organicgreendoctor: covid 19-you may only get one chance to get it wrong

organicgreendoctor: covid 19-you may only get one chance to get it wrong: COVID 19-YOU MAY ONLY GET ONE CHANCE TO GET IT WRONG  sadly a lot of americans may have made that wrong choice this thanksgiving because of ...

covid 19-you may only get one chance to get it wrong

COVID 19-YOU MAY ONLY GET ONE CHANCE TO GET IT WRONG 

sadly a lot of americans may have made that wrong choice this thanksgiving
because of that choice some of them and their at risk relatives or friends will not get another chance to make another bad choice

by christmas many will be in the hospital many will be in the icu some will eventually be on the ventilator 
then
by mid january many will be attending virtual funerals or should i say their relatives and friends will be
why
they made a bad choice
it was a wrong one

a lot of Christmases got ruined this weekend

a leading infectious disease expert recommended if you attended a thanksgiving event this year you should do a covid 19 test this week and quarantine yourself from any contact with anyone over 65 years old

here in california in sant clara county next to san francisco if you travel from outside of 150 miles from there they are recommending you quarantine yourself when you arrive there
thats where the san francisco 49ers are located
they are not being allowed to even play football there right now
the 49ers will have to go somewhere else to play their next few games
no local sporting events are allowed like colleges or high schools

in los angeles starting today a stay at home order has been placed
our numbers here in santa barbara are climbing multiple times each week
the counties around us have even higher rates

if all 380,000,000 americans got infected with the covid 19 virus
there would be 5,320,000 deaths from covid 19
we will probably be at around 500,000 deaths by mid to late january or early february
well over half of them will be our parents our grandparents our great grandparents

the number of folks from 18-40 who are getting covid 19 are increasing
so is the number of folks in that age range who are being admitted for their covid 19 infections

the mortality rate for children 5-14 is 1.34
deaths per 1000 cases
its a low rate unless one of them is your child

if all 380,000,000 of us americans get the covid 19 vaccines
then
the number of deaths from covid 19 will be closer to zero
if we all dont get the vaccine
then that death number will be much higher
and
the covid 19 pandemic may not ever go away

we are at a critical point in all of this right now
we did not pass the first part of that journey this weekend

the peak thats occurring is only the beginning 
it the peak will only get higher and higher
sadly 
many of you will fall off that cliff
you will miss the exhilaration when we all reach that peak and can slide down the other side of that slope
this will occur when and only when we all get vaccinated

it again is all up to us
wear your mask
keep a safe distance
avoid groups
do no not needed travel
get the vaccine when it gets here

if you dont get the vaccine please stay away from the rest of us

its expected that many employers will require their employees to be vaccinated

it will be a bumpy bump ride for the next 2-3 months
if we all get there will be determined by how well we acted to protect ourselves and others

my hope is next thanksgiving we all get to have our thanksgiving get togethers safely
and
that all our loved ones will be there to enjoy it with us

the organicgreen doctor

organicgreendoctor: my story revisited #67-alzheimers quiz

organicgreendoctor: my story revisited #67-alzheimers quiz: MY STORY REVISITED #67-ALZHEIMERS QUIZ   over the last 10 years since i was diagnosed i have recommended to folks that they fill out the alz...

my story revisited #67-alzheimers quiz

MY STORY REVISITED #67-ALZHEIMERS QUIZ 

over the last 10 years since i was diagnosed i have recommended to folks that they fill out the alzheimers quiz thats linked here and below 
they had usually asked me about a loved one that they were worried about having alzheimers disease

this alzheimers quiz is easy to do 
you just answer the questions yes or no
then
score it yourself to see where the loved one scored
if they are not in the normal range i always recommended they be seen for a memory evaluation

i scored myself on the quiz and i score a zero which is normal

i looked back at an acquaintance that died with alzheimers disease
i scored that person this morning based on what i noticed back then when i recommended to their spouse that they have that person evaluated

they scored a 6 which would put them in the category of
    memory loss may be an early warning of alzheimers

i also scored that person like they were just a couple of years later
they scored a 16 which put them in the category of
     alzheimers may have already developed

that person within a month of my visit was diagnosed with alzheimers disease

i recommend that folks fill it out on their loved ones
score it
if its abnormal then have that person evaluated for memory loss
bringing a copy of the quiz with them and you to their office visit
make the office visit only for memory loss

this quiz puts in black and white what you probably already know about your loved ones 
but
you and they may not want to admit it

if the aducanumab i am about to restart next month turns out to be slowing down my disease then having an early diagnosis allowed me to be aggressive about my health and to began this possible treatment study

dont be afraid to get your loved one diagnosed
__________
06-22-2012
ALZHEIMERS QUIZ
a recent study showed that the 21 question alzheimers quiz has
a very good diagnostic accuracy
its one you can fill out for a family member or friend and hand
it to their doctor
remember many times early on people can be having problems
that in a few minutes of a doctors office will not be recognized

