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Questions about brain injury--and response

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  • #41
    So many wonderful posts here, and I appreciate those who have openly shared their challenges.

    What's remarkable to me is how the brain can continue to heal, long, long after medical professionals say they won't. A friend survived a brain-stem stroke, leaving him with "locked-in syndrome." The doctors said at the six month mark, he would have whatever function he was going to regain. He had nearly regained nearly nothing at six months.

    But thanks to his own determination, and that of his wife, he continued to gain function for more than 10 years.

    Courney and her family likely face a long, long road. I wish them the best.

    Comment


    • #42
      Originally posted by rodawn View Post

      I, to this day, sometimes struggle in verbal communication. I struggle with name recall and word recall and sometimes my memory fails me on short term events, but my long-term memory is, as my husband puts it, like a steel trap. Once something gets transferred to long-term memory, I can relate whole conversations absolutely verbatim. But it is surprising what does and does not get put into long-term memory. If something gets stuck in short term memory, well, it's in jeopardy.

      and I will have to stop, take a breath, repeat what I wanted to say. My closest friends all know and are aware.
      I have a few of the same issues. Took an easy light fall from Boomer when I was teaching him to jump (back in 2004) I was wearing a helmet but the trauma came from severe whip lash.

      I recovered quickly but felt the after effect head aches for 6 months to a year.

      Since then I, too, have issues with words. I stutter when I speak on occasion. I do not read well.
      Welbutrin actually helps with the stuttering.

      I'll often be in the middle of a conversation and just lose my words. I just stand there looking stupid and have to say, "Oops brain fart, new subject", because I literally cannot continue my sentence without using a very easy remedial word that just won't come to me. It’s quite embarrassing when talking to my employer or other researchers.
      With friends I'll just continue the sentence by saying, "blah blah blah blah. You know what I mean?"

      I was reading an email a few weeks ago that included the word: rendezvous.
      I asked my friend, “what the h*ll is a ren-dez-vous.?”
      Of course she started cracking up and shouted Rhon De Vu!
      “Oh, may bad, haha, NOT!”

      My long term memory is amazing; my short term memory is little to no good.

      I remember a time last year when my PhD asked me,
      "Kristen, remember when you called that IT guy and he came out to fix my lap top?"
      Kristen: Nope. When was that?
      PhD: "a few months ago, it was a huge ordeal, you don't remember?"
      Kristen: "hmmm, wow you have a laptop?"
      PhD: "it must be nice not to remember anything...that way when you have a bad day you forget about it."

      And he was totally serious and genuine with that last comment.

      I was lucky that this is the only issue that shows up. And actually, I came out the other side with a sweeter personality and many of my friends find my little communication quirk cute. [rolling eyes]

      We can only pray that Courtney digs down deep and pulls out well enough to continue with a normal life. We want her riding for our country because we love her and need her.

      TBIs should be taken more seriously than they are. After my TBI my barn friends and coach were worried because I actually kept my feet on the ground for an entire month. They thought I had lost my nerve. (pardon the pun).
      Nope, nerve was not lost, neither was common sense. : )
      http://kaboomeventing.com/
      http://kaboomeventing.blogspot.com/
      Horses are amazing athletes and make no mistake -- they are the stars of the show!

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      • #43
        I don't understand why they still say she's in a coma when she can smile, follow things with her eyes and move?
        Love and compassion are necessities, not luxuries. Without them, humanity cannot survive. Dalai Lama

        Comment


        • #44
          If she's following orders and interacting she's no longer in a coma. But I think the post about that and the one saying she's still in a coma were from 2 different people? Not sure.

