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

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My Prayers to you as I know what your going thru but to my surprise your going on 15 yrs? and your still recovering? i'm going on 4 yrs and i'm still pissed at this for i deal with same symptoms as you discussed at beginning as well as extensive memory loss as far back as childhood and people I've know my whole life. I've learned to focus on the hour at present and on gathering my skills again that I've lost in life wither professionally or personally. I realize it also has affected my intimate life as well which is probably for the better. I have to deal with neurological nerve damage extensive with spinal damage and TBI. Any change in the barometric pressure will trigger convulsions, and tightening of the muscles in the jaw/throat, and neck region that alters my voice and body into a handicap person. I had to move back home for help with daily life on bad days. I sleep long hours. If i'm not at work which is a therapy for me i'm home in bed and i can only drive short distances. you've mentioned about being "a mystery to your own self" "AMEN SISTA!!" and yes stressing out on your very own frustrations exactly what i'm going thru. What i also feel is as if I'm a burden to my family cause i can tell i'm frustrating to them. I've had many people turn there backs on me including family due to this but i figured i'm better off for i'm too concerned about my health to care. what kind of help or "therapy" you do to help yourself?.. outside of any medical help? for me i look for jobs that will help regain my many lost skills such as cooking. it's weird how your body knows what to do yet your brain doesn't which is y I've learn to follow my body and listen to my instincts. i do it slowly with cation but it's not led me astray yet. lol.. I also read which is a hobby, I exercise as often as i can even if it is short. the one thing that I've been able to do is watch the same movie/s back to back and not be able to recall anything in it knowingly I've just watched it. I hope to correspond with you soon. thanks again for your story it helps me with i'm not the only one coping with these.

Hello, I did try to respond a few days ago, however I think I pushed the wrong button, I clicked on the wrong one, (it erased what I wrote)

Hi Everyone, I once in a while can tolerate the computer screen for short periods of time, if I am on to long it sets off some of my issues, "Migraine Like Headaches"

I understand about Memory issues D, and I am currently waiting for one of my "Good Days" I try not to over do it on those days, I think I am regulating a little better these days, I appreciate everyone's sharing on this difficult issue.

I am trying to enter into "Re-Discovery" phase in hopes of getting back some things that I have lost, I have learned I have to pace myself and do step by step, if I try to do to much all at once I end up feeling a few steps behind sometimes. I get frustrated sometimes because I see what I want to do and try to get my Goals finished, however the limitations associated with TBI slows me down and it is very frustrating. I am learning, however that if I get frustrated it sets me even further behind ,so currently working with my Dr. on working on Realistic Expectations for myself, and often reminded about doing things step by step. REALISTIC EXPECTATIONS of 2018 is better than putting all that pressure for New Years Resolutions. One of mine is Patience, patience for myself as well as others. Patience for the accumulation of my effort to be seen by others , and patience for time sometime, Just to be still sometimes to reflect , Please know others go through these frustrations, and you are not alone. I would hope you have a Group in your area, mine is kinda far away, my Realistic Expectation for myself is to go atleast once a month ( for a while I was only going every 3 or 4 months), I just try to hope that the day (4 or 5 times a month) that I have energy will line up once in awhile with the day that Group is scheduled and so I eventually was able to increase it to once a month (sometimes twice a month :) I am working on making it to Creative writing this next month and Art Museum (I am trying to learn not to get frustrated with myself if I don't make it) . We can build on the building blocks and eventually see the progress. Human Connection is also very important.

Thank You for responding , just make sure you push the save button so it posts correctly, HAPPY HOLIDAYS, and HAVE A WONDERFUL NEW YEAR! My Prayer for everyone is to create Realistic Expectations for yourself and also for Loved ones to better bridge the gap with Understanding, Love, Compassion and Empathy,

Thank You,
sincerely,
with a Hopeful Heart,
Angela in Colorado

I can not believe how this article just pin pointed out so many of my symptoms. I really like this page.

My sister has 9 brain aneurysms some have been tied/coiled etc. My sister had a massive bleed back 5 years ago and the doctors didn't think there was 20% chance of survival but she became his first to have 9 and still here today. She lost her short-term memory and her life change enormously. She does have bouts of depression due to her strong seizure meds. Headway helped my sister hugely and her life is still a work in a progress. Thank you for this it does help to understand more.

