Parkinson’s Disease

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The Muhammad Ali Parkinson Center has an outreach program for Hispanic families living with Parkinson’s disease. On April 12, the center’s annual Raul Yzaguirre Educational Symposium will educate caregivers, healthcare providers and patients about the disease. Claudia Martinez, Hispanic outreach coordinator for The Muhammad Ali Parkinson Center, and Raul Yzaguirre discuss the program and what people can expect at the symposium.

The Muhammad Ali Parkinson's Center Hispanic Outreach Center Program provides services and information for families living with Parkinson's disease in Arizona and across the country. The annual symposium is being held next month. This event gives Latino families and health care providers an opportunity to get their questions answered about the disease. Joining me to talk about the event and the disease is Raul Yzaguirre. He's the executive director and presidential professor of practice for ASU's center for community development and civil rights. He served as president and C.E.O. of the national council from 1974 to 2004 and was diagnosed with Parkinson's disease in 2001. And also here is Claudia Martinez, Hispanic outreach coordinator for the Muhammad Ali Parkinson's center. It's good to have both of you back on "Horizonte" to talk about this important issue. Claudia, since we last had you here, there's been important developments based on research in California. Tell us about that.

Claudia Martinez: Well, yes, basically the importance of that research studies are the fact that they found or showed that Hispanics have a higher incidence of Parkinson's disease than other ethnic groups. And it's not known, but the importance is that we need, then, more services to be focused on targeting this community in particular. We know that there's a lack of education and a lack of services in Spanish available to them and that's why Muhammad Ali believes it's important to provide the services in Spanish and also inform the population of the resources available for them.

José Cárdenas: You've been working on this for a few years now. How far has the program advanced since you began?

Claudia Martinez: Well, we're happy to say that the program has grown greatly to be the largest program in the country, providing services in Spanish and also that upcoming symposium is the largest event in the country to educate Hispanic families affected by this disease. We also have a variety of services and some of them are very important, like our alley care program that provides the opportunity to people with no insurance or limited financial resources to get the best care possible. Meaning, they can be treated by a neurologist specialized in Parkinson's and get the Parkinson's medications at no cost. We also have an important service called Parkinson's Registry. Because as I said before, even though the Hispanic have the higher incidence of Parkinson's, as shown in the study, like one of the studies that showed this was down in California by Kaiser Permanente. Still there's no research done in this particular group so we need Hispanics to get involved in research. And this is why our Parkinson's Registry, with participation driven survey has been translated to Spanish.

José Cárdenas: You have the website for people to see and sign up.

Claudia Martinez: They need to go to that website and click on the link that says switch to Spanish, and they'll be able to tell us their personal story with Parkinson's. When they were diagnosed and who has treated them, medications, and symptoms and when they're done, they'll be part of a database; which has been also shared with other research institutions in collaboration to fight against Parkinson's disease.

José Cárdenas: Raul, Claudia has made clear, an emphasis of the Muhammad Ali Parkinson's' center and her outreach on providing information. You were first diagnosed in 2001. How would you compare the information available then to now?

Raul Yzaguirre: They have made great strides particularly in hard to reach communities. Parkinson's is a very insidious disease. It's complicated and not one symptom. There's no test for it. The diagnose is made clinically and it's difficult to diagnose. And it requires a lot of experience and a lot of practical help. One of the things that the center does is that not only gives you a sense of the medications you ought to be taking, but also how to stand, how to support yourself, the tricks that make everyday life bearable.

José Cárdenas: The symposium is named after you. This is the second year. How did you become involved with the Muhammad Ali Parkinson's center?

Raul Yzaguirre: I believe from the time that I was diagnosed knew there was an importance to go public, to take this disease out of closet and shadows. It's nothing to be ashamed up. It's something that happens to good people as well as bad people. We need more understanding to this disease. It doesn't get the kind of research dollars it deserves and I thought it was important to confront it and to also have a positive attitude toward the disease.

José Cárdenas: And Claudia speaking of promotion and we do have the number for the symposium on the screen. But where do you get your funding for this event?

Claudia Martinez: For this particular event, one pharmaceutical company, who is interested in providing education for the Hispanic community, found that as I said before, this is the largest educational event in the nation regarding Parkinson's disease. And that's why they decided to be our gold sponsor and help support this effort we're doing.

José Cárdenas: And the people that go, what will they hear? What kind of information will you be providing?

Claudia Martinez: The event will start with a community research fair where people will find information available here in the community; very useful for them and their family members. And then three very top of the class speakers, all of them neurologists and one of them, a medical director, Doctor Lieberman, giving the latest developments related with Parkinson's disease. And then we also have a booth with an ask-the-doctor session from 8:30 to 9:30 for all of the participants attending and as well as we'll have a nice ambiance for the whole family. And we're going to have lunch with mariachis and raffles and the idea is to not only educate all of the participants but to have a nice time where families can share and where families can get the sense that they're not alone they're a big family throughout the Muhammad Ali.

José Cárdenas: And we've got less than a minute left. But part of what happens by your involvement, you serve as an inspiration to Hispanics involved, how does it make you feel, and why do you think that occurs?

Raul Yzaguirre: I think people are inspired by the fact that people have the same disease are confronting it, in a positive way. That we want to build a community of people who have suffered this disease and we want the public to understand that we don't want pity. We want stem cell research. We want more research done on this disease and a better understanding of the nature of the disease.

José Cárdenas: We're going to have to wrap it up there. Wish you both the best of luck. Thank you for joining us.

Raul Yzaguirre:Executive director and presidential professor of practice, ASU's Center for Community Development and Civil Rights;Claudia Martinez:Hispanic outreach coordinator, Muhammad Ali Parkinson's Center;

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