Strokes in Younger Patients with Journalist Kristen Aguirre

Episode Transcript

Dr. Correa:
From the American Academy of Neurology, I'm Dr. Daniel Correa.

Dr. Peters:
And I am Dr. Kathy Peters. And this is the Brain & Life Podcast.

Dr. Correa:
Welcome back to the Brain & Life Podcast. Kathy, are you keeping cool while it's so hot out there?

Dr. Peters:
I'm really trying. How about you?

Dr. Correa:
Well, I mean, I'm in New York and yes, it gets hot during the days, but thankfully we have some cooler mornings. We have some cool rain in the afternoons to just temper the heat. But I imagine it's probably a little bit of a different life in North Carolina for you.

Dr. Peters:
Oh, yes. I'm getting very good use of my neck fan. I don't know if you've seen these online where you put it on your neck. Those are a gem of a tool. So I would say check it out.

Dr. Correa:
To say it hasn't been so hot that I've had to consider carrying a neck fan. Well, recently, just this last week I got a chance to be outside on... Yes, it was a hot day, but it was nice to be in the park and enjoy an event, a community event for Juneteenth. Did you get a chance to participate in any community activities that day?

Dr. Peters:
Well, as part of my little Duke neurology, neuro-oncology community, our community event for Juneteenth was graduating our two fellows, Dr. [inaudible 00:01:30] and Dr. Wilson. I'm just so proud of them and our entire group that educated them. And when you think about community, you think about coming together. And what was wonderful is we had this dinner for them and we were all at this really long table. And we were just sharing stories about their journey, about our experiences with them. And it was just that sense of community was just really apparent.

Dr. Correa:
Well, that day is a celebration of freedom and remembering the importance of freedom for so many people. It's sometimes tough though to see some of our trainees fly away. Yeah. That day for me, I was at a RUN, WALK N ROL event in Central Park. It's led by a community organization that has been developing an LGBTQ health center in Harlem that's dedicated to increasing access for different marginalized communities in our area.
I was so happy to be there and participate. We actually put together a team to join me from Albert Einstein College of Medicine, of students and faculty and staff. So it was a whole variety of people. And we joined over a 1000 other people to help contribute towards this initiative. And the experience of seeing families with strollers, people with their wheelchairs, people of all abilities, whether they were full-on running... Someone finished the 5K in 16 minutes. Or just coming in and enjoying the space and the park over the hour or so. I mean, it was amazing to see and to see everyone come together to fundraise, to spend time in community and fundraise for such a great initiative.

Dr. Peters:
It sounds like you were really celebrating diversity and neurodiversity at its best.

Dr. Correa:
Yeah. Well, our guest today has literally and figuratively navigated many obstacles in the path of her recovery from a stroke as a young woman. Some of those have come with her job and trying to get back to work, moving through spaces that we're aware of many people with different abilities have challenges. And even just the process of going from that urgent acute hospital stay, getting to rehab, all the different transitions of home and job life, I think are all things that we're all going to be able to relate to. So Kristen Aguirre is a journalist who's been working around the country. When she had her stroke she was in Denver. And we were honored to have her join us on the podcast as she continues to work to bring more awareness for others about risks of stroke and stroke illnesses and also her disability advocacy work. I hope you all enjoyed the episode.
[Spanish 00:04:30] and welcome back to the Brain & Life Podcast. Today I'm joined by a guest that really has been quite inspirational to many people, particularly if you are from the Denver or Colorado area, you may know her name or heard some about her story, but we're glad to bring her story and perspective to all of our listeners. Our guest, Kristen Aguirre is an Emmy nominated storyteller and journalist, and now also a motivational speaker, stroke disorders and disability advocate. Because she is also a young stroke survivor. In 2019, she had an ischemic stroke that suddenly caused weakness and limited movement throughout the left side of her body. And she has been finding her way and voice in our community to help bring awareness and more advocacy for both those living with stroke and other disabilities. Thank you so much, Kristen, for joining us here today.

Kristen Aguirre:
Thank you, doctor. I'm super excited to be here and have this conversation with you today.

Dr. Correa:
So let's go back, before all that stuff. Who is Kristen Aguirre?

Kristen Aguirre:
Yeah, so I grew up on the South Side of Chicago. I would like to say I loved where I grew up, a little rough around the edges, but my parents really put education first for my sisters and I. And so I went to undergrad and that's where I found the love for journalism and was in every club. Like, Kristen's a real hustler, busy all the time, real chatterbox. And then I really wanted to go into newspaper writing, but then I graduated in '09 when the recession hit, and I mean I couldn't get a job anywhere and ended up landing a unpaid internship at FOX Chicago. I never even thought about TV because at the time I just didn't really see a lot of Latinas on TV. But I ended up getting the internship there and I remember my first day there, I was like, "I could do this."
And I had a really amazing mentor and she had suggested, "Hey, why don't you go back to grad school so you can learn how to write for TV and then learn how to use the equipment." So then I went to DePaul University and I got my master's degree there. And then got my first job out of there in Quincy, Illinois, a really small TV market. But it was so amazing. And then I just started climbing the ladder from there. And then at the height of my career, I was an anchor in Denver. And it was amazing and I loved it. And then that's where everything really kind of hit the fan for me.

Dr. Correa:
So you knew early on that you wanted to get into journalism and storytelling, but you thought more from a written perspective. Were there other aspects about your childhood that really drew you to telling other people's stories and telling the stories of the communities around us?

