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Project: WikiJeff

Hi gang, Jeff Cobb here. As my disease progresses, aside from the usual fun stuff with walking and memory, I find that those windows of time where I can more or less focus only a few steps below what I used to, these windows are coming less and less frequently and at pretty random times. I am finding that times that I can focus enough to even write in this blog only come once in what feels like a while. Its not that I don't want to write in that state, I simply cannot figure out how to operate the pretty brain-dead WordPress dashboard. Where before my idiot-cycles or low-phases  consumed maybe 10-20% of my waking day, now its more like 50-70% of the time. In this state I can barely operate the apps I need, if I can even turn the thing on and log in properly at all. Memory loss sucks because this is my one primary remaining contact with the outside world and even if memory loss prevents me from operating my box correctly enough to get done what I want, its never strong enough to w…

My reality is starting to feel like an alien planet..

My reality is drifting from that version of reality that is shared by everyone else on the planet. It isn't that it is alien and strange to me; rather it is how strange it would seem to you, occupants of the rest of the human race. I know this is true because sometimes my caregiver, who is a mental giant next to me right now, describes something we both can see but her version looks nothing like my own and since I know I am the insane one, I am forced to accept hers as "real" and my own a product of my own diseased mind.

Here is an example:

Traditionally I have been the one to take care of everything to do with cannabis in this house, from selecting the seeds and strains to grow, to bringing the plants to maturity, post-processing of said plants and finally processing them into medicine through extraction. I used to be reasonably good at it and because I am still responsible for it, and that I do get things to the finish line most of the time, it is her opinion that I h…

My sphere of comprehension

Greetings all, this is Jeff with an update. All along this forum has been through the efforts of an ex-dentist and an ex-engineer, both with advancing dementia. We keep up with what we can but at the end of the day, we are lucky to get something out the door. Hell some days we are lucky to even find the door.

This should help explain the hap-hazard organization here. Here is the deal: we will keep doing this as long as we are able and capable. Once it is too hard or too many mistakes are leaking out, we will exit gracefully. One thing I hope to do before too long is hire someone to organize the pages and information, so all the medical stuff is in one place, the humor or ranting stuff is in another, etc. Plus, I know between us we have quite a bit of writing on the subject of LBD; these stories will get posted as pages off of the LBD Stories page. I will write when and if I can.

I have often said that the 5-minute neuro-psych test is a waste of time and if you are bad enough to fail …

Understanding Conversations

I’ve come to a realization of late concerning conversations that I’m involved in. I’ve known for some time that I’m becoming increasingly unable to follow and understand any but the simplest of conversations but I had not analyzed the path those conversations most often take. It was not until I was in the middle of my latest round of neuropsych testing that the actual process of the conversation hit me. It goes something like this.

The person I’m speaking with  starts their sentence and I’ll do my very best to follow each and every word. But as soon I realize that I am watching each word be pushed off the edge of a cliff as each new word is spoken. It is much like the old  Price is Right game where there are a bunch of numbers in a line and a player has to push the numbers until the correct price shows up and the excess  numbers fall off the edge as they are pushed.  In my mind,  I see the words already spoken falling off the edge of the cliff as the excess numbers do when they are p…

From the perspective of an American Veteran, Donald Trump brings shame to us all

I wanted to wish my fellow veterans a happy Veterans Day but I simply cannot. What we fought and died for is being sullied by Cadet Bonespurs AKA Donald Trump every damned day.

When you are a soldier and stationed to a country and culture not your own, you can spend your time whining about it "not being like home" or you can learn to adapt to and embrace other cultures. Seeking out qualities of non-monetary value in others is the trait and skill of the diplomat, something Trump the thug has no grasp of at all. Since Donald Trump has never risked anything in his life, he doesn't grasp the job of the soldier at all. For him, we seem to be a club he can swing to get his way.

The job of the soldier is the job of the armed forces which is to kill, pure and simple. No I don't mean we are or were mindless killing machines; rather every soldier is trained for two skills; their "occupational specialty" which in my case was prehistoric electronic stuff but also ever…

Election Day Special Report

Well, for the first time in 30 years I voted. As evidenced by my voting record, this isn't something I like to do; in fact when folks like me have to take a hand in things, its because the last people we elected simply are not doing their job and so we need new people in those positions.

