Latest / The QuadCast / S7 E8 - Rise Through Resilience With Jen and Matt Hellstern
Transcript
- John McAleavey: And welcome to the quadcast Matt and Jen Helstern. Jen Hellstern: Thank you. Matt: Hi, John. Thanks for having us. John McAleavey: I tell you, this is my second group of folks that have been ⁓ suggestions from the great Tracy Iraca. I had a chance to meet Tracy way back when at Kessler, and she I told her you're gonna have to be my chief booker now because she set me up with Steve Zutti I spoke with a couple weeks back, ⁓ who's a wonderful guy, and now I have the Hellsterns joining me today. And so what I like to usually do with my shows is begin at the beginning. And so Matt, if you could, why don't you tell us ⁓ where did you grow up and and what were some things that you were interested in in your youth? Matt: So yeah, Matt Halstern. So ⁓ grew up in New Jersey in Scotch Plains. I have two sisters. My parents are still still with us. I went to school in Scotch Plains. And when I was younger, I had a group of friends that, you know, kind of still still know them to this day. Right. And we were, you know, people are friends that long. Right. We know too much. Right. So we keep other on our toes. Right. ⁓ John McAleavey: They know where all the bodies are buried, right, Matt? great. Well I grew up in in Milburn, Short Hills, so we're ⁓ we're neighbors. Yes. Matt: They do. Yeah, I used to work in Short Hills a deli, Zappia's Deli. ⁓ John McAleavey: ⁓ okay, yeah, we used to go over there. Absolutely. Okay. And how about Jen? How about yourself? Where did you grow up and and ⁓ what was your youth like? Matt: Yeah. Jen Hellstern: Sure. So I grew up actually in the town we now live in, which was much more rural at the time, ⁓ central New Jersey in Monroe. and have a sister and two wonderful I'm sure we'll chat about today. and I I was kind of a theater kid. I was I danced, I I did shows, ⁓ so that was kind of always what was really important to me as a kid. John McAleavey: Okay. Mm-hmm. How about Matt? Tell us, where did you go to college and what did you study? Matt: I went to Penn State University my undergrad and business logistics and international business. ⁓ And I was for a few years and then I went to school in the evenings for my master's of business at ⁓ Drexel. John McAleavey: You know, you mentioned Penn State. Were you at school when Adam Taliafero was there and was injured? Matt: Yeah, yeah, it was. was. Yeah. John McAleavey: Wow. I had him on ⁓ my first season and he's gone on to do remarkable things, speaking of spinal cord injuries, right? Matt: Absolutely. He was actually when we my first day I went to McGee outpatient, he happened to come in and stand right next to me and I looked down and I saw the Penn State tattoo on his ankle and I was like, no way. I was like, ⁓ my God, it's him. John McAleavey: Cheese. are, right? Isn't that your big thing? We are. ⁓ what a small world. My goodness how these things come together. ⁓ about take us through a day in the life of a pharmaceuticals operation executive? That's a real mouthful. Matt: is. Yeah, it is. Yeah, it is. mean, it's, it's, my job is, is, ⁓ I can make it sound simple, right? So, so, so my job is, ⁓ we want to make sure that, ⁓ our patients, right? We sell generic medicines. We want to make sure that patients are getting all, all the access to the medicines that they need. Right. And so when a person goes to a pharmacy to get their, their bottle of medicine or whatever it is, ⁓ there's an enormous amount of people and effort that go into making sure that that bottle or that container gets that medicine to them. and safe gets them there safely as well as reliably that they can count on their medicine. So that's part of my job is making sure that that medicine gets there safely and John McAleavey: Okay. And now how about ⁓ tell us, Jen, how did you and Matt meet and if you could please tell us about your family? Jen Hellstern: Sure. ⁓ so Matt and I met online. we were both working full time, ⁓ and in school at night. So we did not have a lot of free time. ⁓ that was pretty much our first ⁓ of years of dating was was study dates because we we didn't have we didn't have much much else ⁓ to talk about or or time so John McAleavey: Mm-hmm. ⁓ huh. Jen Hellstern: ⁓ Matt was in business school at night, ⁓ and I was in law school. ⁓ so we were very committed to our careers. You know, we met ⁓ in our late 20s, early 30s, so we were kind of established as professionals. ⁓ we got married a little bit later. and shortly thereafter two ⁓ lovely Hannah and Abby, who are now John McAleavey: Mm-hmm. Jen Hellstern: They just had birth forgive me, they were in the middle of birthday season. So one just turned eleven and the other's about to turn thirteen. ⁓ so ⁓ yes, so wish us luck. We're in about to have two girls in the high school. John McAleavey: Wow. I'm sure they keep you on your toes. Jen Hellstern: That they do, that they do. John McAleavey: ⁓ that's great. Well, that's a nice a nice family story. And how about Matt now if you could tell us ⁓ a little bit about the reason why we're here today to talk about not only your spinal cord injury but the great work that you are doing on of your foundation. So if you could take us through what brings us here today, how you were injured. Matt: Sure, sure. So I was injured back in May of 2021. So just recently had my five anniversary in a relatively minor car accident. ⁓ Someone rear-ended me and impact must have jarred something loose, broken off a of bone, a piece of cholesterol, something and it blocked something that was important apparently. Um, and, uh, so over, you know, the next 24, 36 hours, right. I wasn't, um, you know, it