As a nurse I am always careful to be respectful with patients in a “coma”- explaining what I am doing and why, talking about my day, anything really just to cover the silence and hopefully provide some comfort. Did you have any experiences with healthcare providers (good and bad) that you’d like to share in hopes of making us better practitioners?

OMG that is so good to hear! I would say I had a 5050 split of people talking and people in complete silence. Nurses that spoke to me income soothing tones really helped. Providers that spoke to me as if I was there it was like the best days of my life in that situation.

Some of the bad things were don’t worry he’s brain dead anyway he can’t hear you. There should never be a reason to this. Some doctors or hospice nurses would be talking to my family right now for me as if I was not even there saying how I have to hours to live I feel like these discussions should take place outside of the patients room.

There were particularly A lot of commenting about how I was a druggie and how I did not deserve the care. I feel like leaving your personal opinions out of your work is important.

I went through something called neurological storming. This really should have killed me if you ever have a patient gone through that it is important to keep them calm at all costs. Any small bit of anxiety could set me off into a fatal storming event

People talking shit when you’re in a coma:

You: BITCH IM BACK OUT MY COMA

😂😂❤️❤️

I used to work on a TBI floor and seeing a patient neuro storm is one of the scariest things I have seen as a nurse, and I have seen a lot. I am so sorry you had to go through that but glad you made it through!

Oh my god they are terrifying I don’t know how are you guys even deal with it mine went on for 6 to 8 months

Literally all your nervous systems were screaming...we are not ok, none if this is ok! While you were probably thinking to yourself “yea, no shit”. Your recovery is truly amazing, can not wait to read your book one day.

Exactly thank you so much follow me so I can stay in touch

Hi. Thanks for sharing.

My aunt was recently hospitalised and diagnosed with Guillain-Barré syndrome and is in hospital completely paralysed bar her eyes. What are some things we as a family can do to make her as comfortable as possible and help her communicate during this time?

This is my opinion from my personal experience:

I believe that it is very important to talk to your aunt as if she is fully aware regardless of what everyone may think.

Calm and soothing tones helped me a lot!

Every day see if they can send down by blinking or moving a part of their body and trying to establish yes and no schism

Please PM me for more advice

I would want the tv or radio on to not be alone in head constantly.

But wonder if you had a massive headache and could not tell them to turn it off. Also I am going to share something with you that I wrote it will be in my next reply

Glad you pulled through! I imagine it was pretty terrifying and extremely uncomfortable. How did you stay sane?

There are many different adjectives to describe how terrifying and petrifying this was. Extremely scary and lonely and depressing. I would literally count numbers in my head to pass time. I had a internal monologue constantly going on with myself having conversations with those around me as if they could hear me.

It was very hard and I’m not sure I actually stayed sane during this time but as I came out I regained my Sanity

Would you say that tv or radio should be played for people who are in a coma or pseudo coma just in case they can hear? I’ve often wondered this.

Honestly when I was at Massachusetts General Hospital in the ICU. We pretty much kept the hospital spa channel on 24 seven. I would recommend this but after a few months switch it up. It got old. It probably depends on the person and exactly how they are feeling so it’s hard to say definitely something soothing though

Omg it must have been super boring. I am the kind of person that cannot stand 30 minutes of nothing. Waiting for someone for an hour would means me breathing fire at the person. I cannot imagine having to be concious but not even able to turn on the radio.

Glad you are ok now.

So I am the type of person that could not sit still for 30 seconds LOL just awful unimaginable you can’t even comprehend so bad!

Seriously me too thank you so much

Introflective period of locked in and nonverbal

Even though there has been much physical and emotional pain,sadness,hardships,disappointments, and things to be anxious about since I have been in recovery. I’ve been in a more appreciative overall happy mood. There are many things I complain about and would drive anyone crazy in my situation but I’m talking about depression. I am not sure exactly what it is but maybe it’s the fact I am so grateful to be alive I did not carry the same depression I used to. There’s seem to have been a shift in my brain with overall mood. Before my injury even though there were many problems and much sadness I really had a privileged and wonderful life. It’s really interesting to think how I was able bodied, independent, and financially sound and then compare things to my current situation, my mental health is much improved. I was discussing this with Dr. Devitta a physiologist today and he said in the all of his years practicing he has never heard of anything like this. He says that this is really sophisticated way of thinking and that it’s actually changed my perspective is really great . I have been thinking about this for a while and wondering why I was trying to gather the right words to explain what I think is going on. I Believe spending about one and a-half years being locked in then virtually locked in and finally nonverbal, I had so much time with personal introspective thought. I was speaking with myself I within my own mind with two voices both my own about everything basically all day long. When you think about this it more personal conversation and working out internal issues than most do in a lifetime. The ultimate therapeutic retreat. This is a self help workshop that virtually no one has or will go through. Luckily I have came out the other side better. I really thought about and discussed absolutely everything with myself. It’s not even like I fully worked out all my life problems but more like I have come to terms with everything that saddened me which in turn caused me to self medicate.

The development of the Posttraumatic Growth Inventory, an instrument for assessing positive outcomes reported by persons who have experienced traumatic events, is described. This 21-item scale includes factors of New Possibilities, Relating to Others, Personal Strength, Spiritual Change, and Appreciation of Life.

Thank you for sharing this, your story is incredibly interesting. I've never heard of this article but I think I have experienced similar feelings to what you described, after being attacked and sexually assaulted by a stranger at night (9 years ago).

It was really strange because I happened to be going through an extreme period of depression during the weeks before the attack occurred. I had been contemplating suicide and had gone deep into planning .etc.. I was also drinking to black out almost every night. I remember I had written a suicide note the morning of the date I was attacked.

