Every person with motor neurone disease (MND) experiences the disease differently, but there are a number of common strategies you can use 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, and 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:
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 about strategies, equipment and things that can support you to remain mobile for as long as possible and include:
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. They 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 the cheek pockets and this can cause mouth ulceration – damage to the inner lining of the mouth.
Each person’s physical abilities 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 the MND Association of England, Wales and Northern Ireland has developed a comprehensive Personal care guide that include information about what can make mouthcare easier.
Maintaining dental health for people with MND is important. Some MND symptoms may require seeing a dentist to make treatment modifications 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 a comprehensive information sheet: Information for dental teams
The guide includes information about:
For many people, exercise is enjoyable and brings them feelings of overall wellbeing. Exercise has many benefits beyond physical health. The effects of exercise in MND are not well understood, and more research is required to determine how exercise impacts muscles and nerves compromised by motor neurone disease, particularly around the effect of various intensity and types of exercise.
Research suggests, however, that physiotherapist led exercise can 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 a resistance program, an active assisted, or a passive program.
It is important for people with MND not to exercise to the point of excessive fatigue, or in a way that puts them at risk of injury, such as through falling.
What you can safely do will depend on the stage of your motor neurone disease and how it has impacts you physically. For some, early on they may continue to take regular walks and later participate in activities such as hydrotherapy when walking has become too difficult.
Discuss what sorts of exercise would work best for you with your neurologist and physiotherapist.
You may also find that the connection you share with friends and others through exercise is important. Finding ways to spend time with others doing exercise that works for you could help with managing stress, moods and emotions.
Living with MND and holidaying do present some challenges, but with a bit of thought and planning you can find a way to have a break away with family and friends.
Some of the most important things to think about are:
The links below are from Australian and international sites and can help with planning for a holiday. While there may be some information in the international resources that don’t apply to Australia they do serve as a good resource to encourage thinking about what you may need to plan for or investigate more fully. Your MND advisor or support coordinator are also very good 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