Adult Life after a Traumatic Brain Injury

@laura1961 Bless you for taking care of your mom. I know that is difficult and tiring. My dad did pass a few years back.

Are your seizures under control with medication? I have heard that there are new medications now that are more effective.

FINALLY! People like myself!
Hello!
I have suffered a very serious TBI about 4 years ago (wow, has it really been that long!?) I was injured by a few men while living at my worst possible way of living. So I blame myself for being in that awful environment and blame myself for being so young on these streets thinking no one would hurt me! Fast forward to now it doesn’t matter why, how, or any of that…I still got this dang TBI tho…and had to return the the town where everyone remembered the old Emma, and she’s sadly gone from this injury. I finally tonight googled TBI and found this written by you guys. And as much bad stuff as I read…it placed this huge smile on my face. Because there’s no one that understands how I didn’t mean to but have some how changed completely into a different person only you guys seem to know anymore. I used to LOVEEEE 24/7 being around people, friends,anyone! Now I sit at home, mostly in my room alone. I suffer from anger that is just from no where and will scream at anyone “ STOP BREATHING SO LOUD!” Knowing damn well they can’t help it. And as for memory…that it’s almost most annoying because the doctors give me these memory tests that I pass but that’s not the type of memory I have problems with. If someone says do you remember so-and-so and I was just with that person yesterday…doesn’t matter..I still can’t tell you who that is because names don’t ring a bell in my head unless I say that name like every day a bunch of times type of interaction i mostly can’t tell you who that person is by the name you are giving me. That’s super annoying.
So here I am back at “ home” and that’s why I stay in my room..I was one of those loved people that everyone likes to be around and I don’t want to change that, which lets be real..it would…with my TBI, your TBI. WITH TBI! Only a very few people can deal with me anymore..and I know they don’t understand me, but they still love and deal with me so I’m crazy thankful. But to finally read entries written by people who are just like me, that has brought a genuine joy to me. A feeling that I don’t feel for myself too very often anymore so thank you!

My emotional filters were stripped after my moderate TBI 31 years ago (took a few years to rewire my left temporal and basal frontal lobes). I withdrew from people because I was vulnerable. I wasn't in a relationship, but a few bullies and clueless people at work would joke about me being brain damaged, or called me "drame bamaged" and "brain dead". Each time I felt like I was gut punched. It stopped after a year when I told the bully I was going to contact HR. I was able to get caught up on work and finished my PhD during that year (so I wasn't much fun to be around anyway). Amazing what we can accomplish even when we are a few neurons short of a full deck.

@jenniferhunter I have struggled for 20 years after a TBI which left me with seizures. They were started after multiple blows to the head by my x partner. It is a difficult time after this terrible tragedy just like your father, things change & are never the same again. You are so good to be looking after your father. I was looking after my mother up until 2022 as she had been left in pain 24/7 after her gallbladder was removed. She had a stroke in 22 so had to go into a home as she ended up in a wheelchair & is now struggling with Dementia.

I had a TBI and 8 hour brain surgery. Now I have memory problems, vision impaired and epilepsy. I can't see anything well enough to do anything fast. I have no depth perception. I carry my address and phone # in my purse because I can't remember it all. My family is all dead from cancer and my friends all moved out of this expensive shit-hole. When I applied for disability they denied me!! This is in Vancouver, Canada. I wrote them a scathing letter back explaining why I can't work. I had a good job. I wouldn't quit so I could lie around and do nothing! I am 57 years old today. They Federal government gives me $1200/month which pays my rent and the Provincial government gives me $300/month to buy food, cleaning products, pay bills and take the bus. It doesn't add up. I was homeless before but now I share an apt with a room-mate I hate. I live off my credit card until I can't make that bill payment. I just want to say to the Feds, Pierre Trudeau and the BC provincial government FK U! I hope you get old, lie around in dirty diapers and have bed sores. If you can't pay the enormous taxes that we pay here, the government literally wants you dead.

