my story revisited #194-would i do it again you betcha

MY STORY REVISITED #194-WOULD I DO IT AGAIN YOU BETCHA

i am at the end of the line now
i have one amyloid pet scan to go next week and one day of memory testing in about 3 months
then
im through 

the end of a 8 year journey that started in 2016 when i applied to get in the study where i would either get placebo or aduhelm or aducanumab
my journey up to 2019 is documented in my old blog below

i will have had 6 amyloid pet scans of my brain since 2010
if  you could line them up and look at them
they would tell a story 
they would show how my amyloid plaque progressed until around 2019 when i started getting the real drug aduhelm then there would be a slow decrease in the amount of amyloid plaque until now
this amyloid pet scan i will have next week should show that the measurable amyloid plaques are all gone

how i wish i could see all of them just to know whats going on upstairs in my brain

then
yesterday i had a tau pet scan 
i think this was my 3rd one i have had

the tau scan shows where tau tangles are accumulated 
where they accumulate is where in the brain the alzheimers is presently doing its damage

eg
if it was in the speech center i would have problems with speech
if it was in the frontal lobes well my family will be in for a bumpy ride

knowing where it was located well i would just like to know so we could be prepared

however all these are hidden and protected by the study 
i have asked to see them after the study is over
but
that usually doesnt happen

i could just have one done myself but they arent readily available outside of research and are quite costly

ill just wait and wonder
_________

10-25-19
ALZHEIMERS NEWS-I AM A ALZHEIMERS RESEARCH VOLUNTEER IN THE BIOGEN ADUCANUMAB STUDY

yesterday i found out that i am a step closer to getting my monthly infusions restarted soon of the biogen aducanumab drug that was in the news this last week
it may be the first drug in a long time that gets approved by the fda to be used in alzheimers disease
this is a big deal for the alzheimers world and me in particular

i meet next month with the ucla folks to discuss my getting back into the treatment study
if i am accepted sometime around january i would start reevaluation with things like medical history neurological exam memory testings mri scans to see if i still qualify to be on the drug
if im cleared and accepted it could be as soon as march when i get my infusions restarted
but
having been through this a lot before i know the research world moves slow

why is aducanumab important
it removes the amyloid most of it that can be seen on a scan from the brain
in those who got the higher dose they had an improvement of memory
thats what we are after either slowing down or improving memory loss

no
it wont stop the disease entirely but it will slow it down sort of like those speed bumps they put in the streets in residual areas to slow down cars from moving too fast
so
aducanumab slows down the alzheimers disease traffic

so
how did i get here from 9 years ago starting as a research volunteer with no symptoms who just wanted to contribute to alzheimers research and who wanted to be monitored
to now

in 2010 i entered the adni 2 study as a normal control group subject
during the evaluation i had memory loss detected on memory testing
i wasnt accepted in the normal control group

i saw a neurologist and was diagnosed with early mild cognitive impairment that has now turned out to be due to alzheimers disease

i was placed on aricept (donepezil) to slow the symptoms down
it doesnt stop the disease it just slows down the symptoms

i stopped working and was placed on long term disability

i then entered the adni 2 study in the mild cognitive impairment group
i did
at least yearly memory testing sometimes more
lots and lots of blood work heck my dna and rna is in a lot of research labs around the world
at least 2 spinal taps
lots of mris of the brain
genetic testing
at least 2 glucose pet scans
at least 2 amyvid pet scans
for those 5 years i didnt get any results of the tests having signed a waiver to be in the study
now
i did have some done in the private world
that werent covered by insurance

the last amyvid pet scan i canceled because i had decided that since the adni study was ending i would not do another study unless it was a treatment study that would help me slow down the disease in my brain

i looked at a lot of the drugs like aducanumab to see how they worked
it seemed that aducanumab stood out from the rest of these antibody drugs against amyloid

if i had done that last amyvid pet scan i would have had to wait 6 months to a year to try to get in the aducanumab study since that was their rule
so
i canceled the last amyvid scan in the adni study in 2015

my first attempt to qualify for the aducanumab study i was turned away since the initial screen showed i didnt qualify
but i can be persistent sometimes
so
later
you see my memory level was abnormal lets say i made a 25 on a test where 27-30 was normal
then over two years i dropped down to a 24 then a 23
i was starting to slide down that path
then
my memory started to climb up into the normal range where it has fairly well stayed since around 2013 or so
so
they test my memory well he dont qualify they said
but
when they got all my medical records to review and followed my memory tests they could see i started out at a deficit
plus i was put on aricept (donepezil) and i started the reversal of cognitive decline protocol and aggressively took care of my health
so
sometime around the fall of 2016 a year after finishing my adni study i began a several month screening process to get in the biogen aducanumab study
lots of medical record reviews lots of memory testing lot of blood work neurological exams ekgs mri scans
then
the last thing after i passed the other screeners after several months was an amyvid pet scan for the amyloid in the brain

if the scan is positive
you are in
if the scan is negative
you are not in

well most of you know i was accepted in the study so that means my amyvid pet scan was positive

so i started 18 months of monthly infusions at first the university of texas southwestern in dallas then later at ucla
as it turns out i was on the sucky placebo for those 18 months
then
i was given 7 infusions of the aducanumab real stuff as part of the long term extension where all participants got the real drug
i am not sure if i got the low or the higher doses
my goal is to find out which i got
im a i want to know person
so
in those 25 months i had a gallon of blood drawn lots of memory testing lots of mri scans and two more amyvid pet scans
up to this point i have had 4 amyvid pet scans in the adni study and now the aducanumab study
i would love to line them up and look at all of them to see what has happened over that time

each visit probably close to 50 of them requires a one way trip of around 2-3 hours
the infusions are a 3 hour event
they have become the top priority in my wife she and is life

i have done what i can to slow this down
the aducanumab appears if what biogen says is true to be a little icing on the cake to slow that skid down that alzheimers slope some

thats all i asked for as i started this journey 9 years ago
if you ask my wife she and i are we happy where we are today
even if im not cured
we would say

you betcha

we cant find a cure because
we need more money
we cant get enough research volunteers like me to participate

to me thats sad

only
you yes you can help us

just look at my story and see where i am today because i volunteered 9 years ago
i
unlike most folks with this disease
i
have some hope for the future

to volunteer go to clinical trials.gov and type in alzheimers disease
remember you can be in some studies even if you have normal memory
find a study near you
volunteer
volunteer

also many alzheimers centers will follow you long term even if you have no symptoms

you can sign up for trial match with the alzheimers association at this link

we need your help studying this disease

to get us money
contact your state and federal congress person tell them we need more money or research
and
of course donate and or join your local alzheimers walk
__________
where do i go from here
one part of me says im done with all of this
like someone who did chemo and radiation and said im done i dont wont anymore done

i may be there now myself
i feel like the aduhelm and other things ive done have bought me more time
im ok with that

i realize the new stuff thats coming along may not get out on the market in time to help me
and
since my amyloid scans will be negative now for maybe 5-10 years i might not qualify for any of these new treatments

i do plan to watch the studies 
i need a tau treatment drug and a inflammatory treatment drug
however
my acceptance for these treatments may be marred by my being treated with aduhelm

a conundrum 

if this is it 
well
im ok with it
ive done my part

the organicgreen doctor