welcome to the organic green doctor blog

i am a family physician who was diagnosed with
early mild cognitive impairment(mci) amnestic type on december 21, 2010
this is a precursor to alzheimers disease
because of this diagnosis i have opted to stop practicing medicine
this blog will be about my journey with this disease
please feel free to follow me along this path
i will continue blogging on organic gardening, green living,
solar power, rainwater collection, and healthy living
i will blog on these plus other things noted to be interesting

Thursday, April 22, 2021

organicgreendoctor: garden news-volunteers in the garden

organicgreendoctor: garden news-volunteers in the garden: GARDEN NEWS-VOLUNTEERS IN THE GARDEN yesterday when i entered the garden early in the morning just as the sun peaked  over the trees i looke...

garden news-volunteers in the garden

GARDEN NEWS-VOLUNTEERS IN THE GARDEN

yesterday when i entered the garden early in the morning just as the sun peaked  over the trees i looked around 
and
i could see all these volunteers in the garden
not humans
plants
some edible
some not edible
some vegetables
some flowers

this sunflower above appeared in my garden path a few weeks ago
i am sure some bird planted it for me
thanks
since it was not in my way i decided to let it stay there
this unknown volunteer sunflower

last week it was about 5 ft tall 
now
this week it is well over 6 ft tall

its some type of giant sunflower
time will tell if it has one big seed head on it or several smaller seed heads

the sunflower will provide nectar and pollen and food for bees butterflies and birds 
the bees crawl all over it
after the seeds all form i will either leave it hanging for the birds to eat
or
i might cut off the seed head and let the chickens eat the sunflower seeds

i plan on leaving the stalk in place
at the base i will either plant a red malabar spinach vine pictured below
or
i might plant a vining tatume squash
both of them will vine all the way up the sunflower stalk


this is borage
it is a bee magnet
it seeds through out the garden 
if its not in the way i just leave it in place
the blue flowers are edible
i use them in salads for color


these are poppies that are also all over our garden
i have a lot of them along the outside border of my garden bed
if they arent in the way i leave them in place
sometimes though they pop up in the wrong place so sadly i have to remove them
recently i had to remove some so i brought them home to put in a flower arrangement
ms b informed me
you know you arent suppose to pick the poppies
evidence
she was listening to her kindergarten teacher


this is chamomile
it has the right of way in our garden
this one popped up in the walkway between the onion bed and the leek bed
the white flowers have all fallen off 
those orange flowers in the picture above are poppies that havent opened up yet

several human volunteers in the garden harvest the chamomile for chamomile tea 


here many people look at purslane as a weed
i know in texas i use to buy it every year and plant it in the garden
it has a pretty flower on  it
this one is a yellow version
it is a succulent i think

i harvest it to use it in salads

we get a lot of it in the garden here 
sometimes i will pull it up since it grows like in a mat
then i place it around my vegetables as a mulch


this is purple amaranth
it is a grain 
soybean farmers for example see it as a invasive weed
the grain that purple plume at the top can be harvested and used as a grain
you can buy amaranth grains at the supermarket

i use it like this 
the small tender leaves are harvested and used in salads
the larger leaves are harvested and used in stir fries or in a pot of greens with collards or kale or swiss chard


this is a volunteer malibar spinach vine 
its ancestor was bought years ago at the natural gardener in austin texas
it reseeds every year

the day we drove from austin to santa barbara i harvested several of the baby plants
and 
placed them in a zip lock bag
on arrival three years ago i planted them in my garden

we use the smaller leaves in salads
the bigger leaves we use in spinach casseroles or my wife she makes a mean sag paneer with it 


finally 
this is a volunteer tomato that i found growing in my garden path 
i dug it up and transplanted it into the large tomato bed we have in the community garden
so
i labelled it
the mystery tomato

so in our community garden we use a lot of volunteers to take care of our garden
but
we also use these volunteers above in our garden
i must say this time of year 
these plant volunteers are the showcase in the garden

this is one reason i volunteer myself

the organicgreen doctor

Wednesday, April 21, 2021

organicgreendoctor: my story revisited #83-my brother revisited

organicgreendoctor: my story revisited #83-my brother revisited: MY STORY REVISITED #83-MY BROTHER REVISITED yesterday as we drove down to ucla to do my first mri in the continued biogen aducanumab study i...

