CNMN > Projects > Piece of Mind — Understanding and Communicating Parkinson’s Disease through Music and Poetry

Naila Kuhlmann, Lili Saint Laurent, Caroline Barbier de Reulle

  • Open (def: scores for unspecified instrumentation)
  • Voice
  • Acoustic instruments
  • Adults
  • Seniors

This can vary, but would work best over a series of 1-2 hour sessions (over weeks or months).

  • Education
  • Health

Piece of Mind — Understanding and Communicating Parkinson’s Disease through Music and Poetry



With­in the con­text of the Piece of Mind project (details at the bot­tom of the page), we describe a col­lab­o­ra­tive activ­i­ty in which we trans­lat­ed a poem about the lived expe­ri­ence of Parkin­son’s dis­ease (PD) to music and then put it onto the stage. In col­lab­o­ra­tion with the author Lili Saint Lau­rent, musi­cian Car­o­line Bar­bi­er de Reulle ini­tial­ly com­posed a song based on the orig­i­nal text, and by draw­ing inspi­ra­tion from exchanges with oth­er Piece of Mind par­tic­i­pants. The cre­ative process then went through sev­er­al iter­a­tions, includ­ing incor­po­rat­ing the many voic­es of our project, and becom­ing the start­ing point for the final scene of Piece of Mind: Parkinson’s.

Below we break down our process of co-cre­ation, with the hope that it can be adapt­ed to oth­er texts and contexts.

Activity Breakdown

Goal: to depict a lived expe­ri­ence (in our case, Parkin­son’s dis­ease) using dif­fer­ent forms of artis­tic expres­sion. We aimed to add new dimen­sions to the ini­tial text by mix­ing dif­fer­ent artis­tic styles and points of view, while remain­ing true to its orig­i­nal meaning.

Where: On a vir­tu­al plat­form such as Zoom, through direct mes­sag­ing, and/or in person.

Dura­tion: Plan for a min­i­mum of sev­er­al ~1–2 hour ses­sions, spread over mul­ti­ple weeks or months. This type of col­lab­o­ra­tive process requires time to build rela­tion­ships and lis­ten to all participants.

Par­tic­i­pants / Tar­get Audi­ence: In our case, this activ­i­ty was car­ried out in a col­lec­tive includ­ing peo­ple with lived expe­ri­ence of PD, care­givers, neu­ro­sci­en­tists, dancers, cir­cus artists and musi­cians. This activ­i­ty could be adapt­ed to oth­er groups.

Group size: We sug­gest that the pri­ma­ry col­lab­o­ra­tion be between 2 to 4 peo­ple (small group), in order to ensure that mean­ing­ful com­mu­ni­ca­tion can be estab­lished and that the exchanges will be fruitful.


  1. Choose a work (a poem or oth­er text) that fits your final objec­tive and rep­re­sents the spir­it of the project, while con­sid­er­ing the musi­cal pos­si­bil­i­ties. In our case, the poem “Sur le fil” by Lili Saint Lau­rent, a woman liv­ing with PD, became a com­mon thread for our group as it cre­at­ed a nat­ur­al link between the lived expe­ri­ence of PD and the cir­cus arts through which we want­ed to depict it.
  2. Take the time to lis­ten to and under­stand the piece. Ask your­selves what it means, what key feel­ings or mes­sages are con­veyed in the work, and which musi­cal ele­ments might best cor­re­spond to the desired feel­ing. Based on this reflec­tion, the musi­cian can com­pose and pro­pose an ini­tial musi­cal inter­pre­ta­tion of the text.
  3. Fol­low­ing this ini­tial pro­pos­al, plan an exchange between the musi­cian and the author of the text so that the lat­ter can express his or her reac­tion to it. This will allow the author to have an idea of the musi­cal style pro­posed, and to ver­bal­ize what works and what does not. Be open to exper­i­ment­ing with pos­si­ble avenues, and going through sev­er­al drafts and iter­a­tions — some­times you have to go in the wrong direc­tion at first to find a com­mon path! As an exam­ple, have a lis­ten to the first and sec­ond ver­sion Car­o­line pro­posed here.
  4. Once you are hap­py with the com­bi­na­tion of text and music, share it with the oth­er artists, to allow them to form their own asso­ci­a­tions with it. If you are work­ing in a group, find ways to incor­po­rate the oth­er per­spec­tives or ideas so that the work becomes a col­lec­tive effort. In our case, this meant inte­grat­ing all the par­tic­i­pants’ voic­es into the sound­track, and adjust­ing the musi­cal com­po­si­tion to fit the chore­og­ra­phy for our per­for­mance.  You can check out the final ver­sion of the song here, and see the cor­re­spond­ing scene here.

