alzheimers news-here comes round two

ALZHEIMERS NEWS-HERE COMES ROUND TWO

i am preparing for two presentations over the next 3 weeks
one an alzheimers panel that i will be on answering questions about having mild cognitive impairment from a moderator and the audience at ucla medical center in santa monica
then
another doing a 20 minute presentation on telling my story with my diagnosis followed by questions from the audience at the valle verde facility in santa barbara
then
a usc professor wants to interview me about being diagnosed while i was practicing medicine

then
yesterday and the day before i started the long term extension that will last another two years and maybe longer of the biogen aducanumab study
this time i will either get the 3 mg dose or the 6 mg dose of the aducanumab

since i have the apoe 4 apoe4 gene i cant get the larger 10 mg dose since apoe 4 folks run the risk of having brain bleeds on that dose
the 10 mgm dose is the dose in the phase one study that worked the best
it cleared all the amyloid out that showed on the original amyvid scan in the phase one study
my two doses that i might get still cleared most of the amyloid but not all of it

in the first part of this phase three study im in now i either got the placebo or the other two doses
if i got the real stuff then they leave me on that dose
if i got the placebo then i get randomly the 3 mg or  6 mg dose
i want the 6 mg dose
well actually i want the 10 mg since i dont mind a little brain bleed
since
the option of doing nothing
well
that option is a hell of a lot worse than a little brain bleed
especially since most folks recover from the brain bleeds without effects
in fact if you get a bleed they just lower the dose then work the dose back up to the original one

i am so glad to get rid of the placebo cloud
have i lost ground by being on the placebo or have i wiped some of that bad stuff outa there

so all this alzheimers stuff plus getting ready for the alzheimers walk in november
see below
i feel almost like i have ptsd
i had to rethink about all thats happened in the last 10 or so years re alzheimers in my life
most if it is not good
my mother died
my brother died
my older brother was diagnosed
i was diagnosed
i had to quit work
i have made it my mission to go out there and talk about it freely
you ask me ill talk about it
i can see how ptsd folks do better being in the open and talking about their issues

i worry about not seeing my grandkids graduate from high school
i especially worry about not being around when mr h will need a lot of help
i worry about my wife she when she has to be a caregiver
i worry abut my two sons
i worry about my other siblings
i dont want any of them to have to deal with this
i think about my dad dying of a heart attack
i know he was headed down the alzheimers journey
man he spared himself and all of us a lot
i think about my mom and brother going down that alzheimer path to the end

when i do all these alzheimers things i do
sometimes its hard to make myself do them
i feel sad but no im not depressed
dont worry i get screened 4 times a year for depression
i cry sometimes as i practice my presentations or write my blogs
but
it really is therapeutic for me

i really hope that others can learn from what has happened to me
especially
the caregivers
please please take care of yourself


so
off i went yesterday afternoon
i had my amyvid pet scan that shows that bad amyloid upstairs in  my brain
thats the one that on me looked like this 18 months ago

they gave me the radioactive stuff in an iv then waited 30 minutes then into the pet scanner i went
with it whirling whirling sounding like a washing machine spinning a load of clothes
when its over
what i would give to just take a look the screen

since then i would know
did it work did it work
or
did i get the placebo
ill never know

for now im looking forward way out into the future as far as i can see
im never looking back
only forward

im doing all i can to slow this down
but
will all im doing work

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
click above to see his team page

his course with alzheimers bothered and bothers me a lot
we were a year apart
he died not long after i was diagnosed
when i looked at him as he worsened i felt like i was looking in a mirror
i really thought when i was diagnosed that today i would be where he was when he was first diagnosed

if you live in south arkansas and know his family show up tomorrow and support them
and the fight against this disease

it means a lot to them

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

click the link above and donate and or walk with us

the organicgreen doctor

alzheimers news-2 more to go

ALZHEIMERS NEWS-2 MORE TO GO

yesterday at the ucla infusion center i received #18 of my infusions of biogens aducanumab the drug that is given iv and is an antibody against the beta amyloid protein thought to cause alzheimers

it removes the amyloid plaques from the brain
it also removes any free floating beta amyloid in the brain
it also activates the garbage cells called microglia that clean up debris that accumulates
so
it works several ways  which is different from the other alzheimers amyloid antibodies being studied

as i explained to the infusion nurse yesterday i chose this study to be in
i identified it when information about the drug was first published
i watched it carefully

i tried to get in one study called the a4 study using another experimental antibody called solanezumab
which was given in this study to those who dont have symptoms but have positive pet scans for beta amyloid the hallmark of alzheimers disease
these folks are called prealzheimers
so i didnt qualify

when i initially tried to get into the aducanumab study i was turned away
that didnt stop me from trying though
i even foregoed my last amyloid pet scan in the adni 2 study i was in for 5 years starting in 2010
since i knew that doing that scan if i tried to get accepted into the aducanumab study would disqualify me since there was a rule that if you had a recent scan you couldnt qualify

once they obtained all my records and prescreening info though they accepted me in the study especially since their amyloid pet scan was positive

so im either prealzheimers or i have mild cognitive impairment thats due to alzheimers disease

hopefully whatever i have this stuff will probably help in someway to slow the disease down
we should have results in a couple of years that will tell us if it does

so yesterday as i left
i realized that i have two more of these left to do
before i advance to the final stage in three months
thats when all of us who want to continue will all get the real drug for another 18+ months
none of us will be on the placebo

now
i dont know if i got the placebo or the real drug
i had a 67% chance of getting the real drug
i was willing to take those odds knowing that after these 18 months
that my chances of getting the real drug are 100%

so yesterday as they ran the saline flush in my vein after the infusion was donei thought
man i wonder how im going to feel in 2 months when they flush that last one

ill be a happy guy for sure

i have now had 18 infusions into my vein on my left arm
the last 3 times they have had difficulty starting my iv in that arm
so they switched to the right arm this time

i was saving that arm for the round two that starts in october
but
i decided yesterday i dont really care where they put it as long as im getting the real stuff
heck i told them they could put it in my neck vein if they wanted

the biogen stock
biogen makes this drug
has shot up a few times recently
i think the financial world knows something about this drug
plus they have a another sister drug thats further behind in the research world in a phase 2 study that is also showing promise

