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.
Although MND is the widely used generic term in the United Kingdom, Australia, South Africa and parts of Europe, ALS is used more generically in the United States, Canada and South America.
Many South Africans were first made aware of the disease when former Springbok rugby player Joost van der Westhuizen announced in 2011 that he is suffering from MND. He has Amyotrophic Lateral Sclerosis, the same form as Deon. Joost actively campaigns for issues relating to MND through the J9 Foundation, a charity devoted to MND issues, and Deon has been blessed to be a beneficiary in the past.
MND is characterised by progressive degeneration of the motor nerve cells in the brain and spinal cord. 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 breathing. In most cases, it does not affect intellect, memory or the senses. Progress is relentless and generally rapid, with a life expectancy of between 2 and 5 years from the onset of symptoms.
Though it can affect anyone, MND is more often found in the 40 to 70 year age group.
Although classified as a rare disease based on its prevalence, MND in fact quite common. There are approximately 140,000 new cases diagnosed worldwide each year. That is 384 new cases every day!
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.
**information adapted from The International Alliance of ALS/MND Associations