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-i agree

ALZHEIMERS NEWS-I AGREE

when i read what she said
i turned to my wife she as she drank her morning tea
as she sat
in what i call our spin around chairs in the morning sun
looking out over the courtyard of our condo

i said
did you read that article
did you see what she said
i agree
i told her

please be the drug

thats the title of this time magazine article this week
on
inside one couples experimental treatment to battle
alzheimers disease

lets say before i go further
these studies are available all across the usa to those
who have early alzheimers and mild cognitive impariment
and those who dont have memory issues yet

these as of right now may be the drugs that will slow down
the disease

when reading this article and like this weekend on the
alzheimers panel i was on with other patients
i am definitely no where near the stages that they are at

this couple is on infusion #15
i am on infusion #13

the stuff called aducanumab is an antibody thats given monthly
it was discovered in elderly folks who didnt get alzheimers disease
the lab produced it in large quantities to be used in this study

it works differently than the others you may read about
its more aggressive at removing the amyloid plaques in the brain
than the others
in the initial study the amyloid was removed and the study subjects
memory improved

after the 18 month infusion
for me that will be in september 2018
i will definitely start receiving the real drug for at least 2 more years

i like peter hope that i am getting the real drug
but
like him if not
im ok with it
at least im early in the disease
earlier than he is
my our participation hopefully will make a difference in the
future for others

all this was not available ten years or so ago when my
younger brother was diagnosed
or
15 years ago when my mom was diagnosed
there was no potential treatments out there being researched
that had any promise

now there are quite a few
that work differently to slow things down

there are 2700 of us in the study across the world
i think we may be the lucky ones to get treated so that the
alzheimers disease gets slowed down
we be the first to have this happen
ever

2/3 of us are getting the real aducanumab
1/3 of us are getting the placebo ie saline

i feel like im getting the real drug based on side effects i have
i sure hope so
as
what a difference these 3-4 years of treatment could make in
our lives
my wife she and i

sometime in about 2020 when all this is published i might actually
find out whether i got the placebo or not the first 18 months

some thoughts as i read this article and watched the video
if you are worried or have a loved one with it
you should read it and watch the video

ok so i cried twice
once watching the video
i could see my wife she and i sitting on that bench looking
out at the water wondering what lies in the future for us
and
then again when i read the article

he mentions driving
he cant drive by himself as he gets lost
ive made the decision to not be a statistic
getting injured in a wreck or injuring someone else
or
being one of those elderly alerts that shows up on the interstate
nope
if i have issues
im done
take my keys

he carries the genetic gene the apoe 4 gene for late onset alzhiemers
25% of you carry that gene
it increases your risks about 5 x for getting alzheimers disesase

i carry the apoe 4/apoe 4 gene the double version or homozygous
3% of you carry that gene
it increases your risks about 10-20 x for getting alzheimers disease

to get into this study you have to have a positive amyvid pet scan
for beta amyloid in the brain the hallmark of alzheimers disease
im in the study so you know what that means for my scan

the national institute of health nih has been given a doubling of their
alzheimers research funding
bill gates from microsoft has given millions for research now since
his dad has alzheimers disease
mark zuckerberg from facebook has also agreed to fund millions
for alzheimers research
both are emphasizing the mid level alzheimers researchers since thats
where all the drugs and probably the treatment will come from

so
as they hung this infusion #13 this last week at ucla
my lucky number
under mary easton alzheimers centers guidance
i looked at the nurse
i said
i want the real deal

she looked down at me
smiled real big
and
said
it is
;)

the organicgreen doctor

alzheimers news-#8 done and more

ALZHEIMERS NEWS-#8 DONE AND MORE

we got this now
is what i told my wife she as we were zooming down the 101
turning onto that notorious 405
we are about to enter the mouth of the beast
i told her
i was talking about the traffic not the study i am in

its a 1.5 to 3 hour drive one way to ucla from where we live
how long it takes is based on the traffic and the time of day
i must say for our 800 am appointment we just zoomed right there

when we were going to ut southwestern in dallas for my
aducanumab study to get my infusions
it was usually a 3-3.5 hour drive
so
we dont really complain about the la traffic
well we do but we shouldnt since we get to la quicker
than we did to dallas

so this aducanumab im getting as an infusion is made by biogen
it removes the bad beta amyloid that starts the
alzheimers cascade of events that leads to the brain cell
destruction that causes the symptoms and signs
that you see in your loved ones

the theory is removing the beta amyloid may make a
difference

it seems from what i read this morning that wall street
likes biogens chances of producing a drug that will
alter alzheimers disease
its interesting that sometimes wall street knows things
we dont know

then this morning i read about dr tanzi from harvard talk
about his research on being able to grow a minibrain
in a petri dish that did what they predicted

first beta amyloid was produced
then brain cells died
plaques fomed
then tau proteins unraveled
then inflammation occurred
then the minibrain started dying

