HEY! I CAN DANCE!?

HEY! I CAN DANCE!?

A strange thing happened to me on the way to dance class 

Once a week Anne and I meet other Persons with Parkinson’s (PwP or Parkies), their lovers, spouses, partners, and/or caregivers to take a dance class. It is one of those regular, don’t miss it, kind of dates – but nothing salacious; after all we do meet in the early afternoon.

Today, I am going to tell you a little about the relationship between Parkinson’s disease and dance, as well as a few of the challenges that I faced on my journey to the dance studio.

If you have been following the research literature and the popular news reports about Parkinson’s disease, you will know that dance and other forms of coordinated, patterned movement e.g., Tai Chi, boxing, etc. are touted as the way to delay and/or obviate many of the symptoms of this pernicious disease.

The School of Dance

The School of Dance under its Artistic Director, Merrilee Hodgins, has long been front and centre in taking dance to the community in Ottawa and environs with special “Outreach” programs e.g., for learners with Down’s syndrome and for seniors and others in continuing care settings. It seemed to be a natural step for The School of Dance to expand this commitment to community by meeting the demand for dance classes for PwP. The School secured funding from the Ontario government to provide their “Connecting with Dance: Designed for People with Parkinson’s” program and at no charge to participants!

The School of Dance Parkinsons program Jan 2018Our dance instructor, Maria Shepertycki, has impressive credentials in the world of Ukrainian dancing as a teacher, performer, and administrator – she is co-director of the Ottawa School of Ukrainian Dance. Maria also has formal training in ballet, which she has coupled with introductory and advanced training in both Toronto and New York with the Mark Morris Dance Group and the Brooklyn Parkinson Group. Even better, Maria has formal university training in human kinetics and has worked extensively with PwP in both clinical and home settings utilizing a wide variety of both traditional and new therapies. It is wonderful to have a dance instructor with such knowledge, training, and experience in delivering therapies to PwP.

Musician Nenad Duplancic provides live music on the piano or keyboard in a valiant effort to ensure we Parkies don’t lose the beat. Anne has always emphasized the importance of live music as a tool the instructor and, by extension, PwP can use to refine our movements. The best part is that Nenaud makes our hour-long session more enjoyable with his on-the-spot changes to the beat and melodies, assisting us to dance our best. The time flies by.

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Nenad Duplancic at Keyboard, Marie Shepertycki kneeling at his left, and the troupe practising with scarves (The School of Dance).  Photo: S. Marshall 2017

Connecting Dance and Parkinson’s

The truth of the matter is that I must dance because I have Parkinson’s disease (PD). No, PD itself does not transform me miraculously into a dancer or motivate me to dance, even though that may appear to be the case as I weave and bob and sway, my body responding either to the tremour and involuntary muscle movements that provide the most common stereotypical characteristic of the disease, or the dyskinesia of the side effects of my medication, or both.

You may get the impression that dance is a relatively new alternative to traditional exercises or therapies for Parkinson’s but it was being studied and implemented at least a decade ago and the movement (no pun intended) has been growing ever since.

Research indicates that dance is beneficial as a therapy for Parkinson’s and there are many dance programs pioneering this strategy in their own parts of the planet. I am not going to attempt to reference all programs but certainly special mention should go to the Mark Morris Dance Group Dance for their PD® program in New York and Dancing with Parkinson’s http://www.dancingwithparkinsons.com lead by Sarah Robichaud in Toronto. Canada’s National Ballet School (NBS) has developed a program for PD called “Sharing Dance”. Working with researchers from York and Ryerson Universities, the NBS program is part of a study of how dance affects the brain in those who have Parkinson’s. In the UK the “Dance for Parkinson’s Project” led by Dr. Sara Huston and Ashley McGill at The University of Roehampton

… investigates the experience of dancing with Parkinson’s: how people engage socially and artistically, how dance may affect functional mobility, how experiences of dancing may affect everyday lives, what motivates people to dance and keep dancing.   Commissioned by English National Ballet  English National Ballet in 2010, the study (2010-2011 and 2011-2014) has tracked the company’s Dance for Parkinson’s programme in London, and its regional classes in Oxford and Liverpool. The research is unique in using a broad array of research methods to examine dance for people with this degenerative neurological condition.

Through the use of participant observation, one-on-one multiple interviews, focus groups, participant diaries and film footage, we have been investigating over a four-year period how the dance program affects people socially, within their everyday lives, what motivates them to dance and keep dancing and how participants engage artistically and technically with movement.

The evidence to date shows that if a Person with Parkinson’s (PwP) dances, s/he can alleviate some symptoms, live with them more effectively, and improve quality of life. In short, dancing is good for PwP. More specifically, dancing improves gait, balance, coordination, flexibility, and may assist in overcoming some persistent problems for PwP e.g., freezing. Dance improves cognitive performance through learning the patterns of the steps and movements as well as keeping time to the music.

Dance helps us meet the challenge of cognitive impairment head on (so to speak) as well. All of us in the baby boom generation are rightfully concerned about cognitive performance as we age, but Parkies are particularly mindful, as we don’t wear cognitive impairment as well as those who can claim a little “forgetfulness” from old age.

There is more and more research and evidence that there is “brain plasticity” or “neuroplasticity” i.e., the brain has the ability to recover after being damaged. In the case of Parkinson’s that damage is done when the dopamine producing neurons in the substantia nigra area of the brain die. What causes them to die? We do not know but it is likely that over 70% of those neurons in my substantia nigra were dead by the time I was diagnosed. The death of these neurons plays havoc with our neuropathways, the chain of neurons transmitting signals to and from the brain, such that even simple movements that most people do without thinking e.g., walking, get screwed up. Parkies are very familiar with the “Parkie shuffle” that is symptomatic of Parkinson’s.

It is important to remember that if the brain is plastic we can work to regenerate some of those pathways. Learning new dance steps and keeping time to the music not only strengthens existing neuropathways but develops new neuropathways as well.

Do Parkies Dance to the Beat of a Different Drum?

What makes PwP unique as dancers is that we each have very different abilities and are at different stages of advancement in the course of the disease itself. Even though the movements of the dance are patterned and choreographed by our instructor for our class, and we execute them in common, PwP cannot help but overlay shuffles, shakes, and sways peculiar to the inner rhythms (or arrhythmia) of each individual dancer. Only a Parkie or someone very close to a Parkie can truly appreciate that the related muscle movement disorders sometimes are out of body experience. This uniqueness does not mean that we should just go with our own movements. To the contrary, we dance to overcome those Parkinson’s signals and involuntary muscle movements; to develop a dancer who is precise, purposive and purposeful, in time with the music and faithful to the choreography.

Parkinson’s may want us to dance to the beat of a different drum but that dance provides us with false hope and then, no hope. Maybe it is ironic that Linda Ronstadt and the Stone Poneys had a big hit with “Different Drum” in 1967 as Ronstadt was subsequently diagnosed with Parkinson’s in 2013. She had retired from performing in 2009. I know the song is not about Parkinson’s but the line that sticks with me is “we’ll both live a lot longer if you live without me.” I dance to shed the cloying, clinging Parkinson lover who refuses to release me.

Parkies really are social people, you know; It just doesn’t seem like it some times

One of the symptoms of Parkinson’s is slowness in the facial muscles resulting in delayed facial expressions such as smiles or frowns. They may also look off into the distance or not blink for long periods of time. This makes PwP seem aloof or perhaps “not all with it”. As Parkinson’s advances, we may develop a “mask” where the muscles in the face no longer work properly such that your face does not reveal any expression or emotion. So, if you tell a really great joke to a Parkie who has this symptom, it will not be evident that they have understood the joke or find it funny. It is disconcerting at first because in everyday social interaction we rely extensively on facial expression for feedback and cues for further interaction. Until people understand this condition they may think you are a “stick in the mud”, unsociable, or simply don’t like them. It is a pain in the ass, to say the least, to be constantly apologizing or explaining.

When you have Parkinson’s, you tend to carefully pick and choose your times and occasions to socialize. I know that I am reluctant to make a commitment to go to dinner, see a ballet, visit with friends or any number of things only to find that Parkinson’s has changed its schedule and I am hit with a full blown case of Parkie with uncontrollable involuntary muscle movements, tremor, Bradykinesia (slowness), rigidity, or even difficulty speaking or swallowing, or any number of other motor and non-motor symptoms. Sometimes the medication kicks in and sometimes it doesn’t. I like to say that Parkinson’s is predictably unpredictable on occasion. Nevertheless, it is not completely random either and I have begun to understand how to make adaptations, accommodations, and compromises.

Once Parkinson’s has advanced to a point where you can no longer hide its symptoms, you begin to curb the number and types of social activities where you meet people other than family. Why? Let me list some of the reasons:

  • Whether we like it or not there is a certain stigma to Parkinson’s and when people are told you have this disease, they often assume that you have cognitive impairment or even dementia.
  • Dementia is associated with Parkinson’s but it is not the norm. Estimates are that 24% to 31% of PwP have dementia and 3% to 4% of all dementia in the population is due to PD. The prevalence of Parkinson’s related dementia in the general population aged 65 and over is 0.2% to 0.5%.
  • Parkinson’s changes everything and you no longer have complete control of motor and non- motor functions. You sense that everyone is aware of these changes and you are embarrassed by the fact that you are not the same person you used to be. Of almost equal weight is your perception that you embarrass others.
  • Parkinson’s may cause you to walk or move in a manner that leads people to think you are drunk. This can result in less than satisfactory interaction with those around you at a social event where not everyone knows you personally.

As Parkinson’s advances I look for “safe places” to do whatever I have to do. I do not like to disrupt or disturb others and I don’t want to be constantly defending or explaining my behaviour nor apologizing for it. Of course, such “carefulness” results in a tendency to isolate oneself from your community. The more you do that the more likely it is you will succumb to depression. Approximately 30% of PwP do develop feelings of apathy, which can be a symptom of depression. We need to get out more, not less, but so many things seem to conspire against us that the goal is elusive some times.

Rarely do PwP gather with other PwP. We do have support groups for PwP and our significant others, organized by Parkinson Canada each month. They serve as places where we can obtain information from experts and learn from each other. But we need more than these occasions.

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Marie Shepertycki (left) and Connecting with Dance Designed for Persons with Parkinson’s class (The School of Dance) 2017

Dance class is a safe place

Dance class designed for People with Parkinson’s is another of those “safe places”, this time meeting with other PwP in a setting that is not so focussed on the detail of the disease. The objective is to learn the moves and choreography, and integrate the beat and the music into our movements such that new neuropathways are developed, existing neuropathways are strengthened, and lost neuropathways are recovered. And we can do all of this without ever knowing, or needing to know, what the heck a neuropathway is. Dance class is dance class and because we are in a safe mental and physical environment with other Parkies, we don’t have to apologize for the way we move, how we look, or how we feel. Feelings of guilt seldom come into play, as it is a safe place for our lovers, spouses, partners, and caregivers to express their particular ‘dance’.

Dance class can be more … and will be more

The dance date I have each week with Anne is partly a social affair. We have fun. We meet new people and form new friends. We connect with some others we have known for a while, get to appreciate their talents and to know them and their families better. The School of Dance program includes time at the end of class which allows us to share ideas about Parkinson’s therapies, recommend neurologists, physiotherapists and other professionals and catch up on what is happening in the community.

For me, dance class is therapy for Parkinson’s and assists me to meet the challenges Parkinson’s presents each and every day. The world of dance, with which Anne identifies, knows class as fundamental practice and instruction on an ongoing basis. As such, maintaining, honing, and fulfilling “the dancer” within is the motivation to attend, and class becomes part of daily routine. These two approaches to “ class” are not far apart.

In fact, what we are doing in Parkie dance is to practice the basic movements (the syllabus.) It is here that smart instructors like Maria sneak in some movements from ground breaking therapies such as LSVT Big. Then we learn and perfect a set pattern of steps over the weeks. This approach is much the same as it is in performance dance – fairly far removed from those hoe downs in the hayloft on Saturday night – but we are not planning a performance. Thank goodness.

Tango Argentina

While it is true we will never perform the Tango like these professionals in Buenos Aires, Argentina, Nenad does play tango music and Maria incorporates a few moves into our choreography.  Photo: S. Marshall 2004

Back Story: I was a sk8ter boy: she did ballet (with apologies to Avril Lavigne)  

Journalists often talk about “the back story”, the historical context that gives rise to the feature story on which they are reporting. In this case, the back-story could be simply the fact that I have Parkinson’s disease and likely had it for some 10 years before my diagnosis 5 years ago. Parkinson’s is one of those diseases that gets progressively worse as time passes until it jumps up and demands to be recognized for what it is: an unforgiving, soul sucking disease. Well, I could go on and probably will in a later post and while there are many back-stories to this feature on dance and Parkinson’s, I will detail just this one very important story for me.

Perception of self is forged at a very early age and shaped mostly by family, teachers, and our play friends. What you need to know for today’s story is that my perception of self going back to my most early memories is that I am uncoordinated, born without rhythm and therefore can’t dance. For the past 60 plus years I have gone through life believing that I [choose one]: a) Cannot dance; b) Do not dance; c) Will not dance; d) Should not dance; e) Must not dance; or f) All of the above.

For all these years I believed that the correct answer is “all of the above”.

This view was reinforced at every turn throughout my life even though I was coordinated enough to be a pretty decent hockey player and good at most sports requiring foot work and good hand – eye coordination. I was an ice hockey kid – I lived and died for hockey. I did manage to play at the Junior ‘A’ level but that is a story to be told another day. I was a superior skater playing defence with great north – south and east – west agility on both sides in combination with good stickhandling ability and an eye for the net. Still, dance did not rest easily in my body and rested even less easily in my brain. In fact, I was (and remain) very inhibited about dancing to say the least.

Early in my life I accepted the fact that somehow musicality, beat, and rhythm had not found a receptive home in my soul. Its absence manifest itself in a body that is too stiff and in a brain that is equally rigid, resistant and incapable of providing neurological guidance to my muscles such that I feel I do not move gracefully through space. Except when I was playing hockey – a game where my movements were embedded in existing neuropathways such that my muscles moved without forethought and new neuropathways could be learned in the matter milliseconds by a brain hungry to transpose received information into the neurological code necessary to execute specific muscle movements.

By the way, I have met many other people (mostly men) of my age who were subject to this same criticism resulting in an ongoing reticence to dance, no matter what the occasion. Of course, the way out of this particular problem was to excel at something that required elements of those very characteristics that made one shine on the dance floor e.g., sports. Sports were a kind of ‘get out of dance free card’. If you were good at sports, it was OK that you couldn’t or didn’t dance. You would always be respected (by men mostly) as having the talent and skills to be an athlete of some repute.

Anne’s definition of a ‘dancer’ is someone who is able to move through space (on the ground or in the air) to music in a manner that defies true description and has the audience holding their breath or uttering spontaneous epithets of disbelief i.e., true dancers move through space better than other people that dance, and all dancers move through space better than those of us who move as if we are dancing to the tune of the periodic table in chemistry.

