Tips for Daily Living

20 regalos adecuados para una persona con Parkinson

wrapped up present

¿No sabe qué regalar a su ser querido con la enfermedad de Parkinson (EP) para las próximas fiestas o un cumpleaños? El Parkinson es una enfermedad que progresa con el tiempo y conlleva una infinidad de síntomas y, a veces, un pequeño regalo puede ayudar a facilitar un poco la vida.  

Los siguientes productos no están respaldados por la Parkinson’s Foundation. 

1. Para quien quiere moverse 

Las investigaciones demuestran que el ejercicio habitual puede ayudar a aliviar los síntomas de la EP. Ayude a motivar a su ser querido a hacer ejercicio. Las pesas ligeras pueden llevar el gimnasio a su sala, mientras que un ejercitador de pedal de bicicleta portátil puede ayudar a activar la circulación, desde cualquier silla. Para entrenamientos a la carta, explora nuestros videos de Viernes de Ejercicio. 

2. Para quien necesita simplificar su cuidado personal 

Mantener la salud dental es importante para las personas con Parkinson, ya que los síntomas pueden complicar el cuidado dental. Un cepillo eléctrico o un dispensador de pasta de dientes ayudan en estas tareas dentales diarias. Simplifique otras tareas de cuidado personal con una afeitadora eléctrica para hombres y mujeres

3. Para quien ama ver a sus seres queridos 

¡Ver a su ser querido en persona puede ser el mejor de todos los regalos! Entre visita y visita, ayúdele a tener las manos libres con un dispositivo inteligente para videollamadas, como el Amazon Echo Show. Estos dispositivos suelen tener la ventaja añadida de contar con un calendario y alertas activados por voz. Ayude a su ser querido a configurar otras funciones inteligentes, como conectarlo a lámparas y electrodomésticos mediante enchufes inteligentes

4. Para quien necesita ayuda para probar cosas nuevas 

Un 40% de las personas con la EP utiliza terapias complementarias para obtener alivio de los síntomas. Considere regalar una experiencia que su ser querido pueda probar cerca, como una clase de Tai Chi o yoga, una sesión de acupuntura o un masaje. 

5. Para los amantes de la buena comida 

Es habitual que las personas con la EP experimenten cambios de peso: algunas pierden peso, mientras que otras aumentan. Un regalo infalible para cualquier foodie puede ser programar una deliciosa entrega de comida de un restaurante local o comprarle sus comestibles para la semana utilizando un servicio de entrega como Instacart o AmazonFresh

6. Para quien necesita cafeína e hidratación 

Regale el increíblemente popular vaso Stanley (resistente a roturas) o ayúdele a mejorar sus accesorios para el café . Si lo suyo es el té, opte por una tetera eléctrica con función de apagado automático. Las investigaciones demuestran que tomar cafeína con moderación puede ayudar con los síntomas motores de la EP. 

7. Para quien tiene dolores corporales 

Este masajeador de piernas con control remoto aportará relajación a su ser querido con la EP. Los masajeadores manuales y las almohadillas térmicas pueden ayudar a aliviar la rigidez muscular y el dolor que suelen asociarse a la EP. 

8. Para quien tiene estilo 

A veces, el Parkinson puede interferir en las actividades de la vida diaria, como vestirse. El calzado a la moda sin cordones puede simplificar el desafío de usar zapatos resistentes con agarre para hombres o mujeres con la EP. Un calzador de mango largo también puede ayudar. 

9. Para quien necesita un sueño de calidad 

La aromaterapia en forma de vaporizadores de ducha y bombas de baño puede ayudar a fomentar la relajación antes de acostarse. Las sábanas de seda y los pijamas de satén no sólo son cómodos, sino que tienen la ventaja añadida de ayudar a deslizarse para salir de la cama con más facilidad. 

10. Para quien quiere comer más sano 

Las investigaciones demuestran que la dieta mediterránea puede reducir el riesgo de deterioro cognitivo en todas las personas. Un libro de cocina de la dieta mediterránea o un bloc magnético para planificar las comidas pueden ayudar a su ser querido a organizarse y a probar nuevas recetas. Tenga en cuenta que la hora de comer también puede ser diferente. Este juego de cubiertos con peso puede ayudar. Aprenda más acerca de la EP y la nutrición

11. Para el aficionado a la televisión 

Haga que ver la televisión y comer bocadillos sea más cómodo con una bandeja de TV ajustable. Para el que lo ha visto todo, regale una suscripción mensual a un servicio de streaming que su ser querido aún no haya probado. 

12. Para quien ama revivir los recuerdos 

Un álbum de fotos personalizado tiene posibilidades ilimitadas y puede ser un gran tema de conversación. Elige un tema con valor sentimental: vacaciones familiares pasadas, una página dedicada a cada persona de la familia, lugares favoritos. Ver fotos del pasado puede ayudar con la memoria. 

13. Para el maestro de la palabra 

Escribir a mano puede resultar más difícil conforme avanza la EP. Un bolígrafo fácil de agarrar puede ayudar, mientras que un diario de gratitud puede ayudarle a llevar un registro de todas las cosas que le producen alegría. 

14. Para el amante de la naturaleza 

Si su ser querido no puede esperar a las actividades de primavera o verano, un sombrero nuevo puede ayudarle a protegerse del sol. Los bastones de trekking (o bastones para caminar) también pueden ayudarle a disfrutar de los paseos y las excursiones al aire libre. 

15. Para quien necesita darse un gusto

El autocuidado es esencial para las personas con Parkinson y sus aliados en el cuidado. Una lámpara de fototerapia puede ayudar a aliviar o prevenir la depresión estacional, mientras que un juego de lociones de spa puede ayudar a tratar los cambios en la piel, otro síntoma de la EP. Busque productos que traten la piel que pica, grasosa, seca e inflamada, todos ellos síntomas de la EP. 

