my story revisited #185-it seems its helping some

MY STORY REVISITED #185-IT SEEMS TO BE HELPING SOME

if you look at the amyloid pet scan below
that first row of pictures is of a brain with no measurable amyloid plaques
thats what my amyloid pet scan i will get next summer should look like

now look at that second row of pictures with all that red stuff
that red stuff is amyloid plaque
my original pet scan which i never got to see should show a lot of red in my brain

the question is if you remove all that stuff does it make a difference
yes it probably does
about 30% difference

when i wrote this old blog below about biogens aducanumab i was trying to get into that study called the engage study
my first attempt i was turned down
i did an online survey screen on their website
then
about a year after i wrote this blog i applied to be in the engage clinical trial of aducanumab at ut southwestern in dallas 
after they reviewed all my medical records including new testing and my amyloid pet scan which was positive for amyloid plaques
i was accepted to start the engage study in 2017

i finished that study and began the embark study after the pandemic
i have gotten a total of 18 placebo infusions and 32 aduhelm or aducanumab infusions
i have 10 more infusions after that

my amyloid scan like i wrote above should look like the first row of scans below
my memory remains in the normal range

it took me 8 years to get to this point
__________

03-27-15
ALZHEIMERS NEWS-A GAME CHANGER
first a few years ago i had an infant that i cared for that
developed seizures that were difficult to control
imagine having a baby having seizures you cant stop
they tried the usual meds
but they didnt work


a new medicine called keppra had just came on the market
since she was at childrens hospital they used it on her
it worked
after 2 years she tapered off it and has been seizure free since

this drug is now available in its generic form levetiracetam
in a study recently low doses were given of 62.5 mg to 125 mgm
twice a day
for seizure control 500 mgm twice a day is given up to
3000 mgm a day

this low dose was given to patients with
mild cognitive impairment amnestic type
thats my official diagnosis

the results were that their memory tests improved significantly
meaning
that patients with this diagnosis could have their memory
improved with this generic drug

bring it on is what i say

now
the game changer

inside the brain of someone that has alzheimers disease
and
even years before symptoms start
the bad stuff beta amyloid starts to accumulate

it is easily seen on a amyvid pet scan like this one
thats all the red stuff on the scans

now
several companies have developed new drugs
that i call the alzheimers vaccines
using antibodies to capture that bad stuff beta amyloid
in the brain and removing it

there are several large studies going on right now
in patients with positive scans with no symptoms
in patients with the dominant gene
in patients with mild cognitive impairment
in patients with mild alzheimers and moderate alzheimers

a company called biogen has one called aducanumab
it was given to 166 patients in a phase 1 study who had early
alzheimers disease and positive amyloid scans

they were followed up to 41/2 years
the higher the dose used the better the results

the placebo group who received fake stuff
had no decrease in the amyloid on the scans or improvement
on memory tests

the treatment groups especially the higher dose
showed a decrease in the beta amyloid in the brain that was
seen on the brain scans
that correlated with
an improvement in the memory tests

this was significant

what this means is
the alzheimers vaccine seems to work by removing the
bad stuff amyloid
thats seen on scans
and
the patients memory improves noticeably at the same time

this is what we want right

so
the company is skipping phase 2 studies and are going
straight to phase 3 studies on a much larger group of folks

phase 3 is the stage that really proves if it works or not
then if it does it gets fda approval for
treatment of alzheimers disease

if it works
these drugs will be given to folks at high risk for alzheimers
years before the disease shows up as symptoms
slowing down the disease process
or
if we are lucky
preventing it

this folks is a real
game changer

i will be first in line for this one for sure
__________
now 8 years later
i
still drive
drive down into los angeles
still travel 
do all our financial planning our taxes
write almost daily 
usually speak for a few minutes at the walk to end alzheimers the last 13 years
am the volunteer garden manager of a large organic community garden
am the chair of our garden committee that runs the community garden
do most of our grocery shopping

none of this i thought i would be doing when i was first diagnosed in 2010

yes something is helping
hopefully its the aduhelm 

a game changer for sure


join me for our santa barbara walk to end alzheimers on saturday october 14th
join us and or donate to our organicgreendoctor team 

the organicgreen doctor