did the paralysis did not set in immediately, but it actually came 24, 36 hours later. Um, very unusual. Um, and, uh, so, yeah, so, so two days after the accident, I was paralyzed T 11 T 12, um, Asia C right. And so I have been. John McAleavey: Mm-hmm. Matt: working on coming back from that then, right? So we've spent a lot of time in the inpatient ⁓ Good in Philadelphia and then outpatient started at McGee and got matched with a great physical therapist and I've followed him around to all the places he's worked and now he runs his own clinic. So I still him ⁓ quite frequently, as as he'll take me, I go. John McAleavey: That's unbelievable. Did you initially did you feel any pain after the accident or was it just sort of an afterthought? Matt: I mean, we had the accident, I pulled into the parking lot next, you know, where I could safely. I got out, I checked the car, didn't have much of a mark on it. I asked the other guy, I said, are you okay? He said, he's fine. And I said, okay, let's just go, right? I was late for a meeting, right? So I had to get into work to get to a meeting. then, yeah, it was unbelievable. It's quite unlucky, if you believe in John McAleavey: Livable. Without without question. So and and Jen, when this was all happening, I mean, was your head spinning? I mean, how how were you dealing with all of this? Jen Hellstern: John, it was such a it was such a bizarre onset that it there was no critical phone call, right? There wasn't a moment where we knew this happened. If he didn't tell me about the accident until dinner that night. He said, ⁓ I got rear ended on the way to work. But it didn't mat it was inconsequential until two days later. ⁓ you know, he woke up the next day, he ran five miles, he always did. ⁓ and then he called from work two days later and said, I have this terrible pain and I'm having trouble walking. And he drove home, which we now like now knowing what we know now, ⁓ that probably was not the best decision. But it just it just goes to show how it really took a long time for us to ⁓ realize that this was permanent. it really we we ⁓ John McAleavey: Not the f yeah. Jen Hellstern: it was at least a week of him being admitted before I believed that he was actually paralyzed, ⁓ because it it didn't make sense for something so minor, ⁓ or seem seemingly minor. the the emotional I think didn't come until much later, ⁓ to understand I mean we always joke back, we tried to rent a ramp for our home because we thought this was just temporary. Like we we ⁓ didn't but ⁓ John McAleavey: Yeah, yeah. Yeah. Jen Hellstern: So I think the processing for us was very delayed. John McAleavey: And speaking of processing, how did your daughters process all of this? Jen Hellstern: ⁓ you know, they're resilient. Everyone will say children are resilient. everybody took it ⁓ their own way, you know, or older Started getting migraines. Our youngest became very attached to things, things that she could hang on to. ⁓ And I remember her saying, I don't care if daddy can't walk, I just want him to come home. But this was also COVID, right? So the kids couldn't go see, they weren't allowed to go see him. They wouldn't let any children. We had to be outside if they went to visit him, which just only amped up the ⁓ the unknowns, because not only do we not John McAleavey: Yeah. ⁓ right. Jen Hellstern: not really understand what's happening, but we can't even go see him. John McAleavey: gosh, yeah. I had some friends. I work at Kessler Institute twice a week and one of my friends from high school, her son, ⁓ unfortunately was injured in a bicycling accident and he was admitted ⁓ like day ⁓ after world shut down with with COVID and they couldn't as you said, they had to like stand outside of his window. They they physically didn't go in there for the for the three months that he was an inpatient. And this was a sixteen year old kid. I mean his head was spinning and so Matt, what was that like? I mean, did you as patients, you know, form like a bond when you were in the therapy room together and that was become like your family de facto? Matt: No, were separate, right? I had a physical therapist and occupational therapist that were selected to be paired with me, similar age, right? So that was kind of like the people who helped me process, right? ⁓ But I ⁓ if you've been through inpatient, ⁓ there's so much on. Quite honestly, I didn't understand why I was there, right? I thought I was there to get better. ⁓ John McAleavey: Yeah. Mm-hmm. Matt: That's not why you're there, right? You're there to get safe and get yourself ready to go home, right? ⁓ ⁓ was a lot to process, of course. And then, ⁓ Jen said, still thinking this ⁓ days, weeks, ⁓ maybe a couple months that this is gonna happen and then I'll be fine, right? But ⁓ yeah. ⁓ John McAleavey: Right. Why am I here? Yeah. I it's I just visited with a patient ⁓ within the last six weeks or so that walked in for elective surgery and he's not walking anymore that something happened and they say, ⁓ it's gonna be, you know, you should y you know, do a quick stand at Kessler or wherever you want to rehab and everything's gonna be okay and he's like, Yeah, that was a month ago and now I'm on this third month and you know there's there's no telling when when you When you f affect your spinal cord, it's it's something and I I don't know about you. I didn't really know anything about spinal cords really, other than stuff that I slept through in high school that I dunno But until you find out, you know, you you really don't know until you know, we like to say. And so, ⁓ well, know these these injuries take so much from us physically, but ⁓ what a lot of people don't know is how they affect how affect