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

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-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-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

alzheimers news-you make the difference

ALZHEIMERS NEWS-YOU MAKE THE DIFFERENCE



you
yes you
will make the difference
as to whether we find a cure for alzheimers

we may be within 5 years of having a treatment
or
if we are lucky
a cure for alzheimers disease

how so

its your and my donations over the years at the alzheimers walks
that have helped fund
-influencing congress to give us more money for research
-more research locally and nationally
-caregiver education and support which is so important

i am about to enter a new study that is partially funded from the national
alzheimers group from your and my and others donations

you and i and others make a difference
when there is a donation made to these organizations

eg
i will soon know if i probably have alzheimers disease
thanks to a study called the ideas study
which will allow medicare pay for the amyvid pet scan
which highlights the bad beta amyloid in the brain
the hallmark of alzheimers disease
partially funded by your and my and others donations

all over the us and specifically in central texas
family members caregivers those at risk medical personal
go to classes to learn about alzheimers disease and other dementias
funded completely by your and my and others donations

research on alzheimers disease at the local state level
is partially funded by your and my and others donations

i guess
what i am trying to say here
is that we cant fight this disease
without the publics support
the government cant and wont do it all for us

so
we need your help
help us
support your local walks

now here in central texas i have chosen to support the
alzheimers texas walks
since all the funding stays in state
-to support the local chapter in all it does
-to support local research



lets put a boot to alzheimers
www.txalz.org/walk

donate and or join my team organicgreendoctor
for the alzheimers texas williamson county walk on september 24th
in georgetown texas

donate and or join our team austin regional clinic
for the alzheimers texas travis county walk on october 8th
in austin texas

to join the team you will need to register first
to only donate just hit the donate button

the organicgreen doctor

alzheimers news-any ideas

ALZHEIMERS NEWS-ANY IDEAS



recently i contacted the neurologist i see at university of texas southwestern
i said
im ready
i want my amyvid pet scan
why
the amyvid pet scan will show if i have accumulated in my brain
any beta amyloid
the bad stuff seen in alzheimers disease

if it is negative
i dont have alzheimers disease
i plan to stop my aricept (donepezil)
and
move happily forward

if it is positive
well thats what i expect it to be
based on
my family history of alzheimers
my abnormal memory tests
although they are back to normal
my abnormal spinal fluids level of beta amyloid
my positive apoe4 apoe4 gene

im better
maybe from the aricept (donepezil)
maybe from my healthy living
then
i will move forward with a more aggressive plan for
the near future
ie
my window just got smaller

so
as i called the radiology center to schedule the amyvid scan
they said could you wait
we will call you back

then
i got a phone call
the alzheimers disease center at the university of texas southwestern
is about to get approval in the next month or two
to start the
ideas study
sponsored by medicare the alzheimers association the american college
of radiology and the two drug companies that make the scan stuff they
shut up your veins to highlight the bad beta amyoid

so
for right now i am on hold
waiting to see if the study gets going
if it doesnt
i will do it privately before the year is up

i like doing it as part of the study since others can benefit
from my results
plus
it will save me $5,000

so the ideas study 
a $100 million dollar study
will pay for about 20,000 scans
referring physicians have to be study certified
neurologists psychiatrists gerontologists
the centers that do it are usually at major research centers

my neurologist will be a participant
the alzheimers center at utsw will be a participate
now im just waiting

the purpose of the study is to see if using the amyvid pet scan
in clinical practice can be helpful in managing someones care

eg
my scan will be used to decide if i continue aricept (donepezil)
it has side effects
if the scan is positive i need to stay on it
if the scan is negative i can stop it

my older brother may have alzheimers disease
he got better like i did
on aricept and healthy living
does he have alzheimers
the scan would more definitively answer that question

my younger brother early on when he had symptoms
does he have alzheimers or is it something else
a scan might have told the family early on
yes he does
plans could be made

of course
whatcha gonna do about if its positive
if you have it

well
do all those healthy thing we all should be doing
take aricept (donepezil)
i know the side effects like leg cramps are a pain in the
calf

then
thanks for all the emails and messages about the article that was
on the news feeds about the aducanamab study
where people got better taking it
their amyvid pet scans showed improvement
when they took it

thats the study i want to also get in
it also soon will be starting up at the alzheimers disease center
at utsw
click on the link theres a video story on my wife and me

its
a new potentially life changing drug treatment for those of us
who have or soon will have
alzheimers disease

help us in the fight
for a cure and treatment
for education about alzheimers disease



lets put a boot to alzheimers
www.txalz.org/walk

donate and or join my team organicgreendoctor
for the alzheimers texas williamson county walk on september 24th
in georgetown texas

donate and or join our team austin regional clinic
for the alzheimers texas travis county walk on october 8th
in austin texas

to join the team you will need to register first
to only donate just hit the donate button

the organicgreen doctor