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.

I feel this. I concentrate on what I can do, not what I can't.
I'm having success with Brahmari Breathing 10 minuteS per day. I do it first thing in the AM in bed. See Life Spa com and John Douillard in Boulder, CO

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I had a TBI and 8 hour brain surgery. Now I have memory problems, vision impaired and epilepsy. I can't see anything well enough to do anything fast. I have no depth perception. I carry my address and phone # in my purse because I can't remember it all. My family is all dead from cancer and my friends all moved out of this expensive shit-hole. When I applied for disability they denied me!! This is in Vancouver, Canada. I wrote them a scathing letter back explaining why I can't work. I had a good job. I wouldn't quit so I could lie around and do nothing! I am 57 years old today. They Federal government gives me $1200/month which pays my rent and the Provincial government gives me $300/month to buy food, cleaning products, pay bills and take the bus. It doesn't add up. I was homeless before but now I share an apt with a room-mate I hate. I live off my credit card until I can't make that bill payment. I just want to say to the Feds, Pierre Trudeau and the BC provincial government FK U! I hope you get old, lie around in dirty diapers and have bed sores. If you can't pay the enormous taxes that we pay here, the government literally wants you dead.

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@baurigema

Right temporal lobe. Both my short term and long term memory are gone. My long term is a little better though. I have problems with memory, speaking, cfs, balance basically everything cognitive and nerve related but there's no change is any test, blood work, anything. The problem is is that new symptoms keep arising and getting worse. I'm losing hope that anyone can help.

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Hopefully Mayo can do more detailed investigation in case there is something other doctors missed (a common occurrence based on my experience) in your brain, hormone, autoimmune, or other tests.

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@kayabbott

Left temporal lobe? It would be good to have a list for the mayo doctors on what cognitive functions are declining and how. Such as finding words or other left temporal lobe hits. How is your short compared to long-term memory recall, and any other changes that may or may not be related (balance, emotions, ...anything different). Any changes in your EEG or MRI compared to the past? Would cognitive therapy be useful for you? My moderate TBI was 33 years ago and it nailed by left temporal and basal frontal lobes; I haven't noticed any declines yet other than age associated (I'm 70), and some minor neuropathy.

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Right temporal lobe. Both my short term and long term memory are gone. My long term is a little better though. I have problems with memory, speaking, cfs, balance basically everything cognitive and nerve related but there's no change is any test, blood work, anything. The problem is is that new symptoms keep arising and getting worse. I'm losing hope that anyone can help.

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@baurigema

Hi. I just recently contacted mayo. I had to have part of my temporal lobe removed 11 years ago. I've been having worsing cognitive function since then and no one can figure out why it'd getting worse. Any advice about my appointment with mayo?

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Left temporal lobe? It would be good to have a list for the mayo doctors on what cognitive functions are declining and how. Such as finding words or other left temporal lobe hits. How is your short compared to long-term memory recall, and any other changes that may or may not be related (balance, emotions, ...anything different). Any changes in your EEG or MRI compared to the past? Would cognitive therapy be useful for you? My moderate TBI was 33 years ago and it nailed by left temporal and basal frontal lobes; I haven't noticed any declines yet other than age associated (I'm 70), and some minor neuropathy.

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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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Hi. I just recently contacted mayo. I had to have part of my temporal lobe removed 11 years ago. I've been having worsing cognitive function since then and no one can figure out why it'd getting worse. Any advice about my appointment with mayo?

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@heathertink1970

Hello,
My surgery did stop my complex partial seizures, and I was left with very occasional auras (simple partials).. a lot better than before! I did develop major depression post-surgery though, as well irritating side effects. [My least favorite being the "tip of the tongue"]

I do appreciate your kind words. I felt like I completely lost myself after my TBI. As though I was a mere shell, with nothing inside. I have tried very hard to get better, and to be the best person that I can be. And, unfortunately that does require going in-patient from time to time.

I don't know if this difficulty managing my emotions is due to my life circumstances, where the brain injury is, or a mixture of the two. But, I do often feel emotionally alone (other than help from my psych team).

My answer to your question: Yes, writing what I am thinking and feeling is *much easier * than speaking it. Not due to humility, but I just can't recall in the moment. My mind goes blank. But, with some time and free from pressure, I can think much easier... That's my experience, anyway.

Thanks for reading.

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@heathertink1970 I wanted to share a bit with you because my dad had a traumatic brain injury from a skull fracture in his 60's. It was a few months before I could recognize his personality. He was just someone else, and after the hospital discharge, I took care of him feeding him through a GI tube because he lost the ability to swallow correctly, and helping him relearn language that got messed up. He would invent words by throwing 2 words together, think it was real and argue when I corrected it.

In later years, he became very emotional and would cry easily even about things that happened to someone else like tragic news stories on television. At the same time, he was kind of drawn to it and watched the news all the time. He was still angry about bullies in high school and a toddler who rode her bike into his path as he rode his bike down the street. At that time, he had had a stroke that took away half of his vision so he saw only to the left half, and she came into his field of vision suddenly from the blind side, and he hit the brakes, flew off the bike and broke his collar bone and fortunately was wearing a bike helmet.

