alzheimers news-why i did it

ALZHEIMERS NEWS-WHY I DID IT

thats me giving a talk on alzheimers in austin texas a few years ago
afterwards folks were allowed to ask questions for about 30 minutes
it is also the picture the beingpatient.com website used when they posted my almost 1 hour interview with them
click on the link here or above to watch the video of the interview or read the interview transcript

I was reinterviewed by them again last month about the apoe4 gene
the interview veered off into her asking lots of questions about my story 
she said she was intrigued with my story 
would i mind writing a couple of articles for them

i thought what i would do would be to write the article first on my blog then send it to them 
where they will edit it before its published

if you are in the alzheimers world or dementia world this website is one you should be following
it will keep you updated on what is happening in that world

one topic they wanted to know about was my experience with aduhelm and what are my next steps

here is my draft of that first article

aduhelm or aducanumab is a monoclonal antibody that when given intravenously binds to amyloid plaque and removes the plaque from the brain
doing this in theory should slow down memory decline

in the theory of alzheimers amyloid plaque accumulation in the brain may be the cause of alzheimers disease
it also entails tau tangles and neuroinflammation
aduhelm attacks mainly the amyloid plaques

i first read about aduhelm when it was in phase 1 clinical trails about 12 years ago
when they reported out the first results showing that most of the measurable amyloid plaque was removed at one year of treatment and that the study subjects showed a slowing of memory decline or no memory decline i followed the studies closely

when the aduhelm clinical trials were seeking study subjects i initially applied online but was turned down since my memory had returned to normal levels since i was diagnosed with mild cognitive impairment due to alzheimers a few years earlier

later i applied again and after a several months evaluation of labs extensive memory testing amyloid pet scans genetic tests mris and an extensive review of all my previous memory testings and medical records i was accepted into the study 
my amyloid pet scan was positive for amyloid plaques

initially i was at the university of texas southwestern medical school where i received my first infusion in the study in 2016

i moved to california in 2017 so i transferred my clinical trial participation to ucla
after 18 months the trials were abruptly stopped with no thought of restarting them
it was a gut punch for those in the study
that is when i found out i got 18 months of placebo
another gut punch
i just knew i was getting the real drug
i knew though when i signed up that i might get the placebo
a chance you take in doing clinical trials

lucky though
sometime after the pandemic biogen decided to restart the study
that is about when they did a cross over where i was placed on the real drug aduhelm

one of the biggest side effect of taking aduhelm is aria or amyloid related imaging abnormalities that manifests itself as edema or bleeding
the incidence is small
it can be severe though

dr daniel gibbs in his book and blog a tattoo on my brain describes how he was in the study 
like me he is a homozygous apoe4 apoe4 carrier which put us at a higher risk of these bleeds
i didnt ever have a bleed but he did
a massive one
he almost died
his book is a good read if you are in the alzheimers world and he also has a documentary about his journey 

when my dose was increased to the maximum dose i did develop a severe ocular migraine with an aura where my visual field was overtaken with waviness like crinkled up tin foil
it lasted about 1 hour
it was associated with elevated blood pressure headache and nausea and fatigue
the headache lasted for several days but was mainly controlled with acetaminophen

because of this my aduhelm was discontinued for about a couple of months
i had a series of mris that were normal
the aduhelm was restarted

i continued to have these headaches each month but they gradually got better
my last few didnt really keep me from doing things

now that i am off the drug i no longer have these headaches

luckily i had one similar to this 10 years before so i knew what it was

i always say you have to want to be on these experimental drugs
it would take 6 hours of travel and 3 hours at the infusion center to get these infusions
there were a lot of stop and go with this study
interesting is that they had very few folks drop out of this study
we all understood this may be our only chance to take a drug that can alter our disease
whatever it takes is what many of us said

how i found about this drug study initially is i stayed in contact with the alzheimers research center at the university of texas southwestern who notified me when the study was offered there
i also read several alzheimers newsletters and get regular google feeds on alzheimers

one of the problems with aduhelm is that biogen tried to rush through its clinical trials to get it approved by the fda
they appeared to use some political influence to get it approved
this left a bad mark on the drug that it couldnt overcome

i was interviewed by the ny times about my involvement and how i felt about its difficulties getting approved
i said it smelled bad

sad thing is that after getting 34 months of aduhelm in the study all the measurable amyloid is gone from my brain
it did its job

it is now off the market since its cousin leqembi had a better record and is approved by the fda
it is also owned by biogen so now its not available but leqembi is
 
why has my memory gone from the mci range in 2010 to now being in the normal range

i think its
 
doing all the healthy things one should be doing especially controlling my blood pressure cholesterol and weight staying active mentally physically and socially getting adequate sleep eating a healthy diet like the mind diet maintaining a normal weight not smoking not drinking alcohol and generally living a stressful free life

taking aricept or donepezil as soon as i was diagnosed 14 years ago
studies show the earlier you start the drug the longer it slows down symptoms
folks started early on on aricept live longer

taking aduhelm since aduhelm probably slows down memory decline maybe although not finally proven since all the studies havent been completed

all my measurable amyloid plaque as of several months ago is gone from my brain as seen or should i say not seen on my last amyloid pet scan

now what do i do 
now what do 100s of us who have been treated and had our amyloid plaque removed
what do we do now

well 
we wait till medicine and science tells us what to do next
when do we get retreated
do we need a maintenance dose

as of now medicine in science doesnt know what to do
we wait

we also generally will not qualify for any new clincal trials since we are amyloid plaque negative
you have to be amyloid positive on an amyloid pet scan to qualify for new clinical treatment studies

we all need our tau and our neuroinflammation treated but those treatments are in clinical trials and we wont qualify to be in the studies
most of us would jump at a chance to get in one of those studies
i know i would
ive tried already
sorry they said you dont qualify

so
we wait 
all hundreds of us waiting to know what to do next
knowing if we wait too long we will be to gone to qualify for any treatment since if you wait too long the drugs wont help

for me
i am doing all the healthy things i am suppose to be doing
i still take my aricept each day
i wait

if you are in the santa barbara area join us for our walk to end alzheimers at the link below
or
join a walk where you live
here is the link to our team organicgreendoctor to join or donate 
see you on saturday november 16th at chase palm park 

the organicgreen doctor