Emotional and Cognitive Empowerment in Rare Neuroimmune Disorders

[00:00:00] Dr. Danielle Eagan: Fatigue certainly plays a role. And you know, I tell people all the time, you could be 18 and completely healthy. You're in the prime of life. There's nothing wrong with you. But if I sleep deprive you for a couple of nights, you're not gonna think clearly and you're not gonna function normally. So if you have that every day of your life where you're just tired all the time, it's certainly blunts your thinking abilities. [00:00:23] Introduction --- [00:00:23] Meghan Beier, PhD (3): Welcome. I'm Dr. Meghan Beier. In episode two, we are returning to the world of rare neuroimmune disorders with Dr. Eagan a neuropsychologist. As we explore the complexities of rare neuroimmune disorders. Let's first hear from someone who lives this reality every day. The personal stories you will hear throughout this episode, help to shed light on the unique challenges individuals and family members face. Offering us a deeper, more personal understanding of the topic. Then we will move into a more academic understanding with Dr. Eagan's expertise. [00:01:00] We start by hearing from a young woman named Ireland. [00:01:03] She describes her experience with brain fog. Please note, there is some interfering sounds in the background. [00:01:10] Episode Content --- [00:01:10] Ireland: Yeah. I would definitely say a big thing in our community is gonna be brain fog and fatigue. Uh, brain fog we would describe as just like, sometimes it's just difficult to, you know, build a sentence or, or just, um, fully understand the thought. Sometimes it just, you know, rolls off a tongue, but sometimes you do have to really, um, grab words. [00:01:30] Uh, I would definitely say that in a recent article I read about it, uh, there's a lot of mental health issues. Could be caused by certain lesions in the brain, that sort of thing. Uh, I would definitely say that, um, I don't feel that my brain lesions prevent me in any way, but I would definitely say I have a propensity to be anxious and depressed. [00:01:50] So I would, I would definitely say it does go hand in hand. Um, problems with the brain is gonna impact how we live. [00:01:57] Meghan Beier, PhD (3): / [00:01:57] Ireland's experience really brings to light the everyday challenges of cognitive dysfunction or brain fog. A common, but often misunderstood symptom of neuroimmune disorders. It's not just about forgetfulness. It's about how these cognitive changes can really affect someone's life. Now let's shift our focus to a professional perspective. We will hear from Dr. Eagan, a neuropsychologist who describes the cognitive and psychological impacts of neuroimmune disorders. [00:02:28] But before we hear from Dr. Eagan, a reminder for our mental health professionals. You can earn continuing education credits for listening to this episode. Just click the link in the show notes. [00:02:41] Additionally part of the proceeds from this series will be donated to the Siegel Rare Neuroimmune Association. This contribution supports individuals like those heard in this podcast series. Now Dr. Eagan, she starts by providing the definition of a neuropsychologist and describes her professional background. [00:03:03] Dr. Danielle Eagan: Yeah. So, um, a neuropsychologist is somebody who, as the name sort of implies. Uh, works at the, the juncture of neurology and psychology. So we assess, uh, the cognitive consequences of different neurological disorders. So that could be something like a brain injury or an autoimmune condition or dementia. [00:03:24] Um, but we also make sure that we're taking into consideration a person's psychological functioning. So to what extent symptoms of depression or anxiety or other more serious psychiatric illnesses are influencing their thinking abilities. [00:03:38] As far as my background goes, I did my PhD at the University of Texas at Austin. [00:03:44] And then, uh, to become a neuropsychologist, well first to finish the PhD, you, you do an internship, which I did mine at, uh, Emory University School of Medicine. And then I did my fellowship, which was my specialty training in neuropsychology at McLean Hospital. In Belmont, Massachusetts. Um, so McClain is a psychiatric facility, so I actually got, um, in addition to my neuropsychology specialty, I got a lot of exposure to psychiatric disorders as well. [00:04:11] Meghan Beier, PhD: How did you get into seeing people with rare neuroimmune disorders? [00:04:17] Dr. Danielle Eagan: Well, to be honest, I developed an interest in them while I was doing my fellowship training. Um, my husband and I had decided to get married during that time, and my husband's dad had been diagnosed before I even met him with primary progressive ms, which is. um, you know, a very devastating illness and his had progressed pretty quickly. [00:04:40] Um, so he was quite disabled by the time I met him. Um, I think when I met him, he could still use his right hand a bit to move his power chair, um, and to use his laptop. But in the, you know, few years just while I was doing my training, my fellowship training, he declined quite a bit. And, um, You know, soon wasn't even able to use his, his fingers. [00:05:05] He was really, uh, essentially locked in towards, towards the end of his life and was using his eyes to, to move his mouse on his computer screen. And his, his speech was pretty impaired at that point, and unfortunately he passed away a few years ago. So that kind of, um, Got me really interested in the subject of neuroimmune diseases, um, and how the, the intersection of the immune system and the nervous system interact with one another. [00:05:33] Um, In my, uh, doctoral training, I had studied, uh, infections and how infections in inflammation affect thinking abilities and cognition, both in a a chronic situation. So if you have a lot of cardiovascular risk factors and you have chronic inflammation, how that changes cognition. But then also in acute infections. [00:05:54] Um, I was really interested in HIV, so I sort of got my. my background in the immune system and the nervous system through the infectious side of things, and infl my interest in inflammation. And then that translated really well when I developed a specific interest in ms, is how it really started, um, when I met my husband and my father-in-law. [00:06:16] Meghan Beier, PhD: How common are mental health disorders in these kind of more rare neuroimmune disorders? [00:06:23] Dr. Danielle Eagan: I think they're very common. Um, so just by virtue of the fact that you have a rare disease, can often provoke symptoms of depression and anxiety in somebody. Um, MS, although it's not particularly rare, you know, it's, it is the most common neuroimmune disease tends to present with a lot of depression. Um, some people think that it's actually a core feature of the disease is, is depression. [00:06:49] Um, many of the neuroimmune conditions also come with a lot of fatigue and low energy. Uh, so that can contribute to symptoms of depression. And just also the, all of the worry that comes along with having a chronic illness. Um, and sometimes people have to go through long periods of time where they're undiagnosed and they're working through the medical system and seeing a lot of different doctors. [00:07:12] And that