Welcome to the Aphasia Access Aphasia Conversations Podcast. I’m Katie Strong and I’m a member of the Aphasia Access Podcast Working Group. Aphasia Access strives to provide members with information, inspiration, and ideas that support their aphasia care through a variety of educational materials and resources. I'm today's host for an episode that will feature Dr. Debra Meyerson and Steve Zuckerman. We’ll be talking about their bike ride across the country, Stroke Across America, as well as the importance of identity and storytelling in a person’s journey with aphasia.

Before we get into the conversation, let me tell you a bit about our guests.

Debra Meyerson was, until her stroke in 2010, a tenured professor of organizational behavior at Stanford University’s School of Education. Debra’s most significant contribution from that period was Tempered Radicals: How Everyday Leaders Inspire Change at Work (HBS Press, 2001). More recently, she authored Identity Theft: Rediscovering Ourselves After Stroke (Andrews McMeel Publishing, 2019) and is co-founder and co-chair, with her husband Steve Zuckerman, of Stroke Onward, a nonprofit working to ensure stroke survivors and their supporters have the resources needed to rebuild identities and rewarding lives.

Steve Zuckerman is, along with Debra, co-founder and co-chair of Stroke Onward; he has been Debra’s care partner since her stroke in 2010. He has held leadership roles at Self-Help, a nationally recognized economic justice nonprofit, since 2006 and still serves part time as a Senior Advisor. Before that, he was a managing director at a private equity firm.

In the summer of 2022, Debra and Steve led Stroke Across America – a 100-day cross country bike ride, from Oregon to Boston, to raise awareness for stroke, aphasia, and the importance of the emotional journey in recovery.

In this episode you will:

be inspired learning about the bike ride, Stroke Across America, and its effort to raise awareness about the emotional journal of living with stroke and aphasia.
learn about the power of story in reconstructing identity in people living with aphasia.
become aware of Stroke Onward’s mission to support the emotional journey of rebuilding identities and rewarding lives.

Katie: Welcome Debra and Steve. I’m so happy that you are here with me today.

Debra: Thank you so much, Katie.

Steve: It's great to be here.

Katie: Well, I'm just so excited for our listeners to be able to hear about what you've got going on, and I'd love to start with what you were up to last summer. You did an amazing bike ride across the U.S. called Stroke Across America. Congratulations! I mean it was a big deal! Can you tell us about it?

Debra: Sure. Stroke Across America was a bike ride across the US and Canada to raise awareness about stroke, brain injury and aphasia. We wanted to spotlight the emotional journey after stroke. How do we rebuild our identities and live meaningful lives? We rode 4,500 miles over 100 days, traveling from Oregon to Boston. There was a core team of six riders and others who joined us for portions of the ride. We became a family. I didn't expect that.

Katie: That's fantastic. Tell me about who rode with you and became family.

Steve: As Deb said, we had six core riders most of the way across the country. In addition to the two of us, a woman named Whitney Hardy, who's actually a close family friend. She’s a young woman in her thirties who unfortunately suffered a traumatic brain injury about four years after she graduated from college and suffers no ongoing physical disabilities but has some cognitive issues and memory issues. She rode with us from the beginning to the end. Another stroke survivor was Michael Obel-Omia, who I know is an active participant in Aphasia Access. Michael is a stroke survivor who also lives with aphasia. He joined us about 15 days late because his son was graduating from college, so he joined us in Missoula, Montana. We had two wonderful summer interns, Emily and Alex. We met Emily through her grandfather, who was a stroke survivor and hoped to ride with us but didn't end up riding with us. Emily and Alex are both students at Washington University, St. Louis. They traded off, one rode and one worked, every other day. We can't say enough about the wonderful, not just competent and great work they did, but the energy they brought. They really helped make it special. I guess our seventh team member was our then roughly one-and-a-half-year-old golden doodle named Rusty who was along for the ride. Sometimes she rode in a trailer behind our bike and sometimes in one of the support vehicles. We had a group called Bike Eternity, a gentleman named Arlen Hall, who really arranged all the on-road logistics and the route. He and his team were just fabulous in terms of just making everything work. That was our family.

