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

Comments [321]

Barbara J. Webster, Lash & Associates

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

I need a lot more rest than I used to. I’m not being lazy. I get physical fatigue as well as a “brain fatigue.” It is very difficult and tiring for my brain to think, process, and organize. Fatigue makes it even harder to think.

My stamina fluctuates, even though I may look good or “all better” on the outside. Cognition is a fragile function for a brain injury survivor. Some days are better than others. Pushing too hard usually leads to setbacks, sometimes to illness.

Brain injury rehabilitation takes a very long time; it is usually measured in years. It continues long after formal rehabilitation has ended. Please resist expecting me to be who I was, even though I look better.

I am not being difficult if I resist social situations. Crowds, confusion, and loud sounds quickly overload my brain, it doesn’t filter sounds as well as it used to. Limiting my exposure is a coping strategy, not a behavioral problem.

If there is more than one person talking, I may seem uninterested in the conversation. That is because I have trouble following all the different “lines” of discussion. It is exhausting to keep trying to piece it all together. I’m not dumb or rude; my brain is getting overloaded!

If we are talking and I tell you that I need to stop, I need to stop NOW! And it is not because I’m avoiding the subject, it’s just that I need time to process our discussion and “take a break” from all the thinking. Later I will be able to rejoin the conversation and really be present for the subject and for you.

Try to notice the circumstances if a behavior problem arises. “Behavior problems” are often an indication of my inability to cope with a specific situation and not a mental health issue. I may be frustrated, in pain, overtired or there may be too much confusion or noise for my brain to filter.

Patience is the best gift you can give me. It allows me to work deliberately and at my own pace, allowing me to rebuild pathways in my brain. Rushing and multi-tasking inhibit cognition.

Please listen to me with patience. Try not to interrupt. Allow me to find my words and follow my thoughts. It will help me rebuild my language skills.

Please have patience with my memory. Know that not remembering does not mean that I don’t care.

Please don’t be condescending or talk to me like I am a child. I’m not stupid, my brain is injured and it doesn’t work as well as it used to. Try to think of me as if my brain were in a cast.

If I seem “rigid,” needing to do tasks the same way all the time; it is because I am retraining my brain. It’s like learning main roads before you can learn the shortcuts. Repeating tasks in the same sequence is a rehabilitation strategy.

If I seem “stuck,” my brain may be stuck in the processing of information. Coaching me, suggesting other options or asking what you can do to help may help me figure it out. Taking over and doing it for me will not be constructive and it will make me feel inadequate. (It may also be an indication that I need to take a break.)

You may not be able to help me do something if helping requires me to frequently interrupt what I am doing to give you directives. I work best on my own, one step at a time and at my own pace.

If I repeat actions, like checking to see if the doors are locked or the stove is turned off, it may seem like I have OCD — obsessive-compulsive disorder — but I may not. It may be that I am having trouble registering what I am doing in my brain. Repetitions enhance memory. (It can also be a cue that I need to stop and rest.)

If I seem sensitive, it could be emotional lability as a result of the injury or it may be a reflection of the extraordinary effort it takes to do things now. Tasks that used to feel “automatic” and take minimal effort, now take much longer, require the implementation of numerous strategies and are huge accomplishments for me.

We need cheerleaders now, as we start over, just like children do when they are growing up. Please help me and encourage all efforts. Please don’t be negative or critical. I am doing the best I can.

Don’t confuse Hope for Denial. We are learning more and more about the amazing brain and there are remarkable stories about healing in the news every day. No one can know for certain what our potential is. We need Hope to be able to employ the many, many coping mechanisms, accommodations and strategies needed to navigate our new lives. Everything single thing in our lives is extraordinarily difficult for us now. It would be easy to give up without Hope.

Excerpted from Lost & Found: A Survivor's Guide for Reconstructing Life After a Brain Injury by Barbara J. Webster. © 20ll by Lash & Associates Publishing/Training Inc. Used with permission. Click here for more information about the book.

Comments [321]

Me ayudo mucho esta informacion. Mi hermano sufrio un accidente y tubo un severo golpe en la cabeza y fracturas en las piernas. Ya salio del hospital y esta en casa, mi madre lo cuida no pudimos llevarlo a una rehabilitacion porque no tiene aseguranza medica. Es lo peor que nos a pasado es como una pesadilla no lo podemos creer. pero el en este momento tiene cambios de actitud y no reconoce ami mama ni su pasado solo algunas cosas. Si es frustante pero se que lo va a superar el tiene 26 anios y es papa de tres hijas.

Oct 14th, 2014 4:42pm

I've had a brain injury for almost 14 years and it hasn't gotten any easier for me. I have a husband who has complex PTSD and it's very hard. I have to put myself last most of the time even though I can't cope with things myself... Trying to figure out how I'm supposed to cope with this life.

Oct 8th, 2014 7:53am

Please join our Facebook group "caregivers and parents of Post concussion syndrome." Having a community of families going through it really helps. My daughter is 3 years out, and still takes 2 medications. It can be a long process.

Oct 6th, 2014 10:56am

I work with all kinds of brain related people its a very rewarding job when people start to respond to rehabilitation the brain is a complex thing takes time and patience but in the end its amazing how it can repair its self

Oct 5th, 2014 6:46pm

I'm searching for help for my daughter,19,suffered a "mild traumatic brain injury" ,4 years ago.She was 15 and everyone kept telling us to be patient,it'll get better.But,it hasn't.She's struggling,isolated,frustrated and much more.I am a single Mom,who's had Fibromyalgia for 15 years.I know what it feels like to have an invisible illness.But,I have found my inner strength and gotten my life back( 8 years now).Nothing compares to the pain of watching your child suffer and not knowing how to help or if you're doing the right things.

We live in York,Maine.I'm hoping to find support for her and myself as well as my youngest daughter,who's 17

Hoping someone will see this and help me...my daughter says "she just can't do this anymore" 

GOD BLESS,

Suzanna

Sep 29th, 2014 4:11pm

This is so helpfull to me and describer most of my problems and I'm sure can help my friends and family cope with different things that they think are just me. I love that you understand and I'm not the only one out there because it sure does feel like it. Ive been thinking about going to a brain injury group and this article has helped me make my decision. I feel being around people like me may make me feel more apart of this world not just an inconvenience to my friends and family who have no choice but to put up with me. Thank you so much other survivors!!!! Matthew Rayner

Sep 21st, 2014 9:31am

I wish that my friends and family could read this because it fits me perfectly and I can't explain it to them. Thank you for writing this article.

Sep 19th, 2014 4:14pm

Wow!! This was helpful to me. Mirror image of what I've been trying to get out of my mouth. I'm just starting the doctor pass me around process for multiple concussions. It's hard to get things clear where they understand me. I will show it to my doctors.  Thank You so much for SHARING this article.

Sep 14th, 2014 12:40pm

Beautifully written, clear and explains well. Well done and thank you!

I'm an english brain injury survivor (medical errors) and would love to try to translate this into french because I now live in France. Please would you allow that if I credit you with its creation? I might think of more - but I can't do lists nor keep concise like you! Many thanks, Jenny.

Sep 13th, 2014 2:42pm

Hello my name is Rudy Maddock. I have a brain injury also. My life is wonderful, God is so great and has done so much for me. One thing that I see is every or most are very different. Not all injury are alike but all have God that's why were all still here.

Sep 13th, 2014 1:21am

I want to write my own book - I have a lot to say, since I am a "survivor" also. Although, many times, I feel as if I'm doing just that - "surviving"... !

Sep 12th, 2014 12:57pm

I am a survivor and reading this feels like my own words, well written.........❤️

Sep 11th, 2014 8:31am

I suffered a brain injury in 2008, had 2 brain surgeries and then another for my epilepsy. Having read this article, I now know that not only am I not alone, but that lots of people have similar symptoms as me. I am still learning new things, and sometimes re-learning the things I've forgotten. Thank you, that's all I can ultimately say.

Sep 10th, 2014 8:30pm

Such great information and advice !

Sep 9th, 2014 10:10pm

Everybody that DO NOT have brain injury needs to read this.

Sep 9th, 2014 8:12am

This is great and so true!

Sep 6th, 2014 10:40pm

I'm a survivor from TBI it hurts but there is nothing that helps, but on April 21, 2010 changed my life forever! The Auto Accident change my life forever but I have to continue living with problems from day to day! :(

Sep 6th, 2014 11:28am

These explain me pretty much to a T. And my tbi was at birth, so I can only imagine how confusing and frustrating these changes are when a tbi occurs later in life.

Sep 6th, 2014 10:43am

Please do a google search for rick simpson n phoenix tears. There are some ebooks that are helpful concerning tumours amoung other things n how to improve ones' condition. You can donate or access them for free. The point is to help people n empower them in their health. Be well~

Sep 5th, 2014 7:11pm

Thankful for this article. I couldn't read all the comments to see if anyone with chiari malformation could relate to this (I might read them all on my next sleepless night), but I can. Chiari malformation is a condition where part of your brain (cerebellum) hangs out of your skull and possibly into your spinal canal. My chiari malformation has caused a syrinx (cyst in spine pressing on my nerves), scoliosis and problems with my neck.

Chiari malformation doesn't just suck because of all the different symptoms, but also because you appear to be healthy so people don't understand that you're truly suffering and impaired. One moment I'm fine and the next I'm not. Some days my symptoms are more physical, such as horrible head and neck pain, right sided weakness, my right leg drags, pain and tingling throughout my body, lack of coordination,  or drop attacks. Other days my symptoms are not something you can see when you look at me: confusion, difficulty with memory, speech problems, dizziness, trouble focusing, irritability due to over stimulation and depression. 

I don't think I would ever want anybody to be able to look at me and see my invisible illness, but looking well on the outside when you're not on the inside can be extremely frustrating at times. People may suggest you just need to take certain vitamins, exercise or you're faith is just not strong enough for healing. You know friends are disappointed when you back out of something because of your illness. You wonder if people think you're lazy, attention seeking or weak. It's bad enough when you wish it would all go away but it won't; it's even worse when you finally accept the way you are and others don't. You want people to understand what you barely understand yourself.

Thanks for this article.

Sep 5th, 2014 4:52pm

Hello,

A good friend of mine received a traumatic brain injury a few months ago. I came across this article looking for different ways I could support her on the long road she now faces. She has just recently moved from intensive care into a rehabilitation setting. The rehab home she is in seems really good and there is a lot of support for her with physical things - swallowing, starting on soft pureed food, using the toilet instead of adult diapers, standing, walking, talking, washing her own face etc as she slowly becomes able to attempt these tasks. They think that in time she may be able to speak again, possibly be able to walk short distances, eat soft food and they are currently discussing whether she will need ongoing care or whether she will be able to go home eventually. She has made excellent progress so far, and the rehab home have been good at trying to show us how to support her with physical tasks, like using the artificial tears to ease her dry eyes, and artificial saliva, things like that. But they have not given us as friends so much information about the actual cognitive side of things, so this article has really helped me to understand better. 

Thank you.

It is striking how similar many of the "thinking" effects are with other conditions. This article has helped improve my understanding and I know now to not overload her with too much chatter or changing the subject too fast etc. It is hard at present as she is very limited in how she is able to communicate with us. She appears to understand what I am saying to her, for example if I tell her about something that has happened and she doesn't agree, or is annoyed etc she swipes her arm to the side. When she approves of something I say, she lifts her arm up and down in a quick movement. Sometimes when I was talking she would thrust her hand forwards as if to say "STOP"! I had assumed this meant stop talking and so would shut up, which makes her do the sideways arm movement. I had felt confused, now I realise maybe I was talking too fast or she needed time to process.

I wish everyone who is living with a brain injury all the best for your future.

Emma x

Sep 5th, 2014 2:14pm

I have a rare malignant brain tumour that surgery, chemo, or radiation, will not shrink. ...but can cause more damage. I read this article and found that I related to each and every one of the symptoms and more. Even though my problem has not been "fixed"I still have those around me that either forget because I look nearly normal on the outside, and imprisoned on the inside.  In my case, it's impossible to get others to accept and understand without  accepting their own fear and sense of loss...no matter how embarrassing or angry they say the symptoms are. As the tumour grows, so do my symptoms. There is nothing I can do about that...and yet so often they think it is in my power. If that were so...would not the pain? Would not my ultimate death?

Juanita van Tol Martel

Sep 4th, 2014 6:15am

Thank you this is so me

Sep 4th, 2014 3:42am

Thank you!! This is the most helpful read and information i have received in more than 9 months in dealing with a beloved person who suffers from brain injury. Thank you

Sep 2nd, 2014 4:26pm

Wow, thank you!!! You just discribed my husband's issues and I had no idea, how much he is frustrated! 😔

Sep 1st, 2014 1:55pm

I spontaneously started to cry when reading this. I wish I had read this article 12, at least 10 years ago.

I never knew during all those years how to tell people around me what's going on with me after TBI. How to even correctly describe the symptoms to the Doctors. Myself being a language professional, I simply failed to make them understand. I was never able to express the problems of my brain with words.

I usually said :  "If only I were able to describe, then I would not have these cognition problems. I cannot explain the just because of the impairment."

Most people did not understand me in our fast-paced world. And in fact, our modern world with its modern technologies is advancing faster than I can follow. And after 12 years of living with brain impairments, I am pretty much alone, behind, whilst former "friends" moved on.

Nevertheless,  I have never been enjoying Life more than in the 12 years following TBI. At least I know now how to cherish ever day and to enjoy every moment. Slowly. At my own pace.

If only the CAPTCHA of this website would be better adapted to the needs of TBI survivors. It is a technical challenge for me to post this.

Audrey

Aug 30th, 2014 3:42pm

I've had two emergency brain surgeries after being assaulted by 5 grown men with baseball bats when I was 12 now half my skull is metal but the hardest part of recovery was mental and the frustration with some of the aftermath like my horrible memory

Aug 19th, 2014 7:08pm

Thank you this explains what is going on at the moment for me approx 8 weeks after 2/3 brain falls & knocks. If do too much am wiped out. V. hard to tell what level of activity is ok or not. 2:steps forward 1 step back.

Aug 1st, 2014 6:15pm

I suffer from OCD and let me be the first to say here after reading all your comments that a lot of these issues listed actually i can relate to.

God Bless you all for the hardships you all endure. May you seek justice in having mental freedom one day

Jul 29th, 2014 10:27pm

I fell on January 2nd of this year and hit my head very hard on the concrete. For a while I thought everything was fine but I'm finding out, it's not. I'm just now back to work full time and am finally getting some treatment. That list is pretty much me. I'm trying but it's not easy. Starting to come to grips with "the new me". Just wish everyone else could.

Jul 10th, 2014 2:52pm

There is always hope. I have progressed further than even I expected. Someone asked why I wouldn't want my old self back. I am so much more full of life now than ever. I do have limitations. The greatest thing I discovered on this journey, is how to live in the present. The past is sketchy at best and the future requires too much thought. The other great thing I discovered is that this brain injury is a loss of self and that it affects the whole family. As soon as I was cognizant of this idea and I began to legitimately mourn the loss of myself as I knew me. I had my identity crisis and I began to find the best ME, I could ever be. I am so thankful someone put into words so many feelings I couldn't. I can print this out and share it with people who might not "get" me. My injury is 13 years old. I have chosen to nurture it lovingly as a child whom one wants to grow up healthy and strong, rather than treat it with hate and disdisrespect which would raise an unruly child. Thankful are another gift.

Jun 24th, 2014 8:03pm

I am not sure if what I went through is concidered TBI or not but all of this sure fits what is going on with me. I have had colloid cyst removal of the third ventricle, twice in the past twenty years. First my long term memory was messed up and now my short term memory does not function well. I get stuff occassionaly that sticks but most of it feels like it falls through the wholes. I look fine physically but mentally and cognitively I am not. So my question, I guess would be, would those two Neuro surgeries be concidered TBI? Thanks in advance for your replies.

Jun 22nd, 2014 3:13pm

Hello; I have tried to post a couple of other things here, but have been unable to see them posted, so I don't know if I have done it correctly, so here is another attempt.

I suffered by brain injury during the first of a dozen or so surgeries to remove a nearly 15 year misdiagnosed/undiagnosed benign cystic tumor in the middle of my brain.  Apparently, I suffered a hemorrhagic stroke when a surgeon retracted too roughly and damaged a major artery in my brain causing a "micro hemorrhage" as my family was told.  Sounds like a contradiction in terms to me.  This left me nearly paralyzed on my left side and with no memory for at least a year and a half, as well as other cognitive deficits.  As a result, I lost my job, my ability to skate and compete (on an adult synchronized skating team), and my independence, among other devastating losses.  After A LOT of hard work, I was able to reclaim about 90% of whom I once was.  From what I have read on this site, I am not alone in my losses and in a strange way, it is nice(?) to see that others can commiserate and empathize and not just sympathize. It is great to be able to have a "safe" place to talk about my experiences without having someone tell me that I should get over it and just not think about it anymore.  I'm not a glutton for punishment and certainly would if I could and perhaps being able to vent about this could be cathartic and I will be able to forget someday.
 

