Just Leave Me Alone!

When life’s circumstances seem to trap you, squeezing you in their grip, applying increasing pressure and demanding a response to questions that are bombarding your universe like incoming meteors, everything gets messy.

We feel out of control (as if we ever were). Death, disease, disability, discouragement, depression, disorientation or disaster - and these are just the things that start with the D - threaten our daily existence. We find ourselves scrambling for cover, digging a foxhole, curling up in a ball, or hiding our eyes to shut out the fear, the pain, the inevitability.

“Just leave me alone!”, we shout to no one and nothing in particular. Can’t we just make it all go away? Can’t we just fix it?

The answer is “No”. We might be able to deny the situations we face for a while. Difficulties might be delayed somewhat. But ultimately, we must deal with the tough stuff, face our fears, fight back, accept suffering and sacrifice as necessary, or at least inescapable, parts of living.

Lately, too many friends are being confronted by the harshest of realities; difficulties from divorce to dying, and a veritable invasion of other sad events. Sometimes, like missiles, these struggles come in clusters, as if the destruction caused by one is not enough.

When it all seems too much, too hard, where do we turn? The Greek philosopher Epictetus said, "We cannot choose our external circumstances, but we can always choose how we respond to them".  But let me add, doing life alone, especially in the crucible when heat and pressure so easily overwhelm, is not the answer.

We are designed for interdependence, relationship, community. We cannot hope to prevail on our own. We need to share the burdens, the pain and the tragedy, especially when they don’t make sense. We need the freedom to ask” Why”, while knowing that there is no obvious answer. We need caring listeners to be our mirror. We need allies to help us fight back, maintain the hope regardless of the odds. But in the process we must risk being misunderstood, rejected, and disappointed by others. After all, we are far from perfect ourselves.

P.S.  While drafting this post I felt alone. I had planned to be attending the World Parkinson's Congress in Japan next week.  I was looking forward to being there mostly to spend time together with friends from around the world who are part of Parkinson's disease community. Unfortunately, I will not be there.  Maybe 2022?  In the meantime, let's stand together. As Michael J Fox said,“We may each have our own individual Parkinson’s, but we all share one thing in common. Hope”

Imagining the Parkinson's Story

What will my Parkinson's disease be like next year? In 5 years? How fast will my PD progress?  These are not inspiring questions.   And if you are asking them the answer in your head is not likely to be overly encouraging.  I could spend all day imagining the worst of predictions.

PD or no PD, we all spend time, often a great deal of time, translating our current struggles into tomorrow's sorrows. Why do we envisage unhappy endings in the middle of the story.  Instead, we could be writing the ending we want and working to make it a reality.  I am convinced that there must be no giving up on the best ending, even in the worst of times.

Great authors start fictional works with the end in mind. Successful adventurers begin their journeys with their destination chosen. It is a terrible waste to simply live like you write a journal or just wander through each day, month or year aimlessly without direction. There is little benefit to singing endless verses of the Doris Day fatalistic hit, "Que Sera Sera". How about memorizing Martin Luther King's "I Have a Dream" instead.  After all, which is more inspiring?

Someone once said, "Life wouldn't be so tough if it weren't so daily."  It is certainly true for those of us with PD. The dailyness is often tough, and we know it may well get worse. But what if we write our story as a battle that ends victoriously. What does "victory" mean to you? If you can't define it how will you attain it? Now I know that a positive plan does not mean it will play out perfectly. Circumstances may dictate edits to the plan, a twist in the tale or even writing a new chapter. But if you cannot imagine a happy ending then today's troubles will replay themselves as variations on the "woe is me" theme.

We must dare to imagine a way through the troubles we face. We must define success even when doing so creates the fear of failure. We must pursue our best dreams even if it means confronting our worst nightmares. If we fail to script a hero's ending to life's saga then we have become the villain.

Help! I am an 18-Year-Old Stuck in a 58-Year-Old Body With Parkinson's Disease

There was no dream too big. No limit to the adventures ahead. The sun was shining, the flowers blooming, and love was in the air. Life could only get better and better. At 18 years old, the world was literally my oyster, seeded with not just one pearl but an inexhaustible supply. I wanted them all.

