Going Underground

Sometimes it is best to go underground. For instance, when London weather devils decide to punish the 'bangers and mash' eaters with March-ending daylong cloudbursts, you take to the underground even if it is only from Victoria Station to Westminster. Despite yesterday’s very wise purchase of chic designer outerwear at Bromley’s Monday madness sales, we were warmer but not prepared for a typhoon that struck as we exited the train station. We were well aware that during the WW II bombing of London folks retreated to the underground, so we thought there was no safer place to hide from the liquid bomblets that fell from the merciless skies. It was the smart thing to do, especially given the cold that was rapidly conquering every square inch of my skull.

This decision proved especially prophetic given we were headed to Churchill’s Cabinet War Rooms near one end of Whitehall (a street and not a building), just off Great George Street (not to be confused with nearby Little George Street). It was, of course, underground. From 1941 – 1944 it was the nerve centre of the British Second World War effort. Despite its importance, it was relatively small. It was secret. Few people were involved in the most delicate bits of war business. But there were enough of the right people to plot the seemingly impossible defence of a small, vulnerable island floating rather brashly within eyeshot of enemy-occupied Europe (although that would require a clear day, which I estimate occurs once every Royal wedding). It was a superb example of what a few defiant souls could do when given tough-talking encouragement in words. Since this blog has previously drawn wisdom from the wily and witty wartime leader of this webfoot nation, I found myself thinking of the underground itself. There time was spent in safety, planning and marking the gains and losses of the war that threatened the United Kingdom and probably much more.

I found a message in this for those of us facing an enemy like Parkinson’s disease, or even the inclement conditions that confront us from time to time. Sometimes it is better to go underground rather than stand shaking our fists at the sky and the damage that rains down on us. Sometimes it is wise to go underground to plan and measure out the war we wage, surrounding ourselves with those who understand (like we did at dinner tonight with the Stamfords). We can’t stay underground anymore than you would pitch a tent on platform 6 at Charing Cross, or anymore than Churchill stayed in his underground bunker (he slept there only three nights). There is living to do and a war to be fought. Just the same, sometimes it is smart to go underground.

Back to Bromley for Miracle Monday

The BBC’s promise of rain was fulfilled as we left the Cucina after a late breakfast of toast, thin sliced Emmental cheese and coffee, promoted the plan to return to Bromley, this time to buy warmer clothes. The place to go for decent clothes at low cost was apparently Primark. We dutifully followed the recommendation our English hosts and were not disappointed.

I found a thick grey fleece that fit perfectly well before my internal circadian shopping alarm went off (permanently set for 15 minutes) and marveled at the £8 price tag (making Value Village look expensive). Wow, I actually felt the thrill of bagging a bargain. But that’s not all. At the till the checkout clerk, whom I am sure was trying to speak her native tongue, English, but was unintelligible without considerable guesswork and sign language, took a further 50% off. That made the fine looking fleece coat cost slightly over $6 Canadian (or American, since we seem to have caught up to the US buck). When I asked why the further discount, thinking maybe she was feeling sorry for the trembling foreigner in front of her and extending Parkinson’s month special to me early, she simply said, “Because it’s Monday.” Renae experienced a similar bonanza when she walked away wearing a winter coat complete with faux-fur lined hood for a Monday sale trifling £7 (under $11). Do they celebrate Mondays differently in the UK?

Feeling like conquerors, we were ready for an early supper and, upon asking some random fellow on the street who displayed no obvious culinary expertise and proved it with his suggestion, “The Slug and Lettuce”. Dismissive at first, and not asking for an alternative for fear of sounding ungrateful or eliciting something worse like, “Gizzards and Greens”, we figured it was either brash marketing (similar to some wine labels lately) or confidence in its fare. We tried to and found it tasty indeed, although we had been counting on escargot, which was not on the menu. The surprise came at the end of the meal. You guessed it, with not a sign or menu to be seen, the server presented the bill at the end of the meal only to toss the words over her retreating shoulder, “Oh, by the way, it’s half price Monday.” Amazing!

One more amazing Monday story. Remember the hung-over Foster’s lover I met yesterday at the bus stop? I saw him three times today in three different locations over a space of more than 3 hours. I think he is beginning to view me as an undercover agent with a case of mistaken identity.

