Low Vision Support Groups

Hadley Presents

Low Vision Support Groups

Presented by Ricky Enger

Ricky Enger: Welcome to Hadley Presents. I'm your host, Ricky Enger, inviting you to sit back, relax and enjoy a conversation with the expert. In this episode, support group leaders Judy Davis and Lynndah Lahey are joined by director of community Marc Arneson to discuss low vision support groups. I am so glad you guys could join us. It's always really, really fun to have kind of a panel discussion because we're getting the viewpoints of not just a couple of people, we actually have four of us in the room, so I think it's going to be a great time. Before we get into talking about what each of you does with your support groups and just how important those things are, let's do a little intro and find out a bit about each of you. Let's start with you, Lynndah.

Lynndah Lahey: Sure. Happy to. Bottom line is I have quite a varied background. I knew nothing about low vision support groups or anything like that when I joined Wheeling Township. So, this is the smallest portion of my job in terms of responsibility here. The Township is a small form of local government. Marc knows firsthand that it is the single most favorite thing that I do.

My background is varied. I spent many years in communications, marketing and sales. Took some time off, living out of the country, and then when I came back decided that I wanted to start a new chapter in my life and went the non-profit route where I was an executive director for a non-profit and then came here and joined as the Director of Senior and Disability Services. On the first day I started, they told me that, "Oh, by the way, you have to run a support group." And I said, "Great, what's that?" And they said, "It's called VIP. It's the VIP low vision support group." So, I literally kind of got dropped in headfirst, and here we are five years almost to the day that I started.

Ricky Enger: Awesome. And how about you, Judy?

Judy Davis: I actually have retinitis pigmentosa and I was diagnosed at a fairly young age. But it wasn't until I was in my twenties when I moved from my familiar area in Indiana out to Pennsylvania, that I realized how much I was relying on familiarity to get around rather than my vision. So luckily, I found out pretty quickly that there was a support group in that town. I started attending the meetings and I kind of got involved with it in that kind of progressive way that you do sometimes with organizations you get involved with. I started making phone calls to members to tell them about the meetings, and then I started arranging transportation and then I started doing program directing, and it just kind of built from there. I was in a situation where I moved. So, I've actually lived in four different states, so I've been involved with different support groups. And so, I think that has introduced me to different goals of different groups, and I've learned the good and the bad from those groups. So, I think that has really influenced how the support group here is run. My education is actually in library science, so I'm one of those organized, detailed people, so I think that helped. For me, having vision loss myself, that first support group I got involved with, it just changed my life. Being with other people with vision loss, that is just so key when you're on your vision loss journey.

Ricky Enger: Yes. Just having somebody who's been there and knows what it's like or is going through that at the same time as you, I think you're right. It's incredibly important. Marc, as part of your job, you actually get to interface with a lot of these support groups. Why don't you just start by talking a little bit about that, and then just head right into your questions. Because I know you've got a lot and this conversation is going to be so informative and so important. So, I'm looking forward to it.

Marc Arneson: So, as you mention, my title here is Director of Community. I always like to share that I think I have the coolest job in the world. What I get to do is just be a part of these different groups and just share about Hadley and things that we're doing, and just do a lot of listening and understand other ways that Hadley can be even more helpful. And I've had the pleasure of firsthand being a part of both of these groups, Lynndah and Judy's groups. And I am curious, can you tell me just a little bit about your groups, maybe the number of people that have joined them? How often you guys meet? What that typically looks like each time you guys meet?

Lynndah Lahey: This is Lynndah. Unlike Judy, I don't have any vision loss. What I find really interesting about this group, my group in specific, we have about 45 members. When I joined... I started here in 2016. The group itself was founded in the year 2000, sort of organically, much like Ricky's probably started where someone in the community raised a need to someone here in this local government office, and I'm not quite sure exactly how it started, but it did, and it's been going continuously, continuously. So obviously into its 21st year, which is really exciting. The group hovered around 20 or so for many years. People came and went and so forth, but there are a few core members who have been in the group for well over a decade, and that in and of itself helps.

What I specifically find so interesting about our group is first of all, a large group. I love the fact that it is so varied. I've got group members from the age of 40 to the age of 95. I've got group members who were born blind and group members who were just diagnosed last week with maybe macular or glaucoma. Several people who use guide dogs, several people who use canes. Several people who are still driving, several people who live well out of the township and therefore use ADA transportation to get here. It's so varied. Everything again from congenital blindness to Stargardt’s, to all kinds of stuff. So, a really interesting, varied group. And for me as this leader who stepped into the role, I find that especially intriguing for me. Everybody's needs in this group are very different. I've come to rely on a few people in the group who just have that knack, that knack of being very welcoming or being really attuned to someone new joining the group.

