Navigating Mental Health and Community Support in Rare Neuroimmune Disorders

[00:00:00] Opening --- [00:00:00] Doug Kirby: /Well, I think first of all, because they are rare, you feel isolated. Nobody knows exactly what I'm going through. I wish sometimes I could take my finger and touch somebody on the shoulder and they would feel the way that I feel most of them would fall down because that would be such a shock to the system./ [00:00:14] Introduction --- [00:00:14] Meghan Beier, PhD: / [00:00:15] Welcome. This is the final episode of the three part series on rare neuroimmune disorders. My name is Meghan Beier. I'm a psychologist that specializes in chronic illness and disability. This series is designed for mental health professionals seeking continuing education, but can also be valuable to community members looking to learn more. If you are a mental health professional, get your continuing education credits by clicking in the link in the show notes. Please note. That a portion of the proceeds for CEs goes to SRNA to support individuals and families like those you've met in this series. In this final episode, we are going to talk about resources and supports. We hear from community members about what has helped them most in managing emotional challenges. [00:01:08] Introducing SRNA --- [00:01:08] Meghan Beier, PhD: Representing the thSiegel Rare Neuroimmune Association. We have Rebecca Whitney, the associate director of community programs and resources and Lydia Dubose, the community engagement manager. They are both going to share a bit more about the organization as well as resources available to individuals and families. Living with rare neuroimmune disorders. Including resources that are available to medical and mental health professionals. Rebecca starts by describing SRNA. Rebecca, what is SRNA. [00:01:42] Rebecca Whitney: A national international organization and support, um, families and individuals with the diagnoses all over. [00:01:48] Meghan Beier, PhD: In one of the previous episodes, Rebecca introduced herself. And what brought her to SRNA. If you miss that episode, Rebecca shares here, a personal connection that brought her to the organization. [00:02:01] Rebecca Whitney: So I have a now teenage son who was diagnosed with longitudinally extensive transverse myelitis when he was four months old. Um, I found the organization early on in, in his journey after the diagnosis. Um, and five years later we ended up attending a family camp. [00:02:24] I started as a volunteer and. Then moved on to become an employee and 15 years later, , here we are. [00:02:32] Meghan Beier, PhD: Now we hear from Lydia, she describes her background more about her role at SRNA. And what brought her to the organization. [00:02:41] Lydia Dubose: I, um, have a background in nonprofit organizations. I've worked in several different spaces, but I've always been focused on, um, helping to support communities, helping to bring people together, [00:02:55] and, I've. Kind of always thought of myself as a connector, and that's what I think of myself as in this role is, um, a lot of what I do with SRNA day to day is, um, connecting folks to each other. I'm focused a lot on our volunteers. [00:03:11] Uh, And their programs and, um, helping make sure that they are supported as they're supporting our community, um, through support groups, through our peer connect programs. Um, I also do a lot of work, um, bringing people in to be involved with, um, our events. Uh, we have different community led events, um, and different, um, awareness events that we do to, to bring the community together. [00:03:38] Um, and, and. People feel informed about these disorders and help people to, uh, feel understood by connecting, uh, to one another. [00:03:48] I've always been really impressed the SRNA. So community focused. Um, uh, not only are we providing information, but we're really trying to be there for people. [00:03:58] one of the things that sets SRNA apart is that that kind of foundation of connection and. . So often when people reach out, uh, to an organization or uh, a helpline, they don't necessarily think there's another person on the end of it, or there may not be a very responsive person on the other end of it. [00:04:16] And that's something that makes SRNA different is we're really there. Um, and we're really trying to connect you with whatever it is that, that you need. Whenever you have a rare, rare immune disorder. [00:04:29] Meghan Beier, PhD: Making people feel less isolated and alone. [00:04:31] now that you've been introduced to Rebecca and Lydia and heard a bit about SRN, a let's hear from a community member. As you learned from Rebecca and Lydia, one of the goals of Sr and a is to reduce isolation. Doug Kirby diagnosed with neuromyelitis optica, spectrum disorder shares about what it is like to live with a rare diagnosis and how the connection brought up by Lydia has been important to him. [00:05:01] Doug Kirby: Well, I think first of all, because they are rare, you feel isolated, right? Nobody knows exactly what I'm going through. I wish sometimes I could take my finger and touch somebody on the shoulder and they would feel the way that I feel most of them would fall down because that would be such a shock to the system. So number one is, is isolation. Is is initially at least. You know, you feel like nobody knows. Nobody gets it. And again, that's where the support groups in these, uh, organizations are so helpful is that, that you can get out of that. And it's amazing how you, you don't know people, but you, you're with them for less than a day and they're already your best friends. You know, a person has to have a support team. You know, of, of, of more than one person because the caregiver's gonna need some time away occasionally to scream in the pillow, right? [00:05:48] And, and so, you know, having, um, multiple people, you know, working to support an individual and let them know they're not alone, I think is really important. [00:05:58] Meghan Beier, PhD: But it's not just individuals living with a rare condition that can feel alone. Family members can also feel isolated. Megan highlights the need to ensure siblings that are living without a rare medical diagnosis are not forgotten. [00:06:15] Megan Willis Beik: And then with the family dynamic, you know, we have a, a younger daughter who's 10 who does not have an health issue, and her life revolves around Mia's doctor's appointments and treatments and infusions and MRIs and what she can physically handle. And so it's really important for. [00:06:37] To make sure that she feels special too, because so much of her, her life has to revolve around Mia and so she often feels forgot about or left out, and so it's that balancing act. [00:06:49] Meghan Beier, PhD: Another community member Ireland also shares her experience of feeling isolated and alone. She expands the discussion and shares her thoughts on how mental health