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Resources & Inspiration for Life with Brain Injury


Living with Brain Injury is an information center and a source of inspiration for those with an injured brain, and for their caregivers, families and friends.

Our brain is the most essential part of us controlling everything our body does.   An injured brain can cause problems with any function of our body such as walking, speaking, vision, balance, breathing, doing math, understanding what we hear or read, controlling the temperature of our body, controlling our emotions and just about everything else our body does for us.

How our brain works and how it repairs itself is still a mystery.   Medical professionals can do much to help in recovery but there is still a mystifying process that brings our brain back to a better place after a brain injury.   For me, the “brain fairy” has been that elusive thing that has caused the problems and healing associated with my brain injury.    I do not understand how it works but slowly things have worked better in this mysterious world of my brain.

Health and Medical Disclaimer

The information on this site is purely for informational purposes. This information is not intended as a substitute for professional medical advice or treatment. None of the information or products discussed in this material are intended to diagnose, treat, mitigate or cure any disease. The Author and/or publisher is not a licensed medical professional and is not engaged in the health-care or medical industry. Please seek proper medical professional advice for any matter related to your well being or health. All information presented here is only directed to persons 18 years and older.



70 Responses to “Welcome

  1. Barbara Castlow

    Though every brain injury is different, I believe there is some degree of healing in sharing and caring. It takes all of us

  2. Pratik

    My sister undergone brain aneurysm surgery in 2015. Surgery was successful she was recovering but within a week she suffers bleeding from same brain blood vessels so doctor operate her again. But this time her brain get infection and swollen. Current situation is she is completely bedrest not able to do any movement or not able to speak. She only open her eyes and sees us.
    We have tried lot of therapies, consult lots of doctor but we got same answer we need to wait.
    Any suggestions…

    • Please know that I am not a medical professional and my situation was not as serious as your sister’s. All I can offer are my personal experiences with having an injured brain. In my opinion, the healing is a long, slow journey with many ups and downs along the way. I know I felt the best and functioned the best in a quiet, calm environment. Noise can have a huge impact on people with brain injuries. For me, the ticking clock, birds singing, the sound of the water splashing while cars are driving through the water, most music, people talking – all would cause me anxiety and fatigue – it was difficult to function. My neuropsychologist told me that the “gating” ability for sound can be damaged which means you can not filter out the sounds you do not need to be paying attention to. Negative emotions displayed by people around you can also be a burden on the injured brain. Busy surrounding like a lot of knick-knacks, pictures, clutter and other things that are in the room around you can be disturbing because we have to visually process it. Too much talking around us can also be troublesome. The sound from TV and radios can be wearing. I’m not saying to eliminate all stimulation but be aware of the quantity, quality and the effects it is having on the person with the brain injury. Another thing is light – people with brain injuries often are sensitive to light. There were many times I would lay down during the day and cover my head with a pillow so I couldn’t hear the sounds around me and didn’t see the light. Florescent lights are not good for us. I think showing your love, being calm and gentle in your interactions with your sister is good. Also good to provide mental stimulation with an awareness that too much can be a burden. Try simplifying how you speak to her – for me, long sentences, long descriptions or explanations, complex topics were all too overwhelming for me in the first few years. Just remember that EVERYTHING our body does and EVERYTHING around us in our environment has to be processed by our brain – every little thing! People who have not had the experience of an injured brain usually are not aware of everything our brain is doing for us. There is so much work it has to do. An injured brain just can’t keep up with it. I wish your sister the very best and your family also. It is difficult being a caregiver or having to deal with this situation.

  3. I hope my whole story will fit here. I also an excerpt later down I want to post from a Facebook post I made awhile ago.

    Hi. So, I’ll just cut to the chase since I’ve explained this so many times. When I was in 8th Grade (about…3 years ago now?) for reasons I cannot even recall anymore, a classmate bashed the back of my head several times. I got a concussion, but like most uneducated people, I figured it would all be better after the concussion. Sure enough, it did seem to get better. I had an amazing Grade 8 year, and although I started noticing a fatigue in the first half of Grade 9, I figured it was because of how hard a worker I was. But suddenly, by Christmas…2014 would it be? Or is it 2015? Regardless, at that time I started noticing some strange things. I felt so…surreal. It felt like everything was some strange dream. I began failing classes for the first time in my life as I had to keep stepping out of class because things seemed sort of…weirdly overwhelming? I started Ninth Grade with an average of 98% for the first term, but by the second half of the year I ended with something like a 69? I couldn’t figure out what was going on. Doctors kept trying to diagnose me with tons of different things—ADHD, Anxiety, Depression, freaking DID near the end even. But none of these actually accounted for any of the symptoms I had. I was never anxious. In fact, I felt reclusive and…emotionless. I actually missed anxiety. But basically, feeling like this in the ended drove my parents to admit me to a mental hospital after I felt suicidal, and that’s where my Facebook excerpt comes in:

    “..The thing I’m worried about is, although I’ve been diagnosed with a brain injury, if my parents can tell doctors their view of me (I say they, but it’s really only one that has this view)before the diagnosis reaches them, my life will change and I will lose all freedom to be worth anything. I know this because…before I was finally shown what was really wrong from scans and such, I kept gwtting misdiagnosed with literally every mental disorder under the sun. But I’d look it up, generally talk with doctors about it and we’d agree that it was bullcrap and I had none of those symptoms. (They tried to tell me I had DID, the new name for split personality disorder near the end. I mean come on, can any of you seriously tell me I’ve exhibited traits of that? No, I’m always William or Billy, with the same personality)  And well, near the end before I figured out what was really wrong, I was admitted to a children’s mental ward for the second time in my life. It was…a pretty terrible experience, and if you’re triggered easily I’d avoid the rest of this paragraph. There, they treated me like an animal. I called out for help, because I generally wanted to not be depressed and feeling physical pain anymore, but the way they run that place? They aren’t trained at all. They just watch you, and if you need to talk to someone and feel suicidal (which to be honest, I was but can you blame me after 2 years of this stuff?) they simply call the guards if you don’t shut up, lock you in a room (and if you’re suicidal like I was, without any clothes but your underwear, in a cold cold room) and left to lose your mind, told to wait for the doctor. If you WAIT for the doctor, you want to badly tell him you want to fix your problems. He tells you very vague things and says ok see you next time and you have to go another 12 hours alone, losing your sanity. Their goal is to get you out as fast as they can, while also keeping you as long as they can. This means they don’t help you with your problem, and just tell you to stop being depressed or _____ illness. This was obviously impossible, since it was a brain injury all along causing the REAL pain and disorientation that caused me to be depressed, so I left feeling worse than before and probably with PTSD! (I wouldn’t know as I refuse to ever see another psychologist again :’) )”

    Yeah. It’s been rough. I’ve actually dropped out of High School now as every time I try it I end up only lasting a few hours before needing to go home because I’ve passed out on the school floor from exerting my damaged, fatigued brain. It’s okay, as my plan was to create something more with my life than just getting a job and surviving anyway—I don’t know what yet, but I want to make a career from creating something unique in the world and showing others something cool. I can’t draw, but I used to be able to write really well. I want to make a living by creating like a video game or…hell, even maybe succeeding in the YouTube gaming industry, althougj that’s unlikely as heck.

    I wanted to do this, but with the injury, I can’t even think detailed anymore and…think abstractly like I wanted to. i feel so weak nowadays, unable to even get out of bed as no matter how long I sleep I wake up just as tired as before, and am so fatigued but have to fight it. I…can’t even get any hope anymorr as this is all so surreal and I know it will never end, even if it SLIGHTLY improves a litttle bit over the years. I will never feel human again…haha. I guess I’m just hoping for a bit of…support somehow. Even though everything feels so meaningless.

  4. DonnaMarie Paquette

    In 1974 I had severe Migraines, In 1980 I was in car Accident then 1989 I fell from ceiling fixing a curtain fell 6 feet Landed on back of my head , I broke my collarbone, elbow and wrist I fell because I had a tumor growing . In 2005 I went to ER In an Ambulance My brain was swelling Blood was coming out of my Nose my brain was swelling i had several strokes the scans showed a extremely large Mass tumor it was growing for years it was under white Matter a very deep tumor they told my family they will have to remove the skull Bone 8 hour surgery with Strokes and i may never survive. After six weeks in intensive care I had to go to the rehab in relearn everything all over again I have walk talk brush my teeth everything , I have a titanium plate in my head ,The Brain Tumor that i had was Intraventricular a deep tumor a very Large tumor and the one on my brainstem they were genetic they were in my celles I had a rare Intraventricular tumor they are especially significant because they often obstruct the flow of cerebrospinal fluid. When the flow of cerebrospinal fluid is blocked, it is a condition known as obstructive hydrocephalus, the volume of fluid in the ventricle increases, placing pressure on surrounding brain tissue and leading to headache, nausea, visual disturbances and death. I was in a coma they told my family i may never wake up again , i was dyeing .The brain stem tumor i have now is the same name it is now in my brain stem, 5 brain Injuries, 3 tumors, MY Tumors made it a Traumatic Brain Injuries, Thymus Tumor Cancer Vision Impaired in both eyes with blindness, Hearing Impaired in both ears with deafness,and Expressive aphasia, I have Damage to the central Nervous system, I had 31 days of Radiation treatments 5 Days a week, I will always have a brain stem tumor as they could not shrink the tumor

    I have a positive mind set
    I’ve learned to appreciate my struggles in life because I believe there’s something beautieful in a struggle. If I didn’t have challenges in life I might never have learned to appreciate the small things in life,there’s beauty in struggle because at that point where we feel weak and helpless some inner part of us that we never knew we had emerges from the depths of our soul and pushes us to grow.that is what i learned in life, and to believe in me.

