10 Things People with a Brain Injury Would Like to Hear...

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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.

Debbie replied on

This is so true I’m reminded everyday of my deficits

Brenda replied on

I have a complex TBI situation, complicated by 20 years of amnesia and misdiagnosis. I had a nervous breakdown. I was without any support and over 60. But I am the only person who can own my reality. I have fought to get the help I needed. No, I won't EVER be who I once was. But I did get cognitive therapy. I got help anywhere I could find it. I still do. I have to. What I can do now after 5 or 6 years of KNOWING and owning this is amazing... sometimes. I have a great TBI therapist and a few friendships. I have 2 doctors that are good. What makes them good is they HEAR me. They know me and see who I was and how far I have come. I WORK at everything I have trouble with, which is pretty much everything sometimes. But that is my responsibility. FATIGUE is my greatest enemy. I want to work harder at problems when what I need is rest. I have helpers who remind me to eat, to not forget meds, to make myself a priority and accept myself as I am. I have been on a long upward path but I overextended myself and crashed after a year and half of progress. I was afraid. Maybe I wouldn't ever get consistently better. But I will. I can. I am back rereading everything and making sure I take care of me. I don't like getting frustrated and angry, but I do recently. "It's the past. Let it go." Or " you're so intelligent but that was a silly thing to say, think, do....". Yes, I can do somethings fairly well. But some parts of my brain are so broken that no matter how hard I work on them, they will never be more than 5 years old, if I am lucky. That said, I WILL NEVER QUIT WORKING MY BRAIN TO GROW. It does. I don't necessarily get to control how or where or when. I do get to CHOOSE to do my best and use every technique and tool I have learned to improve. I do use adaptations, too. I USE EVERYTHING I CAN FIND. What I don't do, is let people manipulate me or disrespect me, or try to make me a good handicapped person. I am a person in process. AND IF I CAN DO THIS, I believe anyone can improve their situation with help. And quite frankly, anyone that is bad for my mental health, is bad for me. I don't have to meet any unrealistic expectations. I simply need to be the best ME I can be. So can YOU! We do need more resources, especially as adults. But we can do more than we think. Let people help you and encourage you. Jettison those who don't. Believe IN YOURSELF! And may you all, those withTBI and those really trying to help you, find the guiding light that is just right FOR YOU!

Kimberly replied on

Thank you for this. Very encouraging. (I am my husband’s caregiver and you have shared some great insight)

Rochelle Amadio replied on

My husband has a Brain Injury due to a large brain bleed and stroke from February of 2019, I am his wife of 37 years and our lives have been altered, Thank you so much for sharing your story to teach me some strategies that I can use to be more
supportive and positive during my husbands time of healing. I am struggling with dealing with his passive/aggressive and sometimes sarcastic manner on a daily basis. I am always striving to learn what ever I can to be a better support system for my husband.

Heather replied on

I liked your comment. I am in a similiar sitiuation with my husband. Dec. 12,2019 my husband lost his life and was brought back. He now suffers from brain injury. He is home and I am so grateful. Being his sole caregiver is a challenge sometimes for sure! My husbands symptoms as far as he used to be towards me is.. He doesnt strike up conversation, he doesnt have complaints or opinions that he expresses. Which is totally different than he was. He is sweet and has a kind expression. I feel like the grump due to all the stress on finances and lack of help from his family. His mom never comes by because she says its to hard to see him like this. I have a hard time understanding or accepting that. I am a mother of 3. They are 23, 21, and 10. We have the 10 yearold little girl together. She has special needs and suffers brain injury as well. Hers is from being on life support and ECMO after she had open heart surgery at 3 days old. We made it threw that together and we will make it threw this! I do miss my husbands personality, and the way we were. I am ever so grateful he is here with us. I put that foremost. Being angry with his mother is something I need to work on. I am overwhelmed and do to want to be bitter! My sacastic husband is now quiet and humble! Lol, thats awesome!!!
Sorry if I told you wayyyy to much!
I wish you strength because change is hard❤

