Episode 244: When Caregiving Redefines Life: Brooke Thomas and NMOSD
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Episode Transcript
Charlotte: Thank you so much, Brooke, for being here with
Brooke: us. Oh, my pleasure.
Charlotte: Why don't you start off with telling us a little bit about how you became
Brooke: a caregiver? Okay. So my daughter, she's my only child.
Her name is Ireland. And, when she was about six years old, she started to have some very strange symptoms. This would have been in 2008. And it started off with, two nights of just really, really terrible, back pain. It would be like back pain on her spine and it would feel like to her, she would describe it like lava on her spine, like burning.
And then it would be, like these, these moments of terrible stomach pain also where it would lead up to vomiting and it just, it was like, um, two nights of this happening. I would say it was happening in the night mostly because during the daytime I'd take, I took her to the doctor that next day.
And , she seemed to be okay. She had still some back soreness, but she wasn't doing the vomiting like she was the night before. Then that evening, the same thing happened again. Terrible, terrible back pain. And then the vomiting happening again. And it would just be, for many, many hours.
She could not get any sleep. And, and I was like, this is the weirdest virus, whatever. I don't know what this is. And, we did take her in again the following week. Just as a follow up, just to be like, okay, what, what do you think this was? And they didn't know a lot or thought a lot. They thought maybe, like I said, maybe a virus and, but I had this sneaking suspicion that it was something else because of the fact that I've never heard of anything like that.
It just didn't, it just didn't fit into, what I've heard other moms have to experience with their kids. But I kind of put it on the back burner. And then about six months later, it happened again, and it follows almost the exact same pattern, except this time it was double the length. It happened for about four nights this time.
And same thing, in the daytime, she'd be okay, but she was so exhausted, she'd be sleeping during the day, but at night she'd have this terrible back pain, the lava feeling on her back and then the constant vomiting and the stomach pain. Um, so then I , went back to the doctor and asked, you know, there's something going on here because this is the exact thing that happened six months ago.
And now we're seeing it again. And now, uh, you know, at this point it's, it's, it's extending, it's going longer and it seems like it's worse than what it was. I didn't get really anywhere, but at that point I felt very strongly that there was something pretty major going on because it felt like, well, obviously it's a pattern now.
And so I started taking her to other doctor to other doctors and specialists and the reason why there was other things going on too, I should say, something that came after that was she started experiencing leg weakness. I'd see her walk down the stairs in the morning and instead of walking down the stairs in the morning, she would sit down on her bottom and scoot down the stairs.
Now, this is weird for a six and seven year old cause this was happening during that time. We'd be at the grocery store and she'd have to be put in a car, you know, which is so weird for her because she had a lot of energy and all of a sudden she just would be, her legs would be hurting and in pain and she'd have to be carried or she'd have to be put in a car.
So that, that started happening. And I was trying to put all these puzzle pieces together and trying to find doctors that would like, listen, but we just, we just really struggled. So of course, the pediatrician went there first. They told us growing pains. They said, you know, all of that told her to eat prunes because maybe that'll help with the stomach issues.
But, you know, we, we tried everything. We tried taking her diet. We did a gluten free. We're like, what is going on? And then, um, it progressively got worse. She had another attack, and this one, we're calling, at this point I'm calling them attacks. Yeah. Eight, it doubled again. It's almost like, it was so weird, like, The perfect timing of it now going to eight nights from two to four to eight.
So this is not, this is not normal. And then shortly after that, again, he's trying to get doctors to help us. We got referred to a GI specialist, which they, all they saw was that she had H. pylori in her stomach, which is just the bacteria. They treated that.
And then we started going to other doctors in the same practice because that's all our insurance covered at the time. And that was a nightmare because it felt like, like the doctors that talked to each other beforehand. And when I got into that doctor's appointment, with another doctor, same practice, they didn't, they had no interest in hearing what was going on with my daughter.
And right from the get go, I could tell that they had walls up and they were. Not interested. And the doctor even told me I was obsessed with, yeah. And I'll never forget that because I, I walked into that appointment just very hopeful thinking that I would get help. And instead it felt just so defeating, you know, so left there and time progressed fast forward a little bit more.