providers could address the feeling. Even if they are not experts in rare neuroimmune disorders. Please note, there is some sound interference in the background when Ireland is speaking. [00:07:12] Ireland: Um, there's not really a huge need to get into all the jargon, uh, but there is a lot of individual issues that are gonna be universal among all autoimmune disorders in all rare cases. Um, there's always gonna be this feeling of isolation. I, I think this is, I mean, not that that people with cancer have it better or anything like that, but it's, it is like when you have cancer, everybody kind of understands what you're saying, [00:07:39] But like, when you have something that that's, you know, 27 syllables, you just, it's not something that's, um, it's not something that's understood. So there's gonna be a lot of, of universal issues between cases that, that. Um, mental health professionals could cover, uh, isolation, depression, anxiety, but not anxiety as in, you know, anxiety that we, uh, just try and back away. [00:08:02] But anxiety that we, we look at, we confront, we, we notice, and we, um, I think also just saying that this is a legitimate feeling, uh, like just, just having somebody to, to listen to you, to, to just. Yeah, I understand exactly why you feel that way. Like, like it's just the understanding of it. The, the finding empathy , that is really the key here, um, is just to, uh, key in on, on, I, I would never expect somebody to. [00:08:31] Fully understand these processes because they've never had to know what these processes are and they're never gonna have as well, uh, as good of an understanding as I do of, of my issues. Uh, so I would just definitely try and have people focus in on finding those, um, core issues that, that we all have. [00:08:48] Meghan Beier, PhD: These last three community members highlighted the theme shared earlier by Lydia, that individuals with rare neuroimmune disorders, and their family members, can feel isolated misunderstood. Lydia continues here by sharing additional challenges that she's observed while working with SRNA community members and care partners. She acknowledges the physical symptoms, but continues to highlight the need to feel connected and part of a community. [00:09:15] Lydia Dubose: Yeah. A lot of, uh, physical challenges that people experience, obviously with a rare neuroimmune diagnosis, um, getting used to, um, you know, different aspects of a disability or a chronic illness. Um, There's the emotional side of it, of processing all of that, and uh, coming to terms with it. Um, and then like we've talked about that connection piece, it really seems to be one of the biggest things that people are looking for is, um, nobody's heard of transverse myelitis. [00:09:52] Nobody's heard of. MOG antibody disease. Um, you know, how, how can I talk to somebody who understands what it even is in the first place? And then, you know, what it's like to live with a rare disease. Um, it's something that, uh, really stood out. When I was talking to some of our volunteer leaders the other day, um, a couple of them were saying they love to be a part of, uh, SRNA because it's like they've found their people. [00:10:21] And I think that's what a lot of people are coming to SRNA. They're looking to us, um, to help find their people. [00:10:29] Meghan Beier, PhD: Rebecca continues with her thoughts. [00:10:33] Rebecca Whitney: sometimes just being able to connect with someone who can feel that and understand that your life is incredibly different than say your siblings or your coworker. [00:10:46] Um, and it may not be entirely visible, um, can make all the difference in the world in not feeling so isolated. And then I think that really is one of the big things, is just feeling that isolation, feeling that isolation from the medical professionals, um, who are treating, um, who are like, oh, you had transverse myelitis. Your spinal cord is no longer inflamed, but. , you can manage your neuropathic pain, you can manage the foot drop, you can manage the neurogenic bowel and bladder. And it is not that easy to say that, um, because those are things that change the course of someone's life. So, and from the outside, whether it's, you know, family and friends who may be rallied around to support at that initial diagnosis, they're back to life as usual. [00:11:37] And yours, you have to change. not in every circumstance, but in many, how you go about every aspect of daily living. Um, and that's, I think, probably the overbearing challenge is that life, as you know, it has been flipped upside down. And you have to come to terms with what is it that you need to do next? [00:11:58] How do you continue to move forward? Um, how do you find joy? How do you, how do you just maintain and, um, continue in recovery? What's next? What does it mean? And I think those are the biggest challenges. And then along with that comes that mental health aspect of it all. And one thing I think is really important for people to recognize is whenever you're handed a diagnosis like this is, there's a cycle of grief [00:12:26] Meghan Beier, PhD: yeah. You're pinpointing. I exactly what I, I I also think that there's, you know, a cycle of grief, but it's not one type of, you know, it's not one time where you go through this grief cycle and then all of a sudden, , it's better. every time you come up against something new that you hoped you could get through without these symptoms impacting, and then they do or they change the way you wanted to do it, there's grief there, there's frustration, and, and that's something that you almost have to kind of learn to manage. [00:12:55] Am am I hearing you correctly and saying that [00:12:58] Rebecca Whitney: yes, absolutely. And it's really, it's really hard because you think you can continue to move forward and then, An illness comes along and it takes you down harder than it would have before your diagnosis. Or there's complications from a surgery that you otherwise wouldn't have had to have had you not had that diagnosis. [00:13:18] And, and like I said, and the rest of your support systems that you knew before have moved on, um, or you have, you know, A day where the neuropathic pain is just so intense, but how do you explain to your employer that you can't sit behind that desk for eight hours without them asking more questions that quite frankly may not be any of their business or, you know, without becoming, you know, too emotional about it. [00:13:48] Because, yeah, it's just, it can be a very isolating thing and all of the pieces about it are not necessarily very visible to everyone. [00:13:58] Meghan Beier, PhD: Absolutely. Yeah. I mean you described that so well and something similar themes that I hear from many of the people that I work with as well. Um, speaking to mental health as you brought it up, Rebecca, um, can you share a little bit more sort of what do we know about mental health in people living