Wednesday, September 29, 2010

The Power of Personal Mission Statements by People with Parkinson's Disease

The "Zuiderdam", a Holland America cruise ship, pitched and rolled in the confused seas, making walking, eating and even sleeping a challenge. It was the first morning of our law firm retreat and the 19 team members struggled to put on brave, though somewhat green, faces as they entered the meeting room for our 3 hour business session. The retreat theme, "Building Our Team", seemed a hopeless cause as staff and lawyers alike were in various weakened conditions, some clutching sea sickness bags as evidence of at least a tentative commitment to be there. Leading the interactive session as I had planned would not be easy.

But despite the ship's drunken movements reminding each of us of the incessant threat caused by the diagonal swells striking the bow, we all remained. Even the fog horn blaring into the mist every two minutes did not cause anyone to bolt. It was tangible evidence of our commitment to the team and its common purposes. Meaningful discussion followed, during which both recent imports and 12 year veterans testified to the unique foundation upon which our team was built; its Mission Statement and Core Values.

The Mission spoke of our commitment to care for our clients, serving them as trusted problem solvers, while the Core Values affirmed how we as a team would serve each other in the process. Without exception there was wholehearted endorsement of these fundamental principles. Clearly, this affirmation evidenced the value of every person in the firm. Each person was much more than a functionary. They were not just doing a job. Each one was a missionary with a purpose to fulfill, an ambassador for the team's values.

I could not help but think of my life as a person with Parkinson's disease. Staggering along life's corridors, fighting the fear, toughing out the times of weakness, I needed to be reminded of my mission through all of this. My commitment is to grapple with the giant of PD every day and, whether I stagger and fall or stave off its incessant attacks, to grow through each battle, fighting so as to encourage others. There is power in that purpose.

What is your personal mission statement that will see you through when your boat is rocked about in rough waters?

Tuesday, September 28, 2010

Panic at Palanga

My heart stopped beating and the cold sweat that came over me felt as if I had just walked into a meat freezer after a work out. It was 530 in the morning and still dark outside the tiny Palanga airport. I had been there waiting for the place to open since 0500. I was tired, having been up at 4 AM to meet the taxi that had been arranged. I was happy to be early for my flight scheduled to leave at 0645. Better an hour early than 5 minutes late when it comes to flying anywhere these days. I had been in no hurry to check in, as the act would seal the end of my too short sojourn in Lithuania. But I had moved from the hard plastic chair when the two Scandinavian Airlines staff were free after dealing with the first few bleary-eyed passengers. It was then that, like stepping on a landmine and feeling the trigger engage, I realized what I had done.

The is only one item that is essential for travel these days; a passport. You could manage without your luggage or money if you needed to. But a passport is a showstopper. Mentally retracing my steps, I suddenly knew I had left it on the desk in my hotel room, intending to put it in my carry-on just before leaving. I could "see" it there in the empty room, silently saying, "How could you be so careless?".

I immediately began playing out the disastrous consequences. I miss this flight to Copenhagen and the next one is too late to make my connection to Heathrow and then home. That would put me too late to catch the cruise ship on which my firm was leaving for a business retreat, non-stop to San Francisco. My mouth went dry. "Stupid!", I heard as the judgment of all who would hear the story.

"Calm down", I said, "Think.". Make a plan and implement immediately. Step one; call my friends at the hotel and rudely awaken them from a much needed sleep. Step two; have them convince the hotel staff to check my room. Step three; find out how to get my passport safely transported to the airport. Step four; pray it arrives on time. All passengers are required to be through security by 0615. Even if everything goes perfectly it may not make it. It was now 0545. No margin for error.

Pacing, 0600. Pacing, 0605. Pacing, 0610. I was sure that those watching were nervous about what I might be up to as they watched my obviously stressed expression and behaviour, staring at my carry-on.

