Living with motor neurone disease: aspects of care for people with MND, their family and friends
48 page A4 book providing an overview of motor neurone disease and strategies for symptom management.
- View free online Living with motor neurone disease: aspects of care for people with MND, their family and friends
- Hardcopy available - free for members in NSW, ACT and NT; small fee for others.
Topics covered
What is motor neurone disease?
- Neurones
- First signs and symptoms
- Classification into types
- Effect of MND
- How do people get MND?
- Incidence and prevalence
- MND progression
- Living with MND
Wellbeing and support needs
- Information needs
- Psychological and spiritual needs
- Planning needs
- Daily living and mobility needs
- Personal care, home care and respite care needs
- Financial needs
Multidisciplinary care and MND
- Regular medical review
- Living better for longer
- Multidisciplinary care
Breathing
- Signs and symptoms of respiratory muscle weakness
- Approach to management
- Strategies for managing respiratory muscle weakness and sensations of breathlessness
Swallowing and nutrition
- Muscle weakness and swallowing
- Swallowing difficulties in MND
- Approach to management
- Strategies for managing swallowing difficulties
Saliva and mouth care
- Mouth care, teeth care and MND
- Drooling saliva
- Thick saliva
- Dry mouth
Communication
- Signs and symptoms of weakness in the muscles involved in communication
- Approach to management
- Getting communication aids and devices
Movement and joints
- Neck, upper limb and lower limb muscle weakness
- Approach to management
- Strategies for managing neck, upper and lower limb muscle weakness
- Getting aids and equipment
Fatigue and insomnia
- Reasons for fatigue
- Strategies for managing fatigue
- Reasons for insomnia
- Strategies for managing insomnia
Bladder and bowel
- Bladder and bowel difficulties in MND
- Approach to management
- General toileting tips
- Bladder management
- Bowel management
Cognition
- What do changes in cognition and behaviour look like?
- Strategies for managing cognitive and behavioural change
Emotional lability
- Emotional lability and MND
- Effects of emotional lability
- Strategies for emotional lability
Care in the later stages of MND
- Palliative care
- Fears and questions about death
- The end phase
Publication update
MND NSW is currently in the process of updating this publication to include the following information about Voluntary Assisted Dying (VAD) which has been adapted from the MND Australia Planning Ahead Fact Sheet, updated July 2024
Voluntary Assisted Dying (VAD) is one choice available to eligible people at end of life. A person may access palliative care and VAD at the same time.
With VAD, a person in the late stages of advanced disease chooses to end their life with medical assistance. VAD is currently legally available in New South Wales, Queensland, South Australia, Tasmania, Victoria and Western Australia, with strict eligibility criteria. This means people with MND may have access to VAD, should they wish to pursue it.
The eligibility criteria and process for VAD differs slightly from state to state. If you are thinking about VAD, or would like more information, ask your doctor or healthcare team about it. In some states, doctors or healthcare providers may not be legally allowed to start a conversation about VAD, so you may need to raise the topic.