r/spinalcordinjuries

Hi, I’m around a year and a half post injury and I’m dealing with a lot of pressure from my parents about walking. Im 19 and live with them. I care more about learning to drive, do adaptive sports and just trying to adapt to life in a chair. My parents say I’m giving up by doing this instead of doing intensive rehab to start walking, and keep comparing and sharing stories of other paraplegics that “recovered”/ didn’t “give up” and that I’m not trying hard enough. I guess I just don’t care as much about walking as much as I care about trying to live my life and they keep telling me I’m making a horrible choice and act like it’s weird I feel that way. I was wondering if anyone else has had something similar, I also keep seeing these stories online about people who didn’t “give up” and pushed themselves to recover and I feel like it makes it seem that if you don’t you just didn’t try hard enough. I know this is a long post my bad, I’m new to Reddit

Hello everyone, hope things are going well for you today.

Something small I want to complain about: although dropping things on the floor isn't quite as much of a Big F*cking Deal as it was in the weeks and months following my injury, it's still more of a hassle to pick them up than it was pre-injury. You just deal with it, it's fine.

But why do I seem to drop MORE stuff on the floor than I did pre-injury? I swear to god, before it used to be like one-in-a-hundred that whatever you went to grab or move or adjust would topple onto the floor. But now? It feels like a 50/50 chance that it's going down whenever you interact with something.

It's probably one of two things... either my hand/eye co-ordination or spacial awareness took a bit of a knock at the same time as my spine, or the faeries enjoy dicking around with more things than they used to just to mess with me.

Please share any of your own small complaints you've had recently. Cheers.

Does anyone have their own tips about preventing pressure sores, I’m new to having a spinal cord injury and I wasn’t taught much about prevention , checking skin ect/ products. There’s so much different information online it’s overwhelming and I’m so worried about developing one especially because I haven’t been doing much as a should to prevent them

https://www.instagram.com/reel/DXfl9tYkSVw/?igsh=ZWM3NXMzemlrejk3

Saw this post and I'm super happy for him that's awesome that he's gotten that far. I can't help but see the caption “stoked with how far I've come especially with my level of injury” and think to myself level of injury matters so so, but Asia score is much more important in determining recovery. Some of the comments too, like I saw one that said “they told me I would never walk again. fuck what they say” and another that said “anything is possible if you grind.” Sometimes I think people don't understand that's not really how it works. If that was the case we'd probably see 90+% of paralyzed people walking again😂 I'm sure if it was a matter of hard work and not listening to what the science says, most SCI people would walk again. Anyways, just curious what others think about stuff like this.

I’m getting burnt out. My fiancee is a T-12 incomplete and honestly I think I am burning out (I am also her caregiver). I work 40 hours a week or more sometimes (not including caregiving hours), she recently out of impulse got a big dog that she can’t take care of or take out for walks so I have been the one feeding the dog, waking up really early to walk the dog before work every morning and then after work, giving the dog baths just basically taking care of the dog, we both agreed to get a dog when we got a bigger place. Having to deal with house chores cause she has been sick or her body is just hurting and she can’t move. And since she is sick or her body still really hurts also she got a loaner chair recently so the brakes are like big, she can’t transfer to her own wheelchair by herself or get in the shower by herself. She stays up all night then I end up sleeping very late and having to get right back up again early. I don’t know, I can’t tell her because I don’t want to spark up an argument about how she feels like a burden when in reality she isn’t, I do love her but it is hard to tell her how I have been feeling recently. On my days off, I will stay up with her (not on purpose) cause she is an insomniac and then the next morning she would be knocked out cold and I would be making appointments for her. And she recently asked me to stop working doubles but honestly I don’t think I want to, the time I have from work is my peace when not at home. My sleep deprivation has gotten so bad both of my eyelids have started to twitch. Some days I just want to go home and take a nap but have many things to do also she has me run a lot of errands as well. Any advice would help. (Sorry for the grammar, I am genuinely tired)

My soulmate was a C5/C6 incomplete, been in the chair for over 20 years. He used to reply here in the threads to some of you. He was killed last month by an impared driver while he was on the way to a doctor's appointment.

We starred talking almost 5 years ago on reddit, and met for the first time 2.5 years ago. I fell in love with him so fast from the early days of us talking online, before I knew about his accident or how he looked. He was the strongest, most kind, loving and handsome man I have ever met. He was the love of my life.

We were the absolute perfect match. I wanted everything with him, the simple life, just being together.

I don't know if this is allowed here, I am just screaming into the void.

I have noticed since my sci that my Systolic bp and diastolic bp are normal but my puls sits around 115 and i wonder how you are experiencing

Hi my injury level is t5 complete and I lack trunk control but I want to get a new car and I’m just looking for some advice on some things I should be looking at in order to make transferring in and out as easy as possible. I currently struggle with this. I’d really appreciate some car suggestions that anyone may think will make my life easier.Ive been told a 3 door car would be ideal but I’m just looking for more advice right now to weigh out all my options in order to make the best decision. Thanks.

Kind regards.

My ex just broke it off with me recently. Most of the women I’ve gone on dates with knew me and who I was before my SCI. It’s getting to the point that I’m scared I will never have a wife and kids, and that’s my only goal in the world. Literally only family, but how do you meet able bodied / disabled women?

