Blood Pressure Basics For Stroke Prevention And Recovery With Dr Rachel Forman

Dr. Rachel Forman is a stroke neurologist at Yale School of Medicine. She treats stroke, researches it, and takes that knowledge into communities through Stamp Out Stroke -- sixty-plus events and counting. She recommends this podcast to her patients.

In this conversation: blood pressure and why most people do not know they have a problem until something goes wrong. Why only one in five stroke survivors check their blood pressure correctly. The discharge cliff. Secondary stroke prevention and why finding the cause of your first stroke changes everything. Post-stroke depression as a clinical condition that worsens outcomes. The mental health gap for survivors with aphasia. Equity in stroke research and care. And the Smart Cookie: the one thing Dr. Forman would change about stroke care right now.

Brain Friends: the podcast Every episode delivers stroke and aphasia science you can actually use. Hosted by Angie Cauthorn -- stroke survivor, aphasia advocate, and founder of ROSA, Resource Orientation for Stroke and Aphasia.

Health education only. Not personal medical advice. Mental health crisis support: call or text 988.

Stamp Out Stroke -- Yale Stroke and Vascular Neurology https://medicine.yale.edu/neurology/excellence/stampoutstroke/

AHA Home Blood Pressure Monitoring Guidelines https://www.heart.org/en/health-topics/high-blood-pressure/understanding-blood-pressure-readings/monitoring-your-blood-pressure-at-home

Find a Validated Blood Pressure Monitor https://www.validatebp.org

SEQUINS -- Society for Equity Neuroscience https://www.s-equi-ns.org/

988 Suicide and Crisis Lifeline Call or text 988 https://988lifeline.org 

National Aphasia Synergy -- Peer Befriending Program Founded and led by people with aphasia. Trish Hambridge,  info@nationalaphasiasynergy.org 

https://aphasiaadvocates.com/ for Brain Friends Merch

https://aphasia.org/event/ask-the-expert-february-2026/

https://www.cognitiverecoverylab.com/seles

https://aphasia.org/stories/announcing-the-davetrina-seles-gadson-health-equity-grant-program/

Our beloved colleague, Dr. Davetrina Seles Gadson, passed away January 11, 2025. Dr. Gadson was an extraordinary speech-language pathologist and neuroscience researcher who devoted her energy to studying health disparities in aphasia recovery. She was a fierce advocate for improving services for individuals with aphasia, particularly Black Americans. Her research transformed our understanding of these health disparities and shed light on how we can address them. We were privileged to have Dr. Gadson as a cherished member of our lab community for four years, first as a postdoctoral fellow and then as an Instructor of Rehabilitation Medicine. She was still a close collaborator and friend to many of us at the time of her passing. Dr. Gadson was an incredible person—compassionate, inspiring, and full of life. Her dedication to advancing equity in aphasia recovery and her profound impact on our community will never be forgotten. ...

Transcript

Prevention Without Shame

SPEAKER_02 0:01

Hey brain friends. So the month of May carries like a lot of meaning for me. It's um Stroke of Mare Wearness Month. It's Dr. Celeste's birthday month, plus all her homies. So, you know, shout out to y'all. Y'all know what it is. And this week marked another stroke aversary of my own. Uh uh nine years I had my stroke. And so when I talk about prevention, I'm not talking about it from a distance. I care about prevention because I know what it feels like to sit in the aftermath of a stroke trying to make sense of something that changed in an instant, and also while you're all while you're sitting there trying to figure out when am I going back to work? What are the kids gonna eat for dinner? Where, you know, what are do I have the time off? Like these are the real problems that you're kind of sitting in there with. And again, you're also thinking, it's you know, what's going on at the job? Did Bob from accounting steal my chair? You know what I mean? We got real problems. We got real problems. So I know what it feels like when those conversations suddenly become about blood pressure, medications, and risk factors and lifestyle changes. You can't eat this, but you gotta eat that, and all of all those things, and while your mind is still processing exactly what has just happened to me. Like that ain't supposed to happen to me, that can happen to other people. So, for many survivors and uh care partners, prevention can feel like really overwhelming, and sometimes it even uh sounds like blame. Like somebody is saying you should have known better, uh, or you should have known this already. But I'm here to tell you it's not even the case. Prevention is not about shame, it is about understanding, it is about learning what numbers mean and why certain habits matter, and what steps can help reduce the risk of another crisis before it happens. This is why I care so much. This is why it matters and prevention matters so much, because we when we understand the why behind prevention, the meaning behind the numbers, and the steps in front of them, the steps in front of us, we can make better decisions. So today, my conversation with Dr. Rachel Foreman helps us with prevention, blood pressure. We're talking community education and information that people can actually use. And in the spirit of Dr. Dave Trina Seliz Gatson, we are keeping equity, access, and real life understanding at the center so we can continue to make this compli complicated stuff make sense. So, with all of that, I'm gonna say, let's get it.

SPEAKER_01 3:43

Welcome to Brain Friends, where two neural nerds talk all things aphasia, language recovery, culture, and community. I am Dr. Datrina Celeste Gatson, a clinical speech language pathologist and neuroscientist.

