Living Boldly with Muscular Dystrophy

What muscular dystrophy is and what “living boldly” can mean

What muscular dystrophy is

Muscular dystrophy is not just one condition. It is a group of more than 30 genetic diseases that cause muscles to become weaker and lose tissue over time. These conditions affect the muscles you use to move, and some types also affect your heart, lungs, and other organs.

The specific type of muscular dystrophy you or your loved one has will shape:

• Which muscles are affected
• When symptoms start, from infancy through adulthood
• How quickly weakness progresses
• Whether other organs are involved
• What treatments and monitoring are most important

Common types include Duchenne muscular dystrophy, Becker muscular dystrophy, limb-girdle muscular dystrophy, facioscapulohumeral muscular dystrophy, myotonic dystrophy, congenital muscular dystrophy, and others.

There is currently no cure, but medicines, therapies, and support services can slow the course for some types and help you live more fully.

How common muscular dystrophy is

Muscular dystrophy is considered rare, but for the families it touches, it feels anything but rare.

• When all types are combined, muscular dystrophy affects roughly 16 to 25 people per 100,000 in the United States.
• A large meta analysis estimated that muscular dystrophy overall affects about 3.6 people per 100,000 worldwide, with higher prevalence in the Americas.
• Duchenne muscular dystrophy, the most common severe childhood form, affects about 1 in every 3,600 male infants.

Knowing that there are others walking a similar path can make it easier to seek out resources, research, and community.

What “living boldly” can look like

Living boldly with muscular dystrophy is not about pretending the disease is easy. It is about:

• Staying involved in school, work, and hobbies as much as possible
• Asking for help early, instead of waiting until a crisis
• Using equipment and adaptations as tools of independence, not signs of “giving up”
• Making room for grief and fear, while also protecting joy, connection, and meaning

If you are living with muscular dystrophy, or caring for someone who is, you are already doing something brave. The rest of this guide focuses on practical ways to make that courage safer and more sustainable.

Everyday life with muscular dystrophy

Managing movement and energy

The main symptom of most muscular dystrophies is muscle weakness that gradually gets worse. This can lead to difficulty walking, climbing stairs, lifting objects, or staying balanced. Contractures, joint stiffness, falls, and fatigue are also common.

Everyday strategies that may help include:

• Energy pacing
  • Break tasks into smaller steps with rest breaks.
  • Sit when you can, such as during grooming, cooking, or showering.
  • Prioritize what truly matters each day instead of trying to do everything at once.
• Protecting your balance
  • Use handrails, grab bars, and non-slip mats at home.
  • Keep hallways and floors clear of cords and clutter.
  • Use proper footwear and consider physical therapy to work on safe transfers and walking.
• Accepting mobility aids early
  • A cane, walker, or wheelchair is not a failure. It is a tool that can help you stay active longer, get outside more often, and avoid injuries.

A physical therapist or rehabilitation specialist can create a plan that balances movement with safety and helps delay complications like contractures and scoliosis.

Protecting your heart and lungs

For many types of muscular dystrophy, heart and breathing muscles are affected over time. This can lead to:

• Shortness of breath, especially when lying flat
• Frequent respiratory infections
• Morning headaches, daytime sleepiness, or poor sleep
• Palpitations, chest discomfort, or heart failure symptoms

Your care team may recommend:

• Regular heart monitoring and medicines such as ACE inhibitors or beta blockers to slow heart muscle damage
• Vaccinations and early treatment for respiratory infections
• Breathing tests, cough assistance devices, and noninvasive ventilation (like BiPAP) if your breathing muscles weaken

It can feel frightening to think about heart and lung complications, but planning early often leads to better quality of life and more time at home instead of in the hospital.

Staying engaged in school, work, and hobbies

Living boldly includes staying connected to the things that give you purpose.

You might consider:

• School and education
  • Ask about 504 plans or individualized education programs (IEPs) so your child can have accessible classrooms, rest breaks, and support with mobility or communication tools.
  • Consider remote options or hybrid schedules if fatigue or travel becomes difficult.
• Work and employment
  • Explore workplace accommodations such as flexible schedules, ergonomic setups, remote work, or reassignment to less physically demanding roles.
  • Vocational rehabilitation services can help you match your strengths with job opportunities.
• Joy and hobbies
  • Adapt activities you love instead of abandoning them. For example, switch from hiking to accessible trails or from playing sports to coaching, announcing, or online leagues.
  • Use technology, support workers, and creative problem solving to stay engaged in faith communities, clubs, or volunteer work.

