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-did you know that

ALZHEIMERS NEWS-DID YOU KNOW THAT

did you know that
i have an appointment on february 28th to have my
amyvid pet scan
this scan will show if i do or if i dont have alzheimers disease

if its positive
i probably have alzheimers disease
remember nothing in medicine is 100%
i will be in the study called the
aducanumab study by biogen
i soon after would start monthly iv infusions of the drug
aducanumab an antibody against beta amyloid

if i then get the real thing and not the placebo
my scan in a year will go from brightly positive
to brightly not positive
hoping that it correlates with an improvement in memory

the results should be out in over 18 months
so we will know
if it looks like it works i plan on continuing the
extension of the study for another 36+ months
if it works
i will not want to get off it

my thoughts are that this stuff only works if you get
to the disease sooner even sooner than where i am at now
it will work best probably if used before symptoms start

now if its negative this scan
i got one helluva reprieve
its like being told you dont have terminal cancer after all


did you know that
in texas you can sign up to be monitored starting at 50 years old
at no cost
baylor at houston  texas tech  university of north texas
ut southwestern dallas  university of texas san antonio
these universities are part of a long term study that will do
labs memory tests neurological exams and maybe mri
annually
here is the link to find out more
www.txalzresearch.org

here is the link to where i go
alzheimers disease center ut southwestern

if you have time watch the video my wife she and i
did for the center thats on that page

did you know that
learning a second language early in life decreases your chance
of developing alzheimers disease
these folks develop a brain reserve from using certain parts
of the brain more over the years

you know that
afroamericans have a higher incidence of alzheimers disease

did you know that
by following the mind diet you can lower your chance of
developing alzheimers disease when you get older
heres the link to the mind diet

did you know that
controlling you blood pressure cholesterol weight diabetes
decreases your chance of alzheimers diease

did you know that
if you exercise regularly you can decrease your chances of
getting alzheimers disease

did you know that
poor sleep from insomnia sleep apnea restless legs etc can
increase your risk for alzheimers disease

did you know that
1 in 5 dollars of medicare is spent on alzheimers and other dementias
by 2050 that will go to 1 in 3 dollars

did you know that
smoking increases your risk of developing alzheimers disease

did you know that
head trauma can put you at risk for developing alzheimers disease

did you know that
if someone in your family has alzheimers disease then you are at
risk for developing it

did you know that
you can help find a cure and help others
by
becoming involved in your local walks to raise funds
go to the alzheimers association website www.alz.org
to find out where your walk is
there are also independent alzheimers organizations in some states
or
in central texas
go to the texas alzheimers website www.txalz.org
and or
write your congressperson to encourage them to support
funding of more alzheimers research

we can not afford to not do something to help

a treatment or cure is within our reach
possibly within my reach soon

help us help yourself help your family help others if you can



i will be speaking along with other alzheimers speakers at
the alzheimers symposium in temple texas
on
friday april 28 2017
my topic is my story and clinical studies

there is no fee and a light lunch is provided
here is the link to the symposium for more information
and for registration information
http://www.txalz.org/education/conferences/

the organicgreen doctor

alzheimers news-this is it

ALZHEIMERS NEW-THIS IS IT

three years or so ago i decided not to have my amyvid pet scan
for beta amyloid that was scheduled to be done for the
research study that i was in
called the adni study

why
as i discussed with the research director
i read where there were some new treatment studies coming
that
if you had a recent amyvid pet scan you would be disqualified
from the treatment study
so
i canceled the scan

then last fall
i was told i probably would not qualify for the one study
called the aducanumab study
that i had identified from my reading to be the treatment
study that had the best chance of slowing down
or
if we are lucky stopping the disease

then
i got a phone call
we reviewed all your clinical records and research records
we think you may qualify

i am in i said
this gets all priority in what i do

a brief summary of the study
the aducanumab is an antibody against the bad beta amyloid
that is thought to be the cause of alzheimers disease maybe

the antibody goes into the brain and removes it from the brain
it also dissolves the plaques that form

in phase 1 studies the amyvid pet scans seen above
went from abnormal to normal in a few months
this correlated with an improvement in memory

now they biogen are looking for over 1000 folks across the us
to start receiving this stuff as a monthly infusion for 18 months
then maybe another 36 months after that

for those in the study who dont get the placebo
there is a chance their disease will be slowed down
or
if lucky completely stopped

i am vying for one of 12-15 slots in the study
at the alzheimers research center at ut southwestern in dallas

if accepted and if i receive treatment
it could be life changing for me and my family

