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15 will still get you your 15 % off. Welcome, guys, to episode 256 of Behind the Shield podcast. As always, my name is James Gearing, and this week I am extremely excited to bring to you Eric and Amanda Stevens. Now, Eric was a college football player. He entered the NFL and ultimately transitioned into the fire service. And when he and Amanda were about to get married, Eric discovered that
he had ALS, Lou Gehrig's disease. So I sat down with both of them to hear their journey, how they met, Amanda's journey through collegiate soccer, and ultimately the diagnosis, and then the painstaking realization that there are treatments out there that are working that ALS sufferers cannot access at the moment. So you're going to hear this. It's going to really move you, but I urge you to take the moment to go to their website. There is a GoFundMe. Of course, there
is a... contribution element to this. The ALS patient has a need for certain medical equipment that may or may not be covered by the insurance but the other side of it is helping push the treatment to be released by the FDA. and made available to these men and women that are suffering from ALS that will truly save their lives. So please listen to this episode and then go to their website. The links will be on the webpage
for this podcast. So jamesgearing .com and then go to the podcast episode 256 and you will see all the links that you need to go to. So as I always say, before we get to the episode, take a moment, go to your podcast app, subscribe to the show, rate the show. Five -star rating makes us even more visible to people that need to hear this. And this particular episode, everyone needs to hear this. We need to be made aware that this disease is... Currently suffered by 30 ,000 Americans.
And that's just our country. That's not including all the other countries around the world. And then the other side is take your social media, word of mouth, email chain, whatever you need to share these episodes and get these stories to everyone that needs to hear it. So with that being said, I introduce to you Eric and Amanda Stevens. Enjoy. Eric and Amanda, thank you firstly for welcoming me to your home. For people listening, where are we sitting right now? Thanks for coming.
We're sitting in my wife and I's home in Costa Mesa, California. Brilliant. Beautiful city. Alright, so I'd love to start at the very beginning. We'll kind of go person by person. So Eric, you first. Where were you born and what was your family unit like? I was born in San Pedro, California. So that's like the Los Angeles Harbor area. My dad was a police officer. My mom was a phlebotomist. So we're blue -collared, middle class. And I was the youngest of four brothers. Brilliant.
All right, Amanda. Same for you. I was born actually down here in Pomona, California, but moved up north to Danville. I'm the middle child, so I have an older brother and a younger sister. Yeah, and then I just moved back down here to be with Eric, and my family followed. So now we're back in Southern California. Brilliant. Brilliant. Okay, so staying with you then. When you were young, were you an athlete? Did you love sports?
Yes, I started playing soccer when I was probably four or five years old and played through, you know, middle school, high school and college. And yeah, that's where I met him. So soccer kind of led me to him. Okay, yeah, I figured that was probably the case. So Eric, obviously I know that you were a football player. What was your kind of journey through that sport? Well, growing up, I started playing soccer, basketball, baseball. And some of my really good friends, they were
playing Pop Warner football. And my dad didn't let any of my brothers play football. So I kind of had to beg him and just hope that he would let me play. And he did. He finally let me play when I was eight years old in peewee tackle football. And we were really good. We had a really good team. And we stayed together all the way up to high school. And after my dad let me play, he let my other brothers play. They were a little bit older. Already in middle school and high
school. But one of my older brothers, Craig, went and played at Cal. And he went on to play in the NFL, too, for 10 years. So I got to see and watch him and see what football did for him, where it got him. really my motivation to keep playing. And so I kind of followed his footsteps and played different positions. But I went to Cal too, played fullback there. And that's where I met my wife, Amanda. And after Cal, I had a
short stint with St. Louis Rams. I was on the practice squad for a while, got cut, signed, kind of bounced around a little bit. And I just, I realized this is, you know, this is not what I thought it was going to be like. And I didn't know if I was going to have a job the next morning or what was going to happen, you know. So, I mean, Amanda and I were doing long distance too, so. I wanted to come back home and find something a little more steady. And my other two older
brothers are firefighters for LA City. And my uncle was an LA City firefighter as well. So I've always wanted to be a firefighter. And it was just a matter of time. And I felt the timing was right. The last time I got cut, I called my dad, I called Amanda, and I just said, hey, you know, I'm ready to come home, ready to start a new career. And that's kind of how football ended and how I started going towards the fire department. Brilliant. Now, just to go back to
something you said. So, you started at eight and you were with that same team for 10 years? Yeah. Yeah. So, we stick together until high school. And then we had two different high schools in our local area. And so, some of us went to one high school, some of us went to the other one. So, we split up and it was unfortunate. Neither high school was very good. But if we were together, I mean, I think we would have
been pretty good. Brett, now what do you think physically and mentally separated you from other people that allowed you to play at that high level? Yeah, I think I've always been super competitive. And being the youngest of four brothers also, I think, helped too. I'm sure. I feel like I was always trying to prove myself and always trying to keep up with my older brother. So I always kind of had that. That gave me the advantage,
you know, because I'd be. you know, wrestling or, you know, playing in the backyard with my brother and their friends who were two years older than I was. So when I would go play with people, you know, kids my own age, I was kind of on another level, you know. So it definitely really helped me. And I got to kind of see and learn from them and what mistakes they made. I've always been kind of a visual learner, so I've always watched my brothers and just learned
from them, constantly learning. Brilliant. Now, with your career, I read somewhere that you injured your knees at some point. What was the injury and how were you able to rehab that? I did. So this is my sophomore. Somewhere you're going into my junior year of Cal. I was the top -ranked fullback that year. And your junior year is a real big year as far as, you know, as far as getting tape for the next level NFL and film. It's a really big year. It kind of sets up your
senior year. Actually, the first day of pads in fall camp going into that season, my foot got caught in the turf funny, and I was going out for a pass, and it just tweaked funny, and I fell back. Popped it and I tore my ACL. Oof. Yeah. And my ACL and meniscus. Okay. And the rehab, it's a long rehab. Six months minimum. The trainers and staff were awesome though. And we just stayed on top of it. And I just had next year on my mind. You just have to keep the...
Yeah, you have to keep that in mind as far as working towards that goal, knowing that you have another year, knowing that the team still needs you. And that's kind of what I did, and that's what motivated me to get back to my teammates and my coaches. Right, because you were the captain at Cal, is that right? I was my senior year.