Growing old or suffering some sickness were too far away to even imagine; a highly questionable long-term weather forecast that seemed irrelevant. We were still riding the waves of the ideal 1960s, when we, the flower-powered youth, commandeered the wheelhouse of culture, demanding change and chanting, "do not trust anyone over 30" (David Weinberger, University of California Berkeley, 1964).

40 years passed. Quickly! Those years were filled with pursuing dreams; sometimes realizing them with jubilation, and sometimes watching them die a slow, discouraging death. Most of us have now come to realize that, in our rebellion against authority, one thing we had forgotten was to "respect our elders". In fact, we had forgotten our elders altogether. The "old folks’ homes" were nonexistent to most of us back then. Parkinson's and other "old people’s diseases" were virtually unknown to young people. Of course, all that is changing. Now, when cursing the dizzying speed with which technology changes, we may whisper, at least to ourselves, "do not trust anyone under 30". We cannot seem to keep up to them. We are tiring of the panicked pace. But we do not know how to slow down and give up the control we have maintained for the past four decades. In fact, we may even fear that the youth of today will follow our example and relegate us to somewhat more upscale "old folks’ homes" to be left alone to question the quality and powerlessness of the lives we have left.

For many of us in this bloated demographic bubble called ‘baby boomers’, we have begun to realize the ironic comparison between the heady optimism of our teenage years, and the over-promising, under-delivering expectations we are sold on infomercials guaranteeing painlessness, performance and prosperity to defeat our skepticism. Somehow, to put our hope in either the drug-induced dreams of yesterday, or the pill-popping promises of tomorrow, seems hopelessly unrealistic.

Perhaps foolishly, I am still 18 at heart. But I seem to be indentured to a body that is insistent on teaching me about pain and imperfection, aging and disability. Despite these lessons, there remains in me, as there does in many other baby boomers, an enthusiasm, a curiosity, a thirst for learning and a heart that wants to see the world become a better place. But the 18-year-old heart has matured. While optimism may be more guarded, I cannot give up the belief that our generation can make a difference, both for ourselves and the generations to follow.

It is an exciting time to reclaim the best things about our youth: our communication of passion, our ability to understand power and influence, our willingness to work together despite differences. But instead of being distracted by protests, parties, pot and politics, we have an opportunity to use 40 years’ worth of skills and resources to focus on the needs of those who face, or will face, chronic and degenerative disease. That is more than a distant dream. It is attainable.

A - Z for People with Parkinson's

Simple but memorable.  The following is based on a talk I gave at the Parkinson’s Society of British Columbia - New Diagnosis Day – October 3, 2009

These are things that I have learned and am still learning:

ATTITUDE – Attitude is everything. How are you doing with your attitude? – It’s a decision! Not a feeling. We didn’t choose this disease but we can choose how we are going to respond to it. It need not define us!

BRAVERY – Some days you will need it. You will feel sorry for yourself sometimes. That is okay. Just don’t stay there. Fight back.

CARING FOR OTHERS – Including your caregiver. We can be hardest on those closest to us. Focus on the world of others not self and you will be far less likely to fall into self-pity.

DEPRESSION – Watch out! It sneaks up on you. Anticipate it now. Beware if you are feeling anti-social, consistently down, apathetic, or experience change of eating habits or lack of sleep.

ENERGY – Fatigue is often an enemy. How will you combat the villain?  Naps are a great remedy.

FAITH – Faith can be very important to inform your attitude and give purpose to this chapter in your life. It gives focus to all other “letters”.

GROUPS – find others that are struggling and keep in communication. You are not alone.  Even if a group of two, it helps.

HELP – Be willing to seek and accept help. Don’t let your pride keep you from allowing others to help. Allowing someone to give to you requires humility and being vulnerable and communicates value.

INTELLECTUAL AND IMAGINATIVE STIMULATION – Beware the forms of entertainment that allow your mind and creativity to turn to mush. What stimulates your mind? How can you be creative?

