WALK MS CHAMPION - NICK CUCCI & FAMILY

Nick Cucci is the captain of team Forza at the Northwest Suburbs – Palatine Walk MS.

Q: When did you first notice symptoms and how did the MS diagnosis initially affect you?

Nick: A few years ago we noticed something was wrong. My dad would occasionally have a hard time walking, a hard time getting out of bed. He was leaning on anything he could to get a quick rest.

Joanne: In 2010, he was hospitalized for what the doctors originally thought was a heart attack. After doing some testing and learning about the troubles he had been having, they confirmed that it was multiple sclerosis.

Gina: This was during my senior year of college, and when I left for school that year nothing seemed to be wrong. When my family came to help me move out I noticed that my dad couldn’t really help, he wasn’t as strong as he used to be, he was getting tired pretty quickly. So I saw the sum of the small changes all at once, and it was really a shock.

Joanne: After being in the hospital, things really started to progress more quickly. A few months after the diagnosis he was having a fall nearly every day.

Pat: I had a fall at work, and banged myself up pretty badly. That’s when we knew this might be pretty tough.

Q: How did you adapt to your role as caregivers?

Joanne: Well, the biggest problem was the house – it wasn’t handicap accessible. After one particularly bad fall, Pat ended up in a rehab center for almost two months, and this gave Nick and I our much-needed chance to update everything. We installed a chairlift, we bought grab bars for the shower, we put down new carpet – we really fixed up everything we could think of.

Nick: Yeah, it was a bit of a baptism by fire. My dad used to be the guy who fixed things, but it turns out that it was my time to learn.

Pat: Nick had just finished grad school and was moving on with his life, but he decided to live at home with his mom and I to help out. I can’t even begin to say how grateful I am for what he, and everyone else, has done.

Gina: I live out on the east coast, but I come home pretty often now because I can see that this is even more than a full-time job for Nick and my mom and I want to help them out. When I come back, it’s to be a caregiver. I don’t go out and about - I want to be here taking care of my dad.

Nick: One thing I’ve learned is that you don’t realize how much work goes into being a caregiver until you actually experience it. I have to give major props to my mom for that, because in the beginning it was her who was taking care of my dad all the time. With Gina living away, and me gone nine, ten hours a day at work, the whole burden was on her shoulders, and she handled it incredibly well.

Q: What does being a caregiver mean to you?

Gina: For me, it’s been about developing an appreciation for the little things that we tend to take for granted. Tying my dad’s shoes, cutting his hair – he can’t go out to get a haircut anymore, because most places aren’t accessible. We’re always glad to help him with these, but I’m thankful every day for the small things I can do without even thinking.

Q: When did you decide to get involved with Walk MS?

Joanne: We joined our neighbor Meghan Melone’s team in 2011. Her mom came over a few days before the Walk and asked us if we’d like to drop by for it. We gladly said yes, but we had no idea what it was all about. In fact, I only wrote a check for their team – I didn’t know about all of the fundraising. So we’re there, and my friend asks why we don’t have our own team and I thought, why not? This could be a great thing for us. So I asked Nick for help because he’s got the social media and marketing skills, and my friend was in charge of getting team shirts, and that’s how we started.

Pat: Nick put a lot of time into starting up our Walk team, and he actually came up with the name - Team Forza. You know what that means? It’s Italian for “strength.”

Nick: My dad is a pretty quiet person about the diagnosis – he doesn’t want to steal the limelight or make it all about himself. He didn’t want his name as part of the team’s name, so we had a brainstorming session to come up with something meaningful. I suggested Forza, and it instantly stuck. It was very fitting – we thought about the attributes that someone with MS needs to stay motivated, and it fit perfectly.

Joanne: The name works really well because it’s not just about Pat, it’s about the team as a whole. Nick has a friend whose mother has MS, and she walks with us. Pat worked with a guy who has MS, so he walks with us. It’s a team effort, it’s about our team’s strength.

Nick: Our first year was 2012, and we had maybe 30 walkers and raised about $9,000. This past year we had around 75 walkers and raised more than $15,000. We had a ton of extra t-shirts and gave them all away, so I’d say it was even closer to a hundred people that came out that day. I wouldn’t be surprised if it keeps getting bigger every year.

Q: What are your strategies for fundraising?

Nick: We start pretty simply each year, just asking friends, family, co-workers to make a donation. This seems like it’s a hard thing to do, asking people for money. But we realized, what’s the worst they can do, say no? It can’t hurt to ask. And it’s amazing how many people are so eager to help out. I put together a huge campaign for my office, and everyone was getting involved – they all wanted those paper footsteps you get for donating. We put those in the front entrance of our building so everyone would see them, and even if they weren’t donating we were getting the word out there, raising awareness.

Joanne: We also did some fundraising at the event itself.

Nick: We wanted to keep people at the event even after the physical walk was done, and we knew we wanted to incorporate hockey – it’s one of my dad’s favorite things. So we borrowed some hockey gear from a local rink, we got some merchandise and autographed items donated by the Chicago Wolves and a few other places, and we used this to set up a little hockey puck shooting gallery and silent auction by our team tent. We called it Shoot Forza Cure, and it turned out that people loved it! People from all teams stopped by to donate, take a few shots, and bid on a prize.

Q: What are your fears related to the MS diagnosis?

Gina: We’ve learned that people can have a hard time understanding MS. Sometimes it’s hard to find support because it’s not always an outwardly visible disease. Things can seem fine one day, then be rough the next, then be somewhere in between.

Nick: Yeah, a lot of other diseases are slides, and MS is a rollercoaster. You never know what you’re going to get, and this unknown can be very scary.

Pat: I used to be very active. I used to teach at the hockey school, coach the teams, and now I’m afraid that I’ll never put skates on again.

Nick: We actually sat down with my dad and had him write down his top ten goals of what he still wants to do, and that’s the first one – playing hockey again. He’s scared that he might have to give up such a huge part of his life forever. But we’re doing our best to make sure that’s not the case – we’re not giving up hope.

Pat: You can’t give up, and I never will. As bad as it might be, we all still have things to be thankful for, and that’s what keeps us going.

Q: What is one of your favorite memories from Walk MS?

Nick: My coolest Walk moment came from our Shoot Forza Cure. At the end of the day, my dad stood up off his scooter, grabbed a stick, and took some shots at me for a good three, four minutes. It was incredible to see how excited he was, doing something he loves so much. I think that would be hard for us to beat.

Joanne: And of course, Pat scored them all.

Q: Why do you walk?

Nick: It really means a lot to those who are diagnosed, and we want to support them, provide a caring community. We want to remind them that they’re not alone.

Joanne: It all comes back to the idea of forza, finding strength everywhere that we can. Seeing all the people that come out to support us at Walk, everyone who donates to the cause – with them, we’ll always be strong.