Episode 138: When One Plus One Equals Three: A Conversation with National Aphasia Synergy

Episode 138 When One Plus One Equals Three: A Conversation with National Aphasia Synergy               In this episode you will discover: 1.  People with aphasia hold the map. At NAS, people with aphasia don't just have a seat at the table — they built the table. Real peer leadership changes everything about how an organization thinks and acts. 2.  Recovery is about more than speech. The isolation and psychological distress that follow aphasia are just as real as the communication challenges — and just as deserving of attention and support. 3.  Peer-befriending is life participation in action. When people with aphasia support one another through shared experience, that's not a supplement to good care — it is good care. 4.  Sinergia: one plus one equals three. When survivors and professionals work as true equals, something greater emerges than either could create alone. June is National Aphasia Awareness Month, and around here, that means it's time for one of my favorite podcast traditions. For the past few years running, we've spent this month in conversation with people who know aphasia from the inside — those living it every day. Today is no exception, and this one is a conversation I've genuinely been looking forward to.   Welcome to the Aphasia Access Conversations Podcast. I'm Katie Strong from Central Michigan University, where I lead the Strong Story Lab, and I'm a member of the Aphasia Access Podcast Working Group. Aphasia Access is dedicated to transforming services and environments so people with aphasia can participate more fully in life — and today's guests are living proof of exactly what that looks like.         Today I'm speaking with two leaders from National Aphasia Synergy — known as NAS — a peer-led nonprofit founded in 2021 by people with aphasia, for people with aphasia. NAS was built on the belief that those living with aphasia are best positioned to support others on the same journey. Through peer-befriending, technology empowerment, and community building, NAS works to end the isolation that so often follows a stroke — connecting people across the country through a shared sense of what they call Sinergia: the idea that when survivors and professionals work as true equals, one plus one equals three.   Today's conversation feels especially meaningful to me. I've had the privilege of seeing Trish and Amy in action at conferences like Aphasia Access and ASHA — learning from their presentations and watching their advocacy make ripples far beyond those conference walls. As someone who researches friendship and aphasia, I've followed the peer befriending movement closely — it began in the UK, and when I heard that NAS was bringing it to the United States, led by a peer organization, I thought: this is what life participation actually looks like.   Before we get into the conversation, let me tell you a bit more about our guests.   Trish Hambridge is the President and Founder of National Aphasia Synergy. Trish has lived with aphasia since her stroke in 2008, and that experience is the foundation of everything she has built. A former project manager for AppleCare, Trish has become not only a powerful advocate but a published researcher — partnering with research teams to influence the questions being asked and the evidence being built in our field. Her co-authored work spans game-based rehabilitation design, posttraumatic growth in aphasia, and the measurement of motivation and psychological needs in aphasia rehabilitation — all published in leading journals including the American Journal of Speech-Language Pathology. She has spoken at conferences including the Aphasia Access Leadership Summit, Aphasia Access Chautauqua and ASHA, serves on the Disability Advisory Committee in Dunedin, Florida, and is a member of Voices of Hope for Aphasia. Her vision brought NAS to life, and her leadership — in the clinic, in the research literature, and in the community — continues to shape it.   Amy Walters is the Vice President of National Aphasia Synergy. Amy has lived with aphasia since her stroke in 2018 — a stroke that, in a striking twist of fate, occurred while she was attending a neurosurgical conference. A Harvard graduate with a Master of Public Health from Johns Hopkins, Amy spent 30 years as a senior leader in the medical device industry before her stroke, and she has channeled that same expertise and drive into aphasia advocacy. She has presented at neurosurgical conferences to raise awareness, participates in aphasia groups across the country, and brings a remarkable combination of professional knowledge and lived experience to everything NAS does.   So — let's get into the conversation.   Katie Strong: Trish and Amy, welcome. I'm so excited to have you both here today and learn about what's going on in National Aphasia Synergy.   Trish Hambridge: Thank you for the chance to meet.   