alzheimers news-i got a 10

ALZHEIMERS NEWS-I GOT A 10

this week i got my 10th infusion of the
biogen aducanumab
well i think im getting the real stuff
but
i might be getting the placebo

im thinking the real stuff

our last trip took over 3 hours to get there
the last 2 hours was spent stuck a lot in traffic

this time we left at 5am
we mostly avoided the bad traffic on the 405
think austins 35 at its absolutely worse
thats the 405 during rush hour
maybe worse

we made it in over 2 hours
we arrived 2 hours or so before our appointment
which was ok with us
we decided we would rather zoom through traffic
than be stuck in that not moving traffic

we just went on a long hike around the campus
the first we have done
by the time im finished with this study
if i am ever finished
since
many times they will extend the study more long term
we will know the campus and the area real well

we also save our weekend grocery shopping
since there is a large grocery chain just
across the street from ucla
for those in texas think maybe nicer than
a real nice heb

so we shopped then took a lengthy hike
then on to the infusion center
it seems that every time i go now
things just get more streamlined

i arrive by 1000 am and i am out of there before 100pm

i am now at the point of the infusions where
i just get checked in
see the research doctor
wait on the infusion to be processed
they do the iv and hook it up
it runs in over a hour then they flush the iv with saline
for 15 minutes then im out of there
no labs or other testing
thats the way it will usually be from now on
usually
except for the annual visit coming up in march
and
the 6 month visits

in september 2018 i will have the final visit for the
first phase of this study
ill get the last infusion of the mystery stuff
is it real or not
then
if i opt to i can do another 42  months of infusions
of
the real guarantee you gonna get the real stuff infusions
i want those for sure

so
i see in the future this little dim light thats aflickering
i see the hope light way out there
ill know for sure im getting the real stuff

one thing i have noticed after this infusion on tuesday
is a persistent headache that is requiring acetaminophen
twice a day to control

remember
headache is a good thing
it means i might be getting the real stuff

being a apoe 4/apoe4 genotype i am more likely to have
small micro bleeds where the bad ass beta amyloid is removed
which is the usual cause of the headaches

heres hoping thats why

also if im getting the real stuff
in late 2018 when they do my amyvid pet scan
the pet scan for the bad ass beta amyoid
remember it had to be positive to get in this study
if i am getting the higher dose stuff
then my scan will be negative or almost negative
for the bad ass beta amyloid

of course like i have written before
i will never get to know if i was getting the real stuff
aducanumab the first 18 months of the study
and
i will never get to see any of my amyvid pet scan results

i can live with that
as
long as this stuff slows it down

as a reward on tuesday
we elected to leisurely drive the pacific coast highway
thats the hwy one from los angeles back to santa  barbara
it goes through the pacific palisades then malibu
then through mostly almost uninhabited areas

i found it relaxing as my wife she drove
so i could do all the sightseeing without running off the road

rank this visit
a 10 for sure

the organicgreen doctor

alzheimers news-what to do

ALZHEIMERS NEWS-WHAT TO DO

last week i spoke for about 40 minutes on clinical studies
in alzheimers disease
i reviewed the theory that beta amyloid accumulates forming plaques
then tau protein unravels and forms tangles
both cause brain cell death

i reviewed the adni 2 study i was in for 5 years
a series of diagnostic tests
four that are usually done to work up memory loss
history and exam  labs  memory testing   mri of the brain
the others arent covered by insurance
genetic tests  
spinal tap for amyloid and tau
glucose metabolism pet scan
amyvid pet scan for beta amyloid
then
i reviewed new drug treatments for alzheimers that are experimental
the alzheimers vaccines like my aducanumab study that i am in
the bace inhibitor pills that stop beta amyloid production
the leukemia drug that slows down parkinsons and may slow
down alzheimers

then i reviewed the healthy things that one can do to slow it down

then i answered questions for 30 minutes running over into the break time
but
folks kept asking questions
afterwards i answered question for even longer
folks want answers
sometimes there arent any yet

should i get tested
yes if you have memory issues

should i get genetic tests
no if you dont understand what they mean
especially the apoe 4 gene thats in the 23 and me tests for genetic diseases
its associated with late onset alzheimers disease
if you get the gene it doesnt mean you will get the disease
you are at a higher risk of getting alzheimers though
how you live your life health wise and environmental factors determine
whether it gets you