In the moment that the assault was occurring, I remember very vividly as I lay under the man and he began choking me with his hands. with all these thoughts spinning in my head. I had this feeling of utter annoyance with myself, like I was so angry for wanting to kill myself over petty worldly things like money, a job, or even simply the human feelings of sadness and loneliness. How petty for taking bad days for granted, now my life was going to be over at the hands of this person, I would live a thousand more bad days to not end like this. I thought of my mom and a stupid fight we had the day before, and I began replaying all of these scenarios in my life where I took everything for granted. It was like a slow movie that played out in the span of a minute. I literally felt like I was detaching from the human-ness of these bitter feelings and my old self was falling away.

The story itself is much more than that and fortunately I did survive. But the whole incident created this massive shift in my entire existence and I've never quite thought the same since. I never felt like it traumatized me but more so helped me evolve, if that makes sense. I've never found a way to quite explain this shift but finding this comment and article has really helped me understand a bit more. I appreciate your forthcomingness and sharing your experience which has helped me share mine too

Thoughts of suicide and actually taking my own life

Well I was on hospice I definitely had times of dark thoughts and wanting to die. Let’s face it I was locked in and couldn’t even control my eye gaze so how would I take my own life? Sadly or luckily I couldn’t even take my own life. I rarely thought about this but when I imagined being trapped in my own body for eternity it crossed my my mind. I thought to myself “fucking shit! How pathetically sad and scary is this!” As I have written there was a shift in my mood and outlook when I was able to nonverbally communicate with my eyes and my tongue in July 2018. Then in Mid October 2018 even though it was only three months later it had felt like lifetime. In comparison to where I was in my recovery my condition was night and day, meaning I was so much better. I was still storming on occasion, severely contracted, excruciating pain, nonverbal, and virtually alone. I was able to communicate with the Megabee at this time, I didn’t know the status of any of my family or friends, nor did they know my status or my location. My wife was becoming increasingly more distant and difficult. I felt alone and I’m horrible pain. I thought and pictured the possibility of a disturbing future, having no movement and communicating with the Megabee in a shitty nursing home a all alone. This thought/vision scared the hell out of me. I remembered a number of a old friend/connection for heroin. I knew that if I got in contact with him he would agree to give me my request. I figured getting a very large amount to be dissolved in water and injected into my feeding tube should be enough to take me out. Since I was nonverbal and I was completely dependent on others, I would have to find a accomplice to help me end my life. My wife was out of the question, so I would end up asking a NA. I had her pick up the Megabee I opened with “I have to ask you something, please don’t freak out or tell anyone!” She replied “uh, okay, what is it?” I explained my plan it was obviously she was upset and surprised by my request. She tried calm me down by saying positive things. I was clearly having a crisis if I was this desperate to ask someone to do this for me. At that moment I would have gone through with it. It’s interesting looking at where I was from hospice to that moment and things were improved by ten fold. Humans always want to be better. She ended up telling her supervisor and I was put on suicide watch. What did I really expect? Suicide watch for me seemed silly it’s not like I had any visitors or I could do anything to harm myself without assistance. Within the first ten minutes of my watch I knew this was not a option, not that I felt better. It took about a week for me to feel somewhat better. Things started to really improve when I started to make sounds and some movements in December 2018

You are fucking incredible

For sharing that with the world or overcoming everything?

Both. Everything. I’m completely overwhelmed with emotion

😐❤️

Oh my God wow thank you for sharing this horrific story with me! I would first half like to say I am so sorry this happened to you I am going to share something I wrote when I was contemplating suicide myself. with you

While you were in LIS have you heard (negative) comments from people you know about you, which made you eliminate them from your life during/post recovery?

OMG everything on both sides of the spectrum

I heard he is a fucking drug addict and doesn’t deserve the bed

To

Someone who would sing opera to me

I smoked heroin for 5 years of my life until about 4 months ago and this made me so glad I quit. I cant count the amount of times i was diagnosed with pneumonia. Thank you for sharing.

What were your first signs that this was happening and how did you feel when the doctors realized you were "in there"?

Congratulations stat clean trust me nothing is worth potentially going to through! My first symptoms or very subtle slight voice variation and slight loss of balance. I dealt with it for over a month before going to the emergency room

Do you think it could have been the foil? I know in my country the needle exchanges and harm reduction centres give out foil especially made to smoke off because store bought stuff can be toxic if you get a certain type (Ireland by the way).

With 100% certainty it was not the tinfoil they are not sure what exactly but most likely a pesticide. Thank you for commenting all the way from Ireland 🇮🇪

I can't imagine the idea of being a passive observer to what's going on around. How did you manage to stay sane in this situation?

There were definitely days where I was like I really hope I do die soon because this is even worse then torture. I was also in extreme pain and having medical crises all the time which actually took away from the thought of being trapped. I talk to myself all the time and others around me as if they could hear me. I had visions of surviving this and becoming Able bodied again and being on the beach or having a picnic.

It really was just hell

Being on the beach and having a picnic are things that some of us really take for granted, and I find it interesting that these came to mind as, 'when I get out of here, I'm gonna...". What other, eh, rewards were you looking forward to when visualizing getting over this?

I had one constant image on almost like a video playing in my mind it is so clear I can’t see it right now. I was on the beach in Chatham Massachusetts Cape Cod right next to the Chatham bars Inn. My wife and I had some sort of French lunch and a bottle of wine there was a slight overcast but it was a perfect day I was able bodied. My hands were normal everything was normal this was like five years in the future and I was fully healed

Around 9 years ago when I was a young doctor studying anesthesia, we had to do night shifts once a week inside a Trauma ICU. One night there was a new patient who crashed his motorcycle, he had tracheostomy, Ilizarov apparatus on all limbs and had a brain surgery to relief pressure due to bleeding. It was hard to take care of him because of all the things around him, but somehow he made a noise and he directed my attention to his right arm that was in a weird position. I just placed a pillow under his arm and left.

