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 The Lewy Body Cycle: Patients Perspective 
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Joined: Fri Mar 10, 2017 11:36 am
Posts: 135
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Post The Lewy Body Cycle: Patients Perspective
The Lewy Body Dementia "cycle" is apparently something unique to LBD
(as opposed to say Alzheimers). I am sure every patients' cycles are a
little or a lot different so going forward understand this is what is
true for me. Lewy Body cycles for mean that a few times per day I
might go from being sharp, decent memory, physically agile to unable
to speak without difficulty, cognitively my brain feels fogged in, my
coordination is gone. Few hours later, I am back again....until next
time.

When I am in an up cycle, I feel like I am part of life and whats
going on around me, I *know* whats going on around me for that matter
and I am very curious about things, I like inventing things in the
same way I did in my previous life. I am very self-motivated, I can
plan some things to do for a day even if they are relatively simple
but I can carry out what I said I would do. It still amazes me the
things I do now that I am so proud of finishing and maybe even doing
it right. Before these things were just another minute in the day. I
can read books in this state, enjoy things with complex plots. I find
comedies tedious at best, preferring documentaries and classic
movies. My gaming includes things like virtual environments to
interactive fiction puzzles. I made my living with the PC, creating
and programming them for decades and now, a UNIX command line can
still feel like home. I can do video-editing, simple programming,
interact to an extend with the web. Working on a laptop can be painful
though because no matter how up I am, I still have the little twitches
in my limbs which with a GUI or graphical interface can lead to losing
work and difficulty working with graphical objects.

When I am in a down phase most video games are beyond my grasp; if I
am lucky something like an old 80's platformer might work but most
likely, thats too complex as well. Reading is out for sure, even a
book I have read before. TV can be OK but its gotta be something
simple. Animation like the Simpsons can seem funny as hell. I can do
comic books if I am already familiar with the story. I have a pretty
sizeable comic collection; who knew I was saving reading material. The
computer is pretty off-limits at this point; I can't even work the
email client so I just give up on that. I might know I want to change
a program on our system but the remote control software is on my
smartphone and its times like these I find myself sitting there
staring at it, knowing it has the capability of (for example) starting
another movie for me but having no clue in the world how to do such a
complex task. I eventually just put it down and try to find something
else to do.

I and others have discussed the elasticity of time to LBD patients;
its always going on and always makes things either better or worse. An
example of better is when you are perhaps having fun for a while,
maybe being with family, maybe playing a game or watching a great
movie; it feels like it will go on *forever* sometimes. You literally
cannot conceive its ending. Example of bad is largely the same thing
only the bad thing seems to go on forever with no end in sight. So
when the computer is too hard to use, you can't seem to function
physically well enought to do anyhthing of consequence like handling
breakable dishes or transplanting living plants, that too feels like
it will go on until the end of time.

And through all of this, you know in your soul there is no way to
really explain this to anyone, not the caregiver or the doctor. With
so much of the world denied to you in this state, apathy can set in
quick; you feel as if you are so disconnected to the world around you
that you actually don't care what happens to it. Its almost as if you
are watching life on a TV set; you can see it but not actually
interact with it. Life isn't a spectator sport and so you start really
feeling an isolation from the real world, like sitting in a boat that
drifts a little further from your home and life on shore every day.

Yet thankfully the Lewy Body cycle is indeed a cycle; in time you feel
"back". Once back I can often view myself in the other state as some
kind of idiot and not for the life of me seeing what I "saw" in the
Simpsons (or whatever comedy) a few hours earlier. I know in time
these cycles will keep spiralling down towards the Cuckoos Nest
(apologies to Jack Nicholson) but like my own end, it feels a 1000
years away and I just can't quite get my head wrapped around it. As
mentioned before I am now once again interested and curious about
stuff around me, watching a documentary and writing this story.

*****************************************************

So what causes this? I don't know and I think the neuro's don't
either. They do latch onto it as a signpost pointing to LBD but aside
from that, nothing of notice. Just something to live with.

Part of my past life was involved with identifying patterns in
chaos. Here are a few things I have noticed in my own behavior:

* I have observed that I can feel fine physically and mentally, apply
myself to some problem be it physical or mental problem or task and
after a while begin to feel confused, I start to stumble and drop
things and if I push myself long enough, I become physically ill
with nausea and body aches. I have described this feeling as being
hung over on moonshine.

* I have observed that when I am able to make a note of what was going
on when I start to slide into a down state, it is invariably that I
was involved in something deeply, be it just having fun or playing
an active game or performing some task for a hobby I have. I am
pretty certain of this pattern.

* I have observed that the depth or impact of the down cycle can be
dependent on the mental or physical activity level expended prior to
the down-cycle. I am *reasonably* sure of this one.


This is all I have at this point but my theory is if activity of any
kind can be a predictor of cognitive and other difficulties, that
might be managed through feedback or some other mechanism. Before my
brain or whatever becomes over-wrought and fails me, I can hopefully
see it coming, reduce pressure or stress on whatever is being
pressured or stressed. This could reduce the severity of or possibly
even eliminate the down-cycle. This is a worthy goal because it could
lead to a more peaceful existence in the coming years.


Sun Apr 02, 2017 6:13 pm
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Joined: Sat Mar 04, 2017 10:02 am
Posts: 35
Location: Near Fort Bragg,NC
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Post Re: The Lewy Body Cycle: Patients Perspective
Dude, you can sure write though...lol. I understand what your saying I have a lot of apathetic times were I have NO interest in hobbies etc. sleep a lot, going into depressed state. Sucks. I wanted so long to enjoy doing stuff I wanted to do in retirement, now mostly meh. Yes I'm on anti-depressants.

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Sat Apr 15, 2017 9:28 pm
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Joined: Fri Mar 10, 2017 11:36 am
Posts: 135
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Post Re: The Lewy Body Cycle: Patients Perspective
Jilytibrme wrote:
Dude, you can sure write though...lol. I understand what your saying I have a lot of apathetic times were I have NO interest in hobbies etc. sleep a lot, going into depressed state. Sucks. I wanted so long to enjoy doing stuff I wanted to do in retirement, now mostly meh. Yes I'm on anti-depressants.

Writing was a big part of my life before this so I guess that helps now. I am on no anti-depressants for a couple of reasons, one is the longer I can go w/o getting pharmaceuticals mixed into my already mixed-up system the better due to the bizarre reactions LBD folks have to common meds. As it is, to deal with the reality of life now, I have adopted what I hope is a healthy dose of pragmatism combined with my own home-grown anti-depressants which work just fine. I will end up the same as everyone else but at least I will enjoy the ride ;)


Sun Apr 16, 2017 9:53 am
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