alzheimers news.its been seven years since...

ALZHEIMERS NEWS-ITS BEEN SEVEN YEARS SINCE...

ten years ago i applied for long term insurance and got it
after passing a mental status exam
i got all of the questions correct
then
7 years ago i contacted the alzheimers center at ut southwestern in dallas
to be followed annually as i aged so i would know if i developed
memory issues
if i did i had decided that i would stop practicing medicine

i underwent a neuropsychological exam to get into the normal control
group of a large study called the adni 3
being in this study would allow me to be monitored long term
i was also added to a state run study doing the same thing

as a normal control you are what those with memory issues are
compared to

as i sat in that chair in that room answering those questions
many the same as i answered correctly 3 years before
for my long term care insurance
well
i felt like i was in a fog
got real sweaty
as i couldnt answer the questions
i knew then
my time like with my mom and my brother
it was my time

when i got the official report
memory loss greater than you should have for your age and education
you need to see a neurologist they said
i made a neurology appointment in a month
i started my month long slow down of my practice
not letting anyone know except my wife she
well
my nurse and our clinic supervisor sensed it
they knew
my last day she the supervisor said
you arent coming back are you

no
i said to myself
i knew that was it
i had promised myself i wouldnt stay too long
when the time arrived

my last patient i saw in practice was an employees son
who needed a two year check up
i contacted her to bring him in at the end of the day
he was the last patient i ever saw

the next day i got my diagnosis
mild cognitive impairment probably due to alzheimers diseas
i got a new drug
aricept (donepezil) to slow things down
it slows the symptoms but not the disease

i must say i felt devastated
as did most of my coworkers and patients

i couldnt go back
mentally emotionally i coudnt
legally with this diagnosis
medically legally i was now a high high risk physician
i retired my license
that was it

lucky for me
hundreds of patients reached out to me
ive maintained contact with many of my patients via social media
i have got to see the kids grow up
many now having kids
that all helps a lot

i reentered the study having been placed in the
mild cognitive impairment branch of the adni 2 study for 5 years

today i am receiving monthly infusions for another
3 plus years if not longer of aducanumab
which will probably slow down the disease
hopefully until even more new treatments become available


my goal is to see my granddaughter graduate from high school
she is 2 1/2


since my diagnosis
pat summit the tennessee womens basketball coach was diagnosed
with early alzheimers
she died over this 7 year span


my younger brother joe
the mirror i looked into when i saw him
died also from alzheimers disease during this 7 years

7 years ago
i really expected to be further along in this disease
at least where my brother joe was and pat summit was when
they were diagnosed

why am i better or why am i not worse than i was 7 years ago
aricept (donepezil)
healthy living
aggressively controlling my diet weight exercise blood pressure stress
cholesterol
i take a boatload of supplements that may possibly help
i think i was also really early in the disease
earlier than most are when they are diagnosed
having been diagnosed almost by accident

my diagnosis has been confirmed by several neurologists
diagnostic studies like spinal tap analysis and the amvid amyloid scans

so as i sit here typing this blog
i am so thankful to be here today
cognitively here
to be able to enjoy our family
our new life
still doing all the things i was doing before i was diagnosed
and since then

im lucky to be alive
im lucky to be this healthy
physically and mentally

thats my new years resolution
let this all continue
please

fire update
were done
the fire on this side is stopped
folks are being let back in their houses
the air is crisp and clear
thank you thank you thank you firefighters
you are the greatest

have a happy holidays
for those who celebrate
merry christmas

the organicgreen doctor

sum it all up

SUM IT ALL UP

for those of you who did not see the news report on
the alzheimers symposium and the interview with me
here is the link to the video
http://www.kwkt.com/news/alzheimers-symposium-offers-insight-mental-illness


i just finished the book by pat summitt
the university of tennessee hall of fame womens basketball coach
who wrote this book about her career
and her progression to her diagnosis of alzheimers disease

she was open about her life
and open about her diagnosis of alzheimers disease

she even coached her last year while on the alzheimers drugs
aricept and namenda

after reading the book i was able to piece together her process of
getting diagnosed and how she began to notice the early symptoms