          I agree with the original post, btw. Once it was made clear that the "jingles" thread was to be for well-wishes only since it was being printed and given to the family, those jokes along the lines of "you've had enough time, wake up" should've disappeared. If posters are doing this to cope for their own reasons, they should cope on a different thread - much like those asking questions about helmet use were asked to direct their thoughts elsewhere. If you catch the family at a low time, those types of "wishes" can be quite hurtful. It's different if you're a family member or close friend, but most of the posters are strangers.
          Proud Member Of The Lady Mafia

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          • #45
            Originally posted by Discobold View Post

            I don't understand the post about "attitude" or exactly what the poster intended to convey. I once participated in a survivors support group led by mental health professionals. When someone suggested "it's all about attitude," the professionals unanimously and emphatically shouted "BS." This is not to say that attitude isn't important, but often those who talk about attitude haven't experienced a life-altering tragedy.
            Brain damage isn't mental, it's physical even though you can't see it.

            It's easy to say "well you should just be glad you're alive" to a person who wants to walk and talk, or ride or drive. It's easy to say "Let me do that" when a person is struggling with a simple task. It's so easy to ignore and talk around a person who is having trouble communicating.

            And it is SO easy to think "What about me?" at the end of a long day caring for someone, even when you love them very much.

            It's hard to say "Yes you can and you will" time after time when she wants to give up. It's hard to say to an adult "No you can't drive your car, no you can't walk down to the pond to feed the ducks when it's 100 degrees, no you can't build a fire in the fireplace, no you can't use the stove when I'm not around"

            Unless Courtney is much more of a saint than my mom was there are going to be times when frustration gets the better of her and she says horrible things to her caregivers. My mom mastered, early on, "I hate you. I want to die"

            This is going to be an ongoing struggle for her but also her family and friends and attitude is going to be very much a part of it.
            I wasn't always a Smurf
            Penmerryl's Sophie RIDSH
            "I ain't as good as I once was but I'm as good once as I ever was"
            The ignore list is my friend. It takes 2 to argue.

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            • #46
              Attitude is EVERYTHING.
              Love and compassion are necessities, not luxuries. Without them, humanity cannot survive. Dalai Lama

              Comment


              • #47
                When you've gone through it, and I hope you never do, you will understand that all the positive attitude in the world is not going to be able to make the index finger on your right hand push the "on" button on your computer screen, even though you know that this is what you need to do to turn it on. And when you're still trying, hours later, and you still can't make it happen, you will find that the mosy jolly, Up With People attitude in the world still isn't going to make your hand go up and put your finger on the button. TBI is devastating to go through. You will never be the person you were prior. Do understand that attitude doesn't always help.

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                • #48
                  I would say attitude is half of it.

                  Strong attitude will help to fight a depression that comes with every negate change in life. and Courtney will have to fight change in her life not only physically, but mentally as well. It probably will be years, not days or months to be back to 100% and I hope that there still be patient people around her to support her in that mental and physical fight.

                  It seems that she is coming out of coma already. This is already great, great news!!! She will not be in coma, not responsive for months and months and she will not be a vegetable!!!! I might be wrong, but it seems that her recovery is actually going quite fast/good for coma patients?

                  Comment


                  • #49
                    Coreene, that is absolutely true! I didn't know you've gone through TBI too. I can remember being so totally frustrated with myself when I couldn't do or remember something simple. I know it drove my bosses nuts when I'd call the vet out and send them off without seeing a couple because I'd forgotten they were on the list. That was one of the small things that drove the bosses nuts.

                    I couldn't talk right, couldn't remember the words for things and KNEW I was struggling but couldn't figure out how to get it right. THat was probably the most frustrating thing for me, knowing I was off and not being able to fix it. I remember doing a 5 hour neuro psych exam and crying all the way home because it really made me realize all at once, all the deficits I had and couldn't fix. It was wierd, I could do all the spatial, physical manipulation exercises perfectly but reading and speech and memory were just not there. I sucked at math before that, so it was hard to say how badly that was affected. It took me a LONG time to get the language/memory stuff back.

