The Chicago hit, “Just You and Me”, that I dedicated to my wife and sang in the karaoke bar was a little off key and one octave lower than Peter Cetera did it in 1973 (the year before we were married). But that, and the fact that my tremor was accentuated due to being stressed and having forgotten my Parkinson’s medications, didn’t cause me to be embarrassed in front of the entire Kuhn & Company team. They were supportive of and accepted me for who I was, as they have always been (which excuses more than just the bad singing and the shaking).
This scene took place at the "Northern Lights" night club aboard the Holland America ship "Zuiderdam”. It was the 9th Kuhn & Company retreat aboard a cruise ship plying the West Coast waters for a few days of relaxation, teambuilding and continued professional development. These short repositioning cruises that frequently leave from or return to Vancouver in May and September provide an ideal opportunity to express appreciation for our fellow team members, as well as a chance to focus on team issues. This has become a unique highlight of our law firm culture. With the whole team, not just partners or lawyers, and spouses/significant others, it is a hallmark of our non-hierarchical team orientation and core values. But even more importantly, spending three or four days together provides ample evidence for the accepting and caring environment I am honored to work in. And that leads to a bobblehead.
In most law firms no one would risk buying life-like bobblehead dolls as gifts for the partners. Least of all when one of them has Parkinson's, resulting in his head experiencing tremors from time to time. But that is exactly what the Kuhn & Company team did. I was proud of them. Courage and creativity thrive best in an environment where risks are encouraged and people are accepted for who they are.
Despite being the senior partner, I have felt and experienced an incredible amount of support, acceptance and caring since announcing to all members of the team the results of my diagnosis two months after I received it. By that time there were minimal signs of the disease; deteriorating handwriting and some tremor. But I felt I needed to trust my fellow team members with this personal information early on, and well before any of them could ask, "Why did you not tell us sooner?". Of course, there was some risk involved, as some may have interpreted this news as a negative forecast for the future of the firm, but it proved to be just the opposite. No one left, and everyone was fully supportive, understanding and accommodating of the various consequences of the disease.
As my handwriting deteriorated further, a stamp was obtained for my signature, which due to stiffness changes every time I try to make it. When my typing speed deteriorated and sometimes a stiff finger stuck on a key a little too long resulting in some curious, and even laughable, typographical errors (such as the time I sent an e-mail signed "Boob" instead of "Bob"), I converted to voice-recognition software. This demands that I proofread much more carefully, as I am prone to make phonetically correct but embarrassing errors if I am in too much of a hurry, which is often the case.
The lessons I have learned from being in a highly supportive work environment is that having Parkinson's disease need not be a fast-track to retirement or leaving behind the challenging professional arena that I have enjoyed for so many years. I recognize that everyone who contends with PD is not so blessed, but I would urge early disclosure to at least avoid the stress of hiding symptoms from fellow workers and risking the loss of support in the workplace. After all, even a bobblehead can sing karaoke and hear the crowd shout a warm, if somewhat overstated, "Fabulous".
The upscale restaurant was quiet, except for the stealthy murmur of conversations at a few nearby tables, punctuated by a clinking of cutlery from time to time. We four lawyers sat by the window, sometimes peering out into the dark streetscape to watch a late evening commuter or two hurrying for home somewhere nearby. Paradoxically, I felt both tension and comfort at the table, as if two wrestlers were struggling for supremacy. But assessing the scene with the objectivity of a professional observer, I found this conflict almost normal and acceptable. Except that I knew each one held a secret tightly and awkwardly in some hidden place.
There was Ed, the slightly tense, dark-haired barrister still in his court garb, having arrived earlier than the rest to enjoy a short liquid reprieve from the rigors of a trial that he announced was destined to run a number of weeks yet. He talked easily, as do those of our comrades who frequent the courtroom, somewhat preoccupied with the judicial battles of the day, most of which he had won. But he dared not disclose his secret.
Karen was confident, yet obviously caring and unconventional for a lawyer as she talked about the diversity of her roles within the legal profession. Her world seemed made up of people rather than focused on the technical issues that plague the billable time of most lawyers. Clearly she had the ability to succeed in any number of circles, as she described her relaxed relationships with names that everyone recognized. But she kept her secret safely hidden.
