alzheimers news.its been seven years since...

ALZHEIMERS NEWS-ITS BEEN SEVEN YEARS SINCE...

ten years ago i applied for long term insurance and got it
after passing a mental status exam
i got all of the questions correct
then
7 years ago i contacted the alzheimers center at ut southwestern in dallas
to be followed annually as i aged so i would know if i developed
memory issues
if i did i had decided that i would stop practicing medicine

i underwent a neuropsychological exam to get into the normal control
group of a large study called the adni 3
being in this study would allow me to be monitored long term
i was also added to a state run study doing the same thing

as a normal control you are what those with memory issues are
compared to

as i sat in that chair in that room answering those questions
many the same as i answered correctly 3 years before
for my long term care insurance
well
i felt like i was in a fog
got real sweaty
as i couldnt answer the questions
i knew then
my time like with my mom and my brother
it was my time

when i got the official report
memory loss greater than you should have for your age and education
you need to see a neurologist they said
i made a neurology appointment in a month
i started my month long slow down of my practice
not letting anyone know except my wife she
well
my nurse and our clinic supervisor sensed it
they knew
my last day she the supervisor said
you arent coming back are you

no
i said to myself
i knew that was it
i had promised myself i wouldnt stay too long
when the time arrived

my last patient i saw in practice was an employees son
who needed a two year check up
i contacted her to bring him in at the end of the day
he was the last patient i ever saw

the next day i got my diagnosis
mild cognitive impairment probably due to alzheimers diseas
i got a new drug
aricept (donepezil) to slow things down
it slows the symptoms but not the disease

i must say i felt devastated
as did most of my coworkers and patients

i couldnt go back
mentally emotionally i coudnt
legally with this diagnosis
medically legally i was now a high high risk physician
i retired my license
that was it

lucky for me
hundreds of patients reached out to me
ive maintained contact with many of my patients via social media
i have got to see the kids grow up
many now having kids
that all helps a lot

i reentered the study having been placed in the
mild cognitive impairment branch of the adni 2 study for 5 years

today i am receiving monthly infusions for another
3 plus years if not longer of aducanumab
which will probably slow down the disease
hopefully until even more new treatments become available


my goal is to see my granddaughter graduate from high school
she is 2 1/2


since my diagnosis
pat summit the tennessee womens basketball coach was diagnosed
with early alzheimers
she died over this 7 year span


my younger brother joe
the mirror i looked into when i saw him
died also from alzheimers disease during this 7 years

7 years ago
i really expected to be further along in this disease
at least where my brother joe was and pat summit was when
they were diagnosed

why am i better or why am i not worse than i was 7 years ago
aricept (donepezil)
healthy living
aggressively controlling my diet weight exercise blood pressure stress
cholesterol
i take a boatload of supplements that may possibly help
i think i was also really early in the disease
earlier than most are when they are diagnosed
having been diagnosed almost by accident

my diagnosis has been confirmed by several neurologists
diagnostic studies like spinal tap analysis and the amvid amyloid scans

so as i sit here typing this blog
i am so thankful to be here today
cognitively here
to be able to enjoy our family
our new life
still doing all the things i was doing before i was diagnosed
and since then

im lucky to be alive
im lucky to be this healthy
physically and mentally

thats my new years resolution
let this all continue
please

fire update
were done
the fire on this side is stopped
folks are being let back in their houses
the air is crisp and clear
thank you thank you thank you firefighters
you are the greatest

have a happy holidays
for those who celebrate
merry christmas

the organicgreen doctor

alzheimers news-1 down 47 to go

ALZHEIMERS NEWS-1 DOWN 47 TO GO

i did it yesterday
got my birthday present
as i wrote the best ever

as i drove the 3 hours trip i did a lot of contemplating
thinking about this 6 year long journey that i have been on
hoping it will last a long long time before its all over

i thought how lucky i am to be this far along
and not have worsening memory loss

during that time this last 6 years
i lost my brother from the final stages of this disease
had my older brother get diagnosed with it

i thought maybe just maybe i am the lucky one
getting an opportunity that they didnt get
to really really slow this down

