Living with muscular dystrophy
Fact-checked by Living with muscular dystrophy (MD) can gradually change the way the body moves and functions.
Muscle weakness may make everyday tasks — like walking, lifting objects, or even breathing — more challenging over time. Simple activities such as dressing, eating, or getting around the house can take extra effort and energy.
Understanding how MD affects your daily routines or those of your child or loved one, and exploring practical strategies, can help you or them maintain independence, conserve energy, and preserve overall well-being.
How does MD affect daily living?
Daily life with MD can be affected in a variety of ways because your or your loved one’s weakened muscles have to work harder for basic movements.
For instance, muscle weakness from MD can start in the legs and hips, making stairs or long walks more challenging. You may also notice increased tripping, balance issues, or a wider walking gait.
Additionally, you or your loved one may tire more quickly from MD fatigue or face breathing problems that leave you short of breath, as your breathing muscles may not pull in enough air. When your diaphragm and chest muscles are weaker, tasks like talking, climbing stairs, or getting dressed can feel like a workout.
MD can also affect the heart and throat. Heart muscle weakness may lead to swelling or chest discomfort, while weakened throat muscles can make swallowing difficult. These changes can affect meals, hydration, and maintaining a healthy weight, further influencing daily life.
Managing daily symptoms and fatigue
To ease everyday strain from MD, build habits that match your or your loved one’s energy levels. Thinking of energy as a limited budget for the day can help you decide which tasks to do, which to delegate, and when to rest.
Methods to manage fatigue include:
- Take rest breaks throughout the day to help overworked muscles recover.
- Engage in gentle stretches to ease muscle tightness and keep joints mobile.
- Use a BiPAP at night to help support your lungs during sleep.
- Attend regular checkups with your MD care team to catch issues such as heart problems before they arise.
- Eat small, nutrient-rich meals to sustain energy.
Support with mobility and staying independent
Complementary therapies, assistive devices, and mobility aids can help you stay active and independent when living with MD.
Complementary therapies
A variety of therapies can support muscle strength, flexibility, and overall comfort. These approaches focus on maintaining movement, easing stiffness, and helping you perform daily tasks more easily, often complementing your regular medical care.
Physical therapy focuses on safe exercises that keep joints moving, strengthen muscles, and prevent contractures, while speech therapy aims to improve communication and swallowing.
Occupational therapy can help with everyday tasks by teaching you how to grip tools, button clothes, or eat more easily using adaptive devices like built-up handles, button hooks, or specialized cutlery.
Other therapies — including massage and aquatic therapy — can ease pain and stiffness by relaxing tight muscles and supporting gentle movement, helping you stay as comfortable and active as possible.
Assistive devices and mobility aids
In addition to therapies, various devices can help you or your loved one maintain independence and move safely:
- Mobility devices, such as walkers and wheelchairs, can provide steady support, allowing you or your child to move safely without risking falls.
- Orthotic devices can support the feet and ankles, helping to maintain proper posture and reduce pain, while also making standing or sitting more stable.
- Assistive technology, such as voice-activated smart speakers, environmental control units, adapted computer keyboards, and speech-to-text software, can make it easier to control lights, call for help, type, or work online.
Home adaptations for MD
Home changes can make it easier and safer to move around. An occupational therapist can help you figure out which home adaptations for MD will work best for your needs. They can assess how you move, what rooms you use most, and where you are most at risk for falls or overexertion.
Changes they suggest might include:
- installing grab bars near toilets and showers to prevent slips
- installing ramps to replace steps
- adding reachable shelves in kitchens
- using a shower bench to reduce the risk of falls
- adding lifts to help with transfers
Learning how to cope with change
Living with MD can bring many changes over time, not only in your body but also in your routines, relationships, and goals. Taking care of your emotional health is just as important as managing physical MD symptoms.
Counselors can help you learn to support your mental health as you face shifts in strength, independence, and future plans.
Mental health tips include:
- writing in a journal about your wins to shift focus from losses
- practicing short breathing exercises to calm worry spikes
- setting one small goal per day to build a sense of control
Connecting with local or online support groups for people living with MD can provide shared advice on equipment, health benefits, and requesting accommodations for working with MD or attending school.
Planning for the future and long-term care
After an MD diagnosis, thinking ahead can help you feel more prepared as your needs — or the needs of your loved one — change over time.
Regular check-ins with your care team allow you to track muscle strength, monitor breathing and heart health, and adjust your MD treatments to slow disease progression while supporting daily function.
Planning for the future can also help ensure that your care preferences are respected. A long-term care plan can include medical treatments, assistive equipment, and support services, as well as legal arrangements, such as designating who can make decisions on your behalf if you are unable to do so.
Future planning should also consider the well-being of caregivers. Respite care can give loved ones a break (or you, if you’re caring for someone with MD), helping them return refreshed and better able to support your needs.
By thinking ahead and putting support systems in place, you can protect your independence, preserve relationships, and navigate the changes of living with MD with greater confidence.
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.
