Time is the Best Cure

We know it is easier said than done. In Part Two, Willa talks about emotions after a brain injury from her experience as a neuropsychologist and assistant professor at UTSouthwestern.  Many survivors have a negative outlook for their future, but Willa asks them to focus on what they can control, utilizing coping skills: including writing a journal, conditioning the brain for deep sleep, and exercising daily. It is important to not feel that they must be brave for others.  Willa will explain the ABCDE approach that she uses for counseling and other sources to receive help, such as professional associations, life courses, conferences, and even chatgroups on Facebook.

Transcript

Kezia: 0:10

Hi, I'm Kezia, a Stroke Survivor and a member of BIND.

Carrie: 0:14

And hi, I'm Carrie, a Stroke Survivor and a member of BIND as well. And today we'd like to welcome Willa Vo, who is an assistant, and Professor at UT Southwestern in, in the Department of Physical Medicine and Rehabilitation Division of Rehabilitation Psychology. I always like all these big words that we just try to say. Um, she works with the neuro rehabilitation populations, like people with acquired brain injury, traumatic brain injury, strokes, kind of like the people that you hear us talking about all the time. So, welcome Willa. We're excited to have you here today.

Willa V: 0:46

It's great to be here. Thank you so much for having me.

Brian: 0:49

Welcome to BINDWAVES, the official podcast of the Brain Injury Network of Dallas. I'm Brian White, BIND's Executive Director. On each episode, we'll be providing insight into the brain injury community. We'll be talking to members and professionals regarding their stories and the important role of BIND's Clubhouse. We work as a team to inspire hope, community, and a sense of purpose to survivors, caregivers, and the public. Thank you for tuning into BINDWAVES. BINDWAVES Let's get on with the show.

Carrie: 1:20

So just to get a little bit started, let our listeners get to know a little bit about you. Just tell us a little bit about you and what all that is that I just said. That I act like I know?

Willa V: 1:29

Sure. Um, and so I'm a Rehabilitation Psychologist. So it's a specialty in psychology that really focuses on individuals with, uh, disabilities, whether congenital or acquired. Um, a real big focus of our field is really helping, um, Uh, individuals adapt and cope with those disabilities, um, and our goal is really to minimize any sort of activity limitations, uh, functional limitations, and really promote, um, community integration and really just getting back into the world, um, and so it's, So as you mentioned, I am, um, uh, specializing in, uh, particularly neural, uh, populations. Um, I see a bunch of all other kinds though, transplants, um, uh, transplant, organ transplants and what not too. Um, but traumatic brain injury has been an interest of mine ever since, uh, my last year of grad school. So, um, uh, very lucky and, and, and glad that I'm in this field that I'm in.

Kezia: 2:25

Yeah, I think it's awesome too that you just like, are focusing on people like Carrie and I. We talk all the time about how different, um, professionals in this field, like, focus on people like us. It's very different. It's a very, um, It's just a different community. So, and we always learn. We always learn every day in our conversation. So do I. Yeah. Um, but, uh, we wanted to kind of focus on how the changes that we currently have. Like, obviously we have physical differences and cognitive issues. Um, Carrie and I, even both of us, had strokes. We were just, um, different, different. Um, so I kind of wanted to see if you can explain to our listeners. Uh, we do talk about it a lot, but you know, it's really good for our listeners to kind of learn what each, like, individual that has had a brain injury, um, in whichever way, um, how the ability to communicate with other people gets affected, and how we just go through these challenges, and what do they look like, um, so if you can tell us kind of about that, that would be great.

