alzheimers news-is there room

ALZHEIMERS NEWS-IS THERE ROOM

thats the question raised by a recent rand corporation study on
what would happen if a treatment for alzheimers disease
came on the market

well that very likely will be a reality in less than 5 years
if some of the drugs show promise in fighting this disease
get approved for use

biogen which makes the aducanumab drug i take each month
sponsored the rand corporation study

the result of the study i am in will come out in 2019
if the results are promising the drug will be approved
soon after that

they probably will go after folks who have changes in the
brain already of alzheimers they just dont know it yet
the prealzheimers or prodromal state
ie normal memory with positive scans
and
those like me with early symptoms

if you are too far long with the disease its probably too late
to get treatment

now recently in this blog i wrote titled
alzheimers news-can we afford it
that we basically may not be able to afford these treatments
at the same time we cant afford not to do them

lets say in 2020 a new treatment becomes available
there are literally thousands of people no thats millions
in just the us who will fit the criteria for treatment
eg
me when i was 55 i would have had a positive scan
thats when if not earlier i would have wanted to get treated
to get maximum effect from the drug

so what would it take to get diagnosed and evaluated
to qualify for treatment

first
you go to a doctor usually a specialist like a neurologist
a geriatrician or psychiatrist
its usually a neurologist
there arent enough of them available
now remember we are talking about several million folks
needing to see the specialists
can you imagine the back load of appointments just to get
seen
then
the work up will include probably the amyvid pet scan
for the beta amyloid
its the stuff that the aducanumab removes

remember we are talking millions of people here
after finally getting into the neurologist
now need the amyvid pet scan
there are not enough scanners that do this in the us
to do all the scans that will need to be done

can you imagine the delay its going to take to get
your diagnosis

then
this stuff will probably be given in infusion centers
the ones where things like
chemotherapy is done
infusions for ms connective tissue diseases like rheumatoid
lupus ulcerative colitis psoriasis etc

you can see the backlog that will build up just to get the infusion
whenever you finally get diagnosed
then
especially early on
will there be enough drug available for all these folks who
will need treatment

the rand corporations conclusion is that it will probably take
18 months to get seen and get diagnosed before receiving
treatment

as those of us know who are familiar with alzheimers know
those two years are a long time in alzheimers time

it is predicted by the study that starting in 2020 over the
next 2 decades over 2 million people will develop alzheimers
waiting for diagnostic studies and treatments

we will be at the finish line but we wont be able to cross it

i feel like those of us needing treatment
are like charlie brown when he goes to kick that football
lucys gonna pull it away at the last minute

the organicgreen doctor

alzheimers news-26 weeks in

ALZHEIMERS NEWS-26 WEEKS IN

today marks the 26th week into the biogen aducanumab study
for hopefully slowing down this disease
for me for now if i didnt get the placebo

for the rest of you if this stuff actually works
it will be available to you eventually

eg those of you who have  matching dna to mine
this may be a drug you will get
some of you even before you have symptoms

thats where all this is heading

this 6 month testing today is important
for this drug this infusion to work
it has to do two things

first   it has to remove the bad beta amyloid from the brain
and
keep new amyloid from being deposited

second   the memory testing has to show no change or
an improvement in memory

this second one has to happen or this stuff isnt helping
the first one well that happened in everyone who has had this
in early studies

so for me
this is an important day
although i will not ever see the results
but
when the memory tests are done
since i have had enough of them
and
have actually administered them to folks
i know how i do when i take them

first
they isolate us my wife she and i
like you know when the police isolate suspects
well i guess thats not a good example

they ask her questions about how i am doing
has she noticed things etc
then
they ask me similar questions to compare our answers

we my wife she and i always joke
i do better than she does on some of these

then
its several different memory tests that are done
similar to the moca and mmse that are done in a lot
of doctors office
i scored low 7 years ago but have improved over that time

when all these are put together
they are compared to my memory testing done over 6 months ago

if i got the real stuff they should have improved
if this stuff works
and
if i got the real stuff


