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Careful assessment and individualized care, provided by a skilled multidisciplinary care team, are emphasized in the holistic approach to neuropalliative care, which considers physical, psychological, social, spiritual, and existential aspects for people with neuromuscular diseases. In this episode, Gordon Smith, MD, FAAN, speaks with David J. Oliver, PhD, FRCP, FRCGP, FEAN, author of the article "Neuropalliative Care in Neuromuscular Disorders" in the Continuum® December 2025 Neuropalliative Care issue. Dr. Smith is a Continuum® Audio interviewer and a professor and chair of neurology at Kenneth and Dianne Wright Distinguished Chair in Clinical and Translational Research at Virginia Commonwealth University in Richmond, Virginia. Dr. Oliver is an honorary professor of Tizard Centre at the University of Kent in Canterbury, United Kingdom. Additional Resources Read the article: Neuropalliative Care in Neuromuscular Disorders Subscribe to Continuum®: shop.lww.com/Continuum Earn CME (available only to AAN members): continpub.com/AudioCME Continuum® Aloud (verbatim audio-book style recordings of articles available only to Continuum® subscribers): continpub.com/Aloud More about the American Academy of Neurology: aan.com Social Media facebook.com/continuumcme @ContinuumAAN Host: @gordonsmithMD Full episode transcript available here Dr Jones: This is Dr Lyell Jones, Editor-in-Chief of Continuum. Thank you for listening to Continuum Audio. Be sure to visit the links in the episode notes for information about earning CME, subscribing to the journal, and exclusive access to interviews not featured on the podcast. Dr Smith: Hello, this is Dr Gordon Smith. Today I've got the great pleasure of interviewing Dr David Oliver about his article on neuropalliative care and neuromuscular disorders, which appears in the December 2025 Continuum issue on neuropalliative care. David, welcome to the Continuum podcast, and please introduce yourself to our audience. Dr Oliver: Thank you. It's a pleasure and a privilege to be here. I'm a retired consultant in palliative medicine in the UK. I worked at the Wisdom Hospice in Rochester for over thirty years, and I'm also an honorary professor at the University of Kent in Canterbury in the UK. I've had a long interest in palliative care in neurological diseases. Hopefully we can talk about a bit later. Dr Smith: I really look forward to learning a little bit more about your path and experiences. But I wonder if, before we get into the meat of neuropalliative care with a focus on neuromuscular, if maybe you can kind of set the stage by just defining palliative care. I mean, my experience is that people think of this in different ways, and a lot of folks think- hear palliative care, and they immediately go to end-of-life care or comfort care. So, what- how should we think about maybe the discipline of palliative care or neuropalliative care? Dr Oliver: I see palliative care as very much responding to people's needs, whether that's physical needs, psychological needs, social or spiritual or existential. So, it can be much earlier in the disease progression. And I think particularly for neurological diseases, early involvement may be very important. Dr Smith: That was actually going to be my first substantive question, really, was when to begin the conversation and what does that look like and how does it evolve over time. You have a really great figure in the article that kind of emphasizes the various stages within a patient's journey that, you know, palliative care can become involved. But I wonder if you could use ALS as a good example and describe what that looks like from when a patient is first diagnosed with ALS through their course? Dr Oliver: I think particularly in ALS at the beginning, soon after diagnosis, someone may have a lot of distress and a lot of questions that they need answering. This is a disease they've not had any contact with before. And they don't understand what's going on, they don't understand the disease. So, there may be a great need to have the opportunity to talk about the disease, what may happen, what is happening, how it's going to affect them and their family. As think time goes on, there may be later they develop swallowing problems, and that will need to be talking about a feeding tube and gastrostomy. And again, there may be a lot of issues for the person and their family. As they deteriorate, they may have respiratory problems and need to have discussion about ventilatory support, either by PAP, noninvasive ventilation, or even tracheostomy. And again, I think that's a big issue that needs wide discussion. And then it may be at the final few months of the disease, where they are deteriorating, that they may have increased needs, and their families may have those needs after the death. And I think often families bereaved from someone with a neurological disease such as ALS need a great deal of support, having many mixed emotions. There may be a feeling of relief that they're not involved in that caring, but then a feeling of guilt that they shouldn't be having those feelings. So, I think that can happen over a period of… what with ALS it may be two, three, four years, but it may be similar changes over time with any patient with a neurological disease. It may be ten or fifteen years with Parkinson's or five to ten years with a progressive supranuclear palsy, but there'll be this similar need to look at palliative care during their disease progression. Dr Smith: So, I'm curious at the time of diagnosis of ALS, how far out in the future do you provide information? So a specific question would be, do you talk about end-of-life management? In my experience, ALS patients are sometimes interested in knowing about that. Or do you really focus on what's in front of you in the next three to six months, for instance? Dr Oliver: I think it's both. Obviously, we need to talk about the next three to six months, but often giving patients the opportunity to talk about what's going to happen in the future, what may happen at the end of life, I think is important. And I think a disease like ALS, if they look it up on the Internet, they may have a lot of very distressing entries there. There's a lot about how distressing dying with ALS is. And actually confront those and discuss those issues early is really important. Dr Smith: So of course, the other thing that comes up immediately with an ALS diagnosis---or, for that matter, with any other neurodegenerative problem---is prognosis. Do you have guidance and how our listeners who are giving a diagnosis of ALS or similar disorder should approach the prognostication discussion? Dr Oliver: It's often very difficult. Certainly in the UK, people may have- be a year into their disease from their first symptoms before they're diagnosed, and I've seen figures, that's similar across the world. So, people may be actually quite way through their disease progression, but I do think we have to remember that the figures show that at five years, 25% of people are still alive, and 5 to 10% are still alive at ten years. We mustn't say you are going to die in the next two or three years, because that may not be so. And I think to have the vagueness but also the opportunity to talk, that we are talking of a deterioration over time and we don't know how that will be for you. I always stress how individual I think ALS is for patients. Dr Smith: One of the other concepts that is familiar with anyone who does ALS and clearly comes through in your article---which is really outstanding, by the way. So, thank you and congratulations for that---is the importance of multidisciplinary teams. Can you talk a little bit about how neuropalliative care sits within a multidisciplinary care model? Dr Oliver: I think the care should be multidisciplinary. Certainly in the UK, we recommended multidisciplinary team care for ALS in particular, from the time of diagnosis. And I think palliative care should be part of that multidisciplinary team. It may be a member of the team who has that palliative care experience or someone with specialist experience. Because I think the important thing is that everyone caring for someone with ALS or other neuromuscular diseases should be providing palliative care to some extent: listening to people, discussing their goals, managing their symptoms. And a specialist may only be needed if those are more complicated or particularly difficult. So, I think it is that the team needs to work together to support people and their families. So, looking at the physical aspects where the physiotherapist or occupational therapist may be very important, the psychologicals are a counsellor or psychologist. The social aspects, most of our patients are part of wider families, and we need to be looking at supporting their carers and within their family as well as the person. And so that may involve social work and other professionals. And the spiritual, the why me, their fears about the future, may involve a spiritual counsellor or a chaplain or, if appropriate, a religious leader appropriate to that- for that person. So, I think it is that wider care provided by the team. Dr Smith: I'm just reflecting on, again, your earlier answers about the Continuum of neuropalliative care. Knowing your patient is super valuable here. So, having come to know someone through their disease course must pay dividends as you get to some of these harder questions that come up later during the disease progression. Dr Oliver: I think that's the very important use of palliative care from early on in the diagnosis. It's much easier to talk about, perhaps, the existential fears of someone while they can still talk openly. To do that through a communication aid can be very difficult. To talk about someone's fear of death through a communication aid is really very, very difficult. The multidisciplinary team, I think, works well if all the members are talking together. So that perhaps the speech therapist has been to see someone and has noticed their breathing is more difficult, comes back and talks to the doctor and the physiotherapist. The social worker notices the speech is more difficult and comes back and speaks to the speech therapist. So, I think that sort of team where people are working very closely together can really optimize the care. And as you said, knowing the person, and for them to know you and to trust you, I think that's important. Those first times that people meet is so important in establishing trust. And if you only meet people when they're very disabled and perhaps not able to communicate very easily, that's really difficult. Dr Smith: I think you're reading my mind, actually, because I was really interested in talking about communication. And you mentioned a few times in your article about voice banking, which is likely to be a new concept for many of our listeners. And I would imagine the spectrum of tools that are becoming available for augmented communication for patients who have ALS or other disorders that impair speech must be impressive. I wonder if you could give us an update on what the state of the art is in terms of approaching communication. Dr Oliver: Well, I think we all remember Stephen Hawking, the professor from Cambridge, who had a very robotic voice which wasn't his. Now people may have their own voice on a communication aid. I think the use of whether it's a mobile phone or iPad, other computer systems, can actually turn what someone types into their own voice. And voice banking is much easier than it used to be. Only a few years ago, someone would have to read for an hour or two hours so the computer could pick up all the different aspects of their voice. Now it's a few minutes. And it has been even- I've known that people have taken their answer phone off a telephone and used that to produce a voice that is very, very near to the person. So that when someone does type out, the voice that comes out will be very similar to their own. I remember one video of someone who'd done this and they called their dog, and the dog just jumped into the air when he suddenly heard his master's voice for the first time in several months. So, I think it's very dramatic and very helpful for the person, who no longer feels a robot, but also for their family that can recognize their father, their husband, their wife's speech again. Dr Smith: Very humanizing, isn't it? Dr Oliver: There is a stigma of having the robotic voice. And if we can remove that stigma and someone can feel more normal, that would be our aim. Dr Smith: As you've alluded to, and for the large majority---really all of our ALS patients, barring something unexpected---we end up in preparing for death and preparing for end of life. I wonder what advice you have in that process, managing fear of death and working with our patients as they approach the end of their journey. Dr Oliver: I think the most important thing is listening and trying to find what their particular concerns are. And as I said earlier, they may have understood from what they've read in books or the Internet that the death from ALS is very distressing. However, I think we can say there are several studies now from various countries where people have looked at what happens at the end of life for people with ALS. Choking to death, being very distressed, are very, very rare if the symptoms are managed effectively beforehand, preparations are made so that perhaps medication can be given quickly if someone does develop some distress so that it doesn't become a distressing crisis. So, I think we can say that distress at the end of life with ALS is unusual, and probably no different to any other disease group. It's important to make sure that people realize that with good symptom control, with good palliative care, there is a very small risk of choking or of great distress at the end of life. Dr Smith: Now, I would imagine many patients have multiple different types of fear of death; one, process, what's the pain and experience going to be like? But there's also being dead, you know, fear of the end of life. And then this gets into comments you made earlier about spirituality and psychology. How do you- what's your experience in handling that? Because that's a harder problem, it seems, to really provide concrete advice about. Dr Oliver: Yeah. And so, I think it's always important to know when someone says they're frightened of the future, to check whether it is the dying process or after death. I've got no answer for what's going to happen afterwards, but I can listen to what someone may have in their past, their concerns, their experience. You know, is their experience of someone dying their memories of someone screaming in pain in an upstairs bedroom while they were a child? Was their grandfather died? Trying to find out what particular things may be really a problem to them and that we can try and address. But others, we can't answer what's going to happen after death. If someone is particularly wanting to look at that, I think that may be involving a spiritual advisor or their local spiritual/religious leader. But often I think it's just listening and understanding where they are. Dr Smith: So, you brought up bereavement earlier and you discussed it in the article. In my experience is that oftentimes the families are very, very impacted by the journey of ALS. And while ALS patients are remarkably resilient, it's a huge burden on family, loved ones, and their community. Can you talk a bit about the role of palliative care in the bereavement process, maybe preparing for bereavement and then after the loss of their loved one? Dr Oliver: Throughout the disease progression, we need to be supporting the carers as much as we are the patient. They are very much involved. As you said, the burden of care may be quite profound and very difficult for them. So, it's listening, supporting them, finding out what their particular concerns are. Are they frightened about what's going to happen at the end of life as well? Are they concerned of how they're going to cope or how the person's going to cope? And then after the death, it's allowing them to talk about what's happened and how they are feeling now, cause I think having had that enormous input in care, then suddenly everything stops. And also, the support systems they've had for perhaps months of the carers coming in, the doctor, the nurse, the physiotherapist, everyone coming in, they all stop coming. So, their whole social system suddenly stops and becomes much reduced. And I'm afraid certainly in the UK if someone is bereaved, they may not have the contact with their friends and family because they're afraid to come and see them. So, they may become quite isolated and reduced in what they can do. So, I think it's allowing them to discuss what has happened. And I think that's as important sometimes for members of the multidisciplinary team, because we as doctors, nurses and the wider team will also have some aspects of bereavement as we face not seeing that person who we've looked after for many years and perhaps in quite an intensive way. So, we need to be looking at how we support ourselves. And I think that's another important role of the multidisciplinary team. I always remember in our team, sometimes I would say, I find this person really difficult to cope with. And the rest of the people around the team would go have a sigh of relief because they felt the same, but they didn't like to say. And once we could talk about it, we could support each other and work out what we could do to help us help the patient in the most effective way. Dr Smith: Well, David, I think that's a great point to end on. I think you've done a really great job of capturing why someone would want to be a palliative care specialist or be involved in palliative care, because one of the themes throughout this conversation is the very significant personal and care impact that you have on patients and families. So, I really appreciate your sharing your wisdom. I really encourage all of our listeners to check out the article, it's really outstanding. I wonder if maybe you might just briefly tell us a little bit about how you got into this space? It's obviously one for which you have a great deal of passion and wisdom. How did you end up where you are? Dr Oliver: I became interested in palliative care as a medical student, and actually I trained as a family doctor, but I went to Saint Christopher's Hospice following that. I had actually had contact with them while I was a medical student, so I worked Saint Christopher's Hospice in South London when Dame Cecily Saunders was still working there. And at that time Christopher's had sixty-two beds, and at least eight of those beds were reserved for people with ALS or other neurological diseases. And I became very involved in one or two patients and their care. And Dame Sicily Saunders asked me to write something on ALS for their bookshelf that they had on the education area. So, I wrote, I think, four drafts. I went from sort of C minus to just about passable on the fourth draft. And that became my big interest in particularly ALS, and as time went on, in other neurological diseases. When I went to the Wisdom Hospice as a consultant, I was very keen to carry on looking after people with ALS, and we involved ourselves with other neurological patients. That's how I got started. Having that interest, listening to patients, documenting what we did became important as a way of showing how palliative care could have a big role in neurological disease. And over the years, I've been pressing again and again for the early involvement of palliative care in neurological diseases. And I think that is so important so that there can be a proper holistic assessment of people, that they can build up the trust in their carers and in the multidisciplinary team so that they can live as positively as possible. And as a result of that, that their death will be without distress and with their family with them. Dr Smith: Well, David, you've convinced and inspired me, and I'm confident you have our listeners as well. Thank you so much for a really informative, enjoyable, inspiring conversation. Dr Oliver: Thank you for inviting me. Dr Smith: Again, today I've been interviewing Dr David Oliver about his article on neuropalliative care and neuromuscular disorders, which appears in the December 2025 Continuum issue on neuropalliative care. Be sure to check out Continuum Audio episodes from this and other issues, and thanks to our listeners for joining us today. Dr Monteith: This is Dr Teshamae Monteith, Associate Editor of Continuum Audio. If you've enjoyed this episode, you'll love the journal, which is full of in-depth and clinically relevant information important for neurology practitioners. Use the link in the episode notes to learn more and subscribe. AAN members, you can get CME for listening to this interview by completing the evaluation at continpub.com/audioCME. Thank you for listening to Continuum Audio.

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This month we were delighted to be joined by Tom Royer who is a Visiting Researcher at the Arctic Centre and a Doctoral Researcher at the Faculty of Law at University of Lapland. Tom's work revolves around commercial space ports in the arctic from a more-than-human perspective. This work combines critical legal studies, multispecies justice, and extractivism. These space ports are hubs where commercial spacecraft are stored, worked on, launched, and re-entered (sometimes whole, sometimes not). The Arctic is not a new venue for commercial space activities, with some ports having a more than 50-year history. This is partially because satellites orbiting the poles can circle the globe in a single day. Tom opens a whole world to us in relation to commercial space ports and gives us a lot of food for thought in terms of impacts of these operations. Tom would like to make sure listeners are aware that everything he says during the episode is his own critical interpretations rather than simple factual statements. While his arguments map to onto existing critical literature, they are still his own interpretation of his and stand as supported analytical claims. Want to learn more about Tom's work? Check out his university profile https://research.ulapland.fi/en/persons/tom-royer/ Check out High North News https://www.highnorthnews.com/en Check out Barents Observer https://www.thebarentsobserver.com/ Check out Keeptrack.space https://keeptrack.space/ 

Severe acute brain injury presents acute and longitudinal challenges. Addressing total pain involves managing physical symptoms and providing emotional, social, and spiritual support to enhance quality of life for patients and their families. In this episode, Kait Nevel, MD, speaks with Claire J. Creutzfeldt, MD, author of the article "Neuropalliative Care in Severe Acute Brain Injury and Stroke" in the Continuum® December 2025 Neuropalliative Care issue. Dr. Nevel is a Continuum® Audio interviewer and a neurologist and neuro-oncologist at Indiana University School of Medicine in Indianapolis, Indiana. Dr. Liewluck is a professor in the department of neurology at the University of Washington in Seattle, Washington. Additional Resources Read the article: Neuropalliative Care in Severe Acute Brain Injury and Stroke With Dr. Claire Creutzfeldt Subscribe to Continuum®: shop.lww.com/Continuum Earn CME (available only to AAN members): continpub.com/AudioCME Continuum® Aloud (verbatim audio-book style recordings of articles available only to Continuum® subscribers): continpub.com/Aloud More about the American Academy of Neurology: aan.com Social Media facebook.com/continuumcme @ContinuumAAN Host: @IUneurodocmom Guest: @cj_creutzfeldt Full episode transcript available here Dr Jones: This is Dr Lyell Jones, Editor-in-Chief of Continuum. Thank you for listening to Continuum Audio. Be sure to visit the links in the episode notes for information about earning CME, subscribing to the journal, and exclusive access to interviews not featured on the podcast. Dr Nevel: Hello, this is Dr Kait Nevel. Today I'm interviewing Dr Claire Creutzfeldt about her article on neuropalliative care in severe acute brain injury and stroke, which appears in the December 2025 Continuum issue on neuropalliative care. Claire, welcome to the podcast, and please introduce yourself to the audience. Dr Creutzfeldt: Thanks, thanks for having me. Yeah, I'm an associate professor of neurology at the University of Washington. I'm a stroke neurologist and palliative care researcher and really have focused my career on how we can best integrate palliative care principles into the care of patients with severe stroke and other neurocritical illness. Dr Nevel: Wonderful. Well, I'm looking forward to talking to you today about your excellent article that I really enjoyed reading. To get us started, can you tell us what you feel is the most important takeaway from your article for the practicing neurologist? Dr Creutzfeldt: Yeah. You know, I think one is always a little biased by what one is working on currently. And I think what I'm most excited about or feel more strongly about is this idea that stroke and severe acute brain injury are not an event, but really a chronic illness that people are left with usually for the rest of their lives, that change their life radically. And I think that education, research funding, also the clinical setting, current healthcare models aren't set up for that. And this idea that severe acute brain injury, you know, should be viewed as a lifelong condition that requires support across all ranges of goals of care. So curative, restorative, palliative and end-of-life care. Dr Nevel: Yeah, I love that part of your article, how you really highlighted that concept. And I think obviously that's something that we see in neurology and learn, especially as we transition out of our residency stages. But I think especially for the trainees listening, can sometimes be hospital inpatient-heavy, if you will, that kind of you can lose sight of that, that these acute strokes, severe acute brain injury, it turns into a chronic illness or condition that patients are dealing with lifelong. Dr Creutzfeldt: Often what we do in a very acute setting is like, is really cool and sexy and like, we can cure people from their stroke if they come, you know, at the right time with the right kind of stroke to the right hospital. And often the symptoms that people come in with much later on are harder to treat and address, partly because the focus in education, clinical and research just hasn't been as much on that time. Dr Nevel: Yeah, absolutely. So, can you talk to us about this concept of total pain? What does it mean, and how do we incorporate this concept into the way that we view our approach, our patient care? Dr Creutzfeldt: Total pain is a very old word, but it's sort of coming back into fashion in the palliative care world because it really describes all those sources of suffering or sources of distress, like, beyond what we sort of really think of as sort of the physical symptoms in recovery of stroke. As many of you know, palliative care often thinks in this multidimensional way of the physical distress, physical pain, but also psychological, emotional, social and spiritual, existential. And both- we sort of created sort of a figure that incorporates all of them and also includes both patients and their family members. They share some of these sources of distress, but they also have distinct ones that need to be addressed. And at the core of that total pain is what we need to provide, is sort of optimal communication and goals-of-care prognosis. Dr Nevel: Yeah, I'm thinking about all of those aspects and not just focusing on one. How does the disease trajectory of severe acute brain injury and stroke play a role in the palliative care approach? And how should we kind of going back to that original point of this idea of severe acute brain injury being an acute event and then oftentimes turning into kind of a chronic condition? How does that play a role in how we address palliative care with our patients, or kind of the stages of palliative care with our patients? Dr Creutzfeldt: Yeah, I think several things, especially for neurologists, is the more traditional palliative care illnesses, like cancer or congestive heart failure, illnesses where people are diagnosed when they're still functioning at a relatively high level and tend to have time to consider their prognosis and their goals of care in the end of life wishes and to meet with palliative care and to consider their personhood. Who am I? What's most important for me? And stroke, people with stroke, they not only present at their worst, they meet us at their worst, at a time when the patient themselves usually can't speak for themselves, when their personhood has been stripped from them. And then as providers, we, you know, we often really just get that one opportunity to get the conversation right and to guide people towards, you know, what we would call optimal and goal-concordant care. So, the challenges are many. I do think that the burden of these early conversations is on neurologists and really requires the neurologists to show compassion, to learn communication skills, think really hard about how you want to communicate prognosis and goals of care early on, because it's going to color people's experiences and decisions longitudinally. You asked about, sort of, this trajectory. And I do think it's important to think about, you know, what really happens even after the thrombectomy or even after we discharge people, especially from the ICU. Because for us, often after sort of day five or six, you know, we're sort of done. We're thinking about secondary stroke prevention. And, you know, how do I get the patient to rehab or out of the hospital? For the patients and families, this is when it really all just starts. You know, this is when they- when they're first memories are usually, you know, they hardly remember that acute setting. And so, when they are medically stable, we're done with the acute blood pressure treatment where we've removed the Foley, we've made a decision about nutrition. For us that tends to be a time where we let go a little; for patients and families that tends to actually be the time when they have to think about how am I going to live with this and what are the next several months or years going to look like? And so being there for them is important. Dr Nevel: That's such a, I think, important point, that when we have our plan in place, we know medically what the plan is for that patient and we're starting to step back, think about rehab or discharge. That's when oftentimes more quote-unquote "reality" steps in for patients and families about what their future is going to look like. Dr Creutzfeldt: And medical stability is not even close to neurological stability. And so, they are still in the middle of real prognostic uncertainty, and often waxing and waning symptoms or new symptoms coming up for them. Like pain, you know, post thalamic pain syndrome, just as an example, tends to be something that doesn't develop until later. Dr Nevel: Right, right. Absolutely. And since you touched on this concept of prognostic uncertainty, and, you know, that's something that's so challenging in severe acute brain injury, especially the early days when you talk about this, you know, that things tend to become a little bit more certain as more time passes. But these are really hard conversations because a lot of times feel like big decisions that need to be made early on, you know? Dr Creutzfeldt: Huge! Dr Nevel: Sometimes things like trach and PEG and things like that. How do you approach that conversation? I know you talk about that a little bit in your article. You touch on that, some of the, kind of, strategies or concepts that we use in palliative care to approach this prognostic uncertainty with patients. Dr Creutzfeldt: Yeah, I think the challenge is to balance this acknowledging uncertainty with still being able to guide the families and allow them to trust you. So, there are a few things that I have said in the past, and I have taught in the past, and I don't use anymore. They include sentences like I don't have a crystal ball, for example. Nobody was asking you for one. The other one that I want us to avoid, I think, is the sentence we are terrible at prognosticating. Because what I have seen is that that sentence carries on for families. And families at nine months are still saying, well, you guys are terrible at prognosticating. That's what you told me. First of all, it's all relative, and relative to non-neural providers---even at this time using Google and AI, we're actually quite good at prognosticating. It's just that a wide range early on. So that's how I would change that sentence is, early on after stroke, the range of possible outcomes is still very wide. And so, you've communicated uncertainty without saying I have no idea what I'm doing, which is not true. That is in order to help families be able to trust you and also to trust the person who comes after you, because we all know that a week or two after admission, we do know a lot more. And if we told them on day one that we're terrible at prognosticating, it's hard to sort of build that trust again later. You also asked about, you know, communication strategies. And I think it's this range of possible outcomes that I think is a good guideline for us to work on. And that range, sort of like a confidence interval, is still very wide early on. And as we collect more information over time, both about the clinical scenario that is evolving in front of us and about the patient who we are learning more about over time, this confidence interval becomes smaller. And that's where this idea of the best case/worst case scenario sort of conversation, for example, comes from: that range of possible outcomes. Dr Nevel: So, what to you is most challenging about palliative care for patients with severe acute brain injury and stroke? Dr Creutzfeldt: I think the biggest challenge in stroke care is balancing restorative and curative care with palliative and end-of-life. And that is especially early on when sort of everything is possible, when patients and families want to hear the good news and, I think, are also quite willing to hear the bad news, and probably should. So, I think that that communication is hard when, you know, really we want to provide goal-concordant care. We want to make sure that people get that care that is most important to them and can meet the outcomes that are most important to them. Dr Nevel: Yeah, agree. What is most rewarding? Dr Creutzfeldt: I think these patients and families have enormous needs and are extremely grateful if they can find someone that they can trust and who can guide them and who will stick with them. And when I say someone, I think that can be a team. That always depends on how we communicate. In the ideal world, it would be the same person following someone over time, the patient and the family over time. But in our current healthcare system, we're usually moving on from one place to another and being able to communicate with the people that come after you. Telling the family that you're a team and supporting them through that, I think, is really important. Dr Nevel: Yeah. And like you touched upon, patients and families, I think oftentimes they're looking for, you mentioned, you know, the sharing and communication and they're looking for information. Dr Creutzfeldt: You know, what's really rewarding is working with a team. And health care has really excelled at that. And I think we have a lot done from them is that it's not always the MD that family needs. And we have a lot of people at our side, and I think we need more of them. Chaplains, social workers; psychologists, actually, I think; and nurses or- in an ideal world, would really work together to support these multidisciplinary, multidimensional symptoms. Dr Nevel: Yeah. I think it benefits both the patient and the care team, too. Dr Creutzfeldt: Absolutely! Dr Nevel: It's helpful to be part of a team. You know, there's camaraderie in that and, like, a shared goal, and I think the thought is rewarding, too. Dr Creutzfeldt: If we really try and think about severe stroke as a chronic illness or severe acute brain injury as a chronic illness not unlike cancer, then if you think about the systems that have been built for cancer where an entire team of providers follows the patient and their family member over time, I think we need that, too. Dr Nevel: Yeah, I agree. That point, every member of the team has overlapping things, but has a slightly individual role to a degree too, which is also helpful to the patient and the family. You talked about this a little bit in your article, and I want to hear more from you about what we know about healthcare disparities in this area of medicine and in providing palliative care for patients with severe acute brain injury and stroke. Dr Creutzfeldt: Yeah, I think actually a lot of the huge decisions that we make, especially early on, are highly variable. And can identify people by various things, whether it's their race or ethnicity or sex or age, or even where they live in the United States. But decisions tend to be made differently. And so, just as an example, we know that I think people who identify as black, for sure, are less likely to receive the acute, often life-saving interventions like TNK or thrombectomy and more likely to undergo longer-term, life-prolonging treatment like PEG and trach. That seems true, after adjusting for clinical severity and things like that. And so disparities like that may be based on cultural preferences or well-informed decisions, and then we can support them. But of course, unfortunately there's a clear idea when we see, often, unexplained variability that a lot is due to uninformed decisions and poor communication and possibly racism in certain parts. And that is, of course, something that has to be addressed. Dr Nevel: Yeah, absolutely. What are future areas of research in this area? I know you do a lot of research in this area and I'd love to hear about some of it and what you think is exciting or kind of new and going to change the way we think about things, perhaps. Dr Creutzfeldt: I think every aspect of stroke continues to be exciting and just, you know, our focus of today and my research is on palliative care. I mean, obviously, the things we can do in rehab these days have to be embraced, and the acute stuff. But I think this longitudinal support, an ideally longitudinal multidisciplinary support for patients and families, requires more research. I think it will help us with prognosis. It will help us with communicating things early on and learning more about sort of multidimensional symptoms of these patients over time. That requires more research. And then, how can we change the healthcare system---in a sustainable way, obviously---to maximize quality of life for the survivors and their families? Dr Nevel: Going back to that total pain again, making sure that we're incorporating that longitudinally. Dr Creutzfeldt: I think there are currently 94 million people worldwide living with the aftermath of a stroke. I joined a stroke survivor support group recently. People are supporting each other that have that had their stroke, like, 14 years ago and are still in that just to show that this is not one and done. People are still struggling with symptoms afterwards and want support. Dr Nevel: Before we close out, is there anything else that you'd like to add? Dr Creutzfeldt: Your questions have all been great, and I think one observation is that we've talked a lot about, sort of, new ideas of the need for longitudinal care for patients after severe stroke. There's still a ton for all of us to do to optimize the care we provide in the very acute setting, to optimize the way we communicate in the very acute setting. To make sure we are, for example, providing the same message as our team members and providing truly compassionate goal-concordant care from the time they hit the emergency room throughout. Including time-limited trials, for example. Dr Nevel: Well, thank you so much for chatting with me today about your article on this really important topic. Again, today I've been interviewing Dr Claire Creutzfeldt about her article on neuropalliative care in severe acute brain injury and stroke, which appears in the December 2025 Continuum issue on neuropalliative care. Be sure to check out Continuum Audio episodes from this and other issues. And as always, to our listeners, please check out the article. It's great, highly recommend. And thank you to our listeners for joining us today. And thank you so much, Claire, for sharing your expertise with us today. Dr Creutzfeldt: Thanks for having me. Dr Monteith: This is Dr Teshamae Monteith, Associate Editor of Continuum Audio. If you've enjoyed this episode, you'll love the journal, which is full of in-depth and clinically relevant information important for neurology practitioners. Use the link in the episode notes to learn more and subscribe. AAN members, you can get CME for listening to this interview by completing the evaluation at continpub.com/audioCME. Thank you for listening to Continuum Audio.

Lesia Ogryzko is a visiting fellow with the Wider Europe programme at the European Council on Foreign Relations. She leads a Ukrainian think-tank on security and defence, Sahaidachnyi Security Center, and is board member of Ukraine's biggest expert coalition on the country's reconstruction, RISE Ukraine. Previously, Ogryzko served as international civil servant across the UN system, dealing with human rights and the coordination of UN agencies in Ukraine. She also worked for the Ukrainian government on the implementation of reforms, including in public administration for the cabinet of ministers' reforms delivery office. She is also the co-founder of several civic initiatives, as well as the Ukrainian office of the humanitarian international NGO Save the Children. Prior to that, Ogryzko worked for the Spanish think-tank FRIDE, researching international affairs. She is the author of numerous publications in international media on the Russia-Ukraine war, Ukraine's reconstruction, and the country's civil society.Ogryzko holds an MA in international relations and security studies from the Institute of international relations at the Taras Shevchenko National University of Kyiv and an MA in European public affairs from the Maastricht University, the Netherlands.----------LINKS:https://ecfr.eu/profile/lesia-ogryzko/https://www.linkedin.com/in/lesia-ogryzko-33285163/https://x.com/ogryzko_lhttps://ecfr.eu/profile/lesia-ogryzko/type/media/https://defence.org.ua/en/tag/lesia-ogryzko/----------The Steel Porcupine https://www.thesteelporcupine.com/I'm proud to say that this series of ‘Ukrainian advent' interviews is supported by The Steel Porcupine – a unique and powerful film about a country that refuses to lie down, a people who turned themselves into a fortress of needles when Russian tanks rolled in. The Steel Porcupine is an unforgettable cinematic experience that exposes Russia's campaign of extermination in Ukraine, and the Ukrainian people's spirit to resist and prevail. It follows soldiers, volunteers and people who decided that survival meant resistance, not submission.Created by the makers of the acclaimed To the Zero Line, this is another film about humanity, that clearly states there is no such thing as neutrality when war crimes are being committed systematically by Russia, and on a scale in Europe only comparable to World War Two. Set to a haunting soundtrack featuring music by Philip Glass, and blending rare archival footage with original material, it is an impactful work of art and storytelling, as well as being informative.----------SUPPORT THE CHANNEL:https://www.buymeacoffee.com/siliconcurtainhttps://www.patreon.com/siliconcurtain----------TRUSTED CHARITIES ON THE GROUND:Save Ukrainehttps://www.saveukraineua.org/Superhumans - Hospital for war traumashttps://superhumans.com/en/UNBROKEN - Treatment. Prosthesis. Rehabilitation for Ukrainians in Ukrainehttps://unbroken.org.ua/Come Back Alivehttps://savelife.in.ua/en/Chefs For Ukraine - World Central Kitchenhttps://wck.org/relief/activation-chefs-for-ukraineUNITED24 - An initiative of President Zelenskyyhttps://u24.gov.ua/Serhiy Prytula Charity Foundationhttps://prytulafoundation.orgNGO “Herojam Slava”https://heroiamslava.org/kharpp - Reconstruction project supporting communities in Kharkiv and Przemyślhttps://kharpp.com/NOR DOG Animal Rescuehttps://www.nor-dog.org/home/----------

In this conversation, Chris Thomas discusses the importance of family roles, particularly focusing on the roles of fathers, grandfathers, uncles, and brothers. He emphasizes that the family functions as a government, where each member has a specific role that contributes to the overall strength and unity of the family. The discussion includes biblical references and practical insights on how to restore and uphold these roles to create a strong family structure and community.TakeawaysEmpowerment is essential for family dynamics.Fathers play a crucial role in establishing identity and values.The family should be viewed as a governing body.Grandfathers preserve family history and wisdom.Uncles serve as protectors and mentors within the family.Brothers are co-builders and defenders of family unity.Restoration of family roles is necessary for generational strength.Teaching children is a primary responsibility of fathers.Covenant and culture are established through family roles.Identifying missing roles in the family is crucial for healing.Join the Tempo Communityhttps://www.facebook.com/groups/pacesetnetwork/?ref=share_group_linkChapters00:00 Empowerment and Family Roles06:21 The Importance of Fathers10:08 Family as a Government18:13 The Role of a Father34:15 The Role of Grandfathers41:04 The Role of Uncles54:22 The Role of Brothers01:01:32 Restoration of Family Roles

This Day in Legal History: Bernhard GoetzOn this day in legal history, December 22, 1984, Bernhard Goetz shot and wounded four young Black men—Troy Canty, Barry Allen, Darrell Cabey, and James Ramseur—on a New York City subway train. Goetz, who was white, claimed the men had attempted to rob him and that he acted in self-defense. The case quickly became a national sensation, exposing deep racial fault lines in public discourse and in the justice system. Supporters hailed Goetz as a vigilante hero responding to unchecked urban crime, while critics denounced his actions as racially motivated violence that reinforced systemic bias.Goetz fled the scene but turned himself in nine days later. During the investigation, he told police that he had intended to kill the men and expressed explicitly racist sentiments, calling them “savages.” Despite this, a grand jury initially refused to indict him for attempted murder, charging him only with criminal possession of a weapon. After public outcry, a second grand jury indicted him on multiple counts, including attempted murder and assault. In his 1987 trial, however, Goetz was acquitted of all charges except for illegal firearms possession.The verdict underscored how race and fear influenced perceptions of self-defense and victimhood. The jury accepted Goetz's narrative of fear despite his own admission of intent and inflammatory language. The case highlighted the elasticity of self-defense laws, especially when invoked by white defendants against Black victims. It also foreshadowed later debates in high-profile cases where racial bias intersected with claims of justified force. Goetz ultimately served just over eight months in jail. Darrell Cabey, left paralyzed by the shooting, later won a $43 million civil judgment against him—a sum Goetz claimed he could never pay. The case remains a stark example of how legal standards of justification can mask broader social inequities.President Trump is preparing to expand immigration enforcement in 2026 with a significant boost in funding and more aggressive tactics, including a renewed focus on workplace raids. Despite growing political backlash, Trump plans to hire thousands of new agents, expand detention centers, and partner with private companies to track undocumented immigrants. His administration has already deployed federal agents to major cities, sparking protests over the use of tear gas, extrajudicial tactics, and the detention of U.S. citizens.ICE and Border Patrol are set to receive $170 billion through 2029, a massive increase over their current annual budgets. Miami recently elected its first Democratic mayor in decades, with voters citing Trump's immigration policies as a motivating factor. While Trump continues to frame his crackdown as targeting criminals, government data shows a large portion of recent ICE arrests have involved individuals with no criminal record beyond immigration violations.Trump has also moved to strip temporary protections from hundreds of thousands of immigrants and aims to deport one million people annually, although he's likely to fall short of that target. Legal immigrants haven't been spared either—some have been detained during green card interviews or had their naturalization ceremonies interrupted. The administration's new workplace-focused approach could strain the economy, especially in industries reliant on immigrant labor, raising concerns about inflation and employer backlash.Critics argue the crackdown undermines due process and civil liberties, militarizes communities, and disproportionately targets people of color. As enforcement expands, business groups may be forced to respond more vocally, especially if employer raids disrupt operations. Trump's overall approval on immigration has dropped sharply since March, suggesting growing public discomfort with the scope and style of enforcement.Trump set to expand immigration crackdown in 2026 despite brewing backlash | ReutersA federal judge has blocked the Trump administration from implementing new restrictions on over $3 billion in federal grants that support housing and services for homeless individuals. U.S. District Judge Mary McElroy issued a preliminary injunction after finding that the Department of Housing and Urban Development's (HUD) planned changes to the Continuum of Care program likely violated the McKinney-Vento Act, which mandates a focus on stable, permanent housing for vulnerable populations.The lawsuit was brought by 20 mostly Democratic-led states, Washington, D.C., and a coalition of nonprofits and local governments. Plaintiffs argued that HUD's proposed changes would endanger the housing of around 170,000 people, including families, veterans, and survivors of domestic violence—particularly concerning as winter sets in. McElroy, a Trump appointee, emphasized the public interest in upholding lawful agency action and maintaining stability for at-risk groups.The Trump administration had sought to move away from the long-standing “housing-first” model, which provides housing without preconditions like sobriety or employment, and instead proposed work requirements and transitional housing. HUD also attempted to ban funding for services related to diversity, gender identity, and abortion, while aligning programs with its immigration enforcement efforts.Critics viewed the move as a politically motivated attempt to reshape federal homelessness policy, while the judge noted HUD's last-minute changes to its own policy appeared strategic and disruptive to legal proceedings. Despite the ruling, HUD stated it remains committed to reforming the program “in accordance with the law.”US judge blocks Trump administration from altering homelessness funding conditions | ReutersDavid O'Keefe, a retired Manhattan prosecutor, has filed a federal lawsuit against New York City and Brookfield Properties, claiming he was unlawfully arrested while protesting outside the Manhattan offices of the law firm Skadden Arps. The protest took place in April 2025 in a privately owned public space (POPS), where O'Keefe staged a solo demonstration criticizing Skadden's agreement to provide $100 million in pro bono legal services for initiatives backed by President Donald Trump. He alleged the firm's involvement threatened the rule of law.According to the complaint, O'Keefe was arrested for trespassing after refusing to leave the plaza, detained for 90 minutes, and later had the charge dismissed. His lawsuit seeks not only damages but also a court ruling affirming that First Amendment rights apply in POPS—publicly accessible spaces maintained by private owners in exchange for zoning benefits. His legal team argues the arrest violated his constitutional rights and aims to clarify protections for protest in such hybrid public-private areas.Skadden is not named as a defendant and has not commented. The firm was one of several major law firms that agreed to work with the Trump administration following the president's efforts to pressure the legal industry over prior political affiliations and diversity practices. A photo included in the suit shows O'Keefe holding a sign labeling Skadden “Trump's $100 million lap dog.”Ex-prosecutor sues over arrest while protesting law firm Skadden's deal with Trump | Reuters This is a public episode. If you'd like to discuss this with other subscribers or get access to bonus episodes, visit www.minimumcomp.com/subscribe

SUPPORT THIS PODCAST!Join PatreonGet some merch~~~~FEATURED SONGNICK – “My Xmas Wish” (from the upcoming album, VALLEY OF THE UNRELEASED) In the sixth installment of Quick Takes from the Continuum, I wrap up my 2025 playlist, and the year itself.I'll sum up where my playlist was midyear, then fill it out with everything I've added since then. I'll also weigh in on my favorites for the year, and the overall quality of music in 2025.And since it's the holiday season, I'll also catch up on my Christmas playlist, and assess the overall quality of 2025's Christmas additions. 2025alive PLAYLISTChristmas PLAYLISTWhat's your take on the music from this year? Any favorites? Any old music you discovered for the first time? What about holiday music? And how do you feel next year's music will be? Discuss dammit!~~~~*intro music credit: REC - "You Make Me Wanna" (from RECcollection: The Best of REC 2007-2020) Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.

In the hospital setting, neurologists may be responsible for managing common end-of-life symptoms. Comprehensive end-of-life care integrates knowledge of the biomedical aspects of disease with patients' values and preferences for care; psychosocial, cultural, and spiritual needs; and support for patients and their families. In this episode, Teshamae Monteith, MD, FAAN, speaks with Claudia Z. Chou, MD, author of the article "End-of-Life Care and Hospice" in the Continuum® December 2025 Neuropalliative Care issue. Dr. Monteith is the associate editor of Continuum® Audio and an associate professor of clinical neurology at the University of Miami Miller School of Medicine in Miami, Florida. Dr. Knox is an assistant professor of neurology and a consultant in the Division of Community Internal Medicine, Geriatrics and Palliative Care at Mayo Clinic in Rochester, Minnesota. Additional Resources Read the article: End-of-Life Care and Hospice Subscribe to Continuum®: shop.lww.com/Continuum Earn CME (available only to AAN members): continpub.com/AudioCME Continuum® Aloud (verbatim audio-book style recordings of articles available only to Continuum® subscribers): continpub.com/Aloud More about the American Academy of Neurology: aan.com Social Media facebook.com/continuumcme @ContinuumAAN Host: @headacheMD Full episode transcript available here Dr Jones: This is Dr Lyell Jones, Editor-in-Chief of Continuum. Thank you for listening to Continuum Audio. Be sure to visit the links in the episode notes for information about earning CME, subscribing to the journal, and exclusive access to interviews not featured on the podcast. Dr Monteith: This is Dr Teshamae Monteith. Today I'm interviewing Dr Claudia Chou about her article on end-of-life care and hospice, which is found in the December 2025 Continuum issue on neuropalliative care. Welcome to our podcast. How are you? Dr Chou: I'm doing well. Thank you for having me. This is really exciting to be here. Dr Monteith: Absolutely. So, why don't you introduce yourself to our audience? Dr Chou: Sure. My name is Claudia Chou. I am a full time hospice and palliative medicine physician at Mayo Clinic in Rochester. I'm trained in neurology, movement disorders, and hospice and palliative medicine. I'm also passionate about education, and I'm the program director for the Hospice and Palliative Medicine fellowship here. Dr Monteith: Cool. So just learning about your training, I kind of have an idea of how you got into this work, but why don't you tell me what inspired you to get into this area? Dr Chou: It was chance, actually. And really just good luck, being in the right place at the right time. I was in my residency and felt like I was missing something in my training. I was seeing these patients who were suffering strokes and had acute decline in functional status. We were seeing patients with new diagnosis of glioblastoma and knowing what that future looked like for them. And while I went into neurology because of a love of neuroscience, localizing the lesion, all of those things that we all love about neurology, I still felt like I didn't have the skill set to serve patients where they perhaps needed me the most in those difficult times where they were dealing with serious illness and functional decline. And so, the serendipitous thing was that I saw a grand rounds presentation by someone who works in neurology and palliative care for people with Parkinson's disease. And truly, it's not an exaggeration to say that by the end of that lecture, I said, I need to do palliative care, I need to rotate in this, I need to learn more. I think this is what I've been missing. And I had plans to practice both movement disorders neurology and palliative care, but I finished training in 2020… and that was not a long time ago. We can think of all the things that were going on, all the different global forces that were influencing our day-to-day decisions. And the way things worked out, staying in palliative care was really what my family and I needed. Dr Monteith: Wow, so that's really interesting. Must have been a great lecturer. Dr Chou: Yes, like one of the best.  Dr Monteith: So why don't you tell me about the objectives of your article? Dr Chou: The objectives may be to fill in some of the gaps in knowledge that may be present for the general neurologist. We learn so much in neurology training, so much about how to diagnose and treat diseases, and I think I would argue that this really is part and parcel of all we should be doing. We are the experts in these diseases, and just because we're shifting to end-of-life or transitioning to a different type of care doesn't mean that we back out of someone's care entirely or transition over to a hospice or palliative care expert. It is part of our job to be there and guide patients and their care partners through this next phase. You know, I'm not saying we all need to be hospice and palliative care experts, but we need to be able to take those first steps with patients and their care partners. And so, I think objectives are really to focus in on, what are those core pieces of knowledge for end-of-life care and understanding hospice so we can take those first steps with patients and their care partners? Dr Monteith: So, why don't you give us some of those essential points in your article? Dr Chou: Yeah. In one section of the article, I talk about common symptoms that someone might experience at the end of life and how we might manage those. These days, a lot of hospitals have order sets that talk us through those symptoms. We can check things off of a drop-down menu. And yet I think there's a little bit more nuance to that. There may be situations in which we would choose one medication over another. There may be medications that we've never really thought of in terms of symptom management before. Something that I learned in my hospice and palliative medicine fellowship was that haloperidol can be helpful for nausea. I know that's usually not one of our go-tos in neurology for any number of reasons. So, I think that extra knowledge can take us pretty far when we're managing end of life symptoms, particularly in the hospital setting. And then I think the other component is the hospice component. A lot of us may have not had experience talking about hospice, talking about what hospice can provide, and again, knowing how to take those first steps with patients. We may be referring to social work or palliative medicine to start those conversations. But again, I think this is something that's definitely learnable and something that should be part of our skill set in neurology. Dr Monteith: Great. And so, when you speak about symptom management and being more comfortable with the tools that we have, how can we be more efficient and more effective at that? Dr Chou: Think about what the common symptoms are at end of life. We may know this kind of intuitively, but what we commonly see are things like pain, nausea, dyspnea, anxiety, delirium or agitation. And so, I think having a little bit of a checklist in mind can be helpful. You know, how can I systematically think through a differential, almost, for why my patient might be uncomfortable? Why they might be restless? Have I thought through these different symptoms? Can I try a medication from my tool kit? See if that works, and if it does, we can continue on. If not, what's the next thing that I can pivot to? So, I think these are common skills for a little bit of a differential diagnosis, if you will, and how to work through these problems just with the end-of-life lens on it. Dr Monteith: So, are there any, like, validated tools or checklists that are freely available? Dr Chou: I don't think there's been anything particularly validated for end-of-life care in neurologic disease. And so, a lot of our treatments and our approaches are empiric, but I don't think there's been anything validated, per se. Dr Monteith: Great. So, why don't we talk a little bit about the approach to discussions on hospice? We all, as you kind of alluded to, want to be effective neurologists, care for our patients, but we sometimes deal with very debilitating diseases. And so, when we think that or suspect that our patient is kind of terminally ill, how do we approach that to our patients? Of course, our patients come from different backgrounds, different experiences. So, what is your approach? Dr Chou: So, when we talk about hospice and when a patient may be appropriate for hospice, we have to acknowledge that we think that they may be in the last six months of their disease. We as the neurologist are the experts in their disease and the best ones to weigh in on that prognosis. The patient and their care partners then have to accept that the type of care that hospice provides is what makes sense for them. Hospice focuses on comfort and treating a patient's comfort as the primary goal. Hospice is not as interested in treating cancer, say, to prolong life. Hospice is not as interested in life-prolonging measures and treatments that are not focused at comfort and quality of life. And so, when we have that alignment between our understanding of a patient's disease and their prognosis and the patient care partner's goal is to focus on comfort and quality of life above all else, that's when we have a patient who might be appropriate for hospice and ready to hear more about what that actually entails. Dr Monteith: And what are some, maybe, myths that neurologist healthcare professionals may have about hospice that you really want us to kind of have some clarity on? Dr Chou: That's a great question. What we often tell patients is that hospice's goal is to help patients live as well as possible in the time that they have left. Again, our primary objective is not life prolongation, but quality of life. Hospice's goal is also not to speed up or slow down the natural dying process. Sometimes we do get questions about that: can't you make this go faster or we're ready for the end. But really, we are there to help patients along the natural journey that their body is taking them on. And I think hospice care can actually be complex. In the inpatient setting, in particular in neurology, we may be seeing patients who have suffered large strokes and have perhaps only days to a few weeks of life left. But in the outpatient setting and in the home hospice setting, patients can be on hospice for many months, and so they will have new care needs, new urinary tract infections, sometimes new rashes, the need to change their insulin regimens around to avoid extremes of hyperglycemia or hypoglycemia. So, there is a lot of complexity in that care and a lot that can be wrapped up under that quality-of-life and comfort umbrella. Dr Monteith: And to get someone to hospice requires a bit of prognostication, right? Six months of prediction in terms of a terminal illness. I know there's some nuances to that. So how can you make us feel more comfortable about making the recommendations for hospice? Dr Chou: I think this is a big challenge in the field. We're normally guided by Medicare guidelines that say when a patient might be hospice-appropriate. And so, for a neurologic disease, this really only encompasses four conditions: ALS, stroke, coma, and Alzheimer's dementia. And we can think of all the other diseases that are not encompassed in those four. And so, I think we say that we paint the picture of what it means to have a prognosis of six months or less. So, from the neurologic side, that can be, what do you know about this disease and what end-stage might look like? What is the pattern of the patient's functional decline? What are they needing more help with? Are there other factors at play such as heart failure or COPD that may in and of themselves not be a qualifying diagnosis for hospice, but when it's taken together in the whole clinical picture, you have a patient who's very ill and one that you're worried may die in the next six months or less? Dr Monteith: Then you also had some nice charts on kind of disease-specific guidelines. Can you take us a little bit through that? Dr Chou: The article does contain tables about specific criteria that may qualify someone for hospice with these neurologic conditions. And they are pretty dense. I know they're a checklist of a lot of different things. And so, how we practice is by trying to refer patients to hospice based on those guidelines as much as possible and then using our own clinical judgment as well, what we have seen through taking care of patients through the years. So, again, really going back to that decline. What is making you feel uncomfortable about this patient's prognosis? What is making you feel like, gosh, this patient could be well supported by hospice, and they could have six months or less? So, all of that should go into your decision as well. And all of that should go into your discussion with the patient and their care partners. Dr Monteith: Yeah. And reading your article, what stood out was all the services that patients can receive under hospice. So, I think sometimes people think, okay, this is terminal illness, let's get to hospice for whatever reasons, but not necessarily all the lists and lists and lists of benefits of hospice. So, I don't know that everyone's aware of all those benefits. So, can you talk to us a little bit about that? Dr Chou: Yeah, I like that you brought that up because that's also something that I often say to patients and their care partners when we're talking about hospice. When the time is right for a patient to enroll in hospice, they should not feel like they're giving anything up. There should be no more clinical trial that they're hoping to chase down, and so they should just feel like they're gaining all of those good supports: care that comes to their home, a team that knows them well, someone that's available twenty-four hours a day by phone and can actually even come into the home setting if needed to help with symptom management. Hospice comes as well with the psychosocial supports for just coping with what dying looks like. We know that's not easy to be thinking about dying for oneself, or for a family member or care partner to be losing their loved one. So, all of those supports are built into hospice. I did want to make a distinction, too, that hospice does not provide custodial care, which I explain to patients as care of the body, those daily needs for bathing, dressing, eating, etc. Sometimes patients are interested in hospice because they're needing more help at home, and I have to tell them that unfortunately, our healthcare system is not built for that. And if that's the sole reason that someone is interested in hospice, we have to think about a different approach, because that is not part of the hospice benefit.  Dr Monteith: Thank you for that. And then I learned about concurrent care. So why don't you tell us a little bit about that? That's a little bit of a nuance, right? Dr Chou: Yeah, that is a little bit of a nuance. And so, typically when patients are enrolling in hospice, they are transitioning from care the way that it's normally conducted in our healthcare system. So, outpatient visits to all of the specialists and to their primary care providers, the chance to go to the ER or the ICU for higher levels of care. And yet there are a subset of patients who can still have all of those cares alongside hospice care. That really applies to two specific populations: veterans who are receiving care through the Veterans Administration, and then younger patients, so twenty six years old and less, can receive that care through, essentially, a pediatric carve out. Dr Monteith: Great. Well, I mean, you gave so much information in your article, so our listeners are going to have to read it. I don't want you to spill everything, but if you can just kind of give me a sense what you want a neurologist to take away from your article, I think that would be helpful. Dr Chou: I think what I want neurologist to take away is that, again, this is something that is part of what we do as neurologists. This is part of our skill set, and this is part of what it means to take good care of patients. I think what we do in this transition period from kind of usual cares, diagnosis, full treatment to end of life, really can have impact on patients and their care partners. It's not uncommon for me to hear from family members who have had another loved one go through hospice about how that experience was positive or negative. And so, we can think about the influence for years to come, even, because of how well we can handle these transitions. That really can be more than the patient in front of us in their journey. That is really important, but it can also have wide-reaching implications beyond that. Dr Monteith: Excellent. And I know we were talking earlier a little bit about your excitement with the field and where it's going. So why don't you share some of that excitement? Dr Chou: Yeah. And so, I think there is a lot still to come in the field of neuropalliative care, particularly from an evidence base. I know we talked a lot about the soft skills, about presence and communication, but we are clinicians at heart, and we need to practice from an evidence base. I know that's been harder in palliative care, but we have some international work groups that really are trying to come together, see what our approaches look like, see where standardization may need to happen or where our differences are actually our strength. I think there can be a lot of variability in what palliative care looks like. So, my hope is that evidence base is coming through these collaborations. I know it's hard to have a conversation these days without talking about artificial intelligence, but that is certainly a hope. When you look at morbidity, when you look at patients with these complicated disease courses, what is pointing you in the direction of, again, a prognosis of six months or less or a patient who may do better with this disease versus not? And so, I think there's a lot to come from the artificial intelligence and big data realm. For the trainees listening out there, there is no better time to be excited about neuropalliative care and to be thinking about neuropalliative care. I said that I stumbled upon this field, and hopefully someone is inspired as well by listening to these podcasts and reading Continuum to know what this field is really about. And so, it's been exponential growth since I joined this field. We have medical students now who want to come into neuropalliative care as a profession. We have clinicians who are directors of neuropalliative care at their institutions. We have an international neuropalliative care society and neuropalliative care at AAN. And I think we are moving closer to that dream for all of us, which is that patients living with serious neurologic illness can be supported throughout that journey. High-quality, evidence-based palliative care. We're not there yet, but I think it is a possibility that we reach that in my lifetime. Dr Monteith: Well, excellent. I look forward to maybe another revision of this article with some of that work incorporated. And it's been wonderful to talk to you and to reflect on how better to approach patients that are towards the end of life and to help them with that decision-making process. Thank you so much.  Dr Chou: Yeah, thank you for having me. And we're very excited about this issue. Dr Monteith: Today. I've been interviewing Dr Claudia Chou about her article on end-of-life care and hospice, which is found in the December 2025 Continuum issue on neuropalliative care. Be sure to check out Continuum Audio episodes from this and other issues, and thank you to our listeners for joining today. Dr Monteith: This is Dr Teshamae Monteith, Associate Editor of Continuum Audio. If you've enjoyed this episode, you'll love the journal, which is full of in-depth and clinically relevant information important for neurology practitioners. Use the link in the episode notes to learn more and subscribe. AAN members, you can get CME for listening to this interview by completing the evaluation at continpub.com/audioCME. Thank you for listening to Continuum Audio.

Dec. 16, 2025 - Medical respite care is being pushed as a cheaper alternative than prolonged hospital stays for New Yorkers without a place to recuperate. We discuss how an expansion of this service might happen in New York with Jody Rudin, president and CEO of the Institute for Community Living.

   “It's not enough to build a system and then exit stage left when you realize it's broken. The ‘I'm sorry' is not the work — it's only the acknowledgment that work needs to be done. After the apology, you must actually do the repair. And what I see from her is the language of accountability without the actions that would demonstrate it. That's insufficient for real change.” Danielle (01:03):Well, I mean, what's not going on? Just, I don't know. I think the government feels more and more extreme. So that's one thing I feel people are like, why is your practice so busy? I'm like, have you seen the government? It's traumatizing all my clients. Hey Jeremy. Hey Jenny.Jenny (01:33):I'm in Charlottesville, Virginia. So close to Rebecca. We're going to soon.Rebecca (01:48):Yeah, she is. Yeah, she is. And before you pull up in my driveway, I need you to doorbell dish everybody with the Trump flag and then you can come. I'm so readyThat's a good question. That's a good question. I think that, I don't know that I know anybody that's ready to just say out loud. I am not a Trump supporter anymore, but I do know there's a lot of dissonance with individual policies or practices that impact somebody specifically. There's a lot of conversation about either he doesn't know what he's doing or somebody in his cabinet is incompetent in their job and their incompetency is making other people's lives harder and more difficult. Yeah, I think there's a lot of that.(03:08):Would she had my attention for about two minutes in the space where she was saying, okay, I need to rethink some of this. But then as soon as she says she was quitting Congress, I have a problem with that because you are part of the reason why we have the infrastructure that we have. You help build it and it isn't enough to me for you to build it and then say there's something wrong with it and then exit the building. You're not equally responsible for dismantling what you helped to put in place. So after that I was like, yeah, I don't know that there's any authenticity to your current set of objections,I'm not a fan of particularly when you are a person that in your public platform built something that is problematic and then you figure out that it's problematic and then you just leave. That's not sufficient for me, for you to just put on Twitter or Facebook. Oh yeah, sorry. That was a mistake. And then exit stage leftJenny (04:25):And I watched just a portion of an interview she was on recently and she was essentially called in to accountability and you are part of creating this. And she immediately lashed out at the interviewer and was like, you do this too. You're accusing me. And just went straight into defensive white lady mode and I'm just like, oh, you haven't actually learned anything from this. You're just trying to optically still look pure. That's what it seems like to me that she's wanting to do without actually admitting she has been. And she is complicit in the system that she was a really powerful force in building.Rebecca (05:12):Yeah, it reminds me of, remember that story, excuse me, a few years ago about that black guy that was birdwatching in Central Park and this white woman called the cops on him. And I watched a political analyst do some analysis of that whole engagement. And one of the things that he said, and I hate, I don't know the person name, whoever you are, if you said this and you hear this, I'm giving you credit for having said it, but one of the things that he was talking about is nobody wants you to actually give away your privilege. You actually couldn't if you tried. What I want you to do is learn how to leverage the privilege that you have for something that is good. And I think that example of that bird watching thing was like you could see, if you see the clip, you can see this woman, think about the fact that she has power in this moment and think about what she's going to do with that power.(06:20):And so she picks up her phone and calls the cops, and she's standing in front of this black guy lying, saying like, I'm in fear for my life. And as if they're doing anything except standing several feet apart, he is not yelling at you. He hasn't taken a step towards you, he doesn't have a weapon, any of that. And so you can see her figure out what her privilege looks like and feels like and sounds like in that moment. And you can see her use it to her own advantage. And so I've never forgotten that analysis of we're not trying to take that from you. We couldn't if we tried, we're not asking you to surrender it because you, if you tried, if you are in a place of privilege in a system, you can't actually give it up because you're not the person that granted it to yourself. The system gave it to you. We just want you to learn how to leverage it. So I would love to see Marjorie Taylor Greene actually leverage the platform that she has to do something good with it. And just exiting stays left is not helpful.Danielle (07:33):And to that point, even at that though, I've been struck by even she seems to have more, there's on the continuum of moral awareness, she seems to have inch her way in one direction, but I'm always flabbergasted by people close to me that can't even get there. They can't even move a millimeter. To me, it's wild.Well, I think about it. If I become aware of a certain part of my ignorance and I realize that in my ignorance I've been harming someone or something, I believe we all function on some kind of continuum. It's not that I don't think we all wake up and know right and wrong all the time. I think there's a lot of nuance to the wrongs we do to people, honestly. And some things feel really obvious to me, and I've observed that they don't feel obvious to other people. And if you're in any kind of human relationship, sometimes what you feel is someone feels as obvious to them, you're stepping all over them.(08:59):And I'm not talking about just hurting someone's feelings. I'm talking about, yeah, maybe you hurt their feelings, but maybe you violated them in that ignorance or I am talking about violations. So it seems to me that when Marjorie Taylor Green got on CN and said, I've been a part of this system kind of like Rebecca you're talking about. And I realized that ignoring chomp hyping up this rhetoric, it gets people out there that I can't see highly activated. And there's a group of those people that want to go to concrete action and inflict physical pain based on what's being said on another human being. And we see that, right? So whatever you got Charlie Kirk's murderer, you got assassination of Dr. Martin Luther King all throughout history we've seen these, the rhetoric and the violence turns into these physical actions. And so it seems to me like she had some awareness of what her contributing to that, along with the good old orange guy was doing contributes to violence. It seems to me like she inched in that direction.Rebecca (10:27):Yeah, like I said, I think you're right in that inching, she had my attention. And so then I'm waiting for her to actually do something substantive more than just the acknowledgement that I have been in error. And and I think part of that is that I think we have a way of thinking that the acknowledgement or the, I'm sorry, is the work, and it is not the, I'm sorry, is the acknowledgement that work needs to be done. So after you say, I'm sorry, now let's go do the work.Danielle (11:10):I mean our own therapeutic thing that we all went through that we have in common didn't have a concept for repair. So people are coming to therapy looking for a way to understand. And what I like to say is there's a theory of something, but there's no practical application of it that makes your theory useless in some sense to me or your theology, even if your ology has a theology of X, Y, Z, but you can't actually apply that. What is the use of it?Jenny (11:43):And I think that's best case scenario, and I think I'm a more cynical person than you are Danielle, but I see what's happening with Taylor Green and I'm like, this actually feels like when a very toxic, dangerous man goes to therapy and learns the therapy language and then is like it's my boundaries that you can't wear that dress. And it's like, no, no, that's not what we're doing. It's just it's my boundary that when there isn't that actual sense of, okay, I'm going to be a part of the work, to me it actually somehow feels potentially more dangerous because it's like I'm using the language and the optics of what will keep me innocent right now without actually putting any skin in the game.(12:51):Yeah, I would say it's an enactment of white womanhood. I would say it's intentional, but probably not fully conscious that it is her body moving in the way that she's been racially and gendered(13:07):Tradition to move. That goes in some ways maybe I can see that I've enacted harm, but I'm actually going to replicate the same thing in stepping into now a new position of performing white womanhood and saying the right things and doing the right things. But then the second an interviewee calls me out into accountability, I'm going to go into potentially white psychosis moment because I don't actually know how to metabolize the ways in which I am still complicit in the system. And to me, I think that's the impossibility of how do we work through the ways that these systems live in our bodies that isn't clean. It isn't pure, but I think the simplicity of I was blind now I see. I am very skeptical of,Rebecca (14:03):Yeah, I think it's interesting the notion that, and I'm going to misquote you so then you fix it. But something of like, I don't actually know how to metabolize these things and work them through. I only know this kind of performative space where I say what I'm expected to say.Jenny (14:33):Yeah, I think I see it as a both, and I don't totally disagree with the fact of there's not something you can do to get rid of your privilege. And I do think that we have examples of, oh goodness, I wish I could remember her name. Viola Davis. No, she was a white woman who drove, I was just at the African-American History Museum yesterday and was reminded of her face, but it's like Viola ela, I want to say she's a white woman from Detroit who drove down to the south during the bus boycotts to carpool black folks, and she was shot in the head and killed in her car because she stepped out of the bounds of performing white womanhood. And I do think that white bodies know at a certain level we can maintain our privilege and there is a real threat and a real cost to actually doing what needs to be done to not that we totally can abdicate our privilege. I think it is there, and I do think there are ways of stepping out of the bondage of our racial and gendered positions that then come with a very real threat.Rebecca (16:03):Yes. But I think I would say that this person that you're referring to, and again, I feel some kind of way about the fact that we can't name her name accurately. And there's probably something to that, right? She's not the only one. She's not the first one. She's not the last one who stepped outside of the bounds of what was expected of her on behalf of the Civil Rights Movement, on behalf of justice. And those are stories that we don't know and faces and names we cannot, that don't roll off the tip of our tongue like a Rosa Parks or a Medgar Evers or a Merley Evers or whoever. So that being said, I would say that her driving down to the South, that she had a car that she could drive, that she had the resources to do that is a leveraging of some of her privilege in a very real way, a very substantive way. And so I do think that I hear what you're saying that she gave up something of her privilege to do that, and she did so with a threat that for her was realizing a very violent way. And I would also say she leveraged what privilege she had in a way that for her felt like I want to offer something of the privilege that I have and the power that I have on behalf of someone who doesn't have it.(17:44):It kind of reminds me this question of is the apology enough or is the acknowledgement enough? It reminds me of what we did in the eighties and nineties around the racial reconciliation movement and the Promise Keepers thing and all those big conferences where the notion that the work of reconciliation was to stand on the stage and say, I realize I'm white and you're black, and I'm sorry. And we really thought that that was the work and that was sufficient to clear everything that needed to be cleared, and that was enough to allow people to move forward in proximity and connection to each other. And I think some of what we're living through 40, 45 years later is because that was not enough.(18:53):It barely scratched the surface to the extent that you can say that Donald Trump is not the problem. He is a symptom of the problem. To the extent that you could say that his success is about him stoking the fires that lie just beneath the surface in the realization that what happened with reconciliation in the nineties was not actually repair, it was not actually reconciliation. It was, I think what you're saying, Jenny, the sort of performative space where I'm speaking the language of repair and reconciliation, but I haven't actually done the work or paid the cost that is there in order to be reconciled.Danielle (19:40):That's in my line though. That's the continuum of moral awareness. You arrive to a spot, you address it to a certain point. And in that realm of awareness, what we've been told we can manage to think about, which is also goes back to Jenny's point of what the system has said. It's almost like under our system we have to push the system. It's so slow. And as we push the system out and we gain more awareness, then I think we realize we're not okay. I mean, clearly Latinos are not okay. They're a freaking mess. I think Mother Fers, half of us voted for Trump. The men, the women are pissed. You have some people that are like, you have to stay quiet right now, go hide. Other people are like, you got to be in the streets. It's a clear mess. But I don't necessarily think that's bad because we need to have, as a large group of people, a push of our own moral awareness.(20:52):What did we do that hurt ourselves? What were we willing to put up with to recolonize ourselves to agree to it, to agree to the fact that you could recolonize yourself. So I mean, just as a people group, if you can lump us all in together, and then the fact that he's going after countries of origin, destabilizing Honduras telling Mexico to release water, there is no water to release into Texas and California. There isn't the water to do it, but he can rant and rave or flying drones over Venezuela or shooting down all these ships. How far have we allowed ourselves in the system you're describing Rebecca, to actually say our moral awareness was actually very low. I would say that for my people group, very, very low, at least my experience in the states,Rebecca (21:53):I think, and this is a working theory of mine, I think like what you're talking about, Danielle, specifically in Latino cultures, my question has been when I look at that, what I see as someone who's not part of Latino culture is that the invitation from whiteness to Latino cultures is to be complicit in their own erasure in order to have access to America. So you have to voluntarily drop your language, drop your accent, change your name, whatever that long list is. And I think when whiteness shows up in a culture in that way where the request or the demand is that you join in your own eraser, I think it leads to a certain kind of moral ignorance, if you will.(23:10):And I say that as somebody coming from a black American experience where I think the demand from whiteness was actually different. We weren't actually asked to participate in our own eraser. We were simply told that there's no version of your existence where you will have access to what whiteness offers to the extent that a drop is a drop is a drop. And by that I mean you could be one 16th black and be enslaved in the United States, whereas, so I think I have lots of questions and curiosities around that, about how whiteness shows up in a particular culture, what does it demand or require, and then what's the trajectory that it puts that culture on? And I'm not suggesting that we don't have ways of self-sabotage in black America. Of course we do. I just think our ways of self-sabotage are nuanced or different from what you're talking about because the way that whiteness has showed up in our culture has required something different of us. And so our sabotage shows up in a different way.(24:40):To me. I don't know. I still don't know what to do with the 20% of black men that voted for Trump. I haven't figured that one out yet. Perhaps I don't have enough moral awareness about that space. But when I look at what happened in Latino culture, at least my theory as someone from the outside looking in is like there's always been this demand or this temptation that you buy the narrative that if you assimilate, then you can have access to power. And so I get it. It's not that far of a leap from that to course I'll vote for you because if I vote for you, then you'll take care of us. You'll be good and kind and generous to me and mine. I get that that's not the deal that was made with black Americans. And so we do something different. Yeah, I don't know. So I'm open to thoughts, rebuttals, rebukes,Jenny (25:54):My mind is going to someone I quote often, Rosa Luxembourg, who was a democratic socialist revolutionary who was assassinated over a hundred years ago, and she wrote a book called Reform or Revolution arguing that the more capitalism is a system built on collapse because every time the system collapse, those who are at the top get to sweep the monopoly board and collect more houses, more land, more people. And so her argument was actually against things like unions and reforms to capitalism because it would only prolong the collapse, which would make the collapse that much more devastating. And her argument was, we actually have to have a revolution because that's the only way we're going to be able to redo this system. And I think that for the folks that I knew that voted for Trump, in my opinion, against their own wellness and what it would bring, it was the sense of, well, hopefully he'll help the economy.(27:09):And it was this idea that he was just running on and telling people he was going to fix the economy. And that's a very real thing for a lot of people that are really struggling. And I think it's easier for us to imagine this paternalistic force that's going to come in and make capitalism better. And yet I think capitalism will only continue to get worse on purpose. If we look at literally yesterday we were at the Department of Environmental Protections and we saw that there was black bags over it and the building was empty. And the things that are happening to our country that the richest of the ridge don't care that people's water and food and land is going to be poisoned in exponential rates because they will not be affected. And until we can get, I think the mass amount of people that are disproportionately impacted to recognize this system will never work for us, I don't know. I don't know what it will take. I know we've used this word coalition. What will it take for us to have a coalition strong enough to actually bring about the type of revolution that would be necessary? IRebecca (28:33):Think it's in part in something that you said, Jenny, the premise that if this doesn't affect me, then I don't have any skin in this game and I don't really care. I think that is what will have to change. I think we have to come to a sense of if it is not well with the person sitting next to me, then it isn't well with me because as long as we have this mindset that if it doesn't directly affect me that it doesn't matter, then I think we're always sort of crabs in a barrel. And so maybe that's idealistic. Maybe that sounds a little pollyannaish, but I do think we have to come to this sense of, and this maybe goes along with what Danielle was saying about the continuum of moral awareness. Can I do the work of becoming aware of people whose existence and life is different than mine? And can that awareness come from this place of compassion and care for things that are harmful and hurtful and difficult and painful for them, even if it's not that way? For me, I think if we can get there with this sense of we rise and fall together, then maybe we have a shot at doing something better.(30:14):I think I just heard on the news the other day that I think it used to be a policy that on MLK Day, certain federal parks and things were free admission, and I think the president signed an executive order that's no longer true, but you could go free if you go on Trump's birthday. The invitation and the demand that is there to care only about yourself and be utterly dismissive of anyone and everyone else is sickening.Jenny (30:51):And it's one of the things that just makes me go insane around Christian nationalism and the rhetoric that people are living biblically just because they don't want gay marriage. But then we'll say literally, I'm just voting for my bank account, or I'm voting so that my taxes don't go to feed people. And I had someone say that to me and they're like, do you really want to vote for your taxes to feed people? I said, absolutely. I would much rather my tax money go to feed people than to go to bombs for other countries. I would do that any day. And as a Christian, should you not vote for the least of these, should you not vote for the people that are going to be most affected? And that dissonance that's there is so crazy making to me because it's really the antithesis of, I think the message of Jesus that's like whatever you do to the least of these, you are doing to me. And instead it's somehow flipped where it's like, I just need to get mine. And that's biblical,Rebecca (31:58):Which I think I agree wholeheartedly as somebody who identifies as a Christian who seeks to live my life as someone that follows the tenets of scripture. I think part of that problem is the introduction of this idea that there are hierarchies to sin or hierarchies to sort of biblical priorities. And so this notion that somehow the question of abortion or gay rights, transgendered rights is somehow more offensive to scripture than not taking care of the least of these, the notion that there's such a thing as a hierarchy there that would give me permission to value one over the other in a way that is completely dismissive of everything except the one or two things that I have deemed the most important is deeply problematic to me.Danielle (33:12):I think just coming back to this concept of I do think there was a sense among the larger community, especially among Latino men, Hispanic men, that range of people that there's high percentage join the military, high percentage have tried to engage in law enforcement and a sense of, well, that made me belong or that gave my family an inn. Or for instance, my grandfather served in World War II and the Korean War and the other side of my family, the German side, were conscientious objectors. They didn't want to fight the Nazis, but then this side worked so hard to assimilate lost language, didn't teach my mom's generation the language. And then we're reintroducing all of that in our generation. And what I noticed is there was a lot of buy-in of we got it, we made it, we made it. And so I think when homeboy was like, Hey, I'm going to do this. They're like, not to me,To me, not to me. It's not going to happen to me. I want my taxes lowered. And the thing is, it is happening to us now. It was always going to, and I think those of us that spoke out or there was a loss of the memory of the old school guys that were advocating for justice. There was a loss there, but I think it's come back with fury and a lot of communities and they're like, oh, crap, this is true. We're not in, you see the videos, people are screaming, I'm an American citizen. They're like, we don't care. Let me just break your arm. Let me run over your legs. Let me take, you're a US service member with a naval id. That's not real. Just pure absurdity is insane. And I think he said he was going to do it, he's doing it. And then a lot of people in our community were speaking out and saying, this is going to happen. And people were like, no, no, no, no, no. Well, guess what?Rebecca (35:37):Right? Which goes back to Martin Luther King's words about injustice anywhere is a threat to justice everywhere. The notion that if you're willing to take rights and opportunities and privileges from one, you are willing to take them from all. And so again, back to what Jenny said earlier, this notion that we rise our fall together, and as long as we have this mindset that I can get mine, and it doesn't matter if you don't get yours, there will always be a vulnerability there. And what you're saying is interesting to me, Danielle, talking about the military service in Latino communities or other whatever it is that we believed was the ticket in. And I don't think it's an accident or a coincidence that just around the time that black women are named the most educated and the fastest rising group for graduate and doctoral degrees, you see the dismantling of affirmative action by the Supreme Court.(36:49):You see now, the latest thing is that the Department of Education has come out and declassified a list of degrees as professional degrees. And overwhelmingly the degrees that are named on that list that are no longer considered professional are ones that are inhabited primarily by women and people of color. And I don't think that that is a coincidence, nor do I think it's a coincidence that in the mass firings of the federal government, 300,000 black women lost their jobs. And a lot of that is because in the nineties when we were graduated from college and getting our degrees, corporate America was not a welcome place for people of color, for black people, for black women. So we went into the government sector because that was the place where there was a bit more of a playing field that would allow you to succeed. And I don't think it is a coincidence that the dismantling intentionally of the on-ramps that we thought were there, that would give us a sense of belonging. Like you're in now, right? You have arrived, so to speak. And I am only naming the ones that I see from my vantage point. I hear you naming some things that you see from your vantage point, right? I'm sure, Jenny, you have thoughts about how those things have impacted white women.Jenny (38:20):Yeah, yeah. And I'm thinking about, we also went yesterday to the Native American Museum and I learned, I did not realize this, that there was something called, I want to say, the Pocahontas exception. And if a native person claimed up to one 14th of Pocahontas, DNA, they were then deemed white. What? And it just flabbergasted to me, and it was so evident just this, I was thinking about that when you were talking, Danielle, just like this moving target and this false promise of if you just do enough, if you just, you'll get two. But it's always a lie. It's always been a lie from literally the very first settlers in Jamestown. It has been a lie,Rebecca (39:27):Which is why it's sort of narcissistic and its sort of energy and movement, right? Because narcissism always moves the goalpost. It always changes the roles of the game to advantage the narcissist. And whiteness is good for that. This is where the goalpost is. You step up and meet it, and whiteness moves the goalpost.Danielle (40:00):I think it's funny that Texas redistricted based on how Latinos thought pre pre-migration crackdown, and they did it in Miami and Miami, Miami's democratic mayor won in a landslide just flipped. And I think they're like, oh, shit, what are we going to do? I think it's also interesting. I didn't realize that Steven Miller, who's the architect of this crap, did you know his wife is brownHell. That's creepy shit,Rebecca (40:41):Right? I mean headset. No, no. Vance is married to a brown woman. I'm sure in Trump's mind. Melania is from some Norwegian country, but she's an immigrant. She's not a US citizen. And the Supreme Court just granted cert on the birthright citizenship case, which means we're in trouble.(41:12):Well, I'm worried about everybody because once you start messing with that definition of citizenship, they can massage it any kind of way they want to. And so I don't think anybody's safe. I really don't. I think the low hanging fruit to speak, and I apologize for that language, is going to be people who are deemed undocumented, but they're not going to stop there. They're coming for everybody and anybody they can find any reason whatsoever to decide that you're not, if being born on US soil is not sufficient, then the sky's the limit. And just like they did at the turn of the century when they decided who was white and who wasn't and therefore who could vote and who could own property or who couldn't, we're going to watch the total and reimagining of who has access to power.Danielle (42:14):I just am worried because when you go back and you read stories about the Nazis or you read about genocide and other places in the world, you get inklings or World War I or even more ancient wars, you see these leads up in these telltale signs or you see a lead up to a complete ethnic cleansing, which is what it feels like we're gearing up for.I mean, and now with the requirement to come into the United States, even as a tourist, when you enter the border, you have to give access to five years of your social media history. I don't know. I think some people think, oh, you're futurizing too much. You're catastrophizing too much. But I'm like, wait a minute. That's why we studied history, so we didn't do this again. Right?Jenny (43:13):Yeah. I saw this really moving interview with this man who was 74 years old protesting outside of an nice facility, and they were talking to him and one of the things he said was like, Trump knows immigrants are not an issue. He's not concerned about that at all. He is using this most vulnerable population to desensitize us to masked men, stealing people off the streets.Rebecca (43:46):I agree. I agree. Yeah, a hundred percent. And I think it's desensitizing us. And I don't actually think that that is Trump. I don't know that he is cunning enough to get that whoever's masterminding, project 2025 and all that, you can ask the question in some ways, was Hitler actually antisemitic or did he just utilize the language of antisemitism to mask what he was really doing? And I don't mean that to sort of sound flippant or deny what happened in the Holocaust. I'm suggesting that same thing. In some ways it's like because America is vulnerable to racialized language and because racialized rhetoric moves masses of people, there's a sense in which, let me use that. So you won't be paying attention to the fact that I just stole billions of dollars out of the US economy so that you won't notice the massive redistribution of wealth and the shutting off of avenues to upward social mobility.(45:12):And the masses will follow you because they think it's about race, when in actuality it's not. Because if they're successful in undoing birthright citizenship, you can come after anybody you want because all of our citizenship is based on the fact that we were born on US soil. I don't care what color you are, I do not care what lineage you have. Every person in this country or every person that claims to be a US citizen, it's largely based on the fact that you were born on US soil. And it's easy to say, oh, we're only talking about the immigrants. But so far since he took office, we've worked our way through various Latin cultures, Somali people, he's gone after Asian people. I mean, so if you go after birthright citizenship and you tell everyone, we're only talking about people from brown countries, no, he's not, and it isn't going to matter. They will find some arbitrary line to decide you have power to vote to own property. And they will decide, and this is not new in US history. They took whole businesses, land property, they've seized property and wealth from so many different cultures in US history during Japanese internment during the Tulsa massacre. And those are only the couple that I could name. I'm sure Jenny and Danielle, you guys could name several, right? So it's coming and it's coming for everybody.Jenny (47:17):So what are you guys doing to, I know that you're both doing a lot to resist, and we talk a lot about that. What are you doing to care for yourself in the resistance knowing that things will get worse and this is going to be a long battle? What does helping take care of yourself look like in that for you?Danielle (47:55):I dunno, I thought about this a lot actually, because I got a notification from my health insurance that they're no longer covering thyroid medication that I take. So I have to go back to my doctor and find an alternative brand, hopefully one they would cover or provide more blood work to prove that that thyroid medication is necessary. And if you know anything about thyroids, it doesn't get better. You just take that medicine to balance yourself. So for me, my commitment and part of me would just want to let that go whenever it runs out at the end of December. But for me, one way I'm trying to take care of myself is one, stocking up on it, and two, I've made an appointment to go see my doctor. So I think just trying to do regular things because I could feel myself say, you know what?(48:53):Just screw it. I could live with this. I know I can't. I know I can technically maybe live, but it will cause a lot of trouble for me. So I think there's going to be probably not just for me, but for a lot of people, like invitations as care changes, like actual healthcare or whatever. And sometimes those decisions financially will dictate what we can do for ourselves, but I think as much as I can, I want to pursue staying healthy. And it's not just that just eating and exercising. So that's one way I'm thinking about it.Rebecca (49:37):I think I'm still in the phase of really curating my access to information and data. There's so much that happens every day and I cannot take it all in. And so I still largely don't watch the news. I may scan a headline once every couple days just to kind of get the general gist of what is happening because I can't, I just cannot take all of that in. Yeah, it will be way too overwhelming, I think. So that still has been a place of that feels like care. And I also think trying to move a little bit more, get a little bit of, and I actually wrote a blog post this month about chocolate because when I grew up in California seas, chocolate was a whole thing, and you cannot get it on the east coast. And so I actually ordered myself a box of seas chocolate, and I'm waiting for it to arrive at my house costs way too much money. But for me, that piece of chocolate represents something that makes me smile about my childhood. And plus, who doesn't think chocolate is care? And if you live a life where chocolate does not care, I humbly implore you to change your definition of care. But yeah, so I mean it is something small, but these days, small things that feel like there's something to smile about or actually big things.Jenny (51:30):I have been trying to allow myself to take dance classes. It's my therapy and it just helps me. A lot of the things that we're talking about, I don't have words for, I can only express through movement now. And so being able to be in a space where my body is held and I don't have to think about how to move my body and I can just have someone be like, put your hand here. That has been really supportive for me. And just feeling my body move with other bodies has been really supportive for me.Rebecca (52:17):Yeah. The other thing I would just add is that we started this conversation talking about Marjorie Taylor Green and the ways in which I feel like her response is insufficient, but there is a part of me that feels like it is a response, it however small it is, an acknowledgement that something isn't right. And I do think you're starting to see a little bit of that seep through. And I saw an interview recently where someone suggested it's going to take more than just Trump out of office to actually repair what has been broken over the last several years. I think that's true. So I want to say that putting a little bit of weight in the cracks in the surface feels a little bit like care to me, but it still feels risky. I don't know. I'm hopeful that something good will come of the cracks that are starting to surface the people that are starting to say, actually, this isn't what I meant when I voted. This isn't what I wanted when I voted. That cities like Miami are electing democratic mayors for the first time in 30 years, but I feel that it's a little bit risky. I am a little nervous about how far it will go and what will that mean. But I think that I can feel the beginnings of a seedling of hope that maybe this won't be as bad as maybe we'll stop it before we go off the edge of a cliff. We'll see.Kitsap County & Washington State Crisis and Mental Health ResourcesIf you or someone else is in immediate danger, please call 911.This resource list provides crisis and mental health contacts for Kitsap County and across Washington State.Kitsap County / Local ResourcesResourceContact InfoWhat They OfferSalish Regional Crisis Line / Kitsap Mental Health 24/7 Crisis Call LinePhone: 1‑888‑910‑0416Website: https://www.kitsapmentalhealth.org/crisis-24-7-services/24/7 emotional support for suicide or mental health crises; mobile crisis outreach; connection to services.KMHS Youth Mobile Crisis Outreach TeamEmergencies via Salish Crisis Line: 1‑888‑910‑0416Website: https://sync.salishbehavioralhealth.org/youth-mobile-crisis-outreach-team/Crisis outreach for minors and youth experiencing behavioral health emergencies.Kitsap Mental Health Services (KMHS)Main: 360‑373‑5031; Toll‑free: 888‑816‑0488; TDD: 360‑478‑2715Website: https://www.kitsapmentalhealth.org/crisis-24-7-services/Outpatient, inpatient, crisis triage, substance use treatment, stabilization, behavioral health services.Kitsap County Suicide Prevention / “Need Help Now”Call the Salish Regional Crisis Line at 1‑888‑910‑0416Website: https://www.kitsap.gov/hs/Pages/Suicide-Prevention-Website.aspx24/7/365 emotional support; connects people to resources; suicide prevention assistance.Crisis Clinic of the PeninsulasPhone: 360‑479‑3033 or 1‑800‑843‑4793Website: https://www.bainbridgewa.gov/607/Mental-Health-ResourcesLocal crisis intervention services, referrals, and emotional support.NAMI Kitsap CountyWebsite: https://namikitsap.org/Peer support groups, education, and resources for individuals and families affected by mental illness.Statewide & National Crisis ResourcesResourceContact InfoWhat They Offer988 Suicide & Crisis Lifeline (WA‑988)Call or text 988; Website: https://wa988.org/Free, 24/7 support for suicidal thoughts, emotional distress, relationship problems, and substance concerns.Washington Recovery Help Line1‑866‑789‑1511Website: https://doh.wa.gov/you-and-your-family/injury-and-violence-prevention/suicide-prevention/hotline-text-and-chat-resourcesHelp for mental health, substance use, and problem gambling; 24/7 statewide support.WA Warm Line877‑500‑9276Website: https://www.crisisconnections.org/wa-warm-line/Peer-support line for emotional or mental health distress; support outside of crisis moments.Native & Strong Crisis LifelineDial 988 then press 4Website: https://doh.wa.gov/you-and-your-family/injury-and-violence-prevention/suicide-prevention/hotline-text-and-chat-resourcesCulturally relevant crisis counseling by Indigenous counselors.Additional Helpful Tools & Tips• Behavioral Health Services Access: Request assessments and access to outpatient, residential, or inpatient care through the Salish Behavioral Health Organization. Website: https://www.kitsap.gov/hs/Pages/SBHO-Get-Behaviroal-Health-Services.aspx• Deaf / Hard of Hearing: Use your preferred relay service (for example dial 711 then the appropriate number) to access crisis services.• Warning Signs & Risk Factors: If someone is talking about harming themselves, giving away possessions, expressing hopelessness, or showing extreme behavior changes, contact crisis resources immediately.Well, first I guess I would have to believe that there was or is an actual political dialogue taking place that I could potentially be a part of. And honestly, I'm not sure that I believe that.Well, first I guess I would have to believe that there was or is an actual political dialogue taking place that I could potentially be a part of. And honestly, I'm not sure that I believe that.Rebecca A. Wheeler Walston, J.D., Master of Arts in CounselingEmail: asolidfoundationcoaching@gmail.comPhone:  +1.5104686137Website: Rebuildingmyfoundation.comI have been doing story work for nearly a decade. I earned a Master of Arts in Counseling from Reformed Theological Seminary and trained in story work at The Allender Center at The Seattle School of Theology and Psychology. I have served as a story facilitator and trainer at both The Allender Center and the Art of Living Counseling Center. I currently see clients for one-on-one story coaching and work as a speaker and facilitator with Hope & Anchor, an initiative of The Impact Movement, Inc., bringing the power of story work to college students.By all accounts, I should not be the person that I am today. I should not have survived the difficulties and the struggles that I have faced. At best, I should be beaten down by life‘s struggles, perhaps bitter. I should have given in and given up long ago. But I was invited to do the good work of (re)building a solid foundation. More than once in my life, I have witnessed God send someone my way at just the right moment to help me understand my own story, and to find the strength to step away from the seemingly inevitable ending of living life in defeat. More than once I have been invited and challenged to find the resilience that lies within me to overcome the difficult moment. To trust in the goodness and the power of a kind gesture. What follows is a snapshot of a pivotal invitation to trust the kindness of another in my own story. May it invite you to receive to the pivotal invitation of kindness in your own story. Listen with me…  Well, first I guess I would have to believe that there was or is an actual political dialogue taking place that I could potentially be a part of. And honestly, I'm not sure that I believe that.

Neurologists are privileged to act as guides for patients as they navigate the complex course of serious neurologic illnesses. Because of the impact on quality of life, personhood, and prognosis, neurologists must be able to conduct serious-illness conversations to improve rapport, reduce patient anxiety and depression, and increase the likelihood that treatment choices agree with patient goals and values. In this episode, Teshamae Monteith, MD, FAAN speaks with Jessica M. Besbris, MD, author of the article "The Approach to Serious-Illness Conversations" in the Continuum® December 2025 Neuropalliative Care issue. Dr. Monteith is the associate editor of Continuum® Audio and an associate professor of clinical neurology at the University of Miami Miller School of Medicine in Miami, Florida. Dr. Besbris is an assistant professor of neurology and internal medicine, and the director of the neuropalliative care, at Cedars-Sinai Medical Center in Los Angeles, California. Additional Resources Read the article: The Approach to Serious-Illness Conversations Subscribe to Continuum®: shop.lww.com/Continuum Earn CME (available only to AAN members): continpub.com/AudioCME Continuum® Aloud (verbatim audio-book style recordings of articles available only to Continuum® subscribers): continpub.com/Aloud More about the American Academy of Neurology: aan.com Social Media facebook.com/continuumcme @ContinuumAAN Host: @headacheMD Guest: @JessBesbris Full episode transcript available here Dr Jones: This is Dr Lyell Jones, Editor-in-Chief of Continuum. Thank you for listening to Continuum Audio. Be sure to visit the links in the episode notes for information about earning CME, subscribing to the journal, and exclusive access to interviews not featured on the podcast. Dr Monteith: Hi, this is Dr Teshamae Monteith. Today I'm interviewing Dr Jessica Besbris about her article on the approach to serious illness conversation, which is found in the December 2025 Continuum issue on neuropalliative care. How are you? Dr Besbris: I'm doing great. Thank you so much for having me here today. Dr Monteith: Well, thank you for being on our podcast. Dr Besbris: My pleasure. Dr Monteith: Why don't we start off with you introducing yourself? Dr Besbris: Sure. So, my name is Jessica Besbris. I am a neurologist with fellowship training in palliative care, and I am currently at Cedars Sinai Medical Center in Los Angeles, where I am the director of our neuropalliative care program. Dr Monteith: Excellent. So, how did you get involved in that? Dr Besbris: Like, I think, many neurologists, I always knew I wanted to be a neurologist---or, I should say, from the moment I decided to be a doctor I knew that that was the type of doctor I wanted to be, a neurologist. So, I went into medical school with the aim of becoming a neurologist. And very quickly, when I started my clinical years, I was exposed to patients who were living with very serious illnesses. And I found myself really drawn to opportunities to help, opportunities to make people feel better, opportunities to improve quality of life in situations that on the face of it seemed really challenging, where maybe it seemed like our usual treatments were not necessarily the answer or were not the only answer. And so, I pretty quickly recognized that taking care of patients with serious illness was going to be a big part of my life as a neurologist and that palliative care was the way I wanted to help these patients and families. Dr Monteith: And you mentioned you're leading the group. So, how many colleagues do you have in the program? Dr Besbris: We have a very large palliative care group, but within neuropalliative care, it's myself and one other physician, a nurse practitioner, and a social worker. Dr Monteith: Okay, well, I know you guys are busy. Dr Besbris: Yes, we are very happy to be busy. Dr Monteith: Yes. So, let's talk about the objectives of your article. Dr Besbris: Sure. So, the goal of this article is to impress upon neurologists that it really is all of our jobs as neurologists to be having these conversations with our patients who are affected with serious illness. And then, in most areas of neurology, these conversations will come up. Whether it's giving a life changing diagnosis, or talking about treatment choices, or treatment not going the way that we had hoped, or even sometimes progression of disease or end-of-life care. These topics will come up for most of us in neurology, and really, we're hoping that this article not only makes the case that neurologists can and should be having these conversations, but that there are skills that we can teach in this article and with other resources to improve the skill level and sense of confidence that neurologists have when they enter into these conversations. Dr Monteith: Great. I read that there are some developments in the field, on organizational levels, about really making these skills part of standard of care in terms of education. So, can you speak to that? Dr Besbris: Yes. So, there have been a couple of really landmark papers and changes in the educational landscape that I think have really brought neuropalliative care in general, and serious illness conversation in particular, to the forefront. So, there were the position statements released by the American Academy of Neurology in 1996 and 2022, both of which really said, hey, all neurologists should be doing this and receive training on how to have these conversations and provide this care. And the ACGME, the Accreditation Council for Graduate Medical Education, also requires neurology residency programs to learn how to communicate with patients and families, assess goals, and talk about end-of-life care. So, there's a real structural imperative now for neurologists to learn early on how to have serious illness conversations with their patients. Dr Monteith: Great. If there's anything for our listeners to get out of this conversation, what are the essential points? Dr Besbris: If you only take away one or two things from this conversation, I hope that they're that this is an awesome responsibility to be in a moment with a patient going through something challenging, to meet them in that moment with thoughtful, honest, empathic conversations about who they are and what's important to them. And that, just like any other procedure, these are skills that can be taught so that you can feel really confident and comfortable being in these moments. Dr Monteith: Excellent. Wow. Okay, I feel your energy and your empathy already. And so, why don't we just talk about skills? What is the best way to deliver tough news? I read this wonderful chart on SPIKES protocol. Dr Besbris: Yeah, the SPIKES protocol is one really well-known way to deliver serious news. And what's nice about SPIKES is it gives a mnemonic. And as neurology learners, we all love a good mnemonic to help you really center yourself when you're entering into these conversations so that you have a structured format to follow, just like with any procedure. So, the SPIKES protocol stands for Setting: so, making sure you have the right environment; Perception, or assessing what your patient or surrogate decision maker knows already so that you know where to begin; receiving an Invitation to deliver serious news. And then K stands for Knowledge, delivering in a clear and concise way the information that you want to make sure the family or patient walk away with. E for exploring Emotion; and S for really Summarizing what's been discussed and Strategizing on next steps. I think that having these kinds of conversations, it's just like being expert in anything. When you first start learning, it's helpful to have a set of very concrete steps you can follow. And you might even think through the mnemonic as you get ready to walk into that room. And as you become more expert, the flow becomes more natural. And maybe what you do before walking in to prepare is just honing what is that headline? What is that concise statement that I'm really going to give? And the rest may start to feel more natural and less protocolized. Dr Monteith: And there are a few other mnemonics. There's the NURSE mnemonic, which I like. You know, there's a balance between saying things and sounding kind of… you know, sometimes they're like, well, how could you understand what I'm going through? Have you been through something like this? And people shy away, and they're afraid to kind of be a part of these conversations. So how do we approach that with this, a NURSE mnemonic in a way that's kind of sincere? Dr Besbris: Absolutely. So, the NURSE mnemonic, unlike SPIKES, is not a step-by-step protocol. So, NURSE is a mnemonic, but you don't go through each letter and sort of give a naming statement and then an understanding statement and then a respecting statement and so on. Nurse is really a toolkit of different types of statements that we can give in response to emotions so that when you find yourself in a situation where a patient or family member is tearful, is scared, is angry, is expressing feelings, you have some phrases ready that feel authentic to you and that you feel are going to meet the moment and allow you to empathically respond to those emotions. Because until we do that, we really can't move further in this conversation with our patients and families feeling heard and respected. So, that NURSE mnemonic, those Naming, Understanding, Respecting, Supporting and Exploring statements, are really examples of statements that we can use to meet that moment with empathy and understanding and without implying that we have walked in their shoes. We want to avoid being presumptuous and really focus on just being present and empathic. Dr Monteith: So, let's just kind of run through, I think it's really important. Let's run through some of these examples. Maybe if someone's crying hysterically, how would we respond to that? Dr Besbris: So, this is an opportunity for Naming. And I made this one, I think, in the chart, a little bit obvious, meaning that we recognize when someone is crying that they are feeling probably very sad. This is an opportunity for us to name and thus normalize that emotion. I just think something as simple as, I think anyone would be really sad hearing this. These responses are not intended to fix this emotion. I'm not trying to get someone to stop crying or to, you know, necessarily not feel sad. It's really just to say, yeah, it's normal that you're feeling sad. It's okay. I'm here with you while you're feeling sad. And I'm going to be with you no matter what you're bringing to the table. Dr Monteith: Yeah. Let's go through just a couple of others. I mean, these are really good. Dr Besbris: Sure. Maybe Respecting. Dr Monteith: Yeah. So, my Dad is a fighter. Only God, not doctors, can know the future. Dr Besbris: Yeah. So, I love giving these examples with our learners because these statements, things like my Dad is a fighter or God will bring me a miracle or you don't know the answer. Only God knows what's going to happen, I think that they give a lot of doctors a feeling of confrontation, a feeling of anxiety. And I think there are a few reasons for that. And I think one of the main ones is that they're statements that imply that we as doctors are not all-powerful and it's our patients or families sort of looking for a different locus of control, whether it's internal fortitude or a higher power. They're looking to something other than us, and maybe that makes us feel a little bit uncomfortable. And I think that sometimes physicians think that these statements imply that someone doesn't even understand what's going on. But maybe they're coming to this from a place of denial. And I would argue that when someone comes to you with a statement like my dad is a fighter or, you know, I'm looking to God to bring me a miracle or to show me the future. I think that what they're really saying is, wow, I'm really hearing that things are serious, so much so that I'm reaching for these other resources to give me strength and hope. I don't think anyone asks for a miracle if they think that a miracle is not needed, if the problem is easy to fix. And so, rather than come to these types of statements from a confrontational place of I'm the doctor and I know best, I think this is a great opportunity to show some respect and give some respecting statements. Your dad is a fighter. I don't think he could have come this far without being a fighter. Or, you know, I am so grateful that you have your faith to lean on during times like these to give you strength. These are also nice opportunities for exploring statements. For example, I'm so grateful to learn more about your dad. Can you tell me what it is that he has been fighting for all of this time? Dr Monteith: I love that. It's like a follow-up, and also validating. Dr Besbris: Yeah, it's validating. And it allows us to learn a little bit more about this person and to learn, well, is he fighting for a life that we can still achieve with our interventions to lead into the next part of a conversation? Or, is God is going to bring me a miracle? Well, tell me what a miracle looks like for you. I can't tell you how many times I thought someone was going to tell me that a miracle would be cure. And sometimes that is what comes up. But other times I hear, a miracle would be, you know, my loved one surviving long enough for the rest of the family to gather. And, you know, that is certainly something we can work towards together. Dr Monteith: So, why don't we talk a little bit about approach to goals of care discussions? They are tough, and let's just put it into perspective to the critical care team. It's time, the person's been in the ICU, the family wants everything thrown at medically. And it's to the point that the assessment is that would be medical futility. Dr Besbris: Lots to unpack there. Dr Monteith: I wanted to make it hard for you. Dr Besbris: No, no, this is good! I mean, this is something- I work in a, you know, almost one thousand-bed hospital with a massive critical care building. And so, these are not unusual circumstances at all. First of all, I would just say that goals of care conversations are not only about end-of-life care. And I make that point a few different times in the article because I think when people imagine goals of care, and one of the reasons that I think clinicians may sometimes shy away from goals of care discussions, is that they think they have to be sad, they have to be scary, they have to be about death and dying. And I would argue that, really, goals of care discussions are about understanding who a person is, how they live their life, what's most important to them. Most of these conversations should be about living. How are we going to together achieve a quality of life that is meaningful for you and treatments that are going to fit your needs and your preferences? But there is a little slice of that pie in the pie chart of goals of care discussions that is in the arena of end-of-life care. For example, ICU care with, really, the highest levels of intensity of care, and having to talk about whether that still is meeting the moment from the perspective of goals as well as the perspective of efficacy. So, from the goals standpoint, I approach these conversations just like any other goals of care conversation. Usually at this point, we're speaking to family members and not our patients because in a neurocritical care unit, if someone is that sick, they probably are incapacitated. And so, it's a moment to really sit down with family and say, please tell me about the human being lying in that bed. They can't introduce themselves. What would they tell me about themselves if they could speak right now? What kinds of things were important to them in the course of their treatment? What kind of a life did they want to live or do they want to live? So that then we can reflect on, well, can our treatment achieve that? And this process is called shared decision making. This is really where we take in data from the family, who are experts in the patient, and then our own expertise in the illness and what our treatments can achieve, and then bring all of that information together to make a recommendation that aligns with what we believe is right for a particular patient.  So, in the example that you gave, the extreme circumstance where someone is receiving maximal intensive care and we're starting to reach the point of futility, I think that we need to first really understand, well, what does futility mean for this particular patient? Is it that we as healthcare providers would not value living in the state this person is in? Or is it that the treatments truly cannot physiologically keep them alive or meet their stated goals? If it's the first one, that I wouldn't want to be on machines unconscious, you know, at the end of my life, well, I have to set that aside. It's really about what this patient wants. and if the family is telling you they valued every breath, every moment, and if we have care that can achieve that, we should continue to offer and recommend that care. And as healthcare providers, it is so important that we do explain when treatments are not going to be able to physiologically meet a patient's needs or achieve their goals. And that's where we can say, I'm going to continue to do everything I can, for example, to, you know, keep your loved one here for these meaningful moments. And we are at a point where performing CPR would no longer be able to restart his heart. And I just wanted to let you know that that's not something that we're going to do because I have an obligation not to provide painful medical treatments that will not work. So, my approach to futility is really different than my approach to shared decision-making because in the context of objective futility, it's not about necessarily- it's not about decision-making, it's not about shared decision-making as much as it is explaining why something is simply not going to work. Does that make sense? Dr Monteith: Absolutely. And what I love in your article is that, you know, you go beyond the skills, but also potential communication challenges---for example, patients' neurologic status, their ability to understand complex communication, or even cultural differences. So, can you speak about that briefly? Dr Besbris: Absolutely. In the world of neurological serious illness, it is incredibly common for our patients to face challenges in communication. That might be because they are aphasic, because they have a motor speech deficit, it might be because they're intubated, it might be because their capacity is diminished or absent. And so, there are a lot of challenges to keeping patients in these conversations. And in the article, I summarize what those challenges can look like and some strategies that we can use to continue to engage our patients in these conversations to the greatest extent possible and also turn to their surrogate decision makers where the patients themselves are no longer able to participate or participate fully. In terms of cultural considerations, I mean, there could be an entire article or an entire Continuum just on cultural considerations in neurology and in serious illness communication. And so, the key points that I really tried to focus on were exploring from a place of cultural humility what the beliefs and practices of a particular patient and family are in their cultural context, to ask questions to help you understand how those cultural differences may impact the way you approach these conversations. And being sensitive to folks with limited English proficiency, to ensure that we are using medical interpreters whenever possible. Dr Monteith: Excellent. Well, there's so much in the article. There's already so much that we just discussed, but our listeners are going to have to go to the article to get the rest of this. I do want to ask you to just kind of reflect on, you know, all the different cases and experiences that you have, and just, if you can give us a final remark? Dr Besbris: I can think of a number of cases that I've seen in my work as both an inpatient and outpatient neuropalliative provider where I've seen patients after strokes in the hospital with uncertain prognosis, whose families were struggling with a decision around feeding tubes. And where we have made a determination based on goals; for example, to pursue what's called a time-limited trial, to say let's place a feeding tube, let's meet again in the clinic in a few months after some rehab and let's just see, is this meeting this patient 's goals and expectations? I have been pleasantly surprised by the number of patients who have walked into my office after a period of rehabilitation who have regained the ability to eat, who are living an acceptable quality of life, and who have expressed gratitude for the work that I did in eliciting their goals, helping support their families. And some of whom have even come in and said, now that I'm doing better, I'd really like to do an advance directive to better guide my family in the future. People asking for more goals of care discussions, having seen how successful and helpful these conversations have been. Dr Monteith: Great. That's really life-altering for that patient, the family, so many people. Thank you so much for the work you do and for writing this great article and sharing all of this that we really need to learn more about. Dr Besbris: It's been a privilege. Thank you so much for talking with me today. Dr Monteith: Today I've been interviewing Dr Jessica Besbris about her article on the approach to serious illness conversation, which is found in the December 2025 Continuum issue on neuropalliative care. Be sure to check out Continuum Audio episodes from this and other issues. And thank you to our listeners for joining today. Dr Monteith: This is Dr Teshamae Monteith, Associate Editor of Continuum Audio. If you've enjoyed this episode, you'll love the journal, which is full of in-depth and clinically relevant information important for neurology practitioners. Use the link in the episode notes to learn more and subscribe. AAN members, you can get CME for listening to this interview by completing the evaluation at continpub.com/audioCME. Thank you for listening to Continuum Audio.

Welcome back to the Iron Sight Podcast. Today I'm in the studio with Cece and Ryan, and we're digging into one of the most persistent myths in the fitness world: the repetition continuum. You've heard it before — heavy weights for strength, moderate reps for hypertrophy, and light loads for endurance. It's simple, it's clean… and it's not really true.In this episode, we break down where that model came from, why it stuck around for so long, and what the current research actually says. We talk about some of the voices online influencing this conversation, and a well-known researcher who pretty much takes a sledgehammer to the old rep-range chart. We're going to cover what really drives strength, growth, and endurance — and how to use that information to train smarter, adapt better, and get more out of the work you're already doing.Enjoy the show!-25% OFF! Red Dot Fitness Programs: rdfprograms.comFFA Program:  https://reddotfitness.net/fitforactionRed Dot Fitness Training Programs:rdfprograms.comOnline Membership (Full Access To All Programs & Virtual Coaching):https://www.reddotfitness.net/online-membershipVirtual Coaching:https://www.reddotfitness.net/virtual-coachingSelf-Guided Programs:https://www.reddotfitness.net/Self-Guided-Programs1(NEW) Iron Sights Podcast Website:ironsightspodcasts.comTimestamps:00:00 Intro03:48 Fitness Myths05:26 Rep Continuum08:44 Industry Issues14:56 Practical Tips29:42 Hypertrophy Zone Myth33:35 Rep Basics39:07 Failure Training39:39 Programming47:56 Endurance MythsConnect With Us:Website - https://ironsightspodcast.com/Instagram - https://www.instagram.com/ironsightspodcast/Facebook - https://www.facebook.com/

This podcast is brought to you by Outcomes Rocket, your exclusive healthcare marketing agency. Learn how to accelerate your growth by going to⁠ outcomesrocket.com Care coordination shouldn't feel like a black box. In this episode, Ben Forrest, CEO of Olio, discusses how his team is reimagining collaboration among payers, health systems, and post-acute providers for the most complex patients. He shares why fragmented workflows create massive administrative burden, how real-time engagement across 100+ care sites improves outcomes, and why downstream provider relationships directly shape cost and quality. Ben also reflects on the future of AI in care coordination and the bold bets he believes will reshape medical spend. Tune in and learn how better coordination can transform patient journeys! Resources Connect with and follow Ben Forrest on LinkedIn. Follow Olio on LinkedIn and discover their website!

"Working as an oncology infusion nurse, being oncology certified, attending chapter meetings, going to ONS Congress® has really taught me plenty. But being an oncology patient taught me way more. I know firsthand the fears 'you have cancer' brings. Then going through further testing, CT scans, MRIs, genetics, the whole preparation for surgery was something I never considered when I treated a breast cancer patient," ONS member Catherine Parsons, RN, OCN®, told Valerie Burger, MA, MS, RN, OCN®, CPN, member of the ONS 50th anniversary planning committee, during a conversation about her experience being an oncology nurse and cancer survivor. Burger spoke with Parsons and ONS members Margaret Hopkins, MSN, RN, OCN®, HNB-BC, and Afton Dickerson, MSN, AGACNP-BCP, CBCN®, AOCNP®, CGRA, about how cancer survivorship has shaped their careers as oncology nurses and personal lives. Music Credit: "Fireflies and Stardust" by Kevin MacLeod Licensed under Creative Commons by Attribution 3.0  Episode Notes  This episode is not eligible for NCPD.  ONS Podcast™ episodes: 50th anniversary series Episode 385: ONS 50th Anniversary: Evolution of Cancer Survivorship Episode 263: Oncology Nursing Storytelling: Renewal Episode 253: The Ethics of Caring for People You Know Personally Episode 187: The Critical Need for Well-Being and Resiliency and How to Practice Episode 91: The Seasons of Survivorship ONS Voice articles: Being a Patient Taught Me How to Be a Better Oncology Nurse by Margaret Hopkins Sharing Our Stories Supports, Celebrates, and Advances the Nursing Profession Our Unified Voices Can Improve Cancer Survivorship Care Why I Truly Understand How Our Patients Hold Onto Hope ONS book: Oncology Nurse Navigation: Delivering Patient-Centered Care Across the Continuum (third edition) ONS course: Essentials in Survivorship Care for the Advanced Practice Provider ONS Nurse Well-Being Learning Library ONS Huddle Cards: Coping Moral Resilience Survivorship Care Connie Henke Yarbro Oncology Nursing History Center To discuss the information in this episode with other oncology nurses, visit the ONS Communities. To find resources for creating an ONS Podcast club in your chapter or nursing community, visit the ONS Podcast Library. To provide feedback or otherwise reach ONS about the podcast, email pubONSVoice@ons.org. Highlights From This Episode Parsons: "I thought I knew cancer. I thought I knew the treatment. I thought I knew the side effects. There's so much I didn't know. There's so much behind the scenes before a patient comes and sits in my chair. The stuff that they go through I now can understand. It surprised me how much I didn't know." TS 11:39 Hopkins: "I had been thinking I'm going to be that hero, that I can go to work. I work at night, get 8 am radiation appointments, and go home and go to sleep and wake up and go to work again because everyone said, 'Oh, it's not that bad. Radiation will be okay. You can work.' … But the real challenge for me was I didn't know how to be a patient and a nurse at the same time. And my first radiation treatment, I go in there, and I change into the gown, and then I started cleaning up because I was getting treatment done at the hospital where I worked, and were taught if you see a mess, you clean it. So I was acting like a nurse. And I almost wanted to go help the other patients, but I couldn't because I had to focus on healing." TS 15:36 Dickerson: "What made the difference for me were the nurses who didn't just treat my illness. They treated me as a whole person—my emotions, my feelings. They made me smile. They would hold my hand or just take a moment to really ask, 'Hey, how are you?' And those small, little gestures made me feel worthy, made me feel like a human. I always tell nurses it's not just about the chemo; it's about the connection. Sometimes your presence is the most healing thing that you can offer to your patient." TS 30:52

St. Louis City officials and advocates for the homeless say they are bracing for, and oppose, the Trump administration's cuts to programs that put homeless people in permanent homes. In November, HUD Secretary Scott Turner called the use of billions of dollars to provide permanent housing a “Biden-era slush fund” that would be replaced by a focus on temporary housing. Local advocates for the homeless from Gateway Housing First and the director of the city's Department of Human Services say the change could put hundreds of people in St. Louis at risk of returning to homelessness. In this episode, we also learn how the life of one family was changed through St. Louis' Continuum of Care program, which allowed them to escape homelessness and move into an apartment of their own.

With over 20 years of extensive clinical experience, Dr. Kedzierska is a Board Certified Clinical Specialist in Neurologic Physical Therapy from the American Board of Physical Therapy Specialties. She serves as a faculty member of an Accredited Physical Therapy Neurology Residency Program. She mentors department staff on assessment/treatment for related diagnosis. She has presented in local and national conferences and is a published author in the ANPT newsletter and Brain Injury Journal. She received her Master's Degree in Physical Rehabilitation in Poland, Advanced Master's Degree from NYU and a doctorate degree from Northeastern University serving a variety of populations. Dr. Fay is a board certified Neurologic Clinical Specialist through the American Board of Physical Therapy Specialties and is a member of the faculty of the Neurological Residency program at Rusk Rehabilitation at NYU Langone Medical Center. She is an active member of the American Physical Therapy Association (APTA), and has served on the APTA's Vestibular EDGE Task Force; a select group of therapists chosen to review measures designed for assessment and treatment of patients with vestibular deficits. She has lectured at both local and national conferences on Vestibular Rehabilitation and is a published author in the Journal of Pediatric Physical Therapy. Her areas of special interest include vestibular rehabilitation in individuals with symptoms of dizziness. Part 1: The interview included the following topics: common vestibular disorders; challenges treating patients with vestibular disorders; other specialists involved in providing treatment; overlapping symptoms; advances in diagnosis; distinguishing between peripheral and central vestibular disorders; patient compliance; and involvement of family members in treatment.

In this episode, Lyell K. Jones Jr, MD, FAAN, speaks with Maisha T. Robinson, MD, MSHPM, FAAN, FAAHPM, who served as the guest editor of the December 2025 Neuropalliative Care issue. They provide a preview of the issue, which publishes on December 2, 2025. Dr. Jones is the editor-in-chief of Continuum: Lifelong Learning in Neurology® and is a professor of neurology at Mayo Clinic in Rochester, Minnesota. Dr. Robinson is the Chair of the Division of Palliative Medicine and an assistant professor of neurology at Mayo Clinic in Jacksonville, Florida. Additional Resources Read the issue: continuum.aan.com Subscribe to Continuum®: shop.lww.com/Continuum Continuum® Aloud (verbatim audio-book style recordings of articles available only to Continuum® subscribers): continpub.com/Aloud More about the American Academy of Neurology: aan.com Social Media facebook.com/continuumcme @ContinuumAAN Host: @LyellJ Guest: @neuropalldoc Full episode transcript available here Dr Jones: Most of us who see patients with chronic progressive neurologic disease are aware of the value of palliative care. The focus on symptom management and quality of life is a key aspect of helping these patients. But how many of us are comfortable starting the conversation about palliative care or care at the end of life? Today we have the opportunity to speak with a leading expert on neuropalliative care, Dr Maisha Robinson, about how we can better integrate neuropalliative care into our practices. Dr Jones: This is Dr Lyell Jones, Editor-in-Chief of Continuum. Thank you for listening to Continuum Audio. Be sure to visit the links in the episode notes for information about subscribing to the journal, listening to verbatim recordings of the articles, and exclusive access to interviews not featured on the podcast. Dr Jones: This is Dr Lyell Jones, Editor-in-Chief of Continuum: Lifelong Learning in Neurology. Today I'm interviewing Dr Maisha Robinson, who is Continuum's Guest Editor for our latest issue of Continuum on neuropalliative care, and our first-ever issue fully dedicated to this topic. Dr Robinson is an assistant professor of neurology at Mayo Clinic in Florida, where she is Chair of the Division of Palliative Medicine, and she also serves on the AAN Board of Directors as Chair of the Member Engagement Committee. Dr Robinson, welcome. Thank you for joining us today. Why don't you introduce yourself to our listeners? Dr Robinson: Well, Dr Jones, thank you for having me. Really a pleasure to be here. I'm Maisha Robinson at the Mayo Clinic in Jacksonville, Florida. I spent my time as a neurohospitalist, a general palliative care physician, and a neuropalliative care physician. Dr Jones: So, this is a topic that at Continuum, we have heard about from subscribers for a long time requesting a fully dedicated issue to palliative care. And we've titled this neuropalliative Care. So, we want to respond to our subscribers and bring them content that they're interested in. I also think that palliative medicine is a big education gap in our specialty of neurology and something that we have room to improve on. So, let's start with the basics, Dr Robinson. Palliative medicine has been around for a long time, but this concept of "neuropalliative care" feels relatively new. What is neuropalliative care? Dr Robinson: That's a great question. Generally, what I would say is palliative care, first of all, is really just a specialty that focuses on trying to improve quality of life for people that have a serious or advanced medical condition. And neuropalliative care is really palliative care for people with neurologic conditions. And you'll see a number of neurologists doing neuropalliative care, but also there are internists as well, and people from other specialties, who focus on patients with neurologic disease and really trying to improve their quality of life. Dr Jones: Got it. And so, it's really the principles of palliative medicine in a specialty-specific context, which I think is important for us given the prevalence of chronic disease in our specialty. And I was obviously reading through these articles in this issue, and in the really wonderful articles, there are some themes that came up multiple times in various different articles. And one of them was obviously the importance of communication with patients and families. I think, and I'm speaking a little bit from personal experience here, many physicians feel uncomfortable bringing up the discussion of palliative care. And I'm sure that is something that reflects on your practice, too. How often do you have a patient who shows up to clinic and they ask you, why am I here? Dr Robinson: It happens all the time, because colleagues who are referring patients are nervous to tell them that they're sending them to palliative care. But we try to tell people it's really just to normalize it, to say that the palliative care team is going to see you, they're going to help with some symptoms, they're going to help you think about big picture, and they're going to be sort of an added layer of support to your team. And I think if people approach it from that standpoint, then patients and family members will say, that sounds great, I need a little extra support. Dr Jones: So, I think most neurologists have a threshold at which they would feel more comfortable having specialty support, having a palliative medicine specialist to help them in symptom management with the patient. For the palliative care that they provide themselves---and we want our subscribers to read this issue and feel more comfortable with delivering some palliative care on their own---how would you encourage them to begin that conversation? How should they initiate that conversation with a patient about working more toward palliative management of symptoms? Dr Robinson: So, one of the things we recommend is really introducing an approach to palliative care very early in the disease process. So, discussions about big picture and goals of care, discussions about who might help make medical decisions if the person can't make them for themselves. Those kinds of things can be discussed very early on. And in fact, that's palliative care. And then they can talk to patients more about the fact that as the disease progresses, there may be an additional team that can help walk along alongside the neurologist in helping you prepare for what's to come. You know, I think it's very important for patients and family members who feel like you're not abandoning them, but you're adding additional resources. And so, I like the way that we often will suggest to people to say partner or collaborate or bring in extra resources with the palliative care team. I think patients and family members will respond to that. Dr Jones: Yeah. So, by talking about it early, you kind of, at least, help to avoid that problem of the patient perceiving the introduction of palliative care as the quote-unquote "giving-up problem." Is that right? Dr Robinson: Correct. Because we also don't want to see people who are just being referred to us for end-of-life care. Palliative care is about much more than that. But if patients will Google palliative care, they may see hospice come up. And so, introducing the concept early and discussing some palliative topics early will allow the patient and family members to think that, okay, this isn't because I'm at the end of life. This is just because my clinician wants to make sure that I have all the bases covered. Dr Jones: This was also mentioned in several of the articles, the studies that have shown how frequently palliative care is initiated very near the end of life, which is usually, I think, perceived as a missed opportunity, right? To not wait so long to take advantage of what palliative care has to offer. Dr Robinson: That's correct. And the benefit of palliative care is that oftentimes we work alongside an interdisciplinary team, a team that could be quite helpful to patients and their support systems throughout the course of the disease. So, we have chaplains, we have nurses, we often have other clinicians, advanced practice providers as well, who work with us. We have spiritual advisors as well. And the patients and family members could benefit from some of those resources throughout the course of the disease. Who they might need to meet with may vary depending on what the disease is and how they're doing. But there's definitely some benefit to having a longitudinal relationship with the palliative care team and not just seeking them out at the end of life. Dr Jones: So- that's very helpful. So, it'll obviously vary according to an individual provider's level of comfort, right, where they're comfortable providing certain palliative management care versus when they need to have some assistance from a specialist. Are there types of care or are there certain thresholds that you say, wow, this patient really should go see a specialist in palliative medicine or neuropalliative care? Dr Robinson: So, I think that if there are, for instance, refractory symptoms, where the neurologist has been working with a patient for a while trying to manage certain symptoms and they're having some challenges, that person may benefit from being referred to palliative care. If patients are being hospitalized multiple times and frequently, that may suggest that a good serious-illness conversation may be necessary. If there are concerns about long-term artificial nutrition, hydration, or functional and cognitive decline, then some of those patients have benefited from palliative care. Not only the patient, but also the caregiver, because our team really focuses on trying to make sure that we're walking through the course of disease with these patients to ensure that all of the needs are managed both for the patient and the family member. Dr Jones: Got it. And that's very helpful. And I know that we talk about a lot of these decisions happening in an ideal environment when there's good access to the neurologist and good access to a palliative medicine specialist or even a neuropalliative medicine expert. In your general sense, I- and maybe we'll talk a little bit here in a minute or two about the growing interest in neuropalliative care. But in terms of access, in terms of availability of really, truly neuropalliative expertise, what is your sense of how widely available that is in the US? Dr Robinson: There's a shortfall of palliative care clinicians in the United States. Everybody who needs a palliative care clinician won't have access to one. And I think your point about the primary palliative care is so important. That's really what we encourage all clinicians, neurologists, neurosurgeons, even, physiatrists, the neurology care team members need to be comfortable with at least initiating some of these conversations. Because, to your point, not everyone's going to have access to a palliative care physician. But by reading issues such as this one, attending some courses---for instance at the American Academy of Neurology meetings---, doing some online trainings, those types of things can be helpful to bring any neurology clinician up to speed who certainly may not have access to a palliative care physician. Dr Jones: So, I know---and this is in part from my own conversations with patients in my own practice---there are a number of fears that patients have when they have a chronic disease, something that's progressive or something that we don't have a curative treatment for. But I think one of, if not the most common fear among patients is pain, and pain that can't be managed adequately during the course of chronic illness or at the end of life. One of the interesting concepts that I saw mentioned in a few of the articles in this issue is this concept of total pain. So, not just the somatic pain that I think we tend to think of as clinicians and patients tend to think of as patients, but a more holistic definition of pain. Walk us through that and how that relates to palliative medicine. Dr Robinson: So, Dame Cicely Saunders, the modern-day founder of palliative medicine, really described this biopsychosocial model for pain. And so, you're right, it's not just physical pain, but it's psychological pain, it's spiritual pain. And oftentimes when we are taking care of patients with neurologic disease, they may have some physical pain, but a lot of them are thinking about, for instance, the things that they will miss, which may cause some internal discomfort. Things that they're grieving, the life they thought they were going to have, the person that they used to be, the life they used to have, and what they anticipated their life as being. And some of that can cause people to have not only the spiritual discomfort, but also some psychological discomfort as well. And so, when we're thinking about how to provide rehensive care to these patients, we have to be thinking about all of these aspects. Dr Jones: It's really helpful. And I guess the more you can identify those, the more you can either help yourself or find the right expert to help the patient. I thought that was an interesting expansion of, of my view of how to think about pain. And another observation that came up in several of the articles was a lack of high-quality clinical trial evidence to inform a lot of the interventions in neuropalliative care. Some of them are common-sense, some of them are based on clinical experience or expert advice. In your own practice, if there was one key knowledge gap to close---in other words, if there was one pivotal trial that we could do to answer one question in helping patients with chronic neurologic disease---what would you say is the main gap? Dr Robinson: I think the real gap is, who needs palliative care and when? That seems very simple. We have tried things such as automatic triggers for palliative care, for instance, in patients with ALS, or we've said that maybe all glioblastoma patients should see palliative care. But is that true? Are we utilizing the resources in the best possible way that we can? We're not sure. And so, you'll see these practices doing things all a little bit different because we don't have a best practice and it's not really standardized about when people should see palliative care, or why, for instance, they should see palliative care, or who should see palliative care. And I think if we could help drill that down, we can provide some better guidance to our colleagues about when and why and who should see palliative care. Dr Jones: It's a really kind of a fundamental, foundational, who needs the service to begin with or who needs to care. Okay, that's- that is a big gap. So, one of the interesting concepts that I read- and it was in Benzi Kluger's article on neuropalliative care for patients who have movement disorders. I think it's a concept that is interesting, really, maybe in the management of patients with a lot of different chronic, progressive neurologic diseases. And it's this idea of stealing victories or bringing joy to patients. In other words, not just managing or trying to minimize some of the negative aspects or symptoms of disease, but looking for opportunities to bring something positive to their experience or improving their quality of life. Tell us a little more about that, because I think that's something patients would appreciate, but I think neurologists would appreciate that, too. Dr Robinson: Dr Kluger loves to talk about sustaining and finding joy in patients who have really serious or advanced neurologic conditions. He likes to talk about stealing victories, which can relate to the fact that patients and their loved ones can find even some benefit despite having a serious or advanced neurologic condition. Neurologists and neurology clinicians also can steal victories in their patients when they notice, for instance, that they've gained a new skill, and they've lost a skill that they used to love because of the advancing disease. And this is just an opportunity for not only the patients and family members, but also the care providers to recognize that in the midst of decline, there are positive things to be found. Dr Jones: I think it gives patients a sense of maybe reclaimed autonomy when they can say, well, there's maybe nothing I can do to cure this disease in the conventional sense, but I can maybe go on this trip with my family, which has been something I've always wanted to do. Or, I can do these things, so I can attend certain events that I want to. And I think that autonomy and independence aspect of that, I think that I think that was really meaningful and something that I'm going to bring back to my own practice in my care of patients who have ALS, for example. When you think about neuropalliative care---and you've been a leader in this area, Dr Robinson---what do you think the biggest change in neuropalliative care has been over the last few years? Dr Robinson: I think there's a growing cohort of people who are recognizing that there is some benefit in having dedicated specialists who focus on palliative care for patients with neurologic disease. When I said I was going to do neuropalliative care, somebody asked me, why would a neurologist be interested in palliative care? Over the last decade and a half, we've seen that shift. And not only are our colleagues recognizing the benefit, but also patients and caregivers are. Some are even asking for palliative care. I think people are recognizing that not only having their primary neurologist or neurology clinician taking care of them, they have this extra layer of support, and this extra team really focused on quality-of-life issues can be beneficial. Dr Jones: So, one of the things that I think you and I have both seen, Dr Robinson, is a growing interest among neurology trainees in palliative medicine. And maybe that's anecdotal, but in my own practice, I've seen more and more trainees express an interest in this. For neurology residents who are interested in this as a component of or maybe a focus of their career, what would you recommend to them? How should they go about this? Dr Robinson: Yes, it used to be that every neurology resident interested in palliative care would call me or email me or send me a message, but now there are so many that I can't keep up. We're excited about the growing number of people interested in neuropalliative care. What I would say to those people is that you can really try to hone your skills by, for instance, doing a rotation with the palliative care team at your hospital, if there is one. If there isn't one, you might even ask to spend some time with the local hospice agency, which may be helpful to you. If you're attending some of the national meetings---for instance, the American Academy of Neurology meeting---you may want to go to a course and learn a little bit about palliative care. There are a couple that are offered every year. There is an education opportunity for education in palliative and end-of-life care as well. And so, there are a number of resources that you can find in addition to this issue of Continuum as well. Dr Jones: I find it gratifying that trainees ask about this. And I'm sorry, I think I've probably sent a bunch of trainees your way for advice about this, and you've been incredibly generous with your time and expertise. So, I find it very gratifying that our neurology trainees are interested in this area, because it's an important area of medicine. It's also probably a challenging practice just from the cognitive load and the emotional load of caring for patients who are moving through a progressive illness. What is your thinking about how to have a sustainable career in palliative medicine? What is your approach to that? Is it for everyone? Dr Robinson: Yeah, the issue with palliative care is that we do see some very challenging situations, and frankly some very sad situations. But I actually love what I do because I think that we're helping patients and their family members during very, very difficult times. I feel like this is why I went to medical school, to try to be there for people when they need me the most. The way that I think about it is, the patients and family members will be going through this anyway. We're trying to help improve their quality of life as they're going through it. And what you might find interesting is that these patients are so grateful. And their loved ones, they're so grateful. Even if they're nearing the end of life, just to have someone who's helping them see that, for instance, the pain could be better, or that they have more resources for the loved ones to be able to take care of them. And so, I think that helps sustain us, realizing that we are really having a positive benefit on the patients and also their family members. Dr Jones: Well, I think that's a great point to end on. And these are patients who need help. Even if we don't have a curative therapy, they do need support. And that's an important service and a function and an important facet of our profession. So, Dr Robinson, I want to thank you for joining us, and I want to thank you for such a great discussion of neuropalliative care. I learned a lot from our conversation today. I've learned a lot reading the articles and the experts that you put together. This is an important topic. I'm really grateful to you to having assembled this team of expert authors and put together an issue that I think will be really important for not only our junior readers, but also our more experienced subscribers as well. Dr Robinson: Thank you, Dr Jones, for the opportunity. Dr Jones: Again, we've been speaking with Dr Maisha Robinson, Guest Editor of Continuum's most recent issue and first issue fully dedicated to neuropalliative care. Please check it out, and thank you to our listeners for joining today. Dr Monteith: This is Dr Teshamae Monteith, Associate Editor of Continuum Audio. If you've enjoyed this episode, you'll love the journal, which is full of in-depth and clinically relevant information important for neurology practitioners. Use the link in the episode notes to learn more and subscribe. Thank you for listening to Continuum Audio.

About Ben Forrest:Ben Forrest is the CEO of Olio, a care coordination technology company focused on improving collaboration among payers, health systems, and post-acute providers for the most complex patients. With a 14-year background in the medical device industry, Ben saw firsthand how fragmented workflows and siloed care settings created barriers to quality and efficiency—an insight that led him to build Olio. Under his leadership, the platform now enables real-time engagement across hundreds of care sites, helping organizations reduce administrative burden, improve outcomes, and better manage medical spend. Ben is dedicated to bringing modern software, thoughtful workflows, and emerging AI capabilities to one of healthcare's most persistent challenges: truly connected care.Things You'll Learn:Care coordination is deeply fragmented, especially for complex patients moving across hospitals, skilled nursing, home health, behavioral health, and other community settings.Olio's platform connects payers, health systems, and post-acute providers in one shared workflow, enabling daily engagement and reducing administrative burden.Better downstream provider engagement directly improves outcomes and lowers costs, especially in Medicare Advantage, Medicaid, ACO, and bundled payment environments.Scaling coordination statewide requires more than EMRs; it requires workflow technology that ensures transparency, accountability, and consistent communication across 100+ care sites.Economics drive engagement: care coordination intensity increases where organizations hold risk or face pressure to manage total medical spend.The future of AI in care coordination is still emerging, and smart companies will focus on doing one operational problem exceptionally well before expanding.Payers will face mounting pressure to reduce medical spend, making true care coordination, not just better authorization practices, a strategic necessity.Olio was born from the realization that healthcare excels at delivering care in silos but struggles when patients move between settings, especially under value-based models.Resources:Connect with and follow Ben Forrest on LinkedIn.Follow Olio on LinkedIn and discover their website. 

Each week, Continuum Ag CEO & Founder Mitchell Hora breaks down what's happening in the world of Carbon Intensity (CI).In this episode, Mitchell dives into Continuum Ag's MRV Protocol — what it means for measuring and verifying CI — and shares the story of how Continuum Ag got its start, evolved through soil health and data, and became a leader in the 45Z and low-carbon ag space.

Dystrophinopathies are heritable muscle disorders caused by pathogenic variants in the DMD gene, leading to progressive muscle breakdown, proximal weakness, cardiomyopathy, and respiratory failure. Diagnosis and management are evolving areas of neuromuscular neurology. In this episode, Kait Nevel, MD, speaks with Divya Jayaraman, MD, PhD, an author of the article "Dystrophinopathies" in the Continuum® October 2025 Muscle and Neuromuscular Junction Disorders issue. Dr. Nevel is a Continuum® Audio interviewer and a neurologist and neuro-oncologist at Indiana University School of Medicine in Indianapolis, Indiana. Dr. Jayaraman is an assistant professor of neurology and pediatrics in the division of child neurology at the Columbia University Irving Medical Center in New York, New York. Additional Resources Read the article: Dystrophinopathies Subscribe to Continuum®: shop.lww.com/Continuum Earn CME (available only to AAN members): continpub.com/AudioCME Continuum® Aloud (verbatim audio-book style recordings of articles available only to Continuum® subscribers): continpub.com/Aloud More about the American Academy of Neurology: aan.com Social Media facebook.com/continuumcme @ContinuumAAN Host: @IUneurodocmom Full episode transcript available here Dr Jones: This is Dr Lyell Jones, Editor-in-Chief of Continuum. Thank you for listening to Continuum Audio. Be sure to visit the links in the episode notes for information about earning CME subscribing to the journal, and exclusive access to interviews not featured on the podcast. Dr Nevel: Hello, this is Dr Kate Nevel. Today I'm interviewing Dr Divya Jayaraman about her article on dystrophinopathies, which she wrote with Dr Partha Ghosh. This article appears in the October 2025 Continuum issue on muscle and neuromuscular junction disorders. Divya, welcome to the podcast, and please introduce yourself to the audience. Dr Jayaraman: Thank you so much, Dr Nevel. My name is Divya, and I am an assistant professor of Neurology and Pediatrics at Columbia University Irving Medical Center, and also an attending physician in the Pediatric Neuromuscular program there. In that capacity, I see patients with pediatric neuromuscular disorders and also some general pediatric neurology patients and also do research, primarily clinical research and clinical trials on pediatric neuromuscular disorders. Dr Nevel: Wonderful. Thank you for sharing that background with us. To set us on the same page for our discussion, before we get into some more details of the article, perhaps, could you start with some definitions? What comprises the dystrophinopathies? What are some of the core features? Dr Jayaraman: So, the dystrophinopathies, I like that term because it is a smaller subset from the muscular dystrophies. The dystrophinopathies are a spectrum of clinical phenotypes that are all associated with mutations in the DMD gene on chromosome X. So, that includes DMD---or, Duchenne muscular dystrophy---, Becker muscular dystrophy, intermediate muscular dystrophy (which falls in between the two), dilated cardiomyopathy, asymptomatic hyperCKemia, and manifesting female carriers. In terms of the core features of these conditions, so, there's some variability, weakness being prominent in Duchenne and also Becker. The asymptomatic hyperCKemia, on the other hand, may have minimal symptoms and might be found incidentally by just having a high CK on their labs. They all will have some degree of elevated CK. The dilated cardiomyopathy patients, and also the Becker patients to a lesser degree, will have cardiac involvement out of proportion to skeletal muscle involvement, and then the manifesting carriers likewise can have elevated CK and prominent cardiac involvement as well as some milder weakness. Dr Nevel: Now that we have some definitions, for the practicing neurologists out there, what do you think is the most important takeaway from your article about the dystrophinopathies? Dr Jayaraman: I like this question because it suggests that there's something that, really, any neurologist could do to help us pick up these patients sooner. And the big takeaway I want everyone to get from this is to check the CK, or creatine kinase, level. It's a simple, cheap, easy test that anyone can order, and it really helps us a lot in terms of setting the patient on the diagnostic odyssey. And in terms of whom you should be thinking about checking a CK in, obviously patients who present with some of the classic clinical features of Duchenne muscular dystrophy. This would include young boys who have toe walking, as they're presenting, sign; or motor delayed, delayed walking. They may have calf hypertrophy, which is what we say nowadays. You might have seen calf pseudohypertrophy in your neurology textbooks, but we just say calf hypertrophy now. Or patients can often have a Gowers sign or Gowers maneuver, which is named after a person called Gowers who described this phenomenon where the child will basically turn over and use their hands on the floor to stand up, usually with a wide-based gait, and then they'll sort of march their hands up their legs. That's the sort of classic Gowers maneuver. There are modified versions of that as well. So, if anyone presents with this classic presentation, for sure the best first step is to check a CK. But I would also think about checking a CK for some atypical cases. For example, any boy with any kind of motor or speech delay for whom you might not necessarily be thinking about a muscle disorder, it's always good practice to check a CK. Even a boy with autism for whom you may not get a good clinical exam. This patient might present to a general pediatric neurology clinic. I always check a CK in those patients, and you'll pick up a lot of cases that way. For the adult folks in particular, the adult neurologist, a female patient could show up in your clinic with asymptomatic hyperCKemia. And I think it's an important differential to think about for them because this could have implications not just for their own cardiac risks, but also for their family planning. Dr Nevel: So, tell us a little bit more about the timing of diagnosis. Biggest takeaway: check a CK if this is anywhere on your radar, even if somewhat of an atypical case. Why is it so important to get kiddos started on that diagnostic odyssey, as you called it, early? Dr Jayaraman: This is especially important for kids because if they especially get a Duchenne muscular dystrophy diagnosis, you might be making them eligible for treatments that we've had for some time, and also treatments that were not available earlier that hinge on making that diagnosis. So, for example, people may be skeptical about steroids, but there's population data to suggest that initiation and implementation of steroids could delay the onset of loss of ambulation as much as three years. So, you don't want to deprive patients of the chance to get that. And then all the newer emerging therapies---which we'll be talking about later, I'm sure---require a Duchenne muscular dystrophy diagnosis. So, that's why it's so important to check a CK, have this on your radar, and then get them to a good specialist. Dr Nevel: I know that you alluded already, or shared a few of the kind of exam paroles or findings among patients with dystrophinopathy. But could you share with us a little bit more how you approach these patients in the clinic who are presenting with muscle weakness, perhaps? And how do you approach this or think about this in terms of ways to potentially differentiate between a dystrophinopathy versus another cause of motor weakness or delay? Dr Jayaraman: It's helpful to think through the neuraxis and what kinds of disorders can present along that neuraxis. A major differential that I'm always thinking about when I'm seeing a child with proximal weakness is spinal muscular atrophy, which is a genetic anterior horn cell disorder that can also present in this age group. And some of the key differences there would be things like reflexes. So, you should have dropped reflexes in spinal muscular atrophy. In DMD, surprisingly, they might have preserved Achilles reflexes even if their patellar reflexes are lost. It may only be much later that they go on to lose their Achilles reflex. So, if you can get an Achilles reflex, that's quite reassuring, and if you cannot, then you need to be thinking about spinal muscular atrophy. They can both have low muscle tone and can present quite similarly, including with proximal weakness, and can even have neck flexion weakness. So, this is an important distinction to make. The reason for that is, obviously there are treatments for both conditions, but for spinal muscular atrophy, timing is very, very important. Time is motor neurons, so the sooner you make that diagnosis the better. Other considerations would be the congenital muscular dystrophies. So, for those that they tend to present a lot younger, like in infancy or very early on, and they can have much, much higher CKS in that age range than a comparable Duchenne or Becker muscular dystrophy patient. They can also have other involvement of the central nervous system that you wouldn't see in the dystrophinopathies, for example. My mnemonic for the congenital muscular dystrophies is muscle-eye-brain disease, which is one of the subtypes. So, you think about muscle involvement, eye involvement, and brain involvement. So, they need an ophthalmology valve. They can have brain malformations, which you typically don't see in the dystrophinopathies. I think those are some of the major considerations that I have. Obviously, it's always good to think about the rest of the neuraxis as well. Like, could this be a central nervous system process? Do they have upper motor neuron signs? But that's just using all of your exam tools as a neurologist. Dr Nevel: Yeah, absolutely. So, let's say you have a patient in clinic and you suspect they may have a dystrophinopathy. What is your next diagnostic step after your exam? Maybe you have an elevated CK and you've met with the patient. What comes next? Dr Jayaraman: Great question. So, after the CK, my next step is to go to genetics. And this is a bit of a change in practice over time. In the past we would go from the CK to the muscle biopsy before genetic testing was standard. And I think now, especially in kids, we want to try and spare them invasive procedures where possible. So, genetic testing would be the next step. There are a few no-charge, sponsored testing programs for the dystrophinopathies and also for some of the differential diagnosis that I mentioned. And I think we'll be including links to websites for all of these in the final version of the published article. So, those are a good starting point for a genetic workup. It's really important to know that, you know, deletions and duplications are a very common type of mutation in the DMD gene. And so, if you just do a very broad testing, like whole exome, you might miss some of those duplications and deletions. And it's important to include both checking for duplications and deletions, and also making sure that the DMD gene is sequenced. So always look at whatever genetic test you're ordering and making sure that it's actually going to do what you want it to do. After genetics, I think that the sort of natural question is, what if things are not clear after the genetics for some reason? We still use biopsy in this day and age, but we save it for those cases where it's not entirely clear or maybe the phenotype is a little bit discordant from the genotype. So, for mutations that disrupt the reading frame, those tend to cause Duchenne muscular dystrophy, whereas mutations that preserve the reading frame tend to cause Becker muscular dystrophy. There are some important exceptions to this, which is where muscle biopsy can be especially helpful in sorting it out. So, for example, there are some early mutations early in the DMD gene where, basically, they find an alternate start codon or an initiation codon to continue with transcription and translation. So, you end up forming a largely functional, somewhat truncated protein that gives you more of a milder Becker phenotype. On the other hand, you can have some non-frameshift or inframe mutations that preserve the reading frame, but because they disrupt a very key domain in the protein that's really crucial for its function, you can actually end up with a much more severe Duchennelike phenotype. So, for these sorts of cases, you might know a priori you're dealing with them, but might just be a child who is who you think has DMD has a mutation that's showed up on testing. There isn't enough in the literature to point you one way or another, but they look maybe a little milder than you would expect. That would be a good kid to do a biopsy in because there are treatment decisions that hinge on this. There are treatments that are only for Duchenne that someone with a milder phenotype would not be eligible for. Dr Nevel: So, that kind of stepwise approach, but maybe not all kids need a muscle biopsy is what I'm hearing from you. If it's a mutation that's been well-described in the literature to be fitting with Duchenne, for example. Dr Jayaraman: Absolutely. Dr Nevel: So, after you confirm the diagnosis through genetic testing---and let's say, you know, whether or not you do a muscle biopsy or not, after you know the diagnosis is a dystrophinopathy---how do you counsel the families and your patients? What are the most important points to relay to families, especially in that initial phase where the diagnosis is being made? Dr Jayaraman: This is a lot of what we do in pediatric neurology in general, right? So, I actually picked up this approach from the pediatric hematology oncology specialists at Boston Children's. They had this concept of a day-zero conversation, which is the day that you disclose the life-changing diagnosis or potentially, at some point, terminal diagnosis to a family. And some of the key components of that are a not beating around the bush, telling them what the diagnosis is, and then letting them have whatever emotional response they're going to have in the moment. And you may not get much further than that, but honestly, you want them to take away, this is what my child has. I did not do anything to cause this, nor could I have done anything to prevent this. Because often for these genetic conditions, there's a lot of guilt, a lot of parental guilt. So, you want to try and assuage that as much as possible. And then to know that they're not going to be alone on this journey; that, you know, they don't have to have it all figured out right then, but we can always come back and answer any questions they have. There's going to be a whole team of specialists. We're going to help the family and the kid manage this condition. Those are sort of my big takeaways that I want them to get. Dr Nevel: Right. And that segues into my next question, which is, who is part of that team? I know that these teams that help take care of people with dystrophinopathies and other muscle disorders can be very large teams that span multiple specialists. Can you talk a little bit more about that for this group of patients? Dr Jayaraman: Of course. So, the neuromuscular neurologist, really, our role is in coordinating the diagnosis, the initiation of any disease-specific treatments, and coordinating care with a whole group of specialists. So, we're sort of at the center of that, but everyone else is equally important. So, the other specialists include physical therapists; occupational therapists; rehab doctors or physiatrists; orthotists who help with all of the many braces and other devices that they might need, wheelchairs; pulmonology, of course, for managing the respiratory manifestations of this. It becomes increasingly important over time, and they are involved early on to help monitor for impending respiratory problems. Cardiac manifestations, this is huge and something that you should be thinking about even for your female carriers, the mother of the patient you're seeing in the clinic, or your patient who comes to adult clinic with asymptomatic hyperCKemia. if you end up making a diagnosis of DMD carrier for those patients, or if you make a Becker diagnosis, the cardiac surveillance is even more important because the cardiac involvement can be out of proportion to the skeletal muscle weakness. And of course, extremely important for the Duchenne patients as well. Endocrinologists are hugely important because in the course of treating patients with steroids, we end up giving them a lot of iatrogenic endocrinologic complications. Like they might have delayed puberty, they might have loss of growth, of height; and of course metabolic syndrome. So, endocrinology is hugely important. They're also important in managing things like fracture prevention, osteoporosis, prescribing bisphosphonates if necessary. Nutrition and GI are also important, not just later on when they might need assistance to take in nutrition, whether that's through tube feeds, but also earlier on when we're trying to manage the weight. Orthopedics, of course, for the various orthopedic complications that patients develop. And then finally, a word must be said for social work and behavioral and mental health specialists, because a lot of this patient population has a lot of mental health challenges as well. Dr Nevel: After you give the diagnosis, you've counseled the patient and families and you've had those kind of initial phase discussions, the day-zero discussion, when you start getting into discussions or thoughts about management, disease-specific medication. But what are the main categories of the treatment options, and maybe how do you kind of approach deciding between treatment options for your patients? Dr Jayaraman: So, there are two broad categories that I like to think about. So, one is the oral corticosteroids and oral histone deacetylase, or HDAC inhibitors, which share the common characteristic that they are non-mutation specific. And within corticosteroids, patients now have a choice between just Prednisone or Prednisolone, or Deflazacort or Vermilion. The oral HDAC inhibitors are newly FDA-approved as a nonsteroidal therapy in addition to corticosteroids in DMD patients above six years of age. I would say we're in the early phase of adoption of this in clinical practice. And then the other big category of treatment options would be the genetic therapies as a broad bucket, and this would include gene therapy or gene replacement therapy, of which the most famous is the microdystrophin gene therapy that was FDA-approved first on an accelerated approval basis for ages four to eight, and then a full approval in that age group as well as an accelerated approval for all comers, essentially, with DMD. This is obviously controversial. Different centers approach this a bit differently. I think our practice at our site has been to focus on the ambulatory population, just thinking about risk versus benefit, because the risks are not insignificant. So really this is something that should be done by experienced sites that have the bandwidth and the wherewithal to counsel patients through all of this and to manage complications as they arise with regular monitoring. And then another class that falls within this broader category would be the Exon-skipping therapies. So as the name suggests, they are oligonucleotides that cause an Exon to be skipped. The idea is, if there is a mutation in a particular Exon that causes a frame shift, and there's an adjacent Exon that you can force skipping of, then the resulting protein, when you splice the two ends together, will actually allow restoration of the reading frame. I think the picture I want to paint is that there's a wide range of options that we present to families, not all of which everyone will be eligible for. And they all have different risk profiles. And I really think the choice of a particular therapy has to be a risk-benefit decision and a shared decision-making process between the physician and the family. Dr Nevel: What is going on in research in this area? And what do you think will be the next big breakthrough? I know before we started the recording you had mentioned that there's a lot of things going on that are exciting. And so, I'm looking forward to hearing more. Dr Jayaraman: Of course. So, I'll be as quick as I can with this. But I mentioned that next-generation Exon skipping therapies, I think the hope is that they will be better at delivering the Exon skipping to the target tissue and cells and that they might be more efficacious. I'm also excited about next-generation gene therapies that might target muscle more specifically and hopefully reduce the off-target effects, or combination use of gene therapies with other immunosuppressive regimens to improve the safety profile and maybe someday allow redosing, which we cannot do currently. Or potentially targeting the satellite cells, which are the muscle stem cells, again, to improve the long term durability of these genetic therapies. Dr Nevel: That's great, thank you for sharing. Thank you so much for talking to me today about your article. I really enjoyed learning more about the dystrophinopathies. Today I've been interviewing Dr Divya Jayaraman about her article on the dystrophinopathies, which she wrote with Dr Partha Ghosh. This article appears in the October 2025 Continuum issue on muscle and neuromuscular junction disorders. Please be sure to check out the Continuum Audio episodes from this and other issues. Also, please read the Continuum articles for more details than what we were able to get to today during our discussion. Thank you, as always, so much to the listeners for joining us today, and thank you, Divya, for sharing all of your knowledge with us today. Dr Jayaraman: Thank you so much for having me on the podcast. Dr Monteith: This is Dr Teshamae Monteith, Associate Editor of Continuum Audio. If you've enjoyed this episode, you'll love the journal, which is full of in-depth and clinically relevant information important for neurology practitioners. Use the link in the episode notes to learn more and subscribe. AAN members, you can get CME for listening to this interview by completing the evaluation at continpub.com/audioCME. Thank you for listening to Continuum Audio.

Cedric Chin says comparisons of our current AI *maybe-bubble* to the dot-com bubble and the 2008 GFC are limiting, Matthew Prince does a post-mortem on last week's Cloudflare outage, "hl" is a fast / powerful log viewer for humans, Enthusiast Guy's Continuum 93 is a fantasy computer emulator, and a list of things that aren't doing the thing.

Cedric Chin says comparisons of our current AI *maybe-bubble* to the dot-com bubble and the 2008 GFC are limiting, Matthew Prince does a post-mortem on last week's Cloudflare outage, "hl" is a fast / powerful log viewer for humans, Enthusiast Guy's Continuum 93 is a fantasy computer emulator, and a list of things that aren't doing the thing.

On this week's episode of our show, Captain Ingle and I set a course for the 24th century and the continuing voyages of the USS Enterprise-D. This time around, intergalactic troublemaker Q has been cast out by the Continuum and is forced to live as a mortal human being. Seeking asylum aboard the enterprise, Captain Picard and crew must deal with their now-humbled adversary. Join us as we go boldly!

Cedric Chin says comparisons of our current AI *maybe-bubble* to the dot-com bubble and the 2008 GFC are limiting, Matthew Prince does a post-mortem on last week's Cloudflare outage, "hl" is a fast / powerful log viewer for humans, Enthusiast Guy's Continuum 93 is a fantasy computer emulator, and a list of things that aren't doing the thing.

Key Takeaways:Supporters engage for a reason, a season, or a lifetime, each bringing unique value. Instead of expecting long-term loyalty from everyone, recognize the natural ebb and flow. Gratitude for every contribution keeps the relationship healthy and grounded.Tourists, seasonal residents, and townies each play a meaningful role in the ecosystem. One-time donors bring energy, visibility, and new connections when they matter most. Long-term supporters reveal themselves through aligned values and deeper engagement.Lasting relationships grow through purpose, connection, and involvement beyond giving. Inviting donors into stories, conversations, or behind-the-scenes roles builds ownership. When people feel seen and included, loyalty naturally strengthens and expands.Not every donor will stay forever, and that is part of a healthy pipeline. Letting go with appreciation frees energy to invest in aligned relationships. Focusing on shared values ensures every interaction remains meaningful and mutual. “Our job is to give them meaningful experience while they're with us and release them with gratitude when they're ready to go.” “Every donor plays a role in your ecosystem. You know, tourists bring energy and visibility, townies bring depth and sustainability, and there's space in between them, where just the relationships involved.” “Relationship first, money will follow that. Build belonging, not just giving.” - Maryanne Dersch   Let's Work Together to Amplify Your Leadership + Influence1. Group Coaching for Nonprofit LeadersWant to lead with more clarity, confidence, and influence? My group coaching program is designed for nonprofit leaders who are ready to communicate more powerfully, navigate challenges with ease, and move their organizations forward. 2. Team Coaching + TrainingI work hands-on with nonprofit teams to strengthen leadership, improve communication, and align around a shared vision. Whether you're growing fast or feeling stuck, we'll create more clarity, collaboration, and momentum—together. 3. Board Retreats + TrainingsYour board has big potential. I'll help you unlock it. My engaging, no-fluff retreats and trainings are built to energize your board, refocus on what matters, and generate real results.Get your free starter kit today at www.theinfluentialnonprofit.comConnect with Maryanne about her coaching programs:https://www.courageouscommunication.com/connect Book Maryanne to speak at your conference:https://www.courageouscommunication.com/nonprofit-keynote-speaker

Continuum is solving the multi-party return problem in B2B supply chain—a transaction involving distributors, manufacturers, and end users that previously took 30-45 days and now completes in 30-45 seconds. In this episode of Category Visionaries, we sat down with Alex Witcpalek, CEO and Founder of Continuum, to unpack how he's building what he calls "reverse EDI" in a market of 1.5 million distribution and manufacturing companies across North America. After 13 years selling technology into this space, Alex is now growing 8x year-over-year by turning customers into the primary acquisition channel through network effects. Topics Discussed: Why multi-party returns require replicating order management, warehouse management, and procurement systems simultaneously The tactical sequencing of building network businesses: solving for independent value, achieving critical mass, then activating network effects How Continuum navigates deep ERP integrations (SAP, Oracle, NetSuite, Epicor) plus bespoke business logic across multiple supply chain tiers Facebook retargeting, BDR outbound, events, and customer referrals as the four channels driving growth in a non-PLG market Why business model differentiation is the only remaining moat when technical barriers collapse Building domain expertise distribution systems using AI-powered LMS fed by sales call recordings GTM Lessons For B2B Founders: Choose problems where you can capture 100% of addressable market, not fractional share: Alex deliberately avoided competing in CRM, sales order automation, or accounts payable—categories where even dominant players cap at 25-30% market penetration. Instead, he targeted multi-party reverse logistics, a greenfield problem no one else was solving. This strategic choice eliminates competitive displacement risk and allows every prospect conversation to focus on change management rather than competitive differentiation. Founders should map their TAM against competitive saturation: markets where you can own the entire category create fundamentally different growth trajectories than fighting for fragments. Sequence network businesses: independent value → critical mass → network activation: Alex was told by investors 18 months in that network effects "weren't going to work." His insight: "When you don't have a network, you don't sell the network. It's just in your plans and how you're building." Continuum sold P&L impact, manual labor reduction, and customer experience improvements to early adopters while building network infrastructure invisibly. Only after achieving density in specific verticals (HVAC, electrical, plumbing) did they surface the network value proposition. This sequencing prevents the cold-start problem—founders building marketplace or network businesses must design standalone value that makes the first 100 customers successful independent of network density. Exploit high pain thresholds in legacy industries as competitive barriers: Supply chain companies accept 30-45 day return cycles, manual warranty claims on paper, and playing "guess who" by phone to find inventory across distributor branches. Alex notes they have "extremely high pain threshold" from living with broken systems for decades. While this creates longer education cycles, it also means competitors won't enter (too hard) and once you prove ROI, switching costs become prohibitive. Founders should reframe customer inertia: industries tolerating obvious inefficiencies offer category creation opportunities with built-in moats, not just sales friction. Business model architecture is the only defensible moat—technical differentiation is dead: Alex is building his own e-signature platform (Continue Sign) and AI LMS using vibe coding to prove technical moats no longer exist. Continuum's defensibility comes entirely from network lock-in: displacing them requires disconnecting manufacturers like Carrier, Daikin, and Bosch plus their entire distributor ecosystems simultaneously. He references EDI (1960s technology still dominant today) as proof that network effects create permanent advantages. Founders must architect switching costs, network density, or proprietary data advantages into their business model—technology alone provides zero protection in the AI era. Match channel strategy to actual ICP behavior, not SaaS conventions: Continuum's top lead source is customer-driven network growth—distributors recruiting manufacturers and vice versa. Facebook retargeting works because their 50+ year-old supply chain buyers "are trying to comment on their grandkids' pictures," not scrolling LinkedIn. BDR outbound still delivers high win rates in an industry where business happens on handshakes, making events critical. This channel mix would fail for PLG products but works perfectly for enterprise cycles with $40K ACVs and 90-day sales processes. Founders should ethnographically research where their specific buyers actually spend attention rather than defaulting to LinkedIn, content marketing, or PLG based on what works in adjacent categories. Use 90-day enterprise cycles and multi-stakeholder complexity as qualification, not friction: Continuum runs enterprise sales motions for $40K deals because multi-party returns touch 16 constituents across sales, customer service, fleet, supply chain, warehouse, purchasing, and finance. Rather than trying to simplify buying, Alex uses this complexity as a filter—companies willing to coordinate VP of Supply Chain, COO, and CFO alignment are serious buyers. He layers three value propositions (P&L impact, labor reduction, customer experience) knowing different stakeholders weight them differently. Founders selling into complex environments should embrace multi-threading as a qualification mechanism that improves win rates and reduces churn, not overhead to eliminate. //  Sponsors:  Front Lines — We help B2B tech companies launch, manage, and grow podcasts that drive demand, awareness, and thought leadership. www.FrontLines.io The Global Talent Co. — We help tech startups find, vet, hire, pay, and retain amazing marketing talent that costs 50-70% less than the US & Europe. www.GlobalTalent.co // Don't Miss: New Podcast Series — How I Hire  Senior GTM leaders share the tactical hiring frameworks they use to build winning revenue teams. Hosted by Andy Mowat, who scaled 4 unicorns from $10M to $100M+ ARR and launched Whispered to help executives find their next role. Subscribe here: https://open.spotify.com/show/53yCHlPfLSMFimtv0riPyM  

11/12/25 Filmmaker Blake Calhoun joined Mike and cohosts, actresses Presley Richardson and Kennedy Celeste on episode to talk about his Indie film 'Casey Makes a Mixtape.' Blake is a Texas-based filmmaker with a track record of creating bold, independent work. He has produced and directed feature films and digital series, including the award-winning shows Pink and Continuum.  His work spans both indie and studio collaborations: he directed and produced Exposed for Warner Bros. Television alongside executive producer McG, and partnered with New York Times bestselling author Rachel Caine, as well as Felicia Day's Geek & Sundry, and also Legendary Entertainment to bring the popular young adult series Morganville to life. With a passion for innovative storytelling, Blake continues to push the boundaries of independent filmmaking. Please support Indie Films! Follow Blake on Instagram @watchblake Enjoy the Podcast!   

One Continuum of Growth (Chayei Sarah 5786)

This week, we're joined by Mat Made founder Kenny Kim! In this episode, Kenny discusses how to build deeper connections and stronger communities through Jiu-Jitsu. Topics include: creating lasting engagement at gyms, growing authentic online followings, using storytelling to inspire others, overcoming imposter syndrome, building consistency, and leading with purpose. Follow Kenny on Instagram:https://www.instagram.com/kennykimbjjThe Jiu-Jitsu Millionaire, by Kenny Kim:https://a.co/d/fZghu0aMat Made (book), by Kenny Kim:https://amazon.com/dp/B09231HG4RMat Made show & gym finder:https://matmade.comTrain at Kenny Kim BJJ in Marietta, GA:https://kennykimbjj.comResources discussed in this episode:The Influence Continuum:https://freedomofmind.com/cult-mind-control/influence-continuumMental models discussed in this episode:Continuum of Motivationhttps://bjjmentalmodels.com/continuum-of-motivationInertiahttps://bjjmentalmodels.com/inertiaImpostor Syndromehttps://bjjmentalmodels.com/impostor-syndromeTimeframe Paradoxhttps://bjjmentalmodels.com/timeframe-paradoxThird Placehttps://bjjmentalmodels.com/third-placePermission Paradoxhttps://bjjmentalmodels.com/permission-paradoxAdvice Paradoxhttps://bjjmentalmodels.com/advice-paradoxConsistencyhttps://bjjmentalmodels.com/consistency⬆️ LEVEL UP with BJJ Mental Models Premium!The world's LARGEST library of Jiu-Jitsu audio lessons, our complete podcast network, online coaching, and much more! Your first week is free:https://bjjmentalmodels.comNeed more BJJ Mental Models?Get the legendary BJJMM newsletter:https://bjjmentalmodels.com/newsletterLearn more mental models in our online database:https://bjjmentalmodels.com/databaseFollow us on social:https://instagram.com/bjjmentalmodelshttps://threads.com/@bjjmentalmodelshttps://bjjmentalmodels.bsky.socialhttps://youtube.com/@bjjmentalmodelsMusic by Enterprize:https://enterprize.bandcamp.com⚠️ NEW course from BJJ Mental Models!MINDSET FOR BETAS, our new Jiu-Jitsu audio course with Rob Biernacki, is now available on BJJ Mental Models Premium! For a limited time, get your first month FREE at:https://bjjmentalmodels.com/beta

In this episode, Novella W. Thompson, MBA, MA, ALM-C, FACHE, Hospital Administrator for Population Health, Post-Acute Care, and Continuum Home Health at UVA Health University Medical Center, shares how UVA Health is realizing its vision for integrated, accessible care beyond hospital walls and offers powerful leadership insights on innovation, collaboration, and empowering teams to drive better patient outcomes.

In this episode, we sit down with Michelle Urben, Managing & General Partner of the Synergos Fund, an innovative firm that is challenging the traditional VC model. They've launched a "continuum fund," a new structure designed to support transformative companies through their entire lifecycle, from seed to commercialization.We dive deep into why they "don't invest for an exit," their mission to build "very durable companies that we want to own forever," and how they are tackling some of the world's biggest problems, from the global energy demand to recycling spent nuclear fuel.⭐ Sponsored by Podcast10x - Podcasting agency for VCs - https://podcast10x.comSynergos Fund - https://www.synergosholdings.com/general-7Michelle Urben on LinkedIn - https://www.linkedin.com/in/michelle-boquiren-urben-0538852

In this episode, we introduce the Risk Control Continuum - a practical, evidence-based framework for managing risk in the backcountry. He explores how environmental, psychosocial, and operational hazards trigger physiological, functional, and cognitive drift, leading to cascades of failure. Listeners learn the HEAT and ECG checklists for detecting and reversing control loss, and how structured decision gates and route planning maintain safety, awareness, and performance in adverse environments. To view the shownotes for this episode of the Backpacking Light Podcast, click here.

This episode explores the Buddhist concept of bhavaṅga, or the “life continuum” — the stream of consciousness that connects one moment to the next, and even one life to another. It explains how our unique personalities at birth may arise from past lives, carried through this subtle flow of awareness.We also look at how consciousness operates between wakefulness and deep sleep, and how every perception — seeing, hearing, thinking — unfolds through a rapid series of thought moments. Using the vivid “falling mango” analogy, we uncover how these moments shape our experiences and generate karma. Tune in to understand how the mind's hidden processes influence who we are and the path our lives take.YouTube Video LinkYouTube Channel Link Website:www.satipatthana.caDonations and Memberships

Hi Listeners. I'd love to hear from you. Send an email to Janet@jesteinkamp. It is not possible to respond to your Fan Mail posts directly.Hi Listeners, Welcome to this safe, judgment-free space to find support, explore new perspectives, and better understand your estrangement circumstances. Regardless of where your relationship sits on the Continuum of Estrangement, you'll find encouragement and reassurance. If you've ever wondered how to move between being a mom to your adult child and a grandma to their children—especially when estrangement or tension is involved—this episode is for you.I'm Dr. Janet Steinkamp, and in this episode I will help you understand and explore the powerful differences between your role as a mom to your adult child and your role as grandma. I'll provide reassurance that each role matters and how clear boundaries can actually strengthen family bonds. You'll learn how to move (flex) back and forth between supporter and emotional anchor to a safe haven for grandchildren. We explore ways to rebuild trust after distance seeps in or silence becomes a fact.Finally, we learn how to nurture relationships with your grandchildren without undermining your adult child's confidence and trust. And! Not feel exploited or taken for granted.Grab your notebook, get comfortable, and let's unpack what it means to love well in both roles—so you can grow stronger and find comfort knowing you're not alone.Related Episodes:When Our Adult Children Ask for Space: What It Really MeansUnderstanding Emotional Boundaries with Estranged Adult ChildrenHealing the Hurt: How to Rebuild Trust After EstrangementHow to Communicate Without Pushing Your Child AwaySupport the showFor more information, please visit:  https://www.WhenOurAdultChildrenWalkAway.com to find resources, strategies, and tips to prepare for repair! I'd love to hear from you directly. Send an email to Janet@jesteinkamp. ***It is not possible for me to respond to your Fan Mail posts directly.#FamilyEstrangementPodcast #ParentReconnection #EstrangedAdultChildren #ParentChildReunification #ReconnectingWithMyChild #EstrangementExpertThe continuum of estrangement discussed today can be found at https://www.togetherestranged.org/levels-of-estrangement.The stories, examples, reflections, and perspectives shared in this podcast are based on my professional work as an estrangSupport the showFor more information, please go to https://www.WhenOurAdultChildrenWalkAway.com to find resources, strategies and tips to prepare to repair! The continuum of estrangement discussed today can be found at https://www.togetherestranged.org/levels-of-estrangement. The stories, examples, reflections, and perspectives shared in this podcast are based on my professional work as an estrangement coach and my personal estrangement journey. Any examples, characters, or stories referenced are either drawn from my own lived experience or represent a composite of multiple real-life situations shared with me over time. The intention of this podcast is not to accuse, label, or defame any individual but to provide insight, validation, and support for those navigating the complexities of family estrangement. All opinions expressed are my own and are shared with you, the listener, from a place of healing and learning.

In this podcast, Series 4, Chapter 5, Dr. Barsuk interviews Dr. Diane Wayne, professor of medicine in the Departments of Medicine and Medical Education and former Internal Medicine Program Director and Vice Dean of Education at Northwestern University Feinberg School of Medicine.  Dr. Wayne  is currently the Chief Medical Officer and Senior Vice President at Northwestern Memorial Hospital.  Drs. Barsuk and Wayne discuss how simulation-based mastery learning can be used to train clinicians across the entire spectrum of students, residents, fellows, and practicing clinicians.

Approximately 20% of African Americans experienced a mental health condition over the past year, and 5% had a serious mental illness. Where do you turn for help when a loved one experiences a mental health crisis? We talk with mental health professionals about the continuum of care available in Norfolk, and what you need to know to help those you love.

October 27, 2025Today's episode is a simple grounding practice using imagery and sound. Sometimes (like always) we just need to get out of our heads and back into our bodies and souls. We will assess where we are on the continuum of groundedness. Our reading for today is an excerpt from the poem Remember fromJoy Harjo, a Native American U.S. Poet Laureate from the Muscogee Nation.Remember, Joy HarjoRemember the sky that you were born under, know each of the star's stories.Remember the moon, know who she is.Remember the sun's birth at dawn, that is the strongest point of time. Remember sundownand the giving away to night.Remember your birth, how your mother struggledto give you form and breath. You are evidence ofher life, and her mother's, and hers.Remember your father. He is your life, also.Remember the earth whose skin you are:red earth, black earth, yellow earth, white earthbrown earth, we are earth.Remember the plants, trees, animal life who all have theirtribes, their families, their histories, too. Talk to them,listen to them. They are alive poems.Remember the wind. Remember her voice. She knows theorigin of this universe.Remember you are all people and all people are you.Remember you are this universe and this universe is you.Remember all is in motion, is growing, is you.Remember language comes from this.Remember the dance language is, that life is.Remember.https://www.joyharjo.com/Photo by Merri J on Unsplash

Send us a text 45 minutes of Ep 258 - 2 hour special, I'm diving deep into the real life monsters in this Halloween Episode. I start with Real Housewives of Salt Lake City and deliver some serious gossip that I promised you about the latest drama on Season 6 Ep 6 unfolding with the cast. I break down the current storylines and give you my insider take on what's really happening behind the scenes in Salt Lake with Bronwyn's felonies, Lisa Barlow take down and Mary Cosby's demons, but then I shift gears into something much darker. I've just finished reading Virginia Giuffre's new book, Nobody's Girl and I'm breaking down the most shocking revelations about her experiences with Jeffrey Epstein and Ghislaine Maxwell. I walk you through how Ghislaine first approached Virginia when she was just sixteen years old working at the Mar-a-Lago spa, how she was groomed and manipulated into Epstein's world, and the disturbing details about his properties from El Brillo Way mansion to Zorro Ranch to his infamous island Little St. James. I also expose what's happening now with Sarah Kellen, one of Epstein's alleged accomplices who's living in luxury at the Continuum in Miami while victims demand justice. I reveal details about Epstein's background from Virginia's perspective, his time teaching at the Dalton School sleeping with girls for grades, his connections to Bear Stearns, and his calculated methods of control. There are shocking revelations about Prince Andrew, Donald Trump, George Clooney and the web of powerful people in Epstein's orbit that you won't want to miss. We learn about all Virginia's abuse from a child to when she meets Epstein. This is only the first part of the book, so we're just getting started with Virginia's full testimony. Full episode here: https://www.patreon.com/cw/DishingDramaWithDanaWilkey

In this episode, Nona Boss from Florida joins the show at the Ozark Mountain Bigfoot Conference camp out to share her riveting encounters with Bigfoot. Nonna recounts her initial interest sparked by Leonard Nimoy's show 'In Search Of', leading to a life of extraordinary sightings. She details her first Bigfoot encounter in 1986 while snake hunting in the Everglades, a later peaceful daylight sighting in 2022, and other intriguing experiences, including a terrifying rock-throwing incident and mysterious missing time in the North Georgia Mountains.Throughout, Nona discusses the complexities of Bigfoot research, the connection between Bigfoot and other paranormal phenomena, and her balanced perspective between flesh-and-blood and high strangeness theories.The Nonna Boss YouTube ChannelGet Our FREE NewsletterGet Brian's Books Leave Us A VoicemailVisit Our WebsiteSupport Our Sponsors00:00 Welcome and Introduction 00:20 First Encounter with Bigfoot 03:43 Son's Experience and Family Investigation 06:14 Daytime Sighting and Reflection 08:08 Analyzing the Nighttime Sighting 14:32 Exploring Other Experiences 18:13 The Mysterious Wet Rocks Incident 18:51 A Chilly Hike in Coal Creek 19:51 Interactive Tree Knocking 20:40 The Wall of Fear 22:17 A Strange Encounter in North Georgia Mountains 25:33 Missing Time and UFO Theories 30:12 Reflecting on Bigfoot Experiences 31:37 Exploring the Continuum of Phenomena 34:23 The NBO YouTube ChannelBecome a supporter of this podcast: https://www.spreaker.com/podcast/sasquatch-odyssey--4839697/support.

Dr. Katie Krulisky talks with Dr. Rosemary Dray-Spira about trends in prenatal exposure to antiseizure medications over the past decade, according to medication safety profiles. Read the related article in Neurology®.  Read the related North American Antiepileptic Drug Pregnancy Registry.  Read the related Continuum article.  Disclosures can be found at Neurology.org.      

In this podcast, experts Tina Cascone, MD, PhD; Christina Baik, MD, MPH; and David Planchard, MD, PhD discuss data-driven treatment for EGFR-mutant non-small cell lung cancer.

Limb-girdle muscular dystrophies (LGMDs) encompass a group of genetically heterogeneous skeletal muscle disorders. There has been an explosion of newly identified LGMD subtypes in the past decade, and results from preclinical studies and early-stage clinical trials of genetic therapies are promising for future disease-specific treatments. In this episode, Gordon Smith, MD, FAAN, speaks with Teerin Liewluck, MD, FAAN, FANA, author of the article “Limb-Girdle Muscular Dystrophies” in the Continuum® October 2025 Muscle and Neuromuscular Junction Disorders issue. Dr. Smith is a Continuum® Audio interviewer and a professor and chair of neurology at Kenneth and Dianne Wright Distinguished Chair in Clinical and Translational Research at Virginia Commonwealth University in Richmond, Virginia. Dr. Liewluck is a professor of neurology at the Division of Neuromuscular Medicine and Muscle Pathology Laboratory at Mayo Clinic College of Medicine in Rochester, Minnesota. Additional Resources Read the article: Limb-Girdle Muscular Dystrophies Subscribe to Continuum®: shop.lww.com/Continuum Earn CME (available only to AAN members): continpub.com/AudioCME Continuum® Aloud (verbatim audio-book style recordings of articles available only to Continuum® subscribers): continpub.com/Aloud More about the American Academy of Neurology: aan.com Social Media facebook.com/continuumcme @ContinuumAAN Host: @gordonsmithMD Guest: @TLiewluck Full episode transcript available here Dr Jones: This is Dr Lyell Jones, Editor-in-Chief of Continuum. Thank you for listening to Continuum Audio. Be sure to visit the links in the episode notes for information about earning CME, subscribing to the journal, and exclusive access to interviews not featured on the podcast. Dr Smith: This is Dr Gordon Smith with Continuum Audio. Today I'm interviewing Dr Teerin Liewluck, a good friend of mine at the Mayo Clinic, about his article on the limb girdle muscular dystrophies. This article appears in the October 2025 Continuum issue on muscle and neuromuscular junction disorders, a topic that is near and dear to my heart. Teerin, welcome to the podcast, and maybe you can introduce yourself to our listeners. Dr Liewluck: Thank you very much, Gordon, and I want to say hi to all the Continuum fans. So, I'm Dr Teerin Liewluck, I'm the professor of neurology at Mayo Clinic in Rochester, Minnesota. So, my practice focus on all aspects of muscle diseases, both acquired and genetic myopathies. Glad to be here. Dr Smith: I just had the great pleasure of seeing you at a seminar in Houston where you talked about this topic. And so, I'm really primed for this conversation, which I'm very excited about. I find this topic a little hard, and I'm hoping I can learn more from you. And I wonder if, as we get started, recognizing many of our listeners are not in practices focused purely on muscle disease, maybe you can provide some context about why this is important for folks doing general neurology or even general neuromuscular medicine? Why do they need to know about this? Dr Liewluck: Yes, certainly. So, I would say limb girdle muscular dystrophy probably the most complex category of subgroup of muscle diseases because, by itself, it includes thirty-four different subtypes, and the number's still expanding. So, each subtype is very rare. But if you group together, it really have significant number of patients, and these patients present with proximal weakness, very high CK, and these are common patients that can show up in the neurology clinic. So, I think it's very important even for general neurologists to pick up what subtle clues that may lead to the diagnosis because if we are able to provide correct diagnosis for the patients, that's very important for patient management. Dr Smith: So, I wonder if maybe we can talk a little bit about the phenotype, Terran. I mean, your article does a great job of going over the great diversity. And you know, I think many of us here, you know, limb girdle muscular dystrophy and we think of limb girdle weakness, but the phenotypic spectrum is bananas, right? Rhabdomyolysis, limb girdle distal myopathy. I mean, when should our listeners suspect LGMD? Dr Liewluck: Yes, I think by the definition to all the LGMD patients will have limb girdle of proximal weakness and very high CK. So, these are common phenotypes among thirty-four different subtypes. But if it did take into details, they have some subtle differences. In the article, what I try to simplify all these different subtypes that we can categorize at least half of them into three main group that each group the underlying defect sharing among those subtypes and also translate into similar muscles and extra muscular manifestations. You will learn that some of the limb girdle muscular dystrophy may present with rhabdomyolysis. And we typically think of this as metabolic myopathies. But if you have a rhabdomyolysis patient, the CK remain elevated even after the acute episode, that's the key that we need to think this could be LGMD. That's for an example. Dr Smith: So, I wonder if maybe we can start there. I was going to go in a different direction, but this is a good transition. It's easy to see the opportunity to get confused between LGMD or, in that case, a metabolic myopathy or other acquired myopathies. And I think particularly adult neurologists are more accustomed to seeing acquired muscle disease. Are there particular clues that, or pearls that adult neurologists seeing patients with muscle disease can use to recognize when they should be thinking about LGMD given the diverse phenotype? Dr Liewluck: Yes. What I always tell the patient is that there are more than a hundred different types of muscle diseases, but we can easily divide into groups: acquired and genetic or hereditary. So, the acquired disease is when you encounter the patients who present with acute or subacute cause of the weakness, relatively rapidly progressive. But on the opposite, if you encounter the patient who present with a much more slowly progressive cause of weakness over several months or years, you may need to think about genetic disease of the muscle with also including limb-girdle muscular dystrophy. The detailed exam to be able to distinguish between each type of muscular dystrophy. For example, if proximal weakness, certainly limb girdle muscular dystrophy. If a patient has facial weakness, scapular winking, so you would think about facial scapular hematoma dystrophy. So, the slowly progressive cause of weakness, proximal pattern of weakness, CK elevation, should be the point when you think about LGMD. Dr Smith: So, I have a question about diagnostic evaluation. I had a meeting with one of my colleagues, Qihua Fan, who's a great peripheral nerve expert, who also does neuromuscular pathology. And we were talking about how the pathology field has changed so much over the last ten years, and we're doing obviously fewer muscle biopsies. Our way of diagnosing them has changed a lot with the evolution of genetic testing. What's your diagnostic approach? Do you go right to genetic testing? Do you do targeted testing based on phenotype? What words of wisdom do you have there? Dr Liewluck: Yes, so, I mean, being a muscle pathologist myself, it is fair to say that the utility of muscle biopsies when you encounter a patient with suspects that limb girdle muscular dystrophy have reduced over the year. For example, we used to have like fifteen, seventeen hundred muscle biopsies a year; now we do only thirteen hundred biopsies a year. Yes, as you pointed out, the first step in my practice if I suspect LGMD is to go with genetic testing. And I would prefer the last gene panel that not only include the LGMD, but also include all other genetic muscle disease as well as the conjunctive myopic syndrome, because the phenotype can be somehow difficult to distinguish in certain patients. Dr Smith: So, do you ever get a muscle biopsy, Teerin? I mean you obviously do; only thirteen hundred. Holy cow, that's a lot. So, let me reframe my question. When do you get a muscle biopsy in these patients? Dr Liewluck: Muscle biopsy still is present in LGMD patients, it's just we don't use it at the first-tier diagnostic test anymore. So, we typically do it in selected cases after the genetic testing in those that came back inconclusive. As you know, you may run into the variant of unknown significance. You may use the muscle biopsy to see, is there any histopathology or abnormal protein Western blot that may further support the heterogenicity of the VUS. So, we still do it, but it typically comes after genetic testing and only in the selected cases that have inconclusive results or negative genetic testing. Dr Smith: I'd like to ask a question regarding serologic testing for autoantibodies. I refer to a really great case in your article. There are several of them, but this is a patient, a FKRP patient, who was originally thought to have dermatomyositis based on a low-titer ME2 antibody. You guys figured out the correct diagnosis. We send a lot of antibody panels out. Wonder if you have any wisdom, pearls, pitfalls, for how to interpret antibody tests in patients with chronic myopathies? We send a lot of them. And that's the sort of population where we need to be thinking about limb-girdle muscular dystrophies. It's a great case for those, which I hope is everyone who read your article in detail. What do you have to say about that? Dr Liewluck: Yes, so myositis antibodies, we already revolutionized a few of muscle diseases. I recall when I finished my fellowship thirteen years ago, so we don't really have much muscle myositis antibodies to check. But now the panel is expanded. But again, the antibodies alone cannot lead to diagnosis. You need to go back to your clinical. You need to make sure the clinical antibodies findings are matched. For example, if the key that- if the myocytes specific antibodies present only at the low positive title, it's more often to be false positive. So, you need to look carefully back in the patient, the group of phenotypes, and when in doubt we need to do muscle biopsies. Now on the opposite end, the other group of the antibody is the one for necrotizing autoimmune myopathy; or, the other name, immune-mediated necrotizing myopathy. This is the new group that we have learned only just recently that some patients may present as a typical presentation. I mean, when even thinking about the whole testing autoimmune myopathy, we think about those that present with some acute rapidly progressive weakness, maybe has history of sudden exposures. But we have some patients that present with very slowly progressive weakness like muscular dystrophies. So now in my practice, if I encounter a patient I suspect LGMD, in addition to doing genetic testing for LGMD, I also test for necrotizing doing with myopathy antibodies at the same time. And we typically get antibody back within what, a week or two, but projected testing would take a few months. Dr Smith: Yeah. And I guess maybe you could talk a little bit about pitfalls and interpretation of genetic tests, right? I think you have another case in your article, and I've certainly seen this, where a patient is misdiagnosed as having a genetic myopathy, LGMD, based on, let's say, just a misinterpretation of the genetic testing, right? So, I think we need to think of it on both sides. And I like the fact that the clinical aspects of diagnosis really are first and foremost most important. But maybe you can talk about wisdom in terms of interpretation of the genetic panel?  Dr Liewluck:Yes. So genetic testing, I think, is a complex issue, particularly for interpretation. And if you're not familiar with this, it's probably best to have your colleagues in genetics that help looking at this together. So, I think the common scenario we encounter is that in those dystrophies that are autosomal recessive, so we expect that the patient needs to have two abnormal copies of the genes to cause the disease. And if patients have only one abnormal copy, they are just a carrier. And commonly we see patients refer to us as much as dystrophy is by having only one abnormal copy. If they are a carrier, they should not have the weakness from that gene abnormality. So, this would be the principle that we really need to adhere. And if you run into those cases, then maybe you need to broaden your differential diagnosis. Dr Smith: I want to go back to the clinical phenomenology, and I've got a admission to make to you, Teerin. And I find it really hard to keep track of these disorders at, you know, thirty-four and climbing a lot of overlap, and it's hard to remember them. And I'm glad that I'm now going to have a Continuum article I can go to and look at the really great tables to sort things out. I'm curious whether you have all these top of mind? Do you have to look at the table too? And how should people who are seeing these patients organize their thoughts about it? I mean, is it important that you memorize all thirty-four plus disorders? How can you group them? What's your overall approach to that? Dr Liewluck: I need to admit that I've not memorize all twenty-four different subtypes, but I think what I triy to do even in my real-life practice is group it all together if you can. For example, I think that the biggest group of these LGMD is what we call alpha-dystroglycanopathies. So, this include already ten different subtypes of recessive LGMD. So alpha-dystroglycan is the core of the dystrophin-associated glycoprotein complex. And it's heavy glycosylated protein. So, the effect in ten different genes can affect the glycosylation or the process of adding sugar chain to this alpha-dystroglycan. And they have similar features in terms of the phenotype. They present with proximal weakness, calf pseudohypertrophy, very high CK, some may have recurrent rhabdomyolysis, and cardiac and rhythmic involvement are very common. This is one major group. Now the second group is the limb-girdle muscular dystrophy due to defective membrane repair, which includes two subtypes is the different and on dopamine five. The common feature in this group is that the weakness can be asymmetric and despite proximal weakness, they can have calf atrophy. On muscle biopsy sometimes you can see a myeloid on the muscle tissues. And the third group is the sarcoglycanopathy, which includes four different subtypes, and the presentation can look like we share. For the rest, sometimes go back to the table. Dr Smith: Thank you for that. And it prompts another question that I always wonder about. Do you have any theories about why such variability in the muscle groups that are involved? I mean, you just brought up dystroglycanopathy, for instance, as something that can cause a very distal predominant myopathy; others do not. Do we at this point now have an understanding given the better genetics that we have on this and work going on in therapeutic development, which I want to get to in a minute, that provides any insight why certain muscle groups are more affected? Dr Liewluck: Very good question, Gordon. And I would say the first question that led me interested in muscle disease---and this happened probably back in 2000 when I just finished medical school---is why, why, why? Why does muscle disease tend to affect proximal muscles? I thought by now, twenty-five years later, we'd have the answer. I don't. I think this, you don't know clearly why muscle diseases, some affect proximal, some affect distal. But the hypothesis is, and probably my personal hypothesis is, that maybe certain proteins may express more in certain muscles and that may affect different phenotypes. But, I mean, dysferlin has very good examples that can confuse us because some patients present with distal weakness, some patients present with proximal weakness, that's by the same gene defect. And in this patient, when we look at the MRI in detail, actually the patterns of fatty replacements in muscle are the same. Even patient who present clinically as a proximal or distal weakness, the imaging studies show the same finding. Bottom line, we don't know. Dr Smith: Yeah, who knew it could be so complex? Teerin, you brought up a really great point that I wanted to ask about, which is muscle MRI scan, right? We're now seeing studies that are doing very broad MR imaging. Do you use some muscle MRI very frequently in your clinical evaluation of these patients? And if so, how? Dr Liewluck: Maybe I don't use it as much as I could, but the most common scenario I use in this setting is when I have the genetic testing come back with the VUS. So, we look at each VUS, each gene in detail. And if anything is suspicious, what I do typically go back to the literature to see if that gene defect in particular has any common pattern of muscle involvement on the MRI. And if there is, I use MRI as one of the two to try to see if I can escalate the pathogenicity of that VUS. Dr Smith: And a VUS is a “Variant of Unknown Significance,” for our listeners. I'm proud that I remember that as a geneticist. These are exciting times in neurology in general, but particularly in an inherited muscle disease. And we're seeing a lot of therapeutic development, a lot going on in Duchenne now. What's the latest in terms of disease-modifying therapeutics and gene therapies in LGMD? Dr Liewluck: Yes. So, there are several precritical and early-phase critical trials for gene therapy for the common lymphoma of muscular dystrophies. For example, the sarcoglycanopathies, and they also have some biochemical therapy that arepossible for the LGMD to FKRP. But there are many things that I expect probably will come into the picture broader or later phase of critical tryouts, and hopefully we have something to offer for the patients similar to patients with Duchenne muscular dystrophy. Dr Smith: What haven't we talked about, I mean, holy cow? There's so much in your article. What's one thing we haven't talked about that our listeners need to hear? Dr Liewluck: Good questions. So, I think we covered all, but often we get patients with proximal weakness and high CK, and they all got labeled as having limb-girdlemuscular dystrophy. What I want to stress is that proximal weakness and high CK is a common feature for muscle diseases, so they need to think broad, need to think about all possibilities. Particularly don't want to miss something treatable. Chronic, slowly progressive cause, as I mentioned earlier, we think more about muscle dystrophy, but at the cranial range, we know that rare patients with necrotic autonomyopathy and present with limb good of weakness at a slowly progressive cost. So, make sure you think about these two when suspecting that LGMD patient diabetic testing has come back inconclusive. Dr Smith: Well, that's very helpful. And fortunately, there's several other articles in this issue of Continuum that help people think through this issue more broadly. Teerin, you certainly don't disappoint. I enjoyed listening to you about a month ago, and I enjoyed reading your article a great deal and enjoy talking to you even more. Thank you very much. Dr Liewluck: Thank you very much, Gordon. Dr Smith: Again, today I've been interviewing Dr Teerin Liewluck about his article on limb-girdle muscular dystrophy, which appears in the October 2025 Continuum issue on muscle and neuromuscular junction disorders. Please be sure to check out Continuum Audio episodes for this and other issues. And thanks to our listeners for joining today. Dr Monteith: This is Dr Teshamae Monteith, Associate Editor of Continuum Audio. If you've enjoyed this episode, you'll love the journal, which is full of in-depth and clinically relevant information important for neurology practitioners. Use the link in the episode notes to learn more and subscribe. AAN members, you can get CME for listening to this interview by completing the evaluation at continpub.com/audioCME. Thank you for listening to Continuum Audio.

“It started out by doing a kind of a white paper that we called Imperatives for Quality Cancer Care. Ellen Stovall, our CEO [of the National Coalition for Cancer Survivorship] at the time, gave this report to Dr. Richard Klausner, who was the head of National Cancer Institute at the time. He called Ellen immediately and said, ‘Why are we not doing something about this?' Within one year, we had the Office of Cancer Survivorship at NCI,” ONS member Susan Leigh, BSN, RN, told ONS member Ruth Van Gerpen, MS, RN-BC, APRN-CNS, AOCNS®, PMGT-BC, member of the ONS 50th anniversary committee, during a conversation about her involvement in cancer survivorship advocacy. Van Gerpen also spoke with ONS members Deborah Mayer, PhD, RN, AOCN®, FAAN, and Timiya S. Nolan, PhD, APRN-CNP, ANP-BC, about the history and future of cancer survivorship. Music Credit: “Fireflies and Stardust” by Kevin MacLeod Licensed under Creative Commons by Attribution 3.0  Episode Notes  This episode is not eligible for NCPD. ONS Podcast™ episodes: Episode 201: Which Survivorship Care Model Is Right for Your Patient? Episode 91: The Seasons of Survivorship Episode 49: The Cancer Survivorship Conundrum ONS Voice article: Our Unified Voices Can Improve Cancer Survivorship Care ONS book: Oncology Nurse Navigation: Delivering Patient-Centered Care Across the Continuum (third edition) ONS course: Essentials in Survivorship Care for the Advanced Practice Provider Clinical Journal of Oncology Nursing articles: Incorporating Nurse Navigation to Improve Cancer Survivorship Care Plan Delivery Survivorship Care: More Than Checking a Box The Missing Piece of Survivorship: Cancer Prevention Oncology Nursing Forum articles: Patient Perceptions of Survivorship Care Plans: A Mixed-Methods Evaluation Survivorship Care Plans: Health Actions Taken and Satisfaction After Use ONS Survivorship Learning Library Rehabilitation of People With Cancer: Position Statement from the Association of Rehabilitation Nurses (ARN) and endorsed by the Oncology Nursing Society Connie Henke Yarbro Oncology Nursing History Center American Cancer Society Survivorship resources Cancer Survivors Network Cancer Nation (formerly National Coalition for Cancer Survivorship) Cancer Survival Toolbox Imperatives for Quality Cancer Care: Access, Advocacy, Action, and Accountability (white paper) National Cancer Survivors Day Foundation New England Journal of Medicine article: Seasons of Survival: Reflections of a Physician With Cancer by Fitzhugh Mullan To discuss the information in this episode with other oncology nurses, visit the ONS Communities. To find resources for creating an ONS Podcast club in your chapter or nursing community, visit the ONS Podcast Library. To provide feedback or otherwise reach ONS about the podcast, email pubONSVoice@ons.org. Highlights From This Episode Leigh: “Another way that [National Coalition of Cancer Survivorship] got very involved with looking at how we keep this information coming and how we really share care with our outside physicians is the development of survivorship care plans. And then we also hoped that we would see more survivorship clinics by now. But between trying to get people to develop care plans and clinics, it's been like pulling teeth. It has been very difficult. And a lot of this struggle to get this going has been, first of all, there isn't enough money to do this. There isn't enough time for immediate staff to take these on, and we just don't have enough staff as it is now. And survivorship is not a moneymaker, so it's just something that has to be done kind of on the side.” TS 11:54 Mayer: “When I became ONS president in the '80s—I was the fourth ONS president—we were given a cancer grant to do something with our presidency. And that was when I really wanted to bring attention to rehabilitation as a means to address cancer survivorship issues because we had a very ‘treat 'em and street 'em' attitude. We gave you your treatment, and we sent you home, and you had to figure out the rest. And there wasn't a lot of knowledge or support to help you put your life back together again afterwards. And so in that process, it was an interdisciplinary group of professionals that tried to come up with what was an appropriate position statement because ONS was just starting to do position statements. And so we developed a first position statement on cancer rehabilitation to address survivorship issues in like 1987 to '89.” TS 17:15 Mayer: “When I went back to school for my PhD, I did my dissertation on health behaviors of cancer survivors and realizing the huge gap in the care that they were getting for anything other than their cancer. We were still focused on their tumor and on treating their tumor. But we were missing the picture that if the cancer didn't kill them, their heart disease would, and they would develop diabetes and other things. … But as people started living longer and longer, we were missing all these other chronic illnesses that would contribute to their quality of life and overall lifespan. So my dissertation put me on a different path, and I think the second part of my career was really focusing on instead of just relieving suffering and the quality of life issues, really looking at cancer care delivery and how we could do a better job of doing the team of teams that people needed to have their issues addressed.” TS 19:34 Nolan: “I ended up having my first permanent role on a hematology-oncology unit at the University of Alabama at Birmingham. And there, I literally saw patients who were fighting for their lives. And despite the severity of their illness, they wanted more than just survival. They wanted to have meaning. They wanted to have dignity. They wanted to have impact with the time that they had left, whatever it was. And so those experiences planted a seed in me. And that seed was that cancer care must extend beyond treatment and we need to embrace, really, quality of life.” TS 23:31 Leigh: “I was not the researcher. I was not the major writer. I was not the identifier of a lot of the risk factors. But I spread the seed. I took all that information from different sources and shared that with all of the audiences that I spoke to. So I was called a seed spreader, kind of the Johnny Appleseed of oncology nursing at that particular time. And then once we saw academia step in and say, ‘We need to get good data about what's going on here,' … then my stories and stories from survivors started decreasing and the presentations were given more from the academic standpoint.” TS 34:41 Nolan: “I really believe in community, academic, government, and industry approaches to survivorship as well. We can no longer operate in silos. We really need to learn how to walk across the aisle, build bridges as we can so that we can do this work together because we know that communities bring lived wisdom and context. And academicians bring the research and the ability to create the evidence. The government brings policy and public health infrastructure, and certainly industry brings innovation and scalability. But also in this new paradigm that we find ourselves in, the industry may also bring the dollars to be able to help us to do even more work.” TS 43:45

Facioscapulohumeral muscular dystrophy (FSHD) is one of the most common forms of muscular dystrophy, affecting individuals across the lifespan with variable severity. Advances in genetic understanding and therapeutic development have led to an era of promising disease-modifying strategies. In this episode, Katie Grouse, MD FAAN, speaks with Renatta N. Knox, MD, PhD, author of the article “Facioscapulohumeral Muscular Dystrophy” in the Continuum® October 2025 Muscle and Neuromuscular Junction Disorders issue. Dr. Grouse is a Continuum® Audio interviewer and a clinical assistant professor at the University of California San Francisco in San Francisco, California. Dr. Knox is an assistant professor of neurology in the Division of Pediatric Neurology and Neuromuscular Section at Washington University School of Medicine in St. Louis, Missouri. Additional Resources Read the article: Facioscapulohumeral Muscular Dystrophy Subscribe to Continuum®: shop.lww.com/Continuum Earn CME (available only to AAN members): continpub.com/AudioCME Continuum® Aloud (verbatim audio-book style recordings of articles available only to Continuum® subscribers): continpub.com/Aloud More about the American Academy of Neurology: aan.com Social Media facebook.com/continuumcme @ContinuumAAN  Full episode transcript available here Dr Jones: This is Dr Lyell Jones, Editor-in-Chief of Continuum. Thank you for listening to Continuum Audio. Be sure to visit the links in the episode notes for information about earning CME, subscribing to the journal, and exclusive access to interviews not featured on the podcast. Dr Grouse: This is Dr Katie Grouse. Today I'm interviewing Dr Renatta Knox about her article on fascioscapulohumeral muscular dystrophy, which appears in the October 2025 Continuum issue on muscle and neuromuscular junction disorders. Welcome to the podcast, and please introduce yourself to our audience. Dr Knox: Hi Katie, thank you so much for the invitation for the audio interview. I'm looking forward to our conversation. As she mentioned, my name is Renata Knox. It's a pleasure to be here today. Dr Grouse: I'd like to start by asking, what is the key message that you hope your readers will take from your article? Dr Knox: I would say two things. The first is an appreciation and understanding of the unique genetic mechanism that leads to FSHD. And the second is the really exciting therapy landscape that we find ourselves in. So, we're hopeful that there will actually be disease-modifying therapies for FSHD soon. Dr Grouse: We're really looking forward to learning more about that. Now, before we get to that piece, could you just remind us of the clinical manifestations and features that are specific to FSHD? Dr Knox: So, one of the most unique things about FSHD that we see clinically is the pattern of weakness. So, one of the first features is that it's asymmetric. And then there are certain muscle groups that typically are affected, and that's partly where the name comes from. So, we see effects in the face, the limbs, the trunk; and so, those are some of the unique features that we see clinically. Dr Grouse: I'd love it if you could walk us through how you approach diagnosing a patient who presents with proximal weakness where FSHD is in your differential. Dr Knox: Yeah, it's a really great question. So, I would say it depends. So, I actually focus on FSHD in my clinical practice. So, many times patients are referred to me because there's a very high suspicion or there's a known family history of FSHD. So, that's one category of cases. I would say the other category of case is where it's, as you said, maybe more proximal weakness more broadly. Someone that's before me who has a known family history, they really have some of the characteristic physical features---which I'm pretty attuned to, as this is, you know, part of my subspecialty---I'll actually go directly to FSHD genetic testing. And that is one of the unique features of this disease, that the next-generation sequencing panels that are typically used for some of our other muscle diseases, FSHD is not captured on those. So, we actually have to send targeted testing for FSHD to diagnose it. So, that is one category where, again, I have a very high suspicion either based on their clinical presentation and/or a known family history, then I will actually go directly to FSHD-targeted genetic testing. In the second case, where it is one of the conditions that I'm considering among others, I will do more broad testing. So, I will get a CK level to see if there's evidence of muscle breakdown. I'll likely also do one of the next-generation sequencing panels that we have access to, which will allow us to identify, potentially, one to two hundred potential muscle diseases. And then again, if FSHD is higher on my differential in that second group of patients, then I will also send targeted FSHD-specific testing. Dr Grouse: That's really helpful. And I'm wondering if you have any thoughts about common pitfalls that you've seen when providers are trying to work this up? Dr Knox: I don't know if I would say pitfalls. I think I would acknowledge that it's challenging. My subspecialty training in neuromuscular medicine and also gene therapy. And so FSHD is pretty high on my radar. But I would say in neurology in general---and then, you know, the general medical population---,it really isn't something that many people are seeing. So, I would say what patients will communicate to us sometimes is some frustration that maybe it took time to make the diagnosis, but I just have a deep understanding that it's not something that is on many people's radars. And I think, again, it's tricky because it's not picked up on these next-generation sequencing panels, which many of us can send pretty easily. It will be missed. And I will say the biggest pitfall is, again, if you're not thinking about it and you don't send that testing, you actually- it's very difficult to diagnose it. Dr Grouse: Thank you so much for highlighting that. I think there are many people who are not aware that those different panels really aren't picking that up and that they have to test specifically. So, I think that's a great thing for all of us to keep in mind. Are there any tips or tricks to the diagnosis, other than the genetic issues that you mentioned, that sometimes can really bring this diagnosis to the forefront? Dr Knox: I think things that really tip me off to having a higher suspicion for FSHD is facial weakness that we can detect on our exam. Scapular winging---again, there's a small subset of disorders which can impact that. Someone who's presenting with foot drop, you know, with facial weakness, I think definitely about FSHD more. Also, clinically, kind of the presentation or things that they're beginning to have difficulty with is a tip-off. So, if someone is an athlete, like, they're a volleyball player or basketball player and they say, oh, I'm having difficulties, you know, with movements that require them to elevate their arm, which can be a sign of the shoulder weakness that we classically see. Or someone who says, oh, I'm having a harder time shampooing my hair or combing my hair. So those can be tip-offs again, which are basically referencing the type of weakness that they have. Another feature of FSHD which isn't necessarily as broadly appreciated is that pain and fatigue are very common. So, if someone is coming in and saying, actually, I also have a significant amount of fatigue as well or a lot of pain, that's something that can tip me off to it. Hearing loss is something that we can also see in up to 20% of patients with FSHD. So, if they are having those symptoms or saying they're ringing in their ears, these are some things that will make me begin to think about it more. Dr Grouse: Oh, really helpful. I also found it really fascinating reading some of the very FSHD-specific clinical signs, some interesting- some diagrams and pictures as well, that are very specific to the pattern of weakness that develops in FSHD. So, I encourage our listeners to check that out. But are there any highlights from those little clinical pearls that you'd like to point out? Dr Knox: I think the poly-hill sign---so, these are these literal hills that we can see in the shoulders of patients with FSHD---is pretty classic. Popeye arms, which is this older term that we still use that has to do with which muscle groups are preserved versus those that have atrophy. So that's a common feature. And then I would say, really, the asymmetry is something that is a unique feature in FSHD. And again, we did our best to provide good representative images. So again, as you mentioned, Katie, I would really encourage people to look at those images and then think about cases that they may have seen and how similar they are so they can begin to recognize those signs as well. Dr Grouse: Now going back to the genetic topic, the complex genetic underpinnings of FSHD are really well-explained in your article; and again, worth taking a look at to remind ourselves of everything that's of that pathology. Now, I was wondering though, if you could give us a brief overview of how we should approach genetic testing in a suspected case of FSHD? You mentioned some specific panels, but it does sound like there's some more complexity to it as well. Dr Knox: Yes, and I'll just kind of briefly explain that complexity. Part of the thing that we're detecting in the genetic testing is the repeat number. And so, we're actually looking for a contraction in a repeat number. So, not an expansion, which were typical for some of the diseases that we think about, the trinucleotide repeat disorders. And this is why it's not captured in the next-generation sequencing panels, because they do not currently have the ability to do that. And so, again, what the type of testing that I do really depends on my suspicion. So again, if my suspicion is very high for FSHD---they have a family history, they have the classic features---then I will actually go directly to an FSHD-specific testing, which is available from various sources. If, again, it's among different things that I'm thinking about, I will get a CK lab. I typically will also send a next-generation sequencing panel specific for muscle diseases, perhaps muscular dystrophy; again, depending on what I'm thinking about. And then I will also send in a specific FSHD genetic test as well. People are beginning to use whole-genome sequencing, which is capturing some of our true nucleotide repeat disorders and becoming more comprehensive. So, my hope is that as that becomes more standard of care---like, whole-exome sequencing can be gotten pretty routinely now---that it may be easier for us to make some of these diagnoses. Dr Grouse: Well, that's really helpful, and thanks for that overview. Now another thing that you mentioned that I thought was really interesting in your article was that patients with, you know, history of FSHD, perhaps in the family, who are pregnant and want to screen for this disease would not be able to use sort of the more common screening tests like cell-free DNA testing and may have to go to other means to do that. What is generally their route to this type of testing? Dr Knox: Yeah, great question, and really important question for family planning purposes, and it definitely comes up in clinical practice. And so again, because of the unique genetics of FSHD, you actually have to do invasive genetic testing currently to be able to test it. And so that's, you know, amnio or chorio, and then send it to a lab that can perform, again, FSHD-specific testing on the samples that are presented. And there are obviously labs that are capable of doing that and centers that are capable of doing that, but it is not picked up on the cell-free DNA panels that are being very routinely used. You or your provider has to be thinking about it to send that specific testing, similar to our patients that come into clinic and have not yet been diagnosed. Dr Grouse: Once you have the diagnosis, what are our options for therapy? I think it sounds like at this current time, it looks to be mostly supportive. What are some of the supportive care options we should keep in mind? Dr Knox: Yes, so that is definitely accurate. Care today is supportive, but again, we're very excited about the clinical trial and therapy landscape for FSHD. So, I work very closely with my physical therapy colleagues that are in clinic with me. So, we work very closely with physical and occupational therapists to help with supportive measures, adaptive measures, doing assessments, helping our patients to be able to move and exercise safely and effectively. As I mentioned, pain is very common in FSHD and so we can treat that with medications. The most common medication that we use to treat for pain in FSHD are NSAIDs. And then other than that it's really, you know, supportive measures. Do they need to see other subspecialists? There are some surgical options. Those are used very rarely to help with some of the scapular weakness, but typically it's physical therapy, occupational therapy, supportive devices. We treat the pain as we're able to, and then we work with other subspecialists to screen, monitor and support our patients to the best of our ability. Dr Grouse: Well, without further ado, I'd love to hear more about what's coming down the pipeline in clinical trials. What can we look forward to seeing, hopefully, in future years to treat these patients? Dr Knox: Yes. And so, this is actually what got me interested in the neuromuscle space in general is that, because we now for many years have known the genetic cause of many of these disorders as well as some of the underlying mechanisms, we can actually use advances in therapeutics to do what we call targeted therapies. So, rather than treating symptoms or indirect methods or doing kind of broad drug screens---which, again, still do take place and still do have their place---we actually can target mechanisms directly. And so, we know that the underlying biology of FSHD is due to this protein called DUX4 being expressed when it should not be. So, it's what we call a toxic gain of function. And so, the targeted way to address this is to suppress DUX4 expression. And so, kind of broadly speaking, what we're really excited about are a couple of products that are currently in clinical trials right now that actually caused DUX4 suppression to be suppressed. And again, these are targeted pathways. And so, again, the hope is that by doing that, we can hopefully slow the progression of the disease, potentially stop progression of the disease, and potentially reverse. Again, we don't know if that might be possible, but that is one of the hopes. Dr Grouse: Well, that's really exciting, and I know we're all looking forward to more coming down the pipeline soon, and hopefully more things that can really offer some exciting treatments for our patients with this condition. Now, a little more deep-dive into our patients who are diagnosed. You've reviewed some of the treatments currently available and hopefully may someday soon be available. Are there other things that we should be keeping in mind in this population? For instance, screenings that we should be doing for other extramuscular manifestations that we need to be thinking about? Dr Knox: I will answer that question two ways. I think something that's very important to acknowledge is the impact that these diagnoses and these conditions have on our patient practically, psychologically. One of the other unique features of FSHD is, it's autosomal-dominant. So, if it is in a family, you can have many family members who are affected, but the variability is very high. And so, you can have in the same family someone who is wheelchair-dependent, and someone else in the family with the same underlying genetics who has no signs or symptoms or is very mildly affected. And that is something that is definitely challenging for our families and patients to navigate if they're very different than their family members with the same condition. And just navigating the world with a condition that, you know, can be physically debilitating and cause changes to what they're able to do or not able to do, progression is something that's very difficult to handle. So, I think that's one set of things. And we try our best, you know, with my team and my other colleagues in the space, to support our families and patients in the best way that we can. Secondly, there is very important screening that needs to be done for this condition. So, one of the things- and the current guidelines which are actually being updated, the last update was in 2015 is all patients that undergo pulmonary function testing or PFTs. And so that's something we do at baseline and we do at least annually in my practice. Young kids who are presenting very early or patients with certain genetics that we know are more predisposed to extra muscular manifestations, we recommend screening for hearing, which is one of the manifestations, and ophthalmologic exam to look for retinovascular changes, which is one of the manifestations as well. Those are the more common ones that are typically done. There's also some evidence in pediatric patients with very severe manifestations that there may be some cognitive impacts, learning impacts. And so, that is something we're also thinking about screening and supporting our patients in that way. And again, we typically work with these patients in a multidisciplinary team depending on what manifestations and the degrees to which they're impacted by the disorder. Dr Grouse: Thank you so much for that answer. I think a lot of us forget sometimes when we get really focused on what can we do now, that we forget to kind of stop and reflect on sort of the more holistic approach. How is this affecting the patient? How is this affecting the patient's family dynamic, and what other ways are they going through life with this condition that we need to be thinking about? So, I appreciate you bringing that up. I wanted to ask, sort of based on what you're talking about and what you mentioned already, you happened to mention that what initially drew you that to this work was your interest in some of the really exciting breakthroughs in the field. Well, was there anything else that drew you to, specifically, congenital neuromuscular diseases, and FSHD in particular? Dr Knox: I'm a physician scientist by training, and so I would describe myself also as a molecular biologist. So, I love getting into the nitty gritties of disease mechanisms, what genes are doing in bodies, how they function. And so, as I mentioned earlier, in the neuromuscle space, we've known for many years the genetic cause of many of these disorders and have done great, you know, mechanistic work to kind of define why we see the disease. And then now we're at this intersection of that knowledge marrying with these really novel therapeutic approaches, gene therapy approaches, being able to intersect and then in very creative ways actually target diseases very directly. And so, I would say it really is the combination of those two things. FSHD has a really fascinating unique biology, which again, we encourage everyone to read about more in the article. That really drew me to it. I'm very interested in gene regulation, transcription. This is one of the underlying mechanisms that is gone awry in the disorder, and then that being married to advances in therapeutics. So, you could wed those two pieces of information and actually meaningfully impact patient 's lives. And again, that's the real privilege and honor to witness is how these therapies can transform lives. And I saw it happened with this one case for this one disorder when I was a resident where there was no treatment. Young children, unfortunately, would not survive the disease. And then I saw the therapy come be in development and literally change the trajectory. And this is what we're very hopeful for in the FSHD space, that wedding, this wonderful basic science research, translational research, companies working together to develop these therapies that can transform lives. It is just so beautiful to witness and see, and it's something that I get to do. You know, it's a part of my job, so it's a real privilege. Dr Grouse: Well, I have to say, it's really inspiring hearing you talk about it. And I imagine that many neurologists-in-training who are listening to this may be inspired as well and may be convinced to go into this field for that very reason. So, thank you so much for sharing all of this information with us today. I learned a lot, and I think all of our listeners have too. Dr Knox: Thank you. It's really been a pleasure. Dr Grouse: Again, today I've been interviewing Dr Renatta Knox about her article on fascioscapulohumeral muscular dystrophy, which appears in the October 2025 Continuum issue on muscle and neuromuscular junction disorders. Be sure to check out Continuum Audio episodes from this and other issues. And thank you to our listeners for joining today. Dr Monteith: This is Dr Teshamae Monteith, Associate Editor of Continuum Audio. If you've enjoyed this episode, you'll love the journal, which is full of in-depth and clinically relevant information important for neurology practitioners. Use the link in the episode notes to learn more and subscribe. AAN members, you can get CME for listening to this interview by completing the evaluation at continpub.com/audioCME. Thank you for listening to Continuum Audio.

This episode is a very special one because, thanks to one of my guests, we are going to hear from somebody who I assumed I had missed my chance of getting to appear on this podcast. Let me explain. Tony Ursano of Insurance Advisory Partners is someone I have interviewed many times over the past 20 years. In fact I first met Tony when he was working at Willis during the thirteen-year reign of our second guest. Tony has recently executed quite a coup – that's because he has managed to convince industry legend and former Willis CEO Joe Plumeri to come and work with him at Insurance Advisory Partners. I'll let Joe and Tony do the talking, but I'll just say you are in for a treat. Many of us in the insurance industry, particularly when we get to a certain age, tend to get nostalgic about an unspecified past era when there were so many more strong characters working in the sector than there are now and then we complain that these days things aren't quite the same. Well, Joe Plumeri is exactly the kind of person that people my age tend to think of when they make that complaint Of course Joe is a senior executive with a glittering multi-decade career, spanning a broad spectrum of financial services, but he is also a complete original and a natural speaker and great motivator. One of his strongest skills is the ability to express often very complex ideas in simple terms that large numbers of people can quickly comprehend and get behind. He is always original and he is always direct. There are no grey areas. This discussion examines the prospects for M&A and consolidation all the way through the insurance value chain, from carriers of all sizes and specialisms to mega brokers, MGAs and even hybrid carriers. You'll leave this discussion incredibly well informed and in no doubt what Tony and Joe think are going to happen – but there'll be a little bit extra – you will have met an industry legend and heard his unique perspective along the way. LINKS: We thank our naming sponsor AdvantageGo: https://www.advantagego.com

In the Star Trek: Voyager episode Q2, Q drops by Voyager for a surprise visit, and he brings Q with him. No, not himself… the other Q. His son. This junior Q is every bit as powerful, unpredictable, and exasperating as his old man, with none of the charm (yet). When the Continuum threatens to de-Q him permanently, it's up to Aunt Kathy to teach Q some responsibility before he's stuck living as an amoeba or worse, a teenager. Mission Log wrangles Q, Q, and more Q in Q2. Hosted by John Champion and Norman Lao MISSION LOG SURVEY: Take the survey NOW and you could win rare, original TOS film cells! Offer ends October 10, 2025. Welcome to Mission Log, a Roddenberry Entertainment podcast, where we explore the Star Trek universe one episode at a time. Each week, Mission Log examines a single episode of Star Trek, diving into its ethical subtext, metaphors, and cultural significance. From the show's most iconic moments to its hidden gems, we analyze what makes Star Trek one of the greatest science fiction sagas of all time. In every episode of Mission Log we… Recap the story and analyze key moments. Discuss the morals, messages, and meanings of the dilemmas presented. Debate whether the episode holds up and if the themes are still relevant. Join the Conversation: For as little as $1 a month, you can gain access to our exclusive Discord Community! There, we continue the discussion with dedicated channels and  weekly video chats with the hosts. Become a member of our Patreon today! https://www.Patreon.com/MissionLog SPECIAL THANKS the supporters of this week's show: Chris Garis, Julie Miller, Stuart, Michael Park, Paul Shadwell, Matt Esposito, Alan Simonis, Mike Richards, David Takechi, Mike Schiable, VADM Erickson, and Lars Seme Thanks to all of our Patreon Supporters https://www.missionlogpodcast.com/sponsors/ Want to share your thoughts on an upcoming episode? Email us at MissionLog@Roddenberry.com for a chance to be featured during the episode. Follow us on Social Media: INSTAGRAM https://www.instagram.com/RoddenberryEntertainment THREADS https://www.threads.net/@roddenberrypodcasts FACEBOOK https://www.facebook.com/MissionLogPod Did you know we're on YouTube? Find the video versions of your favorite shows like Mission Log: Prodigy, The Orville, as well as exclusive content only available on YouTube. Subscribe now:  https://www.youtube.com/@RoddenberryEntertainment?sub_confirmation=1 Our shows are part of the Roddenberry Entertainment family. For more great shows and to learn more about how we live the legacy of Gene Roddenberry, creator of Star Trek, follow us here: RODDENBERRY PODCASTS https://www.instagram.com/roddenberrypodcasts RODDENBERRY ENTERTAINMENT https://www.instagram.com/roddenberryofficial THE RODDENBERRY FOUNDATION https://www.instagram.com/theroddenberryfoundation   THIS EPISODE IS SPONSORED BY: Listeners like you - Support Mission Log on Patreon for early access to shows and the Mission Log Discord! Subscribe and Stay Updated: Never miss an episode! Subscribe on your preferred podcast player, leave a review, and join Mission Log on the journey of weekly deep dives into the Star Trek universe. Technical Director - Earl Green Producer - John Champion Associate Producer - Jessica Lynn Verdi Executive Producer - Eugene “Rod” Roddenberry Roddenberry Entertainment | All Rights Reserved

In today's episode I chat with Dr Daniela Aiello, a registered osteopath specialising in pregnancy and postpartum care at Bulleen Osteopathy in Melbourne's northern suburbs. Daniela brings over two decades of experience treating pregnant and postpartum women, combined with her personal journey as a mother of two (aged 14 and 11) and founder of Continuum, a compression wear brand designed specifically for women during pregnancy and postpartum recovery. This episode serves as an essential guide for expectant mothers, doulas, and midwives seeking to understand the most common musculoskeletal complaints during pregnancy and the fourth trimester. Today's sponsor - iL Tutto iL Tutto design nursery furniture that's as stylish as it is supportive. Their Trend Collection has already given parents the award-winning Frankie and Louie Nursery Chairs in our signature teddy-fleece. And now, we're so excited to welcome Louie in Corduroy — a brand new textured fabric available in three colours: Taupe, Green Olive, and Coconut.Corduroy brings a modern, tactile finish to the nursery, while Louie delivers the comfort parents love — with plush cushioning, smooth gliding, and thoughtful design for every feed, cuddle, and nap-time story.To celebrate, we're giving Australian Birth Stories listeners an exclusive discount:Use the code BIRTHSTORIES20 at checkout to receive 20% off your iL Tutto order, but hurry — this offer ends 12th October 2025.Shop the collection now at iltutto.com.au Hosted on Acast. See acast.com/privacy for more information.

In the Star Trek: Voyager episode Q2, Q drops by Voyager for a surprise visit, and he brings Q with him. No, not himself… the other Q. His son. This junior Q is every bit as powerful, unpredictable, and exasperating as his old man, with none of the charm (yet). When the Continuum threatens to de-Q him permanently, it's up to Aunt Kathy to teach Q some responsibility before he's stuck living as an amoeba or worse, a teenager. Mission Log wrangles Q, Q, and more Q in Q2. Hosted by John Champion and Norman Lao MISSION LOG SURVEY: Take the survey NOW and you could win rare, original TOS film cells! Offer ends October 10, 2025. Welcome to Mission Log, a Roddenberry Entertainment podcast, where we explore the Star Trek universe one episode at a time. Each week, Mission Log examines a single episode of Star Trek, diving into its ethical subtext, metaphors, and cultural significance. From the show's most iconic moments to its hidden gems, we analyze what makes Star Trek one of the greatest science fiction sagas of all time. In every episode of Mission Log we… Recap the story and analyze key moments. Discuss the morals, messages, and meanings of the dilemmas presented. Debate whether the episode holds up and if the themes are still relevant. Join the Conversation: For as little as $1 a month, you can gain access to our exclusive Discord Community! There, we continue the discussion with dedicated channels and  weekly video chats with the hosts. Become a member of our Patreon today! https://www.Patreon.com/MissionLog SPECIAL THANKS the supporters of this week's show: Chris Garis, Julie Miller, Stuart, Michael Park, Paul Shadwell, Matt Esposito, Alan Simonis, Mike Richards, David Takechi, Mike Schiable, VADM Erickson, and Lars Seme Thanks to all of our Patreon Supporters https://www.missionlogpodcast.com/sponsors/ Want to share your thoughts on an upcoming episode? Email us at MissionLog@Roddenberry.com for a chance to be featured during the episode. Follow us on Social Media: INSTAGRAM https://www.instagram.com/RoddenberryEntertainment THREADS https://www.threads.net/@roddenberrypodcasts FACEBOOK https://www.facebook.com/MissionLogPod Did you know we're on YouTube? Find the video versions of your favorite shows like Mission Log: Prodigy, The Orville, as well as exclusive content only available on YouTube. Subscribe now:  https://www.youtube.com/@RoddenberryEntertainment?sub_confirmation=1 Our shows are part of the Roddenberry Entertainment family. For more great shows and to learn more about how we live the legacy of Gene Roddenberry, creator of Star Trek, follow us here: RODDENBERRY PODCASTS https://www.instagram.com/roddenberrypodcasts RODDENBERRY ENTERTAINMENT https://www.instagram.com/roddenberryofficial THE RODDENBERRY FOUNDATION https://www.instagram.com/theroddenberryfoundation   THIS EPISODE IS SPONSORED BY: Listeners like you - Support Mission Log on Patreon for early access to shows and the Mission Log Discord! Subscribe and Stay Updated: Never miss an episode! Subscribe on your preferred podcast player, leave a review, and join Mission Log on the journey of weekly deep dives into the Star Trek universe. Technical Director - Earl Green Producer - John Champion Associate Producer - Jessica Lynn Verdi Executive Producer - Eugene “Rod” Roddenberry Roddenberry Entertainment | All Rights Reserved

While genetic testing has replaced muscle biopsy in the diagnosis of many genetic myopathies, clinical assessment and the integration of clinical and laboratory findings remain key elements for the diagnosis and treatment of muscle diseases. In this episode, Casey Albin, MD, speaks with Margherita Milone, MD, PhD, FAAN, FANA, author of the article “A Pattern Recognition Approach to Myopathy” in the Continuum® October 2025 Muscle and Neuromuscular Junction Disorders issue. Dr. Albin is a Continuum® Audio interviewer, associate editor of media engagement, and an assistant professor of neurology and neurosurgery at Emory University School of Medicine in Atlanta, Georgia. Dr. Milone is a professor of neurology and the director of the Muscle Pathology Laboratory at Mayo Clinic College of Medicine and Science in Rochester, Minnesota. Additional Resources Read the article: A Pattern Recognition Approach to Myopathy Subscribe to Continuum®: shop.lww.com/Continuum Earn CME (available only to AAN members): continpub.com/AudioCME Continuum® Aloud (verbatim audio-book style recordings of articles available only to Continuum® subscribers): continpub.com/Aloud More about the American Academy of Neurology: aan.com Social Media facebook.com/continuumcme @ContinuumAAN Host: @caseyalbin Full episode transcript available here Dr Jones: This is Dr Lyell Jones, Editor-in-Chief of Continuum. Thank you for listening to Continuum Audio. Be sure to visit the links in the episode notes for information about earning CME, subscribing to the journal, and exclusive access to interviews not featured on the podcast. Dr Albin: Hello, this is Dr Casey Albin. Today I'm interviewing Dr Margherita Milone on her article on a pattern recognition approach to myopathy, which appears in the October 2025 Continuum issue on muscle and neuromuscular junction disorders. Welcome to the podcast, Dr Milone. Thank you so much for joining us. I'll start off by having you introduce yourself to our listeners. Dr Milone: Hello Casey, thank you so much for this interview and for bringing the attention to the article on muscle diseases. So, I'm Margherita Milone. I'm one of the neuromuscular neurologists at Mayo Clinic in Rochester. I have been interested in muscle disorders since I was a neurology resident many years ago. Muscle diseases are the focus of my clinical practice and research interest. Dr Albin: Wonderful. Thank you so much. When I think about myopathies, I generally tend to think of three large buckets: the genetic myopathy, the inflammatory myopathies, and then the necrotizing myopathies. Is that a reasonable approach to conceptualizing these myopathies? Dr Milone: Yeah, the ideology of the myopathies can be quite broad. And yes, we have a large group of genetic muscle diseases, which are the most common. And then we have immune-mediated muscle diseases, which include inflammatory myopathies as well as some form of necrotizing myopathies. Then we have some metabolic myopathies, which could be acquired or could be genetic. And then there are muscle diseases that are due to toxins as well as to infection. Dr Albin: Wow. So, lots of different etiologies. And that really struck me about your article, is that these can present in really heterogeneous ways, and some of them don't really read the rule book. So, we have to have a really high level of suspicion, for someone who's coming in with weakness, to remember to think about a myopathy. One of the things that I like to do is try to take us through a little bit of a case to sort of walk us through how you would approach if someone comes in. So, let's say you get, you know, a forty-year-old woman, and she's presenting with several months of progressive weakness. And she says that even recently she's noted just a little bit of difficulty swallowing. It feels to her like things are getting stuck. What are some of the things when you are approaching the history that would help you tease this to a myopathy instead of so many other things that can cause a patient to be weak? Dr Milone: Yes. So, as you mentioned, people who have a muscle disease have the muscle weakness often, but the muscle weakness is not just specific for a muscle disease. Because you can have a mass weakness in somebody who has a neurogenic paralysis. The problem with diagnosis of muscle diseases is that patients with these disorders have a limited number of symptom and sign that does not match the large heterogeneity of the etiology. So, in someone who has weakness, that weakness could represent a muscle disease, could represent an anterior horn cell disease, could represent a defect of neuromuscular junction. The clinical history of weakness is not sufficient by itself to make you think about a muscle disease. You have to keep that in the differential diagnosis. But your examination will help in corroborating your suspicion of a muscle disease. Let's say if you have a patient, the patient that you described, with six months' history of progressive weakness, dysphagia, and that patient has normal reflexes, and the patient has no clinical evidence for muscle fatigability and no sensory loss, then the probability that that patient has a myopathy increases. Dr Albin: Ah, that's really helpful. I'm hearing a lot of it is actually the lack of other findings. In some ways it's asking, you know, have you experienced numbness and tingling? And if not, that's sort of eliminating that this might not be a neuropathy problem. And then again, that fatigability- obviously fatigability is not specific to a neuromuscular junction, but knowing that is a hallmark of myasthenia, the most common of neuromuscular disorders. Getting that off the table helps you say, okay, well, it's not a neuromuscular junction problem, perhaps. Now we have to think more about, is this a muscle problem itself? Are there any patterns that the patients describe? I have difficulty getting up from a chair, or I have difficulty brushing my hair. When I think of myopathies, I historically have thought of, sort of, more proximal weakness. Is that always true, or not so much? Dr Milone: Yeah. So, there are muscle diseases that involve predominantly proximal weakness. For example, the patient you mentioned earlier could have, for example, an autoimmune muscle disease, a necrotizing autoimmune myopathy; could have, perhaps, dermatomyositis if there are skin changes. But a patient with muscle disease can also present with a different pattern of weakness. So, myopathies can lead to this weakness, and foot drop myopathies can cause- can manifest with the weakness of the calf muscles. So, you may have a patient presenting to the clinic who has no the inability to stand on tiptoes, or you may have a patient who has just facial weakness, who has noted the difficulty sealing their lips on the glasses when they drink and experiencing some drooling in that setting, plus some hand weakness. So, the muscle involved in muscle diseases can vary depending on the underlying cause of the muscle disease. Dr Albin: That's really helpful. So, it really is really keeping an open mind and looking for some supporting features, whether it's bulbar involvement, extraocular eye muscle involvement; looking, you know, is it proximal, is it distal? And then remembering that any of those patterns can also be a muscle problem, even if sometimes we think of distal being more neuropathy and proximal myopathy. Really, there's a host of ranges for this. I really took that away from your article. This is, unfortunately, not just a neat way to box these. We really have to have that broad differential. Let me ask another question about your history. How often do you find that patients complain of, sort of, muscular cramping or muscle pain? And does that help you in terms of deciding what type of myopathy they may have? Dr Milone: Many patients with muscle disease have muscle pain. The muscle pain could signal a presence of inflammation in skeletal muscle, could be the result of overuse from a muscle that is not functioning normally. People who have myotonia experience muscle stiffness and muscle pain. Patients who have a metabolic myopathy usually have exercise-induced muscle pain. But, as we know, muscle pain is also very nonspecific, so we have to try to find out from the patient in what setting the pain specifically occurs. Dr Albin: That's really helpful. So, it's asking a little bit more details about the type of cramping that they have, the type of pain they may be experiencing, to help you refine that differential. Similarly, one of the things that I historically have always associated with myopathies is an elevation in the CK, or the creatinine kinase. How sensitive and specific is that, and how do you as the expert sort of take into account, you know, what their CK may be? Dr Milone: So, this is a very good point. And the elevation of creatine kinase can provide a clue that the patient has a muscle disease, but it is nonspecific for muscle disease because we know that elevation of creatine kinase can occur in the setting of a neurogenic process. For example, we can see elevation of the creatine kinase in patients who have ALS or in patients who have spinal muscular atrophy. And in these patients---for example, those with spinal muscular atrophy---the CK elevation can be also of significantly elevated up to a couple of thousand. Conversely, we can have muscle diseases where the CK elevation does not occur. Examples of these are some genetic muscle disease, but also some acquired muscle diseases. If we think of, for example, cases where inflammation in the muscle occurs in between muscle fibers, more in the interstitium of the muscle, that disease may not lead to significant elevation of the CK. Dr Albin: That's super helpful. So, I'm hearing you say CK may be helpful, but it's neither completely sensitive nor completely specific when we're thinking about myopathic disorders. Dr Milone: You are correct. Dr Albin: Great. So, coming back to our patients, you know, she says that she has this dysphasia. How do bulbar involvement or extraocular eye movement involvement, how do those help narrow your differential? And what sort of disorders are you thinking of for patients who may have that bulbar or extraocular muscle involvement? Dr Milone: Regarding dysphagia, that can occur in the setting of acquired myopathies relatively frequent; for example, in inclusion body myositis or in other forms of inflammatory myopathy. Your patient, I believe, was in their forties, so it's a little bit too young for inclusion body myositis. Involvement of the extraocular muscles is usually much more common in genetic muscle diseases and much less frequent in hereditary muscle disease. So, if there is involvement of the extraocular muscles, and if there is a dysphagia, and if there is a proximal weakness, you may think about oculopharyngeal muscular dystrophy, for example. But obviously, in a patient who has only six months of history, we have to pay attention of the degree of weakness the patient has developed since the symptom onset. Because if the degree of weakness is mild, yes, it could still be a genetic or could be an acquired disease. But if we have a patient who, in six months, from being normal became unable to climb stairs, then we worry much more about an acquired muscle disease. Dr Albin: That's really helpful. So, the time force of this is really important. And when you're trying to think about, do I put this in sort of a hereditary form of muscle disease, thinking more of an indolent core, something that's going to be slowly progressive versus one of those inflammatory or necrotizing pathologies, that's going to be a much more quick onset, rapidly progressive, Do I have that right? Dr Milone: In general, the statement is correct. They tend, acquired muscle disease, to have a faster course compared to a muscular dystrophy. But there are exceptions. There have been patients with immune mediated necrotizing myopathy who have been misdiagnosed as having limb-girdle muscular dystrophy just because the disease has been very slowly progressive, and vice versa. There may be some genetic muscle diseases that can present in a relatively fast way. And one of these is a lipid storage myopathy, where some patients may develop subacutely weakness, dysphagia, and even respiratory difficulties. Dr Albin: Again, I'm hearing you say that we really have to have an open mind that myopathies can present in a whole bunch of different ways with a bunch of different phenotypes. And so, keeping that in mind, once you suspect someone has a myopathy, looking at the testing from the EMG perspective and then maybe laboratory testing, how do you use that information to guide your work up? Dr Milone: The EMG has a crucial role in the diagnosis of muscle diseases. Because, as we said earlier, weakness could be the result of muscle disease or other form of neuromuscular disease. If the EMG study will show evidence of muscle disease supporting your diagnostic hypothesis, now you have to decide, is this an acquired muscle disease or is this a genetic muscle disease? If you think that, based on clinical history of, perhaps, subacute pores, it is more likely that the patient has an acquired muscle disease, then I would request a muscle biopsy. The muscle biopsy will look for structural abnormalities that could help in narrowing down the type of muscle disease that the patient has. Dr Albin: That's really helpful. When we're sending people to get muscle biopsies, are there any tips that you would give the listeners in terms of what site to biopsy or what site, maybe, not to biopsy? Dr Milone: This is a very important point. A muscle biopsy has the highest diagnostic yield if it's done in a muscle that is weak. And because muscle diseases can result in proximal or distal weakness, if your patient has distal weakness, you should really biopsy a distal muscle. However, we do not wish to biopsy a muscle that is too weak, because otherwise the biopsy sample will result just in fibrous and fatty connected tissue. So, we want to biopsy a muscle that has mild to moderate weakness. Dr Albin: Great. So, a little Goldilocks phenomenon: has to be some weak, but not too weak. You got to get just the right feature there. I love that. That's a really good pearl for our listeners to take. What about on the flip side? Let's say you don't think it's an acquired a muscular disease. How are you handling testing in that situation? Dr Milone: If you think the patient has a genetic muscle disease, you pay a lot of attention to the distribution of the weakness. Ask yourself, what is the best pattern that represent the patient's weakness? So, if I have a patient who has facial weakness, dysphagia, muscle cramping, and then on examination represent myotonia, then at that point we can go straight to a genetic test for myotonic dystrophy type one. Dr Albin: That's super helpful. Dr Milone: So, you request directly that generic test and wait for the result. If positive, you will have proof that your diagnostic hypothesis was correct. Dr Albin: You're using the genetic testing to confirm your hypothesis, not just sending a whole panel of them. You're really informing that testing based on the patient's pattern of weakness and the exam findings, and sometimes even the EMG findings as well. Is that correct? Dr Milone: You are correct, and ideally, yes. And this is true for certain muscle diseases. In addition to myotonic dystrophy type one, for example, if you have a patient who has fascial scapulohumeral muscular weakness, you can directly request a test for FSHD. So, the characterization of the clinical phenotype is crucial before selecting the genetic test for diagnosis. Dr Albin: Wonderful. Dr Milone: However, this is not always possible, because you may have a patient who has just a limb-girdle weakness, and the limb-girdle weakness can be limb-girdle muscular dystrophy. But we know that there are many, many types of limb-girdle muscular dystrophies. Therefore, the phenotype is not sufficient to request specific genetic tests for one specific form of a limb-girdle muscular dystrophy. And in those cases, more complex next-generation sequencing panels have a higher chance of providing the answer. Dr Albin: Got it, that makes sense. So, sometimes we're using a specific genetic test; sometimes, it is unfortunate that we just cannot narrow down to one disease that we might be looking for, and we may need a panel in that situation. Dr Milone: You are correct. Dr Albin: Fantastic. Well, as we wrap up, is there anything on the horizon for muscular disorders that you're really excited about? Dr Milone: Yes, there are a lot of exciting studies ongoing for gene therapy, gene editing. So, these studies are very promising for the treatment of genetic muscle disease, and I'm sure there will be therapists that will improve the patient's quality of life and the disease outcome. Dr Albin: It's really exciting. Well, thank you again. Today I've been interviewing Dr Margarita Malone on her article on a pattern recognition approach to myopathy, which appears in the October 2025 Continuum issue on muscle and neuromuscular junction disorders. Be sure to check out Continuum Audio episodes from this and other issues, and thank you to our listeners for joining us today. And thank you, Dr Milone. Dr Milone: Thank you, Casey. Very nice chatting with you about this. Dr Monteith: This is Dr Teshamae Monteith, Associate Editor of Continuum Audio. If you've enjoyed this episode, you'll love the journal, which is full of in-depth and clinically relevant information important for neurology practitioners. Use the link in the episode notes to learn more and subscribe. AAN members, you can get CME for listening to this interview by completing the evaluation at continpub.com/audioCME. Thank you for listening to Continuum Audio.