so far i have made it through two of 4 steps to get qualified
for the study

yesterday
while sitting eating lunch at a habitat for humanity build
i reached in my pocket for my phone
looked at my messages
there it was
a message from the research centers director

i admit i did get a little clammy and tachycardia
as i opened the email

there was the message
dr nash you passed the mri
congratulations
now you can be scheduled for the amyvid pet scan
can you do it next week

i quickly messaged them back
this has priority in my life i said
pick a day and time and i will be there

i got up and went to my truck
sat in the seat
and
i cried

why
this amyvid pet scan will show if i definitively have
alzheimers disease

no matter what it shows
its good news

if its positive
thats good news
it will verify what i already know from previous testing
and
from what i know from somewhere deep inside me
but then
i will be in the study getting treatment for this awful disease
that could open the door to a new treatment
for alzheimers disease if it works

if its negative
thats good news too
it means i dont have it
however
i dont think it will be negative

now
i am not in this study because i am a doctor or because i am
actively involved in being in alzheimers studies
these clinical trials are available to all of you and your loved ones

it does require time and effort to be in these studies
but its all worth it
to have a treatment and maybe a cure for this devastating disease
which can only occur with the help of volunteers for
these studies

heres a link below for more information on where these studies
are being done
www.clinicaltrials.gov

here is the link to the alzheimers research center at ut southwestern
on the first page
that is me in the video that was done on my story
its has an interview with my wife she and me and  my neurologist and
the research director

we need your help to find a treatment and cure

the organicgreen doctor

alzheimers news-this is the one

ALZHEIMERS NEWS-THIS IS THE ONE

as we were driving up to dallas from the country n
early on tuesday morning
on our way to do more testing for the
aducanumab study
i turned to my wife she
who is along with me on this journey
i said
this is the one for me there might not be another one

now
i keep up with all the research thats going on
let me tell you
there is a lot thats happening in alzheimers research
yes there should be more
we need more funding

for those of you who are programmed to get alzheimers disease
yes
soon
in the next few years whether or not you will get it
well
you will be able to be identified via testing most likely
blood tests
that will tell you
well you got it

however
if you are 50 or under there will be treatment available
to slow it down or stop it in its tracks
maybe

if we are lucky
this will happen sooner for those who are older than that

so for my younger relatives behind me
nephews nieces kids maybe siblings but definitely the grand ones
there will be something that can be done

now back to the present
for me
this study
the aducanumab study
is my hope for a treatment to slow it down or stop it

as i look back to whats happening in the research
i realize that for me there is not another one out there
that will be here now to help me
since
the clock is ticking

if this progresses too far there is and never will be anything
that will stop that amyloid and tau thats accumulated
and caused destruction
this all happens before symptoms worsen
so
when symptoms worsen
you know its really too late

so
thats where i am at
i am on the verge
i need something now to stop and slow its down

so
i underwent the next to last hurtle this tuesday
we spent 5 hour there again at the alzheimers research center
doing
memory tests
having my wife she interviewed again
then
getting an hour long mri of the brain
that follows the research protocol for this study

why
i asked why do i have to keep my eyes open for 30 minutes
oh he said
thats for a functional mri
opening the eyes
makes the brain to start working more
so the mri can look at the active brain
im sure they were concentrating on the hippocampal area
since thats where the disease starts
and
where it gets the worse first

now i wont get the official reading on any of these
all i will hear is
you passed
you failed

if i pass then i go to the amyvid pet scan which identifies the
bad beta amyloid that has accumualted up there
heres the link to tuesdays blog with the scan pictures from the
nature magazines article

if i flunk it ie i have something else going on up there like
a small stroke or tumor or mass or swelling etc
then im out
there for me will not be another chance to stop it this early

if i do progress to the amyvid pet scan
if its positive
i am in
thats bad news but also real good news

it also means i definitely have it
ie
alzheimers disease

if it is negative
well thats good news too
i dont have alzheimers disease

so if i make it to the amyvid pet scan
well
no matter what that one shows
it will be good news

so as we were leaving the radiology department
my wife she and i stood in front of this
chihuly statue that is two stories high
worth a million dollars
we were both thinking about all this
knowing
we are about to start the beginning of
a new journey together

for better or for worse

the organicgreen doctor

are things better

ARE THINGS BETTER

almost 4 years ago i took a neuropsychological examination
at the alzheimers center at ut southwestern in dallas

there was a portion of the test where i had to identify pictures
for some reason there were several pictures that i knew what
they were but i couldnt remember their names
sphinx hammock pretzel pelican eg
this is one of the items that gave me a low score on the initial
exam
now since ive taken this test 8 times in the last 4 years
i have learned the test
so that i get all those pictures correctly
in fact on the last test a few weeks ago i was 100% correct

