Adult Life after a Traumatic Brain Injury

Posted by Dawn Pereda @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!

Interested in more discussions like this? Go to the Traumatic Brain Injury (TBI) Support Group.

@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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@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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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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@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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@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

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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@lisalucier

Many of you have talked about experiencing lingering symptoms after a TBI and the struggles you've faced, therapies you've undergone and how you have coped through this time. It would be great to hear how things are going for you, and I believe that your experiences will also benefit others in this discussion.

@kobeelya - how are you doing? Are you continuing with the homeopathic remedies you were using?

@dawnpereda - wondering if you ended up pursuing the intensive therapy program? Have you made more podcasts?

@carnes - how are things going with the exhaustion and difficulty staying asleep you were experiencing?

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Thank you for your interest. Sorry I've been so absent. I've had lots of life changes that have been hard for me to deal with. Trying to get back on track! No, I did not do any further therapy. I have kept my care at the Mayo Clinic in Rochester, MN, for a variety of reasons. Yes, I have made another podcast. It was with my youngest daughter, Faith. She is the focus of the podcast. We were interviewed by StoryCorp. about her life as a female teenager with Autism. If anyone would like to hear it, its on the Rochester (MN) Public Library web page. I had the honor of interviewing my daughter all about her life. It was such a fun experience. I would like to do some speaking about being an adult with a brain injury but am not sure how to get that going. A process to figure out! I really want people to know what its like to be living like this and also to let others know that they are not alone. The world is such an overwhelming place and just knowing you're not alone can make such a big difference!
Dawn

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@carnes

I’m a 72 year old woman who lives with my husband. He is only home in the evenings, I’m grateful for that. My traumatic brain injury happened in a car accident in 2015. My life has not been the same since. I work with others mainly on the telephone since I have trouble walking and getting around. I go to the Y to senior swim when I’m blessed with someone to take me. But I find all of what you said, certainly helps with memory. I get exhausted so easily, trouble staying asleep. I find it difficult to explain all the things wrong with me but pretty much all on this page, is me now. It is so helpful and kind to read about others going through what I never thought would be of me. What I do on the telephone takes a lot of working brain so it is hard but helps keep what still works and prayerfully progress. I’ve always disliked talking on the telephone, now I’m grateful for it. I over-react when in a car also, but I cannot help it. I find meditation, prayer, helping others gets me out of self; which makes a happier person. I study quite a bit but since the accident it’s more difficult to concentrate, pay attention, etc. I find myself reading the same thing over and over, it does get a little better. Thank you and everyone on this page for being there. Sharon.

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Great information! Prayer can be a balm that heals many ailments. I'm glad you found this blog and I'm glad to you keep striving for improvement every day!
Dawn

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@kobeelya

Hullo Dawn

I totally empathise with your experience. I had a similar experience my self and my symptoms were loss of short term memory, loss of balance, eyes that found it a major effort to open... and muddled speech. My brain often felt very foggy. I also had to give up my career.

What I found - 14 years after the RTA when I was knocked back to the kerb and the base of my skull and top of my neck hit the edge of the kerb like a "karate chop" - was Hyperbaric Oxygen which is oxygen under pressure. It was developed as a therapy for deep sea divers and after many years has helped people with M.S and head injuries. Perhaps the Mayo Clinic will have some experience of this therapy.

What is helping me - is writing it all down for my family - so that they understand exactly how I felt straight after the car accident and how I have felt through the years.

One set of symptoms that I have not read about anywhere - is that when I was floating between being unconscious and "coming to" was that I had absolutely no pain or sensation of my body even though I also had a broken leg and shoulder-blade . I also had no active movement so could not open my eyes BUT the strange symptom that I also had was that I COULD HEAR now and again! I heard people talking and heard..... "Someone get her a blanket she must be freezing cold " and " Don't lift her like that she might have a broken neck".... which I did have though luckily only a hairline fracture. I heard someone saying " You've been knocked down by a car " but was not taking this information into my brain as I thought I was still in my bed!!! The only feeling I had was of the soft bed I was lying in!!!

I am looking into nutritional support for my brain . it is much easier to deal with a broken arm or leg!!
Over time it is amazing how some parts of the injured brain heal... otherwise I could not write this post as I now find learning new skills very difficult.

I HOPE THIS HELPS

cLAIRE

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Thank you for sharing!
Dawn

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@hopeful33250

Hello @dawnpereda @kdubois @techi @ujeeniack @lakelifelady @carnes @matttheschmatt @beemerw47 @jnewburn @suzyann @techi @danmlee @oceanfun1 @janneg and @david33 and any others who might be dealing with TBIs.

I wanted to share a story about a friend of mine, who dealt with a traumatic brain injury by singing. His story was recently published in our local newspaper, here is the link, http://www.hometownlife.com/story/opinion/columnists/2017/08/09/inspiration-look-farmington-hills-listen-singing/104370448/

This is not an isolated incident of how music helps heal the bran. There was recently a couple of articles in "Neurology Now" about positive effects of
singing,

– Tuned In: After a researcher approached a group of people with Parkinson’s disease to start a choir, a series of small miracles unfolded. http://journals.lww.com/neurologynow/pages/articleviewer.aspx?year=2016&issue=12050&article=00014&type=FullText

– Noise Makers: A choir for adults with neurologic conditions allows them to express their creative sides. http://journals.lww.com/neurologynow/pages/articleviewer.aspx?year=2017&issue=13040&article=00009&type=FullText

I would also encourage you to read the Mayo Connect discussion called, "Music Helps Me" https://connect.mayoclinic.org/discussion/music-helps-me/

TBIs carry with them an aftermath that can make life very difficult to deal with. I would encourage you however, to consider music as part of your therapy. If you can find a music therapy group in your area that would be great. However, don't hesitate to tune into some of your favorite music and sing a long.

Will you give music a try and report back to us?

Teresa

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Teresa,
Thank you so much for posting all of this information. Its very helpful. The research is telling us that music can make a difference. Music can calm us, excite us, and help us to remember. Its an absolute blessing in all of our lives!
Dawn

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