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

Friday, March 24, 2017

alzheimers news-1 down 47 to go

ALZHEIMERS NEWS-1 DOWN 47 TO GO
Image result for organicgreendoctor
i did it yesterday
got my birthday present
as i wrote the best ever

as i drove the 3 hours trip i did a lot of contemplating
thinking about this 6 year long journey that i have been on
hoping it will last a long long time before its all over

i thought how lucky i am to be this far along
and not have worsening memory loss

during that time this last 6 years
i lost my brother from the final stages of this disease
had my older brother get diagnosed with it

i thought maybe just maybe i am the lucky one
getting an opportunity that they didnt get
to really really slow this down

i am honored to be in this trial
knowing that if its successful as it might be
that it could be a game changer for me
and all my relatives behind me
to have a chance to avoid this awful disease

thats how close we are to finding a treatment
its right now today not off tens of years from now
for me and my family it started yesterday

yesterday the day for the rest of our lives

lets getter on is what i muttered under my breath
i arrived yesterday early of course to the infusion center
its located in this building at the university of texas southwestern
medical center
i walked up to this desk where the busy infusion center is
there sits this guy called santa claus
he is the receptionist
everyone calls him that
since he looks like santa claus
and
plays one at christmas
nice as you would expect santa claus to be
nice first person to interact with

then there was some snafu
we may have to reschedule
some protocol has to followed exactly right
i was the first one starting this study there
some special approval had to done by some god in massachusetts
or somewhere back east at biogen

we may need to reschedule if you dont want to wait
nope i said
im staying until this gets settled
ive waited too long and this may mean to much to me and my family
i just want to get this thing done
getter done i mumbled under my breath

finally after awhile it all got cleared up

back i went
nice nurse
nice receptionist
nice neurologist
it helps to have nice medical personal taking care of you
when you are dealing with the unknown
dealing with a terminal illness
i remembered as i watched them start my infusion and draw my blood
their patients are the ones that dont usually fair well
its their diagnoses

below thats the brown bag stuff hanging on the pole
the stuff thats either fake stuff or the real deal
the real deal for me please
me
i thought as i watched them hook all this up
i want to be the exception for them
i want to be a success result

the only thing i noticed as i got my infusion was
that i tasted salt on my tongue and i got real thirsty
dont know if thats a good sign or not
when it comes to whether or not i am in the placebo group
or not

if i get headaches get confused have some dizziness
then theres a good chance i got the real deal stuff
however not everyone has side effects
i am at higher risk for side effects since i have the apoe 4/apoe 4 gene
this gene put me at an increased risk for getting alzheimers disease

prior to getting the infusion i had a memory test done
for some reason i noticed that i did better on it than usual
it may be because i have had it done so much
i can anticipate the answers before they ask the questions
however
they for this study do a variety of memory tests
most of which i havent done before
which make them more accurate

so
i finished my infusion without any effects
now
i return each month to do the same thing all over again
except
i dont have to wait around the extra hour or so like i did
this time
in and out in an hour or so each time

i decided i can deal with whatever problems pop up
for
in the end it may be all worth it

i scheduled my next infusion date on 4/20
i did that date on purpose
its in case you dont know is marijuana day

why pick that day
well
there is a lot of research that needs to be done on the ingredients
in marijuana
they appear to be useful in the treatment of neurological diseases
like alzheimers
however
the federal government severely limits the research that needs to
be done on these marijuana ingredients

in my contact with folks affected by these diseases
they are using marijuana
obtaining it from states where its legal
using strands that have the potential to help

its sad that good scientific research cant be done
to find things like this that may help

its my small way of protesting our governments restrictions
on this research

but
hopefully if this aducanumab stuff works for me
i wont have to get involved with using any 420 stuff

next
a month of waiting
then
round two

keep following me on this journey
i am hoping the end result will be a good one
if it is
there may be hope for a lot of people

the organcgreen doctor

Thursday, March 23, 2017

alzheimers news-its my day

ALZHEIMERS NEWS-ITS MY DAY


Image result for organicgreendoctor
today is my birthday
i have had a lot of birthdays
the 40th one was memorable
yes i got black stuff and got my yard trashed
i got all those over 40 jokes

