First of all, shout out to u/abhisk for the AMA request.

Well, let's get down to it.

I am 19 years old. I have an autoimmune condition (see below) that affects my neurological function. Due to this, I can only maintain about 6 months of memory.

Details

On my memory

My memory damage is to do with episodic (event-based) memory. This is different than semantic (fact-based) memory or muscle memory. I remember facts well, especially useless trivia. The problem is remembering events that I have been a part of.

Here is how it works:

Much more than 6 months, and I won’t remember the event. I may know what I did, or that I was there, but I can’t “replay” the event(s) in my mind.

I have not always been this way. I did not start manifesting symptoms until I was 14. Up until then, I was for the most part “normal”. I also retain some memories from before that time. It is more a problem with retaining and solidifying “new” memories.

My short-term memory is not bad. It is not what it should be, but I have put into place a variety of systems and coping mechanisms that help me function.

The upside of the memory loss is that I can re-watch shows and movies like they are brand new every few months.

On my disease

I have mitochondrial disease. I am learning more about my condition every day. Even though I have had symptoms since I was 14, we are just finally now getting answers. It has been a long and frustrating road of misdiagnoses. I do not yet know what specific variant or subset of mitochondrial disease I have. About a month ago, my doctor did a muscle biopsy and sent it out for genetic testing, which will tell us all we need to know once it comes back.

Mitochondrial Disease causes a wide array of symptoms. This AMA is specifically to do with the memory loss. If there is interest expressed, I can do another AMA on the disease, the other symptoms, and what my life is like with it.

My Proof:

EMG results and neuromuscular specialist consult notes.

http://imgur.com/a/BOFVQ

Edit : A few days later: NOT THE END OF THE AMA. JUST A FEW COMMENTS Thank you all for your kind (and hilarious) comments. Thank you as well for your great questions. I hope that this AMA has helped to explain what this type of memory loss is like to live with. Thank you, once again, for the interest and questions.

I am not ending the AMA

I will continue to answer any and all questions that are posted.

Edit: Wow! Got an article written about this AMA on upvoted.com! Thanks to everyone once more for your fantastic questions, and feel free to keep them coming if you have more.

Comments: 406 • Responses: 83  • Date: 

Advorange237 karma

Can we expect to see this AMA again in six months time?

NoviceoftheWorld229 karma

No. Maybe. I don't know. Ask me in 6 months.

N8theGr835 karma

To be honest, it'll be a new group of readers then, too, so it could still be interesting for those who haven't seen it yet.

I saw that you have a mitochondrial disorder. How did they identify it? Everything I've read about mitochondrial disorders says they're really hard to identify, and we don't know much about them. Are there specific genetic markers, or is the genetic testing more vague than that?

NoviceoftheWorld21 karma

They are more difficult to pinpoint than they are to identify. That is, there are many mitochondrial disorders. That is why I am having genetic testing done, to pinpoint what it is. Specifically, a mitochondrial DNA whole genome analysis.

ObamaBigBlackCaucus61 karma

I hope so. I loved the one he did 6 months ago.

NoviceoftheWorld78 karma

I did one 6 months ago? (see what I did there?)

Ionlywearplaid140 karma

Do you remember about that $100 you owe me?

NoviceoftheWorld197 karma

No. But thank you for reminding me. I'll get that to you.

Tormodb31 karma

Do you remember about that $100 you owe me?

NoviceoftheWorld83 karma

No. But thank you for reminding me. I'll get it to you.

PoopStuckOnYourFur5 karma

Do you remember about that $1,000,000 you owe me?

NoviceoftheWorld23 karma

Yes. You gave that to me only a month ago. I'll get it to you. Get off my back.

HuskyTheNubbin127 karma

Have you ever compared notes of what "past you" and "present you" thought of different things such as movies? If so, have you ever completely disagreed with "past you"? I'm curious how much our current state of mind influences our opinion of something. Once decided do we just stick to our first impression?

You can experience the same thing twice, perhaps in different ways, which could be seen as a rare gift :)

NoviceoftheWorld101 karma

You know, as strange as it seems, I haven't done that. It's an interesting theory.

DaedricBlood15 karma

This was my line of thought. Do you possibly keep a list of movies/shows you really liked and planned to re-watch once they were forgotten? And has that ever lead to you not liking the second viewing due to any possible changes in yourself?

