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 Greetings from Las Vegas 
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Joined: Fri Mar 10, 2017 11:36 am
Posts: 135
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Post Greetings from Las Vegas
Greetings to one and all. My name is Jeff. I feel lucky to have at
last landed someplace where folks might know what I am going on about.


I was diagnosed with LBD in August 2016 but that was only after 4
years of struggle, some to convince a recalcitrant insurance company I
do indeed have brain damage, some a recalcitrant me that something was
indeed wrong with the old nugget. Some of that pain is reserved for
the 101 doctors I tried to get to sort this out. I won't go into the
stuff they tried; felt like a medical version of The Gong Show after a
while, culminating with a local neurologist who was more Amway
salesman than doctor. I am just lucky for a few key things:

* All the above said, I know I got diagnosed early. How and why that
happened will be addressed next but the fact that it did at all is
the miracle. It seems like LBD is one of those things you don't want
to catch *late* or too late even. Because of what it is (dementia
amongst other things) BUT it isn't Alzheimers, stroke or any of the
usual suspects of brain damage, this leaves most of the medical
professionals I ran into stumped. Still I got diagnosed early enough
where I can spend some of what my speech pathologist calls my MCI or
mildly cognitively impaired time with my wife. IOW the dementia
hasn't taken complete control, just during the "down" phases.

* Another reason I was lucky and got diagnosed early is (warning:
approaching theory here) the fact that I have made my living for a
good long time pureply with my mind designing and writing computer
software for 25 or so years. How is that lucky? Well for one thing,
you get to really know your own mind when you do that gig and so
when specific parts start to break down, you recognize that
*something* is wrong, amiss, FUBARed, pick your term. I found value
in that even if I did know or understand what was wrong. The other
lucky part (I say with a bit of a sour expression) is that I was
working at Sony in San Francisco on PS/3 stuff when it got really
bad to the point it was damanging my work. Sony is a great employer,
in many ways the best I ever had and I did my very best work for
them too. Thing is, this was my second time working for them and
that made all the difference. I worked for them before in 2007-2009
or so when I needed to move from SF to someplace warmer for my
wife's fibromyalgia; just nothing we did bought her any peace in the
cold damp City. Thats we picked up a repo place in Las Vegas and
ended up living there. I got bored after a while here and when
Google started nosing around I called my buddies in SF to see if
they knew anything about them....when they heard I was interested
and on the market again they snapped me up so we ended up moving
back to SF and I was working with the same-ish team again. The
actual luck comes from the fact that this is when the symptoms
started getting bad; they knew I wasn't on drugs or crazy (haha,
jokes on them) and that I was a good engineer because they saw my
work before and the change was obvious to them. I was in denial at
this point but eventually had to admit to a problem and was
involuntarily put on STD (short term disability, not sexually
transmitted disease; that happened back in the Army) and the testing
games began from there. One of the confounding things about LBD is
the way cognitive and sometimes physical abilities can swing wildly
throughout the day and you need to be in front of exactly the right
doctor at exactly the "wrong" time before most will see anything. My
swings happened and still happen sometimes with such suddeness I can
lose it in the middle of a sentence. Anyhow, if I had not been
working with people who knew me and my job hadn't been so
brain-oriented, this could have gone on for a long time, much longer
time.

* The final thing I will list here as "lucky" is as much a
double-edged sword as anything else. Thats means in my case I can
wake up like today, have this acceptence to the group in my mailbox
but be literally mentally unable to respond, let alone work
something so complex as email (as it seems at the time) for many
hours but then suddenly the fog clears, I can think again, I am
curious again about the world around me where I was pretty apathetic
before and now I am not only authoring this response/first story but
also testing out a new fix for my hydroponics setup in the
back-ground. Not much compared to before but for now, pretty damned
good. But by dinner the nugget could be right in the toilet again,
when I go to feed muyself (independence is important to me) I might
not be able to reason out how to open that box of cereal and
completely destroy it trying to get at the cereal inside. Its that
up and down stuff that feels like it will be the thing to actually
drive me crazy. Can't plan anything. Why is that lucky? Sounds
pretty crappy but heres the thing: that also means, at least for
right now I have periods like this. I still have to meet the
symptoms half-way but I can write (speaking is tough so I don't go
out much) and recall much. I am thankful for this time because good
memories can still get stashed and enjoyed plus for a time I can
pretend to be normal again (for various values of "normal"). For
that I am thankful.

Caveats: * The way this hits everyone is different. The last PET scan
showed damage in 5 diffferent areas of the brain. IOW how it hits me
may not be exactly how it hits you. Or hell, maybe it does; I don't
know, I just got here and have been my own "counsellor" for far too
long.

* Everything started with inexplicable falls which are no longer
inexlicable but definitely still present.