May 26, 2008 I suffered a sever TBI while traveling in Europe. I had excellant medical care followed by five years of intense rehab and still today I find myself struggling to stay focused, remember words and rembering what I want to say when talking with friends. I still studder which makes matters worse. I'm in Theropy with hopes of getting more comfortable with my condition. Its not working.

I suffered a brain injury 15 years ago (a low blood sugar episode where I wasn't found for a few hours after losing consciousness). At first I couldn't remember anything longer than a few seconds but with therapy that improved. I have a loving family and great friends who did everything in their power to help me. My older brother even went as far as to stay at the rehabilitation center with me because I was uncontrollable and the nurses feared me (my apologies dear nurses, I was not myself). I still struggle everyday trying to remember new things and controll my anger. I know I will never reach the potential that I could have if I hadn't suffered this brain injury but I cannot change the past, only the future. Sometimes my brain fills with sadness that turns to anger. I was 23 when this happened and for a long time everything in my life was thought of as either before my brain injury or after my brain injury. I didn't lose my ability to figure things out, in other words I know I am still a smart guy with potential, but remembering specific details and conversations or directions is very, very hard for me. It was almost impossible for me to relate to people what I was going through. If you or someone you know is having symptoms like mine and you feel lost or they feel lost please contact me at lumpydumpling@yahoo.com (I had to create a new anonymous email address for this. It is real but I am doing this in my spare time so I might not respond quickly) I felt like I was the only one going through this for a very long time and I would love to help. This is a very scary thing you are going through. You probably feel like you are walking in the dark toward an unfamiliar sound, please let me be you flashlight. I am not a trained psychiatrist but I can relate more than they can. Best wishes and don't go through this alone

Hi, my name's Nicole I am 19 years old and I had a TBI going on two years ago, from an auto accident. I had a brain shear, which basically severed nerves in between my brain lobes. I was in a coma for a while and then spent awhile in rehab. I was very blessed with my outcome, doctors can't believe it, but that doesn't mean I don't struggle with a lot people don't understand. The first year was so hard, especially since my life went from being a very social young girl to some one I didn't know. Something I struggled with a lot for a long time. But I keep going up and down and emotion/mental feelings I don't understand. One I have struggled with is the feeling of not being a person....I don't even feel like I can communicate my emotions how I want to. I can't express how I want to. I know I overuse my brain a lot considering my condition, and I really think it is making my mental state worse. I am really just asking for other stories from TBI survivors who understand more than my psychologist does. Just about how you have helped yourself and pulled through, and what you went through. I would appreciate it!!

Hang in there. My tbi was 15 years ago and I still deal with it on a daily basis. For a long time I wasn't myself but then I realized that we all change over time and I am just the new me. I personally have a huge spot for you in my heart because there are so few of us who are going through this. Life is difficult but being that you found your way to this website and had the courage to post something tells me that you will be okay. If you need someone to talk to you can email me at lumpydumpling@yahoo.com

My TBI was 21 years ago. I wish that I had known about all of the support groups that are available. Thank you for everything. I currently teach, I made an Almost full recovery, according to the doctors, but I know that I will never be back to my original self. I have made peace with it.

Labor Day, September 3, 1979. Since my accident and all the physical mental and spiritual healing that occurred. I am still struggling with self-perceived and real inadequacies. At the moment of impact and subsequent breaking, severing a telephone pole as a passenger in a Volkswagon I was relieved of all future responsibilities. My life was turned over to a higher power. I was not in control anymore.

I consider myself fortunate to survive a 12 day medically induced coma and blessed with the ability to recover physically. Mentally I am always trying to prove to myself that the correct choice, the logical choice has been made. I struggle with short-term memory loss but can tell you things that happened in my high school of 5,800 kids!! 45 years ago.

I was told that the "real Mike" died in the accident. "If he lives he will be a vegetable", my mom quoting the doctor. I had to start over. So I did.

I went from a vegetative state to a complete physical recovery in less than a year. Rode my bicycle 65 miles attended 4 classes at a university. Reapplied and got reaccepted with a full scholarship to a west coast University.

I believe I was meant to survive for (a) reason(s) that are being identified daily. It has been difficult to accept that I am different from others. But we all are!!!

The terms "Head trauma" and "TBI" have legitimized the reality of those who have encountered such situations.

I encourage and reach out to those who are struggling to accept themselves or do not notice any differences to "keep on trying since it could have been worse".