After his initial recovery from the skull fracture injury in his 60's, he was able to return to teaching a swim class he was running for adults with disabilities at the YMCA. I volunteered and helped in those classes for both adults and children, and I worked with people with head injuries. In general, they could easily become frustrated and short tempered, and I saw that in my dad too. He had a short temper even before his head injury, and it got worse and he lost the ability to problem solve and reason well, but didn't realize it. He always felt sorry for himself and couldn't allow himself to be happy because something would set him off. Sure there were times of contentment, but with advancing age and him worrying about leaving my mom alone when he was gone, he wasn't very happy.

When I read your words, I hear hope because you recognize what the challenges are and are trying to overcome them and doing a good job with it. I am glad you have some help with things. My dad never did recognize his limitations. I think you have the ability to inspire others with your words and honesty, so I would encourage you to keep on writing and sharing.

Blessings,
Jennifer

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@colleenyoung

@heathertink1970, you sound like a very strong woman who has worked hard to accept the hand she was dealt and to know how and when to get the support and help she needs.

Did the brain surgery stop the seizures? Is writing easier to circumvent the struggle with finding words? I ask because your writing is beautiful.

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Hello,
My surgery did stop my complex partial seizures, and I was left with very occasional auras (simple partials).. a lot better than before! I did develop major depression post-surgery though, as well irritating side effects. [My least favorite being the "tip of the tongue"]

I do appreciate your kind words. I felt like I completely lost myself after my TBI. As though I was a mere shell, with nothing inside. I have tried very hard to get better, and to be the best person that I can be. And, unfortunately that does require going in-patient from time to time.

I don't know if this difficulty managing my emotions is due to my life circumstances, where the brain injury is, or a mixture of the two. But, I do often feel emotionally alone (other than help from my psych team).

My answer to your question: Yes, writing what I am thinking and feeling is *much easier * than speaking it. Not due to humility, but I just can't recall in the moment. My mind goes blank. But, with some time and free from pressure, I can think much easier... That's my experience, anyway.

Thanks for reading.

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@heathertink1970

My TBI occurred 18 years ago. . I was one-year post surgery, in my left temporal lobe, to remove areas in which I had uncontrollable seizures. Just that time of year, and a little bad luck I guess. I slipped on the ice in a parking lot and caused a little bleeding inside my left temporal lobe... I was lucky: I had extra area for the blood and swelling (I was watched when I got to the E.R. though).

My TBI unfortunately intensified the effects of my brain surgery, both physical and emotional. At that time, I was a stay-at-home mom to two little girls (aged 2-3 and 5). I tried hard to be a good mom, but I struggled every day. The major depression that had developed post-surgery quickly became severe. My husband wasn't understanding or sympathetic (at all) with my physical changes. To him: I looked fine & was therefore blowing everything completely out of proportion. Our marriage quickly fell apart, despite efforts in therapy. The end of my marriage devastated me, and I knew that I certainly couldn't provide for our daughters, so I moved out.

I have struggled with major depression since, and work a lot with psychologist and psychiatrist. I also have a helper to assist me with processing regular paperwork, as well as maintaining my finances.

My memory was strongly challenged prior to my TBI, but I do have a tougher time finding the right word(s) a lot. Especially when I am feeling under pressure or emotional. In those moments, forget it.. and I move onto a different thing. Moving on has become easier for me, as several years passed, and I realized that the harder I try to recall, then I lose the entire subject that I was thinking about. And that is REALLY frustrating! Cest la vie!

I hope that I've answered your original question.. Best wishes to everyone!

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@heathertink1970, you sound like a very strong woman who has worked hard to accept the hand she was dealt and to know how and when to get the support and help she needs.

Did the brain surgery stop the seizures? Is writing easier to circumvent the struggle with finding words? I ask because your writing is beautiful.

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My TBI occurred 18 years ago. . I was one-year post surgery, in my left temporal lobe, to remove areas in which I had uncontrollable seizures. Just that time of year, and a little bad luck I guess. I slipped on the ice in a parking lot and caused a little bleeding inside my left temporal lobe... I was lucky: I had extra area for the blood and swelling (I was watched when I got to the E.R. though).

My TBI unfortunately intensified the effects of my brain surgery, both physical and emotional. At that time, I was a stay-at-home mom to two little girls (aged 2-3 and 5). I tried hard to be a good mom, but I struggled every day. The major depression that had developed post-surgery quickly became severe. My husband wasn't understanding or sympathetic (at all) with my physical changes. To him: I looked fine & was therefore blowing everything completely out of proportion. Our marriage quickly fell apart, despite efforts in therapy. The end of my marriage devastated me, and I knew that I certainly couldn't provide for our daughters, so I moved out.

I have struggled with major depression since, and work a lot with psychologist and psychiatrist. I also have a helper to assist me with processing regular paperwork, as well as maintaining my finances.

My memory was strongly challenged prior to my TBI, but I do have a tougher time finding the right word(s) a lot. Especially when I am feeling under pressure or emotional. In those moments, forget it.. and I move onto a different thing. Moving on has become easier for me, as several years passed, and I realized that the harder I try to recall, then I lose the entire subject that I was thinking about. And that is REALLY frustrating! Cest la vie!

I hope that I've answered your original question.. Best wishes to everyone!

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