the headlines read this one hurts
yes it did
it was felt by the patients their families the doctors the researchers the investors those of you who will be affected
this drug aducanumab was the big hope
the one we were all waiting for
this is the alzheimers graph of someone like me with late onset alzheimers
if you look at the 45 year point on the lower part of the graph
go straight up to the first s shaped line that reads ab amyloid
thats when amyloid first gets deposited in the brain
so for me that was when i was 45
that was the point when removing the amyloid should have been started
not today 20+ years later
for the aducanumab to really been effective it would have needed to be started when i was 45
removing the amyloid as it formed so no destruction of brain cells were started
so the amyloid plaques wouldnt form
it was started in me when i was 65
too late to do its job
i compare this to using statin drugs like crestor lipitor zocar lovastatin early in ones life like when you are in your 40s so that you wont have a heart attack or stroke when you are 65
so it is with removing amyloid from the brain
now look back at the graph
see the next s line that is tau protein
it is a protein that is in the cells that when they get damaged by the amyloid they unwind and get released forming tau tangles that further damages the brain
amyloid starts the process years before
tau finishes the job
so without amyloid accumulating tau tangles may not happen
so for all this to work we have to identify folks like me when we are in our mid 40s
then
start a drug like aducanumab then not 20+ years later
its like using lipitor when the arteries to the heart or brain are all clogged with cholesterol
its not going to work
thats what i think happened with the aducanumab infusions
yes now they are trying to identify folks years earlier and start these drugs
those studies are starting up or ongoing now
so now back to me
my orignal amyvid pet scan done two years ago was positive for all that amyloid accumulation in the brain
i took 27 infusions of the aducanumab so that my last amyvid pet scan done a few weeks ago should show that most of the amyloid gone from my brain
20 years too late i must add
whats left is that i have a brain full of tau tangles doing their job on me
its what needs to be attacked now
did removing that amyloid help me
i think so
i also think i didnt get the placebo since i had the severe headaches when i started that folks with the apoe 4 apoe 4 gene can have when they take aducanumab
now my brain is partially empty of amyloid i think it helped to get rid of this
i know though that it will reaccumulate up there
which eventually will speed things up again
so my goal now will be to attack the tau protein
there are studies that will start in the future where the amyloid and the tau will be attacked at the same time
i may be too late for them though
there is a national study removing just the tau
i cant get into the study for 6 months since i have to be off the aducanumab study for that long to start a new study
i have the protocol for that new study to remove tau
i plan to start it next week
at the end of the year the results should be out
if its working ill just stay on the drug
there is also a study using iv infusions of an antibody against the tau protein
i will probably have to wait for 6 months before i can enter it
i plan to do it if i can qualify
then i realize that it is important for me as well as for all of you to do things that we all can do to slow down or maybe prevent this disease
these things below i think are really why i have gotten better
plus i do feel like the aducanumab helped some
even though i was much better when i started the study
i barely got into the study because my memory was improved
these things to do ive been doing for a while
i plan to fine tune them some
exercise increases the blood flow to the brain carrying more nutrition and oxygen to the brain cells
it can actually help lower the amyloid in the brain
strict control of cholesterol and blood pressure
these two are real important in slowing down the disease and preventing it from starting
the mind diet
this one is probably just as important as blood pressure and cholesterol and exercise
keep my mind and body active
maintain a normal weight
sleep is a major issue
i sleep only 5-6 hours at night but have incorporated a nap schedule in the early afternoon
this helps a lot
its mainly caused by the lack of sleep from my alzheimers med aricept (donepezil)
relax i mainly do this with my gardening
if i was a meditator that would help
i am revisiting dr bredesens reversal of cognitive decline protocol to fine tune that
then as of right now thats all i can do until i find another promising study
i would hope that many of you at risk will aggressively do these same things
in this study i received 27 infusions
there were 1600+ of us in the study
its estimated the infusions cost $4,000 each
thats over $200,000,000 just in infusions
thats only part of the cost of doing this research
i had around 3 amyvid pet scans thats $24,000,000 for all of us in the study
i had around 10 mris thats $48,000,000 for all of us in the study
i had tons of blood work
i had mulitple memory tests
i had multiple neurology doctors visits
i had muliple ekgs
this study cost millions and millions of dollars to do
the biogen company bet the farm on the study as one reader wrote me
they may have lost it all
hopefully it will show some use as an early early preventative treatment to prevent the alzheimers cascade from starting when folks are in their middle age like mid forties
that is an age though when its hard to convince folks to do something to stop the disease thats years away
i hope it all was not for naught
and
yes
if i could do it over again i would do it again
the organicgreen doctor
No comments:
Post a Comment