Anne has always been a dancer. From the time we first met over 20 years ago she would do an allegro across the kitchen floor and pirouette in the hallway. I can assure you that this joyfulness had nothing to do with having met me; she just LOVES ballet in particular and most other dance styles in general. She was inculcated into that world at a very young age and continued to attend ballet or modern dance classes for most of her life. There were a few years off to attend to having children and for her body (knees and feet) to mend because her brain did not comprehend that her body could no longer take the rigours of four or more full out dance classes a week.

Anne is happiest when on the floor or at the barre, or in this day and age watching a particularly inspiring dance performance clip from the Internet on her iPad and all I hear is “… holy sh–“ when the performance or the performer truly astounds her. I was going to say that Anne is an “aficionado” of dance but that would be too soft as a descriptor. Anne is a strident and critical analyst when it comes to evaluation of choreography and the execution of both technical and artistic elements of a performance. She is a bit of a “fanatic” on these matters. During live performances she has been known to voice such excitement and approval softly but audibly and the surrounding patrons of the dance appear not to be offended, as I suspect they agree with her and are thinking “ I wish I had said that.”

Fortunately for me, the dance of life and love does not always have predictable choreography or outcomes and she chose to be with me even though my “dance rating” was a colossal “fail”.   Thankfully, she saw that I had other qualities and that I was capable of appreciating dance from angles to which I had never paid much attention previously.

Anne and I never expected that I would be diagnosed with Parkinson’s but that is what happened and … surprise, surprise, … the breaking news is that I can dance! And I must dance! The silver lining in the diagnosis is that we now spend some time in a dance class where I can appreciate the importance of developing the dancer within – something Anne has known all her life.

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Anne and Stan Marshall (aka The PD Gardener) Photo by Maria Shepertycki 2017

Isn’t it ironic, don’t you think? (With apologies to Alanis Morissette)

Is there a grand finale to this dance? I assume there is but I am quite uncertain as to the choreography. Parkinson’s disease can make my body dance independently of any commands sent by my conscious brain. Maria, our dance instructor, and Nenaud, our musician, along with Anne, my dance partner are doing their level best to coerce my brain and body to respond to an inner metronome cancelling out Parkinson muscle ‘mis-movements’, replacing them with a body and spirit that flows effortlessly through space. Still, I perceive that I don’t seem to have one miserable neuron in my body capable of consistently exciting muscles to dance in such reverie that it that can transport your mind to a unique place or state of being – but I am reminded often that “the benefit is in the work” so I just keep on dancing, my friend.

Finally I find it truly ironic that I now face my inhibitions about dancing and my inherent awkwardness by pursuing learned, patterned dance movements to obviate the involuntary dance forced upon me by my dopamine-deprived brain

Resources and References

Alanis Morisette, Ironic, 1996

https://www.youtube.com/watch?v=Jne9t8sHpUc

Avril Lavigne, Sk8ter Boi, 2002

https://www.youtube.com/watch?v=TIy3n2b7V9k

Dance for PD

http://markmorrisdancegroup.org/community/Dance-for-PD/Dance-for-PD

Dance for Parkinson’s Project

http://roehamptondance.com/parkinsons/

Dancing with Parkinson’s

http://www.dancingwithparkinsons.com

Earhart, G. M., “Dance as therapy for individuals with Parkinson disease,“ European Journal of Physical and Rehabilitation Medicine 2009 June; 45(2): 231-38

English National Ballet Dance for Parkinson’s

https://www.ballet.org.uk

Linda Ronstadt and the Stone Poneys, Different Drum, 1967

https://www.youtube.com/watch?v=TGZznJXY1Xc

National Ballet School

http://www.nbs-enb.ca/Sharing-Dance

Parkinson Canada

http://www.parkinson.ca

The School of Dance

http://www.theschoolofdance.ca

© Stan Marshall (The PD Gardener)

 

 

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Short, Pithy and/or Pissy Post No. 4: Which Underground?

Short, Pithy and/or Pissy Post No. 4: Which Underground?

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In winter the intersection of Empress Ave., Scoles Rd., Hwy 27 N and Heritage St. in Altamont, Manitoba is as bone-chillingly cold as the infamous corner of Portage and Main in Winnipeg – before they forced pedestrians underground to avoid frostbite and injury from the beastly wind howling through the city core. Just another example of how humans try to conquer Mother Nature… if the tax base will permit.

There will be no pedestrian underpass in Altamont because… well, because Altamont is an unincorporated community within the Rural Municipality of Lorne (population 3,041 according to the 2016 census.) Statistics Canada does not deign to recognize Altamont itself as having any official population. In fact, some bureaucrat had a delightful sense of irony when s/he classified Altamont (estimated 1910 population: 100 and 2016 population: 50) as a “Local Urban District.”

I doubt that the municipal councillor in Altamont has ever felt political pressure to dig an underpass to conquer the nasty north wind at any intersection. The suggestion just begs the question, “What if they built an underpass, and nobody came?”

But there is another reason there is no underpass.  The intersection is almost famous for its Time and Space Warp (see SPPP no. 2) and the Warp is largely ineffective when operated below ground. This shortcoming was driven home to me many years ago while having a beer with a retired farmer named “Abe” in the iconic Altamont Hotel. Abe told me that Mr. Somerville, the stationmaster after the Northern Pacific and Manitoba Railroad reached Altamont in 1899, was fond of saying, “You cain’t see nuthin’ if yer six foot under.” I have no reason to believe that someone named “Abe” would lie – especially about something so germane to life and death.

When you look at the roads of egress from Altamont, the future certainly seems bleak. However, the Warp uses highly sophisticated socio – cultural geographic modeling along with temporal/spatial analysis methodology to ascertain the influence (positive and negative) of Altamont on the success and failure rates of its emigrants by analyzing the future futures, the present futures and the past futures of literally hundreds of individuals who will pass, are passing and have passed through Altamont – stopping to live a year or two, or ten, or twenty – or a lifetime. You will find that the accomplishments of those women and men are impressive and lead to the four corners of the earth and beyond.

[In technical terms the sum of such individual interactions is the Cumulative Overall Influence (COI); the downstream impact on the outside world over future generations is the Impact on Outside World (IOW); therefore, COI + IOW = Magnitude of Influence (MOI.)]

At any given time the road out looks bleak but the potential for success is great.  If you remain, you risk clogging up a system that depends on people leaving. Perversely, the success of a small town depends on its failure to thrive – forcing out-migration, which ironically contributes to its Magnitude of Influence.

Under such imperatives some residents establish strong bonds with small towns; bonds which neither distance nor death can break.  If these allegiances prevailed, there would be a steady stream of souls returning “home” each and every day. In Mr. Bishop’s words,

“Altamont was my birthplace.

Altamont was my home until I was 28 years of age.

Altamont has always been my home even now when I have been away for 43 years.

The hill east of Altamont will be my final resting place. From here I will view in all directions the beauty of all the seasons and play and laugh with those of my friends that are with me.”  

~ Lisgar Bishop in Memories of Altamont, 1884 – 1984

As for me, my family home was in Altamont for close to 17 years. I was married there … for the first time. For the next 30 years I lived and worked far away; visited infrequently; became estranged socially, politically and ideologically from the town folk; children arrived; divorce; new marriage, new family; diagnosis of Parkinson’s. Altamont became a place I used to live … but a place to which I am still contributing to its Magnitude of Influence (MOI.)

While I admit I have a fascination with Altamont’s history and the stories of those who call it home, love and gardens are beckoning my soul to a place other than the Altamont Cemetery when the time comes.

Besides, “You cain’t see nuthin’ if yer six foot under.”

(743 words)

© Stan Marshall (The PD Gardener) 2017

Short, Pithy and/or Pissy Post #2: Song Titles

Short, Pithy and/or Pissy Post #2: Song Titles” is now available.

“My lover thinks I have been sitting around wasting time listening to music from the last 7 decades. … It all started with an innocent thought about the geo–cultural origins of song titles.” Read more at https://wordpress.com/page/thepdgardener.wordpress.com/10598

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Short, Pithy and/or Pissy Posts: A new feature

Short, Pithy and/or Pissy Posts is a new feature on this site devoted to well … “Short, Pithy and/or Pissy Posts” about Parkinson’s, gardening or anything really … but uncharacteristically for me, I have to say it in 750 words or less!  It is all explained in the first post which you can find here:  Short, Pithy, and/or Pissy Posts

Have a great weekend!

DIRECTIONS PART II: Stories of Halloween, outhouses, potatoes, pesticides, Parkinson’s and mea culpa

DIRECTIONS PART II: Stories of Halloween, outhouses, potatoes, pesticides, Parkinson’s and mea culpa

Prior to my last post, DIRECTIONS PART I: Stay werr you’re to, ‘til I comes werr you’re at, B’y!, which is the first in a planned series, it had been over four months between posts. My instinct, even though I wasn’t raised in a family with a strong religious tradition, is to confess my sins i.e., apologize for my tardiness and seek your forgiveness. However, as I was reflecting on what words would be suitably contrite, I realized that this same lax religious upbringing permits me to conclude not only that I have no obligation to confess but equally I have no reason to apologize. I have done nothing untoward. Rest assured that I say none of this out of any disrespect for you, dear reader.

In November 2016, I wrote a piece that is truthfully a “Last Post” in that it was my reportage on the Celebration of Life for John R. Mills, a man who warranted the many accolades that were thrown his way at the best wake I have ever attended.  I know that learned intellectuals and professionals studying death and dying within all types of societies have researched, interpreted, analyzed and written about the grieving process identifying its stages and concomitant behaviors of the mourners. For the last four months I have been trying to come to grips with the reality that the strikes of the hammer on the anvil were hailing the blacksmith and farrier, beloved by all, to come home.

John’s death affected me in ways that I did not anticipate. He and I shared some quite personal moments in the months (even years) before he left us – moments that gave me insights into his life and his person; moments that give me the strength to face my own future with Parkinson’s, a progressively degenerative neurological disease; moments that help me better understand my own person; and moments that bring calmness to my spiritual self. Most of those moments will remain private and confidential but there are one or two that I feel I can share.

Sometimes there is no ‘option’ in option

During the last months of John’s life, there were many decisions to be made, difficult decisions; decisions no man or woman should have to face. He had sage and respected advice from physicians, health professionals, family and friends so he did not face the decisions or their consequences alone. Still, the final burden was disproportionately his to bear.

What turbulence is created in your intellectual and spiritual self when too much ‘hard’ medical data competes unfairly with too little ‘real’ time?  Some are tempted to call this problem a “quandary,” a ”puzzle,” or a “dilemma” for which there is no correct answer. Others see it as a kind of cost – benefit analysis where the positives and negatives (upsides and downsides) are totaled and offset to inform the decision – making process. Characterizing the problem as having a binary answer (yes/no) disguises the fact that the options under consideration are most often ‘options’ in name only and each option could be equally unthinkable e.g., living longer with a medically assisted but vastly diminished quality of life or dying more immediately from the ravages of your disease on your body and mind.

Here lies W. C. Fields. I would rather be living in Philadelphia”

The language of “options” also implies that we have a say in the matter; that there is ‘free will’ and we can, not change the course of history but, choose the course of history. The heading above is the epitaph (several slightly different versions are often quoted) that W.C. Fields proposed for himself in an article in Vanity Fair (June 1925.) I guess if Fields had the final say he would be alive in Philadelphia rather than in a grave beneath a headstone in Glendale, California.  Wouldn’t we all?  More likely, he would still be in a grave but in Philadelphia rather than California.

I do not deny the existence of free will for many actions we take, or do not take, in the course of life, but does free will always exist for life and death actions/inactions? If free will does exist are we fortunate or are we fortunate if it doesn’t? If there is no higher power than you, then to whom are you accountable? What if you, as the highest power, do not wish to die but your body and spirit can no longer sustain life? What if, at the very end of life, at that moment when our Soul is to be released from its material casing, we have no choice? How does that happen; who makes that decision? What if we do not have a Soul? The list of questions is interminably long.

Living with the dying and dying with the living sucks, doesn’t it? Or does it suck only if dying has greater importance or gravitas than life? The problem is that ‘not dead’ means ‘alive’ and ‘not alive’ means ‘dead.’ In relational terms each condition should be equal; each dependent upon the other being not present. As I only know and experience “aliveness,” that is the only condition about which I can speak and it turns out that I don’t know very much about it at all.

On the positive side, I know nothing about “deadness” and I am not even certain I ever will. This is not to imply that I will live forever but that there may be no consciousness for me after death. It is all very confusing and is very much a “black hole” into which the secret code of life is absorbed after death, never to be relinquished. Perhaps, being prepared to live and to “not live” (rather than “to die”) is the best we can do.

“Tell me a story”

What could I possibly say to John that would be at all helpful? The mind often boggles at times like this but John took the lead and on two occasions he lifted one hand slightly off the hospital bed to signal that he wanted to “say” something and although he was unable to speak without great effort, he signaled that everyone except me should leave. The first time was very private and personal and shall remain that way. The second time he wanted me to tell him a story. I had been sending John copies of my blog for quite some time and I knew that the stories resonated with his own experiences and that he appreciated the humour and context. So I stood by John’s bedside and spun a few stories that had been tumbling around in my brain but hadn’t yet made it into written and more polished form. Today, you are privy (pun intended, you’ll see) to some elements of those stories in a more organized form.

Nothing says Halloween like outhouses … and a potato?

I knew that John would appreciate the particular time period within which the stories are set as well as the many threads within the stories themselves. For me though, the significance of the stories lay in the telling and in the non-verbal responses they drew from John. In those brief few moments, I was thrilled that I was able to remind him of what it is like to be an eight year old boy – a boy who plugged Bob Lang’s sump pump hose with a potato on Halloween night, causing a minor flood in his basement which thankfully was unfinished and unfurnished.

I am sure those of you with sump pumps would like to take that boy and wring his neck, as water in the basement is not what any homeowner wants and a plugged drain pipe could overheat the sump pump motor and blow a fuse or trip a breaker. (See note 2) I suppose it could also start a fire if there was no thermal relay switch. My recollection is that the potato plug in Bob Lang’s sump pump hose caused only minor flooding. I heard no talk of fire or other damage.

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Who plugged the sump pump hose with a potato anyway? Photo: S. Marshall 2017

It is well known that boys over the age of nine, teenagers and immature adults look forward to playing the “trick or treat” game on Halloween night. The idea is simple; if a residence or business did not give you a treat then they could expect a trick to be played on them. Sometimes the older tricksters did not even give the “treat” part a chance; they just went directly to the trick. Tricks came in a wide variety of forms: soaping windows was quick and easy to do but slow and labourious to remove; throwing hay or straw bales on a roof top required the strength of young men; anything that wasn’t tied down and was smaller than a car got moved; but the most common trick was to tip over the outhouse. Almost every house in Altamont had at least one outhouse; likely a “two-holer” but there are many with only one hole. I remember seeing a three-hole outhouse on my grandparents’ farm when I was a kid. I thought it was hilariously funny but you never know, perhaps the number of holes is determined by the size of family … or some other social or economic variable. I am sure someone has done an analysis and with power of Google I could find out but this not the time to wander too far from the subject matter.

Cottage outhouse

A “one-holer” outhouse was common for a residence  Photo: S. Marshall

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A typical outhouse for a business with separate entrances for “Men” and “Ladies”   Photo: S. Marshall

Humour and Horror in the ”honey pit”?

