Muscular dystrophy or MD is a group of genetic diseases that causes muscles to waste away. There is no known cure for MD, although certain treatments may help or slow the symptoms.
The severity of disability, and the speed at which it gets worse, depends on the type of MD. The most common type, Duchenne, which affects mostly boys from around the age of five, results in rapidly worsening disability and shortened life. Other types are much milder.
People with MD need to be cared for when their disability progresses to the point that it hinders daily functioning. They will need assistance with moving around, basic tasks like washing, and emotional support. A carer may be a family member, a friend or professional.
Caring for a loved one can be very rewarding, but it is not a minor commitment. It can be psychological and physically draining, and requires a lot of time and financial resources. Carers risk emotional exhaustion and burnout.
Changing roles
Because MD is progressive (it becomes worse), you’ll find that your role as a caregiver changes over time. At the time of diagnosis, which can be very upsetting for patient and family, the support you provide will be primarily emotional.
As muscles weaken, a person will require more assistance with daily tasks such as bathing, dressing and moving around. Your role will become more complex and physically intensive, and you may struggle to handle it alone. It will become increasingly important to build a support network of friends, family and healthcare professionals.
With reduced mobility, particularly once a person is in a wheelchair, problems emerge that require special care:
• Frequent falls are a symptom of muscle weakness. Adding to the problem, the bones become soft or brittle. Fractures may happen when someone falls out of a wheelchair, or when they are moved in and out of the chair. A physiotherapist can teach you safe techniques for lifting patients.
• It can become impossible for someone with MD to turn over in bed to make themselves comfortable. Carers need to turn them several times a day.
• As mobility decreases, people with MD need less food. A carer must monitor food intake so the patient does not put on too much weight. Obesity is bad for the patient and also makes it harder for caregivers to move or clean them. Advice from a dietician can be useful.
• Constipation may worsen, causing discomfort. Carers may have to administer enemas or laxatives. Proper bowel habits and diet are very important.
You may discover, as time goes on, that your home is not ideal. It may have no wheelchair access, or the bathroom may not be convenient for helping someone to bathe. You may wish to modify your house, or even move. Occupational therapists can assess a living environment and give advice on what equipment is needed, such as ramps, handrails and levers on taps. The person with MD will need to learn how to use this equipment.
If you are caring for a child with MD, your role will change both because the child matures and because their condition worsens:
• Parents may find it very hard to explain things to a child. It is generally advised that you be open and honest, answer questions frankly, and discuss the situation in an age-appropriate manner. It may not be necessary to tell very young children all the details.
• Questions about death usually arise when the child is a little older. Although life expectancy in Duchenne is reduced, nobody can say exactly how long an affected person’s life will be. Children should be encouraged to set goals for the future.
• When it is time to start school, if your child can handle an integrated setting with kids who do not have a disability, this is encouraged. Later, it may be necessary for a child to attend a special school, at least some of the time. Inform the school of your child’s needs.
• Children need social interaction with other young people – with MD as well as without. Peer groups and friendships are particularly important for teenagers and young adults.
• As affected children are generally living longer with modern medical care, it is becoming increasingly important to plan for work after school. You may be able to help with finding a suitable job and an understanding employer.
