Ice Buckets and Ballparks

Hey y'all, on this season of Mr. Stillman's Opus, I'm spending some time interviewing my clients here at Rosewood Wealth Management. Over the years I've had the chance to work with a lot of different people and a lot of them have really interesting stories to tell.

Maybe they have a really neat job, maybe they've accomplished something very impressive, or maybe they've just had things happen to them in life, good or bad, that make for interesting stories. Today I'm talking with Larry Falivina. Larry has ALS, which if you're not aware is a really terrible disease that in most cases destroys your body really quickly. Fortunately for Larry, his has progressed very slowly, but that doesn't mean that he hasn't experienced significant effects. Larry worked for Salesforce, but eventually the disease got to the point that it was best for him to retire from that job and go on disability. We talk about how he's dealt with the emotions that come along with a disease like this, the effects on his family, his wife Shana and his sons Quinn and Pearson who are 16 and 13.

We also talk about his nationwide tour last summer where he loaded up the family in an RV and went to a baseball game at every major league ballpark in the country. Larry is now a member of the Board of Trustees for the ALS Association and he just launched a new online TV show that you can find at NGBNSouthWake.tv. The show is called FYI, that's For Your Inspiration, where he'll be interviewing different people who have inspirational stories to share. If you'd like to donate to the ALS Association through Larry, he has a website set up where you can do that. It's ChallengeLarry.org.

It's not often that I say that a person is inspirational, but I do find Larry to be a very inspirational figure and hope that you'll be inspired by my conversation with him. So Larry, I guess the first question for you is what was the first indication you had that something was amiss? The first indication I had was way back in 2013. We were moving and my left arm was sore. I thought it was just, you know, from moving boxes and that kind of thing. But I was working out pretty regularly at the time and realized that my left arm was smaller than my right. That led me to my first visit to the doctor and the orthopedic doctor looked at me and said, yeah, that's not right.

That's kind of how it all started. Many doctor visits after that just trying to figure out what was going on. Yeah, it was how long before you were officially diagnosed from that point?

I was not officially diagnosed until August of 2017. So three years now. So the ice bucket challenge was happening while you're in the middle of trying to figure out what's going on, right? Correct. Was there at any point where you're seeing all this stuff happen on Facebook and people are getting ice buckets dumped on them to raise awareness about ALS that you said, huh, I wonder if that's what it is.

Well, I mean, my family, we dumped ice on our heads, you know, we were a part of that. And yeah, you know, those three letters, ALS had come up, but actually at that point, ALS had been ruled out because the progression was so slow and it was really just limited to my left arm at the time. Yeah. Well, I was going to say that was 2013 where you first noticed something.

Here we are in late summer of 2020. I mean, a lot of people get diagnosed and they're gone in a year or two. Yeah. I mean, uh, two to five years is kind of, you know, what you're looking at when you get this diagnosis. And that's the strange thing about this disease is that the journey is so different. And I think what they're finding out is that ALS is really sort of a spectrum of diseases that sort of present themselves in similar ways, uh, which unfortunately makes it even harder to figure out and find a treatment for.

Yeah. By the way, when did we stop calling it Lou Gehrig's disease and start calling ALS? Cause I'd never heard it called ALS until like 10 years ago. And now I never hear Lou Gehrig's disease. Right. I think it was probably about the time of, of the ice bucket challenge.

Um, and I think it's, you know, it's a general generational thing where you've got the generation who, you know, didn't grow up with Lou Gehrig and that story. Um, as a baseball fan, you know, that still resonates with me, but, uh, And we'll talk about your ballpark tour in a minute. Your attitude through all this has been amazing to me. Um, you've never shown any signs of self pity or, you know, wallowing and why me, but that's what I've seen. I know there have been days where you've had those feelings. So what have the, what have the tough days look like and how have you worked your way through that? I mean, the thing about ALS is you never know when the is the last time that you're going to do something.

Right. Um, I was, I was running quite a bit. Um, that's when I realized that what had started in my left arm was now spreading to the rest of my body. My time started getting slower. And you know, you don't know, um, when's the last time I'm going to be able to button my shirt or feed myself or, you know, whatever it is. So, um, you know, every day is not rainbows and kittens, right? So there have definitely been some down days.

