Order in Court – Parkinson's Disease on Trial

“Order in Court!”, the court clerk announced as the judge entered the courtroom.  Everyone rose from their seats, standing respectfully while the robed Madam Justice Daniels took her seat in the large oak and red leather chair behind the dais called the “bench”.  Legal counsel nodded at her deferentially, a poor excuse for the waist deep bow of yesteryear.  The somewhat respectful motion was returned by Judge Daniels.  Lawyers took their place at the long counsel table facing her ladyship.  The oak table was divided in the middle by a small speaking podium which was to become the focal point of the next 3 days’ argument.  Taking their cues from counsel, the interested parties in the gallery took their seats on the padded pew-like benches.  These seats were behind a sturdy wooden handrail, the “bar” that historically was meant to separate the lawyers from the public just as the “bench” separated the judge from the lawyers.  No one spoke except the court clerk who announced the case to be heard, “In the matter of… My Lady”.  There was no smile on any face.  Everyone in the courtroom knew this was serious business.  The war of words was to begin.  In the end there would be a winner and a loser, a victor and a vanquished. 

I stood to introduce myself to Judge Daniels, as is the custom at the beginning of trials, despite the fact that I had known her for many years before she became a judge.  As I did, I knew that I was facing two battles.  In one, my opposition was my “learned friend”, as legal counsel are prone to politely (usually) refer to each other in a courtroom.  But the more imposing opponent was that which caused my hands and legs to shake uncontrollably: Parkinson’s disease.  Its presence was so obvious that it needed no introduction.  However, feeling less than the confident advocate I wanted to portray, I felt compelled to explain or excuse its influence over me, as if to fail to do so in this austere and controlled environment would be disrespectful.  As the explanatory words tumbled awkwardly out of my mouth I immediately regretted my decision.  As I listened to the language I used it somehow sounded to me more like a plea for sympathy than a factual clarification.  I felt it sounded weak; an excuse for anticipated lackluster performance.  

That’s the way it is with Parkinson’s disease.  I always seem to struggle with how to introduce this rather intrusive character who accompanies me everywhere.  At times, it seems safe to ignore his presence, pretend he doesn’t exist.  In some social circles it can become a silent pact of mutual denial.  “Don’t ask.  Don’t tell.”  Somehow, it reminds me of the Hans Christian Andersen’s fairytale, “The Emperor’s New Clothes”, a sad story about dishonesty, self-delusion and prideful hypocrisy.

At other times, I have been tempted to use the “PD Card”.  It is a membership card that is intended to make available special privileges reserved for the disabled, for whom such privileges are necessary as opposed optional.  It is like wearing a handicap parking sign around your neck just to ensure you get a spot closest to the door.  I expect that I may need that privilege card someday, but at present I can walk a few extra steps to the door and rarely need special treatment (other than a little patience when I am getting the necessary change out of my pocket or quickly trying to fill in a form).

 

And between the two alternatives lies the vast middle ground marked out by everything from understatement to complaining, from making excuses to refusing a helping hand.  Whether in a courtroom or on the street corner greeting a fellow lawyer or old friend, it is in this middle ground that I struggle to find the right words.  I suspect other people with Parkinson’s face a similar dilemma.  Trying to choose my words carefully and find a convenient place to introduce my companion, PD, into the discussion is often, to say the least, awkward.  How do I raise the subject, and at least satisfy the other party’s obvious curiosity, without the Parkinson’s proclamation banishing all other topics of discussion?  How do I avoid becoming the subject of someone’s pity while honestly communicating the reality that I have an incurable, chronic and degenerative disease?  This is my dilemma.  

The way I process this problem is to ask myself several questions.  First, is an explanation necessary or appropriate?  Not everyone I meet needs to know I have Parkinson’s.  But a short description may be helpful even to a store clerk whom I will never meet again.  Often, a simple admission, a label without more, is enough.  Most people are more self-conscious about asking about what’s wrong with me than I am about telling him or her.  But the benchmark question that I find most helpful to ask myself is, “What would I want to be told if I were in the other person’s shoes?”

