Let's Talk About It: Medications, Research, Memory & Anxiety
Hosted by the Parkinson’s Foundation Mid-Atlantic Chapter & Acts Country House
There are many non-motor challenges associated with Parkinson’s disease that may not always be easy to discuss. With a focus on Medications, Research, Memory & Anxiety, this program will provide strategies for coping and talking about it with healthcare providers or loved ones. Learn comprehensive insights with a focused discussion, presentations, and Q&A panel with our speakers.
Speakers: Whitley Aamodt, MD, MPH, MSCE
Assistant Professor of Neurology
Parkinson’s Disease and Movement Disorders Center
University of Pennsylvania
Muhaimin Id'Deen, PharmD
Jesus Arriaga, OHI
Clinical Pharmacists, Neurology Specialty Pharmacy - Christiana Care Health System
Roseanne D. Dobkin, PhD
Associate Professor of Psychiatry
Rutgers
Lanny Edelsohn, MD
Retired Neurologist - Christiana Care Health System
Deborah Heald
ACTS Country House Rock Steady Boxing Trainer
Check-in and resource fair starts at 10 a.m.; Program starts 11:00 a.m.
Attendance is free. Parking is available onsite
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.
A Collaboration with Acts Country House in Wilmington, DE
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.
Expert Briefing: Addressing the Challenge of Apathy in Parkinson's
September 11, 2024
Apathy can significantly impact the quality of life for people with Parkinson’s disease (PD). This invisible symptom can make it difficult to maintain interest in daily activities and to effectively manage PD symptoms. Apathy can be frustrating for people with Parkinson’s, care partners and loved ones, but understanding it as a symptom and finding ways to cope with it are key to ensuring a good quality of life.
Aaron C. Malina, PhD, ABPP
Clinical Neuropsychology
Northwestern Medicine-Lake Forest Hospital
A Parkinson's Foundation Center of Excellence
Raise Awareness
How To Start A Support Group
It is vital for people living with Parkinson's disease (PD) and care partners to make social connections and find support. Whether you have been newly diagnosed with PD, have been living with PD for a while, or are caring for someone with PD, connecting with others can help.
Challenges associated with PD, including movement symptoms, cognitive changes and emotional fluctuations, can lead to social withdrawal and isolation. Engaging in social activities can provide a valuable support network, combat feelings of depression and loneliness, maintain cognitive function and emotional well-being.
Why are support groups important?
Finding the right support group can help you build your PD community. In these groups, people share their experiences, learn from each other, and get access to resources that suit their needs.
Through these connections, individuals affected by PD not only find companionship and empathy but also gain a sense of belonging and resilience that can improve their PD journey. With the support provided by groups, people affected by PD can navigate the condition with greater confidence, hope and well-being.
Types of Support Groups
There are many kinds of PD support groups available. They include:
People with PD: These groups focus on people living with PD, allowing them to share their experiences, learn from each other and offer support.
Care partners: Care partners know Parkinson’s and its ups and downs. These groups provide a space for care partners to share their challenges, receive support and learn coping strategies.
Combined Groups: Many support groups welcome people with PD and care partners, fostering a supportive environment where both groups can share experiences, offer mutual support and learn from each other's perspectives.
Young-Onset PD (YOPD): These groups cater to those diagnosed with PD at a younger age, addressing unique challenges and concerns relevant to them.
Virtual: Online communities that allow members to share experiences from the comfort of their own home.
In-person: Face-to-face gatherings where people can meet to discuss their experiences.
Tips for Starting A Support Group
If you have not found a support group that is the right fit for you, consider starting your own. Explore our Support Group Guide for a step-by-step planning process. The most important part of any support group is to ensure members feel accepted, respected and comfortable when attending the group.
Building and launching a support group requires planning, organization and attention to detail. The “let’s get started” phase can be overwhelming, but breaking down a big task into smaller tasks can make planning more manageable. Consider these key aspects before launching a support group:
Who will attend this group?
This step is crucial for building the foundation of your support group. Make sure you know your audience before you figure out any specific details about the group. You can choose from the types of support groups above to get started.
Where will the group take place?
If you decide to start an in-person support group, start looking for a potential meeting space. The location can make or break your group. Rule out locations that are not easily accessible.
