Wednesday, March 15, 2023

my story revisited #171-can we stop this

MY STORY REVISITED #171-CAN WE STOP THIS

it is my opinion from following the research that the answer will be yes
we can stop this before it progresses

it was about this time 8 years ago when i was starting to have improvement back to normal that i got a phone call from my older brother

he gave me permission to write about him 
please do he said if it helps someone else

from looking at his labs and memory testing and seeing his ct scan report he probably has alzheimers disease
he was placed on aricept or donepezil
i have been on this now for 12 years
my younger brother was on it as was my mother

he also had his heart completely evaluated had a pacemaker placed had his blood pressure meds and cholesterol meds and heart medicine fine tuned and had heart surgery
he said he changed his diet some and tired to be more active
he seemed to be getting worse so he had namenda or memantine added to the aricept that made him even worse so both the aricpet and namenda were stopped
these two are sometimes used together if the disease progresses 

since this was done he seems as near as i can tell to be stable
my guess it was the improvement in the management of his blood pressure and heart medicines and his heart surgery and his pacemaker that improved his memory
he basically was getting a better blood supply to his heart and his brain

this is an example of why you should have your memory evaluated early on when symptoms start
sometimes other health issues make things worse

so does he have alzheimers disease
probably 
it seems in our family its programmed to get worse in our late 70s and early 80s
my younger brother was an exception 
he was diagnosed in his early 50s and died in his early 60s

my guess is if you could go back in our ancestry tree you would find a lot of  folks with the apoe 4 gene some with the double homozygous apoe 4 gene and with high cholesterol and with high blood pressure and with heart disease and with strokes and with obestiy 

all are risk factors that are modified with diet exercise and medication nowadays

how many could have had a longer life if they had been treated at a younger age

then
now
add the ability in 2023 to diagnosis alzheimers before symptoms start
maybe in your 50s in my case

soon those diagnosed before symptoms start can and will be treated if they want to avoid alzheimers in their later years
starting soon probably in a few years with the new infusions of monoclonal antibodies like my aduhelm or the newest one leqembi and others soon to follow

those studies are being done now on prealzheimers patients
i was recently contacted by someone with prealzheimers who soon will be starting on leqembi 
this will probably delay the onset of alzheimers symptoms for hopefully several years
so maybe those folks will die of something else beside alzheimers in their old age

then if you add starting in your younger years with the mind diet or mediterranean diet and weight control and exercise and blood pressure control and cholesterol control and stress and sleep 
then
you might really push the alzheimers disease symptoms even further down the line

so 
the answer to my question
can we stop this 
yes
is my answer
__________
01-09-2015
NOT AGAIN
my historian brother is quite actively involved in doing
our ancestry through ancestry.com

he recently sent me a link which showed my ancestry
from my kids and nephews and nieces back through me
to my parents their siblings and their parents
it looked like a big tree pulled up from its roots
with my parents in the trunk area

i recently sat and looked at all the names on there


my mother died in the final stages of alzheimers disease
her mother died with dementia i presume its the same
her grandfather her moms dad had the same
all 5 of her siblings died with dementia

my dad probably had alzheimers disease when he died of
a heart attack
he was spared going into those final awful stages
his sister had dementia when she died
im not sure of his other siblings
his mom died with dementia

 
then in his early 50s my younger brother joe
the one with the blue eyes and smile
was diagnosed and died a few years later
in the final stages


then at 60 when i volunteered for an alzheimers study
in the normal group of a big study
it was shown i had short term memory loss
eventually getting the diagnosis of
early mild cognitive impairment amnestic type
that time between normal and alzheimers disease
it was felt to be probably due to alzheimers disease
and i was placed on aricept (donepezil)

most if not all my siblings went to their doctors later
to get screened for memory loss
they reported everything was ok

i remember sitting in the chair while doing my
neuropsychological tests
and
when they read those words to me
and
i couldnt remember them
i got this sweaty cold feeling
a surreal moment
i knew it was my time

last week i got a message
could you call me

so i called him back
i started noticing some problems with my memory so i went
to my dr
he did this test on me
from asking questions it was the mincog test
he didnt pass it
now i knew if you dont pass the mincog test then you are
farther along than i am
i could be 8-10 years before i reach that stage

so he said he had labs done that was normal
and
his ct scan of the brain
he couldnt have a mri since he had a pacemaker
showed changes in the brain where short term memory is stored

he placed me on aricept he said

who was this
its my older brother

i felt that same sweaty cold feeling again
and
i teared up

not again i said
its not fair

so that makes three of us brothers that got it
its not fair is it

i asked him
do you mind if i write about this and talk about this
when i do my dementia talks

no he said
i want you to

if you hadnt talked about it so much
i wouldnt have gone and got tested

if my story will help someone else
please tell it

so i just did
i like his attitude about the diagnosis
it really matches how i feel about talking about it

but
i still was thinking

its not fair
not again

we need a cure or treatment for our kids and grandkids
__________
so to my kids and my grandkids and to my nieces and nephews and cousins
yes
we are close to preventing and treating this awful disease that has hit our family so hard

take care of your health
treatment is almost here


update on my aduhelm study
i get my #28 infusion in two weeks
in two months i get my end of this segment of the study evaluation to include a few hours of memory testing a mri a tau pet scan and an amyloid pet scan
then
i will start an 18 month extension of this embark study i am on now

when i finish this one i will have to make a decision of what medication i want to be on
by then my study and several other studies will be reported out so i can have more than one treatment to chose from
hopefully cms or medicare and medicaid will come through and cover these treatments

a treatment or treatments that all those in my ancestry tree would have benefited from taking

we are getting closer to
stopping this disease

the organicgreen doctor

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