The Kristen Toepfer Podcast Stroke and Aphasia Advocate

What Is Aphasia? — Inside the Condition Nobody Talks About

The Kristen Toepfer Podcast Season 1 Episode 2

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0:00 | 42:22

Most people have never heard the word aphasia — and that’s exactly the problem. In this episode, Kristen Toepfer breaks it down from the inside out. Aphasia is a brain disorder that affects a person’s ability to speak, understand, read, write, and even process numbers — and it affects millions of stroke survivors who are left to navigate it with little public awareness and even less understanding from the people around them.

Kristen gets real about what it was actually like to lose language completely. For two years after her stroke she couldn’t talk, couldn’t use a phone, couldn’t get on the internet — she sat in her backyard and watched birds because that was all she could do. She describes the disconnect between having a sharp, fully functioning mind and being completely unable to get a single word out of her mouth. Her thoughts were all there. Her voice was not.

In this episode you’ll hear how speech therapy works from the beginning — learning associations all over again, starting with baby books, sounding out syllables like a child learning to talk for the very first time. Kristen also covers physical therapy, occupational therapy, and what spasticity actually feels like when your arm gets locked and you have to fight your own body just to move your fingers.

And true to the spirit of this podcast — from the funny to the yucky — Kristen shares the story of accidentally buying what she thought was a cart full of $2 items on Amazon, and the time her aphasia had her walking into the men’s bathroom more than once. Wearing a helmet.

This episode also covers stroke prevention — including a smoothie recipe Billy swears by, why you need a blood pressure cuff at home, and why by the time you feel your blood pressure it may already be too late.

Honest, educational, and at times laugh-out-loud funny. This is what aphasia really looks like.

Subscribe, share, and follow Kristen’s journey at kristentoepfer.com

Join Kristen and cohost Billy Montana for monthly episodes filled with advocacy, education, and inspiring conversations.

Together, let's raise awareness for stroke and aphasia and support each other on the journey to recovery.
http://kristentoepfer.com

SPEAKER_05

Hey everyone, welcome to the Kristen Topfer Podcast, Stroke and Aphasia Advocate from the funny to the yucky. No holding back. How's it going, Kristen?

SPEAKER_01

Hi.

SPEAKER_05

How are you today?

SPEAKER_01

Good.

SPEAKER_05

Awesome. You look great.

SPEAKER_01

Thank you.

SPEAKER_05

So this is our second episode. And what we want to do is we want to talk about aphasia today. The focus is going to be on aphasia. So tell us a little bit about aphasia for people that don't know what aphasia is.

SPEAKER_02

Aphasia is a brain disorder, and basically it helps, it prevents you to it's a communication. It prevents you from communication with someone else. Numbers and hearing along with speaking.

SPEAKER_05

So how did you recover or how are you dealing with aphasia now? Like how does it how did you overcome the point where you couldn't talk to now you can?

SPEAKER_02

It's also hard work. Well now, since it's hot, um, I'm finding it harder to be. It's harder to find words and it's harder to to find talking, uh typing. It's if other people I for my for me it's hard when it's hot.

SPEAKER_05

So when the weather's warmer, it affects the aphasia.

SPEAKER_02

Everything for me, it's hot. Yes. Um if I if I'm if I don't sleep, forget it. I'm not functional. More than usual.

SPEAKER_05

So is it the heat that causes you not to be able to sleep? And is it the lack of sleep, or is it the heat?

SPEAKER_01

I don't know. Both.

SPEAKER_05

Both? Okay. Um, but what happened to you when you were able to like when you couldn't talk and then you started to talk? Is it because you went to therapy, right?

SPEAKER_03

Oh, yes.

SPEAKER_05

Okay. So what kind of therapy do they offer you to help you that you've been able to overcome a lot of this and you've been able to talk and you've been able to model and stuff like that?

SPEAKER_02

They they help you in the beginning, they help you sound out num the numbers that um like uh and then all they they the basic, just the very basics, just like kids are toddled, everybody, the long younger kids, you're you're learning how to talk from the beginning. Little yes, you're learning how to talk from the very time, like right from the beginning.

