welcome to the organic green doctor blog

i am a family physician who was diagnosed with
early mild cognitive impairment(mci) amnestic type on december 21, 2010
this is a precursor to alzheimers disease
because of this diagnosis i have opted to stop practicing medicine
this blog will be about my journey with this disease
please feel free to follow me along this path
i will continue blogging on organic gardening, green living,
solar power, rainwater collection, and healthy living
i will blog on these plus other things noted to be interesting

Showing posts with label my story. Show all posts
Showing posts with label my story. Show all posts

Monday, August 8, 2011

happy anniversary, thanks congress, fb, mri

HAPPY ANNIVERSARY
today is the first anniversary of this blog
it was started one saturday afternoon after my wife she
watched a show on public tv about a women who started
blogging about her life as she was going through a bad time
in her life
her blog caught on and she has now over a million followers

i told my wife she that i had always wanted to do that
so i did my first blog that day
i originally wanted to do it on organic living, green living, medical
topics, life as a family doctor, and other things

little did i know things would change in a few months when i
added alzheimers disease to the list and did less on life as a
family doctor

i have had almost 50000 viewings of my blog in the first year
my most popular blogs have been about my story from last winter
and my most recent posting on the three part blog of my story
final answer

80% of my viewers are from the usa with 20% from foreign
countries with russia, england, germany, and japan as the most
visited from nations

thanks to you the readers of this blog for taking time to read it
at times i find this blog therapeutic to write and always enjoyable to
write

i hope to make you smile each day but also to educate you on
things in this blog

thanks again

THANKS CONGRESS
i also would like to thank congress for getting us into this big
mess that we are in now
we have been downgraded to aa from aaa by s & p
guess our fica scores dropped down also

from fb posting i found this entry if pro and con are opposites
then the opposite of progress is congress

this says it all

whats scary is that we are in much better shape than most
countries and that other countries are buying our bonds even
though they are barely paid any interest because they feel that
their money is safer here in the us than other countries

if they dont do something about this mess i plan to vote against
all incumbents in the next election-thatll show them huh

FB
am so ready for football
went to the cowboy camp on saturday
they didnt look very good
hope things get better
it was nice and cool in the alamodome though

exhibition games start this week
cant wait

MRI
have an mri of the brain today as part of the adni study
during the 5 years of this study i will have 4 of these done

this mri especially looks at the volume of the hippocampus
the hippocampus is on the undersurface of the brain and is
where short term memory occurs
changes in its size occurs in early alzheimers

the organicgreen doctor






Friday, July 29, 2011

my story-final answer part three

MY STORY-FINAL ANSWER PART THREE
well do i have alzheimers disease or dont i

remember you can only be definitely diagnosed at brain autopsy
the best that can be done before then is the diagnosis of
probable alzheimers disease

so my diagnosis is early mild cognitive impairment amnestic type
felt to be from probable alzheimers disease

this is based on
medical history of short term memory problems recognized by me
and documented on serial neuropsychological exams
a family history of alzheimers disease
other causes ruled out for memory loss
a positive apoe4/apoe4 gene for alzheimers (50-90% chance)
a low beta amyloid level in spinal fluid

research criteria would classify me as mild cognitive impairment
due to alzhiemers disease of intermediate probability
if i could see my pet scans and if they were positive the diagnosis
would be changed to due to alzhiemers disease of high probability

the new classifications for alzheimers disease are
preclinical-no symptoms
mild cognitive impairment-minimal to mild (thats me)
alzheimers disease-symptoms

these are the new classifications that are used in research only
studies are hoping to classify people earlier than before so
research can be done on these people
so far most research is on full blown alzheimers disease when
it may be too late to do anything

remember medications such as the aricept (donepezil) i am on
only controls symptoms but does nothing to control the disease

the goal is to find someone with no symptoms or minimal
symptoms and get them on a medicine or treatment that will
prevent this disease
thats where all the research is headed

now drugs are being tested and developed to do just that

eg when cholesterol was discovered to be related to arterial
disease drugs such as the statins were developed to treat people
with high cholesterol to prevent arterial disease ie heart attacks
years later

