9 Things NOT to Say to Someone with a Brain Injury

Marie Rowland, PhD, EmpowermentAlly
9 Things NOT to Say to Someone with a Brain Injury

Brain injury is confusing to people who don’t have one. It’s natural to want to say something, to voice an opinion or offer advice, even when we don’t understand.

And when you care for a loved one with a brain injury, it’s easy to get burnt out and say things out of frustration.

Here are a few things you might find yourself saying that are probably not helpful:

1. You seem fine to me.

The invisible signs of a brain injury — memory and concentration problems, fatigue, insomnia, chronic pain, depression, or anxiety — these are sometimes more difficult to live with than visible disabilities. Research shows that having just a scar on the head can help a person with a brain injury feel validated and better understood. Your loved one may look normal, but shrugging off the invisible signs of brain injury is belittling. Consider this: a memory problem can be much more disabling than a limp.

2. Maybe you’re just not trying hard enough (you’re lazy).

Lazy is not the same as apathy (lack of interest, motivation, or emotion). Apathy is a disorder and common after a brain injury. Apathy can often get in the way of rehabilitation and recovery, so it’s important to recognize and treat it. Certain prescription drugs have been shown to reduce apathy. Setting very specific goals might also help.

Do beware of problems that mimic apathy. Depression, fatigue, and chronic pain are common after a brain injury, and can look like (or be combined with) apathy. Side effects of some prescription drugs can also look like apathy. Try to discover the root of the problem, so that you can help advocate for proper treatment.

3. You’re such a grump!

Irritability is one of the most common signs of a brain injury. Irritability could be the direct result of the brain injury, or a side effect of depression, anxiety, chronic pain, sleep disorders, or fatigue. Think of it as a biological grumpiness — it’s not as if your loved one can get some air and come back in a better mood. It can come and go without reason.

It’s hard to live with someone who is grumpy, moody, or angry all the time. Certain prescription drugs, supplements, changes in diet, or therapy that focuses on adjustment and coping skills can all help to reduce irritability.

4. How many times do I have to tell you?

It’s frustrating to repeat yourself over and over, but almost everyone who has a brain injury will experience some memory problems. Instead of pointing out a deficit, try finding a solution. Make the task easier. Create a routine. Install a memo board in the kitchen. Also, remember that language isn’t always verbal. “I’ve already told you this” comes through loud and clear just by facial expression.

5. Do you have any idea how much I do for you?

Your loved one probably knows how much you do, and feels incredibly guilty about it. It’s also possible that your loved one has no clue, and may never understand. This can be due to problems with awareness, memory, or apathy — all of which can be a direct result of a brain injury. You do need to unload your burden on someone, just let that someone be a good friend or a counselor.

6. Your problem is all the medications you take.

Prescription drugs can cause all kinds of side effects such as sluggishness, insomnia, memory problems, mania, sexual dysfunction, or weight gain — just to name a few. Someone with a brain injury is especially sensitive to these effects. But, if you blame everything on the effects of drugs, two things could happen. One, you might be encouraging your loved one to stop taking an important drug prematurely. Two, you might be overlooking a genuine sign of brain injury.

It’s a good idea to regularly review prescription drugs with a doctor. Don’t be afraid to ask about alternatives that might reduce side effects. At some point in recovery, it might very well be the right time to taper off a drug. But, you won’t know this without regular follow-up.

7. Let me do that for you.

Independence and control are two of the most important things lost after a brain injury. Yes, it may be easier to do things for your loved one. Yes, it may be less frustrating. But, encouraging your loved one to do things on their own will help promote self-esteem, confidence, and quality of living. It can also help the brain recover faster.

Do make sure that the task isn’t one that might put your loved one at genuine risk — such as driving too soon or managing medication when there are significant memory problems.

8. Try to think positively.

That’s easier said than done for many people, and even harder for someone with a brain injury. Repetitive negative thinking is called rumination, and it can be common after a brain injury. Rumination is usually related to depression or anxiety, and so treating those problems may help break the negative thinking cycle.

Furthermore, if you tell someone to stop thinking about a certain negative thought, that thought will just be pushed further towards the front of the mind (literally, to the prefrontal cortex). Instead, find a task that is especially enjoyable for your loved one. It will help to distract from negative thinking, and release chemicals that promote more positive thoughts.

