Episode 175: Reframing Your Thoughts with Mindfulness
Mindfulness is the intentional act of paying attention to one’s body, sensations, thoughts, feelings, or surroundings in the present moment, without judgment. Practicing mindfulness can give a sense of calm, help manage pain, reduce stress, and improve clarity and mental well-being. In being aware of and calmly accepting feelings, thoughts, and bodily sensations in a non-judgmental way, individuals can reshape their thoughts and expectations into something more manageable. For people with Parkinson’s disease (PD), mindfulness is particularly good for reducing anxiety and depression, as well as coping with daily stressors.
In this episode, Crista Ellis, Senior Community Program Manager with the Parkinson’s Foundation and a certified yoga and meditation educator, describes what mindfulness is, how easy it is to practice in a short amount of time, and how it can benefit people with PD. She also leads us through a brief mindfulness practice for listeners to participate in.
Released: January 28, 2025
Crista Rose Ellis is a dedicated yoga instructor, mindfulness teacher, and advocate for holistic wellness. Originally from Ohio and now based in Asheville, North Carolina, Crista holds a degree in Psychology from Miami University of Oxford, Ohio, and has completed 300 hours of yoga teacher training, specializing in Hatha, Vinyasa, Yin, and Restorative styles. She is also certified in mindful meditation and Reiki, weaving these practices into her work with individuals and communities.
Crista’s journey with yoga has been one of curiosity, self-acceptance, and surrender. Through her warm, compassionate teaching style, she creates spaces for others to connect, find balance, and navigate life’s challenges.
In her professional role, Crista has spent nearly a decade serving the Parkinson’s community through the Parkinson’s Foundation. She manages and facilitates international community education programs, empowering individuals impacted by Parkinson’s disease to explore the benefits of yoga and mindfulness. As part of her work, Crista hosts weekly "Mindfulness Monday" meditation sessions through the Foundation’s virtual PD Health @ Home initiative. Her passion is to educate, inspire, and connect communities locally and globally, empowering individuals to embrace holistic well-being.
Empowering Black and African American Communities with Parkinson’s: Education and Advocacy in Action
Black and African American people living with Parkinson’s disease (PD) often face significant health disparities, limiting access care. To bridge this gap, the Parkinson’s Foundation launched Parkinson’s Journey in Color: Advancing Research and Care in Your Community — events tailored to meet the unique needs and experiences of local Black and African American PD communities. Each event offered in-person genetic testing at no cost through the Foundation’s landmark genetics study, PD GENEration: Mapping the Future of Parkinson’s Disease.
A Collaborative Approach Rooted in Community
Part of our mission is to amplify the voices of those living with Parkinson’s. Parkinson’s Journey in Color was designed through a collaboration with Parkinson’s Foundation research advocates and staff. Research advocates are volunteers who complete Parkinson’s Foundation training to help ensure PD research is more efficient and effective.
When it came to Parkinson’s Journey in Color, research advocates helped guide every aspect of the events — from shaping topics to selecting central location. They also identified and worked with community partners to promote and participate in the events, ensuring that the program resonated with local audiences.
“Working alongside advocates who are all people in the PD community, we recognized their unparalleled understanding of their communities and cultural values, allowing us to create an inclusive and empowering event that reaches more people with Parkinson’s,” said Evelyn Stevens, Parkinson's Foundation senior director of community engagement.
The research advocates who helped shape these events were trained in collaboration with Morehouse School of Medicine in September 2023 (learn more in this article). These advocates, who are people living with Parkinson’s and care partners who identify as Black or African American, brought their experiences, insights and cultural expertise to the forefront of Parkinson’s Journey in Color events.
Tailored Programming to Address Community Needs
The Parkinson’s Foundation hosted three Parkinson’s Journey in Color events in 2024.
Atlanta, GA: Our March 9 event was held alongside Morehouse School of Medicine and Emory Brain Health Center. Fifty-five people attended, with most saying it was their first Parkinson’s Foundation event. Ten people completed PD GENEration testing at the event.
