organicgreendoctor: alzheimers news-why i am better

organicgreendoctor: alzheimers news-why i am better: WHY I AM BETTER getting aduhelm infusion at ucla this fall i was interviewed via zoom by deborah kahn from being patient.com she was intervi...

alzheimers news-why i am better

WHY I AM BETTER

getting aduhelm infusion at ucla

this fall i was interviewed via zoom by deborah kahn from being patient.com
she was interviewing me about my finding out my apoe4 apoe4 status
if you are in the alzheimers world i suggest you follow her website

apoe 4 is called the late onset alzheimers gene
if you have the single apoe4 ie heterozygous your risk of getting alzheimers is about 5 times increased
if you get the double version apoe4 apoe4 or homozygous your risk of getting alzheimers is about 12-20 times

you can partially overcome that gene by living a healthy life doing those things mentioned below

after we talked about my homozygous apoe4 status she asked me a lot about my story 
the more we talked the more she was interested
she asked if i would write two articles to submit for possible posting on their site 

one i wrote about here in this blog called why i did it

the second one she wanted me to write was

what finding out my genetic status meant to me

several things happened at the same time
i find out i had mci that has turned out to be due to alzheimers disease while taking a neuropsychological exam as part of the normal control group of an alzheimers research study called adni 2 or alzheimers disease neuroimaging imitative 2 it was found i had memory loss greater than it should be for my age and degree of education
i was advised to see a neurologist who gave me my diagnosis and also put me on aricept or donepezil

at the same time i had a spinal tap for amyloid and tau plus i had my apoe4 gene status checked
my spinal tap was compatible with alzheimers disease and my apoe4 was homozygous

my reaction to all of this was overwhelming at first
i was sad i cried a lot 
i always knew i would get alzheimers and knew when i did have any symptoms i would retire from practicing medicine
i got chills and got sweaty when i took my memory test
i cried and i wanted to be alone for a while
each of these results just piled on top of each other

i didnt really understand what the apoe4 gene meant then but now i do
i felt it getting the results was another nail in my coffin

here i am 14 years later cognitive normal
my moca test and mmse tests are normal and have been so for the last few years.

knowing what i know now i would not have been surprised since i have such a strong family history of alzheimers and have a terribly high cholesterol level well controlled on meds now

now i know i could have overcame this apoe4 gene if i had been even more aggressive with my health when i was younger

specific lifestyle changes i made in response to knowing i had apoe4 homozygous

after my diagnosis of mci and getting my amyloid and tau results and getting my apoe4 results i got more aggressive with my health
i was borderline hypertensive so i started blood pressure meds
i got on a more aggressive statin regimen to keep my ldl cholesterol below 100
i changed my diet to a mind diet 
i say i am a 90% vegetarian
i take aricept which interferes with my sleep at night so i take a daily afternoon nap or 1-2 hours
i stay active mentally socially and physically
i dont smoke and i dont drink alcohol

why i believe i am cognitively healthy 14 years after my mci diagnosis

i started aricept or donepezil early in my diagnosis probably earlier than most people do
aricept slows down symptoms but also folks who take it early on tend to do better with their symptoms over time and also live longer
i follow all those healthy things i listed above

in 2016 i was accepted into the biogen aduhelm study where i received 18 months of placebo then 34 months of aduhelm infusions
aduhelm is a monoclonal antibody against amyloid and given as an infusion it removes amyloid plaques from the brain

at the beginning of the study i had amyloid plaques on my amyloid pet scan
after completion of the treatments the measurable amyloid plaques were not present on my final amyloid pet scan

all these things added up are why i feel like am doing well 14 years after my diagnosis
i am glad i was diagnosed early and am aggressive at taking care of my health and was able to access clinical trials early for treatment

i am waiting now to find out what to do next

the organicgreen doctor

organicgreendoctor: its dark out there

organicgreendoctor: its dark out there: ITS DARK OUT THERE the other day it was dark and dreary outside i had just gotten up from a 2 hour late nap after not sleeping well the nigh...

its dark out there

ITS DARK OUT THERE

the other day it was dark and dreary outside
i had just gotten up from a 2 hour late nap after not sleeping well the night before
i felt groggy headed and tired feeling

someone said to be this time change makes me almost feel depressed and tired all the time
i agreed i said
especially on that day

the time change for daylight not savings time i dont like

now i like the extra sunlight in the morning
every morning around 6ish the sun peeps over the condo roofs and floods into our living room and dining room
its like a jolt of expresso when the sun hits me in the face
i like to stand up and open my arms and close my eyes so i can feel the warmth

