Breathing can get harder with motor neurone disease (MND). This is because the muscles used for breathing weaken. The right support can make breathing easier.
Equipment, breathing exercises, assisted coughing tips and other tools can help to make a real and positive difference.
Research has confirmed that using non-invasive ventilation (NIV) can increase survival time, in some cases by up to 13 months.
Your healthcare team will help you work out how to best deal with breathing problems as MND progresses.
Below you will find information on the following:
Two main types of muscles are involved in normal breathing:
Both sets of muscles are called respiratory or breathing muscles.
When you contract breathing muscles, they lift and expand your rib cage. This pulls air into your lungs. Relaxing the muscles releases air from your lungs. This process allows your lungs to take the oxygen from the air your body needs to survive. It also removes an unwanted gas called carbon dioxide that is produced by the body.
Oxygen is carried through the blood to the body’s cells, and plays a key role in how your body works.
MND causes the muscles you have control over to weaken. This includes the muscles involved in breathing – the respiratory muscles.
Weakness in the breathing muscles usually develops gradually. However, it can occur suddenly. For some people, it is the first sign of motor neurone disease.
When the breathing muscles are weak, the breaths you take are 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.
People with breathing muscle weakness generally find it easier to breathe when they are sitting or standing.
Generally, sitting or standing is much better than lying flat. Standing or sitting helps the downwards movement of the diaphragm needed to take a full breath.
If your diaphragm is weak, it can affect your breathing when you are asleep. Not breathing well during sleep can mean you wake up a lot during the night. Trouble sleeping at night can make it much harder to get the rest you need.
Signs that you have breathing muscle weakness may include physical problems like:
Did you know that stomach muscles help breathing muscles with coughing?
A cough is an important function. A cough is a powerful breath out that helps keep your airways clear.
When you cough your stomach muscles contract and push stomach contents up against your diaphragm. This causes your diaphragm to move up and quickly force air out of your lungs. As the stomach muscles get weaker finding ways to help with coughing is also important.
A physiotherapist can help support you. They can give you tips to help you to cough. They can show you breath stacking and/or manual assisted cough techniques.
It is important for you to discuss any breathing issues with your healthcare team. They can give you specific advice and instruction on what is best for you.
Tips and treatments can reduce respiratory symptoms, but they do not stop the respiratory muscles from getting weaker. However, you can improve your quality of life by asking for help to manage your breathing.
Having a respiratory assessment is good place to start for dealing with breathing problems.
Speak with your doctor soon after your diagnosis to talk about having a baseline (or initial) assessment of your respiratory muscle function. An assessment will help guide your ongoing breathing management.
If you think that your breathing muscles are getting weaker talk to your doctor. There are useful tips and treatments that can have a big impact on your comfort day-by-day. For example, finding ways to manage your breathing at night can help you get a good night’s sleep.
Breathing exercises may slow the progression of respiratory muscle weakness. They also help your lungs to expand more fully and reduces pooled air in the lungs.
Talk with your physiotherapist, palliative care team, specialist respiratory nurse or respiratory physician. They can advise you about the right breathing exercises for you.
Many people with MND choose to use non‐invasive breathing support, also known as non‐invasive ventilation (NIV) or bi-PAP.
NIV involves wearing a mask over the nose, and/or mouth and nose. The mask is connected to a small pump (bi-pap machine).
The machine creates just the right amount of pressure to keep your airways open. This allows room air to easily come in and out of your lungs when you breathe.
The NIV machine is usually used at night. As the breathing muscles weaken, you might use it during the day as well.
You may find the MND Decision Support Tool: Should I have assisted ventilation to help breathing difficulty in MND? a useful resource.
Oxygen does not usually help respiratory problems caused by MND. It is sometimes prescribed if you have an underlying lung problem unrelated to MND.
High levels of oxygen in the blood can affect the natural drive to breathe. Extra oxygen should only be used under the supervision of health professionals.