The Mask

The flesh-colored, latex mask felt like a thicker version of the black, plastic masks we wore as kids while playing Zorro, brandishing our homemade swords and shouting, "En garde!" (not knowing the difference between Spanish and French). This one was initially warm and supple as it was laid on my face like a towel at a spa. But as I stared at the ceiling through the eyeholes, the substance hardened and it became clear that the mask did not have disguise as its purpose. Instead of being secured around my head, it was securing my skull to a frame, making it immovable for the one-hour duration of the procedure. The picture of a Frankenstein-like character, strapped to a gurney, came to mind.

This was not the first time I had been brought to this small room tucked away in the basement of the University Hospital. Despite what my amplified tremors might have indicated, I was not afraid. I knew I was in good hands as my head was slid into the "doughnut hole" of the Positron Emission Tomography (PET) machine. Fortunately, I had no fear of closed in spaces. It simply reminded me of being a curious youngster and poking my head in a culvert pipe or an oversized clothes dryer to see what was in there. But, this was no place for claustrophobiacs.

The procedure requirements had started out innocently enough; no food or water for at least eight hours and no Parkinson's disease medication for at least 14 hours. Then there was the mask, a little constraining but quite comfortable actually. The first PET scan was apparently to find out whether I had any brain to work with. Apparently there was enough cerebral functioning left to continue.

Now I am not generally anxious about needles; it is just when someone I don't know wants to poke me with one that I get a little tense. It didn't help much when I was the technician would be shooting a "tracer" into my bloodstream. The image of red-hot tracer bullets fired in the dark didn't really put me at ease. But without even saying, "you will feel a little pinch", the injection was over literally before I knew it. A "tracer" is actually a small amount of radiation attached to a dosage of medication, which is then detectable using the PET scanner. The goal: to find out how my impoverished supply of dopamine would react to different stimuli (in this case, grapefruit juice). All in all, I napped on and off for most of the time, being awoken to receive my "stimuli" through a long tube while the PET scanner was quietly whirring away around my head.

I did not need to be there. I had volunteered to be part of the study dealing with "Treatment Related Compulsive Behaviors and Impulse Control Disorders in Parkinson's disease". Now before you go jumping to conclusions, other than Scrabble, blogging, riding my motorcycle and pursuing adventures along the way, I exhibit no signs of compulsive behaviors or impulse control disorders. However, between 4 and 8% of PD patients receiving long-term treatment develop these complications. For some, it can be devastating. That is why it makes it worthwhile studying this problem.

Since developing Parkinson's disease, my awareness of the need for credible clinical studies has grown exponentially. Given that there is very little risk, participating in this study, and others, is one way I can fight back. It is a contribution I can make to the needs of others, like being a blood donor, an organ donor or just volunteering to help out.

I am looking forward to completing the six session study. Not because I am anxious to have it finished, but because I get to keep my mask. Something to show my grandkids and tell them stories about how I got it. I might even tell them the truth…when they get older.

The Problem with Being You

I had mistaken the soprano-like bird calls as coming from small hawks or even smaller songbirds that had failed to migrate south for the winter. The high-pitched cries just did not suit the stern magnificence of the two bald eagles, calling to each other as they circled before landing atop one of the 60 foot trees behind our home. It was a bone chilling, cloudless day, the temperature hovering near freezing, which meant the recent snowfall had become a crusty white layer on the lawn. The surprising sound of the two birds of prey cut across the brittle landscape, crisp and clear. As I listened again, I wondered to myself, "Perhaps they don't need to sound powerful just because they are powerful".  Still, as I stared at these regal hunters surveying their domain, I could not shake the mental image of a muscle-bound warrior with a squeaky voice. 