NoviceoftheWorld30 karma

Ah. I see. I do not keep a concrete list. I can usually remember whether I though the movie was "good" or "bad". It's like "I know I liked this movie, but I don't know why." If I remember it being good, I watch it again.

I've never had the distinct feeling of disliking the second viewing. Maybe it is because my taste hasn't changed much in the past few years.

SirPribsy3 karma

Maybe it is because my taste hasn't changed much in the past few years.

This makes me wonder how much your tastes can change without those memories. I'm no expert on how tastes/opinions change but I think it's much more complex than just learning new facts to sway you.

NoviceoftheWorld8 karma

I've wondered the same thing. Will I change as I experience new things, or will I stay the same? It doesn't bother me too much though, I like who I am.

Dr_Phrankinstien6 karma

In a situation like thinking back on a movie 6 months after watching it, how much detail do you lose?

Do you forget elements of the plot, do you lose memory of how certain scenes looked, etc.?

Edit: I found the answer to this question later in the thread.

NoviceoftheWorld19 karma

I definitely lose the memory of how things look. This makes movies with exceptional cinematography a joy to re-watch. I will sometimes maintain the plot. For example, I will know "so-and-so" dies, but not how or when.

some-call-me-tim44 karma

Have you seen memento?

NoviceoftheWorld48 karma

No. I've been told to watch it though.

toeofcamell55 karma

But maybe you did see it

NoviceoftheWorld77 karma

It is possible. I'll watch it again.

euratowel9 karma

That was my first thought upon seeing this thread. You should definitely watch, OP.

NoviceoftheWorld37 karma

I'll put it on my "Movies to Watch" list.

Yes. I have that list.

I have a lot of lists.

euratowel7 karma

I would imagine. Do you carry a pocket notebook to help you remember certain things that you may forget?

NoviceoftheWorld28 karma

All the time. I carry a pocket notebook. I have note taking and reminder apps on my phone. All of which I check several times a day. It's essential.

BassFight5 karma

How do you know? Do you keep a list of 'movies I watched'?

NoviceoftheWorld14 karma

No. I can usually remember whether I watched a movie or not. I can even remember whether it was "good" or "bad". I just don't remember anything about it.

BassFight8 karma

Fascinating... So if I understand correctly in many ways you remember very vaguely that, but not what, how, when, etc.? I.e. you know you attended a party but not when it was, who was there, what you did etc?

Or are past years very much just a blank slate?

NoviceoftheWorld12 karma

You understand correctly. But the farther back it was, the less I remember about it. Eventually, most of them disappear.

BassFight10 karma

In theory, could you completely forget this AMA and do it again in some years' time?

NoviceoftheWorld18 karma

Yes.

irspangler4 karma

Would you even know for sure if you hadn't though? Or is that not how it works?

You mentioned you can remember facts, but not events. Is it like you can remember if you have or haven't watched a TV show/movie - but not anything that occurred (assuming 6 months have passed)?

And thanks again for doing the AMA.

NoviceoftheWorld12 karma

I would probably know if I saw it or not. It'd be like "I know I saw this, but I have no idea what it's about."

I am happy to do the AMA :)

dkurniawan39 karma

How do you remember for sure that you have a memory damage?

NoviceoftheWorld45 karma

Whoa.

0ddStranger36 karma

What are some day to day struggles you have to deal with due to this?

NoviceoftheWorld111 karma

I have to write down anything I want to remember immediately. Otherwise, it will disappear. Guaranteed.

I am often thought of as "checked out" or "ditzy" by those who don't understand.

One struggle is having people recall a good experience you shared, and remembering absolutely nothing about it. It makes me feel bad. Or when I am having a good time with friends or family, and it hits me that I will forget it. That can be rough too.

ReverseGusty14 karma

This sounds like me. I haven't been diagnosed with anything (yet) but if I don't straight away write something down that I need to remember it's like my brain just threw it in the bin...

NoviceoftheWorld26 karma

With me we noticed physical symptoms first. i.e extreme muscle pain, muscle weakness, exhaustion, exercise intolerance, etc.

ReverseGusty17 karma

:| you're describing me!

