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 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.
(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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