Substantial Matters: Life & Science of Parkinson’s

Los cuidadores y aliados de cuidado brindan un apoyo inestimable a las personas que viven con la enfermedad de Parkinson (EP). Con el tiempo, el papel del cuidador puede tener que ajustarse y adaptarse a medida que avanza la enfermedad. Aunque el cuidado pueda parecer la tarea principal que lo abarca todo, es vital que usted sea capaz de encontrar el tiempo y los recursos necesarios para cuidar de sí mismo, antes de poder cuidar de su ser querido con la EP. Como parte del Mes Nacional de Cuidadores Familiares, la Parkinson’s Foundation se une a organizaciones de todo el país para honrar a los cuidadores durante este mes de noviembre. Invitamos a todos los miembros de la comunidad de la EP a que dediquen seis minutos a un cuidador en su vida. En este episodio, hablamos con Carla Velastegui, quien ha sido la cuidadora principal de su madre que vive con Parkinson desde hace más de 10 años. Ha visto de primera mano cómo ha progresado la enfermedad de su madre y comparte cómo su papel de cuidadora, hija y profesional en activo, ha ido cambiando a lo largo de los años. Aunque el ser cuidador conlleva desafíos, Carla comparte los recursos y las herramientas que le han ayudado a manejar su bienestar físico y mental para atenderse a sí misma y a su madre. Destaca la importancia de relacionarse con otros cuidadores que atraviesan experiencias muy similares, comparte su proceso de reflexión al revelar su papel de cuidadora en su trabajo e intenta educar mejor a la comunidad sanitaria y laboral acerca de la necesidad de brindar más apoyo a los cuidadores.

Parkinson’s disease is a chronic and progressive disease that affects both the person with Parkinson’s and the care partner. Considerations need to be made to deal with the present challenges, while also anticipating future caregiving needs. Patsy Ponder Dalton was the caregiver for her husband, David, since he was diagnosed with Parkinson’s at the age of 44. Even after David’s passing, she is still a highly engaged facilitator for two Parkinson’s support groups in Missouri. In this episode, she provides insight into dealing with the challenges of the disease as it progressed, along with the changes in her caregiving responsibilities. She discusses the dynamic of her and David’s shared decision making over time, provides suggestions for mitigating the physical challenges of the disease by adapting her home environment, and as a care partner, how Patsy needed to make time for her own well-being. Even though David is gone, she still finds comfort and motivation in being part of the Parkinson’s community and maintaining her role in support groups.

Early-onset, also called Young-onset Parkinson’s disease (YOPD), affects about 4% of the one million people with Parkinson’s disease (PD) in the United States, with a diagnosis before age 50. Although there are many characteristics similar to late-onset PD, there are a few differences such as disease progression, response to medications, and genetic risk factors. Because of the earlier age of onset, YOPD may also differ in how it affects an individual’s social relationships, marriage, parenting, family life, employment, and finances. Participating in research studies is one way that people with YOPD can help reveal the role of genetics and other factors in how the disease occurs and manifests in younger people. People with YOPD can most often still live a happy and productive life. Support groups, family support, and knowledge gained through groups, articles, conferences, and webinars can improve one’s care, functioning, and quality of life. Finding a comprehensive health care team that can offer any needed physical, social, emotional, and spiritual services is also important. The Parkinson’s Foundation and its Helpline, as well as community resources, are good places to start. Today’s guest is Israel Robledo, a Parkinson’s Foundation Research Advocate who has YOPD. Research Advocates partner with researchers to design trials, provide recommendations, and report study results to the Parkinson’s community. They are trained experts with lived experiences and use their voice and perspective to inform key decisions in Parkinson's research studies. In this episode, Israel shares his experience of participating in research studies throughout the course of his disease. This episode is sponsored by Biogen’s Luma study, for more information about Luma, visit LumaStudy.com.

Considered “atypical Parkinsonian syndromes,” over half of people with progressive supranuclear palsy (PSP), corticobasal degeneration (CBD) and multiple system atrophy (MSA) are initially misdiagnosed with Parkinson’s disease (PD) due to similarities in early symptoms as well as lack of awareness of these rare, neurodegenerative diseases among many healthcare professionals and the general public. This is the third of three podcast episodes within our atypical parkinsonism podcast series, organized in partnership with CurePSP and designed to address the unique care needs across the disease stages of PSP, CBD and MSA. Jessica Shurer, Director of Clinical Affairs and Advocacy at CurePSP, and Nancy Montgomery, who cared for her husband who was diagnosed with progressive supranuclear palsy, cover common challenges experienced by people living with PSP, CBD or MSA and describe helpful resources and roles played by healthcare teams that support the quality of life of patients and family care partners. Jessica Shurer, Nancy Montgomery, and podcast host, Dan Keller, have disclosed that they have no relevant financial disclosures.

