MND Australia
MND Info Line 1800 777 175. 9am to 4.30pm Monday to Friday.

How can health professionals help?

People with MND will likely see a range of health professionals. This is because MND is a complex condition that affects different areas of the body at different times.

Health professionals work together to diagnose, treat and care for people with MND as well as support people to manage their symptoms.

When you talk with health professionals about MND, you will hear a lot of new information. You will hear about the disease, its treatment, the people involved in your care, and how health and government systems work. This can feel really overwhelming.

Below are some simple tips that can help you when talking with health professionals:

  1. Jot down any questions before appointments so you don’t have to remember them.
  2. Check out mndconnect.org.au for relevant info or to learn more.
  3. If you can, bring someone along to the meeting for support.
  4. Don't be afraid to ask doctors and others to explain things if you're unsure.
  5. Taking notes during the appointment can be helpful. Your support person may do this for you.
  6. Keep a list of the names of your healthcare team, their role, where they work, and their contact info.
  7. Keep a notebook and pen, test results, referrals, info sheets, your medication and healthcare team details in one place. Bring the folder of information with you when you meet with members of your healthcare team.

Now let’s look at how specific health professionals can help.

General practitioners (GPs) and neurologists diagnose MND and decide on your treatment. This may involve referral, testing, and prescribing medications to treat MND. 

Other doctors that can be involved in your treatment include breathing specialists, rehabilitation consultants, and palliative care specialists.

The rate at which MND progresses varies depending on the type, and from person to person. Symptoms will worsen over time. However, support is available to help you live better for longer with MND.

A range of doctors and allied health professionals support people with MND to manage their symptoms. Common symptoms include muscle weakness, fatigue, difficulty speaking or swallowing, and breathing issues.

Health professionals may suggest assistive devices to improve your independence and comfort. These include mobility aids, communication devices, medication or other strategies. Due to the progressive nature of MND, regular review and support is required.

As MND progresses, you may have trouble with eating and swallowing.

Dietitians and speech pathologists work with people with MND and their caregivers to create personalised plans. These plans may include modifying the texture of food, nutritional supplements, or feeding tubes. These supports help to ensure you get enough nutrients and fluids.

Speech pathologists and occupational therapists help people with MND to communicate if speech declines. They teach strategies to support speech. They will advise on assistive technology (AT), such as using communication boards, writing, or eye-tracking devices.

Coping with MND is emotionally challenging. Psychologists, counsellors or social workers can give emotional support and coping strategies to help you manage the psychological aspects of the disease.

Physiotherapists and occupational therapists help people with MND maintain independence and quality of life.

A physiotherapist or physio helps you stay physically active and mobile. Physios can also show your family or carer how to safely help you move from one position to another, for example, moving from a chair to a bed. A physio can also help with techniques to support coughing and breathing.

An occupational therapist (OT) helps to maintain mobility, function and independence. OTs provide advice about home modification, different ways of doing tasks and how to select, obtain and adapt specialised equipment.

There are many different types of support available to assist people with MND at home. Social workers, MND advisors, care coordinators and case managers can explain what supports there are and how to access them. Support may include:

  • help around the house
  • transport
  • support with meals
  • personal care
  • home modifications
  • social support
  • respite care

MND is a complex condition that affects physical, emotional, and social wellbeing. With multidisciplinary care, doctors, allied health professionals and other support people work together to give comprehensive individualised care.

This multidisciplinary approach addresses the diverse needs of people with MND and enhances their quality of life. You commonly see this style of approach in multidisciplinary care or primary health care teams.

Doctors, nurses and social workers specialising in palliative care work with people with MND and their families to provide care. Palliative care teams help manage symptoms, reduce distress, and improve quality of life throughout the course of the disease. They also provide support and guidance about end-of-life care decisions, advance care planning, and bereavement support for families.