Jun 15th, 2014 10:49am

This all sounds like chronic fatigue and being annoyed. Also can be confused with menopause., irritable aging depression etc. brain injury sounds a lot to me like nerve damage all over

Jun 14th, 2014 5:46pm

~In October of 1999, I suffered a brain injury during the first of around a dozen brain surgeries to remove an approximately 15 year misdiagnosed/undiagnosed benign brain tumor, which caused me to experience vision loss as well as other visual phenomena in addition to the severe headaches every day.  During the first surgery, I'm told, I suffered a hemorrhagic stroke that left me nearly paralyzed on my left side and with no memory for at least a year and a half, as well as other "cognitive deficits".  The tumor had already affected my metabolism before the surgeries as I was a figure skater on an adult synchronized skating team, practicing up to six hours per week with the team as well as on my own depending on how close to a competition we were, and still could not lose any weight.  During this time, I self-medicated with combinations of analgesics to "manage" the severe pain.  It never really went away.  In addition, I was losing my vision in a hurry, going through glasses prescription after glasses prescription until the surgeries.  Despite my numerous complaints to many different medical professionals, NO ONE followed established protocol and sent me to the hospital to get a CAT Scan or an MRI or even refer me to a specialist until it was almost too late.  By the time I was finally diagnosed, I needed emergency brain surgery, but because I had gotten so efficient at managing the pain on my own, I didn't take the neurologist seriously when he said that I needed to meet with a neurosurgeon immediately and instead insisted on attending training in upstate NY for the next higher position at work and drove there myself.  I'm told that I sent everyone into panic mode. 

As a long term consequence of my injury, I lost my job, not that I could remember where I worked or what I did for work at that point anyway.  I could not remember having been to college and what my degree was in or even if I did indeed graduate.  I also could not remember having finally achieved my childhood dream of skating and competing in a national competition at the age of 32.  I didn't remember getting married and to whom and did not remember who my family and friends were and their names.  I didn't even know my name, age and my birthdate.

Now, almost fifteen years later, I'm told that you would never know by looking at and speaking with me, unless I told you, that I had any of this going on in the past.  I worked very hard to achieve this so that I could go back to work eventually.  Fortunately, I have been able to get and keep a part-time job that won't stress me out and cause my memory to tank.  It is still like walking a tightrope as far as that is concerned.

Jun 14th, 2014 2:44pm

This is a wonderful article. My TBI was 20 years ago after I was rear ended by a semi. Thankfully I was pregnant, so they had to keep me in the hospital instead of sending me to a nursing home. My coma lasted for 3 months. My son was born healthy and is now 20. After I woke up, I compared my brain to a jigsaw puzzle that got mixed up. As I would get a memory back, the piece of the puzzle would be put in place. Not every memory is back, some will never be back, but I am alive, have 2 wonderful sons, and am getting re-married next month.

Jun 14th, 2014 9:20am

This is so awesome and so me! Very well written. Thank you for sharing!

Jun 14th, 2014 1:40am

Thank you for this list this list of items I have asked requested and hoped others would donot many people do them however eveeverything on this list I am affected by sadly said... I just wish sometimes people would show some more support... I am currently trying to lose weight that is just one step towards rebuilding my self esteem and self image of my self..

Jun 13th, 2014 9:16pm

I can't even put together all I wanted to say....wish I had a shirt that said..." Hold on ..give me a minute....TBI survivor and I am still processing what you said! Thank you for your Patience!" Most times they've already walked away or shut me off from the conversations.

Jun 13th, 2014 1:50pm

Yep I hear ya pples it's like this fee me.....I feel like a dog that is caged and the cage is open but I dont see it and ima wondering just how I can get out of it

Jun 13th, 2014 1:06pm

All I have to say is Thank You. Thank you so much.. Some of these things I did not realize could be related to my TBI. I feel at peace and more self-aware from this article and the hundreds of others who have commented.

Jun 11th, 2014 6:34pm

I have a friend that has a heart pacer the battery died and he had a stroke he can't talk now or read what are the steps to for recovery!!!!! Please help

Jun 10th, 2014 8:24pm

2017 will be 40 yrs since I was blessed with a 'bruised brain stem' from a head-on collision. If that's not a TBI then I don't know what is. In 1977 I did not have the kind of resources that we have today. I came out of a 32day coma with every sign and trait that I have read about only recently..However in those days I snapped back, looked fine,and was sent back to my Hi Skool where for the first time ever, I got to experience 'SummerSkool', in order to graduate.As I said, I 'looked fine' but I can remember going through each and every symptom described in the article here. And a few more that I can't remember. This description is among the most accurate that I have seen thus far............ Life Goes On

Jun 6th, 2014 10:51pm

Gee, I wish I had this 14 years ago, when they removed my GBM!!  This is WONDERFUL!!  THANK YOU SO VERY MUCH! Now, we just need shirts that say all of this!

Lauri a/k/a NeonDiva Holland

Jun 5th, 2014 2:42pm

Hello everyone, I'm Shawn and I was teaching my best friend how ta ride his brand new street bike on June 16/2000 when I was hit head on by a brand new four door one ton Dodge Ram 4x4 longbox truck that the guy who made a completly illegal left turn across a solid double yellow line and took me out at roughly 120km/h ta put it easy. So I have a major TBI and they said Id never walk or talk again and I spent 13 1/2 months in the hospitals and the first 3 1/2 months in a comma but now Im back to about 90% and I took myself of EVERY medication and I take one 100% natural/organic medication and I feel like a MILLION BUCKS!!!!! What everyone thinks and the REALITY are two COMPLETLY diffrent things!!!!! You should NEVER judge ANYTHING you have NO idea, cause one day you NEVER know whats around ANY corner!!! From Shawn

Jun 5th, 2014 2:09am

I am 30 and I sustained a severe TBI as a passenger in a car accident on December 30, 1998. One thing I want to talk about that I haven't seen put on here yet is the statement, "You've changed," or "You're not the same as you used to be," are some of the most disrespectful, damaging things that could ever be iterated to a person with a TBI. 

For the longest time, I heard those words come from someone in my immediate family every day. They have no idea how much that hurt me. I did not develop depression after my accident, but it made me think that I was less important than I used to be in people's eyes.

I am aware that my personality has changed. Many relationships have been affected, including loved ones, especially my mother. Some family members even said during a discussion with me, "I wish you'd have died in that car accident". In some ways, I feel that I did. 

Although this tragic event happened, I am the only person to graduate (or go to) college, I have a wife and kids, as well as am the most successful person ever in my family. That being said, it feels like I would be more prized to the people who are supposed to be most important to me. 

Tonight, my mother started to talk about me(my injury) like I wasn't even sitting beside her, as she usually does when we talk about that. I started talking to her and told her that she did not have the right to talk about me in that manner, because of her lack of understanding. I mentioned that she only "knew" someone who had a brain injury rather than "understand" it because she doesn't have to wake up with a TBI every day.

Was I wrong? I don't think so. To me, it's like me saying, " I am the only one who's allowed to beat my brother up," because he's MY brother. I am the only one allowed to beat me up over the changes my TBI has brought on, because it's MY TBI.

Yes, while I understand that she witnessed and experienced many hardships during and after my coma, she can only see the picture from one paradigm--from the outside looking in. Thank you for the support.

Jun 1st, 2014 2:40am

I have found myself to have experienced at least 90% of the things in this article, and I can for sure say that it is a challenging road. Nine years since the fact, I'm mostly recovered I'd say, but I think I have lost a ton of potential due to my very high potential prior to the incident.At times I appreciate life quite a bit more, but at times I still get very frustrated. I don't have a lot of friends now, although I did not have a great deal, maybe 6-8 prior, now I have about half as many. I'm glad this article was written.

May 31st, 2014 12:31pm

My TBI is permanent. Yes, I have improved over the years, but I still have a TBI. And no, this isn't a choice, so people, please stop telling me to get over it. Please stop telling me that if I change my thoughts, my TBI will go away, and I'll live happily ever after. Know that I struggle almost every moment of every day. I'm terribly depressed, so please stop telling me to look at all the wonderful things in my life, "how could you possibly be depressed?" I'm grateful for my life, my family and friends. But I'm alone. In addition to a TBI, I suffer with chronic pain, constant, unrelenting pain. I isolate myself so I don't make you feel uncomfortable. What I really need is for you to believe me! I'm not lazy. I'm not stupid. I have problems with my memory. It's useless.

May 28th, 2014 10:11am

HELLO MY NAME IS BRANDI HOOVER

I LIVE IN MORENCI, MICHIGAN.

IN MARCH OF 2012 I STARTED A NEW FACTORY JOB IN OHIO. I THOUGH I NEEDED A CHARGE IN WORK BECAUSE  FOR THE LAST 12 YEAR I WORK IN HEALTH CARE. WELL ANY WAY  I FELT BURNED OUT WORK IN HEALTH CARE. SO I WANTED SOMETHING NEW, DIFFERENT.

THERE WAS A COMPANY IN OHIO THAT WAS HIRING FOR OHIO FACTORYS SO MY HUSBAND AND MY SELF APPLIED AND (NEVER THOUGHT  I WOULD GO THUR WHAT I HAD TO) WE GOT HIRED AT PLACE IN THE NORTH OF OHIO (SORRY CANT GAVE  NAMES) THAT WAS A VERY SMALL FACTORY WITH NO MORE THEN 30 PEOPLE EMPLOYED THERE.

THIS COMPANY NEVER GAVE US ANY SAFE GEAR OR RULE OR IN THING. THEY JUST TREATED  US LIKE  WE BEEN THERE FOR YEARS. AS HE DID THAT I WAS LEANED OVER TO PICK UP A PART TO TRY TO FIGURE OUT WHAT I NEED TO DO.

AS I GOT UP ONE MORNING AT 5:00AM TO START OUR 3RD DAY ON THE JOB.

THEY PLACED ME ON A TAPPER PRESS THAT WAS PLACED AT THE VERY FIRST FRONT OF THE SHOP WHERE I WAS WORKING BY MYSELF EVERY ONE ELSE WAS AT THE BACK OF THE SHOP. LET ME REMINDED YOU I HAVE NEVER RAN ONE BEFORE IN MY LIFE. HE TOOK ME OVER TO IT AND THE SUPPERVIOR  PLACE A PART IN THE PRESS LIKE HE DONE IT A MILLION TIME BEFORE, HE DID IT SO FAST I DIDN’T EVEN SEE WHERE HE PUT IT OR HOW HE EVEN RAN THE PART,  AND WORK AWAY.

NEVER ONCE DID THEY EVER TELL ME TO PULL/TIE  MY HAIR UP OR ANY THING. MY HAIR WAS VERY  LONG PASSED MY BUTT AND I WAS WEARING IT DOWN THAT AT WORK NEED THINK OF WHAT WOULD/COULD HAPPEN.(THE NIGHTMARE FROM HELL)DID HAPPEN TO ME  AS SOME ONE WALKED UP BEHIND ME AND FLIP THE FAN TO ON. THE FAN BLOW MY HAIR RIGHT IN TO THE PRESS AND THE PRESS GRABED MY HAIR SLAMIMG MY HEAD RIGHT IN THE PRESS.AS IT WAS GRABING/RIPPING MORE OF MY HAIR IT WAS SLAMMING MY HEAD EVERYWHERE IT COULD.

IT HAD NO E-STOP SO I HAD NO WAY TO TURN THE MACHINE  OFF OR ANYTHING, AND NO ONE AROUND ME  TO HELP ME. I THOUGHT  I WAS A GONE THAT WAS THE WAY I WAS GOING TO DIE. I TRIED EVERYTHING POSSIBLE  THAT I COULD TO GET FREE BUT IT JUST KEPT SCALPING ME MORE AND MORE ALL I COULD THINK ABOUT WAS MY KIDS AND MY HUSBAND  I WAS I SCREAM AND BEGGED GOD TO LET ME HOLD/KISS MY CHILDREN ONE MORE TIME FOR 7-10 MIN BEFORE ANY ONE EVEN HEARD ME FINALLY THIS 19YEAR KID CAME AND UNPLUG THE PRESS FROM THE WALL 10FT BEHIND THE PRESS.

FINALLY AFTER ABOUT 12 MIN THE SUPERVISOR AND TEAMLEADER CAME TO HELP ME. AFTER THEY GOT ME FREE FROM THE PRESS THE MADE ME GO IN THE OFFICE AND FILL OUT REPORT LET ME REMINDED YOU I WAS SCALP 80% OF MY HEAD BLEED POURING OUT MY HEAD ALL OVER, I COULDNT SEE THE BLOOD WAS IN MY EYES. I WAS IN VERY BAD SHOCK DIDN’T KNOW WHAT I WAS DOING I PROBBLY COULDN’T EVEN TELL YOU MY NAME. ALL I COULD DO WAS BEG THEM TO GET MY HUSBAND BUT THEY TOLD ME I HAD TO GET THE REPORT DONE FIRST. I TOLD THEM I CANT  I NEED MY HUSBAND AND A DOCTOR FAST. SO THEY WENT AND GOT MY HUSBAND AND ALL I COULD SAY TO HIM PLEASE HELP ME THEY ARE HERE TO TAKE ME HOME (HEAVEN) THAT I NEED TO GO WITH THEM NOW (I DON’T REMINBER ANY OF IT) SO HE TOLD THE SUPERVISOR HE NEED TO GET ME TO THE HOSPITAL THEY TOLD HIM NO  THAT  HE NEED  TO GET BACK TO WORK. WE NEED TO MONEY WE HAVE 3 KIDS AND COULD LOSE THE JOB WE NEED IT TO FEED OUR CHILDREN. HE THOUGHT THEY WOULD CALL 911 AND HE’LL MEET ME THAT AFTER HE GOT HIS  PART RAN, BUT THEY DIDN’T THEY MADE ME DRIVE MYSELF TO A HOSPITAL THAT I NEVER EVEN BEEN TO BEFORE IN MY LIFE AND THEY SAID I REFUSED TO HAVE THEM CALL 911 TO TAKE ME TO THE LOCAL HOSPITAL THAT I WOULD DRIVE MY SELF THERE (REALLY) I COULD EVEN TELL U WHO I WAS, LET LONE  I HAD SO MUCH  BRAIN INJURY  I COULDN’T EVEN SAY MORE THEM 2WORDS AT A TIME.

BUT I DROVE MY SELF TO A HOSPITAL THAT I HAD NO CLUE WHERE  IT WAS OR HOW  I  EVEN GOT THERE  BUT I  HAD SOME ANGLES THAT SHOW ME THE WAY I GUESS  (IT THE ONLY WAY I COULD THINK HOW I GOT TO THE HOSPITAL THAT MORNING) AS I AM DRIVING MYSELF THERE THEY  GO BACK AND TELL MY HUSBAND I REFUSED AND TOOK OFF FOR THE HOSPITAL  MYSELF. THEN HE  LIKE DON’T WORRY I HAD THE TEAM LEADER FOLLOW HER THERE. MY HUSBAND LIKE UR JOKE RIGHT AND HE LIKE NO WHY WOULD I EVEN JOKE ABOUT THAT. MY HUSBAND BLOW UP TELLING HIM YOU LET HER DRIVE HER SELF THERE HE LIKE SHE REFUSED. NEEDLESS TO SAY MY HUSBAND TOOK OFF WALKING TO THE HOSPITAL BECAUSE I HAD THE CAR.

ANYWAY LONG STORY SHORT I SUFFERED WITH

SCALP LACERATION, 80%  HAIR AVULSION, CLOSED HEAD INJURY, POSTTRAUMATIC STRESS DIS, MAYOR DEPRESSION, MAJORS HEADACHES ( I DON’T THINK A MAJOR HEADACH EXPLAINS OR EVEN COMES ANY WHERE CLOSE TO WHAT I GO THUR ON A DAILY BASIC AS I LIKE TO CALL THEM MAJOR BRAIN PAIN) THAT I FEEL ON A DAILY BASIC,NECK PAIN THE JUST ACHES. I CANT GET OUT BED FOR DAYS, ALL I DO IS CRY, YELL,THROW THING. I CANT HELP IT I PRAY TO GOD EVER DAY TO TAKE ME HOME EVER MORNING THAT I OPEN MY EYE, I DON’T WANT TO LIVE ANYMORE I CANT TAKE THE FLASHBACK,PAIN,NIGHTMARE I COULD GO ON AND ON BUT I WONT.

