By now, some of us must (living under a rock dependent) have seen some of the ice –bucket challenges that has taken an almost Armageddon-like approach by means of unleashing onto the internet. Water splashes, cold bodies, people of all walks of life, whipping out some video montage of their nomination, followed by some splurge of ice water thrown over them by a significant other. Such a strange world we stay in. This, however, is all for a notable cause, as the ice splash is only but the “guilt free scape goat” that comes with a pool so deep that one would require an stupendous amount of ice-water to really know the true depth of Amyotrophic lateral sclerosis (ALS).
Amyotrophic lateral sclerosis (ALS), often referred to as “Lou Gehrig’s Disease,” is a progressive degenerative disease that affects nerve cells in the brain and the spinal cord (ALS Association , 2014). This, falls within a group of degenerative conditions that in essence, affect motor function of the body, ultimately and inevitably leading to complete dysfunction and loss in muscular control, including speech, swallowing and breathing. I’ve had the experience of managing and befriending a patient whom had been diagnosed with Multiple Sclerosis (MS), though physiologically different to ALS, the eventual outcomes are relatively similar. This, had been one of the most frustrating things I’ve ever had to come to terms with, as every single time I had seen my patient, I knew he was worse off than before.
When dealing with chronic destructive disease such as MS, it’s said that we as physiotherapists should “maintain” an individual’s functional ability. At first, it was something I had thought to work, sitting in class, learning about just how good it is to “maintain’’, though when it came to actually experiencing this first hand, seeing what a condition such as MS is capable of, I felt like a small fish in a very.. Very big pond. Coming in at week one, walking to having to be wheeled in by week five, I had witnessed the progression of something so rapidly, I had couldn’t comprehend what it must have been like for my new friend, who by the way was all but between the age of 32-34. I have heard countless of times, that the worst possible feeling is to stand aside and feel useless, that there’s nothing you can do, irrespective of how hard you try to “maintain”.
Seeing these ice bucket challenges has me stuck between a rock and a hard place. On the one hand, it has raised more than $80million, all for the nobility of people suffering with ALS (Worland, 2014), to which I think is an admiral gesture to something that has been under wraps for far too long. On the contrary, a recent survey revealed that 53 per cent of people who did complete the challenge did not know what cause it was supporting (SAUL, 2014). Though I have admirable respect for the amount of effort and exposure a deadly condition has gotten over the past months, I can’t help but to think how much more conditions there are out there like these, needing exposure, and more importantly how much longer will it take till people begin realizing it.
I’ve not taken part in the challenge, though I can tell you first-hand about my experiences about it. Some may see this as pointless, no money involved, but where were you when these conditions were something kept under covers?
Attached are a few links showing similarities between ALS & MS as well as some ice bucket videos because you know… “Guilt free scape goat”…
http://www.healthline.com/health/multiple-sclerosis/ms-vs-als#Similarities4
References
ALS Association . (2014, October). What is ALS. Retrieved from http://www.alsa.org: http://www.alsa.org/about-als/what-is-als.html
SAUL, H. (2014, August 28). /als-ice-bucket-challenge-over-half-of-brits-polled-did-not-donate-to-charity-afterwards. Retrieved from http://www.independent.co.uk: http://www.independent.co.uk/news/uk/home-news/als-ice-bucket-challenge-over-half-of-brits-polled-did-not-donate-to-charity-afterwards-9696690.html
Worland, J. (2014, August 26). ALS Ice Bucket Challenge . Retrieved from http://time.com: http://time.com/3173833/als-ice-bucket-challenge-fundraising-total/
ItsUmr09 
Hi Um’r. Thanks for the post and for pointing out a few of the issues with the ice bucket challenge. Two of the other concerns that have been raised is that few people seem to understand that pouring cold water on yourself is the least important part. Donating money is the bit that most people aren’t aware of. The other concern is that a lot of the money that is donated doesn’t go directly to either research of ALS or towards patients themselves. A lot of the donations go towards running the foundations and organisations that support the patients. These aren’t necessarily ethical issues (although they might be) but they do raise questions about how helpful the ice bucket challenge really is. It might make us feel better about ourselves, but does it really make a difference. Here’s an interesting infographic that highlights the issue that you point out i.e. that there are many other conditions that are under-represented in terms of awareness and support, and that many of those causes are more likely to benefit from our donations: http://thehigherlearning.com/2014/08/27/where-we-donate-our-money-vs-what-actually-kills-us-infographic/.