The disease behind the Ice Bucket Challenge

Over the last few weeks, your social media feeds have probably been flooded with videos like the one above, of friends, colleagues and celebs drenching themselves in ice water and challenging others to do so, too. So what's it all about?
No, it's no new health fad, they're participating in the Ice Bucket Challenge, a viral campaign to raise awareness and funds for ALS. Here in Australia, ALS (or amyotrophic lateral sclerosis) is known as motor neurone disease (MND). Also known as Lou Gehrig's Disease in America, (after the baseball legend was diagnosed in 1939), approximately 1900 people in Australia are living with the disease and every day, two people are diagnosed with MND.Motor neurone disease is the name given to a group of diseases in which the nerve cells (neurones) controlling the muscles that enable us to move, speak, breathe and swallow undergo degeneration and die. The diseases in this group can be categorised by four main types: amyotrophic lateral sclerosis (ALS), progressive bulbar palsy (PBP), progressive muscular atrophy (PMA) and primary lateral sclerosis (PLS).
With no nerves to activate them, muscles gradually weaken and waste - this then affects a person’s ability to walk, speak, swallow and breathe. As these motor neurones degenerate, the brain is unable to control muscle movements, most often leading to paralysis and eventually death. According to MND Australia, the average life expectancy is 27 months from diagnosis, but survival rates can vary significantly. Two people die every day in Australia from MND.
Initial symptoms are mild and generally reveal themselves with a loss of muscle function in the hands or feet. The diagnosis is confirmed with blood tests and neurological exams. Most people with MND retain all senses (sight, hearing, taste, smell, touch) their intellect and memory but approximately one in five people with motor neurone disease may experience cognitive changes also.
The disease can happen to anyone and is only inherited in about 5 - 10 per cent of cases. While it's about 20 per cent more common in men than in women, the disease appears to be mostly random. Unfortunately, this is an illness that usually progresses quickly.
However, about 20 per cent of patients live five years or more, while 10 per cent will survive more than 10 years and five percent will live 20 years, according to the American ALS Association. But one thing to keep in mind is that the progression of MND seems to differ from person to person.
There is currently no cure for MND, but there is one PBS-listed drug called riluzole that has been shown to modestly slow the progression of it. According to MND Australia, riluzole does not cure MND but for people with the most common forms of MND it probably prolongs median survival by two to three months (median is the mid-point – half those taking riluzole have survival prolonged by more than two to three months).