Adult Life after a Traumatic Brain Injury (TBI)

Posted by dawnpereda @dawnpereda, Sep 27, 2017

Hi, My name is Dawn and I am an RN. Just over two years ago I received a work related injury. This injury has left me with a traumatic brain injury (TBI). Even though two years have passed, I still suffer with lingering tbi symptoms. I have some issues with memory. Some things I remember with no problems, other things I just don’t remember and I can’t explain why… I also suffer with issues related to mood dis-regulation. I can be angry at times and not understand why or end up having explosive outbursts. This has greatly impacted my life. I still work but no longer with patients. Also, this has been a huge turn around for my family. I’m no longer the mom who has everything under control. I used to work full time, manage my kids’ schedules, pay household bills, and keep my house clean. Now I struggle to remember to brush my hair before leaving for work. My husband pays the bills and my kids write their schedules on a large calendar (that hangs in our dining room) so I can visually be reminded where they are and what they are doing. I am a “new” me and I never would have imagined this journey for myself.

I know there are things out there for youth that suffer from concussion/tbi, but I don’t always find a lot of discussion/support for adults, like myself. I get up every day and work to live my life to its fullest. If you would like to know more about my life and journey, you can listen to a podcast that I did with my family. Its called “Terrible, Thanks For Asking”. We’re season 1, episode 5. Its brutally honest. If any of this rings true to your life please join this discussion with me. Thanks for your time!

@cjackura

Hi, thanks for sharing. I was in a head-on car collision 2 years ago, and I'm struggling to live a normal life. I broke so many bones we never even counted, and have undergone 9 surgeries in the last 2 years.I have rods and screws in my back and my life is full of pain from the various injuries. I walk, ride a stationary bike, and swim. I also struggle everyday with the thought of what I used to be like. I was a junior high school teacher and a marathon runner. Now I'm a disabled middle-aged woman. I also suffer from depression. Going to weddings is very difficult for me also. Riding in a car can be difficult, and I really limit freeway driving. Because of the chronic pain in my back my doctor has limited how much sitting I should do. It is comforting to hear that there are others that have such similar symptoms, and it makes me feel a little less crazy.

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I was touched by your comment that you struggle everyday with the thought of what you used to be like. I do the same. It is like the loss of a good friend. I can feel myself moving thru a process of loss and grieving. And even still disbelief. I work with intention to let go of that attachment to my lost self, the best reminder is when I can just feel the geatfulness of being still alive. I don't know why I am here, but I am greatful to have enough life to figure this new life out. I suffer the loss of my "previous" brain, but find some joy and good energy in the challenge of the "new." That is the past me. I was ALWAYS like that. Insatiably curious. I appreciate all of you so much.

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@hopeful33250

Hello @lakelifelady and @treyaj

As both have found value in music as a healing art, I thought I would direct you to some Connect discussions on music and art. You will find like-minded Members in these groups,

https://connect.mayoclinic.org/discussion/what-music-does-to-our-body/?utm_campaign=search

https://connect.mayoclinic.org/discussion/music-helps-me/?utm_campaign=search

https://connect.mayoclinic.org/discussion/art-for-healing/?utm_campaign=search

Please feel free to share your own experiences in these groups!

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Thank you so much.

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@treyaj

I was touched by your comment that you struggle everyday with the thought of what you used to be like. I do the same. It is like the loss of a good friend. I can feel myself moving thru a process of loss and grieving. And even still disbelief. I work with intention to let go of that attachment to my lost self, the best reminder is when I can just feel the geatfulness of being still alive. I don't know why I am here, but I am greatful to have enough life to figure this new life out. I suffer the loss of my "previous" brain, but find some joy and good energy in the challenge of the "new." That is the past me. I was ALWAYS like that. Insatiably curious. I appreciate all of you so much.

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Grief for what you have lost is a very good point, @treyaj. I'm sure that others share that feeling.

We have a discussion group on Connect titled, Grief and Loss: How Are You Doing? While the majority of the people in that group are discussing losses due to death I think your comment about loss that comes from health challenges is also significant.

Here is the link to that discussion, https://connect.mayoclinic.org/discussion/loss-and-grief-how-are-you-doing/. If you are comfortable doing so, please post about this loss. I'm sure others will do so as well.

I'm glad that you said that "but I am grateful to have enough life to figure this new life out. I suffer the loss of my "previous" brain, but find some joy and good energy in the challenge of the "new." This is important for everyone who has experienced a loss of some type.

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I have to say "WOW", I have found someone I can truly relate to without someone calling me crazy. My experience started 2 1/2 years ago. I was helping my husband and friend unload a trailer full of split wood, and my husband threw one and I raised up at the same time, and the wood hit my right temple.
Now I get angry over stupid things, and I have no energy to do anything. My family would say I have done or said things that I truly don't remember, so now I sit in my own corner, and only try to speak when needed because I'm scared of the outburst of anger and not knowing the cause.
I went to counseling and they put me on medicine, but all the medicine did was make my symptoms worse, so I told the doctors I was taking any more of them. I'm trying to go back to school, (online) to see if staying to one thing while others here at home take care of everything will help. My husband tells me he understands why I'm ignoring everything and everyone and he wishes he could help, but he also has issues also with a shunt in his head that is changing his personality, which doctors tell us it's all in our heads and nothing is wrong with us and we all just want to have something to complain about.
So I stopped talking to the doctors, and pray every night for my symptoms to get better, as well for my husband to get the help he deserves.

Thank you again for this post, I know it wasn't easy for you to post this. It helped me and left me to know I'm not alone.

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@david33

I have to say "WOW", I have found someone I can truly relate to without someone calling me crazy. My experience started 2 1/2 years ago. I was helping my husband and friend unload a trailer full of split wood, and my husband threw one and I raised up at the same time, and the wood hit my right temple.
Now I get angry over stupid things, and I have no energy to do anything. My family would say I have done or said things that I truly don't remember, so now I sit in my own corner, and only try to speak when needed because I'm scared of the outburst of anger and not knowing the cause.
I went to counseling and they put me on medicine, but all the medicine did was make my symptoms worse, so I told the doctors I was taking any more of them. I'm trying to go back to school, (online) to see if staying to one thing while others here at home take care of everything will help. My husband tells me he understands why I'm ignoring everything and everyone and he wishes he could help, but he also has issues also with a shunt in his head that is changing his personality, which doctors tell us it's all in our heads and nothing is wrong with us and we all just want to have something to complain about.
So I stopped talking to the doctors, and pray every night for my symptoms to get better, as well for my husband to get the help he deserves.

Thank you again for this post, I know it wasn't easy for you to post this. It helped me and left me to know I'm not alone.

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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?

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@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.

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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.

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@lakelifelady

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.

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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.

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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.

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@kdubois

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!

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@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.

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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.

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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?

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@micekja

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.

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

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@lakelifelady

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.

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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.

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@lisalucier

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?

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You so clearly describe this process. I still keep believing that I will heal and be myself again. But this week was the three year anniversary of my being rear ended and seriously injured and all I seem to be doing is comparing the past to what is now. Some days are strong and moving forward, other days stuck or moving backwards. But I am constantly in awe of how I took my brain for granted! Everything was so easy, now…not so much.

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