Babs replied on

I just read your story, my husband of 44 years suffered severe TBI in July 2019. We thought we would lose him that night but he survived. He was in a coma for 2 months and in hospital until February this year. He is now in 24 hour care as he cannot do anything for himself. Rehab has started and he is slowly becoming self aware. He has no real long or short term memory and is only just recognising us properly. He has no filter and can be very hurtful at times. He is very negative and today he said I was a nasty b***h, seems he only sees the dark side of things. I have been at his side right through this surreal time in our lives. We had ups & downs like any couple would over 44 years but I feel like he only recalls the downs. I know he will never be who he was but sometimes I am so weary that any small negative comment is hard to take. I still get a kiss hello & goodbye and he seems more relaxed when there are no care workers present and it is just the two of us but then he will get irritated, especially if he is tired and I am the one who bears the brunt of his irritation. He has come a long way and I am hoping that he will progress further. I wish you and your husband the very best for your own journey.

Anonymous replied on

Thank you so much! For someone who is new to dealing with a best friend with tbi this is exactly what i needed to hear!

DavidJ replied on

I have had A TBI for about ten years. Most comments about it hurt rather then help for myself. Maybe attempt to disregard it. Let smaller things slide or just assimilate with the person if I am saying that proper.

Chris replied on

I appreciate your post. My husband had a TBI in 2014. he does not like to talk period. He like to talk about his feelings even less. I love him so much. I am grateful every day that he lived. He is angry and often says mean and hurtful things. He does not realize or remember these outbursts. I do not know how to handle this anymore. I do not argue with him. I just try patience and listening. Inside I feel like I am slowly dying.

Danielle replied on

I just read your comment. My husband suffered a tbi in 2004 & often does the same thing. He is kind and gentle one minute and angry the next...using language thats hurtful & saying things he doesn't mean....i understand your pain & often question " how long can i withstand this"... i would never have tolerated this before but i realize how his tbi has affected his behavior ect. And i love him very much.

Anonymous replied on

I just read your comment. My husband suffered a tbi in 2004 & often does the same thing. He is kind and gentle one minute and angry the next...using language thats hurtful & saying things he doesn't mean....i understand your pain & often question " how long can i withstand this"... i would never have tolerated this before but i realize how his tbi has affected his behavior ect. And i love him very much.

Debora replied on

Chris, I can really relate to your post. My husband fell a year ago and suffered a severe TBI. We have been married for 36 years. He is the love of my life, but I too am having a hard time. He is not often angry and is mostly doing well. But he is different from the person he was. I worry about him constantly. I worry he will fall again. I worry every time he leaves the house. He sometimes makes bad choices and I have to be patient and realize he wouldn't be doing that if he had not been hurt. He is very unhappy and I worry he could be suicidal. Sometimes I just need someone I can talk to about this stuff. I am happy I've found this site. But like you, I am sad and feel like I am slowly fading.

Bruce replied on

I have had a concussion it's hard you dont have good sleep patterns you feel off balance you tire easily you have a tendency to go into your own world noise is loud now light hurts your eyes. You feel like you're not running on all six cylinders it's like sometimes you're mind is driving ok on a hyway then next on side roads. Your taste of food is not good sometimes your sense of smell for me I dont get angry as much as emotional tears easy. I feel for you I know my personality is different I think it has to do with hormonal release from thalamus pituitary and pineal glands in your brain. What helped me alot was better diet organic vegetables grass fed meat fish docosehanionic acid or dha for short brain food build the immune system that nourishes the brain it helps alot at least for me. Get an MRI on the neck I had a whiplash also neck issues cause dizziness balance issues nauseous see a othamolagist for eyes for check up. I was fortunate I was near retirement so just retired early cause pain from neck and exhaustion made it to hard to keep working was a physical job I wish you all the luck. This might be a bad example but women at the time of month go from happy person to angry person its horrmones. They even have specialist that can test for this. Hang in there try some of these things because there might come a time when you can't keep doing this and at least you'll know you tried all Avenue's.

