Escape, expand, embrace: the transformational lived experience of rediscovering the self and the other while dancing with Parkinson’s or Multiple Sclerosis

Figures & data

Table 1. Participation matrix.

	Shaping	Generating	Sensemaking	Sharing
Anna	Writing grant proposal; formulating and developing design; conducting pilot interviews	Conducting interviews, recording observations; sharing personal experience	Formal analysis of English language data; member checking; drawing mind maps; feedback on artistic interpretation	Writing first draft of manuscript and plain language summary; dissemination
Tineke	Supervision, editing grant proposal; formulating and developing design; building team of co-researchers	Supervision, providing training materials and feedback on generated material	Supervision of analysis; drawing from extensive knowledge of relevant literature	Editing manuscript; dissemination
Rob	Partner, thinking along with design; building team of co-researchers; supporting first author network in NL	N/A	N/A	N/A
Hannie	Formulating and developing design and interview topic list	Conducting interviews, recording observations; sharing personal experience	Analysis in duo with co-researchers; generating themes and drawing mind maps	Reviewing and reacting to manuscript drafts; writing about experience; dissemination
Christine	Formulating and developing design and interview topic list	Sharing personal experience in conversation and writing	Analysis in duo with co-researchers; generating themes and reacting to mind maps	Reviewing and reacting to article drafts; writing about experience; dissemination
Natalie	Thinking along with design	Recording observations	Joining analysis discussion sessions	Editing article drafts; translation of Dutch quotes to English; dissemination
Dido	Thinking along with design	Conducting interviews	Joining analysis discussion sessions	Dissemination
Damar	N/A	Sharing personal experience; facilitating interviews and observations	Joining analysis discussion sessions	Reviewing and reacting to article drafts; dissemination
Lucia	N/A	N/A	Formal analysis of Dutch language data; member checking	Editing manuscript; dissemination
Renée	N/A	Sharing personal experience	Creation of artistic translation; discussion of themes with Anna	Reviewing and reacting to manuscript drafts; dissemination

Table 2. Quantitative details of data collection.

Observer hours logged
Anna M. Carapellotti	78 h
Hannie (J.E.M.) Meijerink	20.5 h
Observation settings	RDM dance classes RDM rehearsals Inclusive dance festival Dance and health themed symposia Other local dance classes
Interview 1 settings	Home (n = 4) Dance academy (n = 6) The performance theatre (n = 2) Private room at university (n = 1)
Interview 2 settings	Home (n = 1) Dance academy (n = 2) A café (n = 1) On the phone (n = 3)
Interview 1 duration M [range]{total}	1h8m21s [32m36s—3h28m23s] {15h56m28}
Interview 2 duration M [range] {total}	48m32s [20m54s—1h21m07s] {5h39m6s}

Figure 1. Hannie’s mind map of “rise above the self”: A big bowl filled with fluid representing reality/daily life. The magical world of dance is the heater, the energy source, the fire that heats the big bowl. The warmer the fluid gets, the more gassy bubbles appear (the key elements of dance). They get higher and higher in the pot as the temperature increases. When it’s optimally hot, the bubbles escape on the upper side as steam: the rise above yourself. All the elements in the pot move around constantly. When there is no energy from the magical world, the fluid will be cold and thick without any bubbles. If there is too much heat, the pot can boil over.

Box 1. A poem written by Hannie (J.E.M.) Meijerink after her first dance class with Parkinson’s.

My unforgettable meeting with Dance for Health Eyes that welcome me. Immediately I feel comfortable with these people. A little chat and when the music starts, concentration. Like a spiderweb, a flow of positive energy arises between Andrew and dancers. You feel the intention to enjoy this hour in this class. Attention and empathy for each other. Taking someone’s hand to help getting started or an encouraging look. But most of all the realization that Parkinson’s is not the unwanted and unloved intruder in this place. This morning he does not decide what you can or cannot do. Together you are beautiful by moving to music. Rediscovering strength and balance, both feet firmly on the ground. A class that teaches you something valuable: love your body and cherish it the way it is. Be proud of it and let it go in this dance to music. Let your muscles explore and become aware how they can move in a dance. Let them experience how much more they can do because you want to make it happen. And you let it happen. Feel how your way of moving activates all that flows in your body. Experience how love and attention for your body, and all the things it can do, makes your movements better and lighter. Emotions, emotions, I feel so good! The flow I get into, by moving to the rhythm of the music, makes me happy. For me there’s no better medicine than music and dance. I totally agree with Andrew, who wrote this: More people should feel their body’s. The Parkinson’s party should be open for all. Thanks, it was great, I am happy!

Translated from Dutch by Hannie and Natalie Lewin. “Dance for Health” was a Dutch organization offering classes for Parkinson’s, MS, & Rheumatoid arthritis from 2013 to 2019. “Andrew” was the facilitator on this day Hannie first attended.

Figure 2. Escape, expand, embrace (1) by Renée Kool

Figure 3. Escape, expand, embrace (2) by Renée Kool

Figure 4. Escape, expand, embrace (3) by Renée Kool

Box 2. A brief description of Christine’s dance journey.

“Diagnosed with MS in 2001 … my world started to shrink, doors closed, many activities ceased, and along came a loss of self-esteem and confidence. It was tough to deal with, especially after having had a very lively career in the world of fashion, design and journalism, travelling extensively and with a busy social life. “Who I was” had come to a somewhat abrupt end and I was not sure how I would carry on. I found it difficult to accept and deal with my MS condition, until I heard about a research group looking into the effect of dance on MS … Let me add, that since I was a little girl, I dreamt of being a ballet dancer, but never ever danced! Right from that moment, when dance entered my life in 2015, my life changed considerably, and a whole new exciting chapter opened up. Dancing with several artists, combined with several years of travelling, demonstrations, talks and sharing my dance experience … And then … end of 2019 … A series of brain-strokes resulted in a huge loss of mobility, strength, energy and capability. I had to once again cease activities, cancel plans—everything stopped, on pause. Where it all goes from here I have no idea … all I can say is that at least now I am in a positive state, through the grace of dance.”