Motor neurone disease (MND) affects the muscles that enable us to move, speak, breathe and swallow. Problems associated with the weakening of these muscles include difficulty moving about, breathlessness, fatigue, difficulty with speaking and swallowing, sleeping problems (insomnia), stiffness, swelling and cold limbs. Techniques and aids can help to ease these problems.
Moving about with MND
People with MND have a tendency to fall and may need help moving about. It’s important to take care when lifting someone with MND, as it can cause discomfort to the person lifting and the person being lifted. Talk to an occupational therapist, physiotherapist or district nurse about lifting techniques and aids.
Tiredness and MND
Fatigue is common with MND. Factors that may aggravate fatigue include immobility, overexertion, sleep disruption, pain, weakened breathing, stress, anxiety, smoking, alcohol and some medications. Symptoms include slower speech and movement, shortness of breath and lack of interest in daily planning.
Conserving energy can improve quality of life. It may help to:
- Plan activities in advance.
- Respect your body’s limitations and pace yourself.
- Find short cuts where possible, and sit rather than stand.
- Use gadgets and labour-saving devices to make tasks easier. Make your environment easy to move around in.
- Take regular breaks and stop an activity if it causes breathlessness.
- Establish a regular sleeping pattern.
Insomnia and MND
Insomnia (sleeplessness) can be caused by discomfort, muscle pain and stiffness, shortness of breath or a dry mouth, or any combination of these and other things. To encourage sleep:
- Go to bed at the same time each night.
- Make sure your bedroom is quiet, cool, dark and comfortable.
- Avoid heavy meals and caffeinated drinks.
- Change position in bed often.
- Use satin or silk sheets to make it easier to move.
- Use pillows to spread body pressure or to raise the head and chest for improved breathing and swallowing.
- Try equipment, such as an electric bed, that can be adjusted to different positions.
- Talk to your doctor about medications that may help.
- Talk to your physiotherapist about exercise or massage that may promote relaxation.
Breathlessness and MND
Breathlessness is a common problem for people with MND. Ways to avoid or reduce it include:
- sitting up straight with the back and head supported to relieve pressure on the lungs and to alleviate saliva or mucus problems
- checking room airflow (fan, open window) and temperature
- avoiding contact with people with colds or flu – ask your doctor about influenza (flu) vaccination
- fatigue management
- breathing exercises
- speaking to professionals such as speech pathologists and physiotherapists about techniques to reduce breathlessness.
Coldness and MND
People with MND are prone to coldness. To keep warm:
- Wear warm clothing, preferably woollen.
- Use sheepskin slippers, seat pads, rugs and leg warmers.
- Try gentle massage and changing position to help circulation and stimulate warmth.
Swelling and MND
Your feet and legs can swell due to a build-up of fluid. It may help to:
- Talk to your doctor about the possible causes and treatments.
- Keep your legs elevated with cushion support.
- Use massage and gentle exercise to help disperse the fluid.
- Ask your doctor about elastic stockings and crepe bandages.
Pain, stiffness and cramp with MND
People with MND may suffer some pain from stiff joints, muscle tension and cramp. To help alleviate the pain:
- Support your arms by using slings or specially adapted clothing when walking
- When seated, use cushions, armchairs or tables for support.
- Cramp can be alleviated by gently massaging the affected part and keeping it warm until the pain subsides.
- Physiotherapy and careful positioning can help
- Muscle-relaxing drugs may be helpful, but can have side effects of drowsiness and weakness
- Regular turning and re-positioning will help to prevent sore areas of skin from developing, especially where bones are close to the surface.
Neck weakness from MND
Weak neck muscles can cause the head to drop. You can:
- Use reclining chairs, headrests, collar or chin supports.
- Use a velcro or elasticised band placed around the forehead and attach it to the back of the headrest of the chair.
- Speak to your occupational therapist for advice.
Arm function and MND
There are many aids and devices that can help you continue to do tasks independently. These include:
- specially designed cutlery with large handles and straps
- plates with deep rims or a guard
- cups with two handles and flexi-straws
- lightweight utensils and bowls. Speak to your occupational therapist for advice.
Where to get help
- Your doctor
- Motor Neurone Disease Association of Victoria Tel. 1800 806 632
- Specialists such as neurologists, speech therapists, occupational therapists, physiotherapists, dietitians and psychologists
Things to remember
- As MND progresses, the person will need help with daily tasks.
- The right aids and equipment can help people with MND retain some independence and quality of life.
- 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.