us, you know, not only the patient but the family mentally and So ⁓ Matt, how did you process this? You're you're laying in the bed in the rehab and you know, what's sort of going through your head? Matt: you know, a lot, right? I'm sure ⁓ there's a lot going through your head. There's a lot of, lot adjusting, a lot of unpleasantness, ⁓ say least about what you're going through and having to, ⁓ having to to, you know, a little, a little of what we explained before, a little bit of ignorance, right? Probably helped me, right? Because it was, ⁓ you know, it's just a matter of time until ⁓ till I get better, right? There's no other outcome than getting better that I would accept. But yeah, there's certainly some hard times there. Jen has been fantastic through this whole thing. My sisters have been wonderful. Family's been wonderful, right? So lot of people holding you up at the beginning there trying to, oh, we're all trying to get our of erbil feet under us, right? And understand what's going on. So yeah, you know, definitely indebted to all the friends and family who helped through the early part ⁓ and sure that I didn't, know, when the fork in the road came that I didn't go the wrong direction. John McAleavey: Right, right. So, you know, Jen, I can definitely what Matt's talking about as someone who was in the bed myself and you know, I I remember when I was in the hospital ⁓ there was a whole bunch of people in the hallway waiting to come in or, ⁓ you know, to visit and my parents were out there, my sister and just ⁓ the support behind the scenes and you know, maybe you could tell us a little bit about what it's like. ⁓ on sort of the outside looking in and I know it's different because of COVID, but what other than the initial shock of, ⁓ my goodness gracious and we hope that this is gonna go away shortly, what what is starting to are things like back at the ranch, the proverbial ranch, if you will? Jen Hellstern: think trying to not let the balls drop, right? ⁓ Matt and I both our our jobs were really important to us. ⁓ and that was something that I Matt took I don't know, maybe he took a week off in the hospital, ⁓ but he continued to work. and we were very lucky to have employers who let us figure it out. ⁓ so we were able to stay employed. ⁓ John McAleavey: Mm-hmm. Jen Hellstern: I was trying to see Matt every day. was trying to get kids to and from school or camp. are they in remote school still probably? Yeah. so we rely so heavily still five years later on on my mom, ⁓ who lives very close. and ⁓ I we have done it without her. ⁓ I still go to PT with Matt when I can because I always say it's it's therapy for the whole family. ⁓ I I learn about the injury, I feel like I can see ⁓ Change or I can und understand more and it just gets honestly, if if I didn't go to PT with Matt, I don't know when we would really get to see each other. ⁓ so mom allows that to happen. Matt has had to travel for work ⁓ and I've needed to go with him. ⁓ he's traveled for clinical trials. John McAleavey: Right. Jen Hellstern: And all of those things we've been able to do because ⁓ of many things, but one of them is having the support ⁓ to help help with the girls and wanting them, you know, it's it it's impossible to not feel torn. I think probably most working parents feel that. but with an like this, ⁓ you really torn between can I be there for my spouse and can I be there for my kids? ⁓ John McAleavey: Mm-hmm. Jen Hellstern: Which isn't a choice anyone wants to make. but it was we were able to, ⁓ yeah. John McAleavey: It takes a village, right? The old s the old axiom. It really does. It ⁓ it takes so many people to ⁓ to pitch in and reading in your bio, Matt, I know that you had your journeys included periods of significant process ⁓ progress, and then frustrating plateaus, a constant willingness to explore new therapies, technologies, clinical trials and rehabilitation approaches. So if you could ⁓ take us through how you Jen Hellstern: Mm-hmm. John McAleavey: navigate the the highs and and then you know you think like I can tell you some days I wake up and ⁓ my gosh I feel like I'm the old me and then I'll go to bed and can't wait to get up the next morning and it's like, ⁓ God, I can't even hardly get out of bed today. So I know that those are frustrating for me. I'm sure you've hit some of those walls. Take us through a little bit of the highs and lows if you could. Matt: Yeah, I mean, so, you know, so many of the highs and lows, right? Really the highs, I gotta thank Jen again, like so many of the highs, you know, she's been behind it, right, with finding the clinical studies or pushing me to do something that I'm hesitant on or just being one step ahead, like she's always there, right? So I put in four clinical trials right now. You know, one of the... And we participate in the clinical trials not expecting a cure or that promised progress, right? We do it for the science. believe in the science. We that we're ⁓ into something that progresses ⁓ a cure. But ⁓ something that ⁓ me or helped me so much was ⁓ trial with the C-brace, which is the... the Autobot product that is the knee ankle foot orthotic with the microprocessor in the knee. And that was something that ⁓ had huge right? That really helped me get on my feet, right? Like, ⁓ know, it's you know, my one leg, you know, the strength hasn't returned to my legs evenly, right? So the one leg, my left leg is a little bit behind the right leg. And so that really me get my feet, really helped me. ⁓ John McAleavey: Mm-hmm. Matt: like feel what it was like to be back up and put weight through my body again. That was certainly something that was great. You know, we've tried lots of other stuff. know, the