Ken, on the other hand, was casual. Older than the rest of us, he eschewed formality sporting shorts and sandals, regaling us with his counter-culture adventures as a reporter in his pre-law school days. There was a hint of homesickness in his voice as he reminisced about those days of his youth and its lopsided lack of schedule or steady income. He might have come close to betraying his secret, but he held back at the last minute it seemed.
I, however, was unable to contain my secret when the topic of Parkinson's disease unexpectedly leapt into the conversation like a lion's roar that could not be ignored and demanded of me my carefully concealed packet of truth. Ken had commented on a friend with PD and I knew I could protect the secret no more. There was a barely noticeable catch in the breath of each of my 3 dinner companions, some forks hesitating in mid-air just a second as they each took in the news of my diagnosis. Their consequential questions were polite but understandably naïve because for the most part lawyers thrive in the rarified atmosphere of disease-free living. After 30 years of living out the role of a professional problem solver, advocate, diplomat and wordsmith, the old adage of "never let them see you sweat" was never truer.
It is not that lawyers lack compassion anymore than anyone else. It is just that in their world there is little opportunity to recognize or express vulnerability, or any other "softness". We are "fixers" who must stand firm and fight, staunchly and unemotionally defending our clients and protecting their rights. We cannot sacrifice the confidence of our clients; so no tears or looks of dread or dismay.
But despite how it felt to surrender my secret to my classmates, I knew that they had secrets too. Ones that could only be unpacked when it was safe to do so, and where that "weakness" would not be despised or derided. Certainly, it was for those of us called to the bar a very rare circumstance that would allow any unveiling of the personally painful or the frightening. In fact, many of our professional friends will likely go to their graves wrapped in, and clinging to, their cloaks of self-confidence.
So my secret had been shared. But in doing so it had lost its power over me. It was my hope that, opposite to that truly pitiful Gollum, the loss of my prized ring would empower and embolden others. And if not (even Gollum said, "They do not see what lies ahead"), I still do not think it was a mistake. For the truth will out, and better it is to be spoken first by me rather than about me. It has a marginally better chance of sustaining a semblance of reality that way, and I am less likely to be described as nearing my grave or courageously battling some crushing medical monster.
The tremor along my right side was more noticeable as I drove home that night. I wondered whether it was the disease inching along its inevitable path, or a physical manifestation of the regret that sometimes follows having told one's secret.
Down the creaky wooden stairs and across the rough basement floor, past the roaring of the sawdust fed furnace, the fruit room waited in silence for me. It was in the far corner, where my approaching frame made only dim shadows on the door as I walked away from the single stairway light. It was called the fruit room because it stored our annual supply of home-canned peaches, apricots, pears and cherries that were sealed in Mason jars in the summer to stock the shelves for the barren months to come. It also contained all our homemade jams and a bin with potatoes that grew sprouts from their "eyes" during the winter months. It was an unheated and damp 8-foot by 8-foot room, rough 2x4 walls, with a vent leading to the outside. Spiders were the visible denizens of that coffin-like room. But most disturbing to me as a young boy was its deathly darkness. There was a bare light bulb hanging in the middle of the room with a pull-string switch but it could not be pulled without letting go of the spring-hinged door, thus plunging the room into total, if momentary, darkness. In that moment I would be alone in the dank and earthy inkiness. What was there that I could not see? “Some thing or person” my hyperactive imagination shouted inside my head. Then the goose pimples and shivers took over, crawling over me as I approached the room, a precursor of things to come. I regularly prayed when I was assigned by my Dad to make the trip downstairs for a jar of something. But it was the exit that had me most concerned. I would grab the string when leaving and lean towards the door handle, just out of reach. Then, springing through the opening, I would flee the unknown terror to reach the stairs and its welcoming light, the pull-string left snapping and swinging as if to escape the place too. I was afraid of the dark, or more precisely what might be lurking there ready to do me harm.
What am I afraid of now? Truthfully answering this question and admitting that I have fears is one thing.
PD has an insidious strategy of occupying the fruit room of my life. It is a dark and inscrutable guessing place that I do not wish to visit. What is in there? My initial response is, "Nothing good”. Only decreasing mobility, increasing shaking, painful intermittent cramping, and a litany of other strange marauders threatening to creep into my body under cover of darkness.
It is the PD "fruit room" that presents what I expect, based on my experience to date, is the worst part of the disease. Not knowing what is next or how fast my symptoms may eat away at my definition of normal.
How do we deal with our fears; our fruit rooms?
