Adult Life after a Traumatic Brain Injury

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

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!

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.

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

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.

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.

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!

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!

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.