Hello. My brother was a tall, fit, handsome, well educated (ph.d), caring person before his car accident (he was not the driver of either vehicle). After he became a quadriplegic, his fiancé left him and he had to move in with our parents. He has gradually over the past 7 years become overweight, developed a dependency on alcohol, lost interest in his appearance and most of his motivation. He rarely ever sees friends anymore. He was working online at a lucrative job but quit a year ago. I think he should quit drinking and go on duloxetine or another antidepressant that can also help with nerve pain. I have brought it up but he does not like to talk about going on an antidepressant. Does anyone have a personal story of a similar course of action helping them that I can share with him? Or know of a link, article or YouTube video talking about trying this? He is still young enough to change and I don’t want him to just give up. TIA

Im a t-11 incomplete and have been contemplating getting the mitrofanoff procedure done to improve quality of life and gain back independence. I currently self cath but it's a pain bc I can only do it from my bed due to really bad spasms and muscle tone and I'm always stressing about having accidents when I'm out and have to be back home within a few hours. If you've had this procedure done do you recommend it? Do you like it? How was the surgery/recover process like?

mine is about 20-25 kilograms and i cant drive myself cause its really heavy. i want an active wheelchair but i dont know which is more comfortable or better idk. and honestly the prices are…. expensive. i just want recommendations which wheelchair you guys use?

All of my therapists tell me that spasticity will set in, but it’s been almost a year. I’m T12 incomplete and from my understanding that’s right at the line between the two, so I’m not sure what to expect.

Does anyone else just have no motivation for anything…? I’m too embarrassed to leave my house only to go to my PT sessions, so I stay in my room all day at my desk. I’m bored all day and I have no motivation to do anything. I tried crocheting, reading, watching tv, playing games, painting, just literally anything and I get bored of it fast. I’m stuck and I don’t know what to do. I’m on the top floor so I have to ask someone to transfer me to the chair lift to roam around my house but even then it’s boring and I’m just here with my parents and sister. It’s lonely here. It’s lonely and boring at my house I hate it here. I used to live with my boyfriend but had to move back because his house has too many stairs. I just so hate my life and this stupid injury, I can’t do anything.

Has anyone here who has an SCI w/ fusion given birth? I'm 24 weeks pregnant with my first baby. Just wondering if the fusion caused issues during labor/birth or if the lack of pelvic floor function from SCI caused any issues? Would love to hear any experiences!

Edit: Fused T11-L3

L1/2 incomplete, female. SCI from a skydiving accident in November 2021. Ever since my accident, I have not had an orgasm. Pre-accident, it was super quick and easy for me, so not orgasming for almost 3 years has been hard to accept.

1. I'd love some ideas of things that have worked for others (I have tried vibrators, oral, penetration...hard pass on butt stuff because constipation HAHA!). 2. But the REAL reason I'm making this post is because I want to know if I'm the only person this happens to....If something (sexual) starts to feel really good (and in pre-accident circumstances I would've orgasmed), my feet start burning and itching uncontrollably. I have to stop whatever I'm doing because it's so unbearable.

Does this happen to anyone else? I've googled over the years and can't find anything...

Hi everybody, I’m C3 C4, fused to T1. Looking to hopefully go home soon, but I’ve been having wondering about autonomic dysreflexia at home. I’ve experienced it here in the hospital and it’s not fun. I pretty much know when is going on and I can tell someone. But it would be a lot different at home. Would that keep me from going home? House has already been retrofitted with new bathroom flooring, removal of furniture to make it easy for the wheelchair access and such I just don’t wanna have to lose my home because of autonomic dysreflexia happening to me at home. A lot of people work at my house to get it ready for me to get there. I still have a catheter and I have a bowel program. Hands are not that good. Thanks for any thoughts!

Hi all. I’ve posted details (ad nauseam) about my injury/disease in the past. I appreciate everyone here.

In 2018 Craig Hospital diagnosed me C4 incomplete as a result of a failed detether surgery. At the time, functionally, I was paraplegic with full use of my upper body, save for the fact that I couldn’t feel temperature or sharp sensations. Anyway, I am currently an incomplete quadriplegic 6 years later. earlier this year, I was hospitalized for two months after a septic infection and two strokes in the hospital. it has been a long journey so far as this has just chipped away at my ability inch by inch.

Last week, I began hospice. The syrinx in my spine is now moving into the brain stem. My hope is that the infection comes back, but if it does not then my intention is to end my life on or about my birthday in late December. This week I’ve begun the process of telling people why I disappeared six years ago and saying goodbyes. I’m feeling awfully weird and Surreal. Granted some of this may be the liquid morphine I started this week.