Senior year, okay. yeah so all right well amanda let's go to you so you said you played soccer lead me in through your college career and how you guys met okay um yeah i got recruited from cal my junior year of high school um so i committed kind of early and went in my freshman year and actually blew my knee out too um so i had to redshirt my freshman year at cal um But like Eric just said, you know, the trainers there, the coaches, they're all so supportive and they
work hard to get you back and you just try to keep that positive mindset and attitude. So I played sophomore, junior, senior year at Cal and I was captain my senior year as well. A couple of overachievers. We got to the NCAA tournament every year I was there. I don't know, I feel like there's this curse against us where we can't get past the second round. But still, my senior year was probably one of their best seasons in
a long time. We had like 16 wins or something, which is something that the program, they don't get that many wins that much. But yeah, Eric and I met my sophomore year at Cal. We kind of knew of each other because he was a year older and hung out with a lot of the soccer girls his year. And so we knew of each other just through mutual friends. And I think we might have ran into each other one time before we actually officially met. I was walking up the street and he was walking
down. It was after the big game. So Cal versus Stanford. I think Cal lost. Yeah, we lost. We lost pretty bad. But I stopped him because I kind of knew him and just gave him a hug. And he invited me to a party later that night. And so I went. And then, yeah, we've been dating ever since. Now we're married. We've been together ever since. Brilliant. So we're going to get to the fire department again in a second. But
as far as career, what about your path? So after Cal, I went to St. Mary's actually and played my fifth year of soccer there while I got my teaching credential and my master's. So I'm a second grade teacher right now in Costa Mesa where we live. And I've been at this school for four years now. I love it, yeah. I've taught second grade and fifth grade, but I think second grade's where I belong. Yeah, the little ones.
Now, is there anything, I actually had a teacher on a couple weeks ago, and anything that I think we can do better, if we can learn from other countries, for example, I try and discuss it on here too. On your perspective, what are the things you think that we do well and some things that we could improve on in education? Yeah, I think... What my school and just, you know, through my teaching program, what we really focus on is just differentiating the instruction to
really target each student. I think, you know, you can't just teach to the whole class. It really has to be differentiated for the group of students that you have. And I think, like, I use a lot of hands -on. activities or lessons to really keep them engaged. I think that's a really hard thing as kids are at school all day long and you need to keep them focused and engaged and having fun or else they're not going to want
to be there. So I know my partner teacher and I in second grade, you know, it's a lot of addition and subtraction and just working on like sentence structure and things. So we try to make it really interactive for. And I think that helps them learn is just being engaged and having that hands on experience. So that's something we try to do. And I think it's helping. But yeah, we just started a new kind of curriculum a few years
ago. It's called the Common Core, where it's not really memorizing, but more really explaining your thinking. So it's not just like five times three is 15, but kind of why that is. The answer not. So it's not really so much about the answer. It's how you get the answer. Yeah. So that's difficult. That's hard, though, for kids to grasp. So that's been a challenge. It's hard for parents to grasp. Yeah, I've heard. I've seen some pretty funny Common Core memes. Like, you know, I'm
just helping my kid with his homework. Apparently one chair and a badger equals Venezuela. Yeah, yeah. I know. Sometimes we'll have to look at the teacher guide like, oh, goodness, I don't even know the answer to this. It's sad. I was embarrassed how young my son was where I'm like, you're going to have to ask someone else. I'm going to make it more confusing for you. I know. All right. Well, speaking of education, we'll
go back to Eric. Coming from, you know, high level athletics, what was the academy like for you? The fire academy? The fire academy, yeah. Yeah, it was. It was tough, I think. As far as physically goes, I felt pretty good because of my history of football and athletics. And I was fortunate enough to be accepted into the academy. You know, pretty close to... Or, you know, pretty short after playing football. So, I was in pretty
good shape as far as physically. But, you know, mentally, I think is the hardest part, you know, of the drill to our academy. You know, the pressure that the instructors put on you and the staff. And you're also learning a completely new language, you know. That part was difficult. But you have your classmates that you lean on and everyone works together as a team. And ultimately, you know, that's what gets you through it. But it's a long... Long, strenuous drill tower for sure.
How long is LA's? How many weeks? It's five months. Five months. Yeah, it's five months. Are you certified when you enter that or are you non -certified? You're not certified, yeah, so until you finish. And then you have a year of probation. In the field, you do three different houses. So, but, yeah, I mean, Amanda could tell you, too. I mean, it's stressful. That's a long five months of just grinding out, you know, learning a whole new language, sleep. You're up early
in the morning and home late at night. Especially LA traffic. Yeah, exactly. So, yeah, it's every day. And studying, memorizing. I think I could probably do a lot of the drills or whatever because we practice so many times. Yeah. Well, I'm not the best public speaker, so I have to memorize everything. So I would just give all my drills to Amanda and my note cards, and I'd read them to her, and she would read them off. She spent
countless hours helping me. Yeah, I definitely couldn't have gotten through without her for sure. Yeah, I can relate. I could put the ladder up, but I couldn't remember the words I was supposed to say while I was putting the ladder up. Exactly, yeah. I'll put the ladder up a million times, but yeah, it's just when it came to memorizing.
The monologue. Monologue, yeah. exactly so it was interesting as well i had a conversation just the other day and we're talking about um individual sports and team sports and i forget who i was talking to but he'd been a wrestler and he played football and i found that with a fire service um you know i did martial arts and fought and it would be part of a team sometimes but it's just you and that other person on the mat at that time and that's kind of what it's
like is we're part of that group but each of you have those individual responsibilities so you know i think it's it's uh you can glean a lot from being an individual athlete and a member of a team either of those tracks if you have both even better yeah absolutely yeah that definitely helped um the transition from being a football player to being a firefighter as far as the team aspect and everyone has their role um and everyone's role is equally important you know um so That
transition was easy as far as the team aspect and knowing your role and being someone that you can count on and accountability and trustworthiness. That's huge. I'm sorry to interrupt, but what about, so you were captain, Caltech, you were NFL, now you're a probie. What was that like for you? I mean, ego is the wrong word, but, you know, for realizing that you're now bottom
of the pile. Yeah, well, it was, I mean, there's times, you know, you just, you want to do something or you want to say something, but you know your role, you know, and everyone goes through it. And it's a rite of passage, you know, you earn it through. working hard, keeping your mouth shut, and just going to work. And that's what I did when I played football, and that's what I did as a firefighter too. You know, when you play football your first year, unless you're
a rare exception, you're on the scout team. You're at the bottom of the totem pole. You have to earn everyone's respect, and you work your way up, and that's the same thing as the fire service. Start from the bottom, and you earn people's respect through hard work and giving everything you have. You just, you know, big ears, big eyes, and a small mouth, and that gets you through. Yeah, absolutely. And which apparatus were you
assigned to in the end? So we were, on probation, you do an engine house, and then for three months, I believe, then you do your truck house, and then your third house is kind of like your 800, what we call, or your ambulance. Oh, okay, rescue. Yeah, like the BLS rescue. But we rotate. Our department rotates. We rotate engine, engine truck. And then I was in a hazmat station too. So we also rode the hazmat squad. And we didn't have a BLS rescue either. So we were all fire,
all fire side. We had ALS rescue, but those were the paramedics. Okay, so was it separated in LFT? Are the ALS rescue medics fire medics or are they just medics? So some stations have a single function medics or you have a rotation. Our medics were single function. It just depends
on what station you're at. All right, so I guess we'll swing it back to you, Amanda, from through your eyes during obviously... um leading up to the wedding like when did you realize that everything wasn't exactly the way it was supposed to be and then kind of talk us through you know the wedding and then that point yeah so um i want to say a few months before the wedding maybe around march or april um he would say little things about his left hand just feeling kind
of weak um but we didn't think anything of it or you know maybe he like tweaked it when he was working out because we were working out pretty hard for the wedding um as we all do yeah we were trying to get skinny to the photographer um so we didn't think much of it um or like if there was something in the kitchen i couldn't open a bottle i would go give it to him and he i would see like he'd maybe try it with his left hand and then have trouble so then switch it
to his right are you left -handed No, no, I'm right. Right. Yeah. But didn't think anything of it. And then I also remember one day, again, after we were working out, we were sitting in the car and he's like, whoa, look at my arms. And they were twitching really bad. But we just thought maybe he worked out too hard or he was dehydrated. Yeah, again, we didn't think much of it. So and I'm pretty sure it ended up going away or maybe not just being that like intense.
