Publications

The Neuromuscular Team, along with input from children and parents, has created a series of illustrated question and answer booklets called “DMD – Whazzup with that?”

These books follow the journey of Sam, a young boy with Duchenne Muscular Dystrophy, as he goes on an adventure to answer questions and help other boys and their families understand this diagnosis. The topic was divided into three books so that the material could be introduced to the children, as they are ready for it.

Part I is aimed at ages 5-9 and covers topics such as; What is DMD? Who is the Neuromuscular Team? What are AFOs? Why do I need to do stretches? Can I still run around and play with my friends? What do I tell my friends and  family about DMD?

Part II is aimed at ages 10-14 and covers topics such as; What is it like having a wheelchair? Do I have to change my house? What can I do for fun? Should I still do as much exercise? Why do we need to see a Cardiologist? Who is the Respirologist and what is this thing called breath stacking? Why do I need to see an Orthopedic Surgeon? Do I need to be careful about what I eat? What about family and friends?

Part III is aimed at ages 14 and up. It deals with issues such as ventilation, advanced care planning, relationships, self-advocacy, transition to adult services, etc.

For more information, or if you would like purchase copies, please contact Karen Forbes, Neuromuscular team leader and physiotherapist at 613-544-3400 ext 2075 or forbesk@hdh.kari.net.