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Episode #85: Navigating the "Slow Road to Better": A Conversation with Melissa Richman and the Podcast Team from the Stroke Comeback Center
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For today’s episode, Ellen Bernstein-Ellis, Program Specialist and Past Director for the Aphasia Treatment Program in the Department of Speech, Language and Hearing Sciences at Cal State East Bay, speaks with Melissa Richmond and members of the Slow Road To Better (SRTB) podcast group from the Stroke Comeback Center (SCC). This show celebrates Aphasia Awareness Month and is honored to feature 5 individuals with aphasia who are consumer advocates through their work on the Slow Road to Better podcast.
Guests:
Melissa Sigwart Richman, MS, CCC-SLP is a speech-language pathologist with 30 years of experience working in rehabilitation with stroke and brain trauma survivors. She holds degrees from James Madison University and the University of Maryland, College Park. Her career has included inpatient and outpatient rehabilitation, long-term care, home care, community-based and virtual settings. Melissa served as a Senior SLP on the inpatient Stroke Recovery Team for Medstar National Rehabilitation Hospital for over ten years and in 2006 became the Program Director for the Stroke Comeback Center in Vienna, Virginia. During her tenure, the organization grew to three locations starting with a handful of groups to well over 50 classes per week utilizing a life participation approach. In 2019, Melissa moved to the Outer Banks of North Carolina and started the Virtual Stroke Comeback Center which has continued to grow and thrive. She continues to focus her energy on improving the lives of survivors and families living with aphasia, with the primary focus of helping them get back to the business of living.
Slow Road to Better Podcast Team Members:
Kitti Tong: At the age of 27, Kitti Tong earned the CEO’s Exceptional Performance Award at Choice Hotels – the highest recognition in the company. A data analyst, growth strategist, and event facilitator, she founded a Toastmasters Chapter in Maryland and co-chaired several committees for women’s leadership and human rights. Kitti’s life was changed forever when she was struck by a car walking home from work, sustaining a severe traumatic brain injury. With determination and grit, she relearned to walk, talk and participate in life. She has founded S.A.Y. Younger Aphasia on YouTube to help create awareness of this isolating condition.
Kitti's YouTube channel is: S.A.Y -- Younger Aphasia Group - YouTube
Pat Horan: My name is Pat Horan, I was a Captain in the Army. In 2007 I was wounded in combat serving in Iraq. After my injury I couldn't talk, read or write. Over the past 10 years the Stroke Comeback Center has helped me improve my writing, reading and speech more than I could have ever thought possible. Today I am a proud father of a new son and an adopted nephew. My continued recovery will help me be a better father and husband.
Erin Adelekum: Erin's Instagram is: stroke.mama
Chris Vincent
Dante Thomas
Listener Take-aways
In today’s episode you will:
- Learn how interprofessional education with physical therapists led to the launch of this member-focused aphasia podcast.
- Find out how the members prepare for the podcast by embracing spontaneous conversation
- Listen to members share insights on the benefits of being part of the SRTB podcast
- Hear the podcast team share the insight that even though aphasia is not “leaving it, but we’d like to crush it a little bit.” Crush it, they do!
Edited show notes
Ellen Bernstein-Ellis 00:54
Welcome to the Aphasia Access Aphasia Conversations Podcast. I'm Ellen Bernstein Ellis, Program Specialist with the Aphasia Treatment Program at Cal State East Bay in the Department of Speech, Language and Hearing Sciences and a member of the Aphasia access podcast Working Group. Aphasia Access strives to provide members with information, inspiration, and ideas that support their aphasia care through a variety of educational materials and resources.
In recognition of June being Aphasia Awareness Month, I'm excited and honored to be today's host for an episode that features the five members of the podcast team from the Stroke Comeback Center located in Vienna, Virginia. They are joining me today along with Melissa Richmond, the speech pathologist who produces the show. The Slow Road to Better has launched over 100 episodes that offer authentic and engaging discussions about how to adapt and live well following brain injury or stroke. They share what keeps them all on the “slow road to better”.
Welcome everybody! And I'm going to start with Melissa's introduction. And then I'll ask the podcast members to introduce themselves.
Ellen Bernstein-Ellis 03:21
Melissa, thanks for joining us today. And now I want to get the rest of this show on the road. But in this case, it's actually The Slow Road to Better. I want to have the team introduce themselves. I'm excited to have the podcast team here today. I was wondering who wants to jump in first with the introduction? Because we got five of you. Any volunteers? So Chris, let's start with you. And could you share with our listeners, what was the cause of your aphasia?
Chris 03:48
So I was on the motorcycle on the way to a fire meeting. And some guy didn't see me and ran into me.
Ellen Bernstein-Ellis 03:58
So traumatic brain injury.
Chris 04:01
Yeah, absolutely. So 10 years, and I only said, “yes”, “no” and four or five curse words, which is important for firefighter, and military and everything. And then obviously I am talking, walking everything.
Ellen Bernstein-Ellis 04:19
Thank you, Chris. And how old were you when you had this brain injury?
Chris
Twenty seven
Ellen Bernstein-Ellis
And how long have you been living with aphasia? How long ago was that?
Chris
10 years.
Ellen Bernstein-Ellis 04:31
10 years? Okay, and Chris, one more question. How long have you been a podcast team member?
Chris 04:36
Since the beginning? So six, seven years?
Ellen Bernstein-Ellis 04:40
Six or seven years? I saw Melissa holding up six too, so 6-7 years. All right. So you’re an original team member?
Chris 04:47
That's correct.
Ellen Bernstein-Ellis 04:48
That is fantastic. Okay, and who goes next? Kitti, are you calling out somebody? Oh, Kitti is volunteering.
Kitti 04:56
Kitti, I’m Kitti and three years ago I was hit by the car. But Chris and I, and I was 27. Yeah. And
Ellen Bernstein-Ellis 05:10
That was three years ago. And how long have you been the podcast team member, Kitti?
Kitti 05:15
Two years, two years and now.
Ellen Bernstein-Ellis 05:18
Okay. All right. Well, thank you for starting off. And do you want to call somebody next for me?
Kitti 05:27
Oh, wait, wait, wait.
Ellen Bernstein-Ellis
What else?
Kitti
Yeah. I was silent. But now I'm better. Okay. Let’s call Pat.
Ellen Bernstein-Ellis 05:32
Thank you, Kitti, Pat, what was the cause of your brain injury? You've shared that with us that you're a veteran.
Pat 05:42
Yep. I'm Pat Horan. I got hurt when I was in Iraq. I had been there for a year and for no good reason, I got a shot in the head. And that was 15 years ago.
Ellen Bernstein-Ellis 05:56
And how long have you been a podcast member?
Pat 05:58
I think I’ve been doing it the whole time also.
Ellen Bernstein-Ellis 06:00
So two original members, right? Kitti is a new kid on the block, I guess for podcasting. Okay, Pat, thank you so much. And I see Erin waving her hand. So you are next. Erin. Welcome. And what's the cause of your aphasia? How did that happen?
Erin 06:19
So, I'm Erin. And IG (Instagram) knows me as strokemama.mama. I was 39 When I gave birth to my daughter. And nine days later, I had a stroke.
