WEBVTT

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This episode is brought to you by 5 .11 Tactical

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alternative to the tactical boot, to the AMP

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in there as well. The Response XR2 flashlight,

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extremely light or torch, as I would say in England.

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light I've ever seen in my life. Not only is

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it great for illuminating things, it actually

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would have a great self -defense element to it

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as well because it's literally blinding. So not

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rated specifically to go into structure fires,

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but every other element of our job is a great

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before, use the code SHIELD, S -H -I -E -L -D,

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December 1st, and the rest of the year, Shield

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15 will still get you your 15 % off. Welcome,

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guys, to episode 256 of Behind the Shield podcast.

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As always, my name is James Gearing, and this

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week I am extremely excited to bring to you Eric

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and Amanda Stevens. Now, Eric was a college football

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player. He entered the NFL and ultimately transitioned

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into the fire service. And when he and Amanda

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were about to get married, Eric discovered that

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he had ALS, Lou Gehrig's disease. So I sat down

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with both of them to hear their journey, how

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they met, Amanda's journey through collegiate

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soccer, and ultimately the diagnosis, and then

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the painstaking realization that there are treatments

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out there that are working that ALS sufferers

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cannot access at the moment. So you're going

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to hear this. It's going to really move you,

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but I urge you to take the moment to go to their

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website. There is a GoFundMe. Of course, there

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is a... contribution element to this. The ALS

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patient has a need for certain medical equipment

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that may or may not be covered by the insurance

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but the other side of it is helping push the

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treatment to be released by the FDA. and made

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available to these men and women that are suffering

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from ALS that will truly save their lives. So

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please listen to this episode and then go to

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their website. The links will be on the webpage

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for this podcast. So jamesgearing .com and then

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go to the podcast episode 256 and you will see

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all the links that you need to go to. So as I

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always say, before we get to the episode, take

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a moment, go to your podcast app, subscribe to

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the show, rate the show. Five -star rating makes

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us even more visible to people that need to hear

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this. And this particular episode, everyone needs

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to hear this. We need to be made aware that this

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disease is... Currently suffered by 30 ,000 Americans.

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And that's just our country. That's not including

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all the other countries around the world. And

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then the other side is take your social media,

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word of mouth, email chain, whatever you need

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to share these episodes and get these stories

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to everyone that needs to hear it. So with that

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being said, I introduce to you Eric and Amanda

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Stevens. Enjoy. Eric and Amanda, thank you firstly

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for welcoming me to your home. For people listening,

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where are we sitting right now? Thanks for coming.

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We're sitting in my wife and I's home in Costa

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Mesa, California. Brilliant. Beautiful city.

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Alright, so I'd love to start at the very beginning.

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We'll kind of go person by person. So Eric, you

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first. Where were you born and what was your

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family unit like? I was born in San Pedro, California.

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So that's like the Los Angeles Harbor area. My

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dad was a police officer. My mom was a phlebotomist.

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So we're blue -collared, middle class. And I

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was the youngest of four brothers. Brilliant.

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All right, Amanda. Same for you. I was born actually

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down here in Pomona, California, but moved up

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north to Danville. I'm the middle child, so I

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have an older brother and a younger sister. Yeah,

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and then I just moved back down here to be with

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Eric, and my family followed. So now we're back

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in Southern California. Brilliant. Brilliant.

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Okay, so staying with you then. When you were

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young, were you an athlete? Did you love sports?

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Yes, I started playing soccer when I was probably

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four or five years old and played through, you

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know, middle school, high school and college.

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And yeah, that's where I met him. So soccer kind

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of led me to him. Okay, yeah, I figured that

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was probably the case. So Eric, obviously I know

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that you were a football player. What was your

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kind of journey through that sport? Well, growing

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up, I started playing soccer, basketball, baseball.

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And some of my really good friends, they were

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playing Pop Warner football. And my dad didn't

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let any of my brothers play football. So I kind

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of had to beg him and just hope that he would

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let me play. And he did. He finally let me play

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when I was eight years old in peewee tackle football.

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And we were really good. We had a really good

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team. And we stayed together all the way up to

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high school. And after my dad let me play, he

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let my other brothers play. They were a little

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bit older. Already in middle school and high

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school. But one of my older brothers, Craig,

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went and played at Cal. And he went on to play

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in the NFL, too, for 10 years. So I got to see

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and watch him and see what football did for him,

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where it got him. really my motivation to keep

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playing. And so I kind of followed his footsteps

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and played different positions. But I went to

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Cal too, played fullback there. And that's where

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I met my wife, Amanda. And after Cal, I had a

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short stint with St. Louis Rams. I was on the

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practice squad for a while, got cut, signed,

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kind of bounced around a little bit. And I just,

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I realized this is, you know, this is not what

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I thought it was going to be like. And I didn't

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know if I was going to have a job the next morning

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or what was going to happen, you know. So, I

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mean, Amanda and I were doing long distance too,

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so. I wanted to come back home and find something

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a little more steady. And my other two older

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brothers are firefighters for LA City. And my

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uncle was an LA City firefighter as well. So

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I've always wanted to be a firefighter. And it

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was just a matter of time. And I felt the timing

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was right. The last time I got cut, I called

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my dad, I called Amanda, and I just said, hey,

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you know, I'm ready to come home, ready to start

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a new career. And that's kind of how football

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ended and how I started going towards the fire

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department. Brilliant. Now, just to go back to

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something you said. So, you started at eight

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and you were with that same team for 10 years?

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Yeah. Yeah. So, we stick together until high

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school. And then we had two different high schools

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in our local area. And so, some of us went to

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one high school, some of us went to the other

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one. So, we split up and it was unfortunate.

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Neither high school was very good. But if we

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were together, I mean, I think we would have

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been pretty good. Brett, now what do you think

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physically and mentally separated you from other

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people that allowed you to play at that high

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level? Yeah, I think I've always been super competitive.

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And being the youngest of four brothers also,

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I think, helped too. I'm sure. I feel like I

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was always trying to prove myself and always

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trying to keep up with my older brother. So I

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always kind of had that. That gave me the advantage,

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you know, because I'd be. you know, wrestling

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or, you know, playing in the backyard with my

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brother and their friends who were two years

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older than I was. So when I would go play with

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people, you know, kids my own age, I was kind

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of on another level, you know. So it definitely

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really helped me. And I got to kind of see and

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learn from them and what mistakes they made.

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I've always been kind of a visual learner, so

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I've always watched my brothers and just learned

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from them, constantly learning. Brilliant. Now,

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with your career, I read somewhere that you injured

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your knees at some point. What was the injury

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and how were you able to rehab that? I did. So

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this is my sophomore. Somewhere you're going

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into my junior year of Cal. I was the top -ranked

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fullback that year. And your junior year is a

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real big year as far as, you know, as far as

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getting tape for the next level NFL and film.

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It's a really big year. It kind of sets up your

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senior year. Actually, the first day of pads

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in fall camp going into that season, my foot

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got caught in the turf funny, and I was going

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out for a pass, and it just tweaked funny, and

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I fell back. Popped it and I tore my ACL. Oof.

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Yeah. And my ACL and meniscus. Okay. And the

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rehab, it's a long rehab. Six months minimum.

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The trainers and staff were awesome though. And

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we just stayed on top of it. And I just had next

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year on my mind. You just have to keep the...

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Yeah, you have to keep that in mind as far as

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working towards that goal, knowing that you have

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another year, knowing that the team still needs

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you. And that's kind of what I did, and that's

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what motivated me to get back to my teammates

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and my coaches. Right, because you were the captain

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at Cal, is that right? I was my senior year.

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Senior year, okay. yeah so all right well amanda

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let's go to you so you said you played soccer

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lead me in through your college career and how

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you guys met okay um yeah i got recruited from

00:13:36.659 --> 00:13:41.340
cal my junior year of high school um so i committed

00:13:41.340 --> 00:13:45.539
kind of early and went in my freshman year and

00:13:45.539 --> 00:13:49.100
actually blew my knee out too um so i had to

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redshirt my freshman year at cal um But like

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Eric just said, you know, the trainers there,

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the coaches, they're all so supportive and they

00:13:57.269 --> 00:14:00.070
work hard to get you back and you just try to

00:14:00.070 --> 00:14:05.529
keep that positive mindset and attitude. So I

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played sophomore, junior, senior year at Cal

00:14:08.690 --> 00:14:12.610
and I was captain my senior year as well. A couple

00:14:12.610 --> 00:14:20.509
of overachievers. We got to the NCAA tournament

00:14:20.509 --> 00:14:24.110
every year I was there. I don't know, I feel

00:14:24.110 --> 00:14:26.250
like there's this curse against us where we can't

00:14:26.250 --> 00:14:31.009
get past the second round. But still, my senior

00:14:31.009 --> 00:14:33.809
year was probably one of their best seasons in

00:14:33.809 --> 00:14:37.090
a long time. We had like 16 wins or something,

00:14:37.210 --> 00:14:42.429
which is something that the program, they don't

00:14:42.429 --> 00:14:47.049
get that many wins that much. But yeah, Eric

00:14:47.049 --> 00:14:55.649
and I met my sophomore year at Cal. We kind of

00:14:55.649 --> 00:14:57.870
knew of each other because he was a year older

00:14:57.870 --> 00:15:00.629
and hung out with a lot of the soccer girls his

00:15:00.629 --> 00:15:05.350
year. And so we knew of each other just through

00:15:05.350 --> 00:15:08.669
mutual friends. And I think we might have ran

00:15:08.669 --> 00:15:11.649
into each other one time before we actually officially

00:15:11.649 --> 00:15:16.259
met. I was walking up the street and he was walking

00:15:16.259 --> 00:15:19.500
down. It was after the big game. So Cal versus

00:15:19.500 --> 00:15:24.500
Stanford. I think Cal lost. Yeah, we lost. We

00:15:24.500 --> 00:15:29.419
lost pretty bad. But I stopped him because I

00:15:29.419 --> 00:15:32.899
kind of knew him and just gave him a hug. And

00:15:32.899 --> 00:15:36.519
he invited me to a party later that night. And

00:15:36.519 --> 00:15:40.139
so I went. And then, yeah, we've been dating

00:15:40.139 --> 00:15:43.289
ever since. Now we're married. We've been together

00:15:43.289 --> 00:15:45.389
ever since. Brilliant. So we're going to get

00:15:45.389 --> 00:15:46.870
to the fire department again in a second. But

00:15:46.870 --> 00:15:50.210
as far as career, what about your path? So after

00:15:50.210 --> 00:15:53.330
Cal, I went to St. Mary's actually and played

00:15:53.330 --> 00:15:56.570
my fifth year of soccer there while I got my

00:15:56.570 --> 00:15:59.549
teaching credential and my master's. So I'm a

00:15:59.549 --> 00:16:02.309
second grade teacher right now in Costa Mesa

00:16:02.309 --> 00:16:06.610
where we live. And I've been at this school for

00:16:06.610 --> 00:16:10.440
four years now. I love it, yeah. I've taught

00:16:10.440 --> 00:16:12.779
second grade and fifth grade, but I think second

00:16:12.779 --> 00:16:17.279
grade's where I belong. Yeah, the little ones.

00:16:17.440 --> 00:16:19.539
Now, is there anything, I actually had a teacher

00:16:19.539 --> 00:16:23.500
on a couple weeks ago, and anything that I think

00:16:23.500 --> 00:16:24.799
we can do better, if we can learn from other

00:16:24.799 --> 00:16:27.720
countries, for example, I try and discuss it

00:16:27.720 --> 00:16:30.279
on here too. On your perspective, what are the

00:16:30.279 --> 00:16:32.240
things you think that we do well and some things

00:16:32.240 --> 00:16:35.399
that we could improve on in education? Yeah,

00:16:35.399 --> 00:16:39.200
I think... What my school and just, you know,

00:16:39.200 --> 00:16:41.120
through my teaching program, what we really focus

00:16:41.120 --> 00:16:45.480
on is just differentiating the instruction to

00:16:45.480 --> 00:16:49.480
really target each student. I think, you know,

00:16:49.480 --> 00:16:53.620
you can't just teach to the whole class. It really

00:16:53.620 --> 00:16:57.919
has to be differentiated for the group of students

00:16:57.919 --> 00:17:03.200
that you have. And I think, like, I use a lot

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of hands -on. activities or lessons to really

00:17:07.539 --> 00:17:10.160
keep them engaged. I think that's a really hard

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thing as kids are at school all day long and

00:17:12.460 --> 00:17:15.220
you need to keep them focused and engaged and

00:17:15.220 --> 00:17:17.799
having fun or else they're not going to want

00:17:17.799 --> 00:17:21.680
to be there. So I know my partner teacher and

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I in second grade, you know, it's a lot of addition

00:17:24.440 --> 00:17:28.200
and subtraction and just working on like sentence

00:17:28.200 --> 00:17:30.079
structure and things. So we try to make it really

00:17:30.079 --> 00:17:33.940
interactive for. And I think that helps them

00:17:33.940 --> 00:17:37.480
learn is just being engaged and having that hands

00:17:37.480 --> 00:17:40.359
on experience. So that's something we try to

00:17:40.359 --> 00:17:44.920
do. And I think it's helping. But yeah, we just

00:17:44.920 --> 00:17:47.859
started a new kind of curriculum a few years

00:17:47.859 --> 00:17:49.940
ago. It's called the Common Core, where it's

00:17:49.940 --> 00:17:54.940
not really memorizing, but more really explaining

00:17:54.940 --> 00:17:57.920
your thinking. So it's not just like five times

00:17:57.920 --> 00:18:02.579
three is 15, but kind of why that is. The answer

00:18:02.579 --> 00:18:05.220
not. So it's not really so much about the answer.

00:18:05.279 --> 00:18:08.339
It's how you get the answer. Yeah. So that's

00:18:08.339 --> 00:18:12.579
difficult. That's hard, though, for kids to grasp.

00:18:12.839 --> 00:18:15.380
So that's been a challenge. It's hard for parents

00:18:15.380 --> 00:18:16.799
to grasp. Yeah, I've heard. I've seen some pretty

00:18:16.799 --> 00:18:19.079
funny Common Core memes. Like, you know, I'm

00:18:19.079 --> 00:18:20.880
just helping my kid with his homework. Apparently

00:18:20.880 --> 00:18:24.339
one chair and a badger equals Venezuela. Yeah,

00:18:24.339 --> 00:18:27.859
yeah. I know. Sometimes we'll have to look at

00:18:27.859 --> 00:18:30.000
the teacher guide like, oh, goodness, I don't

00:18:30.000 --> 00:18:33.539
even know the answer to this. It's sad. I was

00:18:33.539 --> 00:18:36.480
embarrassed how young my son was where I'm like,

00:18:36.559 --> 00:18:39.240
you're going to have to ask someone else. I'm

00:18:39.240 --> 00:18:41.819
going to make it more confusing for you. I know.

00:18:42.240 --> 00:18:43.920
All right. Well, speaking of education, we'll

00:18:43.920 --> 00:18:47.160
go back to Eric. Coming from, you know, high

00:18:47.160 --> 00:18:50.559
level athletics, what was the academy like for

00:18:50.559 --> 00:18:53.859
you? The fire academy? The fire academy, yeah.