Kristen Aguirre:
I have always been the storyteller. I'm such a chatterbox. I love talking. I love connecting with people. I love hearing people's stories. And it really was, I would say in grad school, and that that's when I really learned the impact of sharing people's stories. I mean, so much of journalism right now, people watch the news... I mean, there are people who I'd hear, they're like, "Oh, I don't watch the news at all. It's so depressing." And I think that's sad because there's so much more than just current events. I really focused my kind of journalism on storytelling and telling the stories of our community.
My recent Emmy nomination was for a series I did called West Michigan Warriors, where we focus on people here in the community overcoming something, a tragedy in their life. I mean, it could be a single mom putting herself through college. I did a little boy who was born with a heart defect and is now thriving. A minority woman who had a terrible pregnancy and labor and delivery story. And so she decided to open up a free doula place and to help women of color make sure that they had positive labor and delivery stories. So it really could be anything. And I feel like people want to hear that, those kind of things. And that's really how I fell in love with journalism.

Dr. Correa:
And you were in Denver for a while. It seems like, as you say, it was the place that you found a space and a voice on TV. Is there some specific story from your time in Denver that really helps, that you go back to in thinking about your connection and the positive experience of that time?

Kristen Aguirre:
I feel like Denver really taught me... I'm Latina. I love being Latina. And I really connected with the Latina community there. We had a group called [inaudible 00:09:07] where every Friday we would meet. Women of all generations, all backgrounds would come together and we just kind of talk and have coffee. And that's kind of where I got my best story ideas. Because I was just sitting around a table of other women who didn't all live in the same neighborhoods and we're all experiencing life in different ways and things that were impacting them. And I would be able to walk into work with three pitches like, "Oh, I heard this was going on in Arvada. Someone said so-and-so, they had this issue in Alameda." And I just really love that community aspect, and that's really where I learned... Denver is where I learned really all of that.

Dr. Correa:
So you were getting yourself known in the community, bringing the perspectives and the stories of the community forward to the viewership there in Denver. And then what happened? What do you remember about that day that changed so much for you?

Kristen Aguirre:
Yeah, I actually remember a lot. Like I said, I was always a go, go, kind of person. Hustling. And that morning of my stroke, I actually hosted a Latina event and I helped MC an event for... We were raising money. I can't even remember exactly for what. And then I even went to a spin class because I mean... I was 30, so I was really hustling and I was going to spin classes like 5:00 AM every morning and then continued on, went to the event. And then I was really, really close with my team, my co-anchors and I were best friends. And I was tired, and I was like, "Okay." I didn't have to report into the newsroom until 2:30. So I was like, "Cool, I'll take a quick little nap and then I'll head into work." I mean, I've done that plenty of times.
And that nap that I thought was 20 minutes ended up being a couple hours and I missed my show. And my team was like, "Something is not right. There's no way Kristen would be a no show, no call." They know I would call and say, "Hey, I'm sick." Or something. I remembered getting a little bit of a migraine and I've had them in the past, but usually blackout curtains, a quick nap and a snack takes care of it. And I did that, but nothing really happened. But I do remember feeling like I had to throw up and I couldn't. And I felt like something was wrong. But I think when you're in that moment, you're kind of afraid to admit, "Okay, maybe something really is wrong and I need to call 911." Because what if it's nothing? I remember thinking that way, "Oh, embarrassing. Oh, they're going to show up to the news anchor's house because she had a little migraine."
And so I just thought, we'll take the nap. And then the next thing I know, I wake up to my boyfriend at the time banging on the door. And he was like, "Hey, get up. Are you okay? What's going on in there?" And I was really embarrassed. He was banging on the door. And so I yelled at him to shut up, and I looked at the time and it was almost seven o'clock. And I was like, "What?" I was so confused. I didn't know what was going on. And when I went to sit up to answer the door and get off the bed, I couldn't move my left side. So when I tried to stand up, I fell and I hit my head on the dresser. And then I must have passed out again for a little bit. And I woke up again to Darren banging on the door.
Because my coworkers were like, "Hey, you should go check on her. Something is not right." And thankfully, eventually he ended up calling my sister and was like, "Hey, have you talked to Kristen? She's not answering the door. Is this something..." We had just started dating too. So this poor man. He's like, "Is this something she would normally do?" And my sister, rightfully so, if you have a sister you know, she was like, "Well, what did you do to her?" He's like, "I promise, I didn't do anything." And so then she hung up with him and called me. And I just feel like your instinct is people you love, not scare them. And I'm like, "Yeah, yeah, yeah, I'm fine." Because I felt fine. I didn't feel blurry or anything.

Dr. Correa:
So this is you answering the phone on the floor?

Kristen Aguirre:
Yeah, I'm answering the... I remember putting my hand up, reaching for my phone that was on the dresser and answering it. I'm like, "I'm fine, Kate. Everything is fine." But then she's like, "Okay, well, then just get up and answer the door. What are you doing?" So I went to sit up and I couldn't. And that's because the doctors think I already had the stroke during my nap. So when I went to sit up, I couldn't. And that was the first time that I was like, "Okay, something is really not right here." And then your brain is going so fast because you're like, "Okay. Well, what could possibly be wrong?" There's no way I'm thinking as a 30-year-old, healthy, "Oh, I had a stroke." Or, "I'm paralyzed." It's just maybe I pulled something. I don't know. So then I ended up yelling to Darren, "Yeah, something is wrong, call the ambulance."
And then he ended up calling the ambulance. And they came. And even the first responders were checking all my vitals and doing the, "Squeeze my hand." And by that time I could not use my left hand and couldn't squeeze it. And they're like, "Come on, you can do it." And I could see in their face, okay, they were a little worried. That's kind of it. And then I get loaded in the ambulance and then we go to Denver Health and I was in the ICU for a few days. And then they ended up transferring me to rehab hospital and the next five months was just trying to get my life back together.

