Welcome to this month’s insights from the MND NSW Info Line! We have rounded up the top five questions we’ve been asked lately from across NSW, ACT and NT. From managing fatigue to symptoms of behavioural change, this is the place to find helpful information and practical tips.
Question 1: Does FlexEquip provide customised (individualised) assistive technology?
FlexEquip is a service of MND NSW providing fast access to equipment and assistive technology. It is not possible for FlexEquip to provide custom-made assistive technology. People who would like specific custom-made items may need to explore other options such as:
- Purchase their own equipment
- Apply for equipment through EnableNSW, the NSW Government Equipment Service, or the ACT Government Equipment Service.
Learn more:
- FlexEquip: Frequently asked questions
- Home - EnableNSW
- ACT Equipment Loan Service (ELS) - Canberra Health Services
Question 2: What is the difference between MND NSW, MND Australia, and Fight MND?
MND NSW is the only organisation that provides support and equipment directly to people who are living with MND in NSW, ACT, and NT. MND NSW is a not-for-profit organisation that provides support, information, and education to people living with MND, their families, and carers.
Fight MND does not provide direct support to people living with MND. Fight MND raises funds for research and grants.
MND Australia does not provide direct support to people living with MND. MND Australia is the Peak Body for the MND State Associations and provides information about MND, as well as investing in research and policy.
Learn more:
- MND NSW: What We Do
- MND Australia: About Us
- About FightMND - FightMND
Question 3: I am a person living with MND, how do I manage fatigue?
Fatigue is a commonly reported symptom from people living with MND. It can be caused by a number of reasons including weakened breathing muscles, low nutrition, side effects of medications, and insomnia. Fatigue can often negatively affect a person's quality of life.
Top tips to manage fatigue:
- Plan activities to maximise times of greatest energy
- Rest in-between activities
- Listen to your body and try not to push yourself
- Maintain nutrition
- Use aids and equipment for activities that are particularly tiring
- Maintain good sleep hygiene.
Speak to your multidisciplinary care team to help you manage fatigue. This may include a respiratory specialist, dietitian, speech pathologist, nurse, or physiotherapist.
Learn more:
- Daily life with Motor Neurone Disease | Living with MND
- MND Aware Living with MND - Aspects of care - Page 36-37
Question 4: I know that MND can cause changes in behaviour, what should I look out for?
For approximately 50% of people living with MND, there may be changes in cognition and behaviour. Some signs and symptoms of behavioural change may include:
- Behaving inappropriately for the situation or difficulty controlling behaviour
- Becoming more impulsive
- Becoming more withdrawn
- Less interest in hobbies
- Reduced motivation
- Showing less affection and consideration for others.
Changes in behaviour may also be symptoms of other conditions or side effects from medications. Therefore, it is important to consult your healthcare team for opinion and management.
Learn more:
- Jason’s Story: Behavioural Change and MND
- MND Factsheet: Cognitive & Behaviour Change | MND Australia
- Cognition, Thinking & Behaviour in MND | MND Australia
Question 5: I am experiencing dry mouth, how can I manage this?
Some people living with MND experience dry mouth. This can be caused by a variety of reasons including side effects of medications, dehydration, breathing through the mouth during sleep, and poor lip seal. This may also lead to difficultly in eating, speaking, or clearing the throat.
Top tips to manage dry mouth:
- Review medications
- Sip fluids frequently
- Use commercially available products to moisten the mouth such as gels and sprays.
Speak to your multidisciplinary care team to help you manage dry mouth. This may include a dietitian, speech pathologist, neurologist, or physiotherapist.
Learn more:
Do you have a question about MND?
Whether you’re newly diagnosed, caring for a loved one, or navigating the MND space as a health professional, we’re here to help.
Call us on 1800 777 175
Or submit and online inquiry at Contact MND NSW
“We can't do this alone. But together, we're unstoppable.”
-MND Community Member
