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

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Comments (811)

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.

Carol replied on

I am 76, and was in a car accident at the age of 23 before there were CT scans or MRI's. I was unconscious three days, out of work six weeks, and went back to my same job in a laboratory. I had a skull fracture, concussions in the front, broke many teeth and survived with no surgery. The attending physician told me when I was conscious that I was lucky because I had my "block knocked off", meaning my skull was off my spine if I understood him correctly. I'm certainly not clear on what I felt like during that recovery time, but remember getting a great deal of sleep every day for six weeks. It wasn't until this year when I had a CT and MRI in search of a diagnosis of what a neurologist said were two possible seizure episodes. He was shocked at what my brain looked like as was the doctor where I was hospitalized. My frontal lobes locked destroyed. I had lost my sense of smell completely for seven years, and now it comes and goes with mostly minimal ability to smell things. But I can't say I understand what else it meant because my IQ was "very superior" and my memory was tested to be 2.5 standard deviations above the mean around age 60 when I was worried about my mind losing its abilities to comprehend. The worried well. I don't recall symptoms, but that may be a memory problem that was happening at the time,...just a mystery to me. The neurologist told me this year that I was extremely lucky that I have had no symptoms up until now. The CT scared me. My brain is acting differently now. I'm beginning to feel things going differently. It is hard to put into words. So I'm waiting. I guess I will just hit the veggies and fruits and legumes hoping for the best. The prognosis for people with TBI is one that is too often a future with dementia. But being 76 means I did well. Shouldn't complain about that.

Janine replied on

Yours is an amazing story, Carol. It seems your life following the TBI was truly miraculous. I hear that things are changing in your brain function now. That must be scary regardless of how fortunate you have been. Please know that my thoughts and prayers are with you.

John henry replied on

And please people realize I need stability and order around me at home ..please quit changing things around that I have grown accustomed to. It is very frustrating

JENNIFER CAPPS replied on

Yes I agree and it's basic respect for others as I was taught but it is ignored and I often wonder how blind or vision impaired people learn to accommodate and tedious detailed repetitive steps that is tiresome to me as TBI PATIENT and domestic violence survivor that is not supported, represented, or advocated as worthy individual that has learned more skills and adapted to deal with matters positively and with success and regain quality of life as individuals that is equally valued in community and roles of intelligence is recognized and prior credentials and education are basic qualifications required to be professional and expert qualified for job and classified as professional status.

However in area I live and have no positive outcome or supportive GROUps that recognize TBI patients as equal persons who are worthy or needing assistance but it's rudeness of the south as its current situation and courtesy and basic respect if others are vanishing completely as general behavior and it's simple to nor move others things and inside their environment and chairs and tables are not kept where they were placed and it's cruel and it should be labeled as it is. But if I was to move entire home around that wasn't mine it be acknowledged as awful behavior of my person and as my disability made it unpleasant experience and I not got anything except more issues and tasks but I know they get moved by others constantly also. Thanks for your attention and please be aware of respecting and leaving stuff alone that isn't yours or an if your business.

Amanda replied on

I'm glad that I've found this website and particularly this article.

I suffered a large right-hemisphere subdural hematoma as the result of an assault. Fortunately, I was in Trauma ICU when a series of seizures landed, and a neurosurgeon was on-site. A prompt craniotomy probably saved my life. If I was elsewhere at the time, the outcome might've been really bleak.

It's been six weeks since the injury, and I notice changes that frustrate me but others either shrug off as me having an "off day" or might be too polite to point out. For example, my short-term memory has always been hit-or-miss but now it's worse than ever and impedes basic daily functioning. I also have language difficulty that I didn't have before. I've trouble gathering thoughts and communicating in a linear, cohesive fashion.

I hope with time and practice this will improve. Another oddity is a pervasive knocking sound, it's like a tiny carpenter inside my skull busy building furniture. It does coordinate with my pulse, and I mostly hear it while lying down. I wonder why this happens and if it will stop.

I appreciate this article because I can share it with people and it will be able to explain some of the things I'm experiencing.

