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9/20/2014 12:39 pm  #11


Re: The Memory and Cognitive Issues Thread

My memory is so bad that I no longer work, but the last job I held was at a cel phone store. I was initially hired as a customer service agent, but I couldn't learn the computer program. Granted, it looked like some sort of thing written in one of the lower circles of hell by a particularly malicious imp, hah, and it wasn't intuitive, and there were many codes and exceptions, etc. to memorize, but I just could. not. do. it. I was finally moved to the position of store greeter.
I couldn't do that, either. I couldn't remember the customers' names. I wrote down names, but couldn't connect names to faces. Faces weren't enough, so I developed a secret code to jot down on my clipboard next to each name so I knew what the customers were wearing so I could connect them to their names and thus what they were in the store for, which worked fine when it was slow, but on busy days or if families/multiple people at once came in, I couldn't manage.
I could not learn the names of the cel phones other than the very most popular two or three (Razr, anybody? and doesn't that just date this, though) let alone their various features, and that was compounded by the fact that of course new phones would come in all the time while old ones were retired, and I just.
And no matter how frantically hard I tried to keep the customers straight, every once in a while I would forget someone/they'd fall through the cracks, and they would be understandably pissed off. (the wait time to get to a sales rep, customer service, or repair could be long) Customers would come up to me to just chat while they waited, and I would have no idea who they were/what they'd come into the store for, never mind that they'd just given me their name and reason for coming in shortly before. Another situation I dreaded was a chatty customer asking for recommendations on what phones to consider. I couldn't remember what the phones -did-.
And, of course, people get mad and take it quite personally when you can not remember their name.
All day, every day, was tense as I strove both to compensate and to conceal the fact that I -had to compensate at all.-
After about five months of this, I gave up. I quit the job, I wasn't fired. I have not tried to work since.
I do alright online; I know my posts come across as the ordinary writing of a normal person, but the truth is that's because when you write a post (as opposed to talking face to face in real time,) you have as much time as you need to tweak, polish, edit, and google the names of things.
I didn't always have a bad memory. I was cognitively normal up until around the time I was in my late twenties, and then, for no reason, my memory started to fade. I did not know my mother well at -all-, but I do know she had memory issues, too, to the point where she would forget to feed us kids, or change diapers. (She was out of my life after my kindergarten year, so my memories are vague.) I assume what's afflicting me is the same thing she had, but there's no way of knowing. I spent a couple-few thousand on cognitive testing in the last few years, and while they were able to confirm there is a problem (Naw, -really-? LOL ) they weren't able to give me any kind of actual diagnosis. I am waiting for it to get a little worse, and then I will head off-island to one of the big name cognitive care places for -their- testing (testing on Maui is really limited, they just don't have the equipment here...)
I am making necklace and bracelet sets for Creepy Coconut, and it is frustrating trying to count the beads. I notice that once I count into the twenties, I am liable to just completely lose the number I was on, - and it is gone completely, absolutely vapor - and have to start counting all over again.

 

9/20/2014 1:12 pm  #12


Re: The Memory and Cognitive Issues Thread

Wow. That sounds much more difficult than the cognitive issues I have to deal with. Suggestion for counting the beads-- could you count them in groups of ten, then set them aside? Then when you have enough groups of ten to make the project, you could do what you need.

My memory issues (when I'm not dealing with adjustments to my medication) mainly have to do with sequencing and working memory. Like, if someone gives me directions, I will remember some of the steps, but not all, or I will remember all of the steps, but not in the right order. Depending on what the issue is, this can be quite problematic. At my tech job I'd run into big problems because I did steps in the wrong order-- that can really screw things up. My solution is mainly to write *everything* down with very detailed, step-by-step cheat sheets. Often cognitively typical people will get irritated and say "Oh, you don't need to write that down." What they actually  mean is that *they* wouldn't need to write it down. I do!

About a year and a half ago I went through a battery of cognitive and psychological testing to confirm the diagnosis that I'd known for years-- Autistic Spectrum Disorder (more specifically, Asperger's, but that's no longer in the DSM). I found out that while my IQ in general is, um, quite a bit higher than average, my working memory is like what would expect of someone with an IQ below 70. Those extra IQ points get used up compensating for that.

