Breathing and MND
Motor neurone disease causes the muscles you have control over to weaken. This can include the muscles involved in breathing – the respiratory muscles.
Respiratory muscle weakness causes breathing to become shallower than usual. Less air is drawn into the lungs so less oxygen is absorbed into the blood. It is also more difficult to breathe out the carbon dioxide that is produced by the body.
Getting advice about respiratory management can help you live better for longer – even if you have not noticed any changes in your breathing. This will give you more time to get information, have discussions and decide which strategies are right for you.
Requesting a baseline measurement of your breathing function soon after diagnosis provides details about your 'usual' breathing and can be helpful for future treatment.
Respiratory muscle weakness usually develops gradually, but can occur suddenly. Sometimes, respiratory muscle weakness may even be the first sign of MND.
Let your doctor or Support Advisor know if you think you have respiratory muscle weakness. Changes that may result from respiratory muscle weakness include:
- disturbed night sleep or loss of sleep
- daytime sleepiness
- morning headaches
- increased fatigue
- decreased appetite
- impaired concentration or confusion
- irritability and anxiety
- quiet voice and fewer words per breath
- shallow, faster breathing
- reduced movement of the rib cage or abdominal muscles
- excessive use of the muscles in the upper chest and neck
- breathlessness (dyspnoea) even when at rest
- breathlessness lying flat (orthopnoea)
- weakened cough and sneeze
Positioning your body, adjusting air flow in the room, staying away from coughs and colds, maintaining a healthy diet, breathing exercises, and saving your energy are just some of the simple techniques you can use to manage mild respiratory symptoms.
The way you manage your respiratory symptoms may affect how your other symptoms of MND can be managed.
Non-invasive ventilation
Increasingly, many people with MND are choosing to use non‐invasive breathing support, known as non-invasive ventilation (NIV).
NIV gives you breathing support and provides relief from symptoms such as fatigue, breathlessness and disturbed sleep patterns.
NIV involves wearing a mask connected to a small pump that creates just the right pressure to keep your airways open so that room air can easily come in and out of your lungs when you breathe. People with MND most commonly use variable positive airway pressure (VPAP) or bi‐level positive airway pressure (BIPAP) machines. This is because these types of NIV machines can provide a lower level of pressure when you breathe out. In addition, these machines can be adjusted to provide increased respiratory support if needed.
The NIV machine is usually used at night but as the respiratory muscles weaken you might use it at times during the day as well. Over time, NIV will be less effective in helping control your respiratory symptoms, because your MND will continue to progress.
While NIV is suitable for many people with MND it is not suitable for everyone. The suitability of NIV for you will not be known until you have had a respiratory assessment.
This information comes from MND Australia's evidence-based fact sheets. There is a lot more information provided in the relevant fact sheets below:
MND UK also has a useful fact sheet: