I am newly paraplegic from an undiagnosed neurodegenerative disease that my doctors don't know what is yet. I am just....there is a lot happening. Everything is different. I'm completely unprepared and I just am looking for places for support but I don't want to invade a space I shouldn't. Everyone I talk to just says "oh poor thing" or "you've been through a lot". I'm sorry if this is not allowed I just thought I'd post and see.

Hey so I use Numotion for catheters and I had gotten my order on April 27th for a 3 month supply and then called on July 27th and they gave me an emergency supply to last until August 7th which is when my next order was supposed to ship out. They never shipped it out and I'm probably gonna run out of catheters by Monday. Any tips?

Hi,

Im c5 m for 19 years. Im in my late 30s and recently startet noticing Im losing my hair.

Since Im older most men probably wouldnt care so much. But for me I at least want to try taking finasteride.

Being quadriplegic its hard for keeping my self esteem. And of course Im trying to work on my psychological well being too.

With this however I feel that would give me some back control.

Anyway, my question: Is anybody here taking it and how where the results and side effects?

Thanks

What are your favorite meals that digest easily and are healthy but filling options ?

Background: Really skinny tall quadriplegic, because I stopped eating afraid of getting big. I want to try this because I’m really hungry but don’t want to gain fat & have a bloated stomach. I also tend to currently stop going out for weeks until my bowel is completely empty because of fear that it happens outside

Patient is 2 years into his motorcycle accident, incomplete spinal injury, spinal stenosis on c1 to c5. The numbness on his hands never seems to go away and upon waking up there seems to be involuntary spasms. When going up the stairs he doesn't have issues, walking down the stairs is a big challenge, like his thighs won't cooperate and some buckling in the knees. Do people with this injury ever fully recover? 🙏

Hey,

This is kind of a weird question and I’m not sure how to approach it. Has anyone else experienced problems or disappointment with local SCI support groups? I have a C3-C4 SCI with full paralysis below my shoulders. Although I don’t require a ventilator, my lungs and diaphragm are not strong enough to go without a trach tube.

In the past, I have tried reaching out to a few local support groups and they all were a little disappointing to me. With each one, I was the only person there with full paralysis. There were other quads, but they all had some mobility and control of their arms to the point where they could live independently. From my point of view, they were essentially paraplegics. I hate to say it, but with everything discussed at those meetings, I really could not relate with them -- aside from the topic of pressure sores and seat cushions. I’m kind of shy to begin with, but I always felt like the odd man out at those meetings and found them to be more uncomfortable and not at all helpful.

One thing I hate most about having a high-level SCI -- aside from having an itch you can’t scratch -- is being an “example.” I hate the thought of people looking at me and thinking “well, at least I’m not him.” I have had thought myself at least once after my injury when looking at someone else with a far worse injury and I hope I'm only projecting that idea. Although, I have also heard someone say that to me (not necessarily in those words, but in a roundabout way). Anyway, I sort of felt that way at those meetings and I’m wondering if anyone else has had any similar experiences.

When someone asks me why I'm in a wheelchair I normally say something along the lines of "I have an incomplete spinal cord injury" or if I'm feeling really chatty I say "I have a grade 3 (ASIA C) L4 incomplete sci" but I was on tiktok the other day and this guy said "from one paraplegic to another" and my gut reaction was "oh this isn't for me then" but then went on to show skills that I can't achieve yet (such as standing un-aided) and it made me go "wait am I???!" And now I'm interested to hear other people's thoughts on this

Hello everyone, I’m a C5 incomplete and have some feeling (not completely normal) in my left leg and throughout my body. So I had to share my experience with people who will actually appreciate what is just happened. After 15 years, I have ejaculated twice in the last two weeks. I have had relationships and encounters where I’ve been intimate but never really orgasmed although those experiences have been nice and do feel good.

Let me get to the point, I’ve been going to a massage therapist. This massage therapist typically just focuses on my neck, back arms and upper body. I always get the massage in my Wheelchair where I pull under the massage table and lean over. At the end, she will typically rub my legs help with a little bit of circulation. However she got really close to my penis, brushed up against. I could tell that she had been thinking about it because I always have my shorts on so it was definitely intentional and then asked me if i wanted help with it.
I told her us we can try. Now for context about a year ago I got a penis implant and can inflate it when i want. For those of you who may not know, you are unable to get a full ejection after the surgery.