comparing my journey to hers

mine
mild cognitive impairment amnestic type
stage 2
hers
early mild alzheimers disease
stage 3

mine
mildly abnormal short term memory tests on the neuropsych exam
hers
more abnormal short term memory tests on her neuropsych exam

mine
positive beta amyloid in spinal fluid and mild elevation of tau protein
hers
not sure of her results
my guess was they were abnormal

mine
normal mri scan of the brain
hers
abnormal mri scan showed some early changes on the initial scan

mine
normal pet scan for glucose metabolism of the brain
hers
abnormal pet scan for glucose metabolism of the brain which
showed some decreased uptake of glucose which means she
has areas of alzheimers disease that has developed

mine
amyvid pet scan of the brain
ive delayed this for awhile
hers
not sure if she has had one

source
her book sum it up

so her diagnosis is a more firm one
she has it and it has progressed some

mine is possible alzheimers disease that time and
more testing in followup will show a trend if it occurs
towards the positive diagnosis

so
pat summitt you are my buddy
wish you well

but man after reading that book
i dont think i could ever play for you as a coach
but
with your record of success you definitely seemed to know
what you were doing

the organicgreen doctor

alzheimers symposium part 2

ALZHEIMERS SYMPOSIUM PART 2
i will present a talk on my story with possible alzheimers
at the alzheimers symposium at the mayborn center in temple texas
on tuesday april 30, 2013

here is the the link to register for the event

part 2
neurology visit

so i went to dallas to the neurology appointment with my wife
they asked that i get the following labs before i came to the appointment

labs to be done
cbc complete blood count
metabolic profile with electrolytes liver function tests kidney function tests
and glucose
vitamin b12 level
syphilis antibody test
hiv antibody test
tsh for thyroid function
urinalysis
mri scan of the brain
depression screen
neuropsychological testing or a good mental status exam
good history and physical

this is the list of lab tests and exams that you need to have done if you
are being evaluated for memory loss or dementia
anything less is not acceptable

a cbc complete blood count checks for anemia or a low white count

a metabolic or chemistry profile checks the electrolytes for a low or high
sodium or potassium which can cause memory loss
abnormal liver tests
abnormal kidney tests the bun and creatinine which is elevated
if you have kidney failure

a glucose which can detect diabetes

a vitamin b12 level
if you have a low b12 level you can have problems with memory

syphilis antibody test
you can have latent syphilis that shows up as later in life in the
central nervous system and cause dementia

hiv antibody test

tsh for thyroid function
thyroid stimulating hormone will detect hypothyroidism or low thryoid
which can cause depression and memory loss

urinalysis to check for blood or protein in the urine

a depression screen
depression can cause memory loss

a mri of the brain
this is looking for increased fluid in the brain shrinkage or atrophy of the brain
brain tumors or masses or cancer old scar tissue evidence of stroke
aneurysms or white matter hyperintensities which can be associated with
an increased incidence of dementia
they are looking for something treatable

a neruopsychological test the gold standard for evaluation or a
good mental status evaluation in the office as  a screening test
the mmse test misses me but a mocha a more involved test picks up
some subtle changes on me that would make a physician want to do more
testing with the gold standard neuropsychological test

then a good history and physical examination looking for something in the
exam that would explain the memory loss

so i saw the neurologist who looked at my neuropsychological test and
my lab tests and mri scan that were done and did a history and exam

she said
dr nash
you have early mild cognitive impairment amnestic type
(short term memory loss) that is earlier than what we usually see
and it may be due to alzheimers disease

here why
you had a normal mental status exam three years ago with your long term
care insurance and now using the same test you have an abnormal result
and other short term memory tests are abnormal

your labs and scans show a normal evaluation for other treatable causes of memory loss

you have a very strong family history of alzheimers disease
mother father brother cousin aunts and uncles grandparents

you put this all together and it says possible alzheimers disease
(later other tests done point towards this diagnosis also)

i think you should consider getting on the medication aricept (donepezil)
i had read enough about my diagnosis and knew thats what i wanted to do

aricept (donepezil)
is an acetycholineterase inhibitor
it raises the acetylcholine levels in the brain and makes the brain and nerve
cells work better