with these rare neuroimmune conditions? [00:14:18] Is it more, are anxiety disorders, depression, those kinds of things? Is it more common? Um, and what do you. A mental health provider should know about these conditions. What should they learn about, um, in order to really fully support somebody who might be coming into their office? [00:14:37] Rebecca Whitney: Yeah. So, um, I do have to say I am not a medical professional, [00:14:42] Meghan Beier, PhD: Sure, [00:14:43] Rebecca Whitney: I am not a researcher. Um, so, um, all of what I share comes from my understanding of, you know, what the, um, what those who do research these, um, These aspects of a rare neuroimmune diagnosis have, have found, and then what our community is telling us. [00:15:03] And then of course, what, what I personally live. Um, so I do believe that there is indeed evidence that the, um, the rate of depression, anxiety, those mental health disorders, um, do increase with a rare neuroimmune disorder diagnosis and. Could indeed be a physiological component of it, right? When there's inflammation in the central nervous system that's washing over the, the brain and spinal cord, that could have an impact on it. [00:15:36] Um, Dr. Lana Harder. Of UT Southwestern, um, has done some research in this area, and then I know that we also, you know, borrow some information from the MS community. Right. Um, because of the similarities there. So, um, and there's been other research out of, I believe Johns Hopkins, um, with one of the, um, With one of the professionals there as far as the rates of depression and suicide this community being higher than, um, than even in those with a terminal illness. [00:16:14] And I learned that when my son was very small and to, it was jarring to me to learn that, that someone with transverse myelitis, that the rate of, of suicide within this community. [00:16:28] was higher than that of someone with a terminal cancer. It just, it just threw me for a loop and it's something I have held onto ever since. So it just made me more vigilant of mental health, um, for my child, for, for community members too, so, yeah. [00:16:47] Meghan Beier, PhD: my follow up, would be, uh, you know, if you were to seek out a mental health provider, either for yourself or for your son, what would you hope that they would? or what do you want them to learn? [00:17:01] in order to best serve you, your family or your son. [00:17:05] Rebecca Whitney: I would, I would want them to understand some of. Components of the disease process, what it is impacting and realizing that it, it can be so, so vast, right? Um, you could have, you could have pain but not have any kind of paralysis or you could have paralysis, but. not pain. And then just understanding that even if you don't have that paralysis, you could have something like neurogenic bladder that is a significant part in quality of life that's going to play mental health, but just understanding that there's always going to be more than what meets the eye. [00:17:55] Um, and that. It is rare, and there's something to be said for having someone who takes the time to understand what that specific diagnosis that someone has been given, um, really means. Um, to know that someone has looked it up to say, I've checked this out, and not just lump them into a category. Spinal cord injury or um, chronic disease or to pass off, you know, neuropathic pain as well. [00:18:33] It's pain. Everybody has pain, right? You know, this can be life altering. So just someone to really understand that, like I said, there's more than meets the eye and is showing that they are taking their client's best interest to heart by actually. Just digging 15 minutes deeper into, you know, something like SRNA's website, you know, as far as all the different possibilities of symptoms and, um, and concerns that people are dealing with. [00:19:06] Meghan Beier, PhD: Continuing this discussion, Megan, one of the community members that is a parent to a daughter with MOG antibody disease shares what she would want a therapist to know. [00:19:19] Megan Willis Beik: I, I would want them to know what MOG is. I mean, our, our pediatrician doesn't even know what it is. Anytime we have to go into. In urgent care or her pediatrician and you tell them that she has MOG antibodies disease, they look at you and they go, what? You know? So that, that's always fun, . Um, and two, I think especially as a child, you know, she feels very different than her peers and she has to be more responsible than her peers, and she has to take that daily check every. [00:19:55] And listen to her body and figure out what is going on, because if we don't catch an attack quick enough, then she can have permanent damage. So it's all about finding it quickly and treating it quickly, and she's the only one that can do that. And she is tasked at 12 years old with this huge responsibility that none of her other friends have to deal with. [00:20:20] Meghan Beier, PhD: Cyrena, who we met in the previous episodes is a community member living with two auto-immune disorders. She shares her experience of working with a psychologist that took the time to learn more about her medical diagnoses. [00:20:34] Cyrena Gawuga: I have a mood disorder independent. Um, so I had already had an established relationship with a psychiatrist, um, and a therapist when this happened. Um, and so. You know, like you're saying, a lot of people don't have a much experience dealing with medical illness. I was actually fortunate at the time that I had a psychiatrist who was previously an emergency medicine physician. [00:21:07] Uh, so she, she, she did have a lot of familiarity with medical illnesses and so that was really helpful in the transition, not only in terms of managing. The, you know, response of the mood disorder to, um, this new medical situation I was in, but also in the sense that I could talk about these very specific medical terms and have my psychiatrist know what I'm talking about. [00:21:40] My therapist on the other hand, um, is an excellent therapist and I still see her. Um, As you have noted a number of times, did not have specific training in dealing with major medical illness or chronic illness, and definitely not neuroimmune illness. However, um, through her practice has had a number of patients who have major medical illnesses. [00:22:09] I know she sees a few people who have. You know, I'm her lupus patient, , so on so forth. So, um, she was open to me talking about my illness has, um, you know, independently. Um, and also with my assistance learned more. About transverse myelitis and, um, the sort of mental health sequela of the experience. Um, and we have really talked a lot about, you know, like Ireland, what you, you mentioned the, that sort of. [00:22:46] Like that foreboding sense that's constantly traveling with you. Like when is the other shoe gonna drop? And, you know, my shoe dropped a couple times after the first, so