Practical Tips for Managing Day-to-Day Life With DMD

Living with Duchenne muscular dystrophy (DMD) can bring many challenges each day. As a caregiver, you play a very important role in helping your child live as fully and comfortably as possible. Here are some practical tips to make daily life a little easier.

Making your home easier to get around

As DMD progresses, all people with DMD will need to use a wheelchair eventually. You will want to make it as easy as possible for your child to move around the home. Making some changes can help your child stay safe and independent for longer. Here are some ways you can do 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 using a wheelchair much easier to get into your home, 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.

Helping with daily activities

Many everyday tasks can become harder with DMD. Here are some ways you can help: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 for 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 – As mentioned before, shower chairs and grab bars are helpful. Use a long-handled sponge to help 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

Even with the challenges of 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, help 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.

Be patient

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