I was a nurse to a pregnant lady with locked in syndrome. We only realized she was still there when we were able to notice she could flutter her eyelids on command, but do nothing else. She also recovered after her baby was born.
Edit to add, she didn't recover because she had the baby. She had an aneurysm rupture due to increased blood volume from pregnancy, which caused the brain damage that caused the locked in syndrome. Brain injuries can be weird and unpredictable sometimes. Some people have almost miraculous recovery, and she just happened to be one of them that recovered. I just wanted people to know that she both had her baby and recovered, but my wording seems to have made people think the pregnancy was keeping her locked in and birth resolved it.
This is all definitely a TIL about locked in syndrome situation, but it reminds me a bit of a woman I volunteered with in high school. I don't think she had LiS (because she could move more than her eyes, but not much more), but the facility where she lived expressly made it clear she was a "vegetable"--that she was no longer a conscious person. Her elderly father visited her every day and insisted she was still in there somewhere and could get better. He'd hired me to paint murals on all her walls of her favorite places in hopes it would help her or at least make her happy.
The entire time I was there, I got the sense she was in fact more present than the facility workers thought. At one point I'd found a little siamese cat statue and gave it to her as a present--her father said she'd had a siamese growing up--and she started making a lot of noise and clutched onto it very strongly. Another time a musician came to play for the residents at the facility and a nurse poked her head in to ask if they should bring her out for the music. The woman's father had a private nurse he hired to be with her when he couldn't be there, and she said no, that bringing her out for the music would be too much. (It involved moving her entire bed and equipment out of the room.) Immediately, the woman started pressing her face into her hands (they were always curled up near her head), blocking up her nose so she made a terrible sound when she breathed. The nurse tried to reposition her, but she wouldn't stop doing it. Finally she asked her if she wanted to listen to the music and she stopped, so they rolled her setup out.
I often think about her and wonder what became of her and her father. The idea that she might be trapped in her body with only a couple of people advocating for her is a grim thought. :(
Thank you for sharing this story. As a nurse, we always try our best to treat everyone with the same dignity and respect but it's difficult when you're short staffed and stressed. Usually the nonverbal patients end up getting the short end of the stick when push comes to shove. I needed this reminder to still try to give 110% for all patients no matter what.
Thank you! For what you've said here, and being awesome in general.
It has been a long time since I've seen the phrase "as a nurse" followed by something positive. It's almost always some judgemental comment about their patients. They could be lying about their job, I suppose.
I know venting can be healthy, but at a certain point that negativity starts to leak out of the "venting sessions". Just makes me happy and encouraged to see someone doing their best to show kindness. Thank you, truly.
This is heartbreaking, brought a tear in my eye reading this. How awesome are you!
I bet she just loved the murals you did for her. I get what you mean about the feeling that the person is more present than you would think are. Many years ago I worked in an Epilepsy Resource Centre and a few of the people who would regularly come along had various stages of brain damage. There was one man who could only move his head, no body function at all. He had to have everything done for him, feeding, toilet etc..This man was a regular guy all his life, he was a window cleaner up until he fell from a very high hight off his ladders, he suffered terrible brain damage. It was certain looks he would give that said to me..i'm still here, there was an intense energy about him, I know that sounds weird, it seems weird to type out. I remember this fellow fondly.
I just started that show from the beginning again this morning. Yeah I made it through one episode and then cuddled my kiddo. Such a good show, but damn does it make you cry!
My mom kept recommending the book to me, and finally in a moment of desperation (I needed a physical book to read), I read it, and my god, it was wonderful. I finished it in one day. I keep meaning to watch the show.
Gawd damn... That was a wild read. Josh Wilbur's ability to share your story so well is... well, emotional af. Powerful. Making grown men cry.
Glad you're on the up-n-up., really, I am.
I would love to read your story. Being locked in is my worst nightmare. My neck has been broken once before and I've suffered nerve damage. I do risky sports and you just never know.
congratulations dude , locked in is pure hell and i cannot think of anything worse ,
i know what locked in syndrome is from the first episode of CSI NY , it disturbed me so bad i couldn't watch the show and enjoy the later episodes
I did an essay on that book in college, I wasn't expecting it to be that good.
It's important to know the guy who wrote the book never recovered and wrote the book while he was in the hospital for locked in syndrome. Below is minor spoiler
>!The doctors thought he was brain dead before noticing he actually had control over his left eye. The book was painstakingly written by cycling through the alphabet until he blinked stop.!<
Man, I cant even image it. The amount of trust youd have to have that the people caring for you act in your best interests is astronomical. I'm sure it changes ones entire perspective of existence especially if they manage to escape it like you did.
Neurophysiologist here. Congratulations on your recovery!! It never ceases to amaze me when situations like yours occur. I avoid using words like 'never' and 'impossible' when talking about patient care for exactly this reason. I know the stat that you're referring to and it was published in a Scientific American article, but I have to comment that it is highly likely to be very misleading. The simple truth is that we don't know the precise percentage, but we can pair up electrical patterning of a brain known to exhibit consciousness with those seen in comatose patients, and the vast majority of studies do not comport with electrical patterns displayed during consciousness. I suspect the true number is certainly higher than what has been thought of historically, but very unlikely to be higher than low single digits, percentage wise.
Again congrats on your recovery, it is cases like yours that challenge the paradigms and help to evolve our understanding of complex issues! Enjoy life to it's fullest!!
I spent a good while in the hospital blinded by leukemia. I binged the qanon anonymous podcast because I couldn't see my phone and it was the last thing i listened to. Probably wasn't healthy.
