my story revisited #126-they are here now

MY STORY REVISITED #126-THEY ARE HERE NOW

when i wrote the blog below the alzheimers blood test were just starting to show up in the research world
now the more accurate tests are being used to screen folks for entry into the alzheimers treatment studies 

first
they do the alzheimers blood test
if its negative you arent accepted in the study

if its positive then they do a amyvid or amyloid pet scan 
if its positive 
then they enter you in the study

the blood test is highly accurate but the scans make the diagnosis even more likely

before they would use just the scans which are expensive
the blood tests are cheaper and are a good screening test
if the blood test is negative you are unlikely to have alzheimers disease

soon these alzheimers blood test will be available in your doctors office
so you can get tested if you want to know you have it

below i wrote they would be available in your doctors office in two years
now eight years later they are finally almost here

the question is when they arrive will the insurance pay for them

dont do the test if you arent sure you want to know

for me
im glad i know 
it did change my life though

yes i have had several of these alzheimers blood tests
however
i am not given the results since they are done in the research study 
i presume they are positive since im still in the study and my amyvid pet scan was positive

yesterday i got my 33rd infusion at ucla
the last 15 were the real drug aduhelm or aducanumab
the first 18 were placebo
__________
03-10-2014

ALZHEIMERS BLOOD TEST
many of you saw the news on tv and the internet
last night about the new alzheimers blood test
ive gotten several emails facebook messages and personal
questions about this

the researchers have found 10 lipids that are in the blood
that if you test positive for them you may now have a test with  90%
accuracy that you can tell you that you will get alzheimers disease

lipids that we know about and many of us get tested for annually
are in the lipid profile for cholesterol
looking for our ldl bad cholesterol good hdl cholesterol and triglyceride levels

the ten lipids in this alzheimers test are not those same lipids

the lipids alzheimers test may be available as soon as two years in
doctors offices

so you as a middle age person will be able to go in to your
doctor and get a blood test that says you may get alzheimers
with 90% accuracy

eg if you go to a doctor for a sorethroat and they swab your throat or
stick that stick up your nose that hurts so dam much
testing for strep throat and the flu
those tests are 90% accurate

every year when i make my trip to the alzheimers research center
at ut southwestern in dallas
i have a series of tests done
i am in three different studies

one the adni study i have neuropsych tests mri scans amyloid pet scans
and spinal tap analysis done
another study that i cant remember the official name of it
involves a large quantity of blood to be drawn
my wife she cant watch it being done
this is the trip where she got real woozy when we were talking
about doing my spinal tap

the blood is sent off for a lot of rna and dna analysis regular lab tests
but
in one of the studies they are testing things in the blood that
are associated with alzheimers
i think they are testing proteins and inflammatory markers in the blood
and in their preliminary studies it appears thats the test
will predict whether you will get alzheimers with
yes 90% accuracy

these results have been duplicated all over the world at different
research studies

so this published work yesterday that was on the news
didnt come as a surprise to me
since i knew these studies were ongoing
and already knew that the test was 90% accurate

the problem for me is yes again i dont get to see the results

if one of these tests becomes available at your local doctors office
soon
the question is
do you want it done
are you ready to know the answer

it does have a lot of implications for people
like for those folks who have huntington's disease
they are both fatal diseases
one your body gives out and your brain stays intact usually
the other your body stays mostly intact your brain gives out

not sure which is worse

once you are diagnosed
insurances like long term disability and life insurance are no longer
obtainable
luckily now with obamacare you can get health insurance
some jobs may not be available to you
eg airline pilot surgeon president air traffic controller
promotions may not happen
a stigma may get attached to you

i know sometimes i feel people look at me a lot differently since
ive been labelled

that doesnt bother me i just move on and keep talking about my
story and alzheimers disease

if you get tested in the future you mainly need to be able to handle
the diagnosis mentally
are you ready to know you have a fatal disease that for right now
there is no treatment available no cure

a disease that will move quickly or real slow
but commonly at the end it picks up speed in that downward slope
to death

i personally like the researcher interviewed for the news story
want to know
and i am glad i know

i think what it would be like not knowing right now
i eg have this urgency deep inside me that makes me have a drive
to do things and to appreciate things more than
if i didnt know

when i sit and talk with my wife she in the mornings in our nice
comfortable chairs looking over the sunrise me with my coffee
and she with her tea
or
in our hot tub listening to the birds the owls ahooting
the turkeys agobbling down by the river the roadrunner darting
across the front yard or the deer floating across our pastures
i have this deeper appreciation for the moment
that i might not have if i didnt know

seize the moment is our motto

then theres the preparation for the future thats so necessary for folks
so many put it off
i dont
i have time to slowly get it all in place so when that time comes
its all ready
so many people dont know they have it
it slips up on them and they are not ready
i am and will be ready

then i feel this urge to tell people about alzheimers disease
knowing that my days are limited to how long i will be
able to talk about it

i also have this knowledge about gardening and alzheimers and
being a patient and being a physician thats all mixed together
that will be lost in the future
i need to get the messages out as much as i can while i can

thats why i want to know
i want to know what my status is
do i have it
then if i do i accept it
and move forward with my life knowing what im up against

and you
would you want to know
will you

think about it
___________
so do you want to know

the organicgreen doctor