Bundled against the freezing gusts of wind, I had just completed vacuuming our swimming pool. Odd, I know, but just as the two eagles seemed to ignore November's blustery weather, so does the collection of windblown leaves, sticks and fir needles at the bottom of the pool. It was ironic to me that I was out in the cold maintaining a facility that would not be used again for at least seven months. I wondered if anyone was watching. I felt as out of place as if I had been hanging Christmas lights in the middle of summer.

Life seems full of inconsistencies, scenes that jar our sensibilities, leaving us pondering the puzzle piece that just doesn't fit. That is the way it is with my Parkinson's disease. In many ways I feel as if I am in the prime years of my life. I have been blessed beyond belief with family, friends and stimulating work that is both helpful to others and rewarding. Life seems to have created a springboard of possibilities. But as promising as the picture may look from a distance, closer examination discloses flaws and limitations, faults and pending failure. It is as if there are two Bobs; one ready for the adventures of the next several decades and the other stumbling along day by day, wondering when weakness will prevail.

I live with a type of schizophrenia; a lack of clear definition as to who I really am. The self-portrait seems to be sketched by two artists; one unstintingly optimistic, smiling and ready for anything, while the other is expressionless, frozen in fear of what is yet to be. There is a problem being "me".  Society dictates that, to the maximum extent possible, one should present a singular persona, preferably one that can be put into perspective at a glance. As Ralph Waldo Emerson affirmed, "…consistency is the hobgoblin of little minds…", and we all seem to have little minds.  We have a difficult time seeing the strong being weak, the wise lacking answers, the brave showing fear.

As a result, we suffer a lack of integrity, the state of being whole, and complete or undivided. Our self-concept is confused. We have a problem being who we are because we have a problem knowing who we are. The frightening truth is that I am both characters at once and the presence of Parkinson's disease demands a dynamic self-evaluation of who I really am. It is a moving target. It is not limited by who I feel I am, who I am told I am, who I have been or who I want to be. I am a person in process, partly enigma and partly self-evident. I am a collage of the incongruent. I am learning to live with the problem of being who I am.

Built to Fail

Frank and Pete, although they had never met, shared at least one thing, a respect for Classic cars, including Babe, my 1967 Camaro.

Frank is known as "The Alignment Man", literally. I got to know him shortly after struggling into Palm Desert having driven Babe from the rainy weather of British Columbia to the desert sun of Southern California. I figured she'd like it better down there, and I would likely drive her more than I do at home. En route we had lost 3 tires, one each day, due to the age of the rubber (apparently it's illegal for shops to put tires that are more than eight years old on a car). But even after purchasing 4 new white walls, Babe showed a suicidal inclination to veer left hand play "chicken" with oncoming vehicles. That soon led me to Frank's small 3 bay shop at the very back end a rundown, cinder block building in the poorer part of town.

Arriving early, there seemed to be no one around, although all the doors were open. But after a few minutes an old golden Labrador, followed by a tall, muscular man in his mid-60s, carefully stepped down from a circa 1960 RV parked in the corner of the parking lot. It was Frank's home; making for a short walk to work and a convenient and cost-effective security response. Frank walked with a stiff leg, looking every bit the Vietnam vet. It seemed to me that he was surviving in a back eddy of society, still suffering from the war wounds, both physical and emotional. Despite being unimpressed by the tiny, disheveled office that could have qualified for an episode of "Hoarders", I immediately trusted Frank. He clearly knew his classic cars. He seemed almost delighted in taking Babe on a test drive while I minded his shop. On his return he not only described the required fix in detail, but listed other unseen issues that would sometime need attention. After doing what was needed, and charging me a modest amount for the work, I asked him for the name of someone he trusted to check some mechanical issues I had noticed. His answer surprised me. With a redesigned tone he muttered, half to me and half to himself, "All my friends that know old cars are either out of the business or dead".   

