i am 16 days out from my first for sure aducanumab infusion at ucla
so far
so good
no headaches or side effects have occurred except for fatigue which i always get after the infusions
this may mean that i have been getting the real drug the last 18 months
since when you first get the new drug the first time and if you are apoe4 apoe 4 positive like i am then you are very likely to get a bad headache for a few days
a bad headache i didnt have after the november 3rd infusion
but
i did have one after the first unknown infusion in march 2017
a real bad one for several days
what this means is i might have been on the real drug for 18 months
im sure hoping so
i was reading an alzheimers blog written by a researcher who took care of his mom when she had alzheimers called alzheimers reading room on palliative care
when the time came his mom didnt get a feeding tube
why
he and she had this discussion a long time before she got worse
she didnt want one
she didnt get one
i have been redoing some of my legal paperwork recently to update it
i have a living will
i just did a booklet called what if...workbook
i just did a booklet called five wishes
in all of these documents i wrote like this these words
I DONT WANT A FEEDING TUBE WHEN MY TIME COMES
if someone does put one in me when my time comes
i hope they get struck by lightening and fall into a den of rattlesnakes then get covered with fire ants and roaches and rats
thats how strong i feel about this
its written my wishes all over these documents
i plan to have it tattooed on my stomach
just like i wrote it above in caps and dark ink
my wife she knows how i feel
now so does everyone else
alas though it does happen though
usually in a hospital setting
once its in there if someone objects to removing it
it will stay in until i die
thats when i ask fate to come back and strike the person who put it in me
so
in addition to all these written documents i have
here in black and white on this date in my blog the organicgreendoctor
are my explicit wishes for all to read and have access to
no feeding tube please
togd
here is the information on our team for the walk to end alzheimers next month
my team in the santa barbara walk to end alzheimers on saturday november 3rd is called
organicgreendoctor
click the link above and donate and or walk with us
the organicgreen doctor
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