Among the many non-motor symptoms of Parkinson’s disease (PD) are blood pressure changes. One manifestation is neurogenic orthostatic hypotension, a condition in which blood pressure drops sharply when one moves from a reclining to a more upright position, such as standing up when getting out of bed or rising from a chair. The person may feel lightheaded, dizzy, lose balance, or, rarely, even lose consciousness. Besides being uncomfortable, the condition can be dangerous if it leads to a fall and subsequent injury. Orthostatic hypotension is common in mid- and late-stage PD, but it may also be an early sign of the disease.
Fortunately, there are strategies and other measures people can do for themselves to lessen the problem, and a variety of medications may help. Other conditions and medications can also lead to the condition, and they should be investigated in addition to a connection with PD. In this podcast, neurologist Dr. Katie Longardner of the University of California San Diego discusses the problem, how it is diagnosed, what people can do to alleviate it, and some of the research she and others are conducting.
Katherine ("Katie") Longardner, MD, earned her medical degree at Florida State University College of Medicine. She completed her internship, neurology residency, and two-year movement disorder fellowship at University of California San Diego (UCSD) Health. Dr. Longardner is a board-certified neurologist and movement disorder specialist who diagnoses and treats a variety of adult movement disorders, including Parkinson's disease, atypical parkinsonism, as well as tremor, myoclonus, dystonia, tics, and other hyperkinetic movement disorders. Her research focuses on parkinsonian non-motor symptoms, especially the relationship between orthostatic hypotension and cognition Parkinson's disease and related disorders. She developed an interest in orthostatic hypotension when she realized that this is an under-recognized yet treatable non-motor symptom that can be debilitating. She is currently collaborating with Dr. Sheng Xu's research team from the UCSD Dept. of Bioengineering to validate a non-invasive ultrasonic blood pressure monitor for continuous monitoring in orthostatic hypotension. Another research interest is utilizing non-invasive electrophysiological techniques to study movement disorders such as tremor.
Cuando uno piensa en la enfermedad de Parkinson (EP), es fácil asociarla más con los síntomas motores, como la rigidez o el temblor; pero también existen síntomas no motores, como los cambios de estado de ánimo, la ansiedad o la depresión.
En este episodio, hablamos con la doctora Elsa Baena, neuropsicóloga clínica en el Barrow Neurological Institute, Centro de Excelencia de la Parkinson’s Foundation, acerca de estos cambios cognitivos asociados con el Parkinson.
La doctora Baena explica la conexión entre el Parkinson y la cognición y cómo pueden prepararse las personas con Parkinson para estos cambios (no sólo las maneras farmacológicas, sino también las terapéuticas).
Asimismo aprenderemos acerca de los miembros del equipo de atención médica que pueden apoyar a una persona con Parkinson y a sus familiares con estos cambios cognitivos.
Lanzado: 18 de octubre de 2022
Elsa Baena, PhD, es neuropsicóloga en el departamento de neuropsicología clínica y en la unidad de neurorrehabilitación intrahospitalaria del Barrow Neurological Institute.
La experiencia de la Dra. Baena incluye la evaluación neuropsicológica y rehabilitación de individuos con una variedad de diagnósticos neurológicos, incluyendo condiciones neurodegenerativas, lesiones cerebrales adquiridas, enfermedades cardiovasculares y tumores cerebrales. También realiza evaluaciones pre y postquirúrgicas para la estimulación cerebral profunda (ECP o DBS, por sus siglas en inglés) y la cirugía de epilepsia. Domina el inglés y el español y es miembro de la Hispanic Neuropsychological Society, la National Latinx Psychological Association, la American Academy of Clinical Neuropsychology, la International Neuropsychological Society y la National Academy of Neuropsychology.
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How to Address Sleep Disorders in Parkinson’s for Sounder Slumber
Good sleep is not just important for brain function – it is essential for whole-body well-being. Sleep fuels heart and gut health, immune function and more. Sleep disturbances can be common in Parkinson’s disease (PD), but getting a good night’s sleep is possible. Discover how to identify and manage symptoms of insomnia, restless leg syndrome (RLS) and REM sleep behavior disorder (RBD).
The following article is based on a Parkinson’s Foundation Expert Briefing about managing sleep disturbances, hosted by Roneil G. Malkani, MD, associate professor, Northwestern University Feinberg School of Medicine, and neurologist, Northwestern Memorial Hospital, a Parkinson’s Foundation Center of Excellence.