SPEAKER_02 3:56

And I am Angie Claw Thorne, stroke survivor and aphasia advocate.

SPEAKER_01 4:02

Welcome to our show. Welcome to Brain Friends. We want to thank all of our listeners for downloading the podcast. We appreciate everyone listening, so please tell a friend to tell a friend that we are here. And we are.

SPEAKER_04 4:35

Thank you, Angie, for having me, first and foremost. I think it's incredible what you've done. I'm such a big fan of you. I tell all my patients and their after visit summaries to check out your podcast. Thank you. So yeah, so thank you. Um, I'm a stroke neurologist at Yale, and I treat all types of strokes. Um, my biggest passion is supporting stroke survivors through their journey, whatever that may look like, and preventing stroke. So I do a lot of community work. I work with youth, try to teach them about how not to only recognize stroke symptoms, but also to learn healthier habits. Um, and yeah, it's it's been really rewarding um to do this type of work.

SPEAKER_02 5:20

Well, let me ask you this. Um all right, well, actually, I do have an icebreaker, and the icebreaker is on the clock with the commish. Okay, I'm the commish. Uh with uh the aphasia, uh, I'll give you a little background. So with the Aphasia, Ephasia, with Arch, which is the Ephasia Resource Collaboration Hub on the president and co-founder. Yeah. We have uh we have a fantasy football league. There's always uh a point where we talk sports and then it's like okay, okay, let's get to the meeting. And I'm like, well, why can't that be the meeting? Yeah, right. You know, that's great. So we start started uh the the AFFL, the Ephasia Fantasy Football League. I love that. And I'm the commission. Anyway, so my question to you, Dr. Foreman, is what is your for I'll go with prevention. So for prevention, what would be your starter? What is if you were drafting a uh recovery tool, what tool, what is your first one that you would pick?

SPEAKER_04 6:33

You threw me for a loop because I thought you were gonna ask me my favorite football team. Well, I mean, I go everything for me goes back to hypertension control. If if we're talking about secondary or primary stroke prevention, so preventing a first or recurrent stroke. Um, and then if we're thinking more about, you know, the recovery process for that would be depression and mental health. I think that is so overlooked. And it kills me that so many stroke survivors are discharged from the hospital and not educated or set up for that type of that depression, for instance, worsens stroke outcomes after someone has a stroke. So I think, you know, the blood pressure piece and mental health resources, if we, you know, for two starters.

SPEAKER_02 7:23

No, but no, I love that. I love that. Actually, it was so funny. I was uh thinking, how was I going to was I gonna do one starter? Because I literally came up with it like last week off the cuff. And I'm like, but I love that because it lets me know what my guest thinks is the most important.

SPEAKER_04 7:41

Yeah.

SPEAKER_02 7:42

And so you're saying hypertension and prevention.

SPEAKER_04 7:45

Yeah, I think if we're thinking about preventing another stroke or preventing a stroke in the first place, we have to think about hypertension because it really is a silent killer. People don't feel sick, they don't know they have it. I see so many feet people by the time they get to the hospital with their stroke, they have end stage disease, not just in the brain, but in their kidneys and their heart. And I mean, if we just knew to check blood pressure and the importance of this, we could prevent terrible outcomes and terrible disability.

What Blood Pressure Really Is

SPEAKER_02 8:15

Wow. Before we go any further, let me say this clearly. This podcast is for education and conversation only. This is not medical advice. I am not your doctor. Dr. Rachel is not your doctor, nurse, pharmacist, nor a health care provider. Please, please, please, please, do not change your medication, stop taking medications, start a new routine. Do not listen to Angie. This is this is the pretty much the the whole gist of the little break-in right here. Okay, write your questions down, learn your numbers, and then go talk to your health care provider. Do not don't don't text me. Okay, don't this is not the time to chat it up with Angie. This is about your health care plan with your doctor. So I just want to be clear. This is a podcast for medical conversation and chit chat, and quite frankly, inappropriate statements from your good friend, Angie, that that would be me. Okay. So let's get back into it with Dr. Rachel. When it comes down to tell me the insides that I need to know about hypertension. There are higher risk in different places and different communities. What is what is blood pressure? Like, what is it like at its core? Can you give me like like what is it? Give me an education about blood pressure. Yeah, definitely.

SPEAKER_04 9:45

Yeah, and I think, you know, I I like to keep it simple, also because I'm a simple person. Um, if you think about our arteries as kind of like a pipe, they take blood from our heart, it pump their heart pumps blood out. And if your pipes start to stiffen from pressure, just building up against it, then that is going to damage the arteries or the vessels. Those pipes are going to harden up and have more resistance. And essentially, over time, you get end organ damage for all the organs. So the heart itself is going to what we call hypertrophy. It'll get thickened. That affects its long-term health of your heart. Um, you also get kidney disease. So you'll see a lot of people ending up on dialysis because they have years of uncontrolled blood pressure. Yep. Um, and then of course, the stroke is when it affects the arteries of the neck or the head. And you get this buildup of plaque in there, and the arteries are just deteriorating. And it's kind of like once it starts, once they start going down, it's hard to stop that kind of, you know, escalation of more and more strokes. So the best thing to do is have a healthcare provider in your corner that can be a nurse practitioner, that can be a community health worker, a physician, whatever you have access to, and get your blood pressure checked and learn how to check it on your own. That would be my biggest advice for people is just to be aware of their numbers. And the top number is what we call our systolic blood pressure, and it's kind of like the pumping and the relaxation of the heart. And the bottom number is the diastolic. You don't need to know the details of that. Just know that we have to take both of them seriously. And apologies, my son is homesick.

