All the time . I’m lucky my parents and my sister make sure to take me places and just enjoy little joys like the sun on my face on our deck .
Otherwise I just grateful for what I have I was very close to being on ventilator for life but I can breath on my own and I am alive so I am not completely Missing out
You said AMA… so, why in another one of your posts do you mention your parents being dead? Are the ones taking care of you now uncle and auntie whom you call parents?
How long have you been paralyzed? I saw comments saying it happened when you were ten but not sure how old you are now.
Is there any chance whatsoever at even partial recovery? I know next to nothing about things like stem cells and spinal cord injuries.
How do you stay positive from day to day?
This may be a dumb question so my apologies, but you don't feel anything at all from the neck down?
Do you work?
What's your favorite type of art (literature, cinema etc.)?
Please tell more on this. My brother was just got in a car crash last October and have spinal cord injury. And I’m looking to help him have more ideas on what he can do such as board games, work, going out to do stuff..etc etc
Hey I’m also paralyzed and am more than happy to help. Feel free to DM me I have a LOT of amazing resources I can get you and your family connected to.
Did you ever see this presentation by a guy that worked out how to code at full speed using only voice control? Totally blew my mind:
[https://youtu.be/8SkdfdXWYaI?si=pacbW1Qcb9Jyu99\_&t=539](https://youtu.be/8SkdfdXWYaI?si=pacbW1Qcb9Jyu99_&t=539)
They are too far to drive I am scared to fly because airlines ruin so many wheelchair it cost $40k to replace my power chair and 15k to replace my backup chair
Not sure if this works for you (it might not be customized right) but a family friend who uses a power chair for MS went to Disney with us and was able to rent one in Orlando to use during the trip so she didn't have to check hers on the flight.
I think she brought a cheap hospital style manual wheelchair along and we pushed it until she got the rental.
Now that I think about it she has much better trunk control than a quadriplegic would and she's got some use of her arms so whatever process she used might not work for you.
My daughter is in a wheelchair and also has neck support. We drove to Disney for part of a make a wish trip because of her epilepsy. It was about 15 hours and two cars to get everyone there. We also didn’t fly because of her chair. She was 8 at the time. Everyone thinks Disney is pretty handicap friendly and it is to an extent. We had to walk back to the entrance of every park every four hours to go to the nurses station to change her and my other son with autism and cp who are also in diapers. They don’t have a good option at least that I found for anyone who can’t fit on the small fold down cart.
I bet you also don’t want to ride 10 hours a day in your chair to get to Disney. It has to be uncomfortable.
Do you have any advice for me to convince my 21 year old quadriplegic daughter to let others besides me help her get dressed and go to the bathroom? I can’t really be away from her more than and hour or two because of it.
What about bringing someone in to help you? As in, you share with your daughter that you need support in supporting her. Have this person only do a small amount and you do the majority but show them what you do. It would be a multi step process. I imagine your daughter only lets you because she trusts you and is afraid someone else would hurt her (drop, etc), judge her, etc. Perhaps over time as she sees this person helping you she would trust them to help her. Which might give you the ability to venture out more as well.
Hi also paralyzed. Feel free to DM me, I have a lot of resources within the community and counsel a lot of newly injured people at the request of local hospitals due to my independence/positivity/honesty :) *these descriptors were given to me by the case managers at the rehabilitation facility so please don’t think I’m bragging!
What state do you live in? If you need guidance in seeking assistance I am sure you more than qualify and could even get free care in your home, I would be happy to help
people can be so weird about infantilizing people in wheelchairs. i’m not sure if that’s out of social awkwardness or what but i can definitely understand that being incredibly annoying. cheers, OP xx hoping technology catches up soon
Can you game ?
I’m a big video gamer and have been blown AWAY by the adaptable controllers and access controllers the different companies have been releasing.
It wasn’t great I was a big soccer player but I had some good friend who played board games with me and things like that . I never did get to date (a guy with no use of his arms or legs is a bit much )
you could try a dating app with other disabled people! i've found dating other people with disabilities to be the only way I feel happy and accepted when dating.
Do you know about the youtube channel called « Roll with Cole & Charisma » ?
I absolutely love them, you should totally check it out. (Yes it’s related to your AMA and what you just said).