so maybe
just maybe
all the effort my wife she and i are putting in may be worth it

heres hoping

the organicgreen doctor

alzheimers news-how is your blood pressure at 50

ALZHEIMERS NEWS-HOW IS YOUR BLOOD PRESSURE AT 50

what we are finding is that things that happen in your middle age years have a big influence on whether you will get dementia or alzheimers disease

this week this article flowed across my news feed
click here to read it

recently the ama and other groups changed the new limits for what they called high blood pressure

previously it was 140/90 or greater was high blood pressure
now the new guidelines say 130/80

a lot of yall just got diagnosed with high blood pressure
which i may add is probably a good thing
for your brain

it seems from the long lengthy study that if you are in the 50s and you have a blood pressure at or over 130/80 then you are at an increased risk for getting alzheimers disease when you get older
a significant increased risk

apparently over 60 the risk isnt as great if its over 130/80

you can also be also at an increased risk of getting risk of cardiovascular diseases like heart attacks and strokes and heart failure

i think back to my 50s and it wasnt unusual to see my blood pressure at that level or above frequently
probably if the new standards had been in place then i would have gotten on my blood pressure meds a lot sooner than at 60

if you are obese or diabetic or sedentary or sleep deprived or under lots of stress or have untreated depression or anxiety or have a poor diet and you add this new high blood pressure number to all that bad health stuff
well
folks the odds are in your favor that your spouse and kids will be caregivers much earlier than they want to be

wives
check your husbands numbers especially if they are middle aged
if they are elevated and especially if they have these other risk factors
well their future is in your hands well actually theirs

you also might google
long term care insurance
long term care facility
how to prepare for medicaid for nursing home care while you are young
how to be a good caregiver at a young age

same goes for husbands

so how is your blood pressure at 50
if its not normal
now you know what to expect as you get older

if you are in my ancestry.com family tree then you might be a little more worried since that apoe 4 gene makes all of this worse

know your number
do something about it

the organicgreen doctor

its going to be a long day

ITS GOING TO BE A LONG DAY

summer solstice link

now if you move in the alzheimers world you may see the longest day in a different way than what we do in the summer solstice celebration in santa barbara

today is the longest day of the year
dealing with alzheimers disease in your world makes this day exceptionally long
if you have someone you know who has this disease or an acquaintance whose dealing with this in their family
then reach out to them today
they may be wore out and could use some cheering up and support

also
donate or volunteer somewhere or some place
you can go to www.alz.org and find what and how to donate and get involved


this weekend is the summer solstice celebration here in santa barbara
the parade is on saturday
there is festivities starting tomorrow through sunday

recently while watching a documentary on the history of santa barbara there was a section on how this parade got started

it almost didnt happen
since
the folks who started it were antiwar probably pro marijuana hippy type protesters
they  were allowed to do the parade ie they got a permit with the understanding it wouldnt be some antiwar vietnam protest
the organizers were mostly young adults

over the years the summer solstice and parade has grown to where it is now

i think of it as santa barbaras version of mardi gras on a smaller less raunchy scale

all of the floats are human powered
there is a lot of dancing and bright colors
its sort of an eclectic parade

there are waves of bands playing at one of the large parks for 3 days
no
theres no beads or shirt lifting going on that ive seen

we like to get down where the parade starts as its less crowded and we get to see the parade with a first look

later in august there is the fiesta parade that is probably larger and seems more formal but it is also one that we enjoy seeing
this one though the summer solstice patade seems to fit our personalities better

it may be a long day everywhere else
but
here
the days if they are longer are worth the extra light and brightness today

paradise at its best

today i will be remembering
mom dad my younger brother
on this longest day this purple day
get involved

the oganicgreen doctor

alzheimers news-blank stares

ALZHEIMERS NEWS-BLANK STARES

if your loved one has had or has alzheimers disease
you know
what
blank stares means

its the look that they all seem to get near the end

my mom and my younger brother had it
i hope that i dont last that long
i dont ever want that blank stare

jay allen is an up and coming country singer
whose mom has alzheimers disease

he wrote and sung this song about those
blank stares

the video starts with a phone call from his mom
if your loved one has had or has alzheimers disease
expect to tear up
youll recognize this message since you probably heard
something like this yourself

now i started crying when the message started
and cried all 4.46 minutes of the video
my eyes are still teared up as im writing this

listen closely to the words
we all have felt them

here is a link to a new article on the video
and
here is the you tube video

we all should listen to it

if you are crying after you watch and listen to this
that means you probably had a loved one with the disease
listening helps

the organicgreen doctor

alzheimers news-taking these increases your risk

ALZHEIMERS NEWS-TAKING THESE INCREASES YOUR RISK

that is according to this article from the british medical journal

acetylcholine is used in the brain nerve cell connection to transport signals
across from cell to cell

if acetylcholine levels drop in these connections
a persons memory will be affected

in alzheimers disease the destruction from beta amyloid and tau
accumulation leads to the brain nerve cells damage and destruction
which leads to a drop in acetycholine
which leads to the short term memory loss you see in alzheimers disease
early on

the drugs like aricept (donepezil) that i have been on for almost
8 years and exelon (rivastigmine) increases the acetylcholine in the
nerve cell connections in the brain so that the nerves fire or work better
leading to an improvement in the alzheimers patients memory

eventually as alzheimers progresses there is so much destruction
in the brain that these meds lose their effects

the earlier in the disease you start these meds the better their effects
eg
i was started much earlier that most folks and its possible that the
aricept (donepezil) may be why i havent deteriorated yet

a couple of years ago a study was published that anticholinergics
which includes allergy antihistamines
increased your risk for developing dementia
this new study showed that these antihistamines many of us take
for allergies may not have that effect

however
those of us who take aricept (donepezil) or exelon (rivastigmine) are told
not to take these allergy meds since they may interfere with
the aricept or exelon by blocking their effects

they do this by interfering with the uptake of the acetylcholine
in those nerve connections
less acetylcholine less nerve firing
means less memory

so i dont take allergy antihistamines for that reason

for those not on aricept or exelon
you non dementia folks
the drugs that affect these acetycholine levels
eg are used for
bladder control or urinary incontinence eg oxybutynin ditropan
parkinsonism eg procyclidine kemadrin
depression eg amitryptylline elavil