2 years later as I was walking in a corridor some random guy stopped me and asked: hey, do you remember me? I was in a hurry and obviously said no.

He smiled and said that he was the guy on ward number 1 with the tracheostomy and ilizarov. I was like “wow you are walking again” and he just replied as he walked away: “thanks for that day!”

Such a small thing was really important to that person and I didn’t even realized, that made me put more effort on those “small” things such as smiling and treating others with respect. There’s no money that can buy those kind of things. Even though I don’t remember his name, I will remember him forever.

Congratulations on your recovery!

Ps. Sorry for the bad English. It’s not my native language.

Thank you so much for sharing that with me... that is a awesome story and your English is perfect where are you from what is your native language. I would be honored if you continued to follow my story on YouTube. What kind of doctor are you?

It’s probably impossible to be put into words- but what did it feel like when the doctors realized you were “in there”?

This all started when they realized a minor movement in my right wrist. They originally thought that it was involuntary but they said if you can hear me do that again. I got extremely excited but I felt as if I had no control. Luckily I heard him say oh my god he’s doing it. Shortly there after I managed to have one how do you blink again. Again they thought this was involuntary. They really could not believe that with the catastrophic brain damage that I had that I could be cognitively intact. It started with blink if you are this or that types of questions

Do you know after how long they realized? I imagine having a sense of time to be difficult

This was early July 2018 Two months after hospice

They were in disbelief

That’s great man I’m glad you recovered.

Recovering is the keyword I have a long road to go

I fed myself my first meal on Friday https://youtu.be/ilrHteCzj9g

If you’re interested check out my other videos it will show you were im at in my recovery

Wow, a salad is challenging to eat! You didn’t want to start with something easier to get on the fork? Nice work!

I am all about pushing myself to the limits LOL that sounds so funny when we are talking about eating a salad

The final cost of your medical care must have been enormous. How did you handle that expense?

Seriously. This is a legit question. Because, my nightmare isn’t suffering through the illness, it’s being handed a bill after recovery that ruins me and my family financially.

Well I am lucky that I had worked for 10 years because in America that makes you eligible for social security disability. This means the money I have paid for social security all but $17 a month goes to the hospital. I am also lucky I am live in Massachusetts so whatever Medicare does not cover Medicaid or mass health does. I am beyond broke and I will be in debt but I am still fortunate that I will be not be in debt for the rest of my life.

The bills are astronomical I am embarrassed to say what they are.

Info: Here's OP's last AMA https://old.reddit.com/r/IAmA/comments/fzchgc/toxic_acute_progressive_leukoencephalopathy_check/

Thank you sir

Thank you for doing this AMA! I'm a graduate student speech pathologist and I would love to hear more about your experience with speech therapy.

What helped? When during your recovery did you begin to see a speech pathologist? Is there anything you wish your speech therapist had done differently? How can speech therapists advocate for patients with LIS?

Initially when I was coming out of locked in and then a established a yes and no system The hardest part was getting the staff trained by the speech pathology department if you look at my YouTube channel check out the AEIOU board and the Megabee videos I made the show how I communicated nonverbally. My training for verbalization the hardest part was diaphragmatic breathing. My primary issue with everything is coordination. Making the first sound was definitely the hardest part. But the hard work did not stoptheir check out this montage of SLP therepy I made this is a years worth of therapy every day including working on my own hours a day

https://youtu.be/D0W77_ZCAcQ

I wish every patient I saw in physical rehab could or would put the same effort into their treatment. It's so hard to watch them feel worse and worse about how their recovery is going when they're doing something to hold themselves back, like avoiding tasks because they're afraid they'll be painful. It's pretty common with hip, knee, and back surgeries (where it's rational and completely understandable), and I'm always worried that not allowing themselves to work as much as they're able will lead to a permanent decrease in independence.

Seriously I wish this too I want to be like a physical recovery coach to help motivate people because I feel like if I can recover from the impossible then anyone should be able to do it if they have the determination more novation and drive

Message or email me let me know if I can help your patients in anyway

Glad you're pulling through mate. Nice to see you beating the odds. I remember watching a movie called In Papillon dans La Cite in which the main character suffers with locked in syndrome. In the movie the character is totally conscious and able to discern everything around him. How "aware" is aware when you're in that state in reality? Is it like being normally awake but no way of getting yourself heard or how is it? Sorry if this question is a bit broad.

I mean I was feeling as if I was fully awake and fully aware of absolutely everything I could hear and see I had all of my memory my personality in my vocabulary. I just cannot move or show any expression it truly was nuts. Will you send a link to this movie so I can watch it.

If I do not answer your question please PM me

What’s the thing you are looking forward to the most but will be the most challenging OT + recovery wise? Just sheer independence I imagine is going to feel liberating

That would depend on which stage in my recovery but once I got some movement it was to itch my own face. Oh my God you have no idea

Wow. Just wow

😱 I know bro

I hope this question is not too personal, but how did you deal with sexual urges?

No nothing is doing personal nowadays LOL it was extremely frustrating but every now and again someone lended a hand

Wait. Someone jerked you off while in coma? Who? And what kind of insurance do you have?

So I can’t really go into details about this just yet but let’s just say throughout my downfall as I was getting sicker I was in a relationship so there was some help from this person. Later on in my recovery there are also situations but I cannot go into detail as of now but I will be releasing a book in the future LOL

Sorry I just don’t want to get in trouble

Wait who would you get in trouble with?

We just wanna know if nurses jerk off people who are in a coma lmao

This is my only comment in the thread so i might come off as an ass, so i want to clarify that you are fucking awesome

I would get myself in trouble it’s hard to explain but let’s just say yes this does happen on occasion in various hospitals

But I am mainly referring to my past relationship

Can you get an erection and ejaculate when youre in a coma?

