Michael Jinkowski, a stroke survivor, shares his experience with aphasia and his reliance on Augmentative and Alternative Communication (AAC). After his stroke at 49, he lost speech, mobility on his right side, and struggled with depression. Introduced to AAC through speech therapy, he initially found it challenging but now depends on it as a vital tool for daily communication, particularly in social settings or when fatigued. He also uses his AAC device as a memory aid for managing medications and appointments. Michael emphasizes that AAC has been transformative, restoring his voice and confidence, though acceptance was a gradual process. The accompanying discussion underscores that AAC for aphasia is highly individualized, requiring tailored solutions and greater awareness among clinicians and the public to be effectively implemented as a standard support, similar to physical aids.
[Music] You're listening to Start the Chat, an AAC podcast. Where every voice matters and every conversation counts. I'm Chris Gibbons. And I'm Melanie Gilling. Today we're going to start by listening to parts of an interview that we had with Michael Jinkowski. He's a person who experienced a stroke at age 49 and used AAC during his recovery post stroke. He also continues to use AAC when he's fatigued or when he wakes up in the morning as he says and his voice just doesn't work. And so during this interview you're going to hear both Michael's AAC voice and his natural voice. Let's listen to Michael's story. I grew up in Clinton, New Jersey and moved to Pennsylvania about 18 years ago. I was lucky enough to meet my beautiful wife on a online. She has been amazing and I am fortunate to have her. Our family is getting bigger. Together there are three kids. One is married. One is engaged. All we have five grandkids with number six do this month. Can you tell us a little bit to about what you did professionally before you had a stroke? I was a lost prevention detective with a large department store. I also did other jobs as well including as an EMT and liquor manager for a convenience store. You have an active work life, active social life and then you have a stroke. What do you remember about that day? I was home from work with my wife because she had a procedure done on her eye. She was sleeping and I was in living room watching TV. That's when it all goes blank and I don't remember anything for about two weeks. I am very thankful that we were home the day because it was a work day. You mentioned that on the day of that you had your stroke, you just kind of blanked out and that was the last that you remembered for two weeks. When you started coming out of that, can you maybe talk a little bit about that? Was it like to come through that point where you're starting to now kind of come back to yourself and what you experienced with that? Here. A lot of years. I met one of the big things that I remember is I couldn't talk right. I couldn't be great. I couldn't move my right side. My right arm. My right leg. I couldn't do anything with them. It couldn't walk. I always dependent on a wheelchair and somebody helped me do whatever it is I had to do. It was a lot to handle and unfortunately I didn't handle it well. It took me an army. I joke about this but I'm going to share. My wife was like I said, "Can everything be new?" I was very down. I was very depressed. At one point she was in the room and she was vividly and she looked at me. She just stood up and she walked her over and she hit me on the forehead and all of a sudden she was snapped out of it. Everyone needs you. If she was crying and she walked out, that's powerful. I don't like seeing my wife's eyes. I don't like seeing the one that made her cry. I never wanted to feel that again for her. Coming out of the stroke experience, those two weeks, you're getting beyond that, you're learning how to move and walk again and all of that, what was your communication journey like? What were some of the challenges, the successes of coming out of that state? Relearning certain aspects of communication was a challenge. I could not read like I used to. Learning was a huge challenge because I was affected on the right side. Talking was so hard at first. I just couldn't get words out right. My frustration levels were off the charts. So, essentially, the best way I can explain it is, you literally have to learn how to talk, read, write, communicate, all at once at 50 years old. Yeah. You know, people come in and they talk and you have what you want to say in here, but you can't get it out. And then they go, "Well, here, just write it down." Well, I love you, but I'm right here in here. And I can't wait. And you just exist whole. Everything. You just, it's like doing kindergarten all over. I call it a super class because while you're in there, when you're in rehab, you're having nothing to do besides watching TV. So I spent all day. If I wasn't in a therapy, I was working to figure out how to do things. When did you get exposed then to AAC? When did that come in as part of your therapeutic intervention? For me, it took a while. It was a journey, a series of trials and errors, learning to use it as like learning how to talk. Well, and you talk about what effort you've had to put into re-learning so much, communicating differently, using a different tool to communicate. For a lot of people, changes what they say, changes how they say things. Did that. Did you notice that using AAC changed your relationship with your wife or changed the way you communicated with your wife or your kids or friends? My wife and family have been nothing but supported every step of the way. I haven't had questions but support for the most part. It's hard when I have to use AAC without. In time you learn to accept and hope forever I'm talking to what they do as well. So it's hard. Like I said, it's just a learning experience online, on me and for everyone around me. AAC has truly been a miracle for me. Now when I get into a tough situation like at a doctor's appointment, I could even see whatever it is. If I can't talk or I call it locking up, I have this to fall back on. Usually if I'm just like one or two people, I'm good. But when more than that gets involved, I think it's tough being around people. Thanks. Thank you.