Another search led to Pete's Automotive, a going concern on the outskirts of town. Pete was an unassuming man of Mexican descent in his late 50s, who proudly wore his name prominently displayed on his left chest pocket and cap.  He carefully, almost reverently, inspected my car, nodding his head in appreciation at what great shape she was in. Looking at the antifreeze fluid dripping slowly from the undercarriage, he immediately diagnosed a bad frost plug as the culprit. These plugs are built to fail by popping out if freezing occurs, thereby avoiding significant damage to the motor. After inspection, Pete, like Frank had done, identified a list of problems Babe was having. Her brakes were seeping a little brake fluid. The oil sending unit was leaking oil. The alternator was missing the bolt that attached it to the block. The headlights were out of kilter. The list went on. "The car is in great shape," he stated, "but at her age, there are lots of things that can go wrong. They just wear out."

Getting older, even though staying in good shape, means things can go wrong or just plain wear out. If we were cars we would get traded in or relegated to the wrecker's yard. Parkinson's disease is just one thing that seems to hasten certain types of breakdowns. But we are all facing the reality of getting older. In a way, we are built to fail. The question we all answer, intentionally or otherwise, is, "How will we respond?"

I get frustrated with Babe sometimes. At 45 years old, almost 15 years younger than me, she does not perform like she used to. She lacks the modern technology and conveniences that new cars take for granted.  Given her life expectancy, I probably spend more on her than she is actually worth. But despite the clunk her transmission makes when cold, and the wind whistling through the age-stiffened rubber window seals, there is something encouraging about a ride in Babe. She still turns heads. She has a graceful sort of pride. She seems to smile at me and gently say, "I am weathering the challenges of aging. What about you?"

Tennis Anyone?

I had not played a game of tennis for well over 30 years. But there I stood on court number eight, trying desperately to remember the rules of the game, where to stand at different times in the game, and the sequence of scoring, not to mention etiquette. It seemed like a recipe for certain embarrassment. Certainly, it was prime time for my tremors to shift into high gear. It could've been due to a multitude of causes. The tennis racket in my hand felt unfamiliar, more like one of those hand-held bug zappers than a carefully tuned, graphite "weapon". In addition, despite the sun and cloudless sky, it was chilly to be outside in shorts and a T-shirt. And, of course, there was my Parkinson's disease. These three formed a killer combination.

Beginners in most endeavors are recognized as such and given lots of leeway. But those who return to the game of tennis, even after a significant absence, have nothing to blame, except the typical human frailties of age, injuries or ailments. I had my "trump" excuse ready at hand. Entering the "arena" to meet the remainder of my foursome I had fully intended to blame my anticipated lack of skill, style and tennis knowledge on PD. However, after noting that each of the other three players was at least 10 to 15 years older than I was, I gave up that pretense.

Along with the lack of recent experience at the game, I had also forgotten the importance of having the right clothing. Each of the other players wore perfectly appropriate apparel. Fortunately, it was a cool morning, at least by Palm Desert standards, so I had an excuse for my mismatched wardrobe. If the tennis security patrol had been diligent they would've noticed my laughable attire; an old pair of blue shorts with the word, "NAVY", emblazoned in bright yellow on one leg, a white, long sleeve T-shirt with a totally useless pocket on the left chest, and a wine colored Tiger Woods golf cap to top it all off. Despite white Nike socks, complete with "swoosh", and an ancient, weathered pair of white tennis shoes, I would not have been accused of wearing "tennis whites"!

But my lack of sartorial correctness was nothing compared to the obvious contrast in tennis rackets. Mine was a very recently purchased Walmart "Wilson" special that had come with three tennis balls, two wrist bands and an elasticized headband (supposedly to reduce the risk of sweat dripping into my eyes thereby spoiling a baseline smash). The total I had paid for my "complete tennis needs" lacked a zero when compared with the rackets held by other players for which they paid at least $200 more. It could've been worse. It was a good thing that I had not been able to find my wooden racket that I purchased in 1972.