And so he didn't really tell me much more than that. Just little things of him saying it out loud or me seeing the twitching one time. So I didn't think anything of it. And then. We had our wedding on July 27th in San Luis Obispo, which is kind of like a midpoint because a lot of our friends are up in Northern California and then a lot of our family lives down here. So yeah, it was a perfect day. It was awesome. It was really special. And then we went on our
honeymoon to Montana. Eric's always been like an outdoorsy. who had been wanting to go to Montana his whole life. So we had a really great honeymoon. We went to Yellowstone and Glacier. We did horseback riding, fly fishing, whitewater rafting. It was great. And again, he didn't tell me anything and I didn't notice anything. And his brothers and his dad... you know, would talk about his speech sometimes, but I talked to him every day
and he's always been somewhat of a mumbler. So again, I just didn't really notice because I'm talking to him all the time and it just wasn't something that I really realized. So it wasn't until we got back from the honeymoon when he showed me the twitching in his arms. And what did that start? Maybe during the honeymoon or? That twitching? Yeah. Yeah, I mean, it was before that. Yeah. Yeah, I think it definitely progressively
got worse. Yeah, so just interject then. So from your internal experience, when were you noticing it? Yeah, I was maybe probably low before March. I was at work, and I just, I noticed, you know, We'd go to a fire, and I'd just be more fatigued than usual and run up to seeing her call, and I'm already out of breath, and I'm trying to catch my breath. I'm like, man, this is weird. I must really be getting out of shape, and I'm 29 years old, and all the older guys are like,
yeah, hey, kid. Wait until you're in your 40s or in your 30s. You're really going to feel it. This is what all the guys are talking about. I started dropping tools, mainly in my left hand, picking up a saw. It was becoming difficult dropping wrenches while I was working out. I noticed. I was dropping dumbbells, slipping out of my hand, and I'd go up to do pull -ups, and just
my left hand would slip out. And like Amanda said, I've always been sort of a mumbler, but guys at work, my dad, my brothers, noticed my speech becoming... slurred or slow and i noticed that too um but i really didn't think anything of it and it did slowly get worse um and our wedding was coming up too so we're our main focus was the wedding and i didn't want to bother anyone or create unnecessary stress if if it was no big deal I just figured it was an old football
injury or something. But every now and then I'd go on Google, I'd search, you know, some of these symptoms I was feeling or having, and ALS kept popping up. And I didn't really believe it, you know, at first, but as kind of time went on, weeks or days, I would just continue to search and do more research. And I just started hitting every single box. And that was probably right before our wedding. And then, so we had our wedding,
went to our honeymoon, like Amanda said. And as soon as we got back, I think the day we got back, I said, you know, hey, Amanda, this is, This is what I think might be going on. I'm checking every single box, and I know it's extremely uncommon, especially for someone my age. But it's just the symptoms are just too close and too exact to everything I'm reading. So we need to see a neurologist right away. family doctor and just went straight to a specialist. Good idea. Yeah.
Cause it, yeah, as you know, it's just a long process, you know, it's like you gotta wait three weeks to get an appointment and then three more weeks to get an MRI and then another two months to get another MRI. So I'm like, you know what, let's skip all that and let's just go straight to it. I think I know what's going on. I'm obviously, I'm hoping it's not, but. In the back of my mind,
I have this feeling. And so we got an appointment as soon as we can with a neurologist, and we got an MRI, and they do what's called an EMG, which shows your nerves and nerve activity within your limbs and your neck, your back. And the MRI looked good. And when we went back in to discuss the MRI is when I got the EMG done. And as we're waiting for the EMG results, it's probably like 30 minutes or so, the doctor doesn't say a word to us. We're just sitting in the room
with him, and he's typing on his computer. Doesn't even look at us, you know, for probably about a half hour. And I'm just like, hey, doc, you know, everything looking okay or what's going on? And just no response, very short. And he turns around and it's probably about 40 minutes now. And he goes, well, I think you have ALS.
He goes, I'm sure you guys heard of it. Lou Gehrig's disease you have a two to five year life expectancy and um that was it pretty much he's like good luck and you know we'll see you later and he left the room so we were in the room with him for probably about an hour he said maybe five words and that was you have ALS you know and good luck You know, that reminds me, I had a widow of a firefighter who died of cancer. It was the same thing with them. Doctor goes, yeah,
you got it. It's terminal. You're probably going to die, you know, this amount of time. And pretty much was like, all right, there's a door kind of thing. And that's, you know, we talk about bedside manner and you hear this. And again,
there's some great doctors out there. that's unacceptable to have that kind of diagnosis and not not you know not only should you be engaging you guys but also immediately bringing in resources to be like okay this is the diagnosis but here's step one here's what we're going to send you next exactly there was no further plan after that it was he left the room and he and uh that was it i mean when he told me that I almost passed out. Yeah, I had to, like, run over. He didn't
even, like, prepare us or anything. I mean, I had to literally run over and hold him up. Like, he just turned white. And, yeah, it was horrible. And then the doctor looked at me and was like, I'm sure you know what it is. Like, yeah, it's, like, so hard to go back to that day because we tried to, like, block it out. But it was the most horrible experience. Yeah, it was bad. Yeah, so after that, obviously that's a huge blow. Although I had a feeling that's what it was,
you're never fully prepared to hear that. No, that your life might be shortened considerably is not exactly news. Right, and it's two to five years of a very difficult life. Paralysis comes. a lot sooner. I'm sure you can just hear my voice as I talk. I'm slowly just kind of losing my voice and having a lot of hard times speaking. But with a diagnosis like this, you have to get
second opinion, maybe three, maybe four. So the unique thing about ALS is that there's no real definitive um tests that that says okay this is als they kind of have to rule everything out so i called my team doctor who is now the team doctor um for the los angeles rams and and i said hey doc you know this is what's going on they just told me i have als um basically diagnosed me you know within two weeks um And he goes, that's crazy. You don't diagnose someone with
ALS in two weeks. There are so many other tests that you guys have to do. I'm going to set you up with a neurologist at Cedars -Sinai in Los Angeles. So I ended up getting along with them
