Episode 137: CEO John Lehr Offers Broad Insight into the Parkinson's Foundation
Past podcasts have given glimpses into the broad range of programs and initiatives that the Parkinson’s Foundation has developed and supports. But to give a better understanding of the Foundation’s mission, its operation, reach, and funding, we spoke with John Lehr, its president and CEO. He discussed the reasons for the merger of the National Parkinson Foundation and the Parkinson’s Disease Foundation to form today’s Parkinson’s Foundation, what the new organization has accomplished, and its plans for the future.
Released: September 20, 2022
John L. Lehr leads the Parkinson's Foundation as president and chief executive officer. John guides the overall Foundation’s strategy of mission programs and resources that make life better for people with Parkinson’s. He works to expand the Foundation’s reach, research initiatives and presence, while working to improve health equity among the Parkinson’s community and the underserved. He ensures that all Foundation programs and resources aim to improve care and advance research toward a cure.
Adverse effects, often called side effects, are a common phenomenon that accompanies the use of many drugs, including ones used to treat the symptoms of Parkinson’s disease (PD). Any treatment is a balance between the desired effects of a drug and undesirable ones, so how to best ease symptoms while making the treatment tolerable. Specific to classes of drugs used for PD, some of the side effects may be drowsiness, insomnia, light headedness, hallucinations, cognitive impairment, swelling of the legs, dry mouth, weight gain, compulsive behavior, and others. These are just possibilities, and a good working relationship with a PD health care team can help avoid many of them. Beyond the PD team, keeping other health care providers informed is advisable since drug interactions can occur, so all practitioners (including dentists) should be aware of all medications that a person is taking, prescription, over-the-counter and even supplements.
In this podcast episode, neurologist Dr. Irene Richard of the University of Rochester Medical Center discusses several of the various drugs and drug classes used to treat the symptoms of PD in relation to the adverse effects that can accompany them. She offers insights into several ways to avoid or minimize adverse effects of drug therapy, what clinicians should tell people starting a new drug, and what people should ask as well as be aware of and report back.
Released: December 29, 2020
Dr. Irene H. Richard is Professor of Neurology with a secondary appointment in Psychiatry at the University of Rochester in Rochester, NY. After graduating from Cornell University in 1987 and receiving her MD from the Yale University School of Medicine in1991, Dr. Richard completed neurology residency at the University of Rochester in 1995, followed by NIH-funded fellowship training in Movement Disorders and Experimental Therapeutics in 1997. She joined the faculty of the University of Rochester in 1997. Dr. Richard provides neurological care for patients with Parkinson’s disease and related conditions and her clinical research program focuses on the psychiatric aspects of these illnesses. More recently, with support from a PF community grant, she has also been working with her team on efforts to optimize hospitalization for patients with PD. She is the author of numerous scientific articles, editorials and book chapters and has been the recipient of career development awards and research grants, including one from NIH to lead a multi-center clinical trial evaluating the treatment of depression in PD. Dr. Richard is Director of the University of Rochester’s Movement Disorders Fellowship Program, LBDA Research Center of Excellence, and Parkinson Foundation Center of Excellence.
Episode 134: Meet the Researcher: Disparities in PD Care
As with many medical conditions, people with Parkinson’s disease (PD) may experience disparities in access to care, in diagnosis, treatments, and ancillary care. These disparities may be based on age, gender, race, financial situation, language barriers, and geographic location, among other factors. Dr. Lynda Nwabuobi, now a movement disorders specialist at New York-Presbyterian/Weill Cornell Parkinson’s Disease and Movement Disorders Institute in New York City, received her specialized training at Columbia University, supported by a Parkinson’s Foundation Movement Disorders Fellowship.
During her training, she noticed that women with PD who were home bound were more likely than men to be alone and to have less access to a neurologist. She also recognized disparities in the care between the majority white population of people with PD seen at the main hospital clinic of New York University (NYU) compared to the more racially diverse, multicultural community of people seen at NYU’s public Bellevue Hospital nearby – even though they were being treated by the same doctor. In this podcast episode, she describes how she acted on her passion of “creating access to better care to marginalized communities and bring more diversity to the clinic.” Rather than waiting for the community to come to the health care setting, she reached out to them on their turf — at a farmers’ market.
Released: August 9, 2022
Dr. Lynda Nwabuobi is an Assistant Professor of Clinical Neurology at New York Presbyterian/Weill Cornell Medical College, specializing in Parkinson’s Disease and Movement Disorders. She diagnoses and treats individuals with Parkinson’s disease, tremors, and other neurological diseases with the goal of delivering compassionate and individualized care using a holistic and multidisciplinary approach. In addition to her clinical work, Dr. Nwabuobi has interests in health disparities research, teaching, advocacy, and community engagement/outreach. She has published several articles in peer-reviewed journals and has presented her work at national and international conferences. She is actively involved in educating underserved communities about Parkinson’s disease with the goal of improving access to care.
The Kensington: Leading the Way in Compassionate Parkinson’s Care
🧠 What will you learn in this article?
