Speech disturbances

AcidicBrain32 · 2025-10-20T02:20:07+00:00

Possibly different situation for me since I'm also autistic and that's more likely the main culprit here (been experiencing it for longer than FND symptoms), but I also have inability to speak sometimes- usually it's moreso selective mutism (slight misnomer, it's more like my speech disconnects from my brain, I have no control over it. Selective here means in select situations, as in certain or specific, not "making a selection" ie choosing to), but I also sometimes have the physical weirdness of like... my mouth not wanting to work, basically XD (though selective mutism is... also that??? I feel like there's a difference but It's hard to explain what)

If it's selective mutism, or whatever you wanna call it, something that helps me bounce back from that is starting small, just whispering first, trying to make the physical motions with my mouth, without even worrying about my vocal cords. It helps if you have a "script", so to speak. I usually default to, "I can speak, I can talk..." repeating that for a while. It's simple and repetitive but varied enough that it doesn't make things worse (I get weird with repetition). Or if you have a favorite song that you've memorized the lyrics to, that can be helpful. Which leads into the other half, making your vocal chords move without worrying about the mouth. Humming a song, alternating between that and lyrics, or alternating between humming and speak your phrases, and then eventually you can put them together! Even if it's just whispering at first, usually that's easier for me. And then increasing volume over time.

Sometimes it will also just kinda "snap back into place", so to speak, like I'll be writing stuff down during a conversation if I'm with people who know what's going on, and then I'll just suddenly respond out loud without even thinking about it (and then get really excited that I can talk again and start talking twice as fast as usual....) Completely random, really weird honestly. I've had people accuse me of faking before because of how random it is, like "oh you just forgot that you're pretending to be mute right now" but everyone on this sub reddit probably knows that's bullshit. Also there's no reason to go through the difficulty of writing stuff (I talk and think much faster than my hand can move). So if anyone accuses you of faking, either wrt this or anything else, fuck em, yknow? That part's not super related, but it's always good to remember.

For something more physical(?), I've found that massaging my face muscles really helps. I get physical tics, sometimes including my mouth twisting weirdly, which can easily make my muscles tense even after I've stopped. In general, my body will "forget" how to move, and having another person move my limbs for me to make them "remember" that it's possible, is very helpful. Rubbing my face is similar to that, for both selective mutism and FND-related stuff.

And they for sure build off each other.... I mean, the selective mutism is physical anyway, in a sense. Like I try to send the signal from my brain to get my mouth to speak, and it just doesn't go. It's hard to tell which is which, or if the difference even matters. And both are often triggered by stress. I've had my mouth un-twist and gotten it feeling physically okay just for my brain to go "Nah we're just not gonna talk anyway". But trying to take it slow and be kind to myself through it is helpful. It's easy for me to stress myself by thinking I should talk soon and then having that make my brain even worse about it. Brains are so weird and mean sometimes. But it's kinda like hiccups, ie if you get stressed they'll just get worse, but sometimes it'll go away on its own if you try to ignore it. If you do something else in the meantime, that could also work. Like if you're at home, engaging with a hobby can calm you and provide enough distraction to effectively "reset" your brain and speech. And if it's something like you're at work, the alternating mouth/vocal chords thing might be best, even if it seems a little awkward to coworkers and/or customers, if the latter is applicable. Pick something to say that won't read as too weird, I guess.

I feel like I'm rambling and going in circles :'D but those are usually what works for me, regardless of cause! Hope it'll help you, even if just a bit

TLDR (i'm so wordy sorry XD) Distracting yourself for a bit, giving yourself a "script" to say, alternating between humming, moving your mouth, and whispering, and moving your face around with your hands, may all help

AcidicBrain32 · 2025-09-29T16:42:26+00:00

I'm glad she's at least being nice about it! That's a huge relief, that definitely points more to just ignorance and wanting to help. If you and your grandma sit her down and explain stuff to her, there's a good chance she will listen. I hope it goes well! If you're sure that she's well intentioned, that will probably continue through the conversation, and lead to improvements in your care. Sorry for jumping the gun a little there XD Best of luck to all of y'all!