JOURNAL – Keep track of what you are thinking and how you are feeling. Write, type or dictate ideas, plans and goals. Record the good, the bad and the ugly. It can then be understood by you (and others) better.

KNOWLEDGE – Keep up with what might be helpful. Be in the know. Great books and websites are available.

LAUGHTER – Look for the humorous. Spend time with people that make you laugh. Learn to laugh at yourself.

MAKE MEMORIES – Build the treasure chest of great memories and stories intentionally but be ready for the spontaneous. With whom do you want to build memories?  What kind of memories (places, faces, experiences)?  Ask why you want these memories. Need not always be laughter memories.  Remember that memories usually are shared.

NEVER GIVE UP – You are a model for those who watch how you live with your challenges. How will you “finish well”? What does that look like in your world? The disease cannot beat us if we defy it. Choose not to give in and let it get in the driver's seat.

OPTIMISM – About what? Breakthroughs are happening daily. Support the effort. Life could be worse. Life is still worth living when you have a mission. We all enjoy the infectious optimism that encourages us to keep trying, keep living, and keep hoping in anticipation of what good things will happen. Avoid wallowing in self-pity at all cost. A little is realistic, but no more.

PURPOSE – Find a purpose that transcends the disease and gives focus to the time, talents, energies and resources you have. It may be to visit and encourage others. It may be to learn a new skill or take a class.

QUALITY LIVING – What is it that impedes living a quality life? What is quality versus quantity? Define the values you ascribe to. Don’t ask what I can’t do, but rather what I can do. Make a decision to live a quality life despite or even because of the PD.

READ – So many books on dealing with disease or challenges (Tuesdays With Morrie). They are uplifting. Consider writing your story.

SOCIALIZE – Family and friends are keys to avoiding that “aloneness” feeling. The tremor and other symptoms often result in us feeling awkward and embarrassed. Combat that feeling of wanting to distance or isolate yourself.

TALK – Others often don’t know how to respond to you but you can talk to them about it. How can you do this without sounding like you want their pity, or being silent and afraid of getting a shrug?  Accept yourself as you are and others will accept you.

UNDERSTAND – The disease, the roles of the various health care professionals and the treatments available. Keep a drug diary. Record and research medication responses. Keep a binder of information on PD.  Join http://www.patientslikeme.com/.

VENTURE – What is an adventure? It is something a little scary, risky, out of the norm, exciting and challenging. Something we look forward to. Reach beyond the comfort zone. Every day has adventure.   Find it. Every day is a great day (sometimes we just don’t recognize it). So find and live the adventure in each day. Look forward to things (daily, weekly, monthly and yearly).  What do you want to do while you can? Every year pick something that is an adventure.  Mine is motorcycle rides.

WORK – Find something to keep you productive. If you are not able to work, make something your “work”. It will make the resting and relaxing rewarding.

XERCIZE - Get moving and keep moving. Anything – stretching, strength and cardio. Helps with fatigue, depression, plus physical symptoms. Build in accountability to someone (trainer/coach/nag).

Y ME? – This is an unanswerable question. Why not you or me? Why do you have the support to actually survive this disease? The reason does not matter, only how you respond to the card dealt to you.

ZZZZZZ – Get the sleep you need. How can you deal with insomnia? Ideas from others?

Maybe make one of these ideas a focus point for each of the next 26 days.  Let's just do it!

Bucket List - 2010

What are you looking forward to?

Although it is raining outside tonight, the weather in this brand-new year has not been excessively rainy. And the snow has managed to make only the briefest of appearances. Despite the gloom and gray of threatening skies, there must be a reason why this time of year causes me to think about my "bucket list". While it seems a strange and somewhat morbid fascination, or even addiction, I find a growing excitement when contemplating what might be struck from that list in the year ahead.

If you remember the Jack Nicholson and Morgan Freeman movie (The Bucket List), the 2 main characters recognized their mortality and realized that time was inevitably running out. What does one do when one faces that reality? Some would sigh and bemoan the fact that they cannot do everything they would like before they "kick the bucket". Others would simply ignore the reality of the clock winding down, effectively denying the inevitable, and continue to live life in the same fashion as it had been lived before. But, recognizing the value of the time we have to live, some of us make a "bucket list".