And my daughter's at a dance recital. This is when she's eight years old. She was a little stressed because she was learning to dance and had to perform that night. Did good. And then that night she goes to bed and wakes up the next morning with pain behind her right eye. And she comes to me and she's like, mom, I don't know what it is, but it feels like I'm looking, underwater, like looking through an aquarium and that I,
So we took her into my eye doctor. And he dilated her eye and he was able to see that there was inflammation back there. And he pulled me aside and he was like, you know, it could be just optic neuritis. That's what he called it. Optic neuritis. But more likely it's attached to something else.
Like it could be something called MS, which would be multiple sclerosis, , or could be like a tumor behind the eye, something else that's pressing on it. That's causing inflammation back there. And so, of course, my mom bells are ringing like crazy, like, Oh, you know, my gosh, what is going on? And , he referred us to another ophthalmologist that day, someone that knew a little bit more about optic neuritis.
But this guy, he, saw Ireland, he saw the information and he suggested that we just wait for an MRI and wait and see, what the MRI shows. And so we did, we waited and I went home and started reading as much as I could about optic neuritis and what treatments are for that. And what I was seeing was steroids, so I kept calling that doctor cause we were waiting.
This was on a Monday that all of this went down and we're waiting and waiting and waiting to get in to get an MRI and there was just no availability. Yeah. I was contacting him and I was like, can we just get her on steroids? What do you think about steroids? And, he was like, well, from what I can tell, the outcome would probably be the same whether she's on steroids or not.
That's what he had read. But I was scared to death that she was going to lose her vision because every day it was getting progressively worse and we still hadn't gotten anywhere and by that Friday, I just had enough and I took her into the emergency room and, and I, you know, it, yeah, it was very frustrating to just feel like so much in limbo, like there's no one really picking up our case or trying to help us.
Charlotte: I mean, this is, this is how many years you've been, you were, this is two
Brooke: years. This is two years from the first time that it happens all the way up until when she, I ended up taking her to the ER that last time.
Charlotte: Yeah. It's a long time to feel like you weren't being listened to. Yeah. And your mom intuition was telling you there's, there's something going
Brooke: on.
There's a problem. And, uh, yeah. So in , that ER we did get a neurologist assigned to us because they did finally do an MRI and they did see the lesions on the, , on the optic nerves, but, he came and talked to us and he was like, and also with the lesions on the brain. And I was like, what are you talking about?
Yeah, and it was just so just like assuming that we knew stuff that we didn't know, it was, it was difficult. So found out then that there was lesions on the brain. and black hole lesions in the brain. Then also there was, inflammation on the spinal cord, but it was old inflammation.
So at that point, that's when we learned, that's what that leg weakness was that she was experiencing and all that burning on her spine. It was from that old damage that, we could see now in MRI. So all along it was just building, building this, this monster that would come and attack her.
Um, and now we could finally see it. Yeah. So you would think that would be the end of the story and it would be like, okay, now from there we've got, we've got proof that there's something going on, but I can't tell you. Treatment. Yeah. Right. But that's not, that's not how it went. It was still an uphill battle that two months later we called our docs because the other eye started having pain and she started having, um, not being able to go pee and our neurologist told us that he thought it was unrelated.
And so we, it was very difficult, we ended up going back into the ER again and she got an ophthalmologist to take a look. He did see it again, optic neuritis on the good eye. By the way, she lost all the sight in the right eye, and, so we were like, we, we got to move on this, and the reason why she lost all that sight was because she didn't get treatment for five days, now with this eye, , the ophthalmologist, told us to go ahead and, you know, they, admitted her in the hospital and she got treatment immediately on that eye.
And it saved it. She has perfect vision in that left eye since, yeah, and hasn't had a major attack since that time, but, it really, it really was a battle because we had tried so hard to get a team of doctors, but even when you thought you have doctors in place, it still can be difficult.
And that's what we experienced. Yeah.
Charlotte: Just. Having that stress of knowing in the back of your mind, that you're trying to have faith in the doctors that you have in front of you. Because that's what they're supposed to be there for, is to make care. The most important thing in that situation, in that relationship, and for them to do everything that they can to diagnose and treat.
