my story revisted 4

MY STORY REVISITED 4

today i head down to ucla for my final mri as part of the biogen aducanumab study
i tried to remember how many mris i have had in the last 8.5 years since starting the alzheimers research studies that i have been in
i think that i have had around 10 brain mris

with these mris when they are done serially like i have had them they are looking for changes some subtle that can be seen when they are all lined
especially in the hippocampal area since thats where alzheimers starts

they pay special attention to the hippocampus since thats where brain changes first start
thats when the hippocampus starts shrinking
now they can pick that up early on the newer mris they do

also
as part of the biogen aducanumab they are looking for areas that may have had bleeding as the aducanumab antibody enters the brain and tears lose the beta amyloid plaques causing microbleeds which can show up on mris of the brain

after this mri i have one more visit in 3 months as a final exit interview

hopefully soon we will find out why they really discontinued the study so abruptly
was it causing significant side effects
was it just not making folks memories get better
hopefully we will soon know

they also are breaking the blind portion of the study at the end so we might get to know how much of the aducanumab we got

in the adni 2 study the alzheimers disease nueroimaging initiative 2 i had at least 5 if not more mris of the brain
for some reason i got the written report sent to me so i know all mine were read as normal

i wrote the blog below after i went up for the adni 2 study initial evaluation to be in the normal control group
what i didnt write in that blog that day was the fact that as i was doing the neuropychological exam i realized i had problems with my memory that i guess i wasnt aware of

just 2 years before i had done memory testing for my long term care insurance
one portion of that exam was where they read 10 words to me and i was able to recall all 10 of them
i got my long term care insurance
then
during this exam for the adni 2 study when i sat in that chair looking out that window they read 10 words to me and i couldnt remember but 4 or 5 of them
i remember getting cold and sweaty looking out that window
i realized that my time had probably arrived

it was a long trip home i must say
i was silent most of the way doing a lot of soul searching and thinking of what my mother and younger brother went through

i realized it was at this point when i was sitting in that chair what i was about to be up against
and what my family would eventually be facing

it was quite surreal

i wasnt truthful in my blog below
i knew i was through
i just had to wait for those final results that final official reading of my memory test

why do they take so long to report i thought over the next few weeks

i knew i was out of the normal control group

my patients and my fellow staff had no idea what was happening over the next month

it makes me think when you see folks sometimes you just really dont know whats going on in a persons life

yes the next morning i opened up my computer and wrote this blog
i dropped a lot of tears onto my lap top

if it makes you feel better about my health just fast forward 8.5 years to my last memory test i did last week i was able to recall all 10 words like i did before all this started

the amyvid pet scans and the spinal fluid analysis for beta amyloid and tau protein and the genetic blood test at that time were not readily available if at all through private doctors offices

today if you are willing to pay for them they can be done in the private medical offices instead of just in the research arena

during this time i may have seen you in the office knowing that in little over a month that i wouldnt return to work after my next neurological visit
i wanted to be 100% sure before i made my final decision

next week i will discuss in chapter 5 the blog i wrote the day before this one
it seemed so innocent like i had no idea what was about to happen

while in this blog below less than 24 hours before i had been confronted by what was coming

the research director and my wife she tried to say that what i noticed may not show up on the final report
but
no
i knew deep inside that day
it was my time


11-18-2010

FOLLOWUP ON ADNI STUDY(ALZHEIMERS STUDY)
well i went to the center for the initial evaluation for the adni study
the good thing was that i did not have to do a lumbar puncture yesterday
the bad thing is that when i go back i have to get it done

but after going through 3 1/2 hours of neurological psychological and neuropsychological evaluations the lumbar puncture doesnt seem quite so bad 

i was warned by testers that that is how most people feel who go through the testings
 
after the complete evaluation is completed in a few weeks then a decision will be made as to which arm of the study i will be placed in
the bad thing is that for the adni study i have to go through the neuropsychological evaluation again

the mri scan and lab work will also be done after the followup evaluation probably next month

no matter whether i am placed in the adni study i will have labs and a mri scan and a neuropsychological evaluation annually for as long as i live
i will be able to receive those results when they are done

if i am placed in the adni study i will get more evaluations over a 5 year period
much of the labs and scans that are done in the adni study are experimental and are not done outside of research studies
you cant just go to a local xray place and get the scans done or to the lab and get the genetic studies done
these results will never be given to me

the testing done outside of the adni study-routine labs, mris, neuropsychological evaluations though are results that i will receive after they are done and can be used to plan my future 

overall i am glad that i went
hopefully i will be able to contribute a small bit of information to fighting this disease

i will blog in the future about each visit when i go

the organicgreen doctor