By Angelina Gamba
Dr. Zahydie L. Burgos Ribot’s husband, Francisco Rios aka Pako, was diagnosed with early onset Alzheimer’s just two years ago at the age of 46.
“When he was first diagnosed, that first year we told no one,” Ribot said. “It was very much on a need-to-know basis. We were still grappling with the disease and what this meant. I remember that prioritizing our mental health was key. So, we took one year to process, grieve, cry and let the magnitude of the disease kind of weigh us down.”
Ribot and her husband then decided to make an Instagram account to document their experience and help others. At the same time, she reached out to the Florida chapters of the Alzheimer’s Association to learn more about support groups and resources in her area. After being put into contact with Amanda Harris and learning more about the advocacy team and the work they do, she was immediately interested.
“When she shared what they were doing, I was fully on board,” Ribot shared. “We’re Hispanic, and we know that Alzheimer’s disease is impacting the Hispanic population at a higher rate than our peers. So that, combined with the fact that I am a clinician, made us feel like we had a very unique perspective of this disease. We wanted to help others and serve as a resource for others.”
Ribot has been volunteering with the Alzheimer’s Association for almost a year now. She has fundraised with Walk to End Alzheimer’s Orlando and collaborated with Association’s Florida communications team to raise more awareness about Alzheimer’s in the Orlando Sentinel, Spectrum News 13 and more. She has also been a keynote speaker at different events including the Rally in Tally Purple Light Ceremony and has attended both Rally in Tally and the AIM Advocacy Forum this year to advocate to state and national legislators.
Although she sometimes volunteers alone, it’s the moments that she’s able to advocate alongside Rios that are the most meaningful for her. He attended the AIM Advocacy Forum in Washington D.C. with Ribot and was able to passionately advocate for reform despite having some communication problems due to Alzheimer’s.
“Even when he’s losing his communication skills, he’s still speaking up, he’s still fighting, and he’s still wanting to serve as an example and increase awareness for everybody but especially for Latino and Hispanic communities. Doing it as an advocate and as a caregiver and a wife of someone who is fighting this disease is one thing. But when you get to do it with the person that’s actually going through it, and he’s not backing down, and he’s not being intimidated by this disease and just literally fighting it head on. To me, it was just so meaningful because my husband is a man of very few words,” Ribot said.
She emphasized that through advocating and volunteering, she was able to find meaning and purpose.
“I’m doing all of this and we’re doing all of this so that when the inevitable happens, which we know how this disease ends, I want to make sure and I want to have that peace of mind that when I look back, I can say that I did everything that was within my power to not only give dignity to my husband in the process but also use our voice to try to effect any kind of change, whatever that looks like,” Ribot said.
She elaborated that in society, it’s easy to feel like your voice doesn’t matter or that you can’t make an impact.
“The fact that you have a voice and you choose to use it is powerful,” Ribot shared.
To learn more about becoming a volunteer, attend an information session held on the first Thursday of each month. Register at AlzFla.org/VolunteerWebinar.
For more guidance and resources, call the Alzheimer’s Association 24/7 Helpline at 800.272.3900 or go to alz.org.