it does not treat slow down or prevent the disease
it only delays the symptoms

one neurologists told me that 1/3 get better on it
1/3 stay the same
1/3 dont get better

so 2/3 of those that start it stay the same for a while or improve
near 100% of those who dont take it dont get better

the earlier you start the aricept (donepezil) the longer it seems to work
it however will get to the point where it doesnt work any more
as the disease just marches on

the side effects of the medicine is related to the elevated acetylcholine
the first month you take as i found out is when the side effects are the worst
they get better however over time

i have had most of the side effects
i get insomnia that is worse if i take it before bedtime
my brother took his however at bedtime and never had any sleep problems
i take it in the morning after breakfast to counter the nausea that occurs
and to help with the insomnia
i also snack some in the morning to keep the nausea at bay

i have the most vivid dreams those aricept dreams
the kind when you wake up you want to go back to sleep so you
finish them
they are never bad ones just pleasant ones

i have restless sleep
i get restless during the morning not long after i take it
which gets better as the day progresses as does the nausea

i get severe leg cramps when i sleep
the kind that get you up out of bed
they are worse if i have done a lot of exercise

i get blurry vision about 2-3 hours after i take it but that goes away
fairly quickly
it was worse the first month but now is better

warning
if you or a family member is on this medicine dont abruptly stop it
without talking to their doctor
eg if i were to discontinue this medicine i might drop down to the level
i would have been without the medicine and if i restart it
i might not ever return back to the same cognitive level i was at

other drugs used in alzheimers are
exelon which works similar to aricept
it also comes in a patch form which helps with the nausea

namenda works differently that the other two
its usually used as an add on medicine when things start getting worse or if
there is problems taking the other two

recent studies have shown that using the aricept and namenda together at
the beginning of the diagnosis may be helpful
eg
pat summitt started on those two meds when she was first diagnosed

so she wrote that prescription for aircept and handed it two me
a surreal moment as i had just 24 hours before written the same prescription
handed it to a patient and his daughter and reviewed those same side effects

i was not accepted in the normal control group of the
alzheimers disease neuroimaging initiative study
but was told after i was on the aricept (donepezil) for 3 months that i
could reenter the study in the early mild cognitive impairment group

i never returned to work
i went on short term disability then later on long term disability

once i was diagnosed i became uninsurable
no life insurance no disability insurance no health insurance no long term
care insurance no malpractice insurance

luckily i had those all in place before the diagnosis was made

so put a lot of thought into getting this evaluation
you need to be ready
soically psychologically and economically ready
if you are not ready it can be devastating

next friday april 19 i will blog on
alzheimers symposium part 3
the alzheimers disease neuroimaging initiative

the organicgreen doctor

pat, wtea, 4/20, coop tour, earth day

PAT

pat summitt has left her job as head coach at the university
of tennessee
she was allowed to stay on this year as head coach after
coming forth with her diagnosis of alzheimers disease
if you watched any of the tennessee womens games you could
see that she was not the same
luckily she has been surrounded for years by great assistant
coaches who carried things this year

she will now be the emeritus coach of the womens team
and will no longer do the coaching of the team

i am on the same meds she is on and know just the side effects
of the medicine on sleep habits and on fatigue can interfere with
your day to day activities
it must have been tiring and stressful for her this year dealing with
everything

hats off to the university of tennessee administration for taking care
of her into the future so she can continue to be a productive person

many dont get that chance
they get fired or are asked to resign
they just stay to long

congratulations to pat summitt on her new job
stay now as long as you can
womens basketball is better having you around

WTEA

its walk to end alzheimers time again
this is the annual major fundraiser for the alzheimers association
so become involved with your local walk and donate or form or join
a team
go to the alzheimers association website to find the team in your area

my team the organicgreendoctor.com team will be in the central texas
chapters walk at georgetown texas on saturday september 29 2012
you may join our team or donate by going to this site

this year my 12 chickens has joined our team and will be laying eggs
to sell for donations to the team
thanks to the country n hens

4/20

i know its the date today
but it has other meanings
just ask willie
or ask your kids theyll know what it means
willie will be at a ceremony today to celebrate his new statue in
down town austin
yep its timed to be at 420 pm today
am sure the smell will not be from bluebonnets