Charlotte, NC: Our September 14 event hosted 51 attendees and was held at The Park Church, a recommendation by a research advocate that allowed the Foundation to strengthen its connections with faith-based leaders and trusted sources within the Black and African American community. Attendees shared their experiences with participating in research, including PD GENEration. The event featured a “Connections to Care” table that provided resources for local neurologists and an opportunity to meet with local healthcare professionals experienced in PD.
Chicago, IL: Our November 16 event hosted 45 attendees and was held at the University of Illinois Chicago. Part of its focus was on research and care, with four PD GENEration sites in attendance that provided attendees with information and resources for care and PD GENEration testing. Participants also had the opportunity to meet with movement disorders specialists from Northwestern University, Rush University (both Parkinson’s Foundation Centers of Excellence) alongside University of Chicago and University of Illinois at Chicago.
“Each of our journeys are quite colorful. In Charlotte, one of our church leaders shared with me, ‘who knew so many African American people have a PD diagnosis?’ I shared there are more as well. That's what this advocacy is all about,” said Lisa Fletcher, a care partner and the Parkinson’s Foundation research advocate who suggested partnering with a local church.
Openly Discussing Critical Parkinson’s Topics
While each event featured a customized list of topics, all shared essential PD information including:
Parkinson’s Disease 101: A session led by a movement disorders specialist (a neurologist experienced in PD) who reflected the community’s identity, fostering relatability and trust.
The Importance of Research: A candid discussion that acknowledged the historical mistreatment of the Black and African American community in research while highlighting progress and current safeguards to rebuild trust.
Introduction to PD GENEration: Information on genetic testing and counseling opportunities to empower participants with knowledge and tools for proactive care.
Lived Experience Sharing: Stories and insights from local people living with Parkinson’s and their care partners, providing inspiration and a sense of shared understanding.
The Black Community & Parkinson’s
Black and African American people diagnosed with Parkinson’s have unique experiences and needs when it comes to living with PD. Research shows that Black people with PD are diagnosed at a later disease stage than white people.
Research also shows that Black people are less likely to be diagnosed compared to other racial and ethnic groups. This is in large part due to Black communities being historically excluded in the healthcare system and research studies. Because of this, the full impact of the disease within the community is still unknown.
The Parkinson’s Foundation works to bring awareness to these disparities and more so we can make health care more accessible across the PD community, through reaching and supporting populations of focus, including those who identify as Black and African American. Explore our resources and information that can help you find a specialist, build a care team and find local resources, like support groups and exercise classes.
“Parkinson’s Journey in Color represents more than just an education and care event— it is a testament to the power of community-driven solutions and advocacy,” said Evelyn. “Through centering the voices of Black and African American individuals living with Parkinson’s, we are fostering a more inclusive and equitable approach to care, research and support.”
Through initiatives like this and designing new ones that reach more populations of focus, the Parkinson’s Foundation aims to build stronger connections within local communities, address disparities in care and empower individuals with the knowledge and resources they need to thrive.
Herramientas para abordar las alteraciones del pensamiento y la memoria en la EP
A medida que envejecemos, nuestra habilidad de pensamiento cambia. Los cambios cognitivos también pueden aparecer en la enfermedad de Parkinson (EP), incluyendo pensamiento más lento, olvidos, falta de concentración y, en ocasiones, pérdida de memoria. En este artículo, aprenda estrategias prácticas para reducir el riesgo de alteraciones del pensamiento y mejorar la salud cognitiva y descubra las terapias disponibles para los trastornos cognitivos.
El siguiente artículo se basa en una Charla con expertos de la Parkinson’s Foundation (Expert Briefings) acerca de las alteraciones del pensamiento y la memoria en la EP, con el Dr. Gregory Pontone, médico con maestría en ciencias de la salud, de la Facultad de Medicina de la University of Florida, un Centro de Excelencia de la Parkinson’s Foundation.
Envejecimiento y cognición
Algunos procesos del pensamiento se conservan bien a medida que envejecemos, incluyendo:
El vocabulario y los conocimientos generales.
Las competencias lingüísticas.
Recordar cómo se hacen las cosas, como andar en bicicleta o cocinar pasta (memoria procedimental), el nombre del presidente o de un vecino (memoria semántica).
