The Hospital Safety Guide is a resource for people with Parkinson's disease (PD) and their care partners filled with useful tools and information to prepare for and navigate a hospital stay.
Why is hospital safety important for people with Parkinson’s? People with PD are at a higher risk of hospitalization and face many challenges while in the hospital. Hospital staff may not be familiar enough with PD to understand symptoms or realize they can worsen when PD medication is not delivered on time. Careful preparation and clear communication can help minimize complications and recovery time.
The Hospital Safety Guide provides useful information and tools to help you advocate for your best care, including:
The Five Parkinson’s Care Needs
Forms to fill out with personal care details and medication schedules
Tips for care partners
Parkinson’s care information to share with the hospital care team
The Parkinson's Foundation is an official charity partner for the 2027 Walt Disney World Marathon Weekend. By signing up to run as a Parkinson's Champion, you commit to raising funds and awareness for the Parkinson's Foundation. In return, you get access to an entry (bib) to the race in addition to perks and benefits. Register to run now at PDChampionsDisneyWorld.org.
Still need to book your Disney trip but not sure where to start? Maggie Cattle with Spirit of Adventure Travelspecializes in Disney destinations and can help take the stress out of planning. She’s also passionate about the Parkinson’s community. Her father was diagnosed with PD in 2020, the same month her husband began working at the Parkinson’s Foundation. Email Maggie to inquire & book!
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.
10 formas de apoyar a un ser querido con Parkinson
Cuando a un ser querido le diagnostican la enfermedad de Parkinson (EP), pueden surgir muchas emociones y preguntas. ¿Qué puedo hacer para ayudar? ¿Cómo puedo apoyar si no soy el cuidador o no vivo cerca? Siga leyendo para conocer 10 consejos prácticos sobre cómo mostrar su apoyo a un ser querido que vive con la EP.
Ofrezca apoyo a su ser querido y a su cuidador. Una visita de dos horas puede dar al cuidador tiempo para sí mismo. Invite a su ser querido al cine u ofrezca llevarle una comida a casa. Busque maneras de ayudar de forma habitual, como ir a hacer la compra, podar el césped o recoger la medicación.
3. Comuníquese y charle.
Llame o hable por videollamada con su ser querido con Parkinson, incluso si no está seguro de qué decir. Pídale su opinión o cuéntele una anécdota sobre algo que haya ocurrido esta semana.
4. Ofrézcase a ayudar con las citas.
Ofrezca llevar a su ser querido o amigo a una cita médica o de fisioterapia o a una clase grupal de ejercicio. Si vive lejos, intente llevar un registro de las citas y llame a su ser querido para saber cómo le fue.
5. Trabaje en conjunto con el equipo de atención.
Manténgase en contacto con el equipo de atención de su ser querido para asegurarse de que reciba la mejor atención posible. Nuestra Red Global de Atención crea oportunidades para que las personas que viven con la EP accedan a una atención de alta calidad por parte de un equipo de expertos. Encuentre atención experta cerca de usted.
6. Comuníquese.
Comunicar sus pensamientos a su ser querido, así como escuchar sus sentimientos, puede ayudar a aliviar la tensión en su relación. Tenga charlas familiares a menudo para compartir los sentimientos de todos, comprender por lo que está pasando cada individuo y platicar formas de apoyarse mejor mutuamente.
7. Acceda a los recursos locales.
Interactuar con su comunidad local de la EP puede ayudar a toda su familia a encontrar apoyo y a aprender más acerca del Parkinson. Busque su Chapter local y otros recursos cerca de usted.
8. Involúcrese.
Interactuar con la comunidad de la EP es una forma estupenda de mostrar apoyo a su ser querido. Asista a una caminata local de Moving Day, organice su propia recaudación de fondos para apoyar la investigación a través de los Campeones del Parkinson (Parkinson’s Champions) o genere conciencia en su comunidad.
9. Encuentre su sistema de apoyo.
El diagnóstico de Parkinson de un padre o un ser querido puede pesarle mucho. Busque un entorno cómodo y de apoyo para compartir sus pensamientos y sentimientos acerca del Parkinson. Únase a un grupo de apoyo local para conectar con miembros de la comunidad de la EP. Además de los grupos para las personas que viven con Parkinson, también existen grupos de apoyo para familiares. Póngase en contacto con nuestra Línea de Ayuda llamando al 1-800-4PD-INFO (1-800-473-4636), opción 3 para español, para encontrar un grupo de apoyo cerca de usted.