Find something good that happened to you today and hold onto it.
God is the planner!

That is so good, Thank You and so good that you are an Encouraging Light for others. Yes, and I am still currently learning about Our Heavenly Creator's Plan,

I am in the Re-integration phase, having issues that are many times out of my control, and so in this process I have moved a few steps ahead, (sometimes a few steps back, however I have seen some accumulation of my effort). You are so right about "finding something good that happened to you today and hold onto it".

Thank you for your Awesome Reminder,
Blessings and Peace to you and all,

Sincerely,
Angela in Colorado

I agree with you completely. My injury was 21 years ago and well.

Hello Nicole, I had a double brain aneurysm in early February this year 2017, I'm so pleased I found this page, one thing I am learning is to be patient with myself, I was so used to doing everything bang straight away and stick to it till it was finished, one friend used to say I did everything at top speed, eating, talking, walking, driving, working, now I can't even think fast. I visited our local Health 2000 store and bought some Enzo Brain Recovery support must admit they helped lift the fog. When I get tired I stop what I'm doing and have a sleep, bliss, wished I'd done this years ago, does make a difference. I'm just coming to terms that I may not function to the same capacity that I used to. I have all my faculties, am driving again, do my own house work, and care for myself, even though sometimes I may not feel like it.
And having a great friend that supports you Is the best I call him my handbrake he has been truly supportive.
All the best Nicole, as you say it's all about you, retraining your brain, sometimes I tell my friends " that's it I've had enough I'm going home" most of them are pretty good and understand.

My boyfriend of 3 years had two strokes at 52 years old. We were living together. He is not the same person. Says he doesn't love me anymore.. why does this happen? So he's moving out to live in his parents downstairs apt. He can't walk and needs help with things. I have been his caregiver for 10 months now. I cry everyday, It's like he died. I'm trying to understand all this but it's very painful

Hi Karen, Please try and remember-Know his circuits are screwed up! Just like if his leg was mangled...time is needed to heal! As hard as it is...keep your Love/Friendship AND take care of you. I hope you have family-friends that share love for you?! I know this from both sides...I have had TBI's and my boyfriend of many years had one by lightening! It tore us physically apart for 4 years; yet as we healed separately we came back together! I don't know, as you don't what your future or his holds; but learning what you can...and finding ways to care for the pain, frustration that is present...will make you stronger, more compassionate (as you are already ) and an ally-asset to others you meet and him...in the scheme of Life! It is not easy! Many left with lack of understanding! Please Listen to your Heart for what you need! Wish you both Healing...Luv

I need help. It has been 30 years I've run from my TBI. I have had many breakdowns I started learning about the real effects of my brain injury 2 years ago. I have tried to teach and tell family, they just don't care. It's hard to explain you are never sure and second guess yourself all the time. That what is simple to them like choices is very hard for you. You are told you look fine explaining what happens to you all the time you hear that happens to me too or everyone loses train of thought, or I have to nap to... It's fustrating because they really don't get it. They compare themselves to you yet have no clue that in your head is like scribble signs. I'm sick it seems as soon as I get back up -maybe body gives out on me. Everyone thinks I haven't tried in life. My daughter says I need to get over my TBI and I've tried for 30 years not realizing t its a forever thing. I find as the years have gone on my body has broke down each time it's harder to get back up. I've been homeless and abused. I'm alone all the time because I just no longer trust people. I feel like it doesn't matter if I exist or not no one will miss me. My family doesn't want me around. I'm just a bad memory for my mother 2 out of 3 sisters barely talk to me. My brothers one is to busy and the other as also suffers from a TBI no one has taken the time to understand either of us. We both feel the rejection.
I just want to say to family of TBI Survivors you matter in how your family member heals. Remember they didn't ask for the brain injury it happened to them. They are navigating through a storm with a broken compass Be the light giving them direction to reassure them love, safety, and give them a place to call home in your heart. Don't leave them behind they already feel stuck and have low self-esteem because of the BI. Those of you who are care takers God Bless you. You are the reason that person will succeed. Those of you who have shut your door or can't be bothered shame on you, what if you were that family member? Where ever they are lacking instead of talking about them help them guide them and watch them fly.- everyone needs someone.

I can relate and tell us how we can help. My injury was only four years ago but people started running out of my life as fast as they could, or that's how it felt. Living with this cursed invisible illness (it's not an injury as far as I'm concerned) has had its moments of hell. It's getting easier and better in some ways but not without a lot of hell.

