organicgreendoctor: do we fall forward or fall backwards

organicgreendoctor: do we fall forward or fall backwards: DO WE FALL FORWARD OR FALL BACKWARDS when my iphone says 200 this sunday morning will it really be 100 or will it be 300 its that time of th...

do we fall forward or fall backwards

DO WE FALL FORWARD OR FALL BACKWARDS

when my iphone says 200 this sunday morning will it really be 100 or will it be 300
its that time of the year
its daylight not savings time

i blog about this twice a year

if i could choose i would rather have more light in the morning than more light in the evening
since i am an early morning person

so
lets see
at 200am i turn my clock forward or is it backwards

so i think its backwards
so at 200am its 100am
at 5am its 4am
at 800am when i go to my garden then its 7am
that means at the new 8am there will be a brighter sun and it will be warmer
or
is it just the opposite

ill just wait until sunday morning to figure this out when my iphone does the change for me
ill just follow what it says

it doesnt have to be this way
congress just needs to fall back or spring forward to lock the time in its place
i never heard this discussed though in any of the presidential debates or ads or rallies

bet there will be questions to the candidates on sunday 
everyone will be tired and grumpy from the time change
or
is this the one where you get an extra hour of sleep

let me try again
i wake up at 300am so it will be do 200am
the sun usually comes up at 700am so will the new time will be 800am
no i think im wrong it will be like 600am
no thats not right

then it gets dark at 600pm but it will be 500pm the new time
right
thats not good
so kids get home from school and only have a couple of hours before dark
thats not good

nothing is good about all this

heck i cant figure it out
ill just wait and look at my watch on sunday morning and use that time
like
ill go to the garden at 800am 
it will either be real dark
or
it will be sunrise time

i just have to wait to see

its all so confusing isnt it

fix it please

the organicgreen doctor

organicgreendoctor: alzheimers news-why i did it

organicgreendoctor: alzheimers news-why i did it: ALZHEIMERS NEWS-WHY I DID IT thats me giving a talk on alzheimers in austin texas a few years ago afterwards folks were allowed to ask quest...

alzheimers news-why i did it

ALZHEIMERS NEWS-WHY I DID IT

thats me giving a talk on alzheimers in austin texas a few years ago
afterwards folks were allowed to ask questions for about 30 minutes
it is also the picture the beingpatient.com website used when they posted my almost 1 hour interview with them
click on the link here or above to watch the video of the interview or read the interview transcript

I was reinterviewed by them again last month about the apoe4 gene
the interview veered off into her asking lots of questions about my story 
she said she was intrigued with my story 
would i mind writing a couple of articles for them

i thought what i would do would be to write the article first on my blog then send it to them 
where they will edit it before its published

if you are in the alzheimers world or dementia world this website is one you should be following
it will keep you updated on what is happening in that world

one topic they wanted to know about was my experience with aduhelm and what are my next steps

here is my draft of that first article

aduhelm or aducanumab is a monoclonal antibody that when given intravenously binds to amyloid plaque and removes the plaque from the brain
doing this in theory should slow down memory decline

in the theory of alzheimers amyloid plaque accumulation in the brain may be the cause of alzheimers disease
it also entails tau tangles and neuroinflammation
aduhelm attacks mainly the amyloid plaques

i first read about aduhelm when it was in phase 1 clinical trails about 12 years ago
when they reported out the first results showing that most of the measurable amyloid plaque was removed at one year of treatment and that the study subjects showed a slowing of memory decline or no memory decline i followed the studies closely

when the aduhelm clinical trials were seeking study subjects i initially applied online but was turned down since my memory had returned to normal levels since i was diagnosed with mild cognitive impairment due to alzheimers a few years earlier

later i applied again and after a several months evaluation of labs extensive memory testing amyloid pet scans genetic tests mris and an extensive review of all my previous memory testings and medical records i was accepted into the study 
my amyloid pet scan was positive for amyloid plaques

initially i was at the university of texas southwestern medical school where i received my first infusion in the study in 2016

i moved to california in 2017 so i transferred my clinical trial participation to ucla
after 18 months the trials were abruptly stopped with no thought of restarting them
it was a gut punch for those in the study
that is when i found out i got 18 months of placebo
another gut punch
i just knew i was getting the real drug
i knew though when i signed up that i might get the placebo
a chance you take in doing clinical trials

