Latest / The QuadCast / 3 Men & A SCI Featuring Dr. Trevor Dyson-Hudson
Transcript
- John McAleavey: Hello welcome. I'm John McAlevey. And at this point, I usually introduce my co-hosts, Barry Monroe and Sasha Rabchevsky, and tell you that this is the Three Men and an SCI podcast. And that between us, we have about 110 or 115 years ⁓ in spinal cord injured world. But today I feel as if we're adding the fourth beetle to the program. ⁓ We're to call ourselves Four Men and an SCI because We're thrilled to have the esteemed Dr. Trevor Dyson Hudson join us today. Dr. Trevor has been a good friend of mine for a number of years now, and he has a wealth of information and knowledge that he wanted to come on and share with a couple of old hands. so, Trevor, welcome to the show, and why don't you tell us a little bit about yourself? Trevor Dyson-Hudson: Thanks so much, John. I'm really honored to be here with you, Barry and Sasha. And I guess that makes me Ringo, huh? So I try to keep the beat, so to speak. So yeah, so my name's Trevor Dyson Hudson. I'm director of the Center for Spinal Cord Injury Research, which is at Kessler Foundation in West Orange, New Jersey. I'm also co-director of our NIDILRR funded Spinal Cord Injury Model System of Care. John McAleavey: Yes, you are. Sasha Rabchevsky: Yeah Trevor Dyson-Hudson: And that's perhaps one of the things I'm most proud of because of my own lived experience with spinal cord injuries since 1992. So it's going on 34 years and how much I benefited from at that time being cared for by a spinal cord injury model system and how they've helped me over the years to keep doing what I do. John McAleavey: Sure, sure. And so again, welcome. And we really look forward to your insights into today's discussion. And speaking of which, we've kind of kicked around a whole bunch of different ideas and we have some really good things that we're going to tee up. And I figure, why don't we get started? I'll hand ⁓ the baton off to Sasha and he's going to take us into our first segment. Sasha Rabchevsky: Thank you. It's good to see you gentlemen, be on the air with you. ⁓ I think that for those who are listening for the first time, what we're going to do is we've all shared, as I've alluded to, lot of time on Earth in chairs with paralysis. And so we're going to stem from stemming from our collective experiences in the medical field ⁓ and recent hospitalizations that show clear evidence. There's an alarming lack of knowledge of spinal cord injury related secondary complications among physicians and other medical professionals. ⁓ Now full stop. Hopefully people are listening. This is dangerous. Now John McAleavey: Hmm. Sasha Rabchevsky: I don't wanna come across as a curmudgeon or old person that's trying to scare the youth. What is dangerous about this is that these conditions that we're talking about are secondary complications that are often not recognized or even anticipated that doctors, even spinal cord injury specialists sometimes are not prepared to yield or to do it. this is, yes, it is an alarm sounding ⁓ coming from us. But quite frankly, we're a little scared ourselves. So just about the way the land now with regard to length of rehabilitation and how short a time we have. then once you're released, then what? And so having said that, I thought maybe that's exactly why Trevor has been invited with us because he can perhaps share some of his recent events that have happened as well as I can certainly and Barry and John also can share with me. to get your perspectives Trevor on some of the things that you face challenged in the medical system and some things that doctors don't really know that we thought we did, that we did, that we did. Trevor Dyson-Hudson: Sure, sure, sure. So thanks, Sasha. No, I mean, I think, you know, so I will say, you know, I consider myself fortunate in that over, you know, for the most part of over the last 30 years, I've been relatively healthy. My biggest challenge has been battling pressure injuries. You know, that's an ongoing thing, but I've been trying to nip them in the bud earlier. It all changed about two years ago. ⁓ John McAleavey: you Trevor Dyson-Hudson: And so with this experience, know, I really, you know, this experience and just what I can share with others from it. So at that time, know, spring of 2024, so I was battling a UTI and at the time I was drinking lots of water. However, I was getting sicker and sicker. And after a few days, it was clear that I was in trouble. So I finally gave in, you know, and unfortunately, and called 911 early in the morning hours. you do it so you know there's a cautionary tale don't wait until you know be proactive if you're feeling sick you know act act accordingly so the trouble was at that point John McAleavey: Hmm. Trevor Dyson-Hudson: I was very confused. couldn't even remember simple things. I remember calling 911, giving them the wrong address. was using like my addresses, combining them. you know, by the time they got there, they were obviously very frustrated with me. So that's not a good way to start. I couldn't remember my emergency contact numbers. Couldn't remember my meds, you know, so I have all these backup meds. So they're like looking and it's like, is it this one? Is it this one? John McAleavey: ⁓ wow. Thanks. Trevor Dyson-Hudson: So, you know, they took me to the nearby hospital and emergency department here in New York City, you know, and so in my mind, you know, in the past, I'd, you know, I was always counting on myself to advocate, to communicate, you know, I'm a physician, so I'm part of the tribe, I can speak the language. And so, you know, I can communicate and, but what happens when you can't do that for yourself? And even with my girlfriend, it was very scary for her because I told her I was going, called 911 and then she never heard from me again for like a day. So she was of course scared, because I disappeared into the system. John McAleavey: Cheers. Mmm. Trevor