ltanyaperry

Memory Loss, confusion and/or word finding

57 posts in this topic

I are a jeeneus two... last testing was 185 I.Q., but, pfft, I feel so stupid sometimes from the malaise that washes over me for no particular reason.

Proud, but embarrassed, member of Mensa :blink: -- But I am coming to grips with feeling like an impulsive, drunken idiot most of my waking hours. But, at least I have an hour or two a day when i can feel "smert" (as my kids like to put it) B)

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I love that we are all geniuses and such but I want to remind you guys that the whole "IQ" system is seriously flawed. Anthropologist actually despise the entire concept at all. The questions and the scoring on those types of test are specifically geared towards the western culture and society. Say for example, two people take this test one is from the mountains of Peru and the other is from Nebraska. They are equally able to gain and retain knowledge and have done so over many years, yet because of the structure of these test, Nebraska dude is going to look brilliant and Peru guy is going to look like a total idiot.

You can even seperate this by class even, both people are from New York City, one was raised in a higher class home, the other raised inthe streets barely getting by.... Again, both are the same, yet "IQ" would say the person in higher society would be smarter, than the person who has taught himself to find food, avoid danger and make shelter for himself. These things are clearly more important than going and getting a library card trying to keep up with others who were more fortunate.

Do you see what I am getting at?

Im not saying that you guys are not as smart as you think you are, because the testing was made with you in mind, it works perfectly.

I'm only bring this up because IQ test are one of my many many pet peeves and I wanted to share this information with you. It's just something to think about you know? How screwed up our world is in yet another way!!! lol.....

I'm needlessly rambling again... my apologies.

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Wow, you must be smerter than everyone if you can ramble without using your mind at all! J/K :lol:

Very good points -- I was hoping the sarcasm was shining through my earlier reply, because I too actually don't put much merit into it. Geez, I went to one gathering of brainiacs many many years ago -- most are a strange breed, and no, most, I don't think could balance a checkbook, but they could talk your ear off about metaphysics, rotfl.

But, back to point -- I have seen a trend with "our group": Artistic, Intelligent, Free Minded. One of the "perks" of the condition I guess. Having rem bleed into the wakeful state allows us to think outside the box and therefore appear to be smarter, more creative and more open to new ideas and concepts.

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I stayed in Milwaukee on Sunday night and went out to dinner with a few folks from the conference.

One of my dinner companions mentioned the exact same thing -- he said that everyone he interacted with this weekend seemed to be very intelligent.

I think that we have had to struggle and adapt our lives to meet society's expectations, so we are uncannily creative. Even if not "artistically" creative with painting or music, we are able to devise innovative ways to survive and get things done -- that's quite an accomplishment, and certainly takes brains.

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Wow, you must be smerter than everyone if you can ramble without using your mind at all! J/K :lol:

I actuallly rarely use it... I think it is there to keep my skull from caving in...

Very good points -- I was hoping the sarcasm was shining through my earlier reply, because I too actually don't put much merit into it. Geez, I went to one gathering of brainiacs many many years ago -- most are a strange breed, and no, most, I don't think could balance a checkbook, but they could talk your ear off about metaphysics, rotfl.

OMG that is SOOOOOO me! but still I'm not a brainiac? Hmmm maybe I am a closet brainiac.... stiil very funny!

:: joins Chuck on the floor::

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I wanted to say I noticed much of the same this weekend. Everyone I met was very intelligent... even if some might have been in the closet about it... they didn't fool me! I agree with you all... we seemed to be intelligent and creative. Thinking outside the box is such a wonderful thing to be able to do!!! I guess I did pick the right major... engineering... intelligent and creative... PERFECT! Although there is still the challenge of graduating lol!

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Well, I really am the door knob of the lot. My point was that it is all gone now. Most folks treat me like a babbling fool. I somehow lose track of words somewhere on the trail from memory storage to mouth. The doozy is forgetting everything. The past couple of weeks were very hard for me emotionally, and maybe I expressed more than I should have. Alas, another flaw of mine is the loss of judgement when it comes to "sharing." I am constantly reminded that others really don't care, which is why I joined NN. Maybe I expected a bit more thoughtfulness here; I've really needed some understanding. I can't say that I appreciate the sarcasm.

