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E16: Advocacy in Aphasia By Your Loved One and For Your Loved One

Listening and giving time and space for your loved one with aphasia to communicate is key for their confidence, inclusion, and life.

ASK THE PERSON WITH APHASIA HOW THEY WOULD LIKE FOR YOU TO ADVOCATE FOR THEM

"You should be advocating every day in every situation, not only for yourself but for your spouse or your friend or your partner." - Aurora

Advocating for a person with aphasia is tricky. Find out their wishes. You may have to do some detective work to understand how to help them the way they want to be helped.

🌟  Graduate student Aurora Azevedo gives us insight into one of her clients and how he was empowered to advocate for himself.  🌟


KEY POINTS FROM THIS EPISODE

STRATEGIES FOR ADVOCACY

  1. use an aphasia card
  2. use an aphasia book with interests
  3. verbal communication
  4. gestures
  5. learn how to give an opener for the person with aphasia to communicate
  6. consciously incorporate these strategies into different situations
  7. give more time
  8. keep it simple
  9. give choices
  10. ask one question at a time
  11. pause and wait for a response (remember, silence is golden!)
  12. don’t interrupt

LINKS FROM THIS EPISODE

➡️  RoadID.com 

order a road id bracelet for medical information
Get your Road ID in a bracelet or smart watch attachment

➡️ Texas Communication Impediment Document

➡️ Texas Communication Impediment Application

TRANSCRIPT

"You should be advocating every day in every situation, not only for yourself but for your spouse or your friend or your partner." - Aurora

"To be a good listener: We need to get comfortable with silence. Not every moment has to be filled with a word, with a sound, with humming, with anything. Sometimes just silence and waiting patiently and breathing is just enough to get that person with aphasia to be able to successfully get their word, their thought, their concept." - Genevieve


A to the 4th Power: APHASIA ADVOCACY WITH AURORA AZEVEDO

Genevieve: Good afternoon, Aurora. Thanks for coming on today.

Aurora: Absolutely. Thank you for having me here and having this opportunity to talk about this amazing population. I appreciate it. I feel so privileged to be here with you.

Genevieve: You're awesome. So we were just talking before we hit the record button about what we're gonna call this. APHASIA ADVOCACY WITH AURORA AZEVEDO.

Aurora: Thank you.

Genevieve: Sure. Yes, this is gonna be great. So just a little behind the scenes. You and I met this summer because you had a summer program down at UT Health in San Antonio, the Communication Sciences and Disorders Program. Tell me, in general, what did you think of that two-week intensive aphasia session?


AURORA'S EXPERIENCE AT UT HEALTH IN SAN ANTONIO

Aurora: Well, it was quite a privilege to work with these individuals and to be a part of this was their second or third year, I believe, having this aphasia group. And we got to see a lot of lovely people. The session that we were in had a variety of different types of aphasia.

The next group that came in after us all had Primary Progressive Aphasia. So they had a little bit of variety for everybody. And it was so nice to see everybody coming together and just having this community in a safe place where they could meet other people who had the same difficulties that they shared with each other.

And not only was it for the individuals with aphasia, but we also had the opportunity to work with the families and do a little bit of family counseling and therapy, as well as some strategies on how to work together and find resources. So it was really amazing.

Genevieve: I just keep talking about how wonderful the program was for the two weeks we were there. It was intense. An intensive and huge learning environment and all the folks with aphasia that left were like, 'we want more!

Aurora: Yeah. And the good part about it is we're doing something about that, and we are doing more. We're actually extending our program to not just be a summer program. Still, each month we're gonna try to have another session where we can get together and have a large group with everybody who has participated or more people who want to participate. So, coming soon, there are gonna be monthly meetings for everybody to kind of come together, learn strategies, work with the grad student and find resources. Good days to come.

Genevieve: It is, you know. And that's the other thing I love about UT Health.

It's a pretty new program, but the professors there are working really hard to innovate and think outside the box, and they are evolving too. The program's evolving. It's really exciting.

Aurora: Yeah. So more to come.

Genevieve: More to come. So we're gonna talk about APHASIA ADVOCACY specifically today. Now, how did this come up in the summer program?


APHASIA ADVOCACY IN UT HEALTH'S SUMMER PROGRAM

Aurora: So basically, each week, we, the grad students, had a different topic to discuss, and each grad student got to pick their topic of choice, whether it be different types of strategies we can use in therapy or strategies we could use at home.

I personally was very interested in self-advocacy, and I think it's so important for people to advocate not only for themselves but advocate for others. So this was my topic of interest because I feel really passionate about this one. So yeah, that's kind of how it started.

Genevieve: What does that look like? I would like to take it from two perspectives. The perspective of the person with aphasia and also, and we'll wrap up our conversation with how does the spouse or family help that person advocate for themselves out in the community?


A PERSPECTIVE OF SOMEONE WITH APHASIA

Aurora: Yeah, absolutely. So starting off with the individual with aphasia, of course, they're gonna have experienced frustration and anxiety. They may have socially withdrawn, or they might be feeling inadequate in some ways because of this new language loss that kind of pulls them away from who they were previously, how they talk to other people, or even just basic conversational understanding. You might have Wernicke's aphasia, where you just don't understand what you're saying, and you might not understand what other people are saying. So it kind of takes you away from this connectedness within society and the people that you love. So, advocating for yourself is very important because no one's gonna be a better advocate than themselves. You know where you came from, and you know what your experiences are. And it's important to say, 'hey, I'm worthy, and I'm important.’

And this is why aphasia can take away your language, but it doesn't take away who you are. You still have those great qualities.

You still have those hobbies that you love to do. You still have your family that you wanna be able to connect with. It's also very important to kind of get involved in your care, know your professionals, and who you are gonna be working with. Is it the speech therapist? Is it gonna be the occupational therapist? Is it gonna be the physical therapist or even a psychiatrist or psychologist?


BUILD A STRONG TEAM OF PROFESSIONALS TO HELP YOU

It's important to know your professionals and build a strong team for yourself. That way, you can receive the best care available to you and make sure that you are rehabilitating in a direction that you think is most important to yourself because everybody has a different journey and everybody has a different experience with aphasia because not all accidents look the same.

Everybody has a different starting point, you know, and their accidents all look different. So, it's important to take this kind of cohesive collaboration amongst not only your past history but also your health and your medical history and kind of intertwine it into creating this new path for you.

And it's also important to stay educated and to use the professionals around you to kind of keep that education on what's going on. What direction are you going in, and where have you come from? Because that can also help motivate you to keep going because the progress might be little. It might be great, but again, everybody's journey's different, and you just gotta take control and tell people, 'Hey, I am worthy.


ADVOCATING FOR YOUR PARTNER

Aurora: And as far as the partners, it's great to advocate for your partners, saying like, you know, this is the person that I loved, and they're still the person that I love.

And they can advocate in any way, like going out to a restaurant and saying, 'let me have the conversation,' 'please listen to me, giving your spouse the opportunity to take their time with ordering whatever that they want or whatever food, no matter how many hiccups on the way. If the individual with aphasia wants your help, then, of course, be there to help them. But if that person doesn't want your help and they really wanna try, it's important to recognize that maybe I should put my feelings to the side and say like, okay, even though this might be a stressful situation, I need to reel it back in and just say, 'Hey, they can do it. I'm gonna let them do it, and we're gonna go from there.

So, sometimes it's just you wanna help, but it just depends on the person that you're with. Do they want your help? Help them if they do. And if they don't want your help, let them learn and let them be their own independent person.

Genevieve: Perfect. So let's take your client specifically. Obviously, we can't call him by his name. Although if he listens to this podcast, he's gonna know we're talking about him. So he was just a dynamo. Loved, loved, loved watching you and your co-clinician work with him. Tell us specifically, what was his advocacy statement?

How did he not only come up with the words that were his advocacy statement but how did he use them? How did he apply it?

AURORA'S MEMORABLE CLIENT AND HIS ADVOCACY

Aurora: So, he was very motivated. He was a great person to work with. I mean, he was such a doll. He did everything he could to improve where he came from and his accident. And so he was motivated throughout the entire thing.

But, we sat down, and we said, 'what is important to you? What do you want other people to know about you?' And he basically laid the foundation. Sometimes with aphasia, you wanna say something, and you cannot say it. And he thought it was really important that with other people, they needed to be patient.

And to just be quiet, giving him the time to say what he wanted to say. Be patient with him. Understand that certain situations, like being in a loud, noisy environment or having, you know, ten people around you talking and not giving you the chance to speak up, to just be cognizant and say, 'Hey, this person exists in this conversation, too.' Let me give them a chance.

And so he found it really important to, in his own advocacy statement, say, in noisy environments, it's harder for me when there's a bunch of people talking.

A PERSONALIZED ADVOCACY STATEMENT

    1. when you speak fast, it’s harder for me to understand
    2. listen to me
    3. give me the opportunity to be involved in the conversation
    4. silence is golden (or just shut up!)

It's harder for me when you're speaking fast; it's harder for me to understand. So give me a chance and listen to me. Give me that opportunity to take hold of that conversation and be involved. Because these were people he had been friends with for many years, and now he was sitting on the sidelines with aphasia.

