alzheimers news-we need your help

ALZHEIMERS NEWS-WE NEED YOUR HELP

i am a week away from receiving my final infusion in the i dont know if i am getting the placebo or not aducanumab study
after this infusion i will go into the next phase of the study which i will call i know now i will not be getting the placebo but will be getting the real thing aducanumab study

my journey all started when i decided to enter a study to feel like i was doing my part to find a treatment or if we are lucky a cure for this disease

i saw my mother and my younger brother struggle with this disease

so i entered a study to be in the normal control group
thats when things changed
i got diagnosed with mild cognitive impairment the precursor stage to early alzheimers disease
it changed my life and my familys lifes

i entered the adni 2 study for 5 years then from there went into the aducanumab study
which uses monthly infusions of an antibody against the bad beta amyloid in the brain
this stuff being deposited is where alzheimers starts
stop it and you might slow down or stop alzheimers
it seems this is what it may do

so how did i find these studies
i went to these two sites
clinicaltrials.gov
trial match via the alzheimers association website
these led me to the alzheimers center at ut southwestern in dallas

why
i wanted to do my part

what is one of the two major obstacles to finding a cure for this disease

well
go look in the mirror
thats right
you

its volunteers for these studies
without them
these new treatments wont happen

help us
find a cure
volunteer

here is an article from the national institutes on aging that lists multiple websites for where you can volunteer for studies
there are studies in every state


then
the other obstacle is money
research doesnt just happen
it needs money lots of money
the feds now pour more money in for research
but we need more
bill gates threw in millions for research
thanks bill

a lot of funding and edcuational services come from the alzheimers association and the other independent ones in each state

most of these sites have alzheimers walks to raise money

you can go to www.alz.or/walk and type in your location and they will give you your nearest alzheimers association walk to end alzheimers

in texas
this alzheimers texas independent alzheimers site has several walks in central texas

in arkansas the arkansas alzheimers has several walks in that state

in the los angeles area
the alzheimers greater la  has its walk on october 28th
this is the group i am doing a alzheimers panel on early memory loss at the ucla medical center santa monica on september 29th

in santa barbara
i will be doing the alzheimers association walk on november 3rd
i will be posting a link to my teams page ie organicgreendoctor soon so you can sign up and or donate to our team

i will be doing a talk at the valle verde center in santa barbara on october 4th and for the alzheimers association


in southern arkansas
my younger brother joe died in his early 60s from alzheimers disease
he was diagnosed in his mid 50s
his diagnosis and death and my moms diagnosis and death are what drives me to find a treatment or cure for me and those of you who are destined to be diagnosed with this disease

my mother nell was diagnosed in her mid 70s and died in her early 80s
they both lived in southern arkansas

his wife and children have a team in the southern arkansas walk to end alzheimers on september 22nd

they had a long journey with him
they want to honor him
they want to help find a treatment for his kids and grandkids and their cousins and their uncles and aunts and for those others of you who are destined to be affected by this
awful alzheimers disease

here is the link to his team
#team joe nash
if you can sign up and walk with them and or donate to the cause

for those of you who couldnt make the long trip to little rock in the past to support his family
and well also to support the nash family in our fight against this disease
show up to show your support for them and for us

so
volunteer for studies
walk and or donate to the cause

we are
so so close
to finding a treatment and a cure


im doing all i can to advance the cause
we need all yalls help

the organicgreen doctor

alzheimers news-post walk thoughts

ALZHEIMERS NEWS-POST WALK THOUGHTS

these walks are what keeps the alzheimers engine going

these funds raised
provides education about this terrible disease
provides an opportunity for families to come together
to share their experiences with this disease
provides a chance for family and friends to support those
friends that have been affected by this disease
help fund research no matter how small to reach
all our final goals
a treatment
a cure
a way to prevent
alzheimers disease

we all there had the same goal
some of us more affected than others

this is the group that walked with us on saturday
our team

it was made up of friends and former patients
folks from both my wife shes and my lives
supporting us as we march forward looking
to reach our goal of a cure or treatment

even these two were there
wearing shirts from our first walk several years ago
they werent even born yet
but they have these shirts on
walking for the cause
both parents were former patients

there were folks there from
habitat for humanity
meals on wheels
my former clinic
former patients
my wifes shes friends and former teacher friends

it felt good to be with them
knowing we had this type of emotional support
and financial support
for the future

later many of us got together for lunch at a
nearby restaurant
to continue our celebration
a celebration of life

this walk was different
it felt different
as
i knew as did they that this one would be our last one
here in central texas

i feel good
that i somehow have left a mark in this area
hopefully advancing awareness for the fight against this disease
that folks will remember for a long time

thanks
to all who supported us here
emotionally and financially
as we move forward against this disease

