Episode 7: Genetics as a Guide to Neuroprotection in Parkinson’s Disease
For decades, most people with Parkinson’s have been able to control symptoms with levodopa and other drugs. But researchers have yet to find a way to protect neurons (brain cells) to slow down or stop progression of Parkinson’s. Dr. David K. Simon discusses how modern genetics can be a guide to developing new drugs that might preserve nerve cells and – ultimately – keep Parkinson’s from progressing.
Advances in genetics have opened new windows on possible ways to look at the underlying causes of Parkinson’s (and other) diseases. But what is a gene, anyway? Genes are the basic units of heredity. They contain the instructions for making proteins, which do the work within our cells and bodies. There are several genes associated with Parkinson’s. The most common are LRRK2 and GBA. For more information on Parkinson’s genetics, and genetics in general, check out Genetics Home Reference.
Another concept mentioned in the episode that might be new to you is “biomarker.” Biomarkers, short for biological markers, are characteristics of the body that you can measure. They are important to medicine in general and to drug development in particular. Biomarkers tell us how the body is doing and can help identify disease risk or disease progression.
Dr. Simon earned MD and PhD degrees from Washington University in St. Louis and completed the Harvard-Longwood Neurology Residency in Boston, followed by a Movement Disorders Fellowship at Massachusetts General Hospital. He then joined the faculty at Beth Israel Deaconess Medical Center (BIDMC) and Harvard Medical School, where he is now a Professor of Neurology. He is the Chief of the Division of Movement Disorders at BIDMC and Director of the Parkinson’s Foundation Center of Excellence at BIDMC.
Dr. Simon is involved in clinical studies as well as laboratory research to study agents that may have neuroprotective effects in Parkinson’s disease. He was a recipient of the George C. Cotzias Award from the American Parkinson Disease Association and has received additional research funding from the American Federation for Aging Research, Parkinson's Foundation, Michael J. Fox Foundation, and two institutes of the National Institutes of Health (NIH) – the National Institute on Aging and the National Institute of Neurological Disorders and Stroke (NINDS).
Dr. Simon completed a four-year term as a member of the NIH Molecular Neurogenetics study section and currently serves on the NINDS Biospecimen Review Access Committee (PD-BRAC). He is on the Editorial Board for Annals of Neurology. He is a member of the Cure Parkinson Trust’s Linked Clinical Trials Committee and is on the Scientific Advisory Board for the Weston Brain Institute. He also has served as Chair of the Scientific Review Committee of the Parkinson’s Study Group (PSG) and currently is an elected member of the PSG Executive Committee.
Episode 140: What to Do When the Next Medical Appointment is Months Away
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.
Released: November 29, 2022
Heather Russell, RN, has 26 years of experience as a Neuro nurse. After 18 years of shift work, which included working at a children’s hospital and in an Epilepsy unit, she saw the opportunity for her current position as Movement Disorder Clinic Nurse for Dr. Mandar Jog and started her role at London Health Sciences Centre in 2015. Currently, her focus is on patient care and providing information on Advanced or Device Aided Therapies available. Heather is the Coordinator of the Parkinson’s Foundation Center of Excellence at the London Health Sciences Centre in London, Ontario, Canada and a CANN Member.
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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There are many non-motor challenges associated with Parkinson's disease that may not always by easy to discuss. With a focus on cognition and speech, this program will provide strategies for coping and talking about it with healthcare providers or loved ones.
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.
Parkinson’s Champions athletes raise funds and awareness for the Parkinson’s Foundation while competing in some of the world’s most popular races. Every step we take brings us closer to a future without Parkinson’s disease, because Parkinson’s isn’t a sprint, it’s a marathon.
In January 2025, the Parkinson’s Foundation asked people living with Parkinson’s disease (PD) and those impacted by it: “What matters most to you?”
The results of our 2025 State of the Community Survey provide valuable feedback to guide Parkinson’s Foundation initiatives, goals and priorities. These results will help us focus on the most important issues for people with PD, their families and anyone impacted by PD.
The survey, available in English and Spanish, was shaped with input from four people living with PD to help ensure the questions reflected the community’s voices.
Below, we highlight your top concerns based on survey responses:
1. Top concerns about PD include symptoms, planning for the future and medications.
Survey participants shared their top concerns about Parkinson’s: movement symptoms, non-movement symptoms, planning for the future and medications. These topics will guide us as we develop educational materials and resources that are meaningful and relevant to the PD community.
Key Takeaway: Nearly half (42%) of participants reported movement and non-movement symptoms as top concerns.
We recognize that the PD community’s priorities may change over time, so we will continue to create and update our educational materials and resources to meet their evolving needs. Learn how to recognize common movement and non-movement symptoms of Parkinson’s, and manage them using different treatment options.
2. Most participants spent 15-30 minutes talking directly with their PD doctor.
On average, survey participants said they spent 15-30 minutes talking directly with their doctor during an appointment. Bringing a list of questions and concerns can help optimize your time during the visit.
Key Takeaways:
57% spend 15-30 minutes directly talking to their PD doctor during a visit.
74% bring a list of topics to discuss.
23% reported receiving emergency care or being hospitalized in 2024.
We understand that medical appointments can feel overwhelming, so we want to equip our PD community with tools to feel empowered to advocate for themselves and their loved ones during a visit. Check out our Hospital Safety Guide to help prepare for and navigate a hospital stay, and learn how to make the most of your Parkinson’s care.
3. Participation in PD research and PD GENEration: Mapping the Future of Parkinson’s Disease.
Research plays an essential role in understanding the causes of PD, developing new treatments, improving care, and ultimately finding a cure. However, many survey participants shared that they have not yet taken part in a PD clinical trial or research study.
Key Takeaway:72% have not participated in a PD clinical trial or research study.
“The only path to new drugs for Parkinson’s is through clinical trials — and the crucial element needed to power those trials is the person with Parkinson’s. The more people with PD who are willing to engage in clinical trials, the faster we can move towards new treatments.” - James Beck, PhD, Parkinson’s Foundation Chief Scientific Officer
PD GENEration: Mapping the Future of Parkinson’s Disease, is our global research study that offers genetic testing and counseling for people with Parkinson’s. Although many survey participants said they have not taken part in a PD research study, almost half have heard about PD GENEration. Of those, 44% reported participating in the study.
Key Takeaways:
49% have heard about PD GENEration.
44% have participated in the study.
We know there is still work to do in educating the community about recognizing research studies, including PD GENEration, and understanding the benefits of participating in research.
These survey findings will guide our efforts to offer more education and create opportunities for people to learn about and take part in research. Get involved in Parkinson’s research today. Visit our Join A Study page or enroll in PD GENEration today.
Next Steps
The Parkinson’s Foundation remains committed to listening and responding to the needs and priorities of the Parkinson’s community. We will continue our mission to make life better for anyone affected by PD.
We acknowledge that survey responses may not reflect the opinions or experiences of everyone in the PD community. We are building on our commitment to making resources and information accessible to all people living with PD by gathering feedback across multiple platforms. Explore more Parkinson’s Foundation survey findings on our Survey Data page.
Resources Designed to Help
Explore the Parkinson’s Foundation most popular resources:
