Adult Life after a Traumatic Brain Injury

I find it inspiring that you got out there and got elected! Maybe the fact that you felt "could not do what was expected of me" was just being too hard on yourself. I admire your courage! I am struggling with going out there at all! I used to be so busy before my injuries. You gave me a boost today, thank you.

Each time I read your story, I am so touched by your strength, courage, resilience, and sense of humor. Thank you for sharing.

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?

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.

@kdubois Hi Kelly. Could you help me with the doctors you saw that got you on the right track. I have had a tumor removed as well and am experiencing the same post op symptoms. I’m trying to get on the right track.

I have been following your posts with interest and often find myself saying exactly right ! My original Tbi was about 11 years ago and have had two freak accidents since which have brought the pain and symptoms of the first tbi back and more. My latest tbi was in August of this year. I find it challenging to access my level of functioning. I think I am so much better and feel great about it then a task will emerge that I simply cannot do and I am brought back to a new limitation or reemergence of an old one. I have a bucket list, got tickets to a concert that was on my bucket list and then forced with the difficulty of being around noise realized two weeks before i simply could not go. Limitations have caused embarrassment and frustration when people like a transit clerk cannot understand why I cannot buy a ticket and yells at me for it. I am in my sixties and of course if I could do it I would. Stress really causes my cognitive function to go down. I have bad migraines, fibromyalgia, neuropathy and balance issues which I have been told are connected to the neurological impact of the tbi. Together they make daily living a challenge. It would be easy to spend all my days resting which I did for several years. The pain can be brutal. I find a hour of brain challenging games or puzzles each day really helps my level of functioning. It really has made a positive impact over the past two years that I have been doing them. Faith as someone mentioned earlier is such help in reaching some level of acceptance and peace with my condition. This site is such an inspiration and helps me feel like I am not going crazy and there are people who get it in a way that nobody else can. Look forward to hear more from fellow travelers.

Your post is so true, @lakelifelady. There can be a lot of guilt and shame connected with losing abilities whether they are physical abilities or cognitive abilities. It takes a lot of courage to face up to there challenges and realize that you are not defined by your impairments.

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.

@treyaj @david33 Because of my profession and past life experiments, I can reassure you that we are not alone and so many people need help.

I have had 14 loss-of-conscious concussions throughout my active life, 6 of which occurred during my senior year in college over a five month period. I have experienced most every symptom associated with TBIs except balance issues (uncontrollable rage, lack of focus, headaches, memory loss, light sensitivity, anxiety, ringing in ears, depression, etc).

It took about four years of experiencing issues before I reached out for any help. My first experience with the medical profession was not what I had hoped but in all fairness I did not follow up on their advice. I was just asked recently why I have not sought follow up care and I could not explain it to someone who has not experienced the inability to get out of bed, flash-rage towards everything and everyone.,,simply “white-knuckling” every second of the day. The associated shame, guilt and fear are overwhelming and effect every aspect of my life.

I am still here today because of:
Faith-Medication-Faith.

My faith kept me alive until I was able to get on the right medication. The medication put me in a place where I could begin to heal. My faith is changing my rage into love and my other sysmptoms seem to be fading.

I believe you can only heal to the level of what you believe in. If you believe in yourself, you will only heal to the level you believe you can. This is where I think the medical profession fails.

Whatever you believe in, grasp onto it and live it...eliminate the battles in your brain. I believe the fancy medical name of it is congestive dissonance.

BTW- if a doctor tells you “it is only in your mind”, run. He/she can’t help you. Just my POV.

Hello @david33 and thank you for joining in this discussion. I am so sorry to hear of your accident when you were hit by the wood. It sounds as if you have some problems related to this accident. Were you examined and treated for a TBI after your accident with an MRI or scan?

It sounds as if you could use some help with physical, occupational therapy at the very least. I encourage you to see a neurologist and get examined and treated. As you have read from these other discussions, there are treatments that help. You don't have to go this alone.

That is wonderful that you are able to take some online classes. Learning new things can be invigorating. Are you enjoying the classes?