El doctor Ignacio Mata es Neurogenetista de origen español quien dirige un laboratorio de Neurogenética en el Instituto de Genética Medica de la Cleveland Clinic, en Cleveland USA. Además, es profesor asistente de Medicina Molecular en el Cleveland Clinic Lerner College of Medicine (CCLCM) of Case Western Reserve University (CWRU).

El Dr. Mata inició su carrera científica durante su doctorado en el Hospital Universitario Central de Asturias, durante el cual hizo una estancia de dos años en la Clínica Mayo. Una vez terminado su doctorado hizo un postdoctorado en la Universidad de Washington (Seattle, USA) donde se hizo profesor asistente en el 2011. Tras varios años en Seattle, recibió una oferta de la Cleveland Clinic para liderar un laboratorio de Neurogenética. La investigación de su laboratorio está centrada en el estudio de los factores genéticos asociados a diferentes enfermedades neurológicas, con especial atención al Parkinson y las demencias. Además, el Dr. Mata dirige el Consorcio Latinoamericano de estudio de la genética del Parkinson (LARGE-PD por sus siglas en inglés), en el cual 12 países Latinoamericanos están participando para intentar aclarar si las causas genéticas son diferentes en esta población comparada con europeos. Este consorcio fue creado en el 2011 gracias a un proyecto de dos años financiado por la Parkinson’s Foundation. El Dr. Mata recibió en el 2016 uno de los tres primeros premios a jóvenes docentes (Stanley Fahn Junior Faculty Award) de la Parkinson’s Foundation que le ha permitido continuar su trabajo en Latinoamérica.

Dan Keller 00:08
Welcome to this episode of Substantial Matters: Life and Science of Parkinson's. I'm your host, Dan Keller. At the Parkinson's Foundation, we want all people with Parkinson's and their families to get the care and support they need. Better care starts with better research and leads to better lives. In this podcast series, we highlight the fruits of that research, the treatments and techniques that can help you live a better life now, as well as research that can bring a better tomorrow. Parkinson's disease is a complex condition with symptoms and needs that go beyond addressing just movement difficulties. And while it's advisable for people with PD to have a competent movement disorders neurologist to manage their medical treatments, it's really best to have a team of healthcare professionals who can address those additional needs as they arise and to coordinate care as the disease progresses. I spoke with Lisa Mann, the nurse and education director for the Oregon Health and Science University Parkinson's Center, and she told me who should be on the core team and how to bring other therapists and affiliated professionals into the fold as needed. She began by explaining why a team approach achieves the best outcomes.

Dan Keller 01:33
Why is it important to have a team, as opposed to a physician or a physician's office?

Lisa Mann 01:40
Well, I think with Parkinson's disease, it's really unique as a chronic illness in that there's so much more to it than just having a diagnosis and having kind of standard medical management of either pharmaceuticals or surgical interventions. It has not only the motor or movement symptoms that are involved with it, but it also has a whole host of non-motor symptoms. And because it's a progressive disease, and it's going to change over time, and disability is going to become more and more of an issue, it really takes looking at how that individual's disease is developing and what's best going to help them. And a lot of the healthcare providers that we consider important for a team really have a lot to contribute to care in Parkinson's as it progresses. So who should be on a team? What does it consist of? Initially, I think it's important, of course, to have your movement disorder specialist and preferably a nurse who's well-versed in Parkinson's disease, but the team should also include rehab therapists such as a physical, occupational, and speech therapist who have been trained in treating Parkinson's disease as well. And then the team can become anything else that might be needed. For sure, during the course of the disease, a social worker is very important. But we also encourage people to have other team members that they look to. It could be their exercise trainer. It could be someone within their community that they want to train up in Parkinson's disease to understand it a little better and help them out. But initially, I think the core is the rehabilitation therapist, the nurse, and the social worker.

Dan Keller 03:34
Who coordinates all this?

Lisa Mann 03:37
Generally, it's the nurse who is tasked with coordinating it in conjunction with the specialist.

Dan Keller 03:45
Does this exist mainly in centers of excellence, or can people find this in the community?

Lisa Mann 03:51
That's one of the challenges. For the most part, we do see well-developed teams in centers of excellence. That's part of being a center of excellence for the Parkinson's Foundation. However, one of our goals is to train other rehab therapists so that they understand it. So at OHSU Parkinson's Center, we have an initiative where we go out and train other teams throughout the state of Oregon, so that when we refer people to rehab therapists in their community, they have someone knowledgeable to treat them.

