r/TBI

i write things down n my phone, but is here another way to remember things?

Hi everyone. I’m new here and I wanted to introduce myself. I’ve had a Traumatic Brain Injury since I was very young, and I’m trying to connect with other people who understand what it’s like. I struggle with feeling overwhelmed, memory, and focus problems, emotional stress, and processing too much information at once. Sometimes it’s hard for me to explain myself clearly, and that can make me feel alone or misunderstood. I’m hoping to find support, encouragement, and people who relate to these experiences. Thank you for welcoming me here. 💚

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I'm 48, divorced, and basically live in a MIL cottage on her property. Nothing weird about that. While disabled, I can still fetch mail and takeout trash. And build the rose garden, tend to the orchard, mow, pay utilities, and pay property tax. Monetary compensation has never been an issue. I don't pay enough, so I sneak money in to pay bills. This is the part I'm struggling with.

Due to medical attention shared with Michael J Fox, it's getting bad. Resentment on me taking over responsibilities are likely the most significant break on our relationship. She commands her ex husband, my godfather, to do chores I am very equipped to do. She cleans kitchen supplies when I beg her not to. And without a cane or a walker.

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The TLDR: I don't want to kill my mom. Full stop. She has agency, yes, but it's gone so far down in the last four years I'm struggling for what to do.

It's not about me. But yeah, I've read about end of life signals. And it's basically all of them, fall risks while refusing an arm and a cane and a pride I don't recognize. Heh, I guess that runs on the family. But she saw my own health downfalls for a decade. I can't understand why she can't believe me when I warn her she is gonna fall. But I don't have interior cameras.

I am the one with the cerebellum TBI. And I can't fathom what is going on. And for the love of God I don't want to make it worse.

What should I, and should not do?

I’m looking for some advice or insight from anyone who has dealt with a similar VA/TBI claim situation.

I separated from service in 2020 and filed my Intent to File that same year. My VSO submitted a claim for TBI after I was diagnosed through a C&P exam and the VA acknowledged it as service connected. Before that, my symptoms had mostly been brushed off as migraines. The original claim was denied because they said there was no treatment record or nexus.

Fast forward to now: last year my supplemental claim was denied, so I filed for a Higher-Level Review (HLR). The HLR reviewer immediately found a duty-to-assist error. We had an informal conference call, and she pointed out that my records clearly contained a diagnosis, nexus, and supporting documentation. She also noted that the VA failed to provide the proper initial C&P exam, which likely would have resolved this years ago.

The claim then got sent back for further development and turned into a new supplemental claim. I was scheduled for another C&P exam, but the VA’s instructions to the examiner specifically stated that the purpose was only to evaluate the residuals/impact of the already-established TBI diagnosis — not to determine whether I had a TBI in the first place.

Because I don’t fully trust the process at this point, I submitted a FOIA request for the exam results. The examiner ended up giving a medical opinion saying I do NOT have a TBI, despite the existing diagnosis already being in my records. They also failed to check boxes related to residuals. Needless to say, I was furious.

I contacted the HLR reviewer again and explained what happened. She told me this kind of thing unfortunately happens more often than people realize. She looked at my file and saw that another exam request had already been scheduled through ACE review. Since then, four more C&P-related documents have been uploaded to my claim.

The HLR reviewer also told me that if the claim is granted, I should be entitled to back pay dating back to my 2020 Intent to File. My biggest concern is that someone is going to intentionally or carelessly derail this claim to avoid that payout.

I know nothing is guaranteed, but has anyone gone through something similar with TBI claims, bad C&P exams, or HLR corrections? Did the VA eventually correct it? Any advice or experiences would really help.

i feel like no one understands this is permanent. i could go into this so much but how do you explain to family and friends?

it feels like no one can wrap their mind around the concept. and it gets isolating and exhausting to try to keep explaining the deficits don’t go away with being in pt or speech etc for the rest of your life. i’m not going to heal by just working harder. my baseline isn’t going to come back.