Considered “atypical Parkinsonian syndromes,” over half of people with progressive supranuclear palsy (PSP), corticobasal degeneration (CBD) and multiple system atrophy (MSA) are initially misdiagnosed with Parkinson’s disease (PD) due to similarities in early symptoms as well as lack of awareness of these rare, neurodegenerative diseases among many healthcare professionals and the general public. This is the second of three podcast episodes within our atypical parkinsonism podcast series, organized in partnership with CurePSP and designed to address the treatment interdisciplinary approach of PSP, CBD and MSA. In this second episode of the series, Heather Cianci, Outpatient Neurological Team Leader and founding therapist of the Dan Aaron Parkinson’s Rehabilitation Center, Penn Therapy & Fitness at Pennsylvania Hospital in Philadelphia, Pennsylvania and Julia Wood, Director of Professional and Community Education at the Lewy Body Dementia Association, cover the treatment and interdisciplinary approach to care for atypical parkinsonism. Julia Wood, Heather Cianci, and podcast host, Dan Keller, have disclosed that they have no relevant financial disclosures.

Researchers have discovered several genes that are associated with the risk of developing Parkinson’s disease (PD). To better understand this relationship, the Parkinson’s Foundation is conducting a large population study, PD GENEration: Mapping the Future of Parkinson’s Disease, a national initiative that offers genetic testing and counseling for Parkinson's-related genes at no cost for people with PD. Since different ethnic groups may have differences in their genetic backgrounds, possibly affecting the course of their disease, PD GENEration is now expanding beyond the borders of the mainland U.S. to Hispanic communities in Puerto Rico and the Dominican Republic. Our guest in this episode is Rebeca De Leon, Associate Director of the Clinical Research Department at the Parkinson’s Foundation. She explains why it is important to include people of diverse backgrounds in the study, how and where the Foundation is reaching out to enroll people from a range of communities in PD GENEration, and ultimately, how participation in the study will help scientists better understand the disease.

Considered “atypical Parkinsonian syndromes,” over half of people with progressive supranuclear palsy (PSP), corticobasal degeneration (CBD) and multiple system atrophy (MSA) are initially misdiagnosed with Parkinson’s disease (PD) due to similarities in early symptoms as well as lack of awareness of these rare, neurodegenerative diseases among many healthcare professionals and the general public. This is the first of three podcast episodes within our atypical parkinsonism podcast series, organized in partnership with CurePSP and designed to address the overview, treatment and care of PSP, CBD and MSA. In this first episode of the series, Dr. Alex Pantelyat, Associate Professor of Neurology at Johns Hopkins University School of Medicine shares an overview of atypical parkinsonism, overlaps and differences with Parkinson's disease, the red flags and how PSP, CBD and MSA are diagnosed. Dr. Pantelyat has disclosed that he is a Scientific Advisory Board Consultant for MedRhythms, Inc. and a consultant for both Ferrer Internacional, S.A. and SciNeuro Pharmaceuticals. Podcast host, Dan Keller, has disclosed that he has no relevant financial disclosures.

Typical treatment of Parkinson’s disease (PD) consists of oral levodopa/carbidopa, along with other oral medications. Although there is no one-size fits all treatment, people with PD may experience more “off” periods, or symptom fluctuations, as the disease progresses. In this case, non-oral treatments, such as pump therapy, may be another option to consider. Examples of currently available pump therapies for Parkinson’s include medication, namely apomorphine, delivered under the skin (subcutaneous) from a pump, or a gel containing levodopa/carbidopa delivered by a pump inserted through the skin directly into the upper part of the small intestine (intestinal gel pump). In June 2023, expert Parkinson’s clinicians and researchers led a course in Poland about current pump therapies and what may be coming in the future. In today’s episode, Professor Ray Chaudhuri, one of the course leaders and Director of the Parkinson’s Foundation Centre of Excellence at King’s College Hospital in London, discusses some of the topics in the course, including who would be a good candidate for pump therapy, the benefits and risks, and recent developments in pump treatment options.

Variants of several genes have been identified that raise the risk of developing Parkinson’s disease (PD). PD GENEration: Mapping the Future of Parkinson’s Disease is the Parkinson’s Foundation groundbreaking initiative that seeks to uncover the relationship between genetics and one’s risk for PD. The goal is to eventually help people better manage their disease, facilitate research into better treatments, and potentially, find a cure. The study is now expanding to actively enroll people of diverse backgrounds. Variants of certain genes associated with the risk of developing PD have different frequencies among different populations. Besides reaching out to Black and Asian communities in the mainland United States, PD GENEration is now expanding to Hispanic communities in Puerto Rico as well as in the Dominican Republic (DR). Although every person’s disease is unique to them, understanding genetic differences across broad groups of people may help explain why a person’s experience with the disease differs from others. That is why it is important for PD GENEration to enroll people from diverse communities, where genes associated with the disease may occur at different frequencies. Our guest in this episode is Amasi Kumeh, Director of Research Partnership at the Parkinson’s Foundation. She explains why it is important to include people of diverse backgrounds in the study and how and where the Foundation is reaching out to enroll people from a diverse range of communities in PD GENEration.

