Taking the Lead

On this episode we talked with client Karen Leonetti. She opened up about an obstacle she faced and how she overcame it. Karen shared some great advice for anyone adapting to vision loss.

What is Taking the Lead ?

Leader Dogs for the Blind empowers people who are blind or visually impaired with the tools for safe and independent daily travel. Our goal is to educate, advocate, and share real life experiences of those with blindness. Come learn, laugh, and grow with us.

Christina: [00:00:00] Welcome to the Taking the Lead podcast where we empower people to be unstoppable. I'm Christina Heppner with my co host Leslie Hoskins and Timothy Cuneo. So Timothy was just telling us right before this that he's got a little research project that he's going to be a part of. Timothy, tell us what that is because it is so interesting.
Timothy: Yeah, the college down here, Georgia Tech has reached out to me, uh, and asked me if I would come down and try a guide dog that is robotic. And, uh, so I'm going to go down there and try a robotic guide dog for a couple of hours. And it's going to be kind of interesting to see what this is going to be like.
They want my ideas about it and what I would change and all that good stuff. So it's going to be kind of cool.
Leslie: That is so cool. Yeah. Will you be taking Glacier with you? be. I would love a picture of the two next to each other.
Timothy: Yeah. I'm going to see if I can get a picture of it, both of them together, but yeah, she's going down.
They want her down. They want to meet her. Yeah. So I'm going to listen to the podcast. [00:01:00] Oh my gosh. And I can. I think that's how they reached out to me. And, uh, so, uh, yeah, I'm going to take Glacier down there, but, uh, I, I, my personal opinion of it, I think the real deal is better. I've got a real guide dog, but we'll see.
We'll see what it's going to
Christina: be like. I am so excited to hear about this. I mean, technology is, it blows my mind to be honest, like. the how rapidly it changes and now they're testing this stuff out. Now, I mean, there's always flaws with technology. Let's be real. How many times we all yell at our phones for, you know, not loading fast enough or computers or, you know, virtual meetings now or all that stuff.
It's so cool that it's changing so fast, but it's going to be so interesting. I even wonder what it's going
Leslie: to look like. Like, we'll look like a real shape of a dog. Like, like, have a you. Yeah. Put a harness on it. I
Christina: don't know how it's going to work. I have so many questions. Why didn't they invite us?
Leslie: I want to
Karen: go.
Timothy: Well, I don't know. My [00:02:00] personal opinion, I'm going to be very open to the idea of it, but just knowing what Glacier does for me and the dogs always there showing love. How can a robotic dog show love and
Christina: concern? The emotional connection.
Leslie: You know, this is a question that we get all the time. Like, do we think, you know, robotic dogs or robotic anything are going to put about, put us out of business or like self driving cars and things like that.
And the reality is, is just what you said, you know, guide dogs provide companionship. Sometimes that's the number one reason why people get a guide dog is for the companionship. We know they're also a mobility tool and incredibly intelligent and helpful in providing safe travel. But a lot of the times it's just having somebody there with you.
And I don't know that a robot's going to be cuddly as much as. That's
Christina: true. How do you, how do you pet a robot?
Timothy: Put that cold metal in your bed with you, or if you're on a plane, like when we had that flight that lasted 14 hours, a robotic dog, it's not going to show you, you know, when we were having a struggle, Glacier would get up and I could pet [00:03:00] her and she would calm me down and I would calm her down.
And so it's just that emotional bond between you and your dog. And if that's gone, it's just you. It's just you and this. Mechanical things. So we're going to
Christina: see. I just don't know. I guess the one thing you wouldn't have to worry about is like feeding it in
Leslie: park time. I know. Yeah, you got to charge it.
Christina: I got to go plug in my dog. That's what happens if the battery dies. What happens if the
Karen: battery dies in
Timothy: the middle of the street?
