Get informed > Information resources

Information resources

Our practical, up-to-date information resources explain motor neurone disease (MND) and empower people impacted by the disease to make decisions to help them live better for longer.

Prefer paper? Contact your state MND association if you would like paper copies of any of the following brochures.

tags:

Facts about MND

The following information resources are a good starting point:

More facts about MND (210 kB)

MND background information sheet (500 kB)

Some facts about MND (287 kB)

Living better for longer

Find answers to care issues in our series of facts sheets exploring interventions that research has shown to help people live better for longer with MND:

Living with MND during the COVID-19 pandemic (782 kB)

MND evidence-based interventions – an overview (EB1) :A summary of the "Living better for longer" series of fact sheets (2 pages) (256 kB)

Multidisciplinary care (EB2) (791 kB)

Multidisciplinary care team (EB3) (617 kB)

Riluzole (EB4) (245 kB)

Breathing and motor neurone disease: an introduction (EB5) (871 kB)

Breathing and motor neurone disease: what you can do (EB6) :Tips to help you manage respiratory symptoms and stay more comfortable (2 pages) (255 kB)

Breathing and motor neurone disease: medication and non-invasive ventilation (EB7) :An overview of using non-invasive ventilation and medications to manage breathlessness (2 pages) (250 kB)

Considering gastrostomy – PEG and RIG (EB8) :Information about gastrostomy as a way to improve nutrition (2 pages) (318 kB)

Talking with your GP or neurologist about MND and mental health (600 kB)

For healthcare professionals and service providers

The following resources provide proven, evidence-based information to help Australian health and community care professionals promote optimal care outcomes for people living with MND:

MNDcare: The MND Australia website for health and community care professionals involved in MND care and support.

MND Aware training modules: A self-paced, e-learning program developed by MND NSW, which provides health and community care profesessionals with a basic understanding of MND and the impact of MND on an individual's life.

Aspects of care for the primary health care team 2017 : A detailed clinical guide for GPs and the primary healthcare team who are supporting people living with MND and their families. Printed copies are available from your State MND Association. (40 pages) (1.2 MB)

Aspects of care for staff of residential aged care facilities: A booklet produced by MND NSW for residential aged care staff, which will assist them to meet the needs of residents living with MND (74 pages) (1.973 MB)

Aspects of care: community care: A booklet produced by MND NSW for community care providers and case managers, which provided information on providing MND care in a community setting (78 pages) (2.1 MB)

For families and young people

This extensive information pack will help parents to talk about MND with their children. The series includes booklets for:

Parents :This document outlines how to keep communication with children strong (20 pages) (317 kB)

8-12 year olds :(8 pages) (217 kB)

Teenagers :(20 pages) (318 kB)

Young friends :(8 pages) (180 kB)

Schools :(12 pages) (241 kB)

Familial MND

Familial MND and genetic testing (243 kB)

Cognitive and behaviour change

Cognitive and behaviour change in MND (168 kB)

Planning ahead

Planning ahead (658 kB)

Kennedy's Disease

Kennedy’s Disease is rare and often mistaken for motor neurone disease (MND). The Kennedy's Disease fact sheet can help you learn more about its causes and symptoms, ways it can be managed, differences with MND, who it affects, and sources of support:

Kennedy-s-Disease (249 kB)