Ellen Bernstein-Ellis 06:37
How long ago was that again?
Erin
Ellen Bernstein-Ellis
Okay, so you have a two year old.
Erin 06:42
One and a half. She turns two in July.
Ellen Bernstein-Ellis 06:46
Beautiful. Okay. And Erin, how long have you been part of the podcast team?
Erin 06:50
I'm going to come on my year in, maybe, October or August? Or September?
Ellen Bernstein-Ellis 07:01
All right, close enough. Close enough. So you're kind of new like Kitti. Okay, thank you so much. Thank you, Erin. And last, but certainly not least, is Dante then. So Dante? What was the cause of your aphasia? Can you share that with our listeners?
Dante 07:17
It's a long time, but I got my pills and stroke. And about five years and I'm improving and words and is really good. So yeah.
Ellen Bernstein-Ellis 07:33
Thank you for sharing that. And how long have you been a member of this podcast team? Oh, one
Dante 07:40
Oh, one year.
Ellen Bernstein-Ellis 07:41
About one year? Okay.
Well, I want to thank all of you. I am honored to be here. I am a huge fan. I have been listening to your episodes. And I am just so impressed. I'm just so impressed with what you've accomplished. And we want to talk about that today. Before we jump into your experience, I'm going to circle back to Melissa, just for a minute. And Melissa would you share with our listeners? What inspired you to do this? How did this happen?
Melissa 08:09
We were actually inspired by a physical therapy student. I was asked to give a lecture at Marymount University to help the physical therapy students understand what speech pathology was and what their role is, as part of a rehab team. And I brought some members from the Stroke Comeback Center with me to tell their story about living with aphasia. The person, his name was Jimmy McVeigh, said I think you all should do a podcast. And he had podcasting and radio in his background. And he said, I will help you, which he did for a few months. And we first had our podcast out on his feed, which was called the PT podcast. Then, you know what happens with students. They graduate and get jobs and real lives. So he didn't really have the ability to help us anymore. And so the members really enjoyed the podcast and wanted to keep it going. So we just picked up where we were, and use what we had, and started our own feed with the help of some friends. And so in 2017, I guess we officially kicked off The Slow Road to Better on our own RSS feed.
Ellen Bernstein-Ellis 09:39
Wow, you kind of just rolled up your sleeves and did it, I think.
Melissa 09:43
We did. I always tell people, like file it under things they did not teach me in grad school. Okay,
Ellen Bernstein-Ellis 09:50
Okay, share with our listeners who might be thinking “maybe we can do this too” what do you do to set up an episode?
Melissa 09:58
Really, what I do is support a conversation among members of The Stroke Comeback Center. The way that I see it, my job is to manage the logistics. We record on Zoom. I get us all together. And most of our conversations are really just authentic conversations-- things that come up with the members who are really doing their best to live well with aphasia.
Ellen Bernstein-Ellis 10:30
I was just going to ask what really makes a good show topic. I think that's what you're kind of referring to here.
Melissa 10:36
Yeah, authentic conversations feel like stuff. And some of it is serious. Some of it is people dealing with loss of independence, or they feel like their relationships are different, power is different, financial issues. And sometimes it's, I really want to wear my cute shoes and I have this stupid brace. Or, oh my gosh, I'm trying to wear my contacts and I have to put them in with my weak hand. We had a long conversation about how do I shave my armpit on my weak side? You know, so?
Ellen Bernstein-Ellis 11:12
Wow, the real stuff or Yeah, stuff.
Melissa 11:14
The stuff that friends talk about when they get together? Those make the best conversations. We don't plan. We don't fret. I don't give out the questions. I pretty much turn it over to the members, and they take control.
Ellen Bernstein-Ellis 11:29
Sometimes you have guests and the podcast team asks questions. I listened to the episode this week with a physical therapist, and that was fabulous. Hearing people share their questions about their experiences and, and really very empowering. I mean, just being in charge of your own life and your own rehab. That's, that was my takeaway.
Can I ask who is a good candidate to be a podcast team member? What are your thoughts about that?
Melissa 11:56
From my perspective, any survivor with aphasia, who is willing to put out their honest, authentic self---the good, the bad, and the ugly, I don't think it's fair for podcasters to come out and say all the good stuff like I'm doing so great. Even though I had a stroke, life is great. It's not. There are a lot of days that really suck. And there are a lot of days where we shed some tears during this podcast, and we've had a lot of failure. I think it takes a lot of courage and a lot of grit to be willing to come on to this podcast and put your true self out there that I really wanted this, but it was a fail.
Ellen Bernstein-Ellis 12:45
I'm just gonna say that that honesty, that grit, that resilience has shined through every episode I've listened to so far. That's why I become such a big fan.
And one more question, Melissa, then let's open it up to the whole team. And that is, what benefits have you seen for the members from being part of this podcast? What are the benefits of this podcast? I'm going to be asking the members that in a moment.
Melissa 13:11
I think some of the best outcomes have been the survivors being able to share their story with other survivors. Being able to give back to a community. Being willing to put themselves out there and say, “If I can do it, you can do it.” Building a bridge of hope. Which is what we say in our intro, and that's really what our members want. I think they understand that not everybody has a Stroke Comeback Center. And I think they understand what this center and the impact of having friends with aphasia has done for them. And they want to do that for someone else. So I think that's probably the biggest outcome.
And really, it's a great way for the members to track their communication progress. And I say it all the time. Go back to when you started listening, and listen to your communication. And then listen now. Because when I edit, which is really what I would say is my most significant role is, I am the editor and the uploader of all podcasts, is that it's a record of their progress. And it's amazing. It's really a way for our listeners to go “Well they sound great now, you know, they clearly didn't have that much aphasia.” Go back and listen six years ago and see what it sounds like, because I don't try to make people sound like they don't have aphasia. What would be the point of that?
Ellen Bernstein-Ellis 14:54
You just mentioned your opener, and the first time I heard the show, I was completely reeled in by that opener. It just hooked me because, first of all, it starts with someone saying, “Come in, come on in, come on in.” And that's exactly right. You are welcoming people into your lives with aphasia, and you're saying, “I'm here. And I'm going to share.” I mean, that was just so empowering. I'm going to play that clip. It’s engaging. It's collaborative. Right away that that opening captures everything. So let me play it for the listeners. And then we'll come back again.
OPENING ROLL OF SLTB PODCAST PLAYS
Ellen Bernstein-Ellis 16:40
I hope the listeners enjoyed that clip as much as I have. I just want to say it's fabulous, every part, every line, but maybe I have a favorite piece. And that's when Pat* says something like, you know, aphasia isn't going to go away. But we want to crush it. And I think that's what happens with every episode, that determination, just to crush it. (Note: original recording says “Chris” instead of “Pat”, but the correction is noted later in the recording.)
So with that, let me throw out a question to this fabulous team. And that is what do you all think is one public benefit? What do you think listeners can take away from this? And what's a personal benefit of the show? So if you could just to speak to either a public benefit or a personal benefit that you you have experienced? Do I have a volunteer? Is Kitti going to call on somebody for us?
