my story revisited #137-now its ?35 down and ? to go

MY STORY REVISITED #137-NOW ITS ?35 DOWN AND ? TO GO

like i did 5 years ago when i had my first infusion of aducanumab in the biogen clinical study of aducanumab at the university of texas southwestern in dallas
that first day i left our country n on my way to the infusion
yesterday i left our condo in santa barbara at 530am and made the beautiful 3 hour trip to ucla to get my ive lost count but its around 35th infusion in this study

luckily the drive is a beautiful one at that time of morning as the sun starts to come up


at ucla where i now get my infusions i usually go for a short walk around the area before i have to go into the building for my infusion
i got in close to 3000 steps before i went inside
i feel better doing that walk before i get tied down to my iv


today i had to have a full neurological exam since its been a year since i restarted the study 
then
they drew out 7 vials of blood for various tests


once im cleared by the neurologist to receive the medicine aduhelm or aducanumab
it is ordered 
i then wait usually up to an hour before the medicine arrives to my bedside

the infusion then starts and last about 60 minutes
i get a salty taste in my mouth since its got saline mixed with the aduhelm or aducanumab

in the picture below of the iv hanging the bag has no name of the drug on it
since that part of the study we werent allow to know what it was
placebo or aduhelm or aducanumab
i can know tell you it was placebo
i got 18 of those placebos

i got 7 real drug aduhelm or aducanumab after that before the study was stopped in 2019

since it was restarted in 2021 i think i have gotten around 10 more infusions of the real drug

so i have gotten around 17 real drug infusions so far

today the label has my name on it
it has the name aduhelm or a aducanumab at a 10 mg/kg dose
the maximum dose given 
its the one that works the best
but
its the one that also has the most side effects
the biggest side effect as ive written before is microbleeds

ive had no microbleeds so far 
they do mris to check for these
my multiple mris are negative
i have 2 more scheduled this summer

im sure my brain is electromagnetized by now

next week i have a tau protein pet scan and the following week i have a 6 hour day of memory testing et

if it works its all worth

as i went through the day 5 years ago i remember being quite excited to start the study infusions
i was the first to get them at ut southwestern in dallas

a few months later i transferred to ucla for my infusions after moving to santa barbara
___________

03-24-2017
ALZHEIMERS NEWS-1 DOWN 47 TO GO
i did it yesterday
got my birthday present
as i wrote the best ever

as i drove the 3 hours trip i did a lot of contemplating
thinking about this 6 year long journey that i have been on
hoping it will last a long long time before its all over

i thought how lucky i am to be this far along
and not have worsening memory loss

during that time this last 6 years
i lost my brother from the final stages of this disease
had my older brother get diagnosed with it

i thought maybe just maybe i am the lucky one
getting an opportunity that they didnt get
to really really slow this down

i am honored to be in this trial
knowing that if its successful as it might be
that it could be a game changer for me
and all my relatives behind me
to have a chance to avoid this awful disease

thats how close we are to finding a treatment
its right now today not off tens of years from now
for me and my family it started yesterday

yesterday the day for the rest of our lives

lets getter on is what i muttered under my breath

i arrived yesterday early of course to the infusion center
its located in this building at the university of texas southwestern
medical center

i walked up to this desk where the busy infusion center is
there sits this guy called santa claus
he is the receptionist
everyone calls him that
since he looks like santa claus
and
plays one at christmas
nice as you would expect santa claus to be
nice first person to interact with

then there was some snafu
we may have to reschedule
some protocol has to followed exactly right
i was the first one starting this study there
some special approval had to done by some god in massachusetts
or somewhere back east at biogen

we may need to reschedule if you dont want to wait
nope i said
im staying until this gets settled
ive waited too long and this may mean to much to me and my family
i just want to get this thing done
getter done i mumbled under my breath

finally after awhile it all got cleared up

back i went
nice nurse
nice receptionist
nice neurologist
it helps to have nice medical personal taking care of you
when you are dealing with the unknown
dealing with a terminal illness

i remembered as i watched them start my infusion and draw my blood
their patients are the ones that dont usually fair well
its their diagnoses

below thats the brown bag stuff hanging on the pole
the stuff thats either fake stuff or the real deal
the real deal for me please

me
i thought as i watched them hook all this up
i want to be the exception for them
i want to be a success result

the only thing i noticed as i got my infusion was
that i tasted salt on my tongue and i got real thirsty
dont know if thats a good sign or not
when it comes to whether or not i am in the placebo group
or not

if i get headaches get confused have some dizziness
then theres a good chance i got the real deal stuff
however not everyone has side effects
i am at higher risk for side effects since i have the apoe 4/apoe 4 gene
this gene put me at an increased risk for getting alzheimers disease

prior to getting the infusion i had a memory test done
for some reason i noticed that i did better on it than usual
it may be because i have had it done so much
i can anticipate the answers before they ask the questions
however
they for this study do a variety of memory tests
most of which i havent done before
which make them more accurate

so
i finished my infusion without any effects
now
i return each month to do the same thing all over again
except
i dont have to wait around the extra hour or so like i did
this time
in and out in an hour or so each time

i decided i can deal with whatever problems pop up
for
in the end it may be all worth it

i scheduled my next infusion date on 4/20
i did that date on purpose
its in case you dont know is marijuana day

why pick that day
well
there is a lot of research that needs to be done on the ingredients
in marijuana
they appear to be useful in the treatment of neurological diseases
like alzheimers
however
the federal government severely limits the research that needs to
be done on these marijuana ingredients

in my contact with folks affected by these diseases
they are using marijuana
obtaining it from states where its legal
using strands that have the potential to help

its sad that good scientific research cant be done
to find things like this that may help

its my small way of protesting our governments restrictions
on this research

but
hopefully if this aducanumab stuff works for me
i wont have to get involved with using any 420 stuff

next
a month of waiting
then
round two

keep following me on this journey
i am hoping the end result will be a good one
if it is
there may be hope for a lot of people
__________
was all the effort it has taken to be in this study worth it
all those ivs
all those blood draws
all those neurology exams
all those memory tests
all those mris and amyloid pet scans and tau pet scans
all those 3 hour drives one way

would you do it again

my answer to both questions
you betcha

the organicgreen doctor