alzheimers news-the alzheimers week that was

ALZHEIMERS WEEK-THE ALZHEIMERS WEEK THAT WAS

it started with our santa barbara walk to end alzheimers last saturday
i was doing ok helping set up the walk
since i am on the committee for the walk this year

now
i was doing ok
until i had to get up and talk for a few minutes
since they asked me to carry the blue flower
the blue flower represents those of us who have alzheimers

now
ive got up and talked before a lot of these walks
like this
in fact i pretty much say the same things each time

this time
as i stood on the stage
looking out over the crowd of close to 500 folks
my granddaughter looked up at me
i could see her pretty little face with this look on it
granddaddy she said out loud
what are you doing up there

well
that was when the dam broke
on my tears
which flowed all the way through my two minute talk
it flowed from me to the audience to the other speakers
to the two emcees

i managed to get through it
barely

i guess folks will remember me talking after all that

then
this week was our ucla trip
to get my infusion #9 of the experimental drug aducanumab
that hopefully will slow the disease down some

for these trips
its only 90 miles
but its into the beast of the 405 in la
a drive that can take 2 hours or 3 1/2 hours
sorry
but this day we got the long version

we leave while its dark
after about an hour we start hitting the beast of the 405

the last 15 miles takes longer than the first 85 miles

so we eventually get there
i get settled into my bed i have to lay on

they start my iv

then
draw all this blood work
then
i see the neurologist
then
i wait for the pharmacy to mix it all up
the pharmacy knows what im getting
no one else does

i always tell them
please dont give me that placebo one
on you know you got the real one the nurse says
she says that to everyone i bet

then
they hook me up to the iv
it takes an hour to run in
i feel nothing but a salty taste in my mouth
after an hour they flush it with saline
then
im out of there 3 hours after it starts

my wife she says as she sees me
you know
your face is always real flushed when you finish
those infusions
yes
i said
any side effect i can get is a good one

i have somewhere around 50 +- more of these to get
hopefully a lot more

then
yesterday the biogen folks presented the results of
their phase 1a study that had been extended for two years
on around 150 folks

this phase 1a study was the one that looked promising
the fda allowed it to get fast tracked to phase 3 studies
so if it helps it can reach the market quicker
the phase 3 study is the one i am in now

this phase 1 study when they extended it these two years
is pretty much like the study i am in

so those folks some of them have been taking the aducanumab
now for 3 years
so these results give us a glimpse into whether this stuff will work

basically in layman terms
my terms that is

the 10 mgm dose worked the best but also had more side effects
so in my study they only are using the 3 mgm and 6 mgm dose
so if i am not getting placebo then i am on one of these doses
when my phase 3 study gets extended in 15 months
i will definitely be on one of these doses

here is what they found in layman terms
after 3 years the aducanumab removed enough of the beta amyloid
from the brain so that the amyvid pet scan for the amyloid
 are now mostly negative
or close to negative on the lower doses

now
the big determinant of whether this works is
does the memory get better or does its decline slow down

now this is my interpretation of listening to the webcast of the presentation
and reading articles on the results

none of the doses stopped the decline in the memory based on
two memory tests one being the mmse
but
the high dose the 10 mgm
slowed the decline of the memory significantly compared to the
decline seen in the folks who got the placebo
the 3mg and 6 mgm also slowed the decline in memory
but not as much as the 10 mgm
lets just say it did it half as much

so
in alzheimers years
3 years can be a long long time
and any slowing of the mental decline over the 3 years
i know any family member would take that

compare that to aricept (donepezil) the alzheimers drug most folks
get put on at first
there is no comparison to the aducanumab

so
my laymans impression
it removes the bad stuff the amyloid from the brain
by doing so the aducanumab slows down the memory loss
enough that if it does this it will be used in the future to
treat someone with early alzheimers

also
my impression is even though the amyloid is removed
there is destruction and some disease process thats going on
that has already started snowballing and may not be stopped
that may be why the memory decline isnt stopped completely
but
man i would take this stuff knowing that
it could give me extra time with my family
time that i would remember also while its happening

just think
if your loved one could have gotten something like this
they might have
made a wedding
maade an anniversary
seen a graduation
seen a birth

yes
i think it would have been worth it


if you havent donated to a walk to end alzheimers
consider donating to my younger brothers familys
team for tomorrows little rock walk to end alzheimers

here is the link
#joe nash

i was thinking just now
what if he could have gotten this medicine early on
what things would he have not missed in his familys life

the organicgreen doctor

alzheimers news-in memoriam

ALZHEIMERS NEWS-IN MEMORIAM

i thought about these two guys a lot last week
both were from arkansas

one was my brother joe who died 4 years ago
in the final stages of alzheimers disease

here is the blog i wrote about him after his death
he was the mirror i looked into
as
i saw myself
knowing that this is where i will be sometime in
the future
when i dont know
im doing what i can to slow it down

here is the blog
THE SMILE


the other person
also had that same smile
it was glen campbell
who died last week in that final stage of alzheimers disease

now i have read some criticism of his family
sending him on his tours
when he struggled so much at times trying to remember his lines
however
he was doing what he loved to do
he was able to do it longer than most would have