Yes to both however I was not truly in a coma I was in a pseudo coma

So every now and then a nurse gave you a handjob?! Sorry if this sounds rude, it is an honest question.

Ugh guys I know you really want the answers to everything regarding the subject but I cannot provide them right now. All I can say is when I was fully locked in I was still married. We had a plan of cryogenically freezing my sperm. For after my imminent death. This is how I know the plumbing still works in that state! I really can’t go into any more details about any of this until later but follow along with my journey in everything will be tall

The plumbing, good lord haha

When you think about it it’s really strange that it’s the last one nothing else works LOL

Say what?!?

There were some offers but it’s not like random medical personnel would just offer that shit

Doctors or nurses sexually relieved you? No judgement, just genuine curiosity!

No lol

My boyfriend was in a medically induced coma for nearly a week, he just came out of it two days ago. He was diagnosed with ARDS because of vaping thc cartridges.

He’s having a lot of trouble trying to understand that he is getting better everyday. That they wouldn’t have taken him off of life support if he wasn’t. His anxiety is really high and he’s terrified that he’s going to die.

What do you think I can do to ease his anxiety? Did you go through anything similar when you woke up?

Do you remember everything from it? He woke up and doesn’t remember anything at all. I’m curious if it’s because they had to put him under sedation rather than his body shutting down and doing that on it’s own.

Glad you’re improving, sending good vibes to you. 🖤

First off let me say how sorry i am that is fucking horrible.

What is his current status right now medically?

For me it was kind of different I was actually more scared that I would never die and I would be stuck inside my on body forever, however when I begin my rehab process I was putting myself through so much pain and I was then worry that I would die and all this hard work would be pointless

One thing I will say that is crucial in recovery is having a positive attitude no matter how down you feel. I know that this will be equally as hard on you as him but try to remain positive and give him hope. Remind him that worrying about potential outcomes will not help anything or change anything it will only drive him crazy.

Honestly no matter what his prognosis is there is still hope if he wants it bad enough he can get it our lives are not pre-ordained we have choices I am proof of this.

Everyone said it would be Americal if I even survived and then I would never speak again well look at me now I can’t walk yet but I am doing better than anyone could ever imagined.

I really wish the best for you and your boyfriend

Feel free to contact me this is part of my new calling is to provide motivation for people in all sorts of physical and mental recovery

Just curious. There was an episode of House MD where someone had the same condition. Have you seen it? Would you say that it's an accurate portrayal?

I have not seen it but I was just told about it, I plan on watching where is soon I will let you know

What about The Diving Bell and the Butterfly?

Oh yes definitely you know when I started writing my book I did it The way he wrote his

What did you feel when people were talking about you as if you were braindead? How was sleep? Sorry for the multiple questions it just sems so surreal.

Well it felt beyond awful and so depressing and no I did not sleep only passed out this is a glimpse of that. https://youtu.be/gMdn-no9emg

While locked in, did you see and could you focus your vision?

No, permanently looking at the ceiling

Thank you so much for doing this and from the bottom of my heart congrats on your progress!

Do you remember what it felt like to blink again after losing the ability to? And maybe a weird follow up, any idea how you knew how to blink? Thanks again!

First off thank you so much!

It felt very refreshing also I was extremely excited I am might be escaping from being locked in.

I have no idea how I first Blinked lol

Since I assume you were ‘locked in’ when you were actively using heroin, did you go through a withdrawal that you remember? Are you in recovery (from heroin) now?

I was diagnosed May 24, 2017 by the time I was locked in it was late December of 2017. Withdrawal symptoms were all done by this

I just had several anniversaries. Check this out:

Yesterday May 24, 2017 at approximately 5 PM I was brought to the emergency room at UMass Memorial hospital in Worcester Massachusetts. Life would never be the same!

The Hat Trick Of Anniversaries

Three Years Sober

I was diagnosed with a terminal progressive disease. On May 24 & 25, 2017, I was so addicted that I got high by freebasing heroin right in my hospital bed.

On the morning of May 25, 2017, a team of six neurologists came in to tell me that the word progressive means this will only get worse and that I would have roughly 6 months to live. They told me if I continued to use substances I would accelerate this timeline and make things much worse. Later that day I realized I knew what I needed to do and that I wanted to get clean from everything and fight for my life. I wanted to live. I chose to live.

When you are addicted to a powerful drug you rationalize idiotic ideas to yourself. They seem rational at the time but they are not. Since the doctors told me that this disease was caused by inhalation, I figured that it would be okay if I only sniffed it going forward.; idiotic idea. As my disease progressed, I could have easily went back to my old ways but I resisted the urge. I decided to choose a new path.

It is a fact that when I was locked in, it would have been impossible for me to do drugs on my own, but there are people who would have helped me. I chose not to contact them. Many people may think that during my recovery, it would have also been impossible to get drugs because I was in a hospital. Let me assure you that if a person wants something bad enough they can make it happen but I chose not to and I continue to choose that every day.

I’m very happy to be alive and I am ecstatic that I am sober from everything including cigarettes for 3 years now!!!💪🏼💯😀

Sobriety #Recovery #OpiateAddiction

Post-traumatic growth (PTG) is a theory that explains this kind of transformation following trauma. It was developed by psychologists Richard Tedeschi, PhD, and Lawrence Calhoun, PhD, in the mid-1990s, and holds that people who endure psychological struggle following adversity can often see positive growth afterward.