Leslie: You'll have to have like a portable huh? You're charging back. Oh my gosh. I just have all the questions. Instead of poop the diaper bag, the diaper bag
Karen: would have. The diaper bag would be very heavy.
I'm sure. Yeah.
Christina: I gotta go plug my dog in real quick. Oh my gosh. I just
Leslie: have so many questions. Yeah like, you know, intelligent disobedience when, you know, we've trained our guide dogs to. Disobey, basically, if they see danger, you know, for example, if you're ready to cross the street and you say, you know, glacier forward, but glacier sees a car's coming that maybe you didn't hear.
[00:04:00] I mean, how do, I don't know how a robot would do that, right? Because glacier's making that conscious choice to not do what you've asked it to.
Christina: And what about like weather? Because, you know, you have to travel in rains. I mean, not snow for you. I mean, sometimes there's snow for you, Timothy. Very rarely. But would it, you know,
Leslie: glitch?
I just think of like the Jetsons. Like, that's my idea of like,
Christina: I kind of, I really want to see this. I, Timothy, you're going to have to take all the pictures. All right. Well, I'm going to try or even take a video or something.
Timothy: I need to know. She'll try to do some stuff for us. All right.
Christina: That's so cool. All right.
Yeah. I just, I have too many questions.
Leslie: That's the problem. We want to be involved in that research, but that is really awesome. And honestly, right? It's like growth for the field. Yeah. People are researching ways to make people's lives who are blind or visually impaired better. I think it's awesome. Yeah.
I'm happy that you get to contribute to that.
Christina: Well, yeah. And I think too, like some people don't want a dog or don't like dogs. So this could be an [00:05:00] alternative for people who want more than a cane. But. I don't know why you put in a lot more than I get. I'm just kidding. I know, Leslie. I knew you were going
Leslie: to say that.
But, hey! You know what?
Christina: Yeah. Technology is cool. It is. And it's ever changing. And. It will never take over the world. That's my say.
Leslie: Okay. Oh, goodness. Okay.
Quite the statement there. It won't though. All right. We'll have to share her story. Yes, our guest
Christina: is calling in from Black Mountain, North Carolina, where she lives with her husband, Danny, and leader dog, Shanti. We were all able to meet Karen Leonetti and her husband at last year's Bark and Brew, and we are so excited to learn more about her.
Timothy: welcome to the show. I hope you and Dan and Shanti are doing great this morning. So not many people's heard your story. So let's just, just jump right into the pool. Can you tell everybody what happened tragically for you to lose some of your vision?
Karen: Yes. Hi, [00:06:00] Timothy. Nice to be on the show. Everybody.
Thank you. Yes, when I was 30 years old, I had a six inch tumor on my heart, non Hodgkin's lymphoma, stage four, and my treatment was a bone marrow transplant, which I was in isolation for 144 days with Danny. He was my caregiver. I had 15 weeks of chemotherapy, And adjunct when I got back from the cancer hospital back to Sarasota, where we lived for 30 years, I had 15 days of radiation and it was the spot radiation on my heart, which they did not cover my eyes.
So I have bilateral optic nerve atrophy in both eyes. So basically, I have 5 degrees of vision in each in each eye. So I don't see people approaching me from the right at all. Um, and I fall a lot before I got my shanty. I fell and broke my wrist. I fell and broke my shoulder. And then, uh, you know, I [00:07:00] knew it was time for a guide dog.
But yes, that was that was tragic treatment. It was barbaric treatment. The bone marrow transplants are so different now. And I believe I was a guinea pig for, you know, the people who went after me. So that was, that was how I lost my, well, it didn't start right away. It's um, probably in 2008 is when I really started seeing a difference.
So I think it gradually happened. Did you
Leslie: know that vision loss was going to be a side effect of that
Karen: treatment? So, when I was in, you know, the admitting process, Danny had to sign oodles and oodles of releases. Blindness, deafness, heart attack, and death. And so it was what we signed off on. So, It was the six inch tumors inoperable and it was attached to my heart.
