Living with a Traumatic Brain Injury

Meet a handful of people with brain injury who give courage and tenacity new meaning.

Posted on BrainLine January 26, 2009.

From the University of Washington TV/Research Channel. Used with permission. All rights reserved. www.uwtv.org.

Comments (59)

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

I was 25 years old when one song, dancing with a swing instructor took me from owning adulthood more everyday to a seemingly unchanged, emotionally dysregulated, literally mentally paralyzed by even the most negligible levels of stress. I went from getting bored unless I was going 90 miles an hour with my hair on fire doing seven things at once without blinking and I to getting so overwhelmed just stepping out my front door because I could hear everything that was going on, but I couldn’t ignore it. That I need more than anything or stability and therapy, but I don’t look disabled. I don’t sound disabled, but I assure you not even a shell on a good day almost normal function staying focused when you can literally hear everything making a sound from the air conditioning to the appliances leaves and Air and animals furniture just there all the time gets exhausting naturally impossible to get any kind of insurance with the amount hours that I can manage to work without completely freezing up like a deer and headlights are melting down from the slightest conflict deviation from routine complication. Disability Medicaid, right remember, I don’t look disabled. I don’t sound well sometimes I stuttered I don’t sound disabled and my disability literally makes it impossible for me to fill out paperwork follow up as you may like a duck quack like a duck. Nobody cares if it’s not a duck. I’ve been denied twice for Disability. The first one was my interviewer made several major errors in his summary of our interview, including the year I became disabled the year of my actual head injury 2009 is not the same as 2021. So I peeled in all my ducks in a row and come to find out, when it got to the medical review in the office that makes the decisions turns out they didn’t change any of the dates or include the new information that I had in my peel. My disability is the inability to do any of the stuff it takes to help me I am nothing but a burden to everyone I care about. My second appeal is about to get my second time. My first appeal is about to get denied because I got a little emotionally overwhelmed and forgot to get the papers faxed in after forgetting to check the mail for 10 days. I talked to the lady last week was more than that. Everyone sounds so positive about outcomes and improvements little victories and that’s wonderful but how do you access any of those resources you don’t have money. I guess the most difficult part for me is that everything I find on bilateral prefrontal cortex damage permanent mind you, especially when you throw in pre-existing diagnosis with ADHD. Either nonexistent or mentioned in a footnote as being exceptionally difficult to treat. I want to get better too I don’t know how.

I'm 51 and I was in a road traffic accident when I was 16 and suffered a tbi. Three years later I was assaulted and concussed. I have short term memory difficulties, often get names muddled, need routine to keep grounded. I get easily irritated. I often feel overwhelmed just dealing with life and work. For 35 years I've struggled on with a belief that something was broken in my head / something just was not right because the same struggles and challenges keep on affecting me in different jobs, different relationships, different locations. My career is peppered with moves and sideways changes every year or two, some by choice, some not. I experience acute anxiety whatever role I'm in. My first memory of such feelings was 6 months or so after the accident. Recently I've looked into tbi. I'm beginning to make a connection with the accident and my struggles. I can perform at a high level, I have a degree and several career achievements despite all my moves, my intelligence and creativity is not in question, but emotionally I'm often a mess. I accept my career will not advance any further but I'm worried it is now starting to be too much for me, even at the level I'm at. My memory is becoming more of an issue, especially when I'm stressed and occasionally I just have 'conscious blanks' - at times there are tasks I know need to be done but I just don't do them and then I have the consequences later (sounds weird but it happens). I don't expect anything can be done now after 35 years, but I'm worried about what the future holds,especially since I can't expect to keep on easily moving job every couple of years at this age.

At 7 years old my dad threw me down the basement steps...at the base was a stud wall I went through it into the old cast iron furnace, nothing was ever done about the abuse, no one ever believed me because he was a deacon of the community and pastor of our local church, I went through 18 years of abuse and years after this incident I got repeated head trauma. But this incident left me with double vision that I did have to go through vision therapy for but other things started too that I never put together with that incident but starting to think it all correlates. Such as the inability to speak nouns, sleeping 15+ hours a day, headaches, sensitivity to light and sound and inability to understand what people are saying...ive lived with this battled through it all my life since. But are unable to do so any farther, I cant work or function without help can I get on ssi? What are my chances? I was on it as a child for these issues that at the time were treated as unrelated

Hello, 9 years ago I was shot in the right side of my head; the bullet first went into my eye, causing left-sided paralysis. Let me tell you it does get better! I was not a Christian prior to my injury, but I am now! God saved my life!! Now I am living in my own apartment; God has shown me ways in which to handle the day to day things with only half a functioning body, although it’s sometimes difficult and frustrating I keep pressing forward. Now I’m 33 and I am finally living! Even with this disability I have done so much that doctors and others have told me was impossible, but as scripture states: nothing is impossible with God! He has been my hope and my salvation. I actively use this testimony to encourage others going through tough times. As Genesis 50: 20 says: “what man had meant for evil, God meant for good.” He had taken me away from living on the streets and being a full blown addict to become His daughter, off the streets and sober! And even though there was pain involved amid other difficulties; I would do it all again. Please friend I urge you turn from the ways of the world and turn to Christ!! Allow Him to change your life for the better, you won’t regret it; please understand that I’m not some bible thumping preacher trying to convert you; I just wanted you to read how God had changed my life during my brain injury on to today, it is amazing what can be done when you have God walking right by your side and the Holy Spirit residing in your heart

Hallelujah! Thank you for sharing your testimony. It’s a blessing and very encouraging.

