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-its near you

ALZHEIMERS NEWS-ITS NEAR YOU

yesterday
i went to the alzheimers disease center at ut southwestern to get my
third infusion of the aducanumab drug from biogen
if it works or if it partially works
it will slow down the disease some

yesterday
i discussed with the center that i would be moving to santa barbara soon
they said i may have the option to switch to a site in california that is
participating in the study
eg like ucla

so
we are thinking about changing if its approved by biogen
if not
we plan to continue going to dallas each month to get the infusions
this study
for me
is too important not to do all i can to get this drug
it will be the only chance i have
to get something to help slow down the disease
since
when the drugs that are in the works now get here
my disease may be too far to take something to stop it

ie
now is my time
i have to maximize things

all this made me think of
those who have contacted me in the last month
via this blog or after my talks or in random encounters

the jest of what that say is
my family has alzheimers disease
i dont have any symptoms
i know i am going to get it one day
can i get in a study like yours

my answer is yes

for research folks are classified as
prodromal or prealzheimers-they have normal memory but have a positive
          scan called amyvid for the beta amyloid and positive spinal fluid
          levels of beta amyloid and tau
          this means they will probably develop alzheimers disease

mci or mild cognitive impariment due to alzheimers disease-they have
          mild memory loss and these biomarkers ie postive amyvid scans
          and positive spinal fluid levels of beta amyloid and tau proteins
       
alzheimers disease-they have more advanced memory loss and their
          biomarkers are positive

then
alzheimers disease is either mild moderate or severe
          or early mid or late

most of the new treatment studies are looking at
prodromal
mci or mid cognitive impairment
mild alzheimers

these are the three levels that may benefit the most since
there is not as much damage done yet in the brain
so the treatments may work to slow down or if we are lucky
to stop the disease

so those of you who have asked me
is there one of these studies i can get in to get treatment
even though i am not having symptoms

yes there is
you have to willing to know that you will probably get alzheimers

most of my readership lives in arkansas  texas  california

so if you live in these states
its in your family
you want to know if youre next
you want to be proactive and get pretreated
then
heres the links below for each state

there are 3 companies
there are others that are on the way

lilly  solanezumab-the study is called A4

genetech/hoffman-la roche  crenezumab-its the drug that was on
          60 minute and pbs recently

biogen  aducanumab-this is my drug    it will be doing studies soon on
          those with prodromal alzheimers disease

you can go to www.clinicaltrials.gov to search for these studies
or
click on the links below

in arkansas
look under arkansas near the bottom
there are three sites
jonesboro little rock and fayetteville

crenezumab study


in california
look under californa near the bottom of the page
there are multiple sites

crenezumab study

solanezumab study or A4


in texas
look under texas near the bottom of the page
there are multiple sites

crenezumab study

solanezumab study or A4   

if you are interested in being proactive
call the sites even though they may be listed as
not recruiting yet
sometimes they really are

good luck

our moving sale is happening tomorrow
rain or shine
everything is for sale
unless its a heirloom item that stays in the family
or
if the new homeowner has bought it
or
if we can stuff in our two cars

if you are a lover of chicken stuff or donald duck stuff
there is a lot to pick from

everything is priced to sell

here is the link to our rain or shine moving sale on saturday may 20th
country n moving sale

the organicgreen doctor

alzheimers news-todays the day

ALZHEIMERS NEWS-TODAYS THE DAY

two weeks ago the alzheimers vaccine study on solanezumab came out
the results werent promising
however there was a 15% improvement noted in those folks
with mild alzheimers disease
this vaccine an antibody against beta amyloid doesnt go after the
plaques that form from beta amyloid in the brain
my drug does though
also
it appears that for this stuff or any new alzheimers drug to be
effective
it has to be used in folks like me with minimal disease
or
those folks like some of you that have prodromal alzheimers
ie
you just dont have symptoms yet but the disease process is
going on and has been for several years

once you get full blown alzheimers disease it may be too late
for a treatment

the solanezumab study called a4 results will be out in a few years
its on prodromal folks

if any of  you saw the 60 minutes show on alzheimers disease
that was a story of using one of these drugs called crenezumab
in a large extended family of folks in colombia who will get
alzheimers since they carry the dominant alzheimers gene

this one works more like the one thats being used in the study
i have been trying to get in

well
todays that day
i passed hurtle number one
i got past the nurse screener
i have been accepted to enter the prescreening part of their study
on
aducanumab

