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Saturday, May 27, 2017

How an Arizona Parkinson's program for Spanish-speakers went global

, The Republic | May 26, 2017

The Phoenix-based program has expanded to 16 Spanish-speaking countries, focusing on communities where Parkinson's resources were previously "scarce or non-existent."

Maria Flores, 76, of El Mirage, takes a painting class designed to help retain motor skills 
for Parkinson's patients at the Muhammad Ali Parkinson Center in Phoenix on March 30, 
2017. (Photo: Cheryl Evans/The Republic)

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.

(Photo: Carlota Dena/Special for The Republic) 

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."

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."


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