Motor neurone disease (MND) - help with daily activities

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.

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.

If you are caring for someone with MND, talk to an occupational therapist, physiotherapist or district nurse about lifting techniques and aids.

Fatigue is common with MND. Factors that may lead to fatigue include immobility, overexertion, sleep disruption, pain, weakened breathing, stress, anxiety, smoking, alcohol and some medications. Symptoms of fatigue 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 labor-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 (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 your 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 is a common problem for people with MND. Ways to avoid or reduce it include:

• sitting up straight with the back
• head supported to relieve pressure on the lungs
• to alleviate saliva or mucus problems speaking to professionals such as speech pathologists
• physiotherapists about techniques to reduce breathlessness

People with MND are prone to coldness. To keep warm: try gentle massage and changing position to help circulation and stimulate warmth. 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. 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#

Alleviate cramp by gently massaging the affected part and keeping it warm until the pain subsides.

Talk to a physiotherapist about how physiotherapy and careful positioning can help. Talk to your doctor about whether muscle-relaxing drugs may help to relieve your pain – they can be helpful, but they can also have side effects such as drowsiness and weakness. Use regular turning and re-positioning to prevent sore areas of skin from developing, especially where bones are close to the surface.

Weak neck muscles can cause the head to drop.

You can: Use a reclining chair, headrest, collar or chin support#

Use a velcro or elasticized band placed around your forehead and attached to the back of the headrest of your chair.

Speak to your occupational therapist for advice#

There are many aids and devices that can help you continue to do tasks independently. These include:

• lightweight utensils bowls

Speak to your occupational therapist for advice: Specialists such as neurologists, speech therapists, occupational therapists, physiotherapists, dietitians and psychologists Moving#

• about with MND Tiredness MND Insomnia MND Breathlessness
• MND checking room airflow (fan
• open window)
• temperature avoiding contact with people with colds or flu – ask your doctor about influenza (flu) vaccination fatigue management breathing exercises Coldness
• MND wear warm clothing preferably woolen use sheepskin slippers seat pads
• rugs leg warmers Swelling MND Pain
• cramp with MND Neck weakness from MND Arm function
• MND specially designed cutlery with large handles
• straps plates with deep rims or a guard cups with two handles
• flexi-straws

Where to get help#

Key Points#

• Fatigue is common with MND
• Symptoms of fatigue include slower speech and movement, shortness of breath and lack of interest in daily planning
• Take regular breaks and stop an activity if it causes breathlessness
• Breathlessness is a common problem for people with MND
• It may help to: Talk to your doctor about the possible causes and treatments