happy anniversary

HAPPY ANNIVERSARY


today is my anniversary
its the two year one
the two year followup visit to the alzheimers research center
at the university of texas southwestern medical school in dallas
for the alzhiemers disease neuroimaging initiative study
the adni study

i now get to repeat all of the studies that i had done when i
originally started the study
they will be spread over 3 days over the next 10 days
which means i have to drive to dallas three times
the good part is i get to stop at the czech stop bakery 6 times
over that time period
and of course from a distance see the destruction done by the
west fertilizer factory explosion
my thoughts with the people of that town
but they are a tough resilient town that will recover eventually
but will always remember that day

today
i have the sucky test
the one that of all the ones i have done
the one that i dread the most
the neuropsychological examination
with those 10 words from 3 different word categories that i
despite how much i try i cant seem to remember them all as
they seem to just pass on through my brain to some abyss and
they stay there
there are several other portions that measure short term memory
all of which i have some problems with

although i never get to see a final report
i know after i take it exactly where i am
whether or not ive gotten worse or stayed the same
it seems getting better on these tests
dont seem to be an option

i have in the last 2 1/2 years taken 7 of these 2 1/2 hour exams so
i know whats coming and know that its frustrating not to be able
to get things correct
i call it the torture test
give me the spinal tap anytime
well except that my wife she doesnt faint with the neuropsychology test

then i have a neurology visit to look at my medications and how
im doing
today i will discuss with the neurologist the fact that i have in hand
a xray request for a amyvid pet scan that i will have done in may
here in austin
i feel like that test will tell me as close as possible as to whether i
really have alzheimers disease or not
when you take all of my tests and history and then add the amyvid pet scan
for beta amyloid in the brain
ill feel like ill know
the only 100% way to know for sure is a brain autopsy
which will happen eventually as ive signed the papers to have that done
when i die

then later today i will have the amyvid pet scan
the beta amyloid pet scan of the brain
where they give me an iv with a substance it it that will bind itself
to the beta amyloid in the brain
the hallmark of alzheimers disease

i will not get to see the result of this amyvid pet scan today
but feel like it will be positive

sometimes i think about the ethics of my not getting to know the
results of this test and i know that part of the deal signing up with this
study was that i would not get the results of any of the tests unless
something abnormal was found like a brain tumor or some treatable
disease that i needed to know about

it seems that after being in this study for two years now
reading a lot about alzheimers and giving talks on alzhiemers
that having a positive beta amyloid pet scan and not letting me
know about it is the same as them finding some other disease
like a tumor or mass or normal pressure hydrocephalus or
anuerysm etc

i wouldnt ever get out of the study though as that is what happens
if they have to let you know the results
as
i am able to duplicate these studies in the private world
at i might add some expense
eg $3000-$6000 for the amyvid pet scan next month
which i will be able to afford to do
its important to my psyche to know the result now
and not to have just my family know for sure after i die
when they do my brain autopsy

tomorrow i will let you know how the day went

the organicgreen doctor