then
came number 50
yes i got the aarp stuff in the mail

then
came the number 60
i told my wife she
i just want a quiet one
have people leave me alone
no harassment please
i got enough at age 40 and 50

after my 60th birthday
our life was humming along pretty good
we had no idea what would be coming along
in about 9 months
our lives would change

kabam
there was the diagnosis
that diverted our future to where it is today
an uncertain one

now
i have got a lot of presents over the years
some well most have been good ones
but
yesterday
well
i got the best birthday present ever

my phone rang
hi
this is the alzheimers disease center at ut southwestern
we have an opening tomorrow at our infusion center
do you want to start your aducanumab infusions tomorrow

i didnt even hesitate a second
we have made receiving these infusions our priorty
yes
ill be there
early

im ready
to get this show on the road
the sooner the better

for those who dont know
aducanumab is an antibody that attacks the bad beta amyloid
that accumulates in the brain
beta amyloid is thought to be the substance that causes alzheimers disease
if you remove it
the alzheimers disease may be stopped or at least slowed down

i will be one of the first to get this stuff at the alzheimers center

everyone knows the drug humira
its advertised on tv all the time
its used for diseases like rheumatiod arthirits ulcerative colitis
crohns disease and other connective tissue diseases
its given as shots under the skin usually every 2 weeks
its an antibody against a protein that causes the inflammation in
these diseases
its generic name is adalimumab

my drug
aducanumab
my birthday present today
works similarly
but
the protein it attacks is the bad beta amyloid in the brain

this drug aducanumab
is the best hope that we have right now to slow this disease down
this study i am in will determine if it works or not
my reading and my hope is that it will

so
i am ready
to get the best birthday present ever today
it must be a sign
getting it today on my birthday
i believe
i believe
its a good sign

the organicgreen doctor

Wednesday, March 22, 2017

country n news-garden news

COUNTRY N NEWS-GARDEN NEWS

it feels like may around here
looking at the wildflowers and the fruit trees
and the trees and the shrubs that are ablooming
they all think its may also

i must say
that doesnt bode well for this summer
i suspect we will have an early summer
starting in the real may
hitting those hotter temps a month early
slowing down
the garden
the wildflowers
the greenery around here

as i look out around our property
i must say
its about prime for the spring
wish it would stay that way

recently
i took these tomatoes and peppers that i planted
back in the first week of february into large 5 gallon pots
put them in my small greenhouse with its southfacing
open clear wall
those tomatoes went crazy
even making little green ones and some red ones
no
those red ones didnt make it out of the greenhouse
and
i moved them outside under the lacy shade of
my huisache tree
to get use to being outside

so yesterday
i planted them
a cherry tomato
a juliet that produces small ones like crazy
two early girls that are full of green tomatoes
two celebrities that are always dependable

all of these are indeterminate
that means they can continue to produce all year
sometimes based on the hybrid celebrity type
they are indeterminate

but in my experience here at the country n
the juliette is the only one that i have been able to
summer over into the fall to produce tomatoes again
in the fall

the bed i use is about 3 ft x 12 ft
the soil depth is about 2 feet
of pure rich composty wormy soil
that i dig and plant using only my bare hands

no
i dont usually use gloves
i like the feel of the dirt on my fingers
under my nails
it brings me one with the soil

this winter i removed the blackeyed peas that were planted
on this bed
added lots of compost
added organic fertilizer and cottonseed meal and molasses
covered it up with the leaves some of you gave me
then
let it ferment for several months
until yesterday
when i planted my tomatoes

i dug the hole
added some earthworm casting to jump start the tomato plants
planted the tomato plant all of which had several small
green tomatoes on them
well one was red so i quickly ate it

then i watered it in with liquid fish emulsion sea weed molasses
to get the roots agrowing

now
hopefully i will get tomatoes earlier than usual
i already have i thought

i left them unstaked even though they were 3 ft or so long
knowing
that that freeze is coming
all i have to do is put some warm covering over them
then i will stake them up on wire cages

john dromgoole the organic garden guru always says
there is always an easter freeze around here

i agree
having lost tomatoes in april several times

also
here are my green 1015 sweet dont make you cry onions
all 200+ of them
yes
it looks like an early harvest of them
ill know its time when the stalks start falling over