Amy Walters: We are so pleased to be here with the Aphasia Access Community. Katie Strong: Well, we're delighted that you are sharing your time and expertise with us. I wanted to get started by asking about National Aphasia Synergy. How was it created? Just wondering if you could share the origin story of the organization and how that concept of synergy or working together defines your mission. Trish Hambridge: Long time ago, I had a stroke, major stroke. But I was the same person then as I am now. I remember sitting on the hospital patio in San Jose and Karen, my good friend from college and speech therapist was there, and she was teaching everyone about aphasia. My friends and family were so patient. I remember my Dad talking to me and say, "You are stubborn." and I said, "Thank you!" Because that choice – being subborn - changed everything and gave me the chance to get my identity back. Katie Strong: So, Trish, just to verify, you're saying your stubbornness got you where you are right now. Trish Hambridge: Yes, but yes! Katie Strong: Love it. Trish Hambridge: Sorry to say, I have issues! But going back to the beginning, I had only had five words. Even my 'yes' and 'no' were flipped. Traditional homework is not my cup of tea. Shhh! Quiet, I'm lazy! I needed a better strategy, and I found it with P2Go. It's so much more than an app. It is the tool that gave me my voice back. Katie Strong: I love that, so if I'm understanding correctly, traditional homework is not for you, and that you really needed something that was technology based, which goes back to your expertise in your life, career to be able to really help you communicate, and it was the P2Go. Trish Hambridge: Yeah, yeah, is small, is so, is easy, my opinion. Katie Strong: Well, that's what we're here for today, is your opinion. Trish Hambridge: In 2016, a move to Dunedin, Florida changed everything. I joined Voices of Hope and finally found my community. Then the pandemic hit. But it couldn't stop our connection. We moved to Zoom. I want to be honest, though: some of my friends didn't make it through that storm. Their pain is part of this journey. We build this community in their honor. Katie Strong: Oh, that's really touching, you know. It is. It's hard, so many friends don't stay in our lives for many reasons, but aphasia can really be a challenge for friends sticking around. Trish Hambridge: Yeah, and the technology is not my cup of tea. Katie Strong: Wonderful, wonderful. Thank you for sharing that. Trish Hambridge: In 2021, I stepped up. I moved from a 'Lead Pathfinder' to the Founder of National Aphasia Synergy. I reached out to Debbie Yones, the big cheese of Voices of Hope. She and the Board Director gave me wise advice to help me grow. I didn't do it alone. My sister and my sister-in-law helped me think through the logistics. They helped me build the support for the nonprofit. Because of them, my vision became a reality. Katie Strong: So, your consultation with those important people to your life really helped National Aphasia Synergy become a reality. Trish Hambridge: Yeah. Finally, I asked Amy to join the mission. She became part of the organization. Now, we are moving forward together. Katie Strong: Thanks, Trish. I love that. Amy Walters: Thanks, Trish. Nine years ago, I had my stroke at the neurosurgical conference. Ironic, right? Yeah, the conference was in Colorado Springs. I was in a medically induced coma for 10 days and diagnosed with Global Aphasia. Then I was airlifted to the Shepherd Center in Atlanta, Georgia, where I had a craniotomy and cranioplasty. On the flight I remembered thinking, "Am I in a simulator? What's happening to me?"   Katie Strong: Wow! That sounds surreal! Amy Walters: My career was in clinical affairs for a medical neurosurgical device company, so I am professionally and personally familiar with neuroplasticity. I know how crucial neuroplasticity is to our physical, mental, and emotional recovery. National Aphasia Synergy was born from a deep need for collaborative survivor-led company. Katie Strong: The advocacy you're doing is really amazing, and I'm so excited for our listeners to be able to hear more about it. Amy Walters: Thank you. When we look at the aphasia community today, we see massive gaps. Most organizations are built for us, but they aren't led by us. The 'medical way' focuses only on the speech deficit, but it leaves a gaping hole in mental health, identity, and social connection. The research is heartbreaking: 40% to 60% of stroke survivors with aphasia experience chronic depression, and in early recovery, a staggering 93% experience high levels of psychological distress. This isn't just about the survivor—46% of our family members also face depression. Our mission is to bridge those gaps. We aren't just here to 'fix' speech; we are here to empower the whole person. We call it Sinergia—the Greek word for Synergy. It means we don't work in silos. We don't have 'experts' on one side and 'patients' on the other. We have a partnership where 1 plus 1 equals 3.   Katie Strong: I love it!   