I commend you on what you've been through and how strong you are. And the fact that you found the Lord is important he will never let you down. I knew the Lord before my son fell off the roof so does he. Our faith and love grow everyday stronger in God because he is magnificent. He gave me the opportunity to still have my son even if he's different I can accept that, I don't know if my son can. He's not happy with some of the outcome. But I express to him God let you live off that roof so you have to deal with the fact that you have a purpose. And so do you God didn't let you live for nothing he didn't bring you in this world for nothing I wish you the best and I will pray for you and don't forget you're never alone.

My daughter was 14 when a car hit her and had brain trauma. She had to relearn to do everything. Now at 29 yrs old, she is dependent on me her mother had two kids and a boyfriend. But things didn't work out cuz in her brain all she wants to have male friends nothing else matters. I'm worried that I die what will happen to my daughter? Her boyfriend took the kids. I just hope and pray.

Dear Towanda,
I am going through somewhat of a similar situation with my son who's 26 years old. Remember you're never alone and the lord loves you things will work out and I will pray for you. I know being strong is hard but I guess that's part of being who we are. One Mama to another

7 years ago, my husband fell 45 ft and lived. He was in a medicated coma for the first month. He broke both his legs, suffered 2 TBI’s, Frontal lobe and brain stem. He lost sight in his left eye and his right foot was amputated. He also spent 9 months in an in-house rehab facility. He only wanted to learn to walk and did not participate in any activities. He was an extremely active alpha male with very little filter. Now he says things, to me, that are very hurtful. We are moving to TN in a few weeks and I am hoping that him being able to be more active will make him less cranky. He is only 56. Will he be happier or will it just get worse? He will not go to any doctor. He thinks he has seen enough. He takes no medication or is willing to take any. As his wife, I cannot convince him to do anything that might make life less miserable. How can I deal with him and not lose my mind? My daughter was extremely affected by his accident. I can’t get either of them to go for mental health help. Whether it be talking or taking medication. I am at a loss. Neither believe that anyone has dealt with issues that they had to deal with. I am at a loss. Any helpful suggestions would be appreciated.

My 26 year old son had a traumatic brain injury from falling off a roof 4 brain surgeries later he feels like he's seen everybody and won't go to the hospital. I understand your dilemma I live with it every day he gets arrogant and upset. I know it's not easy to understand that is the brain injury, not your husband talking you still have to understand it's hard on you he doesn't mean it. I will pray for you some days I don't know how I get along but I do God is good to me. My son refuses to live in a house so he's in the street I'm in a shelter close to where he is so I can watch him. But I know there's a solution and we will be okay so will you God bless you

I’m 44yrs old and I suffered a TBI with a concussion. I fell over 9’ and smashed the right side of my head on concrete. I had a major artery burst inside my head between my skull and brain. I cracked my skull open enough they used the opening to fix my artery. I don’t remember anything from the accident. It happened on 8-23-19 and I immediately went into a seizure and almost died. My co worker saved my life. I was fortunate enough to awake knowing my family members and able to walk and talk. I’m no suffering ringing in my ears,severe migraines,memory loss,eyes tearing up for no reason other than watching tv or my computer and phone. I struggle with remembering to eat I need a cane to help me walk around for balance. I get aggravated and agitated easily. I was hoping to be recovered by now but my symptoms are getting worse. I just started getting ringing in my ears and most recently I had a seizure with my 7yr old daughter in the car. Fortunately we were at a red light when it happened. I get fatigued easily and I was a very active person before my accident. My thoughts are mostly negative and angry. I’m depressed and full of pain throughout my body. Is this the life I have to look forward too? The migraine headaches are severe. Since the accident this is my 2nd seizure after 44 years of never having one. I’m unemployable and now unable to drive for 6 months. I guess I’m looking for something to give me hope that things will change for the better or are my symptoms normal for a severe TBI. My memory is awful my cognitive skills as well. Any information would be greatly appreciated.

Hello my name is Deborah I'm sorry to hear about your accident. But trust me it does get better, as long as there's somebody you love and they love you in your life they won't let you down. You're never alone and I will pray for you. You deserve to have peace of mind and I believe God will give it to you. Be well and take care someone does love you

Hi, I am so sorry to hear of your accident. Here is what I have learnt from the internet, a psych. course and life. I have CFS and do understand what it’s like to be in constant pain. I find it’s best to focus on something that interests me, knitting, drawing, a computer game. It reduces awareness of pain. I went on a rehab. programme which helped. It sounds as if you could be assisted through a rehab. programme and a doctor who cares. Try searching until you find one that is free or you can afford. You could join an organisation that focuses on Acquired brain injury. But most of all, I found it helpful to manage my emotional and mental state. This might assist you. There’s something called positive psychology and you can get books by Martin Seligman who pioneered it and do an online course through PENN Uni and Yale Uni on positive psychology of Happiness. It has helped me immensely. It gives one back some control over one’s life. Here’s a link that might help: https://www.coursera.org/specializations/positivepsychology