Dan Keller 04:24
How do you engage this team? Or when do you see everyone all the time, or is it pick and choose as needed?

Lisa Mann 04:33
I think it can be something that really needs to be, again, tailored for the individual with Parkinson's disease. Initially, I think it's important at diagnosis, or within a year or two, to see the whole team—basically the physical, occupational, and speech therapist. Not only can they do measurements and establish what a baseline is for the individual, but they can also help educate them in what may be coming and start to do therapies that could help prevent issues from developing sooner than they might.

Dan Keller 05:08
Is there evidence? Can you measure that when people engage a team or a team exists, outcomes are better longer term than if it didn't happen?

Lisa Mann 05:19
That's one of the areas of research that is just starting to develop in Parkinson's disease. We're starting in the last years to see a lot more research by the individual therapies to show what they're doing is effective for people with Parkinson's. But a whole team being evaluated can be challenging, and there are initiatives, particularly by Dr. Bloem in the Netherlands, to look at that. And it's just starting to be studied, and it's a little bit mixed because it's hard to study, because there are so many different variables in it.

Dan Keller 05:58
What's the advice to a newly diagnosed patient? How do you get a team together or find one already in existence?

Lisa Mann 06:06
Usually, when I have the opportunity to speak with people who have been recently diagnosed, I do talk about the importance of what different team members can bring to their care, how they can help with their education, and how they can help them throughout the course of the disease. And then they can look to either a center of excellence in their community, or, again, I try to have a resource for them where we can guide them to the people within their communities that can be helpful.

Dan Keller 06:37
Do people find it more helpful or somewhat overwhelming that they're faced with all these people who are going to help them, but that's appointment after appointment?

Lisa Mann 06:46
That's a great question, because we do hear that. And so one of the challenges, I think, is we really have to be patient-focused. We have to make sure that the patient and the caregiver are getting the care they need at the time that they need it. And so part of the job of the nurse and each team member is to make sure that the individual is not becoming overwhelmed, or their care partner isn't becoming more burdened by appointments, but that we tailor it and time it in such a way that it's beneficial for them. So we have to focus on really what are their issues of quality of life, and how do we meet that with the team? And sometimes, where there can be a lot of help from a particular team member, they may take a back seat just because we don't want to overwhelm the patient.

Dan Keller 07:37
Where does the care partner fit in? I mean, are they just bringing the patient to these visits, or are they actually part of the team or being helped by the team?

Lisa Mann 07:46
Whenever I give talks to patients and caregivers, I always say the first member of the team is the patient and the caregiver, and the caregiver has such an important role. Early on in the disease, they may not even understand exactly how important they will be in that partnership as the disease progresses, but I think it's important for them to attend these appointments even in the earliest phases so they learn more about Parkinson's as well. And then as the disease progresses, they become integral in being trained in helping the Parkinson's patient by the rehab therapists.

Dan Keller 08:25
It sounds like you're trying to prepare them for no surprises, that they're ready to handle what comes along.

Lisa Mann 08:30
Exactly. I think we really want to prepare for the worst but expect the best.

Dan Keller 08:38
What else is important to add?

Lisa Mann 08:41
I just think that, again, it's important for people to understand that there are healthcare providers in so many areas that have expertise that can help them during their progression of Parkinson's disease and their journey with that disease, whatever it may mean for them. Everybody's going to be different. And so a team can be different, and it can also include many different experts in other areas to handle non-motor symptoms, whether they be, you know, depression, so you might want to see a psychologist, or urinary issues and see a urologist. There's just a lot of support out there that hopefully we can bring to the patient when they need it.

Dan Keller 09:24
It sounds like there's a core team, but then now you've just referred to or alluded to this sort of peripheral team—urologist, psychologist, someone's exercise trainer. Are they coordinated with this, or do you deal with them, or is that just up to the patient?

Lisa Mann 09:42
So really, we try to help guide them again to people who have experience with Parkinson's. I think that any healthcare provider can be beneficial, but if they don't understand Parkinson's and its unique aspects, they can sometimes not be as effective as they could be if they have that training.

Dan Keller 10:03
Very good. Thank you.

