Episode 137: CEO John Lehr Offers Broad Insight into the Parkinson's Foundation
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.
Released: September 20, 2022
John L. Lehr leads the Parkinson's Foundation as president and chief executive officer. John guides the overall Foundation’s strategy of mission programs and resources that make life better for people with Parkinson’s. He works to expand the Foundation’s reach, research initiatives and presence, while working to improve health equity among the Parkinson’s community and the underserved. He ensures that all Foundation programs and resources aim to improve care and advance research toward a cure.
Adverse effects, often called side effects, are a common phenomenon that accompanies the use of many drugs, including ones used to treat the symptoms of Parkinson’s disease (PD). Any treatment is a balance between the desired effects of a drug and undesirable ones, so how to best ease symptoms while making the treatment tolerable. Specific to classes of drugs used for PD, some of the side effects may be drowsiness, insomnia, light headedness, hallucinations, cognitive impairment, swelling of the legs, dry mouth, weight gain, compulsive behavior, and others. These are just possibilities, and a good working relationship with a PD health care team can help avoid many of them. Beyond the PD team, keeping other health care providers informed is advisable since drug interactions can occur, so all practitioners (including dentists) should be aware of all medications that a person is taking, prescription, over-the-counter and even supplements.
In this podcast episode, neurologist Dr. Irene Richard of the University of Rochester Medical Center discusses several of the various drugs and drug classes used to treat the symptoms of PD in relation to the adverse effects that can accompany them. She offers insights into several ways to avoid or minimize adverse effects of drug therapy, what clinicians should tell people starting a new drug, and what people should ask as well as be aware of and report back.
Released: December 29, 2020
Dr. Irene H. Richard is Professor of Neurology with a secondary appointment in Psychiatry at the University of Rochester in Rochester, NY. After graduating from Cornell University in 1987 and receiving her MD from the Yale University School of Medicine in1991, Dr. Richard completed neurology residency at the University of Rochester in 1995, followed by NIH-funded fellowship training in Movement Disorders and Experimental Therapeutics in 1997. She joined the faculty of the University of Rochester in 1997. Dr. Richard provides neurological care for patients with Parkinson’s disease and related conditions and her clinical research program focuses on the psychiatric aspects of these illnesses. More recently, with support from a PF community grant, she has also been working with her team on efforts to optimize hospitalization for patients with PD. She is the author of numerous scientific articles, editorials and book chapters and has been the recipient of career development awards and research grants, including one from NIH to lead a multi-center clinical trial evaluating the treatment of depression in PD. Dr. Richard is Director of the University of Rochester’s Movement Disorders Fellowship Program, LBDA Research Center of Excellence, and Parkinson Foundation Center of Excellence.
A team approach to Parkinson’s disease (PD) often results in better outcomes and quality of life for people with PD and their care partners. Members of the team have specific expertise in evaluating and fulfilling the needs of the person and family. One of those members is the social worker, and ideally, one who specializes in chronic or progressive diseases. He or she can assess how the person is functioning in their environment, their emotional state, and their needs. Once the assessment is done, the social worker can help meet those needs by directing people to the most appropriate resources, or in the case of Licensed Clinical Social Workers (LCSW’s), (or the equivalent in some states, Licensed Independent Social Workers), by directly providing therapy in the areas of mental and emotional health. Social workers also can function as a “point person” or starting point for people with PD and care partners who may know what they need but not where to find it or how to access it.
In this podcast episode, Elizabeth Delaney, LCSW, social worker in Columbia University’s movement disorders division and the center coordinator of the Parkinson’s Foundation Center of Excellence at Columbia, describes the role of social workers as part of a Parkinson’s health care team, and she offers suggestions on how people with PD can find a social worker experienced in working with people with progressive diseases.