At 0613 a decal-marked cab with no passengers sped into sight and screeched to a stop outside the door marked, "Departures". I pulled open the taxi's front door, tore a large white envelope with my name on it from the driver's hand, stating my name at the same time. I sputtered out a "thank you" in both English and Lithuanian before I realized he probably wanted more than my appreciation, enthusiastic and sincere as that was. I gave the driver the small amount of Lithuanian Litas and told him confidently that the hotel would pay. He seemed to accept the glib assurance, thereby calming my fears of being arrested by the armed security guard for failing to pay the fare.

Dashing to the check-in counter I presented my precious passport to the agent. She must have thought me extremely anxious as my tremour had been set to high by the events of the last 45 minutes. It was too difficult to explain the affect of the situation on my Parkinson's disease. I bolted for the security area, trying to look casual as my carry-on was cleared as I watched the last of the other passengers mount the stairs to the small turboprop.

I immediatly fell asleep after boarding.

Wednesday, September 22, 2010

Parkinson's Disease - Everyone Use Your Slingshot

In size it is number 122 out of 249 countries in the world, just ahead of, Togo, Svalbard and its neighbor, Latvia. With 3.5 million people it is hardly a powerhouse. There are no significant geographic advantages, natural resources, distinguishing features or objectively measurable benefits enjoyed by this country. Caught up in the crushing arms of the big mother bear, Russia, in 1940 without so much as a, "Hey, you cannot do that!" from the rest of the world, it reluctantly served as Moscow's primary ice free port on the Baltic Sea. That is, with the exception of the 4 years under Nazi control.

Lithuania is the quintessential little guy by almost any comparison. But even without David's slingshot, this country has proven that, with determination, you can slay a Goliath and in the process change the world. It was a mere 20 years ago, on March 11, 1990, when the Soviet "bellybutton" state decided it had had enough. After 50 years of indentured servitude, Lithuanians wanted freedom from their chains, forming a historic human chain of some 2 million people, stretching far beyond its own borders. In fact, this small country led its fellow Soviet states by example and became the tipping point for the collapse of the USSR. Who would have guessed it?

Most of us feel like the "little guy" most of the time. By any objective standard each of us are relatively insignificant. Many things could disqualify us from the category of people who change the world. Not enough money, limited political clout, mediocre talent and, at least in my case, a chronic degenerative disease. These and other apparent shortcomings all exclude us from the ranks of great people. Or at least that is what we find ourselves believing.

I suspect, without knowing, that Lithuania did not set out to be a world-changing giant-killer. My understanding is that its citizens simply wanted their freedom and were prepared to do whatever they could to gain it. So, what am I doing in my "little guy" way to change my world for the better; to do what I can to shake off the shackles that keep me, and others, from reaching their potential? Having seen what Lithuania has done, I am convinced that each of us "little guys" can do something.

For those of us with Parkinson's disease, or any other health challenge, it may be doing something to improve the lot of those around us. Maybe it is visiting someone with PD who does not feel comfortable in a public setting. Maybe it is volunteering to be part of a study on new medication or better ways to treat this disease. Or maybe it is by living with courage, forming a virtual human chain of people willing to bravely defying the domination of disease.

Everyone has a slingshot.

Tuesday, September 21, 2010

Speaking the Language of Parkinson's Disease

"Atchoo!" No need to say "Bless You " in response. The word (spelled phonetically) means, "Thank You" in Lithuanian. Since arriving, I have attempted to learn a few words in the local language. So far it is pretty limited.  "Laabaas" is "Hello", and "Laabaas Reeta" (remember to roll your r's) is "Good morning". That is about it so far. Despite having a reasonably good grasp of how words need to sound, I do not seem to be able to retain them or their meaning for very long. I seem to have the great ability to say "hello" when I mean "thank you" and vice versa. As a result I find myself constantly referring to my Blackberry where I have written down the words I want to use and remember. Of course, by the time I find them, it is too late, and I feel foolish as they walk away, no doubt wondering about what kind of nut I am.