long term use of these can lead to a 30% increase in dementia
other things
eg smoking can increase the risk well over 50%
not controlling diabetes and blood pressure and or cholesterol
and or weight and or lack of exercising  and or proper diet
increase the risk dramatically

in fact
a population as shown in european studies who stop smoking
and do all those healthy things may decrease the risk
of developing dementia by 40%

so
like with all meds
you have to way their side effects vs their benefits

the secret
take real good care of your health

i was recently contacted by someone who has short term
memory issues who is about to undergo memory testing
at a large alzheimers research center
i explained what testing was going to be done and
how it would probably feel to do the testing

after listening to their story
the best thing they can do for their memory is not meds
its
controlling their weight diabetes blood pressure cholesterol
improve their diet stop smoking control their cholesterol
fix sleep issues control their depression

uh 20 years ago would have been nice for them to have
done all that
but its never to late to start

the organicgreen doctor

alzheimers news-the answer to your question is

ALZHEIMERS NEWS-THE ANSWER TO YOUR QUESTION IS

well
its according to what the definition of is is

the most common question i get asked about alzheimers is
i get asked at least once a week is

should i get tested

this last week a former nurse stopped me
you know my mom died from alzheimers disease
im worried i will get it too

i knew what was coming out of her mouth next

should i get tested

first
ill answer this for this date 4/20/18
an important date each year

soon
though the question will be answered differently

so
on this day
should you get tested

if you are having memory issues you should go to your doctor
make an appointment only for memory issues
make a list of what you have noticed
dont let them ignore your complaints
dont bring up other health issues just the memory problems

you should be given a history and exam looking for causes
this history and exam may find the source of memory issues
like poor control of health things like blood pressure diabetes
sleep issues mental issues medications cholesterol etc

you should have a memory test
the clock test or the mini cog test are not good enough
i recommend trumps test he took the moca test
please dont take it online as if you are exposed to it too much
its not as accurate

if you flunk the moca test you should have a neuropsychological exam

you should have lab tests
cbc blood count   metabolic profile   thyroid level
maybe a vit b12 and vit d3 levels

then based on these results
you may need an mri
looking for brain shrinkage and or strokes and or masses etc

you may get your answer when all this is done

in private offices thats the workup thats done

now some doctors will do more
but insurance doesnt pay for them

genetic tests for apoe 4 status and early onset alzheimers genes
spinal fluid analysis for beta amyloid and tau proteins
amyvid pet scan for beta amyloid

if you have or are going to have alzheimers disease
those last two tests will be positive

most folks dont go this far
the noncovered tests cost close to $10,000

i have had them done
i know the answer to the question
do i have it
i do

now 8 years ago those spinal fluid tests and amyvid scan
were not usually done in the private doctors office
they were done mostly in research settings
like in the adni 2 study i did
its the study that actually led to my diagnosis

now its common for private doctors to do these tests
if the patient wants to pay for them

now
in the research world only
how and when you make the diagnosis of alzheimers disease
is about to change

in the research world
the diagnosis of alzheimers disease will not be based
on symptoms like memory loss
yes
thats right
i repeat
the diagnosis of alzheimers disease will not be based
on symptoms like memory loss

it will be done by diagnostic testing
genetic tests
spinal fluid analysis
amyvid pet scans for amyloid
tau protein pet scans for tau

thats how it will be diagnosed

think about this
its not based on memory issues

so
lets say when i was 55 years old
i would go to the doctor
should i be tested to see if i have it
yes
why
strong real strong family history of alzheimers disease

so
beside a history and exam
they would do the labs
then
draw blood for genetic tests
mine would be positive for apoe 4 apoe 4 gene the late onset gene
a spinal tap for amyloid and tau would be done
my levels would be starting to become abnormal
an amyvid pet scan would be done
it would be positive for amyloid plaques
a tau pet scan would be done
it would be positive most likely

now at 55 years old i had no memory issues
in fact at 58 years old i had memory screening for my long term care
similar to the moca test that was normal

my diagnosis at 55 years old
based on these 4 diagnostic tests
would be
alzheimers disease

now this is in the research world
what happens there eventually gets into the private medical world

its explained this is like coronary artery disease early on
its not based on symptoms like chest pain or heart attack
its based on diagnostic testing like cholesterol stress testing
heart ct scans
you can be told you have coronary artery disease before symptoms
start

so
it will be with alzheimers disease

ive had all my tests done
so
i know my diagnosis

what this means is
many of you reading this right now have alzheimers disease
that could be diagnosed before symptoms start

unlike coronary artery disease
which can be treated
alzheimers disease cant be treated yet
yet
but the thinking is
within 10 years there will be treatment
so then
you want to know as soon as you can that you have it
so you can start treatment

so
nurse i met
this is the reason i hesitated to answer that question

should i be tested


a new research study using these tests is available across the us
its the 3rd one of the adni studies
i did the adni 2
its called the
adni 3 study
you can click on the link for more information

you can also go to clinicaltrials.gov or to trial match at www.alz.org
to find more information on research studies

the lack of research volunteers is the biggest obstacle to doing
alzheimers research
to find a cure for this awful disease

do your part
i am

the organicgreen doctor

alzheimers news-can they fix it

ALZHEIMERS NEWS-CAN THEY FIX IT

new atlas.com

we all have an apoe gene
its either apoe 2
its the lucky one is what i call it
it tends to protect you against alzheimers

it could be apoe 3
you may get alzheimers but it may be a mild case
whatever a mild case of alzheimers means

or
it could be apoe 4
apoe 4 is known as the late onset alzheimers gene
if you get one apoe 4 you risk increases over 5 x youll get alzheimers
if you get two of them your risk increases over 15-20 x

we all have two apoe genes
the possibilities are

apoe 2 apoe 2
apoe 3 apoe 2
apoe 4 apoe 2

apoe 3 apoe 3
apoe 3 apoe 4

apoe 4 apoe4

the best one is apoe 2 apoe 2

the worst one is apoe 4 apoe 4
less than 5% of us have this one

around 25% of you have the single gene apoe 4
apoe 4 apoe 2 or apoe 4 apoe3

here is a link to a recent research study where researchers
in the lab in growing human brain cells
were able to alter the apoe 4 protein so that it became
an apoe 3 protein which would carry with it the decreased
risk of getting alzheimers disease if it could be done in
human brains