Analia replied on

My husband just suffered a brain injury 4 month ago, caused by a distracted driver, he still at the hospital and we have no family closed to us. This is the beginning for me, I am thinking that it will be a tough and long road for us. All I can say is that I love him so much that everyday I am thankful for having him alive. I am learning to understand him and at moments he is angry, and this is what I say... I don't know how you feel, I understand that confusion make you upset and it must be frustrating to be in your shoes, but so you know, to me you are the same man I fallen in love 15 years ago and we are going to build new memories for us, "happy ones". He normally smiles at me after and he always tells me how much he loves me. It works for me.

Vince replied on

Wow, I have the same experience with my wife except she does like to talk, but sometimes just makes up stories that I know are not true. I love her so much too and am grateful that she lived. She also says some horribly mean things and then apologizes when I tell her about it soon after. She used to deny saying those things so I think it's progress. I am having a difficult time and do not argue or ever say anything hurtful back, only kind words. I also feel like I am slowly dying from this difficult time.

Lu replied on

My boyfriend had a TBI almost a month ago
He also says very hurtful things to me. He too makes up things that I know aren’t true. It still hurts to hear everything he says.
I’m trying to be patient but it’s just taking a huge toll on our relationship. I truly love him & want to see him better.

Denny Hoffman replied on

I know it is difficult for care givers. Know it’s hard on my wife. I don’t like to talk and listen even more. It’s work for us and just something else in the list that we don’t like. We don’t do it on purpose. It’s how we are wired now. We do care and appreciate u all trying and being patient. My marriage has suffered. She feels alone. It’s just not in me to b there all the time. I like my quiet time and to b alone. It’s not by choice. That’s just how it is. Brain avoids a lot of situations. Unfortunately relationships require work which we r not up to sometime. Idk if this helps. My wife got a dog. Guess it her theropy animal. It helps her.

Anonymous replied on

yes, we are rewired, and solitude, is what I like best- my marriage is suffered too- I can't change it, I have tried, but I dont exp the care as I use too. I just want to be left alone. I hate this it's so discouraging, I almost rather not exist!

May replied on

My husband just recently has a TBI too, he has been out of work for a month now. It is painful to see him suffering and not knowing how to comfort him sometimes. He is trying different anti-depressants to see what will work on him but switching meds has been a very difficult ordeal for him and for me. I'm hoping to find some support group as there's only the 2 of us. We don't really have friends and family is far from us. I do not know what to do.

M replied on

I am sorry for how you are feeling, I completely understand. I have a tbi and my husband does everything. I have had mine for a little over a year. It is only us no family not many friends any more. I have tried many antidepressants also. I find 300 MG Wellbutrin has worked best for me. Walking just 15 min a day is a help. I know it is hard but it does help. I also find that tumeric, fish oil and b complex helps. I take ones that are high quality. You can research on amazon. Brain games help also. I drink plenty of water and eat high quality veggies and fruits, limet the meat and dairy. Salmon and some chicken are good options. You may want to research Functunal neurologist. They are very expensive and don't take insurance. If you can afford it, good option. I have to limet my activities rest and take naps. If I overdo it I feel as though I have the flu for the next several days. I hope this helps you and anyone else that reads this post. If you have questions reply and I will be sure to check back on this site.
Stay positive and keep your head up.

Mathew replied on

You should go to a support group. My brother has a brain injury and he has outbursts frequently, but he always apologizes shortly after.

Ruben replied on

Dealing with the stress that a TBI puts on you, is there a way I could accompany/take sessions that would help alleviate your burden and help me understand more?

Damian replied on

I know that you have a brain injury but sure you are fine now

Lynn replied on

A good friend told me this. "You used to be brilliant. It must be hard to be average now." I felt like at last someone understands!! This wasn't mean it was true and real and I was having a hard time adjusting. Here was finally understanding, compassion and friendship.