I think for me, my faith and knowing that God is with me through all of this and believing that he has a purpose for all of this is what has helped me get through it. Have you been able to figure out what that purpose is at this point? Well, yeah, I mean, I've had the opportunity to, to do that baseball challenge. Like we talked about, I've got the opportunity now to do this, uh, you know, TV show. And I really think it's about, you know, helping people understand that, you know, even without an ALS diagnosis, right, you'd never know how much time you have on this earth.

So think about how you want to spend it. And, um, you know, hopefully my story and the other story that I'm sharing will help people just face whatever challenge they have in life because the reality is we're all facing something. Yeah. So let's talk about the TV show. It's called FYI for your inspiration.

How did that all come about and what will we be seeing on that? Well, it all came about really, uh, because of our journey last year, you know, visiting the ballparks and telling stories of other people who are dealing with ALS. And what I realized was that, you know, people really connected with these positive, inspirational stories, showing people who are facing difficult challenges, but who weren't letting it, you know, beat them in terms of their spirit and their attitude.

And I just wanted to keep telling those stories. And so the show, FYI, is about inspirational stories, not necessarily all ALS stories, but just stories of people who've faced a challenge in their life and faced it with a fantastic attitude and with positivity, because I think I know from experience that that kind of attitude helps you beat whatever you're facing. Yeah. What has the impact been like on your family? So with Shayna and the boys, how have they processed everything? What, how have you seen them step up through all this?

Yeah. You know, I'm blessed with two incredible boys, Quinn, who's 15, almost 16, Pearson, who's 13. And they have definitely stepped up in terms of picking up the slack for things that I can't do around the house anymore. I've seen just the maturity in them. And actually, it's given me a great chance to sort of connect with them and pass things on to them.

You know, household projects now involve me and them because there's things that I can't do. Right. So I've just, I've really enjoyed spending the extra time with them.

Especially, you know, when I went out on medical leave, you know, I'm the guy who takes them to school, and I'm the guy who, you know, just is able to spend more time with them. Yeah. So when you have this sort of clarification, sort of the way you described it, where it's like, all right, well, you know, if we're just living life, we don't think about the fact that we have a finite amount of time on this earth. But now that you still don't know what the finite amount of time is, but you can kind of assume that it's going to be less than the average person. What is that clarified for you?

What are the things where you say, all right, I want to be sure I do this? Right. I mean, it makes you think about the things that are important in life, relationships, giving back, connecting with people, and especially connecting with your family. And it's interesting, this pandemic, I think, has woken up a lot of people to that. And I wanted to make sure that I made memories with my family.

I wanted to make sure that I was living out my purpose and not just, you know, going through life because it's really easy to just get caught up in, you know, the things that you feel like you have to do, but that aren't necessarily the things that are important to living your best life. Yeah. So let's talk a little bit about the financial aspect of all this, which will then lead us into the ballpark tour that you were able to do. So, I mean, the importance in your case of having disability insurance in place was pretty huge.

It was huge. I mean, you know, thankfully Salesforce, my employer, gave us. This was just an employee benefit.

Yeah, this was just an employee benefit. And once I realized, you know, what was available and the fact that I wasn't really able to do my job anymore, you know, traveling by myself was not going to be possible. And traveling was a big part of my work and, you know, the fatigue level that comes with the disease.

I was at the point where I was going to have to change what I was doing. And so the disability insurance allowed me to spend the time with my family and again, focus on the things that are important. So between that employee benefit, you know, the private disability insurance plus social security disability, like you're not bringing in what you were before, but it's close enough that you can make things work, right? It was.

It is. You know, we did the math, you know, Shane and I sat down and did the math and realized that, you know, we can live on this and yes, our lifestyle will have to change. But again, it allows me to do the things that I felt were most important.

I'm blessed in that respect. You know, a lot of people with ALS wind up working longer than they really want to. And this disease becomes very expensive in terms of the home health care that you need, modifications you need to make to your house, paying for things that, you know, Medicare doesn't pay for. It's a very expensive disease. And so we were blessed to be able to be in the financial position that we are.

So one of the things that a lot of people say they want to do, it's sort of like a bucket list item, is they want to do a tour of all this nation's major league ballparks. Right. And you're the guy who actually did it. Well, this was last year, right? Last summer. When they were actually playing baseball with people in the stands.

With people in the stands, right. So how did that all come together? And just tell us about that journey. Yeah, so the, I mean, the idea really was we wanted to travel the country and meet with other people who had been affected by ALS and share their stories. Because I knew from meeting other people who were fighting this disease that they were fighters, right?