Doctors think I have fibromyalgia because nothing has come up on blood tests :(

Swiftysmoon5 karma

I'm actually in a very similar position. Was misdiagnosed once with a spine disease and my rheumatologist has since settled back on fibro being the cause of my pain and fatigue. I know fibro fog can be bad, but my complete inability to remember experiences I've had more than a year ago or what happens in the media I consume is baffling to me.

NoviceoftheWorld13 karma

I find that sometimes Fibromyalgia is a blanket diagnosis. I was misdiagnosed with fibromyalgia. In my opinion, it's what doctors say when they don't know what's wrong. That isn't to say there aren't people with fibromyalgia, it is absolutely real. It just wasn't what I had.

techiebabe3 karma

Yep. I have Ehlers Danlos Syndrome. I was recommended to take CoQ10 to boost my mitochondrial activity and give me more energy but it didn't help.

I guess me asking if you've tried CoQ10 is like people seeing me in my wheelchair and asking if ive heard of glucosamine?

(if I had a pound for every time... Etc)

NoviceoftheWorld5 karma

Yes, CoQ10 is one of the supplements I am on, along with a cocktail of others that work along with it.

Hang in there. I think people are trying to help when they suggest medications you should take. They want to help; but don't realize that it isn't their job to "fix" you. The best thing others can give is support. Keep fighting the good fight, friend.

Jippylong1230 karma

What is your favourite memory in the last six months and what is it in your life time?

Do you write down memories you really enjoyed as like a record so even if you don't remember them it's like something cool to look back and read through?

NoviceoftheWorld82 karma

YES. I absolutely keep a record.

Ex: I once got to visit a movie set (probably my favorite). I had an amazing, jam-packed day. That night, I wrote everything down. Every detail. 8 pages worth of writing. I am so thankful I did that. Now when I read it, I even get little "snapshots" of REAL memory.

I now do this as standard practice when I have a particularly good day.

trowzerss25 karma

If you only write down the good days, do you think this will mean you will end up with an overall more positive view of your life than most people?

NoviceoftheWorld40 karma

Maybe. But I want to remember some of the bad things too. If we don't remember the bad, how can we appreciate the good?

exfarker2 karma

Have you considered fabricating a good memory?

NoviceoftheWorld5 karma

No. I want to know that what I look back on is real.

Phallicmallet22 karma

How did you remember your login/password?

NoviceoftheWorld45 karma

Lol I have a password vault utility on my PC.

asjaewalker21 karma

How has this affected your ability to maintain relationships with people?

NoviceoftheWorld35 karma

I can only maintain a few close friendships, with people that I see often. I don't have a wide variety of acquaintances, just a few close friends.

With me, if I don't see you often, we won't be able to forge a close relationship.

asjaewalker14 karma

Ahh that sucks. But at least you have those close friendships, they are the ones which matter most :)

Another question: When you meet new people, do people often understand your condition? How do people react when they find out?

NoviceoftheWorld25 karma

Yeah, I actually prefer just having a small circle.

I don't tell people about my condition when I first meet them for a few reasons.

  1. I don't look sick.

  2. It is a difficult, time-consuming concept to explain. One that some people have a hard time understanding.

  3. They don't always need to know.

If I know the person is going to stick around, if I feel it's worth telling them, or if it's said in passing conversation, then I tell them.

How people react largely depends on what/if any experience they have with autoimmune disorders. Sometimes they're like "I totally get it. No problem!" Other times it's like "...but you don't look sick."

The latter response makes me cringe.

bebrio15 karma

Have you considered doing something similar to personal vlogs where you talked about your week.

And similar do this, how much of your life are you "future proofing"

NoviceoftheWorld16 karma

No, I don't keep a vlog. I keep a daily journal where I write about events and what happened that day.

Can you elaborate on what "future proofing" means?

bebrio4 karma

Similar to keeping a journal, how much of your day to day are you documenting

NoviceoftheWorld21 karma

I keep what I call a "one-sentence" journal. Everyday, I write down a one sentence to one paragraph summary of the most important/relevant thing that happened that day.

I also document in extreme detail any event that I especially want to remember.

But I'm not constantly documenting or trying not to forget. I have come to accept that this is how things will be for me.

jabbathechav15 karma

How do you trust people? I guess a lot of folks might just want to fuck with you.

