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!

@dawnpereda

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!

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I wonder if any of you have tried LLT, with red light.

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Hi @dawnpereda
I was thinking about you today and wondering how you are doing. It’s a cold day with fresh fallen snow where I am today. I’m thankful for the brilliant sunshine and my wool sweater. How are you?

Liked by treyaj

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Thank you for thinking of me. I continue to live the dream of a person with a brain injury (my snarky reply for the day). Actually, I’m struggling a great deal with PTSD issues and its really affecting my family life. I’ve been looking at treatment plans but finding it to be a daunting task. The intensive therapy program that I think would suit me best costs about $5,000 and is located 10 hours from my home. I feel I need to do something because my children and husband describe me as a very angry person. Not how I want to be remembered, but trying to figure out how I can pay for this as my health insurance would not cover it. I live right in Rochester, home of the Mayo Clinic, but find treatment options horribly limited here because I’m not a vet or a youth with a sports injury. Would anyone have any advice or recommendations?

Liked by EES1

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@dawnpereda

Thank you for thinking of me. I continue to live the dream of a person with a brain injury (my snarky reply for the day). Actually, I’m struggling a great deal with PTSD issues and its really affecting my family life. I’ve been looking at treatment plans but finding it to be a daunting task. The intensive therapy program that I think would suit me best costs about $5,000 and is located 10 hours from my home. I feel I need to do something because my children and husband describe me as a very angry person. Not how I want to be remembered, but trying to figure out how I can pay for this as my health insurance would not cover it. I live right in Rochester, home of the Mayo Clinic, but find treatment options horribly limited here because I’m not a vet or a youth with a sports injury. Would anyone have any advice or recommendations?

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i CAN ONLY THINK OF LLT,RED LIGHT LASER THERAPY AS A POSSIBILITY.

Liked by dawnpereda

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Hullo Dawn

I totally empathise with your experience. I had a similar experience my self and my symptoms were loss of short term memory, loss of balance, eyes that found it a major effort to open… and muddled speech. My brain often felt very foggy. I also had to give up my career.

What I found – 14 years after the RTA when I was knocked back to the kerb and the base of my skull and top of my neck hit the edge of the kerb like a “karate chop” – was Hyperbaric Oxygen which is oxygen under pressure. It was developed as a therapy for deep sea divers and after many years has helped people with M.S and head injuries. Perhaps the Mayo Clinic will have some experience of this therapy.

What is helping me – is writing it all down for my family – so that they understand exactly how I felt straight after the car accident and how I have felt through the years.

One set of symptoms that I have not read about anywhere – is that when I was floating between being unconscious and “coming to” was that I had absolutely no pain or sensation of my body even though I also had a broken leg and shoulder-blade . I also had no active movement so could not open my eyes BUT the strange symptom that I also had was that I COULD HEAR now and again! I heard people talking and heard….. “Someone get her a blanket she must be freezing cold ” and ” Don’t lift her like that she might have a broken neck”…. which I did have though luckily only a hairline fracture. I heard someone saying ” You’ve been knocked down by a car ” but was not taking this information into my brain as I thought I was still in my bed!!! The only feeling I had was of the soft bed I was lying in!!!

I am looking into nutritional support for my brain . it is much easier to deal with a broken arm or leg!!
Over time it is amazing how some parts of the injured brain heal… otherwise I could not write this post as I now find learning new skills very difficult.

I HOPE THIS HELPS

cLAIRE

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@kobeelya

Hullo Dawn

I totally empathise with your experience. I had a similar experience my self and my symptoms were loss of short term memory, loss of balance, eyes that found it a major effort to open… and muddled speech. My brain often felt very foggy. I also had to give up my career.

What I found – 14 years after the RTA when I was knocked back to the kerb and the base of my skull and top of my neck hit the edge of the kerb like a “karate chop” – was Hyperbaric Oxygen which is oxygen under pressure. It was developed as a therapy for deep sea divers and after many years has helped people with M.S and head injuries. Perhaps the Mayo Clinic will have some experience of this therapy.

What is helping me – is writing it all down for my family – so that they understand exactly how I felt straight after the car accident and how I have felt through the years.

