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When you forget how to open a door - venting

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    When you forget how to open a door - venting

    A couple of days ago I came home to my front door and .. that was it. I no longer knew how a person gets past a door. It came back to me but for a little while I simply sat looking at the door. I knew there was a way to open it but I had no idea how that was done. I had zero concept of keys or any other thing that opens it. So I just sat there. My brain taking me to that place, again. The place where I stare at a telephone and recognize that it is a thing but I don't know what kind of thing. This time it was my front door. After a bit, like it usually does, the information was available and I knew about doors. I got my key then my remote door opener and I was inside.

    Explaining what it's like living with a damaged brain .. I haven't been able to communicate that to people who don't. I haven't been able to get myself to a support group and I don't know when I will. In the meantime I have these little adventures alone and those who care about me try to understand. How do I tell them it isn't like forgetting something, it's the total absence of that information. It doesn't exist. Then when my brain does whatever it needs to do to reset, the information comes. It doesn't come back like a memory either, it comes as brand new information as if I landed on the planet having lived a whole life never knowing about the thing, then I am taught about it.

    I have lost days, seasons, years, entire knowledge of friendships. Almost always, these things come back. But how the heck do I convince people that I am not kidding, I honestly don't know who you are, at all, period. Again, my friends come in and help and they are wonderful.

    I guess I just needed to vent.
    Last edited by grommet; 11 Jul 2014, 8:37 AM.

    #2
    Vent away. While I don't know about brain injury you described how I think my husband feels too. He has MS and sometimes I think the nerves in his brain are misfiring because I can see that same empty look you described in his eyes. He's never described it like you just did but that helped me to better understand so try telling your family and friends the same thing you just said here.

    Comment


      #3
      I'm touched. I hope writing something about myself did help you. I think it would help me to talk with others who have these experiences. Still not ready for a support group, I think I will find people as I go along and we can share our experiences. The strangeness of having no knowledge of something then later, knowing it, is something I would like to hear about from others. I relaxed into it years ago, realizing it was going to last as long as it would last. Two experiences stand out. The first time I stared at a telephone on a desk and had NO information on what it was, and a mutual friend who it took six months before I could remember that I knew him. I've wondered how to have a job when I don't know if I'll have a "funny brain day" or moment. Working on it. :-)

      Originally posted by MSWIFE1 View Post
      Vent away. While I don't know about brain injury you described how I think my husband feels too. He has MS and sometimes I think the nerves in his brain are misfiring because I can see that same empty look you described in his eyes. He's never described it like you just did but that helped me to better understand so try telling your family and friends the same thing you just said here.

      Comment


        #4
        Hi grommet,May I ask what kind of brain damage you have? Is there anything you have looked into like stem cells to help repair it? I am also dealing with brain damage so I empathize with anyone who has the same however my greatest focus is on finding something to fix it and I have done lots of research for this.take care,sog

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          #5
          Sog, I was born with damage and have lived with it so long that although it frustrates me and limits me I wouldn't consider treatment. As I grow and change I need self-acceptance and strategies. That is something I think I could get in group support but though I have checked the resources out I haven't been comfortable enough to go. If I was newly injured in the brain I could see wanting things to change and maybe at any cost but it's who I am. I am middle-aged. I would rather do the little things that help rather than take a large risk with medical treatment. Just my view.

          It's funny, years ago I was with a friend who has CP and we met someone with CP and severely impaired speech. My friend almost instantly understood what was being said. I recognize "brain people", not always, but often enough that I can let other people know when they need to ignore something or offer a little more support. People with injuries who have sudden mood changes scare me. It's not their fault, it's the damage, but still it's hard for me to manage when that's happening. Everybody is different. I hope you do find some cure for yourself. I do like reading science fiction about people going through radical brain treatments and the changes they go through. I remember one character, after treatment, not remembering anything of his old personality and even wondered why he would have acted that way. I am me, I don't work right but still, I am me and I'd choose to stay who I am. As far as other disabilities go, oh yeah, I'd change those in a second!

          Comment


            #6
            Just saw this a few days ago in our local newspaper:
            Building a 'memory bridge': Livermore lab researchers receive $2.5 million for implants to restore functioning in brain-injured patients

            http://www.mercurynews.com/bay-area-...hers-receive-2

            "A prosthetic device embedded in the brain that would bridge gaps in the brain's memory functions. It would be for service members, veterans and all those with traumatic brain injuries.

