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My Experience, Our Voice

Posted Mar 13 2010 8:21pm
Once again I made my annual pilgrimage to Washington, DC, and joined other advocates to bring our message to Capitol Hill. This year my friend, Cindy, and my granddaughter went with me. We went a few days early to visit the magnificent museums and monuments scattered throughout our capitol city.

Of all the sights in DC, the Vietnam Memorial touches me the most. About twenty years ago, Jim and I went to Washington, DC, on a business trip. Jim had seen the memorial on TV, and being a Vietnam veteran, it was at the top of his “must see” list. We walked hand-in-hand past the memorial that first time, tears streaming down our faces, overwhelmed at the sight of the Wall. The simple, yet majestic, glossy, black granite wall is inscribed with 58,261 names, each representing a life lost.

For the past ten years, I’ve made the trip to Washington, DC, without Jim, but I feel his presence with me, especially when I visit the Wall. Each time I touch its surface, the tears flow for all those lives lost, and for others destroyed by Vietnam—for the wounded in spirit as well as in body.

Vietnam was a burden that rested heavy on Jim’s soul. He struggled with depression verging on despair. Still, he found solace and healing through his musical talent. The most unfortunate symptom of Jim’s dementia was when his smooth singing voice was silenced. I became an Alzheimer’s advocate and his voice by proxy.

A record number of advocates attended the Alzheimer’s Action Summit this year. An alarming number of those with the disease have younger onset. It may be that younger people are more motivated to take on the insurmountable challenges of a disease that many of them never imagined would affect them.

Each of us comes to Washington, DC, from different backgrounds with different stories, or experiences. We came with "One Voice" and a focused approach to bring Alzheimer’s out of the shadows and into the light—hopefully, the spotlight. While mortality from stroke, HIV, heart disease, prostate and breast cancer has decreased in the period of time from 2000-2006, Alzheimer’s deaths have increased by 46.1%. What is the difference? We have focused on those diseases and funded research to find effective treatments.

Alzheimer’s funding in 2009 was $469 million, plus $77 million from the American Recovery and Reinvestment Act. This is far short of the billions spent each year on other major diseases. Without the investment in research, we will never have the payout of success.

Each of us can make a difference by becoming an advocate. If you weren’t able to make it to the Summit, you can still add your voice to the more than 600 advocates who stormed Capitol Hill with the Alzheimer’s message. Pick up the phone and call, or email your legislators, to ask them to support and co-sponsor
· The Alzheimer’s Breakthrough Act (S. 1492, H.R. 3286). Alzheimer’s research would become a priority of the National Institutes of Aging and funding established at $2 billion. It would also include a study of the unique problems facing those with younger-onset dementia.

· Alzheimer’s Detection, Diagnosis, Care, and Planning Act will help expedite diagnosis and bundle services to ensure care planning to maintain quality of life. It is estimated that currently less than half of the people with dementia have been diagnosed.

· The National Alzheimer’s Project Act (S. 3036, H.R. 4689) would create a National Alzheimer’s Disease Plan. Currently 5.3 million Americans have Alzheimer’s and without a cure as many as 16 million will have the disease by mid-century.

Alzheimer’s is an expensive disease. Medicare costs are six times higher for a person with Alzheimer’s, Medicaid is a staggering nine times higher, and private insurance costs are 26% more. The monetary cost doesn’t even come close to the emotional toll this disease takes on the entire family when a beloved relative develops dementia. Share your experiences so that our voices will be heard.

copyright (c) 2010 L. S. Fisher
http://earlyonset.blogspot.com
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