I'm Dying to Tell You
I'm Dying to Tell You
Facing ALS with Resilience: Johnny Rodriguez's Inspiring Journey
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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Uh, even after a hundred episodes, I don't think I'll ever get tired of that sweet intro from my guys. So, thank you, paul and Christian. Alright, hello, I'm Lori, your host of. I'm Dying to Tell you Thank you for being here.
Lorri Carey:If you've been here for a while, you know I created this podcast when I was in my 15th year of living with ALS. I wanted to share people that inspired me and really kept me energized to continue this ALS fight. Now, at my 20-year mark, I continue to meet new people that really encourage me me and I am so excited to share my new friend with all of you, someone who is living with ALS and has been able to take his experience over his young 35 years of life and really put it to test by finding ALS every single day in his own way. Today I am talking to 35 year old Johnny Rodriguez. He is a husband and daddy to two very young sons. Johnny is also a high school lacrosse coach in California at Monarch Day High School. He's been out there shining his light to not only raise money for ALS research, but also in hopes of inspiring me, inspiring anyone else living with ALS or, I would also say, anyone going through a really difficult time.
Lorri Carey:Johnny is able to talk about the power of his mind and how he has been living faith over fear. Even being in his mid-30s, with a very young family, he could have easily stayed in a very dark place, but has chosen instead to win every day against ALS, to think of ALS as a competitor and fight literally fight it every day, and from what I've read, what I've seen so far, johnny is winning against ALS. So I'm going to jump on Zoom and catch him from California and hear what he's doing and how he's doing it. What he's doing and how he's doing it. So let's go on over to my chat with Johnny Rodriguez.
Johnny Rodriguez:No-transcript good, um, a little beat up. Uh got back from hawaii yesterday, last night, so, uh, just uh, and I was, I was playing lacrosse, so my body's, uh, my body's playing.
Lorri Carey:Nice, that's awesome, that's great. So how are you finding that you're doing when you're playing, like you know, versus a normal game?
Johnny Rodriguez:um, I, I wore it. So I played six games and, um, it'd probably be good to talk about this, just because I think it'll give some people some hope. Yeah, for sure. But just, you know, I'll give you 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 be Some restrictions was just straight to my right hand and my right arm and, um, towards the end of it I could barely throw the ball. So, um, it got to the point where you know my, my body, it's, we're not, we're not, we're not regrowing muscle and the body. When you know we, we push it.
Johnny Rodriguez:It doesn't do a good job of bouncing back so uh, yeah, I felt that, uh, I felt it a lot the last day yeah, yeah, that heaviness, the heaviness.
Lorri Carey:Yeah, yeah, I went to top golf yesterday with my son and his friends and I'm like I went to eat and then I'm like let me try, let me try to swing a club, and that. So I get up there, I pull him back and I'm like, damn, this is heavy are you giving? Me the heaviest club, or what?
Lorri Carey:I'm like no, it shouldn't be. And then I'm like I hit them all 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 got it like past here, I was able to throw it back. But I was like they said you want to do it again? I'm like, no, that's good. I mean I felt like you know that was such an accomplishment.
Johnny Rodriguez:So yeah, that's awesome.
Lorri Carey:Good for you everything, it becomes relative right absolutely yeah no question well, I'm really, really happy that that we're chatting. You know, I've been in this circle of for 20 years, over 20 years and it really touches my heart, number one, when I see someone that is so young and that is diagnosed with ALS. And then you really caught my attention when, you know, I watched a few things and just witness your spirit and the way that you are approaching this new season of life. So, you know, thank you for being so transparent and for giving other people an option, you know, to look at things and to approach life with something that is so devastating. I think it's really really important and very powerful, absolutely yeah. Yeah, let's just jump back a little bit.
Johnny Rodriguez: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, you know, from college I played lacrosse, I played hockey. So I've always just had a lot on my plate and that's kind of the theme of it. That's why I brought that up and I'll start there.
Johnny Rodriguez:But even in, but even in high school, I was like I wanted to play hockey, I wanted to play lacrosse in college and really didn't get the opportunities to do so. I was really good in the area of the country I lived in, which was Maryland, but it just so happened. The sport I played for fun was the sport I was best at nationally. So I was, you know. I got some offers to play in college. I chose a school that I loved and I got to compete for a national championship pretty much every year. I was, I was, I was there.
