my story revisited#111-interviews

MY STORY REVISITED #111-INTERVIEWS

i had forgotten about this 2013 interview with the public radio kut in austin
interesting was the interviewer that day was a cousin of my good friend from arkansas gf who died a few years later with huntington's disease

hearing the interview this morning made me think a lot about gf
he found out in his early 40s when he did genetic testing that he had the gene
this meant that sometime in the future this disease would win out in the end
it did
about 20 years later 

i knew the last time i saw him that would be the last time i saw him
it was

i really was thinking in 2013 that now 8 years later i would be in a long term facility in the later stages or i would have already passed on

i havent im still here
i definitely didnt think i would be able to be giving an interview to the ny times an interview to the alzheimers website being patient an interview with the local newspaper or be part of an alzheimers panel for a greater la alzheimers conference

i really didnt think i would have been around even for mr hudsons birth and his subsequent journey to getting a transplant or the birth of my other grandson mr n
if you had asked back then i would have thought i would be alive for ms b but i wouldnt know it

im still here
doing interviews
still doing my part to slow this all down for myself and others

i got my 6th infusion of the real drug in the embark biogen aduhelm (aducanumab) study at ucla this week
it is the 6 mg/kg dose
thats the dose where the microbleeds or aria can happen especially in folks like me with the apoe 4 gene

next month i will start on the 10 mg/kg dose
this is the recommended dose to use of aduhelm to treat alzheimers
its also the dose that can cause the microbleeds

reviewing the protocol of the previous study i was in i got 18 months of placebo then got a tapering up dose to 6 mg/kg aduhelm
i didnt have the 10 mg/kg dose 
i had mris that showed no microbleeds in that study
so
these next two infusions of the highest dose are important 
i will have an mri of the brain to make sure a microbleed hasnt happened
if it does i get paused in the study then will restart it when it clears
since i have the apoe 4 gene i have a 40% chance i will have a microbleed

if i get through the holidays ok then i probably wont have microbleeds

its a risk i knew about before i started and i accept that risk
___________
10-08-2013
RADIO INTERVIEW

here is a national public radio kut austin link to an interview that i did along
with two others for the alzheimers association
there is an audio version and farther down the page a video
_________
here is the 2013 kut interview video below with my interview in it
my part is at the 25 second mark to the minute mark with a video then you can hear my voice over later on

my suggestion
dont ever give up

the organicgreen doctor