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

ABSTRACT

Purpose

The purpose of this study was to explore the lived experience of dancing with Parkinson’s and Multiple Sclerosis in an inclusive dance group called ReDiscoverMe (RDM).

Methods

Participatory research approaches and interpretative phenomenological analysis were used to make sense of the lived experience captured in interviews and observations. Arthur Frank’s conceptual framework on embodied storytelling from his book The Wounded Storyteller was the study’s theoretical lens. Themes are both described and represented in images made by an RDM participant.

Findings

Dancing in a nonjudgmental environment was described by participants as a way to rediscover themselves while continually adapting to living with chronic illness. We interpreted this experience of rediscovery as an active, recursive process involving three “movements”: escaping, expanding, and embracing. Through these movements, participants could rise above the self and illness.

Conclusions

The lived experience of dancing in this group was characterized by transformations of the body, self, and life. Through escaping, expanding, and embracing, participants could more easily embrace the body’s contingency, integrate the self and body by becoming dancers, connect with others living with illness, and produce desire through passion. Participants could therefore experience illness as a journey and gain something from the experience.

KEYWORDS:

• Parkinson’s disease
• Multiple Sclerosis
• participatory health research
• dance
• inclusive dance
• chronic illness
• lived experience

Acknowledgments

The authors would like to thank Damar Lamers and all of the facilitators and dancers of ReDiscoverMe, as well as those involved in other dance classes for people living with Parkinson’s and Multiple Sclerosis in The Netherlands. The authors would also like to recognize Dido Mirck and Rob Hagen for their contributions to the project. The authors also extend their gratitude to the Netherland-America Foundation, Fulbright Commission the Netherlands, and those who donated to our crowdfunding campaign for their financial support.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

This work was supported by the Netherland-America Foundation and Fulbright Commission the Netherlands under a grant awarded to AMC with TAA as supervisor. The involvement of experts-by-experience was supported by community members and researcher networks through a crowdfunding campaign.

Notes on contributors

Anna M. Carapellotti

Anna M. Carapellotti holds a Bachelor of Arts in Cognitive Science from the University of Pennsylvania and a PhD in Psychology from Queen’s University Belfast. Her PhD research explored the multidimensional impact of dancing with Parkinson’s using mixed methods. She has worked professionally as classical ballet dancer and teacher, and she also leads dance classes for people living with Parkinson’s.

Hannie (J.E.M.) Meijerink

Hannie (J.E.M.) Meijerink is an expert-by-experience living with Parkinson’s and a patient researcher with the Dutch Parkinson’s Association (Parkinson Vereniging). She discovered her love for dance and dance music after being diagnosed with Parkinson’s. In 2019, she joined Foundation ReDiscoverMe as a participant and in 2021 performed in their production of Ik en de Ander. Prior to being diagnosed with Parkinson’s, she worked professionally as a veterinarian.

Christine Gravemaker-Scott

Christine Gravemaker-Scott is an expert-by-experience living with Multiple Sclerosis. She discovered the dance in 2015. She danced with Foundation ReDiscoverMe as a participant, and in 2018 she performed a duet choreographed by Damar Lamers from Foundation ReDiscoverMe at DanceAble#2 in the Holland Dance Festival. Prior to being diagnosed with Multiple Sclerosis, she worked professionally in fashion design and journalism.

Lucia Thielman

Lucia Thielman obtained her Bachelor of Biomedical Sciences at the University of Leiden and her Master’s degree in Management, Policy Analysis and Entrepreneurship in Health and Life Sciences. She worked as a researcher at the VU in Amsterdam, and she is currently an action researcher at the Leyden Academy on Vitality and Ageing.

Renée Kool

Renée Kool (1961) is an artist and artistic researcher. She graduated in 1991 from the Gerrit Rietveld academy for fine art and design in Amsterdam. While developing her art practice she went on to study Art Theory and Emergent Media. She never worked in a fixed medium nor with fixed materials, rather on assignments, often for temporary art projects in public spaces with multimedial outcomes. Lecturing in art and design education has always been an integral part of her practice.

As an artist and lecturer, she collaborated with specialists from many different fields like architects, urbanists, composers, translators, actors, and dancers. Since her Parkinson’s diagnosis, she is experimenting with different, less intensive forms of art production and with co-authorship. To unlock the trailblazing intersectional character of her oeuvre, Kool has started building a database containing all possible documents about the development of her works and their exposition. She recently stopped regular teaching and started dancing again, for dance was her very first artistic endeavour.

Natalie Lewin

Natalie Lewin is a dance instructor who works with people living with chronic conditions, including Parkinson’s and Rheumatoid Arthritis. She worked with the Dutch organization Dance for Health as an instructor and also in a movement group using a physiotherapeutic approach.

Tineke A. Abma

Tineke A. Abma is the Executive-Director of Leyden Academy of Vitality and Aging and Professor “Participation of Older People” at Leiden University Medical Centre, dept. Public Health & Primary Care in The Netherlands. For over twenty-five years, Tineke Abma has been researching themes closely related to the participation of clients and citizens, participatory research, arts-based methods, ethics and diversity. Her work aims to improve the social inclusion and quality of life of people, especially those in marginalized positions. The last two years she has supervised the first Dutch national study into the value and impact of arts in long-term care for older people. Abma is the author/editor of a number of books, including Evaluation for a Caring Society (IAP Press, 2018) and Participatory Research for Health and Social Well-Being (Springer Nature, 2019).