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)
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
We are currently at capacity for in-person attendance. Please register to join us at-home via Zoom.
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.
Speakers:
Michelle Hill, M.S. CCC-SLP, CDP Resurgence Neuro Rehab
Myriam Sollman, PhD, Prisma Health
Marlena Matusewicz, Psy.D., ABPP, Atrium Health
Matthew Gallegos, PT, DPT, JP2 Physical Therapy
Sidharth Madhavan, Ph.D., Duke School of Medicine
Matthew Gallegos, PT, DPT, JP2 Physical Therapy
For in-person attendees: In-person check-in and vendor visits start at 9:00 a.m. EST. Lunch will be served.
For virtual attendees (via Zoom): The livestream starts at 10:00 a.m. EST.
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.
9:00 a.m. Check-in & Resource Fair
Livestream Begins
10:00 a.m. Welcome
Diana Parrish, Parkinson’s Foundation
10:10 a.m. Expert Panel: The Gut-Brain Connection: Nutrition, Digestion, and Swallowing in Parkinson’s
Moderator: Kim Gamble, Memory & Movement Charlotte
Michelle Hill, M.S. CCC-SLP, CDP Resurgence Neuro Rehab
10:40 a.m. Question & Answer Session
11:00 a.m. Movement & Stretch Break
Bhibha M. Das PhD, MPH, FACSM, My Care to Take Care
11:15 a.m. Expert Panel: Let’s Get Uncomfortable- The Parkinson’s Topics We Need to Talk About
Moderator: Diana Parrish, Parkinson’s Foundation
Myriam Sollman, PhD, Prisma Health
Marlena Matusewicz, Psy.D., ABPP, Atrium Health
Matthew Gallegos, PT, DPT, JP2 Physical Therapy
Lou Morris, person with PD
11:45 a.m. Question & Answer Session
12:20 p.m. Lunch Break and Resource Fair
12:05 p.m. Movement & Stretch Break
Matthew Gallegos, PT, DPT, JP2 Physical Therapy
Kelly Evans, RSB Coach, Personal Trainer JustWorkout
12:50 p.m. Holding on to Hope: Building Resilience While Living with Parkinson’s
Myriam Sollman, PhD, Prisma Health
1:15 p.m. People with Parkinson’s & Care Partner Panel
¿Cuáles son las etapas de la enfermedad de Parkinson?
La enfermedad de Parkinson (EP) afecta a las personas de diferentes maneras. No todos experimentarán todos los síntomas de la EP y, si lo hacen, no necesariamente experimentarán esos síntomas en el mismo orden o con la misma intensidad.
Aunque los síntomas y la progresión de la enfermedad son únicos para cada persona, conocer las etapas que clásicamente se describen en el Parkinson puede ayudarle a lidiar con los cambios a medida que ocurren.
The holiday season can be an exciting and joyful time for many. However, for some it can be filled with unforeseeable challenges and fears. Maintaining mindful awareness is a key part of getting through challenging conversations or the stress associated meal preparation, hosting a gathering, and seeing friends and family for the first time in a while. Today’s mindfulness practice will focus on gratitude and self-compassion.
Speaker
Danielle R. Carns, PsyD
Director, Functional Neurological Symptom Disorder Program
Clinical Neuropsychologist, Assistant Professor
University of Pittsburgh School of Medicine
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.
In sessions with Dr. Rush, we explore different dimensions of a mindfulness practice. She will share ways to ground and settle the mind and body. These mindfulness techniques can offer moments of respite and clarity that can be useful throughout your week. Find a comfortable seat and join your mindful Parkinson's community for a special session.
Whether this is your first mindfulness Monday, or you are a returning participant, these sessions are created with the intention of including everyone. There will be time for questions following the practice.
Speaker
Taylor Rush, Ph.D. - Health Psychologist, Director of Behavioral Services and Interdisciplinary Programs, Center for Neurological Restoration, Cleveland Clinic
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.
Managing a chronic condition can bring up feelings of overwhelm and anxiety. In this session we will think together about the cultivation of equanimity through mindfulness practice and offer a meditation specifically designed to build equanimity in the face of life’s most pressing challenges.
Speaker
Nico Hase, PhD, Author, Meditation Teacher
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.
Parenting with Parkinson’s: 7 Tips to Help Kids Flourish
Parenting is one of the most important jobs people with children will ever have. It is also one of the hardest. Raising a family while living with Parkinson’s disease (PD) or supporting a spouse who does, creates unique challenges. Building a stable, emotionally supportive environment can help you focus on the joys of parenthood while ensuring your children thrive. The tips that follow can help.
