organicgreendoctor: my story #178-then and now

organicgreendoctor: my story #178-then and now: MY STORY #178-THEN AND NOW these pictures above are of amyloid pet scans of the brain form the phase 1 aducanumab study from nature on the l...

my story #178-then and now

MY STORY #178-THEN AND NOW

these pictures above are of amyloid pet scans of the brain form the phase 1 aducanumab study from nature
on the left is the scans when the study was started
on the right is the scans 1 year after treatment

that red stuff is amyloid 
the first one on the right is a placebo patient after one year
i was a placebo patient after 18 months
my amyloid pet scan probably looked like this after those 18 monthly infusions of saline
it would be full of the red stuff

then i got the real drug 
so far i have had #30 aducanumab or aduhelm infusions
my amyloid pet scan i will be getting in two weeks should look like the 10 mg/kgm  one
ie there should be no red stuff showing up

below i wrote a blog to ms b my granddaughter of around 3 at that time 

i wrote 
ms b look over at that chair 
if this stuff works then i will be sitting in that chair when you can read this
if it doesnt work then that chair will be empty

well 6 years later today as she reads this it looks like that chair has me sitting in it

__________
02-28-2017
DEAR MS B-TODAYS IT

now ms b
i hope when you read this
well my guess is that you will probably be around 10-15 years old
when you first read this
as you sit on the couch with your laptop or your whatever is being
used then
as you read this blog today
i hope you will be able to look over at the easy chair in your
living room
there sitting in that easy chair will be me
ill look at you
smile
ill understand
i we made it

you see ms b
i have or may have alzheimers disease
i hope by the time you read this
you will know a lot about the disease
we should have a good treatment or maybe a cure
when you read this

today ms b
your gma and i make the drive up to ut southwestern in dallas
a 3.5 hour drive
i drive up there
your gma drives home

today we are going there to get a scan
called the amyvid pet scan
its a scan that will show the beta amyloid if its there
hopefully you will know a lot about this disease and
will understand what this means

a quick summary
i have a strong family history of alzheimers disease
i have a gene apoe 4 that puts me at risk for getting alzheimers disease
i have abnormal levels of beta amyloid and tau protein in my
spinal fluid which is associated with alzheimers disease
i had a normal memory tests 8 years ago then 3 years later
it was abnormal

so i probably have alzheimers disease
i take medicine called aricept donepezil for it
i am aggressively doing healthy things to help
but
i need one more thing
i need the final picture the final piece of the puzzle
the amyvid pet scan for the beta amyloid

if its positive
well i got it that alzheimers disease

the good thing though is that if this thing is positive
like i expect it to be
then i qualify for the aducanumab study

i then will receive monthly infusions that has a chance to slow it down
or
if we are lucky stop it in its tracks

so ms b
todays important to us

so ms b
as you read this look over at the chair
if its empty
this stuff didnt work
but
if i am sitting over there smiling at you
well
then
this stuff worked
__________
 yesterday i had a tau pet scan at ucla
i was there for about 5 hours
i have had 3 of these 
i have one more to go next year at this time in this study

if i could see it i could tell where the alzheimers was active in my brain allowing me to predict where my symptoms would show up first

next week i have a day long of memory testing and neurological exams and end the day with a mri of the brain

looking back i feel like it was a good decision to be in this study

this week i can sit in ms b and mr hs living room and they will look over and ill be there

the organicgreen doctor

organicgreendoctor: censorship at its worst

organicgreendoctor: censorship at its worst: CENSORHIP AT ITS WORST npr.org i remember watching her read her memorable poem over 2 years ago tearing up some as she read it i knew that t...

censorship at its worst

CENSORHIP AT ITS WORST

npr.org

i remember watching her read her memorable poem over 2 years ago
tearing up some as she read it
i knew that this was a reading of a poem that will be remembered well in history 

it was maya angelouish
it was shown and read in schools and homes across the country
i wanted my grandkids to read it and watch her reading of it when they got old enogh to read
ms b was there 2 years ago
i want her to know who amanda gorman is
her generations maya angelou

i watched her read it this morning and read along as she read it
what
i said
is in there that needs censored by that elementary school in florida

this is censorship at it worst

take the time to reread this historical poem and watch her reading of it

whats wrong with us
__________
01-26-2021

A ONCE IN A LIFETIME POET 
every generation has its lifetime poet or author
my generation the baby boomers have maya angelou as its lifetime poet or author
other generations had robert frost
i can still hear maya angelou as she so eloquently read her poems
leaving a lasting impression on my brain and in my heart