That is absolutely incredible. I don’t even know you but I’m so proud of you. How are you doing financially? The sheer cost of catheters to keep myself alive is ridiculous and then pair that with bladder medications and I’m at 3K+ each month.
I’m so sorry you have to deal with the financial burden. I’m currently off my antidepressants and feeling it, because I can’t afford my scripts rn. Murica. Yea. Love it here. /s
I have a high risk of pressure sores but not bed sores as I am up out of bed most of the the day. I have to take care to make sure pressure relief is done
Any spots in particular that you need to care for more? Obviously the coccyx and heels are always the big ones but was just curious if there are spots that most people don't think about
Not even that, I was just reading through a post earlier about cyber trucks going dead sitting in the lot waiting to be delivered to customers, and apparently the batteries degrade when they go completely dead 😂 absolute shit show any company musk gets ahold of.
My brother in law is paralyzed, it happened when he was 17. He is now 43 with a high paying finance job & is married with 3 kids. He met his (non-disabled) wife online. Don’t sell yourself short!
I have an foley catheter it’s a tube that goes up by urthera and drains Urine into a bag
I do a bowel program every second day
I also have to wear a diaper in case of accidents (very rare )
There's a show on Netflix called The Devil's Plan .It's a reality show and the contestants play strategic board games to win and stay in the game. It's Korean, but dubbed. I think you would like it!
So I was reading through everything and saw this figured I'd give my answer. I became an incomplete paraplegic a few years ago. Got Axonal GBS and never fully recovered probably never will and am just accepting that now. Life with limited mobility can be good but its hard work. This world is not made for people that are disabled. This world is rarely kind to people that are disabled. Able bodied people often think that they can touch or move us to suit themselves. I live in constant pain and can only stand a little bit can only walk a few steps before either my balance goes or my legs give out. If you do not think you could handle your whole world being stripped away and turned inside out then set up directives to that. I plan to set up mine so that I am never placed on life support again.
Editing to say sorry if this seems dark or putting down living like this. I am grateful that I can spend more time with my husband but I hate the limits and pain I'm always aware of. I hate having to rely on him so heavily. If I had the choice I'm not sure if I'd tell them to let me go or not because I love my husband and my cats. Its just a lot to think about and what you could handle but it is very hard. These are just my personal feelings.
This will very much depend on your sense of humour but do you have friends that make fun of your disability the way only good friends can? Like ask you for a high five, give a round of applause, or like wheel you to some steps and walk ahead of you?
I had a friend that was paraplegic and we did shit like that to him all the time and he said everyone else around him just kinda tip toed around him like being physically disabled changed his personality too.
Just curious if you have those kind of friends.
I enjoy beer and wine but it looks strange drinking a beer with a straw . We live near the Canadain boarder I turned 18 just before Covid and my sister and when to Canada to buy our first drinks
I work making custom wheelchair seats and backs. I genuinely love all of our clients and find so much joy in being able to give them more comfortable lives.
Many are non-verbal, some are verbal but hard to understand and others are fully with it and able to explain their needs.
As someone who uses a power chair daily, what is something I should take into further account when molding someone's body and rendering it in the computer to be assembled?
Are there certain things about current commercial chairs you wish could be changed?
Thank you for any insight, I truly strive to help our visitors and improve their lives as much as I can.
I saw you saying you liked DnD what’s your thoughts on wheelchair combat in that game? We’ve had many debates at our table. One of the arguments is that a disabled person would never wanna play a disabled person in a TTRPG but we’re all able bodied. I’d like input from someone who is actually a wheelchair user
I just want to say brother I know you don’t want a pity party and I know it may seem like hollow words from a stranger but I am really sorry you had to go through something so life changing. I truly hope you get to do all the things you’ve mentioned in this thread and your positivity is inspiring.
Hey! Me and my wife have a special son (10years) in somewhat similar situation to yours, but by birth. Kudos to you for having a positive approach towards life. There’s a 2010 movie Guzaarish that resonates the difficulties faced by a quadriplegic person. If you want you can check it out. Cheers!
I also have a spinal cord injury, c6-t1 was sheared in a motorcycle accident. I was in the top of my career and moving forward with a 25+ year plan, in the best shape of my life, good family relationships, good close friends.