Whatever "kick the bucket" originally meant, and whatever one believes about the afterlife, there is certainly merit in those of us with Parkinson's disease asking the question, "what do I want to do now that I may not be able to do in the future?" In my experience, and I expect and that of others, there are a multitude of rather phenomenal benefits that occur from answering this question and then working on the resulting list.

The first benefit is that one's priorities are committed to writing.  In many cases the real important things in life are not written down. This is what triggers the imagination of the characters in the movie. The really important stuff of living is often subverted to the urgent or obligatory demands that confront us daily. Somehow it seems selfish to answer the question, "What is really important to me?"  But what could be more important than asking and answering that question?

Secondly, making and pursuing a bucket list gives one focus, a sense of priority, something to look forward to.  Rather than simply anticipating the inevitable deterioration of our physical and mental functioning, we can concentrate on living life to the fullest, as may to some extent be defined by our circumstances, but is often most limited by our choices. This exercise gives purpose beyond the daily regime we often fall into, rather than choose.

Thirdly, you can take it from me, and others who have pursued marking items off their own bucket lists, that the enjoyment and sense of achievement is thrilling. It leaves a legacy of stories to tell and encouragement for others to reach beyond their comfort zone into a land of hopes and dreams that can come true. I have found that my list has grown even as I have checked off items each year. And with it my desire to seize the day. Carpe diem! Some of my friends with Parkinson's have grasped this rallying cry, making it their solemn commitment in the fight against the corrosive effects of the disease. Every goal accomplished is a strike against the our opponent.

Fourthly, but not finally as there are too many results to discuss here, by listing the items our hearts desire we can begin to see how very much there is that we can do, instead of focusing on what we cannot do. It is in this way that we can defeat the enemy of hopelessness that so often hides in the shadows of this disease that seeks to take from us the life we had, and thought we would have.

Go around the world. Visit friends or relatives or the home you have not seen since you were a child. Write a book. Skydive or scuba dive. Go to Antarctica. Get a degree. Learn a new art, hobby, skill or language. Climb a mountain (not me!).  What are you really looking forward to this year?

The Right Arm Swinging - Saga of Stiffness

As with many people dealing with Parkinson's disease, the arm of my affected side does not swing naturally. I must make quite the strange picture. I usually walk quite fast. My left arm soldiers on in fine form with enough momentum to propel me in circles, while the right seems to have forgotten the cadence altogether, standing at attention like one of the Queen's Guards at Buckingham Palace. Recently, it seems to have forgotten how to do a number of things that it would normally. For instance, casually throwing my arm around the shoulders of my wife while out for a stroll on one of these recent cold nights would have been natural and easy only a few months ago. Now it feels as awkward as when I was a 12-year-old in the movies on a first date. Suave and sophisticated I was not. Furthermore, the sudden pain is like someone is wrenching my shoulder out of its socket. It appears that the stiffening is setting in like Jell-O in the refrigerator; imperceptibly slow but nonetheless noticeable from time to time.

Fortunately, the “bradykinesia” (a medical term for slow movement) or “akinesia” (absence of movement) does not affect much else. In some people with Parkinson's this problem can evidence itself in an expressionless face or even "freezing" in place, both constituting awkward and embarrassing social occasions. But for me, this right arm-swinging trouble constitutes nothing more than an inconvenience.

In the great scheme of things, this is hardly a major issue. But, as with the rest of life, learning the little lessons prepares us to take on the big ones. So what can I do about it? This is a question I believe we all need to ask when faced with challenges, in my case related to my mostly silent partner, Parkinson's.

First, when I notice my right arm absentmindedly failing to keep up with the left, I can be more intentional, forcing it to perform its normal duties. Second, I can get back to exercise and stretching (yuck!). Starting tomorrow I will climb back on the exercise wagon that I fall off so easily and regularly. Third, I can see a physiotherapist about doing the right things to offset the onset of stiffness. That I will do in early January. And fourth, despite all of the Olympic fervor and fever in anticipation of the upcoming Winter games here in British Columbia, I can abandon the idea that somehow I need to adopt the pursuit of going "faster, higher, farther".

