Lost & Found: What Brain Injury Survivors Want You to Know

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Please remember, we are not able to give medical or legal advice. If you have medical concerns, please consult your doctor. All posted comments are the views and opinions of the poster only.

I'm reading these stories and I can relate. I got a severe TBI October of last year in 2016. I was out one night, had way too much to drink(which I shouldn't of been doing in the first place) and decided to go for a walk on the road because I needed some fresh air (which I don't get because there's a sidewalk along the road) and was hit by a car because it was nighttime. I had multiple other injuries but those have healed or at the end of healing but TBI has been the hardest. I walk with a hemi walker and a little assistance from other people but I'm having difficulty with my left arm. It doesn't move. I had damage on the right hemisphere so my left side is physically effected I do stretch the muscles in physical therapy. I start a program that will work my brain and whatever I can. It includes physical, occupational, and speech therapy. I'm just really hoping and praying that my left arm will be able to move again.
I was in a car crash and suffered a brain haemorrhage last year. I think I got off very lightly although suffer from all the symptoms in this feature. What I wanted to ask: is anyone else suffered a change in their sensory feedback? I used to love music and salivate over yummy food when it was talked about but now although I like both still I seem to have lost a jigsaw piece where I feel a bit removed. It's actually upsetting more than the other stuff as I feel I don't enjoy anything fully with this aspect of the distraction. I would love to hear if anyone else has experienced this and if it improves. X Rebecca
Just found site. Thank you, thank you, thank you! TBI survivor. San Antonio

All i can say is thank you. My daughter suffered a TBI January 8, 2015. Some driver ran s stop sign and hit her broadside. It totally changed her life and my life forever. Some times are extremely difficult dealing with her negativity, grumpiness, argumentivenes, seemingly total personality change. She seems sad all the time and constantly overwhelmed. I want the best for her. She is completing her junior year at Manchester but now uncertain if she wants to continue or do the career she is studying for. I told her it would be best if she completed her degree then do whatever she wants, even if it is not in her chosen educational field. I just want what is best for her. Your article at least helps me with some sound advice on communicating with my daughter. Thank you so much. Would love to read more. God bless.

Great worldwide group Stroke Survivor's closed group with 12k members. We all are in the same boat and yes we need support. If your reading this article you probably had a stroke or know someone that did. We are encouraged to tell are story, to ask questions or just to say we're having a good or bad day. https://www.facebook.com/groups/573759576077398/

I am a registered nurse who suffered a fall in 2007. i suffer from neck injuries and was diagnosed to have traumatic brain injury. like all others suffering from TBI, I have cognitive problems..forgetful, lost of focus and comprehension is too slow, and very sleepy at times and variable moods..short tempered...nothing really change that is noticeable to others..except the fact that I tend to grope for the right word to say and get lost at the middle of a sentence or just suddenly could not remember what I wanted to get or do..repeatly say the same story and sometimes I get so frustrated and lost. All these years I have been trying to join a group of people in my place who suffer from TBI and to be of help too if only to give me a better understanding of the changes in me and to help others cope up psychologically and spiritually to the effects of TBI.

This article is really great. I had a TBI about 3 years ago due to a ladder accident.  My wife has had Fibromyalgia Syndrome (FMS) for over 20 years.  Since the accident, my wife feels that I have changed.  Her FMS has pretty much exhausted any patience she had.  I showed her this article, but the points about being positive and having patience seem to be undoable for her.  I have been patient with her FMS for many years, but I think that it may not be a two-way street.  Since the accident we have gone to two different family therapists, but both pointed to things she was doing that were problematic to the relationship and she got mad and refused to continue.  I hope this is not what the rest of you encounter.  I hope this is not representative of the rest of you.  The points in this article, if they can be followed by family, can help in the recovery process.  I wish  you all a happy / successful recovery.

I wish you and your wife all the best! This can be very hard on a marriage. I had my TBI and neck injury two years ago. My doctors are trying to tell me that the pain I feel is FMS. If that is what your wife suffers from, then my prayers go out to her. But, I also know what TBI is like and how life changing it can be, with no light at the end of the tunnel, so my prayers go out to you. I always thought I would be the care giving in our marriage. Now both me and my husband have out issues. It is very intentional to some day just stay out of each others way and I don't mean that in a bad way but it a way that relieve any stress that can be more damaging to our health. I don't take anything personal and neither does he! We try to do one "little" thing a day to say I love you. Like, he like smoothies so I make him a smoothie. I actually find it take my mind off of my own pain!!! And he does the same for me, just something very small! Don't allow this to ruin your marriage, it's already ruin everything else, right? Loneliness will only make things worse! I pray for you and your wife!

