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submitted by PurposefulPorpoise21 to dragondictation

[Table] IamA 30-year-old quadriplegic after breaking my neck 11 years ago. AMA!

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Date: 2014-04-25
Link to submission (Has self-text)
Questions Answers
This might be a silly question, but in your dreams are you moving, running, walking, all those things? Actually, yes. In most of my dreams I am still upright and walking. Every now and then I will have a dream where I am sitting in my chair, but even then I'm not necessarily restricted to it. I recall one dream a long time ago where I was driving around in my chair, but then I encountered some steps. I got up and walked since there was no way around. I'm not quite sure what that means.
Do you have any sort of sex? If so, how? Any feeling whatsoever in terms of an orgasm, even if you can't feel it physically on your organ? I have all kinds of sex.
Ha ha… Just thought that was the best way to answer it. Anyway, to answer your question without fully turning this into a NSFW thread, sex is still possible for someone in my situation. For me, it takes a little more assistance from the woman and a little more creativity. Even if it doesn't feel exactly the same on my organ that doesn't mean it's not fun.
Have you seen the movie The Sessions? I have not. The IMDb summary sounds… Interesting.
Fantastic answer. All kinds of sex is the way to be! Do you still have any sensation? Or is it all mental? Thanks for doing this man! Great AMA. In general, I have no normal sensation below my level of injury (my shoulders). However, on my left side I have some dull sensation all the way to my toes, and I have sensation down to my hips on the right side.
What is something relatively simple you wish was invented to help you? Something to help me: Driving modifications that don't cost a fortune. For my level of injury, driving controls can cost $50k. That's on top of a modified van that already costs $40k-$50k.
Something for fun: Rocket-powered wheelchairs. I want to go fast.
How has it affected the relationship with people that you knew before the accident? Do they treat you any differently? Great question. I had just finished my first semester in college when I was injured. It was still close enough to high school that I was in good contact with my high school friends, but I also had a lot of new college friends. Some of the people that I knew before my injury became less communicative. Maybe they didn't know how to react to such a huge change. The majority of my friends were amazingly supportive. I really felt like they understood that my personality hadn't changed.
If anything, the injury helped me find out who my best friends were, and it served to strengthen our friendships even more.
I've noticed that most people drift apart from old high school friends (just like I did). There is only hand full of high school friends that I still hang out with all the time. So it might not be due to your injury, everyone moves on to different things after high school. I've thought about this a lot too. Many of the high school friends that I don't hear from anymore is mostly due to the natural drifting apart that happens when high school ends.
I hope this doesn't sound ignorant, but I know so little about this sort of thing. How do you perform certain necessary daily tasks that typically require large body movement? E.g., getting into/out of bed, showering, eating. Do you have personal assistance or do you use technology? I have personal care assistants to help me every morning and night. They physically assist me with getting in and out of bed, stretching, hygiene/showering, and dressing. At first it seemed like a real invasion of privacy, but you get used to it.
That's what I thought, but I wasn't sure. Thanks for your response. Also, I think it's great that you got your PhD and landed what sounds like an awesome job. Nice username BTW!
At first it seemed like a real invasion of privacy. Or you could just consider yourself royalty. The elite of Europe never used to bathe or dress themselves. That was for peasants! Edit: 450+ internet points? where is my gold, peasants!! Someone guilde me! I feel like Eddie Murphy in Coming to America sometimes.
The royal penis is clean! My thought exactly.
Can you still feel pain or discomfort from a stomach ache or intestinal pain? If you ate too much in one sitting could your feel that you're full? Not necessarily. Sometimes I think I feel stomach discomfort through what's called "Autonomic Dysreflexia". I get a rise in blood pressure due to anything that is irritating my body below my level of injury (where I can feel). It is something that would otherwise cause pain, but my blood pressure goes up instead which causes flushness feeling in the face and sweatiness.