Then you start to find yourself saying the same things over and over again, and feeling like you're kind of walking upstream, trying to have someone listen to, to say, these are all little things for a bigger thing that I just, I've been told and to have to go through all that, even after she lost sight in one of her eyes.
You know, as a parent, as it being your first child I can understand if there was questioning of.
You know, am, I making too big of a deal of this? Right. Right. Right. And saying that I'm, I'm being obsessed about it, but you were true to what you were feeling and, and pushing and advocating for Ireland and just saying there's something happening and just no matter what. Other doctors had told you or how they made you feel you were still the person that just kept pushing Yeah, really just going against what the feel was every time you went into one of those
Brooke: offices Right.
I think I've learned a lot like I still respect doctors our neurologist ended up sending us to another neurologist in Chicago and he was amazing. So I've definitely met good ones that really, know what they're doing and they're interested, they're curious.
And I love curiosity in a doctor because I feel like that helps them to power through it to figure this out, you know? But, uh, you know, we also had the flip side of that, which was a lot of doctors that were not interested or maybe too overwhelmed. To be interested.
And that was very frustrating. I, had put doctors on a pedestal for a long time before what we experienced and just assumed that they all knew what they were doing and that their word was All good, you know, but I've learned you just, you got to respect them, obviously, but you still have to advocate for your person because sometimes they just don't know, they just don't know, you know, yeah,
Charlotte: so Ireland's in the hospital now.
Yeah, yeah. And what. Is that when they finally were able to diagnose her?
Brooke: Yeah. So that first time when she went to, but when we went to the ER after the dance recital and the first eye problem, that neurologist that she was assigned there, he did end up sending her blood to Mayo, which was a great move on his part at that time.
He sent it from the hospital during that time. So then the second time when we contacted him and said, Hey, her other eye has got a problem and she can't pee. And he said it was unrelated. at the same time, on that same week, her blood came back. Timing was crazy. And so while she's in the hospital for the second eye, which the ophthalmologist caught and said, no, we were putting her in, he was giving her a spinal cord dose of steroids, which is, I guess, a higher dose.
That's when we got the results back that she had this disease. And at the time, they called it two different things. They call it devic's disease. And then the newer name is neuromyelitis optica. And now they call it, Neuromyelitis Optica Spectrum Disorder.
So it's, it's definitely transitioned through a bunch of different names, but it's still the same thing. And it's this inflammation of the spinal cord and it can be of the brain and, and of the, the orbits, the eyes and, this autoimmune disease where the body attacks these areas and it can lead to, well, paralysis, it could lead to, respiratory problems, which can cause tests, you know, and it's rare
but it does affect, a few people here in the U. S. even though it is rare. It's something like 16, 000 or 17, 000 people that get affected by it here. So you're,
Charlotte: you're, you're given this, diagnosis now, which maybe for a second was like, thank you. We finally have something that we can work on and towards.
And then your reaction next was what, what am I supposed to do with this information or right?
Brooke: So that neurologist he is the one that told us about it He did not give us any information because I think it was really new to him, too You know, he had not had another patient So we did go home and did our own research, which is a nightmare.
It's very scary to go look this stuff up yourself. Um, but I felt, uh, looking back at the two years of not having help. So there was relief with getting a diagnosis finally. There was something like justice, which is like, like, I'm not crazy.
There was something wrong with my daughter and now finally y'all are going to take a look at this, you know, so I'm grateful for that. I mean, I'm grateful that it's finally on paper and it's known now that there's a problem. But of course there's a lot of grieving because everything that you think was supposed to happen for your kid now has to be like reconciled to a new, a new, like, you know.
So all your hopes and dreams, you to reconcile your checkbook when the bills come in, that's what I had to do. I just had to reconcile everything and say, okay, well, I don't know if she'll ever drive or have a husband or even. I don't even know how long she'll live, you know, but these are things that we, had to, that's what grieving is, you know, looking at all of these things and trying to figure out, okay, well, we're going to still have a life, you know, even though we got this awful news.
So you
Charlotte: were instantly starting to grieve what she might not be able to do and grieving what as a mom, you might not ever see. Your child go through and yeah, there are a lot of benchmarks and things that go on in a child's life, especially since she was Yeah. She was young. It was still before her teenage years where she was finally diagnosed.
