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EVENT RESCHEDULED for Wednesday, November 13, 2024
This program is open to anyone interested in learning more. You do not have to be a resident of The Villages to participate. All are welcome!
In-person check-in and exhibitor tables open at 10 a.m. ET. Program and presentations start at 11 a.m. ET.
We will address some of the challenges of advancing PD and explore strategies to prepare for the future, including how to evolve your care plans and treatments throughout progression so you can live your best life with PD now.
There is no charge to attend, but registration is required. This program is open to people with Parkinson's, their families, friends, and the community.
Featured Speakers:
Ramon Rodriguez, MD, FAAN
Medical Director, Neurology One
Bob Fuery, BS, R. Ph.
Karita Anderson, MSW
AdventHealth | Neuroscience
Jodi Lorenze MS, CCC/SLP
Director of Rehabilitation Services
UF Health Spanish Plaines Rehabilitation Hospital
Claudia Kerzner, CAP
Senior Proof
Amy Cearley
Tri-County Caregiver Resource Center
Rose Wichmann & Joan Gardner
National Co-Director's
Community Partners in Parkinson's Care
Check-in starts at 10 a.m. ET for in-person participants
Join the Parkinson’s Foundation in person or online for the New England Chapter Parkinson’s Symposium. Hear about how ongoing research and genetics are providing clues to slowing progression, current treatments, and resources available to help you live your best life with Parkinson’s.
Speakers
Albert Hung, MD, PhD
Associate Neurologist, Neurology, Massachusetts General Hospital
Director, Parkinson's Disease Center of Excellence
Assistant Professor of Neurology, Harvard Medical School
David K. Simon, MD, PhD
Professor of Neurology, Harvard Medical School
Director, Parkinson’s Disease & Movement Disorders Center
Beth Israel Deaconess Medical Center, Parkinson’s Foundation Center of Excellence
Stephen L. Lee, MD, PhD
Co-Medical Director, Parkinson's Center, Dartmouth Hitchcock Medical Center, Parkinson’s Foundation Center of Excellence
Assistant Professor of Neurology, Geisel School of Medicine, Dartmouth
Joy Antonelle de Marcaida, MD
Medical Director, David & Rhoda Chase Family Movement Disorders Center, Hartford Hospital, Parkinson’s Foundation Comprehensive Care Center
Anna DePold Hohler, MD, FAAN
Chair of Neurology, St. Elizabeth’s Medical Center
Professor of Neurology, TUSM
Keith J. Ciccone, BS, LPN
Nurse Specialist
St. Elizabeth Medical Center
For in-person attendees: In-person check-in starts at 10 a.m. ET. Lunch will also be provided during the event.
For virtual attendees, via Zoom: The live stream starts at 11 a.m. ET
COVID SAFETY: The health and safety of our participants, sponsors, volunteers and staff are our top priority. We continue to monitor CDC recommendations and will adhere to state and local COVID guidelines in place on the event day. Adjustments will be made if necessary.
Episode 167: Exploring Carbidopa-Levodopa for Treating Parkinson’s Symptoms
Carbidopa-levodopa is considered the “gold standard treatment” for Parkinson’s disease. Levodopa works to replace levels of dopamine in the brain, thereby alleviating PD symptoms, while Carbidopa works to reduce adverse effects in the rest of the body. Although years have passed since the creation of this treatment, it is still commonly known to be an effective drug for reducing PD symptoms in a majority of people living with Parkinson’s.
In this episode, we hear from Dr. Emily Peron, PharmD and Dr. Leslie Cloud, MD from Virginia Commonwealth University*. They discuss how and why carbidopa-levodopa continues to be a standard treatment for PD, long-term use considerations, its different forms, and when to recognize the need for potential medication adjustments.
*Denotes a Parkinson's Foundation Center of Excellence
Released: March 5, 2024
Emily Peron, PharmD, MS, is Associate Professor of Geriatrics at Virginia Commonwealth University (VCU) School of Pharmacy. Among her faculty commitments, Dr. Peron practices as a clinical pharmacist and conducts research with the VCU Parkinson's and Movement Disorders Center (a Parkinson's Foundation Center of Excellence). She regularly speaks at movement disorder support groups and teaches students from pharmacy and other health professions programs about movement disorders. Dr. Peron also contributes to medication-related education materials for the Parkinson's Foundation and has served as a member of the Parkinson's Foundation Aware in Care Advisory Committee, which seeks to make hospitals safer for people with PD.