dont be afraid to be aggressive and do this for their doctors
i like others feel the earlier you know theres a problem
the better

it takes 3 minutes to complete and is easy to interpret
you can probably do it on yourself
it will pick up most cases of mild cognitive impairment and
almost all cases of alzheimers disease

now a days if you find a positive alzheimers quiz
you can do a neuropsychological test and
do screening labs and
do a beta amyloid pet scan (first available commercial one
is amyvid)
if the labs are negative and the neuropsych test is positive and
the amyvid scan shows there are significant amyloid deposits
then you or the patient probably have alzheimers disease

one thing ive told people who ask is dont be passive about all
of this with family members or friends
dont be afraid to hurt their feelings
get them evaluated
treatment available like aricept (donepezil) can slow things down
and
the social side of this terrible disease can be attacked early
there is a window of time between early diagnosis and full blown
disease that can be a time to be enjoyed by the patient and their
family
like someone with terminal cancer who is on chemo to slow the disease
down so that they can have more time with their family

dont be shy about getting evaluations done
 __________ 
i dont ever regret knowing my diagnosis years before most people do 
its been a good ten years

the organicgreen doctor

organicgreendoctor: it doesnt matter

organicgreendoctor: it doesnt matter: IT DOESNT MATTER  now i know my voted counted cause i got a text telling me it got counted i was worried though that many of you wouldnt get...

it doesnt matter

IT DOESNT MATTER 

now i know my voted counted cause i got a text telling me it got counted
i was worried though that many of you wouldnt get your votes counted even though you had legally voted
now it seems thanks to mostly state republican election folks that did what was right and counted the votes
their standing up to the national pressure to disallow votes took a lot of courage
it gives me faith that maybe the system does work

i do think we need more safeguards put in though to cover the loopholes in how we do things

i enjoy talking politics with my historian brother
he can give me perspectives from past elections and from when the founding fathers made their decisions on how our system was set up 
he is a walking talking encyclopedia

it doesnt matter if the president doesnt concede the election
the system will move on without him

joe biden didnt defeat trump
trump defeated trump
folks didnt necessarily vote for biden they voted against trump

i heard a republican governor say that trump attacking mail in voting probably cost him the election
a lot of his voters didnt do mail in voting but were afraid to go to the polls because of the covid risk

i use to tell my wife she and my historian brother that if trump had acted not like your crazy uncle and lied so much and all the other weird stuff he did if he had acted right he would be a two term president 
but
instead well 80 million folks voted against him 
although under different circumstances many of them would have voted for him
like they did in 2016

i think we well most of us want a different approach to governing

more like it use to be
a fairly normal acting president that we and the rest of the world can respect

i think we have that in our president elect

i do dread the attacks that will be coming
i expect the republicans will spend a lot of time attacking the vice president elect since she will likely be their opposition for president in 2024
look for racist and sexist attacks to occur
the democrats will attack whoever seems to be the front runner for the republicans

it will never end i guess 

politics is nasty and i guess it always has been and will be

but at least my vote counted and so did yours

the system worked like it was suppose to work
just like in 2016

the organicgreen doctor

organicgreendoctor: covid 19-a sad thanksgiving story

organicgreendoctor: covid 19-a sad thanksgiving story: COVID 19-A SAD THANKSGIVING STORY this story i am about to tell doesnt have to happen this thanksgiving this story i am about to tell probab...

covid 19-a sad thanksgiving story

COVID 19-A SAD THANKSGIVING STORY

this story i am about to tell doesnt have to happen this thanksgiving
this story i am about to tell probably doesnt happen next thanksgiving
but
sadly it will multiple times this thanksgiving

the positivity rate is the percentage of covid 19 tests done that are positive
here are some rates for different areas
mississippi 86
wyoming 77.2
south dakota 48.2
texas 23.4
arkansas 14.5
california 6
new york 2.9
santa barbara 1.9

up to 15% of covid infections require hospitalizations

in sweden where they dont really do anything 90% of the covid 19 deaths are in the elderly
a form of euthanasia of the elderly 
they have the worst statistics in europe
they well are sort of what south dakota is doing
note south dakota is the worst place to be in the world right now for covid 19 infections

a negative covid 19 pcr nasal swab just means that you have a negative covid 19 pcr nasal swab at one point in time
even if its negative you still may have covid 19 since it has a false negative rate of 10-20%
the quicky covid 19 tests are less accurate
their false negative rates can be from 20-50%
so these tests can give you a false sense of security 
a slight pun there

you can walk out of the testing site and get infected anytime

to be safe you should do a covid 19 pcr nasal swab two weeks before thanksgiving

then quarantine yourself for two weeks

then
when you get to where you shouldnt be going you should quarantine yourself for one to two weeks 
then get another covid 19 pcr nasal swab
if its negative then you do your thanksgiving visit you shouldnt be doing anyway

