Parkinson's, PJ and the Fair

It was not the Parkinson’s disease that caused the reaction.  Crotchety as it may sound, I just dislike county fairs. How many groomed Holsteins, decked out Morgan work horses and suckling pigs does one need to see?  How much gut-churning, barely edible, sugar-coated, deep fried lard must one ingest?  How many rip-off hawkers selling magic mops and labour-saving vegetable slicer/dicer contraptions do you need? Who really believes it is a test of a man's skill (females know better) to plunk down a succession of $5 bills to play some rigged, balloon-popping, mole-whacking or bottle-toppling game in order to "win" a too-big-to-carry-around plush toy ego trophy.  And who really needs to risk 35 seconds on a life-threatening midway ride with a name like "Corkscrew", employing excessive centrifugal force, bone-jarring lurches, and supersonic speed, all controlled by some elementary school drop-out who thinks it's funny when thrill-seekers jettison their cargo of over-priced cotton candy and grease-impregnated onion rings (as beneficial as that gastronomic purge may be)?  No, if I never have to attend another wallet-emptying, crowded, tired and tawdry fair again that would suit me just fine.

So what possible mental delusion motivated me to attend the 2011 Pacific National Exhibition, the largest fair in Western Canada?  Was it knife-wielding "carnies"?   Demonic-possession? Dopamine agonist-induced obsessive/compulsive behaviour? Or was premature dementia at work erasing those carnival-caused scars of my past?  No, it was the totally illogical, impulsive and illusory idea of a grandpa who had his grandson to himself for the day. Who would be better to introduce the lad to the garish and gawdy underbelly of entertainment?

If deep down I was hoping to cure 2 1/2 year old PJ of any desire to ever go to another fair, I was hopelessly naïve.  

He loved it! 

Starting with the livestock barns he was soon spinning, sprinting, dodging and weaving past stalls of prize heifers, coiffed sheep and sleek stallions. Next were the domesticated fowl exhibits. With the attention span of a squirrel with amnesia seeking out a misplaced stash of seeds, PJ squeezed shamelessly to the front of every crowd to catch a glimpse of some blue ribbon ducks, dozing pigeons or exotic hens. In a matter of less than 30 minutes our frenetic farm animal tour had exhausted me. Breaking out of the barns into the late afternoon sunshine we joined the human river in pursuit of alleged amusement. I had no appetite for dashing through the next building with its display of 4H handicrafts.  It became obvious that neither did my whirling Dervish of a grandson.  His eyes, staring almost straight up, were locked on the top of the Ferris Wheel.

"That one, Grandpa, let's go on that one."  Pulling my hand with the power of a small tractor he strained through the crowd with determination. The concept of lining up to buy tickets for anything was a real test of his patience, but especially when the actual process inexplicably required waiting in three line-ups: one to pay for PJ's ride pass voucher, one to get his hand stamped as evidence of payment and one to actually get on any ride. At each end of each queue he voiced an indignant complaint as if he and his entourage of one should immediately be ushered to the front like recognizable royalty. After all, we were wasting precious time shuffling along when we could be racing from ride to ride.

Of course there was a minimum height requirement that, thankfully, restricted access to most of the tummy-testing rides. I say "most" because the first ride for which we were eligible was the "Scrambler" where three benches whirled horizontally counter-clockwise while the whole machine spun clockwise on its axle.  Vaguely recalling the ride as being in the relatively tame category I succumbed to PJ's plaintiff refrain, "This one, Grandpa!"

It was different than I remember. Faster and with a force that felt like it would hurl us into the next block, I hung on to my charge. His expression was one of mixed fear and enjoyment and I prayed his lunch would remain in its proper body organ, whatever  state of digestion it was in. After a long 30 - 40 seconds of spinning we tottered our way to the exit with PJ admitting the "couch ride", as he called it, made him dizzy. Thus began the pinball-like path from the merry-go-round to the boats, to the kid-sized 4x4's guided around a neck-snapping course that mimicked an off-road experience, to the cars kids would "drive" around a track. We did them all, at least everyone that permitted him to ride, and many more than once. He refused to stop and eat (I was relieved) and the hours flew by as I enjoyed the sensory overload through the glee-filled eyes of my grandson.  Images of Pleasure Island amusement park, with Pinocchio and the wayward boys turning into donkeys, crossed my mind.

