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

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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.
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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
I had a bicycle accident in 1995 that lead to a CHI TBI. I suffered a subdural hematoma; I was in a coma for 9 days; & I scored 3 (very severe) on the Glasgow Coma Scale. I was hospitalized for 2 months, & I went through 6 months of community integration rehab. While I was doing that I went back to college to see how my cognitive functioning had changed, and I volunteered at the hospital to see how my multitasking skills were. The hospital staff told me that I was very good with the patients, and my neuropsychologist suggested I explore a career in health care. The school I had returned to had a program in occupational therapy, I applied & was accepted, and I have been in OT ever since.
Dear September 2nd, I am a survivor of 21 years and when I am fatigued or stressed, the difficulties from my brain injury are magnified. Sometimes it feels like I am set back 15 years - BUT I know it is temporary and I will function better when I am less stressed. So my question for you is: could this be temporary, has anything changed in your life to cause you more fatigue or stress than normal? Take good care.

Thank you that was very helpful.

Dear August 8th, please look up the Brain Injury Alliance of Oregon or call them at 1-800-544-5243. Take good care.
i am 25yrs post tbi car accident to right frontal lobe & counter coup. It has been a hard road and still have the tiredness, depression , memory problems, brain fatigue.; but look like nothing is wrong w/ some facial scaring. sometimes i feel like an alien or something bc not many people understand me. Have been to therapy for many years which does help w/ the right doc==CBT cognitive behavior therapy. the TBI magnifys personality and the brain has a swiss cheese effect (memory has gaps if you will) You are in my toughts and prayers. Therapy from 16yo until now has made me strong willed & not wanting to ever give up on yourself. You guys are strong and powerful.
Hi. I suffered a severe head injury 20 years ago. Damage to the frontal lobe but not sure which side. For the most part, I think I've been okay but recently I've had some real problems. Major confusion and just feeling of being lost. Im supervisor for major drug store and took all eight drawers back to balance them, and totally forgot to count money and secure it. The poor opening manager walked into office with $6,000 laying around and paperwork not printed or anything. Its just by the grace of God that I wasn't fired. The job is very stressful and maybe too much for my mind. I do have an appointment Sept 11th with Neurologist. Is it possible to have problems this long after? I was in coma for 2 months and had a 15% permanent disability. If anything was explained to me I don't remember. I thought I had it beat. I guess I will find out the 11th. This article really does help. Thanks!!
This is really so awesome and I'm thankful I found it. I've been researching various areas I could study in college to assist other people like me, people with brain injuries. Just 7 short months ago (but seem like for-ev-er!) this upcoming Wednesday, I suffered a (grade 4-5 on the Hunt and Hess score) ruptured brain aneurysm somewhere in the right Sylvian Fissure. There is moderate softening of my right temporal lobe, and also some right frontal lobe damage. My, oh my. My aneurysm was a complete shock because we didn't even know my brain was harboring that little ticking time bomb. When it ruptured, praise God I was at home and my mom heard me hit something in my room/gasping for air. I have almost 0 memory from February 4-February 13, I'd say. It's really crazy and I had no idea, so to be "normal" then wake up with a brain injury in an unfamiliar hospital is insanely crazy. I'm only 24, also so it's doubly shocking because I don't meet the statistics for brain aneurysyms. I didn't (and don't) smoke, have high blood pressure, or anything much of a risk factor. I drank VERY occassionally (and light drinking at that)and it wasn't binge drinking, either. The only thing we can think of is that my mom had two family members suffer ruptured aneurysms, so perhaps it's some genetic thing? We don't know. All I know is that I'm so grateful to be alive, and I love God for giving me life again. I'm using this "second chance" to completly glorify Him and I definitely want to help people like me. My "brain buddies" as I refer to my fellow brain surgery/tumor/aneurysm/abnormality friends haha. So thankful for this article. :)
