my story revisited 28-my final answer part one and part three

MY STORY REVISITED 28-MY FINAL ANSWER PART ONE AND PART THREE

on monday i saw the neurologist for my annual neurology visit
i did the moca memory test that i have done that shows where i am with my memory
again my memory is still in the normal range
normal for this exam is 27-30
i have been in the normal range now for the last few years
i didnt start out that way in 2010
my score was lower around 24 or 25 which is scored as mci or mild cognitive impairment
over several months that score dropped as i was going the wrong way
then
it started after a couple of years to climb back up in the normal range
why
if you read below i list the healthy things i do which is being shown in research over the last 10 years to slow down symptoms in some people and in the general population to decrease the incidence of alzheimers disease
no
its not some magic bullet or some new drug
its just healthy living stuff that we all should be doing

plus
i got 7 months of the biogen drug aducanumab which means i got enough to remove  a good portion of the amyloid that had accumulated in my brain but my memory was near normal when i started the study
i also got on aricept (donepezil) as soon as i got diagnosed
this has probably despite the side effects the worse being interfering with sleep to be one of the reasons my symptoms are slowed down
i also got on dr bredesens reversal of cognitive decline protocol after clearing it with my pcp and my neurologist
i started all these things real early in the disease which makes me an advocate for early diagnosis

i wrote below about not being 100% sure of the diagnosis until you die and they autopsy the brain
well
today we can come close to that diagnosis with that degree of accuracy with all the diagnostic testing that i have had

if you read my blog my story revisited -my final answer part two linked here it details my neurology visits and my diagnostic workup

so
my story and how i got there is in these three blogs
my final answer part one
my final answer part two
my final answer part three

what to do and how to do it is in there

it is the road map on what one needs to do to be aggressive in fighting this disease


XXXX
07-15-2011

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 amnesic 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 disability 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 underwent 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 dealt 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 associate who told
me oh know everyone says that
i knew i had a problem

on the trip home i discussed 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


07/29/2011

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 amnesic 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 alzheimers disease of intermediate probability
if i could see my pet scans and if they were positive the diagnosis
would be changed to due to alzheimers 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

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

XXXX

also i would like to add yes im bragging some here
my memory tests are better than many of you who read this blog
why
its all what im doing to slow this down
but
as i always say when i do my talks and presentations
i am under no illusions here of a cure
since
i know this disease will win in the end
i just am enjoying this reprieve

the organicgreen doctor