when i was diagnosed i was rejected by the adni study mentioned below since i couldnt qualify to be in the normal control group of that study
i was started on aricept (donepezil) for my diagnosis and was told if after 3 months i was stable on the medication that i could reapply to be in the mild cognitive impariment wing of the adni study
as it turns out the adni study is the most important alzheimers study thats ever been done
most of the studies you know see reported in the news has some basis from the data obtained from the adni study
including the biogen aducanumab study
as i read studies i realize that they are talking about my results
my dna my rna my genetics my mir scan my blood proteins my amyvid pet scans my memory testing my spinal tap results
there were only around 1000 of us in the adni1 and the adni 2 studies
there were onlly 10 of us at the ut southwestern medical center alzheimers center
so
when i see those results i know that i am part of the beginnigs of a lot of alzheimers study
for me
just doing this study has fulfilled my desire to contribute to the advancement of alzheimers research
so
i feel like i am complete now
plus i did the biogen aducanumab study after this one for almost 3 years and am looking for another treatment study when i qualify probably in march of 2020
the adni study is just diagnostic testing only
i couldnt get any of my results on any of the testing
so
i duplicate a lot of it in the private world
like
spinal fluid analysis genetic testing mri scan
the memory testing i could score as i did the exam so i could tell if i was off on the scoring
the amyvid scan i was not able to duplicate but i did get the result when i entered the biogen aducanumab study in 2016/2017
yes it was positive
so the blog below was written 3 months after i was diagnosed
my life had changed during that time period
i had been on the aricept (donepezil) for 3 months and had adjusted to the side effects
the only ones that really affected me was the leg cramps and the sleep disturbances that interferred with my sleep
thats my biggest issue i have even today is the lack of sleep at night
ive learned to live with it
since
without the meds i might not be doing as well as i am now
although i cant be sure if thats why but i feel like its part of the answer
in the blog below i mentioned the amyloid pet scan called the amyvid scan
at that time it was only available in research studies
now its readily available and frequently used by private neurologists to diagnosis dementia patients
03-02-2011
NEW ALZHEIMERS STUDY
as many of you who read this blog know i was diagnosed with
early mild cognitive impairment amnesic type when i enrolled in a
research study at the university of texas at southwestern medical
center in dallas
during the initial evaluation it was discovered that i had some short
term memory loss not noted by other people but looking back i
had noticed some problems
no one my wife she, patients, my nurse d, friends, fellow doctors,
clinic employees or family noted any problems
i was to be in the normal control group but after my diagnosis of mci
i was started on aricept because of the changes and my family
history of alzheimers and was not accepted in that study
now that i have been on my medication for 2 months and am on a
stable dose i have the opportunity to start on a new study
the new study is called the alzheimers disease neuroimaging
initiative-2 (adni-2) and is sponsored by a grant from the national
institute on aging
i will be one of 10 persons in this national study from this institution
i will be in one of four groups being studied
the group i will be in is the early mild cognitive impairment group
the other groups are cognitive normal (where i was going to be
when all this started), late mild cognitive impairment, and
alzheimers disease
i will be followed for 54 months and will have serial neuro-
psychological exams(thats what caught mine), blood work to
include dna analysis to see if i have the genetic gene for
alzheimers(apoe gene with apoe 4 being the sucky gene),
spinal taps to check for amyloid protein levels(theory is thats what
is deposited in the brain that causes all this @#&*) and tau protein
levels (a protein that becomes unraveled in the brain),
mris, two different pet scans that shows amyloid deposits and one
that shows labeled sugars(fdg) utilized in the brain.
as the disease progresses the scans gradually become more abnormal
the pet scans that are used are only available in research studies
my progress will be monitored with these tests over this
period of time and any progression will be easily detected
the problem is some of the testing will not be available to me
to review
i will do extra spinal fluid analysis myself and the dna analysis
separately as those results i will not be able to see from the
research study
the neuropsychological exam results will be generally be reported
as the same, worse, or better
the scans may be partially reviewable
at the end of the 54 months i will know if i have progressed and
whether or not i have alzheimers or will develop alzheimers
at my death a brain autopsy will be done to compare the changes
that have occurred in the brain with the results seen on the scans
why do this study
although much of what is done is not reviewable by me i will still be
able to have my progress monitored and will generally know where i
am with this disease
i want to feel like i am contributing to the research for the cure and
treatment of this devastating disease that will affect everyone who
reads this blog in some way and may be the disease that breaks
the bank on our health care system
i will blog as i go along with this study which starts in april
what i didnt mention in the above blog was that i was also in a texas based alzheimers study during this time where i was seen once a year at the alzheimers center and had memory testing done and a neurological exam by a staff neurologists
i did that study for 7 years until i moved to california
those exams and memory results i did get to review later
in fact at one of my office visit they laid out all my moca tests for memory for me to see the scoring and thats when i realized how low my scores had dropped after my diagnosis was made then over time they rose to normal levels
i hadnt realized that my scores had gone that low
i found out later that at my lowest score times that my wife she and the research coordinator had sat in her office and both cried
anything as part of the adni 2 study i did not get to see the results
the organicgreen doctor
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