Ice Buckets and Ballparks

Neil on the 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 work.

Maybe I just had things happen to them in life, good or bad that make for interesting stories today. I'm talking with Larry followed vina 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 work for salesforce, but eventually the disease got to the point that it was best for him to retire from that job and one disability we talk about how he's dealt with. The emotions that come along with the disease like this effects on his family, his wife Shayna and his sons Quinton 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 where he is now a member of the Board of Trustees for the ALS Association, and he just lost a new online TV show that you can find it in GB in Southlake.tv. Michelle is called FYI that's for your inspiration, where he'll be interviewing different people who have inspirational stories to share if you like to donate to the ALS Association through Larry. He has a website set up or you can do that it's challenge Larry.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 realize that my left arm was smaller than my right and that led me to my first visit to the doctor and the orthopedic doctor looked at me and said yeah that's not right and that's kinda how it all started many, many doctor visits. After that, just trying to figure out what was going on was how long before you are officially diagnosed. From that point I was not officially diagnosed until August 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 any point where you're seeing all this stuff happened on Facebook and people getting ice bucket's number on them to raise awareness about ALS, but you said ha 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 yet 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 my left arm at the time was going to say was 2013 where you first notice something here we are in late summer of 2020 and a lot of people get diagnosed and they're gone in a year.

Yeah, I mean to you. 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 the spectrum of diseases that sort of present themselves in similar ways, which unfortunately makes it even harder to figure out and find a treatment for by the way, when did we stop calling it Lou Gehrig's disease and start on Ellis because 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 and I think it's you know it's a general generational thing where you've got the generation who we know it didn't grow up with. And in that story is a baseball fan you know that still resonates with me but I will talk about your ballpark tour in a minute. Your attitude through all this is been amazing to me you've never shown any signs of self-pity or you know wallowing in what you why me, but that's what I've seen.

I know there have been days where you have those feelings.

So whatever the what of the tough dates look like and how have you work your way through adding the thing about ALS is you never know when the is the last time that you're going to do something right. I was I was running quite a bit. 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 eat you know you don't know when's the last time I'm going to be able to but my shirt or feed myself or know whatever it is so you know every days not rainbows and getting straight so there have deftly 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 TV show and I really think it's about helping people understand that you know even without an ALS diagnosis right.

You never know how much time you have on this earth. So think about how you want to spend it and you note. Hopefully my story and the other stories that I'm sharing will help people just face whatever challenge they have in life because the reality is, are all facing something 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 well it all came about, really 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 people really connected with these positive inspirational stories showing people who are facing difficult challenges, but you weren't letting it 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 you stories of people who 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.

What has the impact been like on your family. So extreme and the boys how have they processed everything what, how have you seen them step up throughout this yeah I know I'm blessed with two incredible voice when he's 15, almost 16 peers in his 13 and they have deftly stepped up in terms of picking up the slack for things that I can do around the house anymore. I've seen just the maturity in them.

And actually it's it's given me a great chance to sort of connect with them and pass things onto them. No household projects now involve me and them because there's things that I can't do right so I just I've really enjoyed spending the extra time with them. Especially, you know, I went out on medical leave. You know I I'm guy who takes him to school and I'm the guy who you know just is able to spend more time with them so when you have this sort of clarification, sort of the way you describe words like right well you know Ford is 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 know what the finite amount of time is being kind of assume that it's gonna be less than the average person what is that clarified for you. One of the things where you say right I want to be sure I do this right. I mean it. 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 and it's interesting this pandemic. I think has woken up a lot of people 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 going through life because it's 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. So let's talk a little bit about the financial aspect of all this, which will then lead us into the ballpark tour you are able to do so. Maybe importance in your case of having disability insurance in place with pretty huge. It was huge. I mean Nina thankfully salesforce my employer gave us this was Justin's employee benefit. Yeah, this is just an employee benefit and and once I realized you know what was available and the fact that I wasn't really able to do my job anymore you traveling by myself was not can be possible and traveling was a big part of my work and you know that if the fatigue level that comes with it. Does 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 the private disability insurance plus Social Security disability like you're not bringing you and what you were before, but it's close enough that you could 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 know we can live on this and yes our lifestyle 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 healthcare that you need modifications you need to make your house paying for things that you know Medicare doesn't pay for its it's 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 a lot of people say they want to do it so like a bucket list item is they want to do a tour of all this nations major league ballpark site and you're the guy who actually did it. What this was last right when you are actually playing baseball with people in the state of people in the stands right so how did that all come together and tell us about that journey yesterday.

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 are fighting this disease that they were fighters right that they were doing this with with great attitudes.