Hi... me too... 30 yrs ago... life seems to be more trying over the last 10 altho I had many issues over the 1st 20 i know I was never properly treated for the real issues as they stemmed from the TBI... that was never actually addressed Iam finally taking control with a dr who specializes in TBIs yet most issues I'm not sure of if they will change and I've already learned to cope with
What you've said about family is so true and it applies to others too... people don't understand... we appear ok from the outside and since the injury was so long ago we are expected to be fine... yet we have so many reprocussions others just don't understand and are labelled incorrectly... even if we try to explain only some may somewhat understand and then some who do they only do for a short while then forget or they just think we should be over it in time
And at this stage and in this world with so many even family being so absorbed in their own lives God forbid asking anyone to go out of their way and read a brochure outlining the basics... it's practically inevitable things won't change... unless we can somehow stand up and make that change!
Look at the recognition Susan G Koman made to breast cancer awareness... hopefully we can make a difference for others if it's not to late for ourselves by doing something so prevalent?
I'm new to the group and need a purpose... at 55 I've been out of work for 10 years due to fibromyalgia/TBI-related issues and have stabilized to where altho I'm not sure if I can do it full time or even at all unless I give it a try I have appliapplied for assistance for reeducation opportunities to reenter the workforce yet I don't know in what capacity yet...tbd
I'm too young to have this keep me down altho I'm sure if I don't push I could remain as is but I am just existing.... even if i can volunteer that would help... especially to spread knowledge of TBIs!
Let's keep positive... and the neck what others think... but if they say we're lazy or should be over it lets be knowledgeable ourselves and inform them politely... perhaps they'll learn

Hello! I have had many TBI's since a child! Most unrecognized, and even some So "incidental" with no outside wound-scar, that I never had rehab, never professional help and really no understanding of the invisible thinking challenges! No one gets it and/or thinks I am lazy-unfocused! I could scream yet I don't! I think from my Heart, do my best and yet clearly judged by even the two most close to me that I am not a financial success! It saddens me. People-friends are lost, nowhere! My connection with animals, nature...my own stubbornness and sense of purpose, let alone adversity to taking drugs...my saving grace! I feel people's-animals energy! Since young, a blessing and curse! Yet, no one knows-cares-understands how hard normal things are for me because I look normal! I share this because you are not alone! We: those with TBI, become aware in each our own way..on levels that those not affected cAn not fathom! I have helped-spoken to many as an Artist and Know fanning the embers of Our Soul-Spirit is crucial! I have a thought...a Project that has come out of your sharing and others' tonight! Thank You! Purpose with Heart Passion is necessary when the circuits of thinking are sketchy! You made a difference on my dark night! Hope the Light shines back on you...others! Luv

Don't give up! Find people who understand. Have you tried a support group for brain injury survivors? There is a Brain Injury Association in most states with lists of support groups.

Barbara

It's been 13 years since my TBI and I think now things are starting to happen with me. My bone flap was left in due to being absorption and a cap was made to cover the wound. I'm experiencing things now and wonder of the pieces of the flap may be contributing to my problems.
Anything would help right now.

Great article. Very to the point for all of us who have suffered a tbi... Hugs to all of you!!!

Hello,
I feel so jealous that most of the posters are doing so much better than my son. He had a subdural hematoma that required 3 surgeries. He was in a coma/vegetative state for 7 months.

He is still unable to walk. He is incontinent. He has a memory span of about 8 minutes. Every 8 minutes, he forgets what he has been doing and saying. He has difficulty with expressive speech.

The upside is that he understands that he was severely injured and that he is much better than he was 5 years ago. He is always happy and isn't angry. When we talk about this he is always saying, that yes he got hurt but he is slowly getting better. He doesn't give up.

There aren't many articles or postings about those who are this severe. Maybe others seeing this post may see that although the struggle is very real, that others are struggling even more.

Keep fighting!