I NEED HELP!!!!!!!!. I FEEL LIKE NOONE WILL HELP ME, I HAVE NO WHERE TO TURN ANYMORE. NOONE UNDERSTAND I FEEL LIKE EVERY THINKS I AM A NUT JOB I HAVE LOST IT. ALL MY FAMILY TURNED THERE BACKS ON ME WHEN I NEED THEM THE MOST I ALL WAY THOUGHT WE HAD THE CLOSE FAMILY EVER. (NOT NO MORE THEY HAVE TALK TO ME SEEN THE INJURY) THEY THINK I HAVE LOST IT. MY HUSBAND CANT WORK BECAUSE I AM ALL TRY TO FIND WAY TO HURT/KILL MYSELF OR SCARED I BURN THE HOUSE DOWN BECAUSE I TRY TO COOK BUT WALK WAY AND WITH ME FORGETTING WHAT I AM DOING I FORGET ABOUT THE FOOD THAT I COOKING (I  CAUGHT  KITCHEN ON FIRE 3 TIME NOW) IT HAS ENDED US HOMELESS 3 TIME NOW SINCE THE INJURY I GET A WORKER COMP BUT I SEEM LIKE THEY SEND ME MY CHECK WHEN THEY WANT SO I CANT COUNT A DAY THAT ILL GET ON. I AM IN REALLY IN NEED OF HELP IS THERE ANYONE THAT CAN TELL ME HOW I CAN GET SOME SUPPORT,HELP,ASSISTANCE, IF THERE IS ANY THING OUT THERE LIKE THAT

bobandbrandih@gmail.com

May 27th, 2014 4:07am

Hi i have injury from when i was 4or 5 im 35 i don't know much about my frontal lobe injury but i sure can feel my thinking stops and cant get passed it.what i just read was allmost bang on. One sec lost thought........ Enyway i forget what else i was going to put😞

May 23rd, 2014 5:20pm

I suffered TBI 10 yrs ago. I was already disabled from fibromyalgia, chronic fatigue, some immune system issues and had a crazy fall. The impact was so hard, I bounced around like a pinball. Although I don't remember it, I had injuries on several parts of head and broke my neck. I have post spinal fusion failure, lost most sense of taste &smell, it triggered narcolepsy (that's a WHOLE OTHER issue),global cranial ischemia, post spinal fusion failure, bulging, protruding & degenerating discs, arthritis, and lots of inflammation in my spine. Also I suffer from depression, anxiety, aphasia, I am in so much pain I spend close to 90% of my life in bed. It hurts SOOO badly just to hold my head up, I end up crying hysterically in bed for hours. I have these 'spells' when I am up and about where my head will get sharp pain and I lose my hearing and vision and cannot hold my head up and I have to just lay down on the floor - no matter where I am. I have had a HORRIBLE migraine headache (which I never had before the TBI ) for almost 6 months straight now EVERY SINGLE DAY. I HAVE NOT HAD A SECOND WITHOUT PAIN SINCE I REGAINED CONSCIOUSNESS THE DAY OF THE TBI. I am not old, but I no longer have a social life and I used to travel the world and had an extremely exciting and successful career. Now. I don't I don't understand HOW my WONDERFUL fiancé still puts up with me !!!! Bless his beautiful heart! My mom has to take care of me like she did when I was a child, because I can't even fix my own meals most of the time nor can I get myself to the doctor. Stumbling upon this website, after just discovering I've got global ischemia is like a message from God. I feel so so alone. Although they try, no one understands what this is like.

May 23rd, 2014 5:56am

I just hope to be me again.

May 22nd, 2014 1:30pm

I've had 8 brain surgeries from a ruptured aneurysm and I can say very one of these is true!!

May 13th, 2014 7:04pm

I am a 12 year survivor, at least 2 to 3 years after 90% of this article was true. Now the only problem I have is headaches, but no limitations.. We are all different in how severe our anuerysm was, and how our bodies and mind were affected. I am now doing well, but the first few years were very difficult and a constant struggle. It will get better, have patience  with yourself, and keep moving forward. You survived for a Reason....

May 13th, 2014 6:41pm

Hello again: I have lived with mine for 'going on 38yrs', and in 1977 it was basically UNHEARD OF to survive what I went through, or so I am told. I made the best of a 32day coma after a head-on collission and have made a few observations along the way about how to deal with one of these. DO NOT GET TOO HOT FOR TOO LONG, that is not good. A wet rag on back of the neck works well in keeping you cool

May 10th, 2014 10:31pm

Thankyou for this list! could I add one.

Please try to have my back and support me when my limitations are embarrassing. DON'T LET ME WALK AROUND ALL DAY WITH MY FLY UNDONE. When I have a blank look at the person who has just walked up to me please use their name in a sentence, in case I can't recall it. If you see me struggling to carry a plate of food through a crowded room I probably would appreciate an offer of assistance.When you set up a buffet table leave spaces whereI can set down my plate while I fill it. It is often difficult to carry a plate with one hand while filling it with the other.

May 6th, 2014 11:26pm

I'm a TBI survivor of 4 years and I'm 25 years old and i wanted to tell parents out there with a child with a brain injury is give them space and listen to how there feeling. I know its hard to understand what there going through, they have to learn how to live again and its hard. My biggest advise would be is knowing when to push and moviate and when to back off and just let them be and have space to breathe.  

May 3rd, 2014 4:03pm

My Son suffers with all these things daily! People have no idea unless they've experienced it 1st hand. We continue to encourage and support him! He truly is our Hero!

May 1st, 2014 8:17am

I have never read something so true, I can relate to most of them.

Apr 30th, 2014 3:36pm

I hit my head/snapped neck with force then snapped neck again a short time later. Migraines started, then memory loss, then no capacity for stress and ?depression? (didn't seem like depression). Lost recall of the TBIan it wasn't until the head injury was identified two+ years in, that any tests were done. MRI showed some brain damage. The medical community needs to run these tests immediately rather than prescribing meds and sending people on their way.

Apr 19th, 2014 8:55am

I had a TBI 5 months ago and am a survivor.  After reading this, I had tears in my eyes because I keep trying the best I can and people don't understand. I am 17 and recovering. It is long and hard. I want to be who I used to be. I am such a different person now.  it is so difficult to accept this. I try to forget about my injury but I am reminded everyday of it. How do you get through this and be the person you want to be? I love this and am glad that survivors are sharing their stories because I now know I am not alone in this difficult journey of recovery!

Apr 17th, 2014 12:05am

I broke my Head in 2012 and got a TBI. Almost 6 months later I was tired of being tired and had to try a go back to work. So I did and things went ok for a few months, then I fell off a ladder and had 2 more surgeries. Now this day/today I still push myself and have just realized I am only setting myself back. I still need to heal. If you are like me you are not the type whom likes doctors, boredom, or feeling lazy, so you try and push forward way to hard... well don't, because you are only going to en up hurting yourself in other ways.

                                                                   JLB    2014

Apr 15th, 2014 11:26am

This article is great!  I suffered a closed head injury about 30 years ago.  I have no memory of my accident or 6 months before or 6 months afterward.  But I can relate with every thing in this article.  There is so much still, to be learned about the amazing brain.  I look forward to reading more of this in the future.

Apr 8th, 2014 6:46pm

This is awesome. Like someone in the chat mentioned, this should be a discharge requirement that comes with all TBI patients. All of you can probably understand what it feels like to not be understood, especially by family. Someone not understanding these things, especially while you are recovering, keeps you from understanding yourself. Thank you for your post.

Apr 7th, 2014 2:14am

For the commenter below:  I had a TBI two years ago.  I lost my sense of smell, and it has not returned.  My doctor told me that it if wasn't back after six months, the odds are strong that it would never return.  Loss of smell is common with TBIs.

My guess is that, if you are like me, you can still taste things but the sense is much weakened.  That's because the sense of smell heavily influences what we taste.  Without smell, I can still taste a few stronger things (like spices and mint) but most things have no flavor.  Food enjoyment is mostly about texture.

Apr 4th, 2014 4:44pm

I just have to say thank you for this. It took me a year to realize something was wrong with me (after two car accidents within two weeks of each other)...getting fired for the first time and plummeting from a 4.0 in my Master degree to failing didn't seem to do it. Once I did the real struggle started...trying to pinpoint what is going on with me and my challenges. I research when I can't explain to others my challenges. I am so glad I found this, as I will share with family. Aside from me struggling to figure out what was wrong the next challenges was abc continues to be friends and family...because I "look fine and seem fine" in simple conversations. What I say to that person is that someone with my former career, continuing education as a future doctoral student and financial security doesn't just decide one day to throw it all away for no reason. To file bankruptcy. To lose my home in foreclosure. To lose my Master's degree (I had one class left) and my acceptance into a doctoral program. This hopefully will help family understand further. Thank you so much.

Apr 2nd, 2014 2:28pm

Eight years and a few months ago I had my skull screwed back together after the removal of a GBM. They got it all and it hasn't recurred, bucking all the odds and making me a medical miracle. That's great, but the combination of standard of care leaves patients with a new and different existence. Behavioral modification and cognitive impairment are expected from any brain surgery, and most TBIs. I can only surmise that my improved functioning is a product of my continuous stimulating of my endocannabinoid system, and also includes neuro protective and neuro genetic qualities. I'm still doing the PA at high school basketball games, memorizing names as I call the action. That miraculous plant has been falsely demonized our entire lives and recognizing when you're wrong is a difficult task, but cannabis and humans have a bond that is unmistakable if you're willing to look into it with an open mind.

Mar 30th, 2014 5:27pm

I am totally there with all of the above issues,and working on all of them..I am also experiencing others wanting and thinking I can recover faster. Even my close family and friends.My family physician even states I can get better faster :(

Mar 25th, 2014 12:20pm

My nephew had a TBI in 2002. he lost his sense of smell and taste. Taste returned in the first year.Sadly, he still has no sense of smell.It's just one example but you asked...pray that you have a better outcome.

Mar 5th, 2014 9:58pm

This is so very true♡ my dad is a survivor and every bit of this describes him. Thank you so much for Sharing♡

Mar 4th, 2014 2:50pm

Hi to all. Just wanna know if anybody in this forum who had TBI and lost their sense of smell and sense of taste??? Did you get them back? What treatment did you get? Please let me know. I had TBI 6 months ago and I'm still waiting for my senses to get back. My doctors don't have any clue and don't offer any hope.

Mar 2nd, 2014 7:54pm

I suffered a ischemic stroke to the right frontal lobe.  I was in denial that there was anything wrong when it happened, other than being in a state of confusion for almost 4 days before going to the hospital.  Everyone said it was stress.  The hospital said it was a brain tumor and sent me on my way.  I am a year and 3 months out and just started working again.  I am not sure how it will work out as the only job I could find is in a warehouse and they expect me to meet the standard for someone who has all their brain working.  I still have periods of confusion and have to stop and figure out where I am which impacts my ability to perform.  I also find crowds to be annoying and my temper is very short.  I am not able to keep friends and find my attitude has taken on a " who cares" sort of perspective.  My husband does not understand what has happened and believes there is demon inside of me.  It is very frustrating and feel very alone when part of your brain ceases to work.  The only positive in my life is my horse who loves me just the way I am.

Mar 1st, 2014 11:34pm

18 years now for me and still struggling with people who misunderstand

Mar 1st, 2014 10:52pm

My TBI was 8 yrs ago - run over by a drunk driver at the airport.  

Your comments have made me feel like I am not alone.  I will never meet you nor speak to you but you have probably saved me.

I lost me - I know I lost me and I want ME back!  Before the accident, picture your stereotypical sorority girl - but nice :-) - doing volunteer work at the orphanage, working full time, organizing campus wide fund raiser, and more and still pulling down a 3.8 in college (engineering).  I was everyone's friend because I LOVED people.  I loved being around them, I loved talking to strangers and hearing their life stories and learning lessons to use in my own.  I hugged everyone!  You either loved me or hated me because I was that annoying perky happy person but at least I tempered it with a very sarcastic sense of humor.

Fast forward to marriage and kids.  Still worked 60 - 70 hours a week (global team so all hours of the night and day), was homeroom mom for two kids, GS leader for two troops, GS Council, basketball team mom, soccer team mom,  and more all at the time of the accident.  And then, because some drunk decided to drive - in reverse - and drag me 18 ft, it was all over.

For six months, I couldn't sleep in any position but sitting up in a recliner due to the various injuries.  But more importantly, I couldn't stand for anyone to touch me, even my kids.  At first, I thought it was from the pain (broken ribs) but it got worse.  I couldn't remember anything and I just wanted everyone to go away and leave me alone.

I was diagnosed finally and took all the tests.  My short term memory is really bad.  I have lost entire chunks of my life - I don't remember my children's first steps or first words.  They will say "remember when we.... " and I have to just smile because I haven't a clue what they are talking about.

And people... oh, I don't like people in person.  I can still talk to you on the internet and thank God that I am "home office" so that I can continue to work, otherwise, I would be on disability.  I can handle being around friends for maybe an hour and then I have to walk away for a while.  I can't go to Target or a football game unless it is a good day.  I deal better "in crowds" than I do say Parent Sports team meetings because I have to deal one on one and they still want me to organize everything or be perky and I JUST CAN'T DO IT.

My husband was supportive for the first several years but now thinks I am faking it.  The latest round of medication for my migraines and other drugs has helped me to gain 40 lbs.  The shots for my permanently damaged knee have basically stopped working and I can't sleep or get comfortable from the pain.

He has started to call me stupid and make comments like "you really are brain damaged, aren't you?" in a vicious manner.  I can never do enough to make people happy and I can't be who I was and want to be again.  He says I am a fat, disgusting crazy idiot.  Happy 25th anniversary honey - you should be committed!

We/I bought a farm last year - 30 acres in the middle of nowhere - 12 hrs from our main house.  It was "his idea" although now he resents if I go there but all I want to do is just run away.  Stay at my farm and not see people.  Live without stress, but I can't because of my children.

I AM NOT STUPID!  I AM NOT CRAZY! AND I WANT ME BACK!

And if I can't have the old me, then I want to be left alone so that can find peace with the "new me" because apparently, we are going to be stuck with each other for the rest of our lives...

ps... sorry I ranted but I feel so alone...

Mar 1st, 2014 10:49pm

This sums things up so well, I just really wish I could get others around me to understand also.

Mar 1st, 2014 4:38pm

Wow, I just stared directly into the mirror it seems for the first time in 12 years almost to the day. You hit the nail on head. OMG, I cannot UNread this to avoid the reality of it, it's just so overwhelming. How can I say I've made it this far? I simply can't run away from myself, so, so far, I guess my future will present itself. It just depends on "where I stand in governments hands" for where it is I will wind up. Got "in line" for housing years ago... "my future is in general population line up."

Feb 24th, 2014 2:55pm

There is hope for those of you with mild to moderate brain injuries.  New science has emerged on the ability to use quantitative EEG technologies to pinpoint the areas of dysfunction in the brain, and to retrain them using Neurofeedback - see article for more information:

http://www.internationalbrain.org/articles/neurofeedback-treatment-for-traumatic-brain-injury/

Don't give up, and don't lose hope.  Continue to seek help to fully recover!

Feb 20th, 2014 11:40am

I accidentally come across this site and couldn't belieave how right on this site is.  I am the mom of a 16 year old daughter who has a tbi. She had a horse back riding accident 3 years ago and is really struggling.  She is on meds for depression, and anxiety of all kinds.  It seems like we are taking her to the doctor all the time, always says she is sick and most of the time they do find something wrong with her mostly this year sinus infections.  Anyways this isn't easy alot of people don't understand brain injuries.  She is the first one they have seen that was this bad.  Oh, at first they did everything they could for her academically from getting her a tutor to just about anything, well now it's been 3 years and they think she has healed.   She is on an I.E.P. , if she misses so many school days in a quarter they make her type reports, that's all she needs more more to do when she can't hardly finish her home work.  Even her many doctor appointments count againt her.  My husband and i have gone to meeting upon meetings trying to talk them into puting it into her I.E.P. that because of her disability and needing these doctors appointments it shouldn't count against her, well they cut the reports in half but it's still a struggle and they will not do as we ask.  Acouple of years ago my daughter had a break down at the school and she ended up in a childrens mental hospital for 2 weeks. I do realize i don't push her enough worried she will fall apart again but i am not sure how much i can push her without this happening.  She can go to school for so many days then she says she is sick or her head hurts so i call the school and try to explain but they don't get it.  Sometimes i don't get it!  The doctor at the Psychiatric hospital told my husband and I that the child that got hurt that day is never going to be the same, like that person died and now she is trying to find the new person.

Thank you for listening.....

Feb 20th, 2014 11:27am

Another one is that if the survivor is a person of faith, his or her recognition that he or she will not be the same again is not a lack of faith but acceptance.

Feb 18th, 2014 12:55pm

Just like so many others have said, this is spot on for TBI survivors.  I am 13.5 years out and still trying too hard and making myself ill.  So it's a great reminder to myself that although I have always just wanted my life back it is not as simple as that.  Thank you for this fabulous article.

Feb 18th, 2014 5:24am

I am everything this article talks about...but yet it seems no one understands and then I feel alone in this trauma and confused???

Feb 18th, 2014 3:48am

This is a wonderful piece of information to pass along to family and friends. I suffered a traumatic brain injury in 2003 as a result of an automobile accident. The accident was catastrophic and I was in a coma for 6 days. 11 years later I am doing well but suffer everyday living with a brain injury. What was mentioned in this article I experience most of the time. Trying to explain it to people who don't get it is very hard. Thank heavens for websites like this. Your are a blessing.

Feb 17th, 2014 8:26pm

Are there any video suggestions that I could show at my support group around this topic ?

Feb 17th, 2014 1:12pm

All I can ask is, "Will I ever be the same?"  The guilt, the shame and as the source of constant disappointment to everyone who knows--or knew--me is relentless, Three years already, and it's still just shadows, cinders of a person I once used to know. God, I am so tired...

Feb 12th, 2014 7:30pm

My son was severely injured in Iraq and lost both legs above the knee by IED blast. We had a local doctor donate 80 hyperbaric treatments to heal his brain and it worked! He takes no medications at all and we literally got our son back!

Jan 26th, 2014 4:52pm

What a windfall to find this forum.

I experienced a subdural hemmorage in my right frontal lobe 6 years ago. I underwent brain surgery where they evacuated the bleed and clipped the blood vessel. I have had seizure disorder since then. I underwent several life changing events within this period of my life, in the following order; pre-surgery, father died, lost me CEO job and I contracted bacterial endo-carditis. I had an aortic heart valve replacement then the brain anuerysm surgery 2 weeks later. My 1st valve operation failed 4 months post-brain surgery. My wife met another man and filed for divorce, serving me papers the Friday before the Monday surgery. I went through 3 years of talk therapy and my divorce property preceedings took 3 years to finish. I spent $200k of my retirement savings to pay legal and medical bills. I am writing this down to explain my dilemna with my brain functioning, since the brain surgery.