Halloween is not all Hollywood, horror movies and Freddie Krueger. The horror of the “honey pit” predates the Nightmare on Elm Street movies and seems to have persisted over time. One recurring story is that a specific someone e.g., Ed Bulmer, Oz Jackson or Bob Hetherington, was in his outhouse when it was tipped over on its front, blocking the door. These images produced roars of laughter at each telling. Whether it is true or not is hardly the point. Strangely, I do not recall any women being named as someone, pants down, struggling to get out of an outhouse lying on its door in front of its “honey pit.” In fact, there are very few visual sightings of women entering or leaving the outhouses at any time and certainly none at Halloween no matter how strong the call of nature might be.

Sometimes the perpetrators got their comeuppance and one or more of those (no names will be provided here) tipping the outhouse inadvertently found himself (it was always a male) in the “honey pit,” having slipped during the deed. Even though I had been present at a few tipping events when I was young, I never witnessed such misfortunes – and it certainly never happened to me!  Still, it could not have been that hard for someone to nose out the truth after you have fallen into a pit of human excrement and piss, but perhaps like a cat that failed in its leap onto a precarious perch, you just preen for a second or two after falling and walk away nonchalantly as if nothing happened.

It is a safe bet that at least once in the last 130 years someone in Altamont was in the outhouse when it was tipped over and at least once a trickster did fall into the pit after giving the outhouse that one last mighty shove to break the centre of gravity.

The origins of Halloween go back thousands of years and bear resemblance to traditions of the Celtic harvest festivals. Interestingly, in the 1880s and 1890s many Irish immigrants passed through the Ottawa Valley (Merrickville, Carp) and other parts of southern Ontario (Lucan) on their way to settle in southern Manitoba around Musselborough which was founded in 1884 and later renamed Altamont. Undoubtedly, their Irish humour was fertile ground for tricks at Halloween and they relished the opportunity to regale one another with tales of forays on this night when the authorities turned a blind eye to minor infractions. It is not hard to see how stories of falling into the “honey pit” or of being in the outhouse when it was tipped over on its door, the only exit being over or through the foul smelling and disgusting looking pit, would become standard fare whenever they gathered.

I tend to think there is a kernel of truth in most stories that persist over time and the rumours associated with outhouse tipping are no exception. As if to prove this very point, the following entry in the book of memories for the 100th anniversary of the founding of Altamont was written 33 years ago and speaks to the general nature of these outhouse capers at Halloween.

“Halloween was always an exciting time in Altamont, especially in the days before in-door plumbing. It could be a dangerous time too. You had to be careful where you walked. More than one in–a-hurry, prankster found himself the victim of a fate worse than death, having fallen into an uncovered toilet hole.”

“Those outhouses must have been built well to survive the annual “pushing over.” Sometimes they were hauled out into the road and used to block traffic.”

“The most famous back-house in Altamont was also the most fortified. In fact, it still exists today. Bob Lang secured his one-holer with barbed wire. Most years he was successful in keeping his out-house at home.”

“Just when the boys were making some progress in getting his toilet over, old Bob would come running from his house waving his hockey-stick cane in the air. Everyone would scatter only to try again later.” ~ Allan Dawson in Memories of Altamont, 1984 -1994, compiled by the Altamont Centennial Committee.

Yes, Mr. Dawson identifies the same Bob Lang I referenced earlier in the sump pump potato plug incident. Bob seemed to be a target for many on Halloween. Perhaps, it was the challenge of his fortified outhouse and, appropriately enough, the danger of being ‘slashed’ by that hockey stick cane.

Memories of Altamont 1884 -1984 cover

Fire??!!

John was a great fan of stories that had action and he loved it when the characters were hit quite literally over the head as part of the story line. It goes almost without saying that when I was fully engaged in the stories of the outhouse tipping shenanigans, John was more animated and his eyes were visible under their closed lids. I am not sure what he enjoyed the most: the idea of a general assault on outhouses at Halloween; the tipping and dragging of outhouses onto the street to block traffic; the possibility of someone actually being in the outhouse at the critical moment when its centre of gravity was breached; the irony of a perpetrator falling into a cesspool of piss and shit; or the idea, which I heard more than once during the outhouse raids, “Let’s set fire to the fucker.”

Fire was no stranger to Altamont and I am researching a number of fires over the 130 years of Altamont’s existence. As my research is incomplete at this stage I cannot delve into those events too deeply but let’s consider the following questions: What if the Halloween tricksters did set the outhouse on fire? What if the idea caught fire, so to speak? Would there be a conflagration of “shitters” the likes of which the world has never known? Not likely, but even though Altamont was small, setting fire to one or more outhouses in the community would make a statement far beyond the usual Halloween “pranks.” Flaming outhouses are sure to hit the news – even though cell phones were not yet in widespread existence and video of such events would be difficult to find. Rest assured the concept of mens rea would be applied and charges would be laid.

Environment, outhouses and Parkinson’s

In the 1950s and 1960s small villages and unincorporated Local Urban Districts (LUDs) such as Altamont did not have public utilities such as water and sewer. Only a few houses had septic fields and the “water utility” was an electric pump drawing water from a well on the property. But in truth most houses had no electric pump; no running water; no flush toilet; no septic field; and the waterworks was an old creaky hand pump drawing water from a well directly below.

Most people had outhouses where they went to “do their business” or “honey pits” into which they emptied a “honey bucket” from the house, a task I was given when I was about 8 years old, once a day, every day after my sisters had gone to bed. I can still recall the weight of the honey bucket in my hands, stink trailing behind me as I walked through the kitchen and back porch out into the back yard – the air fresh and clean until I passed through. The honey pit was located at the northwest corner of our lot beside our rhubarb and as far as possible from our well but still only a distance of 10 – 12 meters. Cleverly disguised as a squat wooden square box, the honey pit sat there innocuously and surprisingly stench free with a padlock securing the trap door entrance on its top. I always fumbled with the lock and opened it with trepidation as it was usually after dark and there were no lights in that corner of the yard. I don’t know, maybe I expected a monster with extremely foul breath and dripping with soggy toilet paper and excrement to jump out the moment I opened the hatch! I think dad must have tossed in copious amounts of lime to cut the smell and reduce fly and pathogen problems, as I was always surprised that the smell didn’t knock me over and there were few flies when I opened the door

Drinking water and water for bathing was drawn from wells that were dug only a few meters from the outhouses and honey pits. So how far should an outhouse be from a well? I thought this should be an easy question to answer. Turns out that it is not. At the one extreme, some municipalities in Canada prohibit outhouses outright. At the other extreme, unorganized townships have no restrictions or regulations whatsoever … build your outhouse wherever you want – and better yet, don’t tell anyone even if you do build one. It is the best thing about unorganized townships, ‘don’t cha know’ (facetiousness is dripping here). Other people argue that a “few feet” is OK as long as the pit is above the water table. I agree that deep wells accessing  underground aquifers far from the surface pits of outhouses would be quite safe.

Surely, the juxtaposition of drinking water sources and the storage and disposal of human waste does matter and close proximity does not make for a healthy environment. When I was first diagnosed with Parkinson’s disease, I wondered if sanitation issues and/or contaminated well water might be factors contributing to the development of Parkinson’s in an individual.

Well … what about the well?

The well in our house in Altamont was directly under the kitchen. It was a hole about five feet in diameter and about 15 feet deep. There was cribbing for the first five or six feet and the whole thing was covered by a large piece of 3/4 inch plywood forming a landing at the bottom of a set of stairs made from rough-hewn timber, leading to an unfinished basement. Occasionally my father would take the cover off to peer into the depths to determine the water table. About three feet to one side a separate hole about three feet deep housed an electric sump pump to keep the basement from flooding should the water table rise too high.

I have no idea how often a well should be cleaned if ever, or what should be used to clean it. I do recall one time my father cleaned our well. It happened one July when I was about 14 years old. It was a hot Saturday evening during haying season (it’s beginning to sound like a country and western song here) when I returned home from a long day of riding the hay rack behind a baler spitting out alfalfa bales in rapid succession. [Interestingly, the sway and rock of the hayrack across the field is not unlike the feeling that I currently experience with my Parkinson’s balance and peripheral neuropathy proprioception issues.]

I arrived home hot, sweaty and thirsty, thirsty, thirsty! I grabbed a tumbler out of the cupboard, went to our water pump in a small alcove just at the top of the stairs to the basement. I worked the pump handle up and down a few times to fill the tumbler with water that was not extremely cold but as cold as I was going to get. I tipped the tumbler up and let the water drain into my throat. About half way through the last gulp, a very big gulp I might add, I sensed that this glass of water was not all that it promised… or maybe it was more than it promised. I could feel something disturbing in my mouth. I suppressed the urge to swallow and I suppressed the urge to gag, although I don’t know how. Instead, I willed my self to spit the contents of my mouth out into the porcelain sink. A three to four inch long worm began wriggling across the slippery surface. I don’t know how I hadn’t spotted it before tipping the glass all the way to vertical but rest assured that I have pre-checked every glass of water I have ever had since then. It is something I will continue to do into the future. The worm in a glass of mezcal repels me and I can hardly look at it never mind have a sip!

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A word to the wise: always check the bottom half of your glass  Photo: S. Marshall

Of course, my mother was extremely distraught by my account of the worm in the drinking water. The very next day, dad and a neighbour took the cap off the well, pumped it dry and with a rope around his waist dad descended into the well with a brush and sponges. He scrubbed the walls and cleaned the intake on the pump. It seemed to make my mother much happier if nothing else.

I doubt that a worm or two in your well causes Parkinson’s but I do recall that dad was concerned about high levels of arsenic and other contaminants in well water in the area. Even so, I don’t remember our well water ever being tested although I do recall dinner table conversation that it should be. In the end analysis, I think we were too poor to pay the test fee plus the shipping cost to Winnipeg. Dad likely relied on the tests that others in the community had obtained as being indicative of the readings that our well would have. In any case, I don’t think the arsenic was much of a problem but I cannot say the same for the chemicals and/or metals the ground water may have contained, although studies are inconclusive as to the consequences.

We lived in an agricultural area and the 1940s, 1950s and 1960s were times of intensive usage of pesticides on farms, and I know that our father used these same practices in our gardens. (See Note 3.) As always there is considerable difficulty in obtaining reliable data for pesticide usage and funding for research on the health impact of pesticides on the population is relatively scarce. Still, since 2003 seven provinces including Manitoba have passed legislation banning the use of pesticides for cosmetic (non-essential) use. Saskatchewan, Alberta and British Columbia are the holdouts. The definition of “cosmetic use” ranges from use on lawns only to use in all elements of landscaping. Most provinces have some exceptions.

Those initiatives and laws are all well and good but the 60 years between 1940 and 2000 were pretty freewheeling when it comes to pesticide usage. The current legislative bans and regulations come far too late for those of us in our 50s and 60s who are just now being diagnosed with Parkinson’s as we could have been exposed to the pesticide as many as 50 years ago. Indeed, it is much more likely that we were impacted by pesticide use than by the proximity of outhouses and honey pits to well water.

There is also a possibility that some metals, oil and petroleum products seeped into the ground from nearby industry. Whether it (whatever “it” is) ever reached the water table in our case I cannot say as the details were buried forever when our house and the industrial buildings were torn down and the area redeveloped.  In other words, none of these possibilities can be verified, no conclusions can be drawn and all speculation will remain just that, speculation.

I suppose that every Person with Parkinson’s (PwP) has asked two questions: what causes Parkinson’s disease and why me? Do you know that this year, 2017, is the two hundred year anniversary of Dr. James Parkinson’s famous work, An Essay on the Shaking Palsy, which established the disease as a medical condition named after Dr. Parkinson. After 200 years of study the question as to what causes Parkinson’s has yet to be answered.  Scientists are coming ever closer as they research proteins such as alpha-synuclein that misfold and form Lewy bodies that are present in the brains of all those with Parkinson’s disease. Nevertheless there are gaps in the research indicating that perhaps they  are not isolating the precise genetic factor and protein or that the cause is more multifaceted than we care to believe e.g., other factors such as environmental exposures may be complicating or confounding features of the cause(s).

Is there a link between poor sanitation and Parkinson’s disease?

There are many references in the literature to the links between environmental factors and Parkinson’s disease. Could there be a link between poor sanitation and Parkinson’s disease?  I suppose that anything is possible given that a definitive cause of Parkinson’s has not been isolated, but it is not probable. I have not seen research reports showing a correlation between the presence of outhouses or “honey pits” and the incidence of Parkinson’s or other neurological diseases. I am certain that it is not desirable to have human waste “honey pits” in close proximity to wells providing drinking water as it increases the likelihood that insects can pass diseases back to the human population. Nevertheless, I don’t think such proximity was a contributor to my Parkinson’s.

Pesticides are a trigger

Researchers have long suspected a correlation between the incidence of Parkinson’s disease and the presence in the agricultural environment of pesticides. The authors of a newly released (April 2017) literature review and meta-analysis conclude

“ …there is now strong evidence that exposure to any pesticide involves a ≥50% increased risk for developing Parkinson’s disease.” (Gunnarsson and Bodin, 2017)

Let’s be clear though, most research and considered academic writing on this matter is careful to highlight that environmental exposure to these toxins is not sufficient in and of itself to develop Parkinson’s. In order to develop Parkinson’s a person must already possess a genetic marker for Parkinson’s that is then triggered by the environmental factor. Neither exposure to toxins nor possessing the genetic marker is sufficient to result in Parkinson’s but together they may result in Parkinson’s. Not very convincing is it? But, on the other hand it is encouraging that we at least have some leads.

“In conclusion, this meta-analysis provides evidence that pesticide exposure is significantly associated with the risk of PD and alterations in genes involved in PD pathogenesis.” – Ahmed, H. et al. in Biomed Pharmacother. 2017 Apr 13;90:638-649.

“As a neurogenetecist, I’m prejudiced to say that people have a certain proclivity that resides at the genetic level which predisposes them to environmental insults—whether they be pesticides, well water, living in rural areas, or trauma, possibly.” – Northwestern University neuroscientist Teepu Siddique as cited in The Atlantic, “The Brain of a Fighter” by James Hamblin, June 2016

There is also research, although not as strong as the chemical toxin research, that supports the conclusion that well water with high levels of iron, mercury, manganese, aluminum and other by-products of industry are linked to the increase in incidence of Parkinson’s disease. These metals leach into the water table or enter underground streams and aquifers to be drawn on through wells and consumed by the population as drinking water.

Summary offence (misdemeanor) or indictable offence (felony)?

Before I forget, we do need to return to the sump pump potato plug case to tie up a few loose ends. One of those loose ends is the question of whether the perpetrators of Halloween pranks were “mischievous” or “rotten to the core?” I prefer to think mischievous, as it was a different time then, a different morality. Pranks were expected on Halloween. Still, is a potato stuck in the sump pump hose a prank of a different order than an outhouse tipped or moved into the street to block traffic i.e., was the potato incident an “indictable offence” (felony) and the outhouse tipping a mere “summary offence (misdemeanour)?” I have bracketed the terms “felony” and “misdemeanour” even though those terms have been abolished in the Canadian legal system because they still evoke an intuitive understanding of the relative severity of the offence. I have my own view and when I asked John for his opinion his face brightened a little and I knew that he had experience on both sides of this question and there was a discussion to be had, if only he had the strength and ability to talk. I like to think that we wouldn’t be far apart in our interpretation.