you will not ever be forgotten

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

alzheimers news-26 weeks in

ALZHEIMERS NEWS-26 WEEKS IN

today marks the 26th week into the biogen aducanumab study
for hopefully slowing down this disease
for me for now if i didnt get the placebo

for the rest of you if this stuff actually works
it will be available to you eventually

eg those of you who have  matching dna to mine
this may be a drug you will get
some of you even before you have symptoms

thats where all this is heading

this 6 month testing today is important
for this drug this infusion to work
it has to do two things

first   it has to remove the bad beta amyloid from the brain
and
keep new amyloid from being deposited

second   the memory testing has to show no change or
an improvement in memory

this second one has to happen or this stuff isnt helping
the first one well that happened in everyone who has had this
in early studies

so for me
this is an important day
although i will not ever see the results
but
when the memory tests are done
since i have had enough of them
and
have actually administered them to folks
i know how i do when i take them

first
they isolate us my wife she and i
like you know when the police isolate suspects
well i guess thats not a good example

they ask her questions about how i am doing
has she noticed things etc
then
they ask me similar questions to compare our answers

we my wife she and i always joke
i do better than she does on some of these

then
its several different memory tests that are done
similar to the moca and mmse that are done in a lot
of doctors office
i scored low 7 years ago but have improved over that time

when all these are put together
they are compared to my memory testing done over 6 months ago

if i got the real stuff they should have improved
if this stuff works
and
if i got the real stuff


then after lunch
i get the pet scan called the amyvid scan
it tests for the beta amyloid thats accumulated there
the scan on the left above is positive
the scan on the right above is negative

i also decided to do a substudy where they do more pet scans
than on the other study subjects
even though like the memory tests ill never see the results
the more data they can get the better the results are at the end
of the study

so
if this stuff is working if i got the real stuff
then
my pet scan will look better
at the end of the study
it should be all clear

again though
the memory has to not get worse or get better
for this drug to be a success

the amyvid scan uses a radioactive substance to highlight
the beta amyloid in the brain
if its all red like in the initial scan above on the left
then the scan is positive
if its still red after the study is done
then the stuff either it didnt work or you got the placebo

everyone in the study has a scan that is positive at the beginning

if its not red after getting the infusions then it looks like
the scan on the right
it means the amyloid is all gone
thats right its all gone
initial testing in other studies show this stuff removes the amyloid

this is an important visit
as in one year this part of the study ends

when they look at all the results then
if it appears to be working and there are no significant side effects
then
all of us will get the real drug infusions for another 3 years

what i hope is
i got the real drug to begin with and not the placebo
i think i may be getting the real drug based on some of my side effects
then
i hope this stuff really works

help us find a cure

my walks


alzheimers texas williamson county walk september 23rd


santa barbara walk to end alzheimers october 28th

the organicgreen doctor

we did it

WE DID IT



last february i got the email letting me know that the
central texas chapter
now known as the
alzheimers texas
would be pulling out of the alzheimers association
like other well established chapters did
like
san diego los angeles new york chicago etc

it seems that all the funds raised would have been  sent
to the national office
leaving less control
and
less funds going back into the
central texas area for education and support

so
the board and directors
felt it would be better for the central chapter to be
independent
which it had really been operating as for 25 years
being a strong willed chapter

i was skeptical but decided to continue to support them
as i have for the last 6 years

i have seen and see up close where the money goes
from these fund raising events
all going to the local cause of alzheimers
all staying here in central texas
i just like the feel of doing it this way

for this area its the best way i think

so the funds we raised for our alzheimers texas this weekend
all $40,000+ will all stay around here
to pay for local research
and
education about this awful disease
alzheimers disease

this weekend our team
the organicgreendoctor
got together to join the 500+ walkers
at san gabriel park in georgetown texas
for the williamson county alzheimers walk

all for the same cause

most of us walking are affected by alzhiemers in some way

this young lad has been walking with me for the last 6 years
a former patient he lost his grandmother recently to this
awful disease

here he is today

this cute as a bug little girl
cuter than a ladybug
another former patient
has walked before
she is walking for me dr duck
but
also is walking for her grandpa who has alzheimers disease

so we slowly walked over the 2+ miles
all for the same cause
teary stories being told along the way

i recognized
former patients
folks that have been to my talks
folks i worked with
folks with the disease
folks in the alzheimers research studies like me

we were all walking for the same cause

a treatment and cure
for our families behind us
and
for you and your family

so
we did it this weekend

thanks to all of you who either donated
and or gave your moral support


we also have another alzheimers walk my wife she and i are doing
with
the austin regional clinic team
at
the travis county alzheimers texas walk
at fort mabry
saturday october 8th 2016

come join us

the thankful organicgreen doctor

alzheimers news-lets do it

ALZHEIMERS NEWS-LETS DO IT



as i sat in the committe meeting for the Alzheimers Texas walk
which is at san garbriel park this saturday
they said
as the captain of a team
you can determine what percentage of the teams donation
goes to each category