16. Para quien disfruta de ejercitar el cerebro 

Los libros de rompecabezas pueden ayudar a dar variedad al día y promover la estimulación mental. La lectura de libros puede ayudar a las personas con la EP a mantener la claridad mental. 

17. Para quien ama contar historias 

Ayude a su ser querido a contar su historia. Cada semana, Storyworth books le envía a usted (o a su ser querido) una pregunta. Al final del año, las respuestas se encuadernan en un libro. Para compartir la experiencia, programe una llamada semanal con su ser querido y respondan juntos a la pregunta. 

18. Para los amantes de la cocina y la repostería 

Simplifique las tareas de la cocina con accesorios que pueden ahorrarle tiempo. Explore tablas de cortar adaptables, un dispensador de masa, una picadora de verduras o un abridor de frascos eléctrico

19. Para quien siempre está leyendo 

Los audiolibros permiten tener las manos libres y disfrutar de la lectura durante los paseos o los viajes largos en auto. Regale una suscripción a Audible de uno a 12 meses. Igualmente, los lectores de libros electrónicos, como Kindle, también pueden facilitar un poco la lectura a las personas con Parkinson. Ayude a configurar el Kindle con texto grande y otros ajustes personalizados. 

20. Para quien lo tiene todo 

Nunca subestime el regalo de su compañía. Invite a su ser querido al cine, al parque o simplemente ayúdele en casa. ¿Busca algo que hacer juntos? Explore experiencias locales, como museos o una clase de ejercicios para la EP. Encuentre su Chapter de la Parkinson’s Foundation más cercano para conocer las clases que se imparten en su localidad. 

¿Aún no sabe qué regalar a su ser querido? Considere hacer un donativo a la Parkinson’s Foundation en su nombre. Como parte de su donativo, puede enviar una eCard o imprimir una tarjeta. 

My PD Story

Henricus Ruhe headshot
Researchers

Henricus Ruhe, MD, PhD

2024 Impact Award 

Creating Virtual Brains to Study how Parkinson’s Disease and Depression Interact 

One of the most common non-movement symptoms experienced by people with Parkinson’s disease (PD) is depression. While the mental health impacts of PD-associated depression are debilitating on their own, they have also been associated with increased PD severity. This implies that the neurological changes in the brain that cause depression may also affect the progression of PD. Therefore, better understanding this overlap could improve treatment strategies for people with both.  

Henricus Ruhe, MD, PhD, and recipient of a Parkinson’s Foundation Impact Award, will be using sophisticated brain mapping technology to investigate this subject, seeking new ways to personalize treatments for those with depression and PD.  

For this research, he will collaborate closely with Morten L. Kringelbach, PhD, from Oxford University and Gustavo Deco, PhD, from Pompeu Fabra University in Barcelona, who developed the techniques.  

Dr. Ruhe, from his lab at the Radboud University Medical Center in Nijmegen, Netherlands, a Parkinson’s Foundation Center of Excellence, plans to utilize a new neuroscience research tool called whole-brain computational modeling. The science and math involved with this tool is complex, but put simply, this technique allows researchers to take data from a person’s MRI scans and create a digital model of their brain.  

Within each of these models are nodes, small brain areas whose neurons seem to generally activate together. Based on blood flow measured with MRI-data, the interaction patterns between nodes are mapped and measured to track how signaling information flows through the brain. Additional data, such as physical anatomical distances in the brain, will also be used to bolster the models. 

Using previously collected clinical MRI data from people with PD, some with and some without depression, Dr. Ruhe will be able to generate brain models for his testing. By analyzing and comparing them, he hopes to identify how information flow in the brain is altered by depression in PD contexts.  

In addition, in another cohort of PD-patients without and with depression, where MRI scans taken without (OFF) and with (ON) the use of levodopa medication will provide valuable information about how PD treatment affects depressed and non-depressed brains differently. 

These established brain models can then be used to conduct in silico experiments — meaning that instead of working with cells in petri dishes (in vitro) or with live animals (in vivo), the testing is done with computer simulations.  

In these simulations, Dr. Ruhe will aim to modify specific nodes and see how the rest of the brain reacts and reorganizes in response. These disruptions can be designed to mimic medications, estimating how they would work in the brains of people with and without PD-linked depression.  

Performing these perturbations across the different PD brain models and comparing the outcomes will provide: 

  • Major insights into which regions are most critical to brain function in PD and depression. 

  • What therapies potentially work best for people with PD and depression, improving the scope and effectiveness of personalized treatments in the future.  

Speaking on the importance of this award for his research goals, Dr. Ruhe said, “I am honored to have received this prestigious award. This will help our team and the Parkinson’s community to develop whole-brain models to better understand and preferably modify non-motor symptoms in PD. This will have substantial impact on selections of treatment of depression in PD patients by identifying susceptible brain regions for different forms of treatment.” 

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

My PD Story

Laine Shakerdge
Family Members

Laine Shakerdge

My dad, “Poppy”, “Chellini”, “Albert” was a fiercely independent self -made man, a Jewish Iraqi immigrant who arrived in New York, NY, all on his own, on his 16th birthday in 1939. He hustled hard and lived the American dream. He spoke Arabic, English, some Spanish, some Yiddish, traveled the world with my sister and me. He was filled with passions for Broadway plays, good belly dancing and live music. Parkinson’s disease (PD) robbed him of his independence, his ability to speak, to feed himself, and to walk, but his joys remained the same, and we kept them coming… 

Parenting a parent is emotionally stunning at first, but it felt good to do for him what I knew would bring him joy. Middle eastern food delivery, of course. And professional belly dancing! We hoisted him out of bed in some hospital crane contraption, rolled his wheelchair into the living room, and voila… His own private belly dancer, every month, and a dance party with his little grandsons and neighbors from the apartment building. We were keeping traditions alive! 

I also asked his relatives and the network of people who’d known him for decades to send me a paragraph of their fondest memory of my dad and created a book of these stories. So, despite his diminished abilities and social outings, he could hear and feel that continued love and respect. He loved every single story.  

