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Resources & Inspiration for Life with Brain Injury

Welcome

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.

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39 Responses to “Welcome

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

  2. 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.

  3. 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 https://www.facebook.com/profile.php?id=100005385341164 I encourage you to contact her since she has had some profound changes for the better with a new treatment she is using.

  4. 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.

  5. 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.

  6. 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).

  7. 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 to.do.it. 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 with.me!!!! 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!

  8. 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.

    • 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. http://www.allbeginningsstartwithanending.blogspot.com

      • 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. http://www.gm1123.wordpress.com 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.

  9. MICHAEL

    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 http://www.allbeginningsstartwithanending.blogspot.com 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! :)

  10. 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:
    http://www.outskirtspress.com/tbihell (from Amazon and Barnes and Noble)

    eBook form:
    Google Play: https://play.google.com/store/books/details?id=XlBHif2Zu4UC

    iTunes: https://itunes.apple.com/us/book/tbi-hell/id451269776?mt=11

    “TBI Purgatory”:

    Good ol’ print form:
    http://www.outskirtspress.com/tbipurgatory (from Amazon and Barnes and Noble)

    Google Play: https://play.google.com/store/books/details?id=0CHd8KFbCAYC

    iTunes: https://itunes.apple.com/us/book/tbi-purgatory/id451270352?mt=11

    Kindle edition: http://www.amazon.com/TBI-Purgatory-Comes-After-ebook/dp/B004HYHJKY/ref=sr_1_1?s=digital-text&ie=UTF8&qid=1343581545&sr=1-1&keywords=tbi+purgatory

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

    “TBI Hell”: https://www.facebook.com/pages/TBI-Hell/281164047107?ref=hl

    “TBI Purgatory”: https://www.facebook.com/pages/TBI-Purgatory/163394650352983?fref=ts

  11. 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

  12. 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.

  13. 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!

  14. 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

  15. 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.

  16. 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.

    DELIGHTED!!

  17. 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- http://www.allbeginningsstartwithanending.blogspot.com

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