Cynthia Ryan
Welcome to the ICU Podcast where we explore the vestibular experience through conversations between patients and the health professionals who care for them.
Kimberly Warner - Unfixed Media
During this podcast, we invite patients to share their stories and healthcare professionals to ask questions. So they are equipped to better care for and truly see the invisible challenges faced by their patients. I'm Kimberly Warner.
Cynthia Ryan
And I'm Cynthia Ryan. And we are your hosts on this journey of discovery. Welcome, everyone, to our ICU podcast, I'm so excited about this topic of peer support. Because peer support is, is such a key pillar to lead as mission and actually the way that Vita got started as a support group here in Portland, Oregon. So I'll tell that story as we get going, but first, I just wanted to kind of give an overview of what a support group is a support group provides a unique and critical service of acceptance. This forum allows individuals to ask questions and to learn in a non judgmental, and safe environment. Participants know that everyone attending the meeting understands and has compassion for the functional difficulties of getting through each day. As a vestibular patient. As a result, less frustration and energy are spent proving or defining limitations, and more energy is available for appreciating the character and companionship offered by others and recognizing their own personal self worth. We know that support groups play an important role in recovering from vestibular dysfunction, and helping people discover, quote, their new normal. Today we'll talk to two people who have experience with the power of peer support. So I'm going to start by introducing one of our guests, Sara Khan over who is a licensed physical therapist and certified health coach. She helps people recover from dizziness and imbalance so they can get back to work, family responsibilities and the act of pastimes they love. Through one on one telehealth visits and her online support group programs. Sara uses a diverse approach to address chronic dizziness, as well as the anxiety and fears that often coexist. Sarah has degrees from the University of Evansville and the University of Indianapolis, she obtained her VISTA Bureau, the sorry, everybody the stimulator competency through the rigorous Hurdman program at Emory University in 2005. And also has advanced training in Acceptance and Commitment Therapy, functional nutrition and mindfulness based reduction. Welcome, Sarah. Thank you. Thanks, Sara. Thank you, good to be
Kimberly Warner - Unfixed Media
here with us. And I think probably everyone who's listening knows who David is David Morel. Actually, let me ask you this really quick, more real moral morale. How do we pronounce pronounced moral
David Morrill
is a French pronunciation of morale, but I am actually I go by moral. Yes. I like that because you're a very moral human being Oh, thank you.
Cynthia Ryan
So also sounds like the mushroom. Yes, it does, which is its foraging time here in Oregon.
Kimberly Warner - Unfixed Media
So for those of you who don't know who David is, his vestibular disorder was caused by a stroke. During his recovery, he found himself struggling with constant dizziness and imbalance. He didn't know where to turn until he found Vita like many of us. Vita helped David understand his disorder and gave him hope that someday he could regain so many things he'd lost to his disability. Today, David gives back to the community who supported him. He is the chair of vetos volunteer Ambassador board. He's facilitated in person, virtual and Facebook support groups and he is VITAS Community Support Coordinator of a lot of amazing things that have come from your stroke. David, welcome to the show. We're excited to have you here with us. Let's actually just cycle in your story a little bit so people know a little bit more about the journey that you've been on and how you got connected with vida. So David, do you want to jump in?
David Morrill
Sure. My journey began and I can't believe I'm saying is almost 10 years ago now. I had a stroke. It was it was a little bit different than And then most strokes, it was tough to diagnose and I was actually misdiagnosed in our local er. But after that stroke, it became even more struggle. Because when I was with the therapy and the doctors were trying to treat me they were trying to treat me like a regular stroke patient. But my problem, because I had the stroke in the cerebellum and my brain, it damaged part of my brain, I had mostly imbalance and dizziness and those that and I have almost all the same symptoms as a vestibular patient with inner ear problems, other than the food thing or the weather changes, I don't, luckily, I don't have to endure those. But a lot of the same things that have distributed patient with inner ear, I had the same type of challenges. And some of the therapists and doctors just didn't understand that because from what I'm hearing, what I have is not very common, it's a very rare, it has to pinpoint your brain in a specific place. So my journey began with that stroke. And what I found when I was recovering from that stroke, there wasn't a lot of people that understood what was going on. And, and I went to, you know, a lot of therapy a lot. And I even went to some support groups for stroke. But it didn't, didn't it. It wasn't gelling with what I what I had, because nobody understood, I was, you know, I had bounced issues and dizziness issues. And nobody understood that most of the therapists and I'm not blaming them, because they really hadn't seen this. But they were trying to rehabilitate, making sure my legs are strong, my arms are strong. All of that was not affected by my stroke, it was mostly my balance. And I and I even told the therapist that I can get my balance back, I think I'll feel a lot better. So that is kind of how my story started. A goes. I mean, my story can go for hours. I know Cynthia's heard a lot of it. That's the short version. You know, I'm a little different than most people, but the passion and the in the vestibular issues that I have, for others is the same as most people that have an inner ear problems.