this one i think is the most promising of all the drugs so far

npr article on aducanumab

this last week at a large alzheimers conference in san diego
the data from its phase 1 study was discussed

in folks with minimal symptoms
like me
not only did the beta amyloid get removed from the brain plaques
and the cs fluid around the brain
but
folks memory stayed the same or got better
the placebo folks who didnt get the drug
their memories deteriorated

there is a memory test commonly used in doctors offices
called the mmse
you get a score of 0-30
placebo folks deteriorated almost 2 points
treated folks didnt change or declined much slower
based on which dose of the drug they got

so for me i would accept no change or mild decline

the alternative to doing nothing
well
thats not good
its real bad

so today i get started on several more hurtles

today
my wife she and i make the trip to dallas
to the alzheimers center at ut southwestern
to start my journey
one i have been hoping for for 6 years now

it starts with an interview with the research nurse
asking me and my wife she lots of questions
all 1000+ of us in this national study go through the same thing

then
this visit or maybe the next visit if i pass this one
i get a lot of blood drawn
240 ml or 8 oz

then
i undergo that torture test
called neuropsych testing
which includes the mmse and other memory tests that the study is using

then
i undergo a neurological history and examination by the
studys primary investigator
a neurologist

then
this data is sent off to biogen the maker of the aducanumab drug
to decide if i go further in the study

if declined i will have an amyvid pet scan done privately
and
will move on with my life
looking for a another promising treatment
as
the clocks ticking on me

if i am accepted
i move to a spinal tap for beta amyloid and the tau protein
mri
genetic testing

if i am accepted based on these results
then i get the final test
the amyvid or amyloid pet scan
it will tell if i have the amyloid accumulated in the brain
if positive
im in
and
that means i know i have alzheimers disease for sure
well as sure as one can know without an autopsy of the brain

then
i will start infusions monthly
of a placebo ie water
or
the real deal

i have a 67% chance of getting the real deal
i have a 33% chance of getting the placebo

sorry i want the real deal
but
if i dont after 18 months or so they will switch me over to the real deal
for a total of 4 1/2 years of infusions

i do realize since i have the apoe 4/apoe4 gene
i have an almost 40% chance of having significant side effects
mainly headaches if i get the higher dose of the
drug
luckily few people have had to stop the study from these side effects

if it works
its all worth it

the real deal please

the organicgreen doctor

alzheimers news-bummer well maybe not

ALZHEIMERS NEWS-BUMMER WELL MAYBE NOT

last thursday
thats thanksgiving morning
i was sitting on the front porch where we were staying in nola
thats new orleans
i was drinking my strong morning coffee
since it may slow down alzheimers some
sitting in the morning sun on the cool morning
watching neighborhood folks walking by
some with their dogs
good morning i said
they return the same greeting
warm feeling inside and out i had
then
i started reading my news feed on my cellphone
there it was
solanezumab results are in

i got clammy sweaty i was
my heart rate jumped some
i knew what these results meant for those
with alzheimers disease and those who will get the disease
life changing

there was the word that seemed to hit me in the face
disappointing
the results showed that the drug use in mild alzheimers patients
was disappointing

i felt like i had been slapped upside the head

all the joy i had being in nola
went down the drain
i sat there for a long time
a long time
even let my coffee get cold


then
i felt real anxious anxiety it was
so
i went for a walk by myself in the neighborhood
nearby was a large cemetery
that stays locked at night
but lucky for me i guess the gate was open
so
inside i went
i just felt like i needed to be there
i slowly walked past the above the ground graves
looking at the dates
looking at when the person was born
when they died
wondering what they died from
some died young
some died old
some probably from trauma
some from probably infections
i wondered how many of them had dementia
had alzheimers disease
was it as bad back then

it when i think of it was strange that i was attracted to
that cemetery since i had toured it before

then
i gradually meandered my way back to our place
where we were staying
i felt melancholic all day

then
the next day i got a bad stomach bug
i think the drugs i took for the severe nausea masked
my melancholy
then
after a couple of days the melancholy gradually wore off
thanks
somewhat
as i read more and more about the drug study
and other similar ones
that are ongoing
one of them i am waiting to enter soon

there are 3 drugs called alzheimers vaccines
thats what i call them
they are antibodies against the bad amyloid that is thought to
cause alzheimers disease
they go into the brain and remove the beta amyloid
if it works the persons memory gets better

solanezumab
made by lilly
the first to publish results officially on december 8th
it will show when given to folks with mild alzheimers disease
it didnt work