obviously provokes a lot of anxiety too in some of the more, um, fulminating conditions like autoimmune encephalitis that come on suddenly. Uh, sometimes the presenting features are what appears to be psychiatric illness. So, um, someone can have radical personality changes, they can be hallucinating. [00:07:34] Um, really significant behavioral change that gets everybody's attention and often gets them admitted to a psychiatric hospital, which is not where they should be. Um, So, you know, just for all your listeners, if you know someone who's an otherwise healthy and well-adjusted person who suddenly has radical personality changes and, uh, symptoms of psychosis, then you should take them to the emergency room and have them worked up for autoimmune encephalitis, um, or, you know, paraneoplastic syndrome or something like that. [00:08:05] So I think that, uh, it. , you know, symptoms. More commonly you're gonna see symptoms of depression and anxiety just by virtue of having to cope with having a rare disease. And, um, less commonly you'll see symptoms of psychosis in certain conditions. [00:08:21] Meghan Beier, PhD: I know that you really focus on the cognitive side of things as well. How common are cognitive changes and what kinds of cognitive changes do we typically see in these kinds of disorders? [00:08:33] Dr. Danielle Eagan: Yeah. So, uh, cognitive changes really, it depends on the disorder and if the particular o autoimmune condition is, is attacking the brain versus the other parts of the nervous system. So you have conditions that attack exclusively the brain. You have conditions that attack the brain and spinal cord. Um, you have conditions or, or both, you know, brain, maybe I said that brain and spinal cord. [00:08:59] Um, or those that attack the peripheral nerves. Um, in which case you really wouldn't expect to see many cognitive changes, um, if, if the, the disease is affecting exclusively the spinal cord or the peripheral nerves. It's really when it attacks the brain that you're going to most likely see some cognitive changes. [00:09:16] The things that come up most often are, Slowing. So because the, and, and we're gonna kind of separate out people who are dealing with really acute symptoms of psychosis or seizures or something like that. Because although those can be present in neuroimmune conditions, um, Once they're treated, once you kind of resolve, uh, the, the immune activation and get the person kind of back to their baseline and you're controlling their seizures, hopefully as long as you can keep all of that under control, they should be fine cognitively. [00:09:50] Um, if seizures are chronic afterwards, then people definitely develop cognitive difficulties, problems with memory, problems with executive functioning due to their seizures. But if you're just dealing with one of. The chronic conditions. Again, I, I feel like I'm always coming back to ms, which is the, the most common, but it's also the one that is most likely to, uh, cause chronic cognitive problems in somebody because it's, it's damaging the. [00:10:17] The coverings of the nerve cells in the brain, so that, just like the insulation on, uh, an electrical cord, if you strip that insulation away, the electricity can't pass efficiently through the cord anymore. So nerve cells operate similarly. They're wrapped in a myelin sheath that provides insulation and. [00:10:36] And helps with conductivity within the, the, the nerve cell, so the electrical impulse can move very efficiently and if you take that mylan away or it's damaged, um, by the disorder, then then thinking really slows down quite a bit. So you'll have reduced processing speed. And retrieval deficits often, and a retrieval deficit means that you know the information that you want. [00:10:59] You just have a hard time getting it out. So that could be memory, for example. Um, you had a conversation with someone yesterday. and gosh, for the life of you, you just can't remember all the details of it or you can't remember somebody's name or you can't remember the word for something, um, that you use all the time. [00:11:20] So those sorts of difficulties were, the information is still in there, but it. It might, it might take you so long to get to it at times that by the time it does come back, you, you really no longer need that information. So that can be very frustrating to people. So it, and it looks like, uh, a memory difficulty. [00:11:37] I mean, it is a memory difficulty, but the difficulty is arising, not because the information has been lost per se, but because you're having difficulty getting to it. So memory problems. Speed of thinking problems and, uh, problems with more complex aspects of thinking, which we call executive function. So that could be problem solving or multitasking. [00:12:00] I get a lot of complaints that, that people have difficulty multitasking. Um, Uh, especially, you know, if they've been, if their disease is more progressed, you know, kind of keeping track of different things, staying organized can become much more challenging. And then if you layer some fatigue on top of all of that, then you know, it really becomes a challenge to kind of keep up with day-to-day activities. [00:12:23] Meghan Beier, PhD: you were mentioning sort of some of these disorders may mainly impact the spinal cord or some area away from the brain. Um, so I'm thinking like transverse myelitis, for example, um, we might not see cognitive challenges like you're describing, but [00:12:39] I still sometimes hear people say that they have cognitive challenges, even if there isn't lesions in the brain. Why might people feel like their cognition is impacted? Even if they did testing and the testing was normal? [00:12:54] Dr. Danielle Eagan: Yeah, I, I hear that all the time . Um, so yes, it, it is true that, um, even people who don't have brain involvement can experience, uh, subjective cognitive changes. Um, oftentimes when we test those people in the clinic, they actually look pretty good on testing. Um, And fatigue certainly plays a role. And you know, I tell people all the time, you could be 18 and completely healthy. [00:13:21] You're in the prime of life. There's nothing wrong with you. But if I sleep deprive you for a couple of nights, you're not gonna think clearly and you're not gonna function normally. So if you have that every day of your life where you're just tired all the time, it's certainly blunts your thinking abilities. [00:13:36] It makes it harder to work through problems. Um, it makes it harder to stay focused, and if you're not focused, you're not taking in information very effectively, and then you're not remembering it very well later. So, Certainly we see that. But then if you put somebody like that in a very structured environment, which is what we do when we bring them in for neuropsych testing, um, and you give them very specific tasks and they're only doing one task at a time, and they have someone sitting with them explaining everything that they're supposed to do. [00:14:05] This is, this is a high level of structure. Um, and most people who don't have brain involvement can do quite well in that situation. Um, however that situation is. Unlike our day-to-day lives where we're constantly challenged by a lot of different distracting and competing demands, and