9. You’re lucky to be alive.

This sounds like positive thinking, looking on the bright side of things. But be careful. A person with a brain injury is six times more likely to have suicidal thoughts than someone without a brain injury. Some may not feel very lucky to be alive. Instead of calling it “luck,” talk about how strong, persistent, or heroic the person is for getting through their ordeal. Tell them that they’re awesome.

Posted on BrainLine October 10, 2012. Reviewed July 25, 2018.

Written by Marie Rowland, PhD, EmpowermentAlly. Used with permission. www.brainhealthconsulting.com.

Comments (418)

Speaking from the person on the other end, aka the girlfriend with a TBI who had a boyfriend, also named nick, (would be super weird if you’re the same guy) that did the exact same thing. I understand that this is incredibly hard to process for you as well however you have a brain that’s full functioning and able to process and she doesn’t. If you’re girlfriend is like me, shes going through the darknest, most painful and horrific moment of her life and she needs all the help and support she can get. So please, try to find a way to show up! Be there because the TBI’s and all those symptoms lead to such a crippling depression which honestly the only thing I think would help me most of the time is to be held tightly during those times I fall a part and then laid next to during the night hours when the thought of another day coming feels crippling. So if you could, and if you do really absolutely love her, then try and practice that love with action by being there for her. And I say this only because I believe love/ unconditional love is the worlds most powerful healer...better than any fucking drugs or therapy. (Not saying those things don’t help) but love is the ingredient for life’s biggest challenges and she going through hers! So give that to her, show that , be a part of her team because that’s part of the fuel she’s needs to keep going so she can reclaim her life.

It sound like you are all going through a very hard time, I would suggest reaching out to friends and family for support as well as a counselor who can help you both sort this out. The Brain Injury Association has local offices all over the place and they offer a great support network, not just for those who have had the brain injury but for those closest to them as well. BIAMA.org is their nationwide site. I hope things get better.

Amber, I will have to apologize, but I've fount BIAC (Brain Injury Association of Colorado) to be almost worthless to a TBI survivor that doesn't need help getting a place to stay, doesn't need help getting SS disability. I want to talk about the issues I have in dealing with life. Strategies for driving the rewiring of my injured brain. My group offered nothing like this, so I quit after three years. And I'm now 10 years post Severe TBI.

I have found Psychologists (Counselors) to be almost worthless. They can't prescribe the medications a survivor needs to get back to living.

Whether the Survivor likes it or not...the old adage of "better life through modern chemistry" is exactly right.

My life has been so much better since doing a 72 hour Mental Health hold in my local hospital. The Staff Psychiatrist was so much help because people like us make up a fair portion of their patient load.

Her changing my medications, dramatically upping my Venlyfaxine anti-depressant from 30 to 150mg/day has made a huge difference in my life. I'm happy, I can take on projects and complete them. I can be with others without my TBI showing up. Just feel good and know that I'm doing good!! Some people are a bit wowed by the 150mg dosage. After the first year my PCP allowed me to vary the dosage and then choose what worked best for me...wound up back at 150mg/day.

Now for men anyway, it can give you a great case of anorgasmia. But there are ways to deal with that.

So get this person the help they really need, as I have described is working so well for me, and hopefully life will get much better.

Oh, and I'm a survivor so I ramble...but she (I can't remember he or she) needs to realize who they were pre-TBI is gone and they are now on a voyage of discovery to learn who they are today. Mental fatigue means limiting your days to the number of hours that don't cause fatigue to lead to anger. Gotta learn when to say "stop".

I am two years out from my TBI, and just recently have been diagnosed with having epilepsy! I have a hard time accepting my new normal , but I am very fortunate to have a loving wife that loves and accepts the new me! I am sure she has to bite her tongue quite often, but she does willingly! The people at work don’t really catch or understand how hard a TBI survivor has to work every minute of the day just to keep their head above the water! Losing short term memory, forgetting the reason you walk into a room and coming back 3 times before you remember, having thoughts run through your head like a pinball in a pinball machine or how little things that would not be stressful to the normal person become giant to a TBI survivor! My goal each week is to make it to Friday,so I can sleep all weekend so I can make it through the next week! I am paranoid in large groups - don’t really know why, it may be I am worried people will notice I am different, or that I am afraid of having a seizure in public!

Work with your Dr to find an anti-convulsive that works for you. Mine is Oxcarbepazine, 300 mg in the morning, 600 mg in the evening. Its also a mood stabilizer, and that really helps.