and much more thorough in understanding. sympathetic you know professional right just just to be able to sit down with me and my wife my brothers my dad and explain to us you know this is what ALS is I can see why that neurologist came to the conclusion but let's roll out all these other things first you know so we did that we did a lot more blood tests we did another MRI And ultimately, you know, everything came back clean and everything looked good. So, basically, that, you know, means
you have ALS. So, we come to find out that, so with ALS, there's two FDA -approved treatments or medicines, and they may or may not extend your life by 30 days. So a lot of people, a lot of patients don't even take the medication. How do they even gauge that they're improving in 30 days? When there's a variety in how long people are living, certainly I'm sure by a few months, how can you even proclaim that you're adding
30 days? That seems crazy. And that's so difficult about ALS and it's becoming a problem right now. And we'll get into it, I think, in a little bit. But there's no biomarker. Everyone's different. Everyone progresses at a different rate. And there's no way to really tell or judge. They have a sheet called the ALSFRS. Yeah. And that's how they judge. And it's a real basic physical. They just grab your hands, test your grip strength, ask you a few questions. And that's how they
gauge the test. And every time we've done it, it's been a different doctor or an intern. So who's to tell you that, you know, that doctor feels a different grip strength? You know, it's stronger on pulling your arms down. It's very subjective. And that's been really frustrating because what we learned also was that for the first time ever in 150 years, there's treatment that is slowing the progression down, legitimately
slowing the progression down. And some people are even having... reversals mean they're getting better improving and that's that is huge in the ALS world really in in the whole medical world and but the only way you can get to is if you're picked for the trial and it's a it's a brainstorm treatment or sorry it's a stem cell treatment by a company called brainstorm and it's it's a The treatment's called Neuron. And they're on the Phase 3 trial right now. And so it's been
in the FDA process for almost 10 years. And they do a 50 % double -line placebo. So 100 people are getting the treatment. 100 people are getting
sugar water. putting their back but they don't know and you don't know until the whole the whole trial is done um it's not just like a pill that you take it's a it's a year -long process and it's very like um like intensive on your body where it's you know there it's a bone marrow aspiration so they extract your bone marrow and then they spin your stem cells with their their own medicine and then they put them back in and you have to stay in the hospital overnight and
do all these procedures. So it's not like you're just taking a pill. It's impacting your body a lot and it's a year long. And ALS patients, we know they don't have a year to waste if you're getting sugar water in your back. Like you said, especially if you're getting, because I think the bone marrow, isn't it pulling from the hip? Is that right? It's supposed to be extremely painful. Go through all that. Oh, by the way, you had the sugar water. Exactly. Thanks for
all the pain and trouble. Exactly. Thanks for helping science out. Yes. It's crazy. The donation is appreciated. Yeah. It's absolutely insane. I couldn't believe it. So here the doctor tells
you, hey, well. guess what there's treatment and it's working first time ever but you have to meet the right criteria which is a six month lead -in phase just to see if you're progressing fast enough or slow enough to be meet the perfect criteria and then if you do accept it it's a 50 chance that you that you get the treatment um so to hear that there's treatment that is working and helping people for the first time ever, but you can't access it is, is, uh, for
a terminal diagnosis is just crazy to me. And I can, I, we can believe it. So, um, really, you know, uh, especially in a phase three part of the trial, which means that It's already deemed safe in phase one. In phase two, it's proven that it works. So it's safe and it works. So why aren't people getting the treatment yet? People with ALS, there's every 90 seconds someone's dying from ALS. Every 90 seconds someone is diagnosed with ALS. There's over 30 ,000 Americans right
now. living with it, dying from ALS. And one in six people with ALS are a veteran. If you're a first responder or an athlete, you're two times likely to get ALS than your normal person. Do they think there's a connection with TBI and ALS? So they don't know exactly. My doctor seems to think that. My history of football, concussions, definitely has something to do with it. But no one can tell you and pinpoint exactly what causes
ALS. They think it could be from head trauma, stress, environmental exposure, some sort of toxin. But they can't pinpoint what exactly is
causing the disease. so that's kind of what we learned at our second visit was that holy you know holy moly there's there's you can say shit yeah yeah holy shit there's there's treatment out there and there's a there's a chance to save thousands tens and thousands of people but and it's safe and it works but no one's getting it because They have to collect data for two years? When the FDA has approved many meds that we know were very unsafe, that they gave to not terminally
ill people. Exactly. So the more research we've done, we found that treatment for ALS is in the same line as treatment for a headache or arthritis or erectile dysfunction. It's in the same process. So they treat ALS the same way and it takes the same amount of time to approve that drug. There has to be something different. That system is failing terminally ill people. Specifically, you know, right now with ALS, it's like the FDA has the ability to fast track or approve something.
uh medic medicine if it's safe and it works and you know they feel that it's it's gonna you know help a lot of people but for some reason als has like been forgotten it's like the and we're just like left in the dust here so and 30 000 people that's not this you know crazy out of left field diagnosis where you know you hear these like five people on planet earth have this thing but 30 000 i mean if 30 000 children were killed in schools the impact that would have
you know you know 30 000 victims of a terrorist attack or and it's you know when you put it in that perspective and look at the obesity crisis here we focus so much on schools and we should but we're losing hundreds and hundreds of thousands of americans through all those things which are also you know those are preventable Like it's not ALS or pediatric cancer where you're trying to figure out, well, where the hell did it come from? Obesity, you know, all these, you just
change the way you eat and you move. It's that simple. So that's what's frustrating to me hearing your story is all these meds get approved that shouldn't even be needed if we were teaching people how to eat and move. And yet pediatric cancer, which is a fraction of the overall cancer budget, where again, I think most... Adult cancers are, again, environmental and things we put in
our body. The pediatric one where these little babies have no way of eating McDonald's and starting to screw themselves up, they get a fraction of the research, and it's the same with ALS. Yeah, it's incredible. ALS has become more prevalent, and people are getting it younger and younger. A few weeks ago, a 15 -year -old was just diagnosed with ALS. And the average is, what, like 40 and 50? Is that right? They say between 40 and 70.