Cynthia Ryan
And I think that so Oh, go ahead. So yeah, I think it's so key, what you said about your medical, your, your medical providers, your healthcare providers didn't understand what you were going through. And of course, you know, you know, no one in the in the stroke community could get what you're going through. And that's really, I think one of the keys of a support group is that, you know, here's a group of people who understands what you're going through, and the validation that you get from being with that group. In the beginning, I was talking about how we started as a support group. And it was, you know, so this was over 30 years ago, when vestibular disorders were even less well known than they than they are today. And vestibular, especially within the healthcare community, and, and these, these patients were going to their health care providers and being told it's all in your head, there's nothing I can do for you. And they finally found this one health care provider, Dr. FLN Black, who was a pioneer in the vestibular medical healthcare industry, and, and he said, Yeah, this is real, you know, this validated what they're going through, and, and I think you guys should get together. And so they did. And, and that, you know, and the rest is history, as they say. But, you know, and since then, we'll get, I'm sure I'm getting off track here a little bit. But since then, you know, support groups they've met in person since then support groups have gone through just these huge changes of, you know, from in person to online to virtual format, so we can talk more about that. But the core of it is that, you know, support groups provides that validation that you're not crazy, you're not alone. And there, there are people who, you know, make you feel like a normal person.
Kimberly Warner - Unfixed Media
Real quickly, David, before we jump in, I want to hear from Sarah but how did you find vida? Was it a Google search? Or?
David Morrill
It's kind of a cool? Yeah, it was it was a Google search, but indirectly, so I was looking for others, because I had dizziness after a stroke. And that was my main symptom. I was looking for others like me. I wanted to find a stroke patient that had dizziness. So I was looking online and Google search and like you said, and I and I happened to come across a and Cynthia knows well, I have a professor at Johns Hopkins University. His name is David Newman toker, he was developing a lot of tools and equipment for people that are diagnosis of stroke, through dizziness, and he was working with that. So I kind of just reached out to him. And you know, is it am I going crazy? Is this a real thing? And he's absolutely a real thing. As a matter of fact, I'm doing a bunch of studies and I want you to be part of these studies. And then he goes and also you have to get a hold of this organization in Portland. It's called Vita. The other one ones that, you know, are really in tune with your dizziness and imbalance. So I reached out to Vita, build up the volunteer application. And I was I took off and the rest is, you know, here I am
Cynthia Ryan
awesome. I think your, your internet connection might be a little slow. So we only heard of that. But, um, but I think again, that's a great example of how this is, you know, it's it's healthcare professionals connecting with patients. And it's, it's a team, you know, it's, especially with support groups, and I'd like to talk more about that is, you know, some support groups are run by, by patients, some support groups are run by healthcare professionals. So, you know, was that Sarah? What was your pathway to becoming involved with, and leading a support group of people for vestibular dysfunction? Yeah,
Sarah Conover, PT
so it was kind of a natural pathway. I'm a vestibular physical therapist, I've been a physical therapist for over 35 years. And for the last 20 years or so I've been exclusively treating and working with those with vestibular issues. And so it, it happened. We started a local group in the area where my practice is, I kept having patients just tell me like David said, it where is there another person like me, I feel like I'm all alone. I'd love to talk to another person. And so I kept having people sort of, with that same kind of desire. And so with a couple of the prompting of a couple of patients of mine, we were just I said, Okay, or if we start this, are you going to come? You know, yes, I'm all in. So we started a local group. And it was just a couple people, sometimes even one just one showed up for a while it got and then it, it snowballed. Really, because once people know, there's a support support system like that, they want to be involved, for sure. Really, the the biggest drawback was like the driving and driving at night at times, and you know, that sort of kept people at home sometimes, but, so that was around 2014. We started meeting in person, and then the lockdowns hit in 2020. And, and so I took it online, I took the support group online, and actually that that Dayton area support group, we actually met, um, we increased it to we were meeting twice a day, or once a month, and we increased it to every other week, just because people were needing extra support that my my group was just wanting to be, you know, connecting. And about at that same time is when I started with the Tuesday morning group, I just said yes, I can take another it may have been David that asked me hey, can you take another group? And? And I said sure, because it's it's enjoyable. I'm meeting a lot of new people each month and and yeah, that's so that's how I, I came upon facilitating support groups.
