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

I'm reading these stories and I can relate. I got a severe TBI October of last year in 2016. I was out one night, had way too much to drink(which I shouldn't of been doing in the first place) and decided to go for a walk on the road because I needed some fresh air (which I don't get because there's a sidewalk along the road) and was hit by a car because it was nighttime. I had multiple other injuries but those have healed or at the end of healing but TBI has been the hardest. I walk with a hemi walker and a little assistance from other people but I'm having difficulty with my left arm. It doesn't move. I had damage on the right hemisphere so my left side is physically effected I do stretch the muscles in physical therapy. I start a program that will work my brain and whatever I can. It includes physical, occupational, and speech therapy. I'm just really hoping and praying that my left arm will be able to move again.

Just found site. Thank you, thank you, thank you! TBI survivor. San Antonio

Great worldwide group Stroke Survivor's closed group with 12k members. We all are in the same boat and yes we need support. If your reading this article you probably had a stroke or know someone that did. We are encouraged to tell are story, to ask questions or just to say we're having a good or bad day. https://www.facebook.com/groups/573759576077398/

This article is really great. I had a TBI about 3 years ago due to a ladder accident.  My wife has had Fibromyalgia Syndrome (FMS) for over 20 years.  Since the accident, my wife feels that I have changed.  Her FMS has pretty much exhausted any patience she had.  I showed her this article, but the points about being positive and having patience seem to be undoable for her.  I have been patient with her FMS for many years, but I think that it may not be a two-way street.  Since the accident we have gone to two different family therapists, but both pointed to things she was doing that were problematic to the relationship and she got mad and refused to continue.  I hope this is not what the rest of you encounter.  I hope this is not representative of the rest of you.  The points in this article, if they can be followed by family, can help in the recovery process.  I wish  you all a happy / successful recovery.

How do you deal with a person who has a TBI and drinks himself into wonikers? Came back from his original injury and proceeded to become the alcoholic he was before. How do you deal with a person who has thrown his life away and yet still desires the very poison that rendered him unable to think past five seconds.

I am not a TBI survivor, I am merely a nurse researching for my Masters.  I have read a few comments about noise being overwhelming, has anyone tried using earplugs?  Just a thought, I wish you all well.

OMG. You just don't described what I going through.

The contusion of my brain resulted from a head-on automobile accident in 1975. The amnesia improved over the years but I occasionally have trouble with vocabulary recall, especially when tired. Severe double vision has improved somewhat after a total of 6 eye muscle surgeries, I have pretty good functional vision but read only with one eye at a time. The normal visual fusion reflex is gone and with it is stereoscopic, binocular vision. Still I completed a Master of Science degree in 1988 and will retire from a profession as a dietitian in a few years. I couldn't fly a plane but I did ride a motorcycle for years and still ride a bicycle and drive. I'm happily married to a nurse practitioner and I'm doing alright.

How long did yalls last for before y'all healed?

I can relate to parts of so many stories on here, Denny especially. I was never actually told I have this but I do. Two and a half years ago I was backed into in parking lot and saw it coming. I have had short term memory loss and issues with different brain functions. In May of 2016 I was in two accidents that were twelve days apart. The first one happened as my daughter and I were stopped behind someone. We were struck from behind and pushed into the car in front of us. Twelve days later I was traveling with my husband at 55 mph when someone pulled out in our path. We ended up t-boning him. Along with all of my memory problems, I have difficulty speaking. I lose track of what I'm saying if interrupted, I can't fin words at times either. I suffer with headaches on the daily and neck pain. The neurosurgeon is conservatively trying to help my pain but I fear my memory issues are permanent. Reading everyone else's stories helps. My family doesn't get that these issues are what have changed me so much. I've gotten the comments too about how I look like I'm fine. The pain I deal with daily and accept. The hard part is the brain issues and no one understands what I'm dealing with. Thank you for letting me get my stuff out there. God luck to us all.

