Managing day-to-day

Cramps tend to happen in the early stages of MND. Pain and discomfort are more common in the later stages of MND.

Causes of pain and discomfort include:

• loss of muscle strength, which may make it harder to keep large joints stable and maintain spinal posture
• passive injury to joints due to muscle weakness (e.g. shoulder joint damage during assisted transfers)
• muscle cramps
• muscle spasms
• skin pressure
• constipation, and
• pre-existing conditions such as arthritis.

Your healthcare team can help find the best strategies to manage pain. Ways of managing pain include:

• early referral to a physiotherapist and occupational therapist (OT)
• careful positioning to support head, trunk and weight of limbs
• regular repositioning by a carer for patients unable to reposition themselves
• passive limb movements to relieve muscle and joint stiffness
• using aids, positioning and transferring techniques and pressure relieving equipment
• complementary therapies, such as massage, may also be helpful

Pain medications

Medications that relieve pain, cramps and spasms can help improve your comfort and quality of life.

Many different kinds of medications are available. You can buy some of these over-the-counter. Others may need a prescription from a doctor.

Ask your doctor or pharmacist about what pain medications they think will work best for you. Remember to check with a pharmacist to see if an over-the-counter medicine has any side effects or could cause issues with other regular medication that you take.

Most people with MND develop mobility issues. The extent and kinds of problems they can cause vary from person to person.

Some people tend to fall, sometimes without warning. Falls can be dangerous and lead to injury. Consult health professionals to get the best advice to protect yourself from falling.

OTs or physiotherapists can support you to remain mobile for as long as possible. Some of the things they can help you with are:

• mobility aids, such as walking frames or ankle foot orthotics (e.g. a brace that holds your foot and ankle in the right position) 
• wearing the right footwear
• strategies that prevent falls
• managing fatigue, and
• making your home environment safe

Fatigue (extreme tiredness) is a common symptom of MND. It may be due to depression, poor sleep, abnormal muscle functioning, poor nutrition or weakened breathing muscles.

Your health professional team can help you manage fatigue. Depending on your symptoms, speaking to a respiratory specialist, dietitian, speech pathologist, nurse, or physiotherapist may help.

Knowing what makes you tired, and how to conserve energy, can improve your quality of life. Your care team can help you learn about ways to conserve energy by using labour-saving devices and breathing support options.

Some tips for managing fatigue are:

• plan activities in advance
• do harder tasks or go out at times when you usually have more energy
• conserve energy by not rushing
• listen to your body and don’t push yourself
• stop and rest if it gets hard to breathe
• take regular rest periods between activities and before going out
• learn about exercises to reduce stiffness, muscle tension, or pain (ask your physiotherapist)
• make the personal environment safe and easy to move around (ask your OT)
• ask for help if you need something done but feel too weary to do it
• take shortcuts where possible (e.g. sit rather than stand, get dropped off at the door of the doctor’s room rather than walking from the car park)
• eating well (talk with your speech pathologist or dietitian)
• use aids and equipment to make tasks easier
• learn about caring for your mental health and become aware of your moods and emotions, if you’re feeling low talk with people you trust or your GP
• try to establish a regular sleeping pattern.

Mouth care

Mouth care is essential for people with MND. Many people have problems with swallowing or tongue and throat muscle weakness.

The tongue helps move food particles around the mouth. When the tongue is weak, food can get trapped in pockets of the cheeks. This can cause mouth ulcers (damage to the inner lining of the mouth).

Each person’s physical ability with their mouth and experience of MND is different. Your healthcare team can find out what works best for you.

Tips and activities that can help include:

• inspect your mouth each day for signs of oral thrush or ulcers
• brush teeth carefully after meals – it may help to use an electric toothbrush
• find ways to drain excess fluid from the mouth while brushing, for example, sitting upright with the chin angled downward may help fluid to drain
• use a low foam toothpaste such as Biotene, which reduces the need to clear foam from the mouth
• if you cannot brush your teeth, swab the mouth with a cotton wool bud soaked in bicarbonate of soda and water (half a teaspoon to a glass of water) to keep the mouth clean

To learn more about what can make mouthcare easier, you can find tips and information in the UK MND Association's comprehensive Personal Care Guide

Dental care

Dental health is important. You may need to see a dentist to make treatment changes so that dental care can be provided safely.

Let the dental surgery know that you have MND when you book an appointment. Tell your dentist if you have issues with your swallowing, speech and/or breathing. You may like to take a support person with you to your dental appointment, particularly if communication is an issue.

The UK MND Association has a downloadable and printable guide called Information for Dental Teams, which you can take along to your appointment.

MND weakens muscles. This affects your balance and the ability to move. However, regular exercise can help you maintain your strength, mobility, and overall wellbeing for longer.

Exercises should be specially designed for you. They should also be supervised by healthcare professionals who are knowledgable about MND. These professionals will ensure you're doing the right exercises at the right level to avoid fatigue and sore muscles. They will prepare an exercise plan which covers things like type of exercise, intensity and number of repetitions.

What you can safely do will depend on the stage of MND progression and how it has impacted you physically. For those with MND in its early stages, continuing to take regular walks may be possible.

When walking has become difficult, it may be easier to participate in activities such as hydrotherapy (activities in a pool). You can discuss what sorts of exercise would work best for you with your care team.
Learn more about physical activity and MND

Having a holiday while living with MND can present challenges. But, with some thought and planning, you can still have an enjoyable time away with family and friends.

Some of the most important things to think about are:

• accessible transport
• accessible accommodation
• travel insurance
• where to access medical support while away
• whether your NDIS plan will support your paid carer/s or personal care assistant/s to come with you or fund personal care support from a local provider.

Some of the resources below could help you plan a holiday. Not all advice from international sources is relevant, but they can help with your planning. Your MND advisor or support coordinator are also valuable sources of information.

• Chronic Illness Alliance: information about travel insurance
• Accessible Accommodation: information about accessible accommodation located all around Australia
• Qantas: information about travelling with a carer and fare reductions for carers on domestic flights
• Disabled Holidays: information about holidays for people with motor neurone disease
• Transport, travel and holidays: a resource from the UK MND Association