Even small adjustments can help you feel more like yourself, instead of feeling defined by medical appointments.

Emotional health for you and your family

Making space for grief and hope

A diagnosis of muscular dystrophy changes life for everyone involved. Parents may grieve the future they imagined for their child. Adults living with muscular dystrophy may grieve the independence or body they once had.

Common emotional responses include:

• Shock, numbness, or disbelief
• Anger at the diagnosis or the healthcare system
• Guilt, especially in genetic conditions, even though no one caused this on purpose
• Anxiety about the future or upcoming losses
• Moments of joy, pride, and gratitude that feel complicated or bittersweet

These reactions are not a sign of weakness. They are normal responses to a serious, life changing condition. Many families find it helpful to work with a counselor, social worker, or psychologist who understands chronic illness.

Finding support for parents, partners, and siblings

Muscular dystrophy affects the person with the diagnosis, and also the entire circle around them.

Support for loved ones might include:

• Siblings
  • Honest, age appropriate explanations about the condition
  • One-on-one time that is not centered on medical issues
  • Support groups for siblings of children with chronic illnesses
• Partners and spouses
  • Couples counseling to navigate changing roles and intimacy
  • Practical help with finances, benefits, and respite care
• Extended family and friends
  • Clear guidance on how they can help, such as rides, meals, or childcare for siblings
  • Shared updates so you do not have to repeat heavy news many times

If you do not have a strong support system right now, it may help to connect with neuromuscular clinics, local disability organizations, or online communities recommended by your clinicians for safe, moderated spaces.

When to consider counseling or support groups

You might benefit from professional mental health or peer support if:

• You or your child are losing interest in activities you once enjoyed
• Sleep, appetite, or school or work performance are changing significantly
• You feel hopeless, overwhelmed, or numb most days
• There are thoughts of self harm or wishing you would not wake up

In these moments, reaching out is a sign of strength. There are providers and peer groups who understand neuromuscular disease and can walk beside you.

Building your muscular dystrophy care team

Neuromuscular specialists and your core medical team

Managing muscular dystrophy is complex. Most people do best with a team that may include:

• Neurologist or neuromuscular specialist
• Primary care clinician
• Cardiologist
• Pulmonologist or respiratory specialist
• Physical and occupational therapists
• Speech language pathologist, if swallowing or speech are affected
• Dietitian
• Social worker or care coordinator

They work together to monitor:

• Muscle strength and function
• Breathing and heart function
• Nutrition and bone health
• Learning, behavior, or mental health concerns

Regular visits can feel exhausting, but they also create opportunities to prevent or catch complications early.

Rehabilitation and therapy

Rehabilitation is central to living boldly with muscular dystrophy.

Your team may recommend:

• Physical therapy to stretch and strengthen muscles safely, support balance, and delay contractures
• Occupational therapy to adapt daily activities such as dressing, bathing, and eating, and to recommend assistive devices
• Speech and swallowing therapy if speech becomes less clear or swallowing is difficult
• Respiratory therapy to teach breathing exercises and use of cough assist or ventilation devices

These therapies are not about “fixing” you or your child. They are about protecting comfort, safety, and independence.

Planning for emergencies and hospital visits

You can ask your team to help you create a simple emergency plan that covers:

• Which hospital is best prepared for neuromuscular conditions
• Which medicines are safe or should be avoided
• Baseline breathing numbers and what changes would need urgent review
• Who should be contacted in a crisis

Carrying a brief summary letter, a list of current medicines, and emergency contact information can make urgent visits less stressful for everyone.

Equipment, home adaptations, and support

This is where many families feel most overwhelmed. Muscular dystrophy often brings a long list of equipment and home changes, yet each item is ultimately about comfort, safety, and freedom.

Mobility and positioning

Over time, you may hear about:

• Manual or power wheelchairs
• Seating systems with cushions and head supports
• Standing frames or tilt-in-space chairs
• Hospital beds with adjustable positioning
• Transfer aids such as ceiling lifts or slide boards

The right combination can reduce pain, prevent pressure injuries, ease caregiving, and help you stay engaged in your community.