I can feel my pineal gland kicking in up in my brain

sadly 
after my nap
thats all gone since it gets so dark so early 

my body just cant seem to get adjusted to the time change
i still wake up at the right time its just the clocks says its an hour earlier

i was feeling sad and bummed for myself suffering so
until 
i read this article about what its like to live in this alaskan town
utqiagvik
no thats not me mistyping thats the way its spelled

it is 330 miles north of the artic circle
it gets 2 month of total darkness in the winter
the sun sets on november 18th and rises again on january 22nd
for only 48 minutes
but
then they have nothing but sun from may 11 to august 19th

im sorry i dont think i could survive living there
my pineal gland wouldnt be activated for several weeks at a time
how bad must they all feel during that dark 2 months

I wonder if those 5000 folks who live in that town all are on antidepressants most of the year
they probably add it to the drinking water along with the fluoride

we thought we had it bad during daylight not savings time
i guess when we think things are bad
they could be worse
i dont plan on going to alaska either in the winter

i still dont like daylight not saving time

the organicgreen doctor

organicgreendoctor: alzheimers news-why so high

organicgreendoctor: alzheimers news-why so high: ALZHEIMERS NEWS-WHY SO HIGH this graph above is from the cdc and a newsweek article linked here if you click on the cdc site or the newswee...

alzheimers news-why so high

ALZHEIMERS NEWS-WHY SO HIGH

this graph above is from the cdc and a newsweek article linked here
if you click on the cdc site or the newsweek article there is an interactive you can click on to see the numbers from each state

the alzheimers association color is purple
on the map the darker the purple the higher the death rate from alzheimers

why is it high in washington
if you look across the deep south almost all of the southern states have a higher rate
why
poor health outcomes like obesity hypertension diabetes poor diet poverty and lack of health care
mississipi ranks number one 
maybe they should be spending more money on their health than on their highly ranked football team
priorities i guess

when it comes to your health you get what you pay for

interesting is that these southern states have the highest rate of alzheimers ie for older folks and they also have the highest rate of maternal and infant mortality 

both due to poor health systems

texas eg has the highest rate of maternal and infant mortality
worse even more than some third world coundtries

they are killiing off folks at both ends of the life cycle
doesnt have to be that way
texas is not a poor state
there is no excuse

washington is higher i think because like utah and idaho they have an older population 
the older you get the increased chance you have to get in alzheimers

the last several years there has been lots of research that shows that addressing ones health and ones communitys health can address or lower the incidence of alzheimers

eating a healthy diet as early in life as possible is important
the mind diet is a good place to start

avoiding obesity 

exercising and staying active mentally and socially

controlling your blood pressure starting early in your middle age
controlling your cholesterol taking medication to do so if needed

controlling anxiety stress and depression

learning to meditate in some way 
i do gardening

getting adequate sleep 
sleep is when your body cleans out debris in your brain that left there accumulates over time

dont smoke
dont drink or drink limited amounts

doing these over your lifetime can decrease the incidence of alzheimers by almost 50%
that works better than aricept or donepezil or leqembi infusions work

additionally it also helps prevent strokes and heart attacks

today as i sit here thinking about this as we approach our 14th year of doing walk to end alzheimers i see a lot of progress being made in alzheimers treatment
but
like it was in 2010 when i was diagnosed
the best treatment plan is still even with the new moncolonal antibody infusions like my aduhelm or leqembi or kisunia and even the newer treatments in clinical trials
it is doing all those healthy things as early in like as possible
it will always be that way probably

take heed will you

tomorrow as i do my 14th year of these walks i look forward to just being a walking participant and walk with others who are affected by this awful terrible disease

wherever you live
look at that map above
click on your state
do what you can to help slow down this disease

look for a walk where you live and participate in it
the alzheimers association is the main reason we are making progress with this disease
support them
www.alz.org
all you need to know about alzheimers is at that link

we will be thinking of my mom my younger brother and my dad
all who suffered with this disease
and
of course me who so far has it slowed down 



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: its time to change it

organicgreendoctor: its time to change it: ITS TIME TO CHANGE IT i voted back in october via mail as soon as my ballot came in the mail i filled it out and mailed it within a few days...