SPEAKER_02 11:38

No problem. Noah is a guess on Noah is a guess on brain friends.

SPEAKER_04 11:43

Yes, yes. He know he finished building his tower and now he is uh is bored. Um, but yes, it that was that is a big uh message that I really want to get out into the world is how important it is to just know your numbers.

SPEAKER_02 11:56

So if I know my numbers, what is it that I can do about the numbers?

SPEAKER_04 12:01

I think everyone's for the most part, blood pressure recommendations are to be under 130 over 80. That's not for every single person, of course. And we know from our research that even probably lower than that is the best. There was a recent study that found that folks who had blood pressures closer to the 120 mark had lower risks of long-term dementia. And we know that sort of also goes along with stroke. That was called the sprint mind study. So I think we're gonna be pushing lower and lower numbers, to be honest, as we keep going.

SPEAKER_02 12:35

Yeah, and I've noticed that they've done that in diabetes as well. Um like it used to be if you had an A1C under like nine, you were good. And now it's like 6.5. And it's like definitely, but yeah, um, when you look at blood pressure specifically, it's what are the factors that can really help a person? Um I mean, you would know because you would have a headache, right? Headaches are like the first thing to let you know that your blood pressure is high. Maybe sometimes.

SPEAKER_04 13:11

Yeah, sometimes some people smell headaches, yeah.

SPEAKER_02 13:13

Yeah, because they call it the silent killer for a reason.

SPEAKER_04 13:16

Right. Most people don't have symptoms, but yeah, some people do get headaches when their blood pressure is high. I think if you again, it's really just knowing your numbers, you have to use the monitor and learn how to use the machine properly. I did do a research project on 150 stroke survivors at Yale, and I asked them about how they check their blood pressure. We found out that only one in five actually check their blood pressure correctly. So wow. I would definitely encourage everyone to. There's a great video on the American Heart website. It's a woman in a yellow shirt. It's three minutes. Okay. Um, and I would just encourage people to read to watch that video, or if you want to read, of course, the American Heart website, just to make sure you're checking it properly and using like an appropriate size cuff. Um, so so that's a great way for you to have kind of agency on checking your own blood pressure. And we also found out that black and Hispanic patients were less likely to reach out to their healthcare professional if their blood pressure was above goal. So that's also something worth exploring is what are those barriers to people, you know, reaching out and asking for help or saying, hey, you know, I'm not gonna wait six months till my next appointment. I'm gonna contact them now and say that my blood pressure is not controlled.

SPEAKER_02 14:35

So there's yeah, there's a lot to do. If they're not taking it right, how would they even know? Exactly.

SPEAKER_04 14:41

Yeah. So there's multiple layers there.

How To Check Blood Pressure Right

SPEAKER_02 14:43

Well, first of all, to my to the listeners, I will put a link to that specific video. I will find that video. Yeah, I'll send it to you. I will, yeah, thanks. I will and I will put it in the show notes uh because I think like I don't take mine every day, but I know mine is when I go to the doctor, it's like 120 over 80 or over 70. Like it's yeah, it's good. And I'm always kind of surprised because I feel like I have, I feel like it could be high. I'm always I'm I'm always pleasantly surprised. Okay, so I'm trying to understand what it is that well, first of all, you said about taking it correctly. What is correctly? What am I, what is so if I go to CVS or Walgreens or whoever, and I get the thing, I put this cuff on, it's going down my arm, right? And I know it's supposed to be lined up in some way.

SPEAKER_04 15:37

Yeah.

SPEAKER_02 15:37

I push the button. How is it I could be taking it wrong?

SPEAKER_04 15:41

Well, first of all, you need to have a good machine. So usually those are gonna cost you closer to like the$50 mark. We do actually not recommend the wrist cuffs. They've just been found not to be as good. Of course, if that's all you have, that's fine. But kind of the real recommendation is to have one that goes right above the elbow. Um, you want to be in a seated position with feet on the floor, both feet on the floor. You don't want to be like relaxing in a couch or in bed, feet on the floor, back supported on a chair. So, really, kind of like at the table where you eat is a good option because that's usually where those chairs are in the house. Um, you want to be relaxing for at least five minutes. And you need to make sure you have a cuff that fits you. You don't want to be using a cuff that's super small or alternatively super big. Um, so again, this is all on that video. And what I would say, some people get really obsessive about checking their blood pressure like five times a day. That's also not healthy to be, you know, doing something that extreme. So I would talk to your healthcare professional about how often and for how long. Oftentimes, if you check it for three to five days and you're good, you don't you can take a break for a while. It doesn't need to be, yeah. So that's why I would just say have a good relationship with whoever is the person in charge of managing your blood pressure and come up with how often should I be checking it and what are my numbers? What is my exact goal? And then what should I do if I'm not at that goal? How do you want me to reach out to you? Do you want me to send you a my chart with a picture? Do you want me to call your office? So have that plan in place and that's gonna set you up for success.