I cannot express these negative emotions of deep sadness with crying. I find they are bottled up inside and none of the therapy I received changed this ability to relieve the pain of the extended trauma, 6 years later. I do have joint custody of my two young boys(7&9) and received most of my pre-marriage assets back. There is a silver-lining to this TBI and that is that this condition of "muted" emotions saved me from suicide and homicide immediately after release from the rehab. I do harbor hatred yoward my ex and many people who don't understand TBI, say "forgive and forget", a decision my brain won't allow me to do. After my discharge from rehab, I had my boys and I met a new love partner(my current wife). The downside of this brain injury was that I was disabled (judged so by neuropsychologists for cognitive function) and could not find work in my field. Being in a small industry, the word of my heart and brain surgery spread quickly and some people thought I had actually died. The ones who knew I had survived were skeptical of my remaining faculties. I was stygmatized due to my health problems, long past. I won't feel completely healed until these negative emotions and release of sadness occurs.

During my time on disability, I started my own company and was prospecting for financing, which has not happened, as yet. Due to financial needs, I have been applying for work in industry that is related to my previous industry. I will decide on the future of the company if/when i get a job offer that I want to accept. I have two opportunities currently presenting themselves that may land me a well paid job in the next month without being required to relocate away from my children.

I don't believe I am limited in my cognitive abilities, as evidenced by my development of this new company. I do get mentallly tired easier, but do not haveoutward symptoms described in the various forums or medical websites I have visited.

Jan 25th, 2014 5:52pm

I had a craniotomy in 2010 to remove 2 meningiomas.  Because of the surgery I lost most of the sight in one eye, have momentary lapses in awareness, have difficulty in situations where there are a lot of people or a lot of stimulus - it seems like I can't process all the information.  Also, after being in those situations I get migraine headaches and am taking Zoloft for depression. Just went to a psychiatrist for cognitive testing and it's his opinion that I have an anxiety problem and should just force myself to put myself in situations that are overwhelming to me.  It's making me feel even worse about myself and that I'm a burden on my family.  I'm very grateful that I just found this site so I don't feel like I'm all alone and it's not all in my head, so to speak. Thank you. KM

Jan 24th, 2014 2:21pm

Does anyone have information on the long term effects and PROS and CONS of using PEEK Cranial Implants?

Jan 17th, 2014 10:02am

I'm a brain cancer survivour. We didn't find out about it until my tumour had hemorrhaged. We didn't even know it was a tumour; it was diagnosed as a cyst before the hemorrhage. After surgery, radiation, and chemo, I couldn't explain how everything was. Everything was caged in. Even doctors didn't understand why I couldn't say how I felt. This makes complete sense, and describes everything that I go through now. Without that 10th of my brain, it will remain this way.

Jan 16th, 2014 6:49pm

Thanks, I am tbi and suffer from seizures for over 20 yrs. now.   Main thing I hear is why do you lay around in afternoon or get sick so much. I try to ignore what people think, but it reallyhas  bothers me over the years.

Jan 14th, 2014 1:27pm

Amen to this...... This is exactly how I feel.

Jan 8th, 2014 9:46pm

7 months ago I fell. TBI diagnosed with ADHD also discovered. I am not, nor expect myself ever, going to be the same.

Jan 8th, 2014 11:17am

I want to print this and give it to family & friends...my symptoms are NOT my imagination....wishing everyone understood is....

Jan 8th, 2014 7:55am

I'm glad to read this.  It reminds me to give myself a break.  I'm very very hard on myself. . But I can't remember which way to turn to get from the grocery store to my friend's house. (Yes I've passed my driving test since my injury.). People think I'm lazy because I am on disability.  I don't remember anything I read.  It's depressing as hell. 

Jan 6th, 2014 8:54pm

Thank you, from all of us with Chiari Malformation and Intracranial Hypertension.

Jan 6th, 2014 3:59pm

After a month long state of severe headaches and a clean cat scan which should have been done with contrast, my cerebral venous sinus thrombosis caused Sagittal sinus to burst do to a clot. At 33 always exercising and eating healthy not smoking this is what happened. Somehow I survived it and appear to be ok physically. I just suffer from soreness and my stamina isn't the same. I never got tired or sore from the gym. Now it kicks my butt. 

Jan 5th, 2014 4:14pm

I just found this site today and I'm learning so much.  I had a TBI when I was 10 and have a plate over my right frontal lobe.  That was 50 years ago and the only thing I know about my injury is that my parents were told that I was retarded but they weren't sure to what degree and that I would have epileptic seizures.  I almost died and had bone fragments and shale rock embedded in my brain.  I was very different after and told my mom that something was wrong, something was different and something was missing.  I couldn't control my emotions but she wouldn't talk to me about it.  I have fumbled through life without having any help whatsoever and have managed to alienate 2 husbands and my 3 daughters who I love very much.  They won't have anything to do with me.  I have been struggling to try to save my relationship with them and everything I did was wrong. I've never discussed my brain injury with them until lately and they think it is a bid for sympathy and was the final straw for them.  Finally I am going to seek help.  Thank you for this site.

Dec 29th, 2013 2:07pm

I am not Faking it!!!!

Dec 19th, 2013 11:49am

These hit home with me, I'm really thinking of posting this on my dorm room door. I cracked my head open the senior year of high school and got a concussion, since then I've had multiple head injuries and a month ago sustained another concussion. I'm a college student, and I had been doing better cognitively but after the last concussion it's like I'm back at square one. We are having to retrain my brain for everything, and it is beyond frustrating to wake up each day and have people judge me for not being able to "be normal". It's kinda comforting to know there are others going through the same kind of thing.

Dec 18th, 2013 12:31am

I am so glad to have found this site. I suffered an anoxic brain injury when I was 19. My personality changed. I wasn't diagnosed with a TBI for over a year. I was fortunate to have had therapy and been shown some useful tools to help me with my everyday life.

Dec 15th, 2013 4:53pm

I am a 31 year survivor of severe TBI, thank you~

Dec 12th, 2013 11:57am

Wow, I am so grateful to have found this website!! I have been doing so much research after I got hurt. I had 2 concussions within about 3 weeks of each other in the late summer and early fall. One severe one to the front of my eye/head and a mild one to the back of my head. A lot of my symptoms were pretty delayed, not presenting themselves for weeks after I got hurt. Now I struggle with all my symptoms and I have recently developed odd  pressure and a stutter. Some of my friends think I'm faking, but I wish I were. I have no control over the stutter and it's inconsistency. My scans show nothing and  I just want to be seen as who I am, I don't want this stupid brain injury to define me, I don't want to be pitied, I just want to be me. This site looks like a huge help, and hopefully will help learn more about my injury. If anyone has any adivce to this exhausted college kid, please feel free, I need all the support I can get these days. ~Robin

Nov 27th, 2013 2:56pm

I found this site today. and it left me in tears. I had a TBI in 1998, I had several significant concussion before playing sports, many falls followed, seizures, constant migraines. My wife divorced me. My friends called a malingerer and left, only my children stayed. Medical treatment was poor until three years ago. For the first three years I could not speak coherently. I still have trouble and live below the poverty line. I am now treated for the migraines and for the seizures but not for the head injury.  This year is the first year, for a whole number of reasons, I have been able to live on my own. I have not know what my future is or what to do.  I am more than glad to have found this site, MORE THAN GLAD!

Nov 26th, 2013 2:25pm

Thank you for the comments ! Its been five years since my wife had her brain tumor removed (we are the lucky ones) THE SURVIVORS !!! Sometimes we can forget ! or just get caught up in the daily grind of life and after all the stressful situations we faced as a family, We can forget that we are very lucky to get through this very tricky stressful time of life These are life and death situations (There's no instruction manual to follow) Just survival mode I know my wife now suffers from pain (i admire her determination) We are all picking up the pieces and trying to get back to that place we once called normality Be positive and you will find a good place The weekly Neuro physio Trips have and still are very helpful (Thank you Nikki x) i suggest anyone who has has surgery find one of these amazing physio's, They can help Also find a Doctor who deals with pain (if required) The British Pain Society Reading some of the stories (not all as i am probably the most impatient man on the planet) has given me a new insight in the way my wife feels i am sitting here writing this feeling very selfish, as i have been given a gift of keeping my wife alive, and all i have been doing the past few days is getting grumpy and feeling lonely due to the fact she needs her rest and the situation that has landed upon us (I am am truly sorry ) We have just moved house and for a person who has not dealt with TBI that can be stressful enough ! She is the most amazing strongest person i have ever met and i love her deeply Now i need to remind myself, that even after five years she will continue to need the patience and support required for a TBI survivor (i will find this patience from somewhere) She is my everything and i would be lost without her xxx For my wife Keely x

Nov 17th, 2013 4:53am

I received a TBI 13 years ago. I was a single mom. Everyone and everything I knew to be real was history. Even my own children left me to fend for myself in this ugly, ugly, world. I have no memory & no sense of time. Can't tell you about the births of my children, or even my grandchildren. Recently, w/o any eviction notice, 3 women dragged every memory I owned onto the curb where passersby, & the women themselves kept whatever they wanted - I was in the hospital, no one called to let me know. My only friends are three other disabled people...they were physically assaulted for trying to help me do what I have never been able to do since that car accident robbed me of my life. Because the 3 of us who have brain damage spoke irraticly, events out of order, one FTW officer said to me, "well, if you are brain-injured, how did you just use that legal term?" lol The mother of the other two mentally handicapped friends wanted to file assault charges because the aggressive, non brain-injured party, was only given the lightest misdemeanor (a ticket), I tried to help by calling the detective handling the matter and even his Sgt. superior. The mom was told that I must not be a very good friend to have dragged then into this case. Evidently, we all have different abilities and disabilities. They suggested the charge of "perjury," for lying for me! The Sgt. told me I was "like a spoiled kid throwing a tantrum, holding my breath till I was red in the face, but they still weren't going to give me my "way." So, for wanting justice for the assault on my 2 friends who are mentally disabled as I am, The most I got out of the attempt was another verbal beat-down by the law enforcement that constantly tell us to call them if we need help...lol. I can just imagine how this will go over in court if I don't get a very sympathetic lawyer real soon!

Nov 16th, 2013 5:29pm

I'd love to know if anyone on this site has suffered a brain injury and completely divorced themselves from the family who loves them. My niece is recovering from a brain injury and has chosen to remove me from her existence. It breaks my heart each and every day and I am trying to better understand why and to remain openhearted to her needs. The pain for me is that she allows others into her life yet not me, the Aunt who loves her so very much. Your insights are very much appreciated.

Nov 9th, 2013 12:51pm

Great article! It is obvious that many of us connect with the symptoms and find relief that others are or have experienced what we have or are having. But more than that, this site brings all of us together with a common bond of losing what we once knew and struggling to understand or accept who we are today. It I has been six years since my TBI and I still struggle with living in the new "me". Yes, anger, exhaustion, confusion, fear, loneliness, all those things I still struggle with. I describe it as living life one step behind the rest of the world. Or having a dimmer switch turned down to low. I was an active, fun loving person, ran my own business and raised three great kids. Now I struggle to cook, clean or go shopping. I do not drive, and I am dependent on my loved ones to take me to the places I once freely took myself to. I have lost my social filter and often say inappropriate things at really inappropriate times or places. I cannot stay in a store where too many things and people are talking and moving about. Too much light, too much sound, too much motion. My heart was turned off. I have little emotion, or feelings of personal connection to people or such. It is a very empty feeling. I truly miss me.

Nov 5th, 2013 7:45pm

You know, Ive had TBI problems and concerns that I feel that NO ONE understands. Even me. I even had a stroke because of one of the surgeries, its hard to even try to try. But after finding this article. I no longer feel alone. And now, all those 'petty' 'laziness issues' and 'lack of will power' is finally explained by this article. I am very thankful for this post. And wish my fellow SURVIVORS of TBI the best of luck. We've all made it this far….there is no point in giving up!

Nov 4th, 2013 1:21pm

Loved this article, very helpful reminders to share because some brain injury survivors have trouble communicating but definitely deserve to be heard like everyone else!

Nov 3rd, 2013 10:20pm

I also was discharged from the trauma center and all my papers said was when my next appts. were with the trauma doctors. It'll be 10 years in Feb. and I'd give anything to talk with someone that actually understood the intensity of loss of ME I feel and how frustrating and scary too life is now. Im so tired. So blah. So insecure because of the cognitive losses and almost complete inability to form long term memories. And I rock a lot. It's awful. I've hsd panic attacks for first time and my claustraphobia is worse. I'm alone 90 to 95%!!!! I'm lonely now.

Oct 31st, 2013 12:19am

I echo a lot of things already said. I wish so badly the hospital or rehab center had sent me home with information like this. I need to contact them and find out why and tell them that they need to provide TBI patients this kind of information (and a lot more) when they leave the hospital! I went through so many thing like this in the first years after my TBI and had no idea what was happening to me. This is clear and simple. Thank you for the information.

Oct 28th, 2013 10:15pm

Hi This is James again..the long story below..!! Just a little update and what it is like to live with this condition 10 years later and well into working with it. I have not been able to work at my bench jewelry projects for about three weeks now..I also had to deal with anxiety attacks to the point that even my breathing was affected. Felt inside of myself that I was just going to explode emotionally. I could not get a handle on this condition...I have never felt anxiety before...I of course did not sleep well the past three weeks and got little very much needed work done. I did hide these emotions inside myself and kept the world from knowing.. I did finally get through to my wife about TBI..we had a fight and when I said I had TBI..she laughed and said No way.!! you had a little mental breakdown.. Well I was ready for that statement this time and challenged her since she knew to just go on the internet and compare TBI with a break down and get back to me. She came back to me and had to admit I was correct and was sorry for how she has treated me all these years. She finally gets it about my condition..she did some research and thanks to this site as well as another site and all the information today to pull from all over the internet. She still does not understand what I deal with, but at least is trying..I copied the page here on what NOT to say to a TBI survivor and some other info here. The information since the Afghanistan war bomb survivors and some sports stars have come forward to help educate the public has increased over the years to what we have today. I guess I have been pushing myself to hard again and broke down..I label it a melt down. The mind is so similar to the computer..it also crashes,boot ups,slow response times, Re-boot and so on.. I use the computer to link to..to be able to explain myself and how I work.. Keep your chin up and work beyond the current challenge as I do. Wish there was an easy fix answer..There is not..!! But I hope you have compassionate and understanding friends and family. That has been my greatest challenge. James

Oct 24th, 2013 4:24am

While the accident that caused it was never a major one, I have had a number of concussions before which lead to it being worse than what it was. I was absolutely fine shortly after the accident and didnt have any trouble getting back to work (slight car accident on my lunch break). And even getting back to home after work as well being dropped off from a workmate. There was something up that night, I could just feel it, the following morning it was hard enough to say that I was okay yet alone when my flatmate asked if they should make me a cup of coffee as well. Almost breaking into tears at the inability to explain myself to them, my mouth moving around as though eventually words would come out even though eventually nothing. Its one of the most humbling experiences where it felt as though I had to start from scratch. After going to the doctor and having numerous tests and profiles completed it was around 6 months before a part time return to work (after much worry and anxiety on my part as to if I could even do the work any more, when you notice that you cant do simple things at home you doubt whether you can go back to work). To me the best thing was getting back to work and starting to find another way of doing things and make the effort to relate things to each other. Sometimes the most frustrating things are the simplest where it may of taken you 2 seconds to calculate something now takes 20 or 30 seconds *went from the 81st to 72nd percentile in math/abstract reasoning tests before and after the accident* It takes time, stick it out and it will get better. You will get there :)

Oct 18th, 2013 11:06am

This is the best info for caregivers, family and friends to understand how TBI from a meningioma resection affects a person! Thank you!

Oct 14th, 2013 11:50pm

Wow!! This is "me." You have described me in detail. I am a brain tumor survivor and this is my life now. Don't get me wrong. I love my life and I am very happy. I work hard to be healthy and try not to take anything for granted, but whoever wrote this understands "me." This is how it is for people that have survived brain tumors, and brain injuries. Thank you for putting it into words.