Wondering if anyone in a similar situation might be up for messaging or just replying here. I am not questioning my intention, but it is difficult. Anyway, obviously no one who has followed through on this plan is available for discourse. Lol but I just thought I’d throw it out and see if anyone else might have some knowledge or perspective to share.

As always, thanks!

Hello there. First of all, I’ve been posting and whining here for a while and it helped me a lot. But I’d like to mention something positive this time: I added a device in my car to be able to drive it using my hand and this is the first time for me to feel “happy” in 11 months. It’s the first time for me to say it out loud. So, I urge you to do whatever it takes to add independence in your life and it will definitely make a difference somehow!

So, now to the main topic: Transfers. I need to get better at transfers especially in and out of the car. I keep falling and can’t find the right grip. Is there any reference (videos) that actually made your transfers go from basic to expert?

As well, I terribly failed to put my chair in and out of the car so I still need help there. My chair isn’t a 7kg lightweight one, it’s probably around 14-18kg and it seems impossible to move it around with the weight and unbalance in my body.

Any help would be highly, highly appreciated.

Thanks again everyone for all the help.

Me (f24) and my boyfriend (m23) have been together for five years. 2 weeks ago we were snowboarding and he had an accident that left him paralysed from the chest down.

He is still in hospital and I have been with him most days but the last week things have been really strange between us. He’s very distant and very emotional most days which I understand of course. When I’m with him he doesn’t want to talk or do anything else and cries a lot which is very rare for him so it’s strange to see. Before this we shared everything and he was very comfortable sharing how he was feeling or what he was going through so I’m struggling to understand what he needs or how I can support him.

Yesterday his mum called me and said that I shouldn’t come by the hospital and when I asked her why she was vague and didn’t give me a clear reason other than that I shouldn’t come. I went today to see him and he was very very quiet and didn’t acknowledge me much but he held my hand. I only stayed for a couple of hours because his family was coming to see him again and he didn’t say goodbye when I left.

It has honestly left me so confused and hurt and I feel like maybe I’m making his recovery harder by being there or something. My feelings for him have not changed at all but I am still grieving the life we had been planning together and now I’m worried it had been showing in the way I act towards him. I feel so terrible right now and I don’t know what I can do to fix this. I feel so selfish for feeling like this and worrying about our relationship and future.

I was there when he had his accident and maybe he’s struggling with knowing I saw him like that or i’m bringing back unpleasant memories for him. I don’t even know. He’s very resistant to me helping him with anything now and gets upset and agitated if i ask him how he is or if he needs anything. Two years ago after a surgery complication he was bedridden and needed full time care and he never reacted this way to me looking after him. I understand it’s different but how can I change my approach so he’s more comfortable?

We used to hike, play tennis and snowboard together and he enjoys surfing and AFL a lot. All the things we do together are active so I think he’s also feeling unsure about our future in that respect. Im sure there are alternatives or variations for people living with disabilities but I haven’t looked into that yet. I don’t know if bringing it up will be a positive thing or not.

This whole situation has left me so lost. I want to support him in anyway I can but I feel like he’s putting up boundaries that I need to respect. How can I talk to him about how he’s feeling and about our relationship without making things worse. at this point I’m worried he wants to break up but before his injury we were the happiest we’d ever been and we were talking about marriage and we got a dog together. My feelings on our future together haven’t changed but I feel like his have somehow. I can’t lose him and I’m so scared that’s what’s going to happen. Please. if anyone or has advice or has gone through something similar I would be so thankful for any help

I have been a patient of transverse myelitis since 8 years. T1-T4 area effected. I can walk but have difficulty in moving out of the house. I have nueorogenic bladder and bowel so I use adult diapers whenever I go out.

I'm 31 M and I have absolutely no idea as how to react regarding the marriage. Since last 8 years I don't have any female friend as well and now when everyone around me is getting married they wish the same for me as well.

I don't know how the hell would that girl understand me and my problems. Most importantly I don't think I'm confident enough in being physical as well because of ED. I have made myself accustomed to the spasticity and burning sensations on my legs but how would I pull off marriage.

I'm thinking to remain single and should move out to other city where no one will expect me to get married.

Because if there will be no physical relationship I don't think the marriage would last. Am I right?

What's the best path I could take from here?

I am a 28yo female and in May I was diagnosed with a Meningioma at the T6-T7 level of my spinal cord that measures about 2.9x0.5x0.6cm. My current symptoms (that I believe are from the tumor) are weak legs that feel like jello or “clunky”, exhaustion after walked a few minutes and burning sensation in back. There are more but it’s unknown if it’s related or not.

My neurosurgeon gave me the option to either watch and wait or move ahead with a laminectomy without fusion.

