Each year when I visit Washington,
D.C., to advocate for Alzheimer’s funding, I take my current blog book. This
year I left copies of Garden of Hope
with legislators. I leave these books with the thought that someone might read
it—often a legislative aide—but seldom believe that the representative or
senator will read the book.
I am an Alzheimer’s Ambassador for
my representative, but due to a scheduling snafu, I did not get to meet
personally with Congresswoman Vicky Hartzler. When I arrived at the scheduled time
on my sheet, the Congresswoman was already gone. Her aide assured me that Vicky
had wanted to meet with me and had waited several minutes past the time on her
calendar. So I left the book and my apologies for the misunderstanding.
In early August, I was pleasantly
surprised to receive a handwritten note from Congresswoman Hartzler thanking me
for leaving her a copy of Garden of Hope.
She wrote, “What a wonderful collection of insights into this tragic disease
plus messages of hope in our fight to eradicate this debilitating illness.” She
ended her note with “Thank you for leading the charge to bring awareness, spur
action, and inspire hope.”
Okay, I’ll admit this was a first! I
had never received a handwritten note from my representative. Then, another
first…A few weeks ago I received a called from a “202” area code—Washington,
D.C. When I answered the call, I was speaking to Adreine from Congresswoman
Hartzler’s office. Adreine wanted to set up an appointment for the
Congresswoman and me to meet for coffee on October 9. We agreed that I would
meet her in the lobby of historic Bothwell Hotel and we would have coffee in
the hotel’s restaurant, Ivory Grille.
On Thursday afternoon I arrived at
Bothwell Hotel to find Vicky sitting in the lobby. We shook hands and she asked
if I’d like to go somewhere else since the restaurant was closed for the
afternoon. We decided to have our meeting in the lobby instead.
She talked about her morning at
State Fair Community College where she spoke at a teen leadership summit. After
our visit she was going to visit the Boys and Girls Club.
For the next forty-five minutes, we
talked about Alzheimer’s disease and its impact on families. I had brought fact
sheets that served to remind us how many Americans know the heartbreak of Alzheimer’s.
There it was in purple, black, and white:
·
More than five million Americans have Alzheimer’s
·
Every 67 seconds someone in the U.S. develops
Alzheimer’s
·
Alzheimer’s is the sixth leading cause of death
in the United States
·
Fifteen million Americans provide unpaid care
for a person with Alzheimer’s
·
In 2014 the total cost of Alzheimer’s will be
$214 billion—$150 billion to Medicare and Medicaid
·
0.25% of the cost of Alzheimer’s is being spent
on research
·
Approximately 500,000 people die each year
because they have Alzheimer’s
We talked of the frustration of how
a mere 1.7% of the NIH’s budget goes toward Alzheimer’s research. I thanked the
Congresswoman for being a co-sponsor of the Alzheimer’s Accountability
Act and for her unwavering support
for Alzheimer’s research.
We shared our personal experiences.
Talked of nursing homes, caregiving, and recognizing that a person with
Alzheimer’s is a person first. Someone to love, and to find joy in his or her moments
of clarity or humor.
We ended on a high note. I gave her
a handout of what we are doing in Sedalia: Photos of our successful Walk to End
Alzheimer’s and information about our local support group facilitated by Betty
Hopkins.
Our meeting began with a handshake
and ended with a hug. The Congresswoman and I are united in this battle against
Alzheimer’s and for a world without it.
Copyright © October 2014 by L.S.
Fisher
http://earlyonset.blogspot.com
Watch
the video of Facts and Figures: https://www.youtube.com/watch?v=waeuks1-3Z4
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