Pain, Parkinson's and Possibility

Phyllis was a spinster and lived alone. She had done so for most of her life. Now 83 years old, she occupied a single room in the nursing home where she resided with her collection of bedraggled plush toys, including "Kitty". Except for weekly visits by her kindly cousin, I was the only one who came to see her. It was never a particularly pleasant visit. But I was obliged to go.   Through a strange turn of events, I had become her lawyer and the only person she appeared to trust with her power of attorney. For the 12 years I had known her I rarely saw her smile, except when speaking to Kitty and her other stuffed animals that surrounded her in her bed. She would often break off our conversations to speak to Kitty as she lovingly caressed it. It used to purr, but the batteries died. The staff requested that I not buy new ones because Phyllis would have Kitty meowing at all times of the day and night, bothering the sensitive sleepers. 

When I entered her room on each visit, my opening question was almost always, "How are you today, Phyllis?" In response, subject only to being diverted by me onto other topics (or to speak to Kitty), she began reciting a litany of complaints. She described her aches and pains in unabridged and minute detail, which, she complained, the doctor had abruptly dismissed. There was the heavyset nurse who treated her roughly when moving her to and from her wheelchair. Then there were the grumbles about the lack of attention she received when she needed someone to help. She bemoaned the fact that no one came to visit her or take her for walks or drives. She even complained about her long-suffering cousin because, "She doesn't come often enough". And then, always, there was the complaint that "Kitty" was broken and no longer spoke with her. During the hour I spent with her, and despite her monologue of protests, I somehow managed to slip in the things I needed to tell her about her finances before I had to leave. I always felt guilty and heartless when I sensed the overwhelming urge to end my "visit" and leave her alone again to wallow in self-pity and no one tell about it except the mute Kitty. Perhaps that is why I always leaned over and gave her a kiss on the forehead before departing. I remember her bony hand gripping my hand more tightly as I sought to withdraw it in order to leave. I understood why she was lonely. The word "I" had effectively crowded out any interest in, or ability to communicate with, others. When she died there were a small handful of people at her funeral. They were the few that she left behind. 

Douglas was another story, although he was about the same age as Phyllis. He, too, had come to me some years earlier to assist him with some legal issues. Over time we grew closer, and he appointed me to be the executor of his estate when he died, and granted a power of attorney in case he became infirm. He had lived much of his life serving others. Even in his mid-80s he had a kind face that was often marked by a smile when he saw me coming to visit him. In fact, though chronic arthritic pain racked his body constantly, he always got up, dressed in a jacket and tie, and was waiting cane in hand to meet me when I rang the doorbell to his small suite. On every occasion, his skinny hands, only slightly bigger than Phyllis's, reached out to grip mine in a welcoming, firm handshake. I was afraid to return its firmness for fear of crushing the fragile bones I could feel in my palm. We would visit over cookies and a cup of tea that he had made. He wanted to know all about how my family was doing, how my legal practice was faring and what things I had planned for the future. It was only when I insisted that he became willing to talk about what was happening in his life. When asked he would give a cursory review of his current health situation (it was never good) before he turned to more pleasant subjects. He would often fondly reminisce about earlier days when we would take walks together, usually my then young children in tow. He told me about mutual friends that he kept in touch with. I enjoyed those times with Douglas. I felt encouraged, warmed and enriched when I left, somewhat begrudgingly resigned to the fact that I had duties to attend to. The he always asked me the same question just before I walked out the door. "Bob, is there anything I can pray about for you?" When he died the church was full of mourners, many of whom shed tears while telling stories about Douglas while we shared refreshments in the church hall after the service.

Phyllis and Douglas left lasting impressions on me. They both had suffered pain in their lives. But they couldn't have handled it more differently. 

Pain, whether due to Parkinson's or otherwise, will uncover one's priorities. It cuts to the core of who we are. It reveals the truth about each of us. Perhaps that is why we fear it. We crave the comfortable. We opt for the easy. Anything to anesthetize and avoid the aching. From childbirth to our final days, pain is the teacher we hate the most but from whom we learn the most.

Pain is no evil, unless it conquers us.

Charles Kingsley (19th-century author)

                                

Clyde's Clever Idea

If beating a drum and dressing funny doesn't work, how do you draw attention to a disease that you cannot really understand unless you live with it?

Ask Clyde Campbell, a clever guy who's putting his money where his mouth is.  He is the Australian businessman who started a nonprofit organization called, "Shake it up Australia" to raise funds for Parkinson's research. The name is a call to action.  He is driven to do what he can do help find a cure for PD. Certainly, part of his motivation stems from the fact that he was diagnosed with the disease in 2009 at the age of 44. But, having spent some time with him in Australia when I was there in June (see my post about Clyde), I suspect the greater motivation to do something is really for his children.


