r/TBI

My dad (40) around 25-27 days ago was hapilly talking to my mom and minutes later, while riding in his truck, he was passing a traintrack, no signalization no barriers. The train was going around 140km/h from what I've heard.

He was basically dead but got stabilized quickly and went on a helicopter. He got into probably the best hospital he could be. He had an hemorrage but in 2 to 2 and a half hours he got out of surgery well. He got stabilized quickly. The next hours where fucking scary but he pushed through it.

He got polytrauma, it was very very bad. His brain stem (i think that's what it's called) seems to be good, I don't remember correctly my memory is really bad. Both his pupils react to light and he reacts to pain and all that primitive reactions. A few days ago, he was still in intensive care, he seemed to be pushing out saliva and his arms where going inward when he did. Next day he seemed more... normal... but we tought that he needed the drain again. We tought all his hard progress went to shit. It didn't.

There where no complications, yes there where seizures but not really notable, the only thing is he has an infection on his lungs that he had before, so now he has a hole on his throat to breathe, he breathes on his own btw.

The only thing is... there was no progress so far. Nothing backwords is great but nothing forwards either. It hasn't even been a month and I know he is in a really bad state but I want to believe in him. I want to believe that he will be strong and he will fight. I visit him and talk to him, move his hands a lil, touch his face to see reactions, I open his eye just to check if it follows. I'm so scared. I believe in him but this is really bad.

Anyone who can give me more hope? Tips? Anything please

You know. Honestly thinking, I’m not extremely happy with my life right now. I try to forget the past, but I just can’t. My life was really good and going to be really really great.

I could use people to chat with who understand this isn’t easy. I doubt myself all the time, still!!

Aug 2006 car accident/severe TBI

Oct 2013 Epilepsy - clusters

July 2018 Brain surgery- R temporal lobectomy

Im starting yet another new job on Monday (tomorrow). I’m feeling pretty good about it, but still nervous! My significant other has little to no emotional intelligence, and it’s impossible to share my feelings. I look fine, so why would anything matter? Is that really how people see the world? I could just use some encouraging words from people who understand. Emotions and memory are held in your temporal lobe.

Three years ago, I was strangled in an abusive relationship. I was gasping for air before he let go. At one point I blinked and saw black before I opened my eyes again and tried to claw him off me, although at the time, I did not consider that as passing out because it was such a short amount of time.

Since then I've dealt with pots-like symptoms, and beyond that, general dizziness, memory issues, cognition issues, brain fog, executive dysfunction etc. I now have light sensitivity with my eyes that was not there before. I struggled a lot more in college than i did before he strangled me. I've always had migraines since I was a kid, and they occurred more often now. I had a lot of mood swings the year after it happened that were not typical of me.

Besides this, I am hyper-mobile and have multiple autoimmune issues, so I've already had quite a few doctors visits for that.

I didn't go to the hospital at the time because of shame, but now I realize just how dangerous strangulation is and I want to get checked out by a neurologist. What is the process like? What is an MRI like?

I once again got so bad - not able to recover from a cold/sickness that lasted 3 weeks, and was put on a 5 day methyl prednisolone rx. From what I understand this drug mainly reduces inflammation especially in the brain. I feel absolutely incredible on this drug, like I can actually function and live a decent life. My eyes don’t really bother me, my brain fog goes away, my neck even feels improved, I have energy, and could work full time if I always felt that good.

However I’m a few days off it and back to feeling terrible and hopeless. 6+ years out from my tbi.

It leaves me wondering, if the drastic reduction of inflammation is why I feel so much better on it, why do I STILL have such a high base line of inflammation? I eat healthy, a low inflammatory diet, I do all the right things, but constantly feel like shit. It’s so demoralizing.

I was in an intense car crash when I was 17 and was in rehab and recovery for a couple years. Early days looked like life support and intubation. I spent give or take 6 months in inpatient rehab at Magee in Philadelphia, outpatient at Harborview in Seattle, and went to college 1.3 years after the accident and am just now graduating with my bachelors degree 6 years later at a different university. I am doing so exceptionally well it feels unfair. I am so lucky and have a great life. I just want people to know that great things are possible.