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Well, I really am the door knob of the lot. My point was that it is all gone now. Most folks treat me like a babbling fool. I somehow lose track of words somewhere on the trail from memory storage to mouth. The doozy is forgetting everything. The past couple of weeks were very hard for me emotionally, and maybe I expressed more than I should have. Alas, another flaw of mine is the loss of judgement when it comes to "sharing." I am constantly reminded that others really don't care, which is why I joined NN. Maybe I expected a bit more thoughtfulness here; I've really needed some understanding. I can't say that I appreciate the sarcasm.

I can say for myself for sure that I had no malicious intent towards you. None at all. I and I seriously doubt anyone else did either. I was just just trying to express the fact that I feel IQ's are not how we should be judging people, therefore I don't feel what your IQ was before compared to what it is now, Should be anykind of judge of how smart you actually are. I'm not sure how you felt that was sarcastic, but I apologize if I came off like that. I have never sense that you were a babbling idiot! And I think it is incredibly insensitive of your parents to act like that. Perhaps they are in need of more education on how our brains work.

I completely understand how you feel with your symptoms developing how they are. It is incredibly frustrating. Really. Some times I feel so defeated when I run into a friend who was very close to me in HS and I just cant seem to remember their name. I also am incredibly frustrated that truly awesome people I met over the weekend are mere faces to me because names just dont stick anymore you know?

Please dont be upset with us, I'm not quite sure how we came off as insensitive, but apparently we did. And I sincerely apologize for that. don't be frustrated... really we are all in the same boat with this problem with our memories, and the way our mind work. Some of us just handle it diffrent than others. Myself included. I'm sorry that you are having such a hard time with it. I wish I had some kind of advice to give you, but I don't really understand the whole thing either. we are listening to you... we just don't know the answers that we are all looking for.

There is definately sympathy and compassion for you here.

You are very important to us as are all of our members..... our family.... here online.

~Marcia

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Well, I really am the door knob of the lot. My point was that it is all gone now. Most folks treat me like a babbling fool. I somehow lose track of words somewhere on the trail from memory storage to mouth. The doozy is forgetting everything. The past couple of weeks were very hard for me emotionally, and maybe I expressed more than I should have. Alas, another flaw of mine is the loss of judgement when it comes to "sharing." I am constantly reminded that others really don't care, which is why I joined NN. Maybe I expected a bit more thoughtfulness here; I've really needed some understanding. I can't say that I appreciate the sarcasm.

Sleepless,

There's no such thing as expressing too much. This online community is here for you to share with your fellow pwn's -- and you have done so candidly, honestly, and genuinely. Don't sell yourself short.. your points have been made in your posts, and you've brought up subjects that cause others (me included) to think further.

I think somewhere in this thread the focus was lost. You were talking about how frustrated you feel about a cognitive decline, and somehow the comments morphed into talking about N and intelligence. The two aren't mutually exclusive -- you're definitely NOT a "doorknob" to us here -- and it seems as though many feel that when faced with obvious cognitive challenges, pwn's are able to come up with creative solutions. The way you've expressed yourself here in the forums is a real indicator that you are one of those creative thinkers, even if you are feeling challenged in some of your day-to-day interactions.

Please get us back on the right track here. What do you need from this community in the way of support about memory loss, confusion, and/or word finding? We are here for you.

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And please don't take my sarcasm as insensitivity to your feelings either, Sleepless! My replies were my way of saying "I.Q. doens't mean anything; it's just a number". So, pfft, everyone is smart in their own way - some in pragmatic ways, some in creative ways.

I too feel EXTREMELY frustrated that yes, even though I have an extremely high I.Q., I DO feel like an idiot half the time because my memory fails me so often these days. I often wonder to myself if in fact I may not have narcolepsy at all, but rather, alzheimer's because of the memory problems, the impulse control problems and the fact that even the other day, for a brief moment, I did not even recognize my own wife!!!

