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
Watch the video of Facts and Figures: https://www.youtube.com/watch?v=waeuks1-3Z4