Despite my half-baked attempts at communicating in a foreign language, I continue to believe it is important to at least try. Attempting to speak someone else's language communicates more than words and ideas. It communicates you care enough to try something that is quite difficult and out of your comfort zone. It is an attempt to relate to others on their turf, rather than forcing them to accommodate you and speak your world-culture-dominant language. Perhaps it is a paltry attempt at expressing humility and respect.

My wife and I learned this word-gathering on cruise ships, where the chances of being served by someone whose native tongue is English remains statistically rare. So years ago we decided to attempt at least a few words in the language of the servers we connected with. Romanian, Indonesian, Italian, Greek, Spanish, Polish, and Filipino words were written down and saved to use next time we encountered someone who spoke that language. Such a list has proven enormously helpful in bridging the gap between cultures, languages and the discomfort faced by strangers who wonder if they share anything in common with me.

This process has helped me realize how much easy it is to stay within one's own comfort zone. Take, for example, the world of Parkinson's disease. Those of us who man the battlements of that disease use terminology that is probably as foreign to most of you as Urdu or Telegu. We use words like "dyskinesia" (not to be mistaken for a chain of tropical islands) and "dystonia" (not a neighbor of Estonia), which populate the dictionary used by people with Parkinson's.

Of course, to some extent, we all have our own sub-languages, comfortable vocabulary, and semi-secret coded words. Whether it is a profession, religion, culture, hobby, illness or disability, each have their own language and communication can be a challenge.

So by now you get my point. I do not pretend to have mastered it myself, but there are numerous times when I discovered real merit in learning even a few words in other languages. And if, like me, you are prone to mispronounce and forget the words you learn, maybe writing them down would help. Just a thought.

Monday, September 20, 2010

Parkinson's Disease - A Cross to Bear?

The seemingly misplaced mound of dirt stands just a mile off the A2 Highway between the Lithuanian capital, Vilnius, and the seaport city, Klaipeda.  All but the most observant would speed by and miss it amid the rolling terrain. Standing no higher than a three-storey house, it covers an area the size of a football field. But despite its limited size, this knoll is a monument of sacrifice for freedom, sacred to more than just Lithuanians.  The thousands of crosses memorialize the names of  departed loved ones.  Harmless though it seems, the communists had bulldozed its collection of iconic crosses more than once.  But little is able to suppress the human spirit for long. People will die to set it free.

Today, the Hill of Crosses hung its head in the rain, its shoulders shrouded by low clouds like a prayer shawl. Beaten down by the elements, many of the countless crosses stood akimbo or were badly weathered, as if knowing that soon their time would come to fall or rot in place, only to be replaced by others crafted and carried up the hill by sombre pilgrims. Most of the crucifixes, whether wood or metal, bore a name of someone lost to the living but whose contribution in life was missed and honoured.

Like monuments of defiant freedom-seekers dotted throughout this country, this place commemorates more than a religious commitment or an ad hoc collection of Christian symbols. It endures as a testimony of people who, in circumstances too diverse and painful to detail, modeled sacrifice turned into victory.

Whether one accepts it as sacred or fairy tale, the cross is a symbol of how a painful and seemingly senseless suffering and death became a victory of inestimable significance, freedom prevailing over slavery. Ironically, this instrument of Roman torture has won the hearts and minds of million across the centuries and around the world.  Thus, the phrase, "a cross to bear", is not limited to its common colloquial meaning as a plight of pain or a heavy burden to endure.  Its symbolism speaks of the legacy that sacrifice can leave, of winning freedom by the way life is lived.
The sight of this impromtu memorial to courage and loss spoke to me of the opportunity for inspiration that we who bear the cross of PD leave to those who will follow.  We must tell them that the tyrant lies and seeks to convince us we are captives to its despotic power.  We must live as people with power who plant the cross we carry on a hill so that the world may see that victory can be torn from the grip of our enemy.  We must ensure by the way we live that our sacrifice is not in vein, that we are free and cannot be owned by any thief of our health.  We must give to those who follow us the gift of courage and hope.   Regardless of whether the long-sought cure or treatment arrives tomorrow, let those who face the PD challenges of the future say, "We can overcome because they showed us how."

