deja vu

DEJA VU
thats what it was like yesterday
deja vu

i walked into that room with the window
the same room for those of you that have seen the video
on my story with alzheimers disease that i am sitting in when
they filmed me doing part of my neuropsychological exam
and there was that window where i looked out of when
that stone faced poker faced examiner read those words to me

she is such a good one as she never breaks down
well i did get her to smile once and granted now that she
knows me she smiles more than once when im being tested

but there was that room
it was it seemed more surreal than before
i guess since ive being working on my presentation and have
thought more about the neuropsychological testing and that
initial one that was done
when i looked out that window
yes i did sweat some
as i realized that the moment arrived when i had developed
some problems with my short term memory

as i wrote yesterday she read me those 10 words from three
different word categories the first time i was tested and
those words just sailed through my brain and went somewhere else

you know like when you talk to your kids and they arent listening
sure mom ill do it
they didnt hear a word you said
or
you talk to your wife she while she is on her smartphone
she smiles and says sure
so i said
the cat ate the dog and laid 3 red eggs today
really thats good
she didnt hear a word i said

the same yesterday
that poker faced examiner (ok now she is a nice smiley person when
she is out of character)
im going to read you ten words and when i finish i want you to repeat
as many words as you can back to me
i said ok
im ready this time
she gives me a word and i try to associate some of them together
go
she slowly reads the list to me
i start associating words together
damn where did those first words go to
i learned quickly to repeat back the last words read to me

my score 3 of 10
i know thats not very good
but she does it several times and has me identify the 10 words out of
a list of about 30 words
i wonder if thats cheating
i got a few more
but i realize
no ive not improved in 2 1/2 years but ive not gotten worse

damn that room

then after that test i went to get my beta amyloid pet scan of the brain
the amyvid pet scan
the one that for me may give me the final answer

as i was laying on the table wanting for them to get the iv stuff ready
i was on my smartphone looking at a link my wife she sent me
it was a blog that a doctor in washington dc does about his journey
with a new diagnosis of mild cognitive impairment amnestic type thats
looking like its early alzheimers
story sounds familiar right

he is laying on a bed at georgetown university hospital recieving as part
of a study one of the new alzheimers vaccines that is being tested to see
if it will remove some of the beta amyloid from his brain and maybe
help him

i do feel a tie to him and his situation
it did seem surreal as i laid there about to get that test that will tell
someone somewhere whether i have beta amyloid accumulating in
my brain also
one question that i hope to have an answer to soon
then
what will i be able to do about it
it may be nothing thats the bad part
nothing may be the answer unless that stuff hes getting iv shows itself
to work and help by removing that beta amyloid from his brain

then after reading his blog and mentally getting ready for the infusion
and hearing that pet scanner whorl around and sound like im
underneath a freight train
im told there was a problem with the stuff i was going to be given iv
it needs to be remixed

so all this waiting gets delayed now for ten more days when i
will get another chance at getting this 2nd amyvid pet scan done

then
as part of another study im in i had to do smell tests on 30+- odors
to see if i could recognize them
see that ofactory nerve the smeller nerve goes right to the area
underneath the brain where alzheimers disease starts
heck if that will help in someway advance the knowledge ill smell things
all day long i if i need to

next on friday i do an mri scan of the brain
then that will be followed by a glucose metabolism pet scan of the brain

then next week
its spinal tap time for beta amyloid and tau protein then
followed by the amyvid the beta amyloid pet scan of the brain

those are the two final answer tests that i have
they will give me the final answer
do i have it or not

the organicgreen doctor

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

alzheimers symposium part 3

ALZHEIMERS SYMPOSIUM PART 3
i will present a talk on my story with possible alzheimers
at the alzheimers symposium at the mayborn center in temple texas
on tuesday april 30, 2013

here is the the link to register for the event

part 3
the alzheimers disease neuroimaging initiative

i was on the aricept (donepezil) for three months and was stable
so i was allowed back on the alzheimers disease 
neuroimaging initiative study in the early mild cognitive study group

this study called the adni study is the largest alzheimers study 
and the most important one that has been done so far
its a large multicenter study 
when the data and results are collected and processed the
information is available to researchers all over the world

hundreds of research articles have been published using 
this data

during this study we have multiple tests done
i am not able to see my results of the tests as this is a blind study

here is the list of the tests we have done

the neuropsychological test is done
although i dont get the official results i know when i take the 2+
hour evaluation where i am with my memory loss
i have not changed in the last two+ years

then we have blood work done thats similar to the blood work
i had done when i saw the neurologist

the next test is the blood biomarkers and genetic tests

the two blood biomarkers are beta amyloid and tau protein and
the other proteins that they are trying to use to develop a protein
profile from the blood to be able to predict whether someone
has or will get alzheimers disease
in a recent study the test may be 88% accurate
its not available yet
but in the future you will go to the doctor and get this blood test
and find out whether you will get alzheimers disease

