IamA 19-year-old C6 quadriplegic, I received stem cells as part of a study, and I'm looking to curb misconceptions about paralyzed living. AMA!

This might be out of line, but I always wonder. Sex? Does it happen? Can you... Help yourself... So to speak? Or is that just something that's not that important to you?

Not out of line at all. I'm a 19-year-old dude of course it's important to me. It's not the same but it still happens and luckily I have a girlfriend to try it with. The sensation is different and I can only get an erection through touch but I can still have sex. I just started taking Cialis to help get up easier so we'll see how that goes. I've tried to masturbate but I've never reached a climax which kind of sucks. I actually haven't had a full release since the injury so I'm waiting for that moment, should be monumental.

Thanks for doing the AMA, OP. What's your best case scenario for a result from your stem cell treatment?

No problem at all! The stem cell treatment is a phase 1 study and I received very low doses of cells, only 2 million, whereas the endgame is looking to be 100 million. For the most part I'm helping further the research and knowledge of the cells but from what I've seen and what from the researches of seeing I am recovering faster than normal. The only problem is we don't know whether or not I would have done that without the cells so we can't really say the stem cells are doing it all. But best case scenario would be be gaining a lot more motor function than I could have.

What, if anything, is something that well-intentioned people do too often that is inadvertently offensive? For an overly simplistic example, if I hold a door for you, does that make you feel like I think you're helpless?

There really isn't much that I find offensive when someone is trying to help. In the beginning it was very tough to ask for help or receive offered assistance but now I realize that I really need help and if I try to do everything myself all day long I end up exhausted halfway through the day. I don't mind someone help me get the door or picking up something I've dropped or offering to carry my food to my table when in any other circumstance they wouldn't.

Thanks for answering! I sometimes wonder when I try to help someone of I'm actually insulting them. I'm going to pretend they're all you from now on.

No problem! Some people may seem annoyed by it but deep down they will find appreciation in you giving them help.

I have to ask. Pooping. Do you require help? Do you have a colostomy bag? What is it like compared to before your injury?

For me personally I opted out of the colostomy bag as I wanted to keep my body as normal as possible. Basically to poop I do what's called a dil or digital stimulation where I use a stick of sorts to stimulate my rectum and cause my colon to contract and naturally push out the stool. At the moment I need some assistance as I'm just starting to master the process. One of the hardest parts about it is making sure the stool is at the correct consistency. If it's too hard I'm not able to pass the stool with my own stimulation due to the nature of the stick I use. If it's too soft it's just no fun so I have to balance stool softeners and fibers to reach a happy medium.

As compared to before the injury it's really nothing like it was, however, I am starting to regain some control of my bowel muscles and when stimulating as I loosen my rectum I'm able to voluntarily push out some of the stool. That's more of a new development and the one thing that's similar to how it was before.

What piece advice would you give young-adult members of the disabled community as a whole?

My advice would be to forget about the past and not to worry about the future. When you're in an injury like this every single day something new will happen and you are always changing. What happened has happened and you have no idea what can happen in the future. Initially when this injury happened all I could think about was how many things I wouldn't be able to do. Now five months later I'm doing many of those things that I told myself would never happen. Just take on each day and keep your head up, you are your own worst enemy and this fight is 80% mental. You have to have a positive attitude or you're just going to hold yourself back.

Thanks for this AMA!

If anything i say is offensive feel free to shout at me but i'll go ahead.

Recently i was at a Pub Quiz and there was a guy there who was wheel chair bound. I'm not clear on his disability but it looked like he had been their his entire life.

The name he chose for his team was "Rolling Thunder".

I felt really bad for laughing however my question is:

Do you think that having humour towards your condition (wheelchair bound condition) helps you cope with everything?

I'm glad to do it! It's questions exactly like this that I want to answer. For me at least I do try and find humor in it now. Whether it be the simple 'let's roll' or poking fun at the fact that I can't feel much at all and all kind of helps me relax a bit and ease into the injury. Although I can't speak for everybody, I'm sure there are some people out there that are very bitter about their situation and would probably get pretty upset about comments like that.

Have you ever experienced unfair treatment because of your disability?

As of now I have not. Everyone I've encountered has been helpful where they can be. I do get looks and stares but it's just something people aren't used to. If anything I get a bit better treatment than before.

Can you tell us more about the accident that caused your injury?

Of course. It was two days after I finished my first year of college at WPI. I was hanging out with some friends at a park and I decided to climb up the tree with a friend. We were about to get out and she said we should go the way we climbed up but I thought sliding off the branch I was sitting on and swing into the ground by grabbing onto another one would be a good idea. So I tried it but unfortunately my momentum swung me out so far that I ended up being horizontal to the ground and my hands slipped off of the branch. At that point I basically fell to the ground landing on my back and neck. The fall forced my C-5 vertebrae into my C6 vertebrae causing it to fracture in 2. One of the halves was forced into my spinal cord and compressed it. Here's a picture: http://i.imgur.com/P4q1qah.jpg (yes it's from snapchat)

What's your ASIA classification?