then after lunch
i get the pet scan called the amyvid scan
it tests for the beta amyloid thats accumulated there
the scan on the left above is positive
the scan on the right above is negative

i also decided to do a substudy where they do more pet scans
than on the other study subjects
even though like the memory tests ill never see the results
the more data they can get the better the results are at the end
of the study

so
if this stuff is working if i got the real stuff
then
my pet scan will look better
at the end of the study
it should be all clear

again though
the memory has to not get worse or get better
for this drug to be a success

the amyvid scan uses a radioactive substance to highlight
the beta amyloid in the brain
if its all red like in the initial scan above on the left
then the scan is positive
if its still red after the study is done
then the stuff either it didnt work or you got the placebo

everyone in the study has a scan that is positive at the beginning

if its not red after getting the infusions then it looks like
the scan on the right
it means the amyloid is all gone
thats right its all gone
initial testing in other studies show this stuff removes the amyloid

this is an important visit
as in one year this part of the study ends

when they look at all the results then
if it appears to be working and there are no significant side effects
then
all of us will get the real drug infusions for another 3 years

what i hope is
i got the real drug to begin with and not the placebo
i think i may be getting the real drug based on some of my side effects
then
i hope this stuff really works

help us find a cure

my walks


alzheimers texas williamson county walk september 23rd


santa barbara walk to end alzheimers october 28th

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

my head hurts

MY HEAD HURTS
thats what i told my wife she
last week as i was headed towards getting my mri

thats good she said
no
she wasnt being mean to me
she like me knows that if my head hurts a week or so
after getting my infusions of the aducanumab
thats a good thing

thats a side effect of the medicine
since
if i get headaches
that could mean i am getting the real thing

however
i will never ever know if i did get the real thing
unless
this mri shows something

the way this stuff works
the aducanumab
is it is an antibody to the bad beta amyloid that forms
plaques in the brain
beta amyloid plaques
these plaques damages brain cells
thus
the beta amyloid theory of what happens in alzheimers disease

remove these plaques then you are slowing down
or
if we are all lucky
stopping the disease in its tracks

the headaches
if they are caused by the aducanumab
occur in folks who receive it who have the apoe 4 apoe4 gene
which i do

for some reason those of us with this combo
are at risk as the beta amyloid is being removed
of getting micro bleeds
like
when you remove a scab off a wound
and
it bleeds

so you can get these when you remove the plaques of beta amyloid
with the aducanumab
however
if you get these micro bleeds
you get ousted from the study
since
things have the potential to get worse if it progresses

so if they call me to tell me the results of the mri
thats not a good thing
not hearing anything
thats a good thing

now dont worry about me
getting bleeding in the brain

i had headaches 24/7 after the first infusion
that lasted a week
however
that headache the other day was the first one i have had since

i have a different feeling
a different approach
i like having the headache up there
i usually wont even take a tylenol for them
they just remind me
that maybe
just maybe
i am one of the lucky ones that is getting the real thing
the real deal
i want to experience the full headache
its almost comforting knowing that its there

then
i do have about a week of fatigue two weeks after the infusions
that lasts about a week
i am in that time period now
just ask my relatives and friends i am visiting
as i fall a asleep mid day while visiting with them
ok ok
i do admit
that ive done that to them before over the years
not able to blame it on the aducanumab in the past
but
i can now

as i progress in the study
i count a total of 7 mris i will have over the course of the 18 month portion of the study
i count a total of 3 amyvid pet scans the pet scans for beta amyloid
i count approximately 20 infusions of the aducanumab

i would love to see that last amyvid scan thats done at the 18 month mark
if i got the real deal
the aducanumab
all that beta amyloid will be gone
if i didnt get the real deal
if i got the fake stuff the placebo
then that scan will still be positive like it was when it qualified me
for the study

at least next year
if this stuff is working for those who get it
and
not causing too much side effects
then the stuff i will be getting in my infusions
will be the real deal stuff
the aducanumab