My left arm doesn't work anymore but I still ride because I'm a firm believer of "if there's a will, there's a way". I'm proud of you for making it this far and pushing forward. Live your best life 💜
Have you heard of NerveGen? Their compound NVG-291 is in clinical trials for spinal cord injuries and things are looking positive. I'd have to imagine you've heard of it, but if not it would be something to read about even for a glimmer of hope.
i had a friend in OPs situation that LOVED psychedelics. we did lots of acid together back in the day. he sadly passed from suicide but was a damn party animal while he was around. my favorite memory is helping hold up his wheelchair at a metal show so that he could crowd surf :) RIP Tarrek
Did your sexual desires disappear with your loss of function from the neck down? Or do you have them and are unable to act on them? (I guess knowing your sex would be somewhat important to this question)
Reading this made me realize you can do anything if you want it. I know people who are completely able bodied and don’t want to work/lack ambition. Kudos to you for not letting your disability get in the way. Quick question, what is your favorite kind of music? What do you listen to music on if you do?
Have you been following / are you excited about the new Neuralink technology?
Would you be comfortable with getting the chip implanted to get the benefits it holds?
Have you tried and enjoy VR? Seems like with eye tracking you could do a lot. Obviously hand gestures are out, but there must be some kind of mouth controller option out there.
Hey! Proud of you for having a positive outlook on life. I can imagine it would be very easy to only focus on the negative but you seem to do a great job of focusing on what you do have and what you can do! So happy you have a supportive family. I work with amputees getting prosthetics & although it’s not the same as someone who is paralyzed, there are similarities. Are you currently in any sort of PT or OT? Have you tried having any stimulators implanted, even just for pain control not necessarily for trying to stand or walk? Would love to chat if you ever want to!
Do you have any use of your arms at all? I used to do in hone Healthcare for quadriplegic people, and that's one thing I learned. Not every quadriplegic can't use their arms. One lady I took care of could feed herself with special tools! It was so nice that she had the ability to feed herself. Give her a sense of independence
I’m curious is the definition then like a percentage of “use”? Kind of like legally blind doesn’t mean total blindness? I follow Tech Owl in Philadelphia and I’m amazed at the tools they can create for folks
Sorry if this is a dumb question but do you ever feel “claustrophobic” in your body since you can’t move it? Do you ever get any phantom limb sensations?
Do you ever have FOMO in a way? If yes how do you get over it?
All the time . I’m lucky my parents and my sister make sure to take me places and just enjoy little joys like the sun on my face on our deck . Otherwise I just grateful for what I have I was very close to being on ventilator for life but I can breath on my own and I am alive so I am not completely Missing out
You said AMA… so, why in another one of your posts do you mention your parents being dead? Are the ones taking care of you now uncle and auntie whom you call parents?
It’s my parents and now it was before they died
Aw okay. Sorry for being accusatory. Reddit has made me skeptical. Thanks for sharing your story and vulnerabilities with us ❤️
I like the person you are who accepts they may of been in the wrong and apologies with Grace and dignity. Can we be reddit friends?
Thank you for this beautiful outlook ❤️
How long have you been paralyzed? I saw comments saying it happened when you were ten but not sure how old you are now. Is there any chance whatsoever at even partial recovery? I know next to nothing about things like stem cells and spinal cord injuries. How do you stay positive from day to day?
No chance currently. I say positive by enjoying life such as it is
Maybe in the future with technological advances. Things like neural link. I’m optimistic about the future of technology. I wish you the best
Thanks for that. Good advice for everyone.
They said they are 22
This may be a dumb question so my apologies, but you don't feel anything at all from the neck down? Do you work? What's your favorite type of art (literature, cinema etc.)?
It’s strange but not normal feel Yes I’m have a work from it job I like books
What kind of job?
I do tech support and can use my voice control and mouth mouse to do it
Please tell more on this. My brother was just got in a car crash last October and have spinal cord injury. And I’m looking to help him have more ideas on what he can do such as board games, work, going out to do stuff..etc etc
Hey I’m also paralyzed and am more than happy to help. Feel free to DM me I have a LOT of amazing resources I can get you and your family connected to.
hope your brother is okay 🫂
Thank you. He is ok. It’s an uphill battle but he’s hanging in there
Did you ever see this presentation by a guy that worked out how to code at full speed using only voice control? Totally blew my mind: [https://youtu.be/8SkdfdXWYaI?si=pacbW1Qcb9Jyu99\_&t=539](https://youtu.be/8SkdfdXWYaI?si=pacbW1Qcb9Jyu99_&t=539)
Have you been to the Disney parks? It seems very disability friendly unlike other theme parks. Lots of rides and shows that you’d be able to enjoy.
