Welcome to this month’s insights from the MND NSW Info Line! We have rounded up the top 5 questions we’ve been asked lately from people living with MND, their families, and health professionals. From supporting young people to modifying food and drink so it is easier to swallow, these are the answers you have been looking for.
Question 1: What supports are available for young people who has an adult in their life with MND?
Each young person’s needs will be different but there are some services available to support young people to manage the emotional and psychological impact of supporting a family member living with MND. It is important that young people are provided with information about MND and access age-appropriate services tailored towards their needs.
- The National MND Youth Hub has information and resources for young people to help them understand MND
- Kids Helpline is a telephone and online counselling service and is available 24/7
- Reachout gives practical support, tools and tips to help young people deal with everyday issues and tough times
- Carer Gateway can offer a range of support for young carers
- The Young Carers Network is a nationally coordinated resource to raise young carer awareness, provide information, and pathways for support
- The National Centre for Childhood Grief is an Australian not-for-profit organisation dedicated to caring for bereaved children and their families following the death of a parent, sibling or other close loved one.
Learn more:
Question 2: How do I decide if Non-Invasive Ventilation (NIV) is right for me?
Non-Invasive Ventilation (NIV) is a commonly used to help people living with MND as breathing muscles weaken. It is a machine that creates right amount of pressure to help air move easily in and out of your lungs. NIV has been shown to help to prolong and improve quality of life.
Things to consider:
- Obtain a referral for a respiratory physician for a breathing assessment and to assess if NIV is suitable for you
- Decision tools can support you to make informed choices
- Costs and availability of NIV equipment may vary
- Discuss your thoughts, feelings, and preferences about respiratory management with your family, carers, and multidisciplinary care team.
Learn more:
- Breathing & MND Factsheet: Medications & NIV | MND Australia
- Decision tool: MND Patient Decision Support
- Video about NIV and MND: Non Invasive Ventilation and MND
Question 3: What is the Day of Hope and Remembrance?
The Day of Hope and Remembrance is an important event for the MND community. It is time to join in strength and solidarity for those living with MND as well as remember those we have lost to the disease. Importantly, it is a time to share in hope for a future without MND. Hear stories of courage, resilience and hope during the candle lighting ceremony
By attending the event, you will:
- Dedicate a blue cornflower to person living with MND or in remembrance
- Hear from our keynote speaker
- Take a moment to reflect as you walk through the March of Faces display.
For more information and how to register:
Question 4: How do I adjust food and drink consistency to make it easier to swallow?
MND can cause weakness to the muscles in the mouth, tongue and throat. As a result, some people living with MND experience difficulty with eating, drinking, and swallowing. It is important to adjust food and drink to make it easier to swallow. This also helps to improve nutrition, stay hydrated, and maintain weight.
Top tips for adjusting food and drink consistency:
- Try fluids that are naturally thicker such as fruit nectars, tomato juice, or milkshakes
- Puree or blend foods
- Use commercially available thickeners
- Avoid foods that are crunchy, chewy, powdery, flaky, or sticky.
If you are experiencing changes, it is important to speak with your multidisciplinary care team. This may include a speech pathologist, dietician, or occupational therapist.
Learn more:
- Eating, Drinking & Swallowing with MND
- Eating and drinking with motor neurone disease (MND) – Eating & Drinking Guide
- Swallowing, eating and drinking, MND Association UK.
- Adjusting to swallowing changes and nutritional management in ALS, ALS Association USA.
Question 5: Can I access the National Disability Insurance Scheme (NDIS) with MND and how quickly should I apply?
The NDIS provide funding for disability related supports directly to the individual.
If you are under the age of 65 and living with MND, you may be eligible for the NDIS. You will need to make an access request before turning 65. It is recommended to apply quickly in order to get supports in place as soon as possible. Your MND Advisor can help to access the NDIS and provide information about the NDIS priority access pathway for people with MND.
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