my story revisited #83-my brother revisited

MY STORY REVISITED #83-MY BROTHER REVISITED

yesterday as we drove down to ucla to do my first mri in the continued biogen aducanumab study i thought a lot about my younger brother who died in the final stage of alzheimers disease about 6 months after i wrote this blog
i would see him one more time after that visit


a lot of thoughts went through my head as i stood and looked at the entry to the mri research center where i would get my first of nine mris in biogens aducanumab study 

during the mri scan you are locked in place
for me yesterday it was around 30 minutes
i usually close my eyes and day dream

why me i thought 
why am i still here 8 years later and he is gone

it has taken a lot of effort on my part to get to where i am now soon to get monthly infusions of biogen aducanumab that will probably slow down the disease some 
how much it slows things down we wont know for a couple of years

would it have helped him or was his disease too advanced 
i think it was too late for him
it would have had to be started even before he was diagnosed 

all of this wasnt available when he was alive

now you can get in treatment studies that may help
you can get an early diagnosis 
for some they can even be diagnosed before symptoms start

we are getting closer to a treatment to slow it down some

its like having a terminal cancer and you opt for chemo treatment to slow the cancer down some knowing you will not get a cure

most of us in the alzheimers world would accept slowing it down some

even for me it may be too late
it would have been better if i could have been treated 10 years ago

for his kids and my kids and their kids there will be treatments available 
some before symptoms start

whatever time it gives me by slowing things down i will take it
__________

02-01-2013
MY BROTHER


this is what my younger brother did for years
as a fireman
he retired after twenty years as a captain
then
after retirement he worked for several years as
a deputy sheriff who traveled with a drug dog
all the time
he served a rural area by himself and one of his
dogs were always by side
he could signal the dog who stayed in the car when
he stopped someone but a signal brought the
dog out immediately
he and his dog found a lost 5 year old once and was
used multiple times to track escaped prisoners or
lost persons

so thats his face my brother
a father a fireman a policeman
a hardworking likable friendly helpful person

this has all now been stolen from him by the disease
alzheimers



its a slow process sometimes
it steals your ability
to drive
how to operate the car

you cant find the keys
you cant find anything
you are lost inside
your family feels you slowly drifting away
daddy honey where are you
we miss you so much and want you back

but alzheimers you see is unforgiving
you dont ever come back you just continue going away
until its all over

these are the things i think about a lot
especially like i was two weekends ago
visiting with my brother in the alzheimers center
the stare the alzheimers stare he has now
its the same that my mother had
the occasional smile so you know hes in there somewhere

that robust fireman
that honorable deputy sheriff who was fair and honest
and who did good things when he rescued that little girl
and when he protected us
now he is reduced by this terrible disease to a core of himself

its so sad so sad
i think about him a lot and even dream about him a lot

heck last night he and i went with my historian brother who was
driving a large truck cross country
we had some good adventures together like we did when
we were younger some we can never talk about
then i woke up
and i came back to reality

alzheimers has and is stealing him away
like it stole my mother and started stealing my dad

there is a chance
and time will tell
when it will begin to steal me

you know
im ready if that happens
it seems mine may be a slow process
at least for now
so i have time to enjoy things and to do things i might not have
done if i didnt know
i wish he would have known too so
he could have extracted more like i am from life

at least i know
and can deal with it
its the not knowing and having it sneak up on you and your family
i think is worse

so brother
we miss you
we think of you every day
but i remember the fireman the deputy sheriff the father you were

love

the organicgreen doctor
__________
when i was diagnosed in 2010 i really didnt think that today some of you who were my patients would still me messaging me asking me health questions and i would still be cognitively intact to be able to answer your questions 

i know how lucky i am to still be here and be cognitively normal ten years later

the organicgreen doctor

Tuesday, April 20, 2021

organicgreendoctor: i must say i have thought about doing this

organicgreendoctor: i must say i have thought about doing this: I MUST SAY I HAVE THOUGHT ABOUT DOING THIS  chp photo if you have ever driven the 405 in california you can understand why this happened or ...