Released: December 15, 2020
Elizabeth Delaney, LMSW, joined the Columbia University Irving Medical Center (CUIMC) Movement Disorders team as a Licensed Social Worker and Center of Excellence Coordinator in June 2017. She got her start in the field of movement disorders during her second year of social work internship at New York Presbyterian Brooklyn Methodist Hospital Neuroscience Department, working within the outpatient Parkinson’s’ center. She has particular interest in mental health, health disparities, and community education. She completed the Allied Team Training for Parkinson’s in 2017 and continues to grow as a movement disorders mental health clinician. Elizabeth completed her Bachelor’s degree in psychology at Pace University and earned her Master’s degree in Social work from Columbia University.
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
Dr. Mark Groves is psychiatrist specializing in the psychiatric management of Parkinson’s disease and other movement disorders and is an Assistant Clinical Professor of Psychiatry and Neurology at the Icahn School of Medicine at Mount Sinai in New York City. For the last 17 years, he has been the consulting psychiatrist to the Movement Disorder Division and Parkinson’s Foundation Center of Excellence at Mount Sinai Beth Israel. Dr. Groves’s clinical interest in Parkinson’s disease was initially sparked in his early college years when he had 2 Parkinson’s Disease Foundation Summer research fellowships and worked with clinical researchers and patients at Columbia University.
A graduate of Brown University, Dr. Groves attended medical school at the University of California, San Francisco and completed his residency in Psychiatry and a fellowship in Consultation-Liaison Psychiatry at Columbia University/New York State Psychiatric Institute. He is board certified in Psychiatry, with subspecialty certifications in Psychosomatic Medicine and Neuropsychiatry/Behavioral Neurology.
Dr. Groves has published a number of papers and book chapters on Psychological Reactions to Illness, and clinical aspects of Parkinson’s disease and Huntington’s disease, but his primary focus is in the direct clinical work with patients, caregivers and multidisciplinary colleagues treating the psychological and non-motor symptoms of patients with movement disorders with psychotherapy, medications and other treatments. He continues to learn from the privileged opportunity of immersing himself in the inner experiences of his patients and partnering in care with other disciplines.
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
Lance M. Wilson, MSS, LSW, C-SWHC, ASW-G is a Neuroscience Medical Social Worker who works with patients, families, and care partners impacted by the diagnoses of movement disorders, such as Parkinson's Disease.
Lance is a Licensed Social Worker (LSW) in the State of Pennsylvania. Lance holds a C-SWHC (Certified Social Worker in Health Care) and ASW-G (Advanced Social Worker in Gerontology) both specialty certifications from the National Association of Social Workers.
Lance holds a bachelor’s degree in science (BS) in Human Services from Lincoln University of PA and a master’s degree in Social Service (MSS) in Clinical Social Work from Bryn Mawr College’s Graduate School of Social Work and Social Research. Currently, Lance is pursuing his clinical supervision for his licensure in clinical social work (LCSW) and is currently a PhD student of Social Work at Widener University’s College of Health & Human Services.
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
Elsa Baena, PhD, es neuropsicóloga en el departamento de neuropsicología clínica y en la unidad de neurorrehabilitación intrahospitalaria del Barrow Neurological Institute.
La experiencia de la Dra. Baena incluye la evaluación neuropsicológica y rehabilitación de individuos con una variedad de diagnósticos neurológicos, incluyendo condiciones neurodegenerativas, lesiones cerebrales adquiridas, enfermedades cardiovasculares y tumores cerebrales. También realiza evaluaciones pre y postquirúrgicas para la estimulación cerebral profunda (ECP o DBS, por sus siglas en inglés) y la cirugía de epilepsia. Domina el inglés y el español y es miembro de la Hispanic Neuropsychological Society, la National Latinx Psychological Association, la American Academy of Clinical Neuropsychology, la International Neuropsychological Society y la National Academy of Neuropsychology.
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The landscape of Parkinson’s treatment is constantly evolving, with exciting advances in medications, therapies, and technologies aimed at improving quality of life and symptom management. In this webinar, we’ll explore the latest evidence-based treatments available to veterans living with Parkinson’s, including emerging therapies and clinical trial opportunities. Learn how to access treatments through the VA system and understand which options may be right for you or your loved one. This session is designed to empower veterans and care partners with up-to-date knowledge and tools for informed decision-making.