NoviceoftheWorld23 karma

I have trust issues. I have to know a person for a long time before I even remotely trust them, and even then it's baby steps.

Thankfully, my gut is pretty accurate when it comes to people. If my gut tells me not to trust someone, I am extra cautious of them.

housedemi15 karma

Do you check your reddit profile, go through your comments and after arriving at "6 months ago" do you ask yourself "Did I really write that?"

NoviceoftheWorld26 karma

Absolutely.

WippitGuud11 karma

Do you know if you're more at-risk for other memory-related issues like Alzheimer's or dementia?

NoviceoftheWorld10 karma

I do not know. I know that my condition can worsen as I age.

RockAllen11 karma

Has it affected you with school at all? What are your plans for college? Would taking core math classes for your degree be affected because some of the work would require you to know math from early high school?

NoviceoftheWorld25 karma

I've gone through education like most of my peers. My learning mechanisms are intact.

I have my Associate's degree because of an early college program. Because I continually reinforced the material, I didn't forget it.

If I were to take more math classes, I would most likely find myself relearning the basics and then playing catch-up.

KindWords4208 karma

Did your brain explode when you watched Inception?

NoviceoftheWorld82 karma

I don't remember.

avelertimetr6 karma

How did you or your parents first realize something was wrong and to go see a doctor?

NoviceoftheWorld6 karma

When I was 14, there was a period of 5 days where I didn't have the strength to get out of bed. That was the big kickoff.

We started bouncing back and forth between doctors after that as my symptoms developed.

iWant_To_Play_A_Game6 karma

Has there been anything that you can't seem to forget?

NoviceoftheWorld6 karma

A few. I retain events longer if there is an emotional connection. This means that those times when I was very upset or afraid stick around longer. Most of them are from my early life, before I got sick.

On the flip side, I remember good emotional memories for longer too.

Zobtzler5 karma

Would it be possible for you to try to remember something that happened today, every day, for a couple of minutes, for the next 6 months. Would you be able to do that? It could be a cool experiment

NoviceoftheWorld12 karma

I would be remembering that I'm supposed to remember something, rather than remembering the actual event. Like when you remember a video of the event, but not the event itself.

Does that make any sense at all?

Zobtzler1 karma

Like you remember that the event took place, but not what was going on?

NoviceoftheWorld4 karma

Exactly. Often, I will know that it happened. I will know I was there. But I can't remember what happened. I can't "picture" it.

maxman142 karma

I assume it's more like you remember the remembrance, but not the memory.

NoviceoftheWorld4 karma

Good description. Sometimes, I will recall something, but I know it's not the "real" memory. Like it might be from a video or a picture or a story, but it isn't mine.

Alternately, I get very happy when I recall something and I know it is a real memory that I have kept.

diabeticporpoise5 karma

Hey- 18 year old here with memory loss issues! We should talk! My question is how have you dealt or have you even encountered "awkward" situations where your "supposed to" remember something? How do you deal with it? For me, this forms most with my mom, always showing some form of passive disappointment in me when I cant remember, and I just kind of try to pretend I don't notice.

NoviceoftheWorld5 karma

Hi. I'm sorry that you are struggling with memory problems. Yes, there have been many a time when I was supposed to remember something and didn't. Sometimes it isn't a big deal, sometimes it is (like the time I managed to leave a freezer open for a week).

What I've come to realize is that it hurts the other person just as much. Many think it's because you aren't trying to remember, even though that isn't the case. My advice to you is to write things down that you are supposed to remember, and then review that list. That is something I do. And even though it isn't your fault, a simple "I'm sorry that I forgot." can go a long way. Good Luck!

NinjaPylon5 karma

... I can never replay things that happened in my head for anything longer then a month ago. I've always been amazed when people recount stories of things they did in the past. Are you telling me that ability is normal?

NoviceoftheWorld7 karma

I'm not sure I understand your question.

NinjaPylon3 karma

I think I might have a similar condition. I can't recall events. Facts and numbers yes, but not events or things that happened. What led you to getting this checked out

NoviceoftheWorld6 karma

The disease I have displays physical symptoms as well. We saw a doctor when I started having severe muscle pain, muscle weakness, exhaustion, exercise intolerance, etc. That's how it all started. It isn't just my memory.