Sunday, September 19, 2010

Vancouver to Vilnius

Polish Airlines flight 42 was the longest of 3 flights on the journey from Vancouver to Vilnius (Lithuania), altogether taking more than 22 hours. That is a long time to be traveling. But it felt even longer.

It was raining when I struggled out of bed at 4 AM Saturday morning, after a short sleep in our ground-floor guestroom. You see, the new floors are going in our house, and they cannot be walked on. So we access only 3 rooms in the house, each having their own outside entrance. We get into the laundry room where keys, coats and shoes are (and, of course, laundry is done) through the garage. The kitchen has the back deck door that allows us to get in and eat. And the guestroom, filled with lamps, a disassembled desk and numerous boxes piled waist high, consuming all available floor space, has its own outside sliding glass door. We had fallen exhausted into bed about 11 PM Friday night, after clearing off a small ocean of precious displaced knickknacks, which had to find homes in the already very crowded room.  Then seemingly moments later the morning's alarm had gone off and, groggy though I was, I knew it was just the beginning of the day's challenges.

You may have noticed that there was no reference to the bathroom in my description of the rooms available for our use. This meant a trek in my underwear and barefeet through the rain to the pool house bathroom in order to have a shower and otherwise get ready to go. I imagined my neighbors waking up early and peering out of a second-floor window into our backyard and wondering who this half naked man was wandering about in the predawn rain. But after a quick shower my pre-medicated haze dissipated somewhat and we were off to the airport.

 Have you ever noticed the huge variety of people in an airport? Some appear to be mad, some glad, but this morning most just appeared tired. After purchasing a neck pillow for the long journey ahead, I headed for the departure gate and set up shop with my computer and Blackberry plugged into a nearby power outlet, which is always a rare find in airports for some reason.

The four and a half hour flight from Vancouver to Toronto was uneventful, although full of people of various descriptions, including the extraordinarily large one seated directly in front of me. I must admit that I felt sorry for both her and the person seated next to her. But before I went too far into that discussion in my head, I remember that I too might present a less than desirable seatmate if my restless leg syndrome came back midflight. However, the flight past quite quickly while I listen to the personal sound system embedded in the seatback in front of me, plugged into my hearing aids using Bluetooth technology and the modern miracles of science. In fact, not only did I have my own private TV and sound system, complete with an array of movies, games and music, there was also a power outlet and a USB port. By the time I was fully set up it looked more like an electronics store than a seat in the economy section of an airplane flying across the country.

But if the flight from Vancouver to Toronto was high-tech, the Polish Airlines trip from Toronto to Warsaw was definitely its low-tech cousin. There was nothing in the seatback in front of me except the seatback in front of me. The central video screen seem to work fine, but began by playing several hours of Polish cartoons without subtitles. When it was time for the only movie on the 9 hour flight, "Letters from Juliet", the audio part of the system seemed to fail completely, at least in any seat near me. However, as with much of Hollywood's products these days, I did not need to hear anything anyway. The plot was obvious from its visual cues. I passed the time snoozing and doing some reading.

And if the flight from Toronto to Warsaw lacked technical comforts, the flight aboard the turbojet from Warsaw to Vilnius was definitely no-tech. Thankfully it was only an hour and a half flight. However, a half-dozen Lithuanian teenage girls seemed to be competing for who could giggle the most. I was forced to use my secret weapon; removal of my hearing aids. Thereafter I slept the remaining part of the flight and arrived in the capital of Lithuania halfway refreshed. It was 230 Sunday afternoon and Vilnius is 10 hours ahead of Vancouver. Doing the math, which I had to do 3 or 4 times to be certain it was right, that meant I had been travelling for a little more than 24 hours. But facing a sunny afternoon and an opportunity to visit this historical city with its vibrant youthful culture, and Sunday markets along nearby streets, there was just enough time for a quick shower before we headed out to explore.