After 3 days in court, my unrelenting tremors seemed less obtrusive.  Other than struggling a time or two with turning the pages of my written argument, the shaking had minimal effect on my performance.  And while Madam Justice Daniels probably didn’t realize it when she delivered her reasons for judgment late that Friday afternoon, I experienced a double win; a resounding victory over opposing counsel, as well as my mortal enemy, Parkinson’s disease.

Burning up on Reentry – Parkinson’s Style

10 years ago, February 1, 2003, seven lives were lost as the Space Shuttle Columbia reentered the Earth’s atmosphere.  Popular misinformation would have us believe that super heating of a returning space capsule is caused by friction due to its supersonic speed.  In fact, most of the heat (24,000°F) is caused by the supersonic (24 times the speed of sound) object “snowplowing” and compressing the atmosphere.  The compressed gases in turn cause radiant heat, which if not dissipated by “heat shields” creates a high-tech incinerator. 

For people with Parkinson’s, or at least for me, it always feels like there is a significant potential to “burn up on reentry” when returning to work after a restful vacation.  Don’t get me wrong, I love being a lawyer, especially being able to practice with such a great team of professionals.  But having PD creates more than just physical challenges for me.  The experts suggest that people with Parkinson’s should avoid high stress activity and engage in a consistent, well-planned exercise program.  Obviously, I fail at both.  Stress and the consequent adrenaline rush are hallmarks of the legal profession, or at least my practice.  And exercise…well… let’s just say it’s more and more difficult to make time to battle the daily fatigue to even fit in a walk around the block.

During the final few days of my most recent vacation, I found myself increasingly anxious, irritable and generally out of sorts when anticipating the return to work.  In years gone by I would have been eager to get back into the fray after a good vacation.  But now PD seems to have damaged the “heat shields”.  My lifelong resistance to stress seems to have been compromised.

In thinking about this experience of reentry anxiety, I found myself searching for ways to grapple with it.  Lessons from Space Shuttle Columbia disaster provided some answers. 

First, like the Columbia catastrophe, it was during the launch when it started to go wrong.  It was a relatively small piece of insulation that came loose and ultimately damaged the craft’s ability to return home safely.  The analogy is obvious.  The messier I leave my desk and the more unprepared I am for departure on vacation, the greater potential for disasters to await me on my return.  As anxious as I am to get away, I need to think about the reentry before I “launch”.

Second, after I have left on vacation, I need to know about serious problems that develop.  In the Columbia situation, the “ground crew” was aware of the damage caused by the insulation debris, just not its severity.  For a variety of reasons, all well-intentioned, steps were not taken to address the potential consequences for reentry.  This is where my capable team is superb, recognizing that even seemingly little problems can become massive issues by the time my return unless dealt with.  

Third, it is better to address problems identified by the “ground crew” well in advance of reentry.  I’m certain that the Columbia support team at Kennedy Space Center did not want to alarm the crew of the space shuttle.  But there were some things that might have been done in space to address the reentry threat, such as the spacewalk to repair the panel damage.  I find I am more comfortable anticipating the known problems to be encountered on reentry rather than discovering them like some brightly colored surprise package on my desk. 

Lastly, even before the Columbia catastrophe, the space shuttles had developed means of reducing the danger of” burning up on reentry” by carefully choosing the trajectory they used in reentering the atmosphere.  Rather than a ballistic approach (something like a high diver hitting the water), the space shuttles uses controlled reentry by skipping along or surfing the upper atmosphere, thereby slowing down and reducing the super heating effect.  Returning from vacation isn’t just a matter of exchanging a pair of swim trunks for a suit and tie.  For me, planning a slower, “controlled reentry” is far safer and saner.  

Parkinson’s disease may continue to use anxiety, loss of confidence and insomnia and try to spoil my last few days of vacation.  But I’m learning ways to fight back and avoid” burning up on reentry”.

The Persistent Professor

Even observed closely, his smile left me guessing.  Neither cruel nor kind, or perhaps both, it was like that of a monarch who could punish or bless depending on his mood.  It remained unchanging as he climbed the stairs and strode effortlessly across the dais to stand in his familiar place high above the students.  His gaze, which from his vantage point took in the whole class, became a stare.  It was as if he knew that I was unprepared for the day’s lesson.  Foolishly, I ignored his silent warning.  I thought I knew the lesson plan and could forgo troublesome preparation.  Disrespectful, even insolent, I had concluded that the professor was intent on repeating a prior day’s lecture.  As he droned on the room became warmer.  Motivated by drowsiness and boredom, I let my eyes close, believing the professor would not notice. 

I awoke from my brief nap with no sense of foreboding.  Checking my watch I concluded that I had slept some 20 minutes.  While to others it might have seemed that the teacher knew I had nodded off and was glaring at me, I barely took notice.  In my self-imposed ignorance I had slept through a pop quiz.  Satisfied that I had spent enough time in the classroom for one day, I excused myself to go searching for other distractions.  It would take several hours before I experienced the sting of professorial punishment for having slept through my lesson. 

Not me!!!

I awoke this morning after a poor night’s sleep feeling a painful prickly sensation all over my chest.  Lifting my night shirt in front of the bathroom mirror my skin shone brilliant red with sunburn, except for the white creases that emphasized the weight I had recently gained around my girth. 

The pain of sunburn seems to be an insistent teacher, despite the fact that I am a poor pupil.  Perhaps it is the result of having lived so many years under the often gray skies of the lower mainland of British Columbia where the sun’s rays are welcome, and rain is perceived as the greater peril.  But you would think that at 60 years of age the dangers of exposing pale white skin to securing sunshine would be easily recognized.  Like a slow learner I seem destined to suffer the sunburn consequence of repeated failure. 

Some things we only learned through pain.  The loss of a loved one teaches us the value of relationships.  The injury resulting from a motor vehicle accident teaches us caution.  Throbbing muscles from exercise teaches that gaining weight is a lot easier than losing it for most of us.  Tennis elbow creates a painful awareness of lack of preparedness.  Pain is a tenacious tutor.

For those of us with Parkinson’s disease, pain is a milepost of progress (if “progress” is what you can call an increase in the number and severity of symptoms).  From toes that curl and crunch into strange contortions (dystonia) to relentlessly stiff muscles and joints that cry out for relief, pain is an unpleasant partner.  Yet, it is my teacher.  It insists that I exercise, rest, stretch and take care of myself or suffer the consequences of more pain until I do.

Most of us would prefer to avoid pain at all costs.  We do so at our peril, for lessons not learned today will be repeated tomorrow one way or another.  For pain is our persistent professor.

A Hopelessly Stupid Hummingbird

He* was locked in a lethal battle by his own perception of reality.  The whirring sound of the Hummingbird’s wings was repeatedly punctuated by a soft ‘thump’ as he stubbornly threw his tiny body against the sunlit window high above the kitchen floor.  This beautiful creature seemed convinced that the window represented the pathway to freedom, contrary to the repeated painful experiences indicating the opposite.

How or why the Hummingbird had ventured inside our home seemed unimportant when faced with the challenge of returning him to his natural habitat outside our home.  I expect that the feeder we had just purchased, filled with sweet water and hung on our back porch had probably tempted the tiny thing too close to the open sliding glass door.  No amount of gentle encouragement from a feather duster or threatening with a broom had the desired effect.  In fact, each attempt resulted in increased frantic flying into the glass, with loosened feathers floating onto my head.  Frustrated and fed up, I threatened aloud to let the ignorant captive determine his own fate.

Perhaps it was the fact that my mercy mission attempts aggravated my painful tennis elbow that caused me to cease my efforts with the heartless condemnation, “Let him die up there then!”  Suddenly there was silence.  No pulsating wings.  No muted frontal assaults on the window.  And in that moment it was as if the bird’s beak pricked my heart.  I, too, was a hopelessly stupid Hummingbird. 

