alzheimers news-update and more

ALZHEIMERS NEWS-UPDATE AND MORE

i am now 8 days post infusion
having received the first aducanumab infusion
well i might have got the placebo instead
eventually ill find out which i got

for those who dont know what aducanumab is
its an antibody against the bad beta amyloid
that is thought to be the cause of alzheimers disease
at least based on the amyloid theory

the antibody binds the amyloid and removes it from the brain
if it works the scans for the amyloid is clear
the memory gets better

the two symptoms i have noticed so far
are
a low grade headache that i occasionally have to take acetaminophen
to relieve
fatigue that worsens as the day goes on
both
i can live with

now i have a low grade iritis an inflammation of the iris of the
eye
that also can cause these symptoms
i control it with daily steroid eye drops
however
i dont think this is a flare of my iritis

heres hoping my headaches and fatigue continue
it could be that i am getting the real medicine and not
the placebo
i sure hope so
i dont want to lose 18 months of treatment until
all of us in the study get offered the read deal aducanumab


i have been following
karen garner
in her blog called
missing jim confessions of an alzheimers wife

jim died over a year ago
she occasionally blogs to let us know how she is doing

i suggest you click on the above link
to get the feel of what its like to deal with a loved one
with this disease
even a year after their death

i am afraid folks that this diseases effects on caregivers
and loved ones
never ever go away
her blog still oozes with sadness
she is one of thousands so affected


then
last week
now i have thought about this a lot
since i was diagnosed
it was even a segment on the alzheimers movie still alice

someone with the disease
reaching that point
i sitting here today can see where that point is
but
like in the movie still alice
when that point arrives
you are usually to gone upstairs
to carry it through

here is the link to article on how a husband of an alzheimers patient
recognized when she reached that point

was is he guilty

i say yes and no


then
you know when someones heart fails to work anymore
its called heart failure

when someones kidneys quit working
its called kidney failure
now
when someones alzheimers disease advances
its called brain failure

thats what alzheimers disease is and leads to

brain failure

the organicgreen doctor

top questions you ask me

TOP QUESTIONS YOU ASKED ME
i am always asked a lot of questions about alzheimers
dementia memory loss
and
of course lots of gardening questions and rainwater collection ones
but
mostly today ill address the top three im asked about memory

should i be tested is asked at every presentation i do
i answer it this way

if you are having memory issues
you should seek an evaluation
there are a lot of things that causes memory issues that are treatable
like low thyroid low b12 abnormal electrolytes liver disease
kidney disease depression anxiety stress sleep disturbances
medication abuse of drugs and alcohol poor control of diabetes
blood pressure cholesterol
just to name a few

fix these and your memory might improve

before you go to the visit
if the memory is significant have a family member do
an online questionnaire on you like this one
fill it out and print it to take with you

also write out what memory issues you are having
take them in with you
take someone with you since many providers like to
interview family members also

make the appointment just for memory and nothing else

during the evaluation you should be asked lots of questions
labs should be done
a memory test should be done

if you have an in office one that doesnt take 20 minutes or so
to do then you did not have a good one
they are called mmse or moca tests
they may do one called a clock test or minicog as a quick screen
but on that one you have to be more advanced to flunk it

you may need a neuropsych test and an mri

here is the link to a pamphlet that is a gold standard
for evaluation of memory loss for providers to follow
the link is at the bottom of that page to the pdf file

it soon will be available in a quicker reduced form
you can look at this online pdf file to follow your workup
to make sure a complete evaluation is done

dont get ignored if you do go somewhere else for the evaluation

should i have genetic tests done
i would say no if you are not ready to accept what you find
if you are not ready physically mentally emotionally and
financially to get bad news

if a positive genetic test gets in your medical record
you will not get life insurance disability insurance
long term insurance possibly professional insurance like
malpractice insurance and in some cases health insurance
which thank goodness for obamacare most people could get
it even with a diagnosis

i have had relatives and friends get genetic tests done
that show the apoe4 double gene
if its positive and its in your record you will have problems
as above

the genes for alzheimers are rare
less than 1%
if its heavily in your family you could have it
if you have the gene you will get the disease

the apoe4 gene double version is the next bad one to have
your odds are increased 10-20 times you will get alzheimers
but it doesnt mean you will
even then it can be hard to digest and accept your risk

that said
i would want to know and i did want to know
so i got tested
granted this was after already being identified as having
memory loss
and
labeled as amnestic mild cognitive impairment
and
having been shown to have abnormal levels of beta amyloid
and tau in my spinal fluid

so as part of a total workup i had it done
probably without symptoms i would not
but
lucky for me i had all of my ducks in a row re insurances
when my diagnosis was made

that said
knowing you have this increased risk sure makes you more
aggressive in taking care of you health
which i think determines how this apoe4 gene will affect
your memory loss

how are you doing
i must say that compared to 4 years ago when i was diagnosed
and
took all my tests and did all those memory tests and
neuropsych tests
i am much better as evidenced by my scores now on those tests
and
based on what i feel and notice myself