i know

there is not time to do all of this 
thats the point 

1 in 5 of yall will travel to visit someone for thanksgiving
even though the cdc and folks are asking you not to do it
why 
just read this thanksgiving story below i wrote to illustrate what could happen to your family

the names and locations have been changed to protect the innocent people who got infected

jane doe a 20 year old premed student at the university of south dakota decided the monday before thanksgiving that she would fly home to spend with her parents and family in santa barbara
she was not ill so she got a covid 19 nasal swab pcr that was negative
see above for what that means
remember one half of the covid 19 tests being done in south dakota are positive

after testing she goes to a bar to have a drink with friends before she flies home
unmasked since they dont believe in that in south dakota
she didnt know it but her good friend who was there had covid 19 but had no symptoms
that sat at a small table together laughing and singing having a good time

so she left the worst place in the world for covid 19 to see us where we have one of the lowest covid 19 rates

the next day she got on a plane with a mask on 
she had to change planes to get to santa barbara
the lines at tsa were crowded and everyone was too close for comfort

she arrived eventually to santa barbara where she was picked up by us her parents
we told her she had to wear a mask all the time even around us and had to quarantine the next few days until thanksgiving

at the thanksgivng meal were her two parents that were in their late 60s
her elderly grandparents who were in their mid 80s
a nephew who just had a transplant 3 months ago
an uncle who had finished chemotherapy and radiation a year ago for cancer
an uncle who was obese had hypertension and diabetes
two younger than her teenage siblings

we all had a good time
she left on sunday to go back to school on monday morning

she called us on tuesday she was running fever coughing had body aches
she was covid 19 pcr positive

alas she infected us all

about mid december all ten of us got sick

by christmas day i was in the hospital in icu
by mid january i was on the ventilator and later died
my wife she did get to kiss my forehead before i died

my wife she also ended up in the hospital in icu but later was discharged but still has a lot of residual damage to her lungs and her heart

janes two grandparents both died around the time i did ending up on the ventilator right before they died
they didnt get to say goodbye to each other

janes uncle also ended up in the hospital on all of those meds trump got
he recovered without residual symptoms

janes other uncle ended up in the hospital on christmas day 
he was eventually discharged on home oxygen

janes nephew who had the transplant spent a few weeks in the transplant hospital but has recovered

janes younger siblings were quarantined for two weeks
they both tested positive though for covid 19

so 
when you think of traveling to visit your at risk family this thanksgiving

please think about this story i just wrote

it is insane to not be safe
within a month they will start giving covid 19 vaccines that are 90+% effective to front line people 
then eventually to all of us
for my wife she and i we hope to get it maybe late spring or early summer

for those who dont plan on getting it
thanks for not helping us all out
i hope you have trouble sleeping at night for not doing your part

we both look forward to a family thanksgiving next year

so
its all up to us now to make this covid pandemic all end

the organicgreen doctor

organicgreendoctor: alzheimers news-lancet alzheimers commission 12 mo...

organicgreendoctor: alzheimers news-lancet alzheimers commission 12 mo...: ALZHEIMERS NEWS-LANCETS ALZHEIMERS COMMISSION 12 MODIFYING FACTORS i have written several times about all the healthy things we can be doing...

alzheimers news-lancet alzheimers commission 12 modifying factors

ALZHEIMERS NEWS-LANCETS ALZHEIMERS COMMISSION 12 MODIFYING FACTORS

i have written several times about all the healthy things we can be doing to slow down or maybe prevent the development of alzheimers disease
when i gave my alzheimers talks i usually included a slide with these things we need to be doing 

the lancet is a well respected medical journal from great britain

in 2017 their lancet alzhiemers commission listed 9 things that were modifiable that we could all be doing to slow down the disease
in 2020 that added 3 more things so now they have 12 modifying things to do
here is a link to a lancet article on this 

here are the first nine things then followed by the three new ones

less education
hypertension
hearing impairment
smoking
obesity 
depression
physical inactivity 
low social contact

excessive alcohol intake
head injury in mid life
exposure to air pollution

according to lancet if we could alter these 12 factors we could delay or prevent 40% of the dementia cases

there is no drug available right now that can equal doing this well in treating alzhiemers

if you have a family history or have a fear of getting dementia then start altering these things
and
you may decrease your risk by this much

so i looked at my life and how i did altering these factors over the last 50 years

i did 12 years of public school then 4 years of college then 4 years of medical school then 3 years of residency training
a plus here

i had borderline hypertension for about 10 years
at that time the recommendation was to treat at 140 systolic pressure
then it went to 130 then now its 120
i have controlled my blood pressure well the last 10 years
i give myself a partial check here

i have no hearing impairment just a listening impairment according to my wife she
i give myself a check here

i smoked in my late teens and early 20s for 6 years then quit 45 years ago
so i get a check here

i have never been obese especially now since i weigh my high school weight
a check given

