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Managing Daily Life
As the person with Duchenne starts to have more problems moving around, consider making changes in your home that allow the person with Duchenne to move around the house as independently as possible. Special equipment or additions, such as wider doorways and ramps, can make life easier once the person with Duchenne cannot climb stairs or is using a wheelchair.
Being able to get from place to place is important for everyone. Mobility comes in many forms—strollers, walking (unassisted or with braces), electric scooters, manual or electric wheelchairs, and more.
For many parents and caregivers, it is painful to accept that a child needs help getting around, but it is better for the child to have mobility using help from braces, scooters, or wheelchairs—and the independence it gives the child—than not to be able to move as freely as possible. Parents and caregivers might find that children, teens, and young adults willingly accept devices and technologies that allow them to get around by themselves. Learn more about Braces and Wheelchairs.
Some physicians recommend a diet high in protein and low in carbohydrates and fat. Maintaining a normal weight is essential to prevent additional burden for weakening muscles. For people taking steroids, sodium-restricted diets are recommended.
Immobility and weak abdominal muscles in young men with Duchenne may result in constipation. A diet high in fluid fiber, fresh fruits, and vegetables can improve digestion.
People with Duchenne should participate in physical activity to improve both their physical and emotional well-being. Low-impact aerobic activity is recommended, while strenuous activities (such as walking up and down steps, lifting weights, and contact sports) are NOT recommended. Swimming is one of the best aerobic exercises for people with Duchenne. Please talk with your doctor or physical therapist for more information about appropriate exercises. Learn more in our Physical Therapy section.
As your son’s muscles weaken, he may have difficulty moving or turning over at night, and he’ll need help to sleep comfortably. People on steroids may also have difficulty sleeping. Physical therapists can recommend certain beds or mattresses to improve comfort and decrease the need for help during sleep times.
Keep in mind that restlessness or early morning headaches may be early signs of weakening respiratory (breathing) muscles. It is important to monitor pulmonary (lung) function, especially as children get older. Look for signs of breathing problems, and discuss any concerns with your doctor. Learn more about Respiratory Challenges.