One set of symptoms that I have not read about anywhere – is that when I was floating between being unconscious and “coming to” was that I had absolutely no pain or sensation of my body even though I also had a broken leg and shoulder-blade . I also had no active movement so could not open my eyes BUT the strange symptom that I also had was that I COULD HEAR now and again! I heard people talking and heard….. “Someone get her a blanket she must be freezing cold ” and ” Don’t lift her like that she might have a broken neck”…. which I did have though luckily only a hairline fracture. I heard someone saying ” You’ve been knocked down by a car ” but was not taking this information into my brain as I thought I was still in my bed!!! The only feeling I had was of the soft bed I was lying in!!!

I am looking into nutritional support for my brain . it is much easier to deal with a broken arm or leg!!
Over time it is amazing how some parts of the injured brain heal… otherwise I could not write this post as I now find learning new skills very difficult.

I HOPE THIS HELPS

cLAIRE

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Every time I read about the experiences of others who “know and understand” TBI gives me courage and validation.. I still need to find a way to help myself walk wiwthout balance problems, tightness and pain in my shoulders, a foggy brain, dizziness and fatigue as a start. Add to that the gap that never has healed together in my broken neck and the resulting muscle fatigue in my shoulders and arms when sitting in a chair holding music or a book brings on much pain and just writing all of this here ( which is therapeutic in itself) brings on tearfulness and sometimes even a flash back of horror of the accident. So, keep writing dear friends….I will keep trying myself.

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@kobeelya

Hullo Dawn

I totally empathise with your experience. I had a similar experience my self and my symptoms were loss of short term memory, loss of balance, eyes that found it a major effort to open… and muddled speech. My brain often felt very foggy. I also had to give up my career.

What I found – 14 years after the RTA when I was knocked back to the kerb and the base of my skull and top of my neck hit the edge of the kerb like a “karate chop” – was Hyperbaric Oxygen which is oxygen under pressure. It was developed as a therapy for deep sea divers and after many years has helped people with M.S and head injuries. Perhaps the Mayo Clinic will have some experience of this therapy.

What is helping me – is writing it all down for my family – so that they understand exactly how I felt straight after the car accident and how I have felt through the years.

One set of symptoms that I have not read about anywhere – is that when I was floating between being unconscious and “coming to” was that I had absolutely no pain or sensation of my body even though I also had a broken leg and shoulder-blade . I also had no active movement so could not open my eyes BUT the strange symptom that I also had was that I COULD HEAR now and again! I heard people talking and heard….. “Someone get her a blanket she must be freezing cold ” and ” Don’t lift her like that she might have a broken neck”…. which I did have though luckily only a hairline fracture. I heard someone saying ” You’ve been knocked down by a car ” but was not taking this information into my brain as I thought I was still in my bed!!! The only feeling I had was of the soft bed I was lying in!!!

I am looking into nutritional support for my brain . it is much easier to deal with a broken arm or leg!!
Over time it is amazing how some parts of the injured brain heal… otherwise I could not write this post as I now find learning new skills very difficult.

I HOPE THIS HELPS

cLAIRE

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1. water therapy:pools

2. LLT: red light therapy for TBI>

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@kobeelya

Hullo Dawn

I totally empathise with your experience. I had a similar experience my self and my symptoms were loss of short term memory, loss of balance, eyes that found it a major effort to open… and muddled speech. My brain often felt very foggy. I also had to give up my career.

What I found – 14 years after the RTA when I was knocked back to the kerb and the base of my skull and top of my neck hit the edge of the kerb like a “karate chop” – was Hyperbaric Oxygen which is oxygen under pressure. It was developed as a therapy for deep sea divers and after many years has helped people with M.S and head injuries. Perhaps the Mayo Clinic will have some experience of this therapy.

What is helping me – is writing it all down for my family – so that they understand exactly how I felt straight after the car accident and how I have felt through the years.