Dr. Correa:
So there's some important things that happen in the short instance of when you're coming to the hospital and the ambulance gets you there. When you got to the hospital, was there a discussion about you getting a medicine to try to clear up the blockage that you had or getting a procedure where they pass a wire or a catheter to try to do that? And how did that discussion and those choices go for you?

Kristen Aguirre:
So from what I remember, this part is where it gets a little blurry, because I remember everything, getting into the ambulance, Darren getting in the ambulance with me, talking to the first responder. And I'm very, very close with my faith and I feel like God put little things in this path to tell me it's going to be okay. Never once did he say this was going to be easy, but he said it's going to be okay. The first responder, her name was Caitlin, and I feel like that's my sister's name. So right off the bat, I felt like there was a little bit at ease. Because just it was a familiar name that makes me feel good. But when we get to the hospital, I think she was like... They initially thought I was having some sort of... It was some sort of migraine that presents the same as a stroke.

Dr. Correa:
There's something called a hemiplegic migraine that you get weak all on one side. Yeah.

Kristen Aguirre:
Okay. So they initially had said that. And then that's when they started running the test. But they did talk about giving me a certain shot to, like you said, bust the clot that was there. But I think I had a bruise on my head from fainting or whatever, and hitting my head on my dresser. So they were afraid that I had some bleed... Like hemorrhagic for bleeding from there. So they decided not to.

Dr. Correa:
When some people have a very significant stroke affecting a large area of the brain where there's swelling as you described, you might end up going to the intensive care unit or the ICU to get monitored, make sure things are stable. What's your recollection of that experience? Because there's a lot going on there. And for our listeners, we've had a previous episode talking with an ICU doctor about all the kinds of decisions that might happen in the ICU, but I want to hear from you, what was that experience?

Kristen Aguirre:
I was really hungry because they wouldn't feed me. And I was scared because I mean, my whole team had come there. They even left the station. The meteorologist at the time, who's still in Denver, Danielle, is one of my very best friends. She was at... I believe she was working an event and was at an award show, but left that show and showed up to the ICU in a gold jumpsuit. And I remember looking at her, I'm like, "What are you wearing?" And she was like, "She's fine. She's insulting me. Everything is fine."
So I had my Denver family there, which was great. But for me, I really needed my parents there. And so they had already called my parents and by the time they came in, I believe it was after midnight. And they had already ran all of the tests and the MRI to confirm that I did have a stroke. But to me, it was all moving so fast, right? Friends were coming in and out of the waiting room and they kept asking me what I wanted to do, but really at that point I didn't know what was going on. And I'm thankful they were there. But really when my parents came, that's when I felt like a sigh of relief because I knew my dad would answer or ask all the questions. And my mom would be there holding my hand. The ICU to me is just like where chaos ensues.

Dr. Correa:
Yeah. I mean, it's a lot of chaos working to prevent chaos.

Kristen Aguirre:
Totally.

Dr. Correa:
So on their end, they're working as much as they can to make it organized. But yeah, I mean, it's an intense place and a lot of decisions are happening. So yes, I can imagine that relief of when you have people that you know and love and care for, but also you feel their assurance of them being there to help make decisions. When it came to that point where it was clear and they told you, they took the extra pictures that they saw that there was a stroke and it wasn't this other type of migraine that might go away, did that change for you some perspective and understanding of what you had and what you were going to be living with?

Kristen Aguirre:
Kind of and kind of not. What's weird is that I had been... Worked for years. I had been partnering with American Heart Association. I would MC a lot of their... Everywhere I worked at the time, would MC the Heart Association events. So I was very familiar with the signs of strokes and the stories of women overcoming things. I did a lot of stories around Go Red. But even with all of my knowledge, I still did not know I was having a stroke. And I think that's because a lot of women are just the way I was thinking, "There's no way this is happening to me. Not me." And I think one of my big messages is that stroke can happen to anyone. You're never too young. It can happen to you. And I think still being more aware of the signs, BE FAST, are great ways to stay ahead. And just don't be... What's the worst thing that can happen?
Okay, you call the ambulance, and that's maybe a little bit embarrassing, but what if something is wrong? They're on hand. So when they did initially tell me that it's a stroke, it didn't really set in until doctors started coming in and telling me, "Hey, paralysis is not going to... You're paralyzed on your entire left side." And I think as a... I don't mean to sound vain, but as a woman, I had a little bit of facial drooping on my left side. That's probably what I was most worried about. Because I felt like I always knew I would get back on air and I was worried what that would look like. As far as the paralysis goes, yes, I was scared, but I feel like the Kristen that's in me, I'm always like, "Oh, I can do this. I can take it on." That doesn't mean I think it's going to be easy, but I feel like there's nothing I cannot take on, that I can't handle. And that's kind of the mentality I've kept through my whole journey.

Dr. Correa:
That's great. Yeah, I mean, so at that point you were not able to move your left side, you didn't have any sense of movement from all the way, whether it was your shoulder or hip down to your fingers and toes?

Kristen Aguirre:
Yeah, no, I couldn't move anything.

Dr. Correa:
And then as you described, you had a facial droop on your left side too.

