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

Return to article

Comments (811)

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 love this so much. it makes me feel so much better. its good to remind myself of all this.
Thank you so much for giving all of us TBI survivors an outlet where we can see that we are not alone. Thanks!
hi all.i had a car crash in aug 2008, i walked away without a scarch and worked for a week fell and hit the side of the door then went to my GP who gave me a sick note for two weeks,i payed for a mri scan and was told i had all the signs of post concussion sydrome and left to get on with it.i felt my head was to heavy,poor balance,did not feel hungry,was confused,couldent stand noise,have short term memory,feel tired all the time,have problems when there is more then a few people around me. i was sacked from my Job that i loved,and my family could not understand my behaviour
I am a TBI survivor and this fits me too the T. Thank you so very much, and keep up the great work!
I was really grateful for this article. I've been trying to explain some of these things to my family and aides, but I feel like I am being dismissed and then nothing changes. It is soooo great to have something in writing to give my words some authority (though, in a perfect world, I wouldn't need an article to validate my experiences).
I have a brain injury from a person who ran me over I truly can\'t believe how my life is and truly people who do not have this injury do not understand how we are or the things we deal with it truly It is bad I truly hate I lived threw this...
It's good too feel that other survivors feel like this, too. Everyone thinks I'm nearly back to normal. It's good to know that other people have the same oddities, it is not just me.
thank you for this info..i had tumor and surgery gong on 5 years in october..so hard for me to explain to my family and friends and doctors because i couldn't put it all together what's happening in my head and how hard simple things can get..i call it hitting a wall and even get nausus..this articla put it all into words that are now understood..God bless the panel and this foundation for the words...
I am 23, I got into a car accedent when I was 10 years old.... I get so frustrate with my feelings and emotions that I can never seem to describe how I feel.... My girlfriend is very negative and is always getting mad at me for forgetting things, and having to remind me of stuff... I really hope that when she reads this things will get better. I am going to get my dad to read it too.
Thank you so much for this article. I cried after reading it. I am going to have some of my loved ones read this as soon as I can. This article gave me words which I cannot find to tell them what is going on in my head. I was injured while on duty as a correctional officer and had my nerves severed in my jaw in two locations due to two punches to the face. It is 7 or 8 years later and I am on disability. I hate it and the fact that my ability to do things seems to be getting worse. I miss working, being able to work, and other things I seem to not be able to do anymore. I am taking my girlfriend with me to my first neurologist/neuropsychologist appointment next month. I have to know what I am dealing with because I am scared that this thing will progress and one day I may not know what I am doing as I am doing it.
I had brain surgery almost 3 years ago, and these are my thoughts exactly. Now I won't have difficulty in explaining what I'm going through. Thank you!
I love this site. I was brought here through a homework assignment, researching TBI and memory loss. I became a student of psychology in 2009. On October2, 2010 my husband was jumped by several men and was in a coma and in the trauma ward of the hospital until the end of March 2011. While hospitalized he suffered many surgeries including a tracheotomy.When he was released he was incontinent and on a puree and thickened liquid diet. He was in a wheelchair, and heard voices, and was up all hours of the night. In 3 weeks of him coming home,I was able to get a total of 20hrs of sleep. This made me manic and I had a hard time coping. He still suffers with balance issues and memory loss. But he is able to walk with a cane and has made leaps and bounds in his recovery. He no longer hears or sees things that aren't there. He does however have a hard time focusing on things and cannot attempt the internet yet; however, I read him this article and it made him excited and moved. He said that it "hit the nail on the head". We will definitely continue to visit this site, as it has helped him to understand why he feels compelled to do things almost in an OCD fashion at times. He also has trouble with feeling "drunk" at times, and was wondering if anyone else has had that experience? We enjoyed being able to read and comment without having to join anything as well. Thank you for this site!!!
