Wednesday, July 10, 2019

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 67th 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 67th 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.

Sunday, July 7, 2019

Rise - Is It Time to Change?

 It was seven in the morning, and I was up, dressed and waiting at the rendezvous point of the one-hour walk that would start four days of challenges. While characterized as a “retreat”, it was more like an annual boot camp specifically designed for people with Parkinson's disease. It was appropriately called “Rise”. Rise from sitting at a desk in front of a computer or a meeting for long hours every day. Rise from the denial, blissful ignorance and wishful thinking.  It was time for a realistic self-assessment.  Physical, mental, emotional, and even social changes needed to be made. Parkinson’s was increasing its grip. My willful blindness to the deteriorating state of my body, along with the deceptive nature of my thinking (or lack thereof), could no longer be ignored. Things had to change.

The past weeks were difficult. It has been time to confront and create a” new normal” where work was not all consuming. Now there were limited excuses to avoid serious self-care. The days at Rise demanded that I take initiatives and make changes. It was similar to the stretching that we engaged in at the boot camp. My muscles are stiff and unyielding despite my determination. Touching my toes was physically impossible, the equivalent of bending a 2 x 4 piece of lumber. My hamstrings and related muscles would not yield, coming to the end of their attempt with my hands touching just below my knees. Other stretches were equally laughable, disappointing or worse. Not only had my muscles contracted during recent years, but I ran out of breath easily, and by coordination was nonexistent. I have a long ways to go.

Some changes come easily. Others are thrust upon us, causing pain. Some changes come about slowly, almost imperceptibly. Whereas others strike unexpectedly like a flash of lightning. We can control some changes in our lives, while others may be out of our reach and inevitable. But how we respond to change, or even initiate it, can be of great significance.

What did I learn from Rise? Whether making changes, or adapting to the changes thrust upon us, it will be difficult. Let me distill the lessons of my four days of confronting change. These questions define a way forward for me.

1.       Why do we want to, or need to, make changes? This may be the easiest of the following questions. In my case, Parkinson’s unrelenting attack will increasingly seek to erode the quality of my life. I owe it myself and others (my wife, family and friends) to do the best that I can with “the cards I have been dealt”. Life is a gift to be handled with care, not squandered, abandoned or abused.

2      What exactly needs to change? Self-assessment produces, in my case at least, a list that is far too long, and embarrassing to share here. So much needs to change. But we can only do one thing at a time, and not everything can be a priority. For me, the priorities fall into a few categories: physical exercise, writing, soul care, and relational.

3.       How will I bring about needed change? Here is where the planning and commitment get derailed. For each priority I need a plan, a roadmap, an assessment of how I will take the necessary incremental steps to bring about change. It is easy for me to be na├»ve and overly optimistic. But I know from failed attempts in the past that grandiose plans often yield grandiose failures and discouragement.

4       Who will help me make the needed changes? In many cases, change involves more than myself. To change eating habits, carve out time for exercise, arranged for quiet time to think, write or read, and spend time with important relationships all involve others. But, engaging their assistance will also build accountability and encouragement. I need to be specific in my requests for the assistance of others.

     When will I start? Habits developed overnight are typically lost within a similar period of time.  A recent study of 96 people published in The European Journal of Social Psychology found it took on average 66 days to form a habit. However, this number varies widely dependent on the person and circumstances, as well as the particular habit..
It takes more than a 4-day weekend to make changes. But it’s a start, a much-needed new beginning. Let’s commit to change.  See website for Rise details.  https://www.risepdretreat.com

Sunday, June 16, 2019

My Father The Dam


Silent, strong and deep, my father was like a dam.  He held back the emotions that must have been in those final years. The anxiety of knowing he had Parkinson’s disease that commandeered his body. The fear of knowing he was caught in a narrow gorge as awareness of his world shrank with Lewy Bodies dementia. The struggle to communicate as turmoil replaced the peaceful, still waters of the early days.  And in the end, when he could no longer hold the waters back, he let them pass.  They gushed through turbines, sending high-voltage emotions to us, his family; providing as he always tried to do.

Is it my turn?  Is Parkinson’s genetically determined? Or is my parentage simply one factor of many? Was it the innocent but unavoidable exposure to the toxic chemicals, cast like a canopy over our apple orchard trees each spring and summer? It could be either, both or neither. We may never know. For Dad it doesn’t really matter, and for me it matters little. Although it may assist those others who will know the many symptoms of this idiosyncratic disease. But, even if I knew, there is no reason to blame my lineage. We all pass on our imperfections, resist them as we might. We cannot hold the water back completely or indefinitely.

He was not perfect but he did his best.  He was a good father. I think of him still, these 10 years gone, my father, the dam.

Wednesday, June 12, 2019

Stuck in the Tunnel


I knew this was a special medical procedure when at least half of the 30 or so ailments or conditions found in the hospital’s disclaimer I had to sign were things I had never heard of. I did not want to ask.  I just ticked the ‘no’ boxes and signed at the bottom and handed the form and clipboard back to the clerk.