SPEAKER_02 17:30

Wow. So if I let's say I take my blood pressure and it's off the cuff, like I don't know, one like 200 over something really easy, right? I should call the ambulance or should I call my doctor?

SPEAKER_04 17:48

That's a good question. And that's again something that should probably be discussed with your individual doctor. I mean, blanket statement, that's really high, and most doctors are gonna tell you to go to the emergency room, as I probably would if someone called me. Again, I mean, just again, blanket statement. I'm not giving any personal advice.

SPEAKER_02 18:04

Oh, no, no, no, no. Absolutely.

SPEAKER_04 18:07

But yes, I think that having that threshold also is important. So that's really thank you for bringing that up. Is like, what is the threshold where I shouldn't even bother reaching? And I think most people is gonna be over 180 with that top number once you're into the 190s, 200s. You know, unless you're someone that really lives up there and it happens all the time and you have this plan with the doctor in place, most people are gonna send you to the emergency room with those numbers.

SPEAKER_02 18:34

Okay, because that's the thing, because it is so silent, it's like you take it and you're like, oh man, my numbers are high. But so the fact that I should be taking it with my back, you know, sitting up, feet on the floor, five minutes, that information I've never known. Now I did realize if I take it laying down, it would be better. Interesting. Yeah. If I would take it, if I take my, you know, if I sit on the bed and I take it on the bed and I just lay all the way back, I'm gonna get a much better number than if I take it while I'm sitting up.

SPEAKER_04 19:09

Interesting.

SPEAKER_02 19:10

Now it could have been the cuff that I had from, you know.

SPEAKER_04 19:14

Yeah, it might be about the way the cuff fits or just you. Um, but in general, just so that everyone's kind of doing the same thing to the same standard, we do recommend that official positioning.

SPEAKER_02 19:26

So when you look at um people being discharged, what is the biggest gap that you see between people being discharged to go home versus the people that are sent to um uh rehab? Like after my stroke, I was sent home immediately with a pile of information that I didn't really know what to do with, which they I now refer to as the cliff. But exactly it's so weird, it's so crazy the way our system works. But I know if I'm in that cliff, and you know, for me, I worry about the person that's living alone and doesn't have a caregiver. Like, how do they get help? And if a person already had mental health issues, how do they get help?

When High Numbers Mean Urgency

SPEAKER_04 20:17

Yeah, well, I think just answering the first part of your question about the transitions of care, that is so important. And I mean, we met at Anja El Sharif's October meeting, and that's really it's incredible she's done that because this is a huge gap. It's a cliff, like you said. And um, there are so many people that struggle with knowing what to do. I mean, ideally, someone goes to rehab and they have all this support and mental health support and physical support, and then the family is involved, but we know that doesn't happen a lot of the time. Um, that reminds me of one of my patients who I actually brought with me to a couple talks at Yale, um, who lives alone. And she had a pretty debilitating stroke, but she was good enough, quote, good enough to go home by herself. And she was like, oh my gosh, you know, she's she's home, she's like a new person. Thank God she had a lot of resources to hire help for herself. Wow. Some so many people don't. Yeah. And she, you know, she's uh an international lawyer, like she has resources, she knows how to navigate things. Um, but a lot of people would have really fallen through the cracks there. And um, and it just makes my heart go out to everybody. So I think, you know, having conferences like that where we are getting people together, understanding like, where are the gaps? How do we fill these gaps? Another really cool thing, and I promise I'll get to stamp out stroke, is that um, you know, the stroke support organizations like you run with Arch and so many other awesome ones out there are very siloed. And so many stroke neurologists or stroke providers don't even know. To send their patients to these places. Um, there's um a group at Adelphi. I don't know if you've heard about this. They're having um, they're gonna have a meeting in April to bring together some stroke survivor organizations about how to get everyone working together. Wow, I love that. Where is this? That's at Adelphi, it's on Long Island, and I can definitely keep you posted. I'm I'm gonna be attending. Absolutely. Um so there are other models around the world. For instance, the person running this is one of the leaders of Safe. It's I don't remember exactly Stroke Alliance. It's the European Stroke Alliance.

SPEAKER_02 22:42

Who doesn't love a good acronym?

The Discharge Cliff After Stroke

SPEAKER_04 22:44

No, you can't I know that I can't remember, but I mean it's it's basically the European Stroke Support Organization group, and they have everyone kind of working together as this big force.

SPEAKER_02 22:55

Yeah, they do it, they over the over the pond, they get it together, they have it together over the pond. That's all I'm gonna say.