Dan Keller 10:13
If you would like to find a Parkinson's Foundation Center of Excellence near you, or access other resources for coordinating care across the spectrum of PD needs, you can call our toll-free helpline to speak with our PD Information Specialists. They can answer questions and provide information about this topic or anything else having to do with Parkinson's. You can reach them toll-free at 1-800-4PD-INFO. If you have any questions about the topics discussed today, or if you want to leave feedback on this podcast or any other subject, you can do it at parkinson.org/feedback. At the Parkinson's Foundation, our mission is to help every person diagnosed with Parkinson's live the best possible life today. To that end, we'll be bringing you a new episode in this podcast series every other week. Until then, for more information and resources, visit parkinson.org or call our toll-free helpline at 1-800-4PD-INFO—that's 1-800-473-4636. Thank you for listening.

Lisa Mann, RN, BSN, MA is the Education Director and Team Care Coordinator for the OHSU Parkinson Center. Her position includes coordinating the operations of the movement disorders clinic, providing integrated support to patients and families, facilitating interdisciplinary care in the clinic and implementing community education and outreach programs for patients, families and health care professionals.

René Sánchez Mesa 00:09
Bienvenidos a este episodio de Substantial Matters: Life in Science of Parkinson en español. Soy René Sánchez Mesa, su anfitrión para los episodios en español en la Parkinson's Foundation. Queremos que las personas con Parkinson y sus familiares reciban la atención y el apoyo que necesitan. Una mayor atención inicia con el progreso de la investigación, lo que lleva a una vida de mayor calidad.

En esta serie de podcast resaltamos los frutos de esa investigación, los tratamientos y las técnicas que le pueden ayudar a tener una vida de más calidad, así como la investigación que puede resultar en un mejor mañana.

Este episodio es el primero de una serie de cuatro episodios con el doctor Mata, en los que cubrimos los temas de la ciencia genética, la importancia de las pruebas genéticas y la representación hispana en la comunidad de Parkinson.

Ignacio Mata, doctor en neurogenética, es investigador principal en el Departamento de Genómica Médica en la Cleveland Clinic. El tema de hoy es su trabajo en la ciencia genética de Parkinson y su colaboración con la Parkinson's Foundation.

Primero que nada, quisiera saber, doctor, ¿qué es la genética?

Dr. Mata 01:17
Hola, René, encantado de estar aquí. Pues la genética, así, haciéndolo sencillo, es básicamente la información que se transmite de padres a hijos. Es lo que hace que nosotros nos parezcamos a nuestros papás, que tengamos el color de pelo parecido, el color de ojos parecido.

Entonces, además de darnos las características físicas, también hace que la predisposición —exacto, la predisposición— a distintas enfermedades también se pueda pasar de generación a generación. Entonces, si tenemos en nuestra familia problemas de diabetes, de enfermedad cardiovascular, de enfermedades neurológicas, pues eso también se puede transmitir a través de la genética.

René Sánchez Mesa 02:01
Entonces, ¿el Parkinson se puede transmitir a través de padres a hijos?

Dr. Mata 02:02
Pues en muy pocos casos. La verdad es que menos del 1 % de los pacientes lo transmiten directamente. Lo que sí sabemos es que, por ejemplo, alrededor del 20 % de los pacientes tienen otro miembro afectado en la familia, lo cual nos está indicando que sí existe un componente genético que a lo mejor no es causa directa, pero sí modifica el riesgo que nosotros tenemos.

René Sánchez Mesa 02:24
¿Nos puede hablar un poco sobre su trabajo en la genética de Parkinson's disease?

Dr. Mata 02:30
Yo tengo un laboratorio en el cual intentamos encontrar justamente estos factores genéticos, o incluso ambientales. También estudiamos los factores ambientales que pueden causar directamente la enfermedad, que, como comentaba, eso pasa normalmente en familias donde hay muchas personas afectadas; ahí es donde hay un componente genético muy grande.

Pero en la mayoría de los casos lo que estamos encontrando son estos cambios pequeños en el genoma, en la información genética que nos pasa a nuestros papás, que hacen que nuestro riesgo esté aumentado.

Porque al conocer estos factores genéticos nos puede decir muchas cosas sobre cómo va a ser la enfermedad del paciente o quién está en riesgo, incluso antes de que sufra la enfermedad; quién está en un riesgo alto de desarrollar la enfermedad.