so is the goal for alzheimers research
these tests will be used to identify people early so they can
be started on medication to slow things down or prevent the
disease or to intensify preventative measures as below

when you are diagnosed with it now its too late to treat

on the alzheimers associatioin web site
http://www.alz.org/alzheimers_disease_stages_of_alzheimers.asp
there are the 7 stages of alzhiemers thats used to get a feel
for where a person is with the disease eg my mother was
in stages 6-7 and my close relative is in stages 4-5
i am in stage 2 of the disease
the stages can go fast or go slow

to get diagnosed you need a
medical history taken
mini mental state exam (mmse) as a screen test-i passed this part
blood work, mri or ct scan to rule out other causes of symptoms
if all are normal and there is still concern then consider a more
involved neuropsychological exam by a psychologist

i chose to get  involved with research and
got a fdg-pet scan of the brain for glucose metabolism and
a beta amyloid pet scan of the brain
got spinal fluid analysis for beta amyloid and tau protein
got genetic testing and
am getting serial neuropsyhological exams

some of these are biomarkers that you will hearing a lot about
in the future and will be used to solidify the diagnosis better while
a person is alive
(100% diagnosis can only made at brain autopsy)
their use is not well defined by medicine yet but will be in the future

what can you do not to get alzheimers disease
in the future medications will be available

there is some evidence that doing those things that are preached to
us when we go to the doctor may make a difference in delaying or
some think may help prevent alzheimers disease

exercise-minimal 30 minutes of walking 5 days a week
diet-mediterannean diet of fish, fruits, nuts, vegetables, low fat diet, olive oil
controlling cholesterol levels
controlling blood pressure
controlling diabetes
maintaining a normal weight
good sleep habits
controlling stress
staying active mentally
socializing
treating depression
avoid drug and alcohol abuse
dont smoke

how is this affecting me

mentally
i have worried for years that i would get alzheimers disease
because of my strong family history
so ive handled this better because of this worry and because of my
knowledge as a physician and because of my involvement with a
research study and because i keep up closely with whats going on
with alzheimers disease
i have been screened several times for depression and i dont feel
depressed

financially
i have made a good income as a physician
my wife she and i have always lived conservatively  and have
saved well for retirement and also have been able to help out
family members at times
we have little debt now
although i had to retire a few  years before i wanted to we are doing
ok financially

i have a disability policy from my work that is suppose to pay if
i am not able to do my specific occupation as a family physician
this was suppose to start paying in april of this year but so far
they are dragging their feet paying off on my disability claim
i have to go to a neuropsychologist next month for an evaluation
(i have had 4 of these in the last 8 months)

family
its good my wife and i know as we are able to plan our lives now
we know whats coming we just dont know when
we are in the process of updating our will, our power of attorney,
our health care power of attorney, and our living wills
we i think enjoy each other more now
with more urgency i feel the need to make and continue contact
with family and friends and
with more urgency i feel the need to see some of those things i
have not seen or done ie my bucket list

my sons know where i am with all this and we plan to keep them
updated over time

my family members and friends know whats going on as most read
this blog daily
i have been and plan to continue to be open with what ever goes
on in my life with this disease as long as i can

i plan on trying to reach and educate as many people as possible
about this disease

remember
100 % of you will be affected by this disease in some way
it may break our health care system
in the group i worked with they have 250,000 patients
statistically the group should have  3000 patient with this disease

you cant avoid this disease its here for all of us to deal with

make a contribution to fighting this disease and give your
support through my walk to end alzhiemers team
organicgreendoctor.com or support your local walk to end
alzheimers at www.alz.org

coming up for me is my 2nd mri of the research study in 1 week
followed by the 6 month followup visit with the neurologist
an 8 hour neuropsychological exam and
the involvement with another research project making a video
with me as the patient for use by primary care doctors
demonstrating an in office mental neurological evaluation
i will be involved as the patient and also as my experience as
a family doctor

the organicgreen doctor

Friday, July 22, 2011

my story-final answer part two

MY STORY-FINAL ANSWER PART TWO
this is the part two of a three part blog on my story-final answer
this blog today will deal with the neurology visits, the medication
i am on, the research study im in, and the diagnostic tests that
have been done

