Motor-neurone disease (MND) is a fatal disease that affects the muscles involved in breathing, swallowing and moving. While there is no cure, there are things you can do to make life easier and more comfortable, and prepare yourself and your loved ones for the future.
Treatment for MND is largely aimed at easing symptoms. Some medications help with cramps, stiffness, drooling, breathlessness and pain, and Riluzole seems to slow the cell damage. Apart from these drugs, various tips, techniques and aids can increase your comfort and quality of life:
People with MND generally experience problems with movement. Many are vulnerable to tripping and falling. You may eventually need help from a carer to get around and with daily tasks like washing, dressing, eating meals and using the toilet.
You may wish to adapt your home to make it safer and easier to navigate. Consider moving the bathroom downstairs, installing a “wet room” for easy washing, and widening doorways to allow wheelchair access.
Occupational therapists and physiotherapists can advise about the various aids and devices available to assist with mobility and independence. These include:
– Wheelchairs, scooters, walking frames and wheeled trolleys
– Electrically adjustable beds and chairs
– Shower seats, toilet risers, bathroom handrails and hoists
– “Grabbers” for picking things up
– Arm and wrist supports
– Electric stairlifts and bathlifts
– Easy-to-hold utensils and other objects like toothbrushes
– Adaptations to help with computer use, such as eye-tracking systems, special mouses and keyboards
– Car adaptations, like swivel seats and hand controls
As the respiratory muscles weaken, breathing becomes shallow, lung capacity decreases and physical activity gets harder. You may experience shortness of breath, disturbed sleep and fatigue. A weaker cough makes it hard to clear your throat.
Tips for breathing easier include:
– A physiotherapist can help with breathing exercises and coughing techniques.
– Sitting may be easier than lying down. Sit up straight and keep yourself well supported.
– Breathe in a calm, deliberate way if you feel short of breath.
– Try to avoid colds or flu; ask your doctor about the annual flu vaccination.
– A ventilated, smoke-free room, at a comfortable temperature, is ideal.
– You may require a mechanical ventilation aid – initially at night, and increasingly during the day. Air is filtered and pumped into the lungs via a face mask or nose tube.
MND affects your voice and can make communication frustrating. A speech therapist can teach you ways to make your voice sound clearer. Assistive technology, such as texting, email or voice software, can become useful later on. People with weakness in the hand or arm, or who are unused to computers, may prefer to use picture charts or sign language. Battery-powered voice amplifiers are also available.
Many people with MND have difficulty swallowing. This affects nutrition and speech, and makes people vulnerable to chest infections. Occupational therapists and dieticians can help you adapt how you eat and drink. These tips might be useful:
– Take your time eating and drinking.
– Make sure the food is tasty and attractively presented.
– Sit up straight, head upright, when eating.
– Puréed foods and thickened drinks are easier to swallow.
– Special utensils can help, such as shallow spoons or light cups with wide rims. Some people may need to use spouted cups or syringes.
– Very small sips and bites make swallowing easier and reduce the risk of inhalation.
– Certain fruit juices and papaya enzyme tablets can break down thick saliva.
If the swallowing problems become too severe, you may need a gastrostomy. This involves a thin feeding tube being inserted into your stomach under anaesthetic.
Special cushions and mattresses can relieve pressure on the body. Warm packs and baths – not too hot – also relieve pain. Gentle, passive exercise (in which your body is moved by a carer or device without effort from your own muscles) can reduce pain from stiff shoulders and other joints.
These tips may improve energy levels:
– Rest between or before tiring activities. Move slowly and pause if you feel breathless. Where possible, sit rather than stand.
– Ask your physiotherapist for advice on exercises to reduce stiffness, tension and pain.
– Don’t overdo the exercise: stop if you become very tired or if you feel cramps, weakness or breathlessness.
– Have regular checkups with a respiratory specialist.
The discomfort of immobility; the pain of stiffness; excessive saliva or a dry mouth; breathing problems; the worry and stress of coping with MND – all of these things can disturb your sleep. You may find these tips help:
– Sleep in a quiet, dark, comfy environment.
– Keep to a fixed bedtime; avoid napping in the day.
– Regularly adjust your position in bed. (If you struggle to move, an electric bed can be adjusted to different positions.) Smooth sheets and light bedclothes are easier to move around in.
– Side rails and pillows give support, and special mattresses and pillows distribute body pressure. Lifting the head and chest with a pillow also eases breathing and prevents saliva and secretions pooling.
– Before bed, do stretching or range-of-motion exercises to reduce joint pain.
– Avoid exertion, caffeine, smoke and heavy meals before bedtime.
– Relaxation techniques, like deep breathing, light massage or listening to soothing music, can help.
– Sleep studies – tests to record body activity while asleep – can identify a sleep problem.