How I function from day to day with short term memory difficulty

This is adapted from something I wrote earlier today, explaining why I constantly keep notes and receipts past the point when most people throw them away.
Because of memory problems, I record meetings and I request copies of notes from any professionals I work with, including lawyers, doctors, dentists, and anyone else I work with who takes notes during a meeting. I also take notes, but they often make little sense to me later unless I can associate them with other information I gathered. Every piece of information I am able to collect, I transcribe recordings, and I scan and OCR text. So these pieces of information can be indexed and tagged for future searches. As I scan and OCR other people's notes, I often need to make corrections, so that I have basically rewritten their notes, but I also keep the original notes with them. I do that so the notes will be indexed in a way that I will be able to find in the future, when my memories have faded.

The input methods that have proven most useful are:

1) Automated phone recordings with indexed manual summary transcripts
2) Scanned and indexed receipts, instructions, and warranty materials (a daily task that with a fast scanner takes about 15 minutes a day)
3) Scanned hand-written notes that I made for myself during the course of a day
4) A backup plan for every commitment (every appointment goes in my hand-written calendar, and directly to Google Calendar via my phone or note pad if possible) I also ask for a contact card with the appointment time written on it. Then each night, I scan the card, Add it to my contacts database, make sure I have recorded the appointment correctly on Google Calendar, and then I link the contact card to the appointment record. I have automated reminders that will ensure any event on Google calendar will trigger a series of alarms on my phone, and I add other people to also receive those alarms if they will be affected by the appointment, such as when my absence will mean the car will not be available to someone else in the family, or in the case of long trips, to ensure I can have someone go with me. (I take my two-hour "active" window seriously. I don't want to get caught out-of-town in a confused state of mind with no one with me to ensure I make it home safely.)
5) I have a coach (trusted friend) who will keep asking me weekly about what I'm doing, what are my priorities, and who makes sure I'm not ignoring any commitments
6) A planning session each morning that mostly involves a daily template plus an automated calendar, a paper "to do" list, a "cloud-based" "to do" list (so I can enter things from my phone)
7) Taking regular naps before I get confused
8) A review session to add "tags" to my notes (make sure that words I might use to locate a note either exist in the note as text, or add them to a "keywords" list for each note)
9) A reflection session each evening to review my notes and create a short narrative of how my day went. I also use that time to write the current week's appointments and commitments to a white-board calendar I keep on the kitchen refrigerator in case I fail to keep other family members informed of my schedule and commitments.

If only the process of managing daily records didn't take so long, I could be functioning on a much more normal level. One thing I intend to work on next is finding ways to simplify steps for data gathering: especially learning to use voice commands for the computer and to dictate notes.

Even the most disorganized mind can follow a "to do" list if it is right there, with items to check off as they are completed.

I'm close to the point where I think I could accommodate lack of short-term memory if I could find a way to automatically create a set of connections to make up for what that my mind fails to make because of memory difficulties. I picture the ultimate solution as an indexing system that resembles a mind-map, that could encode the natural mental connections we all make between events.


If I ever get this system down, I may write a book about the process. I think it would be of interest to more than just people with brain injuries or other memory difficulties. I'm not ready for that yet. Right now, I'm making the system up as I go, and occasionally finding a short-cut here and there, learning which steps are less useful, and which ones prove to be most valuable.

How I use Evernote

I posted this comment to a post in a private online TBI support group in Facebook. After writing it, I thought it could be a concise, useful summary for other brain injury survivors to consider.

I have severe event-memory difficulty. I depend on Evernote with companion apps and devices to accommodate my limitations with minimal interaction.



I use an android document scanner that allows me to photograph documents I sign. It aligns the view and saves an indexed OCR'd PDF.

A conversation recorder and a transcription service store recordings of conversations with indexed transcriptions.

I also use Google Calendar with connections to Gmail and Toodle do task manager, which are all linked to each other, and Gmail forwards my daily agenda notes to Evernote.

I use a paper notebook from Moleskine to write notes I want stored in Evernote. The pre-printed lines of the notebook consist of a grid of tiny dots that facilitate Evernote's handwriting recognition feature.