they used a chemical on these brain cells programmed to make apoe 4
apoe 4 has a deformed protein that causes the bad beta amyloid
to accumulate in the brain cells causing them to die
the apoe 3 protein does not

this chemical changed the apoe 4 protein into an apoe 3 protein
since they differ only at one tiny location
this new apoe 3 protein works more normal in the brain

now
researchers are working to develop a chemical that could be
given to patients to change the apoe 4 protein to apoe 3 protein
which decreases remarkably the risk of developing
alzheimers disease

all i can say is
im game
they can give this new stuff to me when it comes along
i got first dibs

the organicgreen doctor

alzheimers news-im sleepy

ALZHEIMERS NEWS-IM SLEEPY

i seem to say that to my wife she twice a day
once after lunch
the other
after supper

i do notice its worse in regards the after lunch sleepiness
a week after my infusions i get monthly in the
aducanumab study at ucla

whether or not its really that im not sure
i guess one day if i find out im getting the placebo
then ill know those infusions didnt do it
it maybe was
a placebo effect

sleep is important in regards to developing alzheimers disease
as you are sleeping there are garbage cells that are
programmed to go into the brain and clean up any debris
that has accumulated
this seems to happen during your deep sleep
this usually requires a good 7-8 hours of sleep for
all this to happen

part of this debris that accumulates is the bad beta amyloid
that is produced and builds up in the brain
its that bad beta amyloid that kills brain cells as it forms
plaques of amyloid
this is what is thought to be the cause of alzheimers disease
the accumulation of amyloid
the lack of adequate sleep exacerbates this
it may not be the only cause but it makes it worse

so a good restful adequate sleep is important

now researchers in a recent article found that this excessive
daytime sleepiness may indicate an individuals risk for
alzheimers disease
man am i in trouble

in this mayo clinic study following 70 year olds with excessive
daytime sleepiness for seven years with amyloid brain scans
they found 22% of them accumulated the amyloid
in places where alzheimers disease usually starts in the brain

so does the excessive sleepiness cause the accumulation
or
does the accumulation cause the excessive sleepiness
the chicken or the egg theory

so
get adequate sleep please
the early in life you start the better

i wonder what is going to happen in all those young folks
who dont get enough sleep due to cell phones computers
excessive lights working etc
just ask any high school or middle school teacher about this

they are doing a long term experiment on themselves that will give us
an answer in 40-50 years

im hoping it wont happen to them

the organicgreen doctor

alzheimers news-predicting your chances

ALZHEIMERS NEWS-PREDICTING YOUR CHANCES

now i know my chances of getting alzheimers disease
its as near 100% as one can get

what about you

my memory has been tested multiple times over the last 8 years
enough that when i do the tests
i know how well i am doing with my memory

over 1 year ago i had a several session evaluation of my memory
to get qualified for the biogen aducanumab study that i am in now

this last wednesday as i wrote in my wednesday blog i did my
1 year followup exam
then
in 6 months ill have it repeated as we end the first part of the
aducanumab study

so
when they started asking me my questions and having me
draw stuff and identify things i knew when i was finished
where i stood with my memory
i dont need no report from the study to know where im at
i know
i have not worsened in the last year
at best i may have improved
but
its not worsening that makes me feel better about things

but
what if you
those of you who have no symptoms
what if there was a way to know if you were going to
get mild cognitive impairment the stage right before
full blown alzheimers
some researchers thinks its the first stage of the disease
thats where i am at right now

but
what if you could be tested

here are the stages of alzheimers disease

prealzheimers   normal memory
mild cognitive impairment mci   mild memory loss
alzheimers disease  memory loss

researchers have found testing that is over 90% accurate
by testing small changes in multiple genes that when they
are all added up can predict whether someone years
before the disease shows up as memory loss
will develop mild cognitive impariment

its called polygenic risk assessment

its available in research now

lets just say that if thats the testing folks would have done in the future
those of you who are really worried
like i was in my 50s
i wanted to know
then
if this becomes available then you could find out
if you will get mild cognitive impairment ie early memory loss

then
what if a treatment for this was available
then
you could be treated years before the disease was
programmed to start
then
you might not get alzheimers

its amazing how it seems that little pieces of the puzzle are
being discovered every day
hopefully
the whole picture can be all fitted together one day
so we can prevent folks from getting this disease

in the meantime until all this becomes available
if you are worried you will get it
then
eat right
quit smoking
exercise
get adequate sleep
be active mentally and socially
control your health like diabetes obesity cholesterol blood pressure
relax
enjoy life
so
you will be ready when the treatment gets here

the organicgreen doctor

alzheimers news-get rid of this word

ALZHEIMERS NEWS-GET RID OF THIS WORD

i was determined to make it for this alzheimers panel this
weekend
last week i had what i think was the flu for several days
on friday as it was better
the gi stuff set it
i knew that this could happen with the flu
then
when i recovered from that
a tooth began to hurt
having had a lot of root canals i knew what that meant
another one in my future
so
i found left over meds from my oral surgery two years
ago and started them

by saturday morning i was all maxed out on those meds
i timed the pain pill so it would be almost wore off
by the time i started the conference

this saturday
the alzheimers greater los angeles had an all day conference
on early memory loss
they had an elder lawyer talk
they had a well known alzheimers researcher from usc talk
then
they had the panel that i was on
all folks with early alzheimers except for me
since my diagnosis is
early mild cognitive impairment probably due to alzheimers disease

i only stayed around for our panel
since i needed more pain meds afterwards

now i have been on a lot of alzheimers panels with
researchers neurologists caregivers social workers writers etc
i was usually the only patient on the panels
but
i dont ever remember
theres that word
remember
having seen a panel of just patients
telling their stories of
how they were diagnosed
how it affects them and their families

i will say there was a lot of crying going on
on the panel and in the audience

near the end of the hour and half
we were all asked by the moderator
what would you like to tell those of us here in the audience
what would you like to tell others

this one man with early onset alzheimers disease
said
please get this word out of your vocabulary
remember

dont ask me if i remember
i dont he said
please dont ask

all of those on the panel agreed
no more remember questions

let that sink in
if you have a loved one affected
dont ask


also
when asked
what good is there in getting diagnosed
we all said there was some good