                    I had a friend who took care of me and did a lot for helping me get brain function back. We used to play card and board games. I used to cry in frustration that I couldn't remember what cards were in my hand from turn to turn in the beginning. I'd pick up a deck (that I'd played a lot) and say Oh this is new, I've never played this one before. um yeah, you played that one last night. He always beat me but eventually (and it took many many months) I started to win a few. I could tell I was getting some brain going again and I really credit that with making myself play games that required thinking and logic. It was probably a year before I really could say I was ok (as I ever was anyway ) We now call those the 'brain dead days' and he sometimes whines now that I'm hard to beat now and he has to think too. High praise for me!

                    It is hard to get through. I remember being so down much of the time because I just couldn't do stuff. Bosses and others at work were constantly telling me in the beginning, you had a brain injury, you can't do x right now, because I would forget or want to do something dumb... like drive. They had to be forceful with me sometimes too. Rah rah cheerleading, you can do it, just didn't do it sometimes.

                    Comment


                    • #50
                      Originally posted by ridgeback View Post
                      I don't understand why they still say she's in a coma when she can smile, follow things with her eyes and move?
                      Fron Lendon'd FB page:

                      "Just want to clarify-to say Courtney is out of her coma is a bit optimistic. I have learned that coming out of a coma isn't like it is on TV-one day unaware and moments later all is normal. Not so. The veil seems to be gradually lifting for short moments. I haven't talked about the long periods of time when the veil is... still in place. But I am convinced Courtney is fighting to get rid of that pesky veil totally."

                      Comment


                      • #51
                        Check out this site on TBI http://www.traumaticbraininjury.com/...comascale.html

                        The Glasgow Coma Scale is used to rate coma patients on different responses. The scale is 1-15, with 1 being vegetative and 3-8 being severely impaired. It is possible to be responsive to stimuli and yet be considered to be in a coma, which is I think what Dressage Art was asking a few posts up.

                        The time frame for recovery differs hugely among patients. Some days are better than others. It is positive that Courtney is showing responses and we all hope that she continues on that line! But yes, even with those responses, she is still in a coma at this point.

                        Comment


                        • #52
                          Originally posted by Coreene View Post
                          When you've gone through it, and I hope you never do, you will understand that all the positive attitude in the world is not going to be able to make the index finger on your right hand push the "on" button on your computer screen, even though you know that this is what you need to do to turn it on. And when you're still trying, hours later, and you still can't make it happen, you will find that the mosy jolly, Up With People attitude in the world still isn't going to make your hand go up and put your finger on the button. TBI is devastating to go through. You will never be the person you were prior. Do understand that attitude doesn't always help.
                          I understand that attitude can't help you do something if your brain won't let you

                          Attitude however makes you keep on trying rather than giving up.

                          For both the patient and the caregivers
                          I wasn't always a Smurf
                          Penmerryl's Sophie RIDSH
                          "I ain't as good as I once was but I'm as good once as I ever was"
                          The ignore list is my friend. It takes 2 to argue.

                          Comment


                          • #53
                            Originally posted by Coreene View Post
                            When you've gone through it, and I hope you never do, you will understand that all the positive attitude in the world is not going to be able to make the index finger on your right hand push the "on" button on your computer screen, even though you know that this is what you need to do to turn it on. And when you're still trying, hours later, and you still can't make it happen, you will find that the mosy jolly, Up With People attitude in the world still isn't going to make your hand go up and put your finger on the button. TBI is devastating to go through. You will never be the person you were prior. Do understand that attitude doesn't always help.
                            Coreene I meant attitude as how do you deal with it and accept it. That is the most difficult thing to do...the choice to accept whatever life throws at you and be Ok with it. I so admire people that have that kind of attitude.
                            Love and compassion are necessities, not luxuries. Without them, humanity cannot survive. Dalai Lama

                            Comment


                            • #54
                              Originally posted by carolprudm View Post
                              Brain damage isn't mental, it's physical even though you can't see it.
                              I don't know if you are disagreeing with me. . .but THAT is exactly why attitude isn't everything. Though I realize I was vague, the support group I mentioned was at a cancer center for patients and loved ones of patients who were facing bone marrow transplants. There were mental health professionals there because a bone marrow transplant is a big deal. Saying that "attitude is everything" suggests that people who don't make it or don't do as well have a worse attitude. That's just wrong

                              Coreene explained it better than I can.