SPEAKER_05

Question for you. So if I'm sitting there and to me everything is natural, right? So if I sit there and say car, I know what a car is. So is this like starting over from scratch, like almost like a baby, like where you have to learn what a car is again, or like if somebody said to you, hey, let's get in the car, did you know what they were talking about?

SPEAKER_02

Well, if I if I I would just be like, um the wheels. I would like well, my husband knows now, like everything I all right. I'll he'll know like what I'm trying to say. I'll be like, let's go on the wheels. Like he'll know. All right, he knows that I'm trying to say car.

SPEAKER_05

Right. Right. So basically, it's like starting all over again. You have to learn how to speak again, but you also have to learn what certain words mean. Like you have to like reintroduce yourself to things that you knew your whole life, whether it's a car or a train or a plane, anything like that. You had to learn all that stuff all over again, right? You had to have those associations in your head.

SPEAKER_02

Right.

SPEAKER_05

Yes.

SPEAKER_02

Associations.

SPEAKER_05

Yeah.

SPEAKER_02

Or you just make the stuff up.

SPEAKER_05

Right.

SPEAKER_02

So learning a new language, I guess.

SPEAKER_05

Yeah, it's like learning a it's starting over. Yeah. So you're able to speak fluent Spanish now? Not yet.

SPEAKER_02

Might be easier.

SPEAKER_05

All right. Uh so they start off with therapy and they teach you associations. And how do they do that? Do they do that with like a picture of a car and then say car and then have you pronounce the word?

SPEAKER_03

Yes.

SPEAKER_05

Okay. And then they sit there and they do what after that? Do they sit there and like just help you sound out the syllables and the sounds of how to pronounce the word?

SPEAKER_04

Mm-hmm.

SPEAKER_05

Okay. So how long did that take you to that you could start speaking in like sentences again and communicating properly? Like, was it a how long of a therapy was it? Was it two years, three years, like how long?

SPEAKER_02

Well, when I sp when I started the first time, it was easy. But then when I had the first surgery, it was it was easy. And then I had the first second brain stagery. That's when I had to start all over again, like from scratch. And then the weird part is when I had the the second, the third surgery, I kept coming back with different bludders. Like I one day when this I would go come from W's were bad, and then R's were bad. Like each time it was like it would just weird.

SPEAKER_05

Yeah, no, it's uh that takes that's a lot of work, and I'm sure it could be very frustrating for you. But what I want to ask you is did you did you forget moments of your life or like did that have to come back to?

SPEAKER_02

Um I don't remember I don't remember the the one runway show.

SPEAKER_05

Okay at all.

SPEAKER_02

Probably that and well vaguely I do I do because I had pictures.

SPEAKER_05

Right.

SPEAKER_02

I don't remember the actual pretty much the month before that. I don't remember not much, probably much the the covering because I kept going in and out of surgeries.

SPEAKER_05

Right.

SPEAKER_02

And my short-term memories kind of meh because of a lot of the the drugs I was on, and so much anesthesia, and right my brain probably um protected me from a lot.

SPEAKER_05

Yeah, I would imagine that so when you had this and you weren't able to talk, like your memories, were they just pictures or like because if I think of a memory, I think of a time, but I also like will remember like maybe a conversation, and I could so with you, was your memories just pictures in your mind more than they were because you didn't have the the words in there to fill in?

SPEAKER_02

I can talk to myself, right?

SPEAKER_05

But you just so you could it was just a matter of pronouncing the words and getting the words out of your mouth properly and relearning. Okay. So when you say you talk to yourself, did you talk to yourself like me and you were talking? Like me and you were talking?

SPEAKER_02

I could talk and like I didn't have I could stay, I could say it right in my head. I just couldn't say it out loud loud.

SPEAKER_05

Okay, yeah, I understand that. Um I think it's important that we let the audience know that the things that you go through because it's very difficult. So, and it's a very long time. So, how long did it take from the time when you couldn't talk, starting with therapy, to the time that you were able to get sentences out?

SPEAKER_02

I don't know time.

SPEAKER_05

So, do you think it was like a year? You don't know what kind of therapies did they offer you? So you said that one, they helped you with speech therapy. Um how about like physical therapy and even reading?

