Daisy Duarte

Advocating for Alzheimers
Daisy's Story:

I lost my first mom five years ago.Alzheimer's is my second mom.

When my mom got bad it was a matter of my mom or my dream, and my mom comes first for anything. At the time I owned Da Cubby Hole Sports Bar on South Campbell but closed it to care for my mom. 

In the process of learning more I not only took part in a PBS Documentary to gain support I also made a gut-wrenching decision: to enroll in the Dominantly Inherited Alzheimer Network, an observational study spearheaded by the Washington University School of Medicine, and get tested to find out if I carried one of the genes.

Every day as I feed, bathe, and change her, I am not just watching my hero disappear, I am witnessing my own future because I have tested positive for the early-onset familial Alzheimer’s gene. The results came in while taking part of a film for PBS

Since the documentary was filmed in Springfield in 2015, my mother has declined significantly so the woman people will see in it is not the same woman today. She does not eat solid food. I have to blend all her food. She is in diapers all the time. She is homebound. I don’t take her out anymore.

When I tested positive for the early-onset familial Alzheimer’s gene that my mother and so many others in my family have. I sat quietly as a genetic counselor explained that the results meant that I would get Alzheimer’s disease by my 65th birthday.

I have taken part in a clinical trial receiving an injection every month. It’s a double blind study so neither I or the nurse giving me the injection know if I am receiving the treatment or the placebo and no one knows if the treatment will help ward off the disease. Then once a year I go to St. Louis for a battery of tests including a spinal tap and CT scans.

I don’t know if the medicine will help me, even if it doesn’t I hope it will help someone else. And in the meantime, I continue to fight for awareness, lobbying congressional representatives in Washington, D.C. to increase funding for Alzheimer’s disease and acts as an advocate at any opportunity.

Like many in the Latino community, I didn’t know much about Alzheimer’s before my mother was diagnosed with the progressive brain disease two years ago at the age of 57. Now I live with the knowledge that my memories have a limited shelf life, set to expire in 25 years.
I’ve decided to use this time to fight for a cure as an advocate, a caregiver and as one of the few Latina participants in an Alzheimer’s clinical trial at the Washington University School of Medicine in St. Louis.

Five million Americans live with Alzheimer’s disease, a number that is expected to triple by 2050. My mother is one of the 100,000 Missourians living with the disease. And the number of Latinos is expected grow 600 percent to 1.5 million by 2050. But these numbers don’t adequately capture the disease’s impact on my family, the Latino community or the nation.

Financially, it’s devastating. The direct and indirect cost of Alzheimer’s disease is more than $225 billion annually. If we continue on our current course, the total cost of the disease is likely to exceed $1 trillion by 2050 — more than cancer and heart disease.

Personally, I was forced to close a successful business to provide the full time care my mom needs. Now any money I make as an hourly worker, along with her meager pension, go to Alzheimer’s related costs. It’s certainly not something we planned for financially or emotionally.

I know that significant federal research investments in HIV, stroke and heart disease have saved lives and reduced overall health care costs. But a similar investment has not been made in Alzheimer’s and we’re paying for it in the lives of our loved ones. This fact is made clear in published studies from the National Center for Health Statistics, which reports that from 2000 to 2013, deaths attributed to HIV declined by 52 percent, stroke by 23 percent and heart disease by 14 percent, while deaths attributed to Alzheimer’s disease increased by 71 percent.

More than 1.8 million Latino family members care for an individual living with Alzheimer’s or dementia. The majority are daughters like me, providing high-stress, around-the-clock care for loved ones who often don’t remember who we are and too often cannot dress, feed or bathe themselves. It’s a tough job that we take on with love, a sense of duty and honor, but it’s a job that we need help with. We need a cure.

Thanks in large measure to the leadership of Sen. Roy Blunt of Missouri, the Senate recommended that federal funding for Alzheimer’s research be increased by $350 million in fiscal 2016. Legislation in the House recommends $300 million.

At a time of partisan battles over many issues, I’m pleased there is bipartisan support for significantly increasing Alzheimer’s research funding. As Congress juggles a range of priorities in the current funding debate, it is critical that lawmakers support making Alzheimer’s funding a national priority. It’s a smart and necessary investment in the future of our economy, our health care system and the well-being of millions of families. Memories are too important to have a shelf life.

A new prime time documentary “Alzheimer’s: Every Minute Counts” aired nationally at 9 p.m. CT Wednesday, Jan. 25/17 on PBS stations, including Ozarks Public Television, and features Springfield resident Daisy Duarte who is caring for her mother with early onset Alzheimer’s. The film highlights the mounting emotional and financial costs associated with caring for those afflicted by the disease. 

You can watch a trailer for the film here: (Sign Up for notice of next airing) http://www.pbs.org/tpt/alzheimers-every-minute-counts/home/

From watching the documentary We at Women of Worth Magazine are both shocked and concerned that this is the only of the top 4 diseases where NO ONE is beating it due to the research being done. Funds are being quickly used up to care for the masses being diagnosed daily with little left for the kind of research needed to make any real progress.

YOUR Help is NEEDED NOW! We have provided links to sites around the world where YOU can FIND OUT MORE OR Donate to Help Take Action Against Alzheimers

Daisy Duarte, a patient and caregiver advocate with the Latinos Against Alzheimer’s Network, lives in Springfield, Mo. Her family’s story appeared recently on the following media sites.



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