Its not wrong at all to tell your co-workers that you are a TBI survivor and that for all of us, mental fatigue is a big issue. So we jump into the real work in the morning, and do the lesser things towards the end of the day. For me, the last three years of work about a six hour day was it. But I was there for 10 did the best I could, and that's it. Now in retirement it can be even more difficult. I sometimes beat myself up for not getting enough done in a day. Here on my place I used to work 15 to 17 hours a day getting the place built up. Well, its still about 6 hours a day and I have to learn not to be hard on myself. Hey we are still alive aren't we?

I've always been a person of lists. I've gotten a "smarty phone" and learned how to use the Samsung Notes app and the Google Calendar with reminders to keep me on track with life. Just takes a bit of getting used to.

No you've got to stop sleeping all weekend. You have to get out in the world, experience new things. That's what drives the brain to rewire itself...and that is probably them most important thing in TBI recovery and survival!!!

Now my left optic nerve was damaged in the accident, so my left eye is completely blind. So I to am fearful of large groups. But I'm learning how to adapt. Stay by the wall. Stay close to an exit door if it makes you feel more confident. Oh, I forgot to write that loss of all self-confidence is a trait just about all of us survivors deal with.

I don't do stairs without a handrail. I like to hold onto the rail with my left hand. So if I come nose to nose with someone, I tell them that my left eye is blind and I like to hold onto the rail with my left hand so that my right eye can see the rest of the stairs and help me make sure I don't fall. You know what? Not a single person has gotten angry. They all tell me "you're doing well, let me get out of your way".

Yup, I'm a survivor and tend to ramble...my apologies.

Great post! We will be linking to this particularly great post on our site.
Keep up the great writing.

Thank you for this article. Maybe it will help educate someone and help them be more sensitive to this disability.

Mother of adult son 29 with TBI DUE to concussion football 8th grade to semi pro ball
2014 his life just froze he just stop all activities completely changed
From independent living on his on to no memory and confusion.
After getting loss one day .for a werk we found him .
By doing missing person
He was founf .but confused, scared .we didn't know what to do so our local hospital sent him retaliation center he was given med for schizophrenia sadly to as he was misdiagnosed.
We had him tested by a Nurologist doctor found out it was not. stop meds jan 2017 which caused him more issues thank God it was low dose of meds .As his mom i told the doctor something has happen to him . NOT Scko
he still has some issues .caused him not to trust doctors . Cognitive,
Emotions all of the TBI systom but since we were able to see a Neurologist tested him and we found out it was TBI we are being patient as
We rebuilding trust with my son allowing him time to ajust to his new situation our life as a family leaning to live with all the new day by day changed in him .
person but greatful hes a live and
willing to live at home with us mom and dad.
Thanks for all the
information its very helpful.

In your article, you mention that some prescription drugs have been shown to reduce apathy. I would like to know if you can elaborate on this. I am having trouble finding any reliable scholarship on drugs that reduce apathy.

Well, I think my anti-depressant is what got me moving away from apathy. I take 150mg of Venylfaxine every morning.

I do know that some of my apathy came from a comment my wife's daughter made, an RN, and further research has shown to be correct. Upon coming back to life from a severe TBI all my self confidence was gone. Its been 10 years now. I'm getting better year by year, but self confidence is something I'm still working to understand how to improve on.

But the anti-depressant was the key for my situation. Feeling good about getting up and getting going. Taking on tasks and getting them completed. Being out and around other people. Learning how to socialize again. That's where one returns to living after a TBI.

One also needs to be cognizant that who they were pre-TBI is not who they are now. So its a voyage of discovery learning who you are again. And as the danged Dr always says to me "It just takes time". Pfffttt!!!

I have a different approach to dealing with the emotional effects of my brain injury: I accept that I'm apathetic and that I don't care about anything or anyone anymore, but still I get up every morning and go to work and I hope that there will come a day when I will feel a passion for life again, far away from the surroundings I'm in and amongst people I care about, doing things that I love to do.

Likely is this to be "in the next life" considering Everything, but that's the long-term objective towards which I'm forcefully moving at "the speed of a snail", especially considering that and how one's life, reputation and finances also become ruined as an effect of brain injury and so one becomes stuck, also in horrible surroundings, because one has no means or opportunities left to move away from it and them, as well as no peace or means with which to heal.

I have a traumatic brain injury which caused me to become more alcoholic any suggestions?