Dr. Peron earned her Doctor of Pharmacy degree from Butler University and completed two years of clinical pharmacy residency training at the Louis Stokes Cleveland VA Medical Center, specializing in geriatrics. Dr. Peron then went on to complete a two-year research fellowship and Master of Science degree in Clinical Research at the University of Pittsburgh. She is currently pursuing a PhD in Health-Related Sciences with a Concentration in Gerontology through the VCU College of Health Professions. Her dissertation will explore the experiences of loneliness and ageism among people with Parkinson's.
Dr. Cloud received her MD in 2004 from the Medical College of Georgia. She then completed her neurology residency (2008), clinical movement disorder fellowship (2009), and Master’s Degree in Clinical Research (2011) at Emory University. She joined the VCU faculty in 2011. She is currently the Medical Director of the Parkinson’s Foundation Center of Excellence at VCU.
New research reveals the complex changes happening in different cell types in the brain that are affected by Parkinson's and identifies a unique population of neurons.
A hallmark of Parkinson's disease (PD) is the death of brain cells called dopaminergic neurons in a part of the brain called the substantia nigra. For people with Parkinson’s, these neurons stop producing dopamine, which helps control the body's movements and moods. However, it’s not clear if other types of cells are also affected.
A new study published in Science Advancesidentifies a new type of neuron associated with Parkinson’s. By looking at which genes were turned on and off in hundreds of thousands of different cells in the substantia nigra, the researchers developed an “atlas of gene expression.” This research may help us better understand Parkinson’s, and possibly help guide the development of new treatments.
This study was led by the Parkinson’s Foundation 2022 Research Centers Principal Investigator Zhenyu Yue, PhD, and co-Investigators Joel Blanchard, PhD, John Crary, MD, PhD and Bin Zhang, PhD, from Icahn School of Medicine at Mount Sinai.
About the Study & Results
The researchers studied gene expression in 315,867 cells from the substantia nigra of people who did or did not have Parkinson's. Within the samples, the researchers identified various known cell types, including different types of neurons and other brain cells.
Interestingly, the scientists found a unique group of neurons that had an activated gene called RIT2, which past studies had shown is associated with Parkinson's risk. These cells lacked markers of other common cell types in the substantia nigra, indicating that they may be a newly recognized cell population.
However, in people who had advanced Parkinson’s, RIT2 expression was decreased compared to those without Parkinson’s, suggesting that reduced RIT2 expression may play a role in the development of Parkinson's. This may also indicate that the unique population of RIT2 neurons may be more vulnerable to the disease.
The team assembled their data on gene expression to create an atlas of different populations of single cells in the substantia nigra, which can be used to explain changes associated with Parkinson’s. They found distinct patterns of changes in gene expression in the cells marked by RIT2. Moreover, the team identified pathways of cell-to-cell communication that were altered in Parkinson’s.
Research Takeaways
The researchers are hopeful that this new data will be useful in future research. For example, while many dopaminergic neurons were lost due to advanced Parkinson’s by the time these samples were collected, many survived — their atlas may eventually help reveal what makes some neurons more resilient.
Help find clinical biomarkers for Parkinson’s. A PD biomarker would lead to faster and more accurate diagnosis and the ability to track PD progression. Right now, there is no single biomarker for Parkinson’s.
Highlights
A unique group of neurons in the substantia nigra is marked by an activated gene, called RIT2, which past studies have shown is associated with Parkinson's risk. These cells did not have markers of other known cell types, indicating that they had not been previously identified.
In people who had advanced Parkinson’s, RIT2 gene expression was reduced, which suggests it may play a role in the development of Parkinson's. It may also mean that the unique population of RIT2 neurons may be more vulnerable to the disease.
Data was converted into an “atlas of gene expression” that identifies a broad range of gene expression patterns within the cells of the substantia nigra.
What does this mean?
This research is a step towards better understanding the changes that occur in the substantia nigra during Parkinson’s. Knowing that there is a new population of brain neurons tied to Parkinson’s — in addition to the well-established dopaminergic neurons — will provide researchers with new targets to develop different PD medications. These neurons can also lead to the development of a new biomarker, which could be a breakthrough in PD diagnosis and progression tracking.
