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Back pain. My favorite thing to talk about as a physical therapist. I’m kidding, but not really. Back pain. It’s number one thing I see as a PT. I see it every day. Everybody gets it. It’s It’s all over the place. Um, so in this video, I want to talk about what you should do when back pain strikes. It’s the number one thing I see as a PT. Like I said, I see it all the time. I’ve seen, you know, teenagers with it, older people, obviously, um, middle-aged people like myself. It’s it’s all over the place. And I’ve seen so many different sides of back pain, different types of back pain. And it’s so subjective because again, pain is a subjective experience, right? And especially with back pain, it it’s all over the place sometimes and it can be scary. I’ve had so many people tell me about back pain. Their their back pain hurts more than the kidney stones they’ve had or I’ve had people tell me their pregnancy felt better than their back pain. And they always hurt themselves doing something so mundane like bending over to pick up, you know, something a thing of laundry or picking up something that fell on the floor like a pencil. Someone last week told me that they were trying to tie their shoe and their back just kind of gave out, right? So many different types of stories like this that I hear all the time. It’s happened to me. I remember twisting to grab something for a patient one time and my back felt like it just blew up and it was not fun and I was walking like like Gumby for a while. But, you know, again, scarier than it seems. But so again, this video I want to talk about things you could to do to kind of deescalate the situation of your back pain of your back pain episode because again, it’s always scarier than it seems, but it’s not anything you can’t get over. It’s just the initial shock that always stuns people like, “Oh, I need something drastic for this or I’m damaged forever.” which is not the case because again myself I’ve had really bad back pain for um man I think I had it for about a year and a half uh when I was around 27 28 and it took forever to get better but you know I didn’t do anything besides obviously physical therapy which I love and other things that we’ll talk about but this video again is more so like if back pain just happened and you’re in shock and you don’t know what to do. So, the first thing is more so, you know, especially if you’re watching this and you have like a heating pad on right now or or you’re just kind of chilling trying to stretch it out, terrified to bend over, right? I’ve seen it all the time. Every time someone hurts their back, they’re afraid to do that same move that hurt them initially, right? Like they bent over to to pick up some laundry, right? And they don’t want to do that again. They’re just like, “Oh my god, this is something that’s going to hurt my back again.” Which is not the case. So again, thinking about it this way is your brain sends these signals, these massive alarm signals to yourself, causing the surrounding muscles after the pain episode to just tighten up and to guard and to be super aggressive in that guarding. And they clamp down on your spine like a vice, right? And the intense pain is more so of an emergency threat response. It’s not proof that your spine is broken or damaged. And again, it’s hard for people to kind of think about this, but pain is not always an indicator of tissue damage or damage in general, right? And that’s where we kind of have to deconstruct your pain. So, three-step plan, I’ll talk about it here in a second, but first, let’s talk about red flags. And again, it’s important to screen out anything medically crazy going on, any red flag signs going on because again, back pain can be scary. At the same time, if there’s no none of these red flags, it can be rehabbed. It can get better with physical therapy. So, I’ll I’ll link something in the description about, you know, these red flag signs. I’m not going to read them all out right here, but again, when it comes to back pain, if you’re having sudden loss of bowel or bladder control, if you have numbness or tingling in your inner thighs called saddle anesthesia or in the groing area, if you have if your foot just all of a sudden just drops and it just starts slapping on the ground, that’s a sign of pretty bad nerve damage. We call that foot drop. If you don’t have any of those things and other things I’ll link in the description, again, your pain can be rehabbed. And if all that is screened out, it’s pain. It sucks. I get it. But you need to rehab the pain and work at it. So again, all that signals that we could work on it and it’ll get better with a thorough evaluation and PT plan, which again, I know is not what people want to hear. They want to get better now. It’s it’s a whole process and they don’t want to exercise to get rid of the pain or be active to get rid of the pain because initially movement just feels like a chore and it hurts a lot and it it stinks to move. Um so but again as I I always say we’re living organisms. We need to be moving and adapting. We don’t adapt by doing nothing. We adapt by moving and circulating that blood and joint lubrication and all that good stuff. So, and again, I do want to emphasize that pain is different for everybody. Pain is a subjective experience by definition. It could be different for everyone. And it’s it’s not a one-sizefits-all. I’ll do my best to give some general advice here, but the best thing to do is always to get a thorough assessment by your physical therapist. And if your symptoms are more localized and it’s sharp and it’s more of a guarding type pain, this three-step process that I’ll walk you through will definitely help the pain. So, let’s talk about first some back pain patterns that I usually see when patients come in and see me for physical therapy. Usually, your spine has a preferred direction when it comes to pain. Meaning, let’s say you bent over to pick something up and then again your back just felt like it gave out or blew up. However you want to describe it, it sounds it’s a sudden shock to your system, right? Usually when that happens, your body does not like flexion or bending over, right? And every time you bend over, you get that sharp pain. It hurts. Your muscles guard and it stinks and you don’t ever want to do it again. Usually when that happens, your body prefers extension or arching back. The opposite of flexion or bending forward. So if you were to test this on yourself right now, stand up slowly, place your hands on your low back if you have pain with bending over and try to arch arch backwards. If that feels better, that means that’s your preferred direction right now. Your back prefers spinal extension or arching back. And that’s something we can kind of work on that gives us more clues as a PT to tailor your rehab plan. And again, that’s the usual clinical pattern that I see with with back pain. There’s also the the idea of centralization versus peripheralization, meaning the pain will centralize or peripheralize. And if it centralizes, the pain goes back up into your spine. It’s not radiating anywhere. It’s not tingling down your hip, down your glute, down your thigh. That’s usually more nerve- related usually. Um, again, it’s all it’s it’s always different, but if the pain is more localized in your back, that’s kind of what we want and that’s a better prognosis when it comes to healing your back pain. Um, not to say that if it is peripheralized or radiating into your glutes or even down your leg into your foot that it can’t get better. it it can get better as well. But usually if it centralizes or come comes back towards your spine, that’s something that we want and that’s that’s a good thing. I know it sucks and it sometimes it gets more sharp in your low back, but that’s a better sign that it means that it’s getting better. Okay, let’s talk some more neuroscience of of pain. And I don’t want to get too much in the weeds of this, but it’s more so about spasming and again just pain in general. So, you know, let’s say you bent over and again, you felt that sharp pain or you’re tying your shoe, you’re bending over to pick up a pencil, whatever it is, pick up a sock, um, a book, whatever it is, sharp pain ensued. And think of it as whatever structure in your back just got irritated, a disc, a facet joint, uh, which thankfully I have a little model right here. The discs are these guys in between each vertebrae, which are the bones in your spine. The facet joints are these kind of joints on the side right here. If those get irritated, sometimes your brain makes it more of a threat than it is. And they get irritated for whatever reason. You know, maybe you’re just stuff happened. It’s it was a weird position for yourself. They got a little bit irritated, but again, your brain magnifies it even more. And it’s not necessarily a sign of something that’s crazy damaged. Something irritates those structures doesn’t mean that they’re permanently damaged. The brain activates muscle tension in the area and then a crazy spasm ensues. Right? your spinal erectors, your the quadrus lumboreum muscle, which are these muscles on the side, the erectors that run down your spine, like big long bands of tissue of muscle. And so, think of it more so as the intensity of your pain is more of a measure of your brain’s sensitivity setting, not the actual damage in your back, in the tissues of your back. So, in other words, pain, especially when it comes to back pain, because I, again, I see it all the time clinically, is more so a sensitivity meter than a damage meter. And it’s a big reframe in your mind to think about pain that way. Um, but it’s very helpful when it comes to pain. It doesn’t scare you as much when these things happen. So, let’s kind of walk you through these three steps of what to do when back pain strikes. And quick pause. This video is brought to you by Art of PT. It’s my physical therapy practice here in Neapville, Illinois. It’s all personalized. It’s all individualized. It’s all one-on-one physical therapy. So, if you are an athlete or someone who does the high rocks or plays a lot of pickle ball or jiu-jitsu person or combat sports, you go to the gym all the time, you’re around Neapville and something hurts, I’m here to help. Come check us out. Again, it’s all personalized. It’s not the like the usual corporate physical therapy place where the PTC see three patients at once. It’s all individualized to you. So, check us out. It’s arttopt.com. The link is in the description. It’ll go right to us. Tell us your story. We’ll get you back to 100%. I promise. Back to the episode. The first thing that you want to do, and again, this is more this is customizable to you. So you can customize it as you see fit. I’m going to try to walk you through the process here if this just happened. If again you something happened, you bent over, your back hurts a lot, it’s day one, day two, and it’s still kind of on high alert. So the first thing you want to do is to decompress or turn down the alarm system. And what I mean by that is you can decompress yourself by elevating your legs. There’s a Instagram reel I just did on this and which we can pull up here in a second. And you want to put your calves on a chair in a 9090 position, like 90 degrees of hip flexion, 90 degrees of knee flexion. And when you’re in that position, when your calves are on the chair, what you want to do is take some big deep breaths, relax, try to calm down your nervous system. And again, I did a an Instagram reel, which we can pull up, that is perfectly suited. Here it is right here. So, if you hit play on this, here’s me doing some um cat cows, which we can talk about here in a second, but and me talking, but this is what I mean. So, here’s my feet and my legs are up on a chair. I’m taking big deep breaths, decompress, decompressing my back, trying to get everything to relax. So, we could pause it right there. And then so that’s kind of decompressing and turning down the alarm system. That’s what I mean by decompression is that position I showed you in that Instagram reel. And also regulating your breath, your breathing, which also turns down your nervous system, your sensitivity system, your alarm system, which is your sympathetic nervous system. So different positions for everybody too. Like that’s the one that I found generally that helps people. You could also just lay on your stomach, on the ground, on the, you know, on a bed, um, on lay on your side, whatever position is better for you. Try to breathe, try to relax, try to decompress, but that’s the one that I found that helps a lot of people. Step two is this is a little bit more in the weeds here, but I’ll try to explain as best I can, is you want to find your directional preference, which is what I talked about earlier. Do you prefer extension right now? Do you prefer flexion? It depends on the back pain um and what happened initially. But you also want to reset your positioning or your alignment. Right? A lot of times if people have back pain like let’s say they have you have right-sided low back pain. Right? Now if someone has rights sided low back pain usually not all the time they tend to lean away from the pain. So they develop this posture to get away from the pain which makes sense because it’s a threatening stimuli stimulus. So your body tries to get away from it. So let’s say right side low back pain, they develop like a left side lean to get away from it. So what to do in that instance is if you have that kind of, you know, painful lean away from the pain, you want to do something called wall slides or wall glides, which I don’t have a video on, but I’ll put a link in the description on. Essentially, you want to put your left arm on the wall kind of towards where you’re leaning towards since your pelvis is kind of coming out to the right side because you’re leaning away from the pain. Forearm on the wall. You’re leaning that way. And you want to push your pelvis into the wall a little bit. Kind of correcting that posture to essentially straighten yourself back out as opposed to developing that chronic lean away from the pain because you don’t want that either. You don’t want to be walking around crooked all day. So you want to have do your best to get back your normal alignment and be yourself again, right? So depending if you have a lean away from the pain, you do some wall glides and again after that you want to find your directional preference. You want to find if flexion is better for you, which can happen, or extension is better for you, bending or extending or arching back. Usually people have an extension bias. they like extension for pain that they have bending over. So, I’m going to give you an example of this. So, let’s say again you’re bending over is not your best friend. You hate it. It hurts. It’s it gives you a six or seven out of 10 pain. What you want to do is do the opposite. You want to do some press ups. You want to do some laying on your stomach to have your your spine in a little bit of extension. Press ups. Again, it’s hard to visualize possibly maybe, but I’ll put a video in the description again. And it’s more so laying on your stomach and doing some gentle kind of like cobra poses in yoga, gentle press ups, putting your spine more into extension and generally that relieves the pain of the bending over. So you want to do the opposite of what hurts essentially. So gentle extension, gentle pressing up from your belly helps that type of flexion pain. Also, if people have pain with extension, I’ve seen this a lot with with gymnasts or volleyball players, people who go into forceful extension, they prefer more flexion. And what you want to do with that is more flexionbased treatment, active treatment, like a a stretch into a prayer pose, right? A three-way prayer pose, some sort of flexion that we can teach you as physical therapists. And you want to find which one is better for you. Step three is my favorite and it’s in my Instagram reel. If we could bring that up again. Um, it’s my favorite because it gets you moving more and that’s exactly what I’m doing right there at the end is walking. So, you know, you could call them vascular walks. Uh, walking is great for a lot of things. It’s great for back pain because again, doing them, I don’t know, let’s say every hour, right? You want to find your limit. And if you can only walk for five minutes and the pain starts coming back, that’s okay. That’s your limit for right now. Eventually, you want to build on that. Walking is a natural fluid pump. Circulation, it’s all great for your back. Essentially, what you want to do is not is to do something and to not lay on the couch all the time because that’s worse. Your body gets stiffened up. It gets tighter. There’s no blood flow. Your back starts to get even more tight. It’s a whole cycle. you don’t want to go through. So, what I recommend usually is every hour, get up, walk, whatever you can tolerate, 5 minutes, 10 minutes, whatever you can, and then kind of go from there. Build on it because again, it will get better. And maybe one day, the first day you do five minute walks every hour, the next day you do eight minute walks every hour, 10 minute walks, and then before you know it, the pain is pretty much gone after a week or two. more of a again this is a three-step approach but it’s try to customize it to yourself. So do your best to decompress the area downregulate your nervous system. Step two would be to find your directional preference fix your alignment if needed. And step three is to get more active to walk. It doesn’t even have to be walking. You know an elliptical is fine. Doing some gentle elliptical training is completely fine as well. Walking is just the easiest thing to do because it’s such a human thing to do, right? And you can just get up and start walking. So, very customizable. Customize it to yourself. If you need help, you could obviously message me on Instagram or send me an email. So, that’s the three-step process. I want to walk you through kind of the first 48 hours of, you know, really bad back pain because again, when it, especially when it first happens, it’s like such a huge shock to people that they just start freaking out and they’re like, “Oh my god, I need an MRI or something just I’m everything is my spine is broken.” But so here’s like your little 48 hour playbook. What to do in the first two days. The first thing you want to do is modify your activity. Avoid prolonged static positioning like sitting or laying down all day and just waiting and hoping and praying that it goes away because again prolonged static positioning like prolonged rest increases stiffness in your back. It delays functional recovery. And again the our favorite saying as physical therapists is motion is lotion, movement is medicine. I mean everybody says it now because it’s true. We’re not trying to make you move to hurt yourself more. It’s going to make you feel better better. Initially, it might not feel great, but after a while, you’re like, “Oh, this actually does help.” Because again, blood flow, circulation helps everything. So, first thing to do is to modify your activity. Meaning, don’t just lay on the couch and do nothing all day. Second one is protect. protection I put. Meaning like if bending over does hurt a lot, it’s okay to avoid that for 24 to 48 hours. If you need to pick up something like a grandma and just do a squat and grab something, that’s okay initially, but eventually you want to get out of that and not be afraid of that. So, we start training into more bending over. But again, initially you want to avoid those things because it is so irritable to yourself and your back. So, avoid those things for a little bit. Don’t push it and just try to force it. it’s just going to make your body more it’s going to turn up the alarm signals even more and you don’t want that. So protect it for 24 48 hours. And the third thing to do is to avoid any aggressive stretching, meaning like static stretching, meaning like just, you know, a a prolonged hamstring stretch, a prolonged back stretch, aggressively stretching your low back, your hamstrings, all that stuff. If it’s already super tight and you’re just kind of pulling on it the whole time, it’s again, it’s going to tell your nervous system to just turn up the alarm system even more, your the signals even more, and it’s going to be even more irritable. So, gentle movement, gentle exercises, actually dynamically moving is much better than just prolonged static stretching. So, avoid that. So, again, three things, modify, modify your activity, avoid prolonged rest. Number two is protect the area. If bending over hurts, avoid that for the first 24, 48 hours. And number three is avoid aggressive static stretching because that could just keep pulling on tight tight muscles, making it worse. Hopefully that all made sense. That’s all things I see every day as a physical therapist is explaining these kind of like these this three-step process and you know lifestyle modifications because again initially that shock of back pain is just it’s so it it kind of changes the way you think about pain you know especially when it happened to me I remember when I first had really bad back pain it’s like oh I don’t know what’s going on and again being the physical therapist working in a PT clinic at that time it was just it was it was really bad but you Initially, you want to definitely stay optimistic about it. Nothing horrible is going going to happen. It’s just the first 24 48 hours are always the scariest. And then after that hump, it gets better and better. I promise. So, if you’re someone with back pain and you’re struggling with back pain and you don’t know what to do, you can definitely reach out, especially if you’re in Neapville. Um, my physical therapy clinic is called Art of PT. website is in the description. It’s artf.com. We work with athletes and active adults, people who especially nowadays doing all the high rock stuff, crossfitters. I get a lot of pickle ball people who just jump in and they hurt themselves. I get obviously my jiu-jitsu guys, people who do Muay Muay Thai, uh any type of grappling. Um the average weekend warrior, gym person, gym rat. So, I’m here to help all you guys in Nepville. And it’s all personalized. It’s all one-on-one physical therapy. It’s not the usual physical therapy corporate company who sees four patients at a time or three patients at a time because I remember doing that and I hated doing that. So, it’s all one-on-one. It’s all you get all the attention that you need and that’s how physical therapy should be. So, I’m here to help. Whether if you’re in Neapville or if you’re someone who’s watching and you’re not in the area, we could definitely work together online. I do remote rehab coaching. So, I have a lot of clients with that as well across the country. So, it’s something that I I definitely love. It’s a different set of rehab that we could do a whole assessment through video like this. Uh a full movement assessment, full rehab plan customized to you for your back pain. I I’d love to help you out. And I also have my free newsletter in the description which is called the PT Handbook. It’s completely free. I do a lot of back pain newsletters because again it’s something I see all the time. And so that’s on there. My Instagram, which you pulled up for a little bit, is apt.g. You could message me on there. I’m pretty readily available on there. I’m always kind of posting some reels or or some advice. So, you can message me on there. If your back hurts or something else hurts, your shoulder hurts, your ankle hurts, your you slept weird, and your neck kind of feels funny, and I see that all the time, too. I’m here to help. Um, there’s my Instagram right there. You guys can message me on there. It’s uh something I I definitely I’m very active on, and people message me all the time. So, I love answering your your injury and pain questions. And so, yeah, hopefully this video helped. Back pain. I’ll do more videos on back pain. Such a complex topic, back pain or just pain in general that I’ll I’ll keep kind of adding to these to these videos. But hopefully that all helped and I’ll see you guys next time. Peace.