00:18:53.980 --> 00:19:02.160
Yeah, it was. It was tough, I think. As far as

00:19:02.160 --> 00:19:07.279
physically goes, I felt pretty good because of

00:19:07.279 --> 00:19:13.680
my history of football and athletics. And I was

00:19:13.680 --> 00:19:18.440
fortunate enough to be accepted into the academy.

00:19:20.480 --> 00:19:25.230
You know, pretty close to... Or, you know, pretty

00:19:25.230 --> 00:19:29.410
short after playing football. So, I was in pretty

00:19:29.410 --> 00:19:32.650
good shape as far as physically. But, you know,

00:19:32.670 --> 00:19:37.730
mentally, I think is the hardest part, you know,

00:19:37.730 --> 00:19:43.309
of the drill to our academy. You know, the pressure

00:19:43.309 --> 00:19:46.490
that the instructors put on you and the staff.

00:19:46.869 --> 00:19:51.150
And you're also learning a completely new language,

00:19:51.329 --> 00:19:58.720
you know. That part was difficult. But you have

00:19:58.720 --> 00:20:01.720
your classmates that you lean on and everyone

00:20:01.720 --> 00:20:07.940
works together as a team. And ultimately, you

00:20:07.940 --> 00:20:10.339
know, that's what gets you through it. But it's

00:20:10.339 --> 00:20:15.309
a long... Long, strenuous drill tower for sure.

00:20:15.630 --> 00:20:21.089
How long is LA's? How many weeks? It's five months.

00:20:21.269 --> 00:20:24.210
Five months. Yeah, it's five months. Are you

00:20:24.210 --> 00:20:26.289
certified when you enter that or are you non

00:20:26.289 --> 00:20:30.009
-certified? You're not certified, yeah, so until

00:20:30.009 --> 00:20:32.430
you finish. And then you have a year of probation.

00:20:34.690 --> 00:20:37.990
In the field, you do three different houses.

00:20:39.019 --> 00:20:42.559
So, but, yeah, I mean, Amanda could tell you,

00:20:42.599 --> 00:20:46.500
too. I mean, it's stressful. That's a long five

00:20:46.500 --> 00:20:53.660
months of just grinding out, you know, learning

00:20:53.660 --> 00:21:00.660
a whole new language, sleep. You're up early

00:21:00.660 --> 00:21:03.460
in the morning and home late at night. Especially

00:21:03.460 --> 00:21:07.299
LA traffic. Yeah, exactly. So, yeah, it's every

00:21:07.299 --> 00:21:11.900
day. And studying, memorizing. I think I could

00:21:11.900 --> 00:21:18.319
probably do a lot of the drills or whatever because

00:21:18.319 --> 00:21:21.579
we practice so many times. Yeah. Well, I'm not

00:21:21.579 --> 00:21:25.180
the best public speaker, so I have to memorize

00:21:25.180 --> 00:21:29.539
everything. So I would just give all my drills

00:21:29.539 --> 00:21:34.240
to Amanda and my note cards, and I'd read them

00:21:34.240 --> 00:21:37.950
to her, and she would read them off. She spent

00:21:37.950 --> 00:21:42.950
countless hours helping me. Yeah, I definitely

00:21:42.950 --> 00:21:45.829
couldn't have gotten through without her for

00:21:45.829 --> 00:21:48.329
sure. Yeah, I can relate. I could put the ladder

00:21:48.329 --> 00:21:49.930
up, but I couldn't remember the words I was supposed

00:21:49.930 --> 00:21:51.730
to say while I was putting the ladder up. Exactly,

00:21:51.829 --> 00:21:54.430
yeah. I'll put the ladder up a million times,

00:21:54.569 --> 00:21:59.789
but yeah, it's just when it came to memorizing.

00:22:00.109 --> 00:22:04.339
The monologue. Monologue, yeah. exactly so it

00:22:04.339 --> 00:22:06.140
was interesting as well i had a conversation

00:22:06.140 --> 00:22:09.160
just the other day and we're talking about um

00:22:09.160 --> 00:22:11.640
individual sports and team sports and i forget

00:22:11.640 --> 00:22:13.119
who i was talking to but he'd been a wrestler

00:22:13.119 --> 00:22:16.279
and he played football and i found that with

00:22:16.279 --> 00:22:18.859
a fire service um you know i did martial arts

00:22:18.859 --> 00:22:21.519
and fought and it would be part of a team sometimes

00:22:21.519 --> 00:22:23.980
but it's just you and that other person on the

00:22:23.980 --> 00:22:26.359
mat at that time and that's kind of what it's

00:22:26.359 --> 00:22:28.859
like is we're part of that group but each of

00:22:28.859 --> 00:22:31.319
you have those individual responsibilities so

00:22:31.319 --> 00:22:35.799
you know i think it's it's uh you can glean a

00:22:35.799 --> 00:22:38.740
lot from being an individual athlete and a member

00:22:38.740 --> 00:22:41.059
of a team either of those tracks if you have

00:22:41.059 --> 00:22:44.960
both even better yeah absolutely yeah that definitely

00:22:44.960 --> 00:22:49.619
helped um the transition from being a football

00:22:49.619 --> 00:22:53.279
player to being a firefighter as far as the team

00:22:53.279 --> 00:22:57.839
aspect and everyone has their role um and everyone's

00:22:57.839 --> 00:23:03.390
role is equally important you know um so That

00:23:03.390 --> 00:23:11.809
transition was easy as far as the team aspect

00:23:11.809 --> 00:23:17.250
and knowing your role and being someone that

00:23:17.250 --> 00:23:23.869
you can count on and accountability and trustworthiness.

00:23:24.750 --> 00:23:27.569
That's huge. I'm sorry to interrupt, but what

00:23:27.569 --> 00:23:30.089
about, so you were captain, Caltech, you were

00:23:30.089 --> 00:23:33.440
NFL, now you're a probie. What was that like

00:23:33.440 --> 00:23:35.619
for you? I mean, ego is the wrong word, but,

00:23:35.619 --> 00:23:39.299
you know, for realizing that you're now bottom

00:23:39.299 --> 00:23:45.859
of the pile. Yeah, well, it was, I mean, there's

00:23:45.859 --> 00:23:48.980
times, you know, you just, you want to do something

00:23:48.980 --> 00:23:52.079
or you want to say something, but you know your

00:23:52.079 --> 00:23:55.000
role, you know, and everyone goes through it.

00:23:55.279 --> 00:24:01.200
And it's a rite of passage, you know, you earn

00:24:01.200 --> 00:24:05.049
it through. working hard, keeping your mouth

00:24:05.049 --> 00:24:09.869
shut, and just going to work. And that's what

00:24:09.869 --> 00:24:12.990
I did when I played football, and that's what

00:24:12.990 --> 00:24:17.589
I did as a firefighter too. You know, when you

00:24:17.589 --> 00:24:20.789
play football your first year, unless you're

00:24:20.789 --> 00:24:24.930
a rare exception, you're on the scout team. You're

00:24:24.930 --> 00:24:28.710
at the bottom of the totem pole. You have to

00:24:28.710 --> 00:24:32.210
earn everyone's respect, and you work your way

00:24:32.210 --> 00:24:35.210
up, and that's the same thing as the fire service.

00:24:35.750 --> 00:24:40.269
Start from the bottom, and you earn people's

00:24:40.269 --> 00:24:45.890
respect through hard work and giving everything

00:24:45.890 --> 00:24:53.410
you have. You just, you know, big ears, big eyes,

00:24:53.410 --> 00:24:56.289
and a small mouth, and that gets you through.

00:24:56.700 --> 00:25:00.859
Yeah, absolutely. And which apparatus were you

00:25:00.859 --> 00:25:06.359
assigned to in the end? So we were, on probation,

00:25:06.559 --> 00:25:12.000
you do an engine house, and then for three months,

00:25:12.000 --> 00:25:14.920
I believe, then you do your truck house, and

00:25:14.920 --> 00:25:20.400
then your third house is kind of like your 800,

00:25:20.579 --> 00:25:24.099
what we call, or your ambulance. Oh, okay, rescue.

00:25:24.259 --> 00:25:31.720
Yeah, like the BLS rescue. But we rotate. Our

00:25:31.720 --> 00:25:35.240
department rotates. We rotate engine, engine

00:25:35.240 --> 00:25:39.039
truck. And then I was in a hazmat station too.

00:25:39.140 --> 00:25:43.519
So we also rode the hazmat squad. And we didn't

00:25:43.519 --> 00:25:47.819
have a BLS rescue either. So we were all fire,

00:25:47.880 --> 00:25:51.640
all fire side. We had ALS rescue, but those were

00:25:51.640 --> 00:25:54.180
the paramedics. Okay, so was it separated in

00:25:54.180 --> 00:25:58.319
LFT? Are the ALS rescue medics fire medics or

00:25:58.319 --> 00:26:01.480
are they just medics? So some stations have a

00:26:01.480 --> 00:26:04.420
single function medics or you have a rotation.

00:26:04.799 --> 00:26:10.019
Our medics were single function. It just depends

00:26:10.019 --> 00:26:14.940
on what station you're at. All right, so I guess

00:26:14.940 --> 00:26:18.200
we'll swing it back to you, Amanda, from through

00:26:18.200 --> 00:26:22.460
your eyes during obviously... um leading up to

00:26:22.460 --> 00:26:26.420
the wedding like when did you realize that everything

00:26:26.420 --> 00:26:28.319
wasn't exactly the way it was supposed to be

00:26:28.319 --> 00:26:30.960
and then kind of talk us through you know the

00:26:30.960 --> 00:26:35.960
wedding and then that point yeah so um i want

00:26:35.960 --> 00:26:37.920
to say a few months before the wedding maybe

00:26:37.920 --> 00:26:43.059
around march or april um he would say little

00:26:43.059 --> 00:26:46.039
things about his left hand just feeling kind

00:26:46.039 --> 00:26:49.119
of weak um but we didn't think anything of it

00:26:49.119 --> 00:26:52.140
or you know maybe he like tweaked it when he

00:26:52.140 --> 00:26:53.839
was working out because we were working out pretty

00:26:53.839 --> 00:26:57.880
hard for the wedding um as we all do yeah we

00:26:57.880 --> 00:26:59.819
were trying to get skinny to the photographer

00:26:59.819 --> 00:27:07.099
um so we didn't think much of it um or like if

00:27:07.099 --> 00:27:08.700
there was something in the kitchen i couldn't

00:27:08.700 --> 00:27:10.940
open a bottle i would go give it to him and he

00:27:10.940 --> 00:27:13.119
i would see like he'd maybe try it with his left

00:27:13.119 --> 00:27:15.259
hand and then have trouble so then switch it

00:27:15.259 --> 00:27:19.460
to his right are you left -handed No, no, I'm

00:27:19.460 --> 00:27:25.339
right. Right. Yeah. But didn't think anything

00:27:25.339 --> 00:27:29.759
of it. And then I also remember one day, again,

00:27:29.799 --> 00:27:31.900
after we were working out, we were sitting in

00:27:31.900 --> 00:27:34.940
the car and he's like, whoa, look at my arms.

00:27:34.980 --> 00:27:39.660
And they were twitching really bad. But we just

00:27:39.660 --> 00:27:43.380
thought maybe he worked out too hard or he was

00:27:43.380 --> 00:27:47.180
dehydrated. Yeah, again, we didn't think much

00:27:47.180 --> 00:27:50.509
of it. So and I'm pretty sure it ended up going

00:27:50.509 --> 00:27:56.029
away or maybe not just being that like intense.

00:27:57.450 --> 00:28:02.049
And so he didn't really tell me much more than

00:28:02.049 --> 00:28:04.670
that. Just little things of him saying it out

00:28:04.670 --> 00:28:08.269
loud or me seeing the twitching one time. So

00:28:08.269 --> 00:28:13.410
I didn't think anything of it. And then. We had

00:28:13.410 --> 00:28:17.009
our wedding on July 27th in San Luis Obispo,

00:28:17.009 --> 00:28:19.910
which is kind of like a midpoint because a lot

00:28:19.910 --> 00:28:21.509
of our friends are up in Northern California

00:28:21.509 --> 00:28:24.109
and then a lot of our family lives down here.

00:28:25.809 --> 00:28:28.670
So yeah, it was a perfect day. It was awesome.

00:28:28.750 --> 00:28:32.410
It was really special. And then we went on our

00:28:32.410 --> 00:28:36.589
honeymoon to Montana. Eric's always been like

00:28:36.589 --> 00:28:40.470
an outdoorsy. who had been wanting to go to Montana

00:28:40.470 --> 00:28:43.730
his whole life. So we had a really great honeymoon.

00:28:43.890 --> 00:28:49.269
We went to Yellowstone and Glacier. We did horseback

00:28:49.269 --> 00:28:53.470
riding, fly fishing, whitewater rafting. It was

00:28:53.470 --> 00:28:57.029
great. And again, he didn't tell me anything

00:28:57.029 --> 00:29:02.109
and I didn't notice anything. And his brothers

00:29:02.109 --> 00:29:04.589
and his dad... you know, would talk about his

00:29:04.589 --> 00:29:07.569
speech sometimes, but I talked to him every day

00:29:07.569 --> 00:29:10.809
and he's always been somewhat of a mumbler. So

00:29:10.809 --> 00:29:15.150
again, I just didn't really notice because I'm

00:29:15.150 --> 00:29:18.970
talking to him all the time and it just wasn't

00:29:18.970 --> 00:29:23.210
something that I really realized. So it wasn't

00:29:23.210 --> 00:29:26.289
until we got back from the honeymoon when he

00:29:26.289 --> 00:29:30.849
showed me the twitching in his arms. And what

00:29:30.849 --> 00:29:32.910
did that start? Maybe during the honeymoon or?

00:29:33.720 --> 00:29:36.599
That twitching? Yeah. Yeah, I mean, it was before

00:29:36.599 --> 00:29:40.700
that. Yeah. Yeah, I think it definitely progressively

00:29:40.700 --> 00:29:44.180
got worse. Yeah, so just interject then. So from

00:29:44.180 --> 00:29:46.880
your internal experience, when were you noticing

00:29:46.880 --> 00:29:50.740
it? Yeah, I was maybe probably low before March.

00:29:51.680 --> 00:29:59.059
I was at work, and I just, I noticed, you know,

00:29:59.440 --> 00:30:03.240
We'd go to a fire, and I'd just be more fatigued

00:30:03.240 --> 00:30:10.059
than usual and run up to seeing her call, and

00:30:10.059 --> 00:30:13.720
I'm already out of breath, and I'm trying to

00:30:13.720 --> 00:30:18.859
catch my breath. I'm like, man, this is weird.

00:30:19.059 --> 00:30:22.880
I must really be getting out of shape, and I'm

00:30:22.880 --> 00:30:26.099
29 years old, and all the older guys are like,

00:30:26.119 --> 00:30:29.740
yeah, hey, kid. Wait until you're in your 40s

00:30:29.740 --> 00:30:33.180
or in your 30s. You're really going to feel it.

00:30:33.779 --> 00:30:36.619
This is what all the guys are talking about.

00:30:39.039 --> 00:30:44.839
I started dropping tools, mainly in my left hand,

00:30:45.079 --> 00:30:50.980
picking up a saw. It was becoming difficult dropping

00:30:50.980 --> 00:30:57.170
wrenches while I was working out. I noticed.

