my story revisited #180-top questions you ask me revisited

MY STORY REVISTED #180-TOP QUESTIONS YOU ASK ME REVISTED

in 2015 i wrote about the top 3 questions i am asked about memory

here are my answers today 8 years later

should i be tested
yes if you are having memory issues
my answer is about the same
there are treatable causes of memory loss that can be treated
eg a low vitamin b12 or depression or mediation side effects
now add perimenopausal symptoms
you can definitely tell if you have alzheimers today with the amyloid pet scans and spinal tap for amyloid and tau and soon to be available the alzheimers blood tests

dont put off getting memory tested
if it is dementia its important to know and began treatment asap
i am the poster child for that approach

should i have genetic tests done
if you have memory loss that could be dementia my answer is yes
the early onset dementia that is genetic can be diagnosed with a blood genetic test
it runs in families
if its positive you will get alzheimers at a younger age
you may pass it on to your children

there is no treatment 
one couple who had a parent with early onset alzheimers had genetic testing done on their eggs to pick one that didnt have the early onset alzheimers gene so they could have a child that wouldnt grow up and get early onset alzheimers disease

should i have genetic tests done
thats a personal individual question for each person to ask
do you want to know

my thoughts for myself would be if there is a strong family history of alzheimers then i would definitely get tested

the early onset gene 
if you have this one you will get early onset alzheimers

the late onset gene
this is called the apoe 4 gene

if you have it your chances are increased you will get late onset alzheimers
if you have the gene you can beat the odds of it leading to causing late onset alzheimers by aggressively controlling your cholesterol controlling your blood pressure controlling your diabetes eating a mind diet staying active mentally physically socially maintaining a normal weight controlling depression or anxiety and getting adequate sleep

then
consider getting a blood test for amyloid when it becomes available soon
this is a screening test for amyloid buildup in the brain
its now used to screen patients for clinical trials for alzheimers treatment drugs
if yours is positive and you have the apoe 4 gene you definitely need to be aggressive in doing all those healthy things one is suppose to be doing anyway just more aggressively

if you get a positive test for apoe 4 especially the apoe 4 apoe 4 gene it wakes you up real fast that  you need to be aggressive in taking care of your health
you future longevity is in your hands

also consider getting in a clinical trial treating prealzheimers patients if you are apoe 4 positive
prealzheimers means you have positive amyloid in the brain but have no symptoms yet

soon
my guess is that aduhelm and leqembi and donanemab will get approval to treat folks who are prealzheimers
eg 
for me i have apoe 4 and my amyloid blood test and amyloid pet scan would have been positive when i was in my 50s
had these anti amyloid drugs been available then i would have taken them then

my guess is that you would get a treatments of say a year then get intermittent treatments annually or every 3-6 months to keep down the amyloid from accumulating

clinical trials like the ahead study using leqembi are ongoing at multiple sites across the us

i think this is where alzheimers treatment is heading 
treating long before symptoms start

i compare this to testing for high cholesterol and treating it with medication years before so you wont have a heart attack or a stroke and now we know to add alzheimers to that list

how am i doing
my memory testing is in the normal range and has been that way for the last several years
i do notice some subtle things like name recall and word recall that can easily be explained by my age
i keep my cholesterol normal and my blood pressure normal
i am doing all those healthy things listed in todays blog

my next infusion of aduhelm is next week
i will have 11 more after that
then science will determine when i get my next maintenance treatments after that
maybe once a year or twice a year 
ill let science tell me what to do

_________
02-20-2015
TOP QUESTIONS YOU ASKED ME
i am always asked a lot of questions about alzheimers
dementia memory loss
and
of course lots of gardening questions and rainwater collection ones
but
mostly today ill address the top three im asked about memory

should i be tested is asked at every presentation i do
i answer it this way

if you are having memory issues
you should seek an evaluation
there are a lot of things that causes memory issues that are treatable
like low thyroid low b12 abnormal electrolytes liver disease
kidney disease depression anxiety stress sleep disturbances
medication abuse of drugs and alcohol poor control of diabetes
blood pressure cholesterol
just to name a few

fix these and your memory might improve

before you go to the visit
if the memory is significant have a family member do
an online questionnaire on you like this one
fill it out and print it to take with you

also write out what memory issues you are having
take them in with you
take someone with you since many providers like to
interview family members also