Kristen Aguirre:
Yeah. I mean, I'm sure you can maybe sense my personality a little bit. Laughter has really helped my recovery. Sometimes I would pull my arm up and then drop it. I'm like, "Look, it's just dead to the world." And it's just that's kind of how my family and I got through. I'm pretty funny to begin with. And then that's just kind of what we kind of kept going with through. We would joke around about certain things. But so I had absolutely no movement and that's kind of where I had to adapt a little bit. I think my training as a journalist, breaking news, you're trained to adapt for anything. Because anything can happen at any moment during live TV. And to me, in my brain, I'm like, "Okay, we got to adapt right now. We can't use our left side. How are we going to put our pony? How are we going to do a ponytail? How are we going to dress?" And that's kind of what I learned all in rehab at the hospital.

Dr. Correa:
And in the hospital, the rehab doctors and the neurologists, they give you a sense of scope of where things might go when someone has paralysis or very significant weakness on one side, or in a part of their body either from a stroke or a spine injury. Sometimes how it can progress or improve or whether or not we expect it. Each person's different. And so we often encourage people, it's really still about how much they put into the recovery and rehab. And it's great to see. I mean, we're on an audio podcast, so not everybody here gets to see your full... And your smile. But you've had a lot of improvement. Probably most people wouldn't even notice any significant weakness on the left side of your face. It's just like the neurologist can pick up little... The funny things.

Kristen Aguirre:
Totally.

Dr. Correa:
And how are you feeling about the movement and your progress of the rehab of your left side when you went to... I believe you went to Craig Hospital, which is a rehab hospital.

Kristen Aguirre:
Yeah. In Denver. I feel great. I mean, I'm about five years out. And I still think some things are a little tough for me. My fine motor skills haven't quite come back. And again, I've just kind of adapted. When I look at the big picture of my recovery, I can work again. I mean, there are some people that never go back to work because of the way the stroke has impacted them. Sometimes I need help tying a dress or tying up a shoe or something. And I just don't wear a lot of gym shoes or I buy some without shoe laces. There's just little things I do to make myself feel normal, but I'm really, really proud of my recovery and all the work my... It's not just me either. All the work my family has done. My parents basically left Chicago, moved to Denver to go to rehab with me every day.
And I know not everybody has that support. And they really, really helped me and mattered. And then my team at Craig, I think I mentioned this when we met at the Brain Association, the first thing my physiatrist told me when I got to Craig was, "I'm never going to lie to you." And I love that. I want to be told what I'm up against. I've never had a doctor sugarcoat anything to me. And I love that about all the teams that I've had. Because I just want to know the truth. I don't need anybody to be nice to me. I mean, I want nice bedside manner, but you know what I'm saying. So he had said, "I'm never going to lie to you."
The first thing that came back from paralysis was my leg. And he had said that's pretty common. But my initial meeting, they kind of had said that, "You're probably going to need a wheelchair." Just because of where the stroke had hit my motor strip. And they were like, "You're probably going to need a wheelchair and you're going to probably have to wheel out of here for the rest of your life." But I thought, "What can I do on my end to help bring that connectivity back in my brain?" So I just told my team, I'm like, "Throw everything at me." Every time we did, whatever sort of rehab is available, I want to do it. Even if it's experimental, let's try it out. And so my leg was the first thing that came back and my doctor was like, "That's typical because we're constantly putting pressure on it."
But it took a really long time for my arm to come back. And I mean, we just so happen to have it on video. We would just tape to see how things were going. And my arm moved. And I remember my doctor had told me, he's like, "I didn't think that was ever going to come back." But we did so many things. We did mirror therapy. And they were like, "This isn't really proven, but it's kind of experimental. Do you want to try it?" We're like, "Let's do it." And we just did... I just felt like we threw everything we could at it.

Dr. Correa:
Yeah. I mean, it's great. And we'd love to see people show us as the doctors, even when we don't expect improvement, that their story, their individual health and different background and situation, that things were able to remake those connections. We're often limited by the scope and the ranges that we've seen and observed over time. But it's great to hear that. At this point, do you feel like you are a done product or are you continuing to adapt and evolve as the new Kristen?

Kristen Aguirre:
No, I don't think recovery ever ends. I think I'll be recovering forever. And I think that's not even just because I had a stroke. That's just life, right? Right now I'm expecting a baby, and I just started following...

Dr. Correa:
Congratulations.

Kristen Aguirre:
Thank you. I just started following, it's called One-Handed Mom-ing on YouTube. And she has a hemiplegia like I do. She has far less movement than I do, but she has tips on how to... I was really worried like, "Oh, my God. How am I going to take care of this kid? My arm isn't strong." I have an amazing partner that will help with whatever, but I know I can do it. It's just going to take time for me to get into my groove. And so I think that's just again, adapting, adapting, adapting.

Dr. Correa:
Well, I think that's the thing always to remember though, is that we're always still adaptable. Even if you're at the point where the connections, spinal cord nerves, brain, is maybe now at a point where you're not necessarily going to heal or you may not... That muscle may not necessarily get a lot stronger. You can still adapt how you use your combinations of muscles and your movements to be able to do more things. So I think that's often a thing. But each day, when you start the day, how do you find that persistence to keep choosing to move forward?

Kristen Aguirre:
It's hard. I have good... I would love to say I'm positive every day like, "Oh, this is great." I mean, it's hard. I think after my stroke, I also struggled with anxiety and depression, something I never struggled with before, but I've learned it's pretty common with stroke survivors and how it impacts the brain. So for me, I do a daily devotional. My brain really loves routine, so I just know what I need to do to make sure Kristen feels her best. So I keep that positive mentality. But when I do have a bad day, I just kind of lean into it. Because too much sun makes a desert. You're not going to have a beautiful day every day. I mean, I'm grateful for my life every day, but I was kind of rolling with the punches and every day's different.

