December 11, 2024 • 54 mins
Imagine facing a life-changing ALS diagnosis and tackling it with resilience and positivity. That’s what Johnny Rodriguez, a 35-year-old high school lacrosse coach, husband, and father, has done. Johnny’s story is one of inspiration, determination, and the power of community. From playing lacrosse in Hawaii to mentoring athletes at Mater Dei High School in Santa Ana, California, he pushes the boundaries of what’s possible with ALS.
Johnny’s support network and the lacrosse community have been vital in fueling his fight. As a coach, he not only develops athletes but also teaches life skills and resilience. With a holistic approach to managing ALS—including ice baths, meditation, and advocacy through Athletes vs ALS—Johnny exemplifies hope, unity, and perseverance. His journey reminds us of the strength in community and the relentless pursuit of life’s possibilities. Listen in and share with a friend. Hugs, Lorri
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Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Lorri Carey (00:00):
Uh, even after a hundred episodes, I don't think
I'll ever get tired of thatsweet intro from my guys.
So, thank you, paul andChristian.
Alright, hello, I'm Lori, yourhost of.
(00:22):
I'm Dying to Tell you Thank youfor being here.
If you've been here for a while,you know I created this podcast
when I was in my 15th year ofliving with ALS.
I wanted to share people thatinspired me and really kept me
(00:44):
energized to continue this ALSfight.
Now, at my 20-year mark, Icontinue to meet new people that
really encourage me me and I amso excited to share my new
(01:07):
friend with all of you, someonewho is living with ALS and has
been able to take his experienceover his young 35 years of life
and really put it to test byfinding ALS every single day in
(01:32):
his own way.
Today I am talking to 35 yearold Johnny Rodriguez.
He is a husband and daddy totwo very young sons.
Johnny is also a high schoollacrosse coach in California at
(01:56):
Monarch Day High School.
He's been out there shining hislight to not only raise money
for ALS research, but also inhopes of inspiring me, inspiring
anyone else living with ALS or,I would also say, anyone going
(02:23):
through a really difficult time.
Johnny is able to talk about thepower of his mind and how he
has been living faith over fear.
Even being in his mid-30s, witha very young family, he could
(02:43):
have easily stayed in a verydark place, but has chosen
instead to win every day againstALS, to think of ALS as a
competitor and fight literallyfight it every day, and from
(03:05):
what I've read, what I've seenso far, johnny is winning
against ALS.
So I'm going to jump on Zoomand catch him from California
and hear what he's doing and howhe's doing it.
What he's doing and how he'sdoing it.
(03:25):
So let's go on over to my chatwith Johnny Rodriguez.
Johnny Rodriguez (03:31):
No-transcript good, um, a little beat up.
(09:41):
Uh got back from hawaiiyesterday, last night, so, uh,
just uh, and I was, I wasplaying lacrosse, so my body's,
uh, my body's playing.
Lorri Carey (09:54):
Nice, that's awesome, that's great.
So how are you finding thatyou're doing when you're playing
, like you know, versus a normalgame?
Johnny Rodriguez (10:06):
um, I, I wore it.
So I played six games and, um,it'd probably be good to talk
about this, just because I thinkit'll give some people some
hope.
Yeah, for sure.
But just, you know, I'll giveyou a little bit uh, more of an
answer later.
But yeah, um, I wore down as,as I was probably started off,
about 95% of where I used to beSome restrictions was just
(10:29):
straight to my right hand and myright arm and, um, towards the
end of it I could barely throwthe ball.
So, um, it got to the pointwhere you know my, my body, it's
, we're not, we're not, we'renot regrowing muscle and the
body.
When you know we, we push it.
It doesn't do a good job ofbouncing back so uh, yeah, I
felt that, uh, I felt it a lotthe last day yeah, yeah, that
(10:53):
heaviness, the heaviness.
Lorri Carey (10:56):
Yeah, yeah, I went to top golf yesterday with my
son and his friends and I'm likeI went to eat and then I'm like
let me try, let me try to swinga club, and that.
So I get up there, I pull himback and I'm like, damn, this is
heavy are you giving?
(11:17):
Me the heaviest club, or what?
I'm like no, it shouldn't be.
And then I'm like I hit themall but I barely brought it back
and then I said, use this one,use this driver, it's really
light.
And I tried it and once I gotit like past here, I was able to
(11:39):
throw it back.
But I was like they said youwant to do it again?
I'm like, no, that's good.
I mean I felt like you knowthat was such an accomplishment.
Johnny Rodriguez (11:49):
So yeah, that's awesome.
Lorri Carey (11:51):
Good for you everything, it becomes relative
right absolutely yeah noquestion well, I'm really,
really happy that that we'rechatting.
You know, I've been in thiscircle of for 20 years, over 20
years and it really touches myheart, number one, when I see
(12:15):
someone that is so young andthat is diagnosed with ALS.
And then you really caught myattention when, you know, I
watched a few things and justwitness your spirit and the way
that you are approaching thisnew season of life.
(12:39):
So, you know, thank you forbeing so transparent and for
giving other people an option,you know, to look at things and
to approach life with somethingthat is so devastating.
I think it's really reallyimportant and very powerful,
absolutely yeah.
Yeah, let's just jump back alittle bit.
Johnny Rodriguez (13:11):
Yeah, let's just jump back a little bit.
Before ALS came into your life,what was your routine?
What was your life like?
Life was, you know, I was, youknow, from college I played
lacrosse, I played hockey.
So I've always just had a loton my plate and that's kind of
the theme of it.
That's why I brought that upand I'll start there.
But even in, but even in highschool, I was like I wanted to
play hockey, I wanted to playlacrosse in college and really
didn't get the opportunities todo so.
I was really good in the areaof the country I lived in, which
(13:33):
was Maryland, but it just sohappened.
The sport I played for fun wasthe sport I was best at
nationally.
So I was, you know.
I got some offers to play incollege.
I chose a school that I lovedand I got to compete for a
national championship prettymuch every year.
I was, I was, I was there.
So that led me to professionallacrosse, which you know.
(13:56):
I had a, I had a job I couldhave taken and blah, blah, blah,
but I decided to say no, youknow what I'm going to.
I'm going to make 500 bucks agame and play professional
lacrosse, because I've alwaysdreamed of being a pro athlete
of some kind.
So I did that.
That led me into the lacrosseworld.
That wasn't enough to make aliving, especially living out in
California, so I had to pair it.
(14:16):
I paired it up with coaching.
I was around the game so I knowa lot of the kids were familiar
with me.
A lot of the kids were familiarwith me.
And so I kind of used thatplatform to kind of get into
coaching and kind of help giveback to the game that's given me
so much.
And so, you know, I'm probablyabout 22, 23 years old when I
(14:40):
moved out to California and I'vebeen out here ever since I'm 35
now and I started a fewlacrosse businesses and I'm
still working in those samelacrosse businesses, uh, 13
years later.
So, um, they've treated me welland I get to be around kids and
I get to help, you know, build,build their character up.
So that's where life was, and Iwas running 100 miles an hour.
(15:00):
I had married my wife in 2020.
I had kids.
Shortly after that, I had myfirst kid and before ALS, it was
like I just I was chasing thenext dollar, the next
accomplishment, the nextaccolade, the next tournament
championship, whatever it was Iwas chasing and I wasn't really
paying attention to all theblessings that God is putting
(15:23):
into my life.
Yeah, so I got in the face onOctober 20th 2023, a little over
a year ago with the diagnosisof something that I knew I had
for about a year up until thatpoint.
So, or one of your symptoms, Ifinally got the word that you
have ALS.
So that was a punch in themouth and it kind of opened my
eyes and made me realize, like,what I've been missing, and
(15:45):
that's a beautiful family thatI've had in front of me and, uh,
friends that I consider family,um, out here in California.
And so you know, I can honestlysay up until this point, I mean
since being diagnosed, I haveenjoyed life more than I ever
have.
Yeah, yeah, I get, I know theaudience can't see Nice.
(16:07):
This is Jeff.
Lorri Carey (16:11):
Hello, he's going to take a nap.
Okay, how old is he?
High five, that's almost twoyears old.
Wow, then you have another son.
Johnny Rodriguez (16:25):
Cruz is five months old.
Lorri Carey (16:27):
Oh, Cruz is a little one Okay.
Johnny Rodriguez (16:33):
They are very similar to their names.
So Cruz likes to chill, he'sthe chill master, and Jet is a
menace and goes 100 miles anhour everywhere he goes.
Lorri Carey (16:41):
Oh my gosh.
Now I love the names Jet andand cruise.
Are they named after an athleteor?
Johnny Rodriguez (16:49):
they're not named after an athlete.
That's why we named them.
Okay, coach so much and we'vecoached so many kids that I
never had a jet and I never hada cruise, and neither did she,
and so we tried to findsomething unique that was uh,
that was fun, that they wouldlike, that they would enjoy, you
know, from childhood all theway through adulthood.
(17:09):
So Jet, joseph, jj, and then wehave Cruz, christopher, cece.
We didn't really have a lot ofarguments over the names.
We kind of both agreed to them.
Lorri Carey (17:20):
So I love it.
I love it, oh my gosh.
So you talked about your wife,Christina, and she's a coach as
well.
Johnny Rodriguez (17:31):
So, yeah, so, christina, she is.
She's the rock in my life,she's, she's the real MVP.
Yes, she's also a coach, muchmore decorated of a coach than I
.
Three national championships,three coach of the years to my
zero.
Yes, she's also a coach, muchmore decorated of a coach than I
.
Oh nice, Three nationalchampionships, three coach of
the years to my zero.
She also recently stepped downfrom being a head coach after
(17:54):
finding out I was diagnosed Justbecause we wanted to spend more
time with the family.
And when you're a coach, whenyou're a really good head coach,
you're spending more time withyour kids than you are your
family, and we understood that.
Lorri Carey (18:08):
I got it.
Yeah, my husband was a highschool hockey coach Got it and
he coached kids from mini-miteson up all the way through high
school.
Johnny Rodriguez (18:25):
I know the commitment in the time for sure
A hobby is a big commitment initself, and to be a coach, you
got all that commitment and more.
Lorri Carey (18:36):
Yeah, so you're going about your life, living
life, a young family.
And then what was the firstthing that you thought of when
you were given your diagnosis?
Johnny Rodriguez (18:54):
Like, what was the first thing that came into
your mind?
Well, I was trying to find outwhere my pinched nerve was.
I figured, you know, my muscleswere.
I was just not getting bloodflow or something was going on.
So when he told me I had ALS,um, I, I didn't believe him.
But I, you know, I gave him thebenefit of the doubt and I
quickly pulled out my phonebecause I said that is, that's a
deadly disease.
(19:15):
I mean, that kills peoplepretty quickly.
I knew that much of it and IGoogled it and the first thing
that came up and said it's a twoto three years or two to four
years like that, right on top ofgoogle.
And man, that's when I just got.
I was dizzy, I got confused,scared and like walking out of
(19:40):
that.
