Expert Briefing: What's on Your Mind? Thinking & Memory Changes
November 13, 2024
Cognitive changes, including slowness in thinking, decreased attention span and difficulty finding words, can often occur in Parkinson’s disease. These changes, along with memory loss, can be frustrating and challenging for the person with Parkinson’s and those close to them. This webinar will review the cognitive and memory changes in Parkinson’s as well as practical strategies to help with daily activities.
Greg Pontone, MD, MHS
The Louis and Roberta Fixel Chair
Division Chief, Aging, Behavioral, and Cognitive Neurology
Co-Director of the Fixel Neuropsychiatry Program
University of Florida College of Medicine
Professor, Department of Neurology
Fundraising Events
Moving Day Huntsville
9:00 am to 12:00 pm CDT
FREE
Moving Day is an inspiring and empowering annual fundraising walk event that unites people around the country living with Parkinson’s disease (PD), their care partners and loved ones to help beat PD. Moving Day is more than just a walk. It’s a celebration of movement – proven to help manage Parkinson’s symptoms.
Leading up to the event, participants and teams fundraise to help the Parkinson’s Foundation provide vital resources and deliver quality care to more than 364,000 people living with Parkinson’s and other movement disorders, while improving Parkinson’s treatments through research.
Moving Day proceeds help bring quality care to more people with Parkinson’s, further Parkinson’s research, education and outreach initiatives. Moving Day raises awareness of Parkinson’s both nationally and in the local community.
APDA Minnesota Chapter, Parkinson's Foundation, and the Udall Center at the University of Minnesota are the three leading organizations for Parkinson's disease advocacy in Minnesota.
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 information on relevant Parkinson’s topics and empowering knowledge focusing on actively pursuing well-being with PD.
Lunch will be served to those joining us in person.
Expert Speakers:
Anjali Varghese, DO
Assistant Professor
Neurologist, Movement Disorder Specialist
UT Southwestern Medical Center
Bradley McDaniels, PhD, CRC
Assistant Professor
University of North Texas
Julie Hebert, OTD, OTR
Associate Professor
Master of Physician Assistant
West Coast University
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
9:00 a.m.
Check-in & Resource Fair
Speakers Begin:
9:45 a.m.
Welcome
Elizabeth Guerrero – Parkinson’s Foundation
10:00 a.m.
What’s in the Parkinson’s Treatment Pipeline
Anjali Varghese, DO
10:45 a.m.
Question & Answer Session
11:00 a.m.
LSVT BIG & LOUD Movement Break
TBD
11:15 a.m.
Lunch Break & Resource Fair
11:45 a.m.
Actively Pursuing Well-being with PD
Bradley McDaniels, PhD, CRC
12:30 p.m.
Question & Answer Session
12:45 p.m.
Movement Break - Mindfulness Break
12:55 p.m.
Finding the “Sweet Spot” with Occupational Therapy
Where your strengths, the activities you enjoy, and environment work together.
APDA Minnesota Chapter, Parkinson's Foundation, and the Udall Center at the University of Minnesota are the three leading organizations for Parkinson's disease advocacy in Minnesota.
Join us for a day dedicated to groundbreaking insights and community connections, where you’ll learn about the latest treatments, ongoing research, and resources available locally and beyond. Engage with expert-led sessions and interactive demonstrations to empower yourself to live your best life with Parkinson's. This symposium is for patients and caregivers looking to deepen their understanding and enhance the well-being of those with Parkinson's. Secure your spot today.
Keynote Address:
Dr. Ray Dorsey
Featured Speakers:
Ochsner Movement Disorders Providers & Care Team
Movement Disorder Specialists from Across the State of Louisiana
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.
This program is hosted by Ochsner Health in partnership with the Parkinson's Foundation Gulf Coast Chapter.
APDA Minnesota Chapter, Parkinson's Foundation, and the Udall Center at the University of Minnesota are the three leading organizations for Parkinson's disease advocacy in Minnesota.
Join the Parkinson’s Foundation for the Georgia Parkinson’s Symposium. Attendees will learn about symptoms, treatment options and strategies to help navigate the challenges of living with PD. While each person’s experience is unique, the more you know, the more empowered you will be to play an active role in your care and manage your life with Parkinson’s.
