Science News

Un estudio demuestra que permanecer activo en el hospital beneficia a las personas con Parkinson

Noticias científicas blog

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.

Movilidad de los pacientes

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.

Estadística de pacientes hospitalizados

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.

Nurse assisting patient out of hospital bed

¿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. 

Science News

Study Shows Staying Active in the Hospital Benefits People with Parkinson’s

Parkinson's Foundation Science News blogs

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 benefits graphic

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 statistic

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.

Nurse assisting patient out of hospital bed

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. 

Podcasts

Episode 182: Allied Health Spotlight: Partnering with an Occupational Therapist

Allied health professionals are a group of healthcare providers whose role and expertise complement the work of physicians. They include specialists such as physical and occupational therapists, speech-language pathologists, nutritionists, and many more. They are just as important as your Movement Disorders Specialists and Neurologists and play a vital role in creating a comprehensive, well-rounded Parkinson’s care team that attends to your individual needs and addresses your overall well-being.

Many people are familiar with physical and speech therapists, but fewer recognize the valuable benefits of working with an occupational therapist (OT). An OT helps identify the activities that you enjoy and ensures strategies are in place so you can continue doing what matters most. They work with you to adapt your environment, tap into your strengths, and create realistic strategies so you can keep living life on your terms.

In this episode, Karyssa Silva, MS, OTR/L, CLT, an occupational therapist at Aldersbridge Physical Therapy & Wellness Outpatient Center in Rhode Island, shares how she helps people with Parkinson’s with daily tasks and activities that bring them joy. She works closely with people with PD and their loved ones to address physical and mental challenges, empowering them to stay engaged in the activities they value the most.

Steps to Prepare for a Parkinson’s Appointment: Worksheet

Released: August 19, 2025

Raise Awareness

Conversations with 4 Essential Members of Your Parkinson's Care Team

Physical therapist talking with her patient

Living well with Parkinson’s takes a team, and some of the most valuable members may not be who you would typically expect. Healthcare professionals, such as physical and occupational therapists, are essential members of your Parkinson’s care team. They help you maintain mobility, independence and communication, working hand-in-hand with movement disorders specialists and neurologists to create a comprehensive, well-rounded care plan that supports your individual needs and overall well-being. 

To showcase these key members of your Parkinson’s care team, we’re highlighting recent podcast episodes that explore the unique benefits of working with a diverse group of medical specialists.

Who should we talk to next? Let us know

Speech-Language Pathologist

Episode 176: The Challenges of Speech and Swallowing Issues

Parkinson’s affects more than just movement, it can also impact the small muscles in the face, mouth, throat and chest. These changes may impact your ability to eat, speak and swallow, and can influence your confidence in conversations.  A speech-language pathologist will assess speech and swallowing challenges and create a treatment plan to help manage these symptoms.

Melissa Grassia Chisholm, MS, CCC-SLP, a licensed speech pathologist and a voice-swallow airway expert, talks about the importance of getting a baseline evaluation with a speech-language pathologist early on in your PD diagnosis and explains how personalized treatment plans can help address speech and swallowing challenges as your needs evolve.

Physical Therapist

Episode 171: Physical Therapy Recommendations for Exercising Safely

As Parkinson’s progresses, overall movement, balance, and coordination may become more challenging. A physical therapist helps you stay active by developing a custom training plan that meets your goals and physical needs.

Patricia S. Brown, PT, DPT, NCS, of Chapman University in California, a physical therapist who specializes in neurological diseases, shares her recommendations on staying motivated and choosing an exercise program that matches your lifestyle goals.

Pharmacist

Episode 167: Exploring Carbidopa-Levodopa for Treating Parkinson’s Symptoms

Managing Parkinson’s symptoms often involves taking multiple medications, making ongoing conversations with your doctor essential. When questions arise, pharmacists can be readily accessible experts who can help address concerns, identify potential drug interactions, and make you feel more confident about your medications.

Emily Peron, PharmD, MS, and Leslie Cloud, MD, MSc, from Virginia Commonwealth University, a Parkinson’s Foundation Center of Excellence, explain the long-term use considerations of carbidopa-levodopa, the different formulations available, and how to recognize when medication adjustments may be needed.

