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#1 Irishhh

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Posted 31 August 2009 - 05:30 AM

My memory has never been great, but it's starting to get so bad I almost can't stand myself! I might just be going through a rough period, but I can't remember a damn thing. Like, I know I post on here and then people write back and I forget to respond which is uncool.

Anyway, I forget what I'm saying in the middle of a sentence (which I've always done), but now it's worse than ever. I forget if I've shampooed my hair yet when in the shower, I lose things constantly- always my cell phone and keys. Sometimes I even find myself thinking about what I was TRYING to think of, which gets absolutely confusing. I'm 23 and I already have some kind of dementia! Sometimes when I do drive, I just completely forget where I turn next and have to really think before I get there or I end up being lost which makes me anxious... Plus I have no sense of direction anyway. That part could be due to me taking different routes sometimes to keep from getting bored.

It's like there is a mental shield that just goes up in my mind blocking whatever information I need. Of course, I forget if I take medicine sometimes, and if I text or emailed someone. The other day my friend commented me and I had no idea what she was talking about, but I apparently had wrote her something minutes before and completely forgot. and... there was one more point I wanted to make for sure, but I can't remember what it is!!! Oh, and spelling... I've always been awesome with spelling, words were just always easy for me. Now I don't remember how to spell simple things.. Like the other day I had to seriously think of how to spell pancake!! I knew that pankake didn't look right, but I also couldn't remember what was right. That shield was up in my mind blocking again.

What kinda memory crap do you guys have? and how do you deal? Would a memory supplement help? It's really not working for me when I'm at work. When people interrupt me it takes me forever to get back on track with what I was doing.

#2 sunrisemoon

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Posted 31 August 2009 - 07:11 AM

My memory used to be great...and for some things, it still is. I'd be great at those games where you have rows of cards face down and have to match pairs of animals etc. It's simple things that I get 'lost' on. I forget common words when I'm in a conversation with someone, or have to think hard about where I was going with whatever I had to say. I know I pause a lot and probably come across as vague, but it's like things just take longer to process.

Stuff in the immediate short term is hard. I got a call from a new client the other day. I should have known her name, because she told me and her sister is already a client. I had to make up an excuse today to ask her sister what her name is, because my information retrieval is intermittent. I can get up and walk from one room to the next and wonder what the heck I wanted. I do that frequently. I write down a lot at work, or try to do things straight away, or it'll vanish. That, or I'll remember hours later that I should have done whatever it was. On the flip side, I have super good memory with other things, like phone numbers, car registrations, historical dates, or specific things that happened. It's the randomness of it all that annoys me. I tend to be much better at remembering things I'm really interested in. If I'm not interested, my brain is a seive.

Apart from the mess that is my house, because I have no energy to clean, I'm super organised for the things that I HAVE to be organised about. Anything to do with my personal training business goes immediately into the diary (unless I forget the name before I get the diary open like the other day lol), keys are always in the same spot, phone is always with the keys, the car gets packed exactly the same way. If I have to call someone, I put it in my diary as an appointment and schedule those the same way I would a physical appointment....otherwise it doesn't happen, more often than not. The place I park my car has parking tickets the same as the ticket for the train. I have to keep the train or car tickets in my pocket and check them if I go to my city job, because I sometimes can't remember if I drove, or not. I can't do 'repetitive', but I can do 'structured' and that gets me by most of the time.

I hate that my memory is so bad now. I'm wondering if those Nintendo brain game things might work....except that I can't afford to buy one lol.

#3 Bafflegab

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Posted 31 August 2009 - 09:02 AM

My short-term memory is horrible. Writing notes, numbers, dates, etc., in my date book helps; but, only to certain degree since I often write bits of information that I think will jog my memory, but when I see them at a later date they're usually just pieces of information that leave me wondering what I was trying to tell myself. To relieve me of the stress of forgetting something, I almost always carry a shoulder bag that always has everything I need for mostly anything (iPod and headphones, digital recorder, wallet, keys, glasses, drink, at least one book--in case I'm ever stranded anywhere or shouldn't be driving, datebook, pens/paper, meds, cell phone--although I've found that the cell is often low or out of energy, etc.). For me, the lack of a dependable short-term memory is probably the most debilitating symptom of narcolepsy. If I don't have a notepad and pen or the recorder and I receive instructions, by the time I'm back at my desk I've forgotten what was said and have to ask the person to repeat themselves, which is irritating for everyone. It also makes me look like a fool. If I can't remember something said to me for even two minutes, how can I be trusted?