Expert Speakers:
TBA
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.
APDA Minnesota Chapter, Parkinson's Foundation, and the Udall Center at the University of Minnesota are the three leading organizations for Parkinson's disease advocacy in Minnesota.
Join the Parkinson’s Foundation for the Learn More, Live Better Symposium in Chattanooga. Attendees will learn about symptoms, treatment options and strategies to help navigate the challenges of living with PD. While each person’s experience is unique, the more you know, the more empowered you will be to play an active role in your care and manage your life with Parkinson’s.
Speakers - TBA
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.
This program is hosted by the Parkinson's Foundation Tennessee-Kentucky Chapter in partnership with Erlanger.
APDA Minnesota Chapter, Parkinson's Foundation, and the Udall Center at the University of Minnesota are the three leading organizations for Parkinson's disease advocacy in Minnesota.
En este webinar contaremos con una musicoterapeuta certificada, quien hablará acerca de la musicoterapia y sus beneficios, explorando sus efectos físicos, mentales, emocionales y sociales en la enfermedad de Parkinson.
La sesión será interactiva, invitándolo a cantar, moverse y tocar instrumentos, todo para calentar un día de invierno.
APDA Minnesota Chapter, Parkinson's Foundation, and the Udall Center at the University of Minnesota are the three leading organizations for Parkinson's disease advocacy in Minnesota.
Episode 173: Listening to the Voices of Our Parkinson’s Caregivers
Each November, the Parkinson’s Foundation joins organizations across the country to honor care partners for National Family Caregivers Month. In this episode, we highlight the stories and experiences of two people who care for a person with Parkinson’s disease. Ripley Hensley is an emergency room nurse and a doctoral student at the University of Connecticut School of Nursing. Although she currently lives in Connecticut, she manages to find ways to help support both her mother, who is the primary caregiver, and her father who has Parkinson’s, back in Georgia. Meanwhile, Tom Graffeo lives with his partner, who has young-onset Parkinson’s. Although their caregiving roles differ, they share similar concerns and discuss how they provide care for their loved ones, while also prioritizing their own well-being.
Released: November 12, 2024
Ripley Fricano Hensley is an Emergency Department Registered Nurse, doctoral student at University of Connecticut, School of Nursing, and daughter to one really cool guy with Parkinson’s disease.
When her dad, Dave, was diagnosed in 2017, Ripley began looking for ways to improve care and quality of life for people with Parkinson’s both in and out of the hospital. She decided to pursue a PhD in Nursing. Ripley’s research at the University of Connecticut focuses on predictors of health behaviors and quality of life in people with PD. In addition to her academic research, her personal and professional experiences have made her especially passionate about hospital care standards, increased education for healthcare providers on PD management, family-centered care and caregiver support, expanded access to specialized care for individuals faced with geographic, financial, or functional barriers, and greater PD awareness and visibility.
In her free time, Ripley loves running, reading, planning trips (up next: Ecuador), and trying new ice cream flavors while she awaits the return of Dairy Queen’s s’mores blizzard. She and her husband, Ben, live in West Hartford, Connecticut with their dog and two cats. Ripley is so thankful for how the Parkinson’s Foundation continues to improve life for her dad, her family, and countless others globally. She is honored and humbled to serve on the People with Parkinson’s Advisory Council in such an incredible company and cannot wait to see what we can accomplish together.
Tom Graffeo has been involved in Hospitality for his entire career. Currently the Director of Sales and Marketing at the Sonesta Columbus Downtown hotel, living just a few miles outside of downtown with his partner and two dogs. He has 3 grown children who still reside in the state of Ohio. In 2006 his partner was diagnosed with early onset Parkinson's. Shortly thereafter Tom reached out to the only local place he could find, The Central Ohio Parkinson's Society (COPS). He started out volunteering at their Walk in the Park and education events. As the years passed and COPS became part of the Parkinson’s Foundation, Tom took on more volunteering responsibilities, eventually joining the Great Lakes Chapter board. Tom’s 10 years on the board concluded with 3 years as the President.