Finally, I started selling stuff on EBay which helped financially. You could work out what your skills are and how you can earn some money from home as a virtual assistant, making crafts to sell on Etsy, selling stuff from goodwill shops on EBay, dog walking etc. There are many people working from home since Covid. Be creative. Have Hope. I believe that you are unique, God loves you and you have a special role to play, especially bringing up your daughter. Please consider joining a church or a community centre for a support network. We are not meant to struggle alone. There is hope and even if you have bad days, know that there are good ones ahead too. Finally, I found that taking Vit B, C, D, E and Omega 3/6/9 oils daily, really helps as does eating nutritious food. I hope some of this helps. I wish you well and hope you find ways to move forward.

I completely understand your feelings and am coming up on the two year anniversary of my injury.

The thing that's helped me the most has been talking to a neuropsychologist experienced with chronic pain (Dr. Phil Appel, he does video visits). He introduced me to the book The Power of Now, and I listen to it on a slower speed. The author Eckhart Tolle also has a bunch of YouTube videos.

Make sure you're getting lots of sleep and taking medication if you need help falling and staying asleep. I also wear ear plugs, an eye mask, run a fan, and stay cool at night.

An antidepressant can also help to get out of these hardest months.

Lastly, I feel a million times better when I drink lots of water and eat a whole foods plant based diet. I only eat homemade food and cook everything from scratch -- no boxes, preservatives, MSG, flavorings, fillers, etc. Check out nutritionfacts.org.

Sending you healing energy

Please note: Dr. Phil Appel, is a Clinical Psychologist, not a bona fide neuropsychologist. He appears to incorporate his own personal spiritual beliefs and practices into his treatment plans. His beliefs appear to be generously influenced by Ekhart Tolle, a New Age spiritual leader with a net worth over $80 million accumulated through monetizing his (Tolle's) beliefs and selling them to the public via books, lectures, retreats, etc. .

I have an objection to anyone in a Healthcare role using their religious beliefs to influence others unless the patient themselves makes a statement like, "I believe in the power of prayer. Will you pray for me?" or something of an equivalent nature depending on the person's beliefs. TBI patients are especially.in extremely vulnerable positions brain-wise and this kind of influence could change their lives in a direction that might not fit well with their previous belief system or that of their families. From an advocacy standpoint, I feel it's necessary to point this out.

I don't have any personal experience with Dr Appel; my comments are a reflection on what I've seen written by him and about him by others, such as LinkedIn profile and recommendations. I'm sure he has many wonderful qualities. This one aspect I felt deserved attention. Each person can access for themselves using their own criteria.

They will vary at times, you will have good and bad days. My husband had TBI 3 years ago & has very similar situation as yours. He gets aggravated too at not being able to do what he used to & he also has to remember to bring a cane for his balance. Eyes , Ears he has a hearing aid (3 yrs after TBI ) be patient with yourself & try to keep positive mindset..it helps. Wish you well

1973 I fell from a 2 story window and landed head first on cement patio. I shattered the left side of my skull and lost my two front baby teeth. I was only 5. I have long term issues now I cannot even start to mention. I had a good life, but at the age of 30. I began to fall apart. I need a doctor who will listen to me and help

It is good to know we are not alone.
My history of head injury is substantial as well.
Fortunately all were closed brain.
From rolling down the stairs and cutting my head on a beer bottle. Age 2.
To cracking the windshield with my head on return from my drivers test during a car accident as a passenger when a 87 year old driver died at the wheel and hit us head on. Age 16. To being knocked unconscious as a friend fell asleep at the wheel hitting a parked car and knocking it over 30 feet. Age 22. At age 26 I took the mensa test - passed it. So tbi has not affected my intelligence.
But it does create emotional inconsistencies. My most dominate being myself diagnosed disinhibition. Followed 2ndly by critical recall of info, most often I eventually get it.
Things that helped me IMHO - I am not giving advise BUT stating history.
Lots of list making & goal setting. Writing everything down. More than one fellow at college found my notes were better than going to class. Self help gurus Earl Nightingale and Tony Robbins methods are excellent tools for those of with limited critical recall. I started taking Msm at age 45. I have several electro current devices that calm me. Including microcurrent & pemf. But not Tens.
I limited my stories to just 3, I have 7 more just as “impactful” to my skull. I have survived, and thrived. You can too.
The hardest rule, be kind to yourself. Rule number two, talk about it with your friends. Keep trying. Set goals. Enjoy things - find that security blanket. At age 60 I mastered the Rubiks cube. Patterned learning. I work hard at extreme sudoku - average time 25 minutes.
To quote the Sunscreen song - The race is long and in the end, it's only with yourself. Study all the lyrics to that song, it’s just a good tonic.
Oh, and be careful at there.....