Episode 181: What to Know Before Taking Nutritional Supplements for Parkinson’s

In addition to prescribed Parkinson’s medications, people with PD may explore complementary or alternative therapies, such as herbs or nutritional supplements. Although often available without a prescription, these supplements can pose risks, especially when taken alongside PD medications. That’s why it’s always advisable to speak with your healthcare provider before starting a new medication or over-the-counter supplement.

Angela Hill, Pharm. D., CRPh, a pharmacist and professor at the University of South Florida, a Parkinson’s Foundation Center of Excellence, talks about the potential side effects and drug interactions that can happen with nutritional supplements, and offers tips for reading and evaluating food labels so you can better understand what you’re taking.

Social Worker

Episode 179: Understanding Depression, Anxiety, and Apathy

Social workers are often the go-to resource for connecting you with specialists and services that can help you navigate the day-to-day realities of Parkinson’s. They offer a wealth of guidance and support to ensure that your voice is heard.

Lauren Zelouf, MSW, LCSW from Penn Medicine’s Parkinson’s Disease & Movement Disorders Center, a Parkinson’s Foundation Center of Excellence, tackles the often-overlooked topic of mental health. She breaks down the differences between depression, anxiety and apathy, and offers coping strategies for managing symptoms and finding support.


Managing Parkinson’s involves a team-based approach. Each healthcare professional brings specialized expertise that can help you move better, speak more confidently, and feel better supported throughout your Parkinson’s journey.

Coming Soon: We’re excited to feature another essential member of the Parkinson’s care team—an occupational therapist—in an upcoming episode.

Subscribe to our podcast. Search for “Substantial Matters: Life and Science of Parkinson’s” on your favorite podcast platform.

Listen to every episode at Parkinson.org/Podcast.

My PD Story

Hikaru-Kamo headshot
Researchers

Hikaru Kamo, MD, PhD

2025 Melvin Yahr Parkinson’s Disease Clinical Research Award

Improving Deep Brain Stimulation Using Artificial Intelligence

Artificial intelligence (AI) provides exciting new opportunities to improve different facets of society, including analysis of complex medical situations and providing guidance to doctors. Hikaru Kamo, MD, PhD, recipient of the 2025 Melvin Yahr Parkinson’s Disease Clinical Research Award, jointly supported by the Parkinson’s Foundation and the International Association of Parkinsonism and Related Disorders (IAPRD), is investigating if AI can be used to automate and optimize deep brain stimulation (DBS) programming.

While medication is the most common way to help manage Parkinson’s disease (PD) symptoms, when drugs begin to lose their effectiveness, DBS may be an option for some. The treatment involves implanting electrodes into the brain that deliver controlled electrical stimulation that counteracts the disruptive symptoms of the disease.

“As DBS technology advances, its complexity increases,” said Dr. Kamo. “Adjusting the stimulation settings requires specialized expertise, which may not always be available. This creates a gap where patients may not receive optimal care unless they are under the supervision of a specialist.”

During his time as chief medical resident at Juntendo University in Japan, Dr. Kamo treated many people with PD and other movement disorders, gaining firsthand experience with providing DBS treatment. Fascinated by this technology, he then earned his PhD by exploring the science behind DBS and how it can be improved.

Hikaru Kamo showing data on computer

In 2024, Dr. Kamo received a travel grant from the Japanese Society of Neurology to join the University of Florida and continue his work. It is there that, thanks to the support of this award, he will study how AI could be used to improve DBS treatments for people with PD.

“Preliminary results suggest that AI-generated settings align with physician-determined settings in about 90% of cases,” says Dr. Kamo. “Currently, physicians adjust DBS settings based on clinical evaluation called monopolar-review, which needs more than 30 minutes of evaluation, but as the technology becomes more complex, AI-assisted programming could simplify the process.”

While the AI programming and coding is complicated, Dr. Kamo’s research study is straightforward. Thirty patients with PD will receive one DBS treatment using settings manually set by a physician, and then another treatment using settings generated by a specialized AI program. This study will be blinded, meaning that both the researchers and participants will not know which treatment is which (physician or AI) until after all data is collected and analyzed.

“If successful, this research could demonstrate that AI-driven DBS programming is as effective, if not more, than traditional methods, offering a more consistent and accessible treatment option for patients,” said Dr. Kamo.

Dr. Kamo’s research has the potential to improve DBS in many ways, specifically, making the treatment more effective and usable for people with PD and doctors.

Meet more Parkinson’s researchers! Explore our My PD Stories featuring PD researchers.