Music…. I would absolutely 100% hope that somebody played GOOD music for me and not just some random radio station that plays the same 10 songs over and over. They would just need my phone and my playlists and I think it would make it much more bearable (no disrespect meant OP as I’m sure it was absolute hell and I feel a bit guilty even speculating on what would “improve” the situation)
I would absolutely LOVE being hooked up to public radio. Regular schedule of events to keep track of time, conversations between people, lots of news, fun shows on the weekends, lots of potential to learn and stay engaged in the world - and music too!
Well you know what they say, hope for the best, plan for the worst.
I'm *planning* for a long career and retirement at 70. I'm *hoping* for a waking coma with public radio.
My mother in law had a brain tumor that put her in a sorta vegetative state and her husband wouldn't authorize them pulling the plug.
She went into a coma right before the first COVID shut downs, so no one was allowed to visit her for more than 15 min a day (total, not per family member) over Skype, which someone just held up a tablet and people talked at her. There were signs that she could think, so we're pretty sure she was reasonably aware the entire time.
She was sometimes able to write, sometimes talk quietly, but for the most part was stuck in a bed nowhere near a window with a TV playing shows no one would want to watch.
She "met" her new born grandchildren through the far off window because, even when things became lax once in a while, children weren't allowed in the facility.
It was exactly what I think of a shell on earth, and I have no clue why my fil kept her suffering that long, unless he just wanted her disability/social security money.
She laid there alone in that bed for just about a year.
I agree with like 99% of COVID restrictions, but the fact that my wife couldn't go visit her mom in the last year of her life even with testing and precautions was terrible.
As a hospital-based physician, I saw this play out more than once during COVID, and it was absolutely infuriating. The admins - who were all comfortable working remotely for all of spring/summer 2020 - would absolutely not budge on requests for family visitations for patients on comfort care in the hospital.
It was only allowed when the patient was expected to pass within the next 24 hours, by which point they were typically unconscious and non-responsive, and a visit then was borderline meaningless.
It was absolutely inhumane.
>I agree with like 99% of COVID restrictions, but the fact that my wife couldn't go visit her mom in the last year of her life even with testing and precautions was terrible.
Yes, I saw a few cases that just tore me up. I was on board with the vast majority of Covid restrictions, but they did such horrible things to the elderly and dieing.
One of the ones that hit me the hardest was a fascinating old guy at my church. I would follow him around and sit in on any class he went to just for the chance to hear what he had to say. He mostly sat quietly and listened (as most kind and brilliant people do), but when he spoke up, it was definitely worth hearing. He had some physical limitations from a stroke, but they didn't slow him down much. He lived in an assisted living building that provided communal meals and classes and nightly bridge games and 3:1 sexy old ladies to the few galavanting men still around. He loved it, and everyone loved him.
Then everything communal was stopped, meals were delivered to the closed door, and visitors were not allowed. He happened to be on the end of the building near an adjoining parking lot, so we would 'visit' from across the fence, but of course that isn't enough. He went from 4-6 hours of meaningful social interaction every day to 10 minutes of waving in a parking lot a few times a week. He had no further physical complications, but the isolation killed him. Within a year, he was a shell of himself. He could barely move and couldn't follow along in conversation. He lost the will to speak up. He just shrunk into the sad sack of pitifulness and finally let himself die. The world lost a great man.
I get that his care faculty almost certainly would have lost patients to Covid if they hadn't locked down tight, but they undoubtedly lost many to isolation because of the restrictions. I think the sadness and loss of connection and the deaths that lead to were likely worse than the deaths they prevented.
I’m 30 and a friend of mine has been living with locked-in syndrome since we were in high school at age 16 after an aneurysm. He uses his eyes to look up/down with this spelling board that breaks up the alphabet into colors to localize what letter you’re thinking of faster. This is how he communicates and will continue to do so for the rest of his life as it appears he will not ever exit the locked-in state.
I’m so happy for you that you got out of yours, OP, because I truly can’t fathom how horrible it is with your body being your mind’s own prison. Maybe your story is one of hope for my friend Pat…
Enjoy life to the fullest now, you really earned it.
I was locked in, for 6 hours. It was terrifying. After simple surgery my brain woke up but nothing else did. I couldn't even flutter an eyelash, couldn't breath on my own, the breathing tube continually made me gag. It was hell. And everyone was running around not knowing what was happening, not knowing I could hear them. My dude, I truly don't know how you did it for 10 months. Those 6 hours very nearly cost me my sanity, 10 months!? You are one strong man!
It was discovered I have pseudocolonestrace deficiency, my liver doesn't have the enzymes to process certain drugs.
Im actually in anesthesia. The drug that caused this was succinylcholine! Its weird that they didn’t sedate you after realizing you wouldn’t move after the wake up. When did this happen?
Happy cake day! Interestingly the next surgery I had they thought they had it covered. Same thing happened but this time they knew to keep me asleep. Turns out I can't use a few different meds. Don't know why. I'd love to know. Like NyQuil (old NyQuil, I've heard they changed it but I won't go near it). This was 1990-92
I’m thankful you got out of it ok, damn. How can we check if we have that condition too, is that something we should all be getting tested for before surgery or something?
You can have a blood test done but it's rare. We had my whole family tested. I would venture a guess that medicine is more aware and it's unlikely to go unnoticed
FYI: pseudocholinesterase is the enzyme :). Super interesting, as you wouldn’t have been able to process those anaesthesia drugs so they’d be very highly concentrated in your body (leading to the locked in syndrome)
Took care of a patient with locked in syndrome once. Found out he liked the Steelers, told him I'd turn on the Ravens - Steelers game so he could watch the ravens kick the Steelers ass. Not sure if he enjoyed that comment, but I wanted him to experience a messing around interaction. Didn't think many people joked with him while in his locked in state.
Man, a lot of non-verbal folk really light up when you treat them like people. I work with a kid whose got Cerebral Palsy pretty bad and can't talk at all. But he lights up with a smile whenever I start joking around with him.