I, you know, like it's really there and I'm constantly like monitoring myself all the time. You know, I still have some very mild weakness in my, um, left hand. [00:23:07] I have a foot. I have weakness in the left foot, um, and I have clonus. So like if I bounce my leg, it'll just go, go, go, go. So I still have residual symptoms that are always making me think, how much worse is this getting, you know, like I do have that part of me that's monitoring all the time. I still get back pain flares. [00:23:28] I'm like, Is it happening again? I'm not sure when I actually, when I went to the SRNA conference after the flight, you know, I don't know if it was the stress, I don't know if I was exposed to somebody's cold, whatever it was my immune system like went into overdrive. I'm feeling all this inflammation and got the back pain and I'm like, I can't have this happen when I'm on the other side of the country. [00:23:54] Um, So we talk a lot about that and we really talk to about the, um, The fracture that happens in your sense of self, in the idea of I had been building a life and now that is gone. How do I build something else and. You know, I'm still working on the feeling that, you know, like for somebody else, like what I'm doing is really amazing, and to me, in some ways feels like the consolation prize because you know, I had this thing happen and now I had to rearrange my whole life. [00:24:38] And I have to be thinking, I honestly think like I have to have a job so that if something happens to me, I can be out for four weeks. It's not gonna be a big deal. You know, I, when I'm looking for jobs, one of the first things I look for is the, you know, health plan. Like, what's available to me, what are they gonna cover? [00:25:01] I'm really fortunate, my wife is, Covers my healthcare Right now. She's a clinical social worker at a hospital, so she gets really great healthcare and so we pay extra. You know, she has, coworkers are always like, oh, you should switch to the other plan. It's cheaper. We pay extra because I have a PPO, I can see my team in Boston without having to ask anyone permission. [00:25:27] Um, And I can see the therapist that I want to see. You know, it's really important. I've been seeing her for, I think, you know, a million years now. Um, but although she didn't have experience in the. Major medical illness, like through specific training. Think in working with her, she, we've learned a lot from each other. [00:25:54] She's learned a lot about the, what the experience is like, especially the combination of having a mental illness and a physical illness. Um, and it's diff it's really challenging cuz for me, I've got two shoes. I'm watching, I'm watching like this mood disorder shoe, is this gonna drop? And then I have like this neuroimmune thing, is this shoe gonna drop? [00:26:18] And I've been through a lot of treatment and you know, some of it I've maxed out on like I can't do again. And so I don't know what's gonna happen. You know, I have another myelitis incident, like what's my treatment plan? I don't know, , don't know. [00:26:35] Meghan Beier, PhD: Hmm. Yeah. [00:26:36] you talked about, um, the things that your therapist learned,So if somebody's coming new to this and they're saying like, I have a patient who's coming in or that I'm currently working with that was diagnosed with something like a rare neuroimmune autoimmune disorder, what would you want them to learn about? What do you want them to know or to dig deeper into? [00:26:55] Cyrena Gawuga: I wouldn't expect them to go and learn all of the, you know, medical like terminology and like the, the, you know, phenomenology or whatever, but just to have. You know, maybe visit the SRNA website and look at some of the material they have, like for the general public so that if I mention that I still have a foot drop and it's can be disconcerting for me cuz I use a cane. [00:27:29] They'll know should, you know, they'll know what I'm talking about and then we can go from there. Um, in terms of like the actual illness, That's where I think I would want them to go. I don't really expect them to know a lot about it. I really want them to listen to my experience of it. Um, but a general knowledge is good, and I think the SRNA flyers are really great for that. [00:27:59] Um, but the rest of it, I think it, if, if at all possible, it's good to, it's more important to establish a relationship with a therapist. That you can , I suppose, teach, um, uh, rather like right now, I mean, if you were to look for someone who had a, you know, specialty in, you know, major medical illness, chronic illness, you know, you, it's uh, you know, it's like it's really hard. [00:28:28] So I think it's more important to have a therapist who's open to learning, but I think definitely programs like this will help. A lot more. [00:28:40] Meghan Beier, PhD: Doug shares what he would want from a mental health professional. [00:28:44] Doug Kirby: So if you take empathy and the definition of empathy to the nth degree, your therapist just isn't gonna empathize. So don't do that. know, we've all gone through stuff, right? [00:28:58] And we, it's different stuff. We've all been through difficult times and we've had challenges and things that we've had to do, and that's one of the things I've learned through this experience is that I've gotta be nice to people because I don't know what they're going through. And, um, you know, to treat them well is really important. [00:29:15] So as a therapist, you might not know exactly how I feel, but you know what it's like to. Alone, you know what it's like to feel that nobody cares or that, that, um, you know, your, your life is over as you know, it, , you the things that you used to do, you can't do anymore. You know, I think that, that we all can have that degree of empathy with each other. [00:29:38] And so while we may not, you know, know exactly how each is feeling, we know what it's like to go through a tough time. And I think, um, you know, a therapist that can, that can, uh, feel that way would be awesome. [00:29:50] Meghan Beier, PhD: Lydia share some final thoughts about the importance of mental health professionals. Along with family, friends, and medical team members, doing their own homework to reduce the educational burden on people with rare conditions. [00:30:04] Lydia Dubose: Yeah, I'll just speak anecdotally, um, from what I've heard of our community members as I've gotten to know them or what they bring up in support groups or what we hear from our volunteers who are working one-on-one with our community, I, um, I hear so much of. , you know, there, there are the physical challenges. [00:30:26] Um, there might be pain, there might be bladder issues. Um, and there's certain medical ways to address those things, but, uh, many people want to know how to cope with those different pieces. And there's so much, um, mentally that that comes along with, uh, managing your, your symptoms and your diagnosis. people want to be able to talk about their experience and they want to be believed. [00:30:53] Um, but they also don't always wanna be walking around being a medical educator. Uh, so, um, having, having people that are willing to. Like Rebecca said, take 15 minutes and just do some learning. Um, sometimes that is just people in their lives and their families and helping, helping them to understand what their diagnosis is. [00:31:18] Um, so often people. I think are disheartened by, um, by family and friends who aren't willing to take that next step to help learn about their diagnosis. Um, even medical providers who aren't really willing to dive in and they're like, oh, you have. You have MOG. Oh, I don't really know what that is, but you know, here's your treatment, whatever, you know. [00:31:41] Um, but uh, having, having somebody really see them and understand and um, be willing to kind of dig in, uh, is, is really important when it comes to mental health. [00:31:53] Meghan Beier, PhD: what I'm hearing is that it's important that people feel heard, validated, that they don't have to be the one who's always educating about it, that somebody's willing to sort of take a step forward and meet them, you know, do a little bit of their own education and all of that is taking a little bit of the burden. [00:32:11] It doesn't take the disease away, it doesn't take the symptoms away, but it Turns the volume down on the burden that, that they're carrying around. [00:32:19] Lydia Dubose: Yeah. Yeah. And I know a topic that comes up a lot for people. Kind of in addition to that is, you know, you're going to the doctor, you're having all these appointments, you. Have this medical trauma that you've been through oftentimes. Um, and, uh, I've heard from folks just recently talking about, you know, the smell of, uh, uh, the hand soap that they use in the hospital. [00:32:45] Having to like, go back and smell that again, you know, triggers something in you, um, uh, things that you don't, nor. Those are things that maybe you wouldn't think about normally, um, that people just need to process, um, and, and figure out how to cope with going back into that setting because our community might have to go for many appointments or, or different procedures or, or things that, um, most people don't have to deal with and most people don't understand. [00:33:18] Meghan Beier, PhD: In the next segment we'll be hearing from Rebecca, a dedicated care partner. [00:33:25] But first I want to share something really special with everyone listening. For those of you who are living with rare neuroimmune disorders and their care partners or families, [00:33:35] There's an incredible opportunity coming up. [00:33:38] The Siegel Rare Neuroimmune Association is joining forces with can do multiple sclerosis to bring you a unique and free four part coaching series in August, 2024. This coaching series will focus on relationships and emotional wellbeing. Can do multiple sclerosis is known for their health and wellness education programs that empower families living with multiple sclerosis. They are extending their expertise to include those affected by rare neuroimmune disorders. [00:34:08] This series is not only for those who are directly impacted by rare neuroimmune disorders, but it's also an amazing and valuable resource for mental health and medical professionals to give to their patients. [00:34:21] It's a chance for individuals who are living with these conditions to gain insights, develop new and healthy habits, and connect with others who truly understand your journey . What I think sets Can Do MS programs apart is their inclusive approach. They embrace, not only the person living with the disorder, but they also include and really focus on care partners, family members, and loved ones. As we know the impact of these disorders extends well beyond the individual who's diagnosed. It touches everyone close to them. [00:34:54] So I really encourage those listening to explore this opportunity. You can visit the Can Do Multiple Sclerosis website to learn more about the upcoming program. [00:35:04] Now let's turn our attention back to Rebecca who will share her experiences. And the profound challenges that are often faced by care partners in this community. [00:35:15] Rebecca Whitney: for, for care partners, caregivers, parents, um, that there's a trauma for them as well, that they've been through. , um, and how that impacts their daily lives and how they continue to care and support the individual whose been diagnosed. [00:35:37] Meghan Beier, PhD: I've heard from many care providers, support partners, that they often feel invisible. when you go to the doctor's office, they're asking everything about the person with a diagnosis, which is great, but. , there's never really this question of, you know, how are, how are you doing as a support partner? [00:35:54] And that can be really hard and also very isolating. [00:36:00] Rebecca Whitney: Yes. Yes, absolutely. And I can only speak to it from the perspective of a parent. Um, but it, when my son was diagnosed, it, it, every member of our family, it has changed our lives forever. My husband, my other two children, um, Where we are now, we would, we would not be had my son not been diagnosed. Um, so it's, yeah, it impacts so much, um, relationships and careers, um, and yeah. [00:36:39] And even those of, of siblings, you know, those who, who are kind of adjacent to [00:36:44] Meghan Beier, PhD: Megan highlights this point with a poignant story. She had to fight to get the medication her daughter needed, which involved multiple battles with the insurance company and even having to switch jobs. [00:36:57] Megan Willis Beik: Um, so with MOG, especially in children, their first attack. It, they tell you that this could be monophasic that kids under, I believe it's 14 when they have their an attack, a lot of the time it's monophasic and it never happens again. So they treat it with high, do high dose steroids. So when she had her second attack, right when she got off the steroid taper, um, we knew that it wasn't monophasic and we had to do some sort of preventative. [00:37:26] And so we liked the idea of IVIG. because we didn't wanna put our 10 year old at the time on a immunosuppressant, you know, especially when she's at school. And you know, let's face it, kids are ger and dirty. So , we didn't wanna suppress her immune system, but we had to battle like the insurance companies for years to get it approved. [00:37:51] And so with their second attack, they gave her IVIG in the hospital, and that really did kind of keep another attack from coming until we could figure out what we had to do with the insurance company. Unfortunately, it didn't keep it off the entire time. She had one more attack, but then the insurance company was finally like, okay, this isn't a one time thing, a two time thing, and they finally approved it. [00:38:18] Did