Erin 17:37
It’s Erin. I think the public benefit is seeing how funny, or sarcastic, or you know, kind, or the troubles that aphasia survivors go through and realizing that they are just as funny, or even more funny, than when they didn't have aphasia. And then I think the personal benefit is having a group that I think, the personal benefit for me is having a group of aphasia people to talk with. And I know that I am so much better, you know, the aphasia is so much better than when I first started the podcast.
Ellen Bernstein-Ellis 18:43
That's beautiful. So it's really the sense of camaraderie. And it's also the sense of sharing with others. You're not alone, just normalizing this whole thing. Erin, thank you, and who else wants to share any response to this first question? I see Kitti raising your hand.
Kitti 19:03
Hi, I’m Kitti. In my podcast, I'm full funny, half philosophy, I'm half joking, I'm half serious. And now, before I was still me, and now I'm still me. Just mindset you know, just mindset.
Ellen Bernstein-Ellis 19:24
So being yourself is part of the maybe public benefit because you can let people see who you are. You're a person you're still you. What's been a personal benefit for you Kitti?
Kitti 19:35
I'm still me like before and after I'm still me, you know what? Change, I have aphasia but I am still me. Before I was speaking convention. Now, I am still convention. You know?
Pat 19:51
I think it's really, like
Ellen Bernstein-Ellis
Is this Pat?
Pat
Oh, sorry, I am Pat. Yeah. I was also Pat, the one that said--I'm sorry, I'm thinking right now, I shouldn't think—It wasn't Chris that said it. I said I was the one who said, “I'm the one, I would crush.”
Ellen Bernstein-Ellis 20:09
Oh, I got that wrong.
Pat 20:11
Yeah, even you it happens to you.
Ellen Bernstein-Ellis 20:14
Absolutely, oh heaven’s, yes. So Pat, thank you for that. So we'll put the tribute where tribute’s due. Sorry, Chris. I'm gonna toss that one over to Pat. So Pat, what's your,
Pat 20:23
I just think it's like, like Kitti was saying, like how she's doing the YouTube and stuff. But like, she went last year--I think, she went down--she went to Vegas to go talk with some other people, you know. And I've been, you know because I got hurt so many years ago, but I've got to go to other colleges around here. I used to have a working dog and I, (unclear) dog, they asked me a couple times to go and we'd go and talk to--I can't remember where we went, somewhere in Maryland. And there was like, over two or three thousand people there that I had to talk with about my dog, Wilson. And it was funny because Wilson was perfect. Like one time, it was really great. We went to, Chris what was that name of that college we went to? Marymount….
Erin 21:22
Chris and you… went to Marymount?
Pat 21:24
So we were there, was that for PT maybe? And we did—that, that was, sorry Chris, her name was Kim. And then me. I don’t know, there's a bunch of students there. And Melissa was there, but she told us that we weren't allowed to talk, or she wasn't gonna talk, no matter what.
Ellen Bernstein-Ellis 21:49
Oh, so it was all on you guys. So Pat, are you telling me that part of the benefit from this podcast is that you've really gained kind of the confidence to go out into public and share these messages? Do you think that's been one of the benefits of working on this podcast? Or are you just saying that it’s a sense of advocacy that you've really become even a stronger advocate?
Pat 22:11
So that's the problem for me is, I don't know big words.
Ellen Bernstein-Ellis 22:15
Absolutely. So you stand up for yourself, you're empowered. Pat, I think you're very empowered.
Pat 22:21
Or, just like the movie, I'm just “living the dream”, you know. (laughter) I want to go out and have fun. I want to enjoy—I don’t want to get into this whole thing with me, but I'm excited that I lived, you know. And so I'm just, like to get out there, you know, when I can talk with people and talk and stuff. And I'm not perfect. I'm not, I'm not the king of the world. I'm not the best, but I just want to help other people. That's what we started years ago.
Ellen Bernstein-Ellis 22:47
So that's one of your motivations, then. You're just here to help others too, so a real sense of altruism, and just having that role of a mentor and a helper. That's great. Thank you.
Dante or Chris, do you want to jump in on this question at all? What's the public benefit or a personal benefit of this podcast?
Dante 23:09
Dante. The beginning talk, and very little, but then more and more. Sentences and just driving and more and more and more. Like, the mall and talk, and just nothing, and I gain and more and more. So yeah, it's definitely improving. And just more and more and more and group and, and yeah, just flew in and just really talk, and is leaps and bounds and expressing and laughing and….
Ellen Bernstein-Ellis
That's beautiful, Dante.
Dante
Definitely not sound it out, but just expression and reading and on YouTube. Just more and more and more expressive. Just talk and let me know, and it's definitely getting much better.
Ellen Bernstein-Ellis 24:12
And that's an important message for listeners to hear. I think that people continue getting better. There is just a better. I think that's so important. In your last episode, you guys talked about that whole, I call it the “P word”. When people are told there's a plateau, is the “P word”. You know when you. are told that you're gonna get better for six months and stop. And you guys kind of blow that through the roof and say, “No, we keep getting better year after year, because we're working at it.” So, Chris, is there something you want to add to this part of the discussion about a public benefit or a personal benefit of the show?
Chris 24:52
Yeah, I mean, so in the world, you have aphasia or TBI. And a lot of people don't have what we have. It kinda--Melissa shows us what the USA and then all over the world. I mean, there's a lot of people that have aphasia or not, and just listening and..
Ellen Bernstein-Ellis 25:28
Right, your show has had over 50,000 downloads. And we know there are over 2 million people with Aphasia just in the US, and that doesn't
even touch the rest of the world. So, Chris, you're saying it gets the message out there. And as Melissa said earlier, there's not --not everybody has access to an aphasia center like you guys all have. Access to your fabulous Stroke Comeback Center. So thank you, Chris, way to kick this off-- your discussion.
And I was wondering if you'd be willing to share any important lessons with the listeners about your podcast experience? You know, what, what type of insights or good lessons or hard lessons have you had with being a podcaster? Your humor is definitely been a good lesson for me, you guys can just let it roll. And that's a part of the magic, I think, is the humor you share with each other. And you call each other out? That's for sure.
Chris 26:22
Yeah. laughing And then there's some days that are not happy. It's sad. And it's just… and I think there's laughable moment on each episode. Some are very touchy. But you know, I think that is podcast. And that's what the benefit of listeners. We are not happy all the time.
Ellen Bernstein-Ellis 27:03
Yeah, that's very real. And it sounds like this is really storytelling. It's sharing your life. It's the lived experience here. And that's what you're bringing to the listeners. Any other important lessons that you guys can share with us? Kitti?
Kitti 27:19
Hi, I'm Kitti. For someone say that I was crying, or I was joking, or I just didn't make sense. And I said, “Do you know what I mean?” And then Melissa said, “I don't (know) what I mean. (Laughter) You know, just okay. One second. Okay. I'm feeling like that we are podcast. Feel like that, what is aphasia? What is different? And what is my benefit? Not me. Not Chris. Not Dante. Not Ellen. Not Pat. But what is most me? Do you know what I mean?
Ellen Bernstein-Ellis
Help me with this.
Melissa 28:09
This is where I have to say no, I don’t know what you mean.