For a long time our countries political engine just ran and like very reliable software, was greatly ignored, so long as it worked. Well things are clearly not working in this country so its time to change things. Donald Trump and all he represents is the true source of pain...think about it: the only thing positive he and the Republicans have to offer on this election day is a tax cut and booming economy. He/They have zero idea how they will pay for it all and yes it costs money. They think they can take it back from "entitlements" and they had the chance to do it for two years now because no one had the power to fight back. An even with the wind at their collective backs, they could n…

Objects in mirror are stranger than they appear...

I don't know if this post is one long caveat or what but I feel its important to lay out some ground rules. Anyone is free to tell me if and where I am out of line. I post alot here but this isn't new behavior for me. Most of my gigs have involved lots of writing of technical stuff drier than a popcorn fart. I ran my own website in one form or another since the infancy of the www. Being an alpha-geek meant I even ran my website from my own hardware, because the hosting company and ISP offerings just weren't fast enough. Of course the downside of that is now that my writings have been relegated to the dustbins of digital history, they have also been relegated to the actual dustbins of Kalamazoo, Lynchburg, Ventura, Millbrae and Henderson.
In other words, gone. So folks read what I write here and sometimes it seems to help someone...this makes me happy but also scares the poo out of me. Aside from the obvious fact that each dementia is unique, I always feel I…

A taste of aphasia for normal people...

Man that last post was tough and way deep/down for me. Thats not where I normally live mentally so to lighten things up, here is something for caregivers. Alot of what I write is an attempt to try to illustrate to the reader what different aspects of dementia feels like and if possible I try to relate it to something in everyday life.
Well I have the perfect way for normal people to experience the fun and sheer joy that is expressive aphasia. I don't care what kind you have, this example works, it just depends on your age.
If you are under the age of about 50, try singing the words to ZZ Tops seminal masterpiece La Grange, seen in about every action or comedy movie for two decades.
If you are under 60, try doing the same thing with La Bamba.
Or Mannfred Manns Blinded By The Light. No one knows WTF they are going on about there.
You know what i mean, 99% of the people don't have clue one to the lyrics to these extremely popular songs yet try to sing along anyways…

And so the comedian asks: how many nuts can you fit in a boat?

Perhaps like Randys' last missive, a warning or caveat may be in order. This may make some uncomfortable or even trigger fear; I would only ask that you remember this is a fearful subject for most folks but not so much for the ones that you might think. If the reader walks away from this with illumination, this has been a good day.
In the past I have used the analogy of sitting in a boat tied to a shore to describe progressive dementia. You are in the boat and the rest of your family, friends, everyone and everything you knew is on the shore, living their lives. At this point you are still a part of things, more or less. Every day you become a little less a part of that life and more a spectator of it. As the dementia progresses, the boat drifts a little further from the shore, the faces and voices become a little less distinct. Events have less and less impact on your daily life.
Occasionally we will venture to shore when we can but almost always we retreat to the …

Riding the Mobius Strip of reality...

I had the strangest realization today, and given I have dementia and my own cannabis crop, thats saying a lot. We patients spend our time worrying about departing from reality on a permanent basis but in my case it seems I am taking some strange detours.
The first one was the idea that came up today. I am and have been a programmer for a long time and I have written alot of code over three decades. It is really no different than a chef cooking a lot of different meals over the years. In my case though, I have used my skills over the years to bend to real world to what I wanted it to be. The picture above gives a simple example:
I have been into comics since I was a kid but when I snagged the Marvel XMen DVD release with every issue from issue #1 plus all specials, etc I bought a copy. To my chagrin it was in PDF format (OK for reading docs, horrid for reading graphical novels of any kind) PLUS Marvel in their wisdom decided to plaster their watermark all over everythin…

Pardon me whilst I regress...