And what also probably didn't help was everyone else in her friend group was now going through all these things and you had the other moms who aren't going to really have an understanding of what it's like.
Totally. Yeah. You know, a day you get a diagnosis and you're like, holy crap, this completely changes all of our lives. Right? Right. Right. So how did you find yourself handling now having to go through a grieving period and then maybe coming to accept what you had to in order to be able to support her or also to support your family and yourself?
Yeah.
Brooke: Yeah. You know, I think we, we became a little more nuclear as a family, you know, she was enrolled in school at the time we, she took, we had, she missed, she was in the hospital 40 days that first after diagnosis with different, flare ups and medium treatments and stuff.
So it was a lot of us just staying together. My husband took some time off of work and I ended up having to basically quit my job. I was doing wedding cakes, and I couldn't, like, how do you schedule a bride's wedding cake? If you don't know if you're going to be in the hospital or not, you know, so there was no way I could do that to someone.
, so yeah, our lives were just totally flipped upside down. We had some good, family around us that were kind. And we're caring, you know, but we kind of just went into our own little rabbit hole and stayed there because, we were really, honestly sad, really sad, you know?
And it took us a little while for us to pop our heads out and go, okay, I guess we need to get back into community with people. But it didn't happen right away. Yeah.
Charlotte: So you kind of cocooned and isolated as a family unit. Yep. To try to get to feel which, it might not look like it, from the outside, but I'm sure it felt like the healthiest thing that the three of you could have done.
I, I see it that way because if once you have a diagnosis that is as serious as that, The first thing that happens, is people start asking you, what does this mean? And what are you going to do? Asking you all the questions that you don't have answers to. Oh, it's
Brooke: so true. And
Charlotte: then, you know, I'm sure that someone in your family Googling something and then trying to talk to you about it would not have been a very comfortable conversation to have because neither one of you still would have.
Any information that would be useful. Right. So to put yourself in a place where you're not trying to just continue living your life as it was, yeah, and taking a break from everything to just figure out and to allow all of you to feel what you were feeling, right, probably helped all of you become stronger together.
Brooke: I think it did. I, I totally think so. Yeah. I think one of the things that we experienced was because people didn't know what this was. A lot of people thought it was like cancer because she was using medications and the way that those medications were happening. They just assumed it was like cancer.
And so we had so many questions of like, so she's done treatment now, she's better now, that's amazing, you know, but how do you explain to somebody no, she's going to have treatments for like the rest of her life until they come up with a cure. So, I mean, we did, we did try to explain that to people, but at a certain point you get tired of trying to tell people that there is no finish date for this.
There's no, now we're done so that was difficult. And part of the reason why we went into hiding was because we were just tired of, of feeling like we kind of had to act like things are better when they weren't better, you know, right. They just weren't. Yeah.
Charlotte: Yeah. Yeah. I find that when it's, when the disease is chronic and it's not curable, people start to lose interest after a while,
Brooke: or it comes up.
Charlotte: It comes in waves depending on treatments or surgeries that have to come up or, maybe flare ups with Ireland or benchmarks that they're able to actually make it to that now have more meaning. Right. But then in the in between, it's, The two of you helping her when as good as a support system as you might have, there may have been times where you felt like either it was easy to just keep it in house.
Um, any of the support you needed to give her, or the support you needed. Because. People don't like a story that never ends, that just keeps on going. So true. Yep. And they lose focus. Yeah. They want a happy ending.
Brooke: Yeah. Right. No, they just want the happy ending for you. Yeah, everybody wants that happy ending.
Yeah, yeah, for sure. And when
Charlotte: you tell them that's not the way my life is going to be, Right. It's really hard. Yeah. It's like watching a movie and, you know, the people didn't persevere and Right. Everybody hates this movie. They
Brooke: just don't want to watch this movie. That's right. Yep, that's exactly what it is.
You're
Charlotte: living it, and as much as they probably wanted to, be there all the time, It's always good to have people in your life that are like that, because not everybody does, but also at some point, you have to like really kind of go inside yourselves to figure out, well, what are we going to do?
I have these uncomfortable emotions. Should I just, continue to work and try to make it work? Try to live the life that I was living, you know, two months ago. Yeah. And just push everything emotional down and not address it. I don't think that I've heard of a lot of, people who have had themselves in a situation like this as a family who have said, you know, we're just going to take a break and figure out what this means.
