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Tools to Tackle Thinking and Memory Changes in PD

Women sitting on couch in pain

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 and loneliness can be dangerous.  

  • 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.  

Explore More Resources

Videos & Webinars

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.

Download Slides

Additional Resources

Presenter

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

James Higgins Headshot
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.  

Tips for Daily Living

Your Guide to the Holidays with Parkinson’s

Younger woman helping older woman decorate Christmas tree.

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.” 

Articles to share with family members: 10 Ways to Support a Loved One with Parkinson’s, What is Parkinson’s

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. 

Learn More: Episode 136: Traveling with Parkinson’s Disease 

3. Parkinson’s Travel Tips 

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.  

Learn More: Traveling with Parkinson's 

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.  

Learn More: Parkinson's Q&A: How do I talk to my children about Parkinson's? 

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. 

Learn More: Mindfulness Mondays guided meditation videos and Fitness Friday exercise videos

6. Setting up better two-way communication.  

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. 

Additional resources: Alleviating Voice Challenges with PD and What Can I Do to Improve My Speech and Communication? 

7. Ask for help when you need it.  

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

6 tips to navigating the holidays with PD
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 

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