Episode Transcript
[00:00:10] Speaker A: Hello. Welcome. You're listening to seasons one of narcolepsy navigators, brought to you by naps for life, narcolepsy. Narcolepsy Navigators is a podcast for raising awareness of this fascinating illness through a deep dive into the lives and individuals living with narcolepsy and idiopathic hypersomnia. I am Kelly Boga, the founder of Naps for Life Narcolepsy and welcome to our stories.
Hi, everyone. Welcome to Narcolepsy navigators. I'm Kerly, your host, and I have narcolepsy type one. And today we have two special guests. We have Sakara, who is co hosting today. And we have Laura, who is toast's mom. So, Sakara, introduce yourself.
[00:01:01] Speaker B: Hi, everyone. I'm Sakhara. I have narcolepsy type one. I live in Philadelphia in the United States.
[00:01:08] Speaker A: Lovely.
And Sakhara, how was your week?
[00:01:10] Speaker B: I was good. It's pretty busy. We have a big event this weekend, so I've been prepping for that. A lot of work, you know, getting cameras together and lights and all that, but looking forward to it this weekend.
[00:01:22] Speaker A: That's good. And Laura, how's your week?
[00:01:24] Speaker C: Our week is good. Actually, toast had a really, really good week, so I can't wait to tell you guys about it. Has narcolepsy type one cataplexy as well.
[00:01:35] Speaker A: So the three of us today, my week was okay. I'm prepping to go to Australia for five weeks, so I'm trying not to over pack. And I've got my last exam tomorrow for hairdressing school for this year. And so. Yeah. And I had another assignment earlier in the week past that, so that's good. So just want to go a long graduation tomorrow and then I'll be finished. So I'm really happy about that. So, Laura, please introduce yourself to everybody. Tell them who you are, how old you are, if you feel comfortable, what state you're residing in.
And then also the same for toast.
[00:02:15] Speaker C: Great. So my name is Laura. I'm 46. I live in Illinois in the United states. And toast came to us as a foster. I work with the animal shelters in our area for about 20 years now. He's probably close to our 200th foster. Over the 20 years, we kind of specialize in taking special needs animals and housing them until they get appropriate forever homes. But we fell in love with this guy. So toastheen came to us a year ago on April 1. Our son worked for the animal hospital where he was brought to. He was a breeder dump. The breeder wanted to have him euthanized because they thought he was having seizures and they couldn't sell him. So, thankfully, the staff stepped up and asked if they could take ownership of him and run some tests, and thankfully, the breeders said yes.
And from that minute on, my son Luke begged us to foster, and I was under the presumption that he was having seizures. And I work full time as an nurse, so I said it wouldn't be an appropriate fit. You know, a seizing dog would need someone around more often. But once he got the diagnosis, a few months later, I think he was about four months old when he was officially diagnosed with narcolepsy. And then we kind of knew what we were going to be dealing with. He came into our home. It's been a roller coaster since then because I knew nothing about narcolepsy. I have never known anybody that had narcolepsy, and no veterinarian in the area and no other staff that I've worked with has ever seen it. They know it exists, but never seen it present in a dog. So we've been kind of educating ourselves.
Wow.
[00:03:57] Speaker A: You said you work as a nurse, so had you heard or seen a human with narcolepsy?
[00:04:02] Speaker C: I've not, no. We actually went to a pet market at a local brewery here a few weeks ago, and that was the first time I met somebody that actually had narcolepsy. And it was just by chance. She was an artist and a vendor there, and when she asked, oh, how, what's toe's story? Because he has a big stroller. We bring him around, and he said he actually has narcolepsy. And she's like, oh, my gosh, I have narcolepsy. And she was so excited to meet him. And that's kind of my hope is to get him, you know, maybe to a couple events or just kind of. I think he'll bring so much joy to the community. So that's what we're trying to do now, get our feelers out. We have several followers that are suffer with narcolepsy, so it's been a good experience.
[00:04:47] Speaker A: We would love to have renewal. To say we've been open for a year. That would be great.
[00:04:54] Speaker C: You guys ever encountered another animal or narcolepsy or.
[00:04:58] Speaker A: No, but I have seen documentaries of them, a horse and a couple dogs.
[00:05:03] Speaker B: I met my very first one when I went to Seattle. One of the doctors who was presenting his talk was on his dog that has narcolepsy.
[00:05:15] Speaker C: Okay. It seems to be pretty rare. We've made a couple friends with other tiktokers whose animals are influencers, and we kind of chat back and forth and try to bounce ideas off of each other. And I knew nothing about social media. People would send me maybe a TikTok or something from Facebook, and I would watch the video, and it's always animals. And when he came into our house, we have five boys, my husband and I, and they range from 25 years old to 16 years old. And they're like, you should put him, you know, get him on video, or even all our other fosters. I had no idea what I was doing, and I couldn't believe that after I posted the video, how quickly the love started pouring in. So I love this side of social media, and it's just been a ride and all.
[00:06:04] Speaker A: Good.
[00:06:04] Speaker C: Tuesday, we do live with toast, and we decided to bring him in town and have dinner in the park and get him an ice cream. And for the first time ever, and I don't understand it, he was able to stay awake for almost 40 minutes with no cataplexy. And he was walking around looking like a normal dog, which on a normal day in a public place, he would be so excited that we might get 40 seconds. So at first, I thought it was magic ice cream.
I can't explain it. I don't know how it happened, and I don't know if you guys have any insight into how that would be. He was very excited, of course, to be meeting new people, and it was like he was almost unaffected for that 40 minutes. You would never know by looking at him that he had any problems. So hasn't happened since. I was hoping that he was just magically cured. I know that that's not possible, but I don't know if you guys would have any insight, because that was so exciting.
[00:07:07] Speaker A: It's interesting. I'd have to ask you some questions about his history of it having the cataplexy, because in my experience, cataplexy changes over time. So you. Sometimes you have times where it's very severe for months or for even years, and then it can switch for no apparent reason. Maybe the medication that you're taking or the stress in your life, something changes, and it's much more mild, and then that could last for a couple of months, and then it just switch again and then go back very aggressively to what it was before.
[00:07:41] Speaker C: Okay.
[00:07:42] Speaker B: Right. I know for me, my catapaxy is triggered more severely by heat.
So if it's really hot, my energy will be just, you know, down.
[00:07:55] Speaker C: Right.
[00:07:56] Speaker B: And be, like, lethargic. And then I'm just prone to more sleep attacks. That's me.
[00:08:04] Speaker C: Yeah.
[00:08:05] Speaker B: So how does ptosis condition affect his daily life and routine?