Diane replied on

I feel the pain and frustration from the tbi stories I'm reading. I'm a caregiver and wife of a very wonderful man.he had an anoxic tbi in 2009.I truly believe that you make sure you keep things as normal as possible like they were before. We've been doing this for 9 years.and honestly my husband has problems with all daily activities. He is totally dependant but that has Never changed how our family see's him.we take him out to movies ,ball games our county fair, music events.all in a wheelchair. He's very alert but doesn't talk now but he uses his facial expressions to talk.And that's great.cause we all understand exactly what
He's telling us.I Really wish and pray that there were more resources for ANYONE that develops a TBI... like rehab , more music and ways of art for you all to be able to express yourself. I WANT YOU ALL TO KNOW I BELIEVE IN EACH OF YOU AND I PRAY WE ALL COULD BRING MORE ATTENTION TO
BRAIN INJURYS...
To our people in local government and eventually the senate. Lots of love

Dan replied on

Do you need some time to yourself?

Maria replied on

I see you walking everyday, I know exercising is not only good for the body; but, it is also good for the brain. Can I walk with you?

Pam replied on

Maria, I wish you were here in Bend! I wish I had someone to walk with. I was out this afternoon and at times wasn't feeling very safe because I was alone. What if I fell? But I can't worry about that ... I just need to get out.

Anonymous replied on

You know, all we can do by ourself is the best we can do... EVERY DAY. It's hard isn't it?!?!

You are a lucky man... you have your wife, she is supporting you! WOW, that says a lot about her. As I'm sure you know, that is exceptional! Great for you!

I feel your pain... she deserves an unrestricted life also! By giving your continued solidarity (not feeling or giving retribution) she knows your true love because you show appreciation! I'd love to talk one-on-one or with a group as I am a survivor also. Dawn at Health South has helped so much but it is up to us to do the right thing and the best we can! Let's feel good about ourselves and happy! If there is anything I can do... Make it a great day! Randy

Anonymous replied on

Get CBD oil. It will heal your brain.

Vicki Curline replied on

What's cbd oil?

Mathew replied on

"Derived from the stalk and seed of cannabis (hemp) plants, cannabidiol (CBD) oil or CBD hemp oil is a natural botanical concentrate that is high in the compound CBD. ... Pure CBD hemp oil is extracted from the cannabis varieties that are naturally abundant in CBD, and low in THC". CBD oil does not provide a high and is meant to be relaxing, you can apply a drop of it on the back of your neck and it will take into to effect in as little as 60 seconds.

Anonymous replied on

I know how you feel. It tears me up to read your story. Hard to explain a tbi to someone that has not lived it. Never give up. Keep your loved ones close.

Anonymous replied on

“I know how you feel.” No, you don’t. Nobody knows how another person feels, especially if you have not experienced brain injury. Even if you have, your experiences would be different. Making this kind of comment discounts what a person is going through. Instead try something like this, “I cannot imagine how you feel.”

Anonymous replied on

In the year 2003 I awoke after a crash in University Hospital to a wonderful loving wife, unfortunately, TBI came with the awakening. Now, after the years have gone by, TBI never goes away, and the symptoms from it have caused a strain on my wife's life too. I wish it was easier after all this time, but it isn't, I am certainly glad to still be here, but in what content, so many things do not compute, I wish I could fix myself, and be the person I used to be. Where to turn to help my wife's life be better and me stay in it too?? I have met so many people who desperately need help, but society seems to only go so far, is there someplace where we both could be helped,..I realize I cannot be the person I WAS, but maybe understand and deal with things enough to be the loving husband I used to be and for my wife, she could understand and cope too, she deserves a happier life as well. Thank you Very Much.

Anonymous replied on

Getting extremely upset when asked the same question constantly, but on different days.

Anonymous replied on

Just an FYI for caregivers-watch for loops-being caught in a cycle of repetition that leads nowhere. This is extremely frustrating and would be nice to have this pointed out, because most times we don't see it. I saw the above comment and had to add. I get stuck in a loop all the time. As a matter of fact that's exactly the word I use to describe it. My poor husband takes the brunt of it and I don't know how to stop it. I see 3 different doctors now. I'm over 3 years POST TBI and I am straining our relationship. How do you stop the loop??