Fuck dysreflexia! Fuck it right in the ass! I'm a C6/7, and at the moment I seem to be having trouble with sediment in my urine. This often causes my supra pubic catheter to block, which in turn leads to dysreflexia. I get the flushes, the sweats and the tingles, followed by the worst morherfucking headache I have ever felt! It's had me in tears on more that one occasion. Feels like someone's squeezing my brain in a vice. You didn't mention the headaches. Does this mean you don't experience them? If so, you're a lucky son of a bitch... Yeah, I should have mentioned that for completeness, but I don't get headaches from dysreflexia. I know… I count my blessings.
What is your job, exactly and what do you do for fun? I work for a large company (10,000+ employees), and I am a research engineer. Luckily, my job can be done mostly with computers. Technology has many amazing adaptations to let people with practically any disability have access.
A perk of being in a wheelchair is getting handicap access to venues and events. I love going to movies and concerts. I was an adrenaline junkie before my injury, so I still like watching skiing, mountain biking, etc.
Have do you manipulate the computers?; if you don't mind me asking. I have enough movement in my arms to use a trackball. It took a lot of practice at the beginning, but it's a lot easier than trying to get to the left and right click buttons of a mouse.
My friend is wheel chair bound, and one summer he had this great idea of tying his chair to a ATV and other dangerous things for "summer fun". I can slowly type on a keyboard with one of my knuckles, but I usually use voice software for typing. I've been using Dragon NaturallySpeaking for the last 11 years.
I use MouseKeys on my wireless keyboard for all mouse functions. I find it easiefaster than a trackball mouse and/or Dragon. I haven't heard of that before. How does it work? Do you press specific keys on your keyboard for up, down, left, right, left click, right-click, etc.?
Hoping you see this. One of my best friends in high school recently suffered an accident similar to yours about three months ago, he was snowboarding and broke his C7 after landing wrong. He has control of his arms but I believe he is still classified as quadrapaligic(sp). I'm going back home this summer and I'm hoping to see him frequently, the problem is that we were extremely active in our friendship together. Always hiking, swimming, biking or whatever. I'm not concerned that our friendship will suffer because he is no longer able to do these things, we are friends because he's a cool guy not because I needed a hiking buddy, BUT I'm genuinely nervous to see him because I'm not sure how to treat him. Should I ignore the wheelchair and pretend like nothing changed? Do I treat him carefully and try to cater to what he needs? I feel like if I completely ignore it he'll feel like I want to go back to "normal" and I definitely don't want him to feel that way. Can you give me some advice on how I can be the best friend I can be to him? TL;DR: My good friend was paralyzed recently and I haven't seen him since before it happened. What is the best way act around him to make him feel comfortable when I go back home for summer? My best suggestion would be that you shouldn't think about it too much! It sounds like he should be far enough from his injury that you don't have to worry about treating him to gingerly. If you guys are joking around, don't be afraid to give him a slap on the shoulder, or anything that may have been the norm before he was injured. I'm sure he's considered the fact that many of his favorite activities are now impossible, but you might think about asking him whether he's looked into modified forms of the same activities. He has a low enough injury that he might get into wheelchair biking. Or maybe find accessible parks to go hiking in. He will definitely want to stay active, so he'll enjoy looking into ways that he can still do that!
I have a church friend with the same chair and condition. Why does he sometimes tilt the chair back for a little while and then straighten it again? You can imagine sitting in a seat (In a movie theater, church, etc.) for a lengthy period of time. You start the need to shift side to side because you get uncomfortable. Your skin is telling you that you've been sitting in one spot too long, and you need to shift your weight. As a quadriplegic with limited arm mobility, I can't physically move my weight to get the same shifting. I don't feel that I need to shift my weight, but tilting back every 30 minutes ensures that I don't get pressure sores by sitting upright for too long.
Could anyone elaborate on what the sexual activity/feeling is like? I always hear they can have sex "in their own way" or something vague like that, but i'm never quite sure what that means. Also, can we not say "organ"? it's weird. For me, it feels like I have 10 condoms on. You might say, "Oh, that sucks!" But come on, you know sex would still be exciting.
