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HELP FOR YOU

Care

Though there’s no cure for muscular dystrophy just yet, practitioners are working to improve muscle and joint function and to slow muscle deterioration.

Please note that we do not provide financial or medical advice, diagnosis or treatment. We will always recommend you seek the advice of a specialist or other qualified professional with any questions you may have regarding your financial situation or medical condition. Never disregard professional medical advice, or delay in seeking advice because of something you may have read on this site or any of the other links.

After diagnosis a team of medical specialists can work with you and your family. That team will likely include a neurologist, orthopaedist, pulmonologist, physical and occupational therapist, nurse practitioner, cardiologist, registered dietician and a social worker.

As muscular dystrophy is progressive, individuals will pass through different stages require different kinds of treatment. During the early stages physical therapy, joint bracing and steroid medication can often be used and during the later stages, doctors may use assistive devices including:

  • Physical therapy and bracing to improve flexibility

  • Manual and power wheelchairs and scooters to improve mobility

  • Ventilator systems to support breathing and respiratory function

  • Information technology to help perform routine daily tasks and help with interaction

  • Specialised health beds to assist with movement throughout the night and during sleep


Physical Therapy and Bracing

Physical therapy has been known to maintain muscle tone and reduce the severity of joint contractures through exercises that keep the muscles strong and the joints flexible. It is important not to overdo physical activities though.

A physical therapist can use bracing to help prevent or manage joint contractures (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 such as weight gain, which can put even greater strain on an individual’s 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, it is recommended the course be closely monitored.

Spinal Fusion

Many people who have Duchenne or Becker 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 surgery, which can reduce pain and lessen the severity of spinal curvature. This helps with sitting upright and comfortably in a chair, and reduces spinal curvature that can affect an individual’s breathing.

Respiratory Care

Many individuals with muscular dystrophy 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 maintain good respiratory health. CoughAssist™ machines are available for short or long term loan from us – just ask.

Assistive Devices

A variety of technologies and equipment are available to sustain independence and mobility.

People with muscular dystrophy may use a manual wheelchair when it becomes difficult to walk. A power wheelchair is often used as it can be equipped to meet an individual’s needs as deterioration progresses.

Voice activated software on computers can help with social interaction and schooling for those with affected mobility and hand control.

Assistive equipment can improve your quality of life. Those 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 there are other organisations who may be able to assist you as well, which we can talk with you about.

Information for people who are dependent on ventilator support

We are grateful to Dr David Hillman from Pulmonary Physiology at Sir Charles Gairdner Hospital and Director of the West Australian Sleep Disorders Research Institute, for the following advice about ventilator support machines.

Please be aware that overnight power failure can occur. Ventilator malfunction and accidental disconnection of the ventilator hose from the mask or machine can also happen so please ensure that you have a method of detecting these problems and responding to them quickly. 

Where power failure does occur use the wheelchair or battery back-up systems available to you.  In the case of ventilator failure use your second ventilator.

The following can help:

  • Household power failure alarm

  • Ventilator alarm either inbuilt or as a separate device plugged into the breathing system (discuss with your ventilator supplier)

  • Communication method with carer

  • Call bell with easily activated switch

  • Voice communication (e.g. intercom)

  • Purchase an uninterrupted power supply

  • Ensure that you check that the alarms are working on a regular basis

  • Check that your back-up battery is charged and ready for use in case it is needed