She Treated Brain Injuries Until She Had One

Mandi Dickey spent years helping patients recover from brain injuries as a board-certified neurology nurse practitioner.

Then a car accident gave her a traumatic brain injury of her own.

In this deeply personal conversation, Mandi and Wendy explore what happens when medical expertise collides with lived experience. They discuss why so many concussion patients are dismissed, the surprising ways brain injuries affect the entire body, the emotional toll of identity loss, and the financial and healthcare systems that often leave people to navigate recovery alone.

Together they challenge outdated assumptions about concussion, explain why "mild" traumatic brain injury can have life-changing consequences, and make the case for bringing lived experience into healthcare.

Whether you're living with brain injury, supporting someone who is, or simply curious about how healthcare can better serve patients, this conversation offers compassion, practical insight, and hope.

Follow Mandi on her podcast here: https://www.youtube.com/@brainwellnessnp4328/

Check out more of Mandi's work and resources for concussion patients on her website: https://brainwellnesssolutions.com/

Watch the full episode on YouTube: https://www.youtube.com/@BestGuessistan

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Transcript

SPEAKER_01 0:00

My guest today is Mandy Dickey. Mandy is a board-certified nurse practitioner and neurology specialist with a long-standing focus on concussion. For years, she helped patients navigate brain injury recovery. And then she had her own TBI and became a patient. Mandy brings both lived and clinical experience to the table. She also hosts a wonderful podcast called Brain Wellness, which I highly recommend. I listened to the new episode with Dr. Brolio this morning, and I learned two new phrases: concussion space, which feels very apt, and concussion civilian, which I also totally, totally love. Mandy was gracious enough to host me on her podcast a few weeks ago, and I'm very happy to be able to return the favor. So welcome to Rupture Mandy. Thank you for having me. So happy to have you. Let's start with your life before Rupture. Who were you? What drew you to healthcare? What drew you to neurology?

SPEAKER_00 0:54

Yeah, so funny thing, when I was a little girl, I thought I either wanted to be a nurse or a teacher, and I've been able to be both in my my adult life. I started out, well, I started out going to college thinking I was going to be a music major after that because I loved singing. And then realized that I didn't need a degree to sing, and it was going to take me way too long to get a degree to sing anyway. So I took a nursing assistant course and fell in love with it. And the rest was history after that for healthcare. So I've been in healthcare since 1999. And it started as a nurse and then a nurse practitioner in 2012 and got into neurology kind of by accident. The I the floor I started off on was a general medical surgical floor. And then I a spot opened up on the floor above me. And I thought, you know what, let's go try it out. And I fell in love with neurology. It was absolutely where I needed to be. And so when I when it was time to become a nurse practitioner, I knew exactly what direction I wanted to go with that too. So I talked to other nurse practitioners in neurology to figure out what degree they got and know exactly what I needed to do. And I started out in neurology being mostly a stroke provider. I had several family friends that had strokes. My uh grandmother had had several strokes before she passed. So that I felt drawn to that. And then unfortunately, my mother had a stroke. So it became very personal. And I became what I thought was extremely passionate about stroke care until the day that I had my brain injury myself. But I worked in the hospital. I was a neurohospitalist. I did all the things related to neurology in the hospital. So, in addition to stroke patients, I did see TPI patients in the hospital as well. And it was, it was the little things that I had learned in school. Yeah, keep off electronic devices for a few days, rest for a few days, and then you'll get better. So that's what I was telling people for years, because that's what school had taught me. And I only did hospital, so I didn't see anybody in the long term. I didn't know that that's not how it actually worked until my own injury. Six months before my accident, I had started my podcast, intending to be all things related to brain health and wellness, and that has since changed.

SPEAKER_02 3:03

Clearly.

SPEAKER_00 3:04

I was training for a marathon. I had run 12 half marathons at that point. I have three children of my own that are all boys very active. And I was doing all the things, and then the accident happened.

SPEAKER_01 3:17

Tell us about the accident. What happened?

SPEAKER_00 3:20

So April 13th of 2023, my husband and I were heading out to dinner. We weren't husband and wife yet. We were just engaged. We were heading out to dinner for date night. And I had just gotten to see brain surgery. So I had been in neurology forever, switched to neurosurgery because I wanted to expand my experiences. Got to see brain surgery that day, and it was amazing. So I was talking his ear off about how the fact that I was within inches of this person's brain watching a tumor being removed, and it was just exhilarating. And we got to the stoplight before the restaurant. The lights changed because of locations. It was difficult to see which one we thought ours had had changed. It had not, unfortunately, but there was only one car coming from the other direction, and they were far enough away that shouldn't have made a difference, but they were going really, really fast. And there was no stopping, no slowing down, no honking of the horns, no swerving, just smash. And it sliced off the front of our vehicle. I was the passenger in the car, so I took the brunt of the force. And you know how when you when you watch a movie and things kind of go into slow motion when they make that dramatic effect. Well, I had that slow motion dramatic effect as I felt my head moving from one side to the other. And there's no airbag in the center of the car to stop your head from moving. So it was a very dramatic effect on that. And life changed. I don't remember most of what happened that evening. I don't remember most of what happened in the next year, year and a half. And it took a long time to get my memory back. But there was a lot that happened in that time frame. So I was definitely one person and then a different one afterwards.

SPEAKER_01 4:55

Well, that's the definition of rupture. Yeah. Right. It it and and we use the word rupture specifically because it's not careful, it's not perfect, it's just wrenching. Yeah. So what what what happened? Who do what were your deficits? What were your symptoms? Who did you see? Like tell us about the aftermath.

