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December 1st, and the rest of the year, Shield
15 will still get you your 15 % off. Welcome,
guys, to episode 256 of Behind the Shield podcast.
As always, my name is James Gearing, and this
week I am extremely excited to bring to you Eric
and Amanda Stevens. Now, Eric was a college football
player. He entered the NFL and ultimately transitioned
into the fire service. And when he and Amanda
were about to get married, Eric discovered that
he had ALS, Lou Gehrig's disease. So I sat down
with both of them to hear their journey, how
they met, Amanda's journey through collegiate
soccer, and ultimately the diagnosis, and then
the painstaking realization that there are treatments
out there that are working that ALS sufferers
cannot access at the moment. So you're going
to hear this. It's going to really move you,
but I urge you to take the moment to go to their
website. There is a GoFundMe. Of course, there
is a... contribution element to this. The ALS
patient has a need for certain medical equipment
that may or may not be covered by the insurance
but the other side of it is helping push the
treatment to be released by the FDA. and made
available to these men and women that are suffering
from ALS that will truly save their lives. So
please listen to this episode and then go to
their website. The links will be on the webpage
for this podcast. So jamesgearing .com and then
go to the podcast episode 256 and you will see
all the links that you need to go to. So as I
always say, before we get to the episode, take
a moment, go to your podcast app, subscribe to
the show, rate the show. Five -star rating makes
us even more visible to people that need to hear
this. And this particular episode, everyone needs
to hear this. We need to be made aware that this
disease is... Currently suffered by 30 ,000 Americans.
And that's just our country. That's not including
all the other countries around the world. And
then the other side is take your social media,
word of mouth, email chain, whatever you need
to share these episodes and get these stories
to everyone that needs to hear it. So with that
being said, I introduce to you Eric and Amanda
Stevens. Enjoy. Eric and Amanda, thank you firstly
for welcoming me to your home. For people listening,
where are we sitting right now? Thanks for coming.
We're sitting in my wife and I's home in Costa
Mesa, California. Brilliant. Beautiful city.
Alright, so I'd love to start at the very beginning.
We'll kind of go person by person. So Eric, you
first. Where were you born and what was your
family unit like? I was born in San Pedro, California.
So that's like the Los Angeles Harbor area. My
dad was a police officer. My mom was a phlebotomist.
So we're blue -collared, middle class. And I
was the youngest of four brothers. Brilliant.
All right, Amanda. Same for you. I was born actually
down here in Pomona, California, but moved up
north to Danville. I'm the middle child, so I
have an older brother and a younger sister. Yeah,
and then I just moved back down here to be with
Eric, and my family followed. So now we're back
in Southern California. Brilliant. Brilliant.
Okay, so staying with you then. When you were
young, were you an athlete? Did you love sports?
Yes, I started playing soccer when I was probably
four or five years old and played through, you
know, middle school, high school and college.
And yeah, that's where I met him. So soccer kind
of led me to him. Okay, yeah, I figured that
was probably the case. So Eric, obviously I know
that you were a football player. What was your
kind of journey through that sport? Well, growing
up, I started playing soccer, basketball, baseball.
And some of my really good friends, they were
playing Pop Warner football. And my dad didn't
let any of my brothers play football. So I kind
of had to beg him and just hope that he would
let me play. And he did. He finally let me play
when I was eight years old in peewee tackle football.
And we were really good. We had a really good
team. And we stayed together all the way up to
high school. And after my dad let me play, he
let my other brothers play. They were a little
bit older. Already in middle school and high
school. But one of my older brothers, Craig,
went and played at Cal. And he went on to play
in the NFL, too, for 10 years. So I got to see
and watch him and see what football did for him,
where it got him. really my motivation to keep
playing. And so I kind of followed his footsteps
and played different positions. But I went to
Cal too, played fullback there. And that's where
I met my wife, Amanda. And after Cal, I had a
short stint with St. Louis Rams. I was on the
practice squad for a while, got cut, signed,
kind of bounced around a little bit. And I just,
I realized this is, you know, this is not what
I thought it was going to be like. And I didn't
know if I was going to have a job the next morning
or what was going to happen, you know. So, I
mean, Amanda and I were doing long distance too,
so. I wanted to come back home and find something
a little more steady. And my other two older
brothers are firefighters for LA City. And my
uncle was an LA City firefighter as well. So
I've always wanted to be a firefighter. And it
was just a matter of time. And I felt the timing
was right. The last time I got cut, I called
my dad, I called Amanda, and I just said, hey,
you know, I'm ready to come home, ready to start
a new career. And that's kind of how football
ended and how I started going towards the fire
department. Brilliant. Now, just to go back to
something you said. So, you started at eight
and you were with that same team for 10 years?
Yeah. Yeah. So, we stick together until high
school. And then we had two different high schools
in our local area. And so, some of us went to
one high school, some of us went to the other
one. So, we split up and it was unfortunate.
Neither high school was very good. But if we
were together, I mean, I think we would have
been pretty good. Brett, now what do you think
physically and mentally separated you from other
people that allowed you to play at that high
level? Yeah, I think I've always been super competitive.
And being the youngest of four brothers also,
I think, helped too. I'm sure. I feel like I
was always trying to prove myself and always
trying to keep up with my older brother. So I
always kind of had that. That gave me the advantage,
you know, because I'd be. you know, wrestling
or, you know, playing in the backyard with my
brother and their friends who were two years
older than I was. So when I would go play with
people, you know, kids my own age, I was kind
of on another level, you know. So it definitely
really helped me. And I got to kind of see and
learn from them and what mistakes they made.
I've always been kind of a visual learner, so
I've always watched my brothers and just learned
from them, constantly learning. Brilliant. Now,
with your career, I read somewhere that you injured
your knees at some point. What was the injury
and how were you able to rehab that? I did. So
this is my sophomore. Somewhere you're going
into my junior year of Cal. I was the top -ranked
fullback that year. And your junior year is a
real big year as far as, you know, as far as
getting tape for the next level NFL and film.
It's a really big year. It kind of sets up your
senior year. Actually, the first day of pads
in fall camp going into that season, my foot
got caught in the turf funny, and I was going
out for a pass, and it just tweaked funny, and
I fell back. Popped it and I tore my ACL. Oof.
Yeah. And my ACL and meniscus. Okay. And the
rehab, it's a long rehab. Six months minimum.
The trainers and staff were awesome though. And
we just stayed on top of it. And I just had next
year on my mind. You just have to keep the...
Yeah, you have to keep that in mind as far as
working towards that goal, knowing that you have
another year, knowing that the team still needs
you. And that's kind of what I did, and that's
what motivated me to get back to my teammates
and my coaches. Right, because you were the captain
at Cal, is that right? I was my senior year.