Pat 28:12
I think this is what you might say, Kitti, just let, if I'm totally wrong, you tell me. But like when you go to see any PT, OT, or speech or whatever. And I've had some of these people that are for speech, were like, you know, this and that, you got to do this. And then, just like, but wait, you're doing the same thing with all the, what the people that have a, you know, a stroke or a TBI. And you're like, wait, you can't tell everybody the same? We're all different people, all of us, you know. So? Is that what you're trying to tell Kitti at all? Or am I totally wrong?
Kitti
Yes.
Ellen Bernstein-Ellis 28:54
And nice job, Pat. And Kitti. Are you also saying that sometimes because it's not about any one story or any one person, but it's the bigger piece of everybody helping each other that you…
Kitti 29:13
Yeah, like we are human. The normal people is human. We are human. We are both human, not like disability, but different ability, you know?
in-Ellis 29:26
So each of you are telling your story in your own way.
Any other important lessons that you would want the listeners to understand about this podcast experience? And if not, I have other questions, not to worry, I don't run out of questions.
Melissa 29:40
I would throws this out there that occasionally, members get a little blowback, primarily from their family. As I said, we do have the ability to edit. We will have conversations that we get to the end of and somebody says, “You know what? You can't put that out there.” And I'm okay with that. And I don't. But sometimes people do share things that they don't think their families or anyone's going to really respond to. But they do. And sometimes, a lot of times, it's just really positive. I think their families hear them have a conversation just amongst friends. And they're like, “Oh, my gosh, I didn't even know it could sound like that.” Sometimes, families get their knickers in a knot a little bit about someone's perception of a situation. And then I get an email that says, “That is not how that happened.”
Ellen Bernstein-Ellis 30:42
Okay, so that's an important lesson. That's something that could happen as a podcast team. Okay. All right. Thank you, Melissa. Erin, you look like you want to say something or you.
Erin 30:52
So when we have a guest speaker, Melissa tells us, you know, if the guest speaker wants us to ask questions, or the group have questions for them, I will ask. But I think it's just, you know, what did Dante say? “A free for all?” No.
Chris 31:21
So honestly, that is 99.9%. (Laughter) Free-for-all.
Ellen Bernstein-Ellis 31:28
All right, everybody seems to respond resoundly to free for all. Yes! In the best sense of the word. So it's spontaneous and it's authentic. And it seems to me that you are learning from each other, as well. And that you kind of call each other out to be your best. I mean, that's what I'm seeing. Do you guys agree that you learn from each other in this situation?
Chris 31:54
Absolutely.
Dante 31:56
No Filter? (Laughter)
Ellen Bernstein-Ellis 31:59
What was that? Dante?
Dante 32:00
No Filter. No, no plan, nothing. Just, I'm sorry, I'm Dante. Just the plan, the question, just wing it. And expressions, and what did he say? Or just different groups, and just no filter? And you say it, and it gets better, but still more and more and more, just wing it.
Chris 32:32
And so the funny thing. I'm sorry, Chris, by the way. So Melissa will tell us, “Hey, this is what we are discussing.” And then 30 minutes later, that is not at all (laughter) what is the topic. Now it is so different from the topic. And then 30 minutes later, you are talking about, “What are you doing for lunch?” Or you know, or the tying the shoes or something like that. But that's one on my part anyway. But it's so random. That, that's what we love, because it is whatever I feel that day. That's it.
Erin
Yeah!
Pat 33:35
I don't think it's 30 minutes. I think it's about two or three minutes.
Ellen Bernstein-Ellis 33:39
It goes so fast. It feels like the conversation goes so fast.
Erin 33:42
Melissa will get us back on target.
Ellen Bernstein-Ellis 33:45
Target. Uh, Melissa, we'll get you back on target sometime.
Group: (Laughter; “eh” verbalization meaning “not so much”.)
Ellen Bernstein-Ellis
Okay. We have just a few minutes left, talking about two or three minutes, it feels like it's been two or three minutes. But this is June, which is Aphasia Awareness month. And I was wondering if any of you have any messages you want to put out there as we celebrate June as Aphasia Awareness Month? Any message for the listener about that?
Chris 34:13
So, Do More 24…
Dante
Slide in...slide in. (Laughter)
Ellen Bernstein-Ellis 34:18
Oh my gosh, I think that was quite a transition. Everybody's endorsing that. And that is…?
Group (laughter)
Chris
Oh yeah,
Pat
It’s too late.
Melissa 34:24
It's gonna be in May, Chris. It's gonna be too late. But, good try.
Chris
Damn it!
(Group laughter and some good natured pandemonium.)
Pat
Different math. It’s different math.
Ellen Bernstein-Ellis 34:38
I've never had swearing on the show before, but that's okay. It'll be the first.
Pat 34:43
Different math.
Ellen Bernstein-Ellis 34:43
Chris, I think you're saying it's never too late to support the Stroke Comeback Center. And that's just a great example of seizing the opportunity for advocacy. And I thank you for that. What else for Aphasia Awareness Month? What other messages can we share?
Kitti 35:01
Maybe, if your friend just say, “Hey, do you know what is aphasia mean?” Just teach people, one friend, or five friends…
Ellen Bernstein-Ellis 35:17
One person at a time, if that's what it takes.
Kitti
Yes.
Erin 35:20
And this is Erin, stroke.mama here. M-A-M-A
Ellen Bernstein-Ellis
Excellent.
Kitti 35:27
Is SAYyoungaphasia channel. YouTube. Check it out.
Ellen Bernstein-Ellis 35:31
You guys are getting it out there!
Erin 35:34
I want to say, if you have a friend with aphasia, and you go to dinner, or a group, you know, party with them, don't let them---include them in the conversation. I take a long time to speak. But I have something to say, you know, and I just want to be included. Well, I don't have a problem, because I will stop the conversation if I’m not included.
(Laughter)
Ellen Bernstein-Ellis 36:18
I just want to say this is an amazing, amazing team. I am so honored that I got to have conversations with you. And I am so appreciative, as a speech language pathologist, of how you are helping other people with aphasia. Not only people with aphasia, but I think the family, the community, and I hope other speech language pathologists who listen to this and get a sense of how important it is to give voice, to allow people with aphasia to tell their story, and to tell it in a real way. And I want to thank you for that. And I really treasure, you have something special here--your relationship with each other, and your positive belief in yourself and each other. So thank you. Thank you again, thank you for sharing your expertise with Aphasia access, and with all our members.
So on behalf of Aphasia Access, we thank you for listening to this episode of Aphasia Conversations Podcast. I'm going to tell Melissa that if she wants to collect any of these handles that have been shared today, I'll put them in the show notes. For more information on Aphasia Access, and to access our growing library of materials, go to www.aphasiaaccess.org. And if you have an idea for a future podcast series topic, email us at info at aphasiaaccess.org And thanks again for your ongoing support of Aphasia Access.