SPEAKER_00 5:15

Yeah. So from the emergency room, they they did x-rays, they did CTs. I didn't have a bleed. I didn't have a fracture anywhere. My shoulder hurt, my knee hurt. So they sent me home on crutches because of my knee, but my shoulder hurt. So I wasn't exactly sure how I was supposed to use the crutches. But nobody ever said anything about TBI. They never said the word concussion. They said, go follow up with your primary if you're having any continued symptoms. And thankfully I had been in neurology. So I reached out to one of my former colleagues, someone who was still my friend, and I said, Hey, you know, we were in a car accident. I have a really bad headache, because that's the only thing that I knew that I had right away was a really bad headache. I said, Can you can can you just check me out and make sure I didn't have like a concussion or anything? And he fit me in on his lunch hour that week. And not only do I did I have a headache, but I couldn't, my eyes weren't tracking together. And when I did close my eyes, I couldn't stand up straight. And he asked me if I was aware of those things. And I said, No, I had no idea. So he sent me to physical therapy. He sent me to neurooptometry. Thankfully, I had a friend who said, go see this neurooptometrist in the Twin Cities because they knew them. So I did. And from there, I also got sent to OT for vision therapy because my eyes were not tracking together. And then the things started to unfold. We started to realize what all I had. So not only did I have vision deficits and balance issues, but I had cognitive issues. I couldn't understand text messages. I would look at them, and if it was more than a few words, I would get confused. I'm the youngest of five kids. We had family text messages going on all the time. And some of my sisters write novels. There was no reading of those novels. I couldn't understand what they meant. I would forget to pay bills. I would forget to update things. I forgot conversations. I almost forgot to get my kids to activities at different times. I could drive, but only about 15-20 minutes before my headache became a splitting headache. So thankfully, most of my things were within that 20-minute distance. Because beyond that, I I couldn't do it. My PTSD started being insanely crazy right away, just trying to get back into a vehicle. I would have panic attacks. If I saw an emergency vehicle drive by me, even without their lights on, I had a panic attack. My mood started spiraling because I was the breadwinner of our house and I could no longer work. And as the months went by, depression got worse because I couldn't do the things that I wanted to do. I had been training for a marathon. I couldn't even walk a block without getting winded. Couldn't walk up the stairs of my house without getting winded. Activity and tolerant tolerance went down the drain, gone. I lost my appetite. Also, couldn't eat, couldn't force myself to eat. Headaches were there, obviously. What just everything you could possibly think of. It started symptoms. Yeah. And so that whole ripping idea of the rupture. So there are actual pulls and tears of neurons in your brain. So it's truly rupturing everything from my medical knowledge. Torn, gone. I couldn't remember terminology. Wow. Wow. So trying to get back to work, even if I could remember things, even if I could tolerate the lights, the sounds, the smells, the everything, I wouldn't have been able to remember to do anything at work. I would hear a medical term and like, I know I should know that, but I can't remember what it means. And I don't have the wherewithal my cognition to look it up to figure out what it means.

SPEAKER_01 8:31

So were you working during this time?

SPEAKER_00 8:33

Like during the I uh so the accident was on a Thursday night. I thought I was just gonna do Friday off. And no, nope, it didn't end up just being Friday. It was it was uh a little over a year before I was back to doing anything. It was almost two years before I got back to being a nurse practitioner.

SPEAKER_01 8:51

So how did you I have two like huge questions. One is how did you get from there to here? And you can take this in whichever order you want. And the other is how did your lived experience differ from what your clinical experience taught you?

