How can I be objective about my own brain health? Some personal reflections.

When things go wrong, or make me angry, that's when I tend to post my thoughts to Facebook.

Sometimes I make positive posts as I'm coming out of a slump, which tend to be a form of self-encouragement. When things are very bad or very good, I'm not on Facebook at all, generally. I also don't tend to post when I'm mentally at my best. That's when I'm doing catch-up projects for the times when I was not doing as well. I post a lot of things just to make sure I have a record of an important event. Everything I post gets archived and indexed for personal searches on Evernote, and often Facebook is the tool I use to overcome memory difficulties, by sharing what has happened. Posting creates records, and it also involves others. Involving others ensures my continuing awareness of my own life, because other people talk with me about my posts, and remind me of my own life in a social context.

However, excessive posts create an overall negative picture of my life. Recently I have started noticing that many people seem to believe I have nothing to contribute. I don't feel that's true, although honesty demands I acknowledge it is true, sometimes. I believe I have finally crossed the point since my head injury that I am aware and sharp more hours of each day than I am slow and confused (although I'm never as sharp as I imagine I once was...).

It is hard to decide what activities are most profitable. The obvious things tend to be so draining on my mental focus that it's hard to distinguish between the things that are actually hurting my health and the things that are helping me get stronger. "No pain, no gain" is what I have believed for a long time, but recently the wise choice has been don't push too hard or you'll go backward instead of forward.

My current strategy is to make sure I cover a group of "basic" activities that every healthy person should do: Bathe and shave, plan meals and snacks, and don't let feelings push my appetite. Do something physically active each day, track the time, and keep increasing it. Do something mentally challenging each day, even it it's just a puzzle, but don't let the mental fatigue push me to the point that I need to take a nap sooner than I would other wise.

Keep scheduling naps rather than allowing how I'm feeling to dictate them. (I'm down to 16 hours of sleep a day. My goal is to keep it at ten hours, knowing my sleep needs will always be greater than most.)

I have made a new (probably strange-sounding commitment) to eat one ounce of dark chocolate per day, one ounce of walnuts or pecans (or almonds, if I run out of the others) per day, a cup of blueberries, (or the equivalent amount of resveratrol, zinc, magnesium, potassium, and vitamin C as supplements if we are out of blueberries) each day. A limit of 1600 calories per day, while making sure V8 low sodium vegetable juice plus fresh vegetables and fruit accounts for more than half of those calories. (My doctor ordered 1500 calories, but I at that level, I kept cheating and lying to myself, and was actually consuming more than 1600 calories when I tried to stay at that level, and I was feeling deprived all the time, which probably accounts for the difficulty. 1600 seems ideal to me. I loose weight at that amount, but much more slowly than I would at 1500, but I don't catch myself "forgetting" about things I should be recording.

Also on the list is to do something social each day (mostly this means not squandering the opportunities that present themselves by keeping mentally alert as much as possible), and following a generally consistent schedule and chore list. Finally, tracking daily progress via notes and a daily written reflections so I have an objective basis for evaluating my progress.

I want to locate or create a daily set of questions to answer to make my daily progress easier to evaluate. A big problem with recovering from mental difficulties (in my case because of a brain injury) is the tendency to feel better because I'm less aware of being worse, and vice versa--the days that feel the worst can indicate greater awareness, and actually would objectively be the better days. I'm not satisfied that I have established a truely objective means to evaluate my day-to-day progress even yet.

My most recent example of this dichotomy (how I feel versus how I am) was when I got the knee injections of cortisone toward the end of August(?). The lack of pain was amazing, and my impression was that I was doing better mentally also, but as the pain slowly returned, I became more and more aware I had actually slipped mentally. Now that the pain is beginning to come back full-force, my mental clarity is obviously better, not because I feel better, but because my writing is clearer, and my awareness of my deficiencies is stronger than ever. (The beginning of next week, I'm getting a lubricant injection in both knees to make up for missing cartilage. The lubricant won't ease pain as the cortisone did, but it also won't have the negative effects on focus and memory.)

I think my best posts have been the ones I have written to help someone else through a problem. One of my goals (which again, will be difficult to measure objectively) is to use this principle (of focusing on others) to benefit myself.

