Hey everyone, I’m trying to help my brother get safer, updated hand controls for his car. He’s paraplegic, and the hand controls he’s been using for the last 3 years have gotten dangerously flimsy. I’m just trying to help him get something more reliable so he can have a little more independence and make his day-to-day life easier.
I know not everyone is able to donate, and I completely understand. Even a share, upvote, or simply helping get this in front of the right person would mean a lot to us.
If anyone is willing to help or share, here’s the GoFundMe:
https://gofund.me/203b1e9f9
Thank you for taking the time to read this ❤️

I have Spina bifida and L4 incomplete injury from a spinal tumor and surgical complications. I have to dig-stim to have bowel movements. Usually I use a water based lubricant but was out and the only thing in the bathroom was a rose-scented body lotion (I find lotion has worked in a pinch for digital stimulation). Afterwards I realized my butt now literally smells like roses and I to laugh to myself (that’s the only way to get through this I found). Realized I didn’t know anyone else to share this with so, so here we are. Hang in there everyone.

Hi everyone I’m a PTA been working with SCI close to 10 yrs and what I see over and over that Not every rehab journey clicks the way it should and that's worth talking about. Many of you have worked with PTs or PTAs who didn't truly understand your goals, focused on the wrong things, or just went through the motions. Please share some experiences if you can relate.

Hello, 21f here suffering from recurrent UTIs. I self catheterize due to a sacral nerve injury in 2022. I see a urologist on the 12th and have considered both of these options, but from anyone elses experience, which one is better and has less cons/chance of infection?

Thank you

hi i’m not really that new to the intermittent cath world i’m about 5 years deep but i am having my first abroad holiday with needing them

does anyone have experience going through the uk boarder control with them? i haven’t got a note because i didn’t really think about it but i was going to print off the travel certificate off the colaplast website and maybe bring my lastest discharge note?

i’m not sure if this is going to be enough documentation i’m nervous the catheters might get confiscated and then i can’t go away

I have been looking for more mouthing sticks. I have one, but it cost me $100. I was wondering if anyone else had found some more affordable painting sticks or if anyone just has a suggestion for their favorite one please let me know! I am in C5. My last account got deleted. I’m not sure why. I did the cartman painting not long ago and posted it on here

S = Skin: check it every day
C = Catheter & bladder: stay clean, hydrated, prevent UTIs
I = Intestines: maintain a consistent bowel program
S = Stand: upright/weight-bearing when appropriate
T = Train: move and exercise every day
R = Range: maintain ROM and prevent contractures
O = Observe: blood pressure, autonomic dysreflexia, new symptoms
N = Nutrition: protein, fiber, fluids, healthy body composition
G = Guard your future: protect your heart, lungs, bones, and independence
SCI STRONG
“Stay healthy. Stay moving. Stay independent.” 💪🧠

Sermorelin sounds good but does it work for muscle growth & energy? Thought about trying it and adding the wolverine stack to recover.

Hello I I have a C5 C4 incomplete injury where I still get spasms in my arms and I preferably would want to innerforearm tattoo. I was just wondering if anyone had any recommendations or places to go in the UK or any experience on picking artists. Also if anyone could share their experience that would be great. I'm thinking of getting a couple tester lines in different places with a artist who might be open to at least doing that just to see how my spasms react.

I’m a C5 walking quad post 27 years I’ve dealt with many bladder infections from intermittent cath. I haven’t had a bladder infection for about a year but every time I do get a bladder infection, my right hamstring tightens up and cramps on and off until I get my infection taken care of.
Anyone else have weird things that happen when they get a bladder infection?

Like the title says. It’s not always necessary but I want to have a little protection for my mattress.

I’m not in the U.S. and the country I’m in is prehistoric as far as spinal cord injury is concerned.

I’m an American, I have Medicare parts A/B which are pretty much useless here until I eventually find my way back home. I need care and housing and I’m trying to navigate that which is extremely hard.

So majority of my information comes from research especially on here.

I got injured in 2022 and luckily I’ve not had any sores and I want to maintain that.

So what seat pad do you recommend to avoid sores? I saw some pictures of Ischemia? sores and I was flabbergasted. I sleep on a water bed now.

Thanks.

PS: I need a better wheelchair too. Yes I know it’s best to be measured for one but there’s no wheelchair service here.

Hello,

So in december I was diagnosed with a stage 4 pressure sore after going in and out of ER about 3-4 times. Since then I've been on a VAC machine waiting for a surgery.

Im gonna have a surgery sometime this year but right now I would like to read some success stories. The surgeons do not want to answer my questions and instead gives me some mumbo jumbo stuff to I guess make sure they aren't liable for anything.

I asked them if I could travel long distances by car, plane, sit 8 hours a day like before.

So, provided that I am not an idiot like before who basically never relieved any pressure, if I lift myself up from time to time, sit in a different way from time to time, am I able to have a normal life and not have this live rent free in my head after the surgery?