[00:08:13] Speaker C: We do have him on, you know, kind of a schedule. I leave this house about 420 in the morning to go to work, and then I'm usually home by two for three days. And then, like I said, we have a busy household, so my sons are through the house and then my husband. So toast is rarely left alone for more than maybe 4 hours. We do keep him in a room off of our kitchen. It's supposed to be a dining room, but we have it staged as like a breakfast bar. And we have that gated off. And he has a special water bowl that has a floating top on it that kind of keeps him from keeping his face in there. It's a little bit more of a prevention. It's a little higher. Just because I know that when he has some severe episodes, he's out and I worry that he would maybe drown and I don't know. And then we have a nice big comfy mattress, and we also have a ring camera in there so that we could keep an eye on him through the day. But he's very used to this routine. I turn a fan on above our stove, like an exhaust fan, and that's more a white noise for him so he's not distracted throughout the house when we're making noise, when it's bedtime. But as soon as I turn that on, he knows. He goes in his room, he waits for his little treat, and he does really well. You know, I had to get a special bowl for him to eat because he's very food motivated and he would take big old mouthful if I let him. So we actually got a puzzle bowl that makes his feet a little slower, which seems like it might be more torture for him, but it's all to prevent him from taking large bites because he does have his attacks while he's eating, because his trigger is excitement. So when he's eating, he's so excited. Usually takes about 20 to 30 minutes to get through his meal because of his sleep. And then I notice if I put more exciting things or something different, you know, we'll add carrots or blueberries or some cucumbers. Sometimes it gets peanut butter or pumpkin. And the more exciting it is, the more attacks he has. So when it's regular kibble, he does really good.
But, you know, we've had a gate off our stairs, of course, because he can't do stairs. And when he's outside, we're supervising him just to make sure. He does have a nasty habit of liking to eat poop like some dog. So I mainly go out there to prevent him from getting really excited and doing that. But as far as affecting our daily life, it was really hard in the beginning, of course, because we didn't understand the condition, and we were learning him as well.
[00:10:44] Speaker A: Tell us a bit more about that, like, when he was a puppy and the changes that you've seen since, because it's so interesting. When I saw a picture of him as a puppy, I said, oh, my gosh, toss is really small, but tos is really big now. Like, I would never thought that that little puppy would be, turned out to be this big dog, and only in a year.
[00:11:04] Speaker C: I know he's big. He's. He's probably close to 80 pounds now. The last time we had him for a checkup, he was almost 78 pounds.
We didn't have him as a small, tiny, small pup, but he was definitely a lot smaller than he is now. I want to say when we took him in, he was around 35 pounds, and he was about four to five months old when we took him in. The baby pictures I have on his social media are from his previous fosters.
He was in foster with two of the medical or veterinary assistants at the animal hospital where he was taken in. It was two girls that kind of took turns with him, and then we took him in as a foster permanently until we found him a home, which I don't know, but when he first came, a lot of people ask how the other dogs reacted to him, because we have another dog, Laney, his big sister, who's a mastiff mix, and then a little dog named Oscar.
So I actually just posted, like, a throwback Thursday on TikTok of when they first met toast.
They did really good in the video for their first initial meeting. But then Laney at first, was really struggling with. I don't know what was going on in her mind, but when toast would want to play, she'd want to play, and then he'd go cataplectic, and he'd fall asleep, and he'd be asleep for a little while, and she almost acted as if he was dying, because she would.
And poke her nose in him and just cry, and then he'd wake up, and she'd play. In this cycle repeated, like, several times the first day. So I almost thought she, we might not be able to foster him because I couldn't put that kind of stress on her.
But by that evening, I think she realized, okay, he's special, and this is what he does.
And she adapted really quick, and she has been a godsend for toast. She is a support animal. She's so good, and he's obsessed with her to the point where I'm sure she'd like a minute, but, yeah. When we first got him, he couldn't even stand up to eat because he was so cataplectic. He would just kind of lay on the floor, and it would take him an hour to get down his food.
But we've been trying to keep him exposed to excitement in a controlled way because we want to learn to manage those emotions, and I'm hoping that's what's happening when he's able to take a little longer of a walk or maybe on Tuesday, you know, he's. We bring him everywhere with the hope that he'll be used to the car, used to meeting new people, and I. We've actually gotten a lot of grief for it. I will get comments, people saying, why do you bring him places if you know what's going to incite one of his episodes? And I just don't want him to be housebound, you know? And I felt like if you work with him, he'll learn, hopefully to not be so excited.
[00:14:26] Speaker A: Yeah. No, you're absolutely right, Laura. You're right.
You're doing the right thing. Ignore those people.
They would want Sakara and I to be stuck in the house also, and the inconvenience of it. And if I didn't take my medication, I would be falling down all the time on the street. So what? So I should stay inside? No.
You have to live your life as an adult with cataplexy. I find that we, through time, sort of train your emotions, which is what you're trying to teach us to do, which is great. Eventually, I think he will catch on. I think that's probably what happened the other day with the ice cream. Like, slowly, slowly. You'll see more. More bursts of that happening with him. Um, like, everything used to be fun. I would. I love comedy, and I'd say lots of things used to make me laugh, but now it takes, like, a really, really, really good joke to get a cataplexy out of me.
[00:15:27] Speaker C: Good.
[00:15:31] Speaker A: Yeah.
[00:15:32] Speaker C: Yeah.
[00:15:32] Speaker B: So, yeah.
[00:15:34] Speaker C: But he's grown leaps and bounds since we first took him in. The only medication that the veterinarian that. Where he came into was willing to try was Ritalin, and they put him on a dose twice a day because they have no experience treating narcolepsy. They don't feel comfortable experimenting with other medications. I know that humans can use other medications for cataplexy, and that's a. That's kind of my hope, is to maybe find a medication that's safe in dogs that will help them a little bit with the cataplexy, because his is quite severe.
So we're working on getting to a specialist that worked with toast when he was under the care of the shelter.
We just have to get him out there. And as you guys know, it's very, very expensive to go to specialist and at a university.
So we've, you know, we've done a couple fundraisers with t shirts and that, which helps. So we're hoping to get him there this summer and then maybe start experimenting with some of those antidepressant medications if it's safe. You know, I don't want him any ill side effects. And he does manage his condition really well. He never seems frustrated. He doesn't.
He's just a happy, joyful little pup, I think, because he knows he doesn't get frustrated. Like, I get frustrated for him, you know, when he's trying to play with his siblings and he keeps falling down, or if he catches the ball, then he can't play with it, but it doesn't seem to bother him. He seems just oblivious to it. And I hope that that's the case. And the veterinarians tell us that he'll live a happy, healthy life. And we've gotten used to making the accommodations of everything we do is just going to take ten times longer. So we've learned a lot of things, but he's worth it.
[00:17:30] Speaker B: So, speaking of activities, are there any activities, particularly, that toast enjoys and.
Or that help manage his symptoms that you guys do with him, or that he engages with his other siblings?
[00:17:54] Speaker C: Well, his favorite activity, of course, is to eat anything he loves, food.
And I'm just going to say we take the time to make sure that he's. Because his sister Laney will take any opportunity to sneak in and steal whatever he has because he's asleep, and she's learned that she's pretty smart. But other than that, his favorite, favorite thing to do is be with his sister and play. You know, they play wrestle.
He's always seems to be need to be touching her or one of us, but the two of them together, I know I post a lot of content with them together. And, of course, I added it to kind of highlight what his day, you know, what the cataplexy and the narcolepsy looks like. But to see it in person, the connection that they have, it's just something I've never seen before. And it's like, I wish I could package it up and put that feeling to everybody because, I mean, you just feel so warm and there's like real love there, you know, and.
But, yeah, those are his favorite things. The minute he sees his stroller or his leash, he knows he's going someplace. He gets very excited.
He does well in the car. He seems to love a breeze like wind in his face. Seems to. To stay awake and calm and just enjoy it.
What you doing, bud? But no, I.
