Memory Strategies

[Brent]

We recently (and frequently) discussed how memory problems go with the territory. So, I thought I would open a thread for people to discuss strategies for mitigating those problems. I'll share mine first:

I am a technophile and spend most of my day on the computer and/or cell phone. So naturally my strategies involve technology. I would say that the best approach for anyone is one that involves working with your normal habits as much as possible. For me, that means using computers.

I discovered that my memory problems have to do with short-term, event-based memories. By "event-based", I mean that if a memory is associated with a short event (such as a brief conversation, an email, or a quick chore), then I am likely to forget it. If the event takes 10-15 minutes or longer, then I seem to be able to remember the details of that event better. For example, if I have a long conversation on a topic, I won't really have a hard time remembering what was discussed, but if the topic only lasted 2-3 minutes, I am likely to have no recollection of it.

Also, I'm finding that I am easily distracted. I'll be doing something, then an idea will pop into my head. Previously, I would sort of put a mental "bookmark" in my mind to attend to that idea later. But, I am finding that if I do not follow up on it immediately (and I do mean immediately), I will completely forget the idea. However, if I do start thinking about the topic, I will immediately forget what I was thinking about before.

I realized that a solution should involve a system of keeping some sort of to-do list for ideas that I want/need to follow up on later. This would replace the mental "bookmarks" that I was used to when my memory worked. Such as system would prevent me from losing important ideas, following up on phone calls, buying things I needed, etc.

However, such a system has to be simple. If it takes me more than a few seconds to deal with, I'll never use it. This is partially because of the inconvenience, and partially because if the interruption is not brief, I will completely forget what I was doing in the first place.

I started jotting notes down on the nearest piece of paper, which worked great for capturing the thought, but was worthless for retrieving those thoughts when I needed to because they were scattered all over the place. So, I started carrying a tiny notebook around. This was fine when I remembered to take the notebook, but it always tended to be in the wrong place at the wrong time.

So, here's what I do. The one thing I ALWAYS have with me is my phone. I used to carry a Blackberry, but I went ahead and sprung for a new Android with a large screen and a slide-out keyboard. Then, after looking at several different apps, I finally settled on one called "Note Everything". It allows me to quickly make text notes, draw on the screen, record a voice note, take a picture and attach it to the note, create a videonote, create a note from a barcode (more handy than you might think), or create checklists. I keep this on my home screen and use it to capture every thought that pops into my head that I think I need to follow up on later. I can also set a reminder (an alarm) for any day/time for any note.

The important thing for me is that the list is all in one place. I don't have multiple lists or a bunch of sticky notes laying around. Every so often I look at the list and see if there is anything I need to or can follow up on at the moment. This bring up my 2-minute rule.

The goal for me is to keep that list short. Most things can be addressed/done in under 2 minutes. If a thing is on the list and I can get it done in 2 minutes or less, my rule is that I must do it NOW. Things like paying bills, making quick phone calls, etc. always fall under the 2-minute rule. Most things that clutter my head can be dealt with in under 2 minutes. This does wonders for simplifying things.

Also, of course, all of my phone and email are in the same device. So, this keeps it simple. Everything is in one place. Also, I have epilepsy.com's seizure diary installed, which is handy. I can track everything I need to and it automatically syncs with the website. I use another app called "Out of Milk" that is a shopping list app that just keeps track of things I need to pick up. I can either type the item or scan the barcode of an item. This automatically syncs with my wife's Android so that if she's out she can pick it up.

Here's another cool thing. Throughout most of the week I live alone in an apartment, whereas my wife lives in our house 2 hours away. (I'm going to school - we're not separated.) Every night I need to take my dog out at around midnight into a private courtyard that is locked except for one door. To get there, I need to take a closed stairwell up/down 5 flights of stairs. It is always a concern that I will have a seizure in that stairwell or out in the courtyard (hypothermia) in the middle of the night and that no one would find me for hours. My dog would alert me, but not necessarily in time to do anything about it.