First, as I learned (rather slowly) when I was a boy, I need to find courage. Recently, my oldest son, Jordan, who saw active duty as a US Navy medic serving with the Marines, shared how fear was necessary for courage. A soldier without fear is either totally naive (and unprepared) or out of touch with reality (and dangerous). To be any help in any battle one must fight first their fear, then the enemy. And it is an ongoing battle of facing one's fears.
Second, it may be necessary at times to take someone else along. Two people entering the fruit room usually vastly reduce any paralyzing effect of making the journey there. Sharing fear requires that we first identify it clearly and then admit its powerful hold, its semi-permanent presence in your thoughts.
Lastly, we can shed new light on the darkness and its occupant, THE UNKNOWN. Educating ourselves about our feared disease may not be an encouraging task, and it may illuminate the scariness that really did reside in that windowless room. But we can deal with what we see, or at least acknowledge it.
And let us not forget that there are discoveries and sweet rewards in the fruit room. There are treasures we can share with others as we explore and expose the secrets of that scary place. And we will be the better for facing our fears.
Renae and I have the miraculous privilege of having adopted 3 children within weeks of their births. Today that would be a rarity indeed. And while they each may bear the mysterious genetic fingerprints of their unknown birth parents, the specter of Parkinson's is not embedded in their psyche or their physiology, as it is mine.
Why did I "get" Parkinson’s Disease? Anyone in similar circumstances would ask the same nagging question. “Why me?” It is one of the most common cries of human existence and experience. This are really several questions in one, each rooted in a different dimension of human curiosity: medical science, psychology and spiritual. As I think about it, maybe that two-word sentence is really the existentially defining question for us all. However, lest this humble blog become a treatise of too significant scope, it is only the first one that will concern me in this posting.
Of course, if those pathologists who study this fairly common disease (6 – 8 million patients worldwide, approx. 1 in 500) actually knew the answer to this haunting question, we would expect that the cure would be inevitable and imminent. And millions of us who live with PD would be celebrating like never before. But, like so many diseases, the answer seems to be complex. It is called “idiopathic”, which I might add is not the merger of ‘idiot’ and ‘pathetic’. It is the medical profession’s word for “cause unknown”. Despite having been identified by Dr. James Parkinson nearly a century ago (1817), only recently have significant strides been taken in the scientific world of “why”.
It appears that the root cause of PD is most likely an enigmatic equation of genetic predisposition/mutation and environmental event/exposure. At least in my case these two factors seem to collide like two meteors bearing my name, with the fallout being my own personal brand of PD. It would seem that there is some genetic defect that has found its way down the circuitous chain of my father’s ancestry, although this is speculation at best. On top of that, I grew up (to extent I have done so) in the orchards of the Coldstream Valley, outside Vernon, BC, where in my childhood was spent playing among the pesticides that were sprayed naively into the Spring air for all to inhale.
PD in my case seems to be like lung cancer to a person prewired to have a special sensitivity to second hand smoke. It resulted from the body’s genetic predisposition to easy absorption of toxins. At least that is my best guess.
So what if you are the child of a PD person? Sometimes it must feel like being tied to the railroad tracks with the train just round the corner.
First, as I suggested previously in my Grappling With The Ghost of 82 posting, you can’t dwell on the future or it will traumatize you. Second, the odds are still stacked heavily against hearing a verdict of ‘positively Parkinson’s’. Even if the genetic and environmental stars align, chances are you will not have PD. And thirdly, even if the PD diagnosis comes, you can live with this challenge, like so many others do. It could be worse, right? We can accept without fear the perils that may present themselves in the days or years ahead, and still live fully productive and even joyful lives. Is there a better alternative?
Below is a 4 generations photo: my father-in-law, Louie, my son, Adam, and me with my grandson, Patrick.
When I was young boy, a half century ago now, I would stand at the fulcrum of the teeter-totter trying to achieve that perfect perpendicular pose. First one end and then the other would dip as I shifted my weight back and forth to counterbalance. Sometimes I would slip and one seesaw seat with its metal T-bar handle would pound the ground. This would add to the hole that had been inadvertently dug by children who had clung to that end as it dropped from its apex with the bone-jarring crash that usually resulted from the occupant of the opposite end inconveniently, or maliciously, deserting his or her seat. Lessons learned: (1)the law of gravity can produce dramatic and, in some cases, tear-producing consequences; and (2) those on whom we count to provide balance sometimes vacate their designated roles. Both lessons have life-long impact. But that is not what I remembered best.