70, okay. Yeah, that's the average age. But every once in a while, you know, you have 15, 9, 16, 29, 20s. It's just... It's not as common, but... So that's kind of, you know, what we've really been focusing on right now is spreading awareness and trying to, you know, show the world that, hey, this is what's going on. This is real life. People are dying every single day. And there's treatment there that could potentially help and
save. thousands and thousands of lives but no we don't have access so like something's got has to change you know this is it's really it's inhumane you know um especially the way they treat the the clinical trial you know there has to be a way to be able to do trials where more people are getting the treatment right i mean doing a 50 double blind placebo on a terminally
ill patient, that is insane. It's crazy. Or like you said, if you're doing this research, you're realizing that this one is working, then maybe people that are progressing deeper in, give them
a damn treatment. And then maybe some of the newer diagnosis, ethically maybe you could say, well... we'll do it on here but yeah you had to have that knowledge and that that possible way of saving lives and just to withhold it especially you know a year of treatment i mean that just doesn't make any sense to me at all especially with a year it doesn't sound that much to someone who maybe has a life expectancy of 89 years a year to someone who maybe has a life expectancy
of three years that's horrendous yeah and so Another thing that blows my mind is the patients that received the treatment and they got better from it, as soon as the trial's over, they don't get the treatment anymore. So we became real close to an ALS patient. His name is Mark, and he was in the beginning of the Phase III trial. Received the treatment, got a lot better, was able to talk a lot better, was able to walk much better. So you're talking reversal, not even
slowing of the decline. Not even just slowing, yeah, a little bit straight reversal. And as soon as they finish, as soon as he was done, they cut him off from the treatment. And now he's nine months from his last treatment. and he's progressing again. So here's a guy who literally had a reversal, and now he's feeling himself go right back to where he was. It's just so crazy. I mean, I don't know how you were allowed to
use those people for a year. So how are you not allowed to put in the claws, even if everyone else is screwed? That 50 % who actually got it, who are improving, how are you not allowed to say, well, Those people can still do it. But I don't know. How can you sign the piece of paper that says, yes, I agree to pull that out? So you have no choice. You have to sign the paper because when you receive the diagnosis that you have ALS, right now you have a 0 % chance of
survival, 100 % fatality. So your best shot. is getting this 50 % chance of treatment. So your only choice is to sign that paper. No, I'm talking about the medical community to sign the paper saying, let's stop that. Oh, no, of course. I mean, everyone's going to sign it to come in. But I'm talking as a person, whether it's higher above the research community, whatever it is, or a group of people that have said, we consent to, even if this is working, to withdraw it.
And ethically, I don't know how you could even sleep at night. No, I know. So it completely, I mean, it totally blew my mind. Amanda, too, and my family. And it seems like everyone we tell this to, it's like their jaw's on the floor also. I mean, we didn't know any of this was happening until you're literally thrown right into it. So that's like what we've been fighting for. That's our mission. Our goal is to educate people on what's really happening here. It's
like, yeah, this is a really sad story. And we just got married and, you know, my husband has ALS. But also there's something there that can help him. And this is what's going on and he can't get it. And so, yeah, I would say that's like our true story is no. you know, we can save
him and 30 ,000 Americans as well. And that's kind of what we've been fighting for and what we've put all our energy into because with a diagnosis like this, it's hard day by day to, I mean, you never forget about it, but it's hard to move on with your normal life. So yeah, that's where we're channeling all of our energy. I think it's a really good idea. So a few years ago, I myself put myself in a bathtub full of ice, filmed a funny video, challenged three other
people, and that was it. I'd done 22 push -ups because we lose a veteran every day to suicide, and that was it. You know what I mean? And I talk about this now. Those things, the fact that beginning a conversation, well, that's great, but they're also missing the fucking point. Excuse my language. They're completely missing the point because... And we're not trying to get a bunch
of videos of people jumping at ice. We're trying to get people to, you know, and again, not trying to get people just to throw money mindlessly at a GoFundMe either. We're trying to get people to understand, and I do it with this project with all the elements of health that we have on it, to get so angry that they do something. And, you know, I hope this helps with you, but I've learned something sitting here. I didn't know there was a drug that, you know, that is
going to work. of course there's a fundraising element to it as well but i think there's more power and a whole bunch of angry people saying you need to change this you know to their politicians or whoever it you know it takes and i think it's the same with the fire service and other areas too but um yeah we need to stop trivial physical challenges and start going I need to look into this, you know, and I think that what you're
doing is what needs to be done. You know, it's with, you know, the AIDS epidemic and all these other diseases. It took usually a brave man or woman to kind of be that beacon, be like, this is what it's like. This is what we need to fix. Yeah. So, yeah, I mean, you brought up the HIV and AIDS epidemic. We're in a very similar situation. First time ever, there's treatment that's helping people. And we just have to get access to them. We need to raise awareness, and there has to
be some sort of change. And like Amanda was saying, that's what we're doing all this for, is for that reason. And the fundraising, like you said,
aspect. is is important too but the what's most important is getting the awareness out there telling the true story and letting people know that hey this is really going on this is this is real life you know um and this treatment this this one specifically neuron um is just the closest to being approved so that's one we're really really fighting for but there's over a dozen behind it. That might be even better. That might
be better, exactly. But as long as they're stuck in these crazy, long, drawn -out trials and phases, over hundreds and thousands of people are going to die from ALS. Unless we change this pathway to gain access to these treatments, people are going to be dying. And that's the harsh reality
of it. it is well so going back to the fundraiser though so my big thing with fundraising in general is we do hear of these organizations you know so much of it goes to what they call administrative costs and we see you know these people going on vacation and all this stuff with tech with the money with you specifically though there's obviously you know god forbid there's a decline there is definitely equipment that's needed so you know tell me specifically what a patient
in general with als would need as they go through that timeline yeah so um right when i got diagnosed the first thing that came to my mind was i don't want my wife to suffer i don't want my family to be in debt um because of me you know and als is extremely expensive it is a As you decline, you need a ventilator to help you breathe, a trach tube to feed you, full -time, 24 -hour round care. It's estimated that it's around $300
,000 a year to take care of an ALS patient. A lot of ALS patients put their family in debt, far in debt, and a lot of people choose not to live because of that. So one of the first things I said to Amanda, my dad, my brother, I said, you guys aren't going to suffer because of me. So let's do everything we can to raise money. for treatment and also awareness. Once we have a safe amount of money put away, then we can start focusing on putting our money that we raised
to a foundation or a research organization. who's doing the right thing, you know, who's looking for a treatment, who has the right program, you know. So a lot of what we're doing right now is, you know, we meet with a lot of different people and we're sort of trying to sort it out and figure out who's doing the right thing, you know, who's using the money the best, who's putting it towards treatment and finding a treatment. That's going to help ALS patients now, you know,
not 12 years down the road. We want to find someone who has that sense of urgency that I do, you know. That you need to have this particular disease. So finding people that get that sense of urgency is difficult. And unless you have ALS or a family member has been affected by it. They don't know, you know, they just, they don't think about that. They don't have that urgent, let's help people
now. There are a few out there that do, and that too we plan on partnering up with and helping and, you know, getting things pushed forward faster. But, yeah, that's sort of the fundraising aspect of it. Yeah, and that's, again, with what you're talking about, there's a direct, every single penny of that dollar is going to go and contribute to what is ultimately needed. As a slight tangent, you've got the, like you said,
the average age diagnosis. I think one of the most famous cases is Stephen Hawking, who left fifth. My memory serves me right from the movie. He was like 20s when he got it. But his life expectancy was incredible. Do you know what the difference was? Was it just luck? Yeah, I mean, he just had a slow progressing form of ALS. And, I mean, yeah, he lived until he was 70, I think, right? Yeah, around there. But those weren't good years. That's a very difficult, that's a
hard way to live, you know. But he did make it that far and he's an extremely rare case and probably one of the only people ever to live that long with ALS. And it seems like that individual
being so cerebral anyway. as devastating it must have been to lose his physicality had so much going on here he's probably able to deal with it right whereas most people when we lose this i'm sure exactly like right i mean that i mean simon hawkins like that guy's amazing um and like you said he's so so smart you know like for me it's like my whole life i depend on my my body you know my strength and in hands everything i've done i've done with my hands and my arms
and my legs you know not to say i'm not not smart but i've definitely more of a you know physical kind of person you and me both trust me yeah i wouldn't want to be left with my thoughts yeah why can't chickens fly yeah um but yeah So. That was crazy to me when I heard about all of this. It's like your whole body shuts down, but your mind and your brain still work perfectly. You're just trapped. It's cruel what it is. It's so. It's extremely evil disease. I mean, it is like,
I mean, it's a nightmare, 100%. Yeah. Now, we want to move on to positive things that are working and going to be it. But I just had a conversation with a palliative care physician. I've had on twice now. And one of the areas that we're all terrified of talking about but I think has value is choosing the day that you die if it comes to that point. And ALS was one area that he discussed was actually an acceptable, applicable thing.
