the one that made my wife she post this
someday your eyes will be filled with a joy so deep that they will shine
thats how i felt yesterday when i opened my news feed and saw the biogen aducanumab story
linked here
linked here
the form in the picture above was about moving from the 18 month blind infusions to the part where all the participants get the real drug no one gets the placebo anymore
i found out i got the placebo for 18 months then was converted to the real drug
the difference in how well it worked was in the dosing
i either got the high dose or the low dose
im hoping i got the high dose since its the one that seems to be doing the job the best
now you can see my scribbles on the page
now the two nurses htat worked with me the last 20 years of my career can probably read what i wrote
one in red was about the alzheimers conference in barcelona spain
the other was about the new blood biomarker test that may be available in the next 2-3 years
yes
you will be able soon to get a blood test to tell if you have alzheimers long before symptoms start
so we are getting closer to getting a blood test to tell you that you have alzheimers and now we have a drug that may slow it down
plus
by also doing all the healthy things one should be doing we might start to make a dent in this alzhiemers thing
this form was signed march 7th 2018
it was a year later after i got my last aducanumab infusion that they announced the next day that the study was canceled
a real low point that day
after doing the adni study i decided i didnt want to do another study unless it was a treatment study
i identified the biogen aducanumab one as the one that i wanted
it seemed to be the best of the new antibody against amyloid drugs being tested
so i began to track it
i saw the phase one results
basically those who took aducanumab after one year had most if not all of the amyloid removed from the brain
the scans on some of the folks were read as negative after a year
plus
their memory got better
then
the fda let them skip phase 2 studies since the results were so promising
the next step then was the phase 3 studies like mine above
these phase 3 studies are the last obstacle before approval by the fda so it can be used to slow down alzheimers disease for the rest of yall
last march the preliminary data when analyzed wasnt promising so the study was halted
then
more data was analyzed from the addtional patients that had been added
also the dosing had been increased for those of us in the study
it was this increased dosing that showed that
this drug did improve memory in patients with mild cognitive impairment due to alzheimers and early alzheimers
when this data was all analyzed biogen made its announcement
what does this all mean for me
what does this all mean for you
biogen aducanumab must be started early in the disease for it to help
it does not cure the disease
it does seem to slow it down though
for those of us fighting this disease we will take slowing it down
my goal and many of our goals is that alzheimers not be the disease that kills us
just old age
the company has applied to the fda for approval
if approved it will be on the market
maybe in 2020 or a year or two later
for me
i am waiting to hear from ucla if i am going to be in the group that gets to restart the study at least till the aducanumab becomes available
this 1-3 years could be the difference maker for me
since i am at the point where i am in a window of opportunity to do something to slow this down
that window will close if i dont do something
i will stay on aricept (donepezil) every day despite the side effects since it slows down symptoms
i will continue to do all the healthy things im doing now to slow this down
i will take the aducanumab now if i am able to
if not i will start it when it becomes available commercially
there are around 3000 of us who are waiting to hear if we can get back on it
will it cure my alzheimers disease
no
but
it will probably slow it down some
there is more to the treatment of this disease that will be coming in the future
this disease has probably multiple causes that end all with the same result
death form alzheimers disease
this finding yesterday is a step in slowing all of this down
in two weeks i am going to be on a panel at ucla answering questions from the audience after the showing of the documentary turning point which is the story of the failure of a similar drug made by lily called solanezumab
i had already prepared a five minute response to how i felt about having the biogen aducanumab study fail after it had so much promise
it was hard to prepare that five minute response
now
i can tear that one up and do another more promising response for the audience to hear
maybe inducing tears of happiness not sadness in those present that day
so
yesterday was a high point
i admit i cried as did my wife she
we know what this means for me for us for our family
maybe
for your family
to continue this fight we need
more money
more research volunteers
our santa barbara walk to end alzheimers is on saturday november 2, 2018
here is the link to my team and the walk site
we need help to reach our donation goal
click and donate and or join us
or
donate or join your local walk where you live
the organicgreen doctor
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