COOP TOUR

if you went on the austins funky chicken tour try this first annual
hill country coop tour
go to the hill country coop tour website to look at the coops and
to get more information

EARTH DAY

we only have one of these
we all need to take care of it or we will all be in trouble
lets celebrate on sunday and make this a better place to live

the organicgreen doctor

pat summitt my buddy revisited

PAT SUMMITT MY BUDDY REVISITED
 

pat summitt is my buddy
after she announced that she had early alzheimers i posted a blog
about her called pat summitt my buddy
and got warm responses from people about that blog
it was sent to her office by several people and i got a nice
response from her pr person

we are buddies because we share the same diagnosis
we are buddies with the rest of those millions in the united states
with this diagnosis

it was hard to watch her this year on the sidelines
i recognize that stare
its the stare my mother my father and my younger brother
had and has
its part of the disease
the disease attacks parts of the brain and one thing that
happens is that facial expression or lack of one

i have a stare or so my wife she says and my sons they say and
the nurses that worked with me say i have
but thats not the stare im stalking about
thats the im pissed off stare

since writing this blog i have made contact with people all over
the united states and several countries who have the diagnosis or their
family member has or had the disease

one thing that happens to people many times is that they stay
in their jobs too long and either get fired or realize they cant
do their jobs any longer and quit
they stay too long

i chose because of my occupation as a physician and because i
was able to find out i had a problem before i made mistakes or
before anyone else noticed to quit as soon as i found out
i could not live with myself if i had stayed and harmed someone

in the adni study and via this blog and because of the two articles written
about me (see the upper right side of this blog)
ive made contact with a lot of
people who are still working because they have to or because they
want to but know that the day is coming when it will all end

there is a lot of people out there like this
many know and many dont know
as we are able to diagnosis people earlier the numbers we do
know about will increase greatly
we as a society will need to figure out what do do with all these
people
many like pat still have a lot of potential left and a lot to give

yes pat its time for you to go and stop coaching
it was obvious watching you
you are now a hindrance to the program it needs to move on

but pat you still have so much you can give to your university
i sure hope that they take advantage of this time you have where
you can still help them before the disease takes the rest of you
away

pat
i watched you for years read books about you and love to watch
the fire you have for your job
thats how ill remember you
we wish you the best
we wish you the best in the fight with this disease
we both know though that it wins eventually
but youll go out as a winnner though

pat summitt my buddy
we all love you

the organicgreen doctor

prevent it?, pat summitt, eclipse

PREVENT IT?
people are always asking cant you prevent alzheimers
disease
before they were told no you cant
youre just screwed if you are going to get it

now it appears there are those things you can do to prevent
alzheimers disease or to slow the progress down or to delay
the onset
sometimes you are genetically programmed to just get it
like i may be with my positive apoe 4 genotype
but maybe it can be slowed down

how do you do it
its what youre doctors have been telling you for years
start now
start early
start young
for these to work well
even if you have alzheimers or mild cognitive impairment these things
can slow it down

exercise regularly
control your blood pressure over your lifetime
control your lipids-triglycerides, good hdl cholesterol, bad ldl cholesterol
maintain a normal weight
control your diabetes throughout your lifetime
eat a normal diet especially a mediterranean diet
get normal restful sleep
avoid excessive alcohol
dont smoke
stay active mentally throughout your life
listen to music or play a musical instrument
stay socialized with friends, churches, groups, family

these also will make you live longer and healthier

PAT SUMMITT




pat summitt my buddy was named sportswomen of the year
you can read some of the article from sports illustrated here

how frustrating this disease must be for her as she continues to work
while taking her meds and doing all of the above things to try to
slow this down

sometimes when i take my aricept in the am i get extreme nausea and
get blurry vision that resolves after awhile
she takes this and also takes namenda so am sure she has some of the
same side effects