may he rip
when you get to that final stage of this disease
death brings peacefulness
to the person
and
their family

hopefully they are at peace


this last week i had my first visit at ucla
the worse part was the traffic
its like worse than than the worse austin traffic

i had to undergo reevaluation and reintroduction to
the aducanumab study
i am able to just pick up where i left off at ut southwestern

i am about the fifth one in the aducanumab study by
biogen here at ucla

i chose ucla instead of a private neurology group
since i wanted the connections to a research facility
in case i need to be in other studies in the future
i have found it makes a difference knowing the folks
and
knowing what new stuff is out there
when it happens
it will be happening here at ucla

they have the mary easton alzheimers disease center here
that does the different research
eg they are also doing one of the bace inhibitor studies
that will probably benefit folks who have no symptoms

they could be used like the statin drugs are being used
to prevent stroke and heart attacks
these bace inhibitors may help slow down or prevent alzheimers
time will tell on that one

the aducanumab study that i am in
has more promise for us with symptoms
although if it works it will probably be given
with the bace inhibitor before folks
develop symptoms

so i went down to the infusion center
got all hooked up again
took my two hours it took to get all set up
and
get in my infusion #6
then out the door into the throngs of the traffic

12 more to go until they put everyone
placebo and real drug on the real drug for another 3 years
then soon after we will find out if this study really works

next
more blood work and an mri of the brain at ucla in two weeks

so far
i have just some daily fatigue i experience
thats hard to separate whether its the infusions
or my aricept (donepezil) or my sleep issues or my chronic iritis
i am hoping its my infusions
since that would mean i got the real deal stuff
and
not the placebo

time will tell

i also volunteered for a substudy of this one
which does extra amyvid pet scans for the
bad stuff beta amyloid
to see if it really all got cleared out after a year
that is
if i got the real stuff

however i will never know if i got the real stuff
this first 18 months
thats part of the deal
they will know but i wont

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

why so early

WHY SO EARLY
it can hit early
this alzheimers disease


if you watch the new movie
still alice
thats what its about
alzheimers disease hitting at too young of an age
way too young


my younger brother was stricken early
like still alice
he was still joe

but like still alice
he looked so healthy and alert
you really didnt notice it unless you were really around
him a lot
then over time it all got worse

i watched a video recently of my parents 50th anniversary
from the late 1980s
i looked closely at my mom and dad
dad died just a few years later he was probably stricken even then
then
my mom was my age i am now
she was just 10 years away
i looked at her closely for signs in the video
for the disease was rampant as she smiled
and
as she seized the moment
then
still joe
was there at 40 years old
laughing and joking pulling pranks on me
having a good time
it was sad to think that at that moment in time
he was just about 10 years away also
the disease had been working on him for several years now
then
i looked at my older brother
handing my parents their 50th anniversary plaque
thinking as i watched all of us
he also was affected even then
he didnt know it

then i looked at myself
wow it was just starting on me that year
i just didnt know it either

it was like with the movie
hard to believe  still joe had alzheimers
he looked so healthy
look hes driving was working
doing a lot of the things he was doing before he was diagnosed
but
like alice
he got worse

tragic it is when it strikes so young
its not fair
cant life just let them live another 10 years or so
to finish up their productive years
but
no life is not fair is it
early onset alzheimers disease

i feel like if i do have alzheimers disease that i am lucky
i got to finish my career
enjoy some of my retirement
have a chance to squeeze all out of each day
something
i wouldnt be able to do if i was
still alice or still joe

when it strikes early like this
dementia
its more likely due to alzheimers disease
but
it also could be a disease called frontotemporal dementia
something happens to the frontal and temporal parts of the
brain
they shrink
and that part of the brain its function quits working right
they loose inhibitions
then they dont live long just a few years and they are gone

then

theres dementia of lewy bodies
probably the worst to have
it comes quick and can be and is i guess the worst to have
i call it alzheimers disease on steroids
paranoia hallucinations sometimes violent behavior
meds sometimes dont help
it seems when family members talk about their love ones
they seem so despondent
its the bad one
deposits form in the brain called lewy bodies thus its name

but
most will be alzheimers disease though

none are good ones

leaving friends and families all saying
they are so young
why so early


i hope that everyone will go see still alice when it
appears in your area
you if you have not had to experience what its like
on
the person with the disease
and
their families
then you need to feel it and see it
then
you will see why we all who are affected are so passionate
about
finding treatment
and
a cure

as soon as the special showing by the alzheimers association
link for buying tickets is available for this weekend
ill post it here and on facebook

come see the movie this saturday at 100pm
at the alamo drafthouse south lamar in austin
stay afterwards
ask me a question

see the movie
bring tissues
feel it
like those affected do

the organicgreen doctor

be aware this month

BE AWARE THIS MONTH

this month november is purple month
its alzheimers awareness month

unless you have had your head in the sand the
last few years
you have been hearing and reading a lot about
alzheimers disease

read this blog and you will read a lot about it
for sure
especially on fridays

the article that was in the statesman this last weekend
updating my story with possible alzheimers disease
came out at a good time to start the month off