you have any worries about the medications that she was being put on or suggested? [00:38:24] Um, so the insurance company had come back and told us, since the steroids are fixing the symptoms, she just needs to be on steroids. And every time that she's on steroids, she loses all of her hair. She has, you know, her, her face swells up, her joints hurt. Her mood is just so up and down and unpredictable, and she just feels terrible. [00:38:47] And so we knew that. , we weren't gonna put her through that. Like that can't be the course of treatment. So that was super concerning. So we, I mean, we filed 14 different appeals with the insurance company and when that didn't work, I switched jobs to get different insurance to, and started the process all over again. [00:39:06] So we really. Fought and advocated for IVIG because A, we knew it worked. B, it didn't give her such harsh side effects like the steroids did, and we were really adamant about not wanting her to be on immunosuppressants this young. [00:39:23] Meghan Beier, PhD: Doug and Megan discuss the significant adjustments their families have had to make altering their lives and expectations. They explore how family members have been managing their own emotional challenges while simultaneously offering ongoing support. [00:39:37] Doug Kirby: Well, I was, uh, again, we were empty nesters at the time, so clearly for, um, um, uh, for Holly, my wife and I, it was a big deal and, um, we had to make a lot of changes and, and, uh, we actually are in a rambler. We had just moved in. Like a year and a half before from a two-story. And, and uh, so that was nice. But we still needed some ramps to get in and out. [00:39:58] Cause I couldn't walk when I first came home from the hospital. I didn't learn to walk for like two, three months later after I got out. And um, so that's changed a lot. And to go back to your question that you asked, uh, Megan A. Little bit earlier about caregivers, you know, I noticed my wife struggle. To take care of herself to, to go and do the things that she needs to do. [00:40:19] And we're working on that. You know, whether it's a, a spa a or a, um, or going to the doctor. She's got some feet problems, you know, and, and, uh, you know, her problems are just as important as mine. But that's a hard thing to hear and to do as a caregiver because we're so unique, you know, and, and, um, that doesn't take much to put me in the hospital. [00:40:42] And so she, she's really good about taking good care of me. With my kids. You know, the first question they want to know is, is a genetic. Are we gonna get it too? And, and, uh, uh, we don't think so. And so we tell them that. And, and, uh, the grandkids just get used to having rides in grandpa's wheelchair and, and, uh, you know, we just make the best of that. [00:41:04] Meghan Beier, PhD: one thing that I've heard from others is that being Blatantly honest with your partners, but your partners being honest with you and vice versa is one way to sort of get through the challenge when one person is feeling overwhelmed or resentful [00:41:19] what do you all think of that? [00:41:20] Doug Kirby: Yeah, I agree. I agree with that. Uh, that's not easy though. Again, if I'm trying to get my wife to take care of herself, then I may minimize how I'm feeling or what I'm going through, and that's probably not right. Um, so that's hard to do. But I agree with you the more. I'm open that you can be between the caregiver and the patient, or you know, if you're married with your partner, who is my caregiver, my wife, then, then the better off things will be. [00:41:46] Um, you know, you, you just, you just learn so much going through these kinds of experiences that I don't know how else you learn them, that you, uh, um, you actually, in a strange way become grateful for what you're going through. Because where else would you learn empathy, the way that, you know, we can learn it, or where else would you learn to be nice to people and to treat people better than perhaps I have in the past, you know, you just, you just don't take a course in that. [00:42:15] And so I find that you can, uh, you can learn to dance in the rain. [00:42:19] Megan Willis Beik: Yeah. I mean, I, she is brutally honest with me. Uh, sometimes it sucks, but yes, and I, and I appreciate that and I, I think for me, you know, because she is a child, it's finding that age appropriate truthfulness and, and bluntness with her. Um, we do this thing when we're frustrated, we scream in a pillow. [00:42:43] I don't even know like where we got it from, but it's just kind of always been our thing. [00:42:47] And sometimes, you know, she'll text message me from school when she's having a bad day and she's just like, I need to scream in a pillow. She comes home and I have the pillow waiting and, and we just scream it out. And that's really kind of been our therapy thing together. When she's mad at me, I'll tell her, go scream in a pillow. [00:43:04] I'm mad at her, she'll tell me, go scream in a pillow. [00:43:07] [00:43:07] Meghan Beier, PhD: As we just heard it's important for family and loved ones to set aside time for their own self care and enjoyed activities. This is also true for someone living with a rare medical condition. For individuals living with a rare disease all too often, the diagnosis and medical appointments can take center stage in the person's life. It can become the person's identity, which has its own positive and negative consequences. [00:43:33] In my own practice, I often hear, especially from individuals with more progressed disease, that hobbies and activities that bring joy are put to the side or forgotten because of symptoms or time constraints. However, focusing on these activities can be extremely important for improving mood and quality of life. Both from a behavioral activation and ACT value standpoint, these can be extremely important. In this next section, Doug shares how he has tried to continue to try and incorporate hobbies and learning into his everyday life. [00:44:07] Doug Kirby: when I first got this disease, people would say things like, I'm not gonna let this disease define me. And it doesn't, but it's part of me. [00:44:15] Meghan Beier, PhD: Mm-hmm. [00:44:16] Doug Kirby: Right, but it's not all of me. And I think that's the first thing you have to think about. And even though there are things that I used to do to relax, I used to play the piano and guitar and, and do some other things. [00:44:24] Gardening. I loved gardening and I just can't do any of that anymore the way I used to. And, and so I had to find some different things and, um, I'm kind of a lifelong learner and so I, uh, subscribed to a couple of different, uh, TV or websites, I dunno what to call them that, um, are actually full series lectures. [00:44:44] And, um, uh, and I love that. Um, and, um, I, I tend to lean towards the science side, but my wife and I, when we sit on the couch at night, sometimes