I we, I was in the doctor'soffice for the 15 minutes after
that.
I don't remember a single word.
The doctor said after he toldme I had ALS.
It was emotional, as you canimagine, and I was by myself
because, like I said, I didn'tthink anything of it.
So I had to go home and I hadto tell my wife.
I had to tell my wife that Ihad ALS and that was for me that
(20:03):
was.
That was tough, because thenight before we were literally
talking about cruises, whatcruises name was going to be.
We're sitting at the table andjet's sitting there with us and
he's throwing spaghetti andmeatballs at us and thinking
anything of it, because we're soused to it and I remember
thinking like man, this is likeI love this new life that we
have, like it's so muchdifferent.
(20:24):
It's a completely new chapterand I can't wait.
I can't wait for more of this.
And literally the next day I'min the doctor's office finding
out that you know there's nogood news you have ALS.
So it was that was tough, andhaving to tell her it was very
difficult.
In the next couple of weeksthat endured were miserable.
I wasn't just a rock right fromthe get-go.
(20:46):
I was trying to pretend like arock for everybody around me,
but inside I was falling apart.
I went to a church.
I was a faith-driven persongrowing up, but then I grew up
in a Catholic family but asadulthood happened and occurred,
(21:08):
I was busy on the weekend.
That was coaching, and Istarted losing connection with
God and my faith.
And so, you know, I finallystumbled into that church and,
um, after a few weeks of of helland misery and I came out with
a huge weight off my shoulders.
Uh, understood that.
(21:29):
You know.
I just I need to trust him.
Proverbs 3, 5, and 6 is one ofmy favorites.
It's trust the Lord with allyour heart, don't rely on your
own understanding.
In all your ways, acknowledgehim and he will direct your
steps.
You know, it's amazing that allI needed to do was go back into
that church and cry for a fewhours and come out of there with
(21:50):
strength and a new focus and anew understanding that wasn't my
own, that I didn't need tounderstand, and I just needed to
trust that.
You know, if I have this, it'sfor a reason, and my job is to
find out what the reason is.
And you know, he's prepared methroughout my life, through
everything I've done, to compete, to be a competitor, and one
(22:15):
thing sure as hell is I'm goingto be competing with this
disease for a long time.
So, yeah, yeah, ever since then, I've you know, I when,
whenever things go bad and I'mstruggling or you know a new,
there's a new weakness that Idiscover physically within my
body, I just remind myself tofocus on him and not focus on
whatever that weakness is.
Lorri Carey (22:29):
And, yeah, it really keeps me strong there are
only certain things that youcan control, and I think when
you realize that you're not thedriver in this life, then it's
what do I do with it?
You know?
Johnny Rodriguez (22:48):
absolutely so that's one of the things like
when, as an athlete, and all theathletes out there get it is,
you know, when you go into amatch or a game or a competition
, whatever that is in your sport, if you do your best, you're
going to be proud of that effort, right?
Yeah, the victory or defeat isout of our control, but what is
(23:08):
out of control is to give it ourall, be prepared and and
compete with it.
So, um, that's all I can do,and I'm I am at peace with that.
Lorri Carey (23:16):
Absolutely.
That's awesome.
So one of the things that hasbeen really reinforced from so
many people that I've talked toon the podcast is the value of
community, and I know you talkabout leaving the east coast,
(23:37):
going to the west coast, and Imean your lacrosse family, your
school family and your friendsthere.
Tell me what that community hasdone for you in the past year,
like what difference have theymade?
Johnny Rodriguez (23:57):
my lacrosse community specifically yeah well
, I, I was not a I've never beena handout guy, um, and this is
just from the get-go and I'llget through it from each like
the sport as a whole.
But, um, a couple of peopleapproached me.
You know, with all thistreatment, you should probably
have a go fund me, and you knowI've I've never been one to be
(24:18):
comfortable with that.
So the lacrosse community one ofthe big companies that I used
to have a sponsorship from butalso was close friends with, was
, was a company called the eastcoast eyes, out of baltimore,
and, um, they reached out to meand I said you know what?
I'm not really interested in agofundme.
But you know, they said,whatever ways we can support, we
(24:39):
want to let you know.
They ended up communicatingwith my mother, reaching out to
my mother and saying, hey, wewant to do this for johnny is,
are you okay with it?
And so I had the GoFundMe setup and it was, uh, reposted by a
bunch of people with the newsthat you know, I was diagnosed
with ALS and that we needed somemoney for some treatment and
some therapies that were to bein my near future.
(25:01):
And it was incredible.
I mean, it was repost, it wasshared by so many different
people and I think I had over athousand donations within the
first couple of weeks.
Lorri Carey (25:14):
That's incredible.
Johnny Rodriguez (25:15):
It was special and it kind of makes you feel,
you know, because as a coachyou're just, it's not about you,
it's about everybody else andyou know you kind of lose sight
of you know, ever having peopledoing something for you, you're
always doing something for otherpeople.
So when the lacrosse communitycame together, it wasn't just
you know one company, it wasn'tjust one area of the country, it
(25:40):
was, it was all over thecountry.
It was people I compete with,people that you know, ex players
that I've competed with.
It was ex coaches that I'vecoached against um, players that
have played for me, uh, playersthat have played with me.
So it was just.
It was great to see that youknow, there's still even though
I haven't talked to or spoken toso many people in so long, that
people are really stillconcerned and I still have a
place in their heart and thatreally that motivated and
(26:03):
inspired me.
So all the prayers thatcontinue to come in and all the
messages really helped lift meup in a time that was very dark.
Lorri Carey (26:12):
I don't think that you realize the impact you know,
as a coach, that you're havingon your players.
I mean, like I was talkingabout my husband being a hockey
coach, I think he's had three,two or three hockey players come
back and ask him to officiatetheir winning.
Johnny Rodriguez (26:31):
Wow.
Lorri Carey (26:33):
And then he had the goalie of our high school rival
do the same, you know, and soI'm like that really tells you.
You know, in the midst ofthrowing the clipboard and this
and that and getting thrown outof the game, like it shows you
(26:56):
what those kids are taking awayand just like you're saying,
with all the love and thesupport and the action that they
have taken to support you,really says how you are touching
their heart and their lives,you know absolutely, yeah, the
the other side of this communityis my, my close community of,
(27:17):
uh, my, the modern day lacrossecommunity, which is the school
that I've been at coaching atfor the last decade.
Johnny Rodriguez (27:25):
Uh, certainly a powerhouse in in academics and
athletics and one of the bestschools in the country.
In my opinion and you know, ina competitive world it's very
cutthroat and there's usuallynot a lot of feel to it, and
there's certainly a lot of feelto this community, a lot of
honor, glory and love comingfrom modern day lacrosse.
When I got diagnosed, I steppeddown from being a head coach
(27:48):
just prior to the diagnosis.
Actually, I knew something waswrong with me, but I was so busy
at the time I just never hadtime to really understand why I
was experiencing the symptoms Iwas experiencing.
Lorri Carey (28:01):
I mean if.
Johnny Rodriguez (28:01):
I would have even had time to look it up.
I probably would have found outthat I had ALS a year prior to
being diagnosed.
So it was just I was needed andthe school completely
understood.
I remember I first group tofind out outside my family and
my friends was my players.
I, like before, like outside ofmy really close friends and my
(28:22):
family, my players knew beforeanybody else.
I brought them into a chapeland I explained what ALS was.
I explained that I had it and Ididn't know what my future
looked like, I didn't know whichdirection I was going in, but
that I was very grateful to be apart of this group and when I
was with them it didn't feellike I had any diagnosis, it
(28:43):
felt like I was living a normallife and that I wanted to
continue or to that and still tothis day.
That's what they give me.
I mean, every time I that field, I feel like you know there's
all this weight is weights offmy shoulders, but you still go
through life.
Like you know, I'm still tryingto type on a keyboard and it
takes me twice, three times aslong to type as it used to
(29:04):
because you know my fingers arehitting the buttons the wrong
way, and so it's constantly inyour mind.
But when you're out there onthe field, you know it's just
you're.
Lorri Carey (29:11):
Just you're where you're supposed to be at that
very moment and it feels great.
Johnny Rodriguez (29:16):
You know I love, like I said at the
beginning, this game has givenme so much throughout my last 20
, 25 years playing it so manygreat people in my life, so many
things I've learned from it,and people in my life so many
things I've learned from it andit's just been a tool to create
a stronger character within meand make me a better man I am.
Lorri Carey (29:37):
So I want to, you know, leave that and inspire
those kids to want more out oftheir lives and to feel like,
when they graduate, they can dosomething to change the world
for the better yeah, I, I lovethat, and you made me think of
several people I've talked tohave told me that all they
really want in their communityis to do the things that they've
(30:03):
always done with that personbefore ALS, like come over,
drink a beer, watch a game.
You know whatever it is, butwhatever you used to do is what
you crave.
You know, and I feel likethat's exactly what you're
(30:24):
getting when you're on the fieldwith your team.
You're getting to be coached,you're getting to be athlete and
you're able to be their leader,just like you always have.
Johnny Rodriguez (30:39):
That's right.
Yeah, and it's a specialfeeling, yeah, even though we're
usually out there right nowit's the off season, so we're
out there at like 6 AM, but evenit's fun to get up.
It's just to get out there withthe boys and to see them wake
up and to get into them and tounderstand, like you know, this
is, this is uh, whateverchallenges, and we want to
(31:00):
constantly challenge them sothey continue to find some
growth and whether it's a game,it's on the field or off the
field.
Lorri Carey (31:06):
So, yeah, it's always been a joy in my life
yeah, I heard you say life is somuch bigger than lacrosse
relative to what you want toteach your players, so I was
just curious if you have seenanything come out of that
(31:30):
already and maybe you've had aconversation with a player that
is showing you that they'regetting it like they're growing
as a young man by watching youhandle adversity in the way that
you are.
Johnny Rodriguez (31:49):
Yeah, I'm aware that you know, every time
I I step on the field and I'm infront of those boys, they
understand what I'm goingthrough, or they, you know, they
, they, they know what I'mdealing with.
Um, so it's very important tome to understand, you know,
there's I really have to go outthere and and be that guy that
that I was born to be.
You know, the guy full energy,the guy with a big smile on his
(32:10):
face that's ready to get afterit, ready to be focused and
ready to have a good time.
And I think it's not like it'sa face I put on, it's just
something that I understand.
You know, if I can't walk outthere at 6am looking like I'm
tired being in the position I'min, so you know it's it's an
(32:31):
honor to do so and, like I said,life is so much bigger than the
game of lacrosse and, as acoach, I wouldn't be doing this
for as long as I've been doingit if I thought lacrosse was
what all what it's all about.
So it's just the tool that weuse to, um, refine these guys
and refine their character and,um, cultivate them into being
the best people they can be atthe high school level.
That's why I never really wasinterested in a college coaching
(32:52):
job was because high schoolyou're still so formable that
the foundation is still beingbuilt in high school, whereas in
college it's kind of alreadybuilt.