Susan

Hi Susan,
My daughter's TBI was 5 and 1/2 years ago - she was a pedestrian hit by an SUV going 40mph - the brain injury was severe. She was in a coma for a couple of weeks and a vegetative state/minimally conscious state for a couple of years. Vegetative states are so strange but we always knew she was in there. She had developed hydrocephalus after the accident and had a shunt placed 14 months post injury. It took her 18 months from the time of the pedestrian accident to smile again - she started slowly but now she smiles easily and all the time! She is completely dependent on others for her care - she cannot talk yet nor walk but my sense through all of this is that basically she is happy. I still struggle knowing that at such a young age she had to go live in a nursing home and will likely not accomplish her pre-injury dreams. However, we are forever grateful that she had the will to continue living and we are so happy to be with her every day and provide companionship for her. We were always close and I can most certainly sense that she is comforted and happy when we are there. I think that we are still witnessing small improvements and I truly believe that she'll talk again as she has recently begun making new and different sounds.
However, I do wish there was more help for severe brain injuries. I am tired!
I hope that your son stays upbeat and continues to make more gains.
Stay strong!
Cecilia

Cecilia,

It is truly wonderful that your daughter has made it through such a difficult and life altering experience.

It is equally wonderful that you and your family are able to provide her with care and companionship.

However, I want to caution you that nursing homes have a documented track record for being host to significant abuse and neglect charges ranking from gross misdemeanors to criminal and felony.

Please be aware that individuals can and do slip through the cracks even in high rated institutions, and that the disabled are already in a unbelievably vulnerable state. Please take extra caution at all times, and learn about the signs of nursing home abuse - less smiling, avoiding eye contact, abnormal crying, ANY bruises or tender areas, excessive eye contact. Your daughter may be unable or even unknowing about the different kinds of abuse she Wil statistically be exposed to. Please take care to know and be vigilant for her. You may not personally always be there for her as the years go by, so I would urge you to speak with a Custody lawyer as well and ensure that she remains in the care of trusted family members at all times and in all circunstances. Many different 'authorities' have been known to make financial gains from hostile takeover of custody should there be moments of uncertainty, and unspeakable neglect and sometimes premature death are no stranger to being left in the custody of a faceless agency with no personal care or interest.

I don't want to unreasonably scare you, but this is the reality of health services today and for many years. And I genuinely believe you have your daughters best interests at the forefront of your heart and mind. I just want you to be equipped with everything you need to ensure her happiness.

Keep up the good work

Thank you for this post!

Thank You for having what it takes to publish this article. I can attest to every single symptom that you have mentioned. With a head injury at age 12, and no evidence of long term damage until I turned 18, it was then that I started having absent seizures for 23 years. On Oct. 27th, 2007, I underwent a right temporal lobectomy to cure the problem successfully. I was operable ONLY because the only sense on that sick of my brain was my short term memory. However, with a bruised brain and returning to work in a mere 6 weeks, it seemed as if it took forever to completely heal from the whole circumstances. I can honestly say that You and Only You will realize the genuine problems that you have, as you are the one dealing with them. Some people, especially family, could not and still can not deal with Who I became after the operation. I still work a full time job ten years later, and will NEVER FORGET Those Individuals that Stood By me and Helped me Realize that there WAS Going to be a Better Tomorrow.

Hi everyone I suffered from a head on Collision while riding my bike from my wife's house when we started dating and God bless her she has stuck by my side for over 9 years we started dating in February of 08 my accident was in may of 08 and God bless her she has stayed by my side through everything and I know I've not been easy and now after reading this Im fillaly breaking down to get help all the doctor's I've seen all they want to do is shove pills down my throat cause I'm not just dealing with a little bit of short term memory loss and a bit of long term as well but that's not the main issue it's my anger cause I'm getting frustrated with my self over simple instructions as well as compression as well I'm mean my comprehension was off a little before cause of me being ADHD but now since the accident it's worse I'm needing help cause over the years my beautiful wife also blesses me with three kids there ages are 8 6 and 4 and I really need support and help.

Thank you and god bless

Hi I myself suffered from a head injury may 28th 2008 I suffer from some short and long term memory loss as well as far as I've been told I get angry more often as well and I've noticed here lately at work it's harder to comprehend what I'm doing after a a week or two I can remember its very frustrating cause I'm 30 now with three kids they are 8 6 and 4 and I don't want them to think that the way I get angry so quickly is ok I'm trying to seek help and all these therapist want to do is shove pills down my throat and make me evan more useless to my family please I need help any advice will be helpful

Hi, being around children was one of the hardest things for me to handle and at the same time one of the most important things for me to be able to handle after my brain injury - and I only had one young son! The noise and confusion and immediate attention children bring are incompatible with healing from a brain injury.

From my experience, anger after a brain injury usually comes from frustration and/or overload at not being able to handle the situation or do what I want to do or used to be able to do.