  5. Grace

    Hi. I found you while searching for someone who may be struggling with something similar, especially during holiday season. I have my own apartment, but my mother has moved to my state since my injury. I had forgotten how incredibly judgemental she is as she has told me my furniture needs to be replaced, apt. needs new coat of paint and new carpet (I’ve been here 10yrs). I focus on matters of the heart and spirit and try to express that in some art form. Unable to work and living on disability, I am grateful on what I have. I get guilt trips from her that she is all I’ve got. Does this mean I have to accept her embarrassment of me? Of being ‘low-class’ due to my financial status? When she is not implying or saying, I run all the negative comments in my head. I have a constant uneasiness that I am doing something wrong ALL the time. I guess who I turned out to be is a huge disappointment to her.

    • Hi Grace, Thank you for visiting. I’m sorry to hear about your situation. Everyone has their own priorities for living their lives and I think other people should respect that. Now that you have a brain injury everything is much more difficult, I’m sure. I always felt that my energy reserves where strongly affected by mental activity, physical activity and also, very strongly, by emotions. Any negative emotion seems to add to our burden and becomes a major drag on our overall energy level which is so low and fragile after a brain injury. Your Mom needs to understand that now is not the time to criticize you but to provide support. You need to be able to feel comfortable in your own home right now. A brain injury is not easy and most “normal” people do not understand. Maybe she needs some education as a caregiver of someone with a brain injury. And that it is something that doesn’t go away soon or sometimes ever…

      • Amanda

        Thank you Mina.
        Yes, my energy levels are like yours too. Affected by mental, emotional and physical activities. The thing that is the most frustrating is trying to explain and educate family of things that are most challenging and are overlooked. I just have to do the best I can with what I have from an honest and loving heart. Can’t worry about what can’t be changed or understood by others. However, channeling that energy into positive creativity is awesome. I am learning to set boundaries so I don’t have to watch the same bad movie over and over 🙂

        Happy Holidays to you and yours!!
        Thank you again

    • Sylvia Lawing

      Grace-Sorry you have to add this to your difficulties. I have a tip for you. YOLO- You Only Live Once. Would you watch a bad movie over and over? If something or someone is detrimental to your well-being (peace, joy, spiritual happiness), you must address it. If I won the lottery tomorrow, I would still shop second-hand stores. I would still wear vintage clothes. I would still prefer a good hot-dog to steak. I love to up-cycle and use old things instead of throwing them away-I’m an artist. I don’t have a lot of money (but, I have enough to meet my essential needs).That does not make me ‘low-class’. I doubt that you are ‘low-class’ either. You just have a different value system than your mother. Girl, she is not all you’ve got. You have your wonderful brain.Yes, you heard right. You have a love of art. You have a caring spirit, You have a home that you like. And, since it is yours, you are the only person it needs to suit. If you are uncomfortable around your Mother could you set some boundaries? If she continues to say hurtful things, tell her you have something burning on the stove. That is a southern lady’s way of telling you to excuse yourself from the situation. Stop the movie. You’ve seen it before and it doesn’t leave you feeling good- so leave the theatre. It is really simple. Just say, “Mom, I love you and I hate to cut our visit short,but I have to…………..whatever. YOLO-you owe it to yourself to take care of you.
      I am a TBI survivor. My accident was in 2008.I had a brain injury blog You can read the blog but it isn’t still active. Google would not return it to me after I left it idle for months to deal with cancer last year. You can catch me on Facebook. I wish you well:)

      • Thanks, Sylvia – that is a great response for Grace. Thank you for taking the time to share this.

      • Amanda

        Thank you! You are AWESOME GIRL! I love it, all you said. Yes. YOLO!!!! My new word, motto. Cool 😉

        Actually I am an artist also and creating is breathing for me. Hey, I may just need to put these emotions into a painting. I also loved your comment about the bad movie. I really needed to hear that! Boundaries and not knowing what to say when I need to cut it short were leaving me blank. Got something burning on the stove…. 🙂 I am sorry to hear about your cancer last year. I can’t imagine but hope they got it all. These concerns of mine are trivial in comparison.

        Happy Holidays!

        • Cancer free:) Life is wonderful. Hope you are enjoying the holidays. I would love to see your art. I understand how you feel about it. I get lost in my writing. I hope to continue writing about my TBI. We must get others to understand.

