my story revisited #165-thanks revisited

MY STORY REVISITED #165-THANKS REVISITED

that is me talking for a few minutes at the last walk to end alzheimers in santa barbara
yes i cried
the picture below in my old blog is me talking at our family reunion it 2014
i dont remember crying when i was talking but a lot of ny relatives cried that day
it was about a year after my younger brother died in the final stages of alzheimers
he died in a hospice center surrounded by family and friends
thats how i want to go when my time comes

i did get to see him a month before he died
i knew when i left that day i would not ever see him again

this blog below i described what all i was doing to slow down the disease
some of the things i dont do anymore
most are the various supplements i took
i was taking around 17+- a day
some i stopped because of side effects like the ashwaghandha which gave me nightmares
the resveratrol didnt show it helped so i stopped it

there are some new studies coming out about multivitamin use in helping 
if those show it may help i might add a multivitamin to my regimen
until those come out i dont plan on adding those

i also was put on aricept or donepezil early on when i was diagnosed
studies show that my help slow down symptoms 

i really didnt envision that my memory would be intact and in the normal range now 8+ years later

i also had forgotten that i was reinterviewed by the austin american statesman about how i was doing
here is the link to that article
it was a follow up to the larger article done 3 years before also linked here

at the time i wrote this blog below i had not had my amyvid pet scan result
i now have had about 4 or 5
i have lost count
one i got just prior to my starting aduhelm or aducanumab study in 2017 i was told it was positive for amyloid
a requirement to get into the study

when i wrote the blog i was waiting to get into the solanezumab study
i wasnt accepted for one study because my memory test was not normal
the other one i wasnt accepted for i wasnt abnormal enough

looking back i am glad i didnt get into these studies since the results are showing the solanezumab isnt really working

the alzheimers blood test is now here
i have had it for the study i am in
it is used now as a screening tests for these alzheimers clinical trials
soon it will be available in private clinics

one drug for blood pressure that was shown in europe to maybe help was nilvadepene
a med not approved for use in the usa

now its shown that controlling your blood pressure with meds like ace inhibitors like lisinopril and its cousins or arb like valsartan or its cousins helps as well as other blood pressure meds

also controlling your cholesterol with meds like statins eg lipitor or atorvastatin or their cousins help 
as does all those healthy things i listed below

this next week i go in for my #26 infusion of aduhelm or aducanumab at ucla
can you say amyloid be gone
__________

11-03-2014
THANKS

thanks to the hundreds of you who read this article from the
austin american statesman yesterday
doctor keeps alzheimers at bay
and
responded with your kind words

why i may have alzheimers
i had a normal mental status evaluation that changed in 3 years to
being abnormal
i personally noticed those changes
my parents and younger brother had alzheimers disease
i carry the apoe4/apoe4 gene that carries up to a 20x increased risk
of getting alzheimers disease
the levels of beta amyloid and tau protein in my spinal fluid are
abnormal
the pet scan for beta amyloid or amyvid will be done soon

for those who asked
here are the studies i am in

the alzheimers disease neuroimaging initiative or adni study
the largest most important alzheimers study ever done
i get lots of blood drawn neuropsych tests mri scans pet scans for
glucose metabolism pet scans for beta amyloid or amyvid and
spinal taps for beta amyloid and tau protein

a study of the new alzheimers blood test which may be 90%
accurate in predicting if you will get alzheimers disease
it probably will be available in 5 years

then hopefully in december
a study of solanezumab an alzheimers vaccine infusion that may
remove beta amyloid from the brain


first
i am not doing anything different really than thousands
of americans who volunteer to help other folks every day
i know at the habitat builds and the meals on wheels there are
those dedicated folks who are always there doing their part

there are many ways to volunteer
even helping an older neighbor or friend
a disabled one
or
someone temporarily in need

do volunteer
i can speak from experience now after 4 years
the one that benefits the most from volunteering
is that person in the mirror
you

