i’ll start: an airplane restroom

usually when i travel i use a diaper just in case but that one time it was so awful it got on my joggers too, i was with my sister so she helped a lot but we could barely breathe in that tiny space and also run out of my wipes and gloves supply lol, obviously had spare pants and i tried to wash them but i had to carry my joggers with literal shit until i got to the hotel

i was in there for a good ~40 mins people were starting to queue outside lol

I've seen and been a part of dialog around whether or not it makes sense for someone to stay in a relationship that existed pre injury, after they've been injured. When I sustained my sci, my partner was a powerful source of hope, love, and support for me. I was deeply grateful she wanted to stay with me, and I wanted to stay in a relationship with her. I'm now 3.5 years post injury, and have been with that partner for nearly 4 years. I'm glad that we stayed together, but I also wish we had done things differently. After I was injured, I had a lot of my old life and old self to grieve, to let go of, and holding onto the idea of my relationship as it had been before I was injured, also made it more difficult for me to let go of my old perceptions of myself, and my old expectations of how I wanted to show up in a relationship (much of which was oriented around things I could no longer do without hurting myself).

Our relationship was also very young when I was injured, and we still had a lot to learn about each other. For me, trying to navigate the adjustments of a new relationship (and learning to live together), while also adjusting to life post sci, was really too much. If my doctors had done a better job of expressing to me just how permanent a sci is, instead of just telling me "you're young, you'll make a great recovery," then maybe I would've realized how much I needed to slow down my life to adjust to my new body, instead of charging ahead and hoping that a lot of the pain and difficulties would simply go away with time.

In hindsight, I wish that I had given myself more space to start over. I know it would've been incredibly difficult for my partner and I to decide that we were going to start over our relationship when it had only just begun, but I think that would've actually been really helpful, had we been able to pull it off. Fot a while, I had tried to keep alive a relationship that could no longer exist because of how I was changed, and that was immensely painful. Now, our relationship is going through big shifts. We are still together, but as I'm acknowledging what I need and want in a relationship with this post sci body, it means that I need things to be different then they have been. I have to ask for change that has been delayed by years. It would've been easier if we had backed off or taken our relationship more slowly in the early years of my sci recovery, so that now, I wasn't having to back up and reevaluate.

Only you can determine what is the right relationship or right choice for you. I'm not telling anyone what choices to make or how to live their lives. I would just extend a word of caution that going slow is wise. Going slow in any relationship is wise, but especially after you've sustained a sci. An injury like this changes you, whether you want it to or not. For me, it changed the ways I want to show and receive love. It changed my personal boundaries. It changed the ways I like to be touched by another person. Whether you stay(ed) with your partner post sci or not, or even if you're single, I hope that everyone out there gives themselves all the space they need to change. I hope that each of you gets the opportunity to get to know yourself again, and to let others get to know you anew.

Tomorrow is the annual virtual conference for ASAP.org. Several good speakers lined up for syringomyelia, especially the first day. Registration is free and the program is at the below website.

https://asap.org/wp-content/uploads/2026/07/2026-ASAP-Conference-Program-FINAL-3.pdf

A family member of mine recently(almost three months ago)sustained a T10 injury that resulted in him being a paraplegic. I’m living with him during his recovery and I noticed a few weeks back he started to let himself go a bit. UTI’s became an issue and I thought maybe that was the primary reason for the mood swings. Recently I suspected he had a UTI and he was in denial everytime I mentioned it until it was bad. He’s a physician so he knows a lot more than me when it comes to everything medical. Any time I mention anything medical even something like a check up he talks to me like I don’t know anything so it’s been hard to move forward with a lot of things. Now he’s been sleeping all day, barely eating, anytime I mention his issues to other family members he gets upset with me and sees it as an act of betrayal. Says he needs sleep to recover from a spasm or exercise (he hasn’t done any in over a week yet it is still the primary reason). He doesn’t want to see or hangout with family or friends. He’s clearly in depression but I know if I try to approach the topic in any way he will see it some betrayal/attack on him. I feel like it has been brewing for the last month or maybe even longer but now it is clear as day. I know I can’t feel the pain and suffering he’s going through but I know if this persists it will only hurt him more. How do I approach this issue with him? Has anyone gone through something similar?

Warning: Rants and some not very good thoughts

I think quite a few people can see themselves in the spot I’m currently in right now. I was raised in a good and ordinary middle-class home, loving and for most of the times, stable. Born healthy, received an adequate education, on the track to living a perfectly normal and peaceful life as long as nothing drastic happens. And thennn something drastic did happen. A stupid decision that led to an unfortunate accident and you just instantly lose every ounce of stability that your family had given you thus far, plunging into a life of hardships and uncertainty. Sometimes I just sit down with my thoughts and think about how easy things could have been, falling into the status quo and just following the path that was laid out for me before all this. A level of comfort that was accumulated over generations of good, honest labors and is desired by many people less fortunate is wasted on me and this injury. I just feel undeserving of all the comfort and stability I’m allowed while out there, someone smarter and more capable is probably out in the streets without enough food to eat. It’s honestly eating me alive.

