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

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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 can relate to your share. I appreciate it so much. I had a TBI, a pediatric tbi at the age of 12. I find myself getting frustrated and at times angry when I find out and learn about all of the extra steps and strategies that go into many people with head injuries' IAP's. I struggled with test anxiety, overwhelm, brain shutting down, etc. throughout life after my TBI in school through college and now. It really helps to be aware of the common setbacks after TBI. I'm happy for other people with head injuries that there is help and strategies out there for them. Not sure if the anger and frustration comes from my family not following the Dr's recommendations post TBI or that I didn't find out about until after finishing my undergrad. I can't help the fact that my undergrad schooling took twice the normal 4 yrs to finish, but becoming aware of the limitations and getting help makes all of the difficulties, test anxiety, isolation and loneliness throughout the years make sense finally. I try not to have regrets or get stuck in the past. I forgive my loved ones for doing the best they could at the time. I guess I just need a little help moving on from that so I'm currently in search for a good TBI support group. Brainline has been a big help with this.

Under related content you should include another article from the Framingham Support Group: Having a Brain Injury Was Never the Plan

I have been living with brain injury for 10 years can you help me find legal help as it was used to bully and shun me. It was used on me to cover up brain injuries in a school here in Santa Fe affecting 100 children and myself. I was also injured on purpose; by chemicals and nearly died "I was dead man walking" is how I felt. And just this morning I am feeling what I know of myself; halalulia! your list of help was wonderful and on Patience I would add Love without judgment. and to really listen to us and let us tell our stories with out interference (I'm a humanistic playful psychologist and telling jokes and play are very healing and the earth and environmental connections greatly speed up the healing.

My brotha went through a brain injury and the first Informative piece really resonated with me. As much knowledge i have i can gain more. I read comments on how we much educate others. This must start in school. In Canada, we have the option to choose electives (optional courses in high school and university) but what i see that can happen is making courses that is as important as history or mathematics that can be implemented in school from an early age which actually gives children help and guidance for whatever that may happen in their life (not always having to be a problem but even how to enjoy everyday moments) . It doesn’t matter if they learn a lot, even something as small as doing your bed may be life changing to one child. It is those kinds of teachings that resonate with kids that will stay with them for their lives regardless of whatever that may come their way without a fear or doubt to their happenings because they were prepared to take on a challenge without the need of guidance or help.

Thank you for this article. My cousin was in a car accident almost 2 weeks ago and the extent of his brain injury is still unknown, but severe. We just hope he's still there, any part.

My boyfriend has TBI. He was hit by a car while riding his bike in Central Park. Never give up on loved ones. They are in alot of pain. But take care of yourself too. It's a hard road

My husband sustained a TBI several years ago. Since then, he has had difficulty at every job which he has held. Issues range from confrontation, difficulty following instructions, difficulty following through with tasks and difficulty maintaining professionalism in the workplace. He has recently had a neuropsychological evaluation which suggested that timed jobs are not a good fit for him. In hindsight, I can understand why he has had so many troubles, since every one of his jobs had a timed aspect. He is able to drive, but always needs to use GPS, since he cannot remember places well. He reads well, but may not always grasp the full meaning of some statements/sentences. He can follow instructions which are not compound or multi-faceted. He really wants to find a job which will make him fell confident and fulfilled. Does anyone have any suggestions for some jobs which may work well for him?

Dear 9/20/19. You build confidence through successes and after a brain injury small steps often work best. Think about possibilities related to things he loves to do like hobbies, even as a child, and then how he can get involved in a limited way. Volunteer opportunities often work well to start. They should be much appreciated and they provide a low risk environment to explore the challenges and figure out what might work. Best!

I have lived with a brain injury for 8 years now and the problems with others not understanding is one of my biggest obstacles and unfortunately it’s no ones fault but we need to do more to educate people so when they meet someone who has difficulties in everyday life they no how to respond!!! I was fourtunate enough to have one of the best teams of doctors around me but it took me years to understand that in order to be a survivor I must thrive and accept what has happened and learn to live with what is now a new normal I still forget and get overwhelmed and anxious and yes crowds are still challenging but I wake up and smile everyday because I AM A SURVIVOR doctors said I would never be able to have kids and I have a beautiful 8mt baby boy and live everyday to the fullest even with my crazy brain!!!!

Kudos to you for Celebrating Life after Head Injury! First, we had to educate ourselves. Had YOU ever heard of TBI? Me neither. Begin by teaching your family that you need more time to Process their Questions, let them know what to expect regarding more Time, dealing with Aphasia (they never heard of that either!) & the many "tricks" you use several times each day re: Short-Term Memory. Now, we can BEGIN to educate the Public & those we come in contact with most. P.S. Congratulations on your baby boy!

People are just making me my impossible life more challenging!!!

Useful information shared..I am very happy to read this article..Thanks for giving us nice info. Fantastic walk-through. I appreciate this post.Thanks for sharing....

Wonderful post.Thanks for sharing this information.Keep it up....