Hi Dawn l had a Bri in 1997 and your a nurse so you know about viral encephalitis. I had and still have a little memory issues. When l first got out the hospital l didn't know my house or children so l had to relearn everything. My children were young and l was working 2 jobs. I didn't have to but l worked at the hospital and they were just like a part of my family. I worked also at the secretary of state office. And l thought you couldn't terminate someone with a disability. I worked so hard with my speech therapist to relearn things l should have learned with a occupational therapist but l did still have problems with my speech. When l went back to work l could feel they were going to get rid of me and they did just that. My supervisor at that time told me her husband got disability and l could get the same. That was an insult to me because l have worked ever since l was 13. Well l had the same issues with anger and l was depressed. My husband and l had moved to a new house with five children and from having three incomes to one was alarming to me. Oh and l brought a new car. I didn't know if we would eat, lose the house and car and maybe the children taken away because we weren't going to be able to support them. But until this day l still am thanking God because even though we had a storm in our lives we didn't lose anything. So l did beat my daughter and accused her of getting pregnant. But that was because l wasn't taking my meds but she did become pregnant twice with different guys and she would always lie and steal. My oldest son was going to college for awhile and his girlfriend now wife kept him from that. And he left our house to move in with her family. Then my middle son after he graduated from high school didn't tell us he signed up for the military and when he graduated they were there to pick him up for boot camp. My youngest son also went enlisted and we knew he was going to do that but he got married to his girlfriend now wife before he left. And her mother and stepfather took them to the justice of piece and we didn't even know it. My husband and l was going to real estate school and my middle son's supervisor was telling us about it but didn't know it was my son but God let me know it was him. My youngest daughter after she graduated from college she told us she was closing on her condo and living with her boyfriend which is now her husband. So the doctor thought l was so depressed after the Bri that l was put on antidepressants for years. I always would watch wheel of fortune to help me with some of my memory and l was driving. I went to college and received my diploma as a occupational therapist assistant in 2011. I kept falling because of my mobility and my eyesight was getting a little bad. When l was doing my clinicians l thought l wouldn't be able to do it because of my memory and it wasn't easy but you know God was with me. I had to write down notes to remember and when l would write them l wouldn't be able to remember where l put them. So now l have an app and l put my meds in it to remind me when to take it. I journal things l hear doctors say and also what l am suppose to do for the day. My doctors appointments and how l feel for the day. Also my weight, blood pressure, headaches and so forth. Which l find out everyone forgets at some point. If they say they don't well that was a good lie for the day. So in 2014 l went on a women's convention with the church. My daughter had my granddaughter while l was away. When l came home she brought the baby over and l was holding her and thank God l gave her back when l did. I fell back and that's all l remember. My family told me they thought l overdosed on my antidepressants because l had 3 different strenght in my pill box. I knew that wasn't true. I just kept my pills in my pill box because my psychiatrist kept changing it up and down because l couldn't sleep sometimes. So they gave me so many meds that l became allergic too and l was only allergic to codeine. Now l am allergic to so many drugs they are scared to give me anything. So they took me off the antidepressant and now l don't take any. Then l had elevated ammonia. And before I never had anything wrong with my liver. I use to get my liver checked while taking the antidepressant. So l was put in icu and this had been my 2nd time since my Bri. I wasn't doing so good and they didn't know what to do with me. So they wanted to send me to a nursing home but the Lord instantly blessed me to get out of what was happening. I went to rehab to help with walking, memory, occupational therapy and speech therapy. I did very well. This was the 3rd time l was in inpatient rehab and so many times in outpatient because of balance issues. So l prayed to God about restoring my memory and now l am able to remember more things. Plus l had so many diagnoses in 2014 l didn't know what was going on. I do have extra veins in my liver because of medications and seizures that l was told l had from my first neurologist who l trust. I really think it might have been allergic reactions or l was completely healed from them. I like the second one better. And then l was told l have depression, anxiety and conversion disorder but if a person really know what a person goes through with a Bri then they would think twice. Sometimes doctors are quick to diagnoses instead of trying to find the answer and we are quick to give meds also. And we categorize everyone the same. So now they are starting to see the misdiagnosed l had to endure but we all learn from our mistakes. And you just can't be hard on yourself. I learned in school that we have scales where everyone one should be. I ggmj1btdfkmjy your one year old you should be walking and saying 4 words or so. Well that's not true we all learn differently. When l walked l was over one because my father would always pick me up not because l was not on the scale. If my patients didn't go to college or was on drugs don't mean l am going that way. They thought l had dementia because it's in my family line but l knew thatvwasnt so. And l wasn't going to except that. The doctors know l won't accept everything they say because they don't know everything. And you can get all or most of your memory back. And if you really want to be honest everyone has something wrong with them we are not perfect. So each day try something new it might take a week or a month or forever how long just don't give up and don't let anybody say you can't. Good luck.