i am honored to be in this trial
knowing that if its successful as it might be
that it could be a game changer for me
and all my relatives behind me
to have a chance to avoid this awful disease

thats how close we are to finding a treatment
its right now today not off tens of years from now
for me and my family it started yesterday

yesterday the day for the rest of our lives

lets getter on is what i muttered under my breath

i arrived yesterday early of course to the infusion center
its located in this building at the university of texas southwestern
medical center

i walked up to this desk where the busy infusion center is
there sits this guy called santa claus
he is the receptionist
everyone calls him that
since he looks like santa claus
and
plays one at christmas
nice as you would expect santa claus to be
nice first person to interact with

then there was some snafu
we may have to reschedule
some protocol has to followed exactly right
i was the first one starting this study there
some special approval had to done by some god in massachusetts
or somewhere back east at biogen

we may need to reschedule if you dont want to wait
nope i said
im staying until this gets settled
ive waited too long and this may mean to much to me and my family
i just want to get this thing done
getter done i mumbled under my breath

finally after awhile it all got cleared up

back i went
nice nurse
nice receptionist
nice neurologist
it helps to have nice medical personal taking care of you
when you are dealing with the unknown
dealing with a terminal illness

i remembered as i watched them start my infusion and draw my blood
their patients are the ones that dont usually fair well
its their diagnoses

below thats the brown bag stuff hanging on the pole
the stuff thats either fake stuff or the real deal
the real deal for me please

me
i thought as i watched them hook all this up
i want to be the exception for them
i want to be a success result

the only thing i noticed as i got my infusion was
that i tasted salt on my tongue and i got real thirsty
dont know if thats a good sign or not
when it comes to whether or not i am in the placebo group
or not

if i get headaches get confused have some dizziness
then theres a good chance i got the real deal stuff
however not everyone has side effects
i am at higher risk for side effects since i have the apoe 4/apoe 4 gene
this gene put me at an increased risk for getting alzheimers disease

prior to getting the infusion i had a memory test done
for some reason i noticed that i did better on it than usual
it may be because i have had it done so much
i can anticipate the answers before they ask the questions
however
they for this study do a variety of memory tests
most of which i havent done before
which make them more accurate

so
i finished my infusion without any effects
now
i return each month to do the same thing all over again
except
i dont have to wait around the extra hour or so like i did
this time
in and out in an hour or so each time

i decided i can deal with whatever problems pop up
for
in the end it may be all worth it

i scheduled my next infusion date on 4/20
i did that date on purpose
its in case you dont know is marijuana day

why pick that day
well
there is a lot of research that needs to be done on the ingredients
in marijuana
they appear to be useful in the treatment of neurological diseases
like alzheimers
however
the federal government severely limits the research that needs to
be done on these marijuana ingredients

in my contact with folks affected by these diseases
they are using marijuana
obtaining it from states where its legal
using strands that have the potential to help

its sad that good scientific research cant be done
to find things like this that may help

its my small way of protesting our governments restrictions
on this research

but
hopefully if this aducanumab stuff works for me
i wont have to get involved with using any 420 stuff

next
a month of waiting
then
round two

keep following me on this journey
i am hoping the end result will be a good one
if it is
there may be hope for a lot of people

the organcgreen doctor

alzheimers news-its my day

ALZHEIMERS NEWS-ITS MY DAY

today is my birthday
i have had a lot of birthdays
the 40th one was memorable
yes i got black stuff and got my yard trashed
i got all those over 40 jokes

then
came number 50
yes i got the aarp stuff in the mail

then
came the number 60
i told my wife she
i just want a quiet one
have people leave me alone
no harassment please
i got enough at age 40 and 50

after my 60th birthday
our life was humming along pretty good
we had no idea what would be coming along
in about 9 months
our lives would change

kabam
there was the diagnosis
that diverted our future to where it is today
an uncertain one

now
i have got a lot of presents over the years
some well most have been good ones
but
yesterday
well
i got the best birthday present ever

my phone rang
hi
this is the alzheimers disease center at ut southwestern
we have an opening tomorrow at our infusion center
do you want to start your aducanumab infusions tomorrow

i didnt even hesitate a second
we have made receiving these infusions our priorty
yes
ill be there
early