Right. You know, we're going to make it a little bit quieter. We're going to make activities a little less. We're going to, save our energy and, go through what we're feeling and then see what decisions we have to make to, support the life that we can live and want to live moving forward.
So I think that was a really good thing to do. Yeah.
Brooke: And, and at a certain point, we kind of came out of that where we felt like we needed more, we needed to find people that were also experiencing what we were experiencing. I was driving by a church and I saw that they were having this grief group and I remember thinking gosh, like we're in this in between place where we're like pre grieving something that hasn't happened, but we're afraid will happen, but we're also grieving what has happened and what we feel like we've lost.
And there's no grief group for that, in my mind, I'm thinking that, and I just remember thinking, well, maybe there is, maybe you just need to go look, I think that was the beginning of that, where I was like, okay, so now it's time to kind of peek my head out and say, okay, who else is going through this and what can, you show me?
What can you teach me? Do I have hope for the future? Because I wanted to hear other people's stories and go, okay, yeah. This does not always end badly. So we needed to see that. And so then we started looking for other communities and groups and we found them good.
Charlotte: Yeah. Yeah. Were any of them local? Or was it all virtual? No.
Brooke: Yeah. Yeah, virtual. So so it's still so rare, but we did find some, some communities, there was a, a community that had a camp and it was for transverse myelitis kids. Now Ireland does not have transverse myelitis.
So I contacted them and I was like, Hey, your disease is close to my daughter's disease. Would you, would you consider letting her come to your camp? And they were so awesome. And they were like, yeah, they were called the transverse myelitis association. Their name has changed too. So since then it's Siegel Rare Neuroimmune Association.
So that that that was amazing that they kind of took us on. We've also met others we met Guthy- Jackson Charitable Foundation out in California. We ended up flying out there to go to one of their things to find that's when we actually Ireland, that actual face to face patients.
So that was amazing. And since that time, you know, it's been, I feel like almost like there's been repayment for those years, that we didn't feel like we were heard. I would say since then, we've definitely had people that are interested in our story now. And so, there's, there's one group and they're called, Horizon Therapeutics. But now they're called Amgen and they started a group, a website called NMOSD Won't Stop Me, and it's their campaign. And it's, uh, NMOSDWontStopMe.com. And that's where, they asked us to share our story and it's been really amazing just to be a part of that, to be a part of that campaign.
So in a lot of ways, it feels like we weren't heard. And now it feels that we have a voice and that we are heard and that there's actually like Ireland, my daughter is partnering with doctors, and telling her story and they're using bits of her story in different.
Things that they're creating, doctors are creating. So it's like, how is this even possible? Because we came from feeling like, yeah, totally unheard to feeling, uh, feeling heard. Yeah. So it's, it's pretty cool. Well,
Charlotte: and you really leaned into being that person to advocate for, then it sounds like it kind of changed your perception of the medical profession.
Yes. You're sharing your story, Ireland is, actually Given the chance now to speak her story as well, which I'm sure at the age she's at now, , is really valuable and helpful in her processing still what it is to live like this as she's going into new stages of life.
How does that feel now, to be able to be a part of that you're the person that people are looking for in a group of people that is very small, that are sharing their stories and, giving other people hope where you felt so alone, it seems, especially before , Ireland was, diagnosed in, in this world of.
something that you felt was really important for someone to tell you what it was, but no one would take the time or was able or had the education to be able to tell you what it is she was going through. It is,
Brooke: uh, it is so honoring. I mean, it just feels so honoring to be invited to be a part of these campaigns.
, I can't even describe it because of what we went through. And the trauma also, it's very healing to the trauma that we've experienced. It's almost Like, it's almost like God knew what we needed, because there was so much trauma was feeling like not heard and, to be able to sit down with doctors, in these environments that we've been in now, we've been able to sit, in round tables and on panels with doctors, like what, how did we get into this place and, and what did we I don't know.
It's just an awesome experience. And it surely has made up for what we've gone through. It really has. I mean, for other people that are experiencing the same thing we've experienced, I hope and I pray that same outcome will happen. If they feel unheard or they felt, that they were not seen or significant in their journey, that, they too will experience, just healing in that because there's a lot of trauma involved with that.