Past volunteer activities have included working the Suicide Prevention hotline, Franklin County Dog Shelter and Stonewall Columbus, supporting the LGBTQ community. In his free time, he enjoys running, traveling and spending quality time with his 3 grandsons. He is very excited to take on the next step in his Parkinson's Foundation journey.
Every year, Parkinson’s Foundation Helpline specialists receive calls from people with Parkinson’s disease (PD) and their loved ones looking for advice when it comes to navigating the holidays. So, we put our specialists’ top recommendations in this article.
From not knowing how to explain PD to grandchildren, to feeling insecure that family will notice worsening symptoms and the exhaustion that can accompany travel, the holidays can be overwhelming. By thinking ahead about possible stressors, this article is designed to help you plan and prepare to enjoy your holiday season while best managing PD symptoms.
1. Preparing to see family you haven’t seen in a while.
The holidays can be a time when extended family gets together. What if your symptoms have changed since the last time you saw these family members?
Before you see family consider providing them a primer to Parkinson’s — sending them a link in the family chat or email to our What is Parkinson’s page. Early on in your holiday get-together, consider speaking about Parkinson’s for a few minutes to help them understand how you are doing, establishing expectations and setting limits on what works for you.
It can be helpful to come up with a few short sentence scripts prior to these meetings. That way you can practice what you want to say and get the most important information across. An example could be, “Since last seeing you my Parkinson’s symptoms have picked up. My hand shakes more and I walk a little slower. Taking my medicine on time helps me feel my best. Unless I ask for extra help, please treat me as you would anyone else.”
2. Managing Parkinson’s medications when traveling.
What should you know about traveling with Parkinson’s medications?
Carry all medications in their original bottles, with the name of the drug and your doctor’s name on the label.
Continue to take medications on time, every time, even if changing time zones
Bring a copy of your prescriptions (generic and non-generic names) and medication regimen, including your physician’s name and contact information. This printable medication schedule can help.
Keep all your medications, for your entire trip, with you in your carry-on bag; include snacks, water or juice to take with medications.
If possible, pack extra medication in case you are delayed.
Set timers to help you remember to take your medication.
Consider bringing or printing a Hospital Safety Guide with you when traveling. If you do not have one, order or download the guide and its printable components online in the planning stage of your trip.
How can you make traveling with Parkinson’s easier? Whether you’re driving, flying or taking that dream cruise this holiday season, we’ve gathered helpful tips in our Traveling with Parkinson’s below. Read this refresher to help you prepare for all aspects of your upcoming trip.
General travel tips:
Plan to rest the day before your trip and the day you arrive.
Add a name label to assistive equipment, such as a walker, cane or walking stick, before packing.
Give yourself extra time for everything.
Days before a flight, request wheelchair or electric cart service within terminals if necessary. Your bags will be handled too.
For cruises and theme parks, call ahead to rent assistive devices, such as a scooter.
For hotels, call ahead to request an accessible room, or a room near the elevator.
Don’t be afraid to ask for help.
Stick to your routine. It’s easy to get caught up in the excitement of the holidays but try to keep to your daily routine. Follow your usual medication times, mealtimes, exercise routine and sleep schedule.
4. Talking to children and grandchildren about Parkinson’s.
Drawing on the experiences of many PD families, children and grandchildren can have a wide-swinging variety of feelings about their parent or grandparent having Parkinson’s. The information you choose to share will likely change as they mature and are able to understand more aspects of Parkinson’s.
The good news is that children often adjust well to a loved one’s diagnosis of PD. Giving children a better understanding of Parkinson's can lessen their fear and anxiety about the disease. When you see children at a family gathering, consider:
Talking to them for a few minutes, providing them with general information about Parkinson’s. For instance, if they notice movement symptoms, you can share that Parkinson’s makes it harder for your body to move and share what you do to manage symptoms.
Using language that is understandable and concrete to your child.
Finding a way to allow the child to help and be involved. For instance, they can get you water, help you exercise your brain by playing a game or go on a walk with you.
