Parkinson’s disease (PD) looks different for everyone. Symptoms vary, as do the ways people maintain and improve their quality of life. People with Parkinson’s often discover strategies that work best for them, whether it’s staying physically active, keeping mentally engaged, connecting with others or practicing gratitude.

The Parkinson’s Foundation offers a wide range of resources to help people manage their symptoms. Additionally, some of the most meaningful insights come from those living with Parkinson’s themselves.

We asked our social media community to share what has helped them live well with Parkinson’s. Here’s what they had to say:

Exercise and Movement

Staying physically active was one of the most popular strategies. Research shows that regular exercise can improve mobility, balance, mood and even cognitive function for people living with Parkinson’s. Many described movement not just as therapy, but as empowerment.

“Exercise and staying mentally active have helped me the most. I was diagnosed in 2018. Don’t give up. Sometimes I have to force myself to exercise, but I always feel better when I do.” - Val

“I was diagnosed at age 75 and I plan on being here for a long time. I exercise every day, walk a couple of miles, take my medication and listen to my doctor.” - Frank

“A dance class called Dance Health Alliance has helped me a lot. You can even do it sitting in a chair if you have balance issues. It’s definitely helped improve my walking.” - Christine

Exercise at home with our PD Health@Home Fitness Friday videos. Sign up for our next live Fitness Friday or check out our On-Demand videos right now.

Mental Engagement and Hobbies

Keeping the brain active can be just as important as keeping the body moving. Engaging in hobbies, learning new skills and staying mentally stimulated may support cognitive health and overall well-being.

For many, creative expression and intellectual engagement provide both joy and a sense of purpose.

“Learning new tunes and staying musically active has been a real benefit. I’ve been a professional musician for over 50 years and staying active in my music career — even at age 71 — has helped keep my Parkinson’s under control.” - Joe

“I write short stories, read, belong to a book club and take part in quizzes.” - Val

Mindset, Hope and Perspective

A positive outlook doesn’t erase the challenges of Parkinson’s — but many people shared that mindset plays a powerful role in how they navigate them.

“I was diagnosed 25 years ago, in my 40s and I’m now in my 70s. Focus on what you still have. If you have love, learning and laughter — even a friendly phone call or a good book — you are lucky.” - Fillis

“What truly helped me was hope with purpose. When I stopped seeing Parkinson’s as an ending and started seeing it as a teacher, everything changed. Healing isn’t just about the body — it’s about the mind, heart and spirit working together.” - Ellen

“After my diagnosis, I started learning about Parkinson’s and its treatments. I’ve learned to accept it, appreciate the small blessings, exercise, take my medication as prescribed and live with a positive attitude.” - Daisy

These reflections remind us that resilience can take many forms, including acceptance, gratitude, determination or simply continuing forward one day at a time.

Community and Support

Connecting with others who understand Parkinson’s can reduce isolation and provide encouragement. A strong online or in-person support network often makes a meaningful difference.

“As a woman in my 30s with young-onset Parkinson’s, community has helped me the most. Exercise is second and reading The Parkinson’s Plan has also been incredibly helpful.” - Erin

“Joining the Facebook group Life With Parkinson’s and accessing resources like yours has been extremely helpful. I also participated in an eight-week class for the newly diagnosed through my local hospital.” - Lin 

Many people living with Parkinson’s find that sharing experiences, learning together and supporting one another strengthens both confidence and quality of life.

Explore our Community Network groups that empower key groups within the PD community — including people who are newly diagnosed, women with PD, those with early-onset PD and more! Find your community.

Learning about PD

Learning more about Parkinson’s can bring clarity, reassurance and empowerment. Understanding movement and non-movement symptoms can help people feel more in control of their care.

“Education has helped me so much. I didn’t realize many of my symptoms were part of Parkinson’s. Learning about the disease helped me understand that I’m not crazy. Physical therapy has also made a huge difference.” - Sharon

When people understand what is happening in their brain and bodies, it can ease uncertainty and make it easier to advocate for the care they need.

Explore Parkinson’s resources that address your most concerning symptoms right now.

Living Well with Parkinson’s

Living well with Parkinson’s does not mean symptoms disappear — it means finding tools, support and perspective that help you move forward.

