‘Car Trouble’ or Who was in the Boot with Parkinson’s?

It is a rare occasion indeed when Ottawa, Ontario (at the confluence of the Rideau, Ottawa and Gatineau Rivers) is mentioned in the same breath as Lake Kawawaymog near South River/Algonquin Park in Ontario, and the Assiniboine River near Treherne, Manitoba. The straight line distance between Lake Kawawaymog and Treherne is approximately 1,502 kilometers (934 miles.) The straight line distance between Ottawa and Treherne is approximately 1783 km (1108 miles.)  Interestingly, a straight line from Ottawa to Treherne runs almost directly through Lake Kawawaymog.

 Photo: AFMarshall

Lake Kawawaymog                                                             Photo: Anne F Marshall

Other than having this interesting geographical juxtaposition, their waters never intermingle directly, but a strange thing happened last week. A time – space continuum was breached, as my thoughts traveled to our immediate destination (Lake Kawawaymog) and kept on traveling straight to Trehere not only across 1783 km but also back through 57 years of temporal space. No, I was not hallucinating because I have Parkinson’s disease and although Parkinson’s was along for the ride, it just wasn’t driving as usual. And yes, the levels of all bottles in my stash of scotch remained constant so there is no blame to be directed there.

A = Ottawa B = Lake Kawawaymog C = Treherne

A = Ottawa
B = Lake Kawawaymog
C = Treherne

Please bear with me. I can explain but you will have to be prepared for a somewhat circuitous route.

Anne and I were embarking on a relatively short journey (51/2 hours or so) from our home in Ottawa to Anne’s sister (Wendy’s) and brother-in-law (Ger’s) cottage on Lake Kawawaymog. My own sister (Ger) and brother-in-law (Terry) were accompanying us as we were to drop them off en route at Terry’s sister’s place. Regular readers probably realize that I do not often reveal names beyond my immediate family on the grounds that some of them are, in fact, innocent. But in this case, in order to avoid confusion, I need to note that both my sister and my wife’s sister’s husband respond to the name “Ger”, one being Geraldine, and the other Gerald or Gerry. Fortunately for us they seldom are in the same room together, but they are included in many sometimes confusing conversations.

On Highway 17, some twenty minutes west of the City of Ottawa boundary, our trusty hybrid vehicle (make, model and year withheld to avoid any possible litigation) decided to pack it in. In the old days when a vehicle died it just stopped running, or made some horrible grinding, mechanical noise. In this case, when I kicked the accelerator to pass a slower vehicle in front of us and to avoid a faster vehicle which was intent on riding up our rear end, the hybrid cried out electronically with a cacophony of bells and whistles, and a plea for us to “pull over and stop safely” appeared in bold text across the dash in front of me. Further attempts to rouse the engine and transmission to their respective tasks went unheeded. We slowed and coasted to a stop on the gravel apron.

We sat in disbelief for a moment and then I did what every human is programmed to do – reboot. I again started the car, put it in gear and pushed carefully on the accelerator. Toying with us, the hybrid got back up to speed, but then quickly relapsed into ‘I ain’t going nowhere mode.’ The four of us sat somewhat stunned as the realization that our routine trip was going to be anything but routine.

While we gathered our wits, I did have some fear that this situation would trigger an attack of Parkinson’s tremors and accompanying pain in my left foot and leg. I do suffer from persistent pain but it had been largely under control on this trip barely registering a 2 or 3 on my 10 point scale. And stress, even of the most innocuous sort, usually precipitates such responses. I need not have worried. It didn’t develop. But more on that later.

‘Car trouble’. Those words rolled around in my brain with a familiarity which surprised me. When I was a very young boy, ‘car trouble’ followed us around like the black cloud over Joe Btfsplk’s head in L’il Abner. In the late 1940s and early 1950s my parent’s traveled the highways and byways of Manitoba in at least two different Austin Healey cars. And funny little cars they were. Turn signals were not yet in common use on many vehicles and hand signals were an obligatory part of the highway driving code. Winter was always chilling as wind and snow blew in the driver’s side window onto whichever poor child had the misfortune to have the rear left seat.   Then came a breakthrough which sealed the Austin’s comical fate in my mind forever – electric turn signals emanating from between the posts of the front and rear doors on each side. Controlled manually from inside the net effect was that of little illuminated rabbit ears popping up and jutting out with each turn, and popping down when the turn was complete. I do recall that my father hated it when I would reach out of the back window and try to keep the ears from popping out. Fortunately, he could not swat me as I was in the seat right behind him and he never swore so I escaped immediate wrath. And he mostly forgot such things by the time we reached our destination.

I recall my mother being in perpetual fear of breakdown especially on rainy days and on muddy roads, or during bone chilling minus 30C winter days. These are fears she carries with her to this very day.  In winter, we children traveled under the warmth and weight of several itchy khaki blankets courtesy of my grandfather and my dad, and the military. To be fair to Austin Healey, ‘car trouble’ included getting stuck in snow or mud, dead batteries in the middle of winter as well as a variety of mechanical concerns ranging from inoperative windshield wipers, to frozen heating systems with no defrost, to holes in the gas tank from the pounding of gravel from the roads. A good road had gravel; a bad road had mud; both were dangerous. There were precious few paved roads.

But, back on the apron of Highway 17 we were waiting for the tow truck to arrive to carry the hybrid away in an inglorious fashion, when the memory of a leaking gas tank on the old Austin flashed through my mind. I am not sure why, but maybe it was because it was also at the beginning of small exciting trip for me. I was a young lad of about eight. My dad and I were off on a day trip to go fishing in the Assiniboine River near Treherne, Manitoba.  We rarely fished in the Assiniboine in those days, preferring to fish in the smaller Pembina River which ran closer to home. [This was before the days of torrential summer rains which flood large sections of Manitoba. How about that? I think I have lived long enough to document climate change in my oral histories!]  Anyway, the fish in both rivers were mostly Northern Pike which we called “jackfish.” In summer, the river was warm and the fish sluggish and mushy. As you can imagine, sluggish, mushy fish taste like sluggish, mushy fish. The thrill was in the catching not the eating.

Nevertheless, Dad and I were returning to the great meandering Assiniboine because a month or so earlier we had been fishing off a shoal on the shallow side of the river, casting our lures into the deeper waters eroding the far bank, when my lure was struck with a heavy hit from something large. It almost ripped the rod from my hands and the rapid retreat of whatever was on the other end caused the handles on the reel to rap painfully on my knuckles. As an eight-year old, I had no concept of how to skillfully play a fish for landing. The fish (I assume it was a fish and not some Assiniboine version of Ogopogo – Lake Manitoba’s answer to the Loch Ness Monster,) came back towards me just as rapidly and I cranked in the line. The fish then turned to make a second desperate escape bid neatly snapping the taut line, making off with my favourite red and white spinner and dashing my hopes of landing a really big one. If I were telling this to you in person, I would punctuate the story at this point with my arms stretched out widely.

So, we were returning to the Assiniboine, somewhere west of the bridge on PTH (Provincial Trunk Highway) 242 and east of the bridge on Highway 34 in search of the “big one that got away.” I am not certain which bridge was called the “new bridge” and who knows, they maybe call it the “new bridge” to this day, some 57 years later, such is the unique passage of time on the prairies. Only we never made it – car trouble.

Somewhere north of Notre Dame de Lourdes, we let it slip away. [Funny, these words evoke some notion of a Canadian version of "Me and Bobby McGee."] Anyway, dad noticed that the gas gauge was going south faster than the old Austin was going north. A quick stop for dad to peer beneath the car, dust still billowing behind us and over our heads. The verdict: a small puncture in the gas tank. A new problem; never had this before. What to do? Perhaps it was too far to return to our home in Altamont? Besides, we both held out hope that it could be repaired and we could continue on our expedition. I also think my dad didn’t want to disappoint me. Dads are often like that.

It was a Sunday. I know this because my dad only ever had full days off on Sundays. So we continued on towards a nearby farm. We pulled into the yard and into an open shop (a wood frame building as it was in the days before there were many steel Quonset huts.) I don’t recall much other than the farmer was nice (they usually are) and wore the obligatory coveralls of the day. The floor of the shop was a combo of concrete and dirt – hard to know where one started and the other ended – both covered with oily, greasy substances accompanied by that distinctive petrol smell. My dad and the farmer quickly discussed the particulars of the situation and jacked the car up with a hand jack. Yep, closer examination confirmed the original diagnosis – a small puncture in the gas tank. I recall my father not being happy about the quality of the steel of the tank and the fact that there did not appear to be any protective shield for the gas tank.

What to do? There was a discussion about possibly welding the hole. Thank God this option was discarded quickly! A search for something to plug the hole ensued: rolled up paper – nope; rolled up cardboard – nope; small twigs – nope; some form of glue found in the shop – nope; gum chewed to a sticky mess by an eight-year old boy – nope. Combinations of the above – nope. Other materials were undoubtedly employed as potential solutions but none succeeded in stemming the slow leak.

A decision was made to top up the tank and turn for home, disappointed that the day would end without a fish, or even a fish story.  My father, being the methodical man he was, scratched out a rough equation in an attempt to determine the optimal speed to drive to be most efficient such that the amount of gas used by the motor minus the rate of leakage did not decline past zero i.e., we would not run out gas before we reached our home destination. All without speeding the poor Austin into the ditch or attracting the attention of the RCMP who patrolled those roads. I fear this mathematical learning opportunity was largely lost on me. We reached home safely and the “big one” got away once again. It was an anti-climax that the tank was repaired by sending it to Winnipeg. From that day forward, it always had an additional protective shield deflecting any gravel that would spit up from the roadbed.

Meanwhile, back on Highway 17 modern technology was working exactly as intended. Using our two cell phones we called roadside assistance covered courtesy of Ger’s CAA card. [Note to self: get one.] A tow truck and taxi were dispatched to our location. After a short cell phone conversation with the service department, the hybrid was towed to the dealership for repairs. We searched the internet on our cell phones for the closest car rental agency, determined car availability and had the taxi deliver us and our luggage to that exact location. A replacement car was secured. Phone calls and texts to those at our respective destinations were made, took time for lunch, and we were back on the road with only a two hour delay.