I made a very anti-climatic slideshow that all air on May 26 my three year anniversary of sobriety

 https://youtu.be/r-JiUtjhja8

Please subscribe to my YouTube channel and check out everything I have been doing!

 https://www.youtube.com/channel/UCpoJxQNKSybRuSXEEuQ0cNA?view_as=subscriber

Well internet stranger, I don’t know you but I admire you! From freebasing in a hospital bed to 3 years clean is a huge feat and you are awesome! Quitting heroin AND cigarettes is huge! Congratulations and I’m glad your health has improved and glad all the doctors were wrong with their dreary predictions. You are an inspiration and I thank you for sharing your incredible story!

Thank you so much it’s been a hell of a journey and I want to share with everyone exactly the way it happened

If this happened to you from a bad batch of heroin, does that mean there are potentially others who got the same batch in the same position? Do you know anyone else who got heroin from the same batch? Happy you're doing better and sorry went through this

This is a excellent question if I had coins I would give you an award. Honestly it makes me think someone deliberately poisoned me. I am originally heard that the reason no one else was sick is because I had a pre-genetic disposition but I now know there is no evidence to support this so I wonder

This may sound insensitive but I’m laying in the bath right now and I just looked at the ceiling and pretended i was you. I panicked immediately. Did you have a sudden moment where you “realized” you were locked in and did you panic. What was the first question that came to mind? Was it “Is this forever?” Was your heart racing?

Yes I sure did it it actually took two weeks for me to realize that no one thought I was “in there” I would have severe panic attacks. There was probably only four months of the only looking at the ceiling. Eventually I will begin to have an outer body experience where it seemed like my eyes were looking down from the ceiling so I actually saw myself and the whole room. I know this may sound far-fetched but like I don’t even believe in shit like this I am honestly have no explanation maybe it was my brain trying to cope and playing tricks on me.

I have talked to visitors I have during this time and I could explain everything they said including the outfit they were wearing.

If you watch my neurological brain storming video you will see them by heart rate was constantly rising

That’s so disturbing. I’m so sorry.

Disturbing yes but thankfully I made it through by some miracle!

This is so bizarre because I just read your post about positive effects Covid potentially had on your nervous system in another sub and then went back to the front page and here you are!

How are you doing emotionally? I can’t imagine being locked-in, having Covid and then being under quarantine. Truly nuts. Are you seeing a therapist regularly to help you process all of this?

It’s funny emotionally I’ve never been better. LOL I obviously have way too much freedom and enjoy sharing my story with everybody

Introflective period of locked in and nonverbal

Even though there has been much physical and emotional pain,sadness,hardships,disappointments, and things to be anxious about since I have been in recovery. I’ve been in a more appreciative overall happy mood. There are many things I complain about and would drive anyone crazy in my situation but I’m talking about depression. I am not sure exactly what it is but maybe it’s the fact I am so grateful to be alive I did not carry the same depression I used to. There’s seem to have been a shift in my brain with overall mood. Before my injury even though there were many problems and much sadness I really had a privileged and wonderful life. It’s really interesting to think how I was able bodied, independent, and financially sound and then compare things to my current situation, my mental health is much improved. I was discussing this with Dr. Devitta a physiologist today and he said in the all of his years practicing he has never heard of anything like this. He says that this is really sophisticated way of thinking and that it’s actually changed my perspective is really great . I have been thinking about this for a while and wondering why I was trying to gather the right words to explain what I think is going on. I Believe spending about one and a-half years being locked in then virtually locked in and finally nonverbal, I had so much time with personal introspective thought. I was speaking with myself I within my own mind with two voices both my own about everything basically all day long. When you think about this it more personal conversation and working out internal issues than most do in a lifetime. The ultimate therapeutic retreat. This is a self help workshop that virtually no one has or will go through. Luckily I have came out the other side better. I really thought about and discussed absolutely everything with myself. It’s not even like I fully worked out all my life problems but more like I have come to terms with everything that saddened me which in turn caused me to self medicate.

The development of the Posttraumatic Growth Inventory, an instrument for assessing positive outcomes reported by persons who have experienced traumatic events, is described. This 21-item scale includes factors of New Possibilities, Relating to Others, Personal Strength, Spiritual Change, and Appreciation of Life

I do see a psychologist regularly

Thanks for posting, and so happy to hear you’re doing better.

In times when it was worst, were there things you thought about to pass the time? Did you envision a life within your head to keep you sane?

Medical professionals have said to me having my cognition the entire time was a gift and a curse. I definitely traveled within my head a lot I did a lot of self talk

I remember when my nana was waking less and less towards the end of her life and the doctors and nurses all spoke to her like she was awake and fully understood what they were saying. That stuck with me and I do the same thing with my kids from birth (“we’re going to change your bum. Here comes a wipe! All done cleaning, now a new diaper and you’re good to go!”). Was there anything that doctors or nurses did or said when they didn’t know you could hear them that you appreciated most?

There were so many that did not speak at all so any verbalization was improvement. Some would give me compliments like you look good today, or say it’s OK honey you’re gonna be OK

What a journey. What do you think should be implemented to ensure people are 'in there' by doctors/medical staff to work that out quickly? and how did the time pass? , i cant imagine being in that position. All the power to you

It is really hard to say because these are such rare and extraordinary circumstances. I truly believe everybody was doing in there after the best with my care. I really think speech pathology should be monitoring these patients as well as neurologist every day to see if there is a change. Because one day I could blink again who knows when the breakthrough could take place

Sorry to be bleak but at any stage did you wish in your mind that you could just die?

There were stages of this for sure but eventually I was like no fucking Way I am not going out like this

How fast was your decline into paralysis? What was the very first symptom you noticed?

I first noticed symptoms around May 14, 2017 10 days before when does the hospital now looking back they were very subtle differences in the months leading up to my hospitalization. I could walk when I initially got to the ER this was on May 24

Then December so roughly 6 months https://youtu.be/gMdn-no9emg

This is me October 5, 2017 https://youtu.be/Vuz7SfcW8Qs

Thank you so much for sharing your story.

