Care for Muscles
The information on this page represents the recommended standard of care for Duchenne muscular dystrophy. Most of the care recommendations also apply to Becker muscular dystrophy, but at older ages. Most, but not all, people with Duchenne are males—but the care recommendations apply to both males and females with Duchenne.
If you don’t understand any of the medical terms and concepts, ask your healthcare providers. Take notes and ask questions during your clinical visits.
Muscle Facts to Remember
- Because people with Duchenne do not have dystrophin (a protein found in muscle), their muscles will gradually become very weak.
- You should visit your neuromuscular specialist (NMS) every six months so they can assess your muscle strength,function, and flexibility to keep you as active as possible.
- Many exercises and activities can help. Some types of exercise and activities can make muscle damage worse. Be sure to ask your physical therapist and neuromuscular specialist which exercises and activities are safe for you.
- Stretching and wearing night braces may help the muscles to stay flexible.
- Steroids (corticosteroids) are the only medicines known to help slow down muscle weakness in Duchenne.
- It is important for you to tell your healthcare team how your muscles are working so your doctors can start the right treatment and help you stay as active and independent as possible.
As people with Duchenne get older, their muscles will get weaker. Dystrophin helps muscles keep their shape and heal when damaged. People with Duchenne have little or no dystrophin, so their muscles are unable to heal properly after normal use. The damaged muscle is replaced by scar tissue and fat, which causes weakness. Though the muscle weakness in Duchenne follows a predictable path, every person is different.
When children are very young, they may not have much trouble with their muscles. Usually, children with Duchenne are a little behind in their motor skills (like crawling, walking, hopping, jumping, and climbing stairs), and may fall more frequently, but they usually keep getting better at their motor skills until they are 4-6 years old.
Hip and pelvis muscles
Over time, the muscles in the hips and pelvis (the bone between the hips) get weaker. Children with Duchenne will have trouble doing things like getting up off the ﬂoor, jumping, hopping, and climbing stairs, and they may fall more often.
Back, shoulder, arm, and chest muscles
As children grow into the early pre-teen to teenage years, the muscles in their back, shoulders, arms, and chest may get weaker. The backbone may begin to curve (scoliosis) and they need more help doing daily activities.
When the muscles become weaker and shorter, it will be harder to move feet, knees, hips, and elbow joints. It’s important to move everything that you are able to move, every day. If joints are not moved, they may become locked in one position (contractures).
When people with Duchenne lose the ability to walk they will need to use a wheelchair that may be motorized and has supports for their hips and back.
As a late teen and adult, some people with Duchenne have trouble moving their arms.
In Duchenne, it is important to pay special attention to the groups of muscles responsible for breathing, eating, and swallowing as well. The heart is a muscle too. Your healthcare team should include members responsible for monitoring these specialized groups of muscles.
Many things can be done to help people with Duchenne. It is important for your rehabilitation team, including your NMS and physical therapist, to know the following information, so they can help you stay as active and independent as possible:
- Endurance (how long before you get tired out)
- Range of motion (how well you can move your joints)
Learn more about caring for orthopedic issues in Duchenne.
See your neuromuscular specialist (NMS) every six months
Your neuromuscular specialist (NMS) should serve as your “lead clinician,” guiding you and your family through all aspects of care. Your NMS is a neurologist or a physical medicine and rehabilitation doctor who specializes in the care of a person living with Duchenne.
Your NMS should measure muscle strength, function, and flexibility about every six months. This allows them to adjust treatments and medications. Your NMS should use the same muscle tests each visit. This consistency allows your NMS to pick up on any changes in your muscle function. Your NMS will work with your physical therapist to create a rehabilitation plan (stretching, orthotic use, etc.) that is specific to your needs.
In Duchenne, steroids (corticosteroids) are used to help maintain muscle strength for as long as possible. They are different from the anabolic steroids that are sometimes misused by athletes who want to become stronger. Examples of steroids used to treat Duchenne are prednisone and deﬂazacort (Calcort or Emflaza). Learn more about recommended care for steroids.
Exercising can help keep you healthy and active. However, many types of weight-bearing exercise can be harmful to your muscles and cause more damage. For example, swimming is a non-weight bearing form of exercise and is generally safe for people with Duchenne. Talk to your physical therapist or NMS about types of exercise and activities that are safe to participate in.
Starting at a young age, muscles and joints should be stretched 4 to 6 times a week (every day is best!). Your physical therapist will work with you and your family to develop stretching routines you can do at home. Regular stretching will help your muscles to stay flexible and prevent against your joints becoming locked in one position (contractures).
Use orthoses (braces)
Orthoses are braces and splints that can help keep your hands, feet, knees, and back stay in the correct position. Starting to wear these at night when you are young, can help maintain flexibility and prevent against your joints becoming locked in one position (contractures). Your physical therapist will advise which orthoses are best for you as well as ensure they fit properly.
Consider surgery or serial casting
If you are still walking (ambulatory) and develop an ankle contracture or other similar injury of the leg, prompt intervention is necessary so you do not lose the ability to walk. Serial casting may be an option in this situation, and can sometimes help people with Duchenne be able to walk for a longer period of time. Serial casting is the process of applying and removing casts (every 1-2 weeks) that gradually stretch muscles, tendons, and ligaments into the correct alignment.
Alternatively, surgery to correct contractures is sometimes an option, and may involve a quicker recovery time than casting. Talk to your neuromuscular specialist and a trusted orthopedic professional about which option will get you back on your feet the fastest.
Use mobility and assistive devices
Mobility and assistive devices can help you with your daily actives as you get older and your muscles get weaker. Examples of these devices are motorized scooters and wheelchairs, computer technology, and lifting devices. More are being developed all the time.
A Word About Wheelchairs
It is a hard step for many parents when their child starts to use a wheelchair. However, wheelchairs give people living with Duchenne a new sense of independence. Wheelchairs allow people to get around quicker, keep up with friends, fall less frequently, and be less tired overall.