No one panicked – not even Parky.  My Parkinson’s remained remarkably in check – no exacerbated tremor or pain for that time period or for the remainder of the day. Amazing! Modern technology, money of course, and the presence of mind of my brilliant sister to have a roadside assistance card, took most of the guess work out of this crisis.

Maybe … but my past experience is that if Parky has an opportunity to screw things up, it will. So I am still left with the burning question: why didn’t my Parkinson’s act up and make life unbearable for me, if not for others? It could just be the reduced stress as noted above, or it could just be luck as Parkinson’s often is unpredictable with a mind of it’s own. I actually think that on this trip Parkinson’s was in the “boot” along with the luggage. As a kid I always laughed when the old timers referred to the trunk as the “boot” and the hood as the “bonnet.” The Austin had a boot, and a bonnet.  Our current car trouble was under the bonnet and Parky was discretely packed away in the boot.

Upon further reflection though, I am coming to realize it is also likely that I am developing (with a lot of help and encouragement) skills in implementing certain techniques and practices to diminish the impact of Parkinson’s – to keep it in the boot so to speak. For example,

(1) I have been reviewing for quite some time The Pain Toolkits produced by Peter Moore whom I follow on Twitter @paintoolkit2 and his website http://www.paintoolkit.org/  The toolkits and Peter’s encouragement on Twitter have been instrumental in my attempts to be in control.

(2) I switched my physiotherapy approach to LSVT BIG and PWR (Parkinson’s Wellness Recovery) at Action Potential Rehabilitation http://actionpotentialrehab.net/ where my physiotherapist is Sue Goodridge. Even though I have only had a few weeks under this program I already feel that I am gaining a better understanding of both the mechanics and the theory of physiotherapy as applied to Parkinson’s. Such things as movement, flexibility, coordination and balance are among the keys to a better quality of life. Even simple exercises such as “splaying my toes” remind my feet and brain that my toes are intended to move that way. For too long my brain was sending signals to my feet and toes that they should remain immobile in some futile attempt to avoid or lessen pain. In fact the opposite – more movement – is required. Movement and exercise are critical for persons with Parkinson’s.

(3) My physio, Sue, aside from having all the skills and qualifications of a physiotherapist, is quite expert in chronic and persistent pain. She has pointed me in a direction of “mindfulness meditation” as a way to approach stress-related persistent pain and to deal with muscle movement disorder. I am discovering that pain management is greatly enhanced when we have an ability to focus, or re-focus, the brain away from the problem. This is somewhat of a surprise to me as I have never been an adherent of meditation per se although I have long practiced what I jokingly refer to as “mind over matter trickery” to overcome both pain and tremor when I want to go to sleep. Of course, it may just be that I am exhausted …

Don’t get me wrong, I am in no way an expert in any of the above areas. I have only just begun this particular journey.  We shall see where it takes me and I shall be blogging from time to time about these experiences and adventures.  So far, I feel that there is real improvement and that my optimism is warranted.

That being said, none of these programs, techniques or practices is as important to me as the love, encouragement, understanding and support of Anne, our four daughters and their respective husbands/partners. They are the fuel for the engine that keeps my old chassis moving – even if the bonnet and boot are too large.

All of this rambling has been my usual long winded way of saying that I escaped what should have been a very stressful day as Parkinson’s was relegated to the ‘boot’ in the ‘car trouble’ affair. It was a pleasant drive with Ger and Terry to their destination, and good food, drink and stimulating conversation with Wendy and Ger made for a relaxing time when we reached our cottage destination.

But, I have to tell you a secret. Parkinson’s was not alone in the boot. My dad and his mother Maud (my grandmother) were also in the boot. I am pretty sure they had never been held captive in the boot when they were alive, and I am also pretty sure that this was not an imposition for their souls and/or spirits at this time. Nevertheless, our vehicle was carrying two of the three children born to Kathleen and Bert, our mother and father. Perhaps, our father provided prudence to my sister Ger to purchase the roadside assistance card; our grandmother Maud was in the boot to keep Parkinson’s under her stern and intimidating watch (you met her in earlier posts); and my dad also would not have wanted our mother who hated car trouble to worry – she is still living and so could not be in the boot but she was likely huffing at Bethany where she lives in Middle Lake, Saskatchewan.

How do I know they were with us? We were close to Terry’s sister’s where we were to drop Terry and Ger before we continued on to the cottage. Turning a corner, a field of naturalized lupines appeared on the left side. Struck by such beauty I braked abruptly (no one behind thank goodness,) and jumped out of the car to snap a few shots with my iphone – chalk another one up for technology.  At that point I knew that we were accompanied by someone who loved the passengers in this vehicle, who understood intrinsically the beauty of such a sight, and knew that I love lupines!

Photo: S. Marshall

Lupines!                                                                                                   Photo: S. Marshall

As always, my experiences leave me with a bit of a mystery or intrigue that raises questions, sometimes philosophical. In this case, both my grandmother and my dad were colourblind! Not a life threatening condition to be sure but how could they fully know what they were seeing?

What you see when you are colourblind.  Source: Coblis Colorblindness  Simulator  Photo: S. Marshall

What you might see if you were colourblind.  Source: Coblis Colorblindness Simulator                                                               Photo: S. Marshall

Surely if they hadn’t experienced the full visual effect, they could not know that the striking natural beauty of the lupines would literally stop us in our tracks, sending a signal to us that all was well. But think about it. They were horticulturists by nature and experience, and their love and appreciation of Nature allowed them to transcend this disorder of being colourblind. I try everyday to use my dopamine assisted brain to transcend a neurological disorder called Parkinson’s to alleviate pain and tremor.  And you know, it often works.

I can only conclude that on this particular day, Parkinson’s did not stand a chance.

 

Parkinson’s: Was it me, the pesticides or Diefenbaker?

You know, I didn’t plan much of my life. What I mean is that most of my life seems to have just happened to me.  I was there obviously, but it was as if I was swept along with the current and occasionally I would thrust an oar into the water to change direction – maybe out to sea, maybe into choppy waters, or maybe into a safe harbor.  In retrospect, maybe I wasn’t paying a whole lot of attention to what was happening. The question is: should I have been paying more attention and taken a more active role in setting the trajectory for my body and soul?

Would my life be different (better?) if I had formulated a grand plan or blueprint for living my life with measureable goals of achievement?  I have talked to many people who have such an orientation. Their life’s path and goals can be either detailed or general but they are never in doubt that when the final tally of their life’s work (existence) is counted, that it will be called a “success.”  Most argue that humans can control or shape their own destinies through their talents, skills, and abilities, and hard work, good judgment, and good decision-making can always be credited for success.  And conversely, if you are not a success, then you must not have the necessary skills or, more likely, you have screwed up somewhere along the way, by exercising bad judgment, bad decision-making or not working hard enough.

Curbside Tansy: Good planning, bad planning, no planning?  Photo: S. Marshall

Curbside Tansy: Good planning, bad planning, no planning? Photo: S. Marshall

I am not convinced that I can look back over my life with such certainty and proclaim that the trajectory I have followed has been purposeful to the point that I can claim to be its author either way. I certainly don’t feel as if I had a vision and worked successfully to realize that vision.  Undoubtedly, some would say that is a terribly sad thing to admit as the word “failure” carries such a heavy burden. Rest assured, I do not feel as if my life, in any respect, has been a failure.  It is just that I did not set the course alone and was not always aware of the destination.  But, as authors usually say, “I am indebted to all who made this work possible but any errors and omissions are my responsibilities alone….”  Very few say, “I took a laissez faire approach to this work and this is the way it turned out….”

I also do not think that I am a fatalist: someone who thinks that “fate” pre-determines life’s chances, direction and outcome.  This doesn’t really fit all that well with a previous post about the long shadow of the gardener where I outline the gardener’s role in intervening in the course of Nature and the role that humans play in successfully altering certain aspects of diseases and conditions affecting and afflicting the human condition.  While we do not have a cure for Parkinson’s, we most certainly do mitigate its symptoms through the use of pharmaceuticals and we alter its intensity through Deep Brain Stimulation and delay its progression through exercise. So, I am not a fatalist but neither am I in the camp where humans can absolutely control their own destiny.  Could it be that I am unknowingly floating along with one oar occasionally dipping into the water so that I am going in circles only sporadically rather than all the time?  Hmmm … that is an intriguing thought at least.

I can pretty much tell you with certainty that no one plans to have Parkinson’s Disease.  But I have it.  Does this mean that I have screwed up somewhere along the away?  Did I miss a cue where I could have jabbed my oar into the water more forcefully to change course?  Does it mean that I am a failure – perhaps weak of mind, weak of body, or that I used poor or bad judgment along the way? Is having Parkinson’s Disease an individual failing or weakness?  Is it similar to smoking and its relationship to lung cancer where we can point to the smoker and say self-righteously that they should not have smoked; they should have known better; and now they are paying the price.

Perhaps, I should have washed my fruits and vegetables more diligently over the course of my lifetime to ensure that I was not ingesting harmful chemicals used in agriculture. Perhaps, it goes back to my parents and grandparents as they grew many of those fruits and vegetables on the farm and in small town gardens using pesticides predominant in the 1950s and 1960s (and maybe unwittingly exposing themselves and their families to unnecessarily high levels.) These decades have been coined the “Golden Age of Pesticides” led by that miracle chemical DDT which gained credibility for its effectiveness in WWII.  A whole host of products were developed – pesticides, herbicides, insecticides, bactericides, miticides, rodenticides, nematicides, and fungicides – attacking pests, insects, fungus, weeds and other organisms which threatened the production of the world’s food resources. We know now that this was unhealthy but do we know that any of these chemicals cause (or caused) Parkinson’s?