i must say i have thought about doing this

I MUST SAY I HAVE THOUGHT ABOUT DOING THIS 

chp photo

if you have ever driven the 405 in california you can understand why this happened
or
if you have ever gotten stuck in traffic in austin on i35 during rush hour

when we go to ucla for my research studies our trip is only about 90 miles
based on when we leave it can take 90 minutes or it can take 180 minutes
ie 1 1/2 hours or 3 hours

today it will probably take 2 hours going and 2 1/2 hours maybe 3 hours coming back

i must say last week when i was on my way back from my 6 hour evaluation for the biogen aducanumab study if you had looked over and saw me sitting in the passenger seat you would have thought the same thing the chp thought when they saw that guy in the picture above
sometimes i even wear what i call my bernie sunglasses which would make me look more real

is he alive or dead or is that bernie

when you go off the hwy 101 going south onto the 405 its like driving into a parking lot of a concert as everyone is leaving
its stop and sometimes go

now lucky for us its usually two of us together since i have to have a study partner with me at each visit
so
if we want to we could scoot over into the hov lane
that is if we could even get over there

now
i have timed it several times when the traffic is the thickest
it is actually slower to get in the hov lane at certain times
so
this guys trick may not benefit you much at the worst time for traffic
plus
the fine could be $400 

this guy linked in this article and his buddy in this chp photo were caught finally after a 1 1/2 year battle that they won until the chp noticed this guy in the passenger seat looked suspicious

so
i enlarged the photo and looked at it real close
the mask helps the disguise some
maybe he should have done a black mask instead

was it worth $400 to ride in the hov lane to commute for a year and a half on the los angeles freeway 

well
i would say 
thats money well spent

he even got to keep his mannequin which i have named bernie 2

maybe he should have put him in the back seat and pretended to be an uber driver
he might not have ever got caught
or
he could have put sunglasses on him and made him look like bernie in the weekend with bernie movie
if you dont know that movie just google it or see this bernie link 

i wonder if someone turned him in 

just call me bernie 3

the organicgreen doctor

Monday, April 19, 2021

organicgreendoctor: covid 19-now what should we be doing

organicgreendoctor: covid 19-now what should we be doing: COVID 19-NOW WHAT SHOULD WE BE DOING 50% of americans have had at least one covid 18 vaccine the goal is 75-80% add to that those who had th...

covid 19-now what should we be doing

COVID 19-NOW WHAT SHOULD WE BE DOING

50% of americans have had at least one covid 18 vaccine
the goal is 75-80%
add to that those who had the virus who are immune
then
we are getting to a good place that looked unobtainable weeks and months ago
i personally feel less gloom and doom

here in santa barbara we moved from the restrictive purple tier to the red tier and are about to enter the much less restrictive orange tier to be followed to the real unrestrictive yellow tier soon after that
the next tier i guess you could call it the white tier as it will be wide open with little restrictions

why are we able to open up here
first when you walk around most people are wearing masks
you cant go into a store here without a mask on 

we arent stupid you know
masks prevent the spread of the virus

we have had 4 covid 19 deaths in a county of 400,000+ people in the last 2 weeks
we have 5.2 cases per 100,000 which allows us to enter the less restrictive tier
when you drive around you can feel and see the increased activity 

the icus only have 2.5% of their cases with covid 19

the schools are now all open
the high school sports are open 
its interesting to see volleyball and football being played in the spring
the restaurants are open partially inside and open fully outside

i see it in trader joes shopping
all shoppers and employees wear masks
you now wipe down your own carts
you still cant bag you own groceries inside the store with your reusable bags
you like me do it outside
there is not a limit on how many can go inside
there doesnt seem to be the old people hour at the store anymore

so here in santa barbara the numbers have fallen dramatically from the winter
things are opening up 

now in places like michigan this cant and shouldnt be done

california is following the data the science not the politics
like michigan if things were to get worse than the restrictioins would return

one limitation soon and this is a big one
will be 
liability

once the fda gives it final official approval of the vaccine
remember
for now
the vaccines are under emergency approval 

once that official approval happens
thats when liability restrictions kick in 
eg
employers can require that you get the vaccine before you can work
a proof of vaccination may be required before you enter some businesses or sporting events etc

the liability insurance companies may or should i say more than likely will be place a restriction on covid 19 coverage

eg if an employee or customer catches covid 19 from your business etc the insurance company may not protect you from being sued

those suits are right now being lined up ready to go when that full approval by the fda occurs

remember to keep your covid 19 vaccination record safe as you will probably need it

we photo copied ours and filed a photo of it and have it at our primary care doctors office

so 
now that things have improved here with the covid 19
how should i handle masking etc

these are my opinions from reading a lot about all of this

should i be wearing a mask if i am fully immunized
yes
it is not 100% known if its possible for an immunized person to carry the virus asymptomatically
thus exposing those around them to the covid 19 infecting them

it is not 100% known if some of these new variants are 100% susceptible to the vaccines
especially the brazilian one which is now in the us