I could never get the green painted two-by-twelve to stay perfectly still. Sometimes the board would temporarily allow me to stand, not breathing, arms crossed and motionless. But mostly I was constantly having to shift my weight to correct for the wind, a mistimed breath, the unhelpful push of a playground acquaintance or just my own inner lack of equilibrium. Despite my best intentions and disciplined concentration (if I was capable of that then), perfect balance was unachievable for more than a very short time.
Such is life. And more so it seems for those with Parkinson's.
Our daily existence is often jammed with conflicting priorities all clamouring for more. Work, family, friends, community, church, sports and leisurely past times compete, often aggressively, for our time, energy and money. With PD, the balancing of these demands/options can reach epic proportions.
Well, first there is the restless sleep, which is rarely enjoyed uninterrupted. So a PD person often starts the day tired. Then there is getting up earlier so that you have the necessary time to actually get moving. While I can jump out of bed relatively effortlessly, other PD people need their medications to take effect before they can walk. And speaking about meds, additional time to sort and swallow them without losing them down the drain due to your fumbling fingers can be a frustration. It takes me about 15 minutes more to get ready in the morning just due to "inefficiencies" in morning ablutions. All round, those of us with PD do life slower, which makes the goal of 'balancing life's priorities' (to quote the final entry of our firm's Core Values) more difficult.
But I am learning some things about balance. Like on a teeter totter, balance is not a static state, it is a dynamic one. It requires constant readjustment, sometimes making minor corrections, sometimes major. Just when you think you have it something comes along and sends 'one end' crashing into that 'hole'. It is the relentless search for the balance that actually allows us to achieve it, or nearly. For those of us facing the ever-changing symptoms of PD, we must modify our idea of balance and recognise the need to recalibrate our expectations. Patience and a willingness to go slower in the ever faster paced world we call home, that is what I am trying to learn.
So I say, give yourself a break if you can't stand stationary for long at the midpoint of the seesaw. No one else can either.
It was a dark and fearsome thing. Lurking, haunting, it hid often in the shadows, emerging only when clouds gathered on the horizon; near or far. It seemed to me it was waiting for something; an event, a person, or just time to pass. I feared it would pounce and smother me with its heavy, airless robes, for I knew it was me that it hunted. No one else distracted it from its prey.
I had noticed it first out of the corner of my eye a few years ago as a shadow stalking me on occasions when I was lost in thought, far away. It sent a shiver down my back and I felt a moment of cold. But it would quickly scurry off as I became distracted with all that was happening around me. It seemed less intent, less focused back then. But steadily as the months passed I found its hooded gaze slowly burning holes through me, as if I were a paper cup full of hot coals. It was only a matter of time, more frequently as life wore on, before it shuffled into view. I began recognizing its seemingly rightful place over my right shoulder that ached whenever it was there.
And now it resides in the dark corners I encounter along my path most days, rarely out of sight for long. And I tremble and get stiff partly it seems in reaction to its searing gaze as it crouches, leaving me wondering when it will come for me.
It reminds me of Charles Dickens' "A Christmas Carol". I always feared the ghost of Christmas Future the most. The ghost of Christmas Past was simply a tangle of memories, crisp and curled like cold bacon long since abandoned. And the ghost of Christmas Present was too immediate and familiar to frighten me for long. But that ghost of Christmas Future half crept, half floated; first slow, then with the speed of a shooting star as it spoke of serious things to come. Every time I see the movie I realize that there is a reason we should not know the future; we could not bear it. We were meant to live one day at a time, each one separated by a night's repose, fitful though it may be sometimes.
My personal ghost of Christmas Future flashes pictures of me like my father would have looked at 82. It is not an appealing advertisement for some magic panacea or pill, or a vision of me vacationing in the south of France in a villa by the sea where I walk long miles by the shore. No, the snapshots reveal a darker scene and the ghost speaks, "This may be so.".
So I fight the spectre and its portrayal of my supposed future at 82 (or sooner). I demand that it not occupy my present, and if it does it must be clothed in bright colors of hope and faith, enjoying with me the day I have been given. The Bible (Matthew 6:34) quotes Jesus as saying, "Do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own." The future truly is an apparition. I am not my father and will not, in all likelihood, follow a similar path to the one he walked.