I'm sure you are aware that consuming alcohol is one of the worst, most self destructive & dangerous things you can do to yourself when you have a TBI.
I don't know if you have a support system in your life of people who care? If not, there are meetings in your city & programs for people who have sustained TBI & these programs will all help you & also, connect you will other people who are going or have gone through the same, or very similar situations. All it takes is a phone call. There's obviously a reason that you are self medicating, dir pain, depression etc.. You will benefit from getting in contact with your local programs & resources. Talk with a counselor, a trusted friend or family member, just talk to someone. There's plenty of creative things you can do to make yourself feel better.
Best of wishes.

This Is a Very True Article. 10 1/2 years ago, I had a Right Temporal Lobectomy to cure Seizures of 23 years due to a childhood head injury. I had to return to work in a mere 6 months to Survive, and at that time I didn't mind because I had more energy than I had ever had because of no seizures. It took 5 years for the Bruise on my brain to heal, and I was one irritable human being. I looked fine, but my short term memory was Tremendously affected, and I was working inna manufacturing capacity. Had I not had confidence in myself, I would have been a disaster to those around me. If you lose friends because of your injury,, they weren't real friends to begin with. The friends that stuck by my side and the new ones who have accepted me since, have a Friend For Life.

The most frustrating part is you are consciously aware that you are not the same and there is nothing you can do to go back to who you were. I am 180° different than who I was and it is horrible. I was positive nothing bothered me now I am negative and everything is a huge ordeal.

Then you must get help...and by that I mean medications that helps keep your brain in a good mood. Yup, anti-depressant. I take 150mg a day of Venylfaxine. My Severe TBI was 10 years ago, May 2008. In Oct 2013 anger issues got the best of me. I did my 72 hour mental health hold at the local hospital...best thing that's happened to me!!

The Venylfaxine makes me feel very good about life. I can get past the being 180 degrees different. I look at it as "who I was pre-TBI died that day. Today I'm on a journey of discovery to learn who I am now" Some things I can no longer do, But I get to celebrate all the things I can do.

Rewiring the brain takes a lot of time. I've read more on the web, had more discussions with my Neurologist and Psychiatrist as time passes. And I can look back each year and see that I'm doing better.

Hate to admit it, but I would recommend you see your Dr and ask for a 72 hour Mental Health hold at a local hospital. Believe me, you will feel better, you'll get a chance to work with Physicians that understand what you're going through. know a whole lot more about medications for your issues than your PCP.

You will be given a transition plan that will include participating in groups like anger management, adjusting to life with an injured brain, but it sure worked for me.

You can do it. You just have to make your motto, "I am not a quitter" and I will survive!!!

Same for me.

I had 2 strokes in March 2016 at 29yrs old. At that time I had many close friends. A handful of which I had been friends with since grade school and many more that I had been friends with since 10th 11th grade. Now 2 years later I have only one friend that even bothers to pick up the phone and call me and very few others that even keep in contact. I think a lot of that has to do with getting older people starting families me being the only single one without children has a lot to do with that but I believe you even more so the fact that it's because they don't understand where do they care to understand what actually happened to me. I have been told hundreds of times to try to be more positive, I should try harder, go to the gym more, stop taking soo much medicene. Asked why am I so irritable and crabby? Do I know how lucky I am to be alive? Why don't I find a hobby? Why don't I go out and meet a guy?
As much as it hurts and breaks my heart that Ive lost so many important people In my life I don't miss those questions.

Losing friend post-TBI is very normal for just about all of us Survivors. I lost everyone I biked with...some 20 friends. I retired 3 years post-TBI and have lost just about everyone I worked with. So be it. I like to think that is their choice.

So I work to make new friends. Something I have virtually no skills at. I was an army brat until I was 12. Dad retired and we settled down in one place. But during the first 12 years of my life we moved every year, two years, at most 3 years. And when you moved, you never, ever saw any of your friends again. So you didn't work hard to stay in touch, you just started over. But settling down in one place, starting 7th grade...and all these people grew up together. Had been friends forever. So I was still a loner. But 10 years post Severe TBI. I take my medications, especially the anti-convulsive and the Venylfaxine anti-depressant.

For the first time in my life, I'll strike up a conversation with anyone, anywhere and on just about any crazy topic that I see around me.

Remember, you struggle with mental fatigue as your brain is injured and it now takes more pieces of the brain to solve things. Be more positive...do that through "modern chemistry". ie. Medications. Do not be afraid to take what has been prescribed. Do not be afraid to investigate every med and see what it has for side effects and how it interacts with other meds. And then take them as the Dr says...talk with the Dr often so you have time to prepare for medication questions.