no vaccine is a 100% effective

so if you have gotten the vaccine its unlikely you will catch the virus and or spread it
but
its possible

for that reason if you have been vaccinated you should wear your mask to protect yourself and others

in our group
mr hudson who is immunocompromised  from the drugs he has to take to prevent him from rejecting his kidney
this makes him susceptible to catching the covid 19 virus

so
anyone vaccinated or not should wear a n95 type mask around him
his parents and my wife she and i are vaccinated so we are unlikely to be the one that passes it to him
we still wear a mask around him

anyone unvaccinated who gets near him should be doing the same

his sister ms b is unvaccinated and thanks to the covid 19 has had to live a restrictive kindergarten life this year away from school and friends

remember her age group may be asymptomatic carriers of the virus
so 
far now her restrictive life will continue
she probably will attend full school this fall

hopefully this fall once the vaccine is approved in her age group she will be protected
then mr hudson will be more protected

so for mr hudson we need to be 100% sure

we are close real close to being near the end of all of this

if i am around folks who have been all immunized should i wear a  mask
yes
remember that 100% thing

if i am around folks who are unimmunized what do i do 
i wear my mask mainly to protect them

i would expect them to also wear a mask

if you arent immunized you should always wear a mask
remember
you unimmunized folks are the only ones left for the covid 19 virus to infect
there is about 150 million of you left

would i travel on a plane
yes if it was necessary that i travel
otherwise i will wait until more folks get immunized

will i get my booster shot this fall or winter
absolutely 

would i go to a restaurant to eat
sorry 
i would only eat outside

its still hard for me to remember im mostly wearing my mask to protect you not myself

should an unimmunized person go swimming
swimming itself doesnt spread the virus 
it whether you are exposed to unimmunized persons at the pool or beach 

also
remember it appears that the virus doesnt stay on surfaces like they thought at the beginning
its mainly a respiratory virus

we used to save our groceries and mail for 3 days now we dont
we used to wash off our refrigerator groceries now we dont

so
i wear my mask when i go outside the door
its simpler that way i dont have to decide whether i should wear a mask
i just do it
its no big deal

i wash my hands and use hand sanitizer
probably a good idea even before the pandemic to prevent viral and bacterial infections

i still space myself from others
remember its for their own good

i cant make myself go to a large gathering or go in a movie theater or museum yet
and probably wont until the numbers of vaccinated are higher and until we know what the variants wil do and  until we get down into that white tier the do what you want tier

my guess is soon the recommendation will be if you are immunized you dont need to wear a mask
unitl
that time arrives you should stay masked

do keep an eye on whats happening since we still are having 60,000 cases a day in the us
we may lose another 58,000 americans to covid 19 before august
so
its not gone
until it does go away 

remember what i do is based on where i live
where you live may be more restrictive or should i say should be more restrictive

be safe

the organicgreen doctor

Friday, April 16, 2021

organicgreendoctor: alzheimers news-the five most common dementias

organicgreendoctor: alzheimers news-the five most common dementias: ALZHEIMERS NEWS-THE FIVE MOST COMMON DEMENTIAS i have been asked frequently over the years are alzheimers and dementia the same dementia is ...

alzheimers news-the five most common dementias

ALZHEIMERS NEWS-THE FIVE MOST COMMON DEMENTIAS

i have been asked frequently over the years
are alzheimers and dementia the same

dementia is an umbrella term that means any of the dementias that cause memory loss

i also am asked or am told that someones family member had dementia
i ask 
what kind
i dont know they said
they just had dementia

in 2021 during an evaluation usually you can find out which dementia a person has
why is that important
well
most people and their families want to know

the management of the different dementias can be different

the five most common dementias are
alzheimers disease
vascular disease
lewy body disease
frontotemporal dementia
mixed dementia


alzheimers disease 
we all know about alzheimers disease 
it is associated with amyloid protein accumulation and tau protein accumulation and inflammation in the brain

early onset alzheimers is caused by rare genes that if you inherit them you will most likely get the disease at an early age usually in the 50s and early 60s

late onset alzheimers is associated with the apoe 4 gene
about 25% or less of us have that gene
if you get the gene you are at risk for developing late onset alzheimers disease
how you live your life determines if you get it if you have apoe 4 gene

not all alzheimers is gene related

like the other dementias there is no treatment or cure

vascular dementia
the vascular system gets affected
strokes are a common cause of vascular dementia
my mother probably had a mixture of vascular dementia and alzheimers disease
my younger brother probably had alzheimers disease only
so far that is the case with me