Amy Walters: We are moving away from the isolated patient model and toward a Sinergia where survivors and professionals work as equals to reclaim our lives. We are here to educate and empower our peers to use technology to reclaim their voices. But more importantly, we are here to promote peer-befriending. We reach out to those who are new to this path or struggling to find their way, because no one should walk this road alone. Katie Strong: I know, Amy, I just am so excited. I've been watching this peer befriending happen over in the UK, or reading about it, and hearing about it, and I was just so delighted when I heard that National Aphasia Synergy was taking this up and helping us to, to have a really solid connection. I think one of the things that breaks my heart the most is when I meet someone who has aphasia, who's been living with aphasia for a really long time, and they've never met anyone else who had aphasia. Amy Walters: Heartbreaking. Katie Strong: It really is. It really is. Amy Walters: Our goal is to develop a national community that encourages optimism. We believe a positive outlook isn't just a 'nice feeling'—it is a strategy for recovery. Katie Strong: Heck, yes! Amy Walters: At NAS, we don't just look for what's lost; we build on the strengths that remain. There were gaps in the Aphasia Community. Trish Hambridge: Speech Therapists and care partners are vital to recovery. They have good intentions, but the 'medical way' is often the wrong way. Katie Strong: Yeah, yeah, it's not quite the right way. Trish Hambridge: Many researchers only survey the Speech Therapists and the partners. But what about me? What about us? What am I, chopped liver? Think about the last time someone completely iced us out. It hurts, right? It honestly chips away at our sense of self, leaving us clueless as to where we actually fit in. Katie Strong: Yeah, so Trish, just to recap this for the listeners, you're saying when somebody ices you out, you're asking the listeners to reflect on how that really feels, Trish Hambridge: Yeah, I email [a researcher], and have offered [to be a part of their team] but they are like "Oh no, but sorry." Katie Strong: I hear, I hear you. Yeah and I think what you're bringing up - and you and Amy are bringing up such a great point that as the aphasia research community has not always included people with aphasia. Or they're only including people with mild aphasia versus more severe types of aphasia, so I love that you're calling this out and shining light on it. It's, it's time. Trish Hambridge Here's what the research tells us. Therapists and partners see the journey from the outside. But those of us living it? We know the honest truth. Katie Strong: Yeah, yeah, so as the clinicians, the therapists, and the care partners see that journey from the outside, and you all are living it for sure. Trish Hambridge: It is the 'Chicken and the Egg' problem: Does the partner change first? Or does the people with aphasia change? The answer is: The Environment. We must change the environment to find true recovery. We need to move from being 'patients' to being Lead Pathfinders. Katie Strong: Yes, so I love it. You're, you're flipping the script there and reclaiming your identity, or renegotiating it from that patient role to being a lead pathfinder. I love that terminology. Thank you. Thank you. One of you said this earlier that organizations are for people with aphasia, but National Aphasia Synergy is led by people with aphasia. Why is this distinction critical for the community to understand, and how does it change the way an organization is run? Amy Walters: Right, Katie. In the past, organizations were built for us, like a charity. But National Aphasia Synergy is different. We are led by people with aphasia. We are moving from 'being helped' to leading. This is more than an organization. It is a revolution of identity. At National Aphasia Synergy, we are flipping the script on leadership. Our Board makes decisions with one clear priority: putting voices with aphasia at the forefront. That means leaders like Trish, Bruce, and me are the ones making the big calls. We collaborate with wonderful professionals, like Kait, our SLP, Helen, our Financial and Secretarial support and Will Evans, our Volunteer Consultant. They are essential to our success. They ensure our communication is accessible and our business stays strong. I always think of our board meetings being like a United Nations meeting with "international representatives" (i.e., China, France, Japan, etc.) each of us is coming to the table with a different lived experience, different aphasia types, etc. We work together to "translate" and work through our differing communication styles. But make no mistake: The people with aphasia are the primary drivers of the vision. The professionals provide the tools, but we hold the maps.   Katie Strong: Such a great analogy. I love it and it also sounds like your work is fun too.   Amy Walters: Driving you crazy, but you mean you mean you mean, yeah. Hold the phone!   