How do you deal with a person who has a TBI and drinks himself into wonikers? Came back from his original injury and proceeded to become the alcoholic he was before. How do you deal with a person who has thrown his life away and yet still desires the very poison that rendered him unable to think past five seconds.

I am grateful for all of this info....I had a TBI from getting hit by a car (3 skull fractures, permanent brain damage). I feel misunderstood daily, frustrated mostly...my memory is shitty and 'm very angry that I get to pay the price of a distracted irresponsible driver while I was walking.

I am not a TBI survivor, I am merely a nurse researching for my Masters.  I have read a few comments about noise being overwhelming, has anyone tried using earplugs?  Just a thought, I wish you all well.

Response to the nurse inquiry about ear plugs. Many use them or noise canceling head phones. It helps some, but not enough. Nothing totally blocks and that is what is needed. Usually the visual stimulation is Also bad so dark quiet rooms are best for me

OMG. You just don't described what I going through.

Sorry Denny. It sounds like you have a lot to deal with. Sending you prayers and hugs.

The contusion of my brain resulted from a head-on automobile accident in 1975. The amnesia improved over the years but I occasionally have trouble with vocabulary recall, especially when tired. Severe double vision has improved somewhat after a total of 6 eye muscle surgeries, I have pretty good functional vision but read only with one eye at a time. The normal visual fusion reflex is gone and with it is stereoscopic, binocular vision. Still I completed a Master of Science degree in 1988 and will retire from a profession as a dietitian in a few years. I couldn't fly a plane but I did ride a motorcycle for years and still ride a bicycle and drive. I'm happily married to a nurse practitioner and I'm doing alright.

Hi
Am 31 and i had my concussion almost a year ago. Somebody hit me on my head i cant recall who it is. I had black out for more than 2 1/5 hr. when i woke up i was totally disoriented. I went to the doctor though they discharged me saying i have to rest after MRI and CT scans but the left part from my breast down is till now slightly numb. No headaches, at list non that i can remember but my eyes were seeing individually for the first week. My right hand and leg was very weak that i could not raise my hand and walking was hard that i have to walk slowly and make small steps else i will fall and my left ear was ringing really hard. I could not speak and make any sound loud. But it has all reduced now slowly, my ear still rings but not like before, i can speak just few words. I limb while walking now and my arm is still week i have to apply force or strength to do things and i my fingers shakes too. I want to know, am i alone on this? how long will it take me and will any of above mentioned symptom be permanent?

How long did yalls last for before y'all healed?

I'm exactly on that. How long did it take you to heal completely? It's hard to not have any electronics. Also, hard to be the oldest and have to go to bed 2 hours earlier than everyone else. 

I can relate to parts of so many stories on here, Denny especially. I was never actually told I have this but I do. Two and a half years ago I was backed into in parking lot and saw it coming. I have had short term memory loss and issues with different brain functions. In May of 2016 I was in two accidents that were twelve days apart. The first one happened as my daughter and I were stopped behind someone. We were struck from behind and pushed into the car in front of us. Twelve days later I was traveling with my husband at 55 mph when someone pulled out in our path. We ended up t-boning him. Along with all of my memory problems, I have difficulty speaking. I lose track of what I'm saying if interrupted, I can't fin words at times either. I suffer with headaches on the daily and neck pain. The neurosurgeon is conservatively trying to help my pain but I fear my memory issues are permanent. Reading everyone else's stories helps. My family doesn't get that these issues are what have changed me so much. I've gotten the comments too about how I look like I'm fine. The pain I deal with daily and accept. The hard part is the brain issues and no one understands what I'm dealing with. Thank you for letting me get my stuff out there. God luck to us all.