My son was 8 and talking to him about my difficulties helped him understand but I needed as much help as I could get for awhile. My husband had to take over and spend alot of time with him on weekends. During the week I tried to do whatever I needed to do when I was alone in the house and then be sure to take a rest break/nap before my son got home from school so I could limit my focus to his needs. Camp was a life saver during the summer.

I missed alot but gradually I was able to participate in more and more family activities. Remember you are healing and you need rest to heal, even if you can't see a wound. If you were a marathon runner and you broke your leg, you wouldn't be able to run a marathon right after you broke your leg. We parents especially, run marathons in our brains all of the time. After a brain injury, you need to rest it, just like a broken leg.

I hope this is helpful,
Barbara

This is an excellent article.

People say that I am slow I can do things as fast as other people I had a hard time understanding thing but I can do it don't let people talk down on Outer people with the same promble I have.

I am going through the very samething since September 2014.
Thank you for sharing you experience.

My tbi happened a month before yours. My GP gave me a low level of antidepressants and I understand what I have and I work my way through the 'challenges'...with a sense of humor!! My husband and brother in law have been 'dealing' with my brain issues and have been advised (by me) to 'laugh off' my inabilities, they get me through the cognitive parts very well, too! I'm so lucky I perceive it this way!!!

I'd love to know of a support group here in Houston, Texas. My husband had cardiac arrest May 6th resulting in anoxic brain injury. Saturday will be 9 weeks - 3.5 weeks in the hospital & the balance in a neuro rehab/medical facility. Next week they remove the trach, and the following week he goes to an intensive neuro rehab facility.

It's so brutal to watch the expressions of full comprehension, cognitive & memory on his face, but his inability (at this time) to speak, chew, swallow or move his limbs on command. I see the frustration in his expressions, but also his sheer determination to give his all in each of the morning rehab sessions. So I'm completely proud of his achievements relative to what I'm being told others have achieved at this point - which is 3-4 weeks ahead in some areas, and a year ahead in others.

I got pushed in front of a car when I was six. I'm now 28, it just isn't easy for me growing up in a world where people look at you as a disease. I had a bad childhood and upbringing. The world is a hard place when people don't accept you. I live in Brecon Wales and growing up has been hard for me, iv been in foster care system and I'm still trying to build my life up. But it's hard when people don't accept your problems!

Have good friends in Brecon. I visit about every two years. My husband had a brain injury in Vietnam so I understand.
I wish there was a way to communicate.
Carol.

I am SO sorry for the life that you have had to endure! I truly hope that the rest of your life, you find happiness and solice for yourself!!
Yours Truly,
Christian

I agree totally with this article. My daughter had her AVM treated 3 years ago and even tho she has no physical problems, she does have some of the problems noted in the article, especially the fatigue. I am very proud of her, continuing to work as a nurse with a hard job and crazy hours.
Hi, I've just read your article about your daughter and my story might help. I had just graduated from Kingston as a Geologist in 1986 when I suffered a TBI from a car crash. I recovered physically quite quickly but was left with depression and tendency to become mentally ill when stressed. I learned strategies from physiotherapy, occupational therapy and through my own research about head injuries. I became a primary school teacher! I found I could help and inspire kids and because I used my participation in sport for recovery. I'm not saying that your daughter should teach but what I am saying is tell her not to underestimate her brains power to heal.

Help!!! My husband was severely injured in an auto accident. He will never be the same, physically, emotionally, or in any way. The physical injuries are so difficult and so is the pain. but even worse is that everything he ever loved doing is no longer possible. Things that he did for decades are now so frustrating that they lead to temper flares. He loves to work in his wood shop but it is so frustrating he is ready to give it up. I don't know how to help, encouragement makes it worse, is there help to bring him back????

