i am done and its gone

I AM DONE AND ITS GONE


that scan on the right is a positive amyloid pet scan
all that red stuff throughout the brain is amyloid
the scan of the left is of a negative amyloid pet scan
there is no red out in the brain

in the theory of alzheimers the amyloid plaque that red stuff is deposited in the brain
it kills brain cells
later
tau protein tangles form which kills brain cells
later
inflammation sets up to kill more brain cells
these three what i call the trifecta of alzheimers kills brain cells
which causes what we see in our loved one as alzheimers

the approach now in 2024 is to attack each of the trifectas

first amyloid is now being removed with my drug aduhelm and the new drug leqembi and soon later this year another drug donanemab
all three are antiamyloid monclonal antibodies given as infusions 
soon they will be given as a shot you can give yourself
those studies will be out soon

if you can remove the measurable amyloid from the brain what effect does it have on the disease process
does it slow it down
does it stop it
does it make it go away
does it slow down the tau tangle accumulation
does it slow down the inflammation
does it really make a difference

here is what we know or think we know
they remove the amyloid plaques
folks memory decline stops or slows down

how long does the benefit last
will it really make a difference
well
we dont know
we will know in 5-10 years
just follow my story 
my journey over the next 5-10 year will the poster story for how well these drugs work

for me personally if i dont start getting more symptoms for another 5 years then i will be quite content with all my involvement in this study for the last 8 years

time well spent 

here is my story and where i am at today
i was diagnosed with mild cognitive impairment thats due to alzheimers disease
ny memory tests were intially abnormal 
my spinal fluid is abnormal for amyloid and tau levels 
i have the apoe 4/apoe 4 gene for late onset alzheimers
i have been on aricept or donepezil for 13 years
i have maintained my healthy habits

in 2015 i located information on aduhelm
in 2016 i started a several months evaluation for biogens aduhelm or aducanumab clinical trial
my amyloid pet scan was positive like that one above

in 2017 i started the biogen aduhelm study 
i received 18 months of placebo then 7 months of the real drug aduhelm
the study was abruptly ended
the restart was delayed by the pandemic
it was restarted as the embark aduhelm clinical trial
i then received 27 more infusions of aduhelm 
so i received a total of 34 monthly infusions of the real drug

recently the study was discontinued and aduhelm is being taken off the market
the company co owns leqembi which probably works better than aduhelm
they have decided to put all their emphasis on leqembi

yesterday day was my final day in the embark study 
the end of a 8 year journey which i never regret doing 
i had several hours of memory testing and a neurology exam and a final mri scan
the mri scan makes sure i havent had a brain bleed or other issues
all of my mris have been normal

here is where i stand now 13 years after my diagnosis
my initial amyloid pet scan was probably like that one above maybe not as severe as that one
the one done after the pandemic was still positive
i had had 7 real infusions but only two of those were the high recommended dose
in the embark study my next 27 infusions of aduhelm were the higher dose

the only problem i had was the onset of ocular migraines that started after my first high dose of aduhelm
it was bad enough i would have gone to the emergency room since i thought i was having a brain bleed
they stopped the infusions for a couple of months and did a series of mris to be sure there were no bleeds
the mris were all normal

i continued though to have ocular migraines once a month but over time they got less and less severe such that that the last few months of the study i didnt have any more headaches

having the apoe 4/apoe 4 gene put me at a higher risk for brain bleeds

i knew the risks and was willing to accept the risks

my last amyloid pet scan i had done 6 months ago shows that there is no measurable amyloid plaques left in my brain
my scan would look like the one on the left in the picture above

my memory tests done yesterday include a mmse and a moca test and others
both of these i can score as i go 
i got a 30 on both of them which is normal

my mri scan report will come through probably next week but i expect it to be normal

what do i do now
i wait
when the amyloid plaques reaccumulates in maybe 5-10 years i will need retreatment
my choice would be leqembi
it probably will be approved to be given at home as a shot 

i follow the research
two new anti tau drugs are being studied now
they are in clinical trials now
i dont qualify for these trials since my amyloid pet scan is now negative

a new antiamyloid pill is being studied
new antiinflammatory drugs for the brain is being studied
new drugs to alter the effect of the apoe 4 gene are being studied
new gene editing to alter the apoe 4 gene is being studied
there is more coming in the research world

if these come on the market i will probably take one of them

i stay on aricept
i continue to live healthy
i wait

so 
i am done and its gone
but
is it really gone
time will tell

the organicgreen doctor