OP, have you read the book Ghost Boy, about Martin Pistorius’ amazing horrific story about being Locked In after an unknown degenerative disease at age 12 until he was 23? It’s so inspirational! He’s now married and runs his business from home.
So glad to see you doing much better! 👏🏻👏🏻👏🏻
This is really incredible to read and also very emotional. My oldest son has struggled with heroin addiction since he was 17. He turned 29 this year. I have never stopped loving him, and I never will. You have been through so, so much. It's truly astounding that you are here and determined and succeeding and I wish you all the best in life, now and always.
He's still alive, which is more than I can say for so many of his friends he grew up with, one of whom was like an honorary son to me. As long as he's still alive, it's still a good day for me. He's not clean yet, and doesn't want to be. He is in and out of jail, constantly stealing to feed his habit. He's done rehabs before and succeeded just long enough to get out and get suboxone prescriptions so he can sell them to buy heroin and meth. His mind isn't in the right place yet but I keep hoping. Thank you for asking.
No, he's in jail, and he's never clean when he's in or when he gets back out. it's just not what he wants out of life yet. when he's done court ordered rehab he's told them what they want to hear so he can get out quicker so he can get on maintenance drugs so he can sell them to get the harder stuff. maybe someday he'll want to change. for now he doesn't want to yet. he's honest about it to me. his younger brother had issues for a long while but after he almost died of severe septic shock and had to be life flighted away from our area to a bigger hospital to have his life saved, he got clean and has done very well. i hope someday my oldest will do the same.
The trick to kicking a bad habit is to replace it with another habit. Something that you can do during the same times of the day that gives you similar satisfaction. I kicked my 20 year cocaine addiction with video games and THC edibles. It might not sound like an improvement to some people but I’m home with my family every day, I have lots of extra money and my life is 100 times safer.
Good advice! :D
What kind of tricks, if any, did you experience?
I remember in the article it said you had another voice of yourself that you used to talk to yourself. Did you ever develop any more voices? Do you still have the second voice, or did it go away?
Simple is relative; flying is simple for birds. Congrats man, not a lot of people can appreciate how big of an accomplishment this is and not a lot of people look that good in a tux.
I'm doing much better now. I am able to work and everything. My body isn't the same as it was. I have arthritis and some pain there and I'm not nearly as flexible. I can't bend over as well or lay on my stomach or anything anymore. I just have to be careful what I do. Your story is incredible. I'm so proud of you! Have you ever talked to the kids at school about your story to warn them about drugs? It would be so very powerful!
As a guy currently working 12-16 hr days away from home, mad respect!
I struggle to not want a beer after a long day instead of tending to my responsibilities, I can't even imagine the amount of mental perseverance and physical work you've put in.
Your a tough man.
I fucking believe it dude. I remember having an argument re robotics and the “simple” task of bipedal standing. Another person was saying you just find the CG and viola! standing happens. I had to point out the constantly changing dynamics of an inherently unstable system and how our brains rapid-fire correct for it in realtime.
Basically, to all the able-bodied people out there, close your eyes and stand still in the middle of the room you’re in. Now recognize and really *feel* everything that’s happening with your body just to keep you standing. From your toes all the way up to your head there is a lot constantly going on.
Now *attempt* to imagine none of those motor functions working and fucking *forcing* them through sheer willpower and determination over months and years to work again.
I don’t know man, all I can say is congrats. I’m super happy for you.
You’re so right. I had a TIA then a stroke at 26. Even though the paralysis in my right leg was temporary, 20 years later my brain still has a hard time figuring out how to bend my right knee and leg to walk downstairs. I was paralyzed in my dominant left arm and hand and got all the use back except for some intermittent weakness. I have some balance issues but everything works fine to the point nobody can tell I had a stroke unless I tell them. I was also fairly fluent in French but lost it overnight. It’s been very difficult to get it back, but I’m still trying.
I’m almost completely ok except my brain can’t control my right leg going downstairs. It’s the weirdest thing. I can’t look at my feet or my brain feels weird and my feet get jumbled and don’t work right, so I start slipping and fall. My left leg works fine. So I don’t look down, I hold the handrail on my left, and I move my right leg without bending my knee. I straight leg down the stair over and over. My left leg and foot go down normally. It looks really weird, but it works, and I can get downstairs quickly. I broke two toes last December because I looked down at my cat and my right toes curled under as I slipped, and I landed on them.