It's been nine years since the beating that left me homeless with a TBI .

Navigating the systems that are designed to get people off the streets is impossible when you don't even know if your going to even eat for sometimes days at a time. Even staying in a shelter. I lose track of time and miss the feedings.

At one point I just gave up and got a tent and hit the woods. I managed to stay alive for the last five years living in the woods all by myself. I didn't want anyone else around me because of the drama people bring. Not to mention the drugs and alcohol. That's just not my thing. I don't judge anyone for that because God knows any escape from this life, even for a minute would probably feel like a utopia.

I escape the misery by writing. I had to teach myself all over while living under a bridge. But now I can say with confidence that I'm a damn good writer. But getting my material in front of anyone that can help us just another insurmountable obstacle at the moment.

Anyway. That's all. Thanks to everyone in this forum. Sometimes just knowing you're not alone can make a world of difference.

Hahaha. I just missed the bus that would take me to the soup kitchen that serves breakfast. Hopefully I'll figure something out. Sometimes I'll just stand at the bus stop and watch the bus I need to be on pull away. I'm hanging on but my thread is getting a bit worn out.

Ciao a tutti,
la mia compagna è al giorno 47 e non è ancora vigile 😔. Apre gli occhi, muove un braccio a causa della spasticità e si guarda un po’ intorno, ma non segue alcun comando. Ho notato anche che muove la testa in modo strano: la scuote continuamente verso sinistra. Non so se sia dovuto alla spasticità oppure al fatto che ha la clavicola sinistra con un osso scomposto e quindi possa sentire dolore, portando la testa da quella parte per questo motivo.

Non sembrerebbe più in coma, ma non ha ancora una vera coscienza. Si trova in un centro di riabilitazione e oggi, per la prima volta, l’hanno portata in palestra con la sedia a rotelle.

I have read a few posts already about tips for travelling, ao I wanted to share my plan and see if anyone has any other input that may help.

so in August I am traveling internationally with my MIL who had a TBI a few years ago and still struggles with. we are travelling with my two young kids to see MIL’s aging mother and so she can meet her great grand kids.

her most noticeable symptoms are easily overstimulated, fatigues quickly, struggles to make decisions, and possibly balance issues… but she’s always been pretty anxious, easily distracted (**too** social, lol) and a bit wobbly. she seems to under eat as well… history Of eating disorder no idea if it’s related to TBI.

here is my plan to make this trip go smoothly for everyone, ease let me know if you think it’s appropriate or anything I might change/improve

1. try to get her a wheelchair at the airport.
2. set stricter boundaries for her and my oldest kid (4). for example, no sleeping together. these two are very close and they like sleeping together but grandma needs her rest.
3. Print out an itinerary for my MIL so she knows where we are staying, routes to get there, etc
4. make sure MIL gets time to unwind (I have booked her separate rooms, which should help)

biggest struggles I see are

1. walking with her and her horrible attention. I have seen her fall by just walking into a park bench…

2. Adapting to the daily itinerary… we Are traveling to europe so we are going to do some sightseeing. I think that will have to be balanced with some really chill days at the park or whatever… but that’s how I like to travel anyway.

any other travel advice that might help?

