Rehabilitation & Physical Therapy
Your Rehabilitation Team
Rehabilitation teams should include physicians, physical and occupational therapists, speech language pathologists, orthotists and providers of durable medical equipment. This team works to collaborate with the other subspecialty members of the Duchenne care team (i.e., neuromuscular specialist, cardiologist, pulmonologist, endocrinologists, etc.).
Physical therapy (PT) will be an important part of life from the time of the Duchenne diagnosis. It is important that you have specialized physical therapy evaluations every 4-6 months. This way, any and all changes can be tracked overtime and needs can be addressed.
Physical therapists play an important role in:
- Minimizing contractures by introducing regular stretching into your daily routine
- Maintaining function and adapting to any loss of function
- Monitoring function over time through standard tests and measures
- Assessing for and managing compromised skin integrity
- Preventing and managing pain
- Prescribing exercise and supervising safe physical activity (i.e. aerobic exercise)
- Recommending mobility devices, adaptive seating, and other equipment
- Rehabilitation after injury or fracture
Physical therapy is different in Duchenne than in other situations. In other diagnoses, PT can help increase range of motion, strength, and function; in Duchenne, the goal of therapy is to preserve range of motion (the flexibility of a joint), strength, and function. PPMD videos will help your PT to provide the best therapy for you/your child.
Physical Therapy’s Role in the Care Team
Your physical therapist should work closely with your neuromuscular specialist, physical medicine & rehabilitation (PM&R) physicians, occupational therapists, speech-language pathologists, or any other providers who make up your rehabilitation team. This team will focus on your individual goals and lifestyle and provide appropriate care. Physical therapists play a major role in obtaining appropriate adaptive seating and equipment. They can also work with your family and help advocate on parent’s behalf to insurance companies. You should have a thorough physical therapy evaluation (strength, function and range of motion of the hips, knees, ankles, shoulders, elbows and wrists) at least every 4-6 months. These measurements should be tracked longitudinally so that indications of muscle weakness or joint tightness are found, and treated, early.
Skeletal muscle attaches to the tendons and joints of the body. In Duchenne, skeletal muscle is replaced by fat and scar tissue. The fat and scar tissue that replace the skeletal muscle are shorter and less flexible. These shorter muscles pull on tendons, that then pull joints into a “flexed” position. If the joint is left in this position too long, the joint becomes “contracted,” or permanently fixed in this position. In Duchenne, tightness first develop in the ankles, due to the shortening of the calf muscle and pull on the Achilles tendon.
Contractures can be difficult to prevent, but it is important that you do all that you can to prevent their formation. You should see a PT team for evaluation at least every 4-6 months. Your PT team will help you to know how best to prevent contractures. Stretching tendons regularly and wearing braces, especially on the feet and ankles, will help keep the tendons stretched and flexible. Your PT team will also follow the strength, function and range of motion (how flexible your joints are) of all of your joints at each visit. This evaluation should include shoulders, elbows, wrists, fingers, hips, knees and ankles). This evaluation will help them to know when joints are becoming tighter so that they can make recommendations to you for appropriate stretches and/or braces for these joints.
Non-Surgical Contracture Prevention and Management
Working to prevent contractures proactively (before they occur) is always best. Contractures are not always preventable. If they do occur, there are ways to manage contractures and maximize the function of the joint.
Stretching should be a part of your daily routine and will be guided by your physical therapist. Regular stretching of ankle, knee, and hip should begin early and continue through adulthood. Stretching of the arms is increasingly important as you get older.
Bracing helps to keep the joints in alignment and maintain flexibility and function of the joint. Braces can be used on the lower limbs (ankle-foot orthosis (AFO) and knee-ankle-foot orthosis (KAFO), the wrists, and the hands. When tightness of a joint is found, stretching will help to loosen the tendon and keep the joint flexible. Wearing braces enable a prolonged stretch to the joint. As we mentioned above, in Duchenne, tightness first develop in the ankles, due to the shortening of the calf muscle and pull on the Achilles tendon. Wearing braces at night (“night splints”) enable the joints of the ankle and feet to be stretched for several hours. Most children are encouraged to start to wear night splints at, or near, the time of diagnosis. These braces are called “AFO’s” (ankle, foot orthoses). The specific type of brace that you will need will be ordered by your physical therapy team. Wearing splints of this type are not recommended during the day, as they have a tendency to increase falls and increase the demand on the quadriceps (thigh) muscle. It is important that you are evaluated by a PT who is familiar with Duchenne.
Serial casting refers to a process of applying plaster casts, serially, over a period of time to the ankle. The purpose of serial casting is to apply a stretch of the Achilles tendon over a period of several weeks with the goal obtaining the maximal stretch and range of motion of this joint. This procedure is not done at all centers, and should only be done at centers familiar with both the procedure and Duchenne. Careful monitoring by an PT with experience in serial casting and Duchenne is critical for success.
As mobility devices become necessary, these, too, will need to be evaluated by your physical therapy team. It is important that the device is used safely (wear your seat belt always and chest strap, if needed) and that the device offers optimal support and proper positioning. Following the advice of your physical therapist regarding when specific mobility devices are needed, is important. Your physical therapy team will help you to access the devices most appropriate for optimizing your function and quality of life.
Use wheelchair inserts and support
Subtle changes in wheelchair posture may indicate possible changes in the spine. Parents can play an important role in protecting their child’s spine by carefully and routinely checking posture while sitting. During growth, changing the dimensions of the chair helps maintain the best upright posture without having to lean. Wheelchairs should have inserts on it so you are able sit upright and keep all parts of your body supported and in the proper position. If you are not having spinal surgery and your back pain is getting worse, a back brace may help.
For a detailed look at posture and seating, refer to our Mobility & Accessibility page.
Preventing falls will go a long way to helping to maintain ambulation. Inside, making sure areas are as free from clutter, slippery surfaces or fall hazards, as possible, is helpful. Outside, paying attention to uneven surfaces and slippery surfaces can also help to prevent falls. And, again, if you are on a mobility device, wear your seat belt!
Physical Activity and Exercise
Physical therapists have an important role in prescribing, monitoring and guiding exercise. Aerobic exercise should be low or no impact, with minimal resistance. Swimming is generally the best exercise as there is less stress on postural muscles in an aquatic environment. It is important not to become over fatigued and to allow for rest periods. Talk to your physical therapist and rehabilitation team about what is safe.
Additional Daily Reminders
In addition to daily stretching and night-time bracing, there are a number of smaller items you should remember to incorporate into your daily routine to help preserve flexibility, strength, and function of your skeletal muscles, including:
- Sitting up straight with good support
- Keeping knees together and feet supported
- Moving hands and wrists often
- Keeping your tongue in your mouth
- Exercising jaw muscles
- Staying safe
- Remembering to rest when you need to
Watch: Head, Shoulders, Knees, and Toes
- PT Management Document (download): This article details the importance of physical therapy in treating Duchenne.
- Important Aspects of Physical Therapy (review): Presented by Helen Posselt at PPMD’s 2010 Connect Conference.
- Templates for developing letters of medical necessity and letters of appeal