Living with motor neurone disease: day-to-day for people with MND, their family and friends
72 page A4 book providing strategies for living at home with MND, more in-depth information and day-to-day tips.
- View free online Living with motor neurone disease: day-to-day for people with MND, their family and friends
- Hardcopy available - free for members in NSW, ACT and NT; small fee for others.
Topics covered
Getting information about MND
- Using the Internet as a health information source
Feelings and attitudes, and those of family and friends
- Feelings and attitudes
- Communicating about emotional issues
- Talking with young people about MND
- Friends
- Linking up with others
Planning ahead
- Possible planning steps
- Preparing a Will (NSW)
- Making a Power of Attorney (NSW)
- Appointing an Enduring Guardian (NSW)
- What is legal capacity? (NSW)
- What is Advance Care Planning and an Advance Care Directive?
Around the home
- How can an occupational therapist help?
- Getting in and out of your home
- Inside your home
- Slips, trips and falls
- Safe use of a wheelchair
Getting comfortable
- How can a physiotherapist help?
- Temperature control
- Managing swollen ankles, feet and hands
- Preventing pressure sores
- Moving yourself from one position or place to another
- How someone can help you move from one position or place to another
- Tips for a comfortable hospital, respite or residential care stay
Everyday personal care
- If someone is helping you with your personal care
- Showering
- Eye, nose and ear care
- Hair care
- Mouth and teeth care
- Skin care
- Nails
- Shaving
- Toileting
- Menstruation
- Clothing and dressing
Eating well
- Getting advice from a dietitian, speech pathologist and occupational therapist
- Timing of meals and drinks
- Liquids
- To help prevent weight loss or to regain weight
- Preparation and presentation
- Commercially available products for boosting energy intake
- When someone is assisting you to eat or drink
- Recommendations from health professionals for food consistency
Communication
- Communication and MND
- Regular review of communication needs
- Communication tips
- Strategies often suggested
- Call devices
- Care alerters
- Environmental control units
Living independently at home
- MND and health and community care services
- Getting your needs and issues dealt with
- Getting through the ‘paperwork' and understanding services
- Making appointments and amalgamating service visits
- Getting your issues dealt with
- When your extended family, friends or neighbours want to help
- Keeping track of services, contacts and day-to-day care
Leisure
- Getting around
- Holidays and travelling longer distances
- Some ideas for maintaining interests and hobbies
- Staying connected
The later stage of MND
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.