The Ice Bucket Challenge
If you have been on Facebook over the last few weeks you would probably be familiar with the “ice bucket challenge.” It has gone viral and has made its way to many corners of the globe. Basically the idea is that people are nominated to tip a bucket of ice and cold water over their head within a 24 hour period and then they must nominate 3 friends to continue the challenge. The original idea was that you do the ice bucket task and if you don’t want to do it or you can’t you must donate $100 to the ALS charity. However the whole concept has grown and spread with many people opting to do both; cover themselves with icy cold water and donate to charity which is great. Many high profile celebrities, politicians and public figures have taken up the challenge which just adds to the momentum and popularity of it all.
But what is ALS?
ALS or Amyotrophic Lateral Sclerosis, is the American name for a particular strain of a disease which in Australia is called MND or Motor Neurone Disease. Motor Neurone Disease has no known reason or cause. It seemingly strikes randomly and is absolutely devastating. It involves degeneration of the motor neurons so that gradually (or often not so gradually) the muscles are wasted away, the body stops working, the patient loses weight and eventually they will die. I am sorry to say that but it’s true. There is no cure. Towards the end people suffering with this disease find it impossible to eat, drink and even breathe, eventually the muscles around the lungs and heart stop working. However, while the body loses all functional capability, the brain is fine the entire time so the person suffering is lucid and aware of what is going on, even if they can’t speak or move towards the end.
The ice bucket challenge is raising awareness of this terrible disease and it is raising money, which is great for research and development. We need to find the cause of motor neuron disease and we need to find a cure. To date the ice bucket challenge has made $80 million for the ALS foundation and the MND foundation in Australia has had over $500,000 donated. Let’s hope that it will fund a lot of research into somehow finding out more about this crippling disease of which there is really so little known about.
This is an issue that is close to my heart and close to my family’s heart. 14 years ago, my uncle, Phil Wearne, was diagnosed with this terrible disease. Phil is my mum’s brother and at the time of diagnosis he had two children aged 11 and 9 and was married. Our family was devastated. At first the signs were small, he would drop things and he had a weakness in his hands. But as the disease took over the symptoms got a lot worse. My Aunt Shirley, his wife, with help from a few other members of the family nursed him and looked after him. He passed away 2 years later in 2002, at the age of 52. My cousins, Phoebe and Andre, were 13 and 11.
It was the year I turned 23 when my uncle passed away, I was heading off to live and work in London for a year and I can remember saying goodbye. He was thin and frail and he was finding it difficult to walk. He still had twinkly, cheeky eyes though; I’ll always remember those eyes. I hugged him goodbye and told him he better be there when I got home. He smiled and hugged me back. That was the last time I saw him.
I wish I could see him again now, even just for an hour. I would love to talk to him as an adult. A proper adult, not a 23 year old flitting off to see the world.
I would tell him that my aunt and cousins, his wife and children, are doing great. That they are all doing wonderful things with their lives and that he would be very proud.
I would tell him that the papers he worked at as a journalist for so many years are still going but the world is a lot more online these days.
I would tell him that the world has changed a lot in the last 12 years. That we all carry phones on us now that can get the internet and act as a complete computer in our pockets or handbags.
I would love to ask him some questions too….
About his work and about journalism.
About his travels, especially India which apparently had a deep and profound effect on him in his youth.
I would like to ask him how he felt when he was really sick.
I would like to ask him if he was scared.
But I can’t, because he was robbed. Taken way too young and taken in the most tragic of circumstances.
MND is difficult, heart wrenching and truly a terrible sentence. The person who was once so alive and so strong becomes a shell of themselves, it takes their dignity, it takes their strength and it takes their independence.
So, to those people saying the ice bucket challenge is stupid and a waste of water, to those saying that a viral internet challenge has no bearing or direct link to the actual disease, well, just know that this horrific disease has no cure and there is very little actually known about it. Any awareness and any donations that this challenge can bring about can only be a good thing.
The quicker they stop people being robbed of life the better.
Below is a link of myself doing the ice bucket challenge, please excuse my husband, the helper, as he had undergone hand surgery a few days before. I like to think of it as adding suspense to my video.
We donated $200 to MND Australia in memory of Phil Wearne.
I have also included a link to a few videos by celebrities below that you can check out.
If you can spare any money, the link to donate to the Australian MND society is below. Please support local.
My ice bucket challenge
Reese Witherspoon dedicates her ice bucket challenge to a friend
Kylie Minogue and some big muscly guy.
And just because I think we all need a laugh, an Irish guy enlists the help of his Mum to do the ice bucket challenge.
A decision he may have regretted.
Has your life been touched by MND?
Have you completed the ice bucket challenge?