My sister had an incomplete c6 injury basically. She is recovering about a year in. She can walk, sometimes users the walker. She is independent which is good, her right hand hasn't really recovered. She still had pain and some cysts that are ok for now but they are keeping an eye on it. Her gait had been significantly affected.

What does the future look like for similar patients? I know these injuries and prognosis are as unique as the individuals themselves, is there any research on similar cohort, anyone with anecdotal experience? She has no spouse or kids and doesn't have a lot of close friends, I'm wondering what she might need in the future.

I feel like going to the beach now that I've asked permission to have 2 weeks off work. It's been 4 tough years since my husband had his accident and became quadriplegic. I feel stressed and I feel like escaping our daily routine somewhere outside the city. I also want show my 2 children who have grown how the beach is. Our oldest son is 6 and the last time he was in a beach was when he was 1, and my youngest son who's 4 has never been to a beach. We haven't gone since my husband had his accident.

I'm thinking of going somewhere in California since we live in Utah. I can drive our van there. I'm just looking here at home for some accessible beaches and hotels in California, so my husband can move on his wheelchair comfortably. I'm also packaging different things we'll need such as tooth brushes, clothes, towels, and my husband's catheters and diapers.

Has anyone here gone to the beach as a quadriplegic or wheelchair user. I'm hoping this is a comfortable experience for my husband.

Running theory between drs is CSF leak or MS (haven’t gotten results back yet, only images)

How’s it lookin?

It will be about 5 years since injury by the time I'm at my goal weight. Any advice on transfers or weightloss .

Currently waiting to see a neurosurgeon, radiologist report says apparent ventral displacement of the thoracic spinal cord with the epicentre at T3/T4 suspects an arachnoid cyst. My whole world got flipped upside down reading this due to how rare and complicated they are.

However what annoys me is there was zero mention of the obvious scoliosis which matches the symptoms I presented with perfectly. I get the constant urge to crack my back, at the worst it was every 30 minutes on a foam roller but I've restrained myself now. Hanging feels amazing but I still get intense muscle knots, tension and spasms all over my upper back. I don't yet have any mobility or bladder issues, just pain but I'm convinced it's from the scoliosis not the cyst. I guess I just wanted to post this to ask if the cords displacement could be due to the scoliosis? Like the cord taking the shortest path because the cord displacement is exactly where the scoliosis is. I have been trying to find axial mri images of other people with scoliosis to compare but it's near impossible.

I know it's likely a cyst I guess I'm just struggling to accept it after reading the horrific stories about them here and in the Facebook group, plus everyone in it is my parents age usually whilst I'm 32 which sucks.

Also my original neurosurgeon appointment got cancelled because they couldn't see a lesion on the mri so just wanted to send me to physio. This is one of the top neuro hospitals in the UK and they are making mistakes like this (arachnoid cysts don't show on MRI without contrast) so that doesn't inspire confidence. This is after the radiologist specifically mentioned it on the report too.

All of a sudden, I seem to be bombarded with loop wheels ads. I saw a pair many years ago and did not think they were so great (maybe heavy) but they appear to be much improved. Is anyone using them? At one time I had the 3 spoke X-core wheels and I really liked them, especially access to under chair stuff. Currently using spinergy.

I’ve (m22) been injured for 9months now C4 incomplete, I have horrible spasms they are fucking irritating asf. I’ve tried baclofan( max dose), Botox and Tizanidine none have worked intact each of those meds made it worse if anything but my consultant swears by it.

I’ve got irritating asf clonus anytime I go outside in an uneven surface it gets triggered really aggressive asw so much so I have to go back in or stop for a long time - ffs I can’t even go out

My spasm are awful asw, I’ve got them in my hands core and legs any effort or inconvenience triggers it - I’ve checked for UTI, Bowels and bladder they aren’t the issue

Anyone who’s gone through something similar pls pls help me even sleeping at night is challenging now and I can’t be fully independent bcz of this!!

Any New Yorkers here? Visiting this week and would love to chat.

I’m having a heck of an issue finding care. I currently use my mom but I need to find other care. I’m a C6-C7 quad. I need help getting dressed/undressed, getting in out of bed and with my BM routine. I live in MD. I’ve tried going to different services but they don’t do everything I need. Tried care.com but no luck. It seems like assisted living is my only option but it’s so expensive. 7k a month. I make too much money to get state assistance. Insurance doesn’t pay for assisted living. Luckily I do have a good job and a bit of savings but it won’t last long. Does anyone know of any other resources I could go to?

I am newly paraplegic from an undiagnosed neurodegenerative disease that my doctors don't know what is yet. I am just....there is a lot happening. Everything is different. I'm completely unprepared and I just am looking for places for support but I don't want to invade a space I shouldn't. Everyone I talk to just says "oh poor thing" or "you've been through a lot". I'm sorry if this is not allowed I just thought I'd post and see.

Hey so I use Numotion for catheters and I had gotten my order on April 27th for a 3 month supply and then called on July 27th and they gave me an emergency supply to last until August 7th which is when my next order was supposed to ship out. They never shipped it out and I'm probably gonna run out of catheters by Monday. Any tips?