So we really had no choice to do all that
Leslie: treatment. Yeah, that's crazy. I'm so sorry to hear that. And so, you know, you lost your vision. Obviously you've persevered and you're an incredibly strong [00:08:00] woman. What happened
Karen: next? Well, when I got out of the hospital, my husband was saying, we'll build your school, we'll build you a school.
So we had a preschool and it was a wonderful. Holistic preschool. We had, I was a preschool teacher for 20 years, an owner. And, um, it's when we closed down the school to move to black mountain that I really realized my vision was really failing because the children would help me find things. I said, I found, I lost something.
Can you help me find it and stuff? So that was, that was nice. But when we moved into a different state after living in the same home for 30 years, that was kind of difficult. So I, I pursued the whole idea of getting a guide dog and I had, um, our North Carolina, um, division of the blind came and trained me.
I didn't at that point know about leader dog. Um, and so it took several months instead if I had gone to leader dog, it would have been a week. You know, that would have been [00:09:00] quite a difference for me, but, um, um, then I applied for leader dog. Thank you. I guess it's, um, what, six weeks you have to have your cane before you can apply for leader dog.
And, um, so the, that application started, Danny filmed me. He, he did everything you need to do. We, we watched all the videos, we did everything. And, and then we waited for our shanty girl to arrive. She was a home delivery. We requested a home delivery. And then. With the pandemic, with the campus being closed down, it worked out beautifully.
So her trainer, Kevin, came down to Black Mountain with her and trained me for 10 days in my town. So that was amazing. Just an amazing, intense 10 days. And we worked really hard together. It was It was a lot to learn, a lot to learn. So, home
Christina: deliveries are usually shorter than when people come to campus.
Campus is about three weeks, so you said you had ten days, but that's, you know, in your area, [00:10:00] in your hometown. So, what was it like, I know you've come up here for different events, we met at Bark and Brew, so what was it like the first time you actually came to
Karen: campus? It was mind blowing. It truly was for both of us.
Just to walk in. those doors because Shanti has changed our lives so much so deeply. And it was quite a benefit. We feel to have that home delivered because we could pattern with our areas that we went to and things. But going up there where she was trained and, um, just to be around all of you and the energy of the whole place, just Just blew us away.
It was fabulous. And then we wanted to come back for bark and brew because we just wanted to be in the town where she was trained and go to the coffee shop. But I bet she went as a little puppy and it just it was terrific. We got to meet up with her puppy raisers when we were up for the summer event at the campus.
It was. over the top for [00:11:00] us.
Timothy: So, Karen, you did home delivery. What are some of the advantages do you think there is for having a home delivery in your own town? Well,
Karen: Timothy, I think the biggest thing is just that we can pattern going to the coffee shop. I go to going to the health food store. I go to, um, walking around the lake and, um, just having Kevin be with me in my surroundings, I think is is wonderful.
It was definitely a trade off for being on the campus because I know you and I have had conversation of this Timothy that, you know, that campus experience is so amazing and I did miss out on that. Um, but I think having, you know, the home delivery was was also beneficial for me because we live in a little teeny tiny town.
It's like 8, 500 people. So I think it worked really well. And we, we have warned Kevin, we have a lot of dogs in this town, so we have to make sure to have a non distractible dog. And he says, I'm glad you told me that. [00:12:00] So it was, it, I really loved it very much. So you
Leslie: and Shanti have been working together for a while now and have been through a lot.
I know there's a kind of an event that you wanted to share and talk about and how you, Shanti and Danny all made it through.
Karen: Yes, thank you for this opportunity. It's very important to me. Um, so 30 years almost exactly. I was supposed to be celebrating my 30th anniversary of being cancer free. And my 60th birthday.
But instead, on the day before, I was on the thoracic surgeon's table talking about open heart surgery. So it seems that 30 years prior that radiation and the chemo and the bone marrow transplant damaged my heart. I had an aneurysm on my heart. It was, um, five points. 7 is, I was 5. 7 and 5. 5 is operational.
