When a Baby Smiles

Despite the anguish, the baby slipped silently into the world.

No announcement. No fanfare. No cheering. Suddenly aware of the light exposing its naked vulnerability, the baby shivered. It was not from the cold or from fear, although the newborn child would have gladly reentered the quiet warmth and safety of the womb, were that possible. The constant, uncontrollable shuddering was part of its personality, buried deep in its DNA. But despite its unfamiliar surroundings and uncertain future, the baby smiled. It felt good to smile, to know that despite the circumstances leading up to its birth it could smile. It chose to smile. And as others noticed that smile, they smiled too. And that made the baby smile all the more.

Such was the birth of this blog one year ago. It was a baby born in some dopamine-deprived moment. Like any other child, there have been moments of laughter, embarrassment and pain. Perhaps because of that, others have provided companionship, reassurance and comfort along the way. Most of all, the baby, and its author, have both kept their smile.

The first person I met with Parkinson's disease reached out her shaky hand and made an astonishing introductory statement. "It is great that you can still smile", she said. To a newly diagnosed person with Parkinson's, that statement sent me reeling. I knew about the Parkinson's mask, but somehow could not imagine losing my smile and all the expressiveness that went with it. At that moment I knew that my job was to maintain my smile as best I could under any circumstances, and in doing so promote a positive attitude to living with Parkinson's disease.

When I started my blog, positivelyparkinsons, I knew that my primary purpose would be to encourage others facing the common foe, sharing my journey in hopes that it would be easier for others to share their journey. I knew writing on a regular basis would provide a creative and cathartic outlet, which it has. But that alone would have been easily accomplished without "going public". The blog provided a commitment to keep, a discipline to maintain.

People who know me know that I enjoy recognizing birthdays, except my own. These annual occasions provide an opportunity to be thankful for the year gone by, celebrate life as it is, and look forward to whatever adventure lay ahead. So in this birthday blog I am reevaluating, looking for constructive feedback, positive or negative. I am certain that this blog can be much better in achieving its purpose. But without constructive criticism I am left to self-evaluation (which is usually of limited assistance, usually being too soft or hard to be reliable).

So, while I am not sure who make up most of the readers of this blog, I am soliciting your response. Do not be afraid of hurting my feelings. I am a lawyer remember. Specifically, I want to know how you think I could improve this blog, help it to better achieve its purpose of communicating encouragement. Tell me what has worked and what has not worked for you. What was your favorite posting? What was your least favorite? What questions do you want answered? Would it be preferable to have more or fewer postings? Would it be better to have postings on an exact schedule (say, every Wednesday and Sunday) rather than just randomly about twice a week? Should there be text and no pictures? Should the postings be shorter or longer?

My baby is one year old. To help it grow, mature and make a difference for some, it will need guidance. To do so you may leave a comment below, or send an e-mail to bkuhn1@gmail.com. Thanks.

What is the Toughest Thing About Having Parkinson's Disease?

Mirrors do not always tell the truth, but they always tell you something.

A mirror can be flattering or discouraging. It can make you smile or cry, wince or stare, chuckle or choke. A mirror has tremendous magical power. Take, for instance, the enchanted mirror of the Queen in “Snow White”. Everyone knows what she was hoping for, even expecting, when she chanted, "Mirror, mirror on the wall, who is the fairest of us all?" But instead of the usual, "You, my Queen, are fairest of all”, she heard that some young thing had stolen her claim to fame. That judgment ate at her like acid, driving her to murderous ends to regain her former persona. It was not enough that she was the Queen. She had a self-image to maintain.

Lately, I have been asking myself, "With what aspect of Parkinson's disease do I struggle most?" Does it relate to the symptoms: the tremors, stiffness or fatigue? What about coping with the degenerative nature of an incurable disease? Well, yes, my symptoms are often very frustrating, and the fact that nothing currently is able to significantly slow my slide into more advanced stages of the disease is discouraging. But these are not the toughest parts of Parkinson's.

My "mirrors", unlike the Queen’s, do not usually say anything out loud. They are the eyes of those who observe me. In them I see a question mark. Just a hint of doubt seems to flicker across the pupils as they focus for just a split second on my tremor or my slowness of movement on my right side, the slight hitch in my step. The reflection that speaks to me is the momentary hesitation I see as someone's brain assimilates the message I have just communicated, "I have Parkinson's disease". Despite the fact that these "mirrors" barely whisper, what I hear, loud and clear, are messages like, "You are no longer as strong and capable as you once were", "I am different from you", and, "I feel sorry for you, and I am sure glad that I am not in your shoes."

