MY STORY REVISITED-ADNI2 STUDY NOW THE ADNI3 STUDY IS HERE
when i wrote this blog 8 years ago i had been in the adni2 alzheimers research study for two years
i had undergone lots of labs lots of memory tests lots of neurological exams one spinal tap several mris a glucose metabolism pet scan genetic testing and at least one amyvid pet scan
so someone somewhere had all that information on a computer somewhere
if someone could sit down and look at all the results they could have called me and said
you have mild cognitive impairment and it is definitely as definitely as you can be that its due to alzheimers disease
now that was never done
why
i agreed when i entered this study that i understood that i would never get the results
i didnt like it but i accepted it
why
i understood that to have research studies to be accurate it has to be done this way
i also understood and now know that this adni2 would be and now is the most important alzheimers disease study ever done
i got to be one of those research subjects
me and a few thousand others that have changed the trajectory of alzheimers research
somewhere in the world actually in lots of places in the world researchers have my human genome that has been mapped out my dna my rna my blood my mris my amyvid pet scans my memory tests my neurology exams my spinal tap results
thousands of research papers have been written using this data
my data is in the middle of all of this
so
i understood this when i joined the study adni2 i accept thats the way it is
i originally volunteered for this study to be in the normal control group but during the evaluation it was found i had memory loss greater than it should be for my age and occupation
the end result was i retired got on aricept (donepezil) and was diagnosed with mild cognitive impairment due to alzheimers disease
had i not volunteered for that study i fear that things would have gotten worse before i was diagnosed
i wonder how long i would have practiced before i really noticed symptoms
would things gone worse for me
getting into the adni2 study led to me getting into the aducanumab treatment study that may have helped to slow it down some
i hope and should find out on monday when i will get reactivated in that study
my opinion is this drug should be made available for use
its not a cure but it seems in the study to slow down the disease
i expect a long term treatment study like for 4 more years will be done
i right now have my hand up volunteering to be in that one although i am already waiting for the extension trial i was in to be reactivated
whichever treats me the longest is the one i want
as i was looking for a treatment study i was offered a spot in the adni3 study
it basically is the adni2 study with the addition of tau protein pet scans
they are also using new labs and new scan materials and new computer technology
the adni3 study is available in many areas
here is the link to the adni3 study
__________
04-17-2012
ADNI 2
adni 2 stands for
alzheimers disease neuroimaging inititative phase 2
its a mulicenter study on alzheimers
mainly funded by the stimulus package from 3-4 years ago
its the 2nd phase of this study
it will last for 5 years but if funding is present it will be continued
it is considered the most important study on alzheimers that
has ever been done
important research information is being written on results of
this study almost on a weekly basis
in this study there are 4 categories of study subjects
-normal controls-i tried to enter as a normal subject but it
was found i had some short term memory deficits so i was
placed in the next category
-early mild cognitive impairment-these subjects are real early
in the process
many like me have very subtle symptoms not
noticed by others
many are still working their jobs
none are pilots or doctors or air traffic controllers who are still
working though
although real early many of us are already on aricept (donepezil)
which can slow the symptoms of alzheimers but will not stop the
progress of the disease
sometimes starting the meds now at this stage will delay the onset
of the disease sometimes as much as 5 years
-mild cognitive impairment-these subjects have less subtle findings
some which are obvious to friends and relatives
-alzheimers disease-these patients have all the signs and symptoms
of alzheimers
if the new medicine crenezumab thats being tried on the large family who
carry the early onset alzheimers gene in columbia works then that medicine
could be started one day on normal subjects who will get the disease or
those of us in the early mild cognitive impairment group
the disease would be stopped or slowed down significantly
we are a few years away though from knowing if that will work
sadly for me since i carry the apoe 4 genotype double gene
these meds may not work as well on me
today the tests i will have are
a general interview with my wife by the research coordinator to make sure
i am not having any new problems
a large number of vials of blood sent for multiple screening labs like
thyroid liver function test cbc etc and tests for proteins in the blood
that have been associated with alzheimers disease
eventually these blood tests will be available to everyone so that you
can be screened to see if you have a chance of getting alzheimers
it may be 90+% accurate
then next i have the test i dread the most the
2+ hour neuropsychological exam
the torture test
its frustrating because i know that i will have problems with parts of the
tests and cant do anything about it
then i have a mri of the brain
its looking for brain shrinkage and for subtle changes in the size of
the hippocampal area of the brain-the area where all this crap
starts
then i get a one year reprieve and go to annual visits
next year i will have all these tests done plus a spinal test for
amyloid and tau protein a fdg glucose metabolism pet scan and
a amyloid pet scan (thats like the new amyvid test thats now available)
is it worth doing this
yes it is even though i dont ever get the results
this research study the adni 2 study may help me one day but
will definitely help my kids or your kids or our grandkids
so
its worth it
__________
if it makes you feel better about me my memory tests are now in the normal range
in fact i will have the in the office moca test done on monday
i expect to get a perfect score on it
on the jacket my wife she is wearing in the picture above it says
fighting for the first survivor
that survivor i want to be me
the organicgreen doctor
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