00:30:57.650 --> 00:31:03.450
I was dropping dumbbells, slipping out of my

00:31:03.450 --> 00:31:07.289
hand, and I'd go up to do pull -ups, and just

00:31:07.289 --> 00:31:12.630
my left hand would slip out. And like Amanda

00:31:12.630 --> 00:31:16.490
said, I've always been sort of a mumbler, but

00:31:16.490 --> 00:31:22.990
guys at work, my dad, my brothers, noticed my

00:31:22.990 --> 00:31:28.819
speech becoming... slurred or slow and i noticed

00:31:28.819 --> 00:31:33.579
that too um but i really didn't think anything

00:31:33.579 --> 00:31:40.440
of it and it did slowly get worse um and our

00:31:40.440 --> 00:31:44.259
wedding was coming up too so we're our main focus

00:31:44.259 --> 00:31:48.039
was the wedding and i didn't want to bother anyone

00:31:48.039 --> 00:31:52.420
or create unnecessary stress if if it was no

00:31:52.420 --> 00:31:56.279
big deal I just figured it was an old football

00:31:56.279 --> 00:32:02.339
injury or something. But every now and then I'd

00:32:02.339 --> 00:32:04.839
go on Google, I'd search, you know, some of these

00:32:04.839 --> 00:32:08.400
symptoms I was feeling or having, and ALS kept

00:32:08.400 --> 00:32:15.220
popping up. And I didn't really believe it, you

00:32:15.220 --> 00:32:18.640
know, at first, but as kind of time went on,

00:32:18.680 --> 00:32:24.220
weeks or days, I would just continue to search

00:32:24.220 --> 00:32:27.400
and do more research. And I just started hitting

00:32:27.400 --> 00:32:31.559
every single box. And that was probably right

00:32:31.559 --> 00:32:36.519
before our wedding. And then, so we had our wedding,

00:32:36.579 --> 00:32:40.059
went to our honeymoon, like Amanda said. And

00:32:40.059 --> 00:32:45.119
as soon as we got back, I think the day we got

00:32:45.119 --> 00:32:50.200
back, I said, you know, hey, Amanda, this is,

00:32:51.099 --> 00:32:54.160
This is what I think might be going on. I'm checking

00:32:54.160 --> 00:32:58.660
every single box, and I know it's extremely uncommon,

00:32:59.019 --> 00:33:03.539
especially for someone my age. But it's just

00:33:03.539 --> 00:33:11.579
the symptoms are just too close and too exact

00:33:11.579 --> 00:33:15.339
to everything I'm reading. So we need to see

00:33:15.339 --> 00:33:21.759
a neurologist right away. family doctor and just

00:33:21.759 --> 00:33:24.819
went straight to a specialist. Good idea. Yeah.

00:33:25.299 --> 00:33:27.559
Cause it, yeah, as you know, it's just a long

00:33:27.559 --> 00:33:29.819
process, you know, it's like you gotta wait three

00:33:29.819 --> 00:33:32.460
weeks to get an appointment and then three more

00:33:32.460 --> 00:33:35.420
weeks to get an MRI and then another two months

00:33:35.420 --> 00:33:38.319
to get another MRI. So I'm like, you know what,

00:33:38.380 --> 00:33:41.920
let's skip all that and let's just go straight

00:33:41.920 --> 00:33:45.660
to it. I think I know what's going on. I'm obviously,

00:33:45.700 --> 00:33:49.619
I'm hoping it's not, but. In the back of my mind,

00:33:49.759 --> 00:33:57.880
I have this feeling. And so we got an appointment

00:33:57.880 --> 00:34:01.339
as soon as we can with a neurologist, and we

00:34:01.339 --> 00:34:05.700
got an MRI, and they do what's called an EMG,

00:34:05.720 --> 00:34:13.199
which shows your nerves and nerve activity within

00:34:13.199 --> 00:34:18.579
your limbs and your neck, your back. And the

00:34:18.579 --> 00:34:23.739
MRI looked good. And when we went back in to

00:34:23.739 --> 00:34:27.559
discuss the MRI is when I got the EMG done. And

00:34:27.559 --> 00:34:35.500
as we're waiting for the EMG results, it's probably

00:34:35.500 --> 00:34:41.119
like 30 minutes or so, the doctor doesn't say

00:34:41.119 --> 00:34:42.860
a word to us. We're just sitting in the room

00:34:42.860 --> 00:34:46.980
with him, and he's typing on his computer. Doesn't

00:34:46.980 --> 00:34:50.260
even look at us, you know, for probably about

00:34:50.260 --> 00:34:53.860
a half hour. And I'm just like, hey, doc, you

00:34:53.860 --> 00:34:56.639
know, everything looking okay or what's going

00:34:56.639 --> 00:35:01.300
on? And just no response, very short. And he

00:35:01.300 --> 00:35:05.960
turns around and it's probably about 40 minutes

00:35:05.960 --> 00:35:10.239
now. And he goes, well, I think you have ALS.

00:35:10.719 --> 00:35:15.969
He goes, I'm sure you guys heard of it. Lou Gehrig's

00:35:15.969 --> 00:35:19.429
disease you have a two to five year life expectancy

00:35:19.429 --> 00:35:25.550
and um that was it pretty much he's like good

00:35:25.550 --> 00:35:30.409
luck and you know we'll see you later and he

00:35:30.409 --> 00:35:34.469
left the room so we were in the room with him

00:35:34.469 --> 00:35:38.789
for probably about an hour he said maybe five

00:35:38.789 --> 00:35:43.010
words and that was you have ALS you know and

00:35:43.010 --> 00:35:45.780
good luck You know, that reminds me, I had a

00:35:45.780 --> 00:35:49.599
widow of a firefighter who died of cancer. It

00:35:49.599 --> 00:35:52.579
was the same thing with them. Doctor goes, yeah,

00:35:52.659 --> 00:35:54.039
you got it. It's terminal. You're probably going

00:35:54.039 --> 00:35:56.639
to die, you know, this amount of time. And pretty

00:35:56.639 --> 00:35:59.699
much was like, all right, there's a door kind

00:35:59.699 --> 00:36:01.760
of thing. And that's, you know, we talk about

00:36:01.760 --> 00:36:04.179
bedside manner and you hear this. And again,

00:36:04.219 --> 00:36:07.269
there's some great doctors out there. that's

00:36:07.269 --> 00:36:10.050
unacceptable to have that kind of diagnosis and

00:36:10.050 --> 00:36:12.429
not not you know not only should you be engaging

00:36:12.429 --> 00:36:15.849
you guys but also immediately bringing in resources

00:36:15.849 --> 00:36:18.610
to be like okay this is the diagnosis but here's

00:36:18.610 --> 00:36:20.050
step one here's what we're going to send you

00:36:20.050 --> 00:36:23.469
next exactly there was no further plan after

00:36:23.469 --> 00:36:28.510
that it was he left the room and he and uh that

00:36:28.510 --> 00:36:31.579
was it i mean when he told me that I almost passed

00:36:31.579 --> 00:36:35.079
out. Yeah, I had to, like, run over. He didn't

00:36:35.079 --> 00:36:38.239
even, like, prepare us or anything. I mean, I

00:36:38.239 --> 00:36:40.639
had to literally run over and hold him up. Like,

00:36:40.679 --> 00:36:45.280
he just turned white. And, yeah, it was horrible.

00:36:45.440 --> 00:36:47.340
And then the doctor looked at me and was like,

00:36:47.519 --> 00:36:52.059
I'm sure you know what it is. Like, yeah, it's,

00:36:52.139 --> 00:36:54.340
like, so hard to go back to that day because

00:36:54.340 --> 00:36:58.079
we tried to, like, block it out. But it was the

00:36:58.079 --> 00:37:04.199
most horrible experience. Yeah, it was bad. Yeah,

00:37:04.219 --> 00:37:09.800
so after that, obviously that's a huge blow.

00:37:11.159 --> 00:37:13.880
Although I had a feeling that's what it was,

00:37:13.980 --> 00:37:18.320
you're never fully prepared to hear that. No,

00:37:18.340 --> 00:37:19.960
that your life might be shortened considerably

00:37:19.960 --> 00:37:23.760
is not exactly news. Right, and it's two to five

00:37:23.760 --> 00:37:29.139
years of a very difficult life. Paralysis comes.

00:37:29.659 --> 00:37:34.519
a lot sooner. I'm sure you can just hear my voice

00:37:34.519 --> 00:37:38.300
as I talk. I'm slowly just kind of losing my

00:37:38.300 --> 00:37:43.420
voice and having a lot of hard times speaking.

00:37:43.860 --> 00:37:48.280
But with a diagnosis like this, you have to get

00:37:48.280 --> 00:37:53.960
second opinion, maybe three, maybe four. So the

00:37:53.960 --> 00:37:57.099
unique thing about ALS is that there's no real

00:37:57.099 --> 00:38:02.440
definitive um tests that that says okay this

00:38:02.440 --> 00:38:05.179
is als they kind of have to rule everything out

00:38:05.179 --> 00:38:09.699
so i called my team doctor who is now the team

00:38:09.699 --> 00:38:15.639
doctor um for the los angeles rams and and i

00:38:15.639 --> 00:38:17.599
said hey doc you know this is what's going on

00:38:17.599 --> 00:38:22.719
they just told me i have als um basically diagnosed

00:38:22.719 --> 00:38:28.650
me you know within two weeks um And he goes,

00:38:28.710 --> 00:38:31.829
that's crazy. You don't diagnose someone with

00:38:31.829 --> 00:38:34.989
ALS in two weeks. There are so many other tests

00:38:34.989 --> 00:38:38.730
that you guys have to do. I'm going to set you

00:38:38.730 --> 00:38:41.510
up with a neurologist at Cedars -Sinai in Los

00:38:41.510 --> 00:38:45.250
Angeles. So I ended up getting along with them

00:38:45.250 --> 00:38:54.260
and much more thorough in understanding. sympathetic

00:38:54.260 --> 00:38:58.519
you know professional right just just to be able

00:38:58.519 --> 00:39:01.539
to sit down with me and my wife my brothers my

00:39:01.539 --> 00:39:05.780
dad and explain to us you know this is what ALS

00:39:05.780 --> 00:39:10.000
is I can see why that neurologist came to the

00:39:10.000 --> 00:39:13.300
conclusion but let's roll out all these other

00:39:13.300 --> 00:39:17.820
things first you know so we did that we did a

00:39:17.820 --> 00:39:22.960
lot more blood tests we did another MRI And ultimately,

00:39:23.139 --> 00:39:27.280
you know, everything came back clean and everything

00:39:27.280 --> 00:39:32.179
looked good. So, basically, that, you know, means

00:39:32.179 --> 00:39:40.019
you have ALS. So, we come to find out that, so

00:39:40.019 --> 00:39:43.900
with ALS, there's two FDA -approved treatments

00:39:43.900 --> 00:39:47.880
or medicines, and they may or may not extend

00:39:47.880 --> 00:39:54.840
your life by 30 days. So a lot of people, a lot

00:39:54.840 --> 00:39:59.699
of patients don't even take the medication. How

00:39:59.699 --> 00:40:04.219
do they even gauge that they're improving in

00:40:04.219 --> 00:40:06.539
30 days? When there's a variety in how long people

00:40:06.539 --> 00:40:08.880
are living, certainly I'm sure by a few months,

00:40:09.099 --> 00:40:12.460
how can you even proclaim that you're adding

00:40:12.460 --> 00:40:15.980
30 days? That seems crazy. And that's so difficult

00:40:15.980 --> 00:40:19.400
about ALS and it's becoming a problem right now.

00:40:21.220 --> 00:40:23.840
And we'll get into it, I think, in a little bit.

00:40:24.039 --> 00:40:29.539
But there's no biomarker. Everyone's different.

00:40:30.880 --> 00:40:34.460
Everyone progresses at a different rate. And

00:40:34.460 --> 00:40:40.780
there's no way to really tell or judge. They

00:40:40.780 --> 00:40:49.389
have a sheet called the ALSFRS. Yeah. And that's

00:40:49.389 --> 00:40:52.690
how they judge. And it's a real basic physical.

00:40:52.849 --> 00:40:56.190
They just grab your hands, test your grip strength,

00:40:56.530 --> 00:41:00.489
ask you a few questions. And that's how they

00:41:00.489 --> 00:41:04.969
gauge the test. And every time we've done it,

00:41:05.010 --> 00:41:07.849
it's been a different doctor or an intern. So

00:41:07.849 --> 00:41:11.849
who's to tell you that, you know, that doctor

00:41:11.849 --> 00:41:15.789
feels a different grip strength? You know, it's

00:41:15.789 --> 00:41:19.610
stronger on pulling your arms down. It's very

00:41:19.610 --> 00:41:23.849
subjective. And that's been really frustrating

00:41:23.849 --> 00:41:30.530
because what we learned also was that for the

00:41:30.530 --> 00:41:34.809
first time ever in 150 years, there's treatment

00:41:34.809 --> 00:41:39.570
that is slowing the progression down, legitimately

00:41:39.570 --> 00:41:43.250
slowing the progression down. And some people

00:41:43.250 --> 00:41:45.989
are even having... reversals mean they're getting

00:41:45.989 --> 00:41:51.389
better improving and that's that is huge in the

00:41:51.389 --> 00:41:55.389
ALS world really in in the whole medical world

00:41:55.389 --> 00:42:00.469
and but the only way you can get to is if you're

00:42:00.469 --> 00:42:05.730
picked for the trial and it's a it's a brainstorm

00:42:05.730 --> 00:42:08.949
treatment or sorry it's a stem cell treatment

00:42:08.949 --> 00:42:12.670
by a company called brainstorm and it's it's

00:42:12.670 --> 00:42:15.619
a The treatment's called Neuron. And they're

00:42:15.619 --> 00:42:19.820
on the Phase 3 trial right now. And so it's been

00:42:19.820 --> 00:42:26.920
in the FDA process for almost 10 years. And they

00:42:26.920 --> 00:42:33.059
do a 50 % double -line placebo. So 100 people

00:42:33.059 --> 00:42:36.699
are getting the treatment. 100 people are getting

00:42:36.699 --> 00:42:41.010
sugar water. putting their back but they don't

00:42:41.010 --> 00:42:44.650
know and you don't know until the whole the whole

00:42:44.650 --> 00:42:50.190
trial is done um it's not just like a pill that

00:42:50.190 --> 00:42:52.590
you take it's a it's a year -long process and

00:42:52.590 --> 00:42:57.570
it's very like um like intensive on your body

00:42:57.570 --> 00:43:01.130
where it's you know there it's a bone marrow

00:43:01.130 --> 00:43:03.510
aspiration so they extract your bone marrow and

00:43:03.510 --> 00:43:07.840
then they spin your stem cells with their their

00:43:07.840 --> 00:43:10.360
own medicine and then they put them back in and

00:43:10.360 --> 00:43:12.980
you have to stay in the hospital overnight and

00:43:12.980 --> 00:43:16.480
do all these procedures. So it's not like you're

00:43:16.480 --> 00:43:22.519
just taking a pill. It's impacting your body

00:43:22.519 --> 00:43:26.039
a lot and it's a year long. And ALS patients,

00:43:26.179 --> 00:43:29.320
we know they don't have a year to waste if you're

00:43:29.320 --> 00:43:32.440
getting sugar water in your back. Like you said,

00:43:32.480 --> 00:43:34.039
especially if you're getting, because I think

00:43:34.039 --> 00:43:35.960
the bone marrow, isn't it pulling from the hip?

