Parkinson’s: Identity Crisis? Who? Me?

Preamble

I recently published a fairly blunt article, “Why I think  Parkinson’s is a Soul Sucking Disease.”  That article has had well in excess of 1,000 hits since December 1, 2017. I have also received numerous comments, mostly favourable, although some believe that I take an overly negative approach.  I am currently working on a follow up post tentatively entitled, “How I Live with Parkinson’s, a Soul Sucking Disease.”

In the course of researching this next post, it became evident to me once again that Persons with Parkinson’s (PwP) must come to grips with their relationship to Parkinson’s if we are to face the challenges effectively.  Do we accept it? Do we deny it? Is there some middle ground where our identity is not integrally related to Parkinson’s one way or the other?  On October 7, 2013 I considered these very questions in a post called, Parkinson’s: Identity Crisis? Who? Me? 

More than four years have passed and I remain so very much in sync with my thinking at that time that I re-post the article below as background reading for my forthcoming article, “How I Live with Parkinson’s, a  Soul Sucking Disease.”  

Encore post: Parkinson’s: Identity Crisis? Who? Me?  (originally published October 7, 2013)

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

Are we human or are we dancer?

My sign is vital and my hands are cold

And I’m on my knees looking for the answer

Are we human or are we dancer?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Or

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

You decide.

Afterword

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

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

 

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WHY I THINK PARKINSON’S IS A SOUL SUCKING DISEASE

WHY I THINK PARKINSON’S IS A SOUL SUCKING DISEASE

Feature photo: Tulips are emblematic of Parkinson’s. Here the tulips are nicely highlighted by cherry blossoms. Photo: S. Marshall

In contemporary slang, “soul sucking” often means something excruciatingly tedious and depressing. I find it a little strange that soul sucking, an action that should strike at the very core of our intellectual, emotional, and spiritual being (our soul), should be defined so cavalierly. Is soul sucking merely hyperbole to describe anything that does not excite us?

There is a second definition which hits a little closer to the mark, “something that takes from you mentally, emotionally, and/or spiritually and gives nothing in return.”  I think that soul sucking is more than a feeling, wrenching as it does something violently from the human psyche. Such a feat must require unfathomable power or even a higher order of life. What features of Parkinson’s could possibly be so destructive of one’s soul as to merit such a designation?

I am a Person living with Parkinson’s (PwP). Today, I will outline reasons why I think that Parkinson’s disease (PD) in its most pernicious form is ‘soul sucking’.

Warning: Some will say I am doing a disservice to the Parkinson’s community in this post – that I am too pessimistic – fomenting fear and causing depression. Far from it. I am merely saying to Persons with Parkinson’s and their families: Wake up! PwP must draw on their physical and emotional strength many times each and every day, at a moment’s notice and often in situations requiring every ounce of their reserves.

The trajectory of Parkinson’s is not pretty but we must not put our heads in the sand. We must know the grim realities if we are to face them effectively.

Caveat: The symptoms of Parkinson’s are not identical for everyone nor does its progression follow a predictable pattern for every case. In other words, not every PwP will experience each of the situations I outline below – but don’t be too quick to assume that they face only a few or that the few challenges they do face are negligible and/or manageable.

Why do I think that Parkinson’s is a soul sucking disease?

How many reasons do you need? My initial intention was to list the 10 top reasons but the list rapidly outstripped that number and I could not find good reason to edit these down to just ten.  I could have continued adding more but to maintain my sanity (and likely yours) I invoked closure on the list as follows:

  • PD robs you of intimacy. Parkinson’s renders even the simplest act of tenderness such as rolling over in bed and wrapping your arm around your lover almost impossible. Physiotherapy and exercise can help you forestall this problem but it often shows up long, long before you are diagnosed with Parkinson’s. The ability to be loving and tender in a physically effortless way – free from restriction and later free from tremor and uncontrollable muscle movements – are probably among the most disconcerting things I have ever faced. I resist with all my being the seemingly inevitable progression where my wife will identify more with “caregiver” than “lover”.
  • PD robs you independence. Parkinson’s is a progressively degenerative neurological disease that will gradually and at its own pace cause you to suffer from periods when you are no longer completely in control of your own muscles. Bradykinesia (slowness) and rigidity mean you have great difficulty walking or doing the most minor tasks of daily living. You will require care sooner than you think.
  • PD robs you of dignity and self – worth. Incontinence and/or constipation and/or diarrhea mean that you often are at the mercy of bodily functions that are no longer predictable or easily contained even with modern day sanitary conveniences. You will find your dignity under attack even when with your loved ones.
  • PD saps your body of its strength, no matter how strong you may be. You will suffer through periods when even trying to get out from under one thin sheet on the bed is impossible. You will look strong and healthy on the treadmill at 9 a.m. but at 4 p.m. you may not be able to toilet yourself.
  • Because Parkinson’s symptoms can arrive at a moment’s notice and leave just as quickly, people who don’t know any better will doubt your veracity; they will think you are faking it.
  • PD plays havoc with your emotions. It doesn’t matter whether it is the disease itself or the future you face that causes the volatile emotions, you will find yourself crying at inopportune and inappropriate times. I cry at serious and frivolous things equally. Hilariously, innocuous commercials on TV often trigger tears for me.
  • PD places a burden upon those for whom you care the most. When first diagnosed you will say that not much will change at work or at home. Wrong. Changes happen slowly at first but you will feel the need for help, for care. Your family, spouse, and friends will gradually start picking up the pieces you can no longer handle. As much as they will deny it, a burden (psychological, social, financial, economic, spiritual, temporal) does pass to them in that inevitable and unpredictable way that Parkinson’s has.
  • PD places you at risk for discrimination, intended and/or unintended. In effect you are disabled. Young onset PwP will face challenges in the workplace as well as in their families. Your condition will rule out life insurance and your children may find it impossible to arrange their economic affairs because they share your genes. Last year Canada was the last G7 nation to pass legislation prohibiting “genetic discrimination”. It will take some time for litigation to work its way through the courts to see just how effective that legislation actually is.
  • PD shortens life expectancy. Even though the studies are inconclusive as to how much some estimate it to be three to four years difference, and if you have Parkinson’s related dementia, lifespan is considerably shorter than that figure.
  • There is an oft repeated saying that “You don’t die from Parkinson’s; you die with Parkinson’s” The implication is that we should not fear death at its hands. As always there is a kernel of truth in such homilies but, equally as always, there is room for debate. If Parkinson’s causes you to have a problem swallowing and you choke on your food or aspirate your medication and develop pneumonia, is Parkinson’s culpable? If you have Parkinson’s related balance issues and fall from a ladder and die (it happens), did you die from the fall or is Parkinson’s culpable? If you have freezing of your gait and freeze in the middle of a high traffic area road, what is the cause of death? If you are a PwP who becomes depressive and commits suicide, is it Parkinson’s related? I think it is fair to ask the question of whether Parkinson’s should be exonerated in every instance. Perhaps, the “old saying” is founded on a statistical artifact rooted in the way cause of death is recorded?
  • It is a known fact that as you get older you become more at risk for falls. If you have Parkinson’s that risk increases drastically as most PwP have balance issues of some kind. Approximately 60 % of PwP will experience a fall and 39% will have recurrent falls. The most common injuries are fractures and 76% of PwP who fall require health services. Those numbers are quite high. The culprit may be faulty proprioception (the manner in which your body perceives itself to be in space) or fainting from Parkinson’s related hypotension (low blood pressure).  You will grow accustomed to attending meetings where many of your PwP friends sport cuts and bruises from falls.  I have not fallen yet (touch wood) but I live in fear of falling every day.
  • Excruciating pain can accompany PD even though many people think Parkinson’s to be a painless and mildly irritating tremor. Let me disabuse you of that notion in the strongest possible terms. Cramps, especially in feet, toes, and legs are very common and can strike at any moment without warning. Dystonia is a frequent travelling partner of Parkinson’s and its constant contractions of muscles causes extreme pain and muscle fatigue. I once experienced a muscle/tendon contraction in my left leg from my groin to the tip my big toe for 18 consecutive hours! It felt as if a piano wire was stretching through that length and it was being pulled so tightly that it was singing, buzzing or humming with pain. I have had severe bruising in my hamstrings from very minor leg movements.
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    Honestly, I was only trying to get out of bed

    PD has no known cause and there is no cure. Dr. James Parkinson wrote his ground breaking essay The Shaking Palsy in 1817, two hundred  years ago! Over those years we have found neither cause nor cure. This fact alone makes it difficult to keep hope alive. Personally, I do not expect that a cure will be found in my lifetime.

