alzheimers news-maybe a little here and a little there will help

ALZHEIMERS NEWS-MAYBE A LITTLE HERE AND A LITTLE
THERE MAY HELP

the clocks aticking
i realized this this week
when an alzheimers wife called me about her husband
listening to his story i realized that he is past the halfway point
on that downward slide that doesnt end well
it that slide will intensify over the next several months
then he will fall off

he was diagnosed the same year i was
he was a working professional forgetting things
he has now reached the edge and will soon start that fall

when he and i were diagnosed
i really expected to be where he was today

instead
here i am giving advice to an alzheimers wife who
when you look at her you see the fatigue dripping from her face
that tired tired walk she has
he is taking her down with him it seems
not on purpose though
its part of the disease
this caregiving thing

she was asking me about getting him into research studies
i thought to myself
its too late way too late to do anything else for him
but love him and care for him
and
get yourself some relief and help

i didnt encourage her to seek research help
it would be fruitless

this last week merck the drug company is publishing results
of its study on its new bace inhibitor
that blocks the production of the bad beta amyloid that gets
deposited in the brain in alzheimers

in the study it worked but the folks didnt get better
maybe because the folks were like the above guy
too far along in the disease

now
the long term studies that are being done are done on folks
who are early in the disease or have no symptoms at all
ie they have positive scans for alzheimers
but who have no symptoms

those are the ones that may be helped by these bace inhibitors
they dont remove the stuff the amyloid and plaques like
the infusions that i am on

my infusions remove the amyloid and the plaques and stimulate the
garbage cells to clean up things
the bace inhibitors only stop the amyloid production
doing that after the fact doesnt undo whats been done

so for me and others my age
the drugs like the aducanumab is our last hope
if they dont work or the bace inhibitors dont work
the next wave of drugs for this awful disease is meant
for those in the generation behind us

if this stuff fails all we have to work with is maybes
like

eating a mediterranean or mind diet that may delay things if done
long term by a few years

looking at the 36 point plan outlined in dr bredesens reversal of
cognitive decline article
highlight the above and google it

i am doing all those things he recommends if i can tolerate them
no
they arent proven to help scientifically
they many of them are maybes

well doing all the healthy things on the list are almost sure to help
the supplements are maybes

but
my and our choices are what

there is not one if the aducanumab like drugs dont work

we are left with the maybes
we as a generation missed the ride to the cure

now i do feel like that something im doing has slowed things
down a lot
im not sure what it is
but
i plan on continuing what im doing
and
adding any maybes that may appear in research that
wont cause me harm or interfere with my medications

my most recent maybe is
cbd oil
ive found the research that says maybe
maybe

i know what dose to take
i plan to take it
just
when i come to visit texas or arkansas this summer
i have to leave it at home since i could get busted with it
in my possession

how does it work
it seems to help remove the bad beta amyloid in the brain
well why dont they just do the research to know if it does
for sure
the federal government makes it almost impossible to do the
research
so
i cant wait on this maybe
at least
i live in a state that allows me to purchase it legally here
and
not feel like a criminal

i can see it now
retired austin doctor arrested at the airport with illegal substance

so
im getting ready
if my aducanumab fails
starting now
to take my maybes
that maybe helps
maybe

ive told several well all of the doctors that i see what im doing
they give me that look
i know it cause i use to do the same thing to patients
but
i really have no other choice
other than do nothing

i know thats not going to help any

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-what to do

ALZHEIMERS NEWS-WHAT TO DO

last week i spoke for about 40 minutes on clinical studies
in alzheimers disease
i reviewed the theory that beta amyloid accumulates forming plaques
then tau protein unravels and forms tangles
both cause brain cell death

i reviewed the adni 2 study i was in for 5 years
a series of diagnostic tests
four that are usually done to work up memory loss
history and exam  labs  memory testing   mri of the brain
the others arent covered by insurance
genetic tests  
spinal tap for amyloid and tau
glucose metabolism pet scan
amyvid pet scan for beta amyloid
then
i reviewed new drug treatments for alzheimers that are experimental
the alzheimers vaccines like my aducanumab study that i am in
the bace inhibitor pills that stop beta amyloid production
the leukemia drug that slows down parkinsons and may slow
down alzheimers

then i reviewed the healthy things that one can do to slow it down

then i answered questions for 30 minutes running over into the break time
but
folks kept asking questions
afterwards i answered question for even longer
folks want answers
sometimes there arent any yet

should i get tested
yes if you have memory issues

should i get genetic tests
no if you dont understand what they mean
especially the apoe 4 gene thats in the 23 and me tests for genetic diseases
its associated with late onset alzheimers disease
if you get the gene it doesnt mean you will get the disease
you are at a higher risk of getting alzheimers though
how you live your life health wise and environmental factors determine
whether it gets you

