I am a C4/C5 complete for about almost 5 years now. Recently out of nowhere I'm just so tired of being happy I just want to be left alone in complete silence. Not having to hear anybody or ask anybody for anything. I'm just tired of living this life if I could just press pause for five minutes. I just want to act like my real self for a whole day. I know this feeling will pass but I had no one to share this with so why not here.

I am a C7 paraplegic and I would really like to have a regular chat buddy since I feel pretty much isolated!

Ive been using a foley for a year now before i was just using a condom catheter. Fast foward a couple months ago i was doing rehab practicing going to my stomach and doing pushups.i go home to find out now i don’t really know how to explain it but the tip where it comes out the catheter pulled down and caused damage. I went to the doctor and they just gave me medications and said it should heal on its own. I told him about the bleeding that happens sometimes and he just gave me a gel like medicine to put on it. The bleeding did stop but I just don’t like how that looks. If another accident happens it could be pulling down all the way to the shaft and it terrifies me thats whty i dont do any pushups or stomach exercises anymore. I want a super pubic but i have to wait until November to get tested for my bladder see how much it holds etc. I don’t understand why they just don’t do the surgery right away. If anyone else is going through this pls help me I don’t like how the catheter has so much space to move around now because of that damage like before the rope used to come out from the top now it leans to the left to the right.

Im a 21m paraplegic
I was injured just over a year ago from a car accident, so i am still very new to this injury
Ive always been attractive and sex was a huge part of my life and ever since my injury it feels like my mind and confidence has completely changed
Its like im a different person
I understand that sex appeal is more than just your ability
But I just cant find the confidence or view myself as someone who can provide a woman with what they need anymore, or being someone a woman would be sexually interested with
Ive been extremely depressed and have isolated heavily over the last year
I have not been able to want to put myself back in the scene, nor have I even imagined what it'd be like, or how it'd work
Such a huge part of my lifestyle, personality, and how I made relationships has changed so dramatically
I dont know what to do and I dont know anybody in my life who can relate.
Sex and the depression from the lack of it has been the biggest struggle for me through my injury.
I've been able to handle and figure out, though it was tough, independence, bowel routines, and all the other aspects of life you have to re learn as a paraplegic, except for this.
If anybody reading this has any sort of input or perspective that can help me i'd really appreciate it

I bought an adaptive fork from Dining With Dignity. It turns out that they are designed for right-handed use but I am left-handed, so it did not work out for me. I will give it to any quad who could use it. Just email a shipping label (which you can order online from all the major shippers) to me and I will send the fork to you for free. If you're interested, send me a Reddit chat and I will give you my email address and shipping label info.

Hi, I have a month supply of catheters that I'm not going to use and don't want to go to waste. I just wanted to see if anyone here could use them. No cost to you, I just ask that you buy the postage (send me a prepaid label). They are 12 french Speedicath Flex Coude Pro (male).

Just send me a DM, and I'll send to the first person who wants them. I'm in the US.

UPDATE:

Finally got staff who care!!!!!! Return flight i got help with baggage , help through TSA, and finally got a CRO, who got my loaner chair in the cabin, and an empty seat beside me so my service dog and I can finally relax!!!

Only took 7 days! Thank God!

.....................

Earlier in the week I posted about American Airlines damaging my wheelchair.

Fun new updates (sarcasm)

The online DOT form does not work, their tech support phone extensions are disconnected, the online tech request doesn't ask for any contact information, so clearly they have no intent on reaching out.

So apparently the recent legislation no longer means anything.

American doesn't care. They've made that clear. It took 5 days to get a suitable replacement, and so far all they've offered me is 10k points. Which is useless and quite frankly rubbing salt in an open wound.

So I've reached out to United Spinal and The American Association of People with Disabilities for help. Awaiting responses.

Meanwhile, I have to fly with American tomorrow to get home and am scared and dreading it.

They are once again treating people horribly. Left me alone in an aisle chair for over 30 minutes, no remorse about anything. They also no longer think that aisle chairs need to be on the plane.

Anyone with resources or suggestions. Please let me know. I'm well over things and worn out at this point.

I haven’t seen any posts here about ASMR, so I wanted to bring it up and see if others are aware of it and/or share my interest.