lucky though
sometime after the pandemic biogen decided to restart the study
that is about when they did a cross over where i was placed on the real drug aduhelm

one of the biggest side effect of taking aduhelm is aria or amyloid related imaging abnormalities that manifests itself as edema or bleeding
the incidence is small
it can be severe though

dr daniel gibbs in his book and blog a tattoo on my brain describes how he was in the study 
like me he is a homozygous apoe4 apoe4 carrier which put us at a higher risk of these bleeds
i didnt ever have a bleed but he did
a massive one
he almost died
his book is a good read if you are in the alzheimers world and he also has a documentary about his journey 

when my dose was increased to the maximum dose i did develop a severe ocular migraine with an aura where my visual field was overtaken with waviness like crinkled up tin foil
it lasted about 1 hour
it was associated with elevated blood pressure headache and nausea and fatigue
the headache lasted for several days but was mainly controlled with acetaminophen

because of this my aduhelm was discontinued for about a couple of months
i had a series of mris that were normal
the aduhelm was restarted

i continued to have these headaches each month but they gradually got better
my last few didnt really keep me from doing things

now that i am off the drug i no longer have these headaches

luckily i had one similar to this 10 years before so i knew what it was

i always say you have to want to be on these experimental drugs
it would take 6 hours of travel and 3 hours at the infusion center to get these infusions
there were a lot of stop and go with this study
interesting is that they had very few folks drop out of this study
we all understood this may be our only chance to take a drug that can alter our disease
whatever it takes is what many of us said

how i found about this drug study initially is i stayed in contact with the alzheimers research center at the university of texas southwestern who notified me when the study was offered there
i also read several alzheimers newsletters and get regular google feeds on alzheimers

one of the problems with aduhelm is that biogen tried to rush through its clinical trials to get it approved by the fda
they appeared to use some political influence to get it approved
this left a bad mark on the drug that it couldnt overcome

i was interviewed by the ny times about my involvement and how i felt about its difficulties getting approved
i said it smelled bad

sad thing is that after getting 34 months of aduhelm in the study all the measurable amyloid is gone from my brain
it did its job

it is now off the market since its cousin leqembi had a better record and is approved by the fda
it is also owned by biogen so now its not available but leqembi is
 
why has my memory gone from the mci range in 2010 to now being in the normal range

i think its
 
doing all the healthy things one should be doing especially controlling my blood pressure cholesterol and weight staying active mentally physically and socially getting adequate sleep eating a healthy diet like the mind diet maintaining a normal weight not smoking not drinking alcohol and generally living a stressful free life

taking aricept or donepezil as soon as i was diagnosed 14 years ago
studies show the earlier you start the drug the longer it slows down symptoms
folks started early on on aricept live longer

taking aduhelm since aduhelm probably slows down memory decline maybe although not finally proven since all the studies havent been completed

all my measurable amyloid plaque as of several months ago is gone from my brain as seen or should i say not seen on my last amyloid pet scan

now what do i do 
now what do 100s of us who have been treated and had our amyloid plaque removed
what do we do now

well 
we wait till medicine and science tells us what to do next
when do we get retreated
do we need a maintenance dose

as of now medicine in science doesnt know what to do
we wait

we also generally will not qualify for any new clincal trials since we are amyloid plaque negative
you have to be amyloid positive on an amyloid pet scan to qualify for new clinical treatment studies

we all need our tau and our neuroinflammation treated but those treatments are in clinical trials and we wont qualify to be in the studies
most of us would jump at a chance to get in one of those studies
i know i would
ive tried already
sorry they said you dont qualify

so
we wait 
all hundreds of us waiting to know what to do next
knowing if we wait too long we will be to gone to qualify for any treatment since if you wait too long the drugs wont help

for me
i am doing all the healthy things i am suppose to be doing
i still take my aricept each day
i wait

if you are in the santa barbara area join us for our walk to end alzheimers at the link below
or
join a walk where you live
here is the link to our team organicgreendoctor to join or donate 
see you on saturday november 16th at chase palm park 

the organicgreen doctor

organicgreendoctor: did it again

organicgreendoctor: did it again: DID IT AGAIN as soon as i got my ballot in the mail i filled it out then i stuck in the mailbox the next morning to mail i did not want to w...