I recently purchased a device called a "Zomm" which is marketed as a device that prevents you from losing your phone, but it has two important features. It is a Bluetooth device, small enough to fit on a key chain. It has a single button. Press and hold the button for a few seconds and a very loud alarm goes off. Hold it for a few more seconds and it places a call (using the phone) to any number I configure (I use 911, but you could use a friend/relative). The device then becomes a speakerphone and the person on the other end can hear what's going on and speak to anyone in the area.

(I use 911 because if I use the "panic button" it is serious, and also because 911 will be able to locate my position, whereas my wife could not.)

So, this is another reason to carry my phone with me. The problem, of course, is that I am placing all of my eggs into one basket. If my phone ever dies, I am in a bad way until I get a replacement. However, I am very comfortable with technology and am used to strategies for mitigating those sorts of risks.

Sorry for the long post. The condensed version is:

I use my Android for keeping notes on things I need/want to follow up on later. I keep the Android with me at all times. My rule is that if an item on my list can be followed up on in 2 minutes or less, I have to do it immediately.

 

[elizzza811]

I experience memory issues similar to yours, and your strategy of utilizing technology to deal with some aspects of this disease (memory) seems like a good one at first glance, but not when you consider this...

The Freiburger Appeal:
http://www.starweave.com/freiburger/

The number of physicians who have since signed this petition now exceeds 6000. Somehow I can't discount that fact and find the same joy (and benefit) that others find in these technologies?

Sometimes I think my relentless teeth-clenching might be an offshoot of this technology. My neurologist refuses to attribute it to my seizures, so maybe...?...

'Wi-fi refugees' shelter in West Virginia mountains
http://www.bbc.co.uk/news/world-us-canada-14887428

 

[Brent]

The difficulty with these sorts of studies is that they attempt to attribute a wide range of lifestyle decisions to a single factor. For example, one could say that since I use my laptop for 8 hours per day and that I (previously) suffered from insomnia that there was a causal link. However, I discovered that the problem was using the laptop late at night when I couldn't sleep. The problem was not laptop use, the problem was laptop use late at night.

Similarly, for a while (10 years ago) I suffered headaches which, even then, people were trying to attribute to electromagnetic pollution. It turns out, the problem was simply a failure to rest my eyes by looking at other distances.

A few years ago I had tinnitus in my right ear which was assumed to be due to my Bluetooth headset. True enough, it was, but it was due to the physical pressure. When I changed the little rubber earpiece, the tinnitus went away.

My point here is that potentially harmful habits tend to come in groups. For example, bad eating habits tend to accompany bad exercise habits, which tend to accompany bad sleeping habits, etc. It is often/usually difficult to isolate a single cause.

The Freiburger appeal isn't even a study. It's really just a group of doctors saying, "Hmm ... isn't this coincidental?" Here's another problem with the appeal. Google "HFMR high frequency microwave radiation" and mostly what you'll find are pseudo-science sites, mostly that make reference to the Freiburger Appeal.

I don't mean to be entirely dismissive, but we need to be careful about demonizing technologies simply because they coincide with health problems. For example, we could broadly say that declining health coincides with increase TV and/or computer usage, but this has little to do with either of those technologies directly. It has to do with how we modify our lifestyles (less exercise) to accommodate them.

 

[valeriedl]

When I had my very first seizure and was diagnosed with epilepsy I lost about 10 years of memory right off the bat. Graduating high school, vacations and some jobs I worked are gone. There are a few things still up there but they seem to be things that I really loved doing. There was one job that I could possibly go back and work at because I remember so much about it, I really loved it. I find to that most of my dreams are about the things that are still left up there.

At first my short term memory was horrible. After I'd have a seizure I'd loose hours and even maybe days of things that happened before it. I usually blank out during my seizures so I don't know anything that went on during them.

Now my memory will start to fade away after things that happened a few months ago. If someone will explain things that happened during the event I may remember some of it but it depends on how long ago it happened.

I have a palm pilot that I've had for years, I used a pocket calander before I got it. I'd keep a sort of diary on it. I'd mark down things that I may have done during the day, places I'd gone and things like that. I also keep track of my seizures on it and write down what I did during the seizure and how long it lasted.