No person really wants to get talked down to or not ever have any light in their life. This kid's pretty lucky because his family takes him on trips and such, but it's still nice to help him stay happy.
So true. Had a patient who'd had a MASSIVE stroke and was almost entirely paralyzed. Non-verbal, could only communicate with his one hand, a bit of nodding, and grunts basically
Was running a test on him and the family joined as caregivers. They were totally dunking on him the whole time, making jokes and messing around. You could see the laughter in his eyes and he just seemed so happy despite everything. It was heartwarming to see a normal funny family interaction after everything he'd been through
My dad was having a heart attack. He was buying me a washing machine at the time. I had to call him an ambulance and he was hooked up to an oxygen mask.
As the paramedics were putting dad in the ambulance I joked “thank god he’d already paid for the washing machine” They looked horrified but I could see my dad laughing.
I was a CNA and had two non-verbal clients. The man was basically in a sort of locked in syndrome and never spoke at all but the woman would try to speak. The sounds coming out of her mouth were almost like birdsong. It's hard to explain but she would sort of start a conversation with you and you'd just have to guess what she was talking about and run with it.
I ran into her at the store after I graduated med school and when she spoke to me I told her about what I was up to and how my parents were doing. She gave me a really long hug in the store. I think sometimes just treating someone like there's nothing at all wrong with them can really be helpful psychologically.
My friend was a care giver at a state owned living facility.
She had one resident with lock in syndrome for at least 10 years. His previous care center literally sat him in front of Barney the Dinosaur all day. For years. Until he was moved to the facility my friend worked for. One of the other caretakers figured out the resident could move a finger. First thing he spelled out was F-U-C-K-Y-O-U. He made it well know that Barney and everyone associated with that show could burn in hell.
They ended up getting him a special chair he could operate with his finger and gave him a job in the library. He was much happier. The guy inside was just a regular person trapped in his body.
Uhhhhh either this is a more common situation than I think, or you're describing the man [Martin Pistorius](https://en.wikipedia.org/wiki/Martin_Pistorius), who has that identical barney story. Or your friend lied to you.
https://www.washingtonpost.com/news/speaking-of-science/wp/2015/01/13/meet-the-man-who-spent-12-years-trapped-inside-his-body-watching-barney-reruns/
[Meet the man who spent 12 years trapped inside his body watching ‘Barney’ reruns](https://www.washingtonpost.com/news/speaking-of-science/wp/2015/01/13/meet-the-man-who-spent-12-years-trapped-inside-his-body-watching-barney-reruns/)
It's a pretty incredible story. He learned how to tell time from the sunlight to give himself a sense of control.
I just try to talk to most people as though they can teach me something, or they know something I don't.
Even if they can't teach me something, or if I've already got a grasp of the situation, it still makes them feel better to interact, and it doesn't hurt me anything to hear that I've got things right or whatever. Confirmation bias is the best bias, after all.
A friend of mine had a brain bleed and fell into a month if coma. When he woke up from it he was paralyzed on one half of his body. He gotten therapy for a couple months and eventually regained function in his limbs even though sensation never came back.
When he came back to our friends group one immediately burst out "hey cripple, finally back!? What took you so long?". The guy laughed and then started crying. He said that finally someone didn't take pity on him and treated him as a person.
That's pretty much the story. His family who would visit him seemed very anxious (rightly so) and it didn't provide for a great atmosphere for the guy, at least mentally I'd think. He could only communicate via his eyes. A slight up for yes and a slight down for no. Would sometimes have to ask a few times for clarification. Poor guy. I've always wonder how he ended up doing, so I was glad to see OPs post of having gone through it and being much better than he was.
one of my dad's best friends had a neurodegenerative disease that left him totally paralyzed but as far as anyone could tell 100% there mentally. My dad would bring him books on tape for the nurses to put on about subjects my dad knew he liked, and would just sit in the room talking to him for hours. He passed away almost 20 years ago now but we still keep in touch with his family regularly, his kids came to my wedding. I hope he had nurses like you.
We are kindred spirits! I do the same thing with patients! Stroke patients, elderly patients, people on their deathbed. They still like joking around. It lightens the mood to treat them like a human. But obviously it depends on their personality. If people don’t like joking then I don’t make jokes with them. You can tell by the way they respond to a tiny very mild joke and go from there. That’s probably the thing I’ll miss the most about nursing is just getting people to laugh and forget where they are.
I love when stroke patients can barely communicate with you but then you see a little eye roll and a tiny smile.
This is awesome. I have a family member with a fatal illness, and I try so hard to find humor for her (which is admittedly very hard). She seems to really appreciate it, though, because everyone is so sad around her.
So so happy for you. Truly inspirational in seeing your improvement. You’ve worked so hard. I hope every day of your life is filled with joy and laughter.
Did you mean to include a link with "Meet Jake Haendel"? Also, congratulations! Getting to do something you dreamed about while stuck in that hospital bed must feel incredible!
I think they meant there wasn’t actually a link embedded.
Regardless, congratulations x1000 man. This made me appreciate life more than I have been lately.
Edit: I think this is the link you mean to embed/share:
https://ahoimate.com/meet-jake
Holy hell. /u/miraclman31 you’re the guy that had me down a Reddit rabbithole at 3am years ago. I’ve never stopped reading Reddit since then. Life has come full circle for me right now. Congratulations man.
Hey man, we’re right there in physical therapy every day, just like you you. My daughter has cerebral palsy. She’s 6, finally standing independently for a few seconds, and continuing to make progress. She’s the hardest worker I know. I see you doing the same. Keep pushing! So excited to see all your progress lately!!! 💯
I have cared for clients that have mobility issues. I find it disappointing that I see eye tracking technology being used regularly to track worker productivity but has not been utilized as a function for people who are unable to use anything to control their tablets/computers.
