Podcasts

Episodio 23: Crear un plan de autocuidado y por qué es importante para los cuidadores

Ser trabajadora social en una clínica significa ser parte del equipo médico y brindar atención a las personas que viven con Parkinson y a sus familias. 

En este episodio, hablamos con Adriana González, trabajadora social en el Centro para el Parkinson y Otros Trastornos del Movimiento de la University of California, San Diego. Como trabajadora social, Adriana ayuda a las familias y a los cuidadores a identificar recursos comunitarios y los apoya cuando enfrentan situaciones difíciles. 

La meta de Adriana es conocer a las familias desde el inicio de la enfermedad para hablar acerca de los diferentes periodos y crear un plan antes de llegar a un momento de crisis. 

Para Adriana, lo más importante es concientizar a la comunidad de habla hispana acerca de la enfermedad de Parkinson para mejorar el manejo médico de esta enfermedad y apoyar a más familias y cuidadores que están tratando de ayudar a su ser querido con Parkinson.

Como noviembre es el Mes Nacional de Cuidadores Familiares, hablamos con Adriana acerca de la importancia del autocuidado: un plan que garantiza que los cuidadores o aliados de cuidado estén atentos a su propio bienestar.

Publicado: 15 de noviembre de 2022

Agradecemos al patrocinador de este episodio de podcast:

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Podcasts

Episode 136: Traveling with Parkinson’s Disease

Parkinson’s disease (PD) can be an impediment to certain activities, but with proper planning, people can still pursue many of the things they have always enjoyed. One of those things is travel – to see family, visit friends, or explore new sights and cultures. One key to enjoying travel is planning. Pay special attention to issues that are known to affect how you feel and function.

Packing extra medications when traveling has always been a good idea, but with today’s unpredictability of flight schedule changes and cancellations, as well as the possibility of contracting COVID, it makes sense to carry even more than a few days’ supply of extra medication. Anticipate managing any shifts in medication timing if you are visiting a different time zone, interruptions to your exercise and sleep routines, in addition to unforeseeable events and changes.

In this episode, we hear from two people with valuable advice and tips for traveling with PD. Rebecca Miller, PhD is a clinical psychologist and Associate Professor of Psychiatry at Yale University School of Medicine and is a person living with PD. Occupational Therapist Julia Wood, MOT, OTR/L is Director of Professional and Community Education at the Lewy Body Dementia Association. An overriding message from both of them is “planning for the unpredictability of today's world.”

Released: September 6, 2022

Podcasts

Episode 92: Clinical Issues Behind Impulse Control Disorders

Impulse control disorders in Parkinson’s disease (PD) are more common than originally thought, affecting an estimated one in six people with PD taking dopamine agonists. They may appear as unhealthy or compulsive levels of shopping, gambling, eating, sexual activity, or involvement in hobbies. They appear to be related to dopamine replacement therapy, so finding the right level of medications can be a challenge to manage symptoms without incurring impulsivity issues. It is important that people with PD, their care partners, and health care professionals be aware of and recognize these activities so that they can be addressed promptly to avoid, for example, social, emotional, economic, and health issues that may result from these disorders. The harm often goes beyond the person with the disorder and can affect family, friends, and others around them. Once recognized, impulse control disorders can often be managed or eliminated by working with a doctor to change dopamine agonist medications or dosage, or in some cases, even going on to deep brain stimulation.

Dr. Mark Groves, Consultant Psychiatrist at the Parkinson’s Foundation’s Center of Excellence at Mount Sinai Beth Israel in New York City, discusses the problem of impulse control disorders, what forms they may take, approaches to recognizing them, and the need to acknowledge them as a biologic condition and not a character or personality flaw.

Released: November 3, 2020

Podcasts

Episode 139: Community Care Programs for Care Partners

Caregiving can be an intensive endeavor, not to mention the physical, mental, emotional, and even financial aspects of it. Just as people with Parkinson’s disease need support services, so, too, do their care partners. In this episode, Social Worker Cara Iyengar, MSW, LISW, the coordinator of the Parkinson’s Foundation Center of Excellence at the University of Iowa in Iowa City, discusses some of the Foundation’s resources that she shares with care partners, her three-pronged approach to supporting them, some of the challenges she faces in bringing support services to people in a rural state like Iowa, and the kind of feedback that she has received from care partners.  