the genetic tests are testing for the genes for alzheimers
if you have the genes you get alzheimers
these are  rare and represent a very small percentage of the
alzheimers cases

then there is the apoe4 gene that is associated with an increased risk
of developing alzheimers disease
15% of the patients with alzheimers carry this gene
the apoe2 version tends to protect you
the apoe3 version tends to give you a mild case of alzheimers
the apoe4 version gives you the increased risk
if you have the apoe4/apoe4 double version you have a 15x increased
chance of developing alzheimers disease in your lifetime
if you are having symptoms and carry this double gene you have
a 60-90+% chance of developing alzheimers disease in your lifetime

i was able to have my genes done at a private lab
and i carry the double apoe4/apoe4 genotype
the sucky combination
so i have a 15x increase in my chances of having alzheimers
and with my symptoms i have a 60-90% chance that i have alzheimers

the next test we have done is the mri scan of the brain
of course they are looking for the same things that i mentioned before
to explain any symptoms
but they are also especially looking at the underneath surface of the brain at
the hippocampal area where alzheimers starts
they can detect subtle changes in the volume in this area early on in the
disease process

my mri scan as reported earlier was normal

the next tests we have done is a spinal tap analysis for beta amyloid and
tau  protein
the theory is that beta amyloid accumulates in the brain and causes a
sticky gooey substance that eventually forms plaques then later the tau protein
which forms the microtubules in the brain cells and nerve cells that carry
nutrition get damaged

the tau proteins as they are damaged become unwound
the body sticks phosphorus on the end of them
they form tangles and eventually inflammation and oxidation occurs
as the brain cells die

the tau proteins leak into the spinal fluid and can be measured

the beta amyloid protein is normally found in the spinal fluid
it goes to the brain
bathes the brain
is filtered through back to the spinal fluid
some people think the filtering mechanism gets messed up
some think there may be an overproduction of beta amyloid
whatever the cause it accumulate in the brain and the amount
in the spinal fluid decreases

so in a normal person like some of you
you have a normal amount of beta amyloid in your spinal fluid
and a low level of tau proteins there also

but in a person like my younger brother who is in the later
stages of alzheimers disease their beta amyloid level in the
spinal fluid will be low since its being deposited in the brain
and the tau protein levels will be high since the tau proteins are
being destroyed and leaked to the spinal fluid

so here is an graph where these result can be plotted out

in the upper left portion of the graph someone like you who are normal
with a normal amount of beta amyloid and a low level of tau protein
will plot out in the area not consistant with alzheimers disease

in the lower right portion of the graph someone like my younger
brother with alzheimers disease with a low level of beta amyloid
(its being left in the brain) and a high level of tau protein will
plot out in the area consistent with alzheimers disease

i was able to send my spinal fluid to a private lab and see the
asterisk in the middle that is my results
in the indeterminate range
this is consistent with my early diagnosis

these results along with my positive apoe4 double genotype makes
my diagnosis of possible alzheimers disease more likely

the next test we have done is the glucose metabolism pet scan
of the brain

we are given a radioactively labeled glucose in an iv
wherever in the brain that there is glucose being used by the brain
it will show up as increased activity

in alzheimers disease as the cells are being damaged they cant
utilize glucose well

so a normal patient will have increase uptake throughout the brain
while an alzheimers patient will have areas where there is decreased
or no glucose uptake

some people think that alzhiemers disease is a form of type 3 diabetes
there is resistance to the insulin so that the glucose cant be easily taken
up by the brain cells

studies are being done to use nasal insulin
the insulin travels up the olfactory nerves to the underneath surface of the
brain where alzheimers starts and where memory is processed
the patients are being evaluated for
improvement in their memory after using the nasal insulin

here is an example of the glucose metabolism pet scan
the one on the left is on a normal patient
you can see there is diffuse uptake ie red areas throughout the brain

the scan on the right shows a mild alzheimers patient
you can see on the sides of the brain there is no uptake
of glucose ie no red areas

my glucose metabolism test is normal
which is consistent with my early diagnosis

then the last test we have done is the
beta amyloid pet scan of the brain
amyvid is the only commercially available fda approved one

i have had two of these done with the study

in this study an iv material is given that will bind to beta amyloid
in the brain and will show up as high lighted areas

the amyvid pet scan is now commercially available in the dallas houston
san antonio areas
its expensive
it cost $3000-$6000
its not covered by health insurance or medicare or medicaid
there are $500 vouchers available at some sites

here is an example
the top scan is of an elderly control person who does not have
alzheimers disease
you can see that there is no red areas so no beta amyloid is  present

the bottom scan is of an alzheimers patient
see the red areas diffusely in the brain
that is beta amyloid
the hallmark sign of alzheimers disease

i plan on having one done at the austin radiological association in
austin texas next month

i expect mine to be positive

so now we have new tests available to possibly diagnose alzheimers disease
most of these are or will be commercially available some time in the future

next friday april 26
i will blog on
part 4
the alzheimers graph and what can be done

the organicgreen doctor