I feel like my brain is being ripped apart. I have moments of lucidity where I wonder if anything is "real" anymore. But I draw myself back in the realization that I am what I am - I cannot change that - what I can change is how I deal with it. I have always been a fighter - I have always found ways to adapt - and I *will* find ways around my memory problesms: writing things down more, writing schedules, educating those around me about my condition; asking for patience and understanding, pacing myself, and so on...

Trust me - everyone here understands your original post. Take each of our replies with a grain a salt. We all have different ways of coping. Take only what you find of value to you, but please do not reject all because of a post or two!!!

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I am going to add a sister Topic for this thread. The goal will be so that here is where we vent our frustrations, and do our best to console each other, but the other one is for suggestions and ideas we may have for overcoming our problems with memory. So please keep an eye out for it I hope this will be a help for all of us....

~Marcia

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Again I don't think any of us meant to be rude. We all are struggling with this problem. I personally don't take it as a joke. I was academically dismissed from school and spent the entire summer trying to get them to let me back in... only to feel like its going to happen again.

I think people just try to joke to deal with their frustrations. It can be a coping mechanism for many people... myself included.

I DO understand how hard this is. I went from an A student ready to graduate in mechanical engineering to being kicked out of school. I TOOK INTRO TO ART HISTORY 4 TIMES NOW!!! I need to be able to laugh about that, or I would have no way to deal with it.

Keep posting and try to understand we are all very sorry if we offended you. It was not at all the intention.

I'm so glad to have met you all... sorry I just have to keep saying that, because I can't even begin to explain just how glad I am to have met you guys!

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Thank you all so very much, and please forgive me for expecting the worst. I've lost almost every friend in past few years because of my sleepiness, and I think that I've just grown cynical. Everyone of you are amazing.

Marcianna, I didn't mean to say anything negative about my parents. I'm one of the few people that I know that actually thinks they had a good childhood. Warped, but good. I've made a few posts that might reflect badly on my daddy (I still say daddy), and yes, there were times that weren't great, but I am so very thankful for them being who they were and that they were mine. They've both passed away - brain tumors. I really wanted to address this because they really did mean so much to me, and I absolutely didn't want to convey anything otherwise. My father was so incredibly eccentric that I may get off on a tangent about something that he did or said, which taken out of context (easy to do w/ me) might sound harsh or bizarre. My mother was truly one of the best people that i"ve ever met.

Anyway, thanks to all.

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My father was so incredibly eccentric

As a dad who believes that he is fairly quirky (even without the narcolepsy factored in), I don't think higher praise could be offered. My dad certainly is bizarre in his own ways, and I know that I am wonderfully eccentric. I can't help but think that your father smiled in heaven the moment that you typed this. I also love that you are able to see all of the good things that your parents did and are also able to recognize the frustrating things too. The older I get the more I realize that I love my parents' "faults" as much (if not more) than their strengths.

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Thank you all so very much, and please forgive me for expecting the worst. I've lost almost every friend in past few years because of my sleepiness, and I think that I've just grown cynical. Everyone of you are amazing.

Marcianna, I didn't mean to say anything negative about my parents. I'm one of the few people that I know that actually thinks they had a good childhood. Warped, but good. I've made a few posts that might reflect badly on my daddy (I still say daddy), and yes, there were times that weren't great, but I am so very thankful for them being who they were and that they were mine. They've both passed away - brain tumors. I really wanted to address this because they really did mean so much to me, and I absolutely didn't want to convey anything otherwise. My father was so incredibly eccentric that I may get off on a tangent about something that he did or said, which taken out of context (easy to do w/ me) might sound harsh or bizarre. My mother was truly one of the best people that i"ve ever met.

Anyway, thanks to all.

I think Narcoleptics should some how trade mark the idea of Cynical. As we have all gone through that stage... some of us longer than others. I think that is how we develop such sarcasm...

I am very glad to hear you were lucky enough to have a good childhood. The thing is if you don't know whats wrong, then people dont know how to deal with us... I'm sure they did the best they could. Most parents do.

As far as losing friends, I can understand that too, but I am blessed enough to have made new ones through this site. And they mean more to me than anything. :wub:

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Wow! That is HILARIOUS and also freaky, it happens to me, too.