did it again

DID IT AGAIN

as soon as i got my ballot in the mail i filled it out
then i stuck in the mailbox the next morning to mail

i did not want to wait another day to vote
i was afraid i would die early and not get to vote in this election
one i dont want to miss

the day i voted i wore this proudly on my shirt all day
i still have it
think ill save this one


since moving to santa barbara i have always voted by mail
its so easy to do
you get a voter guide that covers all the election information so its easy to follow 
i skimmed this plus read a lot about the local issues so i could vote more intelligently


there were 6 choices for president
as far as i am concerned there is only one choice

i wonder when jill stein will quit running for president

we had to vote twice for senator 
one for a term till january
another for the next 6 years
i doubt that will be a split vote

the other parts the amendments or whatever you call them took more time
i did read about them before i voted
there seemed to be a lot of infrastructure issues on the ballot 
i voted for them since we always seem to ignore infrastructure and maintenance until its too late

then i placed the ballot in the envelope 
sealed it
signed the back of it
placed in in the blue mailbox a block away

i will get a notice when its received and when my vote is registered

now
i just have to wait unit november 5th to see if our world ends as we know it or see if it will survive

the organicgreen doctor

organicgreendoctor: alzheimers news-another new treatment

organicgreendoctor: alzheimers news-another new treatment: ALZHEIMERS NEWS-ANOTHER NEW TREATMENT there have been 3 monoclonal antibodies cleared by the fda for treatment of early alzheimers disease a...

alzheimers news-another new treatment

ALZHEIMERS NEWS-ANOTHER NEW TREATMENT

there have been 3 monoclonal antibodies cleared by the fda for treatment of early alzheimers disease
all 3 bind to amyloid plaques or amyloid to remove them from the brain
by removing this amyloid plaque it is thought and hoped that this will slow down the disease
not stop it or prevent it but slow it down

there were a couple that were developed that didnt work at all

then my drug aduhelm came along
it got fda approval but had a stormy course so that now its off the market
it worked but its sister drug leqembi probably works better so biogen chose to drop aduhelm and keep leqembi

the aduhelm after 34 monthly infusions removed all my measurable amyloid plaque

leqembi was approved by the fda and is being given to folks all over the country for early alzheimers
its given as a twice a month infusion at infusions centers
studies are being done so it can be given as a shot at your home
if approved that may be the way to go is to get the shot at home

then there is kisunia which is given once a month and probably works better but also probably has more side effects
its given as an infusion for a shorter period of time less than a year maybe

no one seems to know yet what to do once the initial treatment is done
we will have thousands of folks like me who have no measurable amyloid plaque wondering what to do next

now a new drug called remternetug is in phase 3 clinical trials
it works slightly different than these 3 but similar
it removes the amyloid also but probably with slightly more side effects
im sure it will get fda early approval once this phase 3 study is done

then
we will have 3 drugs to chose from
im not sure which one i will chose but i will watch this new one as it moves through the clinical trials and the fda approval process

here is a review article of the 3 drugs from alzheimers weekly

i just dont want that stuff that amyloid to reaccumulate in my brain

my suggestion is if you are early diagnosed with mci due to alzheimers or early alzheimers that you consider using one of these drugs
they may slow down memory decline by up to 30%

the major risk is aria or amyloid related imaging abnormalities manifesting as edema or bleeds
the instance is low and most resolve and the meds can be continued
i had no aria
those with the apoe4/apoe4 gene are at highest risk for these bleeds
an mri an apoe4 genetic test and an amyloid pet scan or a spinal tap for amyloid or tau are required to be screened before receiving one of these drugs

also during treatment regular mris of the brain are done to rule out aria

the only other thing that can be offered to you is aricept to slow down symptoms and to do all the healthy things one needs to be doing
then
sit and wait

if you wait too long and let the disease progress then these 3 drugs dont work

for me i prefer to be proactive so i sought treatment

will it make a difference 
i may not ever know
but i have no regrets in doing it

if you are in the santa barbara area join us for our walk to end alzheimers at the link below
or
join a walk where you live
here is the link to our team organicgreendoctor to join or donate 
see you on saturday november 16th at chase palm park 

the organicgreen doctor

organicgreendoctor: my story revisited #211-my essence revisited

organicgreendoctor: my story revisited #211-my essence revisited: MY STORY REVISITED #211-MY ESSENCE REVISITED my essence hasnt changed much since i wrote this old blog in 2015 the interviewer caught my ess...