What do these findings mean to the people with PD right now?
While this study does not impact people with PD right now, the PD community can find hope in that researchers are still discovering more about this disease, and how it works. We can only solve a puzzle if we have all the pieces, and this new piece contributes to the overall battle to beat Parkinson’s.
People who are concerned that they may be experiencing Parkinson’s symptoms should talk to a healthcare provider.
Learn More
The Parkinson’s Foundation believes in empowering the Parkinson’s community through education. Learn more about PD and the topics in this article through our below resources, or by calling our free Helpline at 1-800-4PD-INFO (1-800-473-4636) for answers to your Parkinson’s questions.
7 Things People Newly Diagnosed with Parkinson’s Should Know
If you or your loved one has recently been diagnosed with Parkinson’s disease (PD), it is normal to feel overwhelmed. Our Newly Diagnosed guide is designed to help people with Parkinson’s and their loved ones who are beginning their PD journey.
Below we highlight seven things every newly diagnosed person should know, featuring information from our Newly Diagnosed guide.
1. You are not alone.
There are one million people living with PD in the U.S. and nearly 90,000 are newly diagnosed every year. Even if you have a relative or friend with Parkinson’s, a diagnosis may feel shocking. Know that there is a passionate PD community ready to support you, in-person and online. When you’re ready, the Parkinson’s Foundation is here with the information and resources you need.
It’s common to experience a wide range of emotions after receiving a diagnosis — relief, sadness, confusion and determination, to name a few. Take the time you need to understand what you’re feeling and reflect on what brings you joy.
Begin to educate yourself on Parkinson’s and the steps that you can take to live well. Taking control of the things you can, like staying informed, will help to minimize stress.
3. Parkinson’s symptoms affect more than movement.
Though PD is often thought of as a disease that only impacts movement, most people develop other symptoms as well. Early signs of Parkinson’s include tremor, small handwriting, loss of smell, trouble moving and trouble sleeping.
Many people with PD experience non-movement symptoms related to mental health like depression, anxiety and apathy. If you are affected by these symptoms, know that you are not alone. Prioritizing mental health is critical to overall well-being.
Consider reaching out to a loved one, a counselor or a spiritual advisor and start building your support team.
4. Every person’s experience with PD is unique.
As you start to learn more about this disease, remember that everyone’s journey is different. No two people with Parkinson’s will have the exact same symptoms or rate of progression. Begin tracking your symptoms to develop a stronger awareness of how PD impacts you and try to focus on what is most affecting you right now. You are the expert on your experience.
Physical, occupational and speech therapists can help at any stage. Talk to your doctor about building your care team, and asking for referrals for specialists who can help address symptoms that impact your daily life.
5. Make the most of your PD care appointments.
Preparing in advance of your PD care appointments will help your care team tailor treatment to your needs and goals. Come prepared with a list of current medications, notes about current symptoms including which ones have the greatest impact on your daily life and at what time of day, and a list of questions for your doctor.
Try to bring someone with you to appointments who can help take notes and ask questions. At the end of appointments, ask for clarification if something is unclear and ask for a printed copy of notes or instructions.
6. Exercise is essential to managing PD.
There are many things you can do between appointments to help manage PD. Parkinson's Foundation research shows that people with PD who start exercising earlier in their disease course for a minimum of 2.5 hours per week experience a slowed decline in quality of life compared to those who start later.
Establishing early exercise habits is vital to managing your PD symptoms. Exercise can help you maintain balance, mobility, and flexibility, as well as reduce the impact of non-motor PD symptoms like depression and constipation.
By educating yourself about PD, building health habits that include taking care of your mental health, and working with your care team to tailor treatment to your needs, you can lay the foundation to live well with PD.
“Continue to do the things you love and know that you have amazing resource available to help you on this new journey,” said Diana, spouse of person with Parkinson’s.
Explore all stages of the care partner journey and practical tips that can help along the way on our care partner resource pages.
In-person check-in and exhibitor tables open at 8 a.m. ET.; First speaker at 9 a.m.
Join in-person or online via Zoom for a FREE educational day open to the public. It is a great way to update your knowledge of the specifics of Parkinson's Disease and meet people who are fighting for a cure. Lunch is included for those that RSVP.
