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Showing posts from May, 2019

Joint rolling with disabilities: The Grindarolla to the rescue!

Greetings, Jeff here. As you may know I am and have been on a search for streamlined ways to use cannabis to manage the symptoms of this horrid disease. I have seen enough empirical evidence to be certain it works but the use of cannabis has traditionally been the thing that the normally-abled have done, and of those "traditions" that has been out of reach for anyone with motor-skill issues is rolling the common joint, just about the most basic and inexpensive method to consume.

Even being fully-abled doesn't mean you can roll a joint either though, don't let anyone tell you differently. I have been toking since the 70's and while I have consumed through every method known to man, I have yet to be able to roll a joint on my own. Sure I can use a machine in a pinch with so-so results, usually rolling the dreaded "pencil" where the machine over-packs the joint and it becomes hard like trying to draw through a....pencil. For the most part I just gave up a…

I realized that I am now a stone skipping on the pond of reality.

Jeff here with something else I wish folks could know about Lewy Body Dementia. Maybe AD and PD folks are like this and just can't tell us, I don't know. The understanding on all of this is pretty weak for everyone.

However I wanted to be CFB about something...I get asked alot how I am doing and if asked at the wrong instant, I do what I normally do and answer very literally and if that instant is very wrong, I describe the effects of being in a down-phase (fog, motor-skill difficulty, aphasia is worse, etc) that person begins to assume thats how I am all the time at this phase of my degeneration. Not true or at least, not accurate.
Explained elsewhere Lewy Body Dementia patients cycle in and out of various degrees of dementia throughout the day. Little pattern to it, can happen any time, last for any time.

Here's the thing though: when you start with this stuff, you spend 90% of your waking day in your up-phase with only occasional dips into dementia. As…

Changes Can Be Good

I’ve never actually been a person who is moved to tears by random exhibits of love, sadness, fear, etc... I didn’t tear up when Mufassa died, I didn’t weep when Harry met Sally, I didn’t sob when Bambi’s mother met her untimely end. Now, don’t get me wrong. I’ve never had a problem showing my emotions to those near and dear to me. I’ve always felt it important to let those closest to you to know how you feel about them. But the normal “tear jerkers” just never had any real effect on me.

That is a until the past year or so. If I’m in an upstate then I’m the same old emotionally stabile person I’ve always been. But when in a down state, someone describing their happy childhood is enough to send a tear down my cheek. Someone expressing the deepest depths of their love: I’m actually quietly crying. Someone losing a person close to them: I’ll be sobbing into my hands.

Although I don’t see anything wrong with being in touch with ones emotions, this sudden burst of emotional outpouring is al…

For approximately the past month or month and a half, I have been in a continual deepening fog. This is not necessarily unusual except for one major irregularity. In the past, I have always been able to just “feel” that the end would eventually come and I would cycle back to my “normality”. But not this time. 
Now, during this extended period of confusion, I can see or feel no end. It just seems this fog is so pervasive, so heavy, that there is no possibility it will recede, that this one is all but inevitably irreversible. It was with this in mind that I sat down with my wife for a discussion I had been avoiding for sometime.
Some of you may remember my post on starting the process of exploring senior care facilities, especially those with memory care units. Well, although that first visit was extremely informative, it was also extremely distressing for Karen. So much so that I believed it prudent to put the whole subject to bed for awhile. But with my recent developments, I fe…

Anatomy of a Complete LBD Cognitive Cycle

One thing I have learned since starting to have to deal with LBD
first-hand is that there are alot of mis- or non-understandings about
it. One of the bigger ones I keep running into is a damned-near
complete lack of understanding of the Lewy Body Cycle. I have sort of
described them objectively elsewhere; this will be a sort of day in
the life thing only it will reveal what it is like for me to live
through these everyday.

04:00: I awaken from my token number of hours of sleep, brain is
operating at about a 5/10. My wife is already up as is her habit and
she tries to tell me about a few of the bigger stories in the news.
Little sinks in. I can see the disappointment on her face that I
didn't share her outrage about something but the truth is, I
understood about 5% of what she said.

I attempt to read the news from last night. Some stories get too
complex too quickly so those I skip for another time or state of mind.
The ones that are not too complex, I don't really understand the
import of the…

Dementia Therapy

Greetings on a weekend kids! For many reasons I have been meaning to get around to this and yesterday finally had enough fog-limited hours to complete the work. It is a very general Public Service Announcement for Dementia Therapy. It is meant to be a little sad, a little fun and a little informative. YouTube censors didn't like it but guess what: this is what works and sends the message in a way that I am otherwise unable.

So if you are demented or know someone who is, take a watch....


Time Is Slipping

I’ve known for some time, and have written about it several times in posts to this site, that my sense of time was faltering badly. But a couple of incidents lately have really brought home just how broken this sense truly is. The first came a few days ago when we took a short trip to the home health store to pick up some BiPAP supplies, a 10-15 minute trip, depending on traffic. Well, n this day, it seemed we had to stop for every traffic light, the volume of traffic was ridiculous, and we just weren’t making very good progress. About half way to our destination I started to panic. As far as I was concerned, I could not remember not being in the van that day. I felt as though we had been traveling for hours on end without break. It seemed as though we were destined to forever live in that vehicle, never again to stop, never to get out and stretch our legs, never to make it home to the relative safety of my recliner. I realize now just how unreasonable those fears where but at the time…