I must grapple with the ghost of 82 by fully investing in each day. As Jim Elliot, the missionary who, at 29, literally gave his life to the Aucas in the far reaches of the Amazon, said, "Wherever you are, be all there."
I say we must banish the ghost and his pale and poisoned prophesies of tomorrow. We have today to embrace and live out; positively Parkinson's.
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.
The whole room went silent and looked up as the blonde virtually exploded through the double doors leading into the lounge. She could not help but demand complete attention, intentionally or not. Her mischievous hazel eyes immediately assessed the occupants. I was delighted, if a little nervous, as she literally ran to me with arms outstretched, her long hair tousled and bouncing, mimicking her obviously carefree demeanor. Her smile was broad and genuine, and instantly took over her whole face and spread infectiously to all faces in the room. The petite beauty literally launched herself at my neck from several feet away. The hug was genuine, uninhibited by the sudden silence and stares being focused on her affectionate display. And with seemingly perfect timing the coquettish kiss that followed was a signal that the introductory affection was over and that she would be satisfied with my arms being loosely circled around her. Those in the room could return to their pockets of conversation, looking over at us occasionally to reassess her placement on my lap.
But the loud hum of conversations had not resumed long when a second, somewhat taller and more reserved, but just as beautiful, young lady entered the room. She was not as unabashedly boisterous but her entry was noticed by everyone. Her intelligent green/brown eyes signaled that she had purposely delayed her entry to avoid a competition of brashness with which she would not feel comfortable. Our eyes met and I was immediately embarrassed by the territory commandeered by the blonde in my arms. But the brunette did not let the apparently exclusive embrace dissuade her as she strode through the crowd and squeezed in close, placing her arms around my neck with obviously sincere affection. The competition for my attention seemed good natured and neither demanded exclusivity. They seemed used to vying with each other in their own distinct style. I felt both comforted and conflicted, but I was beaming inside and out to be the focus of attention of these much younger females.
While not immediately obvious, studied observation would have confirmed that the young ladies were sisters. Hailie, the blonde, is 6, and Taylor, her sister, is 9. They are the children of my nephew, Jesse, and his wife, Crystal, and we have a special bond that has grown since they were infants.
The occasion was a family gathering at Ocean Shores, a resort area on the Olympic Peninsula of Washington State. The 17 of us (4 generations) used the large lounge at the beach front condo complex for games, visiting, some meals and just hanging out. When the girls were around they were often next to, on, being chased by or wrestling with, me. And I loved it. And them.
It was in one of the more sedate moments that my grand-nieces (I think that's right) almost simultaneously inquired, "Are you cold Uncle Bob? Why are you shaking?". It was a logical question for two young girls unfamiliar with disability and no sophisticated diplomacy (thank goodness). Just unashamed concern and curiosity.
It is, at least to some extent, what many others wonder when they noticed my tremor. It is often the more observant that types I notice watching my hands and their face gets that "Hmmm...wonder why his hand is shaking?" This was the first time someone had asked me so naively about my PD symptoms. A very few others have asked me straight out if I had Parkinson's, but usually it has been someone who knew about the disease and spotted the telltale signs.
It is one thing to answer two adoring and adorable little girls, but what about adults? Seems to me that the response is the same. Can we who have this sooner-or-later obvious disease remain unashamed and direct in our response? As I have said before, it seems that the more comfortable we are with our disability the more comfortable others will be with it. Nothing like kids to teach how to explain what we would rather not have to.
Whether a child or adult, how to discuss your diagnosis is always topical.
The vice grips tightened and the serrated pincers dug deeply through the flesh to the bone. The everyday tool, a cross between pliers and a screw clamp, became an instrument of torture. Applied to the big toe of the right foot, its jaws increased the pressure from a gentle squeeze to a numbing crushing force. The toe curled under in response. Slowly the whole body and everything else was forgotten as the discomfort increased to a radiating pain. First the remainder of the foot, then the calf and knee, stiffened in sympathy. But like muscles always do when left clenched too long, they began to tremble and could not stop. Trying to get the vibration to stop by willing the right leg to relax proved futile. It only refocused attention on the tightening muscles in the foot. It too mimicked a steady oscillation as the logical extension of the leg's reaction to the pain. And so the cycle continued from toe up to leg, back to foot, which resulted in a rhythmic motion on the gas pedal.