Katy replied on

heya Amanda, that knocking sound with your pulse sounds like pulsatile tinnitus. i'm so sorry to hear you were assaulted. wishing you the best in your recovery. :-)

Donna replied on

It has only been six weeks and you're doing great. All you have mentioned does happen after a TBI. Your journey has just begun. I have faith you will do well in your journey⚓

Dominick C replied on

Let me start off by saying that these are very helpful to family & friends overall in understanding me and TBI .

My story is back in 2014 I went in for a DR visit for an upcoming neck surgery to fix a C5/6 herniated disc . A better MRI was needed before the operation could be performed. In having the better MRI done , a golf ball size brain tumor (on the lower back of my head and upper spinal chord) was discovered. Fortunately the tumor was non-cancerous but appeared to be there awhile. In removing 80% of it due to it being attached to my spinal chord and wrapped around my jugular vein, (per the Neurosurgeon) the other 20% was determined to be too dangerous to remove and left alone. After the surgery was complete( which took shy of 13 hours) I was left with my Cranial Nerves 7- 12 either destroyed and/or damaged. I lost the ability to walk , stand , swallow/eat/drink (A Peg tube was put in for all intake and nourishment purposes), hear (right side only) write (again right side), speak clearly and without difficulty. A weight was also put in my (right side) eyelid to help it close shut, being it no longer shut all the way on its own. A lot has happened since 2014 to now , many surgeries and procedures to list have happened. I now can only walk/stand with help and at a very short distance when I do walk. I can swallow just a little bit due to a special surgery performed at UCLA. I have lost complete sight on my right eye, but have gained about 20% of my hearing back. Everyday is a struggle of some sort , with old & new ailments ,but as stated above , some days are better than others .I take it one day at a time but have the love of family & friends......For that I am thankful !

Eli G. replied on

As a guy who used to have a craniopharingyoma, I understand -(albeit unfortunatley)- pretty much everything you're going through. I'll support you all, even in death.

In my prayers,

-E.G.

Zenette Steele replied on

Wow I was amazed this is the true fact of what I experience on a daily basis , Thank you

Dave Millett replied on

Thank you everything you say is happening to me finally someone else knows what is happening to me

Valerie replied on

I am using CBD from Fat Pig Society in Ft. Collins CO for pain. I use 1/4 teaspoon three times a day and it has helped me become "normal" with no pain for weeks at a time. The guy who hit me never looked up from his phone. My life changed in an instant and his went on. I had tried CBD from other places and it made the headaches worse.

Thank you for defining this for my family in this simple format. I'm forwarding it to my daughter and friends who want to support me but still think the old Val is coming back.

Preston replied on

Thank you for articulating these symptoms so clearly. I suffer from the effects of a closed traumatic brain injury as well. I endorse everything you wrote however I would like to add one more fallout symptom. I am measurably more frustrated with even the littlest issue, much more so than before my injury.
Thank you again for this well written piece.

Donna replied on

Thank you so much for your input. In addition to the above article, this is exactly what now happens to me now since my closed head injury and skull fracture 6 years ago. This is a great article that describes how, what and why to everyone and provides so much truth to what is really happening to a brain injury survivor. Take care, stay safe and God bless to everyone!

JC replied on

well written and helpful to us survivors to show friends and family for them to better understand. thank you

