my story revisited #158-im glad i didnt qualify

MY STORY REVISITED #158-IM GLAD I DIDNT QUALIFY

when i wrote the blog below i was at the tail end of the adni2 study i was in
it was a lot of diagnostic testing over a five year time period
like blood work mris memory testing spinal taps amyloid pet scans etc
i was looking for the next alzheimers study to participate in
i wanted one that used a drug that might help

one study described below was the a4 study
folks with no symptoms would be given a long term treatment with a drug called solanezumab
which removes amyloid from the brain

i would interview to get in the study
i was rejected since i had memory loss that showed up on memory testing

this a4 study will be reporting its results this year or the next
the drug removes amyloid plaques from the brain similarly but slightly different from the one im on now 
biogens aduhelm

when solanezumab was used to treat patients with early alzheimers it did not work
i expect thats what will be shown with the a4 study

also i decided to get on the reversal of cognitive decline protocol which i took for a couple of years but gradually weaned off some of the supplements that werent based on good evidence they worked or based on abnormal labs
eg
my vitamin b12 was below normal so i take vitamin b12 every day
my vitamin d3 was below normal so i take vitamin b 12 every day
the other things i do on the protocol are things we all should be doing like controlling blood pressure cholesterol diabetes weight getting adequate sleep controlling anxiety depression stress eg

i have been on this now for 8 years

i saw my neurologist that day to get a refill of aricept or donepezil 
taking this early in my diagnosis may be one of the things that has slowed down my symptoms

it was also about this time i was looking for a treatment study
since the a4 study rejected me
i started looking at the aducanumab now called aduhelm studies which were recruiting patients
it would take 2 more years to get in that study

i am due to get my #24 aduhelm infusion at ucla in 3 weeks
then
later next month i have an all day of testing for the study
__________
10-08-2014

IMPORTANT DAY
this is an important day today for me
in my fight against the possibility of having alzheimers disease

this morning i leave at 500am to make the 3 1/2 hr drive to
the alzheimers research center at ut southwestern in dallas
for my first of several appointments today


the first one is a follow up on my annual visit for the
adni study or alzheimers disease neuroimaging initiative study
where i have several annual tests done
i had mentioned two months ago that funding was delayed or
discontinued for this study long term
this is the largest and most important study thats ever been done
on alzheimers disease
hundreds of research articles have be published from the data
yes some of my data is in there from this adni study

so today i get to repeat a lot of what was done in august
lots of questions especially memory questions
lots of blood drawn for rna and dna analysis chemistry lab tests
alzheimers blood test etc
an examination by a neurologist
then
i am so lucky
i get to repeat the much dreaded torture test
the neuropsych test
the examiner and i have become friends she has given
me this test so often

then
on another date next month i get an mri scan of the brain to see
if any brain shrinkage has occurred or especially if the area
where alzheimers starts the hippocampus has shrunken at all


then sometime this morning i do an interview for a new research
study called the A4 study
AntiAmyloid in Asymptomatic Alzheimers study

basically they are looking for folks 65-85 yrs old
normal mental status
with positive biomarkers-abnormal pet scan for beta amyloid
(they do this scan on all volunteers)

then the selected folks will receive what i call the alzheimers
vaccine solanezumab as an infusion for 36 months
or a placebo
no placebo for me please

if it works it will remove beta amyloid from the brain and the
disease process will be slowed down or stopped
several other studies are going on similar to this all over the world

you would think folks would be jumping in line for this study
a potential game changer in alzheimers treatment and prevention
but
no they are having trouble finding folks to join the study

me im el numero uno in line for this study
up front i am

if you are even remotely kin to me you probably are a candidate
for this study

please if you know someone who may qualify
click on this link for more information on how to volunteer
we cant find an answer unless you volunteer
in texas its ut southwestern and baylor college of medicine houston
in california its ucd, uci, ucla usc, ucsd, ucsf etal
in okla its tulsa university
look your state up for the nearest locale
ark its ut southwestern in dallas or tulsa university in okla


then after lunch today i meet with the neurologist that sees me
at ut southwestern for my annual follow up visit
this is not a research visit
its the real deal like when you see your doctor
i chose to be followed there instead of in austin since it has
worked out better for me coordinating my care

i mainly go to get my refill for my aricept (donepezil) which
may be slowing down my symptoms i hope


examiner.com

then
i plan to discuss a new study from ucla
i mentioned it in last fridays blog
its called
reversal of cognitive decline a novel therapeutic regimen
by dr dale bredesen
i plan to do a longer more involved blog on this on friday

basically its using life style changes ive written about before
then based on evaluation and labs using vitamins and supplements
i counted 16 of them total

his results
9 out of 10 folks studied got better
the one that didnt was a more advanced alzheimers patient in a later
stage of the disease
the other folks were early like me or more advanced then i am

so i think it may be beneficial and worth trying
whats to lose right

i will discuss my getting on this regimen with her
even i think if it means i cant do the A4 study or the adni study
thats how important this may be

so today is an important day for me
a crossroads maybe
a cure probably not but more of a way to slow down
and delay things
__________
i am glad things worked out like they did
ie i didnt get in the a4 study
we will know in about 2 years how well aduhelm really works
its cousin lecanemab is lowering cognitive decline by 27%
it spossible aduhelm will get close to that wihen its results finally come out 

in the meantime
ill just keep getting infused each month

the organicgreen doctor