SPEAKER_00 9:04

We'll start with the second question, actually. Okay. So the lived experience was a hundred percent different from what my clinical experience taught me. All the textbooks still say that most people get better within three to four weeks. It was not three to four weeks. It was it was nothing like that. And if three to four weeks, I'd have been fine with that. I could have handled that. I had several months of savings that were gone very quickly, but I could have handled three to four weeks. But it was so different. And it was, I did not get better. I did not see improvements. I went to PT, I went to OT. We didn't think I needed cognitive therapy initially because my headache was so bad we thought everything was related to my headache. So we thought that when my headache improved, my cognition would improve. Well, it didn't. So six months later, I was getting a neuropsych test to figure out what was going on with my brain. And there were some areas that I was deficient. The rest was low normal, but there were some areas of deficiency. And thankfully I had a neuropsychologist who said, you know, given your level of expertise and education, I would have assumed that at baseline you would have scored much higher than this. And I'm like, yeah, I would so too. Yeah, I was one of those really annoying people in school that I never had to study. I could look at something and it was in my brain. So I annoyed everybody. I sometimes I even annoyed myself because I didn't have to study. I didn't have to learn. When I went to college, the first semester I went to college, it was a little bit difficult because I had never learned any study techniques. So trying to figure out, okay, what do I, what do I actually need to review to make sure that I know the information for the test? But I figured that out pretty quickly because I could. And that was not who I was anymore. So I could not remember any of those things. We started doing non-traditional treatments. So six months in when nothing was changing. I thankfully had a an amazing neurologist who was my friend, as I mentioned initially. And he said, you know, we've done everything inside the box now. Let's try things outside the box. Well, first, what was inside the box? Inside the box. What were the things you tried first? OT and the neurooptometry. Any medications? We tried a couple medications for my head. We tried a couple medications for my head and I had side effects to everything, like major side effects. So we said, okay, no, none of that. I I had already been doing a lot of supplements, vitamins, because I had migraines prior to the injury that were managed with all my supplements. I hadn't had a migraine in a long time. So it wasn't that wasn't a thing that I had to really worry about. So we we added a few more supplements and tried getting my sleep in in check, but I wasn't responding to the melatonin or anything either. I just either had side effects or it didn't work. So great. Yeah. Optimate choice. Yeah. So PT, OT, neurooptometry, meds. That's what we had tried. That's what, that's what he knew. That's what school has always taught us. So we did those things. That's inside the box. Okay. Well, yep. So outside the box, we I had a lot of things offered to me that I didn't have the money for. And then I had a couple things gifted to me that if I hadn't had those gifted to me, there's no way that I could have afforded those either. But I'm really thankful that I got them. One was the opportunity to do red light therapy. So red light therapy ended up being six months, three days a week, red light in the bed, red light in a laser. Exercise once I got to be able to add some exercise, exercise with oxygen therapy, PEMF, doing all the things at this one clinic. I also PMF, can you define? PEMF is pulsed electromagnetic frequency. So you sit on a mat and most of the time you don't even feel any vibrations. It's like the Earth's energy. So it's amazing. That it decreases your inflammation in your body. So lots of inflammation gets decreased when you do that. Same thing with the red light therapy and the exercise with oxygen. It helps to increase blood flow in your body, it decreases inflammation and it allows your body to heal like it's supposed to heal. You don't get negative side effects because you're not adding a drug to your body. It's just light and energy. So that was amazing. From day one when I went there, I saw improvements. I never went back to what I was prior to those treatments. But it was still slow. It was not an overnight fix. It was not, here you go, you can go back to work type of thing. Six months after starting the red light therapy, I was able to work at that clinic providing the same treatment that had helped me because it was simple. I could make flashcards to run the lasers. I didn't have to think about what to do with those. And as I was doing those treatments, I was able to start making connections. I didn't even realize it, but people would ask me medical questions. And initially I kind of had to really answer at a high level or just kind of maneuver around the question somehow. And then all of a sudden, one day, somebody was talking to me about pulling a muscle in their calf and like a light switch went off. And I'm like, oh, that's the gastrochnemius. I tore that several years ago. And I walked out of the room and I just kind of looked around. I'm like, where did that come from? Like, I haven't been able to retrieve medical knowledge in my brain for at this point a year and a half. And all of a sudden it was just there. Wow. So doing those treatments, right? It was crazy. And then and then I started having more of those episodes where I could just pull something out and I knew what it meant. And then I was able to start taking down some notes and reviewing my notes. And I started opening up my neurology textbooks and and drawing pictures and labeling things and going through one system at a time. I made a list of all the things I needed to know in my job. And I started checking them off one by one on my notes and reviewing everything and going back and looking at things. And the more I looked at it, the more I talked about it, being a laser technician, the more I I interacted with other people, the more those connections started being made again.

SPEAKER_01 14:34

That's so that is so interesting.

SPEAKER_00 14:36

When did the headache stop?

SPEAKER_01 14:38

I haven't. Yeah, okay. Mine's four years old, so I was just curious.

SPEAKER_00 14:42

Yeah. No. And I could go into what I still have at some point here, too.

SPEAKER_01 14:47

I do want to so so the cognition got better. That's fascinating. What about the emotional mood parts of it?

SPEAKER_00 14:54

Got better. I had an individual therapist for talk therapy. I had a PTSD therapist to go through some EMDR eye movement desensitization retraining for the car accident. Three months of treatments in EMDR, and I no longer had panic attacks in the car.

SPEAKER_01 15:11

Did you have no I was not a panicky person.

SPEAKER_00 15:15

I was super chill, super calm. Like there was not a panic attack to be had. No. And then the anxiety, the the concussion just it brought it.

SPEAKER_01 15:25

If you haven't had it before, it creates anxiety. If you've already had it, it blows it up.

SPEAKER_00 15:29

Yeah. Yeah. I had had some situational depression issues from divorce, from working in the hospital during COVID. I had had some situational depression issues, but they always resolved within a matter of months. It was a situation, it would go away. It was a situation, it would go away. It was never longstanding. It was never anything that caused me to have really dark thoughts. Several months after my injury, I was having dark thoughts that I never thought would ever come into my head. And it was scary. And that's why I asked for help because I knew that I could not do it on my own. And I didn't know how to fix that part of my brain on my own. And working in neurology as long as I have, there's a fine line between psych and neuro. And I walked that fine line for many, many years, but I crossed that line. And it was not just neuro anymore at this point. There was definitely that psych component that I was having these dark thoughts that scared the crap out of me.

SPEAKER_01 16:21

I've had the same. I know what you mean. And it's the first time you have them, it's terrifying.

SPEAKER_00 16:24

It is. I I had never experienced anything like that before. So it was it was bizarre. It was scary. It was eye-opening.

SPEAKER_01 16:34

So agree to have the eye-opening because I've I had never have I've never had depression. I never I don't think you can understand it when other people describe it. And then when you have those incredibly dark thoughts, it's shocking. Yeah. Yeah. But it does give you empathy for people who have to live with this. I don't know how people live with this.

SPEAKER_00 16:54

Yeah. And I I dealt with it for uh almost a year. So not always as dark as it was in the beginning, but it was it was still not great. I can't imagine doing this year after year after year. It's oh my gosh, I have so much more empathy now. And I used to say, so before my injury, when I had the migraines, when I had I had been diagnosed with an autoimmune illness too. So I had all these things. I'm like, oh, you know what? I'm just the universe is giving me these things so that I can be more empathic toward my patients. And now I'm like, okay, I think I've got the empathy thing down. I think we're good. I don't need any more empathy on my patients because of all the experiences I've had since that head injury.

