alzheimers news-its near you

ALZHEIMERS NEWS-ITS NEAR YOU

yesterday
i went to the alzheimers disease center at ut southwestern to get my
third infusion of the aducanumab drug from biogen
if it works or if it partially works
it will slow down the disease some

yesterday
i discussed with the center that i would be moving to santa barbara soon
they said i may have the option to switch to a site in california that is
participating in the study
eg like ucla

so
we are thinking about changing if its approved by biogen
if not
we plan to continue going to dallas each month to get the infusions
this study
for me
is too important not to do all i can to get this drug
it will be the only chance i have
to get something to help slow down the disease
since
when the drugs that are in the works now get here
my disease may be too far to take something to stop it

ie
now is my time
i have to maximize things

all this made me think of
those who have contacted me in the last month
via this blog or after my talks or in random encounters

the jest of what that say is
my family has alzheimers disease
i dont have any symptoms
i know i am going to get it one day
can i get in a study like yours

my answer is yes

for research folks are classified as
prodromal or prealzheimers-they have normal memory but have a positive
          scan called amyvid for the beta amyloid and positive spinal fluid
          levels of beta amyloid and tau
          this means they will probably develop alzheimers disease

mci or mild cognitive impariment due to alzheimers disease-they have
          mild memory loss and these biomarkers ie postive amyvid scans
          and positive spinal fluid levels of beta amyloid and tau proteins
       
alzheimers disease-they have more advanced memory loss and their
          biomarkers are positive

then
alzheimers disease is either mild moderate or severe
          or early mid or late

most of the new treatment studies are looking at
prodromal
mci or mid cognitive impairment
mild alzheimers

these are the three levels that may benefit the most since
there is not as much damage done yet in the brain
so the treatments may work to slow down or if we are lucky
to stop the disease

so those of you who have asked me
is there one of these studies i can get in to get treatment
even though i am not having symptoms

yes there is
you have to willing to know that you will probably get alzheimers

most of my readership lives in arkansas  texas  california

so if you live in these states
its in your family
you want to know if youre next
you want to be proactive and get pretreated
then
heres the links below for each state

there are 3 companies
there are others that are on the way

lilly  solanezumab-the study is called A4

genetech/hoffman-la roche  crenezumab-its the drug that was on
          60 minute and pbs recently

biogen  aducanumab-this is my drug    it will be doing studies soon on
          those with prodromal alzheimers disease

you can go to www.clinicaltrials.gov to search for these studies
or
click on the links below

in arkansas
look under arkansas near the bottom
there are three sites
jonesboro little rock and fayetteville

crenezumab study


in california
look under californa near the bottom of the page
there are multiple sites

crenezumab study

solanezumab study or A4


in texas
look under texas near the bottom of the page
there are multiple sites

crenezumab study

solanezumab study or A4   

if you are interested in being proactive
call the sites even though they may be listed as
not recruiting yet
sometimes they really are

good luck

our moving sale is happening tomorrow
rain or shine
everything is for sale
unless its a heirloom item that stays in the family
or
if the new homeowner has bought it
or
if we can stuff in our two cars

if you are a lover of chicken stuff or donald duck stuff
there is a lot to pick from

everything is priced to sell

here is the link to our rain or shine moving sale on saturday may 20th
country n moving sale

the organicgreen doctor

alzheimers news-todays the day

ALZHEIMERS NEWS-TODAYS THE DAY

two weeks ago the alzheimers vaccine study on solanezumab came out
the results werent promising
however there was a 15% improvement noted in those folks
with mild alzheimers disease
this vaccine an antibody against beta amyloid doesnt go after the
plaques that form from beta amyloid in the brain
my drug does though
also
it appears that for this stuff or any new alzheimers drug to be
effective
it has to be used in folks like me with minimal disease
or
those folks like some of you that have prodromal alzheimers
ie
you just dont have symptoms yet but the disease process is
going on and has been for several years

once you get full blown alzheimers disease it may be too late
for a treatment

the solanezumab study called a4 results will be out in a few years
its on prodromal folks

if any of  you saw the 60 minutes show on alzheimers disease
that was a story of using one of these drugs called crenezumab
in a large extended family of folks in colombia who will get
alzheimers since they carry the dominant alzheimers gene