Sometimes I ask myself who has the true brain damage. Those afflicted with it, or does who do not or will not understand such easy concepts like those written by those concerned on this page. Where is human sensitivity and human compassion these days? And I don't mean human compassion, as "having pity on someone". It has nothing to do with pity, but plain and simple human decency. I am not a religious person, nor do I directly involve myself in such matters, but as in any honest and healthy life philosophy, this saying from the Bible says it all: "So in everything, do to others what you would have them do to you". It is so plain and simple to understand, and yet, there are people who still do not follow this simple teaching. I repeat my statement: who are really the brain damaged ones? When I read each and every sentence posted here, I was wondering what these people must have gone through, in order to feel forced to express something that should be more than obvious, unless of course, one is dumb, or a rock in the desert... I don't know the people who wrote them, but to all, and many more around the world, I can only wish a swift recovery (at their pace, naturally...), and a very happy and prosperous life.
My husband suffered massive frontal lobe damage an a subachnoid hemmorage last august 18,2012, he suffers every day and I suffer with him. My heart goes out to anyone that goes through this. I wish there was more help for TBI injuries! We are located in Alabama an there is basically ignorance an no emphathy for his pain. I wish for everyone to not have to suffer alone an get some help for constant pain, return to normal life, and struggles of daily life! Because of TBI, life is never normal again! We appreciate each day without a seizure or major problem. Thank you for the info on this site!
As I am reading this I feel relieved but scared. I have only been recovering from TBI for 5 weeks & am finding it very difficult as I feel guilty & frustrated. I see how my family are suffering by not having their mum/wife back to normal. They do not quite know what to do or say. It is hard to see them struggling not knowing what they can talk to me about, not to cause me stress and not knowing how much I can actually do. This web site will help them understand more. I experience nearly all of symptoms people have explained every day. It’s hard to come to terms with and not knowing how I will be from one day to the next, but I thank God I am alive and that I have my family. Thank you for such an inspirer ling site. J Sparkes England 23/8/2012
Well done. Some things to add: 1) In the earlier stages of recovery from TBI, we may not know we have physical injuries too because we don't remember what we were like before. So please have us fully examined by doctors experienced with treating victims of the type of incident that caused the injury.. For example, for years after the injury I experienced neck pain when I tried to tip my head back. I would just raise up my shoulders to give my neck support and reduce the pain. I didn't know it was not normal or to tell anybody about it. Now my neck movement is reduced to the point where people I recently met have commented on my neck's lack of mobility. 2) We may know we are adults and that we should be able to do things like drive a car or drink alcohol, but we may not understand why we are not allowed to do those things or why we are not being treated like an adult. 3) Alcohol consumption significantly impedes recovery. 4) We don't know what you're going through and may not understand why you lose patience with us. 5) We didn't do this to you.
Thank you, so much for the information. My sister and I (We) have been looking for "triggers" on what her husband should say and do to not make the agitation part worse. he has no clue and does not know what to do. I have been her support system and am trying to find support on the TBI in the state of Oregon. If anyone knows would you please let us know. Thank you again for your site it hopefully, it will help us understand more.
Wonderful. I had a large intraventricular meningioma removed 16 years ago, and these are the thoughts which have taken almost that long for me to put together for my family and friends. You said them beautifully, and help me also know I am joined. :) I will share with others. Thank you! nancy, missouri
I had a TBI about 12 years ago. I fell headfirst down a full stairway. My right forhead hit a step which I beleive caused me to flip over as I landed on my back, my pierced earrings were out of my ears and lying on the basement floor, beside my head and postion of my body was on my back with my feet right by the last stair step. I have no memory of any of this, and was taken to ER by ambulance. My first memory was awaking in the middle of the night, in a hospital bed and throwing up. My eyes were swollen shut and within a few days most of my face from nose up was totally black and blue. I was hospitalized for 3-4 days and then home. I had numerous tests and was diagnosed with a traumatic frontal lobe brain injury. Of course I have experienced most of the things, other people on this site, have written about. The thing I am wondering about is emotions. Not that I show too much emotion, but that I show too little. Has anyone experienced this? My life changed a alot after this injury. My life had always been filled with a lot of stress, death of husband (by suicide) at my age 29. Left with 3 childred to raise alone, lots of mistakes made, my own alcholism (now in recovery 30 years) along with what became 2 alcoholic children. My Son died 2 years ago after a pain filled life, emotional and physical. Again, my question on lack of emotion.