Bob Lang's house front view 1982

Bob Lang’s house (front view) Photo: S. Marshall 1982

It seems that Bob Lang spoke to the parents of a different young boy (let’s call him “H”) accusing “H” (wrongly) of the prank. In keeping with their values of respect for elders and discipline for their children, the parents believed Bob and punished “H” accordingly despite his wailing and vigourous protestations that he was not guilty.

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Does this look like a kid who would plug your sump pump hose?

At this point I could tell by some slight movements of John’s mouth muscles and the gentle squeezes from his hand in mine that he could identify with the first young lad who was in truth guilty not only of the potato caper itself, but also guilty of not confessing to the deed (a mischievousness but cowardly act of omission) after his friend (“H”) was wrongly accused and subsequently punished. I knew that John empathized with “H” who was wrongly accused – although I know also that John would find the fact that the wrong boy was punished to be tremendously funny especially if he (John) was the true guilty party.

Bob Lang's house back view 1982

Bob Lang’s house (rear view) where the sump pump hose was located. Photo: S. Marshall 1982

Straw bales burn better than outhouses

To my knowledge no one ever acted on the suggestion to set fire to the outhouses in Altamont at Halloween. However, I do recall that a number of straw bales were set on fire about a half-mile south of the village. It is a strong memory for me, not because I actually saw the bales blazing, but because an RCMP Constable later interviewed me as to my whereabouts on Halloween and whether I could say for certainty that I was nowhere near the burning bales. I was sitting in the driver’s side backseat of the RCMP cruiser while the Constable sat in the passenger side front seat with his clipboard (no computers on those days.) We were well away from others and thankfully well away from my father and his failing hearing – hearing that could be cured with faith-healer-like speed if the conversation was interesting enough.

A second Constable was rounding up a few other local lads to be interviewed in the search for the straw bale pyromaniac. I had no problem in convincing the Constable I was not in the vicinity of the fire … as I was busy sticking a potato in Bob Lang’s sump pump hose. The Constable laughed and said he had no report on such an incident and that I shouldn’t do that sort of thing.  At that moment I knew the policing arm of the state, rightly or wrongly, ranked a potato in a sump pump hose at Halloween to be similar in severity to outhouses tipped on their sides, stinking up the neighbourhood. i.e., they were summary offences at worst and forgivable on Halloween with no charges laid. Fire and arson, on the other hand, were clearly matters of a higher order – indictable offences –  and the RCMP were looking to lay charges.

The Constable dismissed me from the cruiser and called the next kid in line to jump into the rear seat. As fate would have it the next kid was “H,” the very same kid who was punished by his parents for the Bob Lang sump pump hose potato plug caper even though he was innocent. It is a good thing that ”H” did not know who was actually guilty of “his” crime and it seems that the Constable never mentioned it to him.  Perhaps “H” has been searching for the real potato prankster for the past 60 years?

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This kid probably plugged the sump pump hose. He looks like a hood to me!

I never heard another word about the potato plug in the sump pump hose caper or the straw bales which “spontaneously combusted” in Fraser’s field. The petty pyromaniac pranksters (if alliteration for effect can be overdone, this is probably an example) were never found. If there are any outhouses remaining (and I believe there are many,) they continue to be “at risk” each Halloween. On the other hand, the risk of a potato in the sump pump hose attack is relatively low.

Is mischievousness only a children’s thing?

On Halloween nights there are acts of commission and acts of omission which fly beneath the radar of the legal system because they meet a reduced community standard on Halloween. The more that these actions bump against the outer edges of that community standard, the more humourous it is until there is a breaking point. Remember how your mother admonished you to stop waving that sharp stick because you will take someone’s eye out? It is exactly like that; it was all very much fun until Tommy lost an eye.

John R. Mills was a man who loved stories where the action is on the edges of acceptable community standards and/or legality – and the subject matter didn’t have to be as serious as murder either.  He had a keen sense of small-scale mischievousness and that mischievousness fuelled his ability not only to maintain a boy’s view of the world but also to engage in adolescent behavior from time to time during his adult life. I sense that we shared this connection.

On the other hand, what if I read John’s non-verbal responses incorrectly? After all, as a young man he was a member of the mounted force of the Toronto constabulary and he was a superior horseman and rider all his life, winning cutting championships in Kentucky and Kansas. Perhaps he was imagining himself in the role of a mounted officer with the power of a trusty and fearless police horse snorting underneath him as he provided crowd control on Halloween night. In the end it matters not as John was not one-dimensional in any respect and I know he would have revelled equally in a detailed account of police horse vs prankster on Halloween.

A larger moral message?

As I looked at John’s face, eyes alert under the closed lids, a slight smile on his lips, I knew that I had transported him to a different place, free from the weight of medical evidence, medical procedures and medical consequences – all of which pointed to him becoming a medical and demographic statistic of the worst kind.

I sense that some of you may be looking for a more meaningful lesson in morality to emerge from these small town shenanigans and my telling of those stories to John. Sometimes in life there isn’t an obvious moral lesson. Sometimes, when the conditions of life warrant, it is just a matter that we, like John, deserve a few short moments away from the serious (sometimes life and death) decisions men and women have to make. We should be granted that respite.

I could end this post here except for the fact that the end is not here … for those who wish to argue over whether actus reus (the act) and mens rea (you meant the act to have the consequences it did) were both present in the potato plug sump pump case and that a “duty to act” was breached in the act of omission (not confessing) such that a crime was committed… but because I cannot “plead the Fifth” in Canada I am just going to mutter “mea culpa” under my breath and move on … and I would suggest you move on with me except that …. the questions about Parkinson’s go unanswered if we do.

Afterword

What causes Parkinson’s? It seems obvious to me that outhouses and poorly located “honey pits” are not high on the list of suspects. More and more the research data is leading us to the conclusion that pesticides, insecticides and fungicides are prime suspects as co-conspirators and should be investigated with increased vigour and resources. Think of it this way: the environmental violations of outhouses located too close to a water supply are summary offences or misdemeanors compared to the indictable offences or felonies that are negligence and misuse in the development and application of chemical toxins in the environment.

I am no lawyer but it seems we are closer to establishing that, at least for some portion of the Parkinson’s population, there is an actus reus but is there no agreement that there is mens rea by those who develop, manufacture, sell and use the toxins i.e., they did not intend that the chemicals to contribute to an increase in neurological diseases of which Parkinson’s disease is one. But should they have known? After all, they were developing chemicals that work by attacking the nervous systems of those pests they were trying to kill. Would that not twig someone to ask the question, what does this mean for human neurological systems? If it did, then did they find that it was without cause for concern? Did they downplay the consequences? Did they willfully ignore the signs? Is there an act of omission? Did someone breach a duty to act? Are we confident that there is no corporate interference with, and influence on, the research process?

There are so many questions, so little real time and so few resources. The weight of the evidence is beginning to accrue towards a conclusion that exposure to pesticides is related to Parkinson’s disease but don’t hold your breath for chemical corporations to step up and say, “mea culpa”;  to start making amends (reparations is probably too strong) through financial contributions to independent Parkinson’s research; and to defray the costs of pharmaceuticals and medical/therapeutic devices and programs which enhance quality of life for Persons living with Parkinson’s.  That would indeed be a radical change in direction.

NOTES

Note 1:

Definitions:  An “outhouse” is defined as a permanent private privy used as a toilet and situated on a permanent privy pit usually 3 to 6 feet (1 to 2 meters) deep within which human waste is kept, maybe forever. The outhouse is located on private property or at a private residence and serves the sanitation needs of the owner and/or tenants. For further clarity, an “outhouse” is not equivalent to a temporary, transportable, commercial “port-a-potty” used on construction sites and at outdoor entertainment sites and fairgrounds. Such port-a-potties as the name suggests are built to be transported and have an internal waste holding tank that is designed to be emptied at a sanitation facility.

Disclaimers: 

I do not advocate that outhouses be tipped at Halloween or any other occasion nor do I condone such action as serious injury and/or property damage may result.

I am aware through social media sources that port-a-potties are overturned as a prank from time to time. I do not condone such behaviour.

I do not condone the blocking of sump pump hoses in any manner. Serious property damage may result.

Note 2:  As I write this post we are experiencing very heavy rains in eastern Ontario and western Quebec. Many homes have been flooded and their residents evacuated. It is not my intention to diminish the severity of these events by making light of the consequences of the potato plug in the sump pump hose. The situation as described, in Altamont at Halloween of that particular year is not comparable.

Note 3: I follow the convention used in most of the research literature and government documents where “pesticides” is an overarching concept that includes insecticides (insects), herbicides (plants and weeds), and fungicides (fungi.)

APPENDIX: Outhouses are a serious measure of health and sanitation

WaterAid reports that in 2015 there were over 65,000 Canadians (0.2% of the population,) mostly in rural areas who do not have safe reliable access to toilets inside their homes. The UK has over 500,000 (0.8% of the population) citizens without proper inside toilets. Interestingly, WaterAid claims the USA is approaching 0% of pop with just slightly over 36,000 citizens without adequate toilets, bettering both Canada and the UK.

Only 17 countries in the world – including Australia, Japan, South Korea, Singapore and Saudi Arabia – have reported that just about every single household in the country has a safe, private toilet. (WaterAid 2015)

These numbers probably represent the best-case scenario and unfortunately we will never know the actual numbers as the question on indoor toilets is no longer asked routinely on census forms in Canada and other countries. The Washington Post puts the 2014 estimate as considerably higher at over 1.6 million households in the US without adequate indoor plumbing facilities i.e., they do not have one or more of the following: a toilet, a tub, a shower or running water. In any case, many thousands of outhouses are still in use as the primary toilet facility for households, and many more outhouses serve as secondary or back up facilities for use when the indoor toilet is otherwise occupied.

When my parents moved to an apartment in The Pas, Manitoba in the early 1970s after our father got a job at the pulp and paper mill there, I recall how excited my mother was that they were on town water and sewer. In fact, it was the very first time (ever!) that our mother had lived in a home with running water and a flush toilet. Needless to say, she was thrilled!

REFERENCES and RESOURCES

Ahmed H, Abushouk AI, Gabr M, Negida A, Abdel-Daim MM, “Parkinson’s disease and pesticides: A meta-analysis of disease connection and genetic alterations.” https://www.ncbi.nlm.nih.gov/pubmetd/28412655

Alberta Environment and Parks, http://aep.alberta.ca/water/programs-and-services/groundwater/documents/AlbertaWaterWellSurvey-Report-Dec2010.pdf

Backcountry Canada Travel, http://www.backcountrycanadatravel.com/outhouse-culture-canada/

Canadian Centre for Occupational Health and Safety, Fact Sheet on Pesticdes http://www.ccohs.ca/oshanswers/chemicals/pesticides/general.html

Canadian Journal of Neurological Science https://www.cambridge.org/core/journals/canadian-journal-of-neurological-sciences/article/geography-drinking-water-chemistry-pesticides-and-herbicides-and-the-etiology-of-parkinsons-disease/B8A09AAE44121012B905C358CCE9A8EF

Cosmetic Pesticide Ban Manitoba https://cosmeticpesticidebanmb.wordpress.com

Cottage Life http://cottagelife.com/environment/10-things-you-probably-didnt-know-about-outhouses

Grandpa Remembers: Tipping over Outhouses, July 25, 2010. http://grandpa-remembers.blogspot.ca/2010/07/tipping-over-outhouses.html

The Guardian, “Can you catch Parkinson’s?” https://www.theguardian.com/education/2002/apr/04/medicalscience.healthandwellbeing

Gunnarsson, Lars-Gunnar and Bodin, Lennart,“Parkinson’s disease and occupational exposures, A systematic literature review and meta-analysis,” Scandinavian Journal of Work, Health and Environment, online first, April 2017

Hamblin, James, “The Brain of a Fighter” in The Atlantic, June 8, 2016 https://www.theatlantic.com/health/archive/2016/06/ali-and-parkinsons/485798/

Kashatus, William C, “Outhouse has faded from region’s landscape,” in Standard Speaker, June 26, 2011 http://standardspeaker.com/outhouse-has-faded-from-region-s-landscape-1.1165644

Law Lessons, http://www.lawlessons.ca/lesson-plans/2.1.definition-and-principlesb

Mayo Clinic, http://www.mayoclinic.org/diseases-conditions/pinworm/basics/causes/con-20027072

Parkinson, Dr. James, Essay on the Shaking Palsy, originally published as a monograph by Sherwood, Neely, and Jones (London, 1817). Republished by J Neuropsychiatry Clin Neurosci 14:2, Spring 2002.

Parkinson’s Disease Foundation, http://www.pdf.org/environment_parkinsons_tanner

Parkinson’s Saskatchewan, http://www.parkinsonsaskatchewan.ca/pd/nd.html

Popular Mechanics, http://www.popularmechanics.com/home/how-to/a3896/4305543/

Small Cabin, http://www.small-cabin.com/forum/5_781_3.html

Summers, R. (2010). Alberta Water Well Survey. A report prepared for Alberta Environment. (University of Alberta: Edmonton, Canada).

Survivopedia, http://www.survivopedia.com/waste-disposal/

Warick, Jason, Canadian Broadcasting Corporation News, Saskatoon, “U of S, prof under fire for Monsanto ties,” May 17, 2017 http://www.cbc.ca/news/canada/saskatoon/u-of-s-prof-under-fire-for-monsanto-ties-1.4100399

Washington Post, https://www.washingtonpost.com/news/wonk/wp/2014/04/23/1-6-million-americans-dont-have-indoor-plumbing-heres-where-they-live/?utm_term=.42d2da15b8dd

WaterAid, IT’S NO JOKE: The State of the World’s Toilets 2015 Its_No_Joke_2015_the_state_of_the_worlds_toilets.pdf

Wikipedia, https://en.wikipedia.org/wiki/W._C._Fields

© Stan Marshall (The PD Gardener) 2017

 

LIST OF POSTS IN THIS SERIES

DIRECTIONS: Taking the Scenic Route to Parkinson’s and Beyond

DIRECTIONS Part I: “Stay where you’re at ’til I comes where you’re to, b’y“

DIRECTIONS Part II: Stories of Halloween, outhouses, potatoes, pesticides, Parkinson’s and mea culpa

COMING SOON!

DIRECTIONS Part III: (Working title) Detours and your GPS 

 

LEARNING TO WALK AGAIN … OR … READING BETWEEN THE LINES

Learning To Walk Again … Or … Reading Between The Lines

Author’s foreword

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

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

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

PERSON WITH PARKINSON’S RENDERED IMMOBILE

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

IMG_0105

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

Looking for answers (in all the wrong places?) 

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

and

Knee bone connected to the thigh bone

Thigh bone connected to the hip bone

Hip bone connected to the back bone (Endnote 2)

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

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

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

Symptoms defy explanation say medical specialists

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

The new normal 

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

IMG_2389

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

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

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

End Notes

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

© Stan Marshall (The PD Gardener) 2016

In Altamont, Living to be 100 is Old Hat or Will you still need me, will you still feed me, when I’m 64?