With mobility limited, and conversation topics getting smaller, we filled time by reading joke books —short jokes. Nothing’s better than laughter. And weekly massages from a professional masseuse to soothe the body that was betraying him.   

My father died just shy of his 82nd birthday. And now, sadly, I have two friends, peers, recently diagnosed with Parkinson’s.  

My partner and I launched Jewelry for Good to raise funds for Parkinson’s Foundation. We turn unwanted/broken/out of style/haven’t-worn-it-in-years gold jewelry and sterling silver items like bowls, trays, flatware that our kids don’t want to inherit, into cash for Parkinson’s Foundation. Donors get a tax deduction receipt for the full value, and the Parkinson’s Foundation gets the check to aid their important work.  

Don’t wear it? Donate it! 

Don’t use it? Donate it! 

Jewelry for Good.  

The Parkinson’s Foundation works with Jewelry For Good to donate your unwanted items or help you host a Bring Your Bling event. Learn more

Discover new ways to give to the Parkinson’s Foundation today or create your own fundraiser as a Parkinson’s Champion. Learn more

Raise Awareness

Abordar la apatía y otros trastornos del estado de ánimo en la enfermedad de Parkinson

Man leaning on counter

La apatía, la sensación de haber perdido las ganas de vivir, es uno de los síntomas más desafiantes de la enfermedad de Parkinson (EP). La apatía puede hacer que resulte difícil relacionarse con los demás, participar en las actividades cotidianas y controlar los síntomas de la EP. Junto con la depresión y la ansiedad, la apatía en la EP a menudo se pasa por alto y no se atiende lo suficiente. Aprender acerca de los síntomas de la apatía, cómo puede interactuar con otros trastornos del estado de ánimo y las estrategias para su manejo puede contribuir a su bienestar mental. 

El siguiente artículo se basa en una  Charlas con expertos de la Parkinson’s Foundation (Expert Briefings) acerca de la apatía y la salud mental en el Parkinson, con Aaron Malina, neuropsicólogo clínico con doctorado y certificado por el ABPP, quien trabaja en el Northwestern Medicine Lake Forest Hospital, un Centro de Excelencia de la Parkinson’s Foundation. 

Cómo afectan el estado de ánimo los cambios cerebrales de la EP  

La apatía, junto con la ansiedad, la depresión y los cambios cognitivos, puede ser frecuente en el Parkinson. Los cambios en la química cerebral que causan los síntomas motores en el Parkinson también pueden afectar el estado de ánimo. Algunas personas pueden experimentar trastornos del estado de ánimo incluso antes de que aparezcan los síntomas motores. 

El Parkinson impacta en zonas profundas del cerebro, alterando complejas redes de comunicación. Estos cambios están relacionados con una menor producción de: 

  • Dopamina: sustancia química responsable del movimiento y el estado de ánimo 

  • Noradrenalina: sustancia relacionada con el movimiento, el estado de ánimo, la salud cognitiva y más  

  • Serotonina: sustancia química que ayuda a regular las emociones  

  • Acetilcolina: sustancia química que ayuda con las habilidades de pensamiento 

Comprender la apatía 

La apatía afecta a entre un 16 y un 46% de las personas con Parkinson. La apatía puede aparecer aislada, como componente de otras afecciones psiquiátricas como la depresión, o en enfermedades neurológicas como el Parkinson.  

En la EP, la apatía es un trastorno de la motivación debido a la alteración de las redes cerebrales. Aunque hay factores externos que pueden influir en la apatía, ésta no es una reacción emocional y no se debe a dificultades de pensamiento o a sufrimiento emocional.  

Las personas con apatía tienen dificultades para procesar, identificar y diferenciar entre resultados buenos y malos. Esto les dificulta responder en consecuencia. La apatía puede complicar el asistir a las citas médicas, tomar medicamentos o cuidar de sí mismo. En casos extremos, alguien con apatía puede no moverse ni hablar.  

La persona que experimenta apatía puede mostrar poca expresión emocional o parecer indiferente, desinteresada o remota. Esto puede verse agravado por los síntomas de la EP como la cara de máscara (hipomimia) que dificultan la comunicación de las emociones.  

Tipos de apatía y tratamientos  

Los síntomas de la apatía son causados por una disfunción profunda en el mesencéfalo y los lóbulos frontales del cerebro, que procesan la información emocional, el impulso, el movimiento y el comportamiento. Las personas con la EP de mayor edad, con menos educación sanitaria, que experimentan depresión, deterioro cognitivo o trastornos del sueño MOR (por movimientos oculares rápidos), así como aquellas con Parkinson avanzado, corren un mayor riesgo de desarrollar apatía. 

Es posible que su médico le pida que responda un cuestionario o le haga una entrevista para entender cómo afecta su vida la apatía e identificar la terapia más adecuada.  

La apatía puede manifestarse de cuatro maneras: 

  1. Síntomas conductuales: incluyendo falta de iniciativa y productividad. Hace que la persona se vuelva más dependiente de los demás. Los agonistas de la dopamina pueden ayudar. Sin embargo, estos medicamentos se asocian a trastornos del control de impulsos.  

  1. Síntomas emocionales: provocan una falta de respuesta a los acontecimientos positivos y negativos, menos interés por lo que les ocurre a los demás, menos afecto e indiferencia general. Además de los agonistas de la dopamina, pueden recetarse metilfenidato o agentes serotoninérgicos.  

  1. Síntomas cognitivos: afectan el interés de la persona por aprender cosas nuevas y su capacidad para planificar, organizar o participar en actividades. Pueden recetarse inhibidores de la colinesterasa.  

  1. Interacción social: disminuye con la apatía. La falta de interés por participar en las relaciones puede afectar a la pareja, los familiares y los amigos. 