This article highlights a Parkinson’s Foundation Community Partner in Parkinson’s Care, The Kensington, and how it provides person‑centered Parkinson’s care. It discusses:
How the team receives extensive PD education and experiential learning to better support residents with Parkinson’s disease and movement disorders.
The importance of medication timing in resident living.
PD-tailored programs like vocal gym and support group that foster independence and community.
Questions family members and people with Parkinson’s can ask potential living communities.
At The Kensington in White Plains, NY, compassionate care for people living with Parkinson’s disease (PD) isn’t just a promise, it is a practice grounded in training and personalization.
Through expert-led training and measurable outcomes, the Parkinson’s Foundation Community Partners in Parkinson’s Care educates and prepares care staff working in senior living communities and home care agencies to provide optimal support for people living with Parkinson’s disease (PD). The program focuses on practical, day-to-day strategies on how Parkinson’s affects movement and mood — and how PD care can improve quality of life.
The Kensington Associate Executive Director Joanne Hubbard
As a community partner, The Kensington ensures residents with Parkinson’s receive individualized, person-centered support. In this article, The Kensington Associate Executive Director Joanne Hubbard shares how her team puts these practices into action every day.
How prevalent is Parkinson’s disease at The Kensington?
Joanne: It fluctuates but about 15 to 30% of our total resident population are living with Parkinson's. In New York, there's a special license for assisted living communities called an enhanced license that allows our residents to age in place. The Kensington has that license, which enables people to remain in our community while receiving higher acuity care as their condition progresses.
Our promise is to love and care for our residents like we would our own family. Parkinson’s care is more than managing symptoms, we aim to preserve dignity, purpose, voice and quality of life at every stage.
Why did you become a Community Partner?
Joanne: Community Partners in Parkinson’s Care training equips our team to do more than share information — it builds a shared understanding that allows residents, families and team members to navigate Parkinson’s together. Our team and most residents recognize how Parkinson’s can affect daily activities and symptoms related to Parkinson's. Because of our commitment to excellence in Parkinson’s care, and our partnership with Community Partners in Parkinson’s Care, we support more people with Parkinson’s. The Community Partners provides our team, residents and families with information they need to succeed now.
What are some examples of how staff provides specialized Parkinson’s care?
Joanne: Our THRIVE with Parkinson’s program for residents with Parkinson’s and other movement disorders and their family members stands for: Therapeutic, Holistic, Revitalizing, Inspiring Independence, Vocally Vibrant and Empowering. When it comes to Parkinson’s, our team staff is trained to be intentional with time. They know to slow down, allow medication time to take effect, and adjust communication so instructions are clear and manageable. They know to give residents extra time for a response if they're having an off episode.
Explore Parkinson's Foundation resources about advanced Parkinson's.
When you see these strategies making a difference, it reinforces that Parkinson’s training truly works. Anyone coming into this work is doing it because you love people and you want to help. These strategies enable you to actualize that goal.
How do you train staff to provide better Parkinson’s care?
Joanne: We use the Community Partners Portal, which staff can complete at their own pace, but I'm an advocate of the classroom approach so we watch the courses together. When a new team member starts, they participate in a full day of Parkinson's training. I also advocate for experiential learning — if you're not doing it yourself, you are less likely to apply it. I want people to feel scenarios in their bodies. We practice in real time and discuss scenarios. We also have some of our residents with Parkinson’s join the training for a Q&A, which is highly impactful.
As a Community Partner we are given educational resources for our team like the Experiential Toolkit. The kit includes heavyweight shoes with Velcro that especially resonate with staff because they get stuck to the carpet. So, when they get up from a chair wearing these shoes, they can’t take that first step. They can really imagine what a freezing of gait episode feels like. And they can apply that feeling to helping a resident who freezes when going through a threshold or walking into the elevator.
Our team also customizes routines for residents with Parkinson’s. We promote independence. For example, we schedule time to help Ben complete his night routine while seated, or if he wants to stand, we will stand behind him. Our goal is to not do things for residents they can do for themselves.
The Kensington is known for its ability to deliver Parkinson’s medication on time. How and why is this a goal for your center?
Joanne: Providing Parkinson’s medication on time is a major key of the Community Partner program. It was the main area that made me start digging into what do we need to do differently to improve our Parkinson’s care.
After joining the Parkinson’s Foundation Community Partners program, we created an additional nursing position to administer Parkinson's medication. Many of our residents with Parkinson’s require up to eight medication passes a day. That level of frequency made it an impossible task for one nurse to get to all residents on time.
Today, our residents with Parkinson's get their PD medications within a 15-minute window. We recognize that many care centers do not have the same level of resources available. That is one of the reasons I am so proud to work at The Kensington, our leadership understands it's always about the people. Our promise is to love and care for our residents as if they're our own family. And when there is a need, we look at how we can solve it.
What’s your favorite Kensington program?
