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-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-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-getting it right

ALZHEIMERS DISEASE-GETTING IT RIGHT

in the past it was not always easy
to get the diagnosis correct
especially in the early stages of the disease

here are the stages that lead to alzheimers disease

prealzheimers-no symptoms yet

mild cognitive impariment(mci)-mild symptoms like me
some believe mci is early alzheimers

alzheimers disease-more advanced symptoms

even 7 years ago when i was diagnosed with mci
mild cognitive impairment
it was thought to be probably due to alzheimers disease
based on memory testing and history taking
but
really there were not anything else to do to come up with
a more accurate diagnosis

if you are wrong with your diagnosis
then you
start treatment with aricept (donepezil)
have the patient go through the side effects of the medicine
for years
and
if the diagnosis was wrong
well you just made a persons life more miserable than
the disease the person really had

of course in the workup of things that could cause memory issues
that are easily treated are ruled out
like abnormal electrolytes low b12 low thyroid depression
sleep disturbance etc

sometimes whats left is not always alzheimers disease
but may be caused by benign causes that really wont
worsen over time or will go much much slower than
alzheimers disease

so now in 2017
to have a workup for memory loss that appears to possibly
could be maybe alzheimers disease
the usual workup like i had at first is done
ruling out treatable stuff
if it all points towards alzheimers disease
then a more definitive diagnosis can be made

if its memory loss not due to alzheimers
you may not need medication and its accompanying side effects

if it is alzheimers
then there are a lot of research studies going on and are about
to happen on potential treatments for alzheimers
if you know you probably have it you can make yourself
more available for treatment

now you can have genetic tests done
for early onset alzheimers disease the inherited kind
apoe 4 gene signifying increased risk for alzheimers disease
a spinal tap and analysis for beta amyloid and tau
abnormal levels imply you have alzheimers disease

then
as a new study is showing
read this article on it
that the use of the pet scan amyvid for the bad beta amyloid
the hallmark of alzheimers disease
can rule out alzheimers disease as the cause of the
persons memory loss

insurance and medicare and medicaid will not pay for this test
however medicare medicaid and other organizations are sponsoring
a study to see if it really makes a difference these scans

its called the ideas study
i was attempting to get into this study to see if i could get the scan done
but i luckily qualified for the aducanumab study that i am in now

so what they have found is
that a significant number of people who have the diagnosis of
mild cognitive impairment and are on meds like aricept (donepezil)
really dont have alzheimers disease
based on the fact that their amyvid scans are negative

if your amyvid scan is negative you do not have alzheimers disease

i would hate to think that i took all this aricept (donepezil)
had all the side effects like dizziness blurred vision sleep disturbances
occasional veritgo fatigue leg cramps vivid dreams
and fasciculations

whats fasciculations
well eg you can look at my calves
and watch my muscle fasciculate
it looks like something is crawling back and forth under my skin
its from the aricept (donepezil)
people with other neurological diseases like huningtons disease
have them also

so these folks who have negative scans can now stop the aricept
i would love to be able to do that
and
almost get a reprieve from a terrible fatal diagnosis

granted their memory may not ever get better
but
it may not ever get worse either

physicians who referred their patients for the ideas scans
found that over half the mci patients didnt really have alzheimers
75% of the alzheimers patients did

no
sorry to say
my amyvid pet scan is positive
so this ideas study wouldnt have helped me any
except verifying the likelihood that i have alzheimers disease

note
other things can cause the scans to be positive
but
if its negative its not alzheimers disease

they need more folks for the ideas study
if you know someone who might qualify
here is the link
ideas study information

remember
we need financial support to fight this disease
and
emotional support to deal with it

join us as we walk this year

we will be doing the
alzheimers texas walk in georgetown texas
on saturday september 23rd
team name is organicgreendoctor

yes we will be in georgetown for the above walk
as we walk with our austin friends and family
do join us
come say goodbye to us

i also will have a team in the
santa barbara walk to end alzheimers 
on saturday october 28th
team name is organicgreendoctor.com