Kimberly Warner - Unfixed Media
And Sarah, you don't have you don't have a vestibular disorder yourself? Correct?
Sarah Conover, PT
I do not. I do not. I have I have tinnitus at times from something different, but not. So I can relate to that. But not that you
Kimberly Warner - Unfixed Media
run a support group, I was just curious, because if I missed that in your your backstory, because I know obviously, David, you started a support group. And do you have a vestibular disorder? So I'm curious what that's been like for you, you know, living with it inside and facilitating others.
David Morrill
So yeah, I started this out of the need for I knew others needed it and and there was there wasn't that many people out there that were doing this type of thing. So I jumped right into it and let it and it's great to have a patient read it as well. And I always talk about this with my support when I talked to support group leaders before they joined it possible. I like to have a patient and a professional like Sarah involved with your support group. Because I can do a lot of the patient what how they feel, how they've been and what they've gone through. Whereas clinical people like Sarah and I'm lucky to have a person right now in my online support group that is helping me out I'm facilitate that group as well. And any of the tough clinical questions that come up. She's taken those for me. So, but yeah, it was out of a need, for necessity, didn't see a lot of them around. Like I said, I went to a local support group for stroke. It didn't, it didn't help me at all, because it wasn't they weren't. They weren't doing having the same issues that I were I was having all the balance issues now, rather than having balanced issues. It was all muscular and other issues that they were incurring. So I felt that, you know, people needed it. So I kind of got one started. And I started locally in Maine, where I was originally from. And, you know, and then we went from there. I, you know, I joined Lita, we've done a number of the online groups that Sarah was talking about. We did We did online groups before COVID. So we were we were uniquely ready when COVID came to hosts online support groups.
Kimberly Warner - Unfixed Media
Yeah, you know, I wanted to say when I my first experience with support group actually was with bereavement, I started there's a group here in Oregon called Dougie center, and I lost a parent in high school, and I didn't even know support groups existed. And I was 26 years old when I discovered the Dougie center. And it was I discovered it, but as a facilitator. So, you know, I could have should have, I should have joined as a participant, but I was probably still too, like, I'm better from this grieving process. So I joined in, but as a facilitator, I found it was still very therapeutic, just to be surrounded by people who understood the experience. So I feel like I just wanted to add that because I think whether or not, you know, there are many different ways to participate in these groups. And it's, it's surprising to me that, you know, even organizing the gathering can be therapeutic on some level.
David Morrill
Oh, absolutely, absolutely. It is, when I was recovering from the stroke, and from an having this, jumping into volunteerism, and especially support groups, was very therapeutic, because not only was I discovering other people that had similar things that I had, but I was also, you know, leading them and helping them, which I'll, obviously helps me recover in my journey as well. So it was very therapeutic. I was kind of part of that. Because I was going through a lot of the same thing, even though I was facilitating it. I'm also a part of that group, you know, telling my story and feeding in with others, the same similar stories that they have. Yeah,
Cynthia Ryan
yeah, I can, I can say, from working with all of the Vita support groups, there are some that are led by a patient, some that are led by a healthcare professional, and some that are led by a team of a patient and a healthcare professional. And I think that there are that all of those combinations work, there are certainly benefits to you know, a patient who, who can share their story and has, you know, experience or has developed just by leaving the support group experience facilitating a group, which, you know, is is actually kind of key to make sure that, you know, everybody gets to participate. But I think the healthcare professionals bring a lot to because patients come with questions that they want answered and and, Sarah, I want to ask you about that, you know, what, you know, as a health care professional, what do you feel like you or other healthcare, vestibular health care professionals can bring to a support group? And, you know, what's your experience participating as someone who treats people with vestibular disorders because it's a different role than being a healthcare provider?