            Researchers said it would sense memory deficits, encode neural signals and bridge gaps in the damaged brain, allowing the continued formation of new memories and recollection of old ones."

            All the best,
            GJ

            Comment


              #7
              grommet, have you discussed this with a doctor? This sounds like something is starting to happen. You could have been having some type of mild seizure from what you describe. This is why I suggest you take what you wrote here to a doctor and see what they have to say. Has this happened more than once?

              Comment


                #8
                GJ, I checked the link, that was very interesting. Yes I would, if there was a simple chip or something similar and small, be interested. If something wouldn't affect any other part of me, just improve memories, that would seem like a gift. Over the years as I have been told about experimental brain surgeries I have said that I'll sign up to be the 1,000th patient. Scary thing having someone work on your brain but then if I could have a more normal life, I would be interested. I guess my feelings about the situation are more complicated than I thought. Thanks for the link :-)

                Originally posted by gjnl View Post
                Just saw this a few days ago in our local newspaper:
                Building a 'memory bridge': Livermore lab researchers receive $2.5 million for implants to restore functioning in brain-injured patients

                http://www.mercurynews.com/bay-area-...hers-receive-2

                "A prosthetic device embedded in the brain that would bridge gaps in the brain's memory functions. It would be for service members, veterans and all those with traumatic brain injuries.

                Researchers said it would sense memory deficits, encode neural signals and bridge gaps in the damaged brain, allowing the continued formation of new memories and recollection of old ones."

                All the best,
                GJ

                Comment


                  #9
                  Grommet, have you ever discussed this as an adult with a neurologist? With everything new we have learned about the brain many people have benefited from cognitive therapies. It is basically exercises to get another part of your brain to take over the missing areas. I know there is a place in Florida that specializes in people who have had strokes but there are less intense practitioners elsewhere. I think I would find those missing times very scary. Good luck.
                  Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

                  Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

                  Comment


                    #10
                    Grommet LOL, know it's not funny but have a multiple concussive issue and low grade TBI from the military and occasionally forget how to speak English and speak some other language. My wife first thought I did it to either impress her then piss her off, know she just walks out gets a book or magazine and tosses it to me to rewire to English. he also leaves me notes on things I tend to go dumb on. I actually can't figure out how to turn on the coffee maker and never forget the code but zone out on how to turn off the house alarm, there is a permanent note under it that says press buttons with an arrow to the keypad.

                    Don't let it get to you and if you investigate this please post anything you find! GL Thank you for the link


                    ket

                    Comment


                      #11
                      No actually I never did think of that. You have me thinking about it now. As far as scary, well yeah it is but I've been experiencing it for so long that I just started going with it. I think the first time I got scared was when I forgot two weeks of my life. I tried but nothing would remind me of it. Talking to a neurologist might something I should do. I find it so difficult to navigate the health care system I shy away from it. A few weeks ago I peed a lot of blood for more than a week and I just waited it out. Off topic maybe but I do find the system intimidating especially with my concentration and memory difficulties. I often don't answer when I am asked a healthcare question regarding when I did something or how often, honestly I want to say, "How would I know?". You've got me thinking about the neuro thing. If there is a therapy I would do it. I have heard many times about re-training the brain, using different areas. That's okay with me. Anything that helps. Thank you for the idea :-)

                      Originally posted by Sue Pendleton View Post
                      Grommet, have you ever discussed this as an adult with a neurologist? With everything new we have learned about the brain many people have benefited from cognitive therapies. It is basically exercises to get another part of your brain to take over the missing areas. I know there is a place in Florida that specializes in people who have had strokes but there are less intense practitioners elsewhere. I think I would find those missing times very scary. Good luck.

                      Comment


                        #12
                        Hey Ket, I know you understand. That is exactly what it's like. I am glad you've got some friendly help. Things like leaving notes for something that is obvious is actually what a lot of us need. I am not bothered by it at all and ask friends all the time very obvious questions, I mean really obvious stuff and they have learned I am not joking and they help me out and answer. My sense of time is bizarre and I can think something I did in the morning is something I did months ago. Lots of things like that. My partner will thank me for doing something and I have no memory of ever doing it and I'll ask her, "Did I do that? Okay, you're welcome."

                        If I do find some therapy and something happens I will post about it. We funny brain people gotta help each other out. Man it's a tricky thing navigating life when you are forgetful and confused a lot of the time.