It's so hard sometimes to jump in because your brain is going fast, but your mouth might not catch up.

It might not say what you wanted to say, or there's a misfire between what you're thinking and what's coming out, and in a high-paced setting, that can be even more difficult to be involved in the conversation. So, he thought it was necessary for people to understand to be quiet in a nice way.

He said it in a different way.

Genevieve: He did well. So what stood out to me is he said several things. One of 'em. I was an executive. Didn't he say I'm a genius? Genius. Yes. He also said silence is golden, and that was his funny way. He cracked up every time he said it, but that was his way of advocating for people to just be quiet.


OUR TAKE-HOME LESSON AS A LISTENER

And I think that's a take-home lesson for those of us interacting with someone with aphasia. We need to get comfortable with silence. Not every moment has to be filled with a word, with a sound, with humming, with anything. Sometimes just silence and waiting patiently and breathing is just enough to get that person with aphasia to be able to successfully get their word, their thought, and their concept out. What did he say? Silence is golden, or just shut up.

Aurora: Yeah, that's his favorite part.

Genevieve: That was his favorite part. So what was cool about him, in particular in this summer group, is he had to leave a day early cuz he was traveling, and he was able to present himself in his advocacy statement to the group. It was the group as a whole, all the participants and their families that were there, all the grad students that were participating, and he did a heck of a job.

Aurora: But he did have some hiccups along the way

Genevieve: He did, but you know what? That's life, right?

That's what you and I are doing right now. We are not polished broadcast journalists. We are life, you know, we are here for the right reason, but what I loved about him is, and what you and your co-clinician did with him is you walked him through, literally, what would he say in what situations and how would he say it as part of his advocacy statement.

You literally trained the generalization. He liked to go to happy hour every week or a couple of times a week with his longtime friends. You guys worked with him to get him to say his advocacy statement for that group of people.

You got him to make his advocacy statement with people that didn't know him. Like, 'just give me a minute.’ It was incredibly powerful.

Aurora: Absolutely. He had told us he felt so proud, and he felt so connected to finally be up in front of a group speaking again because he was a COO. He was a presenter. He had to speak to people. He had to speak in front of people. And so this provided him an opportunity to speak in front of people who had aphasia and to speak in front of a group of people who didn't have aphasia. And also told us that he went home, and during a family dinner, he said it in front of his entire family.

And that was just so important to him to be able to have that opportunity to do something he was able to do before and really shine.

Genevieve: His confidence. He came in as a pretty confident guy, but at the end of two weeks, he was just glowing with his confidence, and he felt like he could take it all on, and you guys gave him the tools.

You helped him find the words. Number one, you helped him apply it to different situations so that he could almost visualize it and see it happen in real-time. And I know his wife did attend his group talk when he gave his presentation, but she wasn't particularly, or specifically, trained. He could speak pretty well for himself.

But there were other participants there that we had to help train their person, their significant other, how to advocate for them. And what I saw was the caregiver. I'm just gonna say caregiver is the blanket word. It also needs that specific training. Here's what you can say in this situation, or here's what you can say in this situation.

SPOUSES AND CAREGIVERS NEED TO BE CAREFUL NOT TO TAKE OVER THE CONVERSATION FOR THEIR PERSON

Aurora: Absolutely. It can be hard sometimes to really make that connection because they're not the ones with aphasia, right? They're not the ones having to deal with that situation in every day to day conversation. And so they might feel the need to overcompensate or just try to take over the situation, and there are strategies out there. There are resources out there that you can find to help the caregivers really understand ways to help their specific spouse or cousin or family member the way that they need it, you know, the way that they would like to be helped.

ASK THE PERSON WITH APHASIA HOW YOU CAN HELP

Genevieve: I think it's always important to check in with the person with aphasia; if you're the spouse and think I should say it this way, check in with them first. Ask, 'is it okay if I say it this way, or would you prefer I say it another way?' Again, you have to tailor your communication to the person whom you're communicating with.

Okay. So can we boil this down? And I know I'm putting you on the spot, but we can do it together. How do we help a person advocate for themselves? What do you think the steps might be?



HOW TO HELP SOMEONE WITH APHASIA ADVOCATE FOR THEMSELVES

Aurora: So, you wanna start by talking with the person with aphasia, and if they really have severe aphasia and they're struggling to speak, grab a paper and pen.

If they're able to write, find out what exactly they want for them. You need to have that conversation about what they want. And even if that takes hours, even if you need breaks, even if you need to come back to it, take the time to really sit down and digest what that individual wants first.