This article is truly amazing. My wife suffered severe TBI when she was 17 years old as a result of a hit and run. I have been very impatient and expecting more of her. One thing I do know is that she is actually very intelligent, perhaps higher than average but I have been critical of her many times. This article has absolutely answered every question I have ever asked. I can see that I have done EVERYTHING wrong!! Thank you, thank you, thank you a million times!!! She is actually interested in training to be a rehab practitioner to help others and I was searching to see what training she can do.

Thank you. This article realy helps me towards understanding my husband.

Unbelievable. I am reading my experience express much better than I could. Thank you for posting this. I'll send it to my family (who have been wonderfully patient with me so far, and will appreciate this explanation.).

10 day coma, chemically induced. Woke up without the use of left arm. Skull was put back after brain swelling was down in 30 days. Learned to walk, use my arm again. Minor short term memory loss and partial numbness in left pinky and ring finger but still came back to be a chef of a successful restaurant. No stress, anger, dis-organization or behavioural problems at all. If you believe you can recover, the brain believes it and will heal itself if you have a strong enough will. It takes time and practice but it’s possible.

Very good and extremely unusual to me to either read or especially hear from others or those previously close to me prior to horrendous injuries caused by some driving extremely challenged as I simply rode my bike home after work! It is very beneficial to hear others write about going through the same life altering experience and making it through alive and improving from the low point of the injury. Thank you very much! It is very greatly appreciated.

My niece is recovering in mercy hospital right now..4 weeks since her accident.She was in induced coma same as you.3 MRI's say no damage but it's been 4 weeks she still dazed but doing therapy..Your comment made me feel better..thanks

Hello, your comment gave me a lot of anxious right now, I thought MRI is a tool that can show if you had damage or no. I got assaulted by 3 people and my mri seemed fine. how can i check if i have a problem.

Thank you for this message of hope and encouragement!

Thank you so much for that. I have suffered a secondary TBI and there has been the stigma that hurt me all people first focus on is the emotional part and think it is a mental disorder. It seems that soon as you say brain injury people think omg she or he cannot control emotions and some believe us TBI survivors to be dangerous and that hurts me so bad.

Nothing more for me to say other than "Thank you" !!! ❤

I can't thank you enough for writing this.

In 2014 I was in a car accident where I suffered a blow to the head knocked that knocked me to an unconscious state where I endured multiple seizures. I was out for about an hour and was given the okay to go home from the hospital the next day.

In the fall of 2018, I wrecked a motor bike (going about 60 mph) and hit the road head first with no helmet. Again, I was knocked unconscious where I endured multiple seizures and was out for about an hour. And peed my pants. After several tests at the hospital, I was released. No brain bleeds, skull fractures, or anything to speak of. Except a swollen head and a blurry memory.

I recovered well from this considering the circumstances, but I can't help but feel a little different than before. There's a lot I could say here, but I pretty much just feel like my thought process is very altered. I do small things without thinking like top off my coffee with water or unplug an appliance for no reason. I recognize it shortly after and become frustrated. I also feel that I struggle more with finding words to start sentences and trip over my words often. It's even become almost a joke among my friends. My patience and social butterfly capabilities also seem stunted, but I wonder if this is the injury or just me thinking too much about it. I do feel over stimulated often. Seems like I need more time to process simple sentences more than others. I also get frustrated easily.

I haven't talked to anyone about these issues because they are hard for even me to understand and my injuries have been dismissed. But I also don't want to dwell on them because it is what it is. From what I've read, it seems like we are mostly on our own in understanding ourselves and how our injuries have impacted us. But if we're still living, I think the best we can do is embrace our new selves and thrive on it. I won't pay a lump sum for someone to tell me the things I already know.

I have never written on any forum before. I hope someone finds value in this. I hope we can connect.

One love~

I’ve learned “We wake up with what we have” ! I’ve struggled with learning the new Me! I can talk backwards & spell backwards at times! I struggle for words at times. Since My Cerebral Brain Aneurysm, I’ve come to Understand until it happens to You! ! No one can understand! I wish there were more Compassion, Knowledge & Support for All! (TBI) Someone to relate to, when Family is Hopeless! Everyday must count, there is purpose. To All TBI Survivors we need Support, Strength & Each Other! Thank You 3% ⭐️

I do hope you find comfort in these articles.... please try to find a support group where you can share your symptoms... and please don't underestimate what you have gone through... you are doing well to recognize your limitations and find this website... all the best and don't give up hope.

My wife suffered severe TBI as a result of a hit and run when she was 17 years old. She is now 43 years old. She was in a coma for six weeks. She has all the symptoms that you have shown in your article and I have handled everything the wrong way and the article above has put me straight. Now I can see my wife is not alone (neither are you) in her behaviours and responses and reactions to things. I have been a complete utter idiot BUT I will understand more with what has been written, here. Like you, my wife is actually very intelligent and I see signs of that virtually every day. Thank you for your input

Dear Rachel, 4/25/19; if you haven't found a support group for brain injury survivors, I would encourage you to inquire through the Brain Injury Assoc. in your state. They can be very helpful, a place where people "get it'' and letting you know you are not alone.
Never give up, things can get much better.