Willa V: 3:34

Yeah, absolutely. So, you know, in, with the work that I do with an individual I see, um, a lot of times communication can be affected by different things, often times due to the nature of the injury itself. And so if you think about a stroke, it's often, often, um, very, you know, specific and focalized to a certain area. Um, and so for example, for those who have left hemisphere strokes, um, for most of us, for about 90, 95 percent of us, um, most of us are left hemisphere dominant, meaning that we have our language abilities on the left side. So you can see that if you have a left hemisphere stroke, you're more likely to have language deficits such as expressive aphasia or receptive aphasia. And it really can affect how you communicate with others and how others communicate with you. Um, but there's also other things, even if the, um, language area specifically wasn't affected, um, there can be differences in how you express your needs, um, and how, and what kinds of needs those are. Um, even if you've had, uh, difficulties with, uh, dysarthria or with slurred speech, that's also going to affect how clearly that you can communicate your needs. Um, you know, the other thing too is that there's a lot of adjustment that happens after a brain injury, right? So all the things that came so easy for you beforehand. You're almost relearning. Um, and for someone who hasn't gone through that, or maybe is just seeing you as you go through that, they're not really, you know, they can try to put themselves in your perspective, but they don't, they don't really walk in your shoes. Um, and so being able to express to somebody, hey, I'm having trouble with this now. I didn't before, but now I need help. Um, really takes an adjustment as well. And so I think that it's, can be really challenging Um, From a adjustment standpoint too, to really communicate what are those needs, um, and how to effectively get those needs met.

Carrie: 5:32

Yeah, and I like what you just said too, because we, we tell other brain injured survivors when we go out and talk, it's like, your doctors and your nurses and your therapists are all there for you and they are trying to empathize and understand what you're going on, but no one understands a brain injured like another brain injured. Absolutely. I mean, no one, I mean, no one. You don't get it, but you don't get it. Right. For lack of a better, but, so, it is weird because communications is one of those things, like, I didn't have, mine's right sided, so I didn't have those aphasia issues and that, but communications is just, I mean, it's so important being able to communicate, but even any brain injury, it's so hard to relearn how to communicate and, um, I mean, so how can you, whether it's, let's just say you don't even have aphasia, it's just a brand new, you know, brain injury, right. How do you communicate those? I I'm not the same anymore, or

Willa V: 6:26

Yeah, you know, I think this is an interesting topic to talk about, especially when it comes to recognizing that brain injury is often an invisible disability. And so, when someone is approaching you, whether you know them or not, and they're just like, what? I don't understand what you're saying, and, and, is it really your responsibility to tell them? Um, I think that the unfairness of the burden that individuals with disabilities and brain injuries They're the ones that have to decide, do I, you know, do I disclose this or not? And it's not really an easy cut yes or no. And so I think that when it comes to trying to communicate with other people who may not readily recognize that you've had a brain injury or have an invisible disability, um, You know, first off, to understand that it is your choice. It is up to you. You get to say, you know, if you think it's going to be helpful for you to disclose, Hey, I have a brain injury. Can you repeat that? Cause I didn't really get that. Or if it's something that you're like, you know, I may not interact with this person again. Um, you know, it's not something that, you know, maybe I've got a lot going on in my day today and I don't want to overwhelm myself with having to disclose this. Um, that's also a decision that you can make. And if you decide to make that decision, um, it can be really personalized, right? So if you want to go into the history of what happened, uh, if you want to go, you know, kind of the, the, the more basic kind of details of, well, I just had something happen in my brain and that affects the way that I talk. And so, so pardon me if I, you know, um, need to, like, uh, express myself in a different way. I think that's all definitely fair game. Um, and, and again, too, it's, It's really being able to ensure that if your needs are what you're wanting to be expressed, how are you doing that in a way that another person can try to understand.

Kezia: 8:16

Yeah, and I like how you have brought up different things that, it's just difficult. Like, it's different, like everything is okay. Whatever decision you make, it's okay. A lot of times as a brain injury survivor, and like, for example, I mean, I'm just gonna talk about myself. Go for it. It's just difficult. I mean, um, everyone's experience is just so different, and then, like, I had the stroke at a very young age. I mean, I think it's a very young age. I was 28, like, very, like, a very, like, butterfly, Just communi I mean, like a very social person. And then just going from that to something so different where I could barely speak. It was like a whole different life. And making those decisions was so challenging. And, um, Like, how, do you have a suggestion as how to overcome that? I mean, based on me, it just meant time. That was it. Like, I, I don't think I can make a different decision. Even as I look back into my, my experience, I just needed time to understand what was going on, to like, time away from people, even though I love them, like it was just time. But do you have any other suggestions for other people that maybe their experiences are different?

