Daily Care at Home: Rehab, Wheelchairs, Breathing and Heart Checks
The short answer: while there is still no cure, good standard care is a treatment in itself. The international DMD care consensus published in The Lancet Neurology in 2018, together with…
What parents ask most “How do we do the stretching at home each day? Can he swim? Are trampolines and running races completely off limits?” “He can still walk. Should we get a wheelchair early? When do we move to a powered one?” “Does his heart need checking from diagnosis? At what age do lung function tests start? He snores and wakes up with headaches — is that his breathing?” “If we end up in emergency care with a cold, a cough or a fracture, what do we have to tell the doctor?”
The short answer: while there is still no cure, good standard care is a treatment in itself. The international DMD care consensus published in The Lancet Neurology in 2018, together with long-term steroids and joined-up management, has pushed the median age of losing walking from 10 to over 13, and life expectancy to 30–40. Those extra 10–20 years come from the small, tedious things in this article. China published its own multidisciplinary management guideline for DMD in 2025. For how often to have check-ups, follow the Chinese guideline and your own doctor's plan.
Every day, every week: rehabilitation
Stretching is daily homework. Focus on the ankles, knees, hips and upper limbs. The aim is to prevent contractures. Physiotherapy should start at diagnosis, with a therapist teaching you how to do it at home — not when the child can no longer walk.
The rule for exercise is “enough, not heroic.” Low-impact activities such as swimming and gentle cycling are usually welcome. Activities that force muscles to work too hard — especially eccentric exercise, where the muscle lengthens under load, such as trampolining, sprinting, running downhill or heavy resistance work — should be avoided. DMD muscle cannot take that kind of tearing. Pushing hard does damage, not good.
Night ankle-foot orthoses (AFOs) and standing frames have their place. Children often resist them. Start with short periods and build up slowly. Do not give up for good after one argument, and do not force them so hard that you cause a new injury.
A wheelchair is not “giving up” — it keeps him going
Many parents dread the wheelchair decision, as if sitting in one meant abandoning walking. The order is actually the other way round. Get the chair while he can still walk, and use it for long distances, for days when you are short of time, and for when he is tired. The energy saved is exactly what protects his ability to walk short distances. Seating and support need a professional assessment: sitting crooked speeds up curvature of the spine. When to move from manual to powered depends on upper-limb strength and how far he needs to travel day to day. Assess early, apply early — do not leave it until the week before term starts.
Heart and breathing: check on schedule, even with no symptoms
Heart: PPMD advises review every year from diagnosis, with tests such as an ECG and echocardiogram. Heart muscle damage usually causes no feeling at all in the early stages. By the time a child says he is tired or breathless, it is often no longer mild. When to start heart-protecting medication is a cardiology decision. Do not wait for symptoms before you ask.
Breathing: the lung team also advises yearly review. Snoring, headaches on waking, sleepiness in the day and repeated chest infections are all signs that breathing at night may not be enough. Tell the doctor about them; do not wait to be asked. Non-invasive ventilators and cough-assist machines are now common in homes abroad. In China, home use and training are still not widespread, so if you need one, raise it with the respiratory team yourself — do not wait until one bad cold turns into pneumonia before you first hear of them.
An emergency card: make a card he carries with him. On it: the diagnosis, the steroid he takes and its dose (steroids must not be stopped suddenly), notes on anaesthesia and oxygen, and his doctor's phone number. An emergency doctor may not know DMD well. That card can speak for you at the moment it matters.
In China | Abroad
Good care is concentrated in neuromuscular centres at major hospitals, such as Peking Union in Beijing and the big centres in Shanghai. Local rehabilitation and follow-up often cannot keep up, and many families travel across provinces for review. A workable approach: agree the overall plan and review rhythm at a major centre, do daily rehabilitation as close to home as you can, and send results back — remotely, or at review visits — for checking. | In the US, UK and Europe, multidisciplinary teams are more established: neuromuscular, rehabilitation, respiratory, cardiology, orthopaedics, nutrition and psychology refer within one team. PPMD's area-by-area guidance is clear: heart checks yearly from diagnosis, lung checks yearly, physiotherapy from diagnosis.
Sources for this article
Birnkrant et al., The Lancet Neurology 2018 DMD care consensus (Action Duchenne summary page): https://www.actionduchenne.org/revised-standards-of-care-for-duchenne-muscular-dystrophy/ ; full text (PMC): https://ncbi.nlm.nih.gov/pmc/articles/PMC5902408/
PPMD care guidelines by area (heart, lung and physiotherapy frequency): https://www.parentprojectmd.org/care/care-guidelines/by-area/
Chinese University of Hong Kong / Hong Kong Neuromuscular Association, DMD fami