here is my alzheimers awareness month schedule

today my wife she and i travel to dallas to ut southwestern
where i will have my annual mri of the brain for the
adni study that i am in
they put me in the mri scanner and put a marker on my
temple
they take extra closeups of the hypothalamus area
since thats where alzheimers starts
they then run it through a computer program that analyzes
the size of the hypothalamus comparing it to the previous
ones that i have had five i think
so subtle changes can be detected if the area has shrunken
as thats what happens with alzheimers disease the brain
shrinks like a grape turning into a raisin

now as i enter that mri all confined in that cylinder i
will be reminded of an article posted on the internet
about the lady who has some problems being confined
in that mri machine
warning there is bathroom humor in the article
if that offends you then
dont click here


then this weekend we will be doing the
walk to end alzheimers walk in little rock arkansas
walking with my family and friends on my brothers team
#joe nash
in honor of him and his familys fight with his long
journey with alzheimers
may he rip now


i will do five walks this year
3 i am on the organizing committees
but this one is the one
that bothers me the most when i do the walk


tomorrow sometime while im there
i will pause
and
have a moment of silence
thinking of him


then next monday i will be doing an hour and half
question and answer session on alzheimers to
a group in texas from 10-1130am at the cowan
auditorium in sun city georgetown texas
these i like to do as i let the audience decide what
questions and what direction the session goes

this month at www.austinregionalclinic.com
thats the clinic i use to work for
they will be doing an article for alzheimers awareness month
about me and with quotes from me on alzheimers disease
its not there now but it will be maybe next week

then later this month the texas capital chapter of the
alzheimers association will be posting at their website
and in the media and on social media
a video of myself and three other people affected by
alzheimers disease
when it appears i will post it here and on social media

so lets make this november
a good alzheimers disease awareness month
since
we are all affected in some way

the organicgreen doctor

crispy walk, flavanols, nilvadipine,

CRISPY WALK, FLAVANOLS, NILVADIPINE
for those of you who get the austin american statesman
this sunday look on page two of the metro section
for the patrick beach column
whatever happened to
its an article on an interview he did with me this week
ill post the link next week

also if you look at the top of this blog you can read
the article done on my story 3 years ago by mary ann roser
the medical writer for the statesman
or click here to read that article

tomorrows
walk to end alzheimers in temple texas at the pepper creek trails
starting at 1000am
will be a crispy walk in cool weather with a beauitiful clear skies

so i guess the warmup to be done by team member km will be
an important one for this walk
need to get those juices flowing blood circulating

we cant wait to enjoy this walk with those hoping to find a cure
or treatment for this awful fatal disease

donate and or join my team at
organicgreendoctor

here is the link to the walk
bell county walk to end alzheimers

so remember
this is a no charge event
donation is optional
you can show up and sign up at the registration desk

see you there

reminder
walk to end alzheimers in little rock next weekend at
the clinton library starting at 930am
we will walk with the team
#joe nash

this is my brother joes team
he died last year in the final stages of alzheimers
struck at such a young age in his early 50s
we need a few more donations to reach the teams goal
for this walk
help if you are able to


flavanols
these are found in certain foods but can be in high concentration in
cocoa
yep thats chocolate
the good stuff

that took cocoa and removed the flavanols
mars the candy company developed the method
it takes a lot of cocoa to get the flavanols for studying

so they took a lot of flavanols and gave it to older folks
then followed them over time
it was a 6 year long study
done in a reputable scientific method

what they found that basically folks who took these high
levels of flavanols went from a 60+ year old memory to
a 40 year old memory
documenting it with memory tests and with brain scans

problem is that eating just chocolate by itself would
require a huge amount to be eaten each day
sorry side effects would occur
it would be fun trying though

these flavanols seem to increase the blood supply to
a certain part of the brain that can be affected by
alzheimers disease early on
called the dentate gyrus

maybe one day we will take flavanols in a pill to help
our memory
add to that the resveratrol thats found in grapes and wine
take that in a pill also to help lower the bad stuff
beta amyloid

its chocolate and vino without all the pleasure associated
with its consumption


nilvadipine
this is a blood pressure medicine available in europe and
other countries but not in the us
it is in a class of drugs called calcium channel blockers
like verapamil amlodipine diltizem nifedipine etc
its used for blood pressure control angina control and
to improve circulation to the brain after strokes
its about to go generic
it has been around for years

now there is an enzyme called syk or spleen tyrosine kinase
which regulates inflammation the bad stuff beta amyloid
and tau protein
all three are implicated in alzheimers disease

research shows that it appears that nilvadipine may
block this enzyme and by doing so
reduces inflammation beta amyloid and tau
and by doing this may help slow down progression of
alzheimers disease

i think if this pill was available in the us
i could get it from mexico or europe
its is the one that i would take for my high blood pressure

kill four birds with one stone is what i would do
blood pressure
inflammation
beta amyloid
tau protein

its too bad its not available in the us
and
since its generic there is no big drug company
promoting its use here either
no big profit to be made i guess

so little things keep adding up in this fight for an answer
to ending alzheimers disease

we are getting closer it seems every month

help and join us in this fight

the organicgreen doctor