Podcast appearances and mentions of charles ellis

Play Episode Listen Later Apr 4, 2023

Knox Brew Stories is a weekly live radio show and podcast that offers an in-depth look at the craft beer scene in Knoxville, and the latest craft beer news from around the country and all over the world.Support us on Patreon! Head to https://www.patreon.com/knoxbrewstories to check out the different ways you can show your support while receiving exclusive content, a shoutout on-air, and backstage passes to members-only events and merch!In this episode you'll find our regular weekly news about craft beer, as well as:Brew News (3:38)Live Music with Josh Anderson (10:38)Interview with Charles Ellis (15:51)Live Music with Josh Anderson (42:32)This Week on Tap (51:25) *Check the blog at https://www.knoxbrewstories.com/blogHost: Zack RoskopCo-Host & Producer: Candace “Ace” Preston Co-Host & Producer: Kevin SummittHead to https://www.instagram.com/beinghave/ & https://yeehawbrewing.com/knoxville/ to learn more!Be sure to tune in live every Monday at 6pm EST at http://ChannelZradio.comAnd check out https://www.knoxbrewstories.com/

head stories interview tap knoxville brew live music comand josh anderson charles ellis brew news

Episode #102: Researching Health Disparities in Minority Stroke Survivors with Aphasia with Davetrina Seles-Gadson

The Rational Reminder Podcast

Play Episode Listen Later Mar 28, 2023 45:22

Welcome to the Aphasia Access Aphasia Conversations Podcast. I'm Ellen Bernstein-Ellis, Program Specialist and Director Emeritus for the Aphasia Treatment Program at Cal State East Bay and a member of the Aphasia Access Podcast Working Group. AA 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 Davetrina Seles Gadson. We'll discuss her work involving how brain lesion characteristics may intersect with aphasia recovery, race, and psychosocial factors, as well as issues involving health-related quality of life assessments. Dr. Davetrina Seles Gadson is the first Black-American to graduate with a Ph.D. in Communication Sciences and Disorders from the University of Georgia. She is a neuroscientist and certified speech-language pathologist with expertise in adult neurological rehabilitation and patient-centered outcomes. She currently is Research Faculty, in the Department of Rehabilitation Medicine, at Georgetown University. Dr. Gadson's research focuses on the influence of health disparities in minority stroke survivors with aphasia and the effect of such disparities on brain functioning, aphasia severity, and health-related quality of life. Most rewardingly Dr. Gadson is the co-host of “Brain Friends”, a podcast for neuro nerds and stroke survivors to talk about aphasia advocacy, language recovery, and community. Listener Take-aways In today's episode you will: Learn how health disparities may influence aphasia outcomes and why more research is needed Discover why "Brain Friends" is another podcast you'll want to add to your playlist. Gain practical tips on how to build confidence in intercultural interactions with your clients Hear how health-related quality of life (HRQL) measures can help inform your clinical practice We'd like to recognize Kasey Trebilcock & Amanda Zalucki, students in the Strong Story Lab at CMU, for their assistance with this transcript. Show notes edited for conciseness Ellen Bernstein-Ellis (EBE) EBE: I am so excited to have a fellow podcaster here today. Thank you for being here. And I just listened to the January Brain Friend's episode. It was great. So I hope our listeners will check it out too. I want to also give a shout out to your consumer stakeholder and co-podcaster, Angie Cauthorn, because she was a featured guest on episode 70, in June of 2021, as we recognized Aphasia Awareness Month, and you just spoke with her about aphasia types and aphasia conferences, and you gave a big shout out to CAC and you gave clinical aphasiology conference and you also gave a big shout out to the Aphasia Access Leadership Summit. So really important conferences, I think that stimulate a lot of discussion and values around patient centered care. And your Brain Friends podcast just has a great backstory. So why don't we just share about how that all started? Where's the backstory to that, Davetrina? DAVETRINA SELES GADSON: Thank you so much for having me. This is such an exciting opportunity. So, Brain Friends started with myself and Angie. We were on the National Aphasia Association's Black Aphasia group call and I just loved her energy. She reached out to me after we finished that group call, and we just started talking. Our conversations were so informative, and it just lit this passion and excitement in me. I said, “Hey, can I record some of these, and maybe we do like a podcast?”, and she was totally down for it. It's just been such an innovative and fun way to disseminate science and engage many stakeholders. EBE: I want to thank Darlene Williamson, who's president of the National Aphasia Association for sending me a little more information. You told me about this group, and so I wanted to find out more. She provided this description by Michael Obel-Omia and his wife Carolyn, and I hope I said his name correctly, who provide leadership to this group. And they said that in this group, the Black American Aphasia Conversation group, “provides a place for Black people with aphasia to share their stories, provide support, meditation, and brainstorm ways to advocate and consider policies. We will discuss the unique challenges and gifts we share due to our experiences with disability and race.” I found out that you can reach out to the National Aphasia Association (NAA) for more information and to get on the email list for a meeting notifications. And in fact, I put the registration link in our show notes today. So, sounds like that group has been a meaningful discussion forum for you, too. SELES GADSON: It's been so fun. I share how for me, I've been in the field practicing for a little over 16 years now, and this was my first time being in a room with so many people that look like me. And for many of the survivors on the call, I was one of their first Black SLPs that they had ever met. Just even having that connection, and being able to speak to some of the challenges, and some of the things culturally that we both share has been my outlet, biweekly. EBE: I'm going to make sure we have that link in our show notes. Also, the link to your podcast because I encourage people to listen to Brain Friends, I've really enjoyed it. When you and I were planning for this episode today, you talked about how being part of the National Aphasia Association's Black American Aphasia Group really helped to energize you and the research you were doing, and what a nice integration of life that was. I will want to tell our listeners about one more wonderful thing, and that's the interview you were part of on the ASHA Voices podcast as well as the related article in the ASHA leader, where I learned more about your journey to doing this research. So, as you provided clinical services for a Black client as an outpatient clinician, and this is pre- doctoral research, you recognized that there was a significant gap in the literature around working with African Americans with aphasia. You saw the need to understand the impact of aphasia on identity and motivation in order to best help this particular client. And those are both really important concepts within the Life-Participation Approach to Aphasia (LPAA) framework as well. So, then you shared that you got some important advice from an important mentor. Do you want to share what happened next? SELES GADSON: Definitely. So, one thing that's also unique about that time is that at that point in my career, I had worked in many of the clinical settings. I had done acute care, inpatient rehabilitation, skilled nursing facility, and even worked as a travel SLP traveling throughout the United States. And so, once I had got to that outpatient setting, it was different from any of the other settings because these individuals were home. And often times, they wanted to get back to work. I remember feeling a little discouraged because I wasn't finding research on a lot of functional treatment approaches or functional therapy. In addition, I wasn't finding research on black stroke survivors with aphasia. And so, I mentioned to one of my mentors at the time, Dr. Paul Rao. I said, “what's going on in the field? And I'm not seeing this, and I have this client, and I don't really know what to do.” And he said to me, “Stop complaining kiddo, and go back and get your PhD.” Admittedly, when he said it, it was kind of like, “okay fine, I'll go do it.” I don't think I realized all what it would take. That's what really made me pursue the degree was this notion that I could help facilitate some of that change and bring some of the research that I needed to see. EBE: That is so important. And that story really made me reflect on another story that has really impacted me from a dear colleague, because you experienced in your doctoral work some concerns about doing research on Black Americans because your interest was seen, as it said in I think the ASHA Voices interview or in the Leader, as “personally motivated.” Your story mirrors one that a colleague and dear friend, Nidhi Mahindra, told me as well. During her doctoral research, she was told that while pursuing multicultural interests were worthy, that she may face barriers to getting funding to pursue that line of work. That might be problematic, right? She had to struggle with that. Despite that daunting message, she persisted, and then was funded by ASHA on a grant studying barriers influencing minority clients' access to speech pathology and audiology. Nidhi reminded me how our life experiences can often inform our work in important and valuable ways. Davetrina, you've channeled your experiences into these explicit observations and data that you shared with your doctoral committee. That was a really important part of moving forward. Do you want to share some of the points gathered for that doctoral committee to help support why this research is so important? SELES GADSON: First, I want to thank Nidhi. Hopefully I'm pronouncing her name right, for her perseverance, because it was some of her work that helped me in my dissertation. Being able to cite her just really shows the importance that everybody plays in breaking barriers and pursuing the things that really speak to them. And one of the things that I'll clarify, it was two parts in pleading this case. The first part was that I changed the committee. I think that that was a supportive thing. And then, the second part was that when I prepared all of the research on why I needed to do this work. Some of the research looked at what we knew already with stroke recovery in minoritized groups, which was that Black African Americans were twice as likely to have a recurrent stroke than any other ethnic group and what we were seeing in the aphasia literature for Black Americans, which was the narrative of Black Americans having longer hospital stays, more hospital costs, but poor functional outcomes. And so, it was these two key pieces that I had really gathered. When I went back to the new committee to share and plead my case on why I really wanted to do this research, they had that initial onset of knowing that this research definitely needs to be done. I think that that's what helped it go through. EBE: Wow. I think those are really important reasons. That whole concept of allowing our life experiences to inform our work and to value that. As we start to talk about your research, and I'm really excited to get to share this amazing work you're doing, I thought it might be helpful to define some of the terms that are integral to this research Some of the definitions are a little tough to wrap your arms around because they're not consistent in the literature or are still waiting to develop. Let's start by discussing what you want the listeners to know about the definition for health-related quality of life, or, as we'll call it, HRQL. SELES GADSON: HRQL is operationally defined that it's multi-dimensional. The way I define it a lot in my work is the perception of the individual's ability to lead a fulfilling life in the presence of a chronic disease or disability such as aphasia, but really their perception in five domains. The five domains that I look at in my work are physical, mental, emotional, social communication, and then role, the individual's ability to get back into the activities that they used to be able to do. EBE: Okay, that's really helpful. I think we should also discuss or define patient-reported outcomes or PROs. Sometimes they are also referred to as PROM's, patient-reported outcome measurements. How do they relate to HRQLs? SELES GADSON: Patient-reported outcomes is a health outcome directly reported by the patient without interpretation. Patient-reported outcomes often look at the status of the health condition. The biggest thing about patient-reported outcomes is that it's without the interpretation of the practitioner. So, whatever the patient says is what we're going to take as gold. EBE: Why is it particularly important then to look at HRQOL for Black stroke survivors? SELES GADSON: That's such a great question. And so I want to break it down in two parts. I think the first part is that given the lack of normative data for Black stroke survivors, when we're only looking at clinician-reported outcomes, that's where we get to this bias and the normative bias. I know that there's research out where there are some outcomes to where we're already seeing this five-point difference. And for some research, that five-point difference is considered clinically meaningful. I think that if we're not using these patient-reported reported outcomes, then we put ourselves in a position to contribute to the disparities that we're seeing in standardized assessments. So that's the first answer. The second reason is that we know that nonclinical factors such as physician-race concordance drive up to 80% of what we're seeing in poor functional outcomes in minoritized groups. If we're not asking the person, then we're not able to really understand the things that they want to do, and we're already coming in with this majority type attitude which could influence one's participation in therapy. The last thing that I think is most important, whether you're Black, white, purple, whatever, is that we have these insurance demands that sometimes may not allow us to get to all the things that we may see from an impairment base. By using the patient-reported outcomes, we are helping structure therapy in ways that matter most to the patient. EBE: Well, that reminds me of this amazing quote that I was hoping I could work in today. I circled it in big yellow pen when I first read through your research. You said that it's really important because, due to the lower HRQL that we find in individuals with aphasia, it's “imperative that the development of a treatment plan incorporates what the patient prioritizes. And it's imperative that clinicians have a way to measure these subjective attributes to make a meaningful impact on care.” That's what we want to do. SELES GADSON: So important, because I think what we have to realize is that part of our role as the practitioners providing this skilled intervention, is really helping the individual get back to what they want to do. And I think that if we're not asking them what they want to do, then we're not really able to structure therapy in matters that mean the most to them, but also help them to start to recognize that as part of this identity with aphasia, that there's this new normal for them. Sometimes, individuals are going to rate themselves based off of what they used to be able to do. But if they know that one of their goals was to be able to talk on the phone, or to play bridge with their friends, and we worked on that in therapy, they're now able to look and see, before I scored my telephone confidence at a 50. Now I feel like I'm at a 90, and so sometimes that own self-recognition can support motivation, and can even support therapy, once insurance dollars run out. EBE: I really appreciated doing this deeper dive into PROs as I read through some of your research. And one of the resources I came across was a really interesting table that talked about six categories of PROs. And I'll put a link in the show notes to a 2015 book by Cella, Hahn, Jensen and colleagues called “Patient-Reported Outcomes and Performance Measurement.” (They list six different kinds of PROs in a helpful table.) But the main category that your work is utilizing is actually these HRQL measures. You've been stating why it's so important. HRQL PROs help to frame diagnostics and treatment because you're trying to prioritize what the patient wants and needs-- what they're expressing. SELES GADSON: Right, exactly. I think that one of the things that it's really important for practitioners to understand, is that these things are mandated by what we see in our scope of practice. When I say mandated, I mean we are called to reduce the cost of care by designing and implementing treatment that focuses on helping the individual. If we're not asking the individual what they want to get back to, then I think that we're putting ourself at a position that makes it more challenging to serve in that way. EBE: One of the things we like to do on this podcast is to provide resources that will help clinicians think differently or do something differently tomorrow as they meet face-to-face with their clients. And one of the things I thought we'd put in our show notes is a link to the PROMIS website, because that was something you've used in your research. Do you want to explain a little bit about that website? SELES GADSON: One of the things that I like about the PROMIS website is that it has a list of health outcomes available to use for a range of individuals-- for pediatrics, for adults. I like that it's free, most of them, and I think that it's a good place to start. Some of the outcomes on that website are also even appropriate for in acute care, meaning that they may not take a long time to administer. And so, I think that that's a good place to start. EBE: Well, thank you. And I want to move right into this wonderful paper where you are co-author with Wesley, van der Stelt, Lacey, DeMarco, Snider, & Turkeltaub, that looked at how brain lesion location interacts with HRQL. Can you share a couple key takeaways from that paper? I hope you'll highlight the one related to depression and HRQL. We're having a lot of research right now around the emotional impact of aphasia and how that will impact recovery outcomes as well. So, tell us a little bit more about that work. SELES GADSON: We looked at the domains of health-related quality of life associated with specific deficits and lesion locations in chronic aphasia. We examined the relationship between HRQL using the Stroke and Aphasia Quality of Life Scale by Hilari and her colleagues, as well as a depression scale, and different impairment-based measures---our battery that we used here. What we found was that language production and depression predicted communication HRQL, meaning that those individuals that reported lower communication HRQL also had a significant depression associated with it. We did lesion symptom mapping in this study. Basically, what we were looking at is to see if HRQL mapped on to discrete areas of the brain. We found that individuals that reported lower psychosocial HRQL had inferior frontal and anterior insula lesions; where individuals who reported lower physical HRQL had lesions in the basal ganglia. This confirmed for us that even though HRQL is this subjective perception, we were seeing it map on to these very specific areas in the brain that also predicted some of the impairment measures that we know of. EBE: That can get us to start thinking about if we have patients with these types of lesions, maybe to be more on the alert for depression. I think that's one point you made. But you also mentioned another important takeaway in the study about the impact of depression on HRQL related to the training of SLPs. This all ties together. What are your thoughts there? SELES GADSON: I think that when we are recognizing that individuals with aphasia are experiencing a new normal, and I think that the research has been very clear on understanding that depression does relate to and contribute to one's communication. I think that there is an opportunity for speech-language pathologists to have more counseling classes. And again, make sure that we're tapping into what the patient wants to do in order to hopefully help mitigate some of those feelings of depression. EBE: I really endorse building those counseling skills in our graduate programs for our students, so they go out feeling more confident and more skilled and knowing that that is going to be an ongoing journey as a speech-language pathologist to build that skill set. SELES GADSON: And shameless plug, I think our episode six of Brain Friends is a mental health episode. I have one of my good girlfriend colleagues there who is a counseling psychologist. She shares with us helping skills for the practitioner, and we share on that episode10 skills that you can do as a clinician to support the person with aphasia. EBE: Thank you for sharing that. That's really important. And again, the link to Brain Friends will be in our show notes. Let's take a moment and talk about how you connect this finding about depression to the role of social communication, because you said it was those scores that were down in your measure. SELES GADSON: With that particular study or overall? EBE: However you'd like to discuss it. I'm opening that door to you. SELES GADSON: One of the things that we were seeing is that individuals were reporting the depression within this Communication HRQL domain. So even though we didn't dive into it too deep in this study, it was more of the correlation and recognizing that individuals that were reporting this higher level of depression, also have this higher level, or this lower report of communication HRQL, making those links specifically. I do have something that I'm working on right now, that will completely answer that question a little bit more solidly. I don't want to speak too much on this, so stay tuned. EBE: Absolutely staying tuned, there's no question. You also had another article that I found intriguing-- An article with your coauthors, Wallace, Young, Vail, and Finn, a 2021 article that examined the relationship between HRQL, perceived social support, and social network size in Black Americans with aphasia. And that paper highlights that there's been little research exploring HRQL in Black Americans. Of the five factors that comprise HRQL, why did you decide to focus on social functioning? And specifically social support and social network in this study? SELES GADSON: Well, that really came from the literature. One of the things that the literature said is that we knew that social HRQL contributed in some way, but we weren't sure what way. And we weren't sure what pieces of social functioning contributed. My apologies to the researcher who said it, but it set me up perfect for my dissertation work to say, “this is why I'm looking at social functioning in these two specific pieces,” because we didn't know. Was it social participation? Was it social network? Was it social support? That was one of the reasons why I wanted to pull out those two specific pieces. The other thing that was really important about this work was that it was the first study that really looked at what HRQL looked like in Black stroke survivors. We didn't know any of that. And so for me, it was really important to compare Black stroke survivors to normal aging Black individuals because I feel that for us to really get baseline understanding of what some of these factors are and how individuals respond in recovery, we have to compare them to their norm, or to other members in their community that look like them before comparing between Black and white or any other ethnic groups. This study is where we found that in terms of HRQL, the main difference between stroke survivors with and without aphasia and in our normal aging individuals, was that communication was the impairment. And then, with the social network and social support, we weren't seeing a difference between this homogenous group of Black people in those areas. EBE: That takes me to my next question, your research noted that the Black survivors with and without aphasia, have smaller social networks compared to white stroke survivors. That's the data that we have based on that social network data. Even though you weren't trying to compare in this study, per se, you still made sense of that finding-- trying to make sure that we don't make assumptions, and instead look at different factors that could be at play. How did you make sense of that finding, the smaller network? SELES GADSON: It was two things that allowed us to make sense of that finding. One was recognizing that in both groups, the stroke survivors with aphasia and our normal aging individuals, that because they were age matched, it could have been a factor of age--meaning that the individuals receiving the support quality and then their network, everyone was kind of in the same age group, and so, it was more of a factor of time of life versus actual culture. But then a lot of that came through in some of the anecdotal reports, and things that we even circled on the scale that we used--we use the Lubben Social Network Scale. With some of those questions, one might be how many people do you feel comfortable sharing personal details with? And often times, we got this report of “just my husband”, or “only God”. And so, we were seeing that some of this really related to the traditional and cultural values in Black Americans, where you're not going to share a lot of stuff with a lot of people. You have your set group, your small network. And that's okay. That doesn't mean that you're isolated. EBE: I think another point you make, and maybe even thinking back to the ASHA Voices Podcast, why it's particularly important to target social communication. That is yet another life participation core concept. Do you want to speak to that for a moment? SELES GADSON: I think the thing that we have to realize with social communication is that individuals, especially within the black community, they are social, they want to talk, they want to get back to doing and interacting with their community. And so, one of the things that that looks like is maybe being able to participate again in Bible study or being able to stand up and read a scripture. And the only way that you know that, is by asking them that on a patient-reported outcome. I think that that's where that social communication piece is coming in. One of the things that I'm seeing with the Black aphasia group is that moment, that hour, where everyone is together, it's amazing. It's them using social communication. You spoke about how I said that that energized my research, and that was why--because I was on this call, and they were speaking about these things, that sometimes I feel like I have to explain to the powers that be why social communication or the LPAA approach is important. But here I was talking with all of these survivors, and they were telling me, I want to be able to communicate, I want to be able to do these things. It just really confirmed for me that this type of research, we were on the right path. EBE: Right. And this is my chance for a “shameless plug” because of my life work, and that is just the power of groups. The power of groups is amazing. SELES GADSON: You know, your life work and... EBE: Well, we don't want to go there, this episode is about you. SELES GADSON: Okay. I'm telling you; I'll get into just how influential your work has been, even when I was working as a practitioner and doing group therapy, it was your work and your research that I was going to. EBE: Well, I had the honor of getting to work with Dr. Roberta Elman, and starting the Aphasia Center of California and doing that initial research, that has been such a gift to me, so, but thank you, back to your work now. That's a great transition, because I'm going to bring us to your 2022 study, looking at how aphasia severity is modulated by race and lesion size in chronic survivors. That was an amazing study. I'm going to read another quote here from that study. And that is, “understanding the origin of disparities in aphasia outcomes is critical to any efforts to promote health equity among stroke survivors with aphasia.” You said this work led you to an “Aha!” moment. And I'd love for you to share more about that moment, and about this study. SELES GADSON: Yes, this was one of my babies, I would say it was definitely a labor of love. And it's been well received. One of the things that led us to this study was that we were already aware of what the research was saying, in regards to the narrative of Black stroke survivors having these lower scores, they were having poor functional outcomes, longer hospital stays. I really wanted to understand what components neurologically, were playing into that. The research has shown that Black Americans often may have a larger stroke due to a myriad of factors-- delayed hospital arrival, not being able to receive TPA. But I wanted to know what factors neurologically were contributing to what we were seeing, not only in this baseline difference that we were seeing, but what was the bigger picture essentially. What we found was that when we looked at race and lesion size, when we did an interaction of race and lesion size, that Black and white survivors with small lesions performed similarly. But larger strokes resulted in more severe aphasia for Black people, than white people. And that was something that we didn't quite understand, because if you think about it, the larger the lesion, the poorer your aphasia should be. But in this case, the larger the lesion, the white stroke survivors were performing better and so we offered two reasons for that. One was the potential assessment bias-- that maybe with the larger stroke, there was this code-switching element that the Black stroke survivors just weren't able to do. And we were seeing that in the larger strokes, and it wasn't being picked up in the smaller strokes. Then the other was the disparity that I had mentioned earlier, which is that access to rehabilitation. It might have been more evident-- we were seeing some of those disparities in the larger strokes. We know that individuals that come from higher earning SES groups have greater access to rehabilitation services like speech and language. That was our other reason, that we were wondering if that's why we were seeing that outcome. EBE: This reminds me some of the research that Dr. Charles Ellis has been doing. I attended his keynote speech at the IARC conference in 2022 that talked about understanding what is happening upstream, because it's going to impact what's happening downstream. In terms of health disparities, it's going to have an impact. I think your research supports that. We need to learn more about it and do the research you're doing. As you reflect on your findings across these amazing studies, this research that you've been doing, can you offer to our listeners some tips on how to have more confidence with intercultural contact? SELES GADSON: That's a great question. I think the first thing that that you have to do is put yourself in places where you are connecting with people that don't look like you. EBE: I agree. And that can be hard and challenging to do. SELES GADSON: It can be, but one of the things that I say is that it goes back to some of the things that Dr. Ellis has talked about, which is being intentional. That might mean going to a different side of the neighborhood to support a Black owned business, and being within that space, to feel how it feels to be around different cultures. The other thing that I think is really important, and it comes out of literature that looks at reducing racial bias in health care, which is to avoid stereotype suppression. So oftentimes, people may be thinking something and they don't want to share it, or they try to suppress it. And the reason why that's negative is because stereotype is a cognitive organization strategy that we use. And where it becomes negative is that if you're having these stereotype ideas, or you're just not sure, if you're not able to express them within a space that you feel comfortable with, then you suppress them. And then it kind of comes out in therapy. And so, I think that those are two huge things. And then the last thing that I would say is that it's really important to build partnerships. And so, building partnerships, either with local churches, within the university area, or just seeing how you can serve in order to help create some of that confidence. But you have to put yourself out there and not wait until therapy day. EBE: Wow, thank you for those tips. And one of them reminded me of something, a tip that a local educator suggested that, even if you don't feel like you're in an environment where your everyday social context might put you with people who look different from you, that you can still listen to other voices by listening to podcasts, sign up for podcasts, sign up for Twitter feeds of people with different voices, so you can start being present to that conversation. So that was something that I have found useful and really good advice as well. SELES GADSON: So true. The other thing that I did, even someone who identifies as a Black American when I was doing my dissertation work, and previously before some other things in my career, I noticed that perspective taking was a huge piece--putting myself or imagining myself in the individual's shoes. And so, for me, that meant that I went to Black museums and exposed myself to different cultural experiences. I wasn't going into some of these spaces, whether it was collecting data or even working with individuals from other earning communities, with some type of privilege. So even in that sense, I wanted to make sure that I checked my privilege as well by doing that perspective taking. EBE: Thank you,. And this discussion could keep going, but I know our time is getting tight here. This whole effort that you put in your research of looking at HRQL measures reminds me of some of the work that I've really admired by Hilari and you had a wonderful story you could share about her, your interaction and your use of her work. Would you like to share that quickly? SELES GADSON: Oh, she's so awesome. I was sharing how when I first was diving into this literature, her work was one of the pieces that I found, the Stroke and Aphasia Quality of Life Scale. I reached out to her and she shared this scale. And a couple of years later, I attended the International Aphasia Rehabilitation Conference in London. And she sat down with me. I asked her if she had any time, if we could just talk, and she was so welcoming. We sat down, and she might not even remember this, but even in that moment of us being able to talk about these things that we were both so passionate about, she just really spoke to me and encouraged me. And it's so funny, because now as I publish and do different things, my mom always says, “you gonna be just like Dr. Hilari.” EBE: Let's just do a shout out for mentorship, for people who take the time, and feel committed and passionate. Again, we're using that word again today, passionate, to support the new voices that are coming into the field. So that's the gift of mentorship. And in this whole discussion, you and I also talked about how important it is to be inclusive, and we talked about how HRQL measures sometimes are harder to use with people with severe aphasia and how they can get excluded from research. It's hard enough to get people with aphasia into the research, right? There's work by Shiggins and her colleagues looking at how often people with aphasia are excluded. But you made a good point about ways that we can include people with more severe aphasia. Do you want to mention that? SELES GADSON: I think one of the things that we have at our fingertips, and we know just from our training, is to use different visual cues to support those individuals that might have more severe aphasia. One of the things that we highlighted in the 2020 paper looking at the psychometric properties of quality of these patient reported outcomes, was that there are certain assessments that are perfect for individuals with severe aphasia, assessments like the Assessment for Living with Aphasia (ALA), because it has the pictures available and it has simple language. Just recognizing that even by using some of these compensation tools, whether it's pictures or modifying the language, we can still get the individual's perspective of what they want in therapy just by using some of these modifications. EBE: This reminds me, I can put one more link and resource into the show notes, because the Center for Research Excellence in Aphasia offers this wonderful speaker series. And there was just an excellent recent session by Dr. Shiggins on including people with aphasia in research. So, I'll put that link in. I want everybody to listen to that presentation. And finally, as our closing question for today, Davetrina, if you had to pick only one thing we need to achieve urgently as a community of providers, of professionals, what would that one thing be? SELES GADSON: I think we have to start using patient-reported outcomes. I think that if you were doing a clinician-reported outcome to assess the impairment, paired with that has to be some level of patient-reported outcome that will give you insight into what the patient wants to do. It's no longer optional. I think that we have to make it a paired thing with our clinician-reported outcome, is getting the perspective of the patient. EBE: I so agree with you, thank you. Thank you for this wonderful interview today. I really, really appreciate it. SELES GADSON: Thank you. EBE: And I want to thank our listeners for listening today. For references and resources mentioned in today's show, please see our show notes. They're available on our website, www.aphasiaaccess.org. And there, you can also become a member of this 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 Ellen Bernstein Ellis and thank you again for your ongoing support of aphasia access. References and Resources Brain Friends Podcast: https://www.aphasia.org/stories/brain-friends-a-podcast-for-people-with-aphasia/ https://www.facebook.com/groups/1563389920801117 https://open.spotify.com/show/5xgkrhUhEIzJgxpRXzNpBH Centers for Disease Control and Prevention (CDC) HRQL website: https://www.cdc.gov/hrqol/concept.htm National Aphasia Association Black American Conversation group registration: The Black American Aphasia Conversation Group meets through Zoom every other Monday at 4:00pm EST (1:00pm PST) . If you are interested in joining this group, please complete the form https://docs.google.com/forms/d/e/1FAIpQLSfJN9VWjrujhebT8Z48bqDZePOHYotipFC34S8T0X8_o8rG-g/viewform Patient Reported Outcome Measurement System (PROMIS) https://www.promishealth.org/57461-2/ Cella, D., Hahn, E. A., Jensen, S. E., Butt, Z., Nowinski, C. J., Rothrock, N., & Lohr, K. N. (2015). Patient-reported outcomes in performance measurement. . Research Triangle Park (NC): RTI Press; 2015 Sep. Publication No.: RTI-BK-0014-1509ISBN-13: 978-1-934831-14-4 https://www.ncbi.nlm.nih.gov/books/NBK424378/ Gadson, D. S., Wallace, G., Young, H. N., Vail, C., & Finn, P. (2022). The relationship between health-related quality of life, perceived social support, and social network size in African Americans with aphasia: a cross-sectional study. Topics in Stroke Rehabilitation, 29(3), 230-239. Gadson, D. S. (2020). Health-related quality of life, social support, and social networks in African-American stroke survivors with and without aphasia. Journal of Stroke and Cerebrovascular Diseases, 29(5), 104728. Gadson, D. S. (2020). Health-related quality of life, social support, and social networks in African-American stroke survivors with and without aphasia. Journal of Stroke and Cerebrovascular Diseases, 29(5), 104728. Gadson, D. S., Wesley, D. B., van der Stelt, C. M., Lacey, E., DeMarco, A. T., Snider, S. F., & Turkeltaub, P. E. (2022). Aphasia severity is modulated by race and lesion size in chronic survivors: A retrospective study. Journal of Communication Disorders, 100, 106270 Gray, J. D. (2022). Transcript: ASHA Voices: Confronting Health Care Disparities. Leader Live. https://leader.pubs.asha.org/do/10.1044/2021-0902-transcript-disparities-panel-2022 Law, B. M. (2021). SLP Pioneers Research on Aphasia Rehab for African Americans. Leader Live https://leader.pubs.asha.org/do/10.1044/leader.FTR4.26092021.58 Lubben, J., Gironda, M., & Lee, A. (2002). Refinements to the Lubben social network scale: The LSNS-R. The Behavioral Measurement Letter, 7(2), 2-11. Shiggins, C., Ryan, B., O'Halloran, R., Power, E., Bernhardt, J., Lindley, R. I., ... & Rose, M. L. (2022). Towards the consistent inclusion of people with aphasia in stroke research irrespective of discipline. Archives of Physical Medicine and Rehabilitation, 103(11), 2256-2263. Shiggins, C. (2023) The road less travelled: Charting a path towards the consistent inclusion of people with aphasia in stroke research. Aphasia CRE Seminar Series #36 (Video) https://www.youtube.com/watch?v=sqVfn4XMHho

