Parkinson's and the Dentist's Chair

Going to the dentist is just one of those necessary regular visits I must make that increases the visibility of my Parkinson's symptoms. It confirms that I have to keep my sense of humor.

It was quite obvious that neither Michelle nor Dr. Ray looked anything like Dr. Inkster, my dentist when I was 8. And little about this morning's current surroundings bore any resemblance to the second storey walk-up office with its brass plate announcing that the tiny waiting room belonged to Dr. J.F. Inkster, D.D.S. Inside there wasn’t a single magazine a kid could read to calm his jangled nerves. In comparison, Dr. Ray's office was bright and modern with an open airy feel, no internal doors (except for the bathroom), skylights and large windows with a street level view. Hundreds of magazines from Reader's Digest to Golfer's Digest waited in his spacious waiting room that had a special corner dedicated to kids.  The sights, smells and sounds of dentistry have changed dramatically in the past 50 years.

Despite the changes, I still suffer from dentophobia. I shake when I sit in what always seemed to me to be a converted barber chair, staring into a light that could do double duty at Yankee Stadium. The flow of adrenalin always accelerates as I get elevated and reclined at the same time, and then told to "relax and open wide". The major difference between my childhood experiences with the dentist and present is that I don't know if I am trembling out of fear any longer or just because of my Parkinson's Disease. Maybe it is both.

Despite the easy conversation skills of both my young dental hygienist and dentist (do they learn that in school?), I am still totally unable to control my tremors. My right arm jerks like that of a marionette controlled by a hidden puppet master. It is more than a little awkward sitting on your right hand when you are lying down in the grip of a sculptured lounger. My right leg immediately gets as stiff as a mannequin's, with my foot looking pointed as if it was caught stretching out the Achilles tendon. I try to relax. Michelle is more than patient as she checks and cleans my teeth. But try as I might, I return to my stiffened and vibrating condition within moments.

Dr. Inkster had a humorless disposition and could not carry on a conversation with an 8-year-old to save his bicuspids.  Despite the open window an ether-like odor permeated his old dental office. To compound matters, Dr. Inkster did not wear a mask.  A kid didn't have a fighting chance against his smoker-stained breath. Surely a dentist would know what it is like for me to be forced to breathe in (through the nose due to various paraphernalia occupying my other breathing orifice) someone's halitosis emitted from yellow stained teeth for what seemed like several hours. It was hard to hold my breath that long. Despite my impaired ability to smell, I would not notice anyone's bad breath even assuming they have any, I do catch a whiff of the peppermint goo Michele puts in trays in which my teeth take their fluoride bath. But the scent is not enough to compensate for the feeling that I am slowly drowning when the sludge starts draining down my throat as I accidentally squish my teeth together.

Evaluating the situaion, I think it is the high-pitched jet engine whir and whine of those dental instruments of torture that bring back my terror and set off my tremors each time I enter a dentist's office. In some ways, not many, it is worse now than in Dr. Inkster’s office. In the old days, the dentist would remove the instruments from your mouth long enough to allow you to breathe and lean over to spit into the white, round porcelain, permanently flushing spittoon. Nowadays, no sooner do they remove one set of tools from my mouth than they are replaced by a small but powerful replica fire hose squirting high-pressure water point blank onto totally sensitized teeth. When it gets pulled out a small chrome wet/dry vac takes its place, attached no doubt to some 250 hp suction-producing motor in the other room. I feel a desperate need to swallow or somehow hide my tongue lest it be sucked out or given a hickey on its vulnerable surface. It always strikes me as comical when some well-meaning dental assistant notices my vice-like grip on the chair arms and asks, "Are you doing okay?" I want to respond, "Oh yes, I could only be doing better if this were a day spa and I was having my toenails sheared off by a hammer and chisel.”

Michelle and Dr. Ray cannot help it if I become a paranoid schizophrenic upon walking into an instrument-laden cubicle with a chair that seems to only be missing its chest, waist and leg straps. It brings back vivid memories of Dr. Inkster leaning over me with a needle that was probably used for horses during the off hours and saying, "This will only be a small prick in your cheek ". After extracting the weapon from my mouth, wiping what seemed like blood from its tip with an already stained patch of gauze, he would go right to work as if the elixir he had pumped into my then throbbing jaw was somehow doing its numbing work instantly. Of course, I complained incessantly, as much as was possible with my mouth agape. But he was unyielding and refused to recognize that I was feeling every bit of the grinding, scraping and drilling he was so studiously undertaking on my defenseless molars.