These locations are generally open to hosting support groups:
Public libraries
Hospitals
Community living centers
Places of worship (remember accessibility requirements for older buildings)
Town halls
Senior centers
Senior living facilities or nursing homes
Each community is unique, so consider what other possibilities could exist in yours. Talk to people and let them know what you are looking for. Let others spread the word to help you secure a solid, consistent location.
How often will your group meet?
Many PD support groups meet monthly. Find the frequency that works for your group. Consider that the more often you meet, the faster members can become fatigued, and more planning will be required. Meeting less than once a month can limit the group’s ability to build relationships.
Having a consistent day of the month (for instance, the second Tuesday of each month) helps people to remember when the group meets.
An even bigger consideration is time of day — will you meet in the morning, afternoon, or evening? Make the decision that works best for you as a leader and ask potential participants for feedback. Establishing a regular time and place will help your group expand as more people become aware of its existence.
What is the support group’s format?
There are many formats you may choose to use for your group. The best advice is to stay flexible. You may start out with a formal meeting agenda and decide that you want to change things up and go less formal. Listen to what your group members tell you!
To help “break the ice” at the start of each meeting, particularly for new members in attendance, introductions are a great technique. Not only does everyone get a chance to say something, but it also helps members remember names and relationships.
How long are meetings?
Support groups usually meet for no more than 90 minutes. It also may be helpful to design a break halfway through for refreshments and a rest room break. Find what works best for the group.
Parkinson’s Education and Finding Guest Speakers
Besides planning the basics, it is also important to consider things like topics for each meeting and if you plan to have a guest speaker. One common need for the Parkinson’s community is disease education.
Parkinson’s Foundation volunteer. Email us at Volunteer@Parkinson.org and we can help connect you to someone in your area.
If you are not sure where to start, ask your group members for suggestions and topic recommendations.
Promoting Your Group
Promotion is essential for a successful support group. Word of mouth can help but it is typically not enough. Consider creating a flyer or letter announcing the group, starting date, location and contact person. If you have a speaker scheduled, be sure to include that information and the topic they will be discussing.
Social media can also be helpful in raising awareness of your new group. It can be especially helpful for reaching younger people with PD and their care partners. Managing a social media page could be a great volunteer role for a group member to take on.
How To Find A Support Group
Here are two ways to find a local PD support group:
This webinar highlights the importance of planning for long-term care and the role of elder law in protecting your assets and securing quality care. Participants will learn about different care options, their costs, and payment sources like Medicare and Medicaid. The session will also cover eligibility for these programs, helping attendees make informed decisions about their long-term care and financial security.
Speaker
Lauren L. Fink
Shareholder and Attorney at Law
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.
Join us for an in-depth look at the latest advancements in Parkinson’s disease research and the emerging treatments. This webinar will cover the current medication pipeline, highlighting new therapies and their potential impact on symptom management. Participants will also learn how to identify and participate in relevant clinical studies, staying informed on the cutting-edge research that is shaping the future of Parkinson’s care.
Speaker
Kevin McFarthing, PhD
Parkinson's Research Advocate, Oxford, UK
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.
Food is more than just fuel—it plays a powerful role in how we think, feel, and move. This session explores the connection between nutrition and Parkinson’s, covering how diet influences brain health, gut function, and overall well-being. We’ll discuss the impact of food on the body’s systems, the role of protein in medication effectiveness, and how to use nutrition as a tool to enhance quality of life.
Speaker
Carolee Horner, MS, NBC-HWC
Functional Nutritionist
Health Coach
There is no charge to attend, but registration is required.
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.
Check-in and lunch begins at noon. The program begins at 1:00 p.m.
After many years of good symptom management, Parkinson’s disease may become more challenging. Learn how Parkinson’s symptoms may change over time and new strategies available for managing them.
Speakers:
Joan Hlas
Manager of Struthers Parkinson's Center, a Parkinson's Foundation Center of Excellence
Deb Mattson, MPT CCCE/CI
River's Edge Hospital
Jen Wunderlich, MS, ACSM-EP
VINE Faith in Action
This program is open to people with Parkinson's, their family, friends and the community. There is no charge to attend, but registration is required as in-person seating is limited.
12:00 p.m. In-person check-in, Vendor Visits and Lunch
1:00 p.m. Welcome from Parkinson's Foundation
1:15 p.m. Motor Symptoms with Deb Mattson, MPT, CCCE/CI
1:45 p.m. Break
2:00 p.m. Importance of Care Team and Support Systems with Joan Hlas
2:45 p.m. Movement with Jen Wunderlick, MS, ACSM-EP
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.