That they were doing this with great attitudes. I mean, this is a disease that essentially takes away everything from you physically. I mean, you get to the point where you can't move, you can't talk, you can't eat.

So it's a devastating disease. But just seeing the way people handled this and didn't let it beat them mentally and, you know, that fighting spirit that they had. I just wanted to share those stories. And you basically had somebody that you met up with at each ballpark that had ALS and kind of met them and talk through their story.

Correct, yeah. I would go to, you know, that particular city. We weren't able to do it, unfortunately, in every ballpark. But for the most part, I would meet up with someone who was a fan of the team. We would go to the game.

I'd get a chance to talk with them, share their stories, and put them out on social media. Yeah. So you started where? You loaded up the RV, got the boys in the RV. So they were what, like homeschooled for part of the year or how did that work?

That's correct. Yeah, they were homeschooled for part of the year. We bought an RV, jumped in it, and spent three months traveling around the country visiting all these ballparks. So it was a great chance to make some incredible memories with my family, as well as share the stories of these people, get the word out about ALS, try and raise some awareness.

And again, that's what eventually led to the FYI show. So as I recall, you finished with the Braves, right? You finished up in Atlanta. Where did you start and how did that route go around the country?

So I started in Florida and I started a little bit early without the family because the boys were still in school and hit the Marlins and the Rays. And then we worked our way up the East Coast, went across the top of the country, made sure that we dipped into Canada to catch Toronto, and then continued west down the West Coast and back to Atlanta, kind of a big circle around the country. And that was how many miles driven by the time it was all said and done? I think it was something like 13,000 miles.

Which is roughly halfway around the earth because the earth is 25,000 miles around, I think. So it's a pretty good little trip. We put some miles on. What was the just overall best ballpark?

Wow. You know, I've been asked that question a lot and I have a hard time pinpointing one. You know, there's the classic ballparks like Wrigley and Fenway. So you've got to throw those two in there. I actually really liked the Pirates ballpark in Pittsburgh. Just a great view of the city and everything that was there. I really liked the Braves' new park. And those are probably my two favorites.

What's the worst park? Wow. You know, I try not to give any team a hard time.

I would say that, you know, I liked the Oakland A's game, but they're kind of stuck in an old ballpark there. So diplomatic. You're so nice. Yeah.

All right. Best ballpark food. I'm sure you sampled a lot of different ballpark foods.

I did. You know, I made that the mission for the boys, you know, what their best ballpark food was. I think they like the, believe it or not, the ice cream that comes in the hat in the helmet. That was one of their favorites. That's been a staple for a long time.

I got that when I was a kid. Yeah. I really liked the barbecue in Philadelphia, actually. I mean, every ballpark has its own kind of unique thing.

So I definitely sampled a lot of ballpark food. So in terms of disease treatment overall, you've been in a clinical trial. I guess you're still in a clinical trial, right? So how does all that work? How do they pick who's going to be in that? And then what's the outlook for that whole thing?

Yeah. So the clinical trial process, unfortunately, is pretty long and involved. And, you know, the pharmaceutical companies need to, I mean, it's a necessary process, right? I mean, just like we're seeing now with the COVID vaccines, you know, you have to get to the point where you're trying it on people to see if it works. And so they look for people who have the criteria to meet for the particular drug trial.

I met that criteria. You know, it's actually a pretty small sample size when you think about ALS. And unfortunately, because people can progress so quickly, you know, trying to find someone who can, you know, make their way through the entire trial can be difficult.

But this opportunity came up. The drug trial is particularly focused on my type of ALS. And so I'm happy to be a part of that trial. The great thing now is that I'm in sort of the second phase of the trial. You know, the first phase is a blinded study. And there is placebo in there because they need to see, you know, scientific method, right? How does the control group compare to the group getting the drug? But now that I'm in the second phase of the trial, I am going to get the drug for an extended period of time, at least until hopefully it's proven effective and available for everyone.

Yeah. What kind of warnings do they give you up front? Because, you know, it's a trial for a reason, right? We don't know what's going to happen. So do you have to like sign a waiver?