[00:19:29] Speaker B: That's amazing because I know there, there are some dogs that sitting in a car, they going for a car, right. For some dog, it's just like very, like they can't sit still. They're all over the place, you know?
[00:19:43] Speaker C: Yeah, he seems, I think because when he was, you know, from coming into the animal hospital initially by having to rotate through the fosters a little bit and they would bring him there to the puppy daycare when they had to work, which was wonderful.
I think that with all that exposure to going back and forth and then we kept it up with bringing him places.
Like now we try to navigate where our dog friendly places and we'll make it a point that if we're going out to have lunche or, you know, to grab a little drink at a brewery, that it's pet safe and dog friendly because we make sure we keep bringing them. And he seems to just absolutely love it.
[00:20:27] Speaker A: Can I tell Stroller, was it hard to find?
[00:20:32] Speaker C: So I just went on Amazon and I was looking at like extra large dog strollers and it was hard to find because they have a lot of strollers that fit his weight. But we needed one specifically that he had room to lay down in because he'll be laying down most of the time. But I eventually found it on Amazon and I been hearing from other followers that they can't find it in other, like in Canada or in the UK, unfortunately. So some have arranged with family in the US to kind of order it. I never can attach a link on anything on TikTok. I think I should just add it to my link tree because we do get a lot of questions and it is a. It is a wonderful stroller. It was a life. It was life changing for us to find it.
I don't know what we would have done without it because he'd never settled into a wagon. He didn't.
[00:21:25] Speaker A: What did you use before?
[00:21:27] Speaker C: We would just carry him if we went to a store. We'd just put him in a cart. What you doing?
Or we did try a couple different wagons. What you got? Oh, did you find a treat?
He found a treat on the floor.
But then we were desperately looking for something that would be more suitable, that we could enclose, needed and say, hi, friends.
[00:21:51] Speaker A: Hi.
[00:21:52] Speaker B: Hi. Oh, my God, he got so big.
[00:21:55] Speaker C: Huge. Gigantic. Aren't you, baby? Yes, you are.
[00:22:00] Speaker B: No.
[00:22:00] Speaker C: The stroller has been our main. And then, I don't know if you've seen. We invested in, like, a service dog vest. It's got a couple of. That can support his weight. So when we're getting him in and out of the car, we could actually help him with the best we could trust. And I put the narcoleptic patches. Are you going to sit over here now? Let's make sure our friends can see. Oh, boot.
I got those patches custom made because it was very alarming for people to see him fall down.
This kind of is nice that we can alert to the condition so people know that he's okay. He's just right.
[00:22:40] Speaker B: Yes.
So do you. Do you guys run into any challenges with traveling, like, on a plane or, like, traveling with toast? Do you guys run into any.
[00:23:00] Speaker C: Well, we haven't attempted a plane yet, and I know that if I. I know that I've seen some different narcolepsy, like, conferences and stuff like that.
So I guess we will have to find out because we're definitely not opposed to bringing him places. I think he'll do great, but we would have to look into it. But in the car, he does wonderful. He is very content in the car. I usually sit in the back with him just so I could cuddle him and make sure he'll kind of lay on my lap. But I think he's. He's a very agreeable pup. I think that he'll adjust once we, you know, get that far. And hopefully we have some place to bring him that special.
Yeah.
So what's he doing?
He loves to lick and, like, suck on the fingers, like, oh. Which is fine, because, you know, I.
[00:24:01] Speaker B: Don'T mind letting them.
[00:24:02] Speaker A: I want to ask you. So a lot of people with narcolepsy and who have catapults, they have a human trigger.
Okay, so my human trigger is my sister. So usually you're triggered by emotion. So stress, laughter, anger, whatever. My strongest one is laughter, and my human trigger is my sister. My little sister, my youngest one. So whenever I see her, sometimes she doesn't even have to say many words, and I will have cat flexi. So never. Just never do it. Like, if she's by the stairs or something, my mom will be like, adair, don't talk to her, don't say anything, don't make a face, because I will have cataplexy.
[00:24:48] Speaker C: Wow.
[00:24:49] Speaker B: Yeah.
[00:24:50] Speaker A: So I was wondering if toast has a human trigger. Anyone in the family really sets him off, or one of the other dogs really set him off.
[00:25:00] Speaker C: I didn't know that that could happen, so I haven't noticed anything. I'm going to try harder to see.
[00:25:06] Speaker A: Yeah.
[00:25:08] Speaker C: I think also, because he's still, you know, he's under two years old. He'll be two in October. So basically, he gets excited about everybody.
It does seem like, because he's having the excitement that he's triggered when new people or someone comes home, but I definitely will have to pay attention because I.
[00:25:28] Speaker A: It's usually one. It's usually one person.
[00:25:32] Speaker C: Okay, I'm gonna pay attention.
[00:25:33] Speaker A: I'm very strong, and it's like that particular person that can do it. Yeah.
[00:25:39] Speaker C: Goodness. Yeah. Well, I'm gonna pay attention and I'll definitely let you know. But he.
As far as our family members, the same to everybody. And then my mom, his grandma is my backup for when we need a dog sitter, because she's used to, you know, toast is not the only special needs animal we have. We have several. So she's my one I go to that can manage everyone's medications, and she knows routine. She comes to our house and I know he loves seeing her and he's always falling asleep, but I know he's interacted differently with different people, so I'll pay attention and let you know. That's very interesting. I'm always learning something new about the condition, and it's so interesting, but I'm glad toast found his way to us and to learn about these things, you know?
[00:26:36] Speaker B: Yeah. So.
Well, I guess you can't really answer this question, but you're just learning about narcolepsy and cataplexy.
[00:26:48] Speaker A: But anyway, um, I was going to.
[00:26:52] Speaker B: Say, are there any misconceptions about narcolepsy and cataplexy in dogs that you would like to address or that you. You've heard about or.
[00:27:08] Speaker A: Yeah.
[00:27:09] Speaker C: So, I mean, I think the biggest one is, and I don't think it's just necessarily because of the narcolepsy, but having a special needs animal, we get a lot of advice that his quality life is not good, and we are being selfish by keeping him alive. So I think that there's a very big misconception that toast or any other special needs animal is suffering. You know, when I work with animals, and we've had to make some tough decisions with some of the animals that come through the shelter, quality of life is always the most important. And when we first had toast in our home, when we would talk with the head of the shelter and the veterinarian, you know, we had to question, is he going to have a quality of life? And we shortly learned that he has a wonderful quality of life. So I just wish that people would just take a second and ask the questions or maybe do just a smidge of research.
A lot of people think that I bought him from a breeder or that I'm a breeder. So we get a lot of hate on backyard bred doodles. And I understand the anger that people have with poor breeding practices, but I just wish when they see toast, that they didn't jump to the conclusion that that's how he came to be with us.
And I have, and a lot of times, I'm sure, because if you guys are on social media, someone. There are some people that have very strong opinions and. But haven't done the research, so I always try to remind them to, hey, just take a peek at his page. He's a rescue, and he has a good life. He is probably the happiest little pup I've ever met. Well, not little.
You guys know, he does his little rumps up right now. His head is falling asleep before his bottom.
But, yeah, other than that, I think that those misconceptions. I wish that people understood, and I'm sure it's the same for humans. I know that when someone sees a human with special needs, they think, oh, well, that life is not worth living. Gosh, I couldn't deal with that.