so what do i do if its in my family
for now there is no real treatment
but we are close i said

i would do these things
do all the healthy things on this slide
do the  mind diet or the mediterranean diet
consider if you are high risk or if you have memory issues
the reversal of cognitive decline protocol from ucla
its the one i am on

most of it is on that slide above
the rest are supplements
and
checking levels of things like b12
thyroid levels hormone levels vitamin d3 homocsyteine etc
correcting them if they are abnormal

the results from their studies are promising to slow down the
mental decline
but
i doubt that it totally stops the disease
it just slows it down
but
what if you could slow it down for 5 years
thats a lot of time in alzheimers years
enough
to see a love one graduate or get married or have a baby

i attribute my doing well to this regimen
and
to taking aricept (donepezil)

dont just do nothing
most of what you can do is in
your hands
and
your mouth
and
your legs

get going
now

thats what you do to slow this down

the organicgreen doctor

alzheimers news-the final answer is....

ALZHEIMERS NEWS-THE FINAL ANSWER IS....

for those who dont know
my story
here is a brief summary

my mother and younger brother died from the disease
my father may have had it when he died
my older brother probably has early alzheimers disease

8 years ago i had a normal memory test when i was seeking my
long term insurance
6 years ago while seeking to be in the normal group for a large
research study called adni i was found to have short term memory loss
on memory testing

this is when i quit working and started the alzheimers drug
aricept or donepezil which slows down the symptoms
but doesnt stop the disease process
if started early it has better and longer effects in slowing these
symptoms

testing done that was positive were

i carry the apoe4 apoe4 gene that puts me at high risk
maybe 10-20 x increased risk of developing alzheimers disease

testing on my spinal fluid reveals i have low beta amyloid
and high tau levels
this was done 6 years ago
this is associated with alzheimers disease

my mri scans and glucose metabolism pet scans are all normal
early in the disease these can be negative but later
they become positive

i have low b12 levels low vitamin d3 levels
high homocysteine levels
homocysteine if elevated is associated with an increased risk
for heart disease stroke and alzheimers disease
maybe

these levels are corrected by taking replacement supplements
under the care of my primary care doctor
my levels are now all normal

i aggressively take care of my health
i follow dr bredesens protocol from his study
reversal of cognitive decline
again under the care of my physicians

so i have been stable now for 6 years
probably no one notices i have a problem
maybe not even my wife she
but i do

i know that i have alzheimers
deep inside my body tells me
that i do

so all of the things i am doing now
i realize they dont stop the disease
it just keeps marching on from one brain cell to the next
they only slow things down some
i know
that in the end this disease wins

unless
i can find something to stop this disease from marching on
so
for the last 6 years i have been keeping a close eye
on all the research thats going on
looking for the drug that might treat the disease
or at least
slow it down significantly

oh theres real promising stuff out there
but
it may be a decade or more away
too late for me

beta amyloid is a protein that accumulates in the brain of
a person with alzheimers disease
many feel like its the cause of the disease
remove it or prevent it from accumulating may
prevent or slow down the disease

so three years ago i spotted the aducanumab study
here is a good review of it from ucsf memory center

so for me
it seemed to be the one i was looking far
it seemed to work in a preliminary study called phase 1
folks with my diagnosis had all the bad beta amyloid
which is thought to be the cause of alzheimers
removed from their brains
ie
their amyvid pet scans for the beta amyloid which showed
beta amyloid throughout the brain
after a year of treatment it was all cleared out
then
these folks memory also improved
thats the true measure
does it make things better

so if this stuff works
it should stop the disease in its tracks
or
at least remarkably slow it now
so
that
a person with it may die from something else
like maybe old age

so
this was where i was at about a year ago
when i heard this study was coming
i knew i wanted to be in this one

i started the five step process last november
requiring multiple visits to work through the steps
some involving my wife she
i passed all the tests
meaning some of them were abnormal
then
last week i went up the fifth step
the amyvid pet scan for beta amyloid in the brain

if its positive
i have alzheimers disease for sure
im in the study

if its negative
i am not in the study
i just got a big time reprieve

are you nervous
anxious
scared
sad
waiting like this

no i said
this has been going on too long
i also have been open and written and freely talked about
all this
i think it has helped
plus
it has helped to get educational stuff out to folks
many who have now volunteered for research studies

now i did cry when i heard i was accepted just to be considered
to be in the study

so
yesterday
as i pulled up my email
there it was from the
alzheimers disease center at ut southwestern

i am sorry to say dr nash
but
your amyvid pet scan shows that you have amyloid deposits
throughout your brain
i knew this was going to be that way
so it means i have alzheimers disease
especially when you add up my history and other testing

thats the bad news
but
the good news is that qualifies you to be in the
aducanumab study

