eight years ago i wrote after i had done some of my initial testing for the adni 2 study that
if it all helps it will be worth it
well
was i ever right
all this i am writing about that happened in 2011 led me eventually today to where i am waiting to restart the biogen aducanumab infusions at ucla hoping they work to slow all of this down some
well
i must say it was worth it
i write about doing a teleconference neuropsych exam
i remember my son went with me for this one
he did the 3 hour trip up and back with me
i realized as we sat in the waiting room with several obviously demented patients sitting there
that this seemed to bother him
he asked to wait outside while i did my test
heck
i felt out of place in that waiting room too
i knew and i think he saw what i would be like one day
i must say back in 2011 i expected to be where some of them were back then
but
im not
yes it was worth it
i was asked by someone this week about the neuropsych exam
i explained if you were an average intelligent healthy person with no memory issues and you took a full neuropsych exam you would not get them all correct
the more involved the test the fewer correct answers you will have
you will miss some but you will still have normal memory
for those of us with memory loss these tests are frustrating
for me
i know which ones i use to have problems with and i know when they are asked
its like waiting to get an electric shock
now
i must add i do much better on the exams then i did in 2011
not long after doing the initial ones for awhile my memory scores kept dropping
now they are back at the normal range
why
aricept (donepezil)
lots and lots of healthy things im doing
biogen aducanumab infusions
for some reason in the adni 2 study i would get the results of my scans in the mail
ie my mri and my fdg pet scans but not my amyvid pet scans
spoiler alerts
my several mris in the adni 2 study were all normal except for some white hypodense areas probably associated with high blood pressure
my two fdg pet scans for glucose were normal
early on in the disease process the fdg scans can be normal
as the disease progresses the brains cells die and cant take up glucose
i never got the results of the 2 amyvid pet scans i had in the adni 2
i skipped the last one since in 2015 i was trying to enter the aducanumab study
if i had had the last adni 2 amyvid scan i would have had to wait a year to get in the study
and
i probably wouldnt have gotten into the biogen aducanumab study
my
so much has changed in our lives over the last 8 years
XXXX
04-26-2011
TESTS
i am doing a study at ut southwestern called telecognitive assessment
big words for taking a neuropsych test on the computer
i will do a 45 min test the old way then will do a 45 min test on the
computer
this test may eventually be used in remote areas or in local offices
then transmitted to a neuropsychologist for evaluation so the patients
physician can use it in the evaluation for things such as memory loss,
dementia etc
i dont like taking those tests but will do it if it helps someone
i am also having my introductory mri scan for the adni-2 study
i had one in january that was normal
this result ill never see as it gets zapped away to somewhere else as
part of the study
next in 2 weeks is a fdg pet scan which measures glucose
metabolism in the brain
in alzheimers this metabolism is affected and will show up as
abnormal areas on the scan
also i then will have a more involved neuropsychological exam
(the sucky one)
04-27-2011
TESTS
on neuropsych tests in am getting good at doing these things
now i know the questions before they are asked and
can answer them much better now
i dont know if its the aricept or if its the repetition of the tests
it does affect their validity some
i did the 2 hr neuropsych tests for the video teleconference study
they are comparing doing the tests one on one vs doing them
via videoconference
they are providing these neuropsychology tests to remote
clinics in a foreign country-oklahoma
i preferred the one on one instead of the videoconference
the results are more valid
but this may be a good substitute for remote clinics
they really need a computer based program to do these tests
so they can be done in a doctors office and immediately
assessed for the doctor to use right then while the
patient is in the office
maybe i can develop one
they just need a good screening one to see if there is a problem
then more advance testing can be done
then i had my mri for the adni-2 study
its like laying on the sidewalk still for 30 minutes while someone
runs a concrete blasting machine next to you
i couldnt even take a nap while it was being done
like the other tests i am having for this study i will never know the
results
next i will have the fdg pet scan and a more elaborate lengthy neuropsych test
i may have to have a glass of wine after this one
then a week later i will have the spinal tap and the amyloid
pet scan
i prefer the spinal tap over the neuropsych test-its like a bad
dream where you cant ever finish what you are doing or get
to where you are going
if it all helps its worth it
XXXX
yes
as i said
if it all helps its worth it
well
it all has helped
and
yes
it was worth it
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
my facebook blog page link organicgreendoctor
the organicgreen doctor
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