          • Amanda

            Love your blog and all you’ ‘ve done is inspirational. I really hope to stay in touch. Can’t day enough how you had the right words, real words, at the right time. Okay, THANK you, you are so appreciated by a woman out here somewhere 😘
            LOVE and LIGHT

  6. Eron

    My name is eron and I have a sister that crashed. She was asleep for 11 days.right now she can hear us ,mover her eyes ,move her hands but not much,she presses my finger I’m going see her after work. She still is the 12th day.wish her the best and prayers.

  7. Renee Morgan

    I have suffered for seven years. I hate it. Jesus loves me. I don’t ever have a feel good day unless its with good meds. Car wreck was bad. I can’t handle much noise at all. It’s a lonely life. But Jesus is close and is my good friend and Lord. I miss someone to understand me. This is good

  8. Christine

    Hello. My husband suffered a tbi in a car accident almost 2 years ago. He now suffers from depression and anxiety. We are getting him back on the right track with diet and exercise and a routine. He’s been seeing a psychologist for 6 months now. His injuries seem milder than most I have been reading about. I’m really trying to make sure his plate isn’t too full as that is a big trigger for him. What else can I do to make his quality of life better for him.

  9. This was such an incredible story. Thanks for sharing!

  10. Tanya

    Friend of mine has left temporal and frontal lobe TBI, lives alone, and recently lost her last family member who was assisting her. Many of us would like to help her stay independent but find we are lost and confused as to her needs. We seem to be creating more frustration and anger in her. Counselor suggested finding information (suggestions, checklists, etc..) how TBI survivors live alone. Any suggestions? Thank you in advance.

    • Nancy

      As a brain injured person… It is important to me for people to help me in a way that best lets me keep my dignity as an adult, and my independance, as much possible.

      Ie. Many Drs suggested a morning getting ready routine with a star sticker chart for tasks I’ve completed (bc I forget if I’ve brushed my teeth, put on deodorant, etc). I refused help and was frustrated with all their solutions to my problems. It was humiliating and demeaning to me that I should use a sticker chart, or any chart for that matter, when I am 40 years old and a grade 2 can remember their morning routine, so I should be able to as well!!

      Then… One Dr suggested I start my morning routine with a make up bag, and empty it every morning onto the counter. Then when I brush my teeth, I put my toothbrush in the bag, etc. and continue on until I’ve done everything in my morning preparation hygiene routine. I said “great idea – I can keep my independence, and dignity with that bc stickers are for elementary grade kids, and I’m an adult”. ….But I still didn’t get a bag or start this new routine, bc I had hope I’d remember better tomorrow. And I felt frustrated that I needed a bag in the first place.

      So after a couple months, the Dr came to my house with a bag. And she went through my routine in my bathroom, with me. I’ve used the bag solution ever since, and I am far less frustrated.

      Since, I’ve also taped a calendar inside the cupboard beside my dog dish. Previously Id spent ridiculous amounts of time with frustration and mental stamina trying to remember if I fed the dog! I feel so much better with a calendar now (and no one can see it but me). I’ve also started using a doset pkg for medications! Way better! …But all of the solutions took a couple years for me to accept. I was angry, sad, frustrated, hopeful…and in denial. I still am to some degree. And all of this is very affecting on anyone’s mood.

      My mood has begun to lift now though as I’ve found new ways to keep independence, dignity, and more gas in my tank for other things that have meaning to me, gardening, music, etc.

      All in all, I’m suggesting ways to help organize your friends life in ways that maintain her independence and dignity. Then, encourage her to connect with her community. Find professionals from the local brain injury group to help you with this. Maybe find a peer support group for her. Support means the world to a person who feels alone. And brain injury can feel very lonely.

      Sounds like you’re on the right track in trying to understand what your friend needs. Keep communicating with her about it:)

  11. jay Hendry

    Is there a place or places that anyone knows of in Philadelphia pa to take someone who has a very bad tbi.. And that he doesn’t communicate with you but he does know that you are there please help.

  12. Courtney H

    hi I have a three year old son who is in the icu he got a cord caught around his neck and had a lack of oxygen to the brain the doctors did an mri and found that he had damage to the basal ganglia right now hes breathing on his own with a ventilator but long term what am I looking at some nurses tell me childrens brains are plastic and can work miracles unlike adults so im really worried can you please help me? thank you so much for your time

    • Sorry about your son I had the same problem to live with a brain injury it is the harder things to deal with there are programs our there depending on the state in in Ohio and riverside out side of troy is helping me you can do that and set him up as well as a provider too

  13. Been reading a lot about what to do after this sort of injury. Thank you for sharing your thoughts!

  14. Than!k You so much for the information Sylvia. I will take a look at the link!

  15. I don’t sleep either. Maybe four hour at the time if I am lucky. My doctor prescribed Ambien. I feel groggy the next day and my eyes look puffy. One night I took it and woke up the next morning with a damp towel on my head. I had taken a shower and washed my hair and had no memory of doing it. I am up at all hours. My mind won’t shut off.

