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

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.

Posted on BrainLine July 28, 2011

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

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
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.
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
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/
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?
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.
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.
My god that is so accurate especially the tiredness
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.
Really appreciate you sharing this article post.Much thanks again.
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!
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.
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.
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.
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!!
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
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
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.
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.
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.
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.
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
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.
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
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/
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.
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.

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

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??
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.
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.
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.
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.
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?
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.
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!
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.
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.
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.
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.
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
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.
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.
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
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.
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.
i love this so much. it makes me feel so much better. its good to remind myself of all this.
Thank you so much for giving all of us TBI survivors an outlet where we can see that we are not alone. Thanks!
hi all.i had a car crash in aug 2008, i walked away without a scarch and worked for a week fell and hit the side of the door then went to my GP who gave me a sick note for two weeks,i payed for a mri scan and was told i had all the signs of post concussion sydrome and left to get on with it.i felt my head was to heavy,poor balance,did not feel hungry,was confused,couldent stand noise,have short term memory,feel tired all the time,have problems when there is more then a few people around me. i was sacked from my Job that i loved,and my family could not understand my behaviour
I am a TBI survivor and this fits me too the T. Thank you so very much, and keep up the great work!

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