Además de los medicamentos, el ejercicio, la interacción social, la atención plena y la terapia cognitiva desempeñan un papel importante en el tratamiento de la apatía. La terapia no invasiva de estimulación magnética transcraneal (EMT), que estimula las células del cerebro, podría mejorar los síntomas. La estimulación cerebral profunda (ECP), una cirugía neurológica para tratar algunos síntomas del Parkinson, a veces también puede mejorar la apatía.  

Apatía y cambios cognitivos 

La apatía puede ser un factor predictivo del cambio cognitivo en el Parkinson. Muchas personas con la EP experimentan un deterioro cognitivo leve, que puede afectar la función ejecutiva; es decir, la capacidad de la persona para planificar, organizar y resolver problemas. Las personas con cambios cognitivos importantes pueden experimentar una mayor apatía. 

Separar la apatía de la depresión 

Aunque la apatía y la depresión se producen en diferentes partes de los lóbulos frontales, ambas pueden traslaparse. Los síntomas que se observan tanto en la apatía como en la depresión incluyen: 

  • Movimiento lento   

  • Incapacidad para experimentar alegría  

  • Falta de energía física  

  • Disminución del entusiasmo  

La depresión afecta a un 50% de las personas con Parkinson. Aunque la depresión puede causar tristeza o irritabilidad, su aparición no depende de un acontecimiento triste o traumático. La depresión puede provocar cambios en el peso, el apetito y el sueño. Alguien con depresión puede experimentar falta de autoestima, culpabilidad o pensamientos de autolesión o suicidio.  

Las personas con más síntomas motores y las mujeres presentan un mayor riesgo de depresión en la EP. Las personas con Parkinson avanzado, ciertos subtipos genéticos de la EP o con deterioro cognitivo también son más propensas a la depresión. 

Ansiedad y cognición  

La ansiedad, una preocupación excesiva que es difícil de controlar, puede presentarse hasta en un tercio de las personas con Parkinson y puede afectar la cognición y la función física. Alguien con ansiedad puede sentirse triste, irritable, nervioso o inquieto, puede cansarse o fatigarse con facilidad, tener problemas de concentración o para dormir, o presentar un aumento de los dolores o molestias musculares. A algunas personas con Parkinson se les diagnostica ansiedad junto con depresión.  

La fobia social (miedo o ansiedad ante las situaciones sociales) es un trastorno de ansiedad frecuente en la EP. Alguien que experimenta fobia social teme ser percibido negativamente por los demás y evita las situaciones sociales o las soporta con un miedo intenso.  

Las personas que desarrollan Parkinson a una edad más temprana son más propensas a la ansiedad. La ansiedad también tiende a empeorar en las personas con la EP durante los periodos en "off", cuando el efecto de la levodopa desaparece. 

En busca de tratamiento 

Las revisiones periódicas para detectar cambios cognitivos y del estado de ánimo son un aspecto importante de la atención de la EP. Sin embargo, no todos los médicos especialistas en Parkinson preguntan por la salud mental o detectan cambios en el estado de ánimo. Si experimenta cualquier signo de apatía, depresión, ansiedad o cambios cognitivos, hable con su médico.  

La terapia farmacológica se utiliza a menudo en combinación con la terapia de conversación (cognitivo-conductual) para controlar el bienestar mental en la EP. Los medicamentos más utilizados para tratar la depresión y la ansiedad son los ISRS (inhibidores selectivos de la recaptación de serotonina) y los IRSN (inhibidores de la recaptación de serotonina y norepinefrina). La terapia cognitivo-conductual ayuda a la persona a comprender cómo influyen los síntomas de su estado de ánimo en su forma de pensar y sentir y le proporciona herramientas para hacer frente a los síntomas. 

El ejercicio o movimiento habitual también es esencial para el control del Parkinson y el bienestar mental.   

Aprenda más 

Descubra más acerca de la salud emocional en el Parkinson con estos recursos: 

My PD Story

Pagán
People with PD

Kylee Pagán

At 18 years old I wanted my college degree and to travel the world. So, in 1997, I joined the United States Air Force and spent the next 10 years meeting an array of extraordinary people from around the world. I graduated with my bachelor’s in healthcare administration and explored my assigned locations of Texas, Alaska, Germany and Virginia. My service time was honorable and memorable.  

Kylee, Husband, and Kids

As my family grew, new opportunities presented themselves. We arrived in Carmel, IN in the fall of 2015. I continued my training programs and completed my master’s degree in healthcare informatics. I focused on raising our children, a blended family, but as the days passed there was a new wave of uncertainty with my thoughts, movement and people — something I’ve never experienced throughout my lifetime.  

In 2016, I noticed physical changes in my body. I seemed to have become clumsy and uncoordinated. I began losing my balance and falling. I recognized my left arm had stopped working, as if it was an ornament on my body. My symptoms got worse, causing tremendous frustration, heartache and fear because nobody in my medical circle of specialists could tell me what was wrong with me!  

I awoke one morning to find that a clump of hair had fallen out leaving behind a bald, baby-smooth patch of the scalp, and then, increased hair thinning began. It’s impossible to imagine the mental state of living with an unknown condition affecting your physical and mental state with the harsh realization that no one knows what was wrong.  

In 2017 I had 96 appointments for multiple diagnostic testing, leg therapy, hand therapy, vascular testing and injections. As my left arm and hand worsened, my physical therapist finally said, “It appears as though your neurons are not firing properly.” She reopened the window to another conversation with the neurology department who finally questioned a neurological condition, but I was told I was too young to even think of such a disorder.  

In 2018 the search for the answer intensified with about 70 appointments. I was referred to the Mayo Clinic in Rochester, MN. Their neurology team ruled out degenerative brain diseases but oddly enough was able to track a constant tremor in my left leg and a functional tremor in my left arm. Due to distance and cost, they referred me to the Movement Disorder Clinic at Indiana University Hospital, a Parkinson’s Foundation Center of Excellence.   