This is a well done article! I was actually in tears reading it. I have a VERY large family who often love to have family gatherings. I often do not attend any of them. I am a RUPTURED BRAIN ANEURYSM SURVIVOR! While my family knows that I have changed they often make me feel bad for not attending the events. Reading and sharing this article really helps me understand that what I deal with daily is a real situation and I am not alone! Thank you so much for putting this in writing! #BAS2014

That is beautiful. Thank you. It helped me so much. Please keep writing. Bless you.

THANK YOU! I realize now that many people in my life just do NOT have the time or patience to deal with me now and this is NOT my fault and this is NOT on me. I need to cut those people OUT of my life and MOVE ON to healing.

I NEEDED to read this and I am handing it out to EVERYONE i know and to everyone I meet. And i am explaining to them that I am NOT mentally ill and i do NOT need to be punished or chastised, which is how I have been treated. I am SICK and I deserve COMPASSION. Thank you thank you thank you

my grandad is in a coma currently in hospital after a fall 9 days ago. He has swelling in the brain. we are waiting for it to heal so that he will come out of his coma. Doctors are very negative but i feel he will make it through. anyone else been in a similar situation?

There is hope! I was hit by a car on my road bike and in a coma for ~7 days. The doctors told my wife to expect the worse, e.g., that I may not remember who she or my kids were, may not be able to speak, etc. God willing, I woke up on the ~7th day and, while I couldn't physically hold anything with my hands, I was able to remember everyone and eventually speak. I am a walking miracle and hopefully your grandpa will be too!

God bless you

In my family's experience doctors tend to give you the worst case scenario. Stay positive together for your grandpa. It will be a long road and he will need you all. My sister was in a comma for 2 weeks with severe swelling and had to work hard to learn all over again and 4 years later is still dealing with her new reality but doing just great. Good luck to you and your family. We will say a prayer for your grandpa.

I've been through a lot of this. I couldn't convince anyone, including my doctor, that I was hurt for nearly nine months so was slow to heal and deal with some of these issues. Thank you, I thought I was the only one having issues!

Spot On✌️

Thank you for finding the words, that I could not. This is very informative for all family members and friends. Please continue to post information. It's so very helpful. Thank you!

Thank you. For validating what I have been enduring alone.

Thank you for the great article. I got my brain injury about 3 years ago (I think).
I never would have made it this far if it wasn’t for my lovely wife. She has been a perfect care-taker. She wakes me in the morning, she mows the lawn (sometimes), cooks all the meals, cleans the house and much more. I am trying to do my fair share, but it is hard sometimes. Thanks, God, for giving her to me.

The hardest part is being alone.

You are not alone Jennifer.

I understand better what you go through from reading this article. So very helpful to people with brain injury and their peers.

Almost 4 years ago, I was in a car accident that caused severe TBI. That is brain injury. It was tough for me at first but now I don’t have any of those issues it causes. My memory now is great. I am really organized with most things in my life. Examples would be of my car. I keep up on all maintenance needed and keep it clean. My house, my bedroom, I always keep both of them clean and organized. I don’t feel confused about things. If I am doing something, I stay focused on it. I’m a type 1 diabetic and my A1C is perfect. From a blood test, cholesterol is good, blood pressure perfect, no problems at all with my kidneys. I don’t feel that depressed feeling. The reason why is I battle through all of this to achieve great health and life.

Great article!! Says everything !

I was in a near fatal car accident when I was 17. Was ejected from the vehicle, and sustained multiple injuries. Punctured both lungs, broke 6 ribs, had my left ear cut off, torn acl in right knee, and parietal skull fracture with large amounts of brain swelling. When I awoke I didn't remember a thing. Not even who I was. For months following, I suffered several memory lapses, severe headaches, and nausea. I recieved a diagnosis known as dyspraxia. Basically my brain runs like a 96 escort. Itll get the job done, but its gonna chug and putt the whole way there. The accident was when I was 17. Now I'm 30. I still have issues with mood swings, short term memory loss, brain fatigue, being easily overwhelmed and over anxious. Planning is a big struggle of mine as well as originality. It's especially hard for me to think on my feet if you will. I need constant cues of reference. If you asked me what my favorite movie was, I would stare blankly. I would need you to give me a list and I could tell you which I favored more. Often times I research into arrested development, thinking perhaps it fit my circumstance. At times I feel stuck at 17 with all the responsibilities of being 30.

Sometimes I feel stuck at 12 and I am 40. That was my TBI. I can relate to what you are saying.
At 39 I sustained a mTBI from a car accident and I have been reliving a lot of symptoms from my teen years that I didn't realize were from the TBI. I did not have the best follow up care at 12.

You are not alone I feel like a teenager or a toddler sometimes on my best days....TBIs do that to you. Sadly, so many of us do Not get the care we need. Keep going forward you are a warrior, a survivor and a champion...remember that

Thanks man, that’s a great description (and the 96 escort gag made me laugh:)