Thank Jesus for this page, this has answered some questions about myself who is also a TBI survivor, my stress has been high because I've been asking for two years now why I'm so emotional now, why my head has little pains where my scar is,
I to have had a severe brain injury as a result of a motorcycle accident 20 years ago. Today I still suffer from Migraines and short and long term memory and seem to be a little more emotional at times along with being afraid of things. I used to swim really well and now if my face hits the water my brain says I can breathe well I now have a fear of water because of it. It has taken me 20 years to rebuild my life and glad I found this site because no one understands what it is like for TBI people. I was in a coma for 3 months and prognosis was not good. I was told I would be in wheelchair and not be able to do anything again. Well my faith in GOD has proven all wrong. I today own with my husband a trucking company and I do all the dispatching for the company and manage a house with 2 children and I have raised 2 other children. My hubby still has concerns why I act like I do with one things but this site will help him understand a little. I have had to relearn how to walk, talk, read, write. I still have some balance problems but the last fall I took was over 2 years ago so it is getting better. I have faith that we all will be cured if we have faith.
I was working on demiling rocket as a government contractor when a piece of it blew up on shot an object into my brain. Took a piece of skull with it... I do well most days I have a great family for support so I am very blessed. I do find comfort in reading about others. It helps me understand where I stand and my weird actions and words that I do! Thanks for the site!!
I was thinking that I was the only person, who lost all of their friends as a result of their head injury. It makes me feel better, seeing that I'm not the only one!
what a wonderful list. I'm 4 yrs post op for a frontal lobe tumor. Have lost all my friends, my parents and brothers no longer speak to me, and my career is ruined. Actually people have said I am selfish now and use the brain injury as an excuse. Feeling rather hopeless at this point. So I'm ready for a change. I've fought so hard but its time to move away and start over. I know these problems will persist, though, just glad I'm not alone
I am so happy and comforted to have found this site(now bookmarked!!).I have a TBI, from a head on collision on April 20/2008. I was in a induced coma for a week and my frontal lobe brain damage was accompanied by numerous fractures.My post-traumatic amnesia was 16 days and i am still recovering and rehabilitating from solely the TBI. The hurdles ive had to overcome have been massive. Apart from moving a lot slower my mood is ever-changing. Ive had to do 2 IQ tests to be able to work again as a high school art teacher and only work 8 of the 10 day work fortnight.My family have been my main caregivers and i have lost most of my friendships since the accident-but the ones that remain have strengthened.It really did seem like no-one understood anything i was telling them about the TBI and now i am moved to tears reading other peoples accounts of their own TBI-suddenly not alone!!Not only that but i feel more informed about TBI now and will continue to come back here for more info and insights.Packwood-Australia
Thanks to put all these helpful tips for the brain injury family.
Awesome article! It's really informative. I'm rather impressed to read this nice content. Love this meaningful post. Thanks for this excellent allocation. http://applerepairsinlondon.co.uk/applemacrepairs.asp
This is absolutely amazing. Honestly i never thought this could be put any better understandable way whatsoever even better its just one of those things i thought would never come out. It makes life a lot more appreciateable for TBIs when you find it hard and think that noone will ever understand you or anything unless they have experienced it for themselves (touch wood nothing happens..ok as im on the laptop touch metal/plastic/glass and cant be bothered to put laptop down and touch the floor hehe). I greatly appreciate this site and give many thanks who got up and did this...much loved. Peace Out n Spread the Love. Also i have come across these sites that i find useful "http://www.tbiguide.com/index.html", "http://secondchancetolive.wordpress.com/tag/coming-out-of-isolation-as-brain-injury-survivors/", "http://main.uab.edu/tbi/show.asp?durki=50770",
I have a traumatic brain injury I suffered 3 years ago. I had 3 surgeries, I have dystonia, I had a hole in my head, I have deep white matter damage, frontal lobe damage, on both sides, I have seizures, autonomic dysfunction and many other problems. This article describes me in so many ways and it is so amazing to hear other people's stories.
Thank you for this web-site. I suffered a frontal lobe seizure in Nov of 2013 and have suffered from everything you have posted on this web-site. I have been told I am crazy and there is no reason for me to be having these problems. Thank Goodness I am finally getting an appointment to see a TBI specialist. I want to be the person I was not who I am now. I am glad to know I am not crazy. This web-site is so supportive as no one else understands the after effects of a brain injury unless they have been through it.
