alzheimers news-dont wait too long

ALZHEIMERS NEWS-DONT WAIT TOO LONG

as a person advances with alzheimers disease
they can become a handful to deal with
a single caregiver can have a difficult time
doing it by themselves
it make take a village to care for them both
many caregivers develop poor health and get burned out

today i will be giving a talk at the alzheimers symposium
on clinical trials and my story with alzheimers
every time i give these talks
some caregiver will come up to me and ask
i dont know what to do
my loved one has advanced
so that i cant leave them along anymore
i have no family around
they all live miles away states away
i wish that i would have moved back to where our
relatives are and our kids are

i wished that i would have done it sooner
when my loved one could help me make all these
decisions

yes
i agree it would have been good to move
but since you didnt
if it was me i said knowing how i feel about things
i would do it even now before things gets worse

i am sure i will get a question like this today

now i am as sure as a person can be that i have
the early stages of alzheimers disease
the official diagnosis
is
mild cognitive impairment due to alzheimers disease

i am doing all i can to slow things down
living healthy
taking aricept (donepezil)
being in a new treatment trial the aducanumab study that has great
promise to slow things down or if we are all lucky
stop the disease
i realize that after doing this study that it may not work
you just dont know what will happen when the larger studies
get done on these promising drugs

so
if 2-5 years i could be progressed like i would had i not got treatment
or
if this stuff works i will be better or heck ill take where i am now
i dont know
so
as my wife she and i look into the future
there is no crystal ball to find answers

i just know
if i stay here at the country n we will both enjoy every day we live
here and probably wont regret staying
however
if i worsen
living out here away from support mainly for my wife she
she will probably get isolated and overwhelmed like all those
spouses that come up and ask me what to do

i decided that we are not going to let that happen to us

so
we are looking to sell our lovely peaceful country n place
with it being just like we envisioned 15 years ago
to move to the next stage of our lives
we plan to never look back
but
will look forward to the next chapter in our lives

my wife shes family all live in southern california
sisters mother our two sons our niece and most important
our granddaughter
when the time comes
there will be folks around that can give her support
when she needs it
now lucky we have long term care insurance to cover costs
but
its that emotional care for her thats the most important

also
her mom if you know this spunk of energy
is in early early 80s
as i told her
you will never regret spending the last years of her life
with your mom

now
we have been thinking and planning all this for months
not rushing into the decision
we spent several weeks there looking at places
looking at what will keep me especially busy
so
i have found the same things i do here
volunteering at meals on wheels and habitat for humanity
and school and youth gardens and the alzheimers movement
i will have two large garden plots in community gardens
i will continue to give my alzheimers talks like the one i will
do in a few hours from now
answering questions and hopefully giving them much needed
answers
i will also continue doing this blog like i am doing now
on the same topics

so
please continue to join us on our new life adventure

our country n place will be going on the market soon
probably next week
for some lucky person to have and enjoy what we have
i will post the link when it does

one of the biggest things we will miss
something we cant duplicate in southern california
is
drinking rainwater
it will be missed
as
will all of our friends we have made over the years

now
i will be commuting back to dallas every month for my
infusions for the next 18 months to 4.5 years
so
we will be around this area off and on for months to come

thanks
yes we will miss this place
but
we are at peace with our decision



the alzheimers texas symposium in temple starts today
at the mayborn center
it starts at 900 am with my talk
there will be 3 others after that
there will be lunch provided
walk ups are usually welcomed

thanks for all the support the last 6 years

the organicgreen doctor

alzheimers news-protect your heart protect your brain

ALZHEIMERS NEWS-PROTECT YOUR HEART PROTECT YOUR BRAIN

it appears that if you protect your heart in middle age
then you are actually protecting your brain later on in later life
against the development of alzheimers

there is a saying
whats good for your heart is good for the brain

there is an amino acid called homocysteine that is associated with an
increased risk of heart disease and stroke and maybe alzheimers disease
if it is elevated that is

if the level is elevated its easily treated with folic acid and vitamin b12
mine was quite elevated
its now normal using these supplements

like a lot of things in medicine not everyone agrees with homocysteines
relationship to heart disease stroke or alzheimers disease
i personally believe in it
since
if i dont and im wrong then not correcting it can add to my risk level
for alzheimers disease

it seems so easy to fix
so i fixed it

this week i wrote this blog called 23andnotme
about the 23and me company doing these 10 genetic tests
one is for the gene that puts you at risk for
late onset alzheimers disease

the gene the apoe 4 gene
increases your chances of developing
late onset alzheimers disease
by 10-20 times if you get the homozygous apoe 4 apoe 4
by 3-5 times if you get the single apoe 4 gene

whether it does lead you to getting alzheimers disease
is determined
by how well you take care of your health
by environmental factors
by other health issues you may have

some folks with the apoe 4 gene never get alzheimers disease

so i was asked by several folks if they should get tested
i usually say no since if you dont really understand what it means
then you think you got the kiss of death if yours is positive

but
i thought about it some since i was asked
maybe just maybe
if they are positive
that it will scare the beejeevers out of them
to take real good of their health
so the risks from having the gene will be diminished

