Update: I originally wrote this a little ways back. All of it still applies but I needed to (re)post this so that what I post next will make sense, or at least as much sense as I am making these days. That might qualify me for talk-radio but writing things this complete is a tough row to hoe anymore. The follow-up event I am documenting now is something that is a particularly evil extension of this, one that my dear friend Randy (Poppy something on here) knows well and has asked me about in the past...a secondary reason for the repost is to spark discussion if possible on this as this is almost the single-most heinous impediment to my daily life right now.
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.
UPDATE 21 Sept 2019: as of now mild delusions or at least ones I can talk myself out of happen now and visual, audible, uhm taste-oriented and smell oriented "hallucinations" or false-inputs are now kind of a norm. I don't let them freak me because I if I can see a monster in the room and the dog doesn't budge, then the monster isn't real and is ignored out of hand. If I hear what sounds like someone trying to beat down the front door to our home and the dogs don't go crazy or even glance that way, again, false alarm and I move on with my day.
There are more of these strategies but those can be discussed at a later time.... Peace Jeff