i am preparing for two presentations over the next 3 weeks
one an alzheimers panel that i will be on answering questions about having mild cognitive impairment from a moderator and the audience at ucla medical center in santa monica
then
another doing a 20 minute presentation on telling my story with my diagnosis followed by questions from the audience at the valle verde facility in santa barbara
then
a usc professor wants to interview me about being diagnosed while i was practicing medicine
then
yesterday and the day before i started the long term extension that will last another two years and maybe longer of the biogen aducanumab study
this time i will either get the 3 mg dose or the 6 mg dose of the aducanumab
since i have the apoe 4 apoe4 gene i cant get the larger 10 mg dose since apoe 4 folks run the risk of having brain bleeds on that dose
the 10 mgm dose is the dose in the phase one study that worked the best
it cleared all the amyloid out that showed on the original amyvid scan in the phase one study
my two doses that i might get still cleared most of the amyloid but not all of it
in the first part of this phase three study im in now i either got the placebo or the other two doses
if i got the real stuff then they leave me on that dose
if i got the placebo then i get randomly the 3 mg or 6 mg dose
i want the 6 mg dose
well actually i want the 10 mg since i dont mind a little brain bleed
since
the option of doing nothing
well
that option is a hell of a lot worse than a little brain bleed
especially since most folks recover from the brain bleeds without effects
in fact if you get a bleed they just lower the dose then work the dose back up to the original one
i am so glad to get rid of the placebo cloud
have i lost ground by being on the placebo or have i wiped some of that bad stuff outa there
so all this alzheimers stuff plus getting ready for the alzheimers walk in november
see below
i feel almost like i have ptsd
i had to rethink about all thats happened in the last 10 or so years re alzheimers in my life
most if it is not good
my mother died
my brother died
my older brother was diagnosed
i was diagnosed
i had to quit work
i have made it my mission to go out there and talk about it freely
you ask me ill talk about it
i can see how ptsd folks do better being in the open and talking about their issues
i worry about not seeing my grandkids graduate from high school
i especially worry about not being around when mr h will need a lot of help
i worry about my wife she when she has to be a caregiver
i worry abut my two sons
i worry about my other siblings
i dont want any of them to have to deal with this
i think about my dad dying of a heart attack
i know he was headed down the alzheimers journey
man he spared himself and all of us a lot
i think about my mom and brother going down that alzheimer path to the end
when i do all these alzheimers things i do
sometimes its hard to make myself do them
i feel sad but no im not depressed
dont worry i get screened 4 times a year for depression
i cry sometimes as i practice my presentations or write my blogs
but
it really is therapeutic for me
i really hope that others can learn from what has happened to me
especially
the caregivers
please please take care of yourself
so
off i went yesterday afternoon
i had my amyvid pet scan that shows that bad amyloid upstairs in my brain
thats the one that on me looked like this 18 months ago
with it whirling whirling sounding like a washing machine spinning a load of clothes
when its over
what i would give to just take a look the screen
since then i would know
did it work did it work
or
did i get the placebo
ill never know
for now im looking forward way out into the future as far as i can see
im never looking back
only forward
im doing all i can to slow this down
but
will all im doing work
donate and or walk with you local alzheimers walk
my younger brothers team in the south arkansas walk to end alzheimers on saturday september 22nd is called
#joe nash
click above to see his team page
his course with alzheimers bothered and bothers me a lot
we were a year apart
he died not long after i was diagnosed
when i looked at him as he worsened i felt like i was looking in a mirror
i really thought when i was diagnosed that today i would be where he was when he was first diagnosed
if you live in south arkansas and know his family show up tomorrow and support them
and the fight against this disease
it means a lot to them
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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