this one works more like the one thats being used in the study
i have been trying to get in

well
todays that day
i passed hurtle number one
i got past the nurse screener
i have been accepted to enter the prescreening part of their study
on
aducanumab

this one i think is the most promising of all the drugs so far

npr article on aducanumab

this last week at a large alzheimers conference in san diego
the data from its phase 1 study was discussed

in folks with minimal symptoms
like me
not only did the beta amyloid get removed from the brain plaques
and the cs fluid around the brain
but
folks memory stayed the same or got better
the placebo folks who didnt get the drug
their memories deteriorated

there is a memory test commonly used in doctors offices
called the mmse
you get a score of 0-30
placebo folks deteriorated almost 2 points
treated folks didnt change or declined much slower
based on which dose of the drug they got

so for me i would accept no change or mild decline

the alternative to doing nothing
well
thats not good
its real bad

so today i get started on several more hurtles

today
my wife she and i make the trip to dallas
to the alzheimers center at ut southwestern
to start my journey
one i have been hoping for for 6 years now

it starts with an interview with the research nurse
asking me and my wife she lots of questions
all 1000+ of us in this national study go through the same thing

then
this visit or maybe the next visit if i pass this one
i get a lot of blood drawn
240 ml or 8 oz

then
i undergo that torture test
called neuropsych testing
which includes the mmse and other memory tests that the study is using

then
i undergo a neurological history and examination by the
studys primary investigator
a neurologist

then
this data is sent off to biogen the maker of the aducanumab drug
to decide if i go further in the study

if declined i will have an amyvid pet scan done privately
and
will move on with my life
looking for a another promising treatment
as
the clocks ticking on me

if i am accepted
i move to a spinal tap for beta amyloid and the tau protein
mri
genetic testing

if i am accepted based on these results
then i get the final test
the amyvid or amyloid pet scan
it will tell if i have the amyloid accumulated in the brain
if positive
im in
and
that means i know i have alzheimers disease for sure
well as sure as one can know without an autopsy of the brain

then
i will start infusions monthly
of a placebo ie water
or
the real deal

i have a 67% chance of getting the real deal
i have a 33% chance of getting the placebo

sorry i want the real deal
but
if i dont after 18 months or so they will switch me over to the real deal
for a total of 4 1/2 years of infusions

i do realize since i have the apoe 4/apoe4 gene
i have an almost 40% chance of having significant side effects
mainly headaches if i get the higher dose of the
drug
luckily few people have had to stop the study from these side effects

if it works
its all worth it

the real deal please

the organicgreen doctor

alzheimers news-bummer well maybe not

ALZHEIMERS NEWS-BUMMER WELL MAYBE NOT

last thursday
thats thanksgiving morning
i was sitting on the front porch where we were staying in nola
thats new orleans
i was drinking my strong morning coffee
since it may slow down alzheimers some
sitting in the morning sun on the cool morning
watching neighborhood folks walking by
some with their dogs
good morning i said
they return the same greeting
warm feeling inside and out i had
then
i started reading my news feed on my cellphone
there it was
solanezumab results are in

i got clammy sweaty i was
my heart rate jumped some
i knew what these results meant for those
with alzheimers disease and those who will get the disease
life changing

there was the word that seemed to hit me in the face
disappointing
the results showed that the drug use in mild alzheimers patients
was disappointing

i felt like i had been slapped upside the head

all the joy i had being in nola
went down the drain
i sat there for a long time
a long time
even let my coffee get cold


then
i felt real anxious anxiety it was
so
i went for a walk by myself in the neighborhood
nearby was a large cemetery
that stays locked at night
but lucky for me i guess the gate was open
so
inside i went
i just felt like i needed to be there
i slowly walked past the above the ground graves
looking at the dates
looking at when the person was born
when they died
wondering what they died from
some died young
some died old
some probably from trauma
some from probably infections
i wondered how many of them had dementia
had alzheimers disease
was it as bad back then

it when i think of it was strange that i was attracted to
that cemetery since i had toured it before

then
i gradually meandered my way back to our place
where we were staying
i felt melancholic all day

