It’s the latest viral craze spiraling through your social media networks, but if you’re wondering why people are pouring ice water over their heads, you’re not alone.
When the Ice Bucket Challenge first started blowing up our social media feeds there was a little confusion as to what it was all about. By now, most people know the Ice Bucket Challenge is a digital campaign to raise funds and awareness for a neurodegenerative disease called Amyotrophic Lateral Sclerosis (ALS) — here in Australia, we know it as Motor Neurone Disease (MND).
But what is MND, exactly, and how does it affect those who are diagnosed with it?
“Motor Neurone Disease is a progressive neurological disease,” explains Motor Neurone Disease Queensland CEO Cheryl Miller, “which in layman terms means the messages to our muscles coming from both our brain and spinal cord which tell our muscles to work normally are interrupted. So people with MND have issues around all the muscles in the body. This then impacts on their ability to walk, talk, hold their head up, swallow and breathe.
“Muscle waste also involves their ability to speak and eat and drink. Huge weight loss and fatigue are also issues. The most common forms of MND have a life expectancy of two to five years; the average life span is approximately 27 months.
“So people diagnosed with MND become disabled by varying degrees throughout the disease process. From not being able to walk, stand independently or move around even in bed. Not being able to hold their heads up, not being able to hold a cup, hug their loved ones or even talk. They cannot wipe their tears or scratch their nose. The list of what they cannot do goes on.
“The ability to shower independently has gone. The ability to eat by themselves. The increased needs means loved ones care for people with MND at home or they end up being cared for in Aged Care Facilities. This is a very individual disease and each person arrives at the end of their road differently.”
Since the inaugural Ice Bucket Challenge in Australia two weeks ago, MND Australia has welcomed a fifteen-fold increase in donations compared to the same period last year. 10,000 new supporters have donated a total of $500,000 in the last fortnight.
“The Ice Bucket Challenge has had a huge impact for the amount of awareness it has created,” says Ms Miller. “It’s given many people with MND something to smile about. In their world, watching someone think about them, it has boosted their morale enormously. Funds to support people with this rare disease, which does not have a celebrity ambassador in Australia to catch everyone’s attention, have increased across the world.
“One day we hope to be a world free from MND. Many of the people with MND are very private about their disease and do not want to come out publicly because of the emotional toll it takes on them and their families. Others simply have lost their ability to talk.”
Whether or not you decide to throw a bucket of iced water over your head or not, you can still donate money to help improve the lives of people living with MND and their loved ones through research, advocacy and care.
Visit MND Queensland to find out exactly how public contributions are used, and to donate.