united states god university california black health power bible discover law living young phd zoom video leader african americans journal patients survivors pros disorders butt aa archives references georgetown university stroke black americans ses prom rehabilitation disease control aha minority researching charting hahn asha promis vail cac demarco health disparities snider slp cmu physical medicine lindley bernhardt tpa aphasia nidhi communication sciences slps cella director emeritus lohr stelt rehabilitation medicine communication disorders program specialist research excellence rothrock iarc patient reported outcomes cal state east bay performance measurement stroke rehabilitation lifescale hilari seles nowinski refinements charles ellis research faculty leader live hrqol black african americans hrql

Charles D. Ellis: The Loser's Game (EP.244)

Play Episode Listen Later Mar 16, 2023 66:33

When it comes to the world of investing, there are many options available to consumers. The range of financial products available can be overwhelming and confusing. Additionally, investing is not only about the rate of return but also about what you are investing for and why. To help us unpack this complicated subject is Charles Ellis, a highly respected investment consultant and founder of Greenwich Associates, a strategy firm focused on financial institutions. He is also a famous author and has written several books on the topic of finance and investment, such as Winning the Loser's Game which provides readers with insights into making the best financial decisions in an increasingly unpredictable market. In our conversation, we discuss why indexing is the better investment option, how the investment space has changed over time, tailoring your investment decisions to suit your needs and desires, and why looking at the bigger financial picture is essential. We also delve into why investors can be their own worst enemies, what advisors and investors should avoid, the theme of his book Inside Vanguard, various investment strategies, and much more. Tune in and hear insights on indexing, wise investing, and how to win the ultimate game from industry legend Charles Ellis! Key Points From This Episode: • Charles explains what he means by ‘a loser's game' and provides examples. (0:03:51) • How the perception of active management has changed since publishing Winning the Loser's Game. (0:08:00) • He unpacks how the market and market competition has changed since 1975. (0:10:33) • Whether the sentiment towards active management has become too negative. (0:17:24) • Discover why Charles thinks indexing is the best and preferred investment option. (0:19:22) • His opinion on low-cost systematic strategies that seek higher expected returns in the market by owning riskier stocks. (0:24:55) • Why investors and advisors should avoid trying to time or beat the market. (0:27:19) • The value and importance of a well-defined investment policy statement. (0:33:34) • Find out how investors can protect themselves from themselves. (0:34:58) • An underappreciated approach that investors can take to be more successful. (0:36:26) • Hear whether fee differentials between index and active strategies are understood well. (0:37:17) • Charles shares how his mindset has changed over the course of his career. (0:41:47) • Find out if institutions and endowments respect low-cost index investing. (0:42:42) • What he thinks about bringing exotic asset classes to retail investors. (0:44:45) • Reasons why investment management should be considered a full-time profession. (0:46:50) • The biggest opportunities he sees in future for investment management. (0:49:20) • Hear about the difference between price discovery and value discovery. (0:50:09) • Discover why Vanguard has been so successful as a company. (0:53:27) • The theme of his book, Inside Vanguard, and if it relates to other businesses. (0:58:17) • Lessons he has learned regarding personal motivation and productivity. (1:00:28) • Charles tells us his definition of success. (1:03:35) • An outtake from the episode: the role of luck. (1:05:21) Participate in our 23 in 23 Reading Challenge: 23 in 23 Reading Challenge — https://rationalreminder.ca/23in23 23 in 23 Reading Challenge on Beanstalk — https://pwlcapital.beanstack.org/ Participate in our Community Discussion about this Episode: https://community.rationalreminder.ca/t/episode-244-the-losers-game-episode-discussion/22558 Books From Today's Episode: Winning the Loser's Game: Timeless Strategies for Successful Investing — https://amzn.to/3FrNKmt Inside Vanguard — https://amzn.to/3TlwrcG What It Takes: Seven Secrets of Success from the World's Greatest Professional Firms — https://amzn.to/3Thgm7z Capital: The Story of Long-Term Investment Excellence — https://amzn.to/3FpiHb5 Figuring It Out: Sixty Years of Answering Investors' Most Important Questions — https://amzn.to/3LknZZ8 Links From Today's Episode: Rational Reminder on iTunes — https://itunes.apple.com/ca/podcast/the-rational-reminder-podcast/id1426530582. Rational Reminder Website — https://rationalreminder.ca/ Shop Merch — https://shop.rationalreminder.ca/ Join the Community — https://community.rationalreminder.ca/ Follow us on Twitter — https://twitter.com/RationalRemind Follow us on Instagram — @rationalreminder Benjamin on Twitter — https://twitter.com/benjaminwfelix Cameron on Twitter — https://twitter.com/CameronPassmore

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#153-Charles Ellis

South of Scruffy with Ben Fields Podcast

Play Episode Listen Later Mar 10, 2023 108:11

Charles Ellis is the General Manager and operator of Yee Haw Brewing's brew and pub campus in Knoxville. Charles' 2 decades in the beverage industry has culminated in him opening of one of the most experience-forward brew pubs in the southeast.

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Financial Planning 101 with Charles Ellis: Matching Your Needs

Play Episode Listen Later Jan 14, 2023 26:02

Charles Ellis, also known as "Charley," is a highly influential thinker in the investing world. He has been a frequent guest on WEALTHTRACK for 17 years and is considered "Wall Street's Wisest Man" by Money magazine. He has authored 20 books, with the most famous being "Winning the Loser's Game," which is now in its 8th edition. In 2022, he published "Figuring it Out: Sixty Years of Answering Investors' Most Important Questions," a collection of his most thoughtful and thought-provoking articles and essays. In Part One of our interview, Ellis discussed how much the investing world has changed over the years and his recommendation for individuals to take a total financial portfolio approach to financial planning. In part two of his exclusive WEALTHTRACK interview, he discusses how individuals can create the best financial plan for their specific situation. WEALTHTRACK episode 1929 broadcast on January 13, 2023 More info: https://wealthtrack.com/building-a-financial-plan-to-match-your-unique-needs-with-investment-legend-charles-ellis/ Bookshelf: Inside Vanguard: Leadership Secrets From the Company That Continues to Rewrite the Rules of the Investing Business: https://amzn.to/3keDdn7 Winning the Loser's Game: Timeless Strategies for Successful Investing (8th edition): amzn.to/3AbA9Nt Figuring It Out: Sixty Years of Answering Investors' Most Important Questions: amzn.to/3UsNnxC --- Support this podcast: https://anchor.fm/wealthtrack/support

money game winning wall street losers financial planning matching rewrite successful investing most important question charles ellis wealthtrack

The Mayor's Report 045: Charles Ellis (Yee-Haw Brewing)

head mayors brewing knoxville yeehaw charles ellis

Play Episode Listen Later Jan 12, 2023

Knoxville's own Beer Mayor, Greg Headrick, is here to tell you the stories of the brewers and brewery owners behind your favorite beers, along with interviews with all kinds of craft beer enthusiasts. In this episode he sits down with Charles Ellis of Yee-Haw Brewing to learn about his life journey as well as the brand new location of Yee-Haw in Knoxville. Head to https://yeehawbrewing.com/ to learn more!Support us on Patreon! Head to https://www.patreon.com/knoxbrewstories to check out the different ways you can show your support while receiving exclusive content, a shoutout on-air, and backstage passes to members-only events and merch!Email: knoxbeermayor@gmail.com https://knoxbrewstories.com

Charles Ellis: Inside Vanguard

BogleheadsÂ® Live

Play Episode Listen Later Nov 28, 2022 26:45 Transcription Available

Charles Ellis - author of the index fund investing classic, "Winning the Loser's Game" - discusses his new book, "Inside Vanguard: Leadership Secrets From the Company That Continues to Rewrite the Rules of the Investing Business." Ellis answers audience questions, including some life advice for those on the track of early retirement (#FIRE).Show NotesInside Vanguard: Leadership Secrets From the Company That Continues to Rewrite the Rules of the Investing BusinessBogleheads® Live with Robin Wigglesworth: Episode 12Bogleheads® Live with Eric Balchunas: Episode 7John C. Bogle Center for Financial LiteracyBogleheads® ForumBogleheads® WikiBogleheads® RedditBogleheads® FacebookBogleheads® TwitterBogleheads® on Investing podcastBogleheads® YouTube Bogleheads® Local ChaptersBogleheads® Virtual Online ChaptersBogleheads® on Investing PodcastBogleheads® ConferencesBogleheads® BooksThe John C. Bogle Center for Financial Literacy is a 501(c)3 nonprofit organization. At Boglecenter.net, your tax-deductible donations are greatly appreciated.

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The Investment Insights of Charles Ellis, a Financial Legend for 60 Years

Terror at Collinwood: A Dark Shadows Podcast

Play Episode Listen Later Nov 12, 2022 25:43

Part 1 of 2 The ancient Greek philosopher Heraclitus said, “There is nothing permanent except change.” Charles Darwin certainly observed that in his trailblazing work on evolution more than 2000 years later. In a quote widely attributed to him, he is alleged to have commented, “It is not the strongest of the species that survive, nor the most intelligent, but the one most adaptive to change.” As the markets fluctuate around us, how much should investors change? This week's guest has his own historical perspective on that question because he has lived through a momentous evolution in the markets. He is Charles Ellis, whose storied career started on Wall Street in 1963 after graduating from the Harvard Business School. He was a skeptical analyst during the go-go years of the 60s and founded Greenwich Associates, the top Wall Street consulting firm to major investment firms, institutions, and governments. He was an influential board member of Yale's endowment advising its legendary head, David Swensen. He's taught advanced investment courses at both Yale and Harvard. And he has authored 20 investment books, including the classic, Winning the Loser's Game, now in its 8th edition, and the recently published Figuring It Out: Sixty Years of Answering Investors' Most Important Questions, which we will discuss in this week's exclusive TV interview. In the first of a two-part interview, Ellis will discuss the most significant changes that have occurred in the markets and what they mean for investors. WEALTHTRACK #1920 broadcast on November 11, 2022 More info: https://wealthtrack.com/sixty-years-of-investment-wisdom-from-financial-legend-charles-ellis/ Bookshelf: Winning the Loser's Game: Timeless Strategies for Successful Investing https://amzn.to/3AbA9Nt Figuring It Out: Sixty Years of Answering Investors' Most Important Questions https://amzn.to/3UsNnxC --- Support this podcast: https://anchor.fm/wealthtrack/support

tv game winning financial greek harvard wall street investment losers yale harvard business school charles darwin heraclitus investment insights most important question david swensen charles ellis greenwich associates wealthtrack

Terror at Collinwood Episode 38: DS Trivia with Charles Ellis

Play Episode Listen Later Sep 30, 2022 68:01

Trivia facts about Dark Shadows plotlines and the show's cast and crew are discussed with the master of DS trivia, Charles Ellis. Charles was a regular at the Dark Shadows Festivals and his DS devotion and knowledge is well-known to both fans and actors! This fun discussion runs the gamut from DS syndication, fanzines, storylines, characters, DS stars, the lost episode, cancellation, autograph collecting, Lovelady Powell as Dr. Julia Hoffman, and much, much more!

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Market Mayhem – Navigating the Volatility with Charles Ellis 9/19/22

ETF Edge

Play Episode Listen Later Sep 19, 2022 35:43

CNBC's Bob Pisani spoke with Nick Colas, Co-founder of DataTrek Research, and Charley Ellis, author of Winning the Loser's Game – now out with two new books on investing, Figuring It Out and Inside Vanguard. In the midst of the September swoon, they discussed how to wade through the market volatility and recent turbulence – honing in on the most popular ETF trends du jour to help investors make sense of it all. In the Markets ‘102' portion of the podcast, Bob continues the conversation with Nick Colas.

game navigating winning market losers markets mayhem cnbc etf volatility figuring it out charles ellis nick colas

339 - Charles Ellis on Benign Prostatic Enlargement.