Johnny Rodriguez:So that led me to professional lacrosse, which you know. I had a, I had a job I could have taken and blah, blah, blah, but I decided to say no, you know what I'm going to. I'm going to make 500 bucks a game and play professional lacrosse, because I've always dreamed of being a pro athlete of some kind. So I did that. That led me into the lacrosse world. That wasn't enough to make a living, especially living out in California, so I had to pair it. I paired it up with coaching. I was around the game so I know a lot of the kids were familiar with me. A lot of the kids were familiar with me.
Johnny Rodriguez:And so I kind of used that platform to kind of get into coaching and kind of help give back to the game that's given me so much. And so, you know, I'm probably about 22, 23 years old when I moved out to California and I've been out here ever since I'm 35 now and I started a few lacrosse businesses and I'm still working in those same lacrosse businesses, uh, 13 years later. So, um, they've treated me well and 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 I was running 100 miles an hour. I had married my wife in 2020. I had kids.
Johnny Rodriguez:Shortly after that, I had my first kid and before ALS, it was like I just I was chasing the next dollar, the next accomplishment, the next accolade, the next tournament championship, whatever it was I was chasing and I wasn't really paying attention to all the blessings that God is putting into my life. Yeah, so I got in the face on October 20th 2023, a little over a year ago with the diagnosis of something that I knew I had for about a year up until that point. So, or one of your symptoms, I finally got the word that you have ALS. So that was a punch in the mouth and it kind of opened my eyes and made me realize, like, what I've been missing, and that's a beautiful family that I've had in front of me and, uh, friends that I consider family, um, out here in California. And so you know, I can honestly say up until this point, I mean since being diagnosed, I have enjoyed life more than I ever have. Yeah, yeah, I get, I know the audience can't see Nice.
Johnny Rodriguez:This is Jeff.
Lorri Carey:Hello, he's going to take a nap. Okay, how old is he? High five, that's almost two years old. Wow, then you have another son.
Johnny Rodriguez:Cruz is five months old.
Lorri Carey:Oh, Cruz is a little one Okay.
Johnny Rodriguez:They are very similar to their names. So Cruz likes to chill, he's the chill master, and Jet is a menace and goes 100 miles an hour everywhere he goes.
Lorri Carey:Oh my gosh. Now I love the names Jet and and cruise. Are they named after an athlete or?
Johnny Rodriguez:they're not named after an athlete. That's why we named them. Okay, coach so much and we've coached so many kids that I never had a jet and I never had a cruise, and neither did she, and so we tried to find something unique that was uh, that was fun, that they would like, that they would enjoy, you know, from childhood all the way through adulthood. So Jet, joseph, jj, and then we have Cruz, christopher, cece. We didn't really have a lot of arguments over the names. We kind of both agreed to them.
Lorri Carey: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: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, much more decorated of a coach than I.
Johnny Rodriguez:Three national championships, three coach of the years to my zero. Yes, she's also a coach, much more decorated of a coach than I. Oh nice, Three national championships, three coach of the years to my zero. She also recently stepped down from being a head coach after finding out I was diagnosed Just because we wanted to spend more time with the family. And when you're a coach, when you're a really good head coach, you're spending more time with your kids than you are your family, and we understood that.
Lorri Carey:I got it. Yeah, my husband was a high school hockey coach Got it and he coached kids from mini-mites on up all the way through high school.
Johnny Rodriguez:I know the commitment in the time for sure A hobby is a big commitment in itself, and to be a coach, you got all that commitment and more.
Lorri Carey:Yeah, so you're going about your life, living life, a young family. And then what was the first thing that you thought of when you were given your diagnosis?
Johnny Rodriguez:Like, what was the first thing that came into your mind? Well, I was trying to find out where my pinched nerve was. I figured, you know, my muscles were. I was just not getting blood flow 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 the benefit of the doubt and I quickly pulled out my phone because I said that is, that's a deadly disease. I mean, that kills people pretty quickly. I knew that much of it and I Googled it and the first thing that came up and said it's a two to three years or two to four years like that, right on top of google. And man, that's when I just got. I was dizzy, I got confused, scared and like walking out of that. I we, I was in the doctor's office for the 15 minutes after that. I don't remember a single word. The doctor said after he told me I had ALS.
Johnny Rodriguez:It was emotional, as you can imagine, and I was by myself because, like I said, I didn't think anything of it. So I had to go home and I had to tell my wife. I had to tell my wife that I had ALS and that was for me that was. That was tough, because the night before we were literally talking about cruises, what cruises name was going to be. We're sitting at the table and jet's sitting there with us and he's throwing spaghetti and meatballs at us and thinking anything of it, because we're so used to it and I remember thinking like man, this is like I love this new life that we have, like it's so much different.