René Sánchez Mesa 03:14
¿Cómo ha trabajado con la comunidad en Latinoamérica y con la población de habla hispana aquí en Estados Unidos?

Dr. Mata 03:26
Pues la verdad es que hace muchos años nos dimos cuenta de que había una falta de representación de la población hispana en estudios genéticos, no solo en Parkinson, sino en todas las enfermedades. En realidad, es una población que está muy poco estudiada.

Entonces comenzamos un proyecto en Latinoamérica. En principio empezamos a colaborar solo con dos instituciones, una en Perú y una en Uruguay, y construimos un consorcio que ahora está formado por más de 35 instituciones en 12 países diferentes, en los cuales intentamos recabar información tanto genética como también de estos pacientes, de las características clínicas de los pacientes, para intentar ver si los factores genéticos que se conocen hasta la fecha —que son sobre todo estudios en población blanca europea— son también los que causan el Parkinson en la población latina o si hay factores diferentes que necesitamos conocer para poder tratar mejor a los pacientes de estas comunidades.

René Sánchez Mesa 04:26
¿Qué porcentaje de la población hispana tiene Parkinson? ¿Es mayor o menor en comparación, por ejemplo, con los blancos o los afroamericanos? ¿Es igual? ¿Qué han visto?

Dr. Mata 04:26
Sí, esa es una muy buena pregunta. Eso se lleva estudiando. De hecho, no hay muchos estudios en Latinoamérica; no hay estudios de prevalencia, o hay relativamente pocos, y no se tiene muy claro.

Los pocos estudios que se han hecho aquí en Estados Unidos, incluyendo población hispana, parecen indicar que la prevalencia de la enfermedad es muy parecida en hispanos a la que es en población europea.

Sin embargo, se sabe desde hace mucho tiempo que los africanos y los asiáticos tienen menos Parkinson. No sabemos exactamente por qué. Creemos que es una combinación entre la genética y quizás algún factor ambiental, la comida que tienen, el estilo de vida que tienen.

Pero sí que, desde el punto de vista de los hispanos, la prevalencia es tan alta como en europeos.

René Sánchez Mesa 05:21
¿En qué consiste su colaboración, doctor, con la Parkinson's Foundation?

Dr. Mata 05:22
Pues bueno, colaboro con ellos desde hace mucho tiempo. De hecho, la Parkinson's Foundation ha sido una fundación clave en el desarrollo de mi carrera profesional. Desde el principio nos han apoyado mucho con los proyectos en Latinoamérica.

Pero ahora, en la actualidad, colaboro intentando desarrollar muchas de las iniciativas que estamos desarrollando en Latinoamérica, intentar traerlas aquí a Estados Unidos para hacer que los pacientes hispanos participen en investigación, en ensayos clínicos.

Entonces tenemos proyectos. La Parkinson's Foundation tiene dos proyectos en particular en los cuales la participación de hispanos no es tan alta como nos gustaría.

Entonces, en conjunto con la Parkinson's Foundation, hemos creado un consejo —bueno, un comité de consejería— en el cual vamos a crear todos los materiales en español y vamos a crear iniciativas que se pueden utilizar para incrementar la participación de hispanos en estos proyectos, por ejemplo, PDI Generation, el Parkinson’s POP.

Nuestra meta es incrementar en al menos un 10 % la participación de hispanos.

René Sánchez Mesa 07:02
Gracias al doctor Mata por su tiempo.

René Sánchez Mesa 07:14
Como siempre, nuestros especialistas en información sobre el Parkinson podrán responder a sus dudas y ofrecer información en inglés o en español acerca de este tema o de cualquier otro que se relacione con el Parkinson.

Puede contactarlos llamando a nuestra línea de ayuda 1-800-4PD-INFO.

Para obtener recursos, videos e información en español, visite Parkinson.org.

Para dejar algún comentario sobre este podcast o cualquier otro tema, podrá hacerlo en Parkinson.org/feedback.

Si disfrutó de este podcast, no dude en suscribirse, así como calificar y dejar un comentario sobre la serie en Apple Podcasts o donde sea que reciba sus podcasts.

En la Parkinson's Foundation, nuestra misión es ayudar a todas las personas diagnosticadas con Parkinson a tener la mejor vida posible.