NinjaPylon6 karma

Oh... so I'm just a dumbass like my father said..... oh well. I wish you luck friend.

NoviceoftheWorld7 karma

lol thank you...and if it's any consolation, we're all a little dumb.

NorthernSparrow4 karma

You may have a different condition that has a different set of symptoms. All memories fading past 1mo is not normal. Why not go see a neurologist to get checked out?

NoviceoftheWorld2 karma

I agree. Memory loss can be caused by many conditions. See a doctor if you can.

NorbitGorbit4 karma

can you encode event-memories in the form of music pieces that you learn to play that is retained by a different memory system?

NoviceoftheWorld3 karma

Whoa...that sounds pretty deep. To answer your question, I don't know.

NorbitGorbit1 karma

could you try it -- basically you learn a song that has episodic information and see if you can recall it (or play it) later?

NoviceoftheWorld3 karma

Like associating a memory with a song?

NorbitGorbit2 karma

sure. or learn any song that tells a story. if you can recall the song, you can reconstruct the story, presumably.

NoviceoftheWorld4 karma

It's possible...retaining a memory using a different memory system.

allergic_to_LOLcats4 karma

I think I remember a very similar post several months ago...sure you haven't done this before?

...nah, just fucking with you. Serious question: Do you keep a diary/video of yourself for memory's sake?

NoviceoftheWorld3 karma

Yes. I keep a daily journal where I document the most important/significant thing of the day. In addition to that, if there is an event I particularly want to remember, I document it extensively.

bigc5034 karma

What was it like growing up with your disorder?

NoviceoftheWorld7 karma

My life was very much "normal" until I hit puberty.

Things were difficult for a long time. I was scared, and felt very isolated. I was young, I didn't understand. I couldn't function the way I used to, and it took me a long time to accept that I will never be the same. I went through a period of deep depression, but I came out on the other side with coping mechanisms and a (mostly) positive mindset.

Rap_Zod4 karma

Does this mean music and movies become brand new to you after 6 months?

NoviceoftheWorld16 karma

The music I listen to, I listen to often. So I don't get the opportunity to forget that as much.

Movies are different. I can pretty much re-watch a movie like it's new after a few months.

irspangler3 karma

Thank you so much for doing this.

What are the hobbies that you mentioned that help your memory? Have you found any specifically that strengthen your ability to retain the "events" of your memories?

NoviceoftheWorld13 karma

I play the piano. Playing instruments is proven to improve cognitive ability. I read. Also great, because I can re-read the books! I meditate and do yoga. I write. I do jigsaw puzzles. All of these improve neuroplasticity.

I practice all of these routinely, so I don't know if one helps in particular.

And thank you for saying thank you :)

irspangler4 karma

A Pianist! Fantastic!

I'm fascinated to know if you write any music (if you don't - please start - like now, or yesterday)?

Somewhat counter-intuitively, I would think your disease might actually be incredibly liberating in creating music. I could be projecting here, but I would think the burden of perfectionism in creativity would be somewhat lessened - but without actually affecting "attention to detail". As long as you were careful not to repeat yourself in your own music, you would be free of that constant itch that - "Shit, this kind of sounds like song X. DAMNIT! I'm just ripping off Band Y."

I hope that makes sense - I don't mean to imply that your disease is somehow a "Get Out of Jail Free"-Card for Copyright Protection/Trademark Lawsuits (although...) but mean it more for the impact it might have on your creative brain.

NoviceoftheWorld2 karma

Lol. I do not write music. I just play.

passfish2 karma

I love that you can rewatch shows and movies! Do you have some picks of the stuff you always go back to?

NoviceoftheWorld3 karma

It's one of the perks.

Some of my go-to's are:

-New X-Men Movies - Marvel - The Classics - Sherlock

I especially enjoy re-watching visually interesting films, as the visuals are what I forget the most.

LowPieceOfShit2 karma

How has your memory loss affected your past relationships (with family or s.o. s)?

NoviceoftheWorld4 karma

I think my memory loss causes me to lose a certain connection.

It's difficult to share the bond the other person feels when you can't recall the shared experiences you know you've had.

That being said, my family is extremely supportive and understanding, and I have a deeper appreciation for them than I did before I got sick.

