The latest thing to go viral on social media is the ice bucket challenge, where you post a video of yourself being drenched by a bucket of ice cold water. You also nominate someone else to complete the challenge and they have to complete it within 24 hours. While it may look like just another idiotic online stunt, like neknominate, this one has a much more serious purpose behind it as it part of campaign to raise funds and awareness about MND, Motor Neuron Disease (also called ALS or Amyotrophic lateral sclerosis).
It was started by philanthropist Corey Griffin in the United States, on discovering a friend had the disease. Tragically, Griffin himself died in a swimming accident only a few days ago. Locally, the profile of MND has been raised by former Antrim football captain Anto Finnegan who was diagnosed with MND in August 2012. This prompted the founding of deterMND, to raise funds and awareness about the condition.
The prognosis for those with MND is stark, with a typical life expectancy of 2-5 years. My friend, Niall Largey, was diagnosed with MND in 1994 at age 21. He defied the odds and bravely outwitted MND for an extraordinary 10 years until he passed away in July 2004. MND typically begins at your extremities, producing odd ticks in your hands or problems with your feet. It creeps in towards your core, with weaknesses and muscle wastage beginning to limit your capacity to perform normal tasks. As your body succumbs to the disease, it seems like the signals your brain sends to your body just no longer reach their destination. While there is no reduction in your consciousness or intellectual faculties, the physical systems they normally control simply fail you and more and more you rely on other people to help you carry out basic tasks and bodily functions. At some point, you cross the line where you need a nebuliser, a peg so that food reaches your stomach and other interventions. Suddenly your life is now simply being extended by medical assistance. All the while the person inside that failing physical body is slowly being locked in. An ever increasing need to clear their throat gives way to ever reducing clarity in their speech, and the effort of forcing the muscles and airways to articulate something intelligible will just become too much. Then the capacity to interact with those around them becomes an ever-shrinking horizon of non-verbal communication. Often, death finally comes once MND reaches, and overwhelms, a major organ.
The care environment needed for someone with MND includes modifications to bathing and toilet facilities, provision of suitable beds and medical equipment and a significant amount of medical assistance. And that is before any sort of practical or emotional support for their family. All of which, inevitably, costs money. Of course, some people are too cool for school and are already complaining about the childishness of the ice bucket challenge and chiding people to just make charitable donations quietly (like hipsters always do). Since part of the motivation behind this campaign was to raise awareness of MND, that criticism is simply unwarranted (and obviously counter-productive).
By now, a lot of famous faces are getting into the act. The ice bucket challenge has also been a way to renew, or maybe defuse, old rivalries, such as Brian O’Driscoll nominating former foe, Tana Umaga. Top marks, though, have to go to local boxing legend Paddy Barnes who has nominated Barry McGuigan, Jamie Bryson and Willie Frazer:
— Paddy Barnes (@paddyb_ireland) August 21, 2014