Hey guys so I'm having a problem lately. I've been to a physical rehab about a year and a half ago to learn more on doing for myself. I had to leave early because of wounds I had from bed sores. Since then I've had a hoyer lift at home. I work out regularly to build strength in my arms but I do have tremendous balancing problems as I am a t4 sci. But I cannot lift myself up even an inch for the life of me. It is really hard to try to transfer. Is there any tips anyone could give me? Maybe a trick you've personally learned to help you with your transferring? Please I do not want to rely on a hoyer transfer any longer. I've had sci for 28 months, and I've been trying but I must be doing something wrong? Thank you all. God bless

Guys I’ve been battling my bladder for 2 years now and I don’t know what to do next. Between over production and bladder spasms it has been hell always having to stop what I’m doing to clean up over and over again.

I’m T9 incomplete and 2 years ago I realized that sometimes I’ll go days where I produce 300-400ml anytime I cath (every 4 hours) and then it spikes and I’m producing 500-800ml of clear urine. This spike happens especially at night and is very unpredictable causing me to have multiple accidents a night. Then also some days my bladder decides it wants to spasm just cause and I’ll have accidents back to back within the time in between each cath (4 hours)

I’ve tried Oxybutynin, gemtesa (insurance stopped covering it), and myrbetriq to no avail. I’ve done the urodynamics test (“looks fine” my doctor said). I couldn’t find a urologist specialized in SCI in my area so it’s been hard to really get a clear diagnosis. Now they want me to try another drug that I’m almost positive won’t do a damn thing.

Please help!

I'm almost 3 years post injury and I find new daily things that I wish I had been doing since day one. Complete C5 injury.

Couple examples: 10+ minutes of stretching, taking vitamins, stand up frame daily, going outside, etc.

Had an appointment at Cleveland Clinic yesterday and left feeling pretty defeated. I explained that my bowel program keeps getting worse and is barely functioning at this point. I spend hours every day dealing with it, and between that and the AD symptoms, I just feel awful most of the time.

What’s frustrating is that it feels like every step forward just turns into more testing, more appointments, and more waiting without many real answers. I told them I’m reaching a point where I can’t keep living feeling this sick all the time. We talked about the possibility of a colostomy, which is something I never wanted to seriously consider, but it’s starting to feel like it may become necessary.

The main plan right now is more testing and a colonoscopy to try to figure out what’s happening. I know they’re trying to help, but mentally and physically this whole process is exhausting. Sometimes it feels like my life is controlled by my bladder and bowels instead of me, and that’s a hard thing to accept.

I'm not 2 years into my injury yet. T5-T9 incomplete as of July 2024. I see people posting in comments that they are med free. I would love to be med free, but when I mention it to my rehab doctor, I catch a glimpse of a horrified look before she can compose herself and she starts ticking off the "why's" to me.

My questions are:

Did you or do you still struggle with spasticity?

Do the symptoms calm as you wean off?

How do you cope with pain?

Is it related to my level and type?

Did you start on meds and then progress to no meds? If so, how long ?

I think I'm maxed out on oral bacflofen. I'm close on tizanidine. I'm stepping down on lyrica some due to the weight gain. My body is spastic even with the meds. I hate taking meds. Especially meds that mess with my head. That gets confusing when you're also worried about AD. It's like, when did I take my meds? Is fuzzy normal right now?

Thank you for being willing to share your experiences

Today marks 20 years since my SCI(T8 complete). Normally, I just kind of forget about it and remember it the next day. But I guess it being the 20th year feels significant. I was 7 year when it happened. Doctors said it was a tumour in my spine(Didn't even know what that meant back then). I am 27, and almost all of my life has been in a wheelchair. I sometimes wonder if it was better it happened early or if it should have happened later in life, at least when I had enjoyed life a little. I see people walking and have forgotten how it feels to walk. The sensation of urinating is now foreign to me. I remember when I was a child, occasionally I would bed-wet, and later when I woke up, I would remember that I was dreaming of urinating when it happened, and the feeling in the dream was so freeing 😅. Now there is nothing. It's funny, but it is the basic sensations that I miss. This might sound weird, but I miss the feeling of having an erection. I really didn't like it back then because I felt so weird about it, just waiting for it to go down. Such an irony. I am just wondering how my life would be in the next 20 years.

I can't tell anyone close to me this because I don't want the extra sadness they might feel because of it. I know my mother knows the date today, but I don't want to even mention it. Knowing her, she will remind me of it tomorrow, thinking I forgot it. In all this, I worry about her more because I am an only child and she is my primary health giver. You worry about your own issue, but there you have to wonder what the other person must be going through too, I honestly can't.

Oh yes, and I wonder what orgasm feels like. Well, here ends my venting

Has anyone used the ferticare 2.0? And has it worked? Im T9 complete. I got it in hopes to get my big O after years of not feeling anything but it hasnt done anything so far. To be fair, this is only my second attempt. Do i have to have an erection to work better? Idk😭

I just made a Bumble and I've received one match in 24 hours. Obviously, I'm not expecting many, but I was curious what I should expect being an average looking guy in a power chair.

Also, if you could share your experience with online dating that'd be greatly appreciated!