alzheimers news-its not my drug

ALZHEIMERS NEWS-ITS NOT MY DRUG

several folks contacted me yesterday asking if the drug that was in the news was my drug
it was on a lot of tv channels and on my newsfeeds yesterday and today

that drug is called ban2401
my drug is called aducanumab
both are made by biogen


ban2401 attacks the amyloid at a particular site called protofibrils
aducanumab attacks the amyloid at a different site
both drugs grabs the amyloid and removes it
both are antibodies against the amyloid given as an injection or an infusion

ban2401 is about 2-5 years behind my drug aducanumab
ban2401 is in phase 2 studies
aducanumab is in phase 3 studies

the aducanumab phase 3 study ends for me after my next 2 infusions in 6 weeks
others in my study are further behind me
there are about 1200+ of us in the aducanumab study

it should be all finished in 2019 with the final results out probably 2020
it could be on the market the following year or two pending fda approval
ban2401 wont be available if it continues to do well until 2021+

dont worry starting in october i begin to definitely receive the aducanumab and not the placebo and will receive it for another 18 months or longer
that should carry me into 2020 when the results come out
if it doesnt work then ill stop it
if it does work then ill probably stay on it since they usually will continue the studies for a long term after that
ie
im covered for now

ban2401 in this phase 2 study didnt work except at the higher doses
it worked best in folks like me with the apoe 4 gene
this higher dose study has only about 200-300 folks in it
the drug in the higher dose not only removed the amyloid
but
the patients memory improved by 30% on the memory tests they used


aducanumab results from nature

my drug aducanumab in its phase 1 study on 100+ patients also worked best at the higher doses
the amyloid was mostly removed
the higher the dose the more removed
also all in the phase 1 study had improvement in their memories
except
those who received the placebo
it always sucks to be in the placebo group

so unlike the ban2401 drug it worked at the lower doses just not as strongly
the folks in the phase 1 study of aducanumab have now been followed for over 5 years
they have continued to have less amyloid in the brain and have showed continued improvement in their memory

my aducanumab drug also has higher side effects at the higher doses
in fact in the phase 3 study they dropped the highest dose because of the side effects
the biggest side effect is micorobleeds that may occur as the amyloid plaques are removed
a side effect that most of us with this disease would readily accept
but
the fda doesnt like them

when my drug aducanumab publishes its results next year or next expect the same hype that the ban2401 is getting now
the difference is that it will be available first for treatment for alzheimers disease

it probably will be used in folks with prealzheimers disease
prealzheimers disease is where many of you are
you dont have symptoms but your amyloid pet scans and or your spinal fluid for amyloid are positive
you just dont know that yet

it will be also used in folks like me with the diagnosis of mild cognitive impairment or those with mild alzheimers
it probably wont be used in moderate to severe alzheimers since by then so much damage has been done that little gain will come from using this expensive drug on those patients

getting diagnosed early is going to be important in the near future if you are going to be able to stop or slow down this disease

in the meantime be aggressive in taking care of your health

the early the better is the rule

so thats my answer to the question
is this your drug

the organicgreen doctor

alzheimers news-thanks bill

ALZHEIMERS NEWS-THANKS BILL

one of the goals of alzheimers researchers besides the main one of finding a  treatment or cure of this disease is to be able to identify folks with alzheimers early in the disease or even before symptoms start

if you can get to folks before symptoms start or before damage has been done
then you have a better chance of slowing or stopping the disease

once the damage is done
its done
its not repaired

thats why you see so many drugs fail
they are started too late
they cant fix whats already been broken
its like a vase dropped from a roof onto a sidewalk
its smashed to thousands of pieces that cant be put back together

so it is with an alzheimers brain

so if i really have alzheimers disease then its being going on for at least 15-20 years
it just hasnt taken over enough brain cells yet to make me have noticeable symptoms
that damage cant ever be repaired even if they find a treatment or cure

so thats why early detection then treatment even if there is no symptoms is so important

ive read for the last 8 years since i was diagnosed
that an early blood test to tell you if you have alzheimers is almost here
they seem to say that each year
its not here yet


now
enter bill gates
one of the richest men in the world
who has given lots of his money away for good causes
basically he got his money off us all who bought his products and now he is giving it to more needy folks

he recently donated well over 100 million just for alzheimers research
now
he has donated 30 million just to find an affordable test like a blood test for early detection of this awful disease
here is his statement

