Duchenne Muscular Dystrophy: Directory of Exercises



On this page, you will find directions for facilitation of several group activities. Click the links below to navigate to the various exercises on the page.

Listening: Interactive Exercise

This group activity will take about 60 minutes.

  1. The facilitator invites participants to find a partner-preferably someone they do not already know.
  2. Have the partners face each other.
  3. Determine the order that each person will speak.
  4. Each person will have 3 minutes to share his/her responses to a question.
    1. The question to be explored: “Share a time when you were able to provide care for a patient with DMD that you were proud of.”
  5. The first person to speak will share their experience while the other person listens silently. There should not be any cross talk or questions during the time the person is speaking. The listener is invited to bring their whole self into the process and listen deeply to the words of the other person.
  6. At the end of 3 minutes, the facilitator will signal the end of the time. The person speaking should complete their sentence and both people remain silent.
  7. The roles switch and the listener, becomes the speaker and the speaker listens deeply in the same way as their partner.
  8. At the end of the second 3 minutes, the partners will thank each other.



  1. What was it like for you to speak about your experience in this way?
  2. What did you notice in your body, emotions and thoughts as you told your story?
  3. What was it like to be listened to by your partner?
  4. What did you notice that suggested to you that they were listening to you? 


  1. What was it like for you to listen to your partner?
  2. What did you notice in your body, emotions and thoughts as you listened in this way?
  3. What did you notice yourself wanting to do or say?
  4. What was your experience of being silent?

Images of Hope: Interactive Exercise

This group activity will take about 60 minutes.

Supplies: Provide a collection of images (postcard size works well) that evoke different feelings drawing from nature, art, photographs, and other scenes.  Provide an ample supply of images so that there are about twice as many images as the people in the group so that there are plenty to choose from.

Prep:  Arrange chairs in a circle. Place the pre-selected images on the floor in the center of the circle.  Invite members to sit in the chairs in the circle. Place one page of flipchart paper on the wall near the circle.  Have tape and post-it notes nearby.

  • Invite group members to sit quietly for a moment.  When everyone is settled, begin with the first person in the circle; invite them to choose an image from those in the center of the circle that represents hope to them.  Each person goes in turn until everyone has an image.
  • In silence, ask participants to reflect on their chosen image for 1-2 minutes.
  • Go around the circle and ask each member to share in 1 sentence share what this image means to them. Facilitator Note: Encourage participants to distill their statements to just once sentence. Example: “This image of mountains represents hope to me because…”
  • After each person has spoken, pause for a moment and ask group members to briefly reflect on what they have heard from each other.
  • Pass out Post-it notes to each participant. Ask them to write one word that represents hope to them (can be related to the image or another word).
  • Ask each participant to tape their image and their post-it note word  (which they share with the group) onto a flip-chart, creating a group collage. The post-it note can be placed on the collage – either on their photo or somewhere of their choosing.
  • When everyone has placed their image and post-it note on the group collage, invite everyone to stand together in front of the collage to reflect on the image and what it evokes for them.
  • End the session with a moment of gratitude to everyone for their participation in the activity.

Exploring Quality of Life: Interactive Exercise

This exercise will take about 60 minutes.


  • Your role in this session is facilitator.  Welcome participants.  Explain the rationale for the emphasis on small group learning across boundaries (i.e., family member/clinician, different disciplines and settings of care).
    • (Refer to Relational Learning article on Related References sheet in Participant Notebooks. Facilitator’s have one copy of this article to offer to small group participants if they did not have a chance to read the article e-mailed to them ahead of time.)
  • Explain that this is the first of six sessions in which the small group will meet:
    • Sessions 1b, 2, 3, and 4 will use small group activities from the curriculum.
    • Sessions 1a and 5 will introduce and close the group’s work together.
    • (Refer to Retreat Agenda in Participant Notebook)
  • Review general guidelines and ground rules for small group work.
    • (Refer to Participant Notebook for “Responsibilities for Collaborative Learning.”)
  • Discuss self-awareness, reflective practice, creating safety, vulnerability, taking risks.
  • Introduce yourself and the facilitator briefly and review your role as faculty, facilitator, debriefers, and guides.
  • Review Learning Objectives of this session: (Refer participants to Learning Objectives for this Small Group that can be found in their Participant Notebook)
  • Recognize the range of individual perspectives on what constitutes “quality of life”
  • Explore the role of palliative care in discussing quality of life for patients and family members
  • As you facilitate this session, do your best to make family members in your group comfortable taking part in the discussion.  Look for opportunities to draw them into the conversation.

