alzheimers news-here comes round two

ALZHEIMERS NEWS-HERE COMES ROUND TWO

i am preparing for two presentations over the next 3 weeks
one an alzheimers panel that i will be on answering questions about having mild cognitive impairment from a moderator and the audience at ucla medical center in santa monica
then
another doing a 20 minute presentation on telling my story with my diagnosis followed by questions from the audience at the valle verde facility in santa barbara
then
a usc professor wants to interview me about being diagnosed while i was practicing medicine

then
yesterday and the day before i started the long term extension that will last another two years and maybe longer of the biogen aducanumab study
this time i will either get the 3 mg dose or the 6 mg dose of the aducanumab

since i have the apoe 4 apoe4 gene i cant get the larger 10 mg dose since apoe 4 folks run the risk of having brain bleeds on that dose
the 10 mgm dose is the dose in the phase one study that worked the best
it cleared all the amyloid out that showed on the original amyvid scan in the phase one study
my two doses that i might get still cleared most of the amyloid but not all of it

in the first part of this phase three study im in now i either got the placebo or the other two doses
if i got the real stuff then they leave me on that dose
if i got the placebo then i get randomly the 3 mg or  6 mg dose
i want the 6 mg dose
well actually i want the 10 mg since i dont mind a little brain bleed
since
the option of doing nothing
well
that option is a hell of a lot worse than a little brain bleed
especially since most folks recover from the brain bleeds without effects
in fact if you get a bleed they just lower the dose then work the dose back up to the original one

i am so glad to get rid of the placebo cloud
have i lost ground by being on the placebo or have i wiped some of that bad stuff outa there

so all this alzheimers stuff plus getting ready for the alzheimers walk in november
see below
i feel almost like i have ptsd
i had to rethink about all thats happened in the last 10 or so years re alzheimers in my life
most if it is not good
my mother died
my brother died
my older brother was diagnosed
i was diagnosed
i had to quit work
i have made it my mission to go out there and talk about it freely
you ask me ill talk about it
i can see how ptsd folks do better being in the open and talking about their issues

i worry about not seeing my grandkids graduate from high school
i especially worry about not being around when mr h will need a lot of help
i worry about my wife she when she has to be a caregiver
i worry abut my two sons
i worry about my other siblings
i dont want any of them to have to deal with this
i think about my dad dying of a heart attack
i know he was headed down the alzheimers journey
man he spared himself and all of us a lot
i think about my mom and brother going down that alzheimer path to the end

when i do all these alzheimers things i do
sometimes its hard to make myself do them
i feel sad but no im not depressed
dont worry i get screened 4 times a year for depression
i cry sometimes as i practice my presentations or write my blogs
but
it really is therapeutic for me

i really hope that others can learn from what has happened to me
especially
the caregivers
please please take care of yourself


so
off i went yesterday afternoon
i had my amyvid pet scan that shows that bad amyloid upstairs in  my brain
thats the one that on me looked like this 18 months ago

they gave me the radioactive stuff in an iv then waited 30 minutes then into the pet scanner i went
with it whirling whirling sounding like a washing machine spinning a load of clothes
when its over
what i would give to just take a look the screen

since then i would know
did it work did it work
or
did i get the placebo
ill never know

for now im looking forward way out into the future as far as i can see
im never looking back
only forward

im doing all i can to slow this down
but
will all im doing work

donate and or walk with you local alzheimers walk

my younger brothers team in the south arkansas walk to end alzheimers on saturday september 22nd is called
#joe nash
click above to see his team page

his course with alzheimers bothered and bothers me a lot
we were a year apart
he died not long after i was diagnosed
when i looked at him as he worsened i felt like i was looking in a mirror
i really thought when i was diagnosed that today i would be where he was when he was first diagnosed

if you live in south arkansas and know his family show up tomorrow and support them
and the fight against this disease

it means a lot to them

my team in the santa barbara walk to end alzheimers on saturday november 3rd is called
organicgreendoctor

