alzheimers news-youre on

ALZHEIMERS NEWS-YOURE ON

thats their life once it starts
youre on
24/7

it doesnt ease up until things get worse
or
something bad happens

bad happens like
a fall that breaks a hip or cracks a wrist or bruises a brain
or
they wonder off somewhere and they cant be found

last year we did the pier to pier walk from hermosa beach to manhattan beach
in the introduction ceremony the story was told of a family whose mom and wife wandered away from her home
never to be found

i think of caregiving for a person with dementia or memory loss
like taking care of an adult 2 or 3 year old

you have to be on 24/7
feeding
cleaning
toiletting
dressing
watching alertly for all the things they can get into
like a 2 year old will

youre on 24/7

over the last year ive watched in our condo complex a couple
he was a oil engineer that traveled the world
we only met him last year when he was in the alzheimers world

i found him wandering off multiple times
once down the street at the bus stop trying to get into someones car
that was locked
so
i walked up to him
hey how are you doing
lets go for a walk around the condos
i knew he really liked that
so he mumbled his scrambling words that came out of his old engineer brain that was all miswired and short circuited from the alzheimers
he tired to tell me something but the words got all scrambled up inside and came out as gibberish
if you have had an alzheimers loved one you know what im talking about

he shuffled his feet
wearing his old disheveled clothes that didnt match
with the shirt tail half in and half out
his zipper down
he had that homeless look
he had a home though
he just didnt know where it was
he wouldnt bathe
he wouldnt eat much
he wouldnt change clothes
she his wife was 24/7
she had become not only 24/7 on but 24/7 fatigued and sleep deprived

our condo courtyard is undergoing an extensive update to the electrical
sewer and water lines that has the place looking like some canal city
with all of its trenches
trenches that were just waiting on him for his next escape
which eventually wouldnt end well

this danger plus the marked fatigue and burnout of the caregiver and
his more decline to that final trip down into the alzheimers abyss
well it all added up
forced them to move him into a facility to help care for him

he is safe now
he is probably happy
she can get rest
she visits him everyday

there is this point where that decision is made
its a hard one i know

for me
ive asked my wife she to make that decision early
to not wait too long

for those caregivers
look for help
there are lots of caregivers groups
hospice can be used early
organizations like the alzheimers association and alzheimers groups have
information on all this
go to a caregiver meeting
youll see a lot of others in your situation
youre not alone
but
you may feel that way

when its time to let go of them to the care of others
freely do it with no guilt
just know
that usually its better for you and for them

donate and or walk with you local alzheimers walk

my younger brothers team in the south arkansas walk to end alzheimers on saturday september 22nd is called
#joe nash


my team in the santa barbara walk to end alzheimers on saturday november 3rd is called
organicgreendoctor

click and donate and or walk with us

the organicgreen doctor

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-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-alzheimers flowers

ALZHEIMERS NEWS-ALZHEIMERS FLOWERS

this is the our team for the alzheimers texas walk we did in
september in georgetown texas.
thanks to those who walked that day

when you go to the walk to end alzheimers there are 5 flowers
to chose from

blue is for those of us with alzheimers

purple if you  have lost someone with alzheimers

yellow if you are supporting or caring for someone with alzheimers

orange if you support the cause and a vision of a world without alzheimers


fox6news.com

white is the new one
its the one so far no one gets to carry
its the one i want to carry one day
its for the first alzheimers disease survivor

so you pick the flower that represents where you fit into the
alzheimers picture

i have been able to carry all of the colors as i write about below
just not the white one
yet

then you place them in an area where they are all placed together
in the promise flower garden
they spin in the breeze
there always seems to be a breeze
at the walks i have been to

its like mother nature knows
to send down a breath of breeze to spin those flowers
since
she knows what it means to everyone
the visual of the spinning flowers
many with loved ones names on them
well
i
at least
tear up

so in the opening ceremonies
someone from each flower group
speaks for a few minutes about why they are carrying that color

well
i get the blue one
since my mci is due to alzheimers disease

here is what i plan to say

good morning
thank you for being here for this walk to end alzheimers and supporting
us in our fight against this disease

i am here representing with this blue flower
those of us who have alzheimers disease

i have mild cognitive impairment due to alzheimers disease
i have been diagnosed for over 6 years
i take the alzheimers drug aricept (donepezil)
i am in a large experimental drug treatment at ucla that has some
promise to be a potential treatment for the disease

i have seen alzheimers disease up close and personal
its a ugly awful disease

on my blue flower are 4 names

nell
my mother

joe
my younger brother

both died from alzheimers disease

charles
my father probably had it when he died

charles
my older brother has it now

so this is why i am walking to end alzheimers today
the same reason many of you are walking today
to find a treatment or cure for this awful disease
so that in the future no one will have to be carrying these blue flowers
since
when a treatment is found we would all be able to carry the white one