I've been told by one of the nurses on the Xyrem program that a lot of people who have had success with Xyrem report their short-term memory improving, but by how much is hard to quantity.

#4 napnow

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Posted 31 August 2009 - 09:48 AM

I am so there with you Irishh! I have been a long time sufferer of CRS... Can't Remember Sh*t. I can't remember if I have said something, done something, driving is fun (I end up backtracking a lot). I too have forgotten if I have taken meds, I have shampooed more than once, and flushed the toilet once too many times... which is better than forgetting to flush it Posted Image . I interrupt because if I have a good point I have to get it out or I will forget it, which I know is annoyiong... because if I am interrupted I hate it because I forget what I was saying. I forget names as soon as they are out of someone's mouth.

I have a lot of lists, a lot of folders in a file cabinet, I write down everything on a big calendar in my kitchen (which I look at several times a day). I have to do some stuff right away like pay a bill, fill out permission slips and make appointments for the vet, dentist, and car maintenance well before hand.

Basically I write everything down. Short term stuff, long term stuff, what to pack when I take a trip... I have a small notepad and pen in the car, in my pocketbook, in the kitchen, at the desk downstairs, in my nightstand, at my desk. I have a little box with 3x5 cards in it with the names, addresses, and numbers of all my doctors and other important info so I have it right at hand. I gave up on an address book because I never erased things, I would just write it down on a 3x5 and stick it in the book.

Keeping up is difficult. I have piles of stuff to "go through"... stacks of paper to be filed. I need time to do it undisturbed because if I am disturbed, I forget what I was doing and where stuff goes. So when the kids go back to school my first task it to tackle my office.

I forgot how to spell "of" once. I can't bring words to mind. When this happens I just laugh and say something like "when did I have my stroke?" or "forgive me I lost my mind years ago".

I keep my keys on a hook near the door and my cell phone is either in my pocketbook or charging. I keep my meds in a basket on my nightstand. Every evening I take them out and set them next to my glass of water, after I take them I put them back in the basket. I leave things out to remember that I have to take care of it. Like I will leave paperwork and the phone on the kitchen counter so I remember to return a call or whatever. It drives my border line obsessive neat husband crazy, but oh well.

You will find strategies to help with your memory. Good luck sweetie, you are not alone.

~napnow

#5 Saraiah

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Posted 31 August 2009 - 12:37 PM

It seems that this is the day for PWN to talk about memory problems all over the net! I was literally just on the Daily Strength Narcolepsy forum and posted the following. I'm copying it here in case anybody finds it helpful in inspiring ideas for more methods that might work for you....


I first developed a system for managing my huge memory problems after a severe concussion 3 years ago. I thought I'd describe it, in case it gives you any ideas that might be useful for you. I use a bunch of tools:

1) I use a spiral notebook to keep running notes on what I'm doing and what I'm thinking. At the top of the page, I put today's date and day of the week, so that helps me remember what day it is. I'll do things like write the task I'm trying to finish, so that I can remember what I'm supposed to be doing. When I talk with someone, I'll write down notes from the conversation. And, if I think of something that I need to remember to do, I write that immediately in the spiral. Then, I can transfer the to do item to the right to do list, without forgetting what I just remembered I need to do in the time that it takes me to turn to the right list.
It's important for me to only use one spiral notebook at a time; otherwise, I'll have no idea where to find some note that I wrote down somewhere in 3-4 notebooks. It took me awhile to figure that out.

2) My second tool is a 3-ring binder that I call my "Memory Book." It's got a section for everything that I need to keep track of. I've got a section for a calendar, with one page for every day. I've got sections for notes on medical appointments, how to get places using the buses, bill paying, things I learn about narcolepsy.... And in the to do section, I keep separate lists of what I need at the grocery, or the office supply store, or clothing that the kids and I need... I keep extra blank dividers in the back of the Memory Book, so that if I think of a new section, I can make it right away, before I forget.

3) My third tool is actually the front of the Memory Book binder. I have one of those binders that has a translucent sheet of plastic over the front cover, that you can slip a piece of paper inside. I'll take the piece of paper that is the calendar page for today, which is all marked up with what I need to do when, and stick that right on the binder cover. That way, I remember what I'm supposed to be doing, AND if I'm at work and completely forget what day it is, etc., I can surreptitiously glance at the Memory Book cover to figure it out. And no one else knows that my mind resembles one very blank sheet of paper.