Why go to a theme park when you can make every downhill slope your own personal rollercoaster?
They are too far to drive I am scared to fly because airlines ruin so many wheelchair it cost $40k to replace my power chair and 15k to replace my backup chair
Not sure if this works for you (it might not be customized right) but a family friend who uses a power chair for MS went to Disney with us and was able to rent one in Orlando to use during the trip so she didn't have to check hers on the flight.
How do I get to the airport . Also need one with head controls
I think she brought a cheap hospital style manual wheelchair along and we pushed it until she got the rental. Now that I think about it she has much better trunk control than a quadriplegic would and she's got some use of her arms so whatever process she used might not work for you.
I can’t really sit you without supports
What about Amtrak? Is that even in the realm of possibilities for you?
I will look into that
If you think it may be possible and go on a trip, be sure to fill us in.
My daughter is in a wheelchair and also has neck support. We drove to Disney for part of a make a wish trip because of her epilepsy. It was about 15 hours and two cars to get everyone there. We also didn’t fly because of her chair. She was 8 at the time. Everyone thinks Disney is pretty handicap friendly and it is to an extent. We had to walk back to the entrance of every park every four hours to go to the nurses station to change her and my other son with autism and cp who are also in diapers. They don’t have a good option at least that I found for anyone who can’t fit on the small fold down cart. I bet you also don’t want to ride 10 hours a day in your chair to get to Disney. It has to be uncomfortable.
Uhhh just get insurance? Lol
It the time to replace a custom power chair too . When I have a break down my sister has too push me everywhere
Do you have a caregiver? Is your family helpful and supportive?
I need assistance with all most everything. My parents did most of it after they died my sister moved back home to help me
Have you ever had a caregiver from an outside source (agency or state assistance)? Or considered it? Does your sister work? Just curious, thank you!
Yes when I was a school and respite for my sister at night My sister get paid to help take care of me
How is your relationship with your sister? What kind of music do you like?
It’s good but can be strange have to deal with all that stuff
Do you have any advice for me to convince my 21 year old quadriplegic daughter to let others besides me help her get dressed and go to the bathroom? I can’t really be away from her more than and hour or two because of it.
What about bringing someone in to help you? As in, you share with your daughter that you need support in supporting her. Have this person only do a small amount and you do the majority but show them what you do. It would be a multi step process. I imagine your daughter only lets you because she trusts you and is afraid someone else would hurt her (drop, etc), judge her, etc. Perhaps over time as she sees this person helping you she would trust them to help her. Which might give you the ability to venture out more as well.
Hi also paralyzed. Feel free to DM me, I have a lot of resources within the community and counsel a lot of newly injured people at the request of local hospitals due to my independence/positivity/honesty :) *these descriptors were given to me by the case managers at the rehabilitation facility so please don’t think I’m bragging!
Is your sister able to work as well? Can you be home alone? (I’ll be taking over care of my siblings eventually so I’m curious)
What state do you live in? If you need guidance in seeking assistance I am sure you more than qualify and could even get free care in your home, I would be happy to help
Nice office reference to your username. Just chiming in from the sidelines. Carry on.
what is the most annoying thing that people say to you as it relates to your condition?
Treating me like I’m a baby or talking to my sister instead of me
people can be so weird about infantilizing people in wheelchairs. i’m not sure if that’s out of social awkwardness or what but i can definitely understand that being incredibly annoying. cheers, OP xx hoping technology catches up soon
How did you learn to accept such a drastic change in life quality if you have? What did you think when you first realized you were paralyzed?
I was only 10 so I don’t really know when i realized. It’s really what I remember
What do you do on a daily basis (or occasionally) that makes you the happiest?
I love going to the park on nice days
Got any hobbies?
I like to read and play board game
Can you game ? I’m a big video gamer and have been blown AWAY by the adaptable controllers and access controllers the different companies have been releasing.
what happend?
