More notes from the ragged edge...

My Grandma would have had it so much easier if we only understood...

 Hey Kids, Jeff here...if it seems like I am blogging less here, it is only because I am blogging in my mind these days. Why? Well for one thing I and any potential readers simply do not occupy the same reality-space and as such we have less in common. The result is more of what I have to say will not be understood by the casual reader with having a career in boxing or a 3-decade cannabis habit. 

I have noticed of late that I am becoming more and more disconnected from the rest of the world....cases in point:


One key thing we don't have on common is time. Mine simply runs counter to that which is enjoyed by the rest of the human race. Mostly it is speeding up. Some time ago I wrote about time and tried to project what it might be like about now....and I am not far off. I have no sense of time at all, even if I try really hard to perceive it. When I don't however, its like shit through a goose. As of this writing my smallest unit of measure for time that I can actually detect is the day. And thats barely there. Weeks are gone in the blink of an eye. Seasons are tricky in the desert since little changes other than the light and when you never go out in it....

The weird thing is I have enough brain left to know about how much or little time I have left, so you would think I would be panicking or depressed over seeing my already-short time left being shortened even more by my senses. Alas, I will say what I have said from the beginning, even though that date seems to be rocketing in my direction, I still see it as a number, a date. Not stressing it. My "bravery" could be as simple as I don't really understand my own death anymore or it could be the realization that things are likely to get alot stranger before they get quieter and perhaps that end will be seen as a reprieve. 


I am sure this will not make people happy but I am speaking truth written word is still intact but my spoken and ...listened-to word is about 90% failed. Allow me to explain:

Speech: My aphasia is getting worse and saying what I mean happens about 10-20 % of the time I speak in a day...the rest of the time its at best garbled and at worst incomprehensible. Its getting to the point that I find myself questioning the point of continued attempts at speech. For those who think me lazy, first off fuck you, second think about it, if my brain is misfiring badly enough to mangle speech, how in the hell am I supposed to "fix" your understanding of what I said? And when it happens more often than it does not, I am overwhelmed and often just give up trying to say or explain whatever I was. I get people trying to finish my sentence for me, also always wrong and can't be fixed, I get people zoning out and clearly not hearing what I am trying to say or ask me to say it louder and when the fuck has saying something louder corrected/changed its meaning?

The other half of this is the ability of my brain to process what is said to me. I think its due to advanced frontal cortex damage but now unless I am facing and focused on the speaker, I usually can't process what they are saying until they are like 5-6 words into a sentence...not sure if its processing speed or ability but right now maybe half of what I hear I actually process enough to understand. What worst for me though is when I have someone patiently explain something to me over and over and I can tell after a few attempts that I have no chance in hell of ever getting it and so give up.

When you lose all this and go days w/o meaningful conversation, you start to lose the point of things...

One thing ...I love this euphemism "neurotypical people"...IOW a normal person...anyhow one thing it seems they either never learn or learn and forget over and over is this. If we have aphasia on any level and we come to you with a question or even what seems to you like a simple statement, rest assured saying it and saying it right are so difficult for us that we have likely as not been practicing our few lines to make sure we get them right and to be as sure as we can over the non-dumbness of the statement or question. Alot of effort went into that, so when this happens and we either get ignored, ppl act like they are listening and sometimes even emit a semi-random response, you know damned-well they didnt hear or understand a single thing you just worked so hard to makes the fuck-it fuse blow just dont see the return in trying so hard anymore.  People might start to think me as apathetic but guess what buddy, you earned it. 

Its like if you created a web page and then started trying to give policy advice to someplace line Bosnia. At best you get a polite thank you regardless of the value of your advice but in reality since nothing you say will ever matter there, life goes on, you continue to be ignored and in the fullness of time say....screw this. Its like talking to an empty room and it might as well be for all the difference that you make.

Eye-Hand Coordination

This isn't the classic Parkinsons tremors; rather my problems are at the macro level so I don't miss putting the can in the garbage by a few inches or feet, I stick it in the freezer or oven. Think its linked back to the executive function/frontal cortex damage but I can't do anything with my hands and idly think of anything with my mind, the hands start going rogue, doing what they want and once this starts its like I am beating my fists on a broken control panel. I watch my own hands doing unexpected and unwanted things; it feels like I am watching a movie of someone elses hands, thats how disconnected from them I feel. Makes doing...everything hard. 