Do you think that being disabled has in any way helped you achieve what you have? For example: would the education you received have been as accessible if you hadn't suffered your injury? Thanks for the compliment. In my experience, the education I received wasn't necessarily only open to me because of my disability. However, I was fortunate enough to receive a scholarship when I returned to college. The scholarship was specifically for disabled students. My college didn't offer very many academic scholarships, so I wouldn't have received a scholarship it wasn't for my injury.
Again, please do not take that the wrong way, I'm just genuinely curious! I do think that my injury helps point out skills that would have gone unnoticed otherwise.
I hope this isn't a stupid question but seeing as you said you've had some neurological recovery, do you have any control of your hands? How do you use a computer? Good question. Immediately after my injury, I had no movement of my arms. I could just shrug my shoulders. When I was pushed around in a wheelchair during the first week or two, I would need help repositioning my arm if it fell off the side of the arm rest. I didn't have the strength to lift my hand back to the armrest. I regained mobility mostly in the first two years after my injury. I now have use of my deltoids (shoulders), biceps, and my wrist extensors. I can't move my fingers at all. The hands and triceps run from nerves that are the lowest in the cervical region (C7-T1).
As someone who loves skiing, can you describe your accident more? How could you have prevented it? Don't let my injury stop you from skiing! My injury was definitely a fluke, and there probably wasn't much I could have done to avoid it.
Something that's always in the back of my mind while racing down the slopes is what could happen if I fell. I would have classified myself as a moderately expert skier. I could ski down any run, though it wasn't always graceful. A ski run wasn't fun unless it was deep and fast. On this particular day, my friend and I were skiing through the trees to get some powder (skier gold). We neared the bottom of the run, so we had to hop back on the regular ski run to get back to the ski lift. It was a blue/intermediate run, so it was straight and moderately flat. There were a few "lips" where we could get a few inches of air. It was my first run of the season, and before I knew it, I had tumbled forward and my head was between the snow and my chest. I think that my legs were weak from not being fully into ski season yet. When I stopped sliding along the ground, I was on my side and couldn't move anything.
Any plans to ski again? (Monoski/sitski)? Now I can't stand cold weather. Reduced circulation is a consequence of spinal cord injuries. Not only is sitskiing completely different, but the cold weather would make the fairly miserable.
This might sound stupid/ignorant (so my apologies), but how are you answering this AMA? Do you mean how am I physically typing these answers? I use voice software for typing, especially when writing in full sentences.
Do you find that having to speak to type makes your every day chit chat more articulate and well pronounced? There's no room for an "um" or an "uhhh" with this kind of typing, is there? I bet you're good at giving speeches... I find that I don't generally type in long, flowing sentences. Instead of making my every day chitchat more articulate, I think that my speaking for the voice software has become more casual. I know exactly how I need to talk to get the proper enunciation, and it's not quite as robotic as most people think.
How do you correct typos with that software? Dragon has certain commands that it's always listening for. If I say "I want to go to the store too", and it types out "I want to go to the store to", I say, "Correct to", he gives me three choices for the different instances of "to", I tell it which one it wants (Choose 3), it shows me a list of other options for what it heard, and I choose the correction that spells "too". It sounds clunky when written out.
Do you have an SO? If so, did you meet before or after the accident? If not, what is dating like? I don't have an SO at the moment. I dated on and off through school. I definitely found it difficult because my self-confidence and "machismo" before my injury was already sub-average, so I found it difficult to ask women out. Though many women might not care, it's hard not to be self-conscious about things. Sometimes it can also be difficult to come up with creative dates that are both fun and doable for both of us.
Nonetheless, I do date because it would be nice to find someone to settle down and have children with.
Are the people that you date able bodied? Yes, I have always dated able-bodied women. Many things get a lot harder if both people are in a wheelchair!
Well, i can see that. Would be really strange having one or two nurses around helping things get done between 2 quads. Wasn't there a Family Guy with Stephen Hawking in bed with a woman who was also wheelchair-bound?