                              Comment


                              • #55
                                Originally posted by Mollys Mum View Post
                                In another thread, a member posted this concerning Courtney Dye's recovery--and there have been similar posts in this vein:



                                I know the poster was probably trying to be sweet and funny, but comments like this are inappropriate. I have had brain surgery twice and have a fair amount of experience with both friends and family suffering from coma and brain injury. From what I understand, Courtney experienced diffuse axonal injury, commonly known as "shaken baby syndrome," where the whiplash effect of a sudden rebound shears the long axons of the brain's neurons, the "stems" that help transmit impulses from one braincell to another--allowing for thought, movement, etc.--throughout the brain. The true extent of such an injury can be very hard to measure, and nerve regrowth can be glacially slow, though miracles can and do happen.

                                It is enormously encouraging that Courtney as come as far as she has, and I truly believe the outpouring of support and prayers has much to do with this. To sit by the side of someone you love going through this kind of recovery is a special minute-by-minute hell all its own. You cherish and are hyperalert to the smallest sign of improvement--an extra eye movement, the flicker of a response to stimuli. There are wonderful days of progress, followed by seemingly endless plateaus. Life as you know it changes completely, revolving around an endless cycle of rehab, injections, tests, procedures, hospital routines, the threat of infection, the joy and hope and anxiety of every change. It can be agonizing, and I have tremendous respect for the grace, patience and courage of Jason, Lendon, and the rest of Courtney's entourage in their ordeal.

                                So, I would caution that those who want Courtney "back down centerline" and feel that enough time has passed, and that "it's time to wake up" be sensitive to the reality of the situation, and understand that such comments, no matter how well intentioned, don't take into account the gravity of her injuries and the necessary patience and understanding--which her family and close friends have in spades--that are the true marks of unconditional, long-term love and support.
                                OK, Molly, I'm going to be sensitive to your feelings and this comment. But since MINE was the post you are complaining about enough to copy and paste here, I feel compelled to address you.

                                I'm a Ph.D. physiologist working in the research department of a medical school. My current research addresses stroke. I am WELL AWARE of the physiological consequences of Courtney's situation.

                                I am also pretty certain that Courtney's loved ones - or anyone's loved ones in such a circumstance - are thinking the exact same thing: please wake up. The sentiment expresses HOPE, and frustration, and longing, and saddness, and all of the other emotions that *the family* is feeling as they sit with a patient in the hospital just waiting....

                                I am very sorry that you experienced brain trauma and am very happy that you survived them so well. But please to not dictate to people how to express sorrow or grief in public, which is what I was doing. That is not your place.

                                Respectfully,
                                J.

                                By the way, I sent an expanded version of that email to Jason via Courtney's email address. I suspect that if he is truly offended he will let me know.

                                PPS> Coantine, the post was not a joke, for gods sake. Please go back and read it.
                                Last edited by J-Lu; Mar. 21, 2010, 08:11 PM.
                                Proud member of the Colbert Dressage Nation

                                Comment


                                • #56
                                  Since when, people dictate what questions can be asked.

                                  Attitude is a state of mind-excepting what is dealt to you...I don't think it has anything to do with if one person makes it or not...If it is someone's time to go I don't think there is much one can do about that.
                                  Love and compassion are necessities, not luxuries. Without them, humanity cannot survive. Dalai Lama

                                  Comment


                                  • #57
                                    Originally posted by Discobold View Post
                                    I don't know if you are disagreeing with me. . .but THAT is exactly why attitude isn't everything. Though I realize I was vague, the support group I mentioned was at a cancer center for patients and loved ones of patients who were facing bone marrow transplants. There were mental health professionals there because a bone marrow transplant is a big deal. Saying that "attitude is everything" suggests that people who don't make it or don't do as well have a worse attitude. That's just wrong

                                    Coreene explained it better than I can.
                                    I never said "Attitude is everything" If attitude was everything Christopher Reeve would be riding and my mom would be talking.