“Imagine a world where diagnosing Alzheimer’s disease is as simple as getting your blood tested during your annual physical.”

well i can imagine it
this money was put into a venture fund
he calls it diagnostic accelerator

we the federal government should be doing this by spending our money for a disease that is programmed to totally break our healthcare system in the near future
it will cost us billions of dollars

thanks bill
for doing what our federal government wont do for us

he is the definition of a philanthropist


on another note
biogen will be presenting data form the aducanumab study that i am in and one similar to it on sunday at a large alzheimers conference
expect to see news reports on their findings

expected approval for use by the fda if its approved will be 2020 or 2021
please hurry since i am scheduled to come off the aducanumab study in spring 2020
i dont want to lose anything ive gained

this aducanumab will not be a cure for alzheimers
it will be a treatment that will slow it down

the organicgreen doctor

alzheimers news-2 more to go

ALZHEIMERS NEWS-2 MORE TO GO

yesterday at the ucla infusion center i received #18 of my infusions of biogens aducanumab the drug that is given iv and is an antibody against the beta amyloid protein thought to cause alzheimers

it removes the amyloid plaques from the brain
it also removes any free floating beta amyloid in the brain
it also activates the garbage cells called microglia that clean up debris that accumulates
so
it works several ways  which is different from the other alzheimers amyloid antibodies being studied

as i explained to the infusion nurse yesterday i chose this study to be in
i identified it when information about the drug was first published
i watched it carefully

i tried to get in one study called the a4 study using another experimental antibody called solanezumab
which was given in this study to those who dont have symptoms but have positive pet scans for beta amyloid the hallmark of alzheimers disease
these folks are called prealzheimers
so i didnt qualify

when i initially tried to get into the aducanumab study i was turned away
that didnt stop me from trying though
i even foregoed my last amyloid pet scan in the adni 2 study i was in for 5 years starting in 2010
since i knew that doing that scan if i tried to get accepted into the aducanumab study would disqualify me since there was a rule that if you had a recent scan you couldnt qualify

once they obtained all my records and prescreening info though they accepted me in the study especially since their amyloid pet scan was positive

so im either prealzheimers or i have mild cognitive impairment thats due to alzheimers disease

hopefully whatever i have this stuff will probably help in someway to slow the disease down
we should have results in a couple of years that will tell us if it does

so yesterday as i left
i realized that i have two more of these left to do
before i advance to the final stage in three months
thats when all of us who want to continue will all get the real drug for another 18+ months
none of us will be on the placebo

now
i dont know if i got the placebo or the real drug
i had a 67% chance of getting the real drug
i was willing to take those odds knowing that after these 18 months
that my chances of getting the real drug are 100%

so yesterday as they ran the saline flush in my vein after the infusion was donei thought
man i wonder how im going to feel in 2 months when they flush that last one

ill be a happy guy for sure

i have now had 18 infusions into my vein on my left arm
the last 3 times they have had difficulty starting my iv in that arm
so they switched to the right arm this time

i was saving that arm for the round two that starts in october
but
i decided yesterday i dont really care where they put it as long as im getting the real stuff
heck i told them they could put it in my neck vein if they wanted

the biogen stock
biogen makes this drug
has shot up a few times recently
i think the financial world knows something about this drug
plus they have a another sister drug thats further behind in the research world in a phase 2 study that is also showing promise

so maybe
just maybe
all the effort my wife she and i are putting in may be worth it

heres hoping

the organicgreen doctor

alzheimers news-3 more and what it is

ALZHEIMERS NEWS-3 MORE AND WHAT IT IS

yesterday at the ucla infusion center i received my 17th infusion in the biogen aducanumab study of either a placebo or the drug aducanumab
aducanumab is an antibody against the bad beta amyloid that is thought to be the cause of alzheimers dieseae
the aducanumab is the most promising drug thats being investigated now to eventually make to the market if it shows promise in slowing down or stopping the disease

yesterday i had a bad headache when i got home which for me is a good sign since thats a major side effect of his drug
if my headache which is still present this morning despite acetaminophen is from my infusion then that would mean i am getting the real drug which is a real good thing
as i discussed with the research director and nurse yesterday if i have side effects thats a good thing
folks like me who have the apoe4 gene are much more likely to have this headache side effect