I noticed that I’m impatient with everything- I don’t even enjoy spending time on my hobbies anymore because it feels like it takes too long.

I’m going back to college soon and worried about not being able to study well or I will give up too easily because I feel overwhelmed or impatient with the coursework.

What am I experiencing here?

Hi everyone

I had a stroke back in June 18(brain hemorrhage) (2 bleeds) that left my left side paralyzed (there is some movement now Yayyy!!)

The biggest issue I am facing is the uncertainty of it all, somedays are good and sometimes I feel alien in my own body. Love to know you all's good experience

first of it’s so refreshing to see so many TBI survivors who started podcasts. i love that!!

so our podcasts is about the lived experiences of people with TBI’s. I’m Jesse and me and my friend Ken host a podcast where we talk to all different people who are in our often hidden TBI community. we like to keep it real, often informative, and of course funny. Because sometimes you just have to say F*** it, i have a brain injury.

I wasn't planning on making a post, but I feel like I want to say to the ppl who aren't doing good that I feel you. I see a lot of posts about different struggles, and every struggle is valid. Regardless of where you are on the recovery journey, whether it's new or old.

The things I read here, are from ppl that have substantially overcome their physical journey. They are working, in relationships, travelling. I don't see posts of anyone who is near the level that I'm at.

I fell off an escooter (going slowly up the sidewalk ramp from the road, no helmet) and had brain surgery (brain bleed/hemorrhage). I had a seizure (I have mild epilepsy) and a stroke. I've ridden those escooters for yrs, I was experienced. I was 35, this was 2023. I spent 3.5 months in the hospital, then went to the brain injury rehab unit for almost 16 months. Had a trach tube. I was non verbal for months. I don't even remember the accident, or the next 2 months. Adult diapers for months. Couldn't move my affected side arm/leg/foot. Could only open my eye halfway on the affected side. Had a feeding tube surgically inserted in my stomach.

Went to the rehab unit. I was wheelchair bound for months. I was diagnosed with pseudobulbar affect, it's random laughing or crying with no emotion behind it. My speech therapist got me to the point of talking again, I have dysarthria. Basically the muscles used to speak aren't working. I learned how to eat/drink again and I got my feeding tube pulled out. I went from blended food, to pureed, to diced, then finally I could chew on my own. I had to learn how to write again, even though I'm right handed and that's not my affected side. I couldn't shower on my own, I was showered by staff. I had to get a catheter inserted a few times a day and in the night, couldn't pee on my own. I don't really know the details of that, but it was like my body didn't know it had to pee. I couldn't lift my affected leg up to do any walking, physio had to be behind me and beside me to lift my foot to take a step. I had to wear a slider on my foot so I could glide it when I couldn't lift it. A slider is what someone wears if they are curling, and it's smooth so it allows your foot to glide smoothly across the ice. Eventually I got rid of that and I made it to a walker, once I could work both of my hands. The pseudobulbar affect (PBA: laughing randomly) made it difficult to do my programs and to be in a social setting with the other patients or to be with staff. The meds they put me on for the PBA made me so constipated. And I was stuck eating the shitty unit food, I gained almost 15lbs there. I was a really healthy person before. Then I got to a point where I could shower on my own. I went from a room with another patient to my own separate room finally. I was able to go to the bathroom on my own. For months I had to go to the bathroom strapped in that chair machine that stands you up. Can't remember the name of it. And after you go to the bathroom you press the call button and they come stand you up and wipe for you. I got an AFO for my foot and I needed regular botox in my leg/calf muscles. The spasticity makes my foot turn inward and the heel doesn't touch the ground. I still get regular botox, I'm on a list to get surgery to lengthen the tendons of some muscles. I got a palate lift retainer to help with my speech and stop the air from exiting my nose when I talk. Then physio started to walk with me and a quad cane. It's a 4 prong cane that keeps you stable. I had to wear a gym glove to hold my cane, cause my hand would get so sweaty. I still currently need a glove if I'm doing cane practice.