join us

the organicgreen doctor

lists

LISTS
im a list maker
i didnt just start since i had to retire
and
since i was diagnosed with the mild cognitive impairment
better known as mci

im a list maker from way back
just ask my wife my kids and my nurses
im sure they hated those lists

so far im not too bad about forgetting things
but ive noticed im more likely to miss things in the last
3 years than in years past

i think part of the problem besides the mci is i
get busy doing something and get distracted and
just forget to do it

ok sometimes i do it on purpose
because i dont want to do it
and
sometimes its a project that if i do it
it seems like when thats done i wont have as much to do
like finishing painting the trim on our doors
have the paint even primed it already
awhile ago
its just one of those things i cant seem to do
it just doesnt make the daily list sometimes

then
theres the put off list
get tax stuff together for the tax guy
move the furniture for my wife she
dig up those prickly cactus
clean out our totally trashed and junked barn storage area
etc etc etc

also ive gotten a lot busier since i retired
so i dont have as much free time as i did
when i first retired

im not regretting that as i feel like im doing good
doing habitat houses running meals on wheels and
promoting alzheimers awareness by talking about
alzheimers all the time giving talks on it and serving
on the walk to end alzheimers committees and
a state wide alzheimers committee

so my list is made every day
today eg
go to house one at habitat
plant 7 shrubs
finish rock ground cover around the mailbox
finish edging the new beds with rock obtained from
a local church and from another work site
fix gutter
edge the sidewalks and curbs
pick up my large logs from the tree we cut down to use
at my house for edging around my new anthill garden
where ill plant my tomatoes

go to house 2 to finish the rock corner where the water
drains off the property to slow down the runoff
plant the pride of barbados shrub in the bed in the back

go to house 3 to water the  large transplanted crepe myrtle from
water brought in with my portable rainwater tank
since theres no water connection yet
pick up rocks for house 1

go home after lunch
nap
help prepare supper
eat
nap
go to bed

ah the joys of retirement

so thats how i do my list each day

my wife she sent me this list of 35 things to do in austin texas
before you die
ive done nine of them
one that i havent done i want to is the broken spoke
the dance hall place that many of the old country western guys
and gals have played at
especially willie
its now got sandwiched between apartment buildings
an austin landmark for sure
another is ive never swam in barton springs but ive been there
guess that counts right
one my wife she has done that i dont ever plan on doing
is waiting in line for franklins bbq
she had a grand time waiting in line with all those folks
from everywhere for 3 hours
i agree the bbq was worth it though

the good thing is that i knew what all 35 of them were

so yes im a list person
always have been
always will be
of course as time goes on those lists become more important
dont they

the orrganicgreen doctor

the anniversary

THE ANNIVERSARY

its that anniversary time
its been 3 years since i was diagnosed
and
had to discontinue practice

it was a few weeks earlier than that i knew that the
time was coming
when i had my testing done and got that phone call that
i needed to see a neurologist
teach me to volunteer to be in that normal control group
of the alzheimers disease neuroimaging initiative study

it was a life changer
volunteering for that study and getting blindsided by my
diagnosis
early mild cognitive impairment amnestic type
thats probably due to alzheimers disease

wonder what i would be doing if i had not decided to
volunteer for that study

well i probably would be officially retiring about now
which was the date i had planned a few years ago

i wonder if i had continued to practice if i would have
had problems
i think i would
not routine stuff but as things got hectic eg like in
after hours clinic when you are real busy and have
to keep up with several sick persons at one time
i wonder i would have had problems doing it
i think so based on what i have noticed personally with
some memory issues that probably no one else notices

my most read blog ive written was this one
written at that time
last day-thanks
and the ones that follow that one for a few days

like a bullet that hits a metal object and careens off in
another direction
thats what happened to my life that day

so for the last three years i have stayed busy
being involved with the alzheimers association
talking about alzheimers disease to anyone who will listen
telling people what they can do to slow down the chances
of getting this disease

since all this has happened ive watched my younger brother
deteriorate and die from this terrible disease
alzheimers disease

a real sobering event for me as he was the mirror i looked in
as i know that im somewhere behind him