00:43:36.079 --> 00:43:37.980
Is that right? It's supposed to be extremely

00:43:37.980 --> 00:43:40.659
painful. Go through all that. Oh, by the way,

00:43:40.760 --> 00:43:42.940
you had the sugar water. Exactly. Thanks for

00:43:42.940 --> 00:43:45.739
all the pain and trouble. Exactly. Thanks for

00:43:45.739 --> 00:43:50.380
helping science out. Yes. It's crazy. The donation

00:43:50.380 --> 00:43:53.079
is appreciated. Yeah. It's absolutely insane.

00:43:53.219 --> 00:43:57.280
I couldn't believe it. So here the doctor tells

00:43:57.280 --> 00:44:00.500
you, hey, well. guess what there's treatment

00:44:00.500 --> 00:44:04.699
and it's working first time ever but you have

00:44:04.699 --> 00:44:09.539
to meet the right criteria which is a six month

00:44:09.539 --> 00:44:12.619
lead -in phase just to see if you're progressing

00:44:12.619 --> 00:44:16.219
fast enough or slow enough to be meet the perfect

00:44:16.219 --> 00:44:20.340
criteria and then if you do accept it it's a

00:44:20.340 --> 00:44:23.760
50 chance that you that you get the treatment

00:44:23.760 --> 00:44:29.170
um so to hear that there's treatment that is

00:44:29.170 --> 00:44:33.389
working and helping people for the first time

00:44:33.389 --> 00:44:39.550
ever, but you can't access it is, is, uh, for

00:44:39.550 --> 00:44:44.630
a terminal diagnosis is just crazy to me. And

00:44:44.630 --> 00:44:51.190
I can, I, we can believe it. So, um, really,

00:44:51.389 --> 00:44:55.750
you know, uh, especially in a phase three part

00:44:55.750 --> 00:44:58.469
of the trial, which means that It's already deemed

00:44:58.469 --> 00:45:03.230
safe in phase one. In phase two, it's proven

00:45:03.230 --> 00:45:07.630
that it works. So it's safe and it works. So

00:45:07.630 --> 00:45:10.409
why aren't people getting the treatment yet?

00:45:11.489 --> 00:45:17.010
People with ALS, there's every 90 seconds someone's

00:45:17.010 --> 00:45:20.630
dying from ALS. Every 90 seconds someone is diagnosed

00:45:20.630 --> 00:45:24.869
with ALS. There's over 30 ,000 Americans right

00:45:24.869 --> 00:45:29.920
now. living with it, dying from ALS. And one

00:45:29.920 --> 00:45:36.920
in six people with ALS are a veteran. If you're

00:45:36.920 --> 00:45:40.659
a first responder or an athlete, you're two times

00:45:40.659 --> 00:45:45.820
likely to get ALS than your normal person. Do

00:45:45.820 --> 00:45:47.719
they think there's a connection with TBI and

00:45:47.719 --> 00:45:53.079
ALS? So they don't know exactly. My doctor seems

00:45:53.079 --> 00:45:57.219
to think that. My history of football, concussions,

00:45:57.260 --> 00:46:01.579
definitely has something to do with it. But no

00:46:01.579 --> 00:46:07.699
one can tell you and pinpoint exactly what causes

00:46:07.699 --> 00:46:11.460
ALS. They think it could be from head trauma,

00:46:11.619 --> 00:46:16.440
stress, environmental exposure, some sort of

00:46:16.440 --> 00:46:21.059
toxin. But they can't pinpoint what exactly is

00:46:21.059 --> 00:46:29.070
causing the disease. so that's kind of what we

00:46:29.070 --> 00:46:32.710
learned at our second visit was that holy you

00:46:32.710 --> 00:46:35.889
know holy moly there's there's you can say shit

00:46:35.889 --> 00:46:39.469
yeah yeah holy shit there's there's treatment

00:46:39.469 --> 00:46:43.550
out there and there's a there's a chance to save

00:46:43.550 --> 00:46:47.150
thousands tens and thousands of people but and

00:46:47.150 --> 00:46:49.550
it's safe and it works but no one's getting it

00:46:49.550 --> 00:46:52.949
because They have to collect data for two years?

00:46:53.269 --> 00:46:56.190
When the FDA has approved many meds that we know

00:46:56.190 --> 00:46:59.989
were very unsafe, that they gave to not terminally

00:46:59.989 --> 00:47:04.610
ill people. Exactly. So the more research we've

00:47:04.610 --> 00:47:09.429
done, we found that treatment for ALS is in the

00:47:09.429 --> 00:47:14.010
same line as treatment for a headache or arthritis

00:47:14.010 --> 00:47:18.909
or erectile dysfunction. It's in the same process.

00:47:20.490 --> 00:47:28.289
So they treat ALS the same way and it takes the

00:47:28.289 --> 00:47:31.530
same amount of time to approve that drug. There

00:47:31.530 --> 00:47:35.150
has to be something different. That system is

00:47:35.150 --> 00:47:39.150
failing terminally ill people. Specifically,

00:47:39.550 --> 00:47:43.989
you know, right now with ALS, it's like the FDA

00:47:43.989 --> 00:47:48.210
has the ability to fast track or approve something.

00:47:48.940 --> 00:47:52.440
uh medic medicine if it's safe and it works and

00:47:52.440 --> 00:47:57.139
you know they feel that it's it's gonna you know

00:47:57.139 --> 00:47:59.760
help a lot of people but for some reason als

00:47:59.760 --> 00:48:04.480
has like been forgotten it's like the and we're

00:48:04.480 --> 00:48:07.860
just like left in the dust here so and 30 000

00:48:07.860 --> 00:48:11.880
people that's not this you know crazy out of

00:48:11.880 --> 00:48:15.119
left field diagnosis where you know you hear

00:48:15.119 --> 00:48:17.219
these like five people on planet earth have this

00:48:17.219 --> 00:48:21.119
thing but 30 000 i mean if 30 000 children were

00:48:21.119 --> 00:48:23.519
killed in schools the impact that would have

00:48:23.519 --> 00:48:26.559
you know you know 30 000 victims of a terrorist

00:48:26.559 --> 00:48:28.820
attack or and it's you know when you put it in

00:48:28.820 --> 00:48:30.780
that perspective and look at the obesity crisis

00:48:30.780 --> 00:48:33.280
here we focus so much on schools and we should

00:48:33.280 --> 00:48:35.579
but we're losing hundreds and hundreds of thousands

00:48:35.579 --> 00:48:38.800
of americans through all those things which are

00:48:38.800 --> 00:48:41.300
also you know those are preventable Like it's

00:48:41.300 --> 00:48:44.619
not ALS or pediatric cancer where you're trying

00:48:44.619 --> 00:48:45.920
to figure out, well, where the hell did it come

00:48:45.920 --> 00:48:48.920
from? Obesity, you know, all these, you just

00:48:48.920 --> 00:48:50.860
change the way you eat and you move. It's that

00:48:50.860 --> 00:48:54.719
simple. So that's what's frustrating to me hearing

00:48:54.719 --> 00:48:57.699
your story is all these meds get approved that

00:48:57.699 --> 00:49:00.699
shouldn't even be needed if we were teaching

00:49:00.699 --> 00:49:03.760
people how to eat and move. And yet pediatric

00:49:03.760 --> 00:49:06.380
cancer, which is a fraction of the overall cancer

00:49:06.380 --> 00:49:09.960
budget, where again, I think most... Adult cancers

00:49:09.960 --> 00:49:12.519
are, again, environmental and things we put in

00:49:12.519 --> 00:49:16.000
our body. The pediatric one where these little

00:49:16.000 --> 00:49:19.659
babies have no way of eating McDonald's and starting

00:49:19.659 --> 00:49:22.139
to screw themselves up, they get a fraction of

00:49:22.139 --> 00:49:24.019
the research, and it's the same with ALS. Yeah,

00:49:24.119 --> 00:49:28.579
it's incredible. ALS has become more prevalent,

00:49:28.639 --> 00:49:33.340
and people are getting it younger and younger.

00:49:35.630 --> 00:49:38.469
A few weeks ago, a 15 -year -old was just diagnosed

00:49:38.469 --> 00:49:42.170
with ALS. And the average is, what, like 40 and

00:49:42.170 --> 00:49:44.750
50? Is that right? They say between 40 and 70.

00:49:44.889 --> 00:49:52.449
70, okay. Yeah, that's the average age. But every

00:49:52.449 --> 00:49:57.670
once in a while, you know, you have 15, 9, 16,

00:49:58.369 --> 00:50:06.159
29, 20s. It's just... It's not as common, but...

00:50:06.159 --> 00:50:11.840
So that's kind of, you know, what we've really

00:50:11.840 --> 00:50:15.940
been focusing on right now is spreading awareness

00:50:15.940 --> 00:50:21.139
and trying to, you know, show the world that,

00:50:21.159 --> 00:50:24.579
hey, this is what's going on. This is real life.

00:50:24.639 --> 00:50:27.800
People are dying every single day. And there's

00:50:27.800 --> 00:50:31.920
treatment there that could potentially help and

00:50:31.920 --> 00:50:36.219
save. thousands and thousands of lives but no

00:50:36.219 --> 00:50:40.780
we don't have access so like something's got

00:50:40.780 --> 00:50:45.480
has to change you know this is it's really it's

00:50:45.480 --> 00:50:49.000
inhumane you know um especially the way they

00:50:49.000 --> 00:50:53.880
treat the the clinical trial you know there has

00:50:53.880 --> 00:50:56.840
to be a way to be able to do trials where more

00:50:56.840 --> 00:50:59.219
people are getting the treatment right i mean

00:50:59.219 --> 00:51:04.119
doing a 50 double blind placebo on a terminally

00:51:04.119 --> 00:51:11.340
ill patient, that is insane. It's crazy. Or like

00:51:11.340 --> 00:51:13.719
you said, if you're doing this research, you're

00:51:13.719 --> 00:51:19.360
realizing that this one is working, then maybe

00:51:19.360 --> 00:51:21.940
people that are progressing deeper in, give them

00:51:21.940 --> 00:51:24.400
a damn treatment. And then maybe some of the

00:51:24.400 --> 00:51:27.960
newer diagnosis, ethically maybe you could say,

00:51:27.980 --> 00:51:30.800
well... we'll do it on here but yeah you had

00:51:30.800 --> 00:51:33.840
to have that knowledge and that that possible

00:51:33.840 --> 00:51:36.960
way of saving lives and just to withhold it especially

00:51:36.960 --> 00:51:39.420
you know a year of treatment i mean that just

00:51:39.420 --> 00:51:41.519
doesn't make any sense to me at all especially

00:51:41.519 --> 00:51:44.599
with a year it doesn't sound that much to someone

00:51:44.599 --> 00:51:48.280
who maybe has a life expectancy of 89 years a

00:51:48.280 --> 00:51:50.440
year to someone who maybe has a life expectancy

00:51:50.440 --> 00:51:54.920
of three years that's horrendous yeah and so

00:51:55.679 --> 00:52:01.099
Another thing that blows my mind is the patients

00:52:01.099 --> 00:52:03.980
that received the treatment and they got better

00:52:03.980 --> 00:52:09.360
from it, as soon as the trial's over, they don't

00:52:09.360 --> 00:52:13.239
get the treatment anymore. So we became real

00:52:13.239 --> 00:52:19.900
close to an ALS patient. His name is Mark, and

00:52:19.900 --> 00:52:24.219
he was in the beginning of the Phase III trial.

00:52:24.699 --> 00:52:29.760
Received the treatment, got a lot better, was

00:52:29.760 --> 00:52:34.920
able to talk a lot better, was able to walk much

00:52:34.920 --> 00:52:37.019
better. So you're talking reversal, not even

00:52:37.019 --> 00:52:39.440
slowing of the decline. Not even just slowing,

00:52:39.539 --> 00:52:43.900
yeah, a little bit straight reversal. And as

00:52:43.900 --> 00:52:46.960
soon as they finish, as soon as he was done,

00:52:47.039 --> 00:52:49.639
they cut him off from the treatment. And now

00:52:49.639 --> 00:52:54.780
he's nine months from his last treatment. and

00:52:54.780 --> 00:52:58.639
he's progressing again. So here's a guy who literally

00:52:58.639 --> 00:53:03.300
had a reversal, and now he's feeling himself

00:53:03.300 --> 00:53:08.940
go right back to where he was. It's just so crazy.

00:53:09.380 --> 00:53:12.699
I mean, I don't know how you were allowed to

00:53:12.699 --> 00:53:15.019
use those people for a year. So how are you not

00:53:15.019 --> 00:53:17.000
allowed to put in the claws, even if everyone

00:53:17.000 --> 00:53:20.099
else is screwed? That 50 % who actually got it,

00:53:20.139 --> 00:53:22.940
who are improving, how are you not allowed to

00:53:22.940 --> 00:53:26.050
say, well, Those people can still do it. But

00:53:26.050 --> 00:53:28.630
I don't know. How can you sign the piece of paper

00:53:28.630 --> 00:53:32.510
that says, yes, I agree to pull that out? So

00:53:32.510 --> 00:53:36.690
you have no choice. You have to sign the paper

00:53:36.690 --> 00:53:42.650
because when you receive the diagnosis that you

00:53:42.650 --> 00:53:48.650
have ALS, right now you have a 0 % chance of

00:53:48.650 --> 00:53:52.610
survival, 100 % fatality. So your best shot.

00:53:53.500 --> 00:53:57.340
is getting this 50 % chance of treatment. So

00:53:57.340 --> 00:54:00.599
your only choice is to sign that paper. No, I'm

00:54:00.599 --> 00:54:03.159
talking about the medical community to sign the

00:54:03.159 --> 00:54:05.780
paper saying, let's stop that. Oh, no, of course.

00:54:05.920 --> 00:54:07.119
I mean, everyone's going to sign it to come in.

00:54:07.239 --> 00:54:10.199
But I'm talking as a person, whether it's higher

00:54:10.199 --> 00:54:12.679
above the research community, whatever it is,

00:54:12.780 --> 00:54:16.260
or a group of people that have said, we consent

00:54:16.260 --> 00:54:19.519
to, even if this is working, to withdraw it.