If you watch this video you will see how children play an important part in spreading the word about Parkinson's. They do so by distributing what amounts to a temporary distraction that draws attention to the reality of Parkinson's disease. Everyone will know how annoying it is to sit at a table that wobbles.  Typically, I will resort to almost anything to fix it.  Stuffing a folded napkin, a piece of cardboard or even a spoon under the short leg is standard fare. If all else fails I ask for a different table.

Imagine having to put up with a wobbly table for every meal for the rest of your life. Annoying to say the least.  A small hint of what it might feel like to have Parkinson's?

What you think? Is this a good idea?

Hope for People with Parkinson's?

Everyone in the room noticed as a casually dressed man in his mid-40s stumbled a little when he got up from his chair. Brian, his name boldly printed on the lapel card pinching the collar of his shirt, excused himself as he carefully sidestepped in front of those seated in his row of folding chairs. Having made his way to the center aisle he grasped the chrome stand holding up the waiting microphone as if for support. He was an intelligent-looking man of average height and build, but the frame of his body was slightly slumped, as if he couldn't quite stand up straight because of an invisible weight on his shoulders. He raised his head to look at the panel of educated experts who had been expounding on the advances in scientific research and its progress towards a cure for Parkinson's disease. To me, the only person with Parkinson's on the Q & A panel that followed the scholarly presentations, Brian's face looked tired. 

"What should I put my hope in?" he asked with a tone of desperation, as if daring someone to answer. Brian was impatient. Parkinson's had stolen so much from him, his work, his family, and his future. And it wasn't finished yet. When no one answered he seemed to consider it an invitation to push harder for an answer to this question. "You tell us that you're excited about the long list of recent discoveries that have been made. But no one is saying we are actually any closer to finding a cure. Millions of dollars are being spent every year but we may be no closer to a real breakthrough than we were 10 years ago. It's easy for you to walk around your laboratories and medical facilities proclaiming that there have been significant developments. But you use noncommittal language and words I don't understand. All the while I'm struggling to shuffle around the block a little slower every day. I feel like I'm bleeding to death and desperately in need a bandage that no one seems to be able to find. Tell me, what should I hope for?"

Several panel members rose and attempted to underscore the fact that progress was being made in many areas, but it was complex disease. Brian was not satisfied and he turned to make his way back to his chair. "What now?" everyone seemed to be thinking. 

I stood, partly out of empathy, and partly out of a desire to stop the silence from filling the room. Hope. What is hope? Is it just naïve optimism? Is it a belief in the tooth fairy, Santa Claus or "they lived happily ever after" endings? Why do some people have it and others do not? Why do we need it to survive? I had to say something before the language of hopelessness went viral. 

"What's the alternative? What if we don't hope for a cure? What if we don't act on that hope by committing ourselves to finding ways to improve the lot of those of us with PD? What if we stop supporting the efforts of the researchers, clinicians and those who fund them? What then?"

"We must hope. We must place our hope in those who have devoted their lives to finding a cure. If not for our generation, then for those in the future who will suffer the plight of Parkinson's." 

My words were inadequate, not thought through and poorly organized. I had not really answered the question, and I knew it.

Having thought more about it since, I have begun to realize hope is not delivered to us because we weep a tear or cry out in pain. Hope does not happen because frustration and fear permeate our sleeping and waking hours. Hope is a decision that each of us can make or refuse to make. Yes, we can "feel" hopeful, but feelings flutter in and out like the shadows of butterflies. We cannot capture feelings.

So how do we find hope? How do we build hope? I welcome your thoughts, but for now I have concluded it requires action on our part:

• 1.     We must be willing to step out, to seek, to dream, to risk, to make mistakes. Fear is the enemy. To tremble in the hopeless darkness is to refuse to live.
• 2.     We must acknowledge that disappointment, discouragement and unmet expectations are byproducts of having hope. The past only defines what has been. It does not limit the future.
• 3.     We must recognize the world is bigger than ourselves. Living is not "all about me". A generation that demands "what's in it for me?" betrays its ancestors and steals from its children.
• 4.     We must be patient. Risk and reward, investment and return, effort and accolades, desire and gratification are often separated by time. Even by a great deal of time.
• 5.     We must have faith, be willing to suspend our disbelief. Cynicism is simply a refusal to be hurt.  But there is a purpose behind it all, even if we don't understand it.
• 6.     We must choose our words carefully. The language we use can help others build hope or smash it. We rise to the level of the language around us.
• 7.     We must understand that hope is a choice for each of us to make.  Not just once but daily. Another soul may give us hope, but we must choose to hang onto it.