Some nasty products inherited from previous owner.  Photo: S. Marshall

Some nasty products inherited from the previous owner of our house.   Photo: S. Marshall

While the relationship between pesticides and Parkinson’s is under greater and greater scrutiny, at the moment there is no scientific proof that the relationship is anything more than a correlation.  Interestingly, I did grow up in Manitoba where persons with Parkinson’s are overrepresented compared to the Canadian population.  One might surmise that Manitoba would be the ideal crucible for Parkinson’s with exposures to pesticides in the production of grains and market garden produce.  But I did not grow up on the Red River Valley flood plain, which had the highest concentration of pesticide use.  I grew up on the Manitoba escarpment formed by the shores of receding glacial Lake Agassiz.  A University of Manitoba research paper indicates that the incidence of Parkinson’s is higher along the escarpment than elsewhere in the province.  But, as usual, there are some complicating factors inasmuch as the area also has high levels of cadmium and arsenic compounds which places well water at risk of contamination through erosion and runoff.  I remember my father talking about possible arsenic contamination in our wells when I was a child in the 1950s.  Everyone in our rural location was on well water.

The present always links to the past of course, but the equation is never linear.  I guess there is no shortage of areas for me to research, contemplate and on which to opine.  I grow more like my father every day.

It is neither for personal gain nor ideological correctness that I encourage research on the relationship between Parkinson’s and pesticides.  I am sure that many would like to pin Parkinson’s on corporate greed, malicious actions of misinformation or withholding of information, and malfeasance in the application of these products.  There is litigation underway currently in at least one instance involving flight attendants on the matter of the use of pesticides on aircraft and the incidence of Parkinson’s among flight attendants.  Believe me, I am very supportive of these legal claims, but I am resigned to the fact that the most likely outcome of litigation is a settlement to those affected if the case meets what I call the “Erin Brockovich threshold” where the evidence is weighty enough to tip the corporations into a settlement.  It is true that settlements flowing from litigation provide a monetary marker that some level of justice has been reached, and a confirmation that pain and suffering has monetary value.  Indeed, some corporate behaviours will have been changed for the better in the process.  But the primary question of cause and effect remains unanswered.

The current thinking is that some genetic formations are responsive to an environmental trigger for Parkinson’s and pesticides may provide that environmental trigger in some, but not all, instances.  Still, while we are pretty certain that not all cases of PD are the consequence of exposure to pesticides, these findings provide encouragement that we may be closer to finding the cause and a cure.  I can only hope that is the case.

As much as I would like to shift the blame for my having Parkinson’s to pesticides or some other external factor, let’s return for a moment to the assumption that I have some control over my own destiny.  A slightly revised formulation of my question would be:  is Parkinson’s a consequence of having lived a “bad” life?

I am sure that you will excuse me if I approach this question in my usual unorthodox manner by asking:  Did the Right Honourable John G. Diefenbaker have anything to do with my having Parkinson’s?  John Diefenbaker was Prime Minister of Canada from June 21, 1957, to April 22, 1963.  I was 8 years old when Diefenbaker was elected Prime Minister and I remember vividly being enthralled with this character.  I would listen to his voice quavering through the radio (we didn’t have a television yet) and I could imagine his lips (which had the odd quality of being thin skinned but plump at the same time, with the lower lip often in the pouting position) on the verge of launching a spray of spittle as he castigated then opposition leader Lester B. Pearson of the Liberals on some matter of policy or perhaps, personal, difference.   Diefenbaker was always fodder for political cartoonists but it was particularly so in his later years when his jowls would hang down below his chin, shaking in indignation at his critics both within and outside the Conservative Party.

[I am not going to expound on Diefenbaker’s record as a politician, as it is not germane to any argument that I am going to make here, other than to make a personal observation that his achievements make him look like a freakin’ socialist compared to our current Conservative Prime Minister.  Sorry, I couldn’t resist.]

At any rate a corollary question has to be asked.  Did Diefenbaker himself have Parkinson’s Disease?  Remember, this was a time when there was little research and little medical thinking on the nature or prevalence of PD.  One biographer, Phillip Buckner, says that Diefenbaker had a “nervous habit of shaking his jowls which led to rumours that he was suffering from Parkinson’s disease….” Of course an accusation of PD was designed to discredit Diefenbaker and cast doubt on his ability to lead a government.  On June 7, 2001 (22 years after Diefenbaker’s death,) the University of Saskatchewan took an unusual step to issue a press release, announcing research concluding that Diefenbaker did not suffer from Parkinson’s but had “essential tremor,” thus protecting, posthumously, his intellectual integrity and mental capacity to lead a Canadian national government.

OK, so what is all this about Diefenbaker?  The majority of you (a) weren’t even born when Diefenbaker was prime minister; (b) aren’t interested in historical political figures; (c) are apolitical; (d) live in another country; and e) think I have gone off my rocker.  These facts would indicate that I have gone in this direction pretty much to satisfy myself.  Could it be that I am now just beginning to understand that my recipe for blogging is one part self-indulgence on behalf of the writer, one part indulgence from the reader, and one part curiosity from both the writer and the reader as to whether any worthwhile windows on the writer’s soul will be opened if we continue?  I am not sure if you like this recipe, but as with any recipe, you should try it at least once – preferably not half-baked.

In spite of my early fascination with Diefenbaker, I was never a convert to his political vision and for years I openly made light of – no, I openly made fun of the possibility that Diefenbaker had Parkinson’s.  I would impersonate his voice and try to form a shake of my jowls (hidden beneath my beard!) in the most exaggerated manner possible with my lips quivering wetly and indignantly, “Ppppparkinson’s? Rrrriiiidicuulousss!”  It might have fit the atmosphere and political flavor of the moment and I recall that others and I laughed uproariously (more or less, depending on the amount of libation already consumed) at this totally inappropriate and spurious ad hominem attack.

So, I am left sometimes wondering:  am I now paying the price for some pretty stupid things I said about John G. Diefenbaker?  This is not the only stupid thing I have ever done in my life (my children will be surprised that I admit this,) but maybe it is the one thing that has floated to the top of some pond of scum that constitutes the totality of my failings, and the life I now live is matched to the chemical characteristics of that signature scum.

Sometimes the path and destination are not entirely clear. Photo: S. Marshall

Sometimes the path and destination are not entirely clear. Photo: S. Marshall

I haven’t made a study of how people rationalize life’s existence and condition, nor do I plan to do so.  Nevertheless, I would very surprised if any of us who have Parkinson’s doesn’t ask the question: why me?  [I am sure this is common for those who have other debilitating or life threatening conditions.]  And we begin to assess our life in ways that would offer an explanation.  There are, of course, many answers and many paths to follow in the quest for an answer.  Genetics? Pesticides? Other environmental factors?  God’s will?  The answer that makes sense to us as individuals provides the sustenance for our survival.  We need to understand and rationalize our existence, the condition of our existence, and the conditions placed upon our existence.  Not easy stuff to think about and not easy stuff to live.  Hopefully, each of us will find a path and an answer that allows for loving and caring relationships in our families and in our communities. I am exceedingly fortunate to have found such unequivocal love with Anne and all of our children.  But we must also, in our external relationships, free ourselves of bitterness and animosity to those who find different paths with different answers – whether existential or spiritual.

As I review these thoughts,  I am reminded that in a previous post, we flew perilously close to a philosophical sun without melting our wings; today I have taken us perilously close to religious concepts where we might conceivably burn up totally.  I have steered purposefully away from using words, concepts or constructs such as Heaven and Hell, sin and salvation.  Those ideas are undoubtedly on the path for many and are already part of the answer for many.  Are they part of mine?  They haven’t been to date. This is as far as I am prepared to go on this subject at the moment as it is quite foreign terrain for me.  Undoubtedly, I will wander there in future posts.

The only thing I am willing to concede is that I don’t for a minute think that John G. Diefenbaker would assign Parkinson’s Disease in an act of retribution from the Beyond.  But then, have I been speaking “literally” or “figuratively?”  Is Diefenbaker the personification of God?  I bet that he’s never been called that!  Although Dalton Camp may have called him the Devil!  (I hope this statement sends at least some of you scrambling for your Canadian political history books….)

So, why me?  It is not Diefenbaker’s doing.  I don’t believe it is because I led a “bad” life. Is it not fruitless to add up the totalities of one’s failures and successes to pass judgment on your life’s worth?  Anyway, isn’t that someone else’s job?  The jury is still out on the role of pesticides. And who knows whether I could have taken decisive action during my lifetime to change the course of my personal history with Parkinson’s?

Maybe the best answers are really questions: a) who knows (shrug)?  b) if gardens were planned like lives, would we have invented pesticides? and c) if lives were planned like gardens, would we have invented pesticides?

Bad Judgment: Letting The PD Gardener have the camera when his meds have worn off. Phota: S. Marshall

Bad Judgment: Letting The PD Gardener have the camera when his meds have worn off.       Photo: S. Marshall

In the Parkinson’s Garden: Ali, Michael J., and me

I am not sure what led me to consider writing a piece on humour and Parkinson’s Disease (PD.) On the surface, there does not seem to be much funny about Parkinson’s. I am not a particularly funny guy and I do not see myself as a humourist. My children may think I am funny (bless them) or more likely, that I have a weird sense of humour and that I am funny/strange (hey, in a good way.) Other than a few impromptu occasions when I played “Stanta” at the office Holiday lunch where I improvised a few in-house comments, I have avoided putting my mind to comedic endeavours. I do not write jokes, nor do I tell jokes particularly well. In fact, I barely remember any of the jokes I have heard over the past 60+ years and there have been tens of thousands of them.

Yet, here I am, sitting at the keyboard intent on writing about humour and Parkinson’s. Others have tackled this and done a far better job of it than I am likely to do (see Yuma Bev at http://www.parkinsonshumor.blogspot.com.) Perhaps, I am being deluded by dementia often associated with PD or maybe I have a propensity to achieve failure. Am I rising to the level of my own incompetence? [Oops, I almost typed “incontinence” instead of “incompetence.” That may well seep into my blog at some point, but not quite yet.]