Welcome To Patty’s Place

SPEAKER_00
0:10

Welcome to Patty's Place, a place where we're going to talk about grief, dementia, and caregiving. I started this podcast in honor of my mom, Pat, who passed away from dementia almost three years ago. I'm your host, Lisa. So grab your cup of tea, your cup of coffee. If you're having that really bad day, a glass of wine, and come join us and know that you are not alone. Today our guest is Lincoln Stollert, and he is a quantum physicist,

What Psychedelic Medicine Can Be

SPEAKER_00
0:32

neuropsychologist, and hypnotherapist, clinical counselor, and author and educator. So welcome, Lincoln, to Patty's Place.

SPEAKER_05
0:41

Thanks.

SPEAKER_00
0:42

So uh you one of the questions you have here is what is psychedelic medicine and what could it be?

SPEAKER_06
0:52

Um well I don't know what to uh uh is the baseline here.

SPEAKER_04
0:59

Okay.

SPEAKER_06
1:00

Because it's been appropriated or it's attempted to be appropriated by Western psychology.

SPEAKER_01
1:09

Okay.

SPEAKER_06
1:10

And it's got a tradition of various cultural and religious uses that are ancient. And um so uh, you know, if people come from the recreational use of the 60s through the 80s and so forth, they'll have one point of view. Okay, if they come from a medicinal or cultural background, they'll have another point of view. Okay, and if they come from this sort of modern psychology, they'll be told of a third point of view.

SPEAKER_01
1:44

Okay.

SPEAKER_06
1:46

So uh they're all kind of different. You know, recreational, it was supposed to be fun, I guess. Uh psychologically, it was supposed to be healing, and culturally it was supposed to be uh enlightening. It could be all of those things, or one positive and the other negative in any mix, really, depending on your experience and your objective.

SPEAKER_04
2:13

Okay.

SPEAKER_06
2:13

So I guess I could say it could be any of those if you have the right approach. Could be fun, could be enlightening, could be healing.

SPEAKER_04
2:20

Okay.

SPEAKER_06
2:21

And if you do it wrong, it could be destructive or not fun, and um, you know, close your mind.

SPEAKER_00
2:30

Okay.

Learning Means Breaking Patterns

SPEAKER_00
2:31

So with your mind, can you kind of explain? Like, how does your brain learn?

SPEAKER_06
2:39

Um, I kind of think that there are two kinds of people: the ones who like to learn and the ones who well don't. Or don't much. I mean, you can't not learn because everything you do is a reaction to your environment. But you can reframe things or you can rearrange things so that in the larger sense your strategy works better and you understand people or situations.

SPEAKER_04
3:12

Okay.

SPEAKER_06
3:14

And it usually happens that to rearrange things involves some conflict with the way things are, are supposed to be, or other people want them to be. So I think learning uh gets in it involves with how willing you are to break the pattern.

SPEAKER_04
3:36

Okay.

