organicgreendoctor: my story revisited #215-reflection on reflection

organicgreendoctor: my story revisited #215-reflection on reflection: MY STORY REVISITED #215-REFLECTION ON REFLECTION  i have been doing a lot of reflection this last week i just finished a 5 minute video on m...

my story revisited #215-reflection on reflection

MY STORY REVISITED #215-REFLECTION ON REFLECTION 


i have been doing a lot of reflection this last week
i just finished a 5 minute video on my story that will be posted on the being patient web site
i have watched the video several times since i completed it
i watched it yesterday since i finished it last week

yesterday i got confirmation that it was accepted

when its available i will post the link

it for some reason was hard to do the video
i had to make myself do it
yes
i cried several times since i had  a lot of flashbacks to the last almost 15 years

i realized how lucky i am to be here today writing this blog
almost 15 years ago i really didnt think i will still be here today
but i am

as i watched my video this week i noticed there are changes in my speech patterns
i noticed that i have aged more than i realized but havent we all
but
i dont notice any drop off in my memory
my last memory test was a year ago and it was normal
i dont think that has changed

i do worry though that changes could start up any day
so far so good
__________ 

10-15-2015
ALZHEIMERS NEWS-REFLECTION

thats what ive been doing the last few days
reflection
it happens every year as this time
when i have my annual neurology appointment

i try to look back to where i was at one year ago
and
try to see where im at
am i better
am i worse

i must say
i feel im better
my memory doesnt seem to have worsened

i seem to be in good physical health
heck i walked right up that enchanted rock a few
weeks ago without getting short winded at all
i can work all day with younger folks doing the
landscaping at habitat
i do lots of manual labor around here
so im ok physically
then

i  seem to be doing ok
i dont feel depressed
im not stressed out
while we do need a little rain around here
maybe thats coming next week
i dont feel too sad about things
but
writing the blog about my younger brother
and
alzheimers this week did bother me some
but
overall all im doing ok

for this appointment
i plan to try to get into a new treatment study
hopefully one using one of the alzheimers vaccines

if i dont get the placebo and if it works then i will have
gained 2-3 years of treatment
a 50/50 chance of getting the treatment
odds ill take
since the odds of no treatment would be 0%

then if the study shows it will be effective
i will jump onto the treatment wagon when its commercially available

in fact we are planning on it being available in our near future
choosing our drug plans and our future financial
planning
knowing that it will cost $20,000 a year
hopefully we will have to pay only a percentage of that

in preliminary studies on a small number of
folks with mild memory loss
they not only got better as measured by improved memory
but
they also had less bad beta amyloid accumulation in the brain
that red stuff on the scan below

that is if it works
so the next few months will be hopeful ones

these treatment studies are important
since
if they work
my siblings my sons my nephews my nieces my cousins
may be able to be evaluated earlier in life
and
be able to begin treatment years before symptoms occur
so
this is why its so important
its very personal

then
if i enter the study i will finally have the
amyvid pet scan
for alzheimers where i will be able to get the results
it measures the bad beta amyloid in the brain
that red stuff in the above scan

if its positive
its the final test that solidifies my diagnosis
well as well as can be done without a brain autopsy
when this is all over with

or
if i dont get into the treatment study
i plan to pay for the amyvid pet scan myself
as
i want a final answer
so we can definitely plan our future days


then on saturday
we will do the little rock
walk to end alzheimers
on my younger brothers team
#joe nash

so the next two days will be all about
alzheimers disease
and
how to stop it
__________
when i wrote this blog almost 10 years ago i was being considered for the biogen aduhelm clinical trial where i eventually got 34 months of monthly infusions of aduhelm
initially i was placed in the control group for 18 months but later a cross over was done and i was placed on the real drug

it was about this time a few months later when i got my amyloid pet scan results
it was positive for amyloid plaques
a requirement to be in the study

if you look at that amyloid pet scan above in the old blog
the scan with the red stuff was like mine when i started the study
the scans without the red stuff above is what my scans looked like after my treatment

at the end of the study my final amyloid pet scan showed no measurable amyloid plaque in my brain

after writing this old blog i went to a walk to end alzheimers where my younger brothers team was there
it was one of the better walks i had done
we all cried during the ceremony

i really thought that day at the ceremony that i was next and would not be here in 2025
but
i am 
mostly intact

I am just waiting for whats next

the organicgreen doctor

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