You mentioned being fully aware of your surroundings, but doctors thought you were brain dead. I hope this question isn’t too insensitive, but is it possible to cry/release involuntary tears at that stage?

So I want to be clear about this I over heard nurses and other staff say he is brain dead. Doctors never really thought of this to be true at least not in the clinical sense of the term. They did think i was disconnected from all reality and no way I had cognition.

When I was fully lock in no I could not cry but once I could blink I could cry and scream in pain

I’m so happy to hear of the progress you’ve made! I’m an occupational therapist and this is why I went into the field of OT. I was wondering if you could share any good/not good experiences you may have had with OT? To inform myself and colleagues how to be better or more considerate practitioners. Wishing you all the best on your continued road to recovery!!

I’ve had so many amazing OT’s in my recovery. I think there is too much usage of the stereo typical cone grabbing. You definitely want to start using functional items as soon as possible also I believe it is important you re-educated on proper grasp technique search as the pincer grasp. When you are dealing with someone who has a Trumatic brain injury it is very important to break things down in the most simplistic manner. Also the more humor and fun you can include in your therapy sessions the more successful they will be I will send you some links I hope you share them with you coworkers!

Occupational therapy links to my YouTube channel

 https://youtu.be/jChNovIxEk8

https://youtu.be/FWxclWodSFs

https://youtu.be/GZ5J7swveWQ

https://youtu.be/E-2xPGAL5VM

https://youtu.be/vafBpoeBrG0

https://youtu.be/BuzlTk-2P6c

https://youtu.be/0KT1MW-vfIs

https://youtu.be/iL9zKmQM3h0

https://youtu.be/ilrHteCzj9g

Also the reason I have been so successful is I am currently always doing OT on my own. Encourage your patience to do the same Show them my channel Maybe it will provide motivation

I'm sure it was very hard to go back to normal. What was it like having to "relearn" to walk? How did you get to that stage in the first place and how long did it take for you to stand/walk again?

P. S. I'm wishing you all the best and to have a speedy recovery and reintroduction to everyday life my man. Keep your head up!!

So literally I’ve got to learn to redo everything from literally wiggling a single finger if you look at my videos about contractors or deformed hands you can see how bad off I was. The truth is I am just at the very beginning of learning how to step. I have just really learned to hold my balance in sitting by myself unsupported. This is definitely not a speedy recovery but at least I am recovering and then will walk maybe even run one day soon. I have plans of doing the Boston marathon in the next 3 to 5 years

That sucks but it's only gonna get better from here friend. Just keep on keeping on!

Yes but it will and I am grateful for this

What was the most messed up thing someone said about you while they thought you were brain dead and have they since apologized for saying it?

Probably when my uncle says don’t worry the problem work it’s self out any day now. Meaning don’t worry about the financial burden he won’t be dead.

And the he is a fucking drug attic and does not deserve healthcare treatment

How do you feel about the people freaking out because they can't go to restaurants for 2 months?

Haha like you don’t realize how good you have it chill the fuck out. I have learned the hard way the most valuable thing you have is really your physical health by wanting to rush things just so people can go back to normal life we are putting everybody’s physical health at risk

By the way just my luck I also had COVID-19 LOL check it out

Some weird things happen since I recovered from COVID-19

I wrote this to some neuroscientists I know The other day

Before I got sick from COVID-19 I was in the middle of recovery from toxic acute progressive Leukoencephalopathy as well as locked in syndrome. I was one year eight months into my recovery when the pandemic struck

I will list some dramatic changes since I recovered from COVID-19

1. ⁠My feet have been hypersensitive for over a year and a half after the Covid they are no longer
2. ⁠My left knee had maybe 10° of active flexion laying in supine, 40° of passive flexion if they really worked me out. Post Covid19 I can actively do 50° and passively 85.
3. ⁠Overall coordination has improved in every area
4. ⁠There is more inflection in my voice and pitch variation.
5. ⁠My overall tone has relaxed significantly in comparison to what it was
6. ⁠I would always feel as if I leaned my trunk forward that I was going to fall even though I knew I safe I would freak out and it would make my extensor tone kick in to high gear. Now I am practicing reaching for my toes!

My physical therapist are baffled. They thought I would have lost ground not having therapy and going through COVID-19.

Also I am now doing slide board transfers with staff every time I want to get out of bed. Before COVID-19 I was a ergo lift

Has there been any similar positive reactions in people that recovered from COVID-19 and have traumatic brain injuries

Have you seen San Junipero?

Negative should I?

Were you aware during your autonomic storming episodes? What were they like?

Yes fully aware god awful oh my god they were perhaps the worst thing next to being locked in. Eventually they would be so intense that my eyes Would go black and I would pass out several times I was pretty sure I died

That sounds completely frightening. At any point did you get the feeling you just wished you would die bc the thought of being fully aware but unable to move seems like straight hell to me. At any point did you want to give up? How did you deal with these feelings?

Yes I did but there was really nothing I could do that was a big fear after I survived hospice I realized I probably will not die and maybe beer this way for eternity. There were times where I wanted to get involved also there were times where I wanted to fight

I will be doing my first live on camera interview June 20 10 AM to 12 PM being interviewed by Thrives Health Mastery Group! Follow Jacob Haendel YouTube or Jacob Haendel Recovery Facebook to make sure to catch it live

How can I be more comfortable with speech therapy? I need a speech therapist, and although I'm not super worried about the language part of it I'm scared of the physically getting my jaw to work properly part.

You seriously have to push yourself harder than you even think is possible and when you want to give up and when you push even harder https://youtu.be/9n2bJ027gKQ

First of all when I first began SLP I had absolutely no movement in my face they show me in a mirror I have no idea how I look I actually cried,.