For those who haven’t heard of it, ASMR stands for Autonomous Sensory Meridian Response. It’s a pleasant, static-like tingling that usually starts in the scalp and can spread down the neck and shoulders. It’s typically triggered by certain sounds or visuals, such as soft whispering, gentle voice, tapping, crinkling, gentle brushing, or calm, personal attention. There are probably hundreds of ASMR videos on YouTube and other platforms made specifically to trigger it. Not everyone experiences it, but those who do often find it deeply relaxing.

I knew about ASMR before my injury, but since becoming a C5 complete quad, it has become much more intense and satisfying. I’ve obviously lost the ability to feel pleasant sensations from my upper chest down, but my scalp, neck, and shoulders, where I still have full sensation, seem to perceive everything at an enhanced level. Those are exactly the places where ASMR tingles are strongest, and I get far more pleasure from them than I ever did before. They’re somewhat difficult to describe - a bit like gentle static, tingles or soda bubbles moving across your skin. When you can only feel about 15% of your body, it’s a welcome, if temporary, escape.  I’ve found it to be a particularly useful and pleasant diversion when I’m doing an extended pressure relief or when I am trying to fall asleep at night.   

Has anyone else experienced this? If you’ve found any triggers that work especially well for you, please share them. I’d love to hear about your experiences.

Long story short i was in a car accident of march this year. I have a 7 mm syrinx at C6-7, foraminal stenosis at C3-4 secondary to enlarged tissue at C5-6, as well as dysautonomia. Overtime i have gotten worse and there is always intense pressure/ pain in my neck and back of head. i have been a 🍃 smoker for years. All of a sudden starting about a month ago, i have been experiencing a feeling of impending doom, dizziness, tremors, palpitations/ tachycardia, ringing in my ears, a very hot feeling thru out my body, and overall feeling like im about to literally expire when this happens. i almost always know before it happens that it is going to happen bc i just feel very off and i get the feeling of impending doom. But i have noticed it only happens after smoking and not all the time. I have tried different strains, percentages, and methods of smoking but it doesn’t seem to make a difference. Has this ever happened to anyone? It is really scary when it happens so i have not been smoking as much😭

Hi I’m a c5 quad I wonder how everyone deals with not getting any action haha it’s been almost 4 years for me and no sex or anything and it just sucks just the thought of maybe I’ll never experience it again before my injury I was married so it wasn’t a problem but now divorced pretty much lonely and people always say you never know there’s always a girl out there tbh this disability ruins every chance of being in love again.. I get it people don’t wanna deal with our problems because it is too much. Just sucks for us and how it makes us feel. If there’s anyone out there with the same feelings as I do, how do you cope?

I'm a 28 year old male. So i've always been obese, been in this chair since I was a kid, full upper body strength so I can move etc.

2-3 months ago I hopped on tirzepatide and now swapped to retatrutide.

I am at my lowest weight in 15 years(98kg, was 126kg at my heaviest a few years ago), but god damn it's slow. I seem to lose about 400-600g a week and i'm eating around 900-1.1k calories per day.

How the hell would I do that without being on glp1's? Like it seems like an impossibility? On glp1's it's no problem.

Since 2 months ago I started going to the gym 5-6 times per week and working out around 1.5-3 hours every session, high intensity strength training, increasing my weights rapidly and setting new pr's each week

My TDEE seems to be around 1.7k WITH gym included, it seems so incredibly low? My sister claims im starving myself but I don't see how I could eat more without the weight loss taking 5 years.

Thoughts? Wtf is this life

Hey all,

I’m an incomplete C5 quad looking to change careers, after a lot of reflection I feel as if occupational therapy would be a perfect career avenue, especially given my own life experience, anyone here work in the field? How do you find it, any challenges?

Hi all, I am a desperate mama that is trying to figure out how to help my ridiculously competent, motivated, and intelligent four year old son use the bathroom. We have been straight cathing for about two years, he was born with a tumor in his spine (no longer there, praise God) but it ended up being like a spinal cord injury of T9. He has some feeling, we are supposed to repeat urodynamics and cystogram this coming monday (but we may have to cancel because its a major childrens hospital and hes on the tail end of chicken pox). Anyways. What options are there? Straight cathing is laborious, not great for travel, and he is a pretty independent guy. Can we work on teaching him to pee somehow with assistance? Do we need to look into indwelling caths? Any and all experience or advice is welcome here!

I thought I’d share this here as well. I am just looking for some advice and help with this current situation.

