In the Parkinson’s Garden: Ruminations on Love, Intimacy and Sex

In the Parkinson’s Garden: Ruminations on Love, Intimacy and Sex

Preface

It has been quite some time since my last post. I assure you that I have not been idle, just facing a number of challenges which have required close and careful attention. I have been relearning how to walk after losing this capacity quite suddenly over a period of 4 – 5 days in January 2016. As part of this challenge I had a total replacement of my left knee in late August. I am now a little over two months post surgery and have completed my knee rehabilitation physiotherapy program. I have some things to say about the surgery and the rehab as well as the frustration of losing all capacity to walk and not finding a suitable explanation as to why this should happen. However these are topics for future posts.

The biggest reason for the delay, or should I say hesitancy in making my thoughts public, is the sensitive and tricky nature of the subject matter. While the topic has been bouncing around in my mind for quite some time, personal thoughts about sex, love and intimacy are not something that spills onto the page without some considerable thought – especially because my wife and lover will read it with a most critical eye, and rightfully so (see Note 1.)

OK, you might well ask: “Who in their right mind wants to read a blog post on love, sex, and intimacy through the lens of a 67-year-old male Person with Parkinson’s (PwP.) Already I can hear bleats of protest, if not indignation and outrage, ranging from: “Oh God, No!” “Cover your eyes and ears,” “Spare us!” Yikes!” “Lock up your children,” ”Gross,” “You deviant,” “You pervert” and worse. If these represent the tenor of the thoughts going through your mind, then I sincerely hope that I do not live up (more precisely, down) to your expectations.

To be honest, I do have some reservations about embarking on this journey, mostly because my thoughts on intimacy, sex and love have a much greater probability of being misunderstood than my thoughts on many other topics. Still, I tell myself that I am being honest in my approach and it has never been my intention to write a “tell all story” or an exposé on the sex life of a PwP. Those of you who are expecting a titillating account of sexual encounters (creepy, romantic, or both) or have a prurient interest in the sexual appetites, activities and proclivities of those who suffer from chronic, debilitating disease and find ways to overcome obstacles to intimacy and sexual satisfaction, can look elsewhere.

When I started this post, I wanted to write about how sex, love and intimacy are just as important to Persons with Parkinson’s as they are for so-called “normal” people. More precisely, I wanted to write about a “normal guy with Parkinson’s” who

  • Has dopamine deprivation such that his physiological and the neurological systems are not playing well together;
  • Has so many motor and non-motor symptoms of Parkinson’s that his personality, his essential self, disappears into the visual busyness that is Parkinson’s;
  • Has difficulty making his views heard and understood outside of a very small circle of friends and family;
  • Desperately wants to deny that the disease is not only advancing but will eventually render him incapable of activities of daily living and totally dependent on others for care;
  • Wants to live and feel that complex of human feelings and behaviours we have come to associate with intimacy, love and sex.

Let’s be clear. I am quite sure that any talents I possess as a writer or a story teller will not be adequate to the task of explaining the permutations and combinations of love, sex and intimacy along with the almost infinite number of accompanying human emotions. Nevertheless, I shall do my best to begin this conversation in the only way I know how – using a blend of personal experience, critical self-reflection, knowledge (lived and acquired) , and informed awareness of the issues.

[Please note that I have not included any analyses of the tremendous love and support I receive from my family and friends as it is of a different order of love and intimacy.  If anything they should feel relieved by this omission rather than slighted.]

Two particular unrelated events, one hundred years apart, have been instrumental in the formation of my views on intimacy, love and sex, and on my decision to voice them in a public forum.

So, let’s get started shall we?

Eloping: Guns Blazing?

 [Love was smouldering in the gardens and orchards ….]

What better place to begin a search for true love than with a story about true love. The time is 1915; the place is Deerwood – a small Manitoba farming community on the rail line between Altamont and Miami; and the key protagonists are my paternal grandmother, the auburn-haired Maud Moorhouse, her father Henry Moorhouse, and my grandfather, Robert Egerton Marshall, neighbouring farmer and “ne’er do well.”

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Map showing the proximity of the Marshall and Moorhouse farms

I do not recall my grandparents being wildly in love but obviously there was something smouldering on November 23, 1915 when they evaded the pursuit of the bride’s father to elope and marry in Winnipeg, Manitoba. The story of the elopement has always been told in our family with a certain amount of humour – a story about how Maud (20 years old) and “Old” Bob (15 years her senior) had outfoxed Maud’s father and run off to Winnipeg together. It was pretty racy stuff for rural Manitoba in 1915.

In an undated and unpublished manuscript, Not Because of Beginnings, Dr. H. H. Marshall, the first-born child of the eloping couple outlines the facts of the matter.

“On November 23, 1915, Bob drove his horses the long roundabout way to approach the Moorhouse farm from the Deerwood side, which was mostly hidden from view from the house. A deep ravine crossed the south part of the Moorhouse farm and between the Marshall farm and Deerwood. There were no approaches for three miles to the east but the west approaches could all be seen. While her father’s attention was diverted, Maud walked down through the wooded ravine pasture to meet Bob. They then drove to the railway station at Deerwood, where he had bought tickets earlier. The train was on time and they were on it. Father [Henry Moorhouse] was furious when he learned what was happening but he had been delayed some. He took his good team of horses and a shotgun to follow the elopers but he arrived at the station after the train had left. He tried to follow but was left far behind. Bob and Maud traveled to Winnipeg to be married by Rev. Ridd, a minister who had served at Miami. Henry was forced to accept the situation, although he certainly would have fumed and stormed for some time.”

The story has been told and retold many times over the years (and will continue to be) and each telling will be as understated or as overstated as the teller wishes it to be. Undoubtedly, many of the accounts will contain embellishment in keeping with the storyteller’s character and his/her skills at weaving a good tale. The fun may have been in outsmarting father Moorhouse who would be painted as a gruff old bugger with no love for an underachieving neighbouring farmer almost as old as himself. It could be accompanied with appropriate narrative describing the farming economy of the day and Marshall’s poor prospects coinciding with his decidedly very poor agricultural land, barely suitable for pasture, as the backdrop to Marshall’s desire to spend most of his time on horticulture and fruit growing rather than traditional farming. I have heard some say that he was a “damn poor farmer.” The punch line would be that Marshall’s inclinations were correct and his observations that this land would produce excellent produce led him and Maud to some notoriety as innovators in fruit and vegetable growing and other horticultural pursuits. Not to mention that their genes and the environment they created produced their first-born son Henry who would blaze his own path as an innovator in horticulture. The irony would not be missed in the fact that Henry Marshall was named after his maternal grandfather, and young Henry would soften the gruff old man and become Moorhouse’s (only) favourite among the five grandsons Bob and Maud gave him.

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Maud and Bob Marshall with a selection of their produce. Photo: unknown

Or the storyteller might chose to elaborate on the secretive courtship, the ruse, the deception, the chase and the sweet victory of true love in Winnipeg. The collusion and collaboration by those in the know to ensure that the lovers were able to escape the disapproving father required some intricate maneuvering given the communications of the day. The lovers would be trying to leave unobtrusively. Upon learning of the plan Old Moorhouse would run his horses to the sweat trying to beat the lovers to the train, falling just short; guns blazing as the train sped out of sight.

The best stories are ones that are true for the most part but leave the storyteller some leeway to work magic at the edges of the veracity. What is the real story behind the elopement of Bob Marshall and Maud Moorhouse? Who pursued whom before old man Moorhouse pursued them both? Was Maud’s sister, Ethel, a co-conspirator seeing this as her way to avenge her father’s firm  refusal to approve her own potential marriage? Who knows for certain?  I hope I have the opportunity someday to return to these events so important to my family’s history.

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Henry Moorhouse and daughter Ethel c. 1927. Photo courtesy of Western Canadian  Pictorial Index, University of Winnipeg Archives

For now, I can only say with some certainty that there was love smouldering in my family’s gardens and orchards in those years and that realization is part of the impetus for me to reflect on love, sex and intimacy from the warmth and love generated within the confines of our present day Parkinson’s garden.

Okay, that is the first reason for writing this particular blog posting. As always, it is best not to charge ahead too quickly without understanding all of the antecedent reasons for proceeding.

Wife/Caregiver Takes a Lover

[The honourable thing may be to face the music and end the charade; just don’t expect accolades or applause.]

Some months ago I read an article that I can’t seem to get out of my mind. In Australia the wife of a Person with Parkinson’s, revealed through a Christmas missive to friends and family in 2015 that she had taken a lover while still living with, and caring for, her husband.

The Australian Broadcasting Corporation (ABC.net.au 2016) aired a documentary called The Three of Us: Carer, Husband and Lover which is about … well … about the three of them. The short story is this: Damian, Elaine’s husband, has early onset Parkinson’s and frontotemporal lobe dementia; Elaine, Damian’s wife and ‘carer,’ takes a lover, Trevor; Trevor becomes Damian’s friend, and lives a few blocks away from Elaine and Damian. Elaine and Trevor, it seems, are fine with this arrangement and she reveals all to the world in a Christmas letter – a commonly accepted vehicle for disseminating information – joyful and sorrowful – throughout the Christian world. This function continues even as social media gallops ahead of the Christmas letter curve primarily because the Christmas letter can disguise itself and hitchhike within the links and attachments of social media.

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Christmas letters bring joy and sorrow

I am not sure what to say about Elaine’s letter. Is it a joyful one because Elaine has found happiness and a new love? Is it sorrowful because the marriage between Elaine and Damian has broken down and Elaine has moved intimacy and “romantic love” out … and into another relationship? Is it sorrowful because Parkinson’s and dementia have robbed Elaine and Damian of the opportunity to maintain a ‘real’ marriage (“‘til death do us part”,) with long-term physical and emotional commitment including sex and intimacy? Is it joyful because Elaine has found the wherewithal to carry on as a ‘carer’ fulfilling another commitment in the marriage vows (”in sickness and health”) by providing tender loving care? Is it joyful that Damian and Trevor have established a friendship? Is it joyful for children and/or others in the family who are now freed from the worries of how to provide care for Damian? Or is that sad too?

Interestingly, the hit Netflix series Grace and Frankie has weighed in on the same issue using Alzheimer’s as the disruptive scenario. It is not surprising that mainstream entertainment is latching onto these moral issues as important topics for viewers. After all, millions of people worldwide face this dilemma every day. Grace meets a boyfriend (Phil) from her past. They each have a desire for this relationship to be rekindled when Grace discovers that Phil is still married to Elaine (ironically) who suffers from Alzheimer’s and drifts in and out of reality. Of course, this immediately raises the moral question of whether Grace should date and become a lover to a man still married to, and is caregiver for, his wife – albeit a wife who no longer has her full faculties. Spoiler alert: Grace decides initially that she cannot continue on a path to reunite with the old flame under these circumstances. In a later episode she reconsiders and the relationship continues with a steamy hotel meeting that is interrupted by a call notifying Phil that Elaine is missing. The realities of life with someone with Alzheimer’s hits home and the moral question lays there like ‘a turd on the rug’ as a former colleague of mine used to say. The last I remember Grace is calling the whole thing off … or not.

Wait! The Patient Has a View Too

[Hey! I am inside here, you know.]

Let’s return to the Australian Broadcast Corporation documentary for a minute. Journalist Kirsti Melville takes great care to say that she didn’t expect the husband, Damian, to have a coherent and cogent opinion about the relationship between Elaine and Trevor. However, as the making of the documentary progresses she realized that she was wrong on this score and that she should ask Damian for his views, as he deserved that much respect at least. I personally think that it should have been more than an afterthought but I am relieved that she came to see Damian as a human being affected both by the process and the decision. Quite eloquently, the youngest son expressed his wish that his dad not be “reduced to a list of symptoms,” and Melville seems to have taken that request to heart.

For his part, Damian does seem aware that his relationship with Elaine has changed and that he and Elaine each have a different relationship with Trevor. Damian seems to accept this reality with equanimity in the same way he accepts that his health is deteriorating, that he needs assistance and that life is now better under this new reality than it was previously. Do I sense a hint of relief on everyone’s part here? What if Damian had rejected the new arrangement? Melville concludes the documentary by saying that this is a “gorgeous story.”

As a sentient human being myself, albeit one that has Parkinson’s, the enormity of the sadness I feel whenever I consider the possibility that Anne (my wife and lover) and I would have a relationship other than the one we currently enjoy is so massive that it sends cold turbulence through my emotional self; an icy chill freezes all rational perspective; a numbness deadens sensation in my lips, fingers and hands; and a deafening silence fills a space previously filled with words unnecessary to be said aloud.

It is to be unthinkable, yet it is almost a certainty that Parkinson’s, Lewy Body dementia, old age and worn out body parts, or some combination of those conditions, will upset the apple cart. I am not in the least suggesting infidelity. Rather, I am admitting that changes in physical and mental health bring with them some new rules, and even if a relationship remains emotionally true and intact, it does not remain identical through each moment of time as each year unsympathetically exposes more warts and frailties.

Am I allowed to be sad about these eventualities creeping ever closer into our foreseeable future? Yes, of course. Is Anne allowed to be sad? Yes, of course. But let’s be clear; being sad about the probability of something happening in the indeterminate future is a poor way to live everyday life. It is far better to rejoice in the pleasure of the moment. Uh, oh. Is that too hedonistic? Not for this PwP. I have a pretty good idea about my long-term prognosis and I happily accept any burden hedonism might impose in the short term.

I apologize but unwittingly, I have strayed a little from the main point. Whether we are allowed to be, or should be, sad is not the question. The question is: Are we allowed to move on when (if) a significant change occurs in the conditions within which a relationship lives? That question is not so easy to answer.

