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!

@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
@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
@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
@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
@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

Hi Dawn,
Thank you for sharing with all of us your discussion session. As this give me an idea how strong you are and what type of life are you looking for with your family and your kids. God bless! If I can put here some helpful words of my own thinking but not as a prescription! As you said in your paragraph ( I am a ” new’ me and I never would have imagined this journey for myself). That give me the picture of how it is hard for the patient to face this alone, but at the same it may become easier if the patient asks him/her-self two questions for self : 1. Her/his awareness and knowledge of the type of the injury by her/his primary doctor. And with the help of the doctor try to collect the information or practices that is needed to be done to improve the situation. 2.Put with the doctor a progress list that will help to overcome the disturbances, because as we know the brain is able to rebuild self but slowly over a period of time depending on the trauma. The progress list is working as a reminder that you are doing better, and it helps to rebuild the trust of self.
Dear wish you getting well soon!

REPLY
@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

What you said about music l believe 100% because as l listen to Christian music l am praising God for all the victories he brought me through and sometimes when you have to remind yourself of his greatness it brings you up and fills your cup and helps you to keep on trusting and believing. Now l know that’s true for me. And that’s what kept me through the walk l have to go through. Yes l certainly believe that l and also writing has helped me with memory.

REPLY
@lakelifelady

Dawn, I am 73 yr old woman. II listened to your pod cast and have experienced similar difficulties after a car accident in 2015. My life too, has not been the same since the accident where I had two brain bleeds most likely made worse by my taking a blood thinner after having an MI and stent placement five months before.
It took a long time to recover because I also broke my neck, six ribs and had compression fractures down my spine.
At first I had anxiety attacks daily which soon became PTSD. Being immobile in a turtle shell cast with a neck brace made my emotional reactivity worse. I had neurologists do cognitive testing and my Master’s Degree in Counseling Psychology where I had led a busy professional life was not so evident. I still have trouble with complex life tasks like filling out forms, figuring out the steps to take to finish a task and I refuse to read through insurance or tax documents because it is just overwhelming and I am likely to cry.
Loud noise, a room full of talking people and bright lights give me trouble and I am likely to get dizzy and light headed. Stage plays overwhelm and events like weddings, funerals are so hard to attend and I am exhausted after.
Seeing a car accident sends me into a high anxiety state and I am likely to cry uncontrollably. Sometimes something is mentioned that sends me into a flashback state of sobbing and shaking. Nights can be full of waking up with high anxiety.
Riding in a car is nerve wracking because I over react to situations. I get car sick now and am dizzy when driving or riding.
When going for a walk I sometimes lurch to the right or feel like I have a bobble head.
I have to write everything down or I forget. You know the routine. Yesterday, I left my purse in a shopping cart. Luckily for me an honest gentleman turned it in.
There is more but that is enough for now but I need to tell you my coping skills.
I walk daily and use a stationary bike daily. I listen to soft music and do visualization of happy, healthy, holy. Grateful, gracious and grounded.
I sing in a chorus, play the piano and flute and read. I could not finish a book at first but now I am able. I follow athletic events. Go to church and sing in the choir and have taken up water color painting. I get exhausted easily and must rest often.
Lakelifelady

Jump to this post

I also remember when l first came home after my TH I l cried because l didn’t know my house and that l had children. Then one day my therapist took me to the grocery store to see what l remembered. I cried because there were people around and it was to overwhelming. I didn’t know how to do house work or cook. I also couldn’t take hearing loud noise and too many people talking frightened.me. Then one day l was told l was strangling my daughter and l really didn’t know what l did then l was sent to the mental hospital. And l can remember only one time being there. I guess it was the drugs l was given. Then l was discharged. Then everything after while seemed ok. I was reading doing math and my speech therapist helped me to do these things. Then once again something happened again l fell on an antique table and hit my head. I wanted to go home because when l hit my head we were to fly back home. My mother and l did and l was told l did something else l am not sure. I was told when we got off the plane they took me straight to the hospital and l kept calling my therapist name and she came and Then l was transferred to another mental hospital. I came back out and l was put on stronger antidepressants from 1997- 2014. I had another attack with my brain injury. Viral encephalitis first and then autoimmune encephalitis and all the things l was going through were symptoms of autoimmune encephalitis disease and at that time and still today doctors don’t know about it and they think it’s a mental problem when it’s actually all the signs of autoimmune encephalitis disease. Then l had a 4hr test for memory and then a PET for dementia and they all came back normal. So l prayed Lord give me my memory back. I listened to music and watched wheel of fortune. When l read the bible or hear the preacher speak l couldn’t comprehend or remember as soon as l got out the church. Now l can read and understand what l hear and not frightened of my surroundings but now in the times we are living in we have to be aware so that is normal. Now l haven’t been driving for a year because they didn’t know what was going on with me so l have to tell doctors go to about my illness and the symptoms but l am doing great and they can’t believe it but God is not surprised. And just recently l read about 2 people who went through the same thing and were treated the same way and also placed in mental hospitals. So it takes time and lots of prayer. And don’t be hard on yourself because all of this is normal and it will get better.

REPLY
@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

As my pastor just said this week everybody has a voice to sing but nobody knows how good they are until they see who’s listening.