As these shared experiences show, there is no single path. What works for one person may look different for another, and that’s okay.

If you’re looking for support, resources or ways to connect, we are here to help. Explore resources and information at Parkinson.org or contact our Helpline at 1-800-4PD-INFO (1-800-473-4636).

Pregúntele a PAM (mensajero de asistencia para el Parkinson) es una herramienta de chat impulsada por IA de parte de la Parkinson’s Foundation que brinda respuestas confiables con base en evidencia acerca de la enfermedad de Parkinson (EP), en cualquier momento, en cualquier lugar.

Vivir con la enfermedad de Parkinson (EP) a menudo conlleva preguntas acerca de los síntomas, tratamientos, los cuidados, la investigación o qué hacer después del diagnóstico. Ahora, obtener información confiable es más rápido y fácil que nunca.

PAM se creó para darle a las personas con Parkinson y sus cuidadores acceso instantáneo a información precisa y arraigada en la Parkinson’s Foundation, 24 horas al día, siete días a la semana.

¿Qué es PAM?

PAM se refiere a las siglas en inglés, Parkinson’s Assistance Messenger. Usa inteligencia artificial (IA) para brindar respuestas con base en recursos confiables de la Parkinson’s Foundation.

Las plataformas de chat, —como ChatGPT y ahora PAM—,  son aplicaciones avanzadas que usan la IA y el aprendizaje computarizado para simular la conversación humana. Estas plataformas no siguen guiones pre-escritos, sino que entienden el contexto, la intención y aprenden de las interacciones para brindar respuestas más precisas y personalizadas.

PAM está diseñado para entregar información clara y confiable acerca de la enfermedad de Parkinson en cualquier momento del día. PAM puede apoyar la vida con la EP, a los cuidadores y a cualquiera afectado por la EP. Mientras que PAM brinda útil información educativa, no sustituye la asesoría médica de su proveedor de asistencia médica.

¿Qué puedo preguntarle a PAM?

Puede hacerle preguntas a PAM acerca de cualquier cosa relacionada con la enfermedad de Parkinson, incluyendo síntomas, diagnósticos, opciones de tratamiento, seguridad hospitalaria, apoyo al aliado en el cuidado, investigaciones y más. Puede escribir preguntas u oraciones completas, como:

• Me diagnosticaron de Parkinson. ¿Qué puedo hacer ahora?

• ¿El ejercicio ayuda a manejar los síntomas del Parkinson?

• ¿Qué debería saber si tengo la EP y necesito ir al hospital?

• ¿Cómo puedo ayudar a mi padre/madre que tiene Parkinson?

• ¿El Parkinson es genético? ¿Debería considerar hacerme una prueba genética?

PAM entiende tanto español como inglés.

HÁGALE UNA PREGUNTA A PAM AHORA

¿Mi información es privada?

Sí. PAM es seguro y confidencial. Si elige enviar su información de contacto para dar seguimiento a través de su conversación con PAM, será compartida de forma segura con el equipo de la Línea de Ayuda para que podamos darle un mejor apoyo. PAM no almacena su información personal de salud más allá de lo requerido para responder a su solicitud.

Para más información, revise la política de privacidad de la Parkinson’s Foundation.

¿Cómo es diferente PAM de la Línea de Ayuda de la Parkinson’s Foundation?

PAM siempre está disponible para brindar respuestas instantáneas en línea, cuando las necesite. La Línea de Ayuda de la Parkinson’s Foundation lo conecta con especialistas de la información que ofrecen asistencia personalizada en horarios laborales.

Contacte a nuestra Línea de Ayuda para:

• Respuestas a sus preguntas de la EP: Diagnóstico de la EP, tratamiento, vida diaria, preocupaciones de los cuidadores, investigaciones, ensayos clínicos, Parkinson avanzado y más.

• Referencias de profesionales de la salud y recursos comunitarios para apoyo local.

• Información personalizada: brindamos versiones digitales o impresas de nuestros recursos incluyendo libros, hojas informativas y enlaces a programas educativos y locales.

• Recursos para cualquiera en la comunidad de la EP, así como quienes les brindan cuidado y servicios.

