Top 5 Frequently Asked Questions from December 2025

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 across NSW, ACT and NT. Whether you are living with MND, supporting a loved one, or working in the MND space, these are the answers you have been looking for.

Question 1: I am a health professional supporting a person with MND, how can I help them access equipment?

Timely access to equipment can make a significant difference to safety, comfort and independence for people living with MND.

If you are in a health professional role which would usually involve prescribing equipment, you can make a referral for as many items as clinically required from FlexEquip. Generally, this would include:

Occupational therapists may make referrals for assistive technology to assist with everyday living activities. These items commonly include wheelchairs, bathroom aids, hoists and pressure care cushions
Speech pathologists may make referrals for communication devices
Physiotherapists may make referrals for items to assist with walking, seating and transfers, such as walking frames.

For health professionals in other roles, we encourage you to support the person with MND to link with appropriate equipment prescribing professionals. The person’s MND Advisor can support with this.

Learn more:

Question 2: I am a carer, how can I help my loved one with MND to maintain their independence?

Maintaining independence is about supporting choice, dignity, and meaningful participation.

Top tips:

Encourage the person living with MND to use adaptive and assistive equipment such as adaptive cutlery or clothing, showers chairs, mobility aids, or communication devices
Adapt the home environment such as removing trip hazards, rearranging cupboards and draws so everyday items are easier to access
Seek advice from an occupational therapist about home accessibility and modifications, hand railings or ramps for example
Balance support with autonomy by encouraging the person living with MND to independently undertake activities of daily living as well as hobbies and other activities of interest
Help the person living with MND manage fatigue by adapting routines and scheduling rest time
Seek support and information from health professionals and carer support programs.

Learn more:

Question 3: I have just been diagnosed with MND, what is the life expectancy?

Life expectancy after diagnosis can vary significantly from person to person. It is important to remember that statistics describe populations, rather than individuals.

On average, life expectancy is 2-5 years after diagnosis. However, the type of MND diagnosed as well as the site of symptom onset may also influence life expectancy.

Learn more:

Question 4: I am interested in clinical trials, where can I find out more?

Clinical trials play a vital role in improving understanding of MND. Participation in a clinical trial may offer access to new therapies but it is not for everyone. Before enrolling it is important to understand the purpose, potential risks, benefits, and time-commitment involved.

Speak with your neurologist or MND Clinic about current clinical trials and eligibility criteria.

You can choose to enrol in the MiNDAUS Registry for access to research for registered participants which includes the possibility of clinical trials.

Learn more:

For Patients and Carers – MiNDAUS
List of clinical trials in Australia: Clinical trials in Australia
International clinical trial registry: ALS Trial Navigator: Empower Your Clinical Trial Search | ALS TDI
Podcast on clinical trials and drug treatments: MND Hub | Conversation with a Neurologist: Episode 3

Question 5: What are pressure sores and how can I prevent them?

Pressure sores are areas of damaged skin caused by prolonged pressure. For people living with MND, losing muscle and spending long periods of time without changing position can lead to pressure sores on heals, buttocks, elbows, shoulders, or the back of the head.

Top Tips for preventing pressure sores:

Use pressure care equipment such as pressure-reliving mattresses, cushions and armchair overlays, there is a range available from FlexEquip which your occupational therapist can request
Inspect skin regularly for early signs such as redness, warm or hard patches as well as sores, blisters or broken and cracked skin
Maintain adequate nutrition and hydration
Perform regular skin care including cleaning and moisturising
Regular repositioning to relieve pressure.

Early intervention is important. Consult your health care team if you start to notice changes.