While most people are done dumping buckets full of ice on their heads, in Yonkers, NY, Pat Quinn’s muscles continue to wilt. The 31-year-old creator of the Ice Bucket Challenge is grateful, and pretty stunned, that he helped raise $100 million for the ALS Association. But as the viral tide recedes, he hopes you won’t forget about the disease slowly decaying his body. Now that you’ve done the challenge and donated, this is what Quinn wants you to know about ALS, and why – even while enduring the debilitating disease – he won’t stop fighting.
Men’s Fitness: How were you diagnosed?
Pat Quinn: In my case, I’m very young compared to others that get diagnosed, so it was a long road. It took almost two years to get diagnosed. In that time frame they pretty much run you through the mill with blood work, MRIs, CT scans, and I had a muscle nerve biopsy on my forearm. Pretty much anything you could think of, they did.
I was going to special surgery in the city and I took a trip up to Johns Hopkins Hospital last March when I was diagnosed. They pretty much did every test they could in one day and when they tell you you’re diagnosed it was pretty much like, “All tests are pretty conclusive that you have ALS, let me get the nurse practitioner and she’ll tell you how to move forward.” It was like, “We really can’t do much, let me get the nurse so we can give you whatever advice we have.”
What were you feeling at the time?
It was tough in the beginning. Emotionally you’re all over the place. You don’t know what’s going to happen. The first thing you see when you go on the internet is your life expectancy goes from, “going to be an old man,” to being two to five years. So it’s not the easiest thing. Your mind wanders to the worst places. But after a couple of weeks we really regrouped and decided we’re not going to sit back and take this thing, and so we started to be as big of advocates as we could be.
You say ‘we.’ Who is in your support system?
I recently got married, so my wife, my brother, my mom, and my dad. My network is pretty strong. I’ve got a lot of close friends since grade school and high school that are right behind me this whole way. I just moved back to Yonkers so I could be closer to everyone and have more assistance because my daily living has gotten pretty difficult. My arms are very weak now so it’s tough, like little things, like eating, getting dressed. Stuff like that I really can’t do on my own – or it is very difficult – so the assistance is no longer something I appreciate, it’s something I need.
Cutting through the science jargon, what is ALS? What do you feel?
At this point, I guess I am lucky that my progression is slower than average. I’m not in a wheelchair, I’m still walking, I still talk. I lose my breath here and there but it’s not the worst thing. It’s a disease that has robbed people of the ability to speak or walk within six months. Within a year people are in wheelchairs. I’m over a year and I’m still doing what I can do. At this point I’ve lost a lot of muscle. I have a lot of atrophy in my upper back, my shoulder blades are pretty bare, my neck is very weak – I have to support my neck a lot of the time. If I’m home I’m always lying down or I’m using a pillow. My hands and my arms are very weak; picking up stuff is very difficult. Like I said eating is tough. It’s weird. It’s slowly taking my ability to do daily things. Now it’s all about figuring out new ways of doing it.
What is your mindset through all this?
Let’s figure out a new way. I can’t look down. We’re always looking forward. I feel like a positive attitude will help me sustain what I have, longer. We always stay positive. I mean it’s tough, you get emotionally down at times. But whatever we do, we do it to get right back on track with our goals of sustaining what I have, creating awareness, and doing what we can to support this cause.
After you created the Ice Bucket Challenge, when did it come full circle? What was the video you were most excited to see?
I mean, I’m a big basketball guy so I saw LeBron James doing it and I was like, “Wow, it’s reached the top level of all athletics.” It’s reached every actor or actress. It’s not just here, it’s worldwide now and it’s unreal how big it’s gotten.
What keeps you motivated? Why do you keep fighting?
I’m married. I have an amazing wife supporting me on a daily basis. I have a great family. I have a lot of people behind me that won’t let me settle for “hanging in there.” It’s more than just me now. When I’m dealing with ALS my family is dealing with it. It’s something that we are all involved with now. I may be the one losing the muscle, but they deal with it just as much, so it’s more of a group effort than just me right now.