Hoy, con ese fin, les estaremos presentando un nuevo episodio de esta serie de podcast cada dos semanas en inglés, con esta serie inicial de episodios en español.

Hasta entonces, para más información y recursos, visite Parkinson's Foundation.org o llame a nuestra línea 1-800-4PD-INFO.

El doctor Ignacio Mata es Neurogenetista de origen español quien dirige un laboratorio de Neurogenética en el Instituto de Genética Medica de la Cleveland Clinic, en Cleveland USA. Además, es profesor asistente de Medicina Molecular en el Cleveland Clinic Lerner College of Medicine (CCLCM) of Case Western Reserve University (CWRU).

El Dr. Mata inició su carrera científica durante su doctorado en el Hospital Universitario Central de Asturias, durante el cual hizo una estancia de dos años en la Clínica Mayo. Una vez terminado su doctorado hizo un postdoctorado en la Universidad de Washington (Seattle, USA) donde se hizo profesor asistente en el 2011. Tras varios años en Seattle, recibió una oferta de la Cleveland Clinic para liderar un laboratorio de Neurogenética. La investigación de su laboratorio está centrada en el estudio de los factores genéticos asociados a diferentes enfermedades neurológicas, con especial atención al Parkinson y las demencias. Además, el Dr. Mata dirige el Consorcio Latinoamericano de estudio de la genética del Parkinson (LARGE-PD por sus siglas en inglés), en el cual 12 países Latinoamericanos están participando para intentar aclarar si las causas genéticas son diferentes en esta población comparada con europeos. Este consorcio fue creado en el 2011 gracias a un proyecto de dos años financiado por la Parkinson’s Foundation. El Dr. Mata recibió en el 2016 uno de los tres primeros premios a jóvenes docentes (Stanley Fahn Junior Faculty Award) de la Parkinson’s Foundation que le ha permitido continuar su trabajo en Latinoamérica.

Medicare, the U.S. government health insurance program, covers more than 63 million people, with more than 49 million people also receiving prescription drug coverage. It provides health insurance for adults over 65 as well as people with some medical conditions or disabilities. The system has many moving parts, and beneficiaries need to understand it to derive the most benefit, know what it covers and does not cover, and what costs they will be responsible for. An important time is the initial enrollment period, when people need to decide what kind of plan they want to select, either “original” Medicare through the government or a Medicare Advantage plan with a private insurer. Receiving prescription drug coverage is another decision, one that is particularly important to someone with Parkinson’s disease.

Fortunately, there are several resources to help people sort out all the options, and once enrolled, the year-to-year coverage decisions are much less burdensome. In this episode, Jane Sung, JD, a senior strategic policy advisor at the AARP Public Policy Institute, explains some of the intricacies of the Medicare system and helps to sort out the kinds of decisions people need to make about Medicare coverage.

Rodney Harrell is Vice President of Family, Home and Community at AARP, leading AARP Public Policy Institute’s team of issue experts related to LTSS, Family Caregiving and Livable Communities. His research on housing preferences, neighborhood choice and community livability are integral to the world-renowned AARP Livability Index that measures every US neighborhood. He is also a speaker, researcher and blogger on livable communities' issues and leads AARP’s Future of Housing work.

Scott Rider was diagnosed with Parkinson’s disease at age 47. A native of Columbus, Ohio, Scott is now retired at age 62 and lives with his wife Kelly in Beaufort, South Carolina. Scott Rider is a Parkinson’s Foundation Aware in Care Ambassador, National Development Committee Member and Carolinas Chapter Advisory Board Member.

Bart Post, MD was born on March 30, 1972 in Grootebroek, the Netherlands. He obtained his medical degree in 1999 at the University of Maastricht (with honors). In 2000, he started his training as a resident in Neurology at the Academic Medical Centre in Amsterdam, which he completed in December 2008. In 2002, he started a research project on ‘Prognosis in Parkinson’s disease’ that resulted in a PhD thesis in 2009. In 2006, he started a master of Sciences (MSc) education in clinical epidemiology at the EMGO institute in Amsterdam.