Robyne replied on

I was in an accident in 2006. I was diagnosed with a TBI. I had a brain bleed in the right frontal lobe. I had just about every symptom that I’ve read about. The doctors said that I would need help the rest of my life and to kiss my old self goodbye. I was actually given a book and told that the old me was dead so I should get used to the new me. I told them God is bigger than brain damage. After 3 1/2 years I was somewhat better, that’s when the doctors all said there wasn’t really any more improvement I could expect. I had slurred speech and visible tremors among many other symptoms. I was not in a good place. I decided to go to a hyperbaric chamber. The doctors laughed and said go ahead if you want to waste the money. I went for two dives a day, six days a week for a month. I popped back into myself two weeks later. That’s the only way I can explain it is that I felt like me again. I had to catch up with time again and that was hard to do because no one understood. Most of the 3 1/2 years is a blur, but I remember some of it. I was pretty much back to my normal, not experiencing any of the symptoms that I had. I was driving, going to the grocery store, basically doing everything I did before the accident, without any problems including my memory. After several months I got sick with congestion and my homeopathics weren’t knocking it out so against my better judgement I went to a clinic with a regular doctor. I explained that I had previously had a brain injury and that I was better after going to a hyperbaric chamber but he chuckled like he didn’t believe me and handed me a prescription. I had it filled and took one tablet. That night it felt like I got shot in the head. I had a relapse and it lasted about 6 months. By this time our insurance had long dropped us because of the cost so we had been paying everything out of pocket and I couldn’t go back to the hyperbaric chamber because of the expense so I’ve been doing the recovery on my own without doctors. I figure they didn’t help the first time so I don’t think they’ll do much good now. I have recovered mostly. I have a problem with time management and I have some short term memory issues but I function pretty good. I can’t draw as well as I used to but I’m working on it. I stay positive because I believe I’ll get back to the full me again. I do get fatigued when I do too much for to long and too much stress brings on brain fog. Regular exercise helps in so many ways for me. I would recommend going to a hyperbaric chamber simply because of how much it helped me. It may not help everyone but it may help some. I would suggest researching them because they are not all alike. I would encourage anyone who reads this that there is hope for recovery. Be patient with yourself and be kind to yourself. I am so amazed at how our brains can go through so much. I remember when I couldn’t comprehend what was being said to me. I have come such a long way and I will not quit on myself. What I have learned is that we are capable of relearning we just can’t give up on ourselves even if others do. There was a time during the recovery process when I was very hard on myself. I was always a very independent person. For me, my faith helped me go through everything and it’s still helping. That and my incredibly patient husband. Be encouraged there is always hope.

peggi breen replied on

Thank you and needed to hear your story. I suffered TBI a few times very bad one in 1977 and 2006 they were amazed how I made the progress I did and came out of it alive - but my dear husband tried to help but didn't understand and that's okay but my faith has I believe given me a strong attitude not to give up since my actually 4 TBI's another one in 2003 when my dog pulled a 50 lb computer down on my head splitting the back opened and stitched but was told had a narrowing of the canal to me meant nothing but now this year with stress and high BP and cholesterol was the big part of that narrowing canal I have now found what it is - I suffered a major stroke and the Carotid Artery is blocked so now know what they meant narrowing. Also suffer with Temporal Artritis and still have to be very careful as get TIA's and left a high risk for another stroke. But it is so amazing when read everyone's posts and how far we do or can come - as I do get slurred speech time to time if tired, get frustrated not able to do or want to do what once took for granted. But all and all I think my memory is pretty good as my husband will say bless you as God has but yes do I live in fear of Dementia of course do I do research on it yes as I think it's only normal to recognize the signs. But have also found our complex brains can have that gene as early as the age of 12 and carry it not showing up for years later. Am I going to worry now NO but live every minute every hour in peace, love and with happiness. And just hope other's can understand or learn TBI's or the after affect of a major stroke. God bless to all.

Simone replied on

You have inspired me ..l didnt have an accident onlyban aneurysm andcan 8 hour operation to clip it .l feel a bit messed up in my head ,vunerable ,messing up words feeling confused but just damn grateful im alive but what you have been through is admirable ..WHAT A CHALLENGE ..WELL DONE .XX

Muriel replied on

I also had an aneurism clipped but unfortunately, blood was left at the site , which damaged right side of brain with stroke-like symptoms. I had no voluntary movement on my left side and through physio was able to train left brain to operate left side. I had to re-learn how to walk, talk and focus. The best thing I was taught was to recognize small victories and celebrate them in my own way..a dish of ice cream, staying in my pjs..etc.
I have survived for almost 18 years and although I know my limitations, they are not obvious to others. I still play computer games, especially word types as suggested to maintain/ enrich my vocabulary and do my own aquafit exercises with water
weights several times a week. Don't give up..it takes time but you do get better..

Alexandria Barber replied on

Hi Robyne-
I have some questions as to how bad your first year of the recovery was from your accident. My dad had a really bad accident and has TBI. I would like to compare his recovery to someone else who has had something similar happen.

Amy replied on

I had TBI July 17th told my trauma ctr 3-4 months, I was just told in rehab it's going to take 2 yrs. I was given a neuropsych evaluation it let me and therapist know exactly where I was struggling so I could focus on those areas. I'm not myself any more my thinking and emotions are very different.

