ADNI 2
adni 2 stands for
alzheimers disease neuroimaging inititative phase 2
its a mulicenter study on alzheimers
mainly funded by the stimulus package from 3-4 years ago
its the 2nd phase of this study
it will last for 5 years but if funding is present will be continued
it is considered the most important study on alzheimers that
has ever been done
important research information is being written on results of
this study almost on a weekly basis
in this study there are 4 categories of study subjects
-normal controls-i tried to enter as a normal subject but it
was found i had some short term memory deficits so i was
placed in the next category
-early mild cognitive impairment-these subjects are real early
in the process
many like me have very subtle symptoms not
noticed by others
many are still working their jobs
none are pilots or doctors or air traffic controllers who are still
working though
although real early many of us are already on aricept (donepezil)
which can slow the symptoms of alzheimers but will not stop the
progress of the disease
some times starting the meds now at this stage will delay the onset
of the disease sometimes as much as 5 years
-mild cognitive impairment-these subjects have less subtle findings
some which are obvious to friends and relatives
-alzheimers disease-these patients have all the signs and symptoms
of alzheimers
if the new medicine crenezumab thats being tried on the large family who
carry the early onset alzheimers gene in columbia works then that medicine
could be started
one day on normal subjects who will get the disease or
those of us in the early mild cognitive impairment group
the disease would be stopped or slowed down significantly
we are a few years away though from knowing if that will work
sadly for me since i carry the apoe 4 genotype double gene
these meds may not work as well on me
today the tests i will have are
a general interview with my wife by the research coordinator to make sure
i am not having any new problems
a large number of vials of blood sent for muliple screening labs like
thyroid liver function test cbc etc and tests for proteins in the blood
that have been associated with alzheimers disease
eventually these blood tests will be available to everyone so that you
can be screened to see if you have a chance of getting alzheimers
it may be 90+% accurate
then next i have the test i dread the most the
2+ hour neuropsychological exam
the torture test
its frustrating because i know that i will have problems with parts of the
tests and cant do anything about it
then i have a mri of the brain
its looking for brain shrinkage and for subtle changes in the size of
the hippocampal area of the brain-the area where all this crap
starts
then i get a one year reprieve and go to annual visits
next year i will have all these tests done plus a spinal test for
amyloid and tau protein a fdg glucose metabolism pet scan and
a amyloid pet scan (thats like the new amyvid test thats now available)
is it worth doing this
yes it is even though i dont ever get the results
this research study the adni 2 study may help me one day but
will definitely help my kids or your kids or our grandkids
so
its worth it
the organicgreen doctor
Showing posts with label fdg pet scan. Show all posts
Showing posts with label fdg pet scan. Show all posts
Thursday, May 17, 2012
Friday, May 11, 2012
mothers day, post abbie, ad classifications
MOTHERS DAY
on sunday i will pause and think about the two mothers
that have been important in my life
this is my mother
she would be 90 years old
she raised 8 children
the wife of a baptist minister
she was loved by all of her kids and all that knew her
she was a nurse and loved her profession
she was devastated by alzheimers disease in the last stages
of her life but
we remember her today during the best times
the other person
is my wife she
shes a good mother and a good wife and
a good sport for allowing me to pick on her
in this blog
shes a special person
will be thinking of her on mothers day
love you
POST ABBIE
what response to the blog on abbie
it is a special story
pass it on to those who would benefit from reading it
when you think you cant do something in life just think of abbie
you can do it
she did and does
AD CLASSIFICATIONS
there are three new levels in the new diagnostic classification
for alzheimers disease
pre clinical azheimers disease-you and no one else notices anything
mild cognitive impairment due to alzheimers disease-you and others notice changes
dementia due to alzheimers disease-those changes are more obvious
the preclinical phase can last for several years before symptoms start
the mild cognitive impairment starts subtly then advances to more
obvious symptoms after the process has been smouldering in your brain
for all those years
dementia due to alzheimers disease occurs when those processes start
damaging the brain and start snowballing in their effects
its the downhill roll that occurs with alzheimers disease
preclinical
the red line the 1st line
beta amyloid starts to form and accumulates in the brain
if my younger brother had tests in his mid to late forties on his spinal
fluid
they would have found decreased levels of beta amyloid
and on a beta amyloid pet scan they may have found some accumulation of
beta amyloid in his brain
my beta amyloid in the spinal fluid is reduced
i dont know my results of the research beta amyloid pet scan but plan
eventually to have the amyvid pet scan for beta amyloid
the orangey line the 2nd line
the synapses those nerve connections in the brain start to get damaged
if you measure glucose metabolism in the brain at this stage you may start
to see some loss of glucose uptake on a fdg glucose metabolism pet scan
at the beginning of this he would still be working without noticing anything
and
later as it progresses up the red and orangey line he will began to notice
some subtle things that others wont notice
this is where i enter the picture with the very early noticing of things