These stories are so familiar. I had a TBI from a subdural hemorrhage in my right frontal lobe in 2008(5 years ago). I had bacterial endocarditis and subsequently had a brain hemorrhage. After an AVR and Craniotomy, I spent 45 days in the hospital and another 50 in two rehabs; my wife filed for divorce in the middle of these health events. The infection caused another valve failure in late 2008 and I spent another week in the hospital for 2nd AVR. These circumstances were compounded by the death of my father and termination from my job pre-illness. It has been 5 years and I spent the 1st 3 1/2 in a protracted property custody legal proceeding. I spent 3 years in psychotherapy being diagnosed with PTSD and ceased therapy when I felt it was not helping me. I still ruminate about these events and am devastedover the loss of my intact family. I remarried in 2010, but find the love/hate relationship I have with my ex prevents me from loving my current wife as intensely as I should. After 5 years, I want to be over this. I too, have short term memory loss, but my intermediate is functional and long term perfect. I had epilepsy from this injury and suffer from major depression constantly. I am on SSDI, although I am embarrassed by the situation. Having worked for over 40 years in white collar executive jobs earning 6figure salary, I feel useless and not contributing as I once easily could. I'm at a loss how to continue to live under this stress.
This site is now bookmarked, I found it said exactly how I feel. I cannot remember my accident but just to say I suffered 3 areas of damage on my brain. My partner is struggling to cope with my moods, a 3 year old and studying to be a nurse. My job is lost and I feel so helpless that I have healed the broken bones but cannot seem to do anything about the TBI. But reading this site lets me know I am not alone even though I live in scotland. God bless
I have had a brain injury aug 16 of 2012 and out of the hospital on sept 26. I was in a motorcycle accident helmet-less and I was out. Even when my body woke up I still did not. This was a great help and I do wish everyone read it so they know what was going on. It is hard don't get me wrong and I have short term memory loss sometimes and my mood changes ever so often. I will live with it, I must have lived for a reason. Thank you so much with this, it has helped me so much in life and something I will live with FOREVER.
Hello all, my husband suffered from tbi on 1/1/08 and we nearly lost him. He was in the hospital for approx 45 days, surgery, therapy and readmission due to another bleed. My questions to you are. 1. do you or your loved ones seem to wander around around the house and being restless. Also sleep habits are nerve racking, making all kinds of noises in his sleep making no sense at all. Has this happened to any of you. Your reply is greatly appreciated.
Thank you for this. I read it when my dear lovely friend was first injured, and, a year later, it still helps me deal with his periodic bursts of anger. He is still a dear, lovely, man. He feels terribly frustrated sometimes, and needs patience and understanding. Rereading this helps me give him what he needs.
All of these statements are so true. Even two years after my brain injury, I still have some of the same issues mentioned above. Add in being more emotional and being overwhelmed and shutting down when someone does something or makes a critical decision without your knowledge or advice. It is as if they think you do not have a brain to make your decisions....it is just that you cannot process things as rapidly as you did before. Life changes. The fatigue..the narcolepsy...the total overload of the system so you just have to STOP. Retraining takes time and some things may never come back. Patience and understanding is the best medicine!
I wish somehow I could get everyone in my life to read, believe, and follow the suggestions listed. It is very lonely not being understood by family and friends. Thank you for listing these points.
I recently not to long ago maybe like six months ago now suffered a brain injury.i lost my sense of smell almost completely..my left ear is no longer working i\'m deaf from it.and my taste buds have never been exactly the same as before. i am always tired i sleep more because i feel like my body needs it im not lazy i cant play soccer for my college anymore like i wanted too.my balance isnt the same i have slower reflexes im not as good in soccer as i was before.my question now is if my balance will ever be the same as before will it go back to normal one day?i hope soo
Thankyou soo much for writing this it explains so much . Last year I hit my head and had a stroke and a concussion . I was 16 years old when I had my stroke . I cryed when I read this it explains soo much . It is still hard to do stuff and I know now that it is normal for me to do this .
