my story revisited #138-its still not me yet

MY STORY REVISITED #138-ITS STILL NOT ME YET

i have written this before
12 years ago if you would have asked me would i be blogging today 
i would say no way
i figured i would be in that stage between staying at home and moving to the memory center

well i not there yet
i live at home
i drive safely wherever i want to
i volunteer a lot
i do all the shopping and most of the meal planning
i do all the financial stuff
i do what i was doing 12 years ago 
well except for what gets limited by covid 19

i had normal mris of the brain then and i have normal ones now
my amyloid pet scan was abnormal then and may or may not be abnormal now
now ive never seen my amyloid scan or a report except for the one i had to get into this study i am in now the biogen aduhelm or aducanumab embark study

that first one for the study i was given the report but i didnt get to see the scan itself
it has to be positive to get into the study

if the aduhelm is working like it should be over the next year my amyvid amyloid pet scan should be negative for measurable amyloid
since
aduhelm or aducanumab removes most of the amyloid plaques from the brain

oh how i wish i could see all my amyloid pet scans and tau pet scans i have done

the tradeoff is im getting treatment in return for not getting to see my scans
im ok with that 
but
i would still like to see them

you know like when you have a chest xray or a bone xray you want to look at it yourself
_________
05-23-2014

ITS NOT ME



glucose metabolism scan



these pictures and scans above
show a normal brain on the left
and
an alzheimers brain on the right

the second one is a glucose metabolism pet scan
glucose is used by the brain cells as its energy source
it shows as the red stuff in this scan

a normal brain uses it everywhere
a diseased brain with alzheimers uses little glucose as
the damaged cells just dont work and cant take up
the glucose

the third picture is a amyvid pet scan
it shows areas where amyloid has accumulated
thats the red stuff
amyloid levels increase as alzheimers progresses

a normal brain has very little amyloid
an alzheimers brain has a lot of amyloid

this weekend i went to a caregivers form
one of the speakers gave an excellent presentation on
the symptoms of alzheimers disease
you know what you see when you deal with someone
who has this awful disease

at the end she showed a picture like the first one
it was sobering to me
to see the normal brain
then see the rat holed diseased alzheimers brain

you realize when you see that swiss cheese brain
why your love one cant remember your name
why they ask the same questions over and over
why you cant reason with them sometimes
why they cant bath feed and care for themselves
why they get angry get aggressive
why they may cry
why they seem to lack empathy they dont understand anymore
     what they say and do can affect someone
why they cant watch movies or finish activities
why they wont or cant eat
why they dont know who you are
why they crap in their pants or pee on things
why they cant remember to change clothes
why they wonder off
why they hoard things
why they take off their clothes or do other inappropriate behaviors

look at those pictures
the brain and its interconnections are just gone

its like the phone service communications electricity during storms
like hurricanes tornadoes floods
all the things that make those things work are just gone

so it is with alzheimers disease
its all gone
but unlike those storm things
the brain cant be fixed
and
it will only get worse

so when you deal with someone with alzheimers disease
or
please oh please
if i end up with this disease
and
you see me like this doing all those things
remember oh please remember

its not me
__________
now my brain if you could look at wont look like that bad diseased one in that pathology slide above
i have no brain shrinkage on my mris

if you could look at the pathology slides of my brain microscopically you would see tau tangles scattered everywhere and amyloid plaques

i was to have a tau pet scan yesterday but it was rescheduled for two weeks
this one will show where the tau tangles are scattered in my brain

if i could see where the tau tangles are accumulating in my brain i could predict what symptoms would be showing up in me as the disease progresses

an acquaintance of mine contacted me this week
their parent had alzheimers and died from it
they have been afraid like i was that they would get alzheimers

they are being proactive
they are asymptomatic but they are trying to get into a new trial of lecanemab which is similar to my drug thats going to be used in folks who are prealzheimers

prealzheimers means that amyloid plaques are accumulating in the brain but its not severe enough to cause symptoms yet
this study will see if removing the amyloid plaque early will slow down or stop the disease

they are getting the new alzheimers blood test for amyloid and tau as the screening test to see if they may be prealzheimers
then
probably an amyloid pet scan will be done to verify the lab tests

i would have loved to have gotten into a study like this 15 years ago 
i might have been able if this drug works to prevent or slow down the disease

this is where alzheimers treatment is heading
treat folks before they get symptoms

its like taking cholesterol meds to prevent clogged arteries from causing heart attacks or stroke
it has to be used years before symptoms start

we may be at that point soon with alzheimers disease

im just hoping i started my aduhelm or aducanumab treatment in time

im glad its not be yet

the organicgreen doctor