Dr. Correa:
And already, when you were in the hospital, you said it yourself, you were thinking about how your face was going to look when you were back on the screen, back on TV and reporting. How has that transition been, finding a way to get back on screen?

Kristen Aguirre:
Well, it was rough for sure. So I got out of the hospital in June. And again, I just was like, another way I had to adapt is that my energy level is not the same as it was before. And I had to learn that kind of the hard way. Because I would keep pushing myself because I wanted to get back to the old version of me. And I say that with air quotes, because I just feel there is no old and new.
It's just that's who I was and I am who I am now. And frankly, I mean, I kind of love this version of myself. I think I'm a little bit softer and I kind of know my boundaries a little bit. But even with my family, I've had to be like, "Okay, I need to schedule a nap in today, because that's just what my body needs now." And as far as getting back on TV, it was hard. I was really trying to push myself to turn stories again. And I can do it, and I did make deadline, but it's just for my station in Denver, it ended up not being enough. So I went back in November and then we parted ways that following March, about a year after my stroke happened.

Dr. Correa:
I think many people have different types of disabilities from different causes have a lot of challenges that they encounter with discrimination from their movement, either by the way they look or the way they're moving around, it may not actually end up impacting your job. And I could see how that might be something that could affect a news job, like a news anchor.

Kristen Aguirre:
Oh, yeah, for sure. I think I had a manager review, because I did practice runs, that said something like I looked, I stared into the camera weird. And I mean, I'm a very outspoken person. I didn't think that, but I just was trying... I was just worried about keeping my job and frankly just keeping health insurance. We parted ways and I think that was the best thing for me to go was to leave and start anew. And I think one of the things that really impacted me now as a person with a disability is, I felt like I couldn't make a mistake, because they would always be like, "Oh, that's her stroke showing." Or something. You know what I mean? So I was super, super hard on myself. And that's really where therapy for me helped me kind of overcome that. Before my stroke, if I made a mistake, we'd laugh it off, we'd keep it moving, and I wouldn't think anything about it.
But now when I made a mistake, I felt like all the eyes were on me. And they were like, "Oh, my God. She can't read. It's because of her stroke." And no, it could be, maybe I'm just tired. I'm having an off day. You can't be on every day. So that's where I felt things were a little bit different for me. And it's different for people with disabilities. People view us I think as, "Oh, so sad. Look at them." When we're strong and a lot of us have disability pride and we're overcoming so many obstacles just to have a normal day,

Dr. Correa:
Sometimes stronger just to get here to the same place. And as you prepared yourself for interviewing and looking at new opportunities to tell and show the news, was there something that you had to do for yourself because those other people weren't going to know who you were and who you are now, and then they were also going to be interpreting and judging all the different things that you're talking about'

Kristen Aguirre:
So I kind of took the summer off. And then when the fall hit, I felt like it wasn't quite a year yet, but I had felt like I was ready. I could handle it. I was ready to get back. I was antsy to get in front of the camera and tell stories again. It's when George Floyd happened and I saw so much coverage and I had so many ideas, and that's when I felt like we're ready. So I called my agent and she's like, "All right, well, let's start putting feelers out there." And then we ended up in Asheville, North Carolina. And I had the best news director there. What is so crazy, is that the person, the weekend anchor I was replacing, he actually had a brain injury from a fall years ago and then came back to... That was his first job back after recovery. So the first call I had with Brian, my news director at the time was like, "Just so you know, we're really familiar with brain injury."
And I was like, "What?" And then he told me that story and he was just such a great person to work with, really patient. I mean, by that time I was meeting, hitting all my deadlines and I knew I could do this job again. And they really lifted my confidence there. And so I went back there and we were there for about a year and a half. And I just really missed the Midwest. I love the Midwest people. We're just a totally different brand of people. And so we're like, okay, I met my husband in Asheville. And I was like, "I kind of want to go back home." And he's like, "All right, let's do it." And then we found this job in Kalamazoo and now we're here.

Dr. Correa:
That's great. I mean, it sounds like particularly you were drawn and found connections to people who understood, saw you and valued the perspective you bring. And that weren't somehow discounting your value and what you brought.

Kristen Aguirre:
Exactly. And I feel like people with disabilities have so much value. I mean, I had so many ideas because of what happened to me on storytelling, and that's how I launched the series here in Kalamazoo. And I just feel like if you take the time to hear the story and what we bring to the table, you will be... I mean, I'm not surprised every time I talk to somebody like, "Oh, they have great ideas." And I now work for a disability, a nonprofit where we really advocate for accessibility, inclusivity, and I feel like I'm doing amazing work here and I love the people we work with. And we're really important. We have a voice and we matter.

Dr. Correa:
So Kristen, if our listeners want to hear and see you and your work and hear these stories, where can they go to find more about you and the work you're doing?

Kristen Aguirre:
So I'm super active on social media, especially Instagram. And it's just my name, Kristen Aguirre, on every social media platform. Right now I'm really kind of open about... Because pregnancy even looks different for me because of what happened. I have to be on certain blood thinners, or I have to get injections every night. And this isn't necessarily the pregnancy that I thought I would have, but it's the one that I need to keep us healthy. And that's fine. But even after [inaudible 00:34:36] you think you're done with recovery, there's still other things that pop up in your life. Like we were saying, just adapting.

Dr. Correa:
Well, thank you so much, Kristen, for sharing and taking that time with us and our listeners. And I really do wish you and your husband and your growing family all the best and look forward to seeing more of your stories.

