alzheimers news-the alzheimers week that was

ALZHEIMERS WEEK-THE ALZHEIMERS WEEK THAT WAS

it started with our santa barbara walk to end alzheimers last saturday
i was doing ok helping set up the walk
since i am on the committee for the walk this year

now
i was doing ok
until i had to get up and talk for a few minutes
since they asked me to carry the blue flower
the blue flower represents those of us who have alzheimers

now
ive got up and talked before a lot of these walks
like this
in fact i pretty much say the same things each time

this time
as i stood on the stage
looking out over the crowd of close to 500 folks
my granddaughter looked up at me
i could see her pretty little face with this look on it
granddaddy she said out loud
what are you doing up there

well
that was when the dam broke
on my tears
which flowed all the way through my two minute talk
it flowed from me to the audience to the other speakers
to the two emcees

i managed to get through it
barely

i guess folks will remember me talking after all that

then
this week was our ucla trip
to get my infusion #9 of the experimental drug aducanumab
that hopefully will slow the disease down some

for these trips
its only 90 miles
but its into the beast of the 405 in la
a drive that can take 2 hours or 3 1/2 hours
sorry
but this day we got the long version

we leave while its dark
after about an hour we start hitting the beast of the 405

the last 15 miles takes longer than the first 85 miles

so we eventually get there
i get settled into my bed i have to lay on

they start my iv

then
draw all this blood work
then
i see the neurologist
then
i wait for the pharmacy to mix it all up
the pharmacy knows what im getting
no one else does

i always tell them
please dont give me that placebo one
on you know you got the real one the nurse says
she says that to everyone i bet

then
they hook me up to the iv
it takes an hour to run in
i feel nothing but a salty taste in my mouth
after an hour they flush it with saline
then
im out of there 3 hours after it starts

my wife she says as she sees me
you know
your face is always real flushed when you finish
those infusions
yes
i said
any side effect i can get is a good one

i have somewhere around 50 +- more of these to get
hopefully a lot more

then
yesterday the biogen folks presented the results of
their phase 1a study that had been extended for two years
on around 150 folks

this phase 1a study was the one that looked promising
the fda allowed it to get fast tracked to phase 3 studies
so if it helps it can reach the market quicker
the phase 3 study is the one i am in now

this phase 1 study when they extended it these two years
is pretty much like the study i am in

so those folks some of them have been taking the aducanumab
now for 3 years
so these results give us a glimpse into whether this stuff will work

basically in layman terms
my terms that is

the 10 mgm dose worked the best but also had more side effects
so in my study they only are using the 3 mgm and 6 mgm dose
so if i am not getting placebo then i am on one of these doses
when my phase 3 study gets extended in 15 months
i will definitely be on one of these doses

here is what they found in layman terms
after 3 years the aducanumab removed enough of the beta amyloid
from the brain so that the amyvid pet scan for the amyloid
 are now mostly negative
or close to negative on the lower doses

now
the big determinant of whether this works is
does the memory get better or does its decline slow down

now this is my interpretation of listening to the webcast of the presentation
and reading articles on the results

none of the doses stopped the decline in the memory based on
two memory tests one being the mmse
but
the high dose the 10 mgm
slowed the decline of the memory significantly compared to the
decline seen in the folks who got the placebo
the 3mg and 6 mgm also slowed the decline in memory
but not as much as the 10 mgm
lets just say it did it half as much

so
in alzheimers years
3 years can be a long long time
and any slowing of the mental decline over the 3 years
i know any family member would take that

compare that to aricept (donepezil) the alzheimers drug most folks
get put on at first
there is no comparison to the aducanumab

so
my laymans impression
it removes the bad stuff the amyloid from the brain
by doing so the aducanumab slows down the memory loss
enough that if it does this it will be used in the future to
treat someone with early alzheimers

also
my impression is even though the amyloid is removed
there is destruction and some disease process thats going on
that has already started snowballing and may not be stopped
that may be why the memory decline isnt stopped completely
but
man i would take this stuff knowing that
it could give me extra time with my family
time that i would remember also while its happening

just think
if your loved one could have gotten something like this
they might have
made a wedding
maade an anniversary
seen a graduation
seen a birth

yes
i think it would have been worth it


if you havent donated to a walk to end alzheimers
consider donating to my younger brothers familys
team for tomorrows little rock walk to end alzheimers

here is the link
#joe nash

i was thinking just now
what if he could have gotten this medicine early on
what things would he have not missed in his familys life

the organicgreen doctor