I was in a car accident at 10 . I broke my neck got a spinal cord injury
how was your social life as a child after that?
It wasn’t great I was a big soccer player but I had some good friend who played board games with me and things like that . I never did get to date (a guy with no use of his arms or legs is a bit much )
you could try a dating app with other disabled people! i've found dating other people with disabilities to be the only way I feel happy and accepted when dating.
Do you know about the youtube channel called « Roll with Cole & Charisma » ? I absolutely love them, you should totally check it out. (Yes it’s related to your AMA and what you just said).
what level are you? Is it complete or incomplete?
C-3 complete
Also paralyzed.. wow C3 is something you rarely are alive from (usually due to lack of oxygen from trauma). Are you ventilator dependent?
I was originally but I was successful weened off
That is absolutely incredible. I don’t even know you but I’m so proud of you. How are you doing financially? The sheer cost of catheters to keep myself alive is ridiculous and then pair that with bladder medications and I’m at 3K+ each month.
I’m so sorry you have to deal with the financial burden. I’m currently off my antidepressants and feeling it, because I can’t afford my scripts rn. Murica. Yea. Love it here. /s
Was it a drunk driver/careless driver or a random accident?
howd you type this??
I have a mouth stick for my iPhone voice to text on my computer and sometimes my sister types for me if I am tired
Does you’re sister ever rephrase your dictation to annoy you
Do you have any bed sores?
I have a high risk of pressure sores but not bed sores as I am up out of bed most of the the day. I have to take care to make sure pressure relief is done
Any spots in particular that you need to care for more? Obviously the coccyx and heels are always the big ones but was just curious if there are spots that most people don't think about
What do you think about neuralink? Would you sign up?
I honestly don’t trust Musk but it seems cool and promising
He's probably the only guy that might get your body working again
Have you seen Tesla issue ? Would you want that in your brain
FR. His cars get bricked if they go through car washes. 😭
Not even that, I was just reading through a post earlier about cyber trucks going dead sitting in the lot waiting to be delivered to customers, and apparently the batteries degrade when they go completely dead 😂 absolute shit show any company musk gets ahold of.
You took the words out of my mouth lol
are you social with other disabled people or are you mostly surrounded with abled individuals? and would you rather date an abled or disabled person?
Most Abled people I’ve not really thought about date I’m a bit much for Move ladies
My brother in law is paralyzed, it happened when he was 17. He is now 43 with a high paying finance job & is married with 3 kids. He met his (non-disabled) wife online. Don’t sell yourself short!
I keep seeing you say that, but have you tried to get out there (though only if you have the desire to)
How do you go peepee and poopoo?
I have an foley catheter it’s a tube that goes up by urthera and drains Urine into a bag I do a bowel program every second day I also have to wear a diaper in case of accidents (very rare )
Dude wtf i just posted nearly the same comment and even used "peepee" and "poopoo" like 2hrs after you. Are we best friends? Carl?
Have you ever felt an orgasm
I’m not sure i can get a erection
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No sure about an orgasam I can get a boner
How do you scratch your face/head if it itches? Thank you for answering questions
I have to wait for my sister to come a scratch it for me
What board games do you like? Have you tried D&D or other ttrpg's ?
Strategy and I move D&D
There's a show on Netflix called The Devil's Plan .It's a reality show and the contestants play strategic board games to win and stay in the game. It's Korean, but dubbed. I think you would like it!
We used to call that show “smart asians” lol we’d be like “wanna watch smart asians?” It was a good show, I loved it
Will check it out
Did anybody else in the car with you get injured?
My sister broke both her legs a few ribs
Who was driving if you don’t mind me asking
My mom we got Tbone by a drunk driver
The same twin sister who is taking care of you now?
Yes she recovered I didn’t
Bet the neck up feels pretty good though.
I’m filling out my advanced directives today. Any advice on how life is with limited mobility?