Joanne: We offer programs that serve the body, mind, spirit. Our music therapy program is led by a therapist with a background in neurologic music therapy. He encompasses a lot of neurology-based approaches — a mix of coordination, range of motion and movement. He also does a lot of breathing, meditation and relaxation exercises. Our residents experience a lot of stiffness and anxiety, so it’s a win if we can give them tools they can then use in their own time.
I also run our vocal gym that focuses on our vocal structure, monotone speech, issues with breath support and voice control. I educate attendees about dopamine and how we need it to have coordination and movement. I talk a lot about Parkinson’s in the vocal gym and what's happening in the brain and the body. This helps the residents understand what is happening and gives them a sense of control.
One way Kensington is unique is that it educates residents about Parkinson’s too. Why?
Joanne: We keep our Parkinson's programming open for everybody. Our residents were noticing when their friends’ symptoms were interfering with something they were doing and would bring it up to staff, saying “hey, I'm noticing Joanne's having a harder time at breakfast with her utensils.” We provide a context and understand about Parkinson’s in how maybe Joanne’s experiencing an “off” time to help them understand what is happening rather than feel concerned or confused.
How does Kensington offer emotional support for residents?
Joanne: We offer Parkinson’s and movement disorders support groups for residents and a separate one for care givers and family members. They help residents better understand their own experiences and relate to others. We meet monthly and they run the group; I just facilitate it — it's an amazing group. They find support in one another.
What has surprised you about Parkinson’s disease?
Joanne: My support group told me I can share this, but I was surprised to learn how isolated people in the group felt because of Parkinson’s. They felt misunderstood and judged, some were told they were making their Parkinson’s up. For them to be able to come to this group and be able to talk has given them a community within the community.
Just last month I brought up delusions to the group, a topic we don't hear a lot from the residents about. Like an onion, the group unfolded. Some people were very aware they had experienced delusions, while others were realizing it during the group. It was a powerful session to say the least.
Can you share a resident story that inspired you?
Joanne: We have a resident that was unable to walk unassisted. Right away he expressed his goal, which was to walk his daughter down the aisle for her upcoming wedding. It was helpful for staff to know his goal. With hard work, steady Parkinson’s care and therapy, he walked her down the aisle. He danced with her at her wedding, and he even gave a speech. The impression we got is that these things weren’t even on his radar when he joined us. We were all so moved.
Do you have any advice for family members of people with Parkinson’s considering community living?
Joanne: When looking at potential senior living communities, always ask questions. I would start with these topics and avoid feeding staff answers:
Ask all the PD medication questions: How are medications managed? Who manages them? Can the person manage their own medications or does a nurse or a medication aide administer it? What is the window of time that they'll get medications?
What kind of specialized programs do you have for people with Parkinson's?
What support opportunities do you have for residents? And for the families?
Ask about their training in Parkinson’s care. Look for the Parkinson's Foundation Community Partners badge, which shows they’ve completed additional Parkinson’s training.
The Parkinson’s Foundation is grateful to Acadia Pharmaceuticals and the Edmond J. Safra Foundation for their support of Community Partners in Parkinson’s Care.
Episodio 36: Manejo de los periodos en “off” en el Parkinson
Cuando los síntomas del Parkinson están bajo control durante el día, esto se conoce como estar en "on". Cuando los efectos de los medicamentos empiezan a desaparecer y los síntomas reaparecen o empeoran, se consideran periodos en "off". Estas fluctuaciones de los síntomas pueden variar de una persona a otra; algunas personas pueden notar más síntomas motores durante los períodos en "off”, mientras que otras pueden verse más afectadas por síntomas no motores.
Los periodos en "off" pueden complicar las tareas diarias, sobre todo si suceden con mayor frecuencia a lo largo del día. En este episodio, hablamos con el Dr. Enrique Urrea Mendoza, neurólogo y especialista en trastornos del movimiento en Tallahassee Memorial Healthcare, para entender mejor por qué se producen los periodos en "off". Habla de los desencadenantes habituales que pueden contribuir a los periodos en "off" y comparte estrategias para manejar mejor estas fluctuaciones.
Publicado: 20 de enero de 2026
Enrique Urrea Mendoza, MD es neurologo con especializacion en movimientos anormales, tales como enfermedad de Parkinson y otros tipos de temblores. Actualmente es el director de la Clinica de Movimientos Anormales en Tallahassee Memorial Healthcare en Florida USA, y professor del Departamento de Ciencias Clinicas de la Universidad Estatal de la Florida (FSU). Es el director ademas de la clinica para Parkinsonismos atipicos, coordinador del Grupo de apoyo para la Enfermedad de Parkinson en Tallahassee, y es investigador clinico en enfermedades como Parkinson, parkinsonismos atipicos y enfermedad de Huntington.
Dr. Urrea es medico de la Universidad del Rosario, neurologo clinico de la Fundacion Universitaria de Ciencias de la Salud, quien posteriormente realizo un entrenamiento mas profundo en trastornos del movimiento, completando un fellowship y realizando neurologia clinica e investigacion, en la Universidad de Cincinnati, USA.
