ALS/MND weakens the muscles used for breathing and coughing. The lungs themselves are not affected, but weaker muscles move less air in and out. Over time, this makes breathing harder.
This page explains how breathing can change, what can help, and the decisions people may face about breathing support.
On this page
Breathing changes │ What can help │ Invasive ventilation │ Planning ahead │ Who can help │ Resources
How ALS/MND affects breathing
Breathing relies mainly on the diaphragm, a large muscle below the lungs, and the muscles between the ribs. When these muscles weaken, breathing becomes shallower. Less oxygen reaches the body, and carbon dioxide can build up in the blood.
Breathing problems usually develop gradually, but they can sometimes appear suddenly. They can occur at any stage of the disease. Common signs include:
- Shortness of breath, especially when lying flat or during activity
- Disturbed sleep and waking often during the night
- Headaches in the morning
- Tiredness and sleepiness during the day
- Difficulty speaking or eating for long periods
- A weak cough and difficulty clearing mucus
- Strain in the neck and shoulders, as these muscles work harder to help with breathing
Breathing should be checked regularly. A breathing test soon after diagnosis gives a baseline to compare against later. Regular tests help the care team notice changes early and offer support before problems become serious.
What can help
Non-invasive ventilation (NIV). NIV uses a small machine to push air into the lungs through a mask over the nose or mouth. Most people start by using it at night, and some later use it during the day as well. NIV can relieve symptoms, improve sleep and quality of life, and help people live longer. It does not stop the breathing muscles from weakening.
Help with coughing. Assisted cough techniques, cough assist machines, and suction can help clear mucus from the airway. This reduces the risk of chest infections.
Everyday strategies. Breathing exercises, good posture and positioning, and eating well can all support breathing. Medication can ease breathlessness and the anxiety that can make it worse.
Important: Oxygen needs medical advice
Oxygen does not usually help breathing problems caused by ALS/MND. In some people, it can be unsafe because it can cause carbon dioxide to build up. Oxygen should only be used on the advice of the care team. Carrying an alert card that explains this can help in an emergency. See the Emergency Preparedness Toolkit.
Invasive ventilation
When NIV is no longer enough, some people choose invasive ventilation. This involves a tracheostomy: a small opening made in the windpipe, through which a ventilator delivers air.
Invasive ventilation can extend life significantly, but ALS/MND continues to progress. It requires care around the clock from trained caregivers, and it has a major effect on the person and their family. It is a personal decision, and many people choose not to have it.
Planning ahead
Decisions about breathing support are easier to make before a crisis. Talk with the care team and family early about the options, including what to do if breathing becomes severely difficult. Record these wishes in an advance care plan, and review them as needs change.
Who can help
A multidisciplinary care team supports breathing and respiratory care. The team can include:
- Respiratory physician (pulmonologist): assesses breathing and prescribes ventilation
- Respiratory therapist: sets up and adjusts breathing equipment, and teaches cough techniques
- Neurologist and family doctor: coordinate overall care
- Physiotherapist: teaches breathing exercises and helps with clearing the chest
- Speech-language pathologist: helps manage swallowing and speech changes linked to breathing
- Occupational therapist: recommends positioning and equipment
- Dietitian: helps maintain the nutrition that breathing muscles need
- Social worker and psychologist: support decision-making and emotional wellbeing
- Palliative care team: helps manage breathlessness and plan for the future
For help with thick saliva and mucus, see Nutrition, Swallowing and Saliva.
Videos about breathing and respiratory care
Watch videos about breathing changes, respiratory care, and breathing support for people living with ALS/MND.
Resources from our members
Explore additional resources about breathing, respiratory care, ventilation, and decision-making developed by Alliance member associations.
Understanding breathing changes
Breathing and MND
MND Australia · English
An overview of how MND affects breathing, the options that can make breathing easier, and where to find further support.
Support for Breathing Problems
MND Association · English and other languages
Information about how MND may affect breathing, who can help, and the therapies and treatments available to manage symptoms.
Addressing Respiratory Changes in ALS
The ALS Association · English
Information about what to expect as breathing changes, how breathing is managed, and the professionals involved in respiratory care. The page also includes videos from health professionals.
Breathing and MND: What You Can Do
MND Australia · English
Practical strategies to support breathing, including non-invasive ventilation, breathing exercises, positioning, and nutrition.
Dealing with Breathing Issues
The ALS Association · English
A short introduction to breathing and coughing techniques, and equipment that supports coughing and breathing.
ALS and Breathing
Les Turner ALS Foundation · English
A guide covering symptoms of breathing muscle weakness, breathing tests, oxygen, mucus and saliva, and options for non-invasive and invasive ventilation.
Ventilation and decision-making
Ventilation: Options and Decision Making in ALS
ALS Canada · English and French
A comparison of non-invasive and invasive ventilation, including the advantages and challenges of each. The fact sheet also explains the importance of making decisions early and recording them in an advance directive.
Non-Invasive Ventilation: Information Booklet
ARSLA · French
Information about why non-invasive ventilation may be needed, how it works, and who sets it up and supervises it.
Breathing and Ventilation
MND Australia · English
Information about how non-invasive ventilation is used, medications that can ease breathlessness, and why oxygen should be used with caution.
Breathing and Ventilation
MND Association · English
Information about how breathing may be affected, when a ventilator may be needed, how ventilation works, and what happens if a person decides to withdraw from ventilation.
myBreathing
Sheffield Institute for Translational Neuroscience · English
Short videos to help people explore decisions about assisted ventilation and how it is used in daily life, including experiences shared by people living with ALS/MND.