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

Caregiver Corner

3 Essential Resources for 3 Different Kinds of Care Partners

Older couple walking through a park

November is National Family Caregivers Month, a time to honor care partners. This year, the Parkinson’s Foundation is highlighting the diverse experiences of caregiving with our theme, “Real Care. Anywhere.” 

Care partners are essential members of the care team for people with Parkinson’s disease (PD). However, the way they provide care and support can look different — from sharing a home with someone who has PD to providing care from afar to managing PD alone — caregiving is not one-size-fits-all. We are proud to provide support for all types of care partners. Here are essential resources for three different kinds of care partners: 

Everyday Care Partner 

An everyday care partner lives with someone who has PD and offers daily support. This can include setting up and attending appointments, helping with medications and navigating day-to-day challenges.  

1. Read our Care Partner Guide.

Whether you have been a care partner for a while or are just starting to navigate Parkinson’s disease, this guide is designed for you. It includes practical tips about things like building a support network and planning for the future, along with insights from other care partners and activities and worksheets to support your journey. 

2.  Check out tips for caring for yourself.

It can be hard to find balance as a care partner, but it is important to remember to care for yourself as well. These tips can help you prevent caregiver burnout, manage stress and build a support system. 

caregiver support group

3. Find a Parkinson’s support group near you.

In addition to providing a comfortable environment for asking questions and sharing experiences, support groups can lead to lasting friendships. Some groups are for care partners only, while others include care partners and people with PD. Contact our Helpline at 1-800-4PD-INFO (1-800-473-4636) to find one near you. 


Caring From Afar 

Some care partners live away from their loved ones and offer support from a distance. This type of caregiving can include managing logistics for everyday care, finding ways to coordinate tasks virtually or providing emotional support through regular phone calls and visits.  

1. Learn about Parkinson’s.

You will be better able to provide support if you have a basic understanding of PD. Our PD Library is filled with resources to help you learn more about Parkinson’s, being a care partner and managing daily activities and long-term plans. 

2. Connect with outside help.

If you are the primary care partner and live away from your loved one, consider hiring someone to help you manage day-to-day care needs. From utilizing your network to finding in-home care providers, know that there are many options available to help you assist your loved one from afar. 

3. Get yourself and your loved one connected with a local Parkinson’s Foundation chapter. 

Connect with other people with PD and care partners in each of your areas, learn about events and learn more about living well with Parkinson’s together, from a distance. 


Solo Care Partner 

Many with Parkinson’s care for themselves. This often-overlooked group acts as their own care partner, managing schedules, medications and wellness routines on their own. 

1. Join the PD Solo Network.

The PD Solo Network is a virtual network for people with Parkinson’s disease who live alone, by choice or circumstance. This community meets monthly to share ideas, review resources and build relationships. 

2. Review the Home Safety Considerations checklist.

Ensure your home is safe and easily accessible. This checklist will help you determine if anything about your home or lifestyle should be adapted to help you live well with Parkinson’s.  

3. Remember, our Helpline is always here for you.

Call or email the Parkinson's Foundation Helpline 1-800-4PD-INFO (1-800-473-4636) for answers to your Parkinson’s disease (PD) questions. Our Helpline is answered by PD information specialists who are skilled in providing the right information at the right time. 


Real Care Starts Here 

No matter what caregiving looks like for you, the Parkinson’s Foundation is here to help.  

  • Sign up for free online courses through our Care Partner Program 

Learn how you can celebrate National Family Caregivers Month at Parkinson.org/CaregiversMonth. 

My PD Story

Arman photo with family
People with PD

Arman Farahvar

Before my grandfather (Papa) was diagnosed with Parkinson's disease (PD) several years ago, my family noticed he was losing his footing and falling quite often. As an active person, it was very unlike him. After his diagnosis, he was still mobile. He needed to be supervised by me, a teenager at the time, but he could walk short distances and use the restroom. But progressively, it became so much worse.

Papa was one of the most prideful men I ever met, and his presence always stood strong. He commanded rooms. In a car, he was always the one behind the driver's seat. He threw the biggest parties! He had complete control of every aspect of his life.

But now he can now only speak few words at a time and needs assistance to walk. He has depression — a PD symptom experienced by 50% of people with Parkinson’s — because he is socially isolated from the people he loves, and cannot communicate in depth with his family.

But I've also seen the moments of love and humbleness. He loves to have his family around him in this time of need, to hug him, to do things for him or to give him gifts. My little sister makes arts and crafts for him.