I'm sure there are conditions that are very hard to live with, but I don't like that people just assume with no, you know, they ask. You know, some people do ask very nicely, like, how is his quality of life? And I think if you watch some of his videos, you can see he's very happy and well, and he's very love like, across the world, as you guys can test, too. So.
[00:29:54] Speaker A: No, I'm glad you said that. It's something that we definitely have to get out there with disabilities that people shouldn't. Don't assume things and don't make judgments.
People are happy to answer your question, just respectfully. And people answer, don't make assumptions and make of your own thing and think that, you know, best or, you know, you want to give your solicit advice, you know, when you've had, like, two minutes knowledge of something, of someone, thing that someone has lived with their entire life, and you want to tell them how to cure it or live it or whatever.
[00:30:40] Speaker B: Yes. My. My favorite, uh, my favorite quote that we usually get is, like, oh, what? You just need to, you know, adjust your sleep schedule or go outside or. I, like, I wish I could sleep as much as you do.
[00:31:00] Speaker A: Yeah.
[00:31:01] Speaker B: And it's, you know, you have to.
[00:31:05] Speaker A: Laugh because you have to punch someone in the throat, like, everything.
[00:31:13] Speaker C: Yeah. I often think about how, because I don't know anyone personally that has narcolepsy, so to really understand the struggles, but in my mind, it's like, it's almost an invisible disease, so people can't see what it is. So I would imagine that there's a lot of judgment on. You know, I've seen a lot of people say that they get called lazy or, you know, just not motivated or their sleep schedule is the problem. Like, something is wrong in their lifestyle that they're choosing that's causing this condition. And I just. I feel for the humans that, you know, toast is lucky. He gets to be a cute little dog, and people have more space for his cuteness and maybe his disorder, but I feel like there's not a lot of grace given to humans that struggle with, you know, what I consider to be somewhat of an invisible disease. You know, if you were walking around with a majority deformity or something like that, people recognize that there is an actual medical issue, but when it's something like this, there's not that added benefit of someone able to look at you and know that this is indeed a medical condition versus mental or lazy, you know? So I can't imagine. And I always say my hearts go out to everybody that struggles with this condition. And I'm only gotten a little window into what that must be like just because I'm a dog. But, yes, it's very eye opening, and I'm hoping. I love spreading the awareness, not just for special needs animals, but for special needs in general and to just make room for people and space that all kinds of things out there that people are dealing with. And if we could put a cute puppy face to it, and it'll bring more attention even for the human side of things. Let's do it, you know?
[00:33:11] Speaker A: Yeah, 100%. I'm so glad that you took him in, and he's been, like, a blessing to your lives and everything. And I feel for toast as a dog, because I have a cat and cats like to sleep, but dogs don't necessarily sleep, need this type of sleep that cats have. So, like, cats need, like, 18 hours of sleep a day. Dogs don't need that. So, you know, I think it might have been harder to see it in a cat, because if the. Unless the cat had cataplexy, it would be sleeping all the time. You'd think it was normal. But that's the thing in a dog. You expect a dog to be very agile, to be, you know, very active, to be thing. So I can imagine, like, you know, if every time, because I'm thinking of when I'm not on medication and every time someone makes me laugh or there's a joke or I get upset or get stressed or I didn't take a nap, I'm going to have cataplexy attack. If I was to eat, I'd have a catapult.
If I saw my favorite, if I was walking past the cake shop and I saw my favorite cake, I'd have imagine just like, constantly. And every time you have a complex attack, you're exhausted, you're tired, and. And, and then you need a nap after to recover from it.
[00:34:30] Speaker C: Yeah.
[00:34:31] Speaker A: So does toast ever have, like, attacks where he has them in, like, one after the other after the other after the other after the other?
[00:34:42] Speaker C: He does. And especially when he's playing or eating, because I, you know, when he comes out of, sometimes the cataplexy will lead to sleep.
Sometimes it doesn't. Sometimes it's just cataplexy. And sometimes it's hard for me to tell if he's actually in a sleep spell. But when he's playing and he's really excited and everyone's going, he will get him a few seconds of zoomies, and then he's out, and that can be seconds to minutes. We never know how long.
And then he'll pop right back up to what he was doing, like, he didn't miss a beat. And then it'll happen, you know, several times during play. And I try to tell that to people on his followers that I'm editing it, you know, to, you know, so that they can kind of see the whole episode of play versus if I let it go. But that is really how he is when he's playing or eating, because comes out of the event and the excitement is still there, the trigger is still there. So it happens again.
That's where I feel like he's getting a little better, managing that, and I'm my hope for him is that we can get where we can play or like on Tuesday, walk down the street, you know, and enjoy it for more than just 40 seconds or so, you know, just to let him have some normalcy, you know, like, I just.
[00:36:11] Speaker A: I'm going to be praying for him. I think that we're going to get there with Tas.
[00:36:16] Speaker C: I think.
[00:36:16] Speaker A: I don't know if you're religious or not, but I really think we're going to get there because I was recently, two years ago, taking off my narcissist medication, the ones to keep me awake.
But one thing I'm glad they didn't take off was the cataplexy meds.
[00:36:38] Speaker B: Yeah.
[00:36:39] Speaker A: Because I can deal with sleeping all the time, sleeping on the bus, sleeping in odd places. I can deal with that. What I cannot deal with is falling down on London streets. No, that I know.
[00:36:52] Speaker C: Right. I can't imagine. And I know that people have said that when he's in that cataplexy and he's down, that he has complete awareness. That is correct. Yes.
[00:37:02] Speaker B: Yeah.
[00:37:03] Speaker A: Yes.
[00:37:03] Speaker C: So, I mean, his mind is awake. He understands what's going on, but he just. His body's not working. So that's the understanding that I have. So is that pretty much how it is for humans as well?
[00:37:15] Speaker B: Yeah, yeah, yeah.
[00:37:18] Speaker C: That makes it worse for me because I feel so bad that he knows his sister's running around and he's like, I can't. Or, you know, we had the bacon video that got a lot of views where the. They gave him a little piece of bacon. It's just under his nose and you could tell he wants it, but he can't get it. And that's. I struggle just.
But he never seems frustrated.
So I'm just hoping that the pot, the bacon will be there. The carrots.
[00:37:52] Speaker B: Yeah.
That's phenomenal that he never seems frustrated because with this. With this disorder, it seems like at times all you can feel is frustration and then you have a catapultic episode and you're like, yeah, you know, I just wish that I just go a day without having an episode or get through something without, you know.
[00:38:24] Speaker C: Yeah.
[00:38:25] Speaker B: Falling asleep or.
[00:38:28] Speaker C: Right. Yeah. I can't imagine just what I'm learning. It seems like it would be quite a struggle.
And I've been getting some followers that will message that their child has been diagnosed. So did you guys, were you guys diagnosed as youngsters or did you develop it later?
[00:38:48] Speaker B: I was diagnosed in 2015, so I. I think I was maybe in my twenties.
[00:38:59] Speaker C: Okay.
[00:38:59] Speaker B: Yeah, I was in my twenties.
[00:39:01] Speaker C: Okay. And did you have an event that led to your condition, like, to your diagnosis, or did you have it for a long time, you just didn't know what it was?