Released: November 1, 2022

Thank you to this episode’s podcast sponsor:

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Podcasts

Episode 141: How Social Workers Can Help Ease Anxiety about the Unknown

The news of a Parkinson’s diagnosis can be overwhelming. So many questions arise, including how it will change the person’s life, what lies ahead, and what to do first. Social workers can be a vital resource in helping a newly diagnosed person, care partner, and family navigate the road ahead, as well as provide ongoing support through the course of the disease. They are the health professionals who know and can coordinate many of the most helpful resources. Or as social worker Lance Wilson, LSW, C-SWHC, ASW-G, the education outreach coordinator for the Jefferson Health Comprehensive Parkinson’s Disease and Movement Disorder Center in Philadelphia, a Parkinson’s Foundation Center of Excellence, puts it, social workers are the Yellow Pages for health care, tying people into the resources they need. He says social workers can help put people’s minds at ease by assessing their needs and lining up professionals who can provide medical, mental health, spiritual services, and more.

Released: December 13, 2022

Podcasts

Episodio 22: Cambios cognitivos

Cuando uno piensa en la enfermedad de Parkinson (EP), es fácil asociarla más con los síntomas motores, como la rigidez o el temblor; pero también existen síntomas no motores, como los cambios de estado de ánimo, la ansiedad o la depresión.

En este episodio, hablamos con la doctora Elsa Baena, neuropsicóloga clínica en el Barrow Neurological Institute, Centro de Excelencia de la Parkinson’s Foundation, acerca de estos cambios cognitivos asociados con el Parkinson.

La doctora Baena explica la conexión entre el Parkinson y la cognición y cómo pueden prepararse las personas con Parkinson para estos cambios (no sólo las maneras farmacológicas, sino también las terapéuticas).

Asimismo aprenderemos acerca de los miembros del equipo de atención médica que pueden apoyar a una persona con Parkinson y a sus familiares con estos cambios cognitivos.

Lanzado: 18 de octubre de 2022

My PD Story

Smiling couple in jackets standing on a boat with a lake and trees in the background.
People with PD

Patricia Nuxoll

I was diagnosed with Parkinson’s disease (PD) in a strange way. I was at a pain clinic getting a steroid shot in my back when it was suggested that I should see a neurosurgeon. I agreed, so an appointment was made. When I met him, he kept looking at my hand. After a few minutes he stopped talking and said he wanted me to see a neurologist for an EMG (a diagnostic test that measures muscle response). Not being sure what that was I said OK, and another appointment was made. 

When the neurologist appointment came, I met her and before the EMG I was asked many questions and went through a series of tests. Not really knowing why, but knowing there must be a reason, I complied. Finally, I had the EMG, and then a cognitive test. 

She took very detailed notes the whole time and excused herself for a few minutes. When she came back, she said we had several things to talk about and proceeded to tell me that I had Parkinson’s.  

My reaction was what it might feel like if you were hit in the face with a football. I never saw it coming.

The neurologist was very kind and explained what led to the diagnosis. It turns out the neurosurgeon noticed my tremors and sent me to her thinking that she needed to look further. It took me two weeks to process this information. 

I was in complete denial but after that, I was able to take a physical therapy (PT) class designed for Parkinson’s called BIG movement. It has changed my life. It has been the best thing I could have ever done. 

My outlook is positive, I am boxing now, I walk confidently, my balance is better. I participated in my first research study, the Parkinson’s Foundation genetics study, PD GENEration, because this hits as close to home as you can get. I want to do whatever I can to help find a cure so that hopefully no one in my family or anyone else’s family ever has to go through this experience.

I wanted to participate in this study for a couple reasons. The first was for my family. I felt it was important to find out if I had a genetic link to PD they wanted to know about. Once I submitted my genetic sample, I asked each person in my family if they wanted the results and told them I would respect their answer with no judgement. The second reason was for myself because having Parkinson’s has opened my eyes to just how much I have never known or understood, and more information could only help me.

It felt great to participate in this study because I felt that I was being proactive. For me, anything that can help get answers is one step closer to hopefully finding a cure for this disease.

I will tell anyone who is newly diagnosed, don't feel bad if you get angry, or are in denial, that's a normal response. In my area there is a wonderful group that I connected with that we meet once a month and share news about research we have found, diet, PT, anything. It’s great because we all understand where we are coming from without having to explain. 

Parkinsons is hard but you don't have to travel that road alone even if you have family at home who help you.

