“Ask your professionals to explain things…my own experience has shown that you are often not prepared early enough.” Person with MND
Breathing can be affected by MND, but there is a lot of support available. Select from the following to find out more.
How does MND affect breathing?
MND does not stop air being processed by your body, but it can weaken the muscles that help your lungs to inhale and exhale. This means that breathing problems can occur, leading to other symptoms, such as fatigue and breathlessness.
A respiratory consultant can assess your breathing and advise. This may include information about exercises, physiotherapy, positioning, coughing techniques and mechanical breathing support, known as ventilation.
Why is it risky to have extra oxygen with MND?
Extra oxygen is not usually recommended with MND, as it can upset the balance in your body between oxygen and carbon dioxide. Too much carbon dioxide can be harmful.
However, oxygen may sometimes be used with caution where your levels are low.
As MND is a rare condition, and not all health professionals may be aware of the risk involved in using extra oxygen. We provide various ways to alert professionals to your needs, including an MND alert wristband that carries an oxygen warning. See the planning ahead section on our Information for people with or affected by MNDpage for details.
This support can ease breathing problems, such as breathlessness and fatigue. See also information sheet 11D – Managing fatigue.
While ventilation can improve quality of life, it cannot reverse the progress of the disease, as muscles continue to weaken. Over time, weakening of breathing muscles means you are likely to become reliant on ventilation (where you need to use it all the time). Other symptoms also progress with MND, which can raise questions about future care.
Having open discussions with a respiratory consultant or team can be helpful when making a decision about breathing support and ventilation. Being informed helps you to think ahead and make timely decisions that feel right for you.
Are there different types of ventilation?
There are two types of ventilation that can assist with breathing:
Non-invasive ventilation (NIV), where a portable machine supports your own breathing by providing extra air flow through a nose or face mask. This type of ventilation is more commonly used with MND.
Invasive ventilation (tracheostomy), where a machine takes over your breathing through a tube inserted into the windpipe through the neck. This type of ventilation can require more intensive clinical support.
For additional information, see the following information sheets:
Yes. It is your right to withdraw or refuse treatment, even if it is considered to be life-sustaining.
If you have become reliant, there is a risk to your life if you stop using ventilation. Support can be given by respiratory and palliative care specialists during withdrawal, which may include medication to relieve breathlessness and anxiety.
You can record your wishes about future care, in case you become unable to make decisions or communicate for any reason. For guidance on planning ahead, see the following information sheet 14A – Advance Decision to Refuse Treatment.