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Showing posts from October, 2019

I get to keep my credentials....my nerd credentials that is...

It is funny how times change...I was born in 1961 in the land of far, far away, AKA Kalamazoo, Michigan. Eisenhower severs diplomatic relations with Cuba, John F. Kennedy was sworn in as President of the United States and a chimpanzee named Ham had his ass shot into space, all in January of that year. An auspicious start to things, if you do enough drugs and look at them sideways.

I think I was born a nerd...which was far from a cool thing in the '60s (or '70s or '80s or most of the '90s either) and in fact I had this poster on my wall during middle school that inquired "Are You A Nerd?" and proceeded to point out all the (distasteful) traits of the nerd. Looked like this if curious:



I think I was twelve or so at that point...and was the only kid on the block with: a home made arc furnace in the basement, home made electronic security system including a very James Bond style hidden safe that you could only open by adjusting a faceplate on an electrical socke…

I'll Be There

I heard a new, well...new to me, song a few days ago called Even Though I’m Leaving I Ain’t Going Nowhere. It tells the story of a father and son, throughout their lives, in three basic acts. In the first act, the son is a young boy, asking his father not to go back to his own room because there are monsters in his room and he needs his father’s protection. Of course it ends with the father telling the son that even when he’s not here, he’ll be “there”. Hence, the title of the song. In the second act, the son has joined the military and is about to ship out when he realizes he needs his father. Again, the father reassures him he’ll always be “there”. Then, in the third and final act, we find the son at his father’s bedside, realizing the father is almost gone and then realizing he will be all alone and can’t do it on his own. One last time, the father reassures the son that he’ll always be “there”.
I know, I know, it’s a bit formulaic and predictable but it’s a formula that has alway…

CBD: It's not just for breakfast anymore...

News Flash: Sciatica Sucks.
When it strikes the pain can feel like lightning shooting through your spine. No drug or analgesic prescribed by your doctor will help much, if at all. To cap it off, the way sciatica works, that shooting, burning, searing pain you feel which leaves you in a quivering ball on the floor is largely just in your head.

What is sciatica? The Short Course:
Sciatica is an amazingly fucked up condition that can strike you at any point in life, there is no predicting or preventing it, once you get your first sciatica attack, its just that: the first. This will repeat the rest of your life and once they start your only option is to ride them out until the painful end.

Why won't pain meds help?
The condition starts when some part of the spinal nervous system gets pinched, usually in or near the vertebra. Its not the pinch of the nerve that hurts though; you may not actually feel it much. Its what happens after that hurts. When the nerve is pinched off long enough…

Me and my blank mind

Unfortunately, I seem to have hit another bump in the road concerning my writing skills. And it's making me feel as though I'm letting both my family and the readers of my posts down. I set out to document, from the patient's point of view, what the day to day life living with Lewy Body Dementia is truly like, the good, the bad and the ugly, no matter how ugly it became. But I fear I can no longer live up to this ideal of documenting all facets of this life.

As of late, it seems as though there is nothing in my warped little brain wanting to fight it's way out. I find myself staring at the walls, thinking of absolutely nothing and having not an iota of an idea of what I had been thinking of. It happens while I'm trying to pay attention to something, I just gradually slide into my dream world without even realizing it, only to return to the real world quite surprised to learn I had ever been missing. Even when I'm mostly aware of my surroundings, I find that my m…

Hempy Buckets: A Safe and Simple Alternative for the Disabled Grower

Greetings Kids, Jeff here with a little life lesson...no matter what to do or how you are set up, if you have a degenerative disease, there will come a point where the more sophisticated and high-production methods become too much and you are faced with that or giving up growing entirely.  In point of fact, I am at this point myself...when I first started growing with the idea of growing while disabled in mind I studied as many different methods of growing as I could find, just to have as much fundamental knowledge as is possible. Hempy buckets are an older method of growing going back quite a ways...I looked at these a few years ago but could not figure out how to make them work with the rest of the system I had designed and was working so they just became interesting ideas.

Well now that I am struggling my good friend and grow mentor reminded me of these...I had to do some refresher work but realized these could be a good middle-ground between struggling with a bigger system and gi…

Living the life given you

Where has my life gone? The one that Karen and I had always planned for as we reached our "Golden Years". The one that included our going from college town to college town in 3-4 year intervals, Karen teaching (she loves to teach and is very good at it) at the local community college, college, or university-
learning all about the local history, making new friends, and just immersing ourselves into a new culture every few years. The one where, after a lifetime of caregiving for others, we could just turn our attentions to each other and enjoy our newfound freedom. The one where we could take long walks, hand in hand and share our deepest secrets and desires. The one where we could be involved in all of our granddaughter's extracurricular's to the point of her embarrassment and our unending pride. The one where we just... could...

I find myself mourning for that lost world on occasion. It saddens me that my granddaughter might need a ride home from school after academic…

Caveat Reador: I am almost not enough left to push this further...