Hi there folks. On August 12 I was out training on my bike and got hit by a car. The driver was charged.I don't remember the accident and also have loss of memory for about 3 days post accident. I suffered a subaracnoid hemorrhage (right front lobal area), separated right shoulder and broken right tibia. I was in intensive care for 10 days, then 1 month in a rehab hospital and have now been at home since. I had no clue what awaited me regarding this accident. I had previously been in super physical shape and totally happy and living a productive, relaxed life. I immediately, once I started feeling what I thought was normal, thought I would heal quickly, or normally. I had to learn how to walk because my complete left leg, hip and posterior was "numb" and not responding and I had no balance at all. I seemed pretty accepting about that because as I began rehab, I seemed to slowly get a feel back in the leg. I sort of poo-pooed the fact I had the hemorrhage and that it would just get better. The accident happened Aug 12, it is now December 1. The feeling in the leg is coming back slowly and I can walk about 75 % of normal with balance slowly coming back, and taking its time (so I think). With therapy, my separated shoulder is healing and has almost 85 % range of motion and slowly getting stronger and my tibia is all healed up. My brain healing, however is a different story, and one I have finally learned to accept. I have never had as severe an injury file . These all happened at the same time. I had always been physically active and I coach as well(over 30 years now at the elite level ). This situation is a huge departure from a previous life for me and I am having problems with it from time to time...I am not back to work and likely not for a while yet. I was angry, very angry at first. Then I became very frustrated at how poorly I was feeling with poor concentration, tiredness, emotional upheavals, some confusions, being put on heart pressure medication, and a whole host of unpredictable feeings constantly coming up. I am finally accepting that I have a brain injury which will take quite a long while to settle into what might not be total normalcy. I have had to accept I am dealing with an injury that is very unpredictable and has changed my life substantially. I am trying to be more patient and less hard on myself and understand this injury is not like the broken limb which will heal within a certain time limit and more predictably. This has been my biggest challenge ....to understand the injury and then how best to ACCEPT it and now, deal with it. It is helpful to see there are others out there feeling as confused and frustrated and I am and that I hopefully can relax more with this condition that is affecting me. To live life despite the injury. Allow myself to get better. I'd love to connect with some of you....
For those of you wondering about the passage of time: I am 37 years old and had a severe concussion when I was 10; Jan. 28, 1986 was the date of my accident, about 2 hours before the first space shuttle blew up. While we believed back then that the brain could not and would not heal itself, time has proven quite the opposite. True, I don't remember hardly a thing from before I was 10, I can live with that. They told me I'd have epileptic seizures for the rest of my life but, by the Grace of God, I have never had a single one. That is not luck, that is faith. As the hospital I stayed in went out of business and the hospital charged with holding and organizing their records has since lost all record of it, I have nothing to go by except memory and what my parents tell me. I remember the X-rays and my mother's description of it as "it looks like an ice-cream scooper spooned out two golf ball sized holes from my brain in the left frontal lobe and the left parietal lobe." Good times, huh? Anyway, years of migraines, years and years of being denied Physical Education classes and years of poor balance (still can't ride a carnival ride to this day or I'm in bed for a week with migraines), but now I'm pretty much fine. I am the Network Administrator for a large company with over 200 employees and 14 nationwide offices. I fly across the country to set up networks and fix computer equipment when needed or manage the corporate office most days consisting of some 130 workstations. My point is: don't give up hope! This site has pointed out to me why I repeat some things, that I may very well not be OCD, as well as my trouble with crowds or (in my particular case) my tendency to get anxious with too much auditory input. Also, you can't scare me. You can't quietly sneak up behind me and rattle me or freak me out; I simply turn around calmly and ask what you want. Hopefully, this doesn't cause me to one day lose a toe to a lawnmower or get my arm cut off by something I should have reacted to but, for now, I've done alright. My brother got in a car accident over a year ago and had the top of his skull removed for some months to relieve swelling. He was unable to walk or speak or react to anything or anybody at the beginning yet he is now walking on his own (that's a really long story shortened up for you) and types out his own blogs to update us all on his progress. It looked very grim but he has worked his butt off to recover and is doing just that. My point, again: Do Not Give Up!! Take care all and God bless you!
I am so glad I found this site. I feel sometimes I am the only one that has these problems. People including or especially family think I am faking it. The ones you think would understand seem to be the ones who critize you. I see seem improvements but it is very slow. It is a fight for daily things that use to be so easy. It is just so great to know your not alone. Also that just because I am tired or withdrawn that does not mean I am depressed. Finding good help with the problem has been hard living in rural northern michigan.