Senior year, okay. yeah so all right well amanda
let's go to you so you said you played soccer
lead me in through your college career and how
you guys met okay um yeah i got recruited from
cal my junior year of high school um so i committed
kind of early and went in my freshman year and
actually blew my knee out too um so i had to
redshirt my freshman year at cal um But like
Eric just said, you know, the trainers there,
the coaches, they're all so supportive and they
work hard to get you back and you just try to
keep that positive mindset and attitude. So I
played sophomore, junior, senior year at Cal
and I was captain my senior year as well. A couple
of overachievers. We got to the NCAA tournament
every year I was there. I don't know, I feel
like there's this curse against us where we can't
get past the second round. But still, my senior
year was probably one of their best seasons in
a long time. We had like 16 wins or something,
which is something that the program, they don't
get that many wins that much. But yeah, Eric
and I met my sophomore year at Cal. We kind of
knew of each other because he was a year older
and hung out with a lot of the soccer girls his
year. And so we knew of each other just through
mutual friends. And I think we might have ran
into each other one time before we actually officially
met. I was walking up the street and he was walking
down. It was after the big game. So Cal versus
Stanford. I think Cal lost. Yeah, we lost. We
lost pretty bad. But I stopped him because I
kind of knew him and just gave him a hug. And
he invited me to a party later that night. And
so I went. And then, yeah, we've been dating
ever since. Now we're married. We've been together
ever since. Brilliant. So we're going to get
to the fire department again in a second. But
as far as career, what about your path? So after
Cal, I went to St. Mary's actually and played
my fifth year of soccer there while I got my
teaching credential and my master's. So I'm a
second grade teacher right now in Costa Mesa
where we live. And I've been at this school for
four years now. I love it, yeah. I've taught
second grade and fifth grade, but I think second
grade's where I belong. Yeah, the little ones.
Now, is there anything, I actually had a teacher
on a couple weeks ago, and anything that I think
we can do better, if we can learn from other
countries, for example, I try and discuss it
on here too. On your perspective, what are the
things you think that we do well and some things
that we could improve on in education? Yeah,
I think... What my school and just, you know,
through my teaching program, what we really focus
on is just differentiating the instruction to
really target each student. I think, you know,
you can't just teach to the whole class. It really
has to be differentiated for the group of students
that you have. And I think, like, I use a lot
of hands -on. activities or lessons to really
keep them engaged. I think that's a really hard
thing as kids are at school all day long and
you need to keep them focused and engaged and
having fun or else they're not going to want
to be there. So I know my partner teacher and
I in second grade, you know, it's a lot of addition
and subtraction and just working on like sentence
structure and things. So we try to make it really
interactive for. And I think that helps them
learn is just being engaged and having that hands
on experience. So that's something we try to
do. And I think it's helping. But yeah, we just
started a new kind of curriculum a few years
ago. It's called the Common Core, where it's
not really memorizing, but more really explaining
your thinking. So it's not just like five times
three is 15, but kind of why that is. The answer
not. So it's not really so much about the answer.
It's how you get the answer. Yeah. So that's
difficult. That's hard, though, for kids to grasp.
So that's been a challenge. It's hard for parents
to grasp. Yeah, I've heard. I've seen some pretty
funny Common Core memes. Like, you know, I'm
just helping my kid with his homework. Apparently
one chair and a badger equals Venezuela. Yeah,
yeah. I know. Sometimes we'll have to look at
the teacher guide like, oh, goodness, I don't
even know the answer to this. It's sad. I was
embarrassed how young my son was where I'm like,
you're going to have to ask someone else. I'm
going to make it more confusing for you. I know.
All right. Well, speaking of education, we'll
go back to Eric. Coming from, you know, high
level athletics, what was the academy like for
you? The fire academy? The fire academy, yeah.
Yeah, it was. It was tough, I think. As far as
physically goes, I felt pretty good because of
my history of football and athletics. And I was
fortunate enough to be accepted into the academy.
You know, pretty close to... Or, you know, pretty
short after playing football. So, I was in pretty
good shape as far as physically. But, you know,
mentally, I think is the hardest part, you know,
of the drill to our academy. You know, the pressure
that the instructors put on you and the staff.
And you're also learning a completely new language,
you know. That part was difficult. But you have
your classmates that you lean on and everyone
works together as a team. And ultimately, you
know, that's what gets you through it. But it's
a long... Long, strenuous drill tower for sure.
How long is LA's? How many weeks? It's five months.
Five months. Yeah, it's five months. Are you
certified when you enter that or are you non
-certified? You're not certified, yeah, so until
you finish. And then you have a year of probation.
In the field, you do three different houses.
So, but, yeah, I mean, Amanda could tell you,
too. I mean, it's stressful. That's a long five
months of just grinding out, you know, learning
a whole new language, sleep. You're up early
in the morning and home late at night. Especially
LA traffic. Yeah, exactly. So, yeah, it's every
day. And studying, memorizing. I think I could
probably do a lot of the drills or whatever because
we practice so many times. Yeah. Well, I'm not
the best public speaker, so I have to memorize
everything. So I would just give all my drills
to Amanda and my note cards, and I'd read them
to her, and she would read them off. She spent
countless hours helping me. Yeah, I definitely
couldn't have gotten through without her for
sure. Yeah, I can relate. I could put the ladder
up, but I couldn't remember the words I was supposed
to say while I was putting the ladder up. Exactly,
yeah. I'll put the ladder up a million times,
but yeah, it's just when it came to memorizing.
The monologue. Monologue, yeah. exactly so it
was interesting as well i had a conversation
just the other day and we're talking about um
individual sports and team sports and i forget
who i was talking to but he'd been a wrestler
and he played football and i found that with
a fire service um you know i did martial arts
and fought and it would be part of a team sometimes
but it's just you and that other person on the
mat at that time and that's kind of what it's
like is we're part of that group but each of
you have those individual responsibilities so
you know i think it's it's uh you can glean a
lot from being an individual athlete and a member
of a team either of those tracks if you have
both even better yeah absolutely yeah that definitely
helped um the transition from being a football
player to being a firefighter as far as the team
aspect and everyone has their role um and everyone's
role is equally important you know um so That
transition was easy as far as the team aspect
and knowing your role and being someone that
you can count on and accountability and trustworthiness.
That's huge. I'm sorry to interrupt, but what
about, so you were captain, Caltech, you were
NFL, now you're a probie. What was that like
for you? I mean, ego is the wrong word, but,
you know, for realizing that you're now bottom
of the pile. Yeah, well, it was, I mean, there's
times, you know, you just, you want to do something
or you want to say something, but you know your
role, you know, and everyone goes through it.
And it's a rite of passage, you know, you earn
it through. working hard, keeping your mouth
shut, and just going to work. And that's what
I did when I played football, and that's what
I did as a firefighter too. You know, when you
play football your first year, unless you're
a rare exception, you're on the scout team. You're
at the bottom of the totem pole. You have to
earn everyone's respect, and you work your way
up, and that's the same thing as the fire service.
Start from the bottom, and you earn people's
respect through hard work and giving everything
you have. You just, you know, big ears, big eyes,
and a small mouth, and that gets you through.
Yeah, absolutely. And which apparatus were you
assigned to in the end? So we were, on probation,
you do an engine house, and then for three months,
I believe, then you do your truck house, and
then your third house is kind of like your 800,
what we call, or your ambulance. Oh, okay, rescue.
Yeah, like the BLS rescue. But we rotate. Our
department rotates. We rotate engine, engine
truck. And then I was in a hazmat station too.
So we also rode the hazmat squad. And we didn't
have a BLS rescue either. So we were all fire,
all fire side. We had ALS rescue, but those were
the paramedics. Okay, so was it separated in
LFT? Are the ALS rescue medics fire medics or
are they just medics? So some stations have a
single function medics or you have a rotation.