I mean this is a disease that essentially takes away everything for me physically when you get to the point where you can't move, you can't talk you can eat so it's it's it's a devastating disease but just seeing the way people handle this and and didn't let it beat them mentally and and get out that fighting spirit that they had. I just wanted to share their stories and you basically had somebody that you met up with at each ballpark that had AOS commitment correct again.I would go to know that particular CD. We were able to do it.

Unfortunately, and in every ballpark, but for the most part, I would meet up with someone who was a fan of the team will go to the game. I get a chance to talk with them share their stories and put them out on social media so you started where you load up the RV got the boys in the Army so they were at what white homeschool firm for the year or how direct. Yeah they were homeschooled 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 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 trying raise some awareness and again that's what eventually led to the FYI show.

So, as I recall, you finished with the Braves) is currently where you start and hugged how that route go from 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 you know the Marlins and the raise and then we worked our way up the East Coast when across the top of the country.

Make sure that we dipped into Canada to catch Toronto and then continued west down the West Coast in back to Atlantic have a big circle around the country knows 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's earth is 25,000 miles around. I think so.

It's pretty good little drill. We put smiles on what was the just overall best ballpark. Wow you not been asked that question a lot and I have a hard time pinpointing one in others the classic ballparks like Wrigley and Fenway and Fenway. So you gotta throw those two in their I actually really liked the Pirates ballpark in 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 my two favorites. What's the worst part wow you know I try not to give any team a hard time. I would say that you know II liked the Oakland A's game but they're kind of stuck in an an old part ballpark there so so diplomatic yeah yeah right best ballpark food. I'm sure you sample 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 leader not the ice cream that comes in the hat and the helmet that was one of their favorites at the stable for a long time when I was a kid. Yeah, I really like the barbecue in Philadelphia. Actually, I mean every ballpark has its own kind of unique things so deftly sample a lot of ballpark apart food.

So in terms of disease treatment.

Overall, you've been in a clinical trial. I guess you're still in a clinical trial credit. So how does all that work out of the pig who's going to be in that and then what was the outlook for that whole thing yes of the clinical trial process unfortunately is is pretty long and involved and you know that the pharmaceutical companies need to mean it's a necessary process right mean just like you're seeing now with the with the covert vaccines you know you have to get to the point where your trying it on people to see if it works, and so I very 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 trying to find someone who can 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 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 compared 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 is proven effective and available for everyone. What kind of warnings that they give you up front because you know it's a trial for reason right we don't know what's going to happen. So if click sign a waiver here might go out of the under your nose or house work. There's a lot of paperwork after sign yes you know it beat its experimental right but the thing you know, when you're diagnosed with a terminal disease and no effective treatment currently available you younger, willing to to roll the dice right and I think for me as well as many people that I've talked to in the in the ALS community. There is theirs is thinking of you know what, even if it doesn't help me.

Hopefully what I'm doing could help the next generation and or lead to something that that helps you know the next unfortunate person is diagnosed with this disease and that's kind of the way I've approached it as well. Obviously I wanted to work. I wanted to be effective for me but at the very least, I wanted to advance the progression of finding a treatment, whatever that might be.

I would imagine you have very interesting bond with other people that have AOS you may not know them. You may have just met him 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 percent of the population within this terrible club to be yeah it is a terrible club to be in. But I have met some amazing people. Which is why wanted to know share their stories and it it 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 were fighting for treatments and fighting for care in now advocating with the government to get funding and accessibility to Medicare and Social Security and those kind of things so 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 looked puzzled is the right word, but I've never really understood this idea of raising awareness about a disease right invite Willis raise money to fight the disease. Why do we need to raise awareness then when the ice bucket challenge came along and suddenly there it was truly just raising awareness but on the hills that they raised all this money and so that's work on click for me.

Okay 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. Please donate and you know I think just like with anything else until something affects you personally.

You're not likely to get involved), but human nature right exactly. So I think once people realize 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 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 doing on Skype you know may be compromised immune system in the middle of a pandemic maybe doesn't want to come in you immediately cite and document 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 ALS hasn't really affected my breathing yet. I think if I was someone who was already on a respirator. You know I would be leaving the house, 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 have to live my life 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 a keynote could be tripping down the stairs. It could be you know who knows what. So again try 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 have chosen to live my life. I just never would've thought about it from the standpoint of well II can't. With this I can't just shut down my life because of this right because I don't know how much of what I have. [I need it makes sense what you think right to conduct exactly coming when exactly what your message final message to anybody who has gotten some kind of diagnosis doesn't have to be ALS could be a pancreatic cancer where you know the timeline is short and it's it's going to take you have always those 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 your life again if you'd like to check out Larry's TV show and GBM self awake.tv is where you can find it online. If you'd like to donate to the ALS Association on behalf of Larry visit his website challenge Larry.org. Thanks for listening and will talk with you again very soon. Right here on Mr. Stillman's opus