SPEAKER_04 23:01

Oh, totally. Same in New Zealand and Australia, they have a great group. So I think having moving more towards where these stroke support organizations are the norm, standard of care to get people plugged in with this community that helps with mental health and linking folks up with resources. Um, so so there's a huge gap, but I'm I'm really excited about you know the work that Angel's doing and the work that you guys are all doing and the Adel Pide group. I think we're going in an exciting direction here. Um so I will segue off.

SPEAKER_02 23:37

I tell you what, um, Angel is Dr. Sharif is amazing. She gets it all the way done. And um, I have my organization that I work on with uh Rosa and Arch. And I'm trying to figure out how I can take Rosa, the resource orientation for stroke and aphasia. Again, who doesn't love a good acronym? Because I felt like when I left the hospital, it was like, okay, here you go. And if I don't have a husband who works for the insurance company, and thank God his first year in college he went to be an SLP. That that little bit of at least he had a little bit of a foundation and he knew that okay, I don't know what's going on, but I do know my my wife is supposed to be in therapy by now. I know that, and he knew who to call at the insurance company and say, no, no, no, this is capitated, this is that, he was doing all the things. But if I have a husband who is a firefighter, he doesn't know that. Yeah, people shouldn't find their way to resources by accident. Exactly, that's the whole point. Yeah, if I'm not supposed to get anything anywhere else when I'm walking out of a place where I've been taken care of, you should give me the things to help me continue to be well. But also, people can't take what they're saying. There's a there's a uh a I don't know how bad I am. It's like the lady you were saying, she went home and she was able to hire people, right? But when you go home, you don't know how bad you are when you're walking out of that hospital. I literally thought I went, I'm gonna say a little story, all right? Little story time. So I come out of the hospital, they send me home days after the stroke. So I went from ER to the hospital, and you know, inpatient, and then I was released. Yeah. And I was fighting tooth and nail. Get me out of here. I want to see my primary.

unknown 25:44

Sure.

SPEAKER_02 25:44

I don't care if she doesn't have any appointments. I will wait. I will talk to her in the parking lot. I want her to know what's up. So they let me out. I my husband, we go straight to my doctor's office. She sees me and I'm like, listen, I've had these strokes. I'm off in three weeks to go on a cruise. If you can give me two weeks off, I can go into my vacation. I have the third week off, I'll go back to work, it's all good. And I remember she looked at me dead in the windows of my soul. Oh, I'm sure. I'll see you in September. It was May. That's when I realize I'm like, all right, well, okay, I'll take the summer off. But I I fun fact, I have never been back to work, but it was that level of not knowing how bad it was. Because here and the thing about aphasia, which is all or just a stroke, you don't know how bad it is. You don't know what's missing or what's been taken until you go to use it. I didn't know I couldn't read until I went to go read.

SPEAKER_04 26:52

I think you said a quote that was so powerful on this topic at the conference, didn't you? Stroke took stuff I didn't know I had, or something like that.

SPEAKER_02 27:03

A stroke will take things from you you did not know were up for grabs.

SPEAKER_04 27:07

Exactly, that was it. And I was like, wow, that's so meaningful.

SPEAKER_02 27:10

Well, feel free to cite me.

SPEAKER_04 27:12

I tell you know, I think I have, or I've definitely shared that.

SPEAKER_02 27:15

Yeah, I I love that for me. But yeah, because it is like water on the water on the motherboard. Yep. It's such a such a violation because the things that it takes, like I said, you didn't know. I didn't know that knowing how to tie my shoe was something I could lose, yeah, without um because you don't realize that it is a a brain attack, is a bruise on your brain. And when you look at it and say, and accept that part, and that's from the part of being a patient, I have to accept that no, my brain is not the same. It's fundamentally changed because now it's taken a hit. Yeah, and if I have a bruise on my shoulder, uh you know, oh, it's a bruise on her shoulder, she has it in a cast. It's very clear to me and to the people around me what has happened. But when it's on your brain and you can still maintain, it's very, very hard not only for the other people around you, but for the person who's had it. Like myophasia wasn't a problem until about maybe a month or so in when it was really oh, this isn't getting better, right? It took a while because I can think okay. I just assumed that my mouth would it would, it's it's just a little, it's just a little off. It's just not syncopated, it's not synchronized. It'll it'll get there because all my thoughts were still clear. Yeah. And then as it didn't, it's like, oh, this is this isn't getting better. And that's when people, that's when your eight weeks is over. Right around that point, you're like, oh, and now I'm being kicked out of therapy when I'm just getting into it. I know the system is so crazy. So tell me about Stamp Down.

