Living with Duchenne muscular dystrophy (DMD) requires navigating a progressive loss of mobility. The weakening of muscles impacts a patient’s autonomy, as their safety and ease of movement are affected. Public environments require more vigilance, but changes can be made to the home environment to give a certain freedom in moving around. This is empowering and boosts feelings of independence.
What is DMD?
Duchenne muscular dystrophy (DMD) is a progressive genetic disorder that affects children, primarily boys. It is the result of a mutation in the DMD gene, which affects the production of dystrophin, a protein key for building muscle function and strength. There is no cure, and average life expectancy is around 22 years. Slowing disease progression, managing symptoms and maintaining quality of life are therefore the main treatment focus.
Symptoms that affect mobility in DMD
People living with DMD are usually diagnosed between the ages of 2 and 5 years old. As they grow and symptoms progress, muscles become weakened and mobility is reduced.
Common mobility symptoms include:
- Difficulty walking
- Fatigue
- Trouble going up stairs
- Difficulty getting up from a sitting or lying position
- Difficulty running or jumping
- Frequent falls
- Muscle pain and stiffness
- A waddling gait
- Bigger calf muscles than normal
- Walking on tiptoe
- Delayed growth
The heart and lungs also become impacted as the cardiac and respiratory muscles are weakened. Symptoms may include shortness of breath, headaches, brain fog and difficulty concentrating. Other complications include respiratory infections and pneumonia.
Read more about the prognosis of DMD
Adapting your home environment for a DMD patient
In people with DMD, the body’s muscles progressively atrophy, leading to severe muscle weakness. Assistive devices such as walking frames and wheelchairs are eventually required; most patients with DMD lose the ability to walk by age 12.
There are changes both big and small that can help make your home more accessible and comfortable for your loved one to move around in.
In the bedroom:
- A motorized hospital-style bed that can be adjusted to ease sitting up, lying down and getting out of the bed.
- A transfer board, sling or hoist to help in moving between the bed and a wheelchair.
- Closets that open automatically and have lower shelves or racks.
In the bathroom:
- Spacious, walk-in showers with rails and room for a shower seat, as well as non-slip floors.
- Easily accessible faucets with large handles or automatic function.
- Side rails, arm rests and a raised toilet seat.
In the living spaces:
- Ramps with rails to facilitate safety and comfort when moving around the home.
- Voice-activated lights, TV, music, smartphones, air conditioning and heating.
- Wide doors with large handles or automatic door openers.
- An open floor plan that is easy to navigate.
- A stairlift, if you have stairs.
- Clear floors free of throw rugs or other clutter that might catch on a walking frame or wheelchair.
- Hardwood floors where possible.
Making adjustments to your home environment will create a safe and welcoming space for your loved one with DMD.
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