obviously not you we're sitting here having a conversation things are great today and all today is all we have but have you seen in that community that um you know some people do choose to do it before there's that complete diminishment of their their physicality yeah yeah i i try to stay on that literature i try not to go down that road but you can't help but think about that you know um that's just the reality um I have heard of instances where people choose not
to live and leave this life early. But as of right now and the way I feel, I still have tomorrow. I still have the next day. Not everyone could say that. I think choosing life, And living this life the best that we can is worth fighting for, you know. And that's exactly what we're doing. We're fighting for this life and also over 30 ,000 Americans who also are going through the same thing. I mean, this is a lot bigger than
me. This is about everyone, you know. I'm fortunate enough to sort of have this platform because of my history in sports and the fire department, which has been amazing. The Brotherhood and especially around the world has been rallying. And it's given us this incredible platform. And I feel very grateful and just so fortunate to have it. And I want to do everything I can to help. The mass of people that have this disease and they're going through this because they don't have to.
There's a treatment there. It's working. This could be stopped. We just need to fight for it. Absolutely. It's amazing seeing the movement. The Axe ALS movement is freaking awesome. Yeah, it's really cool. Talking to Ellen and all these different people. So like you said, there's many people, sadly, that get given a platform and they do nothing with it or bad things with it. Today, things are good and you have this opportunity to really advocate for the people that have a
voice. And I think if you get enough people angry, and there's so many things that we need to step up and do, we've let... douchebags in suits run our country and our health care and it's you know it's not working so we need to get our people angry enough to shake the tree and be like nah this is unacceptable you know and i hope that the right people saw ellen saw the news reports listen to this whoever that are able to influence them and maybe you know push that through yeah
yeah that's what we're open to right well going to what you can control today um You know, we discussed before we started talking about some things that you realized that you could improve in your lifestyle. So what are some of those that you've done as far as nutrition and supplements? So a lot of the research we've been doing was, you know, ALS is a inflammatory disease, right? It's a rubber band. So there's inflammation going on in your brain and it's triggering. you know,
this neurodegenerative disease. So anything that you can do to decrease inflammation is going to help with symptoms, help with progression. So it all comes full circle to diet, what you put in your body and what you're eating and what kind of vitamins, proteins, amino acids, supplements. That can help with that. And so what my wife and I are doing is a diet called the Terry Walls Protocol. So very high in vegetables. You can still have meat, but it's grass -fed organic
meat or organs. Which are really high in vitamins too, like the liver. High in iron. Yeah. So that's kind of what we've been focusing on right now. Just, you know, our diet and trying to eat better and decrease that inflammation. We have a sauna in the room next door. So trying to, you know, just detox. Sweat out the toxins and just getting the good stuff in, the bad stuff out. Have you done any of the ice bath, cold showers, anything?
Ironically, ice bath with the ALS. Yeah. But, I mean, I wonder if that cold contrast would be good for inflammation too. Yeah. So, I mean, when I was playing football, I lived in the cold bath and hot tub. That was like what got me through. And so, it's funny. As soon as I got this diagnosis, I was like, I just craved ice bath. I just wanted to go to the ice bath so bad. So, yeah, I've been doing ice bath and the sauna too. And I
think it helps. It's hard to tell. I definitely feel like I'm progressing still, but I don't know if I'd be progressing faster if I wasn't.
So that's the unique thing about ALS. It's really hard to... pinpoint what's working or what's not or what's you know maybe causing you to progress faster so it makes me feel a lot better that's for sure um is it slowing the progression down i'm not sure i think it's just a little early to tell you know i think i'm four months into this so um i do feel better while i'm doing it and yeah So that's mentally I feel good. It's hard to tell as far as physically. So I think
time will tell. Now what about you take CBD and CBG? You just learned about today. Yeah, so I take CBD before I go to bed. It kind of just helps me relax. It helps me to sleep. And then CBG is very similar to CBD. It doesn't have that. that psychoactive THC does it's just and it's been helping it definitely helps we have like a CBD rub too that I put on my arms that helps with twitching and fasciculation but I have read a lot of good stuff about THC with ALS too but
As a firefighter, we get drug tested. I've gotten to stay away from that. Growing up, my dad always taught us, stay away from marijuana. You can drink beers, but don't smoke pot. I had this
engraved in my head. marijuana is bad stay away from it but um if the more research we've been doing it seems like you know people are having a lot of success with it so and that's what we were talking about before we started recording it's it's sad that our hands are bound you know and you and i both know you could be prescribed opiates and you come drink when you get home every night No one's going to bat an eyelid, but God forbid you take THC, you know, then the
world loses its mind. And I hope you personally are able to get a point with your employer that they're able to make an exception. I mean, you're not running calls at the moment anyway, you know, but what if it works well? You're doing everything else right. Whether, you know, you have no gauge of it slowing down, but you know damn well you're not accelerating it. You know, you're eating clean and taking the supplements, but I mean. I've heard some incredible things about THC as
well. And, you know, what have you got to lose apart from someone telling you because of some racist, you know, dude in the 1930s that demonized marijuana that you can't try what might be another, you know, incredible benefit to slow down ALS. So I hope that's resolved too. Yeah. Yeah, definitely. Right. Well, I'm going to go to some closing
questions because I've been going. whatever an hour now exhaust you no that's that's didn't seem like that long it seems like it's going off pretty fast yeah it usually does yeah someone's a look at my um but uh so the first one i love to ask and we'll ask you know for both of you guys um is there a book that you love to recommend it could be what we discussed or something completely different um i would say that the terry walls protocol i mean that's I don't know for sure.
I mean, I think it's too early to really tell. But everything she says in there just makes perfect sense. Just as far as getting back to the basics, you know, eating clean, eating vegetables, eating, you know, grass -fed organic meat and staying away from, you know, processed foods. and sugars and things that are essentially, you know, manmade. Um, it just, it just, there's no arguing it, you know, she just hits these points and that makes sense. Yeah. It just makes perfect sense.