Of course, just as the Queen and her magic mirror are make-believe, to some extent, so too are the "voices" that I hear speaking from the eyes, posture and silence of others. But, conversely, some of the messages coming from the "mirrors" are true. I am not able to do what I used to do. I have changed because of this disease.

I am beginning to understand that, with ever increasing frequency and intensity, the "mirrors" around me inevitably and unwittingly will be sending messages to my dopamine-deprived brain to process. As with most people, it is disarming to have others pick up on my vulnerability, my perceived or real weaknesses. My response may be defensiveness, denial or diversion. Of course, the alternatives of false flattery can be equally toxic. Sometimes, I find myself believing the almost subliminal messages that I am of less value, a person to be pitied, destined to be segregated, self-isolated, lonely and misunderstood. This inevitably leads to loss of confidence, self-pity, sadness, or even depression.

So what is the toughest part of having Parkinson's disease? It is my processing of perceptions, be they false or true, managing the mirrors society uses, whether intentionally or naïvely, to reflect my value. Are the messages of the mirror accurate, or even partly true? And if so, how am I to best respond?

The Brothers Grimm fairy tale, "Snow White", has another even more somber application to life after diagnosis with Parkinson's disease. While Walt Disney did not portray it this way, in the original ending the Queen was punished for her evil ways by having iron shoes strapped to her feet and forced to dance until she died. Burdened by believing in the heavy messages of the mirrors around us, people with Parkinson's all too often unnecessarily shuffle in a dance of death.

The Queen in “Snow White” could have avoided her awful ending simply by saying in response to her mirror, "Well, second best is pretty good under the circumstances. I need to focus less on labels and external beauty and more on developing my inner beauty." I cannot blame a mirror for my response any more than the Queen could say, "The mirror made me do it!" It is up to me how I process each mirror’s message. I am the one that has to be alert to the messages being reflected my way. I must sort truth from fiction. It is my responsibility to choose how to respond, neither denying reality nor legitimizing fiction. My choices will dictate whether I am set free from the limitations of others' perceptions of me, or die trying to dance in shoes of iron.

Sleep Tight

Turning the light off, I slid the pocket-door that led to the next room open a crack and peered with one eye into the darkness. I saw nothing but black as I waited for my temporary night-blindness to dissolve, having forgotten to accustom my eyes to the darkness before engaging on the mission. The door had made the slightest of scraping sounds despite my great care in moving it only an inch or less. There was a rustling sound in the room, like someone or something scurrying for cover. I froze, fearful I had been seen even if I could not see. Perfectly still, I waited and wondered. What should I do next? But the noise stopped even as my staring eye gained sight. The objects in the room slowly became outlines and shadows as the cloud-covered moon strained to penetrate through the horizontal blinds. Although shut tight, moonlight leaked through in fine lines into the room, like it does under a closed door. “What was that?” I whispered to myself. I stopped breathing even as I heard the steady exhaling and inhaling coming from a dark shape curled up in a low pen in the middle of the room. I dared go no further. I was afraid to let my breath out until managing to squeeze the door shut.

I stood alone in the dark for long minutes before quietly retreating, leaving my almost-two-year-old grandson, PJ, sleeping soundly in his playpen. With the excuse of checking on him I had just wanted a glimpse of his totally untroubled sleep. It was an uninterrupted sublime state he would enjoy for a full 10 hours; waking up refreshed and ready for another day of eating and playing, endlessly reciting “drive Gampa’s bike”, napping and enjoying being the centre of everyone’s attention before collapsing into the slumber of innocence again.

Would that I could sleep like that again. It has been over 12 years since I have slept through the night. Perhaps it was one of the earliest signs of my Parkinson’s disease, seven years before diagnosis. 50 to 60% of people with Parkinson's suffer from some form of insomnia. I have what is called "fragmented insomnia" having become accustomed to waking up 3 or 4 times a night for no apparent reason. I can be found wandering down to my den at 3 in the morning to answer e-mails, make a small dent in the "read when there is nothing better to do" pile (there always seems to be something better to do), or writing a sentence or two of a blog idea. Of course, I then spend a significant part of the next day in a fog, yawning and wondering how to catch a nap. It is quite remarkable how fast you can fall asleep almost anywhere when you are sleep-starved.