Willa V: 9:41

Yeah, you know, well, let me first say that time is one of the best healers. It just doesn't take very quick, right? It takes a while. Um, I think other things too that get learned along the way, um, you know, hopefully you'll have a team of medical professionals, um, mental health professionals, or, you know, any sort of other allied professionals, like therapists and whatnot, who can really give you that education. Right? So a lot of times, you know, No one prepares to have a stroke. No one prepares to have a brain injury. We might hear about it, but we don't directly experience it. And so, you know, when it happens, or if it happens, It's like learning a whole new language. And so hopefully you'll be able to have people in your life, professionals who are able to explain that language in a way that you understand it. And that can also help too, right? I think that a big fear that a lot of people with brain injury strokes have is what if this happens again, right? And so your doctors can really talk to you about well here, you know, Yes, you know, if you've had a stroke before, you're at risk of maybe having another one, so here's some things that you can do to prevent that, right? Um, so I think knowledge is going to be really key, uh, as part of that too. Um, and then, you know, for other things that, um, I think something else that becomes learned is how to advocate for yourself. Um, I'm huge on self advocacy. Of course, you know, again, hopefully you'll have family members or friends or medical professionals who can help advocate for you. And over time you'll learn also how to do that too, right? So when your doctor says, hey, you know, I think you should take this medication, it's okay to ask. What's it for? Why do I need it? What is it going to help me with? Right? Um, being able to be an active participant in your own health and you're in your own care. So that way it's something that, you know, you can feel more empowered to say, you know what, I've had this happen and this is how I'm going to continue to move on from it and keep living life.

Carrie: 11:38

That's awesome. Yeah, I'm going to take a quick little break and just remind our listeners out there, if you're listening, go ahead and click that like button, click that subscribe button. And if you're on notify on YouTube, I'm always mess that up. Go ahead and click that notify button again. Just click the button. Now I'm going to come back to Willa. So I love what you're saying. I mean, that is awesome. One of the big reasons that we have this podcast is so that we can encourage other survivors. We want to not just encourage other survivors that life doesn't end after brain injury and that hope is there and life is great. We also want to make brain injury awareness out there to the general public because like you said, so many people don't understand. First, it is a silent disease. I'm lucky. People think I'm crazy when I say that. I'm lucky that I'm physically disabled. Because when I walk up to you, you know something happened, you know, Kezia looks 100 percent perfect. Oh, Kezia, you look fine, there's nothing wrong with you, you know, but, you know, then Kezia has a day where she's like, I don't know any of the words I want to say. And that's frustrating. And I get that. I don't, I mean, I do have that problem, too. That's not, you know, that's, and yeah, everyone says, oh, well, everybody has that problem. Do you? Not really. Yeah. But, okay, so I have, I have a friend that has pretty severe aphasia, and this is one of those that I, I've learned with him. But I don't, he, it took him a long time to be able to tell me this. I think I figured it out. I had to ask him, but he gets his yeses and his no's backwards. So it's really hard, you know, and he doesn't know how to tell you that he has that problem. So you ask him a question and he's like going, yes. You know, and then so like if I try not to ask yes or no questions, but if I do and he says yes, then I try to reword it. But how, how can people maybe, like, that don't have a brain injury, um see that or figure it out or, you know, I don't know how to ask that question quickly, but I think, you know, I mean, it's, it's hard.

Willa V: 13:31

Yeah, you know, I think it's, um, especially if there's a question of aphasia, it's really key really early on to establish what is consistent, right? And, you know, It's not uncommon that things will get switched around. I actually had a patient who, um, whenever he wanted something, it was a girl. Like, give me that girl, give me that girl. But he would point to something that was not a girl. It was something, it was a water bottle, it was a remote control, it was whatever it is. Um, and so once you start picking up on those patterns, you can kind of be, help that person try to fill in the blanks as they're trying to communicate. Um, and so if it seems like someone is mixing up their yeses and nos, trying to establish how consistent is that. Is Yes. Actually always no or is no, and is no actually always. Yes.