Katie Strong: Oh, that's great. I love it. Well, what does National Aphasia Synergy offer that others should know about? Trish Hambridge: Look at what we have built together: First, our Peer Befriending Program. A team of four SLPs and four people with aphasia worked as equals to create our training. Today, we have 15 volunteer Allies trained and ready to support the community. Katie Strong: I love it. So, 15 people with aphasia, volunteer Allies, have been trained as peer befrienders to go out and connect with other people who newly have aphasia. Trish Hambridge: Right, but anything like… Katie Strong: Or rather, anybody who has aphasia that they're wanting to connect with. Trish Hambridge: Come! Come! But we meet on Zoom.    Katie Strong: On Zoom, right? Yeah, absolutely. This is all virtual, which is amazing, you know, because you get a good reach, a really, a really great reach. What else is going on? Amy Walters: Second, our Aphasia & Mental Health Video. We have four excellent SLPs sharing the research, stats, resources and the power of neuroplasticity. And we also surveyed 10 people with aphasia to capture the honest truth of our emotional journeys and provide 10 essential tips for recovery. Trish Hambridge: I always start with a roadmap. But originally, we were filming something completely different. But three weeks before the shoot, I went to Debbie and asked: 'What do you think?' She said, 'There are enough basic videos out there... why doesn't NAS focus on Mental Health?' Katie Strong: Yeah, okay. So, you were doing all this planning, and then three weeks before the shoot, you went and talked to Debbie and said, "What do you think?" And she said, "There's already enough videos out there on basic aphasia, but not on mental health. I love it! Trish Hambridge: Yeah and so I agree!!! We agreed right away. We made a right turn...  And changed the plan on the fly! I ran a preview for my friends at Voices of Hope. They loved it, but they asked the killer question: 'Where is the actual resource? Where do we go for help?' Katie Strong: Trish, you are speaking to my heart here, and I know I'm one of those "outsider perspectives" as a clinician. But we just don't have great resources for mental health. It's really challenging. So, I love that your friends at Voices of Hope called you out on that. What happened after that? Amy Walters: That was the lightbulb moment, right? Trish Hambridge: Yeah, a video wasn't enough—we needed a map. So, we built the Aphasia and Mental Health Resources paper. The researchers and I had some serious back-and-forth debate, but that's how you get a solid plan. We ended up with something really cool: real tools for real people. Katie Strong: Love, love it! Trish Hambridge: Third, our Adaptive Growth Culture paper. This provides a brand-new map for recovery that the whole world can use to look past the 'broken parts.' Katie Strong: Yeah, Trish, I've heard you speak on this. That talk you gave it, ASHA. I'm going to say listeners, particularly clinicians, you should check this out, because we need to get our clients with aphasia, our lead pathfinders with aphasia to be able to  think in this sort of way, so yeah, Trish Hambridge: But like I have like the speech therapist and the caregiver, and people with aphasia -  it like, look right -- is the good plan. Katie Strong: Love it, fantastic, Amy Walters: Kait and I shared five powerful aphasia stories on video to show our diversity, our strength, our inhumanity, frankly. All of this lives on our National Synergy website. These aren't just projects, they are the proof that when people with aphasia lead, we create world that actually works for us. Katie Strong: Oh, this is fantastic. And we'll have links to your website in the show notes, but you can certainly Google National Aphasia Synergy, and the website pops right up. I've been exploring it for a little bit, but I was looking at it again this morning, and there's just such great, great stuff on there. So please go and check it out. Well, I'm curious, Amy and Trish, what's on the horizon for National Aphasia Synergy, and how can our listeners, whether they're Aphasia Access members or people living with aphasia get involved or support your work. Amy Walters: We are so proud of what we have built, but we are just getting started. This is our Call to Action. Trish Hambridge: We want the world to get excited about Mental Health!  Katie Strong: And I think get excited about your Adaptive Growth Culture too. Trish Hambridge: Yeah! We recently presented a poster at the Chautauqua virtual conference, and the feedback from Aphasia Access members was powerful. The keynote speaker, Dr. Nina Simmons-Mackie, spoke about moving from 'managing a condition' to 'owning a life.' That is exactly what we do! We focus on the strengths, the emotions, and the identity that the old medical model ignores. Katie Strong: Yeah, so okay. So, Trish, you, you were, I think you presented you National Aphasia Synergy presented a poster at the Chautauqua, the Aphasia Access Chautauqua recently. Trish Hambridge: First time presenting a poster! Katie Strong: I love it, I love it. Yep, and the feedback that you got from the Chautauqua attendees was spectacular, right? And that's when, and, and, and Dr. Simmons-Mackie or Nina Simmons Mackey took that idea and we wove it into her keynote at the end, right, and talked about how it's important for us to support people and people with aphasia and care partners move from managing a condition