what is state embarrassing? I don't think I'm fully used to it yet. - Well, luckily it is possible to teach an old dog new tricks. So, this is what I tell my children all the time, being in my 50s is that, come on, give me a chance. I can learn this. You have this extra layer because of your stroke. How does using AAC change your perception of yourself or have an impact on your identity? - In the beginning, my confidence was low. Over time, I have learned to embrace my new normal. I have learned that this is what I am and what I have to do to move forward. This is all still extremely hard to engage others. I do not know, but I am learning. I do not work. So I try to do a lot of volunteer work. - It's, it's kind. It's not an overnight thing. There's a base, I depend on this, but all of my communication needs. And there's other days, I may not need it. If I'm home and I'm online like this, as I get comfortable, it becomes easier to do. However, it's still difficult to rely on. No matter how good it is, it's still hard to have that dependency. - You're left, I call it my little body. - That's great. - Always, always. - I guess that makes me wonder a little bit too about, like, what would you want to tell people or what would you wish that people would know about AAC as it relates to a stroke, that maybe might help them take that little bit more time just to be willing to sit and listen and to engage, what would you like them to know? - I'd like them to just hear what we're saying. If we're together, you know, luckily if I'm out and my wife is with me, and I'm typing on here, or whatever it is, my wife will say, "Just give 'em a minute." He has to use this to communicate or talk. Most of the time, like they said, they understand that. They don't like it, but they understand it. You live in a very fast world. A lot of people don't want to leave. You just have to add to things. I believe in getting the word out what AAC is, but the obstacles are in what people can expect. So, my goal is to get that word out. This is AAC. I want to know what it is, but I want to put a sign on me who I'm not, says, "If you have a question, ask me." - Yeah. Do you remember who introduced you to augmented communication? And I'm assuming in your rehab, you said it didn't happen early, but it happened eventually. Where did that come from? Who taught you about AAC? Was my speech therapist? I was doing a lot of work and she said, "You know what, you need to look into this." Because I think this kind of support would help me. I had never heard of it. He said, "No idea. I look into AAC's and I got a device to trial and what a change of blessing it has been every day." He don't realize how much you become attached to it. But I'm thankful every day that I have had it. It's expanded what I can do daily. So now some people will say that with their AAC, it allows them to get their words out. And some people will say, "It allows me to get my words out and it helps me remember how I used to talk. Does that make any sense to you or did you ever have that experience using AAC after your stroke?" And I started using AAC. It almost was like getting all of my words out. Or you were talking about who we have in half of you or some of you. AAC comes in is almost like a museum puzzle. It's like talking. When I can't do it, it comes in and you decide, "Hey, just like using a walker or walking, just like, you know, you can't think of anything else." I'm sorry. It really provides a way to talk easily in. It just makes anything possible. I really like how you made that comparison between your AAC being like just like someone who needs help with walking would automatically get a walker. Like they wouldn't think of not doing that. But sometimes people who have experienced a stroke or people who have experienced other diseases that take that voice from them. And then they're hesitant to go after it. And I really like how you were like, "No, it's a tool. It's this thing that just like anything else that I might need to be able to do the things that I want to do, it brought that back to me." And I really like how you said that. How do you feel like you're in, and when are you now using it as this tool in your life and daily life now? Perfect example is like if I go to a doctor's appointment, and they say what medicine do you have? What, you know, what allergy do you have? It's hard for me to remember everything. This says it, speaks it, and confirms it. All of this in one, it's right here. My husband, he knows all my information because I programed it. And I keep it up to the day. You know, if I go to the doctor, the doctor said, "Okay, we did this start taking this medicine." First thing I do when I get home is I'm put living here under my current medicines. And I add it to the list. It's there, it is, like I said, just like needing a walker when I walk. This is my lifeline to something that, I haven't forbid I have in a stroke, which is very, very possible. The chances on me using my ability to communicate are very high because when I'm, that's I can't bring it all together. If you've been done a scene, to that room.