i said i was able to prepare for the future
i said now i know where i stand
i said i can handle that

others said he is much closer to his wife now
others said he is taking better of his heatlh
others said he is exercising more taking long walks
others said he is enjoying life more right now
i said i understand that
others said he renewed his hobby of writing and raising orchids
others said he married his long time partner
others said he continues to exercise and not let this slow him down

i said to my wife she as i left
thats the best most memorable panel that i ever
remember

the organicgreen doctor

alzheimers news-doc im having memory issues

ALZHEIMERS NEWS-DOC IM HAVING MEMORY ISSUES

yesterday i was contacted by someone who felt like he was having
memory issues
he is a retired professional who works one day a week
he has noticed that he has problems doing some of the work that
he used to do that involves memory and numbers

this has happened to me a lot over the last 7+years since i was
diagnosed
folks wanting to know what to do

for those of us like him with it in our immediate family
we are always concerned
is it going to happen to us

i was
it did

heres my advice

if you think you have issues
you should have an evaluation done
i read this morning in an article that when folks have memory issues
and
dont recognize them
thats more concerning

losing you keys is not abnormal
not knowing what car keys are for is abnormal
but
as we are finding out
there is a gradation between losing your keys and not knowing
what they are for
where you are on that grade is what you want to know

the first thing i tell folks
make an appointment with your primary care doctor for
only one thing
memory issues
nothing else

dont go alone
take your spouse or significant other
many doctors will want to interview them

if you dont think your primary doctor will listen to you
or do a good job
go to a neurologist

eg i if i was in practice now i think i could do a good initial workup
for memory loss

they are looking for causes that you can treat or do something about

go in prepared

if this individual has alzheimers starting he is real early
some of the memory testing will be normal
like the test called the mini cog
the one a lot of doc use
or
the mmse
trumps test the moca test is more sensitive to early changes

please dont go online and read and take the moca test
it affects its accuracy when you do have to take it for a diagnosis

if you dont do well on the moca test you should have a
full neuropsychological exam

if you are further along some of the previsit paperwork becomes
more important

to be complete
i would have his wife fill out this 21 question alzheimers questionnaire by herself
without his help
here is the link
sometimes spouses notice more things than you do
take that with you even if its normal
it helps the doctor out

then go online and take the sage test
here is the link
fill it out copy and take with you
this also helps the doctor out

if you are early in the disease these will be normal also
i expect his will be
mine were
now my moca test was initially abnormal
his moca test may not be normal

make a list of all your medications and all the supplements
that you take

i now take a lot of supplements
i have cross referenced all of them against each other and
against all my prescription medications

webmd.com has a good one to use to cross reference supplements
some supplements and over the counter meds i cant take
because of these interactions
eg
i have to limit antihistamines use since they interfere with
my aricept (donepezil) that i take for my diagnosis

make a list of your health issues like high blood pressure
high cholesterol diabetes sleep issues anxiety depression etc

make your appointment only for memory loss
bring your online tests
bring your wife
bring you list of concerns of what you have noticed
yes write them down
hand your doctor a copy
it is entered into your medical records
it shouldnt now get ignored
you keep copies of the online tests and the other lists
for yourself

the doctor should take a good history and do an examination
thinking in terms of finding a treatable cause for his memory loss

these are the labs that he should have
a cbc
a metabolic profile like a chem 24 that is commonly done
a tsh for your thyroid levels
a vitamin b12 level

some like me would add
a vitamin d3 level
a homocysteine level which if elevated may be associated with
an increased risk of heart attack stroke and alzheimers disease

then some would had sex hormones like testosterone for males
estrogen progesterone for females

if the b12 or the vitamin d3 or the homocysteine level are abnormal
they are usually easily corrected with daily over the counter supplements
all thrre of these were abnormal on me

then after the history and exam and the lab testing is done
there should be a memory test done
a minicog is not a sufficient one for early disease
a better one is the moca test like trump took
it shows up early symptoms

if the moca test is abnormal he should if his labs and history and exam
are unremarkable have a
full neuropsychological exam
it will show if there is memory loss
these are usually done by a neuropsychologist

if the history and exam or lab shows things like sleep issues or depression
not well controlled or abnormal labs these need to be fixed
before more testing is done

if the neuropsycholigical test is not normal
a mri scan should be done
that will rule out things like old strokes tumors etc

at this point the cause of the memory issues should have been
discovered

for him
he might consider after this
if he wants to know more
to do genetic testing
spinal tap for beta amyloid and tau
an amyvid pet scan for beta amyloid
none of these are covered by insurance
and are expensive

for me
i wanted as much information as i could obtain

so i have
such that i feel like my diagnosis is as accurate as one
can have based on the testing thats available in 2018

also
as i told him
he is a good candidate for research

you can go to clinicaltrials.gov
type in alzheimers
click on the state you live in
a list of all the alzheimers studies available are there

i can tell you though sometimes they dont show up before
they are open
the alzheimers centers in your state will know whats coming
in the future that may not be listed

for him
since he could be early or even in that prealzheimers state
that state where the memory is normal but the scans are not
he would be a good candidate for
some of the new treatments that are being used on folks with
prealzheimers or those with mild cognitive impairment like me

also a new study that is the phase 3 of the adni2 i was in for 5 years
called the adni3 study is starting up in his state. it should be on the
clinical trials website

also you can sign up for the alzheimers associations trial match
on their webpage www.alz.org
they will let you know when a study comes available that you might
match up with

also
if he goes to his doctor and gets the run around
he should go see another doctor
he should make sure he has a complete work up

a history and exam
labs
memory testing
maybe mri
maybe further tests for alzheimers not covered by insurance

he also
after he has had a complete workup
not before
should consider the regimen in dr bredesens article on reversal of cognitive decline
this should never be done without discussing it with your doctor
i reviewed them with my doctor and my neurologist before i started them

does it help
i think it might
but
its hard to prove if this is why im not worse now
or
if its the aricept (donepezil)
or
if its just the course of the disease
waxing and waning for now

tomorrow i will be on an alzheimers panel at a conference
at the huntingtom memorial hospital in pasedena california
sponsored by the alzheimers greater la at www.alzgla.org
answering questions about my story and diagnosis
and
how i feel about being diagnosed
and
how it affects my family and my life
and
what recommendations
i have for other folks

