Sunday, May 22, 2011

Alzheimer’s Action Summit

For the eleventh time, I made the trip to Washington DC to add my voice to other Alzheimer’s advocates. For the second time my granddaughter went with me.

We were at the airport Saturday morning for our 6:30 AM flight and arrived in DC mid-morning. While we waited for our room to get ready, we rode the Old Town Trolley down to the mall and toured the Museum of Natural History. Sunday, we visited the national zoo to admire the pandas, elephants, apes, and reptiles. Considering the forecast, the weather turned out to be fantastic.

Sunday evening the Summit began with the roll call of the states and a representative from each state told about their accomplishments in the past year. After the roll call, we learned a storm was coming in and the candlelight rally would be held at the hotel.

During the rally, several people spoke, but one that stood out the most for me was twenty-two-year-old Keri Roaten, caregiver for the grandmother that raised her. Just like caregivers twice her age, or even four times her age, Keri’s life has been put on hold. While each caregiver sacrifices many other events in life, it seemed particularly poignant to me that Keri missed activities that most teenagers take for granted. She missed her prom and her college dreams were put on hold. We held our candles high in remembrance and tribute for Keri’s grandmother and for loved ones living with the disease and for those whose journeys have ended.

The first time I lit a candle at the vigil, I had just placed Jim in a nursing home. I was plagued with doubts, fears, and anxiety. Five years later in 2005, I lit my candle only a few short weeks after our journey ended. This year, my heart ached and my eyes burned at the raw emotion of those were at an emotional crossroads.

Monday was a full day that  began at 7 AM and ended at 10 PM. We heard Newt Gingrich, a longtime supporter, share his concern about the economic future of this country when, without effective treatment or a cure, Alzheimer’s will cost the American Government $20 trillion between now and 2050. Gingrich is optimistic that the scientific community will have a breakthrough if we invest in Alzheimer’s research. During lunch, Melody Barnes, domestic policy advisor to the President, spoke of President Obama’s serious attention to the fight against Alzheimer’s. She considers the National Alzheimer’s Project Act a step to further research and awareness.

The Summit culminates with legislative visits. We met with the health aides for our senators and our representative to discuss our legislative issues. Senator Blunt dropped by for a photo op.

This year we had a two-fold mission: the Alzheimer’s Breakthrough Act and the HOPE for Alzheimer’s Act. We used a new approach on the Alzheimer’s Breakthrough Act. Rather than asking for a dollar amount for research, we asked for research funding to be driven by what the scientific community deemed necessary to make significant progress. The HOPE for Alzheimer’s Act covers three areas: (1) Early and Accurate Diagnosis, (2) Care Planning that ensures caregivers know all available resources, and (3) Medical Record Documentation.

My granddaughter and I were tired by the time we headed to the airport for our trip home. I hope that someday we can make the trip to Washington, DC, just to sightsee. My wish is for the day Alzheimer’s is one of those diseases that people “used to have” but has been wiped from the face of the earth. Until then, I’ll pack my bags once a year to become a VOICE for those with Alzheimer’s and their caregivers.

Copyright © May 2021 by L. S. Fisher
http://earlyonset.blogspot.com/
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