She then asked a curious question, “Can you hold your arms up above your head?” Not thinking this could be particularly important, I raised my hands above my head in a diving position with only slight strain in my Parkinson’s-stiffened shoulders. Apparently, I passed the test. However, I failed to ask what would prove to be a critically important question; “How long?”

It was not the first mistake I had made that morning. I had followed the preparatory instructions to the letter, assuming when it said, “nothing to eat or drink for four hours before”, it meant that I had to postpone taking my Parkinson’s medications. I thought it best to tell the medical clerk not to be alarmed at my shaking, and explained my unmedicated state.  She obtained approval for me to take my pills, but it was too late. The shaking had begun.

Of course, the tremors only increased when I saw the technician arrive with a syringe and other paraphernalia. After searching for a vein, he informed me that I was being injected with gadolinium. Gadolinium sounded to me like the name of a small village occupied by hobbit-like creatures. Or, perhaps, a newly-discovered galaxy. In fact, I was informed it is one of 17 rare earth chemical elements, and it is used in conjunction with an MRI (Magnetic Resonance Imaging machine) because of the element’s magnetic properties providing better definition for the images to be taken. I assumed it was safe.

Having surrendered up my hearing aids, asking any further questions, or at least hearing any answers, was likely to prove challenging, if not impossible. Patting the platform, indicating I was to lie down on a somewhat uncomfortable horizontal frame, the technician moved my arms above my head into the recently demonstrated dive position. Speaking loudly in one ear, he asked what I assumed was a rhetorical question; “Can you hold this position for the next 35 minutes?” How was I supposed to know? I do not recall ever having to maintain that position for 35 minutes.

I discovered a long time ago that I am not claustrophobic (that had been one of the questions on the disclaimer I had marked no”). And it’s a good thing because I was slid into the MRI tube feet first, arms in the dive position, looking like I was practising for the one-man luge event in the Olympics, except for the arms. Hearing various clicking sounds, I knew we were “locked and loaded”. I realized then that 35 minutes would be a very long time.


Squeezed into place, unable to move, the procedure began. What followed was a series of very loud sounds; something like a cross between banshee screams and intermittent air raid siren. In advance of each noisy invasion, there was a computer-generated voice, which seemed in my deafened state to whisper, “Breathe in. Hold your breath.” I wanted to ask, “How long?” But I was certain I wouldn’t have heard the answer. So I obeyed, breathing in all the oxygen I could, given the extremely cramped conditions, and breathing out when told to do so. All the while, the machine emitted computerized screams.

After what seemed like a lot longer than 35 minutes, I was withdrawn from the MRI “compression cylinder”. Despite aching shoulders, a couple of needle stab wounds, I knew the answer to the questions: “Yes, I can hold my arms over my head in the dive position for 35 minutes.” But please don’t ask me to do so.

Wednesday, June 5, 2019

Men, Aging and Parkinson’s Disease


Sad and silent. These men shuffled into the small meeting room, supposedly to hear me share my “story”, my experience with Parkinson’s disease. While I am a poor judge of age, I estimate that they were all in their 80s or 90s. Most of them appeared to remain ambulatory only with the use of a walker, neatly parked near the door like shopping carts at the entrance to a grocery store.

I didn’t know whether I should be encouraged by their attendance, or discouraged by their lack of engagement in any sort of dialogue. It was a tough crowd. Usually when I speak in public I try to connect with some friendly faces in the audience. In small group settings, I will ”tag” each listener in order to make some connection, searching each person’s eyes for navigational clues of approval, disbelief or uncertainty. But gleaning anything from this group proved challenging, if not impossible. Except for my host, who had been responsible for my invitation, this somber troupe of seniors seemed to have left their smiles in some secret Sphinx -like place in the past.


Defeated, discouraged and mute, they remained unresponsive, leaving me to answer my own questions, whether rhetorical or not. Like prisoners attending mandatory rehabilitation classes, I wondered if any of them would value or remember anything I said by the time they completed their shambling journey back to their chosen isolation.
“What have we done?” I asked myself.  As I looked around the room I found myself comparing two scenarios. On one side there were the interactions I recently enjoyed with students who probed, questioned and found it difficult to remain quiet for any length of time. Those engagements seemed diametrically opposed to this gathering of elders, who neither questioned nor commented, apparently preferring silence. What happened in the 60 years between the ages of 20 and 80? Immediately realizing how close I am to the latter, I found a nameless fear slowly seeping into my soul. Surely, aging is more than just surviving. Life must be more than an endurance test that we will inevitably fail. What will prevent me drowning in the “slough of despond” as I age? What will save me from the self-pity of a shrinking solitude?


We aging males, entering the “retirement” era, are left with many demanding questions, perhaps best summarized in the one posed by John C. Robinson book’s title: ”What [do] aging men really want?” We can all agree that we don’t want to feel threatened, angry, afraid, useless, embarrassed, regretful, bitter, or insecure as we age (or prematurely experience aging due to the far from gentle erosion of Parkinson’s disease).