I currently work at a non-prof that advocates for people with disabilities, which is fantastic because they understand that I need accommodations for both the epilepsy and the Asperger's-- both the social and cognitive aspects. No one expects me to pick up on "feedback" given via facial expressions, and no one hassles me about needing directions in writing and taking detailed notes.

Mirenithil, I hope that in the future you're able to get a diagnosis, so that you can at least know what's going on. It's possible that there may be specific therapies that could help. Propagnosia (inability to recognize faces) is a fairly specific symptom, which makes me think that they might be able to figure out what parts of your brain aren't working and why.


My girls: Kirsten Johanna Larson (c. 1854: Ryd, Sweden/ Minnesota), Olive Leah Fonseca (c. 1887: East London, UK), Eva Marie Graff (c. 1926: Upper Michigan)
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9/20/2014 2:06 pm  #13


Re: The Memory and Cognitive Issues Thread

ellaweasel wrote:

Wow. That sounds much more difficult than the cognitive issues I have to deal with. Suggestion for counting the beads-- could you count them in groups of ten, then set them aside? Then when you have enough groups of ten to make the project, you could do what you need.

Yes, perfect. I do count them in tens sometimes, but not always. I should do it for every set, so that I only have to re-count ten beads when my brain vapor locks. haha

ellaweasel wrote:

My memory issues (when I'm not dealing with adjustments to my medication) mainly have to do with sequencing and working memory. Like, if someone gives me directions, I will remember some of the steps, but not all, or I will remember all of the steps, but not in the right order. Depending on what the issue is, this can be quite problematic. At my tech job I'd run into big problems because I did steps in the wrong order-- that can really screw things up.

Yikes! (Do you cook? I bet that makes preparing anything an interesting challenge, too.) Yeah, I never have the problem with the steps out of order thing; when the fog hits, I just tend to lose everything beyond the step I'm currently on (and more often than I am really comfortable with, that will evaporate too. grrrrr.) Notes are a -godsend-, and grocery store lists are mandatory. We should buy stock in the Post It Notes company. heh

ellaweasel wrote:

My solution is mainly to write *everything* down with very detailed, step-by-step cheat sheets. Often cognitively typical people will get irritated and say "Oh, you don't need to write that down." What they actually  mean is that *they* wouldn't need to write it down. I do!

Yes. Exactly. So much exactly this. I have long since come to accept that for the enormous majority of people out there, unless they have direct, firsthand experience of this kind of thing, they can not grasp what it's like, so they have no empathy for a problem they do not really think exists. (It's that whole "It's not a problem for me, therefore it's not a problem for anyone" attitude that is a cause of so damn many of the societal problems we talk about on this forum)

ellaweasel wrote:

About a year and a half ago I went through a battery of cognitive and psychological testing to confirm the diagnosis that I'd known for years-- Autistic Spectrum Disorder (more specifically, Asperger's, but that's no longer in the DSM). I found out that while my IQ in general is, um, quite a bit higher than average, my working memory is like what would expect of someone with an IQ below 70. Those extra IQ points get used up compensating for that.

That's a really interesting array of scores. I'm glad you have the extra mental horsepower. My test showed a similar wide scattering, too.

ellaweasel wrote:

I currently work at a non-prof that advocates for people with disabilities, which is fantastic because they understand that I need accommodations for both the epilepsy and the Asperger's-- both the social and cognitive aspects. No one expects me to pick up on "feedback" given via facial expressions, and no one hassles me about needing directions in writing and taking detailed notes.

I appreciate very much that you do that. The world could use more compassionate, articulate people like you doing what you do.

ellaweasel wrote:

Mirenithil, I hope that in the future you're able to get a diagnosis, so that you can at least know what's going on. It's possible that there may be specific therapies that could help. Propagnosia (inability to recognize faces) is a fairly specific symptom, which makes me think that they might be able to figure out what parts of your brain aren't working and why.

Thank you. I keep a written list of specific memory loss incidents (because, surprise surprise, if I did not write them down, I would forget them.) The intent is to have documentation for the doctors.
Heh. I can post some of the more irritating or entertaining incidents, but the whole list is too long and boring. (I very much prefer to find the funny in this, and laugh about it, every time I possibly can.)
 