was it because i learned the test or i am improving

my guess i learned the test i know thats the major part of the
reason
but i do think my memory is stable

there are lots of other parts of the test that you cant learn
as the answers are randomly changed each time
so
i still have short term memory problems but they dont seem
to have gotten worse

i was recently able to review my scores over the last few years
you can see the numbers improve from test to test then
they leveled off
still off slightly like a level where the bubble is
not quite in the lines

this week i got my official letter from the study
saying that my short term memory tests had improved
but i realize part of that was from learning the test

its been three weeks since i have been on the new
16 vitamin and supplement regimen that was discussed
in this article on
reversal of cognitive decline from the ucla department of neurology

(warning dont start this regimen without discussing it with your
doctor)

i am following the regimen but cannot tolerate the ashwaganda
and the melatonin
my sleep has improved slightly though even though i am not
taking these two supplements that would have helped my sleep

i notice a degree of alertness and pep that are due to something
in the vitamin and supplements i take
plus since my b12 and vitamin d was low that should be
eventually returning to normal

now i plan to continue this regimen until its disproved to not
be effective

a longer study i think is planned at ucla which will be expensive
and lengthy
the results will probably be years from now
these people need to be followed long term really to know how well
this works and even if it works to stop the disease

my guess its that it slows down the process but doesnt stop it

then studies will need to be done on folks years before symptoms
start to see if can actually prevent alzheimers disease
thats 20 years of taking stuff and changing your life style
before you know if it did any good or not

the studies that need to be done will be expensive
the only way they can get funded is by you
via
the national institutes of health (nih)
and
the alzheimers association
as
all the things are generic and cannt be patented by some company
so they can make millions
its all at your grocery store and drug store and up to your willpower


so
you can help you know by donating and or walking at a
walk to end alzheimers near you
click here to find a location 

the two walk to end alzheimers i will be walking in next month
are

bell county walk to end alzheimers at the pepper creek trails
in temple texas starting at 1000am on saturday november 1, 2014
team name   organicgreendoctor

little rock walk to end alzheimers at the clinton library
in little rock starting at 930am on saturday november 8, 2014
team name   #joe nash
in honor of my younger brother and mother and father

so help us find out if this new regimen will work for all of us

the organicgreen doctor

didnt make it, help us

DIDNT MAKE IT
yesterday i was looking forward to going to ut southwestern to
the alzheimers disease research center to do my annual
followup visit for the adni or alzheimers disease neuroimaging
initiative
but
i didnt make it
because
the night before i could not go to sleep
1000pm then 1100pm  then midnight then 100am then 200am
i mean 2 eyelid open not being able to go to sleep
then
i dozed off awakening
i mean wide awake at 400am
knowing we needed to leave in a hour at 500am to make
the long drive to dallas for the appointment

no way i thought as i got up
there is no way i can make that drive and stay awake
and
there is no way i will be able to do my 2 hr neuropsych test at
1100am and be at my best
my most alert self
heck im already working at a deficit there 2 standard deviations below
what is normal for my age and degree of education

so to be accurate and to be fair to the study and to make sure
i didnt fall asleep driving
i canceled my appointment that morning
with the plans to return again in the next few weeks

why couldnt i go to sleep
wasnt nervous at all about going
didnt nap too much the day before in fact i cut back some on that
didnt drink a lot of coffee late or eat a lot of chocolate candy late
which would let the caffeine in all that do its thing

i take aricept (donepezil) each morning and i sometimes will
have the problem of insomnia but not this bad
it seems as if there is too much aricept in that pill that day
maybe the quality control sucked that day it was made
thats what it feels like
when i first started taking aricept (donepezil) this is the way it
made be feel only this was the worse

one thing is of course when you are in my shoes
is that one of the things that happens with alzheimers disease as
it progresses is that it begins to alter sleep patterns such that
sometimes a person with the disease cant sleep at all at night
that
i am afraid was what i was and am worrying about

i dont want to be one of those nighttime wondering folks you
read and hear about

this morning i read this article that said that 7 hrs is the sweet spot
on the amount of sleep you need to get each night
a recent memory test study showed that those who got 7 hrs
did better than those who got less than that and
those who got 8 hrs of sleep

for me 2 hours just didnt cut it last night

HELP US
many of you know that i do volunteer work for the
williamson county habitat for humanity
i do the landscaping for the houses trying to do the best we can
with limited funds
we get some money left over at the end for landscaping but
sometimes that money gets siphoned off since the landscaping is
done last

so i have set up a crowd funding site just for the landscaping for the
next habitat build in jarrell texas
any money raised will be used only for this houses landscaping
our goal  is to  make the yard as xeric as possible but to make it
attractive to the eye and have it as the best yard in the neighborhood

so please go to my site at gofundme to read about it
and to make a donation if you are able to
so far we have raised $200 in rock donations and $100 in donations

click here to donate
landscape for habitat for humanity

the organicgreen doctor

trim, alzheimers answers maybe

TRIM
yesterday i blogged on trimming time
here is a link to the blog from central texas gardener for more
on pruning and trimming with links
on what to trim and when

