What is it like to have Lewy Body Dementia?

Bad news first: when you get diagnosed for Lewy Body Dementia is way AFTER you "get it". Therefore there is a definite before and after thing, and what makes before and after important is the thing about LBD that allows a demented person to write something like this.

As I have written elsewhere, the cognitive side of LBD is like having a dial wired to your brains cognitive abilities....and periodically throughout the day someone comes by and gives the dial a twist. What that means is I can cognitively go from Jeff the software engineer to Jeff the idiot almost in mid-sentence sometimes and stay there for hours.

Thus the stuff you see written here is being written in an up cycle. I do have expressive aphasia which means translating whats in my head to the written page is a challenge on the best of days. I also have memory thats faulty AF and for all I know, I might be mis-remembering a little, a lot or maybe everything.

Before you are diagnosed, usually long before even realizing you even have a problem, you start to notice things breaking down. Memory isn't working as flawlessly as normal, problems that seemed easy a year ago now seem insanely difficult. The weird thing, the thing that keeps you from getting help sooner rather than later is that during your up cycles, you feel pretty damned normal. Hours later you can slide into the down-cycle and suddenly the fog rolls in. Everything is confusing, mystifying. Impossible. Overwhelming.

And then your back. You can't even articulate what is happening to you. 

The problem is that on the outside and to the rest of the world, you look as normal as you ever did. Since you *sound* normal during an up cycle and you look normal no matter what cycle you are in, you are nothing but normal. Except when you least expect it, the brain goes south again.

Even that, as bad as it sounds, doesn't really bring it home for the reader. You see, when it starts, it starts slow and you have no idea that you are slipping in and out of anything. Its more like you feel normal (and more to the point, fully functional) and you don't know something is wrong until you instinctively try to do something mentally, like remember some important data, how to perform a task, literally anything...and its just not there. For a simple example of this, I might have been asked what I had for breakfast and I would immediately begin to reply something like "Oh, I had..." and then it would just not be there, much to my surprise. Or I could be working on a problem and suddenly realize I no longer knew how to solve it, even though I had been solving the same kinds of problems since 1986. Another thing you just can't blurt out "Oh guess what? I can't do such-and-such anymore!"...and even if you did, someone will ask the inevitable "Why is that? You seem fine to me..." and you will not be able to tell them because you are barely even recognizing it yourself.

Add to that, being the bread-winner of the household, my wife 100% disabled. And I was literally swimming with the sharks at the time, working with folks 10 years younger and 2 times smarter or better educated than myself. In a city where rent is three grand a month...no I just could not admit my thinker was breaking down, even if I really understood what was happening to me...which I didn't. This only reinforced the denial, made it easier and in the beginning, it was easier bullshit to pull off because most of the time, I was normal.

In time however, you can admit something is wrong, even if you can't put a name to it. Doctors give you the once-over, the idiot-level neuro-psych test that as everyone saw at the Whitehouse on national television, a clearly delusional and paranoid person with dementia can pass one of those. Worthless does not describe that test. So you go on thinking there is nothing wrong with you so maybe you do what I did: worked twice as hard...and getting only marginal results. Key point here: adding more stress to an already-fumbling mind is not The Golden Path to Sanity.

At first its lots of little isolated things that don't quite work the same, nothing you can trace back to the usual suspects like sleep deprivation, unrelated illness, stress, overwork, etc. If the changes and defects were purely functional in nature, it might be a different story. However whenever you have something that randomly damages the brain, you have a non-zero chance of having one or more of your perceptions altered as well. I don't mean anything fancy like visual or aural hallucinations; those can come later. I just mean that every single thing in your body is controlled or interpreted by the brain, and so it is not surprising that things like sight, hearing, taste, smell and so on can be affected as well

You may hear everything but not really process it all, or not see a stool in front of your face and trip. I smell things that are not there all the time. Burning rubber/electronics, dog-shit...burning dog-shit...garbage...you name it. Most days food is just food but others everything I eat tastes the same, and that something is usually something nasty.

Another way this kind of damage can change your perception of the world around you is that it can literally cripple any sense of time you might have had. Time becomes at first, very flexible and with time, an hour no longer feels like an hour, a day is no longer a day and so on. Sometimes it felt longer, sometimes shorter but never felt "right". There is a sense of feeling detached from the normal flow of time.

Of course this stuff is all really easy to see with 20/20 hind-sight. When its you and you know nothing, you world, your very reality seems to be flaking away around the edges. Making things worse, no one but you can see this stuff, so it takes on a very gas-lighting type of experience, only you are the one being gaslighted (gas lit?).

Having dementia is very much like having your very own, personalized gas-light experience...I totally get what Robin Williams was going through.

The day you finally get a diagnosis of dementia can be both frustrating and relieving at the same moment. Frustrating because  anytime you get a diagnosis of dementia due to (fill in the blank) it frankly feels like a gut-punch. With so much misinformation out there on the subject of dementia, its easy to fear the worst-case scenarios. However, at least in my case it was a relief; I could at last put a name to my enemy. There is a small comfort in knowing there is a real reason for the things happening to you and maybe even more important, reality isn't really screwing up.

This ends part one...the "before"....


  1. Hey Jeff, I’ve got you another example of the warped sense of time and reality. It concerns the post I just put up. I actually finished it several hours ago, and to my mind I posted it to the site at that time. I would have bet money on it. When I came back to the site a few minutes ago to check on something, lo and behold, not only had I not posted it, I hadn’t even placed the gif I wanted to go with it. No big deal really. It took me less than a minute to complete but the point is I would have almost bet my life I had already done so. I was that convinced of my remembrance of those events. A very faulty remembrance indeed.


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