also
here are the potatoes
agrowing like crazy
we definitely will have new potatoes by mothers day
heck
if the weather holds up as warm as it is
we should have all of them harvested by then

if you live around here
you have plenty of time
to prep your garden
and
plant those tomatoes and peppers
just
be ready for that easter freeze

the organicgreen doctor

Tuesday, March 21, 2017

dear ms b-rip

DEAR MS B-RIP

now ms b
im not going to tell you what that means
ill just leave that to your momma and daddy
to explain that to you

im not sure if you have seen this yet
but
dont worry we will expose you to it
before its too late
before it all goes away

you see ms b
there is this big ole yellow bird
no
the bird dont tweeeeet like a bird
the bird dont sing

well ms b
believe it or not
this big ole yellow bird
well
this bird talks to you
at least
on tv

now ms b
the reason we want to get you exposed to this
big ole bird
well
its because this big ole bird may just go away
like
the dodo bird did

it seems theres a push to cut the funding for pbs
thats the public broadcasting system
when you visit our house you will see us watching
the pbs news every night
they dont yell at each other and tell lies
we as well watch their other good other shows
we will let you watch it in the morning
maybe you can see that big ole yellow bird

a few years ago
when there was a push to defund pbs
well
kids got so upset
they told their moms and dads
well
pressure was put on the politicians
they didnt want to be known as the ones that
k***ed that big ole yellow bird

i guess they didnt learn their lesson

now ms b
we are back to where we were
the bird hunters are out again
getting ready to
k*** the bird

ms b tell your momma and daddy and everyone you can
that
you want to
save that big ole yellow bird
Image result for big bird
oh btw
the birds name is big bird

the organicgreen doctor


Monday, March 20, 2017

they should be ashamed

THEY SHOULD BE ASHAMED

these states above in that dark reddish orange color
should be ashamed
note that the district of columbia is shaded that color
which means
in our national capital there is one of the highest hunger problems among
the elderly

shame shame on all our congresspersons for allowing
this to happen
shame shame on those four states that have allowed
this to happen

now in the new budget there are plans to cut federal funding
for block grants which are used to help fund
meals on wheels programs
it takes somewhere between $1500-$2500 to feed an elderly
person for a year

cutting these funds will cost some folks from being cut from
the program

its just mean spirited

now a relative runs a program in one of those states
a real good program
that provides food to a lot of people every day
luckily some of it is privately funded
but
the federal funds contribute a lot to her successful program

i having being delivering these meals on wheels for 6 years
i really think some that i deliver to would become malnourished
maybe starve to death

most of them
split the meal in half like my mother use to do
eat half for lunch and half for supper
without these meals they might not eat at night
or
eat out of a can
or
not even eat at all

its just mean spirited
its embarrassing

for me its embarrassing to live in a state that allows old folks
to go hungry

if you live in one of those dark colored states above
you should be embarrassed too

if you live in the district of columbia
well
thats you congress and the president
you should should be real embarrassed
real ashamed
disgustingly ashamed

again
dont let them do this to our grandparents generation
oops i mean our generation

the organicgreen doctor

Friday, March 17, 2017

alzheimers news-dont defund us now

ALZHEIMERS NEWS-DONT DEFUND US NOW
Image result for organicgreendoctor
thats what i would say to our congress
not now
please
we are on the brink of finding a cure and or treatment
dont stop us in our tracks

much of the basic research that leads to discoveries
that can eventually lead to cures or treatments
for alzheimers and other diseases
starts with the nih and federal funding for this basic research
its where it starts
but
it doesnt ever start without money

let me digress a second
when i retired i became involved in two volunteer areas
meals on wheels
alzheimers
Picture
i have been doing meals on wheels now for 6 years
some of the folks i have delivered to those 6 years
without meals on wheels i think some of those folks
would have starved to death
yes
starved to death here in the united states
here in texas
here in central texas

we cant let this happen
defunding meals on wheels

yes over the last few years several of the folks who were
receiving meals on wheels had alzheimers disease
starving them is not a way to treat the disease
it does get them off the pay roll though
is this a new way to do the death panels

dont let them defund meals on wheels
some things the federal and state government should fund
this is one of them

i certainly would prefer my tax money go to the meals for those
older folks than go to some new canon or boat or ship