SPEAKER_06
3:37

Or to also create a pattern. You may not have one. You may be going into territory that is new and foreign, so you might need to be creative. People often ask for advice. They uh might think that a counselor or a therapist is gonna give them advice. They might think that. And I suppose uh well, unfortunately, I suppose many therapists do that. I mean, it's economics, you know. You give people what they want, you don't sell them a black car if they want a red one. But the fact is they, you know, if they're looking for a red car, they may be just looking in the wrong place. So I think there are tiers of therapists that are incrementally more disruptive in how you think. Okay because in therapy you want to be uh enlightened. So the psychedelics can do that. They're kind of like I'm a kind of an adventure seeker, so they're kind of like jumping out of an airplane, which could be fun and you know, life-changing. It could also be life-ending if you didn't do it right. So I don't think psychedelics are well, you know, psychedelics are not a dangerous class of drugs. They're not like um these other uh analgesics or extreme sedatives that can stop your heart and do other things. So um they're also not well, depending on which drug you're talking about, they're not entirely recreational. I mean, some are, but the really psychedelic ones um they make you too sensitive. And and and often they're not they're not that social.

SPEAKER_04
5:43

Okay.

SPEAKER_06
5:44

I mean, there are things like MDMA, which is a social drug, and cocaine, which is a social drug. But the psychedelics are are relatively quiet and uh inter, you know, you see yourself within, you you you engage your inner self.

SPEAKER_04
6:04

Okay.

SPEAKER_06
6:05

I mean, I I I I guess I know people who take mushrooms and LSD recreationally, but I I couldn't do that.

SPEAKER_03
6:12

Uh yeah.

SPEAKER_06
6:15

I tried with a bunch of musicians to take mushrooms recreationally, but everybody just wandered off into the woods. And and so, you know.

SPEAKER_00
6:24

Yeah. So

Neuropsychology And The Sleep Link

SPEAKER_00
6:25

you're a neuropsychologist. What's the difference between a neuropsychologist and just a regular psychologist?

SPEAKER_06
6:31

A big difference.

SPEAKER_00
6:33

Okay.

SPEAKER_06
6:34

Yeah, a neuropsychologist. Well, again, there are there are types. I mean, you could be a neurologist when you talk about diseases in the neural system, nervous system, or you could be a neuropsychologist, in which case you think about functions and dysfunctions from a neurological point of view. Like what do you what do you react to? Um what are your aptitudes? Uh how how is your emotional balance related to your neurological balance?

SPEAKER_00
7:11

Oh, okay. That's interesting.

SPEAKER_06
7:13

You know, uh things like uh can you relax and go into a calm state, which would be needed to have a good sleep cycle. So people who don't sleep well might have a neurological propensity for anxiety or tension or um you know not wanting to move out of their waking mindset. Because you know when you fall asleep, you have to kind of let go at some point.

SPEAKER_02
7:47

Right.

SPEAKER_06
7:48

And um if if you're neurologically wound up, which could be a psychological thing because you're traumatized or you're under pressure or your environment is is uh tense, but it could also be a habit that you become habitually tense. And see, this is this is the sort of the roundabout situation. If you are habitually tense, even you know, for a week, you tend to create an environment that either supports you, uh, helps you cope, or continues to trigger you. So a high-performance person might get into a high performance job, in which case they're always expected to be able to jump at a moment's notice, and then they could become very stressed. So the the whole thing, so this there's the neurology of what you're what you've adapted to, there's the environment that you created for yourself. Okay, and um there's the psychology of how you're thinking. So a neuropsychologist, well, at least in my point of view, you see, I'm kind of a generalist. I think you have to do all those things.

SPEAKER_04
9:06

Right.

SPEAKER_06
9:06

I think it's makes no sense to insist that only one approach is going to be suitable for anyone.

SPEAKER_02
9:15

Right.

SPEAKER_06
9:16

I mean, even, you know, I have schizophrenic clients, and you say, Oh, that's definitely a neuropsychological problem. But the point is that to some extent they can learn to adjust. They're not going to become not schizophrenic, but they may not become paranoid and uh triggered by the confusion. I mean, it depends. The the most serious ones, I guess I don't get, because you have to be fairly functional to come to a counselor, especially somebody like me who demands you to think and respond somewhat rationally.

SPEAKER_02
9:56

Okay.

SPEAKER_06
9:56

I mean, it it you know, schizophrenics aren't all that rational.

SPEAKER_02
9:59

Right.

SPEAKER_06
10:00

Well, they have their own sense of rationality in my experience, you know.

SPEAKER_02
10:04

Right.

SPEAKER_06
10:05

They'll think one thing which doesn't make sense, but they're consistent sometimes.

SPEAKER_00
10:10

Right, it makes sense to them. Yeah.

SPEAKER_06
10:12

You know, yeah. So neuropsychologist is like, what is that aspect? How much of that is going on? And is it changeable? Or, you know, can it be uh voluntarily changed? I'm not a pharmaceutical guy.

SPEAKER_00
10:28

Uh well, no, and sometimes you that's not always the answer either, you know, pharmaceuticals. Sometimes it just isn't. And I know that I've I've been reading a lot about like somatic with that, and how like you were describing with your nerves, how it almost gets trapped in your body.

Somatic Ways To Exit Crisis Mode

SPEAKER_00
10:49

Like, what are ways that you can, especially like when you're in the middle of being a caregiver or that, you are always tense because things are always going on. Like, what can you do to try to just try to relax your body to get out of that? Because it's hard once it's trapped, you don't even know how to get out of it.

SPEAKER_06
11:08

I generalize again there, you know, don't focus just on your body. I mean, yes, focus on your body, right? But not just on your body. You're recognize that your environment is funneling you, narrowing you into this traumatic situation. Well, traumatic for probably everybody, but uh that you can't live there and be a help. You have to be able to visit in order to empathize.

SPEAKER_05
11:46

But you can't uh believe it's the only reality.

SPEAKER_06
11:53

So that's the psychological answer to your question. And the uh somatic answer is you've gotta let your body adjust to the alternative, which is a non-traumatized so you know, yoga, exercise, breathing, good sleep, um, good diet, these are all somatic things. Okay, becoming aware of the energies in your body, giving yourself time to relax thoroughly, not just in your tense spots, but you know, in your knees and your ankles and your toes and your fingers. So anything that helps you, so playing music is anything that's rhythmic, anything that has a different rhythm instead of the cacophony of crisis, something that has and demands you that's why playing an instrument is good, because it demands you pay attention to it, otherwise you can't do it very well.

SPEAKER_04
12:55

Okay.

SPEAKER_06
12:56

So, you know, a keyboard, a guitar, whatever it is, and you know, to get away from the idea that you have to be good at something in order to do it. I hate that idea that only experts should read, you know, novels or act in a community theater. You know, it's like everything you do can be adjusted to equilibrate your your system.

SPEAKER_04
13:26

Okay.

SPEAKER_06
13:27

Balance is like essential. So I like to walk, I can't do it very well anymore, on a slack line, which is like a tightrope, but it's loose. But you can do the same thing by just walking on a line, painted on the ground.

SPEAKER_04
13:42

Okay.

SPEAKER_06
13:43

I mean, you could try to walk on the curb, but you might fall off.

SPEAKER_04
13:47

Well, yeah.

SPEAKER_06
13:48

Twist your ankle. Exactly. Quite literally. Yeah. But you can walk on a line, which is not all that much easier if you actually try to stay on it.

SPEAKER_00
13:56

Yeah, it's not as easy as it sounds. Yeah.

SPEAKER_06
13:58

Not as easy, right? Because you give yourself excuses to have stepped off it. But if you pay attention, it it focuses you. And getting out of the crisis mentality, it's the same advice I'd give to somebody who's anxious. It's the same stuck state of mind. And again, there's a neurological aspect to it. You've become accustomed to it. You become anxious when you're bored, you don't have the ability to relax, your sleep is disrupted, maybe your gut and digestion is off. And um to some extent, you well, you have a great deal of control. Whether what the effect is, I don't know. Uh I've gained a lot of weight, like I'm almost 200 pounds, I should be 160. I can't seem to lose it. So there's there, and the so is my father. So I think there's some genetic stuff you can, it's just an uphill battle.

SPEAKER_05
14:59

Um, but nevertheless, balance, I think, is critical.

SPEAKER_06
15:07

But I name my business mind strength balance. And I think that was prescient because I keep coming back to balance more and more. So getting balance, if you're a caregiver, you know, first thing is you have to have balance. Because you're not gonna be very helpful if you're out of balance. You're just gonna be sort of talk in hollow, you know, parables. And the next step is to help somebody achieve the balance that you may have achieved, but maybe harder for them because they're physically ailing or mentally ailing. So, you know, the um the story that the people in the presence of the Dalai Lama are in a blissful state of relaxation simply because of his presence. Which is, you know, well, maybe, maybe that's true, but maybe they just want to be blissfully relaxed in his presence. Just the way you might feel that way in a church. But there is truth that a person who uh is grounded and deeply calm is calming. Um it you know, people like dogs as pets.

SPEAKER_00
16:32

Yes.

SPEAKER_06
16:33

And cats too, sometimes. But I have more experience with dogs. And you know, they are they uh they imbue a certain kind of positive attitude and um all the things that dogs do, you know, loyalty and and attention and affection. And it lifts people up. My point is that if you can lift yourself up, you'll lift up the people around you. Well, I mean, if they're willing. Some people aren't, but you know, right, right. Hopefully.

Entering A Loved One’s Dementia World

SPEAKER_06
17:08

I mean, the the caregiving thing is difficult because people with dementia can be unreachable or sometimes unreachable.

SPEAKER_03
17:17

Yes.

SPEAKER_06
17:18

And um, you know, like my mother took a long time to die of Alzheimer's. And in the last few years, I would just come in and play the flute or you know, read to her, but I don't think she was aware at that point. But still, you don't know. You really don't. At some point, you you have to just go on faith that you know you're putting positive energy out, and as long as you're not getting panic back, you're probably doing something positive.

SPEAKER_00
17:54

Yeah, I mean, with my mom, like I said, she she didn't know who I was, but she just thought I was this really nice girl that came to visit her, and so that's just how I, you know, yeah, and best you can do. Right. And I just kind of followed her lead with it, you know, because why upset her? There was no point in upsetting her, you know.

SPEAKER_06
18:13

So if well, you know what the only reason to upset her would be that she wasn't who you wanted her to be.

SPEAKER_00
18:20

Exactly.

SPEAKER_06
18:21

Yeah, you know, forget it. You know, the world moves in different directions from what you want. And you have to follow it or you're not in uh the rhythm.

SPEAKER_00
18:33

And and I think that's the hardest thing for a lot of people when you're dealing with your loved one with dementia, they still want them to be the person that they know, and and they're not.

SPEAKER_06
18:43

Hey, how about your parents? Were they ever the persons you wanted them to be?

SPEAKER_00
18:47

Well, that's yeah, true. Yeah, you know, and it I once I was able to get to that point to just enter her world, it helped so much for me. And I I can think back now and think about some of those moments I shared with her, you know, the like some of the funny things we shared and stuff like that. And it was like, well, so what if, you know, she thought she was at her grandma's house and she was in her memory and she was in memory care. So what? You know, we were at grandma's house, you know. Like what difference did it make? You know, with it. But I know a lot of people have a hard time. Like, how can they not know who I am? And it's like, well, I think on some level they know that you are somebody that they trust, like there's still that bond there, even if they can't verbalize your name.