Hair might grow out of the end of your nose? Or how's that all work? There's a lot of paperwork you have to sign, yes. You know, it's experimental, right? But the thing, you know, when you're diagnosed with a terminal disease and no effective treatment currently available, you know, you're kind of willing to roll the dice, right? And I think for me, as well as many people that I've talked to in the ALS community, there's this thinking of, you know what, even if it doesn't help me, hopefully what I'm doing could help the next generation or lead to something that helps, you know, the next unfortunate person who's diagnosed with this disease. And that's kind of the way I've approached it as well. Obviously, I want it to work.

I want it to be effective for me. But at the very least, I want it to advance the progression of finding a treatment, whatever that might be. Yeah. I would imagine you have a very interesting bond with other people that have ALS. You may not know them. You may have just met them one time at a ballpark, but just sort of a unique club where you can really, nobody else can really understand what you're going through except the other relatively small percentage of the population that's in this terrible club to be in. Yeah, it is a terrible club to be in, but I have met some amazing people, which is why I wanted to, you know, share their stories.

And it is a unique bond that I think we all wish we didn't have. But this is a very active group of people who are fighting for treatments and fighting for care and advocating with the government to get funding and accessibility to Medicare and Social Security and those kind of things. So it's a very active group of people. Because it is kind of a small disease, we have to be vocal. So I've always been, I've always sort of, I don't know if puzzled is the right word, but I've never really understood this idea of raising awareness about a disease. Well, let's raise money to fight the disease. Why do we need to raise awareness? But then when the ice bucket challenge came along and suddenly there it was truly just raising awareness, but on the heels of that, they raised all this money.

And so that's where it kind of clicked for me. Oh, okay, right. There is a benefit to raising awareness. Yeah. And I think those two things go hand in hand, right?

When you're, you know, for me on the tour, I was raising awareness, but I also said, here's my website, you know, please donate. And you know, I think just like with anything else, until something affects you personally, you're not likely to get involved. Right. That's human nature. Right. Exactly. So I think once people realize, wow, this is a really horrible disease and it can be cured, right? It can be treated, but it, it takes money and it takes effort.

And so educating people, making them aware of that, hopefully then leads to the fundraising, leads to the advocacy, leads to all those other things to help stop it. When I was asking if you could come in to the studio here and talk about this, I thought, well, you know, Larry might prefer to do it on Skype, you know, maybe compromised immune system in the middle of a pandemic. Maybe he doesn't want to come in. You were immediately saying, no, I'll come in. And I think it's interesting how your approach to the pandemic situation is completely different, maybe in a counterintuitive way. Yeah. I think I'm in a little bit different of a position to where you know, ALS hasn't really affected my breathing yet. I think if I was someone who was already on a respirator, you know, I wouldn't be leaving the house.

Right. So I just try to be smart. I wear my mask, I wash my hands. But I think, you know, my overall approach is I can't live in fear. I have to live my life. Um, but be smart about the way I live it.

Right. I think, as I mentioned before, we, we don't know how much time we have here. We don't know, you know, when our life could end, you know, could be tripping down the stairs, it could be, you know, who knows what. So again, trying to live my life, and not live in fear. Some people might think, you know, that's a little reckless, but that's just the way I've chosen to live my life. I just never would have thought about it from the standpoint of, well, I can't live this.

I can't just shut down my life because of this. Right. Because I don't know how much of it I have left. Right. I mean, it makes sense when you think about it in that context. Exactly.

I mean, when exactly. Yeah. Well, what's your message, final message to anybody who has gotten some kind of diagnosis doesn't have to be ALS could be pancreatic cancer where, you know, the timeline is short and it's, it's going to take you, it always does. What's your message to somebody in that boat? I think to just focus on what's important in your life. And for me, that's relationships. I think most people would realize at the end of the day, that's what you have in this world. You know, the physical things will go away, but enjoying those relationships, whether it's your family, your friends, whoever it might be and, you know, live your life, focus on the things that are important to you, focus on the, those dreams that you had that maybe you put off because life was just too busy and the positive attitude. Hopefully you have a faith to lean on.

But if not, I mean, I've definitely seen for me and for others that just keeping that positive attitude throughout whatever you're going through will help you get through it. My thanks to Larry. Very much appreciate him coming in to share his story and I hope you were able to get something out of it that you can apply to your life. Again, if you'd like to check out Larry's TV show, ngbnsouthwake.tv is where you can find that online. If you'd like to donate to the ALS Association on behalf of Larry, visit his website, challengelarry.org. Thanks for listening and we'll talk with you again very soon right here on Mr. Stillman's Opus.