Author’s Foreword

hat Thepdgardener IMG_0608

It happens sometimes that people are overlooked. They shouldn’t be but they are. I was looking at some old photos the other day and it occurred to me that in my last blog post I unintentionally neglected another centenarian, a remarkable woman who just happens to be my daughters’ great, great aunt (my ex-wife’s great aunt to be precise.) So it is that Jean Madill joins Jemima (‘Aunt ‘Mime) Wilson, Mary Anne Scoles and Mary Armitage as centenarians I have known.  Jean was not only a contemporary of these three women but she shared that same four-mile geographic proximity to Altamont, Manitoba. The probabilities of a convergence of people (all women in this case) who live to be 100 or more years old within the same locale must be pushing the boundaries of something more than mere coincidence. If living to be 100 years old is getting to be “old hat,” then I would like my old hat to join that select grouping in another 33 years!  It seems a little premature to celebrate that occasion just yet given that I am a Person with Parkinson’s (PwP) and have other health problems… but you never know.

This post has taken me eons to write. I thought it was going to be a quick exercise to correct an oversight but it has turned out to be an excursion into social and health policy on care and care giving for those with chronic conditions. Many of these thoughts were sparked in a round about way by memories of Jean Madill, some were honed with the assistance of my friend Selma Garten and some were rekindled in recent days with the passing of my cousin, Bob Marshall, after a long battle with Parkinson’s and dementia.

But I have to start somewhere so let me give you the lowdown on Jean Madill and how her story relates to the importance of family, ideology and public policy in determining how and where we live out our “golden years.”

Jean Madill

Born: December 14, 1905 in Altamont, Manitoba

Died: November 6, 2006 in Notre Dame de Lourdes, Manitoba (100 years 325 days.)

Father: R. W. (Wes) Madill. Born February 5, 1871 in Ontario. Died: July 3, 1944 in Altamont

Mother: Jane Elizabeth (née Maloney) Madill. Died: June 15, 1955.

 

Jean Madill Sadie Dawson Wilson IMG_1569

Jean Madill (L.)  Sadie Wilson (R.)  In Sadie’s grocery store. Photo: S.Marshall c. 1982

Why have I been thinking about Jean? Is it that she joined that select club of being a woman centenarian who lived in Altamont?  Partly I guess, but that is not the whole of it. Jean was a unique individual who lived a unique life in unique circumstances. To be blunt, she was a character who would have had to be invented if she did not exist in real life. She deserves to be accorded a special place in the recorded annals of Altamont, Manitoba. Unfortunately though, I don’t find much of her in those records.  Maybe I am not looking in the right annals?

Please bear with me while I think this through a bit. You see, I knew Jean mostly during the 25 year period after she turned 50 years of age.  Minor arithmetic will tell you that while I am able to relay some of my own personal memories and thoughts from the time period I knew her best, I can only touch indirectly upon her first 50 years and her final 25 years.  Still,  Jean’s life has me thinking about care for the elderly, disabled, mentally ill and those with chronic health problems.  She provides a springboard for a discussion about the ideology, values, and the evolution in treatment for those with mental health problems and the pressing need in today’s society for care of the elderly with or without chronic health complications.  Prior to retirement my job required me to be knowledgeable about health policy and the politics of health care.  Now, I am a Person with Parkinson’s (PwP) and these matters are much more in my face in a very personal way.

No memories are insignificant 

I feel it is only fair that you should know that my recollections of Jean and others have been processed, filtered and stored in my cerebral cortex waiting for the appropriate stimuli to unlock them.  I am not certain how memories are for others but mine do not flow over my brain like a smooth, soothing stream of healing water.  No, any particular memory making its way through my brain crashes against the folds of my cerebral cortex  and against other memories. The energy released from these collisions is what I call ‘gray energy’ inasmuch as it emanates from the intersection of the gray matter of my brain and the gray areas in my memory.  This ‘gray’ energy has an irradiance and illuminance enabling the “mind’s eye” to detect subliminal images within the darkest recesses of the cerebral cortex.   [Sorry to disappoint you but ‘gray energy’ in this context has nothing to do with the burning of fossil fuels, and ‘subliminal’ has nothing to do with whether you are unknowingly being tempted to buy popcorn at the concession in the movie theater.]

Memories are critical to how I interpret the world and releasing them is sometimes a curious procedure.  Although the process I outline above seems rather ad hoc and perhaps chaotic, I don’t believe that ‘Chaos Theory’ plays any role in the formulation of my beliefs i.e., in my brain there is no equivalent of a butterfly flapping its wings in Brazil, creating (or preventing) a hurricane in Texas.  While my heart may flutter from time to time for good reason (perhaps romantic, perhaps physiological) and my dopamine deprived brain will challenge my equilibrium, my perception of the world remains firmly rooted in whether ‘facts’ and memories line up. You see, I don’t believe that my memories, even seemingly insignificant ones, are ad hoc.  Memories surface in a never ending human quest to understand and explain our existence, and in our innate drive to improve our lives (not just individually but also collectively.)

The more memories of Jean Madill rise to the surface, the more I realize that these particular images lead to substantive questions of social policy and social change. How does society care for those who have chronic and long term illnesses?  Who has the financial resources to meet the level of care required –  the state, institutions, communities, families?  Who has the capacity to ensure that the burden of care giving does not weaken and destroy the structure of support around those who need care?   Can a rose with a cloying name assist in understanding the values of a caring society?  What does the stigma of mental illness have to do with anything?  Some of these questions may appear to be unconnected but often the circuitous ‘milk run’ is the best way to see the incredible beauty of the countryside … or if you love train travel you will have the advantage of observing the backbone or the back side (some say backside) of every community.

Altamont 1906 IMG_6001

Altamont 1905   Photo from Memories of Lorne 1880 – 1980.

The photo at the left shows the main street of Altamont in 1905, the year Jean Madill was born. Only the United Church building (white A frame building at left) remains today. The train tracks cross the photo at the bottom.

Children of the 1950s

I will begin my journey with a brief look at children in 1950 rural Manitoba. When I was a child we would tease Jean Madill. I don’t recall it being malicious teasing and there were many occasions when I remember Jean laughing at a trick or two she played on us.  Still, you know how seven and eight year old boys behave sometimes – fuelled by a mixture of underdeveloped (not undeveloped) testosterone, a surfeit of bravado, boundless mostly misdirected and misguided energy, powered by a brain roughly equivalent to that of a chimpanzee, making for unpredictable and borderline acceptable social behaviour.

In the 1950s these chimpanzees … er … children were set loose to run unsupervised up and down the main street in Altamont on a Saturday night, the night when both farm and town families ventured into the stores to shop for groceries, get a haircut, skate or curl in winter, visit with friends and those acquaintances who lived farther away, and for the men to disappear into the Altamont Hotel slaking their chapped lips and dusty Souls with a few drafts of beer, away from the prying eyes of wives and other busy bodies. [Hey, I am just calling it like it was.] In other words, the adults were busy and the chimps … er … children had slipped their minders. A friend of mine used to categorize children as being “rug rats” until they could run and climb at which point they became “yard apes” or “street monkeys.” I guess we were the latter.

Sometimes the street monkeys would hurl taunts at each other and tease anyone who was different or appeared vulnerable.  Animal behaviours can rise to the surface in uncontrolled situations.  Jean Madill was one of the vulnerable and we (I am admitting my culpability here) would race past her chanting

Jean, Jean made a machine

Joe, Joe, made it go

Art, Art blew a fart

And blew the whole damn machine apart.

I guess you have to be in Grade 2 or 3 to appreciate how close this is to genius poetry for a seven-year old … well, a seven-year-old boy anyway.  Obviously, this little rhyme has been around since the 1950’s as I personally recall using it during those years. It was reprised with widespread attention in 1987 as “Zed’s Poem” in Police Academy 4: Citizens on Patrol. However, the rhyme is a variation of this older version originating in the 1920s.

Gene, Gene, made a machine

Joe, Joe, made it go

Frank, Frank, turned the crank

His mother came and gave him a spank

Sent him over the river bank. (See note 1)

Of course, as we were chanting it directly to our Jean Madill, we always thought the rhyme referred to “Jean, Jean” and not “Gene, Gene.”

Mental illness or mental health?

Why were we teasing Jean Madill?  That is a very good question with a not very good answer, I am afraid. Today, we would probably say that Jean had a mental illness or disability. It may even have a name although I don’t know that it does.  In the 1950s such conditions were described in common parlance as crazy, loony tunes, nuts, crackers, whacko, or some other not very helpful appellate. Not very adult I know, but at what age does adulthood begin? [When do street monkeys become sentient human beings?] As a corollary, is it too much to expect children to be adult? Whatever the answer, it is never too much to ask adults to be adult and the fact that many adults also said these same insensitive things is telling of both the “adults” and the times. Very often, people of that day did not address mental illness openly or compassionately and it was almost impossible to escape the stigma attached to it.

Looking back on it, I do sometimes think that maybe we children were a slight bit more adult than I give us credit for being.   To the best of my recollection, I never heard children say Jean was a “retard,” an “imbecile,” a “moron,” an “idiot,” or a “lunatic.“ Ironically, these were names we reserved for our close friends or those with whom we wanted to be friends, but weren’t.  It turns out that sociologists and criminologists studying deviant behaviour and government social policy experts and administrators had already reserved these names for use in their professional studies. Individuals were placed in “lunatic asylums” or “insane asylums” because they were “criminals,” “dangerous,” “maniacs“ or better yet, all three.  I cannot imagine that any of these descriptors were seriously applied to Jean Madill.  I certainly never saw her this way.

Most likely, we did not call Jean those names because Jean, 45 years older than we were, was not in our cohort.  She was of our parents’ and grandparents’ generations. We knew she was “different” but none of us perceived her as a threat. She was a benevolent figure from another dimension in our dramatis personae.  I have to be careful here not to leave the impression that we somehow were “enlightened” and should be applauded. Save your applause.  Consciously we weren’t but underneath our chimp behaviour lay a child’s inherent trust – not always to be relied upon but in this case a good barometer.

I have not read extensively on the subject of mental health but what I have read indicates that “mental health” as a concept was not in vogue at the turn of the 20th Century.   Put another way, mental illness had not yet been re-branded as mental health.  In fact, the first Mental Health Week in Canada was declared only in 1951, a full 46 years after Jean Madill was born. At the time Jean entered this world,radio was still two decades away from being the latest craze and the widespread use and ownership of television sets was even further away. Social media campaigns such as Bell Let’s Talk Day were unheard of and it would be almost fifty years after the first Mental Health Week before the Internet and social media would provide a platform in the struggle to end the stigma of mental illness; to highlight the need for access to care and services; to provide guidance for workplace mental health initiatives; to fund research on treatments and cures; and to support community organizations in their local programs and services.

logo_letstalk_2en

The 2016 Bell Let’s Talk Days raised an astonishing $6,295,764.75 from 125,915,295 calls, texts, tweets and shares. Since 2010, the total contribution is approaching $100,000,000 to mental health programs. We should be encouraged by the support this campaign has received but we have to wonder why, more than 110 years after Jean Madill was born, the conversation about mental health remains so difficult and illusive.

The language of mental health

As a child the most charitable thing I recall hearing in relation to Jean Madill’s situation is that she had been studying to be a nurse when she had a “nervous breakdown” (see Note 2.)   I was eight years old and I was not exactly sure what this phrase meant. I am not sure I know even now. I do know that the term is not a medical one and it does not refer to a specific condition. In general, it describes a period of stress (usually temporary) where a person is not able to function normally in daily life. Everything just becomes too overwhelming. (See Note 3)

What is mental health anyway? About 30 years ago some friends were visiting with their precocious five-year-old daughter. Let’s call her Abigail.   Abigail and I had been dispatched to the corner store for some milk and as we walked she started a rather serious conversation about how she was feeling. She suddenly stopped walking, stood back, put her hands on her hips, looked me straight in the eye and announced quite pointedly, “I have had several mental breakdowns, you know.” It took me by surprise and I snorted a little laugh before recovering quickly to say sympathetically, “That’s too bad but I understand that you grow out of them.” Almost immediately she switched to another subject and nothing more was said about her breakdowns. When I relayed this story to her parents later that evening they laughed and explained that “temper tantrums” in their family are referred to as “mental breakdowns.” It seemed reasonable at the time but now it has me wondering where temper tantrums fit in the typologies of disorders in relation to depression or anxiety, and whether ‘tantrums’ could ever constitute an inability to function in daily life, or at least be a symptom of mental illness, an indicator of things to come.

I can only imagine that my own parents and other family members must have wondered about my early childhood behaviour at times. Some of my very earliest memories involve throwing temper tantrums when I didn’t get my way. I recall one occasion when I threw a huge tantrum, a performance worthy of an Oscar – full out crying/wailing, foot stomping, yelling, and screaming. I don’t recall pitching anything but I may have.  To make matters worse we were at my aunt and uncle’s house and I am certain my parents were mortified by my behaviour.  I recall being banished to a quiet room from which I escaped to hide in the car because my parents were going to go into the city and weren’t going to take me!  The forgoing “drama”unfolded but I feel compelled to reserve more specific details for another blog posting – or maybe for the next time I have an opportunity to occupy a therapist’s couch!

Stan c 1952 IMG_6054

The PD Gardener c. 1952   Photo: R. B. Marshall

My point is that the language of mental illness and mental health is tricky and in Jean’s case categorizing the problem as a “nervous breakdown” seemed carefully designed to project 1) an impression that Jean had been “normal” but had some sort of mental collapse from which she was not able to recover; 2) that she was intelligent and studying to take on a respected and important professional career; and 3) she was to be treated with kindness and respect.  Aside from some teasing and mild harassment by unthinking, uncaring, and unaware chimpanzees/children, I perceive this to be the case but I am certain there were undercurrents through the community that were not as innocuous. You would think that something unsavoury had to have happened in the 100 years of Jean’s life, but if it did, I don’t know what it was.

The changing landscape of mental health

When the Manitoba Asylum at Selkirk, Manitoba was built in 1886, it was the only facility on the Canadian prairies with separate facilities to care for the mentally ill.  It shouldn’t surprise anyone that overcrowding was an issue almost immediately.  As a result, a “Home for Incurables” was established in Portage La Prairie and in 1891 a second asylum opened in Brandon. By 1914 there were about 1,500 patients in the three Manitoba facilities combined. While it is true that more attention was being given to mental illness, care for patients was not well understood and both psychiatry and psychiatric nursing in Manitoba were still at rudimentary stages. The nurses’ residence did not open at the Selkirk Hospital until 1926 and it wasn’t until 1960 that Psychiatric Nursing was established as a separate professional entity in the province. But by 1950 the number of patients in psychiatric hospitals in Canada ballooned to over 66,000.

The distinction between a mental health concern and a mental illness [a mental health concern becomes a mental illness when ongoing signs and symptoms cause frequent stress and affect your ability to function, see Note 4] was not well understood nor were the wide variety of symptoms and behaviours. People did seem to understand that stress, a traumatic life experience, an abusive relationship, brain damage, chronic medical conditions, or drug an alcohol abuse might cause mental illness.  Even so, there was often disagreement on treatments and availability of treatment was not guaranteed.