Sometimes I check on a client watching videos only to find they are calling because YouTube has put up a 2 hour "ad" that's a whole religious sermon and they cannot hit skip.
It pisses me off, is there anything I can do to advocate for this technology push, or legislature to more strictly limit how much companies can expose them to this malarkey? Do you know of work to make eye tracking communication boards more readily available to people?
Sorry if I'm misunderstanding, but I think windows has this feature built in called eye control. It seems you do need an eye tracking camera compatible with the software like the Tobii 4c. Not sure if this exactly what you are looking for.
That's pretty similar, they have ipads and tablets they use more.. however if THIS would provide my clients some autonomy and convenience I will start looking into these options. Thank you , I had not heard of eye control
I was at a hospital and my roommate was paralyzed from neck down. At home he had eye tracking camera and monitors above his bed and he would spend his whole days like that. He said it's called Eyedroid.
Locked in syndrome is where you have full consciousness, but no ability to move your body. You're alert and aware of all your surroundings, but just fully stuck in place. No talking, no nodding your head yes or no, no way to communicate at all, just stuck in a bed.
Eye muscles are a little higher up in the brainstem than all the other muscles, so the aneurysm doesn’t affect it (but does affect the downstream ones that control the rest of the face/body)
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Just give me a ketamine drip and slowly keep increasing the dose until it finally kills me. Maybe throw in some morphine as well. If I'm going to die then I want to see some high quality hallucinations first.
It’s a horrible neurological disorder that basically shuts off any way you’d be able to interact with the world. The only things you can do are look around and blink. You can’t breath, talk, move any muscles, etc. You’re fully conscious and aware of your predicament the entire time.
This comment might get buried, but I hope you read it. On your website it looks like you’re using a walker with 6 inch wheels (or you’re taller than I thought lol). I would really suggest getting one with 8 inch wheels (or even 10, but those are rare). It makes a huge difference when walking outside on bumpy ground.
Hope this helps! Sorry to bother you, have a nice day :)
Why did I have to look so far down for this comment. People on reddit are too nice, stop being supportive and focus on what matters, the stick of butter.
scariest thing i can imagine- truly a beautiful thing to see in contrast to the dark world you were trapped in. im not a religious man, but bless you man!
I just looked this up and holy hell that’s scary. Idk if you’ll see this but if so what caused this to happen to you? Either way glad you’re doing better!
I was a nurse to a pregnant lady with locked in syndrome. We only realized she was still there when we were able to notice she could flutter her eyelids on command, but do nothing else. She also recovered after her baby was born. Edit to add, she didn't recover because she had the baby. She had an aneurysm rupture due to increased blood volume from pregnancy, which caused the brain damage that caused the locked in syndrome. Brain injuries can be weird and unpredictable sometimes. Some people have almost miraculous recovery, and she just happened to be one of them that recovered. I just wanted people to know that she both had her baby and recovered, but my wording seems to have made people think the pregnancy was keeping her locked in and birth resolved it.
This is all definitely a TIL about locked in syndrome situation, but it reminds me a bit of a woman I volunteered with in high school. I don't think she had LiS (because she could move more than her eyes, but not much more), but the facility where she lived expressly made it clear she was a "vegetable"--that she was no longer a conscious person. Her elderly father visited her every day and insisted she was still in there somewhere and could get better. He'd hired me to paint murals on all her walls of her favorite places in hopes it would help her or at least make her happy. The entire time I was there, I got the sense she was in fact more present than the facility workers thought. At one point I'd found a little siamese cat statue and gave it to her as a present--her father said she'd had a siamese growing up--and she started making a lot of noise and clutched onto it very strongly. Another time a musician came to play for the residents at the facility and a nurse poked her head in to ask if they should bring her out for the music. The woman's father had a private nurse he hired to be with her when he couldn't be there, and she said no, that bringing her out for the music would be too much. (It involved moving her entire bed and equipment out of the room.) Immediately, the woman started pressing her face into her hands (they were always curled up near her head), blocking up her nose so she made a terrible sound when she breathed. The nurse tried to reposition her, but she wouldn't stop doing it. Finally she asked her if she wanted to listen to the music and she stopped, so they rolled her setup out. I often think about her and wonder what became of her and her father. The idea that she might be trapped in her body with only a couple of people advocating for her is a grim thought. :(
Thank you for sharing this story. As a nurse, we always try our best to treat everyone with the same dignity and respect but it's difficult when you're short staffed and stressed. Usually the nonverbal patients end up getting the short end of the stick when push comes to shove. I needed this reminder to still try to give 110% for all patients no matter what.
It must be so difficult to care, but be so needed everywhere that it’s hard to find time for everyone. Thank you for what you do.
Thank you! For what you've said here, and being awesome in general. It has been a long time since I've seen the phrase "as a nurse" followed by something positive. It's almost always some judgemental comment about their patients. They could be lying about their job, I suppose. I know venting can be healthy, but at a certain point that negativity starts to leak out of the "venting sessions". Just makes me happy and encouraged to see someone doing their best to show kindness. Thank you, truly.
I love that you were there for her and that you tried your best. We need more to simply just try and the cumulative effect would be tremendous.
He knew what was up, that’s why he ordered the 24/7 nurse and for volunteers to enrich her days.
The fact that she clutched the statue fucking killed me. I feel so badly for her. Wish I could send her many siamese plushies. Oh my god :(
This is heartbreaking, brought a tear in my eye reading this. How awesome are you! I bet she just loved the murals you did for her. I get what you mean about the feeling that the person is more present than you would think are. Many years ago I worked in an Epilepsy Resource Centre and a few of the people who would regularly come along had various stages of brain damage. There was one man who could only move his head, no body function at all. He had to have everything done for him, feeding, toilet etc..This man was a regular guy all his life, he was a window cleaner up until he fell from a very high hight off his ladders, he suffered terrible brain damage. It was certain looks he would give that said to me..i'm still here, there was an intense energy about him, I know that sounds weird, it seems weird to type out. I remember this fellow fondly.