You're kind of just tailoringit to a point.
But I really like watching youknow the development from the
incoming freshman to thegraduated senior.
Lorri Carey (33:12):
And with you and Christina both being coaches,
and it sounds like she's thehead coach, not like she's the
head coach in the house.
Johnny Rodriguez (33:22):
I'm the one that spends all the time
coaching.
She's the one that wins all theawards.
Lorri Carey (33:27):
Oh, there you go.
But from your past history doyou think that's helped you guys
take this new time in life andfigure out a game plan how to
handle it, how to approach eachday.
You know, like structure anddiscipline.
Johnny Rodriguez (33:47):
Yeah, you know , I think coaching is, uh,
definitely something that hashelped us.
I mean, it's it's why I'm doingso well.
I think is because of how wellI'm taking care of my body right
now.
Um, and I think that came froma strategic approach, a game
plan to compete.
You know, just like we do, andwhen we prepare for, for games
(34:08):
whether it's boys across orgirls across, I mean, there's
still we.
We watch film, we create ascouting report, we understand
what the opponent's weaknessesare, what, what are some, what
our strengths are, what theirstrengths are.
And same thing with disease howthis disease can hurt you, how
you know what you do with youractivity, how you can leverage
the disease and we don't want toleverage the disease and watch
(34:29):
ourselves progress Right.
So it's understanding bothsides and coming up with
something that you want topresent this disease and say
this is what, this is how I'mgoing to attack you and this is
what we're going to do.
And so I think, yeah, I think Ithink coaching played a big
part of it.
I think everything I've donehas played a big part of it,
even, you know, as a playercompeting.
You know there's not a day thatgoes by that I don't that I
(34:52):
just want to sit back, cause ifI'm sitting back and I'm not
doing anything to get better,this disease isn't taking any
days off, you know.
So that's why I don't.
I don't take days off either.
No matter what, I am doingsomething for three to four
hours a day to compete with thisthing, to put my body in the
best position to heal.
Lorri Carey (35:11):
Tell me about what you're doing right now as far as
your regimen.
Johnny Rodriguez (35:16):
Yep, yep.
So the regimen it is I'llpreface it Everybody's different
, and do I know whatspecifically is working for me?
No, and it's tough because I doso much, and so usually the day
it starts or ends with an icebath and a sauna.
The ice bath really helps withinflammation I have a really
(35:39):
stiff neck, so you know, myrotation of my neck is about as
half as much as it would beafter I get out of the ice bath
and the sauna helps withinflammation too, and
exotoxicity helps remove toxinsfrom the body.
I also use a device called theTenet Biomodulator which I wear
(36:00):
pretty much throughout the day.
I wear electrode patchesthroughout the day to stimulate
charge within the body, withinthe cells at a cellular level,
so that my body can function ata higher rate.
I can feel like I have moreenergy, and at night it's
followed by an hour-long regimenthat I do.
(36:23):
That includes foot plates andhand electrodes and basically to
help my body, the energy movethrough my body at a higher rate
and a better revolution.
So it's like our bodies are likebatteries.
If we are drained, there's aproblem with our charge.
We need to charge, and we don'tjust always get that charge
(36:43):
through sleeping like I.
I did a cellular test and I hada very, very scary low charge
within myself.
So it was at like I don't knowwhat it was called the me test,
and I was at like a percentagelevel, like a 7% or 8% of charge
, where I was supposed to be ata 25% to 30% level of charge,
and so once I started using thatdevice, I felt like I had a lot
(37:06):
more energy throughout the day.
I use a Beamer mat, I sleep ona beamer mat and wake up to it.
It comes with a few otherattachments that I use for my
neck and my lower back whenthings get sore, and that's a
pulse electromagnetic frequencydevice.
It's a medical device that Iwould recommend because it's so
easy.
I would recommend that to a lotof people.
(37:28):
Because it's so easy.
I would recommend that to a lotof people and that helps with
blood circulation.
I do a lot of body work.
I stretch a lot.
I do assisted stretching onceor twice a week for an hour so
that somebody's stretching me.
Shout out stretch labs, andthat's been very helpful and I
always find like I'll get likeone or two guys that I can work
(37:50):
with repeatedly because they'velearned my body.
It's the same thing withmassages.
I get massages twice to do.
Didn't even know now like I canfeel like okay, after like two
or three sessions this guy'sstarting to pick up on like what
muscles are always tight andwhat problems I usually.
So I like sticking with one guyas opposed to, you know, just
going to a random massage placeand getting who's ever available
(38:12):
.
Lorri Carey (38:12):
Yeah, yeah.
Johnny Rodriguez (38:14):
The body works crucial that keeps me feeling
good Cause, after about a weekof no massage, I'm really like
my shoulders start to turn inand um, I'm just like a, like a
walking bandaid at that point.
Um, I do meditation now and themeditation has helped with my
vesiculations.
I feel like I'm in a highstress environment or things are
(38:35):
.
I'm running too fast, I feellike things are.
You know, my muscles start topop a little bit more, and so
the meditation has helped a lot.
That's about 20 minutes everyother day, sometimes every day.
You know, in addition to thebody work, I do cupping and
scraping and things like that,but I also do qigong, which is
(38:58):
the qi, which is the energywithin the body, and I have a
guy.
He's.
It's kind of like if, if I wereto have a therapist, that'd be
my therapist.
He's the guy that comes in ifI'm feeling, if I'm feeling a
one percent sorry for myselfthat day, he's, he's going to
kick me out of there and saycome back when you're ready to
talk to me.
Um, he's, um, he's.
Not only that, he'll work on meand he'll work with my chi and
(39:21):
my energy levels.
And I always come out of therefeeling strong, like if I'm
feeling weak, going in mentallyweak even a little bit, I come
out of there feeling like I'mfeeling weak, going in mentally
weak even a little bit.
I come out of there feelinglike I'm going to beat this
thing every single time.
Yeah, so that's, that's reallycool.
And I would have laughed atthat a year or two ago.
I was never into that, likebelieving that stuff but that
would work, but it really has.
(39:42):
I mean, it has really workedfor me.
So yeah.
One of the two biggest things Ithink I really enjoy that I
would be scared without would bea CVAC, which is it's a
hypo-barric chamber.
It goes up and down.
I know you were talking toAaron Lazar a little while ago.
I asked him to come down andjoin me on one of those in
(40:02):
Newport Beach.
Lorri Carey (40:03):
Oh nice.
Johnny Rodriguez (40:04):
But I'm in those twice a week.
It's a pressurized chamber.
It takes you up to like 30,000feet what that pressure would
feel like and then it'll justslam you right down to zero and
it'll take you back up and downand up and down.
So if you think of a emptywater bottle, plastic water
bottle, that thing's going toexpand and contract as it goes
up and down respectively.
(40:25):
So that's what it's providing acellular workout, and it's
incredible.
It's great for the mitochondriato really support those cells.
And then the last thing I'llshare is Skinar S-C-E-N-A-R.
Daniel Palmer is my girl atAscent.
She's the specialist that workswith that device on me and it's
(40:50):
a nerve regeneration type ofdevice.
So and I know this one works,because I really struggled to
drink from a water bottle and toeven hold up a fork with my
right hand.
And when I before I startedthat and after about I'd say,
six weeks to eight weeks, Istarted getting my muscle back.
I started seeing muscle regrow,started being able to drink out
(41:13):
of a water bottle and Icouldn't even pick up my kid out
of the crib.
Then all of a sudden I can pickup a kid a year later that's
almost two now and I can put himover my head onto my shoulders.
So I saw, and so what that'sdoing is she's going into my
neck, where my arm muscles werepretty much toast my forearm, my
(41:36):
extensors, my brachioradialisthey were pretty much
non-existent, um, there was nomuscle tone in them.
And she would go into my neckand she'd hit certain nerves
that would signal, that wouldblast signal into those muscles
that would actually make themcontract, you know, for my neck.
And then after the six weeks orso, eight weeks, whatever that
was, I started slowly feelinglike oh, I can start, my
(41:57):
handwriting is getting better, Ican start, you know, I can
drink out of a water bottle, Ican eat with a fork.
So much better now.
That's been really good and I'dsay that's one of my favorite
therapies.
And I know it's tough for theaudience because not everybody
has access to that.
We've been, I've been talkingto her and the people at Ascent
(42:19):
and Advotation in Newport Beach.
They're incredible people.
It's led by Heather Henneker.
They have just opened theirhearts to this ALS community and
they want to do more with itbecause they're seeing so many
more ALS patients find out aboutthese things.
They're literally moving into anew facility in a couple days
(42:44):
just so that they can keep allthese things coming.
Lorri Carey (42:48):
Somewhere.
Yeah, that's great and, likeyou said, I would say that you
never know exactly what's doingwhat, but hey, if it's working
for you were.
After you've been entertainingall these different forms of
(43:19):
treatment.
Johnny Rodriguez (43:21):
Are you noticing muscle loss, you know,
at a slower rate or yeah, if Icould give you know, some advice
to people out there dealingwith the same thing.
I think mentally, when I wasnot doing great the first couple
I'd say month and a half ofhaving this disease.
(43:41):
I mean, if I had to give someadvice to the other ALS patients
out there and I would love todo that because I have had a lot
of success and I'm so gratefulfor it.
I thank God for it every dayand that's.
I want to share it with people.
I just want to always prefaceit with it's working for me and
I can't promise it's working foreverybody else.
But some of the things that Iwould really recommend is mental
(44:03):
fortitude is number one.
We have to find some peacewithin this disease.
You have to find the benefitsof it.
I mean, it's so wild to be likeyou have a terminal illness and
the benefits of it.
Like we have to realize that.
You know, like I mentionedearlier, when I got punched in
the mouth with this disease, Irealized how beautiful of a life
(44:25):
I had in front of me for thefirst time ever.
We have to see those things andwe can't think of the future.
We can't set our minds Like Ihave a two-year-old, I have a
five-month-old.
When I was first diagnosed, Icouldn't look at them without
thinking are you going toremember your father?
Are you going to remember me?
And if so, are you going toremember me in a wheelchair?
Are you going to rememberhaving difficulties holding
(44:46):
conversations with me?
How like I would think of that.
So I stopped thinking aboutthat.
Anytime my mind would go tothat, I would change it to now,
I'd change it to the present andI'd appreciate what the moment
I had that I was sharing with atthe current time, like, I'm not
even thinking about Christmas.
When I think about Christmas,then I'd start thinking about
two months from now and then Istarted thinking about six
(45:06):
months.
So I am just very set.
One thing that disease helpsyou with is like I am so good
probably better than 99% ofhumans out there to be present
to stop thinking about thingsahead of time.
So, without getting sidetrackedhere, live in the moment, be
present.
That'll help you stay strongmentally, count your blessings,
(45:28):
tell people people you'll lovethem things.
That is really.
