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Thread: In Your Face

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    Default In Your Face

    Wow, I had a real eye opener with the state mandated psych today. He didn't have much time since I mixed up locations (glad to see we have a new facility closer by now that I know about it!) so he blazed through these questions. One question that came up was did I have memory issues. I quickly replied "Yes! Absolutely!" He started asking these questions, throwing numbers at me, asking me words to remember later. He wasn't being rude, it was just a line of questioning I hadn't had before. It took me about two minutes to begin to really see just how impaired I am!! I'm not kidding. Then he asked about this other doctor I had seen and I went as blank as a white piece of paper. I could see the doctor in my mind and where we sat in her office, but her name and the location simply were gone. He'd ask me to repeat sets of numbers and by around the third set, he might as well as been speaking Japanese. Gosh, I hope they don't take my kid or car away! I can still do day to day living skills -- I guess it's just fast moving information.

    Is this common?

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    rob is offline Super Moderator Super ModeratorEmperor of the World
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    Is this common? I don't know, I can't remember!

    All kidding aside, for me, yes this is very common. And I'd say from what I know about others here, it's a common thing for just about all of us. I sometimes get lost coming home from the grocery store in a town that I've lived in for many years. I used to have an excellent memory, but now I struggle with even the simplest of things. I forget how to spell simple words, and I often draw a total blank in conversations with others. I have to keep my own phone number written down on a card in my wallet, because I can't remember the damn thing. I've had the same phone number for oh, 5 years now I think. I'll call someone on the phone and in the time from hearing it ring to when they pick up, I'll completely forget who I am calling, and why.The frustration can be maddening.

    When I was first evaluated to see if I qualified for disability, I saw the SSI mandated psych too, and was asked the same basic sort of questions you were, and my experience was pretty much the same as yours. Something like-Uhhh, what? And then I just drew a total blank.

    Rob

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    Welcome to the world of the neuro psych exam! Yes, this is very common! I can't remember my phone number (thanks for the tip Rob), I get lost coming home from a place I just went, conversations are difficult because in the middle my mind goes completely blank. It is shocking to have the results hit you in the face like that. I remember when I took mine and I had to see just how bad I had become. Shocking.

    The good news is that it will show proof to the SS/Dis people what you have been trying to tell them. *hugs*
    Mari

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    Thanks guys! I just went back and saw a couple of blogs I wrote that I have NO recollection of writing. I'm going to try to write each day in hopes of maybe keeping my mind fresh and my skills sharper (I'll try anything!). Losing these skills is absolutely terrifying! A person always thinks, "maybe I'm making something out of nothing." No, in this case, it's very, very real. Do you guys think it's like a short circuit in the brain or the memory portion of the brain is shutting down like in alzheimers? I would love to know much more about this! How can something that affects the joints and organs in a pain sort of way affect the brain in this manner? Sorry, that sentence didn't make much sense but you know what I'm trying to say.

    Do you both have a support person at home that helps you when it comes to driving and cooking and such? I only have my son and he can't drive or cook or things that involve a more adult level. He's very mildly autistic which limits his ability to help me out. Honestly, I'm really concerned about the future. I already told my parents that I'm okay with me ending up in long term care if it comes to that. Just make sure I've got cable! I just don't want my parents or my son stuck taking care of me. I wish I wasn't the patient because honestly, I'm fascinated by all of this and would love to study it. What a whacked out disease! Every person has a different variation but there's so many similarities.

    Oh, and I took a break to take my cat to the vet and got lost. I was just there two nights ago!!! Things were familiar but I didn't know where or if to turn!! All I could think was, "okay, it is officially happening to me now." Maybe it's time for a neurologist.

    Take care guys and thanks again for your support. It means everything!

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    rob is offline Super Moderator Super ModeratorEmperor of the World
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    Serand4,

    We are suffering from Cognitive Dysfunction (AKA Brainfog), and nobody knows what actually causes it. Like you, it fascinates me, despite the fact that my fascination is dampened by the very thing I am fascinated with! (How twisted is that?) I am lucky, as I have plenty of support for the times when I can't quite get it together enough to do my daily tasks.

    I've done a bit of reading on the subject of Cognitive Dysfunction, and there are quite a few very interesting theories, and possible links to all sorts of stuff both physiological and environmental that might yield some answers one day. But for now, what causes CD in people with Lupus, and in people with other autoimmune disorders, is still a mystery.

    Rob

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    Cognitive Dysfunction. A nice term that means my brain doesn't work the way it should. My daughter is 15 and she does the driving now (without a license) but I still do most of the cooking. I mess up things that use to come second nature because the information just isn't there. You talk about getting lost on the way to the vet. I can tell you that I once got lost in my house. No, my house is not large. It is very small actually but I couldn't remember which room was mine or how I needed to go to get there.

    For me there was an acceptance that came after the fear. At first I wanted to prove I could still do everything. I could drive and I could shop (omg I can't go to the store alone. I get completely lost even in stores I have used for years) and I could be independent. Eventually something happened (being in downtown houston and sitting at a 4 way stop and having no clue where I was or how I could get home) that led me to a place of acceptance. My life is different now. It isn't how I imagined it being but it is still ok. I have a wonderful daughter and I can still laugh and play with my animals and cook dinner on the days I am feeling ok. It is a quieter life then I had before but that doesn't mean it is all bad.

    Acceptance. It was a hard to come by gift but one that I am very thankful for
    Mari

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    The cognitive dysfunction scares me, too. My mother and my aunt both went down this road. My cousins and I were told that they had Alzheimer's at the end of their lives, but now I can recognize that they had gone through all of the symptoms that I can now recognize as AI issues.
    They were both functional until their late 70s, but it scares me that my mind could be gone in 20 years.
    I'm lucky - I can still drive locally and my memory isn't too bad yet, but I know that it isn't what it used to be.
    Hugs,
    Marla

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    What you all describe is exactly what I'm experiencing. I no longer mention it to my family. I always get the "well, you have so much on your mind." Yes, yes I do -- if I could just remember what it was! I try to be SO careful when I drive but then you have the other drivers who aren't necessarily paying much attention either. It's kind of a crap shoot on whether you'll make it home or not! Hopefully this week I can get in touch with the social worker from the hospital. If I get sick like I was a couple of weeks ago, I'm going to find out exactly what my insurance will cover and I'm going to take full advantage of it. The downhill plunge is going just a little too fast not to take it seriously.

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    Quote Originally Posted by serand4 View Post
    What you all describe is exactly what I'm experiencing. I no longer mention it to my family. I always get the "well, you have so much on your mind." Yes, yes I do -- if I could just remember what it was! I try to be SO careful when I drive but then you have the other drivers who aren't necessarily paying much attention either. It's kind of a crap shoot on whether you'll make it home or not! Hopefully this week I can get in touch with the social worker from the hospital. If I get sick like I was a couple of weeks ago, I'm going to find out exactly what my insurance will cover and I'm going to take full advantage of it. The downhill plunge is going just a little too fast not to take it seriously.
    I will keep my fingers crossed for you! It is hard when the docs are simply being reactive and giving meds for what has already happened instead of trying to be proactive and stop the downward spiral. I know that is how I feel daily. good luck!
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~







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