What's the Tea on? FND and prognosis? FND? Let's see. Let me turn the music down just a little bit. I don't know if it's colliding with my voice.

Okay, so, you know, prognosis, that's the word that doctors use. That's like the likely course of an ailment. I couldn't do my full air quotes. The likely course of an ailment or illness, and I don't know if you know, but when it comes to FND, Functional Neurological Disorder, the word likely just makes me laugh because there is nothing that's likely about FND.

Literally nothing that is. The same across the board, except for that we all hate it. I don't say that much, but it, nothing about it is predictable. Nothing about it is going to be the same from one day to the next. Nothing about it is this is what happens by six months, by 12 months, by one year, by five years, this is where you'll be.

None of that is the case when it comes to FND. So if you're new to, if you're newly diagnosed. That's a very kind of scary concept of like, well, what does it look like? What is it going to look like? And we really truly don't know. I wish that the doctors would just say that if anyone has had a doctor just be like, I don't really know, but I'm gonna be with you on this journey, or something along that lines, that would be great.

But most of the time they say, oh, well it's up to you. We'll see what your progress is in like behavior, health or mental health or whatever like that. And the prognosis seems to just be like placed in our hands, which is super weird because when with other disorders and other diseases, that's not the case.

It kind of is like, okay, hey, you have high blood pressure. This is what you need to do so that you don't reach this level. You know, take your medicine, keep your stress down, eat right, et cetera. We'll help you with. Your blood pressure going down. If not, then it could get worse. That's not what they tell you with FND.

Literally. It's like, here's your diagnosis and we'll see again in six months. And so it's just like, well then what do I do between now and six months? What do I do to get better? And they say, well, go see mental health. Okay, well what else? My physical body is ailing and. We don't really know what to do about that.

So yes, so prognosis overall, to say that word in conjunction with FND that makes me laugh is pretty laughable because unlike multiple sclerosis, FND is not like a relapsing remitting or progressive. So relapsing remitting means that like. It comes and goes, and comes and goes, and comes and goes.

Or progressive just means like it slowly gets worse. It over time slowly gets worse. It's neither one of those. So it would be easier to say, this is how it goes, this is how it's going to look. This is what the rest of your life is going to look like. 'cause technically it's a chronic illness, but we don't know what it what to expect, and really.

It's just fluctuating. Really, truly, it's just fluctuating. E and D is one of those things that it can improve or worsen or go into periods of remission. And then worsen or get better out of nowhere, and you don't really know what you did, but there's no clear pattern of relapses. There's no clear pattern of remissions or steady progression or anything like that.

The symptom, the symptoms fluctuate so much that you might feel fine one day, literally one day like on a Wednesday, and then by Friday you feel like a total train wreck. Or maybe you feel wonderful on Friday. And then you feel awful for the next four Fridays. It just, you really never know. So it's really hard, which is why we don't receive no one.

We don't, they don't give out prognosis because there's no way for them to know. Let's get back to the prognosis part. So I wasn't super prepared for the constant back and forth. I wasn't prepared for the unpredictability. I. At all. I was semi-familiar with having an unpredictable and kind of like flare type of disorder because I have ulcerative colitis ulcers on my colon, but this was a whole different level of unpredictable that was always like, okay, hey, I ate the wrong thing and now I'm flared up.

Not surprised. Or, you know, I went out of town and I'm not eating what I normally eat, and now I'm flared up. Not surprised. FND was on a whole different level. It was like you did the same thing from one day to the next. Let me give you a new symptom or like, Hey you feel great, so let's make you feel awful tomorrow, even though you didn't do anything.

And it was just like what I don't understand. I don't understand what is happening. I don't understand why I feel like crap. I don't understand. If I'm contributing to this or not, I just don't understand. And in all that, not understanding is like, am I getting worse? Am I getting worse? That's the question that I kept asking myself.

Am I getting worse? I don't know if I'm getting worse because new symptoms are coming, but kind of old symptoms that were there or more intense are not there anymore. So am I getting worse? Am I getting better? Is it just changing? Am I making this up? So when it comes to the prognosis that's all that becomes further back in your mind because it's just like, okay, I just first need to know, am I making this up or is this a real thing?