its time to change it

ITS TIME TO CHANGE IT

i voted back in october via mail
as soon as my ballot came in the mail i filled it out and mailed it
within a few days i got a notice via text that it was received and counted

or 
was it
what i mean did it really count
since the vote really it seems by the millions spent in those important got to win states counts only there

all that money and political visits and famous folks campaigning like crazy in those few states while ignoring almost all of the other states

heck texas only got the presidential candidates once
pennsylvania got them several times a day for what seems like weeks

that all doesnt seem right

i talk to folks who came here from other countries and they sort of smile and shake their heads when we talk about our electoral system

i understand how it works 
i understand its history and why it was set up that way
a compromise was made
we all suffer from that compromise 

i recommend that we use the popular vote so that whoever wins the most votes in the election wins the election
you know the one person one vote rule

finally this year the republican candidate won the popular vote
george w was the last to do that

to the one that gets the top votes they get the job

man that would make the candidates go everywhere wouldnt it

there seems under the electoral system to be too many places where things can get all jammed up
lets remove that log jam and switch to the rule
whoever gets the most votes win

i think it was set up so the common man really didnt get to decide in the beginning
remember back then women couldnt vote
only property owners voted
blacks were not citizens
only an elite group got to pick the winner

the presidential election needs to be like we do for mayor governor senator house of representative school board tax collector etc

well you name it every other office

yes tis time to change now that the republicans showed they could win the popular vote as well as the electoral vote

here is a good explanation of the us presidential electoral system 

lets change it

the organicgreen doctor

organicgreendoctor: alzheimers news-i will do it

organicgreendoctor: alzheimers news-i will do it: ALZHEIMERS NEWS-I WILL DO IT that is me speaking last year at the walk to end alzheimers  in four years i want to be able to vote again and ...

alzheimers news-i will do it

ALZHEIMERS NEWS-I WILL DO IT

that is me speaking last year at the walk to end alzheimers 
in four years i want to be able to vote again and be able to know that i voted again
i want to be able if asked to speak at the 2028 walk to end alzheimers

to do this
i have to
maintain my healthy living like i have been doing
continue taking my aricept or donepezil to slow down symptoms
then
look for other things that may come available to slow down this disease

i may have found one
maybe

in 2016 i had an amyloid pet scan that was positive for amyloid plaques in my brain
this is the hallmark of alzheimers disease
if you have alzheimers you will have a positive amyloid pet scan

i was accepted in the biogen aduhelm or aducanumab treatment study in 2016

i started infusions for 18 months that turned out to be placebo
the study was delayed twice once by the pandemic and once by problems with the study 
it was eventually restarted and i received 34 months of aduhelm infusions

in the fall of 2023 my last amyloid pet scan was negative for amyloid plaque

in February of 2024 i had a final interview and studies for the biogen aduhelm study 

so the goal was to remove the amyloid plaque
it aduhelm did its job

these drugs called moncolonal amyloid antibodies slow down memory decline by about 25-30%

my drug aduhelm was removed from the market in favor of its sister drug leqembi which showed slightly better results and had all its initial clinical trials completed 

so leqembi is approved for use in mild cognitive impairment due to alzheimers and for early alzheimers
the sooner you take it the better it works
another similar drug kisunia also was approved

now here i am 1 year after having all the amyloid plaque removed from my brain
what do i do now
wait

well no i dont l like to wait

so enter this thing below

this is the leqembi auto injector
it probably will be approved by the fda for administering leqembi

when i got my infusions it was a 3 hr drive to ucla and a 3 hr drive home
a visit to see the neurologist to approve the infusion
a wait for the meds to be mixed up by the pharmacist 
an hour infusion time to get the meds
total time 9 hours

enter auto injector
time involved 
15 secs to inject
done

if the autoinjector is approved by the fda then folks ie me can give it myself at home eventually

they are seeking approval by the fda for leqembi to be given as a maintenance injection once a week to keep the amyloid plaque from reaccumulating

i am anxiously waiting its approval

here is a review article about this from alzheimers weekly

my thoughts
ill definitely 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: my story revisited #212 -why we walk

organicgreendoctor: my story revisited #212 -why we walk: MY STORY REVISTED #212-WHY WE WALK this is a picture of my first walk team for the walk to end alzheimers in austin in 2011 it was the first...