At 46 I was VP level at work until I got rear ended while I was stopped at a red light (she was going 50 mph when she hit me). My car was crushed better her car and a truck in front of me. It’s been 2 1/2 years and now I can’t remember the procedure manual that I helped create even after I’ve been re-trained so many times that I can’t count. It takes me 80 hours to do the job that I used to do in 40 and I don’t do it any where near as well. I was misdiagnosed until a month ago with narcolepsy because I deal with insomnia and I could sleep 20 hours a day some days. Because the hospital and doctors told me that I was fine other than getting narcolepsy I didn’t file workers comp and now it’s too late. I’ve had to go on leave of absence twice and I’m so far in debt now from trying to get my brain back that I had to move from a $500,000 house into a travel trailer. I have time blindness, can’t remember anything that I just heard because I can’t comprehend it and I keep getting disciplined at work. I’ve tried sodium oxybates that left me drunk and I think fried my brain even worse. I use notebooks and I try my hardest but my brain just can’t keep up. I can’t lose my job because there’s no way I could learn a new one and I have to have insurance. The driver that hit me had State minimum insurance which barely covered the chiropractor and physical therapy for my back and neck which still kill me all day long. I have constant headaches where my head feels like my ears need to pop, when I read things it doesn’t translate like I’m reading a different language. What meds help you sleep and what helps you wake up? What meds help you get your brain going again? I use a cpap now and still have sleep studies showing that I get zero restorative sleep. I’m trying Aimovig for my head but it’s not working. I have constant body pain. I tried Wellbutrin and Duloxetine but that didn’t work out. Xywav, Xyrem and Lumryz left me feeling like I can’t remember the year of my life that I was taking them. I finally got in with a reputable neurologist and he diagnosed me with TBI but now it’s too late and I can’t do anything legally to have the money I need to get treatment and I have to work or I’ll lose my insurance but I’m literally a zombie at work that can’t remember how to do things that a new hire can do. I just want the pain to stop, my body to stop this hibernation mode where I’ve gained 50 pounds from switching to a much healthier lifestyle and I want my brain to get restorative sleep at night and function during the day. The dr scheduled me to try Botox next month. What has helped you get your life back because this is killing me. Thanks

Ever since I hit my head I feel like I’m not capable of feeling anymore.
Not the way I used to.

I used to feel it as a scale. Content to ecstatic, sad to depressed, irritated to livid with a LOT of space in between to experience all of different kinds of emotions. From content, to happy, to joyous, to excited, etc.

Now I feel like I only feel the extremes. I’m either neutral or depressed, neutral or livid, neutral or exhausted. Almost never happy. Neutral is my new “happy” because nothing bad is happening so I must be in a good mood.

Even right now when I can tell this is something that should bother me I just sort of feel like I’m experiencing irritation through the lense of someone that’s pretending to know what irritation is. I’m neutral or I cry. That’s really my only two emotions now. Neutral or crying,

I wish I could feel happy the way I used to. I’m neutral or I’m laughing, really. And laughing is so temporary. It’s hard for me to express my emotions too. I can tell I’m supposed to feel something and I’m kind of feeling it but I have to try and put up a little act for people. Is this just me?

I grew up with my mom having a TBI. She got it from a car accident when I was 13 and it deeply affected all of us. I was homeschooled growing up and she (somehow) homeschooled me after coming back from the hospital when I was about to start 8th grade. I was practically her part-time caretaker for half the day before my dad came home from work throughout my teens.

I don't like talking about it to others because... like, how the hell do you even explain that to someone without being longwinded? I've been through therapy 3 times and I still have no idea how to do that. I didn't really deal with that trauma until I started going to college and realizing that I never addressed it. I developed driving anxiety around that time and I realized a huge part is because of my mom's accident. I never realized until I started therapy the first time almost 6 years ago that I've been grieving for someone who was still alive. Yes, my mom is still here, but a part of her died in that car.

And the worst part is that I barely remember what my mom was like before the TBI. I'm 27 now and it's going to be 14 years since her accident on June 21st. I remember bits and parts, like my mom's love for music and how she used to sing, but I can't remember what her voice used to be before the accident. She never got her range back. She never really adapted to that loss, she just trying to mimic it like back in the day and failed every time. Her vocabulary has always been a mess since the accident and I think both that and her memory have gotten worse over the years.

The years haven't really been kind to her. She had a couple of falls during COVID and started to isolate herself in her room more, only coming out for food. Around late 2022, she fell and broke her femur. Of course I found her and of course she went to the same hospital she was in after her car accident. She never really regained her ability to walk. Yeah, she had physical therapy, but she didn't really have the proper support she needed from the nursing home that she was in rehab for. She can walk a little bit, but her stamina is terrible and she's dealing with arthritis in one of her knees.

