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.
  • Stan bruising 2 IMG_5462

    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.

    3 must read books IMG_5284

    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)

 

 

In the Parkinson’s Garden: Ali, Michael J., and me

I am not sure what led me to consider writing a piece on humour and Parkinson’s Disease (PD.) On the surface, there does not seem to be much funny about Parkinson’s. I am not a particularly funny guy and I do not see myself as a humourist. My children may think I am funny (bless them) or more likely, that I have a weird sense of humour and that I am funny/strange (hey, in a good way.) Other than a few impromptu occasions when I played “Stanta” at the office Holiday lunch where I improvised a few in-house comments, I have avoided putting my mind to comedic endeavours. I do not write jokes, nor do I tell jokes particularly well. In fact, I barely remember any of the jokes I have heard over the past 60+ years and there have been tens of thousands of them.

Yet, here I am, sitting at the keyboard intent on writing about humour and Parkinson’s. Others have tackled this and done a far better job of it than I am likely to do (see Yuma Bev at http://www.parkinsonshumor.blogspot.com.) Perhaps, I am being deluded by dementia often associated with PD or maybe I have a propensity to achieve failure. Am I rising to the level of my own incompetence? [Oops, I almost typed “incontinence” instead of “incompetence.” That may well seep into my blog at some point, but not quite yet.]

Undoubtedly, a sense of humour is both learned and inherited. My father had a wry sense of humour and there are others in the extended family (living and dead) that I consider to have somewhat quirky outlooks on life. I confess though that the humour of the latter never developed much after their demise, but interestingly, the richness of their life stories did. Funny that.

Before I go too far, I think it is important to distinguish between humour and comedy. At the risk of appearing a bit “researchy,” and you know that I try to avoid rigourous research in this blog as much as possible, (some of my professors have told me I tried to do that in my academic work as well,) it is sometimes necessary to interject some sociological order into all universes. Dick Gregory, renowned American comedian and civil rights activist, described humour as everyday situations that happened in everyday life and relayed to others in informal settings. By contrast, comedy was paid work where individuals were divided into audience and performer – and the performer better have his/her comedic timing down pat.  With that in mind, I think that I am contemplating humour as opposed to comedy in this piece. But I do have PD and may appear to be confused, even if I am not.  Please read on to find out for certain.

I do not remember my paternal grandmother (Maud) well but my most explicit memories of her are from my childhood and teen years. (For the record, she was every bit the horticulturist that my grandfather was and I shall explore her talents more in later posts.) She always seemed to be a stern, straight-laced person, not particularly the cuddly type. Maybe being the mother of five sons had something to do with that. Nevertheless, I knew her to have quite a soft side. She was not above pulling one’s leg with some exaggeration or story of life. But she had one serious downfall – when she was engaged in some tomfoolery, she had an undeniable twinkle in her eyes. You only had to look at her straight on to learn whether what she was saying or doing was fact or fiction.

Maud "Granny" Marshall

Maud “Granny” Marshall   Photo: unknown

I inherited that same trait and it has proved to be my downfall on many occasions as I tried to pull off some spoof or other, or even, dare I say it, lie about something. My maternal grandfather (“Grampa Bill”) also possessed a well-developed sense of humour with no ability to conceal it so I am doubly cursed with this weakness. Those who know this fact quickly find me out in any ploy.  Genetically speaking, both sides of the family ganged up on me – for humour at least, and who knows about the PD?

Personifying Dick Gregory’s juxtaposition of humour with comedy, Grampa Bill also established himself as a performer – not so much paid as rewarded – in various social settings such as Legion Halls and gatherings of army buddies. He maintained a constant patter of jokes coupled with a long playlist of old standards and comedic ditties played on an old squeezebox. I did not inherit this latter talent but can only surmise that some residual features of it still percolate through my personality from time to time.

My children have grown accustomed to my (often) sad attempts at humour although it does create some genuinely funny and absurd conversations where we riff off one another with bad puns and malapropisms.  It is particularly fun in this electronic age of text messaging. They speak openly in front of me, as if I am not present, of their personal concerns about having my sense of humour. I am afraid that they have good reason but at least they have some early warning.  My greatest wish is that they inherit my sense of humour such as it is … and not any genetic propensity for Parkinson’s.

