Short, Pithy and/or Pissy Posts No. 3 : My Answers

Short, Pithy and/or Pissy Post No. 3: My Answers

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A reader called me the old fashioned way the other day, on the telephone, to tell me that I must answer the questions I left dangling in SPPP No. 2. I hate that because it is a lot easier to ask questions than to answer them. Well, here are my answers.

Question: Are there any songs about bleak towns?

Answer: Yes, but my two favourites are both by Bruce Springsteen, My Hometown and Death to my Hometown with its compelling Celtic rhythm and lyrics accusing and convicting corporate power of bringing certain death to his hometown without the use of guns or bombs and without penalty. Released in 2012 Death to my Hometown updates My Hometown, which presciently paints a poverty-stricken future from the vantage of 1984 economic and trade policies. Together these song-writing gems form a powerful political analysis spanning four decades. The analysis is bleak and is no longer “the future” but “the present” for many towns in Canada and the USA.

Question: My future’s so bleak I have to wear [fill In blank.]

Answer: [A SAD light.] Seasonal Affective Disorder (SAD) is a problem for many who live in northern climates. Long dark winters can cause general depression (winter blues) in some individuals. I believe my mother’s circadian rhythm was sensitive to changes in natural light living as she did in northern Manitoba where the average hours of sunlight decrease from 280 in June to 85 in December and in central Saskatchewan where the decrease from an average of 375 hours in June to 75 hours in December is even more striking. SAD lights are an attempt to mimic natural sunlight alleviating symptoms for suffers.

As a slogan or hook, “I have to wear a SAD light” is an utter failure as it fails to tickle whimsy or to stir the body and mind to overcome adversity. Perhaps manufacturers and retailers of SAD lights will be happy but I just don’t see the marketing attraction myself. The bleakness in Springsteen’s passionate lyrics and music can be overcome only by changing the balance of class power as intersected by the politics of the struggle for fundamental human rights.

Question: Did I choose the path with Parkinson’s or did it choose me?

Answer: No one in his or her right mind would take an oath of fealty to Parkinson’s disease if s/he had even half an idea of what that would entail. Parkinson’s is an insidious disease that slowly and surely sucks life and independence from you and does not have the decency to kill you. I am but one of over 100,000 Persons living with Parkinson’s (PwP) in Canada and while I have suffered from the predictable decline in health for a relatively short period of time compared to many others, I assure you that I am not being overly dramatic about its effects. Walk one day in my shoes ….

Question: What happened anyway?

Answer: An interconnected series of expected events and experiences that were to be my life were nudged off course and shunted to the sidelines by an unexpected series of events and experiences that became my life. It is a happy story except that Parkinson’s threatens to write a difficult ending.

Question: Maybe it’s a Town Without Pity (Gene Pitney 1961)

Answer: In 1961 Gene Pitney’s Town Without Pity was riding a wave of middle class economic prosperity. Love and the politics of the Vietnam War were at the centre of teenage angst. The hollowing out of the American industrial heartland that spawned Springsteen’s two ‘hometown’ songs was not yet upon us. That is not to say that Town Without Pity was shallow but it is to say that the dialectic between capital and labour was not manifest as class politics in the 1960s and frankly has been barely on the radar since then. US President Trump’s election unearthed an irreverent populism with ad hoc nationalist and dictatorial tendencies. In Canada we have emerged from a decade of right wing politics to embrace once again the soft middle. If we are honest, the political mood in both countries is closer to Town Without Pity than it is to Bruce Springsteen and Death to my Hometown.

Another reason I like Springsteen: he has made 11 “surprise” appearances at the main concert of the Light of Day Foundation, which has raised more than $4 million for Parkinson’s research over the 17 years of their winter festival in Asbury Park. See also Light of Day Canada.

(749 words)

© Stan Marshall (The PD Gardener) 2017

LEARNING TO WALK AGAIN … OR … READING BETWEEN THE LINES

Learning To Walk Again … Or … Reading Between The Lines

Author’s foreword

Readers of this blog know that I have been accused of (and admit to) writing extremely long blog posts with content that takes many twists and turns before finally arriving at some evident, or not so evident, conclusion. Now, I am aware that many people neither like, nor read, lengthy posts and they have articulate reasons for their inaction and inattention.

Equally, I am aware that there is a long and honourable tradition among those who love newspapers (and especially among those who impress upon others that they read their broadsheet newspapers from cover to cover,) to read the headline, a few of the sub-heads and first sentence and then move on to the next article. Naturally, they look at the photos – in a kind of reverse approach to how many men say they read Playboy or Penthouse. 

Today, I acquiesce to this reading style by writing in a form to match i.e., this post will consist of one headline with five sub-heads and respective opening sentences mimicking the content many readers would actually read even if the article were thousands of words longer.  I approach this project fearfully as it is a major departure from my usual style and so many words will have to die in the editing process. Read on to see how this works out.

PERSON WITH PARKINSON’S RENDERED IMMOBILE

The PD Gardener, having walked and cycled almost all of his life was understandably shocked at becoming almost completely immobile i.e., not able to walk without assistance, over a very short time span (4 – 5 days.)

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The PD Gardener doing what he does. Photo: Anne Marshall 2014

Looking for answers (in all the wrong places?) 

“Doctor, Doctor, Mister M.D. Can you tell me what’s ailing me? “ (Endnote 1)

and

Knee bone connected to the thigh bone

Thigh bone connected to the hip bone

Hip bone connected to the back bone (Endnote 2)

The above lyrics sing to me as I struggle to understand the crisis that currently engulfs my body and brain but unfortunately the answer seems locked forever in a “song that never ends.” (Endnote 3)

‘Advance’ and ‘progress’ are positive words, aren’t they?

It is a sobering moment when you realize you are ticking off the progress of your new and/or worsening Parkinson’s symptoms on a mental score card of scientifically established, empirical milestones signifying the intractable advance of Parkinson’s.

Symptoms defy explanation say medical specialists

“Appointments with various physicians, surgeons and other health professionals have left us confused and frustrated.”

The new normal 

Physiotherapy, Pilates and exercise show definite promise to lead the way back to a new normal … but why does the new normal feel like walking on bubble wrap?

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Better take provisions if the journey is 1,000 miles like this first mile.  Photo: The PD Gardener 2015

Next step
“It is often said that ‘a journey of 1,000 miles starts with a single step’ (end note 4) … but the importance of finding the start line and the correct direction should not be underestimated,” the PD Gardener notes sardonically.

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Perhaps the answer is just around the corner and down the hill…. Photo: The PD Gardener, 2015

End Notes

  1. “Good Lovin’ “ lyrics by Rudy Clark and Arthur Resnick. Number hit for The Young Rascals 1966.
  1. “Dem Bones” is a spiritual written by James Weldon Johnson circa 1920.
  1. Origin of “This is the song that never ends” or “This is the song that doesn’t end” is unknown but seems to have been made popular by Shari Lewis and Lamp Chop.
  1. Attributed to Lao Tzu, a contemporary of Confucius and a major figure in Chinese philosophy.

© Stan Marshall (The PD Gardener) 2016

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