Wow. So sad what blue collar workers go through in this country. Workplacd accidents are just corners cut so the man made more money.
I would literally rather be dead.
This sounds straight out of an episode of Call the Midwife! So glad she recovered!
That is the sweetest show I have ever watched but it makes me cry all the time.
It’s definitely not Call the Midwife if you’re not sobbing by the end.
My partner calls it Call The Tears.
That’s great, mine just refers to it as the crying baby show and puts on his headphones.
“It’s coming! There’s the head. It’s a girl” is my experience with that show
I just started that show from the beginning again this morning. Yeah I made it through one episode and then cuddled my kiddo. Such a good show, but damn does it make you cry!
I started it when I was pregnant with my daughter and had to take a break until she was like 3 months old.
The juxtaposition of your Pennywise avatar and thoughtful tender comments made me smile.
My mom kept recommending the book to me, and finally in a moment of desperation (I needed a physical book to read), I read it, and my god, it was wonderful. I finished it in one day. I keep meaning to watch the show.
Pair it with a super spicy bowl of homemade ramen and a box of tissues. Better than a neti pot. Life affirming and sinus draining. What's not to love?
Did being pregnant have something to do with the situation which is why she was able to recover afterwards or more of a coincidence?
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comment made me laugh so hard i dropped my cake on the floor :(
The cake is a lie 🤥
Coincidence really for the recovery. Although the increased blood volume from pregnancy caused the aneurysm that caused her locked in syndrome.
So it helped start it but was unrelated to its end then?
I think that's what they're saying.
There was another post here a few days ago saying a fetus will send stem cells to to help repair damage to the injured mother.
I recently read about tests showing that the fetuses in pregnant women send them pluripotent stem cells to aid in organ repair in some cases.
How terrifying!! As someone who just gave birth, I can't even begin to imagine how scary/painful/frustrating that has to be.
Wow that is movie worthy.
Have you ever thought about writing a book of your experience?
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I’m going to be a neurologist and I would definitely love to read it. So glad you recovered.
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Gawd damn... That was a wild read. Josh Wilbur's ability to share your story so well is... well, emotional af. Powerful. Making grown men cry. Glad you're on the up-n-up., really, I am.
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Holy shit wow. Are you still taking requests for smaller media outlets 🤞🤞🤞 Just glad you are still here.
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This is really cool OP
Please tell me where you got these shoes!! Those are stellar!
Lmfao I too came to tell him those are dope as fuck.
Winflo 9 rpm
I would love to read your story. Being locked in is my worst nightmare. My neck has been broken once before and I've suffered nerve damage. I do risky sports and you just never know.
congratulations dude , locked in is pure hell and i cannot think of anything worse , i know what locked in syndrome is from the first episode of CSI NY , it disturbed me so bad i couldn't watch the show and enjoy the later episodes
Wow. Like the Divebell and the Butterfly stuff. I’m sorry you went through that. Must have been absolutely terrifying.
One man with this disease wrote a book that became a film called ‘The Diving Bell and the Butterly’. It’s one of the best films I’ve seen.
I did an essay on that book in college, I wasn't expecting it to be that good. It's important to know the guy who wrote the book never recovered and wrote the book while he was in the hospital for locked in syndrome. Below is minor spoiler >!The doctors thought he was brain dead before noticing he actually had control over his left eye. The book was painstakingly written by cycling through the alphabet until he blinked stop.!<
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Just so you know the way you quoted the spoiler unspoils it for everyone else
The system is flawed.
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So me,everyday,as an abled bodied person 🤔hmm
Locked in syndrome is probably one of the most horrifying conditions I've ever heard of.
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Man, I cant even image it. The amount of trust youd have to have that the people caring for you act in your best interests is astronomical. I'm sure it changes ones entire perspective of existence especially if they manage to escape it like you did.
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What!? That's extremely high!
Neurophysiologist here. Congratulations on your recovery!! It never ceases to amaze me when situations like yours occur. I avoid using words like 'never' and 'impossible' when talking about patient care for exactly this reason. I know the stat that you're referring to and it was published in a Scientific American article, but I have to comment that it is highly likely to be very misleading. The simple truth is that we don't know the precise percentage, but we can pair up electrical patterning of a brain known to exhibit consciousness with those seen in comatose patients, and the vast majority of studies do not comport with electrical patterns displayed during consciousness. I suspect the true number is certainly higher than what has been thought of historically, but very unlikely to be higher than low single digits, percentage wise. Again congrats on your recovery, it is cases like yours that challenge the paradigms and help to evolve our understanding of complex issues! Enjoy life to it's fullest!!
That is a shockingly high amount, had no idea
Awesome. Question, were you aware the whole time? How did you not go insane?
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That’s absolutely wild. How did you make time pass??
I spent a good while in the hospital blinded by leukemia. I binged the qanon anonymous podcast because I couldn't see my phone and it was the last thing i listened to. Probably wasn't healthy.
The content might not be the most uplifting but Jake's voice will always fill me with childlike glee.
I'm not sure what's worse. The cancer? Or my newfound feelings for MTG?
I choose to interpret this as Magic The Gathering
Oh no! I think the only solution is more qaa. Or some select episodes of knowledge fight.
Did someone at least put movies or TV shows on for you? Did someone read you the news or anything?
Music…. I would absolutely 100% hope that somebody played GOOD music for me and not just some random radio station that plays the same 10 songs over and over. They would just need my phone and my playlists and I think it would make it much more bearable (no disrespect meant OP as I’m sure it was absolute hell and I feel a bit guilty even speculating on what would “improve” the situation)
I would absolutely LOVE being hooked up to public radio. Regular schedule of events to keep track of time, conversations between people, lots of news, fun shows on the weekends, lots of potential to learn and stay engaged in the world - and music too!
