Motor neurone disease (MND) is also known as amyotrophic lateral sclerosis (ALS) and Lou Gehrig’s disease. It is a rapidly progressing neurological disease. MND often begins with weakness in the muscles of the hands, feet or voice, although it can start in different areas of the body and progress in different patterns and at different rates.
People with MND become increasingly disabled. Life expectancy after diagnosis is one to five years, with about 10 per cent of people living 10 years or more. The needs of people with MND are complex and vary from person to person.
Symptoms of MND#
Symptoms can include:
- muscle aches, cramps and twitching
- clumsiness and stumbling
- weakness or changes in the hands, arms, legs and voice
- slurred speech, and difficulty swallowing or chewing
- fatigue
- muscle wasting and weight loss
- cognitive change (changes in thought processes)
Physical and cognitive effects#
The physical effects of MND can include emotional lability, where a slight upset can cause an exaggerated response such as crying or laughing, as well as respiratory changes.
It was once thought that MND only affected the nerve cells controlling the muscles used to move, speak, breathe and swallow. However, it is now known that up to 50 per cent of people with MND can experience changes in cognition, language, behaviour and personality. Most people experience relatively mild changes.
As the disease progresses, a person may:
- become increasingly dependent on others for all aspects of day-to-day activity
- develop generalised paralysis (paralysis of both sides of the body)
- lose speech and have difficulty swallowing
- become breathless and experience sleep disturbance
- experience mild cognitive and behavioural change
Causes of MND#
The causes of MND are unknown, but research worldwide includes studies on the growth, repair and ageing of motor neurons. Areas being explored as possible factors include:
- exposure to viruses
- exposure to certain toxins and chemicals
- genetic factors
- inflammation and damage to neurons caused by an immune system response
- nerve growth factors
Familial (hereditary) MND accounts for about 5 to 10 per cent of cases. Several gene mutations have been identified since 1993, and research continues to look for further genes linked to MND. The majority of cases, around 90 to 95 per cent, are sporadic.
Treatment#
MND is still incurable, but it is not untreatable, as many symptoms can be managed. The drug riluzole has been shown in clinical trials to prolong survival by several months and may help people remain in the milder phase of the disease for longer.
Research has shown that people live better and longer under the care of a multidisciplinary team. Interventions such as assistance with nutritional intake and breathing improve quality of life.
Costly and unproven therapies are sometimes recommended by well-meaning people. Always seek professional advice before trying unproven therapies.
Impact on carers#
As MND progresses, a person’s physical condition can change rapidly and they will need increasing assistance from a carer. Over time, both the carer and the person living with MND will need increasing levels of support, both physically and emotionally. Carers can seek support to help them in their role.
Support services#
Support services can help connect people to the care they need, such as speech pathology, occupational therapy, physiotherapy, attendant care and nursing volunteer programs. Some services also offer home visits and assessment of the needs of people living with MND, along with equipment loan services or referral to other agencies for equipment. Support and information may be available by telephone, email, in person, in print and online.
Key points#
- MND is a rapidly progressing neurological disease, also known as ALS or Lou Gehrig’s disease.
- It usually begins with muscle weakness and progresses at different rates in different people.
- Up to half of people with MND can experience changes in cognition, language, behaviour or personality.
- MND is incurable but not untreatable; many symptoms can be managed, and the drug riluzole may prolong survival.
- People live better and longer under the care of a multidisciplinary team.
Where to get help#
Sources & further reading
For evidence-based global guidance on this topic, consult authoritative public-health bodies such as the World Health Organization (WHO), CDC, NHS, and ECDC.