SPEAKER_06
19:37

You know, I would take it to another level and say that almost everybody you know is not who you think they are. And almost everybody you know has an image of you that's not you. And and sometimes that works out fine.

SPEAKER_01
19:54

Yeah.

SPEAKER_06
19:55

Yeah. And other times, you know, it temporarily gets dislocated. And with some people, maybe quite a lot, it never works out. Yeah, they never understand you. You can explain yourself all day, and that gets to a deeper level of how do you communicate. And most people use words and reason and you know how things work. And that's actually a very weak, a very not not a very convincing way to um reframe things for somebody who doesn't believe it. I mean, I have a client who has a problem with her mother. Her mother is getting older and probably getting a little more demented. And her mother believes certain people in her family are against her, you know, are lying, are are sabotaging. And it seems to be that the people that her mother is developing this adversarial relationship with are the people that her mother was never close to, and that her mother feels are taking something away from her, taking her central role in the family away from her, like her children's in-laws or something. And uh, my client is one of the in-laws, or actually the the daughter of the mother who has in-laws, and she tells me all the reasons that she's given to her mother why she's delusional and why these people are not her enemies and why everyone's trying to help. It makes no difference at all because her mother is not in that frame of mind. She doesn't believe it.

SPEAKER_02
21:38

Right.

SPEAKER_06
21:39

She thinks her daughter's she thinks her daughter is delusional and being misled and uh making up stories. And so it's you know, it's like climbing up a greased pole. It it doesn't work. And so I tell her, you've got to let go of what you want and indulge her. In her fantasy, because that's her reality.

SPEAKER_05
22:02

You're not gonna build a better structure in a land that she won't join you.

SPEAKER_06
22:12

So if it means that you have to admit that your husband is evil, see where it goes.

SPEAKER_02
22:20

Right.

SPEAKER_06
22:20

Because it's only it's only a story.

SPEAKER_00
22:23

Exactly. Yeah. Yeah. And I know um my dad had a hard time with that. And even like, you know, oh well, I'm lying to her. I'm like, well, you're not really lying, you're just going along with things. You know, that's her world right now. And you know, just go with it because it makes life so much easier.

SPEAKER_06
22:42

Not just easier, but it actually I think goes somewhere. There, there is there is a plot to this demented story. And maybe it comes back to their childhood if somebody's really senile and they're talking about, you know, they think you're their mother or something. I think my mother in the end was well, not in the end, she didn't have money in mind at all, but before she lost her mind entirely, she thought she was a child again.

SPEAKER_01
23:08

Yeah.

SPEAKER_06
23:09

And so that that, you know, that might have been a real opportunity because I never really connected with my mother in her childhood, and I don't think she ever did either. So maybe this was an opportunity to find some peace. You know, uh I would look at all these things as opportunities. Why not? Even if they're just an opportunity to meet somebody halfway.

SPEAKER_00
23:42

Yeah, I mean, I always say that I was grateful that I listened to my mom growing up, all her stories, uh, you know, that she would say about, you know, talk about her aunts and uncles and all that. So like she did go back to like her childhood, which on one hand, I wasn't shocked because it was um a happy time, but also a traumatic time for her. And so I think that's where she found the most peace, you know. So I was glad that I paid attention and was able to enter that world so I knew where she was at with things. So when she would mention somebody's name, I was like, oh yeah, you know, and just go with it. It just made it I I guess, yeah, like you're saying, I was able to connect with her even on another level than before with that.

SPEAKER_05
24:29

I I'm not sure it's so it should be hard.

SPEAKER_06
24:33

Uh I the hard people are the ones who really fight you and insist that you're wrong or you're you're you're somehow distorting things or if you've got somebody who who has a happy place and this is what I do as a hypnotherapist I take you to a happy place.

Hypnosis, Boundaries, And Real Change

SPEAKER_06
25:03

I get you to visualize a happy place, I get you to be immersively engaged in it, uh to recreate it, to recall it in its detail. And then I let you bring in negativity.

SPEAKER_01
25:16

Okay.

SPEAKER_06
25:18

And you know, see it from uh a different, you know, since instead of being off balance, now you're on balance. You know, f imagine your childhood better or the times you're on your childhood was better, and now see what the negative influences in your life trigger or remind you of or make you feel. Because as adults we lose connection with our childhood feelings. We've put them aside. Yeah, people say.

SPEAKER_02
25:53

Yeah.

SPEAKER_06
25:54

As if they weren't there anymore. But they are in the background. And they come up in your dreams and they come up in your nightmares or fears or so for me, therapy, if you want to call it therapy, uh and I you know that has a stigma, so I don't really like calling it therapy. I I prefer calling it coaching or consulting. And I prefer to focus on what you're trying to accomplish rather than what you consider your disability. Like, all right, so what do you want to do in the next year, five years, or ten years? And how can we get there? What's holding you back, what's standing in the way? And how can we turn that into a either not a problem or part of the solution? Most people have skills they're not using because they've uh not been encouraged or rewarded or had the opportunity to use them. You know, you could be you could be very critical, and that could be a skill. Just know how to use it. It you could be very critical because you've spent your life not having boundaries and you know, running over safety margins, and now you've become hyper-reactive. Well, all right. A lot of people don't have good boundaries. I mean, in a sense, you're you're talking about boundaries when you talk about adjusting to a parent's dementia. It's like, what's your boundary? What's the room you want everyone to be in? How do you feel when it doesn't work? You still have boundaries, like your own sanity and health and positive attitude, but it doesn't have to be limited to your version of reality. Could be could be a psychotic version of reality. Well, maybe not psychotic, but you know, delusional at least.

SPEAKER_00
27:52

Right. And I think that is hard for caregivers and sometimes people in general. I know myself, setting boundaries and sticking to them are are can be very difficult for people to do, you know, because sometimes you just want to make everybody happy or make it easier or or or even or just more peaceful, I should say. And sometimes you have to set those boundaries, and it can be very difficult.

SPEAKER_06
28:16

Well, the funny thing is they want you to set they want you to make things easy. And maybe they, whoever they is, doesn't want you to cross certain boundaries. You know, like if you've got somebody who smokes and their lungs are not good, is making them happy avoiding the issue or asking them to confront their health and what they're doing. Because I I've kind of run out of patience with people who are self-destructive unconsciously. I mean, if you want to go, I have one client who tried to kill himself by drowning.

SPEAKER_03
28:58

Uh-huh.

SPEAKER_06
29:00

But he had to stop because he it was too painful. The water was too cold. And I thought, well, how often do you do you uh are you saved by your bad planning? Usually it goes the other way.

SPEAKER_02
29:14

Right, right.

SPEAKER_06
29:15

But you know, okay, that really was a a reality check for him. And he's you know, and it made him think, yeah, suicide would be great if it was just comfort and peace. But it's not just comfort and peace. Well, maybe if you shoot yourself, it is because you don't have a chance, but it was great that he gave himself a chance to see that he wanted to live.

SPEAKER_02
29:40

Right, right.

SPEAKER_06
29:40

And he had something to live for.

SPEAKER_02
29:42

Right.

SPEAKER_06
29:43

And so often people don't want to be told that they have something to live for, that they're missing the opportunity, or they're not treating their spouse or their children well, and it's gonna they're gonna regret it. They don't want to hear that.

SPEAKER_01
30:01

No.

SPEAKER_06
30:02

But if if that's what you see, maybe that's what you should say. I mean it depends what you're yeah, like you say, is it is your goal comfort and you know, placid social you know, bingo games? Or are you trying to uh foster some evolution in progress? Because I don't I don't find people most people are not they they they're dragged kicking and streaming into their own evolution. So which one do you want to be? Do you want to hold them back with peace and comfort, or you wanna help them move forward by uh you know criticizing some of their decisions?

SPEAKER_01
30:54

That's true.

SPEAKER_06
30:55

And how are you gonna do it?

SPEAKER_01
30:57

Yeah, which it gives them.

SPEAKER_06
30:59

I mean, this may not be the question for a a caregiver. But again, you know, if they're smoking, okay, their doctor will tell them to stop smoking or stop drinking or whatever it is. Stop abusing something, stop abusing their body, take care of themselves, lose weight. I don't know, whatever. So uh, you know, they may not want to talk about those things. I mean, we're not talking about end stage Alzheimer's where I think there's not much you can do that, but you know, provide comfort, if that. We're talking at at a stage where, well, uh anywhere from childhood to uh somewhere where you can react, right? We're talking about dealing with kids too.

SPEAKER_01
31:50

True. True, yeah.

SPEAKER_06
31:53

I mean it I I think one I know kids are very easy to deal with, I find. And I don't know why adults have trouble with their kids. I just don't understand. When you think they're there for you, I don't understand how anyone could think that. But okay.

Resources For Coaching And Self-Care

SPEAKER_00
32:13

So you do have a website, correct? It's uh you just you mentioned it as well.

SPEAKER_06
32:19

Yeah, mind, strength, balance.

SPEAKER_00
32:22

And so on your website, what can people um contact you and other the different some of the resources that they can get?

SPEAKER_06
32:31

Well, I've written a bunch of books.

SPEAKER_00
32:33

Okay.

SPEAKER_06
32:34

And I do like this. The the topic you started with, the psychedelics, is very close to hypnosis. Okay. Altered state, mood, emotion, um, altered reality, reframing. So I generally don't encourage people to do psychedelics unless they're good at balance and they know what they're trying to accomplish.

SPEAKER_00
32:56

Okay.

SPEAKER_06
32:57

I mean, okay, if you can do it recreationally, but you don't have to come to me for that. So, and I also don't really believe in psychedelics as a pharmaceutical solution. I think they're a psychological um accelerant. And you've got to, you know, know how to drive. You don't get into a sports car and drive 150 miles an hour if you don't know how to drive. So don't take a drug that will accelerate your mind and unhinge you if you don't know how to land on your feet. And on my website, I have uh these inductions, they're audio files of me talking on certain topics that are done hypnotically to make you relax, to make you be immersive, to make you imagine. And uh a lot of them are free, not all of them. Some of them have to do with your body and health, others have to do with your state of mind. So if you go on the website and look under products and look under free, free products, you can find a lot of audiophiles.

SPEAKER_00
34:06

Oh, okay. Because yeah, I see. And I think that's Yeah, you've got stuff here on like coaching and sleep. You said medical support, uh learning.

SPEAKER_06
34:14

So those those are areas, right? If you have got medical support is is close to caregiving, except it's self-care giving. And uh sleep is also self-care giving, but most people don't pay much attention to it. They just think it should, they're just entitled to it.

SPEAKER_03
34:30

Right.

SPEAKER_06
34:32

They don't see that it's like half their life, right? The other half of their life. And uh education has always been a big thing with me learning. So there are books there, there's a tab for books, but books take more effort than an audio file.

SPEAKER_00
34:46

Yeah, you're free here. Okay. Yeah, there's some really cool things on here. Uh, so people can check out for it to help.

SPEAKER_06
34:57

And there's one last thing I should mention.

SPEAKER_00
34:59

Yes.

