Muscular dystrophy relates to a group of inherited conditions that lead to increased levels of disability as time goes on, typified by gradually weakening muscles. As this is a progressive condition and there is no cure at the moment, it can be extremely challenging for those who are suffering from it as well as those who are there to provide care.
For friends and family of those with muscular dystrophy, providing care for someone with this condition can involve people from a range of health professions including neurologists and pediatricians as well as primary care physicians. Day to day living for a person with muscular dystrophy can be difficult and become more so as the condition worsens.
Researching Muscular Dystrophy
Learning as much as you can about muscular dystrophy is important. It will arm you with the information you need to help make life better and more comfortable and will also give you confidence that you can actually cope. There will be lots of things to consider, particularly how you and the person who suffers from muscular dystrophy are going to adapt to this new situation and maintain a good quality of life.
If your child has been diagnosed with muscular dystrophy, there may be issues about when to tell them, while also coping with your own, strong emotions. Then there’s the issue of what you tell other children in the family when you find out. In the end there is no right or wrong way to feel about a condition such as this and talking amongst the family rather than bottling everything up is generally the best solution.
This is also why connecting to support networks as soon as you can will help. It means you can meet and talk to other people who are going through the same thing and get practical and emotional advice as well as not feeling so isolated. Children are pretty adaptable but even so a condition such as muscular dystrophy can lead to emotional outbursts and anger and these will need to be coped with.
Further down the line there will be issues to consider such as where your child goes to school and what choices you need to make. Support groups can help you with this as well as getting the right mobility aids when you need them. They can also help with advice on whether you need to give up work or how you make yourself available for all the appointments that you may have to attend. In many Western countries there are benefits available for those parents who decide to give up work to look after their disabled child.
The Specialist Team
Most parents who have a child with MD will be given access to what is called a multi-disciplinary team. A GP may see the odd case of muscular dystrophy in his or her lifetime so it’s important to have access to a medical team that know the latest information and research and who are there to provide specialist assistance. They will advise you to keep your child as active as possible and be involved in normal play as well as making sure that they eat healthily. The object is to live as normal a life as possible despite this being such a debilitating condition.
Living with muscular dystrophy and its progressive affects is challenging for any family. There is, however, plenty of support out there and there is no reason to feel or be isolated.