Humour can be learned to an extent but it can’t be forced. If you have ever witnessed someone who is unfunny trying to be funny, you know that it must come from deep inside the genetic code. I can hear my ancestors as I start into a conversation that has some potential to be funny. Hmmm … psychosis and hallucinations (both visual and auditory) are routinely part of the lives of approximately 25% of PwP, usually later in the progress of the disease.  There are several potential triggers for hallucinations but these are best left to another time. This is an aspect of PD that has not visited me yet. I am not sure it ever will but I can’t say that I am looking forward to it if it does.  Still, I don’t think that retrieving sub-conscious memories of past relatives constitute hallucinations but … I shall have to be careful about what I say here ….

What I am about to write now would shock my grandmother and I doubt that there would be a twinkle in her eye – more likely she would have some sharp words uttered through pursed thin lips. Nevertheless, I shall charge ahead in some perceived need to edify myself about the fact that comedy and humour may take different forms even if the situation is essentially the same.

Consider the following scenario: you find yourself (assuming you are male) between Muhammad Ali and Michael J. Fox at the urinals at a baseball game. (If you are female, make any assumptions you wish.) By the way, I have taken the fundamental premise of this scenario from a real joke circulating on the Internet.

A comedian or comedy writer is likely the one who thought up this scenario and in its telling will add some quick repartee about having to be careful with all that shaking going on (Parkinson’s you know, wink, wink.) Regardless of how much beer or other liquid has been consumed by any of the parties involved, the interaction (and the joke) is over quickly.

Others will also have contemplated this scenario but will have presaged it with considerable verbiage around never having met Muhammad Ali and being disappointed that the only celebrity in sight at the game played in Los Angeles has been Michael J. Fox who was almost overlooked, as he was so short. The writer opines that he paid a bundle for the tickets because he wanted to see some celebrities. Late in the game he makes a trip to the bathroom and, lo and behold, he sees Muhammad Ali and is so overcome with excitement that he extends his hand to shake Ali’s while he is at the urinal. Of course this is a dodgy proposition at the best of times. The comic then clumsily mutters something about being glad he did not end up between Ali and Fox.  [shakey, Parkinson’s, yada yada.]  The joke ends up in essentially the same place.

However, let’s assume that you are a PwP and further assume that you have a sense of humour.  PD humour is largely self-deprecating and based on our personal, lived experience.  It transpires that you actually do end up, by pure happenstance, at the urinals in a real life situation between Michael J. Fox and Muhammad Ali. Wow! The humour is in the account of the meeting. After all, whom do you pretend not to glance at first? Add your own Parkinson’s shakiness into the equation and suddenly Ali and Fox have something to fear as well. Further, the fact that Muhammad Ali is 6 ft. 3 in. and Michael J. Fox is 5 ft. 4 in. provides all kinds of potential for quips about being drenched from head to toe, etc.  But what separates this PwP account of the meeting at the urinals from others is that it is experiential and the humour flows from that fact. There may well have been an exchange between Ali and Fox as they know one another; and you, yourself, may have participated in the exchange. The humour is in the telling of a true story, but with just enough embellishment to make the listener check to see if there is a twinkle in your eye … or not.

But there is nothing funny about Parkinson’s Disease, is there?  It is a disease to be feared and among the last words you ever want to hear from a neurologist are, “you have Parkinson’s.”  However, my neurologist did say to me recently, “you have six months left.”  It turned out that he was referring to how long my current prescription for L-dopa would last. I never really thought I only had six months left to live, but it was funny to hear it, as he said it. Why is that?

But what are you going to do, when life deals you a lousy hand? Oh you know, there are all the usual motivational sayings and/or lyrics from uplifting songs: “When life gives you lemons, make lemonade.” “Just pick yourself up, dust yourself off and start all over again.” “Dig down deep and fight back.” They don’t really work for me.

I am not trying to downplay the importance of motivational and inspirational sayings, or soul-strengthening passages from the texts of various religions. They are important to each of us in how we face PD and its intractable march to destroy our brains and bodies. For me, humour has its own inspiration and is more than a coping mechanism; it is one of the essential ingredients for quality of life and survival.

I have great admiration for the Michael J Fox show and everyone involved with it. It is difficult to write Parkinson’s humor – too obvious and it appears that you are mocking those who have PD – too subtle and only those who know the details of Parkinson’s will get it. There is a need to strike a balance between the two.  As a PwP, I truly appreciate the subtle humour that makes me feel I am an “insider,” privy to information that only very few others have. But then again, I want some things to be really obvious, front and centre; to raise the profile of PD, providing education and awareness to the ravages of this very unfunny disease; to drive home the points that more research and funding is required to find a cure; to impress that economic, social and health policy need to be aligned to provide quality of life so that dignity is not the final victim of PD.

Do I think that the Michael J. Fox Show is the best comedy show on TV? No, but I do laugh out loud more than three times each week which is better than the bar I set for many other shows.

