Nothing can prepare you for hearing the words “you have Parkinson’s.” From confusion to relief, however you feel after you or a loved one has been diagnosed is completely natural.

In this article, we outline five steps to help you process a new Parkinson’s disease (PD) diagnosis, including PD Stories from people after receiving their own life-altering news.

1. Determine Your Goals

Planning ahead with a new medical diagnosis can feel overwhelming if you do not know where to find resources and support. This is especially true if you were previously unfamiliar with Parkinson’s and your options for care. Equipping yourself with up-to-date information can help you set short and long-term goals to navigate your journey with PD.

Armed with information on PD, you’re ready to create healthy habits based on what is most meaningful to you. Read more about setting specific, realistic goals for yourself through diet and nutrition and find inspiration from our PD-tailored fitness videos that feature a different at-home workout every week, including balance and coordination exercises to meet your fitness goals.

2. Find an Expert

There are many benefits to seeking advice from a PD expert as you process a new diagnosis. We recommend receiving care from a movement disorders specialist, or a neurologist who has completed training in treating Parkinson’s disease. However, these specialists may not be available depending on where you live.

Finding a specialist doesn’t have to be a daunting task. Here are some ways you can find a PD specialist:

• Find a Global Care Network center that provides expert care near you
• Contact the Parkinson’s Foundation Helpline at 1-800-4PD-INFO (1-800-473-4636) or Helpline@Parkinson.org for a referral
• Ask your primary care physician for a referral
• Contact your insurance provider for a list of neurologists or movement disorders specialists in your network
• Seek referrals from other people living with Parkinson's

3. Find Someone to Talk To & Build Your Support Network

Parkinson’s can be difficult to talk about. Voicing your feelings and concerns is an important step in processing a PD diagnosis. Additionally, there are many benefits to talking with a social worker to help relieve your anxiety and create a plan.

We recommend joining PD Conversations, a place to ask questions, connect with others living with Parkinson’s and be part of a support network. This is a great solution for those who are not yet ready to share their diagnosis publicly. You can also follow us on social media to stay connected.

 4. Create Healthy Habits

As you process a diagnosis, setting personal goals to stay mentally and physically healthy can help. Meet Frank below to learn from his personal experience of creating healthy habits following a diagnosis of young-onset PD.

To learn more about creating healthy habits, explore our webinars featuring PD experts, aimed at providing education and addressing your most pressing questions.

5. Be Active

Living well with PD is possible. A diagnosis and receiving PD-tailored care can help you feel motivated and ready to learn how to live with PD on your terms. Whether you are ready to set a new exercise routine, prioritize nutrition, or get involved as a volunteer or research advocate, we can help you get started.

Find your Parkinson’s community and local PD-tailored wellness and exercise classes by visiting your nearest Parkinson’s Foundation Chapter website. Help raise awareness through activities, such as Moving Day events, our Parkinson’s Revolution indoor cycling experience and local programs to help ensure that people with Parkinson's, their families, and care partners live their best life possible.

Ready to get involved? Learn about volunteering with the Parkinson’s Foundation or help advance Parkinson’s research when you enroll in our PD GENEration study!

Top Newly Diagnosed Resources

Explore these tools designed for anyone who has been recently diagnosed with Parkinson’s:

1. New to Parkinson’s: webpage with information and links to valuable resources.

2. Helpline: contact 1-800-4PD-INFO (1-800-473-4636) or Helpline@Parkinson.org for answers to your PD questions and referrals to local PD specialists and classes.

3. Find resources In Your Area: find a PD specialist and resources near you and find your nearest chapter.

4. Living Your Best Life: A Guide to Parkinson’s Disease: this book is filled with tools to help you process and cope with Parkinson’s. Download the book or listen to the audiobook.

As you learn how to live with Parkinson’s, we are here to assist and empower you at every stage. When you’re ready, explore our Newly Diagnosed Guide.

Las investigaciones demuestran que las personas con la enfermedad de Parkinson (EP) son hospitalizadas más a menudo, llegan a la sala de urgencias con más frecuencia y son más vulnerables a tener complicaciones durante su hospitalización.

El ejercicio y la actividad física no sólo ayudan a las personas con Parkinson a mantener o mejorar la movilidad, la flexibilidad y el equilibrio a la hora de controlar los síntomas, sino que el movimiento habitual puede ofrecer grandes beneficios en el hospital. Como paciente hospitalizado, el movimiento —a menudo con apoyo de fisioterapia y terapia ocupacional— es esencial para prevenir caídas y minimizar complicaciones.

Un nuevo estudio descubre que mantenerse activo (movilidad en el hospital) beneficia a las personas con Parkinson. Publicado en Parkinsonism & Related Disorders, el estudio apoyado por la Parkinson's Foundation examina cómo el Programa Move to Heal de los Hospitales Universitarios (UH, por sus siglas en inglés) ubicados en Cleveland, Ohio, un programa de movilidad en todo el sistema hospitalario que busca movilizar a todos los pacientes hospitalizados al menos tres veces al día, afecta a los pacientes con la EP.