How were the hospital bills? Did your health insurance help at all? The initial bills? They were outrageous. I think the total cost of the full year after my injury would have been about $1 million if I had no insurance. Luckily, I did have insurance! Yes, insurance helped immensely.
If you could be fixed, would want to be? I would want to be "fixed" there was no risk of serious complications or making my injury worse. Even if there was a way to just recover the use of my hands and improve the strength in my arms, I could be more independent and be more productive.
Is so, what do think of those who wouldn't? To each their own. Some people feel like they have become better people after a serious injury, and might not want to recover fully. Though IMO, you'd be crazy to rather stay in a wheelchair if there's no risk in getting fixed.
What are your qualifications in? Both my degrees are in chemical engineering.
What was the first thought that crossed your mind when you realised the seriousness of your injury? Thanks for your kind words! Honestly, I didn't realize how serious the injury was for a while. I broke my neck on a ski mountain, and it wasn't until I was in a helicopter on the way to the city that I realized that my sensation and movement might not come back. In the hospital all I could think about was how much my head hurt because they had me strapped down on a backboard with a neck brace. When the doctors took me into surgery to stabilize my spine, I remember telling my parents, "I'd give you a thumbs up if I could!"
On a side note, your courage and will to live is way way more than admirable! The point of all of these anecdotes is that I never really had a sudden moment of realization that I would never walk again. It hit me gradually.
Is there anything that's better or easier about your life now that you're a quadriplegic? I hope that doesn't sound insensitive! Getting up in the morning is a whole lot easier. Instead of having to wake up to a nagging alarm clock and roll out of bed, my personal care attendant/caregiver shows up in the morning and stretches my legs for 20 minutes before moving on to getting me dressed and moved into my wheelchair. If it weren't for the fact that I can't physically do these things for myself, you could definitely call me lazy.
What technologies in the area of helping people with your injuries excite you? Do you keep up to date on them and what is happening in that sector? Google! Google cars and Google glass are both interesting to me. A lot of wearable technology that interfaces with smartphones can be great for someone like me.
Can you tell us a bit about your mental recovery, ie. how it impacted you life, did you struggle with depression etc? My mindset has always been something along the lines of "just go with it". I was fortunate to have just started college when my injury happened. I took a semester off to go through three months of spinal cord injury rehab, and then I returned to school. I hadn't made a big deal out of it, and I didn't preach about how it was my goal to graduate with my bachelors degree. It was just that returning to school made the most sense! I enjoyed the program and my friends, so why wouldn't I want to return back? In the long run, I realized that returning to school really was best because it got me back out of my parents house and it helped me feel like a "real person". The school was not used to dealing with people in wheelchairs, much less quadriplegics. So every modification that was made for me was new to everyone. So I never got "babied" by being given excessive adaptation.
Sorry, I've babbled. Basically, being with friends who supported me and doing something that I cared about helped me to move on. I never had a chance to wallow in self-pity because I was still living my life.
What sort of impact, negative or positive, has this had on your mental health? I don't imagine it's had any net positive impact on mental health compared to before my injury. I definitely have bouts with low levels of positivity when things aren't going my way, and everyone probably has similar feelings occasionally. Sometimes it just feels like you're in a rut, or maybe that you're never going to accomplish a specific task.
Tl;dr I generally try to stay positive, but it's hard to avoid being down every now and then.
Who would you count among the most inspirational figures in your life? Did you find that these were different before and after the accident? By this I mean, did you find yourself looking up to different people for different reasons after you were injured? The most inspirational people are the ones around me. My family has been extremely supportive, and they are all successful in their own ways. My parents and my siblings continue to inspire me to stay positive and live the fullest life possible.
Now, on to my question: can you describe the "feeling" of paralysis when trying to control a paralyzed limb? When you try to flex your left foot upwards, what happens within the confines of your own body? Can you "feel" the foot initialize, but it fails to acknowledge the command? Is the disconnection between the foot and your motor cortex so profound now, that it is difficult for you to even conceptualize "how" to move the foot at this point (analogous to me trying to "bend" my hair)? When I try to move any body parts that I don't have the ability to move any longer, I feel a "buzzing". When I try to move either my legs or feet, the buzzing feels like pins and needles, except not so irritating. It's almost as if my legs are saying, "BZZZ. Incorrect input. Please try again later."