Can I use these stories to my presentation? I will leave a source on my PPT

I fell from the top shelf of my house’s kitchen when I was 3 years old. I remember being in the hospital while they were stitching my forehead.
My hard working single mom never followed me up to see if my head was ok. My mom said I had a couple more mild accidents involving my head. I was ok in middle school, until I turned 11. Then, after that, I kept feeling like I was being left behind. By 8th grade I was one of the most bullied kids in high school. I kept messing things up, incoherences happened to me all the time. I knew I had something wrong. Nobody could tell what. One teacher told my mom that I was not supposed to be in that school. That means everyone knew about my condition. Everyone turned a blind sight as years went by. I was always the person people would take advantage of. I struggled went to a University. Struggled the hell out of it. Still nobody could give me a hand. I kept thinking I had a disability but how I could explain it?. I isolated myself. I moved to my grandma’s house who at that time was dying from cancer. I graduated. Barely, after 6 years of over studying in order to not distract myself or losing information. I couldn’t have real friends, nobody would trust me because I would reflect so many insecurities. I went looking for jobs but nobody would hire me. I ended up getting mediocre jobs who would take advantage of me every single time, I have been fired more times than I can count with my hands. I moved out of my country, angry and disappointed. I came to the US. And guess what, same story. Multiple dismissals. Depression, anger, anxiety. Hospitalization for depression. Nobody would help me but myself. I went to the doctor after seeing a documentary against Adderall and ADHD. And fell identified with the symptoms. I wouldn’t care about the side effects. I got it prescribed. And my life changed. I was 29 years old. I lost my twenties, my teens, friendships, multiple opportunities. Not too long ago I wanted to confirm how underrated my life has been. I have an IQ of +140. Yikes. So much wasted potential. The tons of things I imagined that I could’ve done but didn’t figure out how to achieve because of my neurological blockage and trauma could’ve been someone different. A traumatic brain injury causing ADHD was my eternal scar. Is my stigma, my loss. My life. Now a year after and a half the discovery. I lay depressed, with PTSD. And somehow I look like am 23. Confused and reborn.

Hi my name is Deborah, it is very common after a brain injury to be confused aggravated depressed and not know why. My son fell from a three-story roof 4 brain surgeries later half of his skull is not real it's ceramic. they don't use titanium anymore due to the lack of being able to see it through CAT scans and MRIS. I promise you you're not alone I will pray for you.

This post looks like it has been written by me. The difference is my age; I am 45

i belive that this story is the closes thing to my life that i have ever read about it is my words exactly
i can not add anything , i will say this my injury happening when my sick brother threw me into a studd wall at age of 5 years old then my head went threw a windshield at age of 14 years old with other head injurys your Story has motivated me to get on some meds. thank you.

Wow. Seems like a mirror of my life. I hate myself

Please don't hate yourself, there were many people who care about you. my son goes through bouts of depression and anger as well from a TBI, He was only twenty-two when he fell off a three-story roof and there were days when he tells me he would have preferred not to live. He doesn't understand how much joy he brings in my life just by me seeing him and interacting with him. I'm sure someone feels the same way about you. You're here for a reason don't make light of it I will pray for you. You are worth something so don't hate yourself you lived for a reason God bless you.

Ten years ago I was in a car wreck and git t.b.i and anoxic brain damage nerve and muscle damage, including incontinence of badder and bowel and dementia I agave been strapped down in mental hospital many time due to emotional pro legs after injury I can't work confused always and still embarrassed about wearing adult diapers 24/7 feeling stupid due to memeory

