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There are a number of problems that often develop in the course of MND:

• difficulty speaking (dysarthria)
• difficulty breathing (dyspnoea)
• difficulty swallowing (dysphagia) and consequent weight loss
• pain and spasms
• impaired mobility and self-care

Difficulty speaking
At some stage, most people with MND develop weakness of the muscles in the tongue, face, throat and larynx. This causes difficulty speaking clearly - a difficulty that tends to worsen over time, with speech becoming gradually more slurred. Help is available from speech therapists and occupational therapists.

The sense of isolation, frustration, anxiety, sadness and loss of self esteem that are experienced by some people with communication difficulties should not be underestimated by friends and family, who have a vital role to play in making sure the person does not feel cut off.

What can be done to help? Speech therapists will advise on ways to improve communication, including:

• slowing down and emphasising key words
• using signals and phrasing questions in such a way that they require a simple yes or no answer
• avoiding interruptions
• the use of communication aids, including computerised systems with a speech  synthesiser where appropriate

Occupational therapists will advise on:
• the best seating position
• the use of switches, pointers, alphabet and word boards

Difficulty breathing
Difficulty breathing is due to weakness of the ventilatory muscles in the chest wall, back and neck, and is often associated with difficulty speaking. It can lead to headaches, especially on waking, because of an increased level of carbon dioxide in the blood, and sleep may be disturbed due to the lower levels of oxygen in the blood. Tests may be carried out on the lungs to reveal the extent of the problem, and an assessment may be made at a specialised respiratory centre in some cases.

What can be done to help? Attention to posture, e.g. sitting in a more upright position, and breathing exercises, may be very helpful, and the physiotherapist can help when coughing is difficult. Oxygen therapy may be given at night, and some people may also benefit from assisted ventilation, usually given through a face mask.

Difficulty swallowing
About two-thirds of people with motor neurone disease are affected at some stage by this problem. It can lead to weight loss, thirst and fatigue, and may result in more frequent chest infections.

What can be done to help? Speech therapists can provide helpful advice on eating and swallowing. They will also give advice on holding the head in the best position to ease the problem. There may be an excess of saliva, which can cause soreness of the lips and face. There are a variety of medications that can be tried to decrease the level of secretions.

Feeding by a naso-gastric tube (a fine plastic tube passed through one nostril into the stomach) is a useful temporary measure, but often the best treatment is to have a PEG (Per-cutaneous Endoscopic Gastrostomy) fitted. This is a minor procedure in which a tube is passed into the stomach through a tiny hole in the abdominal wall. The operation is carried out using a flexible telescope passed into the stomach through the mouth, called an endoscope. This is done under local anaesthetic. The PEG enables a fluid diet to be given through the tube, while some food can still be taken by mouth if it can be swallowed safely. This means that lost weight can be put back on, and it generally makes people feel much better. The dietician has an important role in helping with diet and with mouth and saliva problems. They will also help to control calorie and fluid intake, and will generally keep an eye on the PEG to make sure everything is as it should be.

Pain and spasms
These are due to muscle cramps, spasticity and sometimes to stiff joints, pressure on the skin and colic linked with constipation.

What can be done to help? The physiotherapist will show the person with MND and the person caring for them ways of preventing spasms and cramps. Constipation is a common problem caused by loss of mobility, change of diet, medication or weakened pelvic floor muscles.

Drugs such as baclofen, dantrolene and tizanide can be used to control spasticity. Cramp can be helped by quinine sulphate. Ordinary tonic water contains a small amount of quinine and this is a more pleasant and often effective way of preventing cramp. Some people have found that low levels of calcium, manganese and magnesium are helpful in reducing cramp. Swollen ankles may be uncomfortable, and can be relieved by keeping the legs up, wearing support stockings, and sometimes taking diuretic drugs.

Impaired mobility and self-care
These are the major disabilities caused by MND. Problems with getting around and the ability to look after yourself develop as the disease advances. For example, it may become difficult to get to the toilet, or outdoors, without substantial help from a carer. The ability to drive may be lost. Moving from a bed to a chair, or from one room to another becomes more difficult, and dependence on others for activities of daily living is increased. Naturally, this dependency can be frustrating and cause loss of self-esteem and self-worth.

These problems are not due to failure on the part of the person with MND, but to the effects of the disease. Access to events outside the home is important in this phase of the disease, and may require special transport facilities, arranged either through Social Services, or through the help of friends, or other organisations. A mobility allowance is available when the level of disability is such that the person qualifies for it, but it often takes time for this to go through the system. Other benefits are available once disability is recognised by Social Services, including help with telephone bills, access to professional carers and nursing help at home.

It is advisable to get advice about a suitable wheelchair for indoor and outdoor use before mobility is affected, even though this may be a depressing prospect. Some people with MND find the use of an electrically-propelled chair a tremendous boon, since modern machines of this type are reliable, may be dismantled, with assistance, for transport in trains, cars and planes, and provide rapid movement indoors and outdoors. It takes time to get hold of this kind of chair, and it is best to think ahead and make plans at a stage when it may not actually be needed.

Social Services may help to adapt the home to deal best with the disability, by fitting the bathroom and toilet with handrails, by supplying a shower and stool so that the person does not have to rely on a bath, and by fitting ramps rather than steps into and out of the house. The physiotherapist and occupational therapist will be able to discuss what is likely to be best for each individual.

The Motor Neurone Disease Association (see final section, for contact details and freephone helplines for the MND Association in England, Wales, Northern Ireland, Scotland and Ireland) is very helpful in putting people with MND and their carers in touch with local services, and also in offering advice and information from their head office and through a nationwide network of Regional Care Advisers. The Motor Neurone Disease Association also provides equipment for people with MND that they can borrow free of charge. The Association funds research into the cause and treatments for MND and organises national and international conferences for people with MND, carers and researchers.