[00:39:12] Speaker B: So I think I did have it for a long time. I did have an event when I was little, like four. I felt I fell out of a tree, and I kind of like, um, hit my head. I had, like, you know, dramatic brain injury, and I think that, um, contributed to the narcolepsy, but before that, I was like, on like, a CPAP machine, and. But I had a whole bunch of other sleep issues.
[00:39:48] Speaker C: Okay.
[00:39:49] Speaker B: So I did a, I did the. What is that called? Mls.
Yes, the mlst. The daytime nap test.
[00:40:03] Speaker C: Okay.
[00:40:03] Speaker B: And that's when they found out I had.
[00:40:06] Speaker A: Okay, I was diagnosed at 18, but I started having my symptoms at 15 when I was in, when I was in high school.
That's when mine started, and I'm 41.
[00:40:23] Speaker C: I would imagine it's a little bit more comforting once you get a diagnosis. While probably scary, but at least to have some explanation of why feeling so terrible or.
[00:40:34] Speaker A: Yeah, 100%.
[00:40:35] Speaker C: Yeah. So.
Oh, I'm sorry.
[00:40:39] Speaker A: No, go ahead.
[00:40:41] Speaker C: We're told what the understanding is with dogs is that it is genetic.
It's either you could be genetic or it could be driven by some causing factor. But I did have a follower reach out who was having some issues with her little Frenchie dog. And I guess the dog had gotten really sick and then started having cataplexy and narcolepsy, and she got better. She's kind of outgrown it. So I don't know if it was indeed cataplexy and narcolepsy. It appeared to be the symptoms that she had shared with me. But it's just like, you know, we're learning and I know, I wonder if there's a lot of animals that have it, but maybe weren't, you know, were euthanized or they were seeing, like, how prevalent it really is.
I wish I kind of knew. People ask all the time, like, what percentage is out there? And I just don't know.
There's no data out there that will give you, like, a number like that.
[00:41:47] Speaker A: So, yeah, that's something that more research needs to go into, definitely.
Does toast have any other symptoms of narcolepsy apart from cataplexy? Like, have. Does he have any hallucinations?
[00:42:05] Speaker C: I don't believe he does. He.
He definitely, when he is actually sleeping, he does dream a lot. I mean, he.
More so than our other dogs. Like, if he's in a good sleep. He definitely is having some sort of dream, because usually I can tell that's when he's really sleeping, is because he's twitching a little bit or he's making noises.
And then we were told when he was younger, and, like, when we first brought him into the house, he would actually be very aggressive when you went near something he wasn't supposed to have. So if he stole something or, you know, like, one time he stole soup, a little container of soup off the counter that my son had brought home. And my son's reaction was to grab it from him, and toast actually went to bite, like, aggressively. And my husband also, one point when this was when he was a little younger, went to pull up a bone, and his reaction was to snap. And he actually did break skin on my husband's hand.
And we were told by the veterinarian that aggression can sometimes be a side effect.
Now we're better where we don't.
I don't attempt to take things away from him. He's okay. If I take something away that he's always exposed to, like, if I take his food bowl while he's eating, he's fine. But if he were to, say, steal something off the counter, I wouldn't go to take it out of his mouth right away, because he may bite.
But I don't know if that's just a dog behavior for him or if it is some sort of reflection with the condition.
[00:43:47] Speaker A: Well, with narcolepsy, you do get very moody. It's something that's not really talked about that a lot. But moodiness is something that does come, especially when you're extremely exhausted. It's like your brain doesn't, like, have energy for.
Excuse my friends, like, for bullshit. Like, you. You just don't have the filter, almost in your mouth to, like, as a human being, to deal with certain things. And it's either you remove yourself from the situation, which is what I have learned to do, or you'll just say really horrible things to people, like, what you don't mean. But it's just because you're so tired that you can't, like, compute, like, silly things. And I found that talking to people who have very small children who develop narcosy, like, five or six years old, they would have these really aggressive episodes. Like, they wouldn't want to eat their food. They'd fling the food off the plate, like, really, like, a lot of changes in their personalities. And then the doctor thought that they had brain tumors that were causing a personality change. And then in the end, they found out there was narcolepsy. So this was causing this type of aggression. But then, you know, when the child is sort of in that state, she might say, oh, it's the terrible twos, or it's these type of things that you can do, but it's not right.
[00:45:20] Speaker C: Okay, well, so it kind of makes sense, then, that it could be one of his effects.
But no, overall, he's a good, healthy.
[00:45:32] Speaker A: Pup.
[00:45:34] Speaker C: And I'm so glad he came into our life. Like I said, we have other special needs animals with more typical disorders, but to learn all too. So it's learning both ways.
[00:45:51] Speaker A: Are the two dogs, they have special needs as well.
[00:45:54] Speaker C: So our dogs don't, but we have four cats.
Usually when I would foster for the shelter, it would be like little kittens or that just need a little time before they're big enough to get their vaccines and that, and then be adoptable.
But we've kept the unadoptable, so to speak, so we have one that's got brain damage. They don't know if I got her when she was about three or four weeks old, and they don't know if it was a birth injury or if she was injured somehow prior to coming to me, but she seems to have no short term memory, which is odd. She needs to, like, lean against the walls. She seems to have some balance issues. You know, when a cat jumps up on a counter, you could kind of scoot them off and they'll land on their feet. She wouldn't. So we have to be careful not to react and, like, push her off of a counter because she wouldn't land on her feet and she could be injured.
The main reason we kept her besides that was that she forgets where her litter box is, and sometimes she just urinates where she's standing. And I know that a lot of people couldn't manage that, and they would either abuse her or return her to the shelter, and then she'd be around. So we decided once we realized she had this urinary issue, that that's a deal breaker for a lot of people, that she could live with us, and she's gonna be seven, six or seven, I have to think. And then we have another little black cat, Mary, that has really major anger problems. She does not like other animals, and I, we would bring her to adoption events, and she loves people, so she'd want to cuddle you, and you'd pick her up and be like, oh, she's so cute. And then she'd see another cat in the area and she'd start hissing and spitting. And I think after eleven events, we decided we're just going to keep scary Mary.
She tolerates all the other animals in our house, but they know to keep a distance that she's, you know, she'd probably be happy being an only cat. And we have. Our big orange cat is in kidney failure, so we have to do daily fluids for him, sub Q fluids, like iv fluids, and he's on medication. And then bathtub. Our permanent foster, she had a reoccurring wound between her shoulder blades that had required several surgeries. She had gotten MRSA infection.
She has reoccurrent eye infections. So right now she's still technically a foster. We're just trying to get through some of the medical stuff and then we'll adopt her when the time comes. So it's more our cast, you know, we just kind of keep the ones that probably aren't going to have the best life if placed with the wrong person or may face constant return to the shelter. Um, so, you know, that's kind of where we. We lay. But you can only have so many, right?
[00:48:55] Speaker A: How are they with toast especially, like, scary Mary?
[00:48:59] Speaker C: They're fine. Um, Mary just kind of keeps her distance. If toast, he seems to love, like, the cats. Um, Alice, our brain damaged cat, and the other two will rub up against him and he's fine with it.
I actually, we haven't fostered since we took toast in a year ago because he was so. He needed so much from us. So I actually just let the shelter know that in the event they have a little kitten or two, that I'm open to helping out again. Because we now are managing toast well. And I do want him to get used to the little ones coming in the house, which I don't think he's gonna have an issue with. I think he'll do great because he's gentle soul, you know.
