Explorando terapias complementarias para el Parkinson: los beneficios de la terapia física, del habla y ocupacional Regístrese Aquí
¡Acompáñenos en una charla en línea donde profundizamos en el mundo de las terapias complementarias y su papel fundamental en mejorar la calidad de vida de las personas que viven con la enfermedad de Parkinson!
Esta sesión interactiva se centrará en la importancia de la fisioterapia, la terapia del habla y la terapia ocupacional, brindando una comprensión integral de sus roles y los numerosos beneficios que ofrecen. No se pierda la oportunidad de participar en demostraciones en vivo de ejercicios terapéuticos diseñados específicamente para pacientes con Parkinson.
Presentadoras
Ana Sanchez Junkin, PT, DPT, NCS
Especialista clínica en neurología certificada
Profesora adjunta
MGH Institute of Health Professions
Dora Jasso, MA, CCC-SLP, CBIS
Patóloga del habla y el lenguaje
MountainView Regional Medical Center
Pamela Talero Cabrejo, OTD, BSOT(Col), OTR/L, CPAM, COT
Profesora adjunta
Programa post-profesional de terapia ocupacional
Departamento de terapia ocupacional
Jefferson College of Rehabilitation Sciences
Thomas Jefferson University
Avances en el tratamiento del Parkinson: ¿Qué hay de nuevo? Regístrese Aquí
Existen muchos medicamentos para mejorar la calidad de vida de las personas con la enfermedad de Parkinson (EP). Sin embargo, cada individuo responde de manera diferente a los medicamentos. Lo que funciona para uno no necesariamente funciona para otro.
Conozca los avances en los tratamientos para la enfermedad de Parkinson, tanto para los síntomas motores como no motores y dónde nos encontramos en el camino hacia la medicina personalizada.
Presentador
Ramon Rodriguez, MD, FAAN
Especialista en neurología
Neurology One
EP Salud En Casa es presentado por Light of Day Foundation, cuya generosidad ha hecho posible esta programación.
Raise Awareness
11 Goals You Helped Us Accomplish in 2023
In a word, momentum was the theme for the Parkinson’s Foundation in 2023. Thanks to the Parkinson’s community, especially our donors, we worked hard to make life better for people with Parkinson’s disease (PD) through advancing research and prioritizing access to care.
Here are 11 ways you helped us keep the momentum in 2023:
In July 2023, we published a study that found that only 50% of people with Parkinson’s saw a general neurologist. As a result of these findings, we are expanding disease-specific training to neurologists and other healthcare providers, and pursuing ways to improve access to care across all demographic and population groups.
2. Provided Genetic Testing and Counseling to 11,000 people with PD
In 2023, our international genetics study PD GENEration: Mapping The Future of Parkinson’s Disease reached the milestone of providing genetic testing and counseling to 11,000 people with Parkinson’s. PD GENEration test results empower people, help them work alongside their doctor to tailor PD treatment, and can match them to gene-specific clinical trials. Thus far, PD GENEration data shows that 12.7% of people with Parkinson’s have a genetic link to the disease — much higher than the originally believed 5-10%.
To bring specialized Parkinson’s care to more people, we designate medical centers that know how to treat this complicated disease. In 2023, we designated eight new centers as part of our Global Care Network, with the first-ever designations in Wisconsin and Washington, and the country of Japan.
The Parkinson’s Virtual Biotech, a partnership with the Parkinson’s UK, is currently funding 13 potential medications in development that either address PD symptoms or aim to slow, stop, or prevent the disease altogether. This initiative gets us closer to delivering life-changing treatments in years, not decades.
A Parkinson’s breakthrough can happen at any time, in any lab, which is why we directly fund scientists who are conducting innovative studies attacking Parkinson’s from every angle. In 2023, we awarded $2.8 million across 30 promising research grants.
Dr. Wang is exploring a new way to target the cause of PD by using RNA-degrading technology. His lab is working to prevent over-accumulation of alpha-synuclein (a protein) in the brain, hopefully paving the way to halt the development of the disease.
Ensuring diversity and inclusivity in Parkinson’s research is critical to accelerating breakthroughs toward a cure. In 2023, we partnered with Morehouse Healthcare to expand genetic research in the Black community, making Morehouse the first historically Black institution of medicine to become a PD GENEration research site.