Undoubtedly, a sense of humour is both learned and inherited. My father had a wry sense of humour and there are others in the extended family (living and dead) that I consider to have somewhat quirky outlooks on life. I confess though that the humour of the latter never developed much after their demise, but interestingly, the richness of their life stories did. Funny that.

Before I go too far, I think it is important to distinguish between humour and comedy. At the risk of appearing a bit “researchy,” and you know that I try to avoid rigourous research in this blog as much as possible, (some of my professors have told me I tried to do that in my academic work as well,) it is sometimes necessary to interject some sociological order into all universes. Dick Gregory, renowned American comedian and civil rights activist, described humour as everyday situations that happened in everyday life and relayed to others in informal settings. By contrast, comedy was paid work where individuals were divided into audience and performer – and the performer better have his/her comedic timing down pat.  With that in mind, I think that I am contemplating humour as opposed to comedy in this piece. But I do have PD and may appear to be confused, even if I am not.  Please read on to find out for certain.

I do not remember my paternal grandmother (Maud) well but my most explicit memories of her are from my childhood and teen years. (For the record, she was every bit the horticulturist that my grandfather was and I shall explore her talents more in later posts.) She always seemed to be a stern, straight-laced person, not particularly the cuddly type. Maybe being the mother of five sons had something to do with that. Nevertheless, I knew her to have quite a soft side. She was not above pulling one’s leg with some exaggeration or story of life. But she had one serious downfall – when she was engaged in some tomfoolery, she had an undeniable twinkle in her eyes. You only had to look at her straight on to learn whether what she was saying or doing was fact or fiction.

Maud "Granny" Marshall

Maud “Granny” Marshall   Photo: unknown

I inherited that same trait and it has proved to be my downfall on many occasions as I tried to pull off some spoof or other, or even, dare I say it, lie about something. My maternal grandfather (“Grampa Bill”) also possessed a well-developed sense of humour with no ability to conceal it so I am doubly cursed with this weakness. Those who know this fact quickly find me out in any ploy.  Genetically speaking, both sides of the family ganged up on me – for humour at least, and who knows about the PD?

Personifying Dick Gregory’s juxtaposition of humour with comedy, Grampa Bill also established himself as a performer – not so much paid as rewarded – in various social settings such as Legion Halls and gatherings of army buddies. He maintained a constant patter of jokes coupled with a long playlist of old standards and comedic ditties played on an old squeezebox. I did not inherit this latter talent but can only surmise that some residual features of it still percolate through my personality from time to time.

My children have grown accustomed to my (often) sad attempts at humour although it does create some genuinely funny and absurd conversations where we riff off one another with bad puns and malapropisms.  It is particularly fun in this electronic age of text messaging. They speak openly in front of me, as if I am not present, of their personal concerns about having my sense of humour. I am afraid that they have good reason but at least they have some early warning.  My greatest wish is that they inherit my sense of humour such as it is … and not any genetic propensity for Parkinson’s.

Humour can be learned to an extent but it can’t be forced. If you have ever witnessed someone who is unfunny trying to be funny, you know that it must come from deep inside the genetic code. I can hear my ancestors as I start into a conversation that has some potential to be funny. Hmmm … psychosis and hallucinations (both visual and auditory) are routinely part of the lives of approximately 25% of PwP, usually later in the progress of the disease.  There are several potential triggers for hallucinations but these are best left to another time. This is an aspect of PD that has not visited me yet. I am not sure it ever will but I can’t say that I am looking forward to it if it does.  Still, I don’t think that retrieving sub-conscious memories of past relatives constitute hallucinations but … I shall have to be careful about what I say here ….

What I am about to write now would shock my grandmother and I doubt that there would be a twinkle in her eye – more likely she would have some sharp words uttered through pursed thin lips. Nevertheless, I shall charge ahead in some perceived need to edify myself about the fact that comedy and humour may take different forms even if the situation is essentially the same.

Consider the following scenario: you find yourself (assuming you are male) between Muhammad Ali and Michael J. Fox at the urinals at a baseball game. (If you are female, make any assumptions you wish.) By the way, I have taken the fundamental premise of this scenario from a real joke circulating on the Internet.

A comedian or comedy writer is likely the one who thought up this scenario and in its telling will add some quick repartee about having to be careful with all that shaking going on (Parkinson’s you know, wink, wink.) Regardless of how much beer or other liquid has been consumed by any of the parties involved, the interaction (and the joke) is over quickly.

Others will also have contemplated this scenario but will have presaged it with considerable verbiage around never having met Muhammad Ali and being disappointed that the only celebrity in sight at the game played in Los Angeles has been Michael J. Fox who was almost overlooked, as he was so short. The writer opines that he paid a bundle for the tickets because he wanted to see some celebrities. Late in the game he makes a trip to the bathroom and, lo and behold, he sees Muhammad Ali and is so overcome with excitement that he extends his hand to shake Ali’s while he is at the urinal. Of course this is a dodgy proposition at the best of times. The comic then clumsily mutters something about being glad he did not end up between Ali and Fox.  [shakey, Parkinson’s, yada yada.]  The joke ends up in essentially the same place.

However, let’s assume that you are a PwP and further assume that you have a sense of humour.  PD humour is largely self-deprecating and based on our personal, lived experience.  It transpires that you actually do end up, by pure happenstance, at the urinals in a real life situation between Michael J. Fox and Muhammad Ali. Wow! The humour is in the account of the meeting. After all, whom do you pretend not to glance at first? Add your own Parkinson’s shakiness into the equation and suddenly Ali and Fox have something to fear as well. Further, the fact that Muhammad Ali is 6 ft. 3 in. and Michael J. Fox is 5 ft. 4 in. provides all kinds of potential for quips about being drenched from head to toe, etc.  But what separates this PwP account of the meeting at the urinals from others is that it is experiential and the humour flows from that fact. There may well have been an exchange between Ali and Fox as they know one another; and you, yourself, may have participated in the exchange. The humour is in the telling of a true story, but with just enough embellishment to make the listener check to see if there is a twinkle in your eye … or not.

But there is nothing funny about Parkinson’s Disease, is there?  It is a disease to be feared and among the last words you ever want to hear from a neurologist are, “you have Parkinson’s.”  However, my neurologist did say to me recently, “you have six months left.”  It turned out that he was referring to how long my current prescription for L-dopa would last. I never really thought I only had six months left to live, but it was funny to hear it, as he said it. Why is that?

But what are you going to do, when life deals you a lousy hand? Oh you know, there are all the usual motivational sayings and/or lyrics from uplifting songs: “When life gives you lemons, make lemonade.” “Just pick yourself up, dust yourself off and start all over again.” “Dig down deep and fight back.” They don’t really work for me.

I am not trying to downplay the importance of motivational and inspirational sayings, or soul-strengthening passages from the texts of various religions. They are important to each of us in how we face PD and its intractable march to destroy our brains and bodies. For me, humour has its own inspiration and is more than a coping mechanism; it is one of the essential ingredients for quality of life and survival.

I have great admiration for the Michael J Fox show and everyone involved with it. It is difficult to write Parkinson’s humor – too obvious and it appears that you are mocking those who have PD – too subtle and only those who know the details of Parkinson’s will get it. There is a need to strike a balance between the two.  As a PwP, I truly appreciate the subtle humour that makes me feel I am an “insider,” privy to information that only very few others have. But then again, I want some things to be really obvious, front and centre; to raise the profile of PD, providing education and awareness to the ravages of this very unfunny disease; to drive home the points that more research and funding is required to find a cure; to impress that economic, social and health policy need to be aligned to provide quality of life so that dignity is not the final victim of PD.

Do I think that the Michael J. Fox Show is the best comedy show on TV? No, but I do laugh out loud more than three times each week which is better than the bar I set for many other shows.

So, what if I met Michael J. Fox and Muhammad Ali in my garden? Ha!  That is a scenario even more unlikely than my meeting them at the urinals. But if I did meet them in my garden, we would hear Anne shrieking: “ Watch where you guys are treading! There are tender young seedlings under there you know!” I have heard this admonition many, many times as I lurch around the garden like Young Frankenstein when my meds are wearing off.  Intellectually, I know what is happening and I look down in a sort of “out of body” experience to see my feet heading wherever they feel like, while my mind is stepping as delicately as possible. I have come to enjoy “lurching”, at which I am getting ever better.  If you haven’t tried it, maybe you should. It is good exercise with those long strides that force you to concentrate to avoid pitching head over teakettle into the shrubbery.

The challenge of the garden wall   photo: S. Marshall

The challenge of the garden wall    Photo: S. Marshall

I often find myself focusing on the 8-inch garden wall in front of me as if I were about to attack the balance beam at an international gymnastics competition. If I can reach it without damaging some baby brown-eyed Susan’s, I will have exited the garden with minimal damage. Wait, don’t they grow like weeds anyway? Why am I so concerned about them? I tell myself to hell with the brown-eyed Susan’s – just get one foot on the wall and then step down to the path without gaining any extra momentum. If I lose the battle of agility to the one of speed, I will end up crossing the path, crashing through the Monarda (Marshall’s Delight no less) and pitching into the Rosa Rugosa. What follows will be the ignominy of a cross-examination as to why I smell vaguely of spicy herbal tea, have scratches all over my hands and arms, and rose petals in my hair.  

It is at this point that I call on “Brother John” (Anne’s brother) as a role model for balance success.  I am much indebted to Brother John for a classic image of him raising his arms in triumph as he executed a perfect landing, after launching himself from his sitting position on the couch to a standing position directly in front of the couch. With that portrait of success etched into my dopamine deprived brain, I initiate a long graceful stride to the wall and then a split second later, another one to the path with my arms high in the air in the victory position – the audience roaring its approval and the announcer shouting, “Wow!  He really stuck that landing.” I don’t believe it until I check myself for rose thorns and/or blood trickling down my bare arms.  