If somebody new is coming to the group, I will call that person in advance and say, "Oh, somebody new is going to join. I'm going to..." Back in the days pre-COVID where we could see people together, I would say, "I'm going to put this new lady next to you." Kind of introduce her to the other people at the table, so I've worked the crowd, so to speak to try and get to know certain people. Obviously, we're not meeting in person, we've gone to all Zoom meetings. The thing that I also find really interesting about our group is that not only does it include people with visual impairment, but in many cases their spouse or their sibling or the next-door neighbor also attends. And I've really had fun with that too. So that makes our group I think, particularly interesting. It's very varied.

Judy Davis: This is Judy, and makeup-wise, we're very similar to Lynndah's. The age range is the same. The vision loss range is the same. Our group is older as far as length and time in existence. If I had to guess, it probably started in 1990 or so, and it started out connected with a Low Vision Center. I joined into it when I moved here in 1998 in North Carolina. And again, I kind of did what I did when I was living in Pennsylvania, I started at a one level and then eventually I got a job at the Low Vision Center, so then I ended up co-facilitating it. And then when the Low Vision Center closed, it's all very volunteer-oriented now, as far as who's helping with it. If I had to guess, we probably have between 40 and 50 members. And when we met in person, we probably had between 20 and 22 attending. Now that we're meeting over the Zoom platform during the coronavirus, we're probably averaging about 18. And the reason for that number discrepancy is... I don't know how Lynndah does it in her group, but we have callers that call our members and tell them what the meeting topic is. And again, pre-COVID, we would find out if they needed a ride and to see if we could help them with transportation. Many of our people never actually make it to the meeting, just that relationship between the caller and that person is all that person wants or needs, I guess. But then we do have a significant number of the people that come in.

The way our meetings run as far as a plan goes is the first 10 or 15 minutes are social time. And it was really great when we could meet in person because we had homemade cookies and we had coffee and we had drinks. Yeah, that just makes that interaction so much easier, especially for the newer people to have that time. And then the next 10 or 15 minutes, it's myself. And then here in North Carolina, they have a social worker for the blind and our county's very blessed with the person we have. And so, she and I take turns making announcements and we both co-facilitate, which I think really helps to have two of us working with it as well.

Marc Arneson: I've actually had the pleasure of being in-person in Lynndah's group, Judy, I haven't, everything has been from a distance with the pandemic, but the interesting thing is as part of my role, I do get to visit a lot of different groups and share about Hadley. And I do hear about the challenges of keeping people engaged, especially when you're online and you're using Zoom and things like that. But it seems, you guys have been able to keep a group consistent and people engaged in meeting together. Is there a secret to that? What is it that you do to help really kind of engage your group? Judy, if you want to go ahead and share first?

Judy Davis: I think part of it is because we were such a well-established group that most people were able to transition in to doing it by phone. We did lose people because of the technology that's involved, which is sad. But I think also we do still have that social time. We have now gotten into more game playing since we went COVID, I think we've played games two or three different times maybe. We've come up with some really good ways to play games over our meetings. And just... I know one of our members said, "All those endorphins from all of us laughing and just having so much fun together just really made a difference."

Lynndah Lahey: I think Judy and I are very similar in probably how we lead our groups. How I approach the group is very similar to Judy's, in that to me, my goal with this group is to be as positive as uplifting and let's have fun. So, we've kind of got this really great rapport going on. Like Judy, pre-COVID, we were meeting in person and yes, the socialization was great, following a basic format, almost identical to Judy's socialization, announcements. I always used to have a speaker when we're meeting in person and then follow up with something funny or poignant at the end. What's interesting for my group is that we generally always had about 35 in person when we were meeting. I'm delighted that I'm still getting anywhere from 20 to about 27 on the Zoom calls every time. The very first couple were really tough because we were all struggling, me included, trying to figure out where the mute button was, how to get the camera in the right place, and now we are all just doing so well.

But what I will say, I had three or four people in the group who just, "I don't want to be on camera. I'm uncomfortable being on camera." And so, I worked with each of them individually to let them know, they can just pick up their landline and call in on the phone. So, it would be just like talking to a friend. I've gotten to know each person, getting to know kind of their strong points, their weak points. And for those that are uncomfortable being called on, so to speak, when we go around the room, I already know that they're not going to want to share. So, I'll just say, "Oh, I can see Suzanne you're here. I know you didn't really want to join in today, but don't forget to raise your hand or interrupt if there's something that you'd like to say."

