Every person with motor neurone disease (MND) experiences the disease differently. There are common strategies you can use, however, to help manage the day-to-day reality of living with MND.
Finding ways to better deal with discomfort, pain, mobility issues, mouth care and other challenges of living with MND can make things easier. You may also find that you improve your ability to take pleasure in everyday life.
Below you will find general information about strategies and things you can do to manage MND on a day to day basis. Make sure to speak with a health professional or your MND advisor about strategies you feel may help best.
The effects of MND, and its rate and pattern of progression vary significantly from person to person, so it is important to get advice from qualified health professionals that is tailored to suit your needs.
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:
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:
Complementary therapies, such as massage, may also be helpful.
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:
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:
Additionally, see if you can:
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:
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.
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:
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.
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:
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.