alzheimers news-here comes round two

ALZHEIMERS NEWS-HERE COMES ROUND TWO

i am preparing for two presentations over the next 3 weeks
one an alzheimers panel that i will be on answering questions about having mild cognitive impairment from a moderator and the audience at ucla medical center in santa monica
then
another doing a 20 minute presentation on telling my story with my diagnosis followed by questions from the audience at the valle verde facility in santa barbara
then
a usc professor wants to interview me about being diagnosed while i was practicing medicine

then
yesterday and the day before i started the long term extension that will last another two years and maybe longer of the biogen aducanumab study
this time i will either get the 3 mg dose or the 6 mg dose of the aducanumab

since i have the apoe 4 apoe4 gene i cant get the larger 10 mg dose since apoe 4 folks run the risk of having brain bleeds on that dose
the 10 mgm dose is the dose in the phase one study that worked the best
it cleared all the amyloid out that showed on the original amyvid scan in the phase one study
my two doses that i might get still cleared most of the amyloid but not all of it

in the first part of this phase three study im in now i either got the placebo or the other two doses
if i got the real stuff then they leave me on that dose
if i got the placebo then i get randomly the 3 mg or  6 mg dose
i want the 6 mg dose
well actually i want the 10 mg since i dont mind a little brain bleed
since
the option of doing nothing
well
that option is a hell of a lot worse than a little brain bleed
especially since most folks recover from the brain bleeds without effects
in fact if you get a bleed they just lower the dose then work the dose back up to the original one

i am so glad to get rid of the placebo cloud
have i lost ground by being on the placebo or have i wiped some of that bad stuff outa there

so all this alzheimers stuff plus getting ready for the alzheimers walk in november
see below
i feel almost like i have ptsd
i had to rethink about all thats happened in the last 10 or so years re alzheimers in my life
most if it is not good
my mother died
my brother died
my older brother was diagnosed
i was diagnosed
i had to quit work
i have made it my mission to go out there and talk about it freely
you ask me ill talk about it
i can see how ptsd folks do better being in the open and talking about their issues

i worry about not seeing my grandkids graduate from high school
i especially worry about not being around when mr h will need a lot of help
i worry about my wife she when she has to be a caregiver
i worry abut my two sons
i worry about my other siblings
i dont want any of them to have to deal with this
i think about my dad dying of a heart attack
i know he was headed down the alzheimers journey
man he spared himself and all of us a lot
i think about my mom and brother going down that alzheimer path to the end

when i do all these alzheimers things i do
sometimes its hard to make myself do them
i feel sad but no im not depressed
dont worry i get screened 4 times a year for depression
i cry sometimes as i practice my presentations or write my blogs
but
it really is therapeutic for me

i really hope that others can learn from what has happened to me
especially
the caregivers
please please take care of yourself


so
off i went yesterday afternoon
i had my amyvid pet scan that shows that bad amyloid upstairs in  my brain
thats the one that on me looked like this 18 months ago

they gave me the radioactive stuff in an iv then waited 30 minutes then into the pet scanner i went
with it whirling whirling sounding like a washing machine spinning a load of clothes
when its over
what i would give to just take a look the screen

since then i would know
did it work did it work
or
did i get the placebo
ill never know

for now im looking forward way out into the future as far as i can see
im never looking back
only forward

im doing all i can to slow this down
but
will all im doing work

donate and or walk with you local alzheimers walk

my younger brothers team in the south arkansas walk to end alzheimers on saturday september 22nd is called
#joe nash
click above to see his team page

his course with alzheimers bothered and bothers me a lot
we were a year apart
he died not long after i was diagnosed
when i looked at him as he worsened i felt like i was looking in a mirror
i really thought when i was diagnosed that today i would be where he was when he was first diagnosed

if you live in south arkansas and know his family show up tomorrow and support them
and the fight against this disease

it means a lot to them

my team in the santa barbara walk to end alzheimers on saturday november 3rd is called
organicgreendoctor

click the link above and donate and or walk with us

the organicgreen doctor

alzheimers news-the answer to your question is

ALZHEIMERS NEWS-THE ANSWER TO YOUR QUESTION IS

well
its according to what the definition of is is

the most common question i get asked about alzheimers is
i get asked at least once a week is

should i get tested

this last week a former nurse stopped me
you know my mom died from alzheimers disease
im worried i will get it too

i knew what was coming out of her mouth next

should i get tested

first
ill answer this for this date 4/20/18
an important date each year

soon
though the question will be answered differently

so
on this day
should you get tested

if you are having memory issues you should go to your doctor
make an appointment only for memory issues
make a list of what you have noticed
dont let them ignore your complaints
dont bring up other health issues just the memory problems

you should be given a history and exam looking for causes
this history and exam may find the source of memory issues
like poor control of health things like blood pressure diabetes
sleep issues mental issues medications cholesterol etc

you should have a memory test
the clock test or the mini cog test are not good enough
i recommend trumps test he took the moca test
please dont take it online as if you are exposed to it too much
its not as accurate

if you flunk the moca test you should have a neuropsychological exam

you should have lab tests
cbc blood count   metabolic profile   thyroid level
maybe a vit b12 and vit d3 levels

then based on these results
you may need an mri
looking for brain shrinkage and or strokes and or masses etc

