Adult Life after a Traumatic Brain Injury

TBIs take a long time to recover. My moderate TBI was 30 years ago, and it took about 2 years to get to 70% and 8-10 years for "full" recovery. It was several years to tamp down my mood swings (basal frontal lobe) from injury and life; I don't know if therapy is an option for tools to herd emotions. I keep lists because I don't remember numbers and peoples' names (left temporal lobe, aphasia). It helped me that I gave myself permission to fail (I was writing my PhD disseration at the time). Recovery takes a lot of energy, but rewiring is helped by the usual: get enough sleep, de stress, avoid mean people (TBIs bring out the worst in others), learn new things, do word/number games, spend time with yourself and friends, and remember that you are still you.

Welcome to this group and to the recovery process. As a 2 year old survivor, you have many new wonderful years still to come. My injury happened 20+ years ago, the first year was ugly because of short term memory, aphasia, emotions... you name it, I had those problems. In-person speech & occupational therapy sessions werr really important, but it was family, friends, co-workers who helped me more. Yes, even co-workers. I didn't lose my job but because of aphasia and memory issues my job wasn't actually the same. but close enough. Part of my pre-injury job was teaching computer software for staff in the library I worked at, but couldn't handle 12-20 "students", but could teach one to one instead. During year 2, I was able to work full-time again, and thinking I'm getting better. A big thing that helped, and still helping, is being my own advocate. Which meant telling other people about not just my traumatic brain injury but, since brain injuries are often called the silent injury, talking about other survivors as well. I can't tell you how many times, after a aphasia or short-term memory issue, I heard somebody say "that happens to me all time too" or call it a "senior moment". Bull crap, it's not about that. To continue to recover from aphasia: I play my favorite music records (or CD's) all the time, especially in the car, and sing the lyrics with the band; talk back to reporters when listening/watching news channels on the radio or television. For short-term memory? New hobbies: I bought a mandolin to learn a play an instrument; started growing vegetable gardens; found plans and made a pinhole camera for film photography.

In my humble opinion, don't focus on your losses, focus instead on what you haven't lost. Let your long-term (working/muscle) memory guide you for recovery. Find something you never did before, but have thought about doing before. And above all, don't let your injury define you. Believe in yourself.

My TBI occurred 18 years ago. . I was one-year post surgery, in my left temporal lobe, to remove areas in which I had uncontrollable seizures. Just that time of year, and a little bad luck I guess. I slipped on the ice in a parking lot and caused a little bleeding inside my left temporal lobe... I was lucky: I had extra area for the blood and swelling (I was watched when I got to the E.R. though).

My TBI unfortunately intensified the effects of my brain surgery, both physical and emotional. At that time, I was a stay-at-home mom to two little girls (aged 2-3 and 5). I tried hard to be a good mom, but I struggled every day. The major depression that had developed post-surgery quickly became severe. My husband wasn't understanding or sympathetic (at all) with my physical changes. To him: I looked fine & was therefore blowing everything completely out of proportion. Our marriage quickly fell apart, despite efforts in therapy. The end of my marriage devastated me, and I knew that I certainly couldn't provide for our daughters, so I moved out.

I have struggled with major depression since, and work a lot with psychologist and psychiatrist. I also have a helper to assist me with processing regular paperwork, as well as maintaining my finances.

My memory was strongly challenged prior to my TBI, but I do have a tougher time finding the right word(s) a lot. Especially when I am feeling under pressure or emotional. In those moments, forget it.. and I move onto a different thing. Moving on has become easier for me, as several years passed, and I realized that the harder I try to recall, then I lose the entire subject that I was thinking about. And that is REALLY frustrating! Cest la vie!

I hope that I've answered your original question.. Best wishes to everyone!

@heathertink1970 I wanted to share a bit with you because my dad had a traumatic brain injury from a skull fracture in his 60's. It was a few months before I could recognize his personality. He was just someone else, and after the hospital discharge, I took care of him feeding him through a GI tube because he lost the ability to swallow correctly, and helping him relearn language that got messed up. He would invent words by throwing 2 words together, think it was real and argue when I corrected it.

In later years, he became very emotional and would cry easily even about things that happened to someone else like tragic news stories on television. At the same time, he was kind of drawn to it and watched the news all the time. He was still angry about bullies in high school and a toddler who rode her bike into his path as he rode his bike down the street. At that time, he had had a stroke that took away half of his vision so he saw only to the left half, and she came into his field of vision suddenly from the blind side, and he hit the brakes, flew off the bike and broke his collar bone and fortunately was wearing a bike helmet.

After his initial recovery from the skull fracture injury in his 60's, he was able to return to teaching a swim class he was running for adults with disabilities at the YMCA. I volunteered and helped in those classes for both adults and children, and I worked with people with head injuries. In general, they could easily become frustrated and short tempered, and I saw that in my dad too. He had a short temper even before his head injury, and it got worse and he lost the ability to problem solve and reason well, but didn't realize it. He always felt sorry for himself and couldn't allow himself to be happy because something would set him off. Sure there were times of contentment, but with advancing age and him worrying about leaving my mom alone when he was gone, he wasn't very happy.

When I read your words, I hear hope because you recognize what the challenges are and are trying to overcome them and doing a good job with it. I am glad you have some help with things. My dad never did recognize his limitations. I think you have the ability to inspire others with your words and honesty, so I would encourage you to keep on writing and sharing.

Blessings,
Jennifer

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!

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!

@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.

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

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.

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.