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Showing posts from September, 2019

The Inevitable Result of Denial-Lite

This is a commentary on denial. Not classic head-in-the-sand denial where any illness is denied; rather what I think of as denial-lite. Denial-lite is where one has no doubt of your illness but treats it as if it were a cold or flu. IOW When viewed thru the lens of their sun-glasses, your symptoms are always about 10% of what they actually are. Oh its not that bad! Oh I forget/burn/break/lose/destroy things ALL THE TIME! I don't know if its straight out failure to believe or if its a really misguided attempt at normalizing the patients' behavior so somehow *they* won't think its so bad. Hell I don't know the answer; I am crazy after all.

What you have to appreciate is how brain-damaged you seem to us when we are seriously experiencing fog or motor issues and we hear one of the above. Like if you thought about it for more than a minute or got better advice than whats available on freaking Oprah, you would probably rather ram your head into a brick wall that say anythin…

Thoughts about my ending

How will I handle my death when the time comes? This is a question that occasionally slips into the dark recesses of my mind and makes me even more nutty than usual. It’s not that I have a feeling of impending doom, far from it. But, when you’ve been given an expiration date that’s almost certainly going to be sooner than later, things like that tend to bug you from time to time.

I have been present at the death of several people and each has had their own unique “style” in death. My father, for example, thought he could not go, that he was needed by the family and he fought with all that was in him up until the very end. He had been in the hospital for several days and had had several MI’s, each more devastating than the previous, and he was lingering in misery. For the most part, he was outwardly unaware of the world around him or the condition he was in, he was semi comatose most of the time. However, occasionally he would open his eyes and have the strangest look in them. A look t…

Easily download any internet-available video stream with VLC

Hey Kids, Crazy Jeff here with a fun little tip that might take some frustration from your day, if you ever need to "capture" or download a video from the Internet. What forced me into figuring this out is that for a long time, any browser had plug-ins and one plug-in was always for downloading flash video like on YouTube.

This is one of the ways I try to use the LBD to my advantage: when I am in a sufficiently up cycle I try to make sure to keep a number of challenges on-tap of varying complexity so I can push myself as best as I am able. I have to be careful because if I start something too complicated and run-down mentally before I complete, the old bull-headed Jeff still tries to plow thru to the end and generally screw everything up in the process. So its a juggling act but if handled, can make the most of your up cycles. It works for me.

Sadly with the passage of time and other things, browsers quit supporting plug-ins at first and specifically downloading these video…

I Will Never Be Able to Repay Her

My wife/caregiver, Karen, has had bronchitis for just over a week and is finally starting to improve. This is amazing on so many fronts considering the meds she takes for her RA leave her immunocompromised. Usually, getting over an infection such as this would take her the better part of a month, if not a hospital stay. At this point, the bronchitis has completed it's course. Now, she's primarily just weak and left with a hollow, sometimes spasmatic cough.

It was with this background that day before yesterday unfolded. Karen was finally able to spend the majority of the day upright and conversing. It was at this point she noticed my feet which were swollen so that I could barely tie my shoes, ankles were a thing of the past, I couldn't even feel my ankles if I pressed hard enough over them to leave a depression. Over the past week and a half to two weeks I had gained 25-30 lbs. and developed this swelling. It included my lower legs and hands. She had noticed this earlier in…

Executive Function Disorder: The Bane of My Existence.

Update: I originally wrote this a little ways back. All of it still applies but I needed to (re)post this so that what I post next will make sense, or at least as much sense as I am making these days. That might qualify me for talk-radio but writing things this complete is a tough row to hoe anymore. The follow-up event I am documenting now is something that is a particularly evil extension of this, one that my dear friend Randy (Poppy something on here) knows well and has asked me about in the past...a secondary reason for the repost is to spark discussion if possible on this as this is almost the single-most heinous impediment to my daily life right now.

Overview: This is a sort of analysis of specific symptoms presented in my Lewy Body Dementia. Part of the reason I post this is to have better minds than my own sanity-check it; the other part is as my own LBD developes, I am finding more and more that what I assumed to be true about things like dementia is almost criminally incorr…

My Final Refuge....

Not that many years ago, my playground, my domain, my "world" was quite literally, the world. Traveled far and wide, spoke more than one language, had plenty of exotic food and beer. Lots of beer.

Then the LBD starting kicking my tires and a year later, my world shrank until it was basically my "town" of Las Vegas...


Then the dementia took away my wheels and I was not only content with that, I grew to crave that smaller world, or perhaps smaller scope of the big world is more to the truth.