Hello my fellow sufferers. I fell off of a horse in January, I think, of 2009. Blacked out, and still can't remember the slightest thing about the surrounding 12 hours. Less than a month later a friend kicked a volleyball into my head by accident. A year later after about three other small head bumps I hit my head really hard 3 times in one day all by accident. Over the next 2 years I bumped my head at least once every couple months and then this past March another ball was kicked into my head by accident. So a total minimum of 4 concussions in as many years. I was in my freshman year of college when the first two concussions happened. I made sure to only call my parents when I was feeling pretty good so that they did not know how badly I was doing, because my muddled mind thought that I would be OK if I could just make it to the summer and then I could sleep. And then once I had made it through the worst part how could I wimp out on the next 3 years of college? So I graduated, I don't really remember the second semester of my freshman year, the semester I hit my head. My parents are always trying to give me this or that vitamin or tell me to exercise more or drink more or sleep more or less or whatever. They don't get why I spend most of my time curled up in a ball watching TV or texting my friend. I have one really good friend and the reason we can be such good friends is that she has genetic chronic migraines and I have PCS. We both feel pretty awful about 90% of the time and we both were stupid enough to stick it out and graduate from college. Thank you for this article because it makes us feel less alone when we are surrounded by the people we love the most who don't understand us. And for the brave who dare to try to share this, this is a perfect communication tool. I wish you all the best of luck. If you have PCS DO NOT GET A SECOND CONCUSSION!!!!!!!!!!!!! Live Long and Prosper, Margarite
A huge thank you for expressing and publicising what so many of us are going through. This is really helpful.
My TBI w/substantial cognitive disorder was diagnosed nearly a yr after an assult/batter/strangulation/head slamming going on 15 yrs now. I just lost one of my two best friends with an e-mail \\\\\\\"she would like to renew our friendship after I get over some paper work I have been compulsive with. I also speak too often about all the injuries from head to toe too often\\\\\\\". Can\\\\\\\'t let it go. Ex abandoned me after 32 yrs of marriage one yr prior to assault. So many problems with short-term memory, paper work. Long term-memory nearly perfect. Most lost of memory after the assault for 3 yrs. I now realize \\\\\\\"loss of friendship, close friends, is part of this horrible injury. Lots of therapy. Even a Neuro/Psych test taking 2 days due to my falling asleep during it. Results to my therapist, \\\\\\\"treat her for chronic pain\\\\\\\". Are others losing very close friendships? I know it must get OLD hearing the same old story I don\\\\\\\'t remember telling that often.
As a Irac war veteran I was involved in a blast near me. I thought I was not injured until much later. I am not the same, I cannot understand people when there is too much noise. I get overly tired and exhausted. I most of the time have little emotions and do not want to talk. I will get overloaded and become mute in public. Sometimes I think it is just my imagination and that I was not hurt. But I was. Thank goodness for this website
I was in Irac, when there was an explosion. I never knew I had Mild TBI until much later from the blast. My personality has changed, I can\'t hear when more than one person is talking. Going to Walmart is like info overload. I will in crowded areas not be able to speak at all like I just cannot function. Sometimes I think everything is in my imagination and that I was not hurt. This website is very good in describing somethings. Cindy
It's been almost four years now and I have discovered that there seems to be a "statute of limitation" on how long friends and family are willing to listen and understand. Whatever the time length of their patience is, I passed it long ago.
Hi Thank you so much for creating this page. I have suffered more than one traumatic brain injury. I don’t find it easy at all, even though I try to explain by sending info like this to new friends, they still don’t fully take on board this advice. I feel after many of years of neglect on the part of varying persons both who work within the NHS & friends & family, there is still huge ignorance with regards to the basic day to day interaction with people. I have met an occupational who never talked to me directly about particular concerns she had. Based on her decision my care plan was taken away completely. With much relief I now have an occupational therapist that really cares & is a credit to her profession, for which I give many thanks. Everyone I interact with say “I forget you have difficulties, because you appear so normal & bright”. If this were any other minority issue, this would be totally unacceptable. I feel after many years I have stepped back from much human interaction due to the sheer ignorance of both some professionals & most daily interaction. I have gradually become more isolated, as I find the effort it takes to remind loved ones constantly how they can help seems to fall on death ears. I do want to end by saying thank you so much to all those that do care & make a huge difference in so many ways, you are in all walks of life & you make living a joy. I HOPE VERY SOON EVERY ONE WILL INTERACT WITH BRAIN INJURED PEOPLE HUMANELY.
