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

aka "the beast"


What is MND/ALS?

Watch this video to have a general overview of what MND/ALS is.

Motor Neurone Disease (MND) is the name given to a group of diseases in which the nerve cells (neurones) that control muscles undergo degeneration and die. Amyotrophic Lateral Sclerosis (ALS), Progressive Muscular Atrophy (PMA), Progressive Bulbar Palsy (PBP) and Primary Lateral Sclerosis (PLS) are all subtypes of motor neurone disease. MND is the widely used generic term in the United Kingdom, Australia and parts of Europe, ALS is used more generically in the United States, Canada and South America. MND and ALS are commonly used to identify the same desease even if there are some differences.

The Amyotrophic Lateral Sclerosis - ALS - also known as Lou Gehrig's Disease and Charcot's disease, is a relentlessly progressive neurodegenerative disease which attacks motor neurons in the brain - Upper or First Motor Neuron - and in the spinal cord - Lower or Second Motor Neuron - resulting in the wasting away of muscle and loss of movement. The motor cells (neurones) control the muscles that enable us to move around, speak, breathe and swallow. With no nerves to activate them, muscles gradually weaken and waste. Symptoms may include muscle weakness and paralysis, as well as impaired speaking, swallowing and eventually breathing. Progress is generally rapid, with an average life expectancy of between 2 and 5 years from the onset of symptoms.

Approximately 90% of all MND/ALS cases are sporadic, meaning there is no known history of the disease in a family. The remaining 10% of cases are known as familial ALS. Though it can affect anyone, ALS/MND is more often found in the 40 to 70 year age group.

The disease affects each individual differently and can have a devastating impact on family, carers and friends. The rapidly progressive nature of the disease requires constant adaptation to increasing and changing levels of disability, which in turn require increased levels of support.

Living with MND/ALS is like living in a room with no doors nor windows. A diagnosis of MND/ALS is a kind of death sentence.

It feels like been buried alive.

We all deserve a system where the speed and urgency that have been seen in the fight against COVID-19 is the norm and not the exception!