Adult Life after a Traumatic Brain Injury (TBI)

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!

Thanks so much for even reading my post….It gives me strengh to know I have someway helped others find thier way. Its a fight everyday but one I will NEVER stop fighting.
Best of luck to you in your recovery 3 years is a very long time you are my HERO!!!
Keep in touch
William

Liked by Dawn Pereda

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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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Hi Dawn, its William….
Thank you for your strengh to keep moving forward
Proves it can be done.
I feel your pain deep within my soul…..
Keep going you deserve getting better.
Much love
William

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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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All i can say is Wow back….sorry you are having doctor issues….I have had no better luck in that department infact when I asked for help over these issues i was held in a phyic ward for 3 days and now am being treated even worse then before.
They didnt beleive me before and its much worse now…..
Trying to lay low like you, keep my head down and stop looking for help..
There must be people, like on this site that understand us..
We are in this toghether you always have me
Keep well my friend
William

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Hi, all. I’m new to this discussion and have experienced some of the same things as you. I have a brain lesion not a TBI. Anyway, I saw a show on public television tonight that gave me hope. It was Going the Distance:Journeys of Recovery. The show followed 4 people from injury through recovery (somewhat). Talked about cognitive therapy being so valuable. If you can find the show on a local PBS station, it’s well worth watching!

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@becsbuddy

Hi, all. I’m new to this discussion and have experienced some of the same things as you. I have a brain lesion not a TBI. Anyway, I saw a show on public television tonight that gave me hope. It was Going the Distance:Journeys of Recovery. The show followed 4 people from injury through recovery (somewhat). Talked about cognitive therapy being so valuable. If you can find the show on a local PBS station, it’s well worth watching!

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Thanks for sharing this info, @becsbuddy. Here is a six-minute YouTube video on Going the Distance, https://www.youtube.com/watch?v=BZOI-qW4R3E

If it was on PBS you can often go to your local PBS website and find a streaming video of the entire show.

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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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Could you provide more information on the CBT? What is the name of the doctor you are seeing? I’m in desperate need for that therapy.

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@hopeful33250

Thanks for sharing this info, @becsbuddy. Here is a six-minute YouTube video on Going the Distance, https://www.youtube.com/watch?v=BZOI-qW4R3E

If it was on PBS you can often go to your local PBS website and find a streaming video of the entire show.

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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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@mrcampbell

Could you provide more information on the CBT? What is the name of the doctor you are seeing? I’m in desperate need for that therapy.

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Thank you for sharing this information. It sounds as though, you have found some wonderful therapy to help you recover. It's a day by day process. I'm so glad you are making progress!
Dawn

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@willbc

Hi Dawn, its William….
Thank you for your strengh to keep moving forward
Proves it can be done.
I feel your pain deep within my soul…..
Keep going you deserve getting better.
Much love
William

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Hello William!
Thanks for joining us. Sorry I've been slow to reply. I've been dealing with some health related things but hope to be more active again. Being able to support one another is a great strength and a gift we can share to make each person's life better.
Glad your here sharing with us!
Dawn

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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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Thank you for your posting . You have a beautiful way of saying what so many of us are dealing with because our personal loss.
Dawn

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@becsbuddy

Hi, all. I’m new to this discussion and have experienced some of the same things as you. I have a brain lesion not a TBI. Anyway, I saw a show on public television tonight that gave me hope. It was Going the Distance:Journeys of Recovery. The show followed 4 people from injury through recovery (somewhat). Talked about cognitive therapy being so valuable. If you can find the show on a local PBS station, it’s well worth watching!

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Welcome and thanks for sharing . I feel we all have something we can add that will help others.
Keep posting, 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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@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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@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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@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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