Traumatic Brain Injury: A Lifetime of Recovery

Traumatic Brain Injury – A Lifetime of Recovery

Early on, in the months after I sustained a traumatic brain injury, I heard a saying that I am now quite familiar with – recovery from a brain injury lasts a lifetime. While so many have found this to be encouraging, I did not. In fact, the very concept appalled me.

Before being struck by a teenaged driver back in 2010, I spent many years in Corporate America and went on to start and run a successful web design and business marketing company. I lived in the reality of hard and fast deadlines. Projects had a start date and a firm completion date. Always one to meet committed project completion dates, it was a safe bet to say that projects began and ended on time. My corporate clients counted on me – and I consistently delivered.

So this concept of something that had no end date; no date to circle on a calendar; something that would go on as long as I had a heartbeat was NOT something that I embraced. Taking it one step further, I made up my mind early on that I was going to be that one-in-a-million person who recovered back to 100%. I was going to get back to where I was before my accident.

Fast forward to today and time has shown this to be a fallacy. My 2016 reality is vastly different than my 2011 reality. Now well into year six as a survivor, I have found that I am a very average “TBI Guy.” The challenges that I face today are in lockstep with the millions of Americans who live daily with the long-term effects of a concussion. Typical of so many, I have ongoing memory challenges, often more significant than most realize. Word-finding challenges and aphasia are my constant companions. Add a splash of vertigo and half a cup of tinnitus and you have the perfect recipe for a pretty average post-concussive life.

And amazingly, today I am okay with that. All I really need do is look around me to see that, although challenging, the after-effects of my accident pale in comparison to those faced by other survivors. I am able to work, albeit at a reduced pace. I can walk on my own and drive a car. My marriage survived – not always a guarantee after trauma strikes. I have a smaller circle of souls who love me unconditionally. When I take a step back to look at my life through the prism of this perspective, I can easily see that I am blessed beyond measure.

In a recent conversation, my wife Sarah and I discussed reaching out again to the medical community. My last experience with the medical community was less than stellar. A well-intentioned doctor let me know in no uncertain terms that after the one-year mark, any meaningful recovery was over, and any gains to be had would be minimal at best. It was a harsh life sentence, it was discouraging, and it was wrong. I hold no ill-will toward this doctor as he was doing the best he could, though he was part of the TBI old school of recovery, one that is quickly being replaced by new science-based treatment.

Over the last few years, there is an emerging body of hard data—factual information—that brain injury does indeed continue for a lifetime. New treatment protocols are evolving for what is called “late stage recovery,” meaning recovery that is tangible even many years after an injury.

This brings me full-circle to our choice to reach deep into the medical community again. It is my hope that I’ll be able to tap into some of the newest information available and use it to continue my own recovery.

Gone is that feeling that a lifetime of recovery is something to be dreaded. A new hope has emerged that I can continue to make more gains, like the gains that have already come to pass over the last five years. I fully understand now that the brain is plastic, and not elastic. It won’t bounce back to where it was. Rather, as remapping continues, and neuroplasticity works its silent wonders, I will continue to grow, to evolve, and to become who I am supposed to be.

Comments (45)

I’m so sorry to hear about your TBI, but am glad that you recovered well. I also had a severe TBI when I was eight years old and involved in a horrible car accident. I suffered a subarachnoid hemorrhage, a broken hip, fractured leg and was in a coma for 24 hours.
 
When I was finally released from the hospital, the doctors didn’t know what to expect. They thought my speech would be impaired, have severe cognitive issues going back to school, and short-term memory loss. Yes, I did have some issues growing up, especially with short-term memory loss, but now at 34 years old (26 years later) nobody would even guess I had a severe traumatic brain injury. Even in my late teens and 20’s, nobody would ever know. I was very bright, got straight A’s, could focus, etc.


Honestly, the only issue I deal with now is sometimes I can stumble on my words, or think faster than I speak. Sometimes I’ll forget words, but I find that reading and doing puzzles has really helped with my cognitive function and memory a lot.

Anyway, I say this to encourage you. Your journey is not over. Yes, it will take some time, but as you said, the brain is in a lifetime of recovery. Try working on puzzles and doing things that require focus (video games are great for this!!). You should be on the right path, and I pray that you recover 100% and can be like you were in your pre-TBI days.