this is what the theory of amyloid causing alzheimers says
it just got proven in a petri dish

now
if this aducanumab stuff works like it did in the early studies
the phase 1 study
it removed all of the beta amyoid after a year in all of those in the
early study who had received the aducanumab
the placebo folks had no change maybe just it got worse

so if this stuff aducanumab really works
i and others will get better

as least wall street the stock market thinks it might work

the first results of our study should be out in 2019 or 2020
by then i will have gotten if i got the real stuff which i think
i am getting
at least 3 years of the drug before the results come out

in alzheimers years 3 years is a long long time

another article i read which sort of sucks is that the fda may
make them use it in folks who already have symptoms
who may not be helped as much by this new drug
it
to really be effective like a lot of the new drugs have to be given
to folks who do not have symptoms yet or who like me have minimal
symptoms
so that this amyloid stuff doesnt accumulate in the brain
even i may be too late too far along to get the maximum benefect
from this drug

still
i want to be the first person to proudly hold up this flower
at the alzheimers walks in the future


fox6news.com

its the flower thats reserved for the first alzheimers survivor

support us at our next walk
or
donate and or walk at your local walk

santa barbara walk to end alzheimers october 28th

the organicgreen doctor

alzheimers news-reflections

ALZHEIMERS NEWS-REFLECTIONS

the fall this time of year
i tend to do a lot of reflecting
i guess because thats when all the alzheimers walks occur
when you see a lot in the paper on tv and social media
about alzheimers disease

i start thinking a lot about our family

my mother nell
a nurse who was struck with this dreadful disease
later in life
it was sad to see her deteriorate so slowly

my father charles
he died of heart disease but probably had early alzheimers disease

my older brother charles was diagnosed 3 years ago
he seems to be stable for now


my brother joe
a retired fireman
a retired deputy sheriff
he was struck with the disease much too young
in his early 50s
he was gone in his early 60s
i think about him a lot

when i was diagnosed in december 2010
i really thought in september 2017 i would be where he was with his
disease at that time

i feel so lucky that i am able to sit here today
writing this blog
doing all the things i did when i was diagnosed
7 years ago
i really didnt think i would be able to sit here this morning
and
write
and
drive
and
do all our finances
and
know everyone
and
travel
and
see my granddaughter start to grow up


i feel lucky
maybe its from
all the healthy stuff i do
all the protocol stuff i do
the medicine aricept (donepezil) slowing this down
maybe
just maybe

if i am  lucky the aducanumab i am getting each month
an antibody infusion against the bad beta amyloid in the brain
the stuff that may be the cause of alzheimers
might slow things down some

i know from preliminary studies that if i an not getting the
placebo but the real aducanumab that  most of that stuff the amyloid
will be removed by next year
the question is
will the memory stabilize or get better for those of us getting
this experimental drug
if it does work to improve memory
then its part of the answer
then
ive gained 5 years
which if you have had a love one with this disease like we have
thats a lifetime of time

i think about all the folks i have met over the last 7 years
patients husbands wives sons daughters grand kids cousins friends
all like our family deeply affected by this disease

i know many of you who are reading this blog
your family has been affected also

i will be thinking about my family and yours and theirs
as i and my family and my friends and former patients
do our walks this fall to raise awarenes
and
to raise funds to educate and finance research and encourage
our government to do more

tomorrow here in texas
there will be a time
when i will stop
go inward
think of my family and others
yes i always tear up
then
i will move forward
to do what you have to do to make things better

join us or do your local walks

my walks


alzheimers texas williamson county walk september 23rd


santa barbara walk to end alzheimers october 28th

the organicgreendoctor

alzheimers news-diagnose before any symptoms

ALZHEIMERS NEWS-DIAGNOSE BEFORE ANY SYMPTOMS

this is world alzheimers month
its the 6th leading cause of death in the us
some think its number 4
in the county we are living in it is the 4th leading cause
of death here
there are 5,000,000 folks with the disease in the us
by 2050 there will be 16,000,000 folks in the us with this disease

i read this article from the wall street journal titled
an alzheimers diagnosis-before any symptoms

now i found the article interesting
if you want to know about getting diagnosed earlier
for yourself or your family
you should read this article
heres the link to it

now i didnt need to read this article to learn about
all of this
as
i have lived this the last 7 years

as i have meandered through the private neurology world
then the alzheimers research world as a patient

as i have written this blog researching what i write about

as i have given lectures on alzheimers disease

as i have answered questions from folks at q and a sessions

i have learned all this stuff thats in the article
first hand i must add

i read today about a new research study thats starting up
it will run for 8 years at usc and other universities
folks who are diagnosed with

prealzheimers disease-folks with  no symptoms but with positive tests
or
mild cognitive impairment due to alzheimers disease-folks with mild
symptoms but with positive tests