other trials have all involved ⁓ hypoxia, right? So breathing the low oxygen air and then going into a high intensity physical therapy session. We've seen some returns there. The most recent one that I did was, I'm still finishing it actually, right? And, you know, we've seen, you know, you know, the science behind it, actually what caused the change or what caused the improvement is obviously yet to be confirmed. But I've seen my own improvements, ⁓ 25 % improvement in my walking distance during six by six minute walk. ⁓ Two second improvement in my 10 meter walk, right? So I've seen some changes recently, right? Which is, you know, the reason we keep five years out, we're still seeing the things that John McAleavey: Mm-hmm. Matt: that you want to see, right? The improvements, right? we'll try, you know, try almost anything, right? As long you know, we get the doctors sign off, we get the PT sign off. If they say it's good, ⁓ we give it a go. John McAleavey: Mm-hmm. You know, it's one of those you'll throw as much you know what at the wall to see what sticks, right? How do you find out about these ⁓ these clinical trials? Jen, is that something that you're doing some research and looking around? Matt: Yes. Jen Hellstern: Absolutely. were we were lucky. Matt was independent very quickly. ⁓ so he did not need support from me in the way of a traditional caretaker. ⁓ which is good. but also it's very a very helpless feeling, this injury, right? To to not know what to do, ⁓ and not know how to help. And my training is as an advocate. I'm a lawyer. ⁓ so that is what I knew how to do. and so ⁓ when things were not going well, I would jump on clinicaltrials.gov or I would cold call random biopharma companies ⁓ or faculty at League institutions to see what kind of research that they're doing. ⁓ and this is, you know, you got bounced from person to person, but I will tell you, John, almost everybody writes you back because most people do this work because they were impacted in some way. You know, so, you know, one of the principal investigators at Spaulding where I'm at ⁓ is doing one trial, his dad had a spinal injury so there's there's always a personal connection for that this is how I've coped call it ⁓ I would say an obsession at some point like it it's it's the only I know how to help ⁓ is to help find what's the next thing ⁓ so maybe it's you know looking at John McAleavey: Mm-hmm. Jen Hellstern: MS medication and and that's helped in gate training and have they done research in in the SCI world. But it's such an underdeveloped area. You know, there's only so many people with spinal cord injury, there's only so much funding. so ⁓ and Matt has always said every one percent helps ⁓ and that's a big that's always guided me. That it doesn't have to be a cure, but if it helps a little bit, it can help him get to the next step. ⁓ and he always John McAleavey: Mm-hmm. can I can tell you things have have changed over the ⁓ I'm coming up this August nineteen will be my thirty-fourth anniversary in or as they they call it up at our place, injuroversary. I don't know if you've heard that one before, Matt. ⁓ you back in the early nineties, I mean there was really no no clamoring any spinal cord injury stuff. And then ⁓ soon after injury Dennis Byrd on the Jets was injured in a football game. Matt: No, not yet. John McAleavey: then er ⁓ course Eric Legrand. I don't know if you've had a chance to meet Eric in your travels around New Jersey, but he has become sort of the face of the the the Christopher and Dana Reeve Foundation. And then of course Reeve. And then ⁓ you know, talk about that become synonymous with certain things. I remember when Magic Johnson was first diagnosed with HIV, ⁓ he became the of that. And of course, money poured in from all over the globe to help. you know, with magic and and to help that fight that cause. And for for us in the in the SCI world it sort of became the same thing when when Chris was injured. ⁓ know, when we lost him, ⁓ lost a lot of the momentum that was that was happening. I know that ⁓ foundation is still going strong, but the face of it ⁓ is gone. and so like you said, ha looking around and finding people really know much about spinal cord injury. I I somebody had recently sent me a a photo ⁓ it's an iceberg and what you see at the top of the iceberg sticking out of the water, it's a little tiny piece ⁓ it says loss of movement. ⁓ then ⁓ that, under the water, you see like 20 different things from blood pressure issue, bowel issue, bladder issue, skin, f and falls and ⁓ mind things and just so like all these different things that nobody knows anything about. ⁓ a and so, you know, we we like to joke that these SCIs are the are the gift that keeps on giving, because it's all it's always something and it's ⁓ something that that people really don't know much about. I I actually had another of my friends was on a recent episode and he's one of the main doctors at at Kessler ⁓ in the research department and he ⁓ is he's in a power chair and he a a UTI one day. And he lives in the city and it got really bad to the point where he kinda didn't know where he was, sort of a thing. I mean, you can get UTIs where you're you're you lose, you know, who any sense of what's going on and so he kinda got lost in the New York hospital system and when he was there they didn't know what to do with him. He he wound he was in the hospital there for for ten days and he left with like a stage four decubitus. He had a a a he had a s So that's these people don't know anything or what to do with with folks with spinal cord injury. And so that's me getting up on my soapbox for the last two minutes. But ⁓ Matt, if you could when at these ⁓ trials, tell me, you are you there alone? Do you do you travel to these things? Are they day trips or how how does that sort of work? Matt: ⁓ no, I, all in, right? So I relocate. So I've in Chicago for about two maybe seven weeks doing hypoxia study. I was in Boston, I was just there for ⁓ there for six weeks. Right. So, yeah, when mean, ⁓ but the Boston one was fantastic. Chicago is fantastic, but Boston extra fantastic because they had apartment that they let you stay at, right? So you didn't have to pay to be there, which really, really huge. So was really nice apartment close enough to the location. And it's just that ⁓ extra to come and do the trial. So, but then you're there ⁓ every doing the trial. John McAleavey: Wow. And so you're solo. Yeah. Good. Well so then you can you can care for yourself and, you know, shower and get dressed and all of all of that stuff. ⁓ that's good. Matt: I'm solo, yeah, yeah. Yeah, I mean, the apartment accessible, right? So it is designed for someone with mobility but yeah. ⁓ John McAleavey: You're good from the waist up, right? Your arms, hands, fingers, all of that stuff. Okay. Okay. Well that's good to know. And and so you've you're making the rounds, you've been to Chicago, now you're into Boston. It's like you're taking vacations. And Jen, do you get a chance to to to sneak away and and spend some time with Matt? Matt: Yes. Yes. Jen Hellstern: Yeah, typically ⁓ the girls and I will make make a point to visit either ⁓ you know, it it kinda depends on what stage of recovery was met at. so yeah, we I mean, gosh, you were at Chicago in the dead dead of winter. It was like negative thirty seventy degrees. It was awful. ⁓ John McAleavey: Oof. Jen Hellstern: But we love Chicago and they they've they've had some fabulous presented some fabulous opportunities. ⁓ and Boston, same, you know, we'll go up and spend time. ⁓ you know, this is where we lean on lots of folks, right? We we we let the girls' schools know, hey, this is ⁓ is important. ⁓ this is critical medical care. ⁓ and they might have to miss school and I might need to miss work, but we have prioritized recovery as is a goal for our family, ⁓ because it John McAleavey: Yeah. Mm-hmm. Jen Hellstern: Matt gets better, ⁓ but it makes the quality of life for all of us better. ⁓ every small improvement can improve the quality of life for all of us. So we've always said, you know, this is this is your job is recovery, but it really, it really is an injury to the whole family. John McAleavey: No doubt, no doubt. And where are you coming from today, Matt? Matt: the basement of my house. John McAleavey: ⁓ okay. So you're home. You're not in a trial right now. Matt: No, no, no. So now I finished the trial weeks ago, three weeks ago, right. But now I'm in like the assessments afterwards. So I go back this Friday and I back again in July. John McAleavey: Mm-hmm. And one thing that I read in in info that you sent over to me, which I think is it's great thing, ⁓ is you mention how you mu the these trials that you're doing may not necessarily benefit you ⁓ in here and now, but but they can help down the road ⁓ for folks that come after us that that will unfortunately endure spinal cord injury. ⁓ And always ⁓ tell some of my doctors, I say, you know, I I kind of think that Maybe I was born about a hundred to a hundred and fifty years too soon, you know, before they really have stuff that's gonna, you know, affect like, hey, you go in and we could do this and, you know, you'll be you'll be all better again. But I think that's really admirable and it that that's part of of why you do these things, right? For for for the folks that come behind us? Matt: Absolutely. And ⁓ the sea brace that I mentioned, right? I don't know if my study was directly part of this, but ⁓ that brace is a rather expensive piece of equipment. after that study completed, either Medicaid or Medicare, I forget which is which, started paying for them, right? So it was... They were trying to prove that the device was not an end state device, it was a therapeutic device. ⁓ So hopefully we were a part of that, right? Because then, you know, help the next, like you said, the next set of folks who need to work their way through this. John McAleavey: Mm-hmm. Sure, sure. I read here that in July of twenty twenty four you transitioned away from being a full time wheelchair user. How did that feel? I mean and and all the effort that you put in and then and then from the outside looking in, Jen, I want you to to follow up with just not only how amazing it was, but how proud of Matt, all the work that he had put in to to make that leap. Matt: Yeah, so yeah, so just about three full years after my injury, I stopped using the wheelchair. ⁓ have not used it since. It was a big transition, right? It was one that was, I'd say, it was partly about walking was more about freedom, right? It was about being able to get back to more of the things that we we used to do. Um, you know, just a little bit easier to get to places. Uh, at least it looks like that on the surface, right? The anxiety inside of me while doing this was a different story, right? Of course it's a big change and you're used to a certain amount of stability and security in that wheelchair, right? And when you're up out of it, um, and you have what feels like nothing to protect you, it's a little bit, uh, unnerving, but, um, but my family was always with me, right? And so, I knew I would be fine. yeah, it was more about the freedom. was important to me, it's important to the family. it was ⁓ a huge accomplishment for me, but for Jen, for my PT, for our families, right? All the work that had put in, all the time that they put in, like it was huge