i have never been depressed but if i was this is the year to be depressed
a check here

i have always been physically active doing sports running jogging bicycling gardening etc
a check here also

i have always had a lot of social contact via work and volunteering
check again

i have never been an excessive drinker
check here

i did have a concussion that put me in the hospital when i was around 50
i still dont remember anything about the injury
i remember being in the emergency room and in icu overnight
i remember being post concussive for over a month
i also had a concussion at 13 from pole vaulting and at 15 playing football
i get an uncheck for this one

i lived in reiverside county which was highly polluted during college for 2 years otherwise most of my life i lived where the air pollution was low
here in santa barbara our air is a good quality unless we get a lot of fires
i get a check for this one also

so over my lifetime i have mainly improved my risk factors except for
not controlling my blood pressure for 10 years
and
a head injury at 50 and those two at 13 and 15

so i have done a good job except for those two things to control my risk factors 
what i cant control or alter is 
my apoe 4 apoe 4 gene for late onset alzheimers

i always feel like if i had not controlled these risk factors like i have my whole life then i would have already suffered the fate of my other family members who died from alzheimers

look closely at these things especially if you are in your mid 40s and 50s
i must say its nice to have lived long enough to see ms b being born mr hudson being born and get his kidney transplant and mr nolan being born

its all been worth it adjusting my risk factors

i sure would have missed out on a lot

dont let it happen to you

the organicgreen doctor 

organicgreendoctor: garden news-ms b in the garden owls and onions

organicgreendoctor: garden news-ms b in the garden owls and onions:   GARDEN NEWS-MS B IN THE GARDEN OWLS AND ONIONS ms b feels comfortable in the garden now that she has been coming in here off and on for th...

garden news-ms b in the garden owls and onions

 GARDEN NEWS-MS B IN THE GARDEN OWLS AND ONIONS

ms b feels comfortable in the garden now that she has been coming in here off and on for the last 3 years
she makes herself at home


her favorite if you ask is to stop and chat and feed the chickens
she knows all four of their names
she feeds them kale or bread or swiss chard and like this week she would go around the garden pulling oxalis or sour grass which the chickens love
by doing this she helps weed the garden since the sour grass can take over the garden this time of the year
she didnt know she was weeding the garden

in her kindergarten class she has been studying owls
i am her monitor while she does her online or virtual school 3 days a week and others do the monitoring the other 2 days
yes it takes a village
i feel sorry for the kids who dont have a good support system at home to help them with online classes
i am amazed at how much she has learned so far this year

if you asked her she would say she would rather be in the school for her classes
wouldnt we all want that to be the case
but
we are getting close for that to happen
after this covid year is over


since she was studying owls she wanted to see our new owl box that we put in our garden
it sits in our orchard in front of the  giant pepper tree
we are hoping to attract a owl or two to help keep down our rodent population in the garden 
ie rats mice voles and gophers


ms b and i recently took apart an owl pellet to find what bones were in it
an owl pellet forms when the owl eats the rodent and swallows it into its gizzard
after its all churned up and the nutrition is extracted from the varmint the owl regurgitates the pellet onto the floor of the owl box eventually it will fall to the ground
looking at a guide we determined the owl had eaten a rat
good riddance we both agreed on that

 

this last week we got a shipment of onion plants from dixondale farms in texas
we ordered a mix of short day white and yellow granex and red onions


in this picture i have made holes six inches apart and ms b is dropping in the onion plants
we watered them in with a mixture of fish emulsion and seaweed and molasses to give them a jump start
earlier a few months ago i added a layer of compost and organic fertilizer then forked it into the soil
letting this all sit for a few weeks under a layer of mulch
the soil was dark and rich and moist when we planted the onions

we planted around 80 onions in this 3 ft x 8 ft garden bed

after she planted the onions she then wandered over to where volunteers were getting produce ready for donating to the food kitchens
they had her read the weight on the scales as a practice on reading her numbers

she as usual had a good time in the garden


a few days later i planted around 300 of these onions in this 30 ft bed 
the bed was prepped the same as i prep my own garden bed
these onions should be ready to harvest sometime in late april
the green stalks will fall over telling us its time to harvest them

this will be the third year i have planted these texas onions here in the garden 
they have done well here
they dont get as big as they do in texas
there i would get softball size onions sometimes 
here they are more like big meyer lemon size 

this morning i am adding some of last years crop that we put up in freezer bags into our pot of beans
we chopped them up and placed them in gallon freezer bags

just dont tell these folks here that these onions we plant came from texas 

the organicgreen doctor

organicgreendoctor: my story revisited #66-my friend greg

organicgreendoctor: my story revisited #66-my friend greg:   MY STORY REVISITED #66-MY FRIEND GREG my friend greg died in the final stages of huntingtons disease its a progressive neurological diseas...

