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Anatomy of a Complete LBD Cognitive Cycle

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

to say.

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

it up.

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.

Final note: if this last attempt at fixing formatting doesn't work, I need to move on.

5 Replies
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Sadly as I read your post, I get most of it... at least at this moment in time - my time. You just articulate it better than I could.

Tim

Reply

Tim; I have written alot in my day and its always come easy to me. That said, articulating these states in such a fashion as others might understand is the hardest thing I have done. Ever.

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Reply

Excellent piece! I could have nowhere near described it as well. As for your speech, perhaps it’s where I suffer many of the same aphasia symptoms but I have absolutely no problem understanding what you’re trying to say. To me, it is not stuttered or stumbling, it is normal speech. Anyway, just wanted to let you know my feelings.

Reply

Thanks for spending the time to lead us through your day, Jeff. It's very insightful.

Couple of thoughts: does Beth know that she's not getting through until you've had coffee/CBD, etc? Might be a useful data point for her.

Also, does peak cognitive clarity typically occur between 9am-noon each day?

Reply

Christian, two very good questions with trickier answers:

1. Yes Beth can tell almost immediately if she is getting through or not; sometimes its me that suddenly realizes she is going on about something, the subject of which I have no clue in the world.

2. No. First there is no single cognitive peak or valley. Depending on what seems like a hundred variables, these cycles can and do happen it very irregular intervals, making pattern detection and isolation a cast-iron you know what. IOW, *this* is what happened *that* day. The next day was pretty much fog much of the day and the one after that (today), well, that one vanished. I recall feeding the dogs at 6:00am and a few minutes later my wife was getting home from the dispensary at the end of her day. So like 9 hours, poof. Nope no pattern, no predictability..

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