La capacidad de comprender lo que vemos.
Los cambios en cualquiera de estas capacidades antes de los 70 años podrían estar relacionados con la EP u otra enfermedad asociada al envejecimiento. A medida que una persona se acerca a los 70 años, la edad o el Parkinson pueden influir en:
La capacidad de retener información a corto plazo mientras se concentra en otra tarea (memoria funcional).
Planificar, organizar y realizar tareas (función ejecutiva).
Atención focalizada y dividida.
La rapidez con la que el cerebro comprende y responde a la información.
Reconocer los cambios cognitivos en la EP
Muchas personas con Parkinson pueden experimentar cierto grado de alteraciones del pensamiento. Estos cambios suelen progresar gradualmente junto con los síntomas motores. El deterioro cognitivo leve (DCL o MCI, por sus siglas en inglés) describe alteraciones de la memoria o del pensamiento que no afectan la vida cotidiana. Las personas con la enfermedad de Parkinson de inicio temprano —aquellas que desarrollan síntomas antes de los 50 años— suelen experimentar cambios cognitivos más leves y lentos relacionados con la EP.
En algunas personas con Parkinson, el cambio cognitivo progresivo puede conducir a la demencia de la EP (DEP), un deterioro más grave del pensamiento. A veces, la persona se da cuenta de que su memoria está fallando, pero otras veces son las personas más cercanas quienes reconocen los signos. El deterioro cognitivo en la EP puede afectar:
La realización de tareas, como organizar medicamentos o utilizar un control remoto.
Las habilidades lingüísticas y de búsqueda de palabras, que afectan la capacidad de seguir instrucciones o participar en conversaciones.
La memoria, que hace que la persona repita preguntas, olvide información importante o tenga problemas para aprender información nueva.
El juicio, que lleva a que la persona ignore riesgos o tome malas decisiones.
La orientación de tiempo y lugar; una persona con problemas del pensamiento puede perderse, especialmente en lugares conocidos.
Las dificultades de memoria en la EP vs. la enfermedad de Alzheimer
Los médicos utilizan la Evaluación Cognitiva de Montreal (MoCA, por sus siglas en inglés) como herramienta de detección de alteraciones del pensamiento. Puede distinguir entre tipos de disfunción de la memoria.
El deterioro de la memoria relacionado con la EP difiere de la enfermedad de Alzheimer. Una buena parte de la memoria de reconocimiento —la capacidad de recordar cosas que uno se ha encontrado antes— permanece prácticamente intacta para la mayoría de las personas con Parkinson. Las personas con Parkinson pueden tener un poco de dificultad para buscar y recuperar un recuerdo, pero con una pista o tiempo suficiente, pueden recordarlo. Por lo general, una persona con Alzheimer es incapaz de crear o recuperar nuevos recuerdos.
La demencia por la EP, la demencia con cuerpos de Lewy y la enfermedad de Alzheimer están asociadas a proteínas plegadas anormalmente que forman grumos pegajosos que dañan la salud cerebral. Los cuerpos de Lewy son cúmulos tóxicos de proteína alfa-sinucleína que se acumulan en el cerebro.
Un fallo de la memoria al principio de la EP o un fallo similar al del Alzheimer podrían indicar que la persona con Parkinson también podría tener Alzheimer.
Posibles descubrimientos
Una comprensión más profunda del complejo funcionamiento de la EP puede mejorar el tratamiento y la atención. Actualmente, los investigadores pueden ver los cúmulos tóxicos asociados a los problemas de memoria mediante técnicas de imagenología. Los científicos confían en que los avances tecnológicos pronto permitan examinar más de cerca la proteína alfa-sinucleína mal plegada.
La terapia de infusión de anticuerpos puede eliminar el amiloide del cerebro de las personas con la enfermedad de Alzheimer en fase inicial. La esperanza es que las infusiones ralenticen la progresión de la enfermedad. Las futuras terapias para el Parkinson podrían inhibir el mal plegamiento de la proteína alfa-sinucleína para minimizar la formación de cuerpos de Lewy o, posiblemente, incluso eliminar la alfa-sinucleína anormal.