Speakers
Dr. Pavan Vaswani
Associate Program Director, Movement Disorders Fellowship, Department of neurology, University of Pennsylvania
Attending Neurologist, Corporal Michael J. Crescenz Philadelphia VA Medical Center, University of Pennsylvania
Dr. George Kannarkat
Assistant Professor of Neurology, Hospital of the University of Pennsylvania
Neurology Consultant, Penn Neurology, Grandview Hospital, Sellersville, PA
There is no charge to attend, but registration is required. This program is open to people with Parkinson's, their family, friends, and the community.
The Parkinson's Foundation is proud to partner with U.S. Department of Veterans Affairs to improve the health, well-being and quality of life for veterans with PD.
Parkinson’s Champions athletes raise funds and awareness for the Parkinson’s Foundation while competing in some of the world’s most popular races. We run and ride because we know the power of movement for people living with Parkinson's.
Ask PAM: The New Parkinson’s Foundation AI Chat Tool
🧠 What will you learn in this article?
This article introduces the new Parkinson’s Foundation AI Chat Tool, Ask PAM (Parkinson’s Assistance Messenger) and how it works. It highlights:
What types of Parkinson’s questions you can ask PAM.
How PAM protects your privacy and provides accurate information.
How PAM connects you with the Parkinson’s Foundation Helpline.
How to start using the PAM AI chat tool on Parkinson.org.
Ask PAM (Parkinson’s Assistance Messenger)is an AI-powered chat tool from the Parkinson’s Foundation that provides trusted, evidence-based answers about Parkinson’s disease (PD) — anytime, anywhere.
Living with Parkinson’s disease often brings questions about symptoms, treatments, caregiving, research or what to do after a diagnosis. Now, getting reliable information is faster and easier than ever.
PAM was created to give people with Parkinson’s and their caregivers instant access to accurate, Parkinson’s Foundation-rooted information, 24 hours a day, seven days a week.
What is PAM?
PAM stands for Parkinson’s Assistance Messenger. It uses artificial intelligence (AI) to provide answers based on trusted Parkinson’s Foundation resources.
AI chat platforms — like ChatGPT and now PAM — are advanced software applications that use AI and machine learning to simulate human conversation. These platforms do not follow pre-programmed scripts, but instead understand context, intent, and learn from real interactions to provide more accurate, personalized responses.
PAM is designed to deliver clear, reliable information about Parkinson’s disease any time of day. PAM can support people living with PD, care partners and anyone else affected by PD. While PAM provides helpful educational information, it does not replace medical advice from your healthcare provider.
What can I ask PAM?
You can ask PAM questions anything about Parkinson’s disease, including symptoms, diagnosis, treatment options, hospital safety, caregiving support, research and more. You can type full questions or sentences, such as:
I was just diagnosed with Parkinson’s — what should I do next?
Does exercise help manage Parkinson’s symptoms?
What should I know if I have PD and need to go to the hospital?
How can I support my parent who has Parkinson’s?
Is Parkinson’s genetic? Should I consider genetic testing?
Yes. PAM is secure and confidential. If you choose to submit your contact information for follow-up through your conversation with PAM, it will be securely shared with our Helpline team so we can better support you. PAM does not store your personal health information beyond what is needed to respond to your request.
How is PAM different from the Parkinson’s Foundation Helpline?
PAM is always available to provide instant answers online, whenever you need them. The Parkinson’s Foundation Helpline connects you with information specialists who offer personalized guidance during business hours.
Reach out to the Helpline for:
Answers to your PD questions: PD diagnosis, treatment, daily living, caregiver concerns, research, clinical trials, advanced Parkinson’s and more.
Referrals to health professionals and community resources for local support.
Customized information: weprovidedigital or print versions of our resources including books, facts sheets and links to educational and local programs.
Resources for anyone in the PD community, as well to those who provide care and services.
