in 2011 the new alzheimers disease diagnostic guidelines were published
the previous ones were published in 1984
the link in the blog i wrote in 2011 is to the ny times which now requires you pay to access the article
also the link to the alzheimers association page on this has expired or is no longer available
here is a link to the guidelines from the national institute on aging nia and the national institute of health nih
there are 3 categories
preclinical no symptoms but positive biomarkers
mild cognitive impairment mci mild symptoms with positive biomarkers
alzheimers disease worse symptoms with positive biomarkers
the biomarkers are spinal fluid analysis for amyloid and tau proteins and postive amyvid pet scan for amyloid
these biomarkers werent readily available in the private world back in 2011 but now they are
still insurances companies wont pay for them or for the genetic tests
my biomarkers were all positive
ie the spinal fluid for amyloid and tau levels were abnormal and my amyvid scan was positive for amyloid
eg to get in the biogen aducanumab i just finished you had to have a positive amyvid scan
in the article linked above and my blog back in 2011 the genetic testing for apoe 4 is discussed
just doing it without understanding what it means can cause folks to worry a lot
if you have the apoe 4 single gene you have an increased risk of getting late onset alzheimers at an increased risk of about 5 x
if you have the double gene apoe 4 then you have a 15-20x increased risk of developing late onset alzheimers
does this mean if you have apoe 4 gene you will get it
no
it will probably be based on how well a healthy life style you lead
i personally am glad i know i have it as it has made me be more aggressive in taking care of my health
plus
getting my early diagnosis has also made me be even more aggressive with my health
and
has helped force us to get all our long term and final plans done
thats the good things of knowing early
also a warning
be careful of getting this apoe 4 on your medical records
it may affect your ability to get long term insurance maybe disability insurance maybe life insurance and if they get rid of preexisting conditions you wont be able to get good health insurance ever
until you qualify for medicare
then i briefly mentioned my disability insurance
it would be almost 9 months after i had to retire for my private disability insurance to start
they had to prove that i had what they said i had
they got all my records but that wasnt good enough
so
they put me through an 8 hr neuropsychological exam
i guess trying to wear me down
my approach was to go in there and do the best i could
thats what i did
i eventually got my disability starting with back pay for 9 months
luckily my private disability wasnt taxable
but
when i was forced to apply for social security disability
well that was all taxable
since i got a check for 3 years of social security i got put into a much higher tax bracket
i received my private disability until i was 65 ie i got it for 5 years
my advice is to make sure you have disability insurance either where you work or buy it privately
dont expect to rely on social security disability
it can take 2-3 years to get it and its taxable
they make it hard for you to get it
this was all before the tax cuts that were passed with this administration
my tax rate i paid was much higher than most millionaires and billionaires pay now
doesnt seem right does it
then
i did one of several smaller research studies this one an online computer memory test
another one i did later was a video long distance neuropsycological test and later i did a sniff test to see if my ability to smell had been affected
XXXX
04-20-2011
NEW GUIDELINES
new guidelines came out yesterday in an article on the classification
of alzheimers disease
this is significant since the last time this was done was 1984
this article in the ny times on alzheimers guidelines does a good
job describing the new guidelines and why they are important
these guidelines were used when making my diagnosis
mild cognitive impairment amnesic type felt to be secondary
to alzheimers
the testing that is discussed in this article and the guidelines are
not all readily available but i have had them or will have them
this month
these guidelines are important as they will identify people early
with the disease
hopefully these will provide tools for family doctors to use to
identify people earlier
in my case it was good that i was identified so that i could plan
my life and that i stop practicing medicine before some harm
was caused as my disease progressed
some people dont want to know but not me
it has made my life better knowing now (i have always feared it
would happen)
luckily i have disability insurance that should kick in soon to help
with my financial situation and i have long term care insurance
to cover long term care later in life and i have health insurance
(notice these need to be obtained before the diagnosis is made as
you cant get life insurance, disability insurance, long term care
insurance or health insurance with my diagnosis)
with these new classifications as more people are identified earlier
then more research can be done on those people with the
disease earlier than before
thats why the study im in now is important as they are looking at
people with normal cognition and with an early diagnosis like mine
now new drugs and new tests can be designed to attack this
disease
it wont help me but it may help you or your kids or my kids
full article if you are interested is at
http://www.alzheimersanddementia.org/content/ncg
next week i have a mri then will do other tests later
ANOTHER STUDY
next week i will also be involved in another study in which the
university is developing an online neuropsychological test that
your family doctor or neurologist can order on you
you can go online and complete it then it is sent to a
neuropsychologist to interpret
the report is then sent to you doctor
hopefully this online test will make it easier to get tested
i will be taking the online version of the test for the study
they are doing but it may not be available to the general
public without a doctors order
if it becomes available i will blog about it
remember on these genetic tests eg huntingtons, alzheimers, etc
you dont want it done until you have all your insurances lined up as
you wont be able to get them once it is placed in your medical
records
XXXX
our santa barbara walk to end alzheimers is on saturday november 2, 2018
here is the link to my team and the walk site
click and donate and or join us
or
donate or join your local walk where you live
the organicgreen doctor
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