And so much of it is that knowing each person individually, but being really open to it, so much of it comes down to the personality of the leader. I have so many responsibilities in this job here that I do for the township. This is literally the smallest part of my job. It's the thing that I'm happiest to spend the most amount of... I spend as much time as I can on it, because it is a direct level of service back to the community. And it allows me to kind of give back in ways that I can't in my regular government job. So, because of that, it's an opportunity for me to give love in a group setting and as corny as that sounds, it comes through. And I know the members who have stuck with us really enjoy it. And so, that for me, makes it really worthwhile.

Marc Arneson: I wonder do you, I know that many people at this time are feeling disconnected, feeling isolated, feeling lonely. And I know that having a vision impairment can kind of even add another layer to that. Do you see that people are using your support groups in a way to kind of meet some of those particular needs or challenges that they're facing?

Lynndah Lahey: For me, yes. I think the one thing that has changed or evolved for our group is that over the last year, I've stopped having speakers. Because what I realized pretty quickly is that people when they got onto the Zoom call, they wanted to talk and they wanted to just say, "Oh, so what's happening? Oh, last month, I know you went to the hospital, what happened?" And it truly has become more of what I would consider a support group in a different kind of way, as opposed to here's a speaker that's talking about the latest thing in macular degeneration. And so, it's been a very interesting evolution. I'm finding people wanting to come back for that one-on-one time. And it has also encouraged people calling me outside the group. So again, that's something new over the last year.

Judy Davis: It's a little bit different with our group because when we met in person, probably every third meeting was either a group discussion on a specific topic, or it was a coping meeting. And then the other two meetings would be a topic or speaker kind of thing. One of our members had this great idea is like, "Why don't we just have a second meeting where people just talk?" So, to get rid of that isolation and stuff. And we're actually going to be trying that for the first time this Friday. We will see how it goes. And it was interesting when Lynndah was talking about different people personalities, I actually talked to a potential new person today, and I was telling him how we were going to have both these meetings or our new social time meeting this Friday, our meetings are... That's the second Friday of the month.

And then our fourth Friday of the month meeting we'll still kind of be that same structure where we have announcements, we have a set topic. We talk about coping. This Friday is going to be a free for all. So, I was talking to this man, and he's got a new diagnosis. He is still driving. He said, "But I'm just so scared because I don't know where this is going." And he had a father who basically got a diagnosis and then just sat in the chair and lost his vision, which is just so sad.

So, when I was talking to this person, I said, "Look..." He said, "Well, maybe I'll come to the fourth meeting." The fourth Friday meeting, the organized, detailed meeting kind of thing. I said, "Well, you might want to come on Friday." I said, "You can be a lurker." And he's in his seventies. And it's like, "What does that mean?" I said, "You could just come and listen. And if you find a point where you want to say something, then step in and say it, otherwise you'll get to know the group and start putting names and voices together. And just see when you're ready to step in and share." And that's actually one advantage of doing the Zoom versus the in-person.

Lynndah Lahey: I agree. I think actually this has ended up providing us with another avenue that I would have never thought about exploring had we not been sort of forced to do it. When this all first started, we were all trying to figure out, "Holy cow! What on earth is going on? How are we going to do our jobs?" And no one gave a second thought to the support group. And I kept thinking, "Okay, now more than ever, I got to keep these people together. How am I going to do this?" And what's interesting is that what's come out of this is that in my specific group, I've actually got some people who are attending more frequently who had difficulty to get access to transportation, but they've shown up every month on the Zoom call because of course they don't have to take transportation. So, I've had a few people say to me, "After we go back meeting in person, do you think you could still do a call like this every month too?" So, my goal of course, is to not lose the Zoom, but to add back in the personal meeting.

Marc Arneson: It's wonderful that you guys have been able to maintain these groups and these attendance and the engagement. Do you ever run into members or people who are considering joining the group who are hesitant or reluctant to do so? And what do you kind of share with them to encourage them to consider it?

Lynndah Lahey: This happens all the time where people... It takes a lot of courage for someone either to stop in my office and say, "Oh, I hear you've got a support group." Or to call and say, "My neighbor is having vision loss, and I told her I'd find out about the support group." So, first of all, I'm delighted when people even stopped to ask because that's the biggest thing that they can do is put in a query. I definitely like to talk to the person individually and I like to walk very carefully. I don't pound them with too many questions though. "So, what do you got? When's the diagnosis? How bad is your vision?" I don't kind of go down that road. But just ask them, "So, what are your concerns and what do you like to do? And tell me a little bit about your background. What did you do, or do you do, for a living?" So, I try to get to know that person first.

