!"

We Are More

We shuffle past,
Small steps
Accelerate
To keep upright,
Fearful of falling forward.
Then heeding hidden signs
We stop.
Stuck. Stiff.
Stone still
For no apparent reason.
Rigid like
Some street performer statue
Waiting as we tremble,
Hands and head
Refusing to relax,
Some hidden motors
Idling rough
Cause constant shudders.

But we are more
Than famous Michael,
Or Muhammad,
Or others who need not explain
That slow and slurring speech
Is not a mind gone numb,
Or worse,
But simply disobedience
Of rogue thoughts
Not remaining on their path.

And we are more
Than seniors
Struggling to smile,
Or flex a frozen muscle.
We can be young,
Of any race or creed
Who face a failing future
Far too soon,
Who lose our livelihoods
Before our plans are formed,
And fret the needs
Of loved ones
Unfulfilled.

No, we are more
Than those who suffer silently
And covet hope
Of cure
Or surgical invasion
Or some pills to pop to stop
Momentum of this cruel disease
That nags our waking hours
And sabotages sleep
With sadness.

And we are more
Than islands,
Floating far offshore
To leave your continent
Untouched for long.
We ring the bells
Not for ourselves
But you
Who soon may touch a silver strand
Or none,
And face the waning winter days.

As we are leaders
In the march to living well
When days are short.
We challenged few,
With faith
And wisdom born of pain,
Bring back reports
Of struggles with the enemy,
Whose terror tactics
Would spread fear
Were we not brave
And battle-ready,
Sharing all the secrets
We have learned through loss.

Yes, we are more
Than conquerors
With gritted teeth
And storied wounds.
For we have much to give
Our pride-filled world,
To teach of loss
And mourning
With resolve,
And barter breadth
For depth,
Trade selfishness
For sacrifice,
A better goal by far.

We are much more
Than diagnostic labels
Lacking names
And dreams
And futures.
For we are needed
More, much more,
To show the way
On life’s unraveled edges,
All in need of living,
To discover
We are more.

I Am Not Suffering With Nor Afflicted by Parkinson's

Written in squiggly letters, Vern Turner scribbled the following just before Christmas 2009:

"About 19 years ago I got up in this group and said "Please pray for me." I have Parkinson's disease. I am not suffering from Parkinson's Disease, I just have Parkinson's disease. I am not afflicted with Parkinson's disease. You live long enough and you get something. I got Parkinson's disease. I could have gotten something else but I got Parkinson's disease."

Language communicates more than simple meaning. The words we choose and use to describe ourselves, our diseases, and others also project our attitudes and beliefs. Certain words evoke certain reactions.

Take the word “should”. “You should try my neurologist.” It is difficult to use the word without communicating judgment, even if unintentional. It is directive, a command. It implies that the speaker knows what is best for the hearer. Even if true, it can leave an arrogant or even paternalistic aftertaste. I learned what danger lurks behind that simple word in discussions with my adult children. I noticed they respond less than eagerly when my “suggestion” was phrased with the word “should”. Sometimes there was a noticeable wince when that word was used. Sometimes there was serious push back. You see the word has an invasive potential tone. What can you say in response when someone says you should do something? You have two choices. You can comply or disagree. There is limited opening for discussion. Changing language takes away the value judgment that has the effect of putting the hearer in a corner. How different it sounds to say, “If you need a second opinion you might want to try my neurologist”. I decided some time ago to avoid the word “should” wherever it might be misunderstood. Even in my professional life, I prefer, “I recommend…” It leaves one feeling humbler when you avoid “should”, and communicates greater humility as well.

In a similar way, consider the words we, and others, use to describe Parkinson’s disease. Whether used by me or about me, I can accept the neutral statement, “I have Parkinson’s”. Even though I am years behind his PD progression, I agree with Vern Turner. Using words like ‘suffering” or “afflicted” or even "coping with" communicates something different than what I want to be said by or about me. I am not a victim, survivor, martyr or particularly brave about my lot. And while I do want to have courage and be as positive as possible, I wish to leave vocabulary describing the more pitiable state to those who truly are suffering and afflicted. Yes, PD does bring unpleasant and sometimes painful symptoms. There are uncontrollable and debilitating consequences triggered by the disease and medications that treat it. Still, I speak for at least some people with Parkinson’s when I opt for referring to being “challenged” with PD. It frames the path I walk with others in positive but realistic terms.

I am learning to choose my words carefully, especially when describing something I need to wrestle with daily.

Paul the Shark and Other PD Fables

Last week I met a fellow called Paul the Shark (not his real name). No, he is not a professional shark or a lawyer. He is a friend of Big Jerry. We shared a meal together, with our spouses, and wanting to know more about the man with the pronounced dorsal fin on his head I asked him lots of questions.