my story revisited #66-my friend greg

 MY STORY REVISITED #66-MY FRIEND GREG

my friend greg died in the final stages of huntingtons disease
its a progressive neurological disease that eventually leads to death usually in the awful final stages 
when greg died his brain was intact but his body wasnt
with alzheimers the brain is not intact and usually neither is the body

both are progressive diseases with no cure or treatment to stop it

they are getting close to finding a treatment for huntingtons

we are getting closer to finding one for alzheimers

i was asked to read  this blog i wrote about greg at his celebration of life
i knew that wouldnt be able to make it through reading it
i was right as i only made it halfway thorough the reading
a friend finished it for me

i had seen greg a few months before he died
his brain was as sharp as ever
he was bedridden with the jerking movements of huntingtons and with the difficulty of breathing and swallowing and talking that comes near the end

we had a good visit
as i left i patted him on the foot 
said my goodbyes

i knew as i left i would never see him again

which disease would i rather have
neither 

i guess alzheimers would be better since there is some hope a treatment may happen in time 
at least at the end of alzheimers you dont know whats going on 
but your family does

yes 
i would choose neither
__________
05-23-2012
MY FRIEND GREG
i wrote this blog on a visit to see greg last year
i knew then and i think he knew that would be
the last time we would see each other

it was a hard blog to write and is a hard blog
to read even now
ive been asked to read this blog at his memorial service
ill do it but may not be able to finish it
so someone will finish it for me if i cant
my wife she cant do it either as she cries
every time she reads it also

greg died in the final stages of huntingtons disease
this last weekend
its a terrible progressive genetic neurological disease
thats passed from parent to child

he knew he definitely had it for several years as there
is a genetic test that can be done to accurately diagnose
if you have the disease

if you get the gene you will get the disease
and if one of your parents had it then you know whats
going to happen to you

i may have alzheimers disease
i say i might have it as i cant be 100% sure that it will happen
all the lab studies point to that as being the cause of my mild
short term memory
greg he knew 100%
maybe i have some hope while he didnt have hope
he was going to develop the terrible symptoms of huntingtons
i may not develop alzheimers

not sure which is worse or better
knowing for sure or having a little sliver of hope

greg and his wife made the most of the years after he knew
for sure
with travel and generally enjoying life
they were lucky to get to prepare themselves for what has
eventually happened
others who dont want to know dont get to prepare as well
they did as good a job as anyone could do
and i think it made things better for them
because they were prepared
although it was been difficult for them

if i could choose alzheimers vs huntingtons disease
which would i choose
having a progressive disease and knowing all the way through what
happens to you as you deteriorate or
having a progressive disease and not knowing as things get worse as
you deteriorate
i think i would choose alzheimers every time
although both are hard on the family and the caretaker

sometimes life isnt fair and  just sucks doesnt it

for more information on huntingtons disease go to www.hdsa.org

for more information on alzheimers disease go to www.alz.org

greg my friend
rip
you will be missed but i know your suffering is over
___________
since i wrote this i had an amvid pet scan which shows amyloid
this verifies that i have alzheimers disease
i still would chose neither if i had to chose a disease
maybe i would chose alzheimers over huntingtons since when i get bad i wont really know that im bad

the sad thing is the family knows though with both of these diseases

the organicgreen doctor

organicgreendoctor: aducanumab study to be reactivated-im in

organicgreendoctor: aducanumab study to be reactivated-im in:   ADUCANUMAB STUDY TO BE REACTIVATED-IM IN i am in the quest to be the first survivor of alzheimers disease thats my goal i may not reach it...

aducanumab study to be reactivated-im in

 ADUCANUMAB STUDY TO BE REACTIVATED-IM IN

i am in the quest to be the first survivor of alzheimers disease
thats my goal
i may not reach it but im trying to do what i can to slow it down

if you have ever been to an alzheimers association walk to end alzheimers you may have seen those different color flowers in their promise garden like in the background of that picture
the colors represent those with family members with the disease those with the disease those who are advocates for alzheimers
then

there is that white one that is not ever in the promise garden
its reserved for that first survivor
its usually shown at the opening ceremonies of the walks
i usually have to hold up and talk about the one that is for those with the diagnosis
they wont let me even hold that white one

that white one is my goal to be able to stand up there and hold it high

in my quest for the white alzheimers flower i have done a lot over the last 10 years to slow it down
the last thing i added was to be in the biogens aducanumab study

as a review
aducanumab is an antibody derived from old folks who dont get alzheimers
its then made in the lab and given intravenous to research subjects
it may slow down things some

about 10 days ago the fda advisory panel recommended it not be approved for use in alzheimers disease

the thinking is the full fda panel will not approve its use but will require a longer phase 4 study to determine if it really helps
or
probably less likely it will approve its use in alzheimers disease

this decision is coming in march 2021

in 2016 i entered the aducanumab study receiving as i found out later 18 months of placebo

then later i got 7 months of the real aducanumab

they gave me a low dose i think of 3mg then later a 6 mg dose then eventually the full dose of 10 mg that may be the one that slows down the disease