i must say it worked for me

now dont confuse this with
the dominant gene for early onset alzheimers disease
like the folks on the 60 minute show and the pbs show had

if you get this gene
you are 100% going to get alzheimers disease
at an early age like in your early 50s or younger
this gene represents less than 1% of alzheimers cases

so a recent study looked at risk factors for heart disease
in middle age
obesity   lack of exercise   high blood pressure   high cholesterol
and diabetes
these folks were followed into their elderly years

those folks with these risk factors in middle age
had higher levels of the bad beta amyloid up in their brains
in the elderly years
which is associated with the development of alzheimers disease

so
if you do get tested for the apoe 4 gene
and or
if you are middle age
and
if you
are overweight
and or
lack exercise
and or
have high cholesterol
and or
have high blood pressure
and or have diabetes
thats not well controlled
then you are probably destined to a retirement
that you will not remember

that could be a combo thats almost as bad as having the dominant gene

so my advice to you
if you have a family history of alzheimers disease
if you want to do what you can to not get it
then
in your middle age years
do what i did aggressively at 60 when i was diagnosed
wish i had been this aggressive at 40 or younger


go on a MIND DIET or consider a vegetarian diet

my sister and brother did that and have lost over 50 lbs
and have been able to completely get off all their
blood pressure meds and cholesterol meds
well all their meds
i still have to take mine though
im ok with that

exercise regularly

maintain a normal body weight

maintain
a normal blood pressure
a normal cholesterol
a normal blood pressure

if you dont do all these
then you may be doomed

for those of you who read my blog
who are genetically kin to me
that
is you

yes
i know
new preventions and treatments are coming down the road
but
it may be 15-20 years from now
hopefully my aducanumab stuff will be one of those

as of now
thats what you need to do to slow down the disease process

thats my answer
i give to folks when they say
what i can i do


i will be doing a presentation on
clinical trials in alzheimers disease
at the

5TH ANNUAL ALZHEIMER'S SYMPOSIUM
friday april 28th
at
the mayborn convention center
temple texas

join us
its free
lunch is provided
registration is required
just
click here

the organicgreen doctor

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

alzheimers news-did you know that

ALZHEIMERS NEWS-DID YOU KNOW THAT

did you know that
i have an appointment on february 28th to have my
amyvid pet scan
this scan will show if i do or if i dont have alzheimers disease

if its positive
i probably have alzheimers disease
remember nothing in medicine is 100%
i will be in the study called the
aducanumab study by biogen
i soon after would start monthly iv infusions of the drug
aducanumab an antibody against beta amyloid

if i then get the real thing and not the placebo
my scan in a year will go from brightly positive
to brightly not positive
hoping that it correlates with an improvement in memory

the results should be out in over 18 months
so we will know
if it looks like it works i plan on continuing the
extension of the study for another 36+ months
if it works
i will not want to get off it

my thoughts are that this stuff only works if you get
to the disease sooner even sooner than where i am at now
it will work best probably if used before symptoms start

now if its negative this scan
i got one helluva reprieve
its like being told you dont have terminal cancer after all


did you know that
in texas you can sign up to be monitored starting at 50 years old
at no cost
baylor at houston  texas tech  university of north texas
ut southwestern dallas  university of texas san antonio
these universities are part of a long term study that will do
labs memory tests neurological exams and maybe mri
annually
here is the link to find out more
www.txalzresearch.org

here is the link to where i go
alzheimers disease center ut southwestern

if you have time watch the video my wife she and i
did for the center thats on that page

did you know that
learning a second language early in life decreases your chance
of developing alzheimers disease
these folks develop a brain reserve from using certain parts
of the brain more over the years

you know that
afroamericans have a higher incidence of alzheimers disease

did you know that
by following the mind diet you can lower your chance of
developing alzheimers disease when you get older
heres the link to the mind diet

did you know that
controlling you blood pressure cholesterol weight diabetes
decreases your chance of alzheimers diease

did you know that
if you exercise regularly you can decrease your chances of
getting alzheimers disease

did you know that
poor sleep from insomnia sleep apnea restless legs etc can
increase your risk for alzheimers disease

did you know that
1 in 5 dollars of medicare is spent on alzheimers and other dementias
by 2050 that will go to 1 in 3 dollars

did you know that
smoking increases your risk of developing alzheimers disease

did you know that
head trauma can put you at risk for developing alzheimers disease

did you know that
if someone in your family has alzheimers disease then you are at
risk for developing it

did you know that
you can help find a cure and help others
by
becoming involved in your local walks to raise funds
go to the alzheimers association website www.alz.org
to find out where your walk is
there are also independent alzheimers organizations in some states
or
in central texas
go to the texas alzheimers website www.txalz.org
and or
write your congressperson to encourage them to support
funding of more alzheimers research

we can not afford to not do something to help

a treatment or cure is within our reach
possibly within my reach soon

help us help yourself help your family help others if you can



i will be speaking along with other alzheimers speakers at
the alzheimers symposium in temple texas
on
friday april 28 2017
my topic is my story and clinical studies

there is no fee and a light lunch is provided
here is the link to the symposium for more information
and for registration information
http://www.txalz.org/education/conferences/

the organicgreen doctor