On the basis of what you have read so far I wouldn’t blame you for concluding that I think Elaine in Australia is wrong to have taken a lover while caring for her Parkinson’s husband. But to be truthful, I am not sure. What I do know is that I am not qualified to make that judgement. However what I am qualified to do is to ensure that the voice of the person being cared for (the patient, PwP, disabled, person with dementia) is heard and not dismissed as being something other than compos mentis.

No Fighter, Including Muhammad Ali, Ever Went into the Ring Unprepared

[Is thinking too much about bad things a bad thing, or is it just that thinking too much is a bad thing?]

The longer you live with Parkinson’s the more you accept that it is a progressively degenerative disease. It will advance in a predictably unpredictable manner through stages – sometimes slowly and sometimes quickly.  You will feel each new symptom, or worsening of old ones, at the very moment that it occurs. You will choose either to ignore or deny the change but no matter how much you put your head in the sand it will wear you down until you accept the change as the “new normal.”  You are forced to admit grudgingly that Parkinson’s marches on as inevitably and steadfastly as life itself.  You come to understand that Parkinson’s travels incognito for years before it merges with the final steps of life’s journey to reach death, a destination it could not locate on its own.

Oh, there will be “cheerleaders” exhorting you to fight on, to resist, to beat the odds, to delay (or defeat) the advance of Parkinson’s. We all need encouragement to keep active – exercise, cycle, walk, run, swim, box, dance, do physiotherapy, do Pilates, do yoga, sing, play music, write, paint, garden, or do any other activity to keep our minds sharp and our bodies in fine fettle. In combination with diet, medical devices, pharmaceuticals (old and new) medical procedures and surgeries such as DBS (deep brain stimulation) or duodopa intestinal pumps and transdermal delivery systems, physical activity gains a better quality of life for us, over a longer period of time. The problem is: I know that, at the present time at least, I cannot outlive Parkinson’s anymore than I can outlive death, no matter how many cheerleaders there are on the sidelines.

There is a maxim, “We do not die from Parkinson’s but we will die with it” which implies that Parkinson’s is not a cause of death.  While it is largely true, it is not the whole of the matter. There are many symptoms of Parkinson’s which appear to aid and abet death at the very least. For example, The Michael J. Fox Foundation claims “the leading cause of death in Parkinson’s is aspiration pneumonia due to swallowing disorders.”  In addition to dysphagia we could add depression and loss of balance as other factors leading to death. You may have died of a brain injury when your head hit the ground, but the ‘real’ cause of death was that you lost your balance and fell because you have Parkinson’s.

Why does the maxim “We do not die from Parkinson’s but we will die with it” bother me? Aside from the fact that there is a question as to its veracity, it effectively minimizes the onerous path that Parkinson’s can take you along before you die. There is no cure for Parkinson’s, just as there is no cure for death, and I can expect that my body and/or mind will decline significantly along the way because my symptoms will intensify and multiply. Having Parkinson’s places your life at a point closer to death than it would be otherwise. In other words, you have a  shorter life expectancy if you have Parkinson’s.

Many of you will feel that I am being defeatist or depressing (if not depressed.) You would be wrong. If you want to give it the good fight you have to know what you are up against. No fighter, including Muhammad Ali, ever went into the ring unprepared. I am telling you though, that the mental preparation necessary to face the probability of altered personal and intimate relationships is the toughest preparation I have ever had to do, maybe even tougher than facing the physical demands of Parkinson’s itself. The energy and focus it has taken to write this blog post is but a small part of this preparation. There are no blueprints or manuals. The challenges are different for each individual and vary according to stage of disease development.

Of course, many PwP turn to clerics armed with Faith and religious texts or counsellors armed with knowledge from social – psychological studies to provide the  strength to buttress yourself against the physical, social, mental and spiritual turmoil you will face. Choose the approach (or more than one) with which you will be most comfortable as you travel on your journey: Yoga, meditation, Pilates, faith, spirituality, religion, love of family, exercise, or any other of dozens of choices, will give you peace and serenity.

I suspect that only the strongest of relationships are long-term survivors of a Parkinson’s diagnosis. After diagnosis it is not long before work colleagues and other friends drift away but they may well have done so anyway, after the workplace connection is broken by long term disability or retirement.   Outside of personal intimate relationships, the toughest loss to deal with is the loss of “close” friends who will exclude you because … I am not sure why. Perhaps, your interests and/or lifestyles diverge or they may buy into the belief that Parkinson’s is associated with cognitive decline. In the wake of such losses, I comfort myself with the knowledge that very few people keep good friends for a lifetime even in the most ideal circumstances. Still, these are not the relationships with which I am primarily concerned as my thoughts are focussed on relationships involving love, sex and intimacy.

What Does Baseball Have To Do With It?

[Whatever gave me the notion that people would continue to play fair when they fell “out of love” is beyond me.]

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The Major leagues were a long way from our little ball field. Photo: S. Marshall 2015

It might seem trivial at first but when I was a lad of about eight years old, Roy Campanella, star catcher of Major League Baseball’s Brooklyn Dodgers (1948 -1958) was one of my heroes. Campanella broke into the major leagues in 1948, one year after Jackie Robinson broke the colour barrier. Unfortunately, Campanella’s career was cut short by an automobile accident that left him a paraplegic. I thirsted for knowledge about Campanella back in those days but we did not own a television and radio reporting was sporadic in rural areas, although my little transistor radio could pick up faraway ball games on crisp late summer and early autumn evenings after local stations reduced their wattage. Moreover, there was no library in Altamont, Manitoba so my father arranged that I could have borrowing privileges with the University of Manitoba Extension Library from which I could order books to be sent by mail. I recall devouring The Roy Campanella Story by Milton J. Shapiro (1958).

Then about a decade ago I read something about the breakdown of Campanella’s relationship with his second wife that profoundly saddened me. The exact sentence is still fresh in my mind. “Campanella’s wife Ruthie, unable to cope with the loss of physical intimacy imposed by the accident, left him” (see Note 2.)  In other accounts I read that she would leave their home in the evenings flauntingly seeking male companionship. For some reason this repulsed me greatly and even though I knew that Campanella had his own share of infidelities over the years, I had great sympathy for him. I am not going to go into a long discourse on this matter other than to say that I was repulsed by what I perceived as a deliberate and flagrant desire on Ruthie’s part to hurt Campanella, a man who could neither fend for himself nor defend himself. I guess this is a variation of the old idiom “don’t kick someone when they are down” and appeals to some sense of “fair play” – that people should not play “dirty.” Is this an accurate interpretation? Probably not and it probably doesn’t really matter to most people, but that is how I felt when my brain first processed this information.

And Then Ruby’s Feelings Must Be Considered

[this song will not end with Ruby and her man getting back together.]

The perils of love, intimacy and sex as experienced by Ruthie and Roy Campanella was brought sharply back to my memory in the song, Ruby Don’t Take Your Love to Town written by Mel Tillis and originally recorded by Johnny Darrell in 1967. Waylon Jennings, Roger Miller, George Jones and many others have covered the song but it is Kenny Rogers’ release in 1969 that is accepted as the best version and a blockbuster hit. The original lyrics were about a veteran of the Korean War and his wife, but in the late 1960s people widely believed it to be about the Vietnam War and Rogers’ release of the song was very controversial at the time.

I personally don’t associate the song with either Korea or Vietnam but when I hear those mournful lyrics

It’s hard to love a man whose
Legs are bent and paralyzed
And the wants and the needs of
A woman your age, Ruby, I realize

I cannot help but think of Roy Campanella. Of course Tillis’ lyrics, written for public entertainment and mass consumption, are among the best in a long tradition of ‘hurtin’ country and western music, a mixture of everything good and bad about love and deception. In the end, even the murder of the offending wife is contemplated but that deed cannot be fulfilled leaving … what? … a disabled man helpless; Ruby free to do what she pleases; and a clear indication that this song will not end with Ruby and her man getting back together.

And if I could move, I’d get my gun
And put her in the ground
Oh, Ruby, don’t take your love to town
….
Oh, Ruby, for God’s sake, turn around

In any case, about a year ago I heard Ruby Don’t Take Your Love to Town and I remarked to some friends that I thought it was a terribly sad song. I relayed my understanding of the situation faced by Ruthie Campanella when Roy was left paralyzed and how she couldn’t cope with the loss of intimacy and sought to fulfill those desires elsewhere. Perhaps I have been too quick to criticize Ruthie (and Ruby in the song) because my comments were met with a sharp retort from a female friend, “For God’s sake, get over it! Why shouldn’t she find someone else?”

OK then. There we have it. Or, do we?

Romantic Love

[Unlikely as you may think it to be, some lads hunger for a tender kiss.]

When and where do boys first become aware of romantic love? I doubt if it is when they begin to read the sports pages or gossip columnist stories about sports heroes such as Roy Campanella or in the top 10 pop hits list of the entertainment section. I am convinced it happens much earlier but be relieved that I am not going to go into a psychological exegesis about memories of being birthed or suckling at my mother’s breast as my first formative moment(s). [I am not sure that I did suckle at her breast for any extended time, as breastfeeding was not in vogue during the 1940s and 1950s in Canada.]

But if birthing and breastfeeding were defining moments, I don’t recall it that way – in fact, I don’t recall that part at all. Rather, my first memory of such a thing called love between two humans – a love that was not a familial love but a love that encompassed intimacy – was the love my Uncle Henry and Aunt Eva had for each other, at least as I witnessed it as a child. Yes, this is the same Henry, first-born child of Robert and Maud Marshall after they eloped in 1915. In retrospect I am convinced that my aunt and uncle had a tenderness and a tangible common understanding of commitment that exceeded the norm for most other relationships – I say this confidently as I reflect on my own 60 plus years of study as a participant observer of human behaviour (non-scientific I grant you but observational data points nonetheless.)

As this is not a “tell all” blog post (it is hardly even a “tell something” post) don’t expect me to go into great intimate detail of my uncle’s and aunt’s lives spent in love, other than to say that there is something about a chance observation of a noon hour kiss on the lips, a genuine tender kiss, neither a peck nor a slobbering, groping tonguing, that left this small boy entranced, longing to know the secret to such an uninhibited demonstration of love. I witnessed this portrayal of affection many times in my formative years when my uncle would arrive home for lunch, having spent the morning in the gardens and greenhouses of the Brandon Experimental Farm. On occasion they were a little more demonstrative and disappeared into their bedroom for some cuddle time. I spent a few weeks each summer at the Experimental Farm with my cousins and the expression of genuine affection between my aunt and uncle never changed over that time. Low key, long term, lasting, love. What I witnessed was neither titillating nor tawdry but it was a powerful introduction to what I believe is the most powerful of human feelings.

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Henry and Eva Marshall Photo credit: unknown

It seems that my remembrances of my aunt’s full bodied gentleness, my uncle’s strong gardening hands, and their lips caressing in a short soft noon time kiss create the ideal segue for me to talk about love in our present day garden.

My Love Affair With Roses

[Thorny as they may be, it is impossible to plant a rose without giving it a hug. See Note 3]

Some might say that the men (and some of the women) in my family loved their gardens and orchards more than they loved their women (or men.) I like to think, somewhat selfishly I suppose, that the quantum of love is equal in each case and this is perfectly in order as long as the love for your human lover is of a magnitude required to sustain the relationship over a lifetime.

This history of love for gardens and orchards in my family may go some distance to explaining why I seem to be having a love affair with roses this past year. It is not entirely surprising that roses should seduce me now. Oh, we have always grown a few roses, mainly those developed by my uncle, Henry Marshall, who was instrumental in developing the Parkland series of roses at the Morden Research Station (see Note 4) but to say that I was crazy in love with roses before this year would be incorrect.

There is no doubt about it; this year is different. I now have a full-blown infatuation, or dare I say, fixation, or maybe obsession, with some specific species and varieties. Under normal circumstances one might interpret such a state of mind as being one of great joy but in the sanctuary of my garden, alone with my innermost reflective thoughts, the joy of being so intimately close to a beautiful rose that her love bites are evident in the sanguineous contrails on my arms, is often tinged with the sadness of knowing that my desires are partly the last ditch efforts of this gardener (the PD Gardener) to experience as completely as possible one of the most sought after perfections of love – roses – before he is no longer capable of the husbandry required for them to flourish and the mental acuity required to bask in the romance and intimacy that they proffer.

Not surprisingly I guess, I have been reflecting mightily upon life and love, especially life and love in a world with Parkinson’s disease, my constant and most abusive companion.   I have come to look to the rose, iconic as it is of love, to override the ravages of Parkinson’s, to perfume the ether for lovers whose wings take them to those lofty heights, to provide the beauty that is in the eye of the beholder. I desire desperately to be in that select category of “lovers” known only to poets, song writers and composers – you know those romantics who make you want to hurl your stomach contents into the shrubbery and who, at the very same time, make your insides come alive with butterflies of anticipation as you sense the presence of a new lover. [The difference between literary excellence and soap opera cheesiness gets a little muddied sometimes.]

It is small wonder then that this is the year of my love affair with roses. For this year I crave reassurance in all matters of love, especially as the staccato ‘rat-a-tat-tat” and “thrum thrum” of the advancing drums of Parkinson’s often obscures mellow intimate tones, and may even cause them to flee. The Parkinson’s drum corps is relentless in exhorting the destruction of the final few neurons capable of dopamine production. It has been a difficult year with many health challenges nipping at my heels at a time when I maybe won’t be kicking up my heels quite so much in the near future. I desperately hope this prediction is not the case and that The PD Gardener has many more years of flirtation with flora of all species.