change that could see, right? And they knew that it was ⁓ something that they were a part of. So very important to the whole family, I think. John McAleavey: Yeah. Jen, how about you? Your your thoughts. Jen Hellstern: it it Amazing, right? To not to not have to break down a wheelchair, to not worry about it when we're traveling, all those things. Amazing. ⁓ But it's it's it's so much more than that, John. Like there's and and we have we celebrate everything, like every little improvement because if we waited you said I d I've lost track of time. Two you said July twenty four. we waited until then to see a see improvement and many many folks do, right? Because you y the goal I want to walk again, right? That that's what we all w wanted to know. But if you wait till then it it's it it recovery is so slow. You can't you can't that's not enough to keep you sustained. ⁓ so really it was the it's been so many hundreds of moments before that of the first time he could, you John McAleavey: Right. Jen Hellstern: pull himself up to grab something from an upper upper cabinet. ⁓ the first time he could drive, the first time he could take the girls to ice without me. so many so many things which are not small because the quality of life improvements are tremendous. and the is phenomenal. We our family our our favorite thing to do is to travel. ⁓ we lived overseas. We we love to travel internationally. And when Matt was hurt, that was I mean, I I remember in the hospital saying, what are we gonna do? How how do we how do we navigate this? ⁓ and we we did. ⁓ we did it with a wheelchair. it's not the same. It's it's much harder. ⁓ and it's so much more anxiety. ⁓ so doing that without my wheelchair is tremendous. It doesn't mean it's easy. I mean it walking is not easy for Matt, ⁓ even still and he continues to make improvements. But ⁓ you know, it's it's John McAleavey: Right. Jen Hellstern: It's you've gotta celebrate the little things, I think though, because the wheelchair was a big one that everyone can see, but i for us it was kind of like, Okay, that's the next thing. but John McAleavey: You know, it's I'm hearing your story and I'm sort of going in reverse for for twenty I'd say twenty-nine or thirty of my ⁓ in this in this game, I walked without any issues and well not without any I mean you could tell that there was something wrong with me, but I would come and go as I pleased and and now twenty-four has morphed into fifty-eight ⁓ and I'm starting to get old man issues. I have my back is an issue, I've got ⁓ old football injuries with my knees that are that are bothering bothering me. So I now out in the community and when I go to work, I've started using a rollator. ⁓ being a C34 central cord syndrome, I don't know if you guys know much about what central cord is, it it's upper body that that doesn't work. So ⁓ I they told me to think of myself as an upside down para that you'll walk but you'll have limit ⁓ little no use of your uppers and I really don't. So for me now to to have to break down a rollator and try and lift it. I really can't do this. So now, you know, going places, it's a heck of a lot harder because I gotta, you know, s you know, walk around to the s back of the car, which is not easy, and then open the back and try to get this thing out. So it's kind of like I'm navigating navigating a whole world in a in a different way now. But ⁓ such is life as they say and and time waits for no one. So we we just if you want to keep going, you gotta keep doing moving along with what you have. And so ⁓ I know one constant that we've talked about for these thirty-five minutes or so has been, you know, the relationship and and what great partners and teammates you are. and Matt, if you could, I know ⁓ don't mean to put you on the spot here, but if you could sort of sing praises of your of your wife here. I mean, I know ⁓ Jen been everybody needs an advocate and the fact that you have such a great one, ⁓ y so lucky in that respect. Matt: I am absolutely the most lucky. I think my older sister kind of, I watch a lot of sports. I'm a big sports guy. think my older sister said it best. She said, you know what? If we were drafting, I would pick Jen number one overall. She's the one that you want. She's so kind, so thoughtful. perseveres through anything and she is... John McAleavey: Mm-hmm. Matt: absolutely tenacious, right? Whatever she wants, watch out if you're in her way. ⁓ ⁓ know, she means everything to me, right? She's meant everything to this recovery. Without her, don't know I'd I don't have the words to describe everything about her that she does for me and this family and everyone else in the world. Like, there's not, you know, ⁓ there isn't another person's that comes across John McAleavey: Yeah. Matt: her desk or her phone that she doesn't stop and think about and try to figure out how she can help the person who's mentioned in whatever their challenge for the day is. So just absolutely amazing. I her. ⁓ I'm the luckiest person. John McAleavey: ⁓ that's so nice. It's you everybody needs that and you are so lucky to ⁓ to have Jen in your life and ⁓ it reminds me of the old movie A Few Good Men with Jack Nicholson where towards the end of the movie he says, You want me on that wall, you need me on that wall and it sounds like you have ⁓ the right person on that wall, not only for you, but ⁓ your daughters and and and friends and family, and so that's that's amazing because a lot of people don't have that. Matt: Thank John McAleavey: I can recall when I was an inpatient there was a a gentleman who was injured in an ⁓ motorcycle accident and he was a high quad. he wasn't gonna walk and he could breathe but he he wasn't gonna walk and he