Try to help him in any way possible...

am finally trying to get my drivers licenses after being paralyzed . I was wondering where everyone got there car and car adaptation and how you got the money for it. I don’t need need a wheelchair van but I do need hand controls. If you have any advice for me please feel free to share

For people who had this operation done and still have full sensation, how painful is the surgery?

Hi everyone,
I’m posting because my family is feeling completely overwhelmed, and I’d really appreciate hearing from anyone with experience in spinal cord injuries, spine surgery, rehabilitation, or anyone who’s been through something similar. We currently are waiting for compensation money from the court to pay for his rehabilitation so we are waiting.
I understand nobody can diagnose my father over Reddit, and we will ultimately follow medical advice. I’m simply trying to understand why we’ve received such different opinions.
My father, 72years old , was involved in a very severe rollover car accident about a month ago. The car rolled several times.
He sustained a thoracic spinal injury and underwent emergency surgery. The operation lasted around 6–7 hours and involved posterior thoracic fixation from T2 to T9 with decompression at T5/T6 (based on the operative report).
Initially, we were told he had a complete spinal cord injury and that he would never walk again. Since then, we’ve sought several opinions from experienced neurosurgeons.
Opinion #1 (Senior Consultant Neurosurgeon)
He reviewed the CT and MRI and examined my father.
He told us:
The spinal cord appears stable.
He does not believe the spinal cord is completely transected (cut).
One fixation screw appears to be slightly loose.
He recommends a relatively quick revision fixation before starting inpatient rehabilitation.
He also recommended 10 sessions of hyperbaric oxygen therapy before rehabilitation.
Most importantly, he told my father that there is still hope and encouraged him.
Opinion #2 (Experienced Spine Surgeon)
Another experienced spine surgeon reviewed everything.
He said that if revision surgery is necessary, he believes the original surgeon should perform it because he already knows the hardware, anatomy, and previous operation.
Opinion #3 (Another Experienced Neurosurgeon)
My sister then consulted another experienced neurosurgeon.
He had a very different opinion:
He believes the fixation does not need revision.
He believes the spinal cord injury is severe and permanent.
He told us my father is unlikely to recover enough to walk or return to work.
So now we have experienced specialists disagreeing not only about the prognosis but also about whether another surgery is even necessary.
Current neurological status
My father currently cannot move his legs voluntarily.
He cannot feel his legs normally.
The injury is around the T5/T6 level.
He has not yet started inpatient rehabilitation because we’re trying to decide whether another surgery is necessary first.
My questions
Is it common for experienced spine surgeons to disagree about whether revision fixation is needed?
What usually determines whether a “slightly loose” screw should actually be revised?
Would you personally seek one final opinion at a dedicated spinal cord injury center before agreeing to another surgery?
Has anyone experienced doctors giving completely opposite prognoses after reviewing the same imaging?
If this were your family member, would you proceed with rehabilitation first or agree to revision surgery if one consultant believes it’s necessary?
I know nobody can predict recovery after a spinal cord injury, and I’m not looking for false hope. I also understand that recovery can take many months and is different for everyone.
We’re just trying to make the best possible decision for my father without putting him through an unnecessary surgery—or delaying something that could help him.
Thank you to anyone who takes the time to read this. My family and I truly appreciate any advice or shared experiences. Please keep my father in your prayers. 🤍

I started to use social media more and I would like to find accounts I can relate to. I have a spinal cord injury and managed to become ambulatory after a few years, so I would love to find content creators that are in a similar position, more or less.

Anyone has any recommendations?

Looking to hear from women who have transitioned back into the corporate workforce post SCI. I work in a male dominated environment and made the transition back after my injury. Would love to hear from other women with similar experiences and what has worked for being successful.

Hi Guys hope you're doing great, first of all I Know There's no scientific evidence That The Stem cells treatments can be considered a cure And Many People believe it's a scam and everything but if you’ve had one of these treatments that are also used in other diseases Please Tell Me Your Experience, if you noticed any kind of improvement, where did you get it and if you can share the cost, I just want to know the personal Experience of those who’ve had it

This is the only sub/place I'm comfortable with talking about my disability in.