Modern Mindset with Adam Cox

Play Episode Listen Later Jun 21, 2022 13:05

Adam Cox is joined by Charles Ellis, Benign Prostatic Enlargement (BPH) sufferer, to discuss the condition and the effects it can have on sufferers. He explains how BPH has impacted his daily life, and also talks about Water Vapour Therapy and how it is used to treat BPH. www.bostonscientific.com

benign enlargement bph adam cox charles ellis prostatic

Indexing: Why Can't Money Managers Beat The Market? Charles Ellis Explains

South of Scruffy with Ben Fields Podcast

Play Episode Listen Later Jun 10, 2022 24:10

In a WEALTHTRACK exclusive legendary financial thought leader, Charles Ellis explains why after decades of searching for outstanding money managers he has become a big believer in indexing. WEALTHTRACK Episode 1850 published on June 9, 2020 More info: https://wealthtrack.com/legendary-investment-consultant-charles-ellis-makes-a-compelling-case-for-indexing/ --- Support this podcast: https://anchor.fm/wealthtrack/support

market indexing money managers charles ellis wealthtrack

#126-Charles Ellis

Play Episode Listen Later May 30, 2022 95:26

While trying to unravel their intertwining past, Charles and Ben unlock some untold stories about the worldwide craft beer renaissance, and why Knoxville is a sleeper craft beer mecca.

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Charles Ellis from the Fort Mose Society joins Mike This Evening.

My 904 News

Play Episode Listen Later May 2, 2022 33:22

Charles Ellis from the Fort Mose Society joins Mike This Evening.

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Knox Brew Stories: 02/21/22 (Jasper Hollow, Charles Ellis, Andy Redley & Shaun Withers)

Play Episode Listen Later Feb 22, 2022

Knox Brew Stories is a weekly live radio show and podcast that offers an in-depth look at the craft beer scene in Knoxville, and the latest craft beer news from around the country and all over the world.Support us on Patreon! Head to https://www.patreon.com/knoxbrewstories to check out the different ways you can show your support while receiving exclusive content, a shoutout on-air, and backstage passes to members-only events and merch!In this episode you'll find our regular weekly news about craft beer, as well as:Brew News (3:19)Live Music with Jasper Hollow (13:06)Interview with Charles Ellis, Andy Redley, and Shaun Withers (19:38)Live Music with Jasper Hollow (50:29)This Week on Tap (57:09) *Check the blog at https://www.knoxbrewstories.com/blogHost: Zack RoskopCo-Host & Producer: Candace “Ace” Preston Co-Host & Producer: Just KevinCo-Host & Video Producer: Cam MolidorHead to https://www.instagram.com/knoxville_charles/, https://www.instagram.com/bchomebrewers/, and https://www.instagram.com/jasperhollowduo/ to learn more!Be sure to tune in live every Monday at 6pm EST at http://ChannelZradio.comAnd check out https://www.knoxbrewstories.com/

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Episode #76: Robin Pollens & Students from Coast to Coast