5. Protect your mental health — and move your body.
Depression and anxiety can be symptoms of Parkinson’s. Prioritize and protect your mental health when traveling. That means taking time for yourself. Rest, read, take your grandchild to the movies, visit a local coffee shop — whatever helps you wind down.
It’s not easy to exercise when traveling but try to stick to your exercise routine as best as possible. Exercise is essential to managing Parkinson’s symptoms and mental health. Keep moving during the holidays. Whether it’s a short walk after a meal or asking your favorite family member to join you for a Fitness Friday on-demand virtual exercise class, staying active can help ease stiffness and improve your mood.
Exercise and movement can be great for the whole family especially during the holidays! Consider including your family in your exercise routine. Ask your grandkids to go on a walk with you, sign the family up for a boxing class or schedule a time for a virtual exercise class with all family members that are interested.
About 75% of people with Parkinson’s experience changes in speech and voice. People with Parkinson’s might struggle in a big group discussion, with following along, being heard or needing extra time to answer.
Tips to help you communicate with your family:
Drink plenty of water or other liquids each day (non-caffeine and non-alcoholic).
Do not strain your voice by shouting over loud noise when you talk.
Rest your voice when it is tired. Like other muscles in your body, the muscles controlling your speech need a break sometimes.
Reduce throat clearing or coughing.
Tips for family and friends:
Have important or more challenging conversations when the person with PD is well-rested and at their ‘best’ time of day.
Minimize talking ‘for’ the person with PD or filling in their responses unless they ask you to do so.
Reduce background noise when having a conversation. Turn off the radio and TV and shut doors to noisy areas.
Be aware that people with PD may not accurately express their emotions through facial expressions because of facial masking.
Be patient. Allow ample time for the person with PD to communicate.
Finally, don’t hesitate to ask for help. Whether it’s asking a family member to go on a pharmacy run for you, letting someone make your tea or calling a friend from your support group to simply confide in someone about how you’re feeling — your support system is there to help lighten the load.
Learn More: Call the Parkinson's Foundation Helpline 1-800-4PD-INFO (1-800-473-4636) and explore our Resources and Support page.
20 regalos adecuados para una persona con Parkinson
🧠 ¿Qué aprenderá en este artículo?
Este artículo ofrece ideas de regalo para algún conocido suyo que vive con la enfermedad de Parkinson. Incluye:
20 regalos adecuados para una persona con Parkinson.
Ideas de regalos pensados para hacer la vida un poco más fácil.
Regalos que una persona con Parkinson puede utilizar en distintos estadios de la enfermedad.
¿No sabe qué regalar a su ser querido con la enfermedad de Parkinson (EP) para las próximas fiestas o un cumpleaños? El Parkinson es una enfermedad que progresa con el tiempo y conlleva una infinidad de síntomas y, a veces, un pequeño regalo puede ayudar a facilitar un poco la vida.
Los siguientes productos no están respaldados por la Parkinson’s Foundation.
1. Para quien quiere moverse
Las investigaciones demuestran que el ejercicio habitual puede ayudar a aliviar los síntomas de la EP. Ayude a motivar a su ser querido a hacer ejercicio. Las pesas ligeras pueden llevar el gimnasio a su sala, mientras que un ejercitador de pedal de bicicleta portátil puede ayudar a activar la circulación, desde cualquier silla. Una nueva raqueta de pickleball puede inspirar el movimiento y generar comunidad. Para entrenamientos a la carta, explora nuestros videos de Viernes de Ejercicio.
2. Para quien necesita simplificar su cuidado personal
Mantener la salud dental es importante para las personas con Parkinson, ya que los síntomas pueden complicar el cuidado dental. Un cepillo eléctrico o un dispensador de pasta de dientes ayudan en estas tareas dentales diarias. Simplifique otras tareas de cuidado personal con una afeitadora eléctrica para hombres y mujeres.
3. Para quien ama ver a sus seres queridos
¡Ver a su ser querido en persona puede ser el mejor de todos los regalos! Entre visita y visita, ayúdele a tener las manos libres con un dispositivo inteligente para videollamadas, como el Amazon Echo Show. Estos dispositivos suelen tener la ventaja añadida de contar con un calendario y alertas activados por voz. Ayude a su ser querido a configurar otras funciones inteligentes, como conectarlo a lámparas y electrodomésticos mediante enchufes inteligentes.