                                    I am trying to say attitude keeps you TRYING. Attitude won't help you DO, but if you don't TRY, if you just give up, you will never DO.

                                    I was sole caregiver to my mom for 12 years after my dad died. She had brain damage from a brain tumor and subsequent surgery. I believe her attitude, my dad's and later my family's attitude helped her regain some speech.

                                    When the therapist wanted to give her a deck of cards with pictures to help her communicate we said "NO, that's not good enough. She needs to be able to speak." We said what she could at that time not say. And we hauled her to therapy three times a week. For about 5 years. And mom tried and tried and tried.

                                    She wanted to SPEAK.

                                    SHE never gave up.

                                    WE never gave up.

                                    That's where ATTITUDE comes in.

                                    Even when we knew the meningeoma came back and she refused surgery.



                                    That's attitude.
                                    Last edited by carolprudm; Mar. 22, 2010, 08:42 AM. Reason: clarity
                                    I wasn't always a Smurf
                                    Penmerryl's Sophie RIDSH
                                    "I ain't as good as I once was but I'm as good once as I ever was"
                                    The ignore list is my friend. It takes 2 to argue.

                                    Comment


                                    • #58
                                      Originally posted by ridgeback View Post
                                      Coreene I meant attitude as how do you deal with it and accept it. That is the most difficult thing to do...the choice to accept whatever life throws at you and be Ok with it. I so admire people that have that kind of attitude.
                                      Yes, this I absolutely agree with re attitude.

                                      Comment


                                      • #59
                                        As a result of this thread, I've done some internet reading about TBI and I have to say it is pretty scary. I had a barn acquaintance a number of years ago who went through something like this; She had a long slow road to recovery, but thankfully made it back to her career professionally and her love of riding show hunters. What was eye-opening to me was to read about the challenge of personality change; this person I knew came back a very different person and it cost her, sadly, some close friendships. Thinking back now, I can't help but think how sad it was that people were not willing or knowledgeable to understand and cope with the changes.
                                        Wishing all the best for Courtney and hoping that her recovery is blessed with positive results.
                                        We don't get less brave; we get a bigger sense of self-preservation........

                                        Comment


                                        • #60
                                          Originally posted by Discobold View Post
                                          I appreciate the original post and am not sure why it offended some people. While we may disagree about what's appropriate or inappropriate, Molly's Mum made her points in a gentle way. And we have to thank her for opening up the topic and giving us rodawn's excellent post. I DO know everyone copes differently, and that everyone means well, but I also know from first-hand experience that sometimes well-meant comments are hurtful. I'm not saying the one quoted was. I am 100% sure it was meant lovingly.

                                          I don't understand the post about "attitude" or exactly what the poster intended to convey. I once participated in a survivors support group led by mental health professionals. When someone suggested "it's all about attitude," the professionals unanimously and emphatically shouted "BS." This is not to say that attitude isn't important, but often those who talk about attitude haven't experienced a life-altering tragedy.

                                          I'm lighting candles for Courtney and hoping for the fullest possible recovery!
                                          I can appreciate the OP's emotion but I believe the OP is lashing out. I believe it is poor judgement to present a well-meaning post and pass judgement on it and is not a gentle way to open a topic.

                                          I do not believe that quality mental health professionals would claim that a positive attitude is not a large part of recovery. It is known that depression has a negative impact on the body. It is obvious that a positive attitude does not solve the problem and I do not understand why people are focusing on that extreme here. A person at a given state of recovery will always benefit more from a positive attitude than a negative attitude. Would anyone disagree with this statement?

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