                        Originally posted by ketamine kitty View Post
                        Grommet LOL, know it's not funny but have a multiple concussive issue and low grade TBI from the military and occasionally forget how to speak English and speak some other language. My wife first thought I did it to either impress her then piss her off, know she just walks out gets a book or magazine and tosses it to me to rewire to English. he also leaves me notes on things I tend to go dumb on. I actually can't figure out how to turn on the coffee maker and never forget the code but zone out on how to turn off the house alarm, there is a permanent note under it that says press buttons with an arrow to the keypad.

                        Don't let it get to you and if you investigate this please post anything you find! GL Thank you for the link


                        ket

                        Comment


                          #13
                          hi grommet, try adding B12 to your vitamins. it helps with your brain, as well as other nerves and nerve functions. It won't cause you any harm as well. I like Natures Bounty that you can get from rite aid. Iv tried other brands, but this one is readily available and of good quality. maybe niacin as well but get the 250 dose to avoid flushing, which is like a hot flash.

                          we have no way of getting it from food, unless you buy from local farmers, since grocery food is irradiated, and when we take antibiotics it kills the bacteria in our gut that produces b12. antacids also prevent the absorption of b12.

                          so at least after using antibiotics you might consider using b12 for a while.
                          B12 is very important for the brain and so is Niacin which is also a B vitamin.

                          Comment


                            #14
                            grommet: your statement that 'I peed a lot of blood for a week', then no mention that you sought medical attention for blood loss?? Were you exaggerating or what?
                            If true, makes me wonder if you should consider having a close, designated friend/helper to discuss medical issues and help you decide when to seek medical care and when to 'wait it out'. In short, someone to assist with judgement of issues.

                            Comment


                              #15
                              Triumph, thank you for your concern. I was peeing blood for more than a week, I exaggerated maybe a bit by saying "a lot" but I am alarmed whenever I pee blood. It was Merlot colored for a few days, got darker, then I peed clots for a few days. The clots made me nervous too but also made me think things were healing up. I don't mean to worry people. I was just illustrating how hard it is I find navigating healthcare and so I make compromises, not going unless it's something unmanageable or too painful. It's not the best for health I guess but everyone needs their own strategy. I've been dealing with doctors and all that go with it, for a long time. Often their advice is to wait two weeks and come back if something is worse. I sometimes figure just to start with the two weeks and see them if it does get worse.

                              It's very stressful having an appointment when you don't know if you can remember the appointment and all that goes with it. I once forgot an appointment five times in one day after constant reminders with notes on the computer, my wall, my watch alarm and wall calendar. A little before the appointment I noticed something written on my calendar and realized I had an appointment. I wasn't reminded, I learned for the first time (how it felt) that oh, I have an appointment. Made it in time. That's really hard. Then there's paperwork, health cards, being told where to wait and doctor's questions that while appropriate, I don't know if I will remember the answers. With all that, I avoid going unless I think I don't have a choice. I've made it so far. Not the best thinking I admit but you do the best you can. An advocate? I .. do talk to my partner and friends but I don't want to worry them and I have only had one serious problem and though it was chaotic in the end, eventually everything worked out.

                              The healthcare system is ironically not all that accessible to people who are disabled (my opinion). They treat everyone the same and the experience is so confusing and so, stressful, that I think I must not be the only one who tries to avoid it. Just hope I never have signs of a heart attack or stroke one day and decide to wait that out on my own but maybe I will live a long healthy but uncomfortable life. I worry about worrying those who care about me, especially if it turns out to be nothing. You try taking care of someone who's brain is all funny, must be a pain in the butt. So I don't want to burden people. I try to handle things myself. Maybe I will grow to trust more and be willing to tell people when something seems wrong and they can help me decide what to do. I often gripe here so I don't have to let those near me a lot of what's going on. Toughening up is a good thing, if I am thinking correctly. A nurse once told me about tiny vessels that can break and cause bleeding and it isn't a serious problem. That's the advice I went on this last time.

                              Maybe I go to far trying to prove that I am not attention or drug seeking - phrases I expect many here have heard go around in health care. Up to me, I'd never see another doctor again. The dentist it seems is wise to see as often as needed. I'll keep that up. It's early, so I hope this post isn't too rambling. Good morning.

                              Originally posted by triumph View Post
                              grommet: your statement that 'I peed a lot of blood for a week', then no mention that you sought medical attention for blood loss?? Were you exaggerating or what?
                              If true, makes me wonder if you should consider having a close, designated friend/helper to discuss medical issues and help you decide when to seek medical care and when to 'wait it out'. In short, someone to assist with judgement of issues.

                              Comment

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