Miraculous Monday it was, despite the endless grey rain that escorted us back to Farnborough, glad of our new warm coats, which together cost 50% of our ½ price supper.

The Bus to Bromley

Despite the plexiglass wall and roof, the bus stop "shelter" was windswept and seemed to preserve the damp cold.  It seeped through each of the four layers of clothing I was wearing as I waited, uncertain if I was on the right side of the street to catch the #358 to Bromley.  With cars parked on both sides of the road pointed both ways, it was confusing.  Perhap my indecision was due to fatigue from last night's short episodes of sleep, interupted by "commercials" formed by questions such as, "Where am I?  What time is it?  Shouldn't I be somewhere soon?"  Even at noon, today seemed to start too soon.  Maybe the cold had something to do with the cognitive lethargy.

It was after a brisk and, thankfully, short walk for two cafe au laits from the cornerr 'Cucina de Cafe' that I realized I had seriously over-estimated the warmth of southern England in late March.  It was warmer at home in Canada, the supposed "Frozen North".  So when the time came to take the bus to Bromley to pick up the things 'we' had forgotten (items not to be mentioned here for fear of retribution) I bundled up as best I could.  I could have used a parka.  I looked as out of place among the other Sunday shoppers as a Speedo-clad swimmer at an icefishing contest.  The bus was late.  And by the time I boarded my teeth were chattering and my walk resembled the admittedly hungover man ahead of me.  His excuse he had told me was running out of Foster's last night and being foced to imbibe White Lightning, or something that sounded like that, only slurred.  My excuse remained unnamed, thinking that despite Dr. Parkinson being British, the disease with his name seemed strangely foreign in his homeland. 

The bus driver reasured me of the correctness of my choice of direction and I sat down next to the other shaky bus rider ahead of me.  He asked lots of questions, but had some difficulty answering mine like, "Where do I get off for shops that sell _________?"  I guessed instead and found myself near an appropriate array of stores. Ducking into one I soon found the missing bits "we" left behind at home and went searching for the bus stop to wait with a long line of Sunday #358 bus riders headed home.

The trip, door-to-door, took 3 hours.  15 minutes to shop, 30 minutes total on the bus, and over two hours wondering whether people with Parkinson's all drive cars to avoid the amplification of tremours due to the cold weather zones surrounding bus stops.

On Strike or Vacation

I never thought I would be relieved to be sitting sardine-like, 10 abreast in a fully loaded Boeing 747. But despite leaving 20 minutes late I was content. We were on our way, the last British Airways flight out of Vancouver to London Heathrow before the impending strike. I could stop holding my breath and chill a little. We were in the air just a few hours before the midnight deadline when planes would apparently be grounded.

In a way I felt like I was going on strike...for three weeks anyway...unless BA really goes to war and holds out longer than expected (I am secretly hoping). Work was left behind in a flurry of delegation and inevitable last minute details. What would I do without a supportive, willing and even long suffering team to make this vacation break possible? Clothes and books, and my well-traveled laptop, had been hurriedly packed after a last minute haircut. Despite fearing that essential things, like tickets, passports or my universal plug-in, were being left behind or necessary instructions, like where we were going, scribbled too illegibly, the European adventure had begun. Nothing would be normal for 22 days, and I was game for that. Despite leaving behind the work, with my "gone fishin'" sign hung electronically on my email in box, I had a slight guilt pang or two when I thought of tasks left with my team-mates to complete, but I knew that intermittently recurrent feeling would fade over time. Of course, I would face the barrage of return 'favours' when I entered the office door April 19, but for now I was flying high on my way to the "Old Country", and I felt free.

Even my ever-present tremour seemed to sense we were on vacation as it subsided after settling into seat 35G. I was asleep before we left the ground, the ever-frustrating safety lecture lost on me without a concern for missing it.  However, that proved to be a catnap and I slept little after that. 
Some would have called the "red-eye" 8 plus hours in a winged, wide body jet a boring part of the journey; an unimpressive beginning to an adventure. But for me the predictable and uneventful trip was a perfect start. Rest, nothing to worry about except getting a little sleep.  And not to forget avoiding the loss of a knee cap to a speeding aluminum service cart driven by a flight attendant angry about having to serve picket duty shortly after touching down.  I tried to get pictures but it is apparently "contrary to BA policy to photograph" grumpy flight attendants who treat all overtures of friendliness as terrorist plots.  I think they may have wanted to spend more time with simulating BA plane dismemberment in the lounge.

