Execute Function Disorder: The bane of my LBD existence...

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Execute Function Disorder: The bane of my LBD existence...



Overview: This is a sort of analysis of specific symptoms presented in

my Lewy Body Dementia. Part of the reason I post this is to have

better minds than my own sanity-check it; the other part is as my own

LBD developes, I am finding more and more that what I assumed to be

true about things like dementia is almost criminally incorrect. That

part is for the people who don't have LBD...those that do really don't

need this explained to them, its something they live with

everyday. What I describe here may be more or less severe than what

you have; as the gas commercials used to say, your mileage may

vary. One thing I learned from this is a far better understanding of

the term "confusion", what it is and what it is not. It is my firm

belief at this point that EFD is the actual root cause of much of what

gets writteo off as dementia.



So what is EFD? In the case of LBD and related illnesses (sounds we

have collectively caught a cold) its when the front lobe of the brain

is damaged by the protein deposits. When that happens, the patient is

said to have lost the ability to multitask. What is multitasking? In

general terms it means doing more than one task at the same time. My

speech pathologist will argue until the cows come home that humans are

incapable of multitasking but I disagree. The example often reached

for is something physical like painting a house while you drive a car

to the store which is patently impossible. However as an ex-software

engineer I understand multitasking to be the ability to perform more

than one mental task at a time. I am not going to get into quantum

computing arguments with anyone thinking I mean literally at the same

nanosecond...I am referring to the fact that while you think you are

doing one thing, you are in point of fact doing many things at

once. In the foreground of your mind you might be thinking about doing

the dishes that are in front of you....but somewhere in the back of

your mind (probably because you are bored with the dishes and are

washing them more or less on autopilot or automatic) you are figuring

out what to make for dinner or more simply what you are doing next. At

the same time however you are also breathing when you need to, heart

is pumping, nerves are alive all over your body sending information to

your brain, from your hands in the hot water to your ears listening

for the doorbell to your eyes perhaps looking at the other-wise empty

kitchen. All of this (and a LOT more outside the scope of this story)

is a separate input to or from your brain. Much of this will be hard

to understand for normal folks because its stuff you don't realize

until its gone or worse, sporadically gone as it is in LBD.


Now if you take the accepted definition of EFD and apply it to the

simple scenario above you will start to see what my day is like and

how completely EFD can control your life depending on severity. I

might start the dishes with them in mind but it can as little as the

need to pee to completely derail the dishes-task...the process is

depressingly simple and obvious in 20/20 hind sight: Doing task A,

signal B (hearing might be doorbell, sight might be someone waiving at

your, internally the sudden need to sneeze or use the bathroom, it all

amounts to the same thing: your focus is yanked to that, the initial

task is effectively "gone" from your mind because of the EFD and you

can't think about two things at the same time and since the biological

urge (in this case) over-rode your attention/focus, thats all there is

and ever was in your universe. Thats all it takes sometimes. But say

you didn't need to pee and you are happily washing dishes, wiping and

rinsing each dish and placing it in the rack to drain. But you start

focusing too much on dinner and your hands are left on

autopilot....and because of the EFD, the "autopilot" skips a groove or

something and the hand that puts the dish into the rack instead drops

it on the floor, back into the sink, anywhere but where you needed

it. This is a common problem with LBD and I think Parkinsons patients

where limbs that are supposedly at rest (and not being micro-managed

by the brain) moving and doing things on their own. In the same way

EFD can result in my hands that are doing dishes doing whatever they

like, I can see the same thing at play here as well. In computer

parlance its like your sub-program running your hands crashed.


This simple principle can manifest itself in hundreds of

ways....blowing your nose for example, something you have done since

you were a child, you do it now almost without thought. I said

"almost"; imagine the fun when you are blowing your nose but your mind

wanders even a little and bang! One hand or the other is just kinda

wiping things all over your face on its own and you really have to

force it to do it right....


...swallowing is another one. The swallow test is something they give

stroke victims as soon as they are stable. Like many slothful people,

we sit and watch movies and such while we eat but in my case I find in

cases where maybe the movie is too interesting, my ...swallower for

lack of better term, forgets how to do its job and the food just stays

there. Its not stuck like needing the Heimlich maneuver or

anything...I find in this sitution if I shut out all outside input,

calm down and sort of mentally micro-manage the process of swallowing,

I get through it fine after 4-7 tries (at which point I stop eating

and drinking for several hours before trying again)...