After a delicious dinner with some new Lithuanian friends, and my travel mates, it was back to the hotel where I found myself more wide awake than I should be.  My head filled with thoughts of the day.
Inevitably, they turned.  The journey seemed to parallel the past, present and potential future of my battle with Parkinson's disease. The beginning was marked by anticipation as to what might be ahead, and the first leg of the journey riding in relative comfort and ease. The long, middle leg of the trip was aboard a less comfortable more cramped flying machine that seemed to shudder from time to time without reason. Whereas, the final portion was in a smaller plane yet, with smaller spaces for everyone, and with the annoyance of uncaring young people to whom it did not seem to apparently matter that I wanted some sleep and time in peace.

However, the journey has been well worth it. Tired though I may be from more than 31 hours of the activities engaged in after getting out of bed and dashing for the shower in the rain, the experience has been invigorating, mind-expanding and allowed me to experience and see things I may never do/see again. Parkinson's disease seems to be like that. It can be exhausting, frustrating, and feel long and uncomfortable. But it has expanded my horizons in any number of directions.

Wednesday, September 15, 2010

5 Things Every Person with Parkinson's Disease Does Not Need From You

Be honest. How do you respond to people who are not like you? Someone who drags her foot, is obese, is missing arm, is wheelchair-bound, as a speech impediment, has a wandering eye or whose face is pocked with acne scars. What do you say? How do you act?
As well-intentioned as we may be, often it is difficult to know what to say or do. Many times we are just silent, pretend there is nothing unusual, look away or just plain ignore people who are different. As my Parkinson's disease symptoms become more noticeable, so do the reactions of those who notice them. It has surprised me. But from this experience I am learning what it is like to be seen as "different".

So let me share one insider's view of what people with Parkinson's do not need from you. In the following blog I will tell you my answers to the more difficult question, "What every person with Parkinson's disease needs from you."

Pity. We do not need you to feel sorry for us.  We can feel sorry for ourselves, and sometimes do. But it does not really help to have anyone feeling sorry for you. Sympathy, while often well-intentioned, can simply communicate that we have a reason to feel sorry for ourselves.

Silence. Pretending there is nothing wrong, nothing different, is often like failing to recognize the elephant in the room. We know we have a tremor. We know that you know we have a tremor. We also know that sometimes it is difficult to talk about the obvious, for fear of drawing attention to it or making the other person feel uncomfortable. Silence is uncomfortable.

Ignorance is never bliss, it is just ignorance. Trying to communicate that you "understand" by trotting out a limited series of experiences with or facts about Parkinson's often puts the person with the disease in a position where he or she needs to correct your misapprehension or misinformation.  Careful with the stories.

False praise feels pretty good at first. But insincerity usually communicates a lack of true respect or caring. Many people who struggle with being different, whether because of a degenerative condition or some other imperfections, know when dishonest plaudits are given.

Paternalism or maternalism seeks to overprotect, to "baby" us, but in the process may erode our sense of worth and dignity. That is not to say that we do not need help sometimes (and some of us are too proud to ask for it), but it takes sensitivity to discern between help needed and help imposed.

Whether we like it or not, we all reflect our views of others as if we were mirrors. Our words may be deceptive, but our eyes, our expressions, our body language, and our actions can be as brazen as a billboard projecting what we really think and feel about the people we meet. Try as you might, any disguise is subject to wardrobe failure.

I can accept the fact that people struggle with how to respond to someone with Parkinson's, or any other
notably uncommon characteristic, appearance, sound or odour. But given the likelihood of this reoccurring countless times in a lifetime, you would think that we would learn how to cope with these situations better than slapping on a disingenuous smile and making excuses to pardon ourselves from the discomfort created by ourselves.

