Out of all of these nominations I’d bet only half of the people knew what ALS actually stands for. Since the start of July, the ice bucket challenge has been the latest craze on the internet; everyone seems to have been nominated but does everyone actually know why they are doing it?
ALS, shortened from amyotrophic lateral sclerosis disease, is a progressive neurodegenerative disease or more simply, death of motor neurones between the brain, spinal cord and muscles. It is commonly known as Lou Gehrig’s disease after the Yankees baseball player. In the UK, it is known as motor neurone disease of which Stephen Hawking is a known sufferer (his family even participated in the challenge on his behalf). What are the implications then? In effect the brain loses its ability to control muscle movements; since the muscles aren’t receiving signals to function they atrophy (become thinner) and eventually become paralyzed as the motor neurons can’t regenerate.
After diagnosis of ALS, the life expectancy is 3 to 5 years as a result of respiratory failure.
The onset of ALS starts with muscle weakness and wasting followed by speech difficulties and breathing problems. Only those muscles that provide voluntary movements and power are affected so, for example, the muscles in the arms and legs that voluntary control actions like picking up a phone or taking a step. These are important muscles used for everyday activities; when their function becomes impaired quality of life can seriously reduce. Physical therapy thus plays a role in helping sufferers cope with their muscle loss with the aid of equipment like power wheelchairs and ventilators.
There is not yet a known cause for the disease although it is thought that there is some genetic links. The disease normally randomly strikes individuals who are in their 60’s. After diagnosis of ALS the life expectancy is 3 to 5 years as a result of respiratory failure but can go to 10 or more years if the symptoms stop progressing or even reverse. Despite there not being a cure for ALS an approved drug called Riluzole is used to slow the progression of ALS giving a sufferer a few more quality months to live.
So why are we throwing ice cold water over our heads (and risking pneumonia) as opposed to let’s say a ‘no make-up selfie’? The sensation of ice water over the body is said to be similar to the numbing effect experienced by those with ALS. In just over a month around $100 million has been donated to the American charity, ALS Association. So what do they plan on doing with all these donations? Alsa have said these funds won’t just be saved for ‘a rainy day’; they have pledged it will be spent on research to find the cause of ALS and develop effective treatments.
This really does show the power of social networking; through nominations and by getting celebrities involved awareness is spreading. Just because it is socially acceptable to carry on the craze doesn’t stop people donating without a nomination, just as it’s okay to donate without doing the challenge – text ICE to 70550.
So next time you see an ice bucket challenge remember it’s not just fun and games; there are people out there suffering with this life threatening disease and the main aim is to support the ALS charity – looking silly on video is just a plus.