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Showing posts from August, 2019

Todays adventure or idiocy: exploring the fog

Slight update: since posting this I have had folks write to express sympathy for what I was going through and I would like to have any reader to still thinks this to read about The Undiscovered Country before coming to any conclusions.
End update.

This feels weird. Allow me to explain. I woke this morning in unexpected and ungodly pain. Well...more like...take a 6-hour long moon-shine induced hangover and compress that pain into about two hours and you will have my morning and what started this. I gotta warn though I have no idea what I am saying 2 seconds before I say or in this case, write it.
I don't know why it happened. I drank nothing, overdid nothing, last night was like any other night but as I said, I awoke feeling beyond hung-over and trust me I know hangovers. I wasn't always the nice teetotaler you see before you today. Regardless of what caused it, promethazine for the stomach, relpax for the head and two hours later I am out of it, in more ways than one. The hangov…

So you just got your PET scan: Do you have dementia?

So you just got your PET scan and are concerned if you have dementia. I know that can be a scary time so I made this handy chart to help you peer over the doctors' shoulder and determine for yourself what your future might be...

There has been a lot of talk about is it LBD or is it Alzheimers or Parkinsons or do I have anything at all? Well not knowing can be a hell unto itself so I made this handy chart to take with you when you go to the neurologist to check your PET scan for protein deposits...this will help you know at a glance if you have Lewy Body Dementia or one of the others or nothing at all.
With a straight face I state this is as scientific as some of the techniques I have had neurologists try on me....

Be sure to let me know if this helps, I have a whole line of borderline-crazy medical diagnostics all the way from the lunatic fringe.....maybe the fringe of the lunatic fringe...I don't know....see what you think...and remember, just follow the magic footprints....


I am Dementia

This is a curious thing. The other night I snapped awake from a drowsy state, hammered out the above and then passed back out. I have no idea where the words came from. Some folks, myself included, have found them to be a little disturbing.

Welcome to my world.

Reminded of my mother again

I don't know why but I seem to be following my mother's path through dementia much more closely than my father's. That fact was again brought home to me today as I was emptying the dishwasher and placing the dishes where they belonged.

As I trudged through this boring chore I came to realize just how much noise I was making. My mother, as her dementia worsened, came to hate my putting the dishes away. She would swear I was breaking each and every piece. She would ask why I didn't just throw them in the floor and stomp on them. She thought it might be much more efficient and quieter.

I also realized something else, this noise was driving me batty as well. The more dishes I put away, the more agitated I became. Thankfully, I placed the last dish in it's proper place just as my last nerve snapped. I think had I many more dishes to put away I would have thrown them in the floor and stomped on them. I don't know if it would have been more efficient but it definitely …

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 "…

Us VS Them: How Type-A dementia patients and their loved ones see their decline

Preamble: I hope you read this. Creating this stupid #$%^ graph about kicked my ass before I even got to writing. If for no other reason than respect for the agony of the demented, read on please...



This is something I think I knew for a long time had to be written.  This isn't to cast doubt on anyones perceptions, simply to point out a different POV on this subject of Dementia Patient Functionality.



When being judged as to how we are "doing", it is often the habit by both patient and caregiver/SO to fall back on assessing how well you do things compared to how you used to do them. (Editors Note: loaded-assed statement, that one). You would think this a rational scale to use in order to convey disease progression but as a patient I WAY gotta beg to differ. Now before going forward I state for the record I have been accused of having a "Type A" personality which I took to mean was fastidious about getting things done and done well. This is not to state I/we do …

Brothers From Another Mother

Jeff and I feel we are descending into a darkness from which we may not return. This has been going on for months now. I don't believe its a first for Jeff but it is for me. I've always just known in my gut that I would return to some form of normalcy no matter how deep the fog. But not this time. I fear I am the best I will ever be again, and that ain't good.
But yet, even having this feeling, I'm not bummed, I knew it was coming, I just hoped it wouldn't occur so soon. As a matter of fact, like most everything else in my current reality, this development just doesn't matter. The apathy is overwhelming, the feeling that I've permanently lost a few more mental marbles just can't get through. Yet, I did find myself upset about something else.
Jeff appears to be some months to a year ahead of me in the course of our dementia's. And this is what upset me. The thought that suddenly burst through the fog that there's a real possibility that Jeff may pr…

Tomorrow the sign in my window shall read:

Explainer: I am at the end of my mental rope. I know I will be better tomorrow after lots of sleep and even more mind-altering substances but right now, I feel like an old used shoe, missing its mate so useless and discarded in a corner. And its all my fault. I didn't see this coming; let this serve as a cautionary tale for others.

Here is how it happens. First the caregiver/SO has an urge to do "one last" this or that with several of your closest acquaintances, perhaps with food and all intents are for this to be a stress-free afternoon for you, one of remembrances, telling tales of old and so on. You know what I am talking about. The error has already happened but now it gets compounded because you and your caregiver work out who is coming by who you are most comfortable with; it only makes sense (as most master-decisions do just before the Eagle of Reality shits all over your plans) but heres the catch, the gotcha, the iceberg that takes down the ship: you evaluate a…

The Final Ride of Jeffs Grilled Hawaiian TriTip

I have been asked to document how I do or make certain things as the dementia gets worse. At first I thought I idea dumb but nowadays, it often feels like each time to do something like this, it could be my last. What was a breeze even a year ago now feels like juggling chainsaws..



