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!

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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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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@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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Can you tell me more about the intensive therapy program? Thanks

Liked by dawnpereda

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It will have been four yrs in May since the car accident in which I suffered two brain bleeds and now have a focus of encephalopathy in my frontal lobe. Lights, noises, traffic, crowds, stores, malls, multiple conversations, concentration, organization, sadness, loss and grief, PTSD, exaggerated startle responses and always present anxiety are some of the symptoms I still experience. Dizziness, tinnitus and balance included. I cope by walking outside, riding bike mostly on stationary bike for safety reasons, playing my piano and flutes, singing in choirs and reading, playing word brain games reading , and meditating. I like to laugh heartily. Sometimes I fail at doing anything at all. Sleep is often difficult. In other words, I struggle but just keep on trucking, knowing that my life has changed for good.

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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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Hello, @treyaj – just wanted to check in and see how you are doing? I know that the TBI symptoms you mentioned like intolerance of noise and large groups are similar to things that @lakelifelady has mentioned experiencing.

I also wanted you to get to meet @hopeful33250 and @dawn_giacabazi, who may be able to provide support. @hopeful33250 has some familiarity with speech word problems, as well.

How are things going with the memory problems and speech problems? Will you share more about what you are experiencing with your speech?

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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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Hello@treyaj

I am so sorry to hear about this life-changing accident that you were involved in. As you said, it is amazing how in a split second your life can change so dramatically. How long ago was your accident?

As I suffer from a neurological disorder, I know that it affects you all over. Have you been involved in any cognitive therapy programs. They are specially designed to meet the needs of people who have experienced a TBI? It would include occupational therapy, speech therapy, psychotherapy as well as physical therapy. All of these areas need to be addressed since all of these areas were affected by your accident. Just treating one of these areas is not enough.

I have had vocal cord surgery and do have problems with speech. Speech therapy is a great way to get support when you are having problems with speaking and/or swallowing.

I hope you begin to feel better as time goes on. Will you post again?

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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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@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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@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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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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@hopeful33250

Hello@treyaj

I am so sorry to hear about this life-changing accident that you were involved in. As you said, it is amazing how in a split second your life can change so dramatically. How long ago was your accident?

As I suffer from a neurological disorder, I know that it affects you all over. Have you been involved in any cognitive therapy programs. They are specially designed to meet the needs of people who have experienced a TBI? It would include occupational therapy, speech therapy, psychotherapy as well as physical therapy. All of these areas need to be addressed since all of these areas were affected by your accident. Just treating one of these areas is not enough.

I have had vocal cord surgery and do have problems with speech. Speech therapy is a great way to get support when you are having problems with speaking and/or swallowing.

I hope you begin to feel better as time goes on. Will you post again?

Jump to this post

Thank you for your response. It has been 3 years since the injury. I was alone, in Fl but I live in California. Having no support systems in Fl and not knowing the area or anyone, has made my losses very difficult. I have had a lot of PT, and 2 injury surgeries, but I continue to need CBT and wonder if speech therapy would help. My speech issues are very embarassing to me, I used to be so articulate and verbal. I am determined and resilient, getting to know this new me has been very challenging. But I keep going forward.

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@treyaj

Thank you for your response. It has been 3 years since the injury. I was alone, in Fl but I live in California. Having no support systems in Fl and not knowing the area or anyone, has made my losses very difficult. I have had a lot of PT, and 2 injury surgeries, but I continue to need CBT and wonder if speech therapy would help. My speech issues are very embarassing to me, I used to be so articulate and verbal. I am determined and resilient, getting to know this new me has been very challenging. But I keep going forward.

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Hello @treyaj

I believe that speech therapy would be most helpful to you and I encourage you to seek out a speech therapist with experience in your area of a TBI. I am glad to hear that singing helps you as it has with me as well.

Here is a link to an article about the effect of music on brain injured individuals, https://www.brainline.org/article/how-music-helps-heal-injured-brain

Here is another article about how singing is used to help people with brain injuries caused by strokes, https://www.npr.org/sections/health-shots/2011/12/26/144152193/singing-therapy-helps-stroke-patients-speak-again

This interesting video was shared by one of our mentors, Martin, @predictable.