So now, she's mostly in her bed, watching TV, eating junk food that my dad buys for her, and gets her diaper changed by the home health aide that barely does shit and has to be woken up to do anything. I fucking hate this. It's pathetic, I'm 27 and yet I feel like that same trapped 13 year old kid. I can't remember very well what my mom was like before the accident and I can't stand watching my parents deteriorate like this.

I think the worst part of this is knowing that I can't talk to my mom about certain things because I can never tell how much she's actually understanding because of the TBI. It's like I'm being unintentionally gaslit by my own mom. I know she can't control it, but I hate not being able to talk to her about things. Communication is a damn nightmare half the time and all I want is my mom back.

It fucking exhausting and it hurts. It feels like I can barely talk to anyone about it outside of family (and even that gets exhausting really fast).

Generally speaking, if symptoms of a concussion still exist three months later, they are generally considered permanent. Optimistic doctors might say they can improve, but almost no doctor would say they can be fully cured and return to baseline. Because PCS itself means it is not a transient dysfunction, but rather structural damage exists. Precisely because scientists have discovered that the pathology of PCS is structural damage that cannot be seen on MRI, concussions are referred to as mild traumatic brain injury (mTBI) – “mild” implies microscopic.

You might see many concussion recovery channels on YouTube claiming that any concussion can be fully healed. I have to be honest: those channels are often trying to sell expensive courses. They aren't necessarily lying, because the definition of concussion is “after a blow to the head.” That blow can injure the neck or the vestibular system, and that is still a concussion. Those who claim concussion is treatable are usually treating the vestibular system or the neck, or teaching mindfulness to relieve anxiety. They have never actually addressed the real concussion itself – i.e., mild traumatic brain injury.

Once we understand the mechanism of structural damage, why does it lead to permanent inattention and fatigue?

The brain has a network called the Default Mode Network (DMN). It is responsible for thinking when we are not actively focusing attention. When you enter this mode, you might just be spacing out, not deliberately thinking, yet you still absorb all incoming information. In this state, your brain acts like a magnet, automatically drawn to the information – for example, when you read a newspaper, watch TV, a movie, or an animation. Almost all human cognitive activities rely on this mode. If you space out completely without any deliberate interference, you can even enter a state called “flow” – a state where the brain runs at extremely low energy consumption yet performs at peak efficiency.

What we commonly call “paying attention” essentially uses the DMN as well. However, this mode places extremely high demands on brain hardware. Anything like fatigue, insomnia, fever, or a cold can impair DMN performance.

The most terrifying thing about a concussion is that the key structures of the DMN – the corpus callosum and the cingulum – due to the shape of the brain, are most vulnerable to concussion. Shearing forces concentrate there. If that shearing force does not exceed the threshold, you experience only a performance drop due to an energy deficit – it feels like having a cold, not like losing something. But if you truly lose this ability, it means the damage has exceeded the threshold. The axons that participate in the DMN have already died. They may or may not be visible on MRI. Because the DMN has extremely high requirements for brain integrity, even damage that is invisible on MRI can impair it.

This damage is lifelong. You do not have “inattention” in the usual sense. Rather, the DMN you used to rely on is gone. You can no longer absorb information efficiently while spacing out; you just space out. You then mistakenly think you are distracted, so you force yourself to concentrate, using your prefrontal cortex to perform cognitive tasks. But this state cannot be sustained for long (and that is not your fault – no one can). So you feel that you cannot concentrate, and you try to extend this prefrontal cognitive effort. This actually forces the brain to run at an inefficient, high-energy mode, not the restorative, low-energy mode. Consequently, you cannot engage in long cognitive tasks and then feel refreshed as if after a nap; instead, you feel extreme fatigue, drowsiness, because your brain energy is depleted and you need sleep to recharge.

