Managing day-to-day

While cramps tend to occur 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 muscular strength and the resulting inability to stabilise large joints 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.

It is important to speak with a health professional involved in your care to find out 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 for patients unable to reposition themselves
• passive limb movements to relieve muscle and joint stiffness, and
• seeking the advice of allied health professionals on the most appropriate 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, including those that can be purchased over-the-counter, or with a prescription from a doctor.

Ask your doctor or pharmacist about what pain medications they think will work best for you. It is also worth checking 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 problems. The extent of problems and the kinds of difficulties they can cause vary from person to person. 

Some people have a tendency to fall, sometimes without warning. Falls can be dangerous and lead to injury. It is important to consult health professionals to get the best advice to protect yourself from falling.

OTs or physiotherapists can provide advice on strategies, equipment and things that can support you to remain mobile for as long as possible, including:

• using appropriate 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 appropriate footwear
• developing strategies that prevent falls
• managing fatigue, and
• making your home environment safe.

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

Talk about the best ways of managing fatigue with your health professional team (respiratory specialists, dietitians, speech pathologists, nurses, physiotherapists and rehabilitation staff). Your team can help you can learn about energy conservation techniques, labour-saving devices, nutrition and respiratory support options that can help to alleviate fatigue.

By recognising the factors that worsen fatigue, and learning how to conserve energy, you can improve your quality of life.

Some tips for managing fatigue are: 

• plan activities in advance, and undertake heavier tasks or go out at times when you normally have more energy
• conserve energy by not rushing
• listen to your body and do not exercise to the point of excessive fatigue
• stop and rest if breathlessness occurs
• be sure to take regular rest periods particularly between activities and before going out
• learn about exercises to alleviate stiffness, muscular tension, or pain (ask your physiotherapist)
• make the personal environment safe and easy to move around (ask your OT), and
• ask for help if you need something done but feel too weary to do it.

Additionally, see if you can:

• eat well with MND (Speech Pathologists and Dietitians have lots of tips and tricks about maintaining nutrition)
• use aids and equipment that can make tasks easier
• be aware of your moods and emotions and if you’re feeling low, reach out for support (talking with people you trust and your GP is a good place to start)
• take shortcuts where possible (e.g. try simple things like siting rather than standing, getting dropped off at the door of the doctor’s room rather than walking from the car park), and
• try to establish a regular sleeping pattern.

Mouth care

Mouth care is essential for people with MND, and particularly for those who have swallowing difficulties or varying degrees of tongue and throat muscle weakness. Immobility of the tongue decreases the natural ability to move food particles around the mouth. Food can become trapped in pockets of the cheeks this can cause mouth ulceration (damage to the inner lining of the mouth).

Each person’s physical ability with their mouth and experience of MND will be different. You will need to explore what works best for you by speaking with a health professional or member of your support team.

Strategies and activities that can help include: 

• inspecting the person’s mouth each day for signs of oral thrush or ulcers
• brushing teeth carefully after meals. It may be helpful to use an electric toothbrush
• finding ways to drain excess secretions from the mouth while brushing, which will vary between people (e.g. for some, sitting in an upright seated position with the chin downward may help with fluid drainage)
• using low foam toothpaste (spitting out the foam from toothpaste can be very difficult when a person cannot spit due to muscle weakness. Low foaming toothpaste, such as Biotene, reduces the need to clear foam from the mouth), and
• swabbing the mouth with a cotton wool bud soaked in bicarbonate of soda and water (half a teaspoon to a glass of water) will help keep the mouth clean for those who cannot brush their teeth.

To learn more about what can make mouthcare easier, you can find tips and information in the MND Association of England, Wales and Northern Ireland comprehensive Personal care guide.

Dental Care

Maintaining dental health with MND is important. Some MND symptoms may require seeing a dentist to make treatment changes for the safe provision of dental care. When booking an appointment at the dentist, let the receptionist know that you have MND and may have issues with your swallowing, speech and/or breathing.

Some people may like to take a support person with them to their dental appointment, particularly if communication is an issue.

To learn more the MND Association of England, Wales and Northern Ireland has developed comprehensive Information for dental teams. The guide includes information about:

• MND and oral health
• summary of treatment modifications
• muscle weakness and reduced mobility
• bulbar weakness (weakness that impacts talking, chewing and swallowing)
• respiratory problems (breathing muscle weakness)
• cognitive change and dementia
• speech and communication difficulties, and
• strategies for mouth care at home.

For some people living with MND, certain kinds of physical activities can be enjoyable, and bring feelings of wellbeing. Activities like gardening, yoga, stretches and others that involve physical movement can help strengthen "healthy" muscles. Feeling connected to others through activities, getting outdoors and doing enjoyable things may also help relieve stress and improve mood.

Research suggests, however, that effects of some physical activities in MND, such as exercise, are not well understood. More research is required to determine how exercise impacts muscles and nerves compromised by MND, and in particular, the effect of various intensities and types of exercise.

If you are interested in physical activities, it's best to first speak with a member of your healthcare team about what you can do.

A physiotherapist, for example, can help you work to maintain joint range of movement, prevent contractures, reduce stiffness and discomfort and optimise function and quality of life. Physiotherapists can help guide you and consider your level of physical function. You may be able to participate in "resistance", "active assisted" or "passive" programs.

Fatigue is also an issue for physical activity with MND. It is important for people with MND to avoid doing too much, and to the point of excessive fatigue. Or participating in activities that risk injury, such as through falling.

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).

Make sure to discuss what sorts of exercise would work best for you with your neurologist, physiotherapist or other members of your healthcare team.

Learn more about physical activity and MND

Living with MND and holidaying do present challenges. But, with some thought and planning, you can live with MND and still find ways of having 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 should you need it while away, and
• whether your NDIS plan will support your paid carer/s or personal care assistant/s to accompany you or fund personal care support from a local provider.

More information

Australian and international sites and can help with planning for a holiday. Please note that some advice from international resources is not relevant, but they can encourage thinking about what you may need to plan for, or investigate more fully. 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 MND Association of England, Wales and Northern Ireland which includes information about travel and transport, planning a holiday and air travel and ventilation for MND.