Our medics were single function. It just depends
on what station you're at. All right, so I guess
we'll swing it back to you, Amanda, from through
your eyes during obviously... um leading up to
the wedding like when did you realize that everything
wasn't exactly the way it was supposed to be
and then kind of talk us through you know the
wedding and then that point yeah so um i want
to say a few months before the wedding maybe
around march or april um he would say little
things about his left hand just feeling kind
of weak um but we didn't think anything of it
or you know maybe he like tweaked it when he
was working out because we were working out pretty
hard for the wedding um as we all do yeah we
were trying to get skinny to the photographer
um so we didn't think much of it um or like if
there was something in the kitchen i couldn't
open a bottle i would go give it to him and he
i would see like he'd maybe try it with his left
hand and then have trouble so then switch it
to his right are you left -handed No, no, I'm
right. Right. Yeah. But didn't think anything
of it. And then I also remember one day, again,
after we were working out, we were sitting in
the car and he's like, whoa, look at my arms.
And they were twitching really bad. But we just
thought maybe he worked out too hard or he was
dehydrated. Yeah, again, we didn't think much
of it. So and I'm pretty sure it ended up going
away or maybe not just being that like intense.
And so he didn't really tell me much more than
that. Just little things of him saying it out
loud or me seeing the twitching one time. So
I didn't think anything of it. And then. We had
our wedding on July 27th in San Luis Obispo,
which is kind of like a midpoint because a lot
of our friends are up in Northern California
and then a lot of our family lives down here.
So yeah, it was a perfect day. It was awesome.
It was really special. And then we went on our
honeymoon to Montana. Eric's always been like
an outdoorsy. who had been wanting to go to Montana
his whole life. So we had a really great honeymoon.
We went to Yellowstone and Glacier. We did horseback
riding, fly fishing, whitewater rafting. It was
great. And again, he didn't tell me anything
and I didn't notice anything. And his brothers
and his dad... you know, would talk about his
speech sometimes, but I talked to him every day
and he's always been somewhat of a mumbler. So
again, I just didn't really notice because I'm
talking to him all the time and it just wasn't
something that I really realized. So it wasn't
until we got back from the honeymoon when he
showed me the twitching in his arms. And what
did that start? Maybe during the honeymoon or?
That twitching? Yeah. Yeah, I mean, it was before
that. Yeah. Yeah, I think it definitely progressively
got worse. Yeah, so just interject then. So from
your internal experience, when were you noticing
it? Yeah, I was maybe probably low before March.
I was at work, and I just, I noticed, you know,
We'd go to a fire, and I'd just be more fatigued
than usual and run up to seeing her call, and
I'm already out of breath, and I'm trying to
catch my breath. I'm like, man, this is weird.
I must really be getting out of shape, and I'm
29 years old, and all the older guys are like,
yeah, hey, kid. Wait until you're in your 40s
or in your 30s. You're really going to feel it.
This is what all the guys are talking about.
I started dropping tools, mainly in my left hand,
picking up a saw. It was becoming difficult dropping
wrenches while I was working out. I noticed.
I was dropping dumbbells, slipping out of my
hand, and I'd go up to do pull -ups, and just
my left hand would slip out. And like Amanda
said, I've always been sort of a mumbler, but
guys at work, my dad, my brothers, noticed my
speech becoming... slurred or slow and i noticed
that too um but i really didn't think anything
of it and it did slowly get worse um and our
wedding was coming up too so we're our main focus
was the wedding and i didn't want to bother anyone
or create unnecessary stress if if it was no
big deal I just figured it was an old football
injury or something. But every now and then I'd
go on Google, I'd search, you know, some of these
symptoms I was feeling or having, and ALS kept
popping up. And I didn't really believe it, you
know, at first, but as kind of time went on,
weeks or days, I would just continue to search
and do more research. And I just started hitting
every single box. And that was probably right
before our wedding. And then, so we had our wedding,
went to our honeymoon, like Amanda said. And
as soon as we got back, I think the day we got
back, I said, you know, hey, Amanda, this is,
This is what I think might be going on. I'm checking
every single box, and I know it's extremely uncommon,
especially for someone my age. But it's just
the symptoms are just too close and too exact
to everything I'm reading. So we need to see
a neurologist right away. family doctor and just
went straight to a specialist. Good idea. Yeah.
Cause it, yeah, as you know, it's just a long
process, you know, it's like you gotta wait three
weeks to get an appointment and then three more
weeks to get an MRI and then another two months
to get another MRI. So I'm like, you know what,
let's skip all that and let's just go straight
to it. I think I know what's going on. I'm obviously,
I'm hoping it's not, but. In the back of my mind,
I have this feeling. And so we got an appointment
as soon as we can with a neurologist, and we
got an MRI, and they do what's called an EMG,
which shows your nerves and nerve activity within
your limbs and your neck, your back. And the
MRI looked good. And when we went back in to
discuss the MRI is when I got the EMG done. And
as we're waiting for the EMG results, it's probably
like 30 minutes or so, the doctor doesn't say
a word to us. We're just sitting in the room
with him, and he's typing on his computer. Doesn't
even look at us, you know, for probably about
a half hour. And I'm just like, hey, doc, you
know, everything looking okay or what's going
on? And just no response, very short. And he
turns around and it's probably about 40 minutes
now. And he goes, well, I think you have ALS.
He goes, I'm sure you guys heard of it. Lou Gehrig's
disease you have a two to five year life expectancy
and um that was it pretty much he's like good
luck and you know we'll see you later and he
left the room so we were in the room with him
for probably about an hour he said maybe five
words and that was you have ALS you know and
good luck You know, that reminds me, I had a
widow of a firefighter who died of cancer. It
was the same thing with them. Doctor goes, yeah,
you got it. It's terminal. You're probably going
to die, you know, this amount of time. And pretty
much was like, all right, there's a door kind
of thing. And that's, you know, we talk about
bedside manner and you hear this. And again,
there's some great doctors out there. that's
unacceptable to have that kind of diagnosis and
not not you know not only should you be engaging
you guys but also immediately bringing in resources
to be like okay this is the diagnosis but here's
step one here's what we're going to send you
next exactly there was no further plan after
that it was he left the room and he and uh that
was it i mean when he told me that I almost passed
out. Yeah, I had to, like, run over. He didn't
even, like, prepare us or anything. I mean, I
had to literally run over and hold him up. Like,
he just turned white. And, yeah, it was horrible.
And then the doctor looked at me and was like,
I'm sure you know what it is. Like, yeah, it's,
like, so hard to go back to that day because
we tried to, like, block it out. But it was the
most horrible experience. Yeah, it was bad. Yeah,
so after that, obviously that's a huge blow.
Although I had a feeling that's what it was,
you're never fully prepared to hear that. No,
that your life might be shortened considerably
is not exactly news. Right, and it's two to five
years of a very difficult life. Paralysis comes.
a lot sooner. I'm sure you can just hear my voice
as I talk. I'm slowly just kind of losing my
voice and having a lot of hard times speaking.
But with a diagnosis like this, you have to get
second opinion, maybe three, maybe four. So the
unique thing about ALS is that there's no real
definitive um tests that that says okay this
is als they kind of have to rule everything out
so i called my team doctor who is now the team
doctor um for the los angeles rams and and i
said hey doc you know this is what's going on
they just told me i have als um basically diagnosed
me you know within two weeks um And he goes,
that's crazy. You don't diagnose someone with
ALS in two weeks. There are so many other tests
that you guys have to do. I'm going to set you
up with a neurologist at Cedars -Sinai in Los
Angeles. So I ended up getting along with them
and much more thorough in understanding. sympathetic
you know professional right just just to be able
to sit down with me and my wife my brothers my
dad and explain to us you know this is what ALS
is I can see why that neurologist came to the
conclusion but let's roll out all these other
things first you know so we did that we did a
lot more blood tests we did another MRI And ultimately,
you know, everything came back clean and everything
looked good. So, basically, that, you know, means
you have ALS. So, we come to find out that, so
with ALS, there's two FDA -approved treatments
or medicines, and they may or may not extend
your life by 30 days. So a lot of people, a lot
of patients don't even take the medication. How
do they even gauge that they're improving in
30 days? When there's a variety in how long people
are living, certainly I'm sure by a few months,
how can you even proclaim that you're adding
30 days? That seems crazy. And that's so difficult
about ALS and it's becoming a problem right now.