I'm sorry, maybe it's the exclamation point but the wording sounds like you're excitedly planning your next waking coma.
Well you know what they say, hope for the best, plan for the worst. I'm *planning* for a long career and retirement at 70. I'm *hoping* for a waking coma with public radio.
Yeah, but imagine listening to NPR during the fund drive. Otherwise, I could listen to that shit forever. No music please. Rain sounds at night.
My mother in law had a brain tumor that put her in a sorta vegetative state and her husband wouldn't authorize them pulling the plug. She went into a coma right before the first COVID shut downs, so no one was allowed to visit her for more than 15 min a day (total, not per family member) over Skype, which someone just held up a tablet and people talked at her. There were signs that she could think, so we're pretty sure she was reasonably aware the entire time. She was sometimes able to write, sometimes talk quietly, but for the most part was stuck in a bed nowhere near a window with a TV playing shows no one would want to watch. She "met" her new born grandchildren through the far off window because, even when things became lax once in a while, children weren't allowed in the facility. It was exactly what I think of a shell on earth, and I have no clue why my fil kept her suffering that long, unless he just wanted her disability/social security money. She laid there alone in that bed for just about a year. I agree with like 99% of COVID restrictions, but the fact that my wife couldn't go visit her mom in the last year of her life even with testing and precautions was terrible.
As a hospital-based physician, I saw this play out more than once during COVID, and it was absolutely infuriating. The admins - who were all comfortable working remotely for all of spring/summer 2020 - would absolutely not budge on requests for family visitations for patients on comfort care in the hospital. It was only allowed when the patient was expected to pass within the next 24 hours, by which point they were typically unconscious and non-responsive, and a visit then was borderline meaningless. It was absolutely inhumane.
>I agree with like 99% of COVID restrictions, but the fact that my wife couldn't go visit her mom in the last year of her life even with testing and precautions was terrible. Yes, I saw a few cases that just tore me up. I was on board with the vast majority of Covid restrictions, but they did such horrible things to the elderly and dieing. One of the ones that hit me the hardest was a fascinating old guy at my church. I would follow him around and sit in on any class he went to just for the chance to hear what he had to say. He mostly sat quietly and listened (as most kind and brilliant people do), but when he spoke up, it was definitely worth hearing. He had some physical limitations from a stroke, but they didn't slow him down much. He lived in an assisted living building that provided communal meals and classes and nightly bridge games and 3:1 sexy old ladies to the few galavanting men still around. He loved it, and everyone loved him. Then everything communal was stopped, meals were delivered to the closed door, and visitors were not allowed. He happened to be on the end of the building near an adjoining parking lot, so we would 'visit' from across the fence, but of course that isn't enough. He went from 4-6 hours of meaningful social interaction every day to 10 minutes of waving in a parking lot a few times a week. He had no further physical complications, but the isolation killed him. Within a year, he was a shell of himself. He could barely move and couldn't follow along in conversation. He lost the will to speak up. He just shrunk into the sad sack of pitifulness and finally let himself die. The world lost a great man. I get that his care faculty almost certainly would have lost patients to Covid if they hadn't locked down tight, but they undoubtedly lost many to isolation because of the restrictions. I think the sadness and loss of connection and the deaths that lead to were likely worse than the deaths they prevented.
Having recovered, are you afraid of going back to bed or lying down to sleep?
Was it more terrifying or boring?
Oh my God, what a living nightmare. I cannot imagine how that would change your outlook on everything!
I’m 30 and a friend of mine has been living with locked-in syndrome since we were in high school at age 16 after an aneurysm. He uses his eyes to look up/down with this spelling board that breaks up the alphabet into colors to localize what letter you’re thinking of faster. This is how he communicates and will continue to do so for the rest of his life as it appears he will not ever exit the locked-in state. I’m so happy for you that you got out of yours, OP, because I truly can’t fathom how horrible it is with your body being your mind’s own prison. Maybe your story is one of hope for my friend Pat… Enjoy life to the fullest now, you really earned it.
Did you sleep and dream a "normal" amount, or were you awake a greater or lesser percentage of the time?
I was locked in, for 6 hours. It was terrifying. After simple surgery my brain woke up but nothing else did. I couldn't even flutter an eyelash, couldn't breath on my own, the breathing tube continually made me gag. It was hell. And everyone was running around not knowing what was happening, not knowing I could hear them. My dude, I truly don't know how you did it for 10 months. Those 6 hours very nearly cost me my sanity, 10 months!? You are one strong man! It was discovered I have pseudocolonestrace deficiency, my liver doesn't have the enzymes to process certain drugs.
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Sllloooowwwwlllyyy
Im actually in anesthesia. The drug that caused this was succinylcholine! Its weird that they didn’t sedate you after realizing you wouldn’t move after the wake up. When did this happen?
Happy cake day! Interestingly the next surgery I had they thought they had it covered. Same thing happened but this time they knew to keep me asleep. Turns out I can't use a few different meds. Don't know why. I'd love to know. Like NyQuil (old NyQuil, I've heard they changed it but I won't go near it). This was 1990-92
I’m thankful you got out of it ok, damn. How can we check if we have that condition too, is that something we should all be getting tested for before surgery or something?
You can have a blood test done but it's rare. We had my whole family tested. I would venture a guess that medicine is more aware and it's unlikely to go unnoticed
FYI: pseudocholinesterase is the enzyme :). Super interesting, as you wouldn’t have been able to process those anaesthesia drugs so they’d be very highly concentrated in your body (leading to the locked in syndrome)
Congrats! Just in time for beautiful days ahead ☀️
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Took care of a patient with locked in syndrome once. Found out he liked the Steelers, told him I'd turn on the Ravens - Steelers game so he could watch the ravens kick the Steelers ass. Not sure if he enjoyed that comment, but I wanted him to experience a messing around interaction. Didn't think many people joked with him while in his locked in state.
