alzheimers news-do you match

ALZHEIMERS NEWS-DO YOU MATCH

recently i was contacted by the alzheimers association for
an interview
they wanted to know more about the trial match program

i was contacted by a writer from the los angeles area who wanted
to interview me about the trial match program and other ways
folks could get involved with the research studies

what was to be a 30 minute interview turned into an hour interview
with a later call back for more information
we discussed the trial match program and the nih clinical trial program
then
he asked a lot of questions about my story and how i was diagnosed
and how i am doing now

an aside
here are some links i gave him that were about my story
here is a clinical trials link to a short paragraph about my involvement
its the 3rd one on the page
here is an article from the austin paper 
here is a video on my story from ut southwestern
here is a newsletter from the ut southwestern alzheimers center


since it had been over 7 years since i had entered my information
in the alzheimers association trial match program
i signed my wife she up to review how it was done
the link is www.alz.org you click on research
there is the trial match tab
which i clicked on and entered her information

now she doesnt have any risk really for alzheimers disease
however
she matched with close to 40 studies in the california area

yes
they need  healthy volunteers
many are used as the controls for some of the studies
they need caregivers or potential caregivers for studies
they need folks for healthy living studies

as i discussed with the writer this week
the two big limits on alzheimers research
that is slowing down our discovery of a treatment and or cure
are
money
volunteers

who would have thought that not having enough volunteers
would keep us from finding a treatment or cure

yea
who would have thought

no matter where you live
there is a study that you will qualify for that will be nearby

eg
some of the drug companies that have a drug similar to the one
i am on (aducanumab)
have spread their study sites almost uniformly across the us
so that most of you are near a treatment site

if you are over 50 and share my dna you may qualify for these studies
where people will be treated before the disease shows up
many of you are 10-20 years away from the symptoms showing up
then
sorry to say if you wait until then its really probably too late

without volunteers the research will not be done fast enough

the study i am in hasnt filled up yet
even after a year
and
this is the most promising study that has the potential to be the
first drug that will actually slow the disease down
whats the limitation
getting folks to volunteer

this is the point i hope he makes when he writes about the
interview
is that we need folks to volunteer via trial match
or clinicaltrials.gov to help us in our fight to find a cure

yes
it takes a commitment to do this
but
it wont get done if you and others dont get involved

so
even if you are in doubt
got to trial match and sign yourself up
even if all you do is see what studies you qualify for
here is the direct link to trial match

i can say that
when i die
folks will look at my obituary
and
say he did his part
he contributed to finding the cure for alzheimers diease

we need your help

the organicgreen doctor

alzheimers news-diagnose before any symptoms

ALZHEIMERS NEWS-DIAGNOSE BEFORE ANY SYMPTOMS

this is world alzheimers month
its the 6th leading cause of death in the us
some think its number 4
in the county we are living in it is the 4th leading cause
of death here
there are 5,000,000 folks with the disease in the us
by 2050 there will be 16,000,000 folks in the us with this disease

i read this article from the wall street journal titled
an alzheimers diagnosis-before any symptoms

now i found the article interesting
if you want to know about getting diagnosed earlier
for yourself or your family
you should read this article
heres the link to it

now i didnt need to read this article to learn about
all of this
as
i have lived this the last 7 years

as i have meandered through the private neurology world
then the alzheimers research world as a patient

as i have written this blog researching what i write about

as i have given lectures on alzheimers disease

as i have answered questions from folks at q and a sessions

i have learned all this stuff thats in the article
first hand i must add

i read today about a new research study thats starting up
it will run for 8 years at usc and other universities
folks who are diagnosed with

prealzheimers disease-folks with  no symptoms but with positive tests
or
mild cognitive impairment due to alzheimers disease-folks with mild
symptoms but with positive tests

will be given one of these
an infusion of a vaccine like the one i am getting now at ucla
or
a pill that prevents the bad amyloid from being produced and
deposited in the brain
or
those unlucky ones will get that placebo thing

the question of whether identifying folks before they get symptoms
or when they get early early symptoms
then giving them treatment long term
will it make a difference
we will find out in 8 years

although
studies like the aducanumab study i am in or the crenezumab study thats
on going now will partially answer that question in 5 years

we are on the brink
of finding an answer

in this article all the testing they write about
has oozed over from the research world into the private medical world
such that these tests may get done by a private neurologist
seeing you or a loved one for the workup for memory loss

so in 2010 if you could fast forward that to 2017
if when i went to the neurologist
even before i had a memory test done

i could have had
memory tests which would have showed short term memory issues

genetic blood tests for the early onset or dominantly inherited gene
and for the late onset alzheimers gene the apoe 4 gene

spinal tap analysis for the beta amyloid and tau
these levels become abnormal as the disease progresses

an amyloid pet scan that would show if the beta amyloid was present
if you have even early alzheimers it will be positive
if it is negative you probably dont have alzheimers

