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IAmA guy who broke his spine and doesn't walk again. AMA
I just saw that the AmA about the guy who broke his spine and walks again (http://redd.it/1bbt3r) seems to interest a lot of people, so I thought it might be
a good opportunity to collect Karmainteresting to share an other point of view.I broke my neck in August 2011 (C 5/6) when I jumped on a bank of sand in the Danube. The result is a traumatic spinal core injury, which lead to a complete paralysis of most parts of my body. This means now I am only able to move/feel my head, my shoulders and parts of my arms/hands. Most likely for the rest of my life.
I am typing this with the knuckle of my little finger. AMA
edit:sorry, I am now back on my computer and trying to answer all the questions. Normally I am dictating most of my text. But I am German. I tried switching Siri to English, but I guess my accent is so bad that it doesn't really work, hehe. JAJA KRCHKRCH
edit2: proof http://imgur.com/a5sRaxT (home alone right now, but the mods seem to have removed the post so this crappy pic is the best I could do!)
edit3: http://imgur.com/IE0hHhX a pic of my hands. cant move the fingers, but I am able to hold/lift stuff, because my fingers close when I bend my wrist
edit4: Because you are so nice and curious I uploaded a video which is really precious to me! I guess it helps you guys to see me in action. my friends made it when they surprised me at my homecoming: http://youtu.be/p74xTxO-2Po
Captain_Tetraplegic716 karma
yes I am never in my wheelchair in my dreams, but "disabled" most of the time. It is really weird. eg I am sitting on the toilet an peeing. Suddenly I remember that I am not able to pee, because I am paralyzed and really confused. or I am walking/ standing at the airport and realizing that I forgot my wheelchair
stuff like that...
Captain_Tetraplegic621 karma
yes. not being able to walk is one of my least problems. When you see someone In a wheelchair you always think that's the main thing. but the organs are paralyzed, too. the blatter is a huge bitch and the bowel is super stupid
Time_for_Stories481 karma
Stupid bowels, always thinking they're the shit. Fuck you bowels!
Captain_Tetraplegic262 karma
but on the upside it can be trained. You usually get a certain rythm you can rely on
Captain_Tetraplegic410 karma
the autonomic nervous system reacts when the blatter is full. heat, goosebumps,..
when it comes to having a shit, I dont recognize it until I smell the mess
alias77769 karma
Wait so how do you urinate or have a bowel movement? We're honestly curious, don't be embarrassed.
Captain_Tetraplegic247 karma
http://imgur.com/wXvvPZi there are many ways. for me it works like this you connect the catheter with a bag and then you push the whole green thing in your penis until it's in your blatter. gravity does the rest
I empty my bowel once a day with the help of laxative so I can be relativly sure to be safe until the next day. But accidents happen and when you around babies and it starts to smell you just hope it wasnt you
mysterybkk16 karma
ok, so i'm gonna go into some really graphic territory here.... how about diarrhea then? sometimes i get it quite bad, to the point that i'm shitting liquid 8 times in a day. what exactly would happen to you in a case like that? do you have to wear adult diapers sometimes just to be safe?
jxj2442 karma
Are you familiar with the bladder and bowel control available through Functional Electrical Stimulation (FES)?
FES is a lot more than just extremity control, though it is quite useful for some enhanced upper function (e.g., shoulder joystick that can put the hand into a variety of useful positions).
And there is also diaphragm stimulus for pacing and depth.
DeckerR13 karma
So how does your body function if your organs are paralyzed? For instance if your kidneys were paralyzed how does your body regulate waste?
haystackrat44 karma
The organs function separately. I believe what OP means about his organs being paralyzed is that he has no conscious control over them, eg. he can't decide to take a dump; his body just does it, same for his bladder.
Captain_Tetraplegic61 karma
yes and no. eg the urethral sphincter doesnt open anymore
same with parts of the muscles you need to breathe
fredspipa65 karma
Are you likely to regain the full use of your fingers?
There's many keyboard applications for touch screens that could really help with typing with a knuckle, like Swype.
I 'know' that if I was paralyzed, I'd do anything in my power to maintain my ability to interact with computers. Maybe my priorities is off, but losing that ability would devastate me more than not being able to walk.
EDIT: patronizing text removed.
Captain_Tetraplegic330 karma
No.
Swype looks nice, thanks.
Please people stop being concerned about being insensitive! This ama is made for open thougts and questions. I have a fb wall full of sensitive get well wishes!
MaximusPower80 karma
Go fuck off.
Just kidding.
Does the sympathy get old like sometimes you just want people to shut up about it already?
Captain_Tetraplegic64 karma
pitty got old pretty fast. At least for me. With sympathy it depends on the way it is expressed. I guess everyone is open for a honest compliment!
YKML76 karma
I have a similar injury from July 2012 and in the vast majority of my dreams I am unchanged. Sometimes certain aspects of life since then appear in dreams. In one I had still broken my neck, but I had regained all normal abilities.