OMG! Your comments were just what I needed to read today. I am only a couple of weeks from the one year anniversary of my car accident. In the accident that totaled my car, the airbags did not deploy so the left side of my head hit my drivers window. Other injuries are much better but my diagnosed PTSD and TBI have not. I went through 18 sessions of cognitive remediation which did help but I am still a long way from my “normal” self. I am on a “brain stabilizing medication” but I don’t think it is helping. I have gone from owning two businesses, traveling internationally to speak and train business owners to working at an $8.00 an hour job (to at least have me interacting with people again - that is the PTSD part) What is so frustrating is that I sometimes can’t do simple “left brain” activities even there. I suspect the next step will; be TMS treatments. The “get it done now” part of me is wondering how long do I keep working to get back to me vs. finding a new direction. Your post was encouraging. Thank you.

I'm a TBI victim since 2000 that still has many side effects up to date.
I'm still in the legal process of the damage-claim after the horrible workaccident which caused this TBI.
At present, the insurance company claims that "QEEG only is useful in scientific context and cannot be of any value on patient-level". In other words, they refuse to accept the results of the QEEG and are trying to rule it out in court. Can anyone help me with legal documents on QEEG that proof the contrary ? I need a very urgent response because of the court-deadline.

Thank you for your encouraging words. My 18 yr old son was in a bad accident and was ejected trough the sun roof of his vehicle and suffered TBI. In March of this year, he had all of the signs of having to have a shunt put in because the brain was holding fluid. With God on his side, the fluid started draining. Now we are still facing the short term memory and no sense of taste or smell. Although the memory is a little better, he still hasn't recovered. He is constantly misplacing keys, debit card, license and so on. He can be getting ready for a hair appointment and forgets to go.

At 17, I had my TBI. August 4, 2010 I was out riding my horse when my mom had noticed that my horse was loose. She found me unconscious, I was air lifted to a local hospital but they wouldn’t touch me because they didn’t have much experience. I was then life-flighted to UC Davis in Sacramento. There I was in a medicine induced coma to control brain swelling. When they first woke me I remember just wanting to go home. I fought like hell to get out of there. To this day if I tilt my head just right I still see double, my balance will never be what I want it to be. But I’m alive and so grateful. To this day I still ride the same horse I had that accident on but with a helmet. I have learned to accept everything that this horrible injury left me with and in the back of my head I remind myself that I could’ve never been found that day. I would’ve missed my high school graduation and all the fantastic opportunities I currently have.

Look into chiropractic care my friend!! I’ve come a long way from a head on collision with a semi in my civic in 2011!!! Most people don’t live through that..

May God give you a more healthier life ahead.

It gives me some comfort to read these posts. I fell on my pasture walking my horse down a muddy path. I remember the slip but not the fall. Unlike most of you the only symptoms I immediately displayed were headache and nausea. I went on about my business for a month traveling keeping regularly scheduled events until I developed bad anxiety attacks loss of bladder sensation numbness tingling and bad memory loss with bad depression. Today 4 months later I am severely incompacitated. Hardly leave my bedroom am incontinent isolated and afraid how could this happen. Two months after the event the MRI showed nothing abnormal yet there is nothing normal about my life want so badly to be me but am afraid the old me is lost forever so frightened. I don’t know how I can live like this. I have lost all hope of ever recovering from this senseless tragic experience

I am so sorry to hear of your troubles! I am 10 months into my TBI. I fell backward sitting down on a chair that someone moved out from under me. Just a simple fall and it has changed my life. But I'm writing to give you hope on the incontinence; I too had it bad. It came on for me about three months after the accident and was accompanied by tremors. It wasn't just a dribble; it let loose, soaking pads! But the good news is that it was a phase that passed and is mostly gone now. I went to a physical therapist who taught me exercises to strengthen my pelvic floor muscles. I discovered muscles I had never been aware of before. Anyway, get help. There's a whole science of PT to help with incontinence. I had some doctors who told me that incontinence had nothing to do with TBI, but they were wrong; it is a common sequela. It is part of you autonomic brain control that has gone awry. I also had phases of tremors, constipation, sleeplessness - all nervous system issues. These troubles evolve and improve. Stick with it and get some therapy. I'm still living with other symptoms, but these have passed.
Best wishes to you!

