Parenting

Navigating Physical Education with Duchenne Muscular Dystrophy

Navigating Physical Education with Duchenne Muscular Dystrophy

Running, squats, sit-ups, and push-ups are only some of the most common exercises for kids in PE. These exercises help strengthen and tone their muscles, as well as promote a more active lifestyle. It is a different story, however, for kids who are diagnosed with Duchenne Muscular Dystrophy (DMD).

Since DMD is a degenerative neuromuscular disease affecting the major muscle groups, physical fatigue will have a detrimental effect on these kids’ health, which may make them end up in a wheelchair. So, it is imperative that educational experts are aware of its symptoms and of any treatment or medication the patients are undergoing.

Yet, this does not mean they no longer have to take part in their school’s PE activities. The key is to have an adaptive curriculum to accommodate the needs of children with Duchenne muscular dystrophy, but many schools barely take these kids into account.

Understanding the need

It might be easier to just exclude Duchenne muscular dystrophy patients in PE classes to avoid straining their muscles. In fact, this could be the first thing that comes to mind. However, realizing how badly this will make them feel, this is actually not the greatest of ideas. Additionally, these children also need some physical activity, even if it's just limited.

Schools working to coordinate with the parents is the first step. Although schools may have already been briefed, parents are in the best position to suggest appropriate physical activities for their kids since they know them the best. Even when they still do not show signs of muscle degeneration, it is important to know that any performed activity will influence their children’s future health and functionality.

The typical PE curriculum introduces some muscle straining activities like push-ups, weight training, and running. Since all these can easily hurt Duchenne muscular dystrophy patients, they should be excluded in the specialized curriculum. The recommended activities are those that help patients to conserve energy so that they can participate in many tasks. The activities should also help them understand the value of routine and consistency, which are not only important traits but can also assist with their physical needs.

Considerations in planning a specialized PE curriculum

Planning a specialized PE curriculum for patients of Duchenne muscular dystrophy will be most effective when parents, educational experts, and the patients will work together in coming up with a plan. Other kids may not be as helpful due to factors like age and cognitive ability, but it’s best if they can contribute one way or the other.

Experts from CureDuchenne.org suggest starting creating an Activity Log that contains information about the line of activities, time, and the tasks involved in each plan, which should be easy to customize so it can reflect every patient's needs. Activities in the log should be implemented in a predetermined time frame such as three to five school days.

More importantly, it should contain activities that will help conserve student’s energy. Incentives may also be given to ensure that kids follow up on each item. Finally, the activity log should be reviewed and revised consistently to cater to the progression of the dystrophic condition. This should be done quarterly or every six weeks for the entire school year.