ALZHEIMERS ANSWERS MAYBE
the theory of alzheimers is that beta amyloid accumulates in
the brain
this accumulation is what causes the spiraling destruction
of alzheimers disease

if you can stop the beta amyloid production and stop its accumulation
and remove it if its accumulated
maybe just maybe you can prevent or treat alzheimers

if you wait too long and allow destruction to occur then it may be too late

you know me
at least some of you do
i seem a normal healthy person
few can detect i have a problem
heck yesterday i had to convince a social security worker that
i could handle my own financial affairs
i did
my wife she was happy about that

i carry the double gene apoe4 and have short term memory loss
my parents and younger brother had alzheimers disease
so the odds are i have it also
i am on aricept (donepezil) for this possibility

but
i may be too late for this treatment since if i have alzheimers disease
as i may be too far along this path

my wife she and i went to the alzheimers research center at ut southwestern
last weekend to a brunch where they discussed research that was
being done

three new studies that are being started nationally will be done there
as one of the studies sites

the a4 study
basically they will be doing neuropsych tests on folks who have no
issues
do the beta amyloid pet scans called amyvid
and
do spinal taps for beta amyloid and tau proteins those two proteins that
become abnormal in the spinal fluid in alzheimers disease
all three of these tests become abnormal before the disease is noticed

then those who are positive will be placed in a study using one of the
new alzheimers vaccines called solanezumab
the vaccine uses antibodies that attach itself to the beta amyloid and
removes it from the brain
thus preventing the development of alzheimers disease
thats the theory and hope

the study subjects will be placed either in the antibody group
or a placebo
no placebo for me
there is a 50% chance that i would be in a treatment group
i already know my beta amyloid levels in my spinal fluid are abnormal

my problem is that the study requires you be 65 and im not quite there yet
dang it

if you are kin to be and are 65 or older you are a good candidate for this
study
or if you are worried or at high risk
they need people to volunteer for the study
the center serves folks from oklahoma arkansas louisiana and texas

you have to have intial scans neuropsych tests to see if you are at risk
if accepted
you will get monthly infusions of the new alzheimers vaccine or get placebo
if you are in the vaccine group
and
if this vaccine works
and
if you are
getting alzheimers you will not get alzheimers disease or the progression
will be slowed
the study is programmed for i think two years
if it works this drug may be on the market in 4 years

i personally want to be in this study bad but  im one year too young

but there are other studies coming up using this same new vaccine
but not until next year

time is of the essence

you may contact the alzheimers research center at ut southwestern at
214-648-9343
ask for kathy koch
or
go to www.alz.org to find a study in your area


there is another study starting up at the alzheimers research center
using the same vaccine in folks who have early alzheimers disease
my problem on that one is that i am not far enough along in the
disease process to qualify


then another study they will be doing is called the sniff study
using nasal insulin
sniff it up the right nostril it goes to the right brain
sniff it up the left nostril it goes to the left brain
it manages to go right to the smeller nerve the olfactory nerve
and travel bypassing that blood brain barrier to get directly to
the hippocampas where alzheimers disease starts

it raises the insulin level there and forces more glucose into the
brain cells
slowing down the disease and maybe preventing it

my spinal tap guy
the one i jokely accuse of rupturing my disk last time he did mine
is the head study person for the study
no thats not what caused my ruptured disk
that was years in the making

my spinal taps i know they sound bad didnt hurt
actually i didnt feel anything
but i did when they drew my blood

so these three studies are available in this area
you again can call the alzheimers research center at
214-648-9343
ask for kathy koch
or
check the clinical trials section of www.alz.org
for your local centers at
the alzheimers association website

we need you help
your kids nieces nephews and the future generations
need your help

we wont know if this works unless you and i volunteer
please help us

remember
saying i dont want to know may not be a valid excuse anymore
as
maybe in the future you will want to know so you can be treated


when you call them tell them i sent you
dr nash
the
organicgreen doctor