As I have stated before, most battles begin with how we think about them. We are not defeated when we cannot do what we used to do, only when we cease to do what we can do.

Winston, War and Parkinson's

Exhausted from too many late nights at work, and having grabbed an insufficient four hours sleep before we dashed off to make the early morning flight from Vancouver to Miami, I slumped into window seat 13F, expecting to be asleep before we left the ground.  We had snagged the emergency exit aisle with the extra legroom and "reclining" seats, ensuring some ability to snooze.  As we were settling in I noticed that the movie to be played was "Into the Storm".  I had never heard of the 2009 Emmy-winning TV miniseries.  But something held my sagging eyelids open as I saw the rotund, cigar-chomping images of Winston Churchill.  I became totally engrossed as soon as I had my headphones plugged in and began hearing the fighting words of that savior of England. Those words inspired me as I began to see the analogy of Parkinson's as a war to be waged against an ever-fiercer force.

Churchill was a grand, if somewhat pompous, figure who strode confidently into the right place at the right time.  But at the time, few who knew the man considered him much more than a populist orator, an opportunist from a privileged background who succeeded to the office of British Prime Minister in the wake of Neville Chamberlain's retreat. Yet, despite his significant human failings (he smoked, drank and ate too much), he evidenced such courage, or brash arrogance, that he convinced or cajoled his nation and its leaders to not surrender to Hitler's Nazi bullies, but fight on despite formidable, even insurmountable, odds.  His determination and single-mindedness were legendary and critical to ultimate victory.  But, curiously, he was not a man for easy times, as his 1945 electoral defeat, after winning the war, convincingly evidenced.  He was born to fight.  The war made Churchill, as much as he made war.  It called out his greatness, his best.

I am inspired by Churchill's commitment to fight the enemy, regardless of his self-doubt and how futile war must have seemed.  I concluded at the end of that movie that he would be an inner voice for me, barking out encouragement or demanding improvement in the battle against PD.  Consider what he said and apply these statements to your enemy:

"Never give in - never, never, never, never...never give in... Never yield to force; never yield to the apparently overwhelming might of the enemy."

"Success is not final, failure is not fatal: it is the courage to continue that counts."

"Courage is the first of human qualities because it is the quality which guarantees all others."

"Sure I am of this, that you have only to endure to conquer."

"It is a mistake to look too far ahead. Only one link of the chain of destiny can be handled at a time."

"We shall draw from the heart of suffering itself the means of inspiration and survival."

Now ours is not a 5-year war with Parkinson's disease. Nor do we live in an age when fighting is portrayed positively.  We, of our generation, have grown up believing that all problems of conflict can be solved without sacrifice or saviors, hurt or harm. Such thinking in 1940 almost snuffed out the candle of democracy. But whatever our political persuasions, when it comes to PD we cannot negotiate.  Appeasement is not a strategic option.  We must battle its ravages until it is defeated. No wonder we feel fatigued from time to time, for it is a fierce fight.

We can be inspired by others who go to war against this daunting foe.  Like Michael J. Fox, fellow Canadian and crusader for a cure and the cash to pursue it, or Muhammad Ali, who, once as dauntless and ego-expressive as Churchill, does not hide in shame, or the hundreds who seek a better world for themselves and those who wake each day to face the enemy.  But even Churchill did not stand alone.  He has his Clementine, who soldiered on with equal bravery.  So too are there those today who prop up those trembling and stiffened hands, such as Fox's Tracy Pollan, and Ali's Yolanda.  I am reminded of my own bride of 35 years and the Churchill quote that certainly resonates for me.  Winston said, "My most brilliant achievement was my ability to be able to persuade my wife to marry me."

In times of war we need heroes.  Parkinson's is no exception.  We need inspiration and encouragement.  Maybe you know such a person who will help you to never give in.  Maybe you can be a soldier rather than a caualty.  It will take relentless, steely-eyed commitment.  But as Churchill said. "In war: resolution".