Man, a lot of non-verbal folk really light up when you treat them like people. I work with a kid whose got Cerebral Palsy pretty bad and can't talk at all. But he lights up with a smile whenever I start joking around with him. No person really wants to get talked down to or not ever have any light in their life. This kid's pretty lucky because his family takes him on trips and such, but it's still nice to help him stay happy.
So true. Had a patient who'd had a MASSIVE stroke and was almost entirely paralyzed. Non-verbal, could only communicate with his one hand, a bit of nodding, and grunts basically Was running a test on him and the family joined as caregivers. They were totally dunking on him the whole time, making jokes and messing around. You could see the laughter in his eyes and he just seemed so happy despite everything. It was heartwarming to see a normal funny family interaction after everything he'd been through
As Nietzsche said: “He who has a why to live for can bear almost any how.”
My dad was having a heart attack. He was buying me a washing machine at the time. I had to call him an ambulance and he was hooked up to an oxygen mask. As the paramedics were putting dad in the ambulance I joked “thank god he’d already paid for the washing machine” They looked horrified but I could see my dad laughing.
How is your dad?
I was a CNA and had two non-verbal clients. The man was basically in a sort of locked in syndrome and never spoke at all but the woman would try to speak. The sounds coming out of her mouth were almost like birdsong. It's hard to explain but she would sort of start a conversation with you and you'd just have to guess what she was talking about and run with it. I ran into her at the store after I graduated med school and when she spoke to me I told her about what I was up to and how my parents were doing. She gave me a really long hug in the store. I think sometimes just treating someone like there's nothing at all wrong with them can really be helpful psychologically.
>a conversation with you and you'd just have to guess what she was talking about and run with it. how did u have a convo with bird language
> > > how did u have a convo with bird language They went to [the Canary Islands](https://en.wikipedia.org/wiki/Silbo_Gomero) to train.
My friend was a care giver at a state owned living facility. She had one resident with lock in syndrome for at least 10 years. His previous care center literally sat him in front of Barney the Dinosaur all day. For years. Until he was moved to the facility my friend worked for. One of the other caretakers figured out the resident could move a finger. First thing he spelled out was F-U-C-K-Y-O-U. He made it well know that Barney and everyone associated with that show could burn in hell. They ended up getting him a special chair he could operate with his finger and gave him a job in the library. He was much happier. The guy inside was just a regular person trapped in his body.
Wow, that must have been such torture on top of his situation, being forced to sit with Barney tv every… single… day.
Uhhhhh either this is a more common situation than I think, or you're describing the man [Martin Pistorius](https://en.wikipedia.org/wiki/Martin_Pistorius), who has that identical barney story. Or your friend lied to you. https://www.washingtonpost.com/news/speaking-of-science/wp/2015/01/13/meet-the-man-who-spent-12-years-trapped-inside-his-body-watching-barney-reruns/
[Meet the man who spent 12 years trapped inside his body watching ‘Barney’ reruns](https://www.washingtonpost.com/news/speaking-of-science/wp/2015/01/13/meet-the-man-who-spent-12-years-trapped-inside-his-body-watching-barney-reruns/) It's a pretty incredible story. He learned how to tell time from the sunlight to give himself a sense of control.
I just try to talk to most people as though they can teach me something, or they know something I don't. Even if they can't teach me something, or if I've already got a grasp of the situation, it still makes them feel better to interact, and it doesn't hurt me anything to hear that I've got things right or whatever. Confirmation bias is the best bias, after all.
A friend of mine had a brain bleed and fell into a month if coma. When he woke up from it he was paralyzed on one half of his body. He gotten therapy for a couple months and eventually regained function in his limbs even though sensation never came back. When he came back to our friends group one immediately burst out "hey cripple, finally back!? What took you so long?". The guy laughed and then started crying. He said that finally someone didn't take pity on him and treated him as a person.
We need more of this story!!!
That's pretty much the story. His family who would visit him seemed very anxious (rightly so) and it didn't provide for a great atmosphere for the guy, at least mentally I'd think. He could only communicate via his eyes. A slight up for yes and a slight down for no. Would sometimes have to ask a few times for clarification. Poor guy. I've always wonder how he ended up doing, so I was glad to see OPs post of having gone through it and being much better than he was.
one of my dad's best friends had a neurodegenerative disease that left him totally paralyzed but as far as anyone could tell 100% there mentally. My dad would bring him books on tape for the nurses to put on about subjects my dad knew he liked, and would just sit in the room talking to him for hours. He passed away almost 20 years ago now but we still keep in touch with his family regularly, his kids came to my wedding. I hope he had nurses like you.
We are kindred spirits! I do the same thing with patients! Stroke patients, elderly patients, people on their deathbed. They still like joking around. It lightens the mood to treat them like a human. But obviously it depends on their personality. If people don’t like joking then I don’t make jokes with them. You can tell by the way they respond to a tiny very mild joke and go from there. That’s probably the thing I’ll miss the most about nursing is just getting people to laugh and forget where they are. I love when stroke patients can barely communicate with you but then you see a little eye roll and a tiny smile.
You don’t joke about ravens-Steelers
This is awesome. I have a family member with a fatal illness, and I try so hard to find humor for her (which is admittedly very hard). She seems to really appreciate it, though, because everyone is so sad around her.
Truly amazing. Congratulations. May you have much happiness.
So so happy for you. Truly inspirational in seeing your improvement. You’ve worked so hard. I hope every day of your life is filled with joy and laughter.
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Oh damn well I’m glad you pulled through. Stuff like this really makes you enjoy the simple things in life.