The Invisible Losses After Stroke

SPEAKER_04 29:08

Yeah, no, thank you for sharing that. It's such a common thing I hear. There's like this individual or uh invisible, you know, aspect where what people don't see on the outside, and people sometimes feel like they have to prove that they had a stroke and that they are having, because it's like, you know, people are so tired, there's this fatigue, you don't feel like yourself. You uh, you know, your thinking is maybe a little off. And just for people to say, well, you look fine, you know, you can you can take care of your family. And and yeah, it's so common a hundred percent. Um, well, thank you for asking about stamp out stroke. So stamp out stroke is our community engagement program in the Yale Stroke Division. Um, it's been around actually since 2005. So our head uh nurse EPRN, nurse navigator who leads our nurse navigator system, Karin Nystrom, for those who are familiar. She started the group. When I came to Yale in 2020, I joined forces with her. We sort of expanded it to involve medical students and trainees, residents and fellows. And we have been really active. We go out into the community a couple of times a month. We teach people about stroke risk factors, we do tabling, we do lectures. We've probably done, I think we did around what was it, 60 events? Um, we're really out there. And that's because we have such an amazing group of volunteers that are passionate and going out all the time. We we try to, we even have some Spanish-speaking events. We have done a little bit of research with some of the events as well, just seeing how people come to the emergency room slower from certain communities, how the stroke knowledge is less in certain communities. Um, and again, we've started working with kids, which has been really fun and put out some about that work. So yeah, it's been so meaningful. And um, I'd always I always love to chat with people that want to get that going in their communities as well.

SPEAKER_02 31:13

Well, I have to talk to you offline about my Rosa, the resource orientation for stroke and aphasia. Um, I wanna um because when I had my stroke, I was it was just so much, and I just wanted to give people a starter pack. Like, you know, like here's your canteen, here's your backpack, here's all the stuff you're gonna need. Yeah, exactly, you know, and and send you on your way because there's nothing I can do, I can't help you with in what's in your mind, right? It's hard and another classic line from your good friend Angie is it's hard to be mind over matter when it's your mind that's what's the matter.

SPEAKER_04 31:56

It's great. I love the words and the pearls.

SPEAKER_02 31:59

No, but it is so true though.

SPEAKER_04 32:01

Yeah, it really is.

SPEAKER_02 32:03

It's hard to be mind over matter because usually you're you know, think positive, do this, do that. But if your mind is broken, if the brain is broken, it's if it's my broken brain, yeah, how can I be mind over matter and try to talk myself out of feeling this way?

SPEAKER_04 32:23

Yeah, of course.

SPEAKER_02 32:24

You need help. Right.

SPEAKER_04 32:27

You need help. I mean, people can't do it alone, and I have been pushing along with a lot of stroke survivors I work with locally for more peer support options.

Stamp Out Stroke In The Community

SPEAKER_02 32:39

So let me start, uh, so let me start this up real quick. So, fun fact when I first called Dr. Celeste, um, I asked her as a speech language pathologist, how does a person with aphasia get a therapist? And she said, I don't know. And then she asked me, would it be cool if we recorded our conversations? That's a true story. So when Dr. Rachel and I get into this part about aphasia, peer support, and mental health care, this is not a like random side quest for me. This is one of those real gaps that made me start asking bigger questions because traditional mental health care is usually talk therapy. But when what happens when talking is the injury. If the person with aphasia is trying to process grief, fear, trauma, identity, depression, or the whole what the heck just happened to my life part of recovery, they need we need support that we can access. Otherwise, I'm paying a copay to literally not be understood. Yeah, that's not what's up. So this is why peer support matters. This is why connecting with a person with aphasia matters. Um sometimes you need a clinician, sometimes you need to research, and sometimes you just need an OG to look at the newbie and say, listen, I get it, I got you. So listen, stay with us, stay with me, because these are the moments where the conversation feel finds the point in real time. Because what I was looking for when I called Celeste was because I wanted I know I couldn't just go to my regular doctor because my aphasia was in the way. But instead, she was like, listen, let's uh let's start this podcast. Oh man, I love that. Anyway, stay with us and hear how we kind of work through it together. Let's get back to it.

SPEAKER_04 35:06

When I say peer support, I mean literally linking up a stroke survivor that's getting out of the hospital with someone like you, one-on-one.

SPEAKER_02 35:15

You know who's doing that is Trish Hambridge out of aphasia synergy. She has a peer befriending um group, and it's to put people with aphasia like an old head, like an old g like myself with a newbie, and just to give them because people with aphasia, we can't even go to therapy, right? Because the therapist cannot understand us.

SPEAKER_04 35:46

I mean, that should not be the case. I would hope that they shouldn't be able to do that.

SPEAKER_02 35:49

But here's the well, here's the but here's the thing, Rachel. How could it not be the case? Well, because it's a I literally speaking a different language, it's not they can uh offer it, but they can't literally, it's like they literally cannot, it's like I'm trying to talk to somebody with sign language. You if if you don't know sign language, but if I can't talk, how can I express myself? So now I'm paying you to not understand me. Yeah, I don't know. I can't even even if you had a doctor that wanted to do it, it's not feasible.

SPEAKER_04 36:27

Are you talking about speech or physical?

SPEAKER_02 36:30

I'm talking about speech, I'm talking if mental health for a person with aphasia that wants to talk to a counselor.

SPEAKER_04 36:37

I see. Okay, so mental health, yeah. I agree. That's tough.

SPEAKER_02 36:41

It's it's not even like they don't offer it, it's not a sustainable model because they can't understand, you know what I mean? Like it's not even like we don't offer it, it's not something that can work.