00:54:19.849 --> 00:54:21.590
And ethically, I don't know how you could even

00:54:21.590 --> 00:54:25.090
sleep at night. No, I know. So it completely,

00:54:25.269 --> 00:54:33.010
I mean, it totally blew my mind. Amanda, too,

00:54:33.190 --> 00:54:36.650
and my family. And it seems like everyone we

00:54:36.650 --> 00:54:39.670
tell this to, it's like their jaw's on the floor

00:54:39.670 --> 00:54:42.570
also. I mean, we didn't know any of this was

00:54:42.570 --> 00:54:44.789
happening until you're literally thrown right

00:54:44.789 --> 00:54:47.829
into it. So that's like what we've been fighting

00:54:47.829 --> 00:54:51.869
for. That's our mission. Our goal is to educate

00:54:51.869 --> 00:54:54.150
people on what's really happening here. It's

00:54:54.150 --> 00:54:57.530
like, yeah, this is a really sad story. And we

00:54:57.530 --> 00:55:01.369
just got married and, you know, my husband has

00:55:01.369 --> 00:55:03.849
ALS. But also there's something there that can

00:55:03.849 --> 00:55:07.269
help him. And this is what's going on and he

00:55:07.269 --> 00:55:11.269
can't get it. And so, yeah, I would say that's

00:55:11.269 --> 00:55:14.989
like our true story is no. you know, we can save

00:55:14.989 --> 00:55:18.909
him and 30 ,000 Americans as well. And that's

00:55:18.909 --> 00:55:20.550
kind of what we've been fighting for and what

00:55:20.550 --> 00:55:23.989
we've put all our energy into because with a

00:55:23.989 --> 00:55:27.010
diagnosis like this, it's hard day by day to,

00:55:27.030 --> 00:55:29.690
I mean, you never forget about it, but it's hard

00:55:29.690 --> 00:55:34.789
to move on with your normal life. So yeah, that's

00:55:34.789 --> 00:55:37.489
where we're channeling all of our energy. I think

00:55:37.489 --> 00:55:40.769
it's a really good idea. So a few years ago,

00:55:41.610 --> 00:55:44.409
I myself put myself in a bathtub full of ice,

00:55:44.590 --> 00:55:47.230
filmed a funny video, challenged three other

00:55:47.230 --> 00:55:52.329
people, and that was it. I'd done 22 push -ups

00:55:52.329 --> 00:55:54.550
because we lose a veteran every day to suicide,

00:55:54.750 --> 00:55:57.130
and that was it. You know what I mean? And I

00:55:57.130 --> 00:56:02.090
talk about this now. Those things, the fact that

00:56:02.090 --> 00:56:05.269
beginning a conversation, well, that's great,

00:56:05.369 --> 00:56:07.329
but they're also missing the fucking point. Excuse

00:56:07.329 --> 00:56:09.309
my language. They're completely missing the point

00:56:09.309 --> 00:56:14.380
because... And we're not trying to get a bunch

00:56:14.380 --> 00:56:15.820
of videos of people jumping at ice. We're trying

00:56:15.820 --> 00:56:18.639
to get people to, you know, and again, not trying

00:56:18.639 --> 00:56:20.320
to get people just to throw money mindlessly

00:56:20.320 --> 00:56:22.760
at a GoFundMe either. We're trying to get people

00:56:22.760 --> 00:56:25.019
to understand, and I do it with this project

00:56:25.019 --> 00:56:27.039
with all the elements of health that we have

00:56:27.039 --> 00:56:30.260
on it, to get so angry that they do something.

00:56:30.739 --> 00:56:33.119
And, you know, I hope this helps with you, but

00:56:33.119 --> 00:56:35.780
I've learned something sitting here. I didn't

00:56:35.780 --> 00:56:38.119
know there was a drug that, you know, that is

00:56:38.119 --> 00:56:41.420
going to work. of course there's a fundraising

00:56:41.420 --> 00:56:43.219
element to it as well but i think there's more

00:56:43.219 --> 00:56:45.340
power and a whole bunch of angry people saying

00:56:45.340 --> 00:56:48.860
you need to change this you know to their politicians

00:56:48.860 --> 00:56:51.199
or whoever it you know it takes and i think it's

00:56:51.199 --> 00:56:52.699
the same with the fire service and other areas

00:56:52.699 --> 00:56:59.380
too but um yeah we need to stop trivial physical

00:56:59.380 --> 00:57:04.519
challenges and start going I need to look into

00:57:04.519 --> 00:57:06.260
this, you know, and I think that what you're

00:57:06.260 --> 00:57:08.599
doing is what needs to be done. You know, it's

00:57:08.599 --> 00:57:10.679
with, you know, the AIDS epidemic and all these

00:57:10.679 --> 00:57:13.519
other diseases. It took usually a brave man or

00:57:13.519 --> 00:57:17.440
woman to kind of be that beacon, be like, this

00:57:17.440 --> 00:57:19.239
is what it's like. This is what we need to fix.

00:57:19.340 --> 00:57:23.699
Yeah. So, yeah, I mean, you brought up the HIV

00:57:23.699 --> 00:57:31.099
and AIDS epidemic. We're in a very similar situation.

00:57:33.530 --> 00:57:36.849
First time ever, there's treatment that's helping

00:57:36.849 --> 00:57:45.250
people. And we just have to get access to them.

00:57:45.250 --> 00:57:48.050
We need to raise awareness, and there has to

00:57:48.050 --> 00:57:53.309
be some sort of change. And like Amanda was saying,

00:57:53.449 --> 00:57:57.349
that's what we're doing all this for, is for

00:57:57.349 --> 00:58:00.809
that reason. And the fundraising, like you said,

00:58:00.889 --> 00:58:05.110
aspect. is is important too but the what's most

00:58:05.110 --> 00:58:09.010
important is getting the awareness out there

00:58:09.010 --> 00:58:11.630
telling the true story and letting people know

00:58:11.630 --> 00:58:14.349
that hey this is really going on this is this

00:58:14.349 --> 00:58:19.909
is real life you know um and this treatment this

00:58:19.909 --> 00:58:24.010
this one specifically neuron um is just the closest

00:58:24.010 --> 00:58:27.329
to being approved so that's one we're really

00:58:27.329 --> 00:58:30.909
really fighting for but there's over a dozen

00:58:31.800 --> 00:58:34.679
behind it. That might be even better. That might

00:58:34.679 --> 00:58:38.800
be better, exactly. But as long as they're stuck

00:58:38.800 --> 00:58:43.800
in these crazy, long, drawn -out trials and phases,

00:58:44.260 --> 00:58:47.679
over hundreds and thousands of people are going

00:58:47.679 --> 00:58:51.579
to die from ALS. Unless we change this pathway

00:58:51.579 --> 00:58:55.760
to gain access to these treatments, people are

00:58:55.760 --> 00:59:00.179
going to be dying. And that's the harsh reality

00:59:00.179 --> 00:59:03.550
of it. it is well so going back to the fundraiser

00:59:03.550 --> 00:59:06.929
though so my big thing with fundraising in general

00:59:06.929 --> 00:59:10.449
is we do hear of these organizations you know

00:59:10.449 --> 00:59:13.590
so much of it goes to what they call administrative

00:59:13.590 --> 00:59:16.150
costs and we see you know these people going

00:59:16.150 --> 00:59:18.030
on vacation and all this stuff with tech with

00:59:18.030 --> 00:59:21.670
the money with you specifically though there's

00:59:21.670 --> 00:59:23.869
obviously you know god forbid there's a decline

00:59:23.869 --> 00:59:26.449
there is definitely equipment that's needed so

00:59:26.449 --> 00:59:29.530
you know tell me specifically what a patient

00:59:29.530 --> 00:59:31.909
in general with als would need as they go through

00:59:31.909 --> 00:59:37.849
that timeline yeah so um right when i got diagnosed

00:59:37.849 --> 00:59:42.449
the first thing that came to my mind was i don't

00:59:42.449 --> 00:59:45.750
want my wife to suffer i don't want my family

00:59:45.750 --> 00:59:50.789
to be in debt um because of me you know and als

00:59:50.789 --> 00:59:56.630
is extremely expensive it is a As you decline,

00:59:57.010 --> 01:00:01.590
you need a ventilator to help you breathe, a

01:00:01.590 --> 01:00:07.090
trach tube to feed you, full -time, 24 -hour

01:00:07.090 --> 01:00:12.349
round care. It's estimated that it's around $300

01:00:12.349 --> 01:00:24.619
,000 a year to take care of an ALS patient. A

01:00:24.619 --> 01:00:27.400
lot of ALS patients put their family in debt,

01:00:27.599 --> 01:00:32.760
far in debt, and a lot of people choose not to

01:00:32.760 --> 01:00:37.780
live because of that. So one of the first things

01:00:37.780 --> 01:00:41.539
I said to Amanda, my dad, my brother, I said,

01:00:41.619 --> 01:00:45.920
you guys aren't going to suffer because of me.

01:00:47.840 --> 01:00:52.639
So let's do everything we can to raise money.

01:00:53.909 --> 01:01:03.769
for treatment and also awareness. Once we have

01:01:03.769 --> 01:01:08.889
a safe amount of money put away, then we can

01:01:08.889 --> 01:01:12.809
start focusing on putting our money that we raised

01:01:12.809 --> 01:01:22.530
to a foundation or a research organization. who's

01:01:22.530 --> 01:01:24.570
doing the right thing, you know, who's looking

01:01:24.570 --> 01:01:29.829
for a treatment, who has the right program, you

01:01:29.829 --> 01:01:33.409
know. So a lot of what we're doing right now

01:01:33.409 --> 01:01:36.210
is, you know, we meet with a lot of different

01:01:36.210 --> 01:01:40.909
people and we're sort of trying to sort it out

01:01:40.909 --> 01:01:43.949
and figure out who's doing the right thing, you

01:01:43.949 --> 01:01:47.429
know, who's using the money the best, who's putting

01:01:47.429 --> 01:01:50.710
it towards treatment and finding a treatment.

01:01:51.239 --> 01:01:54.619
That's going to help ALS patients now, you know,

01:01:54.619 --> 01:01:59.219
not 12 years down the road. We want to find someone

01:01:59.219 --> 01:02:04.079
who has that sense of urgency that I do, you

01:02:04.079 --> 01:02:06.460
know. That you need to have this particular disease.

01:02:07.119 --> 01:02:10.579
So finding people that get that sense of urgency

01:02:10.579 --> 01:02:15.239
is difficult. And unless you have ALS or a family

01:02:15.239 --> 01:02:20.389
member has been affected by it. They don't know,

01:02:20.550 --> 01:02:24.829
you know, they just, they don't think about that.

01:02:24.929 --> 01:02:28.170
They don't have that urgent, let's help people

01:02:28.170 --> 01:02:33.190
now. There are a few out there that do, and that

01:02:33.190 --> 01:02:37.110
too we plan on partnering up with and helping

01:02:37.110 --> 01:02:41.849
and, you know, getting things pushed forward

01:02:41.849 --> 01:02:47.369
faster. But, yeah, that's sort of the fundraising

01:02:47.369 --> 01:02:52.849
aspect of it. Yeah, and that's, again, with what

01:02:52.849 --> 01:02:55.969
you're talking about, there's a direct, every

01:02:55.969 --> 01:02:57.809
single penny of that dollar is going to go and

01:02:57.809 --> 01:03:03.690
contribute to what is ultimately needed. As a

01:03:03.690 --> 01:03:07.389
slight tangent, you've got the, like you said,

01:03:07.469 --> 01:03:11.329
the average age diagnosis. I think one of the

01:03:11.329 --> 01:03:13.829
most famous cases is Stephen Hawking, who left

01:03:13.829 --> 01:03:16.130
fifth. My memory serves me right from the movie.

01:03:16.170 --> 01:03:18.750
He was like 20s when he got it. But his life

01:03:18.750 --> 01:03:21.630
expectancy was incredible. Do you know what the

01:03:21.630 --> 01:03:24.829
difference was? Was it just luck? Yeah, I mean,

01:03:24.829 --> 01:03:32.369
he just had a slow progressing form of ALS. And,

01:03:32.550 --> 01:03:38.289
I mean, yeah, he lived until he was 70, I think,

01:03:38.349 --> 01:03:41.809
right? Yeah, around there. But those weren't

01:03:41.809 --> 01:03:47.440
good years. That's a very difficult, that's a

01:03:47.440 --> 01:03:52.659
hard way to live, you know. But he did make it

01:03:52.659 --> 01:03:57.539
that far and he's an extremely rare case and

01:03:57.539 --> 01:04:02.760
probably one of the only people ever to live

01:04:02.760 --> 01:04:07.059
that long with ALS. And it seems like that individual

01:04:07.059 --> 01:04:12.750
being so cerebral anyway. as devastating it must

01:04:12.750 --> 01:04:15.909
have been to lose his physicality had so much

01:04:15.909 --> 01:04:18.210
going on here he's probably able to deal with

01:04:18.210 --> 01:04:20.849
it right whereas most people when we lose this

01:04:20.849 --> 01:04:26.170
i'm sure exactly like right i mean that i mean

01:04:26.170 --> 01:04:30.190
simon hawkins like that guy's amazing um and

01:04:30.190 --> 01:04:33.929
like you said he's so so smart you know like

01:04:33.929 --> 01:04:37.949
for me it's like my whole life i depend on my

01:04:39.079 --> 01:04:44.860
my body you know my strength and in hands everything

01:04:44.860 --> 01:04:48.119
i've done i've done with my hands and my arms

01:04:48.119 --> 01:04:52.719
and my legs you know not to say i'm not not smart

01:04:52.719 --> 01:04:56.219
but i've definitely more of a you know physical

01:04:56.219 --> 01:04:58.920
kind of person you and me both trust me yeah

01:04:58.920 --> 01:05:00.880
i wouldn't want to be left with my thoughts yeah

01:05:00.880 --> 01:05:10.480
why can't chickens fly yeah um but yeah So. That

01:05:10.480 --> 01:05:14.260
was crazy to me when I heard about all of this.

01:05:14.280 --> 01:05:16.900
It's like your whole body shuts down, but your

01:05:16.900 --> 01:05:20.380
mind and your brain still work perfectly. You're

01:05:20.380 --> 01:05:23.800
just trapped. It's cruel what it is. It's so.

01:05:24.260 --> 01:05:30.619
It's extremely evil disease. I mean, it is like,

01:05:30.639 --> 01:05:37.340
I mean, it's a nightmare, 100%. Yeah. Now, we

01:05:37.340 --> 01:05:40.500
want to move on to positive things that are working

01:05:40.500 --> 01:05:42.639
and going to be it. But I just had a conversation

01:05:42.639 --> 01:05:44.940
with a palliative care physician. I've had on

01:05:44.940 --> 01:05:49.639
twice now. And one of the areas that we're all

01:05:49.639 --> 01:05:52.079
terrified of talking about but I think has value

01:05:52.079 --> 01:05:56.400
is choosing the day that you die if it comes

01:05:56.400 --> 01:06:00.000
to that point. And ALS was one area that he discussed

01:06:00.000 --> 01:06:03.820
was actually an acceptable, applicable thing.

01:06:05.639 --> 01:06:07.059
obviously not you we're sitting here having a

01:06:07.059 --> 01:06:09.239
conversation things are great today and all today

01:06:09.239 --> 01:06:11.940
is all we have but have you seen in that community

01:06:11.940 --> 01:06:16.099
that um you know some people do choose to do

01:06:16.099 --> 01:06:18.360
it before there's that complete diminishment

01:06:18.360 --> 01:06:24.300
of their their physicality yeah yeah i i try

01:06:24.300 --> 01:06:28.179
to stay on that literature i try not to go down

01:06:28.179 --> 01:06:31.139
that road but you can't help but think about

01:06:31.139 --> 01:06:37.530
that you know um that's just the reality um I

01:06:37.530 --> 01:06:41.670
have heard of instances where people choose not

01:06:41.670 --> 01:06:51.889
to live and leave this life early. But as of

01:06:51.889 --> 01:06:57.449
right now and the way I feel, I still have tomorrow.