Sarah Conover, PT
Oh, for sure, it's a different role. And it's easier as I've gotten more experience, facilitating for sure. It was, it is definitely something you have to work on to be effective in the facilitators role, because as a clinician, you, your role is to find the solution and implement, you know, assess and treat. And the support group is, you know, the, the the goal is that everyone is heard and feels supported and, and has their needs met for coming back on that particular time and it doesn't necessarily mean that that everyone has to talk the same amount, you know, sometimes People will just not, you know, not want to share quite as much as others, although that's, you know, that's a challenge. Because, you know, the in facilitating groups, you know, you do want to make sure that even the quiet person has an opportunity to, to share, we as clinicians, you know, we, I have heard the stories of 1000s of patients with the similar issues. And, and so something that I think as a clinician I can bring is that I know, the vast variety of symptoms, complaints, experiences, so, whereas someone who hasn't heard all those stories, you know, doesn't have that. So that's something that's a difference between up here and a clinician facilitating. Yes, we can answer questions. And that can be helpful as well, you know, identifying and explaining the vestibular system, and we know, the, the medical sort of team and, and how the medical system works, so we can guide and explain those, those questions. So those are some of the benefits that a health care provider especially one who has been experienced in the, in the field for quite some time Can, can bring, but I don't think, you know, I don't think it's essential to a support group, by any means, in fact, like, I know that I gain a whole lot more from go going to support groups then than the than the folks that are attending the support groups. I learned so much and I'm, I'm encouraged and that's also my style. I, I like I've have a strong philosophy of, of optimism and, and mindset, it you know, when I work with my patients and clients as well, and that's why I have a support I have a Facebook group that's over 2000 people in my Facebook group and I created it because I wanted some I wanted to control a bit that the conversation into a positive conversation, because it can some some venues can be can drag people down. So it's really important to stay positive.
Cynthia Ryan
Yeah, that is really hard, actually. I mean, I hear from I hear from people and I've seen on the, you know, the online forums, some people say, this group is just too heavy and often it's because Well, everybody is different, but also people are in a different place in their recovery. And sometimes when you're very early in your recovery you're in you're going through the grief process, and that's really hard and it's you just want someone to to hear and you know to listen and validate and on the other hand so so it can be really hard when you have a lot of sad stories being shared. And I and
Sarah Conover, PT
I don't I don't think I maybe I didn't present that I don't I certainly would not want someone not to share a sad story I didn't really mean sadness I meant or grief Absolutely there's room for that we have to hold space for for that and then absolutely Bentley been part of of my experience with these groups but but more than negativity that's kind of what I'm talking about. There's there's some negativity that just doesn't have a place in a support in a support group and
Cynthia Ryan
yeah, Doctor
Kimberly Warner - Unfixed Media
Yeah, I the first experience I had with the dizziness and support group even though it was more of a chain of emails, it was through the MdDS foundation and it was very clumsy kind of forum I guess. And it was a downer full on downer and there wasn't anyone facilitating it. So in it was very much have like, this is miserable. I hate my life. These things don't work. I've tried that this doesn't work. And so I do think you're right there there is a place for you Yes, there's a place for grieving. And there's a place for facilitating the conversation so that it doesn't just end up being a cycle of nothing works and your life is over. Yeah, actually, I think that's a good place, because stories help us all. If there's anybody that's listening to this podcast today, that's like, oh, I don't know about support groups. Maybe this isn't for me. And I think sometimes just hearing how one person was impacted by this experience can help. So David, I want to know, and you can share anonymously, but is there anyone that you can think of our story, you can think of where someone was impacted by your support group?
David Morrill
Yes, I have several, but I'm gonna stick with one. When I first started my online support group, a individual came on to my group, one of the first sessions I had maybe the second or third, it was it was in the beginning, she was presenting from her bed, she was in bed, she couldn't move out of her bed, she was at the end of her rope, like Sarah was talking about. And she was just, she had enough she couldn't go on, she couldn't do anything else. I encourage you to stay with it through with the other participants in the group and myself. We encouraged her to go on. And on. And on, she did, she finally got out of the bed. And she was sitting in a chair next time. And then finally she got out of a chair and she was walking eventually. And, and to this day, she's still in my group. And he's a big part of that group. Because she spent she's spreads a lot of positivity, like Sarah was talking about, we need positivity, she spreads a lot of positivity, and she is a leader in the distributed community. So from in the bed, not doing anything to life's over to a pillar about vestibular community is probably my, the best story that I could give you from a support group standpoint.
Kimberly Warner - Unfixed Media
That's amazing. Wow.
