The Bad Part of Helen's Backside - Day 2

My relationship with Harley Davidsons has always been a friendly rivalry.  That is, before today. 

Today held experiences in extremes.  We were on the road before 8 am, ready for the day's challenges and adventures.  Little did we know.  It started off as a day of magnificent mountaintop experiences as we rode as far as possible up Mt. Rainier, 3 metres of snow on either side of the road, which kept us on the cool side of comfortable.  Then we careened down a road no snake could duplicate until we reached Packwood, Washington, taking time for a decent cup of coffee and a muffin before we pressed on to our next pinnacle.   You can get near the top of Mt. St. Helen's by two routes, one from the east and one the west, both great for motorcycles.  We had chosen the eastern "backside" as it allowed us to avoid the freeway and travel the curvaceous corners of Highway 131.  It was a treat for all of us, with one exception.

Windy Ridge atop Mt. St. Helens, overlooking Spirit Lake, has special significance for me.  My father-in-law and Renae's brother-in-law had built the stone walls and other masonry there after the volcanic eruption of 1980 had taken its toll.  What's more, I had worked there too.  In fact, we passed the exact spot where I had cut and laid some stones on the back side of the wall of a lookout wall.  Thankfully, visitors could not clearly see my amateurish masonry amongst what is surely artwork.  I had no plan to stop at  that "overlook", but we did.

We were enjoying our way up the 20 mile ascent to Windy Ridge when we caught up with an older style Harley Davidson.   He was slower than us, as were most vehicles as they doddled beyond logic.  But I was in no hurry to pass, recognizing that the summit was a few miles ahead.  As well, I was tuckered out from the number of corners I had conquered so far.  But the blue Harley must have heard the clarion call of the view and at the last second he suddenly decided he would turn left and enter the "overlook " .  He was not in the left turn lane, but I was, having interpreted his slowing down as an invitation to pass.  Accelerating at the same time as he swung the old hog to the left I hit him hard, glancing off his bike with a sickening sound of crumpling metal and plastic.  Wobbling, but still upright, I was able to stop in the wrong side of the road before reaching the edge of the drop off to an unknown conclusion.

That was when the shaking began.  I mean more than normal with my Parkinson's disease.  But, amazingly, except for a dislodged highway peg, my bike was unscathed.  Not so with the Harley, its engine guard bar was bent at almost a right angle, just barely short of preventing his front wheel from turning.  He and I checked out the damage in relative silence.  He seemed to know it was his fault but no allegations where stated.   I stopped shaking twenty minutes later.  I was thankful that neither my body, bike nor our trip were ruined by what proved to be only a scare.  Honda meets Harley and comes away a winner!

The rest of the afternoon was spent descending to the Columbia River gorge and then traveling east in what became a very hot 150 miles to our destination for the day, Kennewick, Washington.  Arriving after doing a respectable 550 kilometres (300 miles) I was minus the visor from my new helmet, which had blown off earlier and ended up under George's front tire.  But tonight, while enjoying an incredible Italian meal, we all agreed that the day had certainly been eventful.  Maybe we had enough adventure for one day.

Yak Steak, 3 Hours Sleep and 200 Miles - Day 1

Tucked under the chin of Mt. Rainier as if it were a violin, Ashford, Washington, is less of a town than a string of unbranded tourist establishments dotted along a five-mile stretch of Highway 605. Unique places, people and experiences occupy this tiny mountain community of 267 souls.

We (my diehard biking companion, George, and Ben and Steve, who work at Insight for Living Canada, and I) wheeled up to the Nisqually Inn in Ashford at 7 pm today. It is the beginning of a two week journey through some of the twistiest motorcycle roads of the Northwestern US.  We had easily entered the US, crossing the border had been amazingly simple despite heightened security concerns. We headed south on I-5, that west coast thoroughfare from Canada to Mexico that hits every major city in-between.  We had little in the way of excitement, instead joining Seattle’s slow-moving weekend exodus. George and I remembered the same thing last year and were glad it was not as hot this year.  The problem I had was a developing headache and a mysterious-looking bright red spot in the middle of my forehead.

The most important gear for a motorcyclist of any type is the helmet. Having somehow badly scratched the visor of my old helmet by trying to clean it last night – the cleaner bottle said it could be used on plastic – I could not find a replacement visor so I had to purchase a new helmet this morning before we left. Apparently, helmets are like new running shoes. You don’t wear them for a marathon without breaking them in first. The blue (same as my bike) size XL felt like a good and snug fit in the store but began shrinking onto my head after 50 miles or so of riding. At 200 miles I felt a permanent dent was developing in my forehead. I am not sure what to do about it, but that is tomorrow’s problem. For now, just taking the helmet off felt wonderful.