So, what if I met Michael J. Fox and Muhammad Ali in my garden? Ha!  That is a scenario even more unlikely than my meeting them at the urinals. But if I did meet them in my garden, we would hear Anne shrieking: “ Watch where you guys are treading! There are tender young seedlings under there you know!” I have heard this admonition many, many times as I lurch around the garden like Young Frankenstein when my meds are wearing off.  Intellectually, I know what is happening and I look down in a sort of “out of body” experience to see my feet heading wherever they feel like, while my mind is stepping as delicately as possible. I have come to enjoy “lurching”, at which I am getting ever better.  If you haven’t tried it, maybe you should. It is good exercise with those long strides that force you to concentrate to avoid pitching head over teakettle into the shrubbery.

The challenge of the garden wall   photo: S. Marshall

The challenge of the garden wall    Photo: S. Marshall

I often find myself focusing on the 8-inch garden wall in front of me as if I were about to attack the balance beam at an international gymnastics competition. If I can reach it without damaging some baby brown-eyed Susan’s, I will have exited the garden with minimal damage. Wait, don’t they grow like weeds anyway? Why am I so concerned about them? I tell myself to hell with the brown-eyed Susan’s – just get one foot on the wall and then step down to the path without gaining any extra momentum. If I lose the battle of agility to the one of speed, I will end up crossing the path, crashing through the Monarda (Marshall’s Delight no less) and pitching into the Rosa Rugosa. What follows will be the ignominy of a cross-examination as to why I smell vaguely of spicy herbal tea, have scratches all over my hands and arms, and rose petals in my hair.  

It is at this point that I call on “Brother John” (Anne’s brother) as a role model for balance success.  I am much indebted to Brother John for a classic image of him raising his arms in triumph as he executed a perfect landing, after launching himself from his sitting position on the couch to a standing position directly in front of the couch. With that portrait of success etched into my dopamine deprived brain, I initiate a long graceful stride to the wall and then a split second later, another one to the path with my arms high in the air in the victory position – the audience roaring its approval and the announcer shouting, “Wow!  He really stuck that landing.” I don’t believe it until I check myself for rose thorns and/or blood trickling down my bare arms.  

I do sometimes fantasize that Ali, Michael J. and I are in the garden. I am pretty sure this is a fantasy and not a hallucination.  The collateral damage would be considerable but it would be the best and probably funniest day of my life! Ali would be bobbing and weaving, playing rope-a-dope against the fence with his head just visible among the Joe Pye weed, Jerusalem Artichoke, and Rudbeckia quoting poetry: “… float like a butterfly and sting like a bee,” appropriate for any self respecting perennial garden. Michael J. would be channeling Alex Keaton, vainly waving his arms about in the shorter brown-eyed Susan’s and Echinacea to convince us that this waste of space could be put to better use as a condo development. Or perhaps MJF would provide a private re-enactment of Marty McFly and the famous guitar performance of “Johnny B Good” in Back to the Future, only this time from the “Gardens.”  In any case, seedlings and full-grown plants stand directly in harm’s path.

 

Is Ali bobbing and weaving with Joe Pye, Jerusalem Artichoke and Rudbeckia?  Photo: S. Marshall

Is Ali bobbing and weaving with Joe Pye among the Jerusalem Artichoke and Rudbeckia? Photo: S. Marshall

But back to reality. My response to Anne’s shrieks to step carefully is invariably the same, “if you want a gardener with PD to clean up this mess of weeds, you have to expect some collateral damage! I am not called The PD Gardener for nothing, you know.”  That, along with a well-timed diversionary question about the new peony in a bed I haven’t yet tramped across, usually buys me enough time to escape the scene of the carnage.

There is much more to be said about humour, gardens and Parkinson’s, and all the permutations and combinations cannot be addressed in one post. I was going to say “short post” but you would snicker at that characterization. I shall return in future ramblings to chat about the Parkinson’s world, from the inside out.

In the meantime, I have learned that gardens, for the most part, recover from unintentional Parkinson’s invasions. And the benefit to a PwP for having the opportunity “to trod” in such gardens is immeasurable. Any sacrifices the flora has made are returned more than a hundred fold to the maintenance of a healthy PwP outlook on life. I have also learned that finding humour in what we are and what we do is critical to understanding that, while not everything in life is what we would wish, when one is in the garden, alone or with loved ones and friends, life is damn near perfect.   

Maneuvering in this garden is a challenge!  Photo: S. Marshall

This garden would be perfect if I hadn’t stepped on the seedlings!   Photo: S. Marshall