Katie: It's quite a crew. Fantastic. I was wondering if you could tell us about a favorite experience from the ride.

Debra: We hosted sixteen community events across the country. They brought together survivors, families, friends, stroke care professionals, and more. It was really inspiring to be with all these people. Building community and collaborating with others is the only path to real change. And you were at the Ann Arbor event?

Katie: Absolutely. Yeah. My friend Becca and I came down to the Ann Arbor event. I think it was Dexter or something.

Debra: Yeah

Katie: Boy, did we show you how we can have rain in Michigan!

Debra: I know. Oh, yeah.

Katie: Oh, my goodness. Yeah, it was great. Even though we had rain, there was so much great energy around the event. I can feel what you're talking about.

Steve: I think the events were kind of really the most powerful experience. But Deb, you were going to talk about one particular ride you loved.

Debra: I loved riding past Cameron Pass in Colorado for 30 miles up and 40 miles down.

Katie: Wow!

Steve: Yeah, so just to add a little bit to that, because I think that one day of riding really, I mean, every day was fantastic. We just loved the riding. But this one stood out for all of us. It was from a town called Walden in Colorado, a bit east of Fort Collins to a campground called Stove Prairie Landing. The pass we rode over was about 10,276 feet, so we were up there. And as Deb said, we rode up for 30 Miles about 2000 feet, but then got to come down 4000 feet. The whole ride was in a canyon with dramatic mountains and a river that we happened to catch at the right time of the year because the snow was melting. So, it was just a rushing river where we got the sound, the sights, and sometimes the spray of rapids as we're cruising downhill. And then there was just a perfect riverside campground at the end. It was just sort of a magical day.

Katie: Yeah. As you were describing it, I wanted to use the word magical! So, I agree. Yeah. Fantastic. I'm sure it wasn't all easy street. I was wondering if you could tell us one of the hardest things about planning such a big activity. I mean, this was a big event. You had several events along the way, but you know, tell us a little bit about the planning.

Debra: Organizing this event was so hard, but it was so important and so impactful. We had sixteen events: three events before we started riding in Palo Alto, Bend, and Portland, eleven along the way, and two in Boston after we finished. We had so much to do after the rides and after dinner, such as PR, social media, Stroke Onward, events, and a documentary film. There was so much to do! We are really tired.

Steve: Yeah, I think the biking certainly was a lot, but we weren't trying to ride fast. You know, one thing I say about biking is, if you want to ride long distances, you just have to ride long distances. You get used to it. So, that didn't really feel like a strain for us. And the organizing of the route, particularly with the help of Arlen, kind of got done ahead of time. It was a lot of work, but he's a pro and we put it together. But it was really, I guess we're “Type As” who can't get out of our own way. We built so much into the trip that it really was those evenings and our theoretical “rest days,” which were nonriding days. We renamed them “stress days.” We felt like we had to get everything done. So, you know, that was the hardest part of the trip. It was just how much we packed in. We jokingly say, but it may not be a joke, “that someday we want to ride across the country where we have absolutely nothing to do but ride across the country.” That way, we can enjoy the evenings and the rest days, do a little more touristing, and spend time meeting people along the way.

Katie: Yeah, it was very focused. You were very intentional about gaining awareness and supporting community. And I'm sure that it sounds like there was lots to do beyond just pedaling. You mentioned earlier about a campground, but I'm curious, where did you stay along the way?

Steve: Our main support vehicle was an RV, pulling a trailer with a lot of gear. We organized mostly around staying in campgrounds. Partly to keep the cost down and partly because we didn't want to have to stay rooted to where the hotels and motels were. And so, Deb and I got the privilege of sleeping in the RV. It was a small RV, but very comfortable. And the rest of the group was camping, so we had tents and cots, and all you would need for relatively comfortable camping. About one or two nights a week, we would end up staying in a motel, partly just to give the folks who are camping a little bit of a break. We actually came to enjoy the RV so much; we almost preferred it to the hotels. Then, one of the real highlights of the trip was we were able to see a lot of friends going across the country. Particularly in the cities where we held events. We almost, with maybe one exception, always had a rest day connected to the event. Probably at about half of those we ended up staying with friends. That was really special to be able to involve more people in our lives in the journey.