Oct 14th, 2013 5:00pm

My wife of 28 years is a TBI survivor. Her accident was 25 years ago. This article is important. This site is important. Every. Single. Word. of this could not be more true. Even after all this time this is still helpful to us both. I didn't get much of this for the longest time. The information simply wasn't available. If anyone has any doubts about this please ask us. Please ask someone. At least in our case there was no silver bullet drug or treatment. Time. Patience. And hope. My wife Su has written a book that will be published on Feb 4, 2014. She wrote it, and had it published to get the word out. So people don't have to go through this stuff alone and in ignorance of what is happening inside a survivor's head. Inside her family. Inside her life. For my part please all take care. This is some of the hardest stuff you will ever do. But don't lose hope. It is important too. We will both help if we can. "I forgot to remember" Su wrote it not so much to tell her story, but so no one would ever have to feel alone with TBI like she did for all those years. She is the bravest and strongest person and woman I have ever met. And this describes our world to a T. Because survivors really want and need us to know this stuff. And we really need to listen and get it. Thank you for this and everyone's comments. Jim

Oct 11th, 2013 9:34pm

my god the nhs should hand this out as a leaflet to get friends and family to understand. I'm very much like this 18 months after brain surgery

Oct 4th, 2013 10:28am

Hi I just want 2 know how u cope cuz I have head pain lazyness brain don't swich off and I talk bad it feels some time am mad lost balance walking not the sAme guy I was and lost caring for people and loving them and feel emty inside like am alone no family no friend like we not what we were Even pills don't help

Oct 3rd, 2013 6:21am

Hi, I have been having cognitive problems, and chronic headaches for more than a year. This article completely describes me, it's so difficult for me to find the words when writing or talking (even when before my injury I spoke 6 languages). Now that i know this, I may not feel myself so insecure. My brain is most time empty, I had such a great imagination before the injury, and now it's like I can't make images on my head, just memories. And to this I have to add the chronic headaches. I should study, since that was what I was doing before the injury, but I completely misread everything, or forget it. It's so frustrating. Writing like this it feels like if I'm writing in chinese (which I spoke before the injury), I can't help not to note it. Well, that's all.

Oct 2nd, 2013 3:28pm

I read a lot of the stories here and most seemed to have short term problems and a happy ending...Wish my story was the same...My story is written to help the long term survivors or we that have learned to cope with it. About 7-10 years ago I was robbed and beaten and hit in the head by a couple of thugs. At first I had my confusion but seemed fine except for the traumatic event I had just had. I could still talk and function and drive my car. I went to bed that first night and found I could not sleep..I was only thinking of the incident and the trauma of it and had visions of them outside my window with guns pointing at me and waiting to hear a bullet rip into my brain..I wondered what that would feel like and if I would even hear it..I got no sleep that night..I got up and found myself full of wanting a normal day but could already feel it was not going to be that. I got to the kitchen for coffee and was asked the first question of the day, I had no answer as my mind was blank. My legs went limp and I found myself in the floor crying and could not talk. I had several of these events that first day. I told my friends that I was OK and if I could not talk I would hold up my index finger to signal I was OK..For a 45 Year old man with a 170 IQ and in command of his life and business I was totally lost. My brain was empty and Black inside..My Brain was now empty and all the things I worked on inside my brain were gone. I knew my name and I felt I still had memory of who I was, but would soon find out how limited even that was. Here I was on the floor crying and holding up a finger as the only way I could communicate. After an episode I could at a point in time get up and talk again, but my speech was slurred and my vocabulary was very limited. I cried a lot and could not move my mouth to speak with much of my trying to talk effort. My brain would have a thought and when I spoke the thought..it would come out slurred and jumbled. My first day was hell and I was very scared at what condition I was in. Medically I was OK..I had no outward signs of being attached or any injuries one could see other than a few scrapes and bruises on my arms and hands. No outward head injury showed, many day later I would find myself in the emergency Psyche ward. My friends did not know how to help me..!! My second night I went to bed again was the same..no sleep..all I could do was look out the window and imagine the two attackers pointing a gun at me out in the dark. My next 6 days were all the same.same problems and no sleep. Finally on the 6 -7 night I got one hours sleep.my sleep returned over the next few days an hour a night..My days were spent trying to do things but could not. Many things triggered the legs limp and falling in the floor crying. Most were when asked some thing and I could not find it in my brain I would find myself in the floor crying. I hid from everyone and the very few I went out with was difficult. My speech was slurred and I talked like a Retard, excuse the term but that was what my brain told me I sounded like,and did. My short term memory was a few seconds, not even ten. I could have lunch with friends and the next day not remember them or having lunch with them and did not know their names unless very old friends. My former brain had been everything for me.it was who I was. I was a jewelry manufacturer,designer,silver goldsmith,stone cutter and so on. I now was totally dis-functional and could do very little. I could not sit at even my bench and work..I spent two years in a total black hell of a depression life. I wanted to die and to go to bed at night was hell knowing I was going to wake up tomorrow in the same hell. I did not want to see tomorrow and it scared me and was black and horrible. After the two year point roughly I found I could still cut stones.. but I found it was some thing I could do at my pace. I was computer eliterate at the time and with under an hours coaching and with an old $50.00 computer I started selling on eBay. Was very hard to organize my thoughts and answer emails and many many things got me down and I could not cope with them. I would hit a wall mentally and would shut down and rest. The Dr. had diagnosed me as totally dis-functional. I could not live with that and pushed myself to achieve things. At first I could not remember anything. I put a lot of notes around my house. I had a list next to the door at eye level to tell me to turn off the coffee pot, have my wallet,my house and car keys etc. My first job I got to recover with was delivering pizza..I was broke and had to start some where. My notes next to the door even told me I needed my proper dress, which was a cap,my black belt, my black shoes,pen,flashlight ect. I would forget even those simple things. Was very hard for the first couple of months. My notes even had to tell when leaving the parking lot to turn left or right.. I had a map on the wall and wrote delivery notes to get there. This job forced me to deal with people and my memory. I did find after a couple of months I could find places on the map. Turned out to be the best thing I have ever done for myself to recover. Meanwhile I grew my business and retired to full time eBay after over a year of pizza delivery. Now ten years later....... Today I am 10 years or so beyond the incendent and still have many issues. My memory has gotten better, but I still have short term memory problems. I have many problems I have learned to live with. I am a different person than I was. My personality has to still deal with anger. My family has NO compassion for my condition. My family is very short with me and yells at me and I hear all the time. I already told you that why are you asking me again. I state ..if I knew why would I ask again.?? The hardest thing I have had to deal with are dealing with people next to me that should understand my condition. But because it is an unseen condition they do not see it or even want to. I hear so many things that are hard..Why are you so angry..?? I just told you that.?? Gee did you get up on the wrong side of bed again..?? We have already discussed that.?? Why are you bringing that up again.?? What is wrong with you..?? and many more I have found I have to do every thing in an orderly manner. I can not deal with confusion and disorder. There are many things I still cannot deal with. I still find myself tired and need sleep. I label it hitting a wall, but means I have reached a point and can not deal with it any more and need to get away from it and rest my mind..it is a word I use for a project I am working on or any thing I do in life that is a task and gets difficult. Many things I do are in time limits of when I can do them. Some times I can do now or today and other times I can not do the same task and will sit undone for weeks and then all the sudden I can do them. I have found myself every year getting better and I can accomplish more things or I have just learned how to do them with my limited ability or both. I have had to relearn how to do about everything in my life as I do things different now. I have not recovered my large vocabulary I once had. My brain still thinks thoughts and I have to convert the thoughts to words and I feel the execution of that. My brain works today as if I knew another language and had to convert from it to English to talk. I think the thought and search my brain for the words to speak the thought. My brain gives me still today very limited words to work with. This makes me stutter some as I try to find the correct word. The problem is the words I am given are very limited and do a very poor job expressing what I truthfully am trying to say. My brain does not give me the best words or compassionate words, it give me what it does and very hard to work with the words given. And then I get reprimanded or criticized for using the incorrect word. I get accused of being a #*^$ hole and many other bad comments. My limited vocabulary is hard and direct and is not compassionate, which I am. I am forced to talk with this limited vocabulary to express myself with today . Thank God I have a photographic jewelry memory and have that vocabulary. It seems the words I have the hardest time with or try to find, have feeling connected to them and hard to express feelings.. I still find myself linked to many things in a day I almost cry over and have to hold that emotion in myself. I find many emotions and feelings and thoughts that are a battle to keep inside me and not take over and I cry or other response. I still take many naps. I still need rest. I have a hard time sleeping very long. My night's are spent trying to sleep and I lay there awake. Some nights I get a little sleep and others not. My sleep habits are horrible and I sleep in 3-5 hour increments of time. I know I need to sleep regularly for good health but reality is another thing. My mind is hard to shut down at night to get to sleep. That is the short story and the longer one is much worse and much more to it. I am working on a book to inspire people to get beyond this condition .That there is hope and a life beyond this condition once one learns how to deal with it. PS..today I have built my business to over a million net worth and am one of those internet living at home and in my PJ's entrepreneurs ..not that simple But I have pushed myself to show it can be done and I am not done yet. I have only just began. James

Oct 1st, 2013 5:53am

this is really interesting i can relate to huge parts of this, what i am still unsure and friends have pointed out, that i have good days and bad. I never went to hospital with my injury. I am rather confused by it all, and don't know if the issues are just sign of pstd. but know i have been the same since it happened/

Sep 30th, 2013 2:55pm

Thanks for writing this. I am 26 now but my brain injury occured when i was 10. I had encephalitis and seized (part was in a pool) for 4 hours straight. The encephalitis also caused mesial temporal schlerosis. I was put on meds, but eventually got off of them because i thought my seizures had stopped. When i was 16 i started having them in highschool and i was put back on meds...which didnt work. At 17, i had a right temporal lobectomy. Before the surgery i was really shy and quiet. Now, i have pretty much no filters. Its so embarassing..i feel so different. Other than that, i have short term memory issues and a lot of emotional issues as well. Has anyone had this trouble?

Sep 29th, 2013 3:28pm

This has given me so much insight into a new found friend's life. Thank you for being straight forward and practical. This will help me be more understanding and aware of his needs.

Sep 28th, 2013 12:28am

This article is SO accurate. I wound up in ICU for two weeks and sustained coma, skull fractures and open-head surgery after a crazy freak accident when I was 15. My life dramatically changed and it was a bumpy, long recovery; however, nine years later, here I am after reaching a life-long goal I believed was unlikely to ever happen - I applied to Medical School this summer! It has not been an easy journey. While I still have to work much harder to learn and retain the same amount as my classmates, and I still experience mental fatigue and mild anxiety, my drive to overcome my injury in order to become a physician and inspire others in similar situations has blessed me with a miraculous recovery as well as the determination to succeed. All things are possible. Within 24 hours after my injury, my parents were told that the odds of my survival were not good, and that if I was to survive, I would very likely suffer significant permanent damage due to bruising and swelling of my brain. The statistics and predicted prognoses are disheartening, and I urge anyone who is recovering from a TBI not to let statistics define your own recovery outcome. I sincerely pray that my own story provides a little bit of hope to someone out there who needs it.

Sep 26th, 2013 10:02pm

My god that is so accurate especially the tiredness

Sep 25th, 2013 11:40am

I had a TBI 6 years ago and it took my life away...I can no longer work, drive, read well, concentrate, I'm partially sighted and deaf on my right side along with being tired a lot and rely on my fiancé for so much. But I'm getting on with it...I have days that I hate myself but I also have days where I'm so happy to be here...Brain injury confuses me about everything but after finding this site I'm so happy to know that I'm not the only person in the world that has the same feelings and problems...Thank you everyone, I now feel like I belong...again...looking forward to reading what everyone has to say.

Sep 24th, 2013 3:02pm

Really appreciate you sharing this article post.Much thanks again.

Sep 23rd, 2013 3:20am

Thank you. This info is wonderful. I am an 18 year survivor. I have a masters degree, and everyone thinks I'm "fine". You have described me to a T. I have been sending this and the video in part 2 to everyone I know and trust, so they can (maybe) understand!

Sep 21st, 2013 8:21pm

I don't know if this will be read much or not but here we go. My name is Dwight and I am 10 years removed from my brain-injury. I had it while living in Vail, CO and was snowboarding at the time. It was the helmet that saved my life! Literally. For all those new or those helping others cope, don't give up hope! While I'll never be as on-cue as I once was, God has allowed me to be so far from what I was. After about the 3-5 year mark, improvements become very, very minimal. BUT they do occur, which I am still healing to this day. My biggest deficits are short-term memory, impatience, irritability, and I get tired very easily. Don't give up hope everyone, there is life after a TBI. It depends on your attitude toward things and that will help determine your prognosis. (by God's mercy and grace to marry a physician who knew me pre-TBI) If you are reading, thank you, I do hope others may find hope in this.

Sep 20th, 2013 4:27pm

HiI am new to this site.my husband had a really bad brain bleed nearly 6 years ago.he still can't talk is still peg fed right side paralysed no understanding.i think I have come to the end of what I can do to help him now.can anyone suggest anything.

Sep 19th, 2013 11:35am

My husband is 8 weeks post-accident, suffered a TBI, and I shared this article with family members. Still so new to this, but want as much information as I can find to help him in his recovery. I have my own anxieties; what will happen to our marriage, what about our future, money, family, thank you for reminding me that as bad as it is for ME, I have to be there for HIM. I will try to stay patient, though I have to be honest and say that I want my \"real\" husband back! I would suggest to all TBI patients & their families that counseling helps so much, doesn\'t make problems magically go away, but it does give you skills to deal with them. Thank you for this information, and good luck to all of you.

Sep 17th, 2013 6:21am

It is so refreshing to finally figure out why I am the way I am 10 years after having my cancerous brain tumor removed. I am medically in good health but because I look "normal" I wasn't treated for TBI. After struggling with this for all these years, a marriage counselor discovered my problem!! It's so good to hear other people feel the same as I do. I look perfectly fine, no physical disabilities. I guess that's a problem for the medical field. As days go by I become more frustrated with the "major teaching hospital" the did do their job in treating me medically, but not mentally. I am thankful that they saved my life! But if I had come into the hospital trauma unit with a head injury I would've gone thru cognitive and speech rehab. While I sometimes think "what might have been?" if I had rehab 10 yrs ago, I must forget that and move forward. I'm working with my insurance company to get the rehab I really need. My poor family has had to deal with me all this time while thinking I was this horrible person. I really did not have control over my emotions, communication issues, fatigue.... (My tumor was on the right side of my frontal lobe.) I truly did not understand any of my actions myself until my husband & I ended up in marriage counseling. I am thankful for finding sites like this one!!

Sep 16th, 2013 9:49pm

Reading this brought me to tears................ Thanks for such words, I loved how you were able to explain an deliberate exactly how I feel on a regular basis. I have to bookmark this for future reference

Sep 12th, 2013 5:42pm

I was the first case in NC at Duke diagnosed with Anti NMDA receptor encephalitis. My tumor wasnt found for over a year and treatment was experimental, prolonged and incompleted...I have only one person who truly stood by me and gave me all the patience and love i needed....my mother. No one understands and those you provide the information to help them comprehend only take certain facts and apply their ignorance.It takes patience and understanding. My brain is still healing 4 yrs later. If you suffer from a TBI , you are a walking miracle. That is what people should understand...what it is to live with everday

Sep 10th, 2013 7:54pm

My daughter suffered a TBI in 2002 as the result of a car accident. What this article says is so accurate - took me right back to those days. By some miracle, she recovered completely (with a few very minor personality changes) - we are both now volunteers for a support group which offers help to people who have suffered a TBI and their families. I'm in South Africa.

Sep 4th, 2013 2:42am

I am a single mother. As a result of a home invasion, my son received multiple injuries, one of which was in the parietal/occipital region of the brain. He is 23 yrs. old, the incident took place the latter part of last year. He was hospitalized for months. He has been in therapy for months. He is truly not the same. He has stammering words, processing information issues, prolonged preparation, lack of motivation, sleepy a lot. Although in his mind he is saying :cup for water, he may say "p, p,p, then what is it again". So then he gets a verbal prompt such as c, c sound, then he gets it.HE has right side weakness on the entire right side from his right foot all the way up, including the right side of both his left and right eye. At times it is difficult, but I guess I am just feeling so blessed, because the medical professionals didn't expect him to even make it. I am so blessed to have my son. But it is constant work and wondering. Please keep us in your prayers. I am currently seeking all the help I can for him that he be back to normal as possible, its not easy.

Sep 2nd, 2013 5:40pm

As someone with MS, I can relate to most of these situations & feelings. I have foUnd TBI info to be very helpful in dealing with this disease.

Aug 23rd, 2013 5:22pm

This is wonderfully instructive. Thank you so much. For your info, the ADHD Bulletin Board, a Yahoo group, discusses, from time to time, assorted ideas like: paying attention, inattention, processing, working memory, sustained attention, focus, executive function, concentration, visualization, central auditory processing, dyspraxia, whole (forest) vs parts (trees), constructional apraxia, nutrition, the real but small role which medicines can play for some for Inattentive ADHD relief of symptoms, social skills, cognition, perception, consciousness, etc.

Aug 22nd, 2013 9:49am

Thank you for this helpful article. My mom was diagnosed with lung and brain cancer. After a lumbectomy, craniotomy, radiation and chemo, she has finally been given the all clear. The surgery did some damage though. Im 23 and had to take over everything, accounts, policies, annuities etc with no hope. I now have hope that my mom will be back to somewhat her old self one day. Thank you. Patience is the answer Ive needed. This article has helped me very much. Thank you

Jul 19th, 2013 4:32pm

I can relate to many of the personnal stories. Me I am 3 years out from a severe TBI caused by of all things a push bike accident with NO car and I was wearing a helmet. I would like to reply to some early comments about TBI being an invisible injury and people are very slow to understand what means for you. Me I also have an issue with the part of my brain that processes information from my right eye so I have to wear an eye patch to stabilise my vision. The advantage of this eyepatch beside spooking kids that I am a pirate is it also gives me visible evidence that I am not like I use to be. If I need extra visual impact I also have to walk with a quad stick which really identifies me as being disabled to the point that 81 year old little old ladies hold doors open for me or even offer to help up stairs etc. you have to take advantage of your TBI where ever you can. Go for it.