Yes, you must find things to do with your time. Keeping the brain active and learning new things is what keeps dementia away from your brain. That is oh so important!!

Go to the local Barnes & Noble book store and look through the magazines. Doesn't hurt one bit to buy a few that have articles that seem to interest you. But keep going back until you find something that "trips your trigger".

Way back when I got out of Engineering School in 1976 and went to work for an Electric Utility...I attended my first retirement meeting. I learned there were four types of Retiree.

The Leisure Retiree - a few holes of golf and a few hours in the bar. Then call it a day.

The Struggler Retiree - did some good financial planning for retirement, but doesn't have a clue what to do with themselves.

The Lost Retiree - didn't do any financial planning, trying to retire on Social Security and has no idea what to do with themselves.

And the Reinventor Retiree - that's me. Did good financial planning and did put a lot of effort into planning for what I was going to do in retirement. Seven years retired now an have lots of things to do. I built a big shop building I can do about anything you can think of with metal, weld, bend, CNC cut, roll...you name it...I can do it.

I also got into the Side-by-Side off roading lifestyle. So 5th wheel trailer, truck to pull it. And have some grand times out there. Not really that expensive...but I like it!!

Meet a guy? Well go to the websites like e-harmony. Be very upfront about what has happened in your life and I'm sure there will be replies that are good and some that are bad.

But don't be a quitter...stay out there doing you're best and life will be good!!!

I have suffered two brain injuries. The first in the oilfield in 1992 and a second reinjury in Afghanistan in 2010. Many things change after an injury. Friends come and go as in life. People don't understand but even trained professionals have to listen to you to comprehend things you are experiencing and from my own experience even then they don't actually understand. Most importantly,at least in my case, it seemed to be most important for me to understand who I am. Today, tomorrow, and future. I seem to have a few problems from my injury and people do not seem to notice but that's okay. I have personality change but it's for the better. I work on short term memory every single day. I function,at least as far as anyone can tell. Even the professionals. Do not be discouraged when they don't understand. That was the hardest thing for me to come to terms with. The professionals can be idiots too!

Bridget,
Friends can be a loose term nowadays.  I used to have a lot myself. Now, no. Partially my fault. TBI has pretty much made me a loner. It's ok. I don't mind, much. But, ya, friends get married, kids, jobs, and don't have idle time. And even though it may look like they have it together; chances are they don't but mask it well and don't even have time for themselves.  If you have 1 good friend; feel fortunate. Even 1 is hard to find. Make sure if you reach out to someone or hear those question; steer them to this site. Maybe they will understand. There are support groups for people like us, Idk if you ever went to one. Where I'm from they call it BIA. Brain Injury Assoc. Might want to look into it.  It is good to share with those who know what you are going through and understand, Friends can be there as well.

I found this article this morning. I thought it was helpful and thought you might too.

My husband is a TBI since 2010. I've taken care of him at home with a lot of help. He has come a long way in his recovery. He too had multiple strokes 3 weeks into his accident. Since this time the trach has been removed, I had to reteach him how to breath, how to hold his head up by strengthening his neck. He has had to relearn a lot of things like brush his teeth, comb his hair, put a shirt on. All with assistance. He has a G-tube, he can't swallow and has a suction machine by him all the time. I make all his foods, which is another reason he is on NO medications. He does OT/PT 4 days a week at home. Right side mobile and the wheelchair is a blessing. He only gets one day in bed a week. We keep him moving so he doesn't get blood clots.

I have worked very hard to stay positive and help in his memory loss. I have visited a therapist and this helps to keep me going.

My husband can be any age on a daily bases. He also doesn't remember losing his mom. He wants to see her all the time and denial sets in when I say she has gone to heaven to be with God. Not sure how to handle this one? Any help from TBI persons would be great.

Family doesn't know how to act with him, so they don't visit. We have 4 adult children 1 is full time on his care, another visits as often as he can. The other two can't deal with it. Our grandchildren are troopers, they have no problem with his condition.

God gave my husband back to me and I'm so grateful for that. I love him and will never give up. God is with us and helps with everything. We just ask.

So for all those loved ones out there dealing with a person that they love with TBI, I say be patient, be kind, take a breath, walk away when you are frustrated before saying anything damaging. I do this all the time. Compassion is the key.

