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)

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

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

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

Question: Are there any songs about bleak towns?

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

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

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

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

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

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

Question: What happened anyway?

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

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

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

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

(749 words)

© Stan Marshall (The PD Gardener) 2017

LEARNING TO WALK AGAIN … OR … READING BETWEEN THE LINES

Learning To Walk Again … Or … Reading Between The Lines

Author’s foreword

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

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

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

PERSON WITH PARKINSON’S RENDERED IMMOBILE

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

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

Looking for answers (in all the wrong places?) 

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

and

Knee bone connected to the thigh bone

Thigh bone connected to the hip bone

Hip bone connected to the back bone (Endnote 2)

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

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

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

Symptoms defy explanation say medical specialists

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

The new normal 

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

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

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

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

End Notes

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

© Stan Marshall (The PD Gardener) 2016

Going Home with Parkinson’s: Always a few surprises

 

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

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

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

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

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

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

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

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

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

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

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

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

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

So, what surprised me?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Parkinson’s: Identity Crisis? Who? Me?

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

Are we human or are we dancer?

My sign is vital and my hands are cold

And I’m on my knees looking for the answer

Are we human or are we dancer?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Or

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

You decide.

Afterword

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

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