10. Practica el autocuidado.
Al cuidar o apoyar a una persona que vive con Parkinson, los cuidadores secundarios pueden experimentar agotamiento. Abordar estos sentimientos antes de que provoquen fatiga por compasión es vital para una relación sana. Dedíquese tiempo a sí mismo para disfrutar de lo que le gusta e incorpore el autocuidado en su rutina.
Ayudar a un ser querido con Parkinson es diferente para cada individuo. Con la mentalidad y los recursos adecuados, puede ayudar a su ser querido o amigo a superar algunos de los desafíos de la EP.
Living with Uncertainty: Tips for Having a Parent with Parkinson’s
Watching a parent navigate Parkinson’s disease (PD) brings forth a flood of questions about the future. At some point, you may wonder if Parkinson’s is genetic and whether you’ll develop it. Having a parent with PD naturally comes with many concerns. The following five tips offer ways to approach this uncertainty.
1. Understand the role that genetics plays in developing PD.
Genetics cause about 10% to 15% of all Parkinson's, which means their children may have a higher risk of developing PD. If you learn that your parent carries a genetic variation linked to PD, this does not guarantee that you will eventually develop the disease. Still, it is natural to be uncomfortable with that risk, even if it is low.
When a parent has Parkinson’s, you may be thinking about genetic testing. Ask yourself, “Will knowing if I carry a genetic link to PD help me or cause me to worry more?”
If you want to get genetically tested, consult with a genetic counselor first to discuss the potential benefits and drawbacks. Genetic testing helps estimate the risk of developing Parkinson’s but cannot provide your probability of developing the disease or guide you on how to prevent developing PD
Learn More: Parkinson’s & Genetics Research
The Parkinson’s Foundation genetics study, PD GENEration: Mapping the Future of Parkinson's Disease, provides genetic testing and counseling at no cost to people with Parkinson’s. This information can help match people with clinical studies.
2. Prioritize what you can do now for your well-being.
Researchers believe Parkinson's is caused by a combination of genes, environmental and lifestyle influences. While you can’t choose your genes, you can try to make choices that help you stay as healthy as possible, increasing your likelihood for a healthy future overall.
Consider partnering with people for help working on these priorities, or finding a support group that works for you. Just like your parent with PD needs a care team to manage the disease, start working to create a team to support your health goals.
MY PD STORY: Shayna Torres-Warwar
My father lived with PD for the next 20 years. Though there were many sad moments and hardships that I had to watch and help him overcome, there wasn't a day where I didn't see my father smile. Through all the pain and through the slow progression year after year, he clung to life and his freedom to be an individual.
For some adult children, the possibility of developing PD can feel like a looming threat that may strike any day. For others, their PD fears may be mild and fleeting but still unsettling. Big or small, ongoing worries about whether you’ll develop PD can impact your outlook on life and disconnect you from the good around you and wellness within you.
Mindfulness exercises may help you regain focus on the present, and gratitude practices may help you savor life’s small joys. Take breaks from your worries by making time for favorite activities and uplifting relationships. Seek out professional support to help you cope with the unknown if the anxiety is affecting your day-to-day life. Explore our free Mindfulness Mondays events.
4. Tend to your feelings of grief and loss.
Your parent’s Parkinson’s diagnosis and journey has likely impacted you on a deep level. Perhaps they are doing well but you worry about their future. Maybe you are already navigating ambiguous loss, a common experience for people with Parkinson's and their loved ones when there is a loss of emotional connection. Perhaps they have advanced Parkinson’s or have even passed away.
Because of the love you have for your parent, you may experience loss with every stage of their disease, and these losses can affect your body, mind and spirit.
Trying to make healthy choices or keep a positive outlook can be difficult when you are grieving. You are tasked with being hopeful amidst painful feelings. This calls for extra attention to your self-care and maintaining connection with a caring community.
5. Define and create your well-lived life.
Reflect upon what you can do now to feel confident that you are living your life to the fullest, despite what may happen down the road. Ask yourself, “What would a well-lived life look like to me? In what ways am I already living that life? How could I work towards my definition of a well-lived life?”
The following suggestions may also help you as you seek to live your life to the fullest:
Consider diversifying your interests and hobbies.
Try to identify what brings you joy and strive to make more time for it.
Seek out opportunities that may bring your life new sources of meaning and purpose.
Prioritize what will help you feel well and whole.
Additional Resources
Care Partner Program: a series of self-paced online courses designed for care partners
¡Acompañe a la Parkinson's Foundation y a la comunidad del Parkinson en nuestra conferencia anual de California en español!
El programa de este año se centrará en el acceso a la atención del Parkinson. Aprenderá acerca de las diversas disciplinas involucradas en el manejo del Parkinson, conocerá tratamientos prometedores, y aprenderá cómo adaptarse a una enfermedad cambiante.