  16. Hi there, my name is Margie. My home was ran into by a drunk driver in a pick up. In turn, he hit me. I have always viewed this experience as being happy to be alive! And thankful that it was me and not one of my children. I suffered many injuries, the worst being TBI. I developed a seizure disorder due to this injury. I take medication and have been seizure free about 4 yrs. Which wasn’t the case for quite some time. I have a sleep disorder, which I’m told from many tests is a direct result of head trauma. In finding your blog. I’m wondering if anyone that may have this issue would have any ideas or helpful information. The doctors response is medication. I really want to sleep, but I dont want another medication. Thank you so much for your time. Margie

    • minakitty

      Margie, I did not have the same problems from my brain injury as you so I can’t tell you what my experiences were, however, I have been following many other survivors’ stories and one stands out that may help you. Debbie Wilson shares her experiences on her Facebook page I encourage you to contact her since she has had some profound changes for the better with a new treatment she is using.

  17. danielle

    Sweetie, if I were you Id run. If he’s yelling now, what makes you think he will be nicer later.
    Brain injury or not, its not cool for you and especially your kids. And honesty, we may never get better from TBI. There are no guarantees, no medicines, no surgerys, there is nothing that can fix brain damage. Its brain damage.
    But as a woman speaking, don’t get into this relationship, its not safe, especially if he can’t handle himself over a phone having a conversation. What is he going to do when he id physically there and he loses it???
    Do you want that??
    Be wise, think of your kids safety first. After all, they should come first, not some guy.
    Best of luck to you.

  18. Trisha

    Hi. I need some advice. My boyfriend and I have been dating for 9 months now. Hewas in a car accident about 4 years ago and was in a coma and has a TBI. He is in Germany in the air force and I live in CA with my 2 young daughters (ages 2 and 4) in January my bf got in trouble and is getting kicked out of the air force now and moving home (moving in with me) next week. Although I knew my bf a few years back before his accident we had no contact till after my divorce a year and a half ago I had no idea about his TBI until April when he came home for a visit and I met one of his friends he met in therapy. That week he was home we drank a few times and he lost his temper pretty easily. It wasn’t till we were with his mom and sister that he lost his temper towards his sister and I calmed him down that his mom and sister both later pulled me aside to tell me more about how he has changed since his accident and that I was the first person they ever seen be able to calm him down that fast. My major is in psychology and after he left back to Germany we started learning more about TBI’s. I was worried to bring it up to him over the phone because I didn’t want him to think I was attacking him. I wanted him to see my face and emotions when I bRought it up so I waited until June when I went to visit him for 3 weeks. It was an extremely rough 3 weeks. He lost his temper a lot and that’s also when he found out he was getting kicked out so he was under a lot of stress. I was able to talk to him about it and the last week I was there was a lot better and was able to see him struggling to not “explode” when he would get mad. A few weeks after I came home we got in a huge fight and I ended up breaking it off with him. After he calmed down we were able to talk and the next day he went to the doctor and got some meds. Since he has been taking the meds or relationship has definitely became a lot stronger and he is so much more easier to communicate with. However the 2 times he has ran out of his meds he has gotten mad at me over something ridiculous and things seem to go back to how they were before. So my question is, is there any hope things can stay better? What are the chances of him being able to control his temper in front of my kids when he doesn’t have his medication? How do I talk to him about it if he seems to be a little hesitant about stayin on his medication? And really is there anything else we can do or get help from? We are not married but I would love to go to counseling with him or whaever it takes. He is a good man and Has the values of commitment and family that I do and he is someone I really do want in my kids lives but their safety of course comes first. He has never been abusive just yells but it still can hurt me sometimes.

    • Hi Trisha,

      I don’t have the expertise to respond to your questions but here are a lot of links about anger from a very good site. You may find some answers from these articles:

    • Matt

      I had the same issue with anger and out bursts following my TBI and it lasted for years. it wasn’t until I realized that the only person I was angry at was “myself” that I truly was able to get rid of the anger. cymbalta helped tremendously many people with TBI me included need help with medications, ecspecially refills, I would go to counseling and help him with his medications. I would not “run”!!! I never had anger problems before my TBI and despite the anger out bursts I had for 5 years after, before medication, I was never violent. If he was a kind person before his injury with counseling, communication and time he will be again. Having a TBI is like watching the person you where before the TBI die, it is extremely difficult to deal with the loss of your self. loved ones that learn about TBI and don’t “run” are a true gift from God, I think your children could learn a lot of tremendous life lessons and compassion from this process as well. I pray you are still togther and happy!