I mark down medicine changes and if another dr had pescribed any other type of medicine for something else that maybe going on with me. I always make sure I let my neuro about these things during a visit.

There are notes jotted around, but most of them are on the calander or the bullion bord that is hanging up beside the calander. My husband isn't technical/computer person, all he can do on his phone is call people but you can get on the internet and so many other things on it. He doesn't even know how to get on the computer. Doing this helps make sure he know's what's going on, as long as we remember to write stuff down.

 

[elizzza811]

I don't mean to be entirely dismissive, but we need to be careful about demonizing technologies simply because they coincide with health problems.

You bring out some good points, and you're certainly correct in considering all of these factors. Such discretion is certainly necessary in research. But please remember that 'not proven unsafe' does not necessarily equal 'safe' - it just means that it's yet to be proven unsafe, or in some cases, it may not yet have been accepted as unsafe by the majority of those in a position to relay this information to the public and to do something about it.

You're right, this technology may never be proven unsafe, but I think 6000 (and growing) physicians is a pretty good number with dire concerns about this technology to warrant some consideration. They've access to the same studies as 'unconcerned' physicians, so maybe it's just a matter of interpretation? And if that's the case, who's interpretation is right? And is it logical to defend this technology and lean in the direction of its presumed safety when questions remain? Why are we so reluctant to lean in the opposing direction and presume it's unsafe until proven safe? And when you take into account that the only health effects even considered when these devices were first being tested and marketed were those 'thermal' in nature (no heating of tissue = safe), the concerns expressed by those 6000+ physicians somehow gain credibility with me.

You must also remember that most of these studies were conducted using short-term exposures. In other words, mice, rats, whatever were exposed to these unnatural frequencies in bursts similar to what we're being exposed to today over a short period of time. Would the results of these studies be different if these mice or rats were exposed chronically?...like we are today? Would the results of these studies differ if these mice or rats were exposed to multiple sources of unnatural EMFs simultaneously, such as we are today? You can't just discount these possibilities.

Below is probably the best article I've read on the subject. It's long, and it's been a while since I've read it, but it touches on both 'sides' of the argument.

Attitudes to the Health Dangers of Non-Thermal EMFs:
A review of the polarization in attitudes towards research into the health dangers of the non-thermal electromagnetic fields (EMFs)

http://www.es-uk.info/docs/20080117_bevington_emfs.pdf

I should also mention that my ex-husband had a brain tumor removed several years ago. He was a heavy cell phone user, and it was on the side of his head that he'd hold his phone against - so he had exposure to EMFs that way. But he had nosebleeds for as long as I knew him, long before he began using a cell phone. I might be apt to dismiss the possibility that EMFs were at all involved in the development of his tumor if it weren't for the fact that he worked on radar when his nosebleeds began. So he had multiple, chronic exposures - so you have to wonder.

 

[Cint]

I discovered that my memory problems have to do with short-term, event-based memories. By "event-based", I mean that if a memory is associated with a short event (such as a brief conversation, an email, or a quick chore), then I am likely to forget it. If the event takes 10-15 minutes or longer, then I seem to be able to remember the details of that event better. For example, if I have a long conversation on a topic, I won't really have a hard time remembering what was discussed, but if the topic only lasted 2-3 minutes, I am likely to have no recollection of it.

Also, I'm finding that I am easily distracted. I'll be doing something, then an idea will pop into my head. Previously, I would sort of put a mental "bookmark" in my mind to attend to that idea later. But, I am finding that if I do not follow up on it immediately (and I do mean immediately), I will completely forget the idea. However, if I do start thinking about the topic, I will immediately forget what I was thinking about before.

I realized that a solution should involve a system of keeping some sort of to-do list for ideas that I want/need to follow up on later. This would replace the mental "bookmarks" that I was used to when my memory worked. Such as system would prevent me from losing important ideas, following up on phone calls, buying things I needed, etc.

However, such a system has to be simple. If it takes me more than a few seconds to deal with, I'll never use it. This is partially because of the inconvenience, and partially because if the interruption is not brief, I will completely forget what I was doing in the first place.