Johnny Rodriguez:It's a completely new chapter and I can't wait. I can't wait for more of this. And literally the next day I'm in the doctor's office finding out that you know there's no good news you have ALS. So it was that was tough, and having to tell her it was very difficult. In the next couple of weeks that endured were miserable.
Johnny Rodriguez:I wasn't just a rock right from the get-go. I was trying to pretend like a rock for everybody around me, but inside I was falling apart. I went to a church. I was a faith-driven person growing up, but then I grew up in a Catholic family but as adulthood happened and occurred, I was busy on the weekend. That was coaching, and I started losing connection with God and my faith. And so, you know, I finally stumbled into that church and, um, after a few weeks of of hell and misery and I came out with a huge weight off my shoulders. Uh, understood that. You know. I just I need to trust him.
Johnny Rodriguez:Proverbs 3, 5, and 6 is one of my favorites. It's trust the Lord with all your heart, don't rely on your own understanding. In all your ways, acknowledge him and he will direct your steps. You know, it's amazing that all I needed to do was go back into that church and cry for a few hours and come out of there with strength and a new focus and a new understanding that wasn't my own, that I didn't need to understand, and I just needed to trust that. You know, if I have this, it's for a reason, and my job is to find out what the reason is. And you know, he's prepared me throughout my life, through everything I've done, to compete, to be a competitor, and one thing sure as hell is I'm going to 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'm struggling or you know a new, there's a new weakness that I discover physically within my body, I just remind myself to focus on him and not focus on whatever that weakness is.
Lorri Carey:And, yeah, it really keeps me strong there are only certain things that you can control, and I think when you realize that you're not the driver in this life, then it's what do I do with it? You know?
Johnny Rodriguez:absolutely so that's one of the things like when, as an athlete, and all the athletes out there get it is, you know, when you go into a match 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 is out of our control, but what is out of control is to give it our all, 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:Absolutely. That's awesome. So one of the things that has been really reinforced from so many people that I've talked to on the podcast is the value of community, and I know you talk about leaving the east coast, going to the west coast, and I mean your lacrosse family, your school family and your friends there. Tell me what that community has done for you in the past year, like what difference have they made?
Johnny Rodriguez:my lacrosse community specifically yeah well, I, I was not a I've never been a handout guy, um, and this is just from the get-go and I'll get through it from each like the sport as a whole.
Johnny Rodriguez:But, um, a couple of people approached me.
Johnny Rodriguez:You know, with all this treatment, you should probably have a go fund me, and you know I've I've never been one to be comfortable with that.
Johnny Rodriguez:So the lacrosse community one of the big companies that I used to have a sponsorship from but also was close friends with, was, was a company called the east coast eyes, out of baltimore, and, um, they reached out to me and I said you know what? I'm not really interested in a gofundme. But you know, they said, whatever ways we can support, we want to let you know. They ended up communicating with my mother, reaching out to my mother and saying, hey, we want to do this for johnny is, are you okay with it? And so I had the GoFundMe set up and it was, uh, reposted by a bunch of people with the news that you know, I was diagnosed with ALS and that we needed some money for some treatment and some therapies that were to be in my near future. And it was incredible. I mean, it was repost, it was shared by so many different people and I think I had over a thousand donations within the first couple of weeks.
Lorri Carey:That's incredible.
Johnny Rodriguez:It was special and it kind of makes you feel, you know, because as a coach you're just, it's not about you, it's about everybody else and you know you kind of lose sight of you know, ever having people doing something for you, you're always doing something for other people. So when the lacrosse community came together, it wasn't just you know one company, it wasn't just one area of the country, it was, it was all over the country. It was people I compete with, people that you know, ex players that I've competed with. It was ex coaches that I've coached against um, players that have played for me, uh, players that have played with me. So it was just. It was great to see that you know, there's still even though I haven't talked to or spoken to so many people in so long, that people are really still concerned and I still have a place in their heart and that really that motivated and inspired me. So all the prayers that continue to come in and all the messages really helped lift me up in a time that was very dark.
Lorri Carey:I don't think that you realize the impact you know, as a coach, that you're having on your players. I mean, like I was talking about my husband being a hockey coach, I think he's had three, two or three hockey players come back and ask him to officiate their winning.
Johnny Rodriguez:Wow.
Lorri Carey:And then he had the goalie of our high school rival do the same, you know, and so I'm like that really tells you. You know, in the midst of throwing the clipboard and this and that and getting thrown out of the game, like it shows you what those kids are taking away and just like you're saying, with all the love and the support 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 community is my, my close community of, uh, my, the modern day lacrosse community, which is the school that I've been at coaching at for the last decade.
