Common difficulties
People with MND may experience some of these difficulties as the disease progresses.
Pain
Pain and discomfort are not caused directly by MND, as the neurones carrying sensory messages to the brain are unaffected. While most people experience little or no pain at any stage of the illness, others may experience some pain or discomfort such as:
- Cramps in the muscles, especially in the legs. These are most common in the early stages of the disease and may occur with exercise or at rest.
- Pain and stiffness in joints can occur because weakness of the muscles around a joint allows excessive strain to be transmitted directly through the ligaments and soft tissues.
- ‘Frozen shoulder’ – where movement at the shoulder causes pain – can occur through inactivity of muscles of the shoulder.
- Pain in the muscles of the neck, shoulder, hip and knees can occur with the loss of normal postural control, which occurs when muscles are weak. The discomfort is characteristically improved by postural or positional change. This problem is worse in people who are too weak to readily move or reposition themselves.
Consult your physiotherapist for advice and GP for medication.
Muscle cramps and spasms
May be relieved by changing position when relaxing in a chair or bed. If this is not helpful the doctor may be able to provide a muscle relaxant.
Stiff joints
Can be helped with gentle exercise (consult a physiotherapist).
Incontinence
Incontinence may occur if mobility is restricted and getting to the toilet becomes more difficult. An occupational therapist and community nurse can provide advice if this is a problem.
Bowel problems
The bowel may become constipated due to restricted mobility and/or changes to diet. Increasing fluid and fibre may help, or ask your doctor to prescribe a laxative. Diarrhoea may be the overflow from a severely constipated bowel. Ask your district nurse or GP for advice.
Saliva and mucus
If swallowing becomes a problem an excess of saliva may pool in the mouth, or the saliva may become thick and sticky. If this happens a GP will be able to prescribe medication to help. Consulting with a speech language therapist may also be helpful. For more information on saliva control see download the PDF below.
Coughing and feeling of choking
These may occur as a result of food or saliva becoming lodged in the airway, a speech therapist can provide techniques to help manage these episodes. Medications may be prescribed by the GP or specialist.
Breathing
Eventually your breathing muscles will become affected by MND. When this happens a breathing assessment from a respiratory consultant is needed. Please see Breathing and MND (above) for more information.
Cognitive changes
Some people living with MND will experience difficulties with memory, learning, language and poor concentration. This is commonly known as cognitive change. Some of these difficulties may be quite subtle, while for others the change can be more pronounced and noticeable.