Both services are here for you — choose the option that works best for your needs. If you would like to speak with someone directly, contact the Parkinson’s Foundation Helpline at 1-800-4PD-INFO (1-800-473-4636) or Helpline@Parkinson.org.
Why launch a dedicated Parkinson’s AI chat tool?
The Parkinson’s Foundation launched an AI chat tool to expand support for people to access anytime, anywhere. Each stage of Parkinson’s brings new questions — an AI-powered tool can provide immediate, reliable answers in the moment.
By complementing our Helpline, PAM reflects the Foundation’s commitment to making information accessible. Getting answers to Parkinson’s questions empowers people with PD and care partners to advocate for better care and live better with Parkinson’s.
Our AI Assistant provides users with general information and support related to Parkinson’s disease and the Foundation. The information provided by the Foundation’s AI Assistant is for general educational purposes only and must never be relied upon to make any decision related to the medical or health care of any person. It is not medical advice and is not intended to replace advice from any qualified healthcare provider. We disclaim any liability related to the AI Assistant and do not guarantee that it is up to date, complete, completely accurate, or applicable to any individual person’s circumstances. The Foundation’s AI Assistant operates based on the information you voluntarily provide during your conversation with it. We may retain information you provide to our AI Assistant and use it to improve the service or other Foundation activities. We may share the information you provide with our third party service providers who assist the Foundation in improving its services and other activities. Except as noted in this section, we don’t use or disclose any information that you provide via the Foundation’s AI Assistant.
Aprenda acerca de las manifestaciones no motoras más comunes de la enfermedad de Parkinson, desde los signos tempranos hasta las etapas avanzadas y explore estrategias de tratamientos para manejar los síntomas no motores.
10 a.m. hora del Pacífico (Los Ángeles) 11 a.m. hora de la Montaña (Colorado, Phoenix y Nuevo México) 12 p.m. hora del Centro (Texas y Ciudad de México) 1 p.m. hora del Este (Nueva York , Peru y Colombia) 2 p.m. hora de Venezuela 3 p.m. hora de Chile y Argentina 7 p.m. hora de España
*Por favor, verifica su zonas horarias.*
Presentadora
Dra. Laura Pesántez Pacheco
Neuróloga
Profesora asistente de neurología
University of Utah Health (Centro de Excelencia)
Parkinson’s Champions athletes raise funds and awareness for the Parkinson’s Foundation while competing in some of the world’s most popular races. We run and ride because we know the power of movement for people living with Parkinson's.
Las alteraciones del sueño son algunos de los síntomas más comunes y disruptivos de la enfermedad de Parkinson (EP) y con frecuencia afectan tanto a las personas que viven con la EP como a sus aliados en el cuidado. Este webinar se centrará en tres desafíos nocturnos frecuentes: el síndrome de piernas inquietas (SPI), el trastorno de conducta del sueño REM (TCSR) y el insomnio. Los participantes obtendrán información acerca de las causas y los síntomas de estos trastornos del sueño, junto con estrategias prácticas y recursos para manejarlos mejor y mejorar la calidad de vida.
10 a.m. hora del Pacífico (Los Ángeles) 11 a.m. hora de la Montaña (Colorado, Phoenix y Nuevo México) 12 p.m. hora del Centro (Texas y Ciudad de México) 1 p.m. hora del Este (Nueva York , Peru y Colombia) 2 p.m. hora de Venezuela 3 p.m. hora de Chile y Argentina 7 p.m. hora de España
*Por favor, verifica su zonas horarias.*
Presentador
Dr. Alberto R. Ramos, MS, FAASM, FAAN, FANA
Profesor de neurología clínica
Director de investigaciones, Programa de trastornos del sueño
Investigador principal: SANAR | SANAR Lab (sanarbrain.com)
Departamento de Neurología
University of Miami Miller School of Medicine
University of Miami Health System (Centro de Excelencia)
Parkinson’s Champions athletes raise funds and awareness for the Parkinson’s Foundation while competing in some of the world’s most popular races. We run and ride because we know the power of movement for people living with Parkinson's.