01:06:57.650 --> 01:07:00.949
I still have the next day. Not everyone could

01:07:00.949 --> 01:07:07.880
say that. I think choosing life, And living this

01:07:07.880 --> 01:07:11.320
life the best that we can is worth fighting for,

01:07:11.400 --> 01:07:13.960
you know. And that's exactly what we're doing.

01:07:14.039 --> 01:07:18.599
We're fighting for this life and also over 30

01:07:18.599 --> 01:07:23.739
,000 Americans who also are going through the

01:07:23.739 --> 01:07:26.400
same thing. I mean, this is a lot bigger than

01:07:26.400 --> 01:07:32.949
me. This is about everyone, you know. I'm fortunate

01:07:32.949 --> 01:07:36.449
enough to sort of have this platform because

01:07:36.449 --> 01:07:40.030
of my history in sports and the fire department,

01:07:40.170 --> 01:07:42.610
which has been amazing. The Brotherhood and especially

01:07:42.610 --> 01:07:45.849
around the world has been rallying. And it's

01:07:45.849 --> 01:07:52.829
given us this incredible platform. And I feel

01:07:52.829 --> 01:07:56.150
very grateful and just so fortunate to have it.

01:07:56.289 --> 01:08:01.099
And I want to do everything I can to help. The

01:08:01.099 --> 01:08:07.460
mass of people that have this disease and they're

01:08:07.460 --> 01:08:11.860
going through this because they don't have to.

01:08:11.900 --> 01:08:14.420
There's a treatment there. It's working. This

01:08:14.420 --> 01:08:20.300
could be stopped. We just need to fight for it.

01:08:20.899 --> 01:08:26.840
Absolutely. It's amazing seeing the movement.

01:08:27.450 --> 01:08:30.270
The Axe ALS movement is freaking awesome. Yeah,

01:08:30.289 --> 01:08:32.069
it's really cool. Talking to Ellen and all these

01:08:32.069 --> 01:08:35.630
different people. So like you said, there's many

01:08:35.630 --> 01:08:37.770
people, sadly, that get given a platform and

01:08:37.770 --> 01:08:40.609
they do nothing with it or bad things with it.

01:08:41.310 --> 01:08:44.829
Today, things are good and you have this opportunity

01:08:44.829 --> 01:08:48.529
to really advocate for the people that have a

01:08:48.529 --> 01:08:51.250
voice. And I think if you get enough people angry,

01:08:51.470 --> 01:08:53.829
and there's so many things that we need to step

01:08:53.829 --> 01:08:57.579
up and do, we've let... douchebags in suits run

01:08:57.579 --> 01:08:59.539
our country and our health care and it's you

01:08:59.539 --> 01:09:01.260
know it's not working so we need to get our people

01:09:01.260 --> 01:09:03.140
angry enough to shake the tree and be like nah

01:09:03.140 --> 01:09:07.399
this is unacceptable you know and i hope that

01:09:07.399 --> 01:09:10.720
the right people saw ellen saw the news reports

01:09:10.720 --> 01:09:13.300
listen to this whoever that are able to influence

01:09:13.300 --> 01:09:15.960
them and maybe you know push that through yeah

01:09:15.960 --> 01:09:19.539
yeah that's what we're open to right well going

01:09:19.539 --> 01:09:22.949
to what you can control today um You know, we

01:09:22.949 --> 01:09:24.810
discussed before we started talking about some

01:09:24.810 --> 01:09:27.529
things that you realized that you could improve

01:09:27.529 --> 01:09:29.149
in your lifestyle. So what are some of those

01:09:29.149 --> 01:09:31.470
that you've done as far as nutrition and supplements?

01:09:31.949 --> 01:09:35.869
So a lot of the research we've been doing was,

01:09:36.210 --> 01:09:41.930
you know, ALS is a inflammatory disease, right?

01:09:42.789 --> 01:09:48.050
It's a rubber band. So there's inflammation going

01:09:48.050 --> 01:09:53.130
on in your brain and it's triggering. you know,

01:09:53.130 --> 01:09:58.890
this neurodegenerative disease. So anything that

01:09:58.890 --> 01:10:02.810
you can do to decrease inflammation is going

01:10:02.810 --> 01:10:05.210
to help with symptoms, help with progression.

01:10:05.310 --> 01:10:10.329
So it all comes full circle to diet, what you

01:10:10.329 --> 01:10:16.449
put in your body and what you're eating and what

01:10:16.449 --> 01:10:20.350
kind of vitamins, proteins, amino acids, supplements.

01:10:21.260 --> 01:10:27.020
That can help with that. And so what my wife

01:10:27.020 --> 01:10:33.199
and I are doing is a diet called the Terry Walls

01:10:33.199 --> 01:10:39.600
Protocol. So very high in vegetables. You can

01:10:39.600 --> 01:10:43.119
still have meat, but it's grass -fed organic

01:10:43.119 --> 01:10:48.600
meat or organs. Which are really high in vitamins

01:10:48.600 --> 01:10:54.340
too, like the liver. High in iron. Yeah. So that's

01:10:54.340 --> 01:10:56.659
kind of what we've been focusing on right now.

01:10:56.720 --> 01:11:05.340
Just, you know, our diet and trying to eat better

01:11:05.340 --> 01:11:09.000
and decrease that inflammation. We have a sauna

01:11:09.000 --> 01:11:14.600
in the room next door. So trying to, you know,

01:11:14.600 --> 01:11:18.470
just detox. Sweat out the toxins and just getting

01:11:18.470 --> 01:11:24.149
the good stuff in, the bad stuff out. Have you

01:11:24.149 --> 01:11:26.770
done any of the ice bath, cold showers, anything?

01:11:27.069 --> 01:11:29.569
Ironically, ice bath with the ALS. Yeah. But,

01:11:29.609 --> 01:11:31.189
I mean, I wonder if that cold contrast would

01:11:31.189 --> 01:11:34.170
be good for inflammation too. Yeah. So, I mean,

01:11:34.170 --> 01:11:37.329
when I was playing football, I lived in the cold

01:11:37.329 --> 01:11:40.550
bath and hot tub. That was like what got me through.

01:11:41.029 --> 01:11:45.729
And so, it's funny. As soon as I got this diagnosis,

01:11:45.989 --> 01:11:50.170
I was like, I just craved ice bath. I just wanted

01:11:50.170 --> 01:11:53.550
to go to the ice bath so bad. So, yeah, I've

01:11:53.550 --> 01:11:57.510
been doing ice bath and the sauna too. And I

01:11:57.510 --> 01:12:02.130
think it helps. It's hard to tell. I definitely

01:12:02.130 --> 01:12:05.369
feel like I'm progressing still, but I don't

01:12:05.369 --> 01:12:07.909
know if I'd be progressing faster if I wasn't.

01:12:08.010 --> 01:12:11.449
So that's the unique thing about ALS. It's really

01:12:11.449 --> 01:12:15.720
hard to... pinpoint what's working or what's

01:12:15.720 --> 01:12:19.539
not or what's you know maybe causing you to progress

01:12:19.539 --> 01:12:23.619
faster so it makes me feel a lot better that's

01:12:23.619 --> 01:12:27.939
for sure um is it slowing the progression down

01:12:27.939 --> 01:12:31.039
i'm not sure i think it's just a little early

01:12:31.039 --> 01:12:34.880
to tell you know i think i'm four months into

01:12:34.880 --> 01:12:40.079
this so um i do feel better while i'm doing it

01:12:40.079 --> 01:12:45.510
and yeah So that's mentally I feel good. It's

01:12:45.510 --> 01:12:49.149
hard to tell as far as physically. So I think

01:12:49.149 --> 01:12:53.590
time will tell. Now what about you take CBD and

01:12:53.590 --> 01:12:58.409
CBG? You just learned about today. Yeah, so I

01:12:58.409 --> 01:13:02.090
take CBD before I go to bed. It kind of just

01:13:02.090 --> 01:13:05.229
helps me relax. It helps me to sleep. And then

01:13:05.229 --> 01:13:11.550
CBG is very similar to CBD. It doesn't have that.

01:13:15.499 --> 01:13:22.819
that psychoactive THC does it's just and it's

01:13:22.819 --> 01:13:25.239
been helping it definitely helps we have like

01:13:25.239 --> 01:13:30.100
a CBD rub too that I put on my arms that helps

01:13:30.100 --> 01:13:35.800
with twitching and fasciculation but I have read

01:13:35.800 --> 01:13:39.760
a lot of good stuff about THC with ALS too but

01:13:40.430 --> 01:13:47.789
As a firefighter, we get drug tested. I've gotten

01:13:47.789 --> 01:13:54.069
to stay away from that. Growing up, my dad always

01:13:54.069 --> 01:13:58.670
taught us, stay away from marijuana. You can

01:13:58.670 --> 01:14:04.449
drink beers, but don't smoke pot. I had this

01:14:04.449 --> 01:14:12.390
engraved in my head. marijuana is bad stay away

01:14:12.390 --> 01:14:18.109
from it but um if the more research we've been

01:14:18.109 --> 01:14:20.550
doing it seems like you know people are having

01:14:20.550 --> 01:14:23.310
a lot of success with it so and that's what we

01:14:23.310 --> 01:14:24.510
were talking about before we started recording

01:14:24.510 --> 01:14:29.210
it's it's sad that our hands are bound you know

01:14:29.210 --> 01:14:31.710
and you and i both know you could be prescribed

01:14:31.710 --> 01:14:34.210
opiates and you come drink when you get home

01:14:34.210 --> 01:14:36.079
every night No one's going to bat an eyelid,

01:14:36.159 --> 01:14:39.659
but God forbid you take THC, you know, then the

01:14:39.659 --> 01:14:42.760
world loses its mind. And I hope you personally

01:14:42.760 --> 01:14:45.279
are able to get a point with your employer that

01:14:45.279 --> 01:14:47.760
they're able to make an exception. I mean, you're

01:14:47.760 --> 01:14:49.979
not running calls at the moment anyway, you know,

01:14:49.979 --> 01:14:53.619
but what if it works well? You're doing everything

01:14:53.619 --> 01:14:55.899
else right. Whether, you know, you have no gauge

01:14:55.899 --> 01:14:58.060
of it slowing down, but you know damn well you're

01:14:58.060 --> 01:15:00.020
not accelerating it. You know, you're eating

01:15:00.020 --> 01:15:02.979
clean and taking the supplements, but I mean.

01:15:03.340 --> 01:15:06.100
I've heard some incredible things about THC as

01:15:06.100 --> 01:15:08.859
well. And, you know, what have you got to lose

01:15:08.859 --> 01:15:11.420
apart from someone telling you because of some

01:15:11.420 --> 01:15:15.439
racist, you know, dude in the 1930s that demonized

01:15:15.439 --> 01:15:19.579
marijuana that you can't try what might be another,

01:15:19.760 --> 01:15:23.359
you know, incredible benefit to slow down ALS.

01:15:23.399 --> 01:15:26.979
So I hope that's resolved too. Yeah. Yeah, definitely.

01:15:28.039 --> 01:15:31.180
Right. Well, I'm going to go to some closing

01:15:31.180 --> 01:15:33.279
questions because I've been going. whatever an

01:15:33.279 --> 01:15:37.859
hour now exhaust you no that's that's didn't

01:15:37.859 --> 01:15:39.579
seem like that long it seems like it's going

01:15:39.579 --> 01:15:42.319
off pretty fast yeah it usually does yeah someone's

01:15:42.319 --> 01:15:46.060
a look at my um but uh so the first one i love

01:15:46.060 --> 01:15:47.680
to ask and we'll ask you know for both of you

01:15:47.680 --> 01:15:50.380
guys um is there a book that you love to recommend

01:15:50.380 --> 01:15:52.300
it could be what we discussed or something completely

01:15:52.300 --> 01:15:57.340
different um i would say that the terry walls

01:15:57.340 --> 01:16:02.329
protocol i mean that's I don't know for sure.

01:16:02.449 --> 01:16:05.390
I mean, I think it's too early to really tell.

01:16:05.829 --> 01:16:11.010
But everything she says in there just makes perfect

01:16:11.010 --> 01:16:15.569
sense. Just as far as getting back to the basics,

01:16:15.829 --> 01:16:20.149
you know, eating clean, eating vegetables, eating,

01:16:20.350 --> 01:16:24.670
you know, grass -fed organic meat and staying

01:16:24.670 --> 01:16:29.189
away from, you know, processed foods. and sugars

01:16:29.189 --> 01:16:32.329
and things that are essentially, you know, manmade.

01:16:32.670 --> 01:16:38.890
Um, it just, it just, there's no arguing it,

01:16:38.890 --> 01:16:43.170
you know, she just hits these points and that

01:16:43.170 --> 01:16:45.430
makes sense. Yeah. It just makes perfect sense.

01:16:45.590 --> 01:16:48.789
And, you know, I think before this, it wasn't

01:16:48.789 --> 01:16:52.510
that I wasn't, I was, I wasn't eating clean.

01:16:52.630 --> 01:16:57.140
I've always had like, you know, um, We ate pretty

01:16:57.140 --> 01:17:00.560
good because, you know, we were athletes and

01:17:00.560 --> 01:17:03.460
we kind of learned how to eat through, you know,

01:17:03.460 --> 01:17:07.460
college and high school and stuff. But the focus

01:17:07.460 --> 01:17:11.939
is definitely more on cleaner foods for sure.

01:17:13.520 --> 01:17:16.020
Amanda, give me the background of who she is

01:17:16.020 --> 01:17:20.060
and how she discovered that. Yeah, so Terry Walls

01:17:20.060 --> 01:17:25.199
is a woman who had MS. She still has MS. But

01:17:25.199 --> 01:17:30.039
she had progressed a lot. She was wheelchair

01:17:30.039 --> 01:17:36.340
-bound. And so she decided to try to change her

01:17:36.340 --> 01:17:43.560
MS with her diet. So she started eating. It's

01:17:43.560 --> 01:17:46.819
kind of like paleo. It's really focusing on vegetables

01:17:46.819 --> 01:17:49.840
and, like Eric said, those grass -fed organic

01:17:49.840 --> 01:17:56.239
meats. So she started changing her diet and noticed

01:17:56.239 --> 01:18:00.659
a huge improvement in her mobility, everything.

01:18:00.899 --> 01:18:05.039
So she's out of her wheelchair now. She's doing

01:18:05.039 --> 01:18:09.119
really well. And she recommends this diet for

01:18:09.119 --> 01:18:11.359
a lot of people with MS. Now, we don't know how

01:18:11.359 --> 01:18:16.409
it affects people with ALS. And like Eric said,

01:18:16.590 --> 01:18:19.050
it makes sense. It's so important what you're

01:18:19.050 --> 01:18:22.670
putting into your body. So we're giving it a

01:18:22.670 --> 01:18:25.789
try. And it's like he talked about, it keeps

01:18:25.789 --> 01:18:30.770
the inflammation down. And I don't know, I think

01:18:30.770 --> 01:18:35.710
I feel better. I'm not like as bloated. I don't

01:18:35.710 --> 01:18:38.989
ever feel like I'm so full. Like sometimes, you

01:18:38.989 --> 01:18:41.970
know, after you eat a huge meal, you feel disgusting.

