Adult Life after a Traumatic Brain Injury

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!

@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

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!

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.

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.

Friends and survivors -- I am posting this on behalf of my wife. We just found this chat room this morning and it has already been very helpful.

My wife had suffered concussions in the course of years of horseback riding. She had severe reactions to both her Pfizer Covid shots in the spring of 2021, then suffered a TBI when a guy crossed the yellow line and hit her a year later, in the spring of 2022. She had to retire from the practice of law, no longer drives, and is unable to navigate the constant distractions and complications of using digital devices like laptops and cellphones. Immediately following her accident, she was extremely sensitive to light and loud sounds, which has improved. She wore prismatic glasses for a time but no longer needs them. She struggled to read but that is improving as well. Her primary problems now are aphasia, a lack of volition, and anxiety. As a formerly high-performing professional, she struggles to accept her new "you," but she's determined to get better and we're relentless in our pursuit of that goal.

The ignorance of the medical profession concerning the issues adults experience with TBI or post-concussive syndrome is appalling. For two years, my wife labored under a diagnosis of Alzheimer's despite the absence of key symptomology until a DNA test and the new Alzheimer's blood test proved she didn't have it. Sadly, our experience is that if a woman in her late 60s complains of confusion and memory issues, the first assumption is Alzheimer's which creates a confirmation bias among treaters that is hard to overcome. All of my wife's progress is the result of our own independent research and pushing for answers. The Mayo Clinic is obviously years ahead of everyone else and it's terrific that they've provided us this forum for expression and connection.

I want to thank everyone who has posted on this site. You're are all heroes, and know that because of you my wife and I are having a better day. I hope our post helps, too. The more we talk about this the better. This needs vastly more attention from the medical profession than it gets. In the meantime, never forget:

1. You are not alone.
2. Speak up for yourself.
3. This is a long slog; hang in there and keep pushing.

We're all rooting for us, and more are joining us every day.

do you have any other weird symptoms besides the head pain?. It damaged my left eye and hearing. Left me with a dent on my forehead. And now I'm sweating under my arms and have to use special deodorant that stings like crazy. I also started sneezing but exaggerated sneezing, sometimes a dozen times in a row. driving my husband nuts. My doctor is going to explain this to him next week. So many of your involuntary motions come from nerves located at your brain stem. So now I have to worry that the lesion is getting bigger pressing on those nerves. In the meantime trying to get reimbursed for my medical bills from the people that caused this is adding more stress. They seem to think that even though they admit they are at fault, I'm getting the blame for not realizing the walkway was a hazard...You just can't win!! Keep in touch if they find something for your head pain. Im tired of getting no sleep....