alzheimers news-its not fair

ALZHEIMERS NEWS-ITS NOT FAIR

its not fair
that im still here and he is gone
we were born almost a year apart
we were really
almost like twins
fraternal twins
we were different but we did a lot together
some of it mischievous
quite mischievous

i wont give you any details
even though the statue of limitations are past

we have the same genetic background
now i know i have the homozygous double apoe 4 genes
im sure he had at least one if not two of them
he probably got two of those late onset alzheimers apoe 4genes

it doesnt seem fair though
that he got it so young in his early 50s
then once diagnosed
it seemed he just had a steady decline
down that final slide that people with alzheimers disease
have
one that once it starts cant be stopped

even in the future when new treatments come along
i doubt that when the slide starts that even this stuff
will work

he died in the last stages of alzheimers in august 2013
at the age of 62
i was 63
i had been diagnosed almost 3 years before he died with
mild cognitive impairment due to alzheimers disease
my memory had started a slow decline during this time
but
for some reason he has stopped that decline

i really thought that today at 68 that i would be where he was
when he was diagnosed
meaning that that decline would have started to begin
for me

it hasnt
my memory is stable
if not better
my health knock on wood seems to be good

why me
why not him

i think i was sort of lucky by accidentally having my memory issues
picked up real early before it was noticed
i had volunteered to be in the adni alzheimers study in the normal group

my early diagnosis made me change my life before symptoms showed up
being aggressive doing all the healthy things that one needs to do
to slow things down

its been shown that early diagnosis does alter that downward trajectgory
so that the decline when it happens gets pushed down the road some

when he was diagnosed it was probably too late to do much intervention
since its being shown that if we are going to stop this disease
it has to happen in folks before they have have symptoms
or
in folks extremely early in the disease process like i am

looking at whats going on in alzheimers research
there will likely be a treatment or treatments in 10 years
that will slow down the disease or stop it in its tracks

i think
what if that stuff had been available 15 years or so ago
for him and my mom
they both might still be with us
as would many of your loved ones

so
get diagnosed early
maximize your health
blood pressure cholesterol weight exercise diabetes sleep mental health issues
stay mentally active
consider supplements
volunteer for a clinical study see clinical trials.gov
youll know where you are with the diagnosis so when its time
for you to get treatment then you will know if you have it or not

his birthday is on april 8th
he would have been 67
he died in hospice on august 8 2013
he is missed by friends and family
especially his wife and kids and grandkids and siblings

we all would like to be able to see his smile again

we need a treatment and cure for this awful awful disease

the organicgreen doctor

alzheimers news-its time

ALZHEIMERS NEWS-ITS TIME

briefly here is a quick version
of my story
with possible alzheimers disease

i had a normal memory test 8 years ago while applying for
long term care insurance
then
when i volunteered to be in the normal control group of
the large alzheimers study called adni
it was found that i had short term memory loss
diagnosed as mild cognitive impairment amnestic type
thought to be the precursor of alzheimers disease
some think it is early alzheimers disease

i quit work because of the diagnosis
and was placed on aricept (donepezil)

i reentered the adni alzheimers study in the
mild cognitive impairment group
finishing that study last year

since retirement i got aggressive with my health
controlling all my health parameters like sleep blood pressure
cholesterol changing to a 90% vegetarian diet
staying active physically and mentally
staying busy and happy

i was found to have low b12 and low vitamin d3
and high homocysteine
i take b12 and vit d3 and folate and b12 to correct these
abnormal labs respectively

so now after 5 years my memory is back to normal for my age

i also take 12 supplements a day based on a study from ucla
that showed folks got better on it
not proven yet in a larger study but not disproved either

so doing all this something made me better
maybe the aricept (donepezil)
maybe the supplements
maybe correcting my abnormal labs
maybe getting aggressive with my health

my opinion
it was all of these together

will it all keep me from getting full blown alzheimers disease
if i have it
probably not
its just delaying things for awhile
hopefully a long while

the things that make me think this may have been alzheimers
are
a normal memory test then 3 years later its not normal
a strong strong strong family history of alzheimers disease
both parents and two siblings
an apoe 4 double gene that increases the risk for getting alzhiemers disease
a spinal fluid analysis showing the bad beta amyloid level and the
tau protein levels are abnormal

so where am i in this quandary
do i or dont i

well
there is a test called
the amyvid pet scan
it will show if a person has the accumulation of beta amyloid in the brain
that is the hallmark of alzheimers disease

so if i have the scan done

if its normal
its not likely i have alzheimers disease
if its negative i will stop my aricept (donepezil) and move on with my life