Two weeks ago, my intention was to play tennis every day, having not been able to play at all over the past 3 ½ months.  I had attacked the court with determination, flailing away wildly, but enjoying the sun, sweat and competition.  It was not so much a question of beating my opponent as it was battling my own body.  Bashing the ball across (or more often, into) the net left me feeling in charge of the body that was so relentlessly giving up ground to Parkinson’s disease.  But after two days of enthusiastic play my right elbow screamed, “Stop!”  I bowed out of the scheduled match for the third day thinking that one day’s rest would have me back in play again.  That was not to be.  Deflated, I felt like giving up on my efforts to fight the PD I felt imprisoned by.

The misplaced logic of my younger, pre-Parkinson’s years had led me to believe that I could pick up a tennis racket and play a set or two without preparation, practice or even warming up adequately.  It took the insult of injury to align my perception with the reality.  Who was I to judge a helpless little Hummingbird? 

The fragile bird lay on its back on the windowsill.  My brother-in-law gently grasped the tiny body, intending to relieve me of the need to deal with the lifeless corpse.  But, surprisingly, the helpless wings briefly fought against the cupped hands in what must’ve been a final effort to fight for freedom.  Hand-delivered to freedom outside, very little energy remained as he was placed carefully on the bright red feeder.  He seemed to have just enough life left in him to clutch desperately to the edge of feeder on the porch and sit motionless for several minutes.  Dazed and exhausted, he peered about as if lost. 

I imagined that the Hummingbird was traumatized and disabled to some extent as he flew away, not the same bird he had been before.  But maybe, just maybe, he had learned something about accepting reality instead of choosing the punishment of false perception.

*The choice of male pronoun was not intended to be gender biased.  Presumption of gender was chosen for reasons which will become self-evident.

Changing the World One Person with Parkinson’s at a Time

If Agustin could travel outside of his native Chile just once, it would be to Montréal, Canada.  Due to his Parkinson’s disease, the 5500 miles (8800 km) and 18+ hours in airplanes and airports would make for a difficult journey.  But he knows that nothing has more potential to change his life, and consequently the lives of those he impacts in his own country, than to be in Québec during the first week of October, 2013.  No, it would not be to see the beautiful fall colors.  Agustin wants to participate in the third World Parkinson Congress.  He wants to learn more about how to live with this disease that challenges his every move, and pass that knowledge on to other Chileans who struggle with PD.  What he doesn’t realize is that the true impact of him attending WPC 2013 would be to inspire and encourage many of the more than 3000 attendees.  His enthusiasm and zest for living has the potential to spark even greater commitment within the global community of neurologists, researchers, healthcare professionals and people with Parkinson’s. 

Agustin on1 far right

I met Agustin when visiting Santiago, Chile, last year during my “Shake up My World” round the world trip (see my blog post).  He is representative of other people with Parkinson’s who have demonstrated leadership in their own communities.  But, despite his proven abilities, one week at the Congress would connect him with resources and dozens of other leaders in the Parkinson’s global community.  Although it only happens once every three years, the World Parkinson Congress is a “game changer”.  My own experience in attending WPC 2010 in Glasgow, Scotland, is evidence of that.

As challenging as the traveling would be for Agustin, and as frustrating as it may be for him to communicate in English, rather than Spanish, he would be up to the challenge.  But there is one hurdle that he needs our help to get over.  It is the same one confronting Roland from South Africa, Maria from India, and literally hundreds of international leaders in the worldwide Parkinson’s community.  They cannot afford to attend WPC 2013. 

That is where we all can help.  A number of us who have been privileged to serve as designated Ambassadors for the World Parkinson Congress have decided to put our money (and our efforts) behind the creation of a grassroots initiative.  This is intended to be an opportunity to provide travel grants to those worthy candidates from around the world who would like to attend but simply do not have the money to do so. 

Please consider an online contribution, whether it be $10 or $1000, by clicking on this link?  We are confident that financially enabling proven leaders to attend WPC 2013 will literally have a multiplication effect within the community battling the disabling effects of Parkinson’s disease.  While we can only fund a few, we believe those few can have a significant impact on the 7,000,000+ people struggling with Parkinson’s worldwide.  Will you help us change the world one deserving person at a time?