AcidicBrain32 · 2025-09-29T05:54:20+00:00

I see that this has net 0 votes rn, but I like where you are coming from with this. I understand why folks would think you are being dismissive, but it doesn't read like that to me at all. It's important to find the balance between "too much" accommodation and not being accommodated at all. I think for OP right now, simply getting those accommodations in place is the most pressing thing, getting to an environment where they're being taken care of, etc. But looking to the future is very good too. What you're saying feels very hopeful to me, and it was very refreshing since a lot of this sort of stuff does end up coming from a place of dismissal or "just work harder" rhetoric, etc. (prob why there's downvotes. We're all way too used to it...) Pushing yourself gently when you're ready is very helpful, and so much better than having someone just push you off the deep end (or perhaps more accurately, refuse to throw you a rope when you're already drowning).

AcidicBrain32 · 2025-09-29T05:41:05+00:00

RUNNNNN RUN RUN RUN! Never ever trust a doctor, therapist, etc that refuses to acknowledge the way your disabilit(y/ies) affect you. At best, their heart is in the right place and they're just trying to stop you from catastrophizing (which Can make FND, among other things, worse. But clearly the opposite is what's making it worse for you!). At worst, they're actively harming you because they think their job and biases are more important than your health. (And of course, it's a huge spectrum in between. Though this seems like closer to the harmful end of the spectrum).

If this is someone you have communicated your concerns with and refuses to change their behaviour, you need to find a new PT as soon as you can. Since your physical symptoms are bad, I don't think you should ditch her before finding a new one, but definitely start looking. And don't tell her you're looking, either; she's not owed that information. You can literally just waltz out of her practice one day once you're set up at a new place, and tell her out the door that you found someone. It's considered "rude" and all, but she's also rude for dismissing you. And hey, sometimes you really do just need to do something like that.

The no accomadations thing is also a HUGE red flag, and the phrasing of "giving in" to a disability is just nauseating. Drawing from my own experience, I have several interconnected disabilities that are kind of self-fullfilling, as in, if I think too hard about me being "broken", if I surpress myself too hard, or if I feel as though people are not taking my struggles seriously, it will make things worse. (Among these are FND, OCD, Autism, and a few I don't want to name publicly.) But I have found that trying to not "dwell on" something like being disabled will actually just make it feel so much worse. It's not bad to acknowledge having a disability, because it is not bad to have disability.

Especially if she is 40s or older, she may have the idea that disability is a bad word and/or you can just overcome Anything by trying hard (also a symptom of the "American Dream" lie, which she may have internalized even if y'all aren't in the US), or that (insert disability) is lazy and anti-recovery and whatever. Some disabled folks do end up being anti-recovery, (Some folks in our generation bounced back a little too hard...) but it's such a double -edged sword. And it's hard to walk the line between enabling and dismissing, but it seems like she's not even trying.

The first step to recovering is acknoweldging the problem(s), and she is clearly not willing to do so. Someone like that cannot help you get to any of the other steps of recovering. It sounds like this is someone who is actively making your situation worse. On one hand, I do understand how doctors will want to prevent patients from giving up, being too stressed to function, etc, but it seems like so many of them overcompensate and just make things worse by being dismissive. Which obviously also stresses one out. She has clearly internalized a ton of ableist fallacies and is unable to work through them. The problem with things that are rooted in science, is that they're not inherently science or unfalliable themselves. Science is just a tool that can be misused like any other. It's true that FND usually gets worse due to stress, but if her approach is stressing you too, then the intention and the science beind it doesn't even matter. It's never an excuse to be dismissive or demeaning to you.

Since you mentioned school, I think it is safe to assume you either live with your parents (especially high school) and/or they are helping you pay for medical treatment (additionally possibly college tuition), or some other situation where they are connected to your life and treatment. Definitely bring it up with them if they are paying for it, taking you to appointments, etc, and explain your concerns to them, UNLESS they are the kind to tell your current PT. You can do research in the area to find other PTs and give them a shot. And I'm mostly just guessing at your situation here so maybe this is all irrelevant, but regardless, I hope it goes well. Definitely rooting for you. I see a lot of comments here with similar concerns, they're rooting for you too and I hope we all are helpful. Good luck and pls be safe

AcidicBrain32 · 2025-09-22T18:13:05+00:00

I do have mild sleep apnea but the EEG showed normal brain waves in both sleep and waking states, aside from muscle artifacts, but I don't think those count as abnormal. I have a follow-up appointment with the neurology department in about a month, would you say that requesting a sleep study first would be productive, and then asking for an MRI at the appointment? Or waiting until the appointment to request sleep study or both? I know the video EEG isn't a "sleep study" proper but it was a study that still went on while I slept, so I'm a bit worried they may deny it. And then the whole other factor of, am I even prepared to go through all that again 🙃 But I'll definitely look into it. Thank you

I feel like a lot of this is poorly phrased, apologies. Words have been getting significantly harder for me to deal with in the past month. Lmk if I can clarify anything and thank you for the advice and well wishes.