References and Resources
- For more info on the Stroke Comeback Center (SCC) use our website: Home - Stroke Comeback Center
- Follow SCC on FaceBook at: Stroke Comeback Center | Facebook
- For access to episodes of the SCC podcast, Slow Road to Better: The Slow Road to Better on Apple Podcasts
- Erin's Instagram: stroke.mama (https://www.instagram.com/stroke.mama)
- Kitti's social media handles: S.A.Y -- Younger Aphasia Group - YouTube https://www.instagram.com/say.younger.aphasia/ or https://www.facebook.com/groups/say.younger.aphasia
100 episodes
Manage episode 332866557 series 1285244
For today’s episode, Ellen Bernstein-Ellis, Program Specialist and Past Director for the Aphasia Treatment Program in the Department of Speech, Language and Hearing Sciences at Cal State East Bay, speaks with Melissa Richmond and members of the Slow Road To Better (SRTB) podcast group from the Stroke Comeback Center (SCC). This show celebrates Aphasia Awareness Month and is honored to feature 5 individuals with aphasia who are consumer advocates through their work on the Slow Road to Better podcast.
Guests:
Melissa Sigwart Richman, MS, CCC-SLP is a speech-language pathologist with 30 years of experience working in rehabilitation with stroke and brain trauma survivors. She holds degrees from James Madison University and the University of Maryland, College Park. Her career has included inpatient and outpatient rehabilitation, long-term care, home care, community-based and virtual settings. Melissa served as a Senior SLP on the inpatient Stroke Recovery Team for Medstar National Rehabilitation Hospital for over ten years and in 2006 became the Program Director for the Stroke Comeback Center in Vienna, Virginia. During her tenure, the organization grew to three locations starting with a handful of groups to well over 50 classes per week utilizing a life participation approach. In 2019, Melissa moved to the Outer Banks of North Carolina and started the Virtual Stroke Comeback Center which has continued to grow and thrive. She continues to focus her energy on improving the lives of survivors and families living with aphasia, with the primary focus of helping them get back to the business of living.
Slow Road to Better Podcast Team Members:
Kitti Tong: At the age of 27, Kitti Tong earned the CEO’s Exceptional Performance Award at Choice Hotels – the highest recognition in the company. A data analyst, growth strategist, and event facilitator, she founded a Toastmasters Chapter in Maryland and co-chaired several committees for women’s leadership and human rights. Kitti’s life was changed forever when she was struck by a car walking home from work, sustaining a severe traumatic brain injury. With determination and grit, she relearned to walk, talk and participate in life. She has founded S.A.Y. Younger Aphasia on YouTube to help create awareness of this isolating condition.
Kitti's YouTube channel is: S.A.Y -- Younger Aphasia Group - YouTube
Pat Horan: My name is Pat Horan, I was a Captain in the Army. In 2007 I was wounded in combat serving in Iraq. After my injury I couldn't talk, read or write. Over the past 10 years the Stroke Comeback Center has helped me improve my writing, reading and speech more than I could have ever thought possible. Today I am a proud father of a new son and an adopted nephew. My continued recovery will help me be a better father and husband.
Erin Adelekum: Erin's Instagram is: stroke.mama
Chris Vincent
Dante Thomas
Listener Take-aways
In today’s episode you will:
- Learn how interprofessional education with physical therapists led to the launch of this member-focused aphasia podcast.
- Find out how the members prepare for the podcast by embracing spontaneous conversation
- Listen to members share insights on the benefits of being part of the SRTB podcast
- Hear the podcast team share the insight that even though aphasia is not “leaving it, but we’d like to crush it a little bit.” Crush it, they do!
Edited show notes
Ellen Bernstein-Ellis 00:54
Welcome to the Aphasia Access Aphasia Conversations Podcast. I'm Ellen Bernstein Ellis, Program Specialist with the Aphasia Treatment Program at Cal State East Bay in the Department of Speech, Language and Hearing Sciences and a member of the Aphasia access podcast Working Group. Aphasia Access strives to provide members with information, inspiration, and ideas that support their aphasia care through a variety of educational materials and resources.
In recognition of June being Aphasia Awareness Month, I'm excited and honored to be today's host for an episode that features the five members of the podcast team from the Stroke Comeback Center located in Vienna, Virginia. They are joining me today along with Melissa Richmond, the speech pathologist who produces the show. The Slow Road to Better has launched over 100 episodes that offer authentic and engaging discussions about how to adapt and live well following brain injury or stroke. They share what keeps them all on the “slow road to better”.
Welcome everybody! And I'm going to start with Melissa's introduction. And then I'll ask the podcast members to introduce themselves.
Ellen Bernstein-Ellis 03:21
Melissa, thanks for joining us today. And now I want to get the rest of this show on the road. But in this case, it's actually The Slow Road to Better. I want to have the team introduce themselves. I'm excited to have the podcast team here today. I was wondering who wants to jump in first with the introduction? Because we got five of you. Any volunteers? So Chris, let's start with you. And could you share with our listeners, what was the cause of your aphasia?
Chris 03:48
So I was on the motorcycle on the way to a fire meeting. And some guy didn't see me and ran into me.
Ellen Bernstein-Ellis 03:58
So traumatic brain injury.
Chris 04:01
Yeah, absolutely. So 10 years, and I only said, “yes”, “no” and four or five curse words, which is important for firefighter, and military and everything. And then obviously I am talking, walking everything.
Ellen Bernstein-Ellis 04:19
Thank you, Chris. And how old were you when you had this brain injury?
Chris
Twenty seven
Ellen Bernstein-Ellis
And how long have you been living with aphasia? How long ago was that?
Chris
10 years.
Ellen Bernstein-Ellis 04:31
10 years? Okay, and Chris, one more question. How long have you been a podcast team member?
Chris 04:36
Since the beginning? So six, seven years?
Ellen Bernstein-Ellis 04:40
Six or seven years? I saw Melissa holding up six too, so 6-7 years. All right. So you’re an original team member?
Chris 04:47
That's correct.
Ellen Bernstein-Ellis 04:48
That is fantastic. Okay, and who goes next? Kitti, are you calling out somebody? Oh, Kitti is volunteering.
Kitti 04:56
Kitti, I’m Kitti and three years ago I was hit by the car. But Chris and I, and I was 27. Yeah. And
Ellen Bernstein-Ellis 05:10
That was three years ago. And how long have you been the podcast team member, Kitti?
Kitti 05:15
Two years, two years and now.
Ellen Bernstein-Ellis 05:18
Okay. All right. Well, thank you for starting off. And do you want to call somebody next for me?
Kitti 05:27
Oh, wait, wait, wait.
Ellen Bernstein-Ellis
What else?
Kitti
Yeah. I was silent. But now I'm better. Okay. Let’s call Pat.
Ellen Bernstein-Ellis 05:32
Thank you, Kitti, Pat, what was the cause of your brain injury? You've shared that with us that you're a veteran.
Pat 05:42
Yep. I'm Pat Horan. I got hurt when I was in Iraq. I had been there for a year and for no good reason, I got a shot in the head. And that was 15 years ago.
Ellen Bernstein-Ellis 05:56
And how long have you been a podcast member?
Pat 05:58
I think I’ve been doing it the whole time also.
Ellen Bernstein-Ellis 06:00
So two original members, right? Kitti is a new kid on the block, I guess for podcasting. Okay, Pat, thank you so much. And I see Erin waving her hand. So you are next. Erin. Welcome. And what's the cause of your aphasia? How did that happen?
Erin 06:19
So, I'm Erin. And IG (Instagram) knows me as strokemama.mama. I was 39 When I gave birth to my daughter. And nine days later, I had a stroke.
Ellen Bernstein-Ellis 06:37
How long ago was that again?