SPEAKER_02

Physical therapy and uh occup OT occupational therapy? Because I in the beginning, this my arm was just like this. Like I couldn't move this at all. My well in the beginning, this this right, left. I keep getting confused. But I was completely paralyzed on the uh the other side of the rate.

SPEAKER_05

Which one were you completely paralyzed with?

SPEAKER_02

I was both paralyzed on both sides when I came out of the coma. Okay. Both both sides, but then I got better on the good side, but the stroke side was bad for a while, a long time.

SPEAKER_05

Which is the side that was bad? Hold up the omelet where it was bad. This is my stroke, this is my stroke side. Okay, that's your right. Yes, yeah, so you're right on okay.

SPEAKER_02

And I'm doing I'm doing better, a lot better. Yeah, it's numb, but it's better.

SPEAKER_05

Yeah, and so physical therapy helped you with that?

SPEAKER_02

Yes.

SPEAKER_05

So, what kind of exercises did you do for physical therapy?

SPEAKER_02

Balance, balance stuff is very good.

SPEAKER_05

And how did you do that? Did they have you like how did they help you with balance? What kind of exercise did you do for balance?

SPEAKER_02

Um like a a board and you go back and forth like a teeter totter.

SPEAKER_05

Okay. Yep.

SPEAKER_02

Um basically just balance things like going just doing things on shifting.

SPEAKER_05

Shifting, so side to side type stuff.

SPEAKER_02

Right, and then while walking, pushing back and forth, because balance is like everything, kind of.

SPEAKER_04

Yeah.

SPEAKER_02

Being I have the very expensive head. You don't want to mess with that.

SPEAKER_05

Yes, I know. Okay. I don't know, but I know from what you tell me. Um all right, so now that's basically what they work with you on physical therapy, is a lot of balance stuff. Anything else? Like, was there any other kind of things that they would do, like any kind of lifting weights or trying to like you know?

SPEAKER_02

My it's my my leg is and my ankle is very weak, so I have to on my my leg um because uh atrophied. This side was atrophied because I wasn't using it for a while. So this whole side had to work hard because it was atrophy muscle. So and then OT does my arm because this my fingers were just numb, so I had to keep trying to get each finger to start moving.

SPEAKER_04

Okay.

SPEAKER_02

Still working on my pinch. Do they and the arm, you know, with this just you have to work on each I had I had to essentially teach my joint and arm to move again. My brain had to tur teach my bro, my body to move again, each little thing. Okay, because that my g my brain didn't know anymore.

SPEAKER_05

Yeah. And that's that's important to let people know that this is a very long and tedious process, but you gotta do it. So now tell me about so they gave you speech therapy and tried to get associations back and speak again with your volume and everything else. Then they did physical therapy where you had to do a whole bunch of different things for balance and teaching your mind how to do certain things again, right? And then so you had the physical therapy, which which included balance, teaching your mind how to control your hands, right? And did they have you do any weight training? Okay, so you did some weight training.

SPEAKER_02

My body is two different people because it's nothing is the same. There's no similar nothing is it's two my body looks like two different people.

SPEAKER_04

Right.

SPEAKER_02

Because it's I don't know how to explain it.

SPEAKER_05

And how often do you go to physical therapy now?

SPEAKER_02

Do you something that you do every day or a couple times a week or they're my they're my angels, those it's um I go to Hackett's town hospital and they they taught me how to to speak again and walk and talk. I said that anyway, and every time I have to go back and start over again, and I still I still go and they they help me because every time I have a bad seizure I get to start over again.

SPEAKER_04

How often all the different things I need.

SPEAKER_02

Um I I still go um whenever I when I go to their to their gym now because I can't go by myself. And I try to go every day.

SPEAKER_05

Oh good. Do you have anything at home that you do at home each day?

SPEAKER_02

Um when it I first started, I would buy everything they had, and I would work work on it by myself just to keep reproving myself.

SPEAKER_05

Yeah, and I bet that helped a lot. Yeah, well, that's important, right? Because the more you work on things, the better you get at it. So I'm sure that sped things up for you.

SPEAKER_02

I'm just that stubborn to not give up and then just kept going.

SPEAKER_05

Oh, good. That's that's what makes you you, right? That stubbornness has gotten you through all this. Yeah. That inner fight, that inner drive.

SPEAKER_02

What else are you gonna do?

SPEAKER_05

Yeah. Okay, so what about reading? How did you how did they help you at reading?

SPEAKER_02

Well, um reading is it's hard because it you're just so tired and it's not fatigued, I should say. Um look what people don't understand is when I'm well with aphasia, when I'm looking at a number, more looking at well, I also like when the time I use books, little books. Um I do cursive, even though there's you gotta start from the basics, even though nobody uses cursive anymore.

SPEAKER_05

I do.

SPEAKER_02

I use dot, I do dot to dot and then I color it.

SPEAKER_05

Oh, great.

SPEAKER_02

Um, what are we talking about again? Math. And I was using it for Lori example.

SPEAKER_05

So it's basically like going back to school again, right? Like you have to learn math all over again and uh numbers and reading.

SPEAKER_02

We're talking about numbers when I if you Ask me to point at a number at a number, I might point at a different one. Like I see four, but I'll say seven. It sucks. And then it could do the same thing with letters. So that's frustrating.

SPEAKER_05

How do they teach you how to read? Like, because when you look at stuff, do you remember like words, or is it all kind of you had to relearn how to read from the beginning?

SPEAKER_03

You have to re relearn it.

SPEAKER_02

Start with the and just go along, start with baby books.

SPEAKER_05

Yeah. So people really do not understand how what a journey this has been for you and what you had to overcome to get to the point where you are right now.

SPEAKER_02

My first one book that I completed was those goodbye, goodbye noon, or what was it? Goodbye. It was one of those like little books that like baby books. That's where I started. My nephew helped me.

SPEAKER_05

That's great. And you got a great nephew from what you tell me. So your nephew's gonna help you write a book, right?

SPEAKER_03

Yes.

SPEAKER_05

Yeah. And that's great because people really need to know what this is about and what you go through. And it's not easy and it's very frustrating, it's very time consuming, and it's like so much work just to get back to being able to talk to people and to communicate properly and everything else. So, you know, these kind of things you have to just realize that it's not an easy thing. So, for people out there who don't know or are new to this, they need to understand that this is what happens. It's they're not they're not alone in this. They know that they don't know, but they should know that this is a journey and it takes time and it takes effort, and you gotta fight through all this stuff. And so many times it could just be like frustrating that you don't want to try anymore. Have you ever gotten to a point where you didn't want to try anymore?

SPEAKER_02

Yes, and then I'll just like cry it out a little bit and then keep going. If you get frustrated, you just start in the morning, and then like I what I did was I never stayed in bed, I always got up and went downstairs and just get on with the day. If I didn't all I if all I did was walk to the mailbox, I did it. That's that was my goal for the day, and that's it. That's all that's all you need.

SPEAKER_05

One thing baby steps, one step at a time, right? One day at a time. Were there any time that you thought that you were wasting your time that you thought that you were not gonna get any better?

SPEAKER_02

Um well, I know I knew it wasn't gonna get better, but I thought I knew it was gonna get, I didn't know how bad it was going to get. So I just kept going so I didn't have to be that bad. I guess that's it. So when you I didn't want to end up in a wheelchair, so that's how so that was your motivation.

SPEAKER_05

The motivation was you didn't want to end up in a wheelchair. Okay. So people that are experiencing what you've experienced, they should find little motivations to keep them going, whether it's like you and wanting to be able to walk uh and not be in a wheelchair, or it could be something else, right? Like they want to be able to maybe go on vacation or go someplace, and they can't do that if they're in that situation, right? So frustration is a very big part of this, but also um when you go to so when you go to therapy, is it something that you look forward to? Is it something that's like, oh god, I gotta go to therapy today. I don't want to go, I don't feel like it.

SPEAKER_02

Um I had a I had great therapist. Even when I was in rehab, in internal rehab, I had great therapists, and I had a good really great therapist. Um I've seen all of them. So if I didn't like the therapists, I wouldn't have gone. And that's the truth.

SPEAKER_04

Right.

SPEAKER_02

Because then you didn't want if you didn't, if you don't want, if you don't want to be there, you're not gonna you're not gonna get anything done.