lewy body dementia
this is the one robin williams had
if your read about the last months of his life you get an idea how bad this one is
these patients have an accumulation of lewy body proteins in the brain
its an unpleasant one to have in your loved one

frontotemporal dementia
there is accumulation of proteins in the frontal and temporal parts of the brain
these areas control behavior and emotion and language
it tends to occur under the age of 60 
it also can be an unpleasant dementia for loved ones to experience
unpleasant reactions can occur in these patients

mixed dementia
its a combination of two of these
alzheimers disease and mixed dementia are the most common one

again
sadly 
none of these are treatable or curable
medications are used to help control some of the symptoms but eventually the dementias all win in the end

if i had to choose one
i would i guess choose alzheimers disease or vascular disease 

these is not a good choice though amongst the dementias
i would not want lewy body or frontotemporal dementia

there is more work being done on alzheimers than the other dementias
my guess is a treatment will be available probably for alzheimers disease before one for the other dementias

my drug biogen aducanumab may end up helping slow down alzheimers disease but probably will not help with these other dementias

here is a good review of these dementias from alzheimers.gov

here is a review from the alzheimers associations website with links to more information 

when you or someone you know is being evaluated for memory loss be sure they have had a good thorough workup

sometimes memory loss can be reversed in some cases such as

side effect of medications
issues such as depression anxiety stress 
certain vitamin deficiencies like vitamin b12 eg
drinking too much alcohol
blood clots tumors or infections in the brain
delirium a sudden state of confusion and disorientation 
head injury such as a concussion from a fall or accident
thyroid kidney liver problems
normal pressure hydrocephalus  an increased accumulation of spinal fluid in the brain

then if you or they have dementia it needs to be defined accurately since the management of them are different

the patient should have a medical exam and medical history labs memory testing in house and maybe a more complete neuropsychological exam if indicated and maybe a mri

then 
if needed to make the diagnosis an amyloid pet scan can be done to help solidify or rule out  an alzheimers diagnosis

soon 
a blood test will be available to be used to help diagnose alzheimers also

once an accurate diagnosis is made then a treatment to help control the symptoms can be done
or
if it is a reversible cause then treatment can be started 
eg
if the thyroid is low thyroid replacement can be started
if the vitamin b12 is low vitamin b12 replacement can be started
stopping alcohol intake if abuse is a problem
adjusting offending medications
treating depression anxiety or stress
etc

hopefully this is helpful to those who inquired about the difference between dementia and alzheimers
disease

the organicgreen doctor

Thursday, April 15, 2021

organicgreendoctor: covid 19-cerebral venous sinus thrombosis and the ...

organicgreendoctor: covid 19-cerebral venous sinus thrombosis and the ...: COVID 19-CEREBRAL VENOUS SINUS THROMBOSIS AND THE VACCINES thrombosis means blood clots the most common blood clot that most of know about i...

covid 19-cerebral venous sinus thrombosis and the vaccines

COVID 19-CEREBRAL VENOUS SINUS THROMBOSIS
AND THE VACCINES

thrombosis means blood clots
the most common blood clot that most of know about is the one you can get in your calf
also we all have heard of folks getting blood clots to the lungs called a pulmonary embolus

a blood clot can form anywhere a vein is located

a rare location is the cerebral venous sinus in the brain

a blood clot in this area the cvst or cerebral venous sinus area occurs 4-6 times per 1 million people each year
a blood clot in the leg occurs 1240 per 1 million people each year
a pulmonary embolus occurs 600+ per 1 million people each year

so a cvst or cerebral venous sinus thrombosis or blood clot is a rare event
neurovascularmedicine.com

the blood flows up from the heart through the arteries via the carotid arteries
then
it goes into the brains smaller arteries then eventually gets into the vein or venous system
this is where the cerebral venous system or sinuses are located
the link above is a lengthy scientific discussion of cvst or cerebral venous sinus thrombosis

a clot in this area can cause headaches nausea vomiting seizures coma and other neurological symptoms

its a medical emergency

a blood clot to the brain we hear about usually occurs in the artery system
eg folks with atrial fibrillation can form a clot in the heart chambers which will break lose and get lodged in the brain causing damage to the areas that that artery supplies
most strokes we see are these