Dyson-Hudson: you know, I was, you know, so I was in the emergency department, you know, they diagnosed me with a urinary tract infection. They also noticed I had really low sodium, so that was contributing to the confusion. ⁓ and probably because I was drinking a lot of water, all these things contributing it to it. so, and then, but they also diagnosed me with, you at that time, acute kidney injury. So, you know, they were focused on treating me and the emergent things, but they didn't take into account my spinal cord injury. So, you know, at that time I'm on baclofen, high dose baclofen, and because of my kidney issues, they stopped the Baclofen, cold turkey. So for anybody, know, that's something you're not supposed to do with Baclofen. It's supposed to be preferred. So, you know, um... John McAleavey: Ugh. Sasha Rabchevsky: Wow. John McAleavey: Ugh. Trevor Dyson-Hudson: Luckily for me, I mean at first I was improving, I was feeling good, because I had enough Baclofen in my system to kind of hold me over as I was improving. But then slowly I started acting a little weird. I'd be having conversations with my girlfriend and just suddenly out of the blue, paranoid thoughts, I'm going to be arrested. Just these really, you know, and there's something called Baclofen delirium or withdrawal delirium. John McAleavey: Wow! Trevor Dyson-Hudson: experiencing that and so yeah so I was experiencing that delirium which then made it even more challenging to care for me because I became combative they had to restrain me so I'm in bad restraint Barry: I don't even know that. John McAleavey: Jeez. Mm. Trevor, can I interrupt you for one second? Were you aware that they were weaning, that you weren't getting the baclofen? Trevor Dyson-Hudson: I did not know, no. just, you know, so I, because I was in and out. ⁓ and yeah, but you know, I had some very, I even, you know, I work at Kessler, so I have some very knowledgeable people. So, I mean, thanks to Dr. Kershbaum, he was able to track what hospital I was admitted to. So, you know, cause the warnings went out, you know, and so, you know, ⁓ John McAleavey: Okay. Of course. Sasha Rabchevsky: Yeah, you can't track all that. ⁓ Trevor Dyson-Hudson: A colleague at work reached out to Dr. Kirschblum. made calls to try to find me. HIPAA prevented them from acknowledging it. But when they said, we can't comment to that, it kind of narrowed it down to where I might be. But when he came, they were very hesitant to even listen to him. John McAleavey: Good grief. Sasha Rabchevsky: Yeah. Trevor Dyson-Hudson: and because he wasn't my primary doctor and they're like who are you and i mean anybody in the spinal cord world will i mean all you need to do is google dr kirschbaum and yeah mean one of the leading authorities in the world John McAleavey: Yeah. The godfather of spinal cord injury research. Yeah. Trevor Dyson-Hudson: And I had Mary Shay, who's an amazing occupational therapist advocating for me too, for my skin and all of these things. know, they, you know, I was combative, I wasn't moving. you know, I started developing a problem. So I was there for 15 days, you know, 15 days that I don't remember. My skin was getting worse and worse. They didn't have me on any type of protection. John McAleavey: Mmm. Trevor Dyson-Hudson: ⁓ You know because I'm not moving you know ⁓ Start secretions are starting to build up. So I'm going into kind of acute respiratory failure, you know, so all these things and you don't think about it at the time. I mean, I was completely out of it, but you know, for an SCA and at that time their approach was, well, he has a chronic spinal cord injury. We will, why would we reach out to rehab? That's for acute injuries. John McAleavey: Mmm. Sasha Rabchevsky: Really? Trevor Dyson-Hudson: but they were contacting urology, they were contacting infectious disease. So they're consulting with all these other services to address my needs, but they're not reaching out to spinal cord injury medicine or physiatry to address my spinal cord injury needs. And if I had come in with a history of multiple heart attacks, high blood pressure on all these medications, John McAleavey: Wow. Trevor Dyson-Hudson: you know, that I would for sure be, you know, they'd be consulting cardiology. So, you know, I don't know why they should use the same approach for people with spinal cord injury because... You know, what went from, you know, I mean, I had hyponatremia, I had ⁓ UTI, by the time at the end of my 15 day hospital stay, I had a stage four pressure injury and I was on oxygen, doing nebulizer treatments, all of these things to address my acute respiratory illness, the failure and... you know, they were talking about transferring me to a nursing home or some sort of subacute. And, you know, they were, can't transfer them to Kessler. That's only for newly injured people. And, you know, and thank goodness I had, you know, people advocating for me saying that's absolutely not true. Submit the paperwork. We will arrange it. You know, up until... up until that day and into the evening, I wasn't sure I was going to go to Kessler. ⁓ But finally I was, I was transferred to Kessler. And thankfully I went then to a place where people knew what to do. And it was amazing, you know, and even in my mind, you know, as simple with the... John McAleavey: Thanks. Trevor Dyson-Hudson: the cough and the respiratory secretions. A simple quad cough could have done wonders for me, stepping up and giving me an assisted cough. There's something called a cough assist machine or a cough plater that can help people with spinal cord injury cough. So, you know, just some of the simple things that a clinician knowing, well, this is a person with spinal cord injury. They have difficulty clearing secretions. We have to be creative. John McAleavey: Right. you Mm-hmm. Trevor Dyson-Hudson: helping them clear their secretions with assistance, whether that be assisted cough, a cough-alator, you