I've been wondering for a while now about my "word swapping". I don't know what else to call it. Years ago, I stopped using cliches in conversation, because 80% of the time I would swap crucial words with one that was way out of context. Or combine two cliches to form one weird new cliche! Lol

For example, in reply to a joking slight, in mock indignation I said,

"What am I, sliced meat?!"

(Yes I really said that. I believe the correct phrase is, "what am I, chopped liver?")

I have a clear memory of when I was a kid (10? 12?), sitting at the table with my dad and little sister. We all hear the same familiar sound/ signal. I say brightly,

"Better get that, it might be the phone!"

They roll with laughter. It was the microwave. A dinner item had just finished cooking.

I remember feeling confused at first (what did I say?), then embarrassed, and then, thinking sure, it is kind of funny. I still don't know if I thought it was the phone ringing, or if I just used the wrong word for microwave.

Incidentally I often transpose words that I hear or see written. Sometimes a key word or sentence gets translated in my brain into something really graphic/ inappropriate (I'm not making this up, really).

I've trained myself to just look again or ask the person to repeat what they just said. Instead of saying what I think they said, which can earn me really weird looks. Unless I'm with a friend who thinks it's funny...then I'll go with it and we can both have a chuckle. Fortunately the word swapping is usually G-rated.

Last week I asked the butcher to cut me 8 sirloin steaks, 8 inches thick each instead of 8 ounces each. His look was hilarious <img src="style_emoticons/<#EMO_DIR#>/laugh.gif" style="vertical-align:middle" emoid=":lol:" border="0" alt="laugh.gif" />

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I can't find the right words sometimes, and I am known to also put the wrong word in a sentence. This is especially troubling during work meetings. "Patient is hypoglaucoma..." "You mean, hypoglycemic?" "Yeah, what did I say?"

The best, though, is coming home from the grocery with random things. I SWEAR I grabbed canned green beans, but what's in the bag is canned brussel sprouts. My husband actually kind of likes unpacking groceries with me now, because you never know what you're going to find!

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I've done all of this over the years. The most severe is when I start to get a tick, where my head jerks and words come out repetitively, or sentences come out sometimes even in rhyme. This, I can say, has never happened in front of anyone else. But the slurring, the total subject change, the not knowing the word, feeling drugged, going into mini dreams while in conversation (haven't had that for years), I've had it all.

Last summer I was grocery shopping and was very drawn to a vegetable (yes, this has to do with the subject at hand. Ha ha!). Anyway, I got it home and didn't know what to do with it, so I juiced it. It was certainly refreshing, although a bit bitter. Something was happening though. I was having a bit everyday, and noticed, my veins were being cleaned out, and for a few days my cataplectic attacks were happening frequently, but knowing I was getting detoxed, I kept going to see what this thing was doing.... a week later, I wasn't having any cataplectic symptoms when I normally would, so I looked it up online. First I had to find out what it was, and found out it was bitter melon aka balsam pear. I read a lot about it, and the one thing that stood out was that it helped auto immune disorders. I kept taking it, and within three weeks the cloud was being lifted from my head. I've been learning French for 10 years and suddenly the French was sinking in, without tons of repetition, my mind was sharper, I was remembering words, no more ticks, I was able to stay focussed, there wasn't a haze I didn't even realise was there all these years that I had apparently gotten used to,I didn't experience any more slurring, or that drugged feeling. Even my night time sleep like it actually worked - I was bright eyed abushy tailed within 15 or 20 minutes after waking ... The one thing it did not do was help with the actual narcoleptic attacks, but with the rest gone, I was accomplishing things without thinking about it.

One day, I ran out and wasn't able to get more for a few days, and within 2 or 3 days I started getting the shakes (my warning sign to slow down, or else I'd have more serious cataplectic attack), I wasn't able to think of words, and the haze was back, only this time was very apparent. Within 4 hours of taking more juice, everything went back into place!

Anyway, I wanted to share this with all of you - maybe I'll copy and paste it into the "treatments" area. All I can say is, my mind is feeling as sharp as it did 20 years ago, before my symptoms began, and it's given me hope in so many ways.

