People with motor neurone disease (MND) gradually lose the use of their voluntary muscles and often need assistance with personal care. They may also need support to cope with the emotional impact of a progressive and disabling illness. Access to appropriate aids and equipment, as well as providing emotional and psychological support, can help maximise the quality of life of people with MND.
Emotional aspects of MND
- Anxiety and depression are understandable emotions for people coping with MND. It may be helpful to:
- Share feelings with family or friends – talking through fears and worries can be very worthwhile.
- Communicate with other people coping with similar issues. Discuss your feelings with your doctor or other health professionals.
- Try to stay calm and concentrate on breathing to get through anxious periods.
- Set up a system so that you know you can contact someone to help you if you need it.
- There are times when a slight upset can cause an exaggerated response, such as crying or laughing. This is called emotional lability. Don't worry about this – try to treat it in a matter-of-fact way.
Sex and MND
Issues of intimacy and sexuality are about more than intercourse. They concern the need to communicate and receive love and physical closeness. While MND does not directly affect a person's ability to enjoy a normal sex life, the effects of the disease – such as fatigue, muscle wasting and dependence on others – can impact on sex. It may be helpful to discuss your concerns with a counsellor.
Using the toilet for a person with MND
Problems using the toilet and bathroom can be stressful for both the person with MND and their carer. Independence, privacy and safety are very important. Aids to help in using the toilet range from simple paper dispensers, grab rails and raised toilet seats to bidets, commodes and toilets with foot-operated spray washers and warm air dryers. Talking to an occupational therapist may be helpful.
Bathing for a person with MND
Warm baths and showers can have a soothing effect on muscles. However, they can also be difficult to get in and out of. Simple aids, such as grab rails, a bath board or seat, non-slip mats, lever taps, long-handled sponges and soap-on-a-rope, can all help people bathe themselves safely and in private. When bathing becomes too difficult, mechanical devices such as hoists and seats may help.
Skin care is important, so always make sure that the skin is properly dried after bathing, particularly in the folds of the underarm, breast and groin areas. It may help to:
- Make the bathroom warm.
- Dress in a towelling robe after bathing.
- Use a wall-mounted electric drier to dry the body.
Hair care for a person with MND
Washing hair may be easier to do with the person sitting or standing over a tray, bucket or sink, and with another person to help. Whichever method is preferred, it is best to use a baby shampoo that doesn't sting the eyes.
Ear care for a person with MND
Wash ears daily with warm water and rinse well before drying thoroughly. Don't clean the inner ear – ask your nurse or doctor what to do if a wax problem develops.
Eye care for a person with MND
Some people with MND find that, as their muscles weaken, they blink less often and so their eyes become dry and sore. Eyes can be cleaned using a wad of cotton wool soaked in clean warm water. If your eyes are sore, ask your doctor about eye drops.
Mouth and tooth care for a person with MND
Brush teeth carefully to prevent damage to gums after meals. Make sure that excess moisture doesn't collect in the mouth, as this can cause problems swallowing. It may be helpful to use an electric toothbrush. Low foaming toothpastes may be helpful.
Swabbing the mouth with non-alcohol based solutions of bicarbonate of soda (half a teaspoon to a glass of water), salt, peppermint oil or grapeseed oil can be an alternative to brushing teeth. An artificial saliva spray can help relieve a persistently dry mouth. Ask your doctor or speech pathologist to advise you on the appropriate mouth-care options for you.
Nail care for a person with MND
Nails should be kept short to avoid scratching. Cut toenails straight across and fingernails rounded. Consult a podiatrist if problems develop. Nail care aids include nailbrushes and files fixed to basins, walls or tables, and easy-grip scissors and clippers.
Shaving for a person with MND
Electric shavers are easier to use than traditional razors for people with limited movement or in need of help. They also enable new techniques, for example, holding the razor still and moving the face over it. You may want to try putting a larger handle on the razor.
Dressing for a person with MND
Take your time. Begin dressing on the weakest side and undressing on the strongest side. Clothing can be adapted to make dressing easier and there are some aids, such as Velcro, or hooks for doing up buttons.
Where to get help
- Your doctor
- Local community health centre (see the Local Services Directory)
- Motor Neurone Disease Association of Victoria Tel. (03) 9830 2122 or 1800 806 632
- Specialists such as neurologists, speech pathologist, occupational therapists, physiotherapists and psychologists (your doctor can refer you)
- Home care nurses (contact your local council)
- Social workers (contact your local council)
Things to remember
- As MND progresses, the person will need help with personal care.
- The right aids and equipment can help people with MND retain some independence and quality of life.
- Psychological support is also important.
- There are professionals who can help identify the appropriate resources, aids, equipment and support.
This page has been produced in consultation with and approved by:
Motor Neurone Disease Association of Victoria
Page content currently being reviewed.
Content on this website is provided for education and information purposes only. Information about a therapy, service, product or treatment does not imply endorsement and is not intended to replace advice from your doctor or other registered health professional. Content has been prepared for Victorian residents and wider Australian audiences, and was accurate at the time of publication. Readers should note that, over time, currency and completeness of the information may change. All users are urged to always seek advice from a registered health care professional for diagnosis and answers to their medical questions.