We awarded nearly $1 million in community grants to PD programs across 35 states. From non-contact boxing classes to educational events and wellness programs, we have invested more than $10.4 million in 787 community-based programs since 2011.
Even though 90,000 Americans are diagnosed with Parkinson’s every year, most healthcare professionals — including nurses, pharmacists and general practitioners — do not receive in-depth PD care training. We added new accredited online courses to our Education Series for Community Providers, which are designed to improve treatment and outcomes for people with Parkinson’s.
We launched 50 new Spanish pages on Parkinson.org. From symptoms to managing PD, these pages are designed to reach the Spanish-speaking Parkinson’s community and connect them to key information and tools.
10. Raised $3.5 million through Parkinson’s Champions
Parkinson’s Champions are a dedicated group of people in the PD community who fundraise to help us fight Parkinson’s. Parkinson’s Champions do it all, they run in prestigious races, cycle for Parkinson’s Revolution, host Facebook fundraisers, and more. In 2023, Parkinson’s Champions raised $3.5 million to propel us towards a cure.
Photo credit: Tricia Baron
On April 11, the producing team behind the Broadway hit, A Beautiful Noise: The Neil Diamond Musical presented $500,000 to the Parkinson’s Foundation in honor of legendary singer, songwriter and performer Neil Diamond, who is living with Parkinson’s.
Every year, the top neurologists and Parkinson’s experts in the world attend renowned conferences to share new information about PD treatments and research. In 2023, the Parkinson’s Foundation shared numerous research and care findings at two premier conferences.
As much as we accomplished in 2023, we are committed to doing more for the PD community in 2024. Your continued support is the only way we can make that happen. Thank you.
The Hospital Safety Guide is a resource for people with Parkinson's disease (PD) and their care partners filled with useful tools and information to prepare for and navigate a hospital stay.
Why is hospital safety important for people with Parkinson’s? People with PD are at a higher risk of hospitalization and face many challenges while in the hospital. Hospital staff may not be familiar enough with PD to understand symptoms or realize they can worsen when PD medication is not delivered on time. Careful preparation and clear communication can help minimize complications and recovery time.
The Hospital Safety Guide provides useful information and tools to help you advocate for your best care, including:
The Five Parkinson’s Care Needs
Forms to fill out with personal care details and medication schedules
Tips for care partners
Parkinson’s care information to share with the hospital care team
The Importance of Openly Talking About Hallucinations & Delusions in Parkinson’s
Psychosis can be a frightening word. Understanding what it means in Parkinson’s disease (PD) and how a person may experience symptoms can ease the fear and stigma surrounding this medical term. Hallucinations and delusions can be common in PD. Openly discussing these symptoms can help your healthcare team discover the best management strategies. Learn the different ways people experience these symptoms and how to address them.
If you live with Parkinson’s, some of your most challenging symptoms might be seemingly invisible to others. Known as non-movement symptoms, these can impact mood, sleep, thinking and more. Some are easier to talk about than others.
Not everyone with PD will have hallucinations or delusions, but up to 50% of people with Parkinson's can experience symptoms over the course of the disease. Studies show up to 90% of people do not proactively talk to their doctor about it, meaning the actual number may be higher.
It’s important to know that you are not alone. If you feel, hear or sense things that aren’t there, you may feel self-conscious, embarrassed or even scared to share your experiences. These feelings may lead to isolation and avoidance of care. While it can take courage to talk about your experience, rely on your doctor, neurologist or movement disorders specialist to be familiar with these symptoms.
In Parkinson’s, your doctor might use the term psychosis to describe anything from visual hallucinations caused by slight misperceptions to complex, detailed delusions: seeing things that aren't there or believing things that are not true. These tricks of the brain can seem like minor inconveniences, but often have a big impact on you and your loved ones. These symptoms can stem from Parkinson’s brain changes, medication, dementia or delirium — sudden hallucinations or delusions that can signal a medication or health issue.
Unaddressed, hallucinations and delusions can reduce quality of life for people with Parkinson's and their care partners. These can cause lack of sleep, increase stress and create fall risks or other safety issues. Symptoms can also increase hospitalization risk, care costs and need for long-term care.