will be given one of these
an infusion of a vaccine like the one i am getting now at ucla
or
a pill that prevents the bad amyloid from being produced and
deposited in the brain
or
those unlucky ones will get that placebo thing

the question of whether identifying folks before they get symptoms
or when they get early early symptoms
then giving them treatment long term
will it make a difference
we will find out in 8 years

although
studies like the aducanumab study i am in or the crenezumab study thats
on going now will partially answer that question in 5 years

we are on the brink
of finding an answer

in this article all the testing they write about
has oozed over from the research world into the private medical world
such that these tests may get done by a private neurologist
seeing you or a loved one for the workup for memory loss

so in 2010 if you could fast forward that to 2017
if when i went to the neurologist
even before i had a memory test done

i could have had
memory tests which would have showed short term memory issues

genetic blood tests for the early onset or dominantly inherited gene
and for the late onset alzheimers gene the apoe 4 gene

spinal tap analysis for the beta amyloid and tau
these levels become abnormal as the disease progresses

an amyloid pet scan that would show if the beta amyloid was present
if you have even early alzheimers it will be positive
if it is negative you probably dont have alzheimers

we are almost there now to be able to identify if you have it
before symptoms start
these studies like the ones i have been involved in will show
if this is true

now
a lot of thought and preplanning needs to be done
before you have these done
especially if you are in the prealzheimers state

it can be i must say quite overwhelming to get the results
i liken it to finding out
that you have huntington disease
or
that you have a terminal cancer

it requires a lot of soul searching and contemplation
to get these diagnoses
the end result is the same
all ending in death from the disease
some quicker than others

this may be the limitation of folks having the testing
for alzheimers
they might not be ready to know

organizations like the alzheimers texas and alzheimers association
and us against alzheimers can help with the process

you
can take care of your health
can get involved in the support of research and education
by
volunteering with these groups
helping us with our walks to raise money to help the fight

go to the alzheimers texas site www.txalz.org to find the central texas
location of their walks

go to the alzheimers association site www.alz.org to find their walks
located all across the us

we cant do it without your help

my walks


alzheimers texas williamson county walk september 23rd


santa barbara walk to end alzheimers october 28th

the organicgreen doctor

alzheimers news-scan it

ALZHEIMERS NEWS-SCAN IT

today we head down to ucla
to the alzheimers center there
as i enter the 22nd week of the aducanumab study sponsored
by biogen

for those who dont know
the aducanumab is a monoclonal antibody against the
what i call
the bad beta amyloid that accumulates in the brain as
alzheimers disease progresses
causing brain cell death and initiating that snowball happening
that leads to more and more and faster and faster
rolling down that downward decline
that we call the progression of the disease

as the aducanumab binds that bad amyloid
it removes it from the spinal fluid
it also binds to the plaques as they have formed in the brain

in my case
if i am not getting the placebo
knowing my results of my initial amyloid pet scan
its spread over the brain

as it binds to the bad stuff
as it peels it off
it can be like a scab on a wound
there can be some oozing of blood that occurs

this event
can cause headaches and other symptoms
it also if it shows up on scans
gets you removed from the study

those at high risk for this to happen
are those who carry the apoe 4 apoe 4 gene
and
that would be me

i had headaches after the first infusion
but
have not really had any since then

there is just fatique a week after the infusion
i am in that period of time now
its easily helped with a short afternoon nap

as i wrote in this blog about vertigo
that i had
i thought about that this morning as i awoke
i wonder if that episode of vertigo had anything to do with all this
i hope not
since as i head down today for my mri of the brain
i
dont
want
them
to find anything on that scan
if they do
thats it for this study

so we are in the prime time for these bleeds to occur
called aria
amyloid related imaging abnormalities
this will be my third mri for this study
the last two have been normal

how do i know
since they dont give me the results

if its positive for anything i am not allowed to continue
this study

the thinking is that if when this stuff gets on the market
if it works
that even small bleeds will not one day prevent you from
continuing the treatments
but
for this study they have to be discontinued

i personally would not discontinue it if these occur
especially if there is nothing else out there available
to help slow down the disease

also
i will have blood drawn today
the blood is usually tested for the level of the antibody in the body
that is still present since the infusion
and
also it tests to be sure my body isnt making an antibody to destroy
the aducanumab
which would prevent the aducanumab from doing its job

next  up
in two weeks its infusion #7
we will be one year away from the end of the first segment
of the aducanumab study
thats when if this stuff seems to be working
and
if there arent too many side effects
then
all in the study even those getting the placebo
will be getting the drug aducanumab
for another 3+ years

remember
we need financial support to fight this disease
and
emotional support to deal with it

join us as we walk this year

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

yes we will be in georgetown for the above walk
as we walk with our austin friends and family
do join us
come say goodbye to us

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 docotr

alzheimers news-the final answer is....