know, not just letting me sit there and slapping a mask on me and hoping for the best, right? And then... again the pressure injury which was so which went from 15 day hospital stay. I then was at Kessler for three months as I won. know I remember very vividly Dr. Kirschblum you know I I've been giving talks to the residents and the medical students about you know spinal cord injury and you know patients with spinal cord injury and just remembering vividly the challenges during the acute rehab and I felt like I was back there. I was back at point. know, pressure when I sat up, you know. For that first week at Kessler I was being pushed around in a chair, thin space chair, know, in case I started passing out, building up enough strength to finally get back into my manual chair, which just seemed like, oh my god. And even just like Sasha Rabchevsky: Yeah. John McAleavey: Yeah. Yeah, well- Trevor Dyson-Hudson: being seen by a neuropsychologist scared the crap out of me. It's like, oh my God, my brain will yell Swiss cheese. John McAleavey: Yeah. Yeah. Well, I have to tell you, as someone who works in the building, I get a readout of the census and who's around. And oftentimes we've had a couple of people who are well known and they come in and they have like a surname. We give them like a fake name. And when I saw Trevor Dyson Hudson, I thought, who picked that one out? You know, who's the movie star that picked that one out? And then Trevor Dyson-Hudson: you John McAleavey: I went down to the room with my sidekick, Yoken, and wow, was an eye-opener for me. And I did not know the entire story, Trevor. Wow, that is quite a tale. So it sounds as if you went in because of a UTI and you came out with a really bad pressure wound ⁓ and you went from soup to nuts while you were there with all other ⁓ ancillary issues. Trevor Dyson-Hudson: Yeah, I mean really altered mental status. some epic, I have a greater respect for mental illness and periods of psychosis because I was living some very vivid weird dreams and the paranoia that came with that of people who I knew or loved. mean, fearing, you know, that my girlfriend was, you know, dead or on the run because the various hours had taken over the government and people John McAleavey: Wow. Wow. And it all had to do with the Baclofen? Trevor Dyson-Hudson: Yeah, I think a combination, I suspect it was the baclofen because you know, hyponatremia can cause some, you know, the low blood sodium can cause some some some delirium and things like that, but Sasha Rabchevsky: Yeah. You your action potentials. Trevor Dyson-Hudson: Yeah, exactly. need that. Yeah, sodium is a good thing for brain activity. But I was starting to improve and feel more human. They were treating the hyponatremia. It just, I started to improve and then I started crashing. And ⁓ it kind of happened during a phone call. John McAleavey: Yeah. That's unbelievable. Wow. Trevor Dyson-Hudson: my girlfriend and she I mean even to the point that she took my phone away you know but I was so convinced these things had happened that even my friend Mary she came to just to convince me she came to my apartment to look at my car I thought I had killed somebody with my car Sasha Rabchevsky: Mm. John McAleavey: ⁓ my goodness gracious. Trevor Dyson-Hudson: those signs, no signs of any damage or anything. It was just these weird dreams that I was so convinced. But it just speaks to, you know, delirium and, you know, so, but, you know, and just the support, but I had incredible support, but still, they still had to advocate. John McAleavey: Yeah. Sasha Rabchevsky: Well, think that's an important point though. I think that's an important point is that you came out the other side, right? And I've told my tales of my own recent experiences. And I think that's the epiphany for us is that we got through it, but does everybody go through this? Like, and who doesn't make it out? I've lost three friends this year, contemporaries, know, and one quad and two paras. And they all in the hospital. Trevor Dyson-Hudson: Yeah. Yeah. Sasha Rabchevsky: you know, for a shoulder replacement surgery or things like that. it is, And so. Trevor Dyson-Hudson: I think that we really have to be careful because if somebody with spinal cord injury, so you go into the emergency room, you have a urinary emergency department, you have a bad urinary tract infection, you get admitted, the thing is you're now confined into a bed, right? You're not mobile, you're not doing these things. And we are so borderline. John McAleavey: Thank Thanks. Trevor Dyson-Hudson: when it comes to things like respiratory illnesses. just coming down with the flu or something like that can put you at risk for pneumonia. So by being confined to bed, by not being with people who are thinking, how could this guy has an impaired cough? ⁓ What can we do to help him clear the secretions? ⁓ I mean, it was amazing. ⁓ John McAleavey: Yeah. Sasha Rabchevsky: Night. John McAleavey: Yeah. Sasha Rabchevsky: So Trevor, we've been discussing something for a while, Barry and I, and we've introduced John to the concept of a code ER, spinal cord ER, code spinal cord or something called SCI. Because again, it's not that we don't have the capacity, it's just that they've not been conditioned to it. They haven't been trained to do it. ⁓ And that's, don't know, Barry, you want to pick it up here? You've been kind of quiet up there, North. Barry: Well, always, yeah, call me, I'm North. By the way, it's a hundred and something degrees here today. We're almost, yeah, we're happy. ⁓ I was thinking about one of the things that has been troubling me a lot, and it's around what you were saying, Trevor, is the inability to communicate when we really need to, because we're pretty good advocates, like this, can handle it. And if we need something, we'll also push for it. John McAleavey: Hehehehe Sasha Rabchevsky: Also, other teams. John McAleavey: ⁓ wow. Barry: But the second that's impaired, like