Cynthia Ryan
Yeah, absolutely. Absolutely. And, Sarah, how about you? Do you have any stories that really stand out for you someone that really touched you that benefited from participating in your support group?
Sarah Conover, PT
Well, I can think of a lot of a lot of situations, a lot of people, one similar to David's, and I can talk about her, but you know, I want to say that, my guess is that people that have been impacted more than we ever will know, you know, there's probably just many, many cases of just the one little thing that someone took home and made it, it made a difference or, or just a little glimmer of hope that kind of kept them moving and in the right direction. So I think that happens all the time in support groups. And it may not be like a story of, you know, here to like here, but the person I that sort of came to mind when you ask that question was a person that I met in, in April of 2020. She is not in, in Ohio, she's, she's in a different state than I am and she was just so scared and so so hopeless, you know, just thought that her life really had come to an end. She had been diagnosed with three PD. And so she ended up came faithfully, she ended up we, I coached her in I have a coaching program. And she went through that program with me, and then and now she's at a point where she is she's still coming to support groups, but she's also helping me with, with a part of, of what I do with with my coaching clients, so she's, you know, part of my team, and, and she's, you know, she's, she's got a purpose that she thought she had, you know, lost her purpose in life. So, that's, that's been a real, meaningful story.
Cynthia Ryan
Yeah, not to be overly dramatic, but support groups can be literally life saving. You know, I mean, there are people who are going through challenges that make them question their their sanity and whether they want to live. And the you know, the the the support and validation and compassion and love that, that the other people in the support group provide can be their lifeline.
Kimberly Warner - Unfixed Media
Yeah. And I don't think it has to look like that person is always participating. I'm reminded of the story of this again, going back to the Dougie Center, this is just the sweetest story. And I'll tell it really briefly, but there was a little boy who lost a parent. And for a year he was nonverbal in the groups, he never communicated. But facilitators were worried about him not thinking he was getting anything from the groups, he would always go to the corner draw his little black, black and white paintings, it was just like constantly black and white, black and white, they had all sorts of different colors there for him to use, you only wanted to use black and white, a year of that. And then one day he marched in, and he went over to the paints, and he grabbed every single color, and went into the other room and splashed them on the walls. And it just like, everyone was just goosebumps, because they knew, Oh, something was happening to him over this last year, he was absorbing the love and the compassion and the solidarity. And he was ready to express himself differently. So I just, I wanted to share that because sometimes I think people think, Oh, I've got to share, I have to participate. And sometimes it's just enough to be there. So I'm curious, David, from all of your experience in virtual groups, in person groups, online forums are so many different formats. What do you think the pros and cons of all these different platforms are?
David Morrill
That's great question, Kimberly. Yeah, so all I think all three of these all fourth, three of these platforms are useful and, and useful in, in out there in the world. But there are differences. So the in person group, and Sarah runs in the particulars, I used to run an in person group myself as well. And I think those are more community based. So most of your community comes out there, maybe your neighbors, your friends, family, those are in those groups, I think meeting face to face has a lot of value. Because you know each other a little bit more, if almost, you can always reach out and touch people. And it seems real to a lot of people. The inverse of the in person group is geologic, you know, problems with how far apart people are, you know, in using an example, I started in Maine, and it's a very rural state, and is about a million people, but it's a huge state. And people would have to travel for miles to come to one support group. So it wasn't very feasible to have support groups all over the state. So we go into the on the virtual one, the online groups that we started, I think we talked about it a little bit earlier that we started, actually, before COVID hit, and we were ready to go when COVID came because we already were virtual. I think it came from an idea from our community support committee. With Cynthia and I have both gone, that we could we felt we could reach more people, if we could do it online for a few reasons. Now, do you know geography is not an issue anymore. So my group I can host people from all around the world. So that's not an issue, we took that barrier out. Some people have problems, especially the stipulations getting out of the house driving, I couldn't drive for four years after my stroke. So I couldn't attend an armed group in person, unless somebody were to drive me or take me there. So, you know, those are some of the barriers that are helpful for the virtual online groups. And then we go into the next one, which is like the Facebook group we talked about, those have benefits. And it cons as well. You know, I think Sarah alluded to it, sometimes it can get a little dark. And people get, you know, frustrated. And there's a lot of negativity in the, that is a definite problem sometimes. But the thing we talked about a lot, especially in, you know, like we talked about in our community support community. If you go to Facebook, on my particular group, we have over 20,000 people on that on that page. So you can virtually go anytime a day or night, and you're probably going to find somebody else on that group that you can talk to the drawback from a Facebook group versus the actual online group is it's not in real time. So you may ask a question, and you might get the answer, you know, a minute later, or you might get it three days later. So it's not instant gratification, whereas the online in person group, you're right there, you're talking about, you know, things and you're working out things as you go. So, those are the three different groups. They all have their challenges, they all have their, you know, place in the community. But I think you know, if people can put it all together and you can Use, I think the more pieces of communication that we have to help patients understand this disorder, I think the better off we are in the long run.
