Lost & Found: What Brain Injury Survivors Want You to Know

roadkill

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#1
Lost & Found: What Brain Injury Survivors Want You to Know


I need a lot more rest than I used to. I’m not being lazy. I get physical fatigue as well as a “brain fatigue.” It is very difficult and tiring for my brain to think, process, and organize. Fatigue makes it even harder to think.
My stamina fluctuates, even though I may look good or “all better” on the outside. Cognition is a fragile function for a brain injury survivor. Some days are better than others. Pushing too hard usually leads to setbacks, sometimes to illness.
Brain injury rehabilitation takes a very long time; it is usually measured in years. It continues long after formal rehabilitation has ended. Please resist expecting me to be who I was, even though I look better.
I am not being difficult if I resist social situations. Crowds, confusion, and loud sounds quickly overload my brain, it doesn’t filter sounds as well as it used to. Limiting my exposure is a coping strategy, not a behavioral problem.
If there is more than one person talking, I may seem uninterested in the conversation. That is because I have trouble following all the different “lines” of discussion. It is exhausting to keep trying to piece it all together. I’m not dumb or rude; my brain is getting overloaded!
If we are talking and I tell you that I need to stop, I need to stop NOW! And it is not because I’m avoiding the subject, it’s just that I need time to process our discussion and “take a break” from all the thinking. Later I will be able to rejoin the conversation and really be present for the subject and for you.
Try to notice the circumstances if a behavior problem arises. “Behavior problems” are often an indication of my inability to cope with a specific situation and not a mental health issue. I may be frustrated, in pain, overtired or there may be too much confusion or noise for my brain to filter.
Patience is the best gift you can give me. It allows me to work deliberately and at my own pace, allowing me to rebuild pathways in my brain. Rushing and multi-tasking inhibit cognition.
Please listen to me with patience. Try not to interrupt. Allow me to find my words and follow my thoughts. It will help me rebuild my language skills.
Please have patience with my memory. Know that not remembering does not mean that I don’t care.
Please don’t be condescending or talk to me like I am a child. I’m not stupid, my brain is injured and it doesn’t work as well as it used to. Try to think of me as if my brain were in a cast.
If I seem “rigid,” needing to do tasks the same way all the time; it is because I am retraining my brain. It’s like learning main roads before you can learn the shortcuts. Repeating tasks in the same sequence is a rehabilitation strategy.
If I seem “stuck,” my brain may be stuck in the processing of information. Coaching me, suggesting other options or asking what you can do to help may help me figure it out. Taking over and doing it for me will not be constructive and it will make me feel inadequate. (It may also be an indication that I need to take a break.)
You may not be able to help me do something if helping requires me to frequently interrupt what I am doing to give you directives. I work best on my own, one step at a time and at my own pace.
If I repeat actions, like checking to see if the doors are locked or the stove is turned off, it may seem like I have OCD — obsessive-compulsive disorder — but I may not. It may be that I am having trouble registering what I am doing in my brain. Repetitions enhance memory. (It can also be a cue that I need to stop and rest.)
If I seem sensitive, it could be emotional liability as a result of the injury or it may be a reflection of the extraordinary effort it takes to do things now. Tasks that used to feel “automatic” and take minimal effort, now take much longer, require the implementation of numerous strategies and are huge accomplishments for me.
We need cheerleaders now, as we start over, just like children do when they are growing up. Please help me and encourage all efforts. Please don’t be negative or critical. I am doing the best I can.
Don’t confuse Hope for Denial. We are learning more and more about the amazing brain and there are remarkable stories about healing in the news every day. No one can know for certain what our potential is. We need Hope to be able to employ the many, many coping mechanisms, accommodations and strategies needed to navigate our new lives. Everything single thing in our lives is extraordinarily difficult for us now. It would be easy to give up without Hope.
 

Geoff_the_Beard

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#2
I believe I do understand your situation. It is thought that I had a minor stroke in 1998. There was a fall involved, but it is not clear whether a brain haemerrhage caused the fall or the fall caused the brain haemorrhage. I was fortunate to be transferred to a specialist brain hospital (The Atkinson Morely in southwest London) where they performed surgery. I completely lost the ability to speak. When I managed through sign language to tell the nurses I wanted my wallet (so I could pay for a newspaper), they wanted me to sign a form. I understood the concept of a signature, but had no idea what mine should look like, so had to make an X. Although I understood everything said to me (I think everyone was using simple words), replying was almost impossible.

