Things to Do Now
A Short List of Things to Know & Do Now
- Register with PPMD.
- Find a neuromuscular provider who knows how to care for patients living with Duchenne (more information: Get Care).
- Talk to your child’s healthcare provider about physical activity. Too much of some types of strenuous activity are bad for your child’s muscles (more information: Get Care).
- Ask your neuromuscular provider or physical therapist about stretching, and learn how to stretch your child’s muscles appropriately (more information: Get Care).
- If your child is getting physical therapy (PT), ask the therapist to contact PPMD for specific PT recommendations (more information: Get Care).
- Ask about the risks and benefits of starting corticosteroids (most children start before age 5yo)(more information: Get Care)
- Duchenne is a progressive disease (meaning that it gets worse over time), but it gets worse very, very SLOWLY and patients progress at different rates (more information: Get Care).
- Most parents and families are able to adapt to living with Duchenne. It’s not easy and it takes time, but we can help you get there (more information: Get Support).