What are the symptoms?

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For most people, the intellect, memory and senses of sight, hearing, taste touch and smell are not affected by Motor Neurone Disease.

Early symptoms are mild, and include stumbling due to weakness of the leg muscles, difficulty holding objects due to weakness of the hand muscles, slurring of speech or swallowing difficulties due to weakness of the tongue and throat muscles.

The progressiveness of the disease varies from person to person. Muscles weakened by MND do not recover, although. Eventually, severe disability develops and as the disease becomes more severe, people with MND are unable to eat, walk or talk and need a lot of care.

About 7 in 10 people with MND die within 3-5 years of the onset of symptoms. About 2 in 10 survive five years, and about 1 in 10 survives 10 years or more.

  • Also known as Lou Gehrig’s disease or amyotrophic lateral sclerosis (ALS) outside Australia
  • Third most common brain degenerative disease after Alzheimer’s and Parkinson’s diseases
  • Incidence (new cases per year) is 2/100,000 people
  • Prevalence (people living with MND) is 7/100,000 people = 350,000 people affected worldwide
  • Causes 100,000 deaths per year
  • 1,400 Australians living with MND
  • Causes 1 Australian death per day
  • Average age of onset is 58 years
  • 80% cases are fatal within 5 years of diagnosis
  • 70% cases have limb onset disease
  • 30% cases have bulbar (tongue) onset disease and associate with poor prognosis
  • No diagnostic marker at present
  • No cure at present
  • Only 1 prescribed drug available (Rilutek) to delay the progression of the disease
  • 90% of cases have no family history and no established cause
  • 10% of cases have family history and are hereditary (due to single gene defect passed on through generations)
  • 8 MND genes have been found to date
  • Caused by loss of nerve cells (neurones) in the brain and spinal cord that control muscles involved in movement, speech, swallowing and breathing
  • symptoms include progressive weakness, wasting and paralysis of muscles of the limbs, throat and tongue