it happened with you, we're in trouble because they don't know what to do. And if you're not even with somebody who's a hard, died in the world guardian, they won't know what to say. so, and I use examples of, there was a guy up here. He was a pioneer in independent living with ventilator quads. he just, it was a place called nucleus. Nucleus was a, first independent home in Toronto and then in the nucleus too. The guy was, I can't forget his name, but he was just something else. The CC1, C2 quad, he did so much. because I can't say his name, that's okay. So what happened was he ended up getting a bowel obstruction, okay? Got severe AD, goes to the hospital, he can't speak, he's stroking, he can't say what he needs to do, he dies. John McAleavey: Right. Ugh. Barry: And if someone just, and we have a rule here, if it's AD, chances are it's pee or poo, right? It's one of the two that you got to go to first to check it all out. And there was an example, but I want to use, I might've talked about this before, guys, and maybe I didn't, because I talk about a lot, was the story of a gentleman, an older fella in Montreal, or a suburb of Montreal, chronic spinal cord injury quad, went in with pneumonia, okay, to a tertiary hospital. And there was a backup. He was in a gurney for a few days, not even in his own room. And his partner kept on saying he needs to be turned. He didn't turn, ends up getting ⁓ a category four ⁓ pressure ulcer, gets sepsis. ⁓ And so he's going through all that, he's still there. And then yet another unfortunate thing is in Canada, we have a program called MADE. And it's really, it's an acronym for assisted suicide, medical assisted suicide. And he opted for it. John McAleavey: ⁓ grid grave. Barry: Here's a guy going in with pneumonia to a hospital and ends up choosing, which is more or less what could have happened to you, Trevor, even if you didn't have a choice, where the hospital itself, the place you're going to that's supposed to help us is the worst thing you could possibly do in the way this thing played out. I'm just thinking. And then the one thing I know in Canada is that the cycle for a medical ⁓ training for medical doctors Trevor Dyson-Hudson: Yeah. Yeah. Barry: It's six hours they get of spinal cord injury. And how many years of education? So six hours. So somewhere back in the confines of the mind, they got to go back and find what do I know? And I use an example. As you guys know, when we go in for something, we have to go to an ER because I can't transfer into a urgent care facility or a walk-in or anything like that. I always get it. I go in with some symptoms. I'm dysreflexic. Something's wrong. Sasha Rabchevsky: Six hours. Wow. Wow. ⁓ Barry: Turns out I had a broken rib, example, right? And I'm trying to explain it to the doctor and I said, you know what AD is? And explained, don't know what that just reflects, yeah. Oh yeah. And then it's like, you start walking through, you might want to explain that again. Yeah, okay, let's go through it again. But again, I'm communicating, I'm talking, I'm advocating, I'm not letting them push me back. What if we don't have a voice? And that kills me. John McAleavey: Right. Yeah. Sasha Rabchevsky: Right. If you don't have a voice guys, I bear you hit the nail on the head for me and I can say this down because I survived, but I was in alone. took, went into the ER with a damn two sacks full of shit because I didn't know what I had to take. Right. I didn't get out for nine days. I didn't get out of the hallway for four. Like, ⁓ and again, take the time up to all these tubes and right. John McAleavey: Cheers. Sasha Rabchevsky: And again, they're not treating you as a neurogenic person. They're treating you as an invalid. Almost, honest with you, I shared a story of a friend of mine, Charlene, out in the West. They actually treat you like indigent sometimes. They don't. First thing, what's going on here? Do you have a place? You can't get out of your chair, the way. You can't get out to alleviate your pressure or whatever. You have to stay. until you're going through the whole thing. Well, that could take, you know, hours, not sometimes. And what do they do? A lot of the times, unfortunately, it's attrition. They wait to just leave. Like, what is that? Like a very, but that's the same thing you're saying. You go in and you're damned. You're damned if you do it and you're damned if you don't. John McAleavey: Right. Right. Barry: Yeah. ⁓ John McAleavey: What's amazing about all of this is that, knock on wood, I don't have any horror stories and I hope not to have any, but it's not as if, you know, you three gentlemen are, don't have, we talked about in the beginning, almost a hundred and some odd years of being injured and being in the fight and being in the arena. You guys know what you need and what your bodies need and Trevor's a doctor and Sasha Rabchevsky: Yeah John McAleavey: Sasha, you're a professor and Barry, you're, you're, you're, you're a brilliant guy as well. And, and, and if, what about like, like my neighbor who might have a spinal cord injury that's just, you know, a 20 year old kid that was surfing and that doesn't know, and the mother that doesn't know. they, they had a, a four week stay at a rehab hospital. And now all of a sudden, how do they advocate for themselves? I mean, do they just disappear into the system? What's the alternative for someone like that? It's scary hearing these stories. Barry: Yeah. Sasha Rabchevsky: their lives have completely changed. ⁓ Yeah, it is. It is. Trevor Dyson-Hudson: I mean, all we can do is try to advocate and educate and advocate, right? And just keep raising awareness. ⁓ You know, I think something was, Sasha, you brought up, I mean, it's the perception, right, of worth. And you look at somebody with spinal cord injury and an outsider might be, wow, you know, what is, you know, there's a judgment, right? This is not a young person. This person with paralysis. Sasha