alzheimers news-my best ever 70th birthday presents

ALZHEIMERS NEWS-MY BEST EVER 70TH BIRTHDAY PRESENTS

i told my wife she no big presents or big event for my upcoming 70th birthday

well yesterday a few weeks before my 70th birthday i received the two best presents i could ever get

these presents are now my two top priorities in my life going forward

as those who read this blog know i have mild cognitive impairment due to alzheimers disease
i take the alzheimers drug aricept (donepezil) which slows the symptoms down
its been 9+ years since i was diagnosed and started the aricept

i also have been aggressive with taking care of my health that combined with the aricept is probably the reason i am still here able to write this blog

about 3 years ago i added another treatment to my regimen
after months of reviewing all the potential treatment studies i settled on the biogen aducanumab study which uses aducanumab monthly infusions to remove the accumulated amyoid plaques from the brain hoping by doing this to make the disease process slow down


in preliminary studies folks about 100 of them took it for a year
they had all the measurable amyloid removed from the brain as shown on amyvid pet scans
they also noticed a decrease in memory decline
thus
the phase 3 treatment studies were started
there were 3 of them started using different doses including placebo
eventually 3 years ago
i was accepted after several step wise evaluations that took several months ending with my positive amyvid pet scan for amyloid
thats the red stuff in the amyvid scan above
i want my like the one on the right with all the red stuff ie amyloid removed

i received my firsts infusion on my birthday in 2017
here is my blog about that day
and
the next days blog about the experience
little did i know that day that i wouldnt have 48 more infusions
i only got 25 infusions

i then did 18 months of monthly infusions of aducanumab not knowing if i got the placebo or the real drug
then i did 7 months of monthly infusions of the real drug
then
the biogen aducanumab study was abruptly stopped
it may not reach its futility end point they said
oh by the way
sucks for you you got the placebo for 18 months
but
i did get the real drug aducanumab for 7 months

knowing that had i done at least 7 months means that much of the measurable amyloid was removed
so my amyvid pet scan had it been done would be much less positive
ie it would still have some red left on the amyvid pet scan

bummed like hell i was along with the other 3000+ folks throughout the world on this drug

then
this winter biogen released more data that showed that the folks who got the higher dose for at least 14 months had most of the amyloid removed visible on the amyvid pet scans plus their memory tests were better plus their activities of daily living were better

they await fda approval now to restart the studies and also await fda approval for this to go to market

well
well
yesterday was the day my birthday presents day arrived

starting in march the fda has approved the biogen folks to restart the treatment studies on 2400 folks

if you were in those 3 studies yes thats me you will be offered to receive the monthly infusions for at least 100 weeks

so for me i would restart the infusions of the higher dose aducanuma hopefully as soon as next month at ucla and do so for at least almost 2 years
if it seems to be doing what its suppose to be doing the amyloid in my brain over that time period at least the measurable amyloid on the amyvid pet scan will be gone
the amount of tau protein thats the second bad protein of alzheimers will also decrease in that time period
any memory decline or activities of daily living (adl) decline will be slowed during that time
then
if it works it will be on the market if the fda approves it
then
i will continue it long term either in research or at my neurologists office

this the reason its important is it may be the only chance i will ever have to receive a new drug that will truly help

the other potential treatment stuff is too far out to help me

yes
i guessed right about 5 years ago

thats a big ole birthday present for me next month
i dont need anymore presents please
except for this other one below


then
we got the word yesterday that a final approval was done to ok the live donor of a kidney for mr hudson
i got to meet her
yes i cried
its interesting she has no blood kin to mr hudson but she is the best match of those who volunteered to donate their kidney
the other donors are still being processed since if something goes awry there are backups

mr h needs to gain about 2/3 of a lb to be ready
then
they will wait until his kidney functions worsen just short of him being symptomatic from his kidney failure
so
now we just wait but we are all ready

yes
i got the two best ever birthday presents yesterday that i could ever get or have ever gotten

you could say
im having a very happy birthday already this year

the organicgreen doctor