Alzheimer's Word Cloud
when i was at the alzheimers research center for my last visit
aside here
i should start my infusions next week
when i was there
there was great concern for the loss of research money for the
alzheimers disease center
some of their research is on the brink
between scientific research and medical research and treatment

back when the nih was cut severely in the mid 2000-2005
there was new research that was promising for cancer treatment
when it lost funding it was shelved for 10 years
then
when the funding came back 10 years later
it now is being used to cure i said cure people of leukemias and other
cancers
10 years too late for many

there is so much alzheimers research ongoing now
some could be the answer to ending alzheimers disease
or adequately treating it
it may and probably will be shut down or possibly discarded

there are 5 million folks with alzheimers disease in the us
in a few decades that number will shoot up to 50 million
that
folks
is when our health care system will be totally overwhelmed

we cant afford not to find a treatment or cure for this disease

we are treading on serious ground if all these cuts come through

why dont you call
give your congress person a good talking to

alzheimers disease like elderly hunger
it dont care what your political party is or your race or your religion
right now
its winning big time

its in our hands to do something
the voter

the organicgreen doctor

Thursday, March 16, 2017

alzheimers news-a students questions my answers

ALZHEIMERS NEWS-A STUDENTS QUESTIONS MY ANSWERS
Image result for organicgreendoctor
hn a high school student is writing a paper on alzheimers disease
so
he emailed me a list of excellent questions
which i answered

i must apologize for using caps and punctuation

 What is the cause of Alzheimer's?

1% of the cases are genetic. The person inherits a dominant gene that makes them get Alzheimer’s.
25% of the patients inherit a gene called apoe 4 that makes them have a higher risk of getting the disease.
Health issues like blood pressure, cholesterol, diabetes, obesity, diet, sleep disorders, lack of exercise, anxiety, stress, depression all can contribute to Alzheimer’s.
The true cause for most cases aren't really known.
All patients with Alzheimer’s Disease develop accumulation of a protein called beta amyloid which forms plaques in the brain. This leads to brain cell destruction. Later a protein called tau becomes damaged. It unwinds, forms tangles which get deposited in the brain leading to inflammation and brain cell destruction.

What is the most affected part of the brain with this disease?
Alzheimer’s Disease starts in the area of the brain called the hippocampus. This is where short term memory is processed. Thus the first symptoms of Alzheimer’s Disease is the loss of short term memory. Then as the disease progresses, it spreads throughout the brain.

What is the average life span with the disease?
It varies from patient to patient. It can be as short as 3 years or as long as 15-20 years. If i was pick an average time i would say 7 years.


What are the stages of this disease?

PreAlzheimer’s or Prodromal Alzheimer’s-there is brain cell destruction occurring but the memory hasn't been affected yet

Mild Cognitive Impairment due to Alzheimer’s-there is short term memory loss but the patient is fairly functional. This is my diagnosis. I am in the early part of this stage.

Alzheimer's Disease-there are more symptoms than short term memory. Patients functions are affected like walking, dressing self, eating, talking, driving etc.

Some break Alzheimer’s down into mild, moderate, severe or early, mid, late

The Alzheimer's Association has a staging system you can find at this link


What are the treatment options if you have it?

There is no treatment or cure for Alzheimer's.
There are medications like aricept (donepezil) that may slow down symptoms but they don't affect the progression of the disease.
my mother, my younger brother, my older brother and i took or take this medicine.
It may help to be aggressive about taking care of your health doing healthy things like controlling your blood pressure, cholesterol and diabetes, getting adequate sleep, maintaining a normal weight, exercising, getting a normal sleep each night, controlling anxiety, depression and stress, and staying active mentally.
These may slow down the symptoms.
Doing these all your life may actually prevent or delay the onset of Alzheimer's Disease.
There are new treatment research studies that are ongoing that my end up slowing down or if we are lucky prevent the disease.
I will be starting infusions next week in one of these studies.
Here is an article from forbes magazine on the aducanumab study


Is there a way to prevent this disease? If so what?

See the paragraph above.