Am I really struggling like this? And am I the only one that's struggling like this? And to those questions, I would say, no. You are not just making it up. You are not at all just making this up. And no, you are not the only one that's feeling this. You are not the only one that's struggling. You are not the first one.

You are not the only one. You won't be the last one. No matter what, even if you are the first person in your area, the first person in your town, the first person in your family, you're not the only one my left. And you are not the first one to fight this fight. So there's lots of people out there and lots of community out there that can definitely help out. That can definitely let you know that you're not alone in this, and so that helps. That is going to help because now we have things like this where I'm able to go live and I'm able to share my story and I'm able to stop and pause and ask you, does the word prognosis feel as useless to you as it does to me when it comes to FND?

What has been your experience with doctors trying to explain to you what to expect? Even though they know that they don't know what to expect, especially not in a case by case basis. Drop me your thoughts or share your thoughts with me via message or whatever, because now we can chat about it. Now we become the experts where the experts have always been the doctors, the experts have always been the practitioners, but now we get a chance to become the experts.

Because we're the ones living it every day. And it's not in a book anywhere. It's not in anything that they can just go look up and say, oh, this is what it says it does on day seven. No, not at all. FND is not that type FND is one of those. You gotta get out of it. You gotta get out of it.

So, I mean, I was mad. I was legitimately so angry and so. Just disturbed and discouraged when I had a neurologist tell me, you're gonna do well with this. You have good insight. I didn't know what he meant at the time. I didn't at all know what he meant, but I do now, and he's right. I did. So I would encourage everyone, like

you get the right kind of insight and you decide that you want your life to look differently. You can do well with this. You can and you will, but with FND, there's nothing likely about it. You can have good stretches, great stretches. You can even go into remission if you're just like, Hey, my symptoms are almost non-existent in comparison to where I've been before.

So. You can have those great stretches, remission, but then out of nowhere, bam, you face one stressful week, stressful month, go through a traumatizing event or something like that, and then symptoms come back, A flare hits, you get a whole new symptom based on like. The way that, you know, if you introduce something new into your diet or you move to a new location or you go on vacation or anything like that's how it goes.

Symptoms can show up one day, disappear the next, and then there that might be some that stick around all the time. So it is very upsetting. It's not degenerative. That is one important thing to note is that it's not degenerative, meaning that symptoms might get worse over time. Even better over time. But in that getting worse, it's not breaking you down, meaning like it's not physically damaging your brain or your body, even though we already feel like, well, what the heck did?

What do you mean? Like I feel physically damaged? The reason why we have such a hard time getting a diagnosis or getting anyone to kind of believe that anything is happening is because there is no actual physical. Evidence of what's going on. That sucks when it comes to getting diagnosed and when it comes to disability and everything like that.

But it also is such a blessing. It's such a blessing that it can't be like, oh yeah, wow, I see a huge mass on your brain, or a huge lesion on your brain and a mass on your spine, or anything like that. It's not like that, which means that it's not actually. Damaging, physically damaging. It's not like you go in for a checkup three years later and it's like, yeah, I really see the FND is taking a toll on you.

It doesn't work like that. So that's beautiful. But it does make the prognosis of it even harder sometimes. It feels like it's impossible to keep up with a body that has no consistency. Sometimes it truly does just feel like we don't know where to start. We don't know how to. Deal. We don't know what to, what we can do in life.

You can't plan anything. You can't keep up with a body that has no predictability. And so with that, there might be some concerns about, well, I'm just gonna keep getting worse because everything is bad. And so that's where it becomes a truly, like a mindset thing. It's more, it's so much more of a mindset issue, so much more of a mindset disorder than it is.

Actually physical and I will go into a whole separate episode, a whole separate thing on that, but it is so much more mindset than it is physical, and that is why it's functional and not structural. I had no idea how intermittent symptoms of flares would be. And so it wasn't just about avoiding triggers, it was the triggers had their own triggers.

And it was as I was learning the actual triggers, there were new triggers being formed, or new triggers being found out. And it was just like as soon as I thought I had something figured out, then my body would throw me a curve ball. And so for anyone that's new to this whole ordeal, new in your journey that is going to happen is that once as soon as you feel like you have something figured out, then it's gonna change and it's frustrating.