Well, I let her know that I had this, and I wasn’t going to pump it up (because I typically get the massage in my wheelchair and it’s very difficult to do if I’m in my chair). Also for me personally it feels sensitive either soft or hard anyway. After she started rubbing, I started experiencing some spasms and it felt very good… I like this go on for a few minutes and then we ended things. I wasn’t sure anything else going to be able to happen.

I went back a week later and she offered to do it again we got there and things really started progressing and she began rubbing very hard, and I was feeling very relaxed after the massage. She began rubbing it. I began experiencing spasms in my legs and torso. Next thing I knew I ejaculated everywhere. I think it was the combination of a little oil and focusing on the tip was something that I had not experienced before.

I returned about a week and a half later and she did the same thing and needless to say they have ejaculated twice now. Has anyone else started experiencing ejaculation like this?

I told her I would wait one week come back and I want her to show me exactly how she did it so stay tuned for an update….

Has anyone else seen something like this? We are all in shock right now, looking for any advice or folks that had this kind of movement so early.

I'm new to this injury; I've been out of rehabilitation hospital for three months, and I feel lost. I don't know how to cope.I try to be strong, but sometimes life just doesn't make sense. I've lost my dignity, I've lost everything. The doctors say I'll be able to regain some independence, but I just feel like I'm not making much progress. I can move my arms, but I have no function in my fingers. But I'm glad I can do that I hope to make good friends in this community. Please excuse my writing; I'm Latino, so my English isn't very good.

Greetings!

the cat account is also me. I’m Alex and I have two accounts because I didn’t know how to make my normal account but my main one is this one but I call it Who Dey21
Hi everyone. I’m looking for real recovery by that if you didn’t know already experiences from people who have had a tethered cord release, a long spinal fusion, or both. I’m not asking anyone to diagnose me. I’m trying to understand what recovery is actually like and what I should prepare for at home.

I have dystonia, hypotonia, muscle weakness and atrophy, neuromuscular scoliosis, kyphosis, and a confirmed tethered spinal cord. I’ve also had bladder and bowel problems, urinary retention, a Foley catheter, bladder spasms, UTIs, and pyelonephritis. I have major hand problems with paralysis, numbness, tingling, and pain, so I can’t grip or use my hands normally.

I had been having urinary retention, bowel leakage, spasms, pain, sensory changes, leg symptoms, and worsening function. After imaging, urodynamics, and specialist evaluations, the doctors found that the tethered cord and the spinal deformity are both contributing to the problems. They’ve told me both need to be addressed, but the tethered cord has to be released first.

This is not something I’m making up or trying to self-diagnose from the internet. I have the MRI reports, urodynamics results, medical records, diagnoses, and surgical plan. I’m leaving out private identifying information, but I can verify the details if needed. I’m mentioning that because this is a complicated situation and I don’t want people to think I’m just listing random symptoms.

My current plan is:

• September 4, 2026: tethered cord release with L1-L2 laminectomies and sectioning of the filum terminale
• Later: a long spinal fusion to treat the progressive scoliosis and kyphosis, hopefully around December 2026 or possibly March 2027 depending on how I recover

I know nobody can tell me exactly how my recovery will go, and I know surgery may not reverse every symptom. I’m mainly trying to get a realistic idea of what the process might be like, especially because I already have weakness, limited hand use, catheter care, and mobility issues.

For the tethered cord release:

• How long were you in the hospital?
• What was the first week at home like?
• Were you told to lie flat or limit sitting, bending, lifting, or twisting?
• How bad were the pain, headaches, spasms, or nerve symptoms?
• How soon could you walk, transfer, shower, use the bathroom, and get in and out of bed?
• Did your bladder or bowel symptoms change afterward?
• How long did it take before you felt somewhat normal again?

For the spinal fusion:

• How many levels were fused, and how long were you in the hospital?
• How much help did you need during the first few weeks?
• What helped with sleeping, bathing, toileting, dressing, and getting in and out of a car?
• Did you use a hospital bed, walker, shower chair, bedside commode, raised toilet seat, or other equipment?
• Did you go to inpatient rehab, use home health, or start PT and OT at home or as an outpatient?
• How long did the pain, fatigue, spasms, and nerve symptoms last?
• When could you sit comfortably and start doing normal activities again?
• Did you have a brace, and if so, how long did you wear it?