SPEAKER_06
34:59

Again, in the neurology thing, there are tools to stabilize, strengthen, and balance your brain without regard to whatever your trauma or issue is. Just develop focus. I mean, you could call it attention skills. Uh, they're not all that different from balance as in walking a straight line, but they're mentally walking a straight line. Uh people have heard about mindfulness meditation, and it's right. There's a whole range of things. Um, brain training tools, and I think that's foundational. I think too many people overlook or take for granted their mental abilities as fixed, and they're not. They're skills to some extent that you've learned and can relearn and enhance.

Brain Training Tools You Can Measure

SPEAKER_00
35:48

So, what are what are some like brain training tools that people can do?

SPEAKER_06
35:53

Well, the cheapest ones are little headsets that you put on that monitor your brain waves, then you can imagine your brain waves are not that different from your muscular waves, in the sense that when your brain waves are agitated, then you're agitated. So but you can be oddly, you can be physically calm and mentally agitated. So the benefit of these tools, like these headsets, which cost about from one to three hundred dollars, whether you get them new or not, or more, depending how many bells and whistles you want, is that it lets you see your brain separate from your body. So somatic work, great, but also mental work. And as I say, you can be somatically relaxed and mentally wound up. So um addressing those, what they do, you put the headset on, it measures your brain waves, it works with your smartphone and tells you basically your score, gives you an exercise, tells you how you succeeded in the exercise. And then you can pay more. Unfortunately, they they cost, I think, more than they're worth for most people. Everyone's trying to get you to subscribe to some you know monthly charge. And uh so this headset called the Muse M Use gives you a lets you buy a monthly subscription, in which case they look at your particular brain waves and give you a particular exercise. Because the brain waves aren't quite as monochromatic as they make them out to be. They have different areas that that indicate different levels of attention and anxiety.

SPEAKER_04
37:35

Okay.

SPEAKER_06
37:37

So you can be more specific. And but it's it's worth just starting with it, just to sort of get to understand what your brain waves do. And you know, it can go all the way to neurology. But the I guess the point I want to make is not many psychologists know about this, not many neurologists know about it. It's neuropsychology. Unfortunately, it's a somewhat unrecognized area, central area, which is like stupid. It's as it's as if people hadn't discovered good diet.

SPEAKER_02
38:14

Right.

SPEAKER_06
38:14

And all the it's like and they thought just eating junk food was natural and well, anyway, I could go on. Maybe you get the point.

SPEAKER_00
38:26

Yes, yes. It's all important. Yeah. So it is.

Website, Thanks, And Goodbye

SPEAKER_00
38:31

So your your website, and we will make sure you put that on our link as well, it's mindstrengthbalance.com so people can check it all out and learn how to train your brain and try to relax and put it all together because there's a lot to do. Put it together, right? Yes. So thank you so much for joining us today. I you're welcome. It's been very enlightening for me. So I hope everyone has enjoyed our conversation today. So hopefully you have had a good cup of tea, good cup of coffee, or a good glass of wine, and you will join us for another edition of Patty's Place.

Welcome To Patty’s Place

SPEAKER_00
0:17

Welcome
to
Patty's
Place,
a
place
where
we're
gonna
talk
about
grief,
dementia,
and
caregiving.
I
started
this
podcast
in
honor
of
my
mom,
Pat,
who
passed
away
from
dementia
almost
three
years
ago
now.
I
am
your
host,
Lisa.
I
want
this
to
be
a
place
where
you
know
you're
not
alone
and
we
can
have
these
difficult
conversations
and
hope
we
can
just
guide
ourselves
through
this
challenging
times
for
it.
So
grab
yourself
a
cup
of
tea,
a
cup
of
coffee,
or
if
you're
having
a
really
bad
day,
a
glass
of
wine,
and
we
will

Meet The FTD Expert Guest

SPEAKER_00
0:44

get
started.
I'm
very
excited
about
our
guests
today.
So,
because
you
know,
as
I
talked
about
before,
there's
different
types
of
dementia.
So
we're
gonna
talk
about
a
particular
type
of
dementia
today.
So
my
guest
is
Sarah
Lapata.
She
is
with
the
Association
for
Front
to
Frontotemporal
Degeneration.
Hopefully
I
said
that
correctly.
Okay,
welcome,
Sarah,
to
Patty's
place.
Thank
you.
So
thank
you
so
much.
So
what
is
FTD,
as
you
call
it?

What Frontotemporal Degeneration Means

SPEAKER_01
1:17

Sure.
Um,
thanks
again
for
having
me
here
today.
Um,
frontotemporal
degeneration
refers
to
a
group
of
brain
disorders
caused
by
degeneration
in
the
and
damage
and
death
of
the
frontal
and
temporal
lobes.
So
you
may
have
heard
of
frontotemporal
dementia,
frontotemporal
lobar
degeneration,
and
PICS
disease.
Um,
it
presents
with
behavior
or
communication
or
movement
symptoms
and
is
frequently
diagnosed
between
the
ages
of
45
and
60,
which
makes
it
a
leading
cause
of
young
onset
dementia.

SPEAKER_00
1:59

Wow.
So
how
is
it
different
from
other
dementias?

How FTD Differs From Alzheimer’s

SPEAKER_01
2:05

That's
a
great
question.
So
um
when
people
think
about
dementia,
I
think
a
lot
of
people
automatically
go
to
memory,
right?
They
think
about
Alzheimer's.
That's
kind
of
what
people
are
familiar
with.
Um,
but
unlike
Alzheimer's,
memory
often
remains
intact
in
early
stages
of
FTD.
Yeah.
So
you
might
see
um
uncharacteristic
behavior
or
communication
or
movement
symptoms.
That's
the
those
are
the
symptoms
that
um
people
see
with
FTD.

SPEAKER_00
2:40

So
just
like
it's
they're
like
not
their
self,
like
in
the
way
they
react
to
different
things
or
their
feelings
and
stuff
like
that.

SPEAKER_01
2:47

Uh
yeah,
exactly.
Okay.
Yeah.
And
sometimes
one
of
the
things
that
really
stands
out
for
a
lot
of
people
is
they
notice
that
their
loved
one
um
seems
like
they
don't
have
empathy
or
they
seem
apathetic.
Uh,
they
don't
want
to
do
anything
that
they
used
to
want
to
do.
Um,
so
it
can
feel
like
very
confusing.
Um
and
and
that's
and
that's
really
common
in
FTD.

SPEAKER_00
3:12

Okay.

Why Diagnosis Takes So Long

SPEAKER_00
3:14

Why
does
it
take
so
long
to
get
a
diagnosis?
So
I
was
doing
research
on
the
website,
and
I
noticed
that
was
one
of
the
first
things
that
struck
me.
Why
does
it
take
so
long?
Yeah,
that's,
I
mean,
it
really
does
take
a
while.

SPEAKER_01
3:26

Um,
the
average
is
3.6
years
to
get
an
accurate
diagnosis.
Um,
for
some
people,
they
can
get
it
pretty
quickly,
but
for
most
people,
it
is
a
very
long
journey.
Um,
because
I
think
there's
a
lot
of
things
that
goes
into
making
the
diagnosis
challenging.
Um,
one
thing
is
that
FTD
is
what
we
say
um
is
heterogeneous.
So
that
means
like
there's
a
significant
diversity
in
how
symptoms
present.
If
you
have,
say,
like
um,
if
you
have
a
beh
the
behavioral
variant
of
FTD,
it
doesn't
necessarily
mean
that
all
of
your
behaviors
are
going
to
be
the
same
as
someone
else
who
has
the
same
variant,
right?
Okay.
So
it's
not
always
really
easy
to
like
check
the
boxes.
Um
and
then,
you
know,
also
because
symptoms
can
begin,
you
know,
so
much
earlier,
you
know,
in
their
40s
or
even
as
young
as
in
their
20s,
you
don't
automatically
think
it's
dementia
and
you
try
to
rule
other
things
out
first.
So
you
can
go
a
long
time
without
a
proper
diagnosis,
and
that
can
impact
your
relationships,
your
career,
everything.
Um,
and
then
even
when
you
do
finally
try
to
get
a
diagnosis,
um,
there
can
be
a
lot
of
misdiagnosis.
People
um,
it's
frequently
misdiagnosed
as
Alzheimer's
or
psychiatric
disorder,
like
depression
or
bipolar
disorder.
Um,
with
the
movement,
um,
the
movement
variants,
it
looks,
it
can
look
like
Parkinson's.
So
um,
they
can
miss
the
true
underlying
diagnosis.

Which Doctors And Tools Help

SPEAKER_00
5:06

So,
what
type
of
doctor
should
somebody
go
to?
Should
they
start
with
the
neurologist
or
neuropsychiatrist?
Where
where
should
they
even
start
if
they're
suspecting
that
their
loved
one
just
isn't
quite
themselves?
Yeah,
that's
a
that's
great.

SPEAKER_01
5:20

Um
yeah,
so
if
sometimes
if
you
go
to
your
primary
care
physician,
you
might
get
referred
to
a
mental
health
clinician
or
someone
to
kind
of
be
dealing
with
some
of
the
symptoms
that
look
like
something
else.
Um,
but
we
do
know
that
neurologists,
that's
the
way
to
go.
Okay.
Um,
and
actually
on
AFTD's
website.
So
if
anybody
is
thinking,
is
this
happening
to
my
loved
one
or
is
this
happening
to
me,
right?
If
you're
noticing
weird
like
symptoms
in
yourself,
um,
AFTD
offers
uh
diagnostic
checklists
on
our
website,
and
you
can
go
through
and
see
how
much
of
it
applies
to
you,
and
you
can
take
that
with
you
to
your
doctor.
So
you
might
have
a
neurologist
that
you
can
say,
that's
wonderful.
Um,
if
not,
you
could
go
to
your
primary
care
doctor
and
take
that
with
you.
Um,
we
also
have
a
locator
tool
on
our
website
that
has
FTD
specialized
medical
centers
that
are,
that
are
listed
there
too.
So
you
might
be
able
to
find
one
close
enough
to
you.
Um,
but
we
do
know
people
travel
pretty
far
sometimes
to
find
a
specialist
uh
that
would
help
them.

SPEAKER_00
6:33

And
I
did
notice
those
checklists
on
the
website.
I
thought
they
were
pretty
awesome
because
there's
they're
so
simple
to
you
know
to
print
out
and
check
with
it.

SPEAKER_01
6:41

Yeah,
yeah.
And
it
really
gives
you
the
language
to
use
because
sometimes
um
I
think
you
know,
like
as
a
lay
person,
as
someone
without
medical
training,
you
don't
always
know
what
to
say
to
describe
what
you're
seeing
in
your
loved
one,
um,
to
really
have
it
hit
home
with
your
doctor.
So
this
is
really
helpful.
That
kind
of
like
translates
the
behaviors
or
the
issues
and
the
symptoms
to
make
it
um
work
with
your
doctor
so
they
can
understand

Genetics, Testing, And Counseling

SPEAKER_01
7:08

it.

SPEAKER_00
7:08

And
now,
how
uh
how
do
genetics
play
a
role
in
the
form
of
dementia?
Because
I
know
anybody
that's
had
a
family
member
with
any
type
of
dementia,
you
you
start
to
worry
like,
am
I
gonna
get
it?
You
know,
do
you
think
it
plays
a
role
in
this
particular
one
or
or
are
we
not
sure
yet?