my fdg metalbolism test is normal
the green line the 3rd line
the damage is done to the nerve cell
things unravel in the cell and release a substance called tau
which can be measured in the spinal fluid
as the green line progresses upwards the symptoms he notices become
more obvious to him but probably not to others
the beta amyloid would be increasing in his brain and decreasing in the
spinal fluid
his tau protein levels would be increasing in the spinal fluid
he was in the middle of his second career as a policeman
i entered above and this is where i am now
my tau protein is increased and is in the borderline range
mci
the blue line the 4th line
the damage is occurring and on a mri there starts with subtle
changes in volume in the brain in the area of the hippocampus
that controls short term memory
at this stage the symptoms are becoming obvious to my brother and to
those around him
he actually sought medical help but was mostly ignored
i am not at this stage yet but am just where the purple line the 5th line
is beginning
the purple line the 5th line
this is where things start to take off
cognition begins to show up as worsening
the black line the 6th line
this is clinical functioning
this is how well your are functioning in the real world
as this line takes off and crosses the 2nd dotted line is where my
younger brother was officially diagnosed
short term memory was a problem
getting lost driving was a problem
at this point spinal fluid would show high tau protein and
low beta amyloid
fdg glucose metabolism pet scan would show progession of the decreased
uptake of glucose by the brain
a beta amyloid pet scan (like the amyvid) would show more involvement
of the brain with the beta amyloid plaques
a mri would show some brain shrinkage and changes in the hippocampus
he would have to quit working at this point
their life just changed significantly
after this point the lines all continue to increase and things just
get worse
where exactly am i
im at the first dotted line and if i follow my younger brothers path
i am 5-10 years behind him
hope its the later number
get tested if you have symptoms
the oganicgreen doctor
on sunday i will pause and think about the two mothers
that have been important in my life
this is my mother
she would be 90 years old
she raised 8 children
the wife of a baptist minister
she was loved by all of her kids and all that knew her
she was a nurse and loved her profession
she was devastated by alzheimers disease in the last stages
of her life but
we remember her today during the best times
the other person
is my wife she
shes a good mother and a good wife and
a good sport for allowing me to pick on her
in this blog
shes a special person
will be thinking of her on mothers day
love you
POST ABBIE
what response to the blog on abbie
it is a special story
pass it on to those who would benefit from reading it
when you think you cant do something in life just think of abbie
you can do it
she did and does
AD CLASSIFICATIONS
there are three new levels in the new diagnostic classification
for alzheimers disease
pre clinical azheimers disease-you and no one else notices anything
mild cognitive impairment due to alzheimers disease-you and others notice changes
dementia due to alzheimers disease-those changes are more obvious
the preclinical phase can last for several years before symptoms start
the mild cognitive impairment starts subtly then advances to more
obvious symptoms after the process has been smouldering in your brain
for all those years
dementia due to alzheimers disease occurs when those processes start
damaging the brain and start snowballing in their effects
its the downhill roll that occurs with alzheimers disease
preclinical
the red line the 1st line
beta amyloid starts to form and accumulates in the brain
if my younger brother had tests in his mid to late forties on his spinal
fluid
they would have found decreased levels of beta amyloid
and on a beta amyloid pet scan they may have found some accumulation of
beta amyloid in his brain
my beta amyloid in the spinal fluid is reduced
i dont know my results of the research beta amyloid pet scan but plan
eventually to have the amyvid pet scan for beta amyloid
the orangey line the 2nd line
the synapses those nerve connections in the brain start to get damaged
if you measure glucose metabolism in the brain at this stage you may start
to see some loss of glucose uptake on a fdg glucose metabolism pet scan
at the beginning of this he would still be working without noticing anything
and
later as it progresses up the red and orangey line he will began to notice
some subtle things that others wont notice
this is where i enter the picture with the very early noticing of things
my fdg metalbolism test is normal
the green line the 3rd line
the damage is done to the nerve cell
things unravel in the cell and release a substance called tau
which can be measured in the spinal fluid
as the green line progresses upwards the symptoms he notices become
more obvious to him but probably not to others
the beta amyloid would be increasing in his brain and decreasing in the
spinal fluid
his tau protein levels would be increasing in the spinal fluid
he was in the middle of his second career as a policeman
i entered above and this is where i am now
my tau protein is increased and is in the borderline range
mci
the blue line the 4th line
the damage is occurring and on a mri there starts with subtle
changes in volume in the brain in the area of the hippocampus
that controls short term memory
at this stage the symptoms are becoming obvious to my brother and to
those around him
he actually sought medical help but was mostly ignored
i am not at this stage yet but am just where the purple line the 5th line
is beginning
the purple line the 5th line
this is where things start to take off
cognition begins to show up as worsening
the black line the 6th line
this is clinical functioning
this is how well your are functioning in the real world