Existen diversas causas de los problemas del sueño que pueden experimentar las personas con Parkinson. Entre los trastornos del sueño más comunes están la apnea del sueño (asociada normalmente a un ronquido fuerte), el insomnio y el trastorno donde las personas actúan los sueños mientras duermen. También sabemos que los problemas emocionales, que son síntomas no motores del Parkinson, pueden estar ligados a los problemas del sueño. Por ejemplo, si uno tiene depresión o ansiedad, puede llevarlo a dormir mal en general. En este episodio de podcast, escuchamos al doctor Alberto Ramos, profesor de neurología clínica y director de investigación del Programa de Trastornos del Sueño en la University of Miami Miller School of Medicine acerca de los efectos del Parkinson sobre el sueño. El doctor Ramos comparte formas de mejorar el sueño, tratamientos que existen para estos problemas y consejos para las personas con la EP que están experimentando estos problemas, así como para las parejas que experimentan interrupciones debido a estos trastornos del sueño.

Of the one million people living with Parkinson’s disease (PD) in the United States, nearly one-third of them will have a hospital encounter each year. When hospitalized, three out of four people with PD will not receive their medications on time, possibly leading to worsening symptoms, medical emergencies, and a significantly increased length of stay, greatly increasing costs to the medical system overall. To address this problem, the Parkinson’s Foundation developed key tools and resources for patients and providers. Today’s guest, Peter Pronovost, MD, PhD, a major force in advancing hospital safety, helped develop recommendations for making hospitals safer for people with PD, which includes standards of care. Dr. Pronovost practices critical care medicine and is Chief Quality Officer and Chief Clinical Transformation Officer at University Hospitals in Cleveland, Ohio.

Intimacy is a significant part of any relationship, and sexuality is an important aspect of intimacy. Parkinson’s disease (PD) can present challenges for both intimacy and sexuality, both for the person with PD and for the care partner. The Parkinson’s Foundation Helpline can be a good resource for coping with these issues. In this episode, Anna Moreno, MSW, a Senior Parkinson’s Information Specialist at the Parkinson’s Foundation, highlights some of the more common questions that care partners pose about sexuality to the Helpline. Although she herself is not a therapist, she can direct callers to appropriate resources. Gila Bronner, MPH, MSW is a Certified Sex Therapist and Supervisor of the Sex Therapy Services at the Tel-Aviv Sourasky Medical Center in Israel. In this episode, she provides insight into these typical problems that care partners report, and she offers some recommendations to help overcome them. For many years, she has researched and provided therapy and advice about intimacy and sexuality relating to PD in Israel and around the world.

Since routine outpatient procedures may pose special needs and risks for someone with Parkinson’s disease (PD), extra planning is in order for the period before, during, and after the procedure. The procedures may be medical or dental, for example, teeth cleanings, colonoscopy, or magnetic resonance imaging (MRI). Fortunately, the Parkinson’s Foundation has developed a course that highlights key recommendations and strategies to promote optimal care and health outcomes for people with PD during planned and unplanned hospital stays, which can include inpatient, outpatient, and emergency department hospital encounters. In this podcast episode, movement disorders neurologist Muhammad Nashatizadeh, MD of the University of Kansas Medical Center in Kansas City, a Parkinson’s Foundation Center of Excellence, discusses how people with PD can incorporate this same safety protocol to ensure optimal outcomes when they plan for and have routine outpatient healthcare procedures.

There’s a new and greater understanding of the relationship of Parkinson’s disease (PD) and art. Engaging in artistic practices can enhance mood, cognitive function, and enjoyment of life for people with PD. Importantly, how art causes these effects is giving greater insight into the neurobiological basis of how people in general create and respond to art. Central to this insight is the role of the neurotransmitter dopamine. In this episode, Prof. Bas Bloem, Director of the Parkinson’s Foundation’s Center of Excellence at Radboud University Medical Center in Nijmegen, the Netherlands, explores the emerging importance of incorporating art in the treatment of PD and the role of dopamine for enhancing people’s enjoyment and creativity. Dopamine has been called the “happiness hormone,” but it may also be the creativity hormone.

