The ALS Ice Bucket Challenge has given the ALS Association $113.3 million donations, as of September 2014.
To most people, it's a dare that they are afraid of turning down. But for USC Economics professor Stephen Finger, the ALS Ice Bucket Challenge is so much more than a silly trend — it's one of the reasons he's able to keep living his life.
When Finger was diagnosed in February 2013, he never expected to hear that he had ALS.
“For about a year before that, I had noticed my hands and arms getting weaker and not working normally,” Finger said. “For most of that time, I attributed it to just not getting enough rest and then, as it got progressively worse, something like carpal tunnel.”
When Finger first noticed something was wrong, he saw an orthopedist. He was sent to a neurologist next, who then referred him to a specialist at Duke University.
It took several months for him to receive a final diagnosis, which is actually fairly quick. Since there is no test specifically for ALS, many spend a year in the diagnosis process. ALS is diagnosed by elimination, so doctors will rule out all other possible options.
Although Finger said he was fortunate for his quick diagnosis process, it didn't make hearing the news any easier.
“My wife and I have a couple of small kids, so to go from thinking I had carpal tunnel to being told I had a disease where the life expectancy is two to five years with no treatments was just crushingly hard to hear,” Finger said.
“I think whenever you’re really hit with news of this magnitude … you wonder how you can go on,” Finger said. “For us, I think we recognized that my progression was very uncertain … you’re in the best shape you’re going to be in, so if you don’t enjoy the present now how can you expect to deal with the future?”
“It’s a choice. Do you want to live and be happy and enjoy everything else going on in your life or do you want to dwell on the horror of the disease?” Finger said. “And we decided that we want to continue living our lives.”
“My children only know to be happy and to laugh and to play, and so I think in a short-term perspective that makes living with it easier because they’re not thinking about the future, they’re just thinking about doing what’s most fun in the moment,” Finger said.
Through this experience, Finger has realized how many special people he has in his life. Of course, he has his immediate family — his wife was with him throughout the entire diagnosis process. Experiencing this with her has reassured Finger that he decided to spend the rest of his life with the right person.
But he also discovered many other circles of support, such as friends and other family members who have made it clear to Finger that they are willing to do whatever they can do to help.
The Internet and social media have helped him find a support group of other people who are going through the same situation. Even though ALS is classified as a rare disease, Finger quickly made connections with many other ALS patients.
He even found that he has a lot in common with several of these patients. He got in contact with an economics professor at the University of Michigan. He even met a man he could have played soccer with had he chosen a different college.
“You quickly see these people and you see how they continue to live their lives,” Finger said. “It makes it more reassuring that we are approaching it the right way and doing everything we can do to continue our lives.”
Through the Internet, Finger has discovered a network of role models of other individuals who have also been diagnosed. He is inspired by what these other patients do to continue leading normal lives and to make the most of every day.
Social media has helped in more ways than one — the ALS Ice Bucket Challenge started appearing on Finger's Facebook newsfeed towards the end of July. Although he says some people may see it as a "silly thing," Finger sees it as a source of hope.
"I think for everyone in the ALS community, it’s been one of the most hopeful and meaningful things that has ever happened,” Finger said. “Now we have millions and millions of people doing something in support of the disease, talking about the disease, contributing to research organizations, trying to make a difference.”
Finger realized the amount of support his friends and family could give him when he was first diagnosed, but now he has even more supporters. Celebrities, athletes and business people have all made significant ALS donations, and Finger now views them as part of his support group.
“This has just expanded that net to the nth degree,” Finger said. “You see how many people who are doing it within their circles. You recognize those people are also doing that to support my family’s journey.”
He is also impressed by the number of people who are aware of ALS and are willing to donate to the disease. Finger had no idea what ALS was when he was first diagnosed, and he is enthusiastic about the number of people who now know about a disease that they had never heard of before the Ice Bucket Challenge.
“I didn’t know what this disease was a year and a half ago. I had no idea there were diseases out there where you could diagnose them and say ‘good luck,’” Finger said. “I didn’t know there were diseases in 2014 where modern medicine didn’t have any treatments or potential cures.”
ALS is not only an incurable disease, but it is also an underfunded disease. Finger and other members of the ALS community are looking forward to seeing the money fund research that will hopefully provide treatments that slow the disease and eventually even find a cure.
“It gives people a sense of hope that there will be the funding necessary to change the course of the disease,” Finger said. “This has been monumental.”