alzheimers news-it could be worse

ALZHEIMERS NEWS-IT COULD BE WORSE

my wife she and i were talking this week
during our drive back from ucla
where i received my 7th infusion
of biogen aducanumab that could if it works
slow down the disease or prevent it from advancing

i had a lot of time to myself that day
sitting in the infusion room
watching that stuff
drip slowly into my vein

i thought
about my brother who died with the disease
about
my mom who died with the disease
what if this stuff had been available for them
would it have made a difference
why did this stuff show up now 10 years too late
for them
maybe even 10 years too late for me
time will tell

i thought about my friend who died with huntingtons
since i was diagnosed
here i am
writing driving volunteering enjoying my family
enjoying the beauty of this area
and
he is gone

i thought about classmates who are no longer with us
having died from heart attacks strokes cancer other diseases
interesting is i never see alzheimers as the reason they die
here i am
still enjoying things after 7 years
they are gone

i really thought about an acquaintance who just had
surgery at ucla this day for a metastatic skin lesion
from the head to the neck
after my infusion i went up to visit him
thinking
here i am sitting here
all healthy and feeling good
then
there he is with bandages all over and a drain tube hanging
out his neck
he is all in good spirits
having a bright outlook on things
making you feel good
seeing him after all he had done that day
seeing him in such good spirits
his prognosis just got better it seems

so i sat there thinking
you know
like him
i have a bright outlook on things
i am happy with where i am at
i realize that i am lucky
to have been there that day
to get my infusion meet the neurologist
knowing that i am all maxed out on what i can do
like he is

my long term prognosis isnt good
if this stuff doesnt work
but that could be several years away

so
i sat there thinking
i am one lucky guy

there is some hope for him and for me
for the future



the williamson county alzheimers texas walk is at the san gabriel
park in georgetown texas on saturday september 23rd
my wife she and i will be there for the walk

here is the link to the walk
here is the link to my team organicgreendoctor

please donate and or walk with us that day

we will also be doing the walk to end alzheimers in santa barbara
on saturday october 28th at the fess parker doubletree resort
here is the link to the walk
here is the link to my team organicgreendoctor.com

we need your support
to find a cure

the organicgreen doctor

alzheimers news-scan it

ALZHEIMERS NEWS-SCAN IT

today we head down to ucla
to the alzheimers center there
as i enter the 22nd week of the aducanumab study sponsored
by biogen

for those who dont know
the aducanumab is a monoclonal antibody against the
what i call
the bad beta amyloid that accumulates in the brain as
alzheimers disease progresses
causing brain cell death and initiating that snowball happening
that leads to more and more and faster and faster
rolling down that downward decline
that we call the progression of the disease

as the aducanumab binds that bad amyloid
it removes it from the spinal fluid
it also binds to the plaques as they have formed in the brain

in my case
if i am not getting the placebo
knowing my results of my initial amyloid pet scan
its spread over the brain

as it binds to the bad stuff
as it peels it off
it can be like a scab on a wound
there can be some oozing of blood that occurs

this event
can cause headaches and other symptoms
it also if it shows up on scans
gets you removed from the study

those at high risk for this to happen
are those who carry the apoe 4 apoe 4 gene
and
that would be me

i had headaches after the first infusion
but
have not really had any since then

there is just fatique a week after the infusion
i am in that period of time now
its easily helped with a short afternoon nap

as i wrote in this blog about vertigo
that i had
i thought about that this morning as i awoke
i wonder if that episode of vertigo had anything to do with all this
i hope not
since as i head down today for my mri of the brain
i
dont
want
them
to find anything on that scan
if they do
thats it for this study

so we are in the prime time for these bleeds to occur
called aria
amyloid related imaging abnormalities
this will be my third mri for this study
the last two have been normal

how do i know
since they dont give me the results

if its positive for anything i am not allowed to continue
this study

the thinking is that if when this stuff gets on the market
if it works
that even small bleeds will not one day prevent you from
continuing the treatments
but
for this study they have to be discontinued

i personally would not discontinue it if these occur
especially if there is nothing else out there available
to help slow down the disease

also
i will have blood drawn today
the blood is usually tested for the level of the antibody in the body
that is still present since the infusion
and
also it tests to be sure my body isnt making an antibody to destroy
the aducanumab
which would prevent the aducanumab from doing its job

next  up
in two weeks its infusion #7
we will be one year away from the end of the first segment
of the aducanumab study
thats when if this stuff seems to be working
and
if there arent too many side effects
then
all in the study even those getting the placebo
will be getting the drug aducanumab
for another 3+ years

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 docotr

alzheimers news-in memoriam

ALZHEIMERS NEWS-IN MEMORIAM

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

so i went down to the infusion center
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