yesterday as my son and his wife and mr h were driving down to ucla for mr hs transplant office appointment the topic of apoe 4 came up
i had just a few days before been down to ucla for my 3rd or 21st infusions of the aducanumab experimental alzheimers drug
it was the 3rd if i was on placebo before
it was the 21st if i got the real drug aducanumab to begin with
again i really feel like i got the real drug to begin with
talking about this with them led to a discussion of the apoe 4 gene and what it means
could he have the apoe 4 gene she asked
he has the apoe 4 gene i answered since i have the apoe 4/apoe 4 gene
he probably doesnt have the double version since his mom my wife she probably doesnt have it
the same with his brother
an explanation is below
also if you look at all my siblings below my younger brother who died with alzheimers disease probably had the apoe 4/apoe 4 gene
if his kids asked me the same question
i would say yes you probably have at least the single version of the gene
should i get tested
no i said
it doesnt really matter yet
just take care of your health and it wont matter much about the gene
dont take care of your health and it will matter a lot
remember
25% of you reading this have the apoe 4 gene
less than 3% of you reading this have the apoe 4/apoe 4 gene
this all made me start thinking about my family ancestry and how much dementia was in the family
so over time i have asked cousins and my two older siblings about aunts and uncles and grandparents and great grand parents if any of them had dementia
i knew there was a lot of dementia in our family i just didnt realize how much
i had never just put into a family tree before
so below is my family dementia tree
the D under a symbol means that the person has or died with dementia
some of the other relatives i dont know if they had it or not
when i looked at this family dementia tree
i worked my way to each one many i knew and many i didnt know
it when you see it like this seems sobering
ok so i cried again as i thought of my brother and mom and dad and aunts and uncles and cousins and grandparents that had this awful awful disease
but thats ok if i cry sometimes
right
the eight symbols on the bottom right are me and my siblings
the one with the * and circle is me
yes i got that awful D by my symbol
the one next to me is my younger brother who was diagnosed in his mid 50s and died in his early 60s
the one on the end on the right is my older brother who was diagnosed a few years ago with mild alzheimers and now is fairly stable on his minimal symptoms
all the other siblings have been memory tested and are in the normal range for now
both my parents had alzheimers disease
my dad wasnt officially diagnosed but he had it when he died
my mom probably had the double apoe 4 gene
my guess is that my dad had a single apoe 4 gene
since i am double apoe 4/apoe 4 i got a gene for each parent
if my parents genes are as above then each of my siblings will have the apoe 4 gene
some will be like me and probably my younger brother and have the apoe 4/apoe 4 gene
should they be tested
no and yes
no it doesnt matter just take care of your health is the recommendation
yes if you want to know and if you really really really understand what the results mean
knowing does cause a momentary moment of melancholy but it did at least for me make me more aggressive in taking care of my health since the single gene increases your alzheimers risk by about 3-5 x
a double gene increases it by about 15-20 x
i had this momentary melancholy after i got my genetic results
and
again when i got my amyvid pet scan even though i knew it would be positive
then i moved on
have any of my siblings been tested
yes two of us have
if you look at my tree you will see that all my moms 4 siblings died with dementia
her mother my maternal grandmother died with dementia
her grandfather my maternal great grandfather mggf died with dementia
if you look at my fathers side you will see that at least two of his siblings died with dementia
some of his siblings i dont know their history
his mother my paternal grandmother died with dementia
he had two nieces and a nephew my paternal cousins that died with dementia
so you look at all the Ds in that graph you will see a lot of folks have dementia or died with dementia
why
it has to have a genetic component
my guess its the apoe 4 gene sort of known as the late onset alzheimers gene
it puts you at greater risk for dementia than those without the gene
the single apoe 4 gene risk is about the same as someone with diabetes who doesnt take care of their diabetes
things that accentuate the risk if you have the apoe 4 gene or the apoe 4/apoe 4 gene are
not controlling high blood pressure cholesterol diabetes weight exercise diet sleep stress etc
not controlling these if you have the gene makes it more likely you will get alzheimers disease
controlling these makes it more likely that you wont get alzheimers
if you have the double version it is even more important to be aggressive about your health
also smoking which was more prevalent in past generations also accentuates the risk for alzheimers especially if you have the gene
now
there are other genes that are being identified and will be indentified to put you or us at risk
these will eventually be available for testing in the future
for now
my recommendation is
should i get tested you ask
only if you are ready emotionally socially to handle it and understand what it means
i must say having my diagnosis and knowing i have this gene sure motivates me everyday
as i was writing this blog and reading about new blood tests for alzheimers disease i realized that my blood from the adni study and now with the aducanumab study is out there being studied at universities all over the world
i think since it makes me feel good if its true that somewhere in some university lab they have my dna or my rna or my blood serum and they are doing tests on it that will help discover either a test for alzheimers that we all can have done to tell us if we have it or if we will get it
or
they will discover some treatment for alzheimers that we will all get to use one day
that would make it all worthwhile if it was my dna rna or serum they used to make these discoveries
of course
i will never know if it was mine that was used
the organicgreen doctor
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