it becomes harder to keep track of all of that information. [00:14:28] So I frequently have people who do well on testing in the clinic. , but have a lot of functional problems in their day-to-day life because they're tired and because the world is a, is a very demanding place and the clinic is a less demanding place. But what we learn when we put someone in a structured environment is, well, number one, are they able to perform within a range that we would expect based on their background? Um, so if the answer is yes, then we know, okay, they at least have that capability in the right kind of environment. And if no, then we can start to pick up on specific patterns of impairment that might point to solutions. [00:15:07] You know, how can we best treat these difficulties? Are they due to damage in the brain, you know, some sort of problem with brain tissue, or are they due to other factors like fatigue or depression or pain or sleeping problems or stressors in the home environment, you know, and then we can try to fix those things. [00:15:27] / [00:15:27] Meghan Beier, PhD (3): You just heard Dr. Eagan shed light on a critical aspect of neuroimmune disorders. She explained how individuals can experience cognitive challenges, such as brain fog or memory issues even in the absence of brain lesions. This paradox often leaves many feeling misunderstood, as their struggles aren't always visible or easily quantifiable through standard neuropsychological testing. To delve deeper into this experience and to understand it from our firsthand perspective, let's turn to Cyrena. Cyrena has faced cognitive challenges herself. [00:16:02] Yet her neuropsychological assessments have come back normal. Her story is an example of the complexities that individuals with neuroimmune disorders often have to navigate. [00:16:13] Cyrena Gawuga: Yeah, I definitely have cognitive issues that, you know, severity of them, sort of waxes and wanes. Don't have brain lesions, like have that had that confirmed through like six MRIs, . Um, but I think the inflammatory process that happens to all of us. Obviously affects the brain. Um, you know, that's sort of what I did my, like PhD research on, which, you know, like, you know, my personal experience influenced like my, my research. [00:16:45] But, um, you know, I, I definitely, the, the, the inflammatory processes. , um, of any of these conditions affect the brain. And so I do get brain fog. Sometimes I will stop in the middle of sentence and forget like what I was talking about. Um, sometimes I'll pause, uh, you know, word finding can be a, an issue. I'll sort of pause and I find myself apologizing. [00:17:09] about it. Like, oh, I'm really sorry, I can't remember the word that I'm looking for. And then just sort of plowing ahead and fatigue is also really huge. Sometimes I just can't think because I'm so tired. Um, and you know, I think also medications that we take can, can, you know, sometimes affect cognition as well. [00:17:32] Um, I'm on Imuran, which is an immunosuppressant, and I find. It ha it sometimes dulls my, my thinking processes and I'm sure there are other medications like, you know, steroids can often cause mood issues as well as cognitive issues. Um, and you know, I have had neuropsych psychology testing before and. You know, I don't know if other peop, you know, if this is something that other people do. [00:18:03] Um, but you know, the, the, the issue I found was that, um, the assessments don't necessarily get to the core of the problem. They're not des, you know, the typical neuropsychology assessments are not designed to deal with things like brain fog or cognitive, uh, or executive function issues due to fatigue. they're, they're very much, you know, um, Processing like stuff. [00:18:32] And it's like, I took the test and I did extremely well and neuropsychologist was like, I am really sorry that this doesn't help you in any way. Um, you know, she's like, If you function really well, normally this test may not pick it up, and so if other people you know, I just wanna say like for a neuropsychologist who might be working with people who want, you know, neuropsychology testing, it's highly possible that it's not going to diagnose any problems using the typical battery cuz they don't get at. [00:19:08] Um, you know, word finding issues. They don't get at, you know, stopping in the middle of sentence. They don't get at the fact that you left your phone in the fridge, you know they don't, they don't do those, those sorts of issues. And so I, I, you know, I, I would say that one of the, you know, especially now with Covid and a lot more people, long covid, people having brain fog is one of their big things, like having. [00:19:34] You know, research into the causes, but also research into like, you know, symptom management. Would be really, um, important because right now, you know, I'll say to my neurologist, yeah, I'm having cognitive issues and be like, yeah, I don't know what to do about that I'm really sorry. Um, but we can't really change anything in your treatment. [00:19:59] Or you might have another Yeah. Episode. So, um, yeah, that's, I think, I think that's what I would say is. Let's figure out how to, to, to really help people. [00:20:13] [00:20:13] Meghan Beier, PhD (3): We just heard from Cyrena who shared her experiences with cognitive challenges, despite clear neuropsychological assessments, her daily struggles with cognition have been real and impactful. Now we'll we'll turn back to Dr. Eagan, Dr. Eagan shares her thoughts on how medical professionals should approach subjective cognitive difficulties. [00:20:32] Like you heard from Cyrena. And when to refer to a neuropsychologist for testing. [00:20:39] Dr. Danielle Eagan: Immediately. Um, I, I would say that um, if someone is having subjective cognitive complaints, um, that's a great reason to refer them to a neuropsychologist, particularly in the setting of a neuroimmune condition. Um, and. If nothing else, you know, the best case scenario actually is that we have a normal exam. [00:20:58] Um, then we can provide some reassurance to the patient and we have an excellent baseline. So if this is a condition that, um, maybe isn't going to resolve completely and it is gonna be a chronic thing, then that, and we may expect changes in the future, then that gives us a nice clean starting point. We know on this date the patient's cognitive performance looked like this. That way in a year, or in two years, or five years, or 10 years or whenever. We can test them again and see what has changed over time. And that can provide some insight into what parts of the brain are involved or how quickly a disease is progressing and what other, um, tools we might need to give that person in order to function to the best of their ability. [00:21:44] Meghan Beier, PhD (3): Understanding the neurologic and cognitive aspects is crucial, but it's also vital to address the mental health challenges these conditions pose. Let's dive into how these disorders intertwine with psychological wellbeing. Here again, Dr. Eagan describes challenges that can trigger or exacerbate emotional distress. [00:22:04] Dr. Danielle Eagan: I definitely think that loss of employment is a big one for a lot of people. Um, for obvious reasons. You know, it can. You to financial