Tips for Daily Living

8 Tips for Traveling with Parkinson’s

A couple walking through the airport with their bags

For many, living with Parkinson’s disease (PD) can make it harder to leave the house on a daily basis, let alone travel to a new time zone. However, as with any trip, planning and preparing can help. This article covers how to factor Parkinson’s into your itinerary.

Check out these eight tips for traveling with Parkinson’s.

1.   Plan to bring all Parkinson’s medications and assistive equipment.

  • Wherever you travel, pack all the medications and dosages you need, plus extras, in your carry-on bag.
  • Familiarize yourself with our Hospital Safety Guide (and download guide components).
  • Remember to pack snacks, a water bottle you can fill at the airport and throughout your trip, and anything else you need to take with medication. 
  • Write your list of essentials before packing.
  • Remember to pack your go-to outfits that make getting dressed a little easier — wrinkle-free items, shorts, pants with elastic waistbands — and assistive devices you regularly use.

2.   Before your trip, check in with your Parkinson’s doctor.

Before jetting off, speak to your Parkinson’s doctor to ensure that you have all the medications you need.

3.   Request assistance in airports.

A few days before you fly, consider requesting special assistance at airports, such as a wheelchair or an electric cart service to help with luggage. This can make traveling much smoother and reduce stress. A physician’s written certificate of need may be required, so call the airline ahead of time.

4.   Call hotels to inquire about accessibility and special accommodations.

When staying at a hotel, call ahead to request a room with accessibility features, such as a room near the elevator or with wheelchair access. Additionally, if traveling from an airport, ask about transportation services ahead of time.

5.   Continue to take medication as prescribed when changing time zones.

It is extremely important to take prescribed medications using your everyday intervals between doses. Set (or keep) your medication alarms the same as when you’re home. Speak to your doctor if you have any questions.

6.   Call our Helpline to find local resources.

If you're planning a longer stay, call the Parkinson’s Foundation Helpline at 1-800-4PD-INFO (1-800-473-4636) to find local Parkinson’s exercise classes and support groups in the area you are visiting.

7.   Check your medical insurance policy.

Be sure to check in with your health insurance before traveling so you are aware of any coverage or lack thereof.

8.   Take your time, relax and enjoy.

Give yourself extra time for everything — it's vacation after all. Enjoy longer meals, take breaks between the sites and activities, rest your legs at a coffee house, and try a sightseeing bus tour. Plan to see fewer sites so you enjoy them more, and when possible, book tickets for sites online ahead of time so you can minimize lines.

travel-tips-infographic

Traveling with Parkinson's can come with added challenges; however, planning can help reduce stress and anxiety. Explore our Traveling with Parkinson’s page for our full list of tips.

Podcasts

Episode 181: What to Know Before Taking Nutritional Supplements for Parkinson’s

People with Parkinson’s disease (PD) may hear, whether through word of mouth or the internet, about herbs or supplements that claim to ease PD symptoms. It’s important to recognize that nutritional supplements are not federally regulated, and there is limited research supporting their overall effectiveness. You should always speak with your healthcare provider before starting a new medication or supplement.

Nutritional supplements can include herbs, vitamins, or other drugs that are often available without a prescription. Since these products are not formally regulated, there is a high risk for potentially dangerous drug interactions when mixed with other medications, regardless of if they are prescribed by a doctor or available over the counter.

In this episode, we speak with Dr. Angela Hill, a pharmacist and professor at the University of South Florida, to better understand the precautions of taking supplements while living with PD. She discusses the potential side effects and risks of taking drugs without fully knowing what’s in their ingredients, as well as the warning signs to watch for. She shares tips for reading and evaluating labels and offers guidance on the type of questions to ask a pharmacist to help decide whether the supplement may be a good fit based on your specific health condition.

During the episode, Dr. Hill mentions additional resources for evaluating herbal medications and understanding medication timing. Click here to view the articles, along with her contact information for any follow-up questions.

Released: July 15, 2025

About Angela M. Hill, Pharm. D., CRPh

Videos & Webinars

Top Hospital Safety Tips

Already a delicate balance, Parkinson's disease (PD) symptom management can be even trickier in the hospital because:

  • People often do not get enough movement opportunities.

  • Parkinson’s medications may not be given following the at-home schedule.

  • Medications that worsen PD are sometimes prescribed.

  • PD medication doses are often delayed or missed. 