Tips for Daily Living

Extreme Weather Emergency Preparedness

Extreme weather

Preparing for extreme weather is a burden for anyone in the path of a storm or fire. People with Parkinson’s disease (PD) and their caregivers should take these tips into consideration to ensure that all PD-related needs are accounted for when preparing for a hurricane or any other natural disaster:

  • Check all your medications. Take inventory of all medications and reorder any that are running low. 
  • Write your medication list down. Write down or print a list of all your medications (not just PD medications). Include medication name, strength, times taken and dosages. This customizable medication schedule can help.
  • Make a list of your doctors. Make a list of your doctors and their contact information and take it with you if you need to evacuate before a storm.
  • Water and food preparedness. Medications may need to be taken with a meal and usually water. Calculate five gallons of water per person per day. Buy enough water and food to last three to five days.
  • Order or print your Hospital Safety Guide in the event you need to educate an emergency responder or health care professional about your PD needs. Order one here.
  • Have your Medical Alert Card handy. Keep it with you at all times. Print one here.
  • Check in with your support network before and after. Arrange for at least one friend or family member to call you during a weather emergency, especially if you live alone.
  • Practice anxiety reduction techniques. The stress of possibly losing power or being evacuated could make anyone anxious, but stress can worsen PD symptoms. Download a meditation or breathing app or try to distract yourself by reading a book.
  • Know your nearest shelter. Visit the Red Cross website to find yours. Depending on where you live and your PD symptoms, you may qualify for a Medical Special Needs Shelter where you can get additional assistance with basic tasks. 

Preparing for power loss:

  • Avoid overheating. If you lose air conditioning, monitor your body heat. Drink more than the recommended nine to 13 cups of water per day. Exercise in the early morning or late afternoon when cooler outside. Know the signs of heat stroke: flushed face, high body temperature, headache, nausea, rapid pulse, dizziness and confusion. If heatstroke is suspected, go to your nearest emergency room or urgent care for treatment.
  • Address lightheadedness. Many people with Parkinson’s experience Neurogenic Orthostatic hypotension (nOH), characterized by a drop in blood pressure when going from a seated position or lying down to standing. Exposure to heat can make nOH worse. If you regularly or occasionally experience lightheadedness or dizziness when you stand up, take extra precaution if you lose power and air conditioning by staying hydrated and standing up slowly. 
  • Prepare your devices. If you have a deep brain stimulator (DBS), make sure your patient controller is charged. If you use a DUOPA pump, plan ahead to keep your DUOPA cassettes refrigerated. Call your doctor to ask if you should have extra oral medication on hand in case you are unable to use your pump at any point. 

Preparing for an evacuation:

  • Write and follow a packing list. Make sure to include all medications, water and snacks.
  • Know your community response plan. Learn about your area’s response and evacuation plans before a storm hits. Find your state’s emergency management agency here.
  • Take all your medications in their bottles with you. Try to keep them all in one travel bag.
  • Take your walker, cane or wheelchair, even if you only use it occasionally.  
  • Consider your devices. If you have a deep brain stimulator, remember to bring your patient controller. If your DBS neurostimulator is rechargeable, be sure that your recharger is fully charged and bring it along with the charging dock.

 

Download or order a Hospital Safety Guide today. Looking for more information about preparing for extreme weather with Parkinson's? Call our Helpline at 1-800-4PD-INFO (1-800-473-4636). 

My PD Story

Man in a suit smiling at the camera.
People with PD

Dr. Gregg Busch

Originally, a proud Appalachian from Elizabeth, WV, I was officially diagnosed with Parkinson’s disease (PD) in 2018 after more than a decade of fairly mild symptoms beginning with a slight tremor in my hand. Unfortunately, by 2018 my Parkinson’s was getting markedly and quickly worse. 

Fortunately, at this time, I lived in Tucson, AZ, which is home to world-class treatment for people with Parkinson’s. Over the years, I have learned much about living a fruitful, productive and happy life with Parkinson's while my disease continues to advance — natural behavior for the incurable, progressive, neurodegenerative disease of the brain and central nervous system. 

After more than 20 years, Parkinson’s had become a great challenge in executing the many aspects of 

my career as a college president, researcher and a national leader of higher education reform. I transitioned from academic leadership shifting my focus on a purpose-driven mission of helping make lives better for people with Parkinson’s and their care partners, educating and bringing awareness to others about Parkinson's, and advocating to members of Congress for the passage of National Plan to End Parkinson’s Act and other related bills. 

I have a doctorate and am a graduate of West Virginia University, School of Medicine and West Virginia University, College of Human Services and Education. I also attended, among other institutions, Marshall University, University of Louisville and West Virginia College of Graduate Studies.

I served 22 years as a medical examiner and 20 years in higher education, as a professor, dean, vice president, president, academic researcher, theorist, and author. 

After 18 years (13 without medication) living and challenging my Parkinson's journey each day, I accepted early retirement in 2023 concluding my career as a liaison for The White House Rural Stakeholders Initiative. 