Ambos servicios están para usted; elija la alternativa que mejor cubra sus necesidades. Si quiere hablar con alguien directamente, contacte a la Línea de Ayuda de la Parkinson’s Foundation al 1-800-4PD-INFO (1-800-473-4636), opción 3 para español o escriba a Helpline@Parkinson.org.

¿Por qué lanzar una herramienta de chat impulsada por IA dedicada al Parkinson?

La Parkinson’s Foundation lanzó la herramienta de chat impulsada por la IA para brindar más apoyo a las personas en cualquier lugar y en cualquier momento. Cada etapa del Parkinson trae nuevas preguntas: una herramienta impulsada por la IA puede brindar respuestas inmediatas y confiables en el momento.

Al complementar nuestra Línea de Ayuda, PAM refleja el compromiso de la Fundación con hacer accesible la información. Obtener respuestas a las preguntas acerca del Parkinsons empodera a las personas con la EP y a sus aliados en el cuidado para defenderse para obtener una mejor atención y vivir mejor con Parkinson.

Queremos oír sus comentarios

PAM es una herramienta nueva, así que sus comentarios nos ayudan a mejorarlo. Si usa PAM, por favor, cuéntenos acerca de su experiencia aquí.

Diagnosing Parkinson's disease (PD) and dementia with Lewy bodies (DLB) remains a challenge. There is no single definitive test, and misdiagnosis can lead to ineffective treatments. That is why finding reliable biomarkers — measurable signs in the body that can indicate disease — is a major focus of PD research today. Biomarkers hold the promise of earlier, more accurate diagnosis, tracking disease progression and evaluating whether treatments are working.

PD and dementia with Lewy bodies are both Lewy body disorders. They both lead to the abnormal buildup of a misfolded protein called alpha-synuclein and the loss of dopamine. A protein called DDC plays a role in producing dopamine, so in Lewy body disorders such as PD, DDC levels change — making it a potentially useful signal (or biomarker) that the disease is present.

A new study published in Nature Medicine — featuring former Parkinson's Foundation awardee Giovanni Bellomo, PhD — highlights DDC as a promising new biomarker. Using cerebrospinal fluid collected through a spinal tap, the research team developed new tests to measure DDC levels and confirmed their accuracy across more than 1,100 people.

This study adds to a growing wave of biomarker discoveries that are transforming how we understand and diagnose PD. Last year, a study showed that a skin biopsy test could reliably detect phosphorylated alpha-synuclein (another potential biomarker) in people with PD and related disorders, which is now commercially available to help support diagnosis.

Together, these advances are moving us closer to an era where biological tests might offer earlier and more precise diagnosis.

Study Results

The researchers developed two new tests to measure DDC levels in cerebrospinal fluid and then confirmed their accuracy across more than 1,100 people. This included people with PD, dementia with Lewy bodies, Alzheimer’s disease and people without these conditions.

Overall, DDC levels in spinal fluid were significantly and consistently higher in people with PD and dementia with Lewy bodies — up to 2.5 times higher compared to people without these diseases and nearly twice as high as those with Alzheimer’s disease. The test accurately distinguished PD and dementia with Lewy bodies with 94% to 97% accuracy. It also differentiated these conditions from Alzheimer's disease.

Interestingly, people with Parkinson’s movement symptoms had higher DDC levels, but those levels didn’t increase as symptoms worsened. This suggests DDC may be most helpful for confirming a diagnosis rather than tracking disease progression.

In brain tissue examined after death, higher DDC levels measured during life matched up with greater buildup of alpha-synuclein — the hallmark protein involved in PD and DLB — reinforcing DDC’s connection to the underlying biology of these diseases.

Highlights

• A new test uses the protein called DDC as a biomarker to help identify PD with the hope that it could be a diagnostic tool one day.

• DDC levels in spinal fluid were significantly higher in people with PD and dementia with Lewy bodies —up to 2.5 times higher than in people without these diseases and nearly twice as high as in those with Alzheimer’s disease.

• Overall, the tests were accurate at distinguishing PD and dementia with Lewy bodies from people without these diseases and reliably differentiated these conditions from Alzheimer’s disease. These results suggest these tests could eventually be useful diagnostic tools for doctors. 