01:18:43.109 --> 01:18:45.449
So I haven't had that feeling in a really long

01:18:45.449 --> 01:18:49.390
time. So I don't know. And maybe it's just a

01:18:49.390 --> 01:18:51.770
little bit mental for us, too. It's just, you

01:18:51.770 --> 01:18:53.130
know, knowing that you're putting really good

01:18:53.130 --> 01:18:56.029
things into your body to help you. So, yeah,

01:18:56.050 --> 01:18:58.329
that's something we've been trying. We've been

01:18:58.329 --> 01:19:02.779
doing it for a few weeks now. It's hard, though.

01:19:02.819 --> 01:19:06.500
It does take a lot of planning and a lot of work.

01:19:06.680 --> 01:19:11.279
But it's kind of like our job to eat healthy

01:19:11.279 --> 01:19:14.960
now to help him. Yeah. And again, as far as getting

01:19:14.960 --> 01:19:18.300
people angry, I just interviewed the guy that

01:19:18.300 --> 01:19:21.979
made the Game Changers movie. And there's some

01:19:21.979 --> 01:19:24.720
to and fro between the two sides. But again,

01:19:24.800 --> 01:19:28.539
the middle ground is voting with a dollar if

01:19:28.539 --> 01:19:31.739
all food was organic again. All animals were

01:19:31.739 --> 01:19:36.119
not locked in some factory and keep kept alive

01:19:36.119 --> 01:19:38.340
by antibiotics until they could slaughter their

01:19:38.340 --> 01:19:41.699
dirty meat because they're so sick. If we had

01:19:41.699 --> 01:19:45.640
all the same type of foods and farms that our

01:19:45.640 --> 01:19:47.939
great grandparents had, then it would be cheap

01:19:47.939 --> 01:19:49.640
and it wouldn't be hard for you. Every store

01:19:49.640 --> 01:19:51.920
would have it. But that's the problem at the

01:19:51.920 --> 01:19:54.319
moment is people have to look. We're lucky in

01:19:54.319 --> 01:19:57.159
Florida because we're surrounded by lush farmland.

01:19:57.260 --> 01:20:00.000
So it's a lot easier, I think, than, you know,

01:20:00.020 --> 01:20:04.579
obviously California's desert, really. But there's

01:20:04.579 --> 01:20:07.840
no reason why if we did it for thousands and

01:20:07.840 --> 01:20:09.420
thousands of years, why everyone thinks it's

01:20:09.420 --> 01:20:12.199
insanity that we can't go back to that. Well,

01:20:12.239 --> 01:20:13.880
you don't even have to say, is that organic?

01:20:14.960 --> 01:20:19.560
We talked before recording as well, and I've

01:20:19.560 --> 01:20:21.760
talked about this a lot. the fact that they're

01:20:21.760 --> 01:20:25.180
wearing hazmat suits spraying our food and then

01:20:25.180 --> 01:20:26.600
we have all these people getting these weird

01:20:26.600 --> 01:20:29.840
and wonderful diseases i mean that in itself

01:20:29.840 --> 01:20:31.800
is no question there has to be a correlation

01:20:31.800 --> 01:20:36.359
you know so yeah so i think i mean you know i

01:20:36.359 --> 01:20:38.260
don't think it's a placebo i think it just is

01:20:38.260 --> 01:20:40.739
common sense you're asking your food to not be

01:20:40.739 --> 01:20:44.420
messed with simple as that right it really is

01:20:44.420 --> 01:20:48.659
yeah another thing that we're doing it it's um

01:20:49.119 --> 01:20:51.699
It's called The Medical Medium. It's by Anthony

01:20:51.699 --> 01:20:57.000
William. Eric starts his day with a 16 -ounce

01:20:57.000 --> 01:20:59.899
glass of celery juice on an empty stomach. And

01:20:59.899 --> 01:21:05.579
in his book, he just talks about how it really

01:21:05.579 --> 01:21:08.680
helps your body kind of clear those toxins and

01:21:08.680 --> 01:21:11.779
just give your body a fresh start for the day.

01:21:11.840 --> 01:21:14.319
And it is really important that it's fresh celery

01:21:14.319 --> 01:21:16.739
juice and right on an empty stomach when you

01:21:16.739 --> 01:21:20.239
wake up. We bought a juicer and we've been doing

01:21:20.239 --> 01:21:22.439
that, or he's been doing it. I tried it, but

01:21:22.439 --> 01:21:26.239
I just can't do the celery juice by itself. But

01:21:26.239 --> 01:21:30.680
he does it every morning. Yeah, I actually really

01:21:30.680 --> 01:21:36.100
like celery juice. So I don't mind it. I actually

01:21:36.100 --> 01:21:40.000
look forward to it. Well, I started doing, I

01:21:40.000 --> 01:21:43.479
had Stan Efferding on the show, who's a bodybuilder,

01:21:43.479 --> 01:21:45.279
powerlifter, they call him the Rhino, but he's

01:21:45.279 --> 01:21:48.609
big on nutrition. He's got the vertical diet.

01:21:48.770 --> 01:21:52.670
Have you ever seen that? Anyway, but one of the

01:21:52.670 --> 01:21:54.529
things he talked about, there's this complete

01:21:54.529 --> 01:21:57.970
aversion to salt. And you live in a place where

01:21:57.970 --> 01:21:59.770
it's very hot and you sweat a lot. I do as well.

01:22:01.010 --> 01:22:05.470
And so his first thing in the morning is a big

01:22:05.470 --> 01:22:07.750
glass of water with lemon juice and a little

01:22:07.750 --> 01:22:09.710
bit of salt in it. And I started doing that,

01:22:09.770 --> 01:22:12.310
and it's kind of the same thing. Initially, it's

01:22:12.310 --> 01:22:15.699
not. I mean, it's actually not bad, but it's

01:22:15.699 --> 01:22:17.619
a little salty, which is kind of weird. But you

01:22:17.619 --> 01:22:20.960
do, it's like if you've been processing all the

01:22:20.960 --> 01:22:22.859
toxins and everything in your body, and then

01:22:22.859 --> 01:22:24.899
you give a big tall glass of water with that

01:22:24.899 --> 01:22:27.859
as the first thing you do, then you're hydrating

01:22:27.859 --> 01:22:30.920
and you're putting those minerals back in your

01:22:30.920 --> 01:22:33.699
body. So again, sense, it just makes sense. Right.

01:22:34.000 --> 01:22:37.220
For sure. All right, so the same question, but

01:22:37.220 --> 01:22:40.539
a movie. Eric, first, what's your favorite movie?

01:22:41.760 --> 01:22:49.579
Oh, gosh. I like Legends of the Fall. Legends

01:22:49.579 --> 01:22:52.840
of the Fall? Yeah. Brad is pretty hot. Yeah,

01:22:52.840 --> 01:23:01.300
he gets me every time. No, I really like Montana.

01:23:01.760 --> 01:23:05.760
It's just the setting of that movie is incredible.

01:23:07.340 --> 01:23:11.520
And it's about brothers and a little bit of a

01:23:11.520 --> 01:23:15.909
love story. you know one brother goes to war

01:23:15.909 --> 01:23:19.729
and the other three brothers go with them or

01:23:19.729 --> 01:23:22.109
the other two brothers go with them and kind

01:23:22.109 --> 01:23:27.050
of protect him the whole time you know but yeah

01:23:27.050 --> 01:23:32.130
I don't know that movie's just been I watched

01:23:32.130 --> 01:23:37.529
it when I was like in 8th grade and I think it's

01:23:37.529 --> 01:23:41.220
been my favorite movie ever since Yeah, it was

01:23:41.220 --> 01:23:43.539
a good film. Yeah. Was Anthony Hopkins in that

01:23:43.539 --> 01:23:47.439
too? Yeah, Anthony Hopkins. Yeah. Grumpy old

01:23:47.439 --> 01:23:51.960
bastard. Yeah, yeah. He's a grumpy old colonel.

01:23:53.560 --> 01:23:58.260
Yeah, the whole setting is just awesome. It's

01:23:58.260 --> 01:24:01.359
beautiful. Yeah, absolutely. So, Amanda, same

01:24:01.359 --> 01:24:03.600
question. Oh, gosh. I'm like sitting here freaking

01:24:03.600 --> 01:24:05.260
out because I don't even know. There better be

01:24:05.260 --> 01:24:07.420
a good one. What? I don't know. What's my favorite

01:24:07.420 --> 01:24:10.210
movie? I don't know. This is one of your favorites.

01:24:10.310 --> 01:24:11.949
Just one that you would recommend to people.

01:24:12.029 --> 01:24:14.289
One that you've seen that you liked. Oh, man.

01:24:14.430 --> 01:24:16.609
I feel like we haven't seen a good movie in a

01:24:16.609 --> 01:24:18.949
long time. I feel like they just don't make movies

01:24:18.949 --> 01:24:23.829
like they used to. I don't know when the last

01:24:23.829 --> 01:24:27.550
really good movie came out. I know. I'm honestly

01:24:27.550 --> 01:24:36.619
trying to think of a movie that... Oh, gosh,

01:24:36.699 --> 01:24:38.020
no. I can't spit my words out then. What about

01:24:38.020 --> 01:24:39.979
a documentary? Is there a documentary you remember

01:24:39.979 --> 01:24:46.020
seeing that you were struck by? I'm trying to

01:24:46.020 --> 01:24:50.300
think. The only documentary I think we've seen

01:24:50.300 --> 01:24:55.399
that we probably both watched was Blackfish or

01:24:55.399 --> 01:25:00.979
something. The one with the orcas, yeah. Oh,

01:25:01.060 --> 01:25:04.539
man, I'm not good at these questions. That's

01:25:04.539 --> 01:25:08.220
a great point again. people arguing like from

01:25:08.220 --> 01:25:10.140
the sides in the middle ground is do you honestly

01:25:10.140 --> 01:25:11.899
think a killer whale is supposed to live in a

01:25:11.899 --> 01:25:14.060
swimming pool right it's a simple freaking question

01:25:14.060 --> 01:25:16.199
right of course it's not this is a mammal that

01:25:16.199 --> 01:25:18.460
you know goes if it's a mammal or fish i'm not

01:25:18.460 --> 01:25:21.680
sure but you know it goes thousands of miles

01:25:21.680 --> 01:25:25.420
in the in the wild so yeah i honestly don't we

01:25:25.420 --> 01:25:29.439
don't watch tv that much you watch a lot of documentaries

01:25:29.439 --> 01:25:35.319
yeah i'm trying to think It's like we haven't

01:25:35.319 --> 01:25:38.060
watched TV, I feel like, in four months. We've

01:25:38.060 --> 01:25:41.180
been so busy. You've been on TV more than you've

01:25:41.180 --> 01:25:44.319
watched it. Yeah. I mean, it's been. That's the

01:25:44.319 --> 01:25:47.800
only time we watch it. We never really were like,

01:25:47.859 --> 01:25:51.619
we never watched a lot of TV to begin with. And

01:25:51.619 --> 01:25:55.180
now we really haven't. I mean, you could see

01:25:55.180 --> 01:26:00.829
the size of our TV. That used to be a big TV

01:26:00.829 --> 01:26:04.010
not too long ago. Now that's like you sit in

01:26:04.010 --> 01:26:05.909
the back of the plane seat in that thing. Exactly.

01:26:06.409 --> 01:26:09.050
We watch a lot of like Planet Earth before bed.

01:26:09.210 --> 01:26:12.250
Oh, yeah. That's a great show. That's like our

01:26:12.250 --> 01:26:15.630
go -to. All right. That's lots of good. Yeah.

01:26:16.529 --> 01:26:19.210
I know. I wasn't prepared for these questions.

01:26:19.470 --> 01:26:21.630
No, no problem. They catch people out. So I'll

01:26:21.630 --> 01:26:24.109
give you a different one. Is there a person that

01:26:24.109 --> 01:26:26.489
you would love to recommend to come on this podcast

01:26:26.489 --> 01:26:29.539
to speak to first responders, military? Medical

01:26:29.539 --> 01:26:33.859
community. Human beings. While you're thinking,

01:26:33.920 --> 01:26:35.680
I'd love to get Ellen on one day. I think she'd

01:26:35.680 --> 01:26:38.140
be awesome. She does so much for the fire service.

01:26:38.420 --> 01:26:39.520
Yeah, I was going to say her, actually. Yeah,

01:26:39.539 --> 01:26:43.720
get Ellen on here. Ellen would be amazing. She

01:26:43.720 --> 01:26:46.300
told us over and over how much she loved firefighters.

01:26:46.659 --> 01:26:51.220
Yeah, she's a huge, huge supporter. And I think

01:26:51.220 --> 01:26:55.279
like a few days before she had us on, she had...

01:26:56.159 --> 01:26:58.239
I'm pretty sure it was the fire station that

01:26:58.239 --> 01:27:00.000
saved her house during the fires. It was like

01:27:00.000 --> 01:27:02.380
10 firemen? Yeah. Yeah, I remember seeing that

01:27:02.380 --> 01:27:05.699
as well. And when we were first talking to the

01:27:05.699 --> 01:27:08.859
producers to go on to the show, they just kept

01:27:08.859 --> 01:27:10.779
saying, you know, Ellen loves firemen. You know,

01:27:10.819 --> 01:27:14.939
she loves firefighters. And, yeah, so. She definitely

01:27:14.939 --> 01:27:17.020
made that very clear. She would be very cool

01:27:17.020 --> 01:27:18.880
to have on here. She'd never know. I mean, if

01:27:18.880 --> 01:27:21.739
she does, this is the way to talk to them. But

01:27:21.739 --> 01:27:23.619
I actually saw her show. I used to live in Burbank,

01:27:23.680 --> 01:27:27.140
and I went to the live show one time. Oh, nice.

01:27:27.319 --> 01:27:30.720
Not as a guest, just as watching. All right,

01:27:30.720 --> 01:27:32.760
well, we'll move on. The last thing before we

01:27:32.760 --> 01:27:34.560
really go into where people can reach you and

01:27:34.560 --> 01:27:38.260
how they can help, what do you do to decompress?

01:27:39.340 --> 01:27:48.699
To Usar. Well, so I used to be working out, running,

01:27:49.000 --> 01:27:54.800
surfing, mountain biking. I spent a lot of time

01:27:54.800 --> 01:27:58.739
fishing. I spent a lot of time in the outdoors.

01:27:59.020 --> 01:28:06.560
But all those things I named have become a lot

01:28:06.560 --> 01:28:11.720
more difficult for me. And they also say if you

01:28:11.720 --> 01:28:17.680
work out too hard or too much, it could increase

01:28:17.680 --> 01:28:21.739
the progression. So I've had to kind of step

01:28:21.739 --> 01:28:25.140
back and take it easy. And that could even be

01:28:25.140 --> 01:28:27.500
the inflammation side again, huh? Exactly. Yeah.

01:28:27.579 --> 01:28:31.819
So the sauna, we got a sauna donated to us. So

01:28:31.819 --> 01:28:38.239
that's been huge. Just being able to go in there

01:28:38.239 --> 01:28:45.260
and break a sweat. I used to. It has been great,

01:28:45.479 --> 01:28:49.800
but I still like going outside, take our dog

01:28:49.800 --> 01:28:54.560
to the beach and walk on the beach and looking

01:28:54.560 --> 01:28:59.600
at the surf and stuff. My brother and I will

01:28:59.600 --> 01:29:03.199
paddle out, but I can't really stand up anymore.