Robert Stocksdale Lecture Fund Guest Speaker: Dave Iverson
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 Florida Chapter is pleased to be working with Norman Fixel Institute for Neurological Diseases for the April 6 program in Gainesville, Florida.
COVID SAFETY: The health and safety of our participants, sponsors, volunteers and staff are our top priority. We continue to monitor CDC recommendations and will adhere to state and local COVID guidelines in place on the event day. Adjustments will be made if necessary.
Get out and move with your community! Every dollar raised supports the Parkinson’s Foundation mission to make life better for people affected by Parkinson’s disease (PD). At Moving Day Community Walks across the country, we’re fighting Parkinson’s and celebrating movement — proven to help manage Parkinson’s symptoms — and we’re doing it together. The Moving Day Community Walk Program is a complement to the Parkinson’s Foundation Moving Day, A Walk for Parkinson’s. These walks are family-friendly and help the Foundation make life better for people with PD.
The Community Walk program offers volunteers an opportunity to organize a walk in their own community that does not have a Moving Day event. The program leverages the personal experiences and community leadership of passionate volunteers to promote Parkinson’s awareness and raise funds for the Parkinson’s Foundation.
Get out and move with your community! Every dollar raised supports the Parkinson’s Foundation mission to make life better for people affected by Parkinson’s disease (PD). At Moving Day Community Walks across the country, we’re fighting Parkinson’s and celebrating movement — proven to help manage Parkinson’s symptoms — and we’re doing it together. The Moving Day Community Walk Program is a complement to the Parkinson’s Foundation Moving Day, A Walk for Parkinson’s. These walks are family-friendly and help the Foundation make life better for people with PD.
The Community Walk program offers volunteers an opportunity to organize a walk in their own community that does not have a Moving Day event. The program leverages the personal experiences and community leadership of passionate volunteers to promote Parkinson’s awareness and raise funds for the Parkinson’s Foundation.
Robin Williams: Demencia con cuerpos de Lewy, suicidio y Parkinson
A lo largo de su carrera, el genio de la comedia Robin Williams nos hizo reír y nos emocionó con sus actuaciones. Pero su historia también aumentó la conciencia acerca de la demencia con cuerpos de Lewy, una prevalente enfermedad que altera la vida. Volcó la tan necesaria atención sobre la importancia de la salud mental y los síntomas no motores de depresión y ansiedad que pueden acompañar a una enfermedad neurodegenerativa.
Casi 10 años después de su fallecimiento, ¿qué sabemos acerca de la demencia con cuerpos de Lewy? ¿Cómo podemos ayudar a la gente que tiene una enfermedad neurológica cuando experimentan pensamientos suicidas?
¿Qué es la demencia con cuerpos de Lewy?
La demencia con cuerpos de Lewy (DCL) es un trastorno cerebral progresivo que se diagnostica cuando el deterioro cognitivo es uno de los primeros síntomas. También puede diagnosticarse cuando el deterioro cognitivo y los síntomas motores comienzan y se desarrollan conjuntamente.
"La demencia con cuerpos de Lewy es un tipo común de demencia —es la segunda demencia neurodegenerativa más común después del Alzheimer," dijo Jennifer G. Goldman, neuróloga especializada en trastornos del movimiento jefa de sección de enfermedad de Parkinson y trastornos del movimiento en el Shirley Ryan AbilityLab y profesora de medicina física y rehabilitación y neurología en la Feinberg School of Medicine de la Northwestern University, un centro de excelencia de la Parkinson’s Foundation.
"Se cree que afecta a 1.4 millones de individuos en los EE.UU., pero no está ampliamente reconocida. Con una mayor educación y concientización, donde la demencia con cuerpos de Lewy incluya tanto la demencia con cuerpos de Lewy como la demencia de la enfermedad de Parkinson (EP), podemos empezar a cambiar ese panorama."
¿Cuál es la diferencia entre la demencia con cuerpos de Lewy y la demencia de la enfermedad de Parkinson?
La demencia con cuerpos de Lewy es un término utilizado tanto para la demencia de la enfermedad de Parkinson como para la demencia con cuerpos de Lewy. Tienen algunas cosas en común, pero su progresión y tratamiento son diferentes.