This is my last comment. Wife just told me filing for Divorce. Guess idea of being a caretaker not something she wants to take on. I still do everything myself. Just takes longer so not at that point yet. Cant get help cause have no insurance. I hope you all get better and keep up the good fight. CTE means I wont get better but I will continue to fight. Not much else to say. Good luck to you all.  Denny

Hi I have a tbi, from an assault at a bar in April 2008! My frontal lobe on the right side of head is dead, and the entire right side of my head is titanium mesh! I've been on disability for going on 7 yrs. Because they can't seem to get my seizures under control, but I totally agree with Denny about waking up THE MORNINGS HAVE BEEN HELL EVERY MORNING FOR A LONG TIME! !! Between the physical pain, and another thing he said "just trying to face another day like this"! This is also the first time I have reached out to try and talk about my injury! Good luck and God bless to all my surviving brothers and sisters out there! I look forward to meeting other survivors ,and learning as much as I can from others who have been living with this silent disease, Im so sick of hearing from others "you look fine to me!" lol if they could only live a day in my head... being trapped in your own damaged head day in and day out really is hard!

Since my last post things have kinda gone to crap. Was told to go to Emergency room at neuro clinic so I can be referred for treatment. Let this be a lesson to somewhere out there. Learn from this what u will cause i cant advise u on how to proceed........ I printed off email from BIA with instructions of where to go and what to do. I go to ER, fifth floor like told. Could not find correct dept. Someone was nice enough to show me. Get there and they say first floor. They walk me down there. By this time My brain is close to going into safe mode as I call it. I get to that window and they try sending me back from where I just came from. at this point was very upset and couldn't find the words to tell them what i needed. I broke down. Was told to write down my concussion history and my symptoms prior to show doctor. I did. I couldn't speak clearly at this point show just gave the nurse the sheet like I was told. She got to the suicidal part and it was game over for me. In came security guard and was taken to a private room under guard. They took my cell phone before I could get a text off cause no one knew I was there. It was the longest 4 hours of my life. Nurse came in to take blood. Asked her to tell me honestly if I was leaving today. She said she did not know and neurologist and psychiatrist would be coming in to evaluate me. They hooked me up to machines. Put me in a tube then back into room with guard. I looked around for something to hit the guard with so I could run but everything was screwed to the walls. And i didn't know where my truck was so I just tried to stay still while I was flipping out inside. Finally psychiatrist came in and convinced her I was going to kill myself today. They let me go on a PTA at their psychiatry office so I agreed. Gave me a script for 2 weeks of sleeping pills cause hadn't slept in a long time. well here it is 2:37am. This is what happens when I miss one. Too long of a story short; tried to make appointment like they said no appointment without insurance. That means no more sleeping pills, no referral for therapy and a bill with 7 types of tests that I know I cant afford. So if anything I'm worse off. Take from this what u will. 

Denny

To Denny,

I say prayers for you Denny. Please don't give up. I am not a TBI survivor, but my tall,good looking, fun loving 23 year old son was a victim of an assault in July of 2016 and suffered a severe TBI. I think I have an small inkling of your suffering. I see it in my sons eyes,hear it in his voice,in his walk, in his actions,when he's sleeping-which is unpredictable..He tries to be brave,I know he still has headaches..I get them too...sympathy pain.. the surgery scars, the waiting for justice for the assailant, the trying to work, the trying to be 23 again,the loss of friends...that don't get it, tired of going to therapists and doctors, tired of being tired.

You had a big impact on me when I read your post several times over the last few days. Think about going back to your chair again and you just might make a difference to one more person. Hence..here is the Starfish Story...

One night, on a sandy beach, a terrible storm started. It rained. The wind blew so hard that it shook the houses along the beach. The next morning was foggy and gloomy. Many starfish had washed up on the beach. A man named Buck walked out on the beach to look around. Peering into the mist he saw a young man walking along the beach. He was tall and slender. Buck saw him throwing starfish back into the ocean. Buck walked up to him and said, "Why are you throwing those starfish back into the ocean? They'll just wash back up on the beach again. It doesn't matter." Without a word the young man bent over, picked up a starfish, and threw it with all his might. It went way out in the ocean. The young man turned to Buck and said, "It mattered to that one."

 Author: unknown

Ms. C.