While people are meant to spend about a third of their day sleeping, Parkinson’s-related brain changes and disease symptoms can disrupt the body’s internal clock.
These challenges, coupled with excess daytime sleepiness, can create a vicious cycle. Too much sleep during the day and fragmented sleep at night can cause fatigueand impact movement, function, mood and well-being.
Tackling Insomnia
Like good health, restful slumber takes work, often requiring daily exercise and time outside in natural daylight. Limiting naps, winding down before bed, minimizing screentime, sticking to a bedtime schedule and keeping a dark, cool bedroom are also key to deep sleep. Sometimes, just stepping out of bed when feeling restless to pursue a quiet activity until feeling tired can make all the difference.
However, even when following best practices for sleep, insomnia can persist in Parkinson’s:
As levodopa wears off, tremor or other movement symptoms can increase, making turning over in bed difficult.
Age-related aches or arthritis can also flare up at night.
Nocturia, the need to frequently urinate throughout the night, can affect as many as 60% of people with PD. An enlarged prostate can also increase urinary urgency for men.
Depression and anxiety, common and often undertreated in people with PD, can exacerbate sleeplessness. So can stress. Conversely, insomnia can cause mood changes and stress.
Sleep apnea, disrupted breathing during sleep, can impact nearly half of people with PD.
If tossing and turning continue despite a healthy sleeping environment, talk to your doctor, who can review and adjust the dosage and timing of current medications and get to the root of sleep problems. Tools used to diagnose sleep disorders often include your medical history, a sleep journal or a sleep study.
Insomnia treatment should be personalized to your individual needs and symptoms, and might include:
Cognitive behavioral therapy (CBT), strategies learned in person or online designed to tackle behaviors and thinking that interfere with good sleep.
Learned relaxation techniques, such as progressive muscle relaxation, silent repetition of certain calming words or phrases (autogenic training) or use of positive mental visualization (guided imagery).
Sleep restriction, which initially limits time in bed with the aim of promoting longer, deeper sleep.
Bright light therapy to lessen daytime sleepiness.
Your doctor might combine sleep therapy with medication. Common insomnia medications include:
Melatonin
Sleep-promoting z-hypnotics (zolpidem, eszopiclone and zaleplon) and benzodiazepines (clonazepam and temazepam)
Wakefulness-inhibiting therapies including trazadone, tricyclic antidepressants (amitriptyline and doxepin), mirtazapine, orexin antagonists (suvorexant, lemborexant and daridorexant), melatonergics (melatonin and ramelteon) and quetiapine
Other PD-related insomnia therapies can include safinamide, doxepin and eszopiclone.
Restless Leg Syndrome (RLS)
People who experience Willis-Ekbom disease, commonly known as restless leg syndrome, can feel an uncomfortable urge to move, as well as tingling, burning, aching or crawling sensations in the legs. While there isn’t always a known cause, RLS can be linked to neurological changes, medications, including some antidepressants, or iron deficiency. When RLS is suspected, based on a person’s symptoms, evaluating iron levels is necessary.
Treatments for iron deficiency include oral or intravenous iron. If iron levels are sufficient and symptoms continue, there are other treatment options available, including:
Alpha-2-delta ligands – gabapentin, pregabalin and gabapentin enacarbil.
Benzodiazepines, including clonazepam.
Medications such as dipyridamole or amantadine or in severe cases, opioids.
Tonic motor activation (TOMAC) is a new, below-the-knee nerve stimulation treatment approved by the U.S. Food and Drug Administration for moderate to severe RLS that can be used periodically throughout the day.
Though there is a strong relationship between Parkinson’s and RLS, researchers are discovering that the underlying causes of each disease may be very different. Parkinson's is connected to midbrain dopamine loss, while RLS seems to be linked to signaling changes in other areas of the brain.
Dopamine medications commonly used for PD were also once a mainstay RLS treatment. Evidence now shows long-term use of dopamine medications in people with RLS can sometimes cause brain signaling and RLS symptoms to worsen. In someone with Parkinson’s, careful tailoring of dopamine medications used to manage movement symptoms can also be effective in managing RLS symptoms.
REM Sleep Behavior Disorder (RBD)
During the rapid eye movement (REM) stage of sleep, when dreaming happens, typically only the eyes move. The brain shuts down large-body movement as a protective measure. Neurodegenerative diseases, including Parkinson’s, are linked to REM sleep behavior disorder (RBD) failure of this on-off switch. Sleep apnea and antidepressant use can also be linked to RBD.