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Exploring Complementary Therapies and Functional Medicine in Parkinson’s Care
Integrative medicine combines evidence-based medicine with proven complementary therapies and functional medicine, treatment that seeks to treat the whole person, to manage Parkinson’s disease (PD) symptoms. Explore how non-drug treatments — such as massage, acupuncture, red light therapy and CBD — are sometimes used to support well-being alongside traditional Parkinson’s care.
The following article is based on a Parkinson’s Foundation Expert Briefing exploring complementary therapies and holistic medicine in Parkinson's care, hosted by Britt Stone, MD, assistant clinical professor, Movement Disorders division, Department of Neurology at Vanderbilt University Medical Center (VUMC), a Parkinson's Foundation Center of Excellence, and clinical operations director for VUMC’s main campus neurology clinics.
Bridging Modern Medicine and Complementary Care
Traditional Western-medicine therapies include care your neurologist might prescribe, whether levodopa or other prescription medications, physical or occupational therapy or psychiatry referrals or a home health aide recommendation.
Integrative medicine blends medicine with proven complementary therapies to encourage optimal well-being.
Functional medicine falls under the umbrella of integrative medicine; it seeks to identify the root cause of illness and treat the entire person through a personalized care plan.
Complementary therapies are a component of functional medicine — these can include mindfulness, art or dance therapy or other treatments.
Taking a Deeper Look at Functional Medicine
Living well with Parkinson’s requires ongoing management — the right medications, dedicated exercise, a balanced diet and the ability to adapt to changing needs. Functional medicine also takes whole-body approach to care, with an emphasis on sustained nutrition, gut health and lifestyle factors.
At its core, functional medicine incorporates habits, routines and rhythms into daily living that contribute to overall health. From there, specific therapies to target individual needs are integrated into a care plan. These might include tailored exercise, supplements or herbal remedies or other complementary therapies.
Functional medicine can also include laboratory or diagnostic testing to uncover whether factors such as genetics or environmental exposures, including allergens, are impacting body function. Lab testing, which is not always covered by insurance, could include screening for environmental mold or other toxins in the body or assessments of:
Vitamin and mineral levels
Gut health
Inflammatory markers
Food sensitivities
To some extent, genetics, environment, previous illnesses, social and behavioral factors influence the health outcomes of every person. Functional medicine considers all these aspects and aims to slow disease progression and optimize quality of life.
Complementary Therapies
Parkinson’s can cause various non-movement symptoms — including stiffness, pain, anxiety, sleep and mood changes — and medications might not relieve them all. Non-drug complementary therapies have been moving into mainstream use for Parkinson’s symptom management, particularly for symptoms that don’t respond as well to prescription medications.
Certain complementary therapies that foster social connections and creativity while promoting purpose and play have been shown to improve quality of life. A 2020 meta-analysis showed that dance improved movement and non-movement symptoms and quality of life in people with Parkinson’s. A 2013 six-week clay art therapy program for Parkinson’s showed a decrease in depression, stress and obsessive-compulsive thinking among participants.
Some complementary therapies are rooted in Chinese philosophy and medicine and the concept of chi, or qi — the energy or life force that animates a person. Sluggish or deficient chi is thought to cause illness. Mind-body breathwork, such as Tai Chi and qigong, used to improve balance, function and mood in Parkinson’s, aims to improve energy flow.
Other therapies include:
Acupuncture: One study showed acupuncture, which also aims to balance energy flow, could possibly relieve musculoskeletal pain in Parkinson’s. Other case reports and clinical studies show that acupuncture may improve activities of daily living for people with Parkinson’s. Dry needling, a physical therapy technique used to ease pain, speed healing and improve movement, also uses small thin needles, but the technique is different and the goal is targeted muscle treatment, rather than improved energy flow.
Massage: It is used to boost relaxation and ease muscle spasms and cramps. A 2020 review looking at 12 studies of massage therapy and its benefits in Parkinson's found that:
Multiple types of massage induced relaxation.
Participants reported improvements in mood, fatigue, sleep and pain.
Some research shows neuromuscular types of massage, including shiatsu, tuina and Thai neuromuscular massage, might improve motor symptoms.
A 2020 review of 12 massage therapy studies and its benefit on Parkinson's symptoms, found that:
Multiple types of massage induced relaxation
Participants reported improvements in mood, fatigue, sleep and pain.
Some research shows neuromuscular types of massage, including shiatsu, tuina and Thai neuromuscular massage, might improve movement symptoms.
Red-light therapy: Emerging research shows low-level red-light therapy, also called photobiomodulation, may hold neuroprotective potential for Parkinson’s. However, more studies are needed. The potential health benefits of red-light therapy were discovered by NASA scientists who, when experimenting with light-emitting diodes to boost plant growth, noticed the lights also sped up wound healing.
Red-light therapy is currently used as part of photodynamic therapy in dermatology to treat certain types of skin cancer (the red light activates a photosensitizing drug). It is also used to treat psoriasis and acne. Red-light therapy is thought to work by stimulating the mitochondria in the cells being treated, leading to more efficient cellular activity and new cell growth. It is important to protect the eyes when using any sort of red-light therapy.
