my story revisited-all day memory testing

MY STORY REVISITED-ALL DAY MEMORY TESTING

i am in the embark study of aducanumab in mci and early alzheimers patients who were previously in the engage or emerge studies of aducanumab
those who were in those studies had the option to continue in the embark study for at least two years
it has been extended to now 3 years
so i have at least two more years in the embark study which means i will receive at least two more years of aducanumab or aduhelm each month at ucla

it removes the amyloid plaque from the brain so that in two years there should be little of any measurable amyloid plaque left in my brain on amyloid pet scans

the thing i will have to decide in two years is do i want to continue to receive aduhelm or aducanumab in the private world where its available now but medicare and insurance wont pay for it

maybe by that time the results of this study and other studies will show enough data thats positive so the cms or medciare and medicaid will pay for it

i also may be able to seek out another treatment study after im finished with this one

i may have trouble qualifying though since i will have been treated for almost 4 years at that time with aduhelm or aducanumab

according to the study director yesterday early results show its removing measurable amyloid plaques and the plaques are remaining gone for months
future dosing of aduhelm after this removal may require only occasional infusions to keep the plaque from reforming

also the tau tangles numbers are being reduced

also the inflammatory response in the brain is lessened

so in 3 years i will have to make a decision on what to do 

hopefully by that time there will be available several options of medications given as infusions or pills or injections

reminder in alzheimers disease
amyloid accumulates in the brain for some reason and forms plaques and kills brain cells
then
tau proteins unravel in the brain cells and form tau tangles which causes brain cell death
then
an inflammatory response occurs in the brain where all this damage has occurred which causes more brain cell death

drugs are being studied that attack each of these three processes

yesterday i went to ucla for my 1 year follow in the embark study
a couple of weeks ago i had my annual neurology doctor visit for the study and my annual ton of blood draw for the study 

so yesterday it was all memory testing
it was over 4 hours of memory testings that was more involved it seem then when the study was started
all were done by a neuropsychologist except the moca test was done by the neurologist
i felt like i had just sat for my national boards or my board certification exam
like i had to do it twice in one day 

there are several memory tests included
moca or montreal cognitive assessment test
mmse or mini mental state examination
adas cog 13 or alzheimers disease assessment scale-cognitive scale
several others i dont know the names of

the moca is the one that trump said he took and got all the answers right
my guess he didnt really get them all right
its probably the best one to use in the office setting 
the moca test is more sensitive than the clock test or mmse in picking up mci or early memory issues
ive taken the moca tests numerous times twice a year for the last 12 years
i also have administered the test myself to several folks over that time period

i can score it myself as i take it
a perfect score is 30
the normal range is 26 to 30
my score yesterday was 30

the mci or mild cognitive impairment range on the moca is 18-25
my score when i started the adni study in 2010 was 25

the alzheimers range is less than 18
im not there yet
i hope its awhile before i reach that point

at one point about two years after my diagnosis my scores dropped to i think 23 then they gradually began to rise so that for the last several years my scores have been in the normal range

as i told the neurologist yesterday 
i feel the sharpest ive felt in a long time
i noticed it as i took the tests yesterday
eg the tester read me 10 words to remember using flash cards
i got them all right yesterday
12 years ago i only got around 4-5 of them right

you can still miss or not remember several things on some of the tests and still be normal
i wasnt even missing any yesterday

if i could stay as i am today i would be quite happy 

yesterday there was a new nurse practitioner with the neurologist who asked me questions about my history since we had a break in my testing

i explained to her how i was diagnosed accidently 
i volunteered for the adni alzheimers study to be in the normal control group
during testing it was noted by me and confirmed by the testing results that day that i had memory loss i had not noticed

i quit practicing medicine the day i was diagnosed and was started on aricept or donnepezil 
this drug is started as soon as you are diagnosed and may help slow down symptoms
it does nothing to stop the disease progression

i did 5 years of the adni study which is all diagnostic testing ie labs memory testing amyloid pet scans mri scans glucose metabolism pet scans and spinal tap for amyloid and tau 

after the adni i entered the biogen aducanumab study 
i received 18 months of placebo infusions then 7 months of the real drug aducanumab infusions
the study was paused for almost two years during the pandemic then was restarted last year

it would be interesting to see if any of my amyloid reaccumulated during that 2 year pause of the study

i am now 12 months into receiving monthly infusions in the embark study
one month was paused because i had 3 weeks of headaches 
my mris were all normal and have remained normal ie no brain bleeds or staining was noted

so 
at my annual follow up for my embark study
my memory remains in the normal range on testing
i only notice what a normal 72 year old male would notice
i feel healthy otherwise
i am on the maximum dose of aduhelm or aducanumab that shows to work the best
the 10 mg per kgm dose

i plan to continue it long term until i get a better option than aducanumab

stay tuned

if you are in the alzheimers world or want to seek treatment before symptoms starts or if you have symptoms now
there are treatment studies using drugs that will be on the market the next 5 years 
these studes are available across the usa

seek treatment early 
take care of your health now while you are young

the organicgreen doctor