Robyne replied on

Hi Alexandria, I’m sorry I’ve taken so long to respond. The holidays had my attention so I haven’t checked back with this site until today. The first year of recovery was very slow and as I said a blur. I remember the first six months I only sat and stared mostly. I couldn’t comprehend anything. I could see when someone was talking to me but it took several times repeating before I understood. I could see boxes in my head, some with words, some with pictures but nothing was connecting. My emotions were gone. My peripheral vision was gone. I saw silver/ white flashes. It was like looking through a tunnel. My hearing was really messed up... sound was amplified and even slight noises hurt. My speech was slurred and inconsistent. When I tried to walk, I couldn’t go any further than a few feet before I was on the ground. The dizziness was unbearable and the spinning wouldn’t stop. I had a really bad and constant headache. My sleep pattern was messed up... I couldn’t sleep and then when I finally did manage to fall asleep it was for only very short periods of time. I have glimpses of that first year but most of it is just gone. I will answer any questions the best that I can. Recovery is slow but possible. There is always hope.

Dave replied on

Thank you finally someone gets it

Tommy replied on

I had a acute acquired head injury in 2009. It was the result of a botched back surgery where the back surgeon nicked the meningal seal on my spinal cord, and unknown to us at the time, my spinal fluid was slowly leaking out into my body, particularly building up in my mid lower back. In the initial phases of the leak I got very dizzy and in the middle of the night I got up to go to the bathroom and instead took a header directly into the metal door jamb. Fortunately with a quick thinking spouse and amazing life flight services I was saved. (My neurosurgeon told my spouse that had I been twenty minutes later I would not have lived.) I thank God for the miracle of timing and people everyday.
My recovery was complicated because two weeks after the crainotomy and surgery for the subdural hematoma, I had to have emergency back surgery to close up the spinal cord. Added to that I had a not too uncommon stroke a year after the brain surgery, which severely impaired my speech and ability to walk.
The one thing my neurosurgeons and occupational therapists agreed upon after all of this was that I was the smartest patient they ever had, that I appeared to get more intelligent with each recovering day. My pre head injury IQ tests vs my post head injury IQ tests bore this out. The theory has been that it is because I was a professional musician for some forty years when this injury occurred and I had alternative neuro passages that were tapped for use when the AAHT occurred.
However, I had challenges in recovery.
The headaches were the worst. But as time passed post injury, they became more manageable. For me the most stabalizing of all medications for the headache management was neurotriptyline. My neuro team introduced this while I was still in recovery. I didn't realize that it was an absolute must for my pain management and headache stabilization until an incompetent Doctor took me off of it. He had no idea what he was doing. After the protocols of medications ran out of my system I was in abject pain and misery. Anyone who has suffered true head trauma headaches understands that pain medications do nothing for the trauma headaches. So to have a system that was working flawlessly removed was devastating. Eventually after a change of Drs. several times I was back on protocol, I was doing well again. My advice is if you find something that is working, don't mess with it. That means don't take any new medications, nothing. Stay with what is working no matter what.
My Doctors and Family tell me they learned from me and got strength from me because I was strong and never gave up. Having a positive attitude is something you have to work on, even when you don't feel like it, because it is going to make all the difference in your physical recovery. It is the most major investment you have to make post head trauma. If you can not remember, which I had from time to time, place large notes around to your self "Keep your attitude up!" "Stay Positive." And at the same time you are working on that positive attitude be kind to yourself. Rest often. Stay away from drama and stressful relationships.
After five years I was doing well. I am nearing a full nine years post trauma. I recovered my speech completely but it took three years. After the stroke I could barely walk, but after a considerable time I moved to a walker and then a cane, and now I use no assistant devices. My faith in God was strengthened and grew because of the injuries. I cannot express the experience of true gratitude for life. That keeps you going. My wife, my family and some devoted friends have been the daily source of love fuel that keeps me going. I am thankful for them. And during the course of my recovery, post stroke, I had the wonderful experience of becoming a grandfather twice. Putting my little granddaughters on the seat of my walker and walking them around gave me new life and new appreciation for the walker.
Everyday find one thing to be thankful for. That will give you hope. And rest in the comfort that there are people praying for you. You just found some on this site.

