Living With Lewy Body Dementia

This is a column that I will add to over time, one I have long-thought should be a website. Anyone who has been dicked over my an Amazon vendor knows the pain of getting no help from Amazon, they also know they if they leave an ACCURATE product review that Amazon will refuse to post it. They only accept reviews where the vendor is beyond reproach, the delivery was prompt and on-time and the product was exactly as ordered. If you have any of those previous things happen with your order Amazon will not let you report it. Amazon isn't as bad as DHGate is yet but they are really working on it with gusto to catch up.
Until that happens, this column is for Amazon reviews that Amazon won't allow you to make...
**************************************************************************** After reading about the PocketGo hand-held gaming system (and the fact that it played PS1 games AND I have a ton of them) I decided to order one through Amazon on Feb 10 2020. Feb 11 they approve the …

Many things about Lewy Body Dementia is really hard to explain to someone who doesn't have it and even harder if you have expressive aphasia screwing with your ability to word things....

Then the other day I caught some video of someone at the Olympics I think doing the butterfly stroke and in an instant I knew I had my analogy, a simple way to understand our day.....a few edits later and I have the above.

Enjoy.

The irony is not long ago it was totally the opposite, most of my day was spent with my head above water and only periodically being pushed into the fog or dementia.

A final thought I would like to leave the reader with is this: if this sounds horrible or horrifying to you, remember you have a brain that can understand it AND you have someone explaining it to you. Imagine what its like for the pre-diagnosis LBD patient still in the dark but going through this every day....

Memories, the stuff from which we shape our lives, personalities, self-assessments of wisdom and that which warms us in later years...when you have dementia, these can be your greatest joy and source of emotional warmth or be the constant terrifying reminder of horrors long-past.

As my dementia worsens and I continue to observe my decline with what is hopefully at least an engineers’ objective eye, I understand things in a whole new way. It is not as if I have any secret font of knowledge available to me that is not open to anyone else willing to look or listen, it's that I have been forced to re-examine life-long assumptions about the many aspects of dementia with which I find myself contending on a daily basis.

Or to put it plainly, to throw out the bullshit about dementia I thought I “knew” all of my life.

FAIR NOTICE:

Blog construction in progress. Some things need swapping about and I have now had enough complaints about the site being hard to read on cell phones that I will try to do something.

Bear with me, doing my best in spite of the dementia....hopefully this will get sorted shortly.

Jeff

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…

This happened to me today. I woke up, sat on my sofa whilst sipping my morning coffee...and as I looked about the room I realized I recognized hardly anything. Our home has (by accident or design) become a kind of monument for the things we have done in our lives together, kinda like Batmans trophies in the Batcave. Each evokes a specific memory of a time and or emotion.

Today there was none of that; stuff seemed vaguely familiar but in same way that when you see something fun at the store and think to yourself this would be cool to have in my home....so you know already its cool and you will like it in your heart but you and it have no history together (yet) so its a sterile kind of love....in the same way a picture of food will not nourish a starving person, our lifetime collection of stuff looked cool, looked like stuff I would want and collect...but it didn't look like it was "mine" yet. Really weird.

I wish I could say that it all passed in a moment but that would …