Katie: Yeah, I was thinking when you were in Ann Arbor. Deb, you had a number of colleagues and friends that came to the Dexter event.

Debra: Yes, in Detroit, two days later, we met with my middle school buddies, Debbie and Debbie and Debbie.

Katie: I love that, fantastic! That’s great! Well, riding across the country is a huge endeavor. What made you decide to do it?

Debra: Steve.

Steve: Deb would say, “Steve made me decide to do it.” Well, actually, it is true. I had a close friend from college who rode across the country right after we graduated from college. From that day, I always said, “that's something I want to do”. As I got older and older and hadn't done it, it was kind of rising to the top of the proverbial bucket list. But cycling really has been a huge part of our recovery from Deb’s stroke. It has been the best way that we can continue to do a lot of the things we love - exercise, adventuring, seeing new places, and spending time with friends. We had never ridden a tandem before Deb’s stroke, we rode individual bikes. It was a bit of a challenge for Deb to give up control, understandably. But when we saw the opportunity to do it with a purpose, that's what kind of got us really excited. We were just starting to build Stroke Onward, we wanted to build awareness for the importance of the emotional journey, and events create good opportunities to attract attention. So, what better thing than to do something you've always wanted to do and do it with a purpose? That’s kind of how we got going.

Katie: Well, it is inspirational, and I know a big focus of the trip was to raise awareness about stroke and aphasia. Debra, for people who might not know, could you share a little bit about your life story.

Debra: Of course. My life story started earlier. In 2010, I was a professor at Stanford. I studied, taught, and wrote about feminism, diversity, and identity. Then, I had a severe stroke. For three years, I did therapy almost full time. I had to get my old life back, but I couldn't. My disabilities, especially aphasia, forced me to leave my job at Stanford. Giving up tenure was like a second punch in the gut. It was a huge trauma on top of my stroke trauma that started my identity crisis. Who am I now?

Katie: So, Debra, I think that's what sparked you writing a book called Identity Theft. Can you tell us a little more about that?

Debra: I had written two books before my stroke. I decided to write another book after my stroke, Identity Theft. Writing Identity Theft became my learning journey. It has helped me rebuild my identity. It took me five years, and I learned to accept lots of help. No one told me rebuilding identity is so central to recovery. I learned firsthand that it's so important. While researching Identity Theft, I learned that other survivors think so too. They had no advice and support for this.

Steve: Maybe I'll add. Deb mentioned doing research for Identity Theft. From the very beginning when Deb decided to write a book, she didn't just want to write about her story. She was an academic, she wanted to bring in other people's points of view. And so, Deb interviewed twenty-five other survivors and probably another thirty-five people who were care partners, friends, families, and professional caregivers. Kind of the idea being that she wanted to be able to write about a diversity of people and stroke experiences because that would make the book more relatable and more accessible to more people. And that really kind of gets at one of the things that really struck me about Deb writing Identity Theft. In many ways, the writing of the book really reflected her personal journey. That at the beginning, she was kind of writing it to prove she could, she didn't want to let go of that identity as an academic. But very quickly, she realized that the process of writing it, as Deb said, was kind of her journey. She was able to turn her knowledge of identity and the lens on herself to really help rebuild her identity and her life. But along the way, she realized, “Man, there are so many other people out there who aren't being told about this and need resources.” I say this all the time, choosing to write a book when you have aphasia has got to be one of the bravest decisions because it puts you face to face with your frustrating disability every day. And there were a few times when Deb came downstairs and said, “I'm done,” “I'm not finishing the book,” “This is too frustrating,” and “I can't stand it”. But it was that knowledge that it could help other people that got her to push through that frustration. And that gets to kind of one of the big themes of our work, which is about finding purpose and having purpose and how that's often our biggest motivator in life, what we can give. So, that's kind of a little bit of the history of the book.