Before I became occasionally demented myself I had seen and heard so much of how AD patients often regressed to a very child-like set of behaviors....I don't know what i thought caused it or why it was like that, I just wrote that off to another bit of dementia that (specifically my grandmother) freaked me out.
Now that I have it, I am understanding much more but definitely not enough. It is real though. I don't know that it makes a difference but where before I had considered the child-like actions all part of a single cause, now I am seeing how they are different things and in maybe half the cases, my behavior might seem childish when in fact I am simply confused and not really understanding how to react to things happening around me. When things are bad my speech becomes quite simplified, often limited to one or two syllable words. "Adult" stuff doesn't interest me because I can't figure out whats going on...child like stuff (cartoons, etc)…

A strange kind of aphasia

Something odd I noticed that defies classification. Most expressive aphasia seems to fit into nice neat categories, all stemming from a systemic problem: words that come out are not the words that are intended to come out. Now if you have a garden-variety type such as what you would see portrayed on televised medical dramas, you will display an almost Dr. Seuss-level defect: the wrong word always comes out as a rhyme of the intended word, or its the polar opposite of what was meant, and so on. One key feature that all of the "Dr Suess" varieties share in common is that they are all immediately recognizable as a mistake, as gibberish.
Now I have other bits of the aphasia that are obvious or close enough to it. However one thing I noticed and mentioned to my wife of 20+ years tonight is that my cursing has suffered greatly since this began.
In total transparency, I was raised in a parochial school in Southern Michigan in the 1960's for the first seven year…

Sometimes objects in the mirror are actually dumber than they appear...

If there was a single gift I could give to Donald Trump, it would be that when speaking of things he does not know, STFU. Seriously dude, you embarrass yourself, you embarrass this country but mainly just just look like an idiot when you try to talk about technical things. If its that Brad Pascale dude who is your technical genius filling your head with such bullshit, you should fire him because he makes you look stupid, and with your normal song and dance act, thats saying something.

Two key things you don't know shit about, one is tech and the other is the people making it. The tech has evolved so far beyond your understanding that you sound like a 5 year old child when you scream that Google and other search engines are biased against you and conservatives. It is not so much that the folks who work at Google or other tech might be biased against you; after working with tech workers for a few more decades than you have or ever will, I am pretty sure most of them think you are a…

Considering The Future

After receiving the the news of the rapid advancement of my Lewy Body Disease I’ve been doing some serious thinking and have had some difficult discussions with my wife. She has always said she intends to keep me at home until the end, doing as much of the care giving herself as possible. While I dearly love and respect her for this, experience and the stark reality of our recent news bring home the fact that this is not feasible as a long term goal. Eventually I will require not only memory care but more and more physical care that often requires brute force, and I’m not a small man by any means. She suffers from advancing rheumatoid arthritis and can not afford the physical stress such activity would place on her body, not to mention the mental stress.

She counters that our sons will help her and she will be able to hire home health aides to give her relief. My problem with that is I know my wife. She has good intentions. She would go into it with all   Intents of accepting that he…

Doing something actually helpful for your caregiver!

This is strictly aimed at patients with caregivers who are also our wives, husbands, etc. Not that it needs repeating but many dementia patients such as Randy and myself walk around with an extra-special sized bucket of guilt at how much we have had to put on the narrow shoulders of our SO-now-caregiver...we think about it all time and not only can we not see a way to stop it, we can only see it getting worse with time.

Completely by accident this week but a few things came together to point out something important: you (the patient) simply cannot do things as you did before, get over it, thats just how it is with this. However, its not that you absolutely can not do them, rather its more like you cannot do them with any regularity without screwing them up. At the same time, for at least a huge cross-section of these things, you can probably get through doing them once in a great while if thats all you have to work on or deal with.

Thus it is that the time to really help your caregiv…

When will mainstream media fact-check cannabis stories the way they do political ones?

The world is a bit of a strange place of late. Cannabis legalization here and there has lead to two worlds, one where it is legal (and known) and one where it is neither legal nor understood at all.

If you watch the cannabis stories coming out in the news, there are clearly two kinds you will find: stories that are true and at least remotely accurate about the plant, uses (and dangers) and so on, and stories that try to paint some kind of an image of pot in the minds of the not-yet-legal reading public. This image is usually grim and provably wrong but what caught my attention this week is this bit of drivel parroted by Mother Jones claiming all pot is exactly the same:

https://motherboard.vice.com/en_us/article/gye3nb/what-makes-weed-strains-different-cannabis-thc-cbd

This core of this story is a report put out here but the conclusions they bring to the reader are beyond astoundingly brain-dead. Even if you don't know cannabis, anyone involved with any kind of research will immed…