the more i have read from alzheimers experts
i realize like them that the drug was given too late in the disease

its like giving lipitor a statin to someone with a stroke or
a heart attack
well it aint going to help them
but if given months to years earlier they wouldnt have a stroke or
heart attack
so
the thinking with these alzheimers vaccines

if its given before symptoms start
or
maybe given when
symptoms are minimal like the statin used in stroke prevention
then it might prevent alzheimers disease or at least slow it down

so
solanezumab is being used in a study  called the a4 study
in folks who have no memory loss but who have
a positive amyvid pet scan for the bad beta amyloid in the brain
those results should be out in five or less years

crenezumab
made by genetech
its a similar drug that works the same
but is slightly different
it if you didnt see it was featured on
60 minutes last week
if you are remotely interested in a cure for alzheimers disease
click here to link the video and story 
read and weep
i know my she and i both did

basically in the colombia study the drug is given to folks who have the dominant gene
for alzheimers disease but do not have symptoms yet
they all will get alzheimers disease
they will get the drug for 5 years then the results will be published
if it works it will delay or stop alzheimers from occurring

aducanumab
made by biogene
thats my drug
thats the drug study i have been trying to get in
it works similar but slightly different from the other two

it will be given as a monthly infusion for 4.5 years
to folks like me with minimal symptoms but with
positive memory tests   positive spinal tap results   positive apoe4 gene results
then
finally a positive amyvid pet scan
the scan that shows if you have the bad stuff beta amyloid
ie you are going to get full blown alzheimers
then
you will be given the drug monthly over the above time period
or
get the placebo

i passed the first test
a screening of my medical records my memory tests my apoe4 labs
my spinal tap results shows that i may qualify for the study

then
yesterday i was officially notified that i now will be started in
the screening process for the study
next
my wife she and i go back to dallas to the alzheimers research center
at ut southwestern
to get reinterviewed
to get memory tests required by the study
to get examined by the neurologist running the study there
to get a unit of blood for testing
so
if i pass those tests
then
its a spinal tap
an mri scan
then
if i pass those tests
then
its the anticipated amyvid pet scan
if its positive
which means i have alzheimers disease
then i am in

i would then start infusions monthly of an intravenous infusion of
antibodies against the bad beta amyloid for up to 4.5 years

i will get the drugs or i will like in the crenuzamab study
get the placebo
if i get the placebo in a couple of years i will then be given
the real deal the real drug or up to 2.5  years
by then
they may seek approval for it to be on the market
if it works

this drug in preliminary studies in phase 1 showed
not like the others
showed the bad beta amyloid was removed
and
showed on memory tests that folks memory got better

so i am hoping this stuff works

so my melancholy has been lifted this week
as some hope appears to be that this stuff may work

i have spent every day since last week
thinking a lot about what is happening and is going to happen to me

since i was diagnosed i have lost several people i know
to cancer stroke heart attacks accidents other neurology disease
but
i am still standing living my life as i want to
they
sadly
arent with us anymore

for that that i am still here with mostly intact memory
i am thankful

the organicgreen doctor

what if, adni 2 follow up

WHAT IF
the theory is that alzheimers disease is caused by the accumulation
of a sticky gooey substance called beta amyloid that attaches itself
to the brain and as a result the brain nerve cells die and what the end
result is
alzhiemers disease
thats the theory that is about to be finally tested in a clinical trial in
columbia
why columbia and not the us

in columbia there is an extended family of over 300 people who
get full blown alzhiemers disease in their mid 40s
they have a genetic mutation that predisposes them to get the
disease

there are people here in the us that have the same mutation but they
are not in the same family and in the same area of the country
like the family is in columbia

the new drug being tested is called crenezumab
its an injectible drug that induces the body or it is an anitbody that
attaches itself to this goey sticky beta amyloid and starts to remove
it from the brain

instead of giving it to people who have full blown alzhiemers
the drug will be given to people who dont have any symptoms yet
but who most certainly will get the disease within 10 years

if the beta amyloid gets removed as its produced and these people
who are destined to get alzheimers dont get alzheimers then the
theory that the beta amyloid is the cause of alzheimers disease
is proven and we then will have the first real medicine that can be
used to prevent alzheimers disease from occurring

thats the treatment america and the world is waiting for
i know if it was available and it works i would be first in line
to volunteer to get it
similar drugs as ive mentioned before though do not work as
well in patients like me who carry the apoe 4 gentotype
so if it works it may not work as well in me and others who
carry this genotype

could we have a cure or preventative treatment coming soon
the goal is a cure by 2025
i of course dont have that much time to wait