 

9/20/2014 2:27 pm  #14


Re: The Memory and Cognitive Issues Thread

Does anyone else here use Goal-Fish? I've been using it for chores and stuff (particularly the cleaning of rooms) because I don't like having to expect my mom to write a list (she's nice and does it, but yeah), and my dad's always like "what don't you get about 'clean x room'?" (Um, everything? XP)

I've also used these autistification strategies (so called because the blogger is autistic, but beyond the first one, they're mainly memory and time-management helpers) once upon a time--mainly the chore and grocery ones a few years ago until the room I was in got hot and made the adhesive on the velcro give out--and I've been meaning to try the homework wall, since I royally suck at remembering homework and I know I'd at least think of remembering it if it was all on the wall behind where I sit my computer. XP


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9/20/2014 3:16 pm  #15


Re: The Memory and Cognitive Issues Thread

Mirenithil wrote:

Yikes! (Do you cook? I bet that makes preparing anything an interesting challenge, too.)

Actually, I love to cook, but I have a system worked out for that. If I'm following a new recipe I break the steps from the recipe as written down into smaller steps (because each step in a cookbook usually consists of several sub-steps, really), and recopy it by hand. Then I put a checkmark next to each step after I complete it. That way I make sure that I've taken care of it. Once I've made a given recipe a lot, it gets transferred to my long term memory, and then I no longer need to worry about referring to a paper recipe. This is also where things get more fun, because I can experiment with substitions and variations and so forth. I've been told that I'm a pretty decent cook. My speciality is dairy-free vegetarian dishes.

Mirenithil wrote:

Yeah, I never have the problem with the steps out of order thing; when the fog hits, I just tend to lose everything beyond the step I'm currently on (and more often than I am really comfortable with, that will evaporate too. grrrrr.) Notes are a -godsend-, and grocery store lists are mandatory. We should buy stock in the Post It Notes company. heh

I absolutely need grocery store lists. If I don't have them I forget something--usually lots of things. One thing I try to do is organize my list to match the layout of the store, so I won't have to double-back and can get out of the store as quickly as possible. I have to be very careful about grocery shopping because the stores also tend to be major sensory overload for me. They're noisy and full of bright lights and unpleasant sounds (I have auditory sensitivity issues). I frequently lose the ability to speak while grocery shopping and can usually just barely manage my memorized Obligatory Social Interaction at the check-out. It's probably one of the situations in which my disabilities are most obvious.

Mirenithil wrote:

Yes. Exactly. So much exactly this. I have long since come to accept that for the enormous majority of people out there, unless they have direct, firsthand experience of this kind of thing, they can not grasp what it's like, so they have no empathy for a problem they do not really think exists. (It's that whole "It's not a problem for me, therefore it's not a problem for anyone" attitude that is a cause of so damn many of the societal problems we talk about on this forum)

YES, exactly. Were you hear for the "We all have the same brain" debacle with Sam, who later got banned? Rose kept trying to explain to him why that was a really ableist thing to say, and he refused to listen. (I stayed out of it because I knew I lacked the energy to respond.) I run into a lot of "just try harder," when I'm already trying as hard as I possibly can. Having such a wide spread of abilities does not help, and neither does that my functioning varies a lot from day to day depending on whether my seizure disorder is behaving itself at the moment. In some settings I might look like a slightly-awkward but well-adjusted neurotypical person, while in others I am clearly disabled. I really wish that some sort of disability awareness training or disability studies class was required for the general population. It really seems like the majority of the population is not aware that most disabilities are not immediately visible, or that disabled people's functioning can vary from day to day and place to place.

Mirenithil wrote:

I appreciate very much that you do that. The world could use more compassionate, articulate people like you doing what you do.

Thanks! I love my job. It's really fascinating. Mostly I work with records (especially death records), but I also get to participate in meetiings about what's going on with some of our living clients. Everyone I work with is really kind and social-justice minded-- I suppose that's common with non-profs, because it's not the sort of place that anyone works at for the salary. Most people there have family members with disabilities, and a few of us have disabilities ourselves.

Mirenithil wrote:

Thank you. I keep a written list of specific memory loss incidents (because, surprise surprise, if I did not write them down, I would forget them.) The intent is to have documentation for the doctors.
Heh. I can post some of the more irritating or entertaining incidents, but the whole list is too long and boring. (I very much prefer to find the funny in this, and laugh about it, every time I possibly can.)
 

