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!
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.
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.
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.
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.
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
Avril Lavigne, Sk8ter Boi, 2002
Dance for PD
Dance for Parkinson’s Project
Dancing with Parkinson’s
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
Linda Ronstadt and the Stone Poneys, Different Drum, 1967
National Ballet School
The School of Dance
© Stan Marshall (The PD Gardener)