AWM Insights Financial and Investment News

Play Episode Listen Later Sep 20, 2021 75:16

Jerry Hoepner, a faculty member in the department of Communication Sciences and Disorders at the University of Wisconsin – Eau Claire, interviewed six very bright students about their experiences at the Aphasia Access Leadership Summit. Today, Dr. Hoepner is joined by Robin Pollens, from Western Michigan University to discuss their contributions and chat about student learning. So, get ready to kick back and enjoy these fabulous conversations. As the title implies, we heard from six students from Florida, Michigan, Wisconsin, and California. They all attended the 2021 Aphasia Access Leadership Summit. Today, they will share a bit about their experiences and highlight why it is so important to engage students in Aphasia Access and teach them about the LPAA. I am joined by Robin Pollens, who many of you know as a wise teacher and mentor. She shares her perspectives on teaching and mentoring LPAA and some of the lessons she has learned from students. You're in for a treat! Abby Joski is a first-year graduate student at the University of Wisconsin – Eau Claire who served as a student ambassador at the Leadership Summit. She has served as a student clinician for the Blugold Aphasia Group and Chippewa Valley Aphasia Group. Summer Marske is an undergraduate student, senior, at the University of Wisconsin – Eau Claire who also served as a student ambassador at the Leadership Summit. She helped compose many of the daily summaries at the summit. Raveena Birdie is now a clinical fellow, formerly a graduate student at Cal State East Bay under the mentorship of Ellen Bernstein-Ellis. She and her peers gave a wonderful presentation on aphasia choirs and were awarded the inaugural Aphasia Access Student Presentation Award. Nick Malendowski is a student at Central Michigan University who participated in the Strong Story Lab and collaborated on a project with Dr. Katie Strong and Dr. Jackie Hinkley on stakeholder engaged research. Brandon Nguy is an undergraduate student at the University of Pittsburgh, mentored by Dr. Will Evans. Brandon gave a wonderful presentation on a scoping review of gender representation in aphasia research at the summit. Clarisse El Khouri Faieta is a graduate student at Nova Southeastern University. She collaborated on a project with Dr. Jackie Hinkley and Dr. Katie Strong within the Project Bridge program on stakeholder engaged research. We know that there are many more student voices and we value each and every one of them. For now, listen in on these fantastic students and you can refer to interview transcripts to see their wonderful definitions of the LPAA highlighted in yellow within the transcript. Take aways: Learn from Robin Pollens examples of teaching and mentorship in the LPAA. Be buoyed by the hope inspired by this next generation of LPAA practitioners. Consider why it is so important to offer learning opportunities like the Leadership Summit, other Aphasia Access resources, and teaching/mentorship in LPAA principles. Be inspired by the knowledge, insights, and accomplishments of future LPAA practitioners represented within this podcast, knowing that you have great next generation practitioners learning from each of you, at your universities, aphasia groups, and aphasia programming. You are all teachers whether you are a professor, a group leader, a clinical supervisor, a partner of someone with aphasia, or a person with aphasia. Our students are forever grateful. Interview Transcripts: Robin Pollens' segment Jerry Hoepner: Hi Robin, so good to see you today. Robin Pollens: Good to see you today, Jerry. Jerry: Yeah, happy to have a conversation about student learning with you, as I know, that's something that's really important to you and your previous work has certainly inspired me in terms of mentoring, students and teaching students so, really, a pleasure to have this conversation. Robin: Thank you, I'm glad to be here. Jerry: So, I proposed a couple of big questions to you about our student experiences at the aphasia access leadership summit and thought, maybe that would be a good way to start you know the fall semester talking about student learning and mentoring students in the LPAA. So, I'm going to start you with the first big question which is from your perspective, why is it so important to teach and mentor students in the LPAA approach? Robin: I think a couple reasons. I think this is just the direction our field, thankfully, has moved into, not just for aphasia but, hopefully in general, where we no longer are thinking about what we're doing is just changing. Their speech in the room that they're in with us, but they were really thinking about it more holistically and how it impacts their life and students, I think they appreciate taking that approach once they get the hang of it, and I find that if we give them the tools to help them think about the bigger picture of somebody communication they get it right away, and if we start them out in the beginning of their clinical skill development. Thinking about people's impairment level and their participation level and their barriers in their environments, the wonderful World Health Organization, I see a framework that is thankfully part of our field now. If we model there for them right in the beginning and structure how they're thinking about meeting new clients, they can do it in a way. I feel like we ask a lot of the students because they're brand new and they're having to just think about how you say something to them, and you try to have them do something back and you write down what they're doing, and you keep track of a goal. I mean it's a lot of nitty gritty part of just doing therapy and yet we're asking them at the same time to think of a bigger picture. Jerry: I'm so glad you started with that because I think you're right, it's easy to get kind of hung up on the building blocks of what speech therapy is right with. You've got to understand what the person's impairments are and then you got to understand what the assessment tools are and how to deliver those and then think about the intervention pieces and thinking more broadly, from the start is a good place to begin right as, or I would say begin with the end in mind right, so thinking of that bigger picture, so I bet you have some personal experiences of how kind of that plays out in a in a learning context. Robin: Yeah, I have. I have several semesters that the end of the time had the students write a reflection thinking about the therapy that they just did and I framed it, I went back to the original LPAA statement back in 2000 where they were talking about how the clinician role is expanded beyond that of being a teacher or a therapist but they're also being a communication partner. To help them engage in conversation about their goals and their concerns as one thing, and the second new role is being a culture problem solver. So, if I provide that framework, these are the two different kinds of roles, you may have done, think about what you did this semester, how does it fit in? I find that the students get it that they're able to write down ways that their involvement in conversational interaction led to meaningful ideas, as well as how they ended up being a coach and a problem solver. It's interesting how we have to give them permission, in a way to just have conversation that that's an important thing it's not getting away from therapy that it's actually a part of therapy, so I'll just give you one example, one person was saying that when they were talking throughout the Semester. She was discussing all the barriers that the stroke could place and her ability to physically do her activities to do her work to do her, cooking things like that, and her concerns about coven and how that was impacting her ability to be with your family. And the same person later in terms of the problem solving and the coaching she said that the person was having trouble writing checks, and so it led to a new therapy goal of having a developing a format, where she would be able to write checks so from the conversation of meaningful life exchange comes real participation goals. And again, I believe that if we frame this from the beginning that this is what we're ever intention, I have found that the students are able to realize that that's actually what they're doing. Jerry: But that's just a really elegant eloquent way of connecting the importance of real conversation and investing time in that not thinking it's something different than therapy, but as a part of therapy and as a really crucial part of therapy to get at things that matter to that individual your examples were just spot on with if you approach that in a traditional manner, you might never have known those things even happened to that individual correct. Robin: Now I'd like to add one more thing on this part. Jerry, I think, using the life participation approach to a facial or any therapy makes for more meaningful work life. I think that the students, all of us if we're engaging this kind of work, we see the impact of our efforts, we receive from the clients from the patients from the people with aphasia we receive from them. The kind of relationship centered care interaction and it makes it so that I can then say to the students see how what a wonderful field you're engaging in it's so meaningful and they do by the end often. I'm sure all students do whether you're teaching for LPAA, our students at the end kind of feel sad or some connection when they're finishing up with their clients, I mean we all do, but I think if you have this kind of approach it adds to the possibility that that will happen for the students, and I like to model that awesome. Jerry: Yeah, such an important piece, and I think it does make it, you know, make therapy more rewarding and invaluable to us as well, makes our everyday work more rewarding just doing something that has a lasting effect on that person's life. I remember my very first. From well my clinical externship supervisor always asked me at the end of each day to reflect on what I did that really made a difference in that person's life, and it was a hard thing to do, initially when you're like I spent 15 minutes with this person feeding them, I know. But it's a really important self-check to think about what you're doing, is it really making a meaningful impact and all of those things can, if you set them up the right way and if you go into that intentionally as you're describing. Robin: I like that Jerry, never thought of it in those terms, but I've carried that with me to now. Jerry: But it's certainly been a lesson for me, and we've spoken to my mentor in a previous podcast, Mary Beth Clark, and that's always an impression that she has left on me to be sure. So, additional thoughts that you have about the importance of teaching LPAA or should we talk a little bit about experiential learning and what students gain from that type of a of an approach. Robin: Yeah, I think we can move on to the other topic. LPAA, what we haven't spoken about is the importance in the impact for the clients for people but that's not what this is all about so yeah, I think we could talk a little bit about that other topic about the hands-on experience. And I know there's all different kinds of hands-on experiences, ranging from full immersion, your wonderful aphasia camps that you do, I mean how much more hands on full can you have done that but there's lots of ways in between, also where the person has some awareness and understanding of how they aphasia is impacting them in their daily life. I was just reading back when I knew I was going to be speaking with you today one of the students' reflections and this was a student that. Clearly, had understood LPAA and had worked with a young man who's in his 30s have a stroke and aphasia clearly knew that the students wanted to return to work. And so, the therapy goals were very directed at work related skills very, very clearly. It wasn't until the very last week we had an a day which was like a semester day and all the clients were to go there and all the students and each of the groups had something the newsletter group printed the newsletter in the music group led some singing and it was you know, an interactive day and this student wrote in her reflection that she realized that that the client was off to the side of the room by himself and she went and spoke with them and found out he had anxiety about being with other people. And what she realized is even though she knew about her client's ability to interact based on his communication disorder. And she knew about his absence of physical barriers to participating she had no idea that he had some other emotional barriers that were limiting his ability to participate, so it really wasn't until she had an opportunity to see him in an actual hands on type of an activity that she appreciated the fuller sense of what was challenging to him and had a sense of she had known this there might have been an additional focus of a therapy. But still, for her we're thinking about students, it was a valuable lesson oh. What can happen in us with people in in a natural type of environment. Jerry: Yeah, I think that emphasizes the reason that we do things in in natural environments and environments that that person needs to communicate in because those are one of those moments, you could never predict come up and you have the opportunity to address them. I mean that's a big lesson that we've had at aphasia camp, you know when you're seeing someone from 6:30 in the morning till 10:30 at night there's a lot of things that happen, and you know you. Experiences you wouldn't have right walking to the restroom with someone or you know after they're exhausted after an activity right Those are the kinds of things that you wouldn't experience, unless you had that opportunity to interact with them, and in that authentic context so yeah so important. Were there other thoughts, you were thinking about in terms of hands-on learning. Robin: I was, I was thinking of an example of again because everybody all different university programs don't have the opportunity to do some more extensive types of in person hands on but many people are doing in groups, and so I was thinking back to a poster that several of students did for our state conference when I hear them think about, they lead living with aphasia groups couple different kinds. One focused on the clients might have to know more about aphasia the other one had to do with how it is impacting their life, what happens when they go the store what happens with their family so different kinds of living with aphasia groups. And then afterwards I had them, I asked them a question kind of like Jerry what you asked to your students in this I after the face to access it was a pretty open-ended question, I just asked them how to facilitating a living with aphasia group impact you. And they answered. And I went and looked up somebody your Yo and Yah published an analysis of learning outcomes from service-learning experiences. And came up with three themes and I realized wow I think having them lead the living with aphasia group was like a service learning. With this paradigm, and so some of the things that came up with one of the themes, has to do with cognitive development. And so, he asked the student said they learned how to use alternative modalities and learn how to teach word fangs strategies so Those are the things you'd hope they learn from any speech communication to ask. But they also said, one person said it helped me learn how to effectively navigate difficult emotions. And then, one of the other themes is understanding social issues and the student wrote this increase my sense of advocacy seeing how strong and determine these people are and how hard they work to communicate was incredible. And the third thing that you're going you talked about was personal insight and so they said things like wow some of my problems seem insignificant in comparison to what my clients deal with day to day, so there were all these layers of understanding and insight that the students learned other than the speech therapy tasks skills. And I think that um in terms of growing student clinicians I think that are those are helpful. Jerry: Absolutely and those are the same kinds of outcomes that we're seeing with camps, I think, whenever you have that opportunity to have that authentic and on experience in groups are a great example of where to get that to learn about the lived experience to learn about. Using strategies directly within a real context and so forth. yeah, that's the place to do it and it's interesting how consistent those outcomes are across those types of experiences so really powerful. So, Robin you've been so good as to listen to some segments from students who participated in this past year's Aphasia Access Leadership Summit and you got to hear some of the wonderful things that those students shared in terms of their understanding of the LPAA perspective and the projects that they were involved in that they presented at the summit. So, I know I'm really anxious to listen to those students' stories and to kind of hear some of your thoughts along the way. My big takeaway and listening to these students is that the future is bright, their understanding of the importance of the LPAA framework is really solid. And their definitions could be right there in any textbook. Robin: I think you should gather up those definitions and put them somewhere, I think that was great at how to take this big concept and place it into a sentence. Jerry: Yeah, they sure did a remarkable job, so let's spend a little bit of time listening to them and enjoying the next generation of students. Robin: Okay, thank you, yep. Abby Joski's segment Jerry: Okay well hi, Abby. Thank you for joining us for this conversation really excited to talk with you about the Aphasia Access Leadership Summit and your experiences there. Abby Joski: Yeah absolutely. Thanks for asking me to join. Jerry: Absolutely. So, I thought I'd start with just finding out how you would describe the life participation approach. Abby Joski: Yeah, so this is- I took an aphasia course this past semester, and that was the first I've ever heard about it and I'm a huge fan of it personally, because it does take all the different aspects of the person into consideration when doing an aphasia intervention, instead of looking at just their language and how to fix that. It's also keeping in mind the things they enjoy doing their identity, their family members and it incorporates it all into a really holistic approach to aphasia. Jerry: Terrific so tell me a little bit about how you got involved in the Leadership Summit? Abby Joski: Yeah well, I'm really glad I did. I'm a GA through our CSD department, and so I got an email from I'm pretty sure you Dr. Hoepner that you're asking for students to volunteer to be ambassadors and at first, I was really kind of hesitant to do it because it sounded like such a big deal, it's such as huge Conference, and it was intimidating to a student but getting into it and learning about like the the Board of Directors and all the people putting it together. They were so welcoming and so nice and so they really took us students in and made sure that while we were volunteering to help, we also got a lot of really great experiences out of it. Jerry: Oh, that's great to hear, can you share a little bit about your experience? Abby Joski: Yeah definitely. So, my biggest role was I would attend the sessions and write in a in an friendly way. A newsletter for the day to catch up, maybe people who missed the sessions, or who want to kind of jog their memory about what that particular segment was about. So I really didn't have a lot of interactions with the Community Members with aphasia as much as I did with the people organizing the event but still the communication was really great and while I was watching. These different sessions and presentations just their interactions with the Community and the questions that came up from the people with aphasia, it was a really great community that I got to observe and be a little bit of a part of. Jerry: Terrific. Do you have a favorite moment from the summit? Abby Joski: I was there for the closing part. Oh hang on a sec, I got to remember her name. Can pause for a second here? Who is the woman oh Audrey Holland, yes. So my favorite part of the whole conference is at the very end where Audrey Holland came on to give some final remarks. Really send us out with some words of wisdom some inspirations and she really just opened the floor to questions. She's like, “Well what kind of questions do you have? Let's hear them.” And so, even then she really wanted to make sure that she wasn't lecturing as she wanted the Community to be a huge part of even this ending wrapping everything up making sure there are no final questions. So, I think that really speaks to how interactive and how supportive this whole process organization and community is. Jerry: Terrific, I couldn't agree more. Was there something in specific or something specific that you learned that you'll use in the future? Abby Joski: Yeah, what I know is really reiterated by so many of the sessions is that people with aphasia they are experts at aphasia at their life and we can't ignore that in being SLPs. So, whether it's the intervention process or assessment, they need to be a part of that and so collaborating with them, their family, and really making those goals functional to them needs to be the focus of everything we do. Jerry: Absolutely, those are great lessons to take away for sure. Why should other students get involved in Aphasia Access? Abby Joski: Well, I think, with Aphasia Access as a student there's so many different ways you can be involved in it, so you don't need to be just writing newsletters you can also be the person directing people to where they need to be. You know this year was a little bit different over Zoom, but as students, we do have the tech skills that we can bring to the table. But yeah, with students so much of what we learn is out of textbooks in class and very few of us have those real life opportunities to apply our skills and our knowledge, so I think it's just another opportunity where we can get involved and meet people with aphasia so that can just better give us tools and experiences and knowledge to help them and grow. Jerry: Yeah, that's terrific. Anything else you want to share about your experience? Abby Joski: Just some more students to do it. Jerry: Okay terrific. Well, thank you again Abby for having this conversation and hope to see you at another Aphasia Access in the future. Abby Joski: Yeah, absolutely. That'd be great. Abby Joski: Yeah absolutely. I do really appreciate it, Dr. Hoepner. You bring this like opportunity to students' attention and really bring us in and making us feel welcome. Even looking back at that very first meeting, where it was you, and like the big names of this conference I didn't feel out of place, and so I think that just speaks to how nice and welcoming everyone knows Jerry: That's terrific. Yeah, I'm always thrilled to have these opportunities. When I was just a new clinician and just getting started I had great mentors who connected with me with people like Audrey Holland and Roberta Elman and I just kind of thought it was something that everyone got to do so, I think it's just a great way to kind of level the playing field and see that you know, these people are regular human beings, like all of us, and we can approach them and we can collaborate with them all of those things. So glad I could share the opportunity. Abby Joski: Yeah, and if it's back in person next year I would love to make it. Jerry: Very cool. Raveena Birdee's segment Jerry Hoepner: Hi, Raveena. Good to see you today. Raveena Birdee: Hi, Dr. Hoepner, very good to see you. Thank you for having me. Jerry Hoepner: You are welcome. Nice to see you again after the Aphasia Access Leadership Summit. I'm happy to talk to you today about your experience at the Summit I'm wondering if we can start out by me asking you how you would describe the Life Participation Approach. Raveena Birdee: Excellent question and something that over my years as a graduate student and now as a clinical fellow I've thought a lot about and I think to me life participation approach, excuse me, is about making sure that a person with aphasia or someone with any kind of communication deficit feels like they can be connected to the things that they enjoy doing. You know if someone really enjoys gardening and they had a gardening club. How can we as speech therapists facilitate that for them, how can we be that bridge of supportive communication for them. So, to me, I think participate participation approach is about just making sure that the clients that we work with have access to the things that they enjoy doing. It's a huge change in we're lucky enough to be a support system for them and also teach their communication partners how best to communicate with them, I feel like that's such a huge part of what we do, yeah. Jerry Hoepner: I think that's a great point. That's a terrific description and I know there's a lot of people in Aphasia Access that will be excited to hear these fabulous definitions that students are providing and no longer a student now clinical fellow so I'm excited to talk about your experience at the Aphasia Access Leadership Summit. Can you tell us a little bit about how you got involved? I know you did a presentation and I know that went pretty well but tell us your story. Raveena Birdee: Absolutely it did go very well and I think the Committee and I think everybody who made it possible, it was such a wonderful opportunity for us as a team. I was a graduate student at CSU East Bay and my mentor Ellen Bernstein Ellis, she told us about this opportunity and us being the aphasia tones choir team it's easy to East Bay. And she said, you know there's this really wonderful opportunity with aphasia access and we had heard of Aphasia Access, I think we are all you know, we really had our head in the books. I was, I think, studying for my comprehensive exams at the time. And so we thought, “Sure like we'll try we'll put something together that we're proud of” and that we feel like can be of help and if they want the student perspective we're more than happy to share, and you know meet some people and see what we can try to do and when we got accepted it was like such a party for us wow I didn't think we could do this, so it felt like just one really exciting step after the other yeah. Jerry Hoepner: That's terrific, can you tell us a little tidbit or kind of elevator pitch, excuse me, about your presentation at the summit. Raveena Birdee: Absolutely, and so I previously was something called Co-Director for the Aphasia Tones, which is a choir and aphasia choir for people with aphasia and this started at CSU East Bay about 11 years ago now, so it's acquired with a long-standing history and usually, you know, pre-covid, we would meet in person. We had about 25 to 30 members, and this is a part of a larger aphasia treatment program at CSU East Bay, so the choir is a small part of it but it was one of our most loved programs. It was so exciting to be a part of it was just wonderful to be in the same room together and making music and providing those communications supports and really making our Members feel seen and feel a part of a community and when covid hit, you know, for everyone life really just stopped and the choir team, which consisted of me and then my teammates Lucy and Megan Cleopatra and Christy, we thought how can we keep this going online? How can we figure this out via Zoom? And so, the presentation was all about us figuring out how to do an online aphasia choir and it was very tricky and we ended up observing a virtual connections choir session and that really helped guide us and also shout out to Dr. Tom Sather for giving us some guidelines. And so, we really took some of those guidelines and then we transitioned Aphasia Tones online and the presentation. I don't want to get too technical about it now I suppose, but it was very much about what are the technical tips and tricks to run and aphasia choir what are our core purposes, what are the principles that guide us? Is it learning something new, is it communities that engagement and it ended up being about all of it it's all important and the connection, I think the most important thing that connection between us and our Members with each other. The last thing I'll say about it is that and it was such a wonderful experience to do Aphasia Tones online, because I feel like our members and people with aphasia are already potentially socially isolated because of aphasia and because of those barriers to communication, and so it was an honor for us to be able to bring together our little community in a time of extreme social isolation during the covid pandemic and I think that was one of the best experiences of my whole graduate career just to have that and then present at Aphasia Access. It was wonderful. Jerry Hoepner: That's terrific. It's clear that you were really intentional and thoughtful about the process and that you had great mentorship like you said and that resulted in you receiving you and your team receiving the first Aphasia Access Student Award which was really exciting to be a part of so kudos to you and your team. I did get to see you in action a little bit as I joined one of your group meetings, one of your patient group meetings, and that was fabulous so it's clear you have a lot of investment in this. Raveena Birdee: Thank you, and I mean truly thank you to Aphasia Access. Thank you to you for that wonderful award we had no idea during the Leadership Summit, we had no idea what was happening in regards to the award and we were all just so grateful and so thankful, and I do want to be or not want to be necessarily, but I do want to say thank you for coming to Aphasia Tones rehearsal and I would like to give Dr. Hoepner a huge shout out because during the service this is still in the beginning stages of when we were still really perfecting the process and we were doing something called a call and response, and my group members, we had broken out into a small breakout room and I, I asked my group members if any of them wanted to sing a particular stanza and I think they were all feeling shy, and it was a new format, and so I called on Dr. Hoepner to sing a little bit of a song in front of you know 10 or so people and he did it so well, and I'll never forget that moment. It was so special. So, thank you, Dr. Hoepner. Jerry Hoepner: Absolutely, you're welcome. Always willing to help out, but the listeners couldn't hear that I was laughing because I muted my MIC for just a moment but yeah that was that was a good moment for sure. Do you have a favorite moment from the Aphasia Access Leadership Summit you want to share? It might have already been talked about but go ahead. Raveena Birdee: That is a good question because the good thing about the Summit is that it was a week long and I was just beginning my Clinical Fellowship. I'm currently a clinical fellow in the Oakland School District here in California and so I was working full time and then kind of popping into the Summit as I could but what was really nice about is that everything's recorded, and so I found myself when I had some more time to go back and listen to the prerecorded session or go back and look at the posters because I found that while I was really enjoying kind of popping into different breakout rooms and seeing and hearing people talk about their field and the amazing minds that were at this conference, you know as a student you hear these names and then being able to see them talk about their craft is so wonderful but I think my favorite part was hearing oh goodness it was Dr. Ellis and he was talking he was speaking about disparities in health care and, as a young person of color in this SLP field, that was something that was really, really interesting to me and it's a talk that I've kind of gone back to a couple of times on the recording on YouTube just to try to wrap my head around it. That was a really, really cool really cool talk. Jerry Hoepner: I've gotta agree and I, like you, I've gone back to that a couple of times, in addition to the live stream, because just such an important and powerful presentation so yeah completely agree. So, in addition to that, what's something from the summit that you learn that you'll use in your future? Raveena Birdee: Oh, goodness let haven't died um it's such a good experience, I mean I think it's I'm in a kind of an interesting place right now, because I really thought I would be working with adults in that population and working with people with aphasia for my clinical fellow fellowship, excuse me, but you know I ended up going in a different direction, and so now and working with elementary school children it's really interesting to me to see how the- trying to think of how to phrase this - but the principles that we use for different kinds of therapy apply everywhere. Yeah a lot of times I end up speaking a lot to parents about how to support their child's communication and it's not just direct therapy with my client but it's therapy and consultation and materials and assessing the environment and figuring out how to best connect my client with the things that are enjoyable to them, and I feel like that's life participation in a nutshell, of how do we, how do we make this functional, how do we make this work so that they're able- my client can feel comfortable and do the things that they want to do. Jerry Hoepner: Raveena I'm so glad you said that and just a great opportunity, as we think about you know, the role of Aphasia Access in the life participation approach for other students and for other professionals, for that matter, it is a very universal principle and you can draw upon its kind of regardless of what setting you're in. Those are the priorities of helping another human being, through difficult time so really well said, and a great connection. So, with that in mind, that's a perfect segue to my final question for you, which is why should other students get to get involved in Aphasia Access? Raveena Birdee: Oh, I have lots of reasons why there are so many resources at Aphasia Access and even if you think that you'll be only working with children are only working with a specific population. Our field is so huge that there are so many different ways to interact with our clients like you were just saying and the other thing I think is so important is that, as a student we hear all of these names, we hear about these publications, we hear about people at other universities you know, doing research which is so important in our field and making these publications and giving these talks, and you know, giving really great evidence based practice, and you know changing our field, and I feel like Aphasia Access does such a great job of putting these people together, and I feel like for a student to kind of see what is happening currently in the field and then where we can go and how we can also further the field, because I feel like sometimes our jobs can be a little bit isolating even though all we do is talk about communication and connecting with people, but I think it's important for us as speech pathologists to connect within our field as well and I would also like to shout up Elena Bernstein Ellis who she gifted me with a membership to Aphasia Access when I graduated. It was just the sweetest and kindest and you know just very, very sweet thing that she did, and I appreciate it every day because I get those emails from Aphasia Access and even if I don't have the time in one particular day to like really look at the email or really look at the events coming up, they're in the back of my head and there's still something that I'm like, “Oh that's interesting I should look into that” and I feel like a long winded way of saying Aphasia Access is such a good way to keep on furthering ourselves in the field and not saying staying stagnant like there's so much out there and now we have the access to free dissipated is what I'm saying. Jerry Hoepner: Well, what a what a great takeaway or takeaways I should say for students and I gotta agree Ellen is one of the kindest people out there, so really a good shout out there. It's been fun talking, anything else you want to share before we end our conversation today? Raveena Birdee: Just that I am so grateful for this opportunity and I wanted to thank everybody at Aphasia Access and everyone who made the Leadership Summit possible it was again just such a great experience, one of the greatest experiences so far in my career and you know I want to speak for the Aphasia Tones as a team and say that we were all grateful for the opportunity and it was yeah it was just such a great experience and I highly encourage other students to get involved and see what's out there, I think sometimes as students, we feel like we just don't know enough yet, but these are the opportunities for us to learn to do it from such distinguished people like Dr. Hoepner. Never in a million years would I think I'd be sitting down with a one-on-one conversation with you. So, again just the opportunity is great you guys everyone really inspires us as students to keep learning and I think that's the biggest thing. Jerry Hoepner: Well, the future is certainly looking bright with all of you new students and now professionals out there, so thank you again, Raveena, have a terrific day. Raveena Birdee: Thank you, you too. Summer Marske's segment Jerry: Hi, Summer. How are you doing today? Summer Marske: Good, how are you doing? Jerry: I'm doing really well. I'm excited to talk about the Aphasia Access Leadership Summit and your experiences there. Summer Marske: Yeah, happy to share. Jerry: Say, I have a question for you. How would you describe the Life Participation Approach? Summer Marske: So, the Life Participation Approach I kind of see it as kind of a way to help patients with aphasia get back to doing the things that they love and focusing on things that are meaningful and functional. So basically, prioritizing their life goals and maybe that means incorporating their family members or changing their environment, to help make that possible. Jerry: That sounds terrific. That's a great description. Jerry: So, can you tell me a little bit about how you got involved in the 2021 Aphasia Access Leadership Summit? Summer Marske: Yeah, so I participated as a student Ambassador so basically what that means is I attended the presentations and then I collaborated with the other student ambassadors and we wrote newsletters after each session, which would be then later sent out the next day for the attendees to look through. Jerry: Very cool and I know that people really appreciated those daily updates and recap so thank you for your yeah, thank you for your contributions there. Do you have like a favorite moment from the summit that you want to talk about. Summer Marske: Yeah, so two things kind of come to mind, one of them was Gather Town, which was the virtual conventions ending and that was really cool to be a part of because I got to see and interact and watch different connections get formed between professionals from different parts of the world and I also really enjoyed the yoga session. I myself really like yoga so that was cool to hear from a stroke survivor and see how yoga played an important role in his post stroke aphasia recovery. Jerry: Absolutely That was really cool to see that directly from him agreed and the whole team did a really remarkable job kind of walking through the yoga together. That was pretty helpful in the moment as well in the middle of a conference where we're sitting a lot, so that's terrific. So, what was something that you learned at the Summit that you will kind of take and use in your future? Summer Marske: Yeah, one thing in particular that sticks out to me was the presentation on health care disparities and aphasia and all the different factors that go into stroke and aphasia outcomes. Having this knowledge will be useful in working as an SLP because I'll be treating a variety of culturally and linguistically diverse patients, so knowing how to give them optimal services will be necessary. Jerry: Yeah, I think that has to be one of the favorite talks from the week for me as well. Charles Ellis has so many insights into that and real practical thinking about how we approach that so agreed, I appreciate that as well. Just from your perspective, why should other students get involved in Aphasia Access? Summer Marske: I think other students should get involved because this is a very unique experience to have the opportunity to hear from professionals all over the world and specializing on their areas of interest and different topics regarding aphasia. Jerry: Yeah, agreed. What an opportunity to connect and kind of rub shoulders with some of the most brilliant minds, I think one of the great things I like about Aphasia Access is that everyone is so accessible and you know, no one is kind of at a different level where you can have a conversation with them. I think that is perfect for students to see this community of people all working towards the same goal so yeah, I really appreciate that as well. Mm hmm yeah anything else that you want to share in terms of your experience? Summer Marske: I'm mostly just really grateful to have had this experience it's unlike anything that I've done before. So, I definitely will take all this knowledge with me into Grad school and when working as an SLP. Jerry: That's terrific. Thank you again, Summer, for sharing and hope you'll make it to another Aphasia Access in the future. Summer Marske: Thank you. Thank you for having me. Jerry: You're welcome. Brandon Nguy's segment Jerry Hoepner: Hi, Brandon. How are you doing? Nguy, Brandon: Good. Jerry Hoepner: Good, nice to see you today. Nguy, Brandon: Nice to see you, too. Jerry Hoepner: Well, I'm really happy to follow up with you after the Aphasia Access Leadership Summit to learn a little bit about your experience. Before we get started talking about the Summit, can you just talk a little bit about how you would describe the life participation approach? Nguy, Brandon: So for me, the life participation approach I would believe really wants to focus to help to improve the quality of life of people with aphasia right by helping improve the things that they want to improve in or they might be afraid to do because they may have aphasia and to really overall give them their independence back to live their lives again really. Jerry Hoepner: Excellent that's a great description. Well terrific. Say Brandon, I know you did a presentation, a really nice presentation at the Summit, can you talk a little bit about how you got involved and maybe a little bit of a nutshell of your presentation? Nguy, Brandon: Yeah sure. So last summer, I got a summer fellowship through my university and I was able to conduct my own research project during the summer, through the support of my fellow lab and research colleagues. And so, at the end, I really wanted to share this new information with others, I felt like it was really important and my colleagues recommended me to share it at a conference and they know that that Aphasia Access Leadership Summit this year really matched the theme of my study and then from there on yeah happened. Jerry Hoepner: Terrific. Can you share a little bit of an elevator pitch about what your research was about? Nguy, Brandon: Yeah sure. So, my study focused on issue of representation in the aphasia literature. And so, through a scoping review we extracted the demographic data of over 300 efficient articles from the last decade and we compared those particular data with the true demographics of stroke survivors. And so we found out that certain variables in aphasia literature are underreported such as race as like only roughly 30% of articles noted race in the first place and there were some demographic differences between the efficient literature and the general population who have aphasia, for instance, man and Caucasians were over represented. And females African Americans has been Latinos and Asians others were underrepresented. And so, overall, I know that the field of speech language pathology is emphasizing more diversity in students' faculties, but I feel like we also need to put that same our focus into representation in research. Jerry Hoepner: Oh, that's terrific. What a terrific nutshell version of that and what an important topic say, Brandon. I've got to ask, where are you in your academic program what level? Nguy, Brandon: I'm currently in incoming senior. Jerry Hoepner: That's terrific I really wanted to emphasize that to our listeners let them know you're an undergraduate student you just did a scoping review of 300 plus papers and came up with these really important findings that are relevant to the work that we do, day in and day out, as at least those of us who are in academics and research so wow Thank you so much, and what a terrific opportunity. I know you worked with Dr. Will Evans on that project and just want to emphasize how fabulous that is. Nguy, Brandon: Welcome, thank you. Jerry Hoepner: Okay, well, can you share a little bit about your other experiences outside of your presentation your experience kind of listening in and joining sessions at the Summit this year? Nguy, Brandon: And so, though I guess I you might have I just described my experience with like the poster. Jerry Hoepner: Oh, absolutely you bet. Nguy, Brandon: So, like, I guess, like do you want to restart or like? Jerry Hoepner: Sure yep. Nguy, Brandon: Okay. Jerry Hoepner: Yeah, we can do that. I'll do a lead in I got a little bit maybe more specific. Okay Brandon so, can you share a little bit about your experience at the Summit? Nguy, Brandon: Yeah, sure. So, throughout preparation for the poster, this being my first time you know at a conference and presenting research firsthand. They were just many things that I was just not aware of, and so through the help of my colleagues, I just asked a lot of questions. To step two things, step by step, and really tried to know the perspective of a researcher, I guess, and so, when beginning or on the first day of Aphasia Access, I was pretty nervous, but after watching a few keynote presenters and some of the events, I guess, a lot of nerves just went away and I felt really excited for it and so through watching a lot of the Aphasia Access, I really got a great understanding of how important evasion researches the people and how much passion, people have about this topic, how much people really, really care about it. Yeah. Jerry Hoepner: That's terrific. Do you have a favorite moment from the Summit? Nguy, Brandon: I guess my favorite moment was probably around the end with the award ceremonies and just how I mean just tell supportive people are. How just happy people were how supportive each other, they were in just how excited people were to keep continuing to do like these great things and I felt like man I can't wait for me to be on that stage and to be more in depth within research. Jerry Hoepner: Wow that's terrific. I have to agree just such a great family of researchers and clinicians and people with Aphasia Access. Very accessible as the name implies to talk with each other. So what's something from the Summit that you learn that you'll take with you and use in your future? Nguy, Brandon: So, through I guess the summit, I really got a great understanding of the value of research, where it's not just something that just happens on a whim it's a long process, but the results that come out of it like outweighs the hard work like it's at the end, like it's worth it and it really gave me a way understanding that everyone's in the same boat everyone's working hard, everyone is pursuing this great passion and there's really no easy way to conduct meaningful research and so that is something I just really took to heart. Jerry Hoepner: And that's a great lesson, terrific lesson. So as a student, what would you say why should other students get involved in Aphasia Access? Nguy, Brandon: So Aphasia Access is really meant to get to meet many people that I probably would not been able to meet in you know just in general, like I met so many professors and so many researchers from literally across the world, and that is just unbelievable for me, and it really gives you a creek perspective on if you're interested in research, like what you have to look forward that down the road. Jerry Hoepner: Yeah, that's terrific well thanks for having a conversation with me. Is there anything else you want to share with our listeners? Nguy, Brandon: I'm just you know, I feel like patience and ambition really works out at the end and it's just been a great honor and pleasure for me to present at Aphasia Access and for speaking today on this podcast. Jerry Hoepner: Alright, well, thank you so much, Brandon and look forward to seeing you again at a future Aphasia Access, maybe. Thank you. All right, take care. Nguy, Brandon: You too. Nick Malendowski's segment Jerry Hoepner: Good morning, Nick how are you today? Nick Malendowski (He/Him): I'm doing well, how are you? Jerry Hoepner: I'm very good, thank you for joining us today. I'm excited to hear a little bit about your experience at the Aphasia Access Leadership Summit. Nick Malendowski (He/Him): Awesome, sounds good. Jerry Hoepner: Before we jump into that can you describe how you would just, excuse me, let me do that one over. Can you talk a little bit about how you would describe the life participation approach? Nick Malendowski (He/Him): Yeah definitely. So, when I think about the life participation approach, I often think about how it's helping people get back to what they're passionate about. This isn't necessarily about like what a researcher or clinician wants their client to do, it's about getting that person back to what they want to do. It's like when someone with aphasia has a stroke, or something that like, you know really impairs that part of their life. They definitely have the capability to do the things that they love and that can often really decrease that person's quality of life which can really just put a damper on a lot of things for them. So taking this type of approach with someone can bring back someone to what they love, which I think, as someone in speech sciences, that's really important because you want to help this person do the things that they really enjoy. And I've always been like super passionate about helping others find their passions. It's like, whether that be like finding their passion for what they're doing or finding their passion for something new, I think this approach really aligns with that. So that's why I just think it's really important to take that life participation approach with patients. Jerry Hoepner: All that's a great description and a great summary of what the life participation approach means for sure. Nick, tell me a little bit about how you got involved in the. Aphasia Access Leadership Summit. I know you did a presentation so maybe you can talk a little bit about that as well. Nick Malendowski (He/Him): Yeah definitely. So, I attended Central Michigan University and just graduated in May and I was also a member of the honors program there, so one of the requirements for being in the honors program at Central is that you have to complete an honors capstone project, which is pretty similar to like an undergraduate thesis. So, when I was thinking about what I wanted to do for that project, I knew I wanted to do something to better the lives of other people. Something that wasn't just gonna like benefit me in the long run, but also help other people with whatever that looks like and as a communication disorders major obviously I wanted to do something that was focused in communication disorders as well. I've been working in Dr. Katie Strong's story lab, but prior to approaching her about this project, I knew I wanted to do it with her. She actually is one that offered me the idea of working with Dr. Jackie Hinckley to work on a project that focused on the experience of stakeholders and research. So, prior to that, I really didn't know what that meant. I wasn't sure like what stakeholders were I didn't know what stakeholder engaged research was but it's something I was interested in learning more about which kind of how I got started on that project. Which ended up focusing on like the perceptions of researchers and stakeholders engaged research. So, when we are finishing up that project and began talking about like where we wanted to present the material at Dr. Strong and people suggested the Aphasia Access Leadership Summit and we all agreed it's kind of like the perfect space to present this research at so that's kind of how I got involved and then ever since then I've just been really taking part in all the different like things that we could do, as members of Aphasia Access. Jerry Hoepner: That's terrific. Can you give me just a little bit of a nutshell, these are what we found in terms of that stakeholder engaged research? Nick Malendowski (He/Him): Yeah definitely. So, when we were looking at the different kind of results kind of how we did it is we interviewed a few researchers to kind of hear about their experiences with a stakeholder and each research conference and there were four themes that we kind of got out of that. So it's a new way of thinking so kind of how this conference changed their perceptions and view of working with other people barriers that they experience kind of hearing about like you know, this is what happened this how things played out roles was another one so kind of hearing about like you know this, how my role has changed, these are the things that really were impacted and then the last one, And then the last thing that we found was motivations and so kind of hearing about like what motivated researchers to get involved with stakeholder engaged research because you know oftentimes we hear about top down research endeavors and kind of hearing about how researchers take that ownership and then have other people below them working with them but this is kind of hearing about like why they were motivated to attend a conference that was focused on bringing more people into research. Jerry Hoepner: Oh, that's terrific and what an opportunity to work with both Dr. Strong and Dr. Hinkley on something like this is just terrific. Nick Malendowski (He/Him): It was amazing. Jerry Hoepner: Absolutely. Can you share a little bit about your experience at the Summit outside of your presentation as well? Nick Malendowski (He/Him): So, unfortunately, I wasn't really able to attend to a lot of the conference, just because I was doing a lot of graduate interviews that we had a lot of finals preparation and things like that, but like I said, I was able to participate during the student poster sessions. So, I love really being able to connect with like the other professionals in a live session. I feel like I did miss out on a lot of networking over the past year just because of the pandemic, which makes sense. So, I just really appreciated how this conference was synchronous and I was able to connect with a lot of other people. Jerry Hoepner: That's excellent. Anything in particular that you learned that you'll take with you in your future? Nick Malendowski (He/Him): Oh yeah definitely. I learned so much just about like the research presentation styles and things like that. During other like asynchronous conferences that I attended, I felt that a lot of things were more scripted and weren't as like you know live and having conversations with other people. So, I'm planning on going to academia, so this really helped me gain a lot of skills and how to effectively engage with other professionals in those conversations. Just because I wasn't really able to do that with my other conferences so having this kind of informal conversation-based residence table to talk to other people was really beneficial for me. Jerry Hoepner: Well, that's excellent and you're right, that'll be great preparation. Why would you encourage other students to get involved in Aphasia Access? Nick Malendowski (He/Him): Yeah, you know I would encourage everybody to get involved with Aphasia Access. I feel like aphasia is so misunderstood. Especially to like the general public but also even to some communication disorders and speech pathology students and I think a lot of people don't necessarily know exactly what it is. So, having more students and even professionals get involved with Aphasia Access, more advocacy can take place and more connections can be made. I'm someone who really is passionate about making connections with other people, so I think that's a great way to do that. There's also just so many amazing resources for students to take part in like there's a lot of speakers and networking and just adding a lot to his students' skill set. So I would just absolutely recommend, whether it be just like a single experience or whether getting fully involved like Aphasia Access, I would absolutely recommend anyone to get involved. Jerry Hoepner: That's excellent. Well, it's been fun talking with you this morning, Nick. Is there anything else that you want to share? Nick Malendowski (He/Him): I just think I'm really excited to see what Aphasia Access is able to do in the future as well. You know I've never heard of Aphasia Access before this year so I'm excited to see all the new things that come out and excited to see all the different resources that are available to students and I'm just really glad that more advocacy is taking place for people with aphasia. Jerry Hoepner: Oh, that's terrific and we hope to see you again at other Aphasia Access events. Nick Malendowski (He/Him): Thank you so much. Jerry Hoepner: You bet have a great day. Nick Malendowski (He/Him): You as well. Clarisse El Khouri Faieta's segment Jerry Hoepner: Well, good morning, Clarice. How are you today? Clarisse El Khouri Faieta: I'm doing well and yourself? Jerry Hoepner: I'm doing well. I'm excited to talk to you this morning. Clarisse El Khouri Faieta: I'm happy to be here. Jerry Hoepner: So, Clarisse, I've been asking other students a little bit about their experience at the Summit and I've started out with a question about how would you describe the life participation approach? Clarisse El Khouri Faieta: Well, to me, I think that it's extremely important to put quality of life over anything, especially with people with aphasia. So, I think that the life participation approach does a really amazing job of helping people with aphasia come back into society, so you know when you have a communication disorder. For a lot of these patients it's really difficult for them to kind of integrate themselves into society into even their families close contacts, and so this approach to therapy help centers to kind of give them a push or give them tools to be able to come back to be able to be comfortable with others talking with others, amidst their condition. Jerry Hoepner: That's a terrific description. So it sounds like you're well on your way to learning more about helping people with aphasia for sure. Clarisse El Khouri Faieta: Yeah, I do want to use that in my therapy. Jerry Hoepner: Excellent how did you get involved with the Aphasia Access Leadership Summit? Clarisse El Khouri Faieta: So, I am a graduate assistant for project bridge, so I work alongside Dr. Hinckley and she and Dr. Strong and Nick Malinowski, a student from Central Michigan University, we were working on a project about stakeholder engaged research and perceptions of researchers on stakeholder engagement research on so I did two presentations at the officially Aphasia Access. So one presentation was working directly with Dr. Strong, Dr. Hinckley, and this undergraduate student Nick Malinowski from Central Michigan University on researchers perspectives of stakeholder engage research and then another poster presentation, I did with Dr. Hinckley about survey responses based on what researchers people with aphasia their families thought about the Bridge Conference. So I did two poster presentations. Jerry Hoepner: Very cool, can you tell me a little bit more about that second one the stakeholder perspectives? Clarisse El Khouri Faieta: So the second one, with regard to the survey responses. Right yeah so um there were there was a Bridge Conference meaning the it's like a research incubator that links researchers people with aphasia clinicians and their family. The family of people with aphasia they link them together on like research teams, and so they held a conference in St. Petersburg and so we had a survey before the conference that we sent out and then a survey after the Conference, and so what we did was that we kind of looked at we analyzed what their perceptions on stakeholder engagement research was before the conference and how their perceptions changed after the Conference. So we looked at- we designed surveys, for example, for people with aphasia in a very aphasia friendly manner, we had videos of US narrating the questions to them, we change the font size all of that, and then for the researchers, you know, we had a list of questions like, “What is your thought of stakeholders engaged research?” all of that, so what we got in response to that was that a lot of their views have changed on stakeholder engage research after the 2018 Bridge Conference in a positive manner. So a lot of them or more knowledgeable about SCR and how to specifically help people with aphasia and their families contribute better in the research process. Jerry Hoepner: Oh, what a terrific program the Project Bridges and what a terrific measure of that you know the outcomes at the conference. Wow, that's terrific. Just such an important thing to collaborate directly with those individuals with aphasia about you know what what's going to help them the most in the long haul so terrific and great to hear those researchers' perspectives change to in terms of that collaboration. Clarisse El Khouri Faieta: Yes. Jerry Hoepner: Oh, that's terrific. I'm so glad that was part of your experience at the Summit. Can you tell me a little bit more about your experience outside of the presentations that you gave? Clarisse El Khouri Faieta: So, I was able to participate in some cases conference presentation, so we actually saw one presentation, that is the fruit of Project Bridge with that which I thought was interesting, which was the aphasia and games. Jerry Hoepner: Presentation and I thought that was fascinating. Clarisse El Khouri Faieta: And just to see what Project Bridge can help with to be able to bring people with aphasia and researchers together to be able to present and I just thought they did such an amazing job and I learned so much with regard to how else you know people with aphasia can contribute, and you know, the fact that they made a game for people to face with aphasia to be able to use that's also in a that's also functional you know so that was really interesting. Jerry Hoepner: Yeah agreed. Willis Evans and crew did a great job it was really awesome to see them all present together and yeah and the games themselves were really interesting and fun. So yeah, terrific. Jerry Hoepner: Do you have a favorite moment from the Summit that sounds like it might be one of them? Clarisse El Khouri Faieta: Yeah, definitely that's one of them. I also was able to participate in the presentation of the awards at the very end of the summit and Dr Hinckley actually got an award as well. And, just to be able to hear all the accomplishments of these researchers and these clinicians. You know it helped me to realize that this is such an important field. And it's a little underdeveloped, you know, in the sense that there's not many people that go into this field it's a very niche field. But just all the strides that people have made within this field to help people with aphasia. Especially to be able to you know help them with not only their communication disorder, but also help them reintegrate back into society and give them counseling and all that and make like foundations and clinics and this and that I think just hearing those accomplishments helped me to realize how important this this field is and how rewarding it is as well you know, to hear people's testimonies and all that. Jerry Hoepner: 100% agree, you talked a little bit about some things you'll carry into your future. Anything specific that you want to share that you'll definitely take into your future from this experience? Clarisse El Khouri Faieta: I just think that it's important to definitely put the patient first, before all interest and to also listen to them and their families, because we ha