Your story sounds a lot like mine! It’s comforting to know I am not alone. My husband 6 months ago went into cardiac arrest and suffered two strokes. It’s super hard I commend you because I try to stay strong guys it’s so hard. He has 6 brothers and two sisters and a mom no one wants to bother the hard thing is he can’t accept it

HI,

I was engaged to a young man( he was 34 and i was 28) in the early 1980's who suffered permanent brain damage as result of a bad auto accident. Although he resided here his parents who were quite on in years took him back to Florida to live with them and his fraternal twin. They are all deceased. I lost contact with him as his family thought I should go with my life but I found him recently . He is in a retirement home and I spoke to him briefly. I want to go visit him but do not know if that would be worst for him. The staff said they knew of me as said he spoke of me all time and knew my name. He was a wonderful, intelligent, loving man and his accident altered his life , mine and that of so many others. I am sending cards, letters, almost daily as he no longer has any family, never gets mail or visitors ., He does have a guardian. What can i do for him? It must be awful. I want to be a friend of sorts as everyone needs to know they are cared about, remembered on their birthday! make him smile, laugh, be happy. I always hold a special place in my heart for. him. He referred to me as woman of his dreams. I regret we were not married as I know there are frustrating days but I loved him so much and visited him daily in hospital and rehabs for 2 years! Then they chose to move him back to their home down South ( I understood that). What can I do for him? Should I take a trip down to visit? I know what we had can never be as he is the same yet different. I just want to be his friend, let him know he is cared about., never forgotten. Thanks!

I am so sorry that he was moved away, even if it made sense for the family. It sounds like he loves you so much and you him. I don't know the extent of his condition, and these visits can end up being difficult emotionally, not just because the sorrow of what was lost, but because of his confusion. That said, I think you should still go if you think you can handle it. After that initial visit you will be able to know how live interactions with him will be. TBI can be the most lonely thing in the world. Sending letters, little gifts like his favorite snacks or books, if he is able. . . maybe virtual games such as Words With Friends. Anything you feel good doing, that lets him know that he is remembered and connected in this world, is an amazing gift and will help him greatly. You are an amazing women for staying connected with him. I know it can be so much easier to turn away. Sending you love and strength.

I have a brain injury, go see him. Stop being so afraid. You can change his life.

You are an angel. Stay in contact and keep being his friend, no matter what. After a lifetime with TBI, lonely is my worst condition! I am surrounded by my large family, yet no one in my circle really understands what it’s like to be PTBI! If you can, make the trip! May God bless you for your loyalty .

Susie,
Your husband is very lucky to have you. Sure your faith in God is the backbone of who you are. I have TBI as well. Told possible CTE. Stage three. My wife too is a Christain. She is a blessing.  I can not relate to what your husband is going thru.  I have had multiple concussions due to sports. It has taken its time to catch up, but it has. This I do know. My wife's mother lives with us. She is 93.  Her husband also lived with us but passed three years ago or so. Alzheimer's. Wife's mother has dementia.  Pardon my spelling. My spelling used to be really, really good. Now; not so much. Mom still asks where her husband is. We keep her husband's obituary on the table by where she sits.  We tell her and give it to her to read. Don't know any other way to do it. I hope your husband gets better. There is not much worse than remembering what you used to be able to do, and now, not. There are support groups for caregivers. In CT they have them through the Brain Injury Assoc.  It is good to talk to those going what you are. I think for you, it's an opportunity to share your faith.  Someone out there may need you besides your husband, God bless you.

13 years ago today at 16:32 hrs (New Year's Eve), I died for "38 minutes to an hour" according to CARE Ambulance. My head hit the ground so hard, the lights just went out. I was moving a dirtbike in between shots in back of my studio when I got hit by a truck...no helmet since I was just moving it over to the dirt and I grew up racing motorcycles.

I've always been blessed with the ability to use both hemispheres (I'm an engineer/inventor and photographer), and my recovery has been truly remarkable. However, it's BECAUSE I appear fully functional again that my close friends/family lose patience with my short-term memory...I'm told that I repeat myself constantly.

I've sent them this page's link...so, thank you.