then
the next day i got a bad stomach bug
i think the drugs i took for the severe nausea masked
my melancholy
then
after a couple of days the melancholy gradually wore off
thanks
somewhat
as i read more and more about the drug study
and other similar ones
that are ongoing
one of them i am waiting to enter soon

there are 3 drugs called alzheimers vaccines
thats what i call them
they are antibodies against the bad amyloid that is thought to
cause alzheimers disease
they go into the brain and remove the beta amyloid
if it works the persons memory gets better

solanezumab
made by lilly
the first to publish results officially on december 8th
it will show when given to folks with mild alzheimers disease
it didnt work

the more i have read from alzheimers experts
i realize like them that the drug was given too late in the disease

its like giving lipitor a statin to someone with a stroke or
a heart attack
well it aint going to help them
but if given months to years earlier they wouldnt have a stroke or
heart attack
so
the thinking with these alzheimers vaccines

if its given before symptoms start
or
maybe given when
symptoms are minimal like the statin used in stroke prevention
then it might prevent alzheimers disease or at least slow it down

so
solanezumab is being used in a study  called the a4 study
in folks who have no memory loss but who have
a positive amyvid pet scan for the bad beta amyloid in the brain
those results should be out in five or less years

crenezumab
made by genetech
its a similar drug that works the same
but is slightly different
it if you didnt see it was featured on
60 minutes last week
if you are remotely interested in a cure for alzheimers disease
click here to link the video and story 
read and weep
i know my she and i both did

basically in the colombia study the drug is given to folks who have the dominant gene
for alzheimers disease but do not have symptoms yet
they all will get alzheimers disease
they will get the drug for 5 years then the results will be published
if it works it will delay or stop alzheimers from occurring

aducanumab
made by biogene
thats my drug
thats the drug study i have been trying to get in
it works similar but slightly different from the other two

it will be given as a monthly infusion for 4.5 years
to folks like me with minimal symptoms but with
positive memory tests   positive spinal tap results   positive apoe4 gene results
then
finally a positive amyvid pet scan
the scan that shows if you have the bad stuff beta amyloid
ie you are going to get full blown alzheimers
then
you will be given the drug monthly over the above time period
or
get the placebo

i passed the first test
a screening of my medical records my memory tests my apoe4 labs
my spinal tap results shows that i may qualify for the study

then
yesterday i was officially notified that i now will be started in
the screening process for the study
next
my wife she and i go back to dallas to the alzheimers research center
at ut southwestern
to get reinterviewed
to get memory tests required by the study
to get examined by the neurologist running the study there
to get a unit of blood for testing
so
if i pass those tests
then
its a spinal tap
an mri scan
then
if i pass those tests
then
its the anticipated amyvid pet scan
if its positive
which means i have alzheimers disease
then i am in

i would then start infusions monthly of an intravenous infusion of
antibodies against the bad beta amyloid for up to 4.5 years

i will get the drugs or i will like in the crenuzamab study
get the placebo
if i get the placebo in a couple of years i will then be given
the real deal the real drug or up to 2.5  years
by then
they may seek approval for it to be on the market
if it works

this drug in preliminary studies in phase 1 showed
not like the others
showed the bad beta amyloid was removed
and
showed on memory tests that folks memory got better

so i am hoping this stuff works

so my melancholy has been lifted this week
as some hope appears to be that this stuff may work

i have spent every day since last week
thinking a lot about what is happening and is going to happen to me

since i was diagnosed i have lost several people i know
to cancer stroke heart attacks accidents other neurology disease
but
i am still standing living my life as i want to
they
sadly
arent with us anymore

for that that i am still here with mostly intact memory
i am thankful

the organicgreen doctor

but can we afford it

BUT CAN WE AFFORD IT
thats what i thought when i read about these two treatments
one for stroke
the other for cholesterol which if controlled can help prevent
stroke heart disease and maybe alzheimers disease

now i have an elevated homocysteine level that some
neurologists believe is associated with an increased risk
of stroke heart disease and alzheimers disease


the treatment is easy
take folic acid 0.8 mgm a day
thats the amount in a prenatal vitamin

i take folic acid (folate) every day
and
buy it in a bottle of 120 for $9

a cheap treatment easily available without a prescription

a new study showed that those with high blood pressure that
took folic acid reduced their risk of stroke by a significant amount