RBD can cause someone to physically act out their dreams. A person might talk in their sleep, use harsh language or scream, or fall or jump out of bed. These vivid dreams can be mild or incredibly disruptive and may cause injury to the dreamer or their bed partner.
Nearly 50% of people with Parkinson’s report REM sleep behavior disorder symptoms, which can precede a Parkinson’s diagnosis by several years.
Creating a safe sleeping environment is essential for someone experiencing RBD symptoms:
Remove any objects that present a risk for injury.
If possible, lower the mattress to reduce fall risk.
Place protective cushioning on the corners of bedside furniture.
Add cushioning to the headboard, a bedrail to prevent falls and a mat or carpet beside the bed to cushion accidental falls.
Bed partners may get deeper sleep using a pillow barrier or separate bed.
A sleep study can diagnose or rule out RBD and medications are often used to manage symptoms. Treatments may include:
Melatonin (3 to 12 milligrams)
Clonazepam (.25 to 2 milligrams at bedtime) or pramipexole
Afrontando los cambios en las relaciones personales con Parkinson
Con el avance de la enfermedad de Parkinson (EP), probablemente descubra que las relaciones y los papeles que desempeña en su vida cambian.
En parte, ciertos síntomas de la EP, como la dificultad para hablar o el enmascaramiento, (también conocido como la reducción de la expresión facial o hipomimia) pueden afectar cómo se expresa y se comunica con los demás. Recuerde que su lenguaje corporal y su capacidad para hablar son importantes en su papel como padre o madre, cónyuge, amigo, abuelo o empleado. Ayudar a los demás a comprender la enfermedad de Parkinson puede darle poder sobre su experiencia con la EP.
La comunicación tras un diagnóstico
Aunque los síntomas del Parkinson —desde los síntomas motores, como problemas para moverse, hasta los síntomas no motores, como la depresión— pueden hacer que se sienta tentado a aislarse, recuerde que aún es posible mantener relaciones significativas y productivas. Para lograrlo, tendrá que abordar los problemas que afectan a su capacidad para comunicarse eficazmente con las personas de su vida.
Llegará el momento en que quiera informar a los demás de su diagnóstico. El momento correcto y la preparación pueden ayudar. Para empezar, probablemente no quiera hablar de todos los detalles de su enfermedad, pero dé a las personas más cercanas a usted información precisa acerca de su diagnóstico de Parkinson y cómo lo está manejando. Puede ser útil explicarles sus síntomas actuales: los que pueden ver y los que no. Ayúdeles a prepararse para lo que podría ocurrir más adelante y cómo podría afectarles. Piense en estas interacciones como el inicio de una conversación que, en el mejor de los casos, continuará mientras aprende a vivir con la EP.
Cambio de roles en la familia
Al irse adaptando a la vida con Parkinson y progresen los síntomas, sus roles dentro de la familia pueden evolucionar. Es posible que su cónyuge asuma un papel más bien de cuidador o aliado en el cuidado, que usted tenga que dejar de hacer ciertas tareas o que dependa de sus hijos adultos para que le ayuden a acudir a las consultas médicas. Los cambios de roles pueden ser difíciles, pero adaptarse es vital para vivir con Parkinson.
Si tiene problemas de reducción de la expresión facial y del habla desde el principio, es una buena idea prever el momento en el que pueda necesitar que otra persona le ayude a comunicarse, sobre todo en las consultas médicas. Si no tiene cónyuge o pareja que le ayude, busque a un familiar o amigo de confianza.
Comunicándose con su pareja
Los síntomas del Parkinson pueden ser increíblemente frustrantes para la persona que lo tiene, pero también pueden ser un desafío para su pareja. Puede que les cueste reconocerlo como la misma persona de antes del diagnóstico. Pueden sentir que están fracasando como aliados en el cuidado o cónyuges porque no pueden establecer vínculos que antes consideraban básicos.
Los problemas de comunicación entre los seres queridos pueden aumentar el estrés del cuidador y llevar al agotamiento. Dedique tiempo a trabajar en su comunicación. Esto puede ser dedicar un tiempo semanal para conectar con los demás, asistir juntos a un grupo de apoyo o buscar un consejero de salud mental. Cuando la comunicación se vuelve más fácil, la vida es más fácil para todos los implicados.