my story revisited #211-my essence revisited

MY STORY REVISITED #211-MY ESSENCE REVISITED

my essence hasnt changed much since i wrote this old blog in 2015
the interviewer caught my essence in the article she wrote
i would say it was one of the better interviews that i have had since i started my journey with the disease

you can always tell an experienced and skilled interview when its happening
the four interviews i have done where the interviewer was skilled was this one the one done by the austin american statesman not long after i was diagnosed the one done by the ny times about my involvement in the aduhelm clinical trial and one done not long after i moved to santa barbara by a now deceased reporter for the local santa barbara paper which has since closed

the article mentioned by the blog below was set up by a former patient who worked for the local independent newspaper
The reporter did a great job with the interview
here is the link to that article

__________
10-10-2024
ALZHEIMERS NEWS-MY ESSENCE

over the last 5 years since my diagnosis i have been
interviewed multiple times by newspapers and television
and radio reporters
but last week i was interviewed by a reporter from the
above newspaper

here is the link to their website
the article will be available online soon
its now available in paper form at local businesses
and at their office

when i got home i told my wife she
that was one of the best interviews ive had of all
that ive had done

the reporter seemed to know what questions to ask
she when i read the newspaper article
caught
my essence

maybe at my funeral one day
hopefully years from now
someone will read that article aloud to all who attend

this my friends i want them to say
is the essence of
the organicgreen doctor

he did good

for others

special thanks to ka for setting this all up

today i do another alzheimers talk in a town nearby
called burnet
it is to the local state agri extension clubs annual meeting
there will about 50+ folks attending today

i like doing these talks
like in the above article
i talk about how i was diagnosed
my family history my personal history
what testing should be done for memory loss
what new testing is available now and will be available soon
what a person can do to maybe slow things down
what new treatment studies are going on
what links for more information
then the best part
i answer questions from the audience to hopefully give them
answers they are not finding elsewhere

yes
thats my essence alright

here are some slides from my presentation for you
and those who attended it today


those above the question marked tests are the ones
that most need to have to have a complete memory loss workup
those who havent had those may not have had a complete
evaluation


these things above may slow down the development
of memory loss
some think in some cases they may even prevent
memory loss
you should be doing all this anyway
all your life
i attribute my improvement to doing all of these
aggressively
and
taking my aricept (donepezil)


these are treatment studies that are ongoing now
they are looking for study subjects
the top three are on folks who have no symptoms
the colombian study is on a family with the dominant alzheimers gene
who have no symptoms
all three are using one of the new alzheimers vaccine
the sniff study is using nasal insulin
the bace inhibitor is a pill that inhibits an enzyme that
produces the bad beta amyloid

folks they are looking for volunteers
go to www.alz.org  or click this link


the www.alz.org is the best website for finding out information
for patients families caregivers or medical providers
the texas capital website is the local chapters
they can provide a lot of information for whats available
locally
the clinical best practices is about what workup and treatment
is available
its from the texas health department website
the last is the research center where i go
which by the way is where i will be week from today


__________
the initial workup for memory loss is the same except now if needed an amyloid pet scan is done to confirm the diagnosis of alzheimers disease or a spinal tap for amyloid and tau or soon a screening alzheimers blood test will be done

for treatment
its doing all the healthy things one needs to be doing
adding aricept or donepezil early on in the disease
then
consider taking infusions of leqembi or kisunia that may slow down symptoms by about 25-30%
they work better if started early in the disease
there will be more treatments available in the future

these studies i mentioned are mostly done
the a4 study showed the drug they used didnt help
i am not sure about the apoe4 study
the colombian study showed the moncolonal antibodies didnt work in early onset genetic alzheimers disease
the sniff study wasnt done 
the bace inhibitor study showed the bace inhibitors didnt work but instead made it worse

the clinical trials for aduhelm leqembi and kisunia showed these monoclonal antibodies may help slow down symptoms
i am glad i did the aduhelm clinical trial study treatments 
having all the amyloid plaques removed makes me feel better knowing its all gone
i just hope it helps slow down this disease