• People with symptoms (for example, movement problems in PD) had higher DDC levels. However, DDC levels didn't increase as symptoms got worse.

• In brain tissue examined after death, higher DDC levels measured during life matched up with greater buildup of alpha-synuclein.

What Does This Mean?

This research points to a potential new biomarker — a protein called DDC — that may help diagnose Parkinson’s and dementia with Lewy bodies (DLB) more accurately and earlier than current methods.

The DDC test showed high accuracy in distinguishing PD or DLB versus people without these conditions, as well as compared to people with Alzheimer’s disease. This accuracy is crucial for a neurological diagnostic test, especially for conditions where misdiagnosis is common due to overlapping symptoms and a lack of established biomarkers.

In the near future, this could help people be diagnosed with Parkinson’s and DLB more accurately and faster, which can dramatically improve treatment outcomes. However, in its current form, the results of this study suggest that the DDC biomarker may be best for confirming a diagnosis, but less helpful for tracking how the disease develops.

What Do These Findings Mean for People with Parkinson’s Right Now?

The DDC biomarker is not yet available as a clinical test. However, as we saw with the skin biopsy test (Syn-One), biomarker advances can quickly move from a research study to being used in-clinic. Additionally, considering that very few tests are 100% accurate, the concept of having multiple different biomarkers available to identify PD will help validate diagnoses and improve rigor in the field.

Studies like this one could help bring peace of mind to people with Parkinson’s and support diagnosis based on biological evidence, not only a doctor’s assessment.

For people with Parkinson’s, this study reinforces that the symptoms they experience reflect measurable brain changes in the brain. People who are concerned that they might have Parkinson’s disease or dementia with Lewy bodies should talk to their doctor.

Learn More

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

• Understanding Parkinson’s Biomarkers

• A Skin Test Could Detect Parkinson’s and Related Diseases

• Lewy What? Explaining Lewy Body Dementia

• Lewy Body Dementia Association

When you’re living with Parkinson’s disease (PD), the decisions made on Capitol Hill and in state capitals across the country can directly shape daily life. Whether it’s the funding that drives breakthrough research, the policies that determine whether you can access a specialist, or the environmental protections that could prevent PD in the first place, policy is personal.

Last month, that truth came to life in a powerful way. From March 15-18, more than 300 advocates from across the country gathered in Washington, D.C. for the 2026 Parkinson’s Policy Forum, an event that united people living with PD, care partners, clinicians, researchers and advocates to carry the message of the Parkinson’s community to Congress.

The Forum was an inspiring reminder of what we can accomplish when we speak with one voice. While the Forum has wrapped, the momentum it generated is just beginning. The policy priorities that advocates championed on Capitol Hill affect every person living with Parkinson's and there are still powerful ways to make your voice heard.

Here are five key Parkinson’s policy areas where your voice can make a real difference.

1. Implementation of the National Parkinson’s Project

The National Parkinson’s Project is a historic milestone: the first-ever federal initiative dedicated to Parkinson's disease. Congress passed a law to create the National Parkinson’s Project in 2024, but that is only the beginning. Implementation requires continued pressure and advocacy to ensure the initiative moves forward without delay.

The Parkinson's Foundation is working to protect this landmark project and build momentum as the government moves to put it into action. That means urging the Department of Health and Human Services to seat the National Parkinson’s Project Advisory Council so they can begin their vital work to help prevent, diagnose, treat and ultimately cure Parkinson’s and recommendations to improve quality of life for those living with PD. This project represents a generational opportunity, and advocates like you help keep it on track.

2. Increased Investment for PD Research

We are closer than ever to developing treatments that could slow or stop Parkinson's, not just manage its symptoms. But that progress depends on sustained investment. Federal support for PD research has not kept pace with the rapid growth of the disease, and funding uncertainty puts critical breakthroughs at risk.

The Parkinson's Foundation is advocating for increased investments, including $600 million a year in National Institutes of Health-funded Parkinson's research, as well as complementary investments at the state level that build on and expand what federal funding makes possible.

Every dollar invested in research brings us one step closer to a cure — and every advocate who makes the case to a lawmaker helps secure that funding.