I do sometimes fantasize that Ali, Michael J. and I are in the garden. I am pretty sure this is a fantasy and not a hallucination.  The collateral damage would be considerable but it would be the best and probably funniest day of my life! Ali would be bobbing and weaving, playing rope-a-dope against the fence with his head just visible among the Joe Pye weed, Jerusalem Artichoke, and Rudbeckia quoting poetry: “… float like a butterfly and sting like a bee,” appropriate for any self respecting perennial garden. Michael J. would be channeling Alex Keaton, vainly waving his arms about in the shorter brown-eyed Susan’s and Echinacea to convince us that this waste of space could be put to better use as a condo development. Or perhaps MJF would provide a private re-enactment of Marty McFly and the famous guitar performance of “Johnny B Good” in Back to the Future, only this time from the “Gardens.”  In any case, seedlings and full-grown plants stand directly in harm’s path.

 

Is Ali bobbing and weaving with Joe Pye, Jerusalem Artichoke and Rudbeckia?  Photo: S. Marshall

Is Ali bobbing and weaving with Joe Pye among the Jerusalem Artichoke and Rudbeckia? Photo: S. Marshall

But back to reality. My response to Anne’s shrieks to step carefully is invariably the same, “if you want a gardener with PD to clean up this mess of weeds, you have to expect some collateral damage! I am not called The PD Gardener for nothing, you know.”  That, along with a well-timed diversionary question about the new peony in a bed I haven’t yet tramped across, usually buys me enough time to escape the scene of the carnage.

There is much more to be said about humour, gardens and Parkinson’s, and all the permutations and combinations cannot be addressed in one post. I was going to say “short post” but you would snicker at that characterization. I shall return in future ramblings to chat about the Parkinson’s world, from the inside out.

In the meantime, I have learned that gardens, for the most part, recover from unintentional Parkinson’s invasions. And the benefit to a PwP for having the opportunity “to trod” in such gardens is immeasurable. Any sacrifices the flora has made are returned more than a hundred fold to the maintenance of a healthy PwP outlook on life. I have also learned that finding humour in what we are and what we do is critical to understanding that, while not everything in life is what we would wish, when one is in the garden, alone or with loved ones and friends, life is damn near perfect.   

Maneuvering in this garden is a challenge!  Photo: S. Marshall

This garden would be perfect if I hadn’t stepped on the seedlings!   Photo: S. Marshall

Parkinson’s and the Gardener’s Shadow

Every year about this time, I begin to look out at the frozen tundra of our garden and wimper, “everything’s dead ….”

 

"Everything's dead ..." Photo: S. Marshall

“Everything’s dead … ” Photo: S. Marshall

But the magic always returns in the spring with snowdrops and crocus shoots emerging even before the snow and ice have fully receded. I marvel at the resilience of the flora that survives in the Ottawa Valley.  In the gardening parlance of plant hardiness zones, we are mostly in zone 3 but plants hardy to zone 4 and 5 often survive in specific microclimates. 

I don’t know why I am surprised, because I grew up in the even harsher climate of the Manitoba prairie where zone 2 would be the order of the day with some zone 3 locations.  And my family in The Pas, Manitoba and Humboldt, Saskatchewan (in sub-arctic zones) would snort at any suggestion that the Ottawa climate is “harsh” compared to what they live through.  Nevertheless, they do try to rationalize their choice to continue living in such a climate by citing the old saw that theirs is a “dry” cold, and therefore they are not really that cold.  However, anyway you slice it, the mean annual temperature of The Pas – 0.3 C (31.5 F) compared to Ottawa 6 C (42.8 F) tells the story.  Ottawa is cold and The Pas is damn cold – ‘nuff said.

It is small wonder that humans have spent considerable effort to overcome their environment by developing a variety of shelter options and energy uses to provide protection from the cold, and heat in other parts of the world. Of course, there is considerable evidence that we have not been effective stewards of planet earth in our efforts to protect the very environment we are protecting ourselves from, so to speak. I will not address that issue today but, rest assured, it will return to these pages in the future. It is too important to ignore.

There are many who would avow that nature should always be allowed to take her own course without human intervention.  Of course, this idea, unfettered and taken at its extreme, cannot be achieved. It would mean that humans could never intervene in the course of nature in order to better the human condition, or indeed to survive. Humans have always sought to “tame” nature, to “overcome” nature, to “improve upon” nature, to “protect” them from nature’s wrath as well as to “benefit” from nature’s bounty. 

There are countless theses and dissertations written in disciplines as varied as engineering, philosophy, environmental science, sociology, psychology, architecture, and literature to name but a few, exploring the relationship that humans have with nature. I don’t plan to engage in an academic exercise of outlining all of the issues and conducting some sort of meta-analysis by formulating hypotheses and reaching conclusions – believe me, I am as thankful for this as you are. My observations are, as usual, anecdotal and unscientific but hopefully thought provoking.  

It is important to understand that the gardener always will tinker in the garden and always will intervene to alter the course of nature, sometimes for the better and sometimes for the worse. And sometimes just to show that we can. It was reported recently that a man in Chidham, West Sussex in the UK has successfully grafted 250 varieties of apples onto one tree over the course of some 24 years. Don’t believe me? Google it.  

Upon reading that account, I was reminded of my watching, as a young child, my paternal grandfather (Bob) grafting what seemed to me to be twigs onto various types of trees in his orchard.  He meticulously demonstrated how to prune the spear being grafted at a precise angle to be inserted into an incision in a branch of the receiving tree. It would be bound with twine or a piece of bark and covered with a type of rooting hormone and gum to cover the tender incision.  I am told he was successful in grafting more tender varieties of apples onto hardier rootstock and even produced some apricots in a climate not favourable to such tender fruits in southern Manitoba.

That is a fine memory indeed but do you know what I really remember?  I remember my grandfather’s hands as he manipulated his old pocketknife (sharpened on a foot powered treadle grinder in the farm shop) in a gentle but firm procedure. I remember his thick thumbs and fingers, seemingly incapable of such dexterity, being more than adequate to slip the young scion into the incision for the graft. Those fingers had often used that same pocketknife to cut a slice of apple, proffered to me with pride, from one of the many varieties grown in the orchard on his farm. And amazingly, even though Parkinson’s has diminished my sense of smell considerably, the crisp scent of that apple still tingles in my olfactory lobe. Tart and clean.

Not even sure what kind of apples these are.  Must get my pocket knife. Photo: S.Marshall

Not even sure what kind of apples these are. Must get my pocket knife. Photo: S.Marshall

But more than that, I remember those same thumbs and fingers on my father’s hands as he tended his flowers and vegetables in Manitoba and Saskatchewan. A short growing season, but loam rich soil and many hours of sunshine made for a fast transition from spring planting to fall harvest. Dad also had a pocketknife which he used to cut into various fruits and seeds in his efforts to provide an education on gardening (if not horticulture) to a mostly unreceptive teenager – me. I watched his hands grow old in the garden, in his workshop, and in his efforts to keep his mind sharp by filling out every crossword and Sudoku puzzle he could find, in pen. 

Today, I look down to see those same thumbs and fingers on my own hands as I deadhead spent flowers, root out troublesome weeds, and dig with an old spade to move, remove, or replace various perennials. But there is no pocketknife in my hands. The era of security checks at airports have diminished their numbers, although I am pretty sure that I have one or two tucked away in my ‘odds and sods’ drawers (yes, more than one drawer.) However, unlike my father’s or grandfather’s, my hands often shake and my fingers fumble to meet the task at hand. Parkinson’s is never far away if it is not immediately present.

But I am not disturbed by my inadequacies. Rather, I am heartened that I had the great fortune to witness those hands fly across three generations with a destiny to toil in a vocation (for my grandfather) and an avocation (for my father and me) to assist nature in creating beauty, joy and satisfaction.

Humans have long put their own stamp on ‘gardens,’ witness the many and varied formal and informal garden types neatly categorized within a nationalist typology: English, French, Japanese, Dutch, Korean, Spanish, Persian, Chinese, Italian, etc. All are created with plants and hardscape endemic to their namesake nations, if not to their immediate environs. But most have unmistakable human influences that, while artificial, are evidence of efforts to “improve” upon nature. I was reminded of this during a short walk we took recently in the Gatineau Hills north of Ottawa.

William Lyon Mackenzie King was Prime Minister of Canada for a remarkable 22 years in total during the years 1921 – 1948 and developed a country retreat at Kingsmere north of Ottawa in Quebec. He bequeathed that estate to the people of Canada and, among other things, the public is welcome to view his attempts at creating “ruins” on the property. He salvaged portions of buildings and landmarks being demolished in Ottawa and relocated them to Kingsmere. It is widely known that Mackenzie King was quirky to say the least, and some may think that these “ruins” are folly but most visitors would likely agree that they are creative enhancements to nature’s already established beauty.

Does this ruin the View? Photo: S. Marshall

Does this ruin the view? Photo: S. Marshall

Still, anyone who gardens knows that nature is not always beneficent and we sometimes intervene deliberately with the intention of altering the trajectory of a phenomenon that is harmful. On a very small scale, I am trying to root out some very invasive vinca minor (periwinkle) that is threatening to take over and choke an entire bed of hostas and other innocent victims. Periwinkle, in its place, is a very fine, hardy ground cover that can thrive in considerable shade and has a lovely, small flower (periwinkle of course.) Unchecked, it wants to take over the world.

Vinca minor (periwinkle) would like to take over the world. Photo: S. Marshall

Vinca minor (periwinkle) would like to take over the world. Photo: S. Marshall

Whether I like it or not, I have Parkinson’s Disease, a natural phenomenon with no known cure. It is neurologically invasive.  Many organizations are working diligently and relentlessly to fund and conduct scientific research to achieve a cure. Success would mean a monumental change in the course of history for millions of Persons with Parkinson’s (PwP) and their families, and for those who are at risk for Parkinson’s. I do not expect to benefit personally from this work. The time frame is too short; the disease is too advanced. No matter, it is critical to continue to pursue a cure. Scientists, Parkinson’s support groups, fundraising organizations, fundraisers, caregivers, family members of PwP, individuals and philanthropists are all in agreement that a cure is our primary goal. But there are at least three corollary ‘meantimes.’