La movilidad de los pacientes hospitalizados se refiere al movimiento seguro durante la estancia en el hospital (dentro y fuera de la cama) con la aprobación y el apoyo de un equipo de atención médica. Los beneficios incluyen:

• Reducción de la pérdida muscular
• Dormir mejor
• Mejor concentración

La falta de movilidad de los pacientes de edad avanzada durante su hospitalización se asocia a una menor movilidad y a un aumento de la mortalidad tras el alta.

Resultados del estudio 

Para aprender más acerca de los resultados de la movilidad hospitalaria para personas con la EP, el estudio utilizó datos de pacientes ingresados al hospital por más de 24 horas entre febrero y septiembre de 2023, comparando 300 pacientes hospitalizados con Parkinson con 12,000 pacientes sin la EP. Cada grupo se dividió a su vez en un:

• Grupo activo: tres o más movilizaciones al día. Las movilizaciones incluían rango de movimiento activo o pasivo realizado en la cama, sentado en el borde de la cama, sentado en una silla o en una silla retrete, de pie y caminando.
• Grupo inactivo: menos de tres movilizaciones al día.

Los datos mostraron que los pacientes hospitalizados con la EP del grupo activo tuvieron una estancia hospitalaria más corta y una mayor probabilidad de volver a casa tras la hospitalización. Esto apoya las Recomendaciones de atención hospitalaria de la Parkinson's Foundation, que promueve que las personas con la EP se movilicen tres veces al día bajo supervisión profesional. 

En particular, todos los pacientes que permanecieron activos durante su hospitalización tuvieron un 50% menos de probabilidades de morir a los 30 días de recibir el alta hospitalaria y un 30% menos de probabilidades a los 90 días.

Los pacientes hospitalizados que se mantuvieron activos tuvieron un 74% menos de probabilidades de ser dados de alta para cuidados paliativos o de morir, en comparación con los pacientes inactivos.

En general, el estudio sugiere que la movilización frecuente disminuye significativamente la duración de la estancia y aumenta la probabilidad de ser dado de alta para volver a casa para los pacientes con Parkinson, en hospitales con programas de movilización.

Destacados 

• La Parkinson’s Foundation se asoció con los Hospitales Universitarios (UH, por sus siglas en inglés) para comprender mejor cómo afecta a las personas con Parkinson el hecho de permanecer activas en el hospital (lo que se denomina movilización de los pacientes).

• Los datos del estudio compararon a 300 personas hospitalizadas con Parkinson con 12,000 pacientes hospitalizados sin Parkinson.

• Las personas con Parkinson que fueron movilizadas al menos tres veces al día durante su ingreso tuvieron una estancia más corta y fueron dadas de alta para volver a casa (en lugar de a un centro asistencial) con más frecuencia que aquellas que no fueron movilizadas al menos tres veces al día.

• Los pacientes que permanecieron activos durante su hospitalización tuvieron un 50% menos de probabilidades de morir a los 30 días de recibir el alta hospitalaria y un 30% menos de probabilidades a los 90 días.

• Ambos grupos que estuvieron activos (con y sin la EP) tuvieron estancias hospitalarias más cortas que el grupo inactivo, pero el impacto fue más significativo para las personas con la EP. 

• Sólo el grupo de la EP activo mostró una mayor probabilidad de volver a casa tras el alta.

¿Qué significa esto? 

Para las personas con Parkinson, mantener la movilidad en el hospital puede significar una enorme diferencia a la hora de recuperarse y tener más probabilidades de volver a casa en lugar de a otro centro asistencial.

La movilidad en las personas con Parkinson es un aspecto importante del manejo de los síntomas de la EP, tanto en casa como en el hospital. Este estudio demuestra que las personas con la EP tienden a experimentar estancias hospitalarias más largas y a tener mayores tasas de mortalidad si no se mueven con regularidad en el hospital.

Para muchos, puede resultar difícil promover un movimiento regular y programado cuando enfrentan problemas de salud o complicaciones que los llevan al hospital. Este estudio apoya los esfuerzos de la Parkinson's Foundation para promover programas de movilización de los pacientes hospitalizados en todo el sistema, mostrando beneficios significativos para los pacientes y los hospitales, especialmente aquellos con la EP. Con el tiempo, estos programas pueden ayudar a mejorar la calidad de la atención.

¿Qué significan estos hallazgos para las personas con la EP en este momento?

Cada año, más de 300,000 personas con Parkinson reciben atención en un hospital en los EE.UU. Sin embargo, se estima que aproximadamente una de cada seis personas con Parkinson experimenta complicaciones evitables durante una estancia hospitalaria.

No obstante, hay muchas formas de defenderse cuando se prepara para una estancia hospitalaria o la experimenta. La Guía de seguridad hospitalaria contiene herramientas e información útiles para ayudarle durante su próxima visita. Esta guía destaca cinco necesidades de atención hospitalaria, con consejos sobre cómo hablar con el equipo de atención acerca del movimiento dentro del hospital y posteriormente.

Aprenda más 

La Parkinson’s Foundation cree en el empoderamiento de la comunidad de Parkinson a través de la educación. Aprenda más acerca de la EP y la movilidad en nuestros recursos mencionados abajo o llame a nuestra Línea de Ayuda gratuita al 1-800-4PD-INFO (1- 800- 473-4636), opción 3 para español, para obtener respuestas a sus preguntas acerca del Parkinson. 

