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

Return to article

Comments (795)

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

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
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!
I was really grateful for this article. I've been trying to explain some of these things to my family and aides, but I feel like I am being dismissed and then nothing changes. It is soooo great to have something in writing to give my words some authority (though, in a perfect world, I wouldn't need an article to validate my experiences).
I have a brain injury from a person who ran me over I truly can\'t believe how my life is and truly people who do not have this injury do not understand how we are or the things we deal with it truly It is bad I truly hate I lived threw this...
It's good too feel that other survivors feel like this, too. Everyone thinks I'm nearly back to normal. It's good to know that other people have the same oddities, it is not just me.
thank you for this info..i had tumor and surgery gong on 5 years in october..so hard for me to explain to my family and friends and doctors because i couldn't put it all together what's happening in my head and how hard simple things can get..i call it hitting a wall and even get nausus..this articla put it all into words that are now understood..God bless the panel and this foundation for the words...
I am 23, I got into a car accedent when I was 10 years old.... I get so frustrate with my feelings and emotions that I can never seem to describe how I feel.... My girlfriend is very negative and is always getting mad at me for forgetting things, and having to remind me of stuff... I really hope that when she reads this things will get better. I am going to get my dad to read it too.
Thank you so much for this article. I cried after reading it. I am going to have some of my loved ones read this as soon as I can. This article gave me words which I cannot find to tell them what is going on in my head. I was injured while on duty as a correctional officer and had my nerves severed in my jaw in two locations due to two punches to the face. It is 7 or 8 years later and I am on disability. I hate it and the fact that my ability to do things seems to be getting worse. I miss working, being able to work, and other things I seem to not be able to do anymore. I am taking my girlfriend with me to my first neurologist/neuropsychologist appointment next month. I have to know what I am dealing with because I am scared that this thing will progress and one day I may not know what I am doing as I am doing it.
I had brain surgery almost 3 years ago, and these are my thoughts exactly. Now I won't have difficulty in explaining what I'm going through. Thank you!
I love this site. I was brought here through a homework assignment, researching TBI and memory loss. I became a student of psychology in 2009. On October2, 2010 my husband was jumped by several men and was in a coma and in the trauma ward of the hospital until the end of March 2011. While hospitalized he suffered many surgeries including a tracheotomy.When he was released he was incontinent and on a puree and thickened liquid diet. He was in a wheelchair, and heard voices, and was up all hours of the night. In 3 weeks of him coming home,I was able to get a total of 20hrs of sleep. This made me manic and I had a hard time coping. He still suffers with balance issues and memory loss. But he is able to walk with a cane and has made leaps and bounds in his recovery. He no longer hears or sees things that aren't there. He does however have a hard time focusing on things and cannot attempt the internet yet; however, I read him this article and it made him excited and moved. He said that it "hit the nail on the head". We will definitely continue to visit this site, as it has helped him to understand why he feels compelled to do things almost in an OCD fashion at times. He also has trouble with feeling "drunk" at times, and was wondering if anyone else has had that experience? We enjoyed being able to read and comment without having to join anything as well. Thank you for this site!!!
Thank Jesus for this page, this has answered some questions about myself who is also a TBI survivor, my stress has been high because I've been asking for two years now why I'm so emotional now, why my head has little pains where my scar is,
I to have had a severe brain injury as a result of a motorcycle accident 20 years ago. Today I still suffer from Migraines and short and long term memory and seem to be a little more emotional at times along with being afraid of things. I used to swim really well and now if my face hits the water my brain says I can breathe well I now have a fear of water because of it. It has taken me 20 years to rebuild my life and glad I found this site because no one understands what it is like for TBI people. I was in a coma for 3 months and prognosis was not good. I was told I would be in wheelchair and not be able to do anything again. Well my faith in GOD has proven all wrong. I today own with my husband a trucking company and I do all the dispatching for the company and manage a house with 2 children and I have raised 2 other children. My hubby still has concerns why I act like I do with one things but this site will help him understand a little. I have had to relearn how to walk, talk, read, write. I still have some balance problems but the last fall I took was over 2 years ago so it is getting better. I have faith that we all will be cured if we have faith.