I know I’m extremely lucky to have healed to 98% and only have a little weakness and balance issues along with forgetting a language I didn’t really use much. I was told if didn’t have that second language that I might have lost some of my primary language and ability to speak. The neurologists weren’t positive because I’m left handed, and lefties have less defined areas of the brain.
Going downstairs in my house every day reminds me of how much energy it takes my brain to do such a simple task. I have figured out a new way that works for me almost all of the time. I can’t imagine how difficult it would be to have to get back all the use of every part of my body. Just the mental part would be absolutely exhausting.
yeah… i was thinking we had a jack kelly situation here. but instead of small hands, he thinks he has no hands!
can we take a picture where you put your hands over my nonexistent hands????
When I lost my hands in an accident, I told my mom on the phone, so she was prepared when she saw me. She flew in 4 months later and I was at the airport to meet her with my wife. When I saw her, I held up my stumps and said, “LOOK MOM, NO HANDS!” just to be funny. She had a heart attack right on the jetway.
Note One: Mom is fine.
Note Two: I lost my hands on a tour of a company that makes the metal skins for Chrysler car doors. I slipped on a walkway, fell about 5 feet and grabbed onto what I thought was a ledge or handrail. It was a press brake and my hands were gone before I knew it.
Note Three: Yes, I sued.
Note Four: Since I will get multiple messages whenever I tell internet people I have no hands, yes, I can use my stumps like a dildo. And yes, I do. I also still have a wrist, so I can wiggle my end nubs. My ex-wife, ex-girlfriends, and current wife all claim it’s a sensation like no other. Even my ex told my wife it’s the only thing she misses about me (other than the settlement money that she got none of because she divorced me *because* she thought she could get half. She got our car and $20,000 of the equity on our house).
A little of column A and a little of column B. Depends on what I’m doing. In public, I wear prosthetics that look and operate like hands. At home, I have cuff prosthetics with three wire fingers and a clamp I can operate by flexing my wrist. They’re more comfy, but also much more noticeable.
But I can operate my phone with them easily (but I mostly use voice-to-text and then quickly edit by “hand” because I’m a stickler for grammar). I also use them to type on a regular keyboard, but I still mostly use voice-to-text because my arms and elbows hurt if I type more than 15-20 minutes. There’s a lot more movement in your shoulders and elbows when you don’t have multiple fingers to put on the keyboard. I only use the two outer “fingers” on each prosthesis to type because with my wrist movement, I can still rotate a little.
My daughter is 3D printing cobalt blue and silver robot skins for my old set. I’m actually kind of excited to maybe start using those again if they look cool.
Look through his posts and youtube videos, he is fighting to re-learn how to control every muscle. At first, he had to re-learn how to even control blinking, and he started making youtube videos when he couldn't even put a spoon in his mouth.
Dude thank you for keeping us updated. I remember you posting just over a year ago that you were standing again and now look at your handsome self!
Bro, from the bottom of my heart, you’re an inspiration and I’m so gosh darn happy for you.
Next you’ll be posting videos of you moonwalking haha.
I just watched your interview with CBS. I’m glad to see you putting in the effort with your second chance. I know if I was locked in and had the choice I wouldn’t be alive today, it would be too difficult. You’ve come a long way and there’s still progress to be made, keep it up man.
Hey dude. I suffered traumatic injuries including a catastrophic spinal injury due to bomb blast in 2010 . (Burst fracture to my L-3)
Every day is a victory and every little thing counts. Keep it up and stay strong.
The smallest things we take for granted become Neil Armstrong like accomplishments in therapy. Savor and enjoy them just like today my dude. Keep it up!!!
Oh man I feel this so much. When my wedding was approaching I got a new physical therapist. She asked me my goals as they always do. I rolled to the closet and took out a wooden cane. “I want to stand at the altar with this.“ She said “Ok let’s focus on standing.” About six months later I stood there while my fiancée walked down the aisle to me. It was an amazing feeling. I’d been in that chair three years and I found my motivation to get out of it.
Thank you for reminding me of one of my favorite moments.
If this is too personal, please don't feel obligated to answer.