I was in a severe car accident in 2002. I was in a coma for 3 months. Diagnosed with brain injury. Since it has been 10 years, I wonder if I am healed. I still have a hard time hearing, especially with background noise, I use a walker and my speech is not very good. My family treat me as normal, but sometimes I just don't get it. Am I semi-normal? if you have any response email me at Kim_Krekel@yahoo.com
It is very important for friends and family members to realize that sometimes a TBI individual can exhibit sociopathic, cruel behavior. This is not to scare anyone away from engaging with or helping a loved one, but rather to help them better. Recent research has shown that persons with TBI are more likely to exhibit criminal or anti-social behavior. The frontal lobe is in control of personality qualities such as empathy (a very important quality!), but a person\'s intelligence is often not affected. This can make for a very toxic mix. I entered into a relationship with a woman with TBI, who exhibited many of the qualities listed in this website such as saying inappropriate things in social situations. I chalked this up to a quirky personality and proceeded with the relationship, but in a few months began to piece together her behavior with an accident earlier in her life. Her behavior became so cruel and manipulative toward me (and her child) that at times I became frightened for my own safety. What saved me was doing my own research on the brain, and this website only confirms that she has undiagnosed TBI. Or perhaps it was diagnosed but there is too much stigma to come forward with this. I was able to show her patience and compassion, something she never received from her previous relationships. We still communicate. Protect yourself first emotionally, otherwise you can\'t help them.
My husband has frontal lobe damage from being hit by a car almost 20 years ago. He is still dealing with the seizures, the anger, depression, and other confusing brain functions. I don\\\'t understand any of it. I\\\'ve read the articles and done tons of research. I am trying really hard to relate. He has tendencies of violence that come and go very quickly during an argument. But severe enough for me to \\\"kick him out of the house\\\". I\\\'m trying to be patient and understanding but I think I need help. Any suggestions?
We are just beginning our journey of TBI. Our 25 year old son is still in a coma from an accident that resulted in a subarachnoid hemmorhage on September 29th. We don't know what the future holds or what his eventual outcome will be. We do know that these upcoming years will be unlike anything we could have imagined. We also know that we are not alone, as is evident by what everyone has shared here. Our family is in crisis, but we are together and unified in our support of our son. Thank you all.
I am a TBI survivor for 5 and a half years now. This is great information exactly how I feel.
Finding and reading these expressions of despair is such a surprise but oh, so helpful, to know that others do have the same feelings as I. It is valuable to know that others experience the confusion, lack of former abilities, constant pain, problems walking, seizures and trouble speaking. I am sorry that others have these familiar results from brain injuries but relieved to better understand my own problems now. To know that I am not just imagining them..as the insurance company insists. I hope I will find my way back here again. I feel I know you all as though you are sitting here with me describing what your days are like and I sense your anquish. It is true --because the injury is not seen, no one understands what it is we are going through -- we LOOK TOO NORMAL!!! I am into my 6th year and no friend or family member has any idea what is happening to me on a daily basis. I am so sad for all these returning service men and women with their head injuries. I wish we could all get together and help one another. Perhaps if we could have this or a similar site readily available --easily found-- since we are unable to attend a group meeting-- this would be so useful no matter where one lives. Good luck, maybe we will meet again, I will look for you. Thank you. The best of luck to each!! Mary in New Jersey 10/8/12
hello,my name is Pete and i am new to this,i suffered a TBI july,2010 and im still struggling to walk independantly! sure its only been 2.5 years but man am i frusterated! im looking for other to email or talk with that have had this happen to. petey677@hotmail.com or let me know here
10 days a go they found my brother outside unconsence bleeding from his ears and nose, he was in a comma for two days. he cant remmember what happend or remember friends.he cant talk, he is straggling to hear he is loseing his hearing and the doctors say they cant do nothing untill all the blood in his head has dryed up, he is in africa where the health system is not as good, we are worried we dont know what is going to happen to him. there are lots of people here that went through this before so if anyone can give me some advice and or if you have been through this before please let me no. linda lindaam53@yahoo.com