ALS patients need hope, take the Ice Bucket Challenge

Roughly 35,040 people have been diagnosed and 35,040 people have died of Amyotrophic Lateral Sclerosis, aka ALS, aka Lou Gehrig’s disease since my husband was diagnosed with the monster in June 2010.

In that month, just over six years ago, we were told that my Bill had two to five years to live and that he would likely become “locked in” his body, unable to move, but feeling everything and knowing everything before his death. The majority of the 5,840 people who receive the same diagnosis each year in this country hear the same thing from their doctors in addition to “Get your affairs in order.”

ALS is a frightening, no hope disease that devastates every single person and family it touches.

Somehow my husband has beat the odds and is still kicking, though he cannot walk, talk, eat or generally move much but one arm. Somehow he continues to smile and have hope.

The ALS Ice Bucket Challenge that swept the nation two years ago gave him and thousands of others hope. The challenge raised over $220 million worldwide to be used for research for a cure and to support ALS families.

But, the challenge did more than that. The constant videos streaming endlessly on the internet via Facebook and other social media sites, plus on the evening news, gave people like my husband enormous hope and encouragement. It meant they had not been forgotten, that other people did care and showed it in an extreme way—by dumping buckets of ice water over their heads and then donating money, like no other time in the history of the disease.

Now, two years later, what happened?

Every year, without fail, there are Relays for Life for cancer awareness—as there should be— walks for this and walks for that, again as there should be.

According to the National Cancer Institute, by the end of 2016, an estimated 1,685,210 new cases of cancer will be diagnosed in this country alone and 595,690 people will die from the disease.

I get it, ALS is rare, not as many people get it or die from it as cancer. But, does that mean that the disease and the people affected by it are any less important?

I think not.

I implore you, please take the ice bucket challenge before month’s end. Video it, challenge others, post your videos on Facebook. Donate if you are able. But, know that simply taking the challenge will give so much hope to ALS patients and their families.

It matters.

Jan Murray is a staff writer for The Southeast Sun and Daleville Sun-Courier. The opinions of this writer are her own and not the opinion of the paper. She can be reached at (334) 393-2969 or by email at [email protected].