the alzheimers association website www.alz.org is still the best website to get information on alzheimers

i still do a lot of volunteering doing the same number of hours per week
i mainly just volunteer in our community garden as the garden manager and as the chair of the garden committee

so when i die
i want folks to say 
he gave back
he educated us about alzheimers and gardening

makes my life complete

if you are in the santa barbara area join us for our walk to end alzheimers at the link below
or
join a walk where you live
here is the link to our team organicgreendoctor to join or donate 
see you on saturday november 16th at chase palm park 

the organicgreen doctor

organicgreendoctor: alzheimers news-control this risk factor

organicgreendoctor: alzheimers news-control this risk factor: ALZHEIMERS NEWS-CONTROL THIS RISK FACTOR most if not all of us know what our blood pressures are look at your numbers if its not around 120/...

alzheimers news-control this risk factor

ALZHEIMERS NEWS-CONTROL THIS RISK FACTOR

most if not all of us know what our blood pressures are
look at your numbers
if its not around 120/70 your blood pressure may be putting you at risk for getting alzheimers as you age
if you are middle age or younger and your numbers are above that you are at a higher risk for getting alzheimers as you age

in a recent study those with untreated high blood pressure had a 36% increase risk of developing alzheimers as compared to those who who had normal blood pressures or were treated for high blood pressure

i cringe to remember that there was a time that we didnt treat folks blood pressure until it was 140/90
now its 120/70

high blood pressure also raises your risk for stroke and cerebrovascular disease
its easy and cheap to control
it can also lead to vascular dementia

nowadays its so easy to treat
there is really no reason for anyone to have high blood pressure at any age

so attack this risk factor
control your pressure
reduce your risk for alzheimers disease and for vascular dementia

so after you control this risk factor
its the easiest one to do
then start attacking the other risk factors one at a time

just dont wait years to do it

if you are in the santa barbara area join us for our walk to end alzheimers at the link below
or
join a walk where you live
here is the link to our team organicgreendoctor to join or donate 
see you on saturday november 16th at chase palm park 

the organicgreen doctor

organicgreendoctor: garden news-christmas lima beans

organicgreendoctor: garden news-christmas lima beans: GARDEN NEWS-CHRISTMAS LIMA BEANS these are my most favorite beans to eat they are christmas lima beans they are called christmas lima beans ...

garden news-christmas lima beans

GARDEN NEWS-CHRISTMAS LIMA BEANS

these are my most favorite beans to eat
they are christmas lima beans
they are called christmas lima beans since you plant them in april and you harvest them near christmas
i have noticed here in santa barbara that they are usually ready for harvest in october or november
i guess that would make them halloween lima beans or thanksgiving lima beans

when we lived in texas it was usually late november or december when we harvested them depending on when it got cold

i had never heard of christmas lima beans until a former arkansas friend living in austin told me about them
i ordered some and planted them and also cooked them 
i have planted them every year since then probably around 15 years

the place i ordered the original seeds is linked below

rancho gordo heirloom beans

i ordered a pound of them and ate them cooking them similar to the recipe on the link above
the flavor to me is like it has a hammy flavor
i have cooked them with just water and nothing else and the flavor is still good

the beans in the picture above are from the original purchase from rancho gordo years ago
well the beans would be their great great great .... grandkids

i have planted them here in my garden in santa barbara for the last 7 years so they are getting acclimated to our community gardens environment

it was interesting during the pandemic that most of the beans including the christmas lima beans were all sold out on the rancho gordo website

we use these christmas lima beans along with other beans to sort out in our seed session of our fall harvest program
the kids say this is their favorite seed

here is how i cook them
you can cook them like you would any other bean like pintos

i soak them overnight in water
i place them the next morning in a crockpot with just enough water to cover them
later when the beans soften up i will add chicken broth or vegetable broth or chicken bone broth
i use whatever i have

then
i add things from the garden like kale malabar spinach purslane amaranth garlic onion leek tomatoes collards and herbs like oregano thyme rosemary
i seasoned it with salt pepper smoked paprika cumin and hickory or mesquite liquid smoke
i add either olive oil and or butter