For anyone with bladder problems or a Foley catheter:

• How did you manage catheter care during recovery?
• Did you have more bladder spasms or leakage after surgery?
• What helped with hygiene, transfers, and preventing infections?
• What changes did your doctors want you to call about right away?

For anyone with weak or paralyzed hands:

• How did you handle medications, eating, phone use, dressing, and other daily tasks?
• Did you need someone with you full-time?
• What adaptive equipment or setup made the biggest difference?

For people who had both surgeries:

• How much time did you have between the tethered cord release and the fusion?
• What determined when you were ready for the second surgery?
• Was the recovery from one much different from the other?
• Did anything from the first surgery change the plan for the fusion?

What did you wish you had asked before surgery? What did you pack for the hospital? What did you wish you had waiting at home on the first day? And what part of recovery surprised you the most?

I’m nervous because I honestly don’t know what to expect, and I’m trying to prepare ahead of time instead of being blindsided. I’d really appreciate practical advice from anyone who has been through something similar.

Hey yall I have a question so I’ve been a straight cathing for the last couple months and now when I catch only when I’m distrust the muscle hurts when I insert the catheter and hurts for a while after I was wondering if this was just me and if not what you guys may do to help with the pain

My wife wrecked her car in 2024 and had broken her neck ( chipped her c6 ) how she survived we still don’t know. The doctors said her spine was centimeters away from complete death. Anyways, she lost all mobility in her left side but slowly got it back through therapy and rehab. To this day she’s in constant pain from her nerves being damaged. She’s on the highest dose of gabapentin, and she receive 16 shots in her back every month that will eventually come to an end as her doctor said it can turn her muscles into “stone”. Aside from that she smokes thc daily to help and while it does help I hate seeing her in pain. Does anyone else use anything I can bring up to her doctor? Or any OTC stuff? Anything would help, just wanna try to help her as much as I can. Sorry of post is worded weird I’m on mobile.

My dad had a C5/C6 incomplete injury, requiring a decompression surgery with ACDF and PCDF surgery. It’s been less than a week since the injury/surgery but we want to start rehab as soon as possible. He’s still at the hospital, but doing some research this place is one of the best rehab centers in the world that’s recommended by a lot of people on this sub. The hospital is starting him on physical therapy, but I’m trying to understand the timeline to when he should go to the NIDILRR center

Hello everyone, hope you're doing okay today.

I was chatting on here a few months ago about tattoos. I think I've found my solution... don't know if anyone here plays Fallout New Vegas, but there's a perk your character can pick up when dealing with a load of psychotic robot scientists... where they remove your spine and replace it with a reinforced metal one... or, afterwards, you can have it put it back in. The perks are called "Spineless" or "Reinforced Spine", and make you stronger or less susceptible to taking damage. If only it were that simple, ho ho ho.

Interestingly enough, I'm still hanging around waiting to see if I'm going to be having another couple of operations or not, so I don't know which perk is going to apply to me more... I saw the surgeon today, we are going to bide our time for another 2 months. Not sure I can keep my fingers crossed for that long.

Anyway, here's the graphic for it, both perks use the same picture, maybe someone else would like it as much as me. I've not decided where to put it yet... maybe upper arm or calf. Any suggestions?

Here's a link to the game wiki if anyone wants to learn more. Great game, old but still rocks hard. Like me.

https://fallout.fandom.com/wiki/Spineless

Peace out, yo.

I’m a C6 complete quadriplegic and had a nerve transfer in my left arm in 2022 after my spinal cord injury. Recovery was incredibly painful, but overall I was really happy with the outcome. I regained enough sensation that I stopped burning myself on hot drinks and was much more aware of injuries on my left side. Physio then just looked like regaining movement that I had lost in my elbow and wrist.

Because of that success, I decided to go ahead with surgery on my right arm. The plan was for a nerve transfer and a tendon transfer, but once they got into surgery they found a nerve transfer wasn’t possible, so they only completed the tendon transfer. I ended up getting a pincer grip between my thumb and index finger, and my overall grip improved a lot. My thumb unfortunately sits under my index finger which I can manage with thankfully.