Aunque muchas personas con Parkinson pueden experimentar cambios cognitivos, es importante saber que no todas las personas con Parkinson desarrollarán demencia. "Cuando observamos cambios cognitivos más graves, sobre todo cuando afectan la función o la capacidad de alguien para actuar de forma independiente en las actividades de la vida diaria, su trabajo o sus aficiones, lo consideramos como una forma de demencia", afirma la dra. Goldman.
"Con la demencia de Parkinson, los síntomas motores preceden a la demencia. En la demencia con cuerpos de Lewy, el síntoma principal inicial es la demencia; los cambios cognitivos son tempranos y los rasgos motores, si están presentes, aparecen tras el inicio de la demencia o de forma concurrente", dijo la dra. Goldman.
Luchar por un diagnóstico
Antes de que a Robin Williams le diagnosticaran demencia con cuerpos de Lewy, se informó que experimentaba de paranoia, confusión, insomnio, estreñimiento y falta de olfato. Para muchos, la amplia gama de síntomas iniciales —no todos relacionados con la función cerebral—, dificulta el diagnóstico de la demencia con cuerpos de Lewy.
La Dra. Goldman exhorta a los pacientes a luchar por encontrar su diagnóstico. "Continúe buscando las respuestas y busque a un especialista que le ayude a identificar la causa de los problemas cognitivos o el tipo de demencia", dijo la dra. Goldman. "El médico adecuado puede cambiar el tratamiento, el pronóstico y la posibilidad de participar en estudios de investigación. Es importante tener el mejor entendimiento de la enfermedad para tener la oportunidad de obtener los mejores resultados."
Las personas que viven con Parkinson se benefician más de un enfoque de cuidado integral y basado en el trabajo en equipo que incluya un profesional de la salud mental. Con un equipo establecido, si surgen la depresión o pensamientos suicidas, tendrá una relación establecida con un profesional en quien confía. Sin embargo, nunca es demasiado tarde para añadir un profesional de la salud mental a su equipo de atención.
Si usted o un ser querido tiene pensamientos suicidas:
Encuentre el recurso que le funcione: las líneas directas de prevención del suicidio disponibles las 24 horas pueden ayudar, como la National Suicide Prevention Lifeline (Línea Nacional de Prevención del Suicidio) llamando al 1-800-273-8255.
Busque ayuda profesional: Busque un psicólogo, terapeuta, consejero o trabajador social en quien pueda confiar y apoyarse.
Manténgase activo: Para las personas con Parkinson, puede ser fácil distanciarse. Intente ponerse en contacto con familiares y amigos, programe llamadas telefónicas periódicas, busque un grupo de apoyo o una clase de bienestar.
Construya su equipo de apoyo: llame a la Línea de Ayuda de la Parkinson's Foundation al 1-800-4PD-INFO (473-4636), opción 3 para español, para encontrar un grupo de apoyo local o en línea.
Existen opciones de tratamiento para la demencia con cuerpos de Lewy y la demencia de la enfermedad de Parkinson. Los equipos de atención médica están descubriendo que el enfoque más eficaz es una combinación de medicación, ejercicios físicos y mentales y la incorporación de un profesional de la salud mental como parte de dicho equipo.
"Se está investigando bastante acerca de la demencia con cuerpos de Lewy", dijo la dra. Goldman. "Los investigadores intentan comprender por qué ocurre y si existen diferencias entre la demencia de la enfermedad de Parkinson y la de cuerpos de Lewy, a pesar de que comparten muchos síntomas clínicos y patología. La investigación en curso abarca desde el intento de predecir o detectar cambios tempranos en individuos que podrían desarrollar demencia con cuerpos de Lewy hasta el estudio de distintos tratamientos: desde medicamentos hasta ensayos más recientes que empiezan a estudiar el papel de los ejercicios mentales y físicos.”
Más recursos
La Parkinson’s Foundation cree en empoderar a la comunidad de Parkinson a través de la educación. Aprenda más:
Contacte a la Línea de Ayuda de la Parkinson’s Foundation llamando al 1-800-4PD-INFO (1-800-473-4636), opción 3 para español, para obtener más información acerca de cualquiera de estos temas y el Parkinson.
Videos & Webinars
¿Cuáles son las causas de la enfermedad de Parkinson?