Upon reflection, I am confident that the fear-based shaking I did as a kid when faced with the dental punishment for not brushing my teeth and eating too many toffee bars was just as pronounced as my tremors are now. Except that now Michele says I save her some effort as she can virtually hold the cleaning tools still as my head does the moving for her. She comments that I don't need an electric toothbrus.  I respond by saying, "True, but could you make sure you give me a left-handed toothbrush when we are finished. I am wearing the enamel off my teeth brushing with my vibrating right-handed one."

Now about the challenge of flossing...

Leaving a $300 Legacy?

What kind of legacy will you leave? More than $300?

This was the question I asked as I mounted the stage and stood at the podium wondering how to say something significant in less than 10 minutes. The crowd was mostly older, 60s and 70s, but evident among them were the young men and women who were the focal point of the event. The seniors looked earnest, as if they were, like me, well aware they faced a much shorter future than the students sitting at their tables. The young people also looked earnest, but with a different expression. It was one of hope and opportunity in the frontier of the future yet to be. I was there as an alumnus, sharing the commitment our family had to providing scholarships to students who attend Trinity Western University, and encouraging others to do likewise. I spoke about legacy.  It had come to me while doing chores in the backyard that morning, madly scrambling to finish raking leaves while at the same time searching my aging and somewhat outmoded mental database…more like a creaky Rolodex… for a topic to talk on).

At the same time as I was speaking, I was painfully aware of my uncooperative quivering hand clutching my belt as I suppressed the question that lurked in the back of my mind. What kind of legacy can a person with Parkinson's disease leave?

We all will leave a legacy, even those with Parkinson's. Perhaps more so.  But what kind of legacy?

It is amazing how many ways in which the lives that we live might leave an indelible mark on others. Let me challenge you, as I did myself this past weekend, to see our lives as significant, one way or another.

For some the easy legacy to leave is money. That brings me to my $300 legacy.  It was in the form of a 1970 graduation scholarship that was invested in me in order that I could go to college. I was an average student who was not challenged much by school, wore his hair down to his shoulders and drove his blue Volkswagen Beetle fast and recklessly. I would not have impressed many, but I often remember thinking as I climbed to the stage 39 years ago to receive that relatively small scholarship, "It is a good thing they do not really know me.". But little did I realize at the time how that small scholarship would enable me to begin an undergraduate degree, which led to a law degree, that led to a modestly successful career (30 years so far) of fulfilling service, and the pleasure of building a law firm. Ironically, or perhaps fittingly, it has now led to the ability to annually contribute so that others might have the same opportunity.

While many struggle to even afford to pay for their Parkinson's meds, everyone can leave a legacy of friendships and family. Whether we are grandparents, uncles and aunts, brothers and sisters, or close friends, we will be remembered for the contributions we made to other people's lives. It is a legacy of relationships we will leave. Investments made in people.

For those of us seeking to confront the challenge of Parkinson's disease, will we be remembered as fighters or complainers? Will people remember us for our constant recitation of pains and pill dosages? Or will they think of us for having imparted some of the wisdom that comes from fighting the battles, and even winning a few?

I am extremely thankful for the people who invested in me. I owe them something. I need to reinvest in others. I need to leave memories minted in the minds of others that encourage, not discourage. Recollections that lead to laughter, not sadness. I need to model perseverance and courage so that others who follow and are forced to face the bully of Parkinson's are better prepared.

I was speechless as I left that stage, realizing that I had been speaking most loudly to myself. Now that is a challenge!

Testing, Testing...Are You Out There?

One of the difficulties with writing blogs is that you often feel like you are whistling in the dark.  It feels like the right thing to do, but you are never sure whether anyone is out there listening.  Now, given that I have been "testing" this blogging idea for 60 days (since August 28th) and written 24 blog postings, it feels like an appropriate time to listen to the feedback.  While I must admit I have enjoyed my part, trying to be creative in communicating my life's experiences with Parkinson's as they happen, I am uncertain as to whether I am acheiving my primary goals.

When I started this experiment, I felt there were very few blogs focused on encouraging others who face the challenges of living with PD or some other degenerative disease.  I wanted to be an encourager.  I also wanted to explain at a personal level what it was like living, and trying to live better, with PD.

