my story revisited #181-why i cried all though still alice

MY STORY REVISTED #181-WHY I CRIED ALL THROUGH STILL ALICE

still alice is a movie and book about a women who developed alzheimers disease
juleanne moore won an academy award oscar for best actress
i only saw it once with my experience described below
i dont want to watch it again

in 2015 i had finished the adni 2 study and was looking at treatment clinical trials
i was looking closely at the upcoming clinical trial of aducanumab which i was able to get accepted into the study the following year

now 8 years later i really didnt expect to be doing as well as i am doing now

this movie made me do a lot of thinking that week
as it probably did others

once i was diagnosed in 2010 i decided i would freely talk and write about my experiences
hopefully this will help others to do the same


later this week i will have another infusion of aduhelm at ucla
i have 10 more after that
then
i will wait until its decided by neurologists that i need to do a maintenance dosing of one of the antiamyloid drugs

i will probably chose either leqembi or donanemab since they work probably faster removing the amyloid than aduhelm does
__________
02-23-2022
WHY STILL ALICE BOTHERED ME SO MUCH
this weekend my wife she and i went to a special showing
of the still alice movie at the alamo drafthouse on south lamar
that was sponsored by the alzheimers association

a local neurologist the director of the alzheimers association
and i answered questions from the audience for over 30 minutes
afterwards
well i almost didnt make it through it all

what is the matter with me
i thought
as i started watching the movie
i figured i would tear up some
but
i started when the movie started
and
it never stopped all the way through the  movie

i thought theres no way im going to be able to make it through
that movie
then
get up in front of all those folks
and
answer questions about alzheimers disease
heck
i barely at times could see the screen for all the tears

i made my way to the front of the auditorium afterwards
still a little bleary eyed
started my 2 minute introduction
but
when i started talking about my mother my brother my dad
my older brother who fought and whose fighting the disease
i had to stop
and
discontinue talking

lets move on was said to some questions
i took a deep breath
thought i have to do this for them and myself
and
for those other people who wanted some answers
so
i sucked it up
finished my introduction
fielded the first question from a local newspaper reporter
and
did ok the rest of the way

i thought about all this later on my way home
why did it bother me so much to watch that movie
and
to get up and talk about my family and dealing with alzheimers

ive done it numerous times at multiple locations to groups of
all sizes without problems
granted
the first one i ever did after my diagnosis was to about 50 of
my fellow family practice doctors where i use to practice
the same thing happened
it was the first i had seen most of them after i had left there
a year before
i regained my composure then like i did this weekend
and
finished my presentation and fielded their questions

i realized that i had been thinking about my mother all week
and
about her fight with the disease
and
she would have been 93 on saturday
had she lived
had alzheimers not taken her away
almost exactly 8 years ago

seeing the movie
and
seeing those events still alice was experiencing
seeing her family and its dynamics
some accepting it some not
seeing her downfall
brought back strong memories
none of them good
wonder if flashbacks are like this
then
i thought a lot about my younger brother this week
since he had early onset alzheimers like still alice
now he didnt have the dominant gene kind like still alice did
but that doesnt really matter
since
the course and end result is all the same

then i thought about my older brother
just diagnosed over a  month ago
what he must be thinking
what he would feel if he watched this movie
its like a cancer diagnosis with no cure but maybe
a lot slower before it does its job

then
so much in the movie triggered things as i watched it
the memory test
brought back the memory of
sitting in the examiners office at the alzheimers center in dallas
being asked to name what those pictures were
five of the things i sat there staring like she did
knowing i knew what they were
but the words werent there for me to reach out
and grab to answer her questions

thats a you know that bird that flies on the beach and
eats fish
you know that thing you sit in on our deck
my wife she sits in it when she grades papers sometimes
i joke that if she grades in that thing they always get as

there were  more of those that day
and
i remember getting that stare
that sinking feeling she had that she showed on the screen
i remember feeling hot and sweaty
knowing what i knew about things
that
my moment had arrived
it changed my life and my familys life that day over four years ago

so thats why as i started watching the movie
i instantly teared up and didnt really clear up
until after i started answering questions

flashback and flashbacks were the answer i guess

so
i feel like all that was cathartic
even though i wasnt sure at the time
im glad i watched the movie
and
answered your questions

by the way so should you
watch the movie

i persevered to finish what i started that day
and
am feeling somewhat refreshed now
ready to move on
as
we all continue the fight against this terrible disease
alzheimers disease

congratulations to julianne moore for winning the oscar
there was no doubt that she would win

you and your older kids need to see it
just bring tissues
__________
it was hard to get up in front of that full movie theater and talk about my family and myself
but
i did it
i would hope more families and patients would do the same

talking about alzheimers is therapeutic

the organicgreen doctor