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Showing posts from March, 2019

Entering Another Phase

For the first 58 years of my life I have thoroughly enjoyed eating. To the point that I’ve been obese most of my adult life. Let’s just say I have had very few people in my lifetime tell me I needed to eat. That is until my wonderful strolling companion, LBD, and I made it much farther down this dark path we so often traverse and turned around a brand new bend in the path to discover I am being precocious in my progression. You see, almost all dementia patients lose their appetites and eventually refuse to eat but this usually occurs very late in the disease process, ie., the shutting down of systems toward the end of life. I, on the other hand, apparently can’t wait that long. 
Approximately 4 months ago I started losing my appetite and becoming nauseous after just a small portion of my meal, to the point of vomiting on several occasions. It’s not that I’ve lost my taste for food, on the contrary, food may possibly taste better than it ever has. I don’t have an aversion to food, I’m n…

Can We Do More

I recently read a Facebook post concerning my uncle who is in the beginning late stage of Alzheimer’s. It was describing how he had become belligerent on that particular day and no one was able to calm him. No one that is, until his grandson, who is an aide at a local skilled nursing facility stopped by. He immediately put the skills of empathy, distraction, compassion, understanding, and professional knowledge that he had learned through years of interaction with the elderly and those with dementia to use. Soon, my uncle was the calm, genial gentleman we were all used to. I was truly touched by this post, the caring of this grandson for his grandfather, the recognition by the others in the situation that they were ill equipped to handle the emerging issues and their prompt call for appropriate reinforcement. It was an inspiring post all around.

That is until I read the comments. Many were like mine above, complimenting the grandson, sympathizing with my uncle and the family, worryin…

Grappling with the Obvious: Is my apathy real or imagined?

Had some sliding lately, leaving me with one hell of a conundrum. I am posting at HU first because I really seek the knowledge of the readers. Even if you don't know, it is still a data point. Here is my puzzle:
* Many dementia patients develop apathy towards many things in life.
* I can sense what may appear to be apathy in my own behavior. In truth, maybe half of it is apathy, the rest is usually apathy resulting from confusion, not understanding the matter at-hand. This addresses the first group.
* I do feel apathy towards things I know I cannot change, ranging from the weather to the president. I feel that is more pragmatism than apathy but tomahto, tomato.
* Maybe closer to the point, I and others like me don't stress or dwell on our expiration date. To us, it is just that, a date, when you go, you go. Not bravery or any special insight or any of that happy crappy, I know I cannot change it and for many more very real questions, I am OK with it.

Post-Plateau fun: Sudden, Unexpected Loss of...Everything.

This will not be a long post; I am still dealing with this but given how quickly it came on, and how completely disabling it is, I felt a need to share.

Recently I went through a pair of plateaus that seriously set me back some, ability-wise.  Since I spend much of my time sitting or laying down, I am unsure when exactly this started but since then it has been every day or every other day.

The sequence of events look like this:

I am standing, walking, talking/not-talking, doesn't seem to matter. Everything seems normal.

1 Second later, the room and actually my perception of my reality feels like it has been blended with a Picasso painting or something. I am forced to lay down on the floor exactly where I was standing until it passes.

I must also shut my eyes tightly or even the floor feels unstable.

In a minute or less things are normal; afterwards I feel mentally exhausted.


* There are no common patterns preceding the events.

* It doesn't feel like dizziness or the lo…

A Dream of a Lifetime

All kidding aside, this is the story of one of the most improbable of meetings. For one thing, how many of the people you meet on the 'net do you meet IRL (In Real Life)? Wait, before you answer, add in the fact that both you and Person B (gawd I hate how our politics colors our daily speech...) are fully disabled, living on opposite ends of the country?

And yet, against all odds, it actually happened. Randy and I "met" ....I don't know...year ago? My sense of time has been fubared for a while now. It was on some other forum for afflictions vaguely like our of us posted something and the other responded and from there we figured out we might have been separated at birth. First we both have Lewy Body Dementia, secondly, we are in the same stage of the progression, so we have a lot to share right there. Not to sound too weird but when speaking about symptoms and things that bedevil us, its like we started finishing each others sentences.

At first I think the…

Dementia and Illness: A Match Made in Hell..

Like most other people on this planet, I have gotten my cases of colds, flu, bronchitis, pneumonia over the years and in every case I was able to focus on when I would get better and so had an easier time of things because of it.

With dementia though, those same simple illnesses can feel like cancer or something. First problem is if your cognitive far enough gone, you don't understand what is happening to you. Some part of you might hear your caregiver or other "adult in the room" explain that you have a cold and must simply get over it. Maybe. What is for sure is the fact (to you) that you have never felt symptoms this bad before and have a hard time accepting "a cold" as a diagnosis.

The cognitive dementia I experience seems to like me so much, it brought friends in the name of the aphasia getting way worse in correlation to how bad the overall illness feels. The other friend comes in the form of complete loss of sense of time. Because of that, you might be …