Los beneficios del ejercicio aeróbico en el Parkinson son poderosos. Ya sea que nade, camine o haga otro ejercicio de intensidad moderada, hacer ejercicio 150 minutos por semana puede mejorar la estabilidad y el equilibrio, disminuir el riesgo de caídas, reducir la depresión y beneficiar directamente la cognición en la EP, mejorando:
La atención
La velocidad de procesamiento
El tiempo de reacción
La función ejecutiva
El lenguaje
El entrenamiento de resistencia —utilizando el peso corporal, pesas o ligas— también puede ser beneficioso para la cognición, el equilibrio, la marcha y la densidad ósea, al tiempo que reduce el riesgo de fracturas en la EP. El entrenamiento de resistencia también mejora la función ejecutiva y la atención.
2. Practique la atención plena.
Un estudio de 2004 observó cómo 20 personas con Parkinson de leve a moderado y 10 personas que no tenían la EP realizaban una tarea a medida que se añadían grados de complejidad.
Los investigadores descubrieron que, mientras que el aumento de la atención requerida contribuía a las alteraciones del desempeño y de la marcha en todos los participantes, las personas con Parkinson se volvían aún más lentas. Practicar la atención plena, centrarse en una sola cosa a la vez y bloquear las distracciones, puede ayudarle a funcionar de forma óptima con Parkinson.
3. Siga una dieta nutritiva.
La dieta MIND (Mediterranean-DASH Intervention for Neurodegenerative Delay), una combinación de la dieta mediterránea y DASH (método dietético para detener la hipertensión, por sus siglas en inglés) para retrasar la degeneración neuronal, es una dieta basada en evidencia para la salud neurológica.
Las recomendaciones incluyen comer:
Al menos 3 raciones de cereales integrales al día.
Una ración diaria mínima de una ensalada de hojas verde oscuro y una ración de verduras.
Al menos 30 gramos de frutos secos al día.
Frijoles o legumbres al menos cada dos días.
Bayas (berries) al menos dos veces por semana.
Aves de corral al menos dos veces por semana.
Pescado al menos una vez a la semana.
Y limitar:
Mantequilla o margarina a no más de una cucharada sopera al día (utilice en su lugar aceite de oliva).
Queso, alimentos fritos o comida rápida a no más de una vez por semana.
Bollería o dulces a menos de cinco veces por semana.
4. Duerma lo suficiente.
El sueño de calidad desempeña un papel en la creación y recuperación de recuerdos y puede eliminar algunas de las proteínas anormales asociadas a la pérdida de memoria. También ayuda al cuerpo a reflejar los beneficios del ejercicio.
Los cambios y síntomas cerebrales relacionados con la EP pueden alterar el sueño. Practicar conductas que lo pongan en el estado óptimo para relajarse puede ayudarle a conciliar el sueño y a permanecer dormido. Una rutina de sueño saludable incluye:
Un horario regular para dormir y despertar (intente reservar al menos 8 horas)
Un dormitorio tranquilo y en penumbra
Tiempo de pantalla mínimo
Hable con su médico acerca de problemas de sueño o inquietudes al respecto. Pueden trabajar en conjunto para encontrar las mejores herramientas para tratar sus síntomas.
5. Manténgase conectado socialmente.
Encontrar y establecer relaciones sociales saludables beneficia al cerebro y al cuerpo. Busque recursos comunitarios como punto de partida; por ejemplo, clases de ejercicio, actividades artísticas, grupos de apoyo u oportunidades de voluntariado. Las visitas a domicilio, las llamadas telefónicas o los programas en línea pueden beneficiar a quienes tienen dificultades para salir.
El aislamiento social y la soledad pueden ser peligrosos.
El aislamiento social se asocia a un aumento de 50% del riesgo de demencia y aumenta significativamente el riesgo de muerte prematura, a niveles de los riesgos del tabaquismo, la obesidad y la inactividad física.
Las investigaciones demuestran que el aislamiento aumenta el riesgo de cardiopatías y accidentes cerebrovasculares en torno a un 30%.