1337ndngrs2 karma

I am learning more about my condition every day

Are you sure? ;)
All joking aside, what were the first symptoms you started to notice?

NoviceoftheWorld1 karma

The first symptoms were physical. Extreme muscle pain, muscle weakness, exercise intolerance, and exhaustion were what kicked things off.

margohera1 karma

Are you constantly shocked by spoilers you previously knew (i.e. Dumbledore dies, Darth Vader is Luke's Father, etc.)? When you say that you can re-read or re-watch anew, do you not remember important plot points at all?

NoviceoftheWorld2 karma

Darth Vader is Luke's Father!?!?

Kidding.

Not exactly. I usually remember important plot points. It's the details, the dialogue, and especially the visuals that don't stick. It's like "I know this happens, but I don't know when or why."

margohera1 karma

I totally set you up for that one

NoviceoftheWorld1 karma

You did. I couldn't resist. Stop with the Star Wars spoilers (haha! get it?)

Treehouse-Of-Horror1 karma

Are you taking a lot of photos/videos and keeping hold of items that may help spark memories in years to come?

NoviceoftheWorld5 karma

Yes and no. When it's just a regular day, I don't. I think I have come to a sort of peace with it. This is just how my life is.

That being said, if there is an event I particular want to remember, I document it in photos/videos/writing like mad.

Yes. I keep mementos. They don't always work.

Zobtzler1 karma

Do you have a diary? If not, would you be interested in having one? Maybe even a recording on a computer.

NoviceoftheWorld1 karma

Yes. I keep a daily journal where I document the most important/significant thing of the day.

ThatGuyNobodyKnows1 karma

Hi there! I saw your post in the request thread the other day, really interesting stuff. I saw one person saying something like 'I'd watch Groundhog Day 100x'. But my question is, would that work? Obviously you can watch movies multiple times but is there a point where you've watched it so much (each in a new period of 6 months) where you will remember it? I understand if you don't know, because it'd be something I wouldn't think of if I were you, but I'm really curious. It's midnight here so I probably won't be able to elaborate/reply/whatever immediately. Thanks for doing this AMA, btw!

NoviceoftheWorld1 karma

Good question. There has to be a threshold, right? After a few times of watching a movie, I can remember the basic plot for longer periods of time. So I think there has to be a threshold.

quangdog1 karma

NoviceoftheWorld2 karma

YES.

Example:

Me: What are we eating for dinner?

Mom: Spaghetti. We just had this conversation.

Me: Oh. (walks off confused).

Donald_Keyman1 karma

[deleted]

NoviceoftheWorld2 karma

Yes. I keep a daily journal documenting the most important/significant event of the day. Sometimes I just write down random tidbits that I remember, just to keep.

blackheartededitor1 karma

Do you remember music? Like, if you have a favorite album, and then let it go six months without listening to it, does it sound fresh and new after six months? For some reason I would suspect that you would remember it.

NoviceoftheWorld2 karma

I'd lose the lyrics, but might remember the melody.

NormalPeopleSp00kMe1 karma

Have you ever forgotten something important and got into trouble for it? maybe at school or something?

NoviceoftheWorld2 karma

In the beginning, yes. I learned pretty quickly to document anything I needed to do.

NoelMalendo1 karma

Have you ever thought:

To discover that LP/Book/Movie was soooo good! I look forward to discover it the next time!

Or asked in another way: Did you ever decided to NOT write something down immediately because you hope to have that discovering-moment again?

NoviceoftheWorld1 karma

Not really. I know that there will come a time when I can discover it again. Instead of trying to forget, I look forward to that.

NoelMalendo1 karma

To loose my ability to remember things is one of my biggest fears. Is there something you can tell me to calm me down on this?

NoviceoftheWorld7 karma

My condition is rare. There are a lot of things you can do to stay sharp.

If it happens, it happens. You can't fully control it. But I can tell you this:

It happened to me; and I'm doing just fine.

NoelMalendo1 karma

Is there something like a community? Do you know some people in this situation? Is there a subreddit or something comparable?

NoviceoftheWorld3 karma

There are absolutely communities. I do not know anyone personally with the same condition. r/mito is a subreddit specifically for mitochondrial disease.