as soon as we get all the official confirmations
we will set you up for the infusions of
aducanumab monthly for 18 months then another 3.5 years if it seems
to work
i realize i also may get the placebo for those 18 months
my chances are 33% i will get the placebo
but
after that i will be able to get the real stuff
either way i am fine with
because eventually i will get the real drug

so in this slide above
on the right is what my scan looks like
all the red stuff is amyloid
then
if i get treatment
in a year my scan will look like that on the left

so am i sad
yes and no
its sort of sad to get this final answer
like being told you got a noncurable cancer
remember alzheimers is usually the true cause of death for those who get it

did i cry
yes i cried yesterday
like when my mom died and my brother died

am i happy
yes i am happy but sad at the same time
i know that i might be able to do something now to slow this down
be involved
with something that may change a lot of folks lives

as of right now
i feel some hope
i am ready to face this new stage in my our lives

i feel like i just won a million dollars
or maybe the lottery

the sad but happy
the organicgreen doctor

alzheimers news-gut feeling

ALZHEIMERS NEWS-GUT FEELING

when a person is born
they began to have bacteria introduced into their guts
the first being of course from their mother
over time
the composition changes of ones gut bacteria
things like
antibiotics wipes out a lot of them
diet like a fatty meaty diet alters its some
illnesses like stomach viruses and bacterial infetions
changes things up even more

so
what you are left with
is what bacteria survives all these attacks

i follow a 36 point plan from this reversal of cognitive decline article
from dr bredesen from ucla since it may have promise
in slowing down memory decline
in fact they are doing a much larger study at the cleveland clinic
on this regimen
no its nothing fancy
most of it is what we all should be doing anyway

one part of the plan is the diet we are on
how it affects our gut biology
if you get the wrong makeup in the gut you get inflammation
going on that seems to be transferred to the brain
inflammation is part of the alzheimers disease as it moves
through the brain

one of the things he recommends along with a diet
similar to the mind diet
is to take probiotics on a regular basis

so
thats what i have been doing now
besides changing my diet to the mind diet
i added probiotics to my regimen
which one i am always asked
im not sure since you can get lost in all those selections
i just right now
buy one and take it
figured its better than not taking one at all

i also have hardly ever take antibiotics unless i had
true pneumonia or some definitely identified infection

so now
after this study below
it makes it more likely that all the above is important
i bet in the future there will be a particular probiotic formulation
that is used to help to slow down the progression of alzheimers disease

so
in a recent study in mice
mice with no gut bacteria didnt develop alzheimers disease
but
when the gut bacteria from mice who did get alzheimers disease
were introduced to these gut sterile mice
they developed the amyloid plaques of alzheimers disease

if this transfers to humans
which it probably does
our gut bacteria makeup may be a determining factor
in whether we get alzheimers disease
or
how severe the disease is

my guess
is that this like the 36 point plan
will be part of the overall regimen one gets on to
slow down the disease process
or
if we are lucky
to prevent it from starting in the first place

so
could we be having gut bacteria transplants in the future
i definitely would go for one if it is shown to help
i wonder how they give it to you
i hope not in a milkshake



this weekend i will be giving a talk on
clinical studies
the clinical study i am in
what testing needs to be done to access ones memory
a review of my story over the last 6 years

it will be at the san gabriel presbyterian church
on williams drive in georgetown texas
sunday afternoon at 300 pm
it is open to the public

then
next tuesday is the big day
i get my amyvid pet scan of the brain
if its positive for beta amyloid i am in the big aducanumab alzheimers treatment study
if its negative for beta amyloid i am not in the study
but that means i probably dont have alzheimers disease
a good thing either way

the organicgreen doctor

hope for the future

HOPE FOR THE FUTURE

these kids and their generation and the generation
just above them
are the hope for the future
for everything but especially for
a cure or preventative treatment for
alzheimers disease

i can see it like way over there in the horizon
like when you travel in the dessert in the early evening
or early dawn
way off in the distant you see those glittering lights
and those areas of green

hope is out there but its way out there

the cure and treatment will probably come too late
for my generation
but
it will be there for these little guys and their soul mates

a new study i read about this morning was done on women
who took multivitamins with minerals long term
they had a 35% decrease in their risk of dying from
heart disease

now i know from all my reading on alzheimers disease
that generally whats good for the heart is good for the brain

there right now are so many exciting potentially game changing
studies with different new drugs and treatments


the A4 study
folks will be given the new alzheimers vaccine  who
have positive scans that show they will probably get
alzheimers disease but have no symptoms
the vaccine will remove beta amyloid from the brain
thats the bad stuff that is thought to be the culprit in
alzheimers disease
if it works they wont get the disease or will slow down its
progression


the apoe4 studies
folks who have the double apoe4 gene like i have
which puts them at high risk for developing alzheimers disease
will be given the alzheimers vaccine

