welcome to the organic green doctor blog

i am a family physician who was diagnosed with
early mild cognitive impairment(mci) amnestic type on december 21, 2010
this is a precursor to alzheimers disease
because of this diagnosis i have opted to stop practicing medicine
this blog will be about my journey with this disease
please feel free to follow me along this path
i will continue blogging on organic gardening, green living,
solar power, rainwater collection, and healthy living
i will blog on these plus other things noted to be interesting

Friday, January 22, 2021

alzheimers news-should you get alzheimers genetic testing


my answer to that question when people ask me is maybe

i hadnt thought much about this lately until two things that happened recently 
one was as i was standing in the nice pleasant sunshine by our garage waiting for the arrival of ms m and mr hudson
my cellphone rang
i almost didnt answer the number since it was from the los angeles area
you know you get tired of those junk phone calls
something inside said answer the phone
i did

is this you
yes i said
well are you ready to get restarted on the biogen aducanumab study where you will restart receiving monthly infusions 
aducanumab is a monoclonal antibody that binds up amyloid and removes it from the brain
doing so may slow down cognitive decline
for those who may not know my amyvid pet scan was positive for amyloid prior to starting the aducanumab infusions
i got 18 infusions of what turned out to be placebo 
my last 7 infusions were the real drug
then the study was paused because of the pandemic
now its restarted

she told me in february i will come and to get a new baseline 
i was told to plan on spending about 5 hours there
more than likely i will get a ton of blood drawn again to make sure nothing has changed in a year
an ekg
a neurological history and physical
several memory tests
maybe an mri or possibly another amyvid pet scan

if nothing has changed then the infusions should start soon after that

one test they probably wont redo is the genetic tests for alzheimers
i thought of this fact after i hung up the cellphone i mean turned it off
since i had just recommended to someone the week before that they get their dad genetic alzheimers testing

now i have had alzheimers genetic testing done at least 3 times maybe more
one testing i did myself in a private lab
the others were done in the adni study and the biogen aducanumab and other research studies
the only one i got the results on is the one i did in the private lab
the results never change
you only need it done once
although i have suggested to some people to have theirs repeated in a more reputable lab just to be sure the original results were accurate

my results showed i didnt have the early onset alzheimers genes
i have the apoe 4 apoe 4 late onset alzheimers gene

the early onset alzheimers gene if you have it guarantees that you will get early alzheimers usually in your early 50s to early 60s
looking at a family history is important as there will usually be a lot of relatives that get alzheimers in that age range
i dont have that except for a cousin who got it in her late 50s and my younger brother got it in his early 50s
i dont think either of them had early onset alzheimers looking at our family tree

the late onset gene if you get it doesnt mean you will get alzheimers but means that you are at a higher risk 
one apoe 4 gene means you are about 5-10x increased risk
two apoe 4 genes like i have means you are about a 20x increased risk 

my family tree is riddled with people diagnosed in their 60s 70s and 80s with alzheimers

recently i was contacted by a daughter whose dad was in his 60s and having issues that could be alzheimers disease
he was an only child
his mom was adopted and he had no knowledge of her blood relatives
she developed alzheimers in her mid 50s and died from alzheimers

i recommended that he have alzheimers genetic testing to be sure he didnt have the early onset alzheimers gene
it doesnt make much difference in his care except for helping to make the diagnosis
he would still even with that test need or should consider a thorough alzheimers workup with neurology history and physical other labs memory testing mri of the brian and possibly an amyvid pet scan
his amyvid pet scan should be positive if he has the early onset gene

if he has it there is a chance that his kids has the early onset alzheimers gene
his grandkids could also

when the kids and grandkids are older there will be most likely  a pretreatment or treatment to prevent them from getting the disease

some couples with the early onset gene in the family do genetic testing on their embryos to insure they are not carry the alzheimers gene 
an embryo can be selected that is alzheimers gene free
this is done for a lot of diseases now

a lot of people are also getting tested for the late onset alzheimers disease gene 
the apoe 4 gene

many have reached out to me asking me what it means

i always say remember
25% of you will be positive for that late onset gene apoe 4
less than 1% have the late onset gene apoe 4 apoe 4
50-75% those with late onset alzheimers have the apoe 4 gene

many with a strong history of late onset alzheimers choose not to be tested
some do get tested

you have to know what it means
it doesnt mean you will definitely get late onset alzheimers disease
it just means you are at a higher risk
how healthy a life style you have determines how it affects you

when i got my results at first i didnt really understand this even though i was a physician
now i do
it helped that i have had to explain what it means to a lot of people

make sure you understand what it means and how  you will handle it
for me i already knew i probably had it
the test just added to the certainty of the diagnosis

remember if you have the early onset alzheimers gene you will get alzheimers

if you do get either of these tests and they are positive
understand that you are protected by law
you now have a life time preexisting condition that if the laws change 
which they almost did the last 4 years
you will not get
health insurance without limitations
long term care insurance
life insurance 
disability insurance
some jobs

when i was diagnosed luckily i had long term care insurance life insurance health insurance and disability insurance
had i tried to get them after the diagnosis i wouldnt have been able to get then without restrictions

if you have a positive early onset gene you have to think about do you want to pass this gene to your offspring
you have to plan for getting alzheimers in your fifties

for me
i would want to know
like i found out when i was 60
i have been able to plan my future the last 10 years

the answer 
to my question 
it depends 

the organicgreen doctor

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