I started jotting notes down on the nearest piece of paper, which worked great for capturing the thought, but was worthless for retrieving those thoughts when I needed to because they were scattered all over the place. So, I started carrying a tiny notebook around. This was fine when I remembered to take the notebook, but it always tended to be in the wrong place at the wrong time.

My short term memory is bad since I have temporal lobe epilepsy and a damaged hippocampus. I have trouble holding on to a thought for more than a few moments during conversations, so sometimes it may seem rather rude to others if I speak up right away. And I leave out words during emails and sometimes I transpose words, letters and numbers, so jotting down notes won't do any good for this problem. I also purchased a new phone with some of those apps, but the problem for me is remembering how to use them, so I'd rather use my old methods of keeping a small notebook in my purse and jotting down info when needed, along with writing info on my purse calendar and posting notes in my apartment since it's only me living here. Another thing I learned, especially when it comes to remembering names, is saying to myself, "it sounds like" or "it begins with the letter". That helps me a lot.

 

[Brent]

I have trouble holding on to a thought for more than a few moments during conversations, so sometimes it may seem rather rude to others if I speak up right away.

What were we talking about?

Yeah, I know what you're saying. People that don't know me frequently get frustrated because they think I'm not listening to them. People who know me are thankfully very patient. My wife just repeats what she's already said. Often (I don't know how frequently), I recall part of the conversation after she's repeated it, so I know she's just repeating it for me.

Here's a funny thing. Give me a series of words and ask me to repeat them, and I'll struggle or have no recollection at all. However, give me a series of numbers and I'll have no problem at all. This isn't unexpected since my problem is in the left temporal region right at or near the speech center. When I have a seizure, speech is the first thing to go and the last thing to return.

The crappy thing about that is that I am working on my Ph.D. in linguistics. Well, I'm on a leave of absence right now trying to improve my memory problems, but that's my primary area of study. So, having a poor memory for language is a bit of a problem.

But then again, it makes for interesting studies too. When I have seizures around my colleagues, it always turns into a brief and informal study on language formation and comprehension.

Here's another funny thing about me. I have no problem writing down my thoughts. However, speaking is frequently challenging for me except on simple topics. I frequently forget what I was saying in the middle of a sentence, can't think of simply words, etc.

Reading is sort of hit and miss.

 

[valeriedl]

I have so many problems with repeating things to people. I'll be talking to my dad about something and he'll stop me and finish off the story. I say to him "Guess you've heard this before?". He'll say back to me "Yea, this is about the 3rd time now".

I also have alot of problems thinking of simple words. I'll end up having to describe what it is that I'm trying to say because the word just isn't in my head. For instance I'll be thinking of something and I can't get the word out so I'll just say "That furry thing that runs around the house" The person will look at me weird and say "Your cat?"

I'm pretty good at writing things down, but I might just write down a phone number without the persons name. So after a few days I've got this phone number that I have no idea who it's for.

Big event or small event it really doesn't matter, after a few months I forget most or even all of what it was. My friends and family will tell me about things that happend and it's sort of fun sometimes to hear about things that I did and look at pictures, I can usually get a good laugh about it.

One friend told me that we once took a bus to New York. We stole a car there and drove home. I couldn't believe that we did it, espically her doing it with me because she's one of the most down to earth friends that I have. She started laughing when she realized I believed her and told me that she was joking around. I just said that I didn't think we would have done that but who know's I have done some crazy things sometimes, but not that crazy!

 

[Brent]

So, has anyone developed a strategy that doesn't just involve writing things down? (I have the same problem Valerie - writing down information that has no meaning without context later.)

 

[valeriedl]

Sometimes if I can relate the person or thing that happened to a simple word it works.

For instance I'm horrible with names and I met someone who's name was Lilly. He was the one who told me "It's like 'Easter Lilly'." Haven't forgot his name since. There was a resturant that I went too and came out of the bathroom with about a yard of toilet paper stuck to my shoe. I walked clear through the resturant like that, which was a pretty classy one by the way. I really can't remember the name of the place but I sure remember doing that!