BTW, if anyone wants to know what it's like on "the other side", I remember EVERYTHING, and I've talked about it on the radio a few times. Four weeks ago, I spoke with Bill Ross on his show called "Life Outside the Box". I come on at 26 mins, so fast-forward after he introduces me in the opener...enjoy: https://soundcloud.com/life-outside-the-box/lotb-12-02-17

My guy just got a TBI. Nurse said he hit his head and it appears multiple times causing his entire brain to bruise. He gets the hummingbird out today and maybe tubes out tomorrow. Tomorrow be 2 weeks since the initial accident anyhow he was trying to sit up but couldn't cus his hands were strapped to side rails and he was crossing his leg. They say he will never care for his self but I seen that and I'm more hopeful. He does not know me or his dad how long does that go on for? His memory will be hard to get cus for 6yrs he would remind me of stuff we have done. Dr.s I have seen, places we have went. I don't have TBI but he has always had enough memory for us both. How much does TBI people change. He was amazing, patient, kind and loved me like no one ever has. He has told me for 6 yes I'm the one he meant to marry and I'm beautiful no matter if I looked like hell. I'm just worried I will be pushed away by him and his dad He brang me 1300 miles from home to NM. I'm still only here cus his dad said he brang you here and wants you here. How much is gonna change?

Hi Ed, that was an amazing story! It really goes along with what I believe. I formed my ideas from reading books such as Richard Bach's "The Bridge Across Forever" and "One" and reading "The Education of Oversoul 7" trilogy by Jane Roberts. It resonates perfectly with these, especially the Richard Bach.

I was very disappointed the golf lady derailed the subject and continued to do so even after the host mentioned the subject had turned off topic.

However, I am glad that you mentioned the book by Dr. Eben Alexander and will order it soon. Have you written a book? I would love to hear more.

Hi. I've been married 11 years. My wife has had a series of brain injuries ongoing. I was working and became disabled. We communicate like D-Day sometimes. Its like the art of connection to someone with TBI is unique and method is not interchangable. With insufficient tools, a plier being the last tool- it strips a hexnut... and that is not the end. You can go for the hexnut, stop, cry, ache... there is no hexnut! But aggressivity and defenses build around what seems insurmountable to accept! One day is here- today.

I am willing to face the fire of the desparation but not today. Now I get Xmas cookies. I can use conversation and encouragement. I'm still getting my @$$ kicked by life trials.

I have a bf and he had a brain damage. He is always negative, blaming or accusing me all the time even I am not doing something. Like he got very jealous over nothing esp we are in a long distance relationship. He always think that I am talking to someone else even I am not. Sometimes he act like a child or immature. It is very hard to deal with him.

Belittling. Yes. I don't have a living relative who hasn't treated me as though I were a case of 'bad character' instead of pediatric TBI. And I know perfectly well that none of these useless people could have begun to stand up to what I've stood up to.

I noticed you commented recently. Thank you for that. My wife has TBI and I watched, aghast, as they most all would give her a bad time in front of me. Yelling and arguing. Then her parents each passed away. We both would argue over no big matters and that has lessened with acceptance of what cannot be SEEN... which is faith & love. I wish she said what you did about feelings. She cannot. You help me so ... Thank you

Just be happy you’re alive..

It explicitly says in the article not to say this.

Is there anyone really here, experiencing what it's like to be the mother of a 45 year old who sustained a TBI at age 15? I can't take another day! His behavior is so oppositional.

My 54 year-old son was 16 at the time of his accident, comatose for three months, shunt in brain, seizures, inappropriate behavior, anger outbursts; but the most loveable, sympathetic, empathetic human being with a wit and joy that puts me on the floor laughing.

Seizure medications can cause agression and anger, especially Keppra and Valproic Acid (Depakote). There are better drugs. If your physician is not helping, find another; even if it takes 20 years. Medications have to be selected with physical and mental disabilities in mind. Head injuries can cause intermittant brain swelling called encephalophy. Study the medications your son is on: all have side effects. Observe influences on your son’s behavior including posture, environment, food additives, diet, sleep patterns: they all give clues to help medical personnel.

AND get and keep ALL medical records, FOREVER..Hospitals and physicians do not have to keep them. State law will tell you how long. Keep results of tests, MRIs, etc.

There are many government funded services to help people like your son and your family. Begin with one: ask questions and seek help. You will open doors that I am just now discovering 38 years later...including this blog.

I wish I could fully identify with your pain and frustration. The things that no one else sees you go through are the ones hardest to handle. It has to be very difficult to have been a caregiver for so long. You hold so much hope for your childeren’s futures. I do understand the oppositional behavior. My husband sustained a significant brain injury in a tractor trailer accident last year. His behavior is so out of control when we go places that at times I just have to bring him home. He knows enough to know he doesn’t want to go to therapies or doctors visits but not enough to understand how injured he really is. He fights me at every turn and blames me for making him do things he doesn’t want to do. His short term memory is basically gone so after going though one of his temper tantrums he forgets why he has to go to therapy and we repeat the scenario again. So, no I don’t know how it feels to be in your shoes but you have my empathy and as much understanding as I can give you. God bless.