...breathing is another that has plagued me longer than almost

anything else....if I concentrate or focus on something for too long,

I suddenly find myself gasping for air because I stopped breathing. No

air-way obstructions, etc. If my mental focus is elsewhere (like say

transplanting a flower) it stops and if my overall task takes too

long, I actually feel like I just did a dozen laps at the track.


...and then there is the physical damage. I am walking from one end of

the house to the other and perhaps am carrying say a basket of

clothing for wash. I am focused on the basket and getting to the

laundry room...my vision of the floor in front of me can be

effectively negated. Like a lemming I will walk into walls, tables,

trip over anything in my path and sometimes I don't even need

something to trip over if I am concentrating on what I am doing

enough. My wife asked me the other night why my legs were all scraped

and scarred up...well honey, its this.


...and just this very morning the shutting off of input when you need

it bit me bad. I had placed a dish of something to warm up in the

microwave oven, with a second dish that needed to go in when the first

one finish. When the microwave turned off from the first task, I

opened the door with one hand, holding the second dish with the

other...at this point my eye-sight went no further than the second

dish; effectively I saw nothing in the microwave so I just took the

second dish and rammed it in there, spilling both dishes all over

hell. And yes to me it seemed as if the first dish just magically

appeared in there, about the time I was watching the contents dribble

out of the microwave, over the gas range and to the floor. I don't

even try to explain things like that anymore; its just another

side-show in this carnival of the absurd we call Lewy Body Dementia.


...and there is what I call the newborn-calf syndrome; I might walk

normal one day but if I am not concentrating on the act of walking, my

attempts to walk with any level of coordination results in a very

newborn-calf like awkwardness to my gait. Doctors like to see this and

write it off to some intense pain I am feeling but its just the EFD; I

gave up explaining this one long ago.


One key factor in all of this is the variability of symptoms in LBD

patients; I can cycle from intelligent to drooling in minutes and stay

there for hours, only to pop back later that same day. I do not have

absolute proof yet but I am pretty certain this variability is driven

by two main things: how much external stimulii you have around you at

any given time and your personal/mental/physical/whatever ability to

deal with it or more to the point, prioritizing the input while not

ignoring the important things. A dog howling in the background has no

impact on what you are doing and can be deprioritized whereas the

ringing doorbell should probably take a higher priority than the

dishes. This is what I mean by your ability to deal with it; in an

up-phase, that can happen whereas in a down-phase (cognitively) you

have a very hard time evaluating all of it and can seem to go into

"brainlock", also labeled as confusion. If you have less input (no dog

howling, less or no other people around you, etc) you can usually make

the easier choices because the EFD won't let your brain consider all

of the choices....your brain might handle "ok dog is howling...ok I am

doing dishes.....um the doorbell is ringing....ok there is a dog

howling...hmmm doing dishes..." etc. Lather, rinse, repeat. In a state

like that it feels impossible to make the correct choice. Waiters in a

restaurant can present the same problem by suddenly offering you many

choices on something that, when combined with all the other input in a

noisy public place, makes that evaluation of his options almost

impossible and you grab either the last thing you heard (to break out

of what I call the stupid-loop) or you ask them for a suggestion and

grab that, regardless if that suggestion would seem nasty to you at

any other time.



By this point I am really hoping that even folks who don't have this

start to understand how pervasive the effects can be.....because now I

want you to apply what you just learned (or re-learned) to other

scenarios associated with classic dementia...this conversation may

start to sound like an attempt to answer how many angels can dance on

the head of a pin but this is all I have and I struggle to understand

what is happening to me.



-- Memory loss or short term memory loss. Can recall things from long

ago but not what we had for breakfast, that sort of thing. My first

question is this: is it memory loss if the memory never made it in

their in the first place? I have had coversations with people where

if I suddenly thought of something, my hearing is almost entirely

shut off. Not physically but since all input from my hearing gets

shut off (and other senses as well), for me that time didn't

happen. I have no memory of it and now its instantly "later". I

never had the memory of the time to lose in the first place but its

gone just as much as if I had known what happened and forgot it. I

can directly map the frequency and severity of this loss of aural

or visual input directly to the amount of distracting input I have

in my environment at the time, combined as I say above with my

ability to deal with it. Like clockwork. I can only prove this

empirically but its an absolute fact of my life at the time of this

writing.


-- Confusion part one: Take the simple loss of time and/or memory of

input when taking a walk someplace you know. You start at the

beginning, let your mind wander even a little and you suddenly find

yourself someplace unexpected, almost like Scotty on Star Trek

beamed you there. In my case when I find myself in these positions,

the reaction is almost always the same: utter surprise. Outwardly

this surprise of finding yourself somewhere with no clue how you

got there is one of the many signs and symptoms associated with

dementia.