One of the things I get the most asks for is my teriyaki tri tip. It starts with my Hawaiian Teriyaki sauce which I highly recommend for damned-near anything. Its falling-down simple to make, you can tweak the recipe a 100 different ways to make it "your own" and the deity as my witness, this makes anything, burgers, dogs, chicken, pork, you name it, it rocks with this.

Jeffs Hawaiian Teriyaki Sauce and Marinade Ingredients:
2 cups Brown Sugar
2 bottles Low Sodium Soy Sauce
2 tsp Crushed garlic
1 tsp grated or dried ginger
1 large can of crushed pineapple in juice
tbsp of white cooking wine, saki, etc

Note on the amounts:

The brown sugar and the soy work in tandem so when picking out how much of …

I am the product of immigrants

Just as the title says, I am the product of immigrants. The earliest direct ancestor I can reliably prove, is my 8th great grandparents who immigrated to the United States in the late 1500’s. The newest are my 6th great grandparents who immigrated in the 1630’s. So, my family has been here for awhile. But yet, I am still the product of immigrants. And so are you unless you’re of Native American descent.

That’s why this current, horrifying trend to return to the Jim Crow era is so disturbing. We should be better than this. We are better than this. So why don’t we show it?

Is it living the mores we were reared with. I contend it is not. Or at the very least it doesn’t have to be. I grew up in the Jim Crow south. It was an everyday occurrence to hear references to the “darkie”, the “little Jew”, the n%*#er. There were no whites only entrances or water fountains, etc... where I was reared but those things were easily within a comfortable car ride of a few hours. Whites and those of color…

It’s not easy being a houseplant

If you know someone with dementia, you may have wondered why they sometimes wander around the house. Why they seem so restless. Why they’re always getting into situations they have no business being involved in. Why can’t they just stay in one place and lessen the problems they seem to cause for themselves and their caregivers. Well, I’ll tell ya, at least from personal experience, for the caregiver and the patient, it’s not easy being a houseplant. Houseplant. That’s what Jeff and I call ourselves when we get deep enough into a fog that it’s actually not safe for those around us or us personally to be up and about without assistance. You would think that during times such as this it would be easy, even preferable, to stay seated, snug in a place of comfort and security. I know I had that thought on occasion. And you, as was I, would be wrong. For us at least, the ability to remain content in a calm, safe place is much like the girl in the movie, GONE.  I wouldn’t exactly call what I’m …

First release quality version of my Cool Movies for people with dementia...

As a dementia patient I know how impossible it is to remain focused on any movie long enough to enjoy it...in fact it seems I can only absorb visual entertainment in small, 10 minutes or less segments. So I figured why not take all my favorite parts of my favorite flicks and stitch them together into a single "movie" made for the demented. And it works.




The final version of this first effort is here. I figure thru fair use people will be OK with this.

Cool Movie Volume 1.1.1.1

Enjoy. Future volumes to follow.

Jeff





Navigating the Choppy Seas of Reality

Warning: probably value-free content ahead. Read at your own risk. Keep hands and arms inside the ride at all times. Not legal in the state of Arkansas and any state with the letter 'X' in its state song. Offer void where prohibited by law. So you don't forget call by midnight tonight! Please wait six to eight dog years for deliver.

Yeah OK this is a note from the "darkside" or downphase. Don't expect fancy prose; I can barely work this keyboard. I started and executed most of today on an up but wound up doing so much that by the time we both sat down for the day, my brain was circling the drain.

This drain represents a place i have been spending alot of time of late. I call it the choppy seas of reality not out of any attempt at artistry but rather a pretty damned accurate description of everyday it seems.

Think of it like this: if you have to traverse a bay under normal calm ocean conditions, the trip would be unremarkable at best. If you had to do it unde…

My New Best Friend: The Daily High Club Steamroller

Greetings kids! I would like to introduce my new best friend: The Daily High Club Tommy Chong steamroller! I had recently gifted my old best friend to another best friend (it gets complicated) and so I was in need of a steam roller-shaped new best friend. And he/she/it arrived today!

Whats cool about it? Well, its shape and general aerodynamic nature will make it an instant favorite of mind-engineers everywhere!

How is this cool for the disabled user? The DHC streamroller is great for a couple of very practical reasons for the disabled smoker:

1. It is a very well-built product made to take a lifetime of shaky hands.
2. The curves in the glass itself provide a very easy and secure surface to grip.
3. Gives a lot of medication in a single shot. This is important to the disabled user that can't sit toking all day long to get their meds in them. File this under "Gettin' her done!" category.
4. As mentioned else-where this is easy to clean for unsure hands and less-than…

Grow update, odds n ends

Hey greetings kids, just a small grow update. The 18:1 RSO op is in full swing, sprouts just got their first real sets of leaves. I mean to grow these seed to weed indoors to control every aspect of the grow process for best results. As such, I know once these reach their second sets of real leaves, they are ready to be transplanted into the medium they will use the rest of their lives, starting in my To Go Cup things. I have augmented that part of the process with a small aquarium pump supplying a constant stream of nurtients over the roots at the base of the plant, thus ensuring every part of the root ball gets an equal and generous amount of nutrients and water. I have seen myself where this simple addition can add tons of growth and vitality to almost any plant. 
The original version just used the same setup except the tubing was all free form and depending on the flexibility of said tubing the lines were pulling out of the plants and nothing just stayed put. So with this grow be…