Hang in there, I'm just going to pick my 38 yr old son up tomorrow with severe TBI from motorcycle wreck,I'm on overload.So many emotions & dealing with so many other things.One day at a time is all I can say at this point.

I feel your pain. My grandson has TBI. Happened in 2014. He also had multiple strokes in brain after the extensive surgeries. He is stable now. He has a thrach and a feeding tube. He doesn’t talk or able to move past the neck down. He will be 22 this January 9th. We love him so very much and we keep praying for him. He does smile a lot and seems to know what we say and he recognizes those close to him. We encourage him all the time and look forward to his beautiful smiles. So very thankful to GOD that he is still with us.

Good Luck to you, make sure to take some time for you.

Guys, I need help, I don't know where or to who I should go for help. I got my first brain injury when I was 7 (I'm 18 now), I found out about it about 2 days ago. Basically, after my swimming lesson, I went into the showers with all the other kids and we decided to spray shampoo all over the place, being the little hyperactive kid that I am I put my feet on the wall and with all my might I push and slam with the middle of my head to the wall. I was unconscious for about 45 min - 1h and after was extremely dizzy and confused and didn't remember what happened for about 3 days. I didn't receive any medical attention, just my parents telling me to lay in bed and sleep it off. After the first one, I also had multiple falls off staircases in my school, hitting my head on walls, falling and also without knowing about the brain injury I thought it was all my fault and I'm just a bad person and what everyone says about me is right. I also have been drinking alcohol since I was about 16 (started after finishing 9th grade). Have a lot of paranoia, anxiety, depression, phobias, extreme social awkwardness, problems communicating with other people, problems maintaining any type of relationship, my vision is slightly blurry and I can see static everywhere I look, my ability to speak has also been getting worse, putting out words and telling a story is like a math test, I can't explain anything and usually when I start a story I end it in 1 minute because no one understands and I forget what I wanted to say next and I'm tired of living this life, I tried ending it all 3 days ago but a blackout from alcohol stopped me (I live in Tallinn, Estonia)

Please please please consider immediate medical attention and a Neurologist should evaluate you at the least.

Aleks, stay strong! Get some psyc help first and foremost. The first thing is to feel good about yourself. Go to hospital and tell them what you did three days ago trying to take your life. They will help you get on some meds and help with counseling. I am a Tbi survivor, also from age 7. I am 37 now. I have had many of the same experiences as you during my lifetime. Realize that you can and will be successful in this world! You are worth fighting for! You are strong or you would not have made it this far! Think of things that make you happy! I revert to my childhood happy days when I feel down. Close your eyes and put yourself there for a little bit. You will begin to feel the same joy you felt then I bet. I wish I could help more.

Hello. My son has suffered two major brain bleeds due to moyamoya brought on from cancer treatments from age 4 through 15. He is now 27 and recovering from the last bleed in May. He is a great young man but is extremely board. He has no day to day short term memory so returning to school or receiving training for a job seems unlikely at this time. I'm note sure where to ask or go to try and help him return to some type of life. He cannot drive anymore and socially really only has one friend left who visits and takes him out maybe once a month. I looking for help to help him what can I do?

Perhaps there is a group in the area that helps people with disabilities have a social life and /or maybe a church group or volunteer group may offer some respite care and socialization opportunities. I don't know where you reside, but you can look up places, there are advocacy groups and support through the DSPD, dept. of persons with disabilites and other groups for brain injury, etc. Though, not the same thing, I have a son with neurological challenges. He has static encephalopathy. His brain is not developing. He is 17 years old, and has the mentality of a toddler. He does not talk, does not write, nor read. He is highly energetic. There's a group in my area called Antanna's Vocational Services. They have socialization, residential, and vocational services for those with disabilitities. We have a support coordinator who works for Aspen Grove Advocacy in our area. My son and my other son (both also have autism, one is high functioning), go to there day programs. I hope you can find something in your area. a support coordinator/advocate can help you find what you need, regardless if they work for the government or are independent (which mine is)

I am from Iran.I had a very severe TBI 1.5 years ago. I was in coma for 4 months then I opened my eyes but I do not remember at all. At first I used wheelchair. Then I walked some steps. I did some exercises but I feel exhausted. I keep doing these exercises but I am very tired and fatigue. Here there is not a good knowledge about TBI.

Pages