To learn more about the cre­ative process of pro­duc­ing this piece of music, and hear direct­ly from Lili and Car­o­line, check out our lit­tle vignette (pri­mar­i­ly in French) here.

Quotes (trans­lat­ed from French):
“When I wrote the poem, it was with the idea of phys­i­cal­ly tran­scrib­ing the imper­ma­nence of my life with Parkin­son’s dis­ease. Every move­ment, every thing that I would do took on a new impor­tance, rec­og­niz­ing that where I would be in the next moment was unpre­dictable.”   — Lili Saint Laurent

“My first propo­si­tion to Lili was a melod­ic song — with piano, voice, vers­es and a cho­rus […] I sent it to her, and she said: ‘Lis­ten, your song is very love­ly, but it does­n’t cor­re­spond to what I feel and how I live in my body.’ ” — Car­o­line Bar­bi­er de Reulle

“This poem kept com­ing back to me, because it illus­trat­ed the theme of the project so well. So at the end of a Zoom ses­sion, I asked: ‘could I read some­thing to you?’ For me, it was just a lit­tle offer­ing… but it touched every­one so deeply, and kept com­ing up in dis­cus­sions after­wards, so it end­ed up being a nar­ra­tive thread for the per­for­mance.” — Lili Saint Laurent

“[…] What could cor­re­spond best to what Lili explained to me regard­ing how she feels? So then I thought about the vio­lin — the idea that “the wire” can also be a string, a chord — and I want­ed to use the vio­lin in a chaot­ic and noisy way, to rep­re­sent the mul­ti­tude of emo­tions in the poem…” — Car­o­line Bar­bi­er de Reulle

Piece of Mind

Piece of Mind uses the per­form­ing arts to syn­the­size and trans­late knowl­edge about Parkinson’s dis­ease (PD) and demen­tia. Our par­tic­i­pa­to­ry research-cre­ation project brings togeth­er artists (cir­cus per­form­ers, dancers, musi­cians, visu­al artists), researchers, indi­vid­u­als liv­ing with PD or demen­tia, and care­givers to co-cre­ate artis­tic works based on sci­en­tif­ic research and lived expe­ri­ence. The over­all goals are to:

  1. facil­i­tate knowl­edge cre­ation and exchange between the seem­ing­ly dis­parate com­mu­ni­ties par­tic­i­pat­ing in the cre­ative process and
  2. cre­ate per­for­mances that can engage a wide audi­ence on both an emo­tion­al and intel­lec­tu­al lev­el, and spark mean­ing­ful con­ver­sa­tions around PD and dementia.

We use an emer­gent and iter­a­tive process to iden­ti­fy the key themes and mes­sages to com­mu­ni­cate in our per­for­mances, and to ensure that mul­ti­ple per­spec­tives are incor­po­rat­ed along the way. Our research process has includ­ed numer­ous vir­tu­al work­shops, facil­i­tat­ed dis­cus­sions, and movement/music ses­sions to build rela­tion­ships and explore both sci­en­tif­ic and lived expe­ri­ence knowl­edge through cre­ativ­i­ty and embod­i­ment. You can see oth­er exam­ples from our project here:

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