ALZHEIMERS NEWS-THE FINAL ANSWER IS....

for those who dont know
my story
here is a brief summary

my mother and younger brother died from the disease
my father may have had it when he died
my older brother probably has early alzheimers disease

8 years ago i had a normal memory test when i was seeking my
long term insurance
6 years ago while seeking to be in the normal group for a large
research study called adni i was found to have short term memory loss
on memory testing

this is when i quit working and started the alzheimers drug
aricept or donepezil which slows down the symptoms
but doesnt stop the disease process
if started early it has better and longer effects in slowing these
symptoms

testing done that was positive were

i carry the apoe4 apoe4 gene that puts me at high risk
maybe 10-20 x increased risk of developing alzheimers disease

testing on my spinal fluid reveals i have low beta amyloid
and high tau levels
this was done 6 years ago
this is associated with alzheimers disease

my mri scans and glucose metabolism pet scans are all normal
early in the disease these can be negative but later
they become positive

i have low b12 levels low vitamin d3 levels
high homocysteine levels
homocysteine if elevated is associated with an increased risk
for heart disease stroke and alzheimers disease
maybe

these levels are corrected by taking replacement supplements
under the care of my primary care doctor
my levels are now all normal

i aggressively take care of my health
i follow dr bredesens protocol from his study
reversal of cognitive decline
again under the care of my physicians

so i have been stable now for 6 years
probably no one notices i have a problem
maybe not even my wife she
but i do

i know that i have alzheimers
deep inside my body tells me
that i do

so all of the things i am doing now
i realize they dont stop the disease
it just keeps marching on from one brain cell to the next
they only slow things down some
i know
that in the end this disease wins

unless
i can find something to stop this disease from marching on
so
for the last 6 years i have been keeping a close eye
on all the research thats going on
looking for the drug that might treat the disease
or at least
slow it down significantly

oh theres real promising stuff out there
but
it may be a decade or more away
too late for me

beta amyloid is a protein that accumulates in the brain of
a person with alzheimers disease
many feel like its the cause of the disease
remove it or prevent it from accumulating may
prevent or slow down the disease

so three years ago i spotted the aducanumab study
here is a good review of it from ucsf memory center

so for me
it seemed to be the one i was looking far
it seemed to work in a preliminary study called phase 1
folks with my diagnosis had all the bad beta amyloid
which is thought to be the cause of alzheimers
removed from their brains
ie
their amyvid pet scans for the beta amyloid which showed
beta amyloid throughout the brain
after a year of treatment it was all cleared out
then
these folks memory also improved
thats the true measure
does it make things better

so if this stuff works
it should stop the disease in its tracks
or
at least remarkably slow it now
so
that
a person with it may die from something else
like maybe old age

so
this was where i was at about a year ago
when i heard this study was coming
i knew i wanted to be in this one

i started the five step process last november
requiring multiple visits to work through the steps
some involving my wife she
i passed all the tests
meaning some of them were abnormal
then
last week i went up the fifth step
the amyvid pet scan for beta amyloid in the brain

if its positive
i have alzheimers disease for sure
im in the study

if its negative
i am not in the study
i just got a big time reprieve

are you nervous
anxious
scared
sad
waiting like this

no i said
this has been going on too long
i also have been open and written and freely talked about
all this
i think it has helped
plus
it has helped to get educational stuff out to folks
many who have now volunteered for research studies

now i did cry when i heard i was accepted just to be considered
to be in the study

so
yesterday
as i pulled up my email
there it was from the
alzheimers disease center at ut southwestern

i am sorry to say dr nash
but
your amyvid pet scan shows that you have amyloid deposits
throughout your brain
i knew this was going to be that way
so it means i have alzheimers disease
especially when you add up my history and other testing

thats the bad news
but
the good news is that qualifies you to be in the
aducanumab study

as soon as we get all the official confirmations
we will set you up for the infusions of
aducanumab monthly for 18 months then another 3.5 years if it seems
to work
i realize i also may get the placebo for those 18 months
my chances are 33% i will get the placebo
but
after that i will be able to get the real stuff
either way i am fine with
because eventually i will get the real drug

so in this slide above
on the right is what my scan looks like
all the red stuff is amyloid
then
if i get treatment
in a year my scan will look like that on the left

so am i sad
yes and no
its sort of sad to get this final answer
like being told you got a noncurable cancer
remember alzheimers is usually the true cause of death for those who get it

did i cry
yes i cried yesterday
like when my mom died and my brother died

am i happy
yes i am happy but sad at the same time
i know that i might be able to do something now to slow this down
be involved
with something that may change a lot of folks lives

as of right now
i feel some hope
i am ready to face this new stage in my our lives

i feel like i just won a million dollars
or maybe the lottery

the sad but happy
the organicgreen doctor