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. Rather than present a sum­ma­ry of the var­i­ous activ­i­ties we’ve under­tak­en, we’d like to share two exam­ples* that could eas­i­ly be applied in dif­fer­ent contexts.

*You can find our oth­er exam­ple here:
https://www.newmusicnetwork.ca/projects/piece-of-mind-give-us-a-hand-participatory-art-sci-video/

ACTIVITY: impro­vi­sa­tion exer­cise from lived expe­ri­ence, to artis­tic rep­re­sen­ta­tion, to sci­en­tif­ic interpretation

GOAL: the pur­pose of this activ­i­ty is to explore top­ics around Parkinson’s dis­ease (PD) through the lens of lived expe­ri­ence, artis­tic rep­re­sen­ta­tion, and sci­en­tif­ic inter­pre­ta­tion, and to facil­i­tate mutu­al under­stand­ing between participants.

WHERE: via a vir­tu­al plat­form such as Zoom, or in person.

DURATION: 1–2 ses­sions ; each 1–2 hours.

PARTICIPANTS: in our project, the par­tic­i­pants were researchers, artists (includ­ing musi­cians, cir­cus per­form­ers and dancers) and peo­ple liv­ing with Parkinson’s dis­ease. The process can eas­i­ly be adapt­ed to oth­er tar­get audiences.

GROUP SIZE: 3 per group: one per­son liv­ing with PD, one artist, one researcher. If you are work­ing with mul­ti­ple artists (ex. a musi­cian and move­ment artist), you could increase the group size to 4.

INSTRUCTIONS:
1. Intro­duce the top­ic or ques­tion of inter­est that you would like to explore in the ses­sion. In our case, top­ics were used that emerged in pre­vi­ous ses­sions, includ­ing motor lim­i­ta­tions, the invis­i­ble aspects of PD, and how PD changes one’s per­cep­tion of time.

2.  Process: Each per­son in the group has 1–2 min­utes to share or present some­thing based on the pro­posed top­ic. The per­son with PD begins by shar­ing their lived expe­ri­ence of the top­ic. The artist then responds to the expe­ri­ence, either direct­ly (e.g. with voice, an instru­ment, move­ment) or by explain­ing how it might be rep­re­sent­ed in an artis­tic medi­um. The researcher clos­es the loop by pro­vid­ing sci­en­tif­ic con­text to the expe­ri­ence, or new ques­tions that come to mind from the exchange. Repeat the cycle as many times as you wish.

3. Par­tic­i­pants are request­ed to keep their respons­es to 1–2 min­utes so as to allow sev­er­al cycles between lived expe­ri­ence, artis­tic rep­re­sen­ta­tion and sci­en­tif­ic inter­pre­ta­tion. As the cycles progress, the process can become less defined as par­tic­i­pants build on one another’s ideas. We use body lan­guage and impro­vi­sa­tion­al games to help bridge the con­nec­tion between the 3 per­spec­tives — you can check out some exam­ples in the attached videos.

4. If work­ing vir­tu­al­ly, group par­tic­i­pants into break­out rooms. You can choose how long to make the break­out ses­sions; we rec­om­mend at least 15 min­utes per top­ic. If you would like to revis­it the exchanges after­wards, don’t for­get to record!

5. After the activ­i­ty, have a group dis­cus­sion (with all par­tic­i­pants) to share ideas and get par­tic­i­pant feed­back. If you have time, switch groups and repeat the activ­i­ty based on new ques­tions that emerge!

DESCRIPTION OF INCLUDED VIDEOS:
1. Anne, Louise, Anusha (Eng­lish)
In this video, the par­tic­i­pants dis­cuss how Parkinson’s dis­ease shapes one’s per­cep­tion of time, and how the rhythm of life is con­trolled by med­ica­tion. Anne, a woman liv­ing with Parkinson’s dis­ease, begins by explain­ing her expe­ri­ence of how time fluc­tu­ates dur­ing the day. Musi­cian Louise Camp­bell invites her to par­tic­i­pate in a musi­cal sim­u­la­tion of the expe­ri­ence, by “con­duct­ing” her clar­inet play­ing through hand ges­tures. Anne rais­es her hands to indi­cate when to play faster, low­ers them to indi­cate slow­er, and Louise adds tex­ture to the music based on Anne’s oth­er move­ments. After the exchange, neu­ro­sci­en­tist Anusha reflects upon the exter­nal cues that reg­u­late our sense of time, and how med­ica­tion might affect peo­ple differently.

Trans­lat­ed quote from Anne (in the group dis­cus­sion after­wards): “[…] it was incred­i­ble – it was as though my brain was singing. It was real­ly, real­ly beautiful.”

2. Serge, Car­o­line, Naila (French)
In this video, Serge, a man liv­ing with Parkinson’s dis­ease, begins by explain­ing the motor symp­toms he expe­ri­ences, and how these feel in his body. Car­o­line, a musi­cian, sug­gests an idea as to how the symp­toms Serge described could be rep­re­sent­ed on vio­lin, and impro­vis­es a short piece. Naila, who stud­ied the brain cir­cuit­ry affect­ed by Parkinson’s dis­ease, ends by draw­ing a par­al­lel between these motor symp­toms and how PD changes the com­mu­ni­ca­tion between neurons.

Trans­lat­ed quote from Serge (in group dis­cus­sion): “[…] she start­ed play­ing the vio­lin, and at first I had a lot of tremors, but her music calmed me […] I man­aged to con­trol my body.”

3. Serge, Car­o­line, Rebec­ca, Sher­i­lyn (French)
This video depicts a sec­ond round of the impro­vi­sa­tion­al activ­i­ty, in which Serge (who has Parkinson’s dis­ease) shares how the Piece of Mind project has affect­ed him emo­tion­al­ly. The musi­cian Car­o­line inter­prets his tes­ti­mo­ni­al through rhythm and voice, while Rebec­ca, dancer and researcher, accom­pa­nies her with a move­ment impro­vi­sa­tion. Sher­i­lyn, a PhD stu­dent study­ing Parkinson’s dis­ease, explains the emo­tion­al aspects of the dis­ease and the cor­re­spond­ing brain regions that are affected.

Trans­lat­ed quote from Serge (fol­low­ing an expla­na­tion from Sher­i­lyn): “You just described me as though you’ve known me for a long time.”

4. Anne, Louise, Claire, Anusha (Eng­lish)
This video depicts a sec­ond round of impro­vi­sa­tion between Anne, Louise, and Anusha, a few weeks fol­low­ing the first one (exam­ple 1). This time they are also joined by Claire, a researcher and tap dancer. In this clip, Anne, who has Parkinson’s dis­ease, con­ducts Louise’s clar­inet play­ing, using hand ges­tures to demon­strate how she is feel­ing that day. After the impro­vi­sa­tion, Anne pro­vides con­text as to how this com­pared to the pre­vi­ous session.

*Please con­tact Naila at pieceofmind.montreal@gmail.com if you’d like to know more about the project.*