I also use an inexpense fast document scanner to record all of my daily snail-mail as it arrives. I scan the envelope, open it, scan the contents, and store an indexed PDF of all correspondence, bills, (which I can tag with due dates so Evernote will remind me to follow up) and even advertisements that I may want to reference in the future.

All of the Evernote-endorsed devices and applications I have mentioned are accessible from within Evernote's marketplace.

Stronger focus, weaker memory: Is this improvement, or just a point within a cycle?

Though my memory still seems to be slipping, my focus is definitely improving. I was recently able to stay focused long enough to create a complex interaction of Google calendar events that allowed me to accurately post whether to expect income in the current week, based on a set of cycling events that are independent of each other, but contribute to the probability of receiving money.

I STILL, in the 34th month since my accident, do not have disability income. I am supported by a combination of regular gifts from family and a constant stream of unpredictable anonymous gifts, which I supplement by taking out retirement money at an alarming rate, since there is little likelihood I will ever be able to restore what I withdrew.

I remain unable to do PROFITABLE work. There's a difference between being able to work, and being able to work at a rate that makes employing me profitable for an employer who must pay minimum wage, when I frequently am not capable of putting in more than two hours of profitable work across twenty-four hours. I have no possibility or capability of supporting a family, or even myself at this point, and having been in this position for long enough that statistics suggest I'm as good as I'm going to get is frustrating, but I'm not without hope of beating those statistics some day.

Not being able to consistently stay focused for periods of time long enough to get things accomplished is my greatest disability. I can usually appear fine to others for a short period at a time, and I always try to do my best every moment of every day. In certain situations in which I am working with someone else who IS focused, I can stay at a job and improve their productivity enough to consider that work profitable, but I don't know many jobs that provide "focus coaching" throughout the work day, and some days my focus gets so bad that it leaves me in a confused state of mind that would make it dangerous for me to be away from home in that condition.

But our Social Security Disability system was not designed to recognize and deal with my kind of situation. To them, disability is an "on or off" situation, and focus tests tend to produce false results, because the test itself acts as a coach to keep me on-track. Left to my own devices, I start the day making a work list, get two or three things accomplished, and then hit an item that forces me to endure distractions that in combination with limited of short-term memory put me in a cycle of pointless repetitive efforts, resulting in hours disappearing from the clock as I aimlessly wander from one distraction to another, feeling more and more fatigued, and eventually believing I finished something because I remember starting it.

It is amazing how many evenings I go to bed feeling satisfied with a day well spent, only to awaken the next morning with no recollection of doing anything the previous day, and no evidence that I DID do anything!

Life at this moment is frustrating!

(and since limited event memory means "now" is always the only reality I know, it feels as if life is always like this, but I am intelligent enough to know from reading my own notes that what I feel is not necessarily real)


(Graphic was adapted from an image found at http://www.craveonline.com/lifestyle/articles/590027-are-we-there-yet-never-lose-luggage-again)

The emptiness of memories lost

Just now, I glanced at a Facebook post I made on Father's day this year in which I said, "saw 'Man of Steel'" and I thought, I'd like to see that movie some day. Then I realized as I read the post, that I HAVE seen it, with my daughter (it was her Father's day gift to me). I remember a while back that I embarrassed myself by commenting that I'd like to see that move ("Man of Steel") in front of her. At least then, I could assure her that I remembered her taking me to the movie, I just didn't recall the movie. Now I don't even remember those images that enabled me to say I remembered her taking me to the movie. I just remember the fact that she did, as if I read it in a book.

No recollection remains, and I find that intolerable not to remember special events in my own life except as footnotes I read on a calendar. It feels as if life stopped for me on the day that car hit my bicycle, and I woke the next morning in the hospital. I almost said, "with no recollection of the day before," but that's not true. I remember reading something I wrote, that at the time I remembered what had happened when I woke up. I just don't remember remembering.

It feels as if I am not experiencing my own life! I'm just reading about it in a book, yet there's a difference. When I read a story in a book, I imagine the events. No images form in my mind when I read about my own life. It's as if the hole where my memory should be, blocks me from re-imagining the memory.

Please pray that I find a way to overcome this complete loss of memory over time.
The emptiness left by lost memories feels intolerable.