In my sanctuary, in my garden, I stay the course, gather my strength and turn a deaf ear to Parkinson’s heartless beat. The garden works a therapeutic magic, magic so strong as to suppress temporarily the tide of muscle movement disorder and non-motor symptoms. It grants me peaceful interludes to reflect on my family and good fortune.  In the garden I am mostly a labourer, often a gardener, sometimes a landscaper, occasionally a naturist, once in a blue moon a horticulturalist, frequently a social historian, and always an amateur philosopher.  I know deep in my heart that each role cannot save me, individually or collectively, from Parkinson’s. But these roles, individually and collectively, provide vehicles through which flora in general and roses in particular (at least this year) seduce me into accepting that, even outside the garden, I am loved as much or more than I love.

Having a new desire, a new focus for your attention, is an important part of the seduction.  There are many new roses on the market making a trip to the nursery even more exciting than usual. I find myself hanging around the rose sections of various garden centres, surfing the Internet for new information and photographs, and being distracted anytime I come near a rose. I have relentlessly pursued some varieties, unsuccessfully as it turns out, until my children hooked me up on blind dates.

To be clear, my affections run strictly to shrub and rugosa roses. I have little interest in tea roses or other roses that I consider high maintenance and finicky. And if it is not hardy to our climate (zone 3 or possibly 4 in some isolated micro- environments in our garden,) I don’t have much use for it either. I am not a protective kind of guy when it comes to roses in winter and I leave them to fend for themselves no matter how severe the weather during those months. They live or they die. If they die I am sad of course but I accept no blame – winter is winter and largely beyond our control. Oddly, I do become more protective when it comes to hot weather or arid conditions. I do want the roses to survive heat waves (and we seem to be having more of these periods as the planet heats up.) I will water roses to keep them healthy and to ensure that they bloom profusely.

It is not easy to describe my love affair with roses but let me try by describing some romantic interludes with several “Rosa.”

Rosa x ‘Oscar Peterson’

I had my eye on several young roses but it was Rosa x ‘Oscar Peterson’ who lured me into a tantalizing, thorny and crazy love affair. This newest rose in the Canadian Artists Series is named in honour of jazz great, Oscar Peterson. I know, Oscar Peterson is male and I am not gay so what is the attraction? In my world, roses are always referred to as being female but in fact, roses are hermaphrodite plants i.e., they have both male stamen and female stigma on the same flower. Monoecious plants have separate male and female flowers on the same plant, and Dioecious plants have only one flower, either male or female, on each plant. Consequently feel free to refer to roses as female or male as is your desire.

Rosa x ‘Oscar Peterson’ is not shapely but is an almost compact square at 1.5 meters x 1.5 meters.  Its buds emerge with the colour of Creamsicles (one of my favourite childhood treats) before maturing into pure white blooms with yellow stamens – no less inviting.

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Rosa x Oscar Peterson  Photo: S. Marshall 2016

Oscar Peterson’s developers were clear in their evaluation of the rose that it met the standards of excellence exemplified by Oscar Peterson as a musician and they encapsulated those thoughts as follows:

“Oscar Peterson’s music was seamless, as if it flowed from his fingers like a spring of clear water. Those who understand music know that such perfection is the result of hard work and endless practice.”

“It is fitting that the new ‘Oscar Peterson’ rose has attributes of perfection. Its flawless, deep green foliage acts as a perfect foil for blossoms that appear as if from a never ending floral spring. These glossy leaves are the result of the hard work and patience of generations of breeders who have worked to create roses with superb hardiness, disease resistance and great beauty.”

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“The semi-double flowers begin life in a shade of softest yellow cream, especially in cooler weather. Often the tips of the petals are lightly touched by red. Soon cream turns to glistening bright white and a contrasting boss of golden yellow stamens. The flowers are arranged in sprays, and, like a musician who finishes his set with style, the petals drop cleanly away once the show is over.”

Far be it for me to attempt to wax more poetic than the above passage to explain why this white rose should be named for a Canadian black musician whose music captivates our minds and captures our hearts, rendering us defenseless to resist its charms. The subtlety and simplicity of the melody cavorting with the complexity of the phrasing plays delicately upon our emotions equally as much as it plays with our emotions, lifting us to the very height of hopefulness, far away from the din of despair. Don’t believe me? Listen to Night Train (released in 1962) the landmark album of the Oscar Peterson Trio (Peterson, Ray Brown and Ed Thigpen.) https://www.youtube.com/watch?v=Dyip9jykZ7o

For me, this is enough said. However, others who are more closely attuned to the sociological phenomena of race, culture and inequality have voiced their view that it is appropriate that the rose named for Peterson is white as it fits his blend of jazz – ‘White’ and not ‘Black.’ Others attribute this white rose faux pas as yet more evidence of a white culture’s ignorance of the racial dynamic.  I fear this horticultural and socio-cultural debate will have to await another occasion – perhaps when another of my favourites, Erroll Garner’s Concert by the Sea, can be introduced into evidence.

Rosa x ‘Emily Carr’

I really must apologize as I intentionally told you a little “white” lie in the previous section – Rosa x ‘Oscar Peterson’ was not my first dalliance in the Canadian Artists series. About three years ago we came upon Rosa x ‘Emily Carr’ with her clusters of deep red blooms calling out for your attention at all hours of the day … and night for that matter. While she is advertised as being wider than she is tall, in our garden she sends up canes 8 feet tall (almost like a climber) on which she proudly displays clusters of  gorgeous blooms continually through the hot and steamy summer.  Surprisingly though she does not rest until a hard frost halts her in her tracks.

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Emily Carr Photo: S. Marshall 2016

“You come into the world alone and you go out of the world alone yet it seems to me you are more alone while living than even going and coming.” ~ Emily Carr

Such a bleak picture to paint. Being alone is a complete package from birth to death and in between. It can be a sad thing but it need not necessarily be so and we often choose to be alone at various times in our lives. Indeed, we are often happy to be alone at those times. Being lonely though is a different matter and is by definition sad as it means the soul is not being nourished. I am not a religious person so I will resist the temptation to speak of faith in a Supreme Being as nourishment, but I know for a fact that the “quiet nothingness” of a loving relationship with another sentient being is indeed nourishment for my soul. [I will elaborate more on “quiet nothingness” later.]

 “Be careful that you do not write or paint anything that is not your own, that you don’t know in your own soul.” ~ Emily Carr

This is a most difficult stricture to follow but I have to say that, even as a want-to-be author, when I do know something in my soul, the words fly off my fingers as if by ordinance finding their place on the page even before meaning, context or content is fully fleshed. Conception and birth occur in one singular flash and there is no room to be alone in that moment of spontaneous combustion, that instance of chemical reaction, that indefinable electrical spark giving life to foggy neurological pulses within our brains.

However, if you have been fortunate enough to know that “quiet nothingness” of love “in your own soul,” you will spend your lifetime searching for ways to express it. I have no intention of competing with Elizabeth Barrett Browning’s straight to the point question in Sonnet 43 How do I love thee? (see Appendix A.) Let me count the ways, of course. But that is exactly what knowing love in one’s soul should be. While the letters may fly off my fingers, I still search for words, phrases and punctuation to convey the perfect image for love. I invariably fail as my talents as a writer are woefully inadequate to meet the task. I do not possess otherworldly attributes necessary to paint the page with words that would liberate love from the constraints of a Parkinson’s world where one’s soul, no matter how willing it is to being a host for love, is rarely sought out for that purpose.

Rosa x ‘Hope for Humanity’

It was in a previous quest for a rose to represent Jean Madill, a centenarian from Altamont, Manitoba, that I began to explore the depths of the new roses. “Hope for Humanity” attracted my eye not only for its beauty but for the political statement that she makes – it is uncommon for the names of roses to be overtly political but Dr. H. H. Marshall did not shy away from politics when he named one of his roses, Adelaide Hoodless, an early suffragette and feminist with both conservative and progressive tendencies which was not uncommon for women of her time.

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Rosa x Hope for Humanity   Photo: S. Marshall 2016

Oh, There Were Others, I Confess

[… and they are all named Rosa ….]

I am afraid that there were others on whom I showered my affections and with whom I spent more than a few afternoons cavorting in the dappled shade of the garden; a few mornings frolicking with my toes moist with dew; hypnotized in cold early October by silvery ‘pre-crystalline’ raindrops on leafy vestments; hungering in early summer for the sweet nectar enjoyed by their rotund Apis mellifera lovers but forbidden to me; caressing the softness of their blooms whilst striving (unsuccessfully) to avoid the bloodthirsty thorns protecting their bodies; being intoxicatingly dizzy from the fragrance of forbidden love in the dusk of the day (or perhaps it is intoxicated by their dusky fragrance at any time of the day.) I say this unashamedly as I now admit openly that I have succumbed to their big city, sophisticated, hybridized ways.

Should I name names? I am not going to go into great detail about the attributes of all of these loves, all named Rosa, as it will be too time consuming, but there are several that deserve more attention. See Appendix B for still others.

Rosa x ‘Campfire’

‘Campfire,’ named after a famous painting by renowned Canadian artist Tom Thomson, was released in 2014. The description on the Canadian Artists series website pretty much says it all.

Campfire, the painting , shows a fire burning in front of a tent lit inside by a brilliant yellow light. It is a masterpiece of design and colour. The rose ‘Campfire’ is afire with the same smouldering blend of yellows and reds.

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Rosa x Campfire Photo: S. Marshall 2016

Rosa x ‘Campfire’ shows a profusion of blooms with colours that are both bedazzling and mesmerizing. Of course I am drawn back to my childhood and the many times I stared into the flames of a campfire while camping, at a family “wiener roast” or at the teenage triple X rated (for offensive language, drunkenness, overt attempts at sexual activity however inept, and outright teenage stupidity) version of a wiener roast. No matter the context, you cannot help but be drawn into Campfire’s flames where your desires, excited by the heat, race through your arteries in a desperate attempt to carry oxygen to the “smouldering” coals, freeing any inhibitions. If you place ‘Campfire’ within the context of sex, love and intimacy, its mass of blooms might very well conjure up the word “orgy.”

Rosa x ‘Bill Reid’

Rosa x ‘Bill Reid’ is a rose I longed to acquire because we had no surviving yellow or gold roses in our garden. A small yellow tea rose did not survive the winter a few years ago leaving us without the sunny spectrum. ‘Bill Reid’ is named for a legendary broadcaster, writer, poet, storyteller and communicator who introduced much of the world to the art traditions of the indigenous people of the Northwest Coast.

“His legacies include infusing that tradition with modern ideas and forms of expression, influencing emerging artists, and building lasting bridges between First Nations and other peoples.”

“He combined European jewellery techniques with the Haida art tradition. His passion for Haida art was kindled by a visit to Haida Gwaii in 1954 when he saw a pair of bracelets masterfully engraved by the great master carver and his great-uncle, Charles Edenshaw, after which, to use his own words, “the world was not the same”. For the next 50 years Reid embraced many art forms. His many powerful sculptural masterpieces include The Raven and the First Men, the Haida creation story, and The Spirit of Haida Gwaii, showcased at the Canadian Embassy in Washington, D.C. and at the Vancouver International Airport.”

“The Bill Reid rose is reminiscent of the medium the artist Bill Reid often used: gold. The rose itself has a vibrant golden hue, which it retains even under the strong rays of the summer sun. The colour denotes energy, warmth and vitality. And much like the artist, the Bill Reid rose flowers prolifically, more so than other yellow roses. In true Canadian fashion, this rose is hardy to zone 3.”

Needless to say I was thrilled to come across Bill Reid, quite by accident, at the garden centre. In fact, it was early one Monday shortly after opening, and I was at the cash when a supplier for the nursery was unloading a small wagon load of roses. There was Bill Reid, tucked in the back of the wagon, in full golden glory highlighted by the early morning sun. I asked if it was for sale and was told yes but it hadn’t been priced yet. I was unconcerned about the cost as I was smitten with it from first sight and after the business dealings were completed I whistled my way home excited by the knowledge that I would soon hug Bill Reid and position him in a suitable sunny spot.

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Rosa x Bill Reid      Photo S. Marshall

Every once in awhile there are love affairs that remind you that the course of young love does not always run smoothly and that you should be cautious, especially in the early stages. So it was with Bill Reid. It was not long before I noticed some vile critters inhabiting Bill’s foliage and blooms. They looked very much like the Japanese beetles that have a voracious appetite for soft rose petals. Immediately I began the ugly process of picking the beetles off and depositing them in a solution of detergent and water. As I write this, I have quite a horrific soupy mess in that container. My objective is to contain the invasion although I have discovered that the beetles also love Canna leaves and Lythrum flowers. After several days my picking finally slowed down but I am realistic enough to know that an infestation will be avoided only if my neighbours are as diligent as I am in harvesting the little buggers (a word my father would definitely use in this circumstance.) To make matters worse the Japanese beetles dine on some 200 different species of plants. I will make every effort to avoid using pesticides.

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Japanese Beetle   Photo: Wikipedia

The meeting and courtship of Bill Reid was quick, easy and intense. However, as is often the case, inattention to certain health matters may strain the relationship in the short term if not in the long term.

Rosa x ‘Marshall’s Peace Garden’

Rosa x ‘Marshall’s Peace Garden’ is a ‘sport’ of the popular Morden Blush, bred by Dr. H. H. Marshall and a favourite of ours for many years. I am counting on Marshall’s Peace Garden to capture my heart and make me blush with its abundant creamy white flowers and glossy foliage on a tiny 2 ft. x 2 ft. frame. I am told that it has a wonderful fragrance but as I have Parkinson’s most of my sense of smell disappeared long ago. Listed as hardy to zone 2 there should be no winter-kill problems in our area.