All that said, I would like your feedback, which can be directed to my email address by clicking on bobkuhn1@gmail.com or noted in the Comment section below.  Now before all you nice people tell me what you think I want to hear, please believe me when I say that I want the straight goods (I can take it, I am a lawyer, remember).  Consider the following questions as a guide:

1.  How can the Positively Parkinson's blog be improved?
2.  What issues would be of interest to you (remember that this is a family show)?
3.  Would you like hearing about/from others living (well) with PD?
4  What about hearing about/from spouses/caregivers living with people with PD?

I will take the responses seriously (good, bad or ugly), and be responsive to your feedback

Thanks for taking the time to respond.

Bob

Parkinson's, Helicopters and Dirt Biking

It did not seem like we were traveling one hundred miles an hour until we got close to the mountains. While we were over the multi-shaded green fields of the fertile valley, it was if the chopper was floating slowly a mile above the Fraser River. From my vantage point, sitting next to the bulged-out plexiglass door, I found myself glancing everywhere at once, perched in the sky like a much older Harry Potter, caught up in a game of Quidditch, flying high on his Nimbus 2000 looking for the snitch. The shudder of the helicopter, my tremor and the anticipation of the next day all merged together in the evening ride. This was the way to start an adventure!

The four of us "slightly older" men were soon swooping down through the dusk to a small town, Tulameen (population 250), snuggled by Otter Lake in the Cascade Mountains of British Columbia. It was the beginning of a short adventure that promised to challenge me, and not just because my Blackberry was out of range.

The next morning started somewhat late, after an uncharacteristically restful night’s sleep breathing in the crisp and cold mountain air through the cabin window. We scarfed down a breakfast that only men could appreciate after they cooked it themselves, supplemented by café lattes made on an espresso machine brought up just for the luxury of it.

The bright yellow, red or blue 250 cc motorbikes outside screamed for our attention as they were started and tested. They were like wild broncos, saddled and waiting for someone to climb on and ride into the treed hills to explore or just escape the stresses of civilization. As I chose my mount, the powerful machine gave out a whine and growl, leaping ahead as if leaving the starting gate while I clung to the handlebars with a death grip. The surefooted "steed" sprang up rutted roads, over sharp boulders and around unyielding corners with nimble knobby tires gripping and scratching at whatever surface was available. It was as if they instinctively knew that one false move would send its wide-eyed rider over the handlebars and into a tree or over a cliff. It was pure exhilaration, at least when it was not humiliation due to being unceremoniously "bucked" off the bike due to my misjudging the terrain or just losing my balance.

There was only one occasion when I nearly became an adventure statistic. Going insanely fast down a steep narrow road, straight up on one side and straight down on the other, I was passing everyone else, banging and bumping over rocks and ruts with ever-increasing speed. Beyond control and in panic mode I desperately tried to remember the instructions I had been given just moments before. “THINK! THINK! AM I SUPPOSED TO USE THE FRONT BRAKE, THE BACK BRAKE OR BOTH?” I had little opportunity to experiment and was only ultimately saved insult and injury by hanging on for dear life until I somehow came to a breathless stop. My shaking from fear and Parkinson's were indistinguishable, both being about 8.2 on the Richter scale.

Despite the motto of our fearless leader, "all the gear all the time", there was enough danger of suffering mortal harm that I found my senses became finely tuned, spotting almost every hump, bump and stump in the path ahead. Despite the intense pleasure of each moment, or perhaps because of it, my symptomatically stiff shoulder and arm muscles seemed to be clenched indefinitely. Parkinson's somehow became irrelevant.

By the end of the ride, I began to feel comfortable, pushing the powerful bike faster on the straight-aways, harder into the tight corners, even taking little jumps when I could. I was beaming when I got off; bushed but beaming. I knew that even if dirt biking was only a one-time experience, it was a great one. I was confident that despite the degenerative disease there would be an abundance of adventure ahead. I just needed to look for it and be willing to take the risk.

Feeling a Little Shaky

"Order in court" the clerk abruptly announced, as if those of us in the courtroom were soldiers waiting for a commanding officer. I jumped unnecessarily, but characteristically, having become a little edgy lately due to lack of a good night’s sleep. Immediately my tremor spiked up a notch or two, setting me to vibrating like a paint can in the grip of one of those shaker machines at the hardware store. Bad timing!