It was dark before I could convince (a.k.a., bribe) my grandson to leave the fairgrounds with the promise of ice cream.  My Parkinson's disease was making itself evident as I had grown increasingly stiff, muscle-tired and fatigued.  

The ride home was silent, except for the gentle snoring of the sleeping lad, had slumped into the corner of his car seat.  Sneaking a peek in the rear-view mirror I wondered whether he was dreaming about being buckled into another ride. The smile that had widened after each ride was still evident. It was then I realized my own cheeks were a little stiff and sore. But it was not, as I first suspected, my Parkinson's disease at work.  It was my own wide grin that looked back at me from the adjusted mirror as if to mock my smug resolve to avoid midways, sideshows and fairs. Perhaps I would go occasionally...for my grandson.

Misery Loves Company?

The small group that gathered at Evergreen Hall sat on metal stacking chairs behind plywood-topped tables placed to form a hollow square. The uncomfortable chairs with curved plywood seats and backs were not ideal for an audience I needed to engage for an hour while I spoke about "Staying Positive with Parkinson's". It was a diverse gathering of seniors, most of whom seemed to be dealing well with their PD symptoms. In fact, they seemed more concerned about my symptoms as I repeatedly attempted to refer to my speaking notes while they fluttered about as if trying to escape my shaking grip. I was offered, and gladly accepted, an upside down cardboard box to serve as my lectern.

"Why are they here?" I mused to myself. Was it just an opportunity to escape the daily routines dictated by the disease we shared? Was it to share a cookie and some coffee with a few friends and acquaintances who would not look questioningly at their shaking hands, stiff and shuffling steps or expressionless faces? Was it somehow an attempt to share, if only silently, the anger and anguish of a disease that demanded more from each of them every day? Were they here to hear a story of a fellow sufferer? Is it true that "misery loves company"?

A curious phrase, "misery loves company".  It originated from Dr. Faustus, a play from the 16th century about a man who was prepared to give up all hope by signing a pact with the devil in exchange for 24 years of living with his desires being fulfilled. The quote is from the lips of Mephistophilis, the devil's agent, in answer to the question about why Satan seeks to enlarge his kingdom. The phrase appears to mean that those who are unhappy seek to make others unhappy too. Is that true? It does seem that the older we get the more we seek to share our maladies, aches and pains; the pills we are taking, the operations undergone, the alternative medicine remedies we have tried. Are we commiserating? Are we truly seeking to drag others into a miserable hell like the clever demon attempted with Dr. Faustus?

The introduction to my presentation seemed to fit the Faustian quote. I asked, "How many of you have Parkinson's? How many of you are getting worse? How many of you have been discouraged by the disease? How many of you have been embarrassed by the symptoms?" Nearly all hands shot up after each question. No one was smiling. It was if I had reminded them of the misery they shared. There was the challenge!

“Misery” is the state of suffering, unhappiness or emotional distress.  Is that what we seek to share? Granted, there are times when self-pity, hopelessness and anguish shroud us like a dark fog. But, if we look intently, there is always encouragement, hope and purpose. While our PD may be getting worse, we can become wiser, more compassionate and patient. While depression may come knocking, we can choose to focus on the positive, the humorous, the uplifting. Despite the death of some dreams, trodden underfoot by this debilitating disease, we can discover new and heart-warming visions, a future packed with promise, and opportunities to make much-needed contributions that had been unrecognized before.

We do not need to become like Inspector Jauvert in Les Miserables.  We can refuse to be mired in misery. We can each venture with courage into the uncharted territory ahead of us, "looking for adventure and whatever comes our way".

Those dozen or so folks who gathered together were proving that Parkinson's disease has not defeated them. Their very presence encouraged me. My suspicion, as I looked in the eyes of those I barely knew, was that, in truth, misery does love company, but it is in hope that the company it keeps will dissolve the suffering state like sunshine disperses the rain.

Parkinson's is NOT Contagious

Anxiety, like acid, etched lines into the forehead of the obviously well-to-do woman sitting at the table next to ours. Her green eyes were fixed on the jerking arms and legs of the young man who had recently been seated at a table in the corner of the restaurant patio. Seemingly unable to look away, the faces of another half-dozen patrons betrayed the same mixture of fear and helplessness. Soon it seemed that everyone in the restaurant was watching the man's body as it waged a civil war, one uncooperative limb seeking to restrain another. Distracted by the obvious dyskinesia, few noticed the face of the struggling diner as he strained to hide the shame. He seemed to know that his dignity was in the process of being strangled by the stares of those who pretended to be looking at their meals. In apparent self-defense his pride seemed to take refuge in listening attentively to his female table mate. It was as if his companion was saying, "Don't worry. Just ignore them".