Comunicándose con sus hijos
Compartir el diagnóstico de Parkinson con amigos y familiares fomenta la conexión y el apoyo. También es importante decidir cuándo y cómo contárselo a los niños en su vida. Las respuestas sencillas a preguntas básicas pueden ayudar a los niños a entender mejor el Parkinson.
Consejos para hablar con sus hijos o nietos
Utilice términos sencillos para explicar su diagnóstico y los síntomas.
Si tiene más de un hijo, intente hablar primero con uno a la vez.
Prepárese para responder a preguntas básicas, como si el diagnóstico es mortal, si la EP es contagiosa y si a su hijo le dará.
Invite a su hijo a hacer preguntas y prepárese para que algunas de ellas sean de naturaleza delicada.
Haga una visita para que su hijo lo acompañe a su neurólogo para hablar de la enfermedad y de lo que puede esperar.
Informe a sus hijos que habrá algunos cambios en la vida diaria y que trabajar en equipo ayudará a su familia.
Enseñe a su hijo a explicar la enfermedad a sus amigos, en caso de que le pregunten por ella.
Comunicándose con sus amigos
En algún momento, querrá tener una conversación franca con sus amigos acerca del Parkinson. Intente mantener contactos con personas optimistas que comprendan su enfermedad y estén dispuestas a aprender más y, tal vez, incluso a echarle una mano cuando sea necesario.
Manejo de la vida laboral
Decidir cuándo informar a su empresa y a sus compañeros de trabajo acerca de su enfermedad es una decisión que sólo usted puede tomar. Comunicárselo a su empresa cuanto antes tiene sus ventajas, sobre todo si sus síntomas empiezan a empeorar y a afectar su desempeño. Ocultar su enfermedad en el lugar de trabajo puede provocar un estrés adicional, que puede empeorar los síntomas. Si su habla se ve afectada, los demás pueden empezar a sacar conclusiones precipitadas.
Informar a su jefe de su enfermedad puede permitir que su empresa se adapte a sus necesidades especiales. La Ley de Estadounidenses con Discapacidades (Americans with Disabilities Act o ADA, por sus siglas en inglés) obliga a las empresas a realizar adaptaciones razonables para los empleados. La ADA define estas adaptaciones como "cualquier modificación o ajuste de un puesto o del entorno de trabajo que permita a un solicitante o empleado cualificado con una discapacidad participar en el proceso de selección o realizar las funciones esenciales del puesto".
Planificar con anticipación
Consulte la política de personal de su empresa. Infórmese acerca de los permisos por enfermedad y el mantenimiento de los beneficios de salud.
Antes de dirigirse a tu jefe, decida si sólo va a informarle de su enfermedad o si va a solicitar adaptaciones específicas.
Escriba los puntos que desea tratar. Antes de la reunión, hable con su médico para que escriba una carta de apoyo y pídale recomendaciones concretas acerca de cómo aprovechar al máximo su tiempo de trabajo.
Sea franco y positivo. Indique su voluntad de trabajar juntos para identificar posibles adaptaciones que le ayuden a seguir haciendo su trabajo.
Vivir solo
Salir con alguien y entablar nuevas amistades puede ser difícil para cualquiera y más aún para alguien que vive con Parkinson.
Crear su equipo de apoyo para la EP
Al navegar por esta enfermedad, es importante que encuentre su comunidad de la EP. Estas son algunas ideas:
Grupos de apoyo. Explore los grupos locales de Parkinson y los grupos para personas con enfermedades crónicas.
Su lugar de culto. Podría encontrar un sentimiento de pertenencia y comunidad.
Organizaciones y eventos locales relacionados con el Parkinson. Asistir a eventos o trabajar como voluntario le ayudará a crear sólidos vínculos sociales. ¿No sabe por dónde empezar? Consulte nuestros eventos de Moving Day de la Parkinson’s Foundation, una caminata por el Parkinson, que se llevan a cabo en todo el país.
Salas de chat y foros de Internet. Muchas personas solteras con Parkinson han forjado amistades sólidas a través de comunidades virtuales.
Clases de ejercicio para el Parkinson. Llame a nuestra Línea de Ayuda 1-800-4PD-INFO (1-800-473-4636), opción 3 para español, para obtener una lista de clases de ejercicio y bienestar para la EP cerca de usted.