My ASIA classification has actually changed quite a bit. Initially I was classified as an ASIA A complete but now I am an ASIA C incomplete. Which is fantastic news.

That is great a jump from A to C its uncommon and fantastic to hear.

Yeah it was great news and everyone including myself are very excited to see how I may continue to develop.

Do you have the necessary modifications to drive?

At the moment I do not have a vehicle but we are looking into trying to get one very soon equipped with power doors, power ramp, and the necessary driving modification. I need to take a course to recertify my drivers license and learn how to drive with the modifications but that should be fairly easy.

Well you are fortunate to be at c6 rather than above c5. With training, modification and adaptive equipment you can live completely independent. Best of luck to you and keep on working hard.

Thank you very much and yes that is the goal.

What is the most common misconception that you'd like to clarify?

I feel like the most common misconception is that no injury is the same and there are so many different levels of injuries that you cannot just say a quadriplegic cant do anything or that they are the same as a paraplegic. If you damage the spinal cord C1 to C4 you pretty much can't move anything more than your head and are left needing a large amount of assistance. C5 to C8 injuries provide you with much more motor function including the use of your shoulders and arms and you have a much greater potential of living completely independently. Once you get into the thoracic region the tables turned completely. This is where you become a paraplegic and you have much more control of your upper body, full use of your hands, and require a lot less therapy to reach a stable point.

Thank you for that information. I can see how those misconceptions come about from how you've responded. I thank you for your time.

Thank you for the question. Even on Reddit I've read comments where people compare sleep paralysis to being a paraplegic and all I can think is how far from the truth that really is. Even been a quadriplegic on most levels is nothing like sleep paralysis where you cannot move at all. Only the highest level cervical injuries where you can't move anything below the neck are comparable to sleep paralysis.

Who is your favorite pornstar?

I'd say it's probably Remy Lacroix but I don't really watch porn for the actors specifically.

Would you consider yourself an ass man?

Yes.

Did your relationships with other people change after your accident??. Did it become strained?. Are people sympathetic to you?. And how did you mentally cope up with such a huge physical damage. I am sorry if I asked too many questins. I am really curious though.

The one thing that's changed about relationships is that some people don't know how to approach me anymore or act around me. I try to alleviate as much of the misconceptions and make them feel as comfortable as possible but it's still not exactly the same. People are definitely sympathetic and I don't feel that many relationships have been strained other than the fact that I haven't been able to see a lot of my friends as much as I wish I could.

Coping with this injury is probably the hardest part about it. The thing that helped me the most was just talking with other patients around my age also in the same shoes as me. Just being able to shoot the ship about all the crap we have to deal with and realize that were not alone in this helped a lot.

And don't worry at all about the questions, that's why I'm here.

Hey man! I literally just read every single blog post from the bottom up. Though an unfortunate situation, from the 3rd person it seems very interesting to re learn functionality with so many things...its almost being a kid again and learning stuff, which seem kinda cool! Maybe not, but I really did enjoy reading your journey.

So a few questions on the latter end of reading. So you have limited (none? some?) functionality in your fingers, but you have functionality in the upper portion of your arms. Wouldn't the injury be below where your spinal cord "meets" that portion of your spinal cord to control them? It just seems strange that it would only effect a certain part of your limb. Do you know why or how that is?

Second, did it effect the muscles above the injury whatsoever? Keeping your head up, face muscles, talking, etc at all aside from the swallowing and immediate difficulties. I don't know how to word it, so I hope it made sense.

Are there any long term possibilities of your situation worsening, assuming you stay active with a partial manual chair and whatnot?

I have a few friends that ride motocross that have had some serious injuries over the years - one guy is a paraplegic (legs only? right?) and has a special bike made that straps him in and all works with hand controls, and he seriously is crazy good still, its super rad.

Thanks so much for reading the whole blog! There's definitely a lot of information on there. The way the nerves distribute themselves throughout the body cause the functionality of your muscles to cut off at a certain point.

http://bestpractice.bmj.com/best-practice/images/bp/en-gb/772-2-iline_default.gif this basically shows what parts of the spine control what parts of your body. So being at C6 I have sensory slight motor functions down to my thumb and pointer finger. I'm starting to gain back more movement my middle and ring fingers as well and have function of my triceps. All motor function above my injury was not impeded at all.