And we'll get into it, I think, in a little bit.
But there's no biomarker. Everyone's different.
Everyone progresses at a different rate. And
there's no way to really tell or judge. They
have a sheet called the ALSFRS. Yeah. And that's
how they judge. And it's a real basic physical.
They just grab your hands, test your grip strength,
ask you a few questions. And that's how they
gauge the test. And every time we've done it,
it's been a different doctor or an intern. So
who's to tell you that, you know, that doctor
feels a different grip strength? You know, it's
stronger on pulling your arms down. It's very
subjective. And that's been really frustrating
because what we learned also was that for the
first time ever in 150 years, there's treatment
that is slowing the progression down, legitimately
slowing the progression down. And some people
are even having... reversals mean they're getting
better improving and that's that is huge in the
ALS world really in in the whole medical world
and but the only way you can get to is if you're
picked for the trial and it's a it's a brainstorm
treatment or sorry it's a stem cell treatment
by a company called brainstorm and it's it's
a The treatment's called Neuron. And they're
on the Phase 3 trial right now. And so it's been
in the FDA process for almost 10 years. And they
do a 50 % double -line placebo. So 100 people
are getting the treatment. 100 people are getting
sugar water. putting their back but they don't
know and you don't know until the whole the whole
trial is done um it's not just like a pill that
you take it's a it's a year -long process and
it's very like um like intensive on your body
where it's you know there it's a bone marrow
aspiration so they extract your bone marrow and
then they spin your stem cells with their their
own medicine and then they put them back in and
you have to stay in the hospital overnight and
do all these procedures. So it's not like you're
just taking a pill. It's impacting your body
a lot and it's a year long. And ALS patients,
we know they don't have a year to waste if you're
getting sugar water in your back. Like you said,
especially if you're getting, because I think
the bone marrow, isn't it pulling from the hip?
Is that right? It's supposed to be extremely
painful. Go through all that. Oh, by the way,
you had the sugar water. Exactly. Thanks for
all the pain and trouble. Exactly. Thanks for
helping science out. Yes. It's crazy. The donation
is appreciated. Yeah. It's absolutely insane.
I couldn't believe it. So here the doctor tells
you, hey, well. guess what there's treatment
and it's working first time ever but you have
to meet the right criteria which is a six month
lead -in phase just to see if you're progressing
fast enough or slow enough to be meet the perfect
criteria and then if you do accept it it's a
50 chance that you that you get the treatment
um so to hear that there's treatment that is
working and helping people for the first time
ever, but you can't access it is, is, uh, for
a terminal diagnosis is just crazy to me. And
I can, I, we can believe it. So, um, really,
you know, uh, especially in a phase three part
of the trial, which means that It's already deemed
safe in phase one. In phase two, it's proven
that it works. So it's safe and it works. So
why aren't people getting the treatment yet?
People with ALS, there's every 90 seconds someone's
dying from ALS. Every 90 seconds someone is diagnosed
with ALS. There's over 30 ,000 Americans right
now. living with it, dying from ALS. And one
in six people with ALS are a veteran. If you're
a first responder or an athlete, you're two times
likely to get ALS than your normal person. Do
they think there's a connection with TBI and
ALS? So they don't know exactly. My doctor seems
to think that. My history of football, concussions,
definitely has something to do with it. But no
one can tell you and pinpoint exactly what causes
ALS. They think it could be from head trauma,
stress, environmental exposure, some sort of
toxin. But they can't pinpoint what exactly is
causing the disease. so that's kind of what we
learned at our second visit was that holy you
know holy moly there's there's you can say shit
yeah yeah holy shit there's there's treatment
out there and there's a there's a chance to save
thousands tens and thousands of people but and
it's safe and it works but no one's getting it
because They have to collect data for two years?
When the FDA has approved many meds that we know
were very unsafe, that they gave to not terminally
ill people. Exactly. So the more research we've
done, we found that treatment for ALS is in the
same line as treatment for a headache or arthritis
or erectile dysfunction. It's in the same process.
So they treat ALS the same way and it takes the
same amount of time to approve that drug. There
has to be something different. That system is
failing terminally ill people. Specifically,
you know, right now with ALS, it's like the FDA
has the ability to fast track or approve something.
uh medic medicine if it's safe and it works and
you know they feel that it's it's gonna you know
help a lot of people but for some reason als
has like been forgotten it's like the and we're
just like left in the dust here so and 30 000
people that's not this you know crazy out of
left field diagnosis where you know you hear
these like five people on planet earth have this
thing but 30 000 i mean if 30 000 children were
killed in schools the impact that would have
you know you know 30 000 victims of a terrorist
attack or and it's you know when you put it in
that perspective and look at the obesity crisis
here we focus so much on schools and we should
but we're losing hundreds and hundreds of thousands
of americans through all those things which are
also you know those are preventable Like it's
not ALS or pediatric cancer where you're trying
to figure out, well, where the hell did it come
from? Obesity, you know, all these, you just
change the way you eat and you move. It's that
simple. So that's what's frustrating to me hearing
your story is all these meds get approved that
shouldn't even be needed if we were teaching
people how to eat and move. And yet pediatric
cancer, which is a fraction of the overall cancer
budget, where again, I think most... Adult cancers
are, again, environmental and things we put in
our body. The pediatric one where these little
babies have no way of eating McDonald's and starting
to screw themselves up, they get a fraction of
the research, and it's the same with ALS. Yeah,
it's incredible. ALS has become more prevalent,
and people are getting it younger and younger.
A few weeks ago, a 15 -year -old was just diagnosed
with ALS. And the average is, what, like 40 and
50? Is that right? They say between 40 and 70.
70, okay. Yeah, that's the average age. But every
once in a while, you know, you have 15, 9, 16,
29, 20s. It's just... It's not as common, but...
So that's kind of, you know, what we've really
been focusing on right now is spreading awareness
and trying to, you know, show the world that,
hey, this is what's going on. This is real life.
People are dying every single day. And there's
treatment there that could potentially help and
save. thousands and thousands of lives but no
we don't have access so like something's got
has to change you know this is it's really it's
inhumane you know um especially the way they
treat the the clinical trial you know there has
to be a way to be able to do trials where more
people are getting the treatment right i mean
doing a 50 double blind placebo on a terminally
ill patient, that is insane. It's crazy. Or like
you said, if you're doing this research, you're
realizing that this one is working, then maybe
people that are progressing deeper in, give them
a damn treatment. And then maybe some of the
newer diagnosis, ethically maybe you could say,
well... we'll do it on here but yeah you had
to have that knowledge and that that possible
way of saving lives and just to withhold it especially
you know a year of treatment i mean that just
doesn't make any sense to me at all especially
with a year it doesn't sound that much to someone
who maybe has a life expectancy of 89 years a
year to someone who maybe has a life expectancy
of three years that's horrendous yeah and so
Another thing that blows my mind is the patients
that received the treatment and they got better
from it, as soon as the trial's over, they don't
get the treatment anymore. So we became real
close to an ALS patient. His name is Mark, and
he was in the beginning of the Phase III trial.