Carrie: 14:16

Mm-Hmm,

Willa V: 14:16

Um, if that's the case, then you can figure out a way to actually establish that and, and what you did, what you mentioned is asking que the same question a different way. Just making sure you get that consistency. And so if you're asking one question and the answer is yes, and you answer it in a different way, and it's still yes, you answer in one and you ask in one more different way, and it says yes. Pretty sure it's a yes, right? Um, um, also, you know, I think this is where non verbals are also really helpful too. Um, and so, um, you are shaking your head as you're, as you're saying yes. Right. So, um, trying to figure out, you know, is that a reliable source if maybe it's more reliable of the head movement as opposed to the words that's being spoken. Um, sometimes, uh, people with aphasia can still have some preserved, um, you know, visual recognition abilities. And so maybe having a thumbs up. for a yes and a thumbs down for a no, um, or having sometimes, uh, reading abilities can also still be preserved as well, reading comprehension. So words of yes, words of no, um, green for yes, red for no, right? So there's definitely different ways even without the actual verbal expression ability, um, just to ensure that you are understanding what they're asking, what you're, uh, what they're asking of you and then making sure that you are meeting their needs based on what they're answering.

Carrie: 15:32

I love that.

Kezia: 15:33

Yeah, those are great suggestions. And I think also what goes off of that, like, misunderstanding, um, I mean on both ends, right? Like, with people with brain injury, like for me, I do have aphasia and the only way I'm getting better at it is a podcast. Because I talk non stop. Yeah, but um, I think, like, one of my family members, like my brother, didn't really go to visit me as much as in the hospital, as my mom and my dad, and they understood, because I had great therapists, that understood that it's important for my family members and my friends to understand what I was going through, um, but my brother didn't, so when I was like, What do you mean? What do you mean? Like, he's like, what do you mean you don't understand? Like, why do I have to repeat this, right? Um, and that ended up being like frustration on both ends. Um, like do you have any suggestion on how do we and then on top of the frustration, it's also like the emotional effects after a stroke like, um, I've always been like a crier, always. But there are other members here at BIND that um, participate into this, the podcast of like, these are my questions, like I want to learn about this. And one of those is like, how do I handle all these emotional effects? Like I never cried before and now I feel like I watch a movie and I cry all the time. And a lot of these things are just led off of this frustration and this lack of communication. Like, do you have any suggestions? Like, how do we handle that?

Willa V: 17:04

Yeah, you know, it's, I think that something, so this is where education is also important, not only for you as the survivor, but also for family members, right? I think it's really, especially if brain injury is something new to you, right? Something that you've never experienced before or have not experienced yourself. Um, It can often be frustrating and we get the misperception that like, oh, this person's doing that on purpose. You're not doing it on purpose, right? Your brain has changed. Your brain chemistry has changed, right? Um, and so oftentimes when I work with family members and I get a sense that there's frustration of they're just doing this on purpose or, you know, they're, they know what I'm saying. They're just not listening to it. You know, it's kind of taking a step back and say, you know, their brain chemistry has changed. They, they have. damage in certain areas that makes it harder for them to communicate or, uh, do some of these things. And so it's not personalized, right? It's something that just, it, it happens. Um, and there's, when we recognize that it's part of the brain injury, then we can say, okay, well, there must be another strategy to think about this, right? Um, and so with, uh, emotion regulation, I think is one of those really big changes that, again, it's not really, outwardly visible. Um, it's kind of invisible, right? Our emotions itself, it's, it's intangible. We can't touch our emotions, right? Um, and so when we lose that ability to regulate our emotions, it can be really unnerving. Um, and so to recognize again, that that can be the nature of a brain injury, right? Um, that there are, so if we think about our brain does everything for us, It helps us move, it helps us talk, it helps us, it actually forms our personality, our behaviors, all those different things. Um, and so to recognize that if there's an effect on the brain, some of those things can change. Um, and the way that we regulate our emotions is one of those things. And so, um, You know, first off, I think it's really important to be able to identify your emotions, right? Be able to label them. And so, um, whether you're starting to say, you know, I feel sad, I feel happy, I feel this. Or if you're not able to identify it, having someone who can help identify it for you saying, you know, you said this, or you acted this way, I wonder if you're feeling sad. So that way you can start recognizing what are those emotions that you're having. Um, I think another way that can be helpful to reduce kind of the volume of emotions that you might have is really engaging in relaxation strategies. Um, and so these might be familiar to a lot of people listening here. I'm sure you've heard all of it. Deep breathing, grounding techniques, progressive muscle relaxation. Um, it's not only about using those techniques in the midst of it. It's really about using them regularly throughout the day to keep that stress level low, to keep that frustration lower, um, to prevent from boiling over. And so those are definitely some things that, um, have been really found to be helpful. As you know too, I'm sure, frustration actually makes things worse. Right? You're trying to find the right word to say and you're frustrated. Well, guess what? You're not going to come up with that word. Um, and so being able to recognize, okay, I feel frustrated. Let me take a step back. Let me take a couple of deep breaths. Um, and it can be easier to then come up with whatever it is that you were trying to express.