The roles of confidence and faith in recovering after a TBI

The items in the list below are the results of a brain-storming session I indulged in prior to writing this post.

Confidence and Executive function

Confidence and Motivation
Confidence and Focus

Confidence and Rebalancing Left and Right brain responsibilities

Confidence and sequential thinking

Confidence and Event-Memory

Over a lifetime of learning, each of us continually builds upon a personal model that represents our understanding of reality, or "how things work." A brain injury, by changing the way our own minds work, can make our previous mental models obsolete, and can result in a crisis of confidence that can be more disabling to us functionally, than it is to our actual capability to recover.

A few moments ago I had an epiphany in which I realized that confidence enables a person who appears to be functional after a brain injury to be able to work effectively without succumbing to sudden overwhelming mental exhaustion as we doubt and test and retest the basic assumptions that form our personal models of reality.

Confidence is not just an attitude. It is intimately connected with the years of experience of successes and failures that went into building the personal mental models with which we understand the world around us. When a brain injury disrupts our personal balance between left and right-brain thinking, there will naturally be a crisis of confidence during the transition. If sequential language-oriented management of our mental model has been compromised, and is in the process of being replaced by a more visually oriented management process, we may recognize why we previously thought the way we did, but if we can no longer test the and verify the trustworthiness of our thought processes as quickly as we once could, we loose confidence over our entire sense of reality. Every premise must be re-tested, and in some cases, new and possibly even better reality models may result, potentially improving us. However, if we do not understand the role of confidence and the need to risk trusting our new perspectives as we chose to trust our previous perspectives when we were younger, our confidence may never be restored, and we may forever be caught in a preparatory mode of rediscovering our personal sense of reality. At some point, there must be a transition from questioning everything, to trusting our own judgment once again, even if our "new" judgment does not have the benefit of years of trials. We must start over in learning to trust ourselves. Yet, having already navigated this challenge in the past, it should not be as difficult, if we choose to believe in ourselves as we once believed.

When I speak of "functional recovery," I am speaking of how we recover our functional capabilities, as opposed to how we may have hoped to recover old abilities via physical healing. Functional recovery involves accepting that some of our losses were permanent, and won't be coming back. Functional recovery means finding new ways to solve old problems. It also introduces the hope that our more experienced minds may come up with superior ways to do things, which may help us turn some of our losses into gains. I firmly believe that last point should become the basis of our hope for the future, that we should not hope to be "nearly as good" as we were before, but that we should see the changes we are being forced to make as an opportunity to build a better foundation for a more efficient and more useful model of reality.

Perseveration - Persistent Repetition After Brain Injury

I stumbled across this video a few minutes ago. As with "flooding," I had never heard this term before I saw it used in a video by the Northern Brain Injury Association of British Columbia. The description of perseveration brings to mind my own difficulties with what I have called distraction "loops," several incidents of which, I have written prior posts. My distraction loops are due to a combination of mental fatigue and multi-step tasks in which a component step in the task interrupts my "big picture" of what I'm doing, causing me to either finish the subtask and then, having forgotten the reason for the subtask, causes me to wander on aimlessly, or in the other common scenario, realizing I have lost my sense of what I'm doing, I go to my notes, and start the same task over, eventually coming to the distracting task, and repeating it, often loosing hours before some external distraction finally causes me to stop acting in a half-awake mode, and enables me to stop and focus.

I fear I have not described this ongoing difficulty well. I may revisit this post when I find a way to describe the experience of "distraction loops" better.

Flooding - Becoming Overwhelmed After Brain Injury

I've never heard of the term "flooding" for mental overload, but this is precisely what I deal with multiple times a day when I warn the people around me that I am near my mental fatigue limit. I used to have nearly a half hour from the time I started noticing the mental shutdown until it made me unable to handle simple tasks, but that time has shortened considerably. Now I often feel the shut-down symptoms only moments before I "crash," which means if I'm driving a car, it's time to pull over, regardless of traffic or other considerations. If I can beat the "crash," and get some rest before it overtakes me, I can be "good" again in ten minutes; but once I crash, it can take hours to recuperate.

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/