i feel like that fog that was hoovering over me for a couple
of years seems lifted some

why
once all this happened i got very aggressive with my health
my blood pressure was always borderline high
it would come and go
so i gave in and got on a blood pressure medicine that keeps
it normal all the time now

my cholesterol was under pretty good control
but i have aggressively got my levels to those that someone
with heart disease or increased risk for heart disease should
have theirs at
specifically my ldl is less than 100 and my triglycerides are less than 100

i stay very active physically mentally socially as much probably
as when i was in practice if not more

i take aricept which could be part of the reason why im better

stop it and i will find out but im not willing to do that though
the problem with aricept is that it interferes with my sleep
i only get 5 hours a night
but
i compensate that with an afternoon nap
and
i now take a nightly herbal medicine that seems to get me back
my 1-2 hours i am loosing to the aricept
usually
but i do most of the time feel rested

that said the aricept causes a lack of energy and tiredness that
usually hits me in the afternoon
hopefully i dont demonstrate that tomorrow afternoon at the movie

luckily usually i am napping and have done most of what i
like to do in the morning

i take b12 supplements and vitamin d3 supplements since both of
these were low when i had blood tests for them

i eat a mostly vegetarian diet about 90%
i eat a morning egg and toast dried nuts and fruits
i do eat meat but its lean meat like turkey and range fed beef
some occasional chicken
i follow mostly a mediterranean diet
but if i go out to eat i eat what i want too

i am not depressed i dont feel stressed i feel happy and contented
i dont get angry it seems

then
i have been following the protocol from the
reversal of cognitive decline study from dr bredesen from ucla
most of which i was doing already

putting all that together
the answer is
i think i am doing better


still alice
the special showing of still alice  with the alzheimers association at 155pm which
will have a panel that includes me and two others to answer your questions
afterwards
is sold out

it is showing several other times that day and at other locations in austin
for you to see it
it is a must see movie for i think everyone
even young folks since i think they need to be thinking about this

for those who got tickets to the q&a session ill see you there

the organicgreen doctor

hope for the future

HOPE FOR THE FUTURE

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

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

hope is out there but its way out there

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

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

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

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


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


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

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


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

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

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

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


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


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

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

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

some hope for the future

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


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

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

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

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


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

the organicgreen doctor

why so early

WHY SO EARLY
it can hit early
this alzheimers disease


if you watch the new movie
still alice
thats what its about
alzheimers disease hitting at too young of an age
way too young


my younger brother was stricken early
like still alice
he was still joe

but like still alice
he looked so healthy and alert
you really didnt notice it unless you were really around
him a lot
then over time it all got worse

i watched a video recently of my parents 50th anniversary
from the late 1980s
i looked closely at my mom and dad
dad died just a few years later he was probably stricken even then
then
my mom was my age i am now
she was just 10 years away
i looked at her closely for signs in the video
for the disease was rampant as she smiled
and
as she seized the moment
then
still joe
was there at 40 years old
laughing and joking pulling pranks on me
having a good time
it was sad to think that at that moment in time
he was just about 10 years away also
the disease had been working on him for several years now
then
i looked at my older brother
handing my parents their 50th anniversary plaque
thinking as i watched all of us
he also was affected even then
he didnt know it

then i looked at myself
wow it was just starting on me that year
i just didnt know it either

it was like with the movie
hard to believe  still joe had alzheimers
he looked so healthy
look hes driving was working
doing a lot of the things he was doing before he was diagnosed
but
like alice
he got worse

tragic it is when it strikes so young
its not fair
cant life just let them live another 10 years or so
to finish up their productive years
but
no life is not fair is it
early onset alzheimers disease

i feel like if i do have alzheimers disease that i am lucky
i got to finish my career
enjoy some of my retirement
have a chance to squeeze all out of each day
something
i wouldnt be able to do if i was
still alice or still joe

when it strikes early like this
dementia
its more likely due to alzheimers disease
but
it also could be a disease called frontotemporal dementia
something happens to the frontal and temporal parts of the
brain
they shrink
and that part of the brain its function quits working right
they loose inhibitions
then they dont live long just a few years and they are gone

then

theres dementia of lewy bodies
probably the worst to have
it comes quick and can be and is i guess the worst to have
i call it alzheimers disease on steroids
paranoia hallucinations sometimes violent behavior
meds sometimes dont help
it seems when family members talk about their love ones
they seem so despondent
its the bad one
deposits form in the brain called lewy bodies thus its name

but
most will be alzheimers disease though

none are good ones

leaving friends and families all saying
they are so young
why so early


i hope that everyone will go see still alice when it
appears in your area
you if you have not had to experience what its like
on
the person with the disease
and
their families
then you need to feel it and see it
then
you will see why we all who are affected are so passionate
about
finding treatment
and
a cure

as soon as the special showing by the alzheimers association
link for buying tickets is available for this weekend
ill post it here and on facebook

come see the movie this saturday at 100pm
at the alamo drafthouse south lamar in austin
stay afterwards
ask me a question

see the movie
bring tissues
feel it
like those affected do

the organicgreen doctor