Other medical conditions that can cause psychosis include:
Bipolar disorder
Brain tumor
Depression
Dementia
Lupus
Malignant lung neoplasm
Multiple sclerosis
Schizophrenia
Steroid treatment in autoimmune disorders
Stroke
Gradual Changes in Perception
Symptoms of Parkinson’s disease psychosis vary in severity. In early PD stages, you may be aware that what you are experiencing is not really there. You might lose that insight as Parkinson’s progresses. This happens slowly and gradually over time.
Psychosis symptoms can include:
Illusions or misperceptions: Misperceiving what is there — for example, a coat and hat on a rack might appear to be a person or a shadow may appear to be a mouse.
False sense of presence: The sense that someone is looking over your shoulder, in the room or lying next to you in bed, but when you look, no one is there.
False sense of something moving past: The awareness of something fleeting past or moving in the periphery, or sense something darting across the floor or someone walking through the hallway.
Hallucinations and delusions: Seeing or believing things that are not true, which can cause a range of feelings from undisturbed or anxious to agitated or frightened.
Types of Hallucinations
Some hallucinations recur with frequency, while others happen just once. Hallucinations are more common in people with sleep or cognitive problems or depression. While increasing medications can sometimes put people at risk for the onset of hallucinations, most people with Parkinson's will experience hallucinations after 10 years of diagnosis.
Hallucinations are less likely to occur when someone is engaged in an activity. They are more likely to happen when a person has vision problems, is alone or at night. Understanding how people with Parkinson's might experience these can help reduce the stigma.
Types of hallucinations include:
Visual: Seeing people or animals that are living or deceased.
Auditory: Hearing things like voices or music.
Olfactory: Smelling things that aren’t there, such as chemicals burning or gasoline.
Tactile: Feeling as if something is on or underneath the skin, which might cause scratching.
Visual hallucinations can seem as if you are having a vivid dream, despite knowing you are awake — seeing distorted, cartoon-like strangely colored animals and people, bugs, figures hovering on the ground. People have reported seeing fairies or colonies of tiny people. Some people find these entertaining to watch, while others find it frightening.
Common visual hallucinations for people with PD can include:
Seeing someone sitting in your home, possibly in your living room or at your dining table. It can range from a friendly presence like a visitor or to the distressing sense of an intruder.
Some veterans with PD have reported seeing elaborate, detailed military bootcamps outside, with a drill sergeant and service members.
People in cities and urban areas may see out-of-place wildlife, such as deer or skunks.
Auditory hallucinations can cause distraction or poor sleep. People may think neighbors are doing yard work or having a party in the middle of the night. Sounds may seem to come from the attic, basement or walls.
Understanding Delusions
Delusions can distress the person with Parkinson's and their loved ones, sometimes causing isolation, embarrassment, fear, suspicion or jealousy, or resulting in anger or violence toward a care partner. Delusions can create safety or legal problems. Care partners, who may recognize psychosis symptoms before the person with PD, should share these with their loved one’s doctor.
Though delusions are not reality based, they often seem real to the person experiencing them. These often have common themes, including:
Persecution: Believing someone is trying to deceive or bring harm. You may suspect a trusted person wants to steal from you or family is plotting against you. Some people suspect their caregiver is trying to poison them and become suspicious of medication or food.
Jealousy: Believing a spouse or partner is being unfaithful. Othello syndrome is the false certainty of and preoccupation with a partner’s imagined infidelity.
Reference: Feeling like a song or a TV show is speaking directly to you. This may feel like something you want to act on.
Other forms can include:
Fregoli delusion: Believing different people are actually a single person changing their appearance or in disguise.
Cotard’s syndrome: Thinking you are dead, decaying, do not really exist or your blood or internal organs are missing.
Capgras syndrome: Believing an identical imposter has replaced a friend, spouse, family member or pet.
Delirium
Seek medical attention if you experience a sudden change as they are not typical of Parkinson’s. When hallucinations or delusions begin within hours or days, it can be due to changing, stopping, increasing or decreasing a medication, or can signal another medical issue, such as:
urinary tract infection or pneumonia
dehydration
substance withdrawal
high or low blood sugar
low blood pressure
surgery or hospitalization
organ failure
Managing the Impact
There are several ways to help a loved one experiencing PD psychosis. Find the best methods that work for you. These techniques can help manage the impact:
A stable, calm, familiar environment is essential for someone experiencing psychosis.