01:29:04.520 --> 01:29:06.560
And that's got to be a little daunting being

01:29:06.560 --> 01:29:09.810
in the water, not having the... ability that

01:29:09.810 --> 01:29:13.689
you had before for sure that's been that's been

01:29:13.689 --> 01:29:16.289
one of the most difficult things is that you

01:29:16.289 --> 01:29:23.090
know i was so active um before and um not being

01:29:23.090 --> 01:29:28.750
able to do that is is is hard mentally too and

01:29:28.750 --> 01:29:33.210
i'm also you know i'm kind of nervous to to try

01:29:33.210 --> 01:29:36.329
things because i don't want to fail you know

01:29:36.329 --> 01:29:41.500
and then it's a reminder that I have this and

01:29:41.500 --> 01:29:44.840
you know this is kind of the way I'm declining

01:29:44.840 --> 01:29:48.779
you know so I see yeah so I just try to take

01:29:48.779 --> 01:29:53.600
it easy um I like when we have time you know

01:29:53.600 --> 01:29:58.180
reading or um going to the sauna walking walking

01:29:58.180 --> 01:30:03.149
the dog that's kind of what um what I've been

01:30:03.149 --> 01:30:06.750
doing recently. Have you tried yoga? Yeah, yoga.

01:30:07.409 --> 01:30:10.569
We do yoga every once in a while. Probably not

01:30:10.569 --> 01:30:14.229
as much as we should. I mean, I really like yoga,

01:30:14.489 --> 01:30:17.590
especially like core power where you're in that

01:30:17.590 --> 01:30:23.750
flow kind of yoga. But we just don't do it enough.

01:30:23.890 --> 01:30:26.170
I think we should do it more for sure. Because

01:30:26.170 --> 01:30:28.409
again, the meditation element to it as well,

01:30:28.449 --> 01:30:31.420
the positive affirmations and all that. Yeah,

01:30:31.460 --> 01:30:36.920
I'm a huge believer in yoga for sure. I used

01:30:36.920 --> 01:30:41.500
to do it when I played football. I mean, it just

01:30:41.500 --> 01:30:45.699
helps having clarity, flexibility, injury prevention.

01:30:48.279 --> 01:30:51.739
And you break a sweat, you feel good, and it's

01:30:51.739 --> 01:30:56.380
just everything about it is positive. Yeah, absolutely.

01:30:57.180 --> 01:31:03.239
Amanda, same for you, decompress. Oh, man. I

01:31:03.239 --> 01:31:09.300
like to read a lot. So I'll do a lot of reading.

01:31:09.359 --> 01:31:12.899
Taking our dog for long walks. There's like a

01:31:12.899 --> 01:31:16.800
back bay by our house. So I like to take him

01:31:16.800 --> 01:31:19.659
on long walks through there and usually listen

01:31:19.659 --> 01:31:25.619
to music or podcast or kind of just let my mind

01:31:25.619 --> 01:31:32.000
escape from all this or try to. I've only been

01:31:32.000 --> 01:31:33.939
in the sauna once. I don't know. It's hard for

01:31:33.939 --> 01:31:38.279
me to sit there for that long. So I don't do

01:31:38.279 --> 01:31:39.840
that that much. At least you don't have to put

01:31:39.840 --> 01:31:43.800
up with 50 -year -old obese men taking the towel

01:31:43.800 --> 01:31:45.960
off their junk and just sitting there like some

01:31:45.960 --> 01:31:51.659
of the gyms I've been to. Seriously. She still

01:31:51.659 --> 01:31:57.579
teaches soccer, so she does soccer lessons, I

01:31:57.579 --> 01:32:01.670
feel like. and and you work out you know she

01:32:01.670 --> 01:32:04.289
does orange orange theory you ever heard of that

01:32:04.289 --> 01:32:07.130
yes yeah so we go in different zones yeah so

01:32:07.130 --> 01:32:10.909
we were actually doing that quite a bit um together

01:32:10.909 --> 01:32:17.130
um before this all happened but so yeah but it's

01:32:17.130 --> 01:32:20.090
still i haven't done it in a while because it

01:32:20.090 --> 01:32:23.449
just like mentally i can't get into it i don't

01:32:23.449 --> 01:32:27.869
know it's too hard for me right now but um Yeah,

01:32:27.890 --> 01:32:32.149
I would just say a lot of reading and, I don't

01:32:32.149 --> 01:32:35.710
know, this keeps us pretty busy. I don't know,

01:32:35.810 --> 01:32:38.649
I guess I've been doing a lot of cooking, trying

01:32:38.649 --> 01:32:42.869
to try different meals for us to eat. So that's

01:32:42.869 --> 01:32:49.170
been fun. Yeah, we go to the beach a lot. We

01:32:49.170 --> 01:32:52.770
like to take our dog to the dog beach down in

01:32:52.770 --> 01:32:56.409
Newport and just kind of run around with him

01:32:56.409 --> 01:33:01.210
there. And honestly, he helps a lot to our dog

01:33:01.210 --> 01:33:06.949
with just like, I don't know, he's decompressed

01:33:06.949 --> 01:33:09.550
with him. He's just like so happy to be around.

01:33:09.789 --> 01:33:12.210
So the dog we're talking about, is that the one

01:33:12.210 --> 01:33:15.409
right by the bridge? Yeah, that's right where

01:33:15.409 --> 01:33:18.189
my friend I was visiting. Their house is like

01:33:18.189 --> 01:33:21.729
half a block back right by there. So you've probably

01:33:21.729 --> 01:33:24.529
even seen their dog. probably yeah we go there

01:33:24.529 --> 01:33:27.850
a lot our dog loves it he loves the water and

01:33:27.850 --> 01:33:30.609
he'll like go in the water and then run out and

01:33:30.609 --> 01:33:33.090
roll in the sand and it's like the whole day

01:33:33.090 --> 01:33:36.529
yeah it's like a whole day process because he's

01:33:36.529 --> 01:33:40.630
so dirty after but he loves it and yeah we we

01:33:40.630 --> 01:33:43.729
love going to the beach so very healing place

01:33:43.729 --> 01:33:46.569
yeah all right so then let's talk about first

01:33:46.569 --> 01:33:52.579
so so um what can people do to try and put pressure

01:33:52.579 --> 01:33:55.500
on speeding this process up have you found any

01:33:55.500 --> 01:33:59.119
avenues people the right to organizations to

01:33:59.119 --> 01:34:04.539
support anything like that so what we've been

01:34:04.539 --> 01:34:10.619
doing um we we we just got back from dc so we

01:34:10.619 --> 01:34:15.420
talked to over a dozen congressmen senators um

01:34:15.420 --> 01:34:24.039
spoke to a few people in the hss um fda and um

01:34:24.039 --> 01:34:28.779
basically told them our story and and told them

01:34:28.779 --> 01:34:31.960
what's going on and and this is this is what's

01:34:31.960 --> 01:34:34.520
happening you know and i don't know if you guys

01:34:34.520 --> 01:34:37.939
are aware of it but you know this is this is

01:34:37.939 --> 01:34:41.460
happening to me and it's also happening to over

01:34:41.460 --> 01:34:47.199
30 000 american um and every everyone we talked

01:34:47.199 --> 01:34:50.819
to Their jaws dropped and they couldn't believe

01:34:50.819 --> 01:34:57.500
it. So we got a lot of people on board and we're

01:34:57.500 --> 01:35:01.779
going to continue to do that. And I think the

01:35:01.779 --> 01:35:06.899
more people that we raise this awareness to and

01:35:06.899 --> 01:35:11.039
the more people that talk to their local congressman

01:35:11.039 --> 01:35:17.500
or senator or... write letters to the fda or

01:35:17.500 --> 01:35:23.199
to to um you know people that could really make

01:35:23.199 --> 01:35:27.319
a change is is going to help uh significantly

01:35:27.319 --> 01:35:32.819
um yeah i think um one thing we learned in washington

01:35:32.819 --> 01:35:36.960
dc when we went is they just formed I think on

01:35:36.960 --> 01:35:40.079
the House side, so the congressmen and ALS caucus

01:35:40.079 --> 01:35:44.039
were. Oh, really? Yeah. And so that's kind of

01:35:44.039 --> 01:35:46.760
been our big push. Any congressmen that we talk

01:35:46.760 --> 01:35:48.619
to, we just ask them, will you please join the

01:35:48.619 --> 01:35:50.979
ALS caucus and kind of help us in this fight?

01:35:51.140 --> 01:35:54.319
And so I think if people wanted to help, it would

01:35:54.319 --> 01:35:57.500
be to reach out to their local congressmen or

01:35:57.500 --> 01:36:00.279
senators. I'm pretty sure they started one on

01:36:00.279 --> 01:36:05.079
the Senate side also. Annoying. Sorry, Chuck.

01:36:05.079 --> 01:36:09.939
Selfish firefighters with the sirens. But, yeah,

01:36:09.960 --> 01:36:13.439
we're just asking them to join the ALS caucus

01:36:13.439 --> 01:36:17.399
and kind of be behind us in this fight or lead

01:36:17.399 --> 01:36:19.539
the fight. I mean, they have more power than

01:36:19.539 --> 01:36:24.920
we do, obviously. And I think it's working, you

01:36:24.920 --> 01:36:29.899
know. Just the other day, Senator Braun asked

01:36:29.899 --> 01:36:33.710
the commissioner. of the FDA, the new commissioner,

01:36:33.890 --> 01:36:41.550
about ALS and how he plans to attack this, you

01:36:41.550 --> 01:36:46.149
know, terminal diagnosis with no treatment options

01:36:46.149 --> 01:36:55.390
and limited availability to ALS patients. So,

01:36:55.409 --> 01:36:59.130
and that was huge. That was the first time anyone's

01:36:59.130 --> 01:37:03.039
ever done that. So it's working, you know, what

01:37:03.039 --> 01:37:07.439
we're doing and what other ALS advocates are

01:37:07.439 --> 01:37:11.199
doing in D .C. is helping out. And the more and

01:37:11.199 --> 01:37:15.600
more people that get on board and help with this

01:37:15.600 --> 01:37:19.680
cause, the greater effect we're going to have.

01:37:19.859 --> 01:37:25.899
And so I think people always ask, you know, what

01:37:25.899 --> 01:37:28.479
is it that we can do to help? Well, just spread

01:37:28.479 --> 01:37:33.039
the word, spread this story. And share to as

01:37:33.039 --> 01:37:38.880
many people as you can. And join us, you know.

01:37:38.920 --> 01:37:43.119
Join us in this fight. It's really a fight for

01:37:43.119 --> 01:37:47.000
hope, you know. And the more people we have with

01:37:47.000 --> 01:37:51.560
us, the bigger impact we're going to have. And

01:37:51.560 --> 01:37:53.859
they can literally share their story. There's

01:37:53.859 --> 01:37:55.939
going to be a link. You just put it on your Facebook

01:37:55.939 --> 01:38:00.109
page or email chain or whatever. And I think

01:38:00.109 --> 01:38:04.210
that's what I love about the podcast thing is

01:38:04.210 --> 01:38:08.029
you can't listen to you guys talk and then walk

01:38:08.029 --> 01:38:12.609
away and be like, we're invested now. And for

01:38:12.609 --> 01:38:15.670
everyone listening, I make sure this is a completely

01:38:15.670 --> 01:38:19.090
free resource for everyone. So in return for

01:38:19.090 --> 01:38:21.189
this one, I hope that people will just take a

01:38:21.189 --> 01:38:24.109
moment and do that, share. And if they do know

01:38:24.109 --> 01:38:26.210
any people in the political world, reach out

01:38:26.210 --> 01:38:28.369
to them, but also just get everyone around you.

01:38:28.699 --> 01:38:32.699
fired up and educated exactly and and people

01:38:32.699 --> 01:38:37.100
are it it's um it's been amazing the support

01:38:37.100 --> 01:38:39.760
and the feedback that we're getting back and

01:38:39.760 --> 01:38:43.380
people are so willing to help out and and people

01:38:43.380 --> 01:38:47.399
are fired up because it's there's there's something

01:38:47.399 --> 01:38:50.859
wrong with what's going on and you know i'm no

01:38:50.859 --> 01:38:54.420
politician but i do know right from wrong and

01:38:54.420 --> 01:38:58.380
this is this is freaking wrong And something's

01:38:58.380 --> 01:39:01.600
got to change. Yeah, absolutely. All right, so

01:39:01.600 --> 01:39:03.680
on the other side, the GoFundMe, where can people

01:39:03.680 --> 01:39:07.680
find that? Yeah, they can find the GoFundMe on

01:39:07.680 --> 01:39:14.680
our website. It's stevensnation .com. And there's

01:39:14.680 --> 01:39:17.399
a link on there that says, you know, donate now.

01:39:17.979 --> 01:39:20.819
So that's where they can find the GoFundMe. I'm

01:39:20.819 --> 01:39:22.859
amazed you're able to get that website. Having

01:39:22.859 --> 01:39:25.720
got one myself and knowing how they're all bought

01:39:25.720 --> 01:39:28.949
by GoDaddy and all these other... turds yeah

01:39:28.949 --> 01:39:32.489
that's good i'm glad you got that yeah we've

01:39:32.489 --> 01:39:36.590
had a lot of help with everything man yeah we

01:39:36.590 --> 01:39:40.270
could not have done this without the people who

01:39:40.270 --> 01:39:42.390
helped us with the website and and everything

01:39:42.390 --> 01:39:44.390
so yeah it's brilliant but then again you know

01:39:44.390 --> 01:39:47.210
that's the other side of the coin i think so

01:39:47.210 --> 01:39:50.130
many people want to help i think people i truly

01:39:50.130 --> 01:39:52.810
believe people inherently good there's some pieces

01:39:52.810 --> 01:39:56.720
of shit out there we all know them but um And

01:39:56.720 --> 01:39:58.819
they just need to know how. They need to be led,

01:39:58.960 --> 01:40:01.319
you know. So everyone listening, you know, if

01:40:01.319 --> 01:40:03.199
you're looking to do something good in the world

01:40:03.199 --> 01:40:06.000
today, then go to the website and donate and

01:40:06.000 --> 01:40:10.239
share the word, you know, and axe ALS, as they

01:40:10.239 --> 01:40:13.180
say. Yeah. Awesome. Right. Well, I want to thank

01:40:13.180 --> 01:40:16.260
you so much. It's been an hour and a half conversation.

01:40:17.220 --> 01:40:19.420
I'm honored that you allowed me, this complete

01:40:19.420 --> 01:40:22.859
stranger, weirdo Englishman, in your home. But

01:40:22.859 --> 01:40:26.140
I truly hope that this makes a difference. Thank

01:40:26.140 --> 01:40:29.199
you. Yeah, thanks. Thanks for coming. And we

01:40:29.199 --> 01:40:32.020
really appreciate you helping us to spread the

01:40:32.020 --> 01:40:35.819
word because that's ultimately what's going to

01:40:35.819 --> 01:40:40.020
lead to change. So we really appreciate you.

01:40:40.460 --> 01:40:42.140
Yeah, thank you for having us.