Johnny Rodriguez:Uh, certainly a powerhouse in in academics and athletics and one of the best schools in the country. In my opinion and you know, in a competitive world it's very cutthroat and there's usually not a lot of feel to it, and there's certainly a lot of feel to this community, a lot of honor, glory and love coming from modern day lacrosse. When I got diagnosed, I stepped down from being a head coach just prior to the diagnosis. Actually, I knew something was wrong with me, but I was so busy at the time I just never had time to really understand why I was experiencing the symptoms I was experiencing.
Lorri Carey:I mean if.
Johnny Rodriguez:I would have even had time to look it up. I probably would have found out that I had ALS a year prior to being diagnosed. So it was just I was needed and the school completely understood. I remember I first group to find out outside my family and my friends was my players. I, like before, like outside of my really close friends and my family, my players knew before anybody else. I brought them into a chapel and I explained what ALS was. I explained that I had it and I didn't know what my future looked like, I didn't know which direction I was going in, but that I was very grateful to be a part of this group and when I was with them it didn't feel like I had any diagnosis, it felt like I was living a normal life and that I wanted to continue or to that and still to this day.
Johnny Rodriguez: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 off my shoulders, but you still go through life. Like you know, I'm still trying to type on a keyboard and it takes me twice, three times as long to type as it used to because you know my fingers are hitting the buttons the wrong way, and so it's constantly in your mind. But when you're out there on the field, you know it's just you're.
Lorri Carey:Just you're where you're supposed to be at that very moment and it feels great.
Johnny Rodriguez:You know I love, like I said at the beginning, this game has given me so much throughout my last 20, 25 years playing it so many great 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 and it's just been a tool to create a stronger character within me and make me a better man I am.
Lorri Carey:So I want to, you know, leave that and inspire those kids to want more out of their lives and to feel like, when they graduate, they can do something to change the world for the better yeah, I, I love that, and you made me think of several people I've talked to have told me that all they really want in their community is to do the things that they've always done with that person before ALS, like come over, drink a beer, watch a game. You know whatever it is, but whatever you used to do is what you crave. You know, and I feel like that's exactly what you're getting when you're on the field with 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:That's right. Yeah, and it's a special feeling, yeah, even though we're usually out there right now it's the off season, so we're out there at like 6 AM, but even it's fun to get up. It's just to get out there with the boys and to see them wake up and to get into them and to understand, like you know, this is, this is uh, whatever challenges, and we want to constantly challenge them so they continue to find some growth and whether it's a game, it's on the field or off the field.
Lorri Carey:So, yeah, it's always been a joy in my life yeah, I heard you say life is so much bigger than lacrosse relative to what you want to teach your players, so I was just curious if you have seen anything come out of that already and maybe you've had a conversation with a player that is showing you that they're getting it like they're growing as a young man by watching you handle adversity in the way that you are.
Johnny Rodriguez:Yeah, I'm aware that you know, every time I I step on the field and I'm in front of those boys, they understand what I'm going through, or they, you know, they, they, they know what I'm dealing with. Um, so it's very important to me to understand, you know, there's I really have to go out there 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 face that's ready to get after it, ready to be focused and ready to have a good time. And I think it's not like it's a face I put on, it's just something that I understand.
Johnny Rodriguez:You know, if I can't walk out there at 6am looking like I'm tired being in the position I'm in, so you know it's it's an honor to do so and, like I said, life is so much bigger than the game of lacrosse and, as a coach, I wouldn't be doing this for as long as I've been doing it if I thought lacrosse was what all what it's all about. So it's just the tool that we use to, um, refine these guys and refine their character and, um, cultivate them into being the best people they can be at the high school level. That's why I never really was interested in a college coaching job was because high school you're still so formable that the foundation is still being built in high school, whereas in college it's kind of already built. You're kind of just tailoring it to a point. But I really like watching you know the development from the incoming freshman to the graduated senior.
Lorri Carey:And with you and Christina both being coaches, and it sounds like she's the head coach, not like she's the head coach in the house.
Johnny Rodriguez:I'm the one that spends all the time coaching. She's the one that wins all the awards.
Lorri Carey:Oh, there you go. But from your past history do you think that's helped you guys take this new time in life and figure out a game plan how to handle it, how to approach each day. You know, like structure and discipline.
Johnny Rodriguez:Yeah, you know, I think coaching is, uh, definitely something that has helped us. I mean, it's it's why I'm doing so well. I think is because of how well I'm taking care of my body right now. Um, and I think that came from a strategic approach, a game plan to compete. You know, just like we do, and when we prepare for, for games whether it's boys across or girls across, I mean, there's still we. We watch film, we create a scouting report, we understand what the opponent's weaknesses are, what, what are some, what our strengths are, what their strengths are.