So it, it [00:13:00] just was, it just blew my socks off. So this major year of celebration I was looking forward to, um, ended up with a open heart surgery. And thank goodness I had a doctor, a family doctor who, who heard a murmur. But the way he said it just really made me alarmed. And we went for testing and seven tests later.
We were ready for this. And, um, but I, I, I wanted Shanti with us. Many, many friends were like, we'll take care of her for you. It's like, no, no, no, this is, this is a life team. We, we don't separate each other. And, uh, so we called the director of nursing and we said, how could we, how could we, um, You know, work this because I, I know that she's allowed everywhere, but in the operating room.
And can she come to, you know, the recovery room for six days with Danny and I and, and we had a long [00:14:00] conversation. It was probably four hours long and we spoke on all the plate, all the different. Places where she would be in the room. They didn't want her near the draining tube. They didn't want her near, you know, so we had all crystal clear.
We went in and she showed us the room we'd be in. It was amazing and she was very, very happy that we self advocated. Um, and, um, so we, we just got in there and, and learned what it's going to be like. And so Shanti was all ready. We were all ready. And so I remember calling Kathleen because we were supposed to do an event for leader dog up in Maryland and Delaware.
And I was in tears and Kathleen is your event, you know, the lions coordinator and, um, And I was in tears. And for one second, guys, I have to say, I was scared that Shanti would be taken away from me. And then Danny said, Oh my gosh, Karen, [00:15:00] this is leader dog. Are you kidding me? If anything, they'll send somebody down to help take care of her.
And, um, I just thought this whole procedure was going to be eight weeks long. And. When I went for my testing, I said, you will be up and walking in one day. So we called, yeah, we called Kathleen and she said, let me call Kevin. Kevin called us for trainer and my trainer and he walked Danny through everything.
He said, keep her harness on at all times in the hallways. Um, of course, when she's resting in the room, she doesn't need it on. Um, and, um, take her, you know, keep the handle down. Don't grab the handle because that's kind of impersonating a blind person. Just take her leash and walk her around. And they did fabulously.
They went down to the coffee shop. They went down to talk to the valets. He went out and parked her several times more days than she probably needed. Just to be busy, you know? And there was [00:16:00] like a little crack, like a little arch at the bottom of my bed, and I could see her, and I would just wave really fast my hand, and her little tail would go thump, thump, thump, thump, thump, thump, thump.
It was just amazing to have her there with us. Yes,
Christina: Karen. I mean, that is a lot to be in a hospital for so many days with your guide dog, you know, if there's anyone that's listening that has to go through that, whether it's a surgery or anything has to be in the hospital for that long with their guide dog or white cane.
What advice would you give to someone on, you know, how to get through
Karen: that? Well, I think the biggest thing, which that director of nursing, she was so lovely, she was so impressed with our advocacy, self advocacy. And that would be my big, big takeaway is make sure you ask for what you need. Um, and I also told her that, you know, when, when the nurses come in, which they come in all through the day and all through the night, To please announce themselves because [00:17:00] I can't recognize people's faces because I only see one quarter of their face at a time.
So she went around to all the nurses and, and instructed them to do that. Um, but just to be as positive as possible. And, um, you know, the self advocacy part is so huge. Just finding out ahead of time, what can be done, how can it be done and just get it done. Um, And to do, like, they would come in and they'd say, okay, Karen, time for your walk, and in 15 minutes, if you're up for it, and I'm like, I'm up for it.
I mean, I've just been, I've just, you know, had a huge incision, you know, and, and so I'm like, if this is what I need to do, this is what I will do. And, um, you know, it's interesting because way back when I was five years old, I was at a horse show. My very first horse show. It was a walk track class and the first curve I felt the saddle slip [00:18:00] and the saddle slipped and I fell off in the middle of the horse show in the middle of the arena and my mom ran around and she said, Karen Anne, are you okay?