Everyone stood up in traditional respect for the black robed judge who strode through the security door in the back corner.  She climbed the three steps to the dais and, half bowing, half nodding to those in attendance, unceremoniously plunked herself down in the overstuffed red leather chair behind her bench. It was 9:30 Monday morning and another day had begun in Court of Appeal Chambers. Unfortunately, the comparatively small area behind the "bar" that separated the public gallery from the remainder of the room had too few chairs to accommodate the lawyers who had gathered to gossip while waiting for Her Ladyship to arrive. As a result, there was a professional sort of scurrying that happened when she did arrive, as if the music had stopped in a game of musical chairs. I had come early and secured my favorite spot, close to the door so that I did not have to climb over anybody to get out.

As the judge's list of matters was being read by the court clerk, I felt my right leg bouncing up and down as if I was at a barn dance marking double time to a polka, while my right arm seemed to be furiously strumming an imaginary banjo. But before I could survey the room to determine who might be watching my musical miming abilities, number 7 on the judge's list was called. It was my turn.

It was not all that difficult an argument to make, but if my noticeable tremor was misinterpreted as fear you would think this was an appearance in front of all 9 judges at the Supreme Court of Canada. Sitting on my hand proved useless and short-lived as I had to stand to make my presentation to the judge. I chose what seemed to be the best alternative and used my hands more dramatically, gesturing and moving my papers about at the risk of spreading them on the floor around the small podium.

Fortunately, it took little persuading to get the order I needed, my opponent being firmer in stance but much less prepared. Áfter victory was pronounced by the judge I gathered the papers that I had needlessly shuffled, stuffing them into my black barristers bag, and marched as confidently as I could out into the hallway.

It would have been fruitless, and a little foolish, to stop at any time to explain to the court that I had not taken my medication in the morning due to my overly zealous and lengthy preparation. Although the idea of saying, "do not mind me, I am having a bad day with my Parkinson's", had crossed my mind, I was concerned it might have been mistaken for a lack of confidence in my argument that would follow. In the end I tried, without any success, to just ignore it, hoping that everyone else would as well.

As I walked out into the cold October rain I realized that as long as I was moving no one really noticed my shaking. Besides, I imagined halfheartedly, it could just be excessive shivering in the cold. But I knew that the events of the morning would increasingly repeat themselves in different environments over the years to come. It will become necessary to learn how to accept what my uncooperative body is doing, despite the likely discomfort of others with their questioning looks.

This is part of the PD progression that I have not yet resolved how to handle. Trying to hide the symptoms seems immature, even foolhardy. But it was a natural response, and I am now left wondering what other response might "work".

It was later in the day, while talking with another member of our firm, that I realized it was the bully, fear, that I need to wrestle into submission. Fear that I would be viewed as less capable, less competent, less confident; all necessary traits of my trade. Fear that all the things I had worked 30 years to build would crack and finally crumble under the influence of my own personal quaking.

I cannot live in fear, cowering in a cave of my own making. I must have faith and courage, both of which are often in short supply. Days like today prove that fear is often based on lies. I am the same person as I always have been; I am just feeling a little shaky today.

Parkinson's and the Fear of Forgetting

“How are you feeling?” I asked him too casually.

Fred and I were having coffee as the early afternoon sunshine warmed us through the large kitchen window. It was unusual weather for an October day. It was also unusual for me given that it was the middle of a workday and I was chatting, seemingly aimlessly, with an elderly friend as if I did not have any billable work to do at all. The opposite was true of course, but I had business near his home and was inexplicably drawn to stop in for a quick coffee with Fred. At his age and health, as well as his state of mind, and my too busy schedule, I was not sure I would see him again, at least not soon or be able to converse with him in the easy way we were doing that autumn afternoon.

"How are you doing?" I asked again when he hesitated in response to my question. Clearly troubled about something he slowly drew in his breath in a labored fashion. The worried expression on his face immediately made him look older than his 80 years. “Well” he said, "I am not as compos mentis as I once was. You see, I forget things. I lose things. I just cannot remember like I used to." When I responded, "Join the club!", that discussion ended and we moved on, the customary cheery smile replacing the anxious frown. But soon examples of what he had been trying to explain began springing up with embarrassing frequency. He asked me how my children were doing and how old they were four times during our time together, each time as if the queries had never been asked before. I felt mildly frustrated at having to repeat myself, and guilty about my internal reaction and impatience. When the phone rang, he tried to explain to the caller who he was visiting with. Finally, with a pained look on his face, he turned to me and said, "What is your name again?"

Although I was simply an observer, I felt Fred’s anguish, the humiliation and the discomfort with something happening that neither he nor I fully understood. It was something frightening. It was the fear of forgetting.

