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

country n news-its a strange one

COUNTRY N NEWS-ITS A STRANGE ONE

as i walk around our property doing my spring clean up
that i usually do in april and sometimes may
i see so many things that say spring is just early
and
that our winter was real mild

well
it was mild except for one night here when it got
down to 12 degrees
enough that it damaged all the cactus on our property
even the native prickly pear cactus took a beating
also our bay tree got nipped on the top branches
our monterey or mexican white oaks all lost its leaves
usually in a warm winter they dont lose them at all

our early peach tree i dont know what type it is
its definitely a short freeze hour one
bloomed over a month ago
it is now loaded with peaches small ones
which i will have to thin out to about every
6 inches so we will get bigger more delicious peaches
these are the best peaches that we make
when they make
now if we get that cold snap that usually hits
we could lose them all if it gets down in the 20s
fingers crossed

last week i took this picture of our first two
bluebonnets
they usually pop out in april to mid april
not this year
they will all be march bloomers

when you sit on our lower deck
you hear this constant humming
like a nature concert
all day long
its bees covering up our crossvine blooms
they arrive at dawn and dont leave until
the sun goes down

a beautiful site as you walk up to our house
a beautiful sound also

each year i accumulate a lot of leaves
that folks give me
this is a stack of about a 100 bags
that i tore apart and placed in my chicken coop
and in my large c shaped chicken run around
my garden

these girls
they actually go nutso over bags of leaves
they dig down in there
scratching around
finding seeds small seedlings bugs
to eat
its like when you hold a baby who is breastfeeding
you know that humming sound that contentment
sound they make
well
those girls
they make this sound thats a sound of happiness
and contentment
while they work those leaves
eventually shredding the leaves to smithereens
pooping all over them
mixing them all up
making
the absolute richest compost you can make
plus
they also reward us
with all these eggs
as thanks for giving them these leaves

so
here at the country n
its such a peaceful beautiful place this time of year

we enjoy it and appreciate it every day

the organicgreen doctor

trumpcare revisited

TRUMPCARE REVISITED

as i wrote recently
i plan to keep an open mind about the trumpcare plan

i really dont care which party or group puts forth a new plan
as long as its better and protects all americans

so i stopped yesterday and watched the press conference
of secretary price as he presented and talked about the
new proposed plan

i call it proposed since what starts out is not always
what gets spit out at the other end
after going through congress
getting eaten up by special interests with a lot of money
i guarantee that big pharma health insurance companies
hospital groups all are going to be spending big bucks
to both sides i must add to get what they want in the
new bill

eg
when a bill a starts out it will be bill z in the end

then
i notice dark clouds on the horizon already
conservative republicans dont like it
democrats dont like it
those with lots and lots of money with influence
dont like it eg the koch brothers
so this trumpcare may have an uphill ride

but
the republicans have promised theyd do one
we are starting to get closer to the mid term elections
those will influence what gets done
if this bill is not passed quickly

i realize that this is way a  new health system is going
to be built
piece by piece over time
of course thats what got us in this mess before
piece mealing it

the floor really needs to be swept clean
and
we completely create a new system
the goal
affordable
covers all
has good outcomes
our outcomes are bad compared to other industrialized countries
really an embarrassment not good

remember through all this
we are only talking about 7% of our population that this directly affects
it looks like half of those will eventually lose coverage
granted the rules that apply to the trumpcare will filter back to
those who have company insurance or government sponsored insurance
this will affect our coverage

so far
some of the good stuff from obamacare is being saved
the preexisting conditions part is being saved
but there will be high risk cost that will be applied
expect to pay more if you are high risk whatever that means

no lifetime limits on coverage thank goodness
one premature infant could wipe folks out forever
a 26 year old could stay on parents insurance

i saw no mention of the requirement for preventative care
im sure thats addresed somewhere in the bill

you are not required to have health insurance
i know that stuck in everyones craw
i understand why it was there to force healthy folks into
the insurance pool

block grants theres that word again will be used to cover folks
on medicaid however the numbers on that will drop in a few years
there will be a lot of folks left out of the system when that happens

if you drop your insurance and then get back into the system later
you will pay a 30% penalty on your premiums
this one doesnt stick in the craw as bad as the other mandate

the older you are the more premiums you will pay
the premiums will be allowed to go up 5x rather than 3x
uh oh theres nothing worse than a group of angry grayhead folks

he didnt say they would get rid of those death panels

then there is the tax credits and the health savings accounts
it seems to be helpful but it will not be as much as under obamacare
if you are lower income these may not help you as much
my guess is a lot of folks will go back to just not having
health insurance again
we all pay for this one way or the other

they have thrown the abortion issue in the new program
that will automatically lead to a lot of opposition
that the trumpcare doesnt really need
they should leave this out of the bill
add it back later if thats what the system wants

i also heard secretary price say
if you like your doctor and your hospital and your insurance
you can keep them

me thinks he should not have said that
thats not ever been true even before obamacare
its doubtful trumpcare will do this either

so my guess is
this trumpcare bill will change as it moves through
a lot of people will lose coverage
a lot of people just wont get insurance
most of us wont be affected much by these rules except
we will be paying more as we age or if we have health issues
our place in the health system rating compared to the rest of the
world will not improve

but
like i said
i plan to watch this all carefully
listening to both sides of the arguments

i personally am pleased with my health care coverage
i dont want to change
i will hold secretary price personally responsible

the organicgreen doctor