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

dear ms b-im practicing

DEAR MS B-IM PRACTICING

ms b
when you look at those pictures
dont be jealous
im just practicing
for when you get in elementary school
and
i can volunteer at your school garden

several weeks ago when it was found that we
were moving here
the teacher messaged me
to see if i could help in her school garden

now this person knows a lot about gardening
doing a lot more at her home
than she can do at school
but
she cant do it by herself
so
she needed some help
someone who could help her get her school garden
back in shape

now
i try to be a helper helper
not taking over the whole program
but providing my advice based on my experiences
as an organic gardener
and
my exposure to helping with school gardens

i never try to take over the whole thing
i just try to help them in areas they need help
whether its supplies or advice
advice you know is cheap

so
i started volunteering once a week for an hour and a half
at the school where my two nephews attended
where my daughter in law attended
helping the teacher out

she is the teacher that years ago
inspired my wife to go into teaching
my wife she would come visit
and
would volunteer in the school
she fell in love with teaching
after being there
her inspiration coming from the teacher

so my initial job was to clear the weeds out of these
beds
oh my oh my
thats all i could say
theyll never get all that grass out of those beds
they might as well just start mowing it like the lawn

however
i was given a few kids who raised their hands
who wanted to help in the garden
i made them give me an imaginary quarter to help
they seemed to enjoy that

now ms b i could just visualize you
digging around in that bed
getting dirty and pulling weeds

so these kids
i let them climb into the bed
with diggers in hand
they talked and picked and dug
i thought theyll never get all this stuff pulled up

well i was wrong
their method worked

at the end of the day
this is what the beds looked like
all grass free
for now at least
ready to plant whatever seeds or plants that fit
into their program

ive noticed in my experience in planting gardens with kids
they tend to eat whatever they plant
if they get involved

so at the end of the day
i must say
a job well done

think ill practice again next week

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