The only possibility of my injury worsening is if I neglect my body and allow myself to tighten and to gain weight which will just make doing everything in my own much harder. There are definitely so many different things that I can still do and really in the end I'm not disabled I'm just differently able.

Edit: and you are very right about the paraplegic, definitely something some people that know is that they have almost full function of their upper body including the chest. For me I cannot control any my chest so I had the tendency to just plop over fairly often as I have nothing hold myself up with but a chest strap.

I'm sorry if this is already asked or if I am being too blunt, but how do you wack off?

I only respond to similar question so I'll keep this answer brief but basically just like anybody else. I have a vibrator to help but it's tough to actually get totally off. I haven't had a full release yet so I'm still working for that.

Okay... dunno if this is over yet or not... but.... what video games do you play? Do you pwn the noobs? lol Meh.. it's probably over... I've always wondered what I would do to kill time if I was not mobile. Peace OP =)

It's not over yet, I'm back entering more questions today.

As for video games, have to stick to mouse based and turn-based style games. The big ones right now our Hearthstone and Civ5 but I'm trying to play others to. Not be able to get out those definitely top, I was super active before this so having to sit around inside kind of sucks.

Hey brother! Just wanted to say hi! Do you ever have dreams in which you have more developed mobility (can run/jump)? Best regards for ever! ;)

Hello! Yes I have a number of different dreams ranging from one's where I'm fully able to ones where I know I'm disabled but still walking somehow to ones where I am in a wheelchair. One thing that's great is when I lucid dream and I can just fly around not even worry about my legs.

During an ultrasound to determine how full Jared’s bladder was he asked “Could you tell if it is a girl or a boy?”

LOL

Yeah… I was still in a bit of shock and heavily sedated but I was definitely trying to find humor in that the shitty situation I was in.

I am an occupational therapy student and reading stories like yours reminds me why I decided to enter this field. Could you tell me a little bit about things your OT did that truly made a difference or things you wish he or she would have done, or done differently?

For me personally the thing that I feel helped me the most when working with my OT was that when given a task they would show me one way to do it and leave me to figure out the rest. They knew I had a problem solving driven mindset and working with them this way allowed me to really figure out how to do a lot of the things on my own and in my own way. Now being home and without someone to show me how to do things instead of asking for help or explanation on how other people in a position to something I just work at figuring out how to do it on my own and what works for me. Obviously this won't work for everybody but it definitely helped me.

Do you have any funny stories that you'd want to share?

Also, are there any questions you get all the time that you want to roll your eyes when asked?

So only because people aren't used to it, a lot of the times they don't understand that I really can't feel much. So this one time I went to a sleep number store to get a bed for me because their beds provide me a lot of different benefits including adjustable head and feet and the ability to reduce the pressure on my body.

So I going to the store and transfer onto one of the beds to see how easy it is to get on the move around with the pressure at 100. Then we ask how low can the pressure go and at what point do I stop having any serious pressure points on my body. As the gentleman at the store starts to lower the pressure he asks me how does it feel and if it's comfortable. I kind of laugh as the pressure keeps going down and say that it feels great. And as he reduces the pressure to almost nothing he asks is that really that comfortable and I pretty much just tell him I can't tell any difference from the beginning. And he was just like, oh yeah…

As for questions, I actually really like answering whatever people ask. I'm sure down the road I'll start to get sick of it but I'm just the type of person who loves to talk and educate people about whatever it may be.

So... Aren't you going to tell us what your sleep number is?

Oh course, right now it's set at 30 so pretty low. But it allows me to sleep without having to turn and not worry about pressure points that could cause skin sores.

How did you find the research study? Was it a specific choice to find one, or was there any reason you choose stem cell research? Had you thought about robotic assistance research or spinal stimulation, as those are common with spinal cord injury research and rehabilitation.

The research actually found me. They were screening patients at a number of different facilities to see if they found one that fit the bill for the study. Once I arrived at my hospital where I did my therapy for the three months I was immediately offered to be part of the study. I thought about a little bit but in the end I realized that I needed all the help I can get and I wanted to help out anyone else I could. I have heard of a lot of different studies but at the moment this one prohibits me from joining number of different types of studies in the future. I'm definitely interested in things like the exoskeleton or spinal stimulation of the future the though.

Just read the sex question, which I think is on everyones minds! I took a human sexualities class in college and was lucky enough to speak to a person with a very similar injury to yours. He had two children after his accident. I asked him how he was able to and he said toys helped a lot, especially vibrating ones held to the base of his penis while having sex. Have you ever tried using something like this?

I have heard a lot from many different people with injuries like mine that toys definitely do help. Right now I have one but it's more of a personal use device that I tried in order to reach climax. I'm sure in the foreseeable future I will start using other types that are recommended to me.