-- Confusion part two: This is where it can be really hard on the

patient. Same scenario as Confusion part one but in this case, your

ability to deal with it might be weaker at that point for any of

the reasons LBD acts like this and suddenly that same scenario

looks like this: You find yourself someplace you didn't expect

which puts your mind into a panic (so where am I then?) and thats

where the EFD rears its ugly head and turns it into a potential

horror show because instead of recognizing your are in a different

part of your house or property, your mind (in that initial panic

reaction) tries to do what it has done all your life and tries to

assess as much about your surroundings as possible to determine

your location, almost by reflex and the EFD just isn't having

that. What ends up happening to me sometimes is the inputs still

come in (sense like sight, smell, sound, etc) as well as a check on

my internal mental state (something you find yourself doing alot

with MCI) but the EFD doesn't let you take in that much input at

once and ....this is hard to describe but go with me on this. Have

you seen a war movie where there are light strobes going on and you

only can catch short glimpes of the action? EFD in this situation

is alot like that, when you are in panic and stressed, input from

sound and other sources as tiny flashes so brief you are not sure

that is a dog howling, or you feel a wind if you are outside or the

objects around you, normally recognizable are difficult to

recognize as a familiar object. Only once the inputs are reduced

can you isolate any other input long enought to gain familiarity

with your surroundings. This too outwardly at least is another

symptom common to dementias and I believe 100% attributable to

EFD. I proved it to my satisfaction by altering the amount of

inputs at different times and in different recognized states and

observed the results.


-- Confusion/loss of cognitive ability: if the EFD is less manageable

on an occasion where I need to pay close attention to something

being said, I have a choice: I can listen well and

understand/absorb practically none or very little or I can limit

the amount of what you say that I pay attention to and try to

absorb the bigger picture by mentally reading between the lines. In

this sitaution you could explain how to do a task to me very

carefully and the more I listen to you, the less I actually retain

about how to do it and if turned lose on the job, will probably

screw it up if I can even start at all.


-- I have not had hallucinations yet nor for-sure delusions and some

of the uglier aspects of this so I cannot speak to any impact EFD

might have on that..


As an engineer I was trained to never present a problem unless you

have at least a potential solution in mind as well. Since EFD is

caused by out-and-out brain-damage that is unlikely to repair itself

in my lifetime, it would be by definition a waste of time to try and

fix it at the source. All that is really left is symptom

management. If you can't fight the EFD, then to do an Art of War thing

on it, deny it battle by taking steps to minimize how much stimulii

(internal or external) can interrupt your process. Also, since your

brain is now mis-wired to only do one thing at a time, I try to use

that to my benefit. Any job that would be screwed up by EFD I try to

make a stellar one by forcing that job to be task/thought one and

allow myself to fall into an almost-OCD like state to get it

done. Once you accept the fact that you can't count on your ability to

multitask, use your intense focus to accomplish that one thing at a

time. All of my fixes are pretty situation dependent but hopefully you

can extrapolate to find what might work for you.


For example I found early on I was the worst one to send on a hunting

trip to find some lost item in the house. Almost always ended with

failure because of all of the above reasons, I find myself in a room

asking myself how I got there or why I was there in the first

place. Now our house as many dark corners, just how the lighting and

such worked out so to locate something small you find yourself with a

flashlight alot and what I discovered is I could use the end-point of

the flashlight beam to keep me focused and on-task. I don't know why

but even shining the light around a well-lit room somehow kept me

on-task that I was searching for something and I should keep

looking. After I while I found this to be so helpful in keeping me

focused on other things (like transplanting a plant), using the EFD to

get the job done. It just feels better when you can accomplish even

small things you set your mind on...the converse is it feels like

absolute shit when you can't accomplish anything you try. That

flashlight trick alone can make so much of a difference, I got one of

those hats from Lowes with hidden-ish LEDs in the brim that can act as

a "head-light". I use it all the time; it helps keep me focused on

what is in front of me and because what I am working on is illumated

more than anything else in my field of vision, the other things around

me are far less likely to act as a distractor for the EFD.



I don't let myself attempt to carry more than two of anything if I

have to walk somewhere in the process. That amount or less, I tend to

make it; more than that I am prone to dropping whats in my hands or

walk into tables/walls/etc. Takes forever to unload the car, things

like that but its better than doing nothing.


There are more of these strategies but those can be discussed at a

later time....


Peace Jeff



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