That is really helpful, becausewhen I was negative, those
first few months, those were myfastest months of progression,
so I rapidly progressed.
When I was depressed andemotional and angry and confused
and pissed off, that's when Ilost functionality in my right
(45:49):
arm.
Then I started getting better,then I started doing treatment,
then I started attacking it andfeeling like there's no mountain
that I couldn't climb.
That's when I started seeingmuscle come back.
That's when I started seeingmobility come back and
functionality come back.
So that is that's the one thingI would say is like we got to
make sure that's dialed andthere's other, there's ways to
(46:10):
get help on that.
You know there's there's peopleout there that specialize in
that stuff and they're not hardto find.
You just got to find them.
And reading books I read a lotof books about the power of the
mind and how strong the mind canbe If you believe something,
how things can actually turninto reality.
So look at Dr Bedlock'sreversals.
(46:32):
That's when I first read that.
I was like, oh, this is theother people have done this.
Other people have progressedand gotten lost function and
gotten it back.
Yeah, I can be one of thosepeople.
Lorri Carey (46:43):
So, and it gives you a fight yeah and I need to
bring dr ben lack on here.
So yeah, I need to get him onhere.
He's on my list.
Johnny Rodriguez (46:53):
That's a huge inspiration for, I think,
anybody with this disease.
Go check those out, check outthe common themes.
I did that right away and Iended up coming up with a list
of supplements that I think isjust perfect for what I need to
be taking right now to help alldifferent parts and functions of
my body to be working at ahigher rate.
So there's a lot of hope to behad.
(47:15):
We just have to keep our eyesopen and find them.
If we put our head down, we'renever going to be able to find
any of that.
Lorri Carey (47:20):
Right, right, I love that and keep moving,
however you can.
I found for me.
When I was first diagnosedremember that was over 20 years
ago they said do not exercise.
Do not exercise you, you'regonna burn motor neurons that
(47:40):
eventually you'll need to walk,and it scared me, so I quit
doing everything.
And then, you know, I gainedI'm a small person anyway and I
gained 20 pounds from inactivityin a year and I felt terrible.
And then, after a year, I waslike I'm just going to go back
(48:01):
and do my thing.
If I'm holding onto the wall,if I'm, you know, making any
kind of modification that I needto, I'm going to do what I want
to do and, um, I think that'sreally helped me to stay active,
physically and mentally forsure.
So, okay, tell me aboutAthletes vs ALS.
Johnny Rodriguez (48:27):
So Athletes vs ALS is a.
It's a new foundation I startedabout six months ago.
It's about community.
You know, you kind of touchedon it.
People want to be a part ofcommunity and I don't want to
attack this thing alone and Ithought the best way to attack
this thing would be with fiercecompetitors like myself.
So what I want with theAthletes vs ALS is right now I
(48:50):
want it to bea well-known causeto support in high school and
collegiate sports and as a coach, we get a lot of opportunities
to play for different causes andto show our kids you know what
life is.
You know, have a betterunderstanding and a better
perspective of life, and I thinkthat's all part of it.
So getting into colleges andhigh schools to have an ALS
(49:11):
awareness game or ALS awarenessnight would be a great thing.
To spread the word, spread someawareness about ALS awareness
game or ALS awareness nightwould be a great thing.
To spread the word, spread someawareness about ALS and raise
some funds to devote to research.
Also, little events like wejust we're doing the cold plunge
challenge right now.
We partnered up with plunge andcommemoration of the 10-year
anniversary of the ice bucketchallenge.
(49:32):
Thought we'd put a little spinon it with the craze of ice ice
plunges today, that you knowthat, yeah, that could be fun
and people would want to supportit and help out.
So, yeah, we had that going onwith little virtual races or 5ks
that we can do.
There's so many differentthings that we can do to kind of
bring people together andsupport something.
But so we wanted to do iswanted to create something that
(49:56):
community could be involvedthemselves with, and not just
from the outside but the insideas well.
You know, if there's athletesout there that you know are
suffering from ALS and want toget more involved, we'd love to
hear from you.
Lorri Carey (50:08):
Yeah, I love that.
So it can be any sport, anylevel of team sport, any level
of team, but them adopting alsas the cause, that they want to
do something as a team tosupport right?
Yep, that's correct.
I love that.
(50:28):
Do you have a website thatpeople can get in tune?
Get more information aboutathletes versus als?
Johnny Rodriguez (50:34):
yes, athletes, dash bs, dash alscom.
Okay, search athletes versusals and you'll find us okay,
perfect.
And oh, and follow along on oursocial media, because that's
where really all the updatescome from is through our social
media.
Athletes per se okay, perfect.
Lorri Carey (50:57):
And then are you encouraging them to benefit
augie's quest?
Johnny Rodriguez (51:04):
yeah.
So augie's quest is uh, that'skind of how we got started.
I always wanted to start my own.
I'm an entrepreneur, I have afew different businesses and so
when I was diagnosed I kneweventually I'd want to start my
own.
But I also knew that I had alot of work in front of me and I
didn't want to, didn't reallyfeel like starting something
(51:24):
right away and also with youknow the longevity of this
disease, it doesn't really lastlong.
So I didn't have a lot of timeto create momentum.
So I wanted to attach myself tomomentum and you know this is
it's not something where oneperson succeeds, it's something
where we all succeed.
So I want to be in support ofthat.
I spoke for at Augie's Questone night in March and I felt a
(51:46):
lot of synergy there with thepeople that were there.
As a fitness event.
I met a lot of great yeah and Isaid, you know I, there's some
synergy here, can we keepworking together?
And it kind of made me realize,like you know, let's attach
this to as much momentum as wecan, because if, if one of us
wins, we all win, and so I wantto continue with the momentum
they have.
They've been doing this for 20years now yeah, as long as
(52:09):
you've been diagnosed.
So athletes versus ALS is justa brother organization to their
major foundation of Augie'sQuest to Cure ALS, which has
raised over $100 million.
That's gone.
100% of it has gone to research.
And what I love about Augie'sQuest is we know exactly where
that money is going.
(52:29):
It's going to ALS TDI to fund aresearch facility that's making
the advancements that we wantto see be made.
Lorri Carey (52:37):
Absolutely Both great organizations, great
people.
I've talked to Lynn and Anki onthe podcast over the past four
years and, yeah, so I'm gladthat you're teamed up with them
for sure, with them for sure.
(53:02):
So what is something?
Johnny Rodriguez (53:03):
that you want people to know that they might
not know about als.
So als is, it's something thatslowly it kills the nerves, that
communicates the muscles, whicheventually cause paralysis
throughout the entire body Right, and that eventually leads to
the lungs, cuts your breathingand you know, once you eliminate
breathing there's not muchfurther to go from there.
So one thing that is veryinteresting about this disease
(53:29):
is there's so many differenttypes of it, there's so many
different onsets of it, there'sso many different stages of
progression, how it progresses,how quickly it progresses.
I'm sitting here two years intomine and I progressed very
quickly.
We're to the point where I lostfull control to almost no
control of my right arm, myright hand in about three months
(53:50):
.
Then I get it back, then musclegrows back into my arm and now
I'm seeing a small decline again.
So there's really no way toreally wrap your head around how
this thing's going to go.
So if you do have ALS, there'sno point in trying to figure
that out.
You know God's the only onethat knows the future and for us
(54:10):
to speculate on that is just astrain to our mindsets.
So don't speculate on it.
Like I said, I went, Iprogressed quickly.
I grew muscle back, which isvery rare, um, to the point
where my my bicep to my forearmwas back to normal size, after
seeing it to be just skin andbones.
Um, now I'm progressing again,you know, and in the wrong
(54:32):
direction, but I'm also veryhopeful.
I'm going to get it back in acouple weeks.
So, um, I would just say, don't, don't worry about you know,
don't try to anticipate orpredict what kind of progression
you have or how quickly it'sgoing to go, or when you're
going to lose the next thing,because that's just a dark alley
that is only going to lead tomore progression.
Lorri Carey (54:52):
Good, point, really good point.
I have a lot of peopleobviously ask me what have you
done that is intermittent toyour longevity?
And I'm like I cannot say youknow?
Uh, all I can say is I'm asleep champion.
When I sleep, I sleep, I'm up,I'm up, I move however I can,
(55:18):
and I just think it's the paththat's been chosen for me.
So, all right, before I let yougo, johnny, what are you dying
to tell us?
Johnny Rodriguez (55:29):
I'm dying to tell you and the entire ALS
community and everybodylistening that I just spent the
last four days in Hawaii playingin a very competitive lacrosse
tournament and I won and itwasn't a handout, I won the
tournament MVP of the weekend.
So oh nice it was a huge honor.
(55:52):
I played for the first time inprobably a couple years at that
level and it was a lot of theguys I used to play with that I
in the professional league andnow we're all in our mid-30s and
playing together again.
It's very, very special to beon the field to play six games.
I was the only goalie.
There was no stepping off thefield.
I led the team in playing time.
(56:13):
It was a very vigorouschallenge for my body physically
and I'm definitely feeling it,and I had treatment this weekend
working extra hard.
It was just such a surrealexperience just to be told that
you're you know by a doctor thatyou have a couple of years left
to live.
Try to enjoy it.
And a year later, I'm enjoyingit by still playing the game
(56:33):
that I've always grown up lovingto live.
Try to enjoy it.
And a year later, I'm enjoyingit by still playing the game
that I've always grown up lovingto play with the guys that I
really enjoy playing with.
Lorri Carey (56:40):
So yeah, I bet congratulations, really really
happy to hear that and I betyou'll hit the uh cold plunge
one extra time this week oh,yeah, definitely yeah, oh,
johnny, thank you so much forbeing here, for chatting today
(57:01):
and for sharing your heart andyour aggressive game plan
against als and, in general,thank you for inspiring so many
others simply to not give up and, like I've heard you say, win
(57:22):
the day every single day andjust don't give um.
I appreciate you so much,johnny.
Thank you for being here.
Thanks, lori.
Keep Lori, keep in touch.
Yeah, we'll do.
Okay, thank you, all right, bye.
All right, bye, bye.
Thank you again, johnny, forsharing your beautiful spirit
(57:59):
and for everything that you aredoing through Athletes vs ALS
and for Augie's Quest and, inturn, supporting crucial ALS
research.
I know that's a lot just initself.
(58:22):
And then you add on being ahusband and a father to two
little boys and a varsity highschool lacrosse coach that's a
lot.
Varsity high school lacrossecoach that's a lot.
So just know that we see youand we really, really appreciate
(58:51):
you.
Okay, I have a feeling a lot ofyou who are listening, if you
are in the ALS community, thatyou might have a lot of
questions for Johnny on thedifferent treatments that he's
doing.
So in my show notes I will puta link that will include contact
information for Johnny and justa quick reference, I know you
(59:13):
can find him on Instagram atj3rod r-o-d.
J3rod, and also athletes versusALS both of those on Instagram.
Okay, thank you so much forlistening in.