I have chosen to move ahead with surgery and get it done and over with so I can hopefully heal and move on with my life. Surgery was originally scheduled for Halloween day but due to an allergic reaction I had from prep during the fiducial marker placement we had to postpone. I am now scheduled for late November.

What are some things that will help with my recovery? So far I have a shower chair and walker. I’ve heard I may need to get a bed rail as well since I won’t be able to bend or twist. What helps pass by the time? Any good games you’d recommend?

I’m honestly terrified of something going wrong and it becoming “permanent” But I am trying to keep a positive head on my shoulders!

@AffectionateCable385

I hope this worked but I just read a post in here regarding Quads moving around in bed.

With some arm function, this might be your solution.

For parasite, this makes getting into and out of bed so much easier.

Basic L Shaped bar that slides between the mattresses.

(C6)I’ve always sucked at eating it’s just so tedious but post injury it’s gotten so much worse. I feel like all I eat is cereal and microwave burritos. I really need to up my protein intake and overall calorie intake. What do you guys like to prepare

Looking for inserter that works with magic bullet,.

Got quad hands and looking for becoming mmore independent

I’ve been looking for a new endorphin rush. I don’t take any drugs or gamble for various reasons, and I can’t orgasm. My body doesn’t like junk food. Not really able to play adaptive sports. I do love being outdoors, but as the weather becomes colder and days become shorter, nature becomes less viable. I can only watch so many movies and tv shows. I can only physically exercise so much. I do have hobbies, but they’re more sedentary and calming. I just want to raise my heart rate every once in a while! What’s something that you enjoy that makes you check your FitBit?

Hi all. Im a C7 and can use my arms without hand function. How do fellow quads turn in bed? Is there a way without assistance?

I sleep sideways and it would make a huge difference if i could do this myself. Im looking for any techniques or assistive addons

I just recently dating someone with a c6 incomplete SCI. HE IS AMAZING!! But I am scared I will not be able to support him enough. Injury is not new, 10+ years. We are definitely in the early phases of dating, but this injury is a new world for me but looking for advice on how to support someone with this injury

I don’t know if it’s just me or does anyone else constantly have muscle twitches throughout their body? sometimes it’ll be my feet others times it’s my knees and hips, sometimes even my fingers and tricep. The weirdest thing is that I can also sometimes trigger them especially the ones in my feet and fingers. For context I’m a little over a year out and i’m C4 Asia B and don’t really have any voluntary movement in the feet or fingers.

Hello everyone, I hope you're doing well.

My name is Alec Chen, and I'm a researcher at Johns Hopkins School of Medicine. We're conducting a study to gauge the level of knowledge about available upper extremity reconstructive procedures aimed at improving arm and hand function in individuals with cervical spinal cord injuries. By collecting information on patient demographics, injuries, treatments, and overall awareness, our goal is to identify ways to enhance patient knowledge and promote self-advocacy.

Whether you're directly affected by a spinal cord injury or are a caregiver to someone who is, your input is incredibly valuable. By participating in this study, you can help shape the future of care for individuals facing similar challenges. I would greatly appreciate it if you could take some time to fill out the questionnaire linked below.

https://mrprcbcw.hosts.jhmi.edu/redcap/surveys/?s=D34LEWK8TEXNCKLH

This study is IRB-approved by Johns Hopkins Medicine. Your survey responses are securely protected in REDCap with encrypted data storage, access controls, and HIPAA-compliant privacy measures—accessible only to the IRB-approved research team. Additionally, please note that your IP address will not be stored, further ensuring your privacy and confidentiality. The data collected will be analyzed to identify trends and insights that can help improve patient education, treatment outcomes, and self-advocacy. It will only be used for research purposes and shared in aggregate form without identifying individual participants.

Thank you in advance for your participation and contribution.

Best regards, Alec Chen

What country has the best resources for someone like us?

Hello all! I’m just past a year since my injury. I’m currently on a cane but having some trouble with my feet and wondering if anyone has had the same issues and found any solutions to resolve it. I have decent movement in my right root, enough movement so I don’t have to wear an AFO but the left one isn’t much movement at all. I wear an AFO on my left foot to help with my drop foot which has overall slightly gotten better but still there. I stretch my left ankle often on a slant board as my spasms use to be pretty bad so my ankles/feet were extremely tight but been getting regular botox to help with that and it has reduced the spasms and overall tightness quite a lot. Anyways so my issue is with both my feet rolling in, more noticeable when I’m not wearing an AFO obviously and far more noticeable on the left foot. Could that be due to the lack of movement in my feet? So my feet are just like naturally rolling in. Has anyone else who is walking, had this issue? What could I do to prevent this from getting worse? Any exercises I could do or anything to help or do I just continue with the AFO and hope for the best. Thank you!