click the link above and donate and or walk with us

the organicgreen doctor

alzheimers news-its not my drug

ALZHEIMERS NEWS-ITS NOT MY DRUG

several folks contacted me yesterday asking if the drug that was in the news was my drug
it was on a lot of tv channels and on my newsfeeds yesterday and today

that drug is called ban2401
my drug is called aducanumab
both are made by biogen


ban2401 attacks the amyloid at a particular site called protofibrils
aducanumab attacks the amyloid at a different site
both drugs grabs the amyloid and removes it
both are antibodies against the amyloid given as an injection or an infusion

ban2401 is about 2-5 years behind my drug aducanumab
ban2401 is in phase 2 studies
aducanumab is in phase 3 studies

the aducanumab phase 3 study ends for me after my next 2 infusions in 6 weeks
others in my study are further behind me
there are about 1200+ of us in the aducanumab study

it should be all finished in 2019 with the final results out probably 2020
it could be on the market the following year or two pending fda approval
ban2401 wont be available if it continues to do well until 2021+

dont worry starting in october i begin to definitely receive the aducanumab and not the placebo and will receive it for another 18 months or longer
that should carry me into 2020 when the results come out
if it doesnt work then ill stop it
if it does work then ill probably stay on it since they usually will continue the studies for a long term after that
ie
im covered for now

ban2401 in this phase 2 study didnt work except at the higher doses
it worked best in folks like me with the apoe 4 gene
this higher dose study has only about 200-300 folks in it
the drug in the higher dose not only removed the amyloid
but
the patients memory improved by 30% on the memory tests they used


aducanumab results from nature

my drug aducanumab in its phase 1 study on 100+ patients also worked best at the higher doses
the amyloid was mostly removed
the higher the dose the more removed
also all in the phase 1 study had improvement in their memories
except
those who received the placebo
it always sucks to be in the placebo group

so unlike the ban2401 drug it worked at the lower doses just not as strongly
the folks in the phase 1 study of aducanumab have now been followed for over 5 years
they have continued to have less amyloid in the brain and have showed continued improvement in their memory

my aducanumab drug also has higher side effects at the higher doses
in fact in the phase 3 study they dropped the highest dose because of the side effects
the biggest side effect is micorobleeds that may occur as the amyloid plaques are removed
a side effect that most of us with this disease would readily accept
but
the fda doesnt like them

when my drug aducanumab publishes its results next year or next expect the same hype that the ban2401 is getting now
the difference is that it will be available first for treatment for alzheimers disease

it probably will be used in folks with prealzheimers disease
prealzheimers disease is where many of you are
you dont have symptoms but your amyloid pet scans and or your spinal fluid for amyloid are positive
you just dont know that yet

it will be also used in folks like me with the diagnosis of mild cognitive impairment or those with mild alzheimers
it probably wont be used in moderate to severe alzheimers since by then so much damage has been done that little gain will come from using this expensive drug on those patients

getting diagnosed early is going to be important in the near future if you are going to be able to stop or slow down this disease

in the meantime be aggressive in taking care of your health

the early the better is the rule

so thats my answer to the question
is this your drug

the organicgreen doctor

alzheimers news-is there room

ALZHEIMERS NEWS-IS THERE ROOM

thats the question raised by a recent rand corporation study on
what would happen if a treatment for alzheimers disease
came on the market

well that very likely will be a reality in less than 5 years
if some of the drugs show promise in fighting this disease
get approved for use

biogen which makes the aducanumab drug i take each month
sponsored the rand corporation study

the result of the study i am in will come out in 2019
if the results are promising the drug will be approved
soon after that

they probably will go after folks who have changes in the
brain already of alzheimers they just dont know it yet
the prealzheimers or prodromal state
ie normal memory with positive scans
and
those like me with early symptoms