so for $36 a year i could reduce my risk for stroke by a third
check that one off my list

the new alzheimers vaccine that is being studied extensively is
called solanezumab
if it works and comes to market
its expected to cost $20,000 a year

remember the ending of that drug ...umab

my ldl the bad cholesterol that increases ones risk for
stroke heart attack and alzheimers disease
is quite elevated off medication

the first time i had it done it was 240
thats heart attack stroke high

using diet and exercise that was lowered to 140
a reduction of about 42%
at a cost of $0 a year

adding generic lipitor for $5 a month at a cost of $60 a year
the ldl is lowered to 80
a reduction of 67% of my ldl
at a cost of $60 a year


now a drug company has developed at new drug
are you ready for this
called evolocumab
its an injection like the new alzheimers vaccine
that produces antibodies that grabs ldl cholesterol
and removes it from the circulation
at
a predictive cost of $10,000 a year
to get the ldl down to a 60% reduction

now i did that at a cost of $60 a year

i like my way better dont you

now
i can think of one patient i had who would have benefited
from taking this injectable medicine
sky high ldl like mine but she could not tolerate any medicines
of course there is no way she could afford this medicine

so thats the question we are going to have to answer about these
new treatments

can we afford them
and
are there better cheaper treatments

the organicgreen doctor

thanks

THANKS

thanks to the hundreds of you who read this article from the
austin american statesman yesterday
doctor keeps alzheimers at bay
and
responded with your kind words

why i may have alzheimers
i had a normal mental status evaluation that changed in 3 years to
being abnormal
i personally noticed those changes
my parents and younger brother had alzheimers disease
i carry the apoe4/apoe4 gene that carries up to a 20x increased risk
of getting alzheimers disease
the levels of beta amyloid and tau protein in my spinal fluid are
abnormal
the pet scan for beta amyloid or amyvid will be done soon


for those who asked
here are the studies i am in

the alzheimers disease neuroimaging initiative or adni study
the largest most important alzheimers study ever done
i get lots of blood drawn neuropsych tests mri scans pet scans for
glucose metabolism pet scans for beta amyloid or amyvid and
spinal taps for beta amyloid and tau protein

a study of the new alzheimers blood test which may be 90%
accurate in predicting if you will get alzheimers disease
itprobably will be available in 5 years

then hopefully in december
a study of solanezumab an alzheimers vaccine infusion that may
remove beta amyloid from the brain


first
i am not doing anything different really than thousands
of americans who volunteer to help other folks every day
i know at the habitat builds and the meals on wheels there are
those dedicated folks who are always there doing their part

there are many ways to volunteer
even helping an older neighbor or friend
a disabled one
or
someone temporarily in need

do volunteer
i can speak from experience now after 4 years
the one that benefits the most from volunteering
is that person in the mirror
you

what i am doing to ward off alzheimers disease is not some
secret treatment
its been researched and documented and written about
for years
its mainstream medicine

now one thing to remember is that
in my opinion this doesnt really stop alzheimers disease
once it get rolling
its going to win eventually
but
it slows it down a lot and hopefully makes the symptoms
that you see in people less severe
kinda like
a snowball going down a hill that hits against obstructions
along the way to slow it down
but
eventually it will get to the bottom of the hill
but
it will not be as big

i do think that if a person can start all this preventative stuff
when they are young
even when they are babies and infants and toddlers and
little kiddos and teenagers and young adults
they can maybe prevent themselves from getting alzheimers disease
or
slow it down so much that they will die from something else
when they get real old

eat a heart healthy diet or mediterranean diet
or
if you  are so inclined a gluten free diet sorry i cant do that one
or be a vegetarian or vegan

dont do excesses in your life like eat too much gain weight
drink too much smoke at all use drugs

exercise

get an adequate sleep each day
this one is turning out to be important

control diabetes blood pressure cholesterol

be happy stay mentally active stay socially active

do this and we are talking about a lot of disease prevention
besides alzheimers disease

i have also got a lot of questions about this vitamin and supplement
thing im doing

if you arent going to do this stuff above then dont worry about the
supplement and vitamin thing

i first read the article on the research that was done
here is the full article
then
i discussed this with my primary care doctor and my neurologist
then i had screening labs done looking for problems

