Saturday, August 23, 2014

About the ALS Ice Bucket Challenge and why I think it is a great idea

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There has been a lot of controversy regarding the Ice Bucket mania that has gripped the nation. One can understand why the thought of celebs pouring ice cold slush over themselves comes across as ridiculous and attention grabbing. And as outlandish as one may be tempted to think it is, I believe that this is an AWESOME way to raise money for ALS and it's victims.

I run another blog that has so far been devoted solely to ALS research and it's impact upon the victims and their families, and ways to help these people go through an extremely stressful condition.

We have ways to buy time, scope for remission, and cures for other conditions. There is none of this yet for
ALS. Right from the time that Lou Gehrig and this condition became synonymous, there has been research in many parts of the world. Awareness is not as it should be either. We have pink ribbons for breast cancer awareness and research, a Run for MS, and others where victims can more often than not participate and hope for recovery. In the blog that I update, I advertise the ALS Walk where ALS sufferers are part of the participating population. Every year, one can see them get weaker, use more assistive devices and walk less, until they are spectators and one day, they are not part of anything on this earth anymore.

And no one has a concrete idea as to why this happens. There are theories, and there is much research. But no proper idea, and no potential for a cure yet.

It meant as much to me as it does to many of you; a vaguely disturbing, sad condition that one pushes to the corner, much like we attempt to ignore news about poverty, massacres etc. Simply because there isn't a whole lot one can do to change things, and because we would be bogged down with helpless sadness if we thought of these things all the time.

pic credit - prakorn, freedigitalphotos.net




Then I met Linda. Linda who was so full of vitality, and bursting with ideas and projects. She had raised two daughters and had traveled the world. She and her husband, Him and I and others were were all on the same project in Panama, and we met during a Christmas party. After a couple of meetings, she told a group of ladies about her twin sister, Laurie, who had passed away from ALS. The profound sadness in her face is something that will take me a long time to forget. Laurie had been as Linda was now. Vital, alive and adventurous. She had been a wife, mother, and do-er of all things. A mild weakness that she noticed in her legs had been no cause for concern. She attributed it to her rather active lifestyle and continued to train and strengthen her body. When the weakness progressed, and subsequent tests revealed the devastating ALS diagnosis, she and her husband attempted researching every possible outlet. Every potential cure, and research study. She even participated in one. Unfortunately her condition progressed rapidly and she passed away in 2006. Her story can be found HERE.

Linda has been tireless in her efforts to talk about ALS, raise funds for those suffering from ALS, called PALS. She has shared ways to help families affected by this on the reachforacure blog. Ways to help, in addition to spreading the word, and controversial or not, joining in the ice-bucket challenge, can be found HERE. While individuals suffering from this have their lives taken over in ways that they could not have imagined, their families suffer enormously. Given that the condition causes people to lose any control and strength in their bodies, the constant caretaking wears caregivers down. The financial impact is also enormous. Whether it is the primary bread winner, or a grown child, there is a constant need of supplies and doctor's visits. I can't imagine the impact of watching a loved one degenerate before your eyes, knowing that there is nothing one can do, but make them comfortable for the days that they have left. And this is right from the beginning, from the time of diagnosis. Not a single hope except that the disease might keep the loved one communicating for as long as possible.

There is much more to this than everyone trying a new trick on themselves. I don't believe that I've seen ALS get as much exposure before and it's great, and it's important, and it is necessary for us to know why this happens so that we can put a stop to it, or change things to make them better. Right now, no one knows for sure. They're just about finding the information in genes. But what causes the progression, why some get it (Linda's ever torturous question to herself and us - why did Laurie get it and not her?), and could it be environmental?

If you're not up to ice bucket challenges, and would like to help, perhaps the many ways outlined by Linda might offer you some insight, HERE. If you're able to provide help monetarily, Linda's Walk Page can be found HERE and the ALS association's donation page can be found HERE.

There is so much more to all this than a macho dunk in ice. I truly hope researchers find answers and stop ALS's ravaging effects on individuals and their families.