Hey Kids, Jeff Cobb here. Thats more of a statement of mind than anything. I am approaching a crossroads of sorts, a nexus. My abilities are dwindling quicker than I would like and since I have run this since the get-go and have no sane assistant, its getting harder and harder not just to stay on top of things but to make sense of them at all.  Focus comes in smaller and smaller doses, while the span of my working memory seems to shrink daily, making most tasks "lost" between conception and commencement.

I am not giving up, though at times its hard to see why not. Not speaking of death here; that will come on its own. I just mean once the daily humiliation reaches my personal FUCK-IT threshold, there just don't be any chance of gain in trying things. And I will retreat further into my mind. I have already been there alot and have a summer retirement world all picked out. Its not finished yet, there is much to do before full time occupancy but for now its an investment i…

The Alt-Comms Challenge

As most of you may know, aphasia is a common symptom of brain damage such as what degenerative brain diseases can do. What many don't appreciate is you actually have and use many different channels for input and output so if your aphasia affects speech, I would starting looking down alternative channels for IO (input/output in 1000-year-old programmer-ese). This may sound ineffective or way harder than normal speech but consider for the patient its likely this or nothing at all.




Challenge yourself and your patient (or caregiver) to explore other mediums to see how far or well you go. Here is a f'instance to get you started. If spoken and/or written word is too hard, try holding a conversation using only imagery; Google Images is your friend here but the point is to see if you can express yourself using a more conceptual or figurative channel for communication than the literal, spoken one. Its a challenge but thats why I called it a challenge in the first place...but it should…

Vendor Alert: Americans with Disabilties should steer clear of DHGate.com

Update 25 November 2019: Hmmm seems this article is starting to trend on Baidu.com the Chinese Google. No idea how many can read English but I guess the Asian world gets to see how shitty DHGate is to customers first-hand.  Long way to go to find your neighbor is a criminal but thats the world we live in....now if I could just get the rotten bastards to quit spamming me....it only took a dozen complaints and letters to get them to close my account, I suspect I will be room temperature before they stop spamming me. Thats fine though, I have time on my hands and can update this story for a long time and flood them with links to it every few weeks as long as I am able to.

After their actions I am SO SORRY I ever said anything nice about them or worse, encouraged friends to spend money there. I am so very sorry.
 Update 22 November 2019:
Still nothing from the unhelpful manager at DHGate, kinda figured they had no intention of making anything right, criminals that they are. I guess they…

Dementia PSA: Why we get cranky sometimes

Seems some people assume fighting dementia is like exercising, no pain, no gain. The problem is for us, you push us too far or too hard or too often, or we do it to ourselves we end up descending further into the dementia, sometimes making it part way back but most times not.

When I first started fighting the LBD I figured like everyone else that if I spent the rest of my MCI time constantly pushing myself, in the way you would push unused muscles, I would somehow last longer, remain "Me" longer. The problem is, after a year to 18 months of this I realized almost every time I had a plateau which resulted in a permanent reduction in cognitive ability it was immediately preceded by me or circumstances pushing me beyond my capabilities. I just got worse, not better and if this somehow slowed things, it is not obvious to this observer.

So to test this I purposely toned that crap down, not stressing myself as much as possible, not letting myself get into situation th…

The Whistleblower: A Perspective From Someone Who Actually Worked With Them

I hate the Republicans and Trump for forcing me to write this. The current thing with the whistleblower and all the events following it, the Republicans are trying to have you believe something to the effect of: 
● The Whistleblower was partisan and had ulterior motives for reporting our biggest security problem, Donald J. Trump.  ● He or she had no first hand knowledge and therefore were not to be believed. ● They were listening in on the phone call in order to trap Trump  ● Trump is suddenly cutting the NSA staff out of fiscal concerns 
Now let me explain how this looks from my POV. First, there is a whole segment of the security structure dedicated to monitoring the phone lines of those people with any serious security clearance. People make mistakes and say things on an open line; others are out and out trying to disseminate classified information. Regardless of the reasons, they listen. They are not some secret cabal of spooks, they are workaday people like you and me, on shift …

I Will Meet You at the Crossroads...

This is a story already too long to tell, or at least, tell it right. It started as one thing, became something else due to circumstances, and now represents something both alluring and frightening, seductive and very final. Let me start at the beginning.
Originally Randy and I had been comparing notes on a pretty unique subject. I will tell this as best I can. Traditional dementia logic or wisdom has it that the disease eats away at the brain and over time there is less and less there. In fact as this worsens, everyone from doctors to kindly family members start to assume that is less there and therefore by definition, more is simply “gone.”
I am not angry with folks who think that; they have no other clues to follow, they are doing their best, they in most cases have no evil intent. They are also wrong.
You see, there is a place. Each dementia patient either has or can have his or her very own. When you start down the dementia road, your world shrinks. When you start, you are like …