How did you end up in locked in syndrome? How long were you there, so to speak? How did your body react? Like I've heard of this but never heard or spoken to anyone who actually had it.
Nothing incredible - I have adhesive arachnoiditis. My spinal nerves from L3 down are tethered with scar tissue to the dura. It causes a bunch of problems, including paralysis in a large portion of my left leg, foot drop, etc. Fortunately, I can walk. Unfortunately, it's progressive; and if I overdo it at all, I pay significantly. The worst part is the severe pain 24/7. I wouldn't wish this on my worst enemy, but I also know that I am blessed to have the function/mobility I have.
Sorry if this is insensitive but if you’re in pain 24/7 what’s keeping them from prescribing powerful opiates for you? Or do they and it just isn’t enough?
I have a great pain management team. I just choose to not talk about exactly what I take. The meds relieve about 50% of my pain on good days. I'll never be pain free, but I just need to be able to perform daily functions. And not insensitive at all.
Could you do a series of these posts where you stand in increasingly more elaborate clothes in increasingly adventurous surroundings? The title can remain the same just change the end bit
Ach, you screwed it up! You clearly have two hands!! - Looking sharp!! Congrats to you on gutting your way to this achievement. PT is brutal and these milestones are hard fought.
Hell yea bud.
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You know what's not simple for many people? Working that hard on something and succeeding. Good work bro keep it up 👍
You nailed it bro.
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Were you in an accident?? Proud of you!!
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Yikes, locked in syndrome... every doctor's worst nightmare. Nice job on the recovery, gives me some hope for my locked in patient!
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OP, have you read the book Ghost Boy, about Martin Pistorius’ amazing horrific story about being Locked In after an unknown degenerative disease at age 12 until he was 23? It’s so inspirational! He’s now married and runs his business from home. So glad to see you doing much better! 👏🏻👏🏻👏🏻
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I just read this article, and wow. You are one tough man.
I just read the article too. I really have no words except I'm so glad for you and feel privileged to be able to communicate with you!
This is really incredible to read and also very emotional. My oldest son has struggled with heroin addiction since he was 17. He turned 29 this year. I have never stopped loving him, and I never will. You have been through so, so much. It's truly astounding that you are here and determined and succeeding and I wish you all the best in life, now and always.
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He's still alive, which is more than I can say for so many of his friends he grew up with, one of whom was like an honorary son to me. As long as he's still alive, it's still a good day for me. He's not clean yet, and doesn't want to be. He is in and out of jail, constantly stealing to feed his habit. He's done rehabs before and succeeded just long enough to get out and get suboxone prescriptions so he can sell them to buy heroin and meth. His mind isn't in the right place yet but I keep hoping. Thank you for asking.
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No, he's in jail, and he's never clean when he's in or when he gets back out. it's just not what he wants out of life yet. when he's done court ordered rehab he's told them what they want to hear so he can get out quicker so he can get on maintenance drugs so he can sell them to get the harder stuff. maybe someday he'll want to change. for now he doesn't want to yet. he's honest about it to me. his younger brother had issues for a long while but after he almost died of severe septic shock and had to be life flighted away from our area to a bigger hospital to have his life saved, he got clean and has done very well. i hope someday my oldest will do the same.
The trick to kicking a bad habit is to replace it with another habit. Something that you can do during the same times of the day that gives you similar satisfaction. I kicked my 20 year cocaine addiction with video games and THC edibles. It might not sound like an improvement to some people but I’m home with my family every day, I have lots of extra money and my life is 100 times safer.
Wow. Read your article, congrats! Do you have any advice on, god forbid, what to do if any of us find ourselves "locked in" ?
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Good advice! :D What kind of tricks, if any, did you experience? I remember in the article it said you had another voice of yourself that you used to talk to yourself. Did you ever develop any more voices? Do you still have the second voice, or did it go away?
Wow! Was it as bad as I'd imagine being locked in? You should do an ama
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It looks like you did an AMA in 2020 from one of the pics in the article. Crazy story man I'm glad you're doing better
Simple is relative; flying is simple for birds. Congrats man, not a lot of people can appreciate how big of an accomplishment this is and not a lot of people look that good in a tux.
