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.

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...

Why Are You Shaking?

The whole room went silent and looked up as the blonde virtually exploded through the double doors leading into the lounge. She could not help but demand complete attention, intentionally or not. Her mischievous hazel eyes immediately assessed the occupants. I was delighted, if a little nervous, as she literally ran to me with arms outstretched, her long hair tousled and bouncing, mimicking her obviously carefree demeanor. Her smile was broad and genuine, and instantly took over her whole face and spread infectiously to all faces in the room. The petite beauty literally launched herself at my neck from several feet away. The hug was genuine, uninhibited by the sudden silence and stares being focused on her affectionate display. And with seemingly perfect timing the coquettish kiss that followed was a signal that the introductory affection was over and that she would be satisfied with my arms being loosely circled around her. Those in the room could return to their pockets of conversation, looking over at us occasionally to reassess her placement on my lap.

But the loud hum of conversations had not resumed long when a second, somewhat taller and more reserved, but just as beautiful, young lady entered the room. She was not as unabashedly boisterous but her entry was noticed by everyone. Her intelligent green/brown eyes signaled that she had purposely delayed her entry to avoid a competition of brashness with which she would not feel comfortable. Our eyes met and I was immediately embarrassed by the territory commandeered by the blonde in my arms. But the brunette did not let the apparently exclusive embrace dissuade her as she strode through the crowd and squeezed in close, placing her arms around my neck with obviously sincere affection. The competition for my attention seemed good natured and neither demanded exclusivity. They seemed used to vying with each other in their own distinct style. I felt both comforted and conflicted, but I was beaming inside and out to be the focus of attention of these much younger females.

While not immediately obvious, studied observation would have confirmed that the young ladies were sisters. Hailie, the blonde, is 6, and Taylor, her sister, is 9. They are the children of my nephew, Jesse, and his wife, Crystal, and we have a special bond that has grown since they were infants.

The occasion was a family gathering at Ocean Shores, a resort area on the Olympic Peninsula of Washington State. The 17 of us (4 generations) used the large lounge at the beach front condo complex for games, visiting, some meals and just hanging out. When the girls were around they were often next to, on, being chased by or wrestling with, me. And I loved it. And them.

It was in one of the more sedate moments that my grand-nieces (I think that's right) almost simultaneously inquired, "Are you cold Uncle Bob? Why are you shaking?". It was a logical question for two young girls unfamiliar with disability and no sophisticated diplomacy (thank goodness). Just unashamed concern and curiosity.

It is, at least to some extent, what many others wonder when they noticed my tremor. It is often the more observant that types I notice watching my hands and their face gets that "Hmmm...wonder why his hand is shaking?" This was the first time someone had asked me so naively about my PD symptoms. A very few others have asked me straight out if I had Parkinson's, but usually it has been someone who knew about the disease and spotted the telltale signs.

It is one thing to answer two adoring and adorable little girls, but what about adults? Seems to me that the response is the same. Can we who have this sooner-or-later obvious disease remain unashamed and direct in our response? As I have said before, it seems that the more comfortable we are with our disability the more comfortable others will be with it. Nothing like kids to teach how to explain what we would rather not have to.

Whether a child or adult, how to discuss your diagnosis is always topical.