  • After you are diagnosed with Parkinson’s you will ask the question: “why me?” Not surprisingly you will be angry and you will think of everything and anything that may provide an answer. Genetics? Possibly. You will begin to check your family history. Environment? Possibly.  Studies indicate that certain genetic codes are triggers for Parkinson’s upon contact with certain elements in the environment e.g., pesticides.  You will research the many connnections– exposure to pesticides, insecticides, herbicides and fungicides; the presence of metals and chemicals in the well water and water table; or exposure to gasoline fumes in enclosed spaces such as farm equipment sheds or machine manufacturing and repair industries. You will expend much energy being angry and you will worry about your family if they live in the same environment as you live. Your angst may cause you to have other health concerns as you carry on a fruitless search for the reason(s) you have PD.

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    Three must read books

  • PwP will be bombarded with missives, advice and solicitations from purveyors of dreams. These modern day snake oil salesmen have an elixir, a regimen, a diet, an exercise, a meditation technique, and any number of other remedies for Parkinson’s. They all swear that their discovery arrests the progress of Parkinson’s, if not to cure it totally and absolutely.  These dreams are but chimera, a promise that cannot be delivered.  To be fair not everyone will be a charlatan and some of the approaches do help our lives with Parkinson’s to be of improved quality but know this: there is no cure … yet. Caveat emptor applies to any forays you make into the world of those who sell the ‘elixirs’ and cures.
  • Many people think that PD can be easily managed with proper medication. They are wrong. While PD can be managed, it is not done easily. There are significant periods of time when you are in an “off” period with your drugs. They simply do not work with 100 percent accuracy and the timing of “on” and “off” periods may be erratic. The gold standard treatment for Parkinson’s is still a drug called levodopa which was developed over 50 years ago. There are other pharmaceuticals and drug delivery systems that can provide some relief and give the semblance of a decent quality of life for PwP but the public rarely sees the private anguish of the PwP driven underground by pain, involuntary muscle movements, and embarrassing non-motor symptoms. You will find yourself in successive and continual rounds of adjustments with your drugs. Be aware that there is no consensus among neurologists as to the most efficacious drug therapy or therapies.
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    My Parkie meds, clockwise from top: rasagoline, levadopa/carbidopa, pregablin, rotigotine patch

    You will become more knowledgeable than most  of your family and friends about the wide range of pharmaceuticals used to treat Parkinson’s. You will research and search for the most effective type with optimum dosage and timing. You will become fanatical about the possible interactions your meds may have with other drugs. You will seek advice from other PwP, pharmacists, dieticians, and other health professionals about the absorption rates of medications following and before the ingestion of certain foods e.g., protein. You will spend inordinate amounts of time and energy on trying to perfect your medication schedule such that it coordinates with activities in your everyday life e.g., meal times, or vice versa.

  • You will become conversant with surgical options for treatment of PD e.g., Deep Brain Stimulation (DBS) and ultrasound stimulation which can change, alleviate, and eliminate severe symptoms enhancing the PwP’s quality of life. However, you will also learn that it has limitations; not all PwP are candidates for such surgery and, contrary to reports in the popular media, it is not a cure. It does not stop the advancement of Parkinson’s. It will enhance your quality of life markedly but you will still have some symptoms and problems e.g., speech issues. You will know what a Duodopa pump is and why that change in the delivery of medications is so effective for some PwP. You will know how much it costs and how important it is to lobby for public coverage. The same goes for “the patch” – rotigotine delivered through the skin much like the nicotine patch to bypass the blood/brain barrier differently. At the same time you are studying and understanding these complex details becoming a lay expert in effect, others incongruously are watching and questioning your mental capacity because you walk slowly or have a Parkinson’s related speech problem.IMG_8068Sometimes life may appear very bleak.            Photo: S. Marshall
  • There is a significant probability that you will suffer from Parkinson’s related depression with clinical symptoms i.e., more than just “feeling down or low.” The same pathways and neurons in the substantia nigra area of the brain produce dopamine (regulating movement) and serotonin (regulating mood). When those neurons die, we stop producing enough dopamine and serotonin resulting in depression for many PwP.
  • About 40% of PwP suffer from increased anxiety, which may result in depression as described in the previous point. More likely though it will trigger involuntary muscle movements (sometimes painful if they develop into cramps) which are difficult or impossible to control. It is as if signals from the brain are hi-jacked and sent erroneously to muscles in arms, hands, legs, and feet. Feelings of anxiety can arise from the most innocuous situations e.g., meeting friends for lunch, as it did for me this week, where I developed severe dyskinesia – like movements which became painful cramps in my legs – all in the space of about 10 minutes. Anxiety for many people manifests itself as increased tremor.
  • Estimates are  that 50% of PwP have hallucinations; they see things that aren’t there. These hallucinations may be from the Parkinson’s itself or from medications. The suggestion that I may develop hallucinations is so powerful that sometimes I look at things that are there and wonder if  they are not. It often takes several seconds to make a determination. Of course, once you admit to hallucinations, it is but a short leap for others to consider you cognitively impaired.
  • I experience vision issues. I see double … well … not exactly double but weird kind of double where there is a vague outline of overlap but not exactly side by side.  Neurologists an optometrists are not particularly interested, or knowledgeable, about vision issues so it remains unresolved.  It is complicated by the fact that I wear progressive lens glasses already and perhaps the prescription needs adjusting. In any case, vision problems are a real but neglected part of PD.
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    Sometimes I wonder why I can’t see properly. 

