Monday, September 2, 2019

Are you only as old as you think you are?

Often do you ask yourself the question, “How long would I like to live?” If you’re like me (heaven forbid), this is a question you rarely spend much time pondering. To a large extent, this may be an irrelevant question to ask.  We are not prone to ask the question with statistics in mind. One reason for that is the realization that life expectancies are increasing at a fairly significant rate. In Canada, when I was born in 1952, the life expectancy I was given was 66 years. Today, my life expectancy for someone my age is 81. For whatever reason, I have gained 15 years of living, statistically speaking.   

Many of us seem to prefer the cheerfully fatalistic answer taken from the Doris Day Oscar-winning theme song, “Que Sera Sera” (What will be, will be).  This classic goes on in lilting, mellifluous tones, “The future’s not ours to see”. Although I was only four years old at the time this song was topping the charts, I am reminded of it occasionally because of my wife’s affection for old movies.
Assuming that most of you are too young to know who Doris Day is*, you are highly unlikely to be asking the question at all!

Yesterday, I had a stimulating conversation with a 90-year-old friend. Among other topics, we discussed aging. Phrases like, “You’re only as old as you think you are”, ”It’s about quality not quantity” and “Why do most of us have such a strong drive to survive beyond the statistical norm.?” I commented that Parkinson’s disease has all the attributes of accelerated aging, which prompts me to think more like my 90-year-old friend, than my 67-year-old body would otherwise suggest.
While it might be nice to muse about the possibility of reducing one’s chronological age by simply “thinking younger”, that activity is insufficient in itself. After all, whatever the age, we inevitably must recognize that life is short no matter how young or old we are.

I also disagree with our society’s constant swooning over the young, pursuing a modern age version of a Fountain of Youth. Is there really no merit in getting older? Does human life actually have a “best before date”? I think not. I recognize the extraordinary value in the resilience, enthusiasm and creativity of young people, having spent six years engaging university students. I also acknowledge the unfortunate propensity for at least some of us in our senior years to be complainers, close-minded and self-centered. 

However, I see great value, and have respect for the elderly, as opposed to those of us who are simply older. Many of my senior friends are deep thinkers, love to laugh, challenge my presuppositions and prejudices, and are simply not willing to resign themselves to, “what will be, will be”. The future may not be ours to see, but the present is ours to live.

Accepting the sometimes mind-numbing, body-trembling and rigor mortis-like stiffness, I have an answer to the question, “How long would I like to live?” One engaged-to-the-extent-I-am-able day at a time, with a mind that recognizes not only the troubles of the present but is motivated by the possibilities of the future; thankful I can share the journey with others, both young and old.

*For those of you who might want to know (all three of you!), Doris Day lived to be 97 and died on May 13, 2019.

Saturday, August 31, 2019

Apathy and Parkinson’s Disease

To the applause of Canadians everywhere, the Toronto Raptors won the 2018/19 NBA championship. Did you really care? Do you have some travel coming up? Are you excited about it? Maybe you have lots of free time in your schedule for the next couple of weeks. Are you looking forward to enjoying those hours and days? You may be anticipating meeting an old friend, high school buddy or long-lost cousin for coffee. Are you enthusiastic about that?
 I am certain that some of you at least ascribe to the dismissive line of Rhett Butler in Gone with the Wind:  ”Frankly my dear, I don’t give a damn”.

I thought I had experienced most of the symptoms of Parkinson’s, or at least knew someone that had. However, I was ill-prepared for one such attribute.  It crept up on me the past few months. It has proven a stealthy and deceptive enemy, masquerading as a temporary circumstance brought on by any number of life events. It was something I expected to simply “go away” as my life patterns changed. I found myself making excuses when it did not, saying things like ”when (fill in the blank) happens this feeling will disappear”. But it hasn’t. So now is the time to name the unpredictable and elusive symptom apparently experienced by up to 70% of people with Parkinson’s. APATHY. Having capitalized each letter of the word I must admit that it was for emphasis rather than because I felt strongly about it. In fact, everything feels a little (or a lot) emotionally flat.

The shameful reality is that I have fallen victim to this debilitating state of body/mind. Although I’m not continuously aware of its presence, it can climb into my skin at will, like some form of alien. It seeks to commandeer my days, pretending to be the result of fatigue, insomnia, sadness or even depression. Apathy can sit on my shoulder, whispering in response to any attempt at motivation, activity or effort, “Why bother? Just rest for now. Perhaps you’ll feel better in an hour or two. Or maybe tomorrow.  It’s not really that important anyway.” Embarrassed now, I admit to having listened to these prompts and complied, or rather succumbed, to their indifference.

To be completely honest and transparent, when I am caught in the grip of apathy almost everything seems veiled in passionless passivity. The things I used to enjoy don’t seem so important or even attractive. Procrastination and indecisiveness prove stronger than self-discipline and logic. Take this blog post for instance. I have been planning on getting this written for weeks now. But it never seemed to make it to the top of the priority list. In fact, there isn’t much of a list of priorities.

10 years ago, August 30, 2009, I began Positively Parkinson’s in order to encourage others facing the day-to-day battles of PD. No candy-coated aphorisms. No false promises. No venting, rage, or ‘woe is me’ narrative. Just living out the adventure and giving hope as best I can. The 10th anniversary of this blog should have been enough to rediscover the spark and reignite some passion for the cause, given that I had been looking forward to more time to write posts to share. But  apathetic indifference struck a near knockout blow before I saw it coming.

What exactly is apathy? It is not depression (although it may lead to that I suppose). But the two have some similarities, as both are believed to have neurological, psychological and emotional elements. Of course, the Latin root words provide a fairly clear description of the word:  “A”, means without” and “Pathos”, means passion. That’s easy enough: without passion. And this may be a more pervasive state than many of us realize.

As Helen Keller said, “Science may have found a cure for most evils; but it has found no remedy for the worst of them all - the apathy of human beings”.

My guess is that we all know what it feels like to be apathetic, especially if we live with Parkinson’s disease. According to some studies, 70% of us are affected by this silent joy-killer. But what are the causes? And, perhaps more important, what is the antidote?
My own view is that apathy is not just a shortage of dopamine, but a quiet, self protective response to the lack of hope. Hope for a cure. Hope for a slower degeneration of normal functioning. Hope that there is significance and purpose in it all.

The remedy? Perhaps the best response is a combined strategy (to deal with the multi-pronged causation).  Make sure your meds are working properly to deal with the neurological effects of PD as best they can. Second, enlist a support team to provide structure and process, as well as encouragement and accountability. This could include a spouse/significant other, family, friends and professionals of all varieties. This can go some distance to rebut one’s own emotional and psychological slide into apathetic darkness. And lastly, depending on the supply of energy and commitment left in your tank, establish very modest goals, typically one at a time. For instance, my goal was to write this 10th anniversary blog post before the end of August. There is nothing quite like succeeding at modest goals to give us the motivation to push ahead.  That sense of accomplishment will help build hope in future achievements.

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.

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.