I continue to volunteer, to the best of my ability, with Advanced Stage 5 Parkinson’s Disease and advocate for a range of bills, including bills to support the national Congressional education agenda, needs for American’s rural communities  and Appalachia, equity for women and girls in traditionally male dominated science careers, the rights of the LGBT and other marginalized communities, and issues surrounding Parkinson’s.

Unfortunately, I am too familiar with Parkinson's with my mother, five of her siblings, and her father all also having the disease.

Living well with Parkinson’s means continuing to volunteer, spending time with family and friends, and adapting to whatever challenges come my way. For me, living well meant to continue guiding and mentoring others to learn to live their Parkinson’s journey well too. It requires that we acknowledge that we have Parkinson’s without letting it have us. This belief is why I decided to serve in leadership and advocacy roles and leave my footprint stomping out the disease.

I became an Ambassador for the Parkinson's Foundation and the Davis Phinney Foundation for Parkinson's, and continue my advocacy before Congress and participate in research with the Michael J. Fox Foundation for Parkinson's Research. 

I want to model living well for others and to show, motivate, and encourage others to do the same. Now retired, you will likely find me spending time with my wife, a Parkinson’s expert and my care partner, two children and four grandchildren. I will also be found collaborating in research. I love learning, encouraging others to mentor, learn and build successful and fulfilling lives while enriching the community, and Congressional advocacy on behalf of for The Episcopal Church and AARP.

Become an Ambassador today and help people with Parkinson’s! Learn more about our volunteer opportunities and complete the volunteer interest form. We’ll contact you to learn more about your skills and interests.

Raise Awareness

Afrontando los cambios en las relaciones personales con Parkinson

An older and younger woman hugging

Con el avance de la enfermedad de Parkinson (EP), probablemente descubra que las relaciones y los papeles que desempeña en su vida cambian. 

En parte, ciertos síntomas de la EP, como la dificultad para hablar o el enmascaramiento, (también conocido como la reducción de la expresión facial o hipomimia) pueden afectar cómo se expresa y se comunica con los demás. Recuerde que su lenguaje corporal y su capacidad para hablar son importantes en su papel como padre o madre, cónyuge, amigo, abuelo o empleado. Ayudar a los demás a comprender la enfermedad de Parkinson puede darle poder sobre su experiencia con la EP. 

La comunicación tras un diagnóstico

Aunque los síntomas del Parkinson —desde los síntomas motores, como problemas para moverse, hasta los síntomas no motores, como la depresión— pueden hacer que se sienta tentado a aislarse, recuerde que aún es posible mantener relaciones significativas y productivas. Para lograrlo, tendrá que abordar los problemas que afectan a su capacidad para comunicarse eficazmente con las personas de su vida. 

Llegará el momento en que quiera informar a los demás de su diagnóstico. El momento correcto y la preparación pueden ayudar. Para empezar, probablemente no quiera hablar de todos los detalles de su enfermedad, pero dé a las personas más cercanas a usted información precisa acerca de su diagnóstico de Parkinson y cómo lo está manejando. Puede ser útil explicarles sus síntomas actuales: los que pueden ver y los que no. Ayúdeles a prepararse para lo que podría ocurrir más adelante y cómo podría afectarles. Piense en estas interacciones como el inicio de una conversación que, en el mejor de los casos, continuará mientras aprende a vivir con la EP. 

Cambio de roles en la familia

Al irse adaptando a la vida con Parkinson y progresen los síntomas, sus roles dentro de la familia pueden evolucionar. Es posible que su cónyuge asuma un papel más bien de cuidador o aliado en el cuidado, que usted tenga que dejar de hacer ciertas tareas o que dependa de sus hijos adultos para que le ayuden a acudir a las consultas médicas. Los cambios de roles pueden ser difíciles, pero adaptarse es vital para vivir con Parkinson. 

Si tiene problemas de reducción de la expresión facial y del habla desde el principio, es una buena idea prever el momento en el que pueda necesitar que otra persona le ayude a comunicarse, sobre todo en las consultas médicas. Si no tiene cónyuge o pareja que le ayude, busque a un familiar o amigo de confianza. 

Comunicándose con su pareja

Los síntomas del Parkinson pueden ser increíblemente frustrantes para la persona que lo tiene, pero también pueden ser un desafío para su pareja. Puede que les cueste reconocerlo como la misma persona de antes del diagnóstico. Pueden sentir que están fracasando como aliados en el cuidado o cónyuges porque no pueden establecer vínculos que antes consideraban básicos. 

Los problemas de comunicación entre los seres queridos pueden aumentar el estrés del cuidador y llevar al agotamiento. Dedique tiempo a trabajar en su comunicación. Esto puede ser dedicar un tiempo semanal para conectar con los demás, asistir juntos a un grupo de apoyo o buscar un consejero de salud mental. Cuando la comunicación se vuelve más fácil, la vida es más fácil para todos los implicados. 