* EFD: Executive Function Disorder, the bane of my existence. It has
and continues to pretty much wreck my day-to-day. I have been
watching this for a while and realized its why I trip over things
right in front of me, why I walk into walls and cabinets, it
exacerbates the....not sure of word...when you let you limb lay
quietly on its own and it does stuff...on its own. Not apraxia
exactly, something specific to LBD. Anyhow, the EFD prevents me from
getting things done and that just rubs my soul the wrong way. Been a
self-starter, type-A all my life.

* One weird adaptation to life I have made that sorta works with all
of the above is this. When I work on a computer anymore, the only
way I can defeat the EFD is skip using any kind of GUI that is
constantly shoving notifications, flags, msgs, etc in your face,
demanding attention. Since almost every GUI tries to pack in the
features, that means I work with a command line UNIX system. I know,
counter-intuitive but with less stuff distracting me I can actually
focus long enought to get things done. Not always but definitely far
more than I can if I am forced to use some GUI. Because of the EFD,
if I am focusing and thinking hard on say this response, my hands
can sometimes twitch and with a GUI that can mean suddenly losing
all your work. With this UNIX box, it doesn't matter so I use an old
programmers' editor to write msgs such as this response in
"character" mode, then when done I save it and load it into the web
browser for the forum for posting. Sounds like alot of work and it
is but its the only way I can still maintain some level of
functionality with the computer.

* Expressive aphasia; if I hate the EFD I hate this almost as much
because the EFD actually makes this worse. I can still write as
evidenced here. Speaking is a whole 'nothing thing. My speech
pathologist (therapist for us on Medicare) often says there is zero
doubt of the damage and my problems speaking but if one were to only
read my written words, they would be forgiven for thinking I had no
problems at all. I have always had a good vocabulary and as things
decayed I used it alot to sort of "route around" words in a sentence
I could not say. Sometimes that changed the meaning of the sentence
to such a degree it left the listeners shaking their heads. This was
great fun at in board meetings before I knew what was going on.

* Of late the physical symptoms have gotten worse to the point I have
to adapt to them too; its now beyond the "oh look, I tripped again"
stage. Now in down phases I walk like a new-born calf.

Now in the name of transparency, I need the kind reader to know that I
also have a MMJ license in this state, originally for my arthritis but
what I have discovered is that highly-concentrated extractions of CBD
(where the CBD represents at least 60-70% of the dose and the dose is
1/10 gram) can actually lift the fog from the brain, effectively
turning the lights back on again. Because of the natually-ocurring
antipsychotic properties of the CBDs there is zero psychoactive
properites to it at all. The exact concentration I use is like I said,
60+% CBD and less than 2% THC. Its all in the strain. Anyhow with that
preparation the brain wakes back up for one to three or so hours. My
speech pathologist was astounded at the real "me" and how fast it
happens. Thats the other thing, unlike other meds, we are talking
about like a two minute efficacy window here. Only side-effects are it
makes me hungry as hell and sometimes sleepy but most of the time,
when the brain is woke-up and cooking, sleep is the farthest thing
from my mind. Not saying this will work for everyone, not saying it
will work for me long-term. I also suspect that the exact active
compound has yet to be isolated; CBDs or cannabidiols are compounds
found in cannabis and are the actual part that helps cancery
patients. The THC is the "party" part that most people think of but in
my case, most of the THC has been bred out of the strain leaving
behind the strain rich in CBDs. Not preaching, just happy that
*something* can bring some respite from the process of going slowly
insane.

If this makes me a bad person in someones eyes, well, tough cookies
baby. First I don't have the time to care but second, aside from the
medicinal properties, for two years now I have been cultivating my own
and the gardening aspect of it has brought a surprise sense of peace,
after leaving my last "life" that now seemed to be constantly going a
million miles per hour. Almost a zen thing.

* Memory of course is dodgy as hell but the thing that also screws me
up is my sense or perception of time is really hosed. I heard a
stroke victim describe it perfectly once: I am crazy early or crazy
late for everything. So true; I can tell if something happened
yesterday or last year, or if my next appointment with the speech
therapist (which I look forward to) is tomorrow or next
Christmas. It all feels the same to me. Its hard to tell what causes
what but I also think thats one reason I am not stressing the end so
much, actually not at all. The doctor can say I have 5 years and it
might as well be 500, way more than I can comprehend, sticking into
the "forever" folder making it without meaning. Not bravery, thats
for damned sure. I mean, if some doctor told you hey, the results
are in, you will die of cancer suddenly...at the age of 110. Would
you really, really care? Me neitehr. Same thing.

I have so many questions, so many things to ask about that I don't
know where to begin. In any event, thank you for having me, I don't
feel so alone anymore.........

Peace, Jeff


Wed Mar 15, 2017 1:26 pm
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