ECLIPSE




tomorrow there will be a lunar eclipse visible at about 45% in
the dallas area at 717 am
read here to get more information on it for your area

this is one of those seize the moments that seem to be more important
every day
stop and take a few minutes to enjoy this tomorrow

the organicgreen doctor

wtea t-7, faces, rivalry

WTEA T-7

there 7 days left to the walk to end alzheimers here in austin
our teams are filling up but more are welcome
we could use more donations
even if we stop now it has been successful so far
we hope to build on this for next years team and walk

thanks for the support you have given us

donate to and or join my organicgreendoctor.com team  here
or
donate to and or join your local walk to end alzheimers team at
www.alz.org

next week at t-1 day will let you know about the local walk in
austin

FACES 
it helps to put faces on a disease
to make it more meaningful
here are some faces



pat summitt womens basketball coach at the university of tennessee



glen campbell country western singer



ronald reagan



cactus pryor if you live in the austin area you know who he was
a local radio tv person was very witty
friend of lbj and lady bird



norman rockwall

my mother nell

me

RIVALRY
if you live in oklahoma or texas then
this is rivalry weekend
the big showdown
records and rankings mean nothing
the cotton bowl will be 1/2 burnt orange and
1/2 red
horns vs sooners

young guys vs experience
should be a good game
will be a true test for the horns young players
will be a test to see if sooners are really number one

cant wait

the organicgreen doctor

pat summitt my buddy

PAT SUMMITT MY BUDDY
pat summitt and i have several things in common
we are both from rural areas in the deep south
we are both from poor families
we both have a love for basketball
she just made her living doing it for years

but now we share something we both probably wish
we do not share

alzheimers disease
she was diagnosed with early onset alzheimers disease

watch her video of her announcement on you tube then
read the interview she had
then read my comments

now click on this link and read
this washington post article on pat summitts diagnosis


my comments
when i left my practice i had a difficult time writing a letter to be sent
to all my patients and a letter that was read and given to my fellow
employees and physicians
i could not go there in person to discuss why i left work
even now when i gave my talk to a group about alzheimers i
got teary eyed and had a difficult time talking about it

after watching her video and reading the interview i have a lot of
respect for her in coming forward to discuss this
shes a tough lady and someone who could make this work

her diagnosis appears to be slightly ahead of my diagnosis
the term used for me is mild cognitive impairment amnestic type
hers is called early onset dementia alzheimers disease
there is only a slight difference between the two diagnosis
but not much

she is on medication and most likely that medicine is
aricept (donepezil) as its the medicine used initially when
the diagnosis is made
its the same medicine ive been on for 8 months

she saw dr ronald petersen a well known alzheimers expert at the
mayo clinic alzheimers research center who is one of the
investigators of the study (adni-2) that im enrolled in

she had a spinal tap and may have had spinal analysis for
tau protein and beta amyloid like i had done but hers would
probably be more positive than mine was

she had a neuropsychological exam (the sucky test) that
probably really showed where her deficits were
its a difficult and frustrating test to take if you have a
problem
am sure she was not a fun person to give it too
its a humbling test to have to take if you have a problem
ive been humbled 5 times this year and its the only part
of my evaluation and treatment that i dread

she is using medications and reading and memory games to
help
continuing to work may be one of the best things for her
to do as her job requires a lot of mental exercising to do it well
i think she can do it

she also should control her blood pressure, control her cholesterol,
get regular exercise 5 days a week, take aspirin every day, eat
a low fat mediterranean diet, get appropriate sleep, avoid excessive
stress (not a good job for that), and consider taking supplements
of omega 3 fish oil, folic acid, vitamin d and calcium

but remember the disease just marches on anyway but all this
may slow the symptoms some

if she was a physician like me she would not be able to work
because a lapse of memory could cause serious harm to someone
other occupations that should not work with this diagnosis would be
nurses, truck drivers, bus drivers, air traffic controllers, pilots,
presidents (although reagan im sure was in the early  stages during
his late presidency), or policemen (that was what my close relative
was doing when he was diagnosed)

however occupations such as coaches like pat summitt,  teachers,
professors, clerks, some supervisors, congressmen, construction
workers, landscapers, researchers, news reporters, or
salespersons could probably continue to work with this
early diagnosis

so its good that she plans to stick with it with her job and put a face
on this disease that will make people understand it better

hopefully she will do the walk to end alzheimers in knoxville
tennessee on september 18, 2011

good luck my friend
wish you the best this year
you are a tough lady

the organicgreen doctor