REPLY
@lakelifelady

Dawn, I am 73 yr old woman. II listened to your pod cast and have experienced similar difficulties after a car accident in 2015. My life too, has not been the same since the accident where I had two brain bleeds most likely made worse by my taking a blood thinner after having an MI and stent placement five months before.
It took a long time to recover because I also broke my neck, six ribs and had compression fractures down my spine.
At first I had anxiety attacks daily which soon became PTSD. Being immobile in a turtle shell cast with a neck brace made my emotional reactivity worse. I had neurologists do cognitive testing and my Master’s Degree in Counseling Psychology where I had led a busy professional life was not so evident. I still have trouble with complex life tasks like filling out forms, figuring out the steps to take to finish a task and I refuse to read through insurance or tax documents because it is just overwhelming and I am likely to cry.
Loud noise, a room full of talking people and bright lights give me trouble and I am likely to get dizzy and light headed. Stage plays overwhelm and events like weddings, funerals are so hard to attend and I am exhausted after.
Seeing a car accident sends me into a high anxiety state and I am likely to cry uncontrollably. Sometimes something is mentioned that sends me into a flashback state of sobbing and shaking. Nights can be full of waking up with high anxiety.
Riding in a car is nerve wracking because I over react to situations. I get car sick now and am dizzy when driving or riding.
When going for a walk I sometimes lurch to the right or feel like I have a bobble head.
I have to write everything down or I forget. You know the routine. Yesterday, I left my purse in a shopping cart. Luckily for me an honest gentleman turned it in.
There is more but that is enough for now but I need to tell you my coping skills.
I walk daily and use a stationary bike daily. I listen to soft music and do visualization of happy, healthy, holy. Grateful, gracious and grounded.
I sing in a chorus, play the piano and flute and read. I could not finish a book at first but now I am able. I follow athletic events. Go to church and sing in the choir and have taken up water color painting. I get exhausted easily and must rest often.
Lakelifelady

Jump to this post

Hello Lisa, @techi

What a remarkable story! I appreciate your sharing this information on Mayo Connect.

Teresa

Liked by dawnpereda

REPLY
@lakelifelady

Dawn, I am 73 yr old woman. II listened to your pod cast and have experienced similar difficulties after a car accident in 2015. My life too, has not been the same since the accident where I had two brain bleeds most likely made worse by my taking a blood thinner after having an MI and stent placement five months before.
It took a long time to recover because I also broke my neck, six ribs and had compression fractures down my spine.
At first I had anxiety attacks daily which soon became PTSD. Being immobile in a turtle shell cast with a neck brace made my emotional reactivity worse. I had neurologists do cognitive testing and my Master’s Degree in Counseling Psychology where I had led a busy professional life was not so evident. I still have trouble with complex life tasks like filling out forms, figuring out the steps to take to finish a task and I refuse to read through insurance or tax documents because it is just overwhelming and I am likely to cry.
Loud noise, a room full of talking people and bright lights give me trouble and I am likely to get dizzy and light headed. Stage plays overwhelm and events like weddings, funerals are so hard to attend and I am exhausted after.
Seeing a car accident sends me into a high anxiety state and I am likely to cry uncontrollably. Sometimes something is mentioned that sends me into a flashback state of sobbing and shaking. Nights can be full of waking up with high anxiety.
Riding in a car is nerve wracking because I over react to situations. I get car sick now and am dizzy when driving or riding.
When going for a walk I sometimes lurch to the right or feel like I have a bobble head.
I have to write everything down or I forget. You know the routine. Yesterday, I left my purse in a shopping cart. Luckily for me an honest gentleman turned it in.
There is more but that is enough for now but I need to tell you my coping skills.
I walk daily and use a stationary bike daily. I listen to soft music and do visualization of happy, healthy, holy. Grateful, gracious and grounded.
I sing in a chorus, play the piano and flute and read. I could not finish a book at first but now I am able. I follow athletic events. Go to church and sing in the choir and have taken up water color painting. I get exhausted easily and must rest often.
Lakelifelady

Jump to this post

Lisa,
Thank you for sharing your story! I am often amazed at what a person can go through because of a brain injury. As an adult, I feel that, our symptoms are viewed differently or may not be seen for what they really are. I’m so glad that you stayed strong and got through some very dark times. Love and support from family can be so very helpful. Belief in a higher power also carries me on a daily basis. I spend a good portion of my day “talking” to God. I try to be thankful for what I have and to not spend too much time grieving for what I have lost. Some days that’s easier than others. The last sentence of your post is so encouraging!

REPLY

Thanks for checking us out and reading the posts! I appreciate your input. I can only speak for myself, but I’m sure others have also, and can say that I have spent a lot of time talking with my doctors. The hard part is that we all heal differently and no one is guaranteed a predictable outcome. I journal everyday and this has helped me to see what progress I have made. I started journaling as a way to “remember” my life. I have seen some healing and progress but am still saddened by how affected by my tbi I remain. Some days are better than others. If I write things down it helps me to remember and keeps me on track during my day. I am the poster child for sticky notes, calendars, and journals!! Thanks again for sharing your thoughts!

REPLY

@dawnpereda

I think that journaling is a great way to deal with health problems! It helps us express our feelings about a disorder or problem and it also helps us to see patterns to symptoms, etc. Sometimes finding a trigger to a problem can be so important.

Teresa

REPLY
@hopeful33250

@dawnpereda

I think that journaling is a great way to deal with health problems! It helps us express our feelings about a disorder or problem and it also helps us to see patterns to symptoms, etc. Sometimes finding a trigger to a problem can be so important.

Teresa

Jump to this post

I agree. The hardest part for me has been learning to take the time to do it every day. Most days I get it done. I absolutely make sure to journal when I have had a big life event. We just went on a short vacation to South Dakota and I detailed it every night in my journal. My family now looks at it too when recounting what a great time we had! Taking that into account, I guess my tbi can actually be helpful even to others!!

REPLY

Absolutely, @dawnpereda

Thanks for letting us know about the extended benefits of journaling!

Teresa

Liked by dawnpereda

REPLY
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