Este programa es gratuito y está disponible para cualquier persona interesada, incluyendo a las personas con Parkinson y sus familiares, amigos, aliados de cuidado y promotores de salud.
SEGURIDAD COVID: La salud y seguridad de nuestros participantes, patrocinadores, voluntarios y personal son nuestra máxima prioridad. Seguimos pendientes de las recomendaciones de los CDC y nos apegaremos a los lineamientos estatales y locales en vigor el día del evento referentes a COVID. Se harán ajustes, de ser necesario.
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 the Parkinson's Foundation in person for the Kentucky Parkinson's Symposium. Hear about ongoing research, current treatments, and resources available to help you live your best life with Parkinson's.
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.
Expert Speakers:
Zain Guduru, MD
Kentucky Neuroscience Institute
Laura Gusé, MPT
LSVT BIG
Ann Hanley
Parkinson’s Research Fund
Maria Hoctor, SLP
Encompass Health Cardinal Hill
Craig G. van Horne, MD, PhD
Kentucky Neuroscience Institute
Kara Lee, PT, DPT, NCS
University of Kentucky College of Health Sciences
Forrest Sturgill, MD
Kentucky Neuroscience Institute
Tritia R. Yamasaki, MD, PhD
Kentucky Neuroscience Institute
Panel Moderators:
Michael Nsoesie
University of Kentucky College of Medicine
George Quintero, PhD
University of Kentucky Neurorestoration Center
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.
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.
Parkinson’s disease is a chronic and progressive disease that affects both the person with Parkinson’s and the care partner. Considerations need to be made to deal with the present challenges, while also anticipating future caregiving needs. Patsy Ponder Dalton was the caregiver for her husband, David, since he was diagnosed with Parkinson’s at the age of 44. Even after David’s passing, she is still a highly engaged facilitator for two Parkinson’s support groups in Missouri.
In this episode, she provides insight into dealing with the challenges of the disease as it progressed, along with the changes in her caregiving responsibilities. She discusses the dynamic of her and David’s shared decision making over time, provides suggestions for mitigating the physical challenges of the disease by adapting her home environment, and as a care partner, how Patsy needed to make time for her own well-being. Even though David is gone, she still finds comfort and motivation in being part of the Parkinson’s community and maintaining her role in support groups.
Released: November 14, 2023
Patsy Ponder Dalton has led Parkinson's Support Groups for the past 17 years in both Columbia and Lake Ozark, Missouri. For more information on the groups, visit their website here.
Patsy's husband, David, died last year after 28 years of Parkinson's. The Daltons worked as a team for all those years. Patsy can be reached at daltonsinc@aol.com.
Expert Briefing: Hallucinations and Delusions in Parkinson's
November 8, 2023
Psychosis can be a frightening word. In Parkinson’s disease, the medical definition of psychosis usually starts with mild symptoms that can have a big impact on quality of life. Psychosis can vary from severe confusion to seeing things that aren’t there, to believing things that are not true. Find out what causes these symptoms, how people with Parkinson’s might experience them and management strategies.
Join us for a fun, holiday-themed class that provides a comprehensive workout, including strength, balance, coordination, and aerobic exercises. Based on the zany holiday tradition of Festivus, we will perform feats of strength, air grievances about hard to do (but worthwhile!) aerobic exercises, work on balance with our Festivus poles, and finish off with miraculous coordination exercises.
This one-of-a-kind class integrates evidence-based exercises in an upbeat and engaging format. The only equipment required is a pole - could be a cane, tall umbrella, or broom. Seated and standing options will be offered.
Instructors
Dr. Madeleine E. Hackney, PhD
Associate Professor in the Emory School of Medicine
Research Scientist with the Center for Visual and Neurocognitive Rehabilitation at the Atlanta VA
Co-founder of MDT Education Solutions
Dr. Tricia H. Creel, PT, DPT, NCS, Physical Therapist
Co-founder of MDT Education Solutions
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.
Please join us on Saturday, November 11, 2023 for the Give Parkinson's the Boot fundraising event at the Booth Western Art Museum (Booth). This very special event will be held in honor of Seth Hopkins, the Executive Director of the Booth and Parkinson’s battler.
Guests will enjoy a fun evening of great food and musical entertainment, including performances by singer-song writer, Tony Arata, best known for his song “The Dance,” a number-one U.S. country hit for Garth Brooks. This will be a celebratory evening with all funds raised ahead of the event to support the incredible work of the Parkinson's Foundation and the Booth Western Art Museum.
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.