Now tennis is a strange game with odd rules and peculiar vocabulary. Perhaps this is derived from its upper crust beginnings in 19th century England. The most confusing aspect of the game is scoring. I never understood why scoring the first point equaled 15, the second, 30, the third, 40, and the winning point, "game". Tennis also has the peculiar distinction of being the only circumstance in which "love" means nothing.

Needless to say, my return foray onto a tennis court was not a return to my 20s. Dashing about like one of the frantic rabbits that populate the bushy areas near our complex, I accomplished little in terms of successfully returning the ball over the net. But I did get a good workout, as it appeared that I was the only one doing any sweating. Good thing I had my wristband! I managed to lose, and simultaneously embarrassed my partner, in every game until I was partner with "Ace". Ace was the community ringer who played tennis at the level significantly higher than anyone of his neighbors. He had earned his name honestly. Playing on his side of the net we won more than we lost. It only occurred to me later that, despite my ineffective leaps and lunges, I had rarely touched the ball during any of the games. The typical line shouted by my teammates was, "Good effort!"

When we were finally finished, my fellow players were very kind and did not openly laugh about my rather futile efforts at regaining my former tennis prowess, such that I remember it. Oh well, I got a serious 90 min. workout and actually enjoyed the games. Leaving the court with my partners’ promises of return matches and untrue pleasantries such as, "Good game, Bob", I struggled to disguise the grimacing from my tortured muscles as I headed for home. I would need the next five hours to sleep and recuperate in order to stagger back to the courts for my next tennis humiliation at 4 PM. I wondered aloud how this was doing any good for my Parkinson's disease.

Shaking Is Not Normal!

The shaking began slowly, like a shimmy in the steering wheel when the tires are not properly balanced or the front end is out of alignment. My initial response was to laugh a little (not out loud). "My old car has early onset Parkinson's!" But soon the joke ended as the tremor evolved into a serious shudder as we began to literally bump down the freeway.  It was as if one tire was oblong instead of round.  My friend, Gord, and I, looked at each other.  We knew what it was.

It was past 5 PM on Sunday, day two of our road trip to California. Until that moment my ‘67 Camaro had performed like the true classic she was. We had carefully checked radiator level, engine oil, automatic transmission fluid and tire pressure (even the spare, which had a habit of losing air). We had driven her carefully, averaging 55 to 60 miles an hour.  Every car on the road passed us, but that was fine. We just wanted to enjoy the adventure. Well, the journey, like a good adventure, had just become a little less predictable.

We were 17 miles north of Sacramento. We pulled over onto the shoulder to inspect each of the rare, red striped tires. It was the left rear tire. The tread, despite having little wear, had separated. We surmised that it was likely the heat from highway speeds.  A bulge the size of a large egg had developed in the middle of the tread of the tire. It could go no further without potentially sending us into some guardrail. Pulling out the somewhat leaky spare and the somewhat rusty jack, we soon realized the old-style wheel nut wrench was no match for the pneumatic impact wrench that had tightened the lug nuts. They would not budge.  We could not change the seriously damaged tire. We needed a better tool.

Limping our way to the next freeway exit with a gas station, we tried, in simple English, to explain our predicament to a Punjabi-speaking immigrant employee.  But as the sole attendant he was struggling with a more dangerous issue. While the gas station was open, a blazing beacon of hope, it had no gasoline, only diesel. This was not going over well with prospective customers, the bulk of whom were driving monster, 5 mile per gallon farm trucks, which explained why gas was $4.01 per gallon and why California was in serious financial trouble. Fighting off constant mosquito attacks, we approached everyone who was willing to talk to us in an effort to find a better tool to remove the wheel. Finally, after 15 minutes and an equal number of mosquito bite welts, two Hispanic young men wearing crocodile skin cowboy boots agreed to loan us the crossbar tool we needed. It took a while to find the wrench, as the trunk space in the late-model Mustang convertible was almost completely filled with throbbing speakers.