Dawn, I am 73 yr old woman. II listened to your pod cast and have experienced similar difficulties after a car accident in 2015. My life too, has not been the same since the accident where I had two brain bleeds most likely made worse by my taking a blood thinner after having an MI and stent placement five months before.
It took a long time to recover because I also broke my neck, six ribs and had compression fractures down my spine.
At first I had anxiety attacks daily which soon became PTSD. Being immobile in a turtle shell cast with a neck brace made my emotional reactivity worse. I had neurologists do cognitive testing and my Master's Degree in Counseling Psychology where I had led a busy professional life was not so evident. I still have trouble with complex life tasks like filling out forms, figuring out the steps to take to finish a task and I refuse to read through insurance or tax documents because it is just overwhelming and I am likely to cry.
Loud noise, a room full of talking people and bright lights give me trouble and I am likely to get dizzy and light headed. Stage plays overwhelm and events like weddings, funerals are so hard to attend and I am exhausted after.
Seeing a car accident sends me into a high anxiety state and I am likely to cry uncontrollably. Sometimes something is mentioned that sends me into a flashback state of sobbing and shaking. Nights can be full of waking up with high anxiety.
Riding in a car is nerve wracking because I over react to situations. I get car sick now and am dizzy when driving or riding.
When going for a walk I sometimes lurch to the right or feel like I have a bobble head.
I have to write everything down or I forget. You know the routine. Yesterday, I left my purse in a shopping cart. Luckily for me an honest gentleman turned it in.
There is more but that is enough for now but I need to tell you my coping skills.
I walk daily and use a stationary bike daily. I listen to soft music and do visualization of happy, healthy, holy. Grateful, gracious and grounded.
I sing in a chorus, play the piano and flute and read. I could not finish a book at first but now I am able. I follow athletic events. Go to church and sing in the choir and have taken up water color painting. I get exhausted easily and must rest often.
Lakelifelady

@kayabbott Hi Kay how is your Recovery gong? I have struggled with a TBI for 20 years after numerous blows to the head after a DV assault.

Kelly, Thanks so much for sharing! I find all of our situations are similar and different all at the same time. I'm glad you shared what's worked for you. I think we can teach each other so much while giving a voice to this recovery process. I'm very eager to learn more about the CBT that has helped you so much. I will be checking into it. I full heartedly agree with your last sentence. Yes! There is hope!

Hi @dawnpereda, I have a brain injury also, and it's taken me years to come to terms with what happened to me and how to negotiate life when I'm not "me" anymore. Even worse is that I learned that I never even needed the brain surgery that caused the injury (basically, my home medical center misdiagnosed me and led me to having the surgery -- which I never, ever needed). Thankfully, the doctors at Mayo that tested me to figure out exactly what brain issues I have also took ample time afterward to ensure that I was okay and helped me figure out my path forward.

My symptoms: incredibly irritable for no reason, horrible memory, horrible attention issues, very easily overwhelmed, unable to prioritize (down to the level of not being able to organize my thoughts), inability to find the correct words to say (always on the tip of my tongue), transposing numbers in writing and in speech, inability to decode information (for example, while watching Jeopardy, I know that I know the answer and that the information is in my brain, and I know if a contestant answering is correct or incorrect, but I cannot retrieve and say the answer)... a definite change in who I was prior to April 20, 2009 (<-- the date of my surgery).

My injury is primarily in my right frontal lobe, so Mayo figured out that my executive functioning is impaired, which explains all of my issues. (Interestingly, it's not that my memory is bad, but my attention is compromised so much that things never get into my memory.)

I know that I will never be the same, but it can get better. Here's what I've done...

I see a psychologist who deals with medical stuff regularly. We talk about what happened, and I am slowly learning to forgive my doctors and learn to adjust to my new brain.

I also work with a neuropsychologist on something called Cognitive Behavioral Therapy (CBT). He is teaching me how to use other parts of my brain to take over the functions lost by the injured part of my brain.

For example, as of last June, I was unable to remember a simple, three-item grocery list five minutes after I had tried to remember it. Then I'd write the items on a sticky note and attach it to my wallet, and I'd even forget that I had the list with me at the store. But now, by using strategies my doctor taught me, I can remember 80% of a grocery list 30 days later.

He's also taught me simple tricks to help focus oxygen to my frontal lobes to help my thinking, refocus negative thoughts elsewhere, control and slow down emotions, etc. I no longer bite my family's heads off for no reason. I don't get as easily stressed out. I can now actually learn new things again. I kid you not... this stuff works!

I suggest finding a neuropsychologist who works with patients on CBT. It has helped me significantly, and honestly, I wish that they'd teach people those tricks starting in late childhood. I feel that the things I'm learning would benefit most people and help us all be able to manage our lives as a whole.

There is hope!