So we'll see. And if I do get any fosters, I'm sure I'll be sharing them on toast's feed and, you know, see how he does with it.
[00:49:54] Speaker A: It's amazing. You have such a big heart, Laura, to bring all these animals into your home.
[00:50:00] Speaker C: I love them. That it's. It's easy for me. It's. You know, when we. When our boys were younger and I was working and my husband would say, you're so tired, why don't you just pause the rescue work? And that's the thing I love like that, even though it is a lot of work. Emotionally and physically, you know, you're tired and.
But I love it so much. I could never not do it because I feel like there's such a need for this.
There's so many animals that are being euthanized and for being healthy and just being overrun, but then you take in the special needs and they're euthanized first and they don't get a chance. And I'm glad Toast was brought to the animal hospital. He was, because he probably would have just been euthanized and what a waste of a wonderful life, you know?
You know, I know we can't save them all, but I can help some.
[00:50:58] Speaker A: You know, and education out there to people.
[00:51:04] Speaker C: Right?
[00:51:04] Speaker B: Right. Yeah, definitely.
Yeah.
[00:51:07] Speaker C: That's what I'm hoping toast's social media really does is highlight that there is a place for these animals, all animals, but in the special needs community, especially. And you know, where this will take us, I don't know. You know, like, I always have these fantasies that we'll be able to start an organization that gets special needs animals to where they need to be so that they're not euthanized or to get a network of volunteers that have special skill set to deal with some of these animals.
[00:51:44] Speaker B: Yeah, that's an excellent idea.
[00:51:47] Speaker C: I would absolutely love it.
Try and get some of the higher kill states that can't, you know, their high euthanasia rate where we can organize getting those animals to a shelter that can handle them or a foster that can handle that. So I've been looking into trying to navigate that, but that's my hope.
[00:52:12] Speaker A: I like that. That's really.
Yeah. I just realized your t shirts is post.
[00:52:18] Speaker C: Oh, yes. This was one of his first t shirts. Toast, the narcoleptic dog. And my husband did this little dog on toast.
[00:52:31] Speaker A: Are they. Are they suspect?
[00:52:34] Speaker C: We initially did these with, like, custom ink as a fundraiser because toast needs eye surgery. His lower eyelids curl in so his eyelashes rub up against his eyeball. He's had one surgery prior to coming to me, but he's affected again. They're kind of turning in. So we did this fundraiser to try and raise some money for the surgeries because they're expensive and we were able to raise enough with the shirts and people's donations to do one eye. So we don't have this particular shirt, but my husband did put this design on shirt, and we're using spring. It's in our link tree. I guess a lot of talkers use it as per merchandise.
[00:53:18] Speaker A: Yeah.
[00:53:19] Speaker C: So we actually do have a little bit of merch in his link tree. And, like, we did just have another t shirt fundraiser. It was for pride month because it's June, so we had a pride t shirt for toast.
Unfortunately, I ended up having to purchase a lot of those because we didn't. I didn't realize when you print a t shirt, however many colors you put into it dictates the price and how many that have to be sold to print.
So I ended up buying, like, 15 of them because I didn't want them to not print. And, of course, we had some opinionated people on the t shirt itself and what we were supporting, and I wasn't. I wasn't let them.
So I buy the t shirts. So when I purchased the t shirts, and with the donations of people that did purchase them, it actually, I didn't raise any money, but the t shirts paid for themselves, and I'm hoping to kind of sell those around. Some people have already asked, like, oh, that's a cute shirt. And, you know, then I could just kind of sell it to them.
[00:54:25] Speaker B: Well, I know I would definitely buy a shirt.
[00:54:28] Speaker A: I would buy one, too.
So the print on demand.
Sometimes you can have a print on demand pop up shop, so then it can always be there. So then people can just go and buy it all the time, like, whenever they want.
[00:54:44] Speaker C: Yeah. That's what we're learning now.
[00:54:48] Speaker A: So if you something like that, definitely get in contact with me. We'd love to, like, put it on our page. We're gonna be.
Yeah, naps for life will be registered as a CIC soon community interest company to help people with narcolepsy, and would love to feature him and stuff so we can help.
[00:55:10] Speaker C: Yeah, that's great. And I don't know if you've seen there are or if you've been in contact with any of the other dogs on TikTok that are afflicted with narcolepsy. We have come across a few, but I would imagine that maybe their parents might also be willing to do an interview on their. I, uh. Side of things. Yeah, you guys, just to kind of build our little community. Yes.
[00:55:38] Speaker A: Yeah, I'll look out for that. There was a lady who. Who joined my instagram, and she had the black dog that had narcolepsy.
I need to go back and look. But, yeah, yeah.
[00:55:52] Speaker C: We've. We've found another goldendoodle puppy, a little female from Canada who is, like, identical to toast in condition.
And then we've also found a pit bull mix that another foster failed on.
His name's Farkel.
[00:56:11] Speaker A: He's cute.
[00:56:12] Speaker C: She writes narcolepsy books for the dog.
Yeah, same kind of situation. She runs like a special need and senior animal rescue. And he came to her special needs. Same story. Thought that he was seizing and his cataplexy is only triggered with food, so his is not as severe as toast, but, you know, another great family. And then we have a couple other that we try and bounce ideas off of, but it seemed like toast was the first one. That kind of space in there. And then people reach out to me and then I always try to promote a them because the bigger we can spread this awareness, even in past, like, it's been such a help to me to know somebody. Like, what medications are you trying for your dog?
Trying to, like, get these special needs animals up? And, you know, I feel like social media, you have to support each other and no, you have the platform, so. And toast has become so popular that it's amazing to me. I don't even know what to do with it. People are like, oh, you gotta go on Instagram. I just send my tic tacs there.
Just learning social media for me, I might as well have learned a foreign language. I didn't know how to do anything, and so I have to teach myself to edit or just to upload. And it's been.
But it's wonderful. I'm learning. And I think that toast is helping a lot of people. And even if it's just for the moment when they watch his video and they smile, we've gotten a lot of messages from followers that, oh, you know, it was a really bad day for me. And, you know, toast might have brightened their day.
[00:57:56] Speaker A: So, yeah, that's what happened to me when I saw toast. Yeah, I was feeling lonely one day, and you put your thing up about toast, and I was like, oh, toast is so loved. Like, I was like, oh, I can't wait until I meet my significant other that will love me as much as Tulsa's love. Unjudged on, like, what's the word? Unconditional love is so hard to find, and it's so beautiful to see.
[00:58:27] Speaker C: Yeah, yeah, he's. I say he's the world's dog now. He's not just mine because, you know, if somebody says something off key on one of his posts, I don't even have to react. Most of the time, his followers will go up to bat for him, and I say, oh, you don't want to mess with these people.
And he's, you know, he's, he's so loved, and it just our whole household has changed because of him. Just, he brings so much joy. And then you have the love pouring in on the social media that, you know, a lot of people are used to seeing negative stuff. And I love that it's become a platform for some joyful things, and we can help each other. And I love it. I'm really happy, and he's just a joy. What you see when he's playing, that's him.
And I hope to get him to some events to kind of brighten the room a little bit. For some of our humans that suffer with it, or even children, he'd be like a therapy dog almost. I have to look into to get there with that, because I think he would do really good.