SPEAKER_01
7:26

So
we
know
that
in
in
over
half,
about
60%
of
people
who
are
diagnosed
with
FTD,
there's
no
one
else
in
the
family
with
FTD
or
related
conditions.
So
we
refer
to
this
as
sporadic
or
apparently
sporadic
because
we
don't
know
the
true
underlying,
we
don't
know
all
of
the
genetic
causes.
So
we're
still
learning,
research
is
still
moving
forward.
Um,
but
we
do
know
that
about
more
than
half,
60%
are
are
not
um
associated
with
uh
a
genetic
underlying
cause.
Um
but
in
40%
of
the
cases,
we
know
that
there's
a
family
history
of
dementia
or
a
related
neurological
condition.
Um
we've
we
call
that
familial
FTD.
Okay.
And
within
that,
there
is
a
greater
likelihood
of
being
able
to
find
um
a
genetic
variant
that's
associated.
So
of
you
know,
of
all
of
the
cases
of
FTD,
they
will
find
15
to
20%
of
people
do
have
an
underlying
genetic
cause.
Um,
so
it's
not
a
whole
lot,
but
it's
definitely
um
prevalent.

SPEAKER_00
8:38

Okay.
But
I
mean,
yeah,
I
mean,
you're
always
worried,
like,
and
I
know
that
there,
I
know
for
the
other,
excuse
me,
I
know
there's
the
other
types
of
dementia,
there's
like
a
blood
test
or
something
you
could
take.
And
I
always
think,
do
I
want
to
know?
I
don't
know.
You
know,
it's
kind
of
scary
either
way
with
it.

SPEAKER_01
8:54

But
yeah,
and
you
know,
what
we
know
is
that
because
diagnosis
can
be
challenging,
um,
and
they
are
working,
like
the
res
biomarker
research
is
happening.
So
we
are
really
hopeful
that,
you
know,
we
know
like
with
the
Alzheimer's
biomarker
test,
like
you
know
that
that
can
rule
it
out
for
people,
which
is
it's
helpful
to
know
because
if
you
get
the
proper
diagnosis,
it
can
lead
you
to
the
proper
support,
the
proper,
you
know,
the
right
treatments,
the
right
if
there,
you
know,
as
research
is
is
moving
forward
and
advancing,
it
can
connect
you
to
be
able
to
participate
in
the
right
research.
So
if
that's
what
you
want
to
do.
So
that's
um,
yeah,
it's
such
a
hard
decision
though.
And
um,
you
make
a
really
good
point.
Like,
um
you
don't
know
if
you
want
to
know,
or
there
are
pros
and
there
are
cons.
Um,
so
AFTD
does
recommend
that
everybody
meets
with
a
genetic
counselor
um
who's
diagnosed
with
FTD
because
they
can
help
walk
you
through
that
decision
making.
Um,
just
because
you
meet
with
a
genetic
counselor
doesn't
mean
you're
gonna
get
a
test,
but
it
helps
you
figure
out
if
that's
the
right
choice
for
you.

SPEAKER_00
10:06

And
when
you
you
said
like
movement,
so
like
what
are
out
of
the
ordinary
like
movements?

Movement And Language Warning Signs

SPEAKER_00
10:12

Because
you
know,
we
all
like
kind
of
trip
or
fall
or
you
know,
have
those
types
of
things,
but
when
should
you
like
kind
of
get
concerned
on
the
movement
part?

SPEAKER_01
10:21

So
because
FTD
and
and
because
it's
a
progressive
neurological
disease,
you're
going
to
see
things
progress.
You
will
see,
you
know,
it
might
start
out
like
um
with
some
stiffness,
um,
neck
stiffness,
or
tripping,
not
being
able
to
orient
in
space,
falls,
things
like
that.
But
when
it
when
you're
seeing
it
happen
more
and
more,
is
when
you
really
should
pay
attention.
Um
and
that's
something
when
you
would
want
to
talk
to
a
doctor
or
explore,
you
know,
the
diagnostic
checklists.

SPEAKER_00
10:58

Okay.
And
I
also
noticed
when
I
was
on
the
website,
there's
it,
there's
other
uh
conditions
that
kind
of
go
along
with
this,
with
it.
Like
was
it
aphasia
and
a
few
other
ones?
Is
are
is
that
pretty
common
for
someone
then
to
have
like
two
different
ones?

FTD Subtypes Under One Umbrella

SPEAKER_01
11:14

Yeah,
so
I
think
what
you're
talking
about
is
the
subtypes
of
FTD,
so
different
kinds
of
ways
it
can
present,
right?
Um
so
for
there's
a
behavioral
variant
where
you
see
the
personality
changes
and
apathy
or
judgment.
Um
and
then
with
aphasia,
primary
progressive
aphasia
is
more
um
language
and
communication
symptoms.
Um
so
you
could
be
losing
the
meaning
of
words,
or
um,
you
could
know
the
meaning
of
words
and
know
exactly
what
you
want
to
say,
but
you
just
can't
say
it.
You
can't
find
the
word,
um,
or
it
just
doesn't,
your
sentences
don't
look
the
way
they
used
to.
Um
and
there's
also
primary
progressive
apraxia
of
speech,
which
is
kind
of
similar
to
um
that
has
a
little
bit
of
movement
because
it's
the
part
of
the
brain
that
controls
the
muscle
that
makes
your
mouth
make
the
words.
So
you
can't
make
the
words
anymore,
okay.
Um,
but
you
still
know
what
you
want
to
say.
Um,
and
then
there
are
a
couple
other
the
movement
disorders.
Uh,
we're
looking
at
corticobasal
syndrome,
CBS,
um,
that
affects
movement.
Um,
you
see
um
symptoms
that
resemble
Parkinson's.
So
some
that
again,
that
that's
sometimes
part
of
the
diagnostic
challenge
is
that
people
think
that
it's
Parkinson's,
um,
but
then
um,
but
it's
actually
under
the
FTD
umbrella.
Um,
progressive
supernuclear
palsy
is
another
one
of
the
movement,
um
the
movement
variants.
Um,
you'll
see
stiffness,
um
poor
balance,
and
then
also
you
also
see
like
um
a
progressive
kind
of
like
inability
to
move
your
eyes
or
opening
or
closing
your
eyes.
So
all
of
like
it's
there's
so
many
things
that
could
that
fall
under
it.
So
it
is
a
lot
to
take
in.
Um,
but
if
you're
if
you're
experiencing
that
or
your
loved
one
is
experiencing
that,
it
might
be
uh
progressive
uh
supernuclear
palsy
or
PSP.
Um
and
then
also
FTD
ALS.
So
um
they
FTD
and
ALS
can
occur
in
the
same
person.
Um
sometimes
we'll
most
of
the
time
when
that
happens,
you
do
see
symptoms
of
FTD
first,
um,
and
then
they're
followed
by
the
motor
symptoms
with
ALS
afterwards.
Wow.
That's
a
lot.

SPEAKER_00
13:53

Yeah,
it's
a
lot,
it's
a
it's
a
lot.
It's
a
lot,
it
is
a
lot.
Uh
yeah.
How
common
is
this
particular
this
this
how
common
is
FTD?

SPEAKER_01
14:05

Um,
you
know,
it's
considered
a
rare
form
of
dementia.
Um,
we
know
there
was
a
study
that
is
from
2011,
so
it's
pretty
long
ago.
But
it
suggested
between
50
and
60,000
people
in
the
US
have
it.
Um
that
was
a
long
time
ago.
And
we
also
know
that
with
misdiagnosis
and
underdiagnosis,
that's
probably
not
a
completely
accurate
reflection.
Um,
but
it's
um
we
know
that
with
more
understanding,
more
awareness,
um,
more
education
for
healthcare
professionals,
we're
getting
a
better
understanding
of
how
many
people
do
have
FTD.
But
yeah,
it
is
still
considered
a
rare,
um,
disease.

SPEAKER_00
14:53

Can
because
I
know
somebody
can
have
mixed
dementia
as
well.
Like
maybe
they
start
with,
say,
vascular
dementia
or
Alzheimer's.
Can
they
then
get
symptoms
of
FTD
too
as
it
progresses?

SPEAKER_01
15:07

Yeah,
you
know,
with
um
we
what
we
do
know
with
FTD
and
the
progression
of
FTD
itself
is
that
you
could
start
with
symptoms
that
present
like
the
behavioral
variant
and
it
would
eventually
move
into
other
parts
of
the
brain.
Um,
so
then
you
will
see
other
like
language
or
communication
symptoms
or
movement
symptoms
and
the
same
thing,
like
vice
versa.
Um,
and
you
do
you
can
see
that
very
similarly
in
mixed
dementia.

SPEAKER_00
15:35

Okay.

When A Loved One Lacks Insight

SPEAKER_00
15:36

So
this
is
a
question
probably
not
just
for
FTD,
but
anybody
who
has
a
loved
one
with
dementia.
But
I
love
this
question
on
your
website.
Why
does
my
loved
one
uh
can't
why
can't
they
acknowledge
their
FTD
and
the
impact
on
the
family?
Yeah.

SPEAKER_01
15:55

You
know,
that
one
is
such
that's
so
difficult
for
caregivers.
Um,
and
we're
also
really
learning
that
it's
difficult
for
persons
who
are
diagnosed.
Um
so
the
term
that
we
use
for
this
is
called
anasygnosia.
That
means
a
lack
of
insight
into
their
own
condition.
So,
you
know,
it's
it
can
be
on
a
spectrum,
um,
but
it's
not
denial.
And
it
feels
like
denial
and
it
feels
like
manipulation.
So
it
is
just
so
hard
for
care
partners
and
family
members
to
witness
that
in
their
loved
one
if
it
just
seems
like
you're
saying,
here's
here's
the
medical,
here's
your
record,
and
it
says
you
have
FTD.
Um,
but
their
loved
one
says
that
nothing
is
wrong
with
me.
I
don't
know
what
you're
talking
about.
I
I
don't
do
that.
Um
so
it's
something
that's
really,
really
difficult,
and
it
is
a
it
is
a
common
symptom.
Um,
but
again,
it's
it's
truly
part
of
the
disease.
Someone
with
who's
who's
experiencing
this
really
truly
can't
help
it.
Um
but
we
work,
you
know,
with
care
partners
to
support
them
as
they
face
it
and
adapt
to
it.
Um,
they
deserve
that
support
and
validation.
And
um
it's
also
part
of
the
diagnostic
challenge,
too,
because
if
somebody
doesn't
believe
that
something
is
wrong
with
them,
they
truly
can't
see
that
something's
wrong
with
them.
It
really
makes
it
difficult
for
them
to
agree
to
go
to
a
doctor
and
get
evaluated.
And
so
that's
something
that
AFTD's
helpline
staff
is
really
good
at
working
with
family
members,
care
partners,
um,
to
talk
about
like
what
are
different
strategies
you
can
use
to
approach
this
symptom
because
it
is
it's
really,
really
difficult.
Um
and
one
another
thing
is
really
joining
a
support
group
because
you
can
connect
with
other
people
who
are
going
through
this
too,
and
you
feel
like
so
much
less
alone
in
this
in
this
part
of
it.