What can loved ones do to help someone with Alzheimer's?

Be there for them. Talk to them like you would normally. Make sure they don't do things that can harm themselves like drive when they shouldn't anymore or wander off.

If you become the caregiver it's always important to take care of yourself. That's something a lot of caregivers forget to do

After studying and knowing how the disease affects the body how does it feel to know you have it?

It has been a gradual process for me. It was overwhelming when i was first told i had memory issues when i volunteered to be in an Alzheimer's research study. Since then i have had more studies done like labs and genetic tests and spinal taps for the amyloid and tau levels and more recently an amyvid pet scan of the brain for the amyloid.
All the tests have been positive so far. I dont have the dominant gene but do carry a double version of the apoe 4 gene which increases my risk by 10-15 times.
Each test as it comes in represents a down time emotionally but i quickly recover. This last test the amyvid scan makes it more certain that i have Alzheimer's Disease.
Lucky for me is it qualifies be for a new treatment study that shows promise called the aducanumab study. I will start next week getting a monthly infusion for 5 years of the aducanumab antibody which attacks and removes the amyloid from the brain. It appears it may delay the disease.

By knowing my diagnosis early it has allowed my wife and i time to accept the diagnosis and allows us time to prepare for our future.

I do not get depressed or sad about have this diagnosis. I have accepted it and have moved on with my life doing what i can to slow it down or stop it but enjoying life while i can.

What can you tell others that may have the disease?

Make sure you have had a good diagnostic workup to include all the medical tests that are available as this makes it more certain of your diagnosis.
Take care of your health doing all the healthy things mentioned above.
Stay busy mentally, physically, and socially as long as you can.
Extract all you can out of every day while your memory is intact.
Be prepared with a will, a power of attorney, a medical power of attorney, a living will, and consider doing a funeral outline. These can make life easier for your loved ones when you can no longer make decisions for yourself.


Dewayne Nash MD, retired physician, Alzheimer’s advocate, Alzheimer’s lecturer, Alzheimer’s patient

Wednesday, March 15, 2017

i am guilty of most of these

I AM GUILTY OF MOST OF THESE
Image result for ee cummings
when i was in school my favorite writer and poet
was ee cummings
the guy who didnt use caps or commas or periods

i decided if i ever became a writer that was what i would
do
not use any of those things
no caps no punctuations

so as you can tell from what youve read so far
that seems to be the case

another thing i like to do but dont always do is
to use the wrong word
like their for there or theyre
yes
i do it on porpoise

i think there is a little defiant boy inside of me
i really think thats why i write like that

as i tell my creative writing reading english teacher my wife she
its my blog i can write and spell like i want to

now
i will tell you
each morning as i write i just put it all on paper
the spell checker goes crazy
its all red squiggling lines all over the place
some i go back and fix
others
well i wrote it that way on porpoise

after i write it and do my posting
my wife she reads it
and
makes suggestions like she would if i was one of her students
now honey you know i would do it this way

some i agree with some i dont

so microsoft did this list of the 10 most common errors done
by writers
even well known ones

so i read them
guilty as charged on most of them
some i do well most of them i do intentionally

1   leave a   space in the writing
some i do by mistake
some i do to separate a line of items or a topic   like this

2   missing a comma
always do this one
ee would be proud i think

3   missing a comma after introductory pause
as i wrote above guilty as charged

4   missing a hyphen
i never push that key on my computer
guilty again

5   incorrect subject  verb agreement
did you catchs that ones
now that one i always do correct unless i do it intentionally

6   incorrect capitalization
like she is good But sometimes she is not
i never have that problem since i dont ever capitalize things

7   mixing up plural and possessive forms
always
smiths dog eg

8   incorrect agreement with non phrases
so what does that mean
its been awhile since i had english class
its misusing this or these
not guilty of this one
i want it done wright