On September 5, 2019, I finally saw the movement disorder specialist, Ruth Baird, MD. She diagnosed me with young-onset Parkinson’s disease. For four years I suffered, feeling and noticing changes about myself that no one could diagnose. She diagnosed my condition in 10 minutes. I stayed silent and emotionless through the diagnosis, but tears began to stream down my face as I left the office, bittersweet I kept telling myself. 

I engaged with my family and tried not to think of the worst. I had so many questions, among them:   

  • How long do I have before it gets worse?  

  • How do I love life with the heartbreaking realization that my life has changed forever?  

Pagán

The heartbreaking reality that no one could tell me the how and when. My life now had an expiration date, unknown but defined by a disease and its relentless progression. It’s sensitive, internal, and frightening!   

I enrolled in a full genetic tracing for Parkinson’s where every known genetic factor was evaluated. Results showed that I had no genetic factors associated with Parkinson's. After receiving my genetic printouts, I re-evaluated where my head rested over the years and stressors known and unknown.  

I then reviewed my military and civilian medical records and discovered I may have experienced symptoms as early as 2003. I had a funny feeling in my left leg, but appointments could not explain nor find the cause. Around 2006 issues with my left arm began. Military physicians noted unexplained, pulled muscles, tendinitis and even ulnar issues. For the next several years I sought care when these unknown symptoms were at their worst.   

My mind traveled “How does one prepare for living with Parkinson’s?” It seems to be a trial-and-error approach to finding what combination is best for helping one deal with symptoms. Parkinson’s seems to be like a piñata — a piñata is never filled the same way, and each person has a different way to strike for it to break. 

In 2019 the diagnoses of Parkinson’s changed all my plans, along with driving my desire to help others in need. My health and functionality to sustain myself became my forefront. As my training and research in physical health increased I knew my voice and desire could help many more.  

Restoring muscle movement, circulation and revitalizing sensitivity to any extremity are important factors to living life. In 2021 I became a certified Rock Steady Coach at HQ Rock Steady Boxing. In 2022 I transformed an opportunity to help others who battle challenges. My husband Frido and I opened a business in Carmel IN, called Keeps Moving, Mindful Motivational Movement.  

In my personal time, I assist veterans with health benefits, care management, disability claims and questions. Having an opportunity to open doors for others and helping with one’s daily needs is the greatest reward.   

Helping myself and others understand how to deal with the “new me” or the “new you” will always be a topic of conversation. I’m still me just with a different flair.  

I am fortunate to have found outlets like Rock Steady Boxing HQ, local and nationwide support groups, and vital resources in organizations locally and worldwide, such as the Indiana Parkinson Foundation, Parkinson Awareness Association of Central Indiana and the Parkinson’s Foundation. I am mostly fortunate to have an array of individuals who support, cheer and stand beside me day in and day out!  

Caregiver Corner

Finding Balance: 8 Tips for Avoiding Caregiver Burnout

Caregiver month

November is National Family Caregivers Month, a time to honor those who care for their loved ones. This year, the Parkinson’s Foundation is highlighting the importance of caregiver well-being and acknowledging the challenges of burnout. Addressing caregiver burnout is essential, as it often affects both the caregiver's health and the quality of care provided. 

Caregivers play a crucial role in the lives of people with Parkinson's disease (PD), providing invaluable support and assistance that enhances their quality of life. Life does not stop with a PD diagnosis — but PD and its symptoms change over time, as does the role of a care partner.  

Being a care partner can be rewarding, but the stress and change of caring for someone can be emotionally, mentally and physically draining. Recognizing caregiver burnout and its signs is essential for maintaining your well-being and providing the best possible care for your loved one. 

What is caregiver burnout? 

Caregiver burnout is a state of physical, emotional and mental exhaustion that may include a change in attitude, from positive and caring to negative and unconcerned. Burnout can occur when caregivers don't get the help they need, or if they try to do more than they are able, physically or financially. 

Caregiver burnout symptoms can include: 

  • Fatigue 

  • Irritability, frustration or anger 

  • Feelings of hopelessness or helplessness 

  • Changes in sleep patterns 

  • Withdrawal from social activities 

Why Addressing Caregiving Burnout is Important 

Addressing caregiver burnout helps preserve the caregiver's well-being, ensures quality care for loved ones and fosters a supportive caregiving environment overall. 

You cannot pour from an empty cup. It’s important to give yourself time to rest and fill up. As a care partner, your well-being is foundational to sustaining compassionate care and providing support to your loved one.  

If you’re experiencing symptoms of caregiver burnout or are aiming to prevent it, here are eight tips that can help: 

Tip 1: Make Time for Yourself 

Carve out moments for self-care and relaxation. Taking breaks allows you to recharge mentally and emotionally, reducing the risk of burnout.  

Balance is key. While caring for others is important, neglecting your own needs can lead to exhaustion. Whether it's a short walk, reading a book or pursuing a hobby, these moments of respite are crucial for maintaining your well-being and sustaining your ability to provide support to your loved one over the long term. 

Carla Velastegui boat
MY PD STORY: Carla Velastegui

Since she was 15 years old, Carla Velastegui has been a care partner to her mother. She has learned along the way that taking time for herself is crucial to avoiding burnout.

Tip 2: Set Realistic Expectations 

Be realistic about what you can handle. Prioritize tasks and focus on what's most important. Understand your capabilities and limitations and ask for help when you need it. 

Tip 3: Celebrate Small Victories 

Celebrate small victories and recognize the progress you’ve made in your caregiving journey. These milestones, whether big or small, serve as reminders of your dedication and the positive impact of your efforts on your loved one's well-being. 

Tip 4: Delegate and Accept Help 

Even if you are the sole care partner for your loved one, don’t be afraid to ask for outside help. Whether that be family, neighbors, friends or professionals, know that you don’t have to do everything on your own. Asking a family member to sit and watch TV with your loved one while you go to the movies can be a welcome mini break.  