[00:59:40] Speaker A: I think so, too. Mm hmm.
[00:59:43] Speaker C: Yeah.
[00:59:44] Speaker B: I'm pretty sure a lot of people in the sleep community would love to meet him, like, in person.
[00:59:50] Speaker C: Yeah. Everyone asks, do you do meet and greets? And I'm like, I don't. I wouldn't even know how to facilitate that because I don't know, you know, but I'll tell people, oh, we go up to this farmers market, and, you know, we'll have some people that are in the neighborhood that are excited to meet him, but it would be nice to have an event or to attend an event that is specific for the sleep community and, you know, to bring them as some sort of support animal or a therapy dog.
So I have to look into that, and hopefully, if you guys hear anything that's a little bit, like, even local or doable in the US, that maybe we could try it out, you know?
[01:00:33] Speaker B: Yeah.
[01:00:34] Speaker A: What state did you say you were in again?
[01:00:36] Speaker C: We're in Illinois. We're right outside Chicago.
[01:00:39] Speaker A: Okay.
[01:00:44] Speaker C: And I'm sure there's stuff around. I just have to research it a little bit, and it's overwhelming.
[01:00:51] Speaker B: A lot of, I think, wake up narcolepsy is having their next. Next year, they're having their sleep summit.
I remember where it's going to be, but I don't think it's going to be, like, too far from Illinois.
[01:01:15] Speaker C: Okay. Yeah, I think that. So we're in touch with them. They were friends with us early on, you know, bouncing ideas off of them as well. And I'll have to reach out. Have you ever attended one of their.
[01:01:32] Speaker B: Yeah, so I went to their sleep summit in this past.
This past April. Yeah.
[01:01:42] Speaker C: Okay.
[01:01:43] Speaker B: In Seattle.
And it was really, like, phenomenal event. I mean, you know, you attend support groups and everything, but to meet the people that you've been online with for years. And it's a really, it's a really good experience, like, meet people in person.
[01:02:04] Speaker C: Is that something you think would be, like, dog friendly, like a place for toasts would be beneficial or is it hard to say?
[01:02:12] Speaker B: Well, where we stayed at the Marriott, I do think it is dog friendly.
Just because one of the, along with one of the doctors, one of the other speakers, she had her, Tatiana, she.
[01:02:29] Speaker A: Had a support dog with her.
[01:02:30] Speaker B: Yeah.
[01:02:31] Speaker A: She was able to bring her support dog. And Doctor Emmanuel, he has narcolepsy.
It's really tiny dog. His dog has narcolepsy, and he brought his dog with him as well.
[01:02:46] Speaker C: Yeah, I'll have to reach out something like that I would be very interested in, and, you know, I would have to touch base with them. I know that the pit bull mix, Farkle that I was telling you about, his mom had done a little collaboration with wake up Narcolepsy recently. I think in the past month, they released the video and they actually talk about toast as well on there. So, gosh, wouldn't it be wonderful if we can get a few dogs and one of the therapy sessions that could be just like, let's cuddle and nap with these pups? Yes.
[01:03:18] Speaker A: Yeah.
[01:03:19] Speaker B: Yes.
[01:03:20] Speaker A: It would be lovely.
A little pop room and.
[01:03:25] Speaker C: Yeah, yeah. Let people just kind of engage with them and hopefully give them a good smile or a good cuddle.
[01:03:33] Speaker A: These things have actually been, like, research to be very beneficial. You know, in some hospitals, they bring puppies into sick places to, like, let people hug the puppies and stuff like that. And it does help.
[01:03:46] Speaker C: I have. I have kind of looked into it a little bit with a couple of organizations, but it's. There's certain criteria that the animal has to meet. And because of his condition, it makes it a little difficult for him to, like, meet basic commands or, you know, because some commands he's so excited, he doesn't follow, but definitely has the friendliness and the energy level that would be agreeable to those type of situations because he's. He's very friendly and gentle. So I would love to do that. That's. That's my husband and I have been working on trying to navigate that, and then I'm hoping that this grows and everyone's like, oh, do you want to quit your job? And I just be a social media person. I said, no, I want to quit my job and save, like, the animals.
Hopefully this breeds into something that we can help more animals and spread awareness or even just spread awareness about any special need. The next animal that comes into my house that has a human disorder as well. Like, why not spotlight that and bring attention to our fellow humans and our animals? It would be lovely. That's the dream, you know, I don't need to make money. I just need to, like, save everyone.
Yeah, I would love to make money, though, but. But until then, I'll continue nursing. I love that, too.
[01:05:13] Speaker A: No, definitely no. There was a lady in Canada and her herd of grandfather's cat. The grandfather died, and she inherited the cat, and then she ended up starting a charity because they found that there were so many people who were dying, older people who are dying that had animals, but the animals had been with them so long that the animals were so old that people didn't want them, and then maybe even family members didn't want to take them. And what do you do with the animal when the animals also grieving because it's lost its person and.
And now you're just going to dump it on who? So she started and it really took off. And, yeah, there's definitely space, things like that out there. Mm hmm.
[01:06:13] Speaker C: Yeah, we see it every day in the shelter. Animals being brought because their owners have died, and it's sad because they are elderly, and a lot of people don't want an elderly, sick cat that has urinary issues or a dog that, you know, need medication.
But that's the.
That's the thing we're hoping to share and share and change, you know, like, toast would have been euthanized, and a lot of people would have been scared to take him. And now everybody wants him, and you might think he's still a foster. Where can we adopt toast? You know, shelter, you will be able to find yourself a toast.
Maybe not narcolepsy, but a lovely dog that has some need for you, too, you know? But, yeah, so it was. It's. It's good. I'm glad we got to do this. I'm sorry about the confusion in the beginning, but.
[01:07:22] Speaker A: That is not a problem at all. I was just like, please let her come on today. Please. But I have two. Two interviews left, and it was years and a lady in Chili on Sunday, and I'm like, I want to end the season of interviewing on a very high note before I go on holiday. And I'm not interviewing anyone anymore because I need to catch up on all the editing. There's so much editing to do, and editing takes a lot. You know, it takes a lot of energy. And with the narcolepsy, it's, like, so draining. So I was like, this is going to be the last two. And I was like, oh, we have to have a toaster. We have to have him.
When you finally text, I was like. I was like, okay, yeah.
[01:08:08] Speaker C: And I did have the email. I just didn't. I was looking at from you. I didn't, you know, because I get so much like spam and so much that I just my eye and catch to it.
You said, oh, no, it's a. It's not under your name. I was like, okay. And then when I log on, I didn't realize, like, I didn't have this, this stream, yards. I had to download it and I was like, oh, but I'm glad it worked out. And it's a lovely interview, and I'm glad to be able to speak with you guys. I learned a lot, so good stuff, too.
[01:08:44] Speaker A: Zakara, is there any more questions you'd like to ask Laura?
[01:08:47] Speaker B: So is there any advice that you would give to pet owners that might have a pet similar condition as toast?