If you are unsure where to start, a rehabilitation team can assess your home and daily routines, then recommend equipment that fits your needs and space.

Advocates at Understood Care can also help you explore options and work with payers and suppliers. You can learn more on the Mobility Equipment page at Understood Care:
https://understoodcare.com/care-types/mobility-equipment

Breathing support and cough assistance

As breathing muscles weaken, you may need:

• Cough assist devices to clear mucus
• Noninvasive ventilation at night, such as BiPAP
• Supplemental oxygen in specific situations
• Backup power plans for devices that run on electricity

These devices can feel intimidating at first, but many families describe them as life changing once they are in place. They can ease breathlessness, reduce infections, and allow more comfortable sleep.

Help navigating insurance, approvals, and logistics

Insurance rules and paperwork for equipment can be complex. This is often where families feel alone and exhausted.

Care advocates can:

• Help gather prescriptions, letters of medical necessity, and supporting records
• Coordinate communication between your neurologist, pulmonologist, therapist, and equipment company
• Track approvals, appeals, and delivery dates
• Identify community resources, nonprofit programs, or grants that might help with costs

If dealing with all of this on your own feels impossible, you can learn more about Care Coordination and Appointments support from Understood Care:

• https://understoodcare.com/care-types/care-coordination
• https://understoodcare.com/care-types/appointments

A real story of courage and community

One member of our team shared a story that stays with many of us.

Close friends of hers, who she now considers family, learned that their young son had Duchenne muscular dystrophy when he was around 10 years old. The diagnosis changed everything. They navigated specialists, tests, new medicines, and a future that suddenly felt uncertain.

She calls him her hero. She also calls his parents her heroes, because they did everything they could to make his life feel as normal and joyful as possible:

• Making sure he could still go to school and spend time with friends
• Learning how to lift and transfer him safely so he could join in family outings
• Fighting with insurance for a comfortable bed, a supportive wheelchair, cushions to ease pressure, and breathing equipment when he needed it
• Rearranging their home so that his room and bathroom were accessible
• Staying at his side during long nights when pain, breathing, or anxiety made sleep hard

Muscular dystrophy changed their lives once when they heard the diagnosis, and then again when he died. Their grief was deep, but so was their pride in how fully he had lived and how much he had been loved.

If you are a parent or an adult living with muscular dystrophy, you may recognize parts of this story. You may be fighting for equipment, navigating pain and loss of independence, and trying to protect a sense of normal life amid hospital stays and tests.

You do not have to do that fighting alone. Support services, neuromuscular clinics, and care advocates can walk beside you so you can spend more time being family and less time being case manager.

When to call your clinician or seek urgent help

Your care team should give you specific guidance based on your situation and type of muscular dystrophy. In general, call your clinician promptly for any of the following:

• New or worsening shortness of breath, especially when resting or lying flat
• Needing more pillows or elevation to sleep comfortably
• More frequent respiratory infections or difficulty clearing mucus
• New or worsening chest discomfort, palpitations, or fainting
• New or quickly increasing swelling in the legs, ankles, or abdomen
• Sudden changes in walking ability, severe falls, or new back pain
• Trouble swallowing, choking, or unexplained weight loss
• Depressed mood, hopelessness, or thoughts of self harm

Seek emergency care or call emergency services right away if:

• Breathing becomes very hard or you cannot speak in full sentences
• Lips or fingertips turn blue or gray
• Chest pain is severe, crushing, or accompanied by sweating or nausea
• There is sudden confusion, inability to wake, or seizures
• You have serious injury from a fall, such as head trauma or suspected fracture

It is always better to ask for help early than to wait and worry at home.

Talk with your care team and get coordinated support

Living boldly with muscular dystrophy is easier when you are not trying to coordinate everything by yourself.

You can:

• Bring a current list of medicines, equipment, and allergies to each visit
• Ask what the main goals of treatment are for the next six to twelve months
• Write down questions between visits and bring them to your appointments
• Ask which symptoms mean “call the office soon” and which mean “go to the emergency department now”

If you want help organizing appointments, sharing updates across all your providers, and staying on top of equipment and paperwork, an advocate can coordinate your care and prepare you for visits. Learn more on the Understood Care Care Coordination and Appointments pages:

• https://understoodcare.com/care-types/care-coordination
• https://understoodcare.com/care-types/appointments

You deserve a care team that sees the whole picture, not just one clinic note at a time.