i have given several talks telling my story with possible alzheimers
disease letting people know how i was accidentally diagnosed
what medications are used in this disease
remember none of them stops or treats the disease
what research stuff is going on and what treatments are on
the horizon and what they can do themselves to maybe
prevent the disease or really slow it down

i am still taking aricept (donepezil) that slows down symptoms
but again not the disease
i control my blood pressure cholesterol weight diet and stay
active mentally and physically

i volunteer at habitat for humanity building houses and do
most of the landscaping now for the houses
something that was mostly ignored in the past

i also run a 30 mile meals on wheels route each week

i also do a lot of gardening here at the country n
and try to encourage as many people as possible
to do their own organic gardens

i do this blog almost every day monday through friday
about these things above and other things that interest me

one goal is to write down whats happening inside my brain
as this disease progresses and takes off
this has not been done much in the past as people werent being
diagnosed until things were much worse
and doing writing for a blog like this would not be possible

my disease hasnt progressed much in the last three years
but it has progressed in ways i notice but others probably
dont notice but its there if they are real observant

the disease starts slow real slow then picks up speed
everyones speed is different
and the degree of destruction along the way is different also

i read blogs and am contact with others who are early like i am
except they are farther down the journey than i am
they are excellent writers and are able to put their thoughts
down in an eloquent way

i hope to do as well as long as possible

so its my anniversary
my 3rd one
the slope for now appears to be a slow one
thats ok with me since i have a lot i want to do

follow me along this slope

the organicgreen doctor

bbb bace

BBB BACE

faculty.washington.edu

bbb for those not in the medical field
means blood brain barrier
its a protective barrier that keeps drugs medicines
viruses bacteria parasites and chemicals from reaching
the brain and causing havoc

a protective mechanism that has evolved to protect the brain

it also prevents however medicines sometimes from reaching
the brain that may be helpful eg in preventing and treating
alzheimers disease

in a study at the university of pennsylvania they used ctb (cholera toxin b)
that easily goes across the bbb
they then attached mbp (myelin basic protein) to the ctb
mbp degrades beta amyloid

they then attached fluorescence to the ctb-mbp and the
mbp appeared in the brain as seen by the fluorescence in the brain
and the level of that awful beta amyloid that is thought to be the
cause of alzheimers as it accumulates or the end result of
whatever the process is that causes alzheimers
went down as the mbp degraded the beta amyloid

so you could take a chemical that treats alzheimers and
attach it to ctb
give it to a patient by mouth
the drug would then cross the bbb and slow down the production
of the amyloid that may cause alzheimers disease

this was done in rats of course
next stop hopefully is humans


bace is the abbreviation for beta site app cleaving enzyme
the bace enzyme breaks off the protein that may be the culprit
in alzheimers disease
the beta amyloid protein
people who have a defect or mutation in the gene that makes
bace
have a lower instance of alzheimers disease

in comes the drug companies
they have made eg merk a compound called mk-8931
that inhibits this bace enzyme

its an oral drug that has already gone through phase 1 studies
and is now entering phase 2 and phase 3 studies in patients
with mild to moderate alzheimers disease
the drug will lower the levels of beta amyloid in the brain and hopefully
by doing this will slow down or prevent alzheimers disease
thats the theory

now the mk-8931 will be used in prodromal or prealzheimers or
amnestic mild cognitive impairment in patients who may have
a positive beta amyloid pet scan and abnormal levels of beta
amyloid in the spinal fluids
two positive tests that are seen in alzheimers disease

hum that sounds familiar
oh wait thats me
i have all those things except i dont have my beta amyloid pet scan
yet but i will soon
the thinking is to attack this early on in the  process before
things get worse

if i qualify for this study then i would take this mk-8931 for a
period of time and they would follow cognitive tests and spinal
fluid levels of beta amyloid and pet scans of the brain for
beta amyloid
or
i would be in the placebo group
that would suck wouldnt it to be in the placebo group


there is progress being made it seems
there is this light in the end of the tunnel that is faint
but its starting to get a little brighter




the organicgreen doctor