my story revisited #95-my two year adni visit

MY STORY REVISITED #95-MY TWO YEAR ADNI VISIT

adni stands for alzheimers neuroimaging initiative 2
this was a five year study using a normal control group and a group with mci and a group with early alzheimers
they were followed for 5 years
at the beginning we got a neurology history and physical a neuropsychological exam which included the moca memory test a coke can sized blood draws for all kinds of alzheimers related testing much of it new studies mri genetic blood tests spinal tap for amyloid and tau proteins and finally the amyvid amyloid pet scan

these folks in the study were followed for 5 years doing these serial testing
eg i had two spinal taps 2 amyvid pet scans a gallon of blood donated several mris of the brain several neurology history and physicals
so 
at the end of 5 years i was well evaluated

it was at the end of those 5 years that i decided i would not do any more alzheimers clinical trials unless they were treatment trials
so
over those 5 years while in the adni 2 study i began to search for what drug study i might qualify for and what drug might be the one that would make it to market

in fact the last amyvid pet scan at the 5 year mark i skipped as there was concern it would interfere with my acceptance in the aducanumab treatment study
ie if you had a amyvid pet scan you had to wait several months before you could apply to be in the aducanumab study 

as i written before 
i seemed to have chosen the correct one

the biogen aduhelm (aducanumab) treatment study

it made it first to the finish line
it got there 3-5 years before the others did
some didnt finish the race

its got approved for the fda
i got 7 months of it two years ago until the study was stopped
sorry that i got those 18 months of placebo
but 
someone had to be in the placebo group 
right

i had a 67% chance of getting the real drug 
but
i got in the 33% group ie the placebo group

now im in the full treatment group so i will get it another two years 
its possible that it might be extended after that 
so i wont have to get it in the private world for awhile

hopefully by then we will know how well it really works
this study i am in is the one that will really tell us if it aduhelm really helps or not

so 
i have now gotten 9 months of the real drug

yes 
it was worth it 
doing these last two years of clinical alzheimers trial

the result of that effort
i am getting the aduhelm early and will continue to get it into the future
the cost
time and effort
some peace of mind
__________
05-02-2013
MORE TODAY

theres even more today
its been a busy 10 days for me as im completing my 2 year
follow up for the alzheimers disease neuroimaging study and
then prepared for and did a presentation for the
alzheimers symposium on april 30

the study required visits last week on two different days to dallas
which i have written about as they have happened

now today my wife she and i go back to dallas to the
alzheimers disease research center at the university of texas
southwestern medical school for our final day of testing

today they interview her to see if she has noticed any problems
with me
the only problem i think she has with me is that sometimes i dont
listen to her and i dont do what she wants me to do
now thats been going on for years
then theres the falling asleep in the chair at night while watching tv
something that many of the people that know me well have
experienced over the years

they have already interviewed me about some event in the last month
to see if our stories match up
the  problem is that my wife shes doesnt remember the story as well
as i do
whos got the memory problem huh

then i have a boatload of blood work
they take out more blood than lance uses to load up with before a race
and test it for the usual things like anemia liver tests kidney tests
glucose etc
then they test it for blood biomarkers-beta amyloid and tau proteins
inflammatory markers and other proteins to use in their profile thats
been developed to help diagnosis alzheimers
a test that may be available in the future to everyone

then i have the my wife shes fainting spinal tap done
for beta amyloid and tau protein
last time my results from a private lab showed my levels
were close to those of someone with alzheimers disease
i have to decide this morning if i want to repeat those at a private lab
im leaning towards doing that

before the tap we plan on lying my wife she down on a table
elevating her feet
dropping down her head some
starting an iv to infuse fluids if needed
we want to be prepared for a repeat

then following that i go over and get to sit in that whirling machine
again for an hour plus

they give me an iv infusion of a radioactive substance that binds itself
to beta amyloid in the brain
wherever its located that sticky gooey substance that forms plaques
and is thought to be the indicator of alzheimers disease
will show up as abnormal areas

if you have alzheimers you will have beta amyloid in the brain
100%

now you can have beta amyloid and not develop alzheimers disease
but the odds are against you if you do have it

my decision after today will be do i want to spend the $3000-$6000 to
know at a private xray place if mine is positive
i will decide after i complete the test today
(the study im in is a blind study so that i dont get the results of the tests)

then when thats all done
after a busy 10 days i get a break to going back to my normal activities
for a year or
until i decide to be involved with some of the new studies that are looking
at potential treatments for this disease that could be available in
the future for people to prevent or slow down the disease

im ready and willing to try anything
the choice otherwise
is...
__________
my wife she survived that 2nd spinal tap
i wasnt sure if she would after that first one

she has been a good trooper through all of this 

i never got the amyvid pet scan in the private world since i got one to enter the biogen aducanumab study and was able to get the results
positive it was

my amyvid pet scan a year from now should be read as negative for measurable amyloid since the aduhelm (aducanumab) will remove most of the amyloid in my brain

will that make a difference
i hope so

this week after getting my second aduhelm (aducanumab) infusion we spent the day with mr n our almost 1 year old grandson mr hudsons and ms bs cousin
as i was writing this this morning i realized if you had asked me 8 years ago when i wrote that blog that day 
would i have been able to do and remember that visit
i would have said no way
i really thought i would be heading toward living in a memory center by now
but
i am not

i am thankful for where i am today
i dont really know for sure if all i have done the last 10 years has really made a difference or not

i cant help but think so

the organicgreen doctor