Kezia: 20:28

Yeah. Thank you. Yeah.

Carrie: 20:29

And that kind of brings me back kind of to my other question, because it is that. That word finding is a big, a big issue for a lot of brain injury patients. So I had, I had a member that he's like, he's like, it's proper nouns for me. It's proper nouns. It's names. It's street names. It's like, you know, I can't give directions because I know exactly where I'm going, but I don't remember what that street name is. I mean, you know, and we all, everyone says, oh, well, I always forget people's names. Again, like I said, it's different when it's brain injury. I mean, but so, um, are there any. Ways to kind of help explain, you know, to help learn, re learn those that really is, I mean, it would work probably for everybody, but that, you know, that, so I can remember proper, names, street names, whatever kind of name it may be, you know, even, um, That's a bottle of water, not a glass of water, you know?

Willa V: 21:24

Yeah. So, you know, with word finding, I think there's usually the focus is on finding that specific word and over time, after you've had a brain injury and you're realizing that word might not come up for me. So that's an adjustment, too, of being okay with that. Being okay with the fact that that right word, exactly the word I was thinking of, may not come up. Other ways, though, to still try to allow it to come up would be talking around it, so describing it, right? Um, giving context to it. So, like, coming up with a, the name of the restaurant that you went to last week, right? Um, if someone else can be around you or you yourself can be like, you know, we were at this restaurant, it was on this street, we had this to eat. Um, you know, I was with this person. Oh, it was this, right? So that can be context. The other though, uh, the other benefit though, of kind of using that talking around and describing it strategy is that even if you don't come up with a word, that person that you were, that you are talking to, could actually still kind of figure out what you're saying, right? They might be able to come up with it for you, or they might say, Oh, I know what you're talking about. I know where that is, but I don't, I don't, I don't know the word either. You can still have that conversation continue to flow, right? Um, word substitutions aren't too bad. Um, you know, sometimes they might not be the exact word that you're looking for. And again, that does take some adjustment to being okay with that. Um, I think the goal, when you think about the goal of communication is to really have your thought expressed. Um, it helps to kind of, to help, it helps to really allow yourself to adjust to that recognition that the word itself might not come up, but I can still have these conversations and have them flow like normal.

Kezia: 23:07

Yeah, and I love right now what you're talking about because it definitely reminds me, like, these types of conversation, I bring up my family a lot and like my friends because they were very supportive But what happens when you're having these conversations with people that you're probably barely meeting like the first time, you know we have these types of conversation when people get a job and do well, you know, yeah interviews and stuff so that's kind of different but when you're trying to establish a new relationship like, how do you do that? Like, like,

Willa V: 23:37

yeah, yeah, and I think that's also part of kind of that, that decision that, that can be very individualized, right? Like, is, is that something that I want to be able to talk about with this person? Do I see a future with this person? Is this my employer who kind of needs to know this stuff, right? And so I, I think that that first, it comes off as Uh, first is kind of self reflecting on what do I need from this interaction or relationship? And that can also help determine, okay, well, I'm going to need to work with my boss and they need to know what accommodations I need. So I should probably disclose this, um, or if it's someone that, you know, is staring at you at the grocery store and you're like, why are you staring at me? Right. Um, does that person, do you owe that person explanation? Probably not, right? Um, and so for those who you're wanting to establish new relationships with, um, you know, I think it also depends on how much of the disability and the brain injury is part of your identity. Um, and if you want to be known as a whole person, who also happen to have a brain injury, um, and you're trying to establish a relationship with that person, then I think that is, um, that can lead you into, well, maybe, you know, what's, what's the best way to say, hey, I'm, I have a brain injury, but you know, um, this is how I live.