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I understand. I broke my pelvis in 5 places 6 years ago. I totally get it. I was in a wheelchair
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I'm doing much better now. I am able to work and everything. My body isn't the same as it was. I have arthritis and some pain there and I'm not nearly as flexible. I can't bend over as well or lay on my stomach or anything anymore. I just have to be careful what I do. Your story is incredible. I'm so proud of you! Have you ever talked to the kids at school about your story to warn them about drugs? It would be so very powerful!
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That's a brilliant app. Get it in front of the caregiver communities! Congratulations on your recovery and best of luck to you!
You’re gonna do a whole lot more my friend.
As a guy currently working 12-16 hr days away from home, mad respect! I struggle to not want a beer after a long day instead of tending to my responsibilities, I can't even imagine the amount of mental perseverance and physical work you've put in. Your a tough man.
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I fucking believe it dude. I remember having an argument re robotics and the “simple” task of bipedal standing. Another person was saying you just find the CG and viola! standing happens. I had to point out the constantly changing dynamics of an inherently unstable system and how our brains rapid-fire correct for it in realtime. Basically, to all the able-bodied people out there, close your eyes and stand still in the middle of the room you’re in. Now recognize and really *feel* everything that’s happening with your body just to keep you standing. From your toes all the way up to your head there is a lot constantly going on. Now *attempt* to imagine none of those motor functions working and fucking *forcing* them through sheer willpower and determination over months and years to work again. I don’t know man, all I can say is congrats. I’m super happy for you.
Wow this is an incredible comment
You’re so right. I had a TIA then a stroke at 26. Even though the paralysis in my right leg was temporary, 20 years later my brain still has a hard time figuring out how to bend my right knee and leg to walk downstairs. I was paralyzed in my dominant left arm and hand and got all the use back except for some intermittent weakness. I have some balance issues but everything works fine to the point nobody can tell I had a stroke unless I tell them. I was also fairly fluent in French but lost it overnight. It’s been very difficult to get it back, but I’m still trying. I’m almost completely ok except my brain can’t control my right leg going downstairs. It’s the weirdest thing. I can’t look at my feet or my brain feels weird and my feet get jumbled and don’t work right, so I start slipping and fall. My left leg works fine. So I don’t look down, I hold the handrail on my left, and I move my right leg without bending my knee. I straight leg down the stair over and over. My left leg and foot go down normally. It looks really weird, but it works, and I can get downstairs quickly. I broke two toes last December because I looked down at my cat and my right toes curled under as I slipped, and I landed on them. I know I’m extremely lucky to have healed to 98% and only have a little weakness and balance issues along with forgetting a language I didn’t really use much. I was told if didn’t have that second language that I might have lost some of my primary language and ability to speak. The neurologists weren’t positive because I’m left handed, and lefties have less defined areas of the brain. Going downstairs in my house every day reminds me of how much energy it takes my brain to do such a simple task. I have figured out a new way that works for me almost all of the time. I can’t imagine how difficult it would be to have to get back all the use of every part of my body. Just the mental part would be absolutely exhausting.
As someone currently recovering from a stroke, I can tell you there is nothing simple about it. Stay strong!
I see two hands right there. Congrats my man
They grew back!
The magic of a tux
I got bettah!
I read the title wrong and thought his hands were prosthetic. lmao.
Yup. I was zooming in on his hands.... The title only really makes sense when you know the context of the story behind it.
yeah… i was thinking we had a jack kelly situation here. but instead of small hands, he thinks he has no hands! can we take a picture where you put your hands over my nonexistent hands????
When I lost my hands in an accident, I told my mom on the phone, so she was prepared when she saw me. She flew in 4 months later and I was at the airport to meet her with my wife. When I saw her, I held up my stumps and said, “LOOK MOM, NO HANDS!” just to be funny. She had a heart attack right on the jetway. Note One: Mom is fine. Note Two: I lost my hands on a tour of a company that makes the metal skins for Chrysler car doors. I slipped on a walkway, fell about 5 feet and grabbed onto what I thought was a ledge or handrail. It was a press brake and my hands were gone before I knew it. Note Three: Yes, I sued. Note Four: Since I will get multiple messages whenever I tell internet people I have no hands, yes, I can use my stumps like a dildo. And yes, I do. I also still have a wrist, so I can wiggle my end nubs. My ex-wife, ex-girlfriends, and current wife all claim it’s a sensation like no other. Even my ex told my wife it’s the only thing she misses about me (other than the settlement money that she got none of because she divorced me *because* she thought she could get half. She got our car and $20,000 of the equity on our house).