SPEAKER_01 17:34

So now to the other question: the lived experience versus the clinical experience.

SPEAKER_00 17:38

Yep. So it's as things continued, as they kept going on and on and on and having other things show up. And oh, by the way, somewhere in there, I started realizing that it was autonomic nervous system dysfunction that I had as well. So not quite. Yeah. So autonomic nervous system, that's our main two things. And this is exactly how I describe it to my patients, too. So there's two separate distinct uh main categories for the autonomic nervous system. Your sympathetic and your parasympathetic. Your sympathetics, your fight or flight. Your parasympathetic, that's what we typically refer to as the rest and digest. They're supposed to balance each other out. When you have a brain injury, when you have some sort of other trauma, PTSD, you have all these other things, your sympathetic system just gets on overdrive. So your body does not respond like it's normally supposed to. If you get spooked by something, your blood pressure goes up a little bit, but it should come right back down. Because once you realize that there's not an actual danger in effect, your body's supposed to respond and calm itself down again. And you should have this, it's called autonomic because it's an automatic thing that happens in your body. So we have this automatic function of this balance between the sympathetic and the parasympathetic. And then when that sympathetic gets on overdrive, the parasympathetic just can't keep up. It can't bring it back down, it can't calm you back down. So when you get spooked by something, you get triggered by something, that trigger stays.

SPEAKER_01 18:59

I refer to that as my emotions having a half-life, which never used to be the case. I have learned that I respond to, I respond with rage to anything unexpected, and that has a half-life of 24 hours. And I cannot make any decisions in those 24 hours. The corollary is if I'm enthusiastic about something, if I'm excited about something, that has a half-life of three days. And I have to wait for that to cool before I can actually interrogate the situation because otherwise it's all an emotional response. Yeah. And it I it's ex it this is my layperson's version of what you're describing, you know, medically, but it is this field. It doesn't just return to normal quickly.

SPEAKER_00 19:34

Yeah. No. Yeah. Nope. So that autonomic nervous system affects so many of the functions in your body, your heart rate, your breathing, your digestion, because that so if you've heard the term the vagus nerve, the vagus nerve is the main nerve in your body, the cranial nerve, the only cranial nerve that comes outside of the brain and goes through the rest of your body. And it goes down through your throat, through your diaphragm, down into your bowels, into your arms and into your legs. And you can you can have all these different sensations in your body, weird little tingling nervy sensations. You can have disruption of your bowels, constipation, diarrhea. You can have disruption of your breathing, slow breathing, shallow breathing, having these little hiccups, almost like apneic when you stop breathing spells. It can lead to people having sleep apnea. It can lead to, again, changes in your blood pressure, high blood pressure, blood pressure that plummets when you stand up, so you get really dizzy. There's so many symptoms that come along with the autonomic nervous system. And as I went through the many, many months of recovery, they started popping up little by little. The exercise intolerance is also part of that.

SPEAKER_02 20:38

Yeah.

SPEAKER_01 20:39

That's so interesting. So this is something I think a lot of people don't understand is how you can develop all of these other symptoms and conditions as sort of the knock-on effects of the concussion because of the systems that you're describing. I spoke to someone who said she had GI problems after a concussion had and had never had them before. I developed a very, very rare autoimmune disease within 30 days.

SPEAKER_02 21:03

Yeah.

SPEAKER_01 21:04

It is so rare that most rheumatologists have never seen a case of it. But there's no way they're not connected. And when I talked to, I talked to my rheumatologist at the time and the neurologist, and they both said, we can't prove it, but and it it was, you know what, but they basically said was the first system that the first system in the body that responds to an assault is the immune system. So they said it is not at all unusual to have an immune system response, to develop an extremely rare autoimmune disease, maybe a little bit sort of, you know, unusual, but the fact that the the the degree to which the brain controls everything and the degree to which the immune system responds to everything, everything is connected. And I don't I don't think a lot of people understand that about concussion. No. It's just everything I can hear, people say it's just a concussion.

SPEAKER_00 21:49

Yeah. Yeah. Yep. So it can it can affect your hormones. For women, we can have changes in our menstrual cycles. We can have difficulty getting pregnant if you're near perimenopause. Age, it can push you into perimenopause or full menopause. If you are postmenopausal, it can start to trigger those hot flashes all over again. For men or women, it can cause sexual dysfunction. For men, it can cause issues with erectile dysfunction. It can affect every single cell in our body. And we don't think about these things because, yeah, it's just a concussion. You hit your head, it's just a concussion. It's you might have some headache, balance issues, some double vision, but those should all clear up and go away and you're fine in the three departments. Right. We'll be fine in a few weeks. We don't think about all of these other things. So in school, I was never taught about all of these other things. These are things that I've learned since then. I've been able to find there is research about every single one of these bodily functions. Autoimmune disease. There is research to show that a TBI can trigger autoimmune disease. We don't know which one. We never know which one somebody will get, but it can trigger autoimmune disease. It can trigger cardiac disease. It can trigger breathing problems, hormonal issues, gastric issues. Every single cell in your body can have an issue from a concussion.

SPEAKER_01 23:01

From just a concussion.

SPEAKER_00 23:03

Just a concussion. And so kind of taking a step back on that just a concussion part too. I hate that because the terminology that we've always used is mild, moderate, and severe TBI. Can we talk about that? Yeah. Let's talk about that. So I hate these terms. I tell I tell patients that these terms exist and I hate them, but I will tell you them anyway. So mild, moderate, and severe TBI is based on the level of loss of consciousness, if there is any, any changes on head imaging and that basic neurological exam we call a Glasgow coma scale, which just looks at are your eyes open? Are you verbally responsive? And can you move? It's a very rudimentary exam. So on those things, if you had no loss of consciousness or maybe very many, excuse me, very brief. Sometimes my words just don't want to move. So you're in a safe space. Yeah. So minimal to no loss of consciousness, no changes on your head imaging and a normal Lasco Coma scale, you had a mild TBI.