in fact if i am getting this real drug the dose will be a lower dose to prevent worsening headaches which is caused by microbleeds where the bad beta amyloid plaques are being removed by the drug

a little micobleed i can handle
like i told them
the option for me and others well there really isnt one right now
a little headache and microbleed we will accept

dont worry they do regular mris of the brain to make sure this hasnt happened
in fact i have one in 10 days back at ucla

the only problem is if i were to have a microbleed which means im getting the drug then im out of the study
a bad thing that would be

starting in october all of those 1200 plus folks in the study who want to can continue for another 2 years receiving all of us the real drug and not the placebo with the possibility of getting it even longer if its promising in its effect against this awful disease

so if its approved for use i and we may if we didnt get the placebo get 4+ years of this drug before it reaches the market

for me eg it would have slowed down the disease for me so i would have more cognitive presence here on this earth

thats why i and the others have gone on this journey in hopes of getting some treatment not available elsewhere

otherwise it just taking meds like aricept (donepezil) and its cousins and living a healthy life and taking some recommended supplements
those are your options

its well worth the effort being in this study if it works
if it doesnt work then we have solved whether this approach works or not and science can move in another direction

this week the nih thats the national institute of health published this youtube video on
HOW ALZHEIMERS CHANGES THE BRAIN

if you have it or if you have a loved one who has it or if you are worried you have it
then
watch this video below to see what happens inside the brain

the organicgreen doctor

alzheimers news-predicting your chances

ALZHEIMERS NEWS-PREDICTING YOUR CHANCES

now i know my chances of getting alzheimers disease
its as near 100% as one can get

what about you

my memory has been tested multiple times over the last 8 years
enough that when i do the tests
i know how well i am doing with my memory

over 1 year ago i had a several session evaluation of my memory
to get qualified for the biogen aducanumab study that i am in now

this last wednesday as i wrote in my wednesday blog i did my
1 year followup exam
then
in 6 months ill have it repeated as we end the first part of the
aducanumab study

so
when they started asking me my questions and having me
draw stuff and identify things i knew when i was finished
where i stood with my memory
i dont need no report from the study to know where im at
i know
i have not worsened in the last year
at best i may have improved
but
its not worsening that makes me feel better about things

but
what if you
those of you who have no symptoms
what if there was a way to know if you were going to
get mild cognitive impairment the stage right before
full blown alzheimers
some researchers thinks its the first stage of the disease
thats where i am at right now

but
what if you could be tested

here are the stages of alzheimers disease

prealzheimers   normal memory
mild cognitive impairment mci   mild memory loss
alzheimers disease  memory loss

researchers have found testing that is over 90% accurate
by testing small changes in multiple genes that when they
are all added up can predict whether someone years
before the disease shows up as memory loss
will develop mild cognitive impariment

its called polygenic risk assessment

its available in research now

lets just say that if thats the testing folks would have done in the future
those of you who are really worried
like i was in my 50s
i wanted to know
then
if this becomes available then you could find out
if you will get mild cognitive impairment ie early memory loss

then
what if a treatment for this was available
then
you could be treated years before the disease was
programmed to start
then
you might not get alzheimers

its amazing how it seems that little pieces of the puzzle are
being discovered every day
hopefully
the whole picture can be all fitted together one day
so we can prevent folks from getting this disease

in the meantime until all this becomes available
if you are worried you will get it
then
eat right
quit smoking
exercise
get adequate sleep
be active mentally and socially
control your health like diabetes obesity cholesterol blood pressure
relax
enjoy life
so
you will be ready when the treatment gets here

the organicgreen doctor

alzheimers news-dontcha remember

ALZHEIMERS NEWS-DONTCHA REMEMBER

well thats sort of what im being asked to do today
see what i remember

i know i wrote after the alzheimers panel i was on a
couple of weeks ago
dont use the word remember is what those affected said

well today i have to test my memory skills
at the one year follow up for
biogens aducanumab research study at ucla
aducanumab is an antibody against amyloid which attaches
itself to the amyloid and removes it from the brain
its given as a monthly infusion

one of the indications that it is working is
an improvement or no change in ones memory

to get in the study
you have to undergo a lot of testing
labs scans neurological exams and memory testing

so one year ago there was a lot of memory testing
memory testing is the part of the research study that
i dont like
i call it sort of torture testing

