Wednesday, June 29, 2022

my story revisited #140-this studys final report is due later this year

MY STORY REVISITED #140-THIS STUDYS FINAL REPORT IS DUE LATER THIS YEAR

as i sat in the lounge chair at the ucla pet scan facility awaiting my injection of the radioactive label that would when injected attach itself to any tau tangles that have accumulated in my brain
i started reviewing my old posts from 8 years ago to decide what to write on today

this tau pet scan if i could see it would tell me where in the brain my alzheimers disease is active
if i knew where it was located i would sort of know what kind of symptoms i would have first as my disease progressed
eg
if it was in the frontal lobes i might have more what i call a$$hole symptoms 
angry aggressive restless to name a few
right now i am sort of laid back a lot and dont let things bother me too much
i try to generally be nice to folks
i hope that doesnt change either

my last one was a year ago
i wish i could put them side by side to see if the disease has progressed or regressed some
they think that even though my  drug aduhelm or aducanumab removes the amyloid plaques from the brain it also may slow the development of tau tangles in the brain
it also might work some against inflammation in the brain

when my study is over with in two years they will be able to eg look at my tau scans and others ones i have done in the study to tell if that has happened

unless they release those copies to me ill never know what my results are

i know i know i signed a paper that i understood thats what would happen
but
i still would like to know 


this syringe has the radioactive material in it that was injected into my arm

it felt cool going in then i had no symptoms after that
i waited 90 minutes then the scan took about 30 minutes
total time at the ucla facilities was about 4 hours

the old blog below was about the a4 study or 
antiamyloid treatment in asymptomatic alzheimers study

in 2014 i tried to get into this study but i wasnt accepted since i had a diagnosis of mci due to alzheimers disease
this study wanted normal memory folks who have positive amyloid on amyloid pet scans
they then were given solanezumab monthly for several years

solanezumab works similar to my drug aduhelm or aducanumab as it binds to amyloid and removes it

the hope is that by treating folks before memory loss starts that the disease can be sowed down

several drugs since then including my drug aduhelm or aducanumab are doing the same studies

this study is different in that its being going on now since 2014
the results will be done this december 
everyone is anxiously waiting the results
the solanezumab doesnt work as well as these other drugs though

it will be a few years before the other drugs studies are completed

fingers crossed

note this study is closed to new volunteers
__________
06-27-2014
A4 STUDY-WE NEED HELP!!!

antiamyloid treatment in asymptomatic alzheimers study
they are looking for

people age 65-85 years old
who have normal thinking and memory

patients will have the new amyvid pet scan i have written about
so many times
it identifies those who have that beta amyloid in the brain
patients with alzheimers disease have beta amyloid in the brain











for those with positive scans  some will be given an infusion of a

new alzheimers vaccine
that will hopefully bind to the accumulated beta amyloid
and remove it from the brain
and hopefully remove it also before it can get stuck in the brain

if this all works then you wont get alzheimers disease or if you do
it will be much milder

folks i would jump at this in a minute as its right now my only hope
to slow things down beside those healthy things i mentioned above
i would be first on the list
except im too young to qualify

what if i told you
you can have a test that may show you may have alzheimers disease
but you could take this new drug that may make it go away
would you do it
no doubt i would

and i know that its really about helping your kids and your grandkids
your nephews your nieces
im afraid to say but it appears that once you get  alzheimers disease
and have symptoms then this stuff may not work as well

take the time to go to these two links
look for your state
and consider joining the study

researchers have to sort through a lot of volunteers to find those
at risk
they desperately need volunteers!!!

so dont give me this crap about you dont want to know
were talking about your kids their kids and future generations
being able to be treated for this disease years before it hits them

just think of your family member or friend who has or has had
this terrible disease
what if you could have prevented it from happening to them

it can only happen right now if you folks help us out in finding a cure

click here
a4 study
and
a4 study now is the time

to read more about it and to find one near you
they need more volunteers

please pass this information on to those who might qualify
__________
this a4 study is closed but there are several others that have or will be starting up treating prodromal or asymptomatic or prealzheimers patients
ie 
those who have amyloid in the brain but dont have symptoms yet

you can find studies treating asymptomatic folks in studies by going to clinicaltrials.gov and typing in prodromal alzheimers disease and or a specific drug
look for any that are using the new antiamyloid drugs like aducanumab or lecanemab or donanemab

next for me 
another mri next week looking to make sure i have no microbleeds in the brain

i also have having my ocular migraines each week
they last for about 20 minutes them leave me with a few days of headaches easily controlled with an acetaminophen at maximum dose
is it the aducanumab doing this 

im not sure but the neurology folks dont think so 

is it all worth it
yes
it may help me but it will also help those generations after me
consider doing your part to help


the organicgreen doctor

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