the panel im on at 1030am will be all folks who have
an early diagnosis

its interesting when you are around folks who are early on in the disease
that for many you would have no idea they had memory problems

here is the link to the conference

so
if you have memory issues
get a good workup
some causes can be treated

the organicgreen doctor

alzheimers news-i think he had it

ALZHEIMERS NEWS-I THINK HE HAD IT

i know an author who wrote several books about him
says he didnt have alzheimers disease when he was president

reaganlibrary

well
i think
ronald reagan was in the early stages of the disease when
he was president
he had to have been

i read that his doctors back then in the 80s said he showed
no evidence of alzheimers
did he have memory tests like trump had earlier this year
the one i have had several times over the last 8 years
the moca test
no reagan didnt have that since it was developed in 1997
the other one used commonly is the mmse
it was developed in 1975
it could have been given to reagan but i doubt that it was

if you are early in the disease the mmse misses the diagnosis
the moca test usually doesnt

so my guess he was never ever really tested while in office
even by his private doctors

i was a primary care doctor having graduated in 1982
and finishing my residency in 1985
starting private practice in 1985
i will admit i never recall actually diagnosing alzheimers
disease in my career
it was something like cancer you didnt talk about with
patients
it sort of got ignored

my guess is that his symptoms were ignored
and not tested for

ive watched reagan on tv clips since i was diagnosed
and now knowing a lot more about the disease

you can hear it in his speech
you can see it in his face
the stare
if you have had a loved one with this disease
you recognize that stare
you know what im talking about

there are three stages in alzheimers
prealzheimers with normal memory tests and abnormal spinal fluid and a positive amyvid scan
mild cognitive impairment with slightly abnormal memory tests and abnormal spinal fluid and a positive anyvid scan
alzheimers with abnormal memory tests and abnormal spinal fluid and a positive amyvid scan

if trump will develop alzheimers as he ages he would be prealzheimers now
he would be in the white area
i have mild cognitive impairment
i am in the pink area
reagan at the end of his second term probably had early alzheimers disease
he would have been in the grey area




this is the alzheimers graph
the graph of the typical late onset alzheimers patient
it shows the development of symptoms and testing that we
now have available

this graph was developed from data from the large research
study that i was in called the adni 2 study

he died at 93
he quit the presidency at 77
plot those points on the graph
he was first president at 70 years old
plot that point on the graph

if this was his path which it probably comes close to
at 70 he probably had early mci or mild cognitive impairment
if you had done the moca test on him it might have been abnormal
not like the good score trump had

he probably noticed things himself
maybe his wife
probably not others unless they knew him real well
if he had had a full neuropsychological test it would
have been there
its the gold standard memory test
his spinal tap analysis for the bad amyloid and the tau
would have been abnormal
his amyvid pet scan the one for the bad beta anyloid
the hallmark of alzheimers disease would have been
positive
maybe early changes would even been seen on a mri scan

so i think when he was first inaugurated as president
these would have been positive

i have been exposed in the last eight years to a lot
of folks who have mci and real early alzheimers
they function quite well
they work they write they give lectures they drive
they travel they do all their financial stuff
most folks dont even know

when he was first inaugurated
my guess he would have qualified to be
in the aducanumab study that i am in now

wouldnt that have been interesting
if a sitting president was undergoing a novel treatment
for alzheimers disease

it probably would have been the best thing that
could have happened to the alzheimers movement

but none of this was available

my guess is he functioned quite well in his first term
my guess is that he started to have issues in the end
of his last term
issues he noted
his wife nancy noted
his close white house staff really noticed
and
they were able to protect him
he did a good job at the end
but
had his disease been a faster progresser
it might not have been a good ending on that second term

so
i believe
knowing all i know now
that he could have been diagnosed while in office
alzheimers just doesnt pop up one day
its a usually slow gradual process that can take
like in him
30 years to fully develop and cause death

lets dont be ashamed if he did have it while in office

the organicgreen doctor

alzheimers news-its in the blood

ALZHEIMERS NEWS-ITS IN THE BLOOD

the other day while at the ucla infusion center
as i was getting my iv started
i saw the red blood ooze out the long tubing
thats connected to the iv

i said
did you hit an artery there
i was joking
she the nurse looked up at me
for a second
i think she thought
did i
no you didnt
i was joking

but
as i looked at that blood oozing down that line
i was thinking
the answer to all this alzheimers thing
is in that blood flowing down that line

in that blood a genetic test was done
positive for the apoe 4/apoe 4 gene
the one that increases your odds for getting
late onset alzheimers disease

knowing you have it is nice i guess
but
it would have been better to have known it when
i was in my 30s and 40s
i probably would have gotten even more aggressive
with my health
eating right
controlling my blood pressure and cholesterol
controlling my weight
sleeping better
all those things that make a person live longer
it the genetic test
sort of gives you an incentive to try harder
to be healthy
like
when you get a report back that your cholersterol is way too high
which
increases your risk one day to have a stroke or heart attack

ok
so that one happened to me when i was forty

then
as i looked at that blood as it flowed out the end of the tube
soaking into the sheet
i thought
that stuff im taking
in a lot of folks
that aducanumab antibody
its in their blood naturally
lucky them

then when she finally got it all hooked up
and cleaned my arm all up
into the vein went that stuff
either salt water or the aducanumab
im sure i dont have any naturally of that aducanumab

later when i got home
i saw this article about infusing young blood into folks
that it might slow down the alzheimers disease

i knew it
i thought
when i was looking at my blood flow out the end of that
iv line
i know its in the blood

we just need to figure out what that it is
and
give that it to all of us

when blood from young donors were given to patients
with mild to moderate alzheimers disease
functional improvements were noted
like
paying bills and taking medicines and cooking for yourself

that fountain of youth stuff in blood may help folks
have better memory

now i understand what those vampires are all after

the organicgreen doctor

alzheimers news-trumps memory test

ALZHEIMERS NEWS-TRUMPS MEMORY TEST

ill be the first to admit
i dont like donald trump
but
lets be fair to him regards his memory test

alzheimers starts in the brain 15-30 years before
any symptoms start
before any memory tests are abnormal

