Saturday, March 28, 2009

Purple Passion for Alzheimer’s at the Public Policy Forum

When Jim and I became engaged April 5, 1969, our colors were purple and yellow. Jim would tell me, “I love you with a purple passion,” and then he would add, “with a yellow racing stripe.” You have to realize that in 1969 racing stripes were really cool.

Purple is the signature color of the Alzheimer’s Association. I really don’t know why they chose purple, but the color can still be associated with passion.

My sister, Roberta, and I arrived in Washington DC a few days before the Alzheimer’s Association Public Policy Forum. We visited historic landmarks and attended services in the National Cathedral on Sunday morning. Cherry blossoms verged on blooming, and we couldn’t have asked for better weather.

Through past experience, I’ve found the most essential item for DC is comfortable shoes. Even with comfortable shoes, we managed to return each night with weary legs and aching feet. Everything in Washington DC is bigger than life—including the distance between buildings and monuments.

We joined more than five hundred advocates to bring passion to Capitol Hill. Twenty-four delegates from Missouri experienced the Alzheimer’s Association’s 21st Annual Forum. Four advocates in our group have been diagnosed with early or younger onset Alzheimer’s.

Mike Splaine, Alzheimer’s Association Advocacy guru, said because the Alzheimer’s crisis is gradual it is in danger of being overlooked. He said we needed passion and intensity to bring about change and take steps to make Alzheimer’s disease a national priority.

Maria Shriver, first lady of California, wasn’t satisfied to merely attend the forum—she wanted to experience the forum. She made her first appearance at the candlelight vigil Monday evening. After speakers passionately talked about their journeys, we lit our candles of remembrance and hope for a future without Alzheimer’s.

On Tuesday, Maria introduced a preview of an upcoming four-part HBO special about Alzheimer’s. The heartbreaking message ended with the word HOPELESS truncated to read HOPE.

Our group of 500 stormed Capitol Hill with purple sashes making us stand out from the crowd. We visited our respective senators and representatives to speak with one voice.

Our legislative “ask” was streamlined this year to three issues. Research was at the top of the list. We asked for an additional $250 million this year and another $250 million in 2010 to reach our illusive $1 billion goal. The annual total cost of Alzheimer’s is $148 billion. If $1 billion in research funding could reduce the annual cost by a small percentage it would be a wise investment.

Secondly, we asked for an Alzheimer’s Solutions Project Office. This office would be charged with leading a national effort to reengineer dementia care delivery.

We also asked for a phase out of the social security two-year waiting period for Medicare. Expensive diagnostic tests are sometimes delayed due to the waiting period. Early drug intervention may also be postponed past the time when it does the most good.

The “2009 Alzheimer’s Disease Facts and Figures” highlights the prevalence of the disease. Alzheimer’s is a family disease, and every 70 seconds another family begins this journey. Seventy percent of the 5.3 million Americans with Alzheimer’s are cared for by 9.9 million unpaid caregivers.

Alzheimer’s Statistics can be alarming, but personal stories are the heart beat behind the numbers. When a legislator looks into a caregiver’s sad eyes or into the confused gaze of a person with dementia, we become more than a number. We humanize the emotional and physical drain of a degenerative and fatal brain disease.

Jim was in a nursing home when I made my first trip to Washington DC. His dementia often made me feel helpless and hopeless. The trips helped rejuvenate my spirit and gave me purpose. I am friends with many amazing people that advocacy brought into my life. Being an advocate is personally rewarding and I believe it is important for those with Alzheimer’s and their families.

This was my ninth trip to Washington DC as an advocate. Jim died in 2005, but I continue to make the trip in his memory. Each year, when I prepare for the Public Policy Forum, I take my purple passion and pack comfortable shoes.


Debbie said...

I am so glad that there are people like you out there with a "PURPLE" passion.

Sounds like you had a wonderful trip that was very productive for the Alzheimer's Association. Thank you for all of your hard work.

Jaz said...

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