It concerns me that this post appears so dark, when my actual attitude is hopeful and not at all depressed (Ok, maybe a little depressed, but not the dark lingering kind of depression, but rather a passing sense of loss). I suppose this description of my experience with memory loss is a bit depressing to read, and I chose this graphic by Marie Sivak (Sivak, In the make: Studio visits with West coast artists) to represent a life trapped in the binding of a book. But don't read depression when you read my description of emptiness. Yes, I feel loss, but I also feel hope. Maybe I'll recover some day. Maybe I'll find a way to accommodate this loss with some other way to remember. I am NOT defeated in any way.


Reference:

Sivak, M. (Photographer). (2014, January ). In the make: Studio visits with West coast artists [Print Photo]. Retrieved from http://inthemake.com/marie-sivak/ 

"You Are Not Alone" : a message from the Brain Injury Association of Ame...

Finding vocational resource services for brain-injured people

This is part of a letter I wrote to an out-of-state vocational resources service. I have been looking for resources in Indiana for the last 29 months, with no success.

...I have found these Indiana sites, and have called and spoken with the head of [an]Indiana Vocational Resources organization, and have not found any programs for brain-injured people.

http://www.adaindiana.org/
http://www.in.gov/fssa/ddrs/2636.htm
http://www.biai.org/
http://www.topindianapolislawyers.com/.../

My own difficulties are a nearly total lack of episodic memory, but with increased ability to recall facts that helps compensate. Journalling has proven to be the most useful way to adapt to lack of episodic memory (which my neuropsychologist calls "sequencing"). I am also plagued by mental fatigue that builds rapidly any time I do any kind of mental "work," that I can feel depleting my mental energy reserve. As I work. I can feel parts of my brain shutting down. Mastery of numbers seems to go first. If I continue, I eventually get slurred speech, and get caught in time-consuming "loops" of repeating steps up to a point that requires me to look something up....then suddenly I feel confused, and start the same task over. These loops can steal hours of my day without my awareness of passage of time. Usually it takes having someone else interrupt me to make me conscious of what I'm doing. I rarely let the confusion get that bad. When I feel the first symptoms coming on, I take a caffeine pill to extend my workable time a little, and I bring my work to a close, with notes to myself about how to continue. Then I go take a nap. My productive cycles average 2 hours, but may take half and hour, or four hours. The nap time required to refresh myself can take as little as ten minutes, but usually takes two to four hours.

If you can help me find Indiana resources that can help, they would be greatly appreciated.

Compensating for lost abilities

A friend commented that her hearing loss in one ear (due to a head injury) is becoming less apparent to her. Her brain takes what she hears from one ear, and gives the illusion of hearing from both ears. I responded:

I'm sure that's possible. People who suffer blindness often talk about enhanced hearing and an enhanced sense of texture. 

I lost much of my episodic memory, but I believe my memory for facts is better than it ever was (probably a compensatory change). Combined with my notes and automated evidence collection with various applications from my phone and computer dumping information into Evernote, which I daily tag and organize, I have a sense of what has happened each day that often comes close to episodic memory. (But make no mistake, natural episodic memory has a sequential quality that constructed episodic memory does not have. It's sort of like the difference between seeing a person or seeing a black and white photo of them.) 

My difficulties with tracking time have also caused my philosophy to change. I think in terms of "now," and both the past and the future have the feel of something I read in a book. Only "now" seems real. I also think in terms of "seasons" instead of activities: such as deciding today is a time for doing laundry. I may not get much laundry done, but thinking that way enables me to ensure routine tasks get done, whereas schedules tend to get forgotten, because my brain doesn't work that way now.

The one area that still "sneaks up" on me are tasks I start, only to discover I already did them. But even that annoyance has become so common that I shrug it off rather quickly now, when it happens, so in a sense, I'm beginning to feel "normal" in spite what is obviously still not working. I still hope that in a few years I will recover enough to not need disability, but I'm still fighting to get it. I will probably know whether I am considered "disabled" by the end of next month.

Regardless, the bottom line is, that unless there is work that can be done on a flexible schedule, 2 hours at a time, and no more than 6 hours a day (including travel time) there probably is no kind of work that I can do