Here Is What Music Does To Your Body

Here is what music does to your body.

Posted by Hashem Al-Ghaili on Thursday, March 1, 2018

I would also suggest that you subscribe to a free subscription to Brain&Life, https://www.brainandlife.org/?originalURL=https://journals.lww.com/neurologynow/pages/articleviewer.aspx&year=2017&issue=13040&article=00009&type=FullText
There are many good articles there about the brain and healing.

Here is an example of singing in a medical environment. I think you will enjoy it😊

https://connect.mayoclinic.org/discussion/what-music-does-to-our-body/?utm_campaign=search

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@hopeful33250

Hello @treyaj

I believe that speech therapy would be most helpful to you and I encourage you to seek out a speech therapist with experience in your area of a TBI. I am glad to hear that singing helps you as it has with me as well.

Here is a link to an article about the effect of music on brain injured individuals, https://www.brainline.org/article/how-music-helps-heal-injured-brain

Here is another article about how singing is used to help people with brain injuries caused by strokes, https://www.npr.org/sections/health-shots/2011/12/26/144152193/singing-therapy-helps-stroke-patients-speak-again

This interesting video was shared by one of our mentors, Martin, @predictable.

Here Is What Music Does To Your Body

Here is what music does to your body.

Posted by Hashem Al-Ghaili on Thursday, March 1, 2018

I would also suggest that you subscribe to a free subscription to Brain&Life, https://www.brainandlife.org/?originalURL=https://journals.lww.com/neurologynow/pages/articleviewer.aspx&year=2017&issue=13040&article=00009&type=FullText
There are many good articles there about the brain and healing.

Here is an example of singing in a medical environment. I think you will enjoy it😊

https://connect.mayoclinic.org/discussion/what-music-does-to-our-body/?utm_campaign=search

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Thank you very much for these resources. I feel renewed hope. Hope matters!

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When I first started back to playing and singing I noticed how hard it was to properly focus my eyes to follow the notes. My concentration would lapse and I would fall behind. As I kept on, over time things got better. Still, getting the words in to a fast moving song requires practice and concentration. Concentrating intently is very tiring. Rehearsals and painting sessions often exhaust me. Following media or reading posts on line cause dizziness and nausea for me and must take on line time in short bits or I literally lurch and weave away from my device. Reading newspapers brings on same ….I think because of moving my eyes up and down and back and forth on the page. Books do not cause dizziness most often because one's head stays stable,

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@treyaj

Thank you very much for these resources. I feel renewed hope. Hope matters!

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Yes, hope is very important to recovery, @treyaj
Will you post again and update me on how you are doing?

Liked by dawnpereda

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Hello @lakelifelady and @treyaj

As both have found value in music as a healing art, I thought I would direct you to some Connect discussions on music and art. You will find like-minded Members in these groups,

https://connect.mayoclinic.org/discussion/what-music-does-to-our-body/?utm_campaign=search

https://connect.mayoclinic.org/discussion/music-helps-me/?utm_campaign=search

https://connect.mayoclinic.org/discussion/art-for-healing/?utm_campaign=search

Please feel free to share your own experiences in these groups!

Liked by dawnpereda

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@lakelifelady

When I first started back to playing and singing I noticed how hard it was to properly focus my eyes to follow the notes. My concentration would lapse and I would fall behind. As I kept on, over time things got better. Still, getting the words in to a fast moving song requires practice and concentration. Concentrating intently is very tiring. Rehearsals and painting sessions often exhaust me. Following media or reading posts on line cause dizziness and nausea for me and must take on line time in short bits or I literally lurch and weave away from my device. Reading newspapers brings on same ….I think because of moving my eyes up and down and back and forth on the page. Books do not cause dizziness most often because one's head stays stable,

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I have had this same experience, @lakelifelady.

No problem when I read books, but when I'm working with numbers and glancing back and forth between a checkbook register and a computer screen inputting numbers, the dizziness begins followed by the nausea. I have to take frequent breaks in order to clear my head.

Vestibular therapy can be really good for these symptoms. I probably need to call my neurologist for a referral.

Liked by dawnpereda

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