FAQ: Living boldly with muscular dystrophy

Can you live a long life with muscular dystrophy?

Life expectancy with muscular dystrophy depends heavily on the type and on access to modern cardiac and respiratory care. Some types, such as certain adult onset muscular dystrophies, may have little effect on lifespan, while others, such as Duchenne muscular dystrophy, can shorten life if untreated.

The good news is that survival has improved over the past few decades thanks to better heart medicines, ventilation support, and multidisciplinary care. Ask your neurologist and cardiologist about your specific prognosis and which steps are most important for you.

How do you live a “normal” life with muscular dystrophy?

“Normal” may look different, but a full and meaningful life is absolutely possible. Many people with muscular dystrophy attend school, work, build families, travel, and pursue passions with the help of:

• Adaptive equipment and accessible environments
• Flexible schedules and remote options
• Supportive employers or educational institutions
• Strong care teams and advocates

If you feel that medical tasks are crowding out everything else, it may help to talk with a social worker or advocate about ways to simplify logistics so you can focus more on living, not just managing.

What lifestyle changes matter most with muscular dystrophy?

There is no diet or exercise program that can cure muscular dystrophy, but some habits can protect your health:

• Following your therapy programs without overexerting
• Staying as active as your team recommends, while respecting fatigue
• Eating a balanced diet and maintaining a healthy weight
• Staying up to date on vaccines and infection prevention
• Avoiding tobacco and limiting alcohol, especially if your heart is affected

Your clinicians can help adapt general health advice to your specific abilities and risks.

How can caregivers avoid burnout?

Caregiving for muscular dystrophy is a marathon, not a sprint. Caregivers may be lifting, transferring, coordinating care, managing equipment, and holding emotional space for the entire family.

To reduce burnout, consider:

• Scheduling regular respite care, even for a few hours at a time
• Sharing tasks among family, friends, or paid support when possible
• Setting up automatic refills, deliveries, and appointment reminders
• Joining caregiver support groups, locally or online, to talk with others who understand

If you notice persistent exhaustion, irritability, sleep problems, or feelings of resentment or hopelessness, it is a sign that you deserve more support, not that you are failing.

When should we talk about advanced care planning?

Advanced care planning is about making sure your values guide future medical choices. It becomes especially important when heart and breathing muscles are involved.

You might start these conversations when:

• You or your child begin to need night time breathing support
• New heart problems are diagnosed
• Hospital stays become more frequent
• You find yourself wondering “what would we want if things got worse”

These talks can include choices about ventilation, resuscitation, and hospital versus home based care. Having the conversation does not mean you are giving up. It means you are planning ahead so that your care team can honor what matters most to you.

References

• Mayo Clinic. Muscular dystrophy: Symptoms and causes.
  https://www.mayoclinic.org/diseases-conditions/muscular-dystrophy/symptoms-causes/syc-20375388
• MedlinePlus. Muscular dystrophy.
  https://medlineplus.gov/musculardystrophy.html
• Cleveland Clinic. Muscular dystrophy: What it is, symptoms, types and treatment.
  https://my.clevelandclinic.org/health/diseases/14128-muscular-dystrophy
• Cleveland Clinic. Duchenne muscular dystrophy (DMD): What it is and symptoms.
  https://my.clevelandclinic.org/health/diseases/23538-duchenne-muscular-dystrophy-dmd
• Centers for Disease Control and Prevention. Muscular dystrophy.
  https://www.cdc.gov/muscular-dystrophy/index.html
• Journal of Orthopaedic Surgery and Research. Global prevalence of Duchenne and Becker muscular dystrophy: a systematic review and meta analysis.
  https://josr-online.biomedcentral.com/articles/10.1186/s13018-022-02996-8
• Understood Care. Mobility Equipment.
  https://understoodcare.com/care-types/mobility-equipment
• Understood Care. Care Coordination.
  https://understoodcare.com/care-types/care-coordination
• Understood Care. Appointments.
  https://understoodcare.com/care-types/appointments

This content is educational and is not a substitute for medical advice. Always consult your healthcare provider for personalized care.