What age did you get your prostate checked? Im 32 and had injury at 20. Thanks for any input on this matter.

My husband (34) just received this MRI report. He had an incomplete spinal cord injury at the C3 level at age 9. We can’t even see a neuro PA for at least a month and we’re driving ourselves crazy with Google anxiety. Can any provide some insight?

EXAM: MRI Cervical Spine WO

HISTORY:

Chronic neck pain with history of gunshot wound to the neck.

COMPARISON:

March 25, 2016 MRI cervical spine examination

TECHNIQUE:

Sagittal T1, sagittal T2, sagittal inversion recovery, axial gradient echo and axial T2

FINDINGS:

There is increased mild accentuation of the normal cervical lordosis and 2 mm C3-C4 retrolisthesis without acute vertebral body fracture. There is increased mild C5-C6 degenerative disc disease along with moderate degenerative disc disease at all remaining levels. There is increased spinal cord myelomalacia and associated mild atrophy at the C3 and C4 levels.

C2-C3: There is increased disc osteophyte complex asymmetric to the right and moderate right and mild left facet arthropathy resulting in moderate right neural foraminal narrowing.

C3-C4: There is increased disc osteophyte complex and moderate right and mild left facet arthropathy resulting in mild bilateral neural foraminal narrowing.

C4-C5: There is increased disc osteophyte complex and moderate bilateral facet arthropathy resulting in mild-moderate right neural foraminal narrowing.

C5-C6: There is increased mild diffuse disc bulging.

C6-C7: There is increased mild diffuse disc bulging.

C7-T1: There is increased mild diffuse disc bulging.

There is no central canal stenosis at any level.

IMPRESSION:

1. Increased moderate degenerative changes including moderate right C2-C3 neural foraminal narrowing.

2. Increased spinal cord myelomalacia at the C3 and C4 levels.

Now that I’m four years out and I’ve made a ton of progress and accomplished a decent amount as a wheelchair user, I’m looking to get into public speaking. What’s the avenue for this? Of course I’d love to get paid for it but I’m willing to start without making anything if that’s what it takes to get there. Any insight/advice is appreciated.

again T2 para incomplete here. I’ve been a para since 2021 and I’ve posted my story here quite a bit. Well it just keeps getting worse as my wife of 13 years has been having an affair the last 2. When confronted about this she informed me that since we have nothing in common and she is young, she needs to move on with her life. Since my injury her support has been non existent as she spent most of her time brow beating me or yelling at me about me dealing with pain/spasticity. I have tried many times to go to counseling with her, but she would tell me I had the issues because I was paralyzed and she wasn’t. She has had a boyfriend for the last 2 years and made up this narrative that all I had was back surgery and I’m a drug addict. We have two young children together who are my world. With my current setbacks from the injury, being with them full time helps me cope with the jnjury. I’m also 40 and been with my wife since I was 20, so even dating I feel will be almost impossible. Anyone dealt with getting left to deal with this horrible injury by themselves. I have so many questions and feeling very lost at the moment.

Osteoporosis has caused three breaks in my left leg starting with a fractured tibial plateau (plate, 5 screws) then nine months later my femur broke at the bottom requiring two screws.

That was about a decade ago then with the SCI I broke my femur at the top this time which required a PHR and that is the hardware shown.

I also tried for the first time an IV medicine for my osteoporosis given I wasn’t going to start that symptom chasing pill machine and I wonder if it is that medication or the fact that I am no longer on the pain meds but I can barely put weight on my left knee and the sensitivity is through the roof.

Also I lost about a centimetre as the hardware sank into my femur.

It’s the hypersensitivity though that is the worst because I feel like I have regressed to relying on the wheelchair more than anything.

Craziness. I hope one day to get a full left leg X-ray.

I’m asking this question for a friend that’s a t12. I’m a t1 and we just have different bowel needs due to our injury levels and what works for me doesn’t work for her. So, I don’t really know how to help. Over the years she has needed to use more and more stool softeners/laxatives. Her current routine consists of taking multiple different kinds of stool softeners, and using the peristeen system. She has to use two full bags of water in order to get emptied. She also puts fleet enema into the water as well as enemeez. She does her bowel program everyday. She has a gastroenterologist and her doctor said if that’s working for her then no need to change it and also gave her a prescription for linzess. But her concern is having to use all these things just to poop. She’s only 37 and at this rate she’ll just have to keep using more and more things to get a bowel movement. I’m pretty sure at this point she is experiencing laxative overuse or if not will in the future.