9   commonly confused words
they use breath vs breathe
i dont make that one

10  incorrect verb after auxiliary
dont know what that one meant either
but
i dont make this mistake
their example are like this sentence

so
i am not guilty on four of   these
but
i am guilty as heck on the others

i know this makes some ocd teachers
uncomfortable
but
it feels good when i write like this

i do admit
that since i have been writing like this for 6 years now
it has completely drifted into my emails formal writing
my texts

i do feel like that the future will bring the lack of use
of all these rules
if you dont believe me
just read tweets and texts sometimes

i am glad to just be part of the movement

the organicgreen doctor

Tuesday, March 14, 2017

dont let them do it

DONT LET THEM DO IT
thats what i would say to you
since this could affect many of you
Image result for hr1313

eg
25% of you carry the gene apoe4 which can put
you at the potential risk for having alzheimers disease
as you get older

you can chose to be tested for it
easily through a cheek swab and send it off to some
company like 22 and me
they will check that genetic test for you
as well as lots of others
like cystic fibrosis huntingtons disease alzheimers disesae
etc to name a few

you if you decide to do a genetic test
you freely make that decision
now there are consequences of having that information
especially if it appears in your medical record

first
you should understand what that genetic test means
to you and your family
when i had my apoe 4 test done i sort of understood it
but it really took me some time to read enough about it
to really understand its full meaning

these tests shouldnt be done lightly without some thought
there are social and psychological consequences

you may be finding out you have a terminal disease
are you ready really ready to know that information
some folks cant really handle the bad news

this has ramifications for the family your kids your grandkids
if they could be affected by this disease

then
if this information appears in our medical record
you might not be able to get health insurance if the new health law
doesnt protect you
at best you would be put in the high risk expensive pool

you probably wont be able to get disability insurance

you probably wont be able to get life insurance
or if you do it will be at much much higher premiums

you wont be able to get long term insurance

so
in congress a new law that just went through committee
got passed and will go to the full congress to consider

this bill will allow your employer as part of their wellness program
to test you for genetic diseases
if you decide not to you will pay much much higher premiums for
your insurance
if you decide to do it
then you are at risk to getting fired if certain
diseases show up on your test
and
at risk for having all those problems above from being put on your
medical records

i have seen things from employee wellness programs leak over to the
employer with consequences for the employee

eg
if i had been tested when i was working
i would not have been able to get my long term care insurance
i would not have been able to get my disability policy
that paid me for 6 years after i was diagnosed
a loss of income of several thousands of dollars
i would not have been able to get my term life insurance policy

these decisions to be tested for these genetic tests
need to be kept private
they have important consequences

this bill hr1313 in congress is sponsored by the republicans
as part of the new health care law
its disguised as part of the employer wellness programs

it passed through committee
all republicans voted for it
all democrats voted against it

this is disturbing to me
since it has some much ramifications for so many people
i am not sure
how can it be a partisan issue
how can to be a political issue
since it affects all of us
possibly adversely no matter our political beliefs

is it just caught up in the push to get the new health bill through

for those of you who are republican
you should be concerned about his
if you are carrying a gene for a disease that you are trying to protect
yourself or your family from
if you are considering to get tested on your own timeline
you need to contact your congress person to complain
loudly

there are some decisions that should be left to the individual
this is definitely one of them

the organicgreen doctor

Monday, March 13, 2017

alzheimers news-your questions answered

ALZHEIMERS NEWS-YOUR QUESTIONS ANSWERED
Image result for organicgreendoctor
i get questions about alzheimers frequently after posting the
alzheimers news segment each week
from emails
from facebook messages
after doing my talks on alzheimers disease

in fact
my favorite talk i do
is to simply stand up and answer questions from the audience
families and patients and friends just want answers
many cant get them by reading the internet and asking their
medical providers

i have been through this with two family members
granted i wasnt there for the day to day caregiving that
is so trying on families

i have spent hours and hours over the last 6 years reading
about alzheimers so i have become well versed in
alzheimers and with what research is going on

now
that i know i truly have alzheimers disease
i can now truly speak as someone who has the disease
albeit very very early in the process
but
i know that it can suddenly take off
and proceed rapidly
so
thats why my day to day decisions are based on what could happen

i may be lucky
in that this aducanumab might be the reprieve im looking for
the next 5 years will tell if it really works as advertised

after last fridays blog
i got tons of comments and questions

i was asked and this is a frequent one
what can a loved one do if their affected loved one is more advanced