Captain_Tetraplegic79 karma
yeah, most of the people I met told me the same! Even after many years
Captain_Tetraplegic1111 karma
I don't mind at all. I think this is what the ama is for I dont need it for my vainity.
Yes I have sex! It is really weird!
Hard to explain, here is a video I made: http://www.youtube.com/watch?v=oHg5SJYRHA0
Captain_Tetraplegic105 karma
ok I owe you a proper answer to this question. the penis works because it is not a muscle controlled by the brain. I easily get an erection when someone touches my dick (yes it was embarrassing in the hospital). With Viagra the erection stays stable (tbh better than before) so technically the penetration works.
I am of course lying on my back. I am able to touch her, but as I cannot open my hand it is a bit weird. Just try caressing someone with your hands closed.
In general it feels good to be close and for me it is super important to be able to please her. Kissing is awesome and her licking my ear really turns me on.
But I dont feel my dick at all. This is really weird and of course a problem for her. If I don't see it I simply don't know if we are doing it. There is a sort of climax, my muscles contract, but it's not a great orgasm.
I hope this helps...
seashanty57 karma
If he can't control his bladder or bowel, I don't think he can have sex.
A related question though; how do you relieve sexual tension?
Captain_Tetraplegic324 karma
I can control it. Most of the time at least. I didnt shit my pants for a couple of month now, mama is really proud!
But seriously: my biggest fear ist accidently starting to pee when receiving a blow job
BoyFallDown2 karma
I deleted my response. I thought you had bailed from the thread, I didn't mean to hijack your question.
Captain_Tetraplegic4 karma
you can add your own opinion! I guess for you it is a lot different
organizedmutiny243 karma
I can't imagine getting news that I probably wouldn't be able to walk again.
What was it like when you first found out and how has it been adjusting?
Captain_Tetraplegic468 karma
I was alone in an isolated room at the ICU and the doctor just explained it in two sentences and left. It was the worst moment of my life.
Adjusting? mh, I guess humans are designed to get used to everything...
Captain_Tetraplegic392 karma
something like: "I don't know what they told you before, but your chances of winning the lottery are higher than being able to walk again. we will start the surgery soon."
P-2626135 karma
Are you greatfull the Dr was honest and direct, or did the approach/bluntness make it harder to cope with.
Captain_Tetraplegic328 karma
To be honest I don't know. He was a surgeon at the ICU and I guess Scrubs tought us about how surgeons are, hehe
fuck_they_found_me36 karma
Have you been able to adjust to your job? did you have to leave?
Captain_Tetraplegic93 karma
I am a freelance filmmaker. I was in the hospital/rehab for over a year. I am back in my new home for eight months now. I am slowly starting to work again, But I am still far away from earning money again. eg I cannot shoot a commercial
AmericanMustache16 karma
Could you go into more detail about this please? I find this very interesting. I can't imagine being strong enough to deal with news like this.
Captain_Tetraplegic72 karma
Normally you would talk to people about this, but you are not able to talk for the first weeks. So you have to deal with it on your own.
But to be honest, you get so much medication, that your brain doesn't work properly anyways. Propofol...
For me it got hard later...
Captain_Tetraplegic25 karma
You seem like a great guy. You are right, being scared is bad. I have to admit that I think too much about possible obstacles!
Captain_Tetraplegic218 karma
hehe, I cant get used to typos myself. sometimes I am writing an email for half an hour.
Captain_Tetraplegic223 karma
heh I know :/
for this ama I had to lower my standards, my arm already hurts!
CrazyBoxLady83 karma
I don't know how long you've been paralyzed, and I don't want to give you false hope. However, a close family friend was paralyzed from the neck down when he was t-boned by a truck running a red light. He has a live-in caretaker and is confined to his wheelchair. This happened almost 20 years ago.
Initially, he couldn't even move his head, he could only speak (slurred), eat, and blink on his own. Today, he has full use of his head, shoulders, arms, and almost normal use of his hands. Even as little as 5 years ago, he could only hold something if you put it in his hands and closed his fingers around it. Now he can lift objects almost over his head, and feed himself.
Not to say that you're hopeless, but don't ever give up. It might take 20 years, but you could realistically see improvement in your motor functions. Good luck :)
Captain_Tetraplegic200 karma
thanks! Even if the doctors don't give me any hope, I would be lying if I would tell you that I don't believe I will get better.
and there is science...
pawnzz3 karma
So can you use two hands? How are you doing characters like ; and )? Serious question :)
NotUniqueUsername26 karma
The Sticky Keys functionality in Windows that makes us all angry allows you to just press shift and it acts as pressed.
Captain_Tetraplegic32 karma
Mac has the same function. I didnt know it from the beginning and really had a hard time doing smileys with my elbow ;)
2100Furnace122 karma
Does it 'feel' like as if you let your arm fall asleep, or how does it feel to be paralyzed? Cold?
