External Resources

A simple summary of research into the use of NIV to support breathing in MND/ALS. Developed for myBreathing by the University of Sheffield.

This detailed but simple guide will take you through the topics and issues raised on myBreathing, and will help you to reflect on the various options.

Detailed information on non-invasive and invasive ventilation. Discusses the option of stopping ventilation and what to consider around this.

What you need to know about flying with respiratory changes due to MND. Find out what you need to ask your care team before travel.

General tips to help you plan for journeys via different types of transport, and if you are planning a holiday. Covers breathing and ventilation.

Addresses questions and concerns you might have about sex and intimacy when living with MND, whether or not you are in a relationship.

Addresses questions and concerns you might about sex and intimacy when your partner has MND.

Guidelines from the National Institute of Health and Care Excellence (NICE) outlining the standard care anyone living with MND/ALS should receive in the UK. Has a section on breathing and ventilation.

Information to support decision making around ventilation towards end of life. People can choose to stop (or withdraw) from ventilation with support from their care team.

A detailed guide about end of life with MND/ALS, covering all aspects of care and decision making. Includes information about breathing support.

Resources aimed at supporting children’s information needs around MND/ALS, with guidance for parents and grandparents.

A detailed guide to planning ahead for care choices towards the end of life with MND/ALS. Contains template forms.

A webpage of resources and videos around end of life. This is general information covering a range of conditions.

Support about grief and emotions. For family and loved ones before, around and after end of life.