Johnny Rodriguez:And same thing with disease how this disease can hurt you, how you know what you do with your activity, how you can leverage the disease and we don't want to leverage the disease and watch ourselves progress Right. So it's understanding both sides and coming up with something that you want to present this disease and say this is what, this is how I'm going to attack you and this is what we're going to do. And so I think, yeah, I think I think coaching played a big part of it. I think everything I've done has played a big part of it, even, you know, as a player competing. You know there's not a day that goes by that I don't that I just want to sit back, cause if I'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 doing something for three to four hours a day to compete with this thing, to put my body in the best position to heal.
Lorri Carey:Tell me about what you're doing right now as far as your regimen.
Johnny Rodriguez:Yep, yep. So the regimen it is I'll preface it Everybody's different, and do I know what specifically is working for me? No, and it's tough because I do so much, and so usually the day it starts or ends with an ice bath and a sauna. The ice bath really helps with inflammation I have a really stiff neck, so you know, my rotation of my neck is about as half as much as it would be after I get out of the ice bath and the sauna helps with inflammation too, and exotoxicity helps remove toxins from the body. I also use a device called the Tenet Biomodulator which I wear pretty much throughout the day. I wear electrode patches throughout the day to stimulate charge within the body, within the cells at a cellular level, so that my body can function at a higher rate. I can feel like I have more energy, and at night it's followed by an hour-long regimen that I do. That includes foot plates and hand electrodes and basically to help my body, the energy move through my body at a higher rate and a better revolution.
Johnny Rodriguez:So it's like our bodies are like batteries. If we are drained, there's a problem with our charge. We need to charge, and we don't just always get that charge through sleeping like I. I did a cellular test and I had a very, very scary low charge within myself. So it was at like I don't know what it was called the me test, and I was at like a percentage level, like a 7% or 8% of charge, where I was supposed to be at a 25% to 30% level of charge, and so once I started using that device, I felt like I had a lot more energy throughout the day. I use a Beamer mat, I sleep on a beamer mat and wake up to it. It comes with a few other attachments that I use for my neck and my lower back when things get sore, and that's a pulse electromagnetic frequency device. It's a medical device that I would recommend because it's so easy. I would recommend that to a lot of people. Because it's so easy. I would recommend that to a lot of people and that helps with blood circulation.
Johnny Rodriguez:I do a lot of body work. I stretch a lot. I do assisted stretching once or twice a week for an hour so that somebody's stretching me. Shout out stretch labs, and that's been very helpful and I always find like I'll get like one or two guys that I can work with repeatedly because they've learned my body. It's the same thing with massages. I get massages twice to do. Didn't even know now like I can feel like okay, after like two or three sessions this guy's starting to pick up on like what muscles are always tight and what problems I usually. So I like sticking with one guy as opposed to, you know, just going to a random massage place and getting who's ever available.
Lorri Carey:Yeah, yeah.
Johnny Rodriguez:The body works crucial that keeps me feeling good Cause, after about a week of no massage, I'm really like my shoulders start to turn in and um, I'm just like a, like a walking bandaid at that point. Um, I do meditation now and the meditation has helped with my vesiculations. I feel like I'm in a high stress environment or things are. I'm running too fast, I feel like things are. You know, my muscles start to pop a little bit more, and so the meditation has helped a lot. That's about 20 minutes every other day, sometimes every day.
Johnny Rodriguez:You know, in addition to the body work, I do cupping and scraping and things like that, but I also do qigong, which is the qi, which is the energy within the body, and I have a guy. He's. It's kind of like if, if I were to have a therapist, that'd be my therapist. He's the guy that comes in if I'm feeling, if I'm feeling a one percent sorry for myself that day, he's, he's going to kick me out of there and say come back when you're ready to talk to me. Um, he's, um, he's. Not only that, he'll work on me and he'll work with my chi and my energy levels.
Johnny Rodriguez:And I always come out of there feeling strong, like if I'm feeling weak, going in mentally weak even a little bit, I come out of there feeling like I'm feeling weak, going in mentally weak even a little bit. I come out of there feeling like I'm going to beat this thing every single time. Yeah, so that's, that's really cool. And I would have laughed at that a year or two ago. I was never into that, like believing that stuff but that would work, but it really has. I mean, it has really worked for me. So yeah.