Thanks for doing this AMA, and there are those of us who are AB who are aware of your suffering, and trying to help in our own small way. You are not forgotten. With other body parts like my fingers, abs, and others, I just feel nothing when I try to move them. If you live somewhere that it's cold in the winter, it's like if your hands ever got so cold that you couldn't wiggle your fingers. It happened to me one time when I was skiing (before my injury). Your fingers are numb, and even if your fingers were moving, you wouldn't be able to tell.
Who's your favourite band? Do you still headbang if it's a heavy one? Heck yes. I liked rock when I was growing up. Nirvana, Pearl Jam, Incubus, Linkin Park. And yes, I still head bang to worthy songs since it's something that I can still be perfectly :-)
I know many people develop a dark sense of humor (or, more aptly, apply their sense of humor to their own dark situations) over time. Have you ever thrown people off by joking about your condition, or even offended someone (like someone else in the physical rehab center, etc.)? Can you think of the darkest or most unexpected joke you've made? I definitely make dark jokes at my own expense. Sometimes it helps people get more comfortable, and other times it has the exact opposite effect. I can't think of my darkest joke.
Who takes care of you, such as clothing, cooking, even using the restroom? Is it a family member, a hired nurse, a friend? Is it ever awkward during times that can be seen as personal? I have hired caregivers who help me with all of those personal tasks. Some of my family has helped in the past, though some of the especially personal tasks are extremely awkward with a family member. There's always a little bit of awkwardness when I'm training a new caregiver, but you get used to it after a while.
The parasympathetic fibres responsible for sexual arousal originate from S2-S4. Does this mean you cannot be sexually aroused? Or are you able to achieve an erection with the help of medication? If you can achieve an erection, are you able to orgasm? I can definitely still be sexually aroused… Both mentally and physically. However, the mental and physical arousal are very separate now. I don't achieve an erection by mental stimulation, but both physical stimulation and medication get the job done. And yes, I can orgasm as well.
Both erections and orgasms are very individual to each person with a spinal cord injury.
Is it something that you are comfortable joking about to some extent? is it something you are comfortable with others joking about to some extent? (granted it isnt mean spirited.) (i ask because i had a friend in a wheel chair from a car accident where he fell asleep at the wheel. when you were getting to know him, the conversation would eventually get to "so what happened" he would tell about the accident and then he would fake kind of a sad face and say "the accident changed my life, i always wanted to be a stand up comedian but that dream went right out the windshield"... ) thoughts? I am always open to joking about my injury. As long as the person in the chair has a sense of humor and you don't overdo it, go for it!
"people stare rudely / assume I need special help; wish they would treat me the same" I personally always find, when I encounter someone with a disability,that I am self- conscious that I am doing one of these 2 things. By not wanting to stare, I probably avoid eye contact more than I do when passing an able- bodied stranger. I am also not sure when to help with a door, Etc. In your situation, do you have a preferred method of how strangers interact with you / offer to help, that you would recommend? I've had both of the situations that you mentioned to me. The more common occurrence is when people assume I need special help or speak to me like a child. They crouch down low, raise the volume and pitch of their voice, and speak slowly. They are always shocked when I respond in full sentences… Ha ha.
You're so amazingly positive. i wonder if you ever went through a dark phase? did you ever consider ending your life or suffer crippling depression or anything of that nature? thanks for a great AMA. I never quite made it to that level of depression. I've definitely had a lot of days where I wondered why this injury happened to me. Especially in the first year after my injury. You start to realize that following that line of questioning never reaches a satisfying answer so there's no use in bothering with it. On occasion I still wish that I could do the activities that I used to do, but I bet there are plenty of people that wish they became an NFL pro quarterback. It's just not in the cards, and life goes on!