we'll find something like a CBT course or, or, uh, we're doing one right now on when new vocabulary. [00:44:59] Meghan Beier, PhD: That's [00:44:59] Doug Kirby: And so, you know, those are the kinds of things that we can do and have had to replace the things that we used to do. [00:45:05] Um, and you just have to be forward thinking that way. Um, just because you, you know, I've lost the use of this hand or this side of my body, doesn't mean that I'm useless and I just need to find different uses me. [00:45:18] Meghan Beier, PhD: Hmm. Where do you mind me asking more about specifically where you get those courses? Because I feel like that would be really interesting [00:45:26] Doug Kirby: Yeah, so, um, there's a, uh, um, a company called wondrium and, um, it, it, um, it's like $119 a year, and it is the best money you will ever spend on programming. Um, I don't know if anyone else has ever done any of those, but, but they're awesome and, you know, I'll never get through all of them in my lifetime. And so it's, um, anything from, from astrophysics to, um, vocabulary and, uh, learning about different countries and the medieval period and, you know, just things that, that, um, I didn't take advantage of when I was in school earlier in life. [00:46:08] And, and, and now I'm trying to kind of work back and we're, we're empty nesters, so that works best for us. We have five kids and, and, uh, most of 'em live close by except for one that's in Texas. And, um, um, you know, we've just found that we have to use our time differently. And, uh, um, I've, I've traveled now a little bit. [00:46:27] I've been on the airplane several times and it wears me out. But I can do. And, um, and so we're, we're getting better that we're learning what we can do and how to take advantage of the system. You know? Um, if, if you're having struggles, you know, take, take advantage of the wheelchair service in the airport, [00:46:45] you know, and, and take, take advantage of those things. [00:46:47] You're not abusing the system to do that. That's why there. [00:46:51] Meghan Beier, PhD: follow up. Question I've often heard from people that they. Feel, um, they don't wanna use those services. They feel either frustrated about ha being forced to kind of use those services or to use an assistive device how do you respond to that if that shows up in your support group? [00:47:08] Doug Kirby: know what you, that's what they're there for. And, um, you know, I have a handicapped placard or a lot of my license plates so we can park close and, and, um, I use a wheelchair when I'm out and about because I can't walk that far. And, and, um, you know what? I just never felt self-conscious about that the way I understand some people do. [00:47:28] And, um, but you know, what, if you, if you're. Decisions, life decisions about your quality of life and what you want to do, then you need to take advantage of some of those other, um, opportunities that are out there to help you get through things a little bit easier. And, uh, you know what? And if somebody looks at you fine, just say, hi, , you know? [00:47:49] cuz uh, you know, I can, I can walk and I worry sometimes that people see me getting outta the car and, you know, and, and I can walk. You can tell I've got a problem. I'm not walk very well. But, but you know what? I I, um, I, I've already decided, if anyone ever says to me, you, you look well enough not to need that handicap pocket, I would say thank you. You noticing that? You know, cause I work really hard to look well enough not to have to use that handicap. [00:48:15] Meghan Beier, PhD: Before we move into this final section of the podcast. I want to say thank you to all the community members that gave of their time, expertise and emotional energy to participate in this project. [00:48:27] We close out this episode and this series hearing again from Lydia and Rebecca. They dig into the specific resources SRNA provides to community members, but also to medical professionals. Mental health providers. There are a few things here that you can take advantage of such as getting listed on the SRNA directory or learning more about the diagnoses we have explored in this series. We hear first from Lydia. [00:48:54] Lydia Dubose: outside of our just ongoing support group meetings or education programs, um, we have our, uh, podcasts. Um, we have a myelitis helpline. Um, we have a lot of, uh, information sheets about each disorder, uh, for people who wanna dive in and really learn more about each of them. [00:49:16] Um, We also have on our website a list of kind of medical professionals, um, and, uh, and our support group leaders that people can reach out to locally. Um, one big thing that people don't always realize that we have is a resource library. Um, and people can search the resource library for. Different topics, different disorders, um, different symptom management. [00:49:43] And that is one of the best places that, um, both our community members and for professionals who wanna treat or help support our community members, uh, can look for, um, For good information, um, especially for, uh, psychologists or counselors. Uh, I'd recommend going and taking 15 minutes looking at our resource library. [00:50:05] Um, I know just last, uh, last fall we had a symposium and, uh, there were a couple of sessions that were, uh, presented on by psychologists, um, and, uh, topics around, uh, cognitive effects of these disorders. And so just spending some time getting to know that. Can go a long way to helping people understand a little bit better. [00:50:27] Meghan Beier, PhD: Awesome, and I will link to all of that so people can find it easily. and I would definitely advocate for if you are a mental health provider, getting on your directory because, um, it's, it's very easy to search and it seems like that would be a good resource for people to look for a mental health provider that maybe has that background and expertise. [00:50:47] Rebecca, can you share a little bit more maybe about, Any resources that might be specific to, uh, psychologists, counselors, therapists, you know, other medical professionals. [00:51:00] Rebecca Whitney: Uh, One thing that, that immediately comes to mind for me is our, um, SRNA, annual Quality of Life Family Camp. So it's meant to be, um, educational. It's meant to be fun. It's meant to connect families and kids, um, to one another. Um, but I think it's, it's huge. It was huge for my family, for my child, um, and especially for our mental health and our wellbeing. Living in the context of, of my son's diagnosis. So, um, that is probably one of the overwhelming benefits, um, of camp is just for people and families and kids to be able to connect, to be able to see that they are not alone. I know one of the first things my son said to me when we went to camp was, we're not so different. And he loved it. He absolutely loved it. And then he seen another child who had, you know, mobility, um, very