organicgreendoctor: my story revisited #223-i hope they did

organicgreendoctor: my story revisited #223-i hope they did: MY STORY REVISITED #223-I HOPE THEY DID this is a picture from my first walk to end alzheimers in texas around 2011 i think the child a form...

my story revisited #223-i hope they did

MY STORY REVISITED #223-I HOPE THEY DID
this is a picture from my first walk to end alzheimers in texas around 2011
i think the child a former patient in that picture is now a college student

now 15 years later here i am still going strong mentally physically and socially

I wrote the blog below 11 years ago after someone reached  out to me about their spouse asking for advice on what to do

my advice hasnt changed much since then except i would add we now have some hope we did not have when i wrote that blog
i was a couple of years away from starting the aduhelm infusions that eventually removed most of the amyloid plaque from my brain

now we have two medications given as infusions that if started early enough in the disease they can slow mental decline by 30%

i was not fully diagnosed yet but i would be a year later when i had my amyloid  pet scan done for the biogen aduhelm or aducanumab study
it was positive for amyloid plaques which solidified my diagnosis
there are more drugs coming that also will help
__________
12-04-15

ALZHEIMERS NEWS-MAXIMIZE TIME AND HEALTH

that is my advice to the person whose relative developed
memory issues
she contacted me for some advice of what to do
after the evaluation the final diagnosis
that dreaded a word
alzheimers disease

maximize time and health of your loved one
would be my advice

over the last 5 years ive been contacted a lot
about folks family members who have memory issues
some i know them
some i dont know

here is my advice to this person ill call she
and for the care of her loved one i call he

now that the diagnosis is made
first there is no treatment or cure for this disease
he will not get better
he will have a slow decline which can speed up later
he like me will probably miss the true benefits of the
treatment and cure that is in the works
but
at least it will be there for his kids and his grandkids
just like it will be for mine


he will be offered meds
there will be side effects
work through them since if he is on aricept(donepezil) they get better
over time
some folks have side effects to namenda (memantine) like my older brother
did that only got worse
when that happens it has to be stopped
dont let the doctor put him on the $200+ a month namenda xr
when the $15 a month generic namenda given twice a day
works just as well

remember these do not treat or cure alzheimers
they only slow down the symptoms

there are no other supplements or medications that will make
him better
remember if i have alzheimers im real early in the process
thats why i got better
im under no illusions that its gone and that it wont get worse
for the time being im enjoying the lull before the storm

thats what you have to do with him
enjoy the moment with him

now having undergone the overwhelming sense of doom you
get with this diagnosis with myself and my mother and brothers
i understand how you must feel

maximize his health
make sure a b12 level and a vitamin d3 level was drawn on him
if the levels are abnormal he needs to take supplements
you can get them otc
dont do this though without getting levels done first

make sure his health issues like blood pressure and cholesterol
are perfectly under control

watch for symptoms of depression which are quite common
with alzheimers
dont be afraid to have him treated if he does get depressed

make sure he is getting adequate sleep
remember sleep becomes an issue with alzheimers patients as they
progress
i am already experiencing this problem

make sure he exercises every day
no not a gym
have him go for a walk hike ride a bike
make sure he gets up and moves every day

make sure he does those things he enjoys doing

make sure he stays socially active
if he goes to church have him go as long as he can
if he has other activities he likes have him continue to do it
as long as they are safe to do

one thing my sisterinlaw did with my younger brother was he did
what they did church social gatherings eat out at restaurants vacations
hunting camp no he stopped hunting but the social part he took part in
i admire her a lot for this it takes a lot of courage and love to do this

make sure he stays mentally active
if he likes to read make sure he has access to what he likes to read
as long as possible

he is lucky that he is exposed to your energetic family
the youth exposure really is helpful in folks as the disease progresses

my mother use to light up when kids came around to interact with her

remember this affects kids a lot
dont be afraid to talk with them about his condition

be ready to deal with driving if he is doing so
there are places that will do a driving evaluation to tell if he should
stop driving
but when the time comes have him stop for his safety and for others

people with alzheimers can function in many situations for a long
time
let him do things as long as he can