Cannabidiol (CBD): This compound is found in hemp and marijuana cannabis plants and interacts with the body's endocannabinoid system. CB1 and CB2 receptors, key components of this system, are involved in communication between brain cells and gut and immune system health.
There are higher concentrations in marijuana of THC, the compound that gets people high. Hemp is typically rich in CBD, a compound that may be helpful for sleep, anxiety or pain, though more research is needed. Epidiolex is a prescription form of CBD, approved by the Food and Drug Administration to treat certain types of seizures.
Medical and recreational marijuana legalization varies by state. There can be safety considerations, depending on your symptoms or medications you may be taking.
Working Complementary Therapy into Your Routine
Creating a personalized, balanced plan to manage Parkinson’s can help you maintain independence. Complementary therapies, therapeutic touch, a practitioner who listens to you, downtime and mindfulness can all benefit quality of life and improve sense of wellness.
When deciding what therapies might benefit you, think about your goals and what symptoms bother you the most. Have an open conversation with your healthcare team and discuss what treatment options are available. Talking about potential therapies with your doctor can help you avoid potential interactions and ensure the best outcomes. Connecting online or in person with people in the Parkinson’s community can also give you an opportunity to talk about what has worked for others and share your own experiences.
Consider therapies that align with your needs that are also accessible, affordable and manageable. Add in one new thing, observe the effects or benefits and adjust or change plans, with input from your healthcare team, as needed.
Learn More
Explore our resources about complementary therapies and symptom management in Parkinson’s:
Explorando las terapias complementarias y la medicina funcional en el cuidado del Parkinson
La medicina integrativa combina la medicina basada en la evidencia con terapias complementarias de eficacia comprobada y la medicina funcional; tratamiento que pretende atender a la persona en su totalidad, para controlar los síntomas de la enfermedad de Parkinson (EP). Explore cómo los tratamientos no farmacológicos, como los masajes, la acupuntura, la terapia con luz roja y el CBD, se utilizan a veces para favorecer el bienestar junto con los cuidados tradicionales del Parkinson.
El siguiente artículo se basa en una de las Charlas con Expertos - Expert Briefings de la Parkinson's Foundation, que explora las terapias complementarias y la medicina holística en el cuidado del Parkinson, presentada por la Dra. Britt Stone, profesora clínica adjunta, división de Trastornos del Movimiento, Departamento de Neurología en el Vanderbilt University Medical Center (VUMC, por sus siglas en inglés), un Centro de Excelencia de la Parkinson's Foundation y directora de operaciones clínicas para las clínicas de neurología del campus principal de VUMC.
Un puente entre la medicina moderna y los cuidados complementarios
Las terapias tradicionales de medicina occidental incluyen los cuidados que pueda recetar su neurólogo, ya sea levodopa u otros medicamentos recetados, fisioterapia o terapia ocupacional o psiquiatría o la recomendación de un asistente de salud a domicilio.
La medicina integrativa combina la medicina con terapias complementarias de eficacia probada para fomentar un bienestar óptimo.
La medicina funcional se engloba dentro de la medicina integrativa; busca identificar la causa raíz de la enfermedad y tratar a la persona en su totalidad mediante un plan de atención personalizado.
Las terapias complementarias son un elemento de la medicina funcional: pueden incluir atención plena (mindfulness), terapia artística o de danza u otros tratamientos.
Una mirada más profunda a la medicina funcional
Vivir bien con Parkinson requiere un manejo continuo: los medicamentos adecuados, ejercicio estructurado, una dieta equilibrada y la capacidad de adaptarse a las necesidades cambiantes. La medicina funcional también adopta un enfoque integral de la atención, haciendo hincapié en factores constantes de nutrición, salud intestinal y estilo de vida.
En esencia, la medicina funcional incorpora a la vida diaria hábitos, rutinas y ritmos que contribuyen a la salud general. A partir de ahí, las terapias específicas para atender las necesidades individuales se integran en un plan de cuidados. Éstos pueden incluir ejercicios adaptados, suplementos, hierbas medicinales u otras terapias complementarias.
La medicina funcional también puede incluir pruebas de laboratorio o diagnósticas para descubrir si factores como la genética o la exposición ambiental, incluidos los alérgenos, influyen en el funcionamiento del organismo. Las pruebas de laboratorio, que no siempre cubre el seguro, podrían incluir la detección de moho ambiental u otras toxinas en el organismo o evaluaciones de:
Niveles de vitaminas y minerales
Salud intestinal
Marcadores inflamatorios
Sensibilidad alimentaria
Hasta cierto punto, la genética, el medio ambiente, las enfermedades previas y los factores sociales y de conducta influyen en los resultados de la salud de cada persona. La medicina funcional toma en cuenta todos estos aspectos y busca ralentizar la progresión de la enfermedad y optimizar la calidad de vida.