Received the treatment, got a lot better, was
able to talk a lot better, was able to walk much
better. So you're talking reversal, not even
slowing of the decline. Not even just slowing,
yeah, a little bit straight reversal. And as
soon as they finish, as soon as he was done,
they cut him off from the treatment. And now
he's nine months from his last treatment. and
he's progressing again. So here's a guy who literally
had a reversal, and now he's feeling himself
go right back to where he was. It's just so crazy.
I mean, I don't know how you were allowed to
use those people for a year. So how are you not
allowed to put in the claws, even if everyone
else is screwed? That 50 % who actually got it,
who are improving, how are you not allowed to
say, well, Those people can still do it. But
I don't know. How can you sign the piece of paper
that says, yes, I agree to pull that out? So
you have no choice. You have to sign the paper
because when you receive the diagnosis that you
have ALS, right now you have a 0 % chance of
survival, 100 % fatality. So your best shot.
is getting this 50 % chance of treatment. So
your only choice is to sign that paper. No, I'm
talking about the medical community to sign the
paper saying, let's stop that. Oh, no, of course.
I mean, everyone's going to sign it to come in.
But I'm talking as a person, whether it's higher
above the research community, whatever it is,
or a group of people that have said, we consent
to, even if this is working, to withdraw it.
And ethically, I don't know how you could even
sleep at night. No, I know. So it completely,
I mean, it totally blew my mind. Amanda, too,
and my family. And it seems like everyone we
tell this to, it's like their jaw's on the floor
also. I mean, we didn't know any of this was
happening until you're literally thrown right
into it. So that's like what we've been fighting
for. That's our mission. Our goal is to educate
people on what's really happening here. It's
like, yeah, this is a really sad story. And we
just got married and, you know, my husband has
ALS. But also there's something there that can
help him. And this is what's going on and he
can't get it. And so, yeah, I would say that's
like our true story is no. you know, we can save
him and 30 ,000 Americans as well. And that's
kind of what we've been fighting for and what
we've put all our energy into because with a
diagnosis like this, it's hard day by day to,
I mean, you never forget about it, but it's hard
to move on with your normal life. So yeah, that's
where we're channeling all of our energy. I think
it's a really good idea. So a few years ago,
I myself put myself in a bathtub full of ice,
filmed a funny video, challenged three other
people, and that was it. I'd done 22 push -ups
because we lose a veteran every day to suicide,
and that was it. You know what I mean? And I
talk about this now. Those things, the fact that
beginning a conversation, well, that's great,
but they're also missing the fucking point. Excuse
my language. They're completely missing the point
because... And we're not trying to get a bunch
of videos of people jumping at ice. We're trying
to get people to, you know, and again, not trying
to get people just to throw money mindlessly
at a GoFundMe either. We're trying to get people
to understand, and I do it with this project
with all the elements of health that we have
on it, to get so angry that they do something.
And, you know, I hope this helps with you, but
I've learned something sitting here. I didn't
know there was a drug that, you know, that is
going to work. of course there's a fundraising
element to it as well but i think there's more
power and a whole bunch of angry people saying
you need to change this you know to their politicians
or whoever it you know it takes and i think it's
the same with the fire service and other areas
too but um yeah we need to stop trivial physical
challenges and start going I need to look into
this, you know, and I think that what you're
doing is what needs to be done. You know, it's
with, you know, the AIDS epidemic and all these
other diseases. It took usually a brave man or
woman to kind of be that beacon, be like, this
is what it's like. This is what we need to fix.
Yeah. So, yeah, I mean, you brought up the HIV
and AIDS epidemic. We're in a very similar situation.
First time ever, there's treatment that's helping
people. And we just have to get access to them.
We need to raise awareness, and there has to
be some sort of change. And like Amanda was saying,
that's what we're doing all this for, is for
that reason. And the fundraising, like you said,
aspect. is is important too but the what's most
important is getting the awareness out there
telling the true story and letting people know
that hey this is really going on this is this
is real life you know um and this treatment this
this one specifically neuron um is just the closest
to being approved so that's one we're really
really fighting for but there's over a dozen
behind it. That might be even better. That might
be better, exactly. But as long as they're stuck
in these crazy, long, drawn -out trials and phases,
over hundreds and thousands of people are going
to die from ALS. Unless we change this pathway
to gain access to these treatments, people are
going to be dying. And that's the harsh reality
of it. it is well so going back to the fundraiser
though so my big thing with fundraising in general
is we do hear of these organizations you know
so much of it goes to what they call administrative
costs and we see you know these people going
on vacation and all this stuff with tech with
the money with you specifically though there's
obviously you know god forbid there's a decline
there is definitely equipment that's needed so
you know tell me specifically what a patient
in general with als would need as they go through
that timeline yeah so um right when i got diagnosed
the first thing that came to my mind was i don't
want my wife to suffer i don't want my family
to be in debt um because of me you know and als
is extremely expensive it is a As you decline,
you need a ventilator to help you breathe, a
trach tube to feed you, full -time, 24 -hour
round care. It's estimated that it's around $300
,000 a year to take care of an ALS patient. A
lot of ALS patients put their family in debt,
far in debt, and a lot of people choose not to
live because of that. So one of the first things
I said to Amanda, my dad, my brother, I said,
you guys aren't going to suffer because of me.
So let's do everything we can to raise money.
for treatment and also awareness. Once we have
a safe amount of money put away, then we can
start focusing on putting our money that we raised
to a foundation or a research organization. who's
doing the right thing, you know, who's looking
for a treatment, who has the right program, you
know. So a lot of what we're doing right now
is, you know, we meet with a lot of different
people and we're sort of trying to sort it out
and figure out who's doing the right thing, you
know, who's using the money the best, who's putting
it towards treatment and finding a treatment.
That's going to help ALS patients now, you know,
not 12 years down the road. We want to find someone
who has that sense of urgency that I do, you
know. That you need to have this particular disease.
So finding people that get that sense of urgency
is difficult. And unless you have ALS or a family
member has been affected by it. They don't know,
you know, they just, they don't think about that.
They don't have that urgent, let's help people
now. There are a few out there that do, and that
too we plan on partnering up with and helping
and, you know, getting things pushed forward
faster. But, yeah, that's sort of the fundraising
aspect of it. Yeah, and that's, again, with what
you're talking about, there's a direct, every
single penny of that dollar is going to go and
contribute to what is ultimately needed. As a
slight tangent, you've got the, like you said,
the average age diagnosis. I think one of the
most famous cases is Stephen Hawking, who left
fifth. My memory serves me right from the movie.
He was like 20s when he got it. But his life
expectancy was incredible. Do you know what the
difference was? Was it just luck? Yeah, I mean,
he just had a slow progressing form of ALS. And,
I mean, yeah, he lived until he was 70, I think,
right? Yeah, around there. But those weren't
good years. That's a very difficult, that's a
hard way to live, you know. But he did make it
that far and he's an extremely rare case and
probably one of the only people ever to live
that long with ALS. And it seems like that individual
being so cerebral anyway. as devastating it must
have been to lose his physicality had so much
going on here he's probably able to deal with
it right whereas most people when we lose this
i'm sure exactly like right i mean that i mean
simon hawkins like that guy's amazing um and
like you said he's so so smart you know like
for me it's like my whole life i depend on my
my body you know my strength and in hands everything
i've done i've done with my hands and my arms
and my legs you know not to say i'm not not smart
but i've definitely more of a you know physical
kind of person you and me both trust me yeah
i wouldn't want to be left with my thoughts yeah
why can't chickens fly yeah um but yeah So. That
was crazy to me when I heard about all of this.