other folks will be  be given a bace inhibitor which stops
the brain from producing the bad stuff beta amyloid


colombian studies
folks who have the dominant gene for alzheimers disease
and all yes all of them will get it in their 30s to late 40s
and die from it
they will get the vaccine also

so using the vaccine and the bace inhibitor will be thoroughly
tested and we will know in 3-5 years if this approach will
work
if it does we will see this form of treatment get fast tracked
to folks who are early like me or who are at high risk
like
eg my siblings who arent affected yet
they can be screened with scans and spinal fluid analysis
if they are positive
then they could be started on a lifetime of treatment

so maybe this is the hope for the future we are looking for

of course if it doesnt work we are knocked back to ground zero
but
there are lots of other studies being done


the noble t-817ma study just got fast tracked some because of some
promising new studies showing it may help
basically this chemical promotes the new growth of new nerve cells
and
inhibits brain cell death


the sniff study just started one that i might get involved with
basically insulin is sprayed up the nose
goes up the smeller nerve thats the olfactory nerve to the
part of the brain where alzheimers disease starts
it increases glucose to the brain cells some damaged and some not
preliminary studies shows that folks who use this
have an improvement in memory

i expect this will work some and will become part of a
treatment regimen for folks

so these studies above are ongoing now
in humans
and will be available in 5-10 years if they help

some hope for the future

there are lots and lots of studies in animals usually rats or mice
that seem promising
like the stanford study studies on multiple older meds like
citalopram bexarotene etc


then
there is the reversal of cognitive study from ucla that was published
last year that use 36 points
half were healthy things like blood pressure cholesterol diabetes control
exercise diet sleep mental activity meditation for me thats gardening
and making sure your numbers are ok like thyroid b12 homocysteine
vitamin d hormones
then the rest was supplements based on human and animal studies
that showed promising results

he had 9 of 10 people with memory loss get better
the one that didnt had more advanced alzheimers disease
most had memory loss documented on memory tests
some had abnormal scans
when they went off the regimen they got worse again
so
theres something in what is in that 36 point study

maybe some it will be related to the new study referenced above in
women with lower heart disease rates who took multivitamins with minerals

so
in summary
there is hope for the future
for
we always have to have hope dont we


fyi
there are only 12 tickets left for the special showing of still alice
they are along the back row of the auditorium
thats actually where we always like to sit at the alamo drafthouse

the organicgreen doctor

talking and more on the study

TALKING AND MORE ON THE STUDY
i enjoy doing talks on alzheimers disease
especially doing q and a ones

this week i did a two hour talk to a small group
as part of a two day seminar for cmes for
memory care facilities

so many of the facilities now are using techniques to
handle the residents that have been proven to work so much
better than the old methods of
sitting them in a chair all day
over medicating them
not keeping them active mentally and physically
its really changed a lot in the last few years

the best ones ive visited have incorporated these techniques
in their facilities

i spoke of the common dementias
talking the most of course about alzheimers disease
since thats what i know best

besides alzheimers disease
there is
dementia of lewy bodies caused by the deposition of a protein
in the brain called lewy bodies
the comedian robin williams had this
its probably the worst to get
it strikes younger folks in their 50-70s
it hits fast goes fast
and is devastating to the families
its like what i call alzheimers on steroids

vascular dementia caused from strokes or minstrokes
commonly seen along with alzheimers disease
the symptoms are variable based on where the stroke is

parkinsons dementia that comes usually several years after
the movement disorder of parkinsons starts
its symptoms when it happens is like dementia of lewy body
it can be a difficult one for families also

frontotemporal dementia patients have shrinkage of the front
and side of the brain
symptoms are based on the damage done to these areas
behavior is an issue
they lose all inhibitions
another bad one

then i talked about alzheimers research
which i know more about
and
spent time talking about
dr bredesens article on reversal of cognitive decline

i found a good article from webmd about the study
here is the link
click here

until this 36 point plan is proven not to work i will
continue to be a believer in it
and will be following it myself

half of it is stuff we all should be doing


the good thing about dr bredesen is that he is a well respected
alzheimers researcher
he just received a multimillion dollar grant to further his other
research in his lab
so
hes not some off the wall researcher that is spouting some
weird recommendations

he just is thinking outside the box
sometimes those folks make the best researchers

he does say that there are a lot of pills to take
i have added now close to 20 a day to my regimen
it can be expensive
however its about half the cost of a  prescription of namenda
or exelon

he also says and i understand that myself that this is not a cure
for alzheimers disease
its not going to stop the disease
hopefully it slows things down for me
so
if i gain a few years its worth it to me

if you have a group like a club or church group that would
like to have me do a q and a or a talk for them on
alzheimers disease  i would be glad to do it

the organicgreen doctor