thats my hope for the future

thank you

support us at our next walk
or
donate and or walk at your local walk

santa barbara walk to end alzheimers october 28th

the organicgreen doctor

alzheimers news-brians song

ALZHEIMERS NEWS-BRIANS SONG

each morning i get a news feed that lists approximately
10 articles on alzheimers disease
some are newspaper articles or news articles
some are research articles
some are videos
this morning the one that caught my eye
was an article with a link to two podcasts
on a man named
brian

he has early onset alzheimers disease

i stopped what i was doing
made myself listen to his story
in these podcasts
on
how he was diagnosed
how he is living with his diagnosis

my suggestion to you if you have memory issues or
have a family memory with memory issues
 that you listen to these podcasts

if you or your loved one ends up having alzheimers disease
there is probably nothing that has happened to you
or will happen to you
that will equal how your life will be devastated
emotionally
financially
spritually
physically

it doesnt ever end well

as i listened to the podcast
i sort of had some flashbacks
to my early neurology visits and my early diagnostic tests
and my early cognitive or memory tests

now listening to his story
i realize he is ahead of me with his diagnosis
but his worries and his thoughts
i have had and am having

a lot of what ive done and what i choose to do
is knowing that what he is experiencing
is in my near future

yes it was surreal to hear him say things that i have thought
that i know is coming down the pike for me

so
if you and your family are going to be affected or if you
are affected by this disease
you might listen to the podcast

the more you know that can help you be ready the better
although
you really cant be ready for it when it happens

here is the link to podcast 1 on the diagnosis

here is the link to podcast 2 on living with the disease

yes i teared up listening to all of this
knowing sometime in the future i will be where he is
my family will be dealing with what his family is dealing with
i hope i and we are better prepared when it happens

support us at our next walk
or
donate and or walk at your local walk

santa barbara walk to end alzheimers october 28th

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

alzheimers news-diagnose before any symptoms

ALZHEIMERS NEWS-DIAGNOSE BEFORE ANY SYMPTOMS

this is world alzheimers month
its the 6th leading cause of death in the us
some think its number 4
in the county we are living in it is the 4th leading cause
of death here
there are 5,000,000 folks with the disease in the us
by 2050 there will be 16,000,000 folks in the us with this disease

i read this article from the wall street journal titled
an alzheimers diagnosis-before any symptoms

now i found the article interesting
if you want to know about getting diagnosed earlier
for yourself or your family
you should read this article
heres the link to it

now i didnt need to read this article to learn about
all of this
as
i have lived this the last 7 years

as i have meandered through the private neurology world
then the alzheimers research world as a patient

as i have written this blog researching what i write about

as i have given lectures on alzheimers disease

as i have answered questions from folks at q and a sessions

i have learned all this stuff thats in the article
first hand i must add

i read today about a new research study thats starting up
it will run for 8 years at usc and other universities
folks who are diagnosed with

prealzheimers disease-folks with  no symptoms but with positive tests
or
mild cognitive impairment due to alzheimers disease-folks with mild
symptoms but with positive tests

will be given one of these
an infusion of a vaccine like the one i am getting now at ucla
or
a pill that prevents the bad amyloid from being produced and
deposited in the brain
or
those unlucky ones will get that placebo thing

the question of whether identifying folks before they get symptoms
or when they get early early symptoms
then giving them treatment long term
will it make a difference
we will find out in 8 years

although
studies like the aducanumab study i am in or the crenezumab study thats
on going now will partially answer that question in 5 years

we are on the brink
of finding an answer

in this article all the testing they write about
has oozed over from the research world into the private medical world
such that these tests may get done by a private neurologist
seeing you or a loved one for the workup for memory loss

so in 2010 if you could fast forward that to 2017
if when i went to the neurologist
even before i had a memory test done

i could have had
memory tests which would have showed short term memory issues

genetic blood tests for the early onset or dominantly inherited gene
and for the late onset alzheimers gene the apoe 4 gene

spinal tap analysis for the beta amyloid and tau
these levels become abnormal as the disease progresses

an amyloid pet scan that would show if the beta amyloid was present
if you have even early alzheimers it will be positive
if it is negative you probably dont have alzheimers

we are almost there now to be able to identify if you have it
before symptoms start
these studies like the ones i have been involved in will show
if this is true

now
a lot of thought and preplanning needs to be done
before you have these done
especially if you are in the prealzheimers state

it can be i must say quite overwhelming to get the results
i liken it to finding out
that you have huntington disease
or
that you have a terminal cancer

it requires a lot of soul searching and contemplation
to get these diagnoses
the end result is the same
all ending in death from the disease
some quicker than others

this may be the limitation of folks having the testing
for alzheimers
they might not be ready to know

organizations like the alzheimers texas and alzheimers association
and us against alzheimers can help with the process

you
can take care of your health
can get involved in the support of research and education
by
volunteering with these groups
helping us with our walks to raise money to help the fight

go to the alzheimers texas site www.txalz.org to find the central texas
location of their walks

go to the alzheimers association site www.alz.org to find their walks
located all across the us

we cant do it without your help

my walks


alzheimers texas williamson county walk september 23rd


santa barbara walk to end alzheimers october 28th

the organicgreen doctor