In the first ‘meantime’, we continue to use the gold standard of levodopa along with an array of other pharmaceuticals to keep the disease in check and to help us remain upright in a never-ending struggle to defy the inevitable.  Chemical assistance works to a certain degree but there are long-term and short-term side effects, and drugs do wear off. 

In the second ‘meantime’ we pursue strategies to alter the functioning of the brain.  For example, Deep Brain Stimulation (DBS) is an invasive brain surgery that has brought relief to many PwP.  I am privileged to have met someone recently who had DBS although at the time of this writing he has yet to have the stimulus unit fine-tuned to its final settings. Nevertheless, it is a pleasure to witness the improvement in his tremor even without the full effect. It was also a pleasure to witness the genuine excitement and relief that he and his spouse exhibited throughout a lengthy process of being accepted, having the surgery, and in the immediate post-surgery period. I am confident that the next time we meet they will be wildly satisfied with the outcome.

There is also hope that a newer, less invasive ultrasound brain procedure will be as effective as DBS by focusing ultrasound waves on a specific part of the brain killing the cells causing the tremor. This procedure requires neither invasive surgery nor a general anesthetic and holds great promise to alleviate some symptoms and provide a much improved quality of life for PwP and their families. 

I am under no illusion that DBS or ultrasound is a “cure.” They are not. Some of the more problematic characteristics of Parkinson’s are decreased but not totally eliminated.  Most patients receiving the treatment still require drugs such as levodopa but usually in much reduced quantities. DBS or ultrasound is not for everyone. In my own case, I do have considerable tremour when the medication wears off but my major concern is cramping and pain in my legs and feet. I am not sure that these can be changed through these procedures.

Other research seeking to unlock the genetic code of PD is underway and may well lead to the discovery of ‘markers’ allowing for earlier identification and treatment. All scientific research must continue.

It would be an understatement to say that PwP, families and caregivers are praying that a cure can be found. Those of us in our mid-sixties or older know the likelihood of a cure within our lifetimes is exceedingly slim. Perhaps those with early onset Parkinson’s will see the development of a cure. Realistically, that would be my greatest wish and the best possible outcome.

In the third ‘meantime’, we must focus on other measures such as exercise to delay the progression of Parkinson’s and to alleviate some of its immediate effects.  The October 2013 World Parkinson’s Congress in Montreal brought together research scientists, physicians, PwP and their families, caregivers, therapists, health and social work professions, health policy analysts, fundraising organizations, advocates, and many others from around the world to inform, discuss, analyze and make recommendations.  I did not attend but followed the congress on various websites and Twitter postings.

At the time I did not know many PwP personally but still the excitement about the Congress was palpable, driven by a sense that all players in the Parkinson’s equation would meet on common ground to share critical information to make a quantum leap towards enhanced quality of life for PwP and their families, and a cure.

The concept of exercise – moving our bodies in some deliberate physical manner for at least 30 minutes each day – was pervasive at the Congress. It is beneficial to those facing a wide variety of physical and mental illnesses. Parkinson’s is one of those.  I am not fooling myself into thinking that exercise can cure any disease but it appears that its greatest benefit is to delay the progression of some of the most problematic symptoms e.g., rigidity, stiffness, slowing of gait, feelings of weakness, imbalance, etc.  As long as these can be delayed, changed, or improved, exercise is a good prescription. There is even a very good campaign in the UK to have physicians prescribe exercise as per guidance issued to the National Health Service by the UK National Institute of Health and Care Excellence. (See Exercise Works! http://www.exercise-works.org/.)

Exercise for PwP can take a wide variety of forms with walking, Nordic pole walking, cycling, running, x-country skiing, downhill skiing, snowshoeing, aerobic exercises, rowing, Pilates, yoga, dance, Tai Chi, and boxing being among the most popular.  The National Ballet School in Canada and the Mark Morris Dance Group for PD in New York have specific ballet and dance classes for PwP.  Each type of exercise has its adherents and specific selling points – cardiovascular, flexibility, balance, strength, concentration, etc.  Nevertheless, they are all in agreement, exercise is critical to physical and mental health in PD and to delaying the disease.  (Nevertheless, Anne and I do have a good chortle when we imagine me doing arabesques or pirouettes. Don’t underestimate the importance of laughter in the medicine cabinet.)

Rather than ballet, I have been developing a regimen of cardiovascular training using a NordicTrack machine, some light weight training with free weights, along with aggressive gardening (attacking weeds and invasive plants with vigour.)  Coupled with good nutrition and eating habits, I lost over 35 pounds since January 2013 and I feel better. Or at least I did until recently when I seem to have developed some issues with sciatica and/or right hip. My neurologist is clear it is not PD related so I continue to explore the problem with other doctors. This new development, while somewhat painful, has me very much frustrated that I am not able to continue my regular exercise routine. I take this frustration to be further anecdotal proof of the thesis that exercise is beneficial as it has a negative consequence when withdrawn. I am currently awaiting results from x-rays and will be seeking further medical attention in the coming weeks.  Stay tuned.  

You know, I have always thought that I was ‘progressive’ but I didn’t really want to have progressive aging along with a progressive neurodegenerative disease – both incurable by the way.  In any case, it is sometimes difficult to discern which symptoms are related to PD and which are just related to getting older. PD itself is a series of ups and downs, good days and bad days. Growing old just adds to the fun! Ain’t life just peachy that way?

I once told a student that he should always write something to signal that his paper has a conclusion, or is coming to a conclusion. His next paper succinctly intoned: “Here comes the end.” So, take heart, the end (of this post only!) is near.

Today, we have drifted perilously close to some heated philosophical debates about humans and nature without having ventured so near as to melt our wings. We will need those wings for other flights into the worlds of Parkinson’s and gardens, as they do meet regularly but mysteriously.

Just as every gardener casts a long shadow and a watchful eye over the garden in the belief that we can improve on nature, every person touched by Parkinson’s tries to cast a shadow over this hated disease to alter its natural course.

I leave you with these questions: Can humans partner with Nature on an equal basis to create beauty? Can humans win the struggle with Nature to eradicate the ugly?

The gardener's shadow is omnipresent. Photo: S. Marshall

The gardener’s shadow is omnipresent. Photo: S. Marshall

 

Going Home with Parkinson’s: Always a few surprises

 

When I was a teenager, we had a silly saying that went as follows: So I said to myself, “Self, don’t go away. But I turned around and there I was, gone.” I make no claim as to its origin but it seems to demark some sense of searching for identity, or more appropriately, a sense that our identities were rapidly changing and no sooner had we latched onto the latest version than it was gone.  Gardens are a bit that way actually, ever changing over the seasons.

Please garden: don't go away Photo: S. Marshall

Please garden: don’t go away.   Photo: S. Marshall

My last post was largely about searching for an identity in a new Parkinson’s body and the saying would have been apt to describe that process. However, this post is largely about dealing with Parkinson’s on a day-to-day basis while revisiting an identity that I have been shedding for about ten months.  

I am a retired staff from the Canadian Union of Public Employees (CUPE). I will not bore you with all of my tasks and responsibilities, as I don’t believe they are germane to this post. Suffice it to say that I was employed in several senior positions for almost 24 years. It is impossible for the work, and more importantly, the people, to have not influenced almost every aspect of my persona.

This influence was brought into sharp relief recently when my wife, Anne, and I attended the 50th anniversary convention of CUPE in Quebec City.  CUPE has a wonderful practice of inviting those who retired after last convention to attend the next convention. This gracious gesture acknowledges the contributions of the recent retiree, permits the retiree to meet and greet colleagues both old and new, and allows the retiree to witness the formulation of new policy and practice as the union moves forward. Don’t worry; I will not bore you with policy decisions and debates, although I am sure they would be interesting to some, and infuriating to others.

Over 2500 delegates and staff. How many will have to deal with PD in future? Photo: S. Marshall

Over 2500 delegates and staff.  How many will have to deal with PD in their lifetimes?  Photo: S. Marshall

I didn’t know what to expect as we made our way to Quebec City. On the one hand, I was excited with eager anticipation to see members and staff who were so integral to the mission of the union.  I had worked closely with thousands of them. On the other hand, as the kilometers clicked away on the train, I had a sense of trepidation.  I would be meeting many people, for the first time, as a Person with Parkinsons (PwP). How would they react – hell, how would I react? I was not concerned about my own mental state as I indicated in my last post, I have largely come to grips with Parkinson’s and my identity. I was more concerned about how my Parkinson’s body would react? Would I be able to control my temours so that I didn’t look like my legs were going to fall out from underneath me?  Would the pain debilitate me at inappropriate times such that I would regret being in the presence of others? I did not want to appear frail and weak. Would I have the stamina required to do all of the things I wanted to do? I just didn’t know what would happen.

I was right to be concerned about the tremours, the pain and the fatigue. They did cause some problems throughout the five-day meeting. Because I am now in touch with the rhythms of my body in ways I had never been before, I tried to prepare ahead of time.  Foolishly, I did not consider the obvious: convention carries on all day and into the evenings with forums, rallies, and other events, as well as dinners out with friends. And Quebec City has such great restaurants with remarkable cuisine.  In short, convention is a 12 – 13 hour endeavor each and every day for those who want to absorb everything.  Non-PwP are thrilled by this prospect and often work and/or party late into the night, extending the hours even further. Ah, I remember my own staff days “fondly” where it was not unusual to work 18 hours each day during convention.