There are also many communities and online resources for care partners that offer support, information and practical advice to navigate the challenges of caregiving. 

Tip 5: Seek Emotional Support 

If you're unsure about what to expect or how to manage certain aspects of caregiving, don't hesitate to seek advice from healthcare professionals, support groups or experienced caregivers. They can provide valuable insights and practical tips based on their expertise. 

Connecting with others who understand your situation can be an effective way to reduce feelings of isolation and self-doubt as a caregiver. 

Going to therapy can also be a huge help in managing stress, providing a safe space to express your emotions, gaining perspective on challenges and developing coping strategies. 

Tip 6: Exercise Regularly and Get Enough Sleep 

While easier said than done for many, regular exercise has been linked to lower depression and stress levels. Find something you enjoy — whether it’s a walk in nature, yoga or going to a workout class. Exercise may also help you sleep better at night. 

Aim for seven to nine hours of sleep at night to maintain your physical and emotional health, which is crucial for effectively and sustainably managing the duties of caregiving. 

Tip 7: Stay Organized 

Staying organized can be a simple but effective way to reduce stress levels. Keeping track of appointments, medications and important information can help you avoid feeling overwhelmed. 

As a caregiver, you know some things are out of your control. Control what you can and try to stay flexible, keeping in mind some days (or hours) are better than others when it comes to PD symptoms.  

Tip 8: Incorporate Stress-Relief Techniques into Your Daily Routine 

Incorporating stress-relief techniques into your daily routine can improve your ability to manage burnout. Techniques like deep breathing exercises help calm the mind and reduce physical tension. Meditation offers a chance to practice mindfulness, allowing you to step back from stressors and regain perspective.  

Caregiver burnout can affect anyone helping a loved one with Parkinson's. Incorporating just some of these tips can help you avoid burnout and prioritize your own needs. 

We're here for care partners. For more information:  

  • Sign up for free online courses through our Care Partner Program 

Raise Awareness

Addressing Apathy and Other Mood Disorders in Parkinson’s

Man on couch

Apathy, the feeling of having lost your zest for life, is one of the most challenging symptoms of Parkinson’s disease (PD). Apathy can make it a struggle to engage with others, take part in daily activities and manage PD symptoms. Along with depression and anxiety, apathy in PD is often overlooked and undertreated. Learning the symptoms of apathy, how it can work alongside other mood disorders and management strategies can support your mental well-being. 

The following article is based on a  Parkinson’s Foundation Expert Briefing about apathy and mental health in Parkinson’s, hosted by Aaron Malina, PhD, ABPP, clinical neuropsychologist at Northwestern Medicine Lake Forest Hospital, a Parkinson’s Foundation Center of Excellence

How PD Brain Changes Affect Mood  

Apathy, along with anxiety, depression and cognitive changes, can be common in Parkinson’s. The brain chemistry changes that cause movement symptoms in Parkinson’s can also impact mood. Some people might experience mood disorders even before movement symptoms start. 

Parkinson’s impacts areas deep within the brain, disturbing complex communication networks. These changes are linked to a decrease in the production of: 

  • Dopamine: chemical responsible for movement and mood 

  • Noradrenaline: a substance related to movement, mood, cognitive health and more  

  • Serotonin: chemical that helps regulates emotions  

  • Acetylcholine: chemical that helps with thinking abilities 

Understanding Apathy 

Apathy impacts 16 to 46% of people with Parkinson’s. Apathy can occur on its own, as a component of other psychiatric conditions, such as depression, or in neurological diseases including Parkinson’s.  

In Parkinson’s, apathy is a motivation disorder due to disruption of the brain’s networks. Although outside factors can influence apathy, it is not an emotional reaction and is not due to thinking difficulties or emotional distress.  

People with apathy have difficulty processing, identifying and differentiating between good or bad outcomes. This makes it difficult for them to respond accordingly. Apathy can make it challenging to attend healthcare appointments, take medications or practice self-care. In extreme cases, a person with apathy may not move or speak.  

A person experiencing apathy may show little emotional expression or seem indifferent, disinterested or uncaring. This can be compounded by PD symptoms like masked face, making it harder for someone to communicate their emotions.  

Types of Apathy & Treatments  

Apathy symptoms are caused by a dysfunction deep in the midbrain and the frontal lobes of the brain — which process emotional information, drive, movement and behavior. People with PD of increased age, with less health education, who experience depression, cognitive impairment or rapid eye movement sleep behavior disorder, as well as those with advanced Parkinson’s, are at greater risk of developing apathy. 

Your doctor may ask you to fill out a questionnaire or interview you to understand how apathy impacts your life and to identify the best therapy.  

Apathy can show up in four ways: 

  1. Behavioral symptoms: include lack of initiative and productivity. Causes a person to become more dependent on others. Dopamine agonists may help. However, these medications are associated with impulse control disorders.  

  1. Emotional symptoms: cause a lack of response to positive and negative events, less concern for what's going on with others, less affection and general indifference. In addition to dopamine agonists, methylphenidate or serotonergic agents might be prescribed.  

  1. Cognitive symptoms: impact a person’s interest in learning new things and the ability to plan, organize or participate in activities. Cholinesterase inhibitors might be prescribed.  

  1. Social engagement: diminishes with apathy. A lack of interest in participating in relationships can impact significant other, family members and friends. 

In addition to medications, exercise, social engagement, mindfulness and cognitive therapy play a major role in addressing apathy. Noninvasive transcranial magnetic stimulation (TMS) therapy, which stimulates cells in the brain, might improve symptoms. Deep brain stimulation (DBS), a neurological surgery to treat some Parkinson's symptoms, can also sometimes improve apathy.  

Apathy and Cognitive Change 

Apathy may be a predictor of cognitive change in Parkinson’s. Many people with PD experience mild cognitive impairment, which can impact executive function — a person’s ability to plan, organize and problem solve. People with more significant cognitive change can experience greater apathy. 

