Breathing can become difficult with motor neurone disease (MND) as the muscles involved in breathing weaken, but the right support can make breathing easier.
Different kinds of equipment, breathing exercises, assisted coughing techniques and other strategies 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.
Working with your doctor or other health professionals is key to figuring how you can best deal with breathing problems as MND progresses.
Below you will find information on breathing basics, how MND affects breathing, what options you have to make breathing easier, and where else to go for information and support.
Two main types of voluntary muscles are involved in normal breathing:
Both sets of muscles are called respiratory muscles. When you contract respiratory muscles, they lift and expand your rib cage, pulling air into your lungs. Relaxing the muscles expels air from your lungs. This process provides the opportunity for your lungs to take the oxygen from the air that your body needs for survival and breathe out an unwanted gas called carbon dioxide that is produced by the body.
The blood carries oxygen from your lungs to cells throughout the body, where it plays an important role in how your body works.
MND causes the muscles you have control over to weaken and this includes the muscles involved in breathing – the respiratory muscles. More commonly respiratory muscle weakness develops gradually, but can occur suddenly and may even be the first sign of motor neurone disease for some people.
Breathing muscle weakness causes the breaths you take 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.
People with breathing muscle weakness generally find it easier to breathe when they are:
Generally, sitting or standing is much better than lying flat. Standing or sitting helps the downwards movement of the diaphragm necessary for a full breath.
If your diaphragm is weak, it may not be able to help you breathe effectively when you are asleep. Not breathing well during sleep can result in frequent waking during the night. Difficulty sleeping during the night can make it much harder to get the rest you need to live well with MND.
Signs that may point to breathing muscle weakness may include physical problems like:
Did you know that stomach muscles help respiratory muscles with coughing?
A cough is a very important function and can be thought of as 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 developing strategies to assist with coughing is also important.
A physiotherapist can help support you with this by teaching you techniques that assist your ability to cough by using breath stacking and/or manual assisted cough techniques.
To learn on the MND Association of England, Wales and Northern Ireland's Breathing and Ventilation factsheet.
It is important for you to discuss any breathing issues with your physiotherapist or your specialist respiratory nurse or doctor to get specific advice and instruction to determine what is best for you.
While strategies and treatments to help breathing can reduce respiratory symptoms, they do not prevent progressive weakening of the respiratory muscles in a person with MND. Being proactive when it comes to managing your breathing can make a big difference to improving your quality of life.
Having a respiratory assessment is good place to start for dealing with breathing problems. To manage your breathing effectively, 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 suspect that your breathing muscles are getting weaker talk to your doctor as there are useful strategies and treatments that can have an enormous impact on your comfort day-by-day. For example, finding ways to manage your breathing overnight can be one of the most important things you do for getting 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 this reduces pooled air in the lungs. Talk with your physiotherapist, palliative care team, specialist respiratory nurse and respiratory physician. They can advise you about the right breathing exercises for you.
Increasingly, many people with MND are choosing 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, connected to a small pump (bi-pap machine) that creates just the right amount of pressure to keep your airways open so that room air can easily come in and out of your lungs when you breathe.
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.
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, but 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 so supplementary oxygen should only be used under the supervision of health professionals.