It's almost like a memory aid in some respects, you know, like, which I think is really great. It's not just communicating. It's also this memory keeper for you. It's almost like a personality repository, the way that you've set it up, Michael. It's like it holds some of the key pieces that are you because you've got some of these stored phrases like you were saying that are that you might access at various points. It's learned the way you say your words. You put your medications in in the way that Melanie was just describing. Like, it really becomes a very holistic way to kind of store some key pieces of yourself in a way. Oh, it's out of doubt. You know, my wife jokes and she says to me, amazing how much I have become depending on AAC. And I think, talk, I think, you know, I try to communicate more than anything. But daily, it's just dependent because my communication is broken. It's broken. And this is what needs to fix it. This is what makes it right. And at first, it was hard to depend on that. But now, not hard, it's a relief. I believe AAC can be so beneficial to so many more people. If they just leave it a shot. I wish everybody that had a stroke and needed help to recreating was able to ask a device for a weekly kill. What's your dream for the future? What is Michael Jankowski doing 10 years from now? That's obviously different from where you were three or four years ago when you had a stroke. So, my goal is awareness and advocacy. And getting out, talking to groups, talking to people. And we're raising awareness of everything that's out there as far as AAC and resources and support groups and opportunities. That there are so many things that nobody knows about. All you have to do is look. I wish it was just second nature. Where I don't know how. I don't know what the answer is out. But I wish AAC was a common language for everybody who's dependable. I cannot say it better, completely agree. And I want to say to anyone who's listening that in terms of your advocacy and speaking, Michael, we found you through a site called the AAC Speaker Connection, which is on the UZAC, the United States Society for Augmented, and Alternative Communication website. That's usac.org. We'll make sure there's a link in the notes of this pod. But I would encourage anybody who's interested in either finding a speaker, someone who's using AAC to speak at an event, to provide that level of advocacy that you're talking about. Michael, we need all of our voices in this, to visit that site. And you can connect with Michael and other people who use AAC regularly to be advocates and speakers. Michael, thank you very much. This has been delightful. We really appreciate it. And we look forward to hearing from you for decades to come as we all participate in getting this message out to the world. So thank you very, very much. So before we get into talking a little bit more about Michael's story, maybe for our listeners, we can give a little bit more explanation about what Aphasia is. Yeah, well, Aphasia is actually quite a specific definition, even though it encompasses a wide swath of function. Aphasia specifically references access to language, or the loss of access to language. It's often described medically as a language disorder. So Aphasia really addresses a maybe post brain injury that could be far as strong. But the important part here is that it affects language in all the different domains with which we use language. So that could be spoken. It can be writing. It could be reading. It could be others. I'm not thinking of right now, but you know what I'm saying. Comprehension. Comprehension. Thank you. So it's access to that language component. But we've just listed what? Four, five different domains. And the key is that any number of those might be affected and they might not be affected equally. So then you start realizing, wait a minute, there's a lot of levers being addressed here. That might be disproportionately affecting. That makes it very difficult, then, or challenging, at the least, to look at each person as an individual and say, well, what is their experience of Aphasia and how might AAC work to support this person in their communication? So it is very, very much not a one-size-fits-all scenario. And I know that we say that all the time. Right. When it comes to AAC, it is particularly true with Aphasia. And I think it's one of the reasons why we have been, I think less than successful in putting forth broad resources for people who are aphasic. Well, I think there's a couple reasons why I think we don't always have lots of great resources. I think I know what you're going to say, but I think also there's a lack of awareness that AAC can be used for Aphasia. True. In AAC programs or in SLP programs around the world, we don't necessarily always get a lot of training about AAC in general and AAC with Aphasia specifically. And then there's the other part that I think you were going to allude to, Chris, about how it also, it's very difficult for the developers to also come up with different ideas. That is very, very true. Now, this is, I will say, not without a developer involvement. I think there have been many very strong resources and very strong attempts at link graphica as an example of a developer group that has been just absolutely razor-focused on tools for people who are experiencing Aphasia. And they have some amazing tools and resources. Again, we'll include the link to their website, Toby Dynavox, another one of our colleagues as a developer in the field who've put forth some really strong resources for people who are aphasic as well as PRC Saltillo and others. There are some app developers out there that have really focused in on providing resources. I guess my point is