Katie: I appreciate you sharing that. And as you were both talking, you were talking about this journey. And you know, thinking about the story and the writing and the rewriting of your identity. It really isn't about the product, not necessarily the book, which maybe initially that’s what you were interested in Deb. But really, the journey is where all the work and the reintegration of who you are and who you're going to be is. very powerful. Very powerful. It's such a great read. I've enjoyed the book very much. So, you have even moved forward beyond a book, and you've started a nonprofit. It's been established for a little bit now. Can you tell us about your nonprofit, Stroke Onward?

Debra: Yes. I created it three, no, four years ago? Our mission is to ensure stroke survivors and their supporters have those tools necessary to rebuild identities and rewarding lives. The vision is a stroke system of care that fully supports every survivor's emotional journey and recovery.

Steve: Maybe I'll add. I think, clearly, the issues of critical care and helping people survive a stroke, and then all the work on rehabilitation is critical. What we saw is that a lot of people don't get all their capabilities back. It's almost like, well, if recovery means rehabilitation, then does that mean everybody who doesn't fully recover their capabilities, has a failed recovery? And we were just unwilling to accept that. Recovery had to mean more than just capabilities. That's why we decided to really focus on that next step in recovery, which is the emotional journey. So, we really think about our work around three areas. One is raising awareness, just that this whole issue of the emotional journey is really important and doesn't get enough attention. Even if people realize it's important and say, “Well, gosh, where can I get help with this?” There aren't enough resources out there. You know, at the end of the day, as Deb said, “it's about system change.” That we would hope that 10 years from now, a person who suffers a stroke and their family enters a system that not only provides good critical care and points them in the direction of good rehab, but also creates a framework and resources for this part of recovery, for the emotional journey. I won't go through all the actual things we do. Hopefully, you'll be able to post the website and people can go and see more about stroke onward, www.strokeonward.org, easy to remember.

Katie: Absolutely.

Debra: And there’s the book discussion guides.

Steve: Yeah, well, one of the places in that the speech therapy community has been so supportive and such a wonderful partner is with the creation of our book discussion guides. Our colleague, Jodi Kravitz, led the creation so that the book can be more accessible. There's a guide, you know, with the idea being a group of people with aphasia can read the book together and have a facilitated discussion with a guide. But also, we created separate guides for families, speech therapists, and other health care workers. Just again, the whole idea of trying to make the material accessible, digestible, and useful for people who are going through what we went through, which was the identity crisis and having to rebuild our lives.

Katie: Absolutely, we use the resources for our local book club here at Central Michigan University and our Lansing Area Aphasia Support Group. The materials were great, but the book just brought forth so much rich discussion.

Debra: Yeah.

Katie: You know, not all of it was easy to read. There is some tough stuff; you don't skirt the issues. I think it really was a very meaningful experience for our members and the students that were a part of the group to be able to hear the journey, to hear what maybe hadn't been addressed, to hear how people had moved forward with things, and the areas where we really do need to be thinking more about as healthcare providers. It is important that we can support the whole person and not just fix the physical or the language. It’s a whole emotional journey that you're moving forward with, which in Stroke Onward is really important. Well, as you know, a lot of my work is about the importance of storytelling. Deb, I was wondering if you could talk about how storytelling impacts your work. Maybe even share a few stories from your work.

Debra: Sure. Storytelling is so important. We are always changing, and our stories evolve over time. Storytelling helps us navigate the emotional journey after a stroke. And in my book, Identity Theft, I share my story and the stories of others so that survivors don’t feel alone. I would like to share one story that helped me recognize that life could be good after my stroke. Seven months after my stroke, my friend Ann invited me to her 50th birthday weekend in Palm Springs with tennis, hiking, talking, and biking. I said, “No...no, no, no.” I would need so much help, and most of all, I could barely talk at all. Conversations would be loud and lively. I would feel frustrated, jealous, and sad. Kim, my friend, said she would help with everything. She said she would help me have fun. She was there for me. I was nervous, but I decided to give it a try. At first, I was determined to be the “old Deb” at the party, but the frustrations were constant. Conversations were too fast, and the friends trying to help did not give me time to find the words. I was frustrated constantly, but I decided to enjoy myself anyway. The night of the birthday party, I danced a lot! Great music, so fun. I was not the “old Deb” anymore, I was a newer version of myself. I could spend my time with my friends dancing, laughing, and enjoying what is essential in my life: friends, community, and fun. It is so hard, but it is so important. Pushing myself to be social and telling stories about it has been so important to my recovery.