We were starved (not to mention very tired, and in my case I had only slept a fitful 3 hours the night before due to working until the early morning hours). “Where is a good place to eat around here?” I asked the elderly desk attendant, immediately sensing his frustration at my question given that he obviously wanted to vanish through the door behind him to continue watching World Cup soccer. “The Wild Berry” he said tersely. Thinking that sounded fresh and homey we took up his suggestion.

After settling in at the restaurant we asked the typical question, but got an atypical response.  “Yak steak” the distinctly Tibetan server stated nonchalantly in answer to our request for the ‘special’, as if this was as common as meatloaf or fried chicken. The specialties of the house were all genuine Himalayan dishes, and tasty, at least based on my choice of the chicken curry over basmati rice, with Tibetan rice pudding for dessert. Who would have guessed that my first experience with food from Tibet would be in the culinary centre of nowhere, Ashford, Washington?

Tomorrow I will introduce the fifth member of our adventuring group. He put our modest first day mileage to shame by having traveled 1200+ kilometres (720 miles) today to meet us. But for now, I need some sleep. Although I foresee dreaming of having head butting contests with Yaks in Tibet all night.

Anticipating a Better Tomorrow?

Most people spend their lives looking forward to things. The weekend, a celebration, a new car, a vacation, a promotion and raise, seeing old friends, or just a rest. These are the thoughts that take up residence in the dreams of optimists. Others, of course, wonder who emptied the top half of the glass as they dread the uncertainty of the future. Fears of being alone, losing a job, failing a course, having a flat tire, or just not knowing what the future holds.

Until I was diagnosed with Parkinson's disease, my tomorrows would almost always look better than today. My dreams were lush jungles of adventure filled with certain success and achievement. Fear never did more than stalk the edges of my tomorrows, and then only long enough to face inevitable conquest and banishment. But since my turning point in January 2006, I seem to need a constant parade of new things in the near future to keep me looking forward with a positive attitude. After all, the prevailing direction for those of us facing a degenerative disease such as PD is a slow, in relative terms, spiral downwards. Think about it long enough and the potential future seems filled with tremors increasing until they rival the great San Francisco quake of 1906, stiffness setting in like slow curing concrete, and loss of balance becoming more akin to drunkenness than disease. And that is just the beginning of symptomatic responses to the diminishing supply of dopamine being produced in one's brain. Our future is not typically marked by celebrations with bright colored balloons, streamers and confetti.

So what are you looking forward to? I have discovered that positive anticipation can be a critical weapon in the arsenal to fight the insurgency of Parkinson's disease. The best part is that this is something we can create with a little discipline and planning.
For me, anticipation is an antidote to anxiety about an uncertain future. Often times when I find myself focused on the fear of future disability, I can fight the darkness that would smother me by simply saying to myself, "Yes, I know. But in just a few days/weeks/months I will be...!"

Nothing could be more relevant recently than the need for positive anticipation to offset the sometimes depressing demands of a far too busy schedule. So right now I am anticipating leaving Friday for a two-week motorcycle trip in the northwest United States. Despite the potential for some pain and discomfort from cramped muscles, few things rival the exhilaration of cruising through corners on two wheels with wind, scenery and smells buffeting my body as I lean into the camber of the road to counteract the centrifugal force at play.

Hopefully, this little bit of anticipation will whet your appetite for future postings as you come along with me as I describe (mostly for my own mental picture album) the experiences and (mis)adventures as the Knights of the Open Road ride again.

A Father's Day With Gifts and Parkinson's Disease

I woke up early this morning. Earlier than I had hoped, but nothing unusual. Each night's sleep is an uncertain journey, interrupted a few or many times depending on the extent of my PD-addled nocturnal preoccupations. Swinging my legs over the edge of the bed I find myself experiencing two wildly disparate feelings, one recurring and one new.

First, I am pleased, as I am every morning, that Parkinson's disease has not yet made it difficult to get out of bed. There is no stiffness that often plagues others who struggle to take their medication and wait for it to take effect before rising. I can only imagine the frustration of waiting, thinking of the necessary and pressing, as well as a desirable, things to be done.

Second, it is Father's Day. A collage of emotion collides with that realization. It has been 16 months now since I could express to my father my profound appreciation for all he did for me. I miss being able to articulate my gratitude to him, although that is not just an annual sense of loss. My memories of him, especially his living with Parkinson's disease, still school me in ways I never would have considered possible when I was younger. Thank you, Dad.

At the same time I am thankful for the opportunity to be a father, and grandfather. Although there is sometimes worry and heartache that go with the role and responsibility, there is also great joy and gratification. I have learned so many invaluable lessons from my children, and through my struggling to be the best father I can. Despite my many failures, I have a deep sense of peace that I have passed on to my children, as best I can, the values that are most important. Now I am much more the prayerful and caring bystander than the director or decision-maker for their lives. Which is as it should be.