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Rosa x Marshall’s Peace Garden          Photo: S. Marshall 2016

My particular affinity for Peace Garden stems from the fact that it is named in honour of my uncle Henry who was a member of the Board and Horticultural Planning Committee of the International Peace Garden (see Note 6.) Peace Garden was propagated by Terry Roszko, Canada, circa 2000 and introduced commercially in Canada by Jeffries Nurseries Ltd. in 2012 as Marshall’s Peace Garden Rose. In fact, the specimen that I planted just this morning was a gift from my daughter and her partner who made a side trip to Jeffries Nurseries while visiting family in Manitoba, carefully bringing Peace Garden’s spiky fullness as carry on luggage on their flight home. I had been trying to source Peace Garden locally without success. When my daughter and her partner surprised me by introducing Peace Garden on a blind date if you will, the excitement of meeting this unexpected and beautiful rose was palpable.

Sex, Love and Intimacy

[Put sex, love and intimacy together in one human relationship and ....]

OK, enough with the roses. Back to the main topic. Many people are too shy, inhibited or embarrassed to talk openly about sex, love and intimacy, preferring to keep such information close to their vests or perhaps close to their hearts? Others succumb to a commonly held societal belief that these emotions and thoughts are “dirty” and not to be discussed “in polite company.” Still others would allow that only researchers with a PhD in psychology and a specialization in sexuality be permitted to explore these basic elements of human instinct, analyzing and discussing it in ‘academic – speak.’ Heaven forbid we should actually feel something.

Sex, love, and intimacy are three of the most important words in the language of relationships but I suspect that they are three words often shunted to the sidelines because, when spoken aloud, these words cause us to be awkward and self-conscious about what we perceive to be personal and private matters. Yet, love, intimacy and sex make sense only in the context of a relationship between at least two individuals so absolute privacy is automatically abandoned upon the necessary formation of a single dyad (sounds like an oxymoron.) In other words, by definition, there is always someone else who has inside information on your love life, your comfort level with intimacy, and your sexual proclivities. So, let’s not get too hung up on an argument that personal and private matters are … well… personal and private, belonging only to ourselves as individuals.

It is also the case that love, intimacy, sex are often compartmentalized and treated each unto itself as a separate concept, with separate meanings and a separate set of feelings … and sometimes they are distinct. Language, being the primary vehicle for discourse among humans, must possess a certain precision that enhances understanding. But surely that does not mean that we must always drill down in a reductionist way to the most infinitesimal element. Having said that, while it is true that a convincing argument can be made that love, intimacy and sex can be defined individually, it is only when these three powerful human emotions and behaviours are put together in a ‘mash up,’ as younger folk say these days, that the truth is revealed. They are really individual recognizable segments of something that is greater than the sum of its parts. Regular readers will recognize this as a recurring theme in my posts – society is greater than the sum of its parts. I blame it on Emile Durkheim and my training in sociological theory.

Let’s complicate things just a little more by adding that in today’s world much emphasis is placed on the use of “clear language” in an attempt to cut away the superfluous, to enhance communication so that ideas can be discussed with equal precision among all participants irrespective of class and other social or economic divisions. I understand the necessity for clear language in many situations but I don’t subscribe to the “clear language is always better” approach. I believe that it takes many levels of discourse to understand the complexities of life. Oh sure, sometimes language is frustratingly complex, unnecessarily obtuse, and gratuitously verbose but a living language will evolve both to smooth out the rough edges of precision and to give precision to the softness of fuzzy articulation. The aggregation of several meanings into one concept or construct is one such smoothing technique which allows language to reach precision through a higher level of discourse.

Let me illustrate it this way: put love, intimacy and sexuality together in one package in the entertainment industry and you have a blockbuster hit rocketing to the top of the charts – “number one with a bullet” as DeeJays used to say. It will hit the jackpot, be a winner, a jewel, and ‘toadilly awesome.’ It will also, most likely, be fiction. But put love, intimacy and sex together in one human relationship and … well … (thinking … thinking … thinking)… there are no words …. and it (the love, the intimacy and the sex, individually and collectively) will inevitably be real –  often sought, rarely realized.

I know, you are thinking, “The PD Gardener is off on one of his tangents again, spouting off about things of which he knows nothing.”  Hmmmm … maybe, maybe not.   Stay with me to find out if I can tie up this seeming stream of consciousness with a pretty bow.

Love is “Quiet Nothingness”

[ … a life free of drama …]

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Image from Wikipedia

Obviously I am not the first to have contemplated the complexity of sex, love and intimacy and the importance it plays in our lives. Cheryl Saban has a series of short posts on the topic that are worthwhile reading. I am not going to summarize her thoughts but I will draw your attention to a couple of specific observations. The first of which is that she is writing from a woman’s perspective when she observes that a female’s sex drive is more than just survival instinct.

“As a species, our sex drive is a survival instinct. But as a female, your sex drive is obviously more than an instinctual need; it’s wrapped up in feelings of comfort, love, companionship, excitement, naughtiness and hope.”

Well, I have news for you; these feelings are not reserved for females alone. Still, I suspect that in my early, more macho male life, my desires and emotions were not anchored in this approach. I had a process of maturing to go through, including a divorce and a somewhat painful but finally fruitful search for my – Gawd, I can’t believe I am going to say this – “soulmate.” As much as it pains me, I will leave the forgoing sentence in tact as “soulmate” does have meaning in romantic discourse to most people and that is that common understanding I wish to convey here. But there is more. In fact, what I was searching for and what I found was a relationship where love, intimacy and sexuality are in a state of ‘quiet nothingness.’ [Okay, I am counting on you not to shout “drivel” and hit the escape key to exit this nonsense. Please bear with me.]

Do not take this literally to mean that sex, love and intimacy are nothing because it is impossible to conceive of “nothing” unless we also acknowledge the existence of “something.” Put differently, we can approach a state of “nothing” but we cannot achieve a state of “nothing”.  To approach “nothing,” “something” is minimized or simplified to its most basic ‘somethingness’. I like to think of it as an expensive sound system with a complicated soundboard where all the elements of great sound are captured but everything is turned to its minimal reading. We hear nothing but the lights are lit and flashing. Intimacy, love and sex are in “quiet nothingness,” simmering, occasionally showing energy genuine to each element but always at the ready to arouse positive emotion. The simplification and minimization means that the relationship is held in tact with little work. Achieving this state of “quiet nothingness” is to achieve a state of togetherness of two minds and bodies, perhaps analogous to Zen. A key descriptive phrase for me is “free of drama.” I have been truly fortunate in that I know first-hand what that state of mind and body feels like … but it can be fleeting if one is not careful.

It is no secret that the soundboard controls the eruption of displays of energy from time to time.  When such energy is incorporated into the structure of the music for example – as a bridge, a chorus, refrain, verse, coda (or in any other creative way)  – the music and the sound can approach such perfection that only a highly trained ear can detect the subtleties defining it as otherwise. It is the same with the “quiet nothingness” of love … flying low in stealth mode beneath the radar … lethal in its efforts to target and destroy thoughts and behaviours that inhibit intimacy, and … complicit in bringing to life a sexuality  which would be declared illegal by those who have not experienced “quiet nothingness.”

Parkinson’s is a Troubled Dance of Rationality and Irrationality

[“The only thing we have to fear is fear itself ….”]

Parkinson’s is such a complex of motor and non-motor symptoms that in its early stages we often overlook symptoms related to our psychological well being e.g., it increases anxiety and stress, plays with our emotions and leads us towards feelings of depression and sometimes despair. So we begin a troubled dance between rational and irrational thought especially when it comes to love and intimacy.

I reason (rationally and correctly I believe) that the further I travel along the Parkinson’s road, the greater the probability that the usual nasty features of Parkinson’s including Lewy Body dementia will compromise my ability to sustain an intimate relationship.  How tragic that would be! But let me be clear: as I write this there is no tragedy in my life and each day is replete with reaffirmation of my love for Anne and her love for me. Still, even the most serene individuals have anxieties and are susceptible to irrational thinking from time to time. Parkinson’s provides sustenance for those anxieties, keeping them on a slow burn until fear and insecurity blows them out of proportion.

Fortunately most anxieties are relatively minor and can be handled effectively with planning and successful experience e.g., anxiety about how Parkinson’s will behave when traveling or when attending a special event. Other fears are more serious e.g., a fear that your Parkinson’s creates an unbearable burden for your spouse, partner and/or lover leading to a tragic end to an intimate loving relationship. In matters of the heart the emotional roller coaster of Parkinson’s can entice you into jumping too quickly and erroneously to that conclusion. In fact, insecurities may spawn unacceptable jealous behaviours that put enormous strain on intimate relationships, perhaps to the point of breakdown.

You might ask the question: Why would a PwP want to destroy happiness and contentment and replace it with a tragic heartbreaking ending?  Rationally, there are no compelling reasons to do so but when you are trapped in the world of irrationality where Parkie lives, fear can become an almost crippling burden, and if we are not careful, it can become a self- fulfilling prophecy.

Perhaps Sir Francis Bacon was correct when he wrote “Nothing is terrible except fear itself”) or maybe we should attribute it to Franklin D. Roosevelt, the 32nd President of the United States, who said in his first inauguration address on Saturday, March 4, 1933

“… let me assert my firm belief that the only thing we have to fear is … fear itself — nameless, unreasoning, unjustified terror which paralyzes needed efforts to convert retreat into advance.”

Parkinson’s disease is a fearsome thing. It can strip you of every dignity at a moment’s notice if you are not attentive to your medical, pharmaceutical, psychological. dietary and physical regimes. It is not stretching it to say that Parkinson’s plays a wicked game of chicken with you in your social relationships. It dares you to consider that it has not diminished you. Maintaining your mental strength in the face of such a challenge is extremely difficult because you notice and feel any newly acquired Parkinson’s symptoms so acutely that you are certain the unreasonable demands of your Parkinson’s are denying your spouse, lover, partner a full and complete life. The threat to the viability of your relationship is real and you take full ownership of that ‘failure’ because it is your Parkinson’s disease that is responsible.

Not only is the PwP responsible for the burden but the onus and indeed the impetus is on that same PwP to “free” her/his lover so that s/he may leave the relationship (or any part thereof) to pursue a full and more complete life elsewhere, maybe with someone else. Voilà, guilt free extraction from a life of burden for which you ‘did not sign up.’ Okay, maybe there is some guilt but it is ameliorated by a complex of rationale and justifications. These fears and insecurities are real to a PwP … well, they are real to me anyway.

Facing a life with Parkinson’s alone is extremely difficult. Facing those travails as a couple in an intimate relationship or as a family can make the journey more tolerable but it also means that the path may grow bumpy if one of more of those individuals go outside the understandings of the others. If the commitment is love and the understanding is that love is sexual, intimate and forever, and one individual no longer accepts this commitment, the whole deal goes sour – sometimes very quickly.

I am in a loving relationship and I would never say that my lover should end it because I have Parkinson’s. Why would I be so foolish? We have a love that is exquisitely painted, as if the muse was in full control; a love with great swaths of colour and texture like fields of lupins strewn in purposeful abandonment by Mother Nature; a love brushed into place with the precision of computer technology and the creativity of the Group of Seven.

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Mother Nature’s portrait of a field of Lupins   Photo: S. Marshall 2014

It is true that Anne does provide care for me … but she does not identify herself as my caregiver nor do I want to reflect her role back to her as that of being a caregiver. Anne is my wife and lover. It is also true that I thank her every day for her support … but I am most thankful that we share a love that is not rooted in caregiving. My greatest task is to return her love by projecting myself as her husband, lover, friend and not as her patient or worse, as her burden. Maintaining and strengthening relationships is much easier if one can avoid using pathos as the glue that holds the relationship together.

Relationships and Adversity

Okay, so far so good, but the bad news is that “quiet nothingness” is not impermeable and there are many threats to its fabric e.g., a diagnosis of a terminal or chronic disease not only changes how you perceive yourself but how others perceive you. This certainly has been my experience after a diagnosis of Parkinson’s disease – a progressive neuro-degenerative disease for which there is no cure. Oh, there are medical, pharmaceutical, physiotherapeutic, psychological, and exercise/movement programs designed to enhance quality of life but inevitably your life will take a path that you would not choose if you had a choice. The rules of the game for relationships may change and the potential for increased tension and stress increases along with a concomitant likelihood that “drama” will result.

When a relationship is under stress you might think that the survival instinct would kick in to override any “soft” emotional feelings, but that is not what happened to me. By the time of my diagnosis of Parkinson’s, I was in my mid – 60s and procreation was far behind me. I already had four perfect daughters in a perfectly blended family.

When I attempt to isolate the key factors contributing to my emotional well being, I am hard pressed to come up with any that are more important than feelings of self-worth. You see, Parkinson’s robs you of your sense of self-worth; it diminishes you. Like a thief in the night it silently robs you of your ability to be the strong one in a relationship. Ironically and wickedly, that same attack on self – worth robs you, as a person in need, of the ability to accept assistance and care, and you can lash out at those who care the most; those who love us; those with whom we have intimate relationships.

If you do have an illness though, life and relationships can change drastically. Karl Robb sums it up this way,

“Realize that an illness can either help bring you and your partner closer together or push you further apart, depending upon how well you are able to cope with challenges and the strength of your bond, prior to illness.”