Keeping documentation is so much harder than it sounds... Theoretically I should have a detailed log of my seizures, but when I have a seizure, the last thing I'm thinking about is writing it down! I suppose it's similar for you with your memory lapses. I would totally be down for hearing about some of the more entertaining ones. I have some funny stories about weird things that have triggered seizures.
 


My girls: Kirsten Johanna Larson (c. 1854: Ryd, Sweden/ Minnesota), Olive Leah Fonseca (c. 1887: East London, UK), Eva Marie Graff (c. 1926: Upper Michigan)
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9/20/2014 3:16 pm  #16


Re: The Memory and Cognitive Issues Thread

citrusella wrote:

Does anyone else here use Goal-Fish? I've been using it for chores and stuff (particularly the cleaning of rooms) because I don't like having to expect my mom to write a list (she's nice and does it, but yeah), and my dad's always like "what don't you get about 'clean x room'?" (Um, everything? XP)

I've also used these autistification strategies (so called because the blogger is autistic, but beyond the first one, they're mainly memory and time-management helpers) once upon a time--mainly the chore and grocery ones a few years ago until the room I was in got hot and made the adhesive on the velcro give out--and I've been meaning to try the homework wall, since I royally suck at remembering homework and I know I'd at least think of remembering it if it was all on the wall behind where I sit my computer. XP

Ooh! This stuff is awesome! Thanks for posting this. I think I'm going to have to try out several of these things.


My girls: Kirsten Johanna Larson (c. 1854: Ryd, Sweden/ Minnesota), Olive Leah Fonseca (c. 1887: East London, UK), Eva Marie Graff (c. 1926: Upper Michigan)
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9/21/2014 12:06 am  #17


Re: The Memory and Cognitive Issues Thread

ellaweasel wrote:

I run into a lot of "just try harder," when I'm already trying as hard as I possibly can.

Yes. Grrrrrr, yes. It's always beeing seen as either being lazy, a slacker, or just outright rude when the memory fails. (insert canned speech #1 about 'I have memory issues, so please don't take this personally, but... what's your name again?')

ellaweasel wrote:

Having such a wide spread of abilities does not help, and neither does that my functioning varies a lot from day to day depending on whether my seizure disorder is behaving itself at the moment. In some settings I might look like a slightly-awkward but well-adjusted neurotypical person, while in others I am clearly disabled.

Yes, that ability spread is very good at somehow apparently invalidating the disability in many people's minds. "But you're so -articulate.- You keep forgetting my name/my face, therefore you must just not like me very much. How rude of you!"

ellaweasel wrote:

It really seems like the majority of the population is not aware that most disabilities are not immediately visible, or that disabled people's functioning can vary from day to day and place to place.

Yeah, I didn't appreciate these facts at all either until the memory issues kicked in for me. I suspect it's unfortunately true probably for most people. The variation in day to day functioning came as such a surprise to me. How does that even work? And, yep, that whole internalized ableism thing kicks in and says 'You're just not -trying- hard enough, you could do this yesterday!' There is a certain amount of compensating I can do - I talk around words I forget, and I'm so good at this people generally don't notice I'm doing it - but there are some things you cannot do that with (people's names.)

ellaweasel wrote:

 I have some funny stories about weird things that have triggered seizures.
 