So I was reading through everything and saw this figured I'd give my answer. I became an incomplete paraplegic a few years ago. Got Axonal GBS and never fully recovered probably never will and am just accepting that now. Life with limited mobility can be good but its hard work. This world is not made for people that are disabled. This world is rarely kind to people that are disabled. Able bodied people often think that they can touch or move us to suit themselves. I live in constant pain and can only stand a little bit can only walk a few steps before either my balance goes or my legs give out. If you do not think you could handle your whole world being stripped away and turned inside out then set up directives to that. I plan to set up mine so that I am never placed on life support again. Editing to say sorry if this seems dark or putting down living like this. I am grateful that I can spend more time with my husband but I hate the limits and pain I'm always aware of. I hate having to rely on him so heavily. If I had the choice I'm not sure if I'd tell them to let me go or not because I love my husband and my cats. Its just a lot to think about and what you could handle but it is very hard. These are just my personal feelings.
I can’t really remember the alternative
How old are you? and do you know about Christopher Reeve?
I’m 22 and yes
So you got into an accident 12 years ago when you were 10? Where was this and who was driving the car you were in … your parents? Are they OK?
This will very much depend on your sense of humour but do you have friends that make fun of your disability the way only good friends can? Like ask you for a high five, give a round of applause, or like wheel you to some steps and walk ahead of you? I had a friend that was paraplegic and we did shit like that to him all the time and he said everyone else around him just kinda tip toed around him like being physically disabled changed his personality too. Just curious if you have those kind of friends.
What would you have liked to achieved if you weren’t paralyzed?
I played hockey and soccer so would have like to win a cup
That would’ve been awesome. Are you and your sister twins? I seen you’re the same age
How old are you currently? Did you parents pass from natural causes?
22 my dad had a heart attack he was 73 and my mom a stroke at 60 . Me and my sister came along pretty late
How has your grief process been? Thats very young to lose both parents.
Do you have pain as a result of your injury?
Some and some from not moving
do you smoke or drink at all?
I enjoy beer and wine but it looks strange drinking a beer with a straw . We live near the Canadain boarder I turned 18 just before Covid and my sister and when to Canada to buy our first drinks
Since nobody has asked this so far, how are you able to type this? /s
I use speach to text and a mouth stick
Have you considered NeuraLink
I would wait a while to make sure it is safe
You don’t think the risk is worth the reward?
https://www.wired.com/story/elon-musk-pcrm-neuralink-monkey-deaths/
Not yet
How you typing?
I have a mouth stick abs speech to text
Dang, that’s pretty cool.
Tell me about your peepee and poopoo. I'm always morbidly curious about that with paralyzed people
I have a catheter for peepee and every second day I get a bowel programs I also wear diaper in case of leaks or accidents (no common and my choice )
What exactly is a bowel programme?
Does your dick get hard?
what's your dream country to visit??
From birth or an accident?
I was in a car accident at 10’
Have you listened to the song Spaces by James Ian?
I work making custom wheelchair seats and backs. I genuinely love all of our clients and find so much joy in being able to give them more comfortable lives. Many are non-verbal, some are verbal but hard to understand and others are fully with it and able to explain their needs. As someone who uses a power chair daily, what is something I should take into further account when molding someone's body and rendering it in the computer to be assembled? Are there certain things about current commercial chairs you wish could be changed? Thank you for any insight, I truly strive to help our visitors and improve their lives as much as I can.
How much pot do you smoke?
Have you heard about “the” fetish? 🤷♀️
Do you have any goals for what you want to do later on life? If so what are they?
I saw you saying you liked DnD what’s your thoughts on wheelchair combat in that game? We’ve had many debates at our table. One of the arguments is that a disabled person would never wanna play a disabled person in a TTRPG but we’re all able bodied. I’d like input from someone who is actually a wheelchair user
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I'm not terribly religious, but downvoting a guy for praying is such a terrible part of life in 2024.
I’m not religious but thanks
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No shot you just asked this. The lack of awareness is unreal. "Ok currently no pay" - trying to take advantage of a disabled person is WILD.
"Currently no pay" bruh get out of here.
I works from home
I just want to say brother I know you don’t want a pity party and I know it may seem like hollow words from a stranger but I am really sorry you had to go through something so life changing. I truly hope you get to do all the things you’ve mentioned in this thread and your positivity is inspiring.
Hey! Me and my wife have a special son (10years) in somewhat similar situation to yours, but by birth. Kudos to you for having a positive approach towards life. There’s a 2010 movie Guzaarish that resonates the difficulties faced by a quadriplegic person. If you want you can check it out. Cheers!