"I wonder what he's got, poor fellow. I hope it's not contagious” the tanned lady behind me ssaid, voicing her ignorance in too loud a whisper. She shifted position uneasily in her chair as she redirected her gaze from the unlabeled disease carrier back to her dessert. I wanted to apologize to the man for the woman's ignorance. I wanted to explain to his audience why the new dinner guest struggled to stab bits of salad on his plate and then negotiate them into his mouth. I wanted to enlighten my fellow observeers that, despite their charmed life of diamonds and dessert, it was lack of knowledge that fueled their fear, making man in the corner a "threat" to some. I wanted to tell him that I understood why he was seated on the fringe of the veranda that Californian evening. But even though we shared a diagnosis, I knew I didn't really understand; at least not yet.

Apathy and fear of the unknown can easily drive into isolation those who cannot help but be different. Parkinson's disease, unlike many other (even life-threatening) maladies, expresses itself in antisocial symptoms. The obvious rhythmic tremors of hands, arms, legs and even heads, the wooden soldier-like stiffness, frozen facial features and stooped posture all betray the brain’s loss of dopamine. While little pills can prop up our pride temporarily, they only give a short term dose of "normality" before reality returns with a new round of randomn movements.
 
But Parkinson's disease is not contagious. No one needs to panic. While daily dramas may play out in the lives of those with PD, it isn't likely to create pandemonium. It is not like the movie we saw last night, "Contagion", which portrayed a pandemic of panic. At least those of us who are "infected" need not fear passing it on through a handshake or even an errant cough.

Perhaps, all of us with Parkinson's need to brave some discomfort or embarrassment and embrace instead a new more inclusive definition of "normal". Or better yet, why don't we just replace "disabled" with "different". Perhaps we have a calling to portray Parkinson's positively. It is a disease to be understood, not pitied.

I was proud of that unknown person with Parkinson's as he staked out his place on the patio of that restaurant in Southern California. I expect it took some courage, but the longer he stayed the less attention he attracted, as if proving that, whatever onlookers believed he had, it was not contagious.

An Hour in the Shower!

Every Saturday night the galvanized steel bathtub was dragged across the linoleum floor in the kitchen to its usual central spot. The water had been heated and stood waiting in its wooden-handled, copper boiler on the wood-burning stove. After being mixed with some cold water in the tub, the swift bathing sequence began. In retrospect, I am not sure why the youngest, having the least bladder control, went first. Even then I disliked the idea of lying back in the tub to get my hair washed. There was no draining of the tub for fresh water after each bather, as we had no indoor plumbing, except for a cold water spigot in the kitchen. Hot water was added to the tub as needed until the family bath night was finished and the water emptied outside.

Perhaps that is why I never saw the attraction to taking a bath. It had never been a leisurely, relaxing activity when I was young even after no longer sharing the bath water with my whole family. I could easily do without a bathtub in the house at all. The idea of luxuriating for an hour in a bath seems like a curious custom to me. Steeping like a human teabag in tepid water, struggling to wash all available body parts and then remaining seated in the soiled water developing the wrinkles of Yoda all the while attempting to read some soon to be sodden paperback novel. Now really!

Showers have almost entirely displaced the taking of baths, at least in North America. Whether or not it uses less water may remain debatable, but showers are unarguably more convenient, faster and safer than a bath. Besides which, you stay wrinkle free in the shower.

I was thinking about the differences between them this morning when a longing to remain for an hour in the shower came over me. Just imagine standing cross-armed, the tingling, totally relaxing warm water massaging your back and neck while you ponder ideas that only seem to occur to you in the privacy of that cubicle.  Maybe it was up form of escapism from the busy day that lay ahead. But it quickly faded and responsibility took over. Given that I enjoy a very hot shower, it would drain the hot water tank, leaving angry cohabitants of my household, as well as a carbon footprint the size of the Grand Canyon. However, the idea of an hour in the shower mirage-like vanished as I realized I can't, don't, or won't take time for an hour-long drenching in the shower. Ironically, that peaceful prospect fell victim to the frenetic lifestyle in the same way as did the unhurried bath.

The frantic pace of living, like being caught in some perpetual rush hour, leaves little opportunity to pull over, turn off the motor, park for a while and just think deeply. Gaining perspective and privacy away from the maddening crowd seems too much to ask for. Even seeking after it may have largely disappeared in the onslaught of distraction as I commented recently.