I had my first TBI survival meeting last night since finding out I have CTE. Traveled a long way because I can't seek help in my state.  I took up most of the meeting since I was new. It was good to be with people who understand. As everyone spoke I asked how they got there because I did not know. I was impressed by a girl who had a stroke. Nice girl. Her husband was there and very supportive. She is lucky in that. She works real hard. As they went around, I asked. One hit a telephone pole. Another hit his head on a pole. Done that more than once. I wondered how I made it this far. Was impressed with them all. It was good. Look forward to going again. Unfortunately, only once a month so found another; also out of state also. On the way home, I tried to figure out where I fit there. The only thing I got is they will get better and I will not. So someday, my chair will be empty. Hopefully theirs too but for better reasons.

I woke up in morning feeling like I just came off a bender; just like every other morning. I strangely remember those bender days or at least that feeling. I no longer drink because of control issues. I do things without thinking. They always seem to turn out bad. While laying in bed, trying to get up, I just thought, “I don’t want to go through this anymore.” Then I got it; the reason a lot of us commit suicide is not depression at all like I thought. It’s not wanting another day being like this. At least as I see it. I don’t know if that makes sense to anyone. I don’t know if that helps anyone understand.

Mornings I guess are the most emotional for me. But I finally get up, g to my computer and read the note I left the night before telling me what today is and what I have to do.  I started by putting what I did the day before but stopped. It’s like 50 first dates accept no date.

I forgot where I was going with this so I guess I should stop now. Sad. Only thing I have to talk to is a laptop that doesn’t talk back. Good listener though. Wish you all the best and don’t give up hope.

Denny

Sam, I get lost too on roads I have traveled all my life. I've learned not to turn my navigation off until I get there or I'll wind up in a different town. I know it's tough at a young age but it will only get better for you. You have a long life ahead of you. Keep at it and challenge yourself but not to excess. Your brain can only take so much. And yeah, people can suck sometimes. They have no clue. As time goes on you will weed those out who fit the suck category and keep the ones who understand. It's important that people you associate read this "Lost and Found" article and comments. Maybe that will help. You sound like a fine young man. Confident you will find your place.

Thank you for your encouragement. Have probably had 20-30 concussions. Hard to tell. 3-4 in the last year. I am new at this. I just thought I was getting Alzheimer's before my years until I saw a documentary about CTE and knew that was me. Just starting to get help. Went to the Brain injury Assoc. this week and they are going to help. Appears this has been going on for awhile. I'm somewhere in stage 3.  I have no support system. My wife doesn't understand even though the doctor tried to explain it to her. Told by a friend I am getting divorced. Guess just waiting on my papers. We still live in the same house and that gets very emotionally difficult to deal with because I don't want one and can really use her help right now. I found support groups I'm am going to attend twice a month. I feel so alone. Talking here helps. I want to be with people like me. People can read the symptoms but still have no clue what it is like to live like this. They don't understand. Thank you again.Denny

I was reading Denny's comment today and just want to say, keep seeking help and talking it through. It has been since 1996 and 4 concussions later, that I have been in recovery. I deal with issues everyday, you are not alone. I hope you have a support system to help you cope. For me, life gets better when I learn, let people know what I am dealing with and that it's "a one day at a time" process. Reach out to a local organization in your area and see if they can direct you in the right direction. As for me, one day at a time, and never lose hope.


 

I suffered a stroke five years ago at the age of 21. Processing information was the hardest thing I could do. My doctors would come in and speak with me and when they left I would have to turn to my mom and have her explain to me, as if I was a child, what they were talking about. My brain just stopped understanding anything. I could only understand simple things. I worked very hard and was able to luckily get most of it back. But even five years later, I still have issues. And fear I will live with these forever. I forget things constantly, living with lists is what I do best now. Sometimes I even lose myself driving. It's scary knowing at any second I can just wander off in my head and be somewhere else. I've learned to drive different ways to places, to switch it up so I have to use my brain to remember. I try so hard to control it, but it's exhausting. But some days are better than others. I still sleep a lot and sometimes make others mad cause I don't understand or I can't remember. But I've learned to live with it. I just hope one day it will get better. I pray for everyone going through this, we will make it through! ♥sam