Johnny Rodriguez:One of the two biggest things I think I really enjoy that I would be scared without would be a CVAC, which is it's a hypo-barric chamber. It goes up and down. I know you were talking to Aaron Lazar a little while ago. I asked him to come down and join me on one of those in Newport Beach.
Lorri Carey:Oh nice.
Johnny Rodriguez:But I'm in those twice a week. It's a pressurized chamber. It takes you up to like 30,000 feet what that pressure would feel like and then it'll just slam you right down to zero and it'll take you back up and down and up and down. So if you think of a empty water bottle, plastic water bottle, that thing's going to expand and contract as it goes up and down respectively. So that's what it's providing a cellular workout, and it's incredible. It's great for the mitochondria to really support those cells.
Johnny Rodriguez:And then the last thing I'll share is Skinar S-C-E-N-A-R. Daniel Palmer is my girl at Ascent. She's the specialist that works with that device on me and it's a nerve regeneration type of device. So and I know this one works, because I really struggled to drink from a water bottle and to even hold up a fork with my right hand. And when I before I started that and after about I'd say, six weeks to eight weeks, I started getting my muscle back. I started seeing muscle regrow, started being able to drink out of a water bottle and I couldn't even pick up my kid out of the crib.
Johnny Rodriguez:Then all of a sudden I can pick up a kid a year later that's almost two now and I can put him over my head onto my shoulders. So I saw, and so what that's doing is she's going into my neck, where my arm muscles were pretty much toast my forearm, my extensors, my brachioradialis they were pretty much non-existent, um, there was no muscle tone in them. And she would go into my neck and she'd hit certain nerves that would signal, that would blast signal into those muscles that would actually make them contract, you know, for my neck. And then after the six weeks or so, eight weeks, whatever that was, I started slowly feeling like oh, I can start, my handwriting is getting better, I can start, you know, I can drink out of a water bottle, I can eat with a fork. So much better now.
Johnny Rodriguez:That's been really good and I'd say that's one of my favorite therapies. And I know it's tough for the audience because not everybody has access to that. We've been, I've been talking to her and the people at Ascent and Advotation in Newport Beach. They're incredible people. It's led by Heather Henneker. They have just opened their hearts to this ALS community and they want to do more with it because they're seeing so many more ALS patients find out about these things. They're literally moving into a new facility in a couple days just so that they can keep all these things coming.
Lorri Carey:Somewhere. Yeah, that's great and, like you said, I would say that you never know exactly what's doing what, but hey, if it's working for you were. After you've been entertaining all these different forms of treatment.
Johnny Rodriguez:Are you noticing muscle loss, you know, at a slower rate or yeah, if I could give you know, some advice to people out there dealing with the same thing. I think mentally, when I was not doing great the first couple I'd say month and a half of having this disease. I mean, if I had to give some advice to the other ALS patients out there and I would love to do that because I have had a lot of success and I'm so grateful for it. I thank God for it every day and that's. I want to share it with people. I just want to always preface it with it's working for me and I can't promise it's working for everybody else. But some of the things that I would really recommend is mental fortitude is number one. We have to find some peace within this disease. You have to find the benefits of it. I mean, it's so wild to be like you have a terminal illness and the benefits of it. Like we have to realize that. You know, like I mentioned earlier, when I got punched in the mouth with this disease, I realized how beautiful of a life I had in front of me for the first time ever. We have to see those things and we can't think of the future. We can't set our minds Like I have a two-year-old, I have a five-month-old.
Johnny Rodriguez:When I was first diagnosed, I couldn't look at them without thinking are you going to remember your father? Are you going to remember me? And if so, are you going to remember me in a wheelchair? Are you going to remember having difficulties holding conversations with me? How like I would think of that. So I stopped thinking about that. Anytime my mind would go to that, I would change it to now, I'd change it to the present and I'd appreciate what the moment I had that I was sharing with at the 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 I started thinking about six months. So I am just very set. One thing that disease helps you with is like I am so good probably better than 99% of humans out there to be present to stop thinking about things ahead of time.
Johnny Rodriguez:So, without getting sidetracked here, live in the moment, be present. That'll help you stay strong mentally, count your blessings, tell people people you'll love them things. That is really. That is really helpful, because when I was negative, those first few months, those were my fastest months of progression, so I rapidly progressed. When I was depressed and emotional and angry and confused and pissed off, that's when I lost functionality in my right arm. Then I started getting better, then I started doing treatment, then I started attacking it and feeling like there's no mountain that I couldn't climb.