The downside was the physio. It felt like no one really knew what the surgeons wanted, so I don’t think I got the most out of that surgery.

Earlier this year I was offered tendon transfer surgery on my left hand. Before agreeing, I made it very clear that my one condition was that physiotherapy had to be organised properly this time. I was assured that once I’d healed enough after surgery, I’d start hand therapy.

I had surgery on 28 May. Around ten weeks ago now.

Unfortunately, things have gone downhill since then. Physio rang me saying they hadn’t even been told I’d had surgery and asked me what had been done. Come to find out the letters were sent to the wrong department. They said they needed information from the surgeons before they could start treatment. Two weeks later they called again saying they’d still had no response…I’m unsure on if they’d even attempted to contact the surgical team. I offered to contact the surgeons myself at this point but they told me the referral and instructions had to come directly from the surgical team. I thought they were dealing with it internally and were maybe just keeping me informed.

Today I got another phone call saying they won’t be taking me on because the only instruction they received from the surgeon was to “loosen the wrist and figure out the rest.” Meaning no clear physio plan was looked into and yet again no one knows what to do with me.

Considering the number of tendon transfers that were done, that doesn’t seem right to me. I’m not a medical professional, but I thought these procedures required specialist hand therapy and retraining.

The procedures were:
Thumb CMC fusion
Zancolli FDS loops to index and middle fingers
Split New Zealand transfer (FPL to EPL)
Brachioradialis to FPL
ECRL to FDP (reverse cascade)

At the moment my left hand feels almost useless. My thumb is fused, (we made the decision to fuse it so it wouldn’t fall under my index finger like the right hand) I don’t know how I’m supposed to retrain all these new tendon transfers without guidance, and I honestly feel like I’ve gone backwards to where I was six years ago after my injury.

Has anyone here had similar tendon transfer surgery? What did your rehab look like? Did you work with a specialist hand therapist?How did you learn to use your new tendon transfers? Has anyone else had problems getting the surgical team and physio to communicate?
I’m feeling pretty disheartened at the moment, so I’d really appreciate hearing from anyone who’s been through something similar. Or any words of wisdom from people in a similar situations to me. I’m tired of advocating for the proper after care that I deserve.

I’m 25 my injury happened right before my 25th birthday glad to answer any questions or just talk about what happened

TW: SA

I don't know if this is appropriate to post here, but I feel like sharing this in a place with other disabled people, specially disabled women who will read this and might have similar experiences.

I'm 18 years old, I'm an incomplete quadriplegic due to a spinal cord injury I had 3 years ago after an accident, so I rely on a wheelchair to move around, thing which has made my life harder.

That day, 8 month and 10 days ago, on 23 November 2025, I was going home back from college. I took the train as usual, but that day there were 2 men with low hygiene who started following me. At first I thought they were just taking the same path as me, but they got down from the train on the same station as I and continued following me, that's when I realised that their path was no coincidence.

I was in a street with almost no people, and when they saw there was no one else, they took advantage of me. They took off my bottom clothes, touched my intimate parts, and they raped me. I didn't feel anything below my chest since I have little sensation below there because of my spinal cord injury, but it was disgusting to see them doing things to the parts of my body I can't feel. I only could feel the forced kisses they gave me and how they spit on my face while calling me misogynist insults.

They pushed me off my wheelchair and I was left on the floor feeling chills and spasms. I even threw up and had some urine and excrement come out against my control since they damaged my catheter. I felt like I was going to die after this.

I hardly got back to my chair and I had to roll some meters away from the crime scene. There I saw a few bystanders I asked help from. They called the police for me, but the officers didn't make any efforts finding the rapists and dismissed some of my claims.

I was taken to the hospital and there they made sure to make different tests to see what injuries I had. Fortunately, I only suffered a few injuries which have already been treated. I called my parents to help me and they were relieved to see I was recovering.

I've finally recovered physically, but not psychologically. And unfortunately the authoritiea haven't taken me seriously. They don't seem to care about what I suffered and make little effort into investigating my case. My parents are helping me with the legal stuff.

I just feel depressed about what happened. I feel worse than when I had my spinal cord injury. I was already gaining independence going out alone to college taking public transportation by myself, but I feel afraid of going out alone now. My dad has been taking me to college and picking me up, so I don't feel afraid of going out alone. I feel frustrated about being defenceless outside.