It's like your whole body shuts down, but your
mind and your brain still work perfectly. You're
just trapped. It's cruel what it is. It's so.
It's extremely evil disease. I mean, it is like,
I mean, it's a nightmare, 100%. Yeah. Now, we
want to move on to positive things that are working
and going to be it. But I just had a conversation
with a palliative care physician. I've had on
twice now. And one of the areas that we're all
terrified of talking about but I think has value
is choosing the day that you die if it comes
to that point. And ALS was one area that he discussed
was actually an acceptable, applicable thing.
obviously not you we're sitting here having a
conversation things are great today and all today
is all we have but have you seen in that community
that um you know some people do choose to do
it before there's that complete diminishment
of their their physicality yeah yeah i i try
to stay on that literature i try not to go down
that road but you can't help but think about
that you know um that's just the reality um I
have heard of instances where people choose not
to live and leave this life early. But as of
right now and the way I feel, I still have tomorrow.
I still have the next day. Not everyone could
say that. I think choosing life, And living this
life the best that we can is worth fighting for,
you know. And that's exactly what we're doing.
We're fighting for this life and also over 30
,000 Americans who also are going through the
same thing. I mean, this is a lot bigger than
me. This is about everyone, you know. I'm fortunate
enough to sort of have this platform because
of my history in sports and the fire department,
which has been amazing. The Brotherhood and especially
around the world has been rallying. And it's
given us this incredible platform. And I feel
very grateful and just so fortunate to have it.
And I want to do everything I can to help. The
mass of people that have this disease and they're
going through this because they don't have to.
There's a treatment there. It's working. This
could be stopped. We just need to fight for it.
Absolutely. It's amazing seeing the movement.
The Axe ALS movement is freaking awesome. Yeah,
it's really cool. Talking to Ellen and all these
different people. So like you said, there's many
people, sadly, that get given a platform and
they do nothing with it or bad things with it.
Today, things are good and you have this opportunity
to really advocate for the people that have a
voice. And I think if you get enough people angry,
and there's so many things that we need to step
up and do, we've let... douchebags in suits run
our country and our health care and it's you
know it's not working so we need to get our people
angry enough to shake the tree and be like nah
this is unacceptable you know and i hope that
the right people saw ellen saw the news reports
listen to this whoever that are able to influence
them and maybe you know push that through yeah
yeah that's what we're open to right well going
to what you can control today um You know, we
discussed before we started talking about some
things that you realized that you could improve
in your lifestyle. So what are some of those
that you've done as far as nutrition and supplements?
So a lot of the research we've been doing was,
you know, ALS is a inflammatory disease, right?
It's a rubber band. So there's inflammation going
on in your brain and it's triggering. you know,
this neurodegenerative disease. So anything that
you can do to decrease inflammation is going
to help with symptoms, help with progression.
So it all comes full circle to diet, what you
put in your body and what you're eating and what
kind of vitamins, proteins, amino acids, supplements.
That can help with that. And so what my wife
and I are doing is a diet called the Terry Walls
Protocol. So very high in vegetables. You can
still have meat, but it's grass -fed organic
meat or organs. Which are really high in vitamins
too, like the liver. High in iron. Yeah. So that's
kind of what we've been focusing on right now.
Just, you know, our diet and trying to eat better
and decrease that inflammation. We have a sauna
in the room next door. So trying to, you know,
just detox. Sweat out the toxins and just getting
the good stuff in, the bad stuff out. Have you
done any of the ice bath, cold showers, anything?
Ironically, ice bath with the ALS. Yeah. But,
I mean, I wonder if that cold contrast would
be good for inflammation too. Yeah. So, I mean,
when I was playing football, I lived in the cold
bath and hot tub. That was like what got me through.
And so, it's funny. As soon as I got this diagnosis,
I was like, I just craved ice bath. I just wanted
to go to the ice bath so bad. So, yeah, I've
been doing ice bath and the sauna too. And I
think it helps. It's hard to tell. I definitely
feel like I'm progressing still, but I don't
know if I'd be progressing faster if I wasn't.
So that's the unique thing about ALS. It's really
hard to... pinpoint what's working or what's
not or what's you know maybe causing you to progress
faster so it makes me feel a lot better that's
for sure um is it slowing the progression down
i'm not sure i think it's just a little early
to tell you know i think i'm four months into
this so um i do feel better while i'm doing it
and yeah So that's mentally I feel good. It's
hard to tell as far as physically. So I think
time will tell. Now what about you take CBD and
CBG? You just learned about today. Yeah, so I
take CBD before I go to bed. It kind of just
helps me relax. It helps me to sleep. And then
CBG is very similar to CBD. It doesn't have that.
that psychoactive THC does it's just and it's
been helping it definitely helps we have like
a CBD rub too that I put on my arms that helps
with twitching and fasciculation but I have read
a lot of good stuff about THC with ALS too but
As a firefighter, we get drug tested. I've gotten
to stay away from that. Growing up, my dad always
taught us, stay away from marijuana. You can
drink beers, but don't smoke pot. I had this
engraved in my head. marijuana is bad stay away
from it but um if the more research we've been
doing it seems like you know people are having
a lot of success with it so and that's what we
were talking about before we started recording
it's it's sad that our hands are bound you know
and you and i both know you could be prescribed
opiates and you come drink when you get home
every night No one's going to bat an eyelid,
but God forbid you take THC, you know, then the
world loses its mind. And I hope you personally
are able to get a point with your employer that
they're able to make an exception. I mean, you're
not running calls at the moment anyway, you know,
but what if it works well? You're doing everything
else right. Whether, you know, you have no gauge
of it slowing down, but you know damn well you're
not accelerating it. You know, you're eating
clean and taking the supplements, but I mean.
I've heard some incredible things about THC as
well. And, you know, what have you got to lose
apart from someone telling you because of some
racist, you know, dude in the 1930s that demonized
marijuana that you can't try what might be another,
you know, incredible benefit to slow down ALS.
So I hope that's resolved too. Yeah. Yeah, definitely.
Right. Well, I'm going to go to some closing
questions because I've been going. whatever an
hour now exhaust you no that's that's didn't
seem like that long it seems like it's going
off pretty fast yeah it usually does yeah someone's
a look at my um but uh so the first one i love
to ask and we'll ask you know for both of you
guys um is there a book that you love to recommend
it could be what we discussed or something completely
different um i would say that the terry walls
protocol i mean that's I don't know for sure.
I mean, I think it's too early to really tell.
But everything she says in there just makes perfect
sense. Just as far as getting back to the basics,
you know, eating clean, eating vegetables, eating,
you know, grass -fed organic meat and staying
away from, you know, processed foods. and sugars
and things that are essentially, you know, manmade.
Um, it just, it just, there's no arguing it,
you know, she just hits these points and that
makes sense. Yeah. It just makes perfect sense.
And, you know, I think before this, it wasn't
that I wasn't, I was, I wasn't eating clean.
I've always had like, you know, um, We ate pretty
good because, you know, we were athletes and
we kind of learned how to eat through, you know,
college and high school and stuff. But the focus
is definitely more on cleaner foods for sure.
