Monday, December 20, 2010

A Letter to the President: Sign the National Alzheimer’s Project Act

For the first time, I wrote a letter to the President of the United States! I asked him to sign the National Alzheimer’s Project Act (NAPA). It’s not that I never had anything to say to the President before, but no issue ever motivated me enough to actually write. Besides, you always know he isn’t going to read his letters anyway. I’m sure he isn’t too concerned about one person’s opinion, but if he gets a million emails sent to him, they will be a nudge in the right direction.

This Act has been in the works since 2007. During our legislative visits at the 2010 Alzheimer’s Advocacy Forum my granddaughter, my friend Cindy, and I talked to our representatives and senators to ask them to support NAPA. After 1,000 advocate meetings, 50,000 emails, 10,000 phone calls, and 110,000 signatures gathered during the Alzheimer’s Breakthrough Ride, both the Senate and House of Representatives passed the bill establishing NAPA.

NAPA will be a coordinated effort to use our resources on research for a cure and effective treatment, provide appropriate home, clinical, and institutional care for the 5.3 million persons with Alzheimer’s, improve community based programs, and support for families. In my opinion, NAPA is the most important legislative act for families who are struggling with an Alzheimer’s diagnosis.

After a series of tests, a doctor told my forty-nine-year-old husband that he had early-onset dementia.

“What would cause that?” I asked.

"Most likely Alzheimer’s,” the doctor said.

We didn’t know much about Alzheimer’s at the time, but I can tell you from personal experience that it is a devastating diagnosis. There are no words to describe the heartbreak of knowing your loved one has an incurable brain disease that will rob him of his abilities, personality, memories, and eventually his life.

By 2050, without a cure for Alzheimer’s, an estimated 16 million Americans can hear the same bleak diagnosis. Age is the No. 1 risk factor for Alzheimer’s and as the Baby Boomers age, more people will be at risk than ever. NAPA does not guarantee a cure, but it is definitely a step in the right direction. Alzheimer’s has never received the attention of diseases like AIDS or cancer. What good will it do to cure other diseases to find ourselves at a 50% chance of developing Alzheimer’s once we reach 85 years old? I don’t know about you, but I hope to be able to recognize my children, grandchildren, and great-grandchildren as long as I live.

Jim died in 2005 at fifty-nine years old after ten years with corticobasal degeneration, an Alzheimer’s type of dementia. Today would have been our 41st wedding anniversary had dementia not cut his life short.

I wrote my letter to the President because of Jim, and I’m sure  your loved ones are worth the few minutes it takes to go to www.alz.org and send a letter to the President in support of NAPA.

Copyright © December 2010, L. S. Fisher
http://earlyonset.blogspot.com
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