Comunicándose con sus hijos

Compartir el diagnóstico de Parkinson con amigos y familiares fomenta la conexión y el apoyo. También es importante decidir cuándo y cómo contárselo a los niños en su vida. Las respuestas sencillas a preguntas básicas pueden ayudar a los niños a entender mejor el Parkinson. 

Consejos para hablar con sus hijos o nietos

  • Utilice términos sencillos para explicar su diagnóstico y los síntomas. 

  • Si tiene más de un hijo, intente hablar primero con uno a la vez.  

  • Prepárese para responder a preguntas básicas, como si el diagnóstico es mortal, si la EP es contagiosa y si a su hijo le dará. 

  • Invite a su hijo a hacer preguntas y prepárese para que algunas de ellas sean de naturaleza delicada. 

  • Haga una visita para que su hijo lo acompañe a su neurólogo para hablar de la enfermedad y de lo que puede esperar.  

  • Informe a sus hijos que habrá algunos cambios en la vida diaria y que trabajar en equipo ayudará a su familia.  

  • Enseñe a su hijo a explicar la enfermedad a sus amigos, en caso de que le pregunten por ella.  

Comunicándose con sus amigos

En algún momento, querrá tener una conversación franca con sus amigos acerca del Parkinson. Intente mantener contactos con personas optimistas que comprendan su enfermedad y estén dispuestas a aprender más y, tal vez, incluso a echarle una mano cuando sea necesario. 

Manejo de la vida laboral

Decidir cuándo informar a su empresa y a sus compañeros de trabajo acerca de su enfermedad es una decisión que sólo usted puede tomar. Comunicárselo a su empresa cuanto antes tiene sus ventajas, sobre todo si sus síntomas empiezan a empeorar y a afectar su desempeño. Ocultar su enfermedad en el lugar de trabajo puede provocar un estrés adicional, que puede empeorar los síntomas. Si su habla se ve afectada, los demás pueden empezar a sacar conclusiones precipitadas. 

Informar a su jefe de su enfermedad puede permitir que su empresa se adapte a sus necesidades especiales. La Ley de Estadounidenses con Discapacidades (Americans with Disabilities Act o ADA, por sus siglas en inglés) obliga a las empresas a realizar adaptaciones razonables para los empleados. La ADA define estas adaptaciones como "cualquier modificación o ajuste de un puesto o del entorno de trabajo que permita a un solicitante o empleado cualificado con una discapacidad participar en el proceso de selección o realizar las funciones esenciales del puesto". 

Planificar con anticipación

  • Consulte la política de personal de su empresa. Infórmese acerca de los permisos por enfermedad y el mantenimiento de los beneficios de salud. 

  • Antes de dirigirse a tu jefe, decida si sólo va a informarle de su enfermedad o si va a solicitar adaptaciones específicas.  

  • Escriba los puntos que desea tratar. Antes de la reunión, hable con su médico para que escriba una carta de apoyo y pídale recomendaciones concretas acerca de cómo aprovechar al máximo su tiempo de trabajo.  

  • Sea franco y positivo. Indique su voluntad de trabajar juntos para identificar posibles adaptaciones que le ayuden a seguir haciendo su trabajo.  

Vivir solo

Salir con alguien y entablar nuevas amistades puede ser difícil para cualquiera y más aún para alguien que vive con Parkinson. 

Crear su equipo de apoyo para la EP

Al navegar por esta enfermedad, es importante que encuentre su comunidad de la EP. Estas son algunas ideas:   

  • Grupos de apoyo. Explore los grupos locales de Parkinson y los grupos para personas con enfermedades crónicas. 

  • Su lugar de culto. Podría encontrar un sentimiento de pertenencia y comunidad.  

  • Organizaciones y eventos locales relacionados con el Parkinson. Asistir a eventos o trabajar como voluntario le ayudará a crear sólidos vínculos sociales. ¿No sabe por dónde empezar? Consulte nuestros eventos de Moving Day de la Parkinson’s Foundation, una caminata por el Parkinson, que se llevan a cabo en todo el país.  

  • Salas de chat y foros de Internet. Muchas personas solteras con Parkinson han forjado amistades sólidas a través de comunidades virtuales.  

  • Clases de ejercicio para el Parkinson. Llame a nuestra Línea de Ayuda 1-800-4PD-INFO (1-800-473-4636), opción 3 para español, para obtener una lista de clases de ejercicio y bienestar para la EP cerca de usted.  

Navegue por los cambios en las relaciones con confianza explorando más de nuestros recursos.

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