Captain_Tetraplegic240 karma
This is really hard to explain. I don't 'feel' anything real. no sensitivty at all. But a lot of the time it feels exactly like my limbs are asleep. In the beginning this was really hard, because you have the feeling if you just try hard enough you could wake them up.
It is not cold at all. most of the time it feels warm, even when my feet are ice cold. you have to be really careful, eg whren showering the autonomic nervous system is fucked
Captain_Tetraplegic210 karma
yes and no. This is still really weird for me. It changed. Let me try to put it this way: I dont get the urge from my dick like it was before. Which was the main force behind the urge to wank. But sometimes it makes klick in my head and I want to see naked chicks. Yet porn doesn't turn me on at all anymore
percyhiggenbottom91 karma
Sand! I am now adding beaches to my list of places to fear. How big was the fall? Or was it just a freak accident?
Captain_Tetraplegic198 karma
really amazing. They helped me so much. They carry me when there are stairs, cook at my place, drive me around,...
HW9077 karma
With exoskeletons becoming a more viable option to allow people to walk, would you consider getting one and are they demonised in the wheelchair community like cochlear implants are by the deaf community?
Captain_Tetraplegic98 karma
An exoskeleton doesn't make sense at all for me. I would need help to put it on and off, so I would still rely on others.
I dont know what the wheelchair community thinks about that...,
Captain_Tetraplegic158 karma
with help! I have 14 hours of assistance each day. Public transport is pretty good to use with a wheelchar. Stairs arew my arch enemy now!
Iromside86 karma
How would you like to be treated in public. I Always want to aid disabled people in any way possible but don't want to offend them in any way ..DO you like it when people smile at you or do you think its mocking?
Thing like doors and such should I hold them open or allow you to do it youself?
Captain_Tetraplegic223 karma
That is a difficult question. Help is always nice when it is needed. Like holding doors open. I know that it is really difficult to see if you should offer help. so I am never mad at people for asking. Unfortunately a lot of disabled people can be really bitchy.
smiling is always nice. I usually smile first because it helps people
super pro tip. If you talk to me for a little longer try to get down on my level, crouching,.. I really really appreciate that
Captain_Tetraplegic77 karma
eh is this a doctor who thing? I only know this series from what I see on imgur!
Captain_Tetraplegic76 karma
no not at all. I wasnt unconscious. I was confused why I wasnt able to lift my head above the water level and really didnt realize what happened
Homosexual_Panda43 karma
Don't give up hope. Stem cells! I think I heard that at the rate we're going, if it was made legal, total spinal cord fixing is less than two decades away :)
Edit: http://www.medicalnewstoday.com/articles/252982.php. dogs walk again after stem cell treatment
Captain_Tetraplegic92 karma
Yeah I know about this field of research. It looks promising, but the hzuman body is sooo complex
and tbh spinal cord injuries are a small market, not much money to make...
chest_pains19 karma
It IS legal!......In Panama. I don't know how safe it is though and it costs about 15k I believe. But it's something.
http://www.cellmedicine.com/stem-cell-therapy-for-spinal-cord-injury/
Captain_Tetraplegic90 karma
A guy I know went to Panama and came back fucked up. So thanks but I pass ;)
bwoosh37 karma
He came back fucked up? What happened if you don't mind me being super nosey? :P
Captain_Tetraplegic71 karma
brain damage but I think it was a rookie mistake the doctor made
Crabaooke39 karma
Did you lose any friends after the accident? Did they become awkward/uncomfortable around you?
Captain_Tetraplegic77 karma
no not at all. I've heard that it happens a lot. imho if people do this they never were friends
Captain_Tetraplegic88 karma
yes but we came together over a year after the accident. Humour is the key
squatly-3 karma
I have removed this post until proof has been provided, as no answer has been given within 2 hours
Captain_Tetraplegic31 karma
I posted proof now. sorry I didnt see your post earlier bc I was answering all the top questions
nerf_irelia16 karma
Did you have any hobbies before the incident that you can't enjoy now?
Captain_Tetraplegic75 karma
does wanking count?
I guess I am lucky that I wasn't a gifted musician or athlete. Losing this must be hard.
but I miss dancing when I hear music
KillaStorm100011 karma
Can you use an electric wheelchair with the limited usage of your body you still have?
Captain_Tetraplegic9 karma
sure. I am using a normal wheelchair and can drive on my own in my apartment
Ciano10127 karma
What simple task can you not do that people wouldn't think of and you really wish you could?
Captain_Tetraplegic16 karma
popping pimples!
I guess being able to leave the bed/apartment on my own would be awesome!
boogieman1175 karma
After starting the Game of Thrones series, I want to call you Bran for some reason.
jroudle552 karma
When you dream do you still have use of your whole body? I've always been curious about dreams of people who go through life changing experiences such as this.
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