Adult Life after a Traumatic Brain Injury

Hello, @oceanfun1 and @micekja. Welcome to Mayo Clinic Connect.

@oceanfun1 — I'm glad you've been following the posts and saying "exactly right!" I can envision it would feel normalizing and comforting that there are people who "get it" in a way nobody else can, having had traumatic brain injuries (TBIs) themselves. You've described a number of very hard things I'd imagine other TBI patients in this discussion can relate to:

- Thinking you feel so much better and embarking on a task, only to be brought back to a new limitation or reemergence of an old one
- Having to forgo an event on your bucket list with the difficulty of being around noise
- Embarrassment and frustration when others cannot understand your limitations
- Stress causing your cognitive ability to go down.

I'm guessing that @lrbrush @lakelifelady @david33 @treyaj @micekja and others may be able to identify with some of these experiences.

You shared that a hour of brain challenging games or puzzles each day really helps your level of functioning, @oceanfun1. Will you share a little more about what you've seen in your functioning due to working with these?

@micekja — I can only imagine that going from having three jobs; coaching your kids in baseball, football and basketball; and functioning as a single mom to now needing help all the time since your brain damage from the tractor accident has got to be a radical change, and very difficult. Wanting to go back to work and just be a normal 33-year-old — yet not feeling that is possible — must feel incredibly disappointing.

Will you talk more about what was involved in your dialectical behavioral therapy (DBT) and how that has helped you?

It is hard for others to understand how it is that one simply cannot do what might seem like an unchallenging task but seems insurmountable to a TBI person. I was elected to an office last year in a women's charity group and found that I could not go to the meetings or fulfill my duties. That would have been unthinkable before my accident. I felt such guilt and shame but just could not do what was expected of me. I still do not know why that happened.

Hello, my name's Jenn. I am a year and a half out from a tractor accident that left me with "permanent severe brain damage." Prior to the accident I was a single mom of 3 boys. I had 3 jobs, coached my kids in baseball, football and basketball. I have no idea how i managed that. Since my injuries and man, a heck of a lot goes along with brain damage, I need help, all the time. I've had to learn to ask for help from my parents, my now boyfriend and my kids. It's been a long road but my only saving Grace is Dialectical Behavioral Therapy for the disruptive behavior, OCD, Anxiety, depression and PTSD. As for everything now, minimalism and structure are important for me to strive. I cannot work and I struggle horribly with my only achievement each day is handling the minimal responsibility I have. Sometimes it's just getting dressed. There are days where I want to go back to work so badly and there are days that prove it's not a possibility. I love my family deeply but the desire to be a normal 33 year old sucks. I have to take naps a lot but my naps are special because they are called "cognitive breaks". Gold star for taking a nap today Jenn. My memory is barely there and there is no rhyme or reason to what I remember. We just call what I can't remember the "lost files". If you are from up in the cities or don't mind going there, there is a neurologist at the U of M named Thomas Henry. He is fantastic and was able to diagnose my epilepsy and help me manage my seizures.

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!

It is hard for others to understand how it is that one simply cannot do what might seem like an unchallenging task but seems insurmountable to a TBI person. I was elected to an office last year in a women's charity group and found that I could not go to the meetings or fulfill my duties. That would have been unthinkable before my accident. I felt such guilt and shame but just could not do what was expected of me. I still do not know why that happened.