Rabchevsky: Yeah. John McAleavey: Right. Trevor Dyson-Hudson: life is that. I mean it's the same look elderly people get. I remember when my dad was in the hospital and had heart surgery, you know, and he went in this vibrant guy and he came out looking like death warmed over. And just how the people treated him was so different, right? And so just think it's, you know, unfortunately sometimes people put worth on on patients, right? Sasha Rabchevsky: Right. Sure. Yeah. Well, I can tell you, I've already said this in public, so I'll say it again. When I was in the hospital, I first had to go through colostomy and things of this nature for decubitus, ⁓ stage four, like yourself, lots of things. But when I then was diagnosed with pancreatic cancer tumors, and when I went into the oncology, it was like going from, I think I've quoted this thing as truck stop in the past, like a truck stop to like a nice hotel. because everybody's greeted because it's a cancer condition. You're kind of sad, there's a lot of money in it. Wound care? Are you kidding me? Wound care is the bottom of the barrel. Like the nurses are all complaining and they're like, and you wish that you could like write down everything you're saying and then somehow help them help nobody. I mean, it's you're, cut off, you know, kind of like that's the interesting thing. It goes back to what we're talking about. The continuum of care, right? Trevor Dyson-Hudson: Yeah John McAleavey: Right. Yeah. Sasha Rabchevsky: Wound care is a lot, somehow it's treated like we'll see you next week. Yes, there's time, but is there things you can do between it? By the way, you just won't be lying around watching TV for a week. what? Like what? You all just, I don't know. There's no plan anymore. And it's a shame. really is. Trevor Dyson-Hudson: See you. John McAleavey: Right. Yeah, yeah. Like you said before, Sasha, about, you know, the three of us had been kicking around the idea of how to sort of educate, ⁓ you know, folks. I was almost thinking like we could call it CSI SCI, you know, like something like that. if we could go around the horn, you know, if you could each maybe pinpoint at least one thing that if you could get into the emergency room and and tell either the attending physicians there or the nurses or whoever's in there, like what are the top few things that they should be looking for or that they should know when someone like one of the four of us winds up in one of their gurneys? Barry: I want to jump on that one right away. It's autonomic dysreflexia. It's understanding that because that's that's kind of all encompassing. This is what we should be looking for if someone can't communicate it. I know why I'm bringing that up is that there's been ⁓ praxis, for example, in Canada put together a chart that they want to have in every ER that explains it. know Chris, you have a card, I think that goes in your wallet potentially. ⁓ Sasha Rabchevsky: Mm-hmm. Barry: I'm experimenting or talking to somebody up here with the AI, with the sorry, a tech company that we're thinking, think of a something in a smartwatch or, and or a medical alert that could have it and they could scan and have your whole medical history there. I mean, we can, but my point is 80, I think it's the one thing they need to have something to say, okay, something's going on. Here's an example. want to give this an example. Sasha, you've heard the story from our friend who has a son. John McAleavey: Yeah, yeah. Yeah. Barry: who had to go to the ER. His son was getting dysreflexic. He was going through some AD, put it off, put it off, something was wrong. He went to the hospital. At the end of the day, his father, who has an experience around his discarding as well, around the hospital, came there and realized they were about to treat him for potential heart attack, because he was spiking. He had a clogged catheter. You can see where this could go. Somebody that would know at least enough to say, you gotta check these things first, and then that could really sit down. John McAleavey: Right. Yeah. Barry, if you could, for some folks that may not know what AD is, can you just sort of in a nutshell tell us what it is and how it manifests itself and what are some of the incidences that cause all of us to ⁓ unfortunately go into it? Sasha Rabchevsky: Yeah, it's. Barry: You want the lay version? that's all I'll give you. Autonomic dysreflexion. I always say it's our body's way of, you're dealing with your sympathetic and unsympathetic nervous system, but your body's way of telling you something's wrong where you don't have that neurological connection of feeling. For example, pain. Any type of pain, your blood pressure will spike and you'll turn into some sweats. If it's severe enough, you could stroke. John McAleavey: Yeah, give me the Reader's Digest. Sasha Rabchevsky: course. That's our audience. Barry: And I always say, so if you've got a burn going on, good old UTI does it. A twisted bowel will do it, bowel obstruction will do it. Pressure ulcer is a big one. That it's telling your body is something wrong and then you kind of work it backwards. You know what I can't stand is when you get it, you can't figure what it is. That makes me nuts. John McAleavey: Yeah. Yeah. Trevor Dyson-Hudson: Yeah, and it could be simple. Sasha Rabchevsky: Yeah. Well, John, John, to be, to get more technical, just to throw a little bit of spice onto this, the autonomic dysreflexia causes blood pressure spikes for sure. But what defines autonomic dysreflexia is a concurrent bradycardia. So your blood pressure, while it's spiking, your blood pressure blocks, you'd be your heart rate reflexively. This is a normal response, drops. But in a spinal cord injury, your brain doesn't tell your spinal cord to chill out. Everything's fine. John McAleavey: Right. Sasha Rabchevsky: So what happens is your blood pressure remains high, okay? But your heart rate keeps going lower and that's when you can stroke