Now I must admit to modest posterior pain after a night of nothing but naps sitting upright (or almost) on a seat "cushion" that must have been used by Amelia Earhart and had long since lost any vertical resistance. But it was ameliorated by the novel experience of programing the on demand sound system in the seatback to allow me my own unique potpourri playlist of tunes from BA's eclectic audio librairy. So I napped, sort of, to the varied sounds of Beethoven's Ninth Symphony, and his great great nephew, Michael Buble, The Carpenters, Susan Boyle, George Benson and Carrie Underwood (Nirvana and Lady Gaga didn't make the cut). Of course, I was somewhat stiffer when I was awakened each time, but that could have been due to missing my Parkinson's meds at night and again in the morning.

 
We arrived safely, if a little late, to find the assigned gate taken and none other available causing 45 minute wait (I figured some union "work to rule" strategy) until a bus could be brought around to pick us up.  So my cousin (actually my mother's father's sister's daughter's son) who had kindly offered to pick us up had to wait an extra hour or more.  After getting settled in his parents' home (Mick and Jean - they are away until Monday) in Farnborough, Kent, we wandered along the village High Street and went into the only sit down dinner restaurant open.  We were the sole "eat in" patrons.  Despite the questionable absence of guests, we guessed things would heat up given the ready attentiveness of 6 servers for 15 tables (which proved accurate).  The Indian cuisine (Renae's first try) was excellent and hearty.
 
Well, it's almost 10 PM here (3 PM at home) and we "Spring Forward" here on the Greenwich Meridian tonight, thereby losing another hour of sleep, so time to take my meds and prepare for Day 2 of the European Adventure.

Parkinson's and the Peril of Pride

At 90 years old Gwendolyn should have been deserving of great admiration, even if just for outliving her husband, Arthur, most of her friends and all of her siblings. But in her unbending determination to live "independently", her greatest strength became her greatest weakness (as it often does).

She had started falling several years ago; each time without any apparent reason other than the loss of balance caused by Parkinson's. Each time there was greater bruising and more significant risk of breaking the brittle bones that outlined the frame of her stooped body. But she refused to use her walker most of the time. She seemed to prefer shuffling along in her slippers (aptly named) and, when slips occurred, clinging to the nearest unstable wall of her yesteryear house. She desperately wanted to believe that she still had control over her body, despite its uncooperative convulsing and "freezing" from time to time due to her PD. She was convinced it was her body that allowed her to reign over her tiny, and like her often inexplicably too warm or too cold, personal domain. For it was the home she had lived in the last 55 years of her life. There, on March 26 each year, she continued to celebrate her wedding anniversary for the past 20 years, with Arthur occupying only her memories and imagination rather than the overstuffed corduroy chair in the corner under the burned out reading lamp. She would not accept that her slowly dilapidating home and less slowly degenerating body no longer afforded her the freedom she had once known. And refusing help from others who could reclaim or retain some of that freedom for her had converted her laudable courage and determination into irrational, and even hazardous, stubbornness and pride.

It was pride, and not forgetfulness, that dictated she would not be wearing her emergency "call" button necklace, when she fell last month, resulting in her spending several afternoon hours on her bedroom floor, unable to move, waiting for someone to arrive and help her onto her bed only a matter of a few feet away. Given the frequency that her children called upon her each day, this proved not as perilous as it could have been. However, the latest fall had occurred during a midnight trip to the bathroom. While resting on the edge of the tub, having felt a little lightheaded, she fell backwards into the porcelain prison where she remained a bleeding and helpless captive, shivering through the night out of fear and and its affect on her tremours. In the morning, after a stay in the emergency ward of the hospital, a quickly convened family meeting unanimously concluded that, "Something had to be done".

The sad irony of this true, and oft-repeated, story is that unyielding insistence upon independence can result in loved ones feeling forced to take away the ultimate self-governance: the ability to decide. Gwendolyn's refusal to acknowledge the need for help forced her children to make the decision for her. Strange isn’t it that parents raise their children to make independent decisions so that later in life those children will make decisions for those same parents, making them quite dependent.