Like some bygone customs that recycle through history, maybe the idea of a long, laid-back soak in the tub deserves reconsideration. Almost countercultural. Of course, I would have to forgo the book-reading, as I couldn't hold it still enough. And I suspect I would be tempted to nap in the warmth of the steamy bath. But as long as I could avoid the memories of being plunked into the soapy water of that metal bathtub in the kitchen, I think it might be enjoyable. Maybe better than an hour in the shower.

202 in 2 Years and Still Positive About Parkinson's

CCII.   Roman numerals for 202.  It seems appropriate somehow to indicate the number of posts over the past 2 years.  While on average I try to write twice a week, there has rarely been a week when I have not posted at least one time.  Lately, a jam-packed schedule has prevented my preferences from overwhelming my duties.  Life has definitely not slowed down much and maybe picked up a little as I enter the fall months.  But I am thankful for the opportunity to share and encourage, complain and explain, as well as join the worldwide community of millions of ordinary people with Parkinson's who just want to be heard and understood.

Over the past 2 years, there have been over 32,000 "hits" by 20,000 visitors who have viewed 50,000 pages to see what Positively Parkinson's is all about.  The blog is averaging between 2000 and 3000 visitors a month from everywhere.  People from Peru to Pakistan, Israel to Indonesia, Mozambique and Macau have stopped long enough to read at least one post.

But whatever others may have garnered from this amateur effort to communicate about my partnership with Parkinson's, I have gained the most.  Positively Parkinson's has allowed me, even forced me, to be transparent about living with the disease.  It focuses my attention.  It provides accountability.  It forces me to decide how I will respond to the unwanted opportunity, PD.  It compels me to look at the "thorn in my flesh" and fully examine its implications for my life.  Writing each week precludes a glib positivistic palaver, while at the same time refusing to permit self-pity to take my life prisoner. 

I am very thankful for those of you who read my pondering prose, provide encouragement and share your own lives.  I have learned from you that:

1.       If I concentrate too much on the audience I miss the mark entirely.  Trying too hard to please the reader produces the unreadable.

2.       Real life experiences communicate better than "sermons".  I suppose that is simply a corollary of "walking the talk".

3.       Alliteration is not always advisable.  Blunt is often better than beautiful.  Cleverness can camouflage the true content.

4.       I must always risk writing from the heart.  If I am not sincere I am not trustworthy.

5.       Statistics and Comments are not the true measure of value.  Encouragement of one person is easily enough to make the effort worthwhile.

6.       In the end, I must write because it is part of me.  Therapeutic, yes.  Cathartic, certainly.  Creative expression, sometimes.  Encouraging of others, my greatest aspiration.

7.       There is no end of topics, just as there is no end of things to discover in life.  Wait until you hear about my plans for 2012!

Because of all the lessons learned I fully intend to continue with Positively Parkinson's.  I am humbled by you joining in my journey.  You helped me carry my burden.  I so appreciate your hugs, phone calls, e-mails and words of reassurance.  Many times when I have felt alone, you have sent a note to convince me otherwise.

Let's make it 303!

Leaving a Legacy

She was 85, looked bewildered and paused, seemingly groping for an answer to why she did not have a will.  "I didn't think I needed one.  I don't have much to leave anyone."  I explained how dying without a will is like going away, indefinitely, and leaving your house locked without trusting a family member, neighbor or anyone with the key.  No one can get into your home without a court order.  You have not decided who should have the right to take possession of your private domain and muddle through your personal effects.  No one has been told what you want to happen if you are not there to make that decision.  You leave a mess.  Chaos, confusion and conflict are the result of the lack of instructions you leave behind.  She nodded, silently acknowledging her failure as we began to discuss the topic that feared her most, her death and what would be left behind. 

No one likes to think about dying, or about what one will leave behind.  Perhaps it is uncertainty about what lies beyond the borders of one’s brain and body.  We have no experience with anything but the lives we have lived.  Maybe it is a dread that, besides an empty spot at some dinner table, we will not be missed much.  It could be that it is just too difficult to decide among the competing interests in, and claims to, your worldly possessions.   Given those concerns, there is some, minimal I suggest, logic to postponing the process of making a will, a permanent posthumous promise.