similar to him. And he said he takes steps just like I do, because he did work the same as his peers at school and then, you know, had to use the wheelchair as well. So, um, just being able to see themselves in others, um, it's huge. [00:52:26] And I, we also have. Uh, medical professionals who volunteer at camp. Um, we've had, uh, neuropsychologists school specialists, um, who have come in. So it's an opportunity for, um, other mental health professionals as well to be able to possibly volunteer and support, um, individuals in the community in that way. [00:52:52] Other possibilities would be our myelitis helpline. So it doesn't have to be just something for those diagnosed, but if they're looking for specific resources, um, or have questions, um, because they're, they're treating someone with one of the disorders, um, that would be an excellent. Resource for them to access. [00:53:11] And like Lydia mentioned, our resource library has a plethora of information podcasts, uh, past video from our symposia. Um, there's a lot to dive into in our resource library, so, um, and I think, you know, our phone number. one great way to get directly connected to someone who can help pinpoint resources or professionals, um, that they may be looking for or would like to connect to. [00:53:42] Meghan Beier, PhD: Okay, great. And I will post that as well. So people have your phone number. Um, to me it sounds like, you know, one of the things. Stood out to me as both of you were talking was that, you know, that kind of one page or information sheet about the diagnosis, that's a great way to get started. If you are seeing somebody for the first time and it's a diagnosis that you're not familiar with, you can at least get some of the basics and then dive in deeper from there. [00:54:06] is there anything else that you think we haven't talked about so far that people who are listening should know about, uh, SRNA? [00:54:14] Rebecca Whitney: I think just that we're. We're ready. We want to help. Um, we will do our absolute best for anyone that contacts us. Um, and it doesn't matter where someone is in their diagnosis, whether they've been newly diagnosed or they've been living with a diagnosis for 40 years. We wanna hear from them. We enjoy connecting with our community. [00:54:51] Um, and you know, speaking as someone who, who does have a personal connection to it, it's, it's also healing for me. To connect with others, um, in the community. Um, and even for medical professionals, mental health professionals that have questions and want to reach out, we wanna hear from them and we wanna add them to our medical professional network because it's, it's, there's a, there's a great need and people don't always know, um, exactly how to go about accessing those individuals. [00:55:26] So, [00:55:27] Meghan Beier, PhD: Great. And they can also call the phone number, the, the main phone number if a men mental health professional wants more information or get added to the directory or things like that. [00:55:36] Rebecca Whitney: Yes, absolutely. [00:55:37] Meghan Beier, PhD: Lydia, any final thoughts or words. [00:55:41] Lydia Dubose: Um, I don't, I don't think there's anything else that, um, anybody needs to know about SRNA today, but I would say, You know, SRNA we're always growing and always changing. So, you know, just cuz we didn't mention something here today doesn't mean it's not, uh, something that we might do in the future. So, if people have, um, questions or, or areas that they, they would like to see more support or, um, or maybe if, if, uh, Professionals are wanting to find somebody to collaborate with, to do more work in this area. [00:56:20] Um, we're always open, um, and, and they can always reach out. [00:56:23] Meghan Beier, PhD: As we close this three part series on rare neuroimmune disorders. I want to take a moment to reflect on what we've embarked on together. Throughout these episodes, we've explored the complexities of living with a rare neuroimmune condition. We've explored the significance of mental health support. And we've highlighted the invaluable resources available through SRNA and a as well as are there community support providers. We've heard powerful stories from individuals and families that have navigated these challenges and have emphasized the profound impact of feeling understood and connected. These stories underscore the importance of empathy, education, and support in managing not only the physical symptoms, but the emotional and psychological hurdles that accompany rare diagnoses. [00:57:11] For mental health professionals this series serves as a call to action to deepen our own understanding of rare neuroimmune disorders, as well as other rare conditions and to strengthen our ability to provide compassionate, informed care. By engaging with resources like SRNA and getting ongoing education, we can better support our clients and their families on their journeys. I encourage everyone, whether directly affected by these conditions are looking to support someone who is managing a rare condition to reach out, connect, continue learning. We can build a more empathetic and knowledgeable community. Thank you for joining me and these three episodes. [00:57:52] And remember. You're not alone. [00:57:53] / [00:57:53] Conclusion --- [00:57:53] [00:57:56] Meghan Beier, PhD: thank you for listening to this series. If you're interested in earning continuing education credits for listening. Please visit FindEmpathy.com/Learn. It's important to note that when you pursue these credits through the series, you're also making a meaningful contribution, a portion of the proceeds from all continuing education credits for this series will be donated to SRNA. An organization that as you've heard is dedicated to aiding individuals and families managing rare neuroimmune disorders. While, we feel strongly about keeping our education freely available. We see great value and supporting organizations like SRNA through paid continuing education credits. Please note also, when you get continuing education credits with us, you help to support this podcast and education. [00:58:51] Our goal is to help people living with challenging medical conditions find the mental health providers who understand their diagnosis. Our education and this podcast is focused on increasing The number of mental health providers who can help. [00:59:06] 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 find empathy.com and select get listed. We would love to connect with you on social media. Look for us on Facebook, LinkedIn, Twitter, and Instagram. [00:59:25] If you have suggestions for topics you would like covered by this podcast, let us know. Our email is info at findempathy. com. 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. [00:59:44] 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. Thank you so much for listening, and we look forward to you joining us in the next episode.