La enfermedad de Parkinson (EP) puede afectar el estado de ánimo. Aprenda acerca de las causas, las señales y qué hacer. No está solo.
Hasta un 50% de las personas con la EP experimentan depresión o ansiedad.
Entienda las causas
Las mismas sustancias químicas del cerebro que afectan el movimiento en la EP pueden influir además en las emociones. Factores como la genética, el estilo de vida, el estrés y sobrellevar la EP también pueden desempeñar un papel.
Conozca las señales
Es normal sentirse triste, ansioso o sin ánimo de vez en cuando. Si esto persiste o afecta su vida diaria, busque ayuda.
Si no se controlan, la depresión, la ansiedad y la apatía pueden empeorar los síntomas motores e impactar en la calidad de vida.
Depresión: Tristeza crónica, falta de energía, pérdida de alegría, desesperanza
Ansiedad: Preocupación, miedo, estrés, nervios o irritabilidad excesivos
Apatía: Falta de motivación, desinterés por actividades que antes disfrutaba
Llame o mande un texto al 988 si está en crisis.
Qué puede hacer
Hable con su medico
Existen opciones que pueden ayudar, como la terapia hablada y los medicamentos.
Manténgase activo
Con solo 30 minutos de actividad moderada, como caminar o hacer yoga, su cerebro suelta sustancias que ayudan a reducir el estrés, la ansiedad y la depresión.
Busque apoyo
Recurra a sus amigos, familiars o algún profesional de la salud mental. Para orientación, llame a nuestra Línea de Ayuda al 1-800-4PD-INFO (473-4636), opción 3 para español.
Conéctese y participe
Programe tiempo para conectar con los demás y busque formas de involucrarse. Aunque no tenga ganas, mantenerse activo puede mejorar su estado de ánimo.
Episode 179: Understanding Depression, Anxiety, and Apathy
Depression, anxiety, and apathy are common symptoms that are often overlooked in people with Parkinson’s disease (PD). Nearly half of those living with PD are likely to experience depression or anxiety at some point, but these non-motor symptoms often go unrecognized and undertreated. Because their signs can overlap and mimic one another, it can be challenging to pinpoint exactly what someone is going through.
Depression is known for feelings of persistent sadness or hopelessness. Anxiety might look like constant worry, excessive nervousness, or getting upset easily. Apathy, which is sometimes mistaken for depression, is the lack of motivation or interest to do things you used to enjoy. These symptoms can greatly impact your quality of life and worsen other PD symptoms.
In this episode, we speak with Lauren Zelouf, MSW, LCSW from Penn Medicine’s Parkinson’s Disease & Movement Disorders Center, a Parkinson’s Foundation Center of Excellence. She shares how to distinguish among these different symptoms, emphasizes the importance of recognizing the signs, and offers coping strategies for managing symptoms and seeking support.
Released: May 6, 2025
Lauren Zelouf, MSW, LCSW is a graduate of the University of Pennsylvania’s School of Social Policy and Practice, where she received her Master of Social Work in 2018. During her Master’s program, Lauren completed the Penn Aging Certificate (PAC) program and gained specialized skills and knowledge in the field of Geriatric Social Work. She completed her advanced-year field placement with the Penn Memory Center and stayed on as their Interim Social Worker in the summer following graduation. Lauren then spent two years as a Social Worker in a skilled nursing facility before returning to Penn Medicine.
Lauren is a member of the Pennsylvania Society for Clinical Social Workers (PSCSW), a support group facilitator for MSA NJ, a non-profit organization supporting those living in the tri-state area affected by multiple system atrophy, and an avid speaker in the movement disorders community. Lauren has done speaking engagements with MSA NJ, the Parkinson Council, CurePSP, the National Ataxia Foundation, and Mission MSA as well as for numerous patient and care partner programs. In her spare time, Lauren volunteers with the Jewish Relief Agency, a non-profit organization that provides hunger relief to residents in the greater Philadelphia area.
She has a passion for serving patients and families living with neurodegenerative disorders, and educating about the role of a social worker with this population. Lauren has been a Social Worker at Penn Medicine’s Parkinson’s Disease & Movement Disorders Center for almost five years.
Caring for the Mind: 12 Parkinson’s Mental Wellness Resources
At times, living with Parkinson’s disease (PD) can feel overwhelming. Managing symptoms, navigating physical and mental changes and making lifestyle adjustments can all take an emotional toll. As you find your path forward, it’s essential to acknowledge and take steps to care for your mental health.