Terapias complementarias
El Parkinson puede causar diversos síntomas no motores, como rigidez, dolor, ansiedad, sueño y cambios de humor, y es posible que los medicamentos no los alivien todos. Las terapias complementarias no farmacológicas se han ido generalizando para el tratamiento de los síntomas del Parkinson, sobre todo para aquellos que no responden tan bien a los medicamentos recetados.
Ciertas terapias complementarias que fomentan las conexiones sociales y la creatividad al tiempo que promueven el propósito y el juego han demostrado mejorar la calidad de vida. Un metaanálisis de 2020 demostró que el baile mejoraba los síntomas motores y no motores y la calidad de vida en personas con Parkinson. Un programa de seis semanas de arteterapia con barro para Parkinson mostró una disminución de la depresión, el estrés y el pensamiento obsesivo-compulsivo entre los participantes.
Algunas terapias complementarias están basadas en la filosofía y la medicina chinas y en el concepto de chi o qi, la energía o fuerza vital que anima a una persona. Se cree que un chi lento o deficiente provoca enfermedades. El trabajo de respiración mente-cuerpo, como el Tai Chi y el qigong, utilizados para mejorar el equilibrio, el funcionamiento y el estado de ánimo en el Parkinson, busca mejorar el flujo de energía.
Hay otras terapias como:
Acupuntura: Un estudio demostró que la acupuntura, que también busca equilibrar el flujo de energía, podría aliviar el dolor musculoesquelético en el Parkinson. Otros informes de casos y estudios clínicos muestran que la acupuntura puede mejorar las actividades de la vida diaria de las personas con Parkinson. La punción seca, una técnica de fisioterapia utilizada para aliviar el dolor, acelerar la curación y mejorar el movimiento, también utiliza pequeñas agujas finas, pero la técnica es diferente y el objetivo es el tratamiento del músculo específico, en lugar de mejorar el flujo de energía.
Masaje: Se utiliza para aumentar la relajación y aliviar los espasmos y calambres musculares. Una revisión de 2020 que analizaba 12 estudios acerca de la terapia de masaje y sus beneficios en el Parkinson descubrió que:
Múltiples tipos de masaje inducían relajación.
Los participantes reportaron mejoras en el estado de ánimo, la fatiga, el sueño y el dolor.
Algunas investigaciones demuestran que los tipos de masaje neuromuscular, como el shiatsu, el tui na y el masaje neuromuscular tailandés, podrían mejorar los síntomas motores.
Terapia de luz roja: Las nuevas investigaciones muestran que la terapia con luz roja de bajo nivel, también llamada fotobiomodulación, puede tener un potencial neuroprotector en el Parkinson. Sin embargo, se necesitan más estudios. Los beneficios potenciales para la salud de la terapia con luz roja fueron descubiertos por científicos de la NASA que, al experimentar con diodos emisores de luz para estimular el crecimiento de las plantas, observaron que las luces también aceleraban la cicatrización de las heridas.
La terapia con luz roja se utiliza actualmente como parte de la terapia fotodinámica en dermatología para tratar ciertos tipos de cáncer de piel (la luz roja activa un fármaco fotosensibilizante). También se utiliza para tratar la psoriasis y el acné. Se cree que la terapia con luz roja actúa estimulando las mitocondrias de las células tratadas, lo que conduce a una actividad celular más eficaz y al crecimiento de nuevas células. Es importante proteger los ojos cuando se utiliza cualquier tipo de terapia con luz roja.
Cannabidiol (CBD): Este compuesto se encuentra en las plantas de cannabis como cáñamo y marihuana e interactúa con el sistema endocannabinoide del organismo. Los receptores CB1 y CB2, componentes clave de este sistema, intervienen en la comunicación entre las células cerebrales y la salud intestinal e inmunitaria.
En la marihuana, hay mayores concentraciones de THC, el compuesto que produce un efecto psicoactivo. El cáñamo suele ser rico en CBD, un compuesto que puede ser útil para el sueño, la ansiedad o el dolor, aunque se necesita más investigación. Epidiolex es una forma recetada de CBD, aprobada por la Food and Drug Administration (Administración de Alimentos y Medicamentos) para tratar ciertos tipos de convulsiones.
La legalización de la marihuana medicinal y recreativa varía según el estado. Puede haber consideraciones de seguridad, dependiendo de sus síntomas o de los medicamentos que esté tomando.
Incorporación de la terapia complementaria a su rutina
La creación de un plan personalizado y equilibrado para manejar el Parkinson puede ayudarle a mantener su independencia. Las terapias complementarias, el contacto terapéutico, un profesional que escuche, el tiempo de descanso y la atención plena pueden mejorar la calidad de vida y la sensación de bienestar.
A la hora de decidir qué terapias podrían beneficiarle, piense en sus objetivos y en los síntomas que más le molestan. Mantenga una conversación abierta con su equipo de atención médica y analice las opciones de tratamiento disponibles. Hablar acerca de las posibles terapias con su doctor puede ayudarle a evitar posibles interacciones y garantizar los mejores resultados. Conectarse en línea o en persona con personas de la comunidad de Parkinson también puede darle la oportunidad de hablar acerca de lo que ha funcionado para otros y compartir sus propias experiencias.
