Substantial Matters: Life & Science Of Parkinsons

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 t

“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.

La visión es uno de los sentidos que tenemos que está conectado directamente con el sistema nervioso central. Cuando hay alguna enfermedad neurológica o algún problema que afecta esta área del cerebro, podemos esperar cambios en la visión.   En este episodio, hablamos con el doctor Juan Ramírez-Castañeda, profesor asociado de neurología en la University of Texas at San Antonio y director del programa de la enfermedad de Parkinson y otros trastornos del movimiento, acerca de estos cambios en la vista relacionados con el Parkinson.   El doctor Ramírez-Castañeda explica cuáles son los síntomas visuales más comunes para las personas con Parkinson, como visión doble, ojos resecos, problemas con la percepción de profundidad y alucinaciones visuales y cómo pueden tratarse los cambios en la visión.

With Parkinson’s disease (PD), it’s essential to know where to find a movement disorder neurologist, a physical or occupational therapist, social services to help with daily activities, and agencies that can advise on elder issues. When you don’t know that certain services even exist, looking for them is impossible. This is where the Parkinson’s Foundation Helpline can be an essential resource. Helpline staff have broad knowledge about what services may be appropriate to address certain problems, and they can direct callers to these services.   One social worker has described himself like the Yellow Pages. He cannot do everything for his clients, but he acts like a directory of resources that can help them. So, too, is the Parkinson’s Foundation Helpline a valuable compendium of services for many of the needs of people with PD. In this episode, Social Worker Amanda Janicke, LCSW, an information specialist on the Parkinson’s Foundation Helpline, gives insight into what the Helpline can provide, and she prov

An early Parkinson’s diagnosis is the first step to getting Parkinson’s symptoms under control and living well with Parkinson’s. Getting a PD diagnosis is also one of the first obstacles many people in the Black PD community experience.   Research has shown racial disparities in the diagnosis and treatment of Parkinson’s – finding that Black people with PD are diagnosed at a later disease stage than white people and are less likely to be diagnosed compared to other racial and ethnic groups. These differences may be due to Black patients being historically excluded from research and to a range of health disparities, which cause them to systemically experience decreased access to resources and care due to social, economic and environmental disadvantages.   Working with specialists who understand and treat Parkinson’s can help you better manage your symptoms and reduce complications. Since people in the Black community are often less likely to see a PD specialist, awareness of PD in Black communities is ess

Parkinson’s disease (PD) depression may be a biological part of the disease itself, resulting from PD-related changes in brain chemistry. Untreated depression and other mood disorders can have a greater impact on well-being than even common motor symptoms.   Depression affects at least 50 percent of people with PD sometime in the course of their disease, but it is often under-recognized and, therefore, under-treated, even though effective treatments exist, both pharmacologic and nonpharmacologic. Treating depression can be a significant way to improve quality of life.   Veronica Bruno, MD, MPH, a neurologist specializing in movement disorders at the University of Calgary in Alberta, Canada, a Parkinson’s Foundation Center of Excellence, discusses depression, the problem of under-diagnosis, and the benefits of recognition and treatment.

Parkinson’s disease (PD) affects several automatically regulated bodily functions, such as digestion, bowel activity, sweating, and blood pressure control, together known as autonomic functions. Low blood pressure, or hypotension, is common in PD, and high blood pressure (hypertension) can also occur. They may be a result of the disease itself or be caused by some of the medications to treat it. Hypotension, in particular, can be dangerous, leading to dizziness, fainting, falls, and fractures.   Up to 60% of people with PD may experience orthostatic hypotension at some point, which is a drop in blood pressure within three minutes of changing to a more upright position, that is, from sitting to standing or from a lying position to sitting or standing.   In this episode, Jeni Bednarek, RN, BSN, ACRP-CP, nurse team coordinator and associate director of education of the Parkinson Center of Oregon in the Parkinson’s Center and Movement Disorders Program of the Oregon Health and Science University in Portland, a Pa

Researchers are accumulating evidence about how the environment affects our health and our diseases – both our internal and external environments. A significant part of our internal environment is the gut microbiome, that is, the bacteria, fungi, and viruses that naturally inhabit our intestinal tracts. The external environment is everything around us that we eat, inhale, or come into contact with, including industrial chemicals and pesticides.   Studies have shown that people with Parkinson’s disease (PD) harbor distinct gut microbiomes. Environmental exposures and genetic factors can affect the composition of the microbiome. Exposure to pesticides is a leading environmental risk for many neurological diseases, including PD. Tim Sampson, PhD, a cell biologist at Emory University in Atlanta, Georgia, a Parkinson’s Foundation Center of Excellence, received one of the Foundation’s Stanley Fahn Junior Faculty Awards to study how genetics and Parkinson’s-linked pesticides affect the gut microbiome. The aim is to

Adult children of a parent with Parkinson’s disease (PD) often want to help their parent but do not know how to begin. If they get involved early, they can detect changes that need to be addressed later on. A good first step is learning about the disease, its symptoms, treatment, and course. From there, they may want to become an active part of the support team that each person with PD should have from the time of diagnosis. Adult children can help schedule doctor’s appointments; attend them with their parent, navigate insurance and other financial concerns, and keep their parent moving and socially involved by engaging in sports and activities with them. This all depends on the parent’s willingness to have their children help out with some aspects of their lives.   In this episode, Social Worker Kelly Arney, MSSW, outreach coordinator for the Parkinson’s Foundation Center of Excellence at Vanderbilt University Medical Center in Nashville, has several good pieces of advice for different situations, including

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.

Medical problems often do not follow a schedule, and it can be frustrating to get them addressed when the next doctor appointment is weeks or months away. It’s important to have a plan about what to do for support between clinic appointments. A good first step is to discuss the issue with your health care team and to arrange to have a designated person or point of contact should such a situation arise. Heather Russell, RN, Coordinator of the Parkinson’s Foundation Center of Excellence at the London Health Sciences Centre in London, Ontario, Canada, is that person for her clinic. In this episode, she describes how she helps her patients when they have a medical problem related to their Parkinson’s disease and their next scheduled clinic visit is some time away.

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 ac

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. 

Join community members from across the country for this virtual experience that allows you to move for Parkinson’s from wherever you are! This program will help you get motivated and kick off your 60 minute walk. Remember, you can walk, run, hike your favorite route, or simply just listen to the Moving Day at Home program! We encourage everyone to share photos of their experience by posting to your social media page with the hashtag #MovingDayatHome.   Join us for the entire program by accessing our Spotify playlist: https://open.spotify.com/playlist/0n6HRIvfZgoPjJfSoc57aW?si=d49f0a3fd6b54dbe\

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.

This episode explores parkinsonism, a group of conditions with symptoms similar to those of Parkinson’s disease, itself a neurological degenerative brain disorder resulting from neurons in the brain failing to make enough dopamine. It is characterized by a loss of motor control, including stiffness, slow movements, resting tremors, and postural instability. Plus, non-motor symptoms of depression, loss of the sense of smell, gastric problems, mood and cognitive changes are common.   Parkinsonism is a general term for a group of neurological conditions involving movement problems similar to those seen in Parkinson’s disease. A variety of underlying causes may lead to parkinsonism, including medications that affect dopamine levels in the brain or the action of dopamine in the brain. Examples are antipsychotic medications used in psychiatry, calcium channel blockers for blood pressure control, and stimulants like amphetamines and cocaine. Even though stopping the medications may result in them being cleared from