La caja de herramientas para aliados en el cuidado incluirá estrategias prácticas, recursos y mecanismos de apoyo. Nuestros panelistas profundizarán en consejos y herramientas eficaces diseñados para simplificar los desafíos cotidianos. Los temas pueden incluir el autocuidado, la creación de redes de apoyo, mejorar las habilidades de comunicación, brindar asistencia práctica y estrategias para la planificación anticipada.
Ya sea que esté recién diagnosticado, sea aliado en el cuidado o simplemente busque aprender más, este webinar ofrece valiosos conocimientos y consejos prácticos de expertos y personas diagnosticadas con la EPIT.
Panelistas
Oda Garcia, embajadora de la Parkinson’s Foundation, hija adulta cuidadora
Carla Velastegui, miembro del People with Parkinson’s Advisory Council, hija adulta cuidadora
Moderadora
Josephine De Lira, trabajadora social clínica certificada
Northwestern Medicine (Centros 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. 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.
Living with Parkinson’s can be challenging, but there are many things you can do to maintain and improve your quality of life. This program will provide you with information to help you find the balance between a proactive approach and wondering what lies ahead.
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. Lunch will be served to those joining us in person.
Featured Speakers:
Amy E. Brown, MD, MS
Vanderbilt University Medical Center
Lisa Cate
PD Wellness Club / Community Taekwondo
Thomas L. Davis, MD
Vanderbilt University Medical Center
George Quintero, PhD
University of Kentucky Neurorestoration Center
Lauren Scanlon, PT, DPT, GCS, MSCS
Vanderbilt University Medical Center
Jessica Stroh, RN
Vanderbilt Neurosciences
Movement Break Provided by:
Beverly Bell, PTA
Optimum Hope! Parkinson’s Wellness Program
Music Break Provided by:
Colleen Bridges, M.Ed, NSCA-CPT
Bridges for Parkinson’s - Rock Steady Music City/Franklin
For in-person attendees: In-person check-in and vendor visits start at 9:00 a.m. CT.
For virtual attendees, via Zoom:For virtual attendees: Can't make it in person? Click on "register for virtual" above to receive the program recording.
Agenda
9:00 a.m.
Check-in, Breakfast & Resource Fair
10:00 a.m.
Welcome (Livestream Begins in Zoom) Evan Christian, Parkinson’s Foundation
10:10 a.m.
Expert Panel: Latest Research on Lifestyle Factors and Parkinson’s Outcomes Moderator: Jessica Stroh, RN, Vanderbilt Neurosciences Amy E. Brown, MD, MS, Vanderbilt University Medical Center Thomas L. Davis, MD, Vanderbilt University Medical Center Lauren Scanlon, PT, DPT, GCS, MSCS, Vanderbilt University Medical Center
11:00 a.m.
Question & Answer Session
11:20 a.m.
Movement Break Beverly Bell, PTA, Optimum Hope! Parkinson’s Wellness Program
11:35 a.m.
Lunch Break & Resource Fair
12:00 p.m.
Research Spotlight: DBS-Plus George Quintero, PhD, University of Kentucky Neurorestoration Center
12:30 p.m.
Question & Answer Session
1:00 p.m.
Living Well with Parkinson’s: Person with Parkinson’s and Care Partner Panel Moderator: Lisa Cate, PD Wellness Club Dean and Kathy Gregory Fatima Karwandyar Ginger Ash Lucas Chang, Vanderbilt Partners for Parkinson’s Program
1:55 p.m.
“I Need A Love” Musical Performance Colleen Bridges, M.Ed, NSCA-CPT, Bridges for Parkinson’s - Rock Steady Music City/Franklin
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.
Check-in & Resource Fair start at 9:00 a.m. EST (for in-person attendees)
Living with Parkinson’s can be challenging, but there are many things you can do to maintain and improve your quality of life. This program will provide you with information to help you find the balance between a proactive approach and wondering what lies ahead.
There is no charge to attend, but registration is required. This program is open to people with Parkinson's, their family members, friends and the community. Lunch will be served to those joining us in person.
Speakers: TBA
For in-person attendees: In-person check-in and vendor visits start at 9:00 a.m. EST.
For virtual attendees (via Zoom): The livestream starts at 9:30 a.m. EST.
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.