that there's a melding of the two things you brought up, I think, which is that from the clinician side, we don't always know what to do or we haven't been taught that AAC can support these very complex communicative situations that people find themselves in, post stroke or post-ad injury or whatever. So we feel like, oh, this person has aphasia, this is difficult. I'm not going to be able to use AAC. And as developers, we haven't had a broad and long history of clinical intervention that's been documented, that's been successful, that we can lean on as developers. And we are really still in the stages of emerging research to that end. Well, and when we talk about AAC with aphasia, we also have to make a little bit of a contrast between the light tech or paper based or low tech stuff versus high tech. And I think that also plays into it because within the aphasia field, there definitely have been paper based supports or light tech supports that have been very popular for a very long time. I think the challenge has been that a lot of the high tech stuff has been newer just because it's
newer in our world. Well, and I want to bring up another point that I feel very strong about having participated in research in the past when I was working at university, looking at some paper-based supports for people with primary progressive aphasia. And what I think I found very interesting in that research is that we found that setting a piece of paper in front of people, these pages had autobiographical photographs on them and things of that nature. We're very stimulating both for the person who is aphasic, as well as their communication partner because it was very tactile and made total sense. We're going to talk about this experience that we either had together that you had as depicted on this photograph. I think that we can do better at helping involve communication partners to support electronic forms of communication support, that being software on an iPad or software on a speech-generating device, and really, really that partner in so that they see that as a form of communication that they can participate in and support as much as they would a piece of paper in front of the individual. And you really see that in Michael's story. I agree. He says it. He talks about how it was so important that his family was very involved in communicating with him, helping support him when he was trying to communicate, and maybe it was taking him a while and then kind of advocating for him, but then also building that communication together. And then I think it was also very interesting that he not only used his high-tech device as a communication tool, but also as a memory tool, which we know for people with aphasia, is also very much needed, those memory pieces, as well. Absolutely. Absolutely. And I think, so you just got my gear's turning here because also when he was talking about the use of his communication system outside of what we might otherwise see as strictly for communication, that memory tool aspect, that confidence builder. So he would have his, I love the fact that he calls his communication system as buddy. It's like, yep, you're there. And if I need you, I'm going to be able to use you. And so if I go into this conversation, I think he used the example of a physician where he goes in, if he's going to have any trouble talking about anything because his voice just isn't working that day, he's able to use his communication system to make that communication possible. So, yeah, to your point, it sits a little bit more outside of the boundaries of where we typically define, and I think unfairly, what AAC should be. Right. And I think as we move through lots of the episodes that we're building for this podcast, we're going to say over and over again, isn't it interesting that this AAC system is being used in a way that supports this person in their interaction and participation in the world, but not strictly always, so that they're grammatically or spelling, whatever utterance they're getting at in that moment. So, yeah, great points that he made about that and about reducing the barriers to communication in a multi-dimensional way. One thing I also really want to point out about his whole interview is you notice he moved back and forth between his natural voice and his AAC device. And again, we mentioned that that was going to happen, but I think sometimes people have a fear about using some type of high-tech AAC after a stroke for fear that they might not gain stuff back. And I really loved how Michael is like, no, it's there if I need it, if I don't, I don't have to use it. And that it's okay to be a part-time AAC user and use it when you need it. And I really want to highlight that piece because I think there is that really strong fear for many people about maybe I won't gain things back if I try this. Right, which we know is not the case. Not the case, correct. It does point to the complexity of people with aphasia. Overall, we've just had that part of the conversation. We at Smartbox have just recently released a grid set specific around aphasia. And so we thought that it would be really beneficial thinking about what it takes as a developer to construct an AAC tool to support this wide swath of people who are aphasic. With varying needs. With varying needs. Yeah. Yeah, we thought that it would be worthwhile to talk to the people who actually had to go through the work to make this kind of tool. So there are a few folks at Smartbox who just recently done that as I alluded to. I had the great opportunity to talk to both Daisy and Eva who are on our content team. And to talk to them a little bit about that design process and how do they build resources for people with aphasia. So excited to