So that they'll just experience that same healing that we've had, which is, is to, to be in community where people can help you they can give you a hand up . It is really cool. I mean, my daughter was saying, I was driving her this morning and, she was mentioning how.
She does feel like people know her like she's a name when it comes to this disease and I was asking her about that I was like, well, how does that make you feel that you feel known? Yeah And and she was just like that just makes her feel so good To be known, you know, finally be known.
So it's beautiful.
Charlotte: That's awesome for her to be able. Yeah, she has a voice Yes.
Brooke: Yeah
Charlotte: Yeah. So Ireland is how old, she's a teenager now, right?
Brooke: No, no. Fast forward a lot. So she's 21. Can you believe that? She's 21. That's crazy. That's
Charlotte: crazy. That goes really fast. Yes, it does. So, you've been through all of this, helping her through everything that she's had to go through, including after the diagnosis, then still navigating whatever.
You had to figure out and it probably changed over time too as there's more education for the doctors and more understanding of, her disease. But what about you? What were the things about you that you held on to, or that maybe you had to let go of that you, that you may still miss?
Brooke: Yeah, I think giving up. Well, like my what I thought would be like my career and doing cakes Maybe it was a blessing in disguise, you know, like it's stressful. It's really stressful so in a lot of ways that's actually turned out to be better than I thought and I'm doing great. I'm still doing creative work but it's not nearly as stressful as wedding cakes is.
So I'm grateful that ended and I think when I look back at where I've been and where I've gone, I think in those first years, I had a really negative mindset for a very long time after I was diagnosed,
I always expect the worst. , but I realized I was wrecking my own life and wrecking everybody else's life by being so negative about the future. So at about five years after diagnosis, that's how long it took five years. I think that's when I had a mindset change and I was like, okay, I need to change that.
Like I need to start to just view this as, um, get the positive things I can get from it and the future that she has also to five years. I think to me, it felt like I was trusting more of that. , her health was going to be okay, you know, even though she's had hiccups at five years, I was like, okay, it's almost like putting the other foot down and testing it and you're like, oh, this feels pretty sturdy.
Yeah. Yeah. And it just took that long. So I, I definitely look back at the time and I go, okay, yeah, so that negative time and positive time and so much has changed for me since taking on more of a positive mindset. And seeing that there was good in all the stuff that we experienced. There's a lot of good in the stuff we're experiencing now.
Yeah.
Charlotte: Well, you have to be really vulnerable to allow yourself to. Hope or expect. Yes, something good to happen. And it sounds like you were hurt so often for so long just from the medical community. That it just really makes sense to hear that you were looking. Or expecting the negative or the worst thing to happen because you weren't given any opportunity to see someone help or something to actually work out or for something positive to happen in trying to get her diagnosed
I would be angry. Yeah. After her being diagnosed, I, I would feel anger, because of everything that was missed every time that you went in to, to take her to a doctor. For everyone that told you that you were making it up or that you were obsessing about it. Right. I don't know. I mean, you finding that positivity probably was the best thing for you because someone in your position could spend the rest of their lives angry.
That's right. It got to this point, right?
Brooke: Honestly, like the fact that, am Jen reached out to me and they were like, Hey, do you want to do this? Like if they had asked me that in that first five years, I would have been like, no way, you know, cause I was not in that mindset.
Where I could see the positive or even see the benefit or even see how it could help others. Really? Yeah, but now I'm in a place where when they reached out and they wanted to tell our story I was like, how awesome is that? First of all and second of all I do think it can help other people you know, after I started experiencing, what other people were saying and really diving deep into other people's stories, then that gave me hope,
Charlotte: yeah.
And you're, telling a parent right now, you're not alone. Right. And here are some things to look into with the organizations that you mentioned, because maybe if they they had existed when Ireland was having those symptoms and not having them diagnosed correctly, maybe it would have given you an idea of maybe a doctor to go to other than who you already saw.
Brooke: Right, right. Sure.
