my story revisited #149-i moved on to the next phase

MY STORY REVISITED #149-I MOVED ON TO THE NEXT PHASE

when i wrote this blog below i was in the last year of the adni 2 or alzheimers neuroimaging initiative study
there was no funding to extend the study thanks to budget cuts at the federal level
its since been refunded and is active as the adni 3 study which added tau pet scans to the tests

this was an inflection point for me
i wanted to find a treatment study as the adni 2 study was only diagnostic tests like labs spinal fluid memory testing mri amyloid pet scans
i turned down a chance to be in the adni 3 study
the solanezumab studies and the bace inhibitor studies and the nasal insulin studies were cranking up
none paned out though at that time
the nasal insulin study is just now starting up 8 years later

i found and set my sites on the aducanumab studies which looked promising
its now approved for use in early alzheimers but is limited in its insurance coverage

i will be getting my full aducanumab or aduhelm infusion #21 next tuesday

as ive written before my memory is now normal
my moca test is scoring at 30 as is my mmse
they were lower when i wrote this blog below

studies are being done on aducanumab or aduhelm that are long term that should show how effective this drug is

its a gamble i took back then
that may or not pay off for me
i wont know for a few years if it worked
if i am writing this blog in 8 years from now then you know it worked
__________
08-13-2014
THERE YOUVE DONE IT AGAIN
thats what i said yesterday as i finished the last part of the exam
im done for another year
maybe

huffingtonpost.com

we are at a crossroads now
in alzheimers research
we now have collected information for several years on folks
like me
eg in the adni study alzheimers disease neuroimaging initiative
we know how to identify folks early with testing to know with
a certain degree of certainty that alzheimers is present
now
its time to move to the next phase
lets treat it slow it down or cure it

i am in the fourth year of the adni study
the hope was it would be continued so that these
folks like me could be followed long term
but
no the funding has not been made available
thank you so much mr or ms congressperson for stopping
us in our tracks
youve done a lot for our country the last few years

not

so ill still be followed by the research center but in less detail
since the funding isnt there
so yesterday i started this new journey
still an adequate one but not one that had as much national significance

i am also still in the study where they are developing a new alzheimers
blood test as evidenced by all that blood they withdrew from my
arm yesterday
my wife she didnt faint but she didnt watch either
sometime in the future they will do this  blood test on you and be
able to tell if you will get or have alzheimers disease
they already know the answer on me

i still have the annual mental status evaluations
thats the one that really tells me where i am

theres the mmse 
a commonly used in the office test thats quick and easy
it will show if you are more advanced
you flunk this one and you definitely have a problem
i get all of it correct
not a helpful test for the future as we will be looking for people who
have minimal symptoms or none at all
 
then the moca test
this one will pick up abnormalities earlier than the mmse
eg theres part of the test i have trouble with and i did again
yesterday so that my score for that test is off slightly
if it was in a doctors office they would send me for the neuropsych
test to better delineate my problem

then theres the full blown neuropsych test that really really tells
you where you are
it will tell if you have memory loss and if its short term or not
thats the hallmark of alzheimers disease
and im sorry to say thats where my deficit is in my short term memory
its still there maybe the same but probably slightly more advanced
most  people will not notice it in me
but i do and i have already developed some coping mechanisms
to help out

so here i am tested
know where i am
now wtf am i going to do now

stay active physically mentally and socially
check on that
control my weight blood pressure cholesterol
check on that
take my aricept (donepezil) the only medication that really at this
stage may help
check on that

now im at that crossroad
im sorry but i want more
i am doing all i can but i want more

research is now entering in that phase
where medications are developed that show promise
and
i want to be part of finding out if that stuff is going to work

the three promising ones are
the alzheimers vaccine solanezumab
being used in several studies now and in the next year

bace inhibitors will be used soon in new studies
it prevents the body from making beta amyloid the bad stuff

nasal insulin will be used in new studies soon
it will help by increasing glucose to the brain cells in the
hypothalamus where alzheimers starts
hopefully it will slow things down some

then there are lots of others in the works

so alzheimers research is at a turning point
i am at that peak with them
i dont want to fall off now
i want to go along for the ride
__________
yep
i hope im writing this blog in 8 years


you can join and or donate to our organicgreendoctor walk team for the santa barbara walk to end alzheimers on saturday november 5th

this is our 12th year to do the alzheimers walks

help us find a treatment or cure for this terrible disease

the organicgreen doctor