my story revisited #113-what if what if

MY STORY REVISISTED #113-WHAT IF WHAT IF

i wrote this blog below around thanksgiving 2013
i was thankful then and i am thankful now that i was still and am doing cognitively well
if you asked me then what i would be doing today the day before thanksgiving 2021
i would have said i would be in a memory center hoping my family would visit me on thanksgiving
or
i would be bedridden 
or
i would be gone after going through the final stages of alzheimers

my younger brother had died in the final stages just three months earlier
so
this was always and still is on my mind
i think of it every day 
then
move on

i posted the result of my spinal tap showing my spinal fluid amyloid and tau
it was in the mild cognitive impairment range
i do wonder where it is now
since my amyvid pet scan for amyloid is positive
my guess is that that spinal fluid results have moved to the consistent with alzheimers disease range
or
as i found out this week reading research articles
my drug aduhelm and more so some of the newer antibody infusions against amyloid are changing the amounts of amyloid and tau in the spinal fluid
so
if i am lucky and if the aduhelm or aducanumab is working then my numbers could be getting better in my spinal fluid

i sure hope so

i mention two studies the a4 and the colombian studies
the a4 uses an antibody thats given to prealzheimers patients and they have been followed now for several years
some final results may be available soon
they probably will not be good results since preliminary ones werent promising
the drug solanezumab doesnt seem to work as well as my drug aduhelm or aducanumab

in the colombian study on folks with early onset alzheimers disease so far the results arent promising

i was hopeful then and i am hopeful now
since
i was hoping and trying to get in a treatment study
i did eventually 3 years later
then
my drug my study aduhelm or aducanumab got approved and is showing some promise to have some effect on slowing the projectory of this disease

im glad i didnt get into the a4 study
i tried but was declined since i was not normal enough 
interesting is today if i tried to get in with my improved memory tests i probably would be accepted

fate maybe

__________
11-24-2013
WHAT IF
for those of us who follow the alzheimers research
there are two things that we know about and are anxiously awaiting
the results

a4 study
colombian study
 
in both these studies
people in the a4 study who have
positive beta amyloid in the brain on scans called
amyvid pet scans and abnormal levels of beta amyloid and
tau levels in the spinal fluid
and in the case of the colombian study
family members who carry the gene for alzheimers that
means you will get the disease will also have these
two tests done

no one in either group have any symptoms yet

both studies will have regular amyvid pet scans and spinal
fluid analysis for the beta amyloid and tau
both imply if positive that the patient will get or will have
alzheimers disease

however

the study subjects will also be given one of the new alzheimers vaccines
which will induce or produce antibodies against
the beta amyloid and remove it from the brain

over time we will know if giving this vaccine early on
will prevent the development of alzheimers disease
which it will if the beta amyloid theory is correct

how does this affect me
the ogd

this last week i had my regular yearly visit with my neurologist
for follow up for
my early mild cognitive impairment amnestic type
that may turn out to be from alzheimers disease
diagnosed almost 3 years ago

i have been stable over this period of time except for some
mild problems with short term memory that only i notice

i presently take aricept (donepezil) 10 mg for the possibility
of having alzheimers disease
its used when the diagnosis is first made or in my case
strongly suspected

i take care of my health
especially my blood pressure and cholesterol
2 of the 3 most important to control to prevent or slow down
alzheimers disease
the third is diabetes which i dont have
more about this later

what i am looking for in research studies now

im in the alzheimers disease neuroimaging initiative now
its not a treatment study but its the most important one ever done
on alzheimers disease
the information from this study has provided the basis for the
a4 and colombian studies

i want to get treatment now while im so early no one notices anything
these two studies would be what im looking for

the colombian study is restricted to family members in colombia
that carry that awful gene which means they will get it
i know that i dont have that gene since ive been tested

the a4 does not
if i qualify i will get the beta amyloid scan amyvid and yes have
to get that dang spinal tap again and again
but i might receive one of those new alzheimers vaccines
that if it works would slow down the process at least while
i was on the study
unless of course i would get put in the control group
which i dont want to be in

if i dont qualify for that one
i will get in a nasal insulin study for 6 months
the nasal insulin increase the glucose into the nerve cells
in the brain where alzheimers starts as the insulin travels up the
olfactory nerve the smeller nerve i call it
which may slow down but wont prevent the disease
this may be my fall back study

then in 2014 or 2015 there is a study that will start in arizona
 
where those who carry the apoe4/apoe4 double gene like i have
which increases your chance of getting alzheimers disease significantly
will be given either a new research drug or one of the new
alzheimers vaccines
and
will be followed over a period of time monitoring the
beta amyloid scans and levels and the tau levels to see if they decrease
and to see if it prevents the development of the disease

the budget cuts and sequester had shut this study down
but the nih scrapped up funds to get it going

i am on the contact list for that study when it starts
i will do it if i qualify
but
please on please dont put me in the control group
__________
well i didnt get in those studies thank goodness
if had i wouldnt have been accepted in the aduhelm or aducanumab study

however i didnt get my wish since i got in the placebo group for 18 infusions
i did get 7 infusions of the real drug after that before the study was paused
then
when it was reactivated i have now gotten 6 infusions of aduhelm or aducanumab

for this im thankful
i am in a better place than i was 10 years ago
and
i am doing better than i expected i would be in 2021

so
i will be quite thankful tomorrow on thanksgiving day

the organicgreen doctor