if you have any memory issues
its bothersome real bothersome to do the memory testing

so one year ago the original testing is the baseline
memory testing that future testing
gets compared to

i had memory testing about 6 months ago
it was not as comprehensive as the beginning testing

from looking at the schedule today i probably will
have about 2 hours or so of memory testing

if this stuff is working
if i am getting the real drug and not the placebo
my memory will not have worsened
it may not  have improved
it may have just stayed the same
which is acceptable to me

i read today that alzheimers disease may be like hiv
you will be able to take medications that will stabilize
the disease so that it doesnt takeover the brain
thats ok with me
thats acceptible

my guess
my memory hasnt changed
its hard to tell if it got better since im so early into the
disease as it wasnt bad to begin with

ok i admit trump had a better moca memory test score than i did
on my first one

heres hoping i do remember things

also
i have to have a repeat liver enzyme test
they were slightly increased two weeks agao
i think because of the excessive acetaminophen and ibuprofen
and naprosyn along with some hydrocodone i took while
fighting the flu and the dental abscess
i do expect those to have settled back down to normal
heck
when i had my molar tooth removed last week and
had a bone graft done
i opted to skip the pain meds completely
they wanted me to alternate the ibuprofen and acetaminophen
i smiled
i didnt do that
i did take a couple of pain pills the first night but none since

there is nothing i want to interfere with me being in the study
nothing
it has the potential to be life changing for my wife she and i

so
im one year in
i have at least 2 plus years to go
in 6 months i will definitely be getting the real drug
aducanumab

i think my remembering is ok

the organicgreen doctor

alzheimers news-i got a 10

ALZHEIMERS NEWS-I GOT A 10

this week i got my 10th infusion of the
biogen aducanumab
well i think im getting the real stuff
but
i might be getting the placebo

im thinking the real stuff

our last trip took over 3 hours to get there
the last 2 hours was spent stuck a lot in traffic

this time we left at 5am
we mostly avoided the bad traffic on the 405
think austins 35 at its absolutely worse
thats the 405 during rush hour
maybe worse

we made it in over 2 hours
we arrived 2 hours or so before our appointment
which was ok with us
we decided we would rather zoom through traffic
than be stuck in that not moving traffic

we just went on a long hike around the campus
the first we have done
by the time im finished with this study
if i am ever finished
since
many times they will extend the study more long term
we will know the campus and the area real well

we also save our weekend grocery shopping
since there is a large grocery chain just
across the street from ucla
for those in texas think maybe nicer than
a real nice heb

so we shopped then took a lengthy hike
then on to the infusion center
it seems that every time i go now
things just get more streamlined

i arrive by 1000 am and i am out of there before 100pm

i am now at the point of the infusions where
i just get checked in
see the research doctor
wait on the infusion to be processed
they do the iv and hook it up
it runs in over a hour then they flush the iv with saline
for 15 minutes then im out of there
no labs or other testing
thats the way it will usually be from now on
usually
except for the annual visit coming up in march
and
the 6 month visits

in september 2018 i will have the final visit for the
first phase of this study
ill get the last infusion of the mystery stuff
is it real or not
then
if i opt to i can do another 42  months of infusions
of
the real guarantee you gonna get the real stuff infusions
i want those for sure

so
i see in the future this little dim light thats aflickering
i see the hope light way out there
ill know for sure im getting the real stuff

one thing i have noticed after this infusion on tuesday
is a persistent headache that is requiring acetaminophen
twice a day to control

remember
headache is a good thing
it means i might be getting the real stuff

being a apoe 4/apoe4 genotype i am more likely to have
small micro bleeds where the bad ass beta amyloid is removed
which is the usual cause of the headaches

heres hoping thats why

also if im getting the real stuff
in late 2018 when they do my amyvid pet scan
the pet scan for the bad ass beta amyoid
remember it had to be positive to get in this study
if i am getting the higher dose stuff
then my scan will be negative or almost negative
for the bad ass beta amyloid

of course like i have written before
i will never get to know if i was getting the real stuff
aducanumab the first 18 months of the study
and
i will never get to see any of my amyvid pet scan results

i can live with that
as
long as this stuff slows it down

as a reward on tuesday
we elected to leisurely drive the pacific coast highway
thats the hwy one from los angeles back to santa  barbara
it goes through the pacific palisades then malibu
then through mostly almost uninhabited areas