Kezia: 24:51

Yeah, that's very true. Thank you for those tips. Yeah, absolutely. Yeah.

Carrie: 24:57

Um, I know we're running out of time, but I have another question when it comes to communications that I have found, um, really weird. And I'm sorry, I'm losing my headphones. They're slipping off my head. So if, if I do something funny, people, I'm sorry, but yeah, I can feel them slipping off my head. I don't know why. Um, social clues. people do, after a brain injury, we just kind of. Some people just lose that ability to read the room. To know, I'm about to say something inappropriate, I need to shut my mouth. But after a brain injury, sometimes we don't know how to shut our mouth. And we blurt out really inappropriate things. Any tips on that?

Willa V: 25:34

Yeah, so I think one thing to also get, again, having that self compassion of like, sometimes, you don't control everything the way that you used to, right? And also, again, this is where other family members or friends who know you well, like, okay, this is part of the brain injury. This is not you trying to be inappropriate or this is not done on purpose or anything like that. A lot of times those, you know, things that come out of our mouths, especially if they may not fit that context, It's not necessarily that you're meaning to be inappropriate, it's more of an impulse control thing. Um, and so part of impulse control is things that just happen, right? They just happen right away. Um, so when in a situation where you're talking with people in a group or making an announcement and whatnot, um, before you say anything, it could be helpful to literally announce it and say it out loud of, I have something to say. Pause. That'll give you some time to think about it, right? Cause again, impulse, it just happens, right? But if you, if you open it up and have a pause and slow down with what your, what your thought processes are, that can help you rethink it. Um, and so when you say, I have something to say, you pause and you're considering, is this, is this the right place to say it? Are these the right people to say it around? Um, am I around people who I trust, who I don't mind, who hear my inner thoughts? Um, that can help kind of gauge, okay, well, let's see, what do I actually want to talk about here?

Kezia: 27:01

I love that. The pause part. The pause part is really important because I feel like I can talk forever and sometimes I'm like really fast and I'm like, wait a minute, wait a minute. I said a couple, like not only the inappropriate parts, but like saying the wrong words. So I, I love that tip. Um, I do want to just inform all of our listeners, uh, that we will have Willa back for the next episode and we'll have a lot more, uh, tips, uh, about, uh coping, So we're going to love that conversation, but unfortunately we have to cut this one a little short on our on on this conversation, but I want to thank you for being here and getting to meet you in person. It was a great conversation. I feel like we talked about really important things that we all need to learn about. Yeah, absolutely.

Willa V: 27:48

Love being here and I'm super excited to be back.

Carrie: 27:50

Great. And again, we want to thank all of our listeners for listening. If you'd like to contact us, again, you can contact us at bindwaves@thebind.Org. Um, you can follow us on Instagram at you know where,@bindwaves. And again, you can just visit our website at the thebind.org/bindwaves. And if you're interested in becoming a member or volunteering with our organization, all of that information is on the website as well.

Kezia: 28:18

And just don't forget to like and follow us on all your social media platforms, especially YouTube, where you can see our faces. So if you're just listening to us, you can find us in person on YouTube. And just click all those like buttons.

Carrie: 28:33

And again, remember, our episodes air every Thursday, and we're available on all your favorite platforms. So, until next time.

Kezia: 28:39

Until next time.

Speaker 2: 28:41

We hope you've enjoyed listening to BIND Waves and continue to support BIND and our non profit mission. We support brain injury survivors as they reconnect into the life, the community, and their workplace. And we couldn't do that without great listeners like you. We appreciate each and every one of you. Continue watching. Until next time. Until next time.