SPEAKER_00
18:07

My
mom
had
that
symptom,
even
though
she
wasn't
diagnosed
with
FTD.
She
she
ended
up
uh
they
they
said
she
was
diagnosed
with
mild
to
severe
dementia,
and
actually
on
her
death
certificate,
they
listed
vascular
dementia.
But
it
was
when
I
finally
went
on
the
Alzheimer's
Association
website,
and
I
saw
I
can
never
say
that
word,
but
I
saw
what
it
was,
and
I
was
like,
that's
her.
Like
she's
she's
not
in
denial,
she
just
thinks
everything's
fine.
And
then
my
dad
had
a
hard
time
with
it,
you
know,
to
admit
it.
And
you
could
not
say
the
word
demonstra
around
her,
she
would
get
so
upset,
you
know.
So
we
just
never
did,
you
know,
and
it
it
took
it
does
take
a
while
to
accept
that
that
they're
not
fighting
you.
They
just
really
don't
understand
that
this
is
what's
happening
to
them.

SPEAKER_01
18:58

Yeah,
absolutely.
And
it
is
one
of
those
things
um
that
we
do
really
try
to
support
caregivers
and
um
family
and
friends
and
um
and
persons
who
people
who
are
diagnosed
too,
because
they
they
can
sometimes
see
it.
The
lack
of
insight
doesn't
mean
like
a
complete
lack
of
insight
all
the
time.
Um,
it's
a
spectrum.
So
sometimes
people
can
see,
like
they
do
know
they
have
FTD,
but
they
don't,
they
may
not
be
able
to
see
everything
that
is
happening
from
the
care
partner's
perspective.
So
it
can,
it's
just
devastating
for
them
too.
Um,
I
think
the
more
we
get
to
understand
what
it's
like
to
live
with
a
diagnosis,
we
are
developing
much
more
compassionate
responses
to
each
other
um
and
just
being
able
to
be
there
for
each
other
because
it
is
it's
really,
really
hard
for
families
to
to
address
this
symptom.

SPEAKER_00
19:55

It
is.
It's
it's
very,
it's
very,
very
difficult.
So

The Hard Conversation About Driving

SPEAKER_00
20:00

the
question
of
driving
always
comes
up.
So
when
do
you
step
in
as
a
caregiver
and
say,
I
don't
think
you
should
be
driving
anymore?

SPEAKER_01
20:11

Yeah,
that's
a
really
difficult,
it's
a
difficult
situation.
I
mean,
like
we
talked
about
with
anasygnosia
too,
that
how
can
you
tell
somebody
that
they
shouldn't
be
driving
if
they
don't
even
realize
that
what's
happening
is
actually
happening.
Um
but,
you
know,
because
the
simp
some
of
the
symptoms
of
um
FTD
include
impaired
judgment
and
disinhibition
and
anasygnosia,
um,
that
really
does
raise
red
flags
around
safe
driving.
Um
but
it
is
such
an
individual
decision.
So
I
do
think
we
recommend
um
that
families
consult
with
their
physician
for
support,
navigating
navigating
the
situation
because
um
it
can
be
really
hard.
Um,
and
then
we
do
also
recommend
that
people
call
the
helpline
to
talk
about
different
strategies
to
prevent
harm
or
prevent,
you
know,
accidents
or
or
danger
and
stuff.
And
how
can
you
kind
of
navigate
this
very
sensitive
and
and
tricky
part
of
the
disease?

SPEAKER_00
21:13

I
was
grateful
my
mom,
well,
my
mom
was
never
she
never
liked
to
drive
anyway,
you
know,
she
only
liked
to
drive
local.
And
she
I
think
it's
when
she
she
kind
of
knew
maybe
something
wasn't
right,
but
she
couldn't
admit
it.
My
dad
had
bought
a
car
and
she
was
with
him
when
she
bought
the
car,
but
then
she
just
decided
that,
you
know,
he
bought
this
car,
she
hated
this
car,
this
car
was
too
big,
she
was
never
gonna
drive
this
car,
and
that
was
it.
She
just
wouldn't
drive
anymore.
And
I
looking
back,
I
think
that
was
probably
her
way
of
realizing,
you
know,
maybe
she
shouldn't
drive
anymore.
Cause
it
was
just
like
out
of
the
blue.
She
was
like,
I
hate
this
car,
I'm
not
gonna
do
I'm
not
doing
this.
And
we're
like,
Okay,
okay,
uh,
with
it.
Now,
my
dad,
on
the
other
hand,
who's
gonna
be
80,
uh,
I
don't
know.
That
could
be
a
little
bit
of
a
fight
with
him
with
the
driving.
I
don't
know.
Yeah.

SPEAKER_01
22:01

Yeah,
it
is
hard.
I
do
think
that
a
a
physician
can
really
help
kind
of
navigate
it
and
figure
out
like,
do
you
take
the
do
you
go
to
the
DMV?
Do
you,
you
know,
like
different,
different,
just
different
ways
to
approach
it.
And
each
person
is
so
different,
right?
So
she
was
like,
I'm
not
going
to
do
this
anymore.
Right.
Other
people
still
really
truly
want
to
drive.
And
that's
your
freedom.
That's
your
autonomy.
Oh,
right.
Um,
so
when
so
many
other
things
are
being
taken
from
you,
that
it's
you
can
really
understand
why
it's
so
hard
to
do
to
get
that.

SPEAKER_00
22:32

For
sure.
So
do
you
does
traumatic
brain
injury
have
any
effect
with
FTD?

TBI Risk And Disease Progression

SPEAKER_00
22:41

Do
you
think
do
they
think
that
might
be
a
cause
of
it?

SPEAKER_01
22:45

So
um
FTD
is
a
brain
disease.
Um
it's
not
thought
that
it's
associated
with
a
single
injury
or
a
trauma.
Um
most
people
with
a
traumatic
brain
injury
don't
develop
FTD.
Um,
and
most
people,
a
lot
of
people
with
FTD
don't
have
a
TBI
history.
So
um,
you
know,
it
sometimes
if
it's,
you
know,
um
repeated
severe
head
injuries
could
be
associated
with
FTD,
but
it
doesn't
imply
that
that's
what
caused
it.
Um
just
kind
of
raises
your
risk
factors,
um,
but
that's
not
necessarily
um
associated
directly.

SPEAKER_00
23:32

And
what
should
somebody
expect
as
the
degree
as
the
disease
progresses?
You
know,
like
especially
if
you
catch
it
a
little
early,
you
know.

SPEAKER_01
23:42

Yeah,
um,
so
with
progression,
with
FTD,
like
you
know,
I
said
earlier
that
for
one
person
it's
different
from
other
people,
you
know.
And
one
of
the
things
we
say
is
if
you've
met
one
person
with
FTD,
you've
met
one
person
with
FTD.
Right.
So
we
can't
always
predict
what
it
will
look
like
for
everybody.
Um
sometimes
it
can
be
very
quick.
Um,
and
sometimes
people
can
live
with
a
diagnosis
for
longer
than
a
decade.
Okay.
Um,
sometimes
20
years.

SPEAKER_00
24:15

Oh
wow.

SPEAKER_01
24:16

Um,
so
you
don't
always
know
when
you
get
a
diagnosis
what
that
will
look
like.
Um,
but
you
can
expect
that
as
the
disease
progresses,
um,
it
can
go,
it
will
broaden
from
just
one
area
of
your
brain
um
to
other
parts
of
the
brain
and
areas
of
functioning.
So
if
you
started
um
out
noticing
movement
symptoms,
it
might
progress
to
behavior
symptoms
um
as
time
over
time.
Um,
but
yeah,
the
journey
is
so
different
for
everyone
in
that,
in
that
way.
Um
and
it
can
be,
of
course,
devastating
to
get
a
diagnosis.
Um,
I
think
one
of
the
things
that
can
help
with
the
progression
of
FTD
or
really
any
um
any
cause
for
dementia
is
is
palliative
care.
Um,
you
know,
like
a
real
holistic
approach
to
care
that
includes
the
needs
and
and
desires
of
the
person
diagnosed.
Um,
it
prior
it
preserves
dignity
and
autonomy
for
as
long
as
possible.
Um
and
you
know,
we
do
hear
from
people
who've
been
diagnosed
themselves
that
they
feel
really
overlooked
and
discarded
and
alone
after
receiving
a
diagnosis.
And
palliative
care
is
just
such
a
wonderful
approach
to
holistic
care
that
they
really
do
take
see
the
person
for
who
they
are,
you
know.
Um,
so
not
that
that
will
change
the
progression
of
the
disease,
but
it
does
help
somebody
feel
more
heard
um
and
respected
and
honored
through
the
process.

SPEAKER_00
25:59

And
I
agree
with
you.
Uh,
you
know,
I
think
the
palliative
care
people
push
off,
they
think
that's
only
for
like
at
the
very,
very
end,
but
it
isn't.
You
can
bring
them
in
earlier.
And
most
of
the
time,
too,
they
help
the
caregivers
too.
Yes.

SPEAKER_01
26:14

With
yeah,
and
if
you
are
helping,
if
you're,
you
know,
preserving
dignity
and
autonomy
of
somebody
feels
actually
seen,
um,
it
really
does
help
with
like
escalated
behaviors
or
feeling
really
stressed,
and
it
helps
with
stress
in
the
home
too.
And
you're
right,
like
if
the
caregiver
feels
like
they're
also
part
of
it
and
that
they,
you
know,
and
they
see
their
loved
one
feeling
respected,
then
they
also
feel
um
a
little
bit
of
comfort.
It
helps
um
and
just
it
helps
something
that
is
so
difficult
to
face
and
difficult
to
go
through,
um,
be
a
little
less

Palliative Care And Symptom Treatment

SPEAKER_01
26:48

so.

SPEAKER_00
26:48

Now,
are
there
any
approved
treatments
or
medications
right
now
on
the
market
for
FTD?

SPEAKER_01
26:54

Yeah,
currently
no.
Um
there
is
research
being
done,
of
course.
Um,
but
for
symptom
management,
there
are
some
medications.
So
if
you
have,
um
if
you're
working
with
your
doctor,
um,
your
neurologist,
you
can
like
if
there
are
symptoms
that
are
challenging,
because
a
lot
of
the
symptoms
with
um
FTD
are
very
difficult.
Um,
so
that
you
know,
you
can
you
can
talk
to
your
doctor
about
um
what
kind
of
medication
can
help
with
those
symptoms.

SPEAKER_00
27:22

And
you
mentioned
uh
support
groups,
and
I
noticed
you
have
those
listed
on
your
website
as
well,
correct?