Hire the Architect: Building Your Financial Structure | Erik Averill, Brandon Averill | AWM Insights #68

Play Episode Listen Later Jun 30, 2021 17:33

With markets continuing their unpredictable ebbs and flows, one important piece of news emerged in a ProPublica article that reported Paypal founder Peter Thiel turned $2,000 in his Roth IRA in 1999 to now more than $5 billion.Its stories like this that highlight the fundamental importance of financial structure. We mention financial structure ad nauseum here at AWM, but what exactly do we mean when we say that?In this week's episode, two of AWM's co-founders, Erik and Brandon, discuss this topic and the framework of growing your wealth through sound financial architecture.EPISODE HIGHLIGHTS(00:32) The importance of financial structure - returns are only a part of your structure(00:58) All the market news you need to know Back to all time market high – so hard to predict which way market will go in short termBiden's bipartisan infrastructure billPeter Thiel's Roth IRA going from $2000 to $5 billion(2:43) What do we mean when we say financial structure?(3:13) “What the wealthy understand is that your financial structure is really what matters.” -Brandon Averill(3:44) Even the smartest only succeed about 15% of the time(4:16) Financial Structure: Taking advantage to all the opportunities that are available to you and don't increase your risk(4:50) Identify the outcomes you'd like(6:33) How financial structure is like building a home“When you're building a custom home, you actually never start with, ‘What pieces of furniture are we going to put in the house?'” – Erik Averill(7:49) The actual definition of investing success(8:22) It starts with the architecture“The first thing you do is you hire an architect and say, ‘All right, what is the master plan of the home that we want to build?'” – Erik Averill(9:30) What are your advisor's motivations?(10:54) Would you gamble in Vegas with a 15% success chance?(11:30) What the world's biggest Wall Street firms can't tell you(12:34) Nassim Taleb's book “Skin in the Game”(13:56) The real purpose of money(14:26) Don't put your earnings at risk(15:24) “Winning the Loser's Game” by Charles Ellis and “Goals Based Wealth Management” by Jean Brunel.

Episode #70: Consumer-led Advocacy for Aphasia: In Conversation with Avi Golden and Angie Cauthorn

director game research winning investing inflation active losers elements passive investing etf trends charles ellis dave nadig