Have you heard about this development?

http://discover.umn.edu/news/science-technology/3d-printed-guide-helps-regrow-complex-nerves-after-injury

http://www.iflscience.com/health-and-medicine/3d-printed-nerve-pathways-help-growth-after-injury

http://www.kurzweilai.net/3d-printed-silicone-guide-with-chemical-cues-helps-regenerate-complex-nerves-after-injury

It's potentially one of the more interesting advancements that could help (i assume) with spinal cord injuries.

No details in your first post, are you under NDA regarding the procedure you had?

I have not actually heard about that development at all but it looks amazing and I'm trying to see what else I can find out about it. Unfortunately due to the nature of the study admit right now I'm not allowed to take part in any other studies that may provide me with the added benefit because they want to isolate my progress and healing to just the stem cells.

I was not explicitly told not to disclose information about the study or the procedure. There's not a ton of detailed information out there regarding the as it's very new and has been kept out of the media for the most part. Here's the link to the company that provided the cells and is conducting the study: http://asteriasbiotherapeutics.com/ there's no names on their site but I was there first cervical patient.

Do you have a favorite "no arms and no legs" joke?

Not really but I do tell everybody that every day is leg day.

I just have to say it always amazes me how resilient humans are. Not just physically but mentally as well. I'm hoping for the best for you man. I couldn't imagine having an injury like this. Do you suffer from pain at all? I had a friend whose dad was paralyzed from mid stomach down, and he had mild to severe back pain occasionally. Occasionally he would suffer strokes as well.

It definitely is quite amazing especially considering the body has many different ways to heal injuries but has no idea how to deal with something like this. I really appreciate it and fortunately enough I don't suffer from very much pain, just minor muscle fatigue and soreness from overuse. The biggest issue is muscle spasm and toning that I have to fight with day-to-day.

Do you have specific stretches or exercises to deal with the fatigue/spasms?

Yes in fact I do. Every day I do a set of leg stretches to help loosen up attendance to make it easier to move around my body as well as help with spasm. As far as fatigue goes I just exercise to gain more endurance and strength so my muscles don't fatigue is quickly.

what do you usually buy when you go shopping?

what did you wear today?

my favorite thing to eat is my moms home made chicken pie. what's yours?

do your parents call you when they're gone?

I don't really shop much but when I do it's just to restock on basic supplies that aren't provided through insurance.

Today I wore exactly what's in my proof photo but that's just a pair of sport shorts, underwear, T-shirt, and a sweatshirt.

I'm a big fan of my mom's homemade buttermilk waffles on Sunday morning, it's a tradition.

My parents used to be super attached in the beginning and they still worry sometimes but I don't receive many calls, just a few check-in texts now and then.

Are you familiar with the ABLE Act?

I'm not familiar with the act, I do know about the ADA or American disabilities act that was started about 25 years ago.

Are you familiar with the work of either Harriet McBryde Johnson or Stella Young?

I am not familiar with either but I would love to learn more. Are they in the spinal cord injury field for therapy or recovery?

My version of Dragon prefers British spellings and can be wonky in other ways. Have you had any issues with that or other assistive technology? If so, what advice would you have for designers (not just for assistive tech, but things like clothes, door handles, restaurant tables, or other common things)?

For me dragons been pretty awesome. It's taking some time to optimize to my voice but I've gotten pretty good at using it and learning the commands. I have the newest version it's really impressive how much do just through voice. As for any other assistive technology devices there is a whole lot else I use. A lot of the things were either designed with multiple plastic attached to already manufactured items where I did therapy or it's the same thing anyone else would use I just have to use a different. Lever door handles work the best, and there's actually a whole line of assistive clothing out there. I've only encountered a few tables that I can't fit under but I've learned a lot of different ways to sit comfortably at a table.

I feel more inclined to adapt to what's already there and try and have other people adapt to me. Granted there's a whole lot that needs to be adapted for people like me with disabilities but at the same time finding the workarounds is kind of fun.

Thanks for doing this AmA!

Follow-up:

Have you been in Worcester for winter?

How's it navigating the snow/sleet? They often don't do a great job of clearing the curbs, so I'd guess that'd be an issue.

I have yet to actually experience winter at all which is going to be quite interesting both for just doing with the cold and navigating through snow and sleet.

Thanks so much for doing this! Has this affected any prior plans you had for school/college? If so, do you wish to continue on with school? What do you like to do for fun on your down time?

It's my pleasure. So far it is really just affected when I will return to school, instead of taking a gap year after high school I'm just taking a gap year after one year of college. I'm also looking at taking online courses keep up with credits so I don't fall too far behind. Right now entertainment is key because there is a lot of downtime. I try to read, browse the Internet a lot, continued exercise, and play some video games.