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I was just diagnosed with N about 6 mos ago. I have been misdiagnosed for over 10-15 years. I wanted to know if anyone has experience memory loss, mind cloudiness, and most of all word finding? I am a trainer. For years I have dealt with pushing myself to keep going. However, as I am getting older(30 with 2 children) I feel like I am going to pass out. I was put on provilgil. It did good for a couple of days then I got sick everytime I would take it. I cut down on my dosage. I am struggling now bc I am having huge issues with performing at work. My work ethnics are very high! Therefore, when I started to have problems typing a simple email. I knew this was a big issue. I am out on leave now, however, my Dr is referring me to another Dr bc he don't understand why I am having issue speaking/word finding, etc. I was in class one day and I opened my mouth to say something and nothing would come out of my mouth. As bad as I was trying to get it out I couldn't. It continued everytime I would talk. I wanted to see if anyone else has experience anything like this?

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Hi, I am new to this forum but, not to Narcolepsy/Cataplexy. I think the memory loss is one of the hardest things to deal with. I am an EEG/Sleep tech. by trade from the age of 19 on. I am now 51 on disibility. The hospital pretty much said don't let the door hit you in the ass on the way out! Loyalty, Right! I took the exams to be registered 3 times. I either slept thru them or couldn' d remember the answer. So, the memory loss /can't remember the word symptom goes right along with tha nasty word Narcolepsy. I hope this helps, unfortunately there is no cure YET! Take Care, Lori

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I'm having this problem, although I just started Xyrem and I take 20mg of Adderall XL, all of my symptoms have been getting much worse and still are. I feel like I can't think straight, can't speak a full sentence, find the right word, etc. I constantly forget what I'm doing or where I put something.

My car, house and purse are all jumbled messes full of prescription bottles, supplements, and coffee mugs....

At work, all I can do is sit here at the computer and zone out. I can't seem to finish my projects because I can't even think about them or remember to do them. I am so bad I went to a neurologist (before the N diagnosis) and got a brain MRI, which is normal.

If it keeps up, I'm going to get fired. What should I do? How do I tell my doctor this? I'm newly diagnosed, and have only had time to discuss symptoms, not their effects on daily life. On another post, someone recommended that they have their psychiatrist write them out of work on short term disability while they straighten out the meds. Maybe I need to do this too.

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I often find myself yawning or forgetful when I'm conversating. It seems rude like if I'm not paying attention. But I am and I eant to. I think that its a microsleep or something because I don't recall what I was about to say. Its embarrassing and very frustrating. At work I feel that throughoutv the years. N vhas become worse. I feel so foggy,unable to concentrate or frespond at times. I really feel so stupid at times I can't. Help myself. Does anyone else feel like this?

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I often find myself yawning or forgetful when I'm conversating. It seems rude like if I'm not paying attention. But I am and I eant to. I think that its a microsleep or something because I don't recall what I was about to say. Its embarrassing and very frustrating. At work I feel that throughoutv the years. N vhas become worse. I feel so foggy,unable to concentrate or frespond at times. I really feel so stupid at times I can't. Help myself. Does anyone else feel like this?

This is happening to me too. I just drift off, or micro sleep or whatever. But when I am really awake and trying to think about something or talk about it, it still gets all messed up. I used to be a good communicator, now I'm just ....blah.

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Bad thing is that is effects all of our relationships, working, and just daily living. You forget to do things, forget things youve done so you do them twice.. I'll pay my truck payment twice and then ill forget to pay it. I have no idea what im doing anymore. The woman I was with i was so happy and then she just had enough. Everything just got screwed up over me not being able to remember what i've said and not said so it makes me untrustworthy when the truth is i am very trustworthy i just cant keep track of things.. So now a days i just kinda keep to myself so there are no mis-communicaitons but I tell ya the depression is reaching levels that I cannot handle anymore. If dealing with something as easy as narcolepsy ( i mean seriously how hard is it to just give someone the benifit of the doubt its not like i have some kind of horrible illness that is taxing on others) then how can i ever be with anyone?

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