Hearing about Gwendolyn has made me realize that independence is mostly a myth. It strokes my ego and strengthens my pride, but it can be much more debilitating than the Parkinson's I carry in my body. Of course, there is a place of balance between "crying wolf" and bawling for help at the slightest threat, and unnecessarily sustaining harm through carelessness. Staunchly refusing needed help can be descriptive of an immature 2-year-old or a stubbornly unwise octogenarian. Learning this lesson now, before my German stubbornness becomes totally entrenched in risky habits, seems like the right thing to do. It is not giving up on living, or surrendering my autonomy; it may simply be the first steps towards honest humility and a recognition we all need help to be and remain truly independent.

Presenting the Dichotomy of Parkinson's Disease

I was caught. Pierced by both proverbial horns of a dilemma. The puncturing took place as I was exiting the Annual General Meeting of the Parkinson's Society of British Columbia. Diane Robinson, the CEO, was saying her goodbyes to the several hundred who had attended. They were in various states of ambulatory awkwardness, from motorized wheelchairs to walkers to canes to writhing with dyskinesia to limping. Each one represented a stage of PD's progress that, to put it mildly, I did not look forward to. I was the last to leave, as if marking my beginner’s place in devolution of the disease.

While discussing this blog, and the recent posting on avoiding words such as "suffering with" or "afflicted by" when describing those of us with Parkinson’s, Diane asked, "Then how do I draw attention to the need for awareness of and research funding for this terrible disease?" The question set off a chain reaction of realizations for me, like the long line of dominoes we, as children, painstakingly stood on end, perfectly spaced, only to watch them sequentially collapse, one striking the next along the snaking path we had created until none remained vertical. I could not keep my logic from collapsing.  There, prostrate, lay my arguments for a singular commitment to positivism.

Perhaps I realized what I have known all along; people with Parkinson's are faced with a conundrum. If you ignore the pain and pathos of the disease you create a falsehood, relegating the disease to virtual obscurity. It becomes, as it was before being profiled by the likes of Michael J. Fox, ignored as an old person's disease that is just part of aging. But, if you focus on the reality of the suffering, you risk communicating a desperate hopelessness that leaves depression in its wake. Truly, this represents a dichotomy.

For a few minutes I scrambled for an answer to the conundrum. Was I misguided? Should I rename the blog? Was this all my charade of denial? In my desperate attempt to be positive had I become Pollyanna-ish?

Of course, you must be saying, there can two equally valid premises (the Greek root for the word "dilemma"). Both can have their place. Like the concluding line from that old chewing gum commercial where twins are debating whether it brightens teeth or freshens breath, "Stop, you're both right!"

The solution is like a lawyer’s favourite answer to almost any question, “It depends”. PD has more than one face. Like those struggling with the daily battle, each person will describe it differently at different times. Sometimes when dyskinetic thrashing takes over there can be little doubt the disease is cruel and demoralizing, tossing its powerless victim about like a rag doll caught in the mouth of a vicious dog. At other times when toes curl upwards with distonia, or posture bends as if under some unbearable weight, even ‘painful’ is an inadequate descriptor. But those of us who have PD rarely want pity or anyone feeling sorry for us for fear that we too will feel that way. We want to be encouraged, made to laugh in the face of this adversity. Yes, we want to be honest with others so that they might understand the reality of living with Parkinson’s disease, at least to some degree. But we cannot live there, lest that reality block the sunshine from our days.

Like most things, telling folks about PD requires balance, that ever-changing dynamic state that varies with the speaker, the listener and the circumstances. The repertoire to describe must not be limited. There is room, and indeed a need, for both humour and tears, stories of defeat and victory, statistics and sincere smiles. Parkinson’s does not come in ‘one size fits all’. Nor should it be described as such.

Brick Walls

The young man limped ahead of me as he made his way to the kinesis room at the gym. He was dragging his left foot.  His left arm was crooked and did not swing naturally.  He looked far too young to have suffered a stroke but his left hand was stiff and curled inwards at the wrist. I wondered what cataclysmic event had intersected this young man's life. Ultimately curiosity overcame my fear of impropriety, and through halting breaths while doing crunches on the exercise mat near him, I asked what happened.