God Bless, first, you should feel fortunate that you can read with understanding. I can not; I get panic attacks if I try. Way too frustrating so can't help you with the book. All I know is that you have to know the personality of the person you're interacting with. If they're impatient, or intolerant to begin with; that's on them. You have to expect that. I know it sucks. My wife has those traits and now that I appear to be getting worse, it's worse. I've learned to accept this; though it's not easy. I still see myself as before. Confident, witty, smart and 99.2% always right. Now I'm probably down to 30%. I live in CT. I looked into the Brain Injury Assoc and found one in RI. I have a meeting with the head of BIA tomorrow. Along with accepting your limitations, also accept theirs and don't expect too much from them. It will make things easier. I had to learn that the hard way. Don't take it personally. See if you can find a support group. I start my first one this month. I'm new at this and on this site. I didn't have that one life-changing injury. Multiple injuries finally caught up to me. You need to associate with positive people. I pretty well keep to myself except for a couple of people that love me no matter what. You are not alone. There are a lot of us out there but we are in the shadows. Trust in God. I do not know why somethings happen, but He will turn it around for you and someday you'll understand it, and maybe even grateful. And most important; be patient with yourself.  We can be our worst enemy.  Denny

I have had multiple concussions over the span of many years. 3 in the past year. Fear I have CTE. Been 6 months since my last concussion and I feel that I'm getting worse instead of better. My wife doesn't understand what I'm going through and why I do the things I do sometimes or don't do sometimes. We haven't talked since Christmas. I lost track of time and got home late from visiting family and friends. I was tTold she is divorcing me and I don't know why. I try really hard but guess I fall short of her expectations. I think I am what they call a flat liner. I shut off easily. I think she takes it as I don't care and I'm no longer there emotionally. It's hard dealing with everyday things now. Even deciding what chair to sit in at the table is an issue. Is anyone going down this road as well? Denny

Hello,  I want to thank the person who began this site...I have looked for years for something like a way to communicate with others who suffer TBI...I for one, had a Benign tumor removed in 2002....that was [I know] a long time ago..but the grief of lack of adequate communication with my spouse and now teenage daughter is overwhelming.   The pressure just keeps on building.   I wonder what books any of you have read to help?  I did go to a therapist who saw me right after the surgery, but she did not help at all.   I feel like no one understands me and puts me in a box to only satisfy them.   Wow...I said it.   I would just like to be accepted for who I am and lots of patience with my family for what I cannot measure up to.   Your listening is greatly appreciated!  God bless

Everything thing is different now. I have fear and get upset when people are talking in a group and I can't join in. They think I'm being rude but I cannot seem to put conversations separate, get confused easily and can't respond because everything is mixed up. I feel like screaming!

Barbara I know what you going through. I lost my memory back 1985 or 86 due to a yellow cab hitting the car I was a traveling in. I am still dealing with everyday things like loud tv or music or just conversation crows or even trains underground I don't get in them so it's really hard for me to go anywhere. I even lost contact with my lawyer and forgot the lawyers name. I never recover my money from my case in court. I don't know how to go about it since I can't remember my lawyers name. It's still is hard to cope with things.

My mom, age 76, fell the day after Christmas and suffered a TBI. We are in the early stages of rehab and working with her. I know it's early, but I'm worried that she won't ever be like she used to be. 😥

I had a heart transplant and my friend suffering from TBI sent me this article. It is so me right now! Thank you for explaining. I am sharing this with my family. Xoxo, AM

I suffered TBI & am *lerpching (reaching & leaping) to find WHO/WHAT I am. Additionally, EVERY human suffering from any brain injury walks a different path! I am "alone" NOT lonely! Nobody "gets me"....

People don't seem interested in knowing about my TBI. Everyone acts like they know exactly what I'm going through when in reality no one does. It has been almost 8 years since the wreck. I have learned to accept that and not be violent as much.

my boyfriend just recently got in a car accident and got a head injury. He accuses me of doing things all the time. I was also in the same accident but I got a broken scapula, ribs, and a punctured lung. He says it's disrespectful for me to complain. Is this normal for him to make me feel guilty? He thinks I don't love him and no matter what I say it's always wrong. Is this the head injury? What do I do?

It is many years since my brain injury, but I still have big problems trying to concentrate on more than one thing at a time. It has been some time, and trying to be the person that I once was, is a complete impossibility. I am sad to say.