Erin
Ellen Bernstein-Ellis
Okay, so you have a two year old.
Erin 06:42
One and a half. She turns two in July.
Ellen Bernstein-Ellis 06:46
Beautiful. Okay. And Erin, how long have you been part of the podcast team?
Erin 06:50
I'm going to come on my year in, maybe, October or August? Or September?
Ellen Bernstein-Ellis 07:01
All right, close enough. Close enough. So you're kind of new like Kitti. Okay, thank you so much. Thank you, Erin. And last, but certainly not least, is Dante then. So Dante? What was the cause of your aphasia? Can you share that with our listeners?
Dante 07:17
It's a long time, but I got my pills and stroke. And about five years and I'm improving and words and is really good. So yeah.
Ellen Bernstein-Ellis 07:33
Thank you for sharing that. And how long have you been a member of this podcast team? Oh, one
Dante 07:40
Oh, one year.
Ellen Bernstein-Ellis 07:41
About one year? Okay.
Well, I want to thank all of you. I am honored to be here. I am a huge fan. I have been listening to your episodes. And I am just so impressed. I'm just so impressed with what you've accomplished. And we want to talk about that today. Before we jump into your experience, I'm going to circle back to Melissa, just for a minute. And Melissa would you share with our listeners? What inspired you to do this? How did this happen?
Melissa 08:09
We were actually inspired by a physical therapy student. I was asked to give a lecture at Marymount University to help the physical therapy students understand what speech pathology was and what their role is, as part of a rehab team. And I brought some members from the Stroke Comeback Center with me to tell their story about living with aphasia. The person, his name was Jimmy McVeigh, said I think you all should do a podcast. And he had podcasting and radio in his background. And he said, I will help you, which he did for a few months. And we first had our podcast out on his feed, which was called the PT podcast. Then, you know what happens with students. They graduate and get jobs and real lives. So he didn't really have the ability to help us anymore. And so the members really enjoyed the podcast and wanted to keep it going. So we just picked up where we were, and use what we had, and started our own feed with the help of some friends. And so in 2017, I guess we officially kicked off The Slow Road to Better on our own RSS feed.
Ellen Bernstein-Ellis 09:39
Wow, you kind of just rolled up your sleeves and did it, I think.
Melissa 09:43
We did. I always tell people, like file it under things they did not teach me in grad school. Okay,
Ellen Bernstein-Ellis 09:50
Okay, share with our listeners who might be thinking “maybe we can do this too” what do you do to set up an episode?
Melissa 09:58
Really, what I do is support a conversation among members of The Stroke Comeback Center. The way that I see it, my job is to manage the logistics. We record on Zoom. I get us all together. And most of our conversations are really just authentic conversations-- things that come up with the members who are really doing their best to live well with aphasia.
Ellen Bernstein-Ellis 10:30
I was just going to ask what really makes a good show topic. I think that's what you're kind of referring to here.
Melissa 10:36
Yeah, authentic conversations feel like stuff. And some of it is serious. Some of it is people dealing with loss of independence, or they feel like their relationships are different, power is different, financial issues. And sometimes it's, I really want to wear my cute shoes and I have this stupid brace. Or, oh my gosh, I'm trying to wear my contacts and I have to put them in with my weak hand. We had a long conversation about how do I shave my armpit on my weak side? You know, so?
Ellen Bernstein-Ellis 11:12
Wow, the real stuff or Yeah, stuff.
Melissa 11:14
The stuff that friends talk about when they get together? Those make the best conversations. We don't plan. We don't fret. I don't give out the questions. I pretty much turn it over to the members, and they take control.
Ellen Bernstein-Ellis 11:29
Sometimes you have guests and the podcast team asks questions. I listened to the episode this week with a physical therapist, and that was fabulous. Hearing people share their questions about their experiences and, and really very empowering. I mean, just being in charge of your own life and your own rehab. That's, that was my takeaway.
Can I ask who is a good candidate to be a podcast team member? What are your thoughts about that?
Melissa 11:56
From my perspective, any survivor with aphasia, who is willing to put out their honest, authentic self---the good, the bad, and the ugly, I don't think it's fair for podcasters to come out and say all the good stuff like I'm doing so great. Even though I had a stroke, life is great. It's not. There are a lot of days that really suck. And there are a lot of days where we shed some tears during this podcast, and we've had a lot of failure. I think it takes a lot of courage and a lot of grit to be willing to come on to this podcast and put your true self out there that I really wanted this, but it was a fail.
Ellen Bernstein-Ellis 12:45
I'm just gonna say that that honesty, that grit, that resilience has shined through every episode I've listened to so far. That's why I become such a big fan.
And one more question, Melissa, then let's open it up to the whole team. And that is, what benefits have you seen for the members from being part of this podcast? What are the benefits of this podcast? I'm going to be asking the members that in a moment.
Melissa 13:11
I think some of the best outcomes have been the survivors being able to share their story with other survivors. Being able to give back to a community. Being willing to put themselves out there and say, “If I can do it, you can do it.” Building a bridge of hope. Which is what we say in our intro, and that's really what our members want. I think they understand that not everybody has a Stroke Comeback Center. And I think they understand what this center and the impact of having friends with aphasia has done for them. And they want to do that for someone else. So I think that's probably the biggest outcome.
And really, it's a great way for the members to track their communication progress. And I say it all the time. Go back to when you started listening, and listen to your communication. And then listen now. Because when I edit, which is really what I would say is my most significant role is, I am the editor and the uploader of all podcasts, is that it's a record of their progress. And it's amazing. It's really a way for our listeners to go “Well they sound great now, you know, they clearly didn't have that much aphasia.” Go back and listen six years ago and see what it sounds like, because I don't try to make people sound like they don't have aphasia. What would be the point of that?
Ellen Bernstein-Ellis 14:54
You just mentioned your opener, and the first time I heard the show, I was completely reeled in by that opener. It just hooked me because, first of all, it starts with someone saying, “Come in, come on in, come on in.” And that's exactly right. You are welcoming people into your lives with aphasia, and you're saying, “I'm here. And I'm going to share.” I mean, that was just so empowering. I'm going to play that clip. It’s engaging. It's collaborative. Right away that that opening captures everything. So let me play it for the listeners. And then we'll come back again.
OPENING ROLL OF SLTB PODCAST PLAYS
Ellen Bernstein-Ellis 16:40
I hope the listeners enjoyed that clip as much as I have. I just want to say it's fabulous, every part, every line, but maybe I have a favorite piece. And that's when Pat* says something like, you know, aphasia isn't going to go away. But we want to crush it. And I think that's what happens with every episode, that determination, just to crush it. (Note: original recording says “Chris” instead of “Pat”, but the correction is noted later in the recording.)
So with that, let me throw out a question to this fabulous team. And that is what do you all think is one public benefit? What do you think listeners can take away from this? And what's a personal benefit of the show? So if you could just to speak to either a public benefit or a personal benefit that you you have experienced? Do I have a volunteer? Is Kitti going to call on somebody for us?
Erin 17:37
It’s Erin. I think the public benefit is seeing how funny, or sarcastic, or you know, kind, or the troubles that aphasia survivors go through and realizing that they are just as funny, or even more funny, than when they didn't have aphasia. And then I think the personal benefit is having a group that I think, the personal benefit for me is having a group of aphasia people to talk with. And I know that I am so much better, you know, the aphasia is so much better than when I first started the podcast.
