MY STORY REVISTED #100-MY LAST MEMORIES OF HIM
i am reading a book by dr daniel gibbs a neurologist
the books name is a tattoo on my brain
its the story about his journey with the diagnosis of alzheimers disease
his story is eerily close to my experience
although he is slightly ahead of me in his disease
if you want to know what its like to go through this read his book
he does a good job of documenting his journey as a patient and as a physician
sounds familiar right
much of what he has experienced i have experienced
mine is just documented scattered throughout this 11 year old blog
his is confined to this book
plus he does lots of interviews and gives presentation
so do i but he does a lot more
he is gradually having to cut back on what he does
so far i havent had to do any of that
yet
the moca is a memory test that is used to follow your progress
a perfect score is 30
the normal score is 27-30
mci (mild cognitive impairment) score is 26 and below ie 19-26 with average mci being 22
mild alzheimers score is 11-21
when i was diagnosed mine was 25
mine now is 29-30
his runs around 25-26
he feels his is dropping some
i dont feel mine is dropping any
yet
we both are in the aducanumab study
we both got the placebo in the beginning
he developed aria or amyloid related imaging abnormalities on mri
these are microscopic bleeds as the drug removes amyloid from the brain
he developed significant symptoms
but has recovered now
i so far have not had any aria symptoms
we both are apoe 4 homozygous the late onset alzheimers gene
we both are on aricept (donepezil)
he started his later in his disease and saw an immediate effect
i started mine as soon as i was diagnosed
we both agree thats one of the reasons we are doing ok for now
we both were diagnosed earlier than most patients
we both were interviewed a few weeks apart by being patient
here is is link to his interview
reading his book and watching his interview and reading his interview i thought a lot about my younger brother wondering where he was in his live when he had my symptoms
my guess it was several years before his diagnosis
i caught mine because i volunteered to be a normal control study subject for the adni study
otherwise it may have been months or years before mine was discovered
dr gibbs because of his specialty of taking care of dementia patients and lecturing students was acutely aware of real subtle things that dont show up on memory tests
he actually quit before his memory tests were abnormal
as he found out later he was right in what he did
so i thought of my brother a lot this week
the first old blog that showed up on my screen this morning was the one below where i am remembering him
all documented 8 years ago
these thoughts are captured in my story each week
im glad i have documented them
that would push his early subtle symptoms into his later 40s
more obvious symptoms in his early 50s
his moca if i was to guess when he was diagnosed would have been probably 11-12
the end of mild alzheimers headed into moderate alzheimers
reading this book
a tatoo on my brain
he wrote he stopped practicing early when he noticed memory issues
so did i
why
we didnt want to harm others
maybe thats why my brother retired in his 40s
maybe he knew something wasnt right
having gone through this myself
you know
just like dr gibbs knew
__________
06-03-2013
HE DOESNT DESERVE THIS
my younger brother doesnt deserve having alzheimers disease
he is too young and in too good of health otherwise
he is too much of a good guy
for those who know me and dont know him if you like me
and like my approach to life trying to do whats right for people
then you would definitely like him too
we are different in many ways
he was an avid hunter i am not
but i did go hunting with him a few times
and enjoyed the time together
we usually didnt agree on political and religious views
and some social views
but it was interesting that sometimes our views ended up
being the same
but none of this ever became an issue with us
except for some good friendly bantering with each other
he was always respectful of how i felt and
i think i was of how he felt
looking back i wish i had taken advantage of being with him when
i could more and enjoying the moments together
the last good time we had together he and his wife came to visit us
here in the austin area
he and i drove together just us to a nearby town to pick up a large
rainwater tank i had found at a real cheap rate which we later gave
to my wife shes high school to use in their new garden area
we enjoyed that two hours together talking
mostly he understood what
i was saying and he had not advanced so far so that i knew what
he was talking about
sometimes his words were stuck in there somewhere and would not
come out but mostly they usually did on that trip
that was really the last time we were together alone where we really had
a good meaningful interaction together before
this awful alzheimers disease progressed
his present status is that he is mostly wheelchair bound and has to
be fed and cared for
occasionally that smile of his youll see come out
i dont get to see him as much as i would like
but there is not a day i dont stop and think about him
__________
as i write this today i realized that he died about 2 months later
he probably knew he had it early on
dr gibbs knew
i knew
if you know
then get evaluated early on
the organicgreendoctor
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