Parkinson's has an extremely varied menu of diverse and strange symptoms. Unfortunately, knowing the menu does not allow one to make the meal choices. The establishment delivers each course unannounced. Portion size and speed of delivery are almost totally unpredictable and, for the most part, out of control of the customer. The total meal is usually a pot pourri of undesirable physical, psychological and emotional items dished out without a set sequence or severity.
Dystonia was being served up Friday as we drove towards the Olympic Peninsula for a weekend with the family. It is the contortion and cramping of muscles resulting from mixed up neurological messages. My big toe on my right foot is the recipient of the term. Mild in my case, but unmistakable. Have I over-dramatized the introduction to today's post above? Certainly, but someday it may not be. And for some the description above would be understated.
Driving a car (not motorcycle, thank goodness!) brings on the mild dystonia in my right toe. I used to enjoy road trips, but now they represent a reminder of a PD symptom that may be painful in the future.
So how do you handle pain? I don't manage it well. But I am learning, and it is a valuable lesson. Pain is often the ultimate teacher and tests one's priorities like little else. It is an experience we cannot really share. Complaining accomplishes little and sends the wrong message.
My own attempts come down to first trying not to fight it. In the case of dystonia, relaxing is the only actual remedy. Rest is the second antidote. Third, I try to reorient my attention, distract myself with music, a game, discussion or whatever. Finally, I remember that many others live with greater pain and I need to keep away from self-pity. Feeling sorry for yourself is the real prison guard and torturer. By focusing on the big picture takes our eyes off of ourselves. We can prevail over pain. Positively.
Shortly after my PD diagnosis, January 19, 2006, I was attending a New Diagnosis Day sponsored by the Parkinson's Society of British Columbia (a very helpful organization providing very useful support and information - next New Diagnosis Day is October 3, 2009). A speaker told 50 or so eager but frightened attendees that exercising one's mind was an important priority in combating the cognitive impairment potential of the disease. WHAT! You mean there is more than the potential crippling stiffness, uncontrolled shaking, loss of balance and depression? We have impairment of mental functioning to look forward to as well!?
Well you can imagine how I sat up when this lightning bolt struck. For someone who makes his living with his brain, the idea of physical disability is bearable. But early cognitive failure? That had me starting to count from 100 backwards immediately.
As a "present-minded" person my memory has never been superb, and my ability to take notes had gone straight downhill. So I knew that being able to remember things would become even more crucial, and difficult. I found myself checking for the onset of mental lapses, as I did for some of the other symptoms of this ever-advancing PD blight. Forgetting someones name sent me into a quiet panic as I imagined the worse. But this led me to hone right in on the advice I heard from that speaker.
Of course, I thought the worst, despite the reassuring statistics. Most of the 30% of PD patients who experience cognitive impairment develop PD more seriously and quickly in their old age rather than having been diagnosed with "young onset". Young onset is defined roughly as around 50 years of age at onset (I'm "only" 57 now so I must have been "young" at onset!). Old age can have a mind-dimming affect too if you are not careful. But regardless, I decided I wasn't waiting to find out if I was a statistical anomaly.
So I started doing crosswords and sudokus and other word games and mental gymnastics with the determination of a chain smoker trying to light up in a rain storm. Sometimes I was more tired after a day of my normal "head" work supplemented by my "mental exercises" than I was from my physical work out. Typically, I was overdoing this mental calisthenics routine.
But one benefit of this addiction was the discovery of Scrabble on Facebook (yes, my kids suggested I sign up so that I could keep in touch with their social networking circles). Scrabble was a game we played often when growing up, along with almost any card or board game imaginable, and I was an avid competitor. For me the game was the fun part, and winning, though enjoyable, was secondary. And who became my first online-Scrabble opponent: my Mom (yes, at 75 her grandkids got her hooked on Facebook as the easiest way to communicate with them).
Now there is a problem with this scenario. Do you try hard to win to assuage your nagging doubt about your own mental faculties being in tact? Or do you let your mother win out of respect for your elders and a desire to encourage your mother? Forgive me, but I chose the former. I could not throw a game. Yes, she won sometimes, but there was always the next game.
So let me encourage you to beat your mother...I mean...play games...I mean...challenge yourself with some mental push ups. Start an easy crossword, sudoku or other solve-it game or puzzle and work your way up to harder ones. You will find it gratifyingly easy to convince yourself how bright you are. And a Scrabble match, even in your pajamas, is as close as your nearest computer.