    • Louise

      Hi please dont put yourself & kids through this. My father suffered from explosive anger disorder (no TBI) and enduring the verbal and physical abuse of my mother, me and my brother haunts me to this day. Walking around on eggshells all the time trying to not do anything “to make him mad” is no way to live. I did it and trust me, no matter how lightly you tread he will explode.

  19. Ana Bobinac Georgiebvski

    Hello everybody,
    As Rehabilitation Medicine Physician, I have met people with various severity of brain injury, as well family members, and various clinicians. I find COMMUNICATION as a most important goal to deal. All around the person with brain injury should learn communication skills and use the language appropriately applying maximal effort to understand unique needs of person with brain injury and take the time, as much as needed for both, listening and giving feedback (answering).

  20. danielle

    No I never had therapy, Ive had nothing. (I wrote more early but it didnt go threw. )Ive been alone doing this. No insurance, no money, no help. Plus I lost any friends or aquiances I had. I lost literally everything. My brain is too sensitive to mediciations that I cant take antidepressants to help.bring me out of this deep depression. Ive honesty lost all hope. I just.lay here 24 hours a day. Im afraid to leave my house cause dont know how brain will handle it. It overwhelms me. I dont feel like a woman no more cause of all weigh gain. No gym program will touch me cause of brain injury, unless I do.private training but I cant afford that.
    If its not 1 thing it is another with this injury. I dont feel like normal person, I feel retarded, like I have mental issues. I.was very smart before. Best multi tasker, could solve any problem. Now, i can only do 1 thing at a time in pure quiet and it can take me up to 1 hour Like write this note.
    Who would help someone like me?

    • TBI0104

      Hey there, i just want you to know your not alone, and i know you’ve heard that a million times like myself! I suffered a TBI almost 6 yrs. ago from a fight at a bar,go figure right … now the whole right side of my skull is titanium from surgery. Im on disability, and do the same as you hide in my house alone all the time,isnt it funny how “friends” just seem to vannish!. Even going to the store is torture. This is my first time even reading and replying to anything,only in search of some kind of answers i cant find myself! This is a good way to communicate for now but as im sure for you it gets old. Good luck too you and God bless!!!

      • danielle

        Thank you so much. So please tell me, how are you doing now? Have you noticed any improvement over these years, or are you just learning to live with it and accept it?
        What is so hard with this disability is you look normal but you totally are not. Im have some scars on my face so you can see Ive had some facial trama. I have metal all in my face to from my 1st brain injury. This is my 3rd TBI, thid one hit me hard though, not pulling out of this one. So I lay in bed and pray for a miracle. Only Jesus can heal brain damage. Yes, I lost everyone, people dont know how to deal or react to us in any way. I was at a store recently and this lady was telling us about these therapeutic oils that help people with certain elements, so of course, I ask her, which one helps brain damage, and of course she didn’t know what to say and quickly got anyway. Even at my church (when I go anymore), Im known as the woman with brain damage. And if I try to make friends or ask another lady for their phone number they run away. No one wants to be our friends, its like we arent good enough or they think we will be too much trouble to deal with.
        If.I ever had any pride in my life, it has definitely been deal with.
        I must say, with all this thats happen I feel worthless, like a.scum bag that no one wants anything to deal with. And ya know, thats just the darn truth. I dont have any health insurance so I see no doctors, can’t afford them and when you have no insurance your screwed. So you learn to live in the hole. It is what it is. The only one who can save, heal, and deliever us is Jesus Christ. He’s my friend, He loves me and He wants me, He’s not ashamed of me cause Im broken now. I dont know what or how I would function without Him. Id definitely would of blown my brains out by now, thats for sure. But He, my Savior and friend Jesus, He pulls me through everyday. And some days He literally has to drag me threw the day, but He’s here. He promised never to leave or foresake us, and its true, He’s true. He’s all I got. If you dont know Him, just ask Him to reveal Himself to you and He will. He is Real, He is alive and well and He.loves you and He wants to help you too. He especially loves the broken, the ones no one elses wants, we are His favorites. And I believe with all that is within me that He can heal our brains. I just know, that I know, that I know, that the God who created all things, the earth is His foot stool, we are His children that He charishes and.loves, He most definitely can totally heal our brains. So why dont you all believe!!!! Faith is powerful, and when we all believe together it becomes stronger. So believe God.wants to heal you, every part of you. I will believe with you!
        What do we got to lose?
        There’s no surgery, no pill, no drug to heal brain damage, but theres Almighty God, and He’s in the healing business. Wow, this is going to be cool. Im excited to watch what our Papa God does!!
        You are the Lord, that healed thee, You are the Lord, my Healer. You sent Your Word and healed my brain, You are the Lord my Healer!!!

