my story revisited #110-the news got better over time

MY STORY REVISITED #110-THE NEWS GOT BETTER OVER TIME

in 2013 when i wrote this blog there wasnt really much hope in the alzheimers treatment world
this treatment mentioned in my old blog in apoe 4 patients didnt end up on my radar
why
i dont remember why 
at that time i was in the adni or alzheimers disease neuroimaging initiative with about 2 years left to go so i was looking for any new treatment studies that might look promising

at about that time two doctors were in the news
i linked up with them via an alzheimers discussion group on the alzheimers association website
they had both been in the national news also

one who was told he had alzheimers disease turned out not to have that official diagnosis
i think his memory may have been related to depression and other health issues
his memory got much better

i did think about that this morning since mine was getting worse about this time then something kicked in and it has improved since then
my memory tests are considered normal now but my biomarkers show its still alzheimers 
ie a positive or should i say multiple positive amyloid pet scans and a positive spinal fluid analysis for amyloid and tau 

the other doctor a dentist may have had his disease progress more as he seems to have dropped off from the public eye

i was hopeful when is saw that study 
i dont remember why i didnt sign up for it 
it may have been its location and its potential for being a successful treatment for alzheimers

it was about 3 years later when i discovered the aduhelm (aducanumab) study that i eventually got accepted into
it is now approved for use in mci and early alzheimers disease

now there are 3 other drugs that work in a similar way that could get approved for use also
see last fridays blog 

there was some excitement in 2013
but
its nothing compared to the excitement in 2021
__________

09-20-2013
THIS IS EXCITING NEWS

its not often that you get to write about exciting or good news
about alzheimers disease
its such a sad disease
you get it and really cant do that much really to stop it
maybe slow it down some

as many of you know my mother had alzheimers disease
my father died of a heart attack but probably had moderate alzheimers disease
my younger brother died a month ago with this terrible disease
and
i probably have early early alzheimers

the future will prove whether i have it or not
i personally am proceeding along the lines that i have it
(i take my aricept (donepezil)
so i can be prepared as much as you can for when that day comes
and
do whatever i can to slow it down
including
looking for any research where there is treatment that might work
early on like in cases like mine
 
i carry the apoe4 gene the double version
which increases my chances 15 times that i will get or have
alzheimers disease

yesterday an announcement was made  and is well described in this
article from the associated press which if you have a loved one with
early symptoms like i have you  should read it
and
this one with interviews with dr hilfilker and dr halperin about all this
one a physician the other a dentist
both whom i occasionally interact with online some
dr hilfilkers blog watching the lights go out is one i follow
and is on the right side of this blog in my favorite blog list
 
yesterday i gave a presentation about my story with possibly having
alzheimers disease to a small group
and much of what i talked about was in these articles

the federal government instead of a war on syria
has declared a war on alzheimers disease

the federal government was suppose to be funneling 100 million dollars
to fund alzheimers research
but
thanks to budget cuts that was not funded
however
the director of the national institutes of health has scrounged up
several millions of dollars to fund alzheimers research

one study will look at 650 people who carry the double gene apoe4
which means me
they will be given one of the new drugs yet to be determined to those
of us with the apoe4 gene hoping that it will slow down or prevent
the disease

i think this is the study that ive been waiting for
just please dont put me in the placebo group
most of the previous upcoming treatment studies i dont qualify for
since im so early
eg dr hilfiker is in an alzheimers treatment study using one of the new
alzheimers vaccines but  he is a little more advanced than i am

so folks this is my chance to maybe do something for myself that
might slow down the disease in myself

i plan on being the first to sign up

thank you
to the federal government for supporting this war
_________

we have made a lot of progress in the last 8 years since i wrote this blog
we have more to do though

the federal government is now putting more money into research

we also need more private support through the alzheimers organizations

i have set up my team for the walk to end alzheimers in santa barbara named
organicgreendoctor at this link

because of the pandemic we will not be walking at the walk site but my wife she and i will walk a route up to the santa barbara mission by ourselves wearing our alzheimers walk shirts and carrying our alzheimers flags

we will be thinking of our lived ones who had alzheimers 
mom nell
brother joe
probably dad charles
and
me

i seem to be the lucky one to have gotten a temporary reprieve

please feel free to donate to and or join our team to help raise funds to fight this awful disease

the organicgreen doctor