so
thats why i get excited
when i have side effects
when my wife she is glad when i get a headache
when i fall asleep on everyone while i sit on the couch

weird huh

the organicgreen doctor

alzheimers news-your questions answered

ALZHEIMERS NEWS-YOUR QUESTIONS ANSWERED

i get questions about alzheimers frequently after posting the
alzheimers news segment each week
from emails
from facebook messages
after doing my talks on alzheimers disease

in fact
my favorite talk i do
is to simply stand up and answer questions from the audience
families and patients and friends just want answers
many cant get them by reading the internet and asking their
medical providers

i have been through this with two family members
granted i wasnt there for the day to day caregiving that
is so trying on families

i have spent hours and hours over the last 6 years reading
about alzheimers so i have become well versed in
alzheimers and with what research is going on

now
that i know i truly have alzheimers disease
i can now truly speak as someone who has the disease
albeit very very early in the process
but
i know that it can suddenly take off
and proceed rapidly
so
thats why my day to day decisions are based on what could happen

i may be lucky
in that this aducanumab might be the reprieve im looking for
the next 5 years will tell if it really works as advertised

after last fridays blog
i got tons of comments and questions

i was asked and this is a frequent one
what can a loved one do if their affected loved one is more advanced

eg
one person wanted to know if their spouse would qualify for
this study
i asked questions about the spouses health
it was obvious from the answers and the persons medicines
that they were more advanced

i try to be honest with my answers
because i feel like thats what people really want and i would want

i told the asker
no they wont qualify they are too advanced
there really is not anything to do to stop it
my advice is to maximize their health
keep them as mentally physically and socially active as long
as possible
provide love and comfort
and
take care of yourself the caregiver
thats the one that most spouses or kids forget

i was asked several times where and how to get the amyvid pet scans

my reply
they are available at multiple sites in texas
probably most states do them
they are not paid for by insurance companies
they cost between $3500-$5000
i got mine free via the study

here is a link to my blog about how to get one free
if you meet the criteria
http://www.organicgreendoctor.com/2017/03/alzheimers-news-good-ideas.html

not everyone with memory loss needs these
i consider them the icing on the cake test

a memory loss patient should see their primary care provider
or a neurologist for a stepwise complete workup
like
a good medical history and physical looking for causes
basic screening labs
good memory testing
maybe an mri of the brain

most folks can stop there and not need more information
eg
my two brothers got all this done
their diagnoses were able to be made from this workup
an amyvid pet scan would have been a waste of time and money

my mom fell and hit her head and had a ct scan which showed
diffuse shrinkage of the brain
this is caused usually by alzheimers disease

but in cases like mine since i was so early
i had

the genetic tests
note i will write more on those tomorrow on my blog

the spinal tap for the biomarkers amyloid and tau
are helpful in making sure of my diagnosis

then
like i wrote above
the amyvid pet scan was the icing on the cake
now i certainly know
what i have
what will happen if i dont do something
since i have personally seen what happens

another question is
where can i get tested or where can i get involved with research
all primary care  providers can do this testing
if they are not interested seek out a local neurologist or memory care center
like the one i go to

if i was still in practice i would do these workups myself
since i now know more about how to do it now and how to interpret them

if you are interested in being in research
or
if you are interested in being followed on a regular basis like annually
to be closely monitored

in texas
the tarcc group at this link
http://www.txalzresearch.org/volunteer-for-alzheimers-research/

they will start seeing you at 50 years old
even if you have no symptoms
they will do a neurological exam memory testing baseline labs and maybe
an mri
your data is kept in research and should not reach your medical record
why
read my blog tomorrow

for someone who has a family history and is worried about getting it
this is a good thorough way to do it
at no cost to you
anonymously from the medical records usually

other states may have similar programs at most of their
universities memory centers or alzheimers disease centers

for the study i am in
go to
clinicaltrials.gov
type in aducanumab
then type on the studies they are recruiting for
find the nearest location
note this list is not complete
it doesnt have the ut southwestern site listed