Thank you for this post and for all of the comments. I was in a car accident a little over a year ago. The car flipped several times and I hit my head in many different areas. I had surgery and met with neurologists. They just told me I had a concussion and that it might take a year to feel normal again. Then I was just left to fend for myself. I took 6 months off of work and then went back full time. I was in so much pain and so exhausted. A friend who is a brain specialist and lives in another city checked in on me after my return to work. She said that there is no way I should be working full time and that I should have been diagnosed for a traumatic brain injury. 10 months after my injury she is the first person who really asked me about my symptoms and understood what I was experiencing. She set me up with a new doctor that specializes in concussions. I began physical therapy for my neck, (apparently it was injured and not addressed) and cognitive therapy twice a week. After 10 weeks I was reevaluated and they said my neck was worse then before. Also my vision and balance were bad. They then sent me to a physical therapist that specializes in brain injury.

I am starting to feel a little better. But after any stress, lack of sleep, or lots of physical work my neck and head really hurt. The base of my head feels swollen. I will be out of work for the rest of the year and hope to start in September.

Reading all of the comments was encouraging but also depressing. I thought I would be better in a year. I didn't think I would be struggling for my whole life.

Lastly one of the hardest challenges is people thinking that I 'look fine.' My cognitive therapist calls it 'the invisible injury'. It's frustrating when everyone else goes on with their lives, but you are stuck struggling with things daily that people can't see.

I try to stay positive and all of the suggestions are helpful. Best of luck to everyone.

I unlike most of you am only into my six month with TBI after falling down stairs in Italy and fracturing my skull in 5 places and numerous other bones. I am discouraged to see that most after years are still struggling with TBI. My insurance has finally decided to refer me to a neurologist. I have lost faith with the medical community. In Italy they left me laying on the emergency room floor bleeding out of my ear for 7 1/2 hours and here 6 months before a neuro. Has anyone done hyperbaric chambers? Are there other things we can do that help? searching for answers

That's how it goes with the medical community. You have to be your own best advocate. Luckily, with the internet, we have access to all kinds of information. If you choose to put in the work, the only thing that stands between us and perfect recoveries is our own lack of motivation and desire. If you want it, go get it.

I’m 1.5 years post TBI. Before hyperbaric chamber I had terrible dizzy spells, vertigo constantly, memory issues, control of eye movements at times, tinnitus, word finding, irritability and so on. I’ve done 11 hyperbaric treatments and I feel much better. I still get all the symptoms but they aren’t as severe. I hear you have to get 20-40 treatments

I was in a MV accident in 1997. My life changed. I sustained severe head trauma and back injuries. I have taken medicine for the head trauma and five back surgeries replacing my upper back and neck with rods, clips of titanium. In April 2017 I fell hitting the back of my head. I lost consciousness. When my husband found me I was lying in a puddle of blood and still unconscious. I was rushed to Shands Hospital Trauma Unit. I stayed it here six days. I sustained bleeding of the brain in the back of my head and the left front lobe. One year has passed and I’m worse today than when I came home. I have severe headaches and extreme dizziness. I get very nauseous and because of past surgery cannot upchuck. I cannot lay on the back of my head because I feel like there’s a ball I’m lying on. My pupils get large when the dizziness is going on. The only reason I know this is because my husband told me. I’ll be 73 years of age in three months and my doctor doesn’t seem concerned. This is no life and I can’t leave my home without my husband. I almost pass out with the dizziness and head pain. Since 1997 I have come up with some strong pain tolerance so I can get by without pain medicine. My story continues with other symptoms but am going to stop because I can hardly focus. But this is my life.

My TBI occurred on June 19th 2017 I am told. A ladder clasped with me on it. According to my work phone I was unconscious for two hours. So I am new to this. I get frustrated very easy trying to remember where I am going or doing, spelling words, or as some have stated here making intelligent sentences. I was in college as well a the time 4 credit hours of completing my masters degree in theology, which has come to an end. I cannot remember what I read to pass a test. I have also noticed lack of interest in things I used to do is this normal? I was told to grieve who I used to be and embrace the new person I am trying to be. I like the old me and fighting to get it back, but I am starting to see that is not possible right now and may not be for good. They say I went through a stone wall head first, thankfully I the hard hat did its job for the most part I am here breathing, it was not the initial impact but the the secondary wave that caused the most damage to the right side of my brain. I am sadden cause it as affected my ability to support my wife. I am thankful she is supportive and understanding in this time but I can see it weights on her, and leaves me wondering what happen. vertigo sucks, ringing of the ears, and all other symptoms that accompany a TBI are least desired.

