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It really hasn't changed all that much. Just the clothes
and the meds are
different. Thank God for the Meds! I recently traveled
to Washington DC to
save our Alzheimer's research dollars, but I returned with
so much more.
My trip to DC was great, though time will tell how effective
it was
convincing Congress to continue funding Alzheimer's research.
I was
accompanied on the trip by my care partner, Marianne Gardner
and my daughter
Rachel. We flew out early so that we could see a few sights
in the DC Mall.
There is an old legend in our family about Great Grandpa
Jackson riding with
Custer in the Civil War. He was a flag bearer, and one
of the few who
survived the war. So I searched the Smithsonian for a flag
on display that
matched our family story. I found it, a flag that matched
our story. Whether
the story is true I don't know, but belief, and the journey
is the issue,
not necessarily the result. That is so true with having
Alzheimer's too. It
is the journey, not the result that is important.
As a representative of the Alzheimer's Association Persons
with Dementia
Advisory Group on Early Stage Issues, (whew that is long)
we were housed in
the Grand Hyatt Hotel, a beautiful place to be in DC. They
fed us well and
gave us great opportunity to visit with the other 300 or
so advocates from
all over the nation. It was exhilarating for me to see
so many people
involved in this political forum. I wish everyone involved
in Alzheimer's
advocacy in Oregon could have been with me. We sat through
many training
sessions on issues to raise with members of Congress, how
to address them,
how to make appointments with them and how to make an impact
about the need
for Alzheimer's research dollars to be increased and not
cut. I know that
our Oregon Congressional Delegation will vote for us on
these issues.
Senator Wyden made an effort to meet with us and hear our
personal stories.
Congresswoman Hooley's staff took great pains to be exceptionally
helpful.
But I was surprised and pleased to know first hand that
all of our
Congressional representatives worked to make us welcome;
and hear our story.
They were all happy to talk to us about the issues surrounding
Alzheimer's
disease and to meet me, as a person with dementia advocating
for myself.
This trip for me became not only a trip for advocating
Alzheimer's research,
but also became a time of personal discovery. As we were
sitting down to
dinner at our first formal meeting, two young women came
over and sat with
us. They were from Utah and Idaho, sisters with a mission.
Their mother had
been diagnosed with early onset Alzheimer's disease (EOAD)
this last fall.
In their search to find out information about the disease
they heard a story
about another family with EOAD that they were related to.
That family was
mine. They were related to me through my Great Grandmothers
family.
As our meetings progressed for the three days of training,
more and more
persons with dementia arrived. I was finding myself talking
to people my own
age, some younger, some older, but people with EOAD. We
compared notes on
drugs, symptoms and emotions dealing with the disease.
Many of them told me
that they came just to hear me speak on early onset Alzheimer's
issues. They
were thrilled that we were being acknowledged and listened
too. The
conference hosts found another room for us to meet in and
have an impromptu
break out committee on EOAD issues and then offered us
a reception to be
able to chat together. The night before going to
the Hill we gathered in
front of the Washington Monument and on the edge of the
reflecting pool
listening to speakers encourage us to do well. I did get
to meet and shake
hands with David Hyde Pierce from the television show Frasier,
he is an
advocate for us too. It is a marvelous thing to see folks
from all over the
nation gathering to change the face of Alzheimer's disease.
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