I'm not gonna say it's not frustrating, but what I am going to say is know that is normal. Know that is okay and know that the more that happens, the more the closer you're probably getting to understanding and being able to have a little bit better prediction. Because to me there was like certain like symptom sets.

I had certain symptoms set and so I would be like, oh, when I'm close to my period, this happens when I'm angry or stressed out, this happens. When I'm nervous about something or something, I'm unknown. This happens. And so, I started to learn what to avoid in certain situations and given certain other.

Factors. So like, if I was more tired, I would avoid certain things, but if I had gotten a good night's rest and I could take more of a risk or whatever, and so that it really, the prognosis relies on us. It really does. I've had to learn how to listen to my body in a completely different way.

With FND, it's less about fixing things and more about managing them moment by moment, and I literally mean. Moment by moment. And I know that it's so much easier said than done, which is why I wanna say it now. 'cause I wish someone had said it to me. And I know that there's so many more people now just looking for somebody, something to relate to.

And I just want to say that it's possible you will get there and don't be so hard on yourself or your body that you feel like I'll never get better. I'll never make progress. Slowly, you'll make progress. You will make progress within your symptoms. You'll make progress and document certain things, but don't document every moment of it.

If you document every moment of it, then you're just living in the FND. But if you document certain things or you just make sure to document, you know, okay, hey, I'm having a rough day in this moment and this is how I'm having a rough day. Then 300 days from then, six months from then you can look back and be like, dang.

I was doing really bad. I could barely walk every other day and now it's, it only happens every seven days or something like that. It really makes it feel good to be able to reference back and see the progress that you've made. I know FND doesn't play fair, so does anyone else feel like FND doesn't play fair?

It doesn't. What is fair? So tell me what's something maybe that you thought you figured out only for it to turn around and surprise you later? That's. That's a thing. If I can think about something I thought I had figured out only for it to surprise me later, it would be

it would be the vocal ticks. It would definitely be the vocals, vocal ticks, because that's something that started real light for me in the beginning. It wasn't like one of my first symptoms at all. However. Randomly, it just started and my first vocal tick was like a and like, okay. It was just like, what?

What? So like my family members were like, did you do that on purpose or was that the FND? Or whatever. And so, yeah. So I thought I had figured out, okay, cool, that's gonna be my vocal tick when I'm having some of these tremors and things in my legs, spasms in my legs, myoclonus, whatever you wanna call it, then the hum would start to come out sometimes.

But then. That didn't become the only one. And so I was worried that it was gonna get to whole phrases and things like that. And so like sometimes, so then it switched and there was like a laughing one and then it switched and there's like a, almost like a screaming one and then one that like shrieks, but like from internally.

So that's the one that's like every time I think I have it figured out, it like transmutes into a different kind of symptom and or a different kind of tick. And so like I just can't help but roll my eyes about it because I'm continuing to try to, adapt to it, continuing to try to adapt to it. But when it keeps changing, even in me being better and being able to do more things and go more places and experience more things, sometimes those little vocals seep out and I'm like, well, where did that come from?

That will literally be my response. It's like, dang, I don't know where that came from, but I just pay attention. I pay attention to what I had done, how tired I was, how much I had eaten for the day, anything like that to kind of see. What the trajectory of it or what the reason is for that thing to arise for that thing to come out.

And that's all that we can do. The thing about it is we can just track what we have going on because no one else is gonna do it for us. And then when we do go to the doctor, they're gonna ask us a whole bunch of questions because they're relying on us because of the fact that there is no clear prognosis for this.

So they wanna know what does it look like in your life? How has it been going in your life? And while that may be frustrating, that might be really annoying because it's like, well, aren't you supposed to be the expert? Aren't you supposed to be the one that's helping me? But like I said in the very beginning with this, it's not really about the professionals.

It's not really about the doctors. It's not really about what we would hope they would be able to do for us. It's really about what we can do for ourselves. I guess like my last point, I'm only been in here for about like 15 more minutes, is just that the possibility of remission in FND is possible.