i found it relaxing as my wife she drove
so i could do all the sightseeing without running off the road

rank this visit
a 10 for sure

the organicgreen doctor

alzheimers news-is there room

ALZHEIMERS NEWS-IS THERE ROOM

thats the question raised by a recent rand corporation study on
what would happen if a treatment for alzheimers disease
came on the market

well that very likely will be a reality in less than 5 years
if some of the drugs show promise in fighting this disease
get approved for use

biogen which makes the aducanumab drug i take each month
sponsored the rand corporation study

the result of the study i am in will come out in 2019
if the results are promising the drug will be approved
soon after that

they probably will go after folks who have changes in the
brain already of alzheimers they just dont know it yet
the prealzheimers or prodromal state
ie normal memory with positive scans
and
those like me with early symptoms

if you are too far long with the disease its probably too late
to get treatment

now recently in this blog i wrote titled
alzheimers news-can we afford it
that we basically may not be able to afford these treatments
at the same time we cant afford not to do them

lets say in 2020 a new treatment becomes available
there are literally thousands of people no thats millions
in just the us who will fit the criteria for treatment
eg
me when i was 55 i would have had a positive scan
thats when if not earlier i would have wanted to get treated
to get maximum effect from the drug

so what would it take to get diagnosed and evaluated
to qualify for treatment

first
you go to a doctor usually a specialist like a neurologist
a geriatrician or psychiatrist
its usually a neurologist
there arent enough of them available
now remember we are talking about several million folks
needing to see the specialists
can you imagine the back load of appointments just to get
seen
then
the work up will include probably the amyvid pet scan
for the beta amyloid
its the stuff that the aducanumab removes

remember we are talking millions of people here
after finally getting into the neurologist
now need the amyvid pet scan
there are not enough scanners that do this in the us
to do all the scans that will need to be done

can you imagine the delay its going to take to get
your diagnosis

then
this stuff will probably be given in infusion centers
the ones where things like
chemotherapy is done
infusions for ms connective tissue diseases like rheumatoid
lupus ulcerative colitis psoriasis etc

you can see the backlog that will build up just to get the infusion
whenever you finally get diagnosed
then
especially early on
will there be enough drug available for all these folks who
will need treatment

the rand corporations conclusion is that it will probably take
18 months to get seen and get diagnosed before receiving
treatment

as those of us know who are familiar with alzheimers know
those two years are a long time in alzheimers time

it is predicted by the study that starting in 2020 over the
next 2 decades over 2 million people will develop alzheimers
waiting for diagnostic studies and treatments

we will be at the finish line but we wont be able to cross it

i feel like those of us needing treatment
are like charlie brown when he goes to kick that football
lucys gonna pull it away at the last minute

the organicgreen doctor

alzheimers news-theres is more of it now

ALZHEIMERS NEWS-THERE IS MORE OF IT NOW

i read this article
well several articles in fact
about how alzheimers disease is increasing in numbers
its starting to steamroll its self to the top of the charts
not a good thing

this week
on wednesday

i boarded a plan in los angeles to fly to dallas
to get my infusion #4 of aducanumab or placebo
in the promising biogen aducanumab study
i have 14 more to go before a decision is made to continue
the study for another 42 months
i hoping for good results in 18 months and that we all in the study
can get the real stuff for the last 42 months

well
so
i had a lot of time to think about alzheimers disease
about those articles
about my family tree
about what this all means for all of us
my family and yours in the future

i thought about my family tree
i have tried to piece our history our dementia history
from talking to siblings and cousins who remember stories
of our family
some i remember

what
for our family
both parents definitely my mom and maybe my dad had alzheimers disease
my younger brother had it
my older brother has it now
i am early in the process
so far
no other sibling has shown any signs or symptoms
i will say they are all doing the aggressive stuff you need to do
to slow it all down
take care of your health
eat healthy

then i moved to my moms family
all 5 of her siblings had some type of memory loss
her mother had dementia in her 60s
her grandfather had dementia
thats as much as i know of her familys medical history

my fathers family had some dementia
his sister died from it
his mother had dementia when she died
i dont know more than that
his dad died from other causes in his 60s

so why would our family have all this in our medical family tree
well
i thought about it
what would make this happen