had gotten married probably about six months prior to that and his came to visit him and ⁓ just lost She couldn't deal with it and ⁓ within a of weeks was gone, she left and she couldn't handle it. So this poor guy not only lost You know, his mobility and all of that, but he had lost his partner and I I don't know how people navigate through something like that. But not only are great spouses and friends, huge in our recoveries, but also having great doctors and therapists ⁓ in our back pocket are are really big to have. And I know you have a special relationship with Doctor Chris Carroll. Why don't you tell us about him and ⁓ how has sort of shaped part of your recovery? Matt: Yeah, yeah, yeah. I mean, he's like, you know, he's right behind Jen, right, in terms of the people who have just been there the whole time. And it's more than just, I guess, being a great therapist. It's being a great therapist, right, who's also willing to spend the thousands of hours it takes to work on recovery and to never stop believing, right, the whole time through. So. He's been, you know, know, know, a critical part of this, a huge part of this. He's a friend of the family now. He's not it's not even like he's just a physical therapist, right? He's you know, he's like Uncle Chris, right? You know, the girls know him, they look up to him. They come to therapy and see him. He goofs around with them, right? He's just, you know, his family is like becoming a part of our family. And so, you know, forever indebted to him. As much as he tries to change jobs and get away from me, I John McAleavey: Mm-hmm. Matt: I'll follow him anywhere, right? So he's been wonderful and he's great to me. And like I said, he's wonderful to my family as John McAleavey: Yeah. You you gotta tell him he's like a piece of gum stuck to the bottom of your shoe. He's not going anywhere. that's true, that's true. That's great. And so tell us now, rise through resilience. Amazing. Where did the idea for the foundation come from and what is the main mission? Matt: Yeah, like the gum on his shoe, I think, but that's all right. ⁓ Jen Hellstern: You want me to start? Matt: Yeah, go ahead. John McAleavey: Sure, whoever, you could ⁓ you could both say a little something about it. I wanna hear more. Jen Hellstern: Yeah, so talked about how much ⁓ and energy we've both put in differently to recovery, right? And we know that this is what is required to pursue recovery from ⁓ a chronic injury or a life life altering injury like like you both have had. And we've seen along the way ⁓ is what what you know, we were all told six months, one year, two years, that's that's pretty much where your recovery is gonna stop. ⁓ and that dates were terrifying for us. but we've also found that they weren't true. and we kind of ignorance or not, we refuse to believe them, ⁓ because we we felt like that that factored in all the folks who didn't have access. ⁓ and we think what dries up really at six months and a year is is jobs ⁓ is insurance is the ability to afford paying out of pocket for PT because twenty sessions a year is is not enough for to recover from a spinal recover from. To continue your recovery journey from a spinal cord injury. And the equipment that isn't covered is often unattainable from folks who don't have access. ⁓ along our journey, we have seen so many folks who had the same passion and the same ⁓ ⁓ maybe opportunity based on the injury ⁓ to make more strides toward recovery. But what they didn't have was access. And to us that was unfair that for folks to be denied access truly because they didn't have enough money to pay for it, seemed inequitable. ⁓ we a foundation because we believe the more people who can see a Chris Carroll, the more people that can make recover greater strides in their recovery. So what we are doing now is we are helping folks fund continued neuro ⁓ with providers after insurance ⁓ cuts out. ⁓ we're helping fund equipment that is ⁓ re I don't want to say required, but will help promote independence and recovery. ⁓ and we're doing that through independent fundraising, working with ⁓ medical device companies, biocar pharma companies ⁓ who all have a vested interest in the SCI community to try and can bridge that gap between what insurance is covering right now and what we know is medically necessary to promote recovery. John McAleavey: That's amazing. Matt, how about your two cents on all of this? Matt: Yeah, I mean, I think she summed it up wonderfully. think I think Rise Through Resilience kind of came to came to exist. It does exist because because I was fortunate. Right. I have have the family support. I have the insurance. ⁓ have the access. I have I have the resources and we the resources. Right. And so we see that year two, year three, year four, year five that we're still having recovery. Right. ⁓ And want to make sure that that others are afforded that. if those resources run out, we want to be there to try and help them out. ⁓ John McAleavey: How can my listeners find out more about the the foundation and some of the opportunities that may exist? Jen Hellstern: So check out our website, ⁓ our Instagram, our Facebook, all rise through resilience dot com, ⁓ or The comparable handles ⁓ on social media sites. we are hosting small community fundraisers right now. ⁓ trying to make sure that as much of the donor funds that are as possible are getting directly ⁓ fueled, funded towards individuals ⁓ are looking to pursue their recovery. We started ⁓ the end of January and we have since funded seven people to continue their recovery. And we are hoping we we can't wait to see how many more we can. It's really a passion project for us. John McAleavey: How fulfilling is that