Using NIV more often
"You can use NIV more often in the day as your symptoms of breathlessness increase"
As MND/ALS progresses, it will further weaken your breathing muscles. It is likely that you may start to feel a bit breathless when not using the machine. You can increase your daytime use of NIV to manage these symptoms.
It is your choice how much you use NIV. Many people progress to using it 24 hours a day. This can be quite a change to daily life. However, NIV will continue to support your breathing and improve quality of life. For many people it also prolongs life.
Some people worry their breathing muscles may weaken faster if they increase their NIV use. Weakening of these muscles will continue at the same rate with or without NIV. This is related to MND/ALS, and not ventilation use.
You can choose not to use NIV 24 hours. For example you may choose to use it just at night still. This is understandable and people have various reasons for this.
There are medications that can help reduce the feeling of breathlessness. Medications are not as effective in managing breathlessness as NIV. People who choose not to increase their NIV use in response to their symptoms are likely to deteriorate more quickly.
Top tip: When using NIV 24 hours your care team will provide you with a spare machine. They will give you different masks to enable you to speak easier or to vary where it sits on your face.