But this time, I made a personal commitment to engage in at least 30 minutes of cardiovascular exercise each day, and I found myself in unfamiliar territory as a PwP. The hotel had a gym and the first two days I hit the treadmill early so as to be at convention on time. However, I failed to consider that it takes about 1½ hours after waking for my L-dopa to kick in. This meant that those early gym dates were particularly tiring.  This was compounded by a departure from my strict adherence to nutrition that maximizes PwP performance of daily activities (a long way of saying that those restaurants are really fantastic with multi-course meals, wine and desserts.) I guess I shouldn’t have been surprised that fatigue caught up to me quickly and I couldn’t sustain the pace. To make a long story short, I opted to forgo evening sessions and late dinners for the last three days and I no longer went to the gym but I did walk on one other day. (Please note: I returned to a strict regimen of exercise and proper diet upon returning home.)

When fatigue catches up to me I walk slowly and with great effort. I am usually in pain and I have strange muscle and nerve sensations in my legs and feet, and have noticeable tremour in my left leg. Even in casual situations such as a dinner with friends, my left leg shakes and I have muscle cramping and pain. I used to think it was some form of stress that caused this but now I am convinced it is “stimulus” that is the trigger. Whenever my mental senses are heightened, the symptoms are exacerbated. It is important to note that this does not apply during physical exercise which seems to override the mental stimulus. Sorry, I seem to have lapsed into some musing on a subject about which I am not qualified to analyze.

It was at that point that the word “disabled” became real to me for the very first time. It has crossed my mind a few times since diagnosis, but not seriously as retirement tends to cast a different hue on the matter. At convention it hit me fully that it would be impossible for me to carry out the responsibilities of my previous position without considerable accommodation.  In Canada, PD is considered a disability. I have never really considered myself to be disabled but that reality is now upon me. It is not a word (or a condition) for me to hide behind nor should I. I want to pursue life in all its forms and will continue to do so. But I am also cognizant that as a PwP, I can no longer participate in society in a manner equal to my former self.  There is a longer discussion to be had on this point but it will have wait for another time. Those of you who have laboured through this text to this point are undoubtedly relieved.

So, what surprised me?

CUPE traditionally opens and closes convention with Solidarity Forever and Bread and Roses, performed in both English and French. Of course, this was not new to me having attended countless other conferences and conventions. But to my surprise, I was quite noticeably (to me anyway) emotional during the singing of Du Pain et des Roses – a feminist and labour anthem, and slogan that has its roots in the Lawrence, Massachusetts textile strike of 1912 and reprised in a revised form in the 1995 March of Women against Poverty.

Once you hear the uncomplicated clarity of the lyrics of Du Pain et des Roses, it’s refrain and demands are etched in your mind forever. Have a listen here to the group Break Syndical who performed it at convention.

http://www.youtube.com/watch?v=jsY0ODVIjCA

Over the course of the week many staff and members made their way to our seats in the convention hall to say hello and pass on their good wishes. And each walk through the convention centre and hotel was a walk through a gauntlet of handshakes and hugs. I really loved seeing everyone and exchanging a few words, if even only for a few moments. However, I was not prepared for my reaction after you left. I would lean over to Anne to say a few words about you and I would be unable to enunciate these words as the emotions welled up inside.

I am not certain exactly what was happening. Perhaps, it was the realization that I would never again have the opportunity to be in the presence of those who are so dedicated to making a positive difference in society. During convention, Tomson Highway, renowned Canadian playwright, novelist and musician, told delegates he has always seen trade unions as “the guardians of human dignity.” Perhaps, it was the realization that I no longer had a central role in policies and campaigns to continue that custodianship.

Or perhaps, some of it was Parkinson’s. About 15% of PwP do exhibit symptoms of a neurological phenomenon called involuntary emotional expression disorder (IEED.)  It is a “non-motor” symptom of PD that is not well understood.  In any case, those who experience it find themselves, for example, being tearful in a manner disproportionate to a particular event.  Over the past several years I had noticed a change in my “sensibilities” such that I would be close to tears during commercials on TV – and these were commercials about new cars and household products, not intended to be tearjerkers! Of course, this change could be attributable to personal weakness rather than to PD, and you realize that as a man, I am not prepared to admit such a thing openly.  Should I be embarrassed?  I am not really. I am just trying to figure out what is happening and trying to do so in a reasoned fashion. So, I am going to blame it on Parkinson’s.

Anne remarked several times during the week that she felt as if she were accompanying a rock star, as everyone wanted to reach out and touch me. Her words, not mine. It was a bit like that.  But truth be known, I wanted to touch you as much or more. It was my opportunity to have tactile contact with some of the most dedicated individuals I have ever had the good fortune to encounter. And it would very likely be the last time – just a fact of life. I will leave multiple farewell tours to Kiss, Cher, The Rolling Stones and the Beach Boys.

There were many handshakes and hugs. Oh, there were a few (but very few) fake hugs as not everyone was a friend of mine within the union, and polite protocol prevailed. This is not surprising.  What was surprising to me was the genuine, warm, heartfelt reception I felt had from everyone I encountered. Rest assured, it was reciprocated.

I must offer a sincere apology to many of you though as I am afraid what you received was a very sweaty hug from a PwP.  In fact, sweating uncontrollably (hyperhidrosis) for no apparent reason is another symptom of PD and is often an early warning sign although it is not the same for everyone. PD affects the autonomic nervous system such that it loses its ability to regulate the body. Excessive perspiration may also be a consequence of PD drugs such as Levadopa that is critical to manage symptoms such as tremor. 

My first memorable encounter with this problem was when I was working on an election campaign for a candidate at a local polling station. I was literally dripping as I examined the voters’ list. I am certain workers at the poll were less than thrilled but I hope my candidate realized how much sweat I put into her campaign! At convention I am surprised that you didn’t back off and say: “Get away from me you great sweaty beast!” You are to be commended for your politeness, or perhaps you were a woman who was suffering through a hot flash and the feeling was mutual.

At the end of the week, I was happy as the kilometers clicked back up the tracks towards Ottawa. I had a great time overall. I was proud of the work that my former colleagues produced in order to make convention a huge success setting the path for another two years. But most of all, I was happy to be headed back to our garden – time to put it to bed for another year. Snow would be soon upon us and I had already begun the intellectual enterprise of plotting human intervention (for better of for worse) into Nature’s master plan to recreate another garden to stimulate and excite our senses, and challenge our abilities. Hmmm, sounds like the subject matter for another blog.

In the case of gardens, they definitely do not listen to my admonitions not to go away, and when I turn around they are gone. 

Still beautiful but almost gone (for the winter.) Photo: S. Marshall

Still beautiful but almost gone (for the winter.) Photo: S. Marshall

Parkinson’s: Identity Crisis? Who? Me?

Not surprisingly, upon discovering that I have Parkinson’s, I began a process of reassessing who I am.  Some might say I was having an identity crisis but I prefer to say that I was searching for the answer – with apologies to The Killers  http://www.youtube.com/watch?v=RIZdjT1472Y who sing

Are we human or are we dancer?

My sign is vital and my hands are cold

And I’m on my knees looking for the answer

Are we human or are we dancer?

This song has been bouncing around in my brain for some time. It is funny what you think about when you are gardening. Only I was singing (badly out loud, but perfectly in my head) alternately:  “Am I Parkinson’s or am I gardener?” Or “Am I human or am I Parkinson’s?” The third possibility, “Am I human or am I gardener?” was never really an option. Parkinson’s is part of the equation no matter how you look at it.

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Who fills those shoes under the hat? Photo: S. Marshall

I am not sure how far to proceed down this road as I see a huge warning sign that says “CAUTION: Sharp Turns, Philosophy ahead!”  So I will try to steer clear of homespun philosophy as much as I can (philosophers would delight in picking holes in my logic anyway,) and stick to the conundrum that Parkinson’s presented for my self-image. Oh oh, warning sign: “CAUTION: Foggy Patches, Sociology Ahead!”   

Like many others I suspect, I kept my diagnosis of Parkinson’s secret from most of my work colleagues, and most of the rest of the world. I told only a very few trusted colleagues, some close friends, and my family of course. I was not yet prepared to face life with the label “Person with Parkinson’s (PwP)” stamped on my forehead. At least that was how I perceived people would perceive me. [Why am I thinking of Charles Horton Cooley’s Looking Glass Self?] Anyway, this was probably moot as, in retrospect, my tremours were certainly noticeable to anyone who was half paying attention. Still, I felt that if I admitted to having Parkinson’s it would negatively affect work relationships and cast doubt upon my capabilities and capacity to do my job.

It wasn’t until I had formally announced my retirement with a firm date, that I began to process that I really do have Parkinson’s and it would (and will continue to) influence my self-identity. By the time of my retirement dinner, I didn’t really care if anyone knew and I began to speak more openly about it, and word began to slowly “leak out.” It was neither controlled nor orderly. I lost track of who knew and who didn’t. But my self-image and identity were in a state of anomie [Damn, what is Emile Durkheim doing in here?] Who was I? And what were the expectations?

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Does this False Spirea have an identity crisis? Photo: S.Marshall

I realize that we go through life playing many parts. Oh oh, “CAUTION: Overacting Possible, English Literature ahead!” Shakespeare penned this famous monologue in As You Like it around the turn of the 17th Century.

All the world’s a stage, And all the men and women merely players: They have their exits and their entrances; And one man in his time plays many parts …

Of course I have had many roles in my life – son, brother, husband, father, uncle, academic, teacher, colleague, activist, boss, to name only a very few.  The expectations for each role had to be learned and I performed some better than others.  As each role unfolds, it brings me closer to the grand finale. As Shakespeare concludes

… That ends this strange eventful history, Is second childishness and mere oblivion, sans teeth, sans eyes, sans taste, sans everything.

Wow!  That seems much too serious to contemplate at the moment. There can be no doubt that I will die – sometime – but I need to know the essence of my identity, and what informs that identity as I shuffle along that path.

