Motor Neurone Disease (MND) / Amyotrophic Lateral Sclerosis (ALS)

Motor Neurone Disease (MND), known as Amyotrophic Lateral Sclerosis (ALS) in many countries, is a progressive neurological condition that affects the nerves responsible for sending messages from the brain to the muscles. Over time, this can influence movement, mobility, speech, swallowing, and breathing.

MND/ALS affects everyone differently. With the right support, understanding, and inclusive environments, many people continue to work, maintain relationships, and participate in daily life. Experiences vary widely and may change over time.

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MND/ALS can be non-apparent

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What is Motor Neurone Disease (MND) / Amyotrophic Lateral Sclerosis (ALS)?

Motor Neurone Disease (MND), also known as Amyotrophic Lateral Sclerosis (ALS) in many countries, is a neurological condition that affects motor neurones — the nerve cells responsible for controlling voluntary muscles.

As these nerves become damaged, everyday activities such as walking, speaking, eating, using hands, or breathing can require additional support or adaptations.

Experiences are different for everyone. Many of the challenges people face are linked not only to physical changes, but also to environments, systems, and attitudes that are not always inclusive or accessible.

What causes MND/ALS?

There is no single known cause of MND/ALS. Research suggests it develops through a combination of factors, which may include:

• Genetic factors – around 5–10% of cases are inherited
• Age – most people are diagnosed later in life
• Environmental influences, which continue to be studied
• Complex biological processes affecting nerve cells

For most people, there is no clear explanation for why MND/ALS develops.

Types of MND/ALS

Several forms of MND/ALS have been identified. These include:

• Amyotrophic Lateral Sclerosis (ALS) – the most common form worldwide
• Progressive Bulbar Palsy (PBP) – often affects speech and swallowing first
• Progressive Muscular Atrophy (PMA) – often affects muscle strength and movement
• Primary Lateral Sclerosis (PLS) – usually progresses more slowly and affects movement

Experiences and progression vary considerably between individuals.

Common symptoms and signs

Experiences can vary and may change over time. They are often described in three areas:

Changes affecting movement and mobility:

• Muscle weakness
• Changes in walking or balance
• Difficulty using hands or gripping objects
• Muscle twitching or cramps

Changes affecting communication and eating:

• Changes in speech or voice
• Difficulties swallowing
• Increased effort required for communication

Other experiences:

• Fatigue or reduced stamina
• Breathlessness
• Changes in emotional expression
• Changes in daily routines and independence

Not everyone will experience all of these, and they may present differently for each person.

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Important note

This information is intended for awareness and education only. It is not a diagnostic tool and should not be used to identify or diagnose any condition. If you have concerns, please seek advice from a qualified healthcare professional.

Sources

World Health Organization (WHO): https://www.who.int/

International Alliance of ALS/MND Associations: https://www.als-mnd.org/

ALS Association: https://www.als.org/

Motor Neurone Disease Association: https://www.mndassociation.org/

National Institute of Neurological Disorders and Stroke (NINDS): https://www.ninds.nih.gov/health-information/disorders/amyotrophic-lateral-sclerosis-als

ALS Society of Canada: https://als.ca/

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