One set of symptoms that I have not read about anywhere – is that when I was floating between being unconscious and “coming to” was that I had absolutely no pain or sensation of my body even though I also had a broken leg and shoulder-blade . I also had no active movement so could not open my eyes BUT the strange symptom that I also had was that I COULD HEAR now and again! I heard people talking and heard….. “Someone get her a blanket she must be freezing cold ” and ” Don’t lift her like that she might have a broken neck”…. which I did have though luckily only a hairline fracture. I heard someone saying ” You’ve been knocked down by a car ” but was not taking this information into my brain as I thought I was still in my bed!!! The only feeling I had was of the soft bed I was lying in!!!

I am looking into nutritional support for my brain . it is much easier to deal with a broken arm or leg!!
Over time it is amazing how some parts of the injured brain heal… otherwise I could not write this post as I now find learning new skills very difficult.

I HOPE THIS HELPS

cLAIRE

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Dear Lakelifelady what a lovely healing name.

I feel for you and the symptoms you are having.

When I was knocked down I was already interested in alternative therapies and a lady who lived nearby suggested I trey some homeopathic remedies for the shock, and then suggested I read through the Homeopathic ” bible ” reading the description of the remedy and considering if any part of the description of the remedy described how I felt or reacted in day to day happenings or people or the weather… or anything and I ploughed thro the book very slowly as my energy was very poor… then I decided it was definately interesting so I found a very experienced homeopath and went to have a two hour interview…. and he prescribed a few remedies.

So my first suggestion if you think it is of any interest is to find a well known and highly respected homeopath near where you live.

I agree with ujeeniack warm water therapy and red light therapy ( is this Far Infrared ? )

Gentle supportive therapies

and collecting a rainbow of coloured “things ” pottery, paintings, stones, cryatals painting sof blue seas and coloured fruit colour also helps

and deep gentle breathing and visualising a healthy “you” walking in the colours… especially the blue water!

Be well

Kobeelya

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@kobeelya

Hullo Dawn

I totally empathise with your experience. I had a similar experience my self and my symptoms were loss of short term memory, loss of balance, eyes that found it a major effort to open… and muddled speech. My brain often felt very foggy. I also had to give up my career.

What I found – 14 years after the RTA when I was knocked back to the kerb and the base of my skull and top of my neck hit the edge of the kerb like a “karate chop” – was Hyperbaric Oxygen which is oxygen under pressure. It was developed as a therapy for deep sea divers and after many years has helped people with M.S and head injuries. Perhaps the Mayo Clinic will have some experience of this therapy.

What is helping me – is writing it all down for my family – so that they understand exactly how I felt straight after the car accident and how I have felt through the years.

One set of symptoms that I have not read about anywhere – is that when I was floating between being unconscious and “coming to” was that I had absolutely no pain or sensation of my body even though I also had a broken leg and shoulder-blade . I also had no active movement so could not open my eyes BUT the strange symptom that I also had was that I COULD HEAR now and again! I heard people talking and heard….. “Someone get her a blanket she must be freezing cold ” and ” Don’t lift her like that she might have a broken neck”…. which I did have though luckily only a hairline fracture. I heard someone saying ” You’ve been knocked down by a car ” but was not taking this information into my brain as I thought I was still in my bed!!! The only feeling I had was of the soft bed I was lying in!!!

I am looking into nutritional support for my brain . it is much easier to deal with a broken arm or leg!!
Over time it is amazing how some parts of the injured brain heal… otherwise I could not write this post as I now find learning new skills very difficult.

I HOPE THIS HELPS

cLAIRE

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Kobeelya, Since I do water colors the part of visualizing the colors is wonderful. We live in a retirement community in the winter which has warm pools everywhere….I will look into your other ideas also. I good friend is now taking training in Rikki and other homeopathic venues and she has offered to help me as her training subject….which I am certain can do no harm. Thank you.

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Dear Take-Life-Lady

Good news – we never know what will help until we have an open mind and try it!

Amethyst crystals are thought to be very healing and when people say that crystals have no energy one has to remember that the starter motor uses a clear quartz crystal!

and just remembered the orange Carnelian is good for energy – I used to keep one in each pocket of my trousers and always remembered to take them out of my pockets before the trousers went into the washing machine…

I found Reiki really helpful and trained at the 1st Level – and then worked on my own energy centres.

