Caring for a Loved One With Muscular Dystrophy

Remain Devoted Through Knowledge, Support, and Self-Care

Caring for A Child With Muscular Dystrophy
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Muscular dystrophy is a disease of muscle weakening and loss that worsens over time. While there is no cure, there are therapies to help manage the disease—and this is where caregiving comes into play.

Whether you are a parent or loved one, caring for someone with muscular dystrophy requires tremendous physical, mental, and emotional stamina. But as you embark on (or continue) your caregiving journey, know you are not alone.

Others are on this journey too, and still others are willing to go along with you.

That said, here are three tidbits to consider as you navigate this unique experience.

Tidbit #1: Gain Knowledge

Knowledge of muscular dystrophy will give you some control over your vulnerable and challenging caregiving role. You will be able to predict and respond more easily to your loved one's challenges.

With that, here are a few basic facts to get your mind churning.

There Are Different Types of Muscular Dystrophy

In muscular dystrophy, one or more genes that control normal muscle function are mutated (the DNA sequence is altered). Since various genes can be mutated, there are different types of muscular dystrophies.

For example, in Duchenne muscular dystrophy (the most common type), the dystrophin gene is mutated. Unfortunately, for some muscular dystrophies, the precise gene or genes affected have not yet been identified.

Muscular Dystrophy Is Inherited

The mutated gene that causes muscular dystrophy is passed from one or both parents to a child. The specific pattern of inheritance (how the gene is passed to the child) depends on the location of the gene. For example, the mutated gene that causes Duchenne muscular dystrophy is located on one of the X chromosomes carried by the mother.

This pattern of inheritance is called X-linked recessive.

Muscular Dystrophy Causes Muscle Weakness

The primary symptom of muscular dystophy is muscle weakness. Some types of muscular dystrophies cause other symptoms too, like heart problems or cognitive difficulties.

The severity of symptoms varies, meaning some people develop severe disability, requiring a wheelchair for mobility and ventilatory support for survival, whereas others have only mild disabilities.

Lastly, the age of onset of muscle weakness (or the start of muscular dystrophy) varies—some beginning at birth while others begin in childhood, adolescence, or even adulthood.

Tidbit #2: Get Support

If you are caring for a child or adult with muscular dystrophy, be sure to reach out for support.

Family and Friends

Everyone needs a break, whether you are a parent caring for a child with muscular dystrophy or a loved one caring for an adult. In fact, family, friends, and even volunteers within your community, often want to help but don't know how.

Be specific, devise a schedule, and do not feel guilty. Everyone needs time to relax and self-nurture.

Outside Help

Consider getting an outside (or live-in) personal care assistant who can help with bathing, going to the bathroom, getting in and out of bed, dressing, and cooking.

You may also consider hiring a nurse (or even scheduling willing volunteers) at night to watch your child or loved one, so you can obtain uninterrupted sleep.

Often times, people find that outside help promotes independence for both sides—your child or loved one will likely appreciate this change.

Medical Team

Depending on the type of muscular dystrophy your child or loved ones has, there will be a need for healthcare appointments, often multiple ones.

For instance, your child or loved may have a regularly scheduled physical therapy appointment, either at a clinic or within your home.

Other potential healthcare appointments may include:

  • Doctor visits (for example, pediatrician, neuromuscular specialist, orthopedic surgeon, and a cardiologist)
  • Undergoing various tests (for example, lung function testing, bone mineral density tests, and x-rays of the spine to check for scoliosis)
  • Obtaining vaccinations (for example, the yearly flu shot and the pneumococcal vaccines)
  • Nutrition and genetic counselor consultation
  • Social worker visits to open assistive devices like wheelchairs, ventilators, and lifts

During appointents, be open to discussing concerns and asking questions. Reaching out to your loved one's medical team for support and guidance is expected. In the end, open communication amongst all parties will optimize care and quality of life.

Muscular Dystrophy Association

The Muscular Dystrophy Association (MDA) is a remarkable organization that provides a number of resources for caregivers, including online articles and discussion groups, support programs, and a recommended reading list.

In addition to caregiving resources, they offer programs like the annual MDA summer camp, where children with muscular dystrophy can enjoy a week of fun. This free opportunity (funded by supporters of the MDA) also offers parents (and other caregivers) a much deserved break.

Tidbit #3: Care For Yourself

Self-care is extremely important as a caregiver. First, it's important to care for your own body. This means ensuring you are getting exercise, eating nutritiously, and seeing your doctor for regular check-ups.

If you are having difficulty finding the time to exercise or are simply exhausted at the end of the day, try incorporating exercise into your everyday life. For example, you can try tv-based workouts at home or go for long daily walks in nature or at a local indoor track with your loved one, if possible.

In addition to attending to your physical health, be sure to care for your emotional well-being. Depression is common among caregivers, so watch for symptoms of depression like a persistently low mood, problems sleeping, a loss or gain of appetite, or feelings of hopelessness and guilt. If you are worried about depression, see your doctor or mental health professional.

To combat the stress and demand of being a caregiver, as well as share the rewarding side, consider joining a support group for caregivers. You may also consider engaging in mind-body therapies that can promote relaxation and stress relief, like yoga or mindfulness meditation.

A Word From Verywell

Caring for a loved one with muscular dystrophy is not easy, but many do find a silver lining, whether that's gaining a deeper, healthier perspective on life, becoming more spiritual, or simply finding beauty in the small pleasures of everyday life.

Remain resilient and devoted in your caregiving journey, remember to nurture your own needs, and reach out to others for a helping hand.


Darras BT. (2017). Clinical features and diagnosis of Duchenne and Becker muscular dystrophy. Patterson MC, Firth HV, eds. UpToDate. Waltham, MA: UpToDate Inc.

Landfeldt E et al. Quantifying the burden of caregiving in Duchenne muscular dystophy. J Neurol. 2016 May;263(5):906-15.

Muscular Dystrophy Association. (n.d.). Caregivers.

National Institute of Neurological Disorders and Stroke. (2018). Muscular Dystrophy Information Page.