Anonymous replied on

Find someone that gets it. Find someone that understands what you're talking about or trying to say. Good luck

bud replied on

i dont know how to stop it but you are not alone!! just letting you know!! it sucks!!

Anonymous replied on

My ex husband was a very violent and abusive man. He had head on brain injury due to an accident in a swimming pool during his teenage years. His personality greatly changed after that. I wonder... Are all reckless behavior by TBI patient purely unintentional? Does he know that he is reckless and impulsive?

Anonymous replied on

In our case, he knows that he is being reckless and impulsive, but he has lost the ability to use that information to make better choices.

Jeanette replied on

One of the things my family was warned of before I got home was not to ever leave me alone because I would not be able to recognize when I was not being safe. I think that goes with the territory. But not necessarily. We differ, each one of us. I I know I have done things that I recognized was reckless even when explained to me. In fact, by trying to explain it to me I got angry. I felt like they were over exaggeration to make me feel bad. The problem is that the brain does not necessarily recognize its deficiencies. It can be in denial. prayers go out to you and your family.

Anonymous replied on

There are several posts expressing a need for connection and understanding. If anyone whose friends aren't there right now wants to reach out, I would be so happy to connect with you. Even if its just email, I'd love to just talk. My name is Ross. I am a student at Arizona State University. My email is recarlto@asu.edu   

I know this is kind of weird and out there, but please don't be afraid to reach out.

Terry Joy replied on

I had a brain injury last September and this is the hardest thing ever. I found a wonderful psychologist. My husband took me yesterday. I'm just afraid all the time because I never know what kind of day I'm going to have. Big headaches, depression, confusion, crying a lot. My husband says he understands but doesn't always know what to do. I get my feelings hurt very easy. I used to consider myself somewhat intelligent, but now some days I feel just the opposite. The tinnitus is driving me crazy. I think my husband of over 40 years is really having a hard time with me. I'm just so sad..

Anonymous replied on

When I ask for help or accompaniment for a seemingly simple task or walk to the store it would be nice to have that person say sure ok lets go rather than a selfish un-understanding no or brush off reaction as that is infuriating. Like its not embarrassing enough to need assistance for basic ass shit. Add a mental breakdown and full on embarrassment ensues.

Anonymous replied on

Nobody understands me anymore. This is my third TBI. I am fifty two. One of my kids messages me this big note and I can't understand it. Other then I have been disowned. I ca not communicating back because garner mistakes get me in trouble. Everyone laughs. I me if I get a word wrong. One relative keeps saying when are you going to get better, then it all turn religious and stressful. I just wan to kill my self. I even had years of psychology treatment. I am so tired of insurance adjuster on my case bugging me. Now I have a new neurologist that is against the seizures drug I am taking I was about to walk out of the office. He didn't hear anty of my thing about the head ach after rolling a SUV no nun of that matters. All that mattered was that the drug I was taking causes weight loss and that was why I w "claiming" to be epileptic. OM fingers G. This was not my first seizure. Where are these doctors getting their licences. And that is only the frozen water droplet of the iceberg of the shit I have been going through scince 2006

Wrath b. replied on

Keep your head up and never give up.There are still many people who care and know your exact pain and suffering.Guardian angels are looking over you has I type.I know without a doubt that your entire terrible situation is fixing to change for the better.Godbless.

Frank replied on

Your words are encouraging and thoughtful. Unfortunately you said there are people that care and want to help.
True, there are those people, but the fight with insurance companies begins and they don't want to pay for help. Someone mentioned a LOOP in this blog. It's a never ending loop.

Anonymous replied on

You're never going to get well, you're now marked as crazy and people will take advantage of you and manipulate you for the rest of your life.  Nobody will ever give a crap about you, so go find a desolate place and hide for the rest of your miserable life.  This is just an honest truth.  Don't ever get your hopes up.

Frank replied on

Your words are so miserable to hear. But I am realizing after years of looking for help that your words are so F-ing true. I even tried to explain to family and friends what I have, why I act the way I do and they claim they get it.
They don't get it. The medical profession doesn't get it. It is so frustrating. No wonder we want to be left alone.

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