The Erosion of Parkinson's Disease

The small waves lap at night incessantly, like kitten tongues against the milky shore.  Their ceaseless licking strokes erode with unseen strength; carressing, creeping, taking.  These tiny tidal waves in secret carry the grains of sand away, like Parkinson's and age steal my vitality and vigour, depositing them on some distant ocean floor or unknown island shore.  Unrecoverable, the loss is mine.  No more the carefree beach ball days when we ignored the gritty specks between our toes or laughed in tumbling waves that left the stolen sand in every body crevasse. 

It seems that I must watch and wait until the shore is gone, and in its place unfriendly boulders lay to slow my stumbling path.  The sand that clings to cracks and grassy clods drains grain by grain, like from the famous hourglass, but now to endless seas.  It's gone so soon, too soon it seems.  And leaving me with shivers on the craggy shore once filled with barefoot bathers laying, playing, loving midst the castle dreams made of sand I dream.

I dream of shores restored by some reversal of it all that courses through my veins with victory and relief.  Or if not soon then let the sand return for those who yet might know a sunny, smiling day.  For just as beaches drift away I know that there are cliffs so steep and strong that must surrender to the waves the sand that made the softest shores.

I will not mourn the theft of sand from shores a part of me, but laugh and know that someday soon the master of the ocean's power will bring it back.  And joy can be the rhythm now of waves that wash through me.

Confronting the Valley of Reality

How do you return to the valley of reality after being on the mountaintop? How do you retain the lightheartedness and anticipation of adventure when it is over?

Over the past 2 weeks I traveled 7575 kilometres (4700 miles) by motorcycle through 6 American states (Washington, Oregon, Montana, Idaho, South Dakota and Wyoming). Most days were unplanned until planning became necessary, with only 2 motel reservations having been made in advance (July 4 weekend), one of which we did not use. I averaged 475 kilometers per day (300 miles), experiencing a lot of country and excitement every day. It was nothing short of exhilarating and yet, with the exception of some troublesome work problems creeping in, the days of riding left plenty of room for uninterrupted "helmet time". The necessity of focusing on the road, and whatever peripheral vision permitted, has a way of brushing from my mind all thoughts of "significance". Thinking is reduced to itinerant translations of relatively insignificant current events: "I wonder what kind of bird that is?"; "How fast should I take this 40 mile an hour corner?"; or "Is not life great!". These were times of mountaintop experiences. Peak to peak, summit to summit, picture-perfect panorama views from snowy places 5000 feet closer to heaven.

But the reality I returned to is a valley. It is where people live. And it is back to the valley that I must bring the perspective gained from being on the mountaintop. And yet there are strange feelings of confusion, frustration and discouragement. Returning to my home in the valley means I must leave the high adventure behind. I am glad to be home, but confused about my longing for just a little while longer on the road. At first I try and retell the tales from each peak we climbed. But I can never adequately explain the events and experiences to those who remained in the valley. How can I explain the formation of the dark and threatening clouds that left me feeling vulnerable, or the sunset that left me longing for it to continue indefinitely. How can I describe the wrinkled, leathery skin of the woman who served lunch at a tiny café in the Oregon outback? What do I say about the dozen shades of green evident in a single glance as I speed by a stand of trees bordering the creek in a shadowy valley?  How do I accurately explain the warm and comfortable camaraderie of my fellow adventurers?

The truth is that adventures can never fully be explained. Like riding a roller coaster, the best description may simply be "Wow!”, or no words at all. The stories I can tell are subjective dramatizations of the best my recollection can conjure. If I exaggerate what occurred, it is for effect and out of frustration that I cannot recreate the feelings. If I understate, it may simply be a lack of adequate words that force lame narrative. In the end, the more extraordinary the adventure the more both the storyteller and the listeners will remain frustrated. The storyteller because his words have failed to capture the vibrancy of the scenes, and the listeners because they were not there and cannot fully enter in.