Have mental health matters become more clear in a present day world?  I am not sure, as there is a bewildering array of concepts joining the aforementioned “nervous breakdown” and “mental breakdown,” challenging the layperson to keep abreast. Just what are the differences and similarities among concepts such as mental illness, mental disability, mental impairments, mental retardation, learning disability, psychiatric disability, intellectual disability, anxiety disorder, mood disorder, depressive disorder, affective disorder, seasonal affective disorder (SAD), schizophrenia disorder, dysthymia, obsessive compulsive disorder, post-traumatic stress disorder, to name a few?  I do understand that specificity in definition is required to advance science but sometimes in the interests of awareness, simplicity works. Mental illness comes in many shades and shapes and when a mental illness interferes with the performance of major life activities, such as learning, working and communicating, etc. it is a disability.  (See Note 5)

So it was that Jean Madill was a young adult in the 1920s with a mental illness/disability. Available facilities for the treatment and care of mental illnesses were nascent and poorly equipped to classify patients, never mind actually treat them.

The changes in the name from “Goal” (sic) [I assume it should be Gaol,] to “Manitoba Asylum”, to “Selkirk Insane Hospital” [1910], to “Selkirk Hospital for Mental Diseases”, to “Selkirk Mental Health Centre”, reflect the changes in attitude, philosophy and function that mark the course of progress in the care and treatment of the mentally ill. (See Note 6)

These name changes coincide with a policy to shift care from institutions to community in the 1950s in an attempt to eliminate or at least soften the negative effects of institutions. New and better medications, approaches that stressed rehabilitation, and a program of foster care for children during the 1950s and 1960s, dramatically reduced patient populations in institutions. Institutions did however pick up the pieces when families and/or communities failed or where the patient was not suitable for placement in the community.

Eva IMG_3777

Genevieve Evangeline (Eva) Marshall   Photo credit and date unknown

[Interestingly, my Aunt Eva Marshall played a key role in many children’s lives as a foster parent during this time period. I recall meeting several of her foster children when I visited with my cousins during summers at the Brandon Experimental Farm. While there was some “drama” from time to time, I do not recall any interaction as being upsetting … or uplifting for that matter. It just was.]

Two cases from the mental hospital grounds: Jessica and the King of Prince Edward Island

In the late 60s and early 70s, I played hockey in Brandon and Selkirk which coincidentally were the locations of mental hospitals in Manitoba.  In Brandon my teammates and I would often go to the grounds of the mental hospital to play soccer, Frisbee, baseball or just hang out on nice warm spring days.  Often, we would encounter staff and “inmates” as we called them from the hospital. I was totally ignorant about almost every dimension of mental illness. I recall being very surprised to encounter the teenage granddaughter (let’s call her Jessica) of some people I knew. I met Jessica on several previous occasions at her grandparents’ house. Apparently she was well known to my friends as someone who was being treated as an outpatient at the Hospital and liked to engage in sex talk.

The few times I saw Jessica on the Hospital grounds we were with our respective groups of friends – all girls in her group, all guys in mine. I recall the encounters as hyper – dramatic, foul – mouthed displays of aggression graphically punctuated with shouted litanies of various sex acts and behaviours.  It was not the innocent, humorous and flirtatious banter between teenage girls and boys intent on striking up friendships and romances or even temporary sexual dalliances. Jessica and her gang never escaped the collective persona of a slut. What was the collective persona of the gang I was with, you ask?  Good question. We were probably closest to a tormentor, willingly providing the stimuli, the mean teasing, and the suggestive contexts for the sluts to hurl the filth that we wanted to hear.  I don’t know if we took Jessica’s gang down to our level or vice-versa but the fact is that we were both at the same low-level level – so far down that no lower level could be achieved without physical contact.  But to my knowledge, no relationships, sexual or otherwise, ever developed between members of our groups. It seems weird but we always parted somewhat amicably as our ‘fuck you’ and ‘fuck off’ goodbyes and other creative invective hurled in both directions were pinned in the air like corsages and boutonniere to be cherished forever as keepsakes.

I was accustomed to crude behaviour as it is the norm among young hockey players but I have to say that these experiences with Jessica and her friends rattled me a little. Don’t get me wrong, I wasn’t a saint by any means but I was fresh off the farm so to speak and had never encountered such explicit behaviour in girls. I suppose Jessica might have been concerned that I would rat her out to her grandparents but I doubt that this was a major issue. She needn’t have been concerned anyway as I didn’t know them well enough to broach this topic, and I can’t imagine what I would have said to her grandparents that would have been helpful to keep the conversation going. “Oh by the way, I saw Jessica on Saturday and she asked me to …. “ I don’t think so! Besides, it has taken 50 years for me to even let it rise to the surface. I never saw Jessica after those few encounters that summer.

In Selkirk, several of my friends worked at the Selkirk Mental Hospital. Sometimes a few of us would go to the manicured green spaces of the Hospital to beat the summer heat. Often we would encounter a friend who was on the grounds working with a patient or two. I don’t have very fond memories of those occasions. From my perspective there was always an element of the unknown, a concern for safety, and there was an undercurrent of ridicule and nastiness of staff and visitors towards patients that sometimes surfaced in ways that were seemingly innocuous, but were anything but innocuous. At the time we thought it was funny to ask one particular patient repeatedly, “What is your name?” And when the patient answered just as predictably and repeatedly, “The King of Prince Edward Island,” we would laugh uproariously. Like small children we, including the patient it seems, never grew weary from the repetition and only stopped when the orderly ordered us to stop. While hospital staff was complicit in these exchanges, to their credit they were the ones who knew to draw the line when our games became too harassing.

I am not sure if either the Selkirk or Brandon Hospitals were options for the Madill family in their search for treatment for Jean. I would be surprised if there were not inquiries and/or consultations. However, I am not privy to this information and while I am interested from both an academic and a personal perspective, these details are not germane to the story I recount today. Suffice to say that by the mid 20th century the paradigm for the delivery of mental health programing had shifted from institutions toward community and family.

The importance of family

The Madills had roots deep in the community going back to the early 1890s.  R.W. “Wes” Madill married Jane Elizabeth Maloney in 1894 and went to Altamont from Austin, Manitoba to manage a retail store owned by his uncle John Sampson.  Wes would buy the business in 1902 and run it for the next 28 years.   On the Maloney family side, Elizabeth’s father, Henry, came to Altamont in 1890 and was Postmaster from 1907 – 1920.  Prominent in business and public service, both families were well known and respected throughout the community.  [Coincidentally, my own father was the Postmaster from 1955 – 1972.]

Those deep roots and the relationships that grew from them would cement Jean’s path in the future. In essence, the family pulled its own ‘safety net’ tightly around Jean such that she was able to live her long life in relative dignity in the same small community where she was born – a claim few others can make.

Jean had three brothers. Clifford married Jessie Skinner; Gordon married Fanny Acaster; and her twin brother Ken married Elsie Snowdon. Her two sisters were Mabel, married to Jim Dean, and Grace who married Jack Shellard. Cliff and Gordon continued to live locally and I recall the others were in contact regularly.  Over the years these siblings, their partners, extended families, and other community members provided a safe haven for Jean – one that permitted her not just ‘to survive’ or ‘to exist’ but ‘to live’ with some form of dignity.

To be blunt, providing care for someone with a long term illness requires considerable financial resources irrespective of whether the care is provided in an institution, the community or by the family.  My understanding is that one source of financial support for Jean was her parent’s estate. Her father, Wes Madill, died July 3, 1944 at age 73 when Jean was 38 years old and she was 49 when her mother, Jane Maloney Madill, died on June 15, 1955.  No one could have guessed that Jean would live to be almost 101 years old, outliving her immediate family members and most of her contemporaries in the community.

The Madill estate included some income-generating property such as the “Madill Block” established on Altamont’s Main Street at the turn the 20th century. Unfortunately the store was destroyed by fire early in the morning of December 3, 1905. The loss of the store and stock was valued at $10,000 and was insured for only $6,700 but Wes continued to operate the store out of the Maccabbee Hall [another interesting topic for a future blog post] until 1907 when a new building was completed. The risk of fire must have been very high in these communities [I plan to explore this theme of fire in future blog posts] as on a Sunday morning in May 1923 fire levelled Madill’s store once again. And, once again Wes Madill operated the store from another property until he could rebuild. The business was finally sold to George Bishop in 1930 but I believe the Madill family retained ownership of the Block.

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Photo showing the Madill Block in early 1950s. Fire would soon destroy the hardware store at the left. Photo: unknown

In the 1950s the Madill Block had two competing grocery stores coexisting side by side on the street level. (I remember my dad telling me that we should patronize each store to an approximate equal amount.) There were also three or four apartments on the second floor. The Block has specific memories for most children of my generation. It certainly does for me. The very first time I watched television was in Orville Bishop’s apartment in the Block. Orville was a bachelor farmer who moved to town and he owned the first and only TV in the community at the time. Along with his farming and bridge playing buddies, he watched hockey on Saturday nights but on Saturday afternoons, Orville’s apartment became the local cinema as his door was open for us to watch Horse Opera.  We huddled around the small black and white screen where Roy Rogers, Gene Autry, Zorro, Rin Tin Tin, Wild Bill Hickok, Hopalong Cassidy, Wyatt Earp, The Lone Ranger, Maverick, My Friend Flicka, The Rifleman, Texas Rangers, The Last of the Mohicans, and others were central to our socialization into a culture where good guys wore white hats and bad guys wore black hats – and women played subordinate roles …. and everyone used guns. How did we escape this experience to become enlightened adults? … or did we?  Another topic for another day …. but right now we should return to the key figure in this story.

‘Stick it where?’ money

Jean Madill also lived in an apartment in the Block for quite some time; her small quarters piled high with papers and magazines. She subscribed to one of the Winnipeg papers – I am not sure which one but it was clear later in my life that if you were a Conservative you subscribed to the Winnipeg Free Press and if you were a Liberal you subscribed to the Winnipeg Tribune and maybe the Star Weekly. If you were NDP, you subscribed to the Toronto Star Weekly, and maybe the Tribune. I remember my friend R.W. and I reviewing the results of the Altamont poll after an election. We discovered that three people in the poll had voted NDP. We knew who two of them were but couldn’t place a name beside the third NDP vote. I think I know who it was but without absolute proof, I leave it a mystery. Anyway, I am not sure how much Jean knew about, or cared about, politics but I do know she read the papers – and then kept them in her apartment.

Family members dropped by from time to time to take Jean to a neighbouring community for lunch. She enjoyed such outings but before she returned other family members had swooped down upon her apartment, taken the reams of paper and cleaned up. Her place was nice and tidy again. Jean of course would be mad as a hatter and would curse at everyone involved. She sometimes remembered from one time to the next and would refuse to go for lunch at the next invitation … but mostly she liked to lunch and the ritual would continue – swearing and all. I like to think that she played the game and played her family, but who knows? Whatever the case, her family was doing its best to look after her interests.

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Desolate winter view to the west. Post Office is on right. The “A” frame building is United Church.  Photo: S. Marshall 1982

When Jean began to receive Old Age Security, she enjoyed the freedom of having money over which she had some control. In fact, she occasionally offered money to family members for cleaning her apartment or for inviting her to lunch or dinner. Sometimes she left the money later, under a vase or lamp, upon visiting that person’s home. Of course, family members would not take Jean’s money, and Jean, feeling the power of her independence would retort indignantly, “Well, stick it up your ass then!” Others are in a better position to confirm this story but I understand the money was kept to offset Jean’s unforeseen expenses and/or future needs. The money accumulated and it was commonly known among family and friends as “Stick it up your ass money.”

Cookies and commerce

When a new friend Bruce and his family moved to Altamont from Winnipeg, we played at their apartment and in the hallways of the Block, and Jean would often invite us into her apartment or sometimes a group of kids would knock on Jean’s door. We would crowd in when she answered and stand in a small clump (there were no chairs or couches free of papers or boxes) and she would offer us cookies, or bread with uncoloured margarine the same as Aunt ‘Mime would, except the bread was not as appetizing. In fact, Jean was most often very apologetic as she proffered treats, “I am sorry that I don’t have much to give you but take some of these cookies, they’re going mouldy anyway.”  My recollection is that we always ate what was offered and none of us suffered any negative consequences.

When I was about 10 years old, dad put me to work in the confectionery which was separated from the Post Office by a thin half wall of 2 x 4 studs and plywood with wire mesh to the ceiling. To get from one side to the other you used an interior particleboard door which had no lock. I remember my father laughing after the Post Office had been burgled (it was robbed more than once) that the crooks took time to smash the door down when all they had to do was turn the handle. Before I get side tracked on the history of burglaries in Altamont (fodder for another blog), let’s return to Jean Madill.

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Altamont Post Office, Confectionery and Bus Depot    Photo: unknown

Jean usually made the short walk (about 75 meters) to the Post Office each day to pick up her mail after which she would often purchase a treat in the confectionery. In order to pay, she would search through a big shopping bag pinned to her sweater or coat to retrieve another smaller bag containing a smaller purse, and inside the purse was a small plastic change squeeze. She would dig out her 25 cents for payment and then patiently return any change (yes, change from 25 cents!) to the squeeze purse that was then returned to its assigned space deep inside the succession of bags. Sometimes, there were more bags than at other times and it may not have been the height of fashion but it was a security system that seemed to work, as I don’t recall her ever being burgled.

Squeeze change purse

Squeeze change purse

Fashionista meets the fashion police

Jean was also a bit of a fashionista – maybe a “victim of fashion and accessories” (with a nod to Carol Pope and Rough Trade.) Given the multi – bag design of her purses, you might think that Jean is the classic homeless “bag lady.” You would be wrong.  She did not carry an excessive number of bags, just enough to keep her money safe and she lived in her own place in the Block and in the iconic Altamont Hotel after the Block succumbed to a declining rural economy, losing its tenants, and falling into disrepair and disuse.

Jean was rarely in accordance with fashion trends and charted her own course. She loved interesting clothes and different colours. As I recall she particularly liked to wear leggings, pants, skirts, blouses, sweaters, scarves and jewelry in any combination or number, in colours that were appropriately gaudy and outrageous, incorporating dots, stripes, checks, paisley or any other pattern, the permutations and combinations of which were seemingly limitless. This was haute couture a la Jean Madill.  I am not sure where she purchased her clothes but there has to be a story there. In the end though, the colours per se were not the problem. No, it was her style and the way she wore clothes that led to most of her transgressions with the Altamont fashion police.

In the mid 1960s she caused some consternation when she began to wear maternity tops – much cooler in the summer she reasoned. Fair enough, but generally speaking unless you were pregnant, it was not acceptable to wear maternity clothes, reasoned the local fashion police and others who had influence in her life.