if you are too far long with the disease its probably too late
to get treatment

now recently in this blog i wrote titled
alzheimers news-can we afford it
that we basically may not be able to afford these treatments
at the same time we cant afford not to do them

lets say in 2020 a new treatment becomes available
there are literally thousands of people no thats millions
in just the us who will fit the criteria for treatment
eg
me when i was 55 i would have had a positive scan
thats when if not earlier i would have wanted to get treated
to get maximum effect from the drug

so what would it take to get diagnosed and evaluated
to qualify for treatment

first
you go to a doctor usually a specialist like a neurologist
a geriatrician or psychiatrist
its usually a neurologist
there arent enough of them available
now remember we are talking about several million folks
needing to see the specialists
can you imagine the back load of appointments just to get
seen
then
the work up will include probably the amyvid pet scan
for the beta amyloid
its the stuff that the aducanumab removes

remember we are talking millions of people here
after finally getting into the neurologist
now need the amyvid pet scan
there are not enough scanners that do this in the us
to do all the scans that will need to be done

can you imagine the delay its going to take to get
your diagnosis

then
this stuff will probably be given in infusion centers
the ones where things like
chemotherapy is done
infusions for ms connective tissue diseases like rheumatoid
lupus ulcerative colitis psoriasis etc

you can see the backlog that will build up just to get the infusion
whenever you finally get diagnosed
then
especially early on
will there be enough drug available for all these folks who
will need treatment

the rand corporations conclusion is that it will probably take
18 months to get seen and get diagnosed before receiving
treatment

as those of us know who are familiar with alzheimers know
those two years are a long time in alzheimers time

it is predicted by the study that starting in 2020 over the
next 2 decades over 2 million people will develop alzheimers
waiting for diagnostic studies and treatments

we will be at the finish line but we wont be able to cross it

i feel like those of us needing treatment
are like charlie brown when he goes to kick that football
lucys gonna pull it away at the last minute

the organicgreen doctor

alzheimers news-are these three the ones

ALZHEIMERS NEWS-ARE THESE THREE THE ONES

i am waiting for the one
that will carry us to the promised land
that promised land of no more alzheimers disease

it might be within our reach now
if these three drugs pan out to work
to slow down or stop alzheimers

aducanumab

thats my drug
that i get monthly infusions of

its undergoing clinical studies now that will be completed in 2020
it works by
removing the bad beta amyloid from the brain
removing the plaques from the brain
stimulating microglial cells to clean up damaged areas in the brain

it showed much promise in phase one studies
it removed all the measurable amyloid plaques fron the brain in those studies
those folks also noted memory improvements

if this stuff works then this will be one way to treat folks with
the early symptoms of alzheimers disease or those with no
symptoms yet but who are in that prealzheimers state that can last
15-20 years before alzheimers symptoms start

bace inhibitors

these come in pill form
they block the formation of the beta amyloid in the first place
so there is none to be deposited in the brain
thus
alzheimers disease will be slowed or prevented
those studies are ongoing now in folks with mild symptoms
and those with no symptoms yet but who are in that prealzheimers state

eg
my brother would have started in that state in his late thirties
or early forties
i would have started in that state in my mid forties to early fifties

gamma secretase modulator (gsm)

this article describes who rudolph tanzi is
he is called the rock star of science
a well known alzheimers researcher
i have seen him on ted talks and on many of the alzheimers specials
that have been on tv

he and fellow researchers have developed this brain in a petri dish
that develops alzheimers disease
it the brain in a petri dish develops amyloid plaques then develops
tangles the hallmark those two of alzheimers disease

adding the gsm drug to this petri dish
makes the amyloid plaques go away or not form and there is no
formation of tangles

its the amyloid accumulation and the tangle accumulation that causes
brain cell death in alzheimers disease

the theory is
give this gsm pill to folks and none of this stuff will happen
no amyloid accumulation
no tangles
no alzheimers disease

studies will start on this drug in 2018 on humans
if it works in humans
its a huge discovery in helping in ending alzheimers disease