Play Episode Listen Later Jun 8, 2021 57:15

Ellen Bernstein-Ellis, co-director of the aphasia treatment program at Cal State East Bay in the department of Speech, Language and Hearing Sciences and the 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 with Angie Cauthorn and Avi Golden. In honor of National Aphasia Awareness month, we'll be featuring these two stroke survivors who are very engaged in aphasia advocacy. Guest: Avi Golden Avi Golden was a practicing EMT and former critical care and flight paramedic with Northwell EMS and New York Presbyterian EMS. Avi holds a Bachelor of Science in Biology and has extensive experience as a practicing paramedic, both in the US and with Magen David Adom in Israel. After experiencing a stroke in 2007 with resulting aphasia, Avi now is a volunteer EMS. He actively partners with speech pathologists to educate the medical and lay community and is an active advocate for aphasia awareness. Guest: Angie Cauthorn Angelique Cauthorn, better known as “Angie,” is the proud wife of Charles Cauthorn. They live in Moorestown, NJ along with their cat Tigger. Prior to her stroke, her jobs included a national top selling manager of Radio Shack, a mortgage banker, and at the time of her stroke in 2017, the finance manager of one of the largest car dealers in the country. Pre-stroke, Angie was on the Board of the Eleone Dance Theatre for 15 years as well as a youth leader and basketball coach. Angie was a panelist at the Aphasia Access 2021 Leadership Summit. She is now an ardent aphasia advocate and is co-founder of the newly formed Aphasia Resource Collaboration Hub (ARCH). ARCH is working to become a clearing house for available aphasia resources and services in South Jersey, Philadelphia, and Delaware areas. Listener Take-aways In today's episode you will: Learn why it's important to provide aphasia education and communication partner training to EMS students and providers Learn the benefits of engaging in disability sports for individuals with aphasia as a means of strengthening social connections and creating opportunities for fun. Understand the value of having updated flyers in your waiting room or on your office bulletin board Learn about the plans for the Aphasia Resource Collaboration Hub (ARCH) and how the organization hopes to connect stroke survivors, their families, and researchers. Edited show notes. This transcript reflects the guests' original responses as a way to acknowledge and honor their ability to be highly effective and gifted communicators even when facing word finding challenges due to their aphasia. Interviewer: Ellen Bernstein-Ellis Avi, welcome to the podcast. We've had fun just trying to get everything to work today. And you've been laughing a lot already. I know it will be fun to interview you today. Avi Golden: Thank you very much. And you too as well. So we'd like to start with an opening question. Is there an aphasia mentor that you want to give a shout out to? Avi Golden: So for me, again, for me, the speech, a speech pathologist works with me together every day and I love it. I work all the time. I laugh, but very good, but also, I speak with a speech pathologist together talking about aphasia with EMS or police or hospital around the world. And I want to say I forget the name, the guy, the girl, the girl the Karen. Not Karen. The one that we talked about earlier, Kaitlin Brooks? Is that right? Avi Golden: Yes. She and I spoke many times, many times, with EMS or hospitals. And Kaitlin is amazing. You just gave a hats off to speech pathologists in general because you're still working hard on your communication, but you also now have a different role where you're partnering and presenting together all the time, and that's part of what we're going to talk about today. So, thank you. Avi, you had your stroke in 2007. And it was following surgery for mitral valve prolapse. Maybe we could start with what you were doing before your stroke. Would you like to provide our listeners with a little personal background? Avi Golden: Sure. 4, 5, 6, 7, 8 years I was a nor-uh, paramedic in Columbia Presbyterian and North Shore and a lot of part time at EMS. And then later I was riding for critical care and flight paramedic as well. And I was going to go to medical school. But first, I had, my father, who is a radio- he was a radiologist and he, he has a, he is, he was going to surgery twice to have a mitral valve prolapse. So I have a hereditary, is hereditary. So I have prolapse. So I say l, you know what, before medical school, I want to go to surgery and then go to medical school. Okay? Unfortunately, in the surgery, I have a stroke resulting in aphasia. Okay, and Abi, what was your communication? Like right after your stroke? Avi Golden: Sorry, sorry, I'm not laughing at all. I'm crying no--. It's funny, Is for basically one year, again, everybody is different. That's my number one. But for me, basically, one year, all I could say was “Michael” l, and I have no idea who Michael is. I mean, maybe my roommate, maybe my cousin? I don't know. But so everybody's like, who is Michael? I'd say, “Michael, Michael, Michael” So yeah but... You're laughing, maybe at the memory of how surprised people were? You're shaking your head. You would come out with “Michael, Michael, Michael” and people would try to make meaning out of that. And you didn't really have meaning for that. I can already see the teacher in you. Because you're already starting off by saying, “Okay, I'm going to speak for me because everybody's different.” You recognize right away that there's not one rule or one description. Yes, you're shaking your head in agreement. What was the adjustment process like for you? You said that for a long time, you wondered about going back to medical school, but then you told me when we talked last week, that you had three things that you thought about doing. You started to prioritize and adjust to what was going to be next for you. Do you want to share what that was? Avi Golden: So in my head, swear, I swear, I want to go to medical school. So I am working with a speech pathologist together every day, working to try to speak, not, not normally but is getting better. And reading and writing, listening. And so (??) but also, I am teaching with a speech pathologist together, talking about aphasia with doctors, nurses, EMS, etc. And number three, for me, is disability sports. Before, sports, a lot of sports, like (??) well, I don't like it, but hiking or skydiving, and it's the same thing for disability. That's gonna be our focus today is to talk a little bit about your EMS training and disability sports. And we'll start with your EMS and aphasia advocacy first. And as we've already figured out, I probably need a whole episode just for you. And I'm going to feel the same way about Angie when we talk. How did you start as a public speaker and teacher about aphasia? You shared with me that you walked into the National Aphasia Association office (NAA) in New York. Can you tell me about that first encounter? Avi Golden: So NAA was in New York City. Now it's, unfortunately, Virginia. But I, I was, like, six months after the stroke. So I walk in the office, and I say, “Michael, Mike, Michael.” And the guy, the girl, is like, “Thank you. Thank you. I understand, but who are you?” And I say, “I'm Avi Golden, Michael.” And then I will walk out because I'm, I'm, is like, angry. But later on, so Elaine Ganzfried, who, who was a President. Yes, the Executive Director, that's right. Avi Golden: Yeah. So she come back. like, one or two months later, and she said, “You know, I speak, I am speaking with people with aphasia, about aphasia, with doctors or nurses or PA or EMS. Do you like to come and speak about your story? And I say, “Awesome. Michael, Michael. Yes. Awesome.” And that's the first time. Wow, Avi, you're so comfortable. I've been joking that you've been as cool as a cucumber and I'm nervous. I'm more nervous than you about this interview. And you look just so calm. And you've been patient. I've dropped the microphone a few times, and you've been great. Avi Golden: But it's twice, not three or four times. So that's good. Thanks, Avi, you're keeping count. So hopefully, we'll have a fun interview because you are picking up on all the humor. But I was going to ask you if you were a public speaker before your stroke? Avi Golden: No, not at all. Well, I mean, before the stroke, I was a paramedic. So you weren't going around giving speeches. Okay, thinking back on that first time you walked into the National Aphasia Association office and said, “Michael, Michael, Michael” as you told me, to now, how many speeches have you given over the past 10 years? Avi Golden: I will say, I don't know. It's a lot. So I, I speak with EMS, police, firemen, hospital, around the world, because it's Zoom now, but also people with a disability, kids, etc. So, would you estimate more than 50 speeches in the last 10 years? Avi Golden: Yeah, More than 100 maybe? Avi Golden: I don't know, maybe one week or two weeks, every day, every month, every week, one to-- One to two speeches a week? Avi Golden: All the time. That's a lot of speeches over the 10 years. We'll put your contact information in the show notes. And we'll keep you busy. Avi, you've built a beautiful PowerPoint with lots of photos to help share your story. How do you typically prepare for a presentation? Avi Golden: So before? I mean, after the stroke? So three years, I don't have a PowerPoint, so I speak for like two or three days, uh three or four, two or three minutes. And that's it. And then, in my head, it says, “You know what? I have a PowerPoint.” So, I can have a PowerPoint. And then, number one, you, they have, see, what's going on? And also, I understand. I know that it's more before in my head. I know, but then, I also don't know, later, until later on, and, but the EMS are shut down. Do you understand? No, I lost that last part. Avi Golden: I speak with three, three or four minutes, but I don't, I... rarely, I don't know, is, after with the PowerPoint, I have a list of stuff. And I look at the list. And I say, “Oh yeah, I forgot.” But then, I remember because, I, yeah... So it's like not having to have notes or a script because the PowerPoint is leading you through the story. And that serves as a way to help guide you. Avi Golden: Correct And also illustrate things if you do have a moment where it's hard for you to come up with that word. Yeah? Avi Golden: (Laughter) Okay, I know that too. Thank you. So, you and I talked about wanting to use that PowerPoint for our interview. But since this is a podcast, we don't have visual support. And I really want to thank you for still being willing to have this discussion even though we can't provide that to our audience. But that's how you typically go through your presentations is by using the visual support as a visual script. That's become a really good tool for you. Do you have advice for anyone who wants to start being an aphasia ambassador and public speaker like you? What would you advise? Avi Golden: So, number one, I, um, a lot of people who has aphasia, speak with me together with EMT um Speech pathology students or OT students, etc. So, they speak about their stories. So that's number one. They have a PowerPoint. So, it's number two. And number three, please, please come either talk with about one or don't talk, but speak about their, your story. So, number one, please work with a speech pathology because it's amazing. So nice. So brilliant. People, people with speech pathology work with me, Work with them, and it's wonderful. Laughing hysterically but working all the time. But also, people who have a disability please come and speak about their, uh my, uh your story. You were hoping that I would invite more people onto this panel. I said that we will never be able to tell everybody's story (in 30 minutes). But you so firmly believe in collaborating and the strength in having multiple voices. That seems to be a really impactful approach for you. Avi Golden: Yeah. Yeah. Absolutely. And that you like to collaborate with the speech language pathologist. Avi Golden: People with aphasia as well. Yes, absolutely. Speech pathologists, people with aphasia, and you form a team, a partnership. And you said you like living in New York because there's so many resources, right? You were listing all the wonderful places you go-- Adler, Teachers College... Avi Golden: NYU, Mona Greenville is speech pathology, so she, I go twice a week, I go twice a week, but other people is three times a week. So it's Mona and the students. So, it's one, one versus one for one hour, working, and then three or four hours, a group together, and have a good time speaking, reading, listening to jazz, you know, stuff like that. So it's very, very cool. I noticed that you have quite a presence on social media. And that's part of how I got to meet you and see that you were just all over, going to different places and participating in a lot of different activities. Given your connection to EMS as a paramedic, let's focus on that for a moment. What do you want to make sure that a new EMS responder understands about aphasia? You go to schools, EMS training programs, and you're trying to help new EMS students or future EMS providers to understand aphasia. What do they need to know? Avi Golden: So I call or I email all the time, every day, like three or four, three or four different websites or even uh websites or people. And I ask them, I say, “I have, I have a stroke so it's hard to communicate. But before I was a paramedic in New York City, and then unfortunately, I have a stroke and aphasia. I was wondering whether it is okay to speak, or now Zoom about aphasia with EMS or hospitals with a speech pathologist all together.” And about half of them don't go or don't call me. That's okay. And half of them say, “Yes, please come and teach them about aphasia.” Is there something particular that you want EMS, the new paramedic to learn? Because you actually pointed out to me how little information is shared with EMS during training by the textbook itself? You said it's like a 1000-page textbook, and what's the problem? (Avi holds up four fingers) That's four, four what? You're holding up your hand, four? Avi Golden: Four words, four words. About aphasia? Avi Golden: Yeah. So before, before, also, I was reading a lot is, you know, 1000 pages, whatever. And I have is, aphasia is small and saying, “They speak not normally.” So, it's like, I don't know, whatever. It's, it's so small, who cares? You know, I don't do it. I have to go to hospital, I go to, I am going to ambulance to ride with a heart attack or trauma, whatever. So, no problem. But then after the stroke, and aphasia, I went to the textbook, the same textbook, and I read aphasia, and it's four words. And I say that (high pitch voice) it's only four words, in my head, With your fingers you're showing me teeny tiny, just teeny tiny. I will share that our next guest is going to talk about part of her story that was really frustrating to her--something that the EMS responder said to her at her stroke. I don't want to spoil her story now, but it just went to show that that EMS provider must have not been to one of your speeches because he really didn't seem to understand the aphasia. Have you been asked any surprising questions by any of your EMS audience? Avi Golden: One or two times? Yeah, I don't remember, They get interested and they get engaged and you put a real face on what it means to have aphasia and share your experience. Avi Golden: I mean, thank God for you, or EMS. But for me, I'm still, still, not crying but I'm saying, “I want to go to medical school, I want to go to medical school.” but I'm still speaking, so that's, so that's good for me. You do a lot of your aphasia advocacy with EMS because that is your peer group, that was your passion, and you have a strong connection, and they understand that you know their work really well. And you also go out to medical schools and to speech pathology schools and occupational schools and help people go beyond that two or three lines in the textbook, right? I think it's incredibly important work. So, thank you for continuing to do that. And if you think about the many hundreds of presentations you've done, it's having an impact. So I'm going to transition from your life as a public speaker advocate, and ask you to talk a little bit about your involvement with disability sports. Avi Golden: Awesome. Okay. So again, before I was, it's called, it's called Jewish Outdoor Club. Is a lot of people who hike or also like skydiving or scuba diving or small things. So I hike as well together. And then I have a stroke, and aphasia. So I, so, I went to, oh, so, I was in hospital. And I saw the flyer says disability gliding. I said, “What is that?” So I went to the website, and I see is climbing. I said, “Oh, my God it's disability sport, disability people, disability sport, disability.” And I, and I say, “Oh, and it's right down the road.” So I am driving, I was driving, and I went to the plane and sailing with a pilot. And it's like, oh, my God, and it's disability. That's crazy. I love that you brought up that you saw a flyer. Our next speaker, Angie, is also going to share that she saw a flyer and that led her to a really important place. I guess that the lesson is that the resources that we have available in the office or in the waiting room, you never know what people are going to see. And we need to keep those resources fresh and available. So you started the Facebook page that you manage called NYC Outdoors Disability, and we'll put the link in the show notes. How did you start organizing outings? Avi Golden: Now for me, but I live in New York City. So, a lot of, a lot of EMS, sports, like for example, Burke Rehab or Helen Hayes Hospital or Leap of Faith is a disability sport. In the summer water sports and winter skis, you know, and stuff like that. And I, I go and having good time with different sports. And then I say, I ... I, I email, I Facebook with a lot of different disability. But I also speak about, please come with a lot of sports. So, this isn't just for people with aphasia. You're saying it's for people with all different kinds of disabilities. But do they seem to understand aphasia when you come or do you have to teach them sometimes? Avi Golden: I don't care, you know. You're not worried about it. You know that you'll deal with it when you're there. Avi Golden: Exactly. (Laughter) Okay. All right. Avi Golden: And I, and I say, you know, before I was a paramedic, but then I have a stroke and aphasia, so it's hard to communicate. Don't worry, it's all good. I understand. So let's go. Okay. And it's like, Alright, let's go and then all right. So it sounds like your Facebook pages are really a clearinghouse in a way. You're keeping the pulse on what new and exciting activity might be happening. And then you post it on your page to encourage other people just to come try it. Avi Golden: That's it. That's it right there. Ah, so you're not sponsoring these trips, but rather you're getting the word out. You're kind of giving people free PR. Avi Golden: And I'd say just come one time, just one time. Come and just try it. Because first of all, it's free. Disability sport is either cheap or free, I swear, free. And number two, you can try and have a good time. So you know. So you're just trying to get people to engage in activities that will be fun. And to show them that there are things that maybe they thought they couldn't do because of their stroke, but they can do because there's all sorts of efforts being made to adapt, accommodate, and make it happen. Avi Golden: Yes. And also, I have a lot of magazine called, is a lot of magazines. And in the magazine, is either magazine about people with disability, or sports. So, you can go to a website and look for disability sports. And you can see a lot of more things to do for either me. So, you're saying that if you're not in New York, because you're mostly posting the things that are in your area, which makes sense. So you're telling me that if you're not in New York, and someone's listening to this, they should go and Google ‘disability sports' in their area, and they're likely to start seeing activities come up. Avi Golden: Also, unfortunately, it's big cities. But small city, I'm sorry, it's hard. It's hard is walking, uh is driving. But for me, I drove all the time, because I like driving as well, but driving for two or three hours, because it's fun. But that's me. The thing that strikes me is that you've decided to try to become an educator, because that's meaningful to you. It's challenging for you to practice your communication and you enjoy that. And you enjoy the collaboration and connection with the people you're talking to. It seems like you really enjoy talking to students and to new EMS responders and spreading the word about aphasia. And then you also find the reward in disability sports because you're just trying to stay active. And we know that the incidence of depression and the sense of isolation is really high in aphasia. Avi Golden: No, absolutely. Absolutely. And it's so sad. I mean, it's not sad. It's, it's, it's so... I, I say also, also, there, I say, please, I know...I know, it's hard to communicate, and a lot of people, even for me, I, in the beginning, I cried for two weeks, but then I fight because in my head I said, “I want to fight with, I want to go to medical school.” That's my head, my story. But other people, says... in my head, their head, let's go fighting, fighting, fighting. But a lot of people also is depression. And it's so sad. So, I am speaking about depression and say, please come try a lot of things to do-- sports, hiking, working, cooking, whatever you want, but just try, well are more and more We know that exercise alone can elevate mood. So that's the bonus with activity like exercise-related activity. And number two, we know that having something meaningful to do, a meaningful activity also tends to help with depression. So, you get a twofer here-- disability sports are really amazing. So I knew this time would fly by I knew this would happen. But I've really enjoyed it. I will ask you one last question. Oh, go ahead. Go ahead. Avi Golden: The No Barrier Summit. I swear. Sorry. You want to bring that up? Okay. So, tell us why do you like The No Barrier Summit so much? What so, so, so three times, every year in the summer, is disability sports, No Barrier Summit is a disability sports or wounded warriors or kids, whatever. So, in the morning, skiing, scubbaing, hiking, whatever you want, it's fine is really good. But in the evening, people who have disability speak about their story. And it's, it is so powerful because everybody is like, Oh my god, really! You hike. You do it, you, you have blinded, you and you do it or, or scuba lessons, or whatever. Everybody is like holy crap. It's amazing. So you are inspired by what people are able to do. And you think why can't I do it too? Maybe, is that... Avi Golden: Yeah, and I am, and I am now speaking as well. Speaking and also schools, not school, sports. Also too. Have a good time. So that's really been motivating for you. Avi Golden: Yeah, yeah. I will look for that link and put it in the show notes too. Avi, what, what would you say are the most valuable lessons that you have learned as an aphasia advocate? Do you have anything final you want to go out with? Avi Golden: Basically...uh..fight, work, working with aphasia. That's number one. Number two, remembering that, in my head, I want to do it. Whatever you want, Meaning, fight, fight, learn, and then have a good time. Three lessons: fight, learn and have a good time. Thank you, Avi. I've had a wonderful time with this interview and getting to know you more than just seeing you in different places on Facebook and waving to you at conferences. So this has been a delight. Thank you so so much. Avi Golden: Not a problem at all, please. Okay. Hopefully we'll have you back in the future. We just hit the tip of the iceberg today. So, thank you so much, Avi Golden: Not a problem. My pleasure. I'm really excited to introduce our next guest, Angelique Cauthorn better known as Angie, she is the proud wife of Charles Cauthorn. And they live in Morristown, New Jersey along with their cat Tigger. And that's a gorgeous cat that you're petting right now I can see on Zoom. Beautiful! Prior to Angie stroke, her jobs included a national top selling manager of Radio Shack, a mortgage banker, and at the time of her stroke in 2017, the finance manager of one of the largest car dealers in the country, pre stroke, Angie was on the board of the Eleone Dance Theatre for 15 years, as well as youth leader and basketball coach. Angie was a panelist at the aphasia access 2021 Leadership Summit, and she is now an ardent aphasia advocate and his co-founder of the newly formed Aphasia Resource Collaboration Hub (ARCH). ARCH is working to become a clearinghouse for available aphasia resources and services in South Jersey, Philadelphia and the Delaware areas. Angie, thanks for helping me with the name of that dance company, which I know has a very special place in your heart. Angie Cauthorn: Yes. It was founded by my brother, Leon Evans, in 1992. So, thank you for making sure I said that correctly. I am just going to start with my first question for you, which is, how did you end up being a panelist for Aphasia Access at the Leadership Summit? I am so, so grateful that you said yes, when we invited you to come be a guest today. Thank you. Angie Cauthorn: Thank you so, so much for having me. Thank you for that wonderful introduction. As for the leadership summit, Dr. Gayle DeDe of Temple University called and asked me to be part of the summit. Because of the pandemic, I had done some online work with some very young, talented people. And I was asked to give my, my opinion on some tricks and tips that I had learned, and my general feelings about receiving therapy online. And I was happy to lend myself and my time when I was asked. You mentioned tips, and you gave us all a tip about passwords when you did your presentation to the Aphasia Access Leadership Summit. Would you share with our listeners today? What was your tip about passwords when you're on Zoom if you're working with people with aphasia? Angie Cauthorn: Well, what everything is, when you send the link it, you know, you can just click the link, but sometimes it asks you to prepare a password for security reasons. But that, remember you're dealing with people with aphasia and numbers can be very confusing. And they can cause an additional barrier to someone maybe joining your group session or your private session. So just be mindful of the passwords that you use and try to use something that's aphasia friendly. I think that's a really important tip because you don't want that password to be the first barrier before they even start. Angie Cauthorn: Before they even start. Then they're coming in with kind of a down feeling. It's just again, showing people what they can't do, rather than how they can participate. And Angie, we were so glad to hear your message at the Aphasia Access Leadership Summit. I was wondering what did you, as a consumer, get out of being at the summit? Angie Cauthorn: Well, I was at the summit and I was on a panel with Dr. Charles Ellis, which is the one where I gave the tip and then I did a presentation. But I stayed the whole week. And I was literally inspired by the people, the kindness, the generosity of the speech pathologists. The, it gave me a different idea of health care. Everyone was just, no one was really, there was no, I'm sorry. There were no panels on how they can get more money from Medicaid or Medicare or anything like that. It was all about how they can maximize people's health. And it was an absolutely, I want to say, loving experience. It was how everyone was concerned about how they could help a stranger get through a hard time in their lives. It was very refreshing. You know, I have to agree with you. I found it really refreshing and inspiring too as I listened to each and every panel, and poster. It was really an inspiring conference for me too. Angie Cauthorn: So kind, so thoughtful, and just wanting to help. And that's what I really kind of took from it, how everyone was on the same page. It was really inspiring. Angie, your bio is a small window into what a busy and active and full life you had before your stroke. And you shared with me yesterday in the email that today's actually the fourth anniversary of that stroke. Angie Cauthorn: Today is the day. Yeah, yeah, it's, um, it's a little different. It's, um, it makes you a little melancholy, I guess, in a way, but also joyful, because you know, you're still here. The alternative is everybody doesn't make it through a stroke. And so, you have to celebrate that. Never mind what you can't do, the fact that you can do anything has to be celebrated. And keeping a positive attitude with it is very hard to do sometimes, but absolutely necessary. So, I am celebrating. But also, taking it all in, taking full account of everything, is always a good thing, as well. But, you know, the, these milestones that you hit um...are...a lot. They're very meaningful. And I think you're right, we learn in life how to both carry the grief and the joy and make sure that we acknowledge and understand that, that we can do both together. Angie Cauthorn: Yes, yes. You must. You must. So you shared that after a long day at work, four years ago, you were winding down, and you noticed you couldn't reach for a glass of water. And your speech sounded a little funny. So, you actually told your husband to call 911. Can you share your experience with the first responder? Angie Cauthorn: I most certainly can. The young men, two police officers and two paramedics, came in. And the young man didn't seem to have a good understanding of what was going on. He told me, I was having... a panic attack. And as much as I could muster in my little box of words that I was now working with. I said, “Son, I don't, I don't do panic attacks. I don't, I don't even know what that is. I promise you. I don't know what this is, but that's not it. And I need to get to the hospital.” And they were almost kind of, what is the word, indifferent on if I, if I needed to go or not. And I was like, “Yeah, please take me now.” I think that that story supports the work that Avi Golden, who was my other guest today, is doing by trying to raise aphasia awareness with EMS schools, EMS students, EMS responders. He wants them to have a better understanding of what aphasia means, how to communicate, and how to be a better partner in these situations. So, we're gonna give him a shout out for continuing to do that work because this is a story that reminds us why it's so important. Angie Cauthorn: It's so important because if I would have said, oh, maybe I am having a panic attack, and maybe, maybe I would have went to bed. These are sometimes the stories that you hear, if somebody was having a stroke that they went and took a nap. That is so true. In fact, Angie, I will share that is what my mom did. She took a nap. Angie Cauthorn: Yeah, because you don't know. Because when you don't lose consciousness. I did make it a point, as soon as things went a little to the left that night, I made it a point to try to acknowledge everything I was feeling. I made it a point to say, “Okay, stop. What can I feel? How does this feel? What's different?” And my hand, that was clo--, my right hand was cold to touch anything else. That was my biggest thing. Alright, so just paying attention and knowing yourself. You knew that you needed to get to the hospital immediately. Angie Cauthorn: Yeah. Then you got to the hospital, and you needed your husband to help advocate for you there. Angie Cauthorn: Because my language was disintegrating. It was just... not working. And so, I got my husband in the room with me. And I told him, “You have to go tell these doctors that I am... I'm smart.” Smart. You're smart. You want the doctors to know that. Angie Cauthorn: I want them to know I am smart. I am not on drugs. I don't know what this is. But I have to go to work in the morning, so we have to get this wrapped up. I was supposed to open the dealership that day. And I will mention, as a quick sidebar. I never made it to work. I still haven't been back. Instead of going to work, you spent three days in the hospital, you told me, then you were discharged home. I'm assuming next came therapy. Share with our listeners, how did you start to realize what you could or couldn't do? What was that process like? Angie Cauthorn: It was trial and error. You don't know, when it comes down to aphasia, you don't know what you don't know until you're faced with it, until someone ask you. I didn't know I couldn't tie my shoe until I went to go tie my shoes. So, if I'm walking around in sandals for three months, I didn't realize that, oh, this is a problem. Writing my name, or the one I love is saying the alphabet. How often does, when was the last time you actually, Ellen, said the alphabet all the way through? Well, I'm a speech therapist so I do get to say it, but I know the point you're making. Yes. Angie Cauthorn: Right, nobody's, you know what I mean? So those things were very... telling to me. And it was just about trying to figure out and trying to navigate... what was missing. So, you started therapy. I know you were working hard. Can you share how you found your first aphasia group? How did that happen? Angie Cauthorn: I was in my doctor's office. She had a flyer on the wall. It said... every first and third Tuesday, I think it was, and of course, that's, that's hard to kind of figure out with or without aphasia. Okay, true, true. Angie Cauthorn: You know, you're missing a lot. And so, my husband and I, we finally figured it out, which one we were going to go to, and he took off for work and he took me and it, I felt like I had come home. It was like a weight was lifted off of me. Because I found a community that was open, understood. And a place where my aphasia was a non-issue. So, we're, we're talking about the Adler Aphasia Center, right? I'm gonna give them a shout out. Angie Cauthorn: And you should. Why would you then recommend aphasia groups to other stroke survivors? What's your advice there? Sounds like it was a good place of connection for you. Angie Cauthorn: I would advise it for the friendship, for the validation, to be heard, and to more importantly, be listened to. And I'm not a, the person who is a group therapy Kumbaya person. That's not, that's just not my nature. But I have definitely...but it's been a godsend. It really has been a, such a huge help. And a lot of us are, you know, are more independent and this is, you don't know what you need until you find it in that particular instance. I didn't know that was something I needed or should have been looking forward to until I literally stumbled into it. You also mentioned to me that you have a special place in your heart for Dr. Gayle DeDe's aphasia choir, and I'm also a very big aphasia choir advocate. What has that been like for you, participating in the choir? Angie Cauthorn: I'm just going to, first of all, let me just say, the Philadelphia PACT choir is probably the best choir of aphasia of all time. I'm just gonna go ahead, I'm gonna lay it out there. Dr. DeDe knows what I'm talking about. This is great. I love it. I love it. Well, you haven't heard my choir yet. But that's okay. Angie Cauthorn: We should have like, a community...like uh.. A sing-off? Angie Cauthorn: Yeah, a sing-off. Not that we're competitive, Angie! Angie Cauthorn: No, no, no, just a friendly, let these cats know from Philly, Gayle DeDe takes it very seriously. No, she's such a genuine, she, first of all, she really does, with kindness and sincerity and a loving disposition, runs a tight ship. She is, she just wants to make sure everyone understands, everyone gets it. We don't move on until everyone is comfortable. We take votes on what we're going to sing to make sure that everyone is comfortable. It's just really, a really, a good time. And she really does an outstanding job of making it somewhere you want to be. It sounds like Adler Aphasia Center has been a place where you've made connections. The choir has been therapeutic and rewarding for you. Now, four years later, you've become engaged in a special project, the Aphasia Resource Collaboration Hub, or ARCH for short. What is that budding nonprofit about? Angie Cauthorn: ARCH is about being the landing pad for people with aphasia, the researchers, the clinicians, all of these different stakeholders to know and be made aware of the information that's available to for people with aphasia to be better. I was a, it kind of started with me having a very car..., I'm sorry..., a very…. conversation with Dr. Martin from Temple University. And she was telling me about all the resources that were available to me in this tri-state area. And it was a lot. And I wanted, we wanted to put a position, put ourselves in a position where there was one place where I could find out about all the research, clinicians can find out about the research, researchers can find people with aphasia, so we can do the research We wanted to find a way to kind of bridge the gaps, to fill in the gaps. So, people, it would be a smooth transition, and a smooth transfer of information. And that's really what ARCH is about. So like a clearing house a place to help connect people who need the resources and people who want to give them resources. Angie Cauthorn: Yes, exactly. It's not as if you just accidentally stumble and happen to see a flyer posted on the wall behind you. You want to make it a much more intentional effort to connect people. Angie Cauthorn: Right! Because aphasia is so... not well known. And I think that is one of the bigger issues. You know, if people have Parkinson's, you know what to do. You tell them you have aphasia. They want to know if you're contagious. It's true. We know that only about 10% of the public even know the word aphasia, even though there's over two and a half million people in the United States with aphasia. Angie Cauthorn: Yeah, right. You shouldn't have to say I have a stroke and I have brain damage. I should be able to say I have aphasia. There should be a level of recognition and that's what we have to be working on constantly. I started to say, it shouldn't just be flyers on the wall, but flyers on the wall are important because that's how you saw the notice about the aphasia group. So we need that. And we need these clearing houses that will build more bridges. So what's your short term goals for the next six months for this new organization? Angie Cauthorn: It is to advertise, get some funding lined up. And to advertise, advertise, advertise, and educate. And I say advertise. But I probably mean educate. But we have to tell the public about it. We have to secure... give ourselves the opportunity for people to know what's going on, and the people that have had aphasia, that have kind of fallen out of therapy, because with aphasia, sometimes you don't even realize it until by the time therapy is over, is around, in my opinion, the time that therapy should be starting. So they need more resources. When they're discharged, they need to continue this process of learning to live well with aphasia, as we say. Angie Cauthorn: Right. and giving people a flyer when they leave the hospital, it just ends up on the dining table. You have to be able to reach them later. Because they may not be able to process everything that's being, all this paperwork. And there's something about aphasia in there. Okay, again, I can't tie my shoe. I have bigger problems right now. It gets lost. So, we have to keep coming at it and keep making those connections again and again. Angie Cauthorn: Yeah, so, so important. So what message would you like to share with speech language pathologists? What do we need to know when working with our clients? Angie, what's your take home? Angie Cauthorn: My take home would be to understand that your clients are still mid- avalanche when you see them, when you meet them. They are, you are reaching out your hand, telling them-- just grab my hand. And they hear you, but they can't reach you. And they don't really know what you're saying. You're just a person that they kind of, you're almost in their peripheral vision. Just know that and be patient with them, even when they're not patient with you. Angie Cauthorn: And I one thing I can say I did get from the Leadership Summit, meeting all these speech pathologists, they are seemingly just innate with the kindness that is required. But just to say, again, be a little more deliberate with your patients. If you can, and just know that these, your patients, are... mid avalanche, and they have no idea how it's going to go down. So, your kindness is so important. I think that's a good reminder. And would you give a different message to your fellow stroke survivor after discharge from speech therapy? What would you tell that person? Angie Cauthorn: Be consistent with your therapy, do not deviate from what you were told to do? Go get math books. Work on that on your own time. One thing I did is, I made a playlist of all my favorite songs from my youth, and I would practice those songs. That's an upbeat way to go at it. Yeah, yeah, I did that. And I call it, it says “aphasia stuff”. That's what I call the playlist. And it might be, you know, just old rap songs from 1984. But those are songs that I knew I knew. I know, I know these songs, okay. And I would work on my verbiage in the mirror and just try to sing the songs. What I love about that is aphasia is so different for every individual, but you found something that worked for you that was creative. And that, I hope, with all that good music, also made you feel a little bit better too. Angie Cauthorn: It did, it did. It's so important, so important. I'm going to wrap-up with a long-term life goal for you, Angie, Something you shared with me-- that you wanted to give a TED talk. I think that's going to happen someday. Because I think if anybody should give a TED talk, it should be you. You have so many insights and such wonderful energy to share. What would be your topic and what might be two or three points you'd want to make in that Ted Talk? Angie Cauthorn: Well, I think I would call it Lost in Translation, the Battle with Aphasia. I will talk about how it changes us, and all our relationships. I would also talk directly with the people with aphasia. And let them know, listen, it's going to be hard. It's going to be tough. And every, all your friends that you have now will not all make the journey with you. But a few will, and be consistent, be kind to yourself, have a positive attitude, and to call aphasia by its name. That would be, the, what I would, I would talk about if given the opportunity, I hope you will because that's a message that needs to get out. And that's the perfect message for today's episode, given that we are celebrating June as National Aphasia Awareness Month. So, thank you. Thank you so much for being my guest today. Angie, I could sit here and talk with you for the next hour. And we could, we might just turn off the record and keep talking. So thank you so much. Let me just wrap this up and say thank you again for sharing your expertise, your insights, your knowledge with us, with our Aphasia Access members. Angie, I appreciate it so much. References and Resources Avi Golden NY Outdoors Disability https://www.facebook.com/groups/nycourdoorsdisability Leap of Faith Disability Sports https://www.lofadaptiveskiers.org/ No Barriers Summit 2020 https://www.nobarriers.live/ No Barriers https://nobarriersusa.org/experiences/ Angie Cauthorn Aphasia Resource Community Hub (ARCH) archresource@gmail.com Philadelphia Aphasia Community at Temple http://www.saffrancenter.com/p-a-c-t/ Aphasia Rehabilitation Research Lab--Temple University http://www.saffrancenter.com/about-us/aphasia-rehabilitation-research-lab/ Adler Aphasia Center https://adleraphasiacenter.org/

Investing Legend Charles Ellis; Inflation, Active vs. Passive Investing

ETF Edge

Play Episode Listen Later May 17, 2021 38:26

CNBC'S Bob Pisani spoke with Charley Ellis, author of best-selling books like Winning the Loser’s Game and The Elements of Investing – along with Dave Nadig, Director of Research at ETF Trends. Charley Ellis discusses active versus passive investing, why he’s not so hot on bonds, the impact of rising inflation and more. In the ‘markets 102’ portion of the podcast, Bob continues the conversation with Charley Ellis.

