There are many different suggested methods for what to do when your child or a loved one is diagnosed with muscular dystrophy. It’s impossible to suggest that there is one single model for how to provide support and care. Each case is different and depends entirely on how serious the disease is; the social and environmental context of the individual and their support network; and what the medical recommendations are.
However, there are important themes to remember when considering how to care for a person with muscular dystrophy.
Environment and mobility
It can be incredibly frustrating for the individual to experience their muscles and strength weakening. What contributes greatly to that frustration is the loss of mobility and how accessible the surrounding environment is.
Consider what changes would need to be made in your home to ensure that the person with MD can move around as independently as possible, and not find themselves unable to be in certain parts of the house.
Special equipment and additions, such as wider doorways and ramps, can help make the environment friendlier, but it’s also important to consider whether the home’s shared spaces are still able to be shared by everyone.
For some, it might be painful to acknowledge that hampered mobility will require some form of intervention — braces, wheelchair etc. — to be overcome. However, it is better for the person with MD to have mobility using help, and benefit from the independence it gives.
Diet and health
It’s important for the individual to stay at a healthy weight throughout. Obesity is a side effect of muscular dystrophy because of increasing immobility, so it’s important to ensure that the person is eating the right foods.
Maintaining a normal weight is also essential to preventing putting strain on weakening muscles.
Good diet also contributes to strengthening immune systems — though they are not necessarily impacted by the disease, children with MD are highly susceptible to colds, which could lead to bronchitis and pneumonia. This can be dangerous, as muscle weakness could lead them to not being able to cough effectively.
Colds should be treated swiftly, and routine immunisations are recommended.
Staying fit and active is also crucial to improving the quality of life for individuals with muscular dystrophy.
Participating in physical activity physically and emotionally benefits people with MD. Low impact sports can help improve muscle strength and swimming is one of the best activities for individuals with the disease.
Emotional and social
Caring for someone with muscular dystrophy is not an easy task. It’s hard to watch someone lose their strength, and it’s also hard to be the person with gradually weakening muscles.
Maintaining a high level of awareness for open and honest connection is critical to ensuring the happiness of the individual and their family.
At times, the inclination can be to protect the person with MD from the outside world. This can be frustrating to them, as they could feel stifled and find it difficult to engage socially.
In this case, it’s important to give the individual the independence and space to explore their own emotions, capabilities and creativity, while being encouraged socially by surrounding loved ones.
It’s important to visit a doctor, counsellor or social worker, who can help develop a treatment plan as well as facilitate the emotional and social changes that need to be made.
Every set of circumstances around someone with muscular dystrophy is different, and so advice and guidance should be given to support that context. However, remember that you are not alone and that there are organisations like the Muscular Dystrophy Foundation of South Africa, as well as support groups and networks that will give you as much support as they can.
Links / References:
WebMD – Muscular Dystrophy. Retrieved from http://www.webmd.com/children/what-is-muscular-dystrophy#4
My Child Without Limits – Can Muscular Dystrophy Be Prevented? Retrieved from http://www.mychildwithoutlimits.org/understand/muscular-dystrophy/can-muscular-dystrophy-be-prevented/
WebMD – Understanding Muscular Dystrophy – Diagnosis and Treatment. Retrieved from http://www.webmd.com/children/understanding-muscular-dystrophy-treatment#2
University of Maryland Medical Center (UMMC) – Muscular dystrophy. Retrieved from http://umm.edu/health/medical/ency/articles/muscular-dystrophy
Parent Project Muscular Dystrophy – Testing for Duchenne. Retrieved from http://www.parentprojectmd.org/site/PageServer?pagename=understand_about_test
The Muscular Dystrophy Association (MDA) – Help Through Services and Support. Retrieved from https://www.mda.org/services
Parent Project Muscular Dystrophy – Managing Daily Life. Retrieved from http://www.parentprojectmd.org/site/PageServer?pagename=Care_elements_daily
Parent Project Muscular Dystrophy – Coping with Duchenne. Retrieved from http://www.parentprojectmd.org/site/PageServer?pagename=Care_emotional_coping
MDSA – We Support Affected People & Their Families by Offering – SOCIAL INTEGRATION & EMOTIONAL SUPPORT SERVICES. Retrieved from http://www.mdsa.co.za/