4) My fourth tool is something I just got. It's expensive ($150-$200), but if you can afford it, it's a lifesaver. I use the Livescribe Pulse Smartpen, which records both what I'm hearing and what I'm writing. That way, if my notetaking skills are far exceeded by the talking speed of the person I'm speaking to, I can just take little notes and let the pen record what's going on (with the other person's consent, of course). Then the pen will play back the audio recording starting at any point in the conversation, based on the notes I took at the time. So it's really helpful. The other thing it's good for is that I can record myself talking about things I need to do, and then play back just that particular recording later on.

5) My last tool is a watch made for the deaf and hard of hearing. It shows the day of week, date, month, and time, which helps when I'm so disoriented I'm not even sure of the season. It also has two alarms, which can be set to go off on vibrate, rather than making a noise. I like having the vibration option, so that I'm not constantly beeping at work and announcing to my coworkers that I need a reminder alarm for this or that thing. I've trained myself to look at the binder cover, at the day's calendar page, when the vibrating alarms go off. I set them so that they remind me to go do something I might otherwise forget. The watch also has the option to vibrate every hour on the hour. I use that on days that I'm super-confused. The hourly chime reminds me to look at today's calendar page on the front of the binder, to make sure that I'm doing whatever I'm supposed to be doing, and that I remember whatever comes next.

If anybody wants to try out some or all of a system like this, and wants to kind of talk through it if you get stuck somewhere, I'd be glad to chat about it. It took me awhile to develop a system that really works for me, and it took me awhile to get good at using it. I'm still far from perfect, but I do use it a lot, and it really helps. The system that each person develops is going to be pretty different, since we're all different and we need to do different things.

Saraiah

#6 Nodding Narco

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Posted 31 August 2009 - 08:01 PM

My memory used to be great almost picture perfect but it definitely isn't like that anymore.
I've never and still don't forget things like my keys or phone and although my study is a disaster zone to the untrained eye I can pretty much remember where I put stuff. Where my memory starts to fail me is when I try to remember that guys name from that movie or where was that place that we went to that time and saw that band, What was their name again? I am also terrible with dates and times for appointments and remembering birthdays. My memory is so bad now that I refrain from conversations because I hate not being able to recall what I need when I need it. The most frustrating thing about it is that I know it's there I just can't seem to access it when I need it. Yes I have that mind blank wall too. It's like I need a new indexing system for my memory. If only I could go through and recatalogue everything I'd be fine.

I've never been a Mac girl always PC but I have to say I love my iphone it is my saviour when it comes to reminding me of where I need to be and when. Sorry for the blatant plug. It syncs with the calendar on my computer and reminders can be set to remind me of just about anything I need not to mention the other apps that are available. I also carry a notebook with me everywhere which I write everything and anything in. Sticking to a schedule has never been a strong point for me so I work on time blocks for things I need to get done i.e. study and housework. I set timers when I take my meds so I don't forget whether I took it or when the next dose is. And yes I have mountains of paperwork to go through too so when it comes to keeping my study work organised I use OneNote personally the only thing I think I can say Microsoft did well. It allows me to clip, cut and paste from anywhere and keep everything in the one place it also works with the calendar on my computer and phone to keep me up to date with assessments. I'm pretty sure google notes works in a similar way if you have a gmail account and don't have an aversion to google.

Yes I know I'm a gadget girl, sorry for the plugs but these are my tools and some of us need all the help we can get.
The other thing is I think in pictures. So I love that my phone takes pictures and I carry it and my camera with me always. A picture is worth a thousand words or so they say.

And yes I forgot this bit so adding it now
One theory, keep in mind gravity is a theory, about why we dream is memory consolidation. So for those of us who have crazy intense dreams or those of us who don't thanks to drugs are going to be affecting our memory fullstop. So what I want to know is how are we affecting our memory? Is it permanent or can it be reversed? Are narcolepts memories bad just because we are tired all the time or is it because of our altered dream state? And if I can dream almost the instant I fall asleep how come my memory isn't better?

#7 sunrisemoon

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Posted 31 August 2009 - 10:57 PM

Nodding Narco, are you coming to the conference in October, here in Melbourne? (http://www.nodss.org.au/narconf09.html) There's a presentation on memory and attention.