I am not as charitable as Robb in that I don’t think that Parkinson’s brings many people closer together, at least not in the long term. There is no cure.  It is progressively degenerative and it will advance in both the number and severity of the symptoms.  No matter what some people say, you cannot delay its onslaught forever. It will catch up to you, one way or another.

Indeed, my perception is that if you and your partner didn’t get along well before your diagnosis, it is a good bet you won’t get along any better after diagnosis and certainly not after nasty symptoms or side effects of the drugs begin to rear their ugly heads – dementia, dyskinesia (exaggerated involuntary muscle movements which are often the side effect of the drugs,) cramping, difficulty swallowing, loss of balance resulting in falls with injuries, incontinence, constipation, rigidity, Bradykinesia (slowness), decreased sexual desire and increased sexual dysfunction, hallucinations, violent lashing out during vivid dreams, and loss of the ability to conduct activities of daily living, to name but a few. None of these symptoms are known to increase the likelihood of developing an intimate relationship if there is no prior history of such a relationship between individuals. Parkinson’s works against you every step of the way.

The Importance of Intimacy

[As we slide closer to each other, my lover whispers provocatively, “… and she felt the gardener’s work roughened hands on her skin …”]

When Parkinson’s destroys intimacy in a relationship, it wins. You slip from being lovers to being caregiver and patient, a misstep (in my view) that changes how each person perceives the other person and in the end destroys any sense of self-worth a PwP has remaining. Once the non-PwP in the relationship believes that intimacy, love, sex (and sexuality) are no longer important in the relationship, the gig is up. I hasten to point out however that the same is true if a PwP is no longer is invested in maintaining an intimate relationship with her/his partner.

Cheryl Saban describes succinctly just how important romantic intimacy is.

“Romantic intimacy and the idyll of two people bonded in love, that most sacrosanct of emotional states, is something most of us desire and in fact, need. Love is a crucial part of our lives, connected as it is to our sense of well-being and worth. The blend of love and sex requires commitment, a special type of chemistry between the two of you, and an ability to build intimacy.”

Intimacy is a word that is both innocuous and intimidating. At first glance, it seems to be something less than ‘love’ but upon closer examination it is a keystone in the foundation of close relationships. Being intimate with someone, while not the same as being in love, is something we are likely to experience with very few others in a lifetime … if we are so fortunate.

Jonathan Lenbuck in “How does sex differ from intimacy,” defines sex and intimacy in ways that I find very helpful to understand the role Parkinson’s plays in relationships.

“Intimacy is at the heart of a strong relationship. Intimacy is about knowing someone deeply and being able to be completely free in that person’s presence. It is an emotional state that is often reserved for just one person.”

“Being intimate with your partner requires you to be open and honest with him or her, and it is from this state of intimacy that great sex grows. This can sometimes be a hurdle in a relationship.”

Undoubtedly, young onset PwP are at a time in their lives when dating and sexual relationships occupy proportionally greater space in day-to-day relationships compared to those of us who are diagnosed in our 60s and heading into our 70s. A reduction in the amount of time, effort, money, etc. put into a sexual relationships is likely for those 60 years of age and older, but don’t ever fall into the trap of believing that it occupies no space in those relationships. On the contrary, love, intimacy and sex may be more central to living a healthy life with Parkinson’s (is that an oxymoron?) than we think. Hopefully some of us have found a relationship that satisfies our physical and emotional selves. I was going to say that some are patiently waiting for such a relationship but it is more likely that they have given up the quest, giving in to impatience rather than patience, resigning themselves to never finding this nirvana. Some are living in relationships devoid of love and intimacy (and probably sex) but do not take measures to change. Some of us live a bittersweet existence with memories of the ecstasy of being in love and the heartache of a life gone too soon.

Pay Attention

[Be careful, the rules can change…]

Parkinson’s changes the rules of intimacy. The inability to show emotion (particularly laughter) through facial expression, (the “mask “associated with Parkinson’s) can change the dynamic of a relationship which relies upon knowing and almost invisible facial cues and eye contact. Involuntary muscle movements can make even simple loving actions such as hand holding or cuddling impossible or so difficult as to be frustrating for both you and your partner. The excitement of close sexual contact – so thrilling and rewarding in the prime of your life – is often turned cruelly against you, as if your Adrenalin has been turned on to hyper speed, increasing debilitating involuntary muscle movements and rendering both intimacy and sexual gratification unattainable. Such frustration can exacerbate issues of erectile and sexual dysfunction already prevalent in Parkinson’s.

Changes in self-perception and how others see you can spark a destructive mutually reinforcing downward spiral (the more your self-worth is diminished the more you engage in behaviours that reinforce that self-image and the more you project a picture of low self-esteem to others which in turn contributes to others behaving differently towards you and on … and on.)

No matter the stage of the progression of Parkinson’s, any couple in an intimate relationship will face the almost ever-changing challenge of maintaining a relationship that provides food for the emotional self. The European Parkinson’s Disease Foundation (EPDF) has an excellent article on intimacy, sex and sensuality.

“If you are in an intimate relationship then you will both probably experience some difficulties regarding intimacy, sex and sensuality. These can be associated with anatomical, physiological, biological, medical and psychological factors, all of which can impact on self-esteem, quality of life, mood and relationships.”

In no uncertain terms, the EPDF alerts us to potential dangers and urges us to pay attention to intimacy, sex and love because they impact on our sense of self – worth and our ability to combat Parkinson’s, to the extent that we can combat it.

img_0006

It may appear beautiful but it is quite frozen and dead  Photo: S.Marshall

Some may argue that intimacy can be based on caregiving. Perhaps, but that intimacy is of a different nature – in fact, it is nurture. Nurturing can be intimate but it is not the whole of an intimate relationship – the “quiet nothingness.” The step from sexual intimacy to caregiving intimacy is a large one. Once one stops desiring a partner sexually, perceptions on both sides of the relationship equation are turned – probably irrevocably forever. At this point it matters not whether your mother/father, your sister/brother, your wife/husband, or a paid caregiver from a public not-for-profit or a private for-profit agency is caring for you. The intimacy is gone – and you just can’t get it back.

Conclusion

[We carry these desires with us to death, illness or not]

If you think that Persons with Parkinson’s (PwP) are not sentient, sexual, sensual human beings then disabuse yourself of that notion immediately, especially if you are the significant other of such a person. I am entering the “early elderly” – a stage of life where I do not wish others to deny my right to desire love and intimacy. If you think that we don’t have such desires, you diminish us as human beings.

If you have accepted “cargiving” as the only meaningful relationship that you share with your PwP partner, then at least understand what that means for each of you. As a PwP, I would be grateful for the care, but I would saddened immensely more by the loss of love and intimacy – you see, that loss transforms care giving into an obligation and therefore a burden.  It is likely that by the time this transformation took place, I would be incapable of doing anything about it, other than to look quite pathetic and therefore even more expendable in emotional terms, making the situation all the more catastrophic and tragic.

Finally, I may have Parkinson’s disease but I am not looking for a caregiver, I am looking for love.

AFTERWORD

[You never promised me a rose garden …”]

This has been a story of family, love, sex, intimacy, fidelity, roses, Parkinson’s (the rational and the irrational) and its ravages, self-worth and relationship survival. I hope it has provided some insight into what a PwP … well this one at least, thinks about these matters.

Ever since I began my affair with the roses this past summer, my lover is fond of saying, “ you never promised me a rose garden but I should have known better because I am married to The PD Gardener.” My comment is that The PD Gardener (both the gardener and the Parkinson’s disease) was residing within me when we met, courted and married but Parkinson’s only stepped out of the shadows recently. The rose garden though is a family characteristic. In many ways it is a family heirloom. It came with me but I did not create it.  Roses are my link to the past, my anchor in the present, and my guide to the future with the additional benefit of being an iconic gift to my lover.

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The PD Gardener and his lover 2015

I sometimes joke that the irrational thinking arising from Parkinson’s gives me only one fundamental concern. Anne has a brother and a sister and each of them has been married three times. This is the second marriage for both Anne and me.  My concern is that Anne may wish to marry a third time to catch up to the family average (it’s a joke remember.) Of course, there is every likelihood that Anne will outlive me and she may well marry again after I have left this mortal coil. Let it be known that with whatever ego that Parkinson’s has not stripped from me, I do fantasize that I am her one and only great love … but I know that our “quiet nothingness” does not include unreasonable strictures that exceed the bounds of my lifetime.

My most fervent desire is that our relationship continues on in “quiet nothingness” – love, intimacy, sex, all with no drama. However, if there is to be drama let it be with my caregiver and not with my lover.

The path through this blog has been circuitous as usual: from the elopement of my grandparents to a PwP’s wife taking on a lover; from baseball to country and western hurtin’ music; from love affairs with roses to the many ruminations of a PwP on love, sex, and intimacy; from fear to insecurity to trouble to “quiet nothingness;” and much more.  I began this journey with ruminations on love, sex and intimacy. It ends as a love letter, a love letter that reveals my deepest fears and codifies my unwavering love and commitment to provide nourishment for an intimacy my lover and I will share over our years together.

NOTES

  1. Geez, two paragraphs into a posting about love, sex, intimacy and Parkinson’s and I am already bringing down the mood with a “Note.” Sorry about that but I find it necessary to provide some context and juxtaposition for these concepts and to advise that these words are always presented “in no particular order” throughout this text.  Sex is the “hard” word in the triumvirate and intimacy and love are the “soft” words. Sex can be reduced to the enactment of basal instinct while intimacy and love rest in the innermost niches of our secure selves (when all is right.) Love is virtually impossible to measure – according to MarsBands.com there are over 97 million love songs in the world. Intimacy is often secretive and may be intimidating. Sex can be either a dominant feature or a silent partner and sometimes masquerades as “sexuality,” a seductress embodying desire and lust. In any case, rarely are all three found in perfect harmony within a single human soul. Such harmony is contingent upon the degree of equilibrium (and disequilibrium) created by these three powerful human forces as they sing together – either in harmony or discordantly as the moment commands. Mastering the harmony, the contentment, and the equilibrium is one of our greatest challenges to ensuring that a soul is at peace.When communication between two individuals is sufficiently advanced to articulate such contentment, [I bet you are thinking that I will say “two souls become one” but nope – too sappy, done at too many times at too many weddings] then tranquillity and quietude subsumes all tempests in human emotion, whether in a teapot or on stormy, high seas. There is no need for these souls to be lashed to the mast; they are free yet secure against the buffeting of dark forces within our psyche and free of any temptation to follow the song of the Sirens (female and male.)
  2. Encyclopedia.com, Notable Sports Figures | 2004 | Belfiore, Michael copyright 2004 The Gale Group, Inc.
  3. It is impossible (for me at least) to plant a rose without giving it a hug. As I lower the root ball into the already watered hole, I reach around her to ensure that she has the proper orientation and that I can reach the excavated dirt on all sides in order to scoop in handfuls around the rose’s roots. I hand tamp it firmly into place and placing my hands on top of the soil near the base of the union, I give it a final firm caress and press the soil snugly around her. In the summertime, I am most often in the garden in a short sleeve T-shirt.   The result is predictable. I look down at my arms to discover (once again as I never seem  to learn) that my rose has decided to object to the cuddling, if not the coddling, and has bitten me in several places, severe enough to draw blood, running down my arms in streams, drying and sticking to my hair as it as it flows, giving it crime scene worthiness as an image. More than once I have emerged from the rose garden to shouts of “Don’t you get mud and blood all over the house!” And later I am treated to sighs of resignation as my lover states the obvious, “I am married to the PD Gardener. What did I expect?” For my part, I continue to hug my roses as necessary throughout their existence and my arms get punctured and leak blood occasionally. [Did I mention that I hate long sleeve heavy work shirts?]
  4. The Winnipeg Free Press notes that “Marshall, cross-breeding with wild roses he dug out of ditches, oversaw the introduction of over 40 new rose varieties, including the Parkland series.” The rose development program of the Morden Research Station was privatized in 2008 and is now operated by the Canadian Landscape Nursery Association.
  5. Creamsicles were one of my favourite treats when I was a child. Vanilla ice cream on a flat stick with flavoured ice on the outside. My favourite flavour was orange and for a long time I believed there was only one flavour but there are others including blue raspberry, lime, grape, cherry and blueberry. Nevertheless, I still think there should only be orange.
  6. The International Peace Garden was dedicated on July 14, 1932 in front of some 50,000 persons.  A cairn is inscribed with a “promise of peace:”

cairn-peace-garden

“To God in His Glory

We two nations dedicate this garden and pledge ourselves that as long as men shall live we will not take up arms against one another.”

7. “Robin Williams’ Widow Pens Emotional Essay About the Comedian’s Final Days – ABC News – abcn.ws/2di34WH via @ABC

APPENDICES

Appendix A

How do I love thee (Sonnet 43)

How do I love thee? Let me count the ways.
I love thee to the depth and breadth and height
My soul can reach, when feeling out of sight
For the ends of Being and ideal Grace.
I love thee to the level of every day’s
Most quiet need, by sun and candlelight.
I love thee freely, as men strive for Right;
I love thee purely, as they turn from Praise.
I love with a passion put to use
In my old griefs, and with my childhood’s faith.
I love thee with a love I seemed to lose
With my lost saints, — I love thee with the breath,
Smiles, tears, of all my life! — and, if God choose,
I shall but love thee better after death.