I alone cannot change the world, 

but I can cast a stone across the waters to create many ripples. 

 ~ Mother Teresa

Dry Needling – Tattooing with No Ink?

The strand of muscle stood out on the inside of my forearm like the E-string stretched taut on a double bass.  It ran from the inside of my right elbow nearly to my wrist.  It throbbed and was painful to even the light touch of Carl, the young physiotherapist sitting opposite me at our kitchen table.  I knew it was a consequence of Parkinson’s disease; the stiffness and unconscious effort to control the tremor created the tightness strange aching.  Having traced its course, Carl started with some deep muscle massage, I had a difficult time stifling groans of pain as he kneaded the muscle with his thumbs.  And when he drove his knuckles bulldozer-like up my arm, moving from wrist to elbow along the tortured path of the stubborn sinew, I had to ask for some respite.  I knew that the muscle was buckled and knotted and needed to be stretched.  But the pain…

Carl kept me talking, as if doing so prevented me from screaming, and asked, “Have you ever tried acupuncture?”  Having experimented with acupuncture once on a cruise (see my post from that experience) I wasn’t overly enthusiastic.  However, this led to his introduction of “dry needling”.  Curious phrase.  Sounded cruel.  Had I looked up the concept I would’ve learned that it was a close cousin to acupuncture but with more hard science and less mystique.  It uses similar solid core (as opposed to hypodermic hollow core – “wet”) needles to probe trigger points for intramuscular stimulation in order to relieve muscle pain.  While not common, it is used by trained physiotherapists for relief of golf and tennis elbow pain.  Maybe it was to avoid the continued punishment by massage, but I quickly agreed to try it. 

The needles were very thin.  About the size of a human hair.  Half the size of sewing thread.  It was like using the smallest tattoo needle, but without the ink.  Carl carefully marked the path of the offending muscle, although the angry red snake stretching down my forearm was easy to identify.  Next, he tapped the 1 inch long (35mm) needles out of their storage tubes (like finger-propelled blow guns), through the skin and into the unsuspecting muscle.  I half expected to hear the scream of a dragon that had been pierced through its neck by a sword.  But there was no pain.  No blood.  Only a strange tingling sensation.  As Carl tapped in the second and third needles into the burning muscle he explained that the procedure was like coaxing the muscle to relax, loosening its grip and resting a while. 

Grasping the head of each small needle in turn he wound it about like an old style butter churn, withdrawing it slightly then plunging it deeper,moving it from side to side under the skin. I knew every time it hit the right place in the muscle when my arm gave a little twitch.  It felt fine, just looked a little strange. 

As I explained my Parkinson’s symptoms to Carl while he poked and prodded under the skin of my arm with those tiny needles I realized that very few people understand that Parkinson’s disease isn’t just tremors and stiffness.  There can be real pain involved.

I must admit that I was relieved when my session was over.  While my forearm muscle in question was very tender, and a bit swollen from the beating it had taken, it did feel more relaxed.  Dry needling didn’t seem like such a far-fetched idea anymore.

Be Prepared!

Video games, text messaging, sports, the arts, extracurricular activities and clashes with societal values seem to have effectively elbowed the Scouting movement from its prominence in Western culture.  Perhaps it is just me mourning the loss of the “good old days”, but growing up I could not have asked for better preparedness training than the Boy Scouts.  Be prepared.  An anachronistic sounding isn’t it?  It is like an old three-mast sailing ship that has been cut adrift, left rudderless and dragging its anchor, easily left behind by the sleek and sensual seagoing craft that dominate the busy seas of entertainment, relevance and life’s demands.  Be prepared?  What does it mean?  Prepared for what?  Who has enough time to be prepared?  Things are changing so fast no one can possibly be prepared.