Kristen Aguirre:
Thank you so much. I had such a great time. Thanks for inviting us on here.

Dr. Correa:
Can't get enough of the Brain & Life Podcast? Keep the conversation going on social media when you follow @neurodrcorrea and @brainandlifemag, or visit brainandlife.org.
Welcome back to the Brain & Life Podcast. And this week I am so happy to welcome back Dr. Sarah Song. Now, many of you may recognize her from our discussions about stroke in our past episodes with Timothy Omundson and Bradley Rose. And you may also have noticed that she is on the editorial board for the Brain and Life Magazine. And may have seen her even on NBC News or the American Heart Association's coverage about stroke rates in Asian Americans. But we're glad to have her back here with us to talk about another stroke topic that's important for all of us to understand. Sarah, once again, thank you for joining us.

Dr. Song:
Thank you so much for having me. I'm delighted to be here.

Dr. Correa:
So we had a really frank and open discussion with Kristen about her history and experience with a stroke back in 2019. She was just 31.

Dr. Song:
Wow, wow.

Dr. Correa:
and I mean, such a shock and change. She went from one day being on air in Denver as a journalist, and then all of a sudden she started having problems and couldn't get out of bed, thought she just was tired and for some reason was weird and had a headache and not strong on one side. And couldn't get out of bed. And then her colleagues at work were calling family members and her boyfriend, because this was totally not like her to not show up to be on air, and went through this whole thing of EMS trying to get into her apartment. And then getting to the hospital and figuring out and finding out that she had had a stroke and what that was going to mean for her life.

Dr. Song:
Honestly, it's not... We've been seeing so many more young people having strokes, especially previously healthy people having strokes. Yeah. That must've been really awful for her.

Dr. Correa:
And why do you think that is? Is it just that we're doing such a good job about educating everybody now about stroke and more younger people are coming into the hospital? Do you think there are some aspects changing in our own health, the community's health that are resulting in more individuals at a younger age coming in with stroke?

Dr. Song:
So you've already named a couple of really important factors. I think that public education is at an all-time high. People can typically recognize the symptoms of stroke from FAST, face, arm, speech, and time. Where they identify some of the key stroke symptoms. And they're reaching younger and younger people. There's really innovative programs out there to teach children, older adults, people of all ages what stroke looks like and how to get to the hospital quickly.
I think that there's also a changing risk factor profile. I think that a lot of the more traditional cardiovascular risk factors for strokes such as high blood pressure, high cholesterol, diabetes, these types of risk factors are being seen early and earlier in people. So we are seeing a lot of people who are young who seem fit on the outside coming in with strokes. A lot of young people also don't have primary care doctors, so they're not seeing a doctor regularly to understand what their risk looks like. And they may not know, for example, that they have high blood pressure, which is called the silent killer for a reason because typically people have no symptoms from it.

Dr. Correa:
So just some of these situations are conditions that you don't really end up noticing until there's already damage occurring.

Dr. Song:
That's right. That's right. It's a shame.

Dr. Correa:
And Kristen herself admitted that she had been part of public education efforts to help people understand and learn more about stroke as a journalist. But when it came to her own symptoms, that her immediate thought was not that these were symptoms of stroke. She downplayed the possibility of it being something more serious. She'd had a history of some headaches and migraines and was kind of thinking and explaining that away. And she pointed out that there are both cultural communities and women sometimes may downplay their symptoms and leads to later presentation to the hospital or coming in after more time has passed. How do you approach that in talking and educating our listeners, but also the families and people that you help care for about this and the importance of really getting to the hospital as early as possible?

Dr. Song:
It's so true that when... I think that when I've talked to my patients, they can't really believe what's happening is happening. And a lot of times it's... I think all the time maybe it's very frightening because you don't really know what's going on. And you are sort of able to talk yourself out of maybe going to the emergency room or calling 911, for example. And I think that when that happens, especially as somebody who's very young, it's very shocking when somebody who's young and healthy or healthy appearing or actually healthy has a stroke. It's very scary and very frightening. But it is really important to get to the hospital as soon as possible when you suspect stroke symptoms. And I hope that that message is clear.

Dr. Correa:
Yeah. One of the challenges I know that all of us encounter, but I experienced it even this morning working in the hospital, is when we're talking with someone who has recently had a stroke, we know from the pictures and the MRIs where the stroke is. And some of the symptoms that may be involved. But really having a clear sense of expectations about what limitations and challenges that they're going to have, how do you help people navigate that? We know if they're currently having really significant weakness or inability to move one side, but how do you give them a sense of what's going to be better in the coming weeks and months and the potential range of possibilities for their functional status?

Dr. Song:
I think there's a really wide range on how people respond to therapy. In general the thinking is that if you're younger, you're able to recover likely more. And definitely in the first couple of weeks, absolutely in the first six months, but all the way up to 18 months and perhaps even beyond. I recently had a patient who over two years after their stroke was still getting function back in their hand and their fingers.

Dr. Correa:
That's wonderful.

Dr. Song:
Yeah, it was wonderful. And I think that we have these sort of traditional ideas of, "Well, if you're not at this point at six months, if you're not here at 18 months, this may be where you sit." But I think that we're learning and rehab therapies are developing that this can actually be extended. I always think that therapy is sort of very multifaceted. So there's the physical aspect of it.
But then I think there's also the emotional aspect of it. Having the right support around you as you go through therapy, whether that's physical, somebody being able to drive you to the therapy or having them come to your home. And I think the emotional aspect, being there for you on your good days and your bad days, because inevitably there will be some bad days. And I think that what I focus on with my patients is a best fit line. So every day is a little bit worse, maybe a little bit better, a little bit worse, a little bit better. But overall, if you look back one week, two weeks, two months, you can see that the best fit line or the actual trajectory is actually getting much better. And I think keeping people aware of what's happening in the moment, but also looking at the larger picture and having the support to look at that larger picture with them is really key.