(59:35):
If you like this episode andyou want to help bring other
people to it, feel free to leavea review.
Wherever you listen on Apple orSpotify, it really does help
other people find this veryspecial community.
Hey, and if you're new here,you can find me pretty much
(59:59):
everywhere on social media, allat I'm Dying to Tell you podcast
.
So Facebook, twitter, instagram, linkedin and even TikTok.
Okay, until next time, knowthat you are loved and not alone
(01:00:25):
.
Thanks for listening.
Uh, even after a hundred episodes, I don't think
I'll ever get tired of thatsweet intro from my guys.
So, thank you, paul andChristian.
Alright, hello, I'm Lori, yourhost of.
(00:22):
I'm Dying to Tell you Thank youfor being here.
If you've been here for a while,you know I created this podcast
when I was in my 15th year ofliving with ALS.
I wanted to share people thatinspired me and really kept me
(00:44):
energized to continue this ALSfight.
Now, at my 20-year mark, Icontinue to meet new people that
really encourage me me and I amso excited to share my new
(01:07):
friend with all of you, someonewho is living with ALS and has
been able to take his experienceover his young 35 years of life
and really put it to test byfinding ALS every single day in
(01:32):
his own way.
Today I am talking to 35 yearold Johnny Rodriguez.
He is a husband and daddy totwo very young sons.
Johnny is also a high schoollacrosse coach in California at
(01:56):
Monarch Day High School.
He's been out there shining hislight to not only raise money
for ALS research, but also inhopes of inspiring me, inspiring
anyone else living with ALS or,I would also say, anyone going
(02:23):
through a really difficult time.
Johnny is able to talk about thepower of his mind and how he
has been living faith over fear.
Even being in his mid-30s, witha very young family, he could
(02:43):
have easily stayed in a verydark place, but has chosen
instead to win every day againstALS, to think of ALS as a
competitor and fight literallyfight it every day, and from
(03:05):
what I've read, what I've seenso far, johnny is winning
against ALS.
So I'm going to jump on Zoomand catch him from California
and hear what he's doing and howhe's doing it.
What he's doing and how he'sdoing it.
(03:25):
So let's go on over to my chatwith Johnny Rodriguez.
Johnny Rodriguez (03:31):
No-transcript good, um, a little beat up.
(09:41):
Uh got back from hawaiiyesterday, last night, so, uh,
just uh, and I was, I wasplaying lacrosse, so my body's,
uh, my body's playing.
Lorri Carey (09:54):
Nice, that's awesome, that's great.
So how are you finding thatyou're doing when you're playing
, like you know, versus a normalgame?
Johnny Rodriguez (10:06):
um, I, I wore it.
So I played six games and, um,it'd probably be good to talk
about this, just because I thinkit'll give some people some
hope.
Yeah, for sure.
But just, you know, I'll giveyou a little bit uh, more of an
answer later.
But yeah, um, I wore down as,as I was probably started off,
about 95% of where I used to beSome restrictions was just
(10:29):
straight to my right hand and myright arm and, um, towards the
end of it I could barely throwthe ball.
So, um, it got to the pointwhere you know my, my body, it's
, we're not, we're not, we'renot regrowing muscle and the
body.
When you know we, we push it.
It doesn't do a good job ofbouncing back so uh, yeah, I
felt that, uh, I felt it a lotthe last day yeah, yeah, that
(10:53):
heaviness, the heaviness.
Lorri Carey (10:56):
Yeah, yeah, I went to top golf yesterday with my
son and his friends and I'm likeI went to eat and then I'm like
let me try, let me try to swinga club, and that.
So I get up there, I pull himback and I'm like, damn, this is
heavy are you giving?
(11:17):
Me the heaviest club, or what?
I'm like no, it shouldn't be.
And then I'm like I hit themall but I barely brought it back
and then I said, use this one,use this driver, it's really
light.
And I tried it and once I gotit like past here, I was able to
(11:39):
throw it back.
But I was like they said youwant to do it again?
I'm like, no, that's good.
I mean I felt like you knowthat was such an accomplishment.
Johnny Rodriguez (11:49):
So yeah, that's awesome.
Lorri Carey (11:51):
Good for you everything, it becomes relative
right absolutely yeah noquestion well, I'm really,
really happy that that we'rechatting.
You know, I've been in thiscircle of for 20 years, over 20
years and it really touches myheart, number one, when I see
(12:15):
someone that is so young andthat is diagnosed with ALS.
And then you really caught myattention when, you know, I
watched a few things and justwitness your spirit and the way
that you are approaching thisnew season of life.
(12:39):
So, you know, thank you forbeing so transparent and for
giving other people an option,you know, to look at things and
to approach life with somethingthat is so devastating.
I think it's really reallyimportant and very powerful,
absolutely yeah.
Yeah, let's just jump back alittle bit.
Johnny Rodriguez (13:11):
Yeah, let's just jump back a little bit.
Before ALS came into your life,what was your routine?
What was your life like?
Life was, you know, I was, youknow, from college I played
lacrosse, I played hockey.
So I've always just had a loton my plate and that's kind of
the theme of it.
That's why I brought that upand I'll start there.
But even in, but even in highschool, I was like I wanted to
play hockey, I wanted to playlacrosse in college and really
didn't get the opportunities todo so.
I was really good in the areaof the country I lived in, which
(13:33):
was Maryland, but it just sohappened.
The sport I played for fun wasthe sport I was best at
nationally.
So I was, you know.
I got some offers to play incollege.
I chose a school that I lovedand I got to compete for a
national championship prettymuch every year.
I was, I was, I was there.
So that led me to professionallacrosse, which you know.
(13:56):
I had a, I had a job I couldhave taken and blah, blah, blah,
but I decided to say no, youknow what I'm going to.
I'm going to make 500 bucks agame and play professional
lacrosse, because I've alwaysdreamed of being a pro athlete
of some kind.
So I did that.
That led me into the lacrosseworld.
That wasn't enough to make aliving, especially living out in
California, so I had to pair it.
(14:16):
I paired it up with coaching.
I was around the game so I knowa lot of the kids were familiar
with me.
A lot of the kids were familiarwith me.
And so I kind of used thatplatform to kind of get into
coaching and kind of help giveback to the game that's given me
so much.
And so, you know, I'm probablyabout 22, 23 years old when I
(14:40):
moved out to California and I'vebeen out here ever since I'm 35
now and I started a fewlacrosse businesses and I'm
still working in those samelacrosse businesses, uh, 13
years later.
So, um, they've treated me welland I get to be around kids and
I get to help, you know, build,build their character up.
So that's where life was, and Iwas running 100 miles an hour.
(15:00):
I had married my wife in 2020.
I had kids.
Shortly after that, I had myfirst kid and before ALS, it was
like I just I was chasing thenext dollar, the next
accomplishment, the nextaccolade, the next tournament
championship, whatever it was Iwas chasing and I wasn't really
paying attention to all theblessings that God is putting
(15:23):
into my life.
Yeah, so I got in the face onOctober 20th 2023, a little over
a year ago with the diagnosisof something that I knew I had
for about a year up until thatpoint.
So, or one of your symptoms, Ifinally got the word that you
have ALS.
So that was a punch in themouth and it kind of opened my
eyes and made me realize, like,what I've been missing, and
(15:45):
that's a beautiful family thatI've had in front of me and, uh,
friends that I consider family,um, out here in California.
And so you know, I can honestlysay up until this point, I mean
since being diagnosed, I haveenjoyed life more than I ever
have.
Yeah, yeah, I get, I know theaudience can't see Nice.
(16:07):
This is Jeff.
Lorri Carey (16:11):
Hello, he's going to take a nap.
Okay, how old is he?
High five, that's almost twoyears old.
Wow, then you have another son.
Johnny Rodriguez (16:25):
Cruz is five months old.
Lorri Carey (16:27):
Oh, Cruz is a little one Okay.
Johnny Rodriguez (16:33):
They are very similar to their names.
So Cruz likes to chill, he'sthe chill master, and Jet is a
menace and goes 100 miles anhour everywhere he goes.
Lorri Carey (16:41):
Oh my gosh.
Now I love the names Jet andand cruise.
Are they named after an athleteor?
Johnny Rodriguez (16:49):
they're not named after an athlete.
That's why we named them.
Okay, coach so much and we'vecoached so many kids that I
never had a jet and I never hada cruise, and neither did she,
and so we tried to findsomething unique that was uh,
that was fun, that they wouldlike, that they would enjoy, you
know, from childhood all theway through adulthood.
(17:09):
So Jet, joseph, jj, and then wehave Cruz, christopher, cece.
We didn't really have a lot ofarguments over the names.
We kind of both agreed to them.
Lorri Carey (17:20):
So I love it.
I love it, oh my gosh.
So you talked about your wife,Christina, and she's a coach as
well.
Johnny Rodriguez (17:31):
So, yeah, so, christina, she is.
She's the rock in my life,she's, she's the real MVP.
Yes, she's also a coach, muchmore decorated of a coach than I
.
Three national championships,three coach of the years to my
zero.
Yes, she's also a coach, muchmore decorated of a coach than I
.
Oh nice, Three nationalchampionships, three coach of
the years to my zero.
She also recently stepped downfrom being a head coach after
(17:54):
finding out I was diagnosed Justbecause we wanted to spend more
time with the family.
And when you're a coach, whenyou're a really good head coach,
you're spending more time withyour kids than you are your
family, and we understood that.
Lorri Carey (18:08):
I got it.
Yeah, my husband was a highschool hockey coach Got it and
he coached kids from mini-miteson up all the way through high
school.
Johnny Rodriguez (18:25):
I know the commitment in the time for sure
A hobby is a big commitment initself, and to be a coach, you
got all that commitment and more.
Lorri Carey (18:36):
Yeah, so you're going about your life, living
life, a young family.
And then what was the firstthing that you thought of when
you were given your diagnosis?
Johnny Rodriguez (18:54):
Like, what was the first thing that came into
your mind?
Well, I was trying to find outwhere my pinched nerve was.
I figured, you know, my muscleswere.
I was just not getting bloodflow or something was going on.
So when he told me I had ALS,um, I, I didn't believe him.
But I, you know, I gave him thebenefit of the doubt and I
quickly pulled out my phonebecause I said that is, that's a
deadly disease.
(19:15):
I mean, that kills peoplepretty quickly.
I knew that much of it and IGoogled it and the first thing
that came up and said it's a twoto three years or two to four
years like that, right on top ofgoogle.
And man, that's when I just got.
I was dizzy, I got confused,scared and like walking out of
(19:40):
that.
I we, I was in the doctor'soffice for the 15 minutes after
that.
I don't remember a single word.
The doctor said after he toldme I had ALS.
It was emotional, as you canimagine, and I was by myself
because, like I said, I didn'tthink anything of it.
So I had to go home and I hadto tell my wife.
I had to tell my wife that Ihad ALS and that was for me that
(20:03):
was.
That was tough, because thenight before we were literally
talking about cruises, whatcruises name was going to be.