La soledad puede aumentar la ansiedad, la depresión, la confusión, las delusiones, los problemas de memoria y comunicación y puede afectar la capacidad para resolver problemas. El aislamiento también aumenta la tensión del cuidador, que puede llevar al agotamiento.
6. Explore el tratamiento.
Su médico puede recomendarle que trabaje con un neuropsicólogo o un terapeuta del habla y el lenguaje especialmente preparados, que pueden ofrecerle formas de compensar los problemas de memoria o pensamiento.
Algunos medicamentos recetados también pueden mejorar los síntomas de la demencia por la EP. Los inhibidores de la acetilcolinesterasa potencian la acetilcolina (una sustancia química importante para la memoria entre otras cosas) en el cerebro. Entre ellos se encuentran la rivastigmina (el único medicamento para la PEP aprobado por la FDA), el donepezilo y la galantamina.
La memantina es un medicamento que protege al cerebro de los niveles excesivos de una sustancia química llamada glutamato. A veces se utiliza en combinación con inhibidores de la acetilcolinesterasa.
As we age, our thinking abilities change. Cognitive changes can also occur in Parkinson's disease (PD), including slower thinking, forgetfulness, lack of focus and sometimes, memory loss. In this article, learn practical strategies to lower the risk of thinking changes, improve cognitive health and discover available therapies for cognitive disorders.
The following article is based on a Parkinson’s Foundation Expert Briefing about thinking and memory changes in Parkinson’s, hosted by Dr. Gregory Pontone, MD, MHS, University of Florida Center for Movement Disorders and Neurorestoration, a Parkinson’s Foundation Center of Excellence.
Aging and Cognition
Some thinking processes are well-preserved as we age, including:
vocabulary and general knowledge.
language skills.
remembering how to do things, like ride a bike or cook pasta (procedural memory), the name of the president or your neighbor (semantic memory).
the ability to grasp what we see.
Changes in any of these abilities prior to age 70 could be related to Parkinson’s or another aging-associated disease. As someone moves into and beyond their 70s, age and/or Parkinson’s might impact:
the ability to hold onto information short-term while focusing on another task (working memory).
planning, organizing and accomplishing tasks (executive function).
focused and divided attention.
how fast the brain understands and responds to information.
Recognizing Cognitive Change in PD
Some degree of thinking changes can affect many people with Parkinson’s. These changes tend to progress gradually alongside movement symptoms. People with young-onset Parkinson’s disease — those who develop symptoms before age 50 — often experience milder, slower cognitive change related to PD.
Mild cognitive impairment (MCI) describes memory or thinking changes that do not impact daily life.
In some people with Parkinson’s, progressive cognitive change can lead to PD dementia (PDD), a more severe decline in thinking. Sometimes a person has insight that their memory is failing, but other times, it is the people closest to them who recognize the signs. Cognitive impairment in PD can affect:
Task performance, such as organizing medications or using a remote control.
Word-finding and language abilities, impacting the ability to follow directions or participate in conversations.
Memory, causing a person to repeat questions, forget important information or have trouble learning new information.
Judgement, leading someone to ignore risks or to make bad decisions.
Orientation with time and place; a person with impaired thinking may get lost, especially in familiar places.
Memory Difficulty in PD vs. Alzheimer’s Disease
Doctors use the Montreal Cognitive Assessment (MoCA) as a screening tool for thinking changes. It can distinguish between types of memory dysfunction.
Memory impairment related to Parkinson's differs from Alzheimer's disease. A good portion of recognition memory — the skill of recalling things you have come across before — remains largely intact for most people with Parkinson's. Someone with Parkinson’s may have a little difficulty searching for and retrieving a memory but, with a hint or enough time, can remember. A person with Alzheimer's is generally unable to make or retrieve new memories.
Parkinson’s, PD dementia, dementia with Lewy bodies and Alzheimer's disease are associated with abnormally folded proteins that form sticky clumps which damage brain health. Lewy bodies are toxic clusters of alpha-synuclein protein that build up in the brain.
Memory failing early in the course of PD or failing in a way similar to Alzheimer's could indicate a person with Parkinson's might also have Alzheimer's.