my last dose was in 2019 when the study was stopped
then later a decision was made to reactivated the study since analysis of the data from the study showed it may help then the covid 19 caused it to be put on hold

yesterday i had my annual neurology visit at ucla to see the neurologist that manages my care
she asked me a lot of questions about how i have been doing cognitively and health wise
then she did a full neurological exam
then i did the moca memory test
one thats commonly used in neurological offices to follow ones memory 
normal is a score of 27-30
i scored a 29
i think some of my original moca scores when i was first diagnosed was around 25 which is abnormal
over time it has gradually returned to normal 
why
healthy living
aricept (donepezil)
maybe the few doses of aducanumab i received but my scores were already better before i started the aducanumab infusions

for some reason my memory has improved
as i told her i have to type in 10 different passwords each morning to log onto emails facebook twitter financial institutions etc
none of the passwords are the same and they are all random
i fugure as long as i can do that each day correctly im doing ok

then she said
finally i want to tell you that we are probably going to reactivate the biogen aducanumab next month or the next
everyone who was in the study has agreed to return to be in the study 
are you in she asked
you betcha i said

it has to go through an institutional review to say its ok
if its oked then im in 

i have to have new baseline labs and memory tests and neurological exams and maybe an mri of the brain and maybe a new amyvid pet scan for amyloid
if i pass it all then i would restart my monthly infusions for a total of 18 months

they would start me on the low dose of aducanumab to make sure there are no side effects then they move to the next dose then they finally move to the 10 mg dose that seemed to possibly slow down the disease

previously in studies they saw the amyloid was removed from the brain 
activities of daily living decline slowed
memory test decline slowed
tau protein decreased
inflammation decreased

the biggest side effect is a thing called aria which stands for amyloid related imagining abnormalities which are micro bleeds as the amyloid is removed from the brain
its more likely to occur in patients like me who have the apoe 4 gene for late onset alzheimers
if you have the homozygous or double version like i have its more likely to occur

so far in the hundreds who have taken aducanumab no one has had to be removed from the study because of these arias

so in summary 

im in 
for at least 18 months
hopefully by the end of the study a decision will be made on how effective it will be

so for now i am back on my quest to be the first survivor

the organicgreen doctor

organicgreendoctor: covid 19-dont let this one be the last one

organicgreendoctor: covid 19-dont let this one be the last one: COVID 19-DONT LET THIS ONE BE THE LAST ONE  you can just feel it coming like a tsunami way off in the distance gradually moving this way its...

covid 19-dont let this one be the last one

COVID 19-DONT LET THIS ONE BE THE LAST ONE 

you can just feel it coming
like a tsunami way off in the distance gradually moving this way

its the covid 19 tsunami that we all have been worried about
its sad to see this about to happen since we are so close to ending this covid 19 nightmare

we have 244000+ deaths here in the usa
we lead the world in deaths and in cases
not something to be proud of
it seems that what we have been doing hasnt worked real well 
or
should i say what some of yall havent been doing

we are way way behind on doing what needs to be done to stop this tsunami

the worst case of covid 19 disaster is south dakota
it is the worst place to be in the world right now for covid 19
not a thing to be very proud of
but
for some reason their governor seems to be

they had the big bike rally that probably pushed them over the edge of the cliff
then a large rodeo
not much effort is seen by the powers to be to slow things down
shall we say 
the tsunami has already hit south dakota
the sad part is
it hasnt peaked yet


this is my hand drawn graph
it could be covid 19 deaths or hospitalizations or cases
it would look about the same

when i drew it i didnt know for sure which way the top of that third wave would go
well
it seems
its going straight up in the air 
where it will peak no one knows for sure
the sad thing is
that peak may not happen until late january or february
just imagine in your area what it will be like when the peak occurs 2-3 months from now

whats sad is the first two vaccines that appear to be effective are at 90% and 95% effective
if we all get those vaccines and do what south dakota is not doing we might get through this next
several months with most of us alive

if we dont
well we are going to lose a lot of folks to covid 19
plus a lot of people who have covid 19 are left with a lot of residual defects like respiratory mental health cardiac neurological and other chronic problems
i read this morning that 1 in 5 people who get covid 19 are left with mental health issues

so now we are facing thanksgiving and christmas holidays
kids are coming home from school and many will be told not to return to school
remember kids coming home for the holidays may be the vectors that will spread it to the vulnerable ones in our family 

more than half the people who get the covid 19 get it from folks they know

your family gatherings this holidays may be the last for some of your family members

the new president elect has plans to be more aggressive to do many of the things that should have been done over 6 months ago but wasnt
the sad thing is that it may be too late when january 20 gets here for all that needs to be done to help those we will lose between now and then

its estimated that we may have 500,000 folks dead from covid 19 by then

you cant just wish this thing away
watch what happens in south dakota if you just want to let this covid 19 go unchecked
if you dont believe in masks just remember when you get buried they dont put one on you

this again as ive written before
is up to us and each of our families to slow this down

i sure want to celebrate thanksgiving with our extended family 
i sure want to have a big ole family reunion where we can kiss and hug and visit

but
we all need to wait

we all need to take a covid year off

the organicgreen doctor

organicgreendoctor: alzheimers news-status of my biogens aducanumab

organicgreendoctor: alzheimers news-status of my biogens aducanumab: ALZHEIMERS NEWS-STAUS OF MY BIOGENS ADUCANUMAB in the theory of what happens in alzheimers it is thought that first amyloid accumulates in t...