Terrell, I am over ten years out from my TBI. At the beginning, my children would remind me to cook dinner three times before I would get to it, and sometimes they would call me to remind me to pick them up from school.

What was my career? Being a therapist for highly gifted people. It was a long fall down from where I was, and for several years after my accident, working was not an option.

The good news is this: every six months since my accident, I see improvements. After about six years I began building back up my practice, and today I have a strong career in my chosen field.

None of the improvements came easily. I've worked with a great speech and language pathologist (best therapists for brain damage), and I've never stopped pushing myself to improve. About a year and a half ago I started forcing myself to read harder books again. I do not enjoy reading, and reading used to be a significant part of my life. After my accident, I was unable to continue reading a book on neurology that I had been passionate about before the accident. During the first five years after my accident, I would open that book once in a while, to see if I could read it yet.

I couldn't. I gave up. Put the book out of sight, it only made me feel bad.

But a year and a half ago, a new psychologist told me that my reading skills (and most everything else that gets messed up in TBI) will not come back just with time. But they will continue to improve if I continue to push myself to read stuff that is hard for me. For years I barely read books, only articles. Now I can read whole books again, and the level of those books continues to rise as I push myself to work at it.

I miss the old me. I do. But with a lot of work, I've come to appreciate the experience I went through, and the limitations I was saddled with, as ways to better appreciate and understand the challenges of others.

It took me 8 years after my accident to be able to manage taking graduate courses again, but I did manage it. I was told it would never happen, and luckily, I did not accept that diagnosis. It might take you years, but at some point in the future, you may be able to go back and finish that degree. Of course the university will have rules about not waiting so long, but talk to them about your TBI, and see if they will make an exception some day.

You studied theology because you felt it had something useful to say. Now you are personally experiencing how it feels to have lost a lot, and have a really hard life. You may not be able to finish your degree now, but you can spend your life working out the theological meaning of having your old life taken away, and leaving you with this new life you never asked for.

I'm not trying to tell you to accept that this new life is better.

I'm suggesting that this is the life you now have, and figuring out how to make the most of it, given your interests and knowledge from the life you had before, could make this new life have deep meaning in this world that is not designed for people with TBI's, or anyone else who has serious problems in life. You don't need to give up on becoming a person you can respect, but the only way to do that is to embrace the person you are now, and build from there.

Keep at it. It matters.

Im confident you have sought treatment and upgrades from a variety of avenues (given your style of communication is well reasoned and articulate, laced with active reflection). If you have not already experimented with kinesiology I can only implore u to try it. Im just over 3 years through a TBI regenration. The last 10 months of regular kinesiology have been the only SOMETIMES SWIFT months of discernible improvement. No affiliation on any level (capitalistic or other) with kinesiology. Try a kinesiology session. Radically improved my speech (slurring) and reduced the symptoms of my anterograde amnesia.

The challenges involved with after-care will write a medical series in there own right. Well warranting its realm of specialities. My situation is unique in the fact my initial hospital was University of Kentucky/Caridinal Hill Rehab, and from what I can recall they were great. However I released into the hands of my abuser, and when he attacked me and was incarcerated I was alone and low function. I didn't know how to continue care and the doctors statement of " most recovery would be in a year " loomed and was accepted. My recovery is still happening and changes according to my stress levels. Being in a high stress environment causes back petaling, when the level drops the road back to where I was is longer, harder, and more stressful.
At present I am experiencing a psychological break down and can't really pinpoint why it continues. For the first time I can identify the trigger and give it exact day and time but the power it has over my mind is unexplainable and highly stressful on its own accord. After every obstacle I conquered and climbed I want to scream give me a break.
Recently I was enlightened to see these psychological are a constant cycle. The gap between cycles ranging from 1 month to five years. Usually I end up seeking professional help. The line between medical and mental gets so blurred and frustrating. The physical doctors want to blame the mental problems and the mental doctors apply inaccurate or untrained knowledge with applying the physical to the mental. Rural America carries a lot of impact into this, but show me a doctor who will admit they simply don't know.

My struggle has been encumbered in a large way by my refusal in accepting any statement as true and the inability to accept any thing I don't understand. I keep digging till I'm able to connect the dots. Sometimes this must occur in kindergarten terms while at a college level at others. The simpler thing require the most explaining, Frustrating to myself and others. Stories that are missing details, whether relevant or not, are usually followed too many questions, relevant to the point or not. Relationships are to date impossible to maintain. Easy to start but when begin to care I want to understand. Don't get me started on trying to deal with new people, the feel they can unknowing trigger an uncontrollable response only increases my anxiety. If I find a person who can deal with me I seek them in my effort to have control over my public behavior. This recently lead a person to remove themselves from my life, and even though I understand and totally accept responsibility, I hate on my injuries for being the reason.

