Sunday, April 10, 2016

A Sea of Purple

Kathy Siggins, Linda Fisher, Sarah Harris  
I spent most of last week at the Alzheimer’s Advocacy Forum where every meeting and activity was virtually a sea of purple. I was joined by 1,199 other determined, and purple clad, advocates at our nation’s capital to  continue the fight for Alzheimer’s.

The forum runs like a well oiled machine and with this being my sixteenth forum, I knew what to expect. Mostly, I know to expect the unexpected: the moments that catch me off-guard opening up a forgotten memory; the personal stories; the hopes and fears of new advocates; the complete charm of a lovely woman in the early stages of the disease.

Each year, I meet new people and get to spend time with friends from other parts of the country that I see annually at the forum. The magical days of the forum are three musketeer time. My friends Sarah Harris, Kathy Siggins, and I spend as much time together as possible. It almost seems that we finish conversations we started the year before. As Sarah said, “In one way it doesn’t seem like a year, but in another way it seems much longer.”

Kathy and I did the tourist attractions Saturday afternoon and Sunday until aching feet drove us

indoors to relax and wait for Sarah’s arrival. Sarah was at a disadvantage this year with her broken ankle, but she managed to keep up with a handy-dandy scooter.

Sarah and I are ambassadors so we started a little early with the ambassador lunch and program. She and I discovered parts of the hotel we never knew existed. We made our way around on service elevators that opened into hallways leading to a bevy of unmarked doors. We soon learned to just keep opening them until we found the meeting room for the next session.

The forum officially began with the roll call of the states. This year those of us presenting our state’s accomplishments entered the room with much fanfare, following a band and waving our state flags.

The National Alzheimer’s dinner was special for Missouri Advocates this year for two reasons. First, Senator Blunt received a humanitarian award for advancing research funding for Alzheimer’s. He made us proud with his impassioned support during his acceptance speech.

The second reason for Missouri Advocates to celebrate was when our own Pat Etienne, along with the Early-Stage Advisory Group, received the Advocate of the Year Award.

Of course, the highlight of the conference is always Capitol Hill day. Twelve hundred determined people wearing purple sashes draw a lot of attention. This year, we brought three issues to the attention of our legislators: (1) a request for a $400 million increase in Alzheimer’s research, (2) co-sponsors for the HOPE for Alzheimer’s Act estimated to save an amazing $692 million over the next ten years and (3) the Palliative Care and Hospice Education and Training Act (PCHETA).

I found out line dancing did not prepare me for the amount of walking required to go from the bus up the hill, back and forth from the Senate offices, where we visited Senators Blunt and McCaskill, to the other side of the Capitol to visit Congresswoman Hartzler’s office, and back again for the Senate Hearing.

I was reminded of the Princess and the Pea when I discovered a tiny ridge inside my most comfortable boots after putting several miles on my feet. Just when I thought I couldn’t take another step—it was time to go back to the bus stop.

Alzheimer’s is a scary disease, and honestly, I think that most legislators “get it.” They know we have to get a handle on this expensive disease or it’s going to bankrupt Medicaid and Medicare when we boomers get a few more years on us. I don’t want to spend my declining years not knowing my children and grandchildren.

On the elevator at the Marriott Wardman Park, a lady looked at my purple “Alzheimer’s Association” sash and said, “Your group is so impressive. You are enthusiastic and really make a statement. Thank you for being here.”

I’m glad I could be there, but I’ll be even happier when it is no longer necessary!

Copyright © April 2016 by L.S. Fisher

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