One thing I have learned since starting to have to deal with LBD
first-hand is that there are alot of mis- or non-understandings about
it. One of the bigger ones I keep running into is a damned-near
complete lack of understanding of the Lewy Body Cycle. I have sort of
described them objectively elsewhere; this will be a sort of day in
the life thing only it will reveal what it is like for me to live
through these everyday.
04:00: I awaken from my token number of hours of sleep, brain is
operating at about a 5/10. My wife is already up as is her habit and
she tries to tell me about a few of the bigger stories in the news.
Little sinks in. I can see the disappointment on her face that I
didn't share her outrage about something but the truth is, I
understood about 5% of what she said.
I attempt to read the news from last night. Some stories get too
complex too quickly so those I skip for another time or state of mind.
The ones that are not too complex, I don't really understand the
import of the articles' subjects so can't tell if I need to care or
not. So lacking more information, I don't.
04:30: After drinking from an empty coffee cup for the past twenty
minutes, I realize I must make some if I am to become caffeinated
today. Walking to the kitchen is a slightly more accident prone affair
than I would have liked but when the fog is thick, the limbs don't do what
they are told or when they are told to do it. I get the water into the reservoir,
get the filter into the holder, grind the coffee and.....dump it on the counter
next to the ilter. After using two or three of my best cuss words, I get the
coffee into the filter and everything into the maker. One button press
later we are off to the races. Well somebody is.
04:40: While awaiting for the life-giving properties of the coffee
bean, I sit up intently listening to Beth telling me about more
stories from the news. I nod alot and try to follow but it just comes
out to me as "Hjkhjety uif qrhqig ryqo ehrshfoq." Hey I am waiting for
the coffee and what it might do about jump-starting my brain for the
day. It can only get more comprehensible from here.
05:00: Coffee, CBD and about 4 joints of my Black Diesel and the fog
begins to clear. This is a common occurrence with CBD and the fog;
before the day is like I am living in a bubble of incomprehension.
After and its like the bubble pops and suddenly I am aware of more and
more things around me. I see the sun coming up, I really smell the
coffee that was brewing, I can understand most of what my wife says, I
find myself curious about what I might do today, what is possible.
Before this I am content to just sit, not out of laziness but rather
simply not understanding (and therefore, not trusting) anything around
me. So sitting is a safety move. The first time things were worse than
we thought and Beth left for a week, I sat in a chair not moving for
three days near the end.
In any event, it is at this point that I feel the most enthused, the
most enabled to face a real day. So I pop open my laptop, open a
terminal and run my "newtodo" program I wrote years ago. I just type newtodo
in a terminal and the app creates a new date/time stamped to-do file in my
documents folder, then opens it with my editor, ready for me to start typing
things in. I have always hit the ground running, maybe an after effect of years in the
Army but I have always gotten up going in 4th gear and needed a "to do
list" to keep all my ideas/tasks/goals straight. Thus now it helps in
a couple of ways:
1. It does capture what I intend or wish to do.
2. It provides a kind of recognition as I accomplish each thing. Thats
more important than ever now because its one thing to forget what you
intend to do but its way worse when you forget what you have done,
simply because it reinforces the idea you are too far gone to
accomplish anything worth remembering. The list saves me from that.
In a weird way it also provides a sense of time I don't normally have.
I think it has to do with the frontal cortex but since this got bad, I
can't "see" the future, can't look at the day, the week, the month,
whatever and see it as a block of time in which I can accomplish
something. In a down cycle, in a fog, all time beyond about five
minutes into the future is completely opaque. I can envision the day
no better than I can envision the contents of a locked box I have
never seen open before. When the fog lifts, I can see reasonably well,
at least the day and sometimes the week.
08:00: My fog is about as fully gone as it gets; as such I try to plan
at least the most interesting things for my day.
Slight digression: In my prior life I was a computer programmer.
Because that sort of work requires basically all of your mental
systems functioning at peak capacity, writing software has been off
the table for me for years now. Sometimes I sit with my old
development environment up in front of me; at best I just sit and stare
are the tools that were my companions for my whole life, now little
more than strangers.