SPEAKER_01 24:04

Which is the definition of a concussion. It's a mild.

SPEAKER_00 24:06

Which is a concussion. And that's 80-ish percent of all TBIs, is a mild concussion. So I'm gonna come back to that in a second here, too. Moderate TBI is if you've had a loss of consciousness, very brief up to 24 hours. Maybe you have some minor changes on your CT or MRI, but still can be negative. And then a slight decrease on the Glasgow coma scale. And then a severe is loss of consciousness greater than 24 hours, changes on your MRI. So you have a bleed, you have a fracture, or you have a tiny stroke, because you can also have a stroke with that. A lot of people don't think about that either. But that can cause localized trauma and cause a vessel to rupture right at that moment and cause a stroke. And then you have further decrease in the glass glaucoma scale. Severe is only 10% of the TBIs. Moderate is 10% of the TBIs. Mild is 80%. That's our concussion. So for years and years, many people have thought you have to hit your head and you have to lose consciousness. Well, if only 80, if only 80% of those patients only have that concussion, most of them are not losing consciousness. So 80% of TBIs do not lose consciousness.

SPEAKER_01 25:13

The scale is numerous.

SPEAKER_00 25:14

Almost 100% of concussions don't lose consciousness. And that hitting your head, you don't have to hit your head. Only about half actually hit their head. The rest are from whiplash. Because that same movement that causes your neck to snap back and forth causes your brain to slosh back and forth inside of your skull. Guess what? I didn't hit my head in my car accident.

SPEAKER_01 25:32

That's right.

SPEAKER_00 25:33

But you were shaking. I was shaking. It's basic basically like a shaken baby.

unknown 25:37

Right.

SPEAKER_01 25:37

Yeah.

SPEAKER_00 25:38

Yeah.

SPEAKER_01 25:38

But a shaken adult. Yeah. Language around mild is it's distressing, right? Because it minimizes. I mean, you had told me, you were the one who told me that actually, like it could be up to 50%, 50% or more of people who get a concussion have these persistent, have this, you know, chronic persistent problem. Yeah. Which people don't. I was still working on the 10 to 30%. So, you know, I I heard that again on your podcast on the episode today. And to tell people who are living with these persistent symptoms, and you had a whole basket of them, I had a whole basket of them, and to tell us that that's mild minimizes everything we're feeling and makes us feel like we're nuts and then makes us feel guilt and shame that we can't do the things we could do before, because if it's only mild, you should be able to do it. So we lard on all of these other problems.

unknown 26:24

Yeah.

SPEAKER_01 26:24

Okay. So why don't more clinicians know what you know in terms of the relationship? First of all, the concussion degrees and all of that, but also the relationship, you know, the fact that every cell in the body is affected?

SPEAKER_00 26:36

I think a lot of it goes back to that education. There's very minimal education for nurses, nurse practitioners, doctors, PAs, PTs, OTs. Everybody gets very minimal education on what truly is a head injury. What is a TBI? What's the definition? How can it affect the rest of the body? Very minimal. What I learned in school was just the tip of the iceberg. It was the red flags, the things you have to watch for, like the nausea, the severe headache, the double vision, those red flags make sure you get to the ER. But it doesn't say what to do beyond that. Right. Right. And if you have a bleed, then you get neurosurgery involved to see if they're going to do some surgical thing. If not, then it's just monitoring. But again, they should get better. And still, still in 2026, the textbooks still say most people get better in three to four weeks. So when Dr. Burley and I, yeah, when Dr. Burley and I talked on my podcast, we talked about how athletes, yes, 85% of athletes get better within a month, but they're exercising all the time. And then we have these lay people who may or may not be exercising, most of them don't. And most of them don't get the the water intake and the good nutrition that they need. Whereas if you're a collegiate or professional athlete, they're making sure you get your nutrition and your water and your exercise. So you have people managing that. So if you're a professional or a collegiate athlete, right, we don't get that. Civilians don't get that. We don't get that. Even military personnel get a little bit more than that. Still not great in the military. But it's there's so many things that we have yet to learn and to teach our providers so that they can do better care for our patients. Well, what you said, I shouldn't have had to hit my head to learn this.

SPEAKER_01 28:12

No, you shouldn't have had to. And the fact that there's all this research that is available, but hasn't made it into the education, hasn't made it into the training materials, that's a design flaw. That is a gap. And given the high incidence of concussions, they're not rare, right? The number of people, I mean, we know the numbers. So lots of people year on year on year who aren't getting better. It does happen to people in the military. It does happen to people, you know, who who do sports professionally. And, you know, I heard your pickleball thing too. Yeah. But it happens to, it happens to so many people. It is so common. It's part of the vocabulary. And yet, all of this incredibly important information isn't being taught to the providers. And no wonder we're all stuck in this. No wonder we're all podcasting to try and figure this out. The institutions aren't. Yeah. That's why we're doing it. One question before we go on to systems failure, because I want to get to that. You had mentioned auditory processing issues when we talked on your podcast. And could you just say a word or two about that?