~Elizabeth Barrette Browning

Appendix B

Here are some more “Rosa” who have captured my eye over the years. They are scattered throughout our garden. I am afraid I will have to wait for a later post to wax poetic about their qualities.

fireglow

Morden Fireglow  Photo: S. Marshall

prairie-joy-img_7160

Prairie Joy  Photo: S. Marshall

blush

Morden Blush  Photo: S. Marshall

belle

Morden Belle  Photo: S. Marshall

centennial

Morden Centennial  Photo:   S. Marshall

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Morden Amorette  Photo: S.Marshall

REFERENCES AND RESOURCES

Anapol, Deborah, Ph.D. “What Is Love, and What Isn’t?” from Love Without Limits Psychology Today https://www.psychologytoday.com/blog/love-without-limits/201111/what-is-love-and-what-isnt

Australian Broadcasting Corporation http://www.abc.net.au/radionational/programs/earshot/the-three-of-u­­­s-carer-husband-and-lover/7566610

Birth Psychology https://birthpsychology.com/journals/volume-2-issue-4/significance-birth-memories

Canadian Artists Roses http://www.canadianartistsroses.com/en/roses.html

Canadian Geographic http://www.canadiangeographic.com/wildlife-nature/?path=english/species/honeybee

Deeth Williams Wall http://www.dww.com/articles/canadian-designs-morden-%E2%80%9Cparkland%E2%80%9D-roses

Encyclopedia.com http://www.encyclopedia.com/topic/Roy_Campanella.aspx

European Parkinson’s Disease Foundation, “Intimacy, Sex and Sensuality,” updated June 2015. http://www.epda.eu.com/sl/pd-info/living-well/intimacy-sex-and-sensuality/

Gardening.about.com http://gardening.about.com/od/gardenproblems/a/Japanese_Beetle.htm

http://www.greekmythology.com/Myths/Creatures/Sirens/sirens.html

International Peace Garden http://www.peacegarden.com/index.html

Lenbuck, Jonathan, “How does sex differ from intimacy,” World Psychology http://psychcentral.com/blog/archives/2013/04/26/how-does-sex-differ-from-intimacy/

http://lyrics.wikia.co/wiki/Johnny_Darrell:Ruby,_Don’t_Take_Your_Love_To_Town

Manitoba Agriculture Hall of Fame biography of H.H. Marshall http://www.dirtytshirt.net/ahof/ahofmember/marshall-henry-heard/

Mars Bands.com http://www.marsbands.com/2011/10/97-million-and-counting/

Marshall, H. H. Not Because of Beginnings, undated and unpublished manuscript

Michael J. Fox Foundation, FoxFeed Blog, “Swallowing and Parkinson’s Disease,” posted by Michelle Ciucci, November 05, 2013. https://www.michaeljfox.org/foundation/news-detail.php?swallowing-and-parkinson-disease

Oak Leaf Gardening http://www.oakleafgardening.com/glossary-terms/hermaphrodite-monoecious-dioecious/

Pembina Today http://www.pembinatoday.ca/2010/08/09/famed-rose-program-leaving-morden

Poets.org https://www.poets.org/poetsorg/poet/elizabeth-barrett-browning

Robb, Karl “In sickness and in health: Intimacy and Parkinson’s,” National Parkinson Foundation, http://www.parkinson.org/understanding-parkinsons/newly-diagnosed/intimacy-and-parkinsons

Saban, Cheryl, “Sex, Love, Intimacy: Understanding and Enjoying Your Sexuality,” http://www.care2.com/greenliving/sex-love-intimacy-understanding-and-enjoying-your-sexuality.html

Shapiro, Miton J. The Roy Campanella Story, New York: Messner 1958

Sing Out.org http://singout.org/2016/04/11/ruby-dont-take-your-love-to-town/

The Honey Bee Conservancy http://thehoneybeeconservancy.org/2015/09/13/enemies-to-bees-pesticides-and-hybridized-plants/

The Old Farmers’ Almanac http://www.almanac.com/pest/japanese-beetles

Turtle Mountain Star, Newspaper Archive, Rolla North Dakota, May 2, 2011 http://tur.stparchive.com/Archive/TUR/TUR05022011p009.php

Winnipeg Free Press http://www.winnipegfreepress.com/arts-and-life/life/bloom-off-rose-for-morden-breeding-program-100178814.html

© Stan Marshall (The PD Gardener) 2016

Life, Parkinson’s and Boxing: Drama, Comedy, Farce, Tragedy … whatever.

Dateline: January 17, 2015 (Muhammad Ali’s Birthday)

I was always told that a story should have a beginning, a middle and an end. I am about to tell a story here, or a series of stories really, and I am a little unsure how or where to begin, what the middle should be, how it should end, or even what it all means; so bear with me. In the absence of a better place, I shall begin here:

Muhammad Ali turned 73 years old today and seldom does a day go by without a media report on Ali’s struggle with Parkinson’s and the general state of his health. Lately, the reporting has taken on a kind of morbid “death watch” quality that I personally find distasteful. Ali has struggled long and hard with Parkinson’s, a progressively degenerative neurological disease for which there is no cure. The very fact that Ali has waged this battle, every day, 24/7, for over 30 years elevates him, in my books, to the highest level of heroism to which any human can ascend, even without consideration of the multitude of other attributes and achievements for which he is rightly lauded as a true champion.

Born Cassius Marcellus Clay Jr. in Louisville, Kentucky, he converted to Islam in the mid-1960s as “Cassius X” before becoming “Muhammad Ali”. As Cassius Clay, he won the 1959 National Golden Gloves Championship and the Rome 1960 Olympic Gold Medal Championship, Light Heavyweight Division. As Muhammad Ali, he won the Heavyweight Boxing Championship of the World an unprecedented and unequalled three times – arguably the greatest boxer of all time; a refreshing change of pace bringing poetry and pizzazz to secretive gyms previously the domain of stogie-smoking promoters and trainers smelling of liniment; an entertainer who understood the value (and place) of showmanship in boxing; a personality so unique that even though Parkinson’s has softened his voice, it cannot muffle its resonance; a man who promoted not only himself but boxing and his community; a devotedly religious man who stood for his principles and went to prison as a draft resister in the Vietnam era – a position only a few others of his stature considered doing; a Person with Parkinson’s (PwP) who, along with his family, is committed to raising awareness and financial support for research to defeat this final and strongest of his many opponents; an athlete who has become a most cherished champion and hero for those of us living with Parkinson’s as we continue our own long march into an unsteady future with a disease which is degenerative, debilitating, and disabling. Parkinson’s disease has no cure and if we don’t die from it, we will most certainly die with it. The very fact that Muhammad Ali resists its finality fuels us in our own unique struggles with Parkinson’s.

Ali was famous for his bravado expressed through poetry, as is evidenced in this excerpt before he won the historic “Rumble in the Jungle” with George Foreman in Kinshasha, Zaire in 1974:

I’ve wrassled with alligators,

I’ve tussled with a whale.

I’ve handcuffed lightning,

And put thunder in jail.

You know I’m bad.

I have murdered a rock,

I injured a stone,

And I hospitalized a brick.

I’m so bad I make medicine sick.

For a video of Ali reciting this poem and other information see Muhammad Ali Biography

I have probably stated the obvious and you are saying, “so what, tell me something that is new.” While I have never been a big fan of boxing, the “sweet science” as it is called, it does seem to form part of the weft in the tapestry that is my life. This may seem inconsequential and maybe random, but I am not a believer in life being purely random. In previous posts I have talked about my life’s trajectory and whether I have had a conscious role in determining that path. The answer is “yes” sometimes and “no” other times, and I am often hard pressed to pin point the exact moment or moments when I have nudged the trajectory in either a positive or negative direction. So what the heck is it about boxing, a sport about which I profess no great understanding and certainly no skill, that is so important?

Perhaps the most simplistic and obvious point is that I share at least one common life experience with Muhammad Ali. We both have Parkinson’s disease. Ali, diagnosed with Parkinson’s in 1984 or thereabouts (diagnoses of Parkinson’s are notoriously difficult to pin down to an exact date) is 73 years old. I was diagnosed with Parkinson’s three years ago and I am turning 66 this year. As I reflect on the many, many developments and changes in my body, brain, muscles, nerves, tendons, and psyche, I cannot fathom the sheer enormity of strength and determination of Ali’s body, mind and spirit upon which he must call to sustain himself in this bout with a seemingly never ending number of rounds. In many respects, it is nightmarish. In other respects, it is simply the highest testament that can be given to a man who knows, to the end, that his bravado, his showmanship, his celebrity, his strength, his deft footwork and stinging jabs, provide each of us with the determination to continue our own personal battle with Parkinson’s.

Boxing: The Big Boys

When I was growing up in southern Manitoba boxing was not a common sport among children. Parents of the day looked down on it and my generation rushed to embrace peace, love and the “flower power” of the sixties. However, I do know there was an era in the 1920s, 1930s, and 1940s when boxing had a surge in popularity and matches were promoted in many smaller communities where combatants competed for prize money of $8 for the win. Hardly stratospheric amounts of money – certainly not enough to attract most young men to get into the ring with someone who was determined to knock you out, or at least give you a good whuppin’.

One of my grandfather Bill’s workmates was a man named “Joe.” He had that distinctive broken nose face of a boxer. He was a rugged looking man who always treated me kindly, and who always appeared to be in great physical shape. I know that he fought on many boxing cards around southern Manitoba for little money. By the time I was growing up these boxing events had largely disappeared in rural communities but still continued in the larger centres such as Winnipeg and Brandon.

There is no question that my perception of boxing was forever altered on February 21, 1972 when a friend and I took in a card of four bouts at the Winnipeg Arena. Such a large venue was unusual but it was billed as the beginning of a new era of boxing in Winnipeg. The Canadian Light Heavyweight Championship was on the line in a bout featuring defending champion, Al Sparks, favourite and hometown hero, and the challenger, Toronto fighter Stewart Gray. Little did we know that this evening was to be both an evening to remember and one to forget. It unfolded this way:

In the first preliminary bout Jesse Fagin knocks out Muhamed Kamerick in the second round of a scheduled four rounder. This is Kamerick’s first and only fight … ever. He retires a perfect 1 – 0 – 0. I recall he was introduced as a former heavyweight champion from the Ukraine currently residing in Saskatchewan. In my brief search for biographical information on Kamerick, I was able to corroborate his unbeaten status and determine that he was not from Saskatchewan but from Winnipeg – age unknown, weight unknown, along with a host of other unknowns.

WAPC56

Winnipeg Arena circa 1972 Photo: From Ice Hockey Wiki

Kamerick looked decidedly out of shape and decidedly out of place – as if he had not seen the inside of a boxing gym or any other kind of gym for quite some time … if ever. His boxing acumen and skills were either very rusty or nonexistent. I rather think that it was the latter. His opponent, Jesse Fagin on the other hand, looked trim and fit and danced rings around Kamerick in the first round landing a few good punches, seemingly at will. Kamerick rarely connected, if at all. Thirty seconds into the second round Kamerick threw a wild roundhouse left hook, which might have appeared to connect with Fagin to fans somewhere in the Winnipeg arena but not from where I was sitting. Fagin went flying backward, arms out as if hit by a Ukrainian thunderbolt, landed on the canvas and was counted out by the referee.

The oddity about Jesse Fagin (5 – 3 – 0 before entering the ring with Kamerick) was that this was his first fight in ten years. His last bout was December 11, 1963 in Weirton, West Virginia where Bobby (Sweet Boy) Warthen (lifetime14 – 18 – 0) knocked him out in the third round of a scheduled eight rounder. And, not surprisingly, his last fight before that was five years earlier (November 1958) when unknown Alex Walker (lifetime 2-0-2) stopped him on a TKO in the first round. Even though Fagin did not have much of a boxing pedigree, it was a more believable pedigree than Kamerick’s, but just marginally so. This night at the fights did not have a very auspicious beginning as they say.

Surely, it would get better.

In the second bout, Nafiz Ahmed (a heavyweight) knocked out Sammy Poe (a middleweight) in the second round of a scheduled four rounder. Ahmed is listed in Boxing Records as hailing from Vancouver, B.C. with a lifetime record of 4 – 4 – 0. Is it coincidence that this would be Ahmed’s last ever bout and, at 41 years old, this would be Poe’s final professional fight? He would end his career with a dismal record of 2 – 5 – 1. Interestingly, Poe’s last fight before facing Ahmed was almost 10 years earlier when he lost on points to Jim Christopher on March 7, 1963. By the way, this is the same Jim Christopher scheduled to face George Chuvalo in the third bout of this Winnipeg card. As you may sense, the coincidences are becoming too frequent to be coincidental.

I recall that the crowd reacted with derision when Poe hit the canvas. It looked like he went down awfully easily. To tell the truth, it looked like he stayed down because he really was not all that interested in getting up. I am not convinced that the blow that felled Poe was a connecting blow. You might venture to say that he was blown over by the wind as the punch sailed by him, but that punch was never traveling fast enough to generate as much as a puff of breeze.

This brings us to the third bout of the evening – one to which we were quite looking forward. Living Canadian boxing legend and icon George Chuvalo would be fighting Jim Christopher. The recorded facts of the fight are that Chuvalo knocked out Christopher in the second round of a scheduled 10 rounder.

However, of much more interest is the back-story, the sidebar story, the behind the scenes story, the under the table story, or whatever this sordid story should be called. This would also be Jim Christopher’s final professional fight and he would retire with a lifetime record of 6 – 23 – 3, hardly an impressive career. Christopher had last fought on December 4, 1969 (over three years earlier) when he lost a unanimous decision to Bill Drover, a respectable fighter from Newfoundland and Labrador in Halifax, Nova Scotia. For whatever reason, Christopher was drawn back into the ring to fight the hard-hitting Chuvalo on February 21, 1972.