we are almost there now to be able to identify if you have it
before symptoms start
these studies like the ones i have been involved in will show
if this is true

now
a lot of thought and preplanning needs to be done
before you have these done
especially if you are in the prealzheimers state

it can be i must say quite overwhelming to get the results
i liken it to finding out
that you have huntington disease
or
that you have a terminal cancer

it requires a lot of soul searching and contemplation
to get these diagnoses
the end result is the same
all ending in death from the disease
some quicker than others

this may be the limitation of folks having the testing
for alzheimers
they might not be ready to know

organizations like the alzheimers texas and alzheimers association
and us against alzheimers can help with the process

you
can take care of your health
can get involved in the support of research and education
by
volunteering with these groups
helping us with our walks to raise money to help the fight

go to the alzheimers texas site www.txalz.org to find the central texas
location of their walks

go to the alzheimers association site www.alz.org to find their walks
located all across the us

we cant do it without your help

my walks


alzheimers texas williamson county walk september 23rd


santa barbara walk to end alzheimers october 28th

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

it takes a volunteer

IT TAKES A VOLUNTEER
there are a lot of organizations that do good for other
folks
they do it with mostly donations and volunteers
and
they probably do a better more cost efficient job
than
if it was run by the federal or state government

when i retired i looked for volunteer opportunities
that fit me and what i felt was important for folks

thats why i chose
the meal on wheels programs
the habitat for humanity
and
of course since i am so personally affected
the alzheimers association

all good organizations
mostly privately funded by you and me


the one i put the most effort and time into
is the
alzheimers associaton
as
without this organization and its political and social
voice
not much would be happening in the alzheimers world
they just wont let the politicians off the hook

when i volunteer
i like to volunteer and not be on some big old
committee that just sits and talks and really
doesnt get out there and do
the blue collar work

so with the alzheimers association
i am on three committees that organize the
walk to end alzheimers
but
we also do all the work
setting up the walk
help the walk happen
then
clean up the mess afterward
blue collar stuff

we also help raise funds that will be used
for research caregiver education etc

i am on a state wide committee to promote
alzheimers education
but
i dont enjoy it as much
as the alzheimers committees for the walks
one you just talk a lot and the other
you do the work

without all the volunteers the hundreds involved
in this area the monies wouldnt get raised

so here the stats for our team organicgreendoctor
in the 4 walks we walked in
total team members walked     50
total funds raised     $3200

totals for all the walks
total raised     $350,000
total walkers   2800

so we did our part to contribute to the numbers
feeling good as we walked
as hundreds of others did the same

my kind of people
volunteers them all
doing what it takes
most are personally affected
dont worry if you havent been you will
and
youll feel about these walks like we all do

we all need to find that thing that we want to make
better
be it cancer autism other diseases abuse social issues etc
and
volunteer


the answer is in our hands

the oganicgreen doctor

busy as a bee

BUSY AS A BEE
thats what i am right now
as busy as can be

i am doing a seminar next week
one hour on
the different major dementias
which i have learned a lot from preparing for this talk
then
one hour on
research in alzheimers disease
that one i dont have to do much research on
since i live that one

then in two weeks i will be doing a seminar with a
caregiver whose husband has alzheimers
shess living what she will be talking about
caregiving
ours will be a question and answer seminar after lunch
here is the link to the day long seminar
its filling up fast

then i take a break from doing my presentations
but if asked i will do one
i like the q and a ones where folks ask the questions they
want answers for


then im involved in 3 walk to end alzheimers in central texas
bell county wtea, williamson county wtea, and travis county wtea

i have a team in the first two walks the organicgreendoctor team

advertisement
donate or join at this link

bell county 11/1/14










williamson county 9/27/14

advertisement
look at our online silent auction which closes on september 21, 2014
at
www.32auctions.com/ogd

bid on
-my organic squarefoot garden that i will build and plant for you
-one or both beautiful quilts by my plastic surgeon friend
-$100 gift certificate to the monument cafe group in georgetown
all have been bidded on
500 folks have reviewed it so far
the bidding should pick up as we near the closing date

then my wife she and i walk with austin regional clinics team
in the travis county walk on 10/12/14 since they are one of the
sponsors of that walk

my wife she and i will also be walking in the little rock arkansas
walk to end alzheimers 11/8/14 on my brothers team #joe nash 

all the walks are in honor personally
of my mother father and my younger brother joe
all of whom had this terrible disease

i sit on each of the local committees which have been meeting since
april planning all these walks

so i put a lot of time and effort into the alzheimers associations walks
since they are the major fundraiser for the alzheimers association
they are helping find a treatment and cure for this disease

i also threw down the purple challenge last week which has generated
quite a few donations from around the country and several folks
signing up for their walks locally


the purple challenge can be seen here
basically
-you agree to wear a purple shirt for a day and
post a picture on facebook etc of yourself in said shirt
-donate or join a local walk at www.alz.org/walk
-then personally challenge 3 people to do the same
keep it going please