Much of our cognition happens under the DMN – for instance, experiencing nature. When you are bored, you space out, and in that spaced-out state you feel the environment around you. If the DMN is damaged, unless you deliberately look and observe carefully, you will not generate any effective information, even if you are in your favorite environment. Moreover, the experience of the executive network (manual focused attention) is different from the DMN. That is why after a concussion, your perception, sensation, feeling, and experience change.

It is like driving a long-distance car. The car has both autopilot and manual driving modes. Normally, you spend most of your time in autopilot, switching to manual only for special tasks. But if autopilot fails, you either drive manually the whole way and become extremely fatigued, or the car stops moving altogether. And you will feel that this is no longer the same driving experience – a part of you (the autopilot) is gone.

I know many people are most concerned about treatment. I am sorry to say that brain cells cannot regenerate. Any structural damage, from mild to severe, is permanent. If you had any chance of full recovery, it would not have become persistent post-concussion syndrome. That means you already have a permanent structural deficit, and that deficit has caused the DMN to disappear forever.

What you can do is use cognitive strategies. For example, notebooks, voice recordings, etc., to replace that autopilot. Then use those notes or recordings to find the information you need for work.

Alternatively, you can maximize the duration of manual driving through exercise, medication, and effective rest. This approach is called brain compensation – using other brain regions to take over the lost function. Over time, with compensation, your manual driving ability can become stronger, from getting tired after 20 minutes to lasting two hours.

Using both methods together can help you return to society and find a job. Doctors only address your ability to return to society. If you are already working, then you are considered a completely normal person, and your family and friends may think so too. Thus, this injury is invisible. It shows up in your personal abilities and quality of life. But you must be clear: you indeed have a brain injury. Do not think you are not trying hard enough just because others see no difference between you and a normal person

At the store with my wife, I grab butter and put it in the cart because i'm sure we're out. She says we have butter at home, I reassure her we're out. She says "You don't remember but you already bought butter, we have plenty" I get upset, I think she's gaslighting me again. She doesn't argue about it and we buy the butter.

I go to put away the butter when we get home. We have 56 sticks of butter, I don't even use butter that often, I'dd be really surprised if we use 1/2 stick a week. Butter doesn't even last that long.

I'm going to forget this and buy butter next time. I fucking hate this, nothing is real, i can't trust anything, not sure if everyone is lying to me, if they aren't they could start and i'd never know.

And there's a storm coming and inside of my head feels like it wants to be on the outside and i'll probably spend all day in bed, at best on the couch.

I used to be strong

I used to be strong, i used to love the outdoors

Honestly I like the trees more than the people

But both were important and both have their place in my life.

One day that changed.

I lost the ability to walk.

Now not only can I not drive but I can't even get in a car.

I used to love talking to my friends and browsing bookstores for hours

But no more not ever again.

Never again will I walk in the woods or swim in the ocean or hike over hills.

Seldom do I meet new people and my social circle shrinks by the day.

Never again will I know the love of a romantic partner.

Disability is isolating.

Disability is lonely.

“I Used to Be Strong”

I used to be strong.

I used to love the outdoors.

Honestly, I liked the trees more than the people—

but both mattered.

Both had their place in my life.

One day, that changed.

I lost the ability to walk.

Now not only can I not drive,

but I can’t even get in a car.

I used to love visiting my friends,

and browsing bookstores for hours.

But no more.

Not ever again.

Never again will I walk in the woods,

or swim in the ocean,

or hike over hills.

Seldom do I meet new people,

and my social circle shrinks by the day.

Never again will I know

the love of a romantic partner.

Disability is isolating.

Disability is lonely.

Recently over the past week I’ve been really struggling with delusions as a result of my recent psychosis diagnosis, but especially over the past 3 days I’ve noticed near constant headaches, on and off dizziness, pressure in my head, etc. But now it feels as though my emotions are almost entirely flat, slower speech, and I’m having anxiety due to me thinking I can’t recognize people in my life. (Still not sure if this one is just my psychosis acting up) Overall I’m just really confused and feel so helpless, anyone have any advice?