3. Timely, Affordable and Quality Parkinson’s Care

Parkinson's is the fastest-growing neurodegenerative disease, with 90,000 new diagnoses every year. Yet access to quality care is increasingly out of reach for many people. Shortages of movement disorders specialists mean long travel distances. Coverage gaps and unpredictable costs create added stress. Quality of care varies widely depending on where you live.

The Parkinson’s Foundation supports policies that change this reality by making it easier to diagnose and treat PD, stabilizing and expanding telehealth coverage to reach people wherever they are, and ensuring robust public health programs that support both care and research. Quality Parkinson’s care should not be determined by your zip code.

Whether it’s expanding telehealth access or strengthening Medicare coverage, these policy changes have a direct impact on your ability to get the care needed to live well with PD.

4. Address Environmental Health Threats Linked to Parkinson’s

The causes of Parkinson’s are complex, but research has linked environmental risks — including certain chemicals like paraquat and trichloroethylene (TCE) — to an increased risk of developing PD. Even though paraquat has been banned in more than 70 countries, including China, this pesticide is still sold and used in the U.S.

The Parkinson’s Foundation is pushing the Environmental Protection Agency and state governments to end the use of paraquat in the U.S. This policy change could prevent countless future cases of PD, particularly in rural communities where pesticide exposure is most common.

Policy change can protect future generations from ever receiving a Parkinson's diagnosis. That is a powerful thing to advocate for.

5. Education: Access to PD Information

Knowledge is power, especially when it comes to early diagnosis and living well with Parkinson’s. Yet too many people with PD, their families, and even their healthcare providers lack access to timely, high-quality, tailored information about the disease.

The Parkinson’s Foundation is advancing policy changes that improve PD education for people with Parkinson’s, care partners and healthcare professionals. Better-informed healthcare professionals mean earlier diagnoses and better care. Better-informed patients and families mean more confident, empowered decision-making at every stage. Access to PD information also support prevention, helping communities recognize risk factors and take action before a diagnosis occurs.

People with Parkinson’s are at the center of everything we do, and ensuring they have the information they need is one of the most meaningful ways policy can improve lives right now.

Your Voice Can Change Everything

There is a direct connection between the actions we take today and the future we want to see. The research funding secured this year can become the new treatment option available in five years. The telehealth policy passed today means your neighbor in a rural county can see a specialist next month. The paraquat ban advocated for now could mean one fewer diagnosis in your community.

Ready to make a difference? Visit our Advocacy Center to join our Advocacy Network, contact your representatives, and take action on the issues that matter most to the PD community today.

The economic burden of Parkinson’s disease (PD) and atypical parkinsonism (AP) has grown faster than researchers previously estimated, reaching nearly $82.2 billion in 2024. Several Parkinson’s organizations, including the Parkinson’s Foundation, and industry partners backed and reported these findings in a new study.

This new study, The Economic Burden of Parkinson’s and Atypical Parkinsonism in the United States, builds upon similar research conducted previously on 2017 data, offering valuable updates and insights into how the economic burden has changed in the last seven years.

Read the press release

Key findings from the study include:

• There were an estimated 1.1 million people with PD living in the U.S. in 2024

• $23.8 billion is attributable to direct medical costs, including hospitalizations, outpatient care and medications.

• $58.4 billion reflects indirect and non-medical costs, including lost income, disability and unpaid caregiving.

"It is alarming to see the societal cost to treat PD continue to grow. This new study further underscores the extreme financial burden to not only society, but to the families of those living with PD.  Parkinson’s remains one of the most expensive diseases to care for yet the U.S. government invests less than 1% of this cost in searching for better treatments and cures through research. Disease-modifying breakthroughs are within reach, that’s why together with the Parkinson’s community, the Parkinson’s Foundation is urging for an increased investment of at least $600 million annually for Parkinson’s research at NIH," said James Beck, PhD, Chief Scientific Officer at the Parkinson's Foundation. 

Direct Medical Costs of PD Remain Steady

To calculate direct medical costs attributed to PD, the study authors compared average medical expenses by those with PD against a similar population (age, gender, ethnicity, insurance coverage) without PD. The difference between the two amounts was determined to be the excess medical cost due to PD.

In 2024, the average direct costs of PD were $18,859 per person across all age groups. These amounts are slightly lower than the average direct cost calculated in 2017, which was $24,439 per person at that time.

