The Phoenix program has used webcasting and other online tools to expand to 16 countries, establishing a network of patients and caregivers in communities where Parkinson’s resources were “scarce or non-existent.” Those local groups decide how they want to participate, making them extensions, rather than replicas, of the Phoenix initiative.
The Phoenix-based program has expanded to 16 Spanish-speaking countries, focusing on communities where Parkinson’s resources were previously “scarce or non-existent.”
The doctors didn’t sugarcoat Onésimo López’s Parkinson’s diagnosis.
“They told us, ‘You’re about to experience something overwhelming, something terrible,’ ” said Carlota Dena, his wife.
What they didn’t tell the couple was how to cope with the degenerative disease, marked by tremors, stiffness and balance problems. When López and Dena, both 54, asked for more details, “They just told us, ‘It’s in God’s hands now,’ ” Dena said.
It took nearly a year — and traveling more than 1,100 miles — for the residents of Guamúchil, Mexico, to get a satisfying answer to that question. After Dena found the Muhammad Ali Parkinson Center online, the couple traveled 18 hours by bus to the Phoenix facility.
“I was scared to make the trip, especially with Onésimo just coming out of a depression,” Dena said. “But when Claudia (Martínez, Hispanic-outreach coordinator for the center) came out to greet us, she gave us a really warm hug and told us, ‘We’re going to teach you about Parkinson’s.’ The next day, we were meeting with a team.”
At that point, in July 2012, the Barrow Neurological Institute center’s Hispanic-outreach program had been offering Spanish-language seminars, art and exercise classes, caregiver workshops, and support groups to Phoenix-area residents for five years.
Officials hadn’t seriously considered connecting with Parkinson’s patients beyond the country’s borders. López and Dena’s visit demonstrated an acute need for information in underserved parts of Spanish-speaking countries, Martínez said.
Since then, the program has used webcasting and other online tools to expand to 16 other countries, establishing a network of patients and caregivers in communities where Parkinson’s resources were “scarce or non-existent.” Those local groups decide how they want to participate, making them extensions, rather than replicas, of the Phoenix initiative.
“It’s really amazing to see how much people have done in order to get access to the information,” Martínez said. “Little by little, the Spanish-speaking Parkinson’s community is becoming more active and united.”
Meeting a need
Experts estimate more than 10,000 people with Parkinson’s disease live in Arizona.
Pinpointing the number of Hispanic Arizonans with Parkinson’s is more difficult.
Linguistic barriers or cultural preferences, such as an inclination toward homeopathic remedies, “may prevent members of the Hispanic community from seeking medical care or being properly diagnosed,” said Holly Shill, movement-disorder neurologist and director of the Muhammad Ali Parkinson Center. “But … because we know the Hispanic community is at higher risk than other minorities for getting Parkinson’s disease, it is likely that the number is quite large.”
From the start, the Hispanic-outreach program’s mostly free offerings catered to the “cultural sensitivities” of Spanish-speaking patients, while maintaining the Alis’ vision of providing services to everyone regardless of their ability to pay.
Over 10 years, the program has drawn Phoenix-area patients from Mexico, El Salvador, Guatemala, Ecuador and Peru.
“We didn’t build the program to just be a translation of our existing (English-language) services,” Martínez said. “We had the idea of reshaping them according to the culture, and also creating new services to meet needs that weren’t being met for the Latino community.”
For instance, the “Promotores” volunteers provide educational home visits in Spanish to families who are “isolated” because of transportation issues, fear or other obstacles. The volunteers teach tips on living with the disease using a story featuring a Hispanic family with a father who has Parkinson’s.
The program named its Spanish-language support groups “Comadres” and “Compadres” (“Friends”) to address some Hispanic patients’ reluctance to expose vulnerabilities to strangers. The names convey the “idea of sharing with friends or peers in a very not-intimidating setting,” Martínez said.