instability. Um, you're often changing roles within a family or a household too, and that can be very stressful. If, um, a person is used to being the, the, the main caregiver of other family members, they may have a really hard time adjusting to the idea that they actually have to receive care now. [00:22:34] And not be the main caregiver. I see a lot of distress in parents who are trying to care for young children who then, you know, aren't able to, or aren't able to, to the extent that they could previously. That causes a lot of depression and a lot of distress. Um, and also just kind of feeling bad, physically unwell all of the time causes a lot of distress too. [00:22:59] I have some people who even when they have. Social support, you know, good, good home environment, lots of help. They feel a lot of guilt about being, uh, you know, quote unquote a burden to other family members and maybe having to shift their role in the family because of that. I think that's a big trigger. [00:23:18] Someone feeling as though they're, they're burdening other people that they care about. [00:23:23] Meghan Beier, PhD: Yeah. [00:23:24] Dr. Danielle Eagan: So, you know, really anything that that changes, uh, a functional adult person's role and, and kind of self-concept, I think can cause a lot of distress, especially acutely. And then hopefully as the person adjusts to their diagnosis and develop some coping strategies and some compensatory strategies for dealing with their day-to-day difficulties, um, usually people can learn to manage. [00:23:49] that distress over time and it, and it does start to abate with time. I, I see that happen more quickly in situations where people have good social support. [00:23:58] Meghan Beier, PhD: In the first episode we learned from Dr. Blackburn that diagnosis and navigating the healthcare system can be a huge source of frustration for patients and family members. Dr. Eagan agrees with this theme and shares here, why it's such a huge source of frustration and distress. [00:24:16] Dr. Danielle Eagan: I see a lot more frustration because it may take a lot longer to get a correct diagnosis, and that means that the person has spent already. Often a lot of time in the medical system, um, and a lot of time kind of rehashing their symptoms with physicians who don't have good answers and don't have treatments. [00:24:36] Um, and that's j you know, and then when they finally arrive at a diagnosis, you're also dealing with a condition that's much more progressed than it would've been if someone had recognized it quickly. [00:24:46] So I've seen a few cases of. Unfortunate, you know, gad antibody encephalitis, for example, that went unrecognized. [00:24:55] A person developed seizures that were, you know, orally managed for quite some time, and, and had that person as a result had long-term permanent residual cognitive deficits. So, understandably, the family is really upset about that. Um, The, the patient is upset, you know, it, it, it really requires a major restructuring. [00:25:16] So I think that the, the length of time that it can take to get to a diagnosis often increases frustration and, and unhappiness, in patients and families. Uh, so I think that's unique. Um, . And then also just the, the feeling of aloneness. Once you do get a diagnosis and you learn that it's rare and that maybe there aren't good treatments for it, or that the treatments that are available are experimental, or that maybe your only option is to participate in a clinical trial. [00:25:48] Um, I, I think that that's, unique to the situation and, and distress uniquely distressing to people as well. So, um, I think it can feel very scary to feel alone in your disease and very isolating. You know, it's already scary to be given a diagnosis, um, but then to know that you're one of only a few people and, and maybe you've never heard of anyone having that diagnosis before, that is a unique situation that is uniquely frightening. [00:26:16] Meghan Beier, PhD (3): Now we turn to Cyrena who shares her personal experience with navigating the healthcare system with a rare condition. [00:26:24] Cyrena Gawuga: I have a fair amount of experience with the healthcare system. Um, you know, my mother is a nurse. She's been a nurse in various different settings, you know, since like the late, you know, seventies, early eighties. So I kind of grew up in hospitals, um, and I, you know, Until I was diagnosed with lupus, I was in medical school. [00:26:49] Uh, so I, you know, had experience, um, from that perspective. So I was able to, um, you know, make fairly, um, Decisive, um, changes in direction, you know, I mentioned like moving from one setting to the other, and I think part of that was just having familiarity with how the medical system works. That doesn't meet. [00:27:18] It was easy. Um, but at the same time, you know, if I say it wasn't easy for me, that makes me realize how much harder it is for other people. I think, especially in other geographic areas. You know, I'm very fortunate to live. In, you know, new England in the, you know, like top end of the ACCELA corridor. You know, I always say like, if I throw a dart, I can hit whatever doctor I want. [00:27:47] Um, and a lot of people don't have that opportunity. Um, But, you know, I think the most difficult part of the process for me was the emergency room. Um, I think that there's a lot of staff there that aren't necessarily familiar with the presentation of, uh, you know, neuroimmune disorders and don't necessarily understand the. [00:28:14] You know, constellation of symptoms. Um, you know, obviously that, that, and actually, you know, like, I'm not just saying like medical assistance, but all the way up to physicians. I had, I, I had a couple kind of rocky run-ins with, um, emergency, um, medicine, uh, physicians. Um, Thought they knew more than they did let's just put it that way. [00:28:44] Who thought they knew? Who thought they knew more than I did, and thought they knew more about my body than I did? Um, So probably that was the most difficult part of navigating the, the process for me. You know, once I got onto like the medical wards, things were a lot easier. I had a neurologist, you know, that I was starting be seen by pt. [00:29:08] Um, but that kind of like, Another world of the emergency room is very difficult, um, when no one really knows what's going on and you're kind of being shuffled around for all these tests and no one's really telling you what tests they're taking you for. And I mean, I knew what tests they were taking me for just by like, Overhearing conversation. [00:29:33] But I think that probably for um, a lot of people that that could be very scary. You know, very scary experience cuz people are just like grabbing your gurney and wheeling you places and you know, they're running all these tests and not necessarily telling you what they are. Um, I have my cell phone with me and you know, now you can get a lot of your test. [00:29:56] Before the physician gets them. So I'm getting them and I'm scrolling through them and I'm like, oh, this doesn't look good. But, you know, um, I think that really the emergency room, like, I don't know what, you know, other people's experiences are, but the emergency room was just like, I, I don't know if I can swerve. [00:30:17] It was a real