Robyne replied on

You are so right. Staying positive and being kind to yourself is absolutely key to recovery. The patient and kind support from my husband and children helped me so much more than words could ever say. I am so grateful to God everyday, not only for my recovery thus far but for being with me through it. I am also very glad I found this forum!

Becky replied on

Amen!

I have a million notebooks full of lists, things to do, music I like, things I wonder if I've completed... I can laugh and cry within seconds of each one. Some things I feel I remember easily, others I don't remember at all.
I do know, for sure, that I miss my Husband and Momma very much.... and I DO KNOW they are my Angels!
Sometimes it's a bit scary...other times it doesn't phase me...
The brain is beyond .....
..beyond a word I can think of...

Alex replied on

I am a survivor of TBI. I have made huge strides in fixing my brain (self-treating the injury).
If you would like to read about the remedies and methods that have helped me, please follow the link to my thread on the Curezone website.
https://www.curezone.org/forums/am.asp?i=2118713
I formerly ran a support group for survivors and their families, carers, workers and friends.
I send my very best wishes to all affected by brain injury. Don't give up. In my opinion, every brain injury can be improved. Get motivated. Try one remedy at a time. Never give up -- aim for the stars. Dream again. There IS life after brain injury.

I. O. replied on

My son had brain aneurysm. After a month and few day he opened his eyes. But now he is not opening his eyes. Do you know why is he not opening his eyes? It breaks my heart

Postal canary replied on

I’m sorry hear about ur son. How is he now? Better, improving I hope. My best friend just found she had an aneurysm. They caught before it ruptured. Then 10 days later after they did surgery, they found more bleeds on the other side. She is 53. Started having bad headaches about 15 yrs ago. It’s been a touchy situation. She had eye problems too. But they have cleared up. It’s only been 7 weeks I’d say. She has to have a stent put in, in another 6 months.
I hope all is well.

Holly replied on

Have they looked for a reason for all of her aneurysms? There are several genetic conditions which could lead to multiple cerebral aneurysms. I had 5. I have fibromuscular dysplasia. I had two craniotomies performed in 2011 at The Mayo Clinic. Also, ehlers danlos syndrome Moya Moya and host of other conditions. They should do a full workup of her arteries...have them check for occlusions. Listen for bruits. FMD is a disease that can effect any of the arterial beds. But it mostly effects the renal and extracerebral arteries of the brain (the carotid and vertebral arteries).

Russell King replied on

I was just diagnosed with grade 4 GBM. I had the big tumor re-sected (removed) and I start chemo & radiation tomorrow. I am sure my brain function will degrade during chemo (I was told it would).

This article is not just good for the family of TBI but also for the patients who cannot find the words to express what they are going through.

Randall fraser replied on

I wish that I would have found this article sooner it is always good to know that I’m not alone and to better understand why I am having so much trouble after my brain bleed

Mirren replied on

Thanks for this article, and to those who wrote about their experiences in the comments section. For my mother's sake, I wish I had found this sooner - but I am grateful to have found it now - I have a lot of changes to make in my behaviour.

Angela replied on

Hello,

Everyone is in my Prayers, I really hope that my Family will read this article, and my Prayer for everyone is that they have Understanding and Loving-Kindness around them. I am so glad that I was given a link to this website last year, I was going through tough times and still going through some tough things. This website helped me through some really tough Life Stuff. Things are getting better, I just got to have Faith and take one day at a time (sometimes one Moment at a time).

Know that you are not alone and Everyone is in my Prayers.

Thank You for this resource this gives TBI survivors Hope and helps remind us that we are not alone.

Sincerely,
Angela

SG replied on

I had a massive TBI 2 years ago am I still struggle with the symptoms of it: fatigue, memory loss, personality. Its a struggle, and I don't know anyone near me with a TBI, so it's hard to explain to people why I struggle to recall information and have a hard time concentrating. I hope to find a group with people who are struggling to recover after a TBI, so we can support each other.