There was a flash of fur as the wide-eyed rabbit raced to avoid the claws of the pursuing cat. 'Socks', still a kitten really, was the neighbourhood's white-pawed hunter, and had just scared up the hapless hare from the nearby field as I was leaving to meet my trainer at the gym. For the feline it was not a particularly important pursuit, but for the bunny it was a potentially deadly game, and for a few seconds I thought it was over. But the freaked out rabbit veered between my front tires and Socks wisely chose to avoid the unhealthy course. His prey lived to see another sunrise.
On the remainder of the pre-dawn drive to my dreaded work out I kept replaying that four-legged chase scene that had taken place before my sleep-deprived eyes. Wasn't that a little like me (the rabbit) exercising my less than cooperative body to stay ahead of the pursuing Parkinson's (the cat)? If I don't take the stalking disease seriously now, while it is still mostly a practical inconvenience, how will I be able to win the race when the 'kitten' becomes larger, faster and more aggressive? It's enough to get me motivated to meet Shelley at least once a week so that she can "encourage" me to run longer, lift more weight and stretch farther. You see, I need the constant reminder and accountability she provides. Despite the way it feels sometimes, she is not killing me, but preparing me to compete in a very serious race; one in which I must stay ahead of the pursuer.
Exercise may not be neuroprotective, but it is the one thing I can do to fight back. Drugs may be necessary, but they are hardly the sole weapon, or even the best, with which to fight the battle. Everything I have read about PD tells me exercise is a must. So despite a busy life and the twinge of guilt for arriving a little later at work a couple days a week, I will persevere. If I fall off the wellness wagon I know Shelley will ensure I get back on.
I know not every PD person can have a personal trainer and a gym membership, but we can all do what we can to try and stay out of the clutches of the worst part of the ever more demanding disease we face. Find an exercise buddy. Walk if that is what you can do. But do something. Let's all fight back and maybe we can stay ahead of the cat for a while at least.
Vietnamese food is one of my favourites. I am especially fond of coconut curry chicken. But a mutual love of the cuisine was not the reason "Big Jerry" (he prefers that over Big Mike) and I were meeting. We are both lawyers with Parkinson's disease. In fact, we found ourselves laughing about how much we had in common. He was diagnosed younger (he is more than 10 years my junior), and after I was told I was positively Parkinson's. We don't have the same types of law practices. But we journey along together on this challenging obstacle course called life with PD. Somehow sharing the fears and the funny stuff makes the whole thing a little more manageable. Even our wives benefit from this friendship as the four of us get together for a nice meal every few months.
For some the bigger support group serves the purpose. For me, at least at this point in time, a few friends of the PD persuasion, like Jerry and Patrick, are a great comfort.
Of course there can be discomforting risks of meeting with other PD people. I remember my first encounter with a fellow PD person. The first thing she said as she struggled into the coffee shop, sat down and focused on my face was, "Oh, I see you can still smile.". She then launched into a litany of symptoms that she prophesied would soon befall me. It was like being pelted by punches, and I inwardly groaned at the images of me in some future state of pathetic incapacity.
Life with PD can be a lonely affair. Sometimes we feel anything but socially acceptable. People may avoid us like we are carriers of the H1N1 flu pandemic. But for me it is critical to silence those inner antisocial hecklers, like Waldorf and Statler, the Muppet characters spewing negative comments from the balcony.
To listen to them is to let the PD win, defining you as not acceptable in social environments. To be accepted by others we must first accept ourselves. And learning this with the encouragement of PD friends has been enormously encouraging to me.
The Lone Ranger did not have PD. But even so, he had Tonto to stand by him and encourage him. He wasn't the "Lone" Ranger at all.
Diagnosed with Parkinson's Disease in 2006, I was 53. I currently serve as the President of Trinity Western University, of which I am an alumnus. I remain engaged as a lawyer who practices as general counsel to a wide variety of clients, primarily in the Vancouver region of British Columbia, Canada.
Married for 40+ years (to the same loving and long-suffering woman), with 3 grown children, and one grandson. Besides my wife and family, my passion is living the adventure called life as a God-given gift, which includes motorcycle riding, scuba-diving, blogging, Scrabble and looking for the treasure hidden in each day.