i found a low vit d and low b12 which i wasnt expecting
and am taking replacements for them
had my levels not been low i wouldnt have taken those supplements

my homocysteine level was quite elevated
it may be associated with an increased risk of alzheimers disease
its not definitely proven but i as i have said before i dont have
time to wait for it to be proven
so im taking folate  b12 vit b6 each day to lower that number

since i know that i have abnormal levels of beta amyloid in my
spinal fluid and will soon know if my amyloid pet scan is positive
i have elected to take stuff that may lower beta amyloid levels

remember this isnt proven these supplements do this yet
but in animal studies they do

one resveratrol was used in a big study whose results will be out
later this year or next year which will say yes or now if this works
this is the stuff from grapes
it takes tons of grapes to get enough for a daily dose so  thats why
its been put in a pill
if its disproved with this study i will probably stop taking it

some of the supplements i cant tolerate like melatonin
and ashwaganda which may lower beta amyloid and help
some with sleep
i got these god awful disturbing dreams with it

there are 7 things to do that we all should be doing anyway
like those mentioned earlier

so i didnt just start taking this stuff without looking at each
one individually as to whether it fit my circumstance
i look at the side effects and interactions with my medications
like my blood pressure medication or cholesterol medication

if i could access nilvadipine for my blood pressure i would
change to that drug
see last fridays blog

plus
remember there are not many options right now for me
except to do these things
if im wrong this may help then i havent lost much
if im right this may help then ive done myself and my family
some good

please do not just start taking this stuff without looking
at each one closely discussing it with your medical providers
remember these are as much medicines as those prescriptions
you are taking

and also remember this is not a cure for alzheimers disease
its like aricept (donepezil) it slows down the symptoms
but probably doesnt stop the disease

so what do i notice
i feel better
i feel more alert
i have gained more sleep
i dont get leg cramps like i did ( a side effect from the aricept)
i dont feel as tired later in the day
i have less morning nausea

so something is helping in this regimen
im not sure what it is
but its enough i plan to keep on taking it

so again i say
thanks for the interest
dont worry if a cure comes i will be overposting about it


vote tomorrow even if you dont vote like i do

the oganicgreen doctor

veni vidi vici

VINI VIDI VICI
thats what i did yesterday


as i was driving on i35 to dallas yesterday
i looked over to the left
there in a break in the clouds was the eclipse of the moon
it followed me for miles as i drove along
it was hard to take my eyes off it
then as the dawn broke
there to the right from the east
was the bright large orange sun peaking through
a break in the clouds

a sign is what i thought both of these things were

yesterday i underwent the annual reevaluation for
the adni study that im in at ut southwestern

yesterday i got a message from the alzheimers association
where you could click on a link to see where the money
goes when you donate to the walk to end alzheimers

there it was the adni study was prominent on the list
so i want to personally thank those of you who have
donated to the walks this year and in the past
i would not be able to be in this study without your support

i was asked a ton of questions
then i was sucked of a large quantity of blood
i told her she should have just pulled off a pint of blood
instead of putting a little bit in all those tubes
im sure there were 20 of them

then
off to the torture test the neuropsych test
this one i have down good
but
i still have the same problems in the same areas each
time i take it
i do notice ive taken so many of these that i already
know the answers

then after a brief pause where i took the video below
i then went to my neurology appointment to see the
neurologists

the bad news is i dont qualify for the A4 study since i have
memory issues and since i am on aricept  (donepezil)
the good news is that i may qualify for a new study
for people in my category that starts up in december
i will go up and do the interview and testing for this
study
i think if im correct that i will get the beta amyloid scan
that i am wanting

then
if accepted i will be put into either the treatment group
or the placebo group

the treatment group will be receiving monthly infusions
of the iv alzheimers vaccine solanezumab which should
bind the bad stuff beta amyloid from the brain
and if works slow things down or prevent the advancement
of the disease
at least for the 36 months of the study
if i get the placebo i will just get water

no placebo please

this is the biggest thing happening right now in the battle
against this disease
whether this approach will work we will know over the next
5 years since there are a lot of folks being treated with
this solanezumab

more when it happens

then i discussed at length the possibility of using the
36 point treatment that was discussed in the
recent article on research done at ucla

