yesterday as i was sitting in the lounge chair
getting infusion #2
now its real comfortable and cozy in there
theres a nice large screen tv
now
i havent watched it much
since
theres folks in and out of the room
nurses and the research director
talking and asking me questions
sticking in an iv
adjusting the flow rates
adding the unknown stuff thats all hidden under this
dark aluminum looking cover
its a secret i guess whats in there
now
i may know this time if i get those week long headaches again
if i dont get them
then i dont know either
for those who dont know
folks getting the aducanumab who have the apoe4 apoe4 genes
have a high chance of getting manageable headaches
i want headaches i tell everyone
as i sat there
i thought
please dont ask me
please dont start me talking about alzheimers
about clinical trials
since
i cant help myself
if you ask me
well
i go into lecture mode and probably tell you more than
you really want to know
now
i do adjust what i say based on who i am talking to
lay person vs medical person
yesterday it was the nurse who took care of me
he was asking about the medicine
i sort of ignored him
i thought
sir you are about to get told a lot more than you wanted to know
well
he asked again
just like a kid in kindergarten that cant help himself or herself
to answer the teachers question
i blurted it all out
told him the whole aducanumab story
you know he said we do other of these antibody infusions
for these diseases like ms and gastroenterology diseases and
ophthalmology diseases
some experimental some not
i dont think ive done any of these alzheimers one before
do you know about this one
no he said
my kindergarten brain and voice just let it roll out my mouth
well its an antibody against what i call the bad beta amyloid
that is thought to the cause of alzheimers disease
actually this drug may prove or disprove this theory
it removes all of it
yes i said all of it
in the phase 1 study
it removed all of it that showed on the pet brain scan for the
beta amyloid called the amyvid pet scan
zippo nada it was all gone after over a year
and
folks memory didnt worsen most got better
the goal of a good drug that works
so
in a year and half when they redo my amyvid pet scan
if i get the real drug aducanumab and not the placebo
my scan will go from being diffusely positive for all that
stuff
to
being all negative being like its all gone from up there
he just looked at me like
well i was lying or something
you arent telling me the truth
that aint so
he said
ive never heard of that before
he had this look of amazement in his face
i must say ive seen that amazement before
twice
from alzheimers research neurologists that i have seen
they added a sparkle and smile to their face
as they talked about it
so
now we wait
18 months
then all of us will get the real thing
for another 42 months after that
then
hopefully it will become available for all who
need it
hopefully that is if it really works
it will remove the stuff
and
memory gets better
and or
at least memory doesnt worsen
or
that downward slide that occurs with alzheimers disease
get slowed down stretched out so that
we who have it die from something else
enjoying a more memorable life along the way
as i say
my two goals
are
see my granddaughter graduate from high school
and
to be one of the first alzheimers disease survivors
looking at my alzheimers texas bracelet
i realized
there just might be some hope now
join us at this alzheimers symposium
i speak first about my story and clinical trials
and
answer questions the more the merrier
then 3 other speakers will follow
5TH ANNUAL ALZHEIMER'S SYMPOSIUM
friday april 28th
at
the mayborn convention center
temple texas
join us
its free
breakfast and lunch are provided
registration is required
just
click here
the organicgreen doctor
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