anniversary

ANNIVERSARY
today is two anniversary days
one is the anniversary of my parents
now deceased
we miss them

the other
is the anniversary of this blog

it was originally started
when my wife she suggested i watch this pbs show
on a lady that started blogging
and
now makes her living doing it

i said
i can do that
so
i did
and
i havent looked back

i started blogging on our living at the country n
on things like rainwater harvesting organic garden larry the rooster
chickenering etc
also
i hoped to write some on what it was like to be working
as a family doctor

then that fall late winter
it started as an ocular migraine
i had wavy lines like i was looking at a messed up tv
it lasted 30 minutes
was this the start of it all
i dont know

then 3 months later while volunteering to be in the normal
control group of a large national research study
at ut southwestern in dallas
it was noted that i had short term memory problems
i was not aware of

from there i went to having a diagnosis of mild cognitive impairment
and
getting placed on the alzheimers medicine aricept (donepezil)
to now being in a large new experimental treatment trial for
alzheimers disease called the aducanumab study

so
i refocused the blog to include my journey with my diagnosis
luckily for me it hasnt progressed in 7 years
maybe my memory has slightly improved
its definitely stable

so now 7 years later
i have written over 1719 blogs
had my blog reviewed as many as 700,00+ times
from folks around the country
around the world

i communicate with them frequently over this blog facebook and twitter
answering questions about gardening rainwater collection etc and
of course
alzheimers disease

so
this summer as we enter another phase of our life
here in socal
we hope to continue our journey with the same focus as before
gardening organically of course
healthy living
alzheimers disease and our quest for a treatment and cure
ms b
anything else i can find interesting thats happening in the world
yep
theres plenty of material to write about

i hope to write until it doesnt make sense
the words i put down on this computer

thanks to my readers

the organicgreen doctor

alzheimers news-#5 down and thanks

ALZHEIMERS NEWS-#5 DOWN  AND THANKS

on tuesday i went it for my #5 infusion of the aducanumab stuff
well it might have been the placebo
i will never know if i got the real stuff or not
nor will the researchers at ut southwestern alzheimers research center
its a double blind study

now
like i have written before
if this stuff seems to work in little over a year in those who got
the real stuff
it will be offered to all of us for another 3.5 years
extending my treatments well into 2022
heck we will have had another election by then for president

today while awaiting my call for my infusion
as i sat in the lobby
there was another couple sitting there waiting also
i went over and struck up a conversation

wow how similar this guy and i were
we were about the same age
we were both professionals white collar that is
we both were surprised by our diagnosis when it happen
we were using the same words as we talked
he said i dont want that placebo stuff
i want the real deal stuff
i said that also i thought to myself

just think if this stuff were to work in both of us
then
in 5 years we will be just like we are today
no better maybe
but
not worse
thats all we can ask for
we both agreed on this

i wish to say thanks
to the alzheimers disease center at ut southwestern for providing
care for me and helping me along this journey
the last 7 years

special thanks to
kristian
kasha
zohre
barb
dr rosenberg
dr quiceno
dr williams
dr womack
for being on my side as we move forward to fight this
terrible disease

i as a volunteer for the research studies
them as researchers trying to find a cure

a reminder
the biggest obstacle to finding a cure
is you
there are not enough volunteers for these studies
that is sad
that we cant get the research done
because theres not enough money
theres not enough volunteers

www.clinicaltrials.gov can link you up to studies in your area

i am doing my part to fight this disease
what are you doing
remember
everyone of you will be affected by alzheimers disease
if you are female and you live long enough
you will more likely get alzheimers disease than not

so as i got my infusion
got the needle out of my arm
drove to the airport
got on the plane
to fly back to california

yes
i was sad
i left an important part of me back there
but
hopefully i can gain some of it back
as
we move forward to ucla to continue our fight
against alzheimers disease

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

join us as we walk this year

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

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

i also will have a team in the
santa barbara walk to end alzheimers 
on saturday october 28th
team name is organicgreendoctor.com

join us

the organicgreen 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- 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