if its positive
it doesnt mean i have alzheimers disease as other things can
cause the accumulation but usually its alzheimers disease
adding up all my other risk factors
basically
if its positive
i have alzheimers disease

so its time
next tuesday

i go up to the alzheimers disease center at ut southwestern
in dallas for my annual evaluation

also there are new studies all treatment ones that are starting up there
sadly to say
i probably will not qualify for them
i am either too normal or too abnormal for them
all of them do the amyvid pet scans
so if im in the study i will get a scan and unlike the adni study
i would get the scan results

my guess i will not qualify for them

another study about to start soon up there
is the ideas study sponsored by medicare
to determine if the amyvid scan is useful in private practice
i say yes
its used already in private practice all the time

when i look at the criteria for the study
it looks like i qualify
based on using the scan to determine
whether i need to be on medicine
and
how i need to plan my life if its positive

the problem is i have been waiting for all these studies
now for 3 years hoping i qualify for them to get an amyvid pet scan
for free
at the same time helping advance knowledge about the disease
and
if i qualified for a treatment study
actually getting treatment years before it got onto the market

so back to next tuesday

i will ask
do i qualify for a treatment study
no they say
then
i will ask
when is the ideas study starting
if its not before the end of the year
then
in my hand are two orders for the amyvid pet scan
one here in austin
the other at ut southwestern

all i have to do after tuesday
is schedule it
get the results not long after that
then
i will know where i am with all this
then
ill plan my life accordingly
stopping my aricept if its negative
but continuing everything else i am doing

i will look closely at my future
if its positive
continuing the aricept (donepezil)
then i and my wife she need to be more aggressive
about decisions for our future

yep
its time

the organicgreen doctor

be aware this month

BE AWARE THIS MONTH

this month november is purple month
its alzheimers awareness month

unless you have had your head in the sand the
last few years
you have been hearing and reading a lot about
alzheimers disease

read this blog and you will read a lot about it
for sure
especially on fridays

the article that was in the statesman this last weekend
updating my story with possible alzheimers disease
came out at a good time to start the month off

here is my alzheimers awareness month schedule

today my wife she and i travel to dallas to ut southwestern
where i will have my annual mri of the brain for the
adni study that i am in
they put me in the mri scanner and put a marker on my
temple
they take extra closeups of the hypothalamus area
since thats where alzheimers starts
they then run it through a computer program that analyzes
the size of the hypothalamus comparing it to the previous
ones that i have had five i think
so subtle changes can be detected if the area has shrunken
as thats what happens with alzheimers disease the brain
shrinks like a grape turning into a raisin

now as i enter that mri all confined in that cylinder i
will be reminded of an article posted on the internet
about the lady who has some problems being confined
in that mri machine
warning there is bathroom humor in the article
if that offends you then
dont click here


then this weekend we will be doing the
walk to end alzheimers walk in little rock arkansas
walking with my family and friends on my brothers team
#joe nash
in honor of him and his familys fight with his long
journey with alzheimers
may he rip now


i will do five walks this year
3 i am on the organizing committees
but this one is the one
that bothers me the most when i do the walk


tomorrow sometime while im there
i will pause
and
have a moment of silence
thinking of him


then next monday i will be doing an hour and half
question and answer session on alzheimers to
a group in texas from 10-1130am at the cowan
auditorium in sun city georgetown texas
these i like to do as i let the audience decide what
questions and what direction the session goes

this month at www.austinregionalclinic.com
thats the clinic i use to work for
they will be doing an article for alzheimers awareness month
about me and with quotes from me on alzheimers disease
its not there now but it will be maybe next week

then later this month the texas capital chapter of the
alzheimers association will be posting at their website
and in the media and on social media
a video of myself and three other people affected by
alzheimers disease
when it appears i will post it here and on social media

so lets make this november
a good alzheimers disease awareness month
since
we are all affected in some way

the organicgreen doctor

thanks

THANKS

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

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


for those who asked
here are the studies i am in

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

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

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


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

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

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

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

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

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

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

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

exercise

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

control diabetes blood pressure cholesterol

be happy stay mentally active stay socially active

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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


vote tomorrow even if you dont vote like i do

the oganicgreen doctor

veni vidi vici

VINI VIDI VICI
thats what i did yesterday


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

a sign is what i thought both of these things were

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

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

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

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

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

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

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

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

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

no placebo please

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

more when it happens

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

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

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

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

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

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

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

i think its a sign dont you

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


the organicgreen doctor

important day

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

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


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

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

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


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

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

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

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

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

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

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

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


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

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


examiner.com

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

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

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

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

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

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

the organicgreen doctor