out because that's when you lose the pressure. Anyway, that's the dysphoric feeling also of autonomic dysreflexia is that you know, I call it my danger, Robinson. That was back in the 60s. Yeah. John McAleavey: Yeah. Trevor Dyson-Hudson: And ⁓ it's seen in people with injuries above T6 because that's, you know, the parasympathetic and sympathetic ganglia are located there. So with higher level injuries, as Sasha saying, it's kind of a fight or flight response. Your body is saying something's wrong. So what if you know, so your blood pressure goes up. Barry: Yeah, danger, danger. Trevor Dyson-Hudson: And it doesn't need to be pain. could be some people can have it during sex. It can be, you know, just a strong sensation and it could be subtle signs of sweating, things like that. But yeah, it's your your your fight or flight system just kind of kicks in and doesn't counteract it like it would if in somebody who has an injury below T6 because they have mechanisms in place to dissipate that blood pressure buildup. Sasha Rabchevsky: Yes right, non-noxure stimulus can also do. ⁓ John McAleavey: Mm-hmm. Right. Trevor Dyson-Hudson: or somebody who's able-bodied. John McAleavey: Right. Right. How about you, Trevor? ⁓ Barry hit on AD. What would be one thing? And you, you know, you just told us about your experience. What is something, I guess, maybe the deprivation of the medication that they were depriving you? Trevor Dyson-Hudson: Yeah. Well, I mean, it's so, there's so many, so I guess I could be prepared. Yeah, no, so I would just say, you know, be prepared. Sasha Rabchevsky: Yeah. John McAleavey: Hit on a few of them, yeah, knock them out. Trevor Dyson-Hudson: You know, I look at my phone and I see there are apps there. You know, in fact, ⁓ you know, I mentioned my friend, you know, after this incident, she was going through with me and just showing me how to enter information into this thing. So on my, I use an iPhone and so I can enter all kinds of medical information in there, you know, prone to ⁓ autonomic dysreflexia, know, medications, all these things, emergency contacts. other contacts so just yeah yeah there's a I think it's one of the emergency apps and in fact you know it's one of those things you can access without having the passcode to your phone will even be you can even you can even share like if you call dispatch there's a you know ahead of time right because in my brain I wouldn't have been in a position to agree or disagree Sasha Rabchevsky: This is an app that you have at the... ⁓ John McAleavey: Wow. Barry: ⁓ that's good. John McAleavey: Right. Trevor Dyson-Hudson: when you call the 911 dispatch, it shares that information with them. Now, I don't know what they have in place at their end, but the things are in place to share all of this medical information with the dispatch, with the paramedics, with the emergency room. And I guess the thing, I truly appreciate educating ER docs and all that. Sasha Rabchevsky: No. Trevor Dyson-Hudson: but they're dealing with so many things. guess I would just, don't be afraid to reach out to your spinal cord colleagues. You know, look, I got somebody with a spinal cord injury. You know, what do I need to consider? Just like, know, if you were, as I go back to the cardiologist example or the infectious disease example. John McAleavey: Right. Trevor Dyson-Hudson: an emergency department doc would be, got to get cardiology consult down here. ⁓ Because this guy, you know, is on all these blood pressure medications and I'm it's I don't know how to handle these. So, you know, whereas with spinal cord injury, they don't give it a second thought. So you know, think, you know, think about your, your rehab colleagues, and just reach out to them, because it may be Sasha Rabchevsky: Mm-hmm. Mm-hmm. John McAleavey: Right. Trevor Dyson-Hudson: It's great to raise awareness and that's the other thing we're trying to do on a physician organizational level, reach out to primary care doctors to raise awareness. But in the interim, just raise awareness about reaching out for consultation. John McAleavey: How about you, Sasha? Do you have some, I'm sure you've got some ideas rolling around in your brain about maybe how we can put neon lights around these situations. Sasha Rabchevsky: Yeah, that's a great question as far as how do we heighten our awareness. But going back to the original question, which I'll first floor is that I think also another thing that they're painfully unaware of is the fact that when you come into the ER, you're there on unlimited. Like you, you need to be tended to like somebody with a cardiac. As a matter of fact, have a quick anecdote. When I was in the ER, myself vomiting and all this kind of stuff, I actually helped the guy probably live because he was a quadriplegic who was going through respiratory distress himself and they were not taking it. And so again, it's one of these things where how do you heighten this awareness? I guess the first thing and this is the catch-22 for all of us If you have somebody going in with you, that's Number one ⁓ the greatest thing if you don't like Trevor and myself if you have a kind of a network That's a really positive but there's where I kind of like feel like well, where are the rest of the people? John McAleavey: Peace. Sasha Rabchevsky: And that's where, you know, I think that us and our platforms were able to discuss this, but we don't necessarily have solutions. And like you said, Trevor, bringing awareness to this in forums and having, you know, other people like Dr. Kershblum, whatever, they start echoing and resonating these things. It may start to take form. ⁓ Having said that, we've been doing this for a long time, John McAleavey: Mm-hmm. Sasha Rabchevsky: And I'm waiting to see what's going to nudge the needle because of the way funding is now, the way things are being cut, you know, and it's just not, it's not enticing. John McAleavey: Is this something that almost you need to get