in the general population the incidence of cvst or cerebral venous sinius thrombosis is 4-6 per million each year
in those who get a covid 19 infection the incidence of cvst is 39 per 1 million people
so far in those who get the moderna or pfizer vaccine the incidence is 5 per 1 million people
so far in those who got the astra zeneca  vaccine the incidence is 4 per 1 million people
so far for those who got the johnson and johnson vaccine the incidence is 1 per million

so
you are about 10 times more likely to get cvst or cerebral venous sinus thrombosis if you get a covid 19 infection than if you get one of these vaccines

the cvst or cerebral venous sinus thrombosis is a rare rare event when it happens


what is different with the cvst that you get with the covid 19 or the vaccines is that antibodies develop against the platelets in the blood that makes the blood clot 

the usual cvst that is seen in medicine the blood clot forms via a different mechanism
that one you treat with heparin
the covid 19 cvst is not treated with heparin since it will make things worse since the platelet count drops in these patients and the heparin makes things worse

these are the facts the cdc are looking at

do you let 10 times more cases of this to occur in people who dont get a vaccine and get infected with covid 19 
or 
do you give the vaccines knowing you will protect 9 out of ten people from getting cvst from the covid 19 infection
knowing 1 out of 10 of them will be harmed by cvst from the vaccines

you save 9 and harm 1

or one way to think of this is that you actually overall you save 999,999 and harm 1 person

thats the math of cvst  or cerebral venous sinus thrombosis in covid 19 as i understand it

the organicgreen doctor

Wednesday, April 14, 2021

organicgreendoctor: my story revisited #82-my biogen aducanumab study ...

organicgreendoctor: my story revisited #82-my biogen aducanumab study ...: MY STORY REVISITED #82-MY BIOGEN ADUCANUMAB STUDY START THEN RESTART yesterday after two years of waiting my wife she and i jumped in our ca...

my story revisited #82-my biogen aducanumab study start then restart

MY STORY REVISITED #82-MY BIOGEN ADUCANUMAB STUDY
START THEN RESTART

yesterday after two years of waiting my wife she and i jumped in our car and made the almost 100 mile drive to ucla to begin the reevaluation to be reentered into the biogen aducanumab study officially named
biogen embark 304 study
click on this link to read abut the study in clinical trials.gov

its title for those scientific folks is 
phase 3b open label multicenter safety study of aducanumab in subjects with alzheimers disease who had previously participated in the aducanumab studies

a few years before i wrote the two blogs below i identified this study as the study that i wanted to be in 
looking at my diagnosis and where i was with that diagnosis 

it aducanumab was the best drug that had the best potential to help me slow this down

i realized that when i made the choice to do this drug study there would not be another one that i would qualify in the future for that would help me

it was my last chance actually

when things progress too far its too late for any medication to help 

in 2016 i was still in that window of time where i could be helped
in 2021 i am still in that window but i have lost time since i got put in the placebo group for 18 months then got only 7 months of the real drug

two years ago the study was stopped abruptly and never restarted because of the covid 19 pandemic

so basically i have lost 3 1/2 years which in alzheimers time is a long long time

luckily since 2016 i havent deteriorated any in my memory 

im just hoping that what little real drug i did get helped some

i realize that getting another two years may make a difference in slowing down the disease
or
as we will find out in two years if it doesnt help any at all 

so before we drove down yesterday to ucla i reread my old blogs below to review what i was thinking before and after my 2016 visit

i realize then and i realize today that this is my last chance to receive a drug that may help

eg i was told about one of my fellow participants that had progressed too far with his disease in the time since the study was paused that now he is too advanced with his disease to be in the study 

how sad that family must be

this summer in about two months in june the fda will render its final decision on whether the aducanumab will be approved for use in mci and early alzheimers disease
if it does i will be ahead of the game as i will have had over a year of treatment already with aducanumab

if it gets approved for use it will overwhelm the infusion centers in the united states since the demand for the aducanumab infusions will so large

so i had to redo all my testing to be reconsidered to be approved to be in the study

yesterday i did over 6 hours of memory testing well a lot of memory testing and labs and neurological evaluation and a lengthy review of the study 
like before it was tiring
mentally not physically

i fell like that i got near normal memory testing
if i was being seen for an initial memory loss evaluation i would probably be told that i was ok
however
when you do the amyloid pet scans and the tau protein pet scans
they tell a different story 

all the evaluations done yesterday will be sent to biogen to review
next week i will have an mri to make sure nothing else has shown up in my brain over the last two years

if accepted in the study 
then
i will have an amyloid pet scan for amyloid followed by a tau protein pet scan for tau 