I’ll be very interested to hear – when you find the right Homeopath – how Homeopathy helps too
I used to paint as well – single flowers…. a great therapy.
A friend suggested that I surround my energy field with roses then imagine all my negative energy and negative memories and pain floating out of the body and into the roses then blowing them up – gently – phoooooffff and away goes he energy you dont wish to hold any more Bye for now.

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@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

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Hi, thanks for sharing. I was in a head-on car collision 2 years ago, and I'm struggling to live a normal life. I broke so many bones we never even counted, and have undergone 9 surgeries in the last 2 years.I have rods and screws in my back and my life is full of pain from the various injuries. I walk, ride a stationary bike, and swim. I also struggle everyday with the thought of what I used to be like. I was a junior high school teacher and a marathon runner. Now I'm a disabled middle-aged woman. I also suffer from depression. Going to weddings is very difficult for me also. Riding in a car can be difficult, and I really limit freeway driving. Because of the chronic pain in my back my doctor has limited how much sitting I should do. It is comforting to hear that there are others that have such similar symptoms, and it makes me feel a little less crazy.

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@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

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Welcome to Connect, @cjackura. You certainly have found the right group. It is comforting to hear from others in similar situations as I'm sure @dawnpereda @lakelifelady @carnes and others will agree.

There's an insightful discussion in the neuropathy group about Acceptance (https://connect.mayoclinic.org/discussion/acceptance/). How does one get to the point of acceptance to new normal? That's a big question and perhaps even rhetorical.

While you're not running marathons, it must be helpful to be physically active. I can't imagine after such injuries and 9 surgeries that you're able to walk, ride and swim. Kudos to you for building and adapting your abilities to be physically active. I'd like to hear more about your journey to get to this point. What rehab did you do? What kept you going?

Liked by dawnpereda

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@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

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Hello Colleen, Carnes here. I find it not so easy to accept my not being able to find my words to express what I really mean. Me trying to teach now is frustrating. But I won’t give up, I’m going to continue to study and do what I can for others. Exercising I find difficult, but going in the water ti exercise I don’t feel the pain. So good to hear from you.

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@lakelifelady

Yes, the word thing. Sometimes an out of context word will pop out. I do a lot of posting on FB just to keep writing and thinking and replying. We live out on a lake so conversational opportunities are somewhat limited. I play Bananagram a word game much like Scrabble with a dictionary close by to help me. This game can be done alone, which I prefer because I have trouble keeping up with others.
You have family still at home which I envy a bit. I know how difficult that must be. When our three grown sons come back for lake life activities in summertime everyone knows that Grama cannot keep up. We also have adult grandkids now who step up.

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I’m a 72 year old woman who lives with my husband. He is only home in the evenings, I’m grateful for that. My traumatic brain injury happened in a car accident in 2015. My life has not been the same since. I work with others mainly on the telephone since I have trouble walking and getting around. I go to the Y to senior swim when I’m blessed with someone to take me. But I find all of what you said, certainly helps with memory. I get exhausted so easily, trouble staying asleep. I find it difficult to explain all the things wrong with me but pretty much all on this page, is me now. It is so helpful and kind to read about others going through what I never thought would be of me. What I do on the telephone takes a lot of working brain so it is hard but helps keep what still works and prayerfully progress. I’ve always disliked talking on the telephone, now I’m grateful for it. I over-react when in a car also, but I cannot help it. I find meditation, prayer, helping others gets me out of self; which makes a happier person. I study quite a bit but since the accident it’s more difficult to concentrate, pay attention, etc. I find myself reading the same thing over and over, it does get a little better. Thank you and everyone on this page for being there. Sharon.

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@carnes Thank you for your lovely post, Sharon!

I am glad that you shared your struggles as well as your coping skills after a TBI. Sometimes it is very easy to focus on the struggles and not realize how you can cope by being actively involved both physically and by helping others.

You have done a great job in keeping yourself active physically, mentally and socially. My thoughts and prayers go out to you today!

Will you share more in the future about your recovery process?

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