Keep a routine.
Try to keep a well-lit, clutter-free home — this can minimize visual misperception, hallucinations and injuries.
Use a nightlight in the bedroom. Unfamiliar environments might worsen symptoms.
Offer reassurance that the person with PD is safe, loved and symptoms are not their fault. This can the reduce fear and shame around hallucinations and delusions.
During an episode, do not argue or rationalize. Leave the room if necessary.
Orient your loved one with calendars, photos or messages on post-its.
Remove items that may cause a safety issue, such as area rugs. Explore our home safety page for more.
Focusing on good sleep habits, getting enough exercise and seeking out stress management strategies are vital for people experiencing hallucinations and delusions and those who care for them. Care partners also need adequate rest and breaks from care to burnout risk.
Your doctor can recommend safe management strategies or adjust your medications. Many antipsychotic medications used to treat psychosis should not be used in PD — they can act on dopamine receptors and worsen Parkinson’s symptoms.
While not for everyone, Pimavanserin (Nuplazid®) is a newer antipsychotic that does not block dopamine. It is approved by the U.S. Food and Drug Administration (FDA) specifically for the treatment of Parkinson's disease psychosis. Other medications considered safe options to treat psychosis in PD include Quetiapine (Seroquel®) and Clozapine (Clozaril®). Learn more about medications used to treat psychosis.
Learn More
Explore our resources about hallucinations and delusions in Parkinson’s:
The Parkinson's Foundation is an official charity partner for the 2027 Walt Disney World Marathon Weekend. By signing up to run as a Parkinson's Champion, you commit to raising funds and awareness for the Parkinson's Foundation. In return, you get access to an entry (bib) to the race in addition to perks and benefits. Register to run now at PDChampionsDisneyWorld.org.
Still need to book your Disney trip but not sure where to start? Maggie Cattle with Spirit of Adventure Travelspecializes in Disney destinations and can help take the stress out of planning. She’s also passionate about the Parkinson’s community. Her father was diagnosed with PD in 2020, the same month her husband began working at the Parkinson’s Foundation. Email Maggie to inquire & book!
Detecting Early Parkinson’s with a Wearable Movement-Tracking Device
According to a new study, data from smart devices may be able to detect Parkinson’s disease years before a diagnosis.
What if a smartwatch could detect Parkinson’s disease (PD) before you knew something was wrong? A new study in Nature Medicineused digital movement sensors, the kind of technology found in smart devices, to detect Parkinson’s disease years before a clinical diagnosis.
By the time a person is diagnosed with Parkinson’s, they have already lost 50% to 70% of dopamine neurons. Their brain cells involved in memory, movement, motivation, mood and attention have degenerated. Due to this reality, researchers are eager to find accurate, affordable and non-invasive tools to help detect Parkinson’s sooner.
The Methods
For this study, researchers used smart devices with a movement tracker to collect information on participants’ movement and activity levels. The study assessed years of data points to find patterns that point to Parkinson’s. Researchers utilized data from a randomly selected group of 103,712 people participating in the UK Biobank, a study of more than 500,000 people aged 40–69 years with ongoing follow-up of clinical status. They used a wrist-worn accelerometer, which can detect movement and rate of speed changes (acceleration), to study average acceleration for each hour of the day, as well as sleep patterns, over a seven-day period.
The Results
Reduction in acceleration can be seen before PD diagnosis. Over the course of two years, 273 participants were diagnosed with Parkinson’s. Another 196 people received a new PD diagnosis more than two years after they collected the data. Remarkably, in the 196 people who received a PD diagnosis after the study, researchers saw a reduction in their average daytime acceleration several years before their PD diagnosis, during what is known as the prodromal stage (where early signs are present but no clinical diagnosis has been made).
No other diagnosis shows a similar pattern. Parkinson’s disease was the only diagnosis associated with a reduction in movement before (the prodromal stage) and after diagnosis. This reduction did not correlate with other diagnoses, including Alzheimer’s, dystonia (a sustained or repetitive muscle twisting, spasm or cramp) or osteoarthritis.