Katie: Thanks for sharing, it's a great story. And well, I mean, you sound like you have fabulous friends, but it sounds like Kim really was one that stuck around and was willing to help you through some of that change.

Steve: And if I can add one other story, which kind of gets to how Deb reclaimed some of her old identity. In this case, her identity as a mom, and Deb tells the story in the book. When our daughter Sarah, who at the time of Deb’s stroke was 15 and was not a big dater in high school. But about a year and a half after Deb’s stroke, she got invited to the prom her senior year and she started going out with this guy. And I kind of said to Deb, you know, you never had that mother daughter talk with Sarah. And Deb hadn't been too active in parenting for that year, year and a half because she was you know, fighting for her recovery. I said, “You know, maybe you should be the one, as her mom, to have the talk.” And so, we kind of told Sarah that we wanted to talk to her. We were all standing around the island in the kitchen. Sarah kind of knew something was coming but didn't quite know what. And you know Deb’s speech was nothing like as good as it is now back then. You could just see the concentration on her face trying to figure out what she was going to say. And she kind of slowly said, “Boyfriend? Yes. Pregnant, no!” And that has been dubbed by all of our friends for the world's most efficient and effective mother daughter talk. It was funny; we all just burst out laughing. It was really a great kind of wake up for us that Deb could reclaim a lot of aspects of her identity, but she would just have to live them out differently. And that just because they had to be different didn't mean she couldn't live them out. That was one of our favorites.

Katie: That is a good story. What I love about your sharing of the stories and where your work brings storytelling to life. One of the things that's happening in the literature that's coming into practice, particularly in the UK, and over in Australia, and hopefully maybe over here in the U.S. sometime, is this idea of step psychological care for aphasia. We'll put something in the show notes if listeners want to check this out a little bit more. This idea consists of different tiers to support mental health and particularly depression in people with stroke and aphasia. At that bottom tier, which is supposed to be accessible to every stroke survivor, one of the level one interventions is storytelling. So, it’s that powerful, you know. It's not just fun to tell stories; it's very important to who we are as people and integrating our mental and emotional health into who we are.

Steve: Deb, did you want to mention somebody you interviewed for the book that particularly talked about storytelling?

Debra: Yes. Randy enjoys storytelling, and he is a stroke survivor from St. Louis who I interviewed for the book. Randy and his wife, Rose, started their own aphasia meetup group. Social connections were really important to him.

Steve: And he talked a lot about how he gradually got more and more comfortable telling his story and how much that helped him. He spoke at our community event in St. Louis, and I thought he kind of stole the show when he said, “My stroke changed my life, but it will not hold me back.” I just kind of well up because that's what it's all about. And he said it so eloquently.

Katie: Powerful, powerful. Well, Debra, can you tell us a little more about this idea of identity?

Debra: Sure. Barbara Shadden and you, Katie Strong, I am so thankful. Identity is our narrative about ourselves over time. We have not one static identity, we have multiple identities. We are always changing. Relationships like friends, family, colleagues, and others are a big part of making who we are. Identity is a choice. Instead of asking, “Who am I now?” ask “Who do I want to be now?”.

Katie: Powerful. I like it. Debra, could you talk about aphasia specifically, and how that plays into your views on identity and your recovery?

Debra: Yeah. Communication is so central to everything we do and to my identity. Having communication challenges just makes everything harder.

