Each month the MND InfoLine receives a wide range of enquiries from people living with MND, their families, and health professionals. We have rounded up the top 5 questions we’ve been asked lately. From managing insomnia to multidisciplinary care, these are the answers you have been looking for.
Question 1: How can I reduce the risk of falls within the home?
People living with MND may have a greater risk of trips and falls. It may also be difficult to get up off the ground after a fall. This is due to muscle weakness which can affect balance, posture, mobility, and coordination of movement.
Top tips to reduce falls:
- Remove clutter, cords and obstructions from walkways
- Use as self-assessment tool (like the ones below)
- Ensure your home is well-lit and use night lights
- Avoid storing items in low cupboards that requires bending
- Get equipment to help with transfers, non-slip mats, and install handrails
- Wear supportive footwear rather than socks or slippers.
Speak to your multidisciplinary care team to help you manage falls. This may include an occupational therapist or physiotherapist.
Learn more:
- Staying active and on your feet » NSW Health - Active and Healthy
- Stop falls at home | Home FAST fall risk assessment tool | healthy ageing
- FlexEquip Equipment is available to people living with MND: Transfer aids
Question 2: What is the process of returning equipment to FlexEquip?
If you no longer require equipment provided by FlexEquip, it is important to return it so other people living with MND can access it.
Step 1: The person living with MND, their carer, or their health professional can call or write an email to FlexEquip with a description of the equipment, where it is located, and why you would like to return it.
Step 2: The FlexEquip team will contact the nominated contact person to arrange a date for collection.
Step 3: A confirmation email will be sent. Please ensure someone is home for the collection.
FlexEquip will endeavour to process the collection in a timely manner. However, collection time frames can vary and depend on a number of factors. You can contact FlexEquip on 02 8877 0999 or
Question 3: How can I manage insomnia?
Sleep difficulties are a commonly reported symptom for people living with MND with some people experiencing more severe difficulties including insomnia. This may be due to ineffective (shallow) breathing caused by weakened breathing muscles, drooling saliva or dry mouth, pain cause by stiffness in joints and muscles, side effects of medications, and anxiety.
Top tips to manage insomnia:
- Establish a regular sleep routine
- Consider a respiratory assessment including the use of non-invasive ventilation
- Talk to your doctor about potential medications for pain or reducing anxiety
- Improve your positioning to support your breathing and salvia management.
Speak to your multidisciplinary care team to help you manage insomnia. This may include general practitioner, neurologist, palliative care team, respiratory specialist, or psychologist.
Learn more:
- MND Aware Living with MND - Aspects of care - Page 38-39
- Daily life with Motor Neurone Disease | Living with MND
Question 4: I have just been diagnosed with MND, who should be a part of my care team?
Building a multidisciplinary care team is an important step after diagnosis. Multidisciplinary care means coordinated care from a range of health and community professionals. Research shows that multidisciplinary care improves the quality of life of people living with MND and may also help people to live longer, potentially up to 7 - 24 months.
Examples of health professionals in a multidisciplinary care team:
- An occupational therapist (OT) helps to maintain mobility, function and independence. OTs provide advice about home modification, different ways of performing tasks and specialised equipment
- A physiotherapist provides advice about pain management, physical activity, mobility, stretching, breathing, coughing, and positioning
- A dietitian provides dietary and nutritional advice including advice about modified meals and hydration
- A speech pathologist helps with communication and swallowing difficulties. They can advise about communication aids and devices, swallowing techniques and food consistency
- A neurologist is the only specialist who can diagnose MND. They monitor disease progression
- A social worker, psychologist or accredited counsellor provides psychological and emotional support for people living with MND
- A respiratory specialist provides information and advice about breathing and timely access to non-invasive ventilation
- A palliative care team helps to improve quality of life for people with life limiting conditions, provide emotional support, and plan for future care.
Each person experiences MND differently. The health professionals you require, may change over time. Your MND Advisor can provide information about the health and community care professionals you may require.
Learn more:
Question 5: What is the role of my MND Advisor and how can they help me?
MND Advisors are qualified health and community care professionals with specific knowledge and experience related to MND. They can help people living with MND, their families and carers by:
- Providing information, resources, and education about MND
- Advise people living with MND and their families about accessing services
- Assisting in accessing government support including the National Disability Insurance Scheme (NDIS) and My Aged Care (MAC)
- Advocate on behalf of people with MND
- Run support groups for people living with MND and their families.
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