i thought to myself
mainly thinking of myself and my family
i want 100% of my teams donations to go to
research
that would mean that the funds our team raised
would go to one of the universities in texas
that does alzheimers research
the biggest one is where i go in dallas
the alzheimers center at university of texas southwestern

easy choice i thought

then as i went through the next several months
looking at the caregiving and educational classes that
Alzheimers Texas does in central texas
looking at the caregiving and educational seminars
that they sponsored
some i was a presenter for
or
i manned the Alzheimers Texas table
so
folks could come by and ask me questions
that they did
lots of lots of questions
they just needed answers

i thought to myself
they really need education
and
help
where to get help was a common question

thats when i changed my mind
on where the funds would go

i decided that i would allow the funds our team raised
to go back into the pot
to be used as most of the funds will be used
mainly research and education

for those about to deal with this disease for the first time
for those in the middle of dealing with this disease
for those whose loved one is now not with us
i realized that
the educational part of Alzheimers Texas
is much more important

as many of you know who have read this blog
this is why i am an avid supporter for these
alzheimers walks especial the Alzheimers Texas walks here in
central texas

my mother and younger brother died with the disease
my father probably had it when he died
my older brother may have it now
i have the diagnosis of mild cognitive impairment amnestic type
i may have it also
i take aricept (donepezil) and am in alzheimers research studies

i saw us dealing with all this
without knowledge and help to understand what was happening
to us and our family

these funds help to do that
we here in central texas are lucky
to have such a well established Alzheimers Texas group
this is their silver anniversary
the 25th one
to provide all the educational services to help us understand whats
happening to us

so
tomorrow
is the big day for our walk team
to raise as much as we can to fund all this
thats the only way it gets done

no federal or state grants or monies are used
no national office to send down funds
its all of us locally helping this area


lets put the boot to alzheimers

so
we will walk tomorrow
at
the williamson county Alzheimers Texas walk at san gabriel park
in georgetown texas
registration starts 830am
preceremony at 930am
walk starts at 1000am

come join us
if you cant you can donate below to
donate and or join my team organicgreendoctor

we cant do it alone

thanks again for all of you that will participate
by your presence tomorrow
and or
by your financial and emotional support

the organicgreen doctor

alzheimers news-smell it good first

ALZHEIMERS NEWS-SMELL IT GOOD FIRST



you know how when you go out to eat at a restaurant
order a bottle of wine to drink with your meal
the wine person brings over the bottle
lets you look at the label
ok you are suppose to say
then
he will open it in front of you
they always seem to use the simple opener they
carry in their pocket
then
the cork is popped
i think you are suppose to smell the cork
then
they pour a small amount in the glass
you are suppose to
swirl it around several times
sniff sniff sniff it
then
take a taste
then
say its good thank you

well
all this i must say
seems fufuish to me

i just say
pour me a full glass please
i dont swirl it or smell it
i do what you are suppose to do
i drink it

now
this week i read an article that changes my approach
from now on
i plan on swirling and sniffing that glass real good
so it looks like the swirl you see in a toilet
when you flush

heck
after reading this article i  plan to
stick my nose deep down in the glass
and
snort me a big snort of that stuff into my nose
hold it as long as i can
so it can get absorbed into my smeller nerve

yep im agonna sniff all my wine real good
from now on
even if i drink box wine

what the heck are you talking about
you gone nuts or something

no
they by they i mean researchers
did a study on 13 people who were
sommeliers

if you dont know what that is
im not gonna tell you

you will need to just google it like i did

so they took 13 sommeliers and 13 non sommeliers
did scans on them
what they found on the scans were that the areas of the
brain that handles smelling and memory
were
larger and thicker
in the sommeliers

these are the areas of the brain
where alzheimers attack first
making this part of the brain atrophy as the disease progresses

the thinking is that these
sommeliers
you looked it up yet
have a less chance of getting alzheimers
than
if you are a non sommelier

so
what ive deciced to do
is to snort my wine
be fufuish when i drink my wine
so dont think ive changed from the simple soul i am
when
you see me
swish sniff swish sniff slow taste
my merlot
then
take a deep snort of it

plus
my 36 point regimen for memory loss prevention
has now changed to a
37 point regimen

we are one week away from our williamson county
alzheimers texas walk to raise funds to support
research here and education services for alzheimers

this only happens if we get donations to fund these



lets put a boot to alzheimers
www.txalz.org/walk

donate and or join my team organicgreendoctor
for the alzheimers texas williamson county walk on september 24th
in georgetown texas

donate and or join our team austin regional clinic
for the alzheimers texas travis county walk on october 8th
in austin texas

to join the team you will need to register first
to only donate just hit the donate button

the organicgreen doctor