Substantial Matters: Life & Science Of Parkinsons

Past podcasts have given glimpses into the broad range of programs and initiatives that the Parkinson’s Foundation has developed and supports. But to give a better understanding of the Foundation’s mission, its operation, reach, and funding, we spoke with John Lehr, its president and CEO. He discussed the reasons for the merger of the National Parkinson Foundation and the Parkinson’s Disease Foundation to form today’s Parkinson’s Foundation, what the new organization has accomplished, and its plans for the future.

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 Profe

People often view Parkinson’s disease (PD) in terms of its motor symptoms, including slow movements, tremors, and stiffness. Often, these symptoms can be controlled with levodopa or other dopaminergic drugs. But just as troubling or more so to the person with PD are the non-motor symptoms of nausea, constipation, low blood pressure, mood disturbances, sleep problems, and more. In this episode, we focus on feeling nausea with Parkinson’s disease in an interview with Andrew Feigin, MD, Professor of Neurology at New York University Langone Health and director of the Fresco Institute for Parkinson’s and Movement Disorders in New York City, a Parkinson’s Foundation Center of Excellence. He discusses the causes of nausea, both from PD itself and from medication, and what people can do to help lessen or prevent it.

As with many medical conditions, people with Parkinson’s disease (PD) may experience disparities in access to care, in diagnosis, treatments, and ancillary care. These disparities may be based on age, gender, race, financial situation, language barriers, and geographic location, among other factors. Dr. Lynda Nwabuobi, now a movement disorders specialist at New York-Presbyterian/Weill Cornell Parkinson’s Disease and Movement Disorders Institute in New York City, received her specialized training at Columbia University, supported by a Parkinson’s Foundation Movement Disorders Fellowship.   During her training, she noticed that women with PD who were home-bound were more likely than men to be alone and to have less access to a neurologist. She also recognized disparities in the care between the majority white population of people with PD seen at the main hospital clinic of New York University (NYU) compared to the more racially diverse, multicultural community of people seen at NYU’s public Bellevue Hospital ne

Many people with Parkinson’s disease (PD) continue to work, socialize, and enjoy life, making accommodations as necessary to fit the disease into their lifestyles. And while no one would choose to have PD, some people have even found or created benefits of having it. One of them is Barry Blaustein, an award-winning Hollywood writer, director, and producer, who wrote several of Eddie Murphy’s movies and developed several of his Saturday Night Live characters, writing many of Murphy’s skits with his writing partner. When we spoke, he had been living with PD for five years, working during that time in Hollywood and teaching screen writing at the university level. In this episode, he describes how he has dealt with his disease, continued to work, and maintained an upbeat attitude.

Just as people in the general population have to contend with various unrelated medical conditions, so may people with Parkinson’s disease (PD). Such conditions are termed “comorbidities,” that is, diseases or conditions occurring along with, in this case, PD. Examples are cardiovascular disease, strokes, arthritis, diabetes, asthma, cancer, cataracts, other diseases of aging, as well as those that can occur at any stage of life. An important consideration is to determine which health professional would be best at addressing them and who coordinates the care. A movement disorders specialist may feel comfortable treating a general neurological condition in addition to PD, but in this podcast episode, movement disorders neurologist Ashley Rawls, MD, MS of the University of Florida College of Medicine in Gainesville, a Parkinson’s Foundation Center of Excellence, emphasizes that one’s time with her is best used addressing the person’s PD, while comorbidities are most appropriately managed by specialists in those

La distonía es un trastorno del movimiento que causa contracciones involuntarias de los músculos. Estas contracciones llevan a posturas anormales de partes del cuerpo y a veces a movimientos repetitivos.   En este episodio, hablamos con la doctora Marta San Luciano, Profesora Asociada de Neurología en la University of California San Francisco, acerca de la definición y el manejo de la distonía. La doctora San Luciano nos explica que la distonía es un síntoma común de la enfermedad de Parkinson que puede aparecer al principio o a lo largo de la enfermedad.   Aprendemos que la distonía generalmente ocurre en los periodos “off”, cuando el cuerpo tiene poco medicamento para el Parkinson, pero también puede aparecer en el medio de una dosis, en un periodo “on”.   Además de las terapias que existen para controlar la distonía, como los medicamentos y la fisioterapia, la doctora San Luciano comparte ejemplos de actividades diarias que pueden ayudar a manejar la distonía.