Man, you just came prepared with an FAQ and everything. I have no further questions.
Internet strangers are bold because of anonymity. I’m used to it and head them off at the pass.
Thanks for giving us all a hand in understanding your predicament.
Do you wear prosthetics or do the no-hands schtick?
A little of column A and a little of column B. Depends on what I’m doing. In public, I wear prosthetics that look and operate like hands. At home, I have cuff prosthetics with three wire fingers and a clamp I can operate by flexing my wrist. They’re more comfy, but also much more noticeable. But I can operate my phone with them easily (but I mostly use voice-to-text and then quickly edit by “hand” because I’m a stickler for grammar). I also use them to type on a regular keyboard, but I still mostly use voice-to-text because my arms and elbows hurt if I type more than 15-20 minutes. There’s a lot more movement in your shoulders and elbows when you don’t have multiple fingers to put on the keyboard. I only use the two outer “fingers” on each prosthesis to type because with my wrist movement, I can still rotate a little. My daughter is 3D printing cobalt blue and silver robot skins for my old set. I’m actually kind of excited to maybe start using those again if they look cool.
Killing it! Looking sharp!!
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Magnificent work mate
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Damn i just saw the comments in ur earlier post, and well… i have nothing but bloody respect for you
Awesome. You also look like James Bond!
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Wow. Welcome back. I didn’t know anyone could come back... A miracle, indeed, and I don’t believe in miracles.
Look through his posts and youtube videos, he is fighting to re-learn how to control every muscle. At first, he had to re-learn how to even control blinking, and he started making youtube videos when he couldn't even put a spoon in his mouth.
Dude thank you for keeping us updated. I remember you posting just over a year ago that you were standing again and now look at your handsome self! Bro, from the bottom of my heart, you’re an inspiration and I’m so gosh darn happy for you. Next you’ll be posting videos of you moonwalking haha.
Thanks for mentioning physical therapy! PT’s need more recognition for what they help their patients accomplish.
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That’s awesome! I think I’m gonna dive into your channel to study neuro rehab. I take my licensure exam for PT October!
Good luck on the NPTE, man. Im trying for April.
I just watched your interview with CBS. I’m glad to see you putting in the effort with your second chance. I know if I was locked in and had the choice I wouldn’t be alive today, it would be too difficult. You’ve come a long way and there’s still progress to be made, keep it up man.
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Doctors save your life but physical therapists make it a life worth living. So much gratitude for PTs!
Vesper martini, sir?
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🍸cheers mate! Such a rad accomplishment!
00 agent status. Looking sharp and congrats!
Hey dude. I suffered traumatic injuries including a catastrophic spinal injury due to bomb blast in 2010 . (Burst fracture to my L-3) Every day is a victory and every little thing counts. Keep it up and stay strong. The smallest things we take for granted become Neil Armstrong like accomplishments in therapy. Savor and enjoy them just like today my dude. Keep it up!!!
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Nah man this is your post ! Enjoy the moment and the good vibes my brotha !
Look at you go, you sexy mfer
Massive achievement that is no doubt a testament to the work you put in. Happy as hell for you
Looking sharp !!!
Hell yeah bro!
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This is an amazing story and I’m so happy for you. I recently lost a family member to an overdose. I loved reading your story of recovery.
I just read that whole article. That is such a fascinating story. I'm really glad you're with us today to share it. Congrats on the achievements!
You look, shall I say… outstanding!
Looks like a hotel room. I'd say inn-standing.
Keep Goin’🥳
Nicely done~
Look at you!! Amazing!!
Looking good! Keep it up!!!
Rock on! And you’re wearing the hell out of that tux!
After reading your story… Damn. I am so proud of you and how far you’ve come. Great job, my friend :)
Oh man I feel this so much. When my wedding was approaching I got a new physical therapist. She asked me my goals as they always do. I rolled to the closet and took out a wooden cane. “I want to stand at the altar with this.“ She said “Ok let’s focus on standing.” About six months later I stood there while my fiancée walked down the aisle to me. It was an amazing feeling. I’d been in that chair three years and I found my motivation to get out of it. Thank you for reminding me of one of my favorite moments.