Why were we made to need sleep? It seems such a waste of time when there is so much to do. As Edgar Allan Poe said, "Sleep... Oh! how I loathe those little slices of death." But insomniacs will tell you that they desperately miss "wasting time" with more shut-eye. Sometimes it leads to desperate behavior, like sleeping in the underground parkade in your car, or pulling over on a side street to catch a catnap, hoping no one thinks that you died there.

Watching PJ as he slept that night reminded me of how vulnerable we are when asleep. Would we sleep if we did not have to? Surely, we would be too afraid to risk it. Bad things can happen to you while your eyes are closed and senses dimmed, defenses down as minds retreat to some faraway imaginary land. If this were not a natural restorative state we would likely have laws against it for fear that, if indulged in to excess it would result in unproductive members of society.

But alas, I remember my mother's bedtime salutation, "Sleep tight, and do not let the bed bugs bite". I always wondered what that meant. "Tight" did not sound like a comfortable way to sleep. And more than once I found myself wide awake wondering how big "bed bugs" actually were. Of course, now I do "sleep tight", often waking with muscles clenched and no idea how they got that way. At least I do not need to fear bedbugs. Thankfully they rarely make it into Canada, and do not survive long in our climate if they do.

Maybe I am alone in all of this. For as F. Scott Fitzgerald said, "It appears that every man's insomnia is as different from his neighbour's as are their daytime hopes and aspirations."

Doing Less More - The Hated Art of Saying "No."

Just do it! All! Now!

But what if I can't keep doing it all?  Am I doing less more?

I hate the word "No".  It means a choice has been denied, a door closed, an adventure abandoned, or an idea left unexplored.  "Just Say No!" works as an antidrug campaign title, but admit it, doesn't it cause a stir of rebellion.  Doesn't it nudge you to say "Yes" anyway?  Why is that?  Why is saying "No" so difficult for me?

Maybe it is related to what my daughter calls, FOMO, a disease that causes your head to spin, your heart to race; it exhilarates and exhausts me all at the same time.  FOMO?  The 'fear of missing out'.  You know.  Friends are hanging out at Wendell's Coffee shop, the green, earthy, organic reborn hippy place in nearby historic Fort Langley where bikers, bicyclers and bipeds congregate.  Or Michael Buble (sorry Mike, I don't know how to get the accent on the 'e') is in concert and everyone, or so it seems, is asking if you are going.  Or your boss tells you about his contact that can get you and your spouse a balcony suite on a last minute, 4-day, 5-star cruise on the 'Celebrity of the Seas' down the west coast to San Fransisco for $129 each.  How can you say "no"?  As Nobel Prize winner Kofi Annan said, "To live is to choose. But to choose well, you must know who you are and what you stand for, where you want to go and why you want to get there.”

The word "no" should be easier to say than "yes".  It is shorter.  But alas, it is the most difficult word in the English language for me to pronounce.  "Would you serve on this charity board?  It does great work and you could really help it realize its potential."  "I have a friend who is in serious trouble.  He has been to 3 other lawyers but they just didn't do anything and took all his money.  Can you help him?"  "Hey mister, I have not eaten today and could sure use a toonie to buy a cheap lunch.  Can you spare a couple of bucks?"  "I just heard about an investment in Latvia that is guaranteeing 33% return on your money in 3 months.  There are only 3 opportunities to get in?  Are you game?" 

YES!  Even when I know the best answer is likely "no".  "Just because I can does not mean I should" I repeat like some addict.   There are literally hundreds of chances to say "yes" each week.  Many of them are good things to say "yes" to.   But not necessarily good for me.

FOMO and my inability to say "no" may have been easily disguised weaknesses in my once youthful, boundless energy.  But Parkinson's disease has introduced an unmistakable note of caution.  I now need to say "no" more often so that I can say "yes" when I need or really want to.

There are several reasons I find "no" gets held captive in my vocal chords.  Some are laudable, some are understandable, while others are downright embarrassing.

I feel good when I am given the opportunity to help, to solve a problem, to 'wear the cape'.  It is affirming to be recognized as being in demand or recognized as an asset.  Let's face it. it feels good to be wanted.  It feels great to do good.  And even better to 'ride to the rescue' of some disadvantaged soul, leaving life's drudgery behind.  But do I say "yes" to feel better about myself or to improve my approval rating.