With slow, soft and slurred speech, Brad introduced himself and told me about how he had run a red light while text messaging on his phone. He was "T-boned" by an 18 wheeler, and did not wake up from the resulting coma for over two months. And when he did, on Christmas Eve, 2005, he was told brain damage would prevent him from walking or talking again. Yet here he was, outpacing me in his exercise regime. With a justified pride, he told me that he now lives independently, drives a car again and works out everyday. Going to the gym, feeling the miracle of his recovery, incomplete though it may be so far, is his primary source of encouragement. Brad had hit a brick wall in life at a very young age. Somehow, he crawled through it.

Ever run into a brick wall? For me, there have been a few brick walls in life, or so I thought.  In retrospect they were little more than stubby, temporary roadblocks. While these were somewhat preparatory, Parkinson's disease is my first real brick wall. It seems inevitable that most of us will run into a brick wall now and then. Ignoring that potential is like driving without insurance. We need to be prepared. What will be our response? How will we deal with the consequences of hitting it?

I acknowledge that every brick wall is different, as is everyone of us who hits one. Some of these devastating events result in seemingly total destruction, while others inexplicably barely leave a dent. Some folks respond to the damage done with resignation and defeat, while others simply dig deeper and press on.

In examining my own brick wall of PD, I have discovered a few things about myself. Not all of of them are flattering, but I have realized one seeming certainty: I cling to the positive. I cannot take the credit for that, as it must have been my parents and those who influenced me in my younger years. I confess I sometimes feel like the boy who, when shown a large pile of horse manure, excitedly shouted, "Where is my pony?"

I was touched and encouraged by author Randy Pausch who, though now dead, seems to reflect the same approach to life. He says in his book, "The Last Lecture", "Brick walls are there for a reason. They give us a chance to show how badly we want something." At first I found myself pondering what this meant to him, given that he was dying of pancreatic cancer at the time, leaving behind a wife and young family.

But inevitably I had to ask the probing and personal question, "What do I want so badly that the brick wall of Parkinson's disease cannot stop me?" This is a much tougher question than it sounds. The question is not how high, how wide or how thick is the brick wall. The real issue is what is so important in my life that the brick wall merely demonstrates the tenacity, determination, creativity and ingenuity I can employ in dealing with it. The alternatives are endless. For some, it is exploring every conceivable way around, through, over or under that brick wall. For others, it is ignoring it all together, at least as long as possible. For me, I am intrigued by the questions echoing off the brick wall. Not so much, "Why me?" Rather, I find myself constantly searching for answers to the question, "Given my brick wall, how can I best deal with it?"

Will the brick wall of Parkinson's serve as a lattice from which will hang climbing roses and clusters of grapes at the edge of a garden? Or will it stand guard over a barren prison yard of my own making?

As I left Brad, sweating and smiling among the workout gear, pushing his once immobile body through new but exciting challenges, I knew the answer. With help, my brick wall will serve as a frame around my designated patch of ground, permitting, or even promoting, all the productivity, compassion and wisdom that my garden can grow.

Stretch, Change and Transform: The Parkinson's Demand

As I am arched on my back over the exercise ball like some upside down turtle flailing for balance, my personal trainer, Angela, espouses the importance of stretching both before, after and between our workout sessions. I hate stretching. I have not been able to touch my toes for decades. My flexibility is inflexible. Sitting cross-legged on the floor is torturous. Exercising I can tolerate, as there is sort of a competition with myself to push beyond the prescribed timing and painful repetitions. But stretching is boring. It does not seem to be accomplishing anything, at least at the time (except perhaps my ability to dramatically groan and grimace). There is no adrenaline rush or elevation of endorphins to encourage me. Why am I doing this?

However, I have learned that in life, like in exercise, stretching is inevitably required if I am to make needed changes. Neither the body, nor the mind, naturally stretches to facilitate transformation. It typically requires a daily decision, diligence, self-discipline, and in my case due to weakness in those essentials, accountability to a third party. It is much easier to remain stagnant, stuck; guilt-ridden initiative giving way to inertia.

Of course, Parkinson's disease and the world around us are dynamic, constantly on the move. Change in both is inevitable. We either stretch to keep up with their demands, or admit defeat and fall victim to the debility and depression that follow.