Dr_Phrankinstien1 karma

For the memories that, as you've said, you don't actually remember, would you say that they kind of act like second-hand information of something that happened?

Like, As if somebody else had been there in your place and had described the events to you afterwards.

NoviceoftheWorld2 karma

Yes, it's sort of like that. I may know I was there, I may know what I did, etc. but I can't "replay" the event in my head.

J-0121 karma

So I see you keep a diary, but what about pictures? Video? For some reason I think of the movie 50 First Dates.

Also, how was 6 months determined? Do you just slowly lose those memories that are older until they're basically gone, or inaccessible?

NoviceoftheWorld3 karma

I don't take videos and pictures daily. I do take a lot when I go on a trip or do something special.

We determined 6 months to be the threshold after testing how far back my memory could go. Questions like "Do you remember this?" "What do you remember?"

As far as describing how I lose them, I'd say you've got it. They just sort of melt away, until they are gone.

margohera1 karma

Does this ever become an issue with other people? For example, do you meet people and then forget them and it gets confusing when you meet again? How does this affect your love life?

NoviceoftheWorld1 karma

Yes. It can make meeting new people difficult. I have to meet people several times before their name sticks, and even then I have to speak to them often if I want to get to know them. I don't have a love life.

margohera1 karma

Is the lack of a love life related to your illness or the fact that you're a 19 year old boy? (I'm a 19 year old girl so I feel)

NoviceoftheWorld3 karma

lol because I'm 19 years old....a 19 year old girl. Did I write the wrong gender somewhere?

Anyways, I'm just not ready for a relationship yet. When I am, I will have to find someone who understands and accepts my condition.

margohera1 karma

Huh I don't think so...I guess I just assumed you were a guy for some reason. My bad, sorry. I also have an invisilbe illness/immune disorder so I totally understand

NoviceoftheWorld3 karma

lol no problem. I find that most people assume OPs are guys, unless they indicate otherwise.

Keep fighting the good fight.

SoulofThesteppe1 karma

Do you write down journal entries? to ensure you keep to know what you did?

NoviceoftheWorld1 karma

Yes. I have a daily journal where I document the most important/significant event of the day.

x-l-v1 karma

Have you ever thought about blogging your life? That seems like an awesome way to 'preserve' your memories. I know you're still young, but has your disease affected you from getting/keeping a job - if so, how?

NoviceoftheWorld2 karma

I've never considered a blog, that's a very good idea. I keep a journal, but a blog might be different.

My physical symptoms made my last job difficult at times. The memory was only an issue in the beginning, as it took me a little bit longer to learn the complicated tasks. That job sucked.

My job now is much better. I re-enforce everything I need to know by doing it, so I don't forget.

SmokeyCL1 karma

Do you feel like Jason Bourne?

NoviceoftheWorld5 karma

No. I do not feel like Jason Bourne. Or maybe I do. It's been awhile since I saw the movie.

Jcoulombe3111 karma

Damn, I was really hoping to come here and see you had forgotten you were going to do this AMA. Would have been priceless lol.

Umm, do you drive?

NoviceoftheWorld2 karma

Yes, I drive. My learning abilities are completely intact. I learned how to drive like everyone else. Since I drive everyday, I don't forget how.

juiceingwholeducks1 karma

you said

"My short-term memory is not bad. It is not what it should be, but I have put into place a variety of systems and coping mechanisms that help me function."

Id be interested in what those are?

also P.S. , can I borrow some cash, ill pay you back in July, 2016

NoviceoftheWorld1 karma

I take constant notes. As soon as I am assigned a task, or think of something I need, etc. I write it down.

I force myself to focus on one thing at a time.

I have note-taking and reminder apps on my phone that I check several times a day.

If I lent you money, I'd just set a reminder for myself for July, 2016 ;P

Dontinquire-2 karma

Why do you keep reposting this thread every day?

NoviceoftheWorld8 karma

Oh. Oh. I get it.

It's a joke.

Because of my...that's funny!

NoviceoftheWorld3 karma

I replied to an AMA request I saw earlier; and found there was so much interest in my post that is was worthwhile to do an AMA of my own.

humpustee-4 karma

Yeah I've been smoking weed for ten years and I have the same memory function, should I go see a doctor?

NoviceoftheWorld4 karma

Different kind of doctor.