If you begin to feel breathless with MND or have trouble sleeping, breathing therapies and ventilation support are available.
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“Ask your professionals to explain things…my own experience has shown that you are often not prepared early enough.”
How does MND affect breathing?
MND does not stop air being processed by your body, but it can weaken the breathing muscles that help your lungs inhale and exhale. If you are affected by breathing problems, it can lead other symptoms, such as fatigue and breathlessness.
See information sheet 8A – Support for breathing problems to find out about the range of support on offer.
Who can assess my breathing?
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 assisted ventilation.
If your ability to cough and clear secretions has weakened, see the video on cough augmentation at the bottom of this web page. This provides guidance on a technique called breath stacking, which can help increase the air in your lungs to support a weak cough.
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. For details, select Planning ahead in our Information for people with or affected by MND.
When assisted ventilation is used to support your breathing with MND, it does not provide extra oxygen. Instead, it helps the flow of natural air into your lungs.
How does ventilation support breathing?
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 the symptoms caused by breathing problems, such as breathlessness and 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 support for breathing and ventilation. Being informed helps you to think ahead and make timely decisions that feel right for you.
When using ventilation, you may find it more comfortable to remove dentures when sleeping. This can also avoid any risk of dentures or dental plates moving.
See the myBreathing website for video content and information about assisted ventilation. The website has been developed by SITraN – the Sheffield Institute for Translational Neuroscience.
Made in collaboration with people living with MND, their videos help explore decision-making about assisted ventilation and how it is used in daily life.
Links to further reading are provided, including our related information sheets and guides.
Are there different types of ventilation?
There are two types of assisted ventilation to help with breathing:
Non-invasive ventilation (NIV)
This type of ventilation uses a machine to support the flow of natural air through a nose or face mask. This type of ventilation is more commonly used with MND.
The type of ventilation uses a machine to support your breathing through a tube inserted through the neck, into the windpipe. This type of ventilation usually requires ongoing clinical support.
For information to help with your decision-making, see the following information sheets:
Can I stop using ventilation if I wish?
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 our guide for people with MND on End of life. 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 Information for people with or affected by MND.
Page last updated: 9 November 2023
Next review: January 2025