down to grassroots where ⁓ it gets into medical schools and curriculum and we bang that drum where we start to go to these major universities and where all these grants are going and say, hey, listen, we have to take this a lot more serious. Like you mentioned, six hours or something. I forget who was it that mentioned it was six hours of the curriculum. But yeah, I mean. Barry: I didn't hear. John McAleavey: What are we talking about? That's like ⁓ a drop in the bucket. We need to really get some eyes and ears on this situation. Sasha Rabchevsky: Yeah, yeah Barry: It's man. It's it's it's all the above. That's go ahead Well, was gonna say I think it was off air Trevor was talking about this. It's like you just got to keep on going and advocating again. All right, here's my bitch Here's my bitch. Okay, every every time we do this we call it Barry's bitch. Okay, so and and Here's my bitch. It's they are just shortening the the rehab to such a Sasha Rabchevsky: Well, well, so, so... Yeah. No, no, go ahead, Barry. John McAleavey: Go for it, the BB. Sasha Rabchevsky: the Barry: point where we were not connected to any what I call organic networks where just by hanging around a rehab facility for so many months you naturally connect with people, connect with contacts, you get comfortable with networks. They're sending people out there still in collars and heels for God's sake back into the community. They don't even have friends in chairs. That's my problem. They don't they're not connected. I mean the work that Kessler's Sasha Rabchevsky: Yeah. Barry: trying to get going and you talk, Sasha, what they're doing in British Columbia, they, anything outside that will increase navigation and helping people, there are good resources out there. That part I know, but they're so disconnected and sitting somewhere and no one's accessing them because they don't know how to. ⁓ Sorry, that's my, that's. John McAleavey: Yeah. Sasha Rabchevsky: Well, okay, so here's a small plug and Barry, you're aware of this and this long gentleman I'll introduce you to this app if you haven't heard it. It's called Spinaly, Spine Ally, however you wish to pronounce it. It's done by Aaron Phillips developing up in Canada. Long story short, and Kim Anderson, this guy got off the phone with him just a little while ago. I really believe that we need an app. John McAleavey: Okay. Sasha Rabchevsky: not any kind of computers and not centers of excellence for people to upload their data individually from their iPhones. Now pie in the sky, Sasha, bullshit. They've already got a prototype unleashed. They've already been using it for a year. They've already got a lot of preliminary data. The problem is is that there's a lot of people who want to wear hats, right? They want to take ownership of these kinds of things. That's where... John McAleavey: Bleh. Sasha Rabchevsky: Kim and I are working with him. We'll see how this goes. And this is the first time people have it online, ⁓ is that we are going to be pushing for organizations like the Reeve and Nielsen Foundation to give us money to do this because it's way overdue. Like why haven't we had a centralization process way before this? Because centers of excellence, of which there are 18 across the United States, represent our estimated numbers, right? John McAleavey: Yeah. Trevor Dyson-Hudson: Yeah. Sasha Rabchevsky: Well, those estimated numbers are based on 15 years ago, from what I understand, right? So there's another big quagmire is, well, if we want to represent ourselves, and we say we're 18,000 people, but really we're 25,000, so even 30,000 a year that get injured, that's a big difference when you go ask for money from politicians, because you have a bigger health burden, which we already do. You know, only second to ALS is quadriplegia in World Health Organization. So you didn't know that. John McAleavey: And Sasha, what information would you be able to upload into that app? What would that entail? Sasha Rabchevsky: Well, right now it's mostly personalized stuff and it's also by it's de identified also, which is wonderful. They don't own the data. They all have it in their repository. And I went over those algorithms today. It was amazing. I didn't know this stuff existed, but what you could do is once it's out there, so it's got stuff like how you feel in today, just kind of colloquial stuff, but resources, websites, all kinds of things that are dropped on menus where you don't need to leave the website, excuse me, the app. ⁓ Moreover, It's, it's, ⁓ anyway, I'm pushing this much too much because he's still going to develop it. But I think that when you hear about this and I'm to be plugging it pretty soon, follow along because I think this is the way to go because I don't think we're going to wait for somebody else to say what we're going to do with the data. And Barry, I think with your NAS kick work, doesn't it? You're working with, I believe it's Ian, excuse me, Abel on something AI component of some. John McAleavey: exciting. Barry: On the AI side of it, but not Spinelli, I am, it's, everybody's kind of floating around the same, what's happening right now, just a bit of a clarification to your point, because this is where the app idea comes from, is Nielsen funded NASDAQ to put together what's called an SCI powered network. That's more on the other side of looking at all the resources that are out there. How do we organize them? And how do we. Sasha Rabchevsky: Hmm. Sure, please. Yes. ⁓ Barry: basically give them the good housekeeping badge to say that this is good information so that people that are go looking for it don't run down a Google rabbit hole or now even AI because so the AI side of it is actually trying to create the ultimate SCI chat bot that it's good stuff in, good stuff out, which could be universal and publicly used and could be used on Spinelli and anything else. But to your point, where the app idea, circling back to what you're saying, Sasha. Sasha