However, this difference is primarily due to increased medical expenses for the non-PD comparison group, possibly because of new and popular high-cost treatments such as GLP-1 agonists. Overall medical costs have increased 17% in the past 7 years, and the costs of PD may have only grown slightly slower than that.

Non-Medical and Indirect Costs Have Significantly Grown Since 2017

While direct medical costs of PD have remained relatively steady in the past seven years, estimates of non-medical and indirect costs have grown nearly twice as much in that time.

Non-medical costs related to PD, such as daily non-medical care and home or vehicle modifications, have more than doubled in the past decade, with the average person with PD paying $15,614 in non-medical expenses in 2024.

This dramatic increase is due in part to the study authors identifying new major contributors to economic burden, including housekeeping services, financial and legal planning services and accessible home purchase expenses. They also classified out-of-pocket expenses not covered by insurance such as counseling, supplies and therapeutic activities as costing people with PD on average $4,675 per person in 2024.

Indirect costs include the loss of wages or earnings due to the reduced ability to work attributable to PD (reduced hours, sick time spent, etc.). These costs increased 69% since 2017, going from $7,387 to $12,554 per person per year.

Taken altogether and including indirect cost burdens on care partners, the non-medical costs attributable to PD were $40,290 per person in 2024, up 58% from the 2017 amount of $25,558. This amount is greater than similar costs of other conditions such as diabetes, which had reported an indirect cost per person with diabetes of $4,500 in 2022.

The U.S. Population of People with PD and Their Care Partners is on the Rise

In 2017, the study authors estimated that the number of people with PD in the U.S. was 1.04 million. The 2018 Parkinson’s Foundation Parkinson’s Prevalence Project estimated that 1.2 million in the U.S. would be living with PD in 2030. This new study estimates the number of people with PD in the U.S. in 2024 to be 1.1 million, with the country very likely to reach the 2030 estimate years earlier than anticipated.

The study also found that:

• Nearly 40% of people with PD receive unpaid care from a care partner, and people with PD have an average of 2.3 care partners. This suggests that the number of PD care partners in the U.S. is nearly equal to the number of people living with PD.

• 20% of the care partners reported taking early retirement or reduced work hours due to their care provision.

• 34% of the care partners reported missing or cancelling their own routine health care visits for similar reasons.

Why is this study important?

In 2019, researchers projected that the economic burden of PD would not reach $79 billion until 2037. However, the U.S. has already hit that mark. Current projections assume incidence holds steady — if it continues to rise, the total economic burden will rise faster than currently projected.

Understanding and reevaluating the annual economic toll on people with PD, their care partners and the government strengthen the case for increased federal investment in Parkinson’s research and care. The Parkinson’s Foundation policy and advocacy priorities reflect these economic burden findings, as the Foundation is currently  working to:

• Increase federal research funding, including $600 million a year in National Institutes of Health-funded Parkinson's research.

• Promote prevention strategies, including efforts to reduce exposure to environmental risks tied to Parkinson’s including chemicals like paraquat and trichloroethylene (TCE).

• Implement the National Parkinson’s Project — a coordinated federal initiative to improve prevention, diagnosis, treatment and care.

Take Action. Visit our Advocacy Center to support Parkinson’s policy priorities

Knowing the economic burden of Parkinson’s also allows us to better serve people with PD and their families with programs to help them live better with the disease, touching on areas they are most concerned about and where we can have the most impact.

This study was sponsored by The Michael J. Fox Foundation for Parkinson’s Research (MJFF), with support from the Parkinson’s Foundation, industry groups (ACADIA and AbbVie), CurePSP and the American Parkinson Disease Association.

The Michael J. Fox Foundation, with support from the Parkinson’s Foundation and other community organizations and industry partners, used data from public databases including Medicare, the Centers for Disease Control and Prevention and the Census Bureau. Several Parkinson’s organizations, including the Parkinson’s Foundation, assisted with data collection through sharing a survey across websites, social media networks and email communications.

Learn More

• Explore ways to get involved in the Parkinson’s Foundation — from becoming a research advocate to joining a research study.

• Prevalence and Incidence of Parkinson’s

• Policy & Advocacy Priorities