We're sitting at the table andjet's sitting there with us and
he's throwing spaghetti andmeatballs at us and thinking
anything of it, because we're soused to it and I remember
thinking like man, this is likeI love this new life that we
have, like it's so muchdifferent.
(20:24):
It's a completely new chapterand I can't wait.
I can't wait for more of this.
And literally the next day I'min the doctor's office finding
out that you know there's nogood news you have ALS.
So it was that was tough, andhaving to tell her it was very
difficult.
In the next couple of weeksthat endured were miserable.
I wasn't just a rock right fromthe get-go.
(20:46):
I was trying to pretend like arock for everybody around me,
but inside I was falling apart.
I went to a church.
I was a faith-driven persongrowing up, but then I grew up
in a Catholic family but asadulthood happened and occurred,
(21:08):
I was busy on the weekend.
That was coaching, and Istarted losing connection with
God and my faith.
And so, you know, I finallystumbled into that church and,
um, after a few weeks of of helland misery and I came out with
a huge weight off my shoulders.
Uh, understood that.
(21:29):
You know.
I just I need to trust him.
Proverbs 3, 5, and 6 is one ofmy favorites.
It's trust the Lord with allyour heart, don't rely on your
own understanding.
In all your ways, acknowledgehim and he will direct your
steps.
You know, it's amazing that allI needed to do was go back into
that church and cry for a fewhours and come out of there with
(21:50):
strength and a new focus and anew understanding that wasn't my
own, that I didn't need tounderstand, and I just needed to
trust that.
You know, if I have this, it'sfor a reason, and my job is to
find out what the reason is.
And you know, he's prepared methroughout my life, through
everything I've done, to compete, to be a competitor, and one
(22:15):
thing sure as hell is I'm goingto be competing with this
disease for a long time.
So, yeah, yeah, ever since then, I've you know, I when,
whenever things go bad and I'mstruggling or you know a new,
there's a new weakness that Idiscover physically within my
body, I just remind myself tofocus on him and not focus on
whatever that weakness is.
Lorri Carey (22:29):
And, yeah, it really keeps me strong there are
only certain things that youcan control, and I think when
you realize that you're not thedriver in this life, then it's
what do I do with it?
You know?
Johnny Rodriguez (22:48):
absolutely so that's one of the things like
when, as an athlete, and all theathletes out there get it is,
you know, when you go into amatch or a game or a competition
, whatever that is in your sport, if you do your best, you're
going to be proud of that effort, right?
Yeah, the victory or defeat isout of our control, but what is
(23:08):
out of control is to give it ourall, be prepared and and
compete with it.
So, um, that's all I can do,and I'm I am at peace with that.
Lorri Carey (23:16):
Absolutely.
That's awesome.
So one of the things that hasbeen really reinforced from so
many people that I've talked toon the podcast is the value of
community, and I know you talkabout leaving the east coast,
(23:37):
going to the west coast, and Imean your lacrosse family, your
school family and your friendsthere.
Tell me what that community hasdone for you in the past year,
like what difference have theymade?
Johnny Rodriguez (23:57):
my lacrosse community specifically yeah well
, I, I was not a I've never beena handout guy, um, and this is
just from the get-go and I'llget through it from each like
the sport as a whole.
But, um, a couple of peopleapproached me.
You know, with all thistreatment, you should probably
have a go fund me, and you knowI've I've never been one to be
(24:18):
comfortable with that.
So the lacrosse community one ofthe big companies that I used
to have a sponsorship from butalso was close friends with, was
, was a company called the eastcoast eyes, out of baltimore,
and, um, they reached out to meand I said you know what?
I'm not really interested in agofundme.
But you know, they said,whatever ways we can support, we
(24:39):
want to let you know.
They ended up communicatingwith my mother, reaching out to
my mother and saying, hey, wewant to do this for johnny is,
are you okay with it?
And so I had the GoFundMe setup and it was, uh, reposted by a
bunch of people with the newsthat you know, I was diagnosed
with ALS and that we needed somemoney for some treatment and
some therapies that were to bein my near future.
(25:01):
And it was incredible.
I mean, it was repost, it wasshared by so many different
people and I think I had over athousand donations within the
first couple of weeks.
Lorri Carey (25:14):
That's incredible.
Johnny Rodriguez (25:15):
It was special and it kind of makes you feel,
you know, because as a coachyou're just, it's not about you,
it's about everybody else andyou know you kind of lose sight
of you know, ever having peopledoing something for you, you're
always doing something for otherpeople.
So when the lacrosse communitycame together, it wasn't just
you know one company, it wasn'tjust one area of the country, it
(25:40):
was, it was all over thecountry.
It was people I compete with,people that you know, ex players
that I've competed with.
It was ex coaches that I'vecoached against um, players that
have played for me, uh, playersthat have played with me.
So it was just.
It was great to see that youknow, there's still even though
I haven't talked to or spoken toso many people in so long, that
people are really stillconcerned and I still have a
place in their heart and thatreally that motivated and
(26:03):
inspired me.
So all the prayers thatcontinue to come in and all the
messages really helped lift meup in a time that was very dark.
Lorri Carey (26:12):
I don't think that you realize the impact you know,
as a coach, that you're havingon your players.
I mean, like I was talkingabout my husband being a hockey
coach, I think he's had three,two or three hockey players come
back and ask him to officiatetheir winning.
Johnny Rodriguez (26:31):
Wow.
Lorri Carey (26:33):
And then he had the goalie of our high school rival
do the same, you know, and soI'm like that really tells you.
You know, in the midst ofthrowing the clipboard and this
and that and getting thrown outof the game, like it shows you
(26:56):
what those kids are taking awayand just like you're saying,
with all the love and thesupport and the action that they
have taken to support you,really says how you are touching
their heart and their lives,you know absolutely, yeah, the
the other side of this communityis my, my close community of,
(27:17):
uh, my, the modern day lacrossecommunity, which is the school
that I've been at coaching atfor the last decade.
Johnny Rodriguez (27:25):
Uh, certainly a powerhouse in in academics and
athletics and one of the bestschools in the country.
In my opinion and you know, ina competitive world it's very
cutthroat and there's usuallynot a lot of feel to it, and
there's certainly a lot of feelto this community, a lot of
honor, glory and love comingfrom modern day lacrosse.
When I got diagnosed, I steppeddown from being a head coach
(27:48):
just prior to the diagnosis.
Actually, I knew something waswrong with me, but I was so busy
at the time I just never hadtime to really understand why I
was experiencing the symptoms Iwas experiencing.
Lorri Carey (28:01):
I mean if.
Johnny Rodriguez (28:01):
I would have even had time to look it up.
I probably would have found outthat I had ALS a year prior to
being diagnosed.
So it was just I was needed andthe school completely
understood.
I remember I first group tofind out outside my family and
my friends was my players.
I, like before, like outside ofmy really close friends and my
(28:22):
family, my players knew beforeanybody else.
I brought them into a chapeland I explained what ALS was.
I explained that I had it and Ididn't know what my future
looked like, I didn't know whichdirection I was going in, but
that I was very grateful to be apart of this group and when I
was with them it didn't feellike I had any diagnosis, it
(28:43):
felt like I was living a normallife and that I wanted to
continue or to that and still tothis day.
That's what they give me.
I mean, every time I that field, I feel like you know there's
all this weight is weights offmy shoulders, but you still go
through life.
Like you know, I'm still tryingto type on a keyboard and it
takes me twice, three times aslong to type as it used to
(29:04):
because you know my fingers arehitting the buttons the wrong
way, and so it's constantly inyour mind.
But when you're out there onthe field, you know it's just
you're.
Lorri Carey (29:11):
Just you're where you're supposed to be at that
very moment and it feels great.
Johnny Rodriguez (29:16):
You know I love, like I said at the
beginning, this game has givenme so much throughout my last 20
, 25 years playing it so manygreat people in my life, so many
things I've learned from it,and people in my life so many
things I've learned from it andit's just been a tool to create
a stronger character within meand make me a better man I am.
Lorri Carey (29:37):
So I want to, you know, leave that and inspire
those kids to want more out oftheir lives and to feel like,
when they graduate, they can dosomething to change the world
for the better yeah, I, I lovethat, and you made me think of
several people I've talked tohave told me that all they
really want in their communityis to do the things that they've
(30:03):
always done with that personbefore ALS, like come over,
drink a beer, watch a game.
You know whatever it is, butwhatever you used to do is what
you crave.
You know, and I feel likethat's exactly what you're
(30:24):
getting when you're on the fieldwith your team.
You're getting to be coached,you're getting to be athlete and
you're able to be their leader,just like you always have.
Johnny Rodriguez (30:39):
That's right.
Yeah, and it's a specialfeeling, yeah, even though we're
usually out there right nowit's the off season, so we're
out there at like 6 AM, but evenit's fun to get up.
It's just to get out there withthe boys and to see them wake
up and to get into them and tounderstand, like you know, this
is, this is uh, whateverchallenges, and we want to
(31:00):
constantly challenge them sothey continue to find some
growth and whether it's a game,it's on the field or off the
field.
Lorri Carey (31:06):
So, yeah, it's always been a joy in my life
yeah, I heard you say life is somuch bigger than lacrosse
relative to what you want toteach your players, so I was
just curious if you have seenanything come out of that
(31:30):
already and maybe you've had aconversation with a player that
is showing you that they'regetting it like they're growing
as a young man by watching youhandle adversity in the way that
you are.
Johnny Rodriguez (31:49):
Yeah, I'm aware that you know, every time
I I step on the field and I'm infront of those boys, they
understand what I'm goingthrough, or they, you know, they
, they, they know what I'mdealing with.
Um, so it's very important tome to understand, you know,
there's I really have to go outthere and and be that guy that
that I was born to be.
You know, the guy full energy,the guy with a big smile on his
(32:10):
face that's ready to get afterit, ready to be focused and
ready to have a good time.
And I think it's not like it'sa face I put on, it's just
something that I understand.
You know, if I can't walk outthere at 6am looking like I'm
tired being in the position I'min, so you know it's it's an
(32:31):
honor to do so and, like I said,life is so much bigger than the
game of lacrosse and, as acoach, I wouldn't be doing this
for as long as I've been doingit if I thought lacrosse was
what all what it's all about.
So it's just the tool that weuse to, um, refine these guys
and refine their character and,um, cultivate them into being
the best people they can be atthe high school level.
That's why I never really wasinterested in a college coaching
(32:52):
job was because high schoolyou're still so formable that
the foundation is still beingbuilt in high school, whereas in
college it's kind of alreadybuilt.
You're kind of just tailoringit to a point.
But I really like watching youknow the development from the
incoming freshman to thegraduated senior.
Lorri Carey (33:12):
And with you and Christina both being coaches,
and it sounds like she's thehead coach, not like she's the
head coach in the house.
Johnny Rodriguez (33:22):
I'm the one that spends all the time
coaching.
She's the one that wins all theawards.
