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Thread: When you forget how to open a door - venting

  1. #11
    Senior Member grommet's Avatar
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    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 :-)

    Quote 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.

  2. #12
    Senior Member grommet's Avatar
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    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.

    Quote 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

  3. #13
    Moderator jody's Avatar
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    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.

  4. #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.

  5. #15
    Senior Member grommet's Avatar
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    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.

    Quote 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.

  6. #16
    Grommet: I can't believe you do not have one friend to act as confidant/co-manager of your important health issues. "I'd rather do it myself": Does that attitude really work for someone with an impairment of organizational type skills?
    Do you realize you are guessing that the person will be "bothered"? If they truly are bothered they are not the right person for the job. And, it is a job that you can repay the person with a nice meal, gift, etc.
    I agree that the healthcare system can be vastly improved for disabled persons. Recently had annual physical in a tiny room that was the only one with a low table for transfer. The doctor had to climb over my wheelchair twice to get around. I was secretly chuckeling.

  7. #17
    Senior Member grommet's Avatar
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    Triumph, I have a partner who has asked and sometimes I have asked to come with me for health appointments and she has been an angel. She went with me when I went to a new clinic and see the process about signing up. Each time the interviewer asked questions and I was confused I looked at my partner and she answered for me. It was great and I really appreciate she did that. She has been there when I needed oral surgery, a crazy last minute thing that had her leaving work early and running across town. She took me to the pharmacy after and stayed with me. She's done that other times too. She took me to a cancer screening, an appointment I was nervous about for months. She helped me figure out how to find the right room and how to sign in. So I have asked for and gotten help. I just don't want to overburden her or other people (before I met my partner I had others take me to appointments). I am not alone.

    I try to keep my asking for help for the serious things, things I just don't think I could manage on my own. My friends help me a lot but I don't want to only be the guy who is going to need something so I try and censor. I think we all do that. I think it's one thing that CC is good for, reaching out to peers. Thank you for your concern.

    It's funny how over the years, people who care about me have just gotten completely used to how I function. I am surrounded by people who accept me. That's really wonderful :-)


    Quote Originally Posted by triumph View Post
    Grommet: I can't believe you do not have one friend to act as confidant/co-manager of your important health issues. "I'd rather do it myself": Does that attitude really work for someone with an impairment of organizational type skills?
    Do you realize you are guessing that the person will be "bothered"? If they truly are bothered they are not the right person for the job. And, it is a job that you can repay the person with a nice meal, gift, etc.
    I agree that the healthcare system can be vastly improved for disabled persons. Recently had annual physical in a tiny room that was the only one with a low table for transfer. The doctor had to climb over my wheelchair twice to get around. I was secretly chuckeling.

  8. #18
    Thanks for clarifying. It sounds like you have some good strategies that work for you. I do like Sue Pendleton's suggestion of cognitive therapy. Since you said your brain damage was since birth, and you are middle-age, there must be major advances since you had any help like this when you were growing up.

  9. #19
    P.S. CC is a great "support group" in addition to an in-person one.

  10. #20
    Senior Member grommet's Avatar
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    Seeing a someone a CBT this week. If I learn something I can share about therapies I will post to this thread. It's been such a part of my life I don't know much different except seeing how other people live. A joke I guess I've been telling myself since I was young is that when I am old and my mind goes, who will know the difference ;-) Heck I'll have the advantage because for them it'll be something new. Recent example - I spent all day yesterday with my partner but today I only know that because of the date on the calendar. In my mind I know we were together recently, which could mean within the last week or two months. Of course other things are crystal clear, like when I was ten and we moved into a new house and had to use a special floor cleaner. I remember it was Trisodium Phosphate (TSP) and needed warm water to work on our wood floors. How that helps me in life I don't know but that's what my brain gives me ;-) Oh what fun.

    Quote Originally Posted by triumph View Post
    Thanks for clarifying. It sounds like you have some good strategies that work for you. I do like Sue Pendleton's suggestion of cognitive therapy. Since you said your brain damage was since birth, and you are middle-age, there must be major advances since you had any help like this when you were growing up.

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