my story revisited #160-i came i saw i conquered

MY STORY REVISITED #160-I CAME I SAW I CONQUERED

i vinied ividied and now im viciing
for you non latin folks
thats a latin phrase for i came i saw i conquered
well
ive not conquered but im working on it

i presently have had about 24 infusions of biogens drug aduhelm that removes the measurable amyloid plaque from my brain
my pet scan next summer may not have any amyloid show up
if it does it will only be a small amount

the effect it has will be reported out in about 18 months
24+18 means i will have had 42 monthly infusions when this study ends

its expected that the study will show that the amyloid is gone on amyloid pet scans and that the slowing memory decline in those who are in the study will be about 22%

slowing of memory decline is quite acceptable in the alzheimers world

yesterday biogen and eisai reported at a large alzheimers conference its results on its drug lecanemab a cousin to my drug aduhelm
lecanemab attacks amyloid similarly but differently than aduhelm in that it attacks it earlier in the disease process

this study showed it slowed memory decline by 27% and had fewer side effects than aduhelm

its expected the fda will approve its use in january 2023
it will be up to medicare and medicaid and insurance companies to approve payment for its use

they wouldnt approve aduhelm but its expected they will approve lecanemabs use in mild cognitive impairment due to alzheimers disease ie early in the disease process
a good reason to get diagnosed early

i will have a decision to make
stay with aduhelm or go with lecanemab

i will probably stay with aduhelm to finish the study in 2024 then whichever one works best ill go with it

nice to have a choice huh

there are two others that may get approved also next year 
so there may be 4 choices

we are not talking about a cure here
we are talking about time
time with your wife your kids your friends your grandkids
precious times
will it give us days weeks months or years
im hoping for that last one
years

i also mentioned the 36 point plan 
i started doing all of them but have now dropped some off
i control my blood pressure my cholesterol my weight  i exercise i get adequate sleep thanks to afternoon naps i am active socially physically mentally i am not depressed or anxious

based on abnormal labs i take folic acid vitamin b12 vitamin d3 i take a baby aspirin a day especially since i have ocular migraines which can be a tia variant i take choline i take probiotics
all those on are on the 36 point plan so im doing more than half of what he recommends

i tried to get in the a4 study using solanezumab but was turned down since i was on aricept or donepezil and had memory loss issues

i think this was the visit below where they laid out my moca test scores so i could see where i started then where my memory dropped then started rising again

my last several moca memory tests have been normal ie i get a 30 out of 30

this is about when i started to watch the research on aducanumab or aduhelm
it would be about 2-3 years later when i got into the study im in now where i got the 18 months of placebo followed by now about 24 month infusions of the real drug

there was a lot of hope in that visit 8 years ago
__________
10-09-2014
VINI VIDI VICI
thats what i did yesterday

as i was driving on i35 to dallas yesterday
i looked over to the left
there in a break in the clouds was the eclipse of the moon
it followed me for miles as i drove along
it was hard to take my eyes off it
then as the dawn broke
there to the right from the east
was the bright large orange sun peaking through
a break in the clouds

a sign is what i thought both of these things were

yesterday i underwent the annual reevaluation for
the adni study that im in at ut southwestern

yesterday i got a message from the alzheimers association
where you could click on a link to see where the money
goes when you donate to the walk to end alzheimers

there it was the adni study was prominent on the list
so i want to personally thank those of you who have
donated to the walks this year and in the past
i would not be able to be in this study without your support

i was asked a ton of questions
then i was sucked of a large quantity of blood
i told her she should have just pulled off a pint of blood
instead of putting a little bit in all those tubes
im sure there were 20 of them

then
off to the torture test the neuropsych test
this one i have down good
but
i still have the same problems in the same areas each
time i take it
i do notice ive taken so many of these that i already
know the answers

then after a brief pause where i took the video below
i then went to my neurology appointment to see the
neurologists

the bad news is i dont qualify for the A4 study since i have
memory issues and since i am on aricept  (donepezil)
the good news is that i may qualify for a new study
for people in my category that starts up in december
i will go up and do the interview and testing for this
study
i think if im correct that i will get the beta amyloid scan
that i am wanting

then
if accepted i will be put into either the treatment group
or the placebo group

the treatment group will be receiving monthly infusions
of the iv alzheimers vaccine solanezumab which should
bind the bad stuff beta amyloid from the brain
and if works slow things down or prevent the advancement
of the disease
at least for the 36 months of the study
if i get the placebo i will just get water

no placebo please

this is the biggest thing happening right now in the battle
against this disease
whether this approach will work we will know over the next
5 years since there are a lot of folks being treated with
this solanezumab

more when it happens

then i discussed at length the possibility of using the
36 point treatment that was discussed in the
recent article on research done at ucla

tomorrow i will go into more detail on this
i start the regimen this morning

if it helps it will show up on these neuropsych test
and i will know before anyone else knows

i do realize now that my mom dad and younger brother must
have noticed things long before anyone else did
research is showing thats the case
im living it i dont need research on that one

i also went over all my neuropsych test for the last 4 years
and they are all stable
but i personally feel some slippage has occurred
i notice it frequently

then when i had my break before my neurology appointment
i wondered the campus looking at all the new landscape they
were putting in at the new hospital addition there

in the back of the clinic i go to there was this long row
of purple native plants that looked like indigo spires or
similar plant
i did this short video of all the monarchs that were there
mesmerizing it was
like i was meditating

i think its a sign dont you

_________
the video we did of the monarchs all over those indigo spire wildflowers has been lost over time
the plants were a long row of probably 50 plants all covered with what seemed like hundreds of monarchs
i saw it as a sign that day
a sign
for today

are we almost there
i hope so

dear medicare medicaid private insurances
dont make those of us with alzheimers disease
your stepchild

what does that mean
 Something that does not receive appropriate care, respect, or attention

the organicgreen doctor