And, you know, I think before this, it wasn't that I wasn't, I was, I wasn't eating clean. I've always had like, you know, um, We ate pretty good because, you know, we were athletes and we kind of learned how to eat through, you know, college and high school and stuff. But the focus is definitely more on cleaner foods for sure. Amanda, give me the background of who she is and how she discovered that. Yeah, so Terry Walls is a woman who had MS. She still has MS. But
she had progressed a lot. She was wheelchair -bound. And so she decided to try to change her MS with her diet. So she started eating. It's kind of like paleo. It's really focusing on vegetables and, like Eric said, those grass -fed organic meats. So she started changing her diet and noticed a huge improvement in her mobility, everything. So she's out of her wheelchair now. She's doing really well. And she recommends this diet for a lot of people with MS. Now, we don't know how
it affects people with ALS. And like Eric said, it makes sense. It's so important what you're putting into your body. So we're giving it a try. And it's like he talked about, it keeps the inflammation down. And I don't know, I think I feel better. I'm not like as bloated. I don't ever feel like I'm so full. Like sometimes, you know, after you eat a huge meal, you feel disgusting. So I haven't had that feeling in a really long time. So I don't know. And maybe it's just a
little bit mental for us, too. It's just, you know, knowing that you're putting really good things into your body to help you. So, yeah, that's something we've been trying. We've been doing it for a few weeks now. It's hard, though. It does take a lot of planning and a lot of work. But it's kind of like our job to eat healthy now to help him. Yeah. And again, as far as getting people angry, I just interviewed the guy that made the Game Changers movie. And there's some
to and fro between the two sides. But again, the middle ground is voting with a dollar if all food was organic again. All animals were not locked in some factory and keep kept alive by antibiotics until they could slaughter their dirty meat because they're so sick. If we had all the same type of foods and farms that our great grandparents had, then it would be cheap and it wouldn't be hard for you. Every store would have it. But that's the problem at the
moment is people have to look. We're lucky in Florida because we're surrounded by lush farmland. So it's a lot easier, I think, than, you know, obviously California's desert, really. But there's no reason why if we did it for thousands and thousands of years, why everyone thinks it's insanity that we can't go back to that. Well, you don't even have to say, is that organic? We talked before recording as well, and I've
talked about this a lot. the fact that they're wearing hazmat suits spraying our food and then we have all these people getting these weird and wonderful diseases i mean that in itself is no question there has to be a correlation you know so yeah so i think i mean you know i don't think it's a placebo i think it just is common sense you're asking your food to not be messed with simple as that right it really is yeah another thing that we're doing it it's um
It's called The Medical Medium. It's by Anthony William. Eric starts his day with a 16 -ounce glass of celery juice on an empty stomach. And in his book, he just talks about how it really helps your body kind of clear those toxins and just give your body a fresh start for the day. And it is really important that it's fresh celery juice and right on an empty stomach when you wake up. We bought a juicer and we've been doing that, or he's been doing it. I tried it, but
I just can't do the celery juice by itself. But he does it every morning. Yeah, I actually really like celery juice. So I don't mind it. I actually look forward to it. Well, I started doing, I had Stan Efferding on the show, who's a bodybuilder, powerlifter, they call him the Rhino, but he's big on nutrition. He's got the vertical diet. Have you ever seen that? Anyway, but one of the things he talked about, there's this complete aversion to salt. And you live in a place where
it's very hot and you sweat a lot. I do as well. And so his first thing in the morning is a big glass of water with lemon juice and a little bit of salt in it. And I started doing that, and it's kind of the same thing. Initially, it's not. I mean, it's actually not bad, but it's
a little salty, which is kind of weird. But you do, it's like if you've been processing all the toxins and everything in your body, and then you give a big tall glass of water with that as the first thing you do, then you're hydrating and you're putting those minerals back in your body. So again, sense, it just makes sense. Right. For sure. All right, so the same question, but a movie. Eric, first, what's your favorite movie? Oh, gosh. I like Legends of the Fall. Legends
of the Fall? Yeah. Brad is pretty hot. Yeah, he gets me every time. No, I really like Montana. It's just the setting of that movie is incredible. And it's about brothers and a little bit of a
love story. you know one brother goes to war and the other three brothers go with them or the other two brothers go with them and kind of protect him the whole time you know but yeah I don't know that movie's just been I watched it when I was like in 8th grade and I think it's been my favorite movie ever since Yeah, it was a good film. Yeah. Was Anthony Hopkins in that too? Yeah, Anthony Hopkins. Yeah. Grumpy old bastard. Yeah, yeah. He's a grumpy old colonel.
Yeah, the whole setting is just awesome. It's beautiful. Yeah, absolutely. So, Amanda, same question. Oh, gosh. I'm like sitting here freaking out because I don't even know. There better be a good one. What? I don't know. What's my favorite movie? I don't know. This is one of your favorites. Just one that you would recommend to people. One that you've seen that you liked. Oh, man. I feel like we haven't seen a good movie in a long time. I feel like they just don't make movies
like they used to. I don't know when the last really good movie came out. I know. I'm honestly trying to think of a movie that... Oh, gosh, no. I can't spit my words out then. What about a documentary? Is there a documentary you remember seeing that you were struck by? I'm trying to think. The only documentary I think we've seen that we probably both watched was Blackfish or something. The one with the orcas, yeah. Oh, man, I'm not good at these questions. That's
a great point again. people arguing like from the sides in the middle ground is do you honestly think a killer whale is supposed to live in a swimming pool right it's a simple freaking question right of course it's not this is a mammal that you know goes if it's a mammal or fish i'm not sure but you know it goes thousands of miles in the in the wild so yeah i honestly don't we don't watch tv that much you watch a lot of documentaries yeah i'm trying to think It's like we haven't
watched TV, I feel like, in four months. We've been so busy. You've been on TV more than you've watched it. Yeah. I mean, it's been. That's the only time we watch it. We never really were like, we never watched a lot of TV to begin with. And now we really haven't. I mean, you could see the size of our TV. That used to be a big TV not too long ago. Now that's like you sit in the back of the plane seat in that thing. Exactly. We watch a lot of like Planet Earth before bed.
Oh, yeah. That's a great show. That's like our go -to. All right. That's lots of good. Yeah. I know. I wasn't prepared for these questions. No, no problem. They catch people out. So I'll give you a different one. Is there a person that you would love to recommend to come on this podcast to speak to first responders, military? Medical community. Human beings. While you're thinking, I'd love to get Ellen on one day. I think she'd be awesome. She does so much for the fire service.
Yeah, I was going to say her, actually. Yeah, get Ellen on here. Ellen would be amazing. She told us over and over how much she loved firefighters. Yeah, she's a huge, huge supporter. And I think like a few days before she had us on, she had... I'm pretty sure it was the fire station that saved her house during the fires. It was like 10 firemen? Yeah. Yeah, I remember seeing that as well. And when we were first talking to the producers to go on to the show, they just kept
saying, you know, Ellen loves firemen. You know, she loves firefighters. And, yeah, so. She definitely made that very clear. She would be very cool to have on here. She'd never know. I mean, if she does, this is the way to talk to them. But I actually saw her show. I used to live in Burbank, and I went to the live show one time. Oh, nice. Not as a guest, just as watching. All right,
well, we'll move on. The last thing before we really go into where people can reach you and how they can help, what do you do to decompress? To Usar. Well, so I used to be working out, running, surfing, mountain biking. I spent a lot of time fishing. I spent a lot of time in the outdoors. But all those things I named have become a lot more difficult for me. And they also say if you work out too hard or too much, it could increase the progression. So I've had to kind of step
back and take it easy. And that could even be the inflammation side again, huh? Exactly. Yeah. So the sauna, we got a sauna donated to us. So that's been huge. Just being able to go in there and break a sweat. I used to. It has been great, but I still like going outside, take our dog to the beach and walk on the beach and looking at the surf and stuff. My brother and I will paddle out, but I can't really stand up anymore.