SPEAKER_04 36:56

That's yeah, that's a really interesting point because our standard model does is really talk therapy, right? And what's the first word there is talk.

SPEAKER_02 37:04

There's talk. So if I can't talk, and that is my problem, that is my hurt, that is my trauma. Yeah, how can I, you know, and so there is a huge, huge disconnect there, but I don't have the answers for that, other than to create Rosa and give people a starter pack and send them to Trish Hambridge where they can get a buddy and kind of pair up and say, Listen, I get it, bro.

SPEAKER_04 37:32

I love well, I am a part of Sequins, which is the Society for Equity Neuroscience. And um, I, you know, that has been really inspiring for me to, you know, engage with global health equity folks, as you know, there's so many disparities, and that drives a lot of the research I do.

SPEAKER_03 37:52

Yes.

SPEAKER_04 37:53

Um, so definitely check that out. It's um we're we have a whole training program called the Sequence Scholars. So we're teaching the next generation to be more equity focused. We have a journal. It's led by Dr. Bruce Ambiagele, who's like, you know, the leader of neurologic health equity work worldwide. Um, so that's another group I'm pretty active with. But I think really just coming back to what I said at the beginning, I'm so inspired by you. And it's you, the stroke survivors, that bring to light what we need and how you know we should be focusing our research efforts and our clinical efforts. I mean, you just telling me that about something so obvious when you think about it. Like, how does someone with aphasia get psychotherapy or talk therapy after a stroke? When I'm just like, oh, everyone should get, you know, mental health resources. But for you to, you know, that's why we need your voices.

SPEAKER_02 38:47

Wow.

Aphasia And The Mental Health Gap

SPEAKER_04 38:48

Yeah. And and and I, you know, I'm there's gonna be a new study, stroke study called Clarity that's gonna start enrolling in the fall.

SPEAKER_03 38:56

So tell me about it.

SPEAKER_04 38:58

I thought, um, but that's another example of how we are going to be using patient voices to partner with our clinical research, um, so that we are, you know, gearing things for you and making sure that things resonate with stroke survivors and we're honoring what's important to you. So um, so thank you again for this amazing opportunity to be here today.

SPEAKER_02 39:22

Well, let me ask you this for my listeners, my fellow stroke survivors, are you looking for people to uh not recruit per se, but um are you looking for other voices? Is you know, uh, you have the platform here, you're on the show. Is there anything you would want to bring to light that you would want to say to uh other clinicians, other researchers, or survivors that they can help with what you're doing?

SPEAKER_04 39:54

Yes, I would say that in general, anytime a stroke person is doing research or advocacy or thinking about ways to improve care, bring stroke survivors with you. Um, partner with stroke survivors. If you don't have the resources to make a full-on patient advisory board, that's fine. But just make sure you're including community and patient voices in everything you do. Um, it's it's so transformative. It makes you, you know, have be more intentional and increases your likelihood of being successful with whatever you're doing. Um, because those are the voices, you know, if you make something and patients aren't interested because you didn't ask, then you could have saved yourself a lot of time, right? Yeah. Um, so so definitely partnering with patients and community members is key. And um Clarity, our patient advisory board, we had an awesome response. So we right now are, you know, we we have a good full board, but if you're interested, we would love to have, you know, patient ambassadors who spread the word about the study. Um, it's gonna be, we're trying to use really novel and exciting um recruitment and retention techniques that are equitable for all stroke survivors. Um, so if you're interested, definitely reach out. You can reach out to Angie, who unbeknownst to her, is on the advisory board. And uh and yeah, yeah, I can now listen.

SPEAKER_02 41:25

If you do DEI work, if you're doing equity work in this stroke space, I'm like, whatever I can do, however I can lend my voice, it's so important. Real quick, while I'm looking this up, can you tell me about the importance of secondary stroke and how it is different from the first stroke?

SPEAKER_04 41:47

Sure. Um, so secondary stroke prevention means someone that's had a stroke and they want to prevent another one from happening, versus primary is someone that's never had a stroke. Um, I think that once we know someone's had a stroke, we hopefully can figure out why that happened. And we can do more like precision secondary stroke prevention, as in, did someone have their stroke because of traditional risk factors, where we need to really optimize um exercise, diet, uh, the medications someone's on, their blood pressure, for instance, or do they have their stroke because they have a propensity for blood clots? And we need to work on, you know, what the best medication is for them with their hematologist or their care team. Um, so it's, you know, more targeted therapy, I would say, as opposed to primary stroke prevention, is really just like in general, being healthy, taking care of all of your risk factors, and you know, knowing your numbers, like I said earlier. So that, you know, we really want to prevent strokes from happening in the first place if we can, of course. Um, so either way, it's being, you know, a really good partner and having a good care team working with you. Um, but a lot of it's, to be honest, very similar. Um, just taking care of yourself.

SPEAKER_02 43:06

So, what does it matter to track it down if there's no cohesive answer?