hopefully my amyloid pet scan will show a reduced amount compared to the initial amyloid pet scan i had in 2016 and later

i havent had a tau protein pet scan before
it should be positive and will show how wide spread my disease is in my brain

i will not be allowed to see these scans or see the results

i would like to see them but thats not the way the game is played

if approved after all this then i will get monthly infusions for the next 24 months of aducanumab

i will have a total of
9 mris
2 amyloid pet scans
3 tau protein pet scans
lots of labs
lots of memory testing

yes is how i answer the question below

will it be worth it
__________
12-16-2016
ALZHEIMERS NEWS-TODAYS THE DAY
 
two weeks ago the alzheimers vaccine study on solanezumab came out
the results werent promising
however there was a 15% improvement noted in those folks
with mild alzheimers disease
this vaccine an antibody against beta amyloid doesnt go after the
plaques that form from beta amyloid in the brain
my drug does though
also
it appears that for this stuff or any new alzheimers drug to be
effective
it has to be used in folks like me with minimal disease
or
those folks like some of you that have prodromal alzheimers
ie
you just dont have symptoms yet but the disease process is
going on and has been for several years

once you get full blown alzheimers disease it may be too late
for a treatment

the solanezumab study called a4 results will be out in a few years
its on prodromal folks

if any of  you saw the 60 minutes show on alzheimers disease
that was a story of using one of these drugs called crenezumab
in a large extended family of folks in colombia who will get
alzheimers since they carry the dominant alzheimers gene

this one works more like the one thats being used in the study
i have been trying to get in

well
todays that day
i passed hurtle number one
i got past the nurse screener
i have been accepted to enter the prescreening part of their study
on
aducanumab

this one i think is the most promising of all the drugs so far
 
here is a npr article on aducanumab

this last week at a large alzheimers conference in san diego
the data from its phase 1 study was discussed

in folks with minimal symptoms
like me
not only did the beta amyloid get removed from the brain plaques
and the cs fluid around the brain
but
folks memory stayed the same or got better
the placebo folks who didnt get the drug
their memories deteriorated

there is a memory test commonly used in doctors offices
called the mmse
you get a score of 0-30
placebo folks deteriorated almost 2 points
treated folks didnt change or declined much slower
based on which dose of the drug they got

so for me i would accept no change or mild decline

the alternative to doing nothing
well
thats not good
its real bad

so today i get started on several more hurtles

today
my wife she and i make the trip to dallas
to the alzheimers center at ut southwestern
to start my journey
one i have been hoping for for 6 years now

it starts with an interview with the research nurse
asking me and my wife she lots of questions
all 1000+ of us in this national study go through the same thing

then
this visit or maybe the next visit if i pass this one
i get a lot of blood drawn
240 ml or 8 oz

then
i undergo that torture test
called neuropsych testing
which includes the mmse and other memory tests that the study is using

then
i undergo a neurological history and examination by the
studys primary investigator
a neurologist

then
this data is sent off to biogen the maker of the aducanumab drug
to decide if i go further in the study

if declined i will have an amyvid pet scan done privately
and
will move on with my life
looking for a another promising treatment
as
the clocks ticking on me

if i am accepted
i move to a spinal tap for beta amyloid and the tau protein
mri
genetic testing

if i am accepted based on these results
then i get the final test
the amyvid or amyloid pet scan
it will tell if i have the amyloid accumulated in the brain
if positive
im in
and
that means i know i have alzheimers disease for sure
well as sure as one can know without an autopsy of the brain

then
i will start infusions monthly
of a placebo ie water
or
the real deal

i have a 67% chance of getting the real deal
i have a 33% chance of getting the placebo

sorry i want the real deal
but
if i dont after 18 months or so they will switch me over to the real deal
for a total of 4 1/2 years of infusions

i do realize since i have the apoe 4/apoe4 gene
i have an almost 40% chance of having significant side effects
mainly headaches if i get the higher dose of the
drug
luckily few people have had to stop the study from these side effects

if it works
its all worth it

the real deal please


12-17-2016
ALZHEIMERS NEWS-AM I IN
 
this last friday
as my wife she and i were driving up to dallas
to the alzheimers center to begin this journey
hopefully
to get a new treatment for alzheimers disease
that may slow it down or if we are all lucky
stop it in its tracks

i did a lot of contemplating as i drove north
thinking back over the last 6 years
when
we made this same journey to the center
then
i was simply volunteering to be in the normal control group
of the large alzheimers study
alzheimers disease neuroimaging initiative phase 2