Dr. Correa:
You mentioned there the emotional support, and some people hear therapy and they think of the physical therapy, the exercise, or the occupational therapist who's helping you with the function of your hands and little fine motor tasks. But other people hear therapy and they think of the psychiatric therapist and the psychotherapist. And there is a reality that with strokes there can be a substantial impact in your mood, anxiety, depression. How do you talk about that with individuals after their stroke so they can manage and have an understanding of what to expect in that perspective?

Dr. Song:
I think that that's a really important topic and a really important area for post-stroke care, to address the emotional impact that a stroke has. And I talk about like it's a trauma. And I say, sort of after having a stroke, it's almost like having post-traumatic stress disorder. Not in those exact terms of the definition of, but it really feels like something that happened where there's a before and there's an after. And understanding that you are forever changed is important. And I think that all stroke survivors feel that. And I think that it's especially pertinent for people who look really good on the outside. So ironically, the people who suffer from stroke, but they actually have very little physical disability, for example. Because it may be very difficult for them to talk about how they're tired or how they're feeling down or how they don't have the energy to do things that they used to do because they've had a stroke and they have a scar in their brain.
So for these people, I always tell them, "Make sure you talk to your family. Make sure that you give yourself a break. Be kind to yourself. Know that when you go into a crowd, you might feel overwhelmed. Know that if you're talking in a group that you might feel like you don't understand all the conversation happening at the same time and you need a little bit more one-on-one time, for example, to regroup."
I think that those people feel like because they look so good on the outside, they may not feel like they have the right to complain, but I say, "Your life is forever changed. You are different. Your brain is wired differently now. And so you need to sort of be gentle with yourself and accept that you're going to take some time to look better on the inside." And I also think that stroke is such a scary thing, and whenever people recover from stroke, everybody else around them is so relieved and so glad that they look good and they look okay. And perhaps they're not dragging a leg or they're able to speak properly without any slurring of their speech.
So then they downplay the incident. They say, "Oh, stroke is no big deal. Look at you, you look great." And the last thing that person wants to do is say, "Wait a minute, I'm actually not a 100%. I actually don't feel as good as I look on the outside as on the inside." So I say, "Just speak up. Talk to people you trust, who you can tell that you're... Even though you look good, it doesn't mean that absolutely everything is just fixed and gone."

Dr. Correa:
Yeah, no. I mean, that is a helpful context. And it's unfortunate sometimes that people feel isolated and alone in that they're having these mood changes or this stress and anxiety about their condition, about their symptoms. But that they don't realize or someone hasn't helped them understand that it's clearly a part of the stroke. And something that should also be worked on and supported and managed for them, and that it also can get better.

Dr. Song:
Yes, yes, it can. And there was a trial called the FLAME trial, which actually looked at an antidepressant being given for recovery after stroke. And although the information may not be completely up-to-date on that, there may be some evidence that taking an antidepressant can actually help improve functional outcome beyond just improving your mood. So that's something that I also encourage people to consider it for a short time, perhaps taking a medication that can help them do better at rehab or do better at therapy and just give it their all, and sort of help their motivation while they're going through this really difficult intense period of therapy.

Dr. Correa:
Now, Kristen shared with us that she received months of rehab therapy at a rehab center in Denver called Craig Rehabilitation Center. It is a type of center that we refer to in the hospital settings as acute rehab facilities, where people go for hours of therapy a day. And they can be there a while. How often are you sending people to acute rehab facilities and how do you talk with them to help them understand its role and how that's going to help them as opposed to going home and doing some therapy at home or working at an outpatient rehab facility?

Dr. Song:
So we always push for our patients to get the absolute highest level of rehabilitation that they can get. Acute rehabilitation is the highest, most intensive level of therapy, and it requires you to undergo three hours worth of therapy a day. So we push our patients to try to get there. Because we know that the more therapy they can receive, the more intensive therapy they can receive early on, the more likely they are to improve over time, in the short term and in the long term. Obviously, not every patient is either alert enough or able to undergo that level of intensive therapy, in which case they would get downgraded to subacute therapy or subacute rehab. And that's also an option, but it just means that they're not going to get that higher level of intensive therapy that can be so effective early on.

Dr. Correa:
And a big part of Kristen's improvement over time was not just those hours and time with the therapist, but even while she was in hospital at Craig in the acute rehab facility and then going home, the fact that she had family members working with her and that she was pushing herself to do more of the therapy and the exercises on her own. How important is that to see really a difference in how someone improves after a stroke, whether they're young or older?

Dr. Song:
I think having family support or the support of loved ones is so critical to the success of therapy. Even in the stroke clinic, outpatient setting, I see patients come in and they have a big family, or they have somebody who's been by their side throughout the whole thing, encouraging them. We talked a little bit about how you may not be able to see the difference day to day, but when you look back, you can really see the improvement that you've made. I think having a witness with you is really important to sort of say, "You know what? You are so much better than you were a week ago." A month ago, two months ago. I think that having that support is just invaluable. And unfortunately when it's not there, it can be very hard to see that somebody is fighting through this by themselves and fighting through it on their own, and it's hard to stay motivated if you're not feeling at your best yourself.