Lorri Carey (33:27):
Oh, there you go.
But from your past history doyou think that's helped you guys
take this new time in life andfigure out a game plan how to
handle it, how to approach eachday.
You know, like structure anddiscipline.
Johnny Rodriguez (33:47):
Yeah, you know , I think coaching is, uh,
definitely something that hashelped us.
I mean, it's it's why I'm doingso well.
I think is because of how wellI'm taking care of my body right
now.
Um, and I think that came froma strategic approach, a game
plan to compete.
You know, just like we do, andwhen we prepare for, for games
(34:08):
whether it's boys across orgirls across, I mean, there's
still we.
We watch film, we create ascouting report, we understand
what the opponent's weaknessesare, what, what are some, what
our strengths are, what theirstrengths are.
And same thing with disease howthis disease can hurt you, how
you know what you do with youractivity, how you can leverage
the disease and we don't want toleverage the disease and watch
(34:29):
ourselves progress Right.
So it's understanding bothsides and coming up with
something that you want topresent this disease and say
this is what, this is how I'mgoing to attack you and this is
what we're going to do.
And so I think, yeah, I think Ithink coaching played a big
part of it.
I think everything I've donehas played a big part of it,
even, you know, as a playercompeting.
You know there's not a day thatgoes by that I don't that I
(34:52):
just want to sit back, cause ifI'm sitting back and I'm not
doing anything to get better,this disease isn't taking any
days off, you know.
So that's why I don't.
I don't take days off either.
No matter what, I am doingsomething for three to four
hours a day to compete with thisthing, to put my body in the
best position to heal.
Lorri Carey (35:11):
Tell me about what you're doing right now as far as
your regimen.
Johnny Rodriguez (35:16):
Yep, yep.
So the regimen it is I'llpreface it Everybody's different
, and do I know whatspecifically is working for me?
No, and it's tough because I doso much, and so usually the day
it starts or ends with an icebath and a sauna.
The ice bath really helps withinflammation I have a really
(35:39):
stiff neck, so you know, myrotation of my neck is about as
half as much as it would beafter I get out of the ice bath
and the sauna helps withinflammation too, and
exotoxicity helps remove toxinsfrom the body.
I also use a device called theTenet Biomodulator which I wear
(36:00):
pretty much throughout the day.
I wear electrode patchesthroughout the day to stimulate
charge within the body, withinthe cells at a cellular level,
so that my body can function ata higher rate.
I can feel like I have moreenergy, and at night it's
followed by an hour-long regimenthat I do.
(36:23):
That includes foot plates andhand electrodes and basically to
help my body, the energy movethrough my body at a higher rate
and a better revolution.
So it's like our bodies are likebatteries.
If we are drained, there's aproblem with our charge.
We need to charge, and we don'tjust always get that charge
(36:43):
through sleeping like I.
I did a cellular test and I hada very, very scary low charge
within myself.
So it was at like I don't knowwhat it was called the me test,
and I was at like a percentagelevel, like a 7% or 8% of charge
, where I was supposed to be ata 25% to 30% level of charge,
and so once I started using thatdevice, I felt like I had a lot
(37:06):
more energy throughout the day.
I use a Beamer mat, I sleep ona beamer mat and wake up to it.
It comes with a few otherattachments that I use for my
neck and my lower back whenthings get sore, and that's a
pulse electromagnetic frequencydevice.
It's a medical device that Iwould recommend because it's so
easy.
I would recommend that to a lotof people.
(37:28):
Because it's so easy.
I would recommend that to a lotof people and that helps with
blood circulation.
I do a lot of body work.
I stretch a lot.
I do assisted stretching onceor twice a week for an hour so
that somebody's stretching me.
Shout out stretch labs, andthat's been very helpful and I
always find like I'll get likeone or two guys that I can work
(37:50):
with repeatedly because they'velearned my body.
It's the same thing withmassages.
I get massages twice to do.
Didn't even know now like I canfeel like okay, after like two
or three sessions this guy'sstarting to pick up on like what
muscles are always tight andwhat problems I usually.
So I like sticking with one guyas opposed to, you know, just
going to a random massage placeand getting who's ever available
(38:12):
.
Lorri Carey (38:12):
Yeah, yeah.
Johnny Rodriguez (38:14):
The body works crucial that keeps me feeling
good Cause, after about a weekof no massage, I'm really like
my shoulders start to turn inand um, I'm just like a, like a
walking bandaid at that point.
Um, I do meditation now and themeditation has helped with my
vesiculations.
I feel like I'm in a highstress environment or things are
(38:35):
.
I'm running too fast, I feellike things are.
You know, my muscles start topop a little bit more, and so
the meditation has helped a lot.
That's about 20 minutes everyother day, sometimes every day.
You know, in addition to thebody work, I do cupping and
scraping and things like that,but I also do qigong, which is
(38:58):
the qi, which is the energywithin the body, and I have a
guy.
He's.
It's kind of like if, if I wereto have a therapist, that'd be
my therapist.
He's the guy that comes in ifI'm feeling, if I'm feeling a
one percent sorry for myselfthat day, he's, he's going to
kick me out of there and saycome back when you're ready to
talk to me.
Um, he's, um, he's.
Not only that, he'll work on meand he'll work with my chi and
(39:21):
my energy levels.
And I always come out of therefeeling strong, like if I'm
feeling weak, going in mentallyweak even a little bit, I come
out of there feeling like I'mfeeling weak, going in mentally
weak even a little bit.
I come out of there feelinglike I'm going to beat this
thing every single time.
Yeah, so that's, that's reallycool.
And I would have laughed atthat a year or two ago.
I was never into that, likebelieving that stuff but that
would work, but it really has.
(39:42):
I mean, it has really workedfor me.
So yeah.
One of the two biggest things Ithink I really enjoy that I
would be scared without would bea CVAC, which is it's a
hypo-barric chamber.
It goes up and down.
I know you were talking toAaron Lazar a little while ago.
I asked him to come down andjoin me on one of those in
(40:02):
Newport Beach.
Lorri Carey (40:03):
Oh nice.
Johnny Rodriguez (40:04):
But I'm in those twice a week.
It's a pressurized chamber.
It takes you up to like 30,000feet what that pressure would
feel like and then it'll justslam you right down to zero and
it'll take you back up and downand up and down.
So if you think of a emptywater bottle, plastic water
bottle, that thing's going toexpand and contract as it goes
up and down respectively.
(40:25):
So that's what it's providing acellular workout, and it's
incredible.
It's great for the mitochondriato really support those cells.
And then the last thing I'llshare is Skinar S-C-E-N-A-R.
Daniel Palmer is my girl atAscent.
She's the specialist that workswith that device on me and it's
(40:50):
a nerve regeneration type ofdevice.
So and I know this one works,because I really struggled to
drink from a water bottle and toeven hold up a fork with my
right hand.
And when I before I startedthat and after about I'd say,
six weeks to eight weeks, Istarted getting my muscle back.
I started seeing muscle regrow,started being able to drink out
(41:13):
of a water bottle and Icouldn't even pick up my kid out
of the crib.
Then all of a sudden I can pickup a kid a year later that's
almost two now and I can put himover my head onto my shoulders.
So I saw, and so what that'sdoing is she's going into my
neck, where my arm muscles werepretty much toast my forearm, my
(41:36):
extensors, my brachioradialisthey were pretty much
non-existent, um, there was nomuscle tone in them.
And she would go into my neckand she'd hit certain nerves
that would signal, that wouldblast signal into those muscles
that would actually make themcontract, you know, for my neck.
And then after the six weeks orso, eight weeks, whatever that
was, I started slowly feelinglike oh, I can start, my
(41:57):
handwriting is getting better, Ican start, you know, I can
drink out of a water bottle, Ican eat with a fork.
So much better now.
That's been really good and I'dsay that's one of my favorite
therapies.
And I know it's tough for theaudience because not everybody
has access to that.
We've been, I've been talkingto her and the people at Ascent
(42:19):
and Advotation in Newport Beach.
They're incredible people.
It's led by Heather Henneker.
They have just opened theirhearts to this ALS community and
they want to do more with itbecause they're seeing so many
more ALS patients find out aboutthese things.
They're literally moving into anew facility in a couple days
(42:44):
just so that they can keep allthese things coming.
Lorri Carey (42:48):
Somewhere.
Yeah, that's great and, likeyou said, I would say that you
never know exactly what's doingwhat, but hey, if it's working
for you were.
After you've been entertainingall these different forms of
(43:19):
treatment.
Johnny Rodriguez (43:21):
Are you noticing muscle loss, you know,
at a slower rate or yeah, if Icould give you know, some advice
to people out there dealingwith the same thing.
I think mentally, when I wasnot doing great the first couple
I'd say month and a half ofhaving this disease.
(43:41):
I mean, if I had to give someadvice to the other ALS patients
out there and I would love todo that because I have had a lot
of success and I'm so gratefulfor it.
I thank God for it every dayand that's.
I want to share it with people.
I just want to always prefaceit with it's working for me and
I can't promise it's working foreverybody else.
But some of the things that Iwould really recommend is mental
(44:03):
fortitude is number one.
We have to find some peacewithin this disease.
You have to find the benefitsof it.
I mean, it's so wild to be likeyou have a terminal illness and
the benefits of it.
Like we have to realize that.
You know, like I mentionedearlier, when I got punched in
the mouth with this disease, Irealized how beautiful of a life
(44:25):
I had in front of me for thefirst time ever.
We have to see those things andwe can't think of the future.
We can't set our minds Like Ihave a two-year-old, I have a
five-month-old.
When I was first diagnosed, Icouldn't look at them without
thinking are you going toremember your father?
Are you going to remember me?
And if so, are you going toremember me in a wheelchair?
Are you going to rememberhaving difficulties holding
(44:46):
conversations with me?
How like I would think of that.
So I stopped thinking aboutthat.
Anytime my mind would go tothat, I would change it to now,
I'd change it to the present andI'd appreciate what the moment
I had that I was sharing with atthe current time, like, I'm not
even thinking about Christmas.
When I think about Christmas,then I'd start thinking about
two months from now and then Istarted thinking about six
(45:06):
months.
So I am just very set.
One thing that disease helpsyou with is like I am so good
probably better than 99% ofhumans out there to be present
to stop thinking about thingsahead of time.
So, without getting sidetrackedhere, live in the moment, be
present.
That'll help you stay strongmentally, count your blessings,
(45:28):
tell people people you'll lovethem things.
That is really.
That is really helpful, becausewhen I was negative, those
first few months, those were myfastest months of progression,
so I rapidly progressed.
When I was depressed andemotional and angry and confused
and pissed off, that's when Ilost functionality in my right
(45:49):
arm.
Then I started getting better,then I started doing treatment,
then I started attacking it andfeeling like there's no mountain
that I couldn't climb.
That's when I started seeingmuscle come back.
That's when I started seeingmobility come back and
functionality come back.