Group Introductions (2 minutes per participant, 20 minutes total)

Explain that the remainder of this session will be devoted to exploring basic values regarding quality of life.  Ask each person to introduce themselves in the following way:  Please state your name, discipline or role (physician, nurse, family member, etc.), and home institution. Then, please respond to the following question. Ask each person to “distill” their comments into 2 minutes (you will need to monitor the time).

“Please respond to the following prompt, keeping your responses to approximately 2 minutes. Question:  The most important thing I have learned in caring for children with life limiting conditions, such as muscular dystrophy, is…”

Individual Reflections on Quality of Life (3 minutes)

Ask each participant to take 3 minutes to individually reflect and write answers to the following questions:

  1. If you were defining “quality of life” for yourself and/or your family, what 5-6 components would be most important?
  2. What values underlie your definition of quality of life?
  3. When you were an adolescent, what meant the most to you regarding your quality of life? Now, think of being a patient with NMD. Would you have been able to experience these things?
  4. What would they need to be able to achieve your desired quality of life?

Group Debriefing and Discussion (25 minutes)

  1. What is the “essence” of quality of life?  Ask participants to list some of their components of Quality of life –use a flip chart to capture the list. Facilitator Note:  Use some of the following questions to probe meaning of quality of life.
    1. What do you notice about the similarities or differences in your responses about quality of life?
    2. How do they compare to what you’ve heard from patients and their family members? What key components/values seem to be critical in defining “quality of life” for a child with disabilities, especially those with NMD?
  2. What is the role of hope in quality of life?
  3. How can you, as a clinician, help adolescent patients increase their quality of life?
  4. How can patients, families, and clinicians have productive and comfortable conversations about definitions of quality of life and the implications for treatment?
  5. How might discussion of palliative care contribute to those conversations?

Exploring Grief, Meaning, and Self-Care: Art Activity

This activity will take about 60 minutes.

Background: All participants will engage for 30 minutes in an open-ended art exploration around the theme of grief, meaning and self care.  After this process, participants will process their experiences and thoughts as facilitated by faculty leaders.

Exploration of Themes (45 minutes): Ask participants to share their artwork — as a product and as a process — using the following questions to facilitate discussion:

  • What was your experience in the art process?
  • What images arose in your art process?
  • What ideas or feelings did you experience symbolically or concretely in your art process?
  • What ideas or feelings do you experience now looking at your artwork around the themes of grief, meaning and self care?
  • How does a nonverbal process like art-making inform us regarding the themes of grief, meaning and self care?
  • What are the implications of these ideas for communication and partnership with children and families affected by life-threatening pediatric neuromuscular disease?

Note: There are no correct answers to the processing in this discussion. Participants can be encouraged to share their artwork with the group and discuss their experience in both creating the piece and exploring it relative to the themes of this session.  Suggestions for facilitation will be discussed in onsite faculty meeting.

Overall Debriefing (15 minutes): Ask participants, “How might the kind of learning from this session happen in settings — both formal and informal — within your own institutions (e.g., educational activities, rounds, nursing report, lunchtime conversations, family meetings, staff meetings)?”

Reflections on Ben’s Story

This exercise will take about 30 minutes.

Have participants read the following story and respond to the questions below:


      Imagine a life where people literally do everything for you. It sounds great doesn’t it? Well, if I want a drink, someone gets it for me and they even hold the cup! If I want to play a video game, someone puts the disc into the console for me. I have people who bathe and dress me and even clean my teeth for me! When I’m hungry someone gets me food (I don’t make it myself) and someone always opens the door for me.