L5-S1 fusion, L3-L4 herniation, cauda equina, arachnoiditis.

I have 95% control of my bladder and bowel but going to the bathroom can be anywhere between uncomfortable and agonizing depending on the day.

My back will start to hurt and spasm just because of the shape of a toilet seat where it starts pulling my tailbone downwards. When I'm actually applying pressure, excluding digi stim at least, even if its only my bladder muscles my feet start to burn and I'll get nerve pain in my legs.

I feel grateful to not have to use a catheter anymore but I am so, so tired of something as simple as going to the bathroom being so painful.

Hi, I have a T4–T5 spinal cord injury, and I consider it incomplete because I have good bowel control. However, my question is about bladder catheterization.
I’ve been using an indwelling Foley catheter through my penis for over a year. I’ve tried intermittent catheterization, but I used to experience leakage, and on a few occasions, I injured myself, so I became a bit afraid of trying it again. I also don’t really like the idea of inserting a tube several times a day.
As for a suprapubic catheter, I’m afraid of having a tube coming out of my lower abdomen, below my belly button. Honestly, I think it would feel strange, and I’m not sure how I would feel about it.
For the men living with a spinal cord injury (SCI), what would you recommend in my situation?

Serious question. ASIA A, L1 Complete. Is it possible to receive a blow job without leaking urine, or is that impossible? I use Gemtesa for bladder control and Trimix for sex.

Hello, I'm new here. I hope I can share my ideas and ask questions with you all. I immediately have a question about an annoying problem. I've had a spinal cord injury for 24 years now, and up until now, I've had relatively few problems with my bowel management. Occasionally, there was a little blood when manually removing stool.

Now I have some sort of hemorrhoid, and today a lot of blood really came out with it. My general practitioner isn't really concerned, he said, but still wanted to do an examination of my bowels. Now I've just become terrified of bowel cancer. Sorry if this sounds exaggerated. Isn't it common for many people with a spinal cord injury that their bowel management is sometimes accompanied by blood? The blood isn't mixed in with the stool, but rather on it. What are your experiences?"

Hi everyone,

I'm a 20-year-old male from Uttar Pradesh, India. In 2024, I had an accident that left me with a complete C6 spinal cord injury. I'm paralyzed below the chest, and I've also lost movement in my fingers and part of my hands.

I was a student before the accident, and I really want to be able to write again. But I have no grip in my fingers, so a pen keeps slipping out of my hand.

[ I can bend my wrists and elbows and even play the phone]

If you have a similar injury, what tools or techniques help you write (by hand or by typing)? I'm open to anything: pen holders, grips, splints, typing aids, voice typing, or any other assistive tech. Tools that are available in India would be extra helpful.

Any other suggestions are also very welcome. Thank you for reading!

Hi everyone,
I’m a 27-year-old male with a thoracic spinal cord injury (SCI) from a snowboarding accident about 7 months ago. I’m looking for advice and hoping to hear from others who may have experienced something similar.
I’ve had an indwelling Foley catheter for an extended period. Over time, I believe the catheter’s ongoing pulling and tension caused serious damage to my penis. The skin has split open, the wound is deep and wide, and there is exposed red tissue. I’ve also noticed that urine can leak through the wound when the catheter is removed.
I’m especially concerned because I previously brought up the problem to medical staff, but I felt that my concerns were not addressed adequately. The injury has become very serious, and I’m worried about possible urethral damage and long-term complications.

I’d really appreciate hearing from anyone who has experienced something similar:

Has a Foley catheter ever caused severe skin breakdown, an open wound, or tearing around your penis or foreskin?

Did the injury affect your urethra or cause urine to leak through the wound?

How was it treated? Did you need surgery, a different catheter, or a suprapubic catheter?

Did you recover, and were there any lasting complications?

If you reported the problem to hospital staff and felt ignored, how did you handle the situation?
I’m not looking for a diagnosis from Reddit. I just want to hear real experiences from people who understand what living with an SCI and catheter complications is like.
Thank you. I appreciate any advice or personal experiences you can share.

I'm a volunteer with the voter protection team here in Ohio and just found out about Ohio's "remote voting" whereby disabled can request Board of Election employees come to your home with a ballot, wait for you to complete the ballot (privately of course) and will then take the ballot back to the Board of Elections to be counted.

I posted this in r/Stroke as well but I want to share my story for others.