And that's got to be a little daunting being in the water, not having the... ability that you had before for sure that's been that's been one of the most difficult things is that you know i was so active um before and um not being able to do that is is is hard mentally too and i'm also you know i'm kind of nervous to to try things because i don't want to fail you know and then it's a reminder that I have this and you know this is kind of the way I'm declining
you know so I see yeah so I just try to take it easy um I like when we have time you know reading or um going to the sauna walking walking the dog that's kind of what um what I've been doing recently. Have you tried yoga? Yeah, yoga. We do yoga every once in a while. Probably not as much as we should. I mean, I really like yoga, especially like core power where you're in that flow kind of yoga. But we just don't do it enough.
I think we should do it more for sure. Because again, the meditation element to it as well, the positive affirmations and all that. Yeah, I'm a huge believer in yoga for sure. I used to do it when I played football. I mean, it just helps having clarity, flexibility, injury prevention. And you break a sweat, you feel good, and it's just everything about it is positive. Yeah, absolutely. Amanda, same for you, decompress. Oh, man. I like to read a lot. So I'll do a lot of reading.
Taking our dog for long walks. There's like a back bay by our house. So I like to take him on long walks through there and usually listen to music or podcast or kind of just let my mind escape from all this or try to. I've only been in the sauna once. I don't know. It's hard for me to sit there for that long. So I don't do that that much. At least you don't have to put up with 50 -year -old obese men taking the towel off their junk and just sitting there like some
of the gyms I've been to. Seriously. She still teaches soccer, so she does soccer lessons, I
feel like. and and you work out you know she does orange orange theory you ever heard of that yes yeah so we go in different zones yeah so we were actually doing that quite a bit um together um before this all happened but so yeah but it's still i haven't done it in a while because it just like mentally i can't get into it i don't know it's too hard for me right now but um Yeah, I would just say a lot of reading and, I don't
know, this keeps us pretty busy. I don't know, I guess I've been doing a lot of cooking, trying to try different meals for us to eat. So that's been fun. Yeah, we go to the beach a lot. We like to take our dog to the dog beach down in Newport and just kind of run around with him there. And honestly, he helps a lot to our dog with just like, I don't know, he's decompressed with him. He's just like so happy to be around. So the dog we're talking about, is that the one
right by the bridge? Yeah, that's right where my friend I was visiting. Their house is like half a block back right by there. So you've probably
even seen their dog. probably yeah we go there a lot our dog loves it he loves the water and he'll like go in the water and then run out and roll in the sand and it's like the whole day yeah it's like a whole day process because he's so dirty after but he loves it and yeah we we love going to the beach so very healing place yeah all right so then let's talk about first so so um what can people do to try and put pressure on speeding this process up have you found any
avenues people the right to organizations to support anything like that so what we've been doing um we we we just got back from dc so we talked to over a dozen congressmen senators um spoke to a few people in the hss um fda and um basically told them our story and and told them what's going on and and this is this is what's happening you know and i don't know if you guys are aware of it but you know this is this is happening to me and it's also happening to over
30 000 american um and every everyone we talked to Their jaws dropped and they couldn't believe it. So we got a lot of people on board and we're
going to continue to do that. And I think the more people that we raise this awareness to and the more people that talk to their local congressman or senator or... write letters to the fda or to to um you know people that could really make a change is is going to help uh significantly um yeah i think um one thing we learned in washington dc when we went is they just formed I think on the House side, so the congressmen and ALS caucus were. Oh, really? Yeah. And so that's kind of
been our big push. Any congressmen that we talk to, we just ask them, will you please join the ALS caucus and kind of help us in this fight? And so I think if people wanted to help, it would be to reach out to their local congressmen or senators. I'm pretty sure they started one on the Senate side also. Annoying. Sorry, Chuck. Selfish firefighters with the sirens. But, yeah, we're just asking them to join the ALS caucus and kind of be behind us in this fight or lead
the fight. I mean, they have more power than we do, obviously. And I think it's working, you know. Just the other day, Senator Braun asked the commissioner. of the FDA, the new commissioner, about ALS and how he plans to attack this, you know, terminal diagnosis with no treatment options and limited availability to ALS patients. So, and that was huge. That was the first time anyone's ever done that. So it's working, you know, what we're doing and what other ALS advocates are
doing in D .C. is helping out. And the more and more people that get on board and help with this cause, the greater effect we're going to have. And so I think people always ask, you know, what is it that we can do to help? Well, just spread the word, spread this story. And share to as many people as you can. And join us, you know. Join us in this fight. It's really a fight for hope, you know. And the more people we have with us, the bigger impact we're going to have. And
they can literally share their story. There's going to be a link. You just put it on your Facebook page or email chain or whatever. And I think that's what I love about the podcast thing is you can't listen to you guys talk and then walk away and be like, we're invested now. And for everyone listening, I make sure this is a completely free resource for everyone. So in return for this one, I hope that people will just take a
moment and do that, share. And if they do know any people in the political world, reach out to them, but also just get everyone around you.
fired up and educated exactly and and people are it it's um it's been amazing the support and the feedback that we're getting back and people are so willing to help out and and people are fired up because it's there's there's something wrong with what's going on and you know i'm no politician but i do know right from wrong and this is this is freaking wrong And something's got to change. Yeah, absolutely. All right, so on the other side, the GoFundMe, where can people
find that? Yeah, they can find the GoFundMe on our website. It's stevensnation .com. And there's a link on there that says, you know, donate now. So that's where they can find the GoFundMe. I'm
amazed you're able to get that website. Having got one myself and knowing how they're all bought by GoDaddy and all these other... turds yeah that's good i'm glad you got that yeah we've had a lot of help with everything man yeah we could not have done this without the people who helped us with the website and and everything so yeah it's brilliant but then again you know that's the other side of the coin i think so many people want to help i think people i truly
believe people inherently good there's some pieces of shit out there we all know them but um And they just need to know how. They need to be led, you know. So everyone listening, you know, if you're looking to do something good in the world today, then go to the website and donate and share the word, you know, and axe ALS, as they say. Yeah. Awesome. Right. Well, I want to thank you so much. It's been an hour and a half conversation. I'm honored that you allowed me, this complete
stranger, weirdo Englishman, in your home. But I truly hope that this makes a difference. Thank you. Yeah, thanks. Thanks for coming. And we really appreciate you helping us to spread the word because that's ultimately what's going to lead to change. So we really appreciate you. Yeah, thank you for having us.