• Movimiento seguro en el hospital 

• Guía de seguridad hospitalaria

• Guía para recién diagnosticados

• 4 formas en que las personas con Parkinson pueden evitar complicaciones hospitalarias frecuentes

• Para profesionales: Nuestra estrategia de atención: la iniciativa de cuidados hospitalarios

Research shows that people with Parkinson’s disease (PD) are hospitalized more often, visit emergency rooms more frequently, and are more vulnerable to complications while hospitalized.

Exercise and physical activity not only help people with Parkinson’s maintain or improve mobility, flexibility and balance when it comes to managing symptoms, but regular movement can mean big benefits in the hospital. As a hospital patient, movement — often with support from physical and occupational therapy — is essential for preventing falls and minimizing complications.

A new study finds that staying active (inpatient mobility) in the hospital benefits people with Parkinson’s. Published in Parkinsonism & Related Disorders, the Parkinson’s Foundation-supported study looks at how University Hospitals (UH) located in Cleveland, OH, Move to Heal Program, a hospital system-wide mobility program that aims to mobilize all inpatients at least three times daily, affects patients with PD.

Inpatient mobility refers to safe movement during a hospital stay (in and out of bed) with the approval and support of a care team. Benefits include:

• Reduced muscle loss

• Better sleep

• Improved focus

A lack of mobility in older patients while hospitalized is associated with reduced mobility and increased mortality after being discharged.

Study Results 

To learn more about the outcomes of inpatient mobility for people with PD, the study used data from patients admitted at the hospital for more than 24 hours between February to September 2023, comparing 300 hospital patients with Parkinson’s to 12,000 patients without PD. Each group was further divided into an:

• Active group: three mobilizations or more per day. Mobilizations included active or passive range of motion performed in bed, sitting at the edge of the bed, sitting on a chair or bedside commode, standing and walking.

• Inactive group: less than three mobilizations per day.

Data showed that inpatients with PD in the active group had a shorter hospital stay and higher probability of returning home after hospitalization. This supports the Parkinson’s Foundation Hospital Care Recommendations, which advocates that people with PD mobilize three times a day under professional supervision.  

Notably, all patients who stayed active while hospitalized were 50% less likely to die within 30 days of being released from a hospital stay, and 30% lower odds within 90 days.

Hospitalized patients who stayed active were 74% less likely to be discharged to hospice care or die compared to inactive patients.

Overall, the study suggests that frequent mobilization significantly decreases length of stay and likelihood to be discharged home for patients with Parkinson’s, in hospitals with mobilization programs.

Highlights 

• The Parkinson’s Foundation partnered with University Hospitals to better understand how staying active in the hospital (called inpatient mobility) impacts people with Parkinson’s.

• Study data compared 300 hospitalized people with Parkinson’s with 12,000 hospitalized patients without Parkinson’s.

• People with Parkinson’s who were mobilized at least three times a day while admitted had a shorter length of stay and were more often discharged to home (rather than a care facility) than those who were not mobilized at least three times per day.

• Patients who stayed active while hospitalized had 50% lower odds of dying within 30 days of being released from a hospital stay, and 30% lower odds within 90 days.

• Both groups that were active (with and without PD) had shorter hospital stays than the inactive group, but the impact was more significant for those with PD. 

• Only the active PD group showed an increased likelihood of going home after discharge.

What does this mean? 

For people with Parkinson’s, staying mobile in the hospital can make an enormous difference when it comes to recovery and being more likely to go home instead of another care facility.

Mobility in people with Parkinson’s is an important aspect of managing PD symptoms, while at home and in the hospital. This study shows that people with PD are prone to longer hospital stays and increased mortality rates if not moving regularly in the hospital.

For many, it can be difficult to advocate for regular, scheduled movement when you are facing health concerns or complications that lead you to the hospital. This study supports Parkinson’s Foundation efforts to promote system-wide inpatient mobility programs, showing significant benefits to patients and hospitals — especially those with PD. Over time, these programs can help improve quality of care.

What do these findings mean to the people with PD right now? 

Each year more than 300,000 people with Parkinson’s receive care at a hospital in the U.S. Unfortunately, approximately one in six people with Parkinson’s are estimated to experience avoidable complications during a hospital stay.

However, there are many ways to advocate for yourself when preparing for or experiencing a hospital stay. The Hospital Safety Guide contains useful tools and information to help you during your next visit. This guide highlights five hospital care needs, with advice on how to talk with your care team regarding movement in the hospital and beyond.

Learn More 

The Parkinson’s Foundation believes in empowering the Parkinson’s community through education. Learn more about PD and mobility in our below resources, or by calling our free Helpline at 1-800-4PD-INFO (1-800-473-4636) for answers to your Parkinson’s questions. 

• Safe Movement in the Hospital  

• Hospital Safety Guide

• How to Communicate Your 5 Parkinson’s Care Needs During a Hospital Visit

• For Professionals: Our Care Strategy: The Hospital Care Initiative