so
if these three things do work
we will know in about 3 or more years
then
i will get up each morning
take my bace inhibitor pill
then
take my gsm pill
then
once a month i will go to an infusion center to get my
infusion of aducanumab
and
if it really works all this stuff
i wont ever get alzheimers disease
which
i must add
i really fear like you of having that happen to me

remember
we need financial support to fight this disease
and
emotional support to deal with it

join us as we walk this year

we will be doing the
alzheimers texas walk in georgetown texas
on saturday september 23rd
team name is organicgreendoctor

i also will have a team in the
santa barbara walk to end alzheimers 
on saturday october 28th
team name is organicgreendoctor.com

join us

the organicgreen doctor

alzheimers news-a students questions my answers

ALZHEIMERS NEWS-A STUDENTS QUESTIONS MY ANSWERS

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

http://www.alz.org/alzheimers_disease_stages_of_alzheimers.asp

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

https://www.forbes.com/sites/quora/2016/12/14/aducanumab-is-showing-promise-as-an-alzheimers-treatment-but-its-still-early/#4cea90b56567

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

alzheimers news-your questions answered

ALZHEIMERS NEWS-YOUR QUESTIONS ANSWERED

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

neurology appointment

Walk to End Alzheimers
click here to donate or join 
the organicgreendoctor.com team

click here to find your local walk 

NEUROLOGY APPOINTMENT
today i am going back for my almost 2 year follow up
since i was diagnosed with mild cognitive impairment 
amnestic type that stage right before full blown alzheimers
disease takes off

today i went back and read some of my blogs about that
time period
here are the links to those blogs

last day thanks
the dreaded doctor visit
the neurology visit

since that time i have retired and am on medical disability 
for my diagnosis because of the risk of making a medical
error because of my short term memory loss

i know from testing that i carry the apoe 4 genotype which makes
these symptoms likely to be from alzheimers disease
i also have an indeterminate testing results for tau protein 
and beta amyloid in the spinal fluid
(those are the two biomakers that are abnormal in this 
alzheimers disease thing)
i have a normal mri normal glucose metabolism pet scan 
normal screening labs 
and a consistently abnormal neuropsychological exam
ive had eight of these since the beginning of all of this 
and one was an eight hour one 
(thats the one that convinced the disability insurance to 
pay on my claim)

i have a strong family history of alzheimers disease
my mother died in the final stages of the disease
my father may have had the disease 
my younger brother now has the disease and is in 
a long term care facility

i am on aricept (donepezil) for the possible alzheimers disease
its really the only thing that helps
but it does not affect the progress of the disease
just the symptoms 
maybe
its all there is for now

i am staying active mentally and physically 
i dont let this drag me down 
at least im alive and healthy and am doing a lot of things
that i am enjoying
except of course im not practicing medicine which is what 
i enjoyed the most 

there is a test that may give me the definitive answer
its the beta amyloid pet scan
ive had one already and will have another next year with the 
study that im in 
the (adni) alzheimers disease neuroimaging initiative

but they dont give me the results
it would be the piece of the puzzle that im missing

the test is now available commercially in some areas
the amyvid pet scan
they inject a radioactive substance that attaches itself to 
any anyloid deposited in the brain 
if amyloid is present it will show up as red highlighted areas

if i have no amyloid present then there is a good chance that 
my symptoms are not from alzheimers
not definite but as definite as you can be

if amyloid is present that doesnt mean you have alzheimers but
it implies that you might

i want the test to add to what i already know

now we just need a treatment to stop or slow this disease down
if my test is completely normal i might have a chance if this 
disease shows up later for that treatment that is coming

otherwise my generation has missed out on the cure or treatment

but at least i will know 
i want to know

its like having metastatic cancer
theres no treatment 
but i want to know if its metastasizing
so i can speed up my planning for the rest of my life

i want to know

the organicgreen doctor