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!

@treyaj

Hello Dawn, your sympton story is so similar to mine. I am an RN CNS MSSW. My injuries came from being stopped at a redlight and rear ended by a large suv, the driver going 45 mph. On a cell phone. I was wearing a seatbelt, but the impact was so intense that I was knocked out and dx with brain concussion shear injury, brain stem concushion and severe injuries to my entire spine. Damage to my sight and hearing. I was in perfect health, never had any type of injuries in my life except rotator cuff tear. I am petit but had a good amount of muscle mass, that probably saved my life. I was 68 at the time. In a split second, I became old. Your cognitive symptoms sound similar to mine. I have memory problems, math and writing problems, speech word problems, intolerance of large groups, noise, and anxiety with being in traffic. And more. Reading what you shared helped me so much. I am very greatful to have found this group. Thank you all for your sharing.

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Thank you for sharing your experience with us. I am so sorry this has happened to you. I'm glad you found us and I hope you will continue to see positive recovery as time passes. The recovery process can be slow but please don't give up!
Dawn

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@techi

@treyaj l had a brain injury in 1997 viral encephalitis. I worked in a hospital and thank God the doctor knew that l was in trouble. I had the flu and went to a new doctor and he just told me to go home 104 temp. I was in and out of consciousness and my older child just graduated from high school and l had 4 other young children. Yes cognition is the bible issue. Math was no problem for me but writing and signing my name was a big problem. Also balance and slurred speech. I was very depressed at the beginning l had young children and didn't know what was happening. We had just moved in a house 2yrs ago l had started working a new job a year ago plus the hospital. And you work turns around because people don't understand because you look ok on the outside. I had to be put on antidepressants and l was a person who was always happy and love learning. In 2014 l had another bout but now it was my liver and that God l was taken off the antidepressants. Now l.have an Autoimmune disease. Hepatic encephalopathy. I was so tired of not being able to remember even if l read a paragraph. I was in church and l cried and prayed to the Lord to please give me my memory back. And he has definitely done that. I read books, listen to music it helps with memory. I learned to do research and l reading books on how you can retrain your brain. It can be done. Because while l was going through this l went to college and l had tutors and had to have test on audio and it took me along time to get my degree. After l went to the mayo clinic and they took off a lot of meds. I went to the college and took a test and l got a 90. So l know it was an answer to pray. So don't give up. I t can happen but it take alot.

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Lisa,
Your positivity is wonderful! Yes, I agree, don't give up!!!
Dawn

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@treyaj

I would love to hear more about how to focus oxygen on ones frontal lobes. I am familiar with CBT. I posted my story here, but I can't seem to find it tonight. I did begin singing with tapes again and listening to music more often, both recommended on this site. The singing and staying focused on the lyrics has been a shock! I kept being distracted by other thoughts. I had no idea it was that severe. But I just start over and it truly is helping. I have speech problems, wrong word, mispronounce, slight stutter, etc. The singing also comforts me and decreases my anxiety. If I am tired, hungry, or have to drive in traffic, my speech is worse. The day after my injury, my speech made no sense at all, so many wrong words. I am greatful for all of you.

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So glad to hear that you're trying the singing! My deficits become much worse when I am tired. Often my body will try to tell me ahead of time that I need to take a break. This is usually in the form of a headache. When I keep pushing forward, too hard, I end up paying the price and then I have to rest. I also have issues with using the wrong word in my speech. So Annoying!! Hang in there and lets keep supporting one another!
Dawn

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Thank you to everyone for sharing. There is strength and great healing that comes from not feeling alone and experiencing a sense of belongingness again. I also continue to grieve the loss of the past me, but with time and acceptance of the now me, I find my awareness focusing more on the future now and much less on how I used to be. Thanks to a group member who suggested singing or playing a musical instrument. Singing has helped my speech problems immensely. Remembering all or most of the lyrics has increased self confidence, improved my word finding problem, and increased my joy and sense of humor when I make mistakes or simply sound weird. My social anxiety has decreased as has isolating myself so much. Strangely, I no longer feel less whole. I feel more whole. I now know a different experience of change, loss, rebuilding, and regaining. I know more about life, loss, suffering, possibility and the deeply spiritual importance of valuing and supporting my own will to live. Life matters, things unplanned happen, but I can love and choose the quality of my life.

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@dawnpereda

Thank you for sharing this video. I think it speaks a truth that many of us are living. Yes! we are still alive but as a different person. I continue to morn the loss of myself everyday. The only way is forward but it can be so hard not to look back!