Dr. Correa:
The challenge of the functional changes that they've had and reapproaching who they are and their functional level is so much, and there's so much uncertainty in that. But Kristen added to that, that beyond all that as she got better, she started to consider planning a family.

Dr. Song:
That's awesome.

Dr. Correa:
And it seems like...

Dr. Song:
That's awesome.

Dr. Correa:
It's wonderful.

Dr. Song:
Yeah.

Dr. Correa:
And it's great. The challenge I wonder is, she's already navigated this uncertainty about whether or not she would have another stroke and how she was going to improve. How do you help family members when they're thinking of family planning, when they've had a stroke that we don't yet know the cause, or what we refer to as a cryptogenic stroke because she was a 31-year-old woman and she's not had an identified cause for her stroke.

Dr. Song:
I've had multiple patients with cryptogenic stroke go on to have babies, and I love hearing about it.

Dr. Correa:
That's wonderful.

Dr. Song:
And I think that as physicians, our job is to make sure that every available possible source of stroke has been looked at and ruled out as much as possible. So that means looking at the blood to see if there's a clotting problem or a genetic condition that might make the blood thicker than usual. Looking at the heart to make sure that the functioning of it is good, the pumping, the valves, any abnormal connections between the right and the left side of the heart, we're managing that appropriately.
Looking at the blood vessels to see whether they're stretchier than usual or prone to any sort of injury. Making sure that we manage all these factors before saying, "You know what? You have to live your life. You have to go on and do what you want to do, and don't let this stroke stop you." Obviously, referring to the higher risk [inaudible 00:53:07] and staying on something like aspirin or anti-platelet medication that could help reduce your risk of stroke would be important. If it's possible to stay on one of those medications, we do recommend that. And of course, making sure that other vascular risk factors like diabetes or high blood pressure are very carefully monitored and managed.

Dr. Correa:
Well, it's great to hear that you've seen so many families and individuals push forward and be successful and grow loving families. And speaking of that support and a different kind of journey, Kristen, really a big part of our discussion was talking about how she has navigated returning to work. Not only just her own challenges of getting around the spaces of the world around us when she has some mobility limitations, but then the expectations and some misunderstanding about what it is for someone with a disability and their protections to be able to work.

Dr. Song:
I think this is a really important aspect of what happens after you have a stroke. You really have to be open with your employer about what's happening with you. And hopefully you have a supportive employer who will understand that, again, even though you look great on the outside, it doesn't mean that you're functioning exactly the same as you were before the stroke, right?
So I always encourage people to be open, talk about it as much as possible, be very honest about their expectations, about what they can and can't handle. Even if they're looking like they're raring to go, they want to get back to work, I say, "You know what? Maybe take a little bit of time off at the end of the day. Don't go back a 100%. Maybe give yourself some leeway in your work hours or manage those expectations upfront so that you don't feel overwhelmed at the end of the day." Because the last thing you want to do is regret going back to work too soon or too hard because you don't want to feel like you're failing when actually you're doing an awesome job. You've gone back to work. So take that first step and just take it slow.

Dr. Correa:
That's helpful. And Kristen shared that what she ended up finding was, as she started looking for a new position, she was actually able to connect with a production director and a journalistic team that had had previous experience with someone else on their team having a disability. And really right up front, as you said, they had understandable and managed expectations and valued the perspective that she was going to bring. And I think that's a great possibility. It's frustrating and challenging that someone may end up having to leave the position that they have, but then there's the potential of you might actually find someone that really values all that you bring and the qualities that you bring, not just in your skills, but that unique perspective to the community.

Dr. Song:
Yeah, that's absolutely wonderful. I think that the world of stroke survivors is a unique one. Because I think that stroke survivors really understand each other. And I think that that's something... I, as a physician, am an outsider too. But there's an understanding and an empathy that comes with having suffered a stroke, that only a stroke survivor can understand. That sort of sudden change of life and everything that it entails, whether it be our work, our family, our relationships. And going through that experience is for a lack of a better word, really life changing. So I think that if she was able to find people who understood that or had worked with people like that, I think that's really exceptional and wonderful.

Dr. Correa:
Well, Sarah, once again, it's been wonderful getting a chance to talk with you, to really get some time to reflect about our interview with Kristen. And thank you again for so much for all that you do for your community there in Chicago and the broader community living with stroke.

Dr. Song:
Well, thank you so much for having me, and thank you for all that you do to share all your expertise with the world.

Dr. Correa:
Thank you again for joining us today on The Brain & Life Podcast. Follow and subscribe to this podcast so you don't miss our weekly episodes. You can also sign up to receive the Brain and Life Magazine for free at brainandlife.org. Don't forget about Brain & Life in Espanol.

Dr. Peters:
Also, for each episode, you can find out how to connect with our team and our guests along with great resources in our show notes. We love it when we hear your ideas or questions. You can send these in an email to BLpodcast@brainandlife.org. And leave us a message at 612-928-6206.

Dr. Correa:
You can also find that information in our show notes, and you can follow Kathy and me and the Brain and Life Magazine on many of your preferred social media channels. We are your hosts, Dr. Daniel Correa, connecting with you from New York City and online @neurodrcorrea.

Dr. Peters:
And Dr. Katy Peters joining you from Durham, North Carolina and online @katypetersmdphd.

Dr. Correa:
Most importantly, thank you and all of our community members that trust us with their health and everyone living with neurologic conditions.

Dr. Peters:
We hope together we can take steps to better brain health and each thrive with our own abilities every day.

Dr. Correa:
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Strokes in Younger Patients with Journalist Kristen Aguirre

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