A global, one-of-a-kind program developed by the Muhammad Ali Parkinson Center in Phoenix is changing the lives of thousands of Hispanics outside of the United States who are living with Parkinson’s disease.
What started as a small group in 2007 with few Spanish education classes and support groups has grown into a comprehensive and far-reaching program with a presence in 16 countries on three continents.
“This kind of outreach program is exactly what Muhammad and Lonnie Ali wanted when they agreed to help open the center in 1997,” says Holly Shill, MD, director of Muhammad Ali Parkinson Center at Barrow Neurological Institute. “Muhammad wanted to ensure that everyone, patients and caregivers alike, would have access to the same great care and support that he received.”
The center’s Hispanic Outreach Program is led by Claudia Martinez, who has been instrumental in both growing the program and developing its unique cultural sensitivities. The program emphasizes helping people with Parkinson’s and their caregivers to maintain a positive quality of life.
The first expansion of the program began after two patients from different cities in Mexico came to the Muhammad Ali Parkinson Center for a Spanish Parkinson’s education course and stressed that there was no education or support like this in their communities.
In response, the outreach program held its first international education seminar for which the University of Chihuahua and a group called Parkinson Sinaloa in Mexico, and the Parkinson’s organization called Fundación Parkinson Colombia in Colombia streamed the live internet event. From there, Martinez was contacted by other Parkinson’s support groups and programs throughout the world.
“The Spanish-speaking Parkinson’s community in the Americas is indeed large, committed, and also in need of resources and outreach. In the last three years, our comprehensive Hispanic outreach program has expanded to create a network of Spanish-speaking people with Parkinson’s disease and caregivers in 16 countries,” says Martinez. “The outreach resources that we provide through the Muhammad Ali Parkinson Center were previously scarce or non-existent in many of these communities. This unique network has stayed active via social media and online conferences.”
Interacting with this international community inspired Martinez to launch a unique initiative to give Hispanics with Parkinson’s the opportunity to represent their countries at the World Parkinson Congress which was held late last year in Portland, Oregon. The language barrier and cost were prohibitive for them to participate. However, with Martinez’s direction and the help of art instructor Gregory Pearce, the Muhammad Ali Parkinson Center developed a mosaic-style poster which allowed more than 100 people with Parkinson’s disease and their caregivers to represent the Spanish-speaking Parkinson’s communities in North, Central and South America.
Comprised of a variety of activities, the Muhammad Ali Parkinson Center’s Hispanic Outreach Program includes support groups, education classes, workshops for caregivers, and exercise and art classes. It also offers a Promotores Program for Hispanics with Parkinson’s, which is a first-of-its-kind course taught by specially trained Hispanic volunteers who provide in-home visits for people who otherwise would not receive important education and support. Additionally, its Spanish choir, called Voces Unidas, has received special recognition by the World Parkinson Congress for the song and video they produced which continues to attract media attention.
The Muhammad Ali Parkinson Center at Barrow Neurological Institute is one of the most comprehensive Parkinson’s treatment centers in the world, coordinating patient care, physical therapy, pharmaceutical and surgical care, research, and patient education and outreach. Headquartered at Dignity Health St. Joseph’s Hospital and Medical Center in Phoenix, the Muhammad Ali Parkinson Center is a Center of Excellence designated by the National Parkinson Foundation.