So that is that's the one thingI would say is like we got to
make sure that's dialed andthere's other, there's ways to
(46:10):
get help on that.
You know there's there's peopleout there that specialize in
that stuff and they're not hardto find.
You just got to find them.
And reading books I read a lotof books about the power of the
mind and how strong the mind canbe If you believe something,
how things can actually turninto reality.
So look at Dr Bedlock'sreversals.
(46:32):
That's when I first read that.
I was like, oh, this is theother people have done this.
Other people have progressedand gotten lost function and
gotten it back.
Yeah, I can be one of thosepeople.
Lorri Carey (46:43):
So, and it gives you a fight yeah and I need to
bring dr ben lack on here.
So yeah, I need to get him onhere.
He's on my list.
Johnny Rodriguez (46:53):
That's a huge inspiration for, I think,
anybody with this disease.
Go check those out, check outthe common themes.
I did that right away and Iended up coming up with a list
of supplements that I think isjust perfect for what I need to
be taking right now to help alldifferent parts and functions of
my body to be working at ahigher rate.
So there's a lot of hope to behad.
(47:15):
We just have to keep our eyesopen and find them.
If we put our head down, we'renever going to be able to find
any of that.
Lorri Carey (47:20):
Right, right, I love that and keep moving,
however you can.
I found for me.
When I was first diagnosedremember that was over 20 years
ago they said do not exercise.
Do not exercise you, you'regonna burn motor neurons that
(47:40):
eventually you'll need to walk,and it scared me, so I quit
doing everything.
And then, you know, I gainedI'm a small person anyway and I
gained 20 pounds from inactivityin a year and I felt terrible.
And then, after a year, I waslike I'm just going to go back
(48:01):
and do my thing.
If I'm holding onto the wall,if I'm, you know, making any
kind of modification that I needto, I'm going to do what I want
to do and, um, I think that'sreally helped me to stay active,
physically and mentally forsure.
So, okay, tell me aboutAthletes vs ALS.
Johnny Rodriguez (48:27):
So Athletes vs ALS is a.
It's a new foundation I startedabout six months ago.
It's about community.
You know, you kind of touchedon it.
People want to be a part ofcommunity and I don't want to
attack this thing alone and Ithought the best way to attack
this thing would be with fiercecompetitors like myself.
So what I want with theAthletes vs ALS is right now I
(48:50):
want it to bea well-known causeto support in high school and
collegiate sports and as a coach, we get a lot of opportunities
to play for different causes andto show our kids you know what
life is.
You know, have a betterunderstanding and a better
perspective of life, and I thinkthat's all part of it.
So getting into colleges andhigh schools to have an ALS
(49:11):
awareness game or ALS awarenessnight would be a great thing.
To spread the word, spread someawareness about ALS awareness
game or ALS awareness nightwould be a great thing.
To spread the word, spread someawareness about ALS and raise
some funds to devote to research.
Also, little events like wejust we're doing the cold plunge
challenge right now.
We partnered up with plunge andcommemoration of the 10-year
anniversary of the ice bucketchallenge.
(49:32):
Thought we'd put a little spinon it with the craze of ice ice
plunges today, that you knowthat, yeah, that could be fun
and people would want to supportit and help out.
So, yeah, we had that going onwith little virtual races or 5ks
that we can do.
There's so many differentthings that we can do to kind of
bring people together andsupport something.
But so we wanted to do iswanted to create something that
(49:56):
community could be involvedthemselves with, and not just
from the outside but the insideas well.
You know, if there's athletesout there that you know are
suffering from ALS and want toget more involved, we'd love to
hear from you.
Lorri Carey (50:08):
Yeah, I love that.
So it can be any sport, anylevel of team sport, any level
of team, but them adopting alsas the cause, that they want to
do something as a team tosupport right?
Yep, that's correct.
I love that.
(50:28):
Do you have a website thatpeople can get in tune?
Get more information aboutathletes versus als?
Johnny Rodriguez (50:34):
yes, athletes, dash bs, dash alscom.
Okay, search athletes versusals and you'll find us okay,
perfect.
And oh, and follow along on oursocial media, because that's
where really all the updatescome from is through our social
media.
Athletes per se okay, perfect.
Lorri Carey (50:57):
And then are you encouraging them to benefit
augie's quest?
Johnny Rodriguez (51:04):
yeah.
So augie's quest is uh, that'skind of how we got started.
I always wanted to start my own.
I'm an entrepreneur, I have afew different businesses and so
when I was diagnosed I kneweventually I'd want to start my
own.
But I also knew that I had alot of work in front of me and I
didn't want to, didn't reallyfeel like starting something
(51:24):
right away and also with youknow the longevity of this
disease, it doesn't really lastlong.
So I didn't have a lot of timeto create momentum.
So I wanted to attach myself tomomentum and you know this is
it's not something where oneperson succeeds, it's something
where we all succeed.
So I want to be in support ofthat.
I spoke for at Augie's Questone night in March and I felt a
(51:46):
lot of synergy there with thepeople that were there.
As a fitness event.
I met a lot of great yeah and Isaid, you know I, there's some
synergy here, can we keepworking together?
And it kind of made me realize,like you know, let's attach
this to as much momentum as wecan, because if, if one of us
wins, we all win, and so I wantto continue with the momentum
they have.
They've been doing this for 20years now yeah, as long as
(52:09):
you've been diagnosed.
So athletes versus ALS is justa brother organization to their
major foundation of Augie'sQuest to Cure ALS, which has
raised over $100 million.
That's gone.
100% of it has gone to research.
And what I love about Augie'sQuest is we know exactly where
that money is going.
(52:29):
It's going to ALS TDI to fund aresearch facility that's making
the advancements that we wantto see be made.
Lorri Carey (52:37):
Absolutely Both great organizations, great
people.
I've talked to Lynn and Anki onthe podcast over the past four
years and, yeah, so I'm gladthat you're teamed up with them
for sure, with them for sure.
(53:02):
So what is something?
Johnny Rodriguez (53:03):
that you want people to know that they might
not know about als.
So als is, it's something thatslowly it kills the nerves, that
communicates the muscles, whicheventually cause paralysis
throughout the entire body Right, and that eventually leads to
the lungs, cuts your breathingand you know, once you eliminate
breathing there's not muchfurther to go from there.
So one thing that is veryinteresting about this disease
(53:29):
is there's so many differenttypes of it, there's so many
different onsets of it, there'sso many different stages of
progression, how it progresses,how quickly it progresses.
I'm sitting here two years intomine and I progressed very
quickly.
We're to the point where I lostfull control to almost no
control of my right arm, myright hand in about three months
(53:50):
.
Then I get it back, then musclegrows back into my arm and now
I'm seeing a small decline again.
So there's really no way toreally wrap your head around how
this thing's going to go.
So if you do have ALS, there'sno point in trying to figure
that out.
You know God's the only onethat knows the future and for us
(54:10):
to speculate on that is just astrain to our mindsets.
So don't speculate on it.
Like I said, I went, Iprogressed quickly.
I grew muscle back, which isvery rare, um, to the point
where my my bicep to my forearmwas back to normal size, after
seeing it to be just skin andbones.
Um, now I'm progressing again,you know, and in the wrong
(54:32):
direction, but I'm also veryhopeful.
I'm going to get it back in acouple weeks.
So, um, I would just say, don't, don't worry about you know,
don't try to anticipate orpredict what kind of progression
you have or how quickly it'sgoing to go, or when you're
going to lose the next thing,because that's just a dark alley
that is only going to lead tomore progression.
Lorri Carey (54:52):
Good, point, really good point.
I have a lot of peopleobviously ask me what have you
done that is intermittent toyour longevity?
And I'm like I cannot say youknow?
Uh, all I can say is I'm asleep champion.
When I sleep, I sleep, I'm up,I'm up, I move however I can,
(55:18):
and I just think it's the paththat's been chosen for me.
So, all right, before I let yougo, johnny, what are you dying
to tell us?
Johnny Rodriguez (55:29):
I'm dying to tell you and the entire ALS
community and everybodylistening that I just spent the
last four days in Hawaii playingin a very competitive lacrosse
tournament and I won and itwasn't a handout, I won the
tournament MVP of the weekend.
So oh nice it was a huge honor.
(55:52):
I played for the first time inprobably a couple years at that
level and it was a lot of theguys I used to play with that I
in the professional league andnow we're all in our mid-30s and
playing together again.
It's very, very special to beon the field to play six games.
I was the only goalie.
There was no stepping off thefield.
I led the team in playing time.
(56:13):
It was a very vigorouschallenge for my body physically
and I'm definitely feeling it,and I had treatment this weekend
working extra hard.
It was just such a surrealexperience just to be told that
you're you know by a doctor thatyou have a couple of years left
to live.
Try to enjoy it.
And a year later, I'm enjoyingit by still playing the game
(56:33):
that I've always grown up lovingto live.
Try to enjoy it.
And a year later, I'm enjoyingit by still playing the game
that I've always grown up lovingto play with the guys that I
really enjoy playing with.
Lorri Carey (56:40):
So yeah, I bet congratulations, really really
happy to hear that and I betyou'll hit the uh cold plunge
one extra time this week oh,yeah, definitely yeah, oh,
johnny, thank you so much forbeing here, for chatting today
(57:01):
and for sharing your heart andyour aggressive game plan
against als and, in general,thank you for inspiring so many
others simply to not give up and, like I've heard you say, win
(57:22):
the day every single day andjust don't give um.
I appreciate you so much,johnny.
Thank you for being here.
Thanks, lori.
Keep Lori, keep in touch.
Yeah, we'll do.
Okay, thank you, all right, bye.
All right, bye, bye.
Thank you again, johnny, forsharing your beautiful spirit
(57:59):
and for everything that you aredoing through Athletes vs ALS
and for Augie's Quest and, inturn, supporting crucial ALS
research.
I know that's a lot just initself.
(58:22):
And then you add on being ahusband and a father to two
little boys and a varsity highschool lacrosse coach that's a
lot.
Varsity high school lacrossecoach that's a lot.
So just know that we see youand we really, really appreciate
(58:51):
you.
Okay, I have a feeling a lot ofyou who are listening, if you
are in the ALS community, thatyou might have a lot of
questions for Johnny on thedifferent treatments that he's
doing.
So in my show notes I will puta link that will include contact
information for Johnny and justa quick reference, I know you
(59:13):
can find him on Instagram atj3rod r-o-d.
J3rod, and also athletes versusALS both of those on Instagram.
Okay, thank you so much forlistening in.
(59:35):
If you like this episode andyou want to help bring other
people to it, feel free to leavea review.
Wherever you listen on Apple orSpotify, it really does help
other people find this veryspecial community.
Hey, and if you're new here,you can find me pretty much
(59:59):
everywhere on social media, allat I'm Dying to Tell you podcast
.
So Facebook, twitter, instagram, linkedin and even TikTok.
Okay, until next time, knowthat you are loved and not alone
(01:00:25):
.
Thanks for listening.
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