hear a little bit from those from that interview. Well, let's give it a listen. I am here with Daisy Clay and Eva Smiths. And we're going to talk a little bit about aphasia with AAC. But before we do that, if Daisy and Eva, if you guys can maybe tell me a little bit about yourselves, who you are, what you do, and just tell me a little bit. Daisy, want me to start with you? Sure. Yes, so I'm Daisy. And I'm a speech and language therapist. And I'm head of the content team here at Smartbox. So that's the team who create all of our content and our categories. And yeah, pass over to Eva. Yeah. And I'm Eva. I'm also a speech therapist. I work as the AAC content developer at Smartbox. And my clinical background is working with all kinds of client groups, including people with aphasia. So kind of moving into talking about AAC, maybe a little bit from both of you. Tell me a little bit about AAC and its history with people with aphasia. Yes, you mentioned research and that's really where we start the development of every vocabulary system that we've created. Yeah, let's look at the research. What do we know? The evidence suggests that we should do or the evidence tells us we should do. And one of the things that came out from looking at the research with AAC and aphasia is that a lot of people don't know about it. Awareness is really low. So often someone might have a stroke and have aphasia for a number of years and that you know, may never find out about AAC or they hear about it a lot later down the line. So we already know that that is quite a problem that we're facing. And I wouldn't say it's something that is used a lot, but there is a lot of really lovely evidence that it can be really effective at supporting communication and supporting someone's recovery from aphasia as well. Can you tell me a little bit about what's out there right now for people with aphasia in relationship to AAC? And then like maybe tell me also maybe a little bit about why you all decided let's develop another grid set or another vocabulary around aphasia when there might be some other ones that are already available. I would say for my clinical experience, so there are some suppliers that have grid sets specifically for aphasia, but we know that population of people with aphasia is such a broad group and individuals really different, in terms of their strengths and their needs. So I know clinically often we would kind of make quite bespoke vocabulary with sort of different features, depending on what that individual needed. I think at Smartbox it was kind of identified that there was maybe a bit of a gap where yeah, we just increasingly had a lot of people saying I'm working with someone with aphasia, I think AAC would be really great and I really want to explore that with them, but don't really feel like there is a vocabulary that's suitable. So that was howphasia duo kind of started was just people coming to us and saying we really feel like there's a bit of a gap here and something that's sort of sprung to mind off the back of your last question was thinking about how in our research we talked to therapists who were working with people with aphasia and said what are you doing that works? What would you like to be doing? What do you think about the use of electronic AAC? And I remember one team of therapists and in particular where someone said we feel like we should be using electronic AAC and I really want to, but I don't really know where to start and I don't really know what I should be doing. So it kind of goes back to that training and people just not having the confidence to use something. So what we really wanted to do was create something that would be able to be used by lots of different people and have that flexibility built in but also include some of the AAC supports that we already know people are using. So we were talking to therapists saying we use symbol boards and we use yes, no symbols, we use rating scales, we use pen and paper and so we tried to kind of meet those clinicians where they're at and what they're already using to try and pull those things into aphasia duo so that they already had some of that familiarity and they could be using things they're already using and then start to add in some of those other AAC supports. I was going to say I think I'm thinking about
you know, smart boxes existing ASC content. There are features from different vocabularies that would work really well for that population. But thinking about people with a phasier, there are maybe particular needs that they have maybe more than other client groups. Or, you know, there's just things that are a little bit different. For example, word finding difficulties is something that so many individuals with a phasier experience, so with a phasier duo really try to think about how can we support that? And what, you know, what kind of language can we use around that that sort of mirrors what therapists are already doing? And also thinking about a phasier, you know, it's an acquired language impairment. So often people with a phasier will have had typically developing language. And then suddenly, you know, this event or this illness or whatever happens and their language is hugely affected. So kind of thinking about what do they need to be able to communicate about from their life before and from their life now? And you know, they're accessing rehab and things like that. So all of that kind of came into play when we were finding it. Yeah, absolutely. Like, you know, designing any vocabulary we're always trying to start with thinking the question, who are we designing this for? What do they need and what their strengths as well and what can they already do? So how can we build on that? You know, that wasn't that