Progression of MND

The progression of MND will look different in each individual, most people measure disease progression in terms of the difficulties that they experience in completing everyday tasks and activities.

There is help available to manage these symptoms and maintain function for longer, in the form of equipment, therapy, personal care, and medication.

Leg symptoms – as the legs become weaker or stiffer it will become more difficult to walk, some people lose the ability to lift their toes and the front of their foot up (foot drop), and the risk of tripping and falling increase.

Arm symptoms – weakness in the muscles of the arms and hands can make it difficult to perform everyday tasks such as dressing, brushing hair and teeth, doing up buttons turning on taps.

Neck muscle weakness - can make it difficult to lift the head and keep it upright.

Trunk muscle weakness - can make it difficult to move around in bed and to sit unsupported.

Emotions – for some people emotional responses are affected and they may laugh inappropriately or cry involuntarily.

Speech and swallowing – some people may have difficulty with producing speech, in some cases the voice may become very weak and quiet, or it may be that there is difficulty with speaking the words clearly as the facial muscles weaken. Swallowing can also become difficult when eating and drinking.

Breathing – as the respiratory muscles weaken it may become more difficult to breath, and more difficult to complete day to day activities.

Fatigue – as it becomes more difficult to perform everyday tasks the energy required to carry out these tasks increases, and this creates more fatigue.

Cognitive function – up to 50% of people experience mild cognitive changes, which can impact on the person’s ability to plan and make decisions, with some mild behavioural and/or personality changes being noticeable. Approximately 15% of people develop signs of frontotemporal dementia, which causes more pronounced behavioural changes.

For most people with MND the intellect and memory are not affected, nor are the senses of sight, hearing, taste, smell, and touch. MND does not directly affect bowel and bladder functions, although immobility and changes to diet in later stages may lead to constipation and changes in bowel function. In most cases, sexual function will not be affected until the later stages of the disease.

Speak to your support advisor for advice about who can help with managing these symptoms and changes in function.