my story revisited #186-telling my story to others

MY STORY REVISITED #186-TELLING MY STORY TO OTHERS

when asked back then how it felt to be diagnosed i said
it sucks

today i say the same thing
it sucks

today 8 years later i am in a better place then i thought i would be when i talked to the group at this dementia conference

i spoke like i usually do for about 20 minutes then let the audience ask me questions
the audience as mentioned below were mainly memory care workers and some families and patients
some were social workers some nurses some doctors some professors
as i remember that day i talked to them at their luncheon
it was suppose to be an hour but it over ran another 30 minutes 
there were still question folks wanted answered 

i have spoken at several dementia events like this and folks are hungry for answers

i give my answers as a family member as a family physician and as a patient

i call it the trifecta
but with this trifecta you never win

i still communicate with some of the folks that were there that day
some even stopped me in the lobby and the parking lot afterwards to ask me questions

i always take the time to answer their questions
some they cant get answers to from providers

telling my story to others
helps them
helps me

__________
04-17-2015
HOW IT FEELS
last fall while at a walk to end alzheimers i met the
head of the department of dementia and aging
at texas state university

he invited me to talk at the luncheon at a dementia conference
the department was having later that week
i had a previous commitment for that day
but
i said i would be glad to do a presentation at a future event
so
i got a phone call from his office
talked to him and his assistant

would you do a talk at the luncheon during our dementia seminar
aging dementia and the family
todays the date

we want you to talk about how you feel about being diagnosed
with possible alzheimers

well lets see
it sucks when i sit down pause and think about it
but
i guess i cant say that today can i
well maybe i can

now i dont pause often and ponder this
i did think a lot about it when my older brother
oldest of 5 boys
was diagnosed recently with early alzheimers disease
he improved later though when he improved the management of his health allowing him to come off memory meds
and
of course i really think of it a lot at the birthday of my
younger brother
youngest of 5 boys
since he died a year or so in the final stages of the disease
a terrible last several months to the course of this disease
disturbing it is when i think about him
one he was my younger brother
two i felt like i was looking in a mirror when i saw him
or think of him even now
for
this will be my fate im afraid when my time comes
im just hoping ive pushed that time down the road some

it all started with my mother developing this disease
so insidious in its onset
then it became obvious to all
then it just got worse

then my dad probably had it but he was spared the
course of the disease as he died of a heart attack

so ive seen it up close
and
personal

it sucks

i also viewed alzheimers as a doctor
since i had a few patients with the disease
i just didnt do a good job of treating them
a do over would be good

then
personally
since i may have alzheimers disease
the symptoms have improved some since i got my
diagnosis
i guess thats why i dont think about it as much as i
use to
out of sight out of mind right

but
its there
its not going away
like someone with cancer in remission
you just keep waiting for the time when it raises its head
again

time will tell

i plan to talk about this today as ive mentioned above
then
i will let the audience ask me questions for the rest of
the allotted time
an audience of professional workers in memory centers
students in the dementia and aging department
professors
maybe some caregivers
they ask the best questions since they dont usually
get good answers to their questions

wish me luck today
__________
well time does tell
i seem to be in good health
my memory seems intact
i stay active mentally physically and socially
i cant complain at where i am at today

on tuesday i go in for my #33 infusion of aduhelm in the embark study at ucla
i will have 9 more after that

one organization that helps make all thats happening in the alzheimers world happen is
the alzheimers association

their big fundraisers are the walk to end alzheimers

here is the info below on my walk 
look at www.alz.org for your walk where you live



join me for our santa barbara walk to end alzheimers on saturday october 14th
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