here is biogens site about the aducanumab study
https://www.engageandemerge.com/

so remember
if you are worried get evaluated
if you have a family history or want to be monitored do the
monitoring as above
if you want to contribute
volunteer for a study and or donate to the local alzheimers groups
the biggest obstacle to getting alzheimers research done is
money and volunteers
if you are a caretaker
take care of yourself

always feel free to ask me questions on this blog
i screen the questions and post them and my replies
i will answer messages via facebook
i answer lots of questions at my alzheimers talks

my next presentation is at
the 5th annual alzheimers symposium
mayborn convention center
temple texas
friday april 28 2017

i will do my talk that day
then
answer questions after the talk from the audience
then
i will hang around for awhile if folks want to ask
me questions one on one


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-a good ideas

ALZHEIMERS NEWS-A GOOD IDEAS

the bad beta amyloid accumulates in the brain as alzheimers disease progresses
it can be detected in the brain by doing a pet scan of the brain called
the amyvid scan

one problem is that medicare and insurance do not pay for it
it costs between $3500-$5000

you can do like i did
join a study that does the scan for free
i chose a study that will tell me whether its positive or not
then if positive then i get treatment

other studies will do one but you cant get the results
that happened to me in the adni 2 study i was in
but
i signed the waiver saying i understood thats what would happen

so where does this amyvid scan fit in memory evaluations

if you have gone through
a good neurology history and physical
a battery of dementia labs like cbc chemistry profile tsh vitamin b12 eg
a good thorough memory testing
a mri of the brain
then
you might consider an amyvid scan if there is uncertainty of the diagnosis
or
like me you just want as much information as possible
to make lifes decisions

there is a study that will do them for free
its called the ideas study
Imaging Dementia—Evidence for Amyloid Scanning (IDEAS) Study
dont you just love those acronyms

basically
you have to have the right diagnosis
you have to be seen by an approved by the study dementia specialist
then
if they feel you qualify
you go to an approved radiological center that does the amyvid scan
then
you go back to your approved dementia specialist to review
the amyvid scan

the study is sponsored by the alzheimers association   the american
college of radiology networks   the drug companies that make the scan
material   cms the medicare folks

they are trying to determine if the use of the amyvid scan is useful
in the workup of a patient with memory loss
and
whether it makes a difference in the long run

when treatments become available
that answer will probably be definitely its useful

for me it is helpful
since i want to know as much as possible so i can make lifes decisions

now
i will know here probably in the next week if mine is positive or not

i was working towards getting into this ideas study
since i wasnt sure if i would get in the study i am in now
the aducanumab study

since i just had mine this week in that study
i will be able to make those lifes decisions soon

so if you are interested in pursuing getting a free scan done
here are links

a review of the study

a list of clinics or private doctors that are in the study in texas and elsewhere

a list of sites where the scans are being done
its under pet facilites in the same list as the physicians list above

just make sure you understand what the results mean
for your particular case

for me
it gives me a more final picture of whether my diagnosis
is correct or not
if its positive
i continue on my present path
maybe having to make some social decisions to get ready
for whats not too far away
unless of course this aducanumab stuff works

if its negative
well
i will have to rethink a lot of things
do i really have alzheimers disease
do i need medicine at all now

thats why some of you might consider getting in this study
or even paying for it yourself
maybe your diagnosis is wrong or maybe its correct

i wish you the best

the organicgreen doctor

alzheimers news-nothing is 100%

ALZHEIMERS NEWS-NOTHING IS 100%

thats what i tell folks
nothing is 100% in medicine
eg
your strep test is positive
well you might not really have strep
your flu test is positive
well you might not really have the flu

so
in medicine you take that all in into account
as you put the total picture together

then you say yep you got strep or you got the flu
basing it as much on the exam and history as the lab test

so
thats just the way it is in medicine

so as i approached having this final test done yesterday
at the ut southwesterns imaging center
the amyvid pet scan for beta amyloid
i keep all this in mind as i undergo this test