then i work at williamson county habitat to humanity
once or twice a week doing whatever is needed eg
last week we painted the doors and frames inside the house
and we cleared trash and brush that had accumulated on
the property


advertisement
you can help fund the landscaping i do by going to this link
http://www.gofundme.com/bxgjts
landscaping starts next saturday

more next week on habitat for humanity

then of course every friday am come rain or shine
mostly shine around here
i deliver meals on wheels over a 20 mile route
its a humbling experience sometimes knowing we let
our elderly live like this
sad is what it is

then finally i do my honeydoes househusband chores

so just call me buzz bobby the bee

the organicgreen doctor

its a quiet one

ITS A QUIET ONE

last year our walk to end alzheimers team called the organicgreendoctor
had a silent auction to raise money for the alzheimers association
we had it at a local venue a restaurant with outside seating with music

the auction was successful
we raised close to $1500

the two most popular items were
a organic square foot garden which i built
sited on the winners property
filled it with good organic materials
then planted a fall winter garden for her and her family
she won the bid at the last minute

the other item was an alzheimers quilt that was made by
my friend a retired plastic surgeon who you know must
do a perfect job on the quilt
she did
it was a popular item
and was won by a former patient who made a large bid at
the last minute to win it

since it was so successful as a fun raiser we have decided to
do it again this year
but
this time we will do it online
it will run for 6 weeks starting in the am at 700 am cst
and ending on sunday september 21st at 900 pm cst
if there is a last minute bid the auction will be extended
for 3 minutes to allow for a counter bid
this can go on for 30 min

so the items will be available to more people
over a greater period of time

here is the link to our silent auction

you can review the items now without registering
but to bid you need to register with your name and
email address
your name when bidding can be kept anonymous

i will be personally monitoring the silent auction
and will be the one who makes sure the winners
get their bid items
i have decided to cover any shipping costs involved
inside the continental us
the winners must pay for the item within 3 days or the
item will go to the next bidder
you can pay online

the money raised will be donated under my teams name
to the alzheimers associations williamson county
walk to end alzheimers that will take place on saturday
september 27, 2014

here are the items to be auctioned to start with
more will be added as the auction progresses

an organic 4ft square garden that will be made from
2in x 16 in cedar boards with 1 ft squares marked off
this will be filled with the best orgainc soil that can be
bought in the austin area topped off with the best
organic compost also
the garden will be sited on your property by myself
then using a gift certificate from the natural gardener
i will personally have you and your family plant this
garden
last years winner grew in her fall garden lettuces spinach
beets carrots swiss chard asian greens onions garlic
winter peas cilantro oregano parsley etc
the gift that will give and give for years to come



childs quilt one

childs quilt two

two childrens quilts quilted by my friend the retired
plastic surgeon who has this quilting blog sutured for  living
these quilts were made for a relatives children but
the decision was made later to donate them to raise
money for alzheimers research
she doantes her quilts to a blog that auctions off
quilts for alzheimers disease and this blog has
raised thousands of dollars over the years for the
alzheimers associaton
she has decided to let me have these two beautiful
well quilted quilts for our auction
so
if you have a child or have a child thats planned for in
the future you should take a close look at these quilts
below are the links from her blog that describes them in
more detail
the pictures dont do them justice
i can see them on a grandchilds bed and it be
one that becomes a night night or a keepsake
i have the luxury of having held these in my hands
and admired them
they are good quality quilts verified by several local
quilters
these are two items that will be shipped to you if you
win them
they are being bidded separately

here is her blog entry for quilt one
here is her blog entry for quilt two

the next item if you like food and food choices
is for you
if you live in this area you may know the monument cafe
in georgetown texas
if you dont know about it thats your loss

this item is gift certificates  that can be used at


the wonderful monument cafe
with its home cooked meals and the best
pies ive ever eaten and the best pinto beans ive eaten
this restaurant even if it was in the food capital of texas austin
would still be a popular place
plus

or the monument market
which is like a local farmers market with
produce from local farmers eggs meats olive oils salsas wines
from local growers vegetable plants and its open every day
plus

or the biergarten 
an outside venue with music and food
plus

or the el monumento 
my favorite mexican food place to eat
even when comparing it to all the places in austin
which is saying a lot for the food and its venue
overlooking the san gabriel river

then there is the big organic garden out back of the
monument cafe where a lot of the food they cook
is grown

so this item should be the best bargain of them all
with all its choices

then as the time period progresses we will be adding more
items for the auction

all these items i could easily bid the max on them and be
quite pleased with what i bought

so after 700am cst in the am you may start bidding
its for a good cause
and
the winnings will be worth it for you and for future generations
as we fight to end this terrible disease

here is the link
www.32auctions.com/ogd

please share this link

the organicgreen doctor