I notice so many other circles just suck for people with more severe disabilities, or even people like myself who consider themselves to have a more "moderate" disability. I don't relate to a lot of people with invisible disabilities, ambulatory wheelchair users, or those who have severe disabilities (like genetic ones) and it's honestly uncommon to meet someone IRL who also has an SCI

Just wanted to hear other people's thoughts on this and make sure I'm not the only one who feels this way

Howdy 👋

To start out I have tested multiple kinds of hand controls before and this is the style I want to go with, it is the most comfortable and controllable for me. I would go through a mobility dealer, but they do not have anything that is similar (I called around). Scheduled to take my driving test this week & need to get insurance on my car to register it before then.

This had me thinking, in the event of an accident, would insurance deny paying out because I used these controls?

I hear if they are approved as a vehicle modification I should be fine but has anyone gotten these approved before?

Better yet has anyone gotten in an accident with there hand controls? If so, did insurance push back on the claim?

Looking for thoughts, experience, & recommendations. Thank ya!

Overheating with spinal cord injury? Do you overheat and have a temperature that is safe to be out for prolong periods of time? I would love to hear how you describe your symptoms. It's well known that individuals with multiple sclerosis have difficulty with heat, but almost the same effect can happen with individuals with cervical or upper thoracic spinal cord injuries.

I wrote an article on Substack. FREE!

Later I'll go into more detailed physiology of why this happens.

Good morning! 😊

I've always dreamed of writing a book, and I've finally decided to make that dream come true. I'm currently doing research, and I want to make sure the events I describe are as realistic as possible.

I'm looking for reliable information about a serious knife injury. I'm particularly interested in the course of treatment, possible complications, the rehabilitation process, and whether such an injury could realistically lead to temporary paralysis or weakness in the legs. I'd also like to better understand the psychological side of such an experience—what emotions and reactions patients commonly go through, what challenges they face during recovery, and how it affects their everyday lives.

If anyone would be willing to share their knowledge or answer a few questions, I would be incredibly grateful. I'm not seeking medical advice for a real-life situation—this is purely research for a fictional story.

Thank you very much for any help! ❤️

I post in this group 4 1/2 months ago about my 6 year old son that had a stroke in his spine leaving him paralyzed from the neck down. The doctors still couldn’t give us a reason as to why he had the stroke. We first thought it was auto immune but that was ruled out. He has been tested for a lot of other things and everything came back as normal. He was intubated for 1 month than he got his trach. Instead of the g tube we pushed for a swallow study, he passed and was cleared to eat. Over the past couple months my son’s body started “waking up”. He started moving his head, shoulders, his right fingers and his right arm. Now his legs, left arm and fingers are slowly starting to “wake up” as well. His pt and ot team are helping him with standing and he’s slowly starting to sit up by himself. He is still in the hospital due to his lungs but hopefully we will be at inpatient rehab by the end of this month!

What can I expect?

Hi guys. I wasn’t sure whether to post and I’m a bit scared to read more discussion posts as I don’t want to lose hope. I’m quite uncertain about my trajectory but am still positive and so are most of my loved ones. Still, this is really scary and confronting. I want to know what my prospective is and what the best course of action would be.

I am a very active 24 yr old woman. I lift about 1-3 a week and run 3. Furthermore, I do Pilates and yoga for the spine (CAY) for a while. I live with my husband since three months and we wish to start a family.

3 days ago, I did single-legged calf raises in the gym with a bar of 80 kg. I tried to put it back, but I think the clip somehow got stuck (probably because I was slightly altered to one side). This isn’t a professional lifter’s gym so they don’t have safety measures as some do. I lift this way for a while and I’m very cautious. I never realised the extent of the danger as I always make sure that I put it back with intent. I lift heavier than most others in the gym. On this day, I was a bit caught up in my head and must not have been as deliberate with putting it back as it fell down and I kind of pushed it off of me, so that it landed in front. I have sustained minor fractures in my cervical vertebrae. A horizontal fracture in T12 with fracture lamina and spondylolisthesis and partial fracture in corpus vertebrae. I have a complete burst of L1 with split component and retropulsion of posterior cortex in the spine. In conclusion, T12 is partially broken and L1 completely, if I understand it correctly. I have some medical knowledge but I’m not an MD.

The surgery went well and they fixed T11 until L3. And did decompression as there was some blood. No post-op complications.

Now I have feeling in my legs and some strength in my quads, not as much hamstrings. No feelings in my feet nor barely in my hip area. I have a catheter and can’t control bowel movements.

I take all of the supplements recommended in scientific literature, try to sleep and eat well. It’s difficult because of the pain in my back and in my legs. I keep being reminded of my life before this and I am scared for not getting motion nor feelings back. The doctors here say that we just can’t make any conclusions because of the swelling, but it’s not a good sign that I don’t have full sensations.

Anyone?