Managing respiratory symptoms
This information is for health and social care professionals. You may also want to see our information for people living with or affected by MND on:
Motor neurone disease (MND) is a progressive and terminal disease that attacks the motor neurones, or nerves, in the brain and spinal cord. Respiratory muscle weakness occurs eventually in everyone with MND.
Effective management of respiratory function is likely to have a positive impact on quality of life for the person with MND. This information includes strategies for managing respiratory signs and symptoms.
It is important to find positions that make it easier for the person with MND to breathe. The ideal position is usually upright or slightly reclined, with the arms supported, rather than lying down. A semi-reclined position may be achieved by using a riser-recliner chair with good arm support, or a wheelchair with tilt-in-space. This position allows the diaphragm to move more freely and efficiently. In bed, it may help to raise the head, perhaps with more pillows or a profiling bed.
Massage and aromatherapy massage may be considered for people with MND who are anxious, short of breath or in the terminal stages of life. Relaxation techniques may be helpful for the relief of anxiety.
Some people with MND find that movement of air around the face sometimes helps when they feel breathless.
The aim is for the person to conserve energy so they can do what is important for them. An occupational therapist can advise on adjusting activities to reduce the amount of energy needed to perform them.
Some people with MND have found the use of a three or four wheeled walking frame helpful. The support provided by the frame fixes their arms and therefore the shoulder girdle. With the person’s weight supported by the aid, this helps them to make better use of the muscles used to breathe.
A respiratory physiotherapist can give advice on exercises to maximise lung capacity, muscle elasticity and protect against partial lung collapse and infection.
The MND Just in Case Kit is designed to hold medication for the relief of anxiety, choking and breathlessness. Its presence in the home can provide tangible evidence for people with MND and carers that fears have been addressed and practical help is at hand.
Not everyone will choose to have assisted ventilation, or can tolerate this intervention. As part of palliative care, symptoms such as breathlessness will need to be managed. Increasing doses of medication and increased levels of sedation may be required to control symptoms at the end of life.
This will also be necessary if the person with MND requests withdrawal of non-invasive ventilation (NIV).
For more information see: