I am The guy who survived hospice and locked-in syndrome. I have been in hospitals for the last 3+ years and I moved to my new home December 1, 2020 AMA

When did you realise that you were starting to recover?

Blinking for "can you hear me?" was the first time I was able to communicate and that's when I realized that the doctors thought there was a chance I was in there. But then they started asking me other questions like "Blink if you know where you are. Blink if you know who the president is.. etc" Many were convinced that my blinking was just an involuntary action but over the next few weeks, I was taught how to stick my tongue out (barely) and that was my "yes"... so then we had a yes/no system which took me out of being completely locked-in into being virtually locked-in.

thank you for sharing this. I am a former speech pathologist who worked with connecting patients with locked in syndrome with assistive technology to communicate. My first patient was a gentleman who had been an attorney and who had had a bad brainstem stroke. He was fully dependent for years. One day one of the best nurses aides on the unit came and got me and said she thought he was responding to her. I did an assessment and agreed. I had done numerous assessments on him prior and he hadn’t responded. I always wondered if there was something I had missed but your story reminds me that neurological status can and does absolutely change over time. I am very glad to hear you are recovering well.

edit: Thanks for the awards, fellow redditors. I feel your love, but OP definitely could benefit from financial support if you are so inclined (i hope this doesnt break any rules, but the link is here: https://gofund.me/3c89fe43).

First of all, thank you for sharing. Personally, I was in there the entire time but during that time I kept thinking about all the other patients in the Neuro ICU that may be experiencing exactly what I am. I believe it is very important for especially speech pathologist to check in every day to see if they can break through with a form of non verbal communication because neurological status can change overnight.

Thank you for what you do! Check out this video for speech progression.

Oh wow that video was beautiful. Amazing how far someone can come in 1 year! Thank you so much for sharing.

Thank you for watching!

Sorry if this was already asked, but I was wondering: What did the process of becoming locked in feel like?

I ask because I had a very intense and prolonged case of ICU-induced delirium last year. I remember at one point I had a very clear view of reality, but I literally had trouble controlling my body, communicating, or even just barely moving. It was transient, thankfully, but it was such a strange experience.

Before that, when I woke up in the ICU, I was on a ventilator and I had rhabdo bad enough that I literally could not lift a muscle. I could only communicate by crying and blinking. Was somewhat horrifying (in addition to all the other weird neurological issues I had that were likely a result of hypoxia at some point).

Well I went and watched myself gout from my able-bodied individual to losing all function in 4-5 months it’s really terrible! What you went through sounds equally as awful very sorry how are you doing now?

Were you able to reliably move your eyes at all? I imagine one could also build a communication table with that.

When I was completely locked in I only had involuntary vertical Eye movements

So, before you were able to stick your tongue out....

Your doctor's hadn't figured out to ask 1 blink for yes, 2 blinks for no? That's honestly kind of sad that they didn't figure out how to advance communication with you earlier. You'd think the doctors/nurses had worked with a neurologist or patients with expressive aphasia before.

My guess is that 2 consecutive blinks might be more than he was capable of at that time.

Correct sir. Gold medal!

Oh they had tried. Unfortunately there was no distinction between one or two or even if I was blinking. It really appeared to be involuntary in the beginning because it's not like I was able to control the speed or timing... It took a lot training from a speech pathologist to even relearn how to voluntarily blink once they realized I might be able to.

Did you train yourself to blink more voluntary, or did it just start one day?

I was always trying with no luck and then one day, I guess it just happened!

Can you please describe your sense perception and understanding of events during locked in syndrome?

Also, great to hear you've overcome those initial challenges! I'm sure there are more ahead and best wishes for you. :)

Sure I'd be happy to. I fully understood everything. My perceptions were good although I was extremely hypersensitive to everything and my internal clock was questionable as in I did not know how much time had elapsed, but I did have a pretty good idea. I could taste, smell, hear, see and feel, but like I said, I was hypersensitive to all these things and very uncomfortable. The weight of a sheet would make me itch and burn up and when a nurse would walk by, the breeze from her walking by would make my skin feel like it was burning.

Was the hypersensitivity due to lack of stimulation / neural input deprivation?

Probably everything, my autonomic dysfunction and storms threweverything out of whack

The way you describe it sounds very similar to how lots of the left side of my head and my left arm felt after I had a stroke in my 20's.

My recovery was relatively swift, but for the first few months, reaching into the fridge, the cold almost felt like it was burning. If somebody touched my hand, the roughness of their skin felt like sandpaper against mine. 🤷‍♂️

I don't have a question, man. Just reading appreciating your responses. Much love! 👍💜

Thank you for sharing, I appreciate it. How are you doing nowadays?

Physical recovery is, say, 99%

I still don't like to be touched on my left side, but other than that. No complaints.

Cognitively, is a slightly different story. I basically feel like I have ADHD turned up to 11 and struggle with a lot of social situations. I can't hold a job down, but I think I'm a pretty good parent, so, could definitely be worse.

99% sounds pretty good! Congrats!

You're right, it can always be worse but as long as you're doing your best, that's what counts.

Side note: my left side if fucked up too. Feel ya there!

Would it have helped you mentally to have been shown the time and date on a daily basis?

I'm not sure if it's something that would have helped, but it was something I wanted and was seeking constantly. There was a clock just out of my positional eye gaze and it drove me fuckin nuts.

I'm assuming your different transfers happened via ambulance. What is something that the crew transferring you could have done or did do to make transfers easier on you?

I'm a paramedic, it can be very nerve wracking to take patients who can't communicate what they want or need. Just want to do right by them.

Hey man, thank you for bringing this up! During this time I was in a constant state of autonomic storming and every time I was transferred via stretcher/ambulance. The stress of it all would send me into a severe autonomic storm and I would usually return back to the ICU within a few hours of reaching my destination. I do not actually have advice about what could be done better but calm tones, reassurance that the patient is safe, talking through what you are doing at all times, reassuring them that they are okay and try not to hit too many bumps.

Thank you for what you do!!

When you “broke out,” was it sudden or was it a slower process?

It felt slow to me but I've been told throughout this entire journey since July 4, 2018 that I'm recovering at lightning speed. That said, I hadn't been able to communicate for 2 years, and there was so much I wanted to say that simply being able to answer "yes" or "no" felt like a snail's pace.

So then I guess my next question would be; what point did you start to realize that you could communicate...? Because I’m sure you had tried nonstop, but then one day that changed, right? You were able to do something that someone recognized as a form of communication, at least that’s what I’m speculating. What was that like emotionally to you?

When I was trained with the letter board and able to signal for a letter to form a word, it was amazing! I could finally communicate simple words like, hot cold, ouch, off... etc. That quickly got really frustrating because not only was I misunderstood but I had about a year of two of thoughts that I desperately needed to get out!

Make no mistake, the initial blink was not super noticeable or different from the involuntary blinks I had been doing. It took about three weeks to retrain a recognizable blink.

I believe what they were asking, and what I am also wondering, is what was the first time a nurse or doctor realized that you weren't in a "coma" anymore? Like what was your emotional response to finally someone noticing that you were "aware"?

Well since this was on/around the 4th of July, it was my personal Independence day. The feeling was unimaginable and indescribable.

what an amazing story. thanks for doing this ama.

Thank you!

Dude, I am so happy for you.

Right around the time you were coming out of your shell (2018), my dad was killed right in front of me, and I experienced a temporary mental break resulting in unresponsive spastic catatonia. For those who don't know what that's like...think of the scenes in House where they wheel a rigid, eyes-open patient on the gurney and all they "see" is the ceiling lights passing by...that shit is what it is really like when they roll you to ER. I still remember staring at the roof of the elevator, and I remember crying silently when the ER "heavies" performed a sternum rub and then wrenched my arms above my head to install an IV. That shit hurt.

After a massive dose of Ativan and who knows what else, I was myself again mentally, but I still could not speak or move most of my body other than my eyes.

I was aware of locked-in syndrome and was terrified. Thank the deities it was temporary. I can sympathize with your experience so much!! I'm so happy for you and your recovery -- stay strong, brother! We're rooting for you!!!

Oh my God man I’m so sorry! I am really happy you overcame this I have heard of such things happening to people from Trumatic events. So sorry for your loss that must’ve been terrible I can’t imagine.

How did you occupy yourself during your time locked in?

Also, could you open and close your eyes

I occupied myself with a lot of self communication. I talked to myself in two voices about literally everything. There is an article in the Guardian that goes into more detail about this if you're interested... it's amazing what your mind will come up with to keep entertained.

I only had involuntary vertical eye movements during the time of locked-in syndrome but I could definitely see a majority of that time.. I just couldn't move my eyes.

How was the experience of falling sleep and waking up like?

I didn't really fall asleep or wake up. It was more like I just passed out at time... usually from extreme tachycardia or pain.

That’s an excellent write-up in the Guardian- thanks for sharing your story with us!

You're welcome and thank you for reading!

Heck I have full mobility and still talk to myself in two voices. Isolation is a bitch. Glad you broke out of it and are doing better.

I guess everyone is getting a little taste of what my life was like thanks to COVID-19. Thanks for the support!

At what point did you realize that you were "locked in"? Does the realization come suddenly? Had you heard about locked in syndrome before it happened to you?

I remember very specifically as I was losing all of my bodily functions, I noticed in the hospital that no one was interacting with me anymore. When a nurse would come in change and IV, they would typically say, "Hello Mr. Haendel, I am here to change your IV". They stopped for approximately 10 days and this is when I had an "oh shit" moment and thought to myself, ' no one realizes that I am cognitively in tact'. Unfortunately I overheard everything.. one of the most painful was, "don't worry, he can't hear you. He's brain dead anyways"

The only thing I knew about locked-in syndrome before I got sick was from an episode of House MD with Mos Def where he was actually virtually locked-in. I didn't have this epiphany until after I came out of it though.

How accurate is that house episode? I had never head about being “locked-in” previous to watching that episode and it was extremely intriguing.

It wasn't very accurate... but entertaining. First of all, the guy was never locked-in. He was virtually locked-in at best and there were many other things that were off. I actually made a reddit post under House MD about this. not sure if I can find it right now but feel free to search my profile.

https://www.reddit.com/r/housemd/comments/hyc1xq/_/

I think this is it.

Good hunting! lol thanks!

That is horrifying. I'm so glad for you that you were able to recover from this but I'm disturbed to think how many people are living this out right now who may never recover.

I can imagine that once the initial horror wore off and you accepted your situation that boredom becomes overwhelming.

The scary thing is recent research shows 1 in 5 comatose patients might actually be locked-in. Hopefully they can get fMRIs more readily available to distinguish between someone who is vegetative and someone who is locked-in.

This was awful to hear, I'm so sorry someone said that near you whilst you were unable to respond.

Could I ask. Were you ever worried about people hurting you/doing things, say tests, treatments when you were unable to respond and/or consent? I assume you weren't on life support and they couldn't essentialy 'switch you off' (Apologies for being blunt) as it were? I feel like it would be terrifying for anyone to come near you if you can communicate in any way?

I'm so glad to hear about your amazing recovery so far and wish you more good things to come!

Yes I was worried but what could I do? You are at the mercy of your medical team and your healthcare proxy.

Did that person who said “don’t worry he’s brain dead” get some kind of infraction?

No idea honestly I do not blame her. I really did appear to be a vegetable but I talk with myself in my head I was like if I can comprehend what you’re saying how could I be brain dead. I did not realize true brain death is death. It is used as a adjective to describe someone in that state I guess

Did you hear things people around you said assuming you couldn’t hear them/weren’t comprehending that they’d never have said otherwise?

Yes and yes unfortunately :(

If you are enjoying my story please feel free to donate even $1 or share my story. Everything helps and your support is greatly appreciated either way! https://gofund.me/404d90e9

Hey man, please don’t mind the guy below calling you out. I’ve had loved ones battle with addiction and that never precludes you from deserving sympathy or support. As the downvotes indicate, the vast majority of people feel that way and are just happy you’re still around.

No worries I got tough skin I appreciate it and everything you said is absolutely correct.

Hi, I'm a nurse who has worked with many comatose patients throughout my career.

What are your thoughts on putting a prolonged unresponsive family member on hospice? I had many families who's family members are on numerous invasive life-sustaining efforts constantly arguing "they're still in there" despite imaging and diagnostics showing no brain activity. Often times this is not the case, but you have lived the exception.

Do you think they are sending their loved ones to die?

This is a very complex question and something I think of often. I don't know if I have the answers because ever case is so different, especially mine. I do know that family members frequently see what they want to say but there are cases where they are right. I do believe that hope and love will help no matter what but there is a time that it is necessary to move to hospice care. If you make it more than 6 months, then great!

Thank you for the work you do! Great question!!!

Don't mean to overburden the questions but I'm really ingested in the experience. Was there a friend or family member (or Healthcare provider) who's support was beyond what you would have expected? In what form was that support, why was it meaningful?

No worries, I am happy to share. I had a combination of everything you mentioned from care givers that would not speak to me to care givers that would sing to me. My dad went to extreme lengths and definitely burnt himself out in his effort to care for me both before and during hospice. In my recovery since I cam out of locked-in syndrome, the support has been overwhelming.

In terms up meaningful support, people who continued to talk to me as if I was actually there was extremely helpful. They would talk to me about the news, about their days and just "normal stuff". They also kept saying they knew I was in there, which I was!

Keep in mind, I was transferred numerous times and supports changed frequently but the most meaningful were the people who engaged with me.

This is a blessing compared to the other story on reddit where the guy was locked in but they thought he was braindead so they played nothing but barney for 12 years.

He came out of it with trauma from Barney and kind of bitter at his parents for hearing things he should have never heard

Now that you mention it, I kind of recall hearing about this. The only form of PTSD I have is from Law and Order SVU and Supernatural. Don't get me wrong, I loved SVU before all this but it was ALWAY on the TV... I'll never ever watch it again.

That's amazing to hear.

Do you think it would be a good idea to leave the radio on for locked-in patients? You've mentioned care givers singing to you. Did music generally play a big role in the time you couldn't communicate?

It would have been nice to have some music but make sure it's not the same station all the time! And also, make sure it's calm and soothing and not too loud because the patient might have a pounding headache! Music has always been a big part of my life and the hospital spa channel really did it for the first four hours but as we got into month two, I was freaking out and would have appreciated some variety!

Thank you so much for sharing! I can imagine how excruciating spa muzak can become when you can't escape it. If anyone I know ever finds themselves in a comparable situation, I'll make sure to supply them with unlimited mix tapes and audio books.

I'm really happy that you made it out and can again be your own DJ. It isn't every day that you get to communicate with a genuine miracle, so thank you again for sharing your story with us.

Thank you so much! I hope you never have to supply anyone with mixed taped under these circumstances but you're a good one!

Please follow along with my recovery on my YouTube Channel and share my GoFundMe to raise support for future progress!

How are you feeling today?

Phenomenal and truly blessed to be alive. I am sitting in my own apartment, in my own clothes with my PCA who is typing for me so I can keep up with responses. I finally feel like I have some independence but still working on literally everything every single day.

I'm happy to hear it Boston. I look forward to seeing your updates, when you post them. Cheers my friend. Onward and upward! Many blessings from your Canadian friend!

Thanks so much for your positivity and support all the way from Canada. Definitely follow me on YouTube because it's going to be an eventful year!

Mind if I ask what your plans are for the future?

First things first, I would like to be able to walk and perform all my daily living tasks by myself. Aside from that, I would like to do some public speaking and be a voice for the voiceless.

So in law school we had a convicted murderer who spent 20+ years in prison come in and talk to us. Obviously I don't want to compare you two at all, but you do share one thing which is you both have super unique experiences compared to the rest of the world. Yours more so than his. It was a really cool learning experience for us and it really humanized people on "the other side" of the legal process. I bet talking to med students would likewise give them a unique viewpoint. And maybe you could convince even just one person to have better bedside manners when dealing with comatose patients!

I totally agree with you. I am looking forward to doing this in the future. I have spoken to a group of graduate speech pathology students at MGH. It was really fun for me to give a presentation about learning to speak again, obviously because my speech has improved enough to give the presentation! These are some of the highlights from the presentation!

Not to sound like a broken record, but please share my story and support my cause!

I wish you all the luck! After all the craziness of covid is over, I'd love to see you on stage in person!

What are you working on right now right now? What is the next ability you'd like to gain/regain?

Aside from wiping my ass (lol)... right now I am working on self-feeding and getting back on my feet (literally)... although my feet are such an ongoing disaster. When I was in hospice my medical care revolved around comfort only and it really messed up my body and it's take a long time and many many procedures to try to correct. Getting there though! Check out these videos, they are pretty funny (and a disgusting).

https://youtu.be/XbWcM3jBlQM

https://youtu.be/tHIjk_NwL14

https://youtu.be/QMRgQBwcX30

It’s going to be a grind but you have a ton of internet strangers cheering for your success!

Thank you stranger, you are the best!

It would be great if you could eventually manage to put your experience into some visual medium. If people can relate more to the experience people with your former condition have, it could be good for future treatment.

Check out my YouTube Channel, that's my medium!

I am SO excited to see this AMA! When I read one you did previously, I was only a few months sober from alcohol. For some reason, your experience and story made a huge impact on me, from an addiction standpoint.

How are things going in that aspect of your recovery? Have you found it easier to abstain from substances or struggled more as a result? Do you have anything you'd like to say to those who are currently struggling with addiction and want to quit?

Wow! So happy you are here. The first AMA I did, I was still in long term care, barely able to move a finger. I am really happy to hear my story has impacted you from an addiction standpoint. That's one of my mail goals, to help others realize they do not need these substances we seek.

I do not crave or want anything that's harmful to my body.. I mean look at what it's cost me. I am lucky to be alive and have a brain that works, I do not want to take a change that anything will harm it further. My advice to other people struggling with addition out there is to slow down and reevaluate what's really important in your life because it's not really as bad as you think. After you've gone through what I've gone through, I realized that and I want to prevent others from fucking up the way I fucked up.

Please never hesitate to reach out, I truly mean that!

I'm late to the party, but my question is, are there volunteer organizations where I could go and keep people with LIS/comas company? Like reading them current news, books, etc. Just so they know they aren't alone?

Reading your comments about how people treated you when they were unsure of whether you were "in there" and how bored you were not knowing current events makes me wish I could help out.

You're fucking awesome and this is exactly the type of attitude I'm trying to inspire! I am blown away by this response.

During the pandemic, there aren't really any options. I know for a fact that at MGH and other Boston hospitals, they do allow volunteers to come in if family allows it or if the patient is able to consent.

In 2019 I sounded like this and not everyone could understand me. I had very limited mobility and I was trying to organize several thoughts and to-do lists. One of my nurses called the volunteer office and an awesome volunteer came in and spent about an hour with me. He patiently worked with me to understand what I was trying to convey and he took care of my needs. I will always remember how moved I was that a complete stranger would show so much compassion towards me and it makes a HUGE difference. Now that I think about it, I'm sure I can locate this guy because he's probably in my medical chart and I am going to reach out to him.

Will you eventually make a full recovery?

That's the expectation... hoping to run the 2025 Boston Marathon but I need to walk first.

When you do the run in 2025 you should contact all of the news organizations in Boston to let them* know about your recovery and your journey through (what I think is) hell. It can bring more awareness to this terrible illness - plus you'll have the ladies just lining up for dates. (jk on the last bit... but maybe? hahaha) But seriously, I want to point at the TV in 4 years and say "HEY I REMEMBER THAT GUY!" :)

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edit: a word

Thanks so much! I will be assured to alert the local and national media. Definitely planning on running for a traumatic brain injury or addiction cause in the future (if our planet makes it that long)!!

Would you be so kind to share this link

https://www.gofundme.com/f/jacob-haendels-recovery-fund?utm_source=customer&utm_medium=copy_link&utm_campaign=p_cf+share-flow-1

Thank you so much for your support 😊❤️

How did the doctors know you had locked in syndrome and weren’t just completely gone?

Truly incredible and I imagine you must have a very unique perspective on life and happiness. Very happy for you!!

They did not know until I started to communicate. When I could communicate verbally, I was able to describe my experience and they then realized I had been locked-in.

Didn’t they do an EEG and still see brain activity?

Yes they did and it showed slowed theta. There were some brain waves but The assumption was I was disconnected from reality or vegetative

My sister is currently in this state. We have been told she has “slow” EEG activity but there’s no evidence of disrupted brain activity. We have no idea if she’s “in there” or not

Damn how can I help? Are you able to visit what are your instincts telling you when you speak to her

That must have been a living hell for you, I can't even imagine. Major respect.

Was the diagnosis accurate? If so, do your doctors have an explanation for how you pulled back from a disease with terminal progression, or is a relapse expected?

Living hell is accurate. Thanks for the respect.

The diagnosis was accurate, it's called toxic acute progressive leukoencephalopathy. I am the only documented case of recovery from Stage 4 of this disease and it baffled everyone. According to my brain scans, none of my progress should be possible but I am no longer terminal and I am basically like a newborn who has to relearn how to do everything. A relapse is not expected!

Here's a link to my brain scans if you're interested.

You're amazing dude!!

Thanks homie!

Do you know what caused the disease?

Some kind of toxic cutting agent.

Heroin? I'm a neurology resident and we see this time to time in drug users, typically heroin. Often refer to it as "chasing the dragon" syndrome.

Exactly

Jesus. Heroin can do this? That's insane.

Really any drug with the bad cutting agent when you think about it but we are 99.9% sure it was heron because that was my drug of choice that inhaled

Did you get an obscene medical bill, especially if in the US?

You can't even imagine.. hence the GoFundMe. Any support helps!

The fact that anyone has to set up a gofundme for survival makes my blood boil like nothing else. 30% of gofundmes are for medical bills now. This is a country made of layers upon layers of vampires. Fuck yes I’ll donate.

Thank you my friend... Times are tough right now for everybody putting aside my ordeal.

How have you contended with facing your death? How did you deal with the inevitable we all must face?

I said, "death, not today. I'm too young and there is way too much I want to do. Thank you, baaaiiii". Death was procrastinating that day... so here I am.

I was not scared of dying but I was not ready... it's such an existential question and there were certainly some times where I wished I would die, but when I realized that wasn't happening, I didn't even think about dying, I thought about recovering.

That sounds terrifying. Were you scared? How were your anxiety levels? If feels like a living nightmare just imagining it. How do you get locked in syndrome?

I am so happy that you are okay!

Constant panic attack... my anxiety was off the charts all the time. I am actually surprised my heart didn't blow out considering I was in triple tachycardia.

Locked-in syndrome can happen from a variety of brain injuries but I got it from a very rare disease called "Chasing the Dragon Syndrome". Unfortunately, I used to freebase heroin off tinfoil on a daily basis. Drugs are bad mkay!!

https://www.jhaendelrecovery.com/post/if-i-were-you-i-d-stay-away-from-opiates-and-here-s-why

Jesus. I am so happy that your nightmare is over my brother!

Thank you, me too! Rocky sailing from here on out but in comparison, quite smooth.

How did you communicate non verbally? And sorry if this is a sore spot, but what kept you pushing forward and not give up on life? It’s wonderful things have turned around so much for you. I hope you are getting to enjoy life again. :)

I developed a yes/no system initially. Blinking my eyes for "no" and sticking out my tongue for "yes". From there I progressed to using something called AEIOU board and from there a non-verbal communication board called the MEGABEE.

Honestly, I was tired of being stuck in my mind and body. I was so frustrated that I had to break out... I literally couldn't take it and I realized I was not dying. I overheard every day for 8 months that I would die... and guess what? I didn't... so I just thought to myself, "I gotta get out of this".

My wife is a Speech Language Pathologist and she is wondering if you're working with an SLP for fluency or voice therapy and/or overall verbal expression. If you could share some of what they're having you do she would love to read that. She has actually worked with a patient who had locked in syndrome.

I am coming out with a video of my LSVT therapy very soon. I am in the editing process. There is lots of relaxation exercises as well as yawn-sighs, focus on tone and the position on where your voice is in your mouth (front vs back). I also do a lot with phonation and range. Please share this with your wife. I have been doing some speech pathology graduate course Q&A over Zoom.

What has been your greatest challenge since getting back into your apartment last month?

Thanks for letting us know that you appreciated the caregivers who talked to you, etc. I’ll be sure to talk to my patients regardless of their ability to communicate back. Best of luck with your recovery, we are all rooting for you!

That is amazing to hear and all your patients will greatly appreciate it!

The biggest challenge since moving home has been.... everything! There are surprises (definitely check out the linked video for a laugh) around every corner it seems. From setting up an accessible apartment, to hiring help, obtaining proper medical supplies, getting to and from appointments, finding funding to support myself and trying to keep up in a fast-paced world and doing all of my therapy homework has been exhausting and difficult but I am determined!

What things/ experiences/ events are you looking forward to right now? I'm glad you're on the road to recovery. What's your long term prognosis with this disease? Best wishes for happiness every day

Right now, I am looking forward to walking. I would say I am looking forward to wiping my own ass but it terrifies me. I have a horrified phobia of all bodily fluids. Ew! Fortunately and unfortunately, potty training is in my near future. Sorry for the graphic comment.

Long term prognosis it to make a near full recovery.

In the span between when you were locked-in, and when they realized you were still cognitively there, what was your family like when they visited?

My family was always and continues to be extremely supportive and I am very lucky to have so much love and support.

I've never had the chance to ask someone with locked-in syndrome this question, but if you've ever seen the film 'The Diving Bell and The Butterfly' (it's based on the memoir of the same name by Jean-Dominique Bauby, the former editor of Elle magazine in France), I was curious: how accurate is the film's portrayal of the condition, more so from the emotional and psychological point of view?

It's so different for every person but the book was a very accurate portrayal in my opinion

You probably won't see this comment because there are so many, but I originally came across your story about six months back right after I had taken some LSD and was waiting for it to kick in. The resulting trip helped me stop abusing opioids for good after reading about what you went through. It wasn't a fun trip, but it definitely changed my life for the better.

Do your doctors/physical therapists expect you to regain fine motor skills? I've watched a few of your physical therapy videos, and it definitely seems like you're improving.

Good luck in the future, I hope you continue to get better.

This comment happen to come in right as I refreshed my news sweet and I am so happy it did. That is fucking amazing and exactly why I am telling my story. Stopping opiates is so difficult congratulations man. Sorry for the bad trip.

It seems like you're an anomaly. Are they doing a case study on you? Trying to figure out why you were able to break out of it?

I am an anomaly! There will be case studies once my ongoing recovery has advanced more. In other words, there are bigger fish to fry right now.

I would have thought there would be brain scans or some type of technology to tell if a person is locked in and non-responsive vs. brain dead. Isn't there a way they can technically tell the difference? It sounds like there isn't.

Also...I would think someone going through what you did would have some type of PTSD. Do they give you support for the emotional trauma, not just physical? Or do you not experience any lasting emotional side effects?

There are EEGs that I had but they are not definitive. They just show how much activity is going on. And there will always be some activity. If there is no activity, you are dead. There are things called fMRIs but they are not available everywhere. To my knowledge, I never had one. But the brain is so unknown and so complex that it's really not as simply as scan.

In terms of PTSD, I actually suffer from something called post-traumatic growth syndrome. Honestly, I don't have any emotional side effects that I am aware of, another mystery!

This might sound weird but did you ever feel like what you were expirencing wasn't that bad compared to someone else's suffering?

I had a ceisure 2 and half years ago that shut down all my cognitive functions and prevented me from properly using limbs. When I got into hospital everyone I met kinda thought what they had wasnt as bad as what someone else was going through.

Like we all hated it and thought it was really shit and stupid and fealt useless. Whenever I spoke to someone who was paralysed permanently from a fractured spine or could barely speak after a car accident or terminal with brain cancer I'd always feel really scummy for complaining because it seemed like what they were going through was so much worse than what I was dealing with.

But half of everyone said they fealt the same about me and others in hospital. It was everyone that thought this way but still way more than I expected

Sorry kind of a long comment but I was just wondering if you fealt anything similar. I'm really glad your doing well by the way

I totally see what you're saying. There were many other patients who could walk but did not know where they were walking to or what they were doing. There were even some patients who used their shit to make paintings... I am thankful to have had my brain over my body and my heart goes out to people who are cognitively broken.

Back when I was still nonverbal, my cognitive abilities were called "a gift and a curse" by a psychologist. I could fully comprehend everything that was happening at that point as well as the grim reality that it was unlikely I would recover further.

Everything is relative to your own experience. If you've found a way to cope with your own reality, it's easy to think someone else's is unimaginable... because you haven't experienced it yourself.

As an occupational therapist, I’m curious if you worked with any and what sort of interventions they did?

Oh boy, the list of therapist is LONG! Everything from regular OT to neurological OT to neurological Saebo therapy and OT ATEC (adaptive technology). I have some incredible OTs and all of them have been invaluable in my recovery.

Here's a funny OT video!

Is there a medical explanation as to why you where able to overcome a terminal disease and recover from a seemingly point of no return?

Not to my knowledge. I am a total anomaly!

In another comment you mentioned people initially talking as if you weren't conscious -- what was the process or how did your doctors figure out that you were aware and locked in?

It wasn't until I was able to start blinking my eyes that any doctors realized I might actually be there.

As someone with anxiety disorder, I often try to calm myself down while freaking out and struggle gathering my thoughts. I spend countless hours a day in my own head/lost in thought while going through a stressful period. What you went through is a million times worse than something I've ever experienced. While locked-in, did you find ways to calm yourself down while having distressing thoughts? Would you care sharing them?

At times, I could talk to myself in a way to somewhat relax from a total state of panic but I was always uncomfortable or freaking out, lots of ups and downs like anything else I suppose. What I do now is take deep breaths and tell myself positive affirmations, it really does make a difference. Good luck!

Do you think that facial recognition technology could be used for monitoring comatose patients to map possible microexpressions or other attempts to communicate? That just occurred to me as I was reading your responses.

interesting concept and I think we should follow up with Elon Musk.. kinda serious though... it's a good idea.

Does anyone know if there is a way to make a live video right now? Jacob is attempting to feed himself some salad and wants to share the entertainment.

Welcome back. I bet it was emotional seeing your family realize you were actually in there. What was it like for you, and what was the first conversation like where they knew for a Fact you were in there?

When we made eye contact and I blinked. It was sensational... sounds funny but the connection was there.

Being the beginner at everything for the second time in your life must’ve been a massive learning experience. What is your biggest most profound takeaway of this unique challenge you had to face?

I am still very much a beginner with everything. I am just now relearning to hold eating utensils and feed myself and hopefully I will be able to walk soon again. Here's another example.

The biggest takeaway is don't take things for granted... it might sound cliche, but I truly appreciate all the small things. And never give up! seriously!

How did you react when you learned that you were going to become locked in and die from it?

And how was the moment when you realized you weren't locked in and you could communicate it with someone?

Terrible and wonderful lol. In all seriousness, it was devastating and beyond horrible not being able to tell my loved ones that it was okay that I was leaving and that I wanted them to be okay.

Coming out of it was scary but exciting. Scary because I was worried that I would stay non-verbal and paralyzed/quadriplegic forever. But as things continued to improve I had a greater appreciation for every aspect of life and was excited to progress.

Any tips we should bear in mind, in case one of our friends or family members once comes in a situation where we don't know if they are locked in or not? My dad was in a coma before he died, and nobody knew if he was aware of his surroundings or not.

What should we do in those cases? Like, leave a TV or radio on all day long within the field of view, or would that be overload?

hard to say, I would definitely switch it up. Be on the lookout for microexpressions or any minor changes. Just try to imagine what you would want if you were stuck in a room all day every day! You would not want the same things day in and day out. Also, be aware of temperature. I don't have all the answers but from my experience, these things were important.

Really looking for all the support I can get, even $1 would help! Check out my website or my GoFundMe. Thank you reddit and r/IAMA!

Did you experience boredom while being locked in? How did you cope with that?

Was I bored? absolutely. I mostly just engaged with myself in self-talk. Coping is an interesting word to use here because I didn't have a choice. There wasn't anything to do except get lost in my own thoughts. Yippee!

Follow me on Facebook for more progress updates!!! https://www.facebook.com/Jhaendelrecovery

1) thank you for doing this. Your story is an incredible affirmation of life and I’m glad you’re here with us to share it.

2) Have you tried any psychedelics (LSD, psilocybin)? I’m curious what your experience of them would be like and what the differences/similarities would be to your previous state of consciousness.

Before I got sick, I tried every psychedelic known to man but I do not even think about that stuff anymore, I mean look where it got me...

What were your initial symptoms that lead to diagnosis,?

Change in voice and coordination.

What did you do before all of this happened?

Chef... check out my story and my website for what my life was like.

I think I’ve read about your case, but I’m not sure. Did people around you or in charge of taking care of you have no idea at all that you were conscious?

Also, would you mind telling me everything you can about your particular case from a medical perspective? Like what have your doctors told you about it all.

Glad you’re with us and “unlocked”!!!

My particular case from a medical perspective is over 10TB of files. I can tell you that I am an anomaly, I can tell you that from a neurological and radiological perspective, I do not make sense. I am a complex care case and I am so happy to be here and unlocked.

I you want to know more about some of the procedures I have had, please reference my YouTube channel as I have documented many of them.

I'd like to ask a question that might be a little more fun to answer: what tv shows or movies have you been watching since you've recovered? Any books or games?

All the games I play nowadays are therapeutic in nature, I still don't have fine motor control. I am looking forward to a real game of Scrabble though.

I started rewatching Ballers on HBO. I introduced my dad to Ozark but the highlight was the mini-series The Undoing on HBO. I highly recommend it. I started it in the hospital and finished it out! Honestly I don't really have that much time for TV. I am hyper focused on my recovery.

In terms of reading, I read more articles than books.

How much do you hate Barney?

N/A

Who do you think would win in a fight between 1 horse-sized duck and 100 duck-sized horses?

I have no idea! I have brain damage, remember? Eager to know the answer though.