As the condition of someone with muscular dystrophy (MD) progresses, you may reach a point where you can no longer see to their needs personally. Trying to do so may be damaging for both you and them, and others are better positioned to provide certain kinds of care.
Depending on the severity and type of MD, you may need to make use of various professionals’ expertise:
• Professional carers: If you are not physically or emotionally able to continue with the demands of looking after a person with advanced MD, and this is financially feasible, it may be the best plan for a professional carer to help out or take over.
• Your doctor: It is important that someone with MD gets regular checkups. You should consult with a doctor about any therapies and medication. In the later stages, respiratory infections often occur, so it’s important that the person in your care gets a pneumonia vaccine and has regular flu shots.
• Specialist surgeons: Tendon surgery can loosen joints, and surgery can also be done to correct spinal curvature if it’s interfering with breathing. If there are heart problems, a pacemaker may be required.
• Physiotherapists and occupational therapists: A person with MD can learn exercises to improve their flexibility and the mobility of their joints. You may also need help with choosing and using mobility aids and devices to help with breathing.
• Psychotherapists or counsellors: There may be psychological problems such as depression – in yourself or the person in your care – that require professional attention.
• Genetic counsellors: It is important for family members to understand the inheritance patterns involved, and the risk of developing MD or passing it on to unborn children.
• Legal and financial advisers: It may be that the person in your care will outlive you, and will continue to need care after you are gone. Thus it is necessary to draw up a will, appoint guardians, and make sure your dependant is financially taken care of