1. Build Trust
A child can detect when something has changed within the family. If they aren’t told what it is, they can suspect the worst. Parents tend to want to protect children from difficult conversations. However, Parkinson’s affects the whole family. Ongoing, honest communication builds trust.
When you’re ready, talking openly about your diagnosis, while using clear, simple, age-appropriate language, can minimize fears of the unknown and help everyone adjust. Choose a time when you won’t be interrupted, are able to speak calmly and can fully answer any questions. Talking sooner, rather than later, eases worry and helps the whole family begin to navigate the future — together.
Children are aware of the impact Parkinson’s is having on the parent living with the disease and the rest of the family. Discuss how Parkinson’s might change day-to-day living. Look inward to find hope and channel positivity. Navigating Parkinson’s together can bring a family closer while teaching self-sufficiency and empathy. It can also help children learn healthy ways to cope with life’s unpredictability.
Talk about how you are taking charge where you can — through creating healthy habits, staying active or finding support — and suggest small ways your children can help at home. Daily responsibilities can empower children with a way to contribute, giving them some control.
Taking action in bigger ways, such as volunteering together as a family, can give them a sense of pride. Find events you can attend as a family, such as your local Moving Day, A Walk for Parkinson’s.
3. Create Stability
A sense of stability is an essential part of a healthy childhood. It creates a foundation for future emotional, social and physical well-being. When parenting with Parkinson’s, it’s important to maintain the style of parenting you practiced before diagnosis and to stay actively involved in your child’s life. Continuing the same values, rules, expectations and boundaries creates consistency, which helps children succeed.
Continue to provide direction and structure. A daily, but flexible, routine benefits the whole family. Some days, symptoms, appointments or activities may interfere with what you have planned. However, overall predictability helps children feel secure.
4. Maintain the Magic
Childhood is a time of wonder. Children are learning about the world for the first time. The enchantment of seeing the world through their eyes offers a rare kind of happiness.
While Parkinson’s may change daily life, encourage your child to pursue new experiences, interests and hobbies. Continue to provide everyday family life while involving your child in what interests them. Make time to support their efforts.
5. Enlist Emotional Support
Navigating the obstacles of growing up, whether it be finding one’s identity, a friendship feud or a difficult teacher or class, can be hard. Occasional feelings of sadness, anger or worry are not uncommon.
Processing the changes and emotions that come with a parent’s PD diagnosis can be more challenging. Children can experience a range of tough feelings, including social isolation, anger, depression and anxiety, grief and a heavy sense of duty.
As a parent, you know your child best. If you notice emotional changes that last more than a few weeks, connect your child with someone they can talk to about their feelings. Your family doctor can offer a referral to a counselor. Sharing your diagnosis with educational staff can offer your child support during the school day. A trusted teacher or coach can help you keep an eye on your child’s emotional well-being outside of the home.
6. Practice Self-Care
Everyone wants the best for their children. To meet their needs, make time to care for your own physical and emotional health. Stay on top of your neurologist appointments, build your care team to help manage progressing symptoms, work on getting enough sleep, eating healthy and pursuing your interests.
Children learn a lot about coping from their parents. Model healthy coping by sharing your honest feelings appropriately as well as using strategies to cope like exercise and connecting with friends.
Leaning on family, friends and neighbors for help and support can help you create space for your needs. Finding a support group can help you connect with others, many of whom may also be parents, and find shared understanding. Practicing patience with yourself, your partner and your children, can help you manage stress.
Parkinson’s is progressive. Future concerns may look different from today’s challenges — and that’s okay. Consider bringing children to a neurology appointment so they can meet your PD doctor and ask questions.
Keeping the Parkinson’s conversation going will help you learn and grow as a family. While checking in regularly about how to best meet hurdles together and be sure to celebrate the wins, both small and large.
In sessions with Dr. Rush, we explore different dimensions of a mindfulness practice. She will share ways to ground and settle the mind and body. These mindfulness techniques can offer moments of respite and clarity that can be useful throughout your week. Find a comfortable seat and join your mindful Parkinson's community for a special session.
Whether this is your first mindfulness Monday, or you are a returning participant, these sessions are created with the intention of including everyone. There will be time for questions following the practice.
Speaker
Taylor Rush, Ph.D. - Health Psychologist, Director of Behavioral Services and Interdisciplinary Programs, Center for Neurological Restoration, Cleveland Clinic
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.
