By now, the Ice Bucket Challenge for ALS has become a full-blown phenomenon, attracting a smorgasbord of celebrities to lend their famous heads to the task and raising a whopping $15.6 million for the disease. While the summer-defining viral event is inarguably a good reason to act silly on camera, one challenge participant reminds us that it's not all fun and games. Instead of pouring ice water on his head, YouTube user zboy2855 described his mother's battle with ALS instead, highlighting the very serious disease at the core of the challenge.
After picking up steam on Facebook and attracting the likes of Justin Timberlake, Jimmy Fallon, New Jersey Gov. Chris Christie, and most recently Chris Pratt, the Ice Bucket Challenge has become the official activity of summer 2014. And with the good cause attached, everyone indulged in it guilt-free, but somewhere along the way the chuckle-inducing act itself moved to the foreground of the discussion while the disease that inspired the challenge got lost among the buzz.
Take a glimpse at the current headlines associated with the Ice Bucket Challenge and you'd think it had to do with some music or movie award show, not a neurodegenerative disease that affects 5,600 Americans each year.
Amyotrophic lateral sclerosis, also known as Lou Gehrig's Disease, progressively degenerates one's motor neurons until the brain is no longer able to control muscle movement. Patients start out with muscle weakness and could potentially end up totally paralyzed. ALS is a fatal disease, and the average life expectancy of patients is two to five years after diagnosis. Respiratory failure and cardiac problems stemming from the disease are common causes of death.
Amid all the celeb-induced hype, one man is taking on the challenge in a very different way. There's no bucket, no ice water, and no wincing involved. Instead of the usual routine, the man, who lost his mother to ALS, decided to make the disease the highlight of the challenge by talking about his mother's experience.
- "Imagine one day your legs stop working. . . . And then your hands and arms stop working, and now you can't move at all, even though you can feel everything. So if you have an itch somewhere, too bad — you can't scratch it. If your muscles get sore from sitting or lying in the same position for too long, it's too bad. You can't do anything, you're stuck."
- "After that you lose the ability to move your limbs, your speech starts to go, so you can't speak anymore. Your mind is still fully aware, you're as sharp as ever, but you can't scream, you can't call out, you can't communicate in any way."
- "Because your speech is gone and any movement you have left is minimal, a lot of people who don't know any better or understand what ALS is will think you have cognitive problems, so they'll speak to you loudly and slowly, like you're mentally impaired, which is just one more indignity."
- "Soon after your speech goes, you lose your ability to swallow, so no more food or drink. . . . Instead you get a surgically inserted feeding tube, where food isn't something you enjoy or savor anymore; it's just a liquid . . . for the sole purpose of sustenance."
- "So now you're basically trapped inside a rag doll. You can't move, you can't speak, you can't eat, but you're fully aware of everything. . . . That's pretty much how you stay until the last stage, when your body stops being able to breathe on its own. And then you have the choice of going on a ventilator . . . or letting your body naturally go into respiratory failure."
- "I just wanted everyone who's doing the Ice Bucket Challenge to know what you're doing it for, and what this disease really is like."
Watch the entire video below.