Charlotte: Yeah. So as a parent seeing Ireland go through life, how has that been? It's been
Brooke: good and bad. So she's had delayed, milestones it's more like delayed as in like, she just recently, and she's okay with this, but she just recently had a first boyfriend and a first kiss, so things are delayed and along with delays comes other things where it's like, now it's me, like.
Letting go and just being okay, this is stuff that moms did when their kids were like 15, 16, and I'm doing it at 21 because everything got pushed back, because of all the, years spent on recovery , so it's, it's, uh, it's a journey and then it's me learning to like, okay.
Because this morning she actually flew by herself to go visit some other friends in Orlando. Okay. And I'm scared to death, but first time she's doing anything like this, but she's an adult and I'm scared. I even mentioned to her. If there's anything that goes wrong with your health while you're there, she didn't even want to talk about it, but she knows what to do.
That's why she doesn't want to talk about it. She knows what to do because we've gone through this stuff, but I don't, I'm like, I'm here today. Which is more for
Charlotte: you. Yeah,
Brooke: I'm like, you need to tell me what you're gonna do. Yeah, so yes. It has to be difficult,
Charlotte: Figuring out if what I'm feeling is simply a parenting moment, or is it, because of the disease and all of the history that we've had with her medically.
Sometimes it's probably all intertwined together and since parents never know what they're doing at any given moment, most of the time, , the history of you and Ireland coming behind this decision of Okay. I'm going to be okay with her going. It's such a pivotal moment and you being a parent because of everything that you've been through, because when you have a child that you've had to fight for to stay healthy, going through this fear of loss
Brooke: that you don't
Charlotte: understand and you're like, and then I'm letting her go.
Like, I
Brooke: worked so hard to keep her around a week ago. I know, we kept you alive. Yes, that's exactly it. Yeah, but my husband is keeping me sane. Yeah. I'm going to try and do a lot of activities this week while she's gone. This is one of them, a podcast. I'm just going to get
Charlotte: my mind off of it. Yeah. But congratulations on being able to have
Brooke: that moment.
Yes. Yes. I mean, you know, and thank God she's in a place where she can do that. I deliver her to an airport and she gets on an airplane and goes someplace and she can do it without me. I know she can do it. It's the first time. I'll let you know how it goes. Yeah. I'm believing in her. She's
Charlotte: going to be okay.
And you will in the end. It might, it might be a little difficult in the in between. Yeah. Right. Right. Oh, man. So, Let's say a person Who is a parent of a child who has just been diagnosed with , NMOSD, and I'll put a couple of links in the transcripts for people to go find, what would you tell
Brooke: them?
I would definitely say I think what helped me was looking for other patient stories to see long term, where they're at, where they were and where they're at now. I found a lot of that. And that helped me to know that there's hope, that the things that they're going through, it's terrible, but that there's a lot of hope.
One of the things we live with here for the first couple of years, because in her particular disease, a flare could appear to be a flare, but it might just be these old symptoms coming up, but they're, like pain receptors and all that's happening, but it's not necessarily a new flare.
We didn't have like a checklist at the beginning that said, okay, if this, this, and this is happening, then you take it seriously. We didn't have that at first. I don't think that existed at that time when she got diagnosed in 2010. But I know it exists now.
So , that's so helpful, to be able to go, , is this happening? Is this happening? Is this happening? If it's not, then let's wait a little bit, but if it is, then let's move. We needed that, those, those clear lines and that I think helps. I know that it helps us once we got those in place and I think it can help other patients too.
They just need to know about them. Yeah.
Charlotte: Yes. Definitely finding other people who are currently in the situation that you're in or have. Already been in it and have moved past you know, it's always good to see, how people are living with a disease and trying to figure out what's the worst case scenario, which is what usually people do when, their loved one is first diagnosed, , and to find the positivity that is out there and the
positive outcomes that are a potential you're always going to move into a new diagnosis with some sort of fear, but to be able to have something to tell you, but there's also more. So I'm happy that we're able to share your story so that other people learn and may even hear some of your story and think, well, wait a minute.
These are things that have been happening with my child. Maybe I need to look into this or ask my doctor a question about it.
Brooke: Yeah,
Charlotte: yeah, for sure. Yeah, so thank you so much, Brooke, for being on here with me. Yes, absolutely,
Brooke: my pleasure.
Charlotte: Thank you
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