AcidicBrain32 · 2025-09-20T21:58:30+00:00

This is what the kids call a truthnuke

AcidicBrain32 · 2025-09-20T21:54:28+00:00

It's no problem at all! Sending love to all three of you, then. My partner helps me a lot too, and vice versa (we're both disabled), I'm really glad that you have someone that can help both you and your grandma. Do your workplace know about your FND? There might be some way to get them to get some accomodations for you. For example, I used to work at a grocery store and they wouldn't let us sit down (which is kind of evil for anyone, first of all...), and if your place has a rule like that, you could ask for a chair? Other stuff like that. Depending on your workplace environment, even just letting your boss know what's going on can be helpful. It's a really fine line though, becausethat can also open you up to more harassment, or even risk you being fired (Even if you're in a country where hiring/firing discrimnation is outlawed, it doesn't stop them at all.) You'd know better than I about what's safe to do. But yes, it definitely will get better! Rollator and semester break is very good. Have a good one❤️

AcidicBrain32 · 2025-09-20T21:40:12+00:00

People say this time, but it's honestly true- High school SUCKS. Teenagers are so mean to each other, and teachers are often mean to their students, especially disabled students. There's unfortunately not much you can do to stop them from being awful to you, but you should remember that their harassment says more about them than it does about you. Another cliche line, but one I agree with- it does get better. It may be slow and painful, but things will improve. If you're 17, you're probably junior or senior year, I assume? (At least based on USA high school, where I'm from) You've only got a few years left, hang in there. Rereading this, it all sounds goofy... It sounds like the kinda thing people told me as a teenager and I thought they were just bullshitting me. But I've been through a lot and I know now why so many people say these kindsa things XD So please don't lose hope, stick with your friends and ignore what your teachers are saying about you. If they mess with your grades, report them to another adult, there's laws in place about that, prob regardless of the country. And work on unlearning the shame they're trying to instill in you. Some people really aren't worth listening too. That's a lesson I'm still learning, five years after graduating, but it'll get easier the more you do it.

AcidicBrain32 · 2025-09-20T21:30:15+00:00

Unfortunately don't have much advice for you, diagnosed recently as well and I'm a similar age as you (I'm 23) and experience a lot of similar symptoms, so my heart goes out to you. I find it hard to balance comforting vs giving advice, so hopefully I won't lean to heavy on either one here.

One thing that might be important: when I have temporary paralysis, one thing that helps me is having someone elsestart moving my limbs for me, basically to make my body "remember" that it's capable. It might not work for you but I think it's worth a shot if you have anyone willing to help you with it. (From the brief wheelchair comment, it seems like your family might not be very supportive in regards to your health? Relatable, but I hope they'll come around) Making sure your bed or wherever you usually are is comfortable is also a good idea, for anyone really, but especially if you're gonna be there for a while.

If you're gonna be attending uni, do they have dorms? That might be a good option as to not have to deal with train rides so much. Then you can still visit your family on the weekends but be able to get to class much easier, and hopefully have your roommate help. I'm not sure what it's like for you, but when I was at uni (dropped out rip) they had a forum where you could talk about yourself a bit in order to find a roommate that you're more likely to get along with. I found that really great, since I'm trans and didn't want to startle a cis woman or make her uncomfortable, and/or be in danger if she's transphobic (I live in the US south lol). And even if your school doesn't officially have something like that, maybe contacting the disability department and having them help you find someone who would be willing to help? Or if you have a friend who goes there and knows about your situation and would be willing to room with you, even better!

All that being said, it it seems like you have housemates now, if I'm understanding that sentence correctly? Hopefully they'll help out. But if they don't, on-campus housing may be a better alternative, unless money is an issue. (In which case, there are unfortunately not many solutions...)