SPEAKER_00 29:09

Because Yeah. So that was something that I didn't really know about either until my own injury. Um, auditory processing. So many patients will describe that they have difficulties with tolerating sounds. Things, sounds get really sensitive. Sometimes sounds get painful, which we call hyperacusis. But if you if you can't tolerate all those sounds around you, things are normal sounding things are obnoxious to you. And if you are trying to be in a space where lots of people are talking at the same time, I have teenage children. They have activities. There's lots of sounds when we go to all these activities. And I would not be able to understand what people were saying when there were lots of conversations going on. I tried joining one of my friends, had a birthday celebration at a restaurant. I hadn't been to a restaurant in a while. I tried going, there were so many conversations going on. I couldn't even talk to the person that I was next to unless I was facing them and I could watch their mouth moving because I couldn't hear them and I couldn't understand everything that they said. So oftentimes I would kind of tune out or not answer questions or have to ask them to repeat themselves because I couldn't hear them. I couldn't understand them. Things were too overwhelming. It would make me angry. It would raise that little irritable button in me. And then I got connected with an audiologist who just happens to be one of the foremost people in the United States within 20 minutes of my home on this auditory processing disorder. And we talked about it because I wanted to be able to send patients to her because we talked about the commonality of it. I had her come on my podcast. We talked about it. And she said, you know, why don't you come and try the testing that I do and we'll just see what you have left? Lo and behold, I still had some major issues with my auditory nerves. They would shut down. They wouldn't even respond to sound. So not only could I not hear, not understand, it was a nerve issue, nerve damage issue in my ears. So I now have hearing aids so that I can understand what people are saying, because it brings the volume of everything else around me down so that I can have a conversation. I can go out to a restaurant now and hear what the waiter is asking me and hear whoever I'm sitting at the table with.

SPEAKER_01 31:09

This is huge. So first of all, I'm the daughter of an audiologist. My dad taught audiology and speech pathology at NYU for 50 years, and Minnesota was his favorite state because so many hearing aid companies are there.

SPEAKER_02 31:19

Yeah.

SPEAKER_01 31:20

So I have a lot of affinity for this, but I also have the same problem. And it it showed up just two weeks ago. We had a bunch of people here. Everybody was in the living room, and there were a bunch of like individual conversations going on. And it was my my I felt it in my body and I felt it in my brain. It was so uncomfortable. I couldn't understand what anyone was saying. It was this painful blur. I just left. I just had to walk out of the house and go take a walk to just clear it, clear it down. And I like the idea of the hearing aids to be able to turn it to tune it down. My husband gets annoyed at me when I am on the phone with someone and he says something to me. I can't understand what someone is saying if I'm talking to someone. I it just doesn't work. Same. Yeah. Yeah.

unknown 31:57

Yeah.

SPEAKER_01 31:58

And if you could connect me to that archaeologist, I'd be real interested in that.

SPEAKER_00 32:02

I uh I asked her if there was anybody in your area, and there's not, unfortunately, because there's only five people that do the testing that she does in the entire United States, and none of them are in your area. But certainly nobody in Vermont. Nobody in New York. All right, we'll talk. We'll we'll talk, yeah. So the other part of that is that you what you hear will help you with your memory. So if you don't hear things appropriately, you can't remember things appropriately either. And a hidden hearing loss, which auditory processing disorder is considered a hidden hearing loss because it's not that you truly have hearing loss. It's that you have the loss of being able to understand what's going on. And with that, so with that hidden, hidden hearing loss, because you can have a radio regular audiogram and it's not gonna identify it. You have to have a special test for it. So when you have that, it's it affects your memory. So you can't remember things as well if you are not hearing them appropriately. So many patients after a brain injury complain of memory issues. They can't remember things. Well, they also can't hear things. So if you can't hear things, you're not gonna remember. And it's amazing how our cognition improves and how your brain fatigue improves when you don't have to focus so much on trying to understand what you hear.

SPEAKER_01 33:10

Absolutely. Well, and we also know that hearing loss can lead to dementia. I mean, there's a cognitive connection to hearing loss. But to your point before, there are sounds I still can't tolerate. We're four years out. Horns, whether it's musical. I mean, we we just moved out of New York City and to the country, and I'm really excited about a life without constant sirens and all because it's assaulting. But electronic music can't tolerate that anymore. I had just fallen in love with jazz before this happened, and now a lot of jazz is off the table. Shoot. But the sound problem is is persistent. Yeah. But it is, it's a processing issue. It's not a hearing issue, right? Right. Before we get to the systems thing, one other thing. So because I also think this gets to the emotional part of it. We live in this culture of sort of forced recovery, right? If you do these five things, if you follow my nine steps, whatever it is, you will recover on this schedule. And when you don't, you're made to feel like it's your fault. You didn't follow the program, you didn't do all of the things. And it's this culture of toxic positivity that I think it's another thing we lard on to people going through what we go through that just makes it so, so difficult. And I'm just wondering how that shows up, like in your practice, in your lived experience, this whole sort of recovery culture we have.

SPEAKER_00 34:24

Yeah. Yeah. I felt like a failure because I couldn't get myself better and I was a neurology nurse practitioner. Like, what am I doing? If I can't get myself better, why, how am I going to be able to help anybody else? So I felt like a huge failure. I felt like a huge burden on my family. Like there was something else that I should be doing. So I worked really hard and I pushed myself really hard and I burnt myself out really badly because the harder I pushed, the more work it took me to try to heal. So I pushed too hard and I I actually made things a little bit slower for myself at times. And I see that in my patients all the time as well. They they try to do things, and as soon as they have a day where they feel good, they push themselves and they do all the things. And then the next day they're paying for it. Or the next couple days, they're paying for it.