        • TBI0104

          Wow thanks for responding so fast,like i said this is new to me! Its so nice to see that you love the lord so much, cause i know hes the only reason im here still. My best friend and i have bible studies together over the phone almost every night. To answer your question, i guess i have just tried to live a normal life but like you said were looked at as nothings wrong! Everyone says if you didnt tell me you had a TBI they would have never known. Im an electrician and since after i got out of the hospital i have had and continue to have grand mal seizures, which makes me a walking liability. But aleast im walking right! My name is Ben, if you would ever like to share the gosple or simply just need someone to talk to please call! My number is (407)272-3752
          I know talking really helps me and im sure even more with someone who can relate! Take care and God bless you!

        • Renee Morgan

          Wow you think like me. Our situations are alike. Wish we could talk

  21. danielle

    Hi, I just found this site. I need help. This living with brain injury is soooo hard. Im not me anymore. Im crying now cause Im so over whelmed and no one understands..but maybe you all do. I pray every night asking the Lord to please heal my brain. Its been almost.3 years. I thought I would be better by now. Bright lights effect me bad, Ill have to wear.sunglasses in store.
    I cant be around alot of people. I cant be around noise at all. Or I have a melt down where my eyes blink like crazy, my face twiches, I cant say words, and I loose balance. Is this normal??? My personality changed, Im not sweet me no more. Its a mess. So I stay home alone, in a quiet enviroment. But thats no way to live. I want to live life but I.dont know how to when my brain wont allow me to.

    Does anyone understand?

    This is my 3rd brain injury now, is that way its sooo bad??

    Im sorry, I just at my wits end here. Im tired of crying but what do you do. I dont know this new person who is in my body, she is nothing like how I was. This is scarry ya know. I never thought this would be how my life would be. Its sooo freakin.sad.

    • What you describe is very much what I and I’m sure many others with a brain injury have experienced. Looking back at my recovery I can say I was still having many problems after 3 years. Are you still getting any rehab therapy? There may still be things that can be improved for you through rehab but remember it all takes time for the brain to rewrite. Be persistent in getting further treatment you may need. For me visual and balance issues were not completely addressed with treatment until 3 or 4 years after my injury. Sometimes these problems are not diagnosed as they should be. Keep doing things you are comfortable with but push yourself to always keep doing a little more. I looked at everything I did as therapy. Everything was difficult but eventually things got better very slowly.

      • My TBI was in 2008. I am still struggling with so many things.I had to repurpose my life. Lost my job,now l design websites and do freelance writing.

      • Gailann

        I like what you shared . Seeking therapy for that is what is helping me .
        I am 59 yrs old and i was in a automoblie roll over . Over a year ago .
        I go to Vision therapy and Occuptional , and even Speech . This is helping me a lot .
        I have a case worker who see’s what i need .
        My vision was and is still double .
        My memory is good . But my thinking process is slow or i can not bring up what i need to say .
        I loose balance some.
        I have exploding head pain. I tell non T.B.I. to drink a frozen slurp and see if head hurts . That is my head pain at times . So i am on meds lyrica and fexril n mobid .
        Hope i helped some one .
        It takes time . Friends just do not understand . So oh well . Cry inside and do remember God is there for us. Amen.

    • I am doing some research on the different ways people are affected by TBI. I can relate to your post. The public and the medical profession are not aware of many of the things we suffer. For instance,I went to my doctor with a log of by body temperatures.The were consistently below normal range. He didn’t even connect it to a TBI.Now, I have become increasingly bothered by my brain’s inability to control my body temperature. I am shivering one minute while covered with blanket,socks and jacket and two minutes later, I am hot.I can sit out on the porch all wrapped up when my family can’t breathe for the heat and humidity.This is just one of the many,many,many things I deal with. I want to speak to others to try and put the pieces of the TBI puzzle together. I want to hear your stories. Please check out my brain injury blog and let me know about your experience withTBI.

      • Hi there. I went check out your website but could not figure out how to leave a comment in regards to our personal experience with brain injuries. I wrote a blog on my WordPress site. It helps writing about it, bc I feel it so intensely. A lot of it is survivors guilt, but their are things I deal with with my tbi. You are welcomed to check it out and/or follow my blog. Thank you for your help and research on Tbi’s.

    • I understand. I am trying to bring about public awareness. Please contact me on facebook page. I have great resource materials.


    Hello everyone. I’m Michael. It’s great to get online and find site with worthy information about great information. I have suffered two TBI episodes, by the grace of God, I’m still here.

    • Getting the information out to the public is important. I suffered for two years with no resources. Then I got on the right path. I have made some awesome discoveries and I have received help that I didn’t know existed. We have to come together in our support of each other. Check out my brain injury blog at I would like to hear more about your journey with a TBI.

