Breathing and ventilation
Breathing can be affected by MND, but there is a lot of support available. Select from the following to find out more.
“Ask your professionals to explain things…my own experience has shown that you are often not prepared early enough.” Person with MND
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.
See information sheet 8A – Support for breathing problems to find out what can be done to help.
A respiratory consultant can assess your breathing and provide guidance. This may include information about exercises, physiotherapy, positioning and coughing techniques. They also advise on mechanical breathing support, known as ventilation.
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. For details, select Planning ahead in our information for people with or affected by MND.
With ventilation for MND, a small machine helps increase the flow of natural air into your lungs. See information sheet 8B – Ventilation for motor neurone disease for more detail.
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.
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.
Tracheostomy ventilation, where a machine supports your breathing through a tube inserted into the windpipe through the neck. Depending on your needs, this type of ventilation may require ongoing 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 reach a point where you depend on ventilation to breathe (known as becoming reliant) there is a risk to your life if you stop using it. Support can be given by respiratory and palliative care specialists during withdrawal, which may include medication to relieve breathlessness and anxiety.
Find out more about ventilation withdrawal in information sheet 8C - Withdrawal of ventilation or see End of life: a guide for people with motor neurone disease. Please note both resources include detailed content about end of life decisions, death and dying.
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.
When ready, you may find our other resources on planning ahead helpful, see our information for people with or affected by MND.