there are subtle things that can happen before the
memory tests become abnormal

sometimes the first thing is spatial things
missing things in your peripheral vision
which can show up when driving
sometimes subtle memory things happen
im speaking from personal experience here
things you notice that others do not

eventually when the time comes
the memory tests become abnormal

first let me say
if you are going to need memory testing anytime
soon
dont be reading whats in those memory tests
it affects how accurate they are

now i have personally been administered the same memory
test he had done more than 15 times over the last 8 years
i have personally administered that particular test to
family members and friends several times
i am quite familiar with the moca memory test

when you go to a doctors office
he might administer one of three tests

one is the minicog test
it involves being told three words to remember
then
you are given a time and asked to draw that time
on a clock

if you dont pass that one
you have memory issues
you need more evaluation

its a quick and simple test
its not sensitive though in picking folks up early
with memory loss

the next is the mmse
multimental state exam
its scored up to 30
get 30 and you might be ok
but
for those like me when i was first tested
it missed me
i got a normal score on the mmse

the third test is the moca
thats the one that trump took
the best score you can get is 30
a normal score is 27-30

when i was first tested in 2010
my score was 25
which was abnormal
its in the mild cognitive impairment range

the moca test is a more sensitive test to pick
up those early changes
like what you see with early alzheimers or mild cognitive impairment

its not a 10 minute test
its a 20-30 minute test

so with a normal result
a 30 score
as of right now
trump probably doesnt have any symptoms of dementia
or short term memory loss
the first thing that usually shows up in alzheimers disease

my scores earlier this year on one of the moca test
was 30
a perfect score

so why did mine get better
medication ie aricept (donepezil)
supplements
correcting things like cholesterol blood pressure weight exercise
stress sleep staying mentally engaged
all helped to make my scores improved

so i have a perfect score on my last moca test
does that mean i dont have alzheimers disease
no
the diagnosis is made on more than just the moca test

they use
family history
past medical history
risk factors
spinal fluid for tau and amyloid
a pet scan for amyloid the amyvid pet scan
genetic tests
serial memory tests
then
the gold standard
the neuropsychological exam
eg mine is abnormal even though my last moca was normal

the neuropsychological exam is more accurate
if there are memory issues it will show up
yes you can have a normal moca and have
an abnormal neuropsychological exam
it take 2-3 hours to do this exam

the moca test is a screening test
it doesnt rule out alzheimers disease

there is a state
called
prealzheimers or prodromal alzheimers disease
the memory tests are all normal
the scans and spinal fluid levels are abnormal
in this stage
you just dont have symptoms yet

so
trump
either does not have alzheimers disease at all
or
he is in that prealzheimers state or prodromal state
a time that can last 10-20 years

so
as a medical doctor
as a family doctor
as someone who has had this test multiple times
as someone who has administered this test multiple times
as someone who reads 10+ articles on alzheimers disease each day
as someone who has lectured on alzheimers disease multiple times
as someone who has been and is now in two of the most
important alzheimers studies ever done
i feel like
i can speak with some authority about alzheimers disease

so
if i was trumps medical doctor
if i had administered the moca test to him
i would tell him
right now there is no evidence that you have memory loss or dementia

i would tell him to correct those other health issues
like
the what i called heart attack levels of the ldl cholesterol
he is just a point or so away from being labeled morbid obese
get more sleep
get more physical activity
greatly improve his diet
let your calcium score on that heart ct be a warning
if a heart attack or a stroke dont get you
demential or alzheimers might in the future


the posting of the moca test for all to read
i think does a disservice to those who may need a moca test
in their workup for memory loss
practicing or reading the tests affects its accuracy
i am not allowed in my studies to have other memory testing
since it causes what they call testing effect

also
this doesnt mean trump doesnt have mental problems
or psychological issues
this moca test this screening test
doesnt check
for anxiety
for depression
for bipolar disorder
for psychosis
for paranoia
for narcissism

those are tested usually by a psychologist or psychiatrist

so
no he dont appear to have active dementia or alzheimers
manifesting itself right now

lets all move on from this

mudslide update
maybe next week the 101 will be open
no new recoveries no change in the death toll
we saw what seemed to be miles of trucks loaded with mud
and stuff on the freeway waiting to go to a dump place
way north of santa barbara
they are expecting to dump over 20,000 dump truck loads of
stuff in those dump sites

thatcher update
he is awake
playful
tape free
looks like iv free except for the pic line
oxygen free
soon to be moved from icu
you go thatcher

here is his gofundme account
#thatcher strong

the organicgreen doctor

alzheimers news-billy

ALZHEIMERS NEWS-BILLY

thats not really his name
his name is more of what you would find in ireland
which he must be from based on his accent

we met billy not long after we moved in here
he would stand on his front patio
easily viewed across the courtyard from our condo
with his sporty hat on
dressed neatly
standing usually in the sun
he usually liked to talk to the women as they walked by
not in a harassing way though

later after watching for awhile
and
hearing what he was saying
i realized that some of it was gimmerish

i told my wife she after my observations
he has alzheimers disease you know

he lives with his wife
my guess they are in their 70s or early 80s
my impression is that he probably was like
a college professor or something like that
now
i dont know that for a fact
its just the thing that popped up into my brain
when i looked at him across the way
yep
a college professor
like my historian brother and writer brotherinlaw

so i at first sort of ignored him
when i walked by
it was gibberish he was saying
i just said hi and kept on going

then
one day i noticed he was out on the porch
with his hat on
his handy cane in hand
he looked to the left
he looked to the right
then
off he went
over toward us
then
he turned towards the street we live on
a busy one especially during traffic times
he then
turned left towards the bus stop and uptown
he went
maybe i thought he use to be a runner or track star
so
i waited
no wife came out
no caretaker came out

i
having read about and seen first hand
bad things happening to alzheimers patient who wander off
eg once my younger brother wandered off into the woods
near his home before he was eventually found
he was going hunting he said
something he loved to do

so
out the door i went
i turned left
there was billy way down the street
with cars zooming back and forth
he was trying hard to get into this locked car
looking around
then trying another door
so
i walked up to him
billy i said come lets go this way
he muttered some gibberish
he sort of sounded like my younger brother when he got worse
ok i said
its over this way
he looked at me
smiled that cockney smile
ok
off we went
back up the sidewalk
turned right towards our condo
the left towards his condo
there was his wife
all worried looking for billy