make sure all the legal papers are done
now
this is a mistake a lot of people make
once the courts get involved if you dont it becomes a mess
will power of attorney power of attorney for health care living will
some do a no cpr form now so when things are worse it can be used

then
there are memories still there
short term memories are gone first
but
long term memories are still intact
this will be your last chance to pull out those memories of his
childhood and family and what he thinks of things
once its gone its gone
deep regrets on my part that i didnt do this with my affected family

then
become quite familiar with this website
www.alz.org
its the website of the alzheimers association
a lot of caregiver information is there
you and your family will need it
there is a local chapter in most states
in this area
its the capital of texas branch
www.alz.org/texascapital/
these folks are there to help you in this time of need
use them

then
here is a link to a blog that i follow
this person took care of his mom through her bout with alzheimers
its one of the most read blogs on alzheimers
it has a lot of caregiving information
www.alzheimersreadingroom.com (THIS WEBSITE NOT AVAILABLE ONLINE NOW)

also if its happening in alzheimers research it shows up there also

then
every friday
i write on alzheimers disease in this blog
if it happens in alzheimers disease i know about it also
i hear from a lot of people across the us about their situations
of course i write about myself some when it has to do with
my diagnosis

also
help us find a cure

i am sorry this has happened to your loved one
this awful disease
you have some time left
it varies from case to case
make the best of it
extract all you can from the next few months and years
__________
my advice to them and to others havent changed much
i would recommend they consider the new antiamyloid drugs leqembi and kisunia if the loved one was in the early stages
it may slow things down some

i would also recommend they watch the clinical trials closely since several new drugs are in stage 2 and 3 studies

also several old drugs used for other things are being looked at
even lithium is being investigated

besides the www.alz.org website i would recommend you following beingpatient.com a great source of information that is kept up to date
you can search my name and see a 50 minute interview i did with them

start early
take care of you health as young as possible
get evaluated early in the disease 

we want someone to be able to carry that white flower at the alzheimers event one day for the first one to be cured

i want it to be me

the organicgreen doctor

organicgreendoctor: my story revisited #222 -my videos tell my story

organicgreendoctor: my story revisited #222 -my videos tell my story: MY STORY REVISITED #222-MY VIDEOS TELL MY STORY about 4 years ago i did the above video for being patient they had read the article in the n...

my story revisited #222 -my videos tell my story

MY STORY REVISITED #222-MY VIDEOS TELL MY STORY


about 4 years ago i did the above video for being patient
they had read the article in the new york times where i was interviewed about being in the aduhelm clinical trials

the video is about 50 minutes long
i had never gone back and watched it since i was interviewed

last week i was watching the video below about a patient similar to me and his spouse
after i finished watching it i thought i will watch my video above and compare what i said and he said
so i searched on the being patient website and found my video and watched it

that picture on the video is me giving a talk and a q and a session for a group in austin texas about 10 years ago
That video is also online and i went back and rewatched it also
it is below 



in this video i talk about studies that have since failed
the solanezumab study the a4 study the colombia study the sniff study
none of these were successful

however
my study the aduhelm study i mentioned gave me 34 months of aduhelm infusions of an antibody that removed the measurable antibody plaque from my brain
then
not long after that the aduhelm cousin leqembi finished its trial
it is slightly more successful than aduhelm
biogen which marketed both of then dropped aduhelm and put all its effort into the leqembi treatments that the patient below took
aduhelm is off the market now

one month after i gave the austin talk i got the results of my amyloid pet scan
it was positive for amyloid plaques
i was then accepted into the study where i received 18 months of placebo and 34 months of aduhelm resulting in the removal of those amyloid plaques

the plaques will eventually reaccumulate so you have to get on a maintenance dose to keep them from coming back
i am working on seeing a neurologist that will give me leqembi which is now available as an injection you can give at home

oh my how things changed in the alzheimers world

there are now thousands of us like me and the pattient below who have been treated

i consider us the lucky ones
so far

what i realized in watching first the couples video then my two videos is how far the evaluation and treatment of alzheimers has progressed in the last 15 years since i was diagnosed