as this line takes off and crosses the 2nd dotted line is where my
younger brother was officially diagnosed
short term memory was a problem
getting lost driving was a problem
at this point spinal fluid would show high tau protein and
low beta amyloid
fdg glucose metabolism pet scan would show progession of the decreased
uptake of glucose by the brain
a beta amyloid pet scan (like the amyvid) would show more involvement
of the brain with the beta amyloid plaques
a mri would show some brain shrinkage and changes in the hippocampus
he would have to quit working at this point
their life just changed significantly
after this point the lines all continue to increase and things just
get worse
where exactly am i
im at the first dotted line and if i follow my younger brothers path
i am 5-10 years behind him
hope its the later number
get tested if you have symptoms
the oganicgreen doctor
Friday, January 27, 2012
scans, post video, post visit, workup
SCANS
tried to post a beta amyloid pet scan of a patient with
mild cognitive impairment yesterday on facebook
that would not post so im posting it here
the red stuff is not suppose to be there
this is actually from a patient with alzheimers disease
but a patient with mild cognitive impairment who has
advanced some will look similar to this
that red stuff is beta amyloid
thats what is thought to be the cause or the end result
of whatever is causing alzheimers disease
if we can stop this deposition of the beta amyloid in the
brain or remove it early with meds or a vaccine then we
will be getting somewhere in the prevention and cure and
treatment of the big A
this is a glucose metabolism pet scan
the red stuff in this scan is suppose to be there
its radioactively labelled glucose
the more the merrier
in mild cognitive impairment its reduced
and in the big A its even reduced more
the brain cells that are damaged cant metabolize
glucose well so they start dying
the other scan that is done is the volumetric mri
on the right is a normal beta amyloid with a normal
volumetric mri (vmri)
on the left is the abnormal beta amyloid with the red stuff
and just below this is an abnormal volumetric mri
with increase size to the ventricles in the middle that looks
like a bird in flight and the decrease in the hippocampal area
on the under surface of the brain
-the hallmarks of early alzheimers disease or mild cognitive impairment
these then are the three scans that i am aware of that are used
in working up alzheirmers disease or cognitive problems
the beta amyloid scan is only available in research centers but will
be available elsewhere in the next two years if the fda approves it
the volumetric mri and the glucose metabolism pet scan can be done
at many radiological centers now
hope this is helpful to those of you that have asked about them
POST VIDEO
taping the video was fun
dang sure was a lot of retakes
hate to see what it would be like to do a movie
the video staff taped an interview with me then with the doctor
i see doing an office visit with me then with the research director
doing an intake interview with me and then with the testing person
doing part of the neuropsychological testing (asked them to do
the part that i could do correctly)
this is will eventually be on their new updated website
will post it when its all completed
POST VISIT
am sure they hate to see doctors as patients
know i hate being one
theres no changes in my medications and will do
a follow up in 6 months
not much to report
WORKUP
a close relative of mine has decided to undergo an evaluation
mainly as a baseline for future reference
the relative took the article that was written about my situation
to the doctors visit
she is now having an evaluation done that sounds like its everything
that should be done to evaluate someone
this is probably a good idea since
the relative is probably at a higher risk than most people because of
our shared genetic history
remember most cases of alzheimers ARE NOT genetic
it just happens that it probably is in our families genes
the earlier this is picked up
the earlier medication and preventative stuff can be done (we all should
be doing those things anyway)
the medications can delay things for awhile
it gives us time with our families
and in my case i savour each day
which i may not have been doing if i didnt know
good luck with the evaluation
the organicgreen doctor
tried to post a beta amyloid pet scan of a patient with
mild cognitive impairment yesterday on facebook
that would not post so im posting it here
the red stuff is not suppose to be there
this is actually from a patient with alzheimers disease
but a patient with mild cognitive impairment who has
advanced some will look similar to this
that red stuff is beta amyloid
thats what is thought to be the cause or the end result
of whatever is causing alzheimers disease
if we can stop this deposition of the beta amyloid in the
brain or remove it early with meds or a vaccine then we
will be getting somewhere in the prevention and cure and
treatment of the big A
this is a glucose metabolism pet scan
the red stuff in this scan is suppose to be there
its radioactively labelled glucose
the more the merrier
in mild cognitive impairment its reduced
and in the big A its even reduced more
the brain cells that are damaged cant metabolize
glucose well so they start dying
the other scan that is done is the volumetric mri
on the right is a normal beta amyloid with a normal
volumetric mri (vmri)
on the left is the abnormal beta amyloid with the red stuff
and just below this is an abnormal volumetric mri
with increase size to the ventricles in the middle that looks
like a bird in flight and the decrease in the hippocampal area
on the under surface of the brain
-the hallmarks of early alzheimers disease or mild cognitive impairment
these then are the three scans that i am aware of that are used
in working up alzheirmers disease or cognitive problems
the beta amyloid scan is only available in research centers but will
be available elsewhere in the next two years if the fda approves it