By the time we reached the next sizable town, Woodland, California, no tire stores were open, it being after 6 PM on a Sunday. We knew that we needed new tires or face the potential of roadside desertion. We did not yet know how difficult finding the right tires would be. Deciding it was safer to stay rather than go on to our planned destination, the ubiquitous Motel 6, at $49 a night, presented itself as the most logical overnight accommodation.

The next morning brought sunshine, but our enthusiasm was dampened immediately at the national chain tire shop where we were told, "These are very rare tires. We will have to order them in and it will take two or three days". We chose to venture back onto the I-5.

It was 3 PM on day three when the familiar shaking began again. We were 15 miles out of Bakersfield California, with time running out on finding a solution to our tire problems. But, after numerous stops, we came upon a kind soul who phoned the owner of a local but out of the way tire shop for us. He, in turn, located, complete with a layer of dust and ample evidence of a spider’s comfortable home, two mismatched, old stock, black wall tires that fit Babe’s 14 inch rims. They must have been the last two in the State of California. We were obviously desperate, traveling through, once-in-a-lifetime customers.  Despite Gord's able negotiation efforts, we doubtless paid too much for something the tire shop was only too glad to be rid of.  Still, we were happy to have them.

By 6 PM we were back on the road, headed towards the Mojave Desert with two new (sort of) tires and one leaky spare.  My tremors (the Parkinson’s variety) were worsening as I considered the ominous information gained about the two remaining, red striped, ready to blow, front tires. What were the chances of another two tires developing a bad bout of STD “separating tread disaster”?

Classic

She could not remember the last time raindrops had slipped carelessly down her sleek sides. She had stayed inside so long, only venturing out when I took her for short junkets on a rare sunny Sunday afternoon. Her recent years had been spent silent, hidden under her blue sheet, no doubt feeling abandoned.  But today was different. Today, mixed with the odour of burning leaves, was a tangible smell of excitement; real adventure awaited her. It was like the good old days. The hours spent exploring country roads or speeding down a freeway. They were simple times.  Carefree times. Classic times, really. 
   

"Babe" had always sported a soft, shy blue color since she came out of her Flint, Michigan, factory 45 years ago. She was always pretty and desirable, but had spent a good many years as basic transportation, suffering the normal bumps and bruises that come from undersized parking stalls and following trucks too closely.  But over the last 18 years she has become, like most of those who first drove her, semi-retired.   Even so, after some needed body work, new factory-authentic paint and restored interior, Babe must have felt brand new and ready to go. But to protect the classic she had now become she was, something like my daughter's cat, an 'inside car', to be taken outdoors only under ideal conditions.

Taking a road trip to California in a 1967 Camaro, powered by a 250 cubic inch motor, may seem like a trip down memory lane. The only thing is that my memory had managed to blindly glorify the 'good old days'. There have been some changes over the past 45 years.

Modern vehicles may enjoy luxuries such as multi-zoned temperature controls and expensive audio/visual systems, Babe had a simple fan/temperature/defrost control (no air conditioning) that worked best in cooperation with small, triangular, side-vent windows called, inexplicably, "no drafts", a long since outmoded feature. There was no back up warning system or electronics of any kind. The AM radio and windshield washer had not worked for years. The headlights were dimmed by a small, left-foot operated button, if you could find it in the dark. There was no cruise control, right hand mirror, 3-point seat belts (lap belts only), headrests, intermittent wipers (2-speed though!) or dashboard gauges (except for fuel and speed).   But … Babe did have… an ashtray and working cigarette lighter. You never know when they could come in handy.
Despite being in good shape for a classic, things are not the same.  She has to be driven more slowly, fluids checked more often and she does not idle as smoothly as before. Long trips, such as this one to California, are adventures more than comfortable drives, leaving us more fatigued than we had expected.

Babe, who has been in the family for a very long time, has become like me. Slower, movements are accomplished more carefully. Everything takes a little longer.  There are some undefined rattles and Babe shakes some, especially at faster speeds. She is trying her best to be what she once was, but might be better off just enjoying her new place as a classic; still fully functional and capable of more than being left in the spare garage. 