straightforward because people with a phasier are such a diverse group of people with such a diverse range of needs and what could be a real strength for one person could actually be a real challenge for someone else. But you know, that kind of led us to this very, very diverse vocabulary with lots and lots of different features because it is so broad. Any other things that kind of maybe stood out to you from this whole process or unexpected outcomes that from the researcher, from the designer, from that testing process that really stood out for you in addition to leg from the user testing. - We were talking about this, really. - We are losing, I don't know if it's unexpected, but I think throughout the process, we always knew about the importance of communication partners, you know, in AAC, it's well known, isn't it the importance of the communication partner, but throughout the process of developing the foe cap and doing the user testing, speaking with clinicians, it just more and more kind of came to the forefront how much it's just as much about the communication partner support as it is about the person with a phasier. So I think that's kind of where the idea of sort of the phasier duo came from from the importance of it being, you know, it's kind of, it's collaborative, you know, it's not, it's not the onus is on the person with a phasier. - Yeah, and we saw that so much in our user testing that it wasn't something we were handing over to the person with a phasier and saying, here you go, here's something we want you to try. It was very much policing it on the table between the two of us and using it together. So either, you know, we were using it to show the family and show the clinicians, but then, you know, handing that over and then seeing the family use it. And it was just really, like you say, collaborative. - Yeah, that's a great word, the co-construction. - Definitely, really a tool to be used together. And that's where the kind of the strength comes from it. - Any thoughts on any other things that were maybe challenges in developing a vocabulary for people with a phasier? What kind of challenges did you come across? - I would straight away say that the biggest challenge was just the number of different tools that we wanted to include. And the range, the diversity of challenges faced by people with a phasier. And also trying to balance that with simplicity. We wanted to create something that feels really simple and intuitive and easy to use. And doesn't have, you know, all of these, there's complicated navigation. But we had to balance that with putting enough things in it. So that was definitely the biggest challenge from my perspective. Yeah, I don't know about you. - Yeah, I would agree. I think like we've been saying just people with a phasier is such an incredibly broad group of people with such variability in what are their strengths and what are their difficulties. So how do we make vocabulary's work for as many people with a phasier as possible? And so like Daisy said, I think the way we try to do that is by having the two grid set sizes. And then also, you know, there's so much content but trying to kind of organize that logically. So between the two vocabs, we always kept these, you know, three areas the same. So there's always your topics, there's always your supports and always your visual scenes. And you can kind of recognise those areas in both. And then yeah, with the supports, we recognise that it's unlikely that individuals with a phasier all want to use all of those different reports. But they are all available and they can be used as needed or they can be hidden if, you know, if it felt too overwhelming to have all of them there. And then just encouraging the customisation really because again, we can try and make a vocabulary that hopefully will meet the needs of lots of people. But it's going to work best if they have their own personalisation, their own photographs, their own phrases that they want to communicate, you know, input from different communication partners in their lives as well. Yeah, yeah, it's happenantly. I think the whiteboard as well, there's examples from a couple of phasier user testers where they use the whiteboard, you know, in that moment of communication breakdown, they thought, oh, actually, I can use this to write with my fingertip or I can use this to draw. So for example, a user who drew a pair of scissors and then took a photo of that on their phone and sent that to a relative to request, I need some scissors. I want you to bring some scissors. It's really nice that it's been useful to promote those other ways of communication as well, not just face-to-face because we live in quite a digital world. And it's quite important for lots of individuals to keep in touch in those ways too. From what I'm hearing from you, having those right tools kind of allows for that creativity to be able to express itself in whatever way that person's able to do, and I think that's really neat. Yeah, I agree. It's amazing problem-solving, we do. Yeah, Alice. I think also really nice evidence for why we're not being prescriptive and saying, this is how you can use this particular tool. These are just some ideas because we know that people are going to use them in the way that works for them and also will depend on what their strengths are. How familiar they are with using technology, or if they have a phone as well. Yeah, so many things that we can't anticipate. Yeah. Well, I just thank you so much for all of this discussion. I really love it. Is there anything else that you feel like you didn't get a chance to maybe talk about or other points that you feel like are really important that maybe listeners need to hear about aphasia, AAC and