Steve: And I'll just add that sometimes in recovery, the physical stuff, you know, trying to walk better or get use of a right arm back, would tend to be the focus. But in reality, the aphasia is really the thing that has challenged her identity the most because it was the communication that forced her from a career she worked so hard to achieve. Also, friends and interaction are so central to who Deb is, and that has just gotten so much more challenging. So, not to diminish the impact of physical disabilities, but aphasia is big and really central to the recovery process.

Katie: And I think you know, you mentioned Barbara Shadden earlier, but you know her idea of identity theft. We are the stories that we tell and when we have trouble with the that one thing that we use for story, that tool of language that is impaired, or changed or broken, or, you know, smaller, or however we want to view it with having aphasia, it really makes a significant impact on how you view yourself and how you can connect with other people that are important to you.

Debra: Yeah. I agree completely, and I am so lucky to have friends and family to support me.

Steve: And I think what you said, Katie, is so powerful, and it's why we talk a lot about how few people really know and understand what aphasia is. I think that's because there's this, whatever the opposite of a virtual cycle is, it's the doom loop cycle of aphasia. Aphasia impacts people's identity so that they don't want to speak if they have aphasia because it's not consistent with who they think they are. But because people don't want to speak with aphasia, nobody knows what it is. And so that, you know, makes it that much harder to speak with aphasia. And I think, you know, that gets to this notion of purpose sometimes driving people through what's hard and what's uncomfortable. That was true for Deb and played a role in making a decision that “Yeah, I really wish I could speak the same way I used to.” We've had so many arguments about Deb saying, “I was terrible," because she was evaluating her speaking performance against the way she would have done it before her stroke. Yet, Deb's been willing to push through that, to be out there. You know, that's part of our work of trying to network with other people and encourage people to get out there and tell their stories because that's the only way the world is going to learn.

Katie: And that you're doing, which is so appreciated and inspirational. Steve, I know your work is as much about supporting care partners and other family members as it is about supporting survivors. Can you share a bit about your journey through all of this?

Steve: Oof, it feels like that could be a podcast in and of itself. But you know, I think maybe the nugget that I'll share is it's pretty obvious that people who are close to somebody who has a stroke or aphasia, our lives are going to change. Things we used to do; we can't do. Help we didn't used to have to provide, we do have to provide. I think the real “aha” for me personally, was that I needed to focus on my identity change as well. It wasn't just Deb's identity. And for me personally, and I've talked to a lot of care partners about this, really embracing “care partner” as part of my identity. Not just something I had to do to support Deb, but part of who I now am. This was really important to me because that mind shift actually helped me resent some of the changes in my life less. It was just, like Deb said, our identities change, our lives change, this is just another change. If I can embrace that as a change in who I am, then those just become part of life. Not that they're not frustrating sometimes, but it's a lot better. So I think, you know, Sarah, our daughter, is when you talk about the impact on family. And again, this story is in the book as well. But again, not just the impact on her life, but the impact on her and who she was. About two years after Deb’s stroke, she gave a talk to her whole school community. Sarah talked about the experience of watching her mom have a stroke, and how she wanted to be like her mother and be strong and tough it out. People were offering to help, and she said “No.” She was going to soccer practice, she was doing all of her assignments, and she was visiting Deb in the hospital; she was going to tough it out because she wanted to be strong. Then, she started to see Deb accept more help and she started wondering, well, maybe I can accept some help. She started to let her friends in and let herself be vulnerable. She kind of realized that real strength isn't about toughing it out, real strength is about being vulnerable and using your relationships. Sarah’s an athlete, and she ended the talk with, “Even the world's strongest person needs a spotter.” I well up just telling the story. When she told it, we went through boxes of tissues. But that changed her as a person in ways that actually, you know, maybe she would have gotten there eventually, but not when she was 17. I think that's what we talked to a lot of the families and care partners about. Allow yourself to think about how this experience can change you as a person and try to embrace some of that change where you can.

Katie: Powerful.

Debra: And the families, Danny, Adam, and Sarah. The families are affected.

Katie: Yeah. Aphasia just doesn't happen to the person who has it. Well, Deb, you mentioned that there is one part in your book that sums up a lot of what you were trying to share with other survivors and their families. Maybe we can end with you reading from that paragraph.