here he is i said
hes safe now

i thought
next time
he might not be though

it takes a village to help these caregiver folks out
24/7 duty is what they do

ive noticed folks sort of keep an eye out for him
hes always wandering next door to the condo next to him
then
a few minutes later i see the owner walking him back
to his place

there needs to be some type of system
that you can implant in someone like billy
that will send out warnings if he goes beyond some gps border
and
has a gps tracking system so one could look at a smartphone
to find their location
maybe one that could be implanted permanently
i will volunteer to be the first one to use it

i so worry about folks like billy
there is always a chance that things wont end well
a tragedy for him and his family

yep
i want to go first


mudslide update
here is a link to a lot of mudslide images
click here

16 killed including 4 kids
42 missing
a lot of well known actors musicians sports folks had to
run for their lives
their homes are destroyed
over a hundred total
hundreds more are damaged
our relative still cant get in to see their new home
in fact
everyone in the mudslide evacuation zone are being told to leave
and
expect to be gone for a couple of weeks or more
they are bringing in so much clean up equipment that folks
wandering around are getting in the way
theres no water no electricity no gas

the 101 hwy may be opened on mlk day
maybe
the beaches are all closed indefinitely
along the beaches are rolled up balls of metal that are
unrecognizable cars
the largest was this big ole hummer reduced to a ball of metal
there are boulders the size of bulldozers

amtrack finally opened
boats are taking folks from the santa barbara harbor the
30+ miles away to the ventura harbor
otherwise its a 4-5 hour track through mountainous roads to ventura
our trip to ucla will probably take 7-8 hours next week
i have to have my mri scan before i can get my next infusion
of the alzheimers experimental drug aducanumab
so if the 101 doesnt open by then
well
we are going to take us a little day trip
up and over the mountains down the valleys
down the 5 freeway then into los angeles
a sort of sight seeing tour for a day

thatcher update
hes starting to wake up
hes off the nitrous oxide and is having to take some morphine
for pain
during one waking up period his mom bent over and kissed him
his heart rate went up
his skin got all flushed
hes a mommas boy i guess
thanks for everyones continued support

here is his gofundme account
#thatcher strong

the organicgreen doctor

alzheimers news-alzheimers resolutions

ALZHEIMERS NEWS-ALZHEIMERS RESOLUTIONS

many of us do the new years resolutions thing
i did it this year
but
didnt write them down
i just did them in my head
you know
the usual stuff we all write
many of the things we never do

however
there are resolutions that i do every year
they are almost absolute ones
they are
my alzheimers resolutions

my number one ranked one
the one that may possibly have the most impact
is
continuing in the aducanumab study at ucla
it ends in september 2018 for me
theyll look at the studys results
if they look promising
all 1000+ of us in the usa will be given the chance
to continue for another 2+ years on the real stuff
the real drug aducanumab

if it works as advertised
it will slow down the disease
how much we dont know
i do feel like i am getting the real drug
so
i plan on making sure getting this drug has priority
in my life
my wife she agrees

then there are the others

i will continue to talk to anyone who asks me about alzheimers disease
in fact i will tell you more than you want to know

i will eat a healthy diet like the mind diet
i will drink 1-2 glasses of red wine at night
i will drink 3 cups of coffee in the morning
i hope to improve sleep i addressed this this week now that weed is legal here
at least for now unless jeff gets a wild hair
i will stay active physically mentally and socially
i could improve on the physical thing some since i am not
working every day on our property in texas
i will plan to increase the activity

i am happy
i am not sad
i try to have my moments of zen each day
sitting here in the condo or standing in the garden or on the beach  etc
i will continue to stay on my 36 point regimen of healthy things
and supplements from dr bredesens reversal of cognitive decline article
i will update and solidify my will my power of attorneys my healthcare
 directive my legal records etc

so
if i can do all those things
i think i am doing the best i can with my resolutions
to slow this stuff down

yes
i make resolutions every year
but
mine may be a little different than yours

the organicgreen doctor

weed eater

WEED EATER

since it was illegal
i didnt ever consume it during the 60s and 70s
well maybe once i did

i made a decision
since it was illegal
i didnt want to get caught with it
and
have it on my record

my ultimate goal in life
was to be a physician
i didnt want anything to prevent that from happening

so
i said no
to the weed

that was
until 7 years ago
when i got first diagnosed

i would sometimes have a several days run of
sleepless nights
mostly because of my taking the alzheimers drug
aricept (donepezil)
which interferes with my sleep
i wake up too early sometimes
like 3-4 hours too early
like
wide awake too early

if i do this several days in a row
it all interferes with my day to day living

so early on
someone sent me edible weed
to help with the sleep
i tried it
it only made me restless like if i had too much coffee
before bedtime

then
a few years later
i tried a vaped weed
it burned like fire when i inhaled it
it didnt work well at all

now
i know there are hundreds of different weeds
some high in thc
some low in thc
but high in cbd

the thc makes you feel good
the cbd is what shows a lot of promise in neurological diseases
many antiweed states have the cbd weed legalized
its the stuff that seems to help folks who have uncontrollable
seizures
especially kids

so there is a component of weed
that shows promise in treating neurological disases
like
seizures
yes like alzheimers disease

two acquaintances have recently used weed
to control the nausea and appetite suppression
from chemotherapy
it also helped with the anxiety

the research is hard to do
since its rated by the us government
right there beside heroin

now
here in california
it is now legal to grow it
although commercially there are a lot of rules attached
to growing it
its legal to possess a small amount
you can even grow some yourself

now here where we live
they are trying to be slow about getting the permits done
so it will be eventually sold in stores throughout the county

weed is not going away
the governments are about to make a ton of money off its sales
local governments are about to have a financial profitable
industry move in

so
ive decided
im ready to particpate
i look at this stuff like a drug
for me its to assist in sleeping at night
maybe helping slowing down the alzheimers disease some
to
make my life better each day

i dont plan on getting high or use it during the day
just an edible at night
so i can
feel rested the next day

it has to be safer than ambien or halcion or those other sleeping pills

i wont use a smokable
that cant be good for the lungs
just an edible for me

its time
we look at this drug
for its positive benefits
to those of us
with neurological diseases
incurable ones most of them

we
folks
have nothing to lose

the organicgreen doctor