tomorrow i will go into more detail on this
i start the regimen this morning

if it helps it will show up on these neuropsych test
and i will know before anyone else knows

i do realize now that my mom dad and younger brother must
have noticed things long before anyone else did
research is showing thats the case
im living it i dont need research on that one

i also went over all my neuropsych test for the last 4 years
and they are all stable
but i personally feel some slippage has occurred
i notice it frequently

then when i had my break before my neurology appointment
i wondered the campus looking at all the new landscape they
were putting in at the new hospital addition there

in the back of the clinic i go to there was this long row
of purple native plants that looked like indigo spires or
similar plant
i did this short video of all the monarchs that were there
mesmerizing it was
like i was meditating

i think its a sign dont you

donate and or join us this weekend for the
travis county walk to end alzheimers at camp mabry at 1100am
on sunday october 12
our team is austin regional clinic


the organicgreen doctor

important day

IMPORTANT DAY
this is an important day today for me
in my fight against the possibility of having alzheimers disease

this morning i leave at 500am to make the 3 1/2 hr drive to
the alzheimers research center at ut southwestern in dallas
for my first of several appointments today


the first one is a follow up on my annual visit for the
adni study or alzheimers disease neuroimaging initiative study
where i have several annual tests done
i had mentioned two months ago that funding was delayed or
discontinued for this study long term
this is the largest and most important study thats ever been done
on alzheimers disease
hundreds of research articles have be published from the data
yes some of my data is in there from this adni study

so today i get to repeat a lot of what was done in august
lots of questions especially memory questions
lots of blood drawn for rna and dna analysis chemistry lab tests
alzheimers blood test etc
an examination by a neurologist
then
i am so lucky
i get to repeat the much dreaded torture test
the neuropsych test
the examiner and i have become friends she has given
me this test so often

then
on another date next month i get an mri scan of the brain to see
if any brain shrinkage has occurred or especially if the area
where alzheimers starts the hippocampus has shrunken at all


then sometime this morning i do an interview for a new research
study called the A4 study
AntiAmyloid in Asymptomatic Alzheimers study

basically they are looking for folks 65-85 yrs old
normal mental status
with positive biomarkers-abnormal pet scan for beta amyloid
(they do this scan on all volunteers)

then the selected folks will receive what i call the alzheimers
vaccine solanezumab as an infusion for 36 months
or a placebo
no placebo for me please

if it works it will remove beta amyloid from the brain and the
disease process will be slowed down or stopped
several other studies are going on similar to this all over the world

you would think folks would be jumping in line for this study
a potential game changer in alzheimers treatment and prevention
but
no they are having trouble finding folks to join the study

me im el numero uno in line for this study
up front i am

if you are even remotely kin to me you probably are a candidate
for this study

please if you know someone who may qualify
click on this link for more information on how to volunteer
we cannt find an answer unless you volunteer
in texas its ut southwestern and baylor college of medicine houston
in california its ucd, uci, ucla usc, ucsd, ucsf etal
in okla its tulsa university
look your state up for the nearest locale
ark its ut southwestern in dallas or tulsa university in okla


then after lunch today i meet with the neurologist that sees me
at ut southwestern for my annual followup visit
this is not a research visit
its the real deal like when you see your doctor
i chose to be followed there instead of in austin since it has
worked out better for me coordinating my care

i mainly go to get my refill for my aricept (donepezil) which
may be slowing down my symptoms i hope


examiner.com

then
i plant to discuss a new study from ucla
i mentioned it in last fridays blog
its called
reversal of cognitive decline a novel therapeutic regimen
by dr dale bredesen
i plan to do a longer more involved blog on this on friday

basically its using life style changes ive written about before
then based on evaluation and labs using vitamins and supplements
i counted 16 of them total

his results
9 out of 10 folks studied got better
the one that didnt was a more advanced alzheimers patient in a later
stage of the disease
the other folks were early like me or more advanced then i am

so i think it may be beneficial and worth trying
whats to lose right

i will discuss my getting on this regimen with her
even i think if it means i cant do the A4 study or the adni study
thats how important this may be

so today is an important day for me
a crossroads maybe
a cure probably not but more of a way to slow down
and delay things

the organicgreen doctor