(Oh, and I saw you posted a note to me while I was overseas...but I keep forgetting to respond LMAO!)

#8 Nodding Narco

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Posted 01 September 2009 - 02:07 AM

Nodding Narco, are you coming to the conference in October, here in Melbourne? (http://www.nodss.org.au/narconf09.html) There's a presentation on memory and attention.

(Oh, and I saw you posted a note to me while I was overseas...but I keep forgetting to respond LMAO!)


Yeah I saw what it was about and i'd love to but not too sure funds will stretch that far i know theres some cheap plane tickets around at the moment i'll try my hardest
It's so nice to finally have some sort of dialogue with another aussie narc
Cheers sunrisemoon you aren't the only one XoXoX

#9 Stacy D

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Posted 01 September 2009 - 05:18 AM

My memory story is the same as the rest of you. I used to have an awesome memory, but now both short- and long-term are shot. I'm especially good with numbers. I could memorize credit card numbers and I had the VIN from my car memorized several years back. Lately I've noticed I have a really hard time recalling phone numbers. I can remember the area code and last 4, but not the middle 3. It's weird. I also frequently forget what I was saying mid-sentence and have to ask someone what I was talking about. I used to think in pictures, if that makes any sense, and that helped me remember things - I could visualize them. I can no longer trust that my "memories" weren't just dreams. I also seem to be unable to access my memory. It's like I hit a roadblock in my brain anytime I try to think about something.

I used to memorize everything, never had lists. I would do food-runs for work and remember the orders of at least 6 people including special requests.

Now I rely on my Palm Pre to keep me straight, but sometimes I forget to put appointments in there if I don't do it fast enough. I also try to have my handy-dandy notebook and pen at all times, but like bafflegab I sometimes often can't figure out what I was trying to tell myself. There is a cryptic note on my desk right now that I vaguely remember writing but I can't figure out what it says or when or why I wrote it. I'll leave it around a few more days and then chuck it. It's got numbers so I hope it's not important.

Saraiah, I was actually thinking about starting some sort of memory book today. I don't usually like to have more than one tool that does the same thing, but now I really need to. The palm is great but I usually forget that the information I need is there. I thought with a memory book with me I can have printouts of calendars and reminders to check my to-do list. I have to remind myself to remember. (I think this is the only place I could say something like that and it makes sense)

It's weird, I was thinking about long-term effects to my memory yesterday. I was wondering if I will be more prone to dementia or alzheimer's. I think I need to do more research on those.

I may have misunderstood what was posted below, but if the purpose of dreaming is memory consolidation, what if we run out of room in the memory files because our excessive REM is being filed as a memory and kicking out the important things?

#10 Stacy D

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Posted 01 September 2009 - 02:10 PM

Here's something interesting: Dementia with Lewy Bodies

Has anyone heard of this or had a doctor mention it?


#11 Irishhh

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Posted 02 September 2009 - 09:50 PM

Thank you all so much for replying with your ideas and ways to deal. I think you all have really great ideas and coping skills. I'm so glad I posted this! and look at this, I'm remembering to respond! haha...

I used to carry a notebook with a planner and all, but I quit carrying it. I am now trying that again and I'll let you know how it goes in a week or so. I also really need to get organized in my home. If I can do that (like I used to) I will be much better as well.

Also, I'm trying out that ginko biloba or whatev its called. I have no idea if it will help, and I've heard good and bad about it, but I'm trying anyway.

Oh, and the problem with my keys and phone is that I just don't realize I'm putting them down. I do it all the time, or forget to put them down and take them with me wherever and leave it without knowing I've let go. I don't really think I can do much about that other than try to make a more conscious effort to be aware of what I'm doing... but I guess this is automatic behavior I'm doing? It's definitely a good idea like some of you said to always put certain things in a certain place, that might help! If only i can get myself to just stop putting things down without knowing I'm doing it.

Oh well... Another thing to cope with! I hope you all continue to do well and better with your same issues! Good luck to you all and thank you so much for always being here when I need it!

#12 dozingdianne

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Posted 12 December 2009 - 08:29 PM

I used to be really good with directions but now I can't remember where anything is. It is so frustrating and very irritating to my family.

#13 Lucestrife

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Posted 27 June 2011 - 11:33 PM

FWIW, I think a lot of these problems are exhibited by folks who are undergoing periods of exhaustion as well. It may not be anything other than fatigue that you're having to deal with, and that's comforting in a way I guess.