1. < Traumatic Brain Injury (TBI)

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!

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

Dawn Pereda | @dawnpereda | Oct 23, 2017
In reply to @ujeeniack "LOW LEVEL LIGHT THERAPY (red light) MIGHT HELP. IT WORKED FOR A FORMER SENIOR AT MY..." + (show)
@ujeeniack

LOW LEVEL LIGHT THERAPY (red light) MIGHT HELP. IT WORKED FOR A FORMER SENIOR AT MY PLACE AFTER A CAR ACCIDENT.

Jump to this post

Thank you for your suggestion. I appreciate all the input. I figure by reaching out we can help one another on this crazy adventure we call life!

REPLY
Kelly, Alumna Mentor | @kdubois | Nov 3, 2017

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!

REPLY
5 replies
Dawn Pereda | @dawnpereda | Nov 3, 2017

Kelly, Thanks so much for sharing! I find all of our situations are similar and different all at the same time. I'm glad you shared what's worked for you. I think we can teach each other so much while giving a voice to this recovery process. I'm very eager to learn more about the CBT that has helped you so much. I will be checking into it. I full heartedly agree with your last sentence. Yes! There is hope!

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Nov 6, 2017

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

REPLY
7 replies
lakelifelady | @lakelifelady | Nov 6, 2017
In reply to @hopeful33250 "Hello @dawnpereda @kdubois @techi @ujeeniack @lakelifelady @carnes @matttheschmatt @beemerw47 @jnewburn @suzyann @techi @danmlee @oceanfun1 @janneg and..." + (show)
@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

Jump to this post

Yes, I have been doing music, flute, piano, voice and Native American flute my entire life. During my time of acute injury I listened to music on CD every single day to ease my anxieties and pain. Music is in my soul......it heals.

REPLY
lakelifelady | @lakelifelady | Nov 6, 2017
In reply to @kdubois "Hi @dawnpereda, I have a brain injury also, and it's taken me years to come to..." + (show)
@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!

Jump to this post

It is so encouraging and affirming to read others list of symptoms and to recognize one's self in the post. Oh my yes, that is how it is! However, we must keep up our strategies to manage and cope! We can help each other!

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Nov 6, 2017
In reply to @hopeful33250 "Hello @dawnpereda @kdubois @techi @ujeeniack @lakelifelady @carnes @matttheschmatt @beemerw47 @jnewburn @suzyann @techi @danmlee @oceanfun1 @janneg and..." + (show)
@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

Jump to this post

Hello @lakelifelady

Thanks for that good report - I'm glad to hear that music is part of your life and that it helps!

Teresa

REPLY
Dawn Pereda | @dawnpereda | Nov 6, 2017
In reply to @hopeful33250 "Hello @dawnpereda @kdubois @techi @ujeeniack @lakelifelady @carnes @matttheschmatt @beemerw47 @jnewburn @suzyann @techi @danmlee @oceanfun1 @janneg and..." + (show)
@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

Jump to this post

Thank you for sharing this with all of us! I love that we are getting different suggestions and ideas as to what has helped to heal and cope with tbi's. The article about your friend is very inspiring and can speak to all of us. I have a HORRIBLE singing voice but if it would help to recover from my tbi, I'm willing to give it a try. I think I'll start out just singing in the car or the shower!

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Nov 6, 2017
In reply to @hopeful33250 "Hello @dawnpereda @kdubois @techi @ujeeniack @lakelifelady @carnes @matttheschmatt @beemerw47 @jnewburn @suzyann @techi @danmlee @oceanfun1 @janneg and..." + (show)
@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

Jump to this post

@dawnpereda

I can't carry a tune either, but that is not all that important. Yes, you can sing anywhere and it will help!

Teresa

REPLY
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