This fact became obvious at the annual checkup with my neurologist, marking the 4th anniversary of my diagnosis. Despite the rather slow pace of my PD, it was inevitable that some change had occurred over the last 12 months. Even as the world around me had been speeding up, my physical ability was in the process of slowing down (with the notable exception of my right arm and leg, both of which seem to mark time with a fast polka tune heard only by them). This requires me to stretch, to change. It is as if I must be able to immediately react to my own disease-driven transformation, set up my own counter-insurgency terms. I must be more than an observer, more engaged than an embedded journalist reporting from behind the lines. I must be a contestant, even a warrior, making changes to combat the changes I experience. Better yet, anticipating the enemy and neutralizing its future effectiveness.

I struggle with this cruel reality: the more my disease changes my body, the more it demands that I stretch to meet those changes. The more it seeks to define me the more I must defy that definition.

How can I do this? Certainly, it is not easy at times. When the alarm rings, getting out of bed to exercise requires determination to defeat the lethargy and stiffness of the disease. When 30 years of professional momentum has me readily volunteering, "Sure I can do that.", it is difficult to realize I need to more often say "No". And when tremor and fatigue promote self-pity, it seems counterintuitive to stretch my social circle and engage others when I would rather surrender to the safety of home.

I am learning. I must stretch when I can. I must change what I can. I must transform as best I can. For it is my firm conviction that in doing so I stand the best chance of keeping pace with the demands of world around me, and the disease within me.

Lessons Learned From Parkinson's

I have misled you. The title to this post would be more accurate if it read, "Lessons I am Learning From Parkinson's". Despite my education and experience, I am a slow learner when the lessons involve change, at least when I am the one that needs to do the changing. Isn't it strange that we expect others to change instantly, saying, "They never learn!", while we so often forget our false starts and failures? Exampl: It’s March already. Anyone still on target with their New Year's resolutions?

Despite the disclaimer, let me share my personal experience with and tutoring by PD, that curious, and still largely mysterious, disease that carries the name of Dr. James Parkinson who, 195 years ago, was the first person to detail its debilitating and potentially devastating symptoms. Granted, there are others who have heard the voice of my stern teacher differently. PD is not a professor that marks its students uniformly or even fairly. We pupils with Parkinson’s are schooled on different schedules in different classes on different topics. But curiously, our grades are handed out not by Professor Parkinson's, but by ourselves, and to a lesser extent our peers and people we interact with in field studies. How well did we learn the lessons of PD? Well, unfortunately, like living itself, our final marks are given and our baccalaureate conferred only when life has breathed its last; PD is true lifelong learning.

The first, and perhaps most important, lesson I am learning is rather obvious; life gets shorter every day. At 53, when I was first diagnosed, my body was beginning to bring that lesson home without much assistance from Parkinson's. But I was resistant to its oft-repeated message. My mantra was the title of the then popular book, "Younger Next Year". Talk about misleading titles! Now I knew then that life as we know it, will be 100% fatal; we all expire. But what I didn't realize or want to acknowledge was that some aspects of living have a "best before" date. This is not to deny the Christian view of life after death, but to simply recognize that whatever our view of 'post-graduate housing', our current physical facilities and mental faculties may not remain firm for the duration. Even 24-hour fitness clubs can’t offer eternal youth.

While living in ignorance of the slowly diminishing dopamine in my brain, I was ‘driven’; mostly by things that matter much less now in the thinner atmosphere of PD. I lived with a definition of significance that included things such as being well known (hopefully for something positive like a brilliant victory in Court or a stunning result in a negotiation) or having the respect of my peers and clients. Now, despite still finding my fingers grasping in desperation those prize pursuits at times, I realize those so-called “glory days” are over. And that is not a bad thing. There are purposes much less egocentric and more fulfilling. They have forced my original, now threadbare, passions into a box of memories, stored in the attic for an occasional nostalgic peek.

Now, facing a never-dreamed-of future, I find myself consistently asking, “How can I live well with Parkinson’s?” It is not a pleading question, so much as a prayerful one. You see I feel compelled to live more intentionally. The well-worn paths I walked, mostly to my office, must become less travelled if I am to explore the uncharted Parkinsonian trails that await discovery. These new adventures may take more metal and wisdom than life’s earlier challenges. Certainly, the rewards for succeeding will be less apparent to others.  More like a satisfied smile than whoops and whistles and ‘high-fives all round’. Nonetheless, these PD lessons are exciting times, each day a chapter offering depth and breadth never before encountered.