Amanda, give me the background of who she is
and how she discovered that. Yeah, so Terry Walls
is a woman who had MS. She still has MS. But
she had progressed a lot. She was wheelchair
-bound. And so she decided to try to change her
MS with her diet. So she started eating. It's
kind of like paleo. It's really focusing on vegetables
and, like Eric said, those grass -fed organic
meats. So she started changing her diet and noticed
a huge improvement in her mobility, everything.
So she's out of her wheelchair now. She's doing
really well. And she recommends this diet for
a lot of people with MS. Now, we don't know how
it affects people with ALS. And like Eric said,
it makes sense. It's so important what you're
putting into your body. So we're giving it a
try. And it's like he talked about, it keeps
the inflammation down. And I don't know, I think
I feel better. I'm not like as bloated. I don't
ever feel like I'm so full. Like sometimes, you
know, after you eat a huge meal, you feel disgusting.
So I haven't had that feeling in a really long
time. So I don't know. And maybe it's just a
little bit mental for us, too. It's just, you
know, knowing that you're putting really good
things into your body to help you. So, yeah,
that's something we've been trying. We've been
doing it for a few weeks now. It's hard, though.
It does take a lot of planning and a lot of work.
But it's kind of like our job to eat healthy
now to help him. Yeah. And again, as far as getting
people angry, I just interviewed the guy that
made the Game Changers movie. And there's some
to and fro between the two sides. But again,
the middle ground is voting with a dollar if
all food was organic again. All animals were
not locked in some factory and keep kept alive
by antibiotics until they could slaughter their
dirty meat because they're so sick. If we had
all the same type of foods and farms that our
great grandparents had, then it would be cheap
and it wouldn't be hard for you. Every store
would have it. But that's the problem at the
moment is people have to look. We're lucky in
Florida because we're surrounded by lush farmland.
So it's a lot easier, I think, than, you know,
obviously California's desert, really. But there's
no reason why if we did it for thousands and
thousands of years, why everyone thinks it's
insanity that we can't go back to that. Well,
you don't even have to say, is that organic?
We talked before recording as well, and I've
talked about this a lot. the fact that they're
wearing hazmat suits spraying our food and then
we have all these people getting these weird
and wonderful diseases i mean that in itself
is no question there has to be a correlation
you know so yeah so i think i mean you know i
don't think it's a placebo i think it just is
common sense you're asking your food to not be
messed with simple as that right it really is
yeah another thing that we're doing it it's um
It's called The Medical Medium. It's by Anthony
William. Eric starts his day with a 16 -ounce
glass of celery juice on an empty stomach. And
in his book, he just talks about how it really
helps your body kind of clear those toxins and
just give your body a fresh start for the day.
And it is really important that it's fresh celery
juice and right on an empty stomach when you
wake up. We bought a juicer and we've been doing
that, or he's been doing it. I tried it, but
I just can't do the celery juice by itself. But
he does it every morning. Yeah, I actually really
like celery juice. So I don't mind it. I actually
look forward to it. Well, I started doing, I
had Stan Efferding on the show, who's a bodybuilder,
powerlifter, they call him the Rhino, but he's
big on nutrition. He's got the vertical diet.
Have you ever seen that? Anyway, but one of the
things he talked about, there's this complete
aversion to salt. And you live in a place where
it's very hot and you sweat a lot. I do as well.
And so his first thing in the morning is a big
glass of water with lemon juice and a little
bit of salt in it. And I started doing that,
and it's kind of the same thing. Initially, it's
not. I mean, it's actually not bad, but it's
a little salty, which is kind of weird. But you
do, it's like if you've been processing all the
toxins and everything in your body, and then
you give a big tall glass of water with that
as the first thing you do, then you're hydrating
and you're putting those minerals back in your
body. So again, sense, it just makes sense. Right.
For sure. All right, so the same question, but
a movie. Eric, first, what's your favorite movie?
Oh, gosh. I like Legends of the Fall. Legends
of the Fall? Yeah. Brad is pretty hot. Yeah,
he gets me every time. No, I really like Montana.
It's just the setting of that movie is incredible.
And it's about brothers and a little bit of a
love story. you know one brother goes to war
and the other three brothers go with them or
the other two brothers go with them and kind
of protect him the whole time you know but yeah
I don't know that movie's just been I watched
it when I was like in 8th grade and I think it's
been my favorite movie ever since Yeah, it was
a good film. Yeah. Was Anthony Hopkins in that
too? Yeah, Anthony Hopkins. Yeah. Grumpy old
bastard. Yeah, yeah. He's a grumpy old colonel.
Yeah, the whole setting is just awesome. It's
beautiful. Yeah, absolutely. So, Amanda, same
question. Oh, gosh. I'm like sitting here freaking
out because I don't even know. There better be
a good one. What? I don't know. What's my favorite
movie? I don't know. This is one of your favorites.
Just one that you would recommend to people.
One that you've seen that you liked. Oh, man.
I feel like we haven't seen a good movie in a
long time. I feel like they just don't make movies
like they used to. I don't know when the last
really good movie came out. I know. I'm honestly
trying to think of a movie that... Oh, gosh,
no. I can't spit my words out then. What about
a documentary? Is there a documentary you remember
seeing that you were struck by? I'm trying to
think. The only documentary I think we've seen
that we probably both watched was Blackfish or
something. The one with the orcas, yeah. Oh,
man, I'm not good at these questions. That's
a great point again. people arguing like from
the sides in the middle ground is do you honestly
think a killer whale is supposed to live in a
swimming pool right it's a simple freaking question
right of course it's not this is a mammal that
you know goes if it's a mammal or fish i'm not
sure but you know it goes thousands of miles
in the in the wild so yeah i honestly don't we
don't watch tv that much you watch a lot of documentaries
yeah i'm trying to think It's like we haven't
watched TV, I feel like, in four months. We've
been so busy. You've been on TV more than you've
watched it. Yeah. I mean, it's been. That's the
only time we watch it. We never really were like,
we never watched a lot of TV to begin with. And
now we really haven't. I mean, you could see
the size of our TV. That used to be a big TV
not too long ago. Now that's like you sit in
the back of the plane seat in that thing. Exactly.
We watch a lot of like Planet Earth before bed.
Oh, yeah. That's a great show. That's like our
go -to. All right. That's lots of good. Yeah.
I know. I wasn't prepared for these questions.
No, no problem. They catch people out. So I'll
give you a different one. Is there a person that
you would love to recommend to come on this podcast
to speak to first responders, military? Medical
community. Human beings. While you're thinking,
I'd love to get Ellen on one day. I think she'd
be awesome. She does so much for the fire service.
Yeah, I was going to say her, actually. Yeah,
get Ellen on here. Ellen would be amazing. She
told us over and over how much she loved firefighters.
Yeah, she's a huge, huge supporter. And I think
like a few days before she had us on, she had...
I'm pretty sure it was the fire station that
saved her house during the fires. It was like
10 firemen? Yeah. Yeah, I remember seeing that
as well. And when we were first talking to the
producers to go on to the show, they just kept
saying, you know, Ellen loves firemen. You know,
she loves firefighters. And, yeah, so. She definitely
made that very clear. She would be very cool
to have on here. She'd never know. I mean, if
she does, this is the way to talk to them. But
I actually saw her show. I used to live in Burbank,
and I went to the live show one time. Oh, nice.
Not as a guest, just as watching. All right,
well, we'll move on. The last thing before we
really go into where people can reach you and
how they can help, what do you do to decompress?