Considere terapias que se ajusten a sus necesidades y que además sean accesibles, asequibles y manejables. Añada un elemento nuevo, observe los efectos o beneficios y ajuste o cambie los planes, con la opinión de su equipo de atención médica, según sea necesario.
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Explore nuestros recursos acerca de las terapias complementarias y el manejo de los síntomas en el Parkinson:
I first met my husband, Mark, in 2010, married in 2013, and on August 26, 2025, he passed away unexpectedly due to balance issues caused by his Parkinson’s disease (PD). In November 2010, we noticed a tremor in his hand while watching a performance of Jersey Boys on Broadway in New York.
Following this, Mark consulted his doctor and was initially diagnosed with benign essential tremors. He then researched further and sought the expertise of a leading neurologist in New England, receiving the shocking diagnosis of Parkinson’s disease. Until that point, throughout his 50 years he had enjoyed excellent health.
Three years later, we married in Kennebunkport, ME, at a venue called Hidden Pond, despite his PD. We believed we were prepared for the challenges of Parkinson’s, but true readiness is elusive until faced with adversity. Initially, we enjoyed life, traveling and spending quality time with family and friends. We planned for retirement by purchasing land in Kennebunkport and spending time at our condo in Naples, FL. Little did we know that the backyard of our wedding reception venue would become our dream retirement home. Life has a way of cracking back.
Mark, my best friend and love of my life, was known for his wit, sense of fun and gentlemanly demeanor. He was incredibly kind and had a playful spirit. Let me share how he embodied all these qualities.
Our love story inspired our wedding theme: the “Love Fest.” Our wedding reflected Mark’s elegance; he made me laugh daily with his humorous remarks and the sparkle in his eyes. He was lively and spirited, often dancing and singing karaoke in our living room. Even during car rides, he could shift from being upset one moment to bursting into song the next. He embraced my enthusiasm for New Year’s Eve, donning a festive hat, garland and noisemakers.
Mark was adventurous, though not in the traditional sense; he was spontaneous and would suggest late-night bowling on New Year’s Eve. During this time, we lived life to the fullest and Parkinson’s was a distant cousin. We were aware, took progressive measures, but did not let “it” control our daily lives.
Over the years, we did our best to navigate Mark’s condition, including undergoing deep brain stimulation (DBS) surgery. This past summer, he was thrilled to have his device replaced with a new Abbott chargeable model with the help of Christipher Hennessey, Dr. Cosgrove and his Brigham and Women’s team. Despite the daily struggles with Parkinson’s, Mark remained resilient and rarely complained, and we cherished our love and life together. I was preparing for retirement, and we aimed to build a future that would allow us to enjoy a few more years before facing the advanced stages of Parkinson’s.
However, in the last two years, Mark encountered numerous challenges as his condition progressed. This summer, he grappled with balance issues, festination (or shuffling) and freezing episodes. We witnessed a decline, and I found myself unprepared for the emotional toll of being his caregiver.
One late Sunday afternoon, after returning home from a weekend in Kennebunkport, mile walks on the beach, seafood, family, card games and laughter, we were about to enjoy some takeout Chinese food. I called him outside to admire the tomatoes that had ripened over the weekend.
Moments later, I discovered him unresponsive on the ground. He had suffered a fracture of his top vertebra and passed away instantly. This was not the way it was supposed to end! But I’m sure in his mind it was; no pain, no stage four, and no burden on others. This was Mark. In my mind, I’m rejecting the loss of my husband and wanted to squeeze out a few more years.
The date of his death certificate reads August 26, 2025; however, I believe the true date of his passing was August 24, 2025, as that was when all life departed from his body. A silver lining in this tragedy is that Mark, with his generous spirit, chose to be an organ donor. He gave two kidneys and one liver, which is why he remained on life support for two additional days.
Parkinson’s disease is a debilitating condition that robbed my best friend, Mark, of his spark but also affected me, our family members, and all who loved him. I miss him severely, and my life will never be the same. While I am saddened that we were so close to having the future we planned together, I also recognize that I was fortunate to share 15 wonderful years with Mark, years that many people may never experience in a lifetime.
To honor Mark and the time we had together, I decided to raise Parkinson’s awareness and funds to end Parkinson’s and become a Parkinson’s Champion. I ran in the 2025 Manchester Half Marathon in Mark’s memory. I have run for 40 years but never has a run meant so much to me. This is not the end but a beginning in my fight against this ugly disease.
As an educator by trade, I will advocate and be a voice for people living with Parkinson’s and care partners.
Parkinson’s Champions athletes raise funds and awareness for the Parkinson’s Foundation while competing in some of the world’s most popular endurance events. Become a Parkinson’s Champion today and explore our upcoming endurance events.