I reagained basic speech within a matter of days, but needed to attend weekly speech and language therapy classes for several months before I could find words fluently. Frequently I knew the WAS a word that expressed my thinking, but had no recollection what that word might even be like. I was lucky - it was only a minor problem, and not much more than a year later people told me I had made a "complete" recovery, but it was a lot longer before I felt that way myself. Now, I just blame senility every time I struggle to find the right word!
 

roadkill

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#3
thanks Geoff for taking the time to read this..and for your reply...this was in an email from my mental health worker
and i know i will never be 100%...and this will help those that have never suffered a TBI (Traumatic Brain Injury ) to understand why those that had one
appear fine on the outside but struggle with so much on the inside..people with TBI also have an increase chance of becoming depressed and only adds to what we have to go through just to get through the day...a TBI changes who we were
we have such a hard time to help those around us to understand what is going on inside because we dont understand it ourselves
my physical rehab has ended as of december 2015...but my mental rehab will continue because on top of my TBI..i am dealing with depression

i just hope that this will in some small way explain what i can't
 

Sexylady007

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#4
Thank you for sharing Bro so that we all can understand what you deal with everyday...God Bless you
 

roadkill

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#5
[QUOTE="Sexylady007, post: 4855872]Thank you for sharing Bro so that we all can understand what you deal with everyday...God Bless you
[/QUOTE]
thank you sis...i just want to get people to understand what i cant explain in my own words
it is just not myself but all those that have had a TBI

 

squirt

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#6
I rather think you're worth any extra effort, but really, being around you is as easy as being me!
 

roadkill

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#7
[QUOTE="squirt, post: 4855888]I rather think you're worth any extra effort, but really, being around you is as easy as being me!
[/QUOTE]
you got me blushing now...lol
you make talking to you as easy as breathing...you always have
 

Goodgrief

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#9
Brain injury comes in different ways and forms. My mother had a stroke. She was lucid and her speech was clear. But in some ways things weren't quite right. She had lost her vision and hearing, as well as her mobility on the left side. What irritated her and me was that nurses and other patients thought she had lost her mind and insisted that she should stay under supervision for the rest of her life in a facility. That didn't go too well with her.

After several months of so-called rehab, she went back to her house, cooked her meals and survived quite well with a bit of help for the house-cleaning.

I must say that you made a remarkable recovery, RK! I understand that your battle is far from over, but you obviously are a strong character. Wishing you all the best of luck and a long happy life ahead.
 

roadkill

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[QUOTE="Goodgrief, post: 4856011]Brain injury comes in different ways and forms. My mother had a stroke. She was lucid and her speech was clear. But in some ways things weren't quite right. She had lost her vision and hearing, as well as her mobility on the left side. What irritated her and me was that nurses and other patients thought she had lost her mind and insisted that she should stay under supervision for the rest of her life in a facility. That didn't go too well with her.

After several months of so-called rehab, she went back to her house, cooked her meals and survived quite well with a bit of help for the house-cleaning.

I must say that you made a remarkable recovery, RK! I understand that your battle is far from over, but you obviously are a strong character. Wishing you all the best of luck and a long happy life ahead.
[/QUOTE]
thanks
 

roadkill

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#12
[QUOTE="likeaneagle, post: 4856021]You are not alone in this world...........[/QUOTE]
no i am not...there are many people with TBI..and this was emailed to me by my mental health worker when i was trying to explain what i did not understand myself...it helped my family to know what the struggles are and why i do things the way i do them...thanks LAE
 

Goodgrief

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#14
It hit me today. My body isn't responding as well as it used to. Aches and pains, but somehow I manage. BUT! If my brain went awry, I don't know how I would cope. I'm a puzzle solver. I start my day with several crosswords and a few cryptograms. The brain is awake, hopefully, the body will follow. Sometimes it works, sometimes it doesn't. Gosh! What I would give to turn back the clock 20 years ago!

But you, RK, fought back with determination. You are winning! Bravo!
 
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#19
The "new" version of you may be struggling to explain what's going on in your head when you don't even understand yourself....... ... and even though you'll never completely be your "old" self again.....as long as you don't quit you're one step closer than you were yesterday.
 
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roadkill

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#20
[QUOTE="squirt, post: 4856527]


[/QUOTE]
thanks squirt for the encouraging words