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Showing posts from January, 2019

For the first time I am frightened...

Greetings kids, Jeff here.

I have written in the past about the fact that I have a terminal disease and yet I do not fear death. Its not that I am brave or special or anything like that. I can't fully explain why, but within a week of learning I had a terminal disease and had a more or less drop dead date, I found I didn't fear that date or the dying part. To me its just a date, just a thing. My wife is emotionally more impacted by this than I am.

At first I just figured I was weird, I have been my whole life and am at peace with the fact. But then the day came when I met Randy for the first time (well, online so ...you know). Randy who is the other contributor here also has Lewy Body Dementia and is roughly at my stage of progression. In some ways he is ahead (walking) and in some I am (confusion) but we are close enough where it made sharing notes an obvious first step, and I was surprised at how many things he described that I thought I was the only one. One of those ways …

Back To Basics: just remember FAWL and you got it all....

I wrote another article about all you need to grow cannabis is food, water, air and light. At the end of the day, you can add a hundred other things to it but if you remove even a single one of the above your cannabis will fail.

So recently when we had our floors done I had left some Black Diesel cuttings rooting in a mini-DWC unit I have and when I got be, roots were everywhere and I needed to get these cuttings into a better environment but all my grow stuff is jammed in the back of this pod thing we used to store our stuff in while the work was being done.

So I needed to have these into a better home like that day, yet it will be a week or more before I get all the stuff out, let alone set up and working. So, I went back to basics: what was the bare minimum I needed to keep these plants safe and happy (happily vegging to be precise)? My basics of Food, Air, Water and Light. Thus I transplanted the cuttings themselves into my To Go Cup things with hydroton I found out back and rins…

A common frame of reference for the insane.

The RVI; a common frame of reference for the insane.

When you are losing your mind due to brain disease, when you have to tell your neuro "hows it going?" often you can stumble so much that he or she never gets a clear picture of your mental state. Worse, as Murphy would have it, the worse you are, the harder it is to explain. However bridging this conceptual gap for someone with dementia is incredibly hard. Also, when expressing state to another person with dementia, since each dementia is unique, its hard to know when you say to them "I feel like X", that you are sure they know what "X" means. Just had to find a common ground and I realized that on a normal day, getting though the day with dementia is medium-to-difficult to get through. It matters little what the actual events are of the day, the days are either tougher to get through or they are not. After tossing this subject around with another lunatic, the concept of "the viscosity of reality&…

Thank God for Donald Trump

It seems with every new action, Donald Trump finds a new way to make this country worse, not just internally but upon the worlds stage as well. Many sane people walk around shaking their collective heads over what a horrid president Donald Trump is.

However, after viewing the historic levels of indictments, childish tantrums, self-inflicted wounds and general out and out buffoonery, I state with all confidence:

Thank God for Donald Trump. In many ways it was the luckiest day for this country when Donald Trump chose to run for and eventually win the presidency. Before the pitchforks come out, let me explain. I had a nightmare.

Someone just like Donald J. Trump had won the presidency here too. In my nightmare though, this Donald wasn't a buffoon, wearing his idiocy on his sleeve for all to see. He projected a vague sense of competence. This Donald was different in other ways as well. This one had no problem reading a book or a shelf of books to become conversant on a subject rather…

Notes from the fog....

What follows is an attempt to send notes back from the fog-state to myself. Change messes and aggravates my dementia and big change does it big-time. In this case due to work on the house I have been holed up in an hotel a few miles from home. I will keep a sort of mental log of my time here; it might be instructive, I can't figure it out.

Notes from the fog

* Work being done on house. As the house was prepared for work, the constant change started to trigger a more frequent fog.

* Since in hotel, fog is pretty complete.

* Any real ability to make decisions have long gone.

* I find Law and Order: SVU unsurprisingly depressing when seen in a semi-constant marathon.

* Commercials are intolerable. I don't now how you all deal with this and makes an interesting (to my state of mind) point: The idea that people with dementia like and prefer to watch familiar re-runs, that is still suboptimal, because watching stories I know but only sorta remember and keep losing the plot thread o…

Demented Perspectives: Reality is getting thicker....

I swear sometimes Randy and I must have been separated at birth....ok so it was a helluva birth and took 3000 miles and over a year to complete but here we are. We both have LBD, our progressions are close in some ways and far in others. I am in a bit of a fog so cannot make this really clear but if I suddenly started spouting flames out of my ass and called Randy to tell him, it would surprise me in the least if he finished my sentence.

But what really intrigues me is this:

Dementia is brain-damage, an altering of the senses and cognitive abilities and because its random, there is a lot of variability from patient to patient. That altered reality is usually not only unique to the individual, how that person interprets it and expresses it is unique to them and their individual background; life experience in other words.

Also, because each perspective on dementia is unique, I figure its often not worth mentioning unless I know someone else has that too; then the misery loves company t…

An Open Letter to Ted Cruz...

Dear Ted;

You are under the curious impression nobody outside of Washington DC cares if the President colluded with Russia as well as the equally curious conviction that a wall is going to change anything for America.

Simple logic and small words for a very small mind.

First, I am a disabled veteran living in Las Vegas, NV. Never even got close to DC. Yet based on the actions I have seen Trump take, I have a hard time believing anything else. His actions speak loud than his words, and his words of hate speak pretty freaking loud.  I am of no particular political persuasion other than the Can't Stand Bullshit party, if such a thing exists. You are insane if you think only politicians care about this. Bet on this fallacy too hard and risk losing your job.

In other words, swing and a miss!

Second, the wall is bullshit from the start. I lived for over three years inside a city with a REAL wall, built by someone way better then Trump. The wall around Berlin is about as seri…

The Worst Part of Dementia

This is Jeff venting about the one part of dementia or at least *my* dementia that is the single-most cause of tears, pain, anger, words Not Safe For Workplace and broken items from dishes to furniture.

Its not that dementia makes you screw up; it makes you screw up at the worst possible time, the time when its guaranteed to hurt the worst. This is not just a suspicion or guess; listen to the logic and you will get it.

One key place that got hit by the protein deposits is my frontal cortex or lobe (not sure of correct nomenclature). This is what controls what is called "executive function" or the ability to manage more than one task at a time. I have spoke on this before but this is the key to the whole problem.

Normally to get around in my day, do things and not fuck them all up, I must keep my mind clear from all but what is the main task. I go about my day walking carefully, not tripping over anything or breaking anything through sheer force of focus or thought. Only way…

The Condition my condition is in....

Jeff here. While this blog may have had alot of rants of late, blame it on the current political situation combined with a dementia patients natural disgust with unwanted chaos. It is cathartic getting those rants out.

All of that said, the core use of this blog is for Randy and I to share as much of our trips through the looking glass thanks to LBD as we are able. When we were both diagnosed (before we met) we lamented on the fact that there was so little information out there on LBD from the patients POV. It would be nice to know what to expect. In a way with so little info out there the situation is scary enough. Less info means more guess-work and imaginations at work. So we post what we can, the odd things that come along that only another patient would know.

And so it is that today I am going to try describing my current status.

* As of my most recent trip to the Lou Ruvo Brain Center, I am on a patch that doesn't seem to do anything.

* My sense of time of late is all but g…