Then about 18 months ago, my world shrank even further. Where it was not long ago the whole town, now its the very immediate neighborhood....and mostly my house....


A few plateaus later and by this summer, my world consisted of little more than what I could see from where I sat.....



Everything I needed (or could conceive of needing) was right here: meds (my magic garden), movies and TV (my VOD system I built) and plenty of video games (used to work for Sony so have PSVita, 2, 3 …

From the other side of their eyes: That patient is the first to find out and the very last to know

Greetings; what follows is an except of a conversation I was having with a new caregiver of an LBD father is I remember correctly. She was remarking upon the fact that Randy and I re so open about the dementia and her father was very close-mouthed about it in the beginning when he could still talk and she wondered why....the friends handle was "Music55"

<snip>
Hey; I have no idea how old this is but wanted to reply to something you said about your dad. You wondered why when your dad was first getting the dementia he didn't talk about it. Music...the road from where you start (according to everybody, you are fine, work starts to get a little tougher than usual) to where he ends up (today) is a rough, tough, mine-filled path to take. At the moment your conscious mind starts to recognize something just might be wrong with your reality (as you see it), your subconscious already has a good clue something more fundamental is amiss. Now heres the thing: here you are, bre…

Something good for the head from Living with Lewy Bodies

With all the chaos in todays world, it really can take its toll on the demented over time. I also am aware of the fact that much of what gets written here can be grim and very serious....so I decided to make a little stress-from-chaos reliever for readers of this site.

I got the inspiration for this from watching a science video in the news today. Apparently there were some deep-sea scientists that found the strangest kind of jelly-fish like creature that started like a jellyfish but over the next 5 minutes transformed itself into dozens of shapes. It was almost hypnotic were it not for the scientists trying to do voice-over and they sucked...but the video is something to behold.

So I downloaded the original video from YouTube, ran a program I wrote a year or two ago that automatically scraps out the audio from a media file, in this case leaving only the video. Then I decided to overlay some music of my own choosing. Basically when you see this thing, one of the words out of your mou…

The Dementia Zone, Episode 8

The fog is bad for certain kinds of things but felt this needed to be addressed since it can mean the difference of living in hell or heaven during your final years....


Happy Labor Day from Living with Lewy Bodies!

Happy Labor Day folks from all of us here at Living with Lewy Bodies. Fun times afoot, had someone record making my teriyaki sauce for Beth, that will get posted when I feel better (this morning part kinda sucked the life out of me).

Update: I could sit and watch that GIF of slicing the tritip all damned day long. Drool.



Also catching tasty flicks including (finally) Bleach live action movie...in English! Every source has been Japanese-only so been waiting a while to get this.

Finally, to make the whole day work better for me, got the twisty-pipe double-perc out with my King of Idiots 3 gram bowl, which I filled to the top with the really great Gorilla Glue #4 we picked up..


So I am having fun, and pretending I am not demented too much; what was yours like?



The Dementia Zone, Episode 7

Normal folks have no clue how freaking hard our days are, and I don't mean the results of the dementia, rather the physical exhaustion from trying to get through a day in spite of it.


I state this not to elicit sympathy or pity but rather to explain that all of this adds up to a big physical symptom at the end of our "day": out and out, physical exhaustion, not unlike if we had been hauling bricks all day. Up hill. The best and maybe only way I can explain this goes like so:


When I was normal I got through my day fine because all of my thrusters or mental resources were firing efficiently. However now that the LBD has damaged parts of my brain, other parts must work twice as hard to make up for it in an effort to achieve the same things normals can reach with ease. Think of the last time you injured a leg enough that you could not use it to walk with for a few weeks. You will notice or recall that at the end of every day you were wasted from not only trying to get aroun…

Are My Eyes Decieving Me?...YES!!

Hey gals and girls, today I wanted to relay a strange new occurrence, one that’s a bit disconcerting while happening and it’s happened on two distinct occasions in the last 24 hours. What is this occurrence you ask, what has excited me so? Well, it went something like this.

While watching an adventure movie yesterday morning, there was a fight scene developing and it seemed as though I was shadowing the prime character, dodging each and every punch as he did when suddenly who should appear but my old friend hallucinations. Immediately, it was as if I was in the most complete 3-D experience ever invented along with all the other combatants when I looked up at the screen and saw the most realistic fist coming straight toward my nose. I was so sure this was real that I ducked to the right hard and came within an inch of falling out of my chair.

OK, so that was unsettling but, hey, at least it’s over and I think some downtime is in order. But our ever present party companion is not about …