In 2009, Dr. Post was certified as a clinical epidemiologist. Since 2010, he has been working as a movement disorder neurologist in the Parkinson Centre in the Radboudumc in Nijmegen (head: prof. dr. B. Bloem). He is part of the steering committee of several large Parkinson trials: the LEAP-trial (Early administration of levodopa in de novo PD); and the CHEVAL-trial (administration of acetylcholine inhibitors in PD patients with hallucinations) and the Fair-Park trial (Iron chelation in early Parkinson’s Disease).

Within the Movement Disorders he is a member of the Multiple System Atrophy (MSA) Study Group. Dr. Post has organized several masterclasses on parkinsonism and movement disorders in the Netherlands. He is a member of the examinations committee of the Dutch neurology Society. He is also a member of two Dutch guideline committees: 1. guideline diagnosis and management of Parkinson’s disease 2. guideline diagnosis and management atypical parkinsonism. In 2018 he was a visiting member of the movement disorders group of Victor Fung in Sydney, Australia.

At the department of neurology of the Radboudumc, he is chair of the residency program for neurologists and, in the Radboudumc, he is co-chair of the central committee for residency programs. Dr. Post is co-director of the Parkinson Foundation Center of Excellence Radboudumc, Nijmegen, the Netherlands. He has a special interest in patients living with Parkinson’s disease at a young age and is heading a program of co-creating care for this patient group.

Crista Ellis was born and raised in the suburbs of Cincinnati, Ohio. She graduated from Miami University of Oxford with a degree in psychology. She is a certified yoga and meditation educator and a community program manager with the Parkinson’s Foundation. Crista leads the Parkinson’s Foundation international Mindfulness Monday program where she guides meditation practices for people with Parkinson’s, care partners, allied professionals, and more across the world. She joins us today to share with us about the benefits of cultivating a mindfulness practice when living with or affected by Parkinson’s disease.

Dr. Sam Goldman is Professor of Occupational & Environmental Medicine and Neurology at the University of California, San Francisco and an environmental medicine clinician and investigator at the San Francisco VA Medical Center. Prior to joining UCSF, Sam was a senior research scientist for many years at the Parkinson’s Institute in Sunnyvale, CA. He is also former co-director of the CDC-supported Western States Pediatric Environmental Health Specialty Unit. Sam attended medical school at the University of Texas Health Science Center and trained in Preventive Medicine and Environmental Health Science at the University of California Berkeley. Along with his longtime collaborator Dr. Caroline Tanner and others, he has published extensively on the epidemiology of Parkinson’s disease and other neurodegenerative diseases, with a focus on environmental risk factors. Foremost among these are pesticides, solvents and traumatic brain injury, and their interactions with genetic susceptibility factors.

Dan Keller (00:08)
Welcome to this episode of Substantial Matters: Life and Science of Parkinson’s. I’m your host, Dan Keller. At the Parkinson’s Foundation, we want all people with Parkinson’s and their families to get the care and support they need. Better care starts with better research and leads to better lives. In this podcast series, we highlight the fruits of that research, the treatments and techniques that can help you live a better life now, as well as research that can bring a better tomorrow. As we mentioned in our last episode on community outreach, only about 40% of people with Parkinson’s in the US see a neurologist for their care, and even fewer see a specially trained movement disorder specialist. For certain communities, for example geographic areas or some racial or ethnic groups, the proportions may be even less, so whole communities may lack crucial Parkinson’s information, resources, and medical care. Targeted outreach can help bring the much needed information and resources into the community, but it has to be tailored by more than just language. The messaging needs to be culturally appropriate and delivered by a trusted source. In recognition of Hispanic Heritage Month, which takes place every year from September 15 through October 15, today we’re discussing outreach efforts that bring Parkinson’s information and services to Spanish language communities. Dr. Claudia Martinez, the Hispanic Outreach Coordinator at the Muhammad Ali Parkinson’s Center at the Barrow Neurological Institute in Phoenix, Arizona, a Parkinson’s Foundation Center of Excellence, describes the methods she uses to help Hispanic people with Parkinson’s get the best possible care. She also talks about Parkinson’s programs that are available to Spanish speakers in Phoenix, across the United States, and around the world.

Dr. Claudia Martinez (02:13)
We embrace the Hispanic culture is not a fact of translating services or just translating programs, but instead reshaping them so that they are culturally sensitive, and many times, not only reshaping programs, but also creating new programs or developing programs to respond to the specific needs of the Hispanic community that we serve.

Dan Keller (02:38)
What are some of those cultural differences that you would make specific to this community?