Debbie replied on

Hi! I had a TBI too had a crainiotomy 2 years ago to remove a CM from my brain stem and now I have many deficits

Parsec replied on

I also had a concussion two years ago, although it was misdiagnosed for a psychiatric disorder at the time. I was also excluded from university due to low grades rather before the concussion occurred and I experienced a fall causing it (making me have to relearn to think AND walk again T.T). As a bachelor of science undergrad, going from an average student, perhaps not so persistent before, to a much more persistent, responsible person has been an uphill battle that I've taken to with aplomb. But for a lot of it I was in a negative and overstimulating world. I'm not even sure how I made it through the first 9 months with the nerve problems in addition to the chronic headaches, the oversensitivity to basically the entire outside world(noise and light).

I still have problems with recall if I do not manage the correct amount of sleep. My personality for sure changed, I mean I broke up with my girlfriend near the beginning. I worked hard when I was a bit better in emotional composure to go back to her side. It was not easy. I also made new friends, friends I probably wouldn't have before the incident and stopped talking to some too. I really have the most trouble still with multiple lines of conversation. I have trouble listening in lectures sometimes, the more interactive they are with all the students, the harder it is for me. I have to be very conscious. I used to love these kinds of lectures, now I just can't do it the same way. I have to use video of the lecture to inform me.

I was later allowed back into University where I am trying at this very moment to complete it. I think I've made so many mistakes, I got full marks on one class that needs an 80% pass mark but on others Ive fallen very far behind as result of gut issues that happened later on in(and the resulting lack of sleep necessary to keeping up with classes). I hope they let me continue, it would be best for me. I still want to continue this fight.

You know, I reflect back on myself from time to time to see how I've improved and what I can work on. And I've noticed looking back on my memories prior to my concussion, they don't seem as relevant to me anymore? I remember those things yeah, but they are.. limited because I cant really see them with the same emotion I saw them with before.

Humans are truly remarkable in our way to adapt and get through these kinds of obstacles. It might take some of us a long time to re-route connections in our brains and some us a lot less. I appear to be like you SG, a long time for me and you. Cheers.

Anonymous replied on

I am a highly qualified Scientist/Engineer, I received a very serious Brain Injury in work on the 4/4/2003 in an Armed Robbery, Whilst in the employ of National Car Parks Ltd; in Brighton. I had to start from scratch, no drive to the heart for ten minutes, etc, etc; I have just begun to learn again. I started with learning to play the piano (self taught, no medical help whatsoever, just left to die.) and French. OU studies. Very little appeared to stick, but since the end of July things are looking up and I have re-joined the modern world, what a mess this country is in! However studies are going very well now. Small bites only! Twenty minutes french in the morning 5:00 am to 5:20 am Bath, shopping, piano, swimming one hour every day, then possibly depends on fatigue, the reading of the music will soon let you know, in other words nature will tell you what you can and cannot do, no-one else, so listen! Finish the day with a nice gentle stroll. Finally tune into Radio three or Classic Fm, Also not to forget two trips to Hove and Patcham for two hours singing popular songs from my era? and followed by some Classical Singing in the excellent company of Mr. Simon Gray and Mr Jason Pimblett, Highly recommended for those that have experienced a serious brain injury, Signing out, Christian Morgan. 5th September 2018.

Kirsten Deming replied on

My dad has a traumatic brain injury and I never quite understand why he's always mad. This clears it up a bit. Thank you so much.

Rebecca replied on

What a fantastic article my husband has a hypoxic brain injury and I can totally relate to how he must feel reading this article, thanks for sharing this

Nathan replied on

I found this article and I love it, I have been dealing with my issues for over 3 years now and have found some of the tips that were in this article the hard way after many fights with friends and family. I wish I had found this site sooner as it would have been a tremendous help to me and my recovery process. My biggest struggle is the fact that despite what I show, I have almost no control over what happens. I used to be proactive and ready for everything that happened, I could make plans that rarely had issues. Now it’s like I’m constantly reacting to everything because I’m a step behind and this forces me to react quick and decisively whether I know what I am doing or not.

Mirren replied on

Thank you - what you wrote was very eye-opening for me! - I've got a lot of work to do so I don't put my mom through more hell on top of what she already has to deal with.

