Dr. Jeremy Sharp (01:20)
Hey everyone, welcome back to the Testing Psychologist Podcast. I’m thrilled to be here with you. We’re talking about clinical stuff today, and our episode is all about functional neurological disorders or FNDs. So I’ve got a phenomenal expert here on the podcast with me today, Dr. Allison Buckholtz. She is assistant professor at Johns Hopkins University School of Medicine with appointments in psychiatry and behavioral sciences and neurology.
Dr. Buckholt works as a neuropsychologist at Johns Hopkins Hospital in Baltimore, Maryland, where she leads the Adult Epilepsy Neuropsychology Service. She’s a founding member of the Functional Neurological Disorder Society and founded and co-directs the Johns Hopkins FND program. So she definitely has the chops to be having this conversation, and I am thrilled to have her on the podcast. So
we have talked about FND briefly in a another podcast episode, or rather, we did one episode on FND, and that’s about it as far as coverage here on the podcast. So this is a real opportunity to both revisit some of the basics of FD, including types and what it looks like and how it manifests, what we understand about the neurology of FND. but then we also go deeper into the assessment process.
we talk a lot about treatment of FD. We talk about program building around FND and how to coordinate care. So there is a lot of information here in this episode to take away that I think will be helpful. And like I said, Dr. Buckholz is one of the best people on the planet to be talking about this stuff with me. So I hope you enjoy this episode with Dr. Allison Buckholz on functional neurological disorders.
Dr. Jeremy Sharp (03:19)
Allie, hey, welcome to the podcast.
Dr. Alison Buchholz (03:21)
Thank you so much for having me, Jeremy. It’s great to be here.
Dr. Jeremy Sharp (03:24)
Likewise, yeah, I am glad, glad to have you. this is such a fascinating topic. functional neurological disorder. We did an episode on this, gosh, several months ago, kind of a broad overview. And so, yeah, I’m looking forward to having you here and doing a little bit of a deeper dive on this topic because especially for those of us like outside the hospital setting, you know, it’s it’s a really interesting, fascinating presentation.
Dr. Alison Buchholz (03:31)
Yeah.
Mm-hmm.
Great.
Yeah. Yeah.
Yeah. Yeah. Well again, thanks for having me. I’m very excited to talk about it.
Dr. Jeremy Sharp (03:53)
Yeah, yeah, of course. Of course. Thanks for being here. so I’ll start with a question that I always start with, which is essentially like, you know, out of all the things that you could do, specialize in, like put your energy into, what is it about this topic that is so compelling for
Dr. Alison Buchholz (04:04)
Yeah.
I think it’s the potential to change things for the better and the potential to help. I think obviously the potential to help exists in so many places and spaces in the world, including healthcare and and medical professions, including as a neuropsychologist. But I think the thing that’s sort of unique about FND is well, a few things. I think one is that it has been so long.
misunderstood, poorly understood. Frankly, there’s so much that we still have to learn about FND. So so that excites me, both the unknown and the misunderstood. So things where things where there’s an opportunity to learn more and where there’s an opportunity to correct particularly misconceptions that have led to in injustices and and and
mistreatment, frankly, of a of a lot of folks historically, I think are are places that really excite me to to get involved. and and FND again is certainly that. Again, there’s a lot that we have left to learn, which is exciting. And there’s there’s a ton that has has long been misunderstood, leading to a lot of of mistreatment and underserving. and so that that sort of fuels my fire, I would say.
Dr. Jeremy Sharp (05:18)
Mm, yeah, yeah. Yeah. I’m gonna go off script, right off the bat and just ask. You know, that really piques my interest when you say like people been mistreated or poor poorly served. Like what what are you thinking of when when you s when you say that?
Dr. Alison Buchholz (05:22)
Sure. Sure. Yeah.
Yeah, yeah. I mean, so it it really just goes back to the history of our understanding of FND. And so so just to be clear, FND is the same phenomenon that we formerly called conversion disorder, and all of this the pseudo and psycho neurologic conditions. It’s it’s all it’s all the same the same thing, the same concept, the same the same problem. We’ve just thought about it and talked about it in different ways and
even before that, before the the idea of of a conversion disorder, which was introduced by Freud, and and the idea of that really was that emotional trauma or distress was converted into these these physical symptoms, which we have since evolved from that. And I’m sure we’ll talk more about our our common or our our I’m sorry, not common, our modern understanding of FND and how we’ve evolved to this point.
but even before that, there were ideas about people having functional neurologic symptoms due to possession by demons, things involving you know spirits, the wandering uterus was a a hypothesis at one point. so I think you know, because of the fact that we did not understand why.
folks were having these symptoms, we came up with lots of different hypotheses about why they may have been having these symptoms. And as you can imagine, given that those hypotheses included things like wandering uteri and and and folks having you know, emotional trauma that they weren’t aware of that was being represented by these physical symptoms, that of course led to people being
labeled as having those problems that they didn’t necessarily have and and and doctors and and other people trying to treat the wrong thing. So again sort of going down this rabbit hole of thinking that everybody with functional neurologic symptoms or or or problems necessarily had some you know major undetected psychiatric quote unquote problem
And that all I think has resulted in us not making as much progress with F N D as we otherwise would have, if we’d if we’d known more earlier.
Dr. Jeremy Sharp (07:49)
Yeah, yeah, that makes a lot of sense. And of course, I mean any any history of medical diagnosis or understanding would not be complete without some kind of malignment of women and you know yeah, yeah. I think that’s just part of the story kind of woven in, unfortunately, over the years, right? And this is just another example. Yes. Well, I think that’s a nice segue to just lay some groundwork. I think it’d be good to revisit.
Dr. Alison Buchholz (08:01)
Yeah, exactly. Yeah. Yep.
Mm-hmm. Mm-hmm. Yeah.
Yeah.
Dr. Jeremy Sharp (08:16)
some of the history of FND and if there’s any more history to talk about. But, you know, l just some basics, like what are the different types, historically, how do we diagnose them?
Dr. Alison Buchholz (08:23)
Yeah, sure, sure.
Yep. Yeah. So again, so this phenomenon has been around since the since the beginning of of human existence as far as we know. I mean, there’s evidence of it dating back to ancient Egyptian times and some of the artworks and early scriptures. So again, this is not a new problem. we’ve just evolved a lot, particularly in the past couple decades in terms of of how of what we know about FND and and therefore how we’re
Dr. Jeremy Sharp (08:37)
Mm.
Dr. Alison Buchholz (08:50)
thinking about it and talking about it and writing about it and assessing and treating it. So yeah, I mean, up up until the past couple decades, the prevailing theory really was that sort of Freudian psychoanalytic, psychodynamic theory that all folks who developed these otherwise unexplained neurologic symptoms must have some sort of major quote unquote psychiatric problem or cause.
and and and certainly don’t get me wrong, I mean lots of of folks, just like lots of folks without FND, lots of folks with FND, sure, do have mental health issues. but but that’s that is neither necessary nor sufficient for developing or being diagnosed with with FND. so again, I think the point is is that we really miss the mark for a long time, assuming that that FND was due.
quote unquote strictly to a psychological problem. and I’ll just maybe go off on a little bit of a a hopefully relevant tangent here about that. I think one of one of the biggest problems I think in in FND and probably frankly lots of areas of medicine that relate to the brain.
Is this dualism or this dichotomy that we’ve evolved into where we think about things as being either neurologic or psychiatric or psychological? I think you know, those of us who who work in this space, probably particularly neuropsychologists, hopefully many of us realize that the brain is the brain and and the mind and the brain are are really sometimes impossible to separate and they really aren’t separate.
Dr. Jeremy Sharp (10:11)
Mm-hmm.
Dr. Alison Buchholz (10:29)
and so I just bring that up because I think that’s another reason why we haven’t been able to help people with F and D as much as we want to. And I think it’s because we’ve gotten kind of stuck in this this sort of false again, this sort of false dichotomy or dualism where we think about things as either one or the other. and and because of that, part of the but part of the sort of
barrier to progress in the evolution of thinking about and acting around FND really has been due to that. So there’s been this debate among among doctors and healthcare providers and researchers about is this neurologic or is this psychiatric? And there’s been a lot of, I think, unhelpful time and energy invested into people arguing for one versus the other. When again, I feel very strongly
that it is it’s all the same and it’s both. And I I actually think for that reason, I really admire institutions and places and spaces where they think about about conditions that affect the brain and and the the functions that the brain subserves as being as being brain problems, right? As as this being a brain science and and and really thinking about these things from from sort of
Dr. Jeremy Sharp (11:40)
Mm.
Dr. Alison Buchholz (11:45)
both and combined neurologic and psychiatric perspective. So I guess what I’m suggesting is that, you know, institutions that have sort of evolved to have brain science or or merge sort of neurology and psychiatry and behavioral sciences groups, I think are are sort of ahead of the curve. And I think that that’s probably going to be that movement and evolution to thinking about these things as intimately connected, if not one in the same
is probably gonna help move things forward. because again, I think that preoccupation with one versus the other causes all sorts of problems.
Dr. Jeremy Sharp (12:17)
Yeah, yeah. Well, I mean, we love our binaries, right? And our dichotomies here as humans is just another example. Yeah. But I’ve totally yeah, I’ve experienced that. I mean, with FND, but also just with other referrals, you know, where th people like bounce back and forth, you know, and like and there’s that question of like, is this neuro or is that is this psychiatric and you know, y’all figure out this part and then go back and somebody else figure out this other part. It’s just it it is murky and hard.
Dr. Alison Buchholz (12:21)
Mm-hmm, mm-hmm, yeah, yeah, yeah, yeah.
Yeah.
Exactly.
Yeah, yeah.
Dr. Jeremy Sharp (12:47)
Patience.
Dr. Alison Buchholz (12:47)
Yeah. Yeah. Yeah. And I and I think that relates back to sort of the other the other direction that we were gonna go here, Jeremy, which was talking more about sort of FND itself and what is F N D, and what does it look like. And I think, you know, your point about sort of the the the binary thinking, black and white thinking, is really relevant to FND because I think, you know, while some things that happen
To humans do seem to be due to one variable, sort of like a main effect, if you will. I think the truth is that most of the things that happen in life are interactions and the effects of interactions. And I think that’s so, so, so, so, so true in FND. And I think that’s probably part of the reason that a lot of people have been intimidated by FND, and we don’t have as many people sort of.
Joining our forces as we need, because it’s really complicated and it’s not easy. And it it doesn’t it we we really cannot do justice by breaking this down into any sort of binary dualist sort of dichotomy kind of thinking. and so I think that that, to your point, as humans, that’s sort of our natural tendency is to to want to break things down into the most basic.
way that we possibly can. And I think again, that’s just something that F and D inherently pushes back on, which is really overwhelming or unappealing or scary to a lot of people. But again, I think back to your original question of why why this for me, those are the things that I tend to be drawn to. And so I think like you said, you know, about about what is FND, that’s that’s sort of along the same lines, it is so heterogeneous.
Dr. Jeremy Sharp (14:00)
Mm.
Dr. Alison Buchholz (14:25)
it it you know oftentimes when when we see patients with FND, they get referred to us because they’re having a specific symptom, like you know, functional cognitive symptoms or functional seizure-like episodes or functional movement problems. those are actually what I just mentioned there are really the most common things we’re seeing these days. Again, sort of the functional cognitive symptoms, particularly relevant, right, to us neuropsychologists.
Dr. Jeremy Sharp (14:32)
Mm-hmm.
Dr. Alison Buchholz (14:48)
functional seizure like episodes and then also functional movement problems like functional tremors, functional gait problems, weakness, things like that. Those are kind of how we think about sort of the three main categories. But again, my point is even even within and across those, there’s so much variability in terms of symptom presentation. So again, while we we oftentimes will get a referral, you know, for one of those problems, once you get to meet somebody with FND,
Dr. Jeremy Sharp (14:56)
Yes.
Dr. Alison Buchholz (15:15)
And and one and certainly once you see enough folks with FND, you’ll realize that probably most often it’s a mixed subtype. Most of the most of the people we see with FND actually probably either have currently or have had in their history multiple different manifestations of FND. so you know.
Dr. Jeremy Sharp (15:32)
Mm-hmm.
Dr. Alison Buchholz (15:35)
Again, to the question of what is FND, to make this even more complicated, at our recent FND society meeting that we had here in Baltimore recently, one of the big themes of the conference, and this is our this is the the first international society dedicated to FND, which we formed almost 10 years ago now, one of the big themes of our conference was our diagnostic criteria, and we’re actually revising those. we so the point is that.
Dr. Jeremy Sharp (16:00)
Mm.
Dr. Alison Buchholz (16:01)
Is that this is again, like I said, a sort of rapidly evolving field where again we’ve learned a lot in the past couple decades, particularly. but we also have a ton left to learn. and so, you know, when we think about FND right now, in terms of of what it is diagnostically and how we diagnose it, we have our DSM5 TR criteria and then we have the ICD 11 criteria, and those are sort of
The two major criteria that folks most often refer to for diagnosing, both here in the US and elsewhere. And that’s already a problem because actually those two criteria are very different. And I was actually giving a talk on this topic earlier today, just and one of the people in the audience pointed out one of the discrepancies between the DSM 5TR and ICB-11 criteria, which is the use of the word voluntary.
in in the DSM the symptoms are described as voluntary. And in the ICD, they’re described as involuntary. So yeah, yeah, it is. It is. And the the use of the word voluntary in the DSM, what that means is what they’re we’re trying to imply there is that the motor cortex is still functional. There’s been no major damage.
Dr. Jeremy Sharp (16:55)
Mm.
That seems like a major discrepancy.
Dr. Alison Buchholz (17:20)
To the actual motor control that the brain could engage in. But the point in FND is that the brain is not receiving the right signals to know that it can control those things. And so the problem though with using the word voluntary is that that to some people implies that it is something that people are consciously engaging in.
Dr. Jeremy Sharp (17:42)
Right. It’s willful, deliberate.
Dr. Alison Buchholz (17:43)
It’s willful.
Exactly. Exactly. and I think I think that’s part of the reason why there is still a lot of confusion for a lot of people about if how this is different than faking. and the the really important thing to know is that it definitely is not faking. as as I think hopefully most of the folks you know listening here know, we have separate
Dr. Jeremy Sharp (17:56)
Right.
Dr. Alison Buchholz (18:07)
words for those things, malingering and factitious disorder. and those are, you know, very specific things, obviously hard to always capture with a hundred percent certainty, but definitely not FND.
Dr. Jeremy Sharp (18:23)
For sure. Yeah, I think that’s a really important distinction. And we are maybe trending a little bit into like myths around FND. I don’t know if you know, that’s not a myth exactly, but it’s maybe a misunderstanding. So are there I mean, are there other things in that under that umbrella that you would call like myths or stereotypes, like things? Yeah, let’s talk about those a little bit.
Dr. Alison Buchholz (18:31)
Uh-huh, uh-huh, uh-huh. Yeah.
Yeah, yeah.
for sure. Definitely, definitely.
Yeah, yeah. I think, you know, just sticking back with the sort of malingering, faking, factitious conversation just for a minute here, because I think it’s really important. so just to be clear, you know, malingering means that a person is intentionally faking something because they can get something secondary from it, like money or winning a lawsuit or whatever. And factitious is.
is a sort of that primary gain, you know, the the attention or sick role. and I think, you know, malingering is easier to to rule in or out because there really has to be that opportunity for secondary gain. So if that doesn’t exist, if someone’s not actively involved in a lawsuit and you can’t otherwise you know appreciate the opportunity for secondary gain, you really can’t suggest that a person is is malingering, right? Because then it could just be factitious. Factitious is more tricky, honestly. I think it’s very tricky because
What that’s really asking us to think about is how might this be reinforced on potentially even a subconscious level, right? By a person. So I think that’s a really tricky thing. But I think, you know, more importantly, again, it thinking about is this is this acting, is this faking or not? I think we have a lot of evidence to sugg to suggest or prove that it is not.
the the most obvious thing that I always that I always bring up is, you know, look, if if this if this person or all these people, millions and millions of people, could be harming themselves intentionally in this way by causing themselves to have these seizure episodes. you know, first of all, why would that make any sense? Why would somebody do that? You know, and then somebody could argue back, well, it’s because they’re getting attention for it. And then I my argument back to that is.
Well, why wouldn’t they go out to Hollywood and not only get attention for it, but get even more attention for it and make bajillions of dollars, right? So I mean that it that that argument of they’re just doing it for attention makes zero sense to me because there’s a lot there’s lots of places and spaces they c that somebody could be putting on an act like this and getting a lot more out of it than just some doctor’s attention. So when doctors say, they’re doing it to get my attention, I think that’s a completely absurd notion. so I just just need to need to say that because cause
Dr. Jeremy Sharp (20:29)
Mm-hmm.
Mm-hmm.
I agree.
Dr. Alison Buchholz (20:50)
Unfortunately
that that misunderstanding continues to to persist. and the last thing I’ll say about that is is that Mark Hallett, who is a fabulous movement disorders neurologist at NIH, who passed away recently and was really the the the US pioneer for for the development of our our FND society, he and others did some interesting neuroimaging studies where they had people fake.
tremor and then they also had folks with functional tremors and looked at them in the scanners and there’s actual the different things are happening in the brain with with both of those folks. So again it’s even on a brain level, it is a different phenomenon when somebody is intentionally faking shaking their hand versus having a functional tremor. yeah. sure. Yeah, yeah.
Dr. Jeremy Sharp (21:34)
Yeah. Could I detour just for a second? I think you know,
that brings up a question that I think is important, which is, yeah, like what do we know about the kind of I got I don’t know if you’d say neurological correlates of F and D? Like what is h happening in folks’ brains as much as we can generalize? I know there you know, there’s a lot to dig into there, but I guess the underlying question is like, how do we know that this is quote unquote a real thing and not you know, not
Dr. Alison Buchholz (21:45)
Mm-hmm, uh-huh.
Yeah.
Dr. Jeremy Sharp (22:02)
Made up kind of situation.
Dr. Alison Buchholz (22:05)
Yeah. Well, you know, the fur the first thing that I always push back on when people ask that question of is this a real thing versus a not real thing, is I ask people to define what is a real thing and what is a not real thing. kind of pushing back on on the on the notion that I was raising earlier of this false dualism or dichotomy between and I I think what p most people mean when they say that is is real, they mean neurologic and not real, they mean psychiatric.
Dr. Jeremy Sharp (22:16)
It’s a good response.
Dr. Alison Buchholz (22:31)
but then we could get back into that whole conversation of how is how are psychiatric or psychological problems not real? in in any case, but I think what you’re really asking, Jeremy, is what do we know about what is happening in the brain that causes folks to have functional neurologic symptoms? And the good news is we know a lot more now than we did 10 or 20 years ago. And it’s again because of
Dr. Jeremy Sharp (22:48)
Yes.
Dr. Alison Buchholz (22:55)
What I was just talking about with the groundbreaking work that Dr. Hallett and others started doing looking at functional MRI scans of patients who have functional neurologic disorders. Because the truth is that with the the level of detail that we we have been able to ascertain from structural imaging until recently, that’s another aside, we’ll get there, until recently.
we were not appreciating any structural differences or or abnormalities with in folks with functional neurologic disorders. And that was sort of one of the ways that we would diagnose this is by exclusion. And we would say, well, there’s no structural or abnormalities, so must be F and D. Fast forward to more recent time, and two things have happened. again, the use of functional MRI scanners, and then also our simultaneous appreciation of positive signs.
Of functional neurologic disorders. So, what we’ve learned from the fMRI studies is that indeed the brains of folks who have functional neurologic disorders are do show differences in the way that the brain is receiving and sending signals from sort of four main hubs. The one hub is the part that takes in sensory information and integrates it into the self. So we’re talking about extrasoception and interoception.
the next part is the part of the brain that that processes emotion, so emotional experience and expression, so the limbic structures, limbic system. the next part is the the part of the brain that controls our sense of self-agency, so the temporoporietal junction. and then finally the the motor cortex and the the the part of the brain that again controls our our motor function and what our bodies and brains ultimately do with all of that information. And so
Dr. Jeremy Sharp (24:20)
Mm-hmm.
Dr. Alison Buchholz (24:37)
again, just sort of in as a summary, that’s what this the studies have sort of converged in showing us is that there’s there is some difference in the way that those parts of the brain are communicating with with one another. and so so I think that that to your question provides evidence of what is happening actually on a a sort of apparent or appreciable or measurable level, something that we can potentially see.
we’re not yet doing those scans clinically, but I think we all look forward to someday where we might be able to, because what that would allow us to do really would be to to say for a given person, here’s the part of the brain that we think is miscommunicating with the other this other part of the brain. And that would really help us tailor treatment. because to be honest, at this point, given we’re not using this those scans for that purpose, that’s that’s sort of where we neuropsychologists that specialize in this area come in. That’s
Dr. Jeremy Sharp (25:20)
Mm-hmm.
Dr. Alison Buchholz (25:31)
Oftentimes what we’re trying to do when we meet with patients with FND is kind of answer that question and say, for this individual, where do I think the dysfunction is? And based on that, how am I going to target the therapy? one more thing I’ll say just to your question about sort of, you know, what evidence do we have to support this being a a a quote unquote real thing? I mentioned how, you know, historically it was this diagnosis of exclusion where it was like, we can’t find another cause, so let’s just call it this.
we’ve evolved tremendously from that, as again of these positive signs that we now know are unique in F and D. So for example, with functional seizures, those are things like long duration of episodes lasting more than a few minutes, eye closure, inability to communicate during episodes, but retained memory of the episodes themselves, pelvic thrusting, back arching, asynchronous limb movement.
Dr. Jeremy Sharp (26:00)
Mm-hmm.
Dr. Alison Buchholz (26:26)
So there are there are numerous signs that that we see specifically in functional seizures that we don’t see in epileptic seizures. and the same for other functional neurologic presentations like functional movement disorders. those are positively identified by distractibility, suggestibility, entrainment. functional cognitive disorder, admittedly, we we have a working positive
Criterion for that and it is internal inconsistency. So that is that contrasting function and dysfunction. But understandably, there’s been some pushback by other neuropsychologists noting that you know, can’t we see that same contrasting function and dysfunction or internal inconsistency in other syndromes like chronic pain or chronic fatigue? So again, the the these diagnostic criteria that I’m talking about.
Dr. Jeremy Sharp (27:17)
Mm.
Dr. Alison Buchholz (27:21)
you know, they’re evolved and they’re better than than they were, but they’re they’re certainly not perfect. And again, it we are actively working on revising and refining the criteria.
Dr. Jeremy Sharp (27:32)
Yeah, yeah, of course. Of course. And it sounds like we do have a much better understanding, even with some of these, you know, these things that you mentioned. So let’s maybe transition to the to the assessment process or the diagnostic process, maybe is a good way to put it. so so as you said earlier, people are not necessarily presenting with hey, I think I have functional.
Dr. Alison Buchholz (27:39)
Yeah.
Yeah, yeah, yeah, yeah.
Dr. Jeremy Sharp (27:57)
Neurological disorder. Right. I mean, they’re presenting with these symptoms, presumably. so yeah, just walk me through like how do you how are you thinking about assessment of FND? are you or is that even a misnomer? Like I am assessing for FND? are you starting somewhere else and then it sort of like emerges along the way? how how do you approach this process?
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Dr. Alison Buchholz (30:41)
Yeah, that’s a great question. And I think the answer is is it probably it depends on the the place and the space, you know, in which a person is practicing and receiving referrals, right? so I can tell I could tell you about, you know, my experience specifically at Johns Hopkins, which I think aligns with with sort of maybe loosely with the way things are handled at other academic medical institutions or at least hospital-based settings.
But I think it might be more helpful to just talk about it more generally, given the fact that there’s so many folks practicing in different places and spaces that are not necessarily academic medical or hospital-based settings. Yeah, so I think thinking about it from sort of a more general, general perspective, I think probably what happens oftentimes, and and this is this is this is actually informed by conversations that I just recently had.
Dr. Jeremy Sharp (31:13)
Yeah, absolutely.
That’d be great.
Dr. Alison Buchholz (31:31)
with folks who are in you know private practice, for example, or practicing in rural settings, just recently at the conference, who who basically shared with me exactly what we’re asking here, which is you know, this is what I’m seeing in my rural private practice clinic, and how do I deal with this? and so what I heard from from folks is that sometimes what’ll happen actually is that they’ll get this vague referral from an internist or a neurologist.
and it’ll say evaluate and treat FND and and and they don’t even know what symptom is making the or sign is making the neurologist or the the internist think this person has FND. and so they don’t even this this this is these are the neuropsychologists we’re talking about. they they have no idea where to even begin. Are they talking about some cognitive issue? Are they talking about some movement problem?
Dr. Jeremy Sharp (32:16)
Mm-hmm.
Dr. Alison Buchholz (32:23)
and so what I advised when I had these conversations at the conference, and what I’ll say again, is that it’s really important, I think, for us neuropsychologists to push back a little bit and to ask our referring providers to be more specific. If if that’s what you’re getting, is you’re getting this sort of vague tr evaluate and treat FND, then I think the first step.
is to is to touch base with the referring provider and and just say, hey, you know, what is making you think this person has FND? because I think what I was hearing at least in these conversations was that oftentimes the referring provider doesn’t even know what FND is. And they might be referring a person because they have chronic pain or chronic fatigue
and the referring provider thinks that that is FND. and to be clear, well, lots of our patients with FND have comorbid pain and fatigue. In fact, the majority do. that in and of itself is is not n is not what we need to diagnose FND. what what we what we really mean when we say someone has FND, and then obviously this goes back to the constant.
Not constant, but ongoing evolution of our criteria, is is what we really mean is that they have a specific sign. So something like seizure-like episodes, or movement problems, or observable, appreciable contrasting function and dysfunction from a cognitive perspective. Again, there has to be a sign, not just a symptom.
Dr. Jeremy Sharp (34:02)
Mm, mm-hmm.
Dr. Alison Buchholz (34:03)
So that’s
what you really want to push back on on the neurologist about is what is the sign that’s making you think this person has a functional neurologic disorder? And again, if you push enough, usually the the response will either be some something that suggests it’s not an FND referral after all, because they’ll end up saying, well, they just they’re just in chronic pain or they’re in chronic fatigue.
and then I would again I would push back and say, well, well, yeah, I’m a neuropsychologist, not a pain specialist or a fatigue specialist. I think if that’s the issue, you know, you might need to to go elsewhere. but oftentimes what what ends up coming from that conversation is that again, indeed, it is one of those three subtypes. So there’s some sort of movement problem that they’re appreciating: shakiness, weakness, inability to move, dis you know, imbalance, some sort of a movement problem.
or it’s like these seizure-like episodes, or it’s this cognitive dysfunction where like sometimes they seem like they’re cognitively intact and other times they’re not. and so once you get that information, then the next thing that you want to do is you want to make sure that the the person referring them to you has good reason to actually think that it’s a functional neurologic disorder. so again, evidence of those positive signs.
That I was talking about. So for whatever, whichever of those three subtypes it is, because again, it’s usually going to be one of those three things, you want to make sure that the referring provider actually has evidence of positive functional movement signs. So things like distractibility, suggestibility, and trainment, positive functional seizure signs, and then positive signs for functional cognitive disorder, which would be that internal inconsistency, contrasting function, and dysfunction.
At the same time, so while I’ve already said that this is not a diagnosis of exclusion, and while we are evolving to refine our criteria to emphasize more the positive diagnostic signs, it is actually very important to also pay attention to comorbid sort of mimicking neurologic conditions, because if those are present present, those can dramatically change the the what is needed from an assessment and evaluation perspective. So
again, you know, thinking about functional seizures for a second here, while I noted that there are specific positive signs for functional seizures. so you know, most often if somebody’s having a 15-minute long episode where their eyes are closed and it’s asynchronous limb movement and pelvic thrusting and they can remember it afterwards, most often, sure, that is going to be functional. But that person could also have epileptic seizures, right?
or the person with a functional tremor that’s really, you know, suggestible and distractable, they could also have Parkinson’s disease. And they often do. These things are often comorbid, and again, they dramatically change what’s needed from ongoing evaluation and treatment perspectives. And so for that reason, not only do we want to make sure that the referring provider has real evidence that there could be a functional.
Dr. Jeremy Sharp (36:48)
Mm-hmm.
Dr. Alison Buchholz (37:02)
Problem, again, functional cognitive, functional seizure, functional movement being the most common. but they’ve that they’ve also done a good job of ruling in or out other coexisting or co-occurring brain-related problems, right? so the the sort of gold standard diagnostic procedure for functional seizures because of the overlap with epileptic seizures and the fact that a lot of our patients tend to have.
Both is continuous video EEG monitoring in an epilepsy monitoring unit. However, back to my point about most people not practicing in places or spaces where they have access to an epilepsy monitoring unit, that is often not possible. So there were actually recently published by the American Academy of Neurology functional seizure management guidelines.
Dr. Jeremy Sharp (37:31)
Mm-hmm.
Dr. Alison Buchholz (37:54)
and so those basically say the same thing that I’m saying, which is that yes, having folks admitted to an epilepsy monitoring unit where all of their different types of episodes can be captured, making sure that we know which ones are epileptic and which ones are non-epileptic or functional, that that’s the gold standard. it in there they admit that you know not everybody has the capacity or capability to do that. and so so it’s okay and it’s often necessary.
for folks to to to go about that in a different way. And so what that often means is home video, so taking videos of episodes and sharing them with your neurologist so they can try their best to differentiate based on the geneology, what they actually see, the signs, and then also doing ambulatory outpatient EEGs and hoping to be able to capture episodes, obviously.
So that’s really the workup for the functional seizures. That’s sort of the diagnostic process. Functional movement symptoms are a lot easier in the sense that those can usually be worked up in just a simple outpatient neurology visit. So the neurologist just needs to take a good history, either have already done and reviewed relevant testing or order relevant testing, and then do a physical exam. And I, in my practice, I work alongside movement disorders neurologists, and we do this together in real time. So I get to sort of see how that looks.
Dr. Jeremy Sharp (38:58)
Mm-hmm.
Dr. Alison Buchholz (39:15)
and usually in that you know hour, two-hour long exam period, we’re able to elicit some of those positive signs, that distractibility and trainment suggestibility with the gait dysfunction or tremor or whatever it is. and so that’s really what’s needed to make that diagnosis. functional cognitive disorder, this is such an interesting topic, and it’s something that we talked about at at the the F and D meeting recently, and then also at our AACN meeting. we’re we’re
We’re all, I think, really curious about, you know, what what is best practice when it comes to to neuropsychological assessment of folks with FND. And unfortunately, we haven’t come to a consensus yet about that, at least not on paper. I think, you know, putting all of the evidence together, both from what’s been written about sort of neuropsychologists’ roles in in FND, there’ve been some some great work by Dr. Van Patten in that area and Dr. Silverberg and Dr. Rush.
Dr. Jeremy Sharp (40:07)
Hmm.
Dr. Alison Buchholz (40:10)
so so you know sort of merging together those those those publications and then also all of our sort of combined clinical experience, where we’ve sort of landed, I think, is is appreciating that best practice at this point is is probably doing comprehensive neuropsychological evaluation for all of our patients with with FND. and the reason for that is is is multiple things.
One is that just like I just mentioned, oftentimes our patients with FND have other relevant brain-based problems or issues that probably are in some way related to the FND, or even if they’re not related to the FND, they might interfere with or interact in some way with treatment efforts around FND. So they’re important to know about.
So I’m thinking about things like intellectual disabilities, learning disorders, autism spectrum, ADHD. If present, all of those things need to be considered when thinking about treatment for someone with FND. And so so you can you can kind of imagine how, you know, how how those comorbid conditions, and then again, things that we’re talking about like epilepsy, Parkinson’s, you know.
If a person has, you know, Parkinson’s or another neurodegenerative disorder like Alzheimer’s disease, those things obviously are gonna dramatically alter the appropriateness of of of one treatment versus the other. So important for us to know. and then also just just for the purposes of understanding the purpose the person’s FND itself. You know, when we think about FND, we think about the the three Ps, you know, predisposing, you know, what what
What risk factors or vulnerabilities does this person have? You know, starting with biological things like genetics, because we know there’s some genes involved, you know, and then you know, all the way through, you know, life events, things that that predispose or make a person more vulnerable for developing this. and then precipitating factors, you know, what may have happened that may have really triggered the onset of this or set it off. And then perpetuating, you know, what do we think is going on in the here and now that’s causing this to maintain or continue? So
Obviously, you can imagine a lot of those questions we can help inform with our with a comprehensive neuropsychological evaluation. Again, this is thinking about folks who have the functional cognitive presentation, at least that being part of their functional neurologic disorder. And then, you know, the the the other thing that the neuropsychological testing or assessment will give us.
Is evidence of that internal inconsistency, that contrasting function versus dysfunction. And one of the one of the play one of the ways that we see that typically in our exams is in, for example, you know, a person will be able to engage in an hour, several hour-long interview conversation with you extensively about their history and their current status and their day-to-day activities, which you know they’re apparently able to do quite independently.
Dr. Jeremy Sharp (42:55)
Mm-hmm.
Dr. Alison Buchholz (43:02)
and then you’ll get them into the testing room and they will just absolutely bomb testing to an extent that we typically only see in folks who have moderate to severe dementia syndromes, right? so yeah, yeah, yeah.
Dr. Jeremy Sharp (43:14)
Sure. Yeah, could I pause could I steer
in this direction for just a second? What’s the relationship between FND and validity testing? Like how do those interact? Yeah.
Dr. Alison Buchholz (43:26)
Great question. Great question. Great
question. So we definitely see failures of PBTs, standalone and embedded PBTs in folks with FND. But the literature on that’s interesting because what it suggests is that the rate of failures is comparable to that in other neurologic conditions. So hopefully, as we all know, we see failures, like for example, with the Tom, right? Test of memory.
Dr. Jeremy Sharp (43:50)
Mm-hmm.
Dr. Alison Buchholz (43:51)
lingering, we see in in folks again with sort of moderate to severe, you know, sort of more advanced dementia, will f will fail the Tom and they’ll they’ll get typically on average it’s something in the high 30s approximately, right? and that doesn’t mean that they’re faking it, right? That doesn’t mean that they’re purposefully doing poorly on the Tom. It’s a reflection of their brain dysfunction. And we see the same thing. We see the same sort of average Tom scores with folks
with functional disorders. And and I think, you know, what’s important about that is that we’re not talking about below chance on a for on a forced choice test, right? We’re again we’re talking about sort of that more gray area. We’re not talking again, you know, on the Tom, we’re not talking about a score of a 10 or a 15 or a 20. We’re talking about a high 30. So again, I think I think clearly what I’m saying is that we do see failures of PBTs, but
Not failures of PBTs like we see in malingarers, right? Below chance, but failures of PBTs that we see again in other in other populations that we know have neurologic dysfunction.
Dr. Jeremy Sharp (44:56)
Right, right. Okay. Yeah, I appreciate you talking about that. this is top of mind. We’ve had a a few adult clients failing P V Ts lately, like significantly. So
Dr. Alison Buchholz (44:58)
Yeah, yeah.
Yeah, yeah.
Yeah. And I think I think just to just to take that all the way home, Jeremy, my advice about that would be ’cause I actually just just saw a patient yesterday, that is exactly what we’re talking about here, where she had a true bona fide functional cognitive disorder and sort of was exactly what I just described, intact ADLs, but then when she got into the testing room, just could not do she couldn’t do it. And it wasn’t and I sat there with her. I mean, my psychometrist told me what was going on and I said, I’m coming in the room.
To you know, to live this. And and it was not for lack of trying, it was not because she was putting on a show. She her brain was telling her that she could not do it. and it’s really fascinating if you see bona fide functional cognitive problems in real life, in real time, because they really look just like functional movement problems. Like if you spend time in in the room with patients with functional movement problems where they just cannot get their foot to take a step forward, it is
very similar to being in the room with somebody with functional cognitive problems where they just cannot get that word to come out of their mouth. So I I I guess the point is, you know, I I I think PVTs with with suspected FND can be helpful because if a person performs way below chance, then maybe that would be evidence that this is not actually FND, this is more like malingering. But I don’t know how helpful they are
Dr. Jeremy Sharp (46:11)
Mm-hmm.
Dr. Alison Buchholz (46:32)
most often because again I think what we can more often see is either folks with FND past PBTs, which is like great, or they fail, but it’s not a meaningful failure in the sense that it implies that they’re they’re faking. And it also doesn’t even imply that they’re not trying their best. Yeah. Okay. That’s all I’ll say.
Dr. Jeremy Sharp (46:50)
It’s okay. Yeah, yeah.
That’s fair. That’s fair. I know we could talk forever about just about P V Ts and what that looks like. So there’s a lot of nuance there. But I appreciate you diving into it a little bit. So let me I wanna talk about the maybe the after the evaluation. So there’s a feedback component, you know, this is really interesting to me. Like how do you deliver feedback? How do you present this idea without invalidating
Dr. Alison Buchholz (46:54)
Yeah. Yeah. Yeah.
Yeah.
Mm-hmm.
Mm-hmm.
Dr. Jeremy Sharp (47:18)
someone’s experience. And then I really want to talk about, you know, treatment and, you know, this area, especially for you of like building programs around this, like how to
Dr. Alison Buchholz (47:19)
Yeah. Yeah.
Yeah. Yeah, yeah,
yeah, yeah. yeah, so I think one of the the you know the the treatment for FND really starts with disclosing the diagnosis. and so I think it’s really important to have a good understanding of what FND is. so I think you know, again, understanding that this is not just a diagnosis of exclusion. I’m explaining that to your patient. Look, you’re you’ve been diagnosed with FND.
Dr. Jeremy Sharp (47:36)
Mm.
Dr. Alison Buchholz (47:52)
Because so and so, whether it’s the referring provider or you, the neuropsychologist and the referring provider or whatever, have identified this and and be specific. Say, you know, you you, when you were in their office or in my office, you had this shakiness in your right hand that, you know, was distractable and it wasn’t trainable. And, you know, it explain to them why you’re diagnosing them with FND, right? Like what is the sign that made
you conclude that they have this diagnosis. and then, you know, understandably, of course, patients will push back and say, well, couldn’t it be, you know, Parkinson’s or or epilepsy or whatever. and then that’s that’s where, you know, that’s where that it becomes relevant again to make sure that people have been worked up for those potentially co-occurring or coexisting conditions. So if if that is a concern, either by the patient or by providers, then
Dr. Jeremy Sharp (48:32)
Mm-hmm.
Dr. Alison Buchholz (48:48)
Then sure, let’s address that, right? Let’s let’s let’s work that up. but again, I think I think talking through these nuances of of literally how is this defined? how is it diagnosed? How how does your presentation and history fit with this diagnosis? And then just having a very open conversation, allowing the patient to ask you any questions they have about that, and being prepared to answer any questions about that, because
The truth is is that that diagnostic conversation can be really therapeutic in and of itself if done right. and if done not right, it can be really harmful and it can really delay a person’s potential to to get better and to get on board with treatment, frankly. so so that’s a large part of of sort of the next step in that sort of feedback conversation is is really just
Dr. Jeremy Sharp (49:32)
Yeah.
Dr. Alison Buchholz (49:40)
helping a person understand the diagnosis and get on board with the diagnosis. And and again, it’s not always an easy process. And so I think being realistic about that and being ready for that and being prepared to address whatever barriers present themselves in terms of folks getting on board with the diagnosis.
being prepared to to address that and deal with that. Again, whether that’s a question about, you know, do I need an additional workup or not? You know, that’s another tricky thing I think about FND is again wanting to be comprehensive, but also wanting to to break oftentimes an iatrogenic cycle of folks getting unnecessary repeat workups that they don’t need, or even having, you know, being treated with medications or surgeries they don’t need. So
Dr. Jeremy Sharp (50:07)
Mm-hmm.
Dr. Alison Buchholz (50:27)
I I’m not suggesting that we go overboard and just, you know, continue to unnecessarily work people up for things. but again, it’s a balance between being comprehensive and not being neglectful, because that’s another thing that historically has has been a disservice to folks with FND, which is that once diagnosed with FND, folks like to assume that every other problem they ever complain of is FND. When again, that is
Definitely not a fair assumption. Folks with FND are not immune from developing other things, right? yeah, so that’s really the the the critical next step is is is that diagnostic conversation and helping folks get on board with that and addressing anything that’s making that hard for them.
Dr. Jeremy Sharp (50:57)
Sure, sure.
Yeah, yeah. Do you have any ideas on and maybe I’m maybe I’m assuming, you know, I don’t work with these folks often. So, you know, there’s I’m I’m maybe creating a problem that doesn’t exist. But, you know, I could foresee getting into a conversation where it’s almost like trying to convince them of the validity of the diagnosis. You know, like you kind of mentioned that maybe they push back and say, like, well, what about
Dr. Alison Buchholz (51:17)
Yeah.
Mm.
Dr. Jeremy Sharp (51:34)
Epilepsy or what about Parkinson’s? And then it’s well, you know, we have this evidence and this evidence and this evidence. Like, how do you avoid sort of getting into like a back and forth, almost like argument, so to speak? Or does that even happen? Am I creating something that doesn’t happen?
Dr. Alison Buchholz (51:35)
Right. Right.
Yeah.
Yeah, no, no, no, no. I think you are not wrong by by thinking that this can be a challenging conversation, but guess the two things that I’ve learned over the years doing this is that typically the problem if a person really really ends up being resistant to the diagnosis, that’s typically due to one of two reasons.
the first reason is because of things that have been told to them or said to them by other medical providers in the past. and what I mean, what I’m what I’m hinting at there is that they’ve either been misdiagnosed with things they don’t have, because just to be clear, that’s it’s much more common for folks to be misdiagnosed with other neurologic conditions when they actually have FND.
Than to be misdiagnosed with FND when they have a different neurologic condition, if that makes sense. So we see a lot more folks who’ve been misdiagnosed with epilepsy, Parkinson’s, MS, strokes, and frankly treated for those things with nasty medications, surgeries, whatever. and they actually had FND all along. We see that much more often than we see folks who have one of those other problems and get labeled as having FND.
Dr. Jeremy Sharp (52:57)
gosh.
Dr. Alison Buchholz (53:03)
And so I share that at first of all, I share that bit of information with patients liberally all the time because I think that’s helpful for folks to know that even though they might be afraid that they have some other neurologic condition when we’re calling it FND, it’s actually much more likely that someone’s gonna call it one of those other conditions when it’s actually F and D. but but yeah, it it is, and I think it’s important for folks to know that. but I think
Dr. Jeremy Sharp (53:21)
Mm. That is interesting.
Dr. Alison Buchholz (53:27)
Back to the to the question of you know when the when the conversate when the diagnostic conversation is challenging, again, I think it’s because people either have been misinformed in the past, either by being misdiagnosed with one of those other conditions that they don’t actually have. and so of course that can be really challenging and hard for someone to wrap their head around when you sit down and you say, actually, these are functional seizures. And and they to your to your point, that’s often a challenging conversation because then they say, Well, how is that possible?
I’ve been told by neurologists for decades that I have Parkinson’s disease, right? so that’s that’s one example of a challenging conversation, but usually with enough time and explanation of and sort of just validation and listening of the person’s experience and sort of apologizing on behalf of the medical system, usually folks are able to kind of move past that because the truth is that most people want to get better. and so
When you explain that this is a diagnosis of hope and there are treatments for this, people usually are able to kind of move past the kooky things they’ve been told in the past by other people and get on board. The other example, though, I will say there are times where we continue to be met with resistance because there are some folks who, in addition to having FND, have have somatic symptom disorders, which the way that we’re
Way that we’re defining that these days in the newest edition of the DSM 5TR is that sort of unreasonable, irrational preoccupation with somatic symptoms that just perpetuates beyond, again, beyond a reasonable, rational point. And so to be clear, we do see folks who have that sort of problem in addition to FND.
Dr. Jeremy Sharp (54:46)
Mm.
Dr. Alison Buchholz (55:08)
and so and that is very challenging. That’s very challenging to move forward with. It’s very challenging to treat when folks have both of those things happening at the same time. but again, the point is I think that most people don’t have either of those things going on. actually I shouldn’t say that. A lot of people come with the the first problem. A lot of a lot of people, I should actually correct that. A lot of people with FND do have.
the first problem. And by the first problem I mean they’ve been misinformed and mistreated by the medical system. And so that is actually just again to be honest, for folks who end up doing more of this work, that is something that you will probably end up spending a good bit of time trying to help remedy and repair.
Dr. Jeremy Sharp (55:48)
Okay. That’s good to know. Yeah. So let’s move on to other treatment. Like, I love the idea that treatment begins at feedback. That’s that’s fantastic. and where does it go from there?
Dr. Alison Buchholz (55:54)
Mm-hmm.
Yeah. It’s true.
Yeah, so great, great question. so the the main sort of therapy for FND is reprogramming. And if if you kind of bring in the conversation back to what I was talking about earlier in terms of what’s the actual sort of neural mechanism for FND and thinking about it as being sort of a network connectivity dysfunction between certain brain areas, the fact that reprogramming therapies work makes a lot of sense, right? Because basically what we’re doing is we’re sort of
Teaching the brain to function in a new, more adaptive way. And so the primary sort of means of reprogramming that we that we utilize are talk therapies, so psychotherapy, and physiotherapy, so hands-on therapies. And just like sort of the dualism that we’ve created with with sort of neuro versus psych, we’ve sort of created the same with with the sort of physio versus psych in terms of the therapies.
and one thing that we’ve kind of realized is that there’s a lot of overlap there too. So in in terms of treating F and D, a lot of the work that, for example, physiotherapists are doing, the the PT the physical therapists and occupational therapists, that is, that they’re doing it when it’s done best, it actually does sort of have a psychotherapy flavor to it. So, you know, they’re there they’re there in the room with the patient real time, helping them get their body to move to take that step.
Dr. Jeremy Sharp (57:24)
Mm.
Dr. Alison Buchholz (57:24)
Well talking
with them about how they’re thinking and feeling about it. So it’s almost like a sort of like a hybrid psychophysiotherapy happening all at once. But I think, you know, in terms of treatment selection for our patients, what we end up recommending really depends, again, on the specific signs and symptoms. So, again, going back to that point I was making about being really clear about.
Dr. Jeremy Sharp (57:28)
Mm-hmm.
Like that.
Dr. Alison Buchholz (57:51)
What are we calling FND? Is it the person’s shakiness? Is it their gait dysfunction? Is it their cognitive problems? Is it their seizure-like episodes? Because again, ultimately, in a lot of cases, maybe one or two of those things we think reflect FND, and the other ones we think reflect something else. So just be very specific about what are the F and D symptoms. So then we know what are we really trying to target in treatment? Because, for example, if a person’s having functional seizures and those are sort of just episodic.
There’s really no target for physiotherapy for that. Whereas if a person has chronic inability to walk or balance or weakness, that’s something or shakiness, that’s something that can be more addressed with a physical hands-on therapy. so it’s really important to know what is it that we’re trying to to treat, and then go from there in terms of what we advise for treatment.
So, in terms of of sort of psychological management, psychotherapy for FND, we don’t actually have published consensus, international consensus guidelines for that, but that is something we’re working on. So there’s a work group from our society where it’s a group of psychologists and neuropsychologists from around the world, and we have been actively working for a couple years now and we’ll continue working, I’m sure, for a couple more years.
on developing consensus around that. but the reason it’s such a challenging project is is again going back to the heterogeneity of the disorder, is be is because it’s so heterogeneous. and because the truth is again, is that the reason it happens for any given person depends on the person, and the reason why it’s continuing to happen for any given person is very person-specific. And so
The truth is, it really does take a thorough neuropsychological FND-informed evaluation or assessment to figure out what’s going to be the most appropriate treatment for this person. We have some fabulous manualized treatments. Kurt LaFrance, Dr. LaFrance, and colleagues published something called Taking Control of Your Seizures. It’s a therapist-guided, manualized workbook. It can be done in 12 or 13 weekly sessions.
Dr. Jeremy Sharp (59:47)
Mm.
Dr. Alison Buchholz (59:58)
it was historically thought of as sort of a CBT approach, but now we’re realizing it’s more than that. So we’re calling it sort of a neurobehavioral therapy. what I love about it is that I think that it really provides the opportunity to to to assess for and address really any potential perpetuating factor that could exist for a person, because it basically walks a person through every dimension of their life to do like a really in-depth sort of analysis of.
you know, how am I interacting with other people, what’s going on in my external environment, what’s going on in terms of, you know, my internal sense of self and the way I’m thinking about things and the way I’m behaving and how that’s interacting with how I’m feeling. you know, it pulls in psychodynamic principles, it pulls in mindfulness things. so it’s it’s really it’s really sort of dynamic. and and it it you know well it’s sort of built in this sort of manualized week by week way.
Dr. Jeremy Sharp (1:00:42)
Hmm. I don’t love that.
Dr. Alison Buchholz (1:00:52)
it certainly can be and I think should be used you know, in a way that’s gonna be most helpful for for each patient. So what I mean by that is there’s there’s some chapters that are maybe more relevant for for some folks than others and some that might be completely irrelevant. And so so that’s a great, great resource. Again, it’s it’s called taking control of your seizures. and Dr. Lafran Lafrance and colleagues have have been developing some some sort of offshoots of that for functional movement disorder and functional cognitive disorder. So same basic sort of
premise and outline, but just specifically oriented towards those other major subtypes of functional neurologic disorder. the problem though, I would say with that in in that we and by problem I mean the reason that we can’t just say everybody should do that, is because several things. one, it it it
in its pure form, it’s it’s a it’s a reading exercise and a writing exercise. so, you know, you can imagine many of our our patients are not reading and writing in English, or reading or writing at all. it it’s, you know, eighth grade or higher level. it’s and really abstract, complex concepts, requires some some real, you know, introspection, and
Dr. Jeremy Sharp (1:01:46)
Mm-hmm.
Dr. Alison Buchholz (1:01:59)
And and also, you know, an another thing that I think is really important to consider when when thinking about treatment is, you know, all of these, all of these potential treatments, you know, the taking control of your seizures framework or anything, or even the physiotherapies, are gonna be it’s gonna be really hard for a person to succeed with those if their sort of fundamentals of their life are not in place.
Dr. Erica Cotton, she she describes it as like a like building a house, like F and D, treating F and D is like building a house. And if the foundation is not intact. So, you know, think about it as Maslow’s hierarchy of needs, right? Like if the person does not have their basic needs met, where it’s kind of silly for us to assume that we’re going to embark on this sort of meta journey with them, addressing all of these sort of abstract concepts. So just to be clear, I I think that’s a really important point.
Dr. Jeremy Sharp (1:02:45)
Right, right.
Dr. Alison Buchholz (1:02:50)
because I think that’s something that actually does happen in practice all the time, is, you know, we psychologists, neuropsychologists get these referrals for for, you know, treat FND. and and I think, you know, again, that’s another area where we need to sometimes push back and say, look, this person is not remotely ready to engage in a targeted FND psychotherapy when they’re unhoused, they have a major, you know, psychiatric comorbidity that’s not being treated, they’ve got another major medical crisis going on.
so again, I think the point is it’s really important to sort of stabilize before we embark on sort of the higher level F and D informed journey. Yeah.
Dr. Jeremy Sharp (1:03:27)
Right. Right. That’s
a good reminder. Yeah. I mean, we can have the best treatment protocol out there or whatever, but if the person isn’t ready for whatever reason, then it’s not gonna go very far. Yeah. Can you talk just a bit, I mean, about like program building? You know, this is a thing, you know, that you’ve spent a lot of time with. What what does that look like? What does that even mean, actually? I think that’s one of those terms that sounds awesome, but the details are a little murky. So yeah, what is that and how
Dr. Alison Buchholz (1:03:36)
Yes. Yes.
Yeah, yeah, yeah.
Yeah. Yeah. It’s like what is that? Yeah, what does that mean? Yeah.
yeah, yeah. I think I think it just means improving care for people with FND. that’s what it means to me at least. And so you know, it at my institution, what that’s meant is basically figuring out what exists for folks with FND. and then trying to really improve on and refine.
Dr. Jeremy Sharp (1:04:00)
Mm.
Dr. Alison Buchholz (1:04:16)
those existing care pathways, if they exist. If they don’t exist and you’re starting from scratch, that’s a sort of a different, a different journey. But I think it’s it’s sort of the same the same goal, which is essentially to build a system that goes about assessing and diagnosing and treating FND.
in the way that we’re talking about today and the way that our you know our society has come to learn and and those of us that do a lot of this have come to learn is indeed best practice. And so again, we’re looking for clear and informed diagnoses. We’re looking for you know really thoughtful, patient specific, sort of targeted treatments. And I think you know one thing that we haven’t explicitly talked about today, but
hopefully is kind of obvious at this point is that this really requires multidisciplinary teamwork. because we’re talking about neurologists being involved, we’re talking about psychiatrists sometimes being involved, we’re talking clearly about us neuropsychologists and psychologists being involved, psychotherapists, case managers, social work, physical therapists, occupational therapists, speech language pathologists.
and so that’s a big part of sort of the program building as well, is you know, when thinking about the care pathways is knowing that we all should be ideally working together to to help our patients with FND. again, admittedly, that’s easier in some places and spaces, such as hospitals, if you’re working in a hospital and you’ve got all those providers.
Dr. Jeremy Sharp (1:05:47)
Right.
Dr. Alison Buchholz (1:05:49)
together under one roof, that’s going to be a lot easier than if you’re in a private practice, you know, or another setting where you’re sort of more isolated. And what I encourage folks to do in those in those practice settings is to try to connect with other local providers from those other disciplines. So, you know, if you’re a neuropsychologist, try to find a local neurologist, a local psychiatrist, a local psychotherapist, some local physiotherapists.
who are at least open to being F and D informed and then sharing with them the information that we have. again, we don’t have published international consensus for everything, but we do for physiotherapies, by the way. There’s a there’s a great article that was published years ago, actually, consensus guidelines for physiotherapies for functional neurologic disorders, which is incredibly helpful as a resource.
For physical therapists, because the truth is, once we do develop these guidelines and provide them as resources for other folks, hopefully what everybody’s gonna realize is that they they have the skills to do this. Most physical therapists, most psychotherapists, they they can absolutely help people with FND. they just have not really learned about how they can do that.
Dr. Jeremy Sharp (1:07:02)
Right.
Dr. Alison Buchholz (1:07:07)
and so I guess the point is is is try to come up with a a local team and then try to to get educated about F and D as much as you can, as quickly as you can. the society, our society to that point, we’ve launched some great training resources, some webinars on the FND Society website, both sort of a basic 101 series and then a more advanced series.
for everybody, you know, involved in FND care. so that’s a great way to do some quick training and education. yeah.
Dr. Jeremy Sharp (1:07:39)
Yeah, that sounds good. That sounds good. You’ve shared so much with us today. This is fantastic and I am super grateful. Are there other resources you might recommend for folks who want to learn more, want to get deeper into this? are you open to being contacted? If not, that’s okay. But if so, how would they do that?
Dr. Alison Buchholz (1:07:53)
Yeah.
Yeah, no, I’m definitely I’m
definitely open to being contacted. I I think, you know, again, I think those of us who are passionate about this are really excited about other providers, particularly, you know, for me other neuropsychologists developing interest here because again, we need we need more help. that’s for sure. So absolutely I’m open to being contacted. we do have another recent initiative from the society is a mentorship program.
so that’s something that folks, I think we have information on the FND Society website about that, but that’s sort of a form a formal way to get into the folds of being mentored by by one of us in terms of you know developing programs or care pathways. and just to be clear, I think you know, when you’re asking about programs, what is a program? I think again it sort of starts with the clinical piece, but then
Once you kind of get the clinical framework down, then you start thinking more about sort of research arms and education and training and all of those things. So that’s sort of part of the program building, at least at sort of a academic medical level as well. But yeah, I think you know the mentorship program is great. and I think other other resources, so again, the society website, and then the FND Hope.
is our is our sort of partner organization for patients and caregivers, which is also a really rich resource. yeah, I think those are those are probably the primary places that I would turn to.
Dr. Jeremy Sharp (1:09:19)
Okay. Okay. That sounds good. Yeah. Yeah. The website sounds very robust and I know there are lots of other resources out there as well, like you named. So yeah, thank you. Thank you for being here. I know that as always we could talk for a long, long time about this topic and go down all kinds of rabbit holes. But yeah, this has been great as you know, a little bit of an overview, but also more of a deep dive into, you know, some of these specific areas I think that are a little more
Dr. Alison Buchholz (1:09:36)
Yeah.
Yeah.
Dr. Jeremy Sharp (1:09:44)
challenging for us as clinicians. So thank you so much for being here.
Dr. Alison Buchholz (1:09:45)
Yeah. Yeah. Well thank you so much for having me.
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