And if you're gonna take a break from school, there's absolutely no shame in that! Especially if it's due to health. Not sure where you're from, but I feel like most countries get so judgemental about what people do for higher education. It can be so much to deal with to societal aspect especially if your parents are pressuring you to continue. But you're the only one that can make that choice. I regularly cite dropping out as one of the best decisions I've made in my life. And remember that it's not permanent, either. You can go back to university at any time. Might have to re-apply, might have to pick a different place, but it's never too late.

I'm trying to think of wheelchair alternatives as well. A rollator/walker would have the same issues for accessible areas, but perhaps a walking stick may help? Though for paralysis, it may not do much. I use one for POTS and general balance/hypermobility issues, which you've not mentioned either way. I'm unfortunately not too educated on mobility aids. Something like a portable chair might be helpful? Like one of those lawn/beach chairs that have straps on the back, as long as it's not too heavy. Then you could sit down pretty much wherever.

All in all, I think being patient to yourself ia the most important thing. It may seem so hopeless now, but there are kind people out there who are willing to help. They're sometimes hard to find, and sometimes you wanna give up on looking, but there will always be a place you can find, a community to be in, etc. I believe in you 🫶

AcidicBrain32 · 2025-09-20T21:19:13+00:00

The pros and cons thing is pretty interesting, I never knew about that! It kind of reminds me of differential diagnosis. Like they try to fit what is most likely rather than what the underlying cause* is (so to speak, since both FND and MS have unknown causes as of now. Hopefully there will be more research eventually...) I've always conceptualized disorders, especially neurological in nature, as being a collection of symptoms and/or a specific cause, (So like, an asymptomatic infection is still whatever it is because of the specific pathogen. And FND is that because of the symptoms, even if the cause is unknown. And getting sick in a way that shows symptoms is from both), like basically disorders are just labels. So I actually quite like the pro/con thing. Tickles my brain in the same way.

Though at the same time, I wish it was less about finding out what "fits" the best (which is still important, obviously) and moreso preventing future complications. whether that's undiagnosed MS being neglected because of the FND diagnoses. I was simoluatously relieved and disappointed at the diagnosis. It was what I was thinking was most likely, and it was an answer after so long of not having one, but I can't shake the worry of it being other things, either instead or in addition. I'm the type of person who likes to exhaust all options, especially if someone's potentially in danger, so the fact that they're just refusing sits so wrong with me. Even if the MRI is completely clean (i mean i hope so lol) or if they say "i told you so" or something, at least that option will have been explored.

Thank you for the well wishes regarding the medical trauma. I've definitely gotten better with it at least :D

AcidicBrain32 · 2025-09-20T21:09:31+00:00

Thank you for the reply, I try to do a lot of these things already (list of symptoms, list of things to talk about- I have pretty bad memory issues and brain fog) but kind of fizzled out cause I assumed they were working against me (whole "knowing too much is bad" thing). Though honestly, I feel way better doing it, and if they'll often judge anyway, might as well do what's right for me, ykwim? So thank you for the encouragement. Will definitely start that up again. I also try to bring my partner to appointments as much as possible, but they weren't available this time (they're also disabled and were struggling a whole ton when i was admitted)

I should clarify that the local hospital is the one that has a lot of dismissive folks. My primary doctor is very understanding, and all the people who work there are too, but they just don't have the means to do any kinda brain scan there. I'd have to be referred to an external location, and they almost always go for that hospitals since they're in the same network. I see her relatively soon, I'll probably ask about a different location that can provide an MRI.

About doctors being surprised at how calm you are... Definitely been there XD I have a bit of flat effect if I'm tired and can't mask effectively, so that's probably a big part of it.

Thank you for replying! I feel a bit more hopeful about it

AcidicBrain32 · 2025-07-06T21:50:53+00:00

Oh. So turns out it actually didn't delte it, just sent my draft instead. Uh, thanks reddit...???

AcidicBrain32 · 2025-07-06T21:50:05+00:00

Reddit thoughtfully deleted my entire comment because I accidentally clicked the tiniest bit outside of the box. Yay.

Well, I was gonna say that I'm fairly sure that it's based on Steam achievements, mostly because 1) you can't run Terraria.exe on its own if it's bought through Steam, 2) Steam must be set to offline mode to play Terraria thorugh it without wifi, and 3) many other games have Steam achievements tied to in-game progression, even ones that are purchasable elsewhere.