And then, it's no different than a sales pitch. So then just try to see if we can kind of talk in common and then eventually tell them, "This is what it's like coming to one of our support group meetings." As Judy referred to, kind of being a lurker. I encourage them to come and be a lurker. And if they don't want to participate, I won't put them on the spot. You can bring your spouse; you can bring your daughter. You can come and enjoy the food or via Zoom call, call in on a landline. And then that way you won't even be seen. I try and meet them where they are.

I've also spent countless hours, literally doing one-on-ones with people to help them learn how to use Zoom if that's what they want to do. So, I think that has also helped for some of the new folks. Sometimes they come and they participate two or three times, and then they're gone and that's okay. You can't get everybody to stay, but I think the whole thing is to not make them feel that they're going to be put on the spot. I want them to feel like they're welcome and that I'm going to be supportive for them. If they don't want to come back, that's okay. I've done my best. So that's how I approach it.

Judy Davis: So many things that Lynndah said was just right on, as far as our group too. A couple of things I'd like to add. I have to confess; I am a closet introvert. Every once in a while, it rears up its head and I want to hide. Since I have been involved with different support groups, I have had to reenter those groups as I've moved from state to state. Since I am an introvert, walking into a meeting where there are that many people is intimidating, even though I know that we have that shared ground, but a couple of things I encourage people with, like Lynndah was saying, I kind of explain how the meeting is set up and what's going to happen. I give them a rough feel for the age range and different eye conditions and things like that.

I encourage them to come to more than one meeting because one meeting, that topic may have not been of any interest to them at all. And so, coming to more than one meeting gives them a better feel for the group.

Marc Arneson: And it is so clear for both of you guys that this is not a job for you, but it's a passion and it speaks volumes as to why I think people are engaged in your groups. It's because it's so important to you. I have just one last question. And again, I want to thank you guys just for spending this time with Ricky and I, but if you had to put your finger on the thing that you enjoy most about your support group, what would you say?

Lynndah Lahey: I think for me, from a selfish point of view, it's an opportunity that allows me to give from the heart. I work in a government job. Generally, government workers aren't giving from the heart, they're doing their job. I run transportation. I run all kinds of things, but this opportunity allows me to give. I think getting to know each one of the people in the group, it gives me such personal pleasure that I think it's very easy for me to try and grow the group because I just am emotionally so involved in it. So, like I said, it's a real labor of love for me, for sure.

Judy Davis: For me, because I do have a vision loss, there is just nothing like walking into a place where you are surrounded by people that you know understand what you're going through. Even though I've had vision loss for many, many years now, it's just like coming home. It's just that sense of love and camaraderie and humor and just that's it for me. Because my family is not where I live, but my support group is my family because that is where I live.

Ricky Enger: That's such a perfect summation. I love that. And this whole conversation has been amazing because as Lynndah pointed out in the beginning, even though each of you has a completely different background and you're coming to this from different places, so to speak, there is just that common thing of wanting to bring people together and recognizing that people do need support and they do need that camaraderie and sort of that bond of being in the same room together and knowing that, "Hey, the other people here have experienced things that I'm going through." Or, "I actually have some advice to share for this person because I've been there." That kind of thing. I think it's wonderful. As we wrap up here and again, I really, really appreciate all of you for joining. Is there anything that we didn't touch on that you would want to say to someone either who's thinking about going to a support group and just hasn't yet, maybe they're thinking about starting a support group and they just haven't yet. Any final thing that you want to share?

Judy Davis: What comes to mind is to be brave. It's so hard when you have a vision loss, especially when you're new to it because I went through years and many people do, where we try to fake having vision loss. And luckily when I made that move to Pennsylvania, I could no longer fake it. And so, it's like, "Oh my gosh." It's so much easier to tell people I have a vision loss and that is why I need help or that's why I didn't wave back at them. And so, getting involved with support groups, it helps you increase that courage. If you start by being brave and going to that meeting, your courage increases because, like you were saying, Ricky, you find people that have already conquered some of those mountains or those mole hills. And you can do it if you know that other people have done it.

Lynndah Lahey: Oh, ditto. I couldn't say that better. And coming to a support group as a leader in a completely different capacity as Judy, it is that sense of, "I want to make sure that they feel brave." And so, I try and bring as much information to the group and try and help them find the resources that they need because it's so rewarding to watch somebody gain that courage and that confidence. And there's just nothing better. So again, Judy, you hit it spot on. It helps you be brave. And ask for help, whether it's help to start a group or help to go to a group. Don't be afraid to ask, ask for help.

Ricky Enger: Thank you both so much for that. And thank you for joining us here on the show. I appreciate all of your time and all of your wonderful information. Thank you.

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