Johnny Rodriguez:That's when I started seeing muscle come back. That's when I started seeing mobility come back and functionality come back. So that is that's the one thing I would say is like we got to make sure that's dialed and there's other, there's ways to get help on that. You know there's there's people out there that specialize in that stuff and they're not hard to find. You just got to find them. And reading books I read a lot of books about the power of the mind and how strong the mind can be If you believe something, how things can actually turn into reality. So look at Dr Bedlock's reversals. That's when I first read that. I was like, oh, this is the other people have done this. Other people have progressed and gotten lost function and gotten it back. Yeah, I can be one of those people.
Lorri Carey: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 on here. He's on my list.
Johnny Rodriguez:That's a huge inspiration for, I think, anybody with this disease. Go check those out, check out the common themes. I did that right away and I ended up coming up with a list of supplements that I think is just perfect for what I need to be taking right now to help all different parts and functions of my body to be working at a higher rate. So there's a lot of hope to be had. We just have to keep our eyes open and find them. If we put our head down, we're never going to be able to find any of that.
Lorri Carey:Right, right, I love that and keep moving, however you can. I found for me. When I was first diagnosed remember that was over 20 years ago they said do not exercise. Do not exercise you, you're gonna burn motor neurons that eventually you'll need to walk, and it scared me, so I quit doing everything. And then, you know, I gained I'm a small person anyway and I gained 20 pounds from inactivity in a year and I felt terrible. And then, after a year, I was like I'm just going to go back and do my thing. If I'm holding onto the wall, if I'm, you know, making any kind of modification that I need to, I'm going to do what I want to do and, um, I think that's really helped me to stay active, physically and mentally for sure. So, okay, tell me about Athletes vs ALS.
Johnny Rodriguez:So Athletes vs ALS is a. It's a new foundation I started about six months ago. It's about community. You know, you kind of touched on it. People want to be a part of community and I don't want to attack this thing alone and I thought the best way to attack this thing would be with fierce competitors like myself. So what I want with the Athletes vs ALS is right now I want it to bea well-known cause to support in high school and collegiate sports and as a coach, we get a lot of opportunities to play for different causes and to show our kids you know what life is. You know, have a better understanding and a better perspective of life, and I think that's all part of it.
Johnny Rodriguez:So getting into colleges and high schools to have an ALS awareness game or ALS awareness night would be a great thing. To spread the word, spread some awareness about ALS awareness game or ALS awareness night would be a great thing. To spread the word, spread some awareness about ALS and raise some funds to devote to research. Also, little events like we just we're doing the cold plunge challenge right now. We partnered up with plunge and commemoration of the 10-year anniversary of the ice bucket challenge.
Johnny Rodriguez:Thought we'd put a little spin on it with the craze of ice ice plunges today, that you know that, yeah, that could be fun and people would want to support it and help out. So, yeah, we had that going on with little virtual races or 5ks that we can do. There's so many different things that we can do to kind of bring people together and support something. But so we wanted to do is wanted to create something that community could be involved themselves with, and not just from the outside but the inside as well. You know, if there's athletes out there that you know are suffering from ALS and want to get more involved, we'd love to hear from you.
Lorri Carey:Yeah, I love that. So it can be any sport, any level of team sport, any level of team, but them adopting als as the cause, that they want to do something as a team to support right? Yep, that's correct. I love that. Do you have a website that people can get in tune? Get more information about athletes versus als?
Johnny Rodriguez:yes, athletes, dash bs, dash alscom. Okay, search athletes versus als and you'll find us okay, perfect. And oh, and follow along on our social media, because that's where really all the updates come from is through our social media. Athletes per se okay, perfect.
Lorri Carey:And then are you encouraging them to benefit augie's quest?
Johnny Rodriguez:yeah. So augie's quest is uh, that's kind of how we got started. I always wanted to start my own. I'm an entrepreneur, I have a few different businesses and so when I was diagnosed I knew eventually I'd want to start my own. But I also knew that I had a lot of work in front of me and I didn't want to, didn't really feel like starting something right away and also with you know the longevity of this disease, it doesn't really last long. So I didn't have a lot of time to create momentum. So I wanted to attach myself to momentum and you know this is it's not something where one person succeeds, it's something where we all succeed. So I want to be in support of that. I spoke for at Augie's Quest one night in March and I felt a lot of synergy there with the people that were there. As a fitness event.
Johnny Rodriguez:I met a lot of great yeah and I said, you know I, there's some synergy here, can we keep working together? And it kind of made me realize, like you know, let's attach this to as much momentum as we can, because if, if one of us wins, we all win, and so I want to continue with the momentum they have. They've been doing this for 20 years now yeah, as long as you've been diagnosed. So athletes versus ALS is just a brother organization to their major foundation of Augie's Quest 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's Quest is we know exactly where that money is going. It's going to ALS TDI to fund a research facility that's making the advancements that we want to see be made.