Cynthia Ryan
Absolutely. That was a perfect comparison of those three different kinds of groups. David, thank you, Sarah, I know you've lit all different. Three different kinds of groups also in person, virtual and Facebook. Do you have anything to add to that? Gosh,
Sarah Conover, PT
it really I was trying to think of something to add you did such a fabulous, comprehensive pros and cons. Yeah. It's great that we can support folks in in all three venues.
Cynthia Ryan
David, I know that you you know, as our as BETOs, community support coordinator, you mentor, a lot of support group leaders, especially new support group leaders, what, what challenges have do you think others have faced or have you had in helping people to get a support group going?
David Morrill
Yeah, I think the biggest issue is, a lot of times people don't feel that they qualified to do a support group, they feel that they have to have, you know, some type of credentials or lead a support group, or actually even, you know, have a clinical definition behind their name. And I'm here to tell you, you don't have to have any of that you have to have what I used to tell my support group leaders that are wanting to be support really, is you have to have a little bit of empathy. And you have to have a good ear and good skills to understand people and communicate with people. And that's what I usually tell our new support group is it sometimes, you know, it's difficult to lead a group of people at especially, I know, Sarah does online group, I do an online group. And if I get a lot of people on one night, it's very challenging, because you're trying to get everybody to talk, like you said, we want to give everybody a chance to talk. But if you have a lot of people on that, sometimes that's hard. And what some of my advice to my support group leaders is, you know, don't get frustrated with that. And conversely, I think Sarah alluded to it earlier, don't be frustrated, especially the new groups. If you only have one person or two people show up that night. It takes a while to build that. And like Sarah, so well said, and that was my monitor the whole time. If I can help one person, you know, that's a great thing, right? So that's what I always tell my support group leaders, when they initially start, nope, have a little patience, that group will grow. Once people get the word out there, we have, you know, a few new groups out there now. And they're doing very well. And you know, I always did, and I always tell them to make sure that you give it some time, don't just, you know, not three months, and it's going to be it's going to take a long time to build those relationships. And once you build those relationships, I have people I'm sure Sarah, does that come back week, month, after month after month, and I've had this group going, I don't even know how long, maybe seven years, eight years, and some of the same people are still in that group. So, you know, those are the types of things that I would tell a new support group leader, just you know, if you have those skills, you can do that you can do this job. And, and the other thing is I tell them that that beater is here, I'm here to support them, if they have, you know, if they have some questions, or if they need some materials, we're here to support them at via so it's really a self starting situation. So if you're thinking about starting a support group, online or in person, you know, go ahead and get in contact with me or beat out and will definitely help you along the way.
Kimberly Warner - Unfixed Media
So I think I know the answer to this question, David. But I want to know what what would you tell a patient who is just starting out on their journey and feels like nobody understands them?
David Morrill
Oh, yeah, I would tell them first of all, that I know how they feel, because I can tell them that, because I've taken that journey. And sometimes it's a long journey. But I would, but what I always tell new patients and patients that are just coming on board is one, it's really important to educate yourself. On your disorders. You don't have to be a doctor, you don't have to be a therapist, you can go to a great website like the cibula.org and you can learn a lot about your vestibular disorder. So I always encourage people to learn about their Vestibular Disorders educate themselves, that way they can more logically talk to the physicians and the therapists. You know, Hey, I saw this on a website. Is this something I can do? You know, and sometimes the healthcare professionals will listen a little bit more if you if you're using the same words, and you're using a lot of the terminology that they use. So you know, does one thing is that first of all, educate yourself in find some, you need some support, find it, whether it be we have a peer to peer program here at the Vita that will take an individual and they'll help you know one on one or we have our support groups. And as we, as we speak, we're trying to build that support group. So we have lots of mouth, and we have a fairly good amount now, and we've been building them. But you know, one of the goals is somebody to be able to go on that Vita website and say, oh, there's a support group. And you know, they need support right now, maybe that groups tonight I had had, several people tell me that, they said, Hey, and I went on beta site. And I saw your support group. And you were meeting tonight when I saw that, so I joined your group, because of that they needed support right now. You know, they, I tell them, they can always call leader, but a lot of times you need it right now. And one of the things I always tell people, like when the support group is starting, especially the online groups, the in person ones are a little different. But the online group, sometimes that person only needs support for maybe one or two months, they're not always there for the long term. So and that's not a bad, and if we can give the people that support they need at the time they need it, that may get them over the hump. And they may feel better about themselves as in forward so that tell people you know, especially with that don't be frustrated, you see somebody for a few months and gone. Sometimes they may come back in a year, you know, those same types of things, are some of the things that you work out in an online support group. Wow.