Who else wears sunglasses inside? They were talking about doing that in my brain Injury support group the other day so I got the courage to do it. I’m sure ppl wonder why I’m wearing shades in church & the gym today but not their business I guess.

Background: My mother had a TBI about 15 years ago. I've been overseeing things since. While she was in her coma, my little brother turned whatever age made it so he couldn't be in my mother's household anymore and her household size dropped to 1. She then made $29/month too much to qualify for MA. This forced her to pay $450/month for Minnesota care (would be mnsure now) and they didn't cover 3 of the meds, for another $700 out of pocket and she would've been unable to even cover that, let alone literally anything else. I got her set up with supported employment to qualify her for MAEPD. There have been struggles, but it's worked.

Situation: my mother is clearly declining--her memory is getting worse, the automatic fake memories are getting to be a serious issue, she has become combative and incapable of restraining herself. She's almost certainly going to lose her supported employment whenever we have this meeting soon (she cannot return to work till we do and they've made it pretty clear they're over dealing with her). There is no other supported employment in her area. She is incapable of holding down a real job (obviously). If she does not earn $65/month from something that constitutes a "job" (but not too much more or she'll lose SSD and her apartment) she will lose her MAEPD and my right hand to God, she will die. She's on like 20 meds, at least 2 of them are patent law protected (meaning private insurance won't cover them and she'll have to pay hundreds of dollars out of pocket for them) and she's like not doing well physically either. I am not being extra. This is literally life it death for her. Nevermind the spend down--if it was $450/month in 2010, I can't imagine how heinously expensive it would be now, but I'd bet she ends up homeless and unable to pay bills/eat. I am in too rough of a place to do much physically--she needs her doctors in the metro and I cannot afford to live there. I have a profoundly disabled child and 3 others and a brand new grand baby and my sewage line broke and I just am at capacity honestly. Importantly, she is on a CADI waiver but her worker is absolutely worthless. I have filed complaints and asked for a new one but *I* have to find a new one and have been trying for weeks and not a single one has even so much as called me back--and they have ZERO info about her. Like this must be typical.

Questions:

Are there programs (Minnesota) I may not have heard of? She's certified disabled by SSA and on a CADI waiver. She has an IHS worker. I've been trying for almost a year to get her an ARMHS worker and PCA, but as I mentioned, the CADI worker's favorite thing to do is not do her job.

Are there new and different options for health insurance? Something besides MA, Mnsure, and private insurance.

Is there an advocacy agency or something I could call? I tried the mental health ombudsman and they said it's not mental health (lol ok).

Does anyone know anything outside of MAEPD that can provide health insurance for someone who makes a tiny bit more than cap?

Can anyone tell me anything about services and/or the processes involved for getting her into a higher level of care if that's what's needed?

Please help me. TIA

Hi all I’m very upset this morning. Decides hm maybe I shouldn’t use the air pumpy thing on my neck because it’s hurt the last several times so okay I’ll do the inversion board right now, feels like I could use it. Anyway I had to stop in the middle of being upside down and helping my neck to puke. I’ve never been squeamish about puke so I just got right back on because wow my neck needed it.

My family is angry at me for not being better. Legal is angry at me for not being better. I’ve lost my boyfriend, had to break up with the wonderful person I just started seeing because it’s just not worth wall staring for like 2-3 days after a 4 hour date. Physical therapy gets angry when I try to do too much to make everyone less upset at me because I’m supposed to rest but NOBODY
WANTS ME TO REST because I’ve been off work for a year and a half haven’t I rested enough? And I can’t blame them! I want my me back.

When i was 7 i fell from an ATV Bike on the road with high speed without a helmet i was unconscious for about 30 minutes and don't remember if i went to the hospital or not but I remember that my parents said it is nothing and continued my life and all these years later I'm wondering if it effected me or still effect me I need advice.