i thought about these two guys a lot last week
both were from arkansas
one was my brother joe who died 4 years ago
in the final stages of alzheimers disease
here is the blog i wrote about him after his death
he was the mirror i looked into
as
i saw myself
knowing that this is where i will be sometime in
the future
when i dont know
im doing what i can to slow it down
here is the blog
THE SMILE
the other person
also had that same smile
it was glen campbell
who died last week in that final stage of alzheimers disease
now i have read some criticism of his family
sending him on his tours
when he struggled so much at times trying to remember his lines
however
he was doing what he loved to do
he was able to do it longer than most would have
may he rip
when you get to that final stage of this disease
death brings peacefulness
to the person
and
their family
hopefully they are at peace
this last week i had my first visit at ucla
the worse part was the traffic
its like worse than than the worse austin traffic
i had to undergo reevaluation and reintroduction to
the aducanumab study
i am able to just pick up where i left off at ut southwestern
i am about the fifth one in the aducanumab study by
biogen here at ucla
i chose ucla instead of a private neurology group
since i wanted the connections to a research facility
in case i need to be in other studies in the future
i have found it makes a difference knowing the folks
and
knowing what new stuff is out there
when it happens
it will be happening here at ucla
they have the mary easton alzheimers disease center here
that does the different research
eg they are also doing one of the bace inhibitor studies
that will probably benefit folks who have no symptoms
they could be used like the statin drugs are being used
to prevent stroke and heart attacks
these bace inhibitors may help slow down or prevent alzheimers
time will tell on that one
the aducanumab study that i am in
has more promise for us with symptoms
although if it works it will probably be given
with the bace inhibitor before folks
develop symptoms
got all hooked up again
took my two hours it took to get all set up
and
get in my infusion #6
then out the door into the throngs of the traffic
12 more to go until they put everyone
placebo and real drug on the real drug for another 3 years
then soon after we will find out if this study really works
next
more blood work and an mri of the brain at ucla in two weeks
so far
i have just some daily fatigue i experience
thats hard to separate whether its the infusions
or my aricept (donepezil) or my sleep issues or my chronic iritis
i am hoping its my infusions
since that would mean i got the real deal stuff
and
not the placebo
time will tell
i also volunteered for a substudy of this one
which does extra amyvid pet scans for the
bad stuff beta amyloid
to see if it really all got cleared out after a year
that is
if i got the real stuff
however i will never know if i got the real stuff
this first 18 months
thats part of the deal
they will know but i wont
remember
we need financial support to fight this disease
and
emotional support to deal with it
join us as we walk this year
we will be doing the
alzheimers texas walk in georgetown texas
on saturday september 23rd
team name is organicgreendoctor
yes we will be in georgetown for the above walk
as we walk with our austin friends and family
do join us
come say goodbye to us
i also will have a team in the
santa barbara walk to end alzheimers
on saturday october 28th
team name is organicgreendoctor.com
join us
the organicgreen doctor
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