MY STORY EVISITED #71-NEW STUDIES AND FAMILY REUNION 2012 
after i was diagnosed with mild cognitive impairment thats now shown to be due to alzheimers disease i started looking at as many alzheimers studies and reading as many alzheimers articles as i could looking for anyway i could find that might slow down this disease
eg this morning i have read at least 10 articles or research studies on alzheimers
there isnt much that happens in the alzheimers world that i dont know about
yes ive read about lillys new drug donanemab that works like my biogen adcucanuab drug
one study being done was on resveratrol a chemical found in wine and grapes
to get enough resveratrol that was used in the study mentioned below you would have to drink gallons of wine each day
i found the clinical trial on resveratrol and got on the dose they were using
i took that dose for 8 years until april when i got sick with what i think was covid 19
i couldnt tolerate any meds and barely could i eat any food
ie i lost about 45 lbs and at one point i thought i was going to die
eventually the study couldnt verify that taking resveratrol long term would make a difference
not proven but not unproven so until i got sick i took it
since im better i have whittled down my supplements and meds to those that are really necessary
like my aricept (donepezil) my omeprazole my b12 for a low b12 and my vitamin d3 for a low level
i have decided not to restart my resveratrol
i still cant tolerate my daily glass of wine
then
there was a study looking at folks with early onset alzheimers disesase
these folks represent less than 1% of the cases of azheimers disease
if you have the gene you will get early onset alzheimers disease
using spinal fluid analysis for amyloid and tau they found abnormal levels
using the amyvid pet scan for amyloid they found amyloid present a long time before symptoms started
this information was used and is being used now to diagnose alzheimers disease in alzheimers patients
like me
like those with the late onset alzheimers disease usually associated with the apoe 4 gene
at the time i wrote this i had already had my spinal fluid analysis done for amyloid and tau
it was done as part of the most important study ever done on alzheimers disease called the adni study
i was in it for 5 years
in the study i was not given my results but i obtained fluid from my spinal tap for the study and sent it to a private lab
it showed the amyloid and tau was compatible with my diagnosis mild cognitive impairment or mci
i also had two amyvid pet scans in the adni study but couldnt see the results
about 4 years later when i applied to be in the aducanumab treatment study i had another amyvid pet scan which was positive for amyloid thus solidifying my diagnosis
now the amyvid and sometimes the spinal tap is used commonly to make the diagnos if its needed
soon the alzheimers blood test will be used probably in place of the spinal tap
that test will be coming available soon via your doctors order
so now not like in 2012 you should definitely know if you have alzheimers and if you dont you should be able to tell what other dementia you have or what other entity is causing your memory loss
before i wrote this first blog below i had written one about our family reunion
my younger brother was diagnosed with alzheimers in his mid 50s
even though he was diagnosed young its unlikely he had early onset alzheimers which is due to that gene
i had gene testing and do not have that gene but i do have the apoe 4 apoe 4 genes
ie the late onset gene
my guess he had the same thing
i remember that family reunion
he was probably in the early late stages at that point
he wandered around visiting with us
he did have some aphasia as part of his alzheimers along with his other symptoms
he would sit with all of us and listen to us smiling and seeming to know us
the next year at the family reunion he was in a lounger bedridden having to me fed
he died a month after that reunion in hospice
he went how i would like to go
surrounded my family and friends
in the last 8 years we are getting closer to a treatment maybe with my drug biogens aducanumab
maybe with lillys donanemab
__________
NEW STUDIES
here are some new studies on alzheimers that are being done
one is on resveratrol
its found in red grapes and red wine
(yes i have a glass of merlot every night)
however the amount of resveratrol used in this study is
the amount found in bottles and bottles and bottles of merlot
they are now looking for study subjects with mild or moderate
alzheimers disease
could it help
this study could be the one that would show that it does or
doesnt prevent or slow down the development of alzheimers
you can go to the resveratrol study website to see if the study
is being done near you
i would enter this study but know that i cant since im in the
adni-2 study
the next study looked at patients with autosomal dominant
alzheimers disease
it you have this gene you will get alzheimers disease
they looked at beta amyloid and tau protein in the spinal fluid
beta amyloid levels go down in the spinal fluid as the beta amyloid
gets stuck in the brain
this is what is thought is the end result of the process that causes
alzheimers
tau protein is released when the nerve cell nutritional channels are
damaged and the tau levels go up in the spinal fluid
with alzheimers disease you have low beta amyloid levels and high
tau protein levels in the spinal fluid
(i had these tests on my spinal fluid and i have indeterminate levels of
both which could match my diagnosis of early mild cognitive
impairment if it is due to alzheimers disease)
the other test they looked at was the beta amyloid pet scan
(available now as the amyvid pet scan) using
a radioactive labeled product that binds to beta amyloid and will
show as a red highlighted area as below
what they found is that the beta amyloid and tau levels were found
to be abnormal in these patients as much as 25 years before
symptoms occur
also the beta amyloid pet scan were found to be positive as early
as 15 years before symptoms occur
family members without the gene had normal levels and normal scans
so we can or soon will be able to detect whether a person will get
alzheimers disease
now all we need is a good treatment or preventative treatment
thats coming soon
but will it be soon enough
07-09-2012
FAMILY REUNION
everyone should have one of these
our family is scattered across the us
we communicate digitally a lot
with facebook email texting skyping and
yes sometimes the old fashion way
a phone call
and even rarely a letter
a reunion is a way to bring all these people together
once a year to catch up on everyone
seems everyone gets greyer wider slower but
we all look alike
seems we get to look more alike every year
this year was more special i think
one brother who has alzheimers had just gone through a
difficult time requiring hospitalization
but has been out for a few days after being
stabilized
we got to see him at the nursing home then he later
came to the reunion
i think he got the most out of us all getting together
yes i think he was the one
it was good for us to see him better and able
to interact with us better
this made this years reunion special
__________
we are getting closer to a treatment
we can diagnose alzheimers with a good degree of accuracy
take care of your health
enjoy your family whenever you can
the organicgreendoctor
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