pain in the ass. [00:30:18] It was a pain in the ass. I had like this one. Um, ER nurse who was placing an IV line, and I was like, look, I have this one vein. This is the only vein you're gonna get. And he was sure he was gonna get another vein, and he did. And it was extremely painful. And I told him, and he just walked off. He, I guess he was. [00:30:40] So pissed off that I was trying to tell him what to do. Another nurse came in and um, you know, I was with my wife. This was, I think the third ti third time I had myelitis flare. And, um, this nurse came in and she's, you know, doing her nursing stuff and she checked my line and I told her, you know, I said like, , you don't take this out. [00:31:02] I'm going to pull it out. And my wife said, yes, she's serious. She will pull it out. And um, she, you know, so the nurse pulled it out. But you know, that, that, that didn't happen on the medical floor. And I, I don't know how, you know, we can improve the way that the emergency setting handles what we come in with. [00:31:27] But that was just like the worst for me. [00:31:30] Meghan Beier, PhD (3): Ireland reiterate the challenge of navigating the healthcare system by providing a personal story about the consequences of her team, not recognizing and treating symptoms quickly enough. [00:31:42] Ireland: Yeah, so, uh, for persistent symptoms, uh, really so the, the blind is my right eye. That did stick around definitely, uh, just because we weren't able to catch it in time. Uh, for a lot of my other flares we were able to catch in time, which, which we're lucky about. Uh, my left eye went blind at at one point as well, but since we were able to get knee in for treatment, um, pretty much straight away, I was able to recover that pretty much completely. [00:32:03] Uh, I went paralyzed at one point, but that got recovered pretty much completely. Um, and. It's just like a lot of stuff. If you're smart, if you have the right team, which is something that you have to have to fight for. Absolutely. Um, but if you're able to do that, then you are able to, uh, you're able to just secure yourself a future. [00:32:25] / [00:32:25] Meghan Beier, PhD (3): Now we turn back to Dr. Eagan and she shares how social media helps patients feel less isolated. These platforms offer a space for sharing experiences, finding resources, and providing vital support for these rare conditions. [00:32:40] Dr. Danielle Eagan: certainly social media allows people to connect with other far flung individuals who are dealing with similar problems. Um, and I actually point my patients to support groups on social media a lot of the time. I tell them, you know, search for your condition on Facebook, and I guarantee you you're going to find other people who have it. [00:33:00] And often those people are the best individuals to turn to for resources. They know exactly what you're going through and it reduces that feeling of, of feeling alone and isolated. [00:33:12] Meghan Beier, PhD (3): Dr. Eagan, just highlighted the power of social media in bridging gaps for those feeling alone, with their rare neuroimmune disorder. It's through these connections that individuals find strength and understanding. The coming story by Ireland is a testament to this. Experiencing severe neuropathic pain, she discovered a sense of belonging and comfort in knowing others shared her own experience. Listen to Ireland as she shares the impact of finding a community that truly understood. [00:33:41] Ireland: I do have some neuropathic pain, definitely. Um, but it has gotten a lot better over the years. I would definitely say, um, that getting on pain medication when I needed it was, uh, actually a lifesaver because I was so, sick and hurt and, and to be honest, suicidal, uh, because I was in so much pain. [00:34:02] I, I mean it's, it's heartbreaking to say, but I, I was 10 and I was, all I could think about was trying to, to get out of here because it was just so excruciating. Um, so getting to go to, um, the Transverse Myelitis Association now call SRNA or Siegel Rare Neuroimmune Associations, uh, camp for courageous kids and. [00:34:21] Um, talk with other kids. My mom getting to talk with our moms. Um, we did really realize. Uh, medicating the problem was something that we needed to do. We needed to get on the right kinda medication, um, including, uh, um, uh, antidepressants and stuff like that too, because it was just not, um, it was not going well. [00:34:42] Uh, but definitely being able to recognize that other people are going through these exact same experiences and, um, they are also, uh, seeking treatment and, and doing whatever they can to, to stay here. , um, is, is so important to, to recognize that other people are, are [00:34:58] Meghan Beier, PhD (3): She continues by sharing how connecting with others with a rare neuroimmune condition helped. She also shares what mental health treatments were and were not helpful. [00:35:09] Ireland: definitely, so for my me, my suicidal thoughts primarily were, were about the pain, um, but also just about the, the trauma of, of growing up. Um, broken, uh, grown up with people that didn't understand me, um, since I. you know, in our natural lives, people with rare neuroimmune disorders, they are not gonna run into somebody with a another rare disorder. [00:35:33] I'm not gonna walk down the street and see somebody that has transverse myelitis or NMO. It's, it's just kind of too rare sometimes. We do have to have these, these networks like Seigal Rare Neuroimmune Association in order to connect. Um, so the. The sense of isolation I had, um, growing up with this rare illness and, and growing up looking at all these other kids that were so perfect and so pretty while I was, you know, um, bloated from steroids and, and. [00:36:01] You know, sick out of my mind and, and um, you know, somewhat dissociative from my body cuz it's like you have this body that wants to kill you. So it's like, it's, it's, you start not recognizing who you are and, and, and what your body is to you and, and that sort of thing. Um, it was definitely a long journey for me to, to get through that. [00:36:23] Um, but I think when I finally started to pull myself together, um, was once I started taking medication, I was able. Get a little bit more clarity, I think when you're in that, when you're in that first five year period, you just gotta do whatever you can to just get through it. Um, but as I turned like 12, 13, and of course these are times when kids are, are, you know, crazy and depressed anyway, so it was just kind of added on [00:36:47] Um, but, but once I started getting a little older, I, I definitely, um, was able to channel my. Negativity. My channel, all my, my pain into, um, into art really was, was something that really broke through to me. Um, getting to write my story and getting to write this is what happened. And, and, and learning how to organize my thoughts on paper, uh, was something that really helped because otherwise they were just everywhere all the time and I couldn't stop, um, thinking about it. [00:37:16] Uh, I did go to a couple. Therapists, especially directly after. Uh, but I just, I did not connect. Right, because you, when you have it so early, I know that this is kind of a niche experience, but, um, the doctors had a, you know, they were