Stepping into my den this morning, as my place to be alone with my thoughts, I was greeted by a large gift bag. On top was a card expressing my wife's appreciation for me as a Dad (very sweet, but entirely undeserved, as it is she who is the better parent). Inside the bag were two gifts, both entirely appropriate, thoughtful and cognizant of my ongoing wrestling match with PD. The first included a Starbucks gift card with a collection of travel-size toiletries: toothpaste, Chapstick, shampoo, deodorant and (hint, hint) mouthwash. As I will be leaving soon on a guy’s two-week motorcycle trip, these items express her support for my addiction to adventure despite my health challenges. Although I will need to ask her what I am supposed to use the antibacterial wipes for.

The second present was a state-of-the-art electro-energy converter, Arcitec RQ 1050, flex and pivot action, three-headed machine, also billed as "the world's closest rotary shave". You see, shaving has become a little more treacherous recently. Unless "death by 1000 cuts" is a literal form of execution, I doubt that I would have died from blood loss while shaving. However, shaky, left-handed, face scraping has redefined "safety razor". This new electronic device will sit alongside my electric toothbrush reminding me that as things get more difficult they can also be made easier.

Now, if I can only figure out how to turn this machine on! Oh well, I may have to read the instructions.

"Peanuts" and Parkinson's disease

"Winning isn't everything, but losing is nothing." True? Well, partially.
It is unclear what "Peanuts" cartoonist, Charles M. Schulz, meant by the phrase he coined. But it sounds like something Charlie Brown would say as he stood on the pitcher's mound of that mythical baseball park wondering what he could do so that his team would win just one baseball game. Schroeder, Lucy, Linus and even Snoopy were losers when it came to baseball.

What is winning? When it comes to life with Parkinson's disease, how do we end up being winners? What if we cannot beat PD? Are we losers? Like many other wise statements, the words used in this cartoon-based maxim require definition.

Defining words and concepts for others is far less important than how we define them for ourselves. I have been struggling lately with the concept of "losing". As I age, accelerated most likely by my degenerative disease, I have experienced loss. Most of us, including me, resist looking at that reality. But failing to do so means we cannot learn from "losing", and I suspect that if you are like me you do not learn from winning either. Wisdom comes not so much from winning, but from losing and refusing to stop there. It comes from learning from the losses we experience.

An old English proverb states, “A smooth sea never made a skilled mariner". Those of us who are sailing the turbulent sea of Parkinson's disease have only two choices: use the lessons taught by our loss of dexterity, vitality, balance, mobility, stability and even confidence (not to mention loss of speech, smell and smile) to learn how we can pass on what we have learned; or give up, knowing that barring a miracle we cannot "win" the fight against PD.

Today, I learned from my grandson. It happened like this. Due to my right arm being weak and painful when lifting anything of any size or weight, I could not easily lift him, being the stout 18-month old toddler that he is. So rather than sweeping him into my arms for my customary bear hug as he puts his head on my shoulder, I was forced to get down to his level. This had me on my knees, looking him right in the eye. I saw him differently. We played at his level for the rest of the evening. We both sat in his little picnic table on the back deck. I draped over the edge of the bathtub has he played with his toy boat with the little men who sat in their circle, triangle or square slots on its deck. But, after a long day at the office, I was spent. But even in that loss of ability to give anymore watched him drift off to sleep while I held him having his bedtime bottle. My "loss" had become a very satisfying "win".

I have recast the "Peanuts" cartoonist’s statement: "Winning is not everything, but losing is nothing (unless you do something with it)".

Parkinson's Disease Means Constant Calibration.

My right arm has been worse these days. Whenever I straighten my arm, pain shoots up from my seemingly knotted forearm muscles, through my elbow to my shoulder, striking home just inside my shoulder blade with the same affect as a lightning bolt. This occurs whenever I try to lift even light objects. A towel from the rack to dry off after my morning shower. A binder from the bookshelf over the credenza. Lifting up PJ my grandson as he raises his arms for a hug. As a result of these limited daily feats of strength my arm muscles jam and screech to a halt. It is like when in Typing 9 I would "accidentally" press a handful of typewriter keys at once, requiring that I reach in and pry the letters from their jumbled collision with each other so that I could continue with the speed exercise.