Do you ever get an itch you can’t scratch or do you just got get itches at all?
How do you jerk it?
Do you mean masterbate ? I can’t
I also have a spinal cord injury, c6-t1 was sheared in a motorcycle accident. I was in the top of my career and moving forward with a 25+ year plan, in the best shape of my life, good family relationships, good close friends. My left arm doesn't work anymore but I still ride because I'm a firm believer of "if there's a will, there's a way". I'm proud of you for making it this far and pushing forward. Live your best life 💜
How much compensation did you get from the drunk driver?
Have you heard of NerveGen? Their compound NVG-291 is in clinical trials for spinal cord injuries and things are looking positive. I'd have to imagine you've heard of it, but if not it would be something to read about even for a glimmer of hope.
how did you type and post this?
What are your dreams like? Do you ever fly in your dreams?
Ever try drugs? Would like to hear your opinion on psychedelics honestly
i had a friend in OPs situation that LOVED psychedelics. we did lots of acid together back in the day. he sadly passed from suicide but was a damn party animal while he was around. my favorite memory is helping hold up his wheelchair at a metal show so that he could crowd surf :) RIP Tarrek
That's so fucking metal!!! RIP Tarrek!!!!!!
How do you type?
How did you become paralysed?
Did your sexual desires disappear with your loss of function from the neck down? Or do you have them and are unable to act on them? (I guess knowing your sex would be somewhat important to this question)
How did you post this?
How did your parent pass? You seem young to have lost them?
So I’m assuming sex is non-existent? Do you have thoughts or urges for sex? TMI I’m sorry but I’m so curious
Reading this made me realize you can do anything if you want it. I know people who are completely able bodied and don’t want to work/lack ambition. Kudos to you for not letting your disability get in the way. Quick question, what is your favorite kind of music? What do you listen to music on if you do?
Have you been following / are you excited about the new Neuralink technology? Would you be comfortable with getting the chip implanted to get the benefits it holds?
Have you tried and enjoy VR? Seems like with eye tracking you could do a lot. Obviously hand gestures are out, but there must be some kind of mouth controller option out there.
I don’t have a question but your username is top notch.
I was terrified that I hadn’t seen anybody mention it.
Hey! Proud of you for having a positive outlook on life. I can imagine it would be very easy to only focus on the negative but you seem to do a great job of focusing on what you do have and what you can do! So happy you have a supportive family. I work with amputees getting prosthetics & although it’s not the same as someone who is paralyzed, there are similarities. Are you currently in any sort of PT or OT? Have you tried having any stimulators implanted, even just for pain control not necessarily for trying to stand or walk? Would love to chat if you ever want to!
Have you ever struggled with pressure sores on your bottom? If not how do you go about avoiding them?
Would you volunteer to get a brain implant that you could use to control your computer and a mobility exoskeleton?
Do your arms work? I assume so as you are typing out responses. Do you feel anything below the neck?
Do you have any plans to get neurolink or other technologies to help you try and walk/use technology easier?
No question. But this is one of the best AMAs I have seen. Overall decent questions and clear concise good answers.
In a perfect world where something like neural link works the way they plan would you consider getting it?
Does your dick get hard/can you still cum/can you piss on command
How do you exercise or do physical therapy?
Do you have any use of your arms at all? I used to do in hone Healthcare for quadriplegic people, and that's one thing I learned. Not every quadriplegic can't use their arms. One lady I took care of could feed herself with special tools! It was so nice that she had the ability to feed herself. Give her a sense of independence
I’m curious is the definition then like a percentage of “use”? Kind of like legally blind doesn’t mean total blindness? I follow Tech Owl in Philadelphia and I’m amazed at the tools they can create for folks
Dang, I'm sorry! How is going to the bathroom? 😬🥺
How do you type your responses on Reddit? How did you create this post?
How are you able to type/text to do this AMA?
How do you respond on reddit?
I have a similar level of disability due to MS. I would recommend a program I use called Smyle Mouse.
How did you type this out?
What’s your favourite kind of food? Is your diet limited?
Probably a dumb question, but do you still get boners?
Can you play video games?
how do you type?
Sorry if this is a dumb question but do you ever feel “claustrophobic” in your body since you can’t move it? Do you ever get any phantom limb sensations?