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Yes we are still alive and as a different person. A favorite song I sing for self support is Getting to Know You, and So Lucky to Be Loving You! Maybe singing will help you too.

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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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So sorry to hear that you are dealing with all of this. We are never alone, but it can be hard to find others out there. Thank you for connecting and sharing.
Dawn

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@lrbrush

@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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Lee,
You bring up some very good points. Faith is so important. Finding a medication that can help is great also. I'm so glad you found us and glad that you shared. I feel that by sharing, we strengthen on another.
Dawn

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@treyaj

Thank you to everyone for sharing. There is strength and great healing that comes from not feeling alone and experiencing a sense of belongingness again. I also continue to grieve the loss of the past me, but with time and acceptance of the now me, I find my awareness focusing more on the future now and much less on how I used to be. Thanks to a group member who suggested singing or playing a musical instrument. Singing has helped my speech problems immensely. Remembering all or most of the lyrics has increased self confidence, improved my word finding problem, and increased my joy and sense of humor when I make mistakes or simply sound weird. My social anxiety has decreased as has isolating myself so much. Strangely, I no longer feel less whole. I feel more whole. I now know a different experience of change, loss, rebuilding, and regaining. I know more about life, loss, suffering, possibility and the deeply spiritual importance of valuing and supporting my own will to live. Life matters, things unplanned happen, but I can love and choose the quality of my life.

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Bravo! I'm so glad that you are seeing that your life DOES matter! Choosing love is always the best path!
Dawn

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@treyaj

Yes we are still alive and as a different person. A favorite song I sing for self support is Getting to Know You, and So Lucky to Be Loving You! Maybe singing will help you too.

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I love your positivity and your selection of songs! Very fitting for this group!
Dawn

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@oceanfun1

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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Great post! I'm glad you found us and so glad that you are sharing. The brain puzzles sound like a great idea.
Dawn

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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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Jenn,
You have had such a life changing experience. I can relate! Those naps are so important!! Thank you for sharing your docs info. Perhaps he can help others. Keep taking life one day at a time!
Dawn

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@treyaj

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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Day by day it's a new path. Keep looking forward!
Dawn

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@dawnpereda

So glad to hear that you're trying the singing! My deficits become much worse when I am tired. Often my body will try to tell me ahead of time that I need to take a break. This is usually in the form of a headache. When I keep pushing forward, too hard, I end up paying the price and then I have to rest. I also have issues with using the wrong word in my speech. So Annoying!! Hang in there and lets keep supporting one another!
Dawn

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My losses become worse when I am tired, hungry, and anxious too. If too much is happening I get anxious and exhausted. The anxiety makes it really difficult to rest. I just keep walking around. Walking around outside helps, if I remember to go out! "Pushing forward too hard is a problem for me too at times. We are both RNs, I think that is a nurse related behavior. When I hear myself use the wrong word, (at first I didnt even hear it) I work with immediately correcting it and relating it in someway to what I was trying to say. I correct it with emotion and emphatic energy and with the correct word. Somewhere I read that increased emotion with the correct word, reprograms the brain. It has helped slowly. Thank you Dawn for your support. You are so therapeutic! I love getting to know you!!

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@dawnpereda

Day by day it's a new path. Keep looking forward!
Dawn

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@dawnpereda I love your statement “day by day, it’s a new path. Keep looking forward”. If you’re OK, I might write it out and post it around my house!

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@treyaj

My losses become worse when I am tired, hungry, and anxious too. If too much is happening I get anxious and exhausted. The anxiety makes it really difficult to rest. I just keep walking around. Walking around outside helps, if I remember to go out! "Pushing forward too hard is a problem for me too at times. We are both RNs, I think that is a nurse related behavior. When I hear myself use the wrong word, (at first I didnt even hear it) I work with immediately correcting it and relating it in someway to what I was trying to say. I correct it with emotion and emphatic energy and with the correct word. Somewhere I read that increased emotion with the correct word, reprograms the brain. It has helped slowly. Thank you Dawn for your support. You are so therapeutic! I love getting to know you!!

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Yes, I agree that our RN behaviors can take over at times! I appreciate your support as well. This is such a difficult process. I know some days are better, and I think "I've got this beat". And then there's other days where I feel like I've taken steps back. I just keep trying to move forward and try to stay positive. Hang in there!
Dawn

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