Potential Breakthroughs
Gaining a deeper understanding of the complex workings behind PD can improve treatment and care. Researchers are now able to visualize the toxic clumps associated with memory issues through imaging techniques. Scientists are hopeful meaningful advances in technology will soon allow closer examination of misfolded alpha-synuclein protein.
Antibody infusion therapy can remove amyloid from the brain of people with early Alzheimer's disease. The hope is that infusions will slow down disease progression. Future Parkinson’s therapies could inhibit the misfolding of alpha-synuclein proteins to minimize Lewy body formation or possibly even remove abnormal alpha synuclein.
Tools to Improve Cognition Today
As you navigate Parkinson’s stages and symptoms, the pursuit of wellness can have a profound impact.
1. Get moving
The benefits of aerobic exercise in Parkinson’s are powerful. Whether swimming, walking or doing another moderate intensity workout, exercising 150 minutes each week can enhance stability and balance, decrease the risk of falls, reduce depression and directly benefit cognition in PD, improving:
attention
processing speed
reaction time
executive function
language
Resistance training — using bodyweight, weights or bands — can also benefit cognition, balance, gait and bone density, while reducing the risk of fractures in PD. Resistance training also improves executive function and attention.
2. Practice mindfulness
A 2004 study looked at how 20 people with mild to moderate Parkinson's and 10 people who didn't have PD performed a task as layers of complexity were added.
Researchers discovered that while increasing demands on attention contributed to performance and gait disturbances across all participants, the people who had Parkinson's slowed down even more. Practicing mindfulness, focusing on one thing at a time and blocking out distractions, can help you function optimally with Parkinson’s.
3. Eat a nourishing diet
The MIND diet (Mediterranean-DASH Intervention for Neurodegenerative Delay), a combination of the Mediterranean diet and DASH (Dietary Approaches to Stop Hypertension), is an evidence-based diet for neurological health. Recommendations include eating:
at least 3 portions of whole grains daily.
a minimum daily serving of one dark, leafy green salad and one serving of vegetables.
at least 30 grams of nuts daily.
beans or legumes at least every other day.
berries at least twice a week.
poultry at least twice a week.
fish at least once a week.
And limiting:
butter or margarine to no more than a tablespoon a day (use olive oil instead).
cheese, fried or fast food to no more than once a week.
pastries or sweets to less than five times a week.
4. Get good sleep
Quality sleep plays a role in making and recalling memories and may also remove some of the abnormal proteins associated with memory loss. It also helps the body realize the gains of exercise.
Parkinson’s-related brain changes and symptoms can disrupt slumber. Practicing behaviors that get you in the optimal state to relax can help you fall asleep and stay asleep. A healthy sleep routine includes:
a regular sleep-wake schedule (try to set aside at least 8 hours).
a quiet, dim bedroom.
minimal screen time.
Talk to your doctor about sleep issues or concerns. You can work together to find the best tools to address your symptoms.
5. Stay socially connected
Finding and building healthy social relationships benefits the brain and body. Look to community resources for a starting point, including local exercise classes, art activities, support groups or volunteer opportunities. In-home visits, phone calls or online programs can benefit those who have difficulty getting out.
Social isolation is associated with a 50% increased risk of dementia, and significantly increases the risk of premature death, rivaling the risks of smoking, obesity and physical inactivity.
Research shows isolation increases the risk of heart disease and stroke by about 30%.
Loneliness can increase anxiety, depression, confusion, delusions, memory and communication problems and can impact problem-solving skills. Isolation also increases care partner strain, which can lead to burnout.
6. Explore treatment
Your doctor may recommend you work with a specially trained neuropsychologist or speech-language pathologist who can offer ways to compensate for memory or thinking problems.
Some prescription medications can also improve symptoms of PD dementia. Acetylcholinesterase inhibitors boost acetylcholine (a chemical important for memory and more) in the brain. These include rivastigmine (the only FDA-approved PDD medication), donepezil and galantamine.
Memantine is a medication that protects the brain from excess levels of a chemical called glutamate. It is sometimes used in combination with acetylcholinesterase inhibitors.