This episode with my friend, Fred, had an immediate impact. It beckoned memories of that same look on my father’s face as we drove along very familiar roads in the Coldstream Valley farm country where we had lived for all of my childhood. He looked at me confused and asked me where we were. It was like a jolt of electricity running up my spine.

Is this my future? Am I also destined to begin peering through a mental fog at some point? In the years to come will Parkinson's disease fill my head with cotton, as it has begun filling Fred’s mind?

How does one grapple with the fear of forgetting? Since cognitive impairment has a greater potential of striking those with Parkinson's, it is not groundless apprehension.

First, I asked myself, "Is there anything I can do about it?" The answer, like most answers given by lawyers and neurologists alike, was "Maybe". As unsatisfying as that may be, it is better than "No!". Studies have shown that regular mental exercise helps fend off the fear of forgetting to some extent. So keep those crosswords coming!

Second, I recognized that it would be unwise for me to let the fear of future forgetting paralyze the present (although I shudder a bit when I hesitate too long in order to remember someone's name). Focus on what I have, not what I might possibly lose.

Finally, I decided I needed to spend more time with my friend, Fred, and others like him. Facing one's fears, even when reflected in the face of a friend, allows us to nurture courage and compassion. Maybe it is like a blood donor donating blood on the premise that one day he may need it himself.

I was sincere when I asked Fred how he was feeling. The least I can do is hang around for the answer.

Parkinson's, Wine and Old Friends

Relationships with old friends are like wines; the good ones usually improve with age, becoming richer, deeper and more intoxicating, while the others of lesser quality lose their flavour. This was proven last night.

It actually started 30 years ago, in September of 1976, when some 179 mostly young students (me being one of them) met for the first time in classes or the "Interaction Area".  Someone lacked creativity, but that is what they called the lounge area in the bunker style building of the University of British Columbia Law School. Three years later, almost all of us were unleashed to "practice" law on an unsuspecting public. Can you imagine the fear of those first clients if the truth had been known? "Hi, my name is Gerald and I will be your lawyer today. I have a law degree but no experience so I will be practicing on you."

Of course, we learned about the law at law school. However, we never learned how to actually be lawyers until we began to "practice". In retrospect, it was like handing a scalpel to medical students, who had never performed an operation or even watched one (except on TV), and suggesting they go find someone to "practice" on. Young lawyers do not get supplied with cadavers for “practice”.

Fast-forward (and I mean fast) 30 years to a gathering of those same people, at least a reasonable sampling of them. The scene at the 30 Year Reunion of the Law School Class of 1979 was fascinating for numerous reasons. The usual differences in appearance were stereotypical. Some had aged well and others, well, they had aged.  Some put on weight and others looked like models.  Some were in Armani suits while others were in jeans.  There was the array of careers from personal life coach to an expert in “meteor law” (true!). There was a mining executive with a UBC librairy named after him and a significant number of judges.  And some of our class did not come for obvious reasons.

I was charged with giving a tribute to our classmate and friend, Hugh. As part of that 'in memoriam' I read my October 1, 2009 blog entry, "Round Multicoloured Bruises", which off-handedly mentioned my Parkinson's disease. I did not want to make a big deal of this disclosure, but I did not want to hide it either. I had tried to prepare myself for what I thought might be the responses. I knew that there would be no collective inhaled gasp, lawyers are far too controlled for that, but I was anticipating a variety of responses. Like uncorking a bottle of wine, I honestly did not know what to expect.

I was struck again by how awkward even old friends seemed to handle the news (only a few in the room knew of my diagnosis). Despite trying to be casual and take a "it's just a card I've been dealt" attitude with a chaser of "lots of people have it worse", few classmates mentioned it. Maybe they did not hear me, as apparently I was reading too quickly in my attempt to keep to my time allotment (something most lawyers find difficult, as was ably demonstrated by others later in the evening). Those that did comment seemed to have difficulty with words (not a common occurrence for members of the legal profession).

It seems to me that dealing with a person who has a disease or disability is difficult, even for my friends. There seems to be helplessness felt that does not sit comfortably with those more at home with corporate mergers, complex court cases or solving problems generally. PD just does not fit. And it cannot be hidden (at least for long) before an explanation needs to be given for the symptoms. So I had concluded that the risk had to be taken.

It may be groundless, and even a touch of paranoia, but I drove home wondering if I had just been labeled by most of my classmates.

Like the bottles of wine we auctioned for a law school scholarship fund, we all seem to want to know names and details so that we can define what, or who, is inside.  But it is time, which ages all things, that will provide proof of character and content.