SPEAKER_05

Right.

SPEAKER_02

So if you don't like work what you're doing, then you're gonna waste your time.

SPEAKER_05

For you, was it um did you feel enthusiastic, or you just felt like I don't want to do it? And then when you were there, were you engaged or were you bored, or what what kind of things that you experienced when you were actually in therapy?

SPEAKER_02

Um I told them, I was like, if you're bored, just beat on me. So there were times give me more, give me more, I want to do more.

SPEAKER_05

Did you ever get bored?

SPEAKER_02

Um no, because I want to do more. If I'm if I'm bored, then yes, if I'm bored, then I won't do it. So they made it harder for me.

SPEAKER_05

Okay, but then making it harder for you actually helped you improve.

SPEAKER_02

Exactly.

SPEAKER_05

Right. You know, the podcast is titled From the Funny to the Yucky, no holding back. So with aphasia and your therapy that you've been through, tell me something that has been funny, funny, all right.

SPEAKER_02

So when I finally got on the internet, I wanted to look at Amazon because who doesn't? So I went into I started to buy things for my my therapy room. And since I didn't know numbers, I was like, oh, this is two dollars, and I was like, oh man, this is two dollars too. Oh my god, this is two dollars too. So I started buying all this stuff, and it was all two dollars.

SPEAKER_05

That's crazy, huh?

SPEAKER_02

Now everything's fifty dollars.

SPEAKER_05

So everything is so all these things that you thought were two dollars were not two dollars, they were like fifty dollars.

SPEAKER_02

But for real, everything now is fifty dollars.

SPEAKER_05

So everything was fifty dollars, yeah. And you thought it was two dollars.

SPEAKER_02

No, now it's fifty dollars.

SPEAKER_05

Oh, so it was two dollars when you first started off.

SPEAKER_02

Now it's fifty dollars. Every time I tell my husband, I'm like, oh, but it's fifty dollars.

SPEAKER_05

Yeah, that's a lot. Um all right, so what about the yucky? Give me a yucky experience from your therapy.

SPEAKER_02

I don't know. Well, and I couldn't spell or anything. So if I went to the bathroom, I I didn't know if I was going into the men's or the women's room. So I've I've gone in the men's room. I used to get go in the men's room a couple times. So that was that was kind of yucky. But especially if I had my helmet on.

SPEAKER_05

Wow, did you have anybody run out of the bathroom when you walked in? Like, what is she doing? Yeah, that's funny. All right, and I guess that's kind of yucky. So, one other thing that we need to talk about as far as therapy goes is occupational therapy. So, what is the occupational therapy?

SPEAKER_02

Um the the occupational therapy is for my that I had it was for my wrist. Um that's when it you start. Well, mine like mine was um like my I know you see a lot of people that stroke and their their arm is stuck like this and like like this, right? So that's your war like you have to start working it up here, and then you have to start working it here all the way down because your shoulder is stuck, like everything is stuck, and then it's called this and it's called spasticity when you start working it and then you're like this like it just stuck um rigid movements, right?

SPEAKER_01

Like it it's a whole it's a whole um painful thing, it's a whole journey.

SPEAKER_02

It's a whole journey that you have to go through, and sometimes it takes years and years to make it through, go through the um process. I mean, I just beat the crap out of myself just to make it like I'll just every when we're just sitting here, I just we're still doing it. I just keep going like this over and over all day just to keep it moving.

SPEAKER_05

So I have something that I came up with that I've watched on YouTube, and it's a smoothie that will help people keep their arteries clean, um, which will help them and help them prevent them from getting a stroke, a heart attack. And then so for the people out there who have not had a stroke, this will help you prevent the stroke. And if you've had one, it'll help you keep your arteries clean, and it's very healthy for you. It's got anti-inflammatories in there, um, purifies your blood. So here it is. So get a smoothie. Here's the ingredients. The ingredients are one inch of turmeric root, one clove of fresh garlic, one apple cut up, and then we want to put in extra virgin olive oil, a teaspoon of extra virgin olive oil, one half of a lemon squeezed juice, then take a dash of cayenne pepper as well as a pinch of ground pepper. Put that in a blender with half a cup of water, and put it in a high-speed blender, blend it, and then drink it. Now, a lot of people are gonna say, oh, that's gross, da-da-da, you know, clove of garlic. It's not that bad. I've had it, it's very good, and I feel the difference in my body. So give it a shot, it'll help you, seriously help you. Because you don't, that's what this whole platform is about. It's like we don't want to have strokes. So if we could prevent it by what we eat and stay away from high sodium foods, so always kind of check your sodium content as well, and also check your blood pressure. Now you could go online and you can get blood pressure cuffs. Do you have a blood pressure cuff?