Michael J. Gauthier replied on

Our Daughter has been diagnosed With autoimmune encephalitis, You will have to excuse me I've signed up for so many of these types of sites. But this is one of the best reads I have ever read thank you so much looking forward to interacting Thank you so much

Joann replied on

Patience, understanding & compassion are enormous gifts that I get from those individuals who choose to stay onthis sometimes still turbulent journey that I am on - 13 years ago today since the inhuman assault and TBI occurred. To not be treated as child, stupid or incapable are also gifts. However, when things arise that are more challenging for me to comprehend, DO NOT come at me with ”you are using what happened to you as a crutch”! Such hurtful words are damaging, on several levels!! Understand completely, you absolutely CANNOT unless you’ve experienced it first-hand. Find some tenderness from one human being to another. In the big picture, that is what I truly need.

Donald White replied on

Since my injury my wife and i fight every day,if i did not love her i would have left.

Angela replied on

Everyone is in my Prayers, I have to try to make it to group again, and keep researching ways to help for Traumatic Brain Injury Awareness. Getting momentum again after life circumstances is difficult. Got to keep moving even if it is just small things in the beginning.

Just know that you are not alone. So good that there are good informative websites like this one and give as many links out as you can. My Prayer for Everyone to have Understanding and Caring around them.

I am figuring out what I can do for March, TBI Awareness Month, even if its small at first and build on those building blocks. My Prayer for a Bridge of Understanding to Bridge the Gap.

Thank You for helping so many people with this website, This gives us Hope,
Sincerely,

Angela

Denny Hoffman replied on

Have been tested. Told very high probability CTE stage 3. There are only 4. Don’t plan to b around for that. Seen my father in law die from alzimers. It was terrible. I know people try to b encouraging by saying u look good, or ur eating today or what ever. It’s almost belittling my problem. They think that it’s just going to get better or I’ll snap out of it. Not gunna happen. They think I don’t care. And to some point they r right. I do but not like I used to. Caring requires thought and that’s work for me. I avoid people and conversations at all cost. All this stuff requires my brain to process information and it’s tiring. My marriage has suffered greatly. Think she takes it personally. I still love her and want to stay married but don’t think that’s going to happen. I’m just not there for her I know but I’m not who I was. I can’t help it. I spend most of my time alone. I like it like that. I live on boarder of state forest and the animals have become my friends. I feed them every day. They wait for me to get up and come home from work. I love my raccoons. They come up and take food from my hands and just sit next to me and eat. One just held my hand last nite. It made me happy when not much else does. No one understands. And if they say they do; they don’t. The only good thing about this is that I told a few of my family members and we have gotten closer and spend much more time together. I’m 58 and still can’t tell my parents. I hide it the best I can. I’m still in a sport. I average 2 concussions a year and they just right it off to that. Know it’s nor a smart thing to continue to compete but my doctors says dmg already done. As long as I can compete on a high level to do so. It keeps me going. Something I look forward to. I get evaluated every off season. C what this off season brings. I’m just running on now I guess. Idk what my point was. I guess maybe to try to reconnect with family. Put differences aside cause it doesn’t matter any more. Just doing the best I can with what brain power I have left even though it’s all down hill from here. It’s ok. Have accepted it. It’s just really hard.

Claire G replied on

Hi Denny,
Who diagnosed you with stage 3 CTE? I haven't been able to get a diagnosis?

Cappa replied on

My husband had a very bad stroke 4 years ago, unable to use his left leg and arm couldn't walk and it also affected his brain and one eye is blind. He is not able to walk and do things but right now he struggles with understand, trips because he doesn't lift his leg high enough and falls down a lot. I have taken care of everything for years and I am finding myself getting so frustrated with him all the time. I've confessed that to him and I know he cannot help it. I would like some advice as my emotions are getting the best of me. I no longer work and trying to stay on top of everything but I can see so much of it falls my the wayside it gets harder and harder to keep a positive attitude and keep going.

Cathy replied on

In 2005 my 20 year old daughter was in a bad car accident, that left her with a brain injury. In the beginning I was still working and then had to go home and take care after my daughter. After my daughter accident I decided to become a Home Care Worker. My daughter had recieved a regular Home care Worker each day while I worked. Paid by the Government. This was a huge help for me. Even if you are not working. You still need a break. Check with Social Services in your area and see what help you can find to give you relief and comfort. Good luck

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