my story #178-then and now

MY STORY #178-THEN AND NOW

these pictures above are of amyloid pet scans of the brain form the phase 1 aducanumab study from nature
on the left is the scans when the study was started
on the right is the scans 1 year after treatment

that red stuff is amyloid 
the first one on the right is a placebo patient after one year
i was a placebo patient after 18 months
my amyloid pet scan probably looked like this after those 18 monthly infusions of saline
it would be full of the red stuff

then i got the real drug 
so far i have had #30 aducanumab or aduhelm infusions
my amyloid pet scan i will be getting in two weeks should look like the 10 mg/kgm  one
ie there should be no red stuff showing up

below i wrote a blog to ms b my granddaughter of around 3 at that time 

i wrote 
ms b look over at that chair 
if this stuff works then i will be sitting in that chair when you can read this
if it doesnt work then that chair will be empty

well 6 years later today as she reads this it looks like that chair has me sitting in it

__________
02-28-2017
DEAR MS B-TODAYS IT

now ms b
i hope when you read this
well my guess is that you will probably be around 10-15 years old
when you first read this
as you sit on the couch with your laptop or your whatever is being
used then
as you read this blog today
i hope you will be able to look over at the easy chair in your
living room
there sitting in that easy chair will be me
ill look at you
smile
ill understand
i we made it

you see ms b
i have or may have alzheimers disease
i hope by the time you read this
you will know a lot about the disease
we should have a good treatment or maybe a cure
when you read this

today ms b
your gma and i make the drive up to ut southwestern in dallas
a 3.5 hour drive
i drive up there
your gma drives home

today we are going there to get a scan
called the amyvid pet scan
its a scan that will show the beta amyloid if its there
hopefully you will know a lot about this disease and
will understand what this means

a quick summary
i have a strong family history of alzheimers disease
i have a gene apoe 4 that puts me at risk for getting alzheimers disease
i have abnormal levels of beta amyloid and tau protein in my
spinal fluid which is associated with alzheimers disease
i had a normal memory tests 8 years ago then 3 years later
it was abnormal

so i probably have alzheimers disease
i take medicine called aricept donepezil for it
i am aggressively doing healthy things to help
but
i need one more thing
i need the final picture the final piece of the puzzle
the amyvid pet scan for the beta amyloid

if its positive
well i got it that alzheimers disease

the good thing though is that if this thing is positive
like i expect it to be
then i qualify for the aducanumab study

i then will receive monthly infusions that has a chance to slow it down
or
if we are lucky stop it in its tracks

so ms b
todays important to us

so ms b
as you read this look over at the chair
if its empty
this stuff didnt work
but
if i am sitting over there smiling at you
well
then
this stuff worked
__________
 yesterday i had a tau pet scan at ucla
i was there for about 5 hours
i have had 3 of these 
i have one more to go next year at this time in this study

if i could see it i could tell where the alzheimers was active in my brain allowing me to predict where my symptoms would show up first

next week i have a day long of memory testing and neurological exams and end the day with a mri of the brain

looking back i feel like it was a good decision to be in this study

this week i can sit in ms b and mr hs living room and they will look over and ill be there

the organicgreen doctor