However, on the flip side, we have to admit that we are all in the process of leaving a legacy.  We will all be remembered, at least by someone for some period of time.  There seems to be something deeply embedded in the core of who we are that craves remembrance after we are gone.  Everyone had some level longs to leave a legacy.  And that's a good thing.  It is recognition that one is accountable for how one lives.  For some there are eternal consequences, whereas for others life provides simply temporal significance.

Age, and its cohort of diminishing capacities, has a way of focusing our attention on what it will be like when we are gone.  Life increasingly becomes a matter of what was, rather than what will be.  What, if anything, will people miss about us?  What will their fondest memories of us be?  What did we start, build or accomplish that will continue or remain?  Will the deposits we made in the World Bank of Good Things have outstripped our withdrawals?  Or will we have taken from the physical world and our human community more than we contributed to them?  Will others seek to follow the footprints we leave behind or pointed the impact they have left with discussed.

Parkinson's disease has a way of putting things in stark relief.  It is a reminder that I need to consider my legacy.  It is a reminder that I need to do my will.

The Liar in My Head

"Tell the truth now", she said, trying her best to be stern. Despite my mother wagging her finger at me, or more convincingly, waving the wooden spoon, I feared the truth more than her consequences. Spontaneously, I made up a doozy of a story in the fond hope that I would be believed, thereby avoiding any painful penalty that would otherwise be visited upon my buttocks by my father’s hand or belt when he came home from work. By the age of 12, I was a consummate liar. Feigned sincerity was a specialty of mine, nurtured it seemed by a budding acting career. It was nothing particularly nefarious, just a preteen trying to avoid the reality of his bad choices or the somewhat harsh restrictions that might be imposed by overly-informed parents. I knew that lying was wrong, but did not appreciate why. It seemed perfectly justifiable at the time, in a Darwinian sort of way.

Little did I know then that my penchant for prevarication would be perfect preparation for a career that specializes in uncovering lies. Okay, okay, I hear the chorus cries, "It takes one to know one". But, lest I be anything else but candid, as a lawyer for the past 31 years, I have come to believe that the truth is as scarce as it is sacred. It is feared much more than fostered. While the temptation to give in and tell just "a little white lie" can be overwhelming, I have learned that the truth is colorblind and critically necessary. Covering up some damning evidence, twisting a tale to suit one's convenience or contorting reality until it is unrecognizable are simply unacceptable lies. And lying makes blind fools of us all.

"I solemnly swear to tell the truth, the whole truth and nothing but truth, so help me God". Despite hearing this innumerable times, I never really understood why this oath was necessary. Leaving aside the "so help me God", as most people do, would one all of a sudden tell the truth if by habit, predisposition or self-serving convenience one was not inclined to do so? My experience in the courtroom strongly suggests that lying is often much easier than telling the truth there.

Lying to ourselves, like peeking through parted fingers supposedly covering one’s eyes, would seem rather pathetic were it not such a popular pastime. Lying to others also seems to be quite acceptable, as if integrity and honesty have been thrown from truth's pulpit by popularity. The truth for many, it seems, is not an absolute at all; it is variable, malleable and circumstantial.

How did we get this way? Was it by abandoning any moral compass for fear of intolerance? Did the lies seem preferable to watching the inexplicably harsh reality of war, famine and injustice on big screens in our living rooms?. Has the skepticism nurtured by those espousing hollow truth made us cynics who lack discernment altogether? Or was it simply the gradual displacement of truth by the allurement of lies that promised happiness.

The propensity to lie finds fertile pasture in the mind of one facing Parkinson's disease. The truth seems like a daily torture chamber of creeping stiffness that feels like concrete hardening around our limbs and unstoppable tremors that threaten a full-scale bodily earthquake. Curiously, we meet this onslaught of reality by a regimen of pills that permit us to pretend we are "normal". Truth presents embarrassment, whereas we prefer addiction to the "acceptance" extended to us because of the medication we take.

How do we deal with the truth? It is rarely popular, and sometimes fatal. But consider life without the relentless pursuit of what is true. Life is truly a cabaret, a charade, a costume party and a meaningless celebration without truth. The "truth" for someone with Parkinson's disease does not paint an attractive portrait. But we can only deal with it if we face our fears and expose the lies that render us helpless.

To pursue truth in living with PD requires that I confront the liar in my head, betraying its delicate delusions, if only to myself at first. I must listen to another source. Somehow, embedded in our souls is a still, small voice that whispers, "… The truth, the whole truth and nothing but the truth…". There is freedom in that.