Up to half of all people with Parkinson's will experience depression at some point, while 40% will experience anxiety. Nearly half of people with PD can also experience apathy, a loss of interest in life. These changes can be related to PD, due to a loss of dopamine and other chemical messengers the body makes to keep the brain healthy.
Whether you live with PD or you are a care partner to someone who does, it can be challenging to know where to begin. Explore our top resources that address mental wellness and PD:
1. Create space for all your emotions, even those of grief and loss.
Grief is a natural part of the Parkinson’s journey, especially following a diagnosis. Holding onto grief impacts your mind and body. Read 6 Questions for Exploring Your Parkinson’s-Related Grief to find healthy ways to honor and process feelings of loss.
Parkinson’s-related mood changes are commonly undertreated. There are screening tools and therapies available. Learn what to watch for and how to discuss treatment options with your doctor.
3. Cultivate a state of calm with Mindfulness Mondays, a series of guided relaxations.
Stress can worsen PD symptoms. Mindfulness, focusing on one thing at a time and blocking out distractions, promotes resiliency and reduces stress. Read Top Takeaways About Complementary Therapies and PD to explore more mind-body wellness practices.
Up to 14% of people receiving dopamine-replacement therapy can develop compulsive behaviors known as impulse control disorders. It is believed people perform these harmful behaviors (such as hypersexuality, hoarding or compulsive gambling) to relieve anxiety and tension.
5. Learn how Parkinson’s disease cognition – the mental skills we use to focus, solve problems, plan, follow instructions and more.
6. Break a sweat with our free, on-demand Fitness Friday workouts.
Exercise is medicine. Regular exercise can ease depression, anxiety and other non-movement symptoms of PD, as well as improve mobility and flexibility. Aim for at least 2.5 hours a week.
Restorative sleep helps repair the brain and body and enhances mental wellness – critical for people with Parkinson’s and care partners. Expert Tips on How to Get Good Sleep with Parkinson's also offers strategies to build a healthy sleep routine.
Gut and brain health are intertwined. A nutrient-rich diet – including colorful fruits and vegetables, beans, whole grains, poultry, nuts, seeds, fatty fish, olive oil and other healthy fats – can offer neuroprotective benefits and boost the number of good bacteria in the body.
10. Get social and connect with your PD community online or in person.
Loneliness can affect physical and mental health. Find your nearest Moving Day, A Walk for Parkinson’s to meet others living with PD or access wellness classes and other resources near you through the Parkinson's Foundation local Chapter network.
11. Don’t fear hard conversations. You are not alone.
People with Parkinson’s are at an increased risk of suicide. If you are struggling with thoughts of despair, opening up to someone you trust is the first step toward getting the help you need. How to Openly Discuss Suicide and Parkinson’s can help you talk about difficult feelings. The National Suicide Prevention Lifeline is available 24 hours a day at 1-800-273-8255.
12. Get inspired. Learn how others are navigating life with Parkinson’s.
My PD Story is a place for where people share how they are raising awareness of PD and overcoming its challenges. Learn what keeps others hopeful and consider sharing your own story.
We’re here for you. Contact our Helpline more information on mental health, referrals to professionals and resources in your area. Call 1-800-4PD-INFO (1-800-473-4636) or email Helpline@Parkinson.org.
This April, you met PAM, our guide to Parkinson’s Awareness Month. Each week, PAM shared essential tips and resources to give people helpful information about Parkinson’s disease (PD).
Explore Parkinson’s research studies on the Foundation's Join a Study page.
The Parkinson’s Foundation mission to help people live better with Parkinson’s continues strong year-round. Here are some ways you can help us raise PD awareness right now:
Mental health symptoms are common in Parkinson’s disease (PD). Learn the causes, signs and what to do. You are not alone.
Up to 50% of people with PD experience depression or anxiety.
Understand the Causes
The same brain chemicals that affect movement in PD can also impact emotions and behavior. Stress, isolation, life’s ups and downs and coping with PD also play a role.
Know the Signs
Feeling sad, anxious or unmotivated from time to time is normal. If these feelings last or interfere with daily life, reach out for help.
Depression, anxiety and apathy, if not managed, can worsen movement symptoms and impact quality of life.
Depression: Ongoing sadness, low energy, loss of pleasure, hopelessness.
Anxiety: Excessive worry, fear or stress, restlessness, irritability.