Within 9 years I suffered 4 Trumatic brain injuries two of which the doctors thought I would never survive. The first injury that I sustained was in the late summer of 2001 while waterskiing , I fell on my face breaking my jaw and having a bad head concussion along with ligament & muscle tears to my right hip. By the winter of 2002 my doctors had given me large doses of steroid injections to my back injuries & multiple combinations of drugs for pain, mult forms of anxiety, sleep deprivation, etc. etc. This was the beginning of the end for me. By Thanksgiving vacation I was on so many meds that at 2pm in the afternoon in freezing weather, wearing nothing but house clothes, I became confused and disoriented and wandered out my back door and into Deschutes National Forest. Apparently I had stumbled and fallen down multiple times due to the many contusions I had on the back of my skull. By 8 o’clock the next morning when I didn’t show up for work there was a search and rescue party sent out to look for me. I wasn’t found till that afternoon. When they found me I was in respiratory and coronary failure. I had been pronounced dead at the scene but because I was making gurgling Sounds they began rescue CPR I was later told that the doctors believed that if I did survive, I could possibly be a vegetable because they had no idea how long my brain had been without oxygen. My kidneys and liver had failed.....creating a state of acidosis.....few people survive. The temperature that night had dipped down to single digits and the side of my body that was laying on the ground had solidified my blood. Trying to get my blood thinned out without blowing a clot to my lungs they thought was nearly impossible but somehow I managed to get through it and I survived. Recovery was long and slow lasting nearly a year and a half. My short term memory was extremely impaired and I had emotional problems stemming from the brain injury. I was forced to retire from my nursing position because the possibility of putting a patient at risk due to mathematical errors in calculating drug dosages was to great a risk. I never went back to work again. In 2005 a friend and myself headed out to the desert for a horseback ride. An hour into the ride we encountered a sick and dying mountain lion that had stumbled out onto the trail not too far in front of us. I remember nothing after that. Apparently my horse went totally berserk and I ended up on the ground underneath him and he stomped on my forehead cracking my skill wide open in the front, Just barely missing my temporal artery. The friend I was with just happened to have an Ace bandage In her saddle bag. She wrapped my head wounds tightly and took off racing for home to call for a air life helicopter. My cell phone unfortunately was in my saddle bag but my horse had made it back home in record time. I sustained a profound head concussion and stitches nearly the length of my forehead. “Air to the brain....Never the same!” That was head trauma three. By this time my marriage was becoming unhinged due to the changes in my personality. I had outburst of anger and rage because my active lifestyle had turned into a life of #1 couch potato in the family and I could not stand it another minute. I suffered from social anxiety and spent most of my time home alone becoming more and more depressed and my husband becoming more and more abusive because all of these head injuries had changed me and changed our relationship forever. In 2010 A domestic argument led to the physical struggle over a gun I had in my nightstand that was loaded. Unfortunately that bullet ended up going through my frontal sinuses between the eyes, leaving shattered pieces of bone into my brain. By the time I was brought to the hospital I barely was alive from loss of blood but they took me into surgery removing all of the pieces of bone and putting a plate in my forehead to repair the damage from the bullet. I was in the hospital ICU for two weeks and for a total of two months. My husband by this time was served a restraining order and for the first time in years I was able to start to rest, heal and work on getting my life in order. When I read medical articles about Trumatic brain injuries and see which ones apply to me it’s sad to think that I could probably check most of them off. I happily remarried and my husband does a great job of keeping me on task because without his help my functioning from day to day would be nearly impossible. I’m easily distracted, I’m exhausted most of the time because of the extreme amount of physical energy it takes to think and move and multitask. I have one girlfriend that has gotten me through so much by being there for me emotionally but outside of that I am socially inept. I have anxiety leading to panic attacks being around people, my memory is the worst, reading recipes just to cook can take hours whereas before it would take me 15 to 20 minutes to throw something together for dinner. Now my husbands dinner menus are pretty limited as to what I can do myself. I used to have so many hobbies now my interests hold no real enthusiasm for me anymore, everything seems bland, boring, and depressing. I do have a psychiatrist I see every 4 to 6 weeks since the day I was admitted in 2010 and he sets me straight when I start becoming too negative about things or I don’t understand the things that people say to me. Unfortunately freezing to death in 2002 changed my personality but it also brought on massive arthritis in practically every one of my joints connected with Cartledge and I’ve averaged two surgeries a year since 2002 getting artificial joints. All the joints in my fingers have been replaced. I had my left knee joint replaced and the joint in my Big toe was operated on six times before they finally just amputated it. They have done nerve ablation‘s in my neck and low back and I have had five surgeries on my shoulders. I know there will be more and I have to mentally prepare for those. But I do believe that against all odds I did survive for a reason........to be able to help those people who are going through physical and emotional health issues by supporting them and letting them know that even though it seems hard at the time and overwhelming there is always a little glimmer of hope Just around that corner.... we just have to believe and to look for it. In these last nine years I have been able to find things in life that bring me joy that I never used to give much thought to before and the things that are most important to me now are the people that I love and that love me.