In the end, to give up hope is to abandon our humanity, to desert our destiny, and condemn our children. And to my friend Brian: choose hope.

Personal Resilience - How Is Your Bounce Back?

All of us experience setbacks.  We are let down or knocked over by people we trusted. We are disappointed in ourselves. We are clobbered by circumstances we never anticipated. Sometimes we handle these times well and bounce back quickly. Other times it seems impossible to get up after having fallen. It requires too much energy. All hope seems gone. We simply do not have the will to go on. 

The trouble with having Parkinson's disease is that on any given day we can wake up with that defeated feeling. It is a degenerative disease: it gets worse! The stiffness may have become overwhelming. The tremor has definitely gotten worse. Fatigue has penetrated every pore of your body.   And to top it all off, the pills are not helping as much as they once did. We know that it will take extraordinary amounts of energy, determination and creative thinking just to make it through the day. If we have the ability to face that reality, deal with it and even thrive through it (unimaginable as that may seem) it can make a huge difference in the quality of life for ourselves and those around us. Scientific studies suggest it also increases the length of life. 

Lately, I have been noticing the clouds of gloom and doom are demanding more prominence on the horizon of my daily living. Life just seems harder lately. Maybe the "honeymoon" phase of my PD is over. Regardless of the cause, I begin to wonder about my resilience, my ability to bounce back. So how do we retain or regain or obtain resilience? 

"Personal resilience" is defined by one writer, Sally Lever, as "… our ability to recover from setbacks, to embrace change and to soften, rather than fight, in the face of hardship". Others define it as, "a dynamic process whereby individuals exhibit positive behavioral adaptation when they encounter significant adversity… ". Whatever it is, this personal resilience or "bounce back" potential seems to depend on a few key factors. Scientific studies suggest that to improve our resilience we must:

 1.     Strengthen caring relationships, such as family and friends. Are we surrounded with positive people who love and care about us, are trustworthy, constructive and encouraging? Or are we slowly withdrawing from supportive relationships?

 2.     Decide to "respond" (having given it some thought) rather than "react" (letting our emotions "grab the wheel"). In other words, we must not permit our fear, anger, or sadness to force out planning and objective problem-solving. Do we worry or otherwise emotionally react when faced with adversity instead of working at responding to it?

 3.     Maintain a strong belief that life has a purpose beyond oneself. See life as having significance or spiritual meaning. Does living have a context, a foundation or a definition in which we are important but not central?

 4.     Build and maintain a positive attitude and approach to adversity. Look for what can be learned through tragedy, disappointment or defeat. Wisdom is found in failure. Strength only increases through focusing on weaknesses. Great character is constructed in times of great challenge. 

Most, if not all, of us have been, or will be out sometime, confronted by difficult times of adversity. Many of those dark days may be worse than any I have experienced. Since we don't know the future all we can do is be prepared. Take a personal resilience self-test. How good is your "bounce back"? For me, focusing on the four factors above has served me well. What other ones have helped you?  Let me know your thoughts.

Inside of a ring or out, ain't nothing wrong with going down. It's staying down that's wrong. Mohammed Ali

Gold! Gold! Gold!

As I flew into Whitehorse, a city of some 30,000 people in the Yukon Territory of Canada, I was reminded of the Klondike gold rush that took place up there between 1896 and 1899.  Maybe it was the light from the late evening sun reflecting off the nearby mountains, or perhaps all the Olympic hype about winning gold sparked the connection. Of course, we glamorize and glorify the achievements of those who struck gold either literally or athletically speaking. But for some who participated in each "gold rush" there was to be no gold, only struggle, pain, disappointment and the anonymity of having competed and lost. 

Apparently, 100,000 people came to seek their fortunes in the Yukon gold rush. Only about 40,000 actually succeeded in prospecting for gold. Many of them gave up everything they had to take a chance at bringing home a bag of gold nuggets. A large number lost their lives in the effort to get there and find their fortune. Whether through accident, foul play or simply the severity of the winter, more often than not they ended up buried in a lonely churchyard in some deserted Yukon town. All but 4000 prospectors came away empty-handed. In retrospect, the risk/reward ratio did not make a lot of sense. 