Do they want to have a card in their pocket, you know, an aphasia card that says, 'Hi, I have aphasia, it's X, Y, and Z, please treat me this way and hand it to the person at the coffee shop when they're getting coffee or have it ready.

Maybe you're in a car accident, and you're being evaluated. And they think that something's super wrong. Maybe you're not in critical condition. You just have aphasia. Hand the card over and say, 'Hey, I have aphasia. I need X, Y, and Z'.


OPTIONS FOR ADVOCACY

  1. use an aphasia card
  2. use an aphasia book with interests
  3. verbal communication
  4. gestures
  5. learn how to give an opener for the person with aphasia to communicate
  6. consciously incorporate these strategies into different situations
  7. give more time
  8. keep it simple
  9. give choices
  10. 10. ask one question at a time
  11. 11. pause and wait for a response (remember, silence is golden!)
  12. 12. don’t interrupt

So, you can have an aphasia card. You can have an aphasia book that can look something like, what are this person's interests? What are their favorite foods?

What are their favorite drinks? What do they like to watch? And then regular conversation, that individual can pull the book out and point, 'Hey, I want a hamburger today from this place, or, 'Hey, I want a pasta' or, you know, whatever it may be, they can point to it. Whatever they see fit. You can have cards, and you can have books.

Maybe the individual doesn't want either of those, and they wanna be completely reliant on their verbal communication or their gestural communication. And so you can advocate for them by saying, 'Excuse me, we've been having a conversation for 20 minutes. John would like to say something, I think, or 'John wants to get into this conversation.


ASK QUESTIONS, INCORPORATE THE PERSON WITH APHASIA INTO THE CONVERSATION

Or, you know, if something as simple as, 'what do you think, John?' 'How would you like it?' You know, redirecting. Just taking control of that conversation by incorporating them. You might just not have to say, okay, everybody, stop and listen. You could say, 'Hey, what do you think about that?' and then pause and give them that silence and give them that time to speak however the individual wants it.

And however you had that initial conversation, make sure that you are incorporating that in your everyday life because it's not just when we get together for that kind of a thing. You should be advocating every day in every situation, not only for yourself but for your spouse or your friend, or your partner.

Genevieve: Some content that could go on one of those aphasia cards could be, I need more time. Don't interrupt. Right? I mean, sometimes, our folks with aphasia, that is the worst thing, us as other individuals around them, the worst thing we can do. We think we're helping because it's taken ten seconds for them to come up with a word.

MANY PEOPLE WITH APHASIA NEED MORE TIME, NOT ‘CUEING’ HELP FROM US!

So we think, oh, we need to jump in and cue them. I would say most of our aphasia folks say no, cuz you just derailed them. You just made them lose their train of thought.

Aurora: Mm-hmm. Keep it simple.

Genevieve: So, time. Keep it simple. Sometimes our folks just need two choices. Do you want a hamburger, or do you want a hot dog?

Give them two choices and wait for the answer. Don't say hamburger, hot dog? Did you want mustard and pickles and onions and blah, blah? Don't verbal diarrhea. It does not help our folks keep it simple. Lots of pauses.

So, this is just a jumping-off point today, Aurora, that I wanted to introduce advocacy. You know, it's something I wanna develop further and give everybody a handout. And part of this is going into the communication partner training course that I am building, and you guys are helping me with great content and ideas.



COMMUNICATION IMPEDIMENT DESIGNATION IN TEXAS

One other thing that came up interesting as we are here in Texas is that Texas is offering the backside of the driver's license.

Do you remember what it's called, Aurora, where you can list on the back of your driver's license that you have aphasia? This morning I saw the billboard that says, 'if you have a communication impairment, you can get this X, Y, Z put on the back of your driver's license.

I promise, folks. I'll look it up. I'll put it in the show notes. The first time I came across it and I thought that it was tremendous.

Aurora: Yeah. And they also, like our patient this summer, had a bracelet that was on his apple watch.

ROAD ID FOR YOUR SMARTWATCH

Genevieve: That's right (roadid.com), folks. I'm not wearing my apple watch, but it's a little piece of metal that slides onto the wristband of the apple watch, and they make them for the Google watches and all of them.

And you can put your contact information, communication, medical, it's like a medical alert bracelet, basically that goes on your apple watch, and that's pretty clever too.

Aurora: Mm-hmm. Very important, especially if you were in an accident or, you know, like our patient off biking and something happens.

So I think it's really important. A great way to make sure that you're safe and you're understood in all situations.

Genevieve: Terrific. Well, thank you, Aurora. Thanks for coming on, and good luck with finals.

Aurora: Thank you. And you can find me here at Methodist Hospital this summer. Thank you.

Categories: communication partner training, grad student slp, I see you