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Showing posts from June, 2018

And now for a word from My Mouthpiece...

Hey kids, Jeff here with something new for sufferers of expressive aphasia or the losing the ability to say what you mean to say. Or write. As my aphasia has gotten worse I have had to give some serious thought to what I would do if I were alone (without my caregiver), at the emergency room and needed to convey important information to the ER nurse...or I was out in public and for some reason was stopped by the police...or for the more common problem of some mornings when I feel the worst, I am least able to express what is wrong to my caregiver and so just give up and live with the misery.

Most of the solutions I have seen so far have either relied on language too much (which is why even sign-language users can suffer from aphasia, just like anyone else) or were too limited in scope. For example I can have the best talker app in the world but it will be worthless if it cannot list my current medications for a doctor or to pass on the phone number of my caregiver during one of my occ…

Fade to black....

Often when we talk about what dementia is like, it is referring to how it is right now, at the time of the writing. We don't track what it is like over time, but time can be as revealing as anything else in this conversation. One problem that is always a part of this though is that there are simply no words to adequately describe what dementia is like from the inside. It is hard to paint a picture that really explains things to those who don't experience it for themselves. This is the best I can do; this applies only for my dementia. As the gas commercials used to say: "Your mileage may vary."

One of the things that was damaged in me was the ability to focus. Of all available input, choosing what to focus on and what to ignore can be impossible to do with intent. I can't shut out "noise" to concentrate on the "data". I have no choice but to try though. It goes like this.

Back during the election, we ran across the John Oliver show called Last…

Cannabis and dementia

Greetings, Jeff here. While there has been some therapeutic ranting on here of late, that is far from the only motivation behind this blog. One of the other primary scopes of interest will be in using cannabis for treatment of the symptoms associated with dementia.

That may sound unlikely, a psychotropic drug used to treat a mental issue so please allow me to be CFB as we used to say in the Army.

I have dementia myself from the Lewy Bodies growing in my brain and therefore speak from experience.I live in Nevada, where cannabis has been legal for some time for medical use and this is our one-year anniversary of recreational cannabis being legal. The result of this is, when I am using a specific preparation of cannabis to help with my dementia, I can use specific laboratory results to back up my claims and to help establish patterns of efficacy. The further benefit is that I am free to try a much wider variety of cannabis than I would in a non-free state.When I state cannabis can help w…

Yes I hate the SOB..

Jeff here. I needed to clear something up: I hate Donald Trump and everything he represents. Hating him is the only logical reaction any human can have about this charlatan.  It has nothing to do with politics, his racism or his alleged wealth. Allow me to explain:

It can't be about the politics because the politics are stupid. To be clear: I am not a Democrat, Republican or anything in between. Prior to this election, I didn't really even understand what they were or how they differed. This wasn't something that ever was a problem or touched my life for the first 55 years. Now that I know what they are, or are supposed to be, I see that they highlight just how broken this system is.

From within their little bubble in Washington, this is how America is perceived by politicians:


These politicians see America as nothing but either Republicans or Democrats, as if every one in America fit with one of those ideological molds. The sad truth is, this two party system made sens…

Trump’s America Is Difficult To Understand

How far can this administration go? As someone who often isn’t playing with a full deck and sometimes has trouble seeing things for what they really are, I’ve ridden the crazy train that is the Trump administration about as far as I can go. It’s never made a lot of sense to me but it’s completely gone off the rails of late and my fragile mind just can’t take the nonsense anymore.

It has definitely gotten weird enough for me...

"Well I guess if I had to swear one way or another, I'd say Lazlo wasn't insane. He just had very strange rhythms. But he stomped on the terra. Lord Buckley said that. It's hard to say he got what he deserved, because he never really got anything, at least not in this story. And right now, this story is all we have ... It's sad. But what's really sad is it never got weird enough for me. I moved to the country when the boat got too crowded. Then I learned that President Nixon had been eaten by white cannibals on an island near Tijuana for no good reason at all. Golly, you hear a lot of savage and unnatural things about people these days. Lazlo and Nixon are both gone now, but I don't think I'm going to believe that 'til I can gnaw on their skulls with my very own teeth. Fuck those people, huh? If they're out there, I'm going to find them, and I'm going to gnaw on their skulls. Because it still hasn't gotten weird enough…

Is it them or is it us, redux...

Greetings. I am here to tell folks who don't already know something about dementia. Doesn't matter who you are or what your root cause is (AD, etc), you are effectively demented after a certain point and at that point, even the simplest and sanest things around you can be confusing to the point of distraction.

Under normal circumstances, this is one of the bigger things the dementia patient has to deal with, and make no mistake, it can be hard under the best of conditions. However, as shit-ass bad luck would have it, just as my Lewy Bodies were robbing me of my ability to understand, the current administration took over and all hell and chaos broke loose. People don't realize that dementia folks can maintain their rather tenuous grip on reality only by relying on norms and routines or customs from their life before. Take those norms away and suddenly the dementia patient who was just hanging on before feel cut loose mentally, rudderless in their attempt to navigate the re…

The Road Ahead

Where things go from here... Greetings, Jeff here. While I am a single voice here (Randy being the other) I hit a plateau of late that requires I set down some rules, not really to rule anything but to manage expectations as things progress. Randy is free to follow or not as his particular dementia progresses.

Wait, whats a plateau?
Unlike things like Parkinsons and Alzheimers, the progression of the dementia is not even close to being linear. You go along with one set of capabilities for maybe 6 months and suddenly something happens, perhaps a trauma or some on-going situation may have stressed out your ability to cope with your environment. For example, one recent plateau was triggered when we lost our air-conditioning in the home last summer. We live in Las Vegas and the temps were between 110 and 120 for weeks. We tried to tough it out (big mistake) but by the end it was too much for me and as happens with all plateaus, the abilities you start with are not those you end-up with.