my story revisted #145-my first alzheimers study

MY STORY REVISTED #145-MY FIRST ALZHEIMERS STUDY

the first alzheimers research study i was in was the adni 2 study mentioned below
there is now a adni 3 study being done
they added the tau protein pet scan and added the newer alzheimers blood test to the adni 3 study

in this first study i did i was originally going to be in the normal control group
however
they found i had mild memory loss that has lead to my diagnosis of mild cognitive impairment due to alzheimers disease based on a positive amyloid pet scan and abnormal spinal fluid analysis of amyloid and tau
plus the abnormal original neuropsych exam
my memory tests like the moca and mmse are now in the normal range

i had two spinal taps in the adni 2 study
the first i sent a sample off to a private lab for analysis for amyloid and tau
the second tap i had planned to do it again so that i could see if the amyloid and tau levels were in the alzheimers disease range
however researchers that day needed some spinal fluid for a ms study so i donated my extra fluid to then
i was never able to repeat my spinal fluid analysis in the private lab

this was the time in 2014 i was starting to look at potential treatment studies
the solanezumab study mentioned didnt show it worked
the a4 study with solanezumab will present its results in prealzheimers patients later this year
the bace inhibitors i mentioned below didnt show it worked in fact it made things worse
the nasal insulin was going to be studied but the mechanism for delivering it up the nose had problems
they are just now starting the nasal insulin studies

i didnt get in the a4 study since they wanted folks with no memory issues
i couldnt get in the solanezumab study since they were looking at folks more advanced in that study

it would be another 3 years before i got accepted in the biogen aducanumab study

i havent decided if i will do another study after the biogen study 
it would have to be a drug that showed a significant chance of slowing things down more than aducanumab

my next aduhelm or aducanumab infusion is in two weeks
_________
07-22-2014
ITS THAT TIME AGAIN
this will be the fourth time i go through all these tests
i did them when i started 3 years ago
then i do them every year


i am a study subject in the early mild cognitive impairment
group in the largest alzheimers disease research study ever
done
its called the adni or alzheimers disease neuroimaging initiative
its a multicenter center study that takes the data it collects and
once its all entered each year it is readily available to researchers
all over the world
hundreds of research studies have been written from this data

much of the newer stuff thats known on alzheimers disease
comes from this study
the new treatment studies that are starting up now uses the
information from the adni study to guide their studies

today i will have done
blood work like you usually will get at a doctors visit like a cbc
and a metabolic profile and a urinalysis
as part of another study they will run a new alzheimers blood test
they are working on that will identify folks who will get alzheimers
looking at protein markers and inflammatory markers comparing
what they find with the other tests and scans i have done
right now the test is about 90% accurate


a full neuropsychological test that takes about 2 hours to do
its the hardest test to do for the study and the one i dread the
most
i jokingly call it the torture test
i dont even mind the spinal tap
this will be the 6th neuropsychological test that i have done for
this study
so i know when i take them if i have gotten worse or just stayed
the same
so far my results have been fairly stable
i know that if i have alzheimers disease that there is a point in the
future when a drop off will start to occur
they dont even have to look at my results
i can tell them the results when i walk out of the room

this year i dont get an mri
i have had 5 mris so far in this study
they all have been normal
they are looking at the under surface of the brain at the hypothalamus
to see if it has shrunken at all
thats where alzheimers disease all starts
right there

i also dont get the glucose metabolism test pet scan or the
amyvid pet scan this year
both these will show abnormalities in glucose metabolism or
in beta amyloid accumulation in the brain if alzheimers is present
i dont get these pet scan results as they are protected by the study 

then i dont get the spinal tap this year
they check for beta amyloid and tau protein accumulation in the
spinal fluid
abnormal levels of these two proteins occur in alzheimers disease
i had my fluid tested three years ago and its abnormal
last year when i had my tap done i donated the fluid to a ms study
that they desperately needed fluid for
foregoing a 2 year follow up at a private lab which would have
given me another point on the curve to look at

this year i will discuss with them
about trying to qualify for one of the new treatment studies that
are starting up using one of the new alzheimers vaccines
called solanezumab or one using nasal insulin or one using bace inhibitors

these are three of the new ways that if they work a patient could
be treated early on in the disease or even before symptoms start
a lot of hope is put into these studies

plus i will always continue doing those things we all should be
doing to stay healthy
and keep taking my aricept (donepezil)
_________
would i do these studies again
yes i would

i have been properly and accurately diagnosed

now i just need to keep doing all those healthy things im doing
taking it one day at a time

the organicgreen doctor