we now say as i say in the video that some hope is better than no hope at all 


our cases are similar
he has apoe4 apoe4 like i do
he took or is taking leqembi an antiamyloid antibody that removes amyloid plaque from the brain
i took aduhelm leqembis cousin that has removed all the measurable plaques from my brain

he is doing all the healthy things one should be doing to slow this down
things like staying active mentally socially and physically
eating a good diet like the mind diet
get adequate sleep
treat anxiety depression and stress
avoid meds or drugs that can make it worse
avoid excessive alcohol
dont smoke
control diabetes cholesterol and blood pressure
avoid obesity
do all of these starting when you are young 

he is taking aricept or donepezil to slow down symptoms
it doesnt stop the disease

they are staying busy like my wife and i are
not letting the diagnosis slow you down

if you are in the alzheimers world watch these three videos
there is a lot of helpful information for you and your family

and some hope

be sure and follow the being patient website
any new things that happen in the alzheimers world will appear there

listening to others who are going through this may help you 

be proactive

there is some hope now

the organicgreen doctor

organicgreendoctor: alzheimers news- what would i say to my 40 year ol...

organicgreendoctor: alzheimers news- what would i say to my 40 year ol...: ALZHEIMERS NEWS-WHAT WOULD I SAY TO MY 40 YEAR OLD SELF when i turned 40 years old i had just finished a 2 year stint doing full time emerge...

alzheimers news- what would i say to my 40 year old self

ALZHEIMERS NEWS-WHAT WOULD I SAY TO MY 40 YEAR OLD SELF

when i turned 40 years old i had just finished a 2 year stint doing full time emergency room doctoring and switched to a full family practice 
it was at that time i did my first cholesterol check
it was sobering 
knowing what i know now and what medicine knows now i should have been more aggressive in keeping those cholesterol numbers at a normal level

why
heart disease
stroke
alzheimers

those are the main reasons 

my initial total cholesterol was over 300 and my ldl cholesterol was well over 250
normal is less than 200 and less then 100 respectively

it would be almost 20 years before i got on a statin to lower those levels
luckily i changed my diet increased my exercise and kept my ldl in the 130-150 range with diet changes

not good enough as we know now

i wander how much crude build up occurred in my arteries and in my brain
luckily studies of my carotids and heart have been normal so far
multiple brain mris have been normal
my brain well maybe not so good since i was diagnosed with mild cognitive impairment due to alzheimers disease at 60

would controlling my lipids for another 20 years made a difference

probably 

i have been on statins now for 15 years and keep my ldl less than 100.

my blood pressure was always borderline
in 1990 when i first had my lipids checked the accepted level of blood pressure was 140/90
now it is 120/70

my blood pressure is now below that 120/80 level

what if it had been maintained at that level for those 20 extra years

what if

luckily for me i changed my diet exercised regularly playing sports running and riding bikes
i changed my diet

i usually got adequate sleep unless i was doing an overnighter in the emergency room or was on call and was up all night

the job was stressful at times but i think i handled it ok
i never was a heavy drinker and i quit smoking at 24

so some of what i did and changed when i turned 40 probably helped some
things might have been worse
a early stroke an early heart attack or alzheimers in my early 50s

so i would tell my 40 year old self
control your blood pressure and cholesterol with medications
keep doing all the healthy things you are doing

now 35 years later and looking at what i know today
what would i tell myself in 2026 if i just turned 40

get on statins and get your ldl below 100 if not lower
get on blood pressure meds to get your blood pressure to less than 120/80

get on the mind diet

get 7-8 hours of sleep a day

control stress

get regular exercise

check your apoe4 status
if its positive for apoe4 or apoe4/apoe4 then get really aggressive with all your prevention methods

the abnormal lipids ie cholesterol i have are related to my apoe4 gene
it controls lipid metabolism

they are looking at research that will change the apoe4 to apoe2 which be a game changer
however that is probably years away
those who are lucky enough to have apoe2 gene tend not to get alzheimers

i must add that checking your apoe4 can be sobering if it is positive
dont do it unless you really understand what it means
and if you cant handle the positive result

remember that about 25% of you will be positive for the apoe4 gene

the good thing is that a lifetime of good healthy living doing all the things one needs to do to slow down the disease can counter having the apoe4 gene