expecting me to be immature in some ways and mature in other ways, but then it like the opposite. [00:37:39] So they, they would try and do like play therapy and stuff like that, but then I'm just. You know, I'm, I'm, I'm anxious and, and depressed, and, and it's something that's a little different. So a lot of the time they were trying to treat. Anxiety, and this is a, this is a good approach, uh, I guess to approach, um, like an anxiety or anxious person. [00:38:00] Um, but there's a certain anxiety that's never gonna go away when you have a rare disorder, especially if it's relapsing. There's always this, you know, foreboding feeling of, I, am I gonna get sick again? Am I, am I gonna lose my, this life that I've so carefully built again? Do I have to start from scratch again? [00:38:17] So, you know, I, I would say, The approach they took of trying to just distract me all the time and trying to, the main approach she said to do was just to imagine that I'm in a field and I'm looking up at the stars and that just didn't work because I am so. Obsessive about it. It, it's all I can think about. [00:38:40] So being able to, instead of just trying to ignore it, but trying to use it as a tool, as use it as something that could help somebody else, like, like writing my story down, like writing somebody else's story down. Um, that was something that helped me a little bit more than just, um, you know, just trying to, to, to ignore it because I, I can't look at a field of stars. [00:39:01] I. Think about that. All I can think about is, is hospitalization and, and how scary this is. that's my, that's my take. [00:39:08] Meghan Beier, PhD (3): Ireland just shared what she thought was and was not helpful in psychotherapy. We hear again from Dr. Eagan who shares her thoughts of what psychotherapeutic frameworks may be most effective for people with rare neuroimmune conditions. [00:39:23] Dr. Danielle Eagan: Um, it kind of depends on the person. I usually try to fit therapeutic modalities to individuals rather than two conditions, I guess I would say. Um, . I do think that CBT or cognitive behavioral therapy can be really useful, um, because there are so many negative thoughts that come up when you have a new diagnosis of a, of a rare condition. [00:39:49] Um, and, and those negative thoughts can become very consuming and can start to dictate everything about your life and your outlook. So, CBT can be useful for some people. to kind of intervene when those thoughts come up, when those catastrophizing ideas come up, you know, oh my gosh, my life is over. [00:40:07] Everything is terrible now. How am I gonna function? How am I gonna care for my family? You know, if you just immediately go to the off the deep end with those thoughts, it it's, it's gonna make it very hard to function. So, CBT is a good tool for intervening when those thoughts come up and, and redirecting your focus and kind of reframing those ideas. [00:40:27] other people might just need a more supportive environment. Maybe with a, a counselor who's really good at, at just more active listening and motivational interviewing, you know, kind of, um, what do you, what do you want? Where do you want things to go and how can we help you achieve that? Um, I wouldn't say that I, I really favor any one particular modality. [00:40:50] It, it kind of depends on what the person is looking for. Acceptance and Commitment Therapy can also be really useful. Just kind of learning the, the boundaries of, of what you can control and, and just kind of relaxing with the things that you can't control. [00:41:06] Meghan Beier, PhD (3): Dr. Eagan emphasized the importance of tailoring therapeutic approaches to the individual's needs, particularly in the context of a rare neuroimmune diagnosis. Cognitive Behavioral Therapy and Acceptance and Commitment Therapy were highlighted as effective tools for managing the overwhelming thoughts and emotions that often accompany these diagnoses. Transitioning from Dr. Eagan's insights. We now hear from Cyrena who shares her personal experience with therapy. Moving beyond CBT Cyrena explores the benefits of Acceptance and Commitment Therapy in her therapeutic journey. She emphasizes its relevance in facing the uncertain realities of her condition. Let's listen to Cyrena, how she articulates, how ACT helped her cope with medical challenges. [00:41:54] Cyrena Gawuga: My therapist and I have been sort of moving into, um, you know, she's kinda a mixed. [00:42:02] You know, modality person, I don't do CBT. I can talk myself out of anything. I know how CBT works and so I like it. You know, it, it's very hard when you know all the details of it, but we've been moving into ACT therapy, which is like acceptance and commitment therapy, which is, you know, been a really great experience. [00:42:25] in the sense that I think it's more geared to the type of issues that we deal with in that you, this is not going to go away, and it's really about learning to live with the situation that you have and kind of making the best of it. But not in that like pat way of like, oh, you know, everything happens for a reason, but in the way that, how can you thrive? [00:42:53] Not in spite of what you have, but along with what you have. And so, you know, I would say too, like if, if people are looking for therapists who you know, and they can't find someone who has experience with medical illness, that they can find someone who has experience with a acceptance and commitment therapy, that might be even more important. Um, because it, it really is great for major medical illnesses. [00:43:20] Meghan Beier, PhD (3): As we continue our discussion on rare neuroimmune disorders. Let's switch gears a bit and talk about resources. [00:43:27] In this part of the podcast, we're going to hear from Dr. Eagan and a few others from the neuroimmune community. They'll be sharing what's out there in terms of support and information, everything from online groups to therapies that can really make a difference. [00:43:41] We start with Dr. Eagan. [00:43:42] Dr. Danielle Eagan: honestly, social media is the best Um, I also pointed out NORD, um, the National Organization for Rare Diseases. Um, The MS Society, but that, that one is obviously really well known. [00:43:55] And clinicaltrials.gov, you know, if, if people are interested in participating in clinical trials, but that's not really like a help you resource. It's more like help everyone else figure out how to, how to treat this disorder, um, resource. But I, I do often offer it to patients. I just point them that way and say, if you're interested in participating in clinical trials, you could potentially help other people. [00:44:20] Um, I guess I would really emphasize that you're not as alone as you think you are. Um, and if you do wind up with a rare disease diagnosis, regardless if it's neuroimmune or, or not, um, this really applies to anybody. Uh, The, the first thing you should do really is look for other people with your diagnosis. [00:44:41] And the best way to do that is online these days. Um, and especially through social media, because I think social support, when you're dealing with a major stressor like this, is crucial. and the more people feel like they have a community around them that understands what they're going through and can provide