Hi all survivors & angels helping encouraging. I was in a car accident with my brother I was 18 my brother 19 we were hit by a drunk driver going 80 miles an hr my side of the car . We were both ejected thrown into the highway. A truck driver stopped pulled me out , my brother was not so fortunate he was hit by some vehicles. Our accident my the front page of the newspaper, was very insensitive of them to mention after my brother was hit his body sat up . I am 51 yrs old now I spent alot of yrs in denial trying to be like everyone else it's getting harder to do. I don't feel people really understand me some try to make me feel stupid mental or lazy . It's very hard very lonely thank you for this site it's so nice to read about others that have the same struggles. People can be very cruel that's been hell for me
My roommate is a TBI Survivor. He is 35 years old and did not disclose this until after I moved in. He is quiet and accommodating; however, he early follows up with things that need attention around the house. He is completely unmotivated to do nearly anything besides watch TV. He looks lost and depressed. He has a full time job and owns two vehicles plus the condo we both love in. Lucky for me I have my own bathroom and my bedroom and bathroom ha s locks on both doors. He's not scary but his dispondence can be slightly outputting. He complains how unhappy he is but doesn't do anything. I'm not familiar with THIS survivors so I would give him a huge pep talk. Being a former teacher of special needs children with emotional difficulties, I felt his hesitancy was mental- and emotional-based rather than TBI. My heart breaks that I missed the "boat" on this one. I never knew TBI was so debilitating. Now I have to decide if I should move out or stay. I have to "put up with" some blinds installed and some blind's not installed and an air conditioner that is in desperate need of being serviced. Any help is greatly appreciated. Thanks...
When i hear you talk about her it blows me away!! I have a tbi from a fall and i am 56 and when you mention depression.....it is so surreal..In my case i had a fall so i messed up my head and my back...And the pain is horrible for most..I refuse narcotics for pain so i guess that is why i feel depression,hopeless and wish i could work at my same job that i did for 24 yrs..Just keep an eye on her and find the best help for her problems...i wish you peace..I have 2 daughters myself and they miss whom i was...hard times

Sorry to hear about your situation, I am 56 yrs old and 2 yrs into my TBI with whiplash. I suffer daily with pain and it worsens each month. I will not take narcotics as I don't believe they do much good but I do find some comfort in exercise especially yoga. My doctors have tried a few medications for the nerve pain but my nervous systems doesn't seem to take to them and I end up feeling worse. So, I am trying to find the new me and learn to live with "her". This is hard for me so I imagine it will be even harder for our families. Your daughter will love you always and we don't have to forget who we were, in fact we should celebrate it and be proud! Be strong and take every day for what it is.

All of you are talking about brain injury but you write so eloquently.  It's an inspiration really.  I wish the best for all of you.

I had my second TBI in May this year. This one is way different and I've lost a lot of my verbal and visual skills. I'm still waiting to get into skilled rehab to retrain my brain. However, I can still write well and way better than I can speak. I wonder if that is true of a lot of people with TBI.

This is so helpful! I was afraid that I am being ridiculously difficult, but I am normal. Sometimes I want a counselor to talk to, but I don't feel like they even get it. I want to communicate with someone who can understand that things just aren't as clean cut as they were before for me. I feel so alone

I hope you will get a counselor to talk to they might have some input you haven't thought of. Remember it's their job to help you find your way some towns have crisis lines for people to talk to when you feel alone. Good luck

You're not alone. Some of us are more functional than others. I feel frustrated being stuck between "normal" and "brain damaged" but life is what it is.

I see a common thread of people trying multiple medications and them not "fixing" the problem or the side effects being overwhelming. I've experienced this as well and found that the medications worked at first because my brain was so confused trying to renetwork itself and needed to calm down.

Think of it like this... your brain is like the earth and a meteor (a traumatic brain injury )has crashed into it. Every meteor is different, made of different materials and is a different size and shape. This meteor could hit anywhere on the earth. It could hit a in the middle of the ocean and cause only a little splash, or it could hit a major metropolitan area and knock out roadways and buildings, or it could cause the extinction of mankind. If it hits a major metropolitan area there is going to be this amount of time where there are fire trucks and ambulances speeding down the roads and nobody knows what's going on. Then there will be a time when there is the noise of construction going on all the time and you still can't use that major roadway to get where you need to go. Everything will be a little slower as your brain has to "take the long route" around this big hole in the middle of the city. How long that is will depend on the size of the meteor.

For me I was lucky that my family and friends pushed me, sometimes physically, to do what I needed. Many times I would lose my temper and use it to get what I wanted, to be left alone. And I was alone even with everyone there to help me because no one had been through what I had, especially the doctors because they were smart and I couldn't remember what I had for breakfast.

I got through that but still can't remember some pretty simple and random things like a new passcode for something or a new way we are supposed to do something at work. People don't understand because there are so many things I do remember that are so much more complex and I can't explain it to them. But I'm not alone, you are not alone, we are not alone.

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