Dr. Claudia Martinez (02:44)
For example, we have a program that is very unique, our promotores program, and that program was born in order to respond to families who were very isolated in the Phoenix metro area because of a series of factors. For example, transportation is a big issue because many of the Parkinson’s patients and their spouses came to the country because their grown children brought them to the United States in their 60s, 70s. They didn’t drive in their hometowns. They didn’t need to. Public transportation was way more available than there is in Phoenix, and then when they move in Phoenix, they depend on their adult children, who work full time and have their own families, to move around. So that’s why many of them are isolated, or it’s very difficult for them to attend our programs like support groups, educational classes, exercise classes. So I realized that was a big barrier to start with, transportation, with type of age population. Then there’s also the trust factor, because of immigration policies, because of the difference in the language and the culture. So people have certain fear of, you know, approaching an organization where they might think that no one speaks their language or understand their culture. So we end up with these families who we knew needed the help but couldn’t come to us. So that’s why our promotores program was born with volunteers who had a family member with Parkinson’s, wanted to give back to the organization, and received specific training in Parkinson’s disease and also on how to be good community health workers or promotores. And they helped us put together a flip chart with basic topics taken from our Parkinson’s 101 seminar that helped themselves and their family members to better understand Parkinson’s disease and live with it on a daily basis, and this flip chart was developed with their own experiences on a very simple language with everyday expressions from, you know, what is common in their cultures, and that’s how we break that barrier, because it’s lay people belonging from the community, the ones who deliver these educational sessions that are in home. So they visit the families, and it’s one visit per week for a total of 13 weeks. And during that time, not only relationship of trust but also friendship is born. And many times, these promotores help these isolated families to start coming to trust the organization, to trust the center, to come out of their homes and start reaching or joining some of our programs. For those who have the transportation barriers during the weekdays, then we have weekend programs that are run on Saturdays, and then they join those programs.

Dan Keller (05:37)
How do you find them? Or they find you to begin with, if they’re isolated? Is it through neurologists? Or how do they find you?

Dr. Claudia Martinez (05:43)
It’s a variety of avenues. Our neurologists are one of them. Community health centers that we reach out to are another avenue. The media, Hispanic media, has been very helpful, too, in helping us get the word out about our programs and also a lot of other community based organizations who work with Hispanic families.

Dan Keller (06:06)
So it sounds like your outreach has to be pretty broad. You’re contacting the media. You’re contacting probably churches and community groups so they can contact the people who need your services.

Dr. Claudia Martinez (06:16)
Yes, definitely. Networking has been very valuable since the very beginning of putting together our outreach program, and right now, for example, our outreach has expanded thanks to social media and thanks to the capability of the Barrow of webcasting many of our seminars, educational seminars in Spanish and our conferences. Just last weekend, we had our annual conference, our Muhammad Ali annual conference in Spanish, and it was webcasted live as a resource that is available for anyone who would like to view it on demand. And so this is also another way that we are enlarging our outreach outside of Phoenix into the United States and also into other Spanish speaking countries that now are part of a network that we’ve been kind of growing. So right now, we have people joining our conferences from close to 16 different countries in Latin America.

Dan Keller (07:17)
Are there even cultural differences there that you have to address, or is the language the unifying factor? Or do you find different cultural kinds of barriers or things you have to deal with, from say, Mexico versus Chile, or something like that?

Dr. Claudia Martinez (07:32)
Oh, yes, because Hispanics are very diverse in many different ways that you point out, language and many cultural factors, such as food and music, but we also have factors that are common to us and that we can share, and the way that you approach it is what makes the difference, because if you approach it in a culturally sensitive and respectful way, it’s enriching. So we learn from each other, and we kind of embrace those differences, and it’s something that we always like to learn, like learn some new things from each other. For example, in our groups in Phoenix, most of the participants are from Mexico, but we also have participants from countries in Central America, like El Salvador and Guatemala, and we have a few from South America like Ecuador and Peru, and when we get together, like for events such as our support groups, that are not called support groups, but comadres, compadres, which means like pals or close friends, one of the nice things that we like to do is share our different food from different countries. So it’s one of the things that people take pride on to bring something that is typical from their homeland and share with the rest, and kind of explain what ingredients. So it’s always a nice experience for me. I am from Colombia, and when I first started, it was a challenge for me also to learn some of those words, and I will say it right at the start this close. I’m from Colombia, and I may use some words that might not be familiar for you, or that might not even exist in your country, or that might even get me in trouble sometimes. So please keep that in mind and help me and teach me. So that’s been a very enriching experience for all of us.