In February 2011, I was in a severe car accident. I had a 10% chance of survival the first night. My injuries were shattered femar, elbow ankle, bones in the forearm, eye socket, internal bleeding in my pancreas & liver, broken jaw. my ear was hanging on by only a 1/2 inch of skin, & a skull fracture. Obviously, I shocked my doctors & beat that 10%. I now have metal & pins in all the places I said were shattered after many surgeries that caused other problems like my right tear duct no longer working & nerve damage in the right side of my face due to going through my sinuses to duck out bone fragments in my face, my left eye socket is now metal, my ear was saved though they said I'd never hear out of it, I only have 30% hearing loss, internal bleeding stopped on its own, I was told I'd likely never walk again (4 months in a wheelchair, 2 months with a Walker, 1 more with a cane & I'm fully able to walk with only a slight limp. Due to all these injuries, I was put into a two week medically induced coma so my body could heal as much as possible before the surgeries started. I was in a morphine haze until the end of my nearly two-month hospital stay. I had a trachea so I couldn't communicate much but by chance my doctor had me follow his light on his pen with my eyes (a week before I was released to a physical rehab hospital for a month) & he realized that my eyes were going in opposite directions & thus the TBI was discovered & after some scans revealed I had damage to my left frontal lobe as well as other places, but that was where the main & most significant damage occurred. I was basically told they wouldn't know how much it'd affect me in day to day life until I was not in a hospital setting with all four limbs casted or bandaged up (144 staples & 24 stitches total). The physical rehab place was a joke. It catered to elderly folk who broke a bone, not to a 22-year-old with metal in all four limbs that couldn't even fit up when I arrived. They could only get me strong enough to learn how to get from my bed to my wheelchair or portable toilet. But they took horrible care of me in every other way. Took my staples out 4 weeks too late so my skin had healed around them, so all 144 had to be dug out of my skin, they changed my catheter ONCE the whole 6 weeks o was there & only because I wouldn't stop complaining that even though I had a catheter that urine was still leaking onto the pad I had to lay on. They didn't believe me even though I couldn't get out of bed & there were yellow wet spots on the pad. The day I was released when some nurses aide removed the catheter there was pink in my urine & the tube she pulled out was covered in blood, she just kinda looked at it & threw it away with no mention in my chart (had to have an outpatient surgery due to the infections caused due to their negligence) & the pad was there for when I needed to poop & its already humiliating having strangers wiping your bum after a bowel movement but they'd make faces & my mom would have to reclean me when she'd come because they never cleaned me thoroughly. This has turned into a story of poor treatment. Sorry. Once I was walking again & didn't have constant care, I was so impulsive. I put myself in very risky, dangerous situations. 10 mins after making a decision, I'd think to myself "wtf were u thinking?!" because the decision was to do bad. The part of my brain that turns short term memory into long term is damaged so I remember things from 3 years old but not what I ate for lunch two days ago. I say whatever pops into my head without thinking it through. I interrupt people when I think of something because I have to say it immediately even if you're talking. Still impulsive but not nearly as bad. Decision-making skills are poor. I now have severe anxiety, worse social anxiety. I have a few OCD tendencies about certain things. I could not focus for very long or complete a task before starting a new one, but I'm now on medication that helps tremendously. Sometimes it's hard to think. I know the answers are there, like on the tip of my tongue but the best way I can describe it is my thoughts are slippery inside my head & just when I'm grasping a thought, it slips through my fingers. I'm more depressed than I was before TBI. No one in my family understands or has tried to understand until my dad recently after 11 years of watching me make bad decisions, not be who I was before, etc. I'm raising a 12 & 7-year-old on my own & besides reminding me constantly about school projects, functions, or homework & the need to go to the dentist or eye dr. I'd say I'm doing pretty well because I have two well behaved, respectful, considerate, compassionate, loving kids. They get annoyed with me sometimes for forgetting things, but I put notes everywhere around the house & on my phone to help with my forgetfulness. I just wish I had people in my life understand & realize how hard things they take for granted are for me to do. My emotions are affected a lot with nothing to set me off, out thr blue feelings every few months that last too long to not affect my life & my kids. But that's my story. I'm 33 now & have had to co.e up with ways or tricks to handle the things that are affected due to TBI but it was a hard 11 years figuring it out & I still dont have it all close to figured out.

Hi my daughter suffered a frontal lobe Tbi 12 years ago and has struggled every since. It was no where as severe as yours however her mental health has declined severely. It’s being treated as a psychiatric condition and the meds prescribed are not that effective. May I ask what medication you are on?

Thank you for sharing your struggle. It sounds like you have a lot figured out in my opinion. The notes and visual aids are good! What really helped me with all of that was a structured routine. I made a routine that forced me to check all of my notes daily lol. I was so bad with note and reminders that I would forget to use them. I called myself and left myself voicemail instruction. I finally setup a structure and routine using outlook calendar and pop up reminders. It worked so well that I started to rebuild a new life around routine, goals, tasks and self awareness. I have had an additional TBI since my first one and having the routine has accelerated my recovery and helps me stay positive. The hardest part about TBI after the event is over, people do not see your injuries and in my case, I don’t want them to. Please keep sharing your success stories and any tricks you find that work for you! God bless,

Your story - as sad as it is - made me feel so much better. I have frontal lobe damage as well and everything you said is spot on. May I ask what medications you take?

When I was 16 (2004) I fell off of our roof (15ft) and hit head first on concrete. I was in a coma two weeks and life support for one week. I had to learn how to walk and talk again. I tried and still try to ignore symptoms because physically I look normal and I don't want to use it as a crutch. I joined the Army at 22 made it through the clearing process and finished my contract out with no issues. I used my GI Bill and got my Bachelor's Degree. I kept so many feelings to myself and decided to see a doctor to save my relationship because my mental health was/is a mess. My depression and anxiety hit me so hard some days it's hard to function and I have really bad mood swings. I also have bad tinnitus and trouble sleeping. I'm just really scared because I need to take care of my family and I know I have to take care of myself as well and don't know if everything is going to be ok.

It's good to hear that other people have a few of my problems and how they live with them. I'm 58 years old and approximately 30 years ago I wrecked my motorcycle and hit my head on something at about 80 mph. I got a helicopter ride to the hospital and spent 6 months in a coma. All I can remember is the exit ride from the hospital in a wheelchair. A nurse was pushing and my mom was next to me. I still have to laugh at when I got to the exit door still in the wheelchair I looked to the right and looked to the left and asked my mom where is my motorcycle ? She told me you can't ride it right now it has a flat tire. And anyways I had to go to a rehab center so I could learn how to do a lot of things all over again. I was in rehab for another 6 months. By the time I came home everything was new to me and I mean EVERYTHING. I was doing good for approximately 10 years with no problems that I could tell. And then I came up with a seizure disorder that really rocked my boat. It was hard to accept. Very hard. And seizures are very bad for your brain. Make sure you take your pills. About 15 years ago I'm pretty sure that I was pushed from a balcony and I landed on my head. This time I was in a coma for 3 months. My seizure disorder was much worse than before. So far the doctors and paramedics have had to use the paddles and jump start me back to life 6 times. It's hard to keep going sometimes. Poor memory. Depression. Loneliness. I found out that a man that called himself a doctor here in Bristow Oklahoma is really a veterinarian. Yes it is hard to keep going sometimes.