Sunday, September 12, 2010

Parkinson's Disease and My Blackberry

You can have your iPhone 4.

I am a Blackberry devotee. I admit I have not given the Apple product much of a try, but I cannot imagine getting used to a keyboard that has no tactile or auditory response to confirm my commands. My Parkinson’s disease gives me enough trouble trying to manipulate the tiny thumb-ball and hit the right key on my Blackberry QWERTY board. Just the thought of my PD-stiffened fingers trying to “swish” through pages of data on the iPhone like a gambler dealing cards leaves me sweating. The idea aiming for the right images in the liquid crystal display “aquarium” leaves me clutching the older mechanical technology I am used to. The brainy but fragile Apple wunderkind has an aluminosilicate glass surface that would inevitably fail to survive the numerous fumbles that my Blackberry screen has suffered. I doubt if Mr. Jobs was thinking about selling many of his latest delicate touch screen products to people with Parkinson’s. He was counting on the tech-savvy and healthy young folks to fuel the waves of technological frenzy. Technology does not always serve the disabled.

I admit it. Some days my old Blackberry feels like a part of me. It provides memory where mine might fail. What am I doing today? When? Where? How do I get there? I shudder to think of the separation anxiety that I would suffer if I lost the machine that so ably replaces my dopamine-diminished mental faculties. One could argue it is the command centre of my life. We are certainly very close. It waits, red light blinking, on my bedside table ready to take my thumb-punched midnight brainstorm notes in place of the pencil I can no longer use. It threatens each morning to shriek at me to get up, were it not for the fact that insomnia has in gentle but insistent tones achieved that purpose much earlier. Now Bluetooth-compatible, it commandeers my car’s sound system, forcing me to speak its language if I want to listen to “Chicago’s Greatest Hits” or the BBC World Service. Even when outside the car the Blackberry crawls right into my head where my Bluetooth-enabled hearing aids serve double-duty by channeling phone calls and music to my auditory cortex, in stereo no less. Makes the volume-addicted earbud users wish they were deaf (although they may be soon enough).

But, as anyone familiar with edible blackberries knows, there are thorns to contend with. As a technophobe, the thorns have occasionally gotten the better of me. Glitches apparently unique to me have resulted in hours of telephonic technical support with someone in a faraway place chuckling at me while he/she gives me step-by-step instructions my 2-year-old grandson could follow. There have been screen freezes, unanticipated and unexplained vibrations, incredibly slow functioning, times when memory was erased and other times when calendar entries were cloned and multiplied. Of course, all of these glitches could be metaphors for PD.

But my most common irritant is when my laptop and Blackberry do not sync. Theses computers are clever enough to tell me there is a conflict between the reality on one machine versus the other, but not smart enough to tell me which reality is the real one. Sometimes that is the way I feel about PD; it prevents me from syncing with reality. Inside I am young at heart and ready to take on any challenge, pursue any adventure and champion any cause. But when my PD is dominant I find myself looking for the nearest fire escape, a last minute vacation or just an excuse to lie down. Sometimes PD, like my old Blackberry, is out of sync with reality, yet it creates and imposes its own certainty. And I must choose between the two.

Despite the passing frustrations with my Blackberry and its aging technology, I hang onto it. It is, for the most part, reliable and comfortable and, even if it is a little slower, I am too. I don’t need to keep up with all the bells and whistles. It puts up with my shortcomings and I do the same for it. Makes for a good relationship.

Wednesday, September 8, 2010

A Curious Thing About My Parkinson's Disease

We should switch New Year's Day and Labour Day.  September rivals January.  So many things start this month.  There is a definite jump-shift from summer sun and vacation mode to autumn showers and a return to diligence.   Above all, no matter our age, September spells a return to school, or at least a memory of that dreaded day.  We learned lessons we did not think we needed.  We reacted to teachers as if they were masochists engaged in cooking up conspiratorial mind-numbing experiments.  What else would they be doing in those staff rooms where they retreated with glee every chance they got.   The education system we were subjected to took 12 years, or in some cases more, to douse the primordial spark that fuels all real learning: curiosity.