Forty percent of people living with Parkinson’s disease (PD) are women, but compared to men, they have a longer time to diagnosis, less access to neurologist care, and are underrepresented in research studies. Although PD presents special considerations for women, they are, overall, treated the same as men. Some of the differences are body weight, drug metabolism, symptoms, monthly hormone cycles, hormonal changes across different stages of life, pregnancy, and family and other care giving responsibilities and occupational demands, all of which can affect their disease and its treatment. However, these special needs have largely been underrecognized and under-addressed by the medical profession.    Six women health care professionals, three of whom have PD, authored a paper titled “Unmet Needs of Women Living with Parkinson's Disease: Gaps and Controversies” to bring these issues to the fore, identify current knowledge, gaps, and possible strategies to meet the neglected needs of women with PD.   Some of thes

Dyskinesia is a condition involving erratic, uncontrollable muscle movements such as twitches, jerks, twisting, or writhing of the face, arms, legs, or trunk. It can be a complication after long-term use of levodopa to treat Parkinson’s disease. Dyskinesias can be mild, or they may be severe enough to interfere with normal functioning.   Basic laboratory research has revealed some of the changes in the brain after long-term exposure to levodopa. In this episode, Kathy Steece-Collier, PhD, a professor in the Department of Translational Neuroscience in the Michigan State University College of Human Medicine in Grand Rapids, discusses her research into the biologic mechanisms of levodopa-induced dyskinesias and a possible future prevention and treatment for them.   Funded by an International Research Grant from the Parkinson’s Foundation, she delineated the role of calcium channels, which allow calcium to enter nerve cells in the brain, in the development of levodopa-induced dyskinesias. Based on those findings,

En los últimos años, se han publicado varios estudios que sugieren que empezar la fisioterapia en las etapas tempranas de la enfermedad de Parkinson puede tener beneficios neuro-protectores, lo que significa que ayuda a mantener el cerebro más saludable. En el caso de las personas con Parkinson, la fisioterapia puede ayudar con el equilibrio, con la marcha y para mantener buena fuerza.   En este episodio, hablamos con Ana Sanchez Junkin, doctora en fisioterapia con especialidad clínica en neurología. Ana trabaja clínicamente en el hospital Beth Israel Deaconess Medical Center en Massachusetts, Centro de Excelencia de la Parkinson’s Foundation. Además, trabaja con estudiantes como instructora clínica en el MGH Institute of Health Professions.   Ana comenta que es recomendable que las personas con Parkinson vayan a su primera evaluación con un fisioterapeuta tan pronto como sean diagnosticados. Esto ayuda al fisioterapeuta a identificar problemas antes de que empiecen a impactar funcionalmente a la persona.   A

Regular exercise in its various forms is one of the most important things that people with Parkinson’s disease (PD) can do for themselves. It can promote aerobic conditioning, strength, balance, and flexibility and help slow the decline in mobility while improving quality of life.   Findings from the Parkinson’s Foundation Parkinson’s Outcome Project, the largest ever clinical study of PD, suggest that people with PD engage in at least two and a half hours of exercise each week to improve quality of life. Thus, recognizing the importance of exercise, the Parkinson's Foundation, in collaboration with the American College of Sports Medicine, has created new Parkinson's Exercise Recommendations to ensure that people with PD receive safe and effective exercise programs and instruction.   These guidelines were developed and reviewed by a panel of exercise and Parkinson’s experts who recommended the frequency, intensity, time, type, volume, and progression of exercises that are safe and effective for people with PD

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 st

Sabemos que existen otras cosas aparte de la medicina como parte del tratamiento para una persona con la enfermedad de Parkinson; por ejemplo, la actividad física, que sabemos que puede ayudar a la salud del cerebro.   En este episodio, hablamos con la doctora Giselle Petzinger, Profesora Adjunta de Neurología en la Keck School of Medicine de la University of Southern California, acerca de un estudio que llevó a cabo para comprender mejor si usar un fitbit con entrenamiento puede promover la actividad física en las mujeres hispanas con enfermedades neurológicas crónicas como el Parkinson.   Aunque muchas participantes sabían que la actividad física es importante para la salud, no sabían que también puede ayudar a la salud del cerebro. La meta del estudio fue promover la actividad física utilizando la tecnología del fitbit, entrenamiento y educación llevado a cabo en un centro comunitario.