Thank you thank you thank you! Putting this list together for me to see how I'm not imagining all of the various ways I've been affected after a TBI is so very helpful. Now I can share it with my boyfriend so that he can understand me on a whole new level. I was unable to communicate just how frustrated I was on a regular basis.

I had a severe TBI over 32-1/2 years ago and this is by far the best thing I have read. Interestingly I was at my DR's Retirement party this Summer. I am so lucky to have known him. Everyone knows of him: Dr. K.T. Ragnarsson. In reading this article I immediately thought of his comments. Here it is said:. Rehabilitation takes years after formal care is ended. He said, "I am sorry we do not have a cure ...yet." I have made important strides just this year. I will NEVER quit. Perhaps a cure is possible some day. Who am I to dispute the preeminent authority ? But I think the article, while excellent on many levels, should be corrected: Rehabilitation takes decades after formal care has ended. I do not mean to criticize, we are all on the same team. Jeffrey S.,  Patent Examiner and TBI SURVIVOR

I have been looking for this for the last fourteen years. I had a stroke at the age of eight and even I don't know what's going on with my own brain sometimes! Thank you so much for this wonderful site!

I'm not alone and neither are you. Keep fighting. This article gave me hope and a voice after loosing so much of myself in the accident. I see life differently, my emotions are very intense, I understand who I am "NOW" better everyday. Don't feel sad or embarrassed if family or friends let you down, you are going to get through this thing. I didn't know what a TBI was until it happened to me so I try to inform people who don't know why someone is better on the outside but still not healed but it's because the trauma is invisible. It can be hard if you have normal CT scans or MRI because you may feel like you don't have an excuse to feel different but you DO! I'm changed and that's ok with me now I know one thing for sure every single TBI is different like snowflakes no Traumatic Brain Injury is the same so keep fighting, use alarms for important times, make a list for each day, wright EVERYTHING down it helps your brain find new pathways and helps keep you on track so you don't have to ask or repeat yourself. I'm stronger then I've ever been in terms of sheer willpower. My husband is the greatest man on Earth he saved my life and he's the thing I love most out of this world along with our beautiful angels. I was lucky to have that one person to keep the faith for me when things get hard. My other family completely destroyed me after my accident. They didn't take the time to find out what is wrong or how they can help with communication and were mean and nasty. People didn't have the patients when I loose the word or forget what I'm doing. I get stuck in cycles that I'm not aware I'm taking so long because my seance of time is way off. For example hours and hours might go by with me thinking it's been minutes and sometimes things seem to be at a standstill it is very confusing but I'm finding new ways to be the new me and so can you. My husband told me I was doing find and he knows I'll be ok because I'm to darn stubborn to let go or stop fighting for what I want and that's a happy life.

My mom suffered Anoxic Brain Injury and went into a coma for 3 days. She knows my name, but doesn't ask questions. I miss my mom ❤️

Hello, very helpful information not only for me but for my family & friends in my life. This way the things that are harder for me to explain can be defined or explained better for the person if they want to understand me. thank you.

Dear Nov. 3rd and anyone looking for a place to start for resources and support groups, most states have brain injury associations, call them.

Barbara

I have a TBI and it's hard to explain to someone that doesn't know how it effects u..it's real easy for me to lose temper I'm not as fun and happy as used to be its been 2 years and what I remember cause I have a lot of memory loss is that I was a go go go individual and I been trying to get back in the work field but I'm 43 now and since I was 15 I've done heavy construction and operated heavy machinery and it's all I know and remember but now it's to hard on my body and I don't trust myself around others on machinery..what are my choices? I guess is what I'm asking... because I need to work.

She shouldn't try to work until she is ready and when working won't make her injury worse, hopefully loved ones can step up and support until that time comes. You can't push a river. Never push too hard with brain injury

My daughter has TBI but is trying to find a job. Where does she go?

I am a TBI survivor, twice. I am 56 years old, the first was when I was 17 years old, the last was when I was 34 years old. I have struggled, for years, to explain to my family and friends how I feel, how I think, how I compensate for what they take for granted. I have never been able to put into words what you just did. It has caused a lot of hard feelings and misunderstandings. I am so very grateful to you for this information. It will make things so much easier for me now. I hope I can search further with you for anything else you have available. Thank you with all my heart. Please feel free to contact me if you have any questions.

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