And I said, yes, yes. And she says, you get back up on that horse. And I said, no, mom, I want to go home. You get back up on that horse. And I did. And I feel like, you know, so much of our personality is in cement by the time we're five, six years, six years old. And, um, it just was, I think it just pulled me through all these events in my life to be, just have that perseverance and be able to advocate for myself and what I need.
And, um, and actually out of, uh, probably Absolutely. 20 horses. They placed six and I came in at fifth place, which I was quite impressed with. I thought I wouldn't get anything. But, um, it was being in the hospital was quite traumatic. At the end, Danny and I were kind of, uh, a little bit misty eyed because my a fib would not go away from the [00:19:00] surgery.
And I, um, I went to, um, I, the nurse came in and she, She said, you know what guys, I, I can see that you're very upset about this. You can't go home till we get it under control, but let's, let's see, would you like to have the, um, physical therapist come in and work with you? And I was like, wow, that's interesting.
I'm going home in a few days, right? And she says, I think, I think it'd be great to have the physical therapist come in. So she came in and I was so. So, um, cautious, you know, I had this new incision, you know, probably 10 inches long. And I'm thinking, how am I going to take that handle and walk, you know, and is it going to pull me apart?
Is it going to? break stitches? Is it going to, what's going to happen? And I was telling her my fears and how she has to gently pull to guide me. And she put her hand on my [00:20:00] shoulder and she said, it's okay, Karen. I used to be a guide dog instructor. I mean, what are the odds? And I was just blown away. And all of my stress.
Went away and she, you know, told me, keep your, your limbs like you're inside of a tube, no, no chicken arms and, and everything that she gave me to remember, like, keep Shanti, you know, back by your seam in your pants and, and when you treat her, just bring her back towards you, do not reach and, and, um, I said, would you please write these things down for me and I knew I'd be recuperating at home and taking her on walks and, um, So she did.
And I looked at them and I started to giggle because it's exactly the way Kevin had trained me. And so I sent it up to Kathleen and Kathleen sent it to Kevin and I guess we all had a huge laugh over it. But um, yeah, that, that was our journey.
Leslie: That is too funny. Well, [00:21:00] and you know what? Everything kind of happens for a reason.
I feel like people are putting our lives for a reason and that's really cool. You needed her and she needed you and I just think that's fantastic. I do want to ask you, Karen, because we did have an opportunity, um, to meet you at Bargain Brew, which was so wonderful, uh, and your husband, Danny and Shanti.
And you got up and spoke on the stage for a little bit with your husband and you guys are both fantastic and we certainly appreciate you guys, uh, being so vulnerable and always sharing your story. But one thing I wanted to chat about was, you know, your husband's perspective. He kind of had shared when he was up there about, um, you know, once you got Shanti and that you had this newfound independence.
But he wasn't exactly sure of his role anymore. So we've heard recently, um, from Linda, who is Jeff Hawkins wife, and she kind of shared the other perspective on the front end of, you know, sometimes there's so much involved in your caretaker and, and all these stresses and things that come with it. But Danny expressed kind of on the other side of it, like Wow.
His role really changed and he wasn't really [00:22:00] sure where he fit in anymore. You know, you weren't needing him to guide you around all the time and you were out going independently, which is incredible. And of course what he wants, but would you mind just sharing a little bit about his perspective?
Karen: Sure.
And that is it. I believe that he, you know, when you're, you're side by side, because he's gone through the whole journey with me and, um, You know, with the first diagnosis. And I remember being in Sarasota, my eye doctor saying, has anybody ever gone blind in your, in your family? I'm like, I'm here for an eye doctor appointment.
I don't know what you're talking about. So he's been, he's been with me for the whole journey. And so he is a very, um, protective husband. He does a lot for me anyway. And then after he, it was very hard for him when, um, Cecilia would come and do my white cane training because he couldn't attend until I think it was like the second to last, um, um, session we had.