Cynthia Ryan
Yeah, absolutely. And, you know, to add on to that, we would like to develop more support groups, and I have this, this vision of this tubular clinics across the world, all having a support group, so that, as you said, no matter where you are, and what time zone you're in, there's there is a support group meeting and a support group available. Sarah, what would you say to other vestibular health care providers who maybe have thought about starting a support group? Maybe they're reticent for one reason or another? What do you think the benefits are for a health care provider to provide that kind of service to their patients?
Sarah Conover, PT
Oh, I think the benefits are immense, both for like you said, What a fabulous vision. If you've got a clinic, and you're providing that emotional support as well, and that educational support, I mean, it's just going to ramp up the excellence and your outcomes in your clinic with your patients are just going to explode because we are whole people with, you know, emotional and mental needs, not just the the rehabilitation needs. So it's, it's and I think, as a whole, the vestibular profession is, is learning more and more, you know, when I started, right, took my first vestibular course back in the late 80s. I mean, it was just hardly anything. And now it's just we just know so much about how, how the vestibular system encompasses our whole body, you know, it's connected to our emotions, even. So, I just think four to have a support group in your clinic, just will, I mean, it will make it would make that clinic the, the gold standard in that area for sure. Professionally, like, as a clinician, it has been involved in this way has greatly improved my ability to listen to, to perceive different points of view. My, my coaching skills have improved in this in with being this in this facilitating kind of role. I think it exposes you to a lot of different sorts of vestibular issues, a lot of different, at least the online groups. I've got, you know, people that are coming from Canada to the group, you know, so different areas of the country. It you just learned so much. And I think it broadens your ability to be an excellent clinician. So that is, so yeah, do it. Start a group.
Kimberly Warner - Unfixed Media
It sounds like it would be a great model for not just vestibular healthcare practitioners but any health care practitioner so that they could really see their patients in a hole, a much more whole perspective, the spiritual, the mental, the emotional. So I'm putting in my vote for not just vestibular healthcare professionals, but all healthcare professionals for running support groups.
Cynthia Ryan
And I want to just repeat what you said, one of the things you said, which is so important is that improves clinical outcomes. You know, it really is, it's not just oh, it makes people feel better in it, actually, you know, the having that, you know, that emotional support gives you the ability to deal with to better cope with the physical challenges that you're going through, and you will, you will recover more quickly.
David Morrill
Yeah. And also, I wanted to add, Natalie, who was a physical therapist, she Co Co hosts my online group. She says the same thing is you Sarah, she loves coming to these groups. It helps her as a clinician, and it helps the patients that she touches. So yeah, I definitely can see that from from the your point of view. And that's exactly what she's telling me every time she comes. I thank her so much. I know you guys are super busy. And you have a huge workload. But she joins me at seven o'clock once a month. And I really appreciate the input that she does.
Kimberly Warner - Unfixed Media
Amazing what an amazing conversation.
Cynthia Ryan
I want to thank both of you not only for joining us in this conversation, but for all you do to support vestibular patients. I mean, you, you you're the you know, the the rock of of our of our organization and providing peer support. providing support to vestibular patients is, is so important providing the support where they are when they need it. So thank you so much for all that you do.
Kimberly Warner - Unfixed Media
Absolutely. Thank you so much.
Cynthia Ryan
Thanks for tuning in to ICU this month. We
Kimberly Warner - Unfixed Media
hope this conversation sparked a new understanding of the vestibular journey. And for all of our patients out there, leaves you feeling just a little more heard. And a little more seen. I see