Hi I have a tbi, from an assault at a bar in April 2008! My frontal lobe on the right side of head is dead, and the entire right side of my head is titanium mesh! I've been on disability for going on 7 yrs. Because they can't seem to get my seizures under control, but I totally agree with Denny about waking up THE MORNINGS HAVE BEEN HELL EVERY MORNING FOR A LONG TIME! !! Between the physical pain, and another thing he said "just trying to face another day like this"! This is also the first time I have reached out to try and talk about my injury! Good luck and God bless to all my surviving brothers and sisters out there! I look forward to meeting other survivors ,and learning as much as I can from others who have been living with this silent disease, Im so sick of hearing from others "you look fine to me!" lol if they could only live a day in my head... being trapped in your own damaged head day in and day out really is hard!

To Denny,

I say prayers for you Denny. Please don't give up. I am not a TBI survivor, but my tall,good looking, fun loving 23 year old son was a victim of an assault in July of 2016 and suffered a severe TBI. I think I have an small inkling of your suffering. I see it in my sons eyes,hear it in his voice,in his walk, in his actions,when he's sleeping-which is unpredictable..He tries to be brave,I know he still has headaches..I get them too...sympathy pain.. the surgery scars, the waiting for justice for the assailant, the trying to work, the trying to be 23 again,the loss of friends...that don't get it, tired of going to therapists and doctors, tired of being tired.

You had a big impact on me when I read your post several times over the last few days. Think about going back to your chair again and you just might make a difference to one more person. Hence..here is the Starfish Story...

One night, on a sandy beach, a terrible storm started. It rained. The wind blew so hard that it shook the houses along the beach. The next morning was foggy and gloomy. Many starfish had washed up on the beach. A man named Buck walked out on the beach to look around. Peering into the mist he saw a young man walking along the beach. He was tall and slender. Buck saw him throwing starfish back into the ocean. Buck walked up to him and said, "Why are you throwing those starfish back into the ocean? They'll just wash back up on the beach again. It doesn't matter." Without a word the young man bent over, picked up a starfish, and threw it with all his might. It went way out in the ocean. The young man turned to Buck and said, "It mattered to that one."

 Author: unknown

Ms. C.

Sam, I get lost too on roads I have traveled all my life. I've learned not to turn my navigation off until I get there or I'll wind up in a different town. I know it's tough at a young age but it will only get better for you. You have a long life ahead of you. Keep at it and challenge yourself but not to excess. Your brain can only take so much. And yeah, people can suck sometimes. They have no clue. As time goes on you will weed those out who fit the suck category and keep the ones who understand. It's important that people you associate read this "Lost and Found" article and comments. Maybe that will help. You sound like a fine young man. Confident you will find your place.

I was reading Denny's comment today and just want to say, keep seeking help and talking it through. It has been since 1996 and 4 concussions later, that I have been in recovery. I deal with issues everyday, you are not alone. I hope you have a support system to help you cope. For me, life gets better when I learn, let people know what I am dealing with and that it's "a one day at a time" process. Reach out to a local organization in your area and see if they can direct you in the right direction. As for me, one day at a time, and never lose hope.

 

God Bless, first, you should feel fortunate that you can read with understanding. I can not; I get panic attacks if I try. Way too frustrating so can't help you with the book. All I know is that you have to know the personality of the person you're interacting with. If they're impatient, or intolerant to begin with; that's on them. You have to expect that. I know it sucks. My wife has those traits and now that I appear to be getting worse, it's worse. I've learned to accept this; though it's not easy. I still see myself as before. Confident, witty, smart and 99.2% always right. Now I'm probably down to 30%. I live in CT. I looked into the Brain Injury Assoc and found one in RI. I have a meeting with the head of BIA tomorrow. Along with accepting your limitations, also accept theirs and don't expect too much from them. It will make things easier. I had to learn that the hard way. Don't take it personally. See if you can find a support group. I start my first one this month. I'm new at this and on this site. I didn't have that one life-changing injury. Multiple injuries finally caught up to me. You need to associate with positive people. I pretty well keep to myself except for a couple of people that love me no matter what. You are not alone. There are a lot of us out there but we are in the shadows. Trust in God. I do not know why somethings happen, but He will turn it around for you and someday you'll understand it, and maybe even grateful. And most important; be patient with yourself.  We can be our worst enemy.  Denny