To Usar. Well, so I used to be working out, running,
surfing, mountain biking. I spent a lot of time
fishing. I spent a lot of time in the outdoors.
But all those things I named have become a lot
more difficult for me. And they also say if you
work out too hard or too much, it could increase
the progression. So I've had to kind of step
back and take it easy. And that could even be
the inflammation side again, huh? Exactly. Yeah.
So the sauna, we got a sauna donated to us. So
that's been huge. Just being able to go in there
and break a sweat. I used to. It has been great,
but I still like going outside, take our dog
to the beach and walk on the beach and looking
at the surf and stuff. My brother and I will
paddle out, but I can't really stand up anymore.
And that's got to be a little daunting being
in the water, not having the... ability that
you had before for sure that's been that's been
one of the most difficult things is that you
know i was so active um before and um not being
able to do that is is is hard mentally too and
i'm also you know i'm kind of nervous to to try
things because i don't want to fail you know
and then it's a reminder that I have this and
you know this is kind of the way I'm declining
you know so I see yeah so I just try to take
it easy um I like when we have time you know
reading or um going to the sauna walking walking
the dog that's kind of what um what I've been
doing recently. Have you tried yoga? Yeah, yoga.
We do yoga every once in a while. Probably not
as much as we should. I mean, I really like yoga,
especially like core power where you're in that
flow kind of yoga. But we just don't do it enough.
I think we should do it more for sure. Because
again, the meditation element to it as well,
the positive affirmations and all that. Yeah,
I'm a huge believer in yoga for sure. I used
to do it when I played football. I mean, it just
helps having clarity, flexibility, injury prevention.
And you break a sweat, you feel good, and it's
just everything about it is positive. Yeah, absolutely.
Amanda, same for you, decompress. Oh, man. I
like to read a lot. So I'll do a lot of reading.
Taking our dog for long walks. There's like a
back bay by our house. So I like to take him
on long walks through there and usually listen
to music or podcast or kind of just let my mind
escape from all this or try to. I've only been
in the sauna once. I don't know. It's hard for
me to sit there for that long. So I don't do
that that much. At least you don't have to put
up with 50 -year -old obese men taking the towel
off their junk and just sitting there like some
of the gyms I've been to. Seriously. She still
teaches soccer, so she does soccer lessons, I
feel like. and and you work out you know she
does orange orange theory you ever heard of that
yes yeah so we go in different zones yeah so
we were actually doing that quite a bit um together
um before this all happened but so yeah but it's
still i haven't done it in a while because it
just like mentally i can't get into it i don't
know it's too hard for me right now but um Yeah,
I would just say a lot of reading and, I don't
know, this keeps us pretty busy. I don't know,
I guess I've been doing a lot of cooking, trying
to try different meals for us to eat. So that's
been fun. Yeah, we go to the beach a lot. We
like to take our dog to the dog beach down in
Newport and just kind of run around with him
there. And honestly, he helps a lot to our dog
with just like, I don't know, he's decompressed
with him. He's just like so happy to be around.
So the dog we're talking about, is that the one
right by the bridge? Yeah, that's right where
my friend I was visiting. Their house is like
half a block back right by there. So you've probably
even seen their dog. probably yeah we go there
a lot our dog loves it he loves the water and
he'll like go in the water and then run out and
roll in the sand and it's like the whole day
yeah it's like a whole day process because he's
so dirty after but he loves it and yeah we we
love going to the beach so very healing place
yeah all right so then let's talk about first
so so um what can people do to try and put pressure
on speeding this process up have you found any
avenues people the right to organizations to
support anything like that so what we've been
doing um we we we just got back from dc so we
talked to over a dozen congressmen senators um
spoke to a few people in the hss um fda and um
basically told them our story and and told them
what's going on and and this is this is what's
happening you know and i don't know if you guys
are aware of it but you know this is this is
happening to me and it's also happening to over
30 000 american um and every everyone we talked
to Their jaws dropped and they couldn't believe
it. So we got a lot of people on board and we're
going to continue to do that. And I think the
more people that we raise this awareness to and
the more people that talk to their local congressman
or senator or... write letters to the fda or
to to um you know people that could really make
a change is is going to help uh significantly
um yeah i think um one thing we learned in washington
dc when we went is they just formed I think on
the House side, so the congressmen and ALS caucus
were. Oh, really? Yeah. And so that's kind of
been our big push. Any congressmen that we talk
to, we just ask them, will you please join the
ALS caucus and kind of help us in this fight?
And so I think if people wanted to help, it would
be to reach out to their local congressmen or
senators. I'm pretty sure they started one on
the Senate side also. Annoying. Sorry, Chuck.
Selfish firefighters with the sirens. But, yeah,
we're just asking them to join the ALS caucus
and kind of be behind us in this fight or lead
the fight. I mean, they have more power than
we do, obviously. And I think it's working, you
know. Just the other day, Senator Braun asked
the commissioner. of the FDA, the new commissioner,
about ALS and how he plans to attack this, you
know, terminal diagnosis with no treatment options
and limited availability to ALS patients. So,
and that was huge. That was the first time anyone's
ever done that. So it's working, you know, what
we're doing and what other ALS advocates are
doing in D .C. is helping out. And the more and
more people that get on board and help with this
cause, the greater effect we're going to have.
And so I think people always ask, you know, what
is it that we can do to help? Well, just spread
the word, spread this story. And share to as
many people as you can. And join us, you know.
Join us in this fight. It's really a fight for
hope, you know. And the more people we have with
us, the bigger impact we're going to have. And
they can literally share their story. There's
going to be a link. You just put it on your Facebook
page or email chain or whatever. And I think
that's what I love about the podcast thing is
you can't listen to you guys talk and then walk
away and be like, we're invested now. And for
everyone listening, I make sure this is a completely
free resource for everyone. So in return for
this one, I hope that people will just take a
moment and do that, share. And if they do know
any people in the political world, reach out
to them, but also just get everyone around you.
fired up and educated exactly and and people
are it it's um it's been amazing the support
and the feedback that we're getting back and
people are so willing to help out and and people
are fired up because it's there's there's something
wrong with what's going on and you know i'm no
politician but i do know right from wrong and
this is this is freaking wrong And something's
got to change. Yeah, absolutely. All right, so
on the other side, the GoFundMe, where can people
find that? Yeah, they can find the GoFundMe on
our website. It's stevensnation .com. And there's
a link on there that says, you know, donate now.
So that's where they can find the GoFundMe. I'm
amazed you're able to get that website. Having
got one myself and knowing how they're all bought
by GoDaddy and all these other... turds yeah
that's good i'm glad you got that yeah we've
had a lot of help with everything man yeah we
could not have done this without the people who
helped us with the website and and everything
so yeah it's brilliant but then again you know
that's the other side of the coin i think so
many people want to help i think people i truly
believe people inherently good there's some pieces
of shit out there we all know them but um And
they just need to know how. They need to be led,
you know. So everyone listening, you know, if
you're looking to do something good in the world
today, then go to the website and donate and
share the word, you know, and axe ALS, as they
say. Yeah. Awesome. Right. Well, I want to thank
you so much. It's been an hour and a half conversation.
I'm honored that you allowed me, this complete
stranger, weirdo Englishman, in your home. But
I truly hope that this makes a difference. Thank
you. Yeah, thanks. Thanks for coming. And we
really appreciate you helping us to spread the
word because that's ultimately what's going to
lead to change. So we really appreciate you.
Yeah, thank you for having us.