Bless you, I want you to know as a mother of a TBI survivor my heart breaks for you. On the other hand after all you have been through, you must realize you are special to live through such trauma. I thank you for your life story.

Gil, Resources are available for you and your family -- especially given your service in the military. One of these orgs may be a good place for you and your family:

Cohen Veteran Network & Military Family Clinics
https://www.cohenveteransnetwork.org

Military One Source
https://www.militaryonesource.mil
Military OneSource is a free service provided to service members and their families to help with a broad range of concerns including money management, spouse employment and education, relocation, deployment, reunion, and the particular concerns of families with special-needs members.

Veteran 2-1-1
http://www.211.org/services/veterans

I'm writing this in search for some sort of study that specializes in TBI or trauma and the aftereffects.

My son has seen every kind of specialist there is for the many physical issues that he has. He has chronic pain in his neck sometimes causing severe headaches and now has GI problems that are debilitating — also high blood pressure. No doctor can diagnose him. He has been tested for everything including infectious disease and rare disease. Hep A, chrones, all those stomach diseases. Prolotherapy, massage, chiropractors, ortho, pain management, neuro, cervical epidurals, acupuncture. There's more I just can remember it all. We have spent so much time and money trying to live with his pains. And still nothing. No diagnosis. I need to find someone that can help. There has to be someone out there that can figure this out. Please help. Thank you. Here's our short story:

My 17-year-old son (now 23) suffered a TBI while playing high school football. He's pretty good now after a long time rehabilitating. He was on life support and then a breathing machine as he also ended up with pneumonia and pneumothorax because they had no idea that his lungs had collapsed. He was bedridden and couldn't talk or get up on his own. I had no idea what the outcome would be. He then suffered a DVT in his left arm and neck (the jugular). This was from being in bed not moving. Six years later my son is about to get his BA at San Marcos state. He has come a long way.

Please look into chiropractic for your son. Mine had ear infections, tonsillitis, GO problems and neck pain. Until we discovered he had upper cervical subluxations and started him seeing a chiropractor that use the Gonstead Chiropractic Method. Literally ALL his problems have corrected themselves. Please look into it. Your brain uses your nervous system to relay messages to run your whole body. If it can’t, things don’t work right.

Did he get tested for Chiari Malformation?

I was tboned with my car totalled in 2016. I recently found out i have severe tbi. My way of getting through each day has been gratitude. I also think of small tasks the night before that i can accomplish the next day. I do not put my mind and focus on what i cant do. Its what i can. Being gentle and loving to myself first and having a value approach to life. God bless

My daughter was in a auto accident back on Father’s Day 2015. It’s definitely life changing for her and all of us. She was 10 years old at the time with no issues and now at 14 she is still unable to walk, speak or be independent with any normal task. The hardest part is not having a clear path or a for sure answer on what to do or where to go or if she will ever be able to speak to us again.

Hi all,

On 31st July 2018 my husband who is 55 years old was on his mountain bike riding on the road coming around a roundabout and just a matter of 2 minutes away from home when this car overtook another car and went straight into my husband. All he remembers is hitting the bonnet, the windscreen, seeing a car wheel, then nothing. Luckily for him, he was right by his doctor's surgery and a district nurses station, so he was attended to within minutes. All I was told was that he was out cold for 8-10 minutes. He came around in the ambulance but didn't know his name, where he lived, where he was, where he'd been, where he was going or what had happened.  Luckily again he had his passport in his jeans pocket.

The police came for me and as we were on our way the hospital parked at traffic lights, one of the policemen jumped out of the car over to another car parked at the lights, lights changed so off we drove. I asked "are you not waiting for your mate?" and his reply was to "that's the car that's just hit your husband, she left the scene telling people she will meet the ambulance at the hospital," but she had no intention of doing that as this was 1 hour after the accident. My husband had not even come around and she drove off but her reg was taken.

His injuries were severe head injuries. The doctor explained that when he landed his heads hit the road and exploded. Tthere were bits missing but they had stitched him up the best they could. He had 4 internal stitches and 24 external. It looks like a round spiders body with 4 legs. They had to drag his scalp to join up so its bumpy. Also he had a broken rib .

The main problems started when he got home. He has no feeling in his lower back, buttocks and the top of his legs, no feeling of when he needs to go and use the toilet. He's staggering and slurs his words every so often as if he is drunk. He's depressed but is denying it. His eyes seem to roll in his head now and then. He's nasty and angry. I can't talk to him.

What makes matters worse is that he is my carer. I suffer from mental health issues plus other health issues and it's putting a real strain on our 20-year marriage. He tells me he hates me and for me to get out. He doesn't want me anymore and because of the way I am it's making me worse.

I don't know what to do. He's had another cat scan and the bleeding on his brains stopped. I've been reading up and it said he might never recover fully.