eg
one person wanted to know if their spouse would qualify for
this study
i asked questions about the spouses health
it was obvious from the answers and the persons medicines
that they were more advanced

i try to be honest with my answers
because i feel like thats what people really want and i would want

i told the asker
no they wont qualify they are too advanced
there really is not anything to do to stop it
my advice is to maximize their health
keep them as mentally physically and socially active as long
as possible
provide love and comfort
and
take care of yourself the caregiver
thats the one that most spouses or kids forget

i was asked several times where and how to get the amyvid pet scans

my reply
they are available at multiple sites in texas
probably most states do them
they are not paid for by insurance companies
they cost between $3500-$5000
i got mine free via the study

here is a link to my blog about how to get one free
if you meet the criteria
http://www.organicgreendoctor.com/2017/03/alzheimers-news-good-ideas.html

not everyone with memory loss needs these
i consider them the icing on the cake test

a memory loss patient should see their primary care provider
or a neurologist for a stepwise complete workup
like
a good medical history and physical looking for causes
basic screening labs
good memory testing
maybe an mri of the brain

most folks can stop there and not need more information
eg
my two brothers got all this done
their diagnoses were able to be made from this workup
an amyvid pet scan would have been a waste of time and money

my mom fell and hit her head and had a ct scan which showed
diffuse shrinkage of the brain
this is caused usually by alzheimers disease

but in cases like mine since i was so early
i had

the genetic tests
note i will write more on those tomorrow on my blog

the spinal tap for the biomarkers amyloid and tau
are helpful in making sure of my diagnosis

then
like i wrote above
the amyvid pet scan was the icing on the cake
now i certainly know
what i have
what will happen if i dont do something
since i have personally seen what happens

another question is
where can i get tested or where can i get involved with research
all primary care  providers can do this testing
if they are not interested seek out a local neurologist or memory care center
like the one i go to

if i was still in practice i would do these workups myself
since i now know more about how to do it now and how to interpret them

if you are interested in being in research
or
if you are interested in being followed on a regular basis like annually
to be closely monitored

in texas
the tarcc group at this link
http://www.txalzresearch.org/volunteer-for-alzheimers-research/

they will start seeing you at 50 years old
even if you have no symptoms
they will do a neurological exam memory testing baseline labs and maybe
an mri
your data is kept in research and should not reach your medical record
why
read my blog tomorrow

for someone who has a family history and is worried about getting it
this is a good thorough way to do it
at no cost to you
anonymously from the medical records usually

other states may have similar programs at most of their
universities memory centers or alzheimers disease centers

for the study i am in
go to
clinicaltrials.gov
type in aducanumab
then type on the studies they are recruiting for
find the nearest location
note this list is not complete
it doesnt have the ut southwestern site listed

here is biogens site about the aducanumab study
https://www.engageandemerge.com/

so remember
if you are worried get evaluated
if you have a family history or want to be monitored do the
monitoring as above
if you want to contribute
volunteer for a study and or donate to the local alzheimers groups
the biggest obstacle to getting alzheimers research done is
money and volunteers
if you are a caretaker
take care of yourself

always feel free to ask me questions on this blog
i screen the questions and post them and my replies
i will answer messages via facebook
i answer lots of questions at my alzheimers talks

my next presentation is at
the 5th annual alzheimers symposium
mayborn convention center
temple texas
friday april 28 2017

i will do my talk that day
then
answer questions after the talk from the audience
then
i will hang around for awhile if folks want to ask
me questions one on one


the organicgreen doctor

Friday, March 10, 2017

alzheimers news-the final answer is....

ALZHEIMERS NEWS-THE FINAL ANSWER IS....
Image result for organicgreendoctor
for those who dont know
my story
here is a brief summary

my mother and younger brother died from the disease
my father may have had it when he died
my older brother probably has early alzheimers disease