im ready
to get this show on the road
the sooner the better

for those who dont know
aducanumab is an antibody that attacks the bad beta amyloid
that accumulates in the brain
beta amyloid is thought to be the substance that causes alzheimers disease
if you remove it
the alzheimers disease may be stopped or at least slowed down

i will be one of the first to get this stuff at the alzheimers center

everyone knows the drug humira
its advertised on tv all the time
its used for diseases like rheumatiod arthirits ulcerative colitis
crohns disease and other connective tissue diseases
its given as shots under the skin usually every 2 weeks
its an antibody against a protein that causes the inflammation in
these diseases
its generic name is adalimumab

my drug
aducanumab
my birthday present today
works similarly
but
the protein it attacks is the bad beta amyloid in the brain

this drug aducanumab
is the best hope that we have right now to slow this disease down
this study i am in will determine if it works or not
my reading and my hope is that it will

so
i am ready
to get the best birthday present ever today
it must be a sign
getting it today on my birthday
i believe
i believe
its a good sign

the organicgreen doctor

alzheimers news-dont defund us now

ALZHEIMERS NEWS-DONT DEFUND US NOW

thats what i would say to our congress
not now
please
we are on the brink of finding a cure and or treatment
dont stop us in our tracks

much of the basic research that leads to discoveries
that can eventually lead to cures or treatments
for alzheimers and other diseases
starts with the nih and federal funding for this basic research
its where it starts
but
it doesnt ever start without money

let me digress a second
when i retired i became involved in two volunteer areas
meals on wheels
alzheimers

i have been doing meals on wheels now for 6 years
some of the folks i have delivered to those 6 years
without meals on wheels i think some of those folks
would have starved to death
yes
starved to death here in the united states
here in texas
here in central texas

we cant let this happen
defunding meals on wheels

yes over the last few years several of the folks who were
receiving meals on wheels had alzheimers disease
starving them is not a way to treat the disease
it does get them off the pay roll though
is this a new way to do the death panels

dont let them defund meals on wheels
some things the federal and state government should fund
this is one of them

i certainly would prefer my tax money go to the meals for those
older folks than go to some new canon or boat or ship


when i was at the alzheimers research center for my last visit
aside here
i should start my infusions next week
when i was there
there was great concern for the loss of research money for the
alzheimers disease center
some of their research is on the brink
between scientific research and medical research and treatment

back when the nih was cut severely in the mid 2000-2005
there was new research that was promising for cancer treatment
when it lost funding it was shelved for 10 years
then
when the funding came back 10 years later
it now is being used to cure i said cure people of leukemias and other
cancers
10 years too late for many

there is so much alzheimers research ongoing now
some could be the answer to ending alzheimers disease
or adequately treating it
it may and probably will be shut down or possibly discarded

there are 5 million folks with alzheimers disease in the us
in a few decades that number will shoot up to 50 million
that
folks
is when our health care system will be totally overwhelmed

we cant afford not to find a treatment or cure for this disease

we are treading on serious ground if all these cuts come through

why dont you call
give your congress person a good talking to

alzheimers disease like elderly hunger
it dont care what your political party is or your race or your religion
right now
its winning big time

its in our hands to do something
the voter

the organicgreen doctor

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

alzheimers news-am i in

ALZHEIMERS NEWS-AM I IN

this last friday
as my wife she and i were driving up to dallas
to the alzheimers center to begin this journey
hopefully
to get a new treatment for alzheimers disease
that may slow it down or if we are all lucky
stop it in its tracks

i did a lot of contemplating as i drove north
thinking back over the last 6 years
when
we made this same journey to the center
then
i was simply volunteering to be in the normal control group
of the large alzheimers study
alzheimers disease neuroimaging initiative phase 2

i was simply going up
to do my part to further our knowledge of what happens
in alzheimers
and
at the same time start a monitoring process for myself
since
it runs so strongly in our family

friday
as i sat in the same damn chair that i sat in
6 years ago when all this happened
i looked out the window
well the blinds were closed

