my story revisited 29-my first one

MY STORY REVISITED 29-MY FIRST ONE

my niece from lousiana contacted me the first year after i was diagnosed to see if i would do a skype q and a session with a group that was open to the public at her public library where she worked
so
i did

the questions were good
i learned a lot from the questions i didnt have good answers for
as i researched them all later

im sure i helped someone that was there that day to learn something about the disease
im sure if i could do it today i would do a much better job
but
this is where i started
i got to sit in the comfort of actually my wife shes classroom as she did all the technical hook ups that were needed to set up the skype feed

not long after i got all the testing done to make my final diagnosis i decided that i wanted to tell my story using it as a vehicle to get the word out on alzheimers disease and what folks could do to get evaluated and seek out clinical trials
so
i started with that skype session from texas to lousiana at that local library

over the last 9 years thats what i have done
i have done
at least two large alzheimers conferences and seminars
several large alzheimers programs with the area agency on aging
numerous small q and a sessions at several memory centers for employees and for family members and patients
these ones are the ones i like the most since those folks need answers they cant seem to get from the medical system
i have done 
my story presentations at several churches in the austin area
at least one two day conference where i did the session on the different dementias
that one i learned a lot doing as i prepared for my presentations
i did
several programs for the alzheimers texas alzheimers conferences
several early alzheimers conferences where i was on the panel answering questions
an alzheimers panel after a special showing of the movie still alice in austin
an alzheimers panel after a special showing of the documentary turning point at ucla on alzheimers clinical research studies
i was on a special committee for the texas health department for recommendations for primary care physicians on how to do an evaluation for memory loss
i did a presentation at texas state for its graduate dementia programs alzheimers conference

i have decided i will continue to do these as long as i am cognitively able to do them
telling my story from these three perspectives

a family member whose parents and brother had the disease
a physician who treated the disease
now as a patient with the diagnosis
and as a study subject in clinical trials

thats one of my missions for the future is to spread the word about this awful disease

XXXX

08-05-2011
THE TALK
one of the things i wanted to do when i was diagnosed with
mild cognitive impairment amnesic type was to eventually
start giving talks on alzheimers disease using my story as
a vehicle to educate people about alzheimers disease

i wanted to wait until i was stable on my medications and
was through with most of my testing that i needed to do

well now thats all done

i have the unique opportunity of being a family physician who
has treated people with the disease, of being a family member
of family that had or have the disease and now someone who
probably has the disease
(100 % diagnosis only at brain autopsy)

because of this i feel like a have a unique perspective on this
disease as i am and have seen it from all sides
none of it is enjoyable

i gave my first presentation last week
i hope to do more as i have a window of time that i will be able
to do this and communicate my story

i did an one hour skype presentation to a small group in
louisiana
i did a 15 minute talk and then allowed the group to ask me
questions about alzheimers
i also threw in some discussion of organic living, green living,
rainwater harvesting and solar but the majority of the time
was spent talking about alzheimers disease
thanks to khh for setting this up

(the big A may be replacing the big C as the disease people
are worrying about
am i going to get it or my parents or my kids)

i look forward to doing more of these
as i told my story and what happened to me
this allowed me to inform them about alzheimers disease-
whats coming in the future, whats happening now, how to get
diagnosed, and where to get help

if you or someone you know would like me to give my talk
and answer questions i would be glad to do that
just contact me via facebook or this blog or email

XXXX

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