Let's Make a List of our Memory Symptoms
I thought it would be great for us to have a really good list of our memory symptoms. After looking around I found no such list out there (if anybody finds something like that please reply with a link here), so for now we can make our own But first, I’d like to tell you how I got to this question.
After complaining about my memory loss symptoms to a neurology physician at the University of Florida, they sent me for memory testing by the Neuropsychology Department. By the time my turn came up I had read in a few studies indicating that people with narcolepsy perform just as well on standard memory tests as those not having narcolepsy. So I wasn’t expecting much from my testing. I informed the psychologist of that beforehand, and sure enough, none of my symptoms showed up. Why? I’m guessing the tests don’t look for our type of symptoms and how and when they appear (I have some ideas about that - for another day). After all, the tests were created to find memory problems associated with dementia.
When you look at our recent memory poll, almost everyone said they had experienced memory problems due to narcolepsy, and I found that to be amazing. After the poll, I thought it was good time to take a look at what our symptoms are and share them with each other. Hopefully that will provide validation for people with similar problems - I know it would be good for me. Here are some of the ones I have seen in myself:
Automatic Behaviors. I have documented a few of mine.
Difficulty in completing tasks. My train of thought sometimes just stops without completing the task, and I move on to something else or I’m left just standing there not knowing what I’m doing. A few weeks ago I started to get a cup of coffee from the kitchen and didn’t end up getting it. I did that 5 times (my wife counted), and still no coffee. I even went far enough to have the cup and carafe in my hands.
I set things down and can’t find them. On a bad day I do this all day long.
Some days I drop things several times, and I don’t know why.
If you’re interested in this subject, please reply with some of your memory symptoms, and I’ll keep a list. Thank you very much.
I should also add that I have a PhD in Analytic Philosophy. May concentration is Philosophy of Science and something called the "Demarcation Problem." That is the demarcation between good scientific theories and studies and those that claim to be scientific but are really not. For this effort I have studied the methods of several scientific disciplines and read easily over 1,000 studies.
I think I am pretty well positioned to get a good letter together for the Stanford Narcolepsy Center. I'd love to share it with you when I am finished.
It's time for us to be taken seriously.
Thanks again.
-TimI am compiling data on our memory problems for a letter I plan to send to the Stanford Narcolepsy Center. The letter will take the form of a proposal for study.
I'm really convinced that there is a feeling among researchers that the fact that our memory problems don't show on standard memory tests means there isn't a real problem. We KNOW THAT IS NOT TRUE!!
My memory issues are a huge part of my life.
I will not include anything without permission. Also, I would not share your your community name, real name if I knew it, or even the date of the posting.
Thank you very much for any help.
Narcolepsy has affected my ability to stay on task. Doing any type of paperwork can take days or even weeks and I've completely lost the ability to file our important papers.
I've lost the ability to put my thoughts on paper in any concise way.
Hi
. I see you are new here. Welcome to the community! That must be very frustrating. Does that impact your ability to work or are you retired or on disability? Thinking of you. - Lori (Team Member)
I find accessing stored knowledge really difficult. It's like walking through a dense fog at a snail's pace. I struggle with connecting knowledge, like knowing two streets, but not the intersection in-between, if that makes sense.
Sluggish working memory frustrates me a lot.
I write down almost everything so I won't forget. If I'm about to do a task, I'll repeat it in my mind (using your example "coffee, coffee, ..."😉 until I've done it.
I also set down my things at designated places (keys on desk or bedside table). If I don't, it takes me a long time to find them again. Things in use better not leave my field of view. Same with carrying something, I continually remind myself of it or purposfully focus on the task. The only things I might not do that with are phone and keys, which leads to them meeting the floor occasionally. Until I saw you mentioning it, I didn't even think about how often my phone randomly falls out of my hand.
What I also do, is process feelings connected to memories very quickly. I might remember that we fought an hour ago, but can act as if it had been days. Sometimes it is hard to differentiate between memories and dreams because neither has a strong emotional connection, and I often mess up the timeline of events.
Automatic behaviour when woken up is interesting. Apparently I can do math in my sleep - and also promise you anything to get back to sleep.Well done thank you.