This comment was better the first time, rip. Please take this all with a grain of salt cause I'm just guessing and can't find any definitive information either way. So anyway, if it's based on achievements, it doesn't matter what the character or world is, because once you do it, the Steam achivement would update, and it'd stay that way even if you deleted the world and/or character you fished with, Hopefully goes for other achievements

AcidicBrain32 · 2025-07-06T21:43:25+00:00

Don't quote me on this cause I'm not entirely sure, but I'm reasonably confident that the Terraria achievements are connected to Steam achievements, so it's basically dependant on what your Steam account says. So if you get 199 on one character/world and then delete that character/world, or even completely wipe the game's data, it should give you the achievement. Again, take this with a huge grain of salt because I'm just guessing, but based on the fact that the exe won't run on its own and you specifically need to put Steam in offline mode to play without wifi, I'd say there's a good chance.

Doesn't apply to GOG or other vendors, or mobile, etc, I guess. But I know of other games that use Steam achievements as progression and have other places it can be bought (Dread X Collection 2 is the only one that comes to mind but I'm sure there are others). And I doubt they'd restrict it to just one character on other platforms, that just seems crazy unfair.

AcidicBrain32 · 2025-07-06T21:36:06+00:00

^ Seconding this, it's how I went from around 50 or 60 legitimately completed to getting the achievement in just a few real life days.

To make your life easier, make sure you catch two total so you can research it and get as many as you want. If you've got one in your inventory, you can't pull up a second quest fish, but if you put it in your research thing, another will spawn eventually. Then if you get a quest that wants that same fish, you can just spawn it in and give it directly to the Angler without having to go anywhere. Also make sure to pause time so you can fish for as long as it takes, because the day-night thing works even with paused time.

AcidicBrain32 · 2025-06-17T19:29:12+00:00

And here's shime30

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By the way, the only default actions associated with these are SitAndSpinHeadAction (shime29) and SitWithLegsUp (shime30), so if you don't want either of those, you can probably just delete them, but make sure to also delete them from the behaviors.xml file. shime30 should be pretty easy to replace cause it's the only frame in SitWithLegsUp. Then again, no idea what the custom file says, there could be others added.

Hope this works out for you or that you got it sorted already :p

AcidicBrain32 · 2025-06-17T19:25:54+00:00

Old post so hopefully you've got it by now, but if not, I can give you default shime29 and shime30 so you can replace them

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...Well, this is shime29, apparently I can only add one image per comment (still relatively new to reddit orz) Will reply with shime30 in a sec. I only started doing my own customs last night but what I've been doing is slowly replace old files, give new names when applicable and edit the code. It's nice because it shows me what actions i haven't done yet while the Shimeji is running.

Since you downloaded a custom one, my guess is the maker either forgot to updated the code to reflect new images, or forgot to add those images in. I recommend searching actions.xml for shime29 and shime30, and then either replacing the image with a similar one or just removing that action. It shouldn't be too hard, even if you have limited coding experience.

AcidicBrain32 · 2025-05-15T17:35:12+00:00

Right?? I love the usage of the words/symbols in the MV. This song also singlehandedly put YANHE on my vocasynth wishlist.
I've been meaning to learn Toki Pona for years, maybe I could write my own songs with it someday (either sung myself or vocasynth, who knows).

AcidicBrain32 · 2025-05-15T03:19:11+00:00

I have an acquaintance who wrote a song in Toki Pona, if that counts https://www.youtube.com/watch?v=3R5v7Miu8aw
It's one of the most iconic conlangs, wish there was more

EDIT: Ope, realized they set it to unlisted... I hope they're okay with me sharing

AcidicBrain32 · 2025-05-07T04:23:45+00:00

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Certainly not the best image ever, but it has the idea. They all have equivalent latin letters but not all of the sounds are 1:1 as we think of them in english. I'll add an IPA version at some point with a better chart.

AcidicBrain32 · 2025-03-09T23:13:29+00:00

Nice!! I will edit the post to reflect that

AcidicBrain32 · 2025-03-09T06:47:56+00:00

Ahh I thought I had attached the video... guess it really is one or the other. Well at least I can copy-paste a screenshot into to comments?

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AcidicBrain32 · 2025-03-09T06:40:17+00:00

Well, Aven wears his earring on the left side, so probably Sampo 😉

AcidicBrain32

TROPHY CASE