next week the blog will be on what it all means for me and maybe
for you and your family

neurology visit
i met with the neurologist on december 21 2010
she interviewed me and my wife she
she also did a neurological exam on me
she reviewed the neuropsychological exam i had done-the one
where i did poorly on the short term memory portion

because i had a normal neuropsychological exam 2 years ago
followed by a abnormal neuropsychological exam 2 years later
because i had noticed problems with my memory over the last
few months and
because of my strong family history of alzhiemers disease in my
family-mother, father, a close younger relative and probably
numerous aunts and uncles
she felt and i agreed with her that i had early mild cognitive
impairment amnestic type probably from alzheimers disease
(remember alzheimers disease is only 100% diagnosed at autopsy)

she felt and i agreed with her that i should start on a medication
called aricept (donepezil)
i knew that medicine well
i had just written it for a patient of mine the day before as he
has mild alzheimers disease
my mother was on the same medicine and my close relative is
presently on it

so why do i need to be on this medicine
if what i have is due to alzheimers disease then it will progress
rapidly or may progress slowly but it will eventually progress to
the same awful end point

the medication aricept (donepezil) doesnt stop the disease process-
that deposition of amyloid in the brain and the unraveling of the tau
proteins in the nerve cell that may be the cause or end result of
alzhiemers-
it just marches on no matter what

the aricept (donepezil) inhibits acetylcholine esterase an enzyme
that breaks down acetycholine in the nerve cells
by inhibiting this enzyme the levels of aceylcholine stays elevated in
the nerve cells so what nerve cells remain work better

by taking the aircept (donepezil) the aceylcholine levels are kept
high and the brain works better
if you stop the aricept (donepezil) the acetylcholine levels drop and
the brain doesnt function as well
the bad thing is when you restart the aricept (donepezil) you dont
regain back to where you were

so it was decided that i take the medicine to maintain my status
where it was now rather than wait to see if my memory got worse
then start the medicine ie i would have lost ground that i could
never regain

so i have been on the medicine now for 7 months
the side effects are tolerable
it causes vivid dreams more than ive had in the past
it causes a figgidness especially in the morning time after i take it
i have to go outside and work or take a long walk
it also causes a restless leg like symptoms especially at night
it also interferes with sleep
both of these symptoms are relieved somewhat by taking a
childs dose of benadryl
i have not had any of the gastrointestinal symptoms that some
people have

so i have stayed on this medicine now and will stay on it until
it doesnt work anymore
at that time usually another medicine is added to the
aricept (donepezil)
when that will be i dont know
it could be in 1-3 years or 5 years or 10 years or never

i then underwent testing to rule out other treatable causes of
my memory loss
i had a complete blood count to rule out anemia, infection, leukemia,
a complete metabolic panel to rule out diabetes, electrolyte
problems, kidney disease, liver disease, a tsh level to rule
out hypothyroidism, a b12 level, a hiv test, a syphyllis test, hepatitis
screening, a urinalysis, and a sed rate to rule out inflammation--
all of these were normal

i had an ulrasound of the carotids to rule out blockage to the arteries
in the neck--this was normal

i also had a mri with and without contrast to rule out aneurysm,
tumors, strokes, circulatory problems, brain shrinkage, and
increased fluid in the brain--the mri was nomal

i was also screened for depression several times and i dont feel
depressed and the screens were negative for depression

after a few months on the aricept (donepezil) i did a followup
visit with the neurologist
i will see her every 6 months and will remain on the medication

i also was now able to enter the adni-2 (alzheimers disease
neuroimaging intitiative) study at the university of texas medical
school memory clinic since i was stable on the medication

this study is important as it may define how a person is
evaluated for alzheimers disease in the future with these tests
that i am having done

this time i was entered not in the normal control group but in the
early mild cognitive impairment group
the other groups are normal, late mild cognitive impairment
and alzheimers disease (aint there yet)

during the initial visit i had another neuropsychological exam,
a screen for depression, the same labs as above, and an
mri of the brain-the short term memory problems were still
present and the labs and mri were normal