Knox Brew Stories: 04/19/21 (Charles Ellis & Tony Schmitt)

stories interview tap knoxville brew schmitt charles ellis

Play Episode Listen Later Apr 20, 2021

Knox Brew Stories is a weekly live radio show and podcast that offers an in-depth look at the craft beer scene in Knoxville, and the latest craft beer news from around the country and all over the world. In this episode you'll find our regular weekly news about craft beer, with a returning guest host (back by popular demand!) and interview with a couple friends from Central Filling Station, Yee Haw Brewing, and the Casual Pint:Brew News (3:47)Interview with Charles Ellis and Tony Schmitt (11:05)This Week on Tap (40:52)Next Week on Tap (49:51)Host: Zack RoskopProducer: StrykerGuest Co-Host: Candace PrestonBe sure to tune in live every Monday at 6pm at http://ChannelZradio.comand check out https://www.knoxbrewstories.com/

Episode #68: Communication Access in Health Care Settings During Covid: In Conversation with Bob Williams & Tauna Szymanski from CommunicationFIRST

covid-19 director netflix health washington ghosts action americans doctors zoom ms office joe biden chinese wild executive director spanish dc healthcare language african americans congress white house boss states hearing speech connecticut responding streets guidance racing framework parkinson medicare centers bruce springsteen civil rights edited acc references innocent icu co director human services ppe us department settings cms affordable care act tbi icf gs hhs aac ocr youngstown disabilities act microsoft word herculean policy director east carolina university asbury park medicaid services thunder road legal director szymanski rehabilitation act tom joad jungleland bob williams cal state east bay hearing sciences hartford hospital rosalita civil rights ocr charles ellis

Play Episode Listen Later Apr 14, 2021 45:02

During this episode, Ellen Bernstein-Ellis, Co-Director of the Aphasia Treatment Program at Cal State East Bay in the Department of Speech, Language and Hearing Sciences, talks with Bob Williams and Tauna Szymanski from CommunicationFIRST. Guest Bios Bob Williams, Policy Director of CommunicationFIRST, helped to co-found the organization in 2019, after retiring from a distinguished four-decade career in federal and state government and the nonprofit sector, most recently as Director of the US Independent Living Administration at the US Department of Health and Human Services. He is a nationally recognized leader on policy issues relating to supporting people with the most significant disabilities to live, work, and thrive in their own homes and communities. For over 60 years, Mr. Williams has relied on an array of augmentative and alternative communication (AAC) strategies, including a series of speech generating devices over the past three decades. He lives with his wife in Washington, DC, where they enjoy visits with the grandkids, walking along the riverfront, Netflix binges, and all things Springsteen. Tauna Szymanski became the Executive Director and Legal Director of CommunicationFIRST in 2019. Previously, she spent twenty years working on climate change law and policy, including 13 years at an international law firm in London and Washington, DC, where she volunteered and represented clients pro bono in disability rights and inclusive education matters. Ms. Szymanski has graduate degrees in law and public policy. She grew up around the world as the child of US Foreign Service Officers and is multiply disabled. In today’s episode you will: Learn about CommunicationFIRST’s efforts to advocate for policy reform in order to protect and advance the rights of individuals with speech-related disabilities Hear the story behind the June 2020 ruling to protect the rights of individuals with communication disability to have access to their communication support partner in the hospital, even during Covid Find out the benefits to filling out the Communication Tool Kit before a person with aphasia enters a hospital Learn about using the Hospital Visitation checklist offered by CommunicationFIRST Find out why we talk about Bruce Springsteen Edited show notes: Greetings to our Podcast listeners, This is Ellen Bernstein-Ellis, your host today, and you’re listening to an updated version of episode 68 with CommunicationFIRST. Let me share what happened to the original podcast because there's a valuable lesson in this story. Bob Williams, one of the guests that you’ll be meeting shortly, uses an assistive device to speak. He is indeed an eloquent and powerful speaker, as you will soon hear. Bob spends considerable time preparing for interviews by prerecording content on his device since real time responses can be time consuming. However, as a matter of principle, Bob always opens his presentations by typing in real time in order to educate the public by providing some insight into the fuller experience of being an AAC user. The remainder of his interview responses are played at a more typical speaking rate. Unfortunately, because I didn't provide explicit instructions to our podcast producer, Bob’s response in that section of the podcast was edited from four and a half minutes to 30 seconds to eliminate the audio lag. I failed to catch this unexpected revision in the final copy before it was posted. I want to thank Bob, and Tauna, our other guest, for bringing this to our attention so we could redo the episode and restore his original response as it was delivered. I sincerely offer my apologies and appreciate their gracious understanding as we worked together to resolve this issue. Thank you too to our podcast producer for quickly responding to our concerns. To our listeners, Bob’s first response is a small but important window into the effort it takes to be an AAC user and also how to be a respectful listener and effective communication partner. I found Bob and Tauna's interview profoundly impactful. They are passionate, expert advocates, as their mission states, in advancing the rights, autonomy, opportunity, and dignity of people with speech-related communication disabilities and conditions. Be sure to check out the CommunicationFIRST website at www.communicationfirst.org Interviewer: Ellen Bernstein-Ellis Welcome to both of you today. Thank you for being here Bob, do you want to add anything to your impressive bio? What brought you to CommunicationFIRST? I want to explain to our listeners that for this response, you're going to respond in real time, which means the listener is going to hear some typing as you compose your response. Thank you, Bob. Bob Williams Thank you. Over 50 years ago, my parents, brothers and sisters, and I started to figure out ways I could express myself and that is why we can have this conversation. CommunicationFIRST is committed to making certain that all children and adults, and older Americans with disabilities that need ACC get that same chance. Bob, you and I spoke before the interview of how important it was to actually demonstrate to show how laborious and effortful it is for people with communication disabilities to communicate effectively, and to how important is for the partner to be patient and develop good listening skills. And you're actually the one who pointed out the corollary with individuals with aphasia, who may also need the partner to give them more time and have more patience so they can participate fully in the conversation. So thank you for sharing that and making sure that lesson is out there today. I'd like to share my first lesson about being a good communication partner for someone using AAC, because I set up our tech meeting, and learned the hard way that the password was actually a barrier to you joining our meeting. By the time we figured out the problem, there just wasn't time for you to participate because you had another Zoom meeting you had to attend. And that one was at the White House, so that meeting won out. It left me totally impressed, of course. I decided this was a good lesson to share with our listeners. I've learned a lot in preparing and appreciate this honor of working with you for this interview. Thank you. Bob, how do you get ready for something like this that involves prepared and live responses? Bob Williams I prepare most of what I am going to say in advance. Having worked with members of Congress, a cabinet secretary, and others who place a high value in brevity, has really developed my skills. To do this, I cut and paste, and repurpose as much as what I can, but it is time intensive. For the last 30 years, I have composed everything on my computer and transferred it to my speech generating device, which has advantages and downsides. Now, I am starting to experiment with the hybrid approach. You heard what I spelled out on my device. And what you are hearing now is the read aloud feature which is included in Microsoft Word. That voice quality is better and it cuts out the transferring and other hassles. Once I get the routine down, I am confident it will improve things. Responding to things in real time is never easy. It is just something you deal with as best you can. Bob, before we started recording, you explained that there will be some pauses between our questions because you have to physically reposition the cursor to read your next response. I just want to give the listener a heads up that they may have to wait a moment. Getting back to what you just said, Bob, what are the implications of what you shared for the people we work with who have aphasia? Bob Williams If there is anything I want you to take away from what I say, it is this, the people you work with are making huge motoric and cognitive effort to express themselves and to be understood, regardless of whether they are using a speech generating device or not. The work they do is often Herculean. But many never realize that and view individuals with aphasia and others with significant expressive disabilities as less than, as having little to no human need, ability, or right to express themselves and to be heard. Because you and I know better, our most fundamental duty is to shatter this narrative. The idea that we can acquiesce and be complicit in letting people live incommunicado must become morally repugnant. Bob, that gave me the chills. It's so eloquent and so beautiful. Thank you. I think it leads us to the next question. It’s about the passion you and Tauna both share for communication access. What are the mission and values of CommunicationFIRST? Bob Williams We often get asked how we can expect to defend and expand on the civil rights and opportunities of people who seem to have nothing in common, except, of course, that we are voiceless and powerless. I was among those who was asked much the same question about what was then seen as this pipedream called the Americans with Disabilities Act. It is true we are diverse demographically, in terms of the disabilities and conditions we have, when and how we acquired them, how we communicate and a host of factors. But here is what unites us. Like all people, we have the same intrinsic human need. The same human capacity and the same inalienable human and civil rights to effectively express ourselves and to be understood. Recognizing these truths about ourselves, that there is strength in our numbers, and recognizing we have rights and must demand them. These are the essential building blocks of CommunicationFIRST and the human and civil rights and liberties movement we are forging. Thank you, Bob. My next question is for you, Tauna. Who do you serve? And what is your connection to aphasia? Tauna Szymanski Thank you, Ellen, for the invitation to join your podcast today. This is actually our first podcast, so we're having a lot of fun with this. As Bob suggested, CommunicationFIRST is a very broad and diverse organization in terms of the group of people we seek to represent. So, the one commonality is that we will seek to advance the interests and the rights of anyone who cannot rely on speech to be understood, and that includes people who were born with a speech disability, and those who acquire a condition or disability later in life that makes speech communication difficult, and that includes people with aphasia. I'd like to hear a little more about the history of CommunicationFIRST. Tauna Szymanski Sure. Well, as you noted earlier, we were only founded about 18 months ago. We publicly launched in October of 2019. It really came about over the prior few prior few years, as we realized that there were well established organizations. effective organizations, that represented people with the other two types of communication disabilities, vision and hearing disabilities, but strangely, not a single organization that really worked on the third type of communication disability, speech related disabilities. So there were, you know, there are some organizations for professionals and there's organizations that sort of worked on broader issues impacting folks with intellectual and developmental disabilities, some of whom have speech related disabilities, but no one who's really focused on the rights and interests of this large population, which is just equally as large as those other two communication disabilities. It came about because of the realization and the fact that the issues are just as intractable, if not more so, than for the other two populations of people with communication disabilities. I'm really grateful that you collaboratively started this organization. I didn't realize it was a new one, because you have already accomplished so much, just looking at your website. How are you seeking to achieve your mission? Bob Williams Well, it begins like everything else involving changing hearts and minds. Creating greater justice must begin in conversations like this one. Most of all, it takes creating the opportunity, spaces, and support for more of us who need AAC to get to know each other. And to recognize that we share not just the same kind of challenges, prejudice, and discrimination in common, but that the civil rights, accommodations, and support also are largely the same. And we share a common responsibility to each other to bring such changes about. Thank you. You are an eloquent speaker. Can you explain why CommunicationFIRST views this as right as a civil rights challenge? Bob Williams The National Aphasia Association 2020 survey on public awareness surveyed 1001 persons asking if having a speech disability is a sign that someone has an intellectual disability. Fortunately, 58% of the respondents said they either strongly or somewhat disagreed that is a true statement. But 42% said they either strongly or somewhat agreed with the statement. You and I know there is nothing soft or benign about the bigotry of low expectations. Or of social isolation, institutionalization and a lifetime incommunicado. We all have witnessed its absurd and horrid injustices. It is time to call it what it is. And to end it. This is why we do this work and need allies like all of you to join in. We have to work together. That is absolutely right. We're always stronger together. What is something big that you've learned during COVID, about healthcare ACC disparities? Tauna Szymanski I can try to start out with this one. So as I mentioned, we launched only six months before COVID broke out. So, we had to very quickly pivot our plan or rollout for the first year to addressing what we quickly realized would be a very significant issue impacting our population-- one slice of which we knew would be these new no visitor policies in hospital and congregate care settings. Especially because we know that virtually everyone in our population who has expressive communication disabilities needs some kind of human physical support in order to communicate. After everything shut down, and hospitals started implementing these no visitor policies, we issued toolkits about rights. Then we started getting calls about this issue and, in the course of doing that work, I personally have really come to appreciate and develop a much broader and deeper understanding of what communication really is and how much broader it is than just speech and hearing and vision. Also how individualized communication and communication supports are. That's something that's actually been a personal blessing to me and in the work as we started with this organization. It's been an unexpected gift, really. Thank you for sharing that, Tauna. And Bob, do you want to speak to something you've learned during COVID and health and AAC disparities? Bob Williams We have known about the deep disparities in health, education, and economic well-being that are part of the everyday lives of African Americans and other people of color with and without disabilities long before the pandemic and the vile white supremacy of the last several years. Because of the work of the National Black Association for Speech, Language and Hearing, as well as researchers and practitioners like Dr. Charles Ellis, and others, we are learning more. Not just that black, indigenous people of color and those who are multilingual are more likely to acquire more significant degrees of like aphasia, Parkinson, TBI and early onset disabilities like cerebral palsy, which require them to use an array of communication and other services and supports. But they also face disproportionate barriers and discrimination in accessing the services, AAC, and assistive technology required to each lead a decent life. Absolutely. And I'm admirer of Dr. Charles Ellis's work as well. So Bob, what needs to happen to get policymakers to understand and address both the systemic barriers as well as effective practices that research is identifying? And how can we help to elevate the need for action. Bob Williams I mentioned Dr. Ellis, a leading expert on aphasia among black people and the director of the Communication Equity and Outcomes Laboratory at East Carolina University. Over the past several months, I have read his work as well as that of others doing similar research. And I think it's accurate to say we know and are learning more about what inequity in access to AAC and communication supports look like, as well as its devastating effects it has on people. We must now create urgency around what communication equity must look like and what we must do to retain it. In January, we prepared and were joined by 47 other organizations in submitting a Communication Equity Call to Action to provide the Biden administration. In it, we call on them to take concrete actions to create equal access to AAC, regardless of one's race, disability, age, language, or other status. Check it out on our website. And we will be glad to talk to anyone who wants to become more involved in our efforts. Thank you, thank you, for the work you're doing. That leads to the topic of what introduced me to CommunicationFIRST as an organization this summer in the first place. Could you please tell our listeners how you met Patient GS, that patient who's actually behind the June 2020 ruling to protect the rights of individuals with communication disability to have access to their communication support partner in a hospital setting, even during COVID? Tauna Szymanski As I mentioned earlier, in March of 2020, we issued a COVID-19 Communication Rights toolkit, which was designed to be a way or resource for folks who were going into the hospital due to COVID, who needed to ensure that they could access the communication support they needed in that environment, even if that communication support needed to be another human being. So in other words, it was an accommodation request under disability rights laws for someone with a communication disability to be provided a reasonable modification to those no visitor policies and to other non-human communication supports like AAC and other communication accommodations that might be needed. That had come out in late March and I believe it was about two weeks later, I got a cold call on our main line from a woman in Connecticut whose mother had just been taken to the hospital less than 24 hours prior by ambulance. She was a 73 year old woman, GS were like initials to keep her identity confidential, but she's since come public. Her name is Joan Parsons, and she had acquired aphasia, I think 11 or 12 years prior due to an aneurysm and she was going to the hospital for non-COVID-related reasons. Her family, who had always accompanied her in the ambulance on necessary hospital visits and had remained with her in the hospital to ensure that she could communicate and understand, were prevented from doing so. One thing led to another and we attempted to advocate and ultimately we needed to file an administrative complaint with the Office for Civil Rights at the US Department of Health and Human Services and something we did with Disability Rights Connecticut and a few other disability rights organizations. Can you can you share a little bit more about what the ruling entailed? Tauna Szymanski We filed that complaint in early May and very quickly the Office for Civil Rights (OCR) opened up what's called Early Case Resolution procedure, which all the parties have to agree to. The complaint was both against this individual hospital, which was Hartford Hospital in Connecticut, but also against the state of Connecticut for not having a statewide policy that reminded hospitals of this need to include exceptions in these no visitor policies for people with disabilities who needed in person support. It was sort of a two tiered complaint. Over the course of the next month or so, OCR, and Connecticut, and the hospital, and the disability groups, negotiated resolution to those complaints. Ultimately, the resolution was an agreement for Patient GS, to be ensure that she could have that in person access. She was actually still hospitalized, after getting diagnosed with COVID, and was in the ICU for this entire time, six weeks. She was still in the hospital, I believe, that day we signed it. She ended up being released later, but we had resolved the practical issues earlier so she was able to be supported. But the broader results of this complaint was that the state of Connecticut issued emergency regulations that essentially were a policy that laid out the law and said, yes, people with disabilities are entitled to have a support person present if needed, despite hospital visitor policies. It laid out a lot of the details about PPE and safety precautions that need to be taken. It wasn't a lawsuit, but rather, it was a decision that was endorsed by the Office for Civil Rights. It became a national precedent and an indication of what the federal government was saying that, yes, this is what needs to happen. After that, we didn't have a whole lot of issues. We would just point people who were calling with these issues to that resolution. That was the backbone and that came out June 9 of 2020. That had really widespread impact that summer. I saw the posting, that's how it came to my attention. We were cheering because for us, that's landmark, as protection for the people we work with and care about. They we're telling us stories of being so scared about going to the hospital and not being able to communicate. Not only did you have that landmark ruling, but you also created this Hospital Visitation Framework document. Could you please speak to what the main criteria are for evaluating if a hospital policy is discriminatory? Let me share with the listeners one quote from the document: “Doctors have an ethical obligation to seek and obtain informed consent from every patient, something that cannot take place, if the patient does not have the tools and supports necessary to become informed, ask questions and make decisions and communicate consent. No visitor policies pose serious barriers to individuals with disabilities who require in person supports.” Could you explain a little bit more about the hospital visitation framework? Tauna Szymanski Sure. Together with the other disability rights organizations that we worked with on this issue, we put together this document, the Hospital Evaluation Framework. It was put together to compile best practices really, to highlight some of the better state policies and hospital policies out there in terms of the detail. One of the things that I never thought I would, a year and a half ago, be looking at were these nitty gritty sort of details like under what circumstances can a support person eat and use the restroom while in the hospital? This is really what a lot of these negotiations come down to is that kind of detail. States still are all over the map with their policies and some states don't even have policies on this issue. And hospitals are all over the map, especially in states that don't have policies. We thought it made sense. I was on a daily basis getting calls on these issues and coaching folks in various states here are the sorts of things that you need to be thinking about. As we were negotiating with OCR and Connecticut about elements that are important to put in these policies, this (framework) was the compilation of a lot of these issues. And we wanted to make it helpful for states and hospitals to adopt comprehensive policies that ensure that patients with disabilities would be able to be supported and have equal access. Part of this document reminds folks of this ethical and legal obligation that healthcare providers have to ensure they're seeking and obtaining informed consent from their patients. So if a patient has a communication disability, they're still entitled to be provided with informed consent. Part of becoming informed is being able to understand what is being presented in terms of treatment options and also being able to ask questions about those options. And then, of course, providing that consent. Much of what we've had to do in terms of advocating on this issue is reminding healthcare providers that you still have to do this, right? Just because that person doesn't have the communication tools right now, you have to provide those (tools) to ensure that they can have that opportunity. And in the case of aphasia, and with Patient GS, a lot of what we were advocating for was reminding (providers) that Patient GS has aphasia and she can understand a lot, but sometimes she needs help with rephrasing. The only person that can really help with that is someone who knows her and knows the background of how she understands and expresses things. And how she can be asked questions in a certain way to ensure that she is answering in a way that is going to lead to an agreement, or decision, or consent. This Evaluation Framework document methodically goes through some of these elements that we found were really essential to have in some of these no visitor policies. Including, is there a requirement in the state policy for a hospital to follow the policy? Some of them suggested it was optional. Or, what kind of facilities does the Framework cover? Does it just include hospitals? Or, does it also include congregate care type facilities, long term care facilities, skilled nursing, etc.? Some were very selective about the types of disabilities that they listed and yet you don't need to have a certain type of disability to qualify under the ADA for an accommodation. So it goes through some of that. What we also thought was helpful would be to footnote each of these with real examples from states, including the language that they've used in their policies, to address each of these points. You can see the variation in how some states have done this. That was, hopefully, a helpful resource. We've used it over time as we've worked in new states to encourage better policy adoption. That’s a really big undertaking. And right before we started our interview, you mentioned that there's been some updates as of yesterday. Do you want to share? Tauna Szymanski Sure. This was specifically about hospitals. The Patient GS situation was really about hospital visitation. And we had been hearing increasingly from folks in nursing homes and institutions, for lack of a better term, and intermediate care facilities, assisted living facilities, skilled nursing facilities, about similar issues about people not being able to go into to visit and then to support. We always start by emphasizing that distinction between a visitor and a disability support person, because in a lot of these facilities, there is actually a legal right to visitation. But more strongly, under disability rights laws, there's this separate and independent right to effective communication and certain disability related support. There was no real guidance about those rights in these other types of settings at the time, and so we, along with several other disability and aging groups, spent a good chunk of last summer pushing CMS, the Centers for Medicare and Medicaid Services, to issue guidance on those rights in those settings. And finally, in September of last year, we got some guidance about nursing home visitation. Then in January of 2021, we got guidance about visitation on intermediate care facilities, and psychiatric residential treatment facilities. Yesterday, just an hour after we presented about the nursing home and ICF visitation, HHS and CMS actually issued an update on the nursing home guidance on visitation and made it stronger, talking about the role of vaccinations and that sort of thing. So essentially, all of these other guidance documents include that additional language about reminding those who run those facilities that that if a patient with a disability requires an outside support person to access the services and healthcare options that are provided in those settings, they're entitled to do so regardless of those no visitor policies. Some of the documentation and legal aspects can be overwhelming for families to navigate. That's why you put in place this COVID-19 Communication Rights Toolkit, which is very accessible. I urge all our listeners to share the link with families which we'll have in the show notes Could you explain what it is? Tauna Szymanski This was put together in March very, very quickly. It tries to simply lay out what those communication rights are in health care settings. Specifically, it includes a section about how you protect those rights and assert them. It includes links to the three different laws, which are the Americans with Disabilities Act, the Section 504 of the Rehabilitation Act, and Section 1557 of the Affordable Care Act. For advocates and lawyers in health care, hospitals, and whatever, they can click on the links to see the actual laws if they want to read them. And then it includes additional resources, like the Evaluation Framework. We included various memos and links to the guidance for state policies that we've compiled on our website. At the very back, there is something that you can actually print out designed to be a form that you present to the hospital when you're being admitted which says: here's my name, here's my emergency contact, here's the support I need to communicate. It could be this person, it could be this AAC device, I need wait time, please be patient, etc. It cites the law and asks people to put this document on my chart and you can keep a (copy of the) document. It’s designed to be used before you need to go to the hospital. We’ve heard that folks are actually doing it that way. Lots of folks have this filled out just in case they have to go to the hospital at some point. We have it translated in both Spanish and Chinese. Maybe one of the tips for introducing this to a family, if a client has an upcoming surgery, is to refer them to this Communication Rights Toolkit, and encourage them to print out the Communication Rights form, right? Do you have any specific stories you want to share about its use at a hospital that's come back to your organization? Tauna Szymanski I haven't heard long detailed stories about its use. But I have seen on many occasions, on Facebook, Twitter and in emails, that folks have brought this information to the hospital and have used it successfully. So that's been very gratifying. I was truly inspired and grateful for the work that your small organization has been able to accomplish during this time when so many families have spoken about feelings of loss and fear about not being able to advocate for their loved one in a situation that is already very, very scary. And it's just been compelling to see the difference that this organization has made. I want to express my appreciation to Bob and to you, Tauna, for what you've accomplished. Thank you so much. And I hope our listeners will look at the links in the show notes to check out the Communication Toolkit and the Hospital Framework. Also, in the show notes, Bob, you showed me yesterday that, as of March 3, you posted a video on the history of communication rights. I only had a chance to start watching it and I can hardly wait to finish it. I urge everybody to check out that video. It is going to be an amazing tool for sharing the importance and value of the history of bringing communication rights to people. Thank you for that. As we wrap this up, when we finally did get to have a tech check after creating a second meeting without the password, we started talking about Springsteen because I saw that noted in your bio, and I couldn't resist. You liking Springsteen makes a lot of sense to me, because at heart, he is really a storyteller. It seems to me, that you too, are very much a storyteller and you understand deeply the value of being able to tell your story. I asked if you had a favorite Springsteen song that you'd like to share? Bob Williams As I told you before, this is the impossible question to answer. I first heard Bruce in 1972. I believe he was the warm up act for Richie Haven. But I was too focused on the redhead college student with me to give him any notice. Soon after, some friends turned me on to the stuff he did on albums, like Greetings from Asbury Park, and The Wild, the Innocent and the E Street Shuffle. So like every old friend, we have been through and continue to go through a lot together. In trying to make sense of this world, each in our own way, trying not to be blinded by the light. And to find some ways to make things more right. So you're telling me there is no one song? Bob Williams No, but here are a few. I love ‘Jungleland’ for its artistry. As the man wails, it is a ballet being fought out in the alley. Clarence’s saxophone solo at the end always takes me places where I crave to be. ‘Racing in the Streets’ also calls out to me. It reminds me of my dad. His work ethic, his drive. The way he lived his life and expected us to do the same. But if I really need my fix from the Boss, I listen to the ‘Ghost of Tom Joad’ and ‘Youngstown’. The injustices Bruce challenges in many of his songs are as real, if not deeper, today than ever. But so are the yearnings they inspire. That is the fix I keep going back for. Of course, I can belt out ‘Thunder Road’ and ‘Rosalita’, just about anything he sings, with the best of them. Absolutely ranks you as a top fan. I agree with you deeply. So thank you for sharing that answer. I want to thank both of you for sharing your expertise today with our Aphasia Access members. I've learned a lot. And I'm hoping that we're able to get the good work that your organization is doing out to a lot more people. So thank you so much. References and Resources CommunicationFIRST COVID-19 Guidance https://communicationfirst.org/covid-19/covid-19-guidance/ https://secureservercdn.net/166.62.108.22/izh.66f.myftpupload.com/wp-content/uploads/2020/10/FINAL-Disability-Org-Guidance-on-COVID-19-Hospital-Visitation-Policies-updated-100720.pdf Americans with Disabilities Act featuring Bob Williams https://www.youtube.com/watch?v=fLg533x8vKE&feature=youtu.be CommunicationFIRST Covid-19 Communication Rights Toolkit https://communicationfirst.org/covid-19/