my story revisited #212 -why we walk

MY STORY REVISTED #212-WHY WE WALK

this is a picture of my first walk team for the walk to end alzheimers in austin in 2011
it was the first walk after i was diagnosed
i will have done 13 years of these walks this month

the flowers we carry at these walks have the same names on them 
there thank goodness have not been any additions 
well maybe my name could be added

i wrote this to ms b to tell her about my younger brother who died with alzheimers
plus my mother who died with it and my father who probably had it when he died

this year we will do the local walk here in santa barbara
this year i will not be talking at the open ceremonies like i have done for years
i look forward to it 
just savoring the moment with my family
i promise to cry
__________
10-12-2015

DEAR MS B-YOUDVE LIKED HIM


ok ms b this will be the last sad blog i write to you
well i hope it is

you have two ancestors named joe
both are not with us now
both taken down by two different diseases
one taken by an als like disease
the other taken by alzheimers disease
one your other grandpa
the other your great uncle

now your grandpa joe i only met once
even though he was ill you could tell he
was a powerful man
powerful in the way he carried himself
but
compassionate

i wish i could have got to know him better


the other joe
your uncle joe
was also compassionate
had a great smile
worked for years as a fireman then later a deputy sheriff
loved his family like the other joe did
loved life like the other joe did
loved hunting and outdoor stuff the other joe loved the outdoors

ms b he had two daughters and two granddaughters
so he knew about raising girls

now this weekend ms b
we will be honoring uncle joe
at a walk to end alzheimers in little rock
walking with his familys team
#joe nash

we will be walking to raise money for the
alzheimers association to use for research and education
on alzheimers disease

you see ms b
we are getting close real close to finding a true treatment
and a cure
real close

when we walk this weekend these are the four folks we
will be walking for

nell-your great grandmother a nurse
charles-your great grandfather a minister
joe-your great uncle joe taken like your grandpa joe much too
soon before their lives were complete

ms b uncle joes wife 2 daughters 1 grandson 2 granddaughters
will all shed tears this weekend as they walk
as will his friends and siblings that are walking
and
those who cant be there will be thinking of him and his
family saturday morning

yes ms b
your gma and i still cry every time we do this
walk for uncle joe and our other family members
affected by this terrible disease

ms b
if you met your uncle joe
you would have liked him
his smile
his laugh
yes he would probably pinch your cheeks
maybe give you a kiss

yes ms b

youdve liked him
_________
ms b you would have liked him
all kids did
yes
like me 
he would tease you a lot
and
make your smile

this is why we do the walks
to honor these relatives affected by this horrible disease

yes
we are getting closer to a treatment for this disease
lucky for me i was able to receive treatments that may slow things down
which means i may be around a little longer to tease you

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: its a disadvantage

organicgreendoctor: its a disadvantage: ITS A DISADVANTAGE today is election day thank goodness all those political ads will go away sadly those medicare disadvantage ads will take...

its a disadvantage

ITS A DISADVANTAGE

today is election day
thank goodness all those political ads will go away
sadly
those medicare disadvantage ads will take over now until the end of the year
you know the one with folks like joe namath hawking these 
just call this number
we will help you decide
no
they will trick you to decide

ill be upfront here
i have regular medicare that comes right out of my social security check
it gets adjusted based on your income
i have a medicare supplement f i pay $294 a month for 
i have a prescription drug plan i pay 84 cents a month for

I have been on these since 2010 and except for some small copays for meds i have not paid anything extra for my health care

my wife she is on the same plans

she was offered a medicare disadvantage plan with her retirement but she opted not to take it

why
when someone advertises like crazy all day like a political ad someone is making money
here is who
the folks selling it to you
the insurace company like humana etc
the doctors
the hospitals
but
who is paying more if they get real sick
its the patient
thats you

some disadvantage plans are better than others

having worked with these plans in the beginning when they first came out
the ones that lost out were the patients
think medicare hmo with all its rules of denying or delaying care

with my non medicare advantage plans ie regular medicare i chose where to go and dont need referrals and have no extra monies i have to pay for care

also 
when they offer you free stuff someone is getting wealthy off of it
its usually at the cost of the patient or the taxpayer

that is why we chose to go with regular medicare and a medicare supplement and a prescription plan that is the best health insurance we have ever been on

know what you are getting when you look at a medicare disadvantage plan

here is a good review article from investopedia on these disadvantage plans
i suggest you read it before you decide what to do

the organicgreen doctor

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