so now
enter amanda gorman
this generations lifetime poet
the harvard graduate national youth poet laureate 
she also like maya angelou has left a lasting impression on my brain and in my heart

i want ms b and mr h and mr n to know who she is and to appreciate her artistry
listen to what she wrote 
and
listen to her read those words
and
follow what she wrote
for us all to make our lives better

she spoke so eloquently even though she started her life with a speech impediment
she overcame that as she also overcame a lot in her life
to be
the next lifetime poet or author of this generation

i sat down and watched the video below of her speech
as she spoke
i read the words that are posted below her video
to make it easier to appreciate what she is saying

this is the answer to what ails us as a society 
this twenty-two year old gives us the road map to the future
its up to us to follow it

ms b read and enjoy

click this link to the video if it doesnt show on your feed 

the hill we climb

 

“When day comes we ask ourselves,

where can we find light in this never-ending shade?

The loss we carry,

a sea we must wade

We’ve braved the belly of the beast

We’ve learned that quiet isn’t always peace

And the norms and notions of what just is

Isn’t always just-ice

And yet the dawn is ours before we knew it

Somehow we do it

Somehow we’ve weathered and witnessed

a nation that isn’t broken

but simply unfinished

We the successors of a country and a time

Where a skinny Black girl

descended from slaves and raised by a single mother

can dream of becoming president

only to find herself reciting for one

And yes we are far from polished

far from pristine

but that doesn’t mean we are

striving to form a union that is perfect

We are striving to forge our union with purpose

To compose a country committed to all cultures, colors, characters and conditions of man

And so we lift our gazes not to what stands between us

but what stands before us

We close the divide because we know to put our future first

we must first put our differences aside

We lay down our arms

so we can reach out our arms to one another

We seek harm to none and harmony for all

Let the globe, if nothing else, say this is true:

That even as we grieved, we grew

That even as we hurt, we hoped

That even as we tired, we tried

That we’ll forever be tied together, victorious

Not because we will never again know defeat

but because we will never again sow division

Scripture tells us to envision

that everyone shall sit under their own vine and fig tree

And no one shall make them afraid

If we’re to live up to our own time

Then victory won’t lie in the blade

But in all of the bridges we’ve made

That is the promise to glade

The hill we climb

If only we dare

It’s because being American is more than a pride we inherit,

it’s the past we step into

and how we repair it

We’ve seen a force that would shatter our nation

rather than share it

Would destroy our country if it meant delaying democracy

And this effort very nearly succeeded

But while democracy can be periodically delayed

it can never be permanently defeated

In this truth

in this faith we trust

For while we have our eyes on the future

history has its eyes on us

This is the era of just redemption

We feared at its inception

We did not feel prepared to be the heirs

of such a terrifying hour

but within it we found the power

to author a new chapter

To offer hope and laughter to ourselves

So while once we asked,

how could we possibly prevail over catastrophe?

Now we assert,

How could catastrophe possibly prevail over us?

We will not march back to what was

but move to what shall be

A country that is bruised but whole,

benevolent but bold,

fierce and free

We will not be turned around

or interrupted by intimidation

because we know our inaction and inertia

will be the inheritance of the next generation

Our blunders become their burdens

But one thing is certain:

If we merge mercy with might,

and might with right,

then love becomes our legacy

and change our children’s birthright

So let us leave behind a country

better than the one we were left with

Every breath from my bronze-pounded chest,

we will raise this wounded world into a wondrous one

We will rise from the gold-limbed hills of the West,

we will rise from the windswept Northeast

where our forefathers first realized revolution

We will rise from the lake-rimmed cities of the Midwestern states,

we will rise from the sunbaked South

We will rebuild, reconcile and recover

and every known nook of our nation

and every corner called our country,

our people diverse and beautiful will emerge,

battered and beautiful

When day comes we step out of the shade,

aflame and unafraid

The new dawn blooms as we free it

For there is always light,

if only we’re brave enough to see it

If only we’re brave enough to be it.”

by
amanda gorman
__________

our hill may be higher to climb than we realized
dont let a few ruin it for the rest of us

enjoy her writings ms b

the organicgreen doctor

organicgreendoctor: alzheimers news-can a mutation give us a treatment

organicgreendoctor: alzheimers news-can a mutation give us a treatment: ALZHEIMERS NEWS-CAN A MUTATION GIVE US A TREATMENT the answer maybe there is early onset alzheimers  it represents less than 1% of the cases...