i then let it slow cook until the beans are soft but not mushy

the christmas lima beans will lose that calico color and will puff up and turn brown or tan
the beans soup is also brown and it has a ham flavor to it

we i mean my wife she will cook a pan of iron skillet cornbread to go with this 

1 nice bowl of christmas lima beans with a piece of cornbread well maybe 2 or 3 pieces makes a fine meal

its well worth the 6-7 months it takes to grow them

heirloom christmas lima beans heirloom is definitely my favorite bean

the organicgreen doctor

organicgreendoctor: my story revisited #210-more momentum

organicgreendoctor: my story revisited #210-more momentum: MY STORY REVISITED #210-MORE MOMENTUM i did my first walk to end alzheimers in 2011 this next month i will be doing my 14th year of these wa...

my story revisited #210-more momentum

MY STORY REVISITED #210-MORE MOMENTUM

i did my first walk to end alzheimers in 2011
this next month i will be doing my 14th year of these walks
i skipped two years due to the pandemic
most of these events i have done a few minutes talk on my story for the audience
yes i cry every time and yes many in the audience cries also

this year if i talk at the walk i will be more positive
we have come a long way since 2011 and even since i wrote this blog below in 2015

the article linked in the old blog below is well written

i can feel even more momentum picking up now
_________
09-28-2015

MOMENTUM
i can feel it building
this momentum to find a cure and treatment
im bleeding purple this morning when i cut myself

i felt it last week when i did my presentation on
alzheimers to a large crowd
after talking for 30 minutes
i let them ask me questions that they wanted answered
my oh my
they asked a ton of questions
in fact i told them
ill stay here until they run us out
or
until there are no more questions asked

i noticed that people dont get their answers from
their medical providers
who are either too busy
or
may not know themselves

many of the questions should have been answered
by the providers

why dont they or why dont we provide those answers

in reviewing comments from the attendees
they felt like they got some needed answers that day

here is a newspaper article on the presentation

then this weekend
we did our first of our walk to end alzheimers in williamson county
quite a success it was

these walks mean a lot to people who have had family
with the disease
i always take a pause
thinking of
my mother my dad my younger brother and older brother
all affected by this disease
as i walk i usually will strike up a conversation with other walkers
sometimes ending in teary eyes as they remember their
loved ones

this walk just seems to feel good
its the fifth time we have done this walk
its getting bigger and bigger each year

this year there were 650+ walkers
raising over $65000 for alzheimers research and education
almost all this money goes to that cause

there is a lot of youth at this walk
which we need
an influx of youth
they are the silent ones in the alzheimers battle
they lose their parents grandparents aunts and uncles
to this terrible disease
you know it must bother them a lot
many dont understand why

there seemed to be a lot of energy at this walk
that makes that momentum move forward
on to the next one
on to a cure

a weekend well spent
_________
as i am getting ready to walk in the walk to end alzheimers here in santa barbara in about a month i was thinking about all the gains we have made in the alzheimers world since i was diagnosed in 2010

we now know that doing all the healthy things one should be doing well documented in my old blogs that one can slow the disease down or maybe even prevent it if done over a lifetime

taking aricept or donepezil early in the disease process may delay the progression of symptoms and maybe allow you to live longer

there are 3 new drugs called anti amyloid monoclonal antibodies that have been approved by the fda
aduhelm my drug is off the market but its cousin leqembi is available now for treatment in early alzheimers
kisunia another one is approved for use also

these drugs may slow down symptoms by as much as 30%

doctors can now more definitely diagnose alzheimers by using exam and history labs memory testing mri then amyloid pet scans and soon to be available alzheimers blood tests

so when you are told you have it they arent just guessing any more 

so they can accurately diagnose you
start treatment if its caught early enough
then
soon in the near future also treat your tau tangles that accumulate and the inflammation that occurs

hopefully all of this will slow the disease down

for me
i am waiting to see when i need to be retreated again
science doesnt know for sure when to retreat
when they decide i plan to retreat

if you are in the santa barbara area join us for our walk to end alzheimers at the link below
or
join a walk where you live

the alzheimers association is the reason we have made good progress on this disease through its research lobbying and education programs

here is the link to our team organicgreendoctor to donate 
see you on saturday november 16th at chase palm park 

the organicgreen doctor