my story revisited #163-my story revisited

MY STORY REVISITED #163-MY STORY REVISITED

as i read my old blog linked below i realized that writing my blog is like doing a diary
when i go back to read some of my old blogs they trigger memories 
its interesting to see what i was thinking
and
compare what i wrote to whats happening today

i looked for a new years resolution blog i may have written the first new years after my diagnosis but it was only a few lines

this blog below explains where i was at with my life about 2 weeks after being diagnosed and stopping my medical practice

when i wrote that i didnt envision that today i would be sitting here writing about my blog i wrote 12 years ago

i really thought i would be in a memory center by now
but
so far i am not

an aside
my memory tests done two weeks ago were all in the normal range for my age
it was not the case when i wrote my old blog 12 years ago
eg my moca memory test score then was about 25 
two weeks ago i scored a 30 which is normal with no missed answers

i wrote 12 years ago that you could not definitely diagnose alzheimers disease
well now you can
after the initial evaluation of a neurological exam labs in house memory test like the moca and a mri
then you can more definitely make the diagnosis with an amyloid pet scan or a spinal tap for amyloid and tau
soon you can add an alzheimers blood test

when i was diagnosed those werent being done
i got all of them later in my research studies
the spinal fluid tests i paid for myself
the amyloid pet scan i got the results of when i got into the biogen aduhelm or aducanumab clinical trial
i have had the alzheimers blood tests but i dont get to see those results
the alzheimers blood tests should be positive

i chose to start aricept or donepezil early on in my diagnosis
it turns out that probably was a good decision on my part starting it early 
some neurologists dont believe it helps but others do

subsequent studies have showed that folks who start aricept or donepezil early in the diagnosis did much better than those patient who didnt take the drug early 
their memory scores were much better over a 12 year time period
they also lived longer
i read where one neurologist said that aricept results after long term use looked better than my drug aduhelm or the new antiamyloid drugs 

i told the research neurologist the other day that if i went into a doctors office for memory testing and they didnt have all my medical history they would tell me to not worry about it but come back when i notice i have a problem

so yes im better than i was when i wrote that blog below 12 years ago

i cant complain today about where i am

today we drive down to ucla so i can receive my #25 infusion of aduhelm or aducanumab
i have at least 1.5 more years of infusions left or about 18
then i will need to make a decision on which direction to go 
__________
01-07-2011
MY STORY REVISITED
because of the increased viewers of this blog i will
revisit my story

i am a family physician

one year ago while buying long term care insurance i had
a normal neuropsychological evaluation

a year and a half later i underwent an evaluation to be in an
alzheimers research study as a control subject

i wanted to be monitored annually so that if i developed any
symptoms of alzheimers that i would know and would
know to stop practicing medicine

a neuropsychological evaluation done for that
showed changes in short term memory that was abnormal
for my age and occupation

looking back i had noted some changes but no one
else had

my mother had alzheimers disease and a close relative has
alzheimers disease

my diagnosis was made as early mild cognitive impairment
amnesic type
it is thought to be a precursor to alzheimers disease

a normal evaluation, then a year later an abnormal test  plus
the changes i had noted plus my strong family history made
this clinical diagnosis

there is not a definite test for alzheimers -it is made as a
clinical diagnosis early into the disease

my decision and along with my neurologists decision was that
i start aricept (donepezil)-my mother was on it and my relative
is on it-to slow down the progression of the symptoms which
progress slow or fast

however nothing slows down the disease
(see blog on napa 1-6-11)

i elected to stop practicing medicine as i always had
concerns this would happen and
i did not want to cause any harm to my patients if this
process progresses

where is my future
i will continue to be in a study at the alzheimers research
center at the university of texas southwestern medical center
i will now be in the study group and not in the control group

i will continue to blog about my involvement in that study
and with my treatments and evaluations as they are done

i want to give a doctors view of all this while also being
a patient

i have had normal lab work and a normal mri
these were looking  for treatable diseases that can cause
these symptoms

i will have genetic studies, more blood tests, a lumbar
puncture, and a pet scan soon     these are looking for
some of the changes that occurs in alzheimers

i will either
1   stay the same forever or
2   completely clear up or
3   slowly progress to alzheimers or
4   rapidly progress to alzheimers

a bad thing can be a good thing
i know now
my wife she and i can plan for the future
i can be involved in educating people about this disease
my involvement in the study is my small part in finding
treatments and cures for this disease
__________
i really think i am doing so well because i
istarted aricept or donepezil early on 
got aggressive with my health
stay busy socially mentally and physically
started aduhelm or aducanumab even though my first 18 infusions were placebo

lets hope it continues this way

yep
i have no regrets

the organicgreen doctor

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