In 6 months time I'm going to be a doctor. What could I do to be better for you when I see you? The best doctors that I've had have been the ones who treat me like a normal person. Have open, honest conversations with your patients, and you'll be great!
How do you deal with pressure sores? Is shifting your weight constantly on your mind? Yes, I'm always thinking about how long it's been since I last tilted backward to shift my weight. I try to stick to doing it every 30 minutes. I've never had a serious pressure sore on my backside, but I had one on my heel about two years ago (my foot slipped halfway out of my shoe without me noticing). I recognize how nasty pressure sores can get and how quickly they can get out of hand. I avoid getting one of my tailbone at all costs.
Have you heard about this new medical breakthrough? Do you believe that sometime in the future technology might allow you to walk again? Yeah, I've heard about this. I've been trying to find out more information, but I run out of time when I start looking. There is a lot of very interesting research going on with respect to spinal cord injuries cures, and hopefully they figure it out someday!
What did you do for your thirtieth b-day? What kind of music/bands do you listen to? IMO, there's nothing I can say to inspire confidence in others, but I suggest that you make goals. If there is something that you'd like to accomplish, think of the steps that you'll have to take to reach that goal, and make a plan or schedule that will help you do that. Overthinking will get you nowhere. As cliché as it sounds, being positive is a choice! My 30th birthday was amazing. I planned to spend time with my brother and sister who were flying in from out of state. They surprised me by arranging for other friends from high school, undergrad, and grad school to also fly in and spend the weekend. It was a great way to reflect on my 20s while looking forward at the same time.
What do you use on a daily basis that you couldn't see living without? My wheelchair and my computer make everyday life pretty livable. When either one breaks down, I feel lost.
To what extent do you rely on others for help? Also, thanks for doing this AMA. My cousin recently fell from the second story of a building and is wheelchair bound permanently. Any words on how you coped with your accident would also be of help to him. Thanks again. I do rely on others a fair amount. I have help every morning and evening with personal things, and I get occasional help throughout the day with smaller things. I've mentioned this a few times here already, but I don't have a car that I can physically drive, so I need to have someone drive with me whenever I go somewhere.
All the best to you and your cousin. I hope that he can find something that makes him happy after his injury. The most neurological recovery generally happens within the first two years, so help him stay positive! Getting involved in any activities can help with coping. This can either be taking classes, being involved in community groups, or even going to the movies. Make sure that he doesn't retract from being out and about.
You ever see the French film "The Intouchables"? One of my favorite movies EVER! I usually don't like foreign movies because I find reading subtitles distracting, but this movie was really entertaining and had a great story. Knowing that it's a true story makes it even better.
Could stem cells repair the damage to your spine? That's what a lot of researchers are working on. If done incorrectly, it also has the potential to form the wrong kind of cells and cause more pain.
Have you ever been to /futurology ? If not check it out. Constant updated on exoskeleton suits for the disabled and all other cool shit the future holds. Nice!
Were you wearing a helmet, and if not would a helmet have prevented your injury? I was not wearing a helmet. My neurologist actually said that a helmet would have made the spinal cord damage even worse. Luckily I avoided any sort of brain injury, though.
Yeah its definitely gotta be some motivational shit. Especially if this was some sort of Upworthy video.
Just not in her legs. I love reddit for all the dark humor.
Attitude is important here. Your friends might be self-defeating. OP seems like a cool guy. Attitude and confidence are definitely the most important. Even OP has some trouble sometimes.
Show him this AMA. This guy is so amazingly upbeat and positive in light of what many would consider a life-ending travesty that your friend will be hard pressed not to reevaluate his own outlook. Thanks! While showing your friend examples of people who have been successful won't necessarily give him a roadmap for his own success, it could help to show him that he will still be able to do something that he enjoys. And even though you can give him his answers, it's great that you're still a supportive friend. He deserves a grievance period, but it will also be important for him to move on at some point.
Last updated: 2014-04-29 10:50 UTC
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