resources and just share that emotional support that everybody needs when they're going through a major stressor. [00:45:07] I, I, I think that that is critical. And, and if people lack that, then they feel, um, isolated, alone, and alone, and they are vulnerable to symptoms of depression and anxiety, which makes it harder to function. [00:45:19] Meghan Beier, PhD (3): Dr. Eagan reiterated the importance of finding others with a similar diagnosis. Doug and Megan from episode one return here to share about how support groups have been helpful for them in navigating the disease. [00:45:34] Megan starts by discussing her history with psychotherapy. [00:45:37] She answers the question. Have you ever worked with a mental health provider? [00:45:42] Megan Willis Beik: Um, you know, I have in the past, not currently am and truthfully it is, you know, I do want to get back into therapy. I have also kind of found like with myself, like the best therapy for me is doing something about something or giving back in some way. So truthfully, volunteering with SRNA has been a huge therapy for me in a very selfish way. [00:46:10] Like, yes, I want to help others, but also they are helping me at the same time, and I think it's been a really good, you know, marriage of helping and being helped. [00:46:20] Meghan Beier, PhD (3): Megan now shares her experience with support groups. [00:46:24] Megan Willis Beik: Yeah, so I have, um, gone to a couple of Dougs that he has hosted and you are amazing, Doug. Oh my gosh. I always wanna just like, pick your brain, . I style. Um, and then the ones that I have hosted, I mean, it's, it's just so fascinating and to see the resilience. of people, and it gives me so much hope, you know, for my daughter, because I, I have an autoimmune disease. [00:46:55] It's not neuroimmune, you know, and it's very, it's not that big of a deal at all. But I remember being in. my early twenties and in college and trying to navigate the healthcare system myself and times not having insurance and not knowing where to start and putting my health on the sidelines and then being hospitalized for weeks because of it. [00:47:15] And so I worry so much about my daughter and when she's that age and having to go through that. And it's just my number one fear in life. And so seeing just like the resilience of people and knowing that there are these huge communities that you know, she has around her just makes me feel so good and not so scared all the time. [00:47:38] Meghan Beier, PhD: One of the things that you mentioned sort of struck me. In acceptance and commitment therapy, one of the things that I work on with people if we do that vein of therapy, is finding what your values are and any engaging in them more. So it sounds like even if you're not working with a therapist one-on-one, you've identified what helps you feel good, what helps you feel more in control, and you're doing that and so that helps your mental health, it sounds like. [00:48:02] Megan Willis Beik: Yes. It. [00:48:04] Meghan Beier, PhD: Okay. How about you, Doug? [00:48:05] Doug Kirby: So I'll, I'll start with what, what Megan was saying. Uh, you know, these being involved with other patients and other caregivers that have the same kinds of issues. You, you, you, you're, you've discovered you're not alone. Um, I love it when we have new people in the support groups and you watch their face brighten up because they, they, they get that, they understand that. [00:48:27] Um, I was in a, a thing last week and, and, uh, there were four of us and one of the patients there, but it was the first time that she had been. With any other patients that had rare disease and again, just brightened up and smiled. So I think the therapy is as much for the, the hoster, right? The person doing it and trying to bring people through that process as it is for everybody else. [00:48:48] So it's awesome. Um, while I was in the hospital, uh, initially I did meet with the hospital psychologist two or three times, and she's actually the one that helped me get over, um, taking some Cymbalta, you know, out with my mood a little. Um, uh, I, I, I, I, I suffered from while I was in the hospital from a, a thing, I think it's called tonic spasms, that that peak some, a certain percentage of people recovered during the recovery process. [00:49:15] It, it, they're spasms that are just really painful and, um, I do kidney stones and I would do kidney stones any day than have that other pain again. And, um, and she helped me get through some of those episodes, so I appreciate that. And then, um, Uh, my wife and I have actually watched several courses on, um, oh, I'm not gonna get the right term for CBT. And uh, and that's helped us a lot actually to, to sit down and talk about that afterwards and, and figure out, you know, what can we control versus what can't we control? And, and, you know, don't worry about the stuff you can't control and focus on what you can do. And, and that's been really helpful for us. [00:49:55] Meghan Beier, PhD (3): Now let's turn our attention to an often overlooked, but vital part of this topic, the experiences of caregivers and loved ones. While their struggles may not always be front and center. Understanding their challenges is key to grasping the full impact of rare neuroimmune disorders. Often family members may feel invisible and neglected by the medical system because they are not the one that has been diagnosed. But they are still living with and impacted by these challenging, rare diagnoses. I often hear that family members or support partners feel stressed and overwhelmed or have had their own medical challenges to manage, but they often get put on the back burner to help their loved one with the rare neuroimmune condition. When working with individuals, living with serious medical conditions is often important, even vital to bring family into the treatment. Hearing directly from those in the caregiving role offers valuable insights here, Megan. A mother of a daughter with a rare neuroimmune condition discusses how her caregiving role has sometimes led to her neglecting her own health needs. [00:51:01] Megan Willis Beik: So it is, but truthfully, I will say it is no one's fault but my own. I was just talking to my husband the other day and I was like, . Wow. You know, between Mia's diagnosis and all of her treatments and COVID and everything else, I haven't been to the doctor in four years, you know, and just n not doing those things. [00:51:22] And then, you know, with Mia's appointments, it, it is about Mia and it has to be about Mia, but I do feel like sometimes when. you know, especially at her infusions, for some reason, her neurologist is great, but when we go to do her infusions, I feel like I'll ask questions and they really just kind of glaze over me and 'em. [00:51:46] And it's very frustrating, . [00:51:48] Meghan Beier, PhD: Yeah. [00:51:48] Megan Willis Beik: like, just tell me. Just tell me, you know? So, but I, I need to get better about checking in on myself, making my health a priority. You know, I'm terrible about that [00:52:00] Meghan Beier, PhD (3): But health, isn't the only place for caregivers to prioritize their own needs. Megan goes on to discuss the importance of giving time and attention to her marriage. And also making time for enjoyment. [00:52:14] Megan