Sleep disturbances are more marked in PD than in other disorders. Using the movement data, researchers found reduced quality and duration of sleep both before and after PD diagnosis compared to people without PD. People diagnosed with PD slept fewer hours overall, had fewer consecutive hours of sleep and slept more frequently during the day than both people without PD and those in the prodromal stage. Sleep deterioration was observed in other diagnoses, but not to the same extent as seen in PD.
Acceleration data predicts prodromal PD. To test whether prodromal PD could be predicted based on the data, researchers created a model using age, sex and average acceleration. They successfully identified cases of Parkinson’s before diagnosis from the UK Biobank population. This model was better at predicting PD than a model that relied on other PD markers, including genetics, lifestyle (such as smoking or heavy alcohol use) and blood biomarkers.
Acceleration data predicts time to diagnosis. Finally, researchers leveraged the data to build a model to accurately predict the amount of time until a PD diagnosis. They also found that their model could predict the probability of not receiving a Parkinson’s diagnosis in the following several years.
While several studies have shown that changes in movement (including the use of digital gait measures) can be associated with prodromal PD, this is the first study to show the potential usefulness of accelerometers in detecting PD years before a clinical diagnosis.
Highlights
Wrist-worn movement trackers could detect changes in average acceleration years before a PD diagnosis, during the prodromal stage.
Only participants with PD experienced a reduction in acceleration both before and following a diagnosis, suggesting this measure is disease-specific and can potentially be used in early identification for people likely to be diagnosed with PD.
The accelerometry model could predict who would develop PD, and when the diagnosis might be expected.
What does this mean?
This study shows that the reduction in acceleration is PD-specific and can be detected years before a clinical PD diagnosis. This may mean that in the future, doctors may be able to leverage activity data from a smart device to diagnose Parkinson’s disease earlier.
However, more studies are needed before smart device data become a widely available diagnostic tool. Overall, more research is needed to help clinicians detect and confirm an early Parkinson’s diagnosis.
What do these findings mean to the people with PD right now?
People who are concerned that they may be experiencing Parkinson’s symptoms should talk to a healthcare provider.
Learn More
The Parkinson’s Foundation believes in empowering the Parkinson’s community through education. Learn more about PD and the topics in this article through our below resources, or by calling our free Helpline at 1-800-4PD-INFO (1-800-473-4636) for answers to your Parkinson’s questions.
¡Acompañe a la Parkinson's Foundation y a la comunidad del Parkinson en nuestra conferencia anual de California en español!
El programa de este año se centrará en el acceso a la atención del Parkinson. Aprenderá acerca de las diversas disciplinas involucradas en el manejo del Parkinson, conocerá tratamientos prometedores, y aprenderá cómo adaptarse a una enfermedad cambiante.
Este programa es gratuito y está disponible para cualquier persona interesada, incluyendo a las personas con Parkinson y sus familiares, amigos, aliados de cuidado y promotores de salud.
SEGURIDAD COVID: La salud y seguridad de nuestros participantes, patrocinadores, voluntarios y personal son nuestra máxima prioridad. Seguimos pendientes de las recomendaciones de los CDC y nos apegaremos a los lineamientos estatales y locales en vigor el día del evento referentes a COVID. Se harán ajustes, de ser necesario.
Join the Parkinson's Foundation in person for the Kentucky Parkinson's Symposium. Hear about ongoing research, current treatments, and resources available to help you live your best life with Parkinson's.
There is no charge to attend, but registration is required. This program is open to people with Parkinson's, their family, friends and the community.
Expert Speakers:
Zain Guduru, MD
Kentucky Neuroscience Institute
Laura Gusé, MPT
LSVT BIG
Ann Hanley
Parkinson’s Research Fund
Maria Hoctor, SLP
Encompass Health Cardinal Hill
Craig G. van Horne, MD, PhD
Kentucky Neuroscience Institute
Kara Lee, PT, DPT, NCS
University of Kentucky College of Health Sciences
Forrest Sturgill, MD
Kentucky Neuroscience Institute
Tritia R. Yamasaki, MD, PhD
Kentucky Neuroscience Institute
Panel Moderators:
Michael Nsoesie
University of Kentucky College of Medicine
George Quintero, PhD
University of Kentucky Neurorestoration Center
COVID SAFETY: The health and safety of our participants, sponsors, volunteers and staff are our top priority. We continue to monitor CDC recommendations and will adhere to state and local COVID guidelines in place on the event day. Adjustments will be made if necessary.