Besides being a movement disorder and affecting other physical functions, such as the digestive system, blood pressure control, and sleep, Parkinson’s disease (PD) can alter cognition, other mental functions, and mood. Apathy can be part of the disease, resulting in a lack of interest, enthusiasm, or motivation. It can result in a vicious cycle, decreasing one’s motivation to exercise and follow medication schedules, which are essential components of managing PD, including mood. In this episode, movement disorder neurologist Nabila Dahodwala, MD, MS, Director of the Parkinson’s Foundation Center of Excellence at the University of Pennsylvania, describes what apathy is, how it can affect a person’s life, and ways to help alleviate it and gain motivation to move through exercise.

Las investigaciones han encontrado que 3 de cada 4 personas con la enfermedad de Parkinson no reciben medicamentos a tiempo cuando están internadas en el hospital. Cuando esto ocurre, 2 de cada 3 personas experimentarán complicaciones innecesarias. Con visitas hospitalarias más a menudo y una alta sensibilidad a la frecuencia y dosificación de los medicamentos para la enfermedad de Parkinson, las personas con Parkinson enfrentan grandes riesgos en un hospital. En este episodio, hablamos con Adrian Mireles acerca de sus experiencias en el hospital desde su diagnóstico de Parkinson. Adrian comparte los desafíos que ha enfrentado cuando ha estado hospitalizado y qué le resultó útil durante esas visitas, como el kit de seguridad hospitalaria Aware in Care de la Parkinson’s Foundation. Adrian también explica lo que significa ser su propio promotor y comparte consejos para otras personas con la enfermedad de Parkinson acerca de cómo conseguir una mejor atención en el hospital.

A common misconception is that palliative care implies hospice, when in fact, palliative care can and should be a component of the treatment of any serious disease, including Parkinson’s. The word “palliation” means providing relief from pain and other symptoms, with a goal of improving quality of life. Individuals receiving palliative care also may receive other treatments, with curative intent if available. On the other hand, palliation can be a part of hospice, but in hospice, a person no longer has curative options or chooses not to pursue them. In this episode, Maggie Ivancic, MSW, LCSWA, the Clinical Social Worker and Parkinson’s Foundation Center of Excellence Coordinator at the University of North Carolina at Chapel Hill, discusses aspects of palliative care – how it differs from hospice, its intent, and how and where to access it.

Aunque los medicamentos suelen ayudar a minimizar las fluctuaciones motoras de la enfermedad de Parkinson, hay ocasiones en las que la medicación no es suficiente y se plantean opciones de tratamiento avanzadas. Es importante explorar las opciones quirúrgicas con su especialista en la EP si esto es algo que puede considerar. La cirugía a menudo se reserva para aquellos que han optimizado y agotado los medicamentos para el temblor de Parkinson o que experimentan profundas fluctuaciones motoras. En este episodio de podcast, escuchamos al Dr. Gonzalo Revuelta, profesor asociado de neurología y director médico del programa de estimulación cerebral profunda en MUSC, la Medical University of South Carolina, sobre las opciones de tratamiento quirúrgico disponibles para las personas con la enfermedad de Parkinson.

Historically and even today, Parkinson’s disease (PD) is a clinical diagnosis, wherein a physician observes signs of the disease and an individual reports symptoms. In routine practice, there is no blood test, other biomarker, or machine to make the diagnosis or to track progression of the disease. But given advances in computing power and through computer analysis of massive amounts of data, artificial intelligence (AI) may add a valuable tool to the diagnostic process. In one form of AI, a computer analyzes a stream of input data to discern patterns that represent an outcome of interest. A recent study used AI to non-invasively collect and analyze data on breathing patterns, using one night of breathing signals from 7,671 individuals with PD as they slept. One of the co-authors of the study was Aleksander Videnovic, MD, MS of Harvard Medical School and Massachusetts General Hospital, where he is Chief of the Division of Sleep Medicine. The hospital is a Parkinson’s Foundation Center of Excellence. In this episode, he explains how the study was done, its findings, and how AI may be useful for diagnosis of PD, gauging its severity, following its progression, and possibly, in the future, assessing risk of PD before its clinical diagnosis.

“Off” episodes can become a troubling aspect of Parkinson’s disease (PD), especially as the disease progresses. These are periods in the day when the effect of levodopa medication wears off, either suddenly or gradually, with a return of motor or non-motor symptoms. The good news is that there are several ways to try to minimize “off” episodes, including medication timing, medication adjustments, and add-on medications. In this podcast episode, Dr. George Kannarkat, a movement disorders fellow at the University of Pennsylvania in Philadelphia, a Parkinson’s Foundation Center of Excellence, discusses “off” episodes, their causes, strategies that people can use today to minimize them, and what new technologies are here or coming along to help lessen them.