alzheimers news-status of my biogens aducanumab

ALZHEIMERS NEWS-STAUS OF MY BIOGENS ADUCANUMAB

in the theory of what happens in alzheimers it is thought that first amyloid accumulates in the brain in the hippocampus then later tau proteins inside the brain cells unwind and get deposited in the brain as tau tangles
the body then develops an inflammatory response to this damage and this inflammatory response causes more damage
as the disease progress the damage get worse and worse

the goal is to stop the three step process before it happens

enter biogens aducanumab drug which is a monoclonal antibody against amyloid  derived from older folks who dont get alzheimers disease
this antibody is then made in the lab and give intravenously to patients

i entered the aducanumab study about 4 years ago
i received 18 monthly intravenous doses of placebo followed by 7 months of the high dose aducanumab before the study was halted
it was restarted this spring but was stopped again due to covid 19
we all are waiting to find out when the study will be reactivated

biogen applied to the fda for approval for its use of aducanumab in treating patients with alzheimers

their study showed when given the higher dose that i was on that
the amyloid seen on pet scans was removed
functional measurements of how patients functioned were improved or the rate of decline was slowed
memory testing showed the same thing
those with alzheimers should have a decline from year to year some faster than others
tau protein scans showed less tau tangles
inflammation in the brain was slowed down also

so there was slowing of the measures of the disease
patients and families and doctors noticed improvements

if you look at how aricept (donepezil) helps to slow down the symptoms of azheimers i dont know that it works better than aducanumab
yet its approved for use

in order for aducanumab to get approved for use by the fda
an fda advisory panel meets which it did last friday 
it voted to not recommend that aducanumab be approved by the fda for use in alzheimers disease
it cited costs and not effective enough as the major reasons for voting against aducanumab

now the fda panel that makes the final decision will decide some time between now and march
it could approve aducanumab for use
however
usually if the fda advisory panel doesnt vote for it then the full panel doesnt usually vote for approval

there are however powerful influencers in the alzheimers world who want this drug to be approved
one is the alzheimers association a big mover in the alzheimers world and who has a lot of political influence wants this drug approved

several well known alzheimers researchers support the approval of aducanumab for use against alzheimers
many have seen how it has slowed the disease down in their patients

it is possible the fda panel will approve it
it is possible that the fda panel may require biogen to do a longer 4 year study then they will decide on its approval
it is possible that the fda panel will say no and thats it

my guess is they will either approve it
and or
require a longer term trial 

so how does this affect me
if its approved i will receive it monthly 
if biogen has to do a longer clinical trial then i will be in that trial for whatever time the study lasts
hopefully i will find out monday when i go to ucla

what do i think the fda should do
i wrote a statement and submitted it to the fda advisory panel
i think they should improve it
i think it works as well as aricept (donepezil) does
i realize it wont cure alzheimers but neither does aricept or namenda or exelon or razadyne which are approved for use in alzheimers 

no matter what happens i will get at least 2-4 more years of treatment with aducanumab

ill take whatever i can get

whats the other options 
right

i see alzheimers as a terminal disease like a terminable metastatic cancer
if i dont die of a heart attack or stroke or cancer thats what i will die from 

we give palliative care to terminal cancer patients to slow down the disease lessen pain and give patients a few months or a few years longer to be with their loved ones

so why cant us alzheimers patients with a terminable disease not have access to a drug that might slow down the disease some

it can be the difference of seeing ms b eg graduate from kindergarten then graduate from elementary school then graduate from  junior high school then if im lucky graduate from high school

aducanumab might allow me to see more than one graduation

thats why it should get approved

the organicgreen doctor

organicgreendoctor: my story revisited #65-adni2 study now the adni3 s...

organicgreendoctor: my story revisited #65-adni2 study now the adni3 s...:   MY STORY REVISITED-ADNI2 STUDY NOW THE ADNI3 STUDY IS HERE when i wrote this blog 8 years ago i had been in the adni2 alzheimers research ...