Expert Briefing: What's on Your Mind? Thinking & Memory Changes
November 13, 2024
Cognitive changes, including slowness in thinking, decreased attention span and difficulty finding words, can often occur in Parkinson’s disease. These changes, along with memory loss, can be frustrating and challenging for the person with Parkinson’s and those close to them. This webinar will review the cognitive and memory changes in Parkinson’s as well as practical strategies to help with daily activities.
Greg Pontone, MD, MHS
The Louis and Roberta Fixel Chair
Division Chief, Aging, Behavioral, and Cognitive Neurology
Co-Director of the Fixel Neuropsychiatry Program
University of Florida College of Medicine
Professor, Department of Neurology
My PD Story
People with PD
James Higgins
Since I've had Parkinson's disease (PD), I've learned that there's not enough research going on within the black community for people with Parkinson's. Simply put, we’re different, our genes are different. Our genetic make-up is unique compared to white people and other backgrounds. Which is why I signed up for the Parkinson’s Foundation genetics study, PD GENEration.
I signed up for PD GENEration at Rush University Medical Center, a Parkinson’s Foundation Center of Excellence. Participating was simple. I went to Rush, where Stacy took some blood. We got four tubes of blood. Two of them went to the Parkinson's Foundation where their PD GENEration lab will complete the genetic testing specific to Parkinson's. The other two tubes go to the NIH where they're doing a study to better understand what Parkinson's and genetics looks like. I asked Stacy if I would walk the blood samples to the lab with her, where we submitted them together.
I find it exciting that the PD GENEration study looks at genes from black folks and compares them to genes of all other races, and that researchers will use this information to see if we can find out what particular genes affect us. Ultimately, this study help us all try to deal with the Parkinson's a little bit better.
I signed up for PD GENEration because I want people living with Parkinson's, and those who know somebody with Parkinson's, to know that you can participate in research. Participating in research can help us see what's going on with ourselves. We're just trying to make life better for the folks with Parkinson’s that come after us.
We don't expect to solve the issue of Parkinson’s right away, but we do expect to get enough research underway that involves us — this research is for us.
A genetics counselor will call me to discuss my genetics test results. They’re going to let me know what they discovered in that test. I’m looking forward to completing the PD GENEration life cycle as I continue to fight this disease.
Every year, Parkinson’s Foundation Helpline specialists receive calls from people with Parkinson’s disease (PD) and their loved ones looking for advice when it comes to navigating the holidays. So, we put our specialists’ top recommendations in this article.
From not knowing how to explain PD to grandchildren, to feeling insecure that family will notice worsening symptoms and the exhaustion that can accompany travel, the holidays can be overwhelming. By thinking ahead about possible stressors, this article is designed to help you plan and prepare to enjoy your holiday season while best managing PD symptoms.
1. Preparing to see family you haven’t seen in a while.
The holidays can be a time when extended family gets together. What if your symptoms have changed since the last time you saw these family members?
Before you see family consider providing them a primer to Parkinson’s — sending them a link in the family chat or email to our What is Parkinson’s page. Early on in your holiday get-together, consider speaking about Parkinson’s for a few minutes to help them understand how you are doing, establishing expectations and setting limits on what works for you.
It can be helpful to come up with a few short sentence scripts prior to these meetings. That way you can practice what you want to say and get the most important information across. An example could be, “Since last seeing you my Parkinson’s symptoms have picked up. My hand shakes more and I walk a little slower. Taking my medicine on time helps me feel my best. Unless I ask for extra help, please treat me as you would anyone else.”
2. Managing Parkinson’s medications when traveling.
What should you know about traveling with Parkinson’s medications?
Carry all medications in their original bottles, with the name of the drug and your doctor’s name on the label.
Continue to take medications on time, every time, even if changing time zones
Bring a copy of your prescriptions (generic and non-generic names) and medication regimen, including your physician’s name and contact information. This printable medication schedule can help.
Keep all your medications, for your entire trip, with you in your carry-on bag; include snacks, water or juice to take with medications.
If possible, pack extra medication in case you are delayed.
Set timers to help you remember to take your medication.
