Care

Request a Standards of Care booklet for Duchenne muscular dystrophy
NB: Standards of Care booklet’s for other neuromuscular conditions are pending.

 

Caring for someone with Muscular Dystrophy

Though there’s no cure for muscular dystrophy yet, doctors are working to improve muscle and joint function, and slow muscle deterioration in people who are living with the condition.

If someone is diagnosed with muscular dystrophy, a team of medical specialists can work with the individual and their family. That team will likely include: a neurologist, orthopaedist, pulmonologist, physical and occupational therapist, nurse practitioner, cardiologist, registered dietician, and a social worker.

Muscular dystrophy is progressive, so individuals may pass through different stages of the condition and require different kinds of treatment. During the early stages, physical therapy, joint bracing, and the steroid medication can often be used. During the later stages, doctors may use assistive devices such as:

• Physical therapy and bracing to improve flexibility
• Manual and power wheelchairs and scooters to improve mobility
• Ventilator systems to support breathing and respiratory functions
• Information technology to help perform routine daily tasks and interaction
• Specialised health beds to assist with movement through the night and during sleep

 

Physical Therapy and Bracing
Physical therapy can help to maintain muscle tone and reduce the severity of joint contractures with exercises that keep the muscles strong and the joints flexible. It is important not to over do physical activities too.

A physical therapist can use bracing to help prevent or manage joint contractures, which is a stiffening of the muscles near the joints that can make it harder to move and can lock the joints in painful positions. By providing extra support in the right places, bracing can extend the time that a child with muscular dystrophy can walk independently.

 

Medication
If a child has Duchenne muscular dystrophy, the doctor may prescribe the corticosteroid Prednisone to help slow the rate of muscle deterioration.

There is some debate over the best time to begin treating a child with steroid therapy, but some doctors prescribe it when a child with muscular dystrophy is 5 or 6 years old, or when strength begins to show a significant decline. Prednisone does have side effects. It can cause weight gain, which can put even greater strain on an individuals already-weak muscles and skeletal system. It can also cause a loss of bone density and, possibly, lead to fractures. If a doctor prescribes steroids the course should be closely monitored.

 

Spinal Fusion
Many people who have the Duchenne and Becker forms of muscular dystrophy can develop severe scoliosis – an S- or C-shaped curvature of the spine that develops when the back muscles are too weak to hold the spine erect. Some children who have severe cases of scoliosis can undergo spinal fusion. This surgery can reduce pain, lessen the severity of the spine curvature which helps with sitting upright and comfortably in a chair, and reduces spine curvature that can affect an individuals breathing.

 

Respiratory Care
Many individuals with muscular dystrophy also have weakened heart and respiratory muscles. As a result, they can’t cough out phlegm and sometimes develop respiratory infections that can quickly become serious. Good general health care and regular vaccinations are especially important for children with muscular dystrophy to help prevent these infections. Daily use of the CoughAssist™ Machines will help support and main good respiratory health. CoughAssist™ Machines are available for short or long term loan from Muscular Dystrophy WA. Contact us on 08 9380 3400 or piper@mdwa.org.au

 

Assistive Devices
A variety of technologies and equipment are available to sustain independence and mobility for people living with muscular dystrophy.

Some children with Duchenne muscular dystrophy may use a manual wheelchair when it becomes difficult to walk. A power wheelchair, which can be equipped to meet an individuals needs as muscle deterioration progress, is often used.

Another example is voice activated software on computers help to assist with social interaction and schooling possibilities for individuals with affected mobility and hand control.

The need for assistive equipment is an ongoing circumstance to increase an individual’s quality of life. Individuals and families in need of these technologies and equipment can ask about financial assistance that might be available. In some cases, health insurers cover the cost of these devices but other alternatives are organisations who can assist you.