aphasia? Anything that you want to end with? I would just say try it. Because like I was just saying, you can't predict how someone is going to react and maybe it will turn out. Electronic AAC isn't the right thing for that person. We can't know until we try. And we had so many reactions when people were trying aphasia of surprise that weren't really well in. Did you see when they did that? And that was so great that we understood that. And that was such a good conversation. And those reactions of surprise, which tells us that they weren't expecting that. So I think just to say we really hope that more people will try electronic AAC and just not have too many expectations of what's going to happen because you don't know. And we've got all of the different tools in aphasia that give that flexibility to try different things that you might not have thought of. Well, thank you both for joining me today. I think I'm just going to end it there. And I'll turn off our-- Yeah, I'll turn off our-- as soon as I can figure out, I'll turn off my turn. [LAUGHS] Yeah, after listening to Daisy and Eva, it is really humbling to me to consider all of the effort that it takes to research and design and build a resource-- attempted a comprehensive resource for people who may use this type of AAC. Absolutely. And despite all of the many things that go into it, I thought it was very interesting that Daisy made that point that it still may not work for everyone. And then that's OK. However, it shouldn't keep us from trying. It shouldn't keep us from maybe saying, let's try light-tech AAC and see if that works. Or let's see if some type of high-tech AAC might work as well. And there's so many different options that someone can try. So if one doesn't work, maybe another one might. Yeah, and I think your point really calls out the point of that this is really coming from two directions here and trying to solve this problem. We have the one hand developers. And on the other side, we have a need to make sure that clinicians are looking at aphasia in a way where that AAC lens is used. Because we know now from a lot of the emerging research and resources that AAC certainly supports people with aphasia. Absolutely. So all right, well on that note, I just want to thank Michael Jankowski, Daisy Clay, [BLANK_AUDIO]
Matt's Melanie, thank you for being here and having this conversation with me. And thank all of you for listening to Start the Chat and AAC podcast. Until the next time, let's keep the conversation going. If you enjoyed this episode of Start the Chat, the AAC podcast, find us on Spotify. And make sure to hit follow to never miss an update. This episode was produced by Alex Ashmore in collaboration with Chris Gibbons, Alicia Alverson, and Melanie Gilling. We want to thank Smartbox, Assistant Technology, for supporting this podcast. If you have any ideas, comments, or feedback, please reach out to us at Start the Chat at ThinkSmartbox.com.
Podcast Summary
Key Points:
Michael Jinkowski experienced a stroke at age 49, which resulted in aphasia, loss of mobility on his right side, and severe depression during recovery.
He uses Augmentative and Alternative Communication (AAC) as a critical tool for communication, especially when fatigued or in situations where his natural speech fails, and also as a memory aid for medical information.
His journey with AAC involved initial frustration and a learning curve, but it ultimately restored his ability to communicate, boosted his confidence, and became an integral part of his "new normal."
The interview highlights that AAC support for aphasia is not one-size-fits-all, requires awareness and training for both clinicians and communication partners, and can be as essential as a mobility aid.
Summary:
Michael Jinkowski, a stroke survivor, shares his experience with aphasia and his reliance on Augmentative and Alternative Communication (AAC). After his stroke at 49, he lost speech, mobility on his right side, and struggled with depression. Introduced to AAC through speech therapy, he initially found it challenging but now depends on it as a vital tool for daily communication, particularly in social settings or when fatigued.
He also uses his AAC device as a memory aid for managing medications and appointments. Michael emphasizes that AAC has been transformative, restoring his voice and confidence, though acceptance was a gradual process. The accompanying discussion underscores that AAC for aphasia is highly individualized, requiring tailored solutions and greater awareness among clinicians and the public to be effectively implemented as a standard support, similar to physical aids.
FAQs
AAC stands for Augmentative and Alternative Communication. It provides a way to communicate when speech is difficult or impossible, such as after a stroke, by using tools like speech-generating devices.
Michael was introduced to AAC by his speech therapist during his rehabilitation. He trialed a device and found it to be a transformative tool for his daily communication.
He struggled with speaking, reading, and writing, and experienced high frustration. Relearning communication felt like starting over, requiring immense effort and adaptation.
Initially, Michael's confidence was low, but over time he embraced AAC as part of his 'new normal.' It became a lifeline that restored his ability to engage with others.
His wife and family provided unwavering support, advocating for him and helping him adapt to using AAC. Their involvement was crucial to his communication journey.
He uses his AAC device as a memory aid, storing information like medications and personal details. It acts as a reliable tool for organization and confidence in daily tasks.
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