Splitting Apathy from Depression 

Although apathy and depression occur in different parts of the frontal lobes, both can overlap. Symptoms seen in both apathy and depression include: 

  • Slow movement   

  • Inability to experience joy  

  • Lack of energy  

  • Decreased enthusiasm  

Depression impacts 50% of people with Parkinson’s. While depression can cause sadness or irritability, its onset does not require a sad or a traumatic event. Depression can cause changes in weight, appetite and sleep. A person with depression may experience a lack of self-worth, guilt or thoughts of self-harm or suicide.  

People with more movement symptoms and women are at greater risk for depression in PD. People with advanced Parkinson’s, certain genetic subtypes of PD or cognitive impairment are also more prone to depression. 

Anxiety & Cognition  

Anxiety, excessive worry that is challenging to control, can occur in up to a third of people with Parkinson’s and can impact cognition and physical function. A person with anxiety may feel sad, irritable, edgy or restless, may tire or fatigue easily, have trouble concentrating or sleeping, or have increased muscle aches or soreness. Some people with Parkinson's are diagnosed with anxiety along with depression.  

Social phobia, fear or anxiety about social situations, is a common anxiety disorder in PD. A person experiencing social phobia fears being perceived negatively by others and avoids social situations or endures them with intense fear.  

People who develop Parkinson’s at a younger age are more prone to anxiety. Anxiety also tends to worsen for people with PD during “off” times — when the effect of levodopa medication wears off. 

Seeking Treatment 

Regular screening for mood and cognitive change is an important aspect of PD care. However, not every Parkinson’s doctor asks about mental health or screens for mood changes. If you experience any signs of apathy, depression, anxiety or cognitive change, talk to your doctor.  

Medication therapy is often used in combination with talk-based (cognitive behavioral) therapy to manage mental well-being in PD. The medications most used to treat depression and anxiety are SSRIs (selective serotonin reuptake inhibitors) and SNRIs (serotonin and norepinephrine reuptake inhibitors). Cognitive behavioral therapy helps a person understand how their mood symptoms impact how they're thinking and feeling and gives them tools to address symptoms. 

Regular exercise or movement is also essential to Parkinson’s management and mental well-being.   

Learn More 

Discover more about emotional health in Parkinson’s with these resources: 

Videos & Webinars

Expert Briefing: Addressing the Challenge of Apathy in Parkinson's

September 11, 2024

Apathy can significantly impact the quality of life for people with Parkinson’s disease (PD). This invisible symptom can make it difficult to maintain interest in daily activities and to effectively manage PD symptoms. Apathy can be frustrating for people with Parkinson’s, care partners and loved ones, but understanding it as a symptom and finding ways to cope with it are key to ensuring a good quality of life.

Download Slides

Presenter

Aaron C. Malina, PhD, ABPP
Clinical Neuropsychology 
Northwestern Medicine-Lake Forest Hospital
A Parkinson's Foundation Center of Excellence

Raise Awareness

How To Start A Support Group

Support Group Image

It is vital for people living with Parkinson's disease (PD) and care partners to make social connections and find support. Whether you have been newly diagnosed with PD, have been living with PD for a while, or are caring for someone with PD, connecting with others can help. 

Challenges associated with PD, including movement symptomscognitive changes and emotional fluctuations, can lead to social withdrawal and isolation. Engaging in social activities can provide a valuable support network, combat feelings of depression and loneliness, maintain cognitive function and emotional well-being.  

Why are support groups important? 

Finding the right support group can help you build your PD community. In these groups, people share their experiences, learn from each other, and get access to resources that suit their needs.  

Through these connections, individuals affected by PD not only find companionship and empathy but also gain a sense of belonging and resilience that can improve their PD journey. With the support provided by groups, people affected by PD can navigate the condition with greater confidence, hope and well-being. 

Types of Support Groups 

There are many kinds of PD support groups available. They include: 

  • People with PD: These groups focus on people living with PD, allowing them to share their experiences, learn from each other and offer support. 

  • Care partners: Care partners know Parkinson’s and its ups and downs. These groups provide a space for care partners to share their challenges, receive support and learn coping strategies. 

  • Combined Groups: Many support groups welcome people with PD and care partners, fostering a supportive environment where both groups can share experiences, offer mutual support and learn from each other's perspectives. 

  • Young-Onset PD (YOPD): These groups cater to those diagnosed with PD at a younger age, addressing unique challenges and concerns relevant to them. 

  • Virtual: Online communities that allow members to share experiences from the comfort of their own home. 

  • In-person: Face-to-face gatherings where people can meet to discuss their experiences. 

Tips for Starting A Support Group 

If you have not found a support group that is the right fit for you, consider starting your own. Explore our Support Group Guide for a step-by-step planning process. The most important part of any support group is to ensure members feel accepted, respected and comfortable when attending the group.  

Building and launching a support group requires planning, organization and attention to detail. The “let’s get started” phase can be overwhelming, but breaking down a big task into smaller tasks can make planning more manageable. Consider these key aspects before launching a support group: 

  1. Who will attend this group? 

This step is crucial for building the foundation of your support group. Make sure you know your audience before you figure out any specific details about the group. You can choose from the types of support groups above to get started.  

  1. Where will the group take place? 

If you decide to start an in-person support group, start looking for a potential meeting space. The location can make or break your group. Rule out locations that are not easily accessible.  

These locations are generally open to hosting support groups: 

  • Public libraries 

  • Hospitals 

  • Community living centers 

  • Places of worship (remember accessibility requirements for older buildings) 

  • Town halls 

  • Senior centers 

  • Senior living facilities or nursing homes 

Each community is unique, so consider what other possibilities could exist in yours. Talk to people and let them know what you are looking for. Let others spread the word to help you secure a solid, consistent location. 

  1. How often will your group meet? 

Many PD support groups meet monthly. Find the frequency that works for your group. Consider that the more often you meet, the faster members can become fatigued, and more planning will be required. Meeting less than once a month can limit the group’s ability to build relationships.  