Consider bringing or printing a Hospital Safety Guide with you when traveling. If you do not have one, order or download the guide and its printable components online in the planning stage of your trip.
How can you make traveling with Parkinson’s easier? Whether you’re driving, flying or taking that dream cruise this holiday season, we’ve gathered helpful tips in our Traveling with Parkinson’s below. Read this refresher to help you prepare for all aspects of your upcoming trip.
General travel tips:
Plan to rest the day before your trip and the day you arrive.
Add a name label to assistive equipment, such as a walker, cane or walking stick, before packing.
Give yourself extra time for everything.
Days before a flight, request wheelchair or electric cart service within terminals if necessary. Your bags will be handled too.
For cruises and theme parks, call ahead to rent assistive devices, such as a scooter.
For hotels, call ahead to request an accessible room, or a room near the elevator.
Don’t be afraid to ask for help.
Stick to your routine. It’s easy to get caught up in the excitement of the holidays but try to keep to your daily routine. Follow your usual medication times, mealtimes, exercise routine and sleep schedule.
4. Talking to children and grandchildren about Parkinson’s.
Drawing on the experiences of many PD families, children and grandchildren can have a wide-swinging variety feelings about their parent or grandparent having Parkinson’s. The information you choose to share will likely change as they mature and are able to understand more aspects of Parkinson’s.
The good news is that children often adjust well to a loved one’s diagnosis of PD. Giving children a better understanding of Parkinson's can lessen their fear and anxiety about the disease. When you see children at a family gathering, consider:
Talking to them for a few minutes, providing them with general information about Parkinson’s. For instance, you can share that Parkinson’s is a disease that makes it harder for your body to move, and they notice your symptoms. Share what you do to manage them.
Using language that is understandable and concrete to your child.
Finding a way to allow the child to help and be involved. For instance, they can get you water, help you exercise your brain by playing a game or go on a walk with you.
5. Protect your mental health — and move your body.
Depression and anxiety can be symptoms of Parkinson’s. Prioritize and protect your mental health when traveling. That means taking time for yourself. Rest, read, take your grandchild to the movies, visit a local coffee shop — whatever helps you wind down.
It’s not easy to exercise when traveling but try to stick to your exercise routine as best as possible. Exercise is essential to managing Parkinson’s symptoms and mental health. Keep moving during the holidays. Whether it’s a short walk after a meal or asking your favorite family member to join you for a Fitness Friday on-demand virtual exercise class, staying active can help ease stiffness and improve your mood.
Exercise and movement can be great for the whole family especially during the holidays! Consider including your family in your exercise routine. Ask your grandkids to go on a walk with you, sign the family up for a boxing class or schedule a time for a virtual exercise class with all family members that are interested.
About 75% of people with Parkinson’s experience changes in speech and voice. People with Parkinson’s might struggle in a big group discussion, with following along, being heard or needing extra time to answer.
Tips to help you communicate with your family:
Drink plenty of water or other liquids each day (non-caffeine and non-alcoholic).
Do not strain your voice by shouting over loud noise when you talk.
Rest your voice when it is tired. Like other muscles in your body, the muscles controlling your speech need a break sometimes.
Reduce throat clearing or coughing.
Tips for family and friends:
Have important or more challenging conversations when the person with PD is well-rested and at their ‘best’ time of day.
Minimize talking ‘for’ the person with PD or filling in their responses unless they ask you to do so.
Reduce background noise when having a conversation. Turn off the radio and TV and shut doors to noisy areas.
Be aware that people with PD may not accurately express their emotions through facial expressions because of facial masking.
Be patient. Allow ample time for the person with PD to communicate.
Finally, don’t hesitate to ask for help. Whether it’s asking a family member to go on a pharmacy run for you, letting someone make your tea or calling a friend from your support group to simply confide in someone about how you’re feeling — your support system is there to help lighten the load.
Learn More: Call the Parkinson's Foundation Helpline 1-800-4PD-INFO (1-800-473-4636) and explore our Resources and Support page.
20 regalos adecuados para una persona con Parkinson
¿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.
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.
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
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.”
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.
