Dottie Carson took the microphone, looked out over the crowd and spoke boldly of her struggle dealing with early onset Alzheimer’s disease at 57.
“I have plaque on my brain, and I have some of the traits and symptoms that make it a problem for me to work, so I’m no longer working,” said Carson of Lake Worth. “I haven’t settled into that relaxation which comes from retirement, because this is not retirement. This is disability.”
A crowd of about 70 residents from Broward and Palm Beach counties gathered last week at Park Summit, a senior living community in Coral Springs, for coffee and serious conversation about the ravages of Alzheimer’s disease with U.S. Rep. Ted Deutch (Fla.-21).
The advocates, caregivers and those afflicted met with Deutch, who has been a strong supporter of Alzheimer’s research and whose northwest Broward and southwest Palm Beach district is home to more senior citizens than almost any other in the state.
“I must speak up now. In a year I might not be able to, so I need to make sure that I get out what I want to say,” Carson said to strong applause. “I encourage you, Congressman, to push for more clinical trials and to do what you can to help us.”
Congressman Deutch, visibly moved, said Carson’s story is a powerful reminder of what needs to be done in Washington. He said he is committed to returning to Congress and working for increased funding.
“There are no better advocates than the five million Americans with Alzheimer’s and their families, who have provided 18 million unpaid hours of care,” Deutch said. “I appreciate your story, and your advocating not just for greater awareness of Alzheimer’s but for greater research dollars.”
Alzheimer’s disease is the sixth leading cause of death in the United States and is the only cause of death in the top 10 that doesn’t have a preventative, treatment or cure. More than 500,000 Floridians have Alzheimer’s disease.
“This is the defining public health concern of our time,” said Ann May, CEO of the Southeast Florida Chapter of the Alzheimer’s Association, adding that 100,000 of those cases are in Broward and Palm Beach counties.
“We need everybody in the community to be aware, whether they have been immediately affected by this disease or not,” she said. “The numbers are increasing, and at some point in their lives — if not now, later — they will be affected. And more women are affected, whether from the disease, or as a caretaker.”
The meeting’s issues ranged from the high cost of Alzheimer’s medications to insurance debacles and curious cures found on the Internet.
Carson urged those with family members with Alzheimer’s to find out if they are carrying the gene. She detailed her participation in a University of Miami study that was a registrar of her family.
“I have nine brothers and sisters, 27 nieces and nephews, and 32 grand-nieces and nephews. We have the Alzheimer’s gene on both sides of the family, which means that half of those who reach 85 will die of the disease. This is unacceptable,” she told Deutch. “And so before I lose the ability to speak, before I lose the ability to show up at a meeting and stay on task, I hope you will do all you can to help my family and people across the globe.”
Deutch said Congress has set an ambitious goal of preventing or treating Alzheimer’s by 2025. “The only way that happens is if there is real commitment to research,” he said. “If not, that 5 million Alzheimer population will nearly triple over the coming years.”
Jennifer Braisted, advocacy coordinator for the Alzheimer’s Association, said Deutch has been a champion for the disease, shepherding increases in NIH funding and creating legislation for caregivers.
“With our aging baby boomer population, this is the public health crisis of our time,” Braisted said. “Unfortunately, many members of Congress just don’t connect with it. But Congressman Deutch has been outstanding, and we’re fortunate to have him.”
The Alzheimer’s Association supports the five local Walks to End Alzheimer’s: Boca Raton Walk at the Mizner Park Amphitheater, Sept. 27; Treasure Coast Walk, Oct. 3; West Palm Beach Walk, Oct. 10; Broward Walk at Hollywood North Beach Park, Oct. 24; and Miami- Dade Walk, Nov. 7. The walks are annual events that raise community awareness and money for research.
To learn more about the Southeast Florida Chapter of the Alzheimer’s Association, call the hotline at 800-272-3900 or visit Alz.org/seflorida.
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