Willis Beik: My husband and I, date nights are very important and we make sure to do, we have the the 2-2-2 rule. So every two weeks we go on a date. Every two months we do a weekend, and every two years we get away for a week, you know, just kinda focus on us and the relationship because you know, our relationship crumbles, everything else crumbles. [00:52:38] So we're really good about doing those things. And when. Go out for our date nights. Like, we don't, we don't talk about it. You know, we have, we talk about it so much all of the time that date nights are specifically reserved. Like we, we don't e we just don't talk about our kids, period. , we're just humans for a night. [00:52:58] Meghan Beier, PhD (3): Megan concludes with a crucial piece of advice for caregivers, the significance of advocacy and support. Let's listen to her experience in navigating these needs in her own family. [00:53:11] Megan Willis Beik: Um, you know, I just, I think it's really important to not only have a support system and a caregiver, but to have an advocate. And at times an advocate's gonna have to be yourself. I mean, my 12 year old has to advocate for herself. Um, you know, but. Especially with rare diseases where there's not a whole lot of, you know, case studies or scientific backup or this, that and the other. [00:53:39] Dealing with insurance companies is just a nightmare. And I finally, you know, had to, I had a, a girlfriend who had a son that had cancer. They had so many issues with insurance companies and they had hired a company to advocate for them, and she gave me the name of the company and, and we had hired them. [00:54:03] And, you know, we kept getting farther and farther and farther, but ultimately just had to change jobs and start the process over. But I think it's really important to have someone to advocate for you because I don't, I don't, couldn't do that for myself on my own. You. [00:54:19] Meghan Beier, PhD (3): Megan's story highlights an aspect that many families face, the challenge of navigating healthcare systems and insurance. Now we hear from Lydia, from SRNA. Who asks our community members, what prompted them to seek additional support. This is an important question because in psychotherapy, even if resources like support groups or providing information for community organizations like SRNA are provided and discussed. They aren't always implemented by the individual in treatment. Here. We hear again from Megan and Doug. [00:54:53] Lydia Dubose: A a a question that came to my mind was, um, you know, as a part of this community, what is it that that made you want to reach out or want to step out and find support? [00:55:06] Um, but I don't know if. Ever a moment or if it's just a general, you know, uh, need for support. [00:55:14] Doug Kirby: So I'll, I'll jump in. So at one point a couple years ago there, I just felt the need to get involved. To, you know, and to, to not sit around and mope and, and to, to, to try and, um, uh, make my own life better, of course, but also to make other, li other people's lives better. And, and you know what, we're, none of us are gonna change what we're going through through support groups and other things, but there is just so much, um, hope that comes from being in it together. [00:55:50] Right. And, and have the camaraderie that that comes out of those meetings and meetings, uh, you know, in person meetings, support group meetings, you know, even video conferences that, that, um, uh, you know, we, we, we lighten each other's burden a little bit when we do that. So I think that's what I thought I needed to do. [00:56:07] Megan Willis Beik: Um, for me, so I really wanted to get involved with SRNA for my daughter. So that way when she was old enough or when she needed a resource or she was ready to bare all and tell her story on the most intimate level, she already ha kind of had a group of people that knew her in a way, you know, and would be responsive and accepting. [00:56:40] And so I just. to kind of establish some sort of community for her for when she grows up. Um, I will say with SRNA, I have learned so much and I have been able to relay and teach her so much and she has gotten so much more comfortable with her diagnosis, with her disease, with her day-to-day life, and then, , her kind of learning about some of the other diseases. [00:57:06] It's been very, you know, kind of interesting and enlightening because she has MOG, but she has optic neuritis, which is its own disease, and some of the symptoms of MOG is ADEM, which is its own disease as well, and just kind of how close they all are, yet how different they It's been really interesting. [00:57:27] Conclusion --- [00:57:27] Meghan Beier, PhD: In today's episode, we've examined the world of rare neuroimmune disorders. We heard stories from individuals like Ireland and Cyrena who offered insight into the daily realities and cognitive challenges they face. Dr. Eagan provided invaluable professional insights into the cognitive and psychological impacts of these disorders. We also delved into the critical role of healthcare advocacy as shared by Megan highlighting the importance of support and resource navigation. Looking ahead. [00:57:59] Our next episode, will build upon these foundations. We'll delve into the resources available to mental health professionals that can specifically support individuals with rare neuroimmune disorders. [00:58:10] We aim to provide mental health professionals, individuals living with rare neuroimmune disorders and loved ones, additional tools and strategies to lighten the daily load of living with these conditions. Join us for the final episode in this series, , which will be released in two weeks. [00:58:28] Again, as a reminder, if you would like continuing education credits for listening to this episode, click the link in the show notes, or go to FindEmpathy.com/learn. While our education is free for all proceeds from continuing education go to support the development of new content. Additionally, a portion of the proceeds from this series will be donated to SRNA to support individuals and families like those you've heard in this series. [00:58:58] Meghan Beier, PhD (3): Our goal is to help people living with challenging medical conditions find the mental health providers who understand their diagnosis. [00:59:05] Our education, and this podcast, is focused on increasing the number of mental health providers who can help. [00:59:13] If you are a psychologist or a mental health provider that specializes in health populations, please consider signing up on the free Find Empathy directory. Go to findempathy.com and select "Get Listed." [00:59:26] We would love to connect with you on social media. Look for us on Facebook, LinkedIn, Twitter, and Instagram. [00:59:32] Finally, please know that the opinions expressed by the experts today are their own. We are not financially supported by any of the businesses or resources described in today's podcast. [00:59:42] Also remember that the content provided today is for educational purposes only. Please seek the guidance of your doctor or mental health provider for any questions you might have regarding your own health or medical condition. [00:59:56] Thank you so much for listening and we look forward to you joining us in the next episode.