in my reoccurring dream i have about this
there is a large tree growing up to the 4th floor outside
this window
in my dream it is a sycamore tree
i think because my grandparents one who had dementia
had a huge sycamore tree in their yard
and
i use to climb on it as a kid

all that really is there is just the windows of a building

but as i sat down to take the memory test friday
the same tester was giving the test that gave me the first one
i said you know in my dreams there is a big tree out there
she smiled that sweet smile of hers

now 6 years ago
i was broadsided by failing my memory test
ive done the thing so many times now
i know the parts i cant do very well
interesting is
some of the parts i have gotten better at
some i dont do as well

now
this study is called the aducanumab study
by the company biogen
of all the drugs out there right now
it has the most promising chance of being successful

i have had my eye on this study now for several years
well
i have fought hard to get into it
knowing that this could be my last chance to
plug into one of these new drugs
if i wait too much longer
i may to late for them to do any good
so
i know its now or never for me

now i continue to do all the healthy things i should be
doing
the same ones that all of you who read this should be doing
control blood pressure cholesterol weight
do exercise eat right get sleep avoid stress etc

all those no matter what i will keep doing
oh if you are genetically kin to me you should be aggressively
doing the same
since this drug is really meant for those of you
who have no symptoms but are going to get alzheimers

yes i was a little bit nervous
its like a terminal cancer patient
getting this glimmer of hope
from a new research drug
that will slow down the cancer or cure it

this is what this study means to me

so here we go

we arrived there at 930am and left there at 200pm
with no downtime

first
we met with the screening nurse
who went over the lengthy protocol with us
who went over my medical history with us
who took my vital signs weight etc

then
second
they drew some blood
well a lot of blood
i think i counted 10 vials of blood
its 2/3 of a can of soda
now i didnt faint
but
i need to eat a lot of iron foods for awhile to build
my blood back up
its almost like donating a unit of blood

they are testing cbc chemistries ua all kinds of biomarkers
genetic tests dna and rna studies etc
even saving some for perpetuity
in case its needed for more research some day

i realize i have my blood stored all over the place
across the usa

then
third
since i didnt pass out
i was able to proceed to the next testing
the much dreaded memory testing
it took about an hour
i did parts of the mmse memory test
some components of the moca test
and
a new test thats used specifically for this study

to get in this study
i have to be in the upper part of the mmse
but
must have difficulty with parts of the short term memory part
that correlates with mild cognitive impairment amnestic type
the stage right before alzheimers disease

knowing what i know from taking these things
i passed the mmse and will qualify based on how i felt i did
i had difficulty with the parts of the test that is correlating
with what i have noticed in my day to day life
which is what they are looking for

so far after these three things i feel like i am qualifying
for the study

then
fourth
i underwent answering questions on my memory
by a alzheimers center interviewer
comparing what my wife she has told them
to what i say

first question
do you have memory issues
the answer
yes
granted its subtle probably not recognizable to most
folks who know me

then
fifth
i underwent a lengthy neurological history and examination
by the main investigator at the alzheimers center for
this aducanumab study
he was good at picking out the parts of my history and exam
that correlates with my memory loss

so
at the end of the day
how do i feel about my chances of getting past this step
i feel like i met the criteria
unless something is hidden in the labs somewhere

all this information is sent to the biogen folks
to review
they make the final decision

if they say ok
then
i have an mri of the brain
if i pass that one
i have a amyvid pet scan for the bad beta amyloid
the test that is missing from all that i have had done

the one
that i feel will give me my final answer
the one
that will provide me with what i need to plan
the rest of my life

fingers crossed

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- much adu

ALZHEIMERS NEWS-MUCH ADU

i am hoping that the following is a
game changer
for myself my siblings
and
all those infected with alzheimers disease
for all those who will be infected with alzheimers

if you have not read my recent blog titled its time
then consider reading it first before preceding further

the amyloid theory for alzheimers is that beta amyloid
accumulation in the brain causes alzheimers disease
if you remove the beta amyloid
alzheimers is controlled or if we are lucky cured

now enter 2016
there are now drugs that do this are being studied right now
to see if they work

if they do
they could be approved by the fda in 2-3 years
maybe sooner

so
since i have mild cognitive impairment amnestic type
the precursor to alzheimers disease
i may be a good candidate for this drug

