organicgreendoctor: July 2026

ALZHEIMERS NEWS-MY UPDATE

that is me talking before the walk to end alzheimers here in santa barbara about 3 years ago
at that time i was still in biogens aduhelm study where i was receiving monthly infusions of aduhelm for 34 months

in 2010 when i was diagnosed if you had asked me would i be standing up their telling my story making myself other panel speakers and hundreds in the audience cry i would have not believed you

but here i am writing my blog 16 years later

here is why

the aduhelm is an antiamyloid antibody given iv that removes amyloid plaques

amyloid plaques is where it all starts
later tau proteins unwind and forms tangles that destroys brain cells
later inflammation sets up in the brain in kills brain cells

aduhelm removes the amyloid plaques and slows down the disease by about 30%
aduhelm is off the market after being replaced by its cousin leqembi
later kisunia another antiamyloid drug became available

for these to work to slow down the disease they have to be started early
preferably before the tau tangles havent spread

luckily i got treated early in the disease process

my hope for me is that it was caught early before the amyloid plaques did too much damage and before tau tangles spread around the brain

so
to really find out you need an mri of the brain then an amyloid pet scan to check for amyloid plaques
then if you are early in the disease process a tau pet scan can be done for assessment for the spread of the tau tangles

if the tangles are wide spread these antiamyloid drugs probably wont help

for me
i had all of these scans early on in clinical trials
they dont let me see them though since they are hidden behind code numbers without my name
the drug companies ie biogen and eisai have them and maybe two univesities

my initial mris and subsequent mris about 10 for some reason i am able to access them
luckily my scans havent changed much in 16 years

the rest of the scans i cant see them

my initial amyloid pet scan was one in 2012ish in the ADNI 2 study
i never have seen that one nor was i given the result

it would be nice to know now 16 years later to know where i started at

my next amyloid pet scan was done at the beginning of the biogen aduhelm study in 2016
to get into the study the amyloid pet scan has to be positive
i was told my scan was positive but i never got to see the report or the scan

I had about 5 or 6 amyloid pet scans during my time receiving 18 placebo infusions and 34 real drug aduhelm infusions
on my last visit after the study was canceled i was told my last amyloid pet scan was negative

i had 2-3 tau pet scans with the last one being at the tail end of the study in 2024
i was never given the results

It would be quite helpful for me to know where i started in 2012 in regards to my amyloid plaques at the beginning
they measure plaques in centriloids
it would be helpful to know that number

it would really be useful to know my tau tangle burden on my tau pet scans
that number tells me how aggressive i need to be in regards to future treatments
tau scans show where tau tangles are in the brain which means where the alzheimers has spread

those scans are stored somewhere i just need to try to access them since they may be quite useful in my future care

i did locate my old spinal fluid level results done in 2011
these were done in a private lab
my amyloid levels were low and my tau levels were high but were just short of being in the alzheimers disease categories
it was in the mild cognitive impairment or mci range

interesting is that the ptau level can now be done on a blood test and is used as a screening test now for memory loss
if you have alzheimers it will be elevated
if the blood test was available in 2011 it would have been positive for me

to find out where i am now i either need to get a tau pet scan which may be hard to do outside of a research study or i could undergo a spinal tap to get my amyloid and tau levels in my spinal fluid like i did in 2011

i saw my neurologist who said i was a unicorn a clinical trial of one
not may follks have my 16 year history with full treatment of my amyloid plaques

i recently had a mri that was really unchanged from all my other ones
there has been some small changes that are age related

then finally i got my amyloid pet scan in may
this week we had a video conference with the neurologist and i got to see my amyloid pet scan
but
it was negative

there were no plaques left
there were some subtle changes
my centriloid reading was 21 which is negative
it needs to be 24 to be positive
she feels like my tau level may also be negative or low

but
of course
she has no 2011 or 2016 or 2018 or 2022 or 2024 amyloid pet scan to compare it to

nor a tau pet scan to look at even though i have had two or three of these done

so
our plan
i will enter a longitudal study where they monitor you long term
she will attempt to obtain my old scans from biogen or the 2 universities where i had them done

i am looking always for a treatment study somewhere that i might qualify for

but
at least i am amyloid pet scan negative and my memory is improved a lot since i was diagnosed in 2010 as she told me you are memory normal for your age

i guess ill take that

what can you do

if you are middle age take care of your health
maintain a normal weight
consider using meds to control your weight
these meds are going to get better and better with less side effects
i predict they will may allow folks to live longer and healthier
exercise mentally physically and socially
get adequate sleep
control anxiety depression and stress
limit alcohol intake or dont drink at all
dont smoke
eat a mind diet yes meat is on it
control your blood pressure keep it below 120/80
the younger you start the better
control your cholesterol
dont be afraid to get on medication for cholesterol
your heart and brain will appreciate it
control your blood sugars

how you control all these when you are younger may help delay the onset of dementia

then if you have memory issues get evaluated
not all memory issues are dementia
i have heard from several people who turned out to have treatable medical issues that was causing their memory loss

then if it could be dementia get a full workup

a good history and exam
labs
memory testing
advanced memory testing if necessary
mri
if indicated a blood ptau217
maybe an amyloid pet scan

in 2026 you usually can define why you have memory loss and whether you have alzheimers or other dementias

if caught early like mine was consider treatment with leqembi or kisunia with the understanding of risks and only the 30% slowing of memory loss

do all those healthy things also mentioned above
i would do those heathy things now

yes i will take that plan for me for now
i feel lucky

the organic green doctor

organicgreendoctor

Thursday, July 2, 2026

organicgreendoctor: alzheimers news-my update

alzheimers news-my update