Jul 19th, 2013 3:39am

TBI 1982. My children & wife have been suffering the effects for years. Its useful to read other people's experiences. Makes me feel like I can do something to alter how I behave. I need to do so for the sake of my family and my own. Thanks

Jul 18th, 2013 7:57pm

Thank you for taking Brain Injury out of the closet of ignorance! I have an Acquired Traumatic Brain Injury & got amazing help and support from friends, but, it was several progressive-thinking health care professionals that made it possible for me to believe in myself & future recovery too. It took eleven years of deliberate recovery before I was able to detail it all in my book, The Distracted Yogi: How I Reclaimed My BLISS After Brain Injury & Trauma. I'd come up against so much ignorance, including my own that I felt compelled to write about it so others like me would not have to feel so isolated & freakish! I really thought, mistakenly, that having practiced yogi & meditation for years prior would somehow give me a head-start on the road to reclaiming my sanity after becoming injured-I could not have known then how wrong I was about that. It's just been about 9 months since I've been able to return to meditation using Binural Beats/Brain Entrainment. I strongly recommend these options for anyone struggling to re-connect with their center of gravity-Spiritually speaking that is. My book retells my symptomology story as well as all the dramas I created & attracted plus, the reality that many of us become Drama-Magnets after becoming brain injured. I often characterize my journey as Trauma-to-Drama-to-Transformation! I feel so passionately about encouraging others to tell their own stories too & have included a basic How-To Tell Your Own Story Guide which is a basic blueprint to writing your own book. If you are interested it's available here: http://www.amazon.com/The-Distracted-Yogi-Reclaimed-Brain-Injury/dp/1484953258/ref=sr_1_1?ie=UTF8&qid=1373866378&sr=8-1&keywords=the+distracted+yogi MG Desgagne http://tdyogi.blogspot.ca/

Jul 15th, 2013 1:42am

Wow, I feel like SOMEBODY ACTUALLY UNDERSTANDS ME. Thank you so much. I hope my friends and family read this. Only my 14 year daughter seems to be in near perfect step with my post stroke capabilities and limitations. Unfortunately, my wife passed away two months before my stroke (9 month battle with cancer). I know in my heart, she would have been able to help me. I believe her patience and understanding are now in my daughter's hands. What an amazing kid she brought into this world for us. I am forever grateful for our years together and the daughter she blessed me with.

Jul 9th, 2013 5:20pm

As the primary caregiver and single mom of a teenager with TBI (and get your child off drugs if they are hallucinating...my daughter could not take any of the drugs without inducing high levels of anxiety,etc. Anyway, it has been 2 years. My emotions have been frazzled and the hardest part is keeping myself balanced so I dont loose it with her...and then watching her body shut down when I do loose it. I can also relate to the single mom just trying to make it. I have not found the \"it\" I am a believer in Jesus, have seen his miracles, and mostly pray for His peace and complete healing. I found \"partial\" cures from time to time, and we have long stretches of being better, then not so much. My prayers to each and every one who is walking this walk. Thank you for confirming what I have found, this is not a couple month then back to normal thing at all.

Jun 30th, 2013 9:50pm

Great article. A visionary like Tesla is all too rare, unfortunately. BTW, he was almost knifed by another passenger on his voyage to America. Imagine what life would have been like without his genius. Kigurumi animal onesies

Jun 29th, 2013 7:55am

Stepmom/caregiver to 16 yr old teen. My stepdaughter was life flighted, on life support finally home 2 weeks ago. I have given her rest, chores that she can handle, and play games with her. She nows seems like her old self. She has just developed over the last 5 days a sleeping problem. She feels ther is someone outside, hearing tapping on the windows and refuses to believe it isnt real. I have raised her from 9 yrs old...she was very independent, never up at night. Now she is knocking on the door anywhere from 11pm to 330 am. She is scared very jumpy at night. none of us are getting much sleep. She had been on Gabapentin for 2 weeks, I spole with docs and they dont think its the meds. but we have stopped it anyway. Any other parents have a teen who is having troubles at night??

Jun 27th, 2013 10:13am

for those suffering with mild brain injury, post concussion is extremely similar in that it started with a brain injury. My son suffers with PCS and these are very accurate for the most part. Look up MMTR, Guelph Ontario. People travel from all over North America to see Terry Moore for treatments. He suffered with PCS for 20 years and is now healed 100% and helps others to heal. He is the first sign of real improvement we've seen in over 2 years with our son.

Jun 19th, 2013 9:14pm

What makes you think that all of these recommendations about how to deal with the tbi survivors fade over time??? This article makes it sound like the newly-injured have it the worst and need the kid gloves the most? Brain injury is DEATH. You lose a part of YOU, just like you lose a loved one. Sure, you learn to deal with it, but you never truly recover, you just get used to it. There is STILL cognitive fatigue, STILL problems multi tasking, STILL auditory processing difficulties, and a myriad social, emotional (big time depression), up the wazoo problems in almost every functioning area INCLUDING physical (balance). And we DO deteriorate over time. I have been 30+ years post-TBI (no not combat-related, just a kid at the time...). And I am finally getting the AXE because my boss on the job 10 years now says I am screwing up, fumbling, making errors, not processing info the right way, not working like others and working well WITH others, staying too late - looks bad! I will lose my house not to mention other things - and I am a single woman, and there is no disability in the future, no social security in my state, I am in education, I will get a crap job somewhere cause I am too high functioning (mind you I almost died if they had not put me in a coma but was not rehab-ed in any sense of the word cause it was three decades ago). There is no help out there for people like me. I am trying to get help now to keep my job and my boss is actively working to fire me. The situation is more complicated than this but you get the picture. The life of a TBIer is a nightmare, be it at any level. You have to fight for your rights, and your new you you may really not want.

Jun 18th, 2013 1:17pm

I think this site is wonderful. I agree with the post from Jan. 2 so much. I am very fortunate as TBI injuries are all so different. I am very fortunate to have 10+ years of experience as a teacher (elementary), at-risk youth counselor, and now student service coordinator for college aged students. I have been fortunate to build up my mental strength and abilities and am an intelligent individual; however, that strength is now my weakness. I notice numerous changes about my cognitive abilities and fluctuations in my emotions which frustrates me immensely. This site is great for people to read others situations and experiences.

Jun 13th, 2013 7:50pm

My daughter was severely brain injured at age 5, now at age 22. Earlier on she did really well, a very sweet and pleasant child, but now as she becomes more of an adult, she is just very difficult. She shows no emotion other than when she is upset - pitches fits and just really acts spoiled. She won't say she is sorry when she is wrong or say thank you to someone no matter how often I tell her she should. I try talking to her and she just stares at me without a saying a word. When other people speak to her, she just looks at them and never answer or says a word. She never has an opinion of her own. She doesn't want to try to work. She would be happy if she just sat and watched tv, mostly Disney type shows all day. Sometimes when I am talking to her, and she is starring at me, it looks like no one is in there; almost if she is just a shell. I am so frustrated with her and I don't know what to do. Finding help has been hard.

Jun 9th, 2013 5:22pm

Does anybody regularly experience people saying "I just can't understand why you can't control the things you say and You should be able to stop yourself before you say it, and I just don't believe you". I never want to be around people anymore cause I can't live up to anybody's expectations on a social level. How many of you are recluses because of this?

Jun 8th, 2013 12:16am

Agreed! This is such true honest information that not only the brain injured can use as their guide but for support systems, ie., families, friends, drs., spouses to hold close to them to hopefully better empathize with what we go through on a daily basis.

Jun 7th, 2013 11:48pm

This article is very accurate! I have sent this on to some family members :) I am a 54 year old woman that was born with an AVM in my brain. My AVM ruptured in late 2002 and in early 2003, I underwent 2 embolizations followed by a craniotomy. My brain suffered significant cognitive damage as well as the loss of some of my peripheral vision. I was told (by my doctors) that I would improve for the first two years following my brain surgery, and then I would pretty much "stay" where I ended up in my recovery. I just wanted to say that this has absolutely NOT been the case for me. Today, in 2013, I continue to improve :) My memory is always getting better and the high level executive functions in my brain (short term memory, multi-tasking, visualization) continue to improve :) I think the key is to constantly push yourself and to keep trying new strategies to manage your life. Believing in yourself and surrounding yourself with positive people also helps!

May 30th, 2013 1:44am

I had my TBI thirty years ago. I had midline damage, and some damage to my right hemisphere. Anyway, I have obtained two college degrees and have always had a job. My memory is still poor, however, and I still get very dizzy. My left side is still really numb and slow. I repeat myself a lot. You need to keep going. Give yourself a break. Get plenty of sleep and rest often. Make sure you eat small amounts of food often. Recovery is not a straight line. Tell people about your TBI ahead of time. Write EVERYTHING down. Have a wingman. Remember how lucky you are to still be here. Forgive yourself. You will go on.

May 29th, 2013 11:18am

Seeing all these comments, makes it in black and white. I have had PCS since Jan of 2012. for this first few months I think I was in a state of shock and literally bedridden between the sensory issues,vertigo and vomit inducing headaches. People don\'t understand the why\'s of PCS or that you appear normal. I feel lucky to have stumbled on this site as well as other sites, knowledge is power. I recently fell due to my issues with stability and dislocated my knee and spained my back, so now on top of just functioning have to go to physical therapy before I can start stability rehab. The biggest struggle is depression and the failure factor,, but I have multiple therapists who help and I don\'t care how long it takes I will recover, these post inspire me.

May 25th, 2013 11:19am

Thank You. Very cleansing. I am one of the fortunate ones in that i'm able to lead an almost normal life, yet i still found virtually every one of these applies to me. It's somehow calming to see it written down. Scott.

May 24th, 2013 7:07am

I figured most of this out over the last year of recovery. Unfortunately while I was discovering many of these truths, I was barely capable of recognizing them, and there was no way I could communicate them. Please, do whatever you can to make this a handout at every doctors office whenever someone gets a (lasting) concussion.

May 20th, 2013 12:54am

My ex-friend called me saying she was too drunk to drive herself home, and all I know is that I woke up in the hospital four months later from a wreck. It's been Hell every since then and for those of you that has had this for a much longer time, I am asking for your help, because now I am stuck like this. I have lost my husband because he said he couldn't handle me, my friends have all turned on me because they can't believe I would say things that I never meant to say. I can't explain to them that even though I am thinking of the color blue in my head out loud I will say "purplish". I don't think any of them even want to understand what I am going through. I try so hard to explain it, but they just shut me out. I have been trying to go to college, but just got told by my guidance counselor that because I can't do math, then I can't get my degree to teach History, and maybe I just can't do college. Which is unfair, because I made an A or B- in all the other classes but college algebra. I just really need some advice and I want to know how can I make myself back to who I was before? How can I get ppl to realize this is a result from an injury this isn't just who I am? amber.fink22428@hindscc.edu

May 15th, 2013 12:02pm

I am a TBI patient and I am so happy to have found this,it seems that we the ones with the TBI seem to know more than our family or friends,u would think your family would look up everything about the damage,I just went thru this this week when I seen my mom for the first time since the accident,she was agitated because I couldn't keep up with her,she called me rude and crazy,and said I needed to get off my siezure meds,this is all out of ignorance ,too lazy or just don't care.I love my mother but she caused me to have a few outburst,and for months I kept sending her several readings and websites on brain injuries,I even told her the daughter she once knew is not here that she will meet the new daughter.well it didn't go well at all she made me cry and I didn't want to be around her,pretty darn sad.I was so overloaded I couldn't wait till she left and this is sad,my two sons and my daughter in law has been my Rock,along with all my therapist and Drs. I tried my best but she only seemed to want to do things ,she came to see my eldest son graduate and had received his bachelors Degree in Science,he's in the Air Force,and all she wanted to do was go here and there and I couldn't keep up.This was SELFISH .I thank God for my two sons and my daughter in law ,they been there for me 100%,and as for my mom and the siblings they have no time to read or even try to understand,just how I feel and really went out of their way in everyway possible,I thank GOD FOR MY SON AND MY SONS WIFE,I know it was a very hard year and I still have many challenges but I try my best.It is very sad the one u would think to understand,my mother,was the one who really doesn't think how hard this is for me just to get up and try to make the best out my day.I pray for all those who are ignorant to TBI people.GOD BLESS ALL.

May 8th, 2013 1:28pm

I suffered a brain injury in 1983. I am 52 now and by the grace of God I am in college and passing. My partner does not understand me at times and she says I confuse her.I don't know how to really explain to her what I mean and why I do the things that I do the way I do them. I just thank-god he is with me and he has stayed with me all this time.

May 6th, 2013 8:46am

This is AWESOME!! As a mTBI survivor I too think every discharge packet should have this info. It will help when your thinking... what a long strange trip it's been

May 2nd, 2013 10:09pm

THIS PAGE IS AMAZING, IT HELPED ME UNDERSTAND THAT MY WIFE WHO IS RECOVERING FROM TBI NEEDS AFFECTIONATE BEHAVIOUR FOR THE WHOLE LIFE AND NOT ONLY FOR THE TIME BEING.

Apr 27th, 2013 9:29am

It's been years since my brother's brain injury and this is still helpful to read even though we know most of this already. Partly its good to be reminded that rehabilitation takes years and that even though he is so much better than right after the injury happened he isn't totally better. We all have to continually remind ourselves that while he looks fine, my brother's brain doesn't work the same way it used to. When I find myself saying "Why does he do that?" the answer is that his brain is injured and this is one way he copes with it.

Apr 15th, 2013 8:03pm

i love this so much. it makes me feel so much better. its good to remind myself of all this.

Apr 15th, 2013 1:05am

Thank you so much for giving all of us TBI survivors an outlet where we can see that we are not alone. Thanks!

Apr 14th, 2013 3:37pm

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

Apr 13th, 2013 2:21pm

I am a TBI survivor and this fits me too the T. Thank you so very much, and keep up the great work!

Apr 11th, 2013 1:47pm

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).

Apr 5th, 2013 3:25pm

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...

Apr 3rd, 2013 8:04pm

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.

Apr 1st, 2013 2:45am

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...

Mar 28th, 2013 2:10pm

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.

Mar 22nd, 2013 6:14am

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.

Mar 1st, 2013 8:32pm

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!

Feb 26th, 2013 8:53pm

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!!!

Feb 23rd, 2013 1:59pm

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,

Feb 22nd, 2013 9:29am

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.

Feb 16th, 2013 11:58am

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!!

Feb 13th, 2013 1:22pm

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!

Feb 13th, 2013 4:05am

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

Feb 10th, 2013 8:34pm

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

Feb 9th, 2013 1:41am

Thanks to put all these helpful tips for the brain injury family.

Feb 8th, 2013 5:00pm

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Feb 2nd, 2013 7:00am

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",

Jan 30th, 2013 2:15pm

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.

Jan 23rd, 2013 2:49pm

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.

Jan 18th, 2013 10:54am

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.

Jan 15th, 2013 12:53am

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

Jan 3rd, 2013 6:36pm

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.

Jan 2nd, 2013 3:33pm

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.

Dec 18th, 2012 1:34pm

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.

Dec 15th, 2012 1:03pm

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!

Dec 8th, 2012 2:30am

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.

Dec 6th, 2012 8:40pm

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

Dec 3rd, 2012 9:36pm

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 .

Dec 3rd, 2012 12:27pm

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....

Dec 2nd, 2012 11:19am

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!

Nov 26th, 2012 4:24pm

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.

Nov 26th, 2012 1:35am

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

Nov 22nd, 2012 1:23am

A huge thank you for expressing and publicising what so many of us are going through. This is really helpful.

Nov 21st, 2012 7:58am

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.

Nov 15th, 2012 10:52am

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

Nov 7th, 2012 1:59am

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

Nov 7th, 2012 1:42am

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.

Nov 3rd, 2012 8:12pm

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.

Oct 29th, 2012 7:59am

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

Oct 22nd, 2012 9:33pm

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.

Oct 18th, 2012 7:02pm

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?

Oct 15th, 2012 2:43pm

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.

Oct 13th, 2012 1:08pm

I am a TBI survivor for 5 and a half years now. This is great information exactly how I feel.

Oct 12th, 2012 6:22pm

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

Oct 8th, 2012 7:51pm

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

Oct 2nd, 2012 11:02am

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

Oct 1st, 2012 7:53pm

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.

Sep 16th, 2012 10:05am

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.

Sep 10th, 2012 2:47pm

Dear August 8th, please look up the Brain Injury Alliance of Oregon or call them at 1-800-544-5243. Take good care.

Sep 10th, 2012 2:38pm

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.

Sep 10th, 2012 12:20am

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!!

Sep 2nd, 2012 1:49pm

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. :)

Aug 31st, 2012 9:44pm

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.

Aug 29th, 2012 2:12am

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!

Aug 27th, 2012 3:43pm

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

Aug 23rd, 2012 5:01am

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.

Aug 19th, 2012 6:55am

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.

Aug 18th, 2012 5:23pm

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

Aug 11th, 2012 7:37pm

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.

Aug 8th, 2012 10:14am

I had a stroke 3 years ago, and still have relatives expecting me to do more, more, more! I would like to, but can\'t. I hurt physically. I\'m depressed, I\'m forgetful. I get so confused sometimes. But, no one seems to understand. I would like to share this article on my facebook page and ask my friends and family to please read it. Maybe then they will show a little heart. Thank you for this article. It does give me hope.