Dan Keller (09:17)
Is there any kind of overriding advice for someone who wants to put together a program in any culturally different community, not only Hispanic, but if it’s Chinese or something else, what’s your advice to do the outreach and get people to trust you and come in?

Dr. Claudia Martinez (09:34)
Well, a few words of advice will be being culturally competent, which many times we think we are, but we probably are not, and being part of the culture or speaking the language doesn’t make you to be culturally competent. So if you can get that type of training, if you think you might need it, that will be wonderful. And another great advice is to use the available resources in the community. So try to learn the culture that you want to approach. Try to learn what organizations are already working with that particular community. Attend their events, like kind of try to get kind of more in the middle of the way they do their events, even if it’s not related to your specific job and to neurology, but if it’s a diabetes event, or it is something related to faith based organizations, just attend the events just to see the interaction and what’s important for that community, what’s the way that they communicate, who are the community key partners that you need to get in touch with. I think that’s very valuable.

Dan Keller (10:41)
Anything we’ve missed or is interesting to add?

Dr. Claudia Martinez (10:45)
In our Hispanic Outreach Program, we have series of resources that are available for people living with Parkinson’s disease who are Spanish speakers, and they don’t need to live in Phoenix. They can contact us via email. They can also reach us by phone, and we have newsletters. We have two newsletters per year in Spanish that are called Vida Positiva, or positive life, that we can send out via mail or via email. And we also have recordings of our educational seminars and our conferences that are also available online, so they can reach us at the Muhammad Ali Parkinson’s Center or at my direct line, which is 602-406-2453.

Dan Keller (11:31)
Great. Thanks.

Dan Keller (11:41)
Many Parkinson’s centers have outreach coordinators or case managers who can connect you to resources and care. If you need help finding services in your area, call our toll free helpline at 1-804-PD-INFO. Our PD Information Specialists speak English and Spanish, and they can help you find community programs, wellness activities, health care providers, and allied health services such as physical, speech, and occupational therapy. You can also order any of the Parkinson’s Foundation educational materials through our helpline. This includes resources in both English and Spanish. If you have any questions about the topics discussed today, or if you want to leave feedback on this podcast or any other subject, you can do it at parkinson.org/feedback. We’ll respond to some questions in future episodes. At the Parkinson’s Foundation, our mission is to help every person diagnosed with Parkinson’s live the best possible life today. To that end, we’ll be bringing you a new episode in this podcast series twice a month. If you or someone you know is more comfortable learning about Parkinson’s in Spanish than in English, we have plenty of resources available for you at www.parkinson.org/espanol.

Dan Keller (13:10)
Till then, for more information and resources, visit parkinson.org or call our toll free helpline at 1-804-PD-INFO, that’s 1-800-473-4636. Thank you for listening.

Claudia Martinez graduated as a primary care physician in her native Colombia, where she practiced in underserved communities. After she moved to Arizona, she completed a graduate certificate in gerontology at Arizona State University. In 2007, with the support of a Parkinson’s Foundation grant, she started the Hispanic Outreach Program at the Muhammad Ali Parkinson Center (MAPC). Since then she has developed a comprehensive and culturally sensitive program for Hispanic families living with PD that is currently recognized as the largest in the country.

In the last four years, Dr. Martinez has expanded the MAPC Hispanic Outreach program overseas. She has developed a strong international network by delivering ongoing PD-specific educational webinars. Currently, the network includes support groups, individuals and organizations from 16 Spanish-speaking countries. In 2016 Dr. Martinez was invited to join the World Parkinson Congress (WPC) Communications Committee to represent the Spanish-speaking PD community worldwide and to present at the WPC Leadership Forum.

In addition to her work with the Hispanic community, Dr. Martinez coordinates the MAPC expressive art workshops for people with PD and their caregivers. She was also instrumental in the launching of a PD awareness tool that uses the power of music: the song written by songwriter and singer Jose Maria Lobo, “I am the beat of another song.” A recognized artist herself, Dr. Martinez is passionate about combining her creative personality with her impactful works in the PD community.