so what do i do if its in my family
for now there is no real treatment
but we are close i said

i would do these things
do all the healthy things on this slide
do the  mind diet or the mediterranean diet
consider if you are high risk or if you have memory issues
the reversal of cognitive decline protocol from ucla
its the one i am on

most of it is on that slide above
the rest are supplements
and
checking levels of things like b12
thyroid levels hormone levels vitamin d3 homocsyteine etc
correcting them if they are abnormal

the results from their studies are promising to slow down the
mental decline
but
i doubt that it totally stops the disease
it just slows it down
but
what if you could slow it down for 5 years
thats a lot of time in alzheimers years
enough
to see a love one graduate or get married or have a baby

i attribute my doing well to this regimen
and
to taking aricept (donepezil)

dont just do nothing
most of what you can do is in
your hands
and
your mouth
and
your legs

get going
now

thats what you do to slow this down

the organicgreen doctor

alzheimers news-dont wait too long

ALZHEIMERS NEWS-DONT WAIT TOO LONG

as a person advances with alzheimers disease
they can become a handful to deal with
a single caregiver can have a difficult time
doing it by themselves
it make take a village to care for them both
many caregivers develop poor health and get burned out

today i will be giving a talk at the alzheimers symposium
on clinical trials and my story with alzheimers
every time i give these talks
some caregiver will come up to me and ask
i dont know what to do
my loved one has advanced
so that i cant leave them along anymore
i have no family around
they all live miles away states away
i wish that i would have moved back to where our
relatives are and our kids are

i wished that i would have done it sooner
when my loved one could help me make all these
decisions

yes
i agree it would have been good to move
but since you didnt
if it was me i said knowing how i feel about things
i would do it even now before things gets worse

i am sure i will get a question like this today

now i am as sure as a person can be that i have
the early stages of alzheimers disease
the official diagnosis
is
mild cognitive impairment due to alzheimers disease

i am doing all i can to slow things down
living healthy
taking aricept (donepezil)
being in a new treatment trial the aducanumab study that has great
promise to slow things down or if we are all lucky
stop the disease
i realize that after doing this study that it may not work
you just dont know what will happen when the larger studies
get done on these promising drugs

so
if 2-5 years i could be progressed like i would had i not got treatment
or
if this stuff works i will be better or heck ill take where i am now
i dont know
so
as my wife she and i look into the future
there is no crystal ball to find answers

i just know
if i stay here at the country n we will both enjoy every day we live
here and probably wont regret staying
however
if i worsen
living out here away from support mainly for my wife she
she will probably get isolated and overwhelmed like all those
spouses that come up and ask me what to do

i decided that we are not going to let that happen to us

so
we are looking to sell our lovely peaceful country n place
with it being just like we envisioned 15 years ago
to move to the next stage of our lives
we plan to never look back
but
will look forward to the next chapter in our lives

my wife shes family all live in southern california
sisters mother our two sons our niece and most important
our granddaughter
when the time comes
there will be folks around that can give her support
when she needs it
now lucky we have long term care insurance to cover costs
but
its that emotional care for her thats the most important

also
her mom if you know this spunk of energy
is in early early 80s
as i told her
you will never regret spending the last years of her life
with your mom

now
we have been thinking and planning all this for months
not rushing into the decision
we spent several weeks there looking at places
looking at what will keep me especially busy
so
i have found the same things i do here
volunteering at meals on wheels and habitat for humanity
and school and youth gardens and the alzheimers movement
i will have two large garden plots in community gardens
i will continue to give my alzheimers talks like the one i will
do in a few hours from now
answering questions and hopefully giving them much needed
answers
i will also continue doing this blog like i am doing now
on the same topics

so
please continue to join us on our new life adventure

our country n place will be going on the market soon
probably next week
for some lucky person to have and enjoy what we have
i will post the link when it does

one of the biggest things we will miss
something we cant duplicate in southern california
is
drinking rainwater
it will be missed
as
will all of our friends we have made over the years

now
i will be commuting back to dallas every month for my
infusions for the next 18 months to 4.5 years
so
we will be around this area off and on for months to come

thanks
yes we will miss this place
but
we are at peace with our decision



the alzheimers texas symposium in temple starts today
at the mayborn center
it starts at 900 am with my talk
there will be 3 others after that
there will be lunch provided
walk ups are usually welcomed

thanks for all the support the last 6 years

the organicgreen doctor