4. Para quien necesita ayuda para probar cosas nuevas
Un 40% de las personas con la EP utiliza terapias complementarias para obtener alivio de los síntomas. Considere regalar una experiencia que su ser querido pueda probar cerca, como una clase de Tai Chi o yoga, una sesión de acupuntura o un masaje.
5. Para los amantes de la buena comida
Es habitual que las personas con la EP experimenten cambios de peso: algunas pierden peso, mientras que otras aumentan. Un regalo infalible para cualquier foodie puede ser programar una deliciosa entrega de comida de un restaurante local o comprarle sus comestibles para la semana utilizando un servicio de entrega como Instacart o AmazonFresh.
Haga que ver la televisión y comer bocadillos sea más cómodo con una bandeja de TV ajustable. Para el que lo ha visto todo, regale una suscripción mensual a un servicio de streaming que su ser querido aún no haya probado.
12. Para quien quiere mostrar su apoyo
Explore la tienda en línea de la Parkinson's Foundation para encontrar regalos atentos que devuelven algo. Desde sudaderas calentitas, playeras, botellas de agua, bolsos y pegatinas (stickers) y más, tenemos algo para todos. Cada compra genera concientización sobre la EP y apoya nuestra misión de facilitar la vida a las personas con Parkinson. Es una manera profunda de generar un impacto. Comprar ahora.
13. Para quien ama revivir los recuerdos
Un álbum de fotos personalizado tiene posibilidades ilimitadas y puede ser un gran tema de conversación. Elige un tema con valor sentimental: vacaciones familiares pasadas, una página dedicada a cada persona de la familia, lugares favoritos. Ver fotos del pasado puede ayudar con la memoria.
14. Para el amante de la naturaleza
Si su ser querido no puede esperar a las actividades de primavera o verano, un sombrero nuevo puede ayudarle a protegerse del sol. Los bastones de trekking (o bastones para caminar) también pueden ayudarle a disfrutar de los paseos y las excursiones al aire libre.
15. Para quien necesita darse un gusto
El autocuidado es esencial para las personas con Parkinson y sus aliados en el cuidado. Una lámpara de fototerapia puede ayudar a aliviar o prevenir la depresión estacional, mientras que un juego de lociones de spa puede ayudar a tratar los cambios en la piel, otro síntoma de la EP. Busque productos que traten la piel que pica, grasosa, seca e inflamada, todos ellos síntomas de la EP.
16. Para quien disfruta de ejercitar el cerebro
Los libros de rompecabezas pueden ayudar a dar variedad al día y promover la estimulación mental. La lectura de libros puede ayudar a las personas con la EP a mantener la claridad mental.
17. Para quien ama contar historias
Ayude a su ser querido a contar su historia. Cada semana, Storyworth books le envía a usted (o a su ser querido) una pregunta. Al final del año, las respuestas se encuadernan en un libro. Para compartir la experiencia, programe una llamada semanal con su ser querido y respondan juntos a la pregunta.
Los audiolibros permiten tener las manos libres y disfrutar de la lectura durante los paseos o los viajes largos en auto. Regale una suscripción a Audible de uno a 12 meses. Igualmente, los lectores de libros electrónicos, como Kindle, también pueden facilitar un poco la lectura a las personas con Parkinson. Ayude a configurar el Kindle con texto grande y otros ajustes personalizados.
20. Para quien lo tiene todo
Nunca subestime el regalo de su compañía. Invite a su ser querido al cine, al parque o simplemente ayúdele en casa. ¿Busca algo que hacer juntos? Explore experiencias locales, como museos o una clase de ejercicios para la EP. Encuentre su Chapter de la Parkinson’s Foundation más cercano para conocer las clases que se imparten en su localidad.
¿Aún no sabe qué regalar a su ser querido? Considere hacer un donativo a la Parkinson’s Foundation en su nombre. Como parte de su donativo, puede enviar una eCard o imprimir una tarjeta.