Aug 6th, 2012 4:03pm

Really really good article. I have been sending it to everyone. Thank you for sharing this with us x

Aug 4th, 2012 8:47am

Barbara, Many, many years ago, I suffered strokes during several brain surguries, so I KNOW of what YOU are going thru! Please try to connect with me, because, I feel I have so much to offer you: lstuckel@earthlink.net In the begining of my recovery, all that I did was cry, cry and cry, because it was hard for me to understand everything that was going on. I was a very positive person before my medical madness, so I was missing myself. Here was a key for me: I started to SEARCHED for the positives, in the negative time of recovery, and that changed my whole attitude! Good Luck and May God Be With You! Lisa A.Stuckel

Jul 31st, 2012 12:03pm

I was in an accident 1 1/2 years ago and I am still new at this. I so want to get back to where I was in life. I really thought I could , but jokingly said oh this is my new way of life. I now have some insight as to the fact that , this is how its going to be, good days and bad days. Severe depression , have meds for it, sometimes they kick in to slow for my likes. I so can relate to the fact of being overwhelmed, and needing to be alone, for quite time.

Jul 26th, 2012 2:23pm

hey that's really a great post and i like this and thanks for sharing it with us! Mobile Reviews

Jul 26th, 2012 1:33am

I've two brain injuries. The first accident when I was two years of age. So, basically, I've been living with TBI my whole life. And I had another TBI at age twenty-eight. I've a blog, brainalter.com, please visit it and I would really appreciate you becoming a member and/ or leaving a comment: but only if you so wish. I'm glad to have found this site and would like to become a member(or maybe I already am?!). It was soothing yet also so refreshing to read other TBI sufferers ideas. Thanks.

Jul 24th, 2012 6:53pm

As a 15 year survivor of a severe traumatic brain Injury I am still finding things by the grace of God that help me to cope. This was the most concise description of what I go through. My frontal lobe was damaged and tried for years to fit in to what the world told me that I should be. Now I accept that I am different, but in a positive way. You would never know anything was wrong with me, but it is. It took me forever to accept it. Now I try to find the purpose that God has for my life as He is the one that ordained my survival out of a comatose state. Thank you for posting this. It is exact for me....maybe different for another type of brain injury...Great stuff.

Jul 24th, 2012 2:53pm

I\'ts 2am and I can not sleep thinking how can I help my son better even during a simple conversation,my son suffers TBI since nov/2010. He is improving but sometimes there are many misunderstandings at home. Thank you for this article,I will read it everyday when coming back home from work so I don\'t forget.

Jul 23rd, 2012 2:36am

Thank you SO much for posting this! My accident was Feb 2008. These are things I can't make people understand. Words do not come out like they used to, I can't spell like I did (I used to be a writer), and my math skills are now awful.. I sleep ALOT. What comfort and sadness knowing I am not alone..

Jul 16th, 2012 9:37pm

Thank you very much for this article! Here is a poem I wrote . Have you ever had an injury that was Life Changing? I have, Not that I’m bragging. I’ve been concussed for 9 months, or More. Having faith in the doctors, they try to Sneak out the back door. Some are more Heart-felt then others. These gems I’m Blessed to have them as my onlookers. The prescription? Hibernation. The symptoms are as follows: Headache, that you can’t fake, Dizziness, I look like a mess, Ears that ring, worse than white noise, it starts to sing, Confusion, not an illusion, Forgetfulness, we had tests? Vision problems, they are bothersome, Emotional, not like once a month usual. I’d go on, but I can’t remember. That’s pretty good. Some days don’t get any better. The ironic thing is, people Forget, Ignore, or don’t Know. This is a mental injury that I must tow. I try to stay positive keeping my mind off my Limitations. It’s hard to do when you must remind others of the Frustrations. I tend to over analyze things like this. A mental game trying to keep myself Bliss. “When someone breaks their ankle people see them limp. But with me, the only way people see me in pain is if I post it on a blimp!” For this reason teachers, friends, and family treat me the everyday same. But on the inside I want to be Consoled, not to be confused with looking for fame. Many do confuse the injured of wanting as such. We just want to Heal ASAP, to carry on like the rest of the bunch. Being in this state, nothing I can do all day. I am sick of being sick, I Do Say! Being a broken record is the only way to get my point across. I hear stuff as: “it’s amazing how you are holding up, trooper, and you’re boss.” In this time that seems to never End. During these ups and downs I do have few who serve the title of Friend. They say how I’m still enjoyable when I am in such excruciating pain. They help me keep myself sane, while looking out for my brain. I Push myself all the time. Especially when it comes to making these lines rhyme. With this concussion it’s bad that I’m not the person to do it half way. Everything I do is what shouldn’t be done, I must now seriously pay. My Unknown end of my story goes on. Days go by one at a time, sometimes they laugh as I am Withdrawn. My dreams are something I will never give up. My faith keep me in His loving arms drinking of his promising cup. For my hopes I will Wait, Wait, Wait. I Will Have My Promising Dream Of My Own Fate.

Jul 15th, 2012 9:42am

Thank you for this concise article. My son suffered a TBI 1/1/2 yrs. ago. He is recovering remarkably, is working for the summer, went back to college and going again this fall with a reduced load however, expecting too much of himself. He wants his old self and life back. Almost there but his speech is not what it was yet and when you're majoring in broadcasting; that's tough. On to Plan B.

Jul 13th, 2012 10:28pm

Dear ALONE in Texas and anyone who is struggling with depression. There are three things that helped me get through. #1 was to learn that I was going through a grieving process and that it is a process to adjust to one's losses but not a permanent place. #2 was to start a grateful or victory journal, writing down 3 three simple things that made me smile or that felt like progress, at the end of every day. This simple activity shifted my focus to the positive things I could write about every evening and made a tremendous difference in my mood. #3 was to connect with spiritual guidance, whatever that is for you. This can be any group that accepts you as you are and makes you feel good about yourself, as you are. It doesn't have to be organized religion, for me it was the practice of yoga. I hope this is helpful. It won't always be this hard, it does get easier.

Jul 13th, 2012 12:32pm

It's a test and that is all life really is; it's just a test and those people who have sustained a brain injury are being tested more so than most and I know it. I am thankful for what I have gained rather than being resentful over the things I have lost. Nothing really shakes me anymore; nothing.

Jul 5th, 2012 4:06pm

Thank you so much for this article. It is a great deal of relief to know that what I'm experiencing is not just "in my head". It is a true phenomenon and so well explained in this article. I haven't been fully able to explain my cognitive issues to family. I will most certainly be passing this on to them and hope they will now understand.

Jul 4th, 2012 9:09am

TBI surviver for 11 years now. Memory problems still and is REALLY hard to do this by myself but theres no other way!

Jul 2nd, 2012 3:17am

Been dealing with this ALONE and have lost the will to live. Dont have anyone to talk to and isolate myself cause not a soul cares or tries to help. PLEASE, I'm stuck in Odessa,Texas and NEED to move. If theres anyone reading my comment who needes a roomate I'm 31, female can cook,clean and am searching for somewhere to start over. Im honest,loyal and trustworthy. taushaburkholder70@yahoo.com

Jul 2nd, 2012 1:57am

This really helps understand more I have been looing at everything I can find my 24 yr old son was in a car accident on 2/18/12 and has severe brain damage we are still in therapy it is really hard, especially not knowing anything about TBI's. I can't imagine anyone going through this alone and not being there for thier kids no matter what and being patient with them it is your responsibility to make sure they are OK. Keep going with the information people need to know as much as they can to help thier loved ones with tbi.

Jun 27th, 2012 4:34pm

Thanks so much for putting this into the words that I couldn't. I could never come up with the words to let my family and friends know exactly what I was feeling and going through. Now I am able to share my feelings through this article.

Jun 26th, 2012 2:24am

This site is just incredible. Thank you sooooo much. I have found a way to share with others and make it simple for them to get as much info as they choose. I am recovering from what is now considered a moderate TBI. I am 56 years old and recreating myself by choice this time around rather than reacting as like when were are children. My goal, and it's happening, is to be better than I've ever been. Challenging; being forgiving of self and others a great muscle; and, it's happening. I am different and I am coming to be a person that I have dreamed of for a long time... More to go. 5+ years out and continuiung the journey. What else is possible for all of us? My best

Jun 24th, 2012 5:11pm

This is a brilliant article, i am going to show it to the staff at my daughters school, i believe it will help them understand her problems much better. She has a brain tumour, and has had 8 neurosurgeries to remove it, which have all had an effect on her as though she has had a brain injury.

Jun 24th, 2012 5:03pm

Hi folks. I'm writing as a caregiver of a husband with advanced dementia -- brain injury for which there is no cure. Your words are WONDERFUL and HELPFUL and all of us who love you will nod as we read. You are gaining and growing stronger and recovering. I pray the people around you take these words to heart. I will think of them often as I take a deeper, slower breath to deal with the things that dementia has stolen away. I wish you well, and a whole, steady recovery. Thank you for teaching us.

Jun 22nd, 2012 8:32pm

My son was diagnosed with a malignant brain tumor 20 months ago. After 4 surgeries, 3 rounds of chemo, and 5 weeks of cranial radiation, he is doing well. This article was brought to my attention by the fabulous Children's Brain Tumor Foundation. Describes my son exactly. I've been sharing this article so that people can better understand his situation. Thank you so much for this wonderful piece!

Jun 22nd, 2012 4:26pm

Fantastic, finally found some information to pass around the family, so they can start to understand what we have been trying to learn for 5+ years, after my 12 year old daughter was knocked over by a car.

Jun 20th, 2012 2:56pm

I have dealt with a lot of these issues going back to my first brain tumor and first brain surgery when I was 6 yrs. old in 1984. To some degree the technology wasn\'t really there for what they can do now but starting so young with 2 tumors and 4 brain surgeries later, a brain craniotomy and lumpectomy I was able to compensate with the other side of my brain vs. people who\'s brains are fully developed and go through similar circumstances when they are in their 30\'s and up. I still have a lot of the side effects that I deal with on a regular basis and I know that this will be with me for life There are a lot of people that don\'t understand us and will never unless they go through this or have someone close go through this. The best suggestion I can give to any of you is don\'t let this label decide who you are or let others tell you who you are. surround yourself with a good support system and don\'t waste your time with the losers. They never will understand and karma is a b--ch.

Jun 18th, 2012 2:59pm

This is what I want people around me to hear: Don't get upset with me if I say I can't remember. It's not an excuse....if I say I can't remember something, it's because I can't!

Jun 10th, 2012 9:47am

So true, all the points in this list. I have to be alone a lot of the time just to get things done, and am not sure friends understand how even years later, there are still big changes from how I was before the TBI.

Jun 6th, 2012 11:11am

Thumbs up! I agree with every single statement! How true! Those who wrote what they experienced are in the way to recovery! How many are those who give up?!

Jun 5th, 2012 3:09am

Thank you for writing and posting this! I could not have said it better. TBI, mTBI and CTE is so misunderstood so survivors have to not only contend with living and coping with the condition, they also have to deal with insensitivity that often borders on abuse!

Jun 1st, 2012 11:56am

Thank you so much for this, as it has been a lifesaver for me to explain to my friends why I am a bit slow and seem spaced out... Thank you! Murray Dunlap

May 30th, 2012 2:34pm

Dear May 24th, I'm sorry you don't feel like you have any supportive people around you. I hope you will seek other supports like counseling or call your state brain injury association.

May 26th, 2012 12:18am

Nobody wants to understand me and dosen\'t. I do suffer from post tramatic stress and anxity because of tramatic events in my life and have had several head injuries. What I feel, is that people are trying to make me more sick and I feel sometimes overwhemlb becausre of people being abusive towards me instead of being supportive and understanding. That is wrong what people are doing to me. I feel sometimes that my heart is going to give out on me and that someone that knows me is causing me to become stressed out. I won\'t be surpried if my heart give out.

May 24th, 2012 6:21pm

Woops! In my previous comment, the reference to the posting on May 16th should be March 16th! My apologies for any confusion. As you can probably relate, that is what happens when I am tired! Barbara

May 9th, 2012 11:03am

From the author, Barbara Webster: Dear May 16th and anyone else who would like to know more, please contact Marilyn Lash at: orders@lapublishing.com, the publisher of my book, Lost and Found and this article. Many thanks for all of your thoughtful comments. I am deeply touched to know that so many find this article helpful in some way. With gratitude and prayers for our continued rehabilitation and healing, Barbara

May 8th, 2012 9:24am

I love what you wrote. It is 100% applicable to children with autism as well. Joyce Tran, author of "Teaching Your Child with Love and Skill: a Guide for Parents and Other Educators of Children with Autism, including Moderate to Severe Autism" to be published by Jessica Kingsley Pub. in May, 2012 joyceshow.wordpress.com

Mar 28th, 2012 3:20pm

Thank you so much for putting this into words. I've been suffering with TBI since 2001 due to an auto accident. I deal with every single one of these bullet points each day, but fall short on the ability to find the words to help explain what I'm dealing with or why I have to do things as I do. This is extremely validating and very much appreciated.

Mar 24th, 2012 8:09pm

Great article! thank you for writing it , hopefully this will help family members and friends understand a little more what there loved one is going through...

Mar 22nd, 2012 11:21am

I love this article. I just recovered my sense of smell. This is not a lie, I was using a males perfumefor over a yar. withou noticing. This past week I woke up and I was able to smell... I spend over $400 in perfume. I lost it but I just found it, memry is still an issue but I know I am doing much better. PLease be hopefull, we have reasons to be.

Mar 22nd, 2012 10:03am

I had an AVMTBI 6 yrs ago and lost all my memory. I can relate to every word written in this article. I was going to college to become a RN working as a CNA and I no longer can do so. My physical abilities are xtreemly limited. I have been going from 1 specialist to another and they seem to me that I am more of a bother than wanting to help. So I am going to take a break from them. I have enough problems I do not need there negative disposition.

Mar 16th, 2012 9:33pm

need to get in contact with the writer of this Barbra Webster, to talk about making this go even more public.

Mar 16th, 2012 1:34pm

This list is well written-I will show it to family and friends,some 'do not get it'. I accidentally shot myself in the head about 3 years ago while test firing a rifle I'd just fixed, a ricochet from a .30-30 hit just above my left eye. Fortunately, it did not penetrate my thick skull. It sure rang my bell, though! Since then, no short term memory, almost 'flat' emotions, no libido, easily distracted and confused, etc. All these have endeared my me to my wife, NOT! The main problem I've found is my pain tolerance disappeared.Things that were an annoyance before the TBI are now excruciatingly painful, which makes the degenerating, arthritic joints and the gout a masochists' delight. I am not a masochist.

Mar 10th, 2012 9:10am

I absolutely love this article. It has helped my family and I tremendously. I'm a brain aneurysm survivor. I wish that Facebook would allow this to be shared instead of blocking it as "spammy." In honor of National Traumatic Brain Injury Awareness Month, this would the perfect time to add to world awareness with this article.

Mar 5th, 2012 8:40am

I read this article and was in shock!! I have never sustained a traumatic head injury. But, in 2008, I had a tumor on my pituitary gland that ruptured, filling the cavity of my head with blood. It took six months before all the blood had dissipated. At the exact same time this tumor ruptured, I developed severe vertigo, migraines and cluster headaches. It took several years, but my neurologist has ran all the tests and will most likely diagnose me with Meniere\'s Disease (a disease of the inner ear) at my next visit. They claim the Meniere\'s is unrelated to the tumor...just bad luck that it all hit at the same time. Reading this article was a Godsend to me! I have the exact same problems as many of you. Well, not exactly as I have never had to undergo any type of physical therapy. And I sure don\'t want to take away from the pain and suffering that all of you have gone through. I just wanted to point out that all this can also be true of someone who has had a brain injury not caused by an accident.

Mar 4th, 2012 11:27am

Thanks for doing the word-finding for me! This article is exactly what I wished so often that I could explain to people when I have problems from my brain injury.

Mar 1st, 2012 6:09pm

Hello, I suffered from a T.B.I last year around this time. This past year had been hell on earth. I nearly almost died at the beginning of the month because my brain wasn't getting the proper nutrition to heal. It was as if I had the gates of Hell in my head for this whole year. I had severe confusion, Pure-O ocd (the doubting disease), horrible memory problems, massive migraines, no motivation to do anything (even live), no good emotions,anxiety that caused me to go into flight or fight mode, horrible depression and almost a character change. But, by faith in Christ and refusing to die I did some research on what can regenerate brain cells, I found that changing my diet to all organic foods(Salmon, chicken, walnuts, flaxseed, blue berries, eggs, almonds, 100% extra virgin olive oil, and not eating anything processed, packaged or unadulterated, drinking raw milk and pure alkaline water, fish oil vitamins, B-complex and St. John's wort could do so. It has been about 21 days since I have started this diet along with excersice and I can say that I am almost fully better. I have no migraines whatsoever, my thoughts are aligning up, I can sleep like a baby, and I have motivation to live. I am still struggling with the OCD, but it has slowed down alot and I expect it to leave at this rate I am going. I share this with those who are struggling with a T.B.I. I had to leave school to come back home and heal properly. I am hoping and praying that I will be fully recovered in the next couple of months. Praise God! There is hope friends!