So it was hard for him, he mentioned, to see us walk off, you know, [00:23:00] and, um, to not be part of it. And, um, and, but, you know, it's, there's times that if Shanti's with us and it's pouring rain, you know, we'll leave her in the car and I'll use, Use my guide dog. I called him my guide dog, not my guide dog. And, um, this particular, um, situation we went into CBS and it was raining.
So we're kind of walking in quickly and, um, jumped. He was nice and snuggly in the car and there was a park bench and. It was inside, and he cut the corner a little sharp, and my leg took out the park bench. I mean, we moved it probably two feet, and I said to him, now Shanti wouldn't have done that to me.
So that was funny, but I think he just is so happy to see that I'm independent. Because we do so much together, it's hard. [00:24:00] for him to sometimes maybe he feels left out and I think that's what he was kind of talking, speaking about at the Bark and Brew that he feels not as needed anymore, but that's not true.
He's just not needed for my mobility anymore.
Leslie: That's just such a huge lifestyle change. You know, when you're the one that's used to providing that kind of assistance. And then all of a sudden, you know, it's taken away by somebody else. I would imagine that would be challenging. But of course, I know he's so happy to see you independent and traveling and he's a huge support person for you.
He's fantastic. I really appreciated that perspective.
Karen: Yeah. Yes. And he'll take me anywhere. at any place. I mean, we still need him. We sure do. And he takes us to the store. He takes us to the garden shop and he takes us to our little favorite thrift store. And it's hysterical because when I'm in the changing room, Shanti has to always peek her head out from the bottom and look at it, everybody.
And everybody just chuckled, chuckled, chuckled. She's so curious. That's what I love about [00:25:00] Leader Dog. They're just, they have such great personalities and her curiosity. I love Timothy. I'm not sure I'm sure that Glacier is the same way. She's, they're just so curious, you know, they're always looking to see what's around them.
And so
Leslie: does this mean you don't think the robot dog is going to be,
Karen: I don't think so. I'm with Timothy about the cuddle and the emotions. You know, my mom just. Passed away, as you know, a week ago, and I mean, she has been there. Every tear that's fallen down my face. She's sitting right next to me and she'll get up and come from the other side of the house when, when I'm sad.
So it's, you can't, you, you can't replace that. I'm with Timothy on that 100%.
Timothy: So Karen, I know you're a go getter. Do you mind telling everybody what you're doing out for your advocacy in your, in your
Karen: community? Oh, my goodness, Timothy. Thank you. Um, for a year now, I've been trying to get a hold of the local Leo [00:26:00] instructor at our local high school.
And just recently, she phoned us and we went on Thursday of last week, and it was the most incredible incredible experience. And we spoke with three different groups, large groups of high schoolers on encouraging them to become Leo's and help their community. And then they can become lions after they Turn 18 and it was just so lovely to be able to teach them about Shanti and how she helps me.
And we would ask open ended questions and they would just answer. They were so excited. And this newly formed club already has 10. And I am just over the moon about that.
Leslie: That is wonderful. And so cool. And we really appreciate all the work that you're doing for advocacy and just sharing your story with us today.
I love the get back on the [00:27:00] horse. It sounds like you've been doing that most of your life. So thank you for sharing.
Karen: Exactly. Yes. You're welcome.
Leslie: All right. And thank you so much to our listeners for listening to the Taking the Lead podcast. I'm Leslie Hoskins with host Timothy Cuneo and Christina Hapner.
We hope you enjoyed hearing about Karen and all that she has overcome. Please join us again next time as we continue to dive into the world of blindness.
Christina: And if you'd like to learn more about applying to our free services at LeaderDog, you can head to leaderdog. org or call us at 888 777 5332. And don't forget, you can reach us at takingtheleadatleaderdog.
org with any questions or ideas. If you liked today's podcast, make sure to hit subscribe and check us out wherever podcast stream.