What are you curious about?  Do you find yourself wondering what words like "primordial" mean, or where terms like "jump-shift" came from?   How often do you use a dictionary, inquire about your ancestry, find out where Uzbekistan really is, or how many people have actually been to the moon?  Do you care that it is improper to answer, "Good!" when asked "How are you?" in the morning?  Why not?

Schooling was not in my years,  nor is it today, portrayed as the exploration of the unknown, an adventure without borders.  It was, like Parkinson's disease, systemic evolutionary rigor mortis.  It was focused on building barriers to keep us from coloring outside the lines, promoted as a place where instructors were paid to follow curriculum.  We learned early that daring to ask the rare question was to invoke the sneering stares and shunning of classmates.  The kid with his or her hand up did not risk unpopularity, he/she guaranteed it.  Maybe that is what Albert Einstein meant when he said, "It is a miracle that curiosity survives formal education.”

Today, the inquisitive mind is equated with the quaint, the cute and the queer (in the original use of that term).  "Trivial Pursuit" is, after all, "trivial".  Why learn something that does not serve a practical purpose?  We are all about immediate gratification and relevance; relevance to me.

Parkinson's disease changed all that for me.  Or maybe it just made something that was unimportant relevant.  Suddenly, at least after I emerged from the dazed detachment of denial, I wanted to know about this "old person's disease" that caused them to tremble and shuffle and stare expressionless into nowhere.  But I also became more aware of other things I knew nothing about.  The mind that produced an insufficient supply of dopamine manufactured an abundance of  new questions; ones I had never asked.  What are MS, ALS, and muscular dystrophy?  How do people cope with loss of function?  How does one age gracefully when it hurts?  What is important to me in the end?  I have regained a perspective found more commonly in naive children who cannot accept a glib "Because!" in answer to their "Why?"

I have a lot of unanswered questions as a result of my PD.  What? How? When? Where? Why?  Are you curious?

Judge a person by their questions, rather than their answers.”

Saturday, September 4, 2010

Renovations Required?

I love our home. It is a place of refuge and comfort, security and, most of the time, sanity. As a result we plan to stay here for a long time, provided it does not become too much of a burden, given the progression of my Parkinson's disease.

Having lived in our home for 17 years now, it seemed about time to undertake some renovations. At least that is what my energetic wife felt. And she had some great plans and very specific ideas of what she wanted. This involved updating the kitchen and master bathroom, as well as changing some flooring.

As a lawyer who handles construction disputes, often involving renovation disasters, I did not warm to the proposal quickly. But, recognizing the subjective value to my wife and objective value to our home, we ultimately agreed. Of course it helped that I felt somewhat guilty taking multiple weeks a year away from my family for my annual motorcycle journey.

But, alas, by their very nature, renovations are unpredictable. Usually that means they cost more and take longer than expected. Take the new flooring for example. Tearing up the old stuff proved to be somewhat difficult given that it was both nailed and screwed to the subfloor. In the process, the subfloor was ruined, requiring its replacement. Doing so left our storage area directly under the floor exposed to thousands of shards of wood and an inestimable amount of dust and dirt to be cleaned. At last the floor was completed (conveniently at the same time as I returned from my motorcycle trip). However, despite our expectations, that was not the end of the story. Apparently a manufacturing error resulted in the floor delaminating, “cupping” and lifting, leaving the surface looking like small waves on a pond. It all had to be torn up and new material installed. About 3 weeks from now I will let you know how it turns out.