Ellen Bernstein-Ellis 18:43
That's beautiful. So it's really the sense of camaraderie. And it's also the sense of sharing with others. You're not alone, just normalizing this whole thing. Erin, thank you, and who else wants to share any response to this first question? I see Kitti raising your hand.
Kitti 19:03
Hi, I’m Kitti. In my podcast, I'm full funny, half philosophy, I'm half joking, I'm half serious. And now, before I was still me, and now I'm still me. Just mindset you know, just mindset.
Ellen Bernstein-Ellis 19:24
So being yourself is part of the maybe public benefit because you can let people see who you are. You're a person you're still you. What's been a personal benefit for you Kitti?
Kitti 19:35
I'm still me like before and after I'm still me, you know what? Change, I have aphasia but I am still me. Before I was speaking convention. Now, I am still convention. You know?
Pat 19:51
I think it's really, like
Ellen Bernstein-Ellis
Is this Pat?
Pat
Oh, sorry, I am Pat. Yeah. I was also Pat, the one that said--I'm sorry, I'm thinking right now, I shouldn't think—It wasn't Chris that said it. I said I was the one who said, “I'm the one, I would crush.”
Ellen Bernstein-Ellis 20:09
Oh, I got that wrong.
Pat 20:11
Yeah, even you it happens to you.
Ellen Bernstein-Ellis 20:14
Absolutely, oh heaven’s, yes. So Pat, thank you for that. So we'll put the tribute where tribute’s due. Sorry, Chris. I'm gonna toss that one over to Pat. So Pat, what's your,
Pat 20:23
I just think it's like, like Kitti was saying, like how she's doing the YouTube and stuff. But like, she went last year--I think, she went down--she went to Vegas to go talk with some other people, you know. And I've been, you know because I got hurt so many years ago, but I've got to go to other colleges around here. I used to have a working dog and I, (unclear) dog, they asked me a couple times to go and we'd go and talk to--I can't remember where we went, somewhere in Maryland. And there was like, over two or three thousand people there that I had to talk with about my dog, Wilson. And it was funny because Wilson was perfect. Like one time, it was really great. We went to, Chris what was that name of that college we went to? Marymount….
Erin 21:22
Chris and you… went to Marymount?
Pat 21:24
So we were there, was that for PT maybe? And we did—that, that was, sorry Chris, her name was Kim. And then me. I don’t know, there's a bunch of students there. And Melissa was there, but she told us that we weren't allowed to talk, or she wasn't gonna talk, no matter what.
Ellen Bernstein-Ellis 21:49
Oh, so it was all on you guys. So Pat, are you telling me that part of the benefit from this podcast is that you've really gained kind of the confidence to go out into public and share these messages? Do you think that's been one of the benefits of working on this podcast? Or are you just saying that it’s a sense of advocacy that you've really become even a stronger advocate?
Pat 22:11
So that's the problem for me is, I don't know big words.
Ellen Bernstein-Ellis 22:15
Absolutely. So you stand up for yourself, you're empowered. Pat, I think you're very empowered.
Pat 22:21
Or, just like the movie, I'm just “living the dream”, you know. (laughter) I want to go out and have fun. I want to enjoy—I don’t want to get into this whole thing with me, but I'm excited that I lived, you know. And so I'm just, like to get out there, you know, when I can talk with people and talk and stuff. And I'm not perfect. I'm not, I'm not the king of the world. I'm not the best, but I just want to help other people. That's what we started years ago.
Ellen Bernstein-Ellis 22:47
So that's one of your motivations, then. You're just here to help others too, so a real sense of altruism, and just having that role of a mentor and a helper. That's great. Thank you.
Dante or Chris, do you want to jump in on this question at all? What's the public benefit or a personal benefit of this podcast?
Dante 23:09
Dante. The beginning talk, and very little, but then more and more. Sentences and just driving and more and more and more. Like, the mall and talk, and just nothing, and I gain and more and more. So yeah, it's definitely improving. And just more and more and more and group and, and yeah, just flew in and just really talk, and is leaps and bounds and expressing and laughing and….
Ellen Bernstein-Ellis
That's beautiful, Dante.
Dante
Definitely not sound it out, but just expression and reading and on YouTube. Just more and more and more expressive. Just talk and let me know, and it's definitely getting much better.
Ellen Bernstein-Ellis 24:12
And that's an important message for listeners to hear. I think that people continue getting better. There is just a better. I think that's so important. In your last episode, you guys talked about that whole, I call it the “P word”. When people are told there's a plateau, is the “P word”. You know when you. are told that you're gonna get better for six months and stop. And you guys kind of blow that through the roof and say, “No, we keep getting better year after year, because we're working at it.” So, Chris, is there something you want to add to this part of the discussion about a public benefit or a personal benefit of the show?
Chris 24:52
Yeah, I mean, so in the world, you have aphasia or TBI. And a lot of people don't have what we have. It kinda--Melissa shows us what the USA and then all over the world. I mean, there's a lot of people that have aphasia or not, and just listening and..
Ellen Bernstein-Ellis 25:28
Right, your show has had over 50,000 downloads. And we know there are over 2 million people with Aphasia just in the US, and that doesn't
even touch the rest of the world. So, Chris, you're saying it gets the message out there. And as Melissa said earlier, there's not --not everybody has access to an aphasia center like you guys all have. Access to your fabulous Stroke Comeback Center. So thank you, Chris, way to kick this off-- your discussion.
And I was wondering if you'd be willing to share any important lessons with the listeners about your podcast experience? You know, what, what type of insights or good lessons or hard lessons have you had with being a podcaster? Your humor is definitely been a good lesson for me, you guys can just let it roll. And that's a part of the magic, I think, is the humor you share with each other. And you call each other out? That's for sure.
Chris 26:22
Yeah. laughing And then there's some days that are not happy. It's sad. And it's just… and I think there's laughable moment on each episode. Some are very touchy. But you know, I think that is podcast. And that's what the benefit of listeners. We are not happy all the time.
Ellen Bernstein-Ellis 27:03
Yeah, that's very real. And it sounds like this is really storytelling. It's sharing your life. It's the lived experience here. And that's what you're bringing to the listeners. Any other important lessons that you guys can share with us? Kitti?
Kitti 27:19
Hi, I'm Kitti. For someone say that I was crying, or I was joking, or I just didn't make sense. And I said, “Do you know what I mean?” And then Melissa said, “I don't (know) what I mean. (Laughter) You know, just okay. One second. Okay. I'm feeling like that we are podcast. Feel like that, what is aphasia? What is different? And what is my benefit? Not me. Not Chris. Not Dante. Not Ellen. Not Pat. But what is most me? Do you know what I mean?
Ellen Bernstein-Ellis
Help me with this.
Melissa 28:09
This is where I have to say no, I don’t know what you mean.
