Living with MND

Advice, tips and experiences from real people affected by Motor Neurone Disease (MND) on living with MND.

When you're living with Motor Neurone Disease (MND), it can be useful to hear from others who have gone through similar experiences.

In this section, you will find useful resources for people with MND, carers, family members and health and social care professionals. 

We have produced a suite of animated videos, featuring the voices of real people affected by MND, and accompanying written materials, to help you cope with living with some of the common symptoms and challenges which an MND diagnosis can bring.

We have worked closely with partners at NHS Lothian to determine the most useful topics to cover including; dealing with choking, guidance on avoiding trips and falls and advice on when to get a feeding tube fitted.

Trips & Falls

Did you know that the most common cause of hospital admissions for people with Motor Neurone Disease is due to simple trips and falls?

A hospital admission is never desirable in any case, but did you know that a stay in hospital could result in you losing your care package?

In this section we share the voices of real people affected by MND, with advice on preventing trips and falls inside and outside of the home, including useful tips for modifying your living with MND. Read more.

Choking

A choking episode can be extremely distressing for carers, family members and people with MND when an episode occurs. Healthcare professionals advise that people with MND won’t die because of a choking episode – but it doesn’t always feel like that when it occurs.

This video features the voices of carers and family members who share their experiences of dealing with a choking episode. This section also contains additional information on coping with choking from health and social care professionals. Find out more.

Feeding Tubes

Having a feeding tube inserted can seem like a scary thought. Fraser, from West Lothian, shares his own real life experience of getting a feeding tube inserted and why it was important for him to get his tube fitted while he was still fit and healthy.

This section also includes useful guidance for people who are recommended to have a feeding tube inserted. More information here.

 

*Thank you to NHS Lothian (in particular MND Clinical Specialists Judith Newton, Gill Stott and Alison McEleney) and the Provincial Grand Lodge of Edinburgh for working with us on this project.*

 

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