Deb: Faced with a trauma like stroke, the opportunities for both challenge and growth are great. We can clarify what we value most in life, set goals that will help us meet them, and achieve repeated small wins in pursuit of them. In this way, we can achieve not just recovery, but satisfying growth and fundamental meanings in our lives.

Katie: I love it. Yeah. Challenge and adversity, thinking forward into the future, and having goals, purpose, and meaning. It’s what life is about. Well, this has just been a fabulous conversation. Thank you both for taking time to share with us a little bit about what you've been up to over the summer and inspire us with some of your stories.

Debra: Thank you.

Steve: Thank you.

Well, that wraps up this episode. Thank you for listening. For references and resources mentioned in today's show, please see our show notes. They’re available on our website, www.aphasiaaccess.org. There you can also become a member of our organization, browse our growing library of materials, and find out about the Aphasia Access Academy. If you have an idea for a future podcast episode, email us at info@aphasiaaccess.org. For Aphasia Access Conversations, I’m Katie Strong. Thanks again for your ongoing support of Aphasia Access.

Information about Stroke Onward

https://strokeonward.org/
Stroke Onward website
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Facebook
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Identity Theft Book Club Materials developed by Jodi Kravitz, Ellen Bernstein-Ellis, Liz Hoover and Stroke Onward https://strokeonward.org/bookguides/

Resources Related to Identity and Aphasia

Meyerson, D., E., (2003). Tempered Radicals: How Everyday Leaders Inspire Change at Work. Boston, MA: Harvard Business School Press.

Meyerson, D. & Zuckerman, D. (2019). Identity theft: Rediscovering Ourselves After Stroke. Andrews McMeel Publishing. www.identitytheftbook.org

Shadden, B. (2005). Aphasia as identity theft: Theory and practice. Aphasiology, 19(3-5), 211-223. https://doi.org/10.1080/02687930444000697

Strong, K., & Shadden, B. (2020). The power of story in identity renegotiation: Clinical approaches to supporting persons living with aphasia. Perspectives of the ASHA Special Interest Groups. https://doi.org/10.1044/2019_PERSP-19-00145

Listen to Episode #5 of Aphasia Access Conversations Podcast featuring a conversation between Katie Strong and Barbara Shadden about the important role story has in supporting identity in people who are impacted by living with aphasia. https://aphasiaaccess.libsyn.com/insights-and-aha-moments-about-aphasia-care-with-professor-emeriti-barbara-shadden

Resources Related to Stepped Psychological Care

Listen to Episode #34 of Aphasia Access Conversations Podcast featuring a conversation between Jerry Hoepner and Ian Kneebone about stepped psychological care and other research related to supporting the emotional journey of living with stroke and aphasia. https://aphasiaaccess.libsyn.com/34-in-conversation-with-ian-keebone

Kneebone, I. I. (2016). A framework to support Cognitive Behavior Therapy for emotional disorder after stroke. Cognitive and Behavioral Practice, 23(1), 99-109. https://doi.org/10.1016/j.cbpra.2015.02.001

Ryan, B., Worrall, L., Sekhon, J., Baker, C., Carragher, M., Bohan, J., Power, E., Rose, M., Simmons-Mackie, N., Togher, L., & Kneebone, I. (2020). Time to step up: A call for the speech pathology profession to utilise stepped psychological care for people with aphasia post stroke. In K. H. Meredith & G. N. Yeates (Eds.), Psychotherapy and aphasia: Interventions for emotional wellbeing and relationships (pp. 1-16). Routledge.

Acknowledgements – A special thank you to Amanda Zalucki and Emma Keilen from the Strong Story Lab at Central Michigan University for their assistance in the transcription of this episode.

Cite as: Bertram, M., Isaksen, J., Toft, L. E., Olsen, A. M., & Breckling, M. (2021). Evaluering af projekt Forløb for borgere med afasi samt afrapportering af implementeringsopfølgningen KomTil – fra udvikling til drift. Unpublished report from University of Southern Denmark.

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