My major TBI was 22 years ago; it was preceded by child abuse and followed by spouse (domestic abuse). Recovery has been difficult and I experience guilt of the impact on my children. I have recently experienced another round of being overwhelmed and troubled and constant "underating" of the validity by health care professions. In the past I get frustrated and overwhelmed again by a new set of problems, and give up till in becomes unbearable again. I'm advocating harder than ever to stay in it this, but it's exhausting. How much can I take become before the developing problems outweigh the initial problems; considering the new is added to old and I know the actual help will only inflate the crippling weight of existing troubles I'm still managing to hold a lid on.

Expecting another failure over a crisis that never ends. Frustrated with actual basis and insensitivity still existing in today's society. Baffled over my hunt feelings and strong sense of failure.

I am the spouse of a 6 year tbi survivor. My husband fell 14 feet from a house roof landing on his head into a cement floor. He fractured his skull shattered both arms which required surgery. Watching what he went through wad horrific to say the least. He didn't know who I was for months afterwards. He survived and can drive a car, and function mostly on his own. He does forget things easily and word search is difficult. He is on two different anti depressents to control the anger. He becomes extremly tired after working his brain and has to sleep. With all this we are still grateful he is alive and tries to be the best he can be. Bless you all who have to go through this and God strength to those who love you..

About 6 years ago, I fell when my 6 ft. wooden stepladder broke. I was reaching through the "scuttle hole" and pushing a box into my attic. I knew better than to lean on a ladder, but I did. I landed squarely on my face on the garage floor. With no one home, I crawled to the kitchen sink with blood pouring out as I went. I had 8 broken bones in my forehead and face and was not terribly traumatized by this.

Two years later, I fell in my house and didn't wake up for 6 or 7 hours. A tennis ball size lump, and unaware of surrounding and time, it took 5 weeks in the hospital to get back to "normal." I still don't have fine-motor use (played piano for 65 years, no longer have the necessary coordination, can't write legibly) but I am still drawing breath daily and proceed with "cautious optimism.

Crosswords and word finds are a little difficult at times, balance problems off and on, short-term memory up and down. It's not like it used to be, but life is doable and mostly enjoyable.

If this is not the truth i don't know what is: Typical of so many, I have ongoing memory challenges, often more significant than most realize. Word-finding challenges and aphasia are my constant companions. Add a splash of vertigo and half a cup of tinnitus....... the one thing that sucks is when people aren't suffering from long term concussive issues, they say, "Oh I deal with that too." It's like honestly not like I do... when I know the word I want to say, I use to know the meaning, I was able to form sentences clear, correct, and articulate and now One of my hardest obstacles is to form a complete articulate and sensible sentence.... it's harder to explain what I'm trying to say now; I could explain so much in a matter of three seconds and not mess up once unless I was nervous.... but thank you author this was a motivational for me.

"the one thing that sucks is when people aren't suffering from long term concussive issues, they say, "Oh I deal with that too.""

Oh I'm so hearing you. It really really really sucks.

David and anyone interested, please look into qeeg-based neurofeedback. It made me the 1 in a million. Loreta and classic power training are both reputable, data-backed methods. Be skeptical of neuroptimal, anyone who wants to work without a qeeg and anyone who trained to use the equipment in a weekend workshop! I'm convinced from personal experience and from the stories of many others that cranio-sacral plus neurofeedback is the most powerful recipe for recovery as long as the skull is not broken. It's hard to walk the path between acceptance and defiant hope, but getting back your whole self is possible for many with this. It is expensive and not covered by insurance, qeeg can run 300-1000 and each session anywhere from 70-200, but I don't think you can put a price on getting your brain back. I went into debt for it and I would do it all over again.

Aloha Mary,

3 years on through active recovery from my TBI.
I have never heard of qeeg-based neurofeedback.
Personally googling now.
Im based in Australia.
Can you tell me more..
Thanks, ben.