Support Groups, Helpline, And Next Steps

SPEAKER_01
27:30

Yes,
we
do.
And
you
know,
support
is
such
a
lifesaver.
Um,
we
encourage
everyone
to
build
support
early,
however
that
looks
like
for
you.
Um,
we
know
many
caregivers,
um,
a
lot
of
caregivers
don't
even
reach
out
to
our
helpline
until
they're
already
drowning.
So
um
we
definitely
encourage
early
looking
into
what
options
you
have.
Um,
grief
is
just
underlining
throughout
the
FTD
journey.
And
um,
it
really
does
help
that
uh
having
a
support
group.
Some
people
are
resistant
or
they
feel
like,
oh,
I'm
not
into
going
sitting
around
in
a
support
group
and
talking
about
my
feelings.
But
um
we
really
encourage
people
to
try
it.
There
are
real
practical
tips
um
and
and
resources
that
are
shared
in
these
meetings.
And
also
with
FTDs,
especially,
it
is
so
misunderstood
in
like
the
among
the
general
public
that
when
you
find
other
people
who
are
who
are
going
through
this
and
facing
this
together,
that
you
feel
so
much
less
alone.
Um
and
can
really,
and
it's
it's
part
of
respite
too,
you
know,
you're
taking
that
hour
to
talk
to
other
people
who
are
going
through
it.
And
it
really
can
kind
of
help
bring
you
down
um
from
all
the
way
up
here
in
the
stresses
of
caregiving.
Um
and
we
do
also,
so
we
do
have
groups
for
um
for
caregivers
throughout
the
country.
We
do
have
some
that
meet
in
person.
We
have
a
lot
that
meet
virtually
because
that's
really
easy
to
access
for
caregivers.
You
don't
always
have
to
find
somebody
to
take
care
of
your
loved
one.
Um
and
then
we
also
do
have
groups
for
per
for
people
who
are
diagnosed
that
they
can
join.
Because
we
have
seen
in
the
last
few
years
a
huge
increase
in
people
getting
diagnosed
a
little
bit
earlier,
and
they
really
want
that
support
too.
So
um
we've
we've
had
we
do
have
groups
for
people
who
are
diagnosed,
and
and
we
want
to
be
there
and
support
them
too,
because
it's
so
hard
to
receive
that
diagnosis
and
then
what
you
know,
what
do
I
do
with
this?
So
um
coming
together
is
a
really
good
thing.

SPEAKER_00
29:44

And
I
think
one
thing,
and
and
I've
joined
different
support
groups,
and
I
think
what
a
lot
of
people
don't
realize
is
that
when
you
go
to
the
support
group,
whether
it's
virtual
or
it's
in
person,
you
don't
have
to
say
anything
if
you
don't
want
to.
You
know,
you
can
just
listen.
Yeah,
and
I
have
found
I
agree
with
you
a
hundred
percent
that
when
I
started
talking
to
other
family
members
that
their
family
you
know,
their
loved
ones
had
dementia,
there's
this
instant
bond,
and
you
like
just
understand
what
they're
saying.
And
you
even
can
laugh
at
times
about
things
that
they
said
or
did,
but
you
just
they
just
understand.
You
don't
have
to
explain
everything,
you
know.
They
and
it
it
does
make
you
feel
better.

SPEAKER_01
30:25

Yeah,
and
I
think
um
one
of
the
that's
somebody
just
recently
said
this
to
me
that
that
it's
her
tribe,
right?
That
she's
she
went
to
this
group
and
it's
those
are
her
people.
So
they
meet,
you
know,
outside
of
group,
yeah
um,
yeah,
and
and
get
together.
And
it's
just
having
people
you
don't
have
to
explain
yourself
to,
um,
and
that
there's
no
judgment,
right?
And
and
unfortunately,
some
of
the
symptoms
of
FTD
can
really
be
stigmatizing.
Um,
and
people
hesitate
to
talk
about
it.
But
if
you're
in
a
group
of
other
people
who
are
going
through
the
same
thing,
um,
even
if
it's
a
different,
if
it
looks
different
for
everyone,
you
know
you're
not
gonna
get
judged.
Um,
and
that
you're
there
truly
because
you
love
your
person
and
you
want
to
help
them
and
you
want
to
be
there
for
them,
but
you
just
need
to
figure
out
how
do
I
cope
with
this
in
a
way
that
is
healthy
and
safe.
Um
and
you
know,
with
the
FTD
support
groups,
because
it's
uh
a
leading
cause
of
younger
onset
dementia,
a
lot
of
care
partners
are
younger
and
they
sometimes,
you
know,
they
might
try
another
dementia
group,
a
support
group,
and
feel
like
they're
not
around
people
that
get
them
or
that
are
understanding
what
they're
going
through.
So
finding
an
FTD
support
group
can
be
really
helpful
for
you
if
you
don't
kind
of
fit
like
what
you
think
of
when
you
think
of
a
dementia
support
group.
Um,
so
we
do
have
like
groups
for
parents
who
have
young
kids
in
the
home
and
their
spouse
has
it.
Um
and
they,
you
know,
just
and
young
adults
who
are
caring
for
their
parent.
Um,
we
have
a
group
for
17
to
26-year-olds
who
can
come
and
and
talk
to
each
other
and
get
support.
So
um,
yeah,
we
have
a
whole
lot
of
groups
on
our
website.
Um,
it's
all
there.
But
also,
if
you're
feeling
overwhelmed
and
I
just
can't
even
look
at
this
list
of
groups,
you
can
call
the
helpline.
And
and
we
know
that
what
sometimes
caregivers
are
just
like,
I
can't
even
do
that.
I
can't
take
that
step.
But
the
helpline
is
there.
Um,
and
I
just,
you
know,
just
to
share
their
number,
I
want
to
shout
them
out.
But
their
phone
number
is
866-507-7222,
or
you
can
email
them
at
info
at
theaftd.org.
Um,
and
you
just
put
it
out
there,
I
need
a
support
group,
and
they'll
help
you
find
the
right
one
for
you.
Yeah,
it's
it's
they
try
to
make
it
as
easy
as
possible.

SPEAKER_00
33:02

And
I'll
make
sure
I
put
that
on
there.
Yeah,
because
sometimes
as
a
caregiver,
you
have
so
many
lists
going
on
that
you're
like,
I
just
can't
right
now.
But
if
you
I
know
something
simple
that
you're
like,
okay,
I
can
call
this
number
or
I
can
send
this
email,
and
it
just
helps
so
much
with
all
of
that
for
it.
Um,
and
I
know
we
could
talk
forever
and
on
about
this
because
it's
such
an
interesting
um,
it's
it's
different
than
a
lot
of
the
other
dementias,
but
yet
it
kind
of
falls
into
play
with
it.
And
I
know
this
one
too,
it's
been
in
the
news
a
little
bit
more
with
some
other
celebrities,
famous
people
that
have
we've
heard
they've
been
diagnosed
with
this.
So
like
people
start
talking
about
it.
And
it
should
have
been
talked
about
anyway.
All
the
dementia
should,
yeah.

SPEAKER_01
33:42

Yeah,
that's
but
it
is
really
the
getting
that
awareness
and
and
more
public
awareness
that
people
do
under
they're
like,
that
sounds
familiar.
So
it
is,
it
is
helpful
though.
And
and
we
and
with
that,
we
are
seeing
an
earlier
diagnosis
in
the
in
the
disease.
So
that
is
that
is
just
helpful
for
families
um
when
they
get
that
earlier
accurate
diagnosis.

SPEAKER_00
34:04

Yeah,
because
sometimes
you're
like,
what
is
wrong
with
this
person?
They're
you
know,
and
you
just
you
don't
always
think
right
away,
it
could
be
something
really
you
know,
neurological
or
uh
neurodegenerate
uh
Yeah,
you
think
it
could
be
a
midlife
crisis,
right?

SPEAKER_01
34:21

Or
like,
you
know,
I
guess
I'm
just
gonna
get
divorced.

SPEAKER_00
34:25

But
it's
actually
a
brain
disease.
Yeah.
Yeah.
Yeah,
with
it.
Because,
you
know,
uh
with
all
the
dementia,
some
you
know,
sometimes
they
lose
their
inhibition
and
they
say
things
and
they
do
things,
and
you're
like,
oh
my
god,
what
is
going
on?
You
know,
and
to
help
figure
that
out.

SPEAKER_01
34:40

It's
so
hard
not
to
take
that
personally
too
when
it's
yeah,
when
it's
someone
that
you've
loved
for
like
20
years,
and
then
all
of
a
sudden
this
change
is
happening
and
you
don't
understand
it.

SPEAKER_00
34:51

Exactly.

AFTD Website, Conference, Closing

SPEAKER_00
34:52

So
the
website
is
theftd.org.
Um,
it's
the
AFTD.

SPEAKER_01
34:59

Okay.
Yes.
The
A-A
G-A-F-T-D
dot
O-R-G.
Okay.
And
there's
so
much
information
on
the
website.
Um,
and
there's
also
like
on
the
homepage
and
on
every
page,
there's
a
a
button
for
the
helpline
up
in
the
upper
right-hand
corner.
Okay.
You
can
click
on
that.
You
can
even
schedule
a
call.
So
whatever
works
for
your
time,
you
don't
have
to
wait
for
a
call
back.
You
know
when
you're
gonna
get
your
call.
So
um
that's
definitely
a
great
option,
too.
Um,
and
then
there's
just
so
much
information.
We
have
um
a
ton
of
webinars.
Uh,
we
are
also
on
social
media,
so
um
that
is
something
that's
really
helpful
for
people
too.
We're
on
Instagram
and
on
Facebook,
um,
on
TikTok,
LinkedIn.
Um,
and
I'm
sure
that
I'm
forgetting
one
of
them
too,
but
um
there's
uh
the
the
information
is
there.
We
share
a
lot
of
updates
about
events,
um,
and
and
we
have
an
annual
education
conference
that
is
for
the
community.
Um,
and
also
we
see
a
lot
of
healthcare
professionals
come
too,
and
that's
where
you
really
get
to
know
um
what
the
lived
experience
is
like.
Um,
it
is
in
person
and
it's
also
virtual.
So
um
that's
in
May
every
year,
and
um
it's
free
to
attend.
So
um
it's
something
to
really
put
um
in
the
back
of
your
mind
if
you're
if
you're
thinking
about
it.
Um,
it's
very
informative,
but
it's
also
a
place
to
come
together
with
the
community
and
um
to
learn
more
about
you
know
different
resources
and
um
you
know
evidence-based
treatments
and
things
like
that.

SPEAKER_00
36:43

So
well,
that
that
is
awesome,
all
this
information.
So
I'll
make
sure
I
put
all
this
on
there
so
people
can
get
the
information
that
they
need.
So
thank
you
so
much
for
joining
us
here
today.
I
I've
learned
so
much.
Thanks
for
having
me.
Yes,
I
have
learned
so,
so
much.
So,
like
I
said,
I'll
put
it
all
on
there.
So
hopefully
everybody
has
enjoyed
this
conversation
and
you
got
a
lot
of
information
as
well
for
this
particular
form
of
uh
dementia
and
neurodegenerative
diseases.
So
I
hope
you've
enjoyed
your
cup
of
tea,
your
cup
of
coffee,
or
if
you're
having
that
really
bad
day,
a
glass
of
wine,
and
please
join
us
for
another
edition
of
Patty's
Place.