to to see folks that are benefiting from from your foundation? Matt: It's wonderful, right? It's a very emotional process, right? go through their story and to hear what they've gone through, but then, you know, ⁓ excited they are to get back to therapy or to have this support. The are emotional, they're overwhelming. It's an emotional roller coaster, ⁓ but is fulfilling and we wanna keep getting after it. Yes. ⁓ John McAleavey: Paying it forward, right? It's amazing paying it forward. Matt, one one of the ⁓ Jen mentioned about your website before, and I urge people to go on the website ⁓ to to learn more about the foundation. But what I found really inspiring is the video that features you and it's sort of like the the butterfly, you know, ⁓ through the metamorphosis and where you ⁓ start at one point and you see like all of your Jen Hellstern: Absolutely. John McAleavey: trials and tribulations in like a three or four minute video span. And so when you look back at that a and you see all the progress that you've made, ⁓ if you were to to talk to a newly injured person about, you know, what they're up against and and what you've been through, what what would you sort of tell somebody to write out of the gates? Matt: I would tell them to ⁓ put a timeline on their recovery, right? I would tell them to ⁓ in the present, but working on progress and know you can get better and work hard to get better. And getting better doesn't need to be walking, it just needs to be the goals that you have, right? So, yeah, it's really important folks don't get too ⁓ caught. Obviously the injury and everything is but, but ⁓ and with your family and friends ⁓ and the support that you have to, to put a plan together to get better. ⁓ John McAleavey: I hear somebody else wants to chime in in the background. No worries. I have a I have a six year old canine companions for independent service dog here with me and he's at my feet here and he's being a good boy. If he would have heard the barking he probably would have chimed in also. ⁓ the more the merrier, as we said, it takes a village, right? Matt: Yeah. Absolutely. John McAleavey: And what's his name or her name? Jen Hellstern: ⁓ that's Odie. ⁓ and it does but honestly Matt Matt and the girls are such dog people. I love our dogs, but I'm not as crazy as they are. ⁓ but we brought you know, it was COVID. We brought the dog to the hospital to see Matt because of how you know how mu attached they both are to each other. John McAleavey: Okay. Mm-hmm. Of course. Of course. They're so important. I know Tracy, we spoke about ⁓ Tracy Iraqa at the beginning and the ⁓ dog meant everything to her. So I told her, When you leave, ⁓ you get home, you gotta take a video. And her husband took a video. Kevin sent it up and it was the most amazing thing that dog I thought the tail the dog's tail was gonna fall off. She was wagging so hard. You know, they miss us. They miss their their loved ones and so that's all part of it. Matt: Holy. John McAleavey: So I know we're gonna wrap up here, but I I have one last question. I usually ask all of my guests who've been injured. and it's an in an interesting story. It it comes about I was waiting for a doctor's appointment with a friend of mine, believe it or not, a high school friend of mine had a ⁓ similar to mine. He had a ⁓ a pretty severe spinal cord injury. So the two of us were waiting in the hallway ⁓ to our doctors and I just leaned over and said, Hey Tommy If I could snap my fingers right now and you would be completely able bodied again, what do you think the first thing you would do would be? And so while I looked over at him and the smoke was pouring out of his ears, trying to come up with an answer, there was a woman seated behind me and I didn't even realize I had spoken so loud. She said, I would go in my garden and and plant some flowers and a guy next to me said, I'd go out in the garage and tinker with the cars that I used to love to do and so There weren't podcasts back then, but I said, geez, if I ever have something like that, it'd be a pretty cool question because I'm sure everybody would have a different answer. But if you do, Matt, or if if I could and you ⁓ were, what what do you think the first thing you would do would be if you were once ⁓ a wholly intact? Matt: ⁓ so I think back to the first couple of weeks when, when I, when I was injured and, ⁓ we was talking to Jen and, and I, and I said, you know, d we, you know, don't worry, this will all be over soon. Right. And, and, know, when we're old and gray and walking down the boardwalk, we'll look back and go, God, that was crazy. Right. I'd like to complete that. I'd like to take her for a walk on the boardwalk and say, wow, that was crazy. John McAleavey: Mm-hmm. Jen Hellstern: Very very New Jersey. John McAleavey: Yeah, like Twilight Zone, right? Twilight Zone. Well, Jen and Matt Hellstern, I appreciate your time today. ⁓ I'm glad that we were able to come together and again a tip of the hat to to Tracy Iraca for putting us together, ⁓ being able to he not only hear your story but to share it with my listeners. ⁓ they will not only be inspired, ⁓ but they will hopefully want to hop on Matt: Yeah. John McAleavey: the internet and check out the Rise Through Resilience Foundation. and hopefully we'll wanna donate some money towards the cause and some folks that that are in need of help to get back to doing some more therapy can take advantage of that. And so thank you so much, not only for what you do for yourself and your family, but for the for the SCI community. It means a whole lot, I can tell you that. Matt: Thank you, John. We really appreciate it. Thank Jen Hellstern: Thank you. Thanks for having us, John.