You see Paul the Shark shares the Parkinson’s diagnosis with Big Jerry and me. But more interesting than that, I discovered he has a theory about People with Parkinson's (PwP). He says that PwP are almost all "A-type" personalities. Wikipedia, the source of all wisdom and pooled ignorance, defines "A-type personalities" as, "high energy, out there, socially confident and decisive. Type A individuals can be described as impatient, time-conscious, highly competitive, ambitious, business-like, aggressive, having difficulty relaxing; and are sometimes disliked by individuals with Type B personalities for the way that they're always rushing. They are often high-achieving workaholics who multi-task, drive themselves with deadlines, and are unhappy about delays. Because of these characteristics, Type A individuals are often described as "stress junkies." Type B individuals, in contrast, are described as patient, relaxed, and easy-going, generally lacking any sense of urgency.”

Simply put, A-type personalities live “damn the torpedo” lives, whereas B-type personalities blame A-type personalities for having fired the torpedo in the first place.

Paul the Shark, Big Jerry and I are all A-type persons. We don’t really understand why anyone would want to be a B-type personality. We even married A-type personalities. It is sort of a caste system. Who else would understand why we drive so fast?

However, in the rush to get to the finish line, we A-type persons forgot to ask what it means to get there first. In our case, first prize was Young Onset Parkinson’s Disease (we were all under 55 when diagnosed). It does not always pay to be the first in line!

Type-A types seem to be more prone to encounter heart attacks, but who would have guessed Parkinson’s. Now I don’t know a large number of PwP, but applying Paul the Shark’s hypothesis to those I do know, he may well be right. Further support for the theory seems to come from listening to my PwP cyber-friends. They all seem to come in one type. Now perhaps that is because the Type-B personalities are off quietly taking their diagnoses in stride, all the while shaking their heads at the Type A’s running around with their hair on fire.

While it is a little late to change the diagnosis, it may be beneficial to warn budding A’s to consider the cost of being a stress junkie before its too late. PD does seem to play with your head. Literally. At least the dopamine-producing part.

On the other hand, maybe Paul the Shark is wrong (something Type-A’s rarely admit). Maybe it is just the Type-A people who need to have a theory to explain the battle they are fighting. Recent studies state that personality types most likely to get PD are “ . . . more rigid, introverted, nervous, and cautious”. Sure we are. If those studies are even remotely accurate, Paul the Shark’s theory just got shot down by the theorist himself, with help from his new friends. Don’t go into medicine Paul, stick with the sharks.

Apathy to Optimism - My Parkinson's Pendulum

Parkinson’s disease can test the toughest and most hardened, playing havoc with your emotions. Over time, the Parkinson's pendulum picks up speed. Sometimes it is like a swing, pushed so hard that it reaches a near horizontal plane at both ends. It is then that I feel insecure, a sense of being out of control. Yes, there is a rush as I speed from one emotional pinnacle to the next, from push to pull and back again. But I wonder each time that I fly by the safety of the ground, who or what is pushing me out of control. Or am I simply pumping my own legs to achieve the heady heights and speed.

Life with PD has been like that lately. One minute there is exhilaration at the challenge, and the next discouragement. I move with ever-increasing velocity from enthusiasm to apathy, optimism to cynicism, ready to take on the future then over-burdened by the present. I know it is related to the PD, whether it be the disease itself, the medications, or the psychological reaction to the uncertain but inevitably compromised future.

And yet there are moments, like now, when the spin cycle slows enough for me to gather my thoughts and remember my commitment to being positive. You see, I realized that it must be a commitment, a decision, for there are those who will beckon me to visit the land of negativity, all the while gripping their own half-empty glasses. They seek to defeat any sunshine that might creep ever so tentatively from behind the cloud that is raining on every parade it can find.

At every step along the path of Parkinson's there are choices I have to make. Will I be brought down by the pending problems, or buoyed up by the challenge to find the silver lining. Will I, by words and attitude, choose to encourage others and myself, or fall into the pit of despair, self-pity and depression? In a phrase, will I be positively Parkinson’s or sadly resigned?

Of course, this vacillation in living goes to the very core of who we are. It forces us, even if we do not face the challenges of a debilitating and degenerative disease such as PD, to ask serious questions we fear because we do not have adequate answers. What or who will we put our faith in? At the risk of "wasting" our time, energy and money, what investments in the future will we make? Despite how we may feel; hurt, alienated, angry, or isolated, how will we live each day such that each person we touch will feel cared for? These are not questions that can be answered once and then never revisited. Curious, but that is the way it is with most important issues. They must form part of the fabric of our lives, demanding of us a response, a commitment, a decision, on a continuing basis.

The emotional swing goes forward then backward. For every action there is a potential reaction. Most of my reactions are ill-considered, emotionally-driven and self-centered. But I have learned that it is often better to feel the sting, take the punch, and study the source so that my responses can be reasoned, tactful, sensitive and caring. It is the way I can slow the swing of the pendulum to a measured pace.

It is my prayer that the start of a new month will be an opportunity to re-commit to the goal of living out my Parkinson's positively rather than succumbing to cynicism. Let me point the way to Hope and in the process replace the panic and pain of the pendulum's swing with peace and purpose.