This Man Lost His Mom To ALS; And He Wants You To Know What The Disease Is Really Like

08/18/2014 05:40 pm ET | Updated Aug 18, 2014

It seems just about everyone is taking the #ALSIceBucketChallenge this month -- from tech moguls, politicians, athletes and entertainers, to teachers, doctors and students.

But before you pick up that bucket of ice water and threaten to pour it over your head, one YouTuber wants you to take a pause and consider exactly why you’re doing this challenge and what it’s all for.

“I lost my mom to ALS and I thought instead of doing the ice bucket challenge, I’d talk a little bit about what it’s like to have ALS and to go through that,” YouTuber zboy2855 said in a video posted online Sunday. “I just wanted everyone who’s doing the [challenge] to know what you’re doing it for and what this disease really is like.”

The YouTuber, who said he donated money to the ALS Association instead of taking the challenge, went on to describe the progressive, debilitating symptoms of amyotrophic lateral sclerosis, also known as ALS or Lou Gehrig's disease.

“Imagine one day your legs stop working. You can feel them, but you can’t move them,” he says. “And then your hands and arms stop working, and now you can’t move at all, even though you can still feel everything. So, if you have an itch somewhere, too bad. You can’t scratch it. If your muscles get sore … too bad, you can’t do anything. You’re stuck, unless someone else helps move your body for you.”

The YouTuber goes on to describe what it’s like for people with ALS when they lose their ability to speak, eat and, eventually, breathe on their own. The disease is always fatal.

“Hopefully with enough research and enough attention, no one else will have to go through [what my mom went through],” the YouTuber says at the end of the video. “Hopefully we can stamp out ALS really soon.”

So far, the ice bucket challenge has helped raise more than $15 million for the ALS Association.

The organization has vowed to invest this money “prudently,” with the aim of helping people with ALS, as well as their families and their caregivers.

“Never before have we been in a better position to fuel our fight against this disease,” wrote Barbara J. Newhouse, the organization’s president, in a blog post Aug. 15. “Increased awareness and unprecedented financial support will enable us to think outside the box. We will be able to strategize about efforts in ways that previously would not have been possible.”

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