alzheimers news-can a mutation give us a treatment

ALZHEIMERS NEWS-CAN A MUTATION GIVE US A TREATMENT

the answer
maybe

there is early onset alzheimers 
it represents less than 1% of the cases of alzheimers
it is caused by one of a few genes
one is called presenilin
you get the gene you get early onset alzheimers
its usually diagnosed in the late 40s to mid 50s
most die before the early 60s
some even younger

there is late onset alzheimers disease
it is associated commonly with the apoe 4 gene
if you have the double version of the gene you dont necessarily get alzheimers but your risk is increased 10-20 times

amyloid builds up first in alzheimers disease which kill brain cells
later tau protein unravels and causes tau tangles which also kills brain cells
also inflammation sets in which also kills brain cells

where tau tangles are in the brain is where the alzheimers is spreading
the symptoms you see will be based on what part of the brain is affected

one of the first things to happen is the loss of smell
that i have now
the area of the olfactory center gets hit early on
the entorhinal cortex is where alzheimers starts first
tau tangles there will show up on a tau protein scan in high numbers

in colombia in the mountains there is a large family of about 6000 inhabitants that have the highest incidence of alzheimers in the world
these folks get the early onset gene called presenilin
they get hit hard by the disease

historically a spanish conquistador introduced the gene into the population centuries ago
he was identified by dna analysis
since the large population is so isolated the incidence in the population has remained high

this large family has been extensively studied for over 20 years
using memory testing genetic studies mris amyloid pet scans and tau pet scans
several important anti amyloid treatment studies have been done on them
showing that anti amyloid treatment doesnt work in early onset alzheimers

in 2019 a women who had the presenilin gene did not get early onset alzheimers 
this doesnt ever happen
in her mid 70s she was mentally intact
she was found to have  another mutation on her apoe 4 gene called the christchurch mutation 
it was somehow protecting her from getting alzheimers disease

then recently a man who had the presenilin gene also didnt get alzheimers disease at a young age
he apparently did in his 70s about 20 years later

what they found on him was he had the presenilin gene
he should have been destined to die probably in his 50s from alzheimers
but 
he didnt
it was found he had a mutation of a gene that affects the entorhinal cortex
where alzheimers disease starts

this gene is called the reelin colbos gene
it apparently competes with the apoe gene

this patient had been studied extensively for years with scans
he had a lot of amyloid in his brain but had little tau tangles in his entorhinal cortex
where alzheimers starts

there should have been a lot of tau in his entorhinal cortex
there wasnt much

maybe scientist are thinking if they can use what they have learned from this patient they could develop some treatment using this gene site to treat alzheimers early on 
could this be a way to treat alzheimers before it starts

i see some excitement in the alzheimers world over this study

scientists think the reelin colbox gene provides some extreme resilience and protection against alzheimers symptoms
can science imitate nature by developing a treatment that mimics this protective features

could this gentlemans involvement in a clinical trial years ago lead to a treatment for alzheimers disease

maybe
likely

this is why one does clinical trials
this is why i have done alzheimers studies for the last 13 years
they have 13 years of memory testing mri scans amyloid pet scans tau protein pet scans spinal fluid analysis extensive blood testing my whole genome to look at
then i so far have had 30 infusions of the aduhelm which should have removed most if not all of the plaque from my brain
then
sometime in the future 
some neuropathologist will hold in his hand my brain
he can look at it and look at my old tests and see how accurate all this is
plus
he will have all my medical records from these studies
a big ole pile of records to look at

hopefully they will learn from my case

i wont benefit from any of  this above but my younger relatives will

i have thought about my case a lot since i am heading towards several days of testing at ucla
nearing the end of my study with aduhelm
a year from now when i finish i will be looking to decide where to go next

i think that since i was accidently diagnosed so early when i volunteered to be in the normal control group of the adni 2 study that i was barely starting into the mci range
the stage before the beginning of alzheimers

since i was so early that everything i have done has probably had a greater effect than had i started later in my course with this diagnosis

i was started early on aricept or donepezil
this has shown to be effective longer if started early in slowing down symptoms
i have been aggressive with my weight my diet my physical activity my mental activity my social activity 
i have been aggressive in controlling my cholesterol and blood pressure
i ahve been aggressive in getting sleep eg i only sleep 5 hours at night but compensate with an afternoon nap
i try to avoid stress in my life
i dont smoke and drink alcohol 
i use to drink a glass of wine at night but since i was sick with covid 3 years ago i cant tolerate it
i generally am happy with my life

oh and i have had those 30 infusions of aduhelm that has removed all my amyloid in  my brain

adding all that up thats why i havent fallen off the alzheimers cliff yet

today its aduhelm infusion #30 at ucla  
i have 13 more after that
then
we will see how all of this works

the organicgreen doctor