Maintain a step ahead with the PD-Connect BASIX™ program. A multi-FUNctional class focusing on Balance, Aerobics, Strength, Integration and eXcellence. Engage in our award winning live "Show" and enjoy aerobic activity, dance, strength and dynamic skills to stay ahead of your PD symptoms. The goal is for moderate to vigorous intensity, with modifications in standing and in the chair. Parkinson's-specific fitness couldn't be more fun!
Equipment needed: Chair, weights (or canned goods), and a tennis ball
Please keep a bottle of water nearby. Enjoy the session!
Instructor
Lisa Oei, PT, MSPT, DPT, Physical Therapist, Parkinson's Wellness Coach; PD-Connect, Corte Madera, California
SteF Farina, MCT
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.
La enfermedad de Parkinson 101: lo que usted y su familia deben saber Regístrese Aquí
Acompañe a la Parkinson’s Foundation para aprender acerca de las causas, los síntomas y el manejo de la enfermedad de Parkinson, así como la participación en investigaciones.
Presentadora
Andrea Fuentes, MD
Profesora adjunta de clínica
Neurología y ciencia neurológica
Stanford Medicine
Explorando terapias complementarias para el Parkinson: los beneficios de la terapia física, del habla y ocupacional Regístrese Aquí
¡Acompáñenos en una charla en línea donde profundizamos en el mundo de las terapias complementarias y su papel fundamental en mejorar la calidad de vida de las personas que viven con la enfermedad de Parkinson!
Esta sesión interactiva se centrará en la importancia de la fisioterapia, la terapia del habla y la terapia ocupacional, brindando una comprensión integral de sus roles y los numerosos beneficios que ofrecen. No se pierda la oportunidad de participar en demostraciones en vivo de ejercicios terapéuticos diseñados específicamente para pacientes con Parkinson.
Presentadoras
Ana Sanchez Junkin, PT, DPT, NCS
Especialista clínica en neurología certificada
Profesora adjunta
MGH Institute of Health Professions
Dora Jasso, MA, CCC-SLP, CBIS
Patóloga del habla y el lenguaje
MountainView Regional Medical Center
Pamela Talero Cabrejo, OTD, BSOT(Col), OTR/L, CPAM, COT
Profesora adjunta
Programa post-profesional de terapia ocupacional
Departamento de terapia ocupacional
Jefferson College of Rehabilitation Sciences
Thomas Jefferson University
Avances en el tratamiento del Parkinson: ¿Qué hay de nuevo? Regístrese Aquí
Existen muchos medicamentos para mejorar la calidad de vida de las personas con la enfermedad de Parkinson (EP). Sin embargo, cada individuo responde de manera diferente a los medicamentos. Lo que funciona para uno no necesariamente funciona para otro.
Conozca los avances en los tratamientos para la enfermedad de Parkinson, tanto para los síntomas motores como no motores y dónde nos encontramos en el camino hacia la medicina personalizada.
Presentador
Ramon Rodriguez, MD, FAAN
Especialista en neurología
Neurology One
EP Salud En Casa es presentado por Light of Day Foundation, cuya generosidad ha hecho posible esta programación.
Raise Awareness
11 Goals You Helped Us Accomplish in 2023
In a word, momentum was the theme for the Parkinson’s Foundation in 2023. Thanks to the Parkinson’s community, especially our donors, we worked hard to make life better for people with Parkinson’s disease (PD) through advancing research and prioritizing access to care.
Here are 11 ways you helped us keep the momentum in 2023:
In July 2023, we published a study that found that only 50% of people with Parkinson’s saw a general neurologist. As a result of these findings, we are expanding disease-specific training to neurologists and other healthcare providers, and pursuing ways to improve access to care across all demographic and population groups.
2. Provided Genetic Testing and Counseling to 11,000 people with PD
In 2023, our global genetics study PD GENEration: Mapping The Future of Parkinson’s Disease reached the milestone of providing genetic testing and counseling to 11,000 people with Parkinson’s. PD GENEration test results empower people, help them work alongside their doctor to tailor PD treatment, and can match them to gene-specific clinical trials. Thus far, PD GENEration data shows that 12.7% of people with Parkinson’s have a genetic link to the disease — much higher than the originally believed 5-10%.
To bring specialized Parkinson’s care to more people, we designate medical centers that know how to treat this complicated disease. In 2023, we designated eight new centers as part of our Global Care Network, with the first-ever designations in Wisconsin and Washington, and the country of Japan.