i then had blood drawn for genetic tests and other dna and
rna tests-one of these genetic tests is for the apoe 4 genotype
which is known as the alzheimers gene
i underwent a spinal tap for amyloid protein (beta amyloid protein)
and tau protein-more about them later
i had a fdg (flurodeoxyglucose) pet scan which measures glucose
metabolism in the brain
in alzheimers disease the glucose metabolism slows and the fdg
pet scan shows early on in mild cognitive impairment a decreased
uptake in or near the hipppocampus on the undersurface of the
brain where memory occurs


above is a fdg scan that shows decreased uptake (the red color)
in mild cognitive impairment  and in alzheimers disease

i also had a florbetapir f 18 pet scan which measures amyloid in the
brain-this is a research pet scan not available outside of research-
in mild cognitive there is an increase uptake in the hippocampus area

as the disease progresses (as more amyloid gets deposited) the
scan turns positive diffusely across the brain


this is a scan similar to the amyloid scan mentioned above
you can see the increased red amyloid deposition in alzheimers
disease vs a normal control scan

i will never see the reports of the labs, mris or the pet scan reports
as they are protected by the research study
that is part of the deal

i will have the pet scans and lumbar puncture every 2 years
i will have the mri at 3 mo 6 mo 12 mo 24 mo 36 mo 48 mo
i will also do neuropsychological tests, depression tests, and
blood work at each visit

i elected to have the apoe genotyping through my primary care
provider as i wanted to know the results
i felt like i was well versed on alzhiemers disease and understood
what the apoe tests mean and what limitations it has

the apoe gene is called the alzheimers gene although it is one of
several that may be associated with alzheimers
the apoe gene can be 2, 3, or 4
apoe 2 may be protective for alzheimers
apoe 3 may have milder degrees of alzheimers
apoe 4 i call it the sucky gene

a genotype of  a single apoe 4 gene (heterozygous for you
science folks) carries a risk of 10-50 % chance of developing
azheimers disease
a genotype of double apoe 4 gene/apoe 4 gene (homozygous)
carries a risk of 50-90 % chance of developing alzheimers disease

well i got screwed it looks like
i have the apoe 4/apoe 4 homozygous gene
ie i got it from each of my parents

i also opted to obtain spinal fluid for analysis of biomarkers for
alzheimers disease through my primary care provider
one of them is the beta amyloid protein
in alzheimers disease as the amyloid gets deposited in the brain
the amyloid levels go down in the spinal fluid

well i got screwed again as my beta amyloid protein is low in my
spinal fluid

the other test on the spinal fluid is the tau protein
its a protein thats found in the brain thats involved in the nerve cells
as this protein gets unraveled it gets phoshorylated and the p-tau
levels in the spinal fluids go up
well my levels were in the borderline level for alzheimers disease

here is a graph of my results
the left side of this graph  is the beta amyloid level
the level is low
the horizontal side is the ptau level
the level is borderline

so i have a normal neuropsychological exam 2 years ago followed
by abnormal neuropsyhological exams showing short term memory
problems,
noticeable memory problems to me,
a strong family history of alzheimers,
a positive apoe 4/apoe 4 genotype,
a low beta amyloid in the spinal fluid and
a borderline level of p tau protein in the spinal fluid

all of these point to azheimers disease as the cause of my mild
cognitive impairment

if i could see the reports of the fdg pet scan and the amyloid pet
scan i would have an even more accurate picture of where i stand

next week in part three i will try to put all of this together and what
it means to me, my family and possibly to you

please support my team-organicgreendoctor.com-by donating to
it at my donor site or support your local walk to end alzheimers
at www.alz.org/walk/

the organicgreen doctor

Friday, July 15, 2011

my story-final answer

MY STORY-FINAL ANSWER
i have the unique opportunity of telling my story as a physician who
has treated alzheimers patients, as a family member who dealt with
close relatives with the disease and now as a patient who may have
been diagnosed early enough that i can give unique observations
on this terrible disease

so its been a long 8 months since i was diagnosed with early mild
cognitive impairment amnestic type thought to be from alzheimers

