welcome to the organic green doctor blog

i am a family physician who was diagnosed with
early mild cognitive impairment(mci) amnestic type on december 21, 2010
this is a precursor to alzheimers disease
because of this diagnosis i have opted to stop practicing medicine
this blog will be about my journey with this disease
please feel free to follow me along this path
i will continue blogging on organic gardening, green living,
solar power, rainwater collection, and healthy living
i will blog on these plus other things noted to be interesting

Friday, October 25, 2019

alzheimers news-i am a alzheimers research volunteer in the biogen aducanumab study

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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
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

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
aducanumab slows down the alzheimers disease traffic

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 adini 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
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
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
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
my memory started to climb up into the normal range where it has fairly well stayed since around 2013 or so
they test my memory well he dont qualify they said
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
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
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
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
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

you yes you can help us

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

to volunteer got 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

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
of course donate and or join your local alzheimers walk
you are welcome to my walk linked below

we need your help in our fight against this disease

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
donate or join your local walk where you

the organicgreen doctor

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