Staying independent: Life skills for living with DMD

Last updated April 14, 2025, by Susie Strachan
Fact-checked by Inês Martins, PhD

For teenagers or young adults with Duchenne muscular dystrophy (DMD), learning life skills can help you gain more control over your life while managing this progressive condition.

For parents, helping your child with DMD develop life skills, such as managing medication and appointments, following a healthy lifestyle, and building strong social connections, can empower them to manage their condition more independently. Guiding them through these skills early can also help you better support your child’s transition to adulthood, whether at school, work, or in healthcare settings.

Life skills have broader benefits as well. Being comfortable speaking up for yourself can help you get the right medical care, while having a support network can connect you to others who understand life with DMD.

Life skill guidance

Life skills are something most people learn from family, friends, and other key people. For those growing up with DMD, healthcare providers may also have an influential role.

Your family is often the first place where you learn practical skills like managing DMD medications, scheduling appointments, and handling day-to-day tasks.

Your family may model how to advocate for yourself and make decisions, then gradually shift more responsibilities to you. Your healthcare providers also may help you develop the skills to navigate your condition and medical care, offering guidance on staying healthy and managing your needs.

Physical and occupational therapists can show you how to manage mobility, use assistive devices, and conserve energy.
Speech therapists can help with communication tools if needed.
Respiratory therapists can guide you in using breathing treatments and ventilation support to manage respiratory health.
Neuromuscular specialists and social workers can also provide guidance on handling healthcare and daily living.

Organizations like the Muscular Dystrophy Association (MDA) and CureDuchenne offer resources on independent living, self-advocacy, and career planning.

DMD and muscular dystrophy organizations may also host in-person and online DMD support groups, giving you access to peer support and real-life advice on adapting to new situations.

Some DMD-specific programs focus on helping young adults explore education and work skills, including:

Parent Project Muscular Dystrophy has resources to help you, including social skills training to build independence and confidence in social situations.
CureDuchenne provides tips and support for school, helping you stay active and connected with others.
The MDA has programs to help with school accommodations, career planning, and making workplaces more accessible.

Prioritizing health and wellness

One of the most important areas where life skills come into play is managing your health. Taking an active role in your daily care — through medications, therapy, and lifestyle choices — allows you to be more in charge of your health needs and be more independent.

Track DMD medications and treatments by using reminders, apps, or a schedule.
Know what your medications do, how they work, and their possible side effects.
Keep yourself informed about new DMD treatment options and clinical trials.
Follow a diet that supports muscle and bone health while preventing weight-related complications and gastrointestinal issues.
Recognize signs of respiratory and heart issues.
Schedule regular checkups and keep a list of questions for your doctors.
Make a plan for what to do in an emergency.

Managing mobility

By developing strategies and learning the right techniques, you can continue to manage changes in mobility. Independence in mobility may look different at different stages of life, depending on how DMD affects your muscles over time.

Your care team, including physical therapists, occupational therapists, and other specialists, can help you with mobility skills, assistive devices, home adaptations, and other accessibility solutions.

A physical therapist can advise you on managing your mobility needs, such as by teaching you how to operate and adjust mobility devices like wheelchairs or scooters, as your body’s abilities change. They can also teach you proper transfer techniques to help prevent injury, whether you can do this by yourself, using a lift, or with caregiver support.

Navigating the world in a wheelchair requires knowing where accessible routes, ramps, elevators, and designated parking spots are located. Your care team can help you find wheelchair-friendly routes and spaces, which can help you move more freely in your community. This also helps with getting to appointments, social activities, school, or work.

As DMD progression affects your endurance, an occupational therapist can teach you energy conservation techniques to help you manage daily activities without overexertion. By pacing yourself, breaking tasks into manageable steps, and identifying when to rest, you can avoid tiring yourself out.

Occupational therapists can also help develop strategies for activities of daily living, which may change over time. Eventually, getting dressed might involve adaptive clothing or assistance from a caregiver, while eating could require specialized utensils that reduce strain.

Recognizing when help is needed, and knowing how to ask for it, is an important life skill that everyone should learn.

Navigating relationships

The relationships you have with those around you, whether it’s your family, caregivers, romantic partners, friends, or peers, are closely tied to being able to recognize when help is needed and how to ask for it.

Communicating your needs effectively while maintaining your independence can strengthen relationships and help you manage DMD with more confidence.

As you become a young adult with DMD, ask for advice from your family, healthcare providers, school counselors, support groups, and other young adults living with DMD on how to navigate relationships.

Some strategies for managing your relationships:

Express your needs, concerns, and feelings clearly with your healthcare providers and caregivers so that they can understand what you’re going through and how best to support you.
Communicate openly about your preferences to help your caregivers respect your autonomy while still providing the level of support you need without overstepping.
Maintain both your independence and mutual respect by establishing boundaries that allow for personal space and decision-making, helping foster healthy, respectful relationships with those who are assisting you.

Advocating for yourself

Advocating for yourself involves asking questions, staying informed about DMD treatment options, and getting the support and care you need.

Educate yourself about DMD and make informed decisions about your health by doing research. Other skills may include learning how to:

develop the confidence to ask questions, request updates on new treatments, and express concerns about your care or symptoms
recognize when you need assistance and reach out for help, whether from healthcare providers, caregivers, family, or peers
work with your DMD healthcare team to set a personal care plan aligned with your health goals, like physical therapy milestones or medication management, and regularly revisit it
understand your health insurance plan, knowing what treatments and therapies are covered, and become a self-advocate for necessary coverage.

Building community

A support network can connect you with people who understand your experiences and the challenges of growing up with DMD.

When you surround yourself with family, friends, healthcare providers, peers, and members of DMD support groups, you have access to emotional support that can strengthen your resilience.

Your support network can also provide practical advice on managing everyday tasks, like coordinating medical care or accessing DMD resources. Healthcare providers, for example, can offer guidance on the latest treatments or mobility aids, while peers living with DMD may share tips on adaptive tools or techniques they rely on.

Your community ties may help you:

become involved in DMD-related advocacy efforts, whether through fundraising, raising awareness, or pushing for policy changes
participate in events that bring together people living with DMD, their families, healthcare providers, and researchers, giving you access to the latest information about DMD.

Self-care

The physical demands and emotional challenges of DMD make taking care of yourself an essential life skill.

Maintaining your mental health may involve:

recognizing what causes you to become stressed, anxious, or depressed
learning when to seek support through counseling, peer groups, or self-care practices
listening to your body to manage fatigue by knowing when to rest and when to adjust your routine to avoid overexertion
coping with frustration, uncertainty, or setbacks through relaxation techniques, hobbies, or connecting with others
reducing stress and improving emotional balance by practicing relaxation and mindfulness techniques such as meditation, deep breathing, and writing in a journal
finding hobbies or creative outlets that spark joy and a sense of accomplishment.

Muscular Dystrophy News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.