Rethinking Lewy Bodies and Cellular Traffic in Parkinson’s Disease
In Parkinson’s disease (PD), it is believed that dopamine neurons break down in part due to internal buildup of disruptive clumps called Lewy bodies. These Lewy bodies contain many lipids, which make up membranes of cellular components, and proteins including a misfolded form of a protein called alpha-synuclein. While much research has focused on what damage Lewy bodies cause to cells after they are formed, we still do not fully understand what causes them to form in the first place.
Wilma van de Berg, PhD, recipient of a Parkinson’s Foundation Trailblazer Award, is piecing together what conditions lead to Lewy body formation in neurons. By better understanding how Lewy bodies form, researchers can design treatments and therapies that could prevent them from forming and fight PD progression.
“Our conceptually highly innovative research can potentially transform Lewy body research and contribute to the development of complementary strategies for currently lacking disease-modifying therapies in PD.” – Dr. van de Berg
Alpha-synuclein is involved in regulating the shuttling of signaling molecules like dopamine into and out of neurons. It does so by attaching to lipid membranes of vesicles, little enclosed packages optimized for transport.
Dr. van de Berg believes that PD causes a disruption in alpha-synuclein’s shuttling role at these membranes in cells, leading to traffic jams of vesicles and other proteins that then become Lewy bodies. She also theorizes that alpha-synuclein may misfold within developing Lewy bodies, rather than misfolded alpha-synuclein causing Lewy bodies, a novel perspective.
To test this hypothesis, Dr. van de Berg, senior postdoc Dr. Tim Moors (Co-PI) and their team at the VU University Medical Center in Amsterdam, Netherlands, will first analyze postmortem brain tissue samples from people who did and did not have PD. They expect to see lower levels of critical shuttling regulation proteins in PD-affected neurons compared to non-PD neurons.
Next, Dr. van de Berg’s team will use neuron-like cells in petri dishes to see if deactivating cell shuttling signals (forcing a cellular traffic jam) leads to Lewy body formation. This could further confirm her hypothesis, especially if it leads to natural alpha-synuclein misfolding as well.
Dr. van de Berg’s team will also test a treatment involving PARP-1 inhibitors, intended to “loosen up” this traffic jam, to see if it can improve the health of those petri dish neurons with Lewy bodies. These experiments could set the foundation for future PD treatment development centered on this new understanding of Lewy body formation.
“The development of alternative and complementary hypotheses for Lewy body formation, their exploration in model systems, and their translation to patient-relevant materials are urgently needed,” said Dr. van de Berg. “I am really excited that I will be able to test our hypothesis and hope to contribute to novel therapeutics in the PD field.”
2024 Melvin Yahr Parkinson’s Disease Clinical Research Award
How Lying Down Could Counter the Risks of Standing Up in Parkinson’s
People with Parkinson’s disease (PD) often experience disruptions related to the autonomic nervous system, which regulates all the “automatic” bodily functions. One of these affected functions is blood pressure, which can cause those with PD to develop a condition called neurogenic orthostatic hypotension (nOH). This condition creates bouts of low blood pressure after standing, which can lead to dizziness or fainting.
Heba Deraz, MD, PhD, recipient of the 2024 Melvin Yahr Parkinson’s Disease Clinical Research Award, jointly awarded by the Parkinson’s Foundation and the International Association of Parkinsonism and Related Disorders (IAPRD), believes that a potential solution to nOH could be prescribed periods of lying down.
“This research aims to improve the understanding of orthostatic hypotension in Parkinson’s disease, a common but underrecognized source of disability. By identifying clinical patterns, it could lead to earlier detection and more targeted interventions.” – Dr. Deraz
In contrast to nOH, supine hypertension (SH) is when blood pressure increases when lying down. Dr. Deraz theorizes that regularly lying down, increasing blood pressure, will counterbalance the low blood pressure episodes of nOH when standing up. The difficulty is that sustained SH can also be a health hazard, so finding the right ratio of lying down to standing to maximize safety and relief is key.
Working in the lab of Dr. Alberto Espay at the University of Cincinnati, Dr. Deraz will enlist the help of 60 people living with PD to test her hypothesis. Each will be equipped with 24-hour blood pressure monitoring devices which will capture bouts of decreased blood pressure from standing, as well as increased blood pressure from lying down. This data will be collected over several weeks, during which Dr. Deraz and her team will assess each person’s quality of life and nOH severity through routine questionnaires.
At the end of the experiment, Dr. Deraz expects to see that those with a greater number of SH episodes relative to nOH episodes have increased quality of life and reduced blood pressure problems when standing. These results could inform practical medical guidance for those with PD and nOH, offering relief from this hazardous condition by simply optimizing time spent lying down.
As a neurologist who works with many people with PD in her medical practice at Cairo University Hospitals in Egypt, Dr. Deraz knows firsthand what the impacts of such a study would mean for the PD community.
“This support motivates me to build a career dedicated to improving understanding and treatment of these often-overlooked autonomic dysfunction symptoms,” said Dr. Deraz. “Ultimately, this work could contribute to a broader focus on autonomic dysfunction as a key component of Parkinson’s care and research.”