I believe it's possible. Would I say that I'm at a point of full remission? I'm pretty dang close. I am pretty dang close right now. When I think about. How things have progressed and where things were. The pain that I was in constantly, I don't feel it as much. I'm not on any medication, by the way.

None. I'm not a person that takes medication. I'm not a person that just keeps trying to get the next prescription because every time I see a ad for some type of prescription, they tell me all the ways that it could possibly kill me. So I'd rather just like risk my own death without the addition to medication.

But the pain that I used to be in is not there. My diet, my appetite, I mean, is a lot better. The vocal ticks don't just happen as much as they did. Neither do, neither does the spasms and the seizure-like activity. So am I in full remission? Pretty dang close. The only time that I have some sort of symptoms arise has to surround has to do with intimacy.

We're gonna have a whole different, I'm gonna have a whole different, one, whole different episode, a whole different live when it comes to that, to talk about that. So there is hope. There is hope. I've heard stories of people who had long stretches where the symptoms disappeared or became much more manageable, and I never thought that I was gonna get to that point.

And I did. So you can too, because it's not just for me, it's for everyone. It's truly for everyone. That's why I am choosing to take my time and just try to. Talk to people and share my story because I know that it's a lonely road. It can be a truly lonely road, but it's possible. It just depends on how much you wanna put into your own wellness.

Not how much do you think that you can go to the doctors and they can tell you what's going on or what to do or not to do. They don't, they have like 15, 20 minutes with you and that's like it. And then they will keep saying, Hey, I'll see you in six months. I'll see you in three weeks. Or follow up with your so and so.

It really is about how much do you want to put into your wellness, and it's a job. It is a full job. So I am grateful for the positioning, my life's positioning that allowed me to have the time to get better and to learn myself and to. Become this version of myself because it does take being very super intentional.

Yay. But it's worth it. It's truly worth it, and then no one can take it from you. I don't believe anyone would be able to take the growth that I have seen and made. They can't take it from me, so it's possible. I don't think that any neurologist or neuropsychologist or neuro physical therapist, neuro ophthalmologist, whatever you want to call it, I don't think that they can really tell you that it's possible because they haven't lived through it.

They can just show you like, yeah, I did have a patient who, she came in and she was in a wheelchair and she couldn't walk, and now she can so see it is possible, but I think it might mean more coming from a person who has lived through it, coming from a person who has. Like literally just crawled from out the mud, crawled from the bottom when like being in bed all day long and not thinking I would ever work again, not thinking I could ever even, I couldn't even sit for like three minutes, five minutes.

I couldn't sit. And I've been sitting 51 minutes now. I've been sitting and planning and doing different things, and so that lets me know how possible it is. That lets me know that. What I have been doing is working because what people what the practitioners were trying to offer me to do or to offer to do for me that wasn't working for me, that was not gonna work for me.

And it just was like, I don't know, balls in your court. So a lot of people will take that ball and they will see it and feel it as a burden, and that's what's gonna make your prognosis worse. If you take that ball that they say, Hey, ball's in your court, and you just carry it and you can barely carry it, and you're like, I wanna set this ball down.

Can anyone help me with this ball? I don't know what to do with this ball. For me, ball's in my court means it's up to you. You can change your life, you can change your reality, you can create your reality. And that's exactly what I did. That's exactly what I decided to do. I made a decision one day as I cried, walking out of a neurologist office with my daughter right next to me.

I will never feel like this again. I was like, I will never allow a person who's supposed to be getting paid to heal me or make me feel good. I'll never feel like this again. So the hope is what keeps me going. Even on the hardest days the fact that I know that more is out there for me is what keeps me going on the hardest days.

And so. I am just trying to share that and I'll be back here live giving actual advice and tips and methods for what I did. It's been five years for what I did over the last five years to really change my life and change the course of what was trying to happen to me. I decided, no, I'm going to claim back my body.

I'm gonna claim back what is happening to me and. I did. And so even if remission feels so far away, even if you just got diagnosed yesterday, last week, last month, and all this is new to you and all this feels like the end of the world, every small win matters, pat yourself on the back. That's the biggest thing I can say today.

Pat yourself on the back for making it through a day. When you wake up tomorrow, say thank you to your body. Thank you. Even if it hurts. Even if it was seizing and tremoring and all these other say, thank you for allowing me to get to the next day body. Thank you. Thank you for housing me all these years.