Apparently after 5 years a noted minor TBI, my brain has not bounced back to what it was. Some days are more a challenge than others and some days I think I am normal again?
I had a QEEG done which discovered this injury to what I was trying to tell my doctors. Antway look up Biofeedback EMG activities as this did help. EMDR was also a help.
Good luck its a journey

This post gave me some very much needed hope. I am grateful to you. I welled up with tears of happiness after reading this.

Thank you! Thank you! Thank you!

Your fellow TBI survivor,

Mary

There are therapies available that have helped many people with different neurological issues many years after initial diagnosis, including TBI. Check out HANDLE (Holistic Approach to Neurodevelopment and Learning Efficiency), a study was published in 2006 in the journal of neuroimaging on TBI survivors.

David,

Thank you for this post, I am 5 years out from a bad motorcycle accident and in the last few months I have started experiencing memory loss, mixing words up in sentences and trouble remembering words (google is my friend). I wasn't sure if it's my age (I'm 48), remnants of the tbi, or the start of dementia (which my father had).

Reading this makes me realize there is hope, and I will be contacting a neurologist. Thank you

Margie ~ 5 year survivor

My husband suffred TBI 7 years ago, Its been a tough life after that . But I have seen him recover every day . I am hopeful of his near to complete recovery . As he gains more experiences post accident , he would regain the mental strength. He is already back to his business albeit recovery is very slow . ..

My experience mirrors what previous posters have said.  My husband suddenly developed a seizure disorder, probably from an infection that the doctors couldn't see or test for at the time.  He is recovering from the after-effects of an encephalitis-like mystery illness. The illness caused seizures (status epilepticus), severe enough to put him into the hospital and a 1 week coma to stop the seizures. Those seizures caused brain injury. Not a physical bump, but a medical bump on the head, so to speak.  He is about 4 years post-illness and still struggles with short term memory issues, a 20 year blackout/amnesia, aphasia and cognitive problems and executive function issues.
Yes, he improved greatly since his discharge from Neuro Rehab, but the long term prognosis is not for a full recovery, nor will he likely ever drive again, as his seizures are not going away.  
We were also told the 12-18 month mark is the end of recovery. Thankfully that was not the case but it did require a lot of intensive therapy, rehab, and pushing him to eke out more functionality.  It's hard, no doubt about it, but even minimal continuous recovery is better than stagnation or regression.

I am a year out from my TBI from a car accident, I was rear ended.  The new scientific advances are hopeful and so is my faith in God.  I have a team who embraces the alternatives.  10 months after the accident, my doctor suggested Low Intensity Light Therapy (LILT)and it made a huge advance in my recovery.  Combining the LILT, with cranial sacral therapy, chiropractic and deep tissue massage also has enabled me to work again, 12 hours a week instead of 40 but it better than nothing.  However, the CSF pressure is not gone and prevents me from fully functioning, so now its a Shunt to relive the pressure on my brain.  Hopefully this is the key to turning the final curve in the road to recovery.  I pray and put my hope and trust in God each day. 

I can affirm that I myself am blessed with a tbi! It sucks but I keep on going. I had to teach myself how to tie my shoes again. Eating was hard too. The mood swings are f****** hard. I taught myself everything that I once new AGAIN!! All I have to say is "turn that frown upside down."

I have a nephew who had a tbi last year. I love him so much. His mom is taking care of him. He had a very hard life before his accident. He was a very heavy drug user. He remembers his old friends now and calls them. He is very loving and trusting. He sleeps with the "just" he says. He has no addictions now. However I am very concerned about his mom pushing hime to see old friends. Of course they tell him they are off drugs now. Some are I am sure. I know his mom is trying to keep him happy but you have to be careful with stuff like that. He is supposed to go to a tbi center and stay to help him more but he has not gone yet. Do you have any advice to help me help him and my sister? I am very concerned. Thanks. KDH

I could relate to this so much. It's been almost 8 years of recovery for me- a rollercoaster most of the time, mind you, but still recovery. Life is very full today and I am overwhelmed with gratitude more days than not. I had the opportunity to study abroad the summer of 2015, I graduated with a BA in education for early childhood through 6th grade this past summer, and got engaged to a wonderful man last Christmas. Life has played out in my favor in ways I had never even imagined. I truly believe the key is to stay positive and never give up. While reading your article I looked up the words aphasia and tinnitus. I most definitely relate to experiencing both pretty frequently, even today. Thank you for enabling me to expand my vocabulary!

This makes me want to cry, with happiness. I'm not alone with TBI. And to know there is hope for more improvement Also very informative. It's been a little over a year for me. Thank you for sharing!