Having a consistent day of the month (for instance, the second Tuesday of each month) helps people to remember when the group meets. 

An even bigger consideration is time of day — will you meet in the morning, afternoon, or evening? Make the decision that works best for you as a leader and ask potential participants for feedback. Establishing a regular time and place will help your group expand as more people become aware of its existence. 

  1. What is the support group’s format? 

There are many formats you may choose to use for your group. The best advice is to stay flexible. You may start out with a formal meeting agenda and decide that you want to change things up and go less formal. Listen to what your group members tell you!  

To help “break the ice” at the start of each meeting, particularly for new members in attendance, introductions are a great technique. Not only does everyone get a chance to say something, but it also helps members remember names and relationships. 

  1. How long are meetings? 

Support groups usually meet for no more than 90 minutes. It also may be helpful to design a break halfway through for refreshments and a rest room break. Find what works best for the group. 

Parkinson’s Education and Finding Guest Speakers 

Besides planning the basics, it is also important to consider things like topics for each meeting and if you plan to have a guest speaker. One common need for the Parkinson’s community is disease education.  

Guest speakers can include:  

  • Local PD experts you or group members know. 

  • Parkinson’s Foundation volunteer. Email us at Volunteer@Parkinson.org and we can help connect you to someone in your area. 

If you are not sure where to start, ask your group members for suggestions and topic recommendations. 

Promoting Your Group 

Promotion is essential for a successful support group. Word of mouth can help but it is typically not enough. Consider creating a flyer or letter announcing the group, starting date, location and contact person. If you have a speaker scheduled, be sure to include that information and the topic they will be discussing. 

Social media can also be helpful in raising awareness of your new group. It can be especially helpful for reaching younger people with PD and their care partners. Managing a social media page could be a great volunteer role for a group member to take on. 

How To Find A Support Group 

Here are two ways to find a local PD support group: 

  1. Visit our Parkinson’s Foundation Chapter page to search for one in your area. 

  1. Call our Helpline at 1-800-4PD-INFO (1-800-473-4636) or email Helpline@Parkinson.org

For more information on starting a support group, check out our Support Group Guide

Science News

Screening for Depression Can Improve Parkinson’s Care

Science News Blog header

A new study shows that a quick depression questionnaire can improve depression screening among people with Parkinson’s and lead more people to get help for these symptoms.

Parkinson's disease (PD) is typically associated with hallmark movement signs like tremors and stiffness. However, non-movement symptoms like depression often go underdiagnosed and undertreated.

Up to half of all people with Parkinson's experience depression at some point, which can significantly impact their quality of life. Importantly, a large percentage of people with PD never receive treatments or psychotherapy. Which is why improving the screening and treatment of depression in the PD population is an unmet need.

A new study showed that introducing a five-minute questionnaire — the 15-question Geriatric Depression Scale (GDS-15) — to movement disorder clinics can improve the rate of depression screening and follow-up care for people with Parkinson’s.

About the Study & Results

The study, Improving Parkinson's Disease Care through Systematic Screening for Depression, was published in July 2024 in the peer-reviewed scientific journal Movement Disorders. It included five movement disorder clinics in the U.S. and Canada. The clinics used the GDS-15 scale because research has shown it to be effective at detecting depression among people with Parkinson’s and can be self-administered in less than five minutes.

The study utilized data from the Parkinson’s Foundation Parkinson’s Outcomes Project, the largest-ever clinical study of Parkinson’s with more than 13,000 participants in five countries. Before the study, clinics reported that only 12% of people with PD received a formal depression screening, whereas 64% were screened informally and 24% did not receive screening.

During the study, 1,406 people were seen for follow-up care at the movement disorder clinics, and 59% of those people received the GDS-15 screening, while 29% were screened informally — resulting in a five-fold increase in formal depression screening.

Among those who were screened for depression, 45% were positive for depression, showing depression is a common symptom for people with PD. About half of those people were already being treated for depression, but about 12% started new treatment.

When the study began, average GDS-15 scores were 8.8 — just 12 months later, average scores decreased to 7.0 (a GDS-15 score of 5 or above indicates depression). While the cause of the improved GDS-15 scores remains unclear, study authors raise the possibility that the formal depression screening process and follow-up discussions with a doctor may have a positive impact on depression symptoms.

Some centers experienced challenges in implementing the formal depression screening process. The most common reasons include patients having insufficient internet access to fill out the form at home or not enough time for the staff to help fill out the form in-office.

In follow-up interviews with clinicians, nearly all (94.4%) agreed the GDS-15 questionnaire was a useful tool for identifying depression. Moreover, 64.7% reported that the program led to changes in clinical management for at least 25% of patients, suggesting it improved patient care.

Highlights

Doctor explaining reports to patient
  • Introducing a formal depression screening questionnaire — the 15-question Geriatric Depression Scale (GDS-15) — led to a five-fold increase in depression screening among five movement disorder clinics.
  • Among those who were screened with GDS-15, 45% screened positive for depression. While half of those people were already being treated for depression, 12% started new treatment.
  • A GDS-15 score of 5 or above indicates depression. When the study began, average GDS-15 scores were 8.8. Twelve months later, average scores decreased to 7.0.

What does this mean?

Formal screening for depression is one way to improve health care for those with Parkinson’s. The GDS-15 is one way to detect depression among those with Parkinson’s, however, it is not the only way to screen for depression.

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

People with Parkinson’s are at higher risk for depression. However, not every PD doctor or clinic offers depression screenings or asks about mental health. If you experience any signs of depression or sadness, it is important to talk to your doctor.

Just as the symptoms and causes of depression can differ from person to person, so too can suitable treatment approaches. Exercise is a vital component of alleviating depression in PD. Primary treatments also include antidepressant medications and psychological counseling (psychotherapy).

Learn More

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

Back to Top