IamA Person with Memory Loss. AMA!
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.
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.
EMG results and neuromuscular specialist consult notes.
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.
No. Maybe. I don't know. Ask me in 6 months.
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?
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.
I hope so. I loved the one he did 6 months ago.
I did one 6 months ago? (see what I did there?)
Do you remember about that $100 you owe me?
No. But thank you for reminding me. I'll get that to you.
Do you remember about that $100 you owe me?
No. But thank you for reminding me. I'll get it to you.
Do you remember about that $1,000,000 you owe me?
Yes. You gave that to me only a month ago. I'll get it to you. Get off my back.
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 :)
You know, as strange as it seems, I haven't done that. It's an interesting theory.
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?
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.
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.
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.
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.
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.
Have you seen memento?
No. I've been told to watch it though.
But maybe you did see it
It is possible. I'll watch it again.
That was my first thought upon seeing this thread. You should definitely watch, OP.
I'll put it on my "Movies to Watch" list.
Yes. I have that list.
I have a lot of lists.
I would imagine. Do you carry a pocket notebook to help you remember certain things that you may forget?
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.
How do you know? Do you keep a list of 'movies I watched'?
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.
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?
You understand correctly. But the farther back it was, the less I remember about it. Eventually, most of them disappear.
In theory, could you completely forget this AMA and do it again in some years' time?
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.
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 :)
How do you remember for sure that you have a memory damage?
What are some day to day struggles you have to deal with due to this?
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.
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...
With me we noticed physical symptoms first. i.e extreme muscle pain, muscle weakness, exhaustion, exercise intolerance, etc.
:| you're describing me!
Doctors think I have fibromyalgia because nothing has come up on blood tests :(
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.
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.
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)
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.
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?
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.
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?
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?
Have you considered fabricating a good memory?
No. I want to know that what I look back on is real.
How did you remember your login/password?
Lol I have a password vault utility on my PC.
How has this affected your ability to maintain relationships with people?
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.
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?
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.
I don't look sick.
It is a difficult, time-consuming concept to explain. One that some people have a hard time understanding.
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.
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?"
How do you trust people? I guess a lot of folks might just want to fuck with you.
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.
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"
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?
Similar to keeping a journal, how much of your day to day are you documenting
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.
Do you know if you're more at-risk for other memory-related issues like Alzheimer's or dementia?
I do not know. I know that my condition can worsen as I age.
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?
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.
Did your brain explode when you watched Inception?
I don't remember.
How did you or your parents first realize something was wrong and to go see a doctor?
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.
Has there been anything that you can't seem to forget?
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.
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
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?
Like you remember that the event took place, but not what was going on?
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.
I assume it's more like you remember the remembrance, but not the memory.
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.
... 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?
I'm not sure I understand your question.
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
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.
Oh... so I'm just a dumbass like my father said..... oh well. I wish you luck friend.
lol thank you...and if it's any consolation, we're all a little dumb.
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?
I agree. Memory loss can be caused by many conditions. See a doctor if you can.
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.
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!
Does this mean music and movies become brand new to you after 6 months?
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.
What was it like growing up with your disorder?
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.
can you encode event-memories in the form of music pieces that you learn to play that is retained by a different memory system?
Whoa...that sounds pretty deep. To answer your question, I don't know.
could you try it -- basically you learn a song that has episodic information and see if you can recall it (or play it) later?
Like associating a memory with a song?
sure. or learn any song that tells a story. if you can recall the song, you can reconstruct the story, presumably.
It's possible...retaining a memory using a different memory system.
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?
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.
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?
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 :)
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.
Lol. I do not write music. I just play.
I am learning more about my condition every day
Are you sure? ;)
All joking aside, what were the first symptoms you started to notice?
The first symptoms were physical. Extreme muscle pain, muscle weakness, exercise intolerance, and exhaustion were what kicked things off.
I love that you can rewatch shows and movies! Do you have some picks of the stuff you always go back to?
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.
How has your memory loss affected your past relationships (with family or s.o. s)?
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.
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.
Have you ever forgotten something important and got into trouble for it? maybe at school or something?
In the beginning, yes. I learned pretty quickly to document anything I needed to do.
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?
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.
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)
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.
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
lol no problem. I find that most people assume OPs are guys, unless they indicate otherwise.
Keep fighting the good fight.
Do you write down journal entries? to ensure you keep to know what you did?
Yes. I have a daily journal where I document the most important/significant event of the day.
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?
Darth Vader is Luke's Father!?!?
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."
I totally set you up for that one
You did. I couldn't resist. Stop with the Star Wars spoilers (haha! get it?)
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?
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.
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.
I'd lose the lyrics, but might remember the melody.
Do you feel like Jason Bourne?
No. I do not feel like Jason Bourne. Or maybe I do. It's been awhile since I saw the movie.
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?
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.
Do you ever feel like this guy? https://screen.yahoo.com/mr-short-term-memory-000000263.html
Me: What are we eating for dinner?
Mom: Spaghetti. We just had this conversation.
Me: Oh. (walks off confused).
"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
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
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!
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.
Do you have a diary? If not, would you be interested in having one? Maybe even a recording on a computer.
Yes. I keep a daily journal where I document the most important/significant thing of the day.
Are you taking a lot of photos/videos and keeping hold of items that may help spark memories in years to come?
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.
Is there something like a community? Do you know some people in this situation? Is there a subreddit or something comparable?
There are absolutely communities. I do not know anyone personally with the same condition. r/mito is a subreddit specifically for mitochondrial disease.
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?
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.
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?
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.
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?
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.
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.
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.
Why do you keep reposting this thread every day?
Oh. Oh. I get it.
It's a joke.
Because of my...that's funny!
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.
Yeah I've been smoking weed for ten years and I have the same memory function, should I go see a doctor?
Different kind of doctor.
Can we expect to see this AMA again in six months time?
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