SPEAKER_04 43:16

That's a really good question. There are what we a certain group of people that we call cryptogenic strokes, which means we don't know why they happened. It's actually a decent size number. Um, but there are also people where we do know why it happens. And not every single person has a stroke because of the traditional risk factors. Sometimes we'll have people come in that are like marathon runners and you know, perfectly quote, healthy. Right.

SPEAKER_02 43:43

Eating kiwi on the way. They were literally eating avocado while they had a stroke. Like, what?

Research With Survivors At The Center

SPEAKER_04 43:49

Exactly, right? And there are other reasons for people to have strokes. So, you know, as someone gets older, you can have an arrhythmia called atrial fibrillation, which just really happy. With age. A lot of people have strokes because of that. And for that reason, it's, you know, a lot of people will get sent home wearing a heart monitor to try to find net arrhythmia. Some people have a propensity for having blood clots, and that's just a genetic thing. Some people have problems with the makeup of their arteries, again, going back to genetic predisposition. And it's important to find that because then we can treat people with the appropriate medications and give them precautions, for instance, of how to live their life moving forward. So I think that yes, there are some people where it's totally out of their control, but it's good to have a full workup, have a good relationship with your healthcare professional, and in general be healthy. It's not just for stroke prevention. As I mentioned earlier, a lot of the risk factors for stroke are also risk factors for dementia. So controlling those are going to be beneficial, not just for stroke prevention, but for dementia and other issues. Um Yeah.

SPEAKER_02 45:05

I have one last question, which is my smart cookie question. If you had a magic wand, what is the one thing you would make stroke, would would you change in stroke or aphasia care?

SPEAKER_04 45:21

That's a good question. I'm not gonna talk about blood pressure again, so I think I've exhausted that. Um it would be the mental health piece, and we've talked about that as well, but that is something that I really feel strongly is not addressed. We focus a lot on P T O T speech, and I think there should be a fourth category for mental health.

SPEAKER_03 45:43

Okay.

SPEAKER_04 45:44

Um, again, as you brilliantly brought up, that's gonna look different for someone with aphasia than someone without. Yeah, that's the key. That's the key.

SPEAKER_02 45:52

And it's like you can't go, or it's like they told me to journal. I can't write. I can't. What do you mean journal? Or what happened to me was uh I remember I went to the gym and I couldn't do reps because I can't count. Sure. So the guy said, I went to another gym, and the guy was like, Well, okay, well, just say the alphabet. I can't say the alphabet. No, I need you to count for me. I'm paying you to be a trainer for me because I need you. So I have my guy and he's been counting my reps for the last seven years because seven years later or eight, whatever it is, I still can't count my own reps. But either way, Rachel Foreman, I thank you so much for being on brain brain france.

SPEAKER_04 46:33

You gotta give me a brain friends. I'm not doing that.

Secondary Prevention And Unknown Causes

SPEAKER_02 46:38

I get out of my Dr. Roy Hamilton. Did it? Come on. Oh man, all right. Sorry, now there you go. There you go. Say that. Oh man. Listen, I appreciate you. If there's anything I can, which I'm obviously doing for you, is on some type of committee that I've signed up for. There you go. Send me the uh always just send me the uh the uh uh the invite. I'm around. Anything I can do that's when people are doing good work, and if I can only make one suggestion, when you guys do the work, and this is for all the researchers that listen to the show, make sure you bring that work that you've done back to the people you uh allegedly did it for. Yes, yes, I bring that dissemination to the people so they know the work that they help to either uh answer questions or to advance research, but at least let it be known. So that's the episode. Brain France! So before we close, I want to leave you with something you can actually do, and that is know your numbers, know your blood pressure, know your goal, talk to your uh doctor, your care team, and uh do that this week. Um you know, write down your questions, and so um you can have a real conversation and know what your preventative goals are. Because you can't, if you don't know where you're going, I can guarantee you you will never get there. So ask when the number's too high and when you should call, do all of those things. Alright, so I want to thank Dr. Rachel Foreman for being my guest. She was amazing. All of the great information that she shared with us, all the wonderful work she's doing with Stamp Out, and all the uh organizations that she's working with, teaching the kids about prevention. It's awesome, awesome, awesome. Dr. Rachel Foreman understands that, and I'm grateful that she brought her knowledge, her community focus, and her uh situation to Brainprint. And of course, wait for it. Shout out to Noah. He was home being a kid, gave the episode a little of that uh background family life. They happen in real homes and real families with things happening around us, and sometimes that's how life is. So, with everything you've heard today, let me also again remind you I am not your doctor. I am not. This is a podcast. I shouldn't have to say this over and over, okay? Get your blood pressure goals, your medication, your symptom plans, they are all personal. Take what you heard here and go ask somebody. Okay, go, not me. Don't I'm not gonna say it again. I will also include helpful links in the show show notes. So the including the blood pressure resources, the monitor information, and the suicide crisis outline. If you feel some type of way again, don't call me. Call them, okay? Thank you for listening, thank you for learning with me. So, until next time, take care of your brain, take care of your body, and take care of each other. Peace, y'all.

SPEAKER_01 50:20

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SPEAKER_02 50:33

Brain Friends the Podcast.

SPEAKER_03 50:37

I'm so extra.