ALZHEIMERS NEWS-BUMMER WELL MAYBE NOT
last thursday
thats thanksgiving morning
i was sitting on the front porch where we were staying in nola
thats new orleans
i was drinking my strong morning coffee
since it may slow down alzheimers some
sitting in the morning sun on the cool morning
watching neighborhood folks walking by
some with their dogs
good morning i said
they return the same greeting
warm feeling inside and out i had
then
i started reading my news feed on my cellphone
there it was
solanezumab results are in
i got clammy sweaty i was
my heart rate jumped some
i knew what these results meant for those
with alzheimers disease and those who will get the disease
life changing
there was the word that seemed to hit me in the face
disappointing
the results showed that the drug use in mild alzheimers patients
was disappointing
i felt like i had been slapped upside the head
all the joy i had being in nola
went down the drain
i sat there for a long time
a long time
even let my coffee get cold
then
i felt real anxious anxiety it was
so
i went for a walk by myself in the neighborhood
nearby was a large cemetery
that stays locked at night
but lucky for me i guess the gate was open
so
inside i went
i just felt like i needed to be there
i slowly walked past the above the ground graves
looking at the dates
looking at when the person was born
when they died
wondering what they died from
some died young
some died old
some probably from trauma
some from probably infections
i wondered how many of them had dementia
had alzheimers disease
was it as bad back then
it when i think of it was strange that i was attracted to
that cemetery since i had toured it before
then
i gradually meandered my way back to our place
where we were staying
i felt melancholic all day
then
the next day i got a bad stomach bug
i think the drugs i took for the severe nausea masked
my melancholy
then
after a couple of days the melancholy gradually wore off
thanks
somewhat
as i read more and more about the drug study
and other similar ones
that are ongoing
one of them i am waiting to enter soon
there are 3 drugs called alzheimers vaccines
thats what i call them
they are antibodies against the bad amyloid that is thought to
cause alzheimers disease
they go into the brain and remove the beta amyloid
if it works the persons memory gets better
solanezumab
made by lilly
the first to publish results officially on december 8th
it will show when given to folks with mild alzheimers disease
it didnt work
the more i have read from alzheimers experts
i realize like them that the drug was given too late in the disease
its like giving lipitor a statin to someone with a stroke or
a heart attack
well it aint going to help them
but if given months to years earlier they wouldnt have a stroke or
heart attack
so
the thinking with these alzheimers vaccines
if its given before symptoms start
or
maybe given when
symptoms are minimal like the statin used in stroke prevention
then it might prevent alzheimers disease or at least slow it down
so
solanezumab is being used in a study called the a4 study
in folks who have no memory loss but who have
a positive amyvid pet scan for the bad beta amyloid in the brain
those results should be out in five or less years
crenezumab
made by genetech
its a similar drug that works the same
but is slightly different
it if you didnt see it was featured on
60 minutes last week
if you are remotely interested in a cure for alzheimers disease
click here to link the video and story
read and weep
i know my she and i both did
basically in the colombia study the drug is given to folks who have the dominant gene
for alzheimers disease but do not have symptoms yet
they all will get alzheimers disease
they will get the drug for 5 years then the results will be published
if it works it will delay or stop alzheimers from occurring
aducanumab
made by biogene
thats my drug
thats the drug study i have been trying to get in
it works similar but slightly different from the other two
it will be given as a monthly infusion for 4.5 years
to folks like me with minimal symptoms but with
positive memory tests positive spinal tap results positive apoe4 gene results
then
finally a positive amyvid pet scan
the scan that shows if you have the bad stuff beta amyloid
ie you are going to get full blown alzheimers
then
you will be given the drug monthly over the above time period
or
get the placebo
i passed the first test
a screening of my medical records my memory tests my apoe4 labs
my spinal tap results shows that i may qualify for the study
then
yesterday i was officially notified that i now will be started in
the screening process for the study
next
my wife she and i go back to dallas to the alzheimers research center
at ut southwestern
to get reinterviewed
to get memory tests required by the study
to get examined by the neurologist running the study there
to get a unit of blood for testing
so
if i pass those tests
then
its a spinal tap
an mri scan
then
if i pass those tests
then
its the anticipated amyvid pet scan
if its positive
which means i have alzheimers disease
then i am in
i would then start infusions monthly of an intravenous infusion of
antibodies against the bad beta amyloid for up to 4.5 years
i will get the drugs or i will like in the crenuzamab study
get the placebo
if i get the placebo in a couple of years i will then be given
the real deal the real drug or up to 2.5 years
by then
they may seek approval for it to be on the market
if it works
this drug in preliminary studies in phase 1 showed
not like the others
showed the bad beta amyloid was removed
and
showed on memory tests that folks memory got better
so i am hoping this stuff works
so my melancholy has been lifted this week
as some hope appears to be that this stuff may work
i have spent every day since last week
thinking a lot about what is happening and is going to happen to me
since i was diagnosed i have lost several people i know
to cancer stroke heart attacks accidents other neurology disease
but
i am still standing living my life as i want to
they
sadly
arent with us anymore
for that that i am still here with mostly intact memory
i am thankful
the organicgreen doctor
Sending admiration, hope and love.
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