Episode #66: Avatars and Shout Outs and Mentors, Oh My! Leadership Summit Preview with Gayle DeDe

Dentistry Uncensored with Howard Farran

Play Episode Listen Later Mar 9, 2021 24:33

During this episode, Jerry Hoepner, a faculty member in the department of Communication Sciences and Disorders at the University of Wisconsin – Eau Claire, has a conversation with Dr. Gayle DeDe about the upcoming Aphasia Access Leadership Summit. Take aways: Get to know the back story about Gayle’s LPAA mentors. Learn how the planning committee strategically distributed the schedule to reduce Zoom fatigue and to retain as much of the close knit, reunion feel that past Summit attendees love as possible. Hear a sneak peek about the Gathertown app, which will be used in our social get togethers at the summit. Make your own avatar (MYOA). Shout out to members of the planning committee! Multiple opportunities to learn about telepractice. New to this year’s summit! Accepted oral talks. Hear about the great lineup of invited speakers. Check out the Aphasia Access Facebook page and Twitter feed! Interview transcript: Jerry Hoepner: Hi Gayle, nice to see you today. Gayle DeDe: Thank you, nice to see you too. Jerry: Long time, no talk. It's been at least two days. Well, I’m really excited to have a conversation with you about the upcoming Leadership Summit and kind of what we can expect when it comes to the summit. Before we jump into that conversation, can we start out just with a kind of a traditional question of mine just asking about your influences and your mentors in the life participation approach. Gayle: Sure. It's hard because there's just too many people to name them all. I have been raised academically and clinically by a village. In the traditional sense, so I would say that the first sort of really important mentorship that wasn't exactly about the life participation approach, but is related, I think. It was my undergraduate thesis mentors, so this is going back many, many years when I was in psychology and linguistics and I was very interested in those topics and I was doing a thesis with someone who is in the department of communication sciences and disorders, at my university. And as part of that I was able to go and observe treatment sessions, with one of my mentors, who was a speech pathologist and I had this epiphany, lightbulb moment; that this work that I really enjoyed That was really interesting to me from a theoretical perspective could have an influence on real life people and that that was what I wanted, but it wasn't enough to be purely theoretical that I wanted to be able to take what I was doing and apply it to people. Jerry: That's a great epiphany and definitely a life participation moment for sure. Gayle: um and then my PhD mentors are both, you know, strongly rooted in the cycle in mystic domain Gloria Waters and David Kaplan but also were really good about thinking clinically and thinking about relationships between theory and practice, and so I think that also had a really significant impact on me and how I think about clinic in general um and then. Liz Hoover actually hired me for my clinical fellowship is an exciting side note, but she when she came to Boston University. They started the official resource center when I was still in graduate school at BU, and so I was able to run some groups in that context and have my first real experiences with aphasia groups run within a life participation approach. And that was very impactful I ended up sort of stepping back from that to do more psycholinguistically oriented research for several years. At the University of Arizona, while I was there, I got to be pretty good friends with Audrey Holland, who is a professor emeritus at University of Arizona, and she helped me in a million different ways and mentored me in a million different ways. But one of those was when I was trying to think about where I really wanted to go with my career trying to decide if I was in the kind of position I wanted for the long term. She was really encouraging and help me think through what it was, I really wanted and without that I don't know that I would have been able to have been in the mental space to make the move from University of Arizona to Temple where I'm able to be the director of an Aphasia Center. And then the last group, I would mention is just the members of the Aphasia Community at Temple have had an enormous impact on my life as a researcher as a clinician and just as a human. Jerry: Yeah, what a what a great bridge from that theoretical background too strong applications with Audrey and Liz's guidance. And I 100% agree and I've heard so many aphasiologists talk about this that the people within our groups are our best teachers and really. I just continue to learn every day when I interact with my group members as well, so that's really that's really outstanding and valuable so appreciate that. Um, so thinking about that you know as you talked about what you wanted to do, how has the LPAA framework kind of influenced your research you're teaching your clinical work? I know that's a big question. Gayle: Indeed, yes, so in making the transition for me part of what I wanted was to be able to do clinic for clinics sake. In the kind of track I was on previously it would have it felt like it would be difficult for me to do clinic outside of a research setting and I wanted to be able to tailor clinic to the people I was working with and you know, with groups, even though you're in a group setting like we add groups, depending on what our group members expressed interest in, so I felt like I could actually do that in the setting I'm in now um and then just More generally, I have found that when I'm thinking about clinic I start at the end. When I'm talking with students, the question is always you know where does this person want to get to themselves and what can we do, based on what we know of the evidence to help them get there, how are we going to implement treatment protocols to get them to where they want to be, or as close to their as where they want to be as we can. Jerry: Outstanding I believe another very fine aphasiologist once said, begin with the end in mind, Aura Kagan has had that influence on all of us so. Gayle: Yes indeed, and then from Audrey, I think that trying to focus on what people with aphasia can do not just on what they can't do, focusing on strengths rather than weaknesses. Jerry: Yeah, what terrific guidance and a terrific way to spring off into our conversation about the aphasia access leadership summit coming up pretty soon in April; nice to see it coming to fruition for sure. Gayle: Wow, I'm very excited. Jerry: Gayle, I know you in the planning committee have done a lot of planning to make this virtual event feel like a get together, so it feels as close knit and interactive as possible. So, many past summit attendees see the summit as the kin to a family reunion type of feeling right about the steps the team has taken to retain that feeling. Gayle: Sure, first of all I want to point out that you are part of this team. You and I are the co-chairs of the summit. So, we have done a lot to try to think about how to keep a more community-based feeling with the summit, so one thing is that we've planned synchronous talks where there's opportunities to ask questions online, but also if people aren't able to attend the synchronous top. They can watch some of the talks after the fact, and then communicate by discussion board so there's still the opportunity to interact and then we've planned purposefully to have some time for unstructured informal conversation so we're using a platform called Gathertown, which essentially is like a little like a big Zoom room, with little separate areas in it and you can enter into the gather town space, then you can see who is around, and you can have a little avatar that you can move to join conversations with people you know and to join different conversations to see your friends and be able to catch up so it's not you know it's better than live cocktail party and that there's not so much background noise. But there's still that feel of you can see someone across the room who you haven't seen for a long time and go say hi to them. So, that's pretty exciting, so we have a BYOB cocktail party scheduled for Thursday night and then we'll also be using Gathertown during the day on Friday and then also at the end of the day, on Saturday so as people are on their way out, they can chat with their friends and make new friends. Jerry: Terrific so with my little avatar I could walk over to Audrey Holland and have a conversation about her mentoring, have you those kinds of things that'd be fabulous. I like the idea, you know of having walking around in this little blue avatar, right? just like the movie. Gayle: Just like it. Jerry: Just kidding. Um, terrific so that sounds like we've put a lot of thought into just achieving that kind of close-knit feel and trying not to get overwhelmed with all of the zoom time and creative ways to make that happen. Gayle: yeah. Jerry: Terrific! Hey, you know, before we jump any further how about we just give a big shout out to our planning committee for all of the time that they spent contributing ideas to that you know developing an online conference that really does facilitate that close knit feel and for all their work reviewing a lot of proposals so who should we shout out to. Gayle: And so, in alphabetical order and we had Jamie Azios, Mary Beth Clark, Will Evans, Katarina Haley, Trish Hambridge, Nidhi Mahendra, Maria Munoz, Catherine Off, Andrea Ruelling, and Debbie Yones were all on our committee and gave really fantastic feedback from lots of different perspectives. Jerry: Absolutely, maybe a virtual round of applause, here we don't want to anyone's ear drums on the podcast but yeah, thank them so much for the work that contributed for sure. Alright, so we know that sitting in chairs and staring at a screen all day long can really get to be exhausting. I think we've all pretty much learned that lesson, this year, if nothing else. So, what kinds of things, specifically, have you done to break up the schedule, so that attendees stay connected and kind of reduce that zoom fatigue. Gayle: Yeah, so we did a couple different things, first of all, we spread out talks across the week, so the way the conference is structured they'll be for a full week. Monday, Tuesday, Wednesday, Thursday there'll be talks from 12:00 pm to 1:15 pm (CST) every day those will be synchronous so attendees can watch them live (Note all times are Central time zone). And if that doesn't work with your schedule, you can watch it later and then like I said communicate with the speakers using discussion boards. For Friday and Saturday, we tried to keep the days relatively short, and we also built in some different like what we call mind and body breaks so, for example, Aimee Dietz’s group will be talking about yoga with people who have aphasia with her team and part of that will involve some demonstrations of aphasia friendly yoga So hopefully our attendees can get up and get moving a little. Jerry: Absolutely and nice to kind of get that midway stretch and still be learning, while we're stretching so that'll be really great. Gayle: Sure, so, in addition to the body and mind break Will Evans and his group will be talking about aphasia games for health which is a prototype for using games for people with aphasia feature friendly games so that's another way that we're going to be able to have sort of a less research heavy talk where you're still learning but it's you know a little calmer, maybe. Jerry: Sounds like fun, right? Gayle: Yes. Jerry: Well, obviously we wouldn't be having this conversation, the same way we're having it right now, if it weren't for COVID, right? Our world changed with the onset of COVID and there's a rapid shift to the virtual telerehab format. Can you share a little bit about who our invited are and how they're going to address those current issues? Gayle: Yeah, we have a couple of different ways, so, first of all, on Tuesday we're having a panel on telepractice for people with aphasia and what I'm particularly excited about there is that we have people who have been doing telepractice for quite a long time, like Judy Walker along with people who are relatively new to using telepractice, and then we also have two people with aphasia who will be on the panel as stakeholders to talk about their experiences of telepractice. Jerry: That's going to be terrific. Gayle: Yeah, and then another way that we're addressing this is by inviting Jane Marshall who's going to be talking about Eva Park for people who don't know Eva Park is a virtual world that was designed for people with aphasia in order to practice functional communication, you can hold groups there. It's a really interesting space and they've been working on Eva park for a very long time, so they've done a lot of work around how to work with people with aphasia in a virtual space so I'm also really excited to hear about that, and then we also have several poster sessions about the transition to tell a practice, including some about transitioning music groups which I am super excited about. Jerry: Agreed, sounds terrific well speaking of invited speakers how about a little bit of a at least a taste or an overview of what those invited speakers will discuss. Gayle: Yeah, so I mentioned a couple of them already and we also have Charles Ellis who's going to be talking about health care outcomes and health care disparities for people with aphasia which I'm really excited about. And then we're also having what we were informally calling the master class on aphasia groups. It's a panel conversation with people who are really just experts in running conversation groups, and they are going to be talking about various aspects of how groups are put together how you run them what kinds of things you're thinking about during group. And we sat in on some of the earliest planning meetings and I learned so much during just the planning meetings I'm ecstatic to hear what they have come up with in the time since so that's really exciting. Jerry: Agreed, and like you said they're reluctant to call themselves master clinicians but this is a unique opportunity to look over their shoulder. We get to see how they think, and why they do what they do so I agree it's going to be very exciting. Gayle: Yeah, and just thinking about you know the there's such a range and how we all implement groups it'll be really interesting to hear how different masters clinicians implement different concepts and I'm just I'm very excited. Then another really exciting thing on Saturday is we're going to have Karen Sage talking about therapeutic alliance with people who have aphasia and then, following on the tales of that Katarina Haley will be talking about collaborative goal setting for people with aphasia so really focusing on how we can work together with people who have aphasia to maximize treatment outcomes. Jerry: Absolutely, that's going to be just a terrific pairing of those two ago so well together outstanding. Right? Well, this is the first year that we will have accepted proposals really exceptional proposals as oral presentations. Can you tell us a little bit about the accepted oral presentations? Gayle: Sure, so we have three accepted talks I should mention here that we had many, many more submissions for oral talks than we could possibly accommodate so we had to say no to a lot of really fantastic talks. Jerry: There were several and all of them were really terrific so. Gayle: Yeah, it was we had to make some painful choices. And so, the three talks that we have were universally acclaimed by the reviewers and also have. A lot of relevance for both research and clinical perspectives so Marion Leaman and Brent Archer are going to be talking about empowering people with aphasia to initiate topics of conversation. There will also be a talk by Jamie Azios, Jamie Lee, and Roberta Elman about running virtual book groups and how to encourage engagement in virtual book groups. And then finally Jackie Hinckley and Janet Patterson are going to be presenting results of a study, where people with aphasia were randomly assigned to receive impairment or activity focused treatments and presenting results, about which type of treatment seem to have the best effects. Well, I'm really excited for all of those talks. Jerry: Absolutely, that's super exciting. All right, well Okay, you know that's right, we had a lot of proposals, this year, can you talk a little bit about the different formats and how we try to make them as interactive as possible. Gayle: Yeah, absolutely so I mentioned a little bit already about the invited talks and the accepted talks so that will be one format. And they're also going to be Brag n’ Steals as is the tradition for the summit and those will all be synchronous live. And then we're also having just one poster session and we're going to be obviously virtual poster sessions are very different from live poster sessions. So, we are developing a format, where each poster will be in its own Zoom room and attendees can basically drop in on the different Zoom rooms that they're interested in and hear you know talk with. The author or authors about the contents of the poster they can have a run through like you would typically have and then our plan is also to make the poster overall the big poster accessible in a PDF format. For attendees so you can sort of get the big picture, but you can also go into the Zoom room and talk with the authors so we're trying to keep that interactivity that is so great about poster sessions and again like with Gathertown, with the added benefit of less background noise, which is something I always think of as a speech pathologist when I'm in a poster session, then we should loop all of our posters to. Jerry: agree, no big poster hall with people shouting next you and so no vocal trauma or less trauma. And we're putting together some guidelines that will send out to people who are presenting posters, so that they have a clear idea of what that will look like and how to kind of maximize the way that they deliver that so yeah excellent okay. So, it's sort of a tradition that Audrey Holland, at the end of the conference wraps things up provide some takeaways and a conclusion at the end of the summit that's still going to happen this year. Gayle: It is and I'm very excited. Yes, I'm really excited to hear from Audrey I think it's always great to hear what she's taken away from the conference so I'm excited to hear that again. Jerry: Excellent, and I assume we'll be having awards for the Audrey Holland award and the Innovator award and those types of things that will happen sometime during the conference as well. Gayle: Yes, that will be happening Friday afternoon at the end of the day, on Friday and I'm actually also really excited to announce that we will be having a new award, which is for outstanding student presentation. Jerry: Outstanding! I'm really excited about that, you know I love student learning so terrific well that's just sounds like a terrific opportunity to reengage with all of our life participation colleagues and hopefully, retain as much of that close knit reunion feel as we can. Anything else out there that we should know about, as we look forward to the summit? Gayle: Just that I'm really excited for it, and I hope lots of people will register and will really take advantage of all the different ways to interact. Jerry: Agreed. So excited for that and I’m sure we'll have a busy few weeks leading up to the summit so I will definitely see you again soon. Okay, well, thank you Gayle for joining us and really appreciate the conversation. Gayle: Thanks for having me. Jerry: Absolutely, on behalf of Aphasia Access we want to thank you for listening to this episode of the Aphasia Access Conversations Podcast. For more information on Aphasia Access and for access to our growing library of materials go to www.aphasiaaccess.org if you have an idea for a future podcast series or a topic email us at info@aphasiaaccess.org. Thanks again for your ongoing support of Aphasia Access.

1556 Mitch Tuchman of Rebalance on Key Mistakes to Avoid When Investing : Dentistry Uncensored with Howard Farran

Play Episode Listen Later Feb 4, 2021 67:44

Mitch Tuchman spent this first half of his career as a Silicon Valley software entrepreneur. He then entered investment management with Apex Capital, LLC where he oversaw a $200 million technology portfolio. He founded the first robo-investment firm, MarketRiders, in 2008. By 2012, Tuchman noted that robo-investing needed a “human touch” and he partnered with Scott Puritz to form Rebalance. They recruited an all-star Investment Committee with Princeton Economics Professor Burton Malkiel, author of the classic investment book, A Random Walk Down Wall Street; Dr. Charles Ellis, the former longtime chairman of the Yale University Endowment; and Jay Vivian, the former Managing Director of IBM’s $100+ billion retirement investment funds. Join the community on Dentaltown at https://www.dentaltown.com

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