first i know that i have the double apoe 4 gene
so i got one from my mom and one from my dad
so both sides of the tree carry this gene
double it and the risks go up 20x
single it and the risks go up 5x

high cholesterol is rampant in both sides of the family
i call it the heart attack stroke kind of cholesterol
now
we know that also it may be the alzheimers kind
whats bad for the heart is bad for the brain

our family tends to have high bad ldl cholesterol
and
high triglcerides
diet places a part in this as some of my siblings on a
plant based diet have reduced their numbers to normal

i have come close but require a statin to get them down
to where they need to be

high blood pressure is also rampant on both sides of the family
both parents had it
many siblings have it

having not well controlled blood pressure
the way i think of it
is
you know how you have a big roll of bubble wrap
the kind you can pop
well thats the brain or the heart
well
not controlling your blood pressure or cholesterol
just gradually pops those little bubble wrap cells
gradually making the whole wrap unusable

well
in my mind
thats how i visualize the brain when you dont take control
of your lipids and your blood pressure

obesity and diet
both parents were overweight
some relatives are and some arent

diet a typical southern diet is not a good one
now for a lot of our life we commonly ate a lot of
vegetables etc but its what we cooked them with
lard etc was not necessarily good for you
eating off the farm is usually a good way to eat
though

so
all these factors
genetics well we cant change that
high cholesterol
high blood pressure
obesity
diet
maybe environmental factors
these all contribute to this high incidence
in our family

if you notice
the only risk factor that our family cant change
is the genetic one
the rest
is totally under our control

so i thought about all this this week
as i read how the incidence in the us and the world
is starting to skyrocket
as we start defunding research on this disease that
will be the number one killer in the us soon

we and all of us
can do something to slow it down

bug your congress person
help raise money
take good care of your health

support
our alzheimers walks to help raise money to fight this disease

we will be doing the
alzheimers texas walk in georgetown texas
on saturday september 23rd
team name is organicgreendoctor

i also will have a team in the
santa barbara walk to end alzheimers 
on saturday october 28th
team name is organicgreendoctor.com

join us

the organicgreen doctor

alzheimers news-your questions answered

ALZHEIMERS NEWS-YOUR QUESTIONS ANSWERED

i get questions about alzheimers frequently after posting the
alzheimers news segment each week
from emails
from facebook messages
after doing my talks on alzheimers disease

in fact
my favorite talk i do
is to simply stand up and answer questions from the audience
families and patients and friends just want answers
many cant get them by reading the internet and asking their
medical providers

i have been through this with two family members
granted i wasnt there for the day to day caregiving that
is so trying on families

i have spent hours and hours over the last 6 years reading
about alzheimers so i have become well versed in
alzheimers and with what research is going on

now
that i know i truly have alzheimers disease
i can now truly speak as someone who has the disease
albeit very very early in the process
but
i know that it can suddenly take off
and proceed rapidly
so
thats why my day to day decisions are based on what could happen

i may be lucky
in that this aducanumab might be the reprieve im looking for
the next 5 years will tell if it really works as advertised

after last fridays blog
i got tons of comments and questions

i was asked and this is a frequent one
what can a loved one do if their affected loved one is more advanced

eg
one person wanted to know if their spouse would qualify for
this study
i asked questions about the spouses health
it was obvious from the answers and the persons medicines
that they were more advanced

i try to be honest with my answers
because i feel like thats what people really want and i would want

i told the asker
no they wont qualify they are too advanced
there really is not anything to do to stop it
my advice is to maximize their health
keep them as mentally physically and socially active as long
as possible
provide love and comfort
and
take care of yourself the caregiver
thats the one that most spouses or kids forget

i was asked several times where and how to get the amyvid pet scans

my reply
they are available at multiple sites in texas
probably most states do them
they are not paid for by insurance companies
they cost between $3500-$5000
i got mine free via the study

here is a link to my blog about how to get one free
if you meet the criteria
http://www.organicgreendoctor.com/2017/03/alzheimers-news-good-ideas.html

not everyone with memory loss needs these
i consider them the icing on the cake test

a memory loss patient should see their primary care provider
or a neurologist for a stepwise complete workup
like
a good medical history and physical looking for causes
basic screening labs
good memory testing
maybe an mri of the brain