you may get your answer when all this is done

in private offices thats the workup thats done

now some doctors will do more
but insurance doesnt pay for them

genetic tests for apoe 4 status and early onset alzheimers genes
spinal fluid analysis for beta amyloid and tau proteins
amyvid pet scan for beta amyloid

if you have or are going to have alzheimers disease
those last two tests will be positive

most folks dont go this far
the noncovered tests cost close to $10,000

i have had them done
i know the answer to the question
do i have it
i do

now 8 years ago those spinal fluid tests and amyvid scan
were not usually done in the private doctors office
they were done mostly in research settings
like in the adni 2 study i did
its the study that actually led to my diagnosis

now its common for private doctors to do these tests
if the patient wants to pay for them

now
in the research world only
how and when you make the diagnosis of alzheimers disease
is about to change

in the research world
the diagnosis of alzheimers disease will not be based
on symptoms like memory loss
yes
thats right
i repeat
the diagnosis of alzheimers disease will not be based
on symptoms like memory loss

it will be done by diagnostic testing
genetic tests
spinal fluid analysis
amyvid pet scans for amyloid
tau protein pet scans for tau

thats how it will be diagnosed

think about this
its not based on memory issues

so
lets say when i was 55 years old
i would go to the doctor
should i be tested to see if i have it
yes
why
strong real strong family history of alzheimers disease

so
beside a history and exam
they would do the labs
then
draw blood for genetic tests
mine would be positive for apoe 4 apoe 4 gene the late onset gene
a spinal tap for amyloid and tau would be done
my levels would be starting to become abnormal
an amyvid pet scan would be done
it would be positive for amyloid plaques
a tau pet scan would be done
it would be positive most likely

now at 55 years old i had no memory issues
in fact at 58 years old i had memory screening for my long term care
similar to the moca test that was normal

my diagnosis at 55 years old
based on these 4 diagnostic tests
would be
alzheimers disease

now this is in the research world
what happens there eventually gets into the private medical world

its explained this is like coronary artery disease early on
its not based on symptoms like chest pain or heart attack
its based on diagnostic testing like cholesterol stress testing
heart ct scans
you can be told you have coronary artery disease before symptoms
start

so
it will be with alzheimers disease

ive had all my tests done
so
i know my diagnosis

what this means is
many of you reading this right now have alzheimers disease
that could be diagnosed before symptoms start

unlike coronary artery disease
which can be treated
alzheimers disease cant be treated yet
yet
but the thinking is
within 10 years there will be treatment
so then
you want to know as soon as you can that you have it
so you can start treatment

so
nurse i met
this is the reason i hesitated to answer that question

should i be tested


a new research study using these tests is available across the us
its the 3rd one of the adni studies
i did the adni 2
its called the
adni 3 study
you can click on the link for more information

you can also go to clinicaltrials.gov or to trial match at www.alz.org
to find more information on research studies

the lack of research volunteers is the biggest obstacle to doing
alzheimers research
to find a cure for this awful disease

do your part
i am

the organicgreen doctor

alzheimers news-baceless

ALZHEIMERS NEWS-BACELESS

in the amyloid theory of alzheimers disease
beta amyloid accumulates in the brain
this accumulation leads to brain cell death

many of the new drugs are aimed at
1 removing the amyloid thats accumulated in the brain
or
2 preventing it from being deposited
or
3 preventing it from being produced in the first place

the drug biogens aducanumab that i receive in my monthly infusions
at ucla if i am getting the real drug instead of the placebo
is an antibody that goes in and does 1 and 2
it removes the accumulated amyloid from the brain
and
it prevents it from being deposited in the brain by binding it
up before it can be stuck in the brain

as aside
i have now done 1 year of these infusions
in 6 months i will be switched to definitely getting
the real aducanumab for at least 2 more years
so
i am hoping that ive been on the real drug so that by
septermber 2018 i will have received 20 doses of the
real drug

if that is so my amyvid pet scan for the amyloid that was
in my brain 1 year ago should be all clear
fingers crossed

now there is a lot of research going on to block the
bace gene or beta secretase gene in the brain that
cleaves the beta amyloid to make the stuff that sticks in the brain

there is a tablet produced now that is taken regularly
is called a bace inhibitor
which means it blocks the gene
so the bad protein amyloid is not produced

by preventing the amyloid from being made it cant be
deposited in the brain


studies using this bace inhibitor are ongoing now
in patients

who are prealzheimers
which means they have no memory issues but they have
positive scans like that above for the bad beta amyloid in the brain
eg
if i had a scan 20 years ago it probably would have been positive
for the bad beta amyloid

who have mild cognitive impairment or early alzheimers

so by stopping or reducing the amyloid production in the brain
alzheimers disease would be slowed or stopped

recently researcheres were able to remove the bace gene
totally in rats with alzheimers disease
the rats memory improved back to normal
so there was no bad beta amyloid in the brain

so by removing this gene or inhibiting it with drugs
alzheimers disease could be prevented or slowed down

so
maybe in the future
folks will take a bace inhibitor pill to prevent the
bad amyloid from being produced
then
add a drug like aducanumab that i am on
to remove any beta amyloid that was produced or deposited
then
you could treat
or
if we are lucky
cure alzheimers disease

lets hope we are this close

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-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