    Approximately 90% of all PwP experience some reduced intelligibility of speech over the course of the disease. Your voice may become soft and difficult to hear and your speaking rate may slow down. These changes have some obvious consequences e.g., it is harder to get a word in edge-wise in normal conversation as people are not that considerate about letting others speak. However, of greater concern is the perception that PwP with speech issues are either cognitively impaired or socially aloof. In fact, PwP do become less motivated to participate because they find that others either cut them off mid – sentence or discount the value of what they say. It is disheartening and hurtful to realize that your voice is not only reduced in volume, it is at the same time reduced in weight.

  • Approximately 50% of PwP develop difficulties swallowing. It should go without saying that this symptom is dangerous as you may choke, develop pneumonia or become malnourished or dehydrated. You will need the professional assistance of dysphagia specialists to treat this condition.
  • You will begin to understand that the concept of “progressively degenerative neurological disease” is just a fancy way of saying, “It ain’t going to get better; it is only going to get worse”. The literature says that PwP can expect to live another 20 to 24 years (assuming no dementia) after diagnosis during which time the disease will progress and your condition will deteriorate. You will spend the last few years of your life in a care facility and hopefully you, your family and the state have provided enough economic security to assure you comfort and dignity.
  • Within five years of your diagnosis you personally will experience many of the above symptoms and situations. You will meet many PwP facing other situations you are not.  You will come to the realization that many of your symptoms have been with you for a long time (maybe ten years of more) before your official diagnosis. At this point it dawns on you that your disease has advanced much further than you thought at the time of your official diagnosis.
  • Your obituary will say “ … after a long and courageous struggle with Parkinson’s …” or words to that effect. Most acquaintances will read these eight words with sympathy but Persons with Parkinson’s and their families will silently and reverently acknowledge you as a champion – someone who defied a soul sucking disease to reach your living age.

Afterword

I have covered a lot of territory in listing the many features of Parkinson’s that I believe render it to the category of ‘soul sucking’.

You may think that I am overly pessimistic and not appreciative of the research, development and delivery of the many therapies that provide a better quality of life for PwP. My rejoinder is that such therapies exist precisely because Parkinson’s is soul sucking. A recent report published in the Journal of the American Medical Association (JAMA, see https://www.urmc.rochester.edu/news/story/5184/parkinsons-disease-a-looming-pandemic.aspx) postulates that the incidence of Parkinson’s will reach pandemic proportions within the next 20 years. It states quite bluntly that the road to a cure is for the Parkinson’s community, especially PwP and families, to become aggressively vocal and DEMAND better treatments and a cure, following the precedent established by HIV/AIDS sufferers.

My hope is that my observations add weight to the discourse on the severity of Parkinson’s; it is more than just tremor. It is soul sucking!

If you think that I am wrong or that I have misrepresented any aspect of Parkinson’s symptoms, of Persons with Parkinson’s and their families, or of the professionals who work diligently to improve our quality of life, please speak up. Send me a comment at the bottom of this blog. Write a rejoinder in your own blog. The discussion will shed much needed light on the dark corners of Parkinson’s.

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Rosa x Hope for Humanity  Photo: S. Marshall

One Final Note

It is my intention to write a companion blog piece that is tentatively entitled: WAYS TO LIVE WITH PARKINSON’S, A SOUL SUCKING DISEASE. Watch for it.

© Stan Marshall (The PD Gardener 2017)

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!

School of Dance Parkinsons Notice 2018 1

Our 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)

 

 

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 Posts No. 3 : My Answers

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

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

Question: Are there any songs about bleak towns?

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

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

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

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

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

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

Question: What happened anyway?

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

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

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

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

(749 words)

© Stan Marshall (The PD Gardener) 2017

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!