8 years ago i had a normal memory test when i was seeking my
long term insurance
6 years ago while seeking to be in the normal group for a large
research study called adni i was found to have short term memory loss
on memory testing

this is when i quit working and started the alzheimers drug
aricept or donepezil which slows down the symptoms
but doesnt stop the disease process
if started early it has better and longer effects in slowing these
symptoms

testing done that was positive were

i carry the apoe4 apoe4 gene that puts me at high risk
maybe 10-20 x increased risk of developing alzheimers disease

testing on my spinal fluid reveals i have low beta amyloid
and high tau levels
this was done 6 years ago
this is associated with alzheimers disease

my mri scans and glucose metabolism pet scans are all normal
early in the disease these can be negative but later
they become positive

i have low b12 levels low vitamin d3 levels
high homocysteine levels
homocysteine if elevated is associated with an increased risk
for heart disease stroke and alzheimers disease
maybe

these levels are corrected by taking replacement supplements
under the care of my primary care doctor
my levels are now all normal

i aggressively take care of my health
i follow dr bredesens protocol from his study
reversal of cognitive decline
again under the care of my physicians

so i have been stable now for 6 years
probably no one notices i have a problem
maybe not even my wife she
but i do

i know that i have alzheimers
deep inside my body tells me
that i do

so all of the things i am doing now
i realize they dont stop the disease
it just keeps marching on from one brain cell to the next
they only slow things down some
i know
that in the end this disease wins

unless
i can find something to stop this disease from marching on
so
for the last 6 years i have been keeping a close eye
on all the research thats going on
looking for the drug that might treat the disease
or at least
slow it down significantly

oh theres real promising stuff out there
but
it may be a decade or more away
too late for me

beta amyloid is a protein that accumulates in the brain of
a person with alzheimers disease
many feel like its the cause of the disease
remove it or prevent it from accumulating may
prevent or slow down the disease

so three years ago i spotted the aducanumab study
here is a good review of it from ucsf memory center

so for me
it seemed to be the one i was looking far
it seemed to work in a preliminary study called phase 1
folks with my diagnosis had all the bad beta amyloid
which is thought to be the cause of alzheimers
removed from their brains
ie
their amyvid pet scans for the beta amyloid which showed
beta amyloid throughout the brain
after a year of treatment it was all cleared out
then
these folks memory also improved
thats the true measure
does it make things better

so if this stuff works
it should stop the disease in its tracks
or
at least remarkably slow it now
so
that
a person with it may die from something else
like maybe old age

so
this was where i was at about a year ago
when i heard this study was coming
i knew i wanted to be in this one

i started the five step process last november
requiring multiple visits to work through the steps
some involving my wife she
i passed all the tests
meaning some of them were abnormal
then
last week i went up the fifth step
the amyvid pet scan for beta amyloid in the brain

if its positive
i have alzheimers disease for sure
im in the study

if its negative
i am not in the study
i just got a big time reprieve

are you nervous
anxious
scared
sad
waiting like this

no i said
this has been going on too long
i also have been open and written and freely talked about
all this
i think it has helped
plus
it has helped to get educational stuff out to folks
many who have now volunteered for research studies

now i did cry when i heard i was accepted just to be considered
to be in the study

so
yesterday
as i pulled up my email
there it was from the
alzheimers disease center at ut southwestern

i am sorry to say dr nash
but
your amyvid pet scan shows that you have amyloid deposits
throughout your brain
i knew this was going to be that way
so it means i have alzheimers disease
especially when you add up my history and other testing

thats the bad news
but
the good news is that qualifies you to be in the
aducanumab study

as soon as we get all the official confirmations
we will set you up for the infusions of
aducanumab monthly for 18 months then another 3.5 years if it seems
to work
i realize i also may get the placebo for those 18 months
my chances are 33% i will get the placebo
but
after that i will be able to get the real stuff
either way i am fine with
because eventually i will get the real drug
Image result for organicgreendoctor amyvid
so in this slide above
on the right is what my scan looks like
all the red stuff is amyloid
then
if i get treatment
in a year my scan will look like that on the left

so am i sad
yes and no
its sort of sad to get this final answer
like being told you got a noncurable cancer
remember alzheimers is usually the true cause of death for those who get it

did i cry
yes i cried yesterday
like when my mom died and my brother died

am i happy
yes i am happy but sad at the same time
i know that i might be able to do something now to slow this down
be involved
with something that may change a lot of folks lives

as of right now
i feel some hope
i am ready to face this new stage in my our lives

i feel like i just won a million dollars
or maybe the lottery

the sad but happy
the organicgreen doctor