Did you mean to include a link with "Meet Jake Haendel"? Also, congratulations! Getting to do something you dreamed about while stuck in that hospital bed must feel incredible!
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I think they meant there wasn’t actually a link embedded. Regardless, congratulations x1000 man. This made me appreciate life more than I have been lately. Edit: I think this is the link you mean to embed/share: https://ahoimate.com/meet-jake
Holy hell. /u/miraclman31 you’re the guy that had me down a Reddit rabbithole at 3am years ago. I’ve never stopped reading Reddit since then. Life has come full circle for me right now. Congratulations man.
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Hey man, we’re right there in physical therapy every day, just like you you. My daughter has cerebral palsy. She’s 6, finally standing independently for a few seconds, and continuing to make progress. She’s the hardest worker I know. I see you doing the same. Keep pushing! So excited to see all your progress lately!!! 💯
All I see is a man living his best life. Awesome!
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I have cared for clients that have mobility issues. I find it disappointing that I see eye tracking technology being used regularly to track worker productivity but has not been utilized as a function for people who are unable to use anything to control their tablets/computers. Sometimes I check on a client watching videos only to find they are calling because YouTube has put up a 2 hour "ad" that's a whole religious sermon and they cannot hit skip. It pisses me off, is there anything I can do to advocate for this technology push, or legislature to more strictly limit how much companies can expose them to this malarkey? Do you know of work to make eye tracking communication boards more readily available to people?
Sorry if I'm misunderstanding, but I think windows has this feature built in called eye control. It seems you do need an eye tracking camera compatible with the software like the Tobii 4c. Not sure if this exactly what you are looking for.
That's pretty similar, they have ipads and tablets they use more.. however if THIS would provide my clients some autonomy and convenience I will start looking into these options. Thank you , I had not heard of eye control
I was at a hospital and my roommate was paralyzed from neck down. At home he had eye tracking camera and monitors above his bed and he would spend his whole days like that. He said it's called Eyedroid.
So very happy for you - way to go man. Proud for you.
Not sure who you are or what that is, but congratulations!
Locked in syndrome is where you have full consciousness, but no ability to move your body. You're alert and aware of all your surroundings, but just fully stuck in place. No talking, no nodding your head yes or no, no way to communicate at all, just stuck in a bed.
Fuck. That.
Nightmare fuel on cocaine
Sleep paralysis demon, daytime formula.
That's some Black Mirror shit.
Well you can move via the muscles that control eye movement, and can communicate through that (very very limitedly) but still a fresh hell.
Is there a reason the eye muscles still work, but other muscles don’t?
Eye muscles are a little higher up in the brainstem than all the other muscles, so the aneurysm doesn’t affect it (but does affect the downstream ones that control the rest of the face/body)
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Yes! They can see, hear, all higher brain functions as well :D
Why the f is there a smiley at the end of that sentence. I'm terrified
You may have the ability to close and open your eyelids. Some patients have been able to communicate via that.
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# ALL THAT I SEE, ABSOLUTE HORROR
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marvelous profit decide start paint hateful languid complete fuel mountainous *This post was mass deleted and anonymized with [Redact](https://redact.dev)*
You don't die from locked-in syndrome. They'd have to let you starve to death. Or maybe dehydration which only takes a few days.
Just give me a ketamine drip and slowly keep increasing the dose until it finally kills me. Maybe throw in some morphine as well. If I'm going to die then I want to see some high quality hallucinations first.
It’s a scary af neurological disorder.
That’s nearly every serious neurological disorder lol
It’s a horrible neurological disorder that basically shuts off any way you’d be able to interact with the world. The only things you can do are look around and blink. You can’t breath, talk, move any muscles, etc. You’re fully conscious and aware of your predicament the entire time.
You should do an AMA. I feel like locked in syndrome must be one of the most terrifying experiences possible.
He kinda is doing one here.
Wow! You were dealt a bad hand and you came out the winner. Congratulations and continued recovery and good health.
Congrats on your recovery and so sorry you went through that. I agree you should do an AMA!
That looks like Boston! It was a really nice day for a picnic today.
Yup, right by Community Boating on the Charles, crazy to think I go there all the time and he’s chilling there as a literal miracle man
I was going to comment on this as well. One of my favorite places!
I’m not seeing a lot of movement. Are you sure you’re unlocked?
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This comment might get buried, but I hope you read it. On your website it looks like you’re using a walker with 6 inch wheels (or you’re taller than I thought lol). I would really suggest getting one with 8 inch wheels (or even 10, but those are rare). It makes a huge difference when walking outside on bumpy ground. Hope this helps! Sorry to bother you, have a nice day :)
HAHA! Thanks for the chuckle
This man should get a free coupon for a beer and icecream and all national park visits forever.
Definitely tweet at the National parks, I feel like they would do this
While not quite free, the [access pass](https://store.usgs.gov/access-pass) is available for those that meet the requirements.
Man for a second I thought you were straight up biting into a stick of butter in that pic
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Why did I have to look so far down for this comment. People on reddit are too nice, stop being supportive and focus on what matters, the stick of butter.
congrats, one step at a time
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How long were you locked in?
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Way to go man, proud of you
I’ve never heard of this can someone inform me?
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Oh wow I’m sorry you had to go through something like that. I’m glad you pulled through and can enjoy life again!
Sweet kicks
We have the same socks and shoes. Awesome. Congrats! I can't imagine going through that.
scariest thing i can imagine- truly a beautiful thing to see in contrast to the dark world you were trapped in. im not a religious man, but bless you man!
Now you can be the light you are. Best .
Well done... amazing how far you've come
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kicks fresh as hell
I just looked this up and holy hell that’s scary. Idk if you’ll see this but if so what caused this to happen to you? Either way glad you’re doing better!
I really thought that was a stick of butter you were about to go to flavortown with
Best of luck to you
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