I don't think our marriage will survive.

Sorry my post is so long .

I'm actually the brain injured one in my relationship and related to your husband. I know it's my mental health issues that cause the outbursts. I tell my wife the same things and she has done nothing but be there for me and encouraged me to get help. Alot of feelings get suppressed because I am embarrassed of my actions. Just hope things get better for you guys and that you can figure it out.

Hi Liz,
Please hang in there. I had an injury like your husband, unfortunately pribably worse but frim what you said in your post we sound similar. I am about 5 years post injury and my wife was there during my recovery. He Sounds like he is doing the same things that i was doing. Telling her I hated her because of XYZ (whatever the reason, just fill in the “xyz” with anything) . It made complete sense to me back then, but i dont remember now what or why I was saying any of that . There is one thing I can tell you to do for sure. Not in a mean or condescending way, but more of a documenting recovery fashion , video record interviews with him on a weekly basis. Do this OR almost better, have HIM interview himself, ot just give a basic recount of everything that is going on in his life that day and/or the past week. Almost like a weekly video diary. When he looks back after time he will be able to view himself as an outsider and realize how much you have been there for him and how much he has come along. I cant promise you anything, but I am so so so so appreciative that my wife hung in there. Im not sure i would have done the same for myself. Here is the silver lining- he will inprove, outbust will subside but it is a longer (unfortunately) slow process., Also, he will be able to view himself through an “invisible mirror”, where now it might not reallt seem possible to you. i could not do this close in time to my TBI. If you have calm collective interiveiws with him on video , he will be able to view them later as he improves. This will also make him happier to see his improvement , even though right now he will most likely say things like “I’m fine! (I did).
Also, I would recommend going to counseling (physchatrist/ physologist) who has alot of experience dealinf wiht traumatic brain injuries, they will help tremendously and know what you are goinf through and help YOU (and him , of course).
Best of luck to you guys.

I hope you & your husband make it!

In 2015 within 6 months of each other I had three TBI’s. I slipped on some ice on our deck and fell backwards hitting my head severely. A month later I was rear ended and again hit my head. Then two months later I was on a fishing trip bent down to pick up something I dropped and stood up. According to my two friends I suddenly fell backwards and hit my head in the same area as before, only this time I lost consciousness and did not come to until the next morning. I do not remember anything other than bending down. By the time we left three days later I could barely walk, talk or keep my balance or put together a sentence. I ended up having to take an early retirement and go on disability. I had been an accomplished artist but found I could no longer remember how to draw. After nearly four years I have relearned most of my daily skills but still struggle on most days. People look at you and think nothing is wrong. But they do not see how much you have to struggle to remember words, let alone put them in a sentence. They do not see how much of a struggle daily living is. I have learned to draw again but not nearly as well as before, but at least I can. No longer can I sit for hours working on a piece but instead I do several minutes until my eyes cross or I get fatigued. I am very grateful I have come so far but it has been a long, long journey. I thank God, my wife and all my friends for all their support. Without it I don’t think I could have come as far as I have.

I was in a bad car wreck in 2006. My brain split apart and I have a cyst in the middle of my brain. I can't drive, live alone, work or have a normal life but I'm still here. I was told I was paralyzed from my neck down but I'm not. I cook now and remember things. Doctor's gave my parents no hope of me living or when I did they said I would never walk. I've been told I was probably gonna have seizures but it's been 12 years and not one. I was a new baby at 20 years old. I had to relearn everything all over from walking, feeding myself, dressing, and even wipe my own butt. I have gone through a lot but I'm still not stopping

Your story is very similar to my daughter's who also had an auto accident in 2006. She was 19 yrs old when on her bike (w/o helmet) she was hit by a car — five months in the hospital w/lots of rehab needing to relearn all — now living at home, but working p.t. in father's office. She doesn't like to talk about where she has come from and what she has accomplished; it makes her depressed. But she keeps pushing forward. I would love to see her have more joy in her life. Your ability to describe your progress is admirable. Keep on moving on!

My first brain injury was when I was a year old I fell two stories on concrete. They did know about traumatic brain injury back in 72 my eyes swelled and the doctors told my parents that I'd be lying in that I could see if they can find it cuz they couldn't find my eye but I was not I didn't start wearing glasses until I got older for reading. But back in 2001 I got into a car accident and I was in coma for three and a half weeks and had to learn to do everything all over again I was exactly the same because I always had traumatic brain injury this one just made things a little bit more harder for me. And in 2010 we moved to New Mexico which they hit me five times within a year-and-a-half and all those accidents just made my somatic brain injury worse. But like I tell people it is what it is

Years ago I was beat into a coma
Had learn how do everything over again
Off balance, difficult sleeping, depression, thoughts of suicide, I tried go college but I couldn't do it (concentration) short-term memory loss, mood swings, I just learning how to deal with it. Good thing I live on my, I can cook, I was raised in church I remember everything

In 2003 I had T.B.I brain injury to my head my head smashed the windshield and I had a bump behind my head, a cut and I lost consciousness, I have arthritis in my right leg, lower back, and I have pain on both sides of my jaw and behind my ears.

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