i was simply going up
to do my part to further our knowledge of what happens
in alzheimers
and
at the same time start a monitoring process for myself
since
it runs so strongly in our family

friday
as i sat in the same damn chair that i sat in
6 years ago when all this happened
i looked out the window
well the blinds were closed

in my reoccurring dream i have about this
there is a large tree growing up to the 4th floor outside
this window
in my dream it is a sycamore tree
i think because my grandparents one who had dementia
had a huge sycamore tree in their yard
and
i use to climb on it as a kid

all that really is there is just the windows of a building

but as i sat down to take the memory test friday
the same tester was giving the test that gave me the first one
i said you know in my dreams there is a big tree out there
she smiled that sweet smile of hers

now 6 years ago
i was broadsided by failing my memory test
ive done the thing so many times now
i know the parts i cant do very well
interesting is
some of the parts i have gotten better at
some i dont do as well

now
this study is called the aducanumab study
by the company biogen
of all the drugs out there right now
it has the most promising chance of being successful

i have had my eye on this study now for several years
well
i have fought hard to get into it
knowing that this could be my last chance to
plug into one of these new drugs
if i wait too much longer
i may to late for them to do any good
so
i know its now or never for me

now i continue to do all the healthy things i should be
doing
the same ones that all of you who read this should be doing
control blood pressure cholesterol weight
do exercise eat right get sleep avoid stress etc

all those no matter what i will keep doing
oh if you are genetically kin to me you should be aggressively
doing the same
since this drug is really meant for those of you
who have no symptoms but are going to get alzheimers

yes i was a little bit nervous
its like a terminal cancer patient
getting this glimmer of hope
from a new research drug
that will slow down the cancer or cure it

this is what this study means to me

so here we go

we arrived there at 930am and left there at 200pm
with no downtime

first
we met with the screening nurse
who went over the lengthy protocol with us
who went over my medical history with us
who took my vital signs weight etc

then
second
they drew some blood
well a lot of blood
i think i counted 10 vials of blood
its 2/3 of a can of soda
no i didnt faint
but
i need to eat a lot of iron foods for awhile to build
my blood back up
its almost like donating a unit of blood

they are testing cbc chemistries ua all kinds of biomarkers
genetic tests dna and rna studies etc
even saving some for perpetuity
in case its needed for more research some day

i realize i have my blood stored all over the place
across the usa

then
third
since i didnt pass out
i was able to proceed to the next testing
the much dreaded memory testing
it took about an hour
i did parts of the mmse memory test
some components of the moca test
and
a new test thats used specifically for this study

to get in this study
i have to be in the upper part of the mmse
but
must have difficulty with parts of the short term memory part
that correlates with mild cognitive impairment amnestic type
the stage right before alzheimers disease

knowing what i know from taking these things
i passed the mmse and will qualify based on how i felt i did
i had difficulty with the parts of the test that is correlating
with what i have noticed in my day to day life
which is what they are looking for

so far after these three things i feel like i am qualifying
for the study

then
fourth
i underwent answering questions on my memory
by a alzheimers center interviewer
comparing what my wife she has told them
to what i say

first question
do you have memory issues
the answer
yes
granted its subtle probably not recognizable to most
folks who know me

then
fifth
i underwent a lengthy neurological history and examination
by the main investigator at the alzheimers center for
this aducanumab study
he was good at picking out the parts of my history and exam
that correlates with my memory loss

so
at the end of the day
how do i feel about my chances of getting past this step
i feel like i met the criteria
unless something is hidden in the labs somewhere

all this information is sent to the biogen folks
to review
they make the final decision

if they say ok
then
i have a mri of the brain
if i pass that one
then
i have a amyvid pet scan for the bad beta amyloid
the test that is missing from all that i have had done

the one
that i feel will give me my final answer
the one
that will provide me with what i need to plan
the rest of my life

fingers crossed
___________

the finger crossing help since i got accepted in the study in 2016
i got my amyvid pet scan that was positive so i was accepted in the study
i got a total of 7 months of the real drug aducanumab

so when this study is over with if i am reaccepted i will have gotten about 2 1/2 years of the aducanumab infusions

will it help
will it make a difference

only time will tell

there are benefits to you and your family to you participating in these alzheimers research studies

my participation may add time to my being able to be with my family and friends a little longer and to remember it all

it also advances our knowledge of how to treat this awful disease

yes its all worth it

the organicgreen doctor