From the National Parkinson Foundation’s Parkinson Report Fall/Winter 2015
When Emilia Rodriguez’s mother, Irene, was diagnosed with Parkinson’s disease (PD) in 2004, her first thought was, “What is Parkinson’s?”
Because Emilia and her mother live together, Emilia started fielding calls from family members looking for answers. But questions like, “When is Mom going to die?” only fueled her frustration. She knew she had to get informed.
A simple Google search led her to Parkinson.org, where she and her mother found answers to difficult questions. After doing research and consulting with neurologists, Emilia was comforted. “See, Mom,” she said. “Your life is going to change, but you’re not going to die from this disease.”
For Emilia, it’s sad to see people with Parkinson’s struggling to get the care and understanding they need. It’s why Emilia strives to be the best caregiver possible. She saw firsthand how her mother hesitated to go out in public because her tremors and dyskinesia caused people to stare. Her mother’s experiences made her want to advocate for all people with Parkinson’s.
It’s also why Emilia ordered an NPF Aware in Care hospitalization kit. When her mother recently was hospitalized for a broken femur, Emilia was able to keep her care on track. She spoke to each nurse on every shift, making sure hospital staff knew how to treat a person with PD.
“I let them know that my mom had special needs and that her medication must be given on time,” Emilia said. “If it wasn’t for the Aware in Care kit, my mom wouldn’t have gotten the proper care she deserved.”
As a breast cancer survivor, Emilia knows the importance of reaching out and raising awareness. Today, she speaks to everyone she encounters about Parkinson’s. Whether she’s talking to hospital board members or to people on the street, she believes that education will lessen the stigma associated with this disease and, ultimately, create a healthier community.
Emilia’s passion for the Aware in Care campaign is evident in everything she does. “I can’t help it,” she said. “It’s like you’ve found buried treasure and you want to share it with everyone—because you know it’s going to help people.”
So far, Emilia has visited three hospitals in Southern California and has shared her experiences with the hospital staff. She’s making sure all the head nurses have an Aware in Care kit and that they ask patients the right questions, like if they need help cutting their food or opening lids. She hopes the relationships she forges with health professionals will help Parkinson’s patients get better care.
“What pushes me to do this is not only to raise Parkinson’s awareness, but for the love I have for my mother. I want to bring awareness of what Parkinson’s is, what it does to a family, what it does to a person, and what it does to communities,” she said.
At home, Emilia focuses on making her mother feel good about herself. “When I’m cooking and my mom’s having an off day, I’ll ask her to sit down with me and keep me company,” she said. “She thinks it’s not too helpful, but it’s huge—someone’s keeping you company, and keeping you going.”
To order a free Aware in Care kit, visit www.awareincare.org, or call NPF’s Helpline: 1-800-4PD-INFO (473-4636).