alzheimers news-exiting

ALZHEIMERS NEWS-EXITING

should i or shouldnt i
that is what ran through my mind when she called and said
we need to schedule exiting visits

exiting interviews
i thought

yall jerked the rug out from under me and over 1600+ folks who had our hopes for the future
dashed
like throwing a wine glass into a fireplace
we crashed and burned

then
after 24 hours of thinking about it
i had a change of heart

it helped to read this article from the ny times by a writer who was also in the study
while reading the article i realized that i am earlier than probably most of the folks who were in the study
i barely made the cut
when i went online to see if i qualified i answered all the questions they asked on biogens website
result
you dont qualify

however when the testing at the alzheimers center at ut southwestern in dallas occurred there were steps you went through to get approved for the study
the first was my old records when i was first diagnosed with mild cognitive impairment that showed lower than normal scores on my memory tests
these are what i think got me into the studies
that and the positive amyvid brain pet scan for amyloid that was done at the end of the lengthy evaluation to get into the study

i was excited my family was excited my friends were excited my former patients were excited people i dont know were excited

now i knew that removing the amyloid was only part of the story
there was more to treating this disease that i was missing
like the tau protein that accumulates
but
i felt like that this treatment with aducanumab would slow things down some
i really feel like when they look back and if they keep following folks longer they will find that those like me probably got some benefit from the treatments

so here is where i am
yes like him i felt like i got punched in the stomach
knocking out all my wind
im just now catching my breath

i have to do exit interviews next month
having a full neuro exam
having memory testing
now on the memory testing they cant get better than they have been in the last two year
ie normal
a final exit mri
then
in 18 weeks a final final visit to do a final check out

i could say f you
but
i realize that something may show up when they really analyze the data from the study
i want all my information i can give to be available

now my clock is reticking
in 6 months i should be able to apply to enter another study
maybe
which i plan to do

i know that since ive been on the aducanumab for awhile that most of the amyloid that can be seen on the amyvid pet scan is gone from the brain
to get in many of these studies you have to have a positive scan
how long before my scan gets positive again i dont know

a conundrum

now when i chose this study
i realized i might only have one chance to get this right
i looked carefully at all the studies that were out there
some starting some not quite ready to start
i think most researchers and patients would have chosen the biogen aducanumab study

i also realize that this might be my only chance to get in a good treatment study
if so
i accept that
i knew that could happen

so
its for now

living right
taking my supplements that may or may not help me
taking good care of my health

enjoying my life
never ever looking back

exiting stage right

the organicgreen doctor