    • 2? It’s sometimes difficult for me to handle the effects of 1. Everyday is a new day to do better and be better. and be so proud of our accomplishments. Best of luck to you! 🙂

  23. I suffered a severe TBI in a bicycle (me) vs. pick-up truck (not me) collision. I have written two books on my TBI. They are “TBI Hell – A Traumatic Brain Injury Really Sucks” (Truer words have never been spoken) followed by “TBI Purgatory – Comes After Being In TBI Hell.” If I get to TBI Heaven, I’ll write about that, but don’t hold your breath. The books are in no way medical. There is very little, if any, medical jargon or psychological mumbo-jumbo in either book. They don’t offer tips or tricks on how to live with an injured brain. I rant and rave about a lot of “stuff,” more so in “TBI Hell” than “TBI Purgatory.” But it made me feel better so…it might make you, the reader, feel better too. “TBI Purgatory” is much more up-beat than “TBI Hell,” that shouldn’t come as a big surprise. The following links are where, and in what form, my books are available.

    “TBI Hell”:

    Good ol’ print form: (from Amazon and Barnes and Noble)

    eBook form:
    Google Play:


    “TBI Purgatory”:

    Good ol’ print form: (from Amazon and Barnes and Noble)

    Google Play:


    Kindle edition:

    Each book also has a facebook page: (make me feel good by hitting the “like” button)

    “TBI Hell”:

    “TBI Purgatory”:

  24. Hi Mina,

    Our iPhone/iPad app, called It’s Done!, has become a helpful tool for brain injury survivors worldwide. It helps users recall whether routine everyday tasks are done: Did I lock the door? Turn off the stove? Take my medication? Aids memory w/visual, tactile, and & audible confirmation. It even notifies loved ones/caregivers when tasks are done.

    See our website: ItsDoneApp. com to learn more. Or visit the It’s Done! app on the iTunes AppStore.

    I’d welcome your feedback and let me know how I can be of service.

    Warmest regards,
    A.J. Lester
    Brain Injury Survivor
    Creator, It’s Done! App

  25. Marty Acree

    A magazine article featuring Barbara Stahura lead me to this blog and many other links this morning. I’m a TBI survivor of 37 years. Now 55 I wonder about my future and will fight like hell to avoid dementia. I hope to live to a ripe old age (if health remains). It is nice to find so much support is available and sometimes affordable. I’ll do my best to return here again.

    • Thank you, Marty, for visiting my site. I’m a couple years older than you and I have the same fear you do about dementia being more of a problem for someone with a brain injury. I’m trying to do all the right stuff for good brain health so I know I’ve done all I can. You have to stay active – physically and mentally. Most of the articles I have in the Brain Health section stresses the importance of physical exercise in keeping your brain sharp as you age. I keep seeing this over and over again in things I read. So go out and take a fast walk or something.

  26. Lisa

    TBI/ABI no matter how it happened, we all have the understanding of what it is like to .live with our new brain. The symptoms usually are very different and unique from one another.
    I find it fascinating, frustrating, sad, and enlightening all at the same time as my brain heals and re-wires around neurons that no longer work.
    Glad to have found you all on this journey!

  27. sarah

    Hello, i have been living with a acquired brain injury for 27 years now after a illness at 15, i find as i get older things get harder. Glad i found this site.

    Sarah x

  28. Janice

    Hello, although I have ABI, very interested to read this

    • Any brain injury – acquired or traumatic – results in many of the same problems, therapies, etc.

  29. Kate

    I too am glad I have stumbled across this page. I am 23, suffered from a TBI August 2005.. still living with the aftermath everyday in some way or another. I look forward to exploring more information about others who have suffered. Going to a doctor is one thing, going to a support group or similar is a whole different thing.


  30. Rebecca Mckinley

    Am so happy I just stumbled across your eloquent words – My 4 1/2 yo daughter suffered a TBI in november 2011 – I really have been searching for older survivors who can help me understand what is possibly happening for her. Her language is limited by her age but she does say that her head is different now – that it is itchy inside. Her pronuncation of words is deteriorating, she has very little short term memory

    • I hope you visit me again. I hope you’ll find more useful information as I write more posts. I have a lot I want to say.

    • Kristin O.

      Rebecca my daughter suffered an acquired brain injury at 4.5yo. This happened Nov 2010. She will be 7yo in about a week.

    • I too have a TBI. I am 62 and my accident occured on 2008. I understand your searching. I really had to fend for myself in finding resources at first. Now, I try to help others to find their way with coping skills,strategies and resources. I totally understand what your daughter says about her head. I discribe it as feeling as if ants are crawling on me. My short term memory is affected too. I talk about this and much more on my blog-

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