Not being able to interact with your environment is a tough one to overcome...

Loss of Working Memory

This one is new and in many ways the most debilitating of all. So that we are clear, we all have two basic kinds of memory, long term and short term or "working" memory. Long term is what it sounds like, childhood memories, graduating school, your first love, etc. Short term isn't exactly the same as working memory but the distinction can be tricky. Short term is the conceptual opposite of long term memory, in short stuff you might remember for a short time (weeks at most) but is usually of trivial importance and is easily forgotten. Working memory on the other hand...

Working memory can be thought of as memory that is specialized at keeping track of dozens of small details relating to each task you are doing. For example, say you are sitting in the living room, playing a game with your family. The score is 2-3, you need one more win to tie the score, you and your partner have a plan to win and you have practiced this alot to be sure and bring your "A" game. 

Then the doorbell rings; you must mentally put a pin in all the information about the game and whats going on in it so that you can deal with the salesman at the door. You put your mind and heart into it because the last thing you want to do is deal with someone who wants your money and you would rather be playing. You deal with them and a minute later you rejoin your family in the game, you pick up right where you left off and proceed to have fun. 

It is the working memory that puts all that game-specfic information on-hold and once you are done with the door, brings it all right back for you to use. You don't have to think about it, its just "there".

In a person with damaged working memory, like me, the same scenario might work exactly the same, including me being mentally totally into the game and the door bell rings. The *instant* my focus or context is switched to the door, ALL information about what I was doing is simply gone. Its gone before I get to the door and I know it. It would be like you getting back from the door, you walk back to your family and the game and...keep on walking because you have no idea you were actually doing something specific and you are off to get a snack or something else to do or maybe a nap sounds about this happens like clockwork and if I can't stay focused, if I get distracted by anything at all, the task I was working on is lost to me. Sometimes for a while, sometimes for good. This is why when I am struggling to get to the end of say a video game or even some simple task like hanging a light and the missus comes up and tells me about some appointment coming up next week, I want to burst into tears, not just because I lost any chance at doing what I was trying, but also because it was for such a stupid and frankly worthless reason. All I can do it either try to ignore them which pisses off the speaker or I can just say fuck it and let go of whatever I was trying.

This may sound like a passive problem until you consider a simple situation like, oh I am cooking, I get called to another room for one of those "where are my socks" questions and bingo, the cooking task is a distant memory and soon the smoke detector is going off. Oh ha fucking ha.

Reduced Cognitive Functionality

The rest of the things here are primary input or output related but pure cognitive functions have take a hit and when combined with the above, it means I spend my days trying to play games I no longer understand how to play, I watch movies and TV shows that I just can't follow anymore, I might read the same page of a comic book for an hour and get nothing from it...

Aside from growing cannabis, which I am no longer in charge of and do only a minimal amount of work to maintain...I end up doing nothing of consequence, not completing a single level of a game or grasping and enjoying an entire movie or graphic novel, I can't learn anymore...that I think might hurt the most....

So the sum here is a severe loss or drop in:

* Communications

* Eye Hand Coordination

* Working Memory

* Cognitive Ability

So my posting anywhere including here will soon become less to the point of being non-existant. To any readers finding this later, I am sorry, I had to go. There are simply too few things in this reality to hold me here....I guess I am posting this as what *could* be a final post on this stuff, I am expecting no later than within the next six months to be non-verbal and "lost in his little world" mentally. In any event I won't be writing here....since I started this blog not with the idea of riches or fame but rather a document repository on things pertaining to dementia, LBD or cannabis growing for the disabled. Hoping someday someone else might stumble across this who needs this information for themselves or perhaps their patient.

One small hope is a certain charity has considered taking over the site and/or taking on the dementia-related columns...

If it works out that way, cool. If not I am sure I won't be in any position to care.

For those that are forced to remain here, its been real. For those with dementia, I will meet you on the flipside of reality when you are ready....


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