The Parkinson’s Virtual Biotech, a partnership with the Parkinson’s UK, is currently funding 13 potential medications in development that either address PD symptoms or aim to slow, stop, or prevent the disease altogether. This initiative gets us closer to delivering life-changing treatments in years, not decades.
A Parkinson’s breakthrough can happen at any time, in any lab, which is why we directly fund scientists who are conducting innovative studies attacking Parkinson’s from every angle. In 2023, we awarded $2.8 million across 30 promising research grants.
Dr. Wang is exploring a new way to target the cause of PD by using RNA-degrading technology. His lab is working to prevent over-accumulation of alpha-synuclein (a protein) in the brain, hopefully paving the way to halt the development of the disease.
Ensuring diversity and inclusivity in Parkinson’s research is critical to accelerating breakthroughs toward a cure. In 2023, we partnered with Morehouse Healthcare to expand genetic research in the Black community, making Morehouse the first historically Black institution of medicine to become a PD GENEration research site.
We awarded nearly $1 million in community grants to PD programs across 35 states. From non-contact boxing classes to educational events and wellness programs, we have invested more than $10.4 million in 787 community-based programs since 2011.
Even though 90,000 Americans are diagnosed with Parkinson’s every year, most healthcare professionals — including nurses, pharmacists and general practitioners — do not receive in-depth PD care training. We added new accredited online courses to our Education Series for Community Providers, which are designed to improve treatment and outcomes for people with Parkinson’s.
We launched 50 new Spanish pages on Parkinson.org. From symptoms to managing PD, these pages are designed to reach the Spanish-speaking Parkinson’s community and connect them to key information and tools.
10. Raised $3.5 million through Parkinson’s Champions
Parkinson’s Champions are a dedicated group of people in the PD community who fundraise to help us fight Parkinson’s. Parkinson’s Champions do it all, they run in prestigious races, cycle for Parkinson’s Revolution, host Facebook fundraisers, and more. In 2023, Parkinson’s Champions raised $3.5 million to propel us towards a cure.
Photo credit: Tricia Baron
On April 11, the producing team behind the Broadway hit, A Beautiful Noise: The Neil Diamond Musical presented $500,000 to the Parkinson’s Foundation in honor of legendary singer, songwriter and performer Neil Diamond, who is living with Parkinson’s.
Every year, the top neurologists and Parkinson’s experts in the world attend renowned conferences to share new information about PD treatments and research. In 2023, the Parkinson’s Foundation shared numerous research and care findings at two premier conferences.
As much as we accomplished in 2023, we are committed to doing more for the PD community in 2024. Your continued support is the only way we can make that happen. Thank you.
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 hopes to be an official charity partner for the 2026 Disneyland Half Marathon Weekend. By signing up to run as a Parkinson's Champion you commit to raising funds and awareness for the Parkinson's Foundation, and in return you get access to a free entry (bib) to the race in addition to tons of other fun benefits and perks. You can learn more about our program and join our interest list at Run4PD.org.
Fundraising Commitments:
VIP - $5,000
Dumbo Double Dare (Half & 10k) - $1,500
Half - $1,000
5k/10k - $750
Honorary Champion - $500
The Disneyland Resort® will host four fun-filled days of events, featuring some of your favorite Disney Friends. Whether Guests start their day “barking along” a 3.1- mile adventure or “get their ducks in a row” for 6.2 miles ... or even say “see ya real soon” as they embark for an epic 13.1 miles, our Disney friends will be there to cheer them on!! From the start line to the finish line, the Disneyland Half Marathon Weekend will ensure that Every Mile is Magic!
Looking for travel support? Sign up for a free consultation with our wonderful friends at Magical Park Vacations at THIS LINK (whether you end up running with us or not). They have deep knowledge of the parks and traveling with a family member who has Parkinson’s disease.
NOTE: Registration for this race includes access to the Disneyland Resort® amusement parks for the race event only. To “ride-the-rides” you would need to purchase a separate ticket to the parks. There may be the opportunity for friends and family to come cheer you on without needing to purchase entry to the park, but this will be announced later by the runDisney organization at their discretion.
Are you looking for a fun way to volunteer for the Parkinson's Foundation & raise your voice while raising awareness? Come out and cheer on our incredible athletes! Learn more and apply at Parkinson.org/ChampionsCheer.
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.