If you are interested in sharing, please do?
A few of my own memory fade stories:
- My landlords left for the summer last year, and the day after they left, the burglar alarm in their place went off. (false alarm) The police knocked on my door to talk to me (my ohana, ie seperate family dwelling, is directly attatched to the main house,) and I could not name my landlords. I just could not come up with their names, despite having known them and lived next to them at least three years. (Nor did I hear the burglar alarm, because my ears aren't great in high ranges anymore!) The cop was giving me quite a bit of the old stink eye, and I don't blame him - didn't hear the alarm, can't name your landlords? And I never did remember their names for the duration of the chat with the cop. Ai yai yai, hahaha.
- I couldn't remember the word 'plumber', so I said 'we'll get the right kind of professional in to fix this." I do this kind of talking around a word I forget fairly frequently.
- Once in a very great while, something seemingly completely random will stick immediately and clearly. It is an absolute mystery to me how this happens, haha.
- I spent most of the last three years + volunteering as staff at various Minecraft servers. If I catch a player breaking a rule, there are two things I must do immediately: a) write down their name b) the specifics of what happened. If a player is being problematic in chat, I have to take screenshots, because I can not quote either them or myself afterwards. I'll be able to give the gist of what happened for a while afterwards, but the specifics always go away immediately.  Most players are kids, and many of them will lie through their teeth to try to get out of trouble, and -that- is a serious problem for me, because conflicting information tends to over-write what's in my head until it is a complete hash. Other staff are able to say "No, that's a lie, because you said such-and-so in game *quotes player verbatim*." Me, I won't remember who this player is or why I banned them unless I look at the notes I made on the spot at the time. God help me if another staff member wants to talk about the incident even five minutes after it's happened, if I don't have notes like that.
- This was the hardest part of cognitive testing for me: the tester read me something, then asked me questions about it. But they weren't direct yes or no questions; they introduced a piece of information, then asked if it was right or wrong. The overwrite thing happened for me, and I just -floundered- so hard, because I had no clue if the information now being offered was part of of the original story or not. The tester kinda gave me the eye and I remember her saying something like this being the easiest part of the test for most people. Yeah, well, good for them. *snort*

 

9/22/2014 9:44 pm  #18


Re: The Memory and Cognitive Issues Thread

My theme song: Oh Right, I Forgot (Wait, What Was I Doing Again?)Other tracks from the same album:- Crap, I Forgot His Name (Again)- How Long Ago Did I Put The Cookies In The Oven- I Forgot The Grocery List At Home Again (Fifth Time In A Row)- What Did I Come Into This Room For- I Just Had That Item Ten Seconds Ago (Wormholes in Spacetime)- I Went To The Store To Buy Eggs (And They're The Only Thing I Didn't Get)- Crap, I Don't Remember If I Bought The Eggs Last Time Or Not- Do I Know You From Somewhere (Running Into The New Boss At The Grocery Store While Trying To Buy Eggs)- What's The Word For That Again- So Many Post It Notes (The Walls Are Yellow)- What's That Doll's Name Again ( this last one stuck on infinite repeat)If anyone else wants to make up their own theme song, feel free.

 

9/23/2014 6:46 pm  #19


Re: The Memory and Cognitive Issues Thread

So, I kept forgetting to reply, but here are some of the weirdest things that have caused me to have seizures:

1.) Jack Nicholson's eyebrows juxtiposed with a fluffly pink tiara
Yes, you read that correctly. I also had jet lag, and the lighting probably didn't help, but it was Jack's eyebrows that put me over the top. I'd been back from Germany for a couple of days when my parents took me out to eat at a Red Robin restaurant. If you've never been to one (and I'll never go again, after this incident), they have very odd decor, with all kinds of strange things on the walls. One of the things on the walls was an approximately 5 x 7 foot painting (yes, painting, in oil) of Jack Nicholson circa the late 1970s, in which his eyebrows were doing that thing were they're practically parallel to each other. A small girl was having a birthday party right in front of said painting. She was wearing a fluffly pink tiara. Something about this combination just caused my brain to short-circuit, and I had a seizure.

2.) The Danish number system
I was taking private Danish lessons along with a friend of mine, who is learning it because she has Danish in-laws, and when we were drilling the numbers over 50, they gave me a seizure. How? Well, counting in Danish involves saying things like "half-threescore-and-two" and meaning "fifty-two" by, it which *does not even make mathematical sense.* Add to this that the pronunciation is seriously the hardest of any language I have ever attempted to learn-- and I have, mind you, wrestled with Polish at one time in my life-- and bears very little resemblance to the spelling. Seizure.

3.) Being startled while grocery shopping
A couple of weeks ago a friend of mine from work said hi to me at the grocery store. I was really happy to see her. So of course I had a really nasty seizure. What can I say? I felt like one of those fainting goats.
 


My girls: Kirsten Johanna Larson (c. 1854: Ryd, Sweden/ Minnesota), Olive Leah Fonseca (c. 1887: East London, UK), Eva Marie Graff (c. 1926: Upper Michigan)
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