As many people get older, they start to think about where they want to reside for the rest of their years. For many of them, that place is the home they are already in. But it is not as simple as just staying put. One must consider mobility issues, staying safe physically, nearby services, social support, transportation issues, along with present and future medical needs.   These are issues common to most people as they age, and Parkinson’s disease adds another level of considerations. Fortunately, many resources are available to help in planning for the future. In general, the topic goes under the term “Aging in Place,” which the U.S. Centers for Disease Control and Prevention defines as “the ability to live in one's own home and community safely, independently, and comfortably, regardless of age, income, or ability level.   In this episode, Rodney Harrell, Vice President for Family, Home, and Community at the AARP Public Policy Institute describes what Aging in Place should mean, misconceptions about it, ba

Among the many kinds of outreach and activities that help people with Parkinson’s disease (PD), art programs are popular and beneficial. They can provide social interaction, creativity, and movement, with the potential to enhance emotional and physical wellbeing. One program, Smile Through Art, benefited from a Community Grant from the Parkinson’s Foundation, allowing it to continue to reach people with PD and their care partners throughout the pandemic. Smile Through Art Workshops encourage creativity and movement, using art to address problems of fine motor control, rigidity, and tremors while providing cognitive stimulation. The goals are to foster confidence, mood, and optimism.   In this episode, Saba Shahid, the Chief Smile Officer and President of Creative Neurology, the company that developed the Smile Through Art program, discusses what the workshops entail, the success that they have had, and how a Community Grant from the Parkinson’s Foundation allowed the program to continue to reach people with P

Parkinson’s disease (PD) does not exclusively affect the older population. In fact, about four percent of people with PD in the United States developed the disease before age 50. This is called Young-Onset Parkinson’s disease (YOPD). While the disease in younger people resembles in many ways PD in the older age group, it presents some unique challenges, including issues with employment, sexuality, pregnancy, family life, financial planning and parenting. In this episode, the second of two on YOPD, Dr. Bart Post of Radboud University in Nijmegen, the Netherlands, a Parkinson’s Foundation Center of Excellence, focuses on some of the social and interpersonal issues, including work, family, and women’s issues. He also describes the Phase of Life Dependent Support Program that he has developed at his university to meet the special needs of people with YOPD.

En este episodio, hablamos con Sebastián Krys, productor e ingeniero argentino y ganador de 19 Latin GRAMMYs y GRAMMYs, sobre su experiencia navegando las emociones que acompañan su recorrido por el Parkinson. Desde el diagnóstico inicial hasta la etapa de aceptación, Sebastián comparte cómo navega los obstáculos diarios que acompañan al Parkinson y dónde encuentra el mayor apoyo. Entre la creatividad de su carrera, el ejercicio diario y el apoyo de sus amigos y familia, Sebastián concluye que lo más importante es levantarse cada día y vivir el mejor día posible, normalizando los cambios que resultan de la enfermedad al educarse e integrarse a la gran comunidad de apoyo del Parkinson.

Although people often think of Parkinson’s disease (PD) as one affecting the elderly, approximately one in 25 people living with PD in the United States received their diagnosis before age 50. This is known as Young-Onset Parkinson’s disease (YOPD). While it shares many motor and non-motor symptoms with typically older onset disease, it does differ in some ways, particularly in terms of speed of progression, reaction to medications, life circumstances and underlying genetic risk factors.   In this episode, the first of two on YOPD, Dr. Bart Post of Radboud University in Nijmegen, the Netherlands, a Parkinson’s Foundation Center of Excellence, describes some of the physical characteristics of YOPD. In the second episode, he will focus on some of the social and interpersonal issues, including work, family, and specifically women’s issues. He will also describe a program that his university has developed for people with YOPD.

Comprender todos los aspectos de una prueba genética – desde los positivos hasta los negativos – es un factor importante del trabajo de la consejería genética para que uno entienda y tenga una idea más clara de por qué se presentó/apareció o se manifestó una enfermedad en la familia.   En este episodio, hablamos con Priscila Delgado Hodges, asesora genética certificada y licenciada en el Departamento de Genética Médica y Molecular (MMGE) de la Facultad de Medicina de la Indiana University, acerca de la consejería genética.   Priscila explica qué es la consejería genética, qué puede esperar un paciente durante una visita y ofrece recomendaciones para personas interesadas en participar en estudios de investigación.

Stress is almost a constant in our lives and especially when coping with changing symptoms of Parkinson’s disease. Adding to the usual stresses are the pandemic with its social isolation and uncertainty of when it will be over, as well as the flood of local and international news. So we all deserve some time to focus on ourselves, and one useful technique is mindfulness meditation, in which a person focuses on being intensely aware of what they are sensing and feeling in that moment. This focus helps give insight into those senses and feelings without interpreting them or judging them. Various techniques can facilitate this practice to reduce stress, including breathing methods and guided imagery. In this episode, Crista Ellis, Community Program Manager with the Parkinson’s Foundation and a certified yoga and meditation educator, describes what mindfulness meditation is, how people can begin the practice, including the Foundation’s Mindfulness Mondays sessions, and what it can do for them.