Sometimes I am simply a creature of habit who says "sure I will" before thinking.  I trained as a volunteer fireman and lived in the Vernon firehall before I was married.  Now that was a kid's dream come true.  In the middle of the night I learned to be very quick to react to the fire bell so that even if sound asleep I was out of bed, into my boots, canvass pants and heavy coat, and on the truck wide awake in less than 1 minute, helmet in hand, listening to the dispatcher squawk out the address of the fire over the radio.  The height of embarrassment was to miss the truck.  Still today I find myself having the same 'firehorse' response to new opportunities that come along.

But with PD there is the need to measure the cost of a careless "yes".  Maybe there always should have been, but I was often too starry-eyed in the glamour of some new adventure to see the toll it took on me, my family and my other commitments.  So I now recognize, at least if my logic is functioning, that discretion is the better part of valour, and "no", while not a possibility-filled word, is necessary so that I can say "yes" longer.

I know more to say no more and just say yes to know more less.

Less is more.

Ludwig Mies van der Rohe

Hearing Aids, Humility and Parkinson's Disease

Leaning over I whispered to the lawyer beside me at the counsel table, "Can you hear the Judge?" He looked at me quizzically and nodded. Now what do I do! It was an important case and I was representing several major clients who could lose millions of dollars depending on what the Judge was saying. I thought objecting or putting up my hand would be a career-limiting move in the lawyer-crowded courtroom. But even with my hand cupped to my ear all I could pick up were mostly muffled words. I was 40 years old and seemed to be going deaf.

Hearing aids have been an embarrassing reality for me ever since. When I realized that others were hearing what I could not, such as in Court that day, I had no alternative but to see an ENT specialist. The diagnosis; Otosclerosis. For those who care to know, it the growth of bone in the middle ear affecting the stapes – like arthritis of the ear bone. Beethoven and Howard Hughes had it, as does Frankie Valli (maybe that explains the falsetto - you have to be older than 40 to get it). The choice was clear. But I was bothered by the "deaf and dumb" stigma. I feared those strap-on earmuff hearing aids. Was not this all something for old folks? Little did I know that the same fears, stigma and misunderstanding would hit me a short time later in life in the guise of Parkinson's disease.

I did not choose my hearing loss that has resulted in the need for my increasingly noticeable hearing aids. I cannot even blame it on playing too much Led Zeppelin at 120 decibels through headphones. And despite my misspent youth, neither did I choose nor facilitate the onset of PD and its increasingly noticeable tremours and other manifestations. Both embarrass me and leave me feeling self-conscious. But why?

It occurs to me that both of these shortcomings, the loss of hearing and dopamine production, confront and do damage to my fragile, I-can-do-it-all false pride. A pride in an image that I want to project in order to protect disclosing the real "me". There is something that is whispering (or in my case, shouting), "People will not accept the shaky, half-deaf person that I am."

The resulting conviction is that I need to get over my "image", and learn honest humility.

Embarrassment is a curious thing. Most of us get embarrassed if we clumsily trip upstairs or take a spill while showing off. But those who struggle with balance because of Parkinson's and do a face-plant due to what others not so secretly characterize as an apparent lack of sobriety or agility are also embarrassed. Must they be?

What am I learning from being embarrassed? First, I now try to slow down a bit before I jump to conclusions about the shortcomings in appearance or behavior of another. This is often thinly veiled prejudice; judging without the true facts or applying a false standard. Second, when other people misjudge me (at least to the degree I know about it) I try to give them the benefit of the doubt. It is rarely mean-spirited criticism of who I am, but more often a lack of information, thoughtfulness or even self-esteem on the part of the observer. Third, I try and recognize that the difference between humility and humiliation is that the former results from an understanding that we all have shortcomings and weaknesses, whereas the latter results from a misunderstanding that shortcomings and weaknesses are unacceptable in others and ourselves.

I do not expect to suddenly stop being embarrassed about my hearing aids and PD symptoms. But if, as is said, humility is a virtue, then inevitably schooling is needed to achieve it. “Life is a long lesson in humility” (19th century Scottish dramatist, James Barrie, the originator of Peter Pan).

Rain and Parkinson's Disease

There are hummingbirds hovering,darting and dancing in the rain just outside the kitchen window. Squirrels scurry across the lawn with new found treasure tucked in their cheeks. The whitetail doe and her two fawns hang back under the canopy formed by the big Chestnut tree, avoiding the open spaces for fear that the wet long grass and the dull applause of the summer shower will prevent even their extraordinary hearing from picking up an attacker's advance. Rabbits hop under bushes and shake the raindrops from their fur and flopping ears.  Pastoral.

