Skip to main content

Lewy Body Dementia: A Study in Dualities

Lewy Body Dementia or LBD has so many things it does to really screw with the patient it can boggle the mind. At first blush, the up and down cycles we have where we are normal one moment/hour, demented the next, normal some time after than, fruity like a cake later in the day, the party never ends with us. The hard part is the constant effort it takes to keep up with reality, something that can leave us exhausted at times.


But I am not writing about that duality, thats a burden unto itself. Today I am speaking of another one, one that almost seems required by society. That is this: there seems to be a very very common feeling that if a person sees an LBD person looking good at one moment, that is the assumption about all moments not-seen. And because we can, we always put all of our effort into putting our best mental foot forward for all to see...and if our attitude about all this going-crazy-then-dying shit is good enough, we get known as good soldiers and then that level of "stiff upper lip" becomes the expected norm. If you could only see us on the inside while we are doing that.....

There are times I am so tired of the journey, the constant battle to do things others find effortless, and its not enough to not fear or dread death, you are expected to be a fount of good cheer and an inspiration to others. But the deity as my witness, some days all I have is the old man version to work with......
Edit: This is another fun aspect of LBD, never being able to complete anything more than the simplest of thoughts in a single go. What this article needed to "bring it home" was always intended to be this:

To use an exaggerated example, just because performers in Cirque Du Soleil can perform those amazing feats for hours in front of you for a show, would you not feel stupid assuming they or any human was capable of doing that every waking minute? And without mishap?

If you need something simpler, take a high school track star; not average, I mean star. They can run the minute in some fantastic time but is it realistic to think they can run like that every step of the day? Not a chance in hell.

And if not them, why are we? Thats what it feels like when at any given moment we are not only to be "up", we are expected to be the very best that we *ever* are, with *all* the effort we have left to give. Its us running that mile.

Now this may be too tricky for some but hang with me here, it will help everyone...so if you give athletes and other high-focus performers time to rest and recuperate and only make them get up and to the dog-and-pony show for limited amounts of time. how hard it is to conceive that might work for us too? We can do things, we can on rare occasion perform outside of our mental weight class even but its ours to choose when and if we have the ability to do it and if we don't, don't give us any more shit about not being up to stuff than you would that high school runner for not running every step of his or her day at top speed.

Its as simple as that kids. We do what we can every day; what we can NOT do is swing for the fence on every at-bat.

The day folks learn this is the day ....there is a term used in medical circles called "quality of life" or the state a patient is forced to live in (pain, chance of recovery, etc). What no one talks about is "Quality Rest-Of-Life". If folks understood this fundamental thing, it would improve the quality of the rest of all of our lives......

Jeff


Comments

Popular posts from this blog

Dementia Cannabis Update

Update: 22 July
Project started, grow page and journal is here:

Operation: Constant Clarity


This is one of the most difficult posts I have had to write, mostly because I "had" to. Allow me to explain and I promise by the end you will not only understand the "difficulty" and the "had to" bit but also I hope you come away with a few new assumptions or conclusions, you pick and if all that passes you by, perhaps you will find illumination as this is some serious "dementia from the inside out" kinda shit.

The 18:1 Theory
Before I tell you what happened, please recall I have expressed a theory or hypothesis on the effects of a cannabis extract/concentrate that tests out to have a CBD:THC ratio of 18-1 on the demented mind. By demented I mean any brain with not just dementia but anything that alters so-called normal operation. I don't mean anything like it fixes everything, rather there are things that are fixed by this like PTSD and ADD that you …

Be Who You Actually Are

Many moons ago I was starting my day like many of us enjoying the gifts of dementia by spending most of it screwing up each and every thing I attempted to do, large or small and usually in ways both spectacular as well as costly.  On the verge of tears I spent about an hour medicating with my very best botanicals when I had the BFO (Blinding Flash of the Obvious, engineer-speak): I am still attempting to be something that I am not only NOT but barring acts of a supreme deity, never will be again. Its just that damned simple.

* What makes a persons personality unique is the precise set of influences, patterns of thinking, lifetime experiences or memories amongst many other things. These are all stored and/or controlled by the brain.

* The root cause of dementia is damage to select portions of the brain.

* For better or worse, the simple truth is that this will result in a different person. Not better or lesser, simply different, in the same way that any two coworkers might be very dif…

Holy Crap Batman! A hero with dementia!

Braven 2018
Hey kids, I ran across something you just HAVE to watch. I mean you as in readers of these words. Looking for entertainment last night I was scrounging some of the dodgier parts of the Internet for something not involving a cape or "found footage" to watch. Long story short I ran across something from this year (2018) called Braven, starring Jason Mamoa (Aquaman/Ronin on Stargate Atlantis) and Stephen Lang (the major hard-ass in Avatar).  Plot reads like a B-roll actioner, drug dealers drop in on county folk and try to take them on their own turf. I agree, major tired plotline BUT......
Here is the kicker: The country folks (Mamoa/Lang) are in the cabin in the woods kinda thing because Lang (plays Mamoas dad) has alzheimers (he blames it on some Vietnam injury but...) and got into a fight at a local bar, thinking some girl was his dead wife out on the town. 
Of course Jason beats everyones ass in proper manner as it should be but thats why these two are in the c…