The Ice Bucket Challenge May Be Over, But The Results For ALS Profound: An Interview

ice-bucket

The founder of the ALS ice bucket challengePat Quinn, recently sat down with BroBible for an exclusive interview. One year ago, Quinn was diagnosed with the very severe ALS disease that not only affects his life, but thousands of other victims too. A relatively minor fraction of the US population has ALS, so it wasn’t until Quinn motivated the general public and high profile celebrities to dump buckets of ice-water over their heads that younger people became conscious about ALS more commonly known as, Lou Gehrig’s disease.

We met up for this interview at Rocky’s pizzeria in New York city where Quinn could have resembled any other middle-aged New Yorker that was out on their lunch break. He was clad in a nondescript, baby-blue t-shirt, and stalling time for me on his iPhone as he met me with a pleasant countenance when I had arrived.

When we formally introduced ourselves, Quinn immediately struck me as a very resourceful and polite person. He made his way over to the order-counter on his own strength where we then ordered our pizza and agreed to continue our conversation in the pizzeria’s dining room. I carried the pizza tray as he led us both, but I couldn’t help noticing his different symptoms throughout our lunch. I observed his subdued walk that was more like a limp and also the irregular form of his arms and shape of his fingers that he reasonably asked me to carry our food for.

Quinn preferably articulates his words in a soft pitch and it is very easy to listen and understand him. Eating his pizza, however, disguised itself as a challenge; his bites were meticulously steady, his breaths exhaustingly short, and his forehead randomly beading sweat down like he had the flu. Pat ultimately needed to stand up as his symptoms persisted, but more importantly he also managed to sustain his cool before telling me that his favorite sports teams are the NC Tar-Heels, The Knicks, and the Yankees.

What may be most remarkable about Pat Quinn’s story is that he founded the Ice Bucket Challenge, even thougb operating the computer presents another challenge. Quinn pointed to the fact that he’s an excellent ‘texter’ using his only thumbs, but that the same fingers he used to shoot hoops with are typically un-reliable to draft complete emails.

BroBible: How did you start getting your initial message out that this was cool?

It was all individuals on Facebook. We noticed a family in Pelham (NY) do it for ALS and within a few days we jumped on it.

I have a pretty big network. Between my friends and my family, we’ve been doing advocacy, awareness, and fundraising since this diagnosis. We’ve been building a stronger team, but now we still have a challenge and it’s been unbelievable the increase in Facebook likes and people following the webpage, it’s been unreal.”

What kind of doctor diagnosed you with the ALS disease? And explain the costs involved plus the treatment options that you have.

It’s a weird disease because they don’t know how you get it, or what to tell you to do to stop it. The only way to really get diagnosed is by ruling everything else out. My personal story took almost 2 years. I went to doctors locally and I went to doctors in Manhattan (NY). Eventually we went to John’s Hopkins in Baltimore and I was diagnosed there, March 8.

Medical expenses just keep building. I’m lucky I’m in New York where they have the best medicare and medicaid in the country, but it’s a tricky system to figure out. I’m lucky I have a lot of help, but people that don’t have my support system it could be a very difficult situation.

Treatment options are another shitty part of this whole thing because there is no treatment option. They offer a prescription that supposedly extends your life for 3-9 months. As a young, 31 year old man, who was strong just a few years ago, it’s not something I’m willing to accept as my end all that I’m going to live 3-9 more months. We’re trying to figure out something else.”

Do people spreading the awareness translate into helping you physically or does it make you more mentally confident? How does the support make you feel in general?

Nothing, at this point, will help me physically, but mentally it builds strength and internally your desire to fight increases when you see more people supporting your cause. Not only does it create awareness, but the more people that do the ice bucket challenge, the more people are donating too.

My hopes are that the more money that comes in, the more research will be done. I’m young and I don’t plan on losing my life in 2-5 years, so the goal is to keep the momentum going, or the challenge, to keep raising enough money where research can finally make a difference. “

Did you used to play sports? And personally, is there a considerable difference between how you’d compete back then versus now?

Yeah. Growing up I played everything: baseball, basketball, and soccer. Through high school I played basketball. Hoops was my passion. I wasn’t tall enough or good enough to play in college, but I was alright. In college, I played rugby. That was pretty cool too.

The last time I played ball was maybe early last year. Even, at that point, as I was getting weaker, my arms couldn’t control the ball or sustain what I was doing and I was losing my breath a lot easier, so stamina was an issue. ALS definitely took its toll pretty quickly. One thing is I can still walk and I stand, so it’s tough for people to see [the disease] unless they actually interact with me and make me use my arms. If you tried to get me out on a court, I would decline.“

Does ALS affect your ability to live a normal life, have fun, and work?

Yeah. I don’t work anymore and I try not to let it affect my social life, but it certainly does. I can’t do a lot of things like being active and I can’t play rec sports anymore and even if I go out I have to be seated properly. Everything is just about positioning and comfort levels because if I’m out for too long, then my neck starts to go and then if my neck droops that’s pretty much the end of the night.”

So you have to have someone with you wherever you go?

Pretty Much.

Is there anything that you’ve learned about yourself being able to set up this entire ALS ice bucket challenge and see it proliferate? What keeps you motivated on a daily basis?

I knew I was an alright person, but the amount of support that’s come out for me individually is great. It feels great. It means a lot to have the support I do and I don’t take that for granted, I really appreciate it. And I’m hoping with the support that I have we’re going to do some big things for change or maybe raise enough money to make a change for ALS.

I got married last month. My wife is my source of strength. When I’m down she can make me laugh, so I’m very active fighting. She keeps me going, she keeps me happy. I have a great family and friends. They don’t treat me differently, which keeps me on-point mentally and they’re still like let’s go out, let’s go to the game, let’s do this and they don’t care if they have to help me get dressed or hold my beer, or hot dog, They’re not going to let it defeat me, so why would I let it.”

How much money has the ALS Ice Bucket Challenge raised in total so far?

The last I heard from the ALS association is that they brought in almost over $107 million. In the same time frame last year, they made just about $2 million. I’m praying that the increase is used the right way preferably for research and again, difference makers. Throw that difference in there, and there should be a change.

Is there any advice you’d like to give to others that may not have the wealth of support that you have?

It’s a very very difficult disease that’s so individualistic. Some people lose their voice first, I’m losing my arms, and some people are wheel chair bound in less than 1 month. The number 1 thing I would say is that you have to stay positive. A positive mind frame will make you last a lot longer and I truly believe that. I have doctors that tell me that ‘you stay positive and you stay proactive.’ Don’t be reactive, be active in your fight. Don’t wait for someone else to help you. Go out there, raise money, be involved with doctors, meet people and tell people about your story. The awareness we created is going to go a long way and I believe that.

Joe Girardi invited you to the Yankee game last Saturday. Lou Gehrig was a Yankee and now you’re supporting the same cause that forced a hall of fame player retire prematurely several years ago. How does that all tie together for you?

Its been 75 years since Lou Gehrig gave his farewell speech and in the whole scheme of ALS, nothings really changed. It’s a fatal disease; so to have something like the ice bucket challenge finally create a name for ALS again is great.

Now that ALS has the ice bucket challenge, it’s created enough attention and awareness that somehow got me to Yankee Stadium, so I’ll take it. Like I always say, we just have to keep building on the momentum. I know the Yankees donated $100,000 to the association, but that wouldn’t have happened without the challenge.