SPEAKER_01 35:09

Well, we also have a culture that we also believe that we should be able to muscle through everything, right? It's just this is a warrior mentality.

SPEAKER_00 35:15

Yeah. Yep. And people try and they push themselves so hard, and then they still feel like failures because they're they're not getting better. And then they come see me and they're like, Well, I've done everything that I can. And they say, Well, you haven't done everything because nobody's told you about these other things. So let's try these other things because they can still help you get better. There's a real issue.

SPEAKER_01 35:34

Okay, now to the systems question. So one of the things that we talk about in Rupture and in my in the fictional land of Basguesistan is one of the things that rupture does, besides just wrenching your life into before and after, is it reveals systems failures. It shows you that systems that you might have assumed would be there for you if you ever needed them, but might not be. For me, the first one that failed was my experience with the disability system. As soon as I went through that process, which I did alone, which no one with a brain injury should do. Yeah. And was denied, even though I was told I was going to be denied, because everyone on Reddit said you'll be denied this first three, four, eight hundred times. My first thought was this is a broken system. Then I thought about it more and said, actually, I'm not sure it's a broken that is a broken system. I just think it's designed for a different outcome. Yes. I don't think it's actually designed to support people who can't work because of disabilities. I think it's designed to prevent what the system considers fraud.

SPEAKER_00 36:29

Yes.

SPEAKER_01 36:29

That we may not. But it does reveal systems failures. For a lot of people that I've talked to, the healthcare system failed. The insurance system failed. For a lot of people, it's identity. Like if you and if you are not the same person as you were before, who are you? For you, what systems failures did the rupture reveal?

SPEAKER_00 36:46

Yeah. The first one I think was the financial system. All things related to finance. I was the breadwinner of our family. So I made the most money. Everything was based off of my income before my husband and his daughter even came into our household. It was all my income. And I did not have that. And we had car insurance. And the car insurance, they never tell you what you might actually get if something happens. So when you pay for this $500,000 policy or whatever, there's little fine print that we probably don't even think about. So of that $500,000, if you get hit by somebody who doesn't have insurance, it cuts it in half. If you are involved and there's any fault of yours in that accident, or in Minnesota, we're a no-fault state, so everybody gets to split the bill, then you get even less. Of my $500,000 policy, I got $20,000 for medical expenses and $20,000 for lost wages. Whoa. That was it. That doesn't go very far. No. So yeah, that was gone pretty quickly. My short-term disability for work, thankfully, I had only been there for a month. They didn't have to support me, but they did because it's an amazing employer that I worked for. And I got short, they they approved my short-term disability. So that was 12 weeks. So I got that. And then it was supposed to automatically switch over to long-term disability, which it didn't. I had to apply for the long-term disability and apply and apply and apply because they didn't get paperwork. They, I didn't know that they didn't get paperwork. So I got automatically denied the first time. And then I had to resubmit, reapply. And it took a year for them to finally say, Oh yeah, you can have your long-term disability. But I went a year with no payments whatsoever because car insurance money was gone and disability money was gone. And savings were gone. Savings was gone. So I had to pull money out of my retirement to keep my mortgage going. Because that was the only way that I could keep a roof over my family. So I don't get to retire ever right now. So the financial part was stupid. And for lack of better terms, it was stupid. No, I tried filing for county assistance. And based on my husband's income with a family of five, we were $100 over the cutoff for financial assistance.

SPEAKER_01 39:03

$100.

SPEAKER_00 39:04

$100. So we got denied everything. We got no county assistance. We got no anything because I didn't qualify for anything else at that point. Like, are you kidding me? I tried filing for Social Security, got denied, reapplied, got denied again. And they said, well, if you have by this point now, I was working as the laser technician. If you make $1,500 a month in income, you're considered gainfully employed. My mortgage is $2,000 a month. So $1,500 a month, you're considered gainfully employed. So Social Security automatically just does denies you. You're done. So the financial system failed me considerably because there was nothing to help me at that point.

SPEAKER_01 39:47

Wow.

SPEAKER_00 39:48

So that was the number one.

SPEAKER_01 39:49

That was that's the that's a huge one.

SPEAKER_00 39:51

Yeah. Well that caused a lot of issues.

SPEAKER_01 39:54

Oh, I'm sure. Yeah. That and that actually also has knock-on effects to other systems, right? Because that will hit your identity and your confidence really hard.

SPEAKER_00 40:01

Yep. So the identity part, that was my other big system that hit because I didn't realize how much I identified as a nurse practitioner until I couldn't do it. I thought, well, I'm a I'm a wife, I'm a mom, I'm a sister, I'm a I'm a friend, I've got all these titles, I'm a runner, I do all these things, and I'm a nurse practitioner. No, I'm a nurse practitioner who does all those things.

SPEAKER_02 40:23

Right.

SPEAKER_00 40:24

And I didn't realize that until I couldn't do the thing that gave me money and the thing that gave me purpose in life. Like that, yes, I I love my children. I I feel purpose for raising them, but it's not like when I go to work and I can help somebody else and get them through the things that they do and use the education that I've I'm still paying for, by the way. So yeah, there's that too. Using that education that I work so hard to get. Like I worked so hard to get to the respected level of practice that I was at. And then it was just stripped away from me in one crash.

SPEAKER_01 40:56

There's also a, I was having a conversation with somebody about this yesterday. We're actually recording next week about it's sort of a uniquely American concept that our identities are so tethered to our jobs. And our our value is tethered to our productivity. It isn't to all those other things you said you are. And then you go to other countries, people, the the first question people ask each other isn't what do you do? They actually don't start. That that is part of the sort of American ethos, which makes, again, it makes it even harder and you feel even guiltier, and there's more shame, and the pressure keeps continuing. So, okay, so I'm going to give you the magic whiteboard, right? So every guest gets a magic whiteboard. You have no barriers, you can fix whichever system. And I'm guessing it's the financial system you want to fix first. How would you fix it? What are the couple things you would do so that no one else has to go through this?