in theory
if i take one of these drugs
if it works
my disease will be stopped in its tracks
maybe prevented
maybe controlled

in the next 5 years we will know if this stuff really
does what it suppose to do

so
yesterday my wife she and i got up at 500 am
made the 3.5 hour drive to
the alzheimers disease center at the
university of texas southwestern medical school
to
do my annual evaluation there
but
also
to get more information about a new treatment study
on patients with my diagnosis
mild cognitive impairments amnestic type
and
those with positive amyvid pet scans showing the bad
bad beta amyloid in the brain
the hallmark of alzheimers disease

we met with the head of the department there
with the research director who is running this new study

this new drug is called aducanumab
for short i call it the adu drug

this is what i called an alzheimers vaccine
it is an antibody that will be given as a monthly infusion
lasting an hour for maybe up to 180 weeks

in theory it goes into the brain removing the beta amyloid
from the brain and spinal fluid
if this works two things would be noticed

one
the amount of beta amyloid in the brain gets decreased
so you can see on the amyvid pet scan the marked decrease

two
a persons memory gets better or stays the same
it doesnt worsen
im hoping for the gets better version

now
in phase 1 studies of the adu drug
thats what happened
the amyvid scans got better
folks memory improved

so the company biogene skipped over phase 2 studies
directly to phase 3 studies

after 18 months if this stuff seems to work
the company will apply for fda approval

alzheimers drugs like some cancer drugs get fast track approval
by the fda
it could be available for the general population in 2-5 years

so what i just wrote is
there is a drug that may treat actually treat alzheimers disease

not like aricept which only treats symptoms not the disease
its probably one of the reasons i am better
but i know that effect will eventually end

that this new drug may be available in two years

so pay attention if you are at risk for this disease
it probably will be used eventually in folks
that
do not have symptoms yet
like
my siblings and relatives
and
yours

at ut southwestern they will be signing up 20 people for this study
lucky for me is that i am the first person they will be signing up

so
yesterday
i did some of the initial medical history stuff
got a neurological history and physical by the head of the department
got a memory test

like i told the examiner the memory test i hate the most
not the scans not the blood draws not the spinal taps not the infusions

so
i was given the 25 page consent form to review
i decided there is nothing in that form that will prevent me from doing this
it will take 33 trips to ut southwestern over 180 weeks to get this all done

next
i will do more medical history stuff
do more memory testing
they draw 240 ml thats about 50 tsps of blood
then
thats all submitted

if i pass those tests
then i do a mri maybe another spinal tap
my previous mris are normal
my previous spinal tap shows a decreased beta amyloid with low tau protein
the hall mark sign of alzheimers disease
then
the test that i have been waiting for
the amyvid pet scan that will show if i have beta amyloid in the brain

if its positive
they only take positive folks
i am in

plus i finally will know for as sure as one can that i have it
alzheimers disease

now i dont get to see the scan
but
if i enter the study that means the scan was positive

then
i do the monthly infusions for 18 months
getting more mris and blood tests and memory tests along the way

i will either be in the treatment group
or
the placebo group

at the end of 18 months
all placebo folks and all who got the real stuff
have the option to go another 100 weeks of treatment with
aducanumab

hopefully by the end
this stuff will be on the market

if accepted
if this works
i will get close to 4-5 years of treatment with an iv infusion
that hopefully will stop my alzheimers disease in its tracks
or
will regress it significantly

a real life changer for myself   my wife she   and my family


if it works i could see my granddaughter ms b
graduate from
elementary
middle school
high school
college
get married
have kids
something
i never thought i would be thinking

i realize this is not a guarantee
there may be side effects that show up that shuts this drug down
so far this one and others are not showing much of these side effects
except high doses of it might cause problems

but
as i read the potential side effects
you know you see them on your pharmacy prescription sheets
see them on tv at the end of the commercials
nothing in there scares me enough
since
i realize the side effect of not doing anything is much worse

ive seen it in my mom and my,younger brother
sorry
thats not the way i want to end all this

now
when this comes on the market it is expected to cost
close to $20,000 a year
if i get in the study i will get $100,000 of free drug
and
may get it free even longer if it gets continued

