Living with DMD: A Caregiver's Guide to Daily Life

Living with Duchenne muscular dystrophy (DMD) can bring many challenges each day. As a caregiver, you play a vital role in assisting your child so they can live as fully and comfortably as possible. Here are some practical tips to support you in making daily life a little easier while living with DMD.

How to make your home more accessible

As DMD progresses, most people living with DMD will eventually need to use a wheelchair. You will want to make it as easy as possible for your child to move around your home. Making a few simple changes can help your child stay safe and independent for longer. Here are several ways you can assist with that:^1,2

• Clear pathways – Make sure hallways and rooms are free of clutter. Remove throw rugs that could cause trips. Arrange furniture so there is plenty of space to move around with a walker or wheelchair.
• Ramps and lifts – If your home has stairs, consider adding ramps or a stairlift. A ramp can make entering your home in a wheelchair much easier, and a stairlift can help your child move between floors safely.
• Bathroom modifications – The bathroom can be a tricky place. Grab bars installed near the toilet and in the shower can provide extra support. A shower chair or bench can make washing easier and safer. Consider a raised toilet seat to make sitting and standing less difficult.
• Doorways – Widen doorways if possible. This will make it easier for a wheelchair to pass through.
• Switch out door knobs – Lever-style door handles are easier to grip than round knobs.

Simple ways to assist with daily activities

Many everyday tasks can become harder when living with DMD. Here are some ways you can support and assist your child:³

• Getting dressed – Choose clothes that are easy to put on and take off. Look for loose-fitting clothes with elastic waistbands or Velcro closures instead of buttons and zippers. There are also adaptive clothing options designed to assist people with limited mobility.
• Eating – Eating can become tiring. Offer smaller, more frequent meals. Cut food into bite-sized pieces. Special utensils with larger handles or angled designs can be easier to hold. Non-slip mats under plates can prevent them from sliding.
• Bathing – AAs mentioned before, shower chairs and grab bars offer great support. Use a long-handled sponge to assist with washing hard-to-reach areas. Consider using a handheld showerhead so your child can control the water flow.
• Communication – If speech becomes difficult, explore communication aids. These can range from simple picture boards to electronic devices that speak for your child.

Promoting independence while living with DMD

Even with the challenges of living with DMD, it is important to encourage your child's independence as much as possible.^3,4

• Focus on abilities – Celebrate what your child can do. Find activities and hobbies that they enjoy and can participate in. This builds confidence and self-esteem.
• Involve your child in decisions – As they get older, include your child in decisions about their care. This helps them feel a sense of control over their own life.
• Encourage problem-solving – When your child faces a challenge, support them by helping them think through possible solutions instead of immediately doing it for them.
• Explore how technology can help – Tablets, voice-activated devices, and adapted gaming controllers can provide opportunities for learning, communication, and fun.

Finding support for your family

Living with DMD requires ongoing adjustments and community support. By making changes to your home, finding helpful ways to assist with daily tasks, focusing on energy conservation, and promoting independence, you can support your child in living a more comfortable and fulfilling life. Remember to connect with other families and professionals for additional support and ideas.