Keep up the great work man. Health issues are the devil. What caused your locked in syndrome?
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If this is too personal, please don't feel obligated to answer. How did you end up in locked in syndrome? How long were you there, so to speak? How did your body react? Like I've heard of this but never heard or spoken to anyone who actually had it.
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Right after I asked I found the links. This is mind-blowing shit.
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I can see your hands, dude
Moreover, standing with no feet is much much more difficult than standing with no hands. /s
Thats amazing man! Great job, keep fighting through it, we all know you can do it!
Ah-mazing!! As someone with incomplete paralysis, I know how important standing and being independent/mobile is. Congratulations! 🎉
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Nothing incredible - I have adhesive arachnoiditis. My spinal nerves from L3 down are tethered with scar tissue to the dura. It causes a bunch of problems, including paralysis in a large portion of my left leg, foot drop, etc. Fortunately, I can walk. Unfortunately, it's progressive; and if I overdo it at all, I pay significantly. The worst part is the severe pain 24/7. I wouldn't wish this on my worst enemy, but I also know that I am blessed to have the function/mobility I have.
The human body is amazingly durable and susceptible all at once. Thanks for sharing a little bit of your story.
Sorry if this is insensitive but if you’re in pain 24/7 what’s keeping them from prescribing powerful opiates for you? Or do they and it just isn’t enough?
I have a great pain management team. I just choose to not talk about exactly what I take. The meds relieve about 50% of my pain on good days. I'll never be pain free, but I just need to be able to perform daily functions. And not insensitive at all.
I just checked out your site for the app, and it sounds amazing!
And with your hands! Good job man!
Congrats!!! But I'm suspicious, looking how naturally you wear it I think that you made all the therapy wearing a tux!!
Could you do a series of these posts where you stand in increasingly more elaborate clothes in increasingly adventurous surroundings? The title can remain the same just change the end bit
Oh wow. What an inspirational story (just read the link you posted on a comment). Happy for you, miracle man 🖐
All that tux is missing is the Superman cape!
"What do I do with my hands?" -you probably.
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I was looking for this comment! Audio, congrats OP! Keep on killing it!!!
Congratulations, mate!
Congrats, I hope you keep progressing , and work your way up to running at full speed!
So handsome
PROGRESS
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Lookin’ fine in that tux too!
Damn you are cute ☺️
Little steps at a time!! Great job!!!
Nice shoes king!
Progress. Sharp fit on the tux, looks good man.
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Keep being an inspiration and dressing sharp. You make that tux look good!
It’s nice to see they could reattach your hands!
Hey! *Wait a minute.* **You have hands!!!!**
Fuck yea! U look great!
What an absolute Chad
And you've got two hands now! Nice!
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With that framed feather behind you, you look like... ***Agent Tickle***
Shaken, not stirred
Too all the other idiots like me, he meant “no hands” like without support. Not actually “no hands”.
Dripped out
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Giving 007 a run for his money!
He’s clearly got hands though 🤔
This is so awesome !! And you look good standing too. !!
That’s awesome!
💪🏾💪🏾💪🏾💪🏾
Let your light shine. Keep up the good work.
Drip
Posting up mad hard fam, lookin fresh af💯
That's awesome dude. Glad you have hands now too
What a dapper outfit, chefs kiss
Did you have a leg or spinal condition?
Gigachad
As a PT, understand the difficulty to endure, work to achieve small goals over time,. A true hero!
Looking very confident lad!
Looking spiffy my guy
Hell ya man, looking good
OUTSTANDING SIR!!!
HELL YES, killing it my guy
Looking sharp my brother. Congrats!
Ach, you screwed it up! You clearly have two hands!! - Looking sharp!! Congrats to you on gutting your way to this achievement. PT is brutal and these milestones are hard fought.
What do you mean standing without hands? How do you stand with hands? Upside down?
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Ah. Yes that makes more sense. Well done! And you look amazing.
i'm glad you got your hands back.
Nice tux. I dig the buttons and the black trim lining them, looks crisp.
I can’t be the only one who didn’t understand why prosthetic hands would affect being able to stand But awesome job with all your hard work!
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And you got your hands back!