As a result I find myself pleading with my booked up physiotherapist to fit me in more often. I promise him that I will increase my contribution to his retirement savings plan, or his next vacation to Italy. He tells me that this muscle-twitching mayhem is my body's way of reacting to the endless Morris Code-like mixed up messages from the brain to my muscles. The tremor, he says, is the muscles’ confusion in trying frantically to discern what the brain is shouting: “Stop! No, go! Stop! Go!” No wonder the dopamine cells lead a rebellion and, like lemmings, heedlessly run over some cognitive cliff, falling to their deaths. My physio kneads my aching arm like noncompliant clay. Then he applies ultrasound. And finally, he resorts to shock therapy (low voltage, but my right ring finger still involuntarily curls into my hand as if to hide there until the voltage goes away).

How do I measure the speed of Parkinson’s progression? How fast am I getting worse? When will I lose the ability to function nearly normally? Are the storm troopers laying siege to my tired body that so often seems at risk of being toppled? What is normal? How do I calibrate this body to keep track of the degeneration happening?
Wikipedia, the seeming authority on all things sublime or substantial, says, "Calibration is a comparison between measurements - one of known magnitude or correctness made or set with one device and another measurement made in as similar a way as possible with a second device. The device with the known or assigned correctness [our once-upon-a-time normal body and brain] is called the standard. The second device is the unit under test [our PD bodies], test instrument, or any of several other names for the device being calibrated."

When it comes to PD and the people with Parkinson’s (PWP), we are forced to acknowledge the idea of the new normal. We must recalibrate our thinking to find out our new normal and live accordingly. Some PWP find their once strong voice softening and slurring, while others find it hard to move, or sometimes stop moving. Sometimes there is depression and other times distonia. What is the standard against which to calibrate the “unit under test”? What is normal? Or is it as one of my friends says, “Normal is just a setting on a dryer.”
Right now it is the constant ache of my right arm that I need to recalibrate and forget the standard set by my pre-PD self. I need to redefine “normal” for my arm and its ability, at least for now. And keep doing so lest I become defined by the progression of this unrelenting disease. But, given that we are all aging, perhaps each person needs to recalibrate their own definitions for what is “normal”.

Parkinson's Disease and Freedom

It is Friday. It is late. I am exhausted from the week of work and other worries. 6 hours sleep last night. Up at 5 AM. No nap today. But I refuse to go to bed. I will not let the fatigue treat me like some whipped puppy being shooed off to my corner to sleep. It is my own little act of rebellion. I sit in front of my computer and read cases recently decided and posted on the British Columbia Supreme Court website. Or I read e-mails, check blogs, or review my daily Google Alerts on recent world developments or news stories related to Parkinson's disease. And, of course, often I write positivelyparkinsons postings. It has become my silent protest against the logical thing to do; get some sleep!

I begin to wonder whether this is some Freudian refusal to "die". However, I have concluded that "staying up late" is defiantly seeking control, pursuing freedom. A friend recently said, with resignation, that he was having trouble coming to grips with the idea that at 50 he can no longer "do it all".  As we age it can feel like our choices become more limited. We do not have the resilience, the reservoir of energy, the enthusiasm or sometimes the audacity to "just do it".

My Parkinson's disease constantly reminds me that I am losing control of my body. And age itself slices like a scalpel into the sharpness of my memory, sometimes leaving me without the right word, someone's name or a clear recollection of an important event. The younger, tech-savvy generation rises like a tidal wave, threatening to overwhelm my ability to remain on the cutting edge of developments in my profession. At 57, am I losing control of my life? "Freedom 55" must be a cruel joke, a myth perpetrated by investment dealers and "wealth managers"?

Ironically, this reminds me of my 18-month-old grandson and his love of stairs and keys. Until recently fear kept PJ from even attempting to crawl up the curved staircase in the entryway of our home. But, inevitably, like all helpless babies who are growing into their 2 year old independence, he has began to assert his need for freedom to make his own choices. He giggles excitedly as he stretches his short legs up to the next riser, clinging to the spindles with one hand while he turns, beaming, to watch me follow a few steps below. He will spend several more decades in this process of asserting himself, and inserting himself into the world around him, making choices, taking control, and experiencing freedom.

Anyone experiencing the progression of PD will feel a commensurately deepening sense of loss. But, like any loss, be it the inability to hold a teacup still enough to raise to your lips, having your driver’s license revoked or being unable to move due to "freezing", the loss need not define us.

I may lose my self-importance/pride, some of my self-image/vanity, and even elements of my self-worth/misplaced identity to the extent it is tied to my perceived ability to control the world around me. But I cannot and will not allow any disease, misfortune, event or even person to take away my determination to be the person God made me, with an irrepressible ability and need to make choices. For as Voltaire, the French philosopher, said, "Man is free at the moment he wishes to be.” We are only as free as we choose.

As for me, as irresponsible as it may sound, I choose to prop my weary eyelids open, shake my already shaking fist in the face of this disease, and stay up ridiculously late on Friday night.