i just wished i had got started sooner like maybe when i was born
that is when your kids should start

if you share genetic dna with me you are at risk
start today even if you arent 40

avoid alcohol and tobacco

if you apoe4 is positive consider getting the new blood test done for alzheimers when it becomes available this year
if its positive seek out a new clinical trial for treating patients with positive tests and no symptoms
i really believe this is the point where treating patients will make a real difference
like i was at 40 and 50

for me i think when  i was accidently diagnosed at 60 i was in the early early stages of the disease process and this is why i am still doing ok well better than i was 15 years ago

starting aricept or donepezil and getting my amyloid plaques removed from my brain  with aduhelm infusions and doing all the other healthy things 
that's why im better

soon that is the way folks will be doing is treating themselves long before symptoms start with these new alzheimers medications

you can do that now by doing all these healthy things now to slow down the disease which can take years to cause symptoms

yep thats what i would say to myself then and now
be
proactive

the organicgreen doctor

organicgreendoctor: dont listen to them

organicgreendoctor: dont listen to them: DONT LISTEN TO THEM c alifornia public health department not these guys listen to them dont listen to the federal government new guidelines ...

dont listen to them

DONT LISTEN TO THEM

california public health department
not these guys
listen to them

dont listen to the federal government new guidelines for immunizations

I will go through a list of those that have been eliminated by rfkjr and not your friends or your kids friends

rotavirus
young families now dont have to worry about this one since their kids get immunized against it in early childhood
unless of course you dont immunize them
i have taken care of many a dehydrated infant from rotavirus diarrhea and gi symptoms
yes i have seen kids die from this

now parents who follow the rfkjr immunization schedule will need to worry about this
i think of it as the infant and toddlers norovirus

hepatitis a
we should never see a kid with this disease ever
but now we will
kids are a hands and mouth person 
hepatitis a is easily transmitted this way
yes i have seen kids with this and they can get real sick

Hepatitis b
this is a bad one to miss
getting hepatitis b can lead to liver failure
most kids that get it catch it at birth
getting the shot at delivery protects the baby from catching it later in life also

influenza ie flu
i have treated a lot of kids with this infection every year when i was working
sometimes they would have to be admitted 
if most of us get the flu shot it makes a difference in how much it spreads
yes kids and grandparents can die from the flu

Meningococcal meningitis 
yes i have seen cases of this
many ended up in the morgue
if missed early on catastrophic things could happen like permanent brain damage death loss of limbs blindness and more

covid
granted its not as bad as it was when it first started
now it is attenuated and is usually like the flu
yes there are still deaths from covid just like with the flu

so what should a parent or patient do for correct information
some but not all state healthy departments will not follow rfkjr guidelines
eg the california public health department link above is a good one

for kids the american academy of pediatrics or the american academy of family physicans
for adults the american academy of family physicians or the american college of physicians

just like they did with covid the anitvaxxers will cause more deaths and harm to our health by encouraging americans to follow these new guidelines

trust your doctor organizations

our grandson mr h is immunocompromised from the meds he takes for his kidney transplant
luckily he was immunized against most diseases before he got his kidney transplant at 2 years old
some he got earlier than recommended 
eg
the chickenpox or varicella he had both of them however he has no immunity against chickenpox so if he gets exposed to chickenpox or a close contact with someone with shingles he has to go to the hospital to receive a varicella or chickenpox antibody treatment
he also has reduced immunity to measles

he like all other transplant patients and immunocompromised people rely on herd immunity to prevent outbreaks
in other word the rest of us being immunized protects those in our community who are vulnerable to these infections
people like new babies pregnant women premature babies cancer patients elderly folks anyone on immunosuppressive drugs and of course transplant patients

we all should do our part to protect our communities
we all have someone in our family and friends that needs this protection

in our we have someone with rheumatoid arthritis ulcerative colitis congenital heart disease asthma heart disease diabetes obesity and cancer that need protection with immunizations and herd immunity

i tell folks that i dont want to die from something i could prevent
so should it be with our kids and our vulnerable family members

dont let them do it to us again

the organicgreen doctor