This gave me insane amounts of motivation to get better I am going to send you a few links

https://youtu.be/yhHzWZBj0kA

https://youtu.be/D0W77_ZCAcQ

Are you completely recovered now or do you still have trouble with some things?

If you take a look at my YouTube page you will have a good idea of where I’m at but yes I still need lots of help I still have a long road to go but I have come so far in comparison

Holy shit. That is terrifying. Did you experience any abuse while locked in? I spent a few months in the hospital and in a physical rehab hospital after a bad injury and a lot of the care was bad. I was verbally able to speak up though. I worry about people who aren’t.

Nothing aside from negative commentary when they thought I was not in there

I am really sorry to hear this what happened to you if you don’t mind me asking

How if any has your libido changed?

Have your tastes in terms of food or beverage changed? Do you find for example foods to be overly sweet or intense now?

Do you think your personality has changed? For example do you think that you're more patient now or maybe you're more/less emotional dealing with events?

Are there any games you liked to play?

Ironically even when I was locked in The only things that function properly were my ears and my dick

I was on a feeling too so I needed to re-learn how to eat from a puréed diet on. I went through many different where things tasted really hot or bad all kinds of things. I am back to normal now with one exception I can’t handle caffeine anymore.

My personality is the same but I value things much more. The simple things in life. Overall I am much happier. I have been told that I have the patience of a saint LOL

I’m not really into games but I do on my own video editing and I like to write and read as well listen to music and watch movies

Did you involuntarily blink while locked in, and did you sleep when locked in? If so, would your eyes just close when it was time?

When someone is in that state there are only involuntary vertical Eye movements. Honestly I am not sure what my eyes were doing when I passed out. I think it changed a few times during this six months.

In your opinion, how can you help reach another person who is locked in? What caught your attention in those days that you can remember?

So I believe it is very important to do daily checks on finding a way to see if someone can do something different because things obviously change day today also it is imperative to find a way to establish a yes and no system

Having that much time alone with your thoughts, did you try to focus on anything? Was there any part of your thinking you would define as productive? Make music, write stories, come up with solutions for problems, anything like that?

Yes I tried to keep my mind busy doing math problems in geography I had visions of my future things like that but there was always some sort of medical crisis that kept me occupied LOL

I've been absolutely terrified yet fascinated with LIS for years and that's insane that you're managing to recover from it. Congratulations dude.

Did you sleep while you were locked in? Or were you "awake" the whole time?

Do they have any idea how you managed to escape from being locked in?

I was either awake or I passed out there was definitely no restful times. It is so crazy that I actually managed to escape I believe that I was so miserable with the thought of going out like that but I managed to break through I just refuse to except that my only explanation

Did you have any thoughts thinking that it could be hell? You are very strong minded. Edit. Also, I used to do heroin and started with smoking but moved to shooting. This is the only time that shooting would be safer than smoking, probably.

Seriously man I always thought I was being safer and that the worst thing that could happen was death and learned the very hard way that there is no safe way to do this or any drug also that there are much worse things than death

Having fought with addiction before your TBI, how did you feel after fully regaining awareness of your surroundings? Was it (and is it still) a struggle to stay clean? Is there anything you wish your loved ones could do to to better support you in your sobriety?

Actually I am in a completely different place those struggles or another Life time ago. Even the thought of how are used to abuse drugs alcohol makes me sick I want absolutely nothing to do with it.

I look at things as if I have had three and lives. My earlier crazy life. My life of being locked in. My ongoing recovery life. I am really looking forward to my fourth life when I am recovered and I can do good in the world

Did you sleep? Or were you fully awake the whole time?

I did not really sleep however I did pass out

Did you go through detox while locked in? Did you crave heroin while locked in?

No I got clean the day after I was diagnosed I was still smoking heroin in my hospital bed but then something changed in me and I decided I wanted to try and fight

Read the description https://youtu.be/r-JiUtjhja8

What were your dreams like during that time?

Thanks for sharing all this! You’re inspiring.

Edit: forgot “like”

I never really had dreams however in December 2017 in the neurological storming a video on my YouTube page I started experiencing intense hallucinations but I knew they were not real. I read some EEG report that was taken in that time videos it it showed that my Theta was slowing maybe this would explain why I do not know

I read some of your other replies and you said during the time you were locked in you talked to yourself to keep sane. Do you think you talk to yourself more than the average person now, just out of habit?

A broke All of my habits thank God. When I was nonverbal I would say yes by sticking out my tongue it took months to stop doing that after I learn to talk

My first attempt at trying to feed myself so funny https://youtu.be/jChNovIxEk8

Hi, and many thanks for doing this AMA.

My question:

The things that were important to you, before your locked in part of your life took over. Do you still have that same mindset or has how you view what's important changed?.

Thanks in advance.

Oh my God completely changed I am going to depressed sad hard-working and hard partying I did not enjoy the simple pleasures. I felt like I always needed to have some sort of a buzz on the to be comfortable. I definitely did not love myself. My priorities in life have totally changed all I want to do is help others also advocate for those stuck in the healthcare system.

You are so welcome I hope you will subscribe to my YouTube channel to follow me I promise it will be an exciting journey

https://www.youtube.com/channel/UCpoJxQNKSybRuSXEEuQ0cNA?view_as=subscriber

Do you regret doing drugs?

Yes sir I regret a lot... I plan on helping kids and adults learn from my mistakes as well as motivated people in physical recovery

This is quite the tale. Are there normal things you don't take for granted anymore?

Siri say bro... I take absolutely nothing for granted anymore the ability to eat solid food or speak is such a gift. Absolutely everything is so much sweeter now it’s fucking awesome

Thanks for sharing your story! I'm absolutely no expert on the matter, but how is it possible there wasn't any equipment to read your brain activity tot confirm that you're still cognitively aware?