Rabchevsky: Yeah. Gotcha. John McAleavey: Mm-hmm. Sasha Rabchevsky: That's right. John McAleavey: Yeah. Sasha Rabchevsky: Mm. Barry: Arthritis has already been using it. They have a powered network and they use the data and they use it for, it's for research really. What do we do? And they can pull this stuff up. And muscular sclerosis has one too, where it's like a power network and an app that goes with it. What we don't have on the SCI side is this power networks and getting a move. They haven't settled on the platform or what the app would be. I'd love to see the two come together. Sasha Rabchevsky: Aha. Barry: But that's not there yet. But that's something you could advocate for, Sasha. think that would really. Sasha Rabchevsky: Gotcha. Yeah, I'd love to be a connection because I just got on. I mean, I was actually surprised at how much he's done. He gave us the whole deck. gave us the whole deck. I was really surprised. Be honest with you. Now, where it's going to go, and this is add to your question, Trevor, or maybe it was you, John, that asked about what can you put in? That's what we're going to be deciding, right? Put in your, for instance, I mean, one of the biggest problems, we don't know about traumatic versus atraumatic spinal cord injury. Trevor Dyson-Hudson: Got it. Sasha Rabchevsky: Like there's no network usually is typically just traumatic. What about a traumatic to stop the symptoms? So again, it's a very, it's a quagmire. You open up one thing and ⁓ shoot, but they've got algorithms. mean, I was just floored again. I'm not in a software engineer, but I'm just floored by what they've been doing and how much, and they've invested a lot of money into this. And he really, he keeps saying, I don't really have a, he was, he was happy that Kim and I talked to him. And actually he had mentioned you Barry, that you've been a very big supportive person in the whole thing. So, ⁓ Trevor Dyson-Hudson: Yeah. Sasha Rabchevsky: Anyway, food foods for thought with regard to how do we centralize this stuff. Trevor Dyson-Hudson: Right. Well, and you raise non-traumatic injuries, Sasha. mean, they're not accounted in the model systems, right? So, and there's likely much more than of those. And those individuals often aren't seeing rehab doctors. They're being treated by a neurologist. But they're dealing with all these secondary medical complications, just like somebody with a traumatic spinal cord injury. Sasha Rabchevsky: Night. John McAleavey: Mm-hmm. Mm-hmm. Well, gentlemen, I at the beginning of our conversation, I made a half-hearted joke about we were adding the fourth Beatle to ⁓ to today's podcast. And I think we've we've come up on 45 minutes now. I think what we'll need to do is get the band back together again. And ⁓ yeah, we'll have to hit on some some other topics. We absolutely love to have Dr. Trevor join us again. I think today. Sasha Rabchevsky: That was good. Trevor Dyson-Hudson: I've been trying to find... John McAleavey: We really did a service to shine a light on what is not known in emergency rooms and in hospitals and whatnot and try to shed a light onto that. Hopefully in the future, I know some topics such as aging with spinal cord injuries, something that we all are facing right now. We're not spring chickens any longer. That's something that we could put that ball on a tee and hit it down the fairway. There's plenty of other topics I know that we are gonna wanna riff about. so ⁓ why don't we go around the horn some final thoughts. First of all, Dr. Trevor, if you had any final thoughts on today's discussion, you wanted to get off your chest. Trevor Dyson-Hudson: Yeah, no, I mean, I just think we keep advocating, we keep educating, we can't stop. That's the take home message. It can happen to any of us and we support. You're not alone. I think that's the important thing. There are resources out there. If you are alone, don't be afraid to reach out to some of these organizations that are out there because they'll welcome you. John McAleavey: Yeah, I think that's good. How about you Barry? Barry: I like the idea, maybe it's for another day, but we should all think about writing a letter to our former self. And the things that we know now that could have kept us from getting into the hospital and doing some steps, at least being ready for such a visit, I know I'm not. And I get worried just by hearing these stories. I think that's, we need to be proactive in figuring these things out, unfortunately, because... The best advocates for us will be only ourselves, I think, in this case. John McAleavey: No doubt. Sasha, take us home. Sasha Rabchevsky: in Russian, be prepared, Russian, be prepared. It's it's a, yeah. I mean, it is a colloquialism, but honestly, like I was saying, if you don't have a team, like necessarily, if you don't have a companion, ⁓ you still have to have plans. And I know that sucks. John McAleavey: Hehehe With vodka! Barry: Yeah Sasha Rabchevsky: But don't let it go because when we were injured, we didn't have Christopher E. We didn't have these societies. We managed though, but it's because we managed from within. Now people have to manage from outside, which is really kind of the conundrum, you know, because now instead of being in the pool, they're being thrown out and then somehow they still have to, you know, be somehow connected to the pool. And so that's a difficult thing and be prepared. That's where everything and reach out and make connections. Barry: Right. John McAleavey: Words to live by, words to live by. Again, ⁓ thank you gentlemen on behalf of for Barry Monroe and Sasha Rabchevsky and the esteemed Dr. Trevor Dyson Hudson. I'm John McAleavy. We want to thank you for joining us and be on the lookout for ⁓ future episodes with, we're going to bring Dr. Trevor back. We'll also have some other guests and we hope that you'll hang around with us. And so thank you for being here for this. latest episode of the Three Men and an SCI podcast. Good