If you're 18 38, 48, 20, thank you for dealing with all that I've had to deal with in the last 20 years. Hey, gratitude will change your life. So start there. Every small win matters. Tell the people around you even. That every small win matters, and if they hear you, they'll start to help you celebrate your small wins.

Like, Hey, you walked from the room to the bathroom today. Let's celebrate that. That's something to celebrate. Being able to get back to driving, that's something to celebrate. But you have to try it. You have to be willing to try it. Don't do it in an unsafe way. Don't do these things in an unsafe way, but every small win matters.

So maybe it's getting through a day without a major symptom flare. Cool, that's great. It doesn't mean you have to do everything all at once. That's what's not going to work, is trying to do everything all at once. But slowly but surely, as you get little win after little win, then you can have a little bit bigger wins.

After a little bit bigger wins, then back to a little win. Because life is gonna be like, wait a minute, your body's gonna be like, hold on a second, you're doing too much. But little win, small win, little bit bigger win, medium win. And then slowly it'll be like, dang, I think I can plan out a large win. I think I can anticipate a larger win.

And you'll be able to do it. And so if you have to. Seek out techniques, seek out things that are going to help you rewire your brain. Rewiring your brain is the thing that your body needs right now. It is confused. It is misfiring, it is upset, it is yelling at you. It just wants some attention. And so doing those things.

Is going to be the small wins that you need. It's going to get you slowly where you're trying to go. I want you to think about something that gives you hope. When you're dealing with that findy, what little thing can you think about and keep in your back pocket as like, this makes me happy even when everything is bad, this makes me happy, this makes me hopeful.

Maybe it's not a doctor. Maybe it's a loved one. Maybe it's a family member. Maybe it's. Remembering how your life used to be. We'll get into that at another point, but if that's where it is for now, that's fine. That's fine to focus on that. Maybe it's a good day. Maybe it's a good day you had and you're like, wow, I wanna have more good days like that.

I haven't had good days like that in a long time. Then hold onto that.

Maybe it's just the stories of other people. Maybe you're like, Hey. I am motivated by seeing so-and-so's life and I'm gonna hold on to that hope. Hold on to hope. You have to find something to hope for, which is funny because happy FND Awareness Day by FND Hope. Why do you think they named themselves FND?

Hope, this whole disorder, this whole thing we're dealing with, it really hinges on the amount of hope that you allow yourself to have and the amount of hope that you can find when there's nothing else left. So when it comes to FND, the word prognosis doesn't mean much. It's not about what's likely to happen because honestly, who knows?

Nobody knows. It's about learning to live with the unpredictability. It's about finding what works for you and holding onto the hope that things can and will. If you will it, they will get better. If they can, and they will. And that's an affirmation that you can say things can and will get better for me, things can and will get better for me.

Start there. That'll be a small win. Say, I'm gonna say this for the next 30 days. I'm gonna say this for the next 14 days. I can and will get better. And if you just start there I can almost guarantee you that positive changes will start to happen. So. I'd love to hear your thoughts on what you have hope about.

I'd love to hear the thoughts on what you plan to do. What do you, what's your latest small win? How do you manage the up and ups and downs of FND? What things have you found that have helped, or are you still figuring it out? Which is perfectly okay because I would say I'm still figuring it out. But share your stories and tips because the more we talk about this, the more that we can support each other, the more that we can support each other, the more that science researchers, practitioners know that're kind of a big deal and we are kind of important and we kind of want our lives back.

And then other people that come after us will. Have a little bit, have it a little bit easier. I feel that's what we're here to do is kind of pave the way so, and pay it forward. And I always wanna end and remind you that when things are going crazy, when symptoms are arising, when you don't kind of know what to do, when you don't know how to, when calm yourself down or kind of just get it together, find something with your five senses.

Find something you can see. Find something you can smell, taste, touch, and hear, and to bring yourself back inside yourself. We get so far out here that we get all over the place and with FND I think that is one of the worst things we can do. So bring yourself back in here. Let me know if that works for you and we'll chat soon.

Super fun. Bye.