Our seats were near an entrance leading to the ring from underneath the stands. We were within earshot of the referees as they left the ring to return to the referees’ dressing room. And boy did we ever let the referee from each of the first two bouts know what we thought – that the whole affair was rigged; that we were cheated out of our money; and that we were disgusted with the way the fights had ended. I knew one of the referees from my hockey playing days where he had been a trainer, and I clearly recall shouting that I thought he was a sellout and that we expected better.

And we were confident that the better was going to start with this third fight – Chuvalo vs Christopher. From the instant that Chuvalo stepped through the ropes and into the ring, we knew we were witnessing one of the true great Canadian fighters. Oh, we also knew that Chuvalo was nearing the end of his great career and that his best days were behind him, but his punches were sharp and crisp, not lazy and round, and sizzled through the air ending with a sharp smack as they connected with their target. I recall trying to imagine what it must be like to be on the receiving end of those sledgehammer body blows for which Chuvalo was famous. It hurts to even think about it.

This fight with Christopher was to be Chuvalo’s tune up for a May 1, 1972 rematch fight with Muhammad Ali in Vancouver, B.C. (For the record, Chuvalo would lose that rematch with Ali in a unanimous decision in 12 rounds.) But back to the Christopher fight. Some tune up. A few days later Christopher would publicly admit to throwing the fight in the second round claiming he had received a threat prior to the start of the fight. As far as I know, Chuvalo had no knowledge of this situation and was as surprised as the rest of us when Christopher lay down in the second. I have no reason to doubt Chuvalo – he was never going to be tested by a fighter of Christopher’s calibre. Still, it looked and felt unsavoury and dishonest, reeking of corruption, especially in light of the two previous bouts. And in retrospect, it still stinks.

Is it oddly coincidental that of the six fighters in the first three bouts, five of them would never fight again? On the basis of their demonstrated talents and boxing skills, the same five should not have even been in the ring on this particular night.

George Chuvalo’s career is legendary in Canada and we bought tickets partly because this would likely be our only opportunity to see him fight in person. He fought World Heavyweight Champion Muhammad Ali for the title in March 1969. It was a fight that Ali was supposed to win, and he did with a unanimous decision after 15 rounds. Although Ali did outbox Chuvalo in almost every round, Ali never really stunned him. It was in this fight that Chuvalo, a boxer who was never dropped to the canvas in his professional career, solidified his reputation as a boxer who never stopped moving in on an opponent no matter how hard or how fast his opponent’s punches battered his usually puffy and often cut eyebrows and cheeks. In the March 1969 fight, Chuvalo moved like a slowly advancing tank to pound away on Ali’s body with heavy blows. But just as Chuvalo never flinched from Ali’s jabs or left-right combinations, Ali never showed as much as a grimace in acknowledgement that Chuvalo’s strategy was having any effect. Each combatant put on a clinic, highlighting two boxing styles that stood in sharp contrast to each other.

In the end, Ali’s superior boxing style and quick hands were too much for Chuvalo’s grittiness. To his credit, Chuvalo did make attempts in almost every round to mix up his barrage of body punches with some well timed combinations or left jabs to Ali’s head. Chuvalo’s hometown Toronto crowd roared each time in anticipation that their boy would connect and send Ali to the canvas. But Ali was too quick and escaped the barrage, dancing away, or recovered with well-placed jabs, hooks and crosses forcing Chuvalo to give ground. Ali danced and circled for 15 rounds and Chuvalo was not going to catch him this night.

Both fighters weighed in over their ideal fighting weights with Ali at 214.5 pounds and Chuvalo at 216 pounds. Announcers, Al McCann and football star Jim Brown wondered out loud if the stamina of each fighter would be negatively affected by the additional poundage. Each fighter stayed true to his game plan. Ali Danced and weaved. Chuvalo kept going straight ahead, looking to do damage to Ali on the inside. Neither seemed particularly bothered by the extra weight or the length of the fight.

The final scoring had Ali well ahead on points winning all but one or two rounds. In each round, just when Chuvalo seemed to be coming on strong, Ali would recover with a flurry of punches in the final 30 seconds as if to put an exclamation point on the round – emphasizing that the Champ was still in charge, was the aggressor and had won the round. In a few rounds, Ali did seem to toy with Chuvalo but it was not egregious unsportsmanlike behaviour, and certainly not out of character for Ali. Some accounts of the fight allege that the heavy pounding Ali took to the body left the Champ sore and urinating blood for days afterward. But at the conclusion of the fight, the Champ showed no evidence that Chuvalo’s blows hurt him much. It was only in later years that Ali would attest to the heaviness of Chuvalo’s punches.

Chuvalo fought all the best fighters of his time between 1956 and 1978 … and lost to all the best fighters of his time: Zora Folley, Floyd Patterson, Ernie Terrell, Muhammad Ali (2), Oscar Bonavena, Joe Frazier, Buster Mathis, George Foreman, and Jimmy Ellis. Chuvalo did have his share of wins finishing with a record of 73 wins, 18 losses and 2 draws. His biggest victories were knockouts over American Jerry Quarry and Canadian Yvon Durelle.

Yvon Durelle? Funny that his name should come up.   Let’s take a few minutes to talk about Yvon Durelle. Durelle was one of the great Canadian boxers with a lifetime record of 88 wins, 24 losses and 2 draws. Nicknamed ”the Fighting Fisherman” or more popularly “doux” which is French for “soft” or “gentle” by his Acadian friends, he was primarily a middleweight but often fought above his weight class in the light heavyweight and heavyweight divisions as he did when he fought George Chuvalo.

But it was Durelle’s light heavyweight championship fight against Archie Moore on December 10, 1958 in Montreal that really made history and solidified Durelle as one of the greats – even though he lost! He was an underdog going into the fight but he knocked the Champion, Moore, down three times in the first round. Current boxing rules would have ended the fight at that point and declared Durelle the winner. Durelle failed to go to a neutral corner after the first knockdown and lost valuable seconds before the count on Moore began. Moore struggled to his feet at the count of nine. Durelle knocked Moore down again in the fifth round but Moore held on, making one of the most incredible comebacks of all time, knocking Durelle out in the 11th round. Durelle lost but his gritty performance, and near victory, elevated him to near cult status in Canada.

I recall hearing a description of the fight. I am unsure as to whether I heard a live blow-by-blow broadcast or whether it was an abridged taped version. In any case, it was extremely thrilling and my nine-year-old sports brain soaked it up.

Years later, a documentary on Durelle’s life indicated that he owed thousands of dollars in back taxes, was almost penniless and running a bar in Baie-Ste-Anne, New Brunswick, where he was charged with murder after shooting a trouble-maker. Defended by Frank McKenna, a young lawyer who was to later become the Premier of New Brunswick, Durelle was found not guilty.  But clearly there was a lot of trouble in his life.

My father, who often times could be quite acerbic not to mention opinionated, remarked that this is what happens to boxers. They are exploited in a business where unsavoury characters manage your career, live off your prowess and bilk you of your prize money. He further opined that Durelle was “punch drunk,” and wandering the streets with diminished mental capacity. There is no question that Durelle took many hard right hands, left hooks and jabs to the head over the course of his career. And, undoubtedly, he fought in many unsanctioned matches not counted in his official professional record – perhaps twice as many. But I am not so sure he was “punch drunk.” He was diagnosed with Parkinson’s disease later in his life. But was it “caused” by boxing?

There is a condition called dementia pugilistica (DP), a variant of chronic traumatic encephalopathy (CTE) or chronic boxer’s encephalopathy, traumatic boxer’s encephalopathy, boxer’s dementia, chronic traumatic brain injury associated with boxing (CTBI-B), and punch drunk syndrome. In short, it is a neurodegenerative disease affecting boxers, wrestlers and other athletes who suffer concussions.

However, the literature is less than clear as to whether there is a direct relationship between DP/CTE and Parkinson’s. There certainly is considerable speculation that boxing is a “cause” of Parkinson’s (or Parkinsonism) given that boxers such as Ali and Durelle were afflicted with Parkinson’s. But I have seen no conclusive evidence that indicates that boxers are over-represented in the population of persons with Parkinson’s.

I had never heard that phrase, ”punch drunk,” before my father used it. It conjured up an image of a rough and tough looking boxer with that signature nose, broken one too many times, lurching uncontrollably through the streets. Today, I sometimes think of that image as I lurch through stores, along crowded sidewalks, through door jams, up and down stairs, past any and all obstacles in my way, with all the grace of a drunken hippopotamus. I have Parkinson’s disease. I am not “punch drunk.” At least I don’t think that I am.

But let’s return to February 21, 1972 at the Winnipeg Arena. The fourth and final bout of the evening was a scheduled 12 rounder for the Canadian light heavyweight title featuring reigning champion and hometown favourite, Al Sparks. Sparks finished his somewhat short career with a record of 23 – 13 – 1 but held the Canadian light heavyweight title several times and had contended for the British Commonwealth light heavyweight title in 1969 losing on points to Bob Dunlop of Australia in 15 rounds.

Sparks’ opponent is Stewart Gray, a mediocre fighter who finished with a lifetime record of 14 – 14 – 2. Gray’s main claim to fame was as older brother of Clyde Gray, a three-time contender for the world welterweight crown and holder of the Canadian and British Commonwealth welterweight titles at various times. Clyde’s lifetime record was a more than respectable 69 – 10 – 1.

Both Gray and Sparks approached this bout in workmanlike fashion but only Sparks was able to make good solid contact in the early rounds as Gray did not seem to be able to adapt to the southpaw’s style. It was clear that Sparks had done some damage in the sixth round and Gray’s corner, including his brother Clyde, worked feverishly to get Gray into shape to meet the bell in the seventh. Gray walked to the centre of the ring but just stood there with his hands hanging loosely at his sides. He looked confused. I remember the whole thing looked confusing and I didn’t know what I was witnessing exactly as it was so out of context. With the crowd screaming, Sparks approached Gray to engage but seemed puzzled when Gray did not appear to be willing to defend himself. Sparks backed off. The referee, Steven Trojack, made no motion to end the bout, so Sparks moved in with a left hook that put Gray to the canvas and down for the count. Officially, the bout goes into the record books as a knockout for Sparks 24 seconds into the seventh round.

Gray does not recover consciousness in the ring and is taken away by paramedics. Even though he does regain consciousness briefly in hospital, Stewart Gray undergoes emergency surgery and, tragically, dies from head injuries the following day, February 22, 1972.

There is an unproven assertion that Gray had suffered a head injury in a truck accident in advance of the fight and this may have contributed to his death. An investigation into the fight revealed that Gray had not undergone an electroencephalogram that may have detected such an injury and prevented Gray from fighting. But there was no requirement to do so.

What an evening of boxing! It was comedy, then farce, then tragedy.

The first two bouts appeared to have been fixed with knockouts executed in almost comedic fashion. Surely, even the most naïve of boxing fans could not be fooled by these antics. The third bout smelled pretty rotten as well but it was more difficult for fans to accept that there was any shadiness or underhandedness as it was the great George Chuvalo attacking an inferior opponent who had little chance of laying a finger on him. Still, the manner in which the conquered combatant, Jim Christopher, hit the floor strained one’s credulity. Later, Christopher alleged that he was approached by a stranger prior to the fight with a threat that led him to throw the fight with Chuvalo in the second round. There is no evidence that Chuvalo had any knowledge of this development.

Let’s recap. Amazingly, eight fighters went into the ring that night and only Chuvalo and Sparks emerged to ever fight again. Jesse Fagin, Muhamed Kamerick, Sammy Poe, Nafiz Ahmed and Jim Christopher ended their careers on February 21,1972 in the Winnipeg Arena under a shrouds of personal ignominy.  Stewart Gray was to die the following day, most likely as a result of injuries sustained in that fight. Al Sparks fought only three more times after the tragic Stewart Gray fight, losing two of them by split decision, before ending his 21 – year career (23 – 13 – 1) with a unanimous decision victory over mediocre George Jerome on November 4, 1977. George Chuvalo fought in only eight more bouts over the next six years, finishing with a TKO victory over the same mediocre George Jerome (13 – 15 – 2 lifetime) for the Canadian heavyweight title on December 11, 1978. Still, Chuvalo chalked up an impressive record of 73 – 18 – 2 over a 20-year career and a reputation as never having been knocked to the canvas even by some of the greatest fighters of his generation.

The Manitoba Boxing and Wrestling Commission issued suspensions to all participants on the card. However, the Commissioners all resigned when they were asked to lift the suspensions while the Manitoba government conducted a judicial inquiry. A new Commission was appointed and the suspensions were lifted on March 1, 1972 in time for Chuvalo to sign a contract to fight Muhammad Ali in the second of their two fights in May 1972.  However, Fagin, Kamerick, Poe and Christopher would all have their licenses suspended again after further investigation.

It is a very sad commentary indeed that the death of Stewart Gray provides me with the only evidence that this entire night of boxing was not fixed, rigged, contrived, stacked, set up, framed, thrown, or willfully predetermined to defraud boxing fans of not only their money but their faith that the “sweet science” would determine a victor based on skill, abilities, conditioning and mental as well as physical toughness. The best I can say is that the Sparks vs Gray fight was not fixed. It ended in death. I don’t believe either fighter would have agreed to that outcome.

Boxing: The Little Boys

Grain elevators are probably the most photographed and painted icons of the prairies. Each town, village and hamlet had at least two. The community where I grew up had three. Ogilvie’s was farthest west on the track and was the oldest. At the eastern end was the Federal Grain elevator. It was the newest of the three and I can remember it being built within my lifetime. In between stood the United Grain Growers, often called the “UGG” or more colloquially to us kids, the “United Grain Grabbers.” These elevators had to be maintained and periodically crews would be sent to carry out necessary repairs and paint maintenance.