Confronting the valley of reality often leaves little satisfaction. There is a longing to return to thin, cold air of the mountain meadow where a doe and her faun nuzzle the long grass yet remain ever vigilant. There is a sadness because I cannot bring the mountaintop into the valley.  But I must return to the valley a different person, which can change the valley.

I have learned lessons from my adventure in the mountains. I have found my way along trails, through time-worn towns and across sagebrush plains.  And I can point the way for others to go and thrill at knowing the mystery themselves.  I can bring the magnetic power of the mountain to change those in the valley as it has changed me.  Perhaps my Parkinson's disease can be the adventure of the mountaintop that I can bring back to the valley so that others may venture to the peak with less fear.

Fear not the valley, for it exists to make the mountain what it is.

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.

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.

Dare the Dragon of Depression

In the relentless gray of this November day the cold rain halfheartedly maintains its soggy grip on near-leafless trees and unmowed lawns. It is drab, dreary, and the sunny days of last week, last summer and some future day seem depressingly distant.

On days like today the dragon of depression stalks me, breathing not fire but darkness on me and others who are already tired and stiff from trying to control the constant tremors. The fierceness of our Parkinson's foe often leaves us too fatigued to find any hope to re-light the lamps that dragon breath has doused. Sometimes we cannot fight the darkness, the depression caused by constant demands upon our deteriorating bodies. Sometimes we can barely grit our teeth and close our eyes to glimpse some distant light of memory or anticipation. Sometimes these stressful short, fall days and restless long nights leave us feeling desperate and alone, wrung out.

How do we face the dragon of depression? How do we battle back from doom-filled thoughts that discourage and disturb us?

I am but an early onset traveler on this narrowing road called Parkinson's. I am not dominated yet by symptoms, but still challenged to fight back harder every day. But I do know that 50% of those who deal with this disease will have to battle the dragon of depression. Already I have felt the cold breath of the dragon trickling down my spine from time to time.  I needed a battle plan, a strategy, and a weapon. So far I have chosen those set out below.

While seemingly trite, my overarching battle plan is to 'take each day as it comes', which, as those who have tried know, is much more difficult than it seems. When dealing with despair I seek to avoid the anger and frustration that follows the thoughts of how I got here. Why me? Why now? Who did this to me? What could I have done to stop it? In the darkness a rearview mirror is helpless, and lends itself to paranoid reflections. I cannot fight the battle today by focusing on the ones that could have, or should have, been fought yesterday. Likewise, tomorrow has not yet rallied its enemy forces against me. Fear of a difficult future does nothing but sap the energy I need for today's contest. I must face only the fight before me! I believe I have what it takes for that.

My strategy is simple: learn to not fear the darkness, take solace in its silence, embrace it as a friend who can teach wisdom about who I am and how to meet the challenges, present and future. Running from or in the dark is dangerous, and panic leads us nowhere. It is not the night that need be feared. It is the fear itself that leaps inside of us, our breath quickening as we drop our guard and run headlong to escape something we carry with us. The preferable path to take is to wait, accustom our eyes to the darkness, and move deliberately through it, observing the directions that are best to take. It need not be a journey taken alone. Friends, be they professional or personal, are often necessary companions. We will find our way out.

The weapon I attempt to employ was reflected this week in a card I received from a friend in the legal profession who stated that this blog reminded him of the old Chinese adage, "It is better to light a candle than to curse the darkness". We do not have the power to convert the night to day, to control the sunshine, to banish the gloom and darkness. But we can light a candle. And wielding its tiny flame we can keep dragons at bay. There is always hope if we but seek it. For some it is the hope of finding a cure that lights their way through the darkest hours. For others it is a faith that no matter the difficulty there is a purpose in it all. As it says in the Bible, "... we do not lose heart... we are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted but not abandoned; struck down, but not destroyed... therefore we do not lose heart" (2 Corinthians 4).

So, as the winter wrestles warmth away and sometimes leaves me weary and overwhelmed, I will sit quietly sipping a glass of Pinot Noir with my wife, light a fire in the fireplace and determine in that moment to let the flames defeat the dragon.