Once my work persona began to recede and the inevitability of being a retiree crystalized in my brain, the realization that I am a PwP also took up permanent residence.  At this point I actually wanted to tell everyone I met, no matter how well I knew him or her, that I have Parkinson’s. “Hello, my name is Stan and I have Parkinson’s.” Or, “Hi Sarah, haven’t seen you for awhile. You know I have Parkinson’s eh?  I had to forbid myself deliberately from making it the initial and primary topic of conversation. It was taking over my consciousness while it was attempting to take over my body.

Strangely, it is a bit like your first love when you want to tell the whole world that you are in love – shout it from the rooftops as they say. Only, you can’t be in love with Parkinson’s, can you?  But, when it is such an integral part of your self, a part you cannot shed (at least not at the present time,) do you have no choice but to accept that you are Parkinson’s, and to love that reality? It is the only reality you have. (Whoa, I promised there would be no homespun philosophy here.)

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A beautiful rose for your lover. Rosa Morden Centennial (H.H. Marshall) Photo: S.Marshall

Many PwP perform heroic feats of human and physical endurance, or continue with productive and creative careers. They continue with a preexisting reality or create a new alternate reality. They are to be greatly admired as they raise awareness to Parkinson’s in ways that few others can. I often wonder if their self-identity is more closely tied to their pursuits or to Parkinson’s?  A question for another day as I cannot answer it.

For most of us, our expectations and goals are modest but vital to the condition of our existence. We know that physical exercise and proper nutrition are correlated to well being in a Parkinson’s body.  Making our bodies move in some way each day is a goal in and of itself, as is ensuring that we have proper nutrition. Maintaining an optimistic outlook, taking advantage of support groups within the Parkinson’s community, and seeking advice and treatment from an integrated team (ideally) of health and social services providers are all vital to our being able to slow the progression of this relentless disease and alleviate its symptoms. We do this ourselves, with our families and with our caregivers. It is a difficult road for most of us and we must be ‘comfortable within our own skins’ to meet the challenges.

OK, let’s cut to the chase.  And I truly believe what I am about to say. Without human complicity, Parkinson’s does not diminish the human soul; it does not diminish the joys or exacerbate the sorrows that we all feel in life; and it does not break the human spirit. In short, Parkinson’s is only greater than us when we let it be greater than us. But rest assured, it is ever a part of us.

For me this means I am human (although some may question this assertion.) I am Parkinson’s, as Parkinson’s is a condition of being human. And I am gardener, mostly by choice and environment, but a case could be made, given my family history, that there is a genetic component. (You know, the apple not falling far from the tree – OK, OK, that is resorting to cliché to make a point.)

So, why did it take so many words to get to this point? Because that is precisely how many words, no more and no less, it takes to reach this conclusion.

Or

As my father would say before he became “sans everything,” ”you get better results in the garden if you fertilize liberally with manure at the right times.

You decide.

Afterword

Just be thankful that I spared you a convoluted exegesis on ‘life’ as thesis, ‘Parkinson’s’ as antithesis and ‘living with Parkinson’s’ as synthesis, with apologies to Karl Marx. I also considered an examination of Id, Ego and Super ego with apologies to Sigmund Freud. Perhaps another time, eh?

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These monster sunflowers didn’t need any manure to grow out of control. Photo: S. Marshall

 

Diagnosis Parkinson’s: The artist and the Gardener

Time in the garden time is partly about reflecting on the past and all its complexities, and partly about planning for the future and trying to keep that from being too complex and stressful.  Whether I am pulling unwanted plants, planting new ones , moving some which just do not fit where they are any longer, or admiring the beauty of the blooms and foliage, as well as cardinals, goldfinches, hummingbirds, bluejays, and non-flying creatures such as voles, it is the most peaceful time in every day.

There is no single aspect to our garden. There are many micro-environments/climates and locations around our somewhat small property and a few stops where one can admire different perspectives, or a specific surprise hidden amongst the shrubberies.  Each stop provides a sanctuary from the harshness of life, not by permitting you to forget, but by permitting you to come to grips with those matters free of external stress.

A high level view of the main garden (click to enlarge)

A high level view of the main garden (click to enlarge) Photo: S. Marshall

One of my first reflections after diagnosis was how I was genuinely relieved that I had Parkinson’s Disease (or a “Parkinsonism”) as the doctor first framed it. That may seem very surprising given that most people appear to be devastated when they receive the news (or so I have been told,) even if they suspected that they had Parkinson’s for quite some time before receiving the official word from their physician. 

Reflection should not be this stressful Photo: S. Marshall

Reflection shouldn’t be this hard  Photo: S. Marshall

By saying that I was relieved, I am in no way trying to diminish the severity of Parkinson’s. It is, after all, a progressively degenerative disease which has no known cause, is incurable (at present) and manifests itself in quite different and difficult ways in each individual. It is a disease which no one wishes to have. I didn’t and I don’t now. 

In my case, I had been struggling with severe pain and tremor in my left leg and foot for approximately a year. Visits to my physician and a referral to an internist did not yield any relief or potential for an accurate diagnosis. To be fair, I did have swelling in both legs and feet which had been present for quite some time and became exacerbated in my left leg when I suffered from an infection (cellulitis.)  Interestingly, a Nursing Assistant at a Community Clinic where I was having my dressing changed asked whether I knew that my leg shook and whether I had raised it with my doctor. She undoubtedly had some experience with Parkinson’s in her community workplace setting and probably knew more about it than my physician.  Subsequently, I did raise it with my physician but it did not seem to be high on the list of matters to explore.

As luck would have it, my physician had take some time off and another physician took up the practice as a locum. One look and I was referred to one of the foremost physicians in Canada dealing with Parkinson’s and muscle movement disorders.  After a short wait for an appointment and some non-invasive testing, including a nerve conduction test in my legs, Parkinson’s was the word.  It was a relief.  At least now I knew something and had a place to start.  I knew  that Muhammed Ali and Michael J. Fox have Parkinson’s and  that you can live with Parkinson’s. Now I had to figure out how I could live with it.

To continue my journey to diagnosis, the aforementioned cellulitis was treated but the pain persisted, as did swelling in my legs. The pain was, in retrospect, quite excruciating. On any given day, on a scale of 1 to 10, where 1 represents “negligible” pain and 10 represents “I want to cut my foot off” pain, I was regularly between 5 and 8 in degree of severity. I am not sure how I was able to continue working in a job that was very high pressure and demanded, at minimum, 12-hour days. It was probably adrenalin that kept me going but that was not to be sustainable in the long run. I would collapse at the end of each day in an effort to do pain management, and even that was little more than painkillers (non-prescription) and falling asleep from exhaustion. Morning usually found it to be much improved, only to have my condition deteriorate throughout the day.  My decision to retire was made even before medication improved the situation considerably.

At this point, I should say that I am eternally grateful to those who had the prescience to negotiate both an excellent pension plan and excellent extended health benefits for retirees at my workplace. Without these and a public health care system (although it is always under threat of privatization,) it would have made any decision to retire very difficult and perhaps impossible.

After some experimentation a change in blood pressure medications alleviated the swelling in my legs. All too often I suppose, diagnoses and treatment are confounded by many variables, not all related to one specific disease or problem.

The pain in my feet was still persistent and was of two types:  burning, tingling pain often associated with diabetes; and what I call “solid” pain in my toe joints which seem to be “numb on the inside but still sensitive to touch on the outside” along with a feeling of swelling in my foot even though no swelling was present. Medication has largely alleviated the burning, tingling pain but the joint pain, numbness and other general pain, remains. A daily pattern of feeling good or even great in the morning and early afternoon, to feeling shakier with increased pain levels, and nerve “popping” in the late afternoon and evening, persists. I suspect I will be reading much more about “wearing off” and optimum timing for medication.

Of course, now that I have been spending quite a bit of time researching, reading and learning about as many aspects of Parkinson’s as I can, I have begun to put my mind to the degenerative nature of PD. I am determined to delay its progression as much as I possibly can. I keep a positive attitude, try to exercise daily, eat healthy and nutritious foods to see if I can stave off the seeming inevitability of increased disability. And daily, I consider what future burdens I am placing upon my wife Anne and my children.  

While the Twitterverse is a great place to be in touch with other persons with Parkinson’s, and I am learning so much from you, I am also acutely aware that caregivers shoulder a huge burden of responsibility – physical, fiscal and financial, social, emotional and psychological.  I am only beginning to understand their struggles and the ups and downs that they face on a daily basis but it is very clear to me that these men, women and children are very brave, unselfish, loyal and loving souls. They are to be admired greatly and are to thanked profusely for their many sacrifices.

The relationship I have with Anne is beyond anything that I had ever encountered.  I hesitate to write further personal thoughts as I know that she reads this blog (but has no authority over editorial content) and I don’t want to tread outside of any comfort zone in terms of what is private and what is public in our lives.  Fortunately, my PD is advanced only to the point of being a nuisance largely, although I know it must concern her when I am in pain. While I can still do many of the things that I could before, I know that she is watchful of my activities and attentive to any changes in my movement or demeanour.

Anne decided to retire in August 2013.  She wanted to spend more time on her hobbies (beading, sewing, quilting) and on her art.  Her paintings can be found at http://fineartamerica.com/profiles/1-anne-marshall.html if you wish to view them.  She also wanted to spend more time at home as I am retired. Our relationship is such that we can spend very long periods of time together with no adverse consequences. One might think that she was retiring to be at home to care for her husband who has PD but I don’t think that is entirely the case. I think that she wanted to spend more time at home with her PD husband to enjoy these months/years, however long it might be, before care giving becomes primary. To me, that is most unselfish and is a great gift to me.

I fear I have run on far too long once again.  Let me close by saying that our garden benefits from Anne’s artistic palette of creativity, attention to design, colour and light, and from my attention to details and from my labour. It is a unique partnership, one which brings us both enormous joy – Anne’s from the broader vistas as seen in the overview of our garden above, and mine from the challenge of creating and re-creating the space for harmony in the garden (see under construction below.) In every way, Anne is the artist and I am the gardener.

Under construction (click to enlarge) Phoyo: S. Marshall

Under construction (click to enlarge)   Photo: S. Marshall