He greatly appreciates every moment he has with us, his family. Just sitting down with him to watch a show means so much to him.

Stand up for Parkinson's Comedy Night

Parkinson’s changed Papa forever. That’s why I help my uncle, comedian Paul Farahvar, with his annual Stand Up For Parkinsons comedy night fundraiser. This unique event supports the Parkinson’s Foundation and directly helps people with Parkinson’s in our area as proceeds support the Parkinson’s Foundation Midwest Chapter. Everyone who comes out to support this cause helps honor Papa, and I’m proud to be a part of that.

Looking for ways to help your local PD community? Learn more on our How You Can Help page.

My PD Story

Photo of Paul
People with PD

Paul Schnabel

It started with something small: I found it difficult to button my shirt with my right hand.  

In 2022, that small sign became a life-changing diagnosis: Parkinson’s disease. With no family history and a lifelong focus on health, the news was a shock. 

I tackled it head-on with exercise, therapy, a healthier diet and a support group for those newly diagnosed. My wife stood beside me every step of the way, connecting with care partner groups and reminding me we were in this together. 

Then, in the spring of 2024, my world collapsed. She died suddenly, just three months before the birth of our first grandchild. For months, I let grief take over—poor diet, little sleep, no exercise. But slowly, I began to climb back, knowing she’d want me to keep living, not just surviving. 

Now, I share my journey through my blog—writing about Parkinson’s, grief and hope. My grandson is one year old, and when I hold him, I see her in his eyes. 

I’m grateful for my Parkinson’s community and proud to serve as a Parkinson's Foundation Ambassador speaking at local events, fundraising and supporting others facing the same road. Parkinson’s is part of my life, but it doesn’t define me. 

I have someone who I get to share my life with, as well as friends and family who lift me up. My disease is manageable. And every day, I try to live the kind of life my wife believed I could—one filled with purpose, gratitude, and love. 

My PD Story

Pam Marcott Headshot
Researchers

Pam Marcott, MD, PhD

2025 Postdoctoral Fellowship

Reclaiming Restful Sleep by Unraveling How Parkinson’s Changes the Brain 

Along with the typical movement-related symptoms, many people with Parkinson’s disease (PD) also experience other non-movement health issues. These non-movement symptoms can be quite debilitating and sometimes more difficult to notice by care partners. 

One common non-movement PD symptom is difficulty sleeping, often in the form of waking up frequently throughout the night. Pamela Marcott, MD, PhD, a recipient of a Parkinson’s Foundation Postdoctoral Fellowship, is casting a spotlight on the sleep-associated circuits of the brain to understand how exactly PD impacts sleep patterns. By uncovering the mechanisms behind PD-related sleep problems, she hopes to help advance new therapies for such disturbances. 

While much of the neuroscience of sleep is still a mystery, researchers do know that staying asleep through the night requires a highly calibrated balance of different signals in the brain. These sleep signals are relayed through brain cells called neurons and can vary in frequency and intensity, depending on their purpose. If these signals become altered and imbalanced, sleep fragmentation occurs with "frequent changes between different sleep and wake states, leading to less consolidated and restful sleep,” said Dr. Marcott. 

Under the mentorship of Alexandra Nelson, MD, PhD, and Ying-Hui Fu, PhD, at the University of California, San Francisco, a Parkinson’s Foundation Center of Excellence, Dr. Marcott is investigating how PD changes the behavior of neurons in a specific sleep-regulating region of the brain called the pedunculopontine nucleus (PPN). PPN neurons act like telephone operators, relaying important signals across the brain. Using mice with and without PD-like symptoms, she will measure how the disease affects the ability of PPN neurons to transmit their important sleep signals. 

“Results of this study will improve our understanding of the circuit mechanisms that regulate sleep disturbances in PD, which will inform future therapeutic treatments.” - Dr. Marcott 

After learning more about how PD changes the sleep-related neurons’ signaling ability, Dr. Marcott will then monitor the brains of the mice as they sleep. She will keep a close eye on how the PPN neurons activate during sleep phase transitions, as she believes PD causes these neurons to be overactive and lead to fragmented sleep. Observing in real time how PD alters sleep regulation in the brain will provide a strong foundation for understanding how to treat this symptom and give restful nights back to people with PD. 

 “As a physician scientist in this space I am committed to making meaningful discoveries in the laboratory that will benefit my patients, and I am excited to have the opportunity to start this phase of my career with the support of the Parkinson's Foundation,” said Dr. Marcott. 

Meet more Parkinson’s researchers! Explore our My PD Stories featuring PD researchers

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