Hello,  I want to thank the person who began this site...I have looked for years for something like a way to communicate with others who suffer TBI...I for one, had a Benign tumor removed in 2002....that was [I know] a long time ago..but the grief of lack of adequate communication with my spouse and now teenage daughter is overwhelming.   The pressure just keeps on building.   I wonder what books any of you have read to help?  I did go to a therapist who saw me right after the surgery, but she did not help at all.   I feel like no one understands me and puts me in a box to only satisfy them.   Wow...I said it.   I would just like to be accepted for who I am and lots of patience with my family for what I cannot measure up to.   Your listening is greatly appreciated!  God bless

Barbara I know what you going through. I lost my memory back 1985 or 86 due to a yellow cab hitting the car I was a traveling in. I am still dealing with everyday things like loud tv or music or just conversation crows or even trains underground I don't get in them so it's really hard for me to go anywhere. I even lost contact with my lawyer and forgot the lawyers name. I never recover my money from my case in court. I don't know how to go about it since I can't remember my lawyers name. It's still is hard to cope with things.

I had a heart transplant and my friend suffering from TBI sent me this article. It is so me right now! Thank you for explaining. I am sharing this with my family. Xoxo, AM

People don't seem interested in knowing about my TBI. Everyone acts like they know exactly what I'm going through when in reality no one does. It has been almost 8 years since the wreck. I have learned to accept that and not be violent as much.

It is many years since my brain injury, but I still have big problems trying to concentrate on more than one thing at a time. It has been some time, and trying to be the person that I once was, is a complete impossibility. I am sad to say.

I had a severe TBI over 32-1/2 years ago and this is by far the best thing I have read. Interestingly I was at my DR's Retirement party this Summer. I am so lucky to have known him. Everyone knows of him: Dr. K.T. Ragnarsson. In reading this article I immediately thought of his comments. Here it is said:. Rehabilitation takes years after formal care is ended. He said, "I am sorry we do not have a cure ...yet." I have made important strides just this year. I will NEVER quit. Perhaps a cure is possible some day. Who am I to dispute the preeminent authority ? But I think the article, while excellent on many levels, should be corrected: Rehabilitation takes decades after formal care has ended. I do not mean to criticize, we are all on the same team. Jeffrey S.,  Patent Examiner and TBI SURVIVOR

I'm not alone and neither are you. Keep fighting. This article gave me hope and a voice after loosing so much of myself in the accident. I see life differently, my emotions are very intense, I understand who I am "NOW" better everyday. Don't feel sad or embarrassed if family or friends let you down, you are going to get through this thing. I didn't know what a TBI was until it happened to me so I try to inform people who don't know why someone is better on the outside but still not healed but it's because the trauma is invisible. It can be hard if you have normal CT scans or MRI because you may feel like you don't have an excuse to feel different but you DO! I'm changed and that's ok with me now I know one thing for sure every single TBI is different like snowflakes no Traumatic Brain Injury is the same so keep fighting, use alarms for important times, make a list for each day, wright EVERYTHING down it helps your brain find new pathways and helps keep you on track so you don't have to ask or repeat yourself. I'm stronger then I've ever been in terms of sheer willpower. My husband is the greatest man on Earth he saved my life and he's the thing I love most out of this world along with our beautiful angels. I was lucky to have that one person to keep the faith for me when things get hard. My other family completely destroyed me after my accident. They didn't take the time to find out what is wrong or how they can help with communication and were mean and nasty. People didn't have the patients when I loose the word or forget what I'm doing. I get stuck in cycles that I'm not aware I'm taking so long because my seance of time is way off. For example hours and hours might go by with me thinking it's been minutes and sometimes things seem to be at a standstill it is very confusing but I'm finding new ways to be the new me and so can you. My husband told me I was doing find and he knows I'll be ok because I'm to darn stubborn to let go or stop fighting for what I want and that's a happy life.