At the XXX Olympiad in London some 10,500 athletes will compete. Many of them will have given years of their lives to prepare the chance to go for the gold. A large number of them will have suffered injury to attain the goal of being an Olympian. Only a few of these competitors’ names will be remembered, as all but a thousand or so athletes will come away empty-handed. And of those who leave London with a medal around his or her neck, few will be remembered outside of their country for long, if at all. I suspect that few people remember my uncle Nelson who holds an Olympic silver medal from the 1960 Rome Olympics as a result of his membership on the Canadian rowing men's 8, even though it was the only medal that Canada brought home from those Olympics. Yet, despite the odds, young men and women from around the world will continue to train and sacrifice to give their best in 2016. 

This quest for gold, be it indicative of financial or athletic success, leaves me feeling inadequate. Of course, regardless of any effort on my part, I would not be a likely recipient of an Olympic medal. And even if I had been less financially risk-averse and dedicated myself to the acquiring of wealth, I doubt that I would ever be among the richest.

So what can I learn from the gold rush of the late 1800s and the modern-day Olympics? Is it that I am simply mediocre and inadequate? Is it that I have never been in the right place at the right time to strike it rich? Am I simply relegated to our easy chairs where I read about or watch the "winners"? Does life for me become petty and small as a result? 

My answer is, "No". It is not the glint of gold that defines me or you. But it is our willingness to strive to be the best we can be. We must compete; not so much against others, but against our own attitudes, apathy and fear. Life is not an event every four years, it is daily. It is what happens when the camera lights have found a new target, the crowds have gone home and no one seems to be watching, let alone cheering. Life is lived for the most part after the Olympic torch no longer leads the procession of confidence. It is when hope for a better tomorrow feels like a candle you carry in the wind.

If gold is a symbol of greatness, let us define it in our daily achievements.

Louder Than Words

Henry spoke in forced, frustrated breaths. Each word seemed pushed from his lips. I followed the movement of his lips as they formed each syllable. Every word seemed important. Each sentence was short. His eyes were earnest and bright with intensity. He leaned forward in his chair. He wanted me to hear him. He needed me to listen. The message was clear. He wants to help others. He wants to make a difference, to leave a legacy.  He reminded me of  the fighting spirit of Mohammed Ali. 

Since being diagnosed with Parkinson's disease 12 years ago, Henry Block, as you would expect, has increasingly avoided the limelight, preferring instead the company of his wife and family; his children, grandchildren and great-grandchildren. They are his support group.  At 86 years old, Henry is living a very different life than he has been used to, or expected. For more than six decades he demonstrated his strong work ethic, entrepreneurial spirit and successful business instinct. This was notably evident when in 1955, he and his brother, Art, established Block Bros., which grew through the 1960s and 70s to be one of the largest real estate development firms in Canada. He had been a powerful spokesperson, a strong advocate for business pursuits, philanthropy and his faith. But Parkinson's disease has a way of stealing some of the best parts of us, leaving instead uncontrollable trembling, immobilizing stiffness, disabling exhaustion, and deep depression. In Henry's case, the thief made off with his independence. Instead of driving a brand-new luxury vehicle, he is left in need of a walker for indoors and a mobility scooter for outdoors. The robber stole his movement control, forcing him to go through deep brain stimulation surgery, which in turn left him without his clear and clarion ability to speak. 

At Henry's age, most folks, whether healthy or not, are hanging onto life while at the same time wondering about the purpose in doing so. Not so with Henry. He is committed to helping others, even if it risks attracting public pity as a person with Parkinson's, rather than applause as a successful businessman. So it was no real surprise when Henry, and his wife Laura, and other members of the family, made a commitment to the Parkinson's Society of British Columbia and their key fundraising event, SuperWalk. They could've done so financially, but Henry wanted to do more than write a cheque. He wanted to participate.  Years ago, in recognition of the importance of working together he said, "Our future is each other, and…together we continue to create a community." I was impressed by his willing to take the humbling step of publicly standing (or maybe sitting) with a community of other people with Parkinson's in a fundraising event. Perhaps he typifies how weaknesses are quite capable of becoming strengths.  He reminds me of Mohammed Ali. 

Henry and his family sincerely want to help others challenged by the devastation of Parkinson's disease. Henry has committed to match the first $50,000 of those donating to the SuperWalk through "Hike for Hank". With that kind of offer, I wanted to help Henry help others. I will be joining Henry, his family and hundreds of others who will participate in Parkinson SuperWalk on September 9 at Bear Creek Park in Surrey, British Columbia. If you wish (no pressure), you can donate online at: www.parkinsonsuperwalk.ca and locate "Hike for Hank" team. Or you can use my shortcut: http://tinyurl.com/8md6a3j

Words are rarely the most trustworthy form of communication. As a lawyer, I have learned to be a little skeptical (okay, very skeptical).  The look in people's eyes, their facial expressions, body movements and language, and most of all action, speak louder than words.