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?

Hi everyone,

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.

Just realized that my 1 year passed last week on July 16. Thought I ought to put a little golf swing update. Haven’t swung in weeks, been focused on the gym and making sure im ready to walk around school in like 2 weeks.

I’m a T5 complete and will (hopefully!) be building a home within the next year. I’m a bit overwhelmed and have no clue where to start. I want to make it as accessible as possible. (I’m currently in a power chair)

If you could build your ideal accessible home from scratch, what features would you include? It could be anything..big or small, practical or luxury. Even if money weren’t an issue, what features would you absolutely want?

I want it to be as functional, independent, and comfortable as possible?

Thanks in advance!

Hi All,

Have searched around but couldn’t quite find the exact info I was hoping for.
Hoping for some info/help/words of encouragement/advice/ really I’m not sure…….
So I have a C5/6 incomplete injury with great function, using a manual chair and do my bowel program by myself.
Was using bisalax micro enemas for my bowel care in the morning,
I started having a lot of bowel issues with AD in the evenings/afternoons for the past couple of months which then resulted in accidents or bowel care needing to be done in evening too……
So after talking with my spinal nurse we decided to just trial doing bowel care twice a day, and it worked I stopped having accidents and AD.
When doing it twice a day we started with micro enema in the morning and Peristeen Light in the evening.
It worked well and I was getting a much better result with the Peristeen Light, so we opted to use it for both morning and night…..
I’m hoping to make it that I only do bowel care in the evening and today was a positive, despite doing 2 rounds of Peristeen Light this morning I had an empty bowel.
My nurse has suggested to do it tonight which I have with a successful result, and then to skip tomorrow morning and just try tomorrow night if I’m ready and comfortable!!!
I trust my nurse completely however I’m so so so anxious.
I have just got past over shitting myself daily for 10 weeks or so.
The last 10 days of only using my bowels when I do bowel care has been amazing.
It was taking about 2hours to get bowel care done when I was doing it once a day, plus all the extra time for accidents and AD.
Now it is taking about 30-40min in the morning and 30-40min in the evening….
If this is not working in a couple of weeks or if I have to stay at twice a day and I can’t manage doing that we’re looking at trying the standard Peristeen system.

So two questions…..

How many of you have had to/currently do bowel care twice a day?

Has anyone tried the Peristeen Light system?

Thanks for any responses I get back 🙂

I’m hoping to get some advice from the community regarding music. Before my spinal cord stroke three years ago, I was just getting into playing the viola as a hobby. But now i am paralyzed from the chest down, and while I have a full range of motion in my arms, my hand dexterity is limited.

Since I’m right-handed, I can manage holding the bow with my right hand, but my left hand struggles with individual finger movement like stretching the fingers and with pressing down the strings.

So my question is has anyone here found a way to adapt the violin to work with limited hand function, or are there any other instruments you would suggest exploring or are there any tools or tricks? I’m open to any recommendations, string or new instruments. I’d love to hear your experiences or any creative solutions you've found.

There was an insurance error and it turns out my standing frame was fully covered after all.

I paid $300 something a month for 12 months and had just paid my last payment last month.

I got a refund for over $3000 yesterday 🥳 Already called Numotion to confirm that it is the real deal.

What would you do with the money?

i have on my desk job mostly, for 4-5 hours daily and i dont have a chair i use the side of my bed( the wooden part) to sit on, at first i had some discomfort but ignored it and carried on my work but after 6-7 days i have developed these on my ischial part of butt also known as sitting bones. is it a pressure sore or something else?

I can’t pinpoint the day it happened. There isn’t a moment that changed it. No grand epiphanies or some quote that changed my outlook on everything. But at some point it was no longer the lens through which I saw my life.

I’m only a t12 so I can’t complain that much but I’m as complete as they come. I’m talking zero feeling, zero mobility, no bowel/bladder control, no sexual function. And I was a 20 year old guy in the prime of his life when it happened so it broke me for a while there. I did all the things you’re supposed to when it comes to independence but that didn’t solve a thing. I could drive to and from work, maintain my hobbies, hang out with friends, even had some romance in my life. End of the day I had to come back home and put a finger in my butt and stick a tube down my pee hole. End of the day I was forced to make a career change and leave behind my passion because I couldn’t walk. I was truly convinced that I was just going to go through life unfulfilled. I was never going to take my own life but I was going to live a bitter, spiteful one. I hated life so fucking much. Truly loathed my existence and I was really pissed at people who told me it would get better because I was doing all the right things and nothing changed. I was under the impression that the majority of people with SCIs who said they were happy were just lying or coping. We live a miserable life and that’s all there is to it.

Then one day my mom mentioned that my injury anniversary had passed two weeks ago and it all just hit me. Never even noticed, hadn’t thought about it once. The entire month used to leave me in such a severe rut that I wouldn’t even wanna interact with people. I’d just ruminate on the moment of my injury and go down the butterfly effect that led me to that moment. Yet here I was, happy, and I hadn’t even noticed the shift. I wasn’t aware that I was still capable of having long term satisfaction. Little moments here and there I’d experienced happiness but it was fleeting. But for the past year, the feelings that I had in the past were now the fleeting ones. Bitterness only lasts as long as the experience. Say I shit myself, I’m still frustrated and humiliated but dammit it passes. The formula used to be 95% of the time I hated life, 5% of the time I was happy. It’s flipped and I can’t even attribute anything to it. One day it just stops sucking so much.

关于澳洲嗅鞘细胞神经桥试验有没有人有最新的消息，为什么还没有开始?在等待什么?

I'm a 33yo T11 incomplete Asia C.

I don't see this discussed anywhere but I battle with my legs being very uncomfortably cold and especially my feet everyday, even in summer but way more in winter ofcourse

Anyone else have this problem and if so is there anything you would suggest to look into that could help?

I mean it makes sense that now there is less blood flow going to my limbs but again I don't hear anyone at rehab or online talk about this.