my history like the history of someone with strep throat
all pointing towards strep throat
the strep test if its positive makes it more likely thats whats
going on
maybe 95%+
my history points towards that diagnosis of alzheimers disease
this scan the amyvid is the icing on the cake
like the strep test
most folks would say
looks like a duck walks like a duck quacks like a duck
well it must be a duck

the aducanumab studys official title is this
A Phase 3 Multicenter, Randomized, Double-Blind, Placebo-Controlled, Parallel-Group Study to Evaluate the Efficacy and Safety of Aducanumab (BIIB037) in Subjects With Early Alzheimer's Disease

the one im in is looking at folks with mild cognitive impairment
amnestic type due to alzheimers disease

now as you read what i write about all this
youll see words like
maybe
could be
possibly
probably
not 100%
they think

well
thats just the way medicine is
i can accept that

so i entered yesterday knowing all that
as my wife she and i drove up to dallas for the scan
no
i wasnt anxious
i wasnt nervous
i wasnt sad
i wasnt happy
i did feel lucky and appreciative that i was able to get to the point
where i might know
possibly probably maybe could be but not with 100% surety
that what i have is alzheimers disease

what i decide to do is
put the whole package together
this is the best that we can do
add the amyvid pet scan to the  mix

if its positive for the bad beta amyloid
then
i consider that i have alzheimers disease
so will my doctors
so will a multibillion dollar company who is spending millions
and millions on this test and this study
do
i as an individual
argue with them
no

as we enter the image center

there is the large structure that chihuly did for the university
it is
mesmerizing
as you stand looking up at it
looking over the structure
seeing the water moving at its base
it has a calming effect on you
i always stop even for a moment
look up
take a deep breath
feel a inner peace inside when i do
i feel like the american native indian praying to the sun
it helps get through all this

then into the mouth of the image center i go

they have to start an iv

then they bring in this stuff thats in this heavy
metal box that looks real heavy
i guess to keep the geiger counters from going off
then
the technician pulls out this strangest looking syringe
it too is a metal covered tube that looks real heavy

if if didnt know better i would have second thoughts

what in the heck is in there that they will shoot up
in my arm
well
its a radioactive substance that will bind to the
bad amyloid in the brain
then
highlight it in the brain on an amyvid pet scan of the brain

i watched him do the iv push
expecting a burning feeling
a rush
maybe some glowing as it shoots up my arm
through my subclavian to my heart to my lungs
nope no cough no shortness of breath
back to my heart up my carotids
through that blood brain barrier
slipping through stealth like
zipzappo slazam it attaches itself to all that stuff up there

oh i know its there deep inside i do
that bad beta amyloid

then
i have to sit and watch a chip and jo anne show
for it to all get attached


then
rapidly i walk into the room
with this big doughnut looking machine with a stick
coming out of it that you lay down on

they strap me in
yes
im ready for the ride
lets get this damn thing over with
im ready to move forward with my life
whether its positive or negative for that bad stuff

so
now
we wait
a few days
maybe a couple weeks

no
i am not nervous
i am not anxious
i am just ready to get this final answer
then
move forward from here

so
in my opinion as a patient as a physician
as someone who has read a lot about this test and what it means
here is what i think it means
in my case

if its positive
ie if it looks like the scan on the right
i have a lot of bad beta amyloid up there
as far as i am concerned
i have alzheimers disease definitively as you can be
until one day i have a brain autopsy
now
im not going to wait on that one
right

if positive then i am in the aducanumab study either getting
a placebo which i hope i dont get
or
the read deal aducanumab which will remove the bad beta amyloid
from my brain like in the picture below
on the right all the beta amyloid is gone

if it works i should not get worse
ie i should not progress down
that deep slide into the alzheimers abyss


if its negative
like the one on the left
as far as i am concerned
i got a big reprieve
im throwing off all these shackles i have on and will move forward

keeping in mind
yes
nothing is 100% in medicine
i
can accept that

the organicgreen doctor