When I was about 9 or 10 years old, I recall a crew of young men arriving in town to carry out repairs at Ogilvie’s. They most often checked into the local hotel but on this occasion the crew bunked into the office of the elevator for their short stay. As usual, we children were nosing around to see if we could find any interesting “distraction” from the boredom of small town life. For example, on another occasion when the “new” highway was being built, we would go out to the worksite where the Euclid earthmover operators would allow us to sit in a makeshift seat behind their chairs and we would bask in dust and diesel fumes while they scraped the earth from fields and ditches and deposited it to make the road bed. I am certain that our parents were none too pleased and it contravened every health and safety code I am sure, but we loved to do these things and, as children, we really didn’t know better. What an education I had as a child! And, I hasten to add; we were fortunate that no one was hurt!

I am not sure what we expected when we approached the elevator crew at Ogilvie’s early that summer evening. The men on the crew were young, physically fit and had energy to engage in sports after their workday was done. One young lad had two pairs of boxing gloves. I don’t remember what weight or brand they were but they seemed huge, bulky and strange, rendering our thumbs immobile. I was not the youngest present but I was not the oldest either. One of the crew suggested that we should go a few rounds with gloves on, for fun.

Gloves from 1950s

Gloves from 1950s

We were paired up roughly according to age and size. I was fairly tall and big for my age so I was paired against a boy who was not only older but who was more muscular from working on his parent’s farm. I confess that I was a little flabby, being a town kid and all. The younger boys were anxious to try out the gloves and they were slotted into hastily constructed preliminary bouts. They were, however, long on enthusiasm and short on boxing technique, prowess and style. They came together in the middle of the office floor (all desks and chairs had been pushed to the sides) and immediately began wind milling wildly, whaling on each other with such a flurry and fury that it bore no resemblance to the “sweet science“ of boxing. It was more akin to setting two demented monkeys loose to scream and fight for the last banana. Each match was over within seconds as the victor overpowered the loser through the sheer volume of wildly directed blows landing anywhere and everywhere.

When it came time for the featured main event, me against Ron, both anticipation and expectation ran high that this fight would be worth the price of admission which in this case was … well … nothing … but pride and natural male competitiveness do carry some value. There was no question that each of us would give it our best shot to win. One of the crew members became my handler and worked to lace my hands into the gloves in my “corner” on the far side of the door – giving me advice on boxing technique and strategy as he did so. One of the other young lads was doing the same for Ron in his ”corner” over near the far end of the windows. Each of us had seen some boxing on TV (actually on Orville’s TV as he had the only TV in the community) so we had some notion of the basic premise. The third member of the crew was the official judge and referee.

Gloves laced up and wiped clean, we danced in our corners as introductions were made. I was “Big Red” and Ron was “The Fighting Farmer.” We came together with the referee in the centre of the ring, received official instructions, touched gloves and the fight was on! In the first round we circled each other cautiously, tendering exploratory jabs along with a phantom feint or two. One of the crewmembers commented, “Now this is more like it” giving each of us a little more incentive to deliver a good fight. Neither of us landed any blows that were clear hits and the opening round likely would have been scored as even.

"Big Red" in front of potential venue for elevator match    Photo: unknown

“Big Red” age 2, in front of potential venue for elevator match              Photo: unknown

The second round began with each of us being a little more aggressive. Neither of us had great technique but we were able to fend off some fairly dangerous right crosses and left hooks. I think Ron was a little more aggressive than I was in this round and a judge likely would have scored it in his favour. Surprisingly, we were each growing a little weary at this point as neither of us was used to dancing and moving for any extended period of time. It is beyond me how the early bare-knuckle boxers used to go 70 or 80 rounds before finally knocking out their opponent, or succumbing to his blows.

Round three of the scheduled three rounder began. I recall seeing the punch coming but I didn’t expect the end result as Ron hit me with a straight right hand squarely on the chin and sent me flying back towards the door where I stumbled on the doorstep and slipped to one knee. Immediately, the referee jumped in and the fight was over. Ron was declared the winner by TKO at about 20 seconds of the third round. I, of course, like every fighter who has been knocked off his feet, protested that I could go on, and firmly believe to this day, that had I been allowed to continue, I would have vanquished my opponent. Nevertheless, the referee called the fight and my lifetime boxing record was established at 0 – 1 – 0 albeit in a non-sanctioned bout. I was never to lace up the gloves again.

At the time, I took some solace in the fact that I did give a decent account of myself against an older boy who had a clear physical advantage. And, of course, I knew that most other great fighters had lost at least one fight in their careers. Only the great Rocky Marciano went undefeated in the heavyweight division – a perfect 49 – 0 – 0. And I knew I was not the only fighter in town to have a winless record.

As I indicated earlier, the generations prior to mine engaged more formally in boxing as a sport with organized cards for adult “professionals” and school age amateurs alike in many communities, large and small. Now, there were two old geezers in my town, neighbours, who didn’t particularly get along. Names and some details are disguised in this account as rivalries and feuds often remain long in the ground of small communities, like anthrax waiting to infect another generation. I don’t want to be responsible for precipitating a renewed outbreak of hostilities between the families and, more importantly, I don’t want to be caught in any crossfire or become a common enemy upon whom they turn new found wrath. So, let’s call them Y and Ynot.

Y has somewhat effete mannerisms and no one would ever label him as being a man’s man. He worked all his life in an office environment and puttered about his yard, gardening with a delicate touch. When he goes about his business he fusses around a lot before actually getting down to business. Y has a son named Y2 who fancies himself to be a bit of boxer – likely because other children his age are merciless in their teasing about his father. However, Y2 is a string bean and not a very good boxer and I don’t believe he ever recorded a single win.

Ynot is, on the other hand, a self-styled man’s man – a successful farmer who retired to town in order that his son Ynot2 could take over the farm operation. He purchased a lot close to Y and built a new house. Y was not very happy to have a new neighbour and took every opportunity to complain about Ynot’s house and property. There developed a kind of mean low level bickering feud between the two men.

My friends and I were often hired by Ynot to do yardwork or other odd jobs and on those occasions Ynot never missed an opportunity to badmouth Y or any member of Y’s family. In fact, Ynot often cast aspersions on Y’s manhood by saying such things as, “Y only has one ball, ya’ know” or “Y was hiding behind the door when God handed out balls and he only got a leftover deformed ball.” Ynot laughed at Y and made fun of everything that Y did, often mimicking his mannerisms such as the way that Y always dusted off his chair with his handkerchief and placed the hanky delicately upon the seat before sitting just as delicately upon it; or the way Y drove his car without ever looking to the left or the right, or even behind when he backed out of his drive. Admittedly, it was rather frightening to observe Y behind the wheel. In the winter, we children would “bumper shine” or hang onto the bumpers of cars and slide along the snow and ice packed streets, letting go only when the car attained a speed that was too fast for us, or when it turned a corner and we were thrown into the ditch by centrifugal force. This “sport” was decidedly unsafe and I discourage anyone from doing it today. In fact, it was doubly unsafe when Y was driving because the weight of two or three of us bumper shining would cause Y’s car to slow or perhaps spin its tires, stopped on the snow and ice. If the car were close to stopped, Y would quickly hit the clutch and pop the car into reverse, backing up in search of greater traction. I am not sure if Y knew we were hanging on to his bumper and he just didn’t care if he ran over us, or if he was oblivious to our game. All of this just reinforced our perception that Y was not all there and that Ynot’s assertions held some truth.

The boxing story, as I heard it, happened one day in a neighboring community where Y2 was one of the combatants on an organized card. Y decided to attend to cheer on his son. Y arrives at the venue, finds a seat and spends considerable time with his back to the ring, preparing and dusting off both his seat and adjacent seats and then draws a second handkerchief from under his hat to be placed such that his ever broadening derriere can descend upon it, protected from any dust or irritants. But before his backside hits the cloth, there is a great roar from the crowd almost simultaneously with a thudding sound from the ring behind him. Y turns to see Y2 laying flat on his back on the canvas, knocked out cold by his opponent. Y2’s boxing career is over and Y never does see him box. Ynot dines out on this story for years, satisfied that neither Y nor Y2 belong to his club of “real men”.

As I reflect upon this series of events, I am not convinced that men have advanced much past this infantile behaviour. For many years, I thought this story was funny. But throughout those years it was rolling around in my head in ephemeral form and it is now being committed to paper with words that ensure its survival over time, in a form that is not malleable or easily changeable – and now upon re-reading it, I think it is just a sad commentary on human social relations. … Or maybe it is a little bit funny?

Boxing and Parkinson’s

As I mentioned at the outset, the obvious connection between boxing and Parkinson’s disease is through Muhammad Ali. And we discovered that Yvon Durelle, thought to be “punch drunk,” was diagnosed with Parkinson’s before he passed away on January 6, 2007. If we dig further we find that others in the boxing community also had or have Parkinson’s disease. Frederick “Freddie” Roach is a boxing trainer and a former professional boxer. Diagnosed in 2010 he owns the Wild Card Boxing Club in Los Angeles where his client list includes Amir Khan, Manny Pacquiao, Mark Wahlberg, and Georges St. Pierre.

It is becoming more and more evident that exercise and physical fitness are incredibly important to those of us who have Parkinson’s. Living with Parkinson’s means training the body and mind to overcome the barriers that Parkinson’s presents. Strength, flexibility, balance, coordination, concentration, cognition and confidence are all necessary if we are to delay the progress of this disease that robs us of natural abilities we take for granted e.g., walking in a straight line without staggering or falling; turning over in bed (yes, believe it;) or being able to play a musical instrument or ride a bicycle even though you suffer from the stereotypical tremor that haunts most PwP.

It is likely that physical fitness and mental toughness have enabled Muhammad Ali to look Parkinson’s squarely in the eye for all these years. Boxing, ballet, dance of all types, Pilates, cycling, walking, swimming, physical fitness programs, physiotherapy, balance and strength programs, etc. combined with additional cognitive exercises have given many PwP a new lease on life. I personaly find the LSVT BIG program to my liking.  We train our bodies and our minds to develop new routines and neurological pathways, and reinforce old ones. So what if I have to relearn most of the choreography each time. It actually becomes easier to relearn it each time. So what if I will never be able to balance on one foot for 60 seconds without holding onto something. But I will, most likely, be able to recover if my balance does waver without falling completely over. So what if I quiver and shake when I am waiting to engage in an activity. Once the activity begins, I am engaged and the Parkinson’s slips to the background providing me with that much sought after feeling of freedom when one is in control of one’s own body. Will this last forever? Not likely. Parkinson’s is, in the end, a most cruel and unforgiving disease. But one thing I know for sure, I want that feeling of freedom and independence to last for as long as I can possibly make it last. And I want to enjoy the ride!

Boxing is one of those sports that keeps PwP moving physically and alert mentally. These folks will never enter a boxing ring to fight a round in earnest but they will find great psychological fulfillment and motivation in imagining that their punches are pummeling Parkinson’s into submission. “Punching Out Parkinson’s” is the rallying cry at Paulie Ayala’s boxing classes at a gym in Dallas-Fort Worth, Texas. Ayala, a former bantamweight and featherweight world champion, trains 50 PwP from six neurologists during three classes a day, twice a week. Similarly, the Cummings Centre in Montreal provides boxing instruction for PwP as do the PD Gladiators with retired boxer Paul Delgado near Sandy Springs, Georgia. Boxing clubs such as the Rock Steady Boxing Club (Fighting Back Against Parkinson’s) have sprung up across North America catering to both early onset and mature onset Parkinson’s clients.

I have never participated in any formal boxing lessons but I do know that when I take a turn at the speed bag at my physiotherapy clinic, it is great fun, a very vigorous workout, and is enormously cathartic. We need avenues to release the stress and frustrations of Parkinson’s and boxing fits that bill perfectly, and at the same time it enables our bodies and brains to maintain and regenerate neurological pathways.

In a previous post, “In the Parkinson’s Garden: Ali, Michael J. and Me” (see archives December 2013) I fantasize about what it would be like if Muhammad Ali and Michael J. Fox were to visit me in the garden. Ali, tall and imposing, would be bobbing and weaving between the Jerusalem Artichoke and Joe Pye Weed, occasionally resorting to rope-a-dope tactics along the fence line, the crowd roaring. Michael J. would be riffing on the guitar at the front of the border, crowd roaring.

Ali would be among the Artichokes and Joe Pye Weed at the back and Michael J among the Brown-eyed Susans at the front   Photo: S.Marshall

Ali would be among the Artichokes and Joe Pye Weed at the back and Michael J among the Brown-eyed Susans at the front                                                                   Photo: S.Marshall

Yes, these are fantasies and not hallucinations, and they are essential to my mental well being – every bit as much as hammering the heavy bag or matching the rhythm of the speed bag or bobbing and weaving like a butterfly in a valiant attempt to strike the fatal stinging blow to the greatest of our opponents, Parkinson’s disease.

So how do I conclude this meander through my memory banks? I will resist the temptation to reiterate the obvious connections between boxing and Parkinson’s. Instead, based on the facts inscribed on the pages above, and if we accept that life is marked by a certain amount of confusion and disorder infused with measures of comedy and tragedy rendering it close to farce at times, and if we accept that sometimes heroic physical and mental toughness is critical to life, what I want to say can be summed up as follows:

  • Life is often messy.
  • Boxing can be messy.
  • Gardens are never messy.
  • Parkinson’s disease is always messy.
  • Messiness can be obviated … mostly.

If you have made it this far, treat yourself – exercise your body and your mind. Fight messiness.