alzheimers is a diagnosis that can only be 100% made by brain
autopsy when a person dies
i hope to reach as close as possible to 100% while i am alive with
what is available in modern medicine although some of the tests
are only available in research studies

i had to quit practicing medicine which was what i loved to do
i enjoyed going to work every day
i had just got real good at what i do

i will do a three part series every friday for the next three fridays
on my story

today will be on the history of what happened to me
next friday will be all the test results and how they are used
then the third friday will be what all this means for me and for
you

here goes
two years ago i applied for long term care insurance because of my
family history of alzheimers
my mom had severe alzheimers and died from complications of the
disease
she had an infected toe that she and no one else noticed
from that she got gangrene of the leg and died after that
my dad was spared the merciless trip of alzheimers by dying from
a heart attack
looking back he had mild to moderate alzheimers but never was
officially diagnosed (i know this because of a genetic test i had)
a close relative of mine has moderate alzheimers now
he is a year younger than i am
his disease is what worries me the most as i feel like i may be
following down the path he is taking

for the long term care insurance i had to undergo a 30 minute
neuropychological exam by an examing nurse and had no problem
with any of the questions
i eventually got the long term care insurance and plan to maintain it
during my lifetime
if i had waited until all this had happened i would not have been able
to get the long term care insurance today
(nor could i get new health insurance, life insurance, medical
malpractice, or a disabiltiy policy ie im uninsurable)

a year later because of the family history of alzheimers i wanted to
enter an alzheimers research study or see a neurologist to follow
me on a regular basis

i had started to notice problems at this time although they were
quite subtle and not noticeable to patients, family members,
fellow workers or fellow doctors

i had started to have problems with doing prescriptions especially
when having to calculate doses and if the patients prescriptions
got complicated
i compensated by using caution, triple checking everything and
being backed up by the computer, a good nurse and by the pharmacy
i had started to have problems remembering the interactions of
medications but this again was helped with our computer system
and by using standard forms for office visits

i also started to have some problems remembering seeing patients
when they would return for followup visits
i know you cant remember seeing every patient and remember
everything about a visit but
i had several times when i saw patients for illnesses that i should
have remembered but absolutely did not recall seeing them
i found this surreal and very disturbing

but at no time did i put my patients at jeopardy
i became very cautious and did a good job of documenting the visit
when i saw patients

i also had to take a continuing medical education course for my
malpractice insurance to get a 15% discount on my premiums
when i read the material and then took the test i only made a 30%
on the test
i was given credit for taking the test but again i was very disturbed
by my failure to retain the material

this was about the same time i went to see the memory clinic at the
university of texas southwestern medical school in dallas
after talking to the research associate the plan was i would enter a
alzheimers research as a normal control subject

i discussed with the research associate what i was wanting to do
was to be in the alzheimers research study so i could be monitored

if i had or developed a problem i would know
if that happened i would quit practicing medicine for fear of
causing harm to my patients

my wife she and i went to the clinic
we met with the research associate who interviewed  us in
separate rooms-i answered some questions better than my wife
she did
i then under went a complete neurological exam by one of the
staff neurologists
he also interviewed my wife she when i went in for my neuro-
psychological exam

on the 3 hour neuropsychological exam
i did ok on most of the material
however the parts that delt with short term memory was a problem
for me
i knew for sure when i took that exam that i had a problem
this was quite disturbing to me

after the test i discussed it with the research assoicate who told
me oh know everyone says that
i knew i had a problem

on the trip home i discusssed all this with my wife she

that week i dumbed down my practice, slowed down my practice,
referred out any complicated patients, tried to get out of doing
urgent care, and scheduled more time off

a few weeks later i got a call from the research associate who told
me i was turned down for the study because i failed the short term
memory portion of the neuropsychological exam
it was recommended i see a neurologist for an evaluation

next week ill do part two which will be on the neurology visits,
all the test results, and the research study then
in part three i will try to put it all together as to what it means
to me and my wife she and my family and what it may mean
to you in regards to alzheimers disease

please support my team-organicgreendoctor.com-for the
austin walk to end alzheimers at my team page
or support a local walk in your area at www.alz.org/walk/

we need your support to help end this disease

the organicgreen doctor