The stories sound so familiar to mine. I was on a scooter victim of an illegal left hand turn SUV only 2yrs ago. Misdiagnosed and sent home with a TBI. I have also heard all the talk western medicine has to offer. This is your life now get used to it. I too came from professional position and not at all happy with no time line of recovery. One thing that did help with my speech, language, word finding was High Performance Neurofeedback. This is what they have been using on the NFL football players and it seems to be helping me. Dr Rozelle look him up, cranial sacral therapy with meditation is also working. What to do with Headaches, dizziness, balance, and back pain. though just had another round of epidural injections . I hope to find a replacement for these too. I am always looking for natural way to treat myself to get rid of the poisons they try and have you take.

I think I did read once you accept yourself and get rid of the anger and the questions why you can move on. Some people never get a second chance to recreate themselves.

I believe cranial sacral therapy saved me, along with eating sea vegetables and nutritional yeast, taking vitamins B12 and D3, as well as an alga supplement. Also, a gluten free diet has helped tremendously.

Every word you wrote about your past experiences was like a smash in my face. My name is Irene and I have been struggling ever since I became a 'survivor' of my Traumatic Brain Injury. I don't feel like a survivor, because everything that could go wrong in my rehabilitation process went wrong. Doctors never took my case serious, focused on the wrong symptoms. It feels like a never ending battle and I crave for some peace and quietness. 

Every day is a struggle and I'm still in the middle of the whole legal circus. I'm fighting on 3 fronts at once, I've been suicidal and what not, but thanks to the continues support from my husband I'm still fighting.  

For more info on me or my story I invite you to check out my story at lunasnight.com Once again thank you for writing this down it sheds a small ray of light in the darkness that surrounds me. 
 

After reading I get hopes from my husband he is 11 months post TBI and faces same problems memory issue aphasia but things will improve and each day is new. Thanks for the write up its inspiring.

My husband is 13 years post TBI. After 4 months I was told to look for a personal care home placement for him as he wasn't going to get any better. It was like the Doctor drove a ram into my stomach. I was never one to accept that "the doctor knows everything" and so I fought to keep him in rehab and ongoing therapy. Today he still has memory issues and aphasia but made a full physical recovery except for loss of taste , smell and hearing in one ear. He learned to walk, talk, read and write and got his drivers license back after much hard work to pass the written test. We have traveled to many different places and have had a good retirement together, although it is certainly different than it would have been without the TBI. The medical community still tells people that a year is the end of improvement. We are sure there are still subtle changes occurring and encourage everyone to keep hopeful and don't ever think that there won't be any more improvement.

Wow, what a great piece of writing that mirrors my own experience. My TBI was nearly 16 years ago, here in Switzerland & no-one even mentioned 'TBI' to me. Once I could use a computer again I found out on my own. No rehab, no great understanding, just 'go back to work & forget it'. After a seizure, insomnia & depression I'm unable to work and in a new place now. And I'm learning to like this place. The feeling of 'surviving the day' has gone. I'm fortunate that I didn't suffer much physical damage & my wonderful plastic brain continues to do its best to help me recover. I'm enjoying getting fit, walking my dogs & spending time with my daughter. Thank you 💚

David,

Thank you for the thoughtful post. I, too, think the medical community needs help in improving the outlook for TBI survivors. After reading several memoirs and connecting with other survivors, I'm shocked and at a loss to know how terribly different my post-care was as a patient in Charlotte, NC. Obviously, my surgery and acute care were top notch, as I'm still here, but the after-care was awful. I'm hoping to group together with some people who have blazed this trail and bring better after-care options to those who need it. I'll continue to follow your posts and learn from you.

MH - 2 year TBI survivor

August 10,1980,age 19 and was riding on the back of a motorcycle that was hit by a car.I gave the police the phone number I had as a child in New York state but I was in Tucson,Az.Spent 6 weeks in the hospital.Was in a coma,paralyzed on my right side,couldn't speak,had aphasia something terrible and 2 big black eyes! I had to learn how to walk,talk,think,regain any kind of normalcy.It's been a long,hard fight and accepting the fact that I am different is still difficult.Many people don't understand the battle that is fought daily to be "normal".My temper is often tested;sometime daily and it's difficult to deal with.I feel blessed to have survived an accident that I should have died from but will have to deal with the aftermath forever.I feel blessed to be a survivor and now I know I am not alone.Thank you all for your posts