If their name might rhyme with something I'll remember it by that, but I usually find a stupid word that it rhymes with. It seems easier that way, the stupider the better. I just have to be careful that I don't call the person by that name though! Also if they look like something or have a certin type of job I'll do the same thing, again just have to be careful not to call them that nickname.

I can never remember my dr's actual names but there's - The girl dr (gynologist), the back dr (chiropractor), the head dr (neurologist), the skin dr (dermatologist), the regular dr (PCP). I can never remember what the dr's actual field of study is I can just remember them by what they do in simple terms. It's really bad because I will go to the dr and they will ask me if I've seen any other dr's recently and when I tell them I'll only beable to remember by their nickname. Luckily most of the dr's think that it's pretty funny, they probably wonder what their 'nickname' is.

I'll usually try to do things like that but most of the time unless I write it down, and make sure I mark down what it is, like I said about phone numbers, I won't remember it.

I know too about what you said if your phone dies. I have the palm pilot and it is a good many years old. It's pretty much got my life in it. I keep track of when my seizures were and what they were like, plus all sorts of other info.

Before a neuro appt I print out a list of all my seizures, one for me and one for my neuro. I keep on them - when the seizures were, how long they lasted and what I did during them. I also print out any other dr's appts that I went to what they were for and if I was given any type of meds. Usualy he asks me that so it's right there for him to see and I don't have to take all sorts of time trying to remember it or finding it on my palm. I give him one set of this info and I print a set out for me that I keep in a 3 ring binder. This way too if the palm or the computer dies then I'll still have all this info in hard copy. The only thing though is that the 'diary' sort of it will be gone.


I always make sure that I keep a list of ALL the meds that I am taking at the time, the doages and what they are for - epilepsy, skin problems, birth control etc. I keep ALL my meds in one place too, so that you don't have to go running around the house looking for all the different bottles making sure you've got them all.

I've got a bag that I keep all my dr info in that I can grab and take to the dr with me, I keep a list in there and one on the fridge. This way if something happens then someone can grab it. It's got my date of birth, any allergies, other types of medical conditions, surgerys I've had done (having you wisdom teeth removed is a surgery) and when they were done or any types of tests that I can't have. I also have my dr's names and phone numbers, the neuro and pcp, on there. There's a emergency contact number, my husband, that way if I'm not with him when something would happen then they would beable to reach him.

Taking care of information for my medical problems I'm pretty good at. It still has to be written down but I make sure it's all there. Everything else I'm not nearly as good. Still have to write it down, but end up forgetting most of it.

 

[Brent]

Another strategy I've recently employed is just getting over my ego and telling people that my memory is shot so they know what to expect. It's not really a strategy for remembering things, but it is a way of dealing with the problem. I'm finding that it simplifies things when others just know not to count on me to remember certain things. Then, I don't have to worry about trying to remember PLUS trying to preserve my self-image on top of everything when I do forget things.

I'm finding that other people are OK once they realize. Then they know it's not personal. It's just the way it is.

But, I feel like that may be somewhat of a cop out - washing my hands of the responsibility of even trying to remember things. I wonder if this doesn't just end up making my mind lazier and lazier.

I was recently accepted into a study that addresses these sorts of issues. In fact, Tuesday was the first session for this, but I missed it (not because I forgot ... though that would have been funny).

 

[valeriedl]

Another strategy I've recently employed is just getting over my ego and telling people that my memory is shot so they know what to expect. It's not really a strategy for remembering things, but it is a way of dealing with the problem. I'm finding that it simplifies things when others just know not to count on me to remember certain things. Then, I don't have to worry about trying to remember PLUS trying to preserve my self-image on top of everything when I do forget things.

I do this too. Someone will walk up to me and just start talking away and I have no idea who they are. I'll just come right out and say "I'm sorry but who are you?" It's better than just smiling, nodding my head and saying yea throughout the whole conversation.

I'll usually tell them I have epilepsy and my memory is horrible because of that. I've learned to get over trying to preserve my selfe-image too because of that. I can't help it, it's just who I am now so I need to learn how to deal with things.