There are EEGs for this part just because there are slow brain waves which is what I have does not mean you can think. Trust me I have been researching this extensive line in what I have learned is they know more about the moon then they do with the brain

When your eyes weren’t open while you were in lock in, how did you tell between sleep and waking?

I was going through triple tachycardia the only time I slept was more of just passing out from my heart rate going upwards of 160 BPM

My traumatic brain injury https://youtu.be/xAnfbOdQiV0

I really feel for you. What exactly did it feel like to be aware but not move? Was it paralysis?

It took me a few days to realize no one knew I could understand them and then ever heard that term coma , and I was like beyond petrified. Everything is like the worst nightmare

How long between smoking and the diagnosis? I used to smoke heroin many many years ago and I just became very concerned. Glad you made a full recovery though.

About one month they compared to arsenic poisoning

How was your perception of time while you were fully locked in? Did it feel as endlesss as I imagine it or did time start to pass ‘faster’? How did you cope with the perpetial boredom?

I have written about this before, but there are really not enough words I can express to you all to emphasize how much pain I was in. So I am going to try to explain in more detail. Even when I was not storming during this 8 month period, I was in agony. Even every sound would vibrate in a painful way throughout my entire body. The slightest breeze or touch would be unbearable, with a burning sensation. I felt like I needed to constantly be repositioned every 15 seconds from one side to the other. Even so, I could not get comfortable. It was like my skin was crawling, and I wanted to crawl out of my body. As I said before, my storming events would last between 5 and 24 hours long. During this period, I would have two hour breaks in between events. My body temperature would fluctuate between 106 and 95 degrees. I was dripping with sweat. And every morning from 5am-7am, I would become extremely cold, and would essentially get hypothermia. Even though I would have no movement at this time, it felt like my body was shivering. The majority of my storming was when I was in hospice. Because I was dripping with sweat all night long, I would wake up in a cold sweat, and my wife would typically fall asleep at 4am. There was nothing I could do to wake her up or call for a blanket. I would be screaming in discomfort and pain, and she would not wake up. This is because she was doing everything by herself and was burned out. But this would happen daily, between and 4am and 5am. Every day between 5am and 7am, the infomercials would begin. I spent every morning freezing cold, and in severe pain. I would have to listen to a religious nut every morning asking for money. He was such a scam artist. In my head, I would think, “what a fuckin asshole.” Even though I was feeling like I was already being tortured, this was an additional level of torture on top of the torture. He said you need to plant a seed, which would be the donation. In order to receive a harvest, which would be the hypothetical good thing you would get back, he had all of these ridiculous songs and it would drive me absolutely crazy every day. I will eventually find his name. I can picture him as I say this. After all, I did spend six months with him every day. Now I want to talk more about the pain. My resting heart rate was always around 180, with spikes over 200. This made me feel I was sprinting when I was in actuality laying in bed. My breathing was labored, and literally, every second was incredibly painful. It would not stop. It was just constant pain all day long for 8 months straight. There was no break whatsoever. I had no idea how I survived this. Maybe God spared me because I had to deal with him. The only thing that would somewhat help was the sleep medication, if it knocked me out. During this period of hospice, I was being prescribed over 50 medications that were scheduled. I had an addition 24 meds as needed. My narcotics were Copeus. They just kept upping my doses because I was getting no relief. I was on between 80 and 100 mg of methodone three times a day. In addition, I was prescribed 12 mg of liquid diloted. There were obviously many others, but nothing really helped. Because my pain seemed to not get any better, my ex wife and I decided to taper down. There seemed to be nothing that would give me any relief, even for one minute. I was in so much pain, I would look at the clock, and hope that time would pass, and this would just be over. After I felt like a significant amount of time had passed, I would look again at the clock. Sadly, only 3 minutes had passed. These 3 minutes felt like an eternity of pain. Even though I’m trying to explain it, I feel like my writing is not doing it any justice. It was truly unimaginable. If there is hell, that would be it. And Mike Murdock is absolutely going there.

Seconds felt like ours minutes felt like days days felt like months it was awful. I could only tell what time it was by the TV at 4 AM when the religious prosperity preachers began which I hated.

The only reason I know anything about this is because of that episode of House.

If you've seen that episode, how accurate was it from the point of view of the person that was locked in?

Also, not gonna lie, that's some scary shit! I'm happy you're out of it now.

I need to watch this and yeah it was unexplainable crazy awful scary shit. I love that show FYI

This reminds me of the story of the guy who was locked in for years and no one knew. (Martin Pistorius ) After they found out he was locked in they started therapy and he was able to communicate. What I always wondered why didn’t they try therapy first and just assume nothing is going on in there ? Why did they assume you were brain dead ?

This was just something I overheard Used to describe how i was irreversiblely damaged

What did you do to keep yourself sane? Didn't you get bored out of your mind?

Talk to myself about everything. I counted seconds to try and keep track of time since I could not see a Clock. I did math problems and geography in my head.

Had you expressed any wishes before you became sick, living will sort of thing? So many people say the whole 'if I'm just kept alive by machines' etc. I've got to wonder if people really think about it. Incredible recovery and what a few years you've had, keep on improving and all the best to you

As I Progressively got worse before I lost the ability to speak I did have a chance to go over this. It gets really complicated when you can no longer speak and you want your wishes changed LOL. There was a question of if I wanted tracheotomy to keep me alive however I did not want to but I never went over those in my wishes. I ended up getting one but I am glad I did because now my alive and recovering

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I cannot tell if this is a joke or you’re serious. I am not talking about quarantine which I also in but I am talking about being trapped inside your body unable to move or talk. People think you are in a coma or vegetative state trust me this makes quarantine a breeze! Same with having COVID-19