to owning a life. I mean, that that's powerful stuff. I love it! Trish Hambridge: I'm so honored. Katie Strong: Well, you are out there making an impact. Amy Walters: Thank you. We are building something historic, and we want you to be part of it. Here is how you can join the revolution: Trish Hambridge: To the speech therapists and researchers, Help us build our evidence base. We want the test that adapted growth culture map to prove how it improves mental health and builds confidence. Don't just watch from the sidelines—come test this with us! Soon, I'm taking the Adaptive Growth Culture to the global stage. I'll be at the International Aphasia  Rehabilitation Conference in Athens. Katie Strong: You'll be at the International Aphasia Rehabilitation Conference, or IARC, in… Trish Hambridge: Athens!! I am presenting our Adaptive Growth Culture Poster to the top minds in the field. Katie Strong: Fantastic. Trish Hambridge: We have built the roadmap. Now, the researchers will provide the data-driven proof. It is time to see the Adaptive Growth Culture in action. We are moving from lived experience to clinical evidence. Katie Strong: I love it, moving from lived experience to clinical evidence. Amy Walters: That's right, that's right, Trish. If you run a community group, a local program, or a support network, we want to connect with you. Help us build this referral network so that no one is left behind in isolation. We aren't just looking for 'places to go' to pass the time. We are looking for places where we can belong and grow. We are looking for communities that see our potential, not just our deficits. To my peers with Aphasia: Your voice is our power. Share your story or send us a shout-out with your favorite tips and tricks. We also need Buddies for our Peer Befriending program. Help us show the world that we are truly 'owning our lives.' To the Volunteers: We are looking for passionate people to join our Board of Directors. We specifically need one more person with aphasia, as well as SLPs, care partners, and friends. The only requirement? You must believe in the Adaptive Growth Culture. Whether you have the tools or you hold the map, there is a seat at the table for you. Visit us and let's grow together! Katie Strong: Amazing. I hope that our listeners will take you up on the offers that you just laid out there, and that they'll also go out there and share with others that they need to hook everybody up with National Aphasia Synergy. It's a great organization. I enjoyed learning about it more today. And Amy and Trish, I so appreciate you both being here with us and sharing your stories and the amazing work that's going on in National Aphasia Synergy. Trish Hambridge: Thank you. Aphasia Access is fantastic! Katie Strong: I'm glad that you're enjoying Aphasia Access, too. It's a great network, and it's great that we're having lots of communities continue to grow and blossom to support people living successfully with aphasia.   Amy Walters: Hear, Hear! Katie Strong: Thanks. You too. Amy Walters: Thank you. Katie Strong: Have fun in Greece. Trish Hambridge: Yay! Amy Walters: Jealous! Katie Strong: Me too, me too. Amy Walters: Bye, bye. Trish Hambridge: See you. Bye.   On behalf of Aphasia Access, thank you for listening. For references and resources mentioned in today's show, please see our show notes, available on our website at 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 [email protected]. For Aphasia Access Conversations, here at Central Michigan University in the Strong Story Lab, I'm Katie Strong.     Resources   Below is a list of links to the National Aphasia Synergy (NAS) resources and other organizations as discussed:  NAS Website:  https://nationalaphasiasynergy.org NAS email:  [email protected]   NAS Facebook page:  https://www.facebook.com/WeRSynergy (to keep up with what's going on at NAS and for inspirational, adaptive growth mindset content) NAS YouTube Channel: https://www.youtube.com/@nationalaphasiasynergy1410 (to watch our Aphasia Stories series, learn about resources, and tune into our quarterly video newsletter, "The Synergy Turf" to hear real people with aphasia) NAS Adaptive Growth Culture paper: https://drive.google.com/file/d/1VIq0juI4FTPKqF0Cev8qZAI5I5po5ouO/view?usp=share_link NAS "You Have Options!" Paper:  https://drive.google.com/file/d/1PBgvb1mDrjnFASaK_dpGL2gnZND_CjaU/view?usp=share_link NAS Aphasia & Mental Health video: https://www.youtube.com/watch?v=GThkxrKbQTI NAS Aphasia & Mental Health Resource paper:  https://drive.google.com/file/d/1pXbFLtZJ8KZ9Pxpg3HVZHBEd_D7BnsED/view?usp=share_link NAS Aphasia Stories video series: https://youtube.com/playlist?list=PLk1GJP6QGrPDOapMhQlmAUBHfVb5-Mnfi&si=BIuoNmeu-TM-ab65NAS  Peer Befriending: To get involved with NAS Peer Befriending, contact  [email protected] o Flyer:  https://drive.google.com/file/d/1dCETc1pZck59mw6OgaEjZGnXWOcdSlCh/view?usp=sharing o Video:  https://youtu.be/0RNvCeh0BKM   Referenced resources and organizations: Proloquo2Go AAC App mentioned (what Trish uses):  https://www.assistiveware.com/products/proloquo2go Voices of Hope for Aphasia: https://www.vohaphasia.org/