SPEAKER_02

No, yeah.

SPEAKER_05

How often do you take your blood pressure? And the little finger thing that has your pulse, pulse and oxygen? Yeah. So how often do you do your blood pressure every day? Twice, three times?

SPEAKER_02

Then I start getting lightheaded or dizzy.

SPEAKER_05

Yeah. What's your what's your blood pressure normally now, now that you've had the stroke and stuff? What is what is your normal blood pressure at this point?

SPEAKER_02

Well now they took me off one two pills a day. One day.

SPEAKER_03

Yeah.

SPEAKER_05

Well, that's good. I have a blood pressure cuff too, so it's important because you don't feel it. There are times when you could your blood pressure is very high and you really don't even feel it. You don't know.

SPEAKER_02

It's too late when you start feeling it.

SPEAKER_05

Yeah. Yeah, exactly. So people need to be aware. So get your blood pressure cuff, check your sodium level each day, what you're eating, and try to put healthy things in your body. Like turmeric is an anti-inflammatory, and garlic is very good for your heart, your blood sugar, uh, extra virgin olive oil. More and more people are taking a shot of that, or just taking like a teaspoon every morning before they eat anything, because it does so many great things for your organs and your blood. So guys gotta just, it's knowledge, you know. The whole thing is knowledge. Like the more knowledge you have about something, the more control you're in, and then the then you control your luck, right? So have you changed your eating habits?

SPEAKER_03

Yes.

SPEAKER_05

Do you go to McDonald's every day?

SPEAKER_02

No. I don't have a car.

SPEAKER_05

Oh, so you don't door dash it?

SPEAKER_02

Yes.

SPEAKER_05

No, so what's your diet like now?

SPEAKER_02

I've changed um white to meet whole whole green. More vegetables.

SPEAKER_05

More vegetables, yeah. That's a good one. More fruits, yeah. What kind of fruits? You know what?

SPEAKER_02

I said more bro boring things.

SPEAKER_05

Yeah. So what do you normally like? What kind of fruits do you like to eat now?

SPEAKER_02

Pretty much I'm I eat like a ki kindergarten. Um, everything's plain. I order off the kids' meals pretty much everywhere I go.

SPEAKER_05

Well, that's good. You look great.

SPEAKER_03

Thanks.

SPEAKER_05

You probably look better now than you've looked since it's all happened. And that's a good sign. That means that things are going well, you're improving, and everything's great. You've been modeling again.

SPEAKER_02

Yeah, I okay. See you September.

SPEAKER_05

I'll be there. New York Fashion Week 2023. Here comes Kristen. Yeah. Is there anything else you have to say to people that might be going through this before we close out?

SPEAKER_02

Uh if you can start, you can um join the face group groups, the stroke ones. You just can't it it gets overwhelmed. Um when I first started, uh it is overwhelming, but it could help. I just I couldn't really read good or type, but it's you could just kind of be there, and you can I don't know what I'm saying.

SPEAKER_05

Well, also, too, we have your website that's out. It's Kristen Topford.com. And we are also going to be on all streaming platforms for this podcast. So check it out. And always please subscribe to the YouTube channel, and we will be doing a podcast once a month, and it will stay up there so you could watch previous episodes, and hopefully, some good will come out of it. And thank you, Kristen, for sharing your story. You are a great success story, and it's so inspirational that you are out there right now, you know, going through this journey and trying to help others and be the advocate that you are, and you are truly saving lives now.

SPEAKER_01

So thank you.

SPEAKER_05

Well, have a great day, and we'll see you next time.

SPEAKER_02

Okay.