JOAN'S BLOG - FRIDAY, SEPTEMBER 19,2008 - Tony's Story

Sunday is World Alzheimer's Day - a day for everyone to do their part to raise awareness about Alzheimer's Disease. I will write more extensively on this for the weekend blog, but for today, I am printing the latest chapter in Tony's story. Those of you who have been reading this website for awhile, are aware of our member, Tony Pesare, whose 43 year-old beloved wife Tracy, lost her battle with EOAD in August, after only 3 years. Tony has been a tireless advocate for awareness, research, programs, and resources for those younger victims of AD, who are ineligible for most Alzheimer services.

Orange City man talks about life and death — World Alzheimer's Day is Sept. 21

By Jen Horton
BEACON STAFF WRITER
posted Sep 18, 2008 - 10:28:00am

In the 31 counties covered by the Central Florida Alzheimer's Association, Volusia County has the highest number of people living with the disease, more than 17,000.
Ten percent of those Alzheimer's cases are early-onset Alzheimer's; 10 percent of people who die from the disease are under the age of 65.
Tracy Pasare was 43 years old, with three sons and a loving husband, when she died of Alzheimer's in August. She was diagnosed only three years ago.
Her husband, Anthony Pasare, has become an advocate, seeking to spread awareness about Alzheimer's and the very real consequences it can have for young, working families. Early-onset, the type of Alzheimer's that took his wife, progresses much faster than other forms of the disease.
"First, Alzheimer's is a terminal disease, right now, that has no cure," Pasare said. "And, second, Alzheimer's is not just an old person's disease."
Unlike cases of cancer and AIDS, where new cases are decreasing and successful treatment is increasing, the number of Alzheimer's cases is spiking.
Not only is it not an old person's disease, it is going to cause a nationwide funding crisis in the near future, Pasare predicted. Medicare and Medicaid — as well as private insurance and caregivers' incomes — are all going to be hit hard
"Right now, Alzheimer's and dementias cost more than $148 billion annually to treat," Pesare said. "By 2030, the cases could quadruple, and the cost could exceed $600 billion. The cost is going to cripple the country."
Pasare said only two out of 10 applications for federal grants for Alzheimer's research are funded. He wants that to change.
Sharon Melton, director of programming for the Central Florida Alzheimer's Association, confirmed all of Pasare's information.
"This is an incurable, progressive disease," she said. "Every 71 seconds, someone is diagnosed with Alzheimer's."
Melton said early-onset progresses more rapidly than regular Alzheimer's. Life expectancy for those diagnosed with early-onset Alzheimer's is four to seven years; for those with regular Alzheimer's — diagnosed after age 65 — life expectancy is eight to 20 years.
The lack of funding, Melton said, could have something to do with the misconception that the disease affects only the elderly.
"It may be how our society considers seniors," Melton said. "Which is unfortunate."
Pasare went to Washington with representatives from the National Alzheimer's Association.
He said one of the speakers brought the issue to light very dramatically.
"He asked everyone who was a cancer survivor to raise their hands," Pasare recalled. "Hands went up — prostate cancer, breast cancer, colon cancer."
Pasare said the man then asked how many Alzheimer's survivors were in the audience.
"Not one hand went up," he said. "You could hear a pin drop."
To raise awareness, World Alzheimer's Day will be Sept. 21. Information on the Alzheimer's Association Web site has more information about the disease, treatments and support groups, and it gives dates, locations and opportunities for sponsorship for memory walks and other awareness and fundraising functions.
For more information, visit the Central and North Florida Chapter of the Alzheimer's Association at www.alzflorida.org, or visit the National Alzheimer's Association at www.alz.org.
— jen@beacononlinenews.com

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