But despite the peace of it all, I think of the disappointment of would-be campers needing to postpone weekend trips, and, more sadly, tearful brides fretting about outdoor weddings that hastily need to shift into Plan B.  The greyness of the day shrinks expectations and creeps into emotions.

For me, I welcome the rain and the chance to spend the day inside.  A sunless, summer Saturday feels just right.  That may seem strange to many, as summer is short in Vancouver to start with.  But things change when Parkinson's disease moves in.  Fatigue can easily pile up over a stressful work week.  Add a week of nights when tossing and turning disrupted my snoring and a restful weekend is my strong preference.  It feels like I have held my breath since last weekend, and my lungs are about to burst.  Quiet time, just listening to the thousands of drops making up an orchestra of percussion as they strike with different sounds on different surfaces.  Mug of coffee in hand there seems no greater priority than to peer into the tranquillity of my beloved backyard.  I can breathe again.

As much as I love challenges, I cherish time to rest, passively observe and just think.   A sunny summer day tends to pester me into action regardless of my breathless state.  It sarcastically chides me saying, "Surely you are not staying inside on a day like today?  What a waste!".  The rain extends grace to those of us that coasted into Friday evening on fumes.  The rain is a refuge for thinking time. 

Until January of 2006, my batteries were charged quickly and held their charge longer, with a reserve pack that had lots of punch if needed for overtime.  But PD and aging change all that.  I need a long nap or two over the weekend to feel like there is any spark in the battery.  Guilty as I may feel about it, rest has become a necessity.  So I read, watch a mindless movie, write or read blogs or plan my week ahead.  Ironically, staying up late is even restful, as it shakes up my weekday routine.

But with the blessing of a park-like backdrop with nature's drama unfolding in full view of the kitchen windows, life is good again.  I breathe deeply.  I am restored.  Rain, like Parkinson's, gives me pause to rest, listen and think.  Real re-creation happens in these times..

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.

Heat, Rain and Parkinson's

40°C (104°F), partly cloudy and 29% humidity. Palm Springs on a summer day. I love it. As do cacti, geckos (or is that gecki) and hippopotami playing nose deep in a local mud-filled wadi (if there were any). Some say that heat is better for my Parkinson’s disease than the cold end of the temperature spectrum. I know that my PD does not do well when I am cold. Shivers on top of tremours and freezing on top of stiffness makes my teeth chatter like an ice cube being rattled around in an empty hi-ball glass.

I have always loved the heat. Growing up in Canada’s Okanagan Valley (today: 34°, partly cloudy and 12% humidity) I learned that the heat of the summer meant it was was time to max out playing tennis and riding bikes.  No one cared about sweat or sunstroke. It was dry heat after all. So being in the California desert to deal was not a hardship, at least not due to the heat.

Of course, you need to be prepared for the weather, whether you enjoy it or endure it. A parka, mittens and insulated boots for the snow. Shorts, golf shirt and sandals for the heat. And an umbrella, slicker and waterproof galoshes (or maybe even hip-waders in Vancouver) for the rain. Remarkably, the body underneath the garb does just fine adjusting to the weather.

But our attitude about the weather ends up being the toughest thing to change. It seems that, regardless of our incredible physical adaptability, mental adjustment struggles, and often fails, to follow suit. Every climate in every country seems to elicit complaint. Sweltering humid heat in New Delhi, unrelenting rain in Seattle, fog as thick as cotton batten in London, biting cold in Moscow.  Still, people survive the meteorological extremes.  Most of us actually even choose to stay where we are, complaining all the while.

The same can be said of those of us who battle our body’s current Parkinson's "weather" and long-term  forecast. The PD prognosticator that "weather" predictions are for: “Intermittent shaking today, increasing at times in the days ahead, with the likelihood of sudden stiffness storms developing over a wide area. There is a chance of freezing movements leading to potentially widespread and severe imbalance and falling. Care should be taken as a high stress pressure system is fast approaching, making matters worse as the front settles in and worsens.”

The weather system ahead of us may not be full of sunny, cloudless skies suitable for the picnic we planned, but rain or shine, given the right attitude, there are lots of ways our bodies can adapt. Let's get outside and live to the fullest despite, or even because of, the weather.

Sunburn anyone?