Pat 28:12
I think this is what you might say, Kitti, just let, if I'm totally wrong, you tell me. But like when you go to see any PT, OT, or speech or whatever. And I've had some of these people that are for speech, were like, you know, this and that, you got to do this. And then, just like, but wait, you're doing the same thing with all the, what the people that have a, you know, a stroke or a TBI. And you're like, wait, you can't tell everybody the same? We're all different people, all of us, you know. So? Is that what you're trying to tell Kitti at all? Or am I totally wrong?
Kitti
Yes.
Ellen Bernstein-Ellis 28:54
And nice job, Pat. And Kitti. Are you also saying that sometimes because it's not about any one story or any one person, but it's the bigger piece of everybody helping each other that you…
Kitti 29:13
Yeah, like we are human. The normal people is human. We are human. We are both human, not like disability, but different ability, you know?
in-Ellis 29:26
So each of you are telling your story in your own way.
Any other important lessons that you would want the listeners to understand about this podcast experience? And if not, I have other questions, not to worry, I don't run out of questions.
Melissa 29:40
I would throws this out there that occasionally, members get a little blowback, primarily from their family. As I said, we do have the ability to edit. We will have conversations that we get to the end of and somebody says, “You know what? You can't put that out there.” And I'm okay with that. And I don't. But sometimes people do share things that they don't think their families or anyone's going to really respond to. But they do. And sometimes, a lot of times, it's just really positive. I think their families hear them have a conversation just amongst friends. And they're like, “Oh, my gosh, I didn't even know it could sound like that.” Sometimes, families get their knickers in a knot a little bit about someone's perception of a situation. And then I get an email that says, “That is not how that happened.”
Ellen Bernstein-Ellis 30:42
Okay, so that's an important lesson. That's something that could happen as a podcast team. Okay. All right. Thank you, Melissa. Erin, you look like you want to say something or you.
Erin 30:52
So when we have a guest speaker, Melissa tells us, you know, if the guest speaker wants us to ask questions, or the group have questions for them, I will ask. But I think it's just, you know, what did Dante say? “A free for all?” No.
Chris 31:21
So honestly, that is 99.9%. (Laughter) Free-for-all.
Ellen Bernstein-Ellis 31:28
All right, everybody seems to respond resoundly to free for all. Yes! In the best sense of the word. So it's spontaneous and it's authentic. And it seems to me that you are learning from each other, as well. And that you kind of call each other out to be your best. I mean, that's what I'm seeing. Do you guys agree that you learn from each other in this situation?
Chris 31:54
Absolutely.
Dante 31:56
No Filter? (Laughter)
Ellen Bernstein-Ellis 31:59
What was that? Dante?
Dante 32:00
No Filter. No, no plan, nothing. Just, I'm sorry, I'm Dante. Just the plan, the question, just wing it. And expressions, and what did he say? Or just different groups, and just no filter? And you say it, and it gets better, but still more and more and more, just wing it.
Chris 32:32
And so the funny thing. I'm sorry, Chris, by the way. So Melissa will tell us, “Hey, this is what we are discussing.” And then 30 minutes later, that is not at all (laughter) what is the topic. Now it is so different from the topic. And then 30 minutes later, you are talking about, “What are you doing for lunch?” Or you know, or the tying the shoes or something like that. But that's one on my part anyway. But it's so random. That, that's what we love, because it is whatever I feel that day. That's it.
Erin
Yeah!
Pat 33:35
I don't think it's 30 minutes. I think it's about two or three minutes.
Ellen Bernstein-Ellis 33:39
It goes so fast. It feels like the conversation goes so fast.
Erin 33:42
Melissa will get us back on target.
Ellen Bernstein-Ellis 33:45
Target. Uh, Melissa, we'll get you back on target sometime.
Group: (Laughter; “eh” verbalization meaning “not so much”.)
Ellen Bernstein-Ellis
Okay. We have just a few minutes left, talking about two or three minutes, it feels like it's been two or three minutes. But this is June, which is Aphasia Awareness month. And I was wondering if any of you have any messages you want to put out there as we celebrate June as Aphasia Awareness Month? Any message for the listener about that?
Chris 34:13
So, Do More 24…
Dante
Slide in...slide in. (Laughter)
Ellen Bernstein-Ellis 34:18
Oh my gosh, I think that was quite a transition. Everybody's endorsing that. And that is…?
Group (laughter)
Chris
Oh yeah,
Pat
It’s too late.
Melissa 34:24
It's gonna be in May, Chris. It's gonna be too late. But, good try.
Chris
Damn it!
(Group laughter and some good natured pandemonium.)
Pat
Different math. It’s different math.
Ellen Bernstein-Ellis 34:38
I've never had swearing on the show before, but that's okay. It'll be the first.
Pat 34:43
Different math.
Ellen Bernstein-Ellis 34:43
Chris, I think you're saying it's never too late to support the Stroke Comeback Center. And that's just a great example of seizing the opportunity for advocacy. And I thank you for that. What else for Aphasia Awareness Month? What other messages can we share?
Kitti 35:01
Maybe, if your friend just say, “Hey, do you know what is aphasia mean?” Just teach people, one friend, or five friends…
Ellen Bernstein-Ellis 35:17
One person at a time, if that's what it takes.
Kitti
Yes.
Erin 35:20
And this is Erin, stroke.mama here. M-A-M-A
Ellen Bernstein-Ellis
Excellent.
Kitti 35:27
Is SAYyoungaphasia channel. YouTube. Check it out.
Ellen Bernstein-Ellis 35:31
You guys are getting it out there!
Erin 35:34
I want to say, if you have a friend with aphasia, and you go to dinner, or a group, you know, party with them, don't let them---include them in the conversation. I take a long time to speak. But I have something to say, you know, and I just want to be included. Well, I don't have a problem, because I will stop the conversation if I’m not included.
(Laughter)
Ellen Bernstein-Ellis 36:18
I just want to say this is an amazing, amazing team. I am so honored that I got to have conversations with you. And I am so appreciative, as a speech language pathologist, of how you are helping other people with aphasia. Not only people with aphasia, but I think the family, the community, and I hope other speech language pathologists who listen to this and get a sense of how important it is to give voice, to allow people with aphasia to tell their story, and to tell it in a real way. And I want to thank you for that. And I really treasure, you have something special here--your relationship with each other, and your positive belief in yourself and each other. So thank you. Thank you again, thank you for sharing your expertise with Aphasia access, and with all our members.
So on behalf of Aphasia Access, we thank you for listening to this episode of Aphasia Conversations Podcast. I'm going to tell Melissa that if she wants to collect any of these handles that have been shared today, I'll put them in the show notes. For more information on Aphasia Access, and to access our growing library of materials, go to www.aphasiaaccess.org. And if you have an idea for a future podcast series topic, email us at info at aphasiaaccess.org And thanks again for your ongoing support of Aphasia Access.
References and Resources
- For more info on the Stroke Comeback Center (SCC) use our website: Home - Stroke Comeback Center
- Follow SCC on FaceBook at: Stroke Comeback Center | Facebook
- For access to episodes of the SCC podcast, Slow Road to Better: The Slow Road to Better on Apple Podcasts
- Erin's Instagram: stroke.mama (https://www.instagram.com/stroke.mama)
- Kitti's social media handles: S.A.Y -- Younger Aphasia Group - YouTube https://www.instagram.com/say.younger.aphasia/ or https://www.facebook.com/groups/say.younger.aphasia
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