my story revisited #65-adni2 study now the adni3 study is here

 MY STORY REVISITED-ADNI2 STUDY NOW THE ADNI3 STUDY IS HERE
when i wrote this blog 8 years ago i had been in the adni2 alzheimers research study for two years
i had undergone lots of labs lots of memory tests lots of neurological exams one spinal tap several mris a glucose metabolism pet scan genetic testing and at least one amyvid pet scan

so someone somewhere had all that information on a computer somewhere
if someone could sit down and look at all the results they could have called me and said
you have mild cognitive impairment and it is definitely as definitely as you can be that its due to alzheimers disease

now that was never done
why
i agreed when i entered this study that i understood that i would never get the results
i didnt like it but i accepted it

why

i understood that to have research studies to be accurate it has to be done this way 
i also understood and now know that this adni2 would be and now is the most important alzheimers disease study ever done
i got to be one of those research subjects
me and a few thousand others that have changed the trajectory of alzheimers research

somewhere in the world actually in lots of places in the world researchers have my human genome that has been mapped out my dna my rna my blood my mris my amyvid pet scans my memory tests my neurology exams my spinal tap results

thousands of research papers have been written using this data
my data is in the middle of all of this 

so
i understood this when i joined the study adni2 i accept thats the way it is

i originally volunteered for this study to be in the normal control group but during the evaluation it was found i had memory loss greater than it should be for my age and occupation

the end result was i retired got on aricept (donepezil) and was diagnosed with mild cognitive impairment due to alzheimers disease

had i not volunteered for that study i fear that things would have gotten worse before i was diagnosed
i wonder how long i would have practiced before i really noticed symptoms
would things gone worse for me

getting into the adni2 study led to me getting into the aducanumab treatment study that may have helped to slow it down some
i hope and should find out on monday when i will get reactivated in that study
my opinion is this drug should be made available for use
its not a cure but it seems in the study to slow down the disease
i expect a long term treatment study like for 4 more years will be done
i right now have my hand up volunteering to be in that one although i am already waiting for the extension trial i was in to be reactivated
whichever treats me the longest is the one i want

as i was looking for a treatment study i was offered a spot in the adni3 study
it basically is the adni2 study with the addition of tau protein pet scans
they are also using new labs and new scan materials and new computer technology

the adni3 study is available in many areas
here is the link to the adni3 study
__________
04-17-2012
ADNI 2
adni 2 stands for
alzheimers disease neuroimaging inititative phase 2
its a mulicenter study on alzheimers
mainly funded by the stimulus package from 3-4 years ago
its the 2nd phase of this study
it will last for 5 years but if funding is present it will be continued

it is considered the most important study on alzheimers that
has ever been done
important research information is being written on results of
this study almost on a weekly basis

in this study there are 4 categories of study subjects

-normal controls-i tried to enter as a normal subject but it
was found i had some short term memory deficits so i was
placed in the next category

-early mild cognitive impairment-these subjects are real early
in the process
many like me have very subtle symptoms not
noticed by others
many are still working their jobs
none are pilots or doctors or air traffic controllers who are still
working though

although real early many of us are already on aricept (donepezil)
which can slow the symptoms of alzheimers but will not stop the
progress of the disease
sometimes starting the meds now at this stage will delay the onset
of the disease sometimes as much as 5 years

-mild cognitive impairment-these subjects have less subtle findings
some which are obvious to friends and relatives

-alzheimers disease-these patients have all the signs and symptoms
of alzheimers

if the new medicine crenezumab thats being tried on the large family who
carry the early onset alzheimers gene in columbia works then that medicine
could be started one day on normal subjects who will get the disease or
those of us in the early mild cognitive impairment group

the disease would be stopped or slowed down significantly
we are a few years away though from knowing if that will work
sadly for me since i  carry the apoe 4 genotype double gene
these meds may not work as well on me

today the tests i will have are
a general interview with my wife by the research coordinator to make sure
i am not having any new problems

a large number of vials of blood sent for multiple screening labs like
thyroid liver function test cbc etc and tests for proteins in the blood
that have been associated with alzheimers disease

eventually these blood tests will be available to everyone so that you
can be screened to see if you have a chance of getting alzheimers
it may be 90+% accurate

then next i have the test i dread the most the
2+ hour neuropsychological exam
the torture test
its frustrating because i know that i will have problems with parts of the
tests and cant do anything about it

then i have a mri of the brain
its looking for brain shrinkage and for subtle changes in the size of
the hippocampal area of the brain-the area where all this crap
starts

then i get a one year reprieve and go to annual visits
next year i will have all these tests done plus  a spinal test for
amyloid and tau protein  a fdg glucose metabolism pet scan and
a amyloid pet scan (thats like the new amyvid test thats now available)

is it worth doing this
yes it is even though i dont ever get the results
this research study the adni 2 study may help me one day but
will definitely help my kids or your kids or our grandkids
so
its worth it
__________
if it makes you feel better about me my memory tests are now in the normal range
in fact i will have the in the office moca test done on monday
i expect to get a perfect score on it

on the jacket my wife she is wearing in the picture above it says 
fighting for the first survivor

that survivor i want to be me

the organicgreen doctor