By now you are probably thinking, “Wow, he’s lucky” and that I am either a famous person with lots of assistants, an affluent person who can afford all these ‘servants’ or just a lazy person. Well you would be wrong. I’m not famous (not yet anyway), I’m not lazy (I would love to be able to do everything for myself), nor am I wealthy (my parents are my ‘servants’). I do however; have a legitimate reason for all these helpers and all this help. I have a medical condition called Duchenne Muscular Dystrophy or DMD.

I was diagnosed during the week of my fifth birthday and it came as a great shock to my parents and family. DMD is a genetic condition carried by the mother and passed to her son. DMD does not recognize race, color, social status or nationality. I am half English. My mom is an English emigrant who came to this country to marry my dad in 1992. She is not a carrier of DMD so in my case the doctors say, it was spontaneous mutation. A fault occurred on one of my DNA strands which stops my body from producing the muscle protein dystrophin.

I used to be able to walk and run but in the third grade I began to use my power wheelchair which made me happy because it was getting to be very hard work for me to get around.

There have been times when I felt that my life is barren because I have to rely on people to do so much for me, but in fact my life is wonderful! I have everything I need to make my life easier and happier although I am waiting for someone to contrive a device that could help my parents lift me. Taking care of me can sometimes be very hard work for them.

I am a member of the MDA (Jerry’s Kids) which is an organization that helps kids like me to get things I need. Every year in June, the MDA has a summer camp that I get to go to and I have so much fun there! I stay for a week and I get to be with kids who are just like me. Everything at camp is free for the campers. All the activities like crabbing, boating, swimming, horse-riding, motorcycle rides etc and even my room and board are free. It’s amazing! The MDA can only do this though thanks to kind people who endow monetary gifts each year through the Shamrock Campaign at local stores such as Lowes, Taco Bell, Burger King and KFC.

Every month I attend a teen group where we get together and play games, watch movies or go out to dinner. I always have a lot of fun and laugh a lot when I am there.

I am also an ambassador for the MDA which means I get to go to different places and meet lots of people and thank them for everything they do to support Jerry’s Kids and the MDA.

I have also been asked to be in a medical documentary movie that will be shown to doctors all over this country and maybe the world. I will be going to the MDA clinic where they will film me with my doctors and then they are coming to my house to film my life at home. This is a great opportunity for me and I think it will be very helpful for doctors to see what it is really like to live with my condition.

So what does the future hold? Well, I plan on graduating high school with the idea that my vocation will be in video game designing. Who knows though, I may even become the proprietor of my own video game store.

In the meantime, I’m concentrating on enjoying my life, my home, my friends and my family and all the love, fun and kindness that they lavish on me.

Discussion Questions:

  • What insights do you take away from Ben’s story?
  • In what ways does hope play a role in Ben’s life?
  • How might these insights impact your own clinical practice?

Closing Activity

In this session you will guide the small group members to complete their experience together.  For many participants, the experience of learning in a small group setting may have been quite different from other professional learning experiences.  This session is an opportunity for people to reflect on their experience and say their “good-byes” since this will be the final small group session.

Materials:  Shells, dish, retreat evaluations

Introduction and De-Briefing of Art Activity and Transition Plenary (15 minutes)

  • What did you notice about your responses to the art activity? What did you learn about yourself and others?
  • What new insights did you gain from the transitions plenary? What opportunities do you see to enhance the experiences of adolescents in their various transitions?

Group Activity/Discussion (35 minutes)

  • Thank participants for their involvement in the group.
  • Make a few remarks about your own experience in the group and what it was like for you to serve as faculty and facilitator.
  • Ask each participant to share what it was like to participate-what surprised and/or inspired them from the retreat.  (Hopefully all will do so.)
  • Ask each person to consider what others can count on them for when they go back to their home institution regarding palliative care. Ask them to write a word that reflects this commitment on a post-it note.  Ask them to bring the post-it note into the final session.
  • Finally, place the shells in a dish and send them around to each group member.  Invite them to take a shell from the dish and tell them it will be a tangible reminder of the time here-the people they met, the vision shared, the creative ideas that arose.

Instruct them to take a shell and respond to: How will you practice differently as a result of being here?

This activity is re-printed or adapted here with permission of: The Initiative for Pediatric Palliative Care (www.ippcweb.org) Copyright 2003 Education Development Center, Inc.