09:00: Today is starting to feel better than normal. Not sure why but
I am used to shit that I am "not sure why." In any event, let alone
being able to see the day, the possibilities for some reason feel
within my reach as well. So with all this coming together, my mind
seizes upon one of the more frustrating aspects of my LBD, the damned
aphasia keeping me from talking like I want. As I was doing grow
chores that morning I realized I had one friend interested in how my
indoor "trellis project" was proceeding and another in my outdoor grow
of White Widow auto-flowers blooming on the side of the house.
As is my habit in those situations I take a short two-minute video of
each area, narrating as I go. When I go to review them I like the
video but the audio is beyond wrecked because of my aphasia my words
just going this way and that, saying 100 words and really only 10 are
meaningful. Ugh. I can't stand it; the subject is right, the video is
right but narration/dialog is crap and basically unfixable.
Normally this would be a time of anger or frustration but today, today
its different. In this most upper of up-phases I can not only see the
problem but for the first time in a very long time see the solution as
well. The problem is that I need to make a whole series of videos for
my wife for when I can no longer grow (which is coming soon) our
cannabis but cannot narrate them properly so the message gets lost.
And in the flash I see the solution like this:
1. Make video with my crappy narration.
2. Strip the audio from the video.
3. Run the audio through a STT (Speech To Text) engine to generate a
text file with the "dialog" from the video.
4. Here I would hand-edited the dialog to correct my mistakes and make
it seem coherent and cohesive.
5. I run the resulting dialog through a TTS or Text To Speech engine
to turn the dialog into perfect artificial speech.
6. I convert the resulting speech file into an MP3.
7. I finally overlay this new audio file onto my existing video file.
Result: should be a clear and corrected version of what I was trying
This all makes sense so then I have to apply the engineers constant to
it, realizing this up-phase will only last so long, not more than a
few more hours at most and then I will no longer be able to complete
it or even work on it for that matter. Because I run Linux I have tons
and tons of apps available to me for free and one of those is a
professional transcriber tool which will do exactly what I need. As
such, I would not waste valuable time on that today.
That left things 4-6 to get working. Python is a powerful scripting
language on Linux, Mac, Windows and more and was one of the languages
I knew the best (the rest were deep systems languages I will never
touch again). As long as it took to look at that phase, I also
immediately saw how it could work. Since I was skipping the
transcribing phase this time around I just hand-wrote a sample dialog
as I imagined it would have been made from my speaking...and cleaned
The brain-fires were still burning. At first it just seemed simple to
make a single big MP3 file to supply the audio for the new version of
the video. Then things cropped up like realizing if I snuck out a
single minute of audio from the middle for some reason the whole video
would be thrown off, and brother at this stage of things, I am looking
to simplify shit, not make it harder. So the other solution was to
write a program to read the dialog, strip off each line, turn that
line to speech and then save it as an MP3 file. With the lines stored
this way, I could easily make changes to the finished product on the
fly. I have a video editor I use for all such work called OpenShot.
Using my audio this way, I drag and drop each audio element as if it
were a piece on a chessboard. In an instant I saw this to be the
superior solution and immediately set about making it real before my
brain dribbled out of my ears soon, and I join Forrest Gump as some of
Americas great intellectuals. The clock was ticking.
10:00: I am peaking in my up cycle. Things are click in my head like
they have not in a year or two. One of the kind-of tricks I had back
in my pro-coding days was that if I had a problem to solve with
software, and I can "see" that solution, writing the code, the actual
software itself, becomes nothing more than an exercise of simply
writing it all down. If I wrote down (coded) what I saw in my head the
thing would usually work.
Because I am still peaking, I can also see as I am going ways to make
it flexible by giving the user a choice of voice engines, such as
those from Goodle, classics such as espeak and Festival and more. Also
I realize that my move to keep the audio segments small, this might
also lend itself to being channeled through email, SMS, etc.
As an added bonus to this peak cycle, my aphasia is all but gone, my gait is more
sure and stable and eye/hand coordination seems fluid.
11:40: I am getting done, the app I wrote is in test and seems to be
working as-designed. The problem is I am seeing parts of the software
I just designed and wrote in less than 90 minutes....fade. The purpose
of some of it is becoming indistinct. The app is doing things and I
can no longer recall why I made it do that in the first place.