The center also delivers Spanish-language seminars and conferences in a different format than those in English, encouraging relatives of all ages to accompany patients. Certified volunteers care for children, teenage volunteers lead activities for other teens and center officials deliver presentations for adults.
“In Latino families, many times you have three generations living in the same household, and the younger generations are pretty involved in care-taking,” Martínez said. “This way, everybody feels welcome.”
Like being ‘with family’
Phoenix resident Lourdes Chávez, 50, said she would’ve been “embarrassed to come” to the facility seven years ago had the center not offered services in Spanish.
“I was really depressed when I first got diagnosed,” the Durango, Mexico, native said. “I felt like I couldn’t do anything and just wanted to cry and sit around. So I was nervous to come. But being with (other Spanish-speakers) makes it feel like I’m with family.”
Displaying paintings she’d made over the years in the center’s bilingual art workshops — an activity beloved by many in the Hispanic-outreach program — Chávez described the classes as “a new way to express myself.”
“Before, I used to sew costumes. I can’t do that anymore because my hand trembles,” she said. “Painting helps you control the trembling, but you’re so deep into what you’re making, you forget about the disease.”
Corina Villalobos, 68, described a similar journey.
“When I started coming to class, I felt like, ‘I can’t,’ ” said the Tempe resident from Chihuahua, Mexico. “But I kept going, and it’s the most beautiful thing. You can express your frustration, your fears through the artwork. I have paintings I can’t believe I did — it’s like as you lose certain abilities, the disease awakens others in your mind.”
Villalobos said Spanish-language support groups and a choir have allowed participants to “understand each other on multiple levels” and avoid becoming isolated.
Jorge López, a recent addition to the painting class from Guatemala, said it took him a long time to find a place that could provide affordable help.
The 58-year-old learned about the Muhammad Ali Center by coincidence, he said: His niece was shopping when another customer fell, and when she went to assist him, the man mentioned he had Parkinson’s and had just come from therapy at the facility.
“I do painting, therapy, exercise,” he said in Spanish, filling in the outline of a quetzal, Guatemala’s national bird. “It has allowed me to be less stressed and more calm.”
A network of advocates
The Hispanic-outreach program’s international expansion was largely driven by Parkinson’s patients and caregivers who had the desire to learn but not the resources.
The size and scope of their efforts vary.
“We’ve had universities in Colombia and Chile that have joined and opened a special room for webcasts to the community or to physical-therapy students,” Martínez said. “We’ve had smaller support groups get a room with internet access and a projector and host something. And we also get pictures where it’ll just be six to eight people gathered around a PC in someone’s home.”
Dena and López run one of the more established outfits, the Sinaloa Parkinson’s Patients Neuromotor Association, but they started small. After a second trip to the Phoenix center in September 2012, they began brainstorming ways to access its conferences and seminars from Mexico.
“We have very good neurologists where we live, but there’s a total lack of information,” Dena said. “When we got home, I started knocking on doors asking if anyone would help.”
By spring 2013, Dena had worked out a deal with the Guamúchil Higher Learning Center to transmit video from the Muhammad Ali Center. Today, she and López run their association out of a rented home, streaming webcasts and hosting activity sessions there.
“I’ve been living with Parkinson’s for five years, and it’s a battle,” said 55-year-old Marcela Ceballos, who drives two hours to attend the sessions. “I’m low-income, so I’ve been very grateful to have this group and learn more about the disease, about what helps and what doesn’t.”
López and Dena also distribute webcasts to health-care professionals and Parkinson’s groups in other Mexican states.
Martínez stressed that the Muhammad Ali Center doesn’t dictate how groups operate abroad.
“What we’ve been able to provide is a model for active participation and how to become Parkinson’s advocates,” she said. “If people don’t have the opportunity to correct preconceptions or wrong information about the disease, that makes the process of learning how to live with it much harder.”
For Onésimo López — who has long since conquered the hopelessness that took hold after his diagnosis — the support he has found among other families managing Parkinson’s is almost as important as the instruction the center provides.
“We need each other so that we don’t feel so alone,” he said.
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