Feb 27th, 2012 5:07am

I became a Neurofeedback practioner to help a 53 year old friend who\'d had an open head TBI at the age of 5. He was in a coma for 30 days but survived. His subsequent life was a living hell. He suffered from hard core drug and alcholol addiction until he was 50 when I met him. Last hear he had a total shoulder replacement and the general anastesia really knocked him down. Neurofeedback has now made a huge difference in his life as well as other TBI client I\'ve worked with. Effects of Anastesia were completely lifted, Orgainization skills improved markedly, sleep improved, memory improved, depression lifted, stressors became less so. Neurofeedback is brain training on steriods and can rapidly accelerate progress with retraining the brain. Please look in to it as it can change your lives for the very much better in a very short amount of time!

Feb 26th, 2012 10:53am

Hello, i am a survivor of TBI, i have just recently been trying to make some friends on facebook, not really noing what i was doing, they have blocked me, cant even get to sign in, through my dissability, i have cognitive problems , i tink there is to much going on for me to coprehend, it hard enough having this dissability, the worse is putting up with peoples and businesses disriminating against me, my main focus on my facebook page was TBI,i am tring my best to make some friends as i have none , live by myself, now faceebook has cut me off, this was quite important to me at the moment, i am having a opperation tommorow, the general anesthetic really effects me quite badly, i fall into a deep depressive hole and feel like hurting myself, the facebook page was all i had left to keep me going, is there anyone there who can contact them and restart my page ,please. Paul Riddler

Feb 13th, 2012 10:34pm

This website fulls me with hope, thank you for suppling a great place for people like me, who are TBI "survivors" Paul. Newzealand.

Feb 10th, 2012 9:05pm

Thank you for providing this great website, there are not many if any groups here in New Zealand, i no i am not alone now, best wishes to all TBI survivors out there. Paul, Eternal optimist.

Feb 10th, 2012 4:16am

Greetings, my name is Paul, i live in New Zealand, i am a survivor of TBI, or as we call it here AHI, aquired head injury, back in 1991, i was a victim of a home invasion,i tried to stop the offender raping a lady at my house, he was much bigger than me and had a base ball bat,didn,t recieve medical attention till the next day,nearly died, fractued skull, after this my life fell to bits, i lost everything, my job, my house , partner, ended up homeless on the streets, pretty tough when you cant think straight, well thats what i used to call it anyway, used to get picked up by the police for being drunk and not a drop i had drunk, i suppose i was pretty angry back then, but then thats another symtom of TBI, the Accident compensation corporation of Newzealand found an easy out from caring for me, i was angry at what a specialist said, or didnt understand what he said , and cleared his desk, he wrote a unfavourable report, No Rehabilitation for me, i try nto to reflect on the past years to much because i get pretty sad and can slip pretty fast into a bad depression. I am 51 now, live by myself quite isolated really, my mum passed away 18 months ago, she was the one person who took the time to understand my dissability, the rest of my family , just kicked me out of the house 3 days after the funeral, not much empathy there. Anyway i have been given some strength from reading about other peoples challenges and successes, a lady said to me the other day , "your a survivor" to be honest there have been times in my life where i wish i hadn't been. I have another challenge going on at the moment, i have Kidney stones, the had to operate lythotripsy, think i spelt that wrong, anyway they used a general anesthic, for the op, after the operation i felt different, i felt really sucisidal, very dark indeed , they kicked me out of Palmerston North Hospital, the next day after the op. I have another operation sceduled for 15/2/2012, at the hospital, i pre warned them about my head injury, i am very scared that it will be even worse than the last time, they do not seen to care or understand, i was also given morphine and tramadol, and about 4 other drugs, i am pretty worried that this op could be curtains for me, sorry but i am worried. Before i got unwell with kidney stones , i found the best thing for me was to help people, and stick to a routine, keep my exersize levels up, and for me one of the most important sleep when you want to sleep, obey your body, be kind to yourself, i used to berate myself hard out for years, all this gained was varing degrees of depression, i also take 200 mgs of vitimin B per day, and get a Vb injection every 6 months, i think this helps to stimulate memory, oh well, at least i cant remember alot of the bad things that happened to me when i was homeless, lol, sorry AHI humour, hey guys and girls i look forward to corresponding with you in the future. Every day above groud is a good day, Paul Eternal Optimist. My email adress, ioablogs@gmail.com

Feb 10th, 2012 3:53am

It\'s just like someone climbed in my head and said: \"you\'ll be OK\" Thank you, and I will struggle on, as tough as today is. Just a year and half along, and I thought it was tough just to hear the words \"traumatic brain injury\". What\'s tough is today. \"... man waiting with patience\" = Henning

Feb 7th, 2012 7:37pm

(sigh )8 years later the struggle moves forward hand in hand with jesus and thank you for my dear friends who make my recovery easier every day.

Feb 4th, 2012 8:57pm

I needed this 20 years ago I could never explain to people in words what was going on in my brain but that explains it perfectly. Thank You.

Feb 1st, 2012 7:06am

Thank you so true, i had a hemmorage due to AVM removal and this is so true :)

Jan 31st, 2012 7:53am

This is such an excellent article and it seems to read my "mind". I was involved in a car crash and got a tree in the head through the door of an old corvette stingray which shatters as it is made of fiberglass. It wasn't until weeks later that deficits started showing up. I sunk into a deep depression, suffer from sleep problems which make brainwork worst. People outside my immediate family just don't seem to get it. It has been almost 8 years now and according to a recent neuropsychological testing done, I'm still at the same place. I have learned to deal with it for the most part, I'm on medication for the depression, anxiety, PTSD, and migraines. My life changed in a split second. I'm who I was before, just different. My husband says he loves his "second wife" as much as the "first". We've been married 33 years. Without the ongoing support and love of him and our 3 adult children, I wouldn't be here now. This is a great site.

Jan 30th, 2012 11:11am

This is a great article. I am 28 years old now, but I hit a tree when I was 16, as it came in the passenger door. I got a concussion from the tree on my right frontal lobe. I got TBI and have been slow since. Well, not slow, just how you described it in the article. I feel like it read my brainwaves, what ones I have left. Thank you

Jan 28th, 2012 10:20am

I SO CAN RELATE TO THIS..MY DAUGHTER IS 17 AND DEEP TBI SINCE 2007 FROM CANOEING ACCIDENT

Jan 26th, 2012 11:49am

Thank you everyone, that participate in this site; I feel like I am always 'work under progress', and understanding fellow challenged people's views is VERY HELPFUL! and finally, addition's towards a good attitude ....really is priceless~ David

Jan 23rd, 2012 4:42pm

FANTASTIC! - Its "about time" that someone got it right and finally wrote this down! I certainly could have used this in 1999. (year of my TBI) This information needs to be circulated to not only family & friends, but also to neighbors, employers and the general public. Brain Injury does NOT EQUAL loss of intellectual capacity! Thank you very much for putting this into a simple formate for others to understand. Hopefully with more of this type of education TBI can finally be addressed respectfully in our lives and communities. (TBI survivor aug. 1999)

Jan 22nd, 2012 5:30pm

This is great insight for loved ones of TBI survivors. My husband\'s injury date is approaching 2 years this week. After 42 years together it is a struggle for both of us to adjust to \" the new Jeff\". Through love & commitment the mantra in our house is \' this is a process\'. It took me a long time to gain the understanding that Jeff\'s lack of improvement was because he wasn\'t trying hard enough. We are in a much better place now that I have let go of the anger & have accepted that challenges God has given us. God has a reason.... & I trust that this experience was intended for both Jeff & I to grow. We are growing! The best statement I ever saw in writing ( & it\'s taped in a place where only I see it) is this: You don\'t recover from a TBI. You learn to live with it.

Jan 20th, 2012 6:57pm

Thank you for putting this so well. I find I know what I want to say to explain my situation since brain injury but just as quickly forget and miss the opportunity to deal with situations where I am judged harshly. That is brilliant!

Jan 14th, 2012 4:55pm

I was in a drowning accident 17 years ago. The effect on me has been profound and at times very hard to describe. People don't understand why I'm so tired and that I get really exhausted when they want to talk and talk. I am getting better, but it's very slow and extremely frustrating. I sent this to my Mum in the hope that she might get some insight.

Jan 8th, 2012 12:33am

This is absolutely magnificent. It is EXACTLY what the world needs to read & UNDERSTAND. I started a blog only last week to try & help others 'get-it'. I will absolutely be putting this up on my blog & will keep re-posting to push the message. Thank you http://abumptothehead.wordpress.com https://www.facebook.com/pages/Abumptothehead/207941139296925?sk=wall

Jan 7th, 2012 6:41pm

The thing about TBI that bothers me most is that people who don't have it or don't know it mostly hurt the rehabilitation of it. Since mine occurred at 16 during the formation years of my life all the bad advice, bad instruction, bad support, bad participation and bad care doubled the time it took to get better. I'm lucky that i learned a few things about money on the way so that i could finally separate myself and isolate myself to allow my own body to correct itself.

Jan 7th, 2012 1:01pm

This was putting letters to words, to sentences, formulating a simple explanation for the varied experiences we all have as TBI survivors. Brilliantly! Thank you very much and printing as well to share. Heart to Heart, Hand to Hand, Eye to Eye. Peace & Understanding be with ALL.

Jan 6th, 2012 10:54pm

I have discovered and posted this to my daughter's FACEBOOK page who has TBI due to a near-fatal auto accident 12-29-10. I am her Legal Guardian and each day is a challenge and inspiration! My daughter was Head Triage Nurse for years before this accident and she observes that it is hard when you "know too much".

Jan 6th, 2012 4:59pm

Very interesting to read so many of the statements I can relate with. It is a challenge everyday but with time things get better!!

Jan 6th, 2012 1:23pm

I find it difficult to chat with people, I dont know. It is especially more difficult as I look normal, except I have alot of scars as a result of the RTA in which I got the ABI. It is difficult for me to try to overcome this obstacle, as I have no real support systems now!

Jan 6th, 2012 12:35pm

tears rolling down my eyes as im reading this. It's like God answered my prayers. my family do not understand at all they do not even accept my TBI. I have had several explosive tempers with them when I try to explain to them and did not know how to put it in words. Thank you so very much for understanding.

Dec 10th, 2011 4:05pm

In 1981, I was in a car crash, for thirty years i have lived with Frontal Lobe Damage. Until the internet came around I felt i lived in my own nightmare. So much more info on brain damage, especially Frontal lobe in the news these days. War, football, ... head injuries have brought the light to the world on what i struggled thru alone for too long. Excessive sleeping pills for years, none would shut my brain down, now hear that thoses sleeping pills prevent the brain from attempting to heal itself. I have taken Elival for sleep, depression, pain and ritalin for the daytime to keep me somewhat focused. so much to say on this subject.... been writing poetry for years and was a main therpy for me over the years.

Dec 9th, 2011 4:06pm

My brain was under autoimmune attack for 10 years before my doctors correctly diagnosed it, so it's not traumatic, just traumatic to me. This article is very helpful in validating what i am going through. Going to print it out and put it on my family's fridge, as they don't "get it".

Nov 28th, 2011 4:57am

Wow! This is very similar to a section on my own web site. I am recovering from TBI sustained 11 1/2 years ago and am actually only now just starting to be able to navigate my way around the web sites for those of us with TBI's. Because I find lots of information on one screen very overwhelming I have set up a site that I hope may be easier for people like me to understand. For more on this subject please come and visit 'me' - I would love to receive your support! http://www.mylatentself.co.uk/you-think-i-know/

Nov 4th, 2011 10:28am

Finally, a site that helps my family understand why I do the things I do. About 6 years ago I survived an AVM that ruptured. It is an every day struggle and changed the person I was. Has changed my children\'s lives forever too. Tears just about everyday.

Sep 30th, 2011 2:03am

My nephew was in an automobile in 1979 and was in a semi-coma for 55 days with a TBI. At that time I was his guardian and sought help from the only organization around our area at that time that told me he could function in normal classes. He even got an early childhood education degree, but he was never able to hold a job at any school for more than one year. After the last one, the lead teacher informed me that not only, under the umbrella of cognitive behavior, did he have a short-term memory problem but he had trouble with reasoning and thinking. That made everything click into place. He also cannot manage money which I have found to be true of other TBI'ers. Later he found a TBI support group of which he is a member. The support he receives from that was, I think, a lifesaver for him.

Sep 16th, 2011 2:00pm

My husband is 3 years post TBI (he was shot in the head). I read him this article & he disagreed with many of the statements. He wants people to know that HE often thinks he has more stamina than he does, can do more things than he can & understands more than he does. He wishes people would humor him a bit & not say "I told you so" when he thinks he can do more than he really can do.

Sep 14th, 2011 4:12pm

Thank you so much for this article. I have a son currently in high school with a brain injury. He is able to participate in college prep classes with accommodations. I have forwarded a copy of this article to all of his teachers. They are grateful to have a way to understand him and his efforts.

Sep 12th, 2011 10:04pm

after surviving a suside vest IED while serving in afghanistan.this was very helpful for me to try and understand what i am going thru and putting my family thru. my hope is to help my wife and family understand.

Sep 12th, 2011 12:06pm

Reading this made me cry.. you found the words I've been searching for so long. Thank you~

Aug 31st, 2011 11:52am

as a mild TBI patient, i've felt all these things along with great frustration when others didn't understand. i think i'm going to post this as my status on facebook once a day. thanks! i think i'm going to start going to support groups, so i can be around people who truly do understand.

Aug 26th, 2011 2:26pm

Surviving a brain injury has been a slow process. The list provided here gives me thanks to those who have researched this issue. I have live alone, so when I presented my MRI to my father..no response. I have lost communication with others but not with the TBI team here in Colorado Springs, very good organizations out there for those who need it!

Aug 25th, 2011 9:05pm

Thank you soo much as a mother of a 20yr old with a TBI I have struggled to find something so simple yet explains so much. I am certainly going to print this off and pass it round my friends to help them understand. Thanks.

Aug 23rd, 2011 4:33am

yes i wish that when i got my tbi 12-25-1972 while serving in in the us navy i was in a severe hellicopter crash instead of getting help i gotPUNNISHED abused medical neglect right here in the good USA as of today still no help been told iam costing the VA a lot of money

Aug 13th, 2011 11:11pm

YES I WANT TO THANK YOU FOR MAKING IT EASYER TO UNDER STAND MORE HOW MY WIFE FEELS AND THE WAY SHE SEE\'S THINGS. I KNOW THAT READING THIS SURE MAKES ME SEE THINGS A LOT BETTER. I\'M GOING TO PRINT A FEW COPYS FOR A FEW FAMILY MEMBERS SO THEY WILL UNDER STAND JUST WHATS GOING ON WHEN THOSE TIMES ACURE.

Aug 9th, 2011 2:41pm

tears...this is what i have wanted to scream at my family for three years, i am glad i can share it in a more constructive way. I was discharged with no follow-up, and absolutely no provider anywhere along hospital recovery even mentioned tbi to me or my family. i thought i was alone. i understand now. thx maybe my loved ones will too.

Aug 8th, 2011 9:51am

well done, team amazing! thanks for the work and thought your group put into this. i'm sure it will be a help for many of us!

Aug 7th, 2011 5:24pm

thank you for posting this; patience is more than a small virtue when dealing with an injured brain.

Aug 6th, 2011 9:32pm

I suggest adding that talking on the phone is quite difficult. Talking face to face allows me to use gestures and facial expression to make up for many of the words that I cannot instantly recall and allows me to avoid interruptions These interruptions often cause me to lose track of what I am trying to say and my effort to communicate simply fails.

Aug 5th, 2011 9:00am

Thank you so much for this insight into my daughters brain, I know this is going to help my family and friends understand just a little more about the injury my daughter has to deal with for a lot of years to come......Kath

Aug 5th, 2011 5:53am

Excellent piece! Thank you for putting all of these ideas into one article... we've heard each of them so many times. (signed) Wendy, Encephalitis Global, Inc.

Aug 4th, 2011 9:14pm

THIS WEBSITE IS AWESOME!!!! I AM A TRAUMATIC BRAIN INJURY SURVIOR OF 18 YERES. THIS SITE IS SO RITE ON OF SOM MANY THIGS I AM , HAVE, & CONTINUE TO STUGGEL WITH. I FEEL THAT THIS WAS A BLESSINGS TO FIND. SOMEONE THAT GETS IT ALL. I AM NOT ABEL TO REED BOOKS BECUZ COMPRENSION, BUT I AM ORDERING SO FRENDS WILL GET ME MORE. THANK YUO SO MUCH FOR THIS SITE.....

Aug 4th, 2011 1:35pm

Thank you, Thank you! Everyone expects my 20 year old to get on with her life. I am printing this up to show the next person who pushes her beyond what she is capable of at this point of her rehabilation.

Aug 3rd, 2011 6:33pm

wow, amazing! my 20 yr old has a brain injury, thank you for posting this, i will post on his site. thank you and blessings.

Aug 2nd, 2011 7:37pm

I am printing this to give to my 12 year old sons school/teacher. What wonderful advise for all of us dealing with a loved one following a brain injury!

Aug 2nd, 2011 4:59pm

These are amazing things you have said. Every one applies to my daughter who has TBI. I agree they should be in a packet somewhere!

Aug 1st, 2011 4:40pm

ive wanted to say all this for so long!!!!!!!!

Aug 1st, 2011 12:34am

OMG, this is awesome. I wish this could be part of any discharge packet for families of TBI survivors!!! Way to go. Steff- Severe TBI survivor 24 yrs and Board Member for Brain Injury Association Michigan.

Jul 30th, 2011 8:59pm


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