I was diagnosed with Parkinson’s disease (PD) 30 years ago. For me, it started as an achiness. My hands were in a lot of pain and stiff, but they weren’t trembling yet. I started looking for answers and one day, a doctor walked in the room, looked at me and said, “you have Parkinson’s” which I thought was a pretty bold statement for never having seen him before, but he was right.
After that appointment, I cried the whole way home. I was overwhelmed with questions. What does this mean for me? What does it mean for my spouse and my family?
I did not find any peace in those questions, and I did not know what to tell anybody. So, I kept it to myself. I had Parkinson’s for 15 years before I told anybody, including my kids. I was a clinical nurse, and I worried about how sharing the news would affect my job, social life and family life.
I did a lot of overthinking and watched my behavior. I held on to the things I could control until PD made it impossible. Any uncontrolled movement sent me spinning, wondering if anyone noticed. Part of my job as a nurse and diabetes educator required me to travel to different clinics to teach people how to manage their diabetes. When I was teaching the classes, my mouth would get dry, and I could hear changes in my voice. It was getting harder to hide. I just wanted to look and feel like everyone else around me, but once I hit the 15-year mark, I couldn’t hide it anymore.
When teaching those classes, I told participants they needed to focus on what they could control and the positive things they could do to manage their disease and I realized I needed to do the same thing for myself. I decided I wasn’t going to focus on the negatives of having Parkinson’s and I was going to do everything I could to slow its progression and improve my health.
Staying active is vital, and I made sure I exercised for at least 45 minutes to an hour every day.
I started to tell people in my life about my diagnosis, including my kids. That was hard and I didn’t want anyone to look at me and only see the disease. My kids were shocked, worried about me and wondered if it was hereditary. I think it took them some time to digest the news, but if anything, it has driven them to offer more help to me and my husband. They have been so supportive. My friends were also shocked. Some of them were angry I kept it from them, but I did what was best for me at the time.
Now, openly living with Parkinson’s is just part of life. As one of my friends says every time he watches me take a handful of pills, “better living through chemistry.” And in my world, that works.
I also want to share some of the things people don’t usually think about when they hear “Parkinson’s disease.” There are so many little and big ways this disease affects you.
It makes your eyes dry. I use daily eye drops and my doctor recommended I wrap plastic wrap around my head to keep my eyes moist. All I need is a CPAP machine to look like Darth Vader when I go to bed.
It affects your voice. My voice crackles now and I start to sound like Mae West.
It makes opening bags difficult. Those plastic bags at the grocery store are impossible to open. So is a bag of potato chips.
It changes the way you eat. I must have salads chopped extra fine or I end up wearing them. And do you know how hard it is to eat peas with a fork?
It makes putting on makeup a small feat. If I’m not careful, I’ll end up looking like Lucille Ball, painted all over, or a two-year-old with a coloring book. And put on mascara at your own risk!
It means small tasks are more difficult. Mending clothes, putting on jewelry, decorating a cake and buttoning buttons or pulling up zippers can feel impossible.
It affects how I interact with technology. I have an iPad, but I haven’t been able to master a lot of things on it because tremors cause me to touch the same button two or three times. Same with the cash machine, where punching in my PIN number wrong has caused me to lose my card.
These things are just a matter of fact for people with Parkinson’s. These little annoyances add up and change your life. I have found ways to deal with them, and there are worse things than living with Parkinson’s, but some days, it moves to the top of the list. Which is why I got involved with the Parkinson’s Foundation. I have met many people through them, and they have made a lot of information available and have excellent resources, like Centers of Excellence, for people to receive better care. The work the Parkinson’s Foundation is doing is offering hope to those affected by PD — and everyone needs hope.
But we need to do more. We need more research so we can find new treatments and a cure for Parkinson’s. We need to make sure everyone can access the best care and find support through the Foundation’s resources.
My friends ask me how they can help, and I say the best thing they can do is make a donation. We need to invest in research so we can find a cure. We need to provide support for people with PD and their care partners. The Parkinson’s Foundation is doing this work, but they need our help. We all need to do our part and support this work. No one should have to live like this.