[01:08:57] Speaker C: It is hard, and even as a foster and I've been working with rescue for a long time, and initially, like I said, I didn't think we could take toast if he was having seizures. But I believe that with a little research, you know, if your animal's having an issue, you know, try to research the condition a little bit and just give it a little time, and then being able to recognize that that animal may not be a fit for your home is not a bad decision. You know, sometimes I think people get a bad rap for giving up on an animal and realizing they can't handle it. And I think that if someone is struggling with an animal with a special need, and whether it be financially, they can't do it or they just can't manage it, that's okay. Just be honest with the rescue or the vet, and they'll help you. And you don't. I don't want people to be upset or disappointed in themselves, you know, that it's. It's okay to not be able to do it. And if you are willing to do it, just give yourself some time and some grace, because it is hard. It's very hard. It's very time consuming. And I know financially it's. It's rough. And you know that there are resources out there. So my hope would be that you, you know, you either you can just.
He's back. He was laying in his little dog, but over here, and he's back with us. Hi, Bubba. It's exciting. Yes. But, yeah, just resources and don't beat yourself up. And give yourself some grace.
[01:10:30] Speaker B: How can listeners support research or awareness for narcolepsy and cataplexy in animals?
[01:10:39] Speaker C: I am really unsure. I have found a couple, two specialists, like neurologic specialists that we've been in contact with would be the Purdue University neurology department. And then I hear UC Davis in California has a couple veterinarians that really are more invested in and have more patients population with it. But yeah, I'm not even sure I would think starting there is, because I can't even find a resource when you try to look up any information, you know, so I couldn't even tell anybody where to if they had a means to help out that way. But definitely are many organizations and probably everyone's own location that they can help just generally with special needs or helping fund medical expenses for people or animals with need. That would probably be the only way until we get a little bit more community in these animals that suffer with it as well, which is what I'm hoping to do. So we can learn and maybe find some good, suitable medications and all that stuff. So. And at the end of the day, even just volunteering or donating to your animal shelter is good. Toasty, come here. Now. He thinks he's a big boy and he tries to go by the stairs.
What have you got? Come here.
We don't have our. We're in our basement because it's quiet down here.
We don't have those stores, those stairs blocked off because he's not down here without us. And usually my husband will help carry him up, but he's thinking about it. He's over there.
I do it.
So, yeah, that's it. Any other questions?
[01:12:34] Speaker A: Well, usually we ask the red questions to everyone. We say, if you could get rid of narcolepsy, if by pressing the red button, would you, do you think that toast would press the red button?
[01:12:46] Speaker C: I don't think toast would push the button, and I definitely would not. I would like to push the cataplexy button, though. He's coming, because he did make his way up the stairs and I don't want him to fall. But no, I wouldn't. If that's who he is and he has a purpose here, and if that's to do what we're doing, then I don't think I would push it, but I would like to eliminate any struggles that humans have with the conditions.
[01:13:14] Speaker A: I'm also for pressing the catapult button.
[01:13:17] Speaker C: That's the one that I struggle with, and I can't imagine if you're a human suffering with that. My age, you know, perimenopause is on the horizon, and I get tired, and I think it's because of that. And I think to myself all the time, I can't imagine if this was, you know, something I had to deal with regularly. So, like I said, my heart's out to all of you, and I always think about all of my followers that suffer with the condition, and, you know, my heart's with you, even if I can't possibly understand what you're going through.
[01:13:54] Speaker A: No, but that is understanding you every day, and that's more than a lot of people are doing to understand, even family sometimes, and friends in some cases, for humans.
[01:14:08] Speaker B: So, yeah, yeah, I mean, you know, just a simple fact that you taken into and made all these changes to your life and just accommodate him, it's more than what most people would do.
[01:14:27] Speaker C: So, yeah, well, hopefully we spread awareness that it's not as bad as people think to open up your home to either people or animals with special needs. And hopefully at the end of toasts days, and then I far off future that that will have made a difference and a difference with him to bring awareness or, you know, just to even meet some people that are struggling with the condition at maybe one of these events, what I think would be really wonderful, you know, to hear experiences from other people, and I love learning about this condition, and I have so many questions all the time, and.
But, yeah, it's nice that you have this little community, too, and you welcomed us into it.
[01:15:22] Speaker A: Oh, it was lovely. Thank you, Laura, for coming on. Thank you for introducing us to toast. Thanks for telling us about tos story and your family story as well.
[01:15:33] Speaker C: Thank you, guys. It was lovely talking with you.
[01:15:36] Speaker B: It was lovely meeting you.
[01:15:38] Speaker C: Yes, you too. Hopefully in person someday.
[01:15:46] Speaker A: Can you tell everybody toast this handle and stuff so they know where to go?
[01:15:50] Speaker C: So our biggest platform is TikTok, and that's toast the narcoleptic doodle, you know, on TikTok. If you just start to enter that, like I said, we are on other, you know, if you kind of Google toast the narcoleptic dog, you'll get a hold on things. But that's probably our biggest. We put most of our content, all of our content on TikTok, so.
And then I always try to answer questions when people, you know, I'm always on there trying to, because that's what I want to do, is I want to spread this awareness. So my husband's like, you don't have to answer everybody's question. I'm like, but I want to because that's the purpose. If there's somebody that is struggling with an animal or always can message me on there because I'm willing to, you know, if there's another dog or a human thinks maybe their animal's affected, then just reach out and I'll help you as best is what I'm learning, because there's not information out there right now. I feel like I'm giving people information and I barely know, but I have the experience a little bit for the past year, so.
[01:16:50] Speaker A: Yeah, and it has to start somewhere.
[01:16:52] Speaker C: It does, yeah, it has to start. And I'm happy to help navigate it with some, someone else and always happy to learn about the condition from humans. And so I try to be open on TikTok and I always check my comments and my messages so that I could, you know, you got to get through a lot of junk, but I eventually get to the actual humans that are asking an actual question.
[01:17:21] Speaker A: Yeah, no, definitely. And next time we talk, I'm looking forward to hearing that toast had another one of those ice cream moments.
[01:17:29] Speaker C: I hope so. Yeah, I. Did you guys get a chance to see his mother's Day post?
[01:17:35] Speaker B: No, not yet.
[01:17:36] Speaker C: Yes, usually he can only walk like ten to 15ft at a time before he, you know, goes down. And this particular day, he probably made it like 30 yards two times. And it was on Mother's Day, and I was just like beside myself that he was able to walk and not have to get in a stroller the whole time. So, yeah, I'm hoping that we're on our way to more of these.
[01:18:01] Speaker A: Yes.
[01:18:02] Speaker C: Episodes of him having a little bit more normal moments.
[01:18:07] Speaker A: Yeah, no, I definitely think this is in your future because having lived with it for 26 years, you do learn how to manage it bit by bit.
[01:18:18] Speaker C: Wonderful. Well, thank you guys so much.
[01:18:20] Speaker A: Thank you, darling. It was really nice talking. You have a good rest of your day.
[01:18:25] Speaker C: You too. And enjoy your holiday.
[01:18:27] Speaker A: And we usually end the podcast by saying, happy napping.
[01:18:32] Speaker C: Happy napping.
[01:18:33] Speaker A: Happy napping, everyone.
[01:18:35] Speaker C: Happy napping. Bye bye, guys.
[01:18:37] Speaker A: Views and opinions in these stories may not work for everyone. If anything you have heard is relatable, please see a doctor for advice. Thank you for spending time here with us at narcolepsy navigators. I hope you learned something new. Please share the podcast with others. You can find us on all platforms. See you next time when we delve into another person's story.
