almost 9 years ago after being on the aricept (donepezil) for at least 3 months and being stable they allowed me to reapply to be in the adni 2 study alzheimers disease neuroimaging initiative
not in the normal control
but
in the early mild cognitive group of the study
no treatments would be done
only diagnostic studies that ended up defining what kind of workup is done for someone with dementia
if you ask alzheimers researchers what is the most important alzheimers study ever been done they would say its the adni studies
i did almost 5 years of this study before i took time off then decided that i would only do treatment studies that would show some promise in slowing this disease down for me
i did the 25 months of the biogen aducanumab study using aducanumab as a potential treatment
it was stopped last april
i now have to wait unitl march 2020 before i can enter a new treatment study
in the first two years of this adni 2 study my memory slowly got worse before it started getting better
why
im hoping it from taking the aricept (donepezil) and aggressively taking care of my health
if you had told me when i wrote that old blog that i would be sitting here today 9 years later writing this blog
well
i wouldnt believe you
whatever the reason
ill take it
there is the adni 1 then later my study the adni 2 and now there is a new adni 3
i will not be doing the adni 3
adni 3 linked here is also only diagnostic testing
as i was writing the two old blogs below i wasnt optimistic for my future
XXXX
04-18-2011
ADNI-2
today i start my alzheimers research study called adni-2
alzheimers disease neuroimaging intiative-2 is an extension of
the adni-1 study
this study will look at normal controls (thats the category i was
going to be in when all this mess ive got myself into started)
(many of you know who have read my blogs that i entered this
study to be a normal control but flunked the initial
neuropsychological test in the short term memory department and
was not allowed in on the adni-2 normal group
from there a trip to the neurologist landed me on aricept and
a decision to stop my medical practice because of the fear of
causing harm)
other categories are early mild cognitive impairment-thats my group
late mild cognitive impairment and alzheimers disease
we will all be followed for 54 months with
blood work,
neuropsychological tests
(thats the one that caught me and i hate taking it. its like taking a test
where you dont know the material and you know you are going to flunk it.
its like taking a test you havent studied for and not knowing the answers.
its like a bad dream. i dread it more than the spinal tap)
a spinal tap to assess amyloid and tau protein-both are elevated in alzheimers,
mris, a pet scan to look at radioactively labeled amyloid, and a
pet scan to look at radioactively labeled glucose which shows
how well the brain is actively functioning
these tests and data are sent to a central place usually ?ucla for
developing a data base that research will study sometimes for
years
sometimes a cell line is developed if a significant finding is made
maybe mine could be called the togd gene
also included in this study i will sign a permit that will allow an
autopsy of my brain when i die so they can compare what they
see in my brain at my death with what they saw on the scans and
neuropsychological tests
the final diagnosis of alzhiemers is made only on autopsy
will this study help me
no
but it may help my kids, grandkids, you or your family
remember you will be affected by this terrible disease in some way
there is no drug testing in this study
there is only the scans and lab studies that are not readily available
outside the research system
problem is ill never know what my results will be
as all the test subjects are identified by numbers and the results go
into this research black hole never to be seen by me or the other
people in the study
ill remain on my aricept until it doesnt work anymore
there has not been any worsening of my condition
i have gotten adjusted to my meds and have few side effects
i have lost those great dreams i was having
guess ill have to get netflix now
tomorrow i will blog on anything new after by initial visit
at least i dont have to repeat that damn neuropsych exam this time
04-09-2011
ADNI-2
well i think i made it into the study
i will know later this week
if the labs are ok then i should be a go for the study
i get to start with a mri since its the hardest to get scheduled
then
i will follow up with a day of neuropsychological exams-thats the one
i dont like to do as its frustrating since some of the short term
memory parts i have trouble with
i did a minimemory one yesterday and had some difficulties with some of
the short term parts again but did not seem worse than what i
had done in november of 2010
the next neuropsychological test will be more involved than the
sucky one i had to do that got me in this mess im in now
my wife she has to go back with me when i have the spinal tap done
i still would rather have that than the neuropsych test
she also has to be interviewed more extensively about me for this
study (hope she doesnt tell any family secrets)
then i go back again to have the 2 pet scans done
these will be my baseline studies for this almost 5 year study
with the probability that it will last longer if funding is available
so my disease process will be monitored closely over this
period of time
i feel lucky since my wife she and i wont have to be guessing
where i am with my disease as we will have objective data
to look at
my close relative with the disease has progressed over the last few
years
for him and his wife and his family and his doctors its harder to
know where he is with his disease and when to have him stop
driving and doing other things that could harm himself and others
with this study the evidence will be there for my wife she and i and
my family to see so we can make those decisions more easily
this study is an important national study that will probably define
how a patient gets evaluated and monitored for alzheimers
now if they could just find a prevention and a treatment of this
disease
i have realized that once the diagnosis of alzhiemers is made the
treatment is easy as there is only a few choices and they dont
really affect the course of the disease they just slow down the
symptoms some
the biggest problem in treating alzheimers is a social one
that most people are not ready for
we werent with my mother
as i do each test although usually i may not get a full report i will
know how im doing
i will blog on it each time
in late summer i will have back all my genetic and spinal fluid
results and will post them on this blog and will explain what it
all means
hopefully all of this will help someone when they or their family
members get this disease
it will affect you in some way eventually
XXXX
so here i am below almost 9 years later like an old timex watch
i am still ticking doing my talks doing all the things that i like to do
sort of
waiting for that other shoe to fall
hopefully i can keep that shoe on for awhile
i will be on an alzheimers panel at the valley presbyterian hospital in van nuys california on thursday october 10 2019
i will on the panel that day with other people diagnosed with alzheimers
each person present with their spouse will represent different stages of the disease
what do we think about all this is what we want those in the audience to hear
here is the link to the conference
our santa barbara walk to end alzheimers is on saturday november 2, 2018
here is the link to my team and the walk site
click and donate and or join us
or
donate or join your local walk where you live
the organicgreen doctor
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