"Renovate" comes from the Latin root, "nova" which means, "new", with the "re" meaning "again". In other words, "to make new again". A dictionary definition gives two alternatives: 1. To restore to an earlier condition, as by repairing or remodeling; 2. To impart new vigor to; revive.

During our experience I began to realize the metaphor of renovation applied to my life, as well as to the lives of others. Is it not true that we often believe certain aspects of our lives need a renovation? It may not be to "restore to an earlier condition", but it needs to at least "gain a new vigor".  Most of us intuitively realize that once we start a renovation it is almost certainly going to cost more, at a multitude of levels, and take longer than we expect. And dealing with one area that needs renovation usually discloses another area in need of repair. So what have I learned from the application of this metaphor?

First, be careful in identifying what part of your life needs to change and why. Are you simply trying to impress your friends and neighbors, like one might with a new car or the latest technological advance? Write the “what” and “why” down.

Second, make a plan and count the cost of the process. You would best not try to renovate everything at once, even if you could. Planning and budgeting seem to be a lost art these days, whether it is government projects or personal finances. But when it comes to renovating one's life, a well-developed and prioritized plan and realistic estimate of direct, and indirect, cost is critical if success is to be achieved. Have the plan reviewed for feedback from others who might be impacted by it.

Third, be prepared for surprises, usually not the pleasant kind! It is very easy to become disappointed when self-discipline fails, circumstances conspire against you and resources dwindle or disappear altogether. Anticipate how you will respond to each "what-if” you can think of, and develop a contingency plan B.

Last, develop an accountability "buddy" system so that you are not alone undertaking the renovation. It might be another person sharing the same type of renovation project, or someone who is paid to encourage and cajole you.

Parkinson's disease requires me to undertake some fairly radical renovation, given that I intend to live my life to the fullest of its potential.

What kind of renovations do you need to do?

Wednesday, September 1, 2010


"Relentless (adj): unyeilding; steady and persistent."

Living without regrets requires daily decisions to be relentless. 

Because the momentum or inertia of living is broken by periods of sleep (in my case sporadic), I am forced to decide how I will approach each day.  We all are.  Sure, yesterday informs toda, but it cannot dictate to it.  At least not unless I let it do so.  And waiting expectantly for tomorrow, either in anticipation or dread, often just presses the pause button, putting the only day we have on hold.

The past is gone, yet there is the temptation to long for its less troubled times.  Those of us facing a degenerative disease, although this is just as true of aging, are prone to mourn the losses.  Loss of health, youth, relevance, capacity, vigour, strength, security, relationships, reputation, independence or just the passage of time.  Whatever I am losing, or have lost, can create a "remember when" longing for what was. 

The future is sometimes enough to make me shut my eyes, denying the imminent arrival of battles that must be fought.  It is like facing the end of summer, the arrival of fall and the rain and cold that will follow.  Other times I daydream of travels, adventures and freedom from the demands and troubles of today.  I can easily live lost in anticipation.

Parkinson's disease is relentless.
This blight, although 'kinder' than some illnesses, never allows a week off, or a day or waking hour to rest.  It demands your constant attention like an opponent in the boxing match.  The nightly 'rests between rounds' are more like fitful naps, often overwhelmed by foreshadowing of the continued roughness of the ring.  It is reminiscent of the refrain from the Simon and Garfunkel hit from the 1960s, "The Boxer":

In the clearing stands a boxer
And a fighter by his trade
And he carries the reminders
Of ev'ry glove that layed him down
Or cut him till he cried out
In his anger and his shame
"I am leaving, I am leaving"
But the fighter still remains

And so I must be relentless. 

Relentless in facing each day with its challenges, disappointments and frustrations.  Relentless in fighting my enemy, staying on my toes, vigilant, ready to attack or defend.  I must let go of mourning the losses.  I must not stand waiting for the future.  I must not take anything for granted.  To the extent humanly possible I must live today so as to have no reason for regrets tomorrow. 

Relentless.  Relentless.  Relentless.