Apathy: Lack of motivation, disinterest in activities once enjoyed.
Call or text 988 if you’re in crisis.
What You Can Do
Talk to your doctor
Mental wellness care often includes lifestyle strategies, talk therapy and other forms of support. Sometimes, medications are needed too.
Keep moving
Even just 30 minutes of moderate activity, like walking or yoga, boosts brain chemicals that help reduce stress, anxiety and depression.
Seek support
Reach out to friends, family, counselors, support groups and other resources. For guidance, contact our Helpline at 1-800-4PD-INFO (1-800-473-4636).
Stay engaged
Schedule time to connect with others and look for ways to get involved. Even when you don’t feel like it, staying active can improve your mood over time.
Episode 177: The Role of Caregivers in Parkinson’s Dementia
Thinking and memory changes, also known as cognitive changes, may become more noticeable as Parkinson’s disease (PD) progresses. If these symptoms begin to interfere with everyday tasks, it may be a sign of dementia. Understanding the signs of dementia in Parkinson’s, along with its different names and variations, is essential for tailoring treatment options to your specific symptoms.
The early signs of dementia may be hard to notice at first. Often, it is the care partner or family member who witnesses the gradual decline in thinking abilities. Care partners play a crucial role in providing the best quality of life and support for their loved ones with Parkinson’s.
In this episode, Jori Fleisher, MD, MSCE and Claire Pensyl talk about Parkinson’s dementia. Dr. Fleisher is a movement disorders neurologist and co-director of the Parkinson’s Foundation Center of Excellence at Rush University in Chicago, where her research focuses on designing and implementing novel models of care and support for people living with neurodegenerative disorders. She is the Principal Investigator of the PERSEVERE trial, an entirely virtual, national trial to educate and empower care partners whose loved ones have Parkinson's or Lewy Body Dementia (LBD).
Claire, on the other hand, was the care partner for her husband, Ira, who had PD and LBD. She shares her experience witnessing Ira’s cognitive challenges as they became more apparent and describes how she became motivated to learn more about the signs of dementia as the disease progressed.
Released: March 25, 2025
Jori Fleisher, MD MSCE FAAN is a movement disorders neurologist and Associate Professor of Neurological Sciences at Rush University Medical Center. She co-directs the Rush Parkinson’s Foundation Center of Excellence and leads the Rush Advanced Interdisciplinary Movement Disorders Supportive Care (AIMS) Clinic, CurePSP Center of Care, and Lewy Body Dementia Association Research Center of Excellence. Dr. Fleisher completed her neurology, global health equities, movement disorders, and epidemiology training at the University of Pennsylvania. She has additional training in palliative care, health services and implementation research, and advocacy leadership. Supported by the NIH, foundations, and philanthropy, Dr. Fleisher’s research focuses on designing and implementing novel models of care and support for people living with neurodegenerative disorders. She is the Principal Investigator of the PERSEVERE Trial, a first-of-its-kind entirely virtual, national, randomized controlled trial to educate and empower family care partners whose loved ones have Parkinson's or Lewy Body Dementia. She is a co-investigator on several other national NIH-funded studies, an Editorial Board member of Brain & Life, an internationally recognized speaker, and has mentored over 25 trainees.
In 2006, Claire Pensyl and her husband, Ira Bell, married, retired, and then loved and laughed their way through more than 15 years of Parkinson’s Disease, Parkinson’s Disease Dementia and Lewy Body Dementia. Both had personal trainers, physical therapists and social workers, and Ira also had neuro-physical, occupational and speech therapists. They participated in person and on Zoom in exercise classes, Rock Steady Boxing classes, dance classes, improv classes, adaptive sailing, clinical trials with at least 4 different clinical teams, Fox Insight and Fox PPMI, support groups and many educational programs on PD, PDD and LBD. They developed a nationwide network of friends in the PD and LBD community. Claire now continues those friendships, is a member of care partner advisor councils for clinical trials at Rush University and the University of Rochester, volunteers for the Parkinson’s Program at Lake Forest Hospital, supports programming and research that benefits people with Parkinson’s, people with Lewy Body Dementia, and care partners now rather than in the future, is preparing to take the enrichment training course offered by the Dance for Parkinson’s program sponsored by the Mark Morris Dance Group and is an advocate for more palliative care for the PD and LBD community. She is grateful for the growth she experienced as a care partner and continues to be thankful for the opportunity to be Ira’s care partner.