SPEAKER_00 41:46

Yeah, you know, as I've been trying to think about that for a long time, honestly, because my patients struggle with this over and over again. And I spend way too many hours trying to fill out paperwork so that they can get their disability and their their whatever, so that they can get some kind of financial assistance. I write legal letters for them to try to get them through legal cases. It's I do whatever I can to try to help support the patients, but I'm only one person. Right. Across the country, it's there are variable resources. So every state has their own different resources. And I'm going through the list of those on my podcast as well, getting people from different states to come on and talk about their resources because it's fascinating how different our 50 states are. And that's just within the United States.

SPEAKER_01 42:27

It is, it's like 50 countries. From an insurance point of view, it is 50 countries.

SPEAKER_00 42:31

Yeah. Yeah. So they're all so different and they all offer different things. Some of them have case management programs that can help you if you're on Medicare. If you're on personal insurance, you don't get to use those case managers. So if we had case managers available for everyone, regardless of what kind of insurance you had, there would be somebody to help you through the hoops that you have to go through for finances. Because not only do you get denied things from financial aspect, they ask you questions that you don't understand as the person with the brain injury. I, so for example, with my mortgage, I was able to put my mortgage on deferment for six months. We I forget the term, forbearance. So we put the mortgage on forbearance for six months. I didn't understand all the things that went into that. So on that mortgage forbearance for six months, yes, they would put it on pause, but at the end of six months, I had to pay it all back in full. Otherwise, I'd be considered delinquent. And then in those six months, I had to check in every single month to let them know that I still wasn't working and I still needed the forbearance. I'm an individual with a brain injury. I don't remember that you even told me any of that to begin with. I don't remember that I'm supposed to check in with you every month. I almost lost my forbearance. I almost lost my mortgage because I didn't know those things existed. Because I was responsible for it. I called them like, can't, is there any way that you guys can call me? No, that's your responsibility. I'm like, I'm the one with the brain injury. How am I supposed to remember to do all this when I don't rem I don't remember that we even had that conversation to begin with? I don't remember. that we had the conversation about the ramifications. That's when I had first had to pull money out of my retirement was to pay off that mortgage so that I wasn't delinquent at the end of that forbearance. So a case manager would help. Somebody that can help track all of those things for you, help make conversations, help you figure out how to get your mortgage on forbearance, how to put your loan, any of your loans that you have on a deferment, because many of your loans will also allow you deferment for financial difficulties. But many people don't know that.

SPEAKER_01 44:29

People don't know that. People don't. I mean, like I said, I was filling up the disability application alone with a, I mean, I was two years into it. So it was with a brain injury. And I got to one screen and I don't remember what the question was and there was only one question on the screen and I knew what the right answer was and I clicked the other answer. Yeah. And then I had to try and undo an entire I I spoke to someone from Social Security disability who said to me, you need to redo the entire application. And it was so such an overwhelming idea. I mean I felt the physical like I just sat there like this like you can't possibly expect someone with a brain injury to do that. Right. Case managers would help. Yeah. That's a great idea. Yeah. I love that. Okay. That's that is one of the best uses of the magic whiteboard that I've heard and I've heard some really, really, really good ones. Okay. So the final thing I want to ask you about is you know you know about my country called Best Gesistan and you know why it's called Best Gesistan and it's governed by a series of ministries and every guest gets a ministry. And the ministry I have for you and you and I talked about it so this is not a surprise is the Ministry of Dual Citizenship because you do represent the lived and clinical side. So you're comfortable with it? You're comfortable running that ministry? Yeah really perfect for it. So I'm really glad. I will send you the paperwork. It will be confounding. It doesn't matter because one of the things we say in Best Guessan are there are no wrong answers. So if you feel it wrong, it doesn't matter. We don't care. It doesn't matter everything it's all good in Best Guessan it's not utopia but it's a place where the accommodations are anticipated, not negotiated. And it's a place where the place rises to meet you, not the other way around. So welcome to Best Guessan official Dom. We really did need this ministry because we need more of this clinical and lived experience so that we're actually trying to solve the problem together. And everything you shared today has just been fantastic. Where can people learn about your work?

SPEAKER_00 46:16

Yeah so I do have a website it is brainwellness solutions.com and that website literally can can can connect you with just about everything. I have my podcast Brain Wellness the podcast I started a book series Brain Wellness the book it started off with help I saw a migraine book. I wrote a book about my first year of recovery and I have another book coming out next month for concussion help. So that one's coming all of my socials are are linked on my website. I'm on Facebook, Instagram, LinkedIn, YouTube, TikTok I post the podcast everywhere. And just one more announcement I partnered up with two other nurse practitioners who also neurology nurse practitioners who've had brain injuries when I try to find my people I we pull them together and the three of us are putting out a new podcast that we call NPs Unfiltered, the TBI recovery journey talking about all the things from that dual citizenship both sides of the these stethoscope there. So that's up and coming that one's coming out here soon.

SPEAKER_01 47:12

That's great. We'd love to meet them and they might want to become you know officials the best guests to stand too they might the bureaucracy keeps sprawling we need Euro yes yep so yeah lots of things that that is all great information and thank you so much for joining me today Mandy this is really fantastic.

SPEAKER_00 47:28

Thank you Wendy