In this video, learn how to advocate for your best care while in the hospital. 

Download or order your free Hospital Safety Guide today. 

My PD Story

Cecilia smiling brightly next to a bouquet of flowers at what appears to be a formal event.
People with PD

Cecelia LaValle

Ceceilia LaValle’s family and friends knew her as the life of any party — an entrepreneur, a great artist, a wonderful cook, a devoted sister, wife and mother.

“She was an integral figure in our family and had so much enthusiasm for life,” said Neilia LaValle, one of Ceceilia’s younger sisters.

When Cecelia was diagnosed with Parkinson’s disease (PD) in the early 1990s after noticing rigidity in her left arm, she leaned into her passions and was determined to live life to the fullest as she bravely fought PD.

She had already been diagnosed with PD by the time she met her fourth husband, and ultimate care partner, Jimmie Amox, while they were enrolled as graduate students at Louisiana Tech University. Though she made several careers for herself, art always drew her back in.

“Her art really blossomed during her graduate studies,” said Deanna LaValle High, one of Ceceilia’s younger sisters. “I would say that Cecelia was at the peak of her artistic capability and showing every sign of continuing to grow as an artist, when she was diagnosed with Parkinson's. She continued to make art until the disease finally robbed her of that ability.”

Cecelia’s family rallied around her, researching PD and supporting her as she explored treatment options. Jimmie said she was determined to continue living her life and was invested in finding PD care that allowed her to do so. She consulted with several doctors around the world and tried many treatments to alleviate her symptoms, including the hallucinations.

“I lost my mom long before she passed away, due to the hallucinations,” said Michele Smith, Cecelia’s daughter. “It was difficult for our family to watch her deteriorate.”

Before Cecelia passed away in 2016, Neilia spoke to a friend who had recently started her own non-profit to raise money for breast cancer, which inspired Neilia to do the same and support a cause near to her heart — Parkinson’s disease.

“Seeing what my sister was going through made me want to help find a cure for Parkinson’s,” Neilia said. “I don’t want other people to go through what my family and my sister went through.”

Neilia uses her foundation to support organizations like the Parkinson’s Foundation that are working to find a cure for PD. She’s proud to honor her sister and to continue her fight for a cure.

“It seems like more and more people are directly impacted by Parkinson’s. We need to get more people actively involved in supporting organizations that are looking for a cure, like the Parkinson’s Foundation. There is hope, and that is what we need to use to keep us going.”
- Neilia LaValle

Like Neilia, other members of Cecelia’s family are inspired by the Parkinson’s Foundation and happy to see more resources for people with Parkinson’s, care partners and their families.

“Many of the current treatments and resources available now were not available when Cecelia was diagnosed,” said Jimmie. “Organizations like the Parkinson’s Foundation have changed that. If I could offer advice to those newly diagnosed with Parkinson's disease or people entering the Parkinson's care partner world, I would say that the first thing you need in your toolbox is love for each other. Grow that love every day. Get to truly know each other and constantly question reactions to new experiences with this disease.”

“If you are new to Parkinson’s, take stock of yourself and your priorities,” said Deanna. “And, if you are inclined to live life fully like Cecelia, do it, do it, do it. As best you can.”

With your support, we can invest in research that will help us find new treatments and a cure for Parkinson’s in years, not decades. To make a donation, visit Parkinson.org/Donate.

Podcasts

Episode 180: Make Every Minute Count: Optimizing Your Parkinson’s Doctor Visits

Medical appointments can feel overwhelming – there may be many questions on your mind and not enough time to address everything with your doctor. Preparing a list of questions and concerns ahead of time can help you focus on what matters most to you and ensure you’re actively advocating for your care. To support this process, the Parkinson’s Foundation created a worksheet that offers a step-by-step guide for identifying and prioritizing your top concerns.

Advocating for yourself during appointments can be challenging, and at times, uncomfortable. Speaking up is essential to make sure your top needs are heard and addressed. In this episode, we speak with Dr. Taylor Rush, a Health Psychologist and director of Behavioral Services and Interdisciplinary Programs at the Cleveland Clinic in Ohio. She shares her recommendations for how to prepare before, during, and after a visit with your Parkinson’s doctor, take a proactive role in managing your care, and access helpful resources to support you throughout your Parkinson’s journey.

Released: June 24, 2025

About Taylor Rush, PhD

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