It is at this point I realize that I am now sliding into a down-phase
where I basically become Mr. Potato head. I knew this would happen and
I could tell when it was happening because any time I really over-push
myself mentally for too long, I begin to feel flu-like effects, almost
like I had a hang-over. And right at that moment I was trying to keep
my lunch down.
12:30: The up phase is done and gone. I tested the app the best I
could before I could no longer do so and now it was out of my hands.
Not only could I not understand my own code, I was mystified by my own
design. It looked like it was written by someone else, a stranger. And in a really
bizarre moment, I stare at code I had written an hour before and had the feeling in
my gut it was too advanced for me, I would never understand it.
Now you might think this would make me sad or angry or something. Sure
I regret not having more functional time, because you always want more
functional time. LBD teaches you not to pine for that which you are
unlikely to get. In addition, one of the fundamental things I wish
folks understood about this. OK say your family is sitting around the
dinner table. I walk in and set on the table a box with no
intelligible markings. Would you fear the box? Without more data
probably not. Now if you understood there to be a bomb inside, it gets
different. The difference between these two situations is what you
know or understood about the box. Well consider the many things that
go wrong/sideways in any demented persons day. Because the dementia
keeps you from fully grasping what went wrong, you don't understand
your failures enough to be moved by them, for them to trigger any
specific emotion. And if you understand something little-enough, you
will never be bothered by it.
13:00: Sliding deeper into my fog; can't really tell what day it is
anymore nor am I even sure about the time of day. I get feelings in my
gut that I should be doing something but for the life of me, I have no
idea what. After wondering for a while, I do the only thing I can do:
roll up a joint and get on with my dysfunctional day. Because the
down-phase is hitting now, I am pretty much done for the day, so video
games, cartoons, movies, these are the challenges with which I concern
myself now. And you know what? I am good with that. The cannabis helps
me get over the flu-symptoms and as important, it ensures I do not
dwell on my impending demise, lack of mental ability or the lack of
being rich. My wife asks me for a dinner suggestion and I can barely
get words out, let alone intelligible.
14:00: I am finding most of the video games I have too difficult or
calling for a manual dexterity that is simply not mine to have at the
moment. I keep forgetting what I am supposed to be doing in the game.
14:30; I give up on my PlayStation 4 games and decide to run my old
PS2. Games of that era were by definition several orders of magnitude
simpler to understand and simpler to control. Yet for some reason the
PS2 only is displaying in black and white today....I know the reason
why should be obvious but its not obvious to me...so I quickly abandon
that for my shows and my movies, all set for this exact state of mind.
15:00: I am watching Lost In Space (the 1960s show) and marveling at
the rich complexity of the plots and the snappy repartee of the dialog.
I tried watching a few other shows of newer and greater complexity
like the newer Battlestar Galactica and when that seemed too
difficult, I down-shifted to Star Trek...and some of that was still
too much to absorb and therefore enjoy...so I move the needle a few
inches deeper into the "Idiot" end of the scale and ended up with Lost
In Space. I know....Lost in F-ing Space...but that is the same reason
I keep games around from complex real-life simulations and VR to
simple Nintendo classics of yesteryear, so there is always something
that will fit my state of mind.
18:00: I stumble off to bed for the day, my gait returned to the constant
"Parkinsons Shuffle" we all know and love. I am in for a long night of
Naruto cartoons. Won't overtax the brain with that one. Naruto aired some
700 episodes over the 20 or so years it was on and some of the story arcs were
huge, like 26 eps per year for two years one story was. Well a while
ago I wrote some software to take all the episodes of this show that
went together, it automatically stripped out any credits or other
non-story related video, then stitched them all together into one or
more very long video files telling one whole story. One I have, The
Land of Waves Arc, is 7 and 1/2 hours of uninterrupted video.
Anyhow these kinds of videos are great when I am brain-dead. Like now.
I hope this helps someone understand someone else in their lives. I go
through these cycles every day for sure, sometimes multiple times per
day. Sane/Smart one minute, dumber than a box of rocks the next.