ADNI 2 FOLLOW UP
yesterday i went for my one year follow up for the adni 2 study
alzheimers disease neuroimaging  intiative phase 2
i had tons of blood drawn in special tubes that are sent off to
the adni central location i think in uc san diego

i had a neuropsychological exam done again
yes the torture test
this was a little shorter yesterday as it was only an hour long
next year i have the lengthy one done of 2-21/2 hours
dont look forward to that one

i had another neurological exam done by a neurologist and
a lot of questions were asked about how i was doing

my wife she also has to go with me
they ask her lots of questions about me and she
has to fill out a lengthy questionnaire on how im doing
she was real good this time and didnt get faintified

then finally i had a special volumetric mri of the brain done without
contrast that also takes extra views of the area of the brain
where alzheimers usually starts
this volume of this area will be measured and any subtle
changes in its size will be detected on this mri
this mri although read locally will be sent to the research central
area i think again at uc san diego to be officially read for the study

as a part of the deal i dont get the results of these studies

however when i take the neuropsych exam i know personally how
i am doing
i still have short term memory problems that are noticeable when
i take the test and have been persistent
they do correlate with things i notice but others dont notice
in my everyday life
none of this interferes with what i am doing now but
would have interfered with my practice of medicine

this does seem stable however and has not really worsened in a
year and a half since i had my first neuropsych exam done

my wife she and i did a video for the alzheimers research center
they did over 4-5 hours of filming and made a 5 minute video

ive reviewed it and although its hard to watch for me i know
that its a good video that hopefully will encourage people to get
evaluated  if they are having symptoms or to volunteer for an alzheimers
research study

i should be able to post it on my blog and it also will be available
on the azheimers research centers website and possibly other
national websites soon

i will post where it can be viewed when its available

the organicgreen doctor

adni2

ADNI 2
adni 2 stands for
alzheimers disease neuroimaging inititative phase 2
its a mulicenter study on alzheimers
mainly funded by the stimulus package from 3-4 years ago
its the 2nd phase of this study
it will last for 5 years but if funding is present will be continued

it is considered the most important study on alzheimers that
has ever been done
important research information is being written on results of
this study almost on a weekly basis

in this study there are 4 categories of study subjects

-normal controls-i tried to enter as a normal subject but it
was found i had some short term memory deficits so i was
placed in the next category

-early mild cognitive impairment-these subjects are real early
in the process
many like me have very subtle symptoms not
noticed by others
many are still working their jobs
none are pilots or doctors or air traffic controllers who are still
working though

although real early many of us are already on aricept (donepezil)
which can slow the symptoms of alzheimers but will not stop the
progress of the disease
some times starting the meds now at this stage will delay the onset
of the disease sometimes as much as 5 years

-mild cognitive impairment-these subjects have less subtle findings
some which are obvious to friends and relatives

-alzheimers disease-these patients have all the signs and symptoms
of alzheimers

if the new medicine crenezumab thats being tried on the large family who
carry the early onset alzheimers gene in columbia works then that medicine
could be started
one day on normal subjects who will get the disease or
those of us in the early mild cognitive impairment group

the disease would be stopped or slowed down significantly
we are a few years away though from knowing if that will work
sadly for me since i  carry the apoe 4 genotype double gene
these meds may not work as well on me

today the tests i will have are
a general interview with my wife by the research coordinator to make sure
i am not having any new problems

a large number of vials of blood sent for muliple screening labs like
thyroid liver function test cbc etc and tests for proteins in the blood
that have been associated with alzheimers disease

eventually these blood tests will be available to everyone so that you
can be screened to see if you have a chance of getting alzheimers
it may be 90+% accurate

then next i have the test i dread the most the
2+ hour neuropsychological exam
the torture test
its frustrating because i know that i will have problems with parts of the
tests and cant do anything about it

then i have a mri of the brain
its looking for brain shrinkage and for subtle changes in the size of
the hippocampal area of the brain-the area where all this crap
starts

then i get a one year reprieve and go to annual visits
next year i will have all these tests done plus  a spinal test for
amyloid and tau protein  a fdg glucose metabolism pet scan and
a amyloid pet scan (thats like the new amyvid test thats now available)

is it worth doing this
yes it is even though i dont ever get the results
this research study the adni 2 study may help me one day but
will definitely help my kids or your kids or our grandkids
so
its worth it

the organicgreen doctor