my story revisited #83-my brother revisited

MY STORY REVISITED #83-MY BROTHER REVISITED

yesterday as we drove down to ucla to do my first mri in the continued biogen aducanumab study i thought a lot about my younger brother who died in the final stage of alzheimers disease about 6 months after i wrote this blog
i would see him one more time after that visit


a lot of thoughts went through my head as i stood and looked at the entry to the mri research center where i would get my first of nine mris in biogens aducanumab study 

during the mri scan you are locked in place
for me yesterday it was around 30 minutes
i usually close my eyes and day dream

why me i thought 
why am i still here 8 years later and he is gone

it has taken a lot of effort on my part to get to where i am now soon to get monthly infusions of biogen aducanumab that will probably slow down the disease some 
how much it slows things down we wont know for a couple of years

would it have helped him or was his disease too advanced 
i think it was too late for him
it would have had to be started even before he was diagnosed 

all of this wasnt available when he was alive

now you can get in treatment studies that may help
you can get an early diagnosis 
for some they can even be diagnosed before symptoms start

we are getting closer to a treatment to slow it down some

its like having a terminal cancer and you opt for chemo treatment to slow the cancer down some knowing you will not get a cure

most of us in the alzheimers world would accept slowing it down some

even for me it may be too late
it would have been better if i could have been treated 10 years ago

for his kids and my kids and their kids there will be treatments available 
some before symptoms start

whatever time it gives me by slowing things down i will take it
__________

02-01-2013
MY BROTHER


this is what my younger brother did for years
as a fireman
he retired after twenty years as a captain
then
after retirement he worked for several years as
a deputy sheriff who traveled with a drug dog
all the time
he served a rural area by himself and one of his
dogs were always by side
he could signal the dog who stayed in the car when
he stopped someone but a signal brought the
dog out immediately
he and his dog found a lost 5 year old once and was
used multiple times to track escaped prisoners or
lost persons

so thats his face my brother
a father a fireman a policeman
a hardworking likable friendly helpful person

this has all now been stolen from him by the disease
alzheimers



its a slow process sometimes
it steals your ability
to drive
how to operate the car
you cant find the keys
you cant find anything
you are lost inside
your family feels you slowly drifting away
daddy honey where are you
we miss you so much and want you back

but alzheimers you see is unforgiving
you dont ever come back you just continue going away
until its all over

these are the things i think about a lot
especially like i was two weekends ago
visiting with my brother in the alzheimers center
the stare the alzheimers stare he has now
its the same that my mother had
the occasional smile so you know hes in there somewhere

that robust fireman
that honorable deputy sheriff who was fair and honest
and who did good things when he rescued that little girl
and when he protected us
now he is reduced by this terrible disease to a core of himself

its so sad so sad
i think about him a lot and even dream about him a lot

heck last night he and i went with my historian brother who was
driving a large truck cross country
we had some good adventures together like we did when
we were younger some we can never talk about
then i woke up
and i came back to reality

alzheimers has and is stealing him away
like it stole my mother and started stealing my dad

there is a chance
and time will tell
when it will begin to steal me

you know
im ready if that happens
it seems mine may be a slow process
at least for now
so i have time to enjoy things and to do things i might not have
done if i didnt know
i wish he would have known too so
he could have extracted more like i am from life

at least i know
and can deal with it
its the not knowing and having it sneak up on you and your family
i think is worse

so brother
we miss you
we think of you every day
but i remember the fireman the deputy sheriff the father you were

love

the organicgreen doctor
__________
when i was diagnosed in 2010 i really didnt think that today some of you who were my patients would still me messaging me asking me health questions and i would still be cognitively intact to be able to answer your questions 

i know how lucky i am to still be here and be cognitively normal ten years later

the organicgreen doctor