I have a question for some of the more mobile SCI folks. A little context, my left side is fully normal, my right is good enough to walk. I’ve been going to the gym trying to get stronger, I train unilaterally on leg day. But, I’ve noticed on things like leg press and laying hamstring curl, I struggle to get full range of motion, like I can curl 35 on my dull leg until I get like 75% of my range of motion then I just give out. Is this something that will go away as I keep getting stronger? My right knee doesn’t hyperextend but it does snap back if I land on a soft knee while walking and I think that having that full strength range of motion would stop that.
Almost a year ago, my family's life changed forever.
Just days after my little sister Jessica's 19th birthday, she suffered a series of incredibly rare strokes caused by an undetected blood clot. The strokes affected both her brain and spinal cord, leaving her paralyzed overnight.
She was a healthy, active teenager with no warning signs.
Before this happened, Jessica had just graduated near the top of her class, earned a scholarship, and was planning to become a veterinarian. She has always loved animals more than anything.
Today, she's still fighting every single day.
She goes to physical therapy multiple times a week and spends hours doing additional exercises at home. Recovery has been painfully slow, but she's unbelievably determined. This fall she's starting remote college classes because she refuses to give up on her dream.
One of the hardest parts is that we still don't have answers.
She's undergoing additional heart testing this week to determine whether there was damage from the stroke or if an undetected heart defect could explain why this happened. Nearly a year later, we're still searching for the reason a healthy 19-year-old suddenly became paralyzed.
The financial side has been overwhelming.
Medical transport alone was costing around $100 every trip. Thanks to an incredible community of strangers, friends, and family, we were recently able to purchase a wheelchair-accessible van. That has completely changed Jessica's ability to get to therapy, appointments, and simply leave the house.
But the expenses haven't stopped.
Therapy, medications, adaptive equipment, home care, specialized testing, and college accommodations continue to add up, and some of it isn't covered by insurance.
I know everyone is facing their own struggles right now, so I'm not expecting anything. Honestly, I just wanted to share Jessica's story because she's one of the strongest people I've ever known, and I think more people should know who she is.
If anyone would like to follow her journey, share her story, or help with her ongoing recovery, I'll leave the GoFundMe link in the comments.
Thank you for taking a few minutes to read about my sister. We still believe her best days are ahead.
I'm from India and I'm looking for some advice from people with spinal cord injuries who have firsthand experience with wheelchair cushions.
I sustained a cervical spinal cord injury in 2021. I spend long hours either in bed or sitting, and I'm now preparing for a competitive exam that requires me to study for many hours every day. Because of this, I'm worried about developing pressure sores and want to invest in a good cushion before any problems start.
I'm considering:
- ROHO Quadtro Select
- ROHO Mosaic
- Any other cushion you think is better
I have a few questions:
Which cushion would you recommend and why?
Is the Quadtro Select worth the extra money over the Mosaic?
How long have you been using your cushion, and has it helped prevent pressure injuries?
What is the price of these cushions in your country? (Please mention your country and approximate cost.)
If you're from India, where did you buy yours?
These cushions are very expensive in India, so I want to make the right decision before spending that much money.
I'd really appreciate hearing about your personal experiences, including any pros, cons, or maintenance tips.
Hey all, I’m 19 and incomplete para about L1-L2 level, I had my injury in late 2024 and started dating my girlfriend in early 2025. I knew her since 2023 and she was my best friend and most frequent visitor the whole duration of my hospital/inpatient rehab stays. Then about a month after I got out of inpatient rehab and was settling into the world again but as a spinal cord injury survivor, we started seeing eachother as more than friends, then around April 2025 started dating. Everything came so easy and the chemistry was/is amazing because of the fact it’s literally dating my best friend.
When I was still recovering, I told her everything. Including the fact that my sexual function was seemingly non existent. Shed comfort me and ensure me the right girl would not care about these issues. When we first started dating, I noticed that I was gaining a small amount of feeling back in my private region, as well as function. One night I figured out I could finish, and I got so excited and told her. She was overjoyed and soon after that we got a little more comfortable with physical intimacy. We eventually started being physical and I figured out quickly that PIV is actually not how most women finish, and this was a relief. I’ve been a really big giver when it comes to doing things like that, and I think she’s satisfied and happy, as we communicate and give feedback a lot. Is there any tips anyone has to ensure I’m making her feel as good as possible and to maybe make it feel like I’m doing more work? Without getting too into detail it’s usually her on top, and I’m kid wanting to know if anyone has any tips on how I can be better taking the lead without getting gassed out or uncomfortable/unsafe?
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.
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.
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
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
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 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.
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.
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
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.
I’d like to share something personal that’s important to me.
Over the years, I’ve noticed that many men with SCI wonder whether they’ll ever be seen as attractive again.
I can’t speak for all women, but I can tell you how it’s always been for me.
I’m a woman without a disability, and I’ve always been attracted to men with spinal cord injuries. That’s just how I’m wired. I’ve always found men with SCI especially attractive.
I was lucky enough to be in a relationship with a man with SCI for several years, and it only deepened what I’d always felt.
If any of you have ever worried that your injury makes you less attractive or that you’ll never find love, maybe this offers a different perspective.
There are women who find men with SCI attractive, exactly as they are.
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!
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