Hott pants

Don’t forget though that this was the late 1960s and early 1970s (I never liked the exactness of defining cultural eras according to the precise numerical value of any decade i.e., 60s or 70s) and “fashion” for teenage girls ranged from headbands to hot pants and ponchos to peasant blouses. I waffle (not the NDP waffle) back and forth as to whether fashion was always a year or two (or ten) behind in rural Manitoba compared to the big centres or if some fashions just bypassed us altogether. In any case, I recall a group of local teenage girls headed “across the line” to Fargo and Grand Forks, North Dakota for a little shopping trip one spring. The teenagers returned with peasant blouses that to the entire world looked just like maternity tops … and they weren’t pregnant … were they? … Well … I am pretty sure they weren’t…. Maybe Jean was ahead of the curve on this fashion trend…?

Fly-fishing

The fashion police worked overtime to watch Jean even as others made fashion faux pas after fashion faux pas. I have to say that the attention was not always unwarranted. Somehow this question arose in Jean’s mind: Is it acceptable for a woman to wear men’s jeans with the fly undone during the summertime?

“A lot cooler,” Jean reasoned, and she was the first to sport this fashion statement on the streets of Altamont.

“Likely true,” the norm setters (if not trend setters) replied, “but it does fly (so to speak) in the face of community standards.”

Jean, I have to agree with them on this one. It doesn’t matter who you are, you don’t go around with your fly unzipped. Why do you think men have developed surreptitious ways of checking to see if the fly is all the way up? And even then we miss it sometimes and have to be reminded by someone who walks up with a big smile on his/her face and says, “What does an airplane do?” That is your clue to surreptitiously place your hand on your belt buckle, let your fingers drop ever so slightly as to sense the openness or ‘closedness’ at the front of your pants. Some people call this manoeuvre “fly fishing.” If it is open, you abruptly execute a pirouette (if you are very adept) or a demi – rond (if you are not so adept) pulling the zipper up as you do so, your whirling body providing diversionary cover for the covert action of nimble fingers. However, if your zipper is closed, someone has played a trick on you. Embarrassing one way but funny the other way, although it is infinitely more embarrassing when they don’t tell you and you walk around for a large portion of the day with your fly wide open as if airing the family jewels. As I grow older and more forgetful, the more important it has become for Anne to take seriously her duty to give me the once up and down every time I come back from the restroom or leave the house. I believe that all men need a zipper monitor. It was recently reinforced to me that if I slip up and don’t zip up, I am left to walk around the Christmas craft show most of the afternoon looking like Baaaad Santa. Remember: “Zip it” is more than just code for “keep your mouth closed.”

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Belt Buckle commemorating Altamont’s Centennial  Photo: The PD Gardener 2016

What can we draw from these observations about fashion? Oh boy, I might find myself in trouble here. I offer some possibilities: 1) Fashion is not fashion for everyone; for one thing it has to be age appropriate. If that is the case, Jean, you are out of luck. You were on the wrong side of the age watershed for clothes that can double as maternity as well as peasant blouses. 2) Perhaps those who had influence over Jean didn’t have the same influence over teenagers. After all, the 1960s is noted for teenage rebelliousness. 3) These teens knew that their parents would disapprove of hot pants so they erred, ironically, on the conservative side by choosing hippie peasant blouses. (Is a ‘conservative hippie’ an oxymoron?) I am not sure it matters much as all the teenage girls were right in style in hot pants a year later anyway. I am glad Jean who was well into her 50s by this time never picked up the hot pants fashion. At least, I never witnessed it. I only wish that some other women of her age group were as sensible. … I am stopping this line of thinking now… in the interests of self-preservation. 4) Finally, we can conclude that the only safe way to ensure you are zipped up is to wear clothes that have no fly, giving whole new meaning to that traditional campfire song (possibly written by Pete Seeger,) “There ain’t no flies on us.” Nevertheless, it does beg the question of whether men can wear jeans that have no fly? I wonder what Jean would think?

‘Jeannie from the Block’

Let’s leave Jean’s jeans and get back to a more serious look at ‘Jeannie from the Block’ (apologies to J. Lo.) I know very little about the ownership and management of the Madill Block. It generated income I am certain but how much I cannot say and it is not a matter of great concern to me. I do believe however that there was a concerted family effort to provide Jean as much independence and the best quality of life possible, and the Block was central to that goal at least in the early days. I am pretty certain though that for a large portion of Jean’s adult life, the resources of the extended family were called upon to meet basic needs. Knowing the Madill family as well as I do assures me that Jean was in good hands.

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The Madill Block in 1982 looks much the same as it did in 1950.  Photo: S. Marshall 1982

If Jean lived in a larger urban setting, would she have fared better? Some will argue that she would have better access to programs that would meet her specific needs. Others will say that family and a close knit rural community was all that Jean needed. Of course, we will never know for certain. Was the reality of her life a success or a disaster? On balance, I would say that it was a success; it certainly wasn’t a disaster. There will never be unanimous agreement on the benefits and shortcomings of rural life but Jean spent most of her almost 101 years living among family and friends in the same small community into which she was born. There are many who will be envious of her achievement. As people approach end of life they often express a desire to return to their families and spend their final years “at home.” You know the saying “It takes a village to raise a child.” Perhaps the parallel credo in this instance is “It took a village to ensure quality of life for Jean.”

Jean’s relationship to others in the community, family or not, was a symbiotic one. In many ways, Jean was an unofficial ambassador for Altamont providing a warm and friendly greeting to all who came within its boundaries. No event held in the community was really ‘official’ until she graced it with her presence. In villages you get used to the fact that everyone knows everyone’s business. That is certainly the case in Altamont but it is not always a bad thing. It meant people were watching out for Jean, and conversely she was watching out for them. And if they weren’t watching out for each other, they were just watching each other. Jean would raise her voice if we children were stepping out of line or if other strange “doings” were in the works. She also tidied up around the village keeping common spaces free of garbage. I believe she was compensated in some manner but I don’t know how much or who paid. I do not believe that she was exploited in this arrangement.

It all seems a little idyllic and idealistic, doesn’t it? Is the secret to providing care for someone with a chronic illness or disability that simple? Family and community to the rescue! Well, not exactly, but before I digress into some political theory, it is time to stop for a moment to smell the roses.

A Rose for Jean

In my previous blog post I recommended a specific rose to represent each of the other three centenarians I have known. Keeping with that theme, Jean Madill deserves an appropriate  rose.  I thought long and hard about which rose I would chose, not just to celebrate her long life but to represent her story.  Inevitably, I gravitated toward the Hope for Humanity Rose developed at the Morden Research Station by Lynn Collicutt in 1984 in the Parkland series and introduced by Agriculture Canada in 1995 in honour of the 100th Anniversary of the founding of the Canadian Red Cross. This compact rose might be overlooked except for clusters of very dark red roses that bloom continuously in the growing season and through which she shouts, “Hey! I am here! I am beautiful!” It is a truism, I suppose, that everyone has detractors and some claim that Hope for Humanity requires extra care and pruning and is therefore “high maintenance.” Some say they hate the name … too cloying, an excess of liberal sentiment that almost makes them gag … but purchase the rose anyway for the beauty of the blooms.

In truth, neither the rose nor Jean Madill is “high maintenance.” All roses do require some regular care and pruning and Jean required familial oversight and a safe haven to thrive … and perhaps a little fashion advice and assistance with housekeeping along the way. Roses bloom with an ethereal beauty that is difficult to capture even with the latest technology. Similarly Jean Madill’s personality, nurtured by family and a caring community, carried a sparkle that shone through the gray of mental illness. 

Hope for Humanity: More than meets the eye

From the moment I first heard it, I was smitten by the phrase “Hope for Humanity.” Some would say my infatuation is just the “bleeding heart liberal” or the “social democrat” in me coming to the surface. Maybe that is the part of me that makes others gag?  Whatever, I do find the name “Hope for Humanity” thought provoking and uplifting.

We forever have Hope – a concept that I find somewhat mushy in the abstract but extremely sharp in its realism. For example, I hope for a cure for Parkinson’s disease. I carry that hope with me always even though it seems a bit vague, more like wishful thinking for something, anything, to happen. Hope is put into sharp focus though when the reality of what the fulfillment of wishes, prayers, and hopes actually means for persons living with Parkinson’s, their spouses, lovers, family, caregivers, and friends. It means a release from a complex of motor and non-motor symptoms that may range from annoying to unbearable, from predictable to unpredictable, from inconvenient to debilitating, from muscle movement irritants to excruciatingly painful cramping, from mildly intrusive anomalies to completely dominating regularities, from optimism to pessimism, and from joy to depression – all on any given day, at any given time, sometimes repeating with a relentless ebb and flow throughout every 24 hour period … forever. I witness that reality in myself and in my Parkie friends every day. When you understand the magnitude, the depth and breadth of this existence and the enormity of the joy that a cure would bring to our hearts, the relief it would bring to our minds, and the release it would bring to our muscles and brains, then Hope is no longer mushy; C’est clair!

Humanity” appears to be a straightforward concept meaning “mankind” or “humanness.” A literal interpretation of “Hope for Humanity” would be that we have “hope for mankind,” a lovely thought in its generality but it leaves too much unsaid for my liking. Ironically, I have to seek the abstract before I can understand the concreteness. Abstractly, humanity embodies qualities such as “benevolence,” “compassion,” “generosity,” “charity,” and “kindness.” You might argue that these are merely synonyms but I maintain that they form a package, reinforcing and strengthening each other to create an invincible mesh, a “social safety net,” the concrete manifestation of the altruism necessary for social and economic security.

“Social safety net”

Please excuse me as I continue my digression from roses per se to reflect on the fact that liberal democracies provide some form of “social safety net” for citizens. The term “social safety net” has many definitions ranging from minimal economic support or welfare (provided by governments, charities, informal social groups, and churches to citizens who have fallen on hard times) to the comprehensive supports provided by the modern “welfare state.” I truly dislike the term “welfare state” and I am in a mild state of shock that I have even raised it here.  I guess I would prefer ”social democratic state” in recognition that social responsibility is at its core.

In a social democratic state, the “social safety net” expands to include universal health care, unemployment insurance, public education and social services, state pension plans such as the Canada Pension Plan (CPP,) among other things. It springs from an ideology of an equal playing field to achieve success and redistribution of wealth occurs primarily through progressive taxation and access to services on the basis of need. My own personal beliefs fall very closely to these ideals. The state has a mandate to provide the structures of economic and social security for its citizens, intervening with various supports where necessary. No one should be left behind. (See Note 7)  It occurs to me that the values of a ”social democratic state” mirror the qualities in our earlier definition of “humanity” e.g., “benevolence,” “compassion,” “generosity,” “charity,” and “kindness.”

It should come as no surprise then that the “Hope for Humanity” rose has a complexity of her own being a hybrid of Prairie Princess, Morden Amorette, Morden Cardinette, R. rugosa and R. arkansana giving it a deep, almost blood red bloom to separate it from the landscape, a hardiness to cold weather, a resistance to disease, and all with a fragrance that does not overwhelm. For me, the heritage of the rose and the intricacies of “Hope” and “Humanity,” confirmed the Hope for Humanity rose as most appropriate to accompany Jean Madill.

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Two blooms on recently acquired Hope for Humanity Rose in our garden.  Photo: The PD Gardener 2016

Is family the answer?

I would not blame you for saying; “The PD Gardener has led us through a small, quite simple maze where the last turn opens into a clearing where all becomes …well … clear.” We could, quite correctly I believe, conclude that mental illness in Manitoba was not well understood at the turn of the 20th century and treatment was primitive within asylums and hospitals. This approach began to show its cracks and by mid-century treatment was shifting to community. Sadly, small communities such as Altamont (population ~200) within the Municipality of Lorne (population ~ 3,000) were unable to provide mental health and disability programs that would aid Jean’s treatment and care. Moreover, she did not have a disability that prevented her from participating in activities of daily living so there was an expectation that she could live with a certain independence outside of an institutional setting.

“Aha!” you say, “Then it is the family’s obligation and duty to care for the family member.”  You conclude that this is a story about how family provided for Jean and all was well. You are correct to a certain degree.  I believe Jean’s family did indeed ride to the rescue – out of love, duty, obligation, responsibility or whatever you might call it –  in the interest of choosing a reasonable option for Jean in a society with few options at the time. The family and many others from the community are to be commended for the role they played in Jean’s integration into community life. Altamont provided the environment Jean Madill needed and with family financial resources, the ‘safety net’ was in place.

Normally, I might be comfortable to let this observation be the end of our discussion but not today because a key question is prodding provocatively at my political core. Does it naturally follow that if we have a mental illness, disability or other chronic condition such as Parkinson’s or Alzheimer’s, then family is the preferred social unit for provision of care?

I fear that I have now opened up another can of worms and my moral and political compass must withstand intense interference as I pass through a very dangerous highly charged magnetic field.   My good friend Selma Garten states unequivocally  that the only real safety net for anyone requiring care is family.  Put bluntly, families are reservoirs of love and do not permit family members to be abandoned.  Selma speaks from much experience having cared for parents beginning at a very early age, and for her sister as they grow older. Her thoughts speak volumes to me in that one of the greatest fears I have as a PwP is the fear of abandonment as Parkinson’s advances and takes a greater and greater toll on my body and mind, as well as on the bodies and minds of those I love and who love me.  I don’t believe that this is an unreasonable fear on my part, not because I do not have faith that Anne and my family love me (I believe with all my heart that they do and I return that love unequivocally) but because the crushing weight of the care giving function in terms of time and resources may be just too much for any family to shoulder if a ‘social safety net’ is not in place to enable and assist the family to play its role over an extended period of time.

It is probably safe to say that the ideal scenario has us spending our last years with our families, secure in the knowledge that these years will be the ‘best’ years of our lives.  Equally, I believe  that it is safe to say, “That ain’t going to happen for many of us.”  I say this not because I am depressed ( I am not) or because I do not have confidence in my loved ones, but because the cards are stacked against us as we try to reach the ideal. For families to be the ideal, our society (social, political and economic life) must provide families with the capacity to meet the demand and their mandate. To date, social democratic states have not been able to meet the test of the ideal although they are working to fund and deliver “humanity” in long term care and end of life care.  Institutional care is most often described as cold and impersonal whether provided by the state, charitable organizations, or for profit entities. In 1977 Daniel Jay Baum characterized the nursing home industry as Warehouses for Death to warn us against the institutionalization of care for the elderly. The warning continued the move started in the 1950s and 1960s toward community care – not to be confused with family care. Nevertheless, recently I heard an interview on CBC Radio with Kay Parley, a psychiatric nurse who was also a patient of that era and she claims that the move to community care was not always the best move for patients – that they would have received better treatment in institutionalized settings such as mental hospitals where patients were “pushed to do things” instead of getting treatment under the “medical model” where the focus was on curing and looking after the patient.

Now 40 years later, the warning  about nursing home care is as salient as ever and few would agree that institutional care is to be preferred over care provided by families.  In fact, it is difficult to argue against family values when they are posed as compassionate and progressive ideals in contrast to institutions. But I am about to do just that. You see, the problem is that families most often can’t meet the test either.