Lorri Carey:Absolutely Both great organizations, great people. I've talked to Lynn and Anki on the podcast over the past four years and, yeah, so I'm glad that you're teamed up with them for sure, with them for sure. So what is something?
Johnny Rodriguez:that you want people to know that they might not know about als. So als is, it's something that slowly it kills the nerves, that communicates the muscles, which eventually cause paralysis throughout the entire body Right, and that eventually leads to the lungs, cuts your breathing and you know, once you eliminate breathing there's not much further to go from there. So one thing that is very interesting about this disease is there's so many different types of it, there's so many different onsets of it, there's so many different stages of progression, how it progresses, how quickly it progresses. I'm sitting here two years into mine and I progressed very quickly. We're to the point where I lost full control to almost no control of my right arm, my right hand in about three months. Then I get it back, then muscle grows back into my arm and now I'm seeing a small decline again.
Johnny Rodriguez:So there's really no way to really wrap your head around how this thing's going to go. So if you do have ALS, there's no point in trying to figure that out. You know God's the only one that knows the future and for us to speculate on that is just a strain to our mindsets. So don't speculate on it. Like I said, I went, I progressed quickly. I grew muscle back, which is very rare, um, to the point where my my bicep to my forearm was back to normal size, after seeing it to be just skin and bones. Um, now I'm progressing again, you know, and in the wrong direction, but I'm also very hopeful. I'm going to get it back in a couple weeks. So, um, I would just say, don't, don't worry about you know, don't try to anticipate or predict what kind of progression you have or how quickly it's going 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 to more progression.
Lorri Carey:Good, point, really good point. I have a lot of people obviously ask me what have you done that is intermittent to your longevity? And I'm like I cannot say you know? Uh, all I can say is I'm a sleep champion. When I sleep, I sleep, I'm up, I'm up, I move however I can, and I just think it's the path that's been chosen for me. So, all right, before I let you go, johnny, what are you dying to tell us?
Johnny Rodriguez:I'm dying to tell you and the entire ALS community and everybody listening that I just spent the last four days in Hawaii playing in a very competitive lacrosse tournament and I won and it wasn't a handout, I won the tournament MVP of the weekend.
Johnny Rodriguez:So oh nice it was a huge honor. I played for the first time in probably a couple years at that level and it was a lot of the guys I used to play with that I in the professional league and now we're all in our mid-30s and playing together again. It's very, very special to be on the field to play six games. I was the only goalie. There was no stepping off the field. I led the team in playing time. It was a very vigorous challenge for my body physically and I'm definitely feeling it, and I had treatment this weekend working extra hard. It was just such a surreal experience just to be told that you're you know by a doctor that you have a couple of years left to live. Try to enjoy it. And a year later, I'm enjoying it by still playing the game that I've always grown up loving to live. Try to enjoy it. And a year later, I'm enjoying it by still playing the game that I've always grown up loving to play with the guys that I really enjoy playing with.
Lorri Carey:So yeah, I bet congratulations, really really happy to hear that and I bet you'll hit the uh cold plunge one extra time this week oh, yeah, definitely yeah, oh, johnny, thank you so much for being here, for chatting today and for sharing your heart and your 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 the day every single day and just 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, for sharing your beautiful spirit and for everything that you are doing through Athletes vs ALS and for Augie's Quest and, in turn, supporting crucial ALS research. I know that's a lot just in itself. And then you add on being a husband and a father to two little boys and a varsity high school lacrosse coach that's a lot. Varsity high school lacrosse coach that's a lot. So just know that we see you and we really, really appreciate you.
Lorri Carey:Okay, I have a feeling a lot of you who are listening, if you are in the ALS community, that you might have a lot of questions for Johnny on the different treatments that he's doing. So in my show notes I will put a link that will include contact information for Johnny and just a quick reference, I know you can find him on Instagram at j3rod r-o-d. J3rod, and also athletes versus ALS both of those on Instagram. Okay, thank you so much for listening in. If you like this episode and you want to help bring other people to it, feel free to leave a review. Wherever you listen on Apple or Spotify, it really does help other people find this very special community. Hey, and if you're new here, you can find me pretty much everywhere on social media, all at I'm Dying to Tell you podcast. So Facebook, twitter, instagram, linkedin and even TikTok. Okay, until next time, know that you are loved and not alone. Thanks for listening.