make the appointment just for memory and nothing else

during the evaluation you should be asked lots of questions
labs should be done
a memory test should be done

if you have an in office one that doesnt take 20 minutes or so
to do then you did not have a good one
they are called mmse or moca tests
they may do one called a clock test or minicog as a quick screen
but on that one you have to be more advanced to flunk it

you may need a neuropsych test and an mri

here is the link to a pamphlet that is a gold standard
for evaluation of memory loss for providers to follow
the link is at the bottom of that page to the pdf file

it soon will be available in a quicker reduced form
you can look at this online pdf file to follow your workup
to make sure a complete evaluation is done

dont get ignored if you do go somewhere else for the evaluation

should i have genetic tests done
i would say no if you are not ready to accept what you find
if you are not ready physically mentally emotionally and
financially to get bad news

if a positive genetic test gets in your medical record
you will not get life insurance disability insurance
long term insurance possibly professional insurance like
malpractice insurance and in some cases health insurance
which thank goodness for obamacare most people could get
it even with a diagnosis

i have had relatives and friends get genetic tests done
that show the apoe4 double gene
if its positive and its in your record you will have problems
as above

the genes for alzheimers are rare
less than 1%
if its heavily in your family you could have it
if you have the gene you will get the disease

the apoe4 gene double version is the next bad one to have
your odds are increased 10-20 times you will get alzheimers
but it doesnt mean you will
even then it can be hard to digest and accept your risk

that said
i would want to know and i did want to know
so i got tested
granted this was after already being identified as having
memory loss
and
labeled as amnestic mild cognitive impairment
and
having been shown to have abnormal levels of beta amyloid
and tau in my spinal fluid

so as part of a total workup i had it done
probably without symptoms i would not
but
lucky for me i had all of my ducks in a row re insurances
when my diagnosis was made

that said
knowing you have this increased risk sure makes you more
aggressive in taking care of you health
which i think determines how this apoe4 gene will affect
your memory loss

how are you doing
i must say that compared to 4 years ago when i was diagnosed
and
took all my tests and did all those memory tests and
neuropsych tests
i am much better as evidenced by my scores now on those tests
and
based on what i feel and notice myself

i feel like that fog that was hoovering over me for a couple
of years seems lifted some

why
once all this happened i got very aggressive with my health
my blood pressure was always borderline high
it would come and go
so i gave in and got on a blood pressure medicine that keeps
it normal all the time now

my cholesterol was under pretty good control
but i have aggressively got my levels to those that someone
with heart disease or increased risk for heart disease should
have theirs at
specifically my ldl is less than 100 and my triglycerides are less than 100

i stay very active physically mentally socially as much probably
as when i was in practice if not more

i take aricept which could be part of the reason why im better

stop it and i will find out but im not willing to do that though
the problem with aricept is that it interferes with my sleep
i only get 5 hours a night
but
i compensate that with an afternoon nap
and
i now take a nightly herbal medicine that seems to get me back
my 1-2 hours i am loosing to the aricept
usually
but i do most of the time feel rested

that said the aricept causes a lack of energy and tiredness that
usually hits me in the afternoon
hopefully i dont demonstrate that tomorrow afternoon at the movie

luckily usually i am napping and have done most of what i
like to do in the morning

i take b12 supplements and vitamin d3 supplements since both of
these were low when i had blood tests for them

i eat a mostly vegetarian diet about 90%
i eat a morning egg and toast dried nuts and fruits
i do eat meat but its lean meat like turkey and range fed beef
some occasional chicken
i follow mostly a mediterranean diet
but if i go out to eat i eat what i want too

i am not depressed i dont feel stressed i feel happy and contented
i dont get angry it seems

then
i have been following the protocol from the
reversal of cognitive decline study from dr bredesen from ucla
most of which i was doing already

putting all that together
the answer is
i think i am doing better


still alice
the special showing of still alice  with the alzheimers association at 155pm which
will have a panel that includes me and two others to answer your questions
afterwards
is sold out

it is showing several other times that day and at other locations in austin
for you to see it
it is a must see movie for i think everyone
even young folks since i think they need to be thinking about this

for those who got tickets to the q&a session ill see you there
_________

so my answers are about the same
maybe i would be more aggressive with genetic testing and early treatment of alzheimers

watch still alice to see what happens to the patient and their family as the disease progresses

the organicgreen doctor