If we assume that family is best suited to provide care for those who are mentally ill, it should also be best suited for other critical societal responsibilities. “Home schooling” would be the norm instead of public and/or private systems of daycare, kindergarten and grade school. At the opposite end of the age spectrum, elder care would be a family responsibility and government run care and private, for profit care would be least desirable. However, I have a gut feeling that some people are less likely to situate elder care in the family than they are to situate early childhood education there. Elder care has a different labour intensity and is, considering the cost of medical devices and pharmaceuticals etc., more expensive than childcare and early grade school.  The shorter duration of elder care may offset some of the cost. To be very crass about it, youth represent ‘future value’ and while the chronically ill elderly are ‘treasured’ for past contributions, the cost of care discounts their current value.

I want to be clear that I am not ruling out family as a legitimate option in individual cases. However, I am ruling out family as the primary and most effective provider for a complex set of societal needs e.g., health care, care for the mentally ill and disabled, all levels of education, unemployment assistance, pensions and retirement income, and many other responsibilities.

Even if family values and the family unit were extremely strong in our culture (and I am not sure it is that strong) the tensile strength (See Note 8) of the family cannot be infinite. There is a point at which the ability of the family to withstand stress fails. Oh sure, the strength of each family is different resulting in uncertainty and unpredictability when one or more of its members require care outside of the norm. How a society identifies and deals with situations requiring care are important questions.  Can family be the backbone for all health, and social and economic welfare or, asked slightly differently, can family be the ‘social safety net’ from first report to last resort?

Please bear with me. You see, I can’t get it out of my head that the different types of care required for the wide array of health and mental illnesses alone places huge stress on families. Over the century of Jean Madill’s life, the identification, classification, psychological and psychiatric therapies, drug therapy treatments, and social and education programs changed significantly. These changes were both qualitative and quantitative, and included new and better therapies as well as different locations for the responsibility, administration and delivery of programs. These changes require financial resources and human labour to navigate and implement successfully – resources most families do not possess. In truth, the modern family unit is not designed to accept these obligations on an individual basis never mind on a societal basis

Two critical stressors

Families are never exempt from the stresses of having to care for someone with a chronic condition.  Financial burden is one such stressor and is most acute when the family is not able cover costs of care. This burden is somewhat less if you live in a functioning “social democratic state.” The more complex the care and treatment, the more costly it is. The longer the duration of care, the greater the financial burden. The good news is that if you are very wealthy, maybe you can manage. However, it is likely the threat of bankruptcy or significant loss of wealth is omnipresent. Bankruptcy resulting from the cost of health care is common in the United States even if the family has some type of health insurance. It is not so common in Canada, which has more public and subsidized health care.

Caregiver burden is a second stressor and accrues to family member(s) over time. The longer the family member requires assistance and the more complex the care is, the greater the caregiver burden. However, the good news is that the more responsibility for care is spread across the extended family, the more caregiver burden can be ameliorated for any individual family member.

Today, families are faced with a rapidly increasing incidence of neurological conditions e.g., Alzheimer’s which is a common form of degenerative dementia and Parkinson’s disease where an estimated 50 – 80 percent of Persons with Parkinson’s (PwP) will develop Parkinson’s dementia within ten years of diagnosis. PwP will require increasing levels of care even if there is no dementia present as its advanced symptoms and the side effects of the drugs are extremely debilitating.

Usually a person newly diagnosed with Parkinson’s will have a high degree of physical and mental functionality permitting independence on matters of daily living including continuing to work in many cases. This independence diminishes as the disease advances but the life expectancy of PwP, while shorter than those without Parkinson’s, is still a good long time depending on the efficacy of the pharmaceutical treatments and physiotherapy/exercise programs followed.

While the family will remain at the core of activities of daily living and non-medical care for a lengthy period of time, there will be an increasing reliance on professional support including neurologists, family doctors, nurses, pharmacists, psychologists, psychiatrists, physiotherapists, speech pathologists, social workers, Parkinson’s organizations, exercise coaches, gym instructors, support group volunteers, and a whole raft of others. Many PwP will develop dementia and be forced onto a path of complete dependency. The cost of care and therapies increases almost exponentially as the disease progresses. If there is no extended health insurance coverage, the cost can be crippling for the family.

As Parkinson’s is a progressively degenerative disease, caregiver burden also increases as the disease progresses although not necessarily in a linear relationship with time. It may progress quickly, slowly, or not at all during some intervals, but know this; while it may take a hiatus from time to time, it will inevitably advance.

Along with that inevitability, PwP will eventually require more care than most families are capable of delivering at a cost that is much greater than most families can afford.

Very few families possess the tensile strength to fulfill the needs of family members who have significant health needs. In other words, in general the family is not well suited to be the ‘safety net of last resort.’

Long-term care is a vital component of the Ontario health care system. While most seniors can expect to reside in the community throughout their later years, a significant number will require institutional care to ensure safety and well-being. The need for long-term care services and supports is often greatest for those who are considered the most vulnerable – those who are frail, or have complex health conditions, or psychiatric disorders. (See Note 9)

What is my advice? If you believe that family is your safety net, then accumulate wealth and establish financial stability as quickly as possible and never relinquish it. At the same time get busy with making a large, cohesive, extended family, one that doesn’t suck up all your wealth. I say this tongue in cheek as liberal democracies are trending toward greater inequality between the top earners in the population and everyone else. According to Canadian Centre for Policy Alternatives researchers

The richest 1% of earners in Canada accounted for 32% of all income gains between 1997 and 2007. That is four times their share of total income gains during the 1960s (another period of rapid growth) and almost double the share of gains of the 1% during the Roaring Twenties. (See Note 10)

I wish you good luck in making the top 1 percent of earners as not everyone can or will. At the same time the nuclear family is getting smaller not larger.

The average number of children per family decreased from 2.7 in 1961 to 1.9 in 2011. During the same period, the average number of people per family declined from 3.9 in 1961 to 2.9 in 2011. (See Note 11)

I think it is clear that it is not possible for financial and caregiver stressors to be alleviated solely through generation of wealth and increasing family size.  Policies designed to redistribute wealth are essential but run counter to policies of wealth accumulation. Decreasing family size means that care is less likely to be spread across the family. Add to that an unwillingness to sacrifice earning potential i.e., to leave the labour force to provide care, means that caregiver burden will continue.

Finding The Foyer

But have I convinced you that institutions are the best alternative?  Not likely.  As I said earlier, ideally we all would like to be with loved ones until the very end … or put another way, do not want to be abandoned.)  In the end though, our receptivity to, and acceptance of institutional care probably is conditional upon specific circumstances and we must prepare ourselves to make this decision.

I believe that Jean Madill’s family came as close to meeting the tensile strength test as any family has … but Jean lived to be over 100 years old, a wonderful achievement! She outlived most of her immediate family and contemporaries placing considerable responsibility and stress on extended family.  Altamont served as the secondary safety net for most of Jean’s life and certainly played a key role in ensuring that she was able to live out her life in dignity in a personal care home in the neighbouring community of Notre Dame de Lourdes.

The Foyer Notre Dame is an accredited 60-bed personal care home that provides continuous quality client care and service in both official languages. It’s (sic) health care team is composed of physicians, nurses, a social worker, a registered psychiatric nurse, an occupational therapist, a recreation worker, a dietitian and a large support staff. Other services such as foot care, hairdressing, companion and clothing sales are available. Residents may access the spiritual care and guidance of their choice. In addition to these various services, the Foyer also operates an Alzheimer Unit. (See Note 12)

It is tempting to wax poetic and become soft and fuzzy about family values but I caution against romanticizing the role of the family.  Some think the family is, or ought to be, the safety net of last resort but the reality is that it is unlikely to be. Jean’s century long journey to The Foyer highlights the necessity for governmental programming for those who require it. When caregiver burden and financial burden are just too great for families to handle independently, it is time to find the Foyer (not just metaphorically speaking.)

We all need a Foyer in our plans. I trust that if I am compos mentis, I will know when the time is right, for me and for my family, to take appropriate action. If I am not, then I trust my family to help me find The Foyer.

Still you are correct if you think there is a ‘feel good, soft, sweet centre’ to Jean’s story but it is not found in a proof that family is the best avenue for success.  To the contrary, Jean’s case is one of the exceptions and attempts to duplicate her experience, as an example of effective social policy for mental illness, are likely to fail. Membership in family and community is contingent upon relationships and characteristics that are rarely transferable and are almost never duplicated. In other words, we can marvel that it works in one instance but we can know that it will occur only rarely, if ever, in another. It is rather like counting on successive individual mutations every single year to improve your crop yield.

Finally …

Whew! That last section was rather serious, wasn’t it?

Initially, the objective of this post was to include Jean Madill as another remarkable woman from Altamont who lived to celebrate her 100th birthday. I am fortunate to have known her and to know something of her life and circumstance.

I also wanted to address some of the realities of life for those with mental illness and disability, partly through the eyes of someone (me) with minimal awareness and understanding of mental illness never mind the care, treatment and responsibilities for costs. I have exposed my gross ignorance more than once in the previous pages.

As I reflect on my encounters with Jessica and the King of Prince Edward Island, it is clear to me that the stigma of mental illness is incredibly hard to shed because we do not speak of the mental illness or the stigma directly.  Rather,  we camouflage both in euphemisms and stereotypes that mislead us.

I am not defending my own actions or denying culpability on my part in these exchanges but they were enough to make even me (a person who desperately wanted to fit in) feel ill at ease. Any encounters with patients who were allowed to be on the mental hospital grounds were awkward to say the least, partly because we had only the perception of the mentally ill as being “crazy” to inform our expectations and behaviours.  Needless to say, the “crazy” stereotype was (and is) a very poor basis for developing awareness about mental illness … because labelling them “crazy” allowed us to take away their dignity. It is with some degree of consternation that I realize that even the way I have recounted these two stories contributes to the stigma.

I have also used some humorous stories involving Jean Madill in this account. Some may argue that these accounts contribute to the ongoing stigma of mental illness and trivialize both the condition and the lessons to be learned.  My view is that these stories are evidence of ‘humanity’ – perhaps the most valuable contribution that Jean herself brings to this discussion – illustrating that those with mental illness and chronic health conditions have a right to both dignity and quality of life. I have done my best to blend humour with eccentricity in a manner that respects those rights.

One last, less serious, question

Finally, I have one last niggling question: If I live longer, will I know more people who reach 100 years of age i.e., will I know more than the four I have already identified? Hmmm… maybe the probabilities do increase [How is that for using a probability of probabilities hedge?] but I think the more intriguing question is, “Will other people live long enough?” For those who are older than I am right now, I wish you good health so we can party at your 100th birthday and you can party at mine in time! For those who are younger than I am now, I wish you good health so that we can party at my 100th birthday before we both celebrate yours! Of course, I gratefully accept wishes for good health from everyone so that I may fulfil my end of the bargain.

 

Santé! Happy 100th Birthday everyone!

Emojie birthday image

NOTES

  1.  Playground Jungle http://playgroundjungle.com/2011/09/gene-gene-made-a-machine.html
  2. The term ”mental breakdown” seems to be synonymous with “nervous breakdown.”
  3.  Mayo Clinic http://www.mayoclinic.org/diseases-conditions/depression/expert-answers/nervous-breakdown/faq-20057830
  4. Mayo Clinic http://www.mayoclinic.org/diseases-conditions/mental-illness/basics/definition/con-20033813
  5.  Boston College Center for Psychiatric Rehabilitation https://cpr.bu.edu/resources/reasonable-accommodations/what-is-psychiatric-disability-and-mental-illness
  6. Selkirk Mental Health Centre History, From “Manitoba Insane Asylum” to “Selkirk Mental Health Centre” http://smhc-archives.com/History%20of%20SMHC.pdf http://smhc-archives.com/History%20of%20SMHC.pdf August 2009.
  7. Some political parties and movements oppose the welfare state and derisively refer to governments that provide extensive state sponsored programs and services as the “nanny state.” These groups want to minimize the role of government in the everyday lives of citizens, leaving those who are on the margins to fend for themselves, and if they fail, so be it.
  8. Defined by Collins English Dictionary as “a measure of the ability of a material to withstand a longitudinal stress, expressed as the greatest stress that the material can stand without breaking.”
  9. Canadian Mental Health Association Ontario
  10. Klein and Yalnizyan 2016
  11. Statistics Canada
  12. Southern Health Regional Health Authority

 

SOURCES

Alzheimer’s Association http://www.alz.org/alzheimers_disease_1973.asp

American Senior Communities, Mental Illness vs Dementia in the Elderly, http://www.ascseniorcare.com/mental-illness-vs-dementia-elderly/

Daniel Jay Baum, Warehouses for Death, Burns and MacEachern Ltd. 1977.

The Beatles, When I’m 64

Bell Let’s Talk Day 2016, http://letstalk.bell.ca/en/

Canadian Mental Health Association, Ontario http://ontario.cmha.ca/network/minding-our-elders-mental-health-in-long-term-care/

CBC Radio, Interview of 93-year-old former psychiatric patient and nurse on lessons from LSD, Tuesday June 14, 2016

The Clinique: a monthly abstract of the clinics and of the proceedings of the Clinical Society of the Hahnemann Hospital of Chicago, 1923.

Canadian Rose Society  http://canadianrosesociety.org/CRSMembers/Resources/RosePhotos/ParklandRoses/tabid/71/Default.aspx

Collins English Dictionary

Dutch Growers Saskatoon http://plants.dutchgrowers.ca/11040002/Plant/1333/Hope_for_Humanity_Rose

Diane Franklin, Dementia and Mental Illness: Is Dementia a Psychiatric Disorder? Our Parents, March 26, 2015 https://www.ourparents.com/care-topics/2015/03/26/dementia-and-mental-illness-is-dementia-a-psychiatric-disorder/

Klein, Seth and Armine Yalnizyan, Better is Always Possible: A Federal Plan to Tackle

Poverty and Inequality, CCPA Alternative Federal Budget Technical Paper, February 2016. https://www.policyalternatives.ca/publications/reports/better-always-possible

Parliament of Canada, Interim Report of The Standing Senate Committee On Social Affairs, Science And Technology Report 1. The Honourable Michael J.L.Kirby, Chair. The Honourable Wilbert Joseph Keon, Deputy Chair. November 2004

Parliament of Canada Mental Health, Mental Illness and Addiction: Overview of Policies and Programs in Canada Report 1 http://www.parl.gc.ca/content/sen/committee/381/soci/rep/report1/repintnov04vol1part3-e.htm

Playground Jungle http://playgroundjungle.com/2011/09/gene-gene-made-a-machine.html

Selkirk Mental Health Centre History, From “Manitoba Insane Asylum” to “Selkirk Mental Health Centre” http://smhc-archives.com/History%20of%20SMHC.pdf http://smhc-archives.com/History%20of%20SMHC.pdf August 2009.

Southern Health Regional Health Authority, Manitoba http://www.southernhealth.ca/healthsite.php?id=147

Southern Health Regional Health Authority, Manitoba, Annual Report, 2014. http://www.southernhealth.ca/data/publications/35/2014-15%20Annual%20Report.pdf

Statistics Canada, Fifty years of families in Canada: 1961 to 2011

Nicole Zahradnik, Minding Our Elders: Mental Health in Long-Term Care
Network, Winter 2007, Ontario, Canadian Mental Health Association, http://ontario.cmha.ca/network/minding-our-elders-mental-health-in-long-term-care/

© Stan Marshall (The PD Gardener) 2016.