the volumetric mri and the glucose metabolism pet scan can be done
at many radiological centers now
hope this is helpful to those of you that have asked about them
POST VIDEO
taping the video was fun
dang sure was a lot of retakes
hate to see what it would be like to do a movie
the video staff taped an interview with me then with the doctor
i see doing an office visit with me then with the research director
doing an intake interview with me and then with the testing person
doing part of the neuropsychological testing (asked them to do
the part that i could do correctly)
this is will eventually be on their new updated website
will post it when its all completed
POST VISIT
am sure they hate to see doctors as patients
know i hate being one
theres no changes in my medications and will do
a follow up in 6 months
not much to report
WORKUP
a close relative of mine has decided to undergo an evaluation
mainly as a baseline for future reference
the relative took the article that was written about my situation
to the doctors visit
she is now having an evaluation done that sounds like its everything
that should be done to evaluate someone
this is probably a good idea since
the relative is probably at a higher risk than most people because of
our shared genetic history
remember most cases of alzheimers ARE NOT genetic
it just happens that it probably is in our families genes
the earlier this is picked up
the earlier medication and preventative stuff can be done (we all should
be doing those things anyway)
the medications can delay things for awhile
it gives us time with our families
and in my case i savour each day
which i may not have been doing if i didnt know
good luck with the evaluation
the organicgreen doctor
Friday, August 26, 2011
big a, stages
BIG A
all the childhood leukemia is almost 100% curable now
it looks at genetic tests, dna and rna analysis, spinal fluid analysis
for tau protein and beta amyloid, pet scans for glucose metabolism,
this study will provide a lot of useful data that can be used to
x
x x
x x
x x
x x
x x
xxxxxxxx
x x
x x
x x
x x
the big a is now replacing the big c
more americans are beginning to worry about getting
the big a-alzhiemers than are worried about getting
the big c-cancer
as the big a is the only one of the top ten diseases that
kills people that you cant do anything to prevent it
this is where the fight against cancer was several years ago
all the childhood leukemia is almost 100% curable now
so many cancers are caught early now that they can be
treated and cured or controlled
the awareness of signs and symptoms of cancer are
everywhere for people to read and think about
everywhere for people to read and think about
so the big a is in its infancy compared to the big c
a lot of research is going on to try to identify what really
causes the big a and what you can do to prevent it
then a lot of research is being done to identify people
at a younger age who are risk for the big a
there is a lot of research being done to find treatments
to prevent this disease and to treat this disease at
earlier stages (like mine)
the study that i am in in dallas the alzheimers disease
nucleoimaging initiative (adni-2) is a study that is looking at tools
to identify people earlier by following people who dont have the
disease, people real early with the disease, people with slightly
more symptoms with the disease and people with
full blown alzhiemers
nucleoimaging initiative (adni-2) is a study that is looking at tools
to identify people earlier by following people who dont have the
disease, people real early with the disease, people with slightly
more symptoms with the disease and people with
full blown alzhiemers
it looks at genetic tests, dna and rna analysis, spinal fluid analysis
for tau protein and beta amyloid, pet scans for glucose metabolism,
pet scans for beta amyloid, and neuropsychological exams over
a period of 5 years
this study will provide a lot of useful data that can be used to
catch people early and hopefully eventually do something about
this terrible disease
lets erase or dim the big a
support your local walk to end alzhiemers at www.alz.org
arkansas at this link
texas at this link
louisiana at this link
california at this link
remember november is national azheimers month
STAGES
there are 7 stages of alzheimers disease
go to this link to read more
stage 1 is where those of us with the disease were when we had
no symptoms
stage 2 is where i am at
i notice symptoms but other people dont notice them
stage 3 is where pat summitt is at
many at this stage can function well with limitations
stage 4 is where glenn campbell is probably at or he may be late
stage 3
he is about to do a tour for his new album even though he has
the big a
stage 4-5 is where my close relative is at
stage7 is the final stage and is where my mother was at
when she died
these stages give you an idea where your friends or relatives are at
with their disease
be patient with them
help the caretakers
the organicgreen doctor
STAGES
there are 7 stages of alzheimers disease
go to this link to read more
stage 1 is where those of us with the disease were when we had
no symptoms
stage 2 is where i am at
i notice symptoms but other people dont notice them
stage 3 is where pat summitt is at
many at this stage can function well with limitations
stage 4 is where glenn campbell is probably at or he may be late
stage 3
he is about to do a tour for his new album even though he has
the big a
stage 4-5 is where my close relative is at
stage7 is the final stage and is where my mother was at
when she died
these stages give you an idea where your friends or relatives are at
with their disease
be patient with them
help the caretakers
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
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
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
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
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