so here at the country n
my wife she and i are excited to be considered for this
ground breaking possibly historical drug study

smiles do abound around here today

its much adu about a lot

for more info on this study and contact information
go to this link for the alzheimers center ut southwestern
yes thats me and my wife she in that video

or
this link for the study being done in other states

here is an article on this drug

the organicgreen doctor

alzheimers news-its time

ALZHEIMERS NEWS-ITS TIME

briefly here is a quick version
of my story
with possible alzheimers disease

i had a normal memory test 8 years ago while applying for
long term care insurance
then
when i volunteered to be in the normal control group of
the large alzheimers study called adni
it was found that i had short term memory loss
diagnosed as mild cognitive impairment amnestic type
thought to be the precursor of alzheimers disease
some think it is early alzheimers disease

i quit work because of the diagnosis
and was placed on aricept (donepezil)

i reentered the adni alzheimers study in the
mild cognitive impairment group
finishing that study last year

since retirement i got aggressive with my health
controlling all my health parameters like sleep blood pressure
cholesterol changing to a 90% vegetarian diet
staying active physically and mentally
staying busy and happy

i was found to have low b12 and low vitamin d3
and high homocysteine
i take b12 and vit d3 and folate and b12 to correct these
abnormal labs respectively

so now after 5 years my memory is back to normal for my age

i also take 12 supplements a day based on a study from ucla
that showed folks got better on it
not proven yet in a larger study but not disproved either

so doing all this something made me better
maybe the aricept (donepezil)
maybe the supplements
maybe correcting my abnormal labs
maybe getting aggressive with my health

my opinion
it was all of these together

will it all keep me from getting full blown alzheimers disease
if i have it
probably not
its just delaying things for awhile
hopefully a long while

the things that make me think this may have been alzheimers
are
a normal memory test then 3 years later its not normal
a strong strong strong family history of alzheimers disease
both parents and two siblings
an apoe 4 double gene that increases the risk for getting alzhiemers disease
a spinal fluid analysis showing the bad beta amyloid level and the
tau protein levels are abnormal

so where am i in this quandary
do i or dont i

well
there is a test called
the amyvid pet scan
it will show if a person has the accumulation of beta amyloid in the brain
that is the hallmark of alzheimers disease

so if i have the scan done

if its normal
its not likely i have alzheimers disease
if its negative i will stop my aricept (donepezil) and move on with my life

if its positive
it doesnt mean i have alzheimers disease as other things can
cause the accumulation but usually its alzheimers disease
adding up all my other risk factors
basically
if its positive
i have alzheimers disease

so its time
next tuesday

i go up to the alzheimers disease center at ut southwestern
in dallas for my annual evaluation

also there are new studies all treatment ones that are starting up there
sadly to say
i probably will not qualify for them
i am either too normal or too abnormal for them
all of them do the amyvid pet scans
so if im in the study i will get a scan and unlike the adni study
i would get the scan results

my guess i will not qualify for them

another study about to start soon up there
is the ideas study sponsored by medicare
to determine if the amyvid scan is useful in private practice
i say yes
its used already in private practice all the time

when i look at the criteria for the study
it looks like i qualify
based on using the scan to determine
whether i need to be on medicine
and
how i need to plan my life if its positive

the problem is i have been waiting for all these studies
now for 3 years hoping i qualify for them to get an amyvid pet scan
for free
at the same time helping advance knowledge about the disease
and
if i qualified for a treatment study
actually getting treatment years before it got onto the market

so back to next tuesday

i will ask
do i qualify for a treatment study
no they say
then
i will ask
when is the ideas study starting
if its not before the end of the year
then
in my hand are two orders for the amyvid pet scan
one here in austin
the other at ut southwestern

all i have to do after tuesday
is schedule it
get the results not long after that
then
i will know where i am with all this
then
ill plan my life accordingly
stopping my aricept if its negative
but continuing everything else i am doing

i will look closely at my future
if its positive
continuing the aricept (donepezil)
then i and my wife she need to be more aggressive
about decisions for our future

yep
its time

the organicgreen doctor