what i am doing to ward off alzheimers disease is not some
secret treatment
its been researched and documented and written about
for years
its mainstream medicine

now one thing to remember is that
in my opinion this doesnt really stop alzheimers disease
once it get rolling
its going to win eventually
but
it slows it down a lot and hopefully makes the symptoms
that you see in people less severe
kinda like
a snowball going down a hill that hits against obstructions
along the way to slow it down
but
eventually it will get to the bottom of the hill
but
it will not be as big

i do think that if a person can start all this preventative stuff
when they are young
even when they are babies and infants and toddlers and
little kiddos and teenagers and young adults
they can maybe prevent themselves from getting alzheimers disease
or
slow it down so much that they will die from something else
when they get real old

eat a heart healthy diet or mediterranean diet
or
if you  are so inclined a gluten free diet sorry i cant do that one
or be a vegetarian or vegan

dont do excesses in your life like eat too much gain weight
drink too much smoke at all use drugs

exercise

get an adequate sleep each day
this one is turning out to be important

control diabetes blood pressure cholesterol

be happy stay mentally active stay socially active

do this and we are talking about a lot of disease prevention
besides alzheimers disease

i have also got a lot of questions about this vitamin and supplement
thing im doing

if you arent going to do this stuff above then dont worry about the
supplement and vitamin thing

i first read the article on the research that was done
here is the full article
then
i discussed this with my primary care doctor and my neurologist
then i had screening labs done looking for problems

i found a low vit d and low b12 which i wasnt expecting
and am taking replacements for them
had my levels not been low i wouldnt have taken those supplements

my homocysteine level was quite elevated
it may be associated with an increased risk of alzheimers disease
its not definitely proven but i as i have said before i dont have
time to wait for it to be proven
so im taking folate  b12 vit b6 each day to lower that number

since i know that i have abnormal levels of beta amyloid in my
spinal fluid and will soon know if my amyloid pet scan is positive
i have elected to take stuff that may lower beta amyloid levels

remember this isnt proven these supplements do this yet
but in animal studies they do

one resveratrol was used in a big study whose results will be out
later this year or next year which will say yes or now if this works
this is the stuff from grapes
it takes tons of grapes to get enough for a daily dose so  thats why
its been put in a pill
if its disproved with this study i will probably stop taking it

some of the supplements i cant tolerate like melatonin
and ashwaganda which may lower beta amyloid and help
some with sleep
i got these god awful disturbing dreams with it

there are 7 things to do that we all should be doing anyway
like those mentioned earlier

so i didnt just start taking this stuff without looking at each
one individually as to whether it fit my circumstance
i look at the side effects and interactions with my medications
like my blood pressure medication or cholesterol medication

if i could access nilvadipine for my blood pressure i would
change to that drug
see last fridays blog

plus
remember there are not many options right now for me
except to do these things
if im wrong this may help then i havent lost much
if im right this may help then ive done myself and my family
some good

please do not just start taking this stuff without looking
at each one closely discussing it with your medical providers
remember these are as much medicines as those prescriptions
you are taking

and also remember this is not a cure for alzheimers disease
its like aricept (donepezil) it slows down the symptoms
but probably doesnt stop the disease

so what do i notice
i feel better
i feel more alert
i have gained more sleep
i dont get leg cramps like i did ( a side effect from the aricept)
i dont feel as tired later in the day
i have less morning nausea

so something is helping in this regimen
im not sure what it is
but its enough i plan to keep on taking it

so again i say
thanks for the interest
dont worry if a cure comes i will be overposting about it
_________
as i sit here i wonder what i will be like in 8 years
i would be 80
i guess if im still writing my blog then that would mean that all that healthy stuff worked and that the aduhelm or aducanumab slowed down the decline some or some other drug that comes along that treats this disease

if on 1-26-2031 i write a blog then ill be happy

the organicgreen doctor