But what do we really want? Giving up is not acceptable. Perhaps there might be one answer to be found in the final words of the poem, “Ulysses”, by Alfred, Lord Tennyson:

     Tho’ We are not now that strength which in old days
     Moved earth and heaven, that which we are, we are; 
     One equal temper of heroic hearts,
     Made weak by time and fate, but strong in will 
     To strive, to seek, to find, and not to yield.

Wednesday, May 29, 2019

Just Leave Me Alone!


When life’s circumstances seem to trap you, squeezing you in their grip, applying increasing pressure and demanding a response to questions that are bombarding your universe like incoming meteors, everything gets messy.
We feel out of control (as if we ever were). Death, disease, disability, discouragement, depression, disorientation or disaster - and these are just the things that start with the D - threaten our daily existence. We find ourselves scrambling for cover, digging a foxhole, curling up in a ball, or hiding our eyes to shut out the fear, the pain, the inevitability.

“Just leave me alone!”, we shout to no one and nothing in particular. Can’t we just make it all go away? Can’t we just fix it?

The answer is “No”. We might be able to deny the situations we face for a while. Difficulties might be delayed somewhat. But ultimately, we must deal with the tough stuff, face our fears, fight back, accept suffering and sacrifice as necessary, or at least inescapable, parts of living.

Lately, too many friends are being confronted by the harshest of realities; difficulties from divorce to dying, and a veritable invasion of other sad events. Sometimes, like missiles, these struggles come in clusters, as if the destruction caused by one is not enough.


When it all seems too much, too hard, where do we turn? The Greek philosopher Epictetus said, "We cannot choose our external circumstances, but we can always choose how we respond to them".  But let me add, doing life alone, especially in the crucible when heat and pressure so easily overwhelm, is not the answer.

We are designed for interdependence, relationship, community. We cannot hope to prevail on our own. We need to share the burdens, the pain and the tragedy, especially when they don’t make sense. We need the freedom to ask” Why”, while knowing that there is no obvious answer. We need caring listeners to be our mirror. We need allies to help us fight back, maintain the hope regardless of the odds. But in the process we must risk being misunderstood, rejected, and disappointed by others. After all, we are far from perfect ourselves.

Image result for world parkinson's congress japanP.S.  While drafting this post I felt alone. I had planned to be attending the World Parkinson's Congress in Japan next week.  I was looking forward to being there mostly to spend time together with friends from around the world who are part of Parkinson's disease community. Unfortunately, I will not be there.  Maybe 2022?  In the meantime, let's stand together. As Michael J Fox said,“We may each have our own individual Parkinson’s, but we all share one thing in common. Hope”

Saturday, May 25, 2019

From Graduates to Grandparents

It has been a very long time; 40 years. And yet four decades seems to have sped by in an instant. Memories had somehow been compressed and stored in the archive function of my brain. Recall was the problem.  Without the name-tags, facial recognition left me stammering, trying to identify the elderly person holding out his or her hand in greeting. Once identified, by furtive glances at name-tags, my classmates and I launched into storytelling and exchanges of status reports.  As I moved about the room from small group to small group, each person took awkward small sips from their wine glasses.  The 40th reunion scene reminded me of hummingbirds hovering momentarily, probing newly-opened blossoms and then moving on

Careers had come and gone in the past four decades. “Retired” had been added to the biography of many. A whole generation has grown up, and in the process made many of us grandparents. The graduates of 1979 UBC Law School were as diverse bunch, at least in terms of personality and background. The career paths of those in attendance stretched across the gamut from well-heeled executives, who had never practiced law, to retired judges. There were politicians of every stripe and practitioners of every calling. A curious and incongruent crowd of older folk, so disparate in their views and appearance that an observant stranger would not have easily identified what they all had in common.

Admittedly, I attended this event with some trepidation. The legal profession rewards confident men and women who show no sign of weakness or vulnerability. It was no secret that I had Parkinson’s disease.  There was no effective disguising its symptoms. But, scanning the list of those of our class who had passed on, I realized it was a privilege just to be in attendance.

Why do we hold reunions? Sure, there are those who are simply curious and attend in order to extract the latest news, the juicy bits, just to be “in the know”.

Perhaps to others, the reunion was a sort of  a tontine, or death pool, where the last person alive “wins” and we attended to record the fact that we were still contending for the prize.

But I think there is something more benevolent in play.  Those years in law school were formative.  Not just because of the legal principles we learned together, but there was a recognition, if somewhat ill-defined, that our relationships with one another were important. Despite how different from each other, we survived the crucible of those 3 years together. Despite the competition, there was a genuine interest in each other, and even a recognition of the need for mutual encouragement.

Life, like law school, and Parkinson’s, is best lived by taking the risk of sharing the experience with others.  Otherwise, the challenges can easily drive us to retreat, giving into the fear of rejection and misunderstanding.

Driving home from last night’s reunion I thought of those of my classmates who did not join us, and I wondered why they had stayed away. Could it be they did not want to be judged or compared to others?  It may take some courage, but whether it is attending a reunion of old classmates or getting together with others who struggle with PD, the benefits of taking the risk far outweigh the certainty of loneliness.