most folks can stop there and not need more information
eg
my two brothers got all this done
their diagnoses were able to be made from this workup
an amyvid pet scan would have been a waste of time and money

my mom fell and hit her head and had a ct scan which showed
diffuse shrinkage of the brain
this is caused usually by alzheimers disease

but in cases like mine since i was so early
i had

the genetic tests
note i will write more on those tomorrow on my blog

the spinal tap for the biomarkers amyloid and tau
are helpful in making sure of my diagnosis

then
like i wrote above
the amyvid pet scan was the icing on the cake
now i certainly know
what i have
what will happen if i dont do something
since i have personally seen what happens

another question is
where can i get tested or where can i get involved with research
all primary care  providers can do this testing
if they are not interested seek out a local neurologist or memory care center
like the one i go to

if i was still in practice i would do these workups myself
since i now know more about how to do it now and how to interpret them

if you are interested in being in research
or
if you are interested in being followed on a regular basis like annually
to be closely monitored

in texas
the tarcc group at this link
http://www.txalzresearch.org/volunteer-for-alzheimers-research/

they will start seeing you at 50 years old
even if you have no symptoms
they will do a neurological exam memory testing baseline labs and maybe
an mri
your data is kept in research and should not reach your medical record
why
read my blog tomorrow

for someone who has a family history and is worried about getting it
this is a good thorough way to do it
at no cost to you
anonymously from the medical records usually

other states may have similar programs at most of their
universities memory centers or alzheimers disease centers

for the study i am in
go to
clinicaltrials.gov
type in aducanumab
then type on the studies they are recruiting for
find the nearest location
note this list is not complete
it doesnt have the ut southwestern site listed

here is biogens site about the aducanumab study
https://www.engageandemerge.com/

so remember
if you are worried get evaluated
if you have a family history or want to be monitored do the
monitoring as above
if you want to contribute
volunteer for a study and or donate to the local alzheimers groups
the biggest obstacle to getting alzheimers research done is
money and volunteers
if you are a caretaker
take care of yourself

always feel free to ask me questions on this blog
i screen the questions and post them and my replies
i will answer messages via facebook
i answer lots of questions at my alzheimers talks

my next presentation is at
the 5th annual alzheimers symposium
mayborn convention center
temple texas
friday april 28 2017

i will do my talk that day
then
answer questions after the talk from the audience
then
i will hang around for awhile if folks want to ask
me questions one on one


the organicgreen doctor

alzheimers news-round three

ALZHEIMERS NEWS-ROUND THREE

the name of the study is
the aducanumab study
sponsored by biogen

this is the study that alzheimers folks are keeping
their eye on

it could be the one
we are waiting for

i sure hope so

the bad beta amyloid that is
thought to be the cause of alzheimers disease
accumulates in the brain causing brain cell destruction
ie
alzheimers disease

stop this accumulation you might stop alzheimers disease
or at least slow it down

so they isolated this antibody to the bad beta amyloid
from old folks who for some
reason didnt get alzheimers disease

this antibody was named
aducanumab

it goes into the brain when given as an infusion
binds to the bad beta amyloid and removes it

it also removes the plaques that form in the brain


nature.com

here on the left are beta amyloid scans called amyvid scans
done on folks before the study started
all that red stuff is beta amyloid accumulation
then
on the right are the same folks scans after receiving
the infusions of aducanumab after several weeks

you can see the 10 mgm dose completely cleared the amyloid

only the folks who got the placebo
the fake stuff
didnt change

this removal of the amyloid also correlated with
an improvement in memory

these scans are from the small initial phase 1 study

now i am applying to get into the big phase 3 study that is being
done on several hundred folks

if i get in
if i get the real stuff and not the placebo
my scans should go from abnormal to normal looking
in just a few weeks
my alzheimers will be delayed or stopped in its tracks

this is why we are so excited about this study

so today
its round three
we make the 300 mile journey
to the ut southwestern alzheimers center in dallas
to have
several memory tests
and
the baseline mri

if i pass these tests
ie
my memory is still off
my mri shows nothing bad like stroke tumor masses etc
then i will have an amyvid pet scan soon like those above

if the amyvid scan is positive
then im in the study
that means i have alzheimers disease as sure as you can be

then
i will start the infusions

this all has to happen in the next 2 weeks

lets just say we are excited today

the organicgreen doctor