Seven years ago, January 19, 2006, I was diagnosed with Parkinson’s disease.  I was, to say the least, unprepared.  Emotionally, relationally, professionally and medically I had no clue what I was in for.  Of course, Parkinson’s disease is different for everyone who hears the words of that unfortunate diagnosis.  Unfortunately, in recent years I have found my busyness easily eclipsed the solid fundamentals of preparedness.  Indeed, that Thursday, 2568 days ago, left me grasping for life-bouys just to keep from drowning in the overwhelming implications of my PD diagnosis.  It still does in some senses.  But, slowly, I’m learning. 

Like I did when I was 14.  It was 1966.  I had long since graduated from the “dib, dib, dob” of Cub Scouts, and was moving through Boy Scouts into what was then called Queen Scouts (shortly after renamed to Venture Scouts).  One of the key challenges (badges) barring entry to what was then the highest level of Scouting involved a 72 hour “wilderness” survival camping trip.  Accompanied by an older scout, Brian, I had to be prepared to navigate using a map and compass, build a bivouac from entirely natural materials, and survive on a very minimal and basic food supply accompanied by berries and edible roots, leaves and other flora discovered along the way.  As well, I had to know first aid, the constellations, and the names of birds and animals we encountered.  Perhaps the greatest challenge was to light a fire without a match and keep it alive.  As I recall, the journey was a distance of some 20 miles or more through some pretty rough terrain.  I remember much of the route to this day.  I also remember being tired and quite hungry when it was over.  It had tested my skills, my endurance and my preparedness.

In some senses, we cannot be prepared for the eventualities of living.  It is often a journey that is full of surprises.  Although other people with Parkinson’s have walked the path way ahead of us, they will have experienced it differently.  But, just like a Boy Scout on a wilderness survival camping trip, dealing with Parkinson’s disease requires some preparedness.

How can we prepare to deal with a chronic, currently incurable, degenerative and debilitating disease with all its variables, offs and ons, shaking and freezing and ever-changing regimen of medicines and therapies?  As a fellow traveler on this journey, let me share seven things I have learned in the seven years since my diagnosis.

 

1. 1     Don’t try to go it alone.  There is no need to.  Let someone else walk alongside you.  If not physically present, a companion who is electronically present can help.  For safety and sanity, stay social, stay connected.
2. 2.     A map used by others can be a helpful tool, even if not perfect.  Reading about, listening to, communicating with other people with PD can provide encouragement and advice as to how they made their way along the pathway.  Their experience, their map outlining the way they went, can be incredibly useful in plotting your own course.
3. 3.     Sometimes all you need to know is the direction you need to go.  A compass is a simple instrument that points True North.  Just like the key principles in your life, it will point you in the right direction.  When you’re feeling lost the map may not help you.  But a compass will orient you.  Keep your eye on the direction you’re heading, the important values you believe in.
4. 4.     Have a place of shelter.  In survival camping you learn to make a shelter under varying circumstances.  When darkness falls or inclement weather approaches, a convenient sheltering tree, rock overhang, or even a cave (uninhabited you hope) can provide shelter.  Finding a place of comfort when it’s time to stop and rest is important for our soul.  Where do you retreat when the storms roll in and it is difficult to keep going?  Find a place.
5. 5.     Treat your body well.  Eating, exercising, and resting are all fundamental to enduring our battle with Parkinson’s, just as they are to enduring survival mode camping.  Having the disease is like being in a wilderness where the fundamentals are sometimes difficult to maintain.  Take care yourself.
6. 6.     Learn what you can.  Being on a wilderness hike provides the opportunity to observe and experience in special, even unique, ways.  Parkinson’s disease provides similar opportunities to discover the unique abilities of our bodies, and how those same bodies can react to disease.  But it’s not just the disease that we can study.  It is how we can fight, and even conquer, its effects.  The more we know about our ailments, the more we know how to respond to them.
7. 7.     Finally, when you’re tired, discouraged and have limited desire to carry on, persevere anyway.  We need you to keep the fire alive, grit your teeth and push harder along the journey.  Even if no one else notices, be your own hero.  Take each day as it comes, with its challenges and opportunities, and makes the most of it.

BE PREPARED!