This little road trip will probably take a toll on both Babe and me. But it was worth it. Truly classic.

Halloween, Politics and Parkinson's Disease

Halloween is approaching so elections must be right around the corner.

When I was growing up the nearest city lights, such as they were, could only be seen from my family’s farm as a distant glow in the western sky.  Back then, Halloween was a major event in the lives of my friends. However, we had discovered that no matter how many O Henry bars, red candied apples, caramel popcorn balls or homemade taffy chews you ate that night, you actually lost weight. That was because trick-or-treating was a dark and sometimes dangerous walk between spreadd out houses just to extract a rather small supply of goodies. Long, muddy driveways, small, homemade snacks, dogs with questionable pedigree bounding and barking out of nowhere and, worst of all, no subdivisions, all led to a meager haul. Treats were literally few and far between. Trick-or-treating bore no resemblance to today's chauffer-driven, hundred-houses-in-an-hour, mad excuse for pillaging one's neighborhood on October 31.

However, for we young lads who, whether it was day or night, knew the countryside like the back of our hands, Halloween became an invitation to engage in widespread terrorist treachery; trick and treat. We were like the mujahedin waging an unholy jihad by plundering the easily frightened pilgrims of limited progress. Surprising as it may seem by today's standards, most groups of costumed youngsters werevulnerable, unaccompanied by any phalanx of protective adults. We knew what we wanted and how to get it. We were marauders in a frenzied but fixated state, armed with bandoliers of firecrackers. We launched "cherry bombs", "Tom Thumbs" as well as full packages of "red devils", "canons", and "ladyfingers", fuses lit, in the direction of our quarry. There were none of those “adults only, stand back, careful of your eyes and then say ooooohhhh and aaaaahhhhh" fireworks of today.

The fact that we teenage tyrants were disguised with blackened faces, and dressed in dark clothing when we laid siege, was, in hindsight, probably of questionable benefit. Everyone in our community knew everyone else. Anyone could identify the walk, the voice, the mannerisms and clothing of each member of our gang without much trouble. Nonetheless, we knew that the hapless targeted children were scared and more than willing to drop their bulging pillowcases and run for the nearest porch light. It only took a few of those Robin Hood raids before we could neither eat nor carry more booty. Thereafter, we limited our strategy to high grading each goodie bag. In this way we considered ourselves merciful, leaving the less desirable spoils well within sight of our victims, having only taken only the most sought after chocolate bars and other treats. Shocking juvenile delinquent behavior? Probably. But it all seemed to be part of a game back then. We neither meant nor caused any actual harm. We may have even saved a few trick-or-treaters from a night of terrible tummy aches!

Many of those seeking public office are selfless, community-serving, honest folks, not armed home invaders. But it seems that some politicians who knock on our doors with their hands out are really simply disguised as benefactors, glibly promising to serve the best interests of our communities. They come polling for popularity rather than standing up for principle. It is literally a modern-day trick-or-treat process at times. Those hapless voters who hand out the treats are more likely to avoid the tricks. But like Halloween, elections seem to come once a year. The days leading up to the event are filled with frantic activity in preparation. And when the voting is over, the masks come off, the candy is eaten, and life returns to normal.

Unfortunately, Parkinson's disease, like many other "causes", plays a role in politics. Profile and promotion, the endless appetite for press coverage and photo ops can often drive the plight of PD into the waiting arms of the press and politicos. It seems to me that we, the people with Parkinson's, must avoid being pawns in the game of partisan politicals. I  know, Governments, often under-informed, seem to be necessary partners in funding the pursuit of answers to the Parkinson's puzzle.  But, to continue the metaphor, we must remember that the hype of each Halloween dissipates quickly amidst the pressing priorities of what follows. Then it is the people with Parkinson's who are left, alone and unable to remove their masks.