this time about 9 years ago i got my diagnosis of mild cognitive impairment that since then has turned out to be due to alzheimers disease
i have had genetic tests that show i have apoe 4/apoe 4 which is known as the late onset alzheimers gene
i have positive biomarkers for alzheimers
ie
spinal fluid for tau and amyloid
amyvid pet scans for amyloid
both are positive
so that where i stand today
i have a more definitive diagnosis
i should be on a 5-15 year course of the downward curve of alzheimers disease
well
here i am 9 years later
normal memory tests now ie my mmse the one done in the aducanumab study is normal
my score is a 30 now
the average mmse score in the study subjects was 26.3
mine was about that or lower when i was diagnosed
my moca test a more sensitive memory test has been normal now also
initially it was not
so i sit here
normal memory
feel good
enjoying life
dont feel affected at all
taking my supplements
staying busy socially mentally physically
doing all those healthy things one needs to do
taking my aricept (donepezil) to slow the symptoms down
what else could i do
what if there was something out there that would not cure me but might lets say might slow it down
now
it might cause a little bleeding in the brain and some edema but i probably wouldnt notice it but it would go away
if there was symptoms they would be headache dizziness blurred vision but it would go away
well i could accept that i could deal with that
if there was some hope it might help
right now there is nothing like that thats out there that is even close to being available for me to access
there is nothing else for me to do
but
wait
what about that aducanumab
in march 2017 i started on the biogen aducanumab study
its an antibody that goes in and grabs the amyloid plaques and removes a lot of it from the brain
the true test is
does it make a persons memory better and therir activities of daily living called adl better
like driving cooking reading getting dressed remembering folks being able to work interacting ok with folks
you know
like those things that are important in ones life
i took the aducanumab infusions for 18 months
as it turned out those 18 months of monthly infusions were for me just plain ole saline
man was i big time bummed when i found that out
then
before they stopped the study
i started the long term extension part of the study where i got the real drug
i got a total of 7 treatments of the real drug with what i think at the end was the high dose aducanumab at 10 mg/kgm the dose they talk about in the studys results
then
after those 7 months it all stopped
bummer big time for the togd household
i can look at all the tables and diagrams in the presentations and project where my brains status is based on getting 7 doses of the high dose stuff
more please i say
now they plan to reactive the study
why
without getting too technical and getting lost in all the mumbo jumbo mix of scientific garbage
here is why
when they looked at folks who took the high dose of 10 mg/kgm of aducanumab for 18 months
here is what it showed
remember i was probably just starting that dose when i had to quit
there were a lot of folks who also hadnt reached that level yet
so there is a lot of data that will show up later if they restart it
in those folks
there was a lot of aria or bleeding and edema that resolved with minimal or no symptoms
ok
i can accept that happening to me
option otherwise is there is not one
the mmse memory test got significantly better in those folks
the adl scores or activity of daily living scores got better
ie what you see in your loved ones or self as symptoms got better and or did not worsen as much as those not treated
remember some of these folks the lucky ones have been on this for almost 5 years
i only got 7 doses
the amyvid pet scans for the amyloid showed a significant amount of the amyloid was removed from the brain
they also looked at the tau protein in the brain and noted that it also decreased
remember amyloid shows up first does its plaque damage then tau protein unwinds forming tangles in the brain
well
the amount of tau also decreased in folks
the spinal fluid levels of tau proteins abnormal in these folks also got better
watching q and a afterwards neurologists who actually cared for some of these folks noticed the improvement in their patients
just not seeing people decline functionally over this time period is significant
for us of those in the alzheimers world 2-5 years is a long time in alzheimers time
some folks can go from diagnosis to dying from alzheimers in 5 years
so
it seems to help
it makes the amyloid and tau start to go away
will it over time if its continued make it even better
maybe
remember
there eg for me is nothing else to do
i am lucky since hopefully in march i will be able to restart the aducanumab and probably take it long term
there are only 3000+ of us in the world that are going to be able to do this
i for one
consider myself quite the lucky one
and
i know that this one is the only hope left for slowing this down
so
for me
the aducanumab will do for me
here is the presentation by biogen
if you arent scientifically oriented you may get lost watching it
you have to type in your email then on the next page add your name and affiliation
i just wrote in self
you will also verify your email
here are a couple of articles on it that may be easier to interpret
quartz article
being patient article
wall street journal article may require subscription or payment for article
their articles on this subject are usually good ones
now
i dont listen to the naysayers
but
they arent looking at it through my glasses my and others viewpoints
this is our hope
we dont have another choice right now
they might when their time comes
there is a beacon of light at the end of the tunnel for us and we want to reach out and grab it
yes
i think the fda will approve it eventually
i dont see how they can refuse to do it
there will be a lot of pressure on them to do it
it will be available but will be expensive
is the price worth it
we as a society will have to decide
for me
for us
it is
hope is priceless
the organicgreen doctor
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