My story has so many details. I was so sick of living with other patients/staff. My only goal was to make it back to my condo, living alone again. It's been 3.5yrs. I can only walk maybe 7 steps without my hands on something. I walk crooked and very slowly. I just got to the point where I can lift my affected arm all the way upright. My mom came to live with me for a couple months and then could see I was good on my own. I can now change my own bedsheets, I do my own cooking and can use the oven for baking. I can vacuum, with my cane in one hand. I go to the gym on my own, it's a fitness facility made for ppl with disabilities. I never drove before my injury, I now book rides with the accessibility public transit service. I do my own laundry, shower with my shower bench on my own. I have to constantly speak outloud to myself to keep improving my speech, it's far below sounding normal. I am always giving myself praise and say that I am making progress, even if I don't believe it at the time. I've had a couple falls, it's been quite a while since that happened though. I'm not working, I'm on disability income. I'm 3.5 years celibate now, I don't even know if I'm still a good kisser. I was single when the injury happened. I can't even imagine dating, needing to conversate so much with my shitty speech. I have no sex drive anymore, and I've always been very independent so I'm still happy being single. I have to lay down on my bed to put my hair in a high pony. Doing two braids is already a shldr workout. I remember practicing putting makeup on in the brain injury unit with my rec therapist. I rarely wear makeup now, it's a whole event to put it on, but I learned how to do it well. I was very devoted to exercising in the unit, I needed to live alone and be successful at being alone.

The muscle growth after the TBI/stroke is soooo incredibly slow. 3 yrs to be able to reach all the way up, no weight in my hand. There are ppl who were patients at the same time as me and some still can't use their affected arm. Some are still in wheelchairs. Lots are in assisted living. I stayed very determined to get better. Fortunately, my body & nervous system allowed that to happen. I was a gym rat pre injury, so I spend a lot of time doing exercises. Either on the floor mat in my room, or at the gym.

I just want everyone who is still far beyond leading a normal life after their TBI, to know that I fuckin hear you to my core. I haven't lived a happy life since my injury. I have happy moments with my friends/family, who I absolutely love to death. I am just existing here. I have no choice but to keep going. I have to be the one that went from 'I don't think she'll live alone', to then being the one who says 'well just fucking watch me get to that point'.

YouTube : AHS Scooter accident, to see my interview that I did after I'd been in the brain injury unit for 11 months

So here’s something I struggle with: explaining to people that being able to do something tells you very little – almost nothing, in fact – about what it costs me.

I can attend the appointment. Have the conversation. Follow the instructions. Sometimes I can do all of those things quite well.

And then that’s it. That’s the day.

From the outside, the evidence is that I did it. From inside, there’s considerably more information. You guys get it. What came before? How much did I have left when I started? What did I have to give up afterward? Could I do it tomorrow?

I’ve been thinking about this as the difference between capability and capacity. And to me at least that distinction is useful. 

Capability: I can do the thing.

Capacity: how long, how often, under what conditions, and at what cost.

My half-hour vision rehab appointments use up the rest of my day. The appointment was only thirty minutes. My brain apparently hadn’t agreed to that schedule.

It can feel like an obstacle course where each station looks manageable on its own. I actually see the obstacle course in my mind’s eye. Stairs, a balance beam, instructions to follow, a passage to read and remember. But the balance beam is different after the stairs. Remembering the passage is different after everything that came before it.

And finishing the course doesn’t tell you whether you can make dinner. It tells you nothing.

This is the part I wish more people understood. Including, sometimes, me. I can still catch myself using something I managed yesterday as evidence of what I should be able to do today.

But yesterday’s result was yesterday’s result. It didn’t come with a guarantee.

Any of this familiar? Does the capacity vs. capability distinction make sense? What’s something you’re capable of doing that costs more capacity than anyone sees?

My brother experienced a DAI 3 on September 14 in which is he still hospitalized. He was hit by a car. He is 17 years old and previously healthy. GCS 9-10, spontaneous eye opening but not following commands. He is breathing on his own. He does not have any awareness yet and be described as being in a vegetative state.

For anyone who has experienced this or had a loved one experience this, could you tell me how your recovery went? How long it took you to regain consciousness, follow commands, etc?
Will my brother walk again? Talk? Will he have a meaningful life?

Looking for hope