Me diagnosticaron la enfermedad de Parkinson de inicio temprano (EPIT) a los 47 años, por leves movimientos de mi pierna derecha. Hoy, ya han pasado 7 años desde aquel día y les cuento que ahora entiendo que mis síntomas empezaron muchos años antes.
A los 30, estudiaba peluquería y, cuando hice mi primer corte, me temblaban las manos. Se lo atribuí a los nervios del momento. También, cuando dormía, me despertaba la rigidez como consecuencia de contracturas de mucho dolor.
Hoy estoy medicada, con apoyo psicológico, fisioterapia y, personalmente, voy buscando un alivio a cada síntoma que va apareciendo, tratando de poner buenas energías para alejar la depresión que a veces me pone sensible.
Extraño mi trabajo. Ya no lo puedo hacer por la fatiga, falta de fuerza y otros síntomas como el dolor.
Estoy resurgiendo de un estado de angustia, con ayuda de mi psicóloga, que me ha hecho ver que no todo lo que me pasa es por el Parkinson.
He ido trabajando ese tema hasta sentirme más liberada.
Ya no pienso tanto en el Parkinson como enfermedad, sino como algo que convive en mí y que hizo cambiar mis días.
Mi más importante reto es hacer sentir bien a mi familia y lo he logrado sonriendo. Reír es buena terapia para los músculos de la cara. Lo más mínimo es mucho para sentirme bien. Quiero que mis hijos, mi compañero de vida y mi familia no vean en mí a una persona que no lucha. Quiero dejar un buen ejemplo de lucha y logros para ellos; que me recuerden siempre por los momentos más lindos que he vivido con este diagnóstico.
Siempre observo a las personas y me quedo con lo positivo y lo trato de integrar en mis días.
Me encantaría ser de ayuda en los proyectos que estudia la medicina para que, si no es a mí, sirvan para futuras generaciones.
Estoy atenta a mis síntomas y los estudio, con la alegría de siempre, hasta ahora, encontrar el motivo y el remedio.
Cuando me aparece algún síntoma, me digo: “A ver Mónica, ¿qué pasó, si antes estabas bien? ¿Qué hiciste? ¿Qué cambiaste en tus tareas diarias? ¿Los remedios los tomaste bien? Y sigo preguntándome hasta conseguir una repuesta. Si no la encuentro, empiezo a buscar terapias para sacar esa molestia que hay en mí.
¡Los animo a estudiarse y buscar la solución, que siempre está!
Hoy, hago ejercicios físicos y estoy en continuo movimiento cuando más puedo. He logrado mental y físicamente sentirme sana gracias a los remedios, a mis esfuerzos y a mis pensamientos positivos.
Los invito a hacer ejercicio. Es lo mejor de lo mejor. Yo no lograba subir y bajar escaleras; hoy lo he logrado, como muchas cosas más.
Piensen que no vamos a morir ahora de Parkinson. Puede ocurrir otro motivo que nos lleve a morir antes, así que vivamos cada día a pleno, seamos felices y disfrutemos los momentos que podamos. Riamos, charlemos, cantemos y hagamos ejercicio.
Estoy para ayudar y compartir lo que yo he hecho para mejorar los distintos síntomas.
Check-in starts at 12 p.m. and the program starts at 1 p.m.
There are many non-motor challenges associated with Parkinson's disease that may not always be easy to discuss. With a focus on sleep issues and falls, this program will provide strategies for coping and talking about it with healthcare providers or loved ones. We will hear about how Parkinson's affects sleep quality and learn about the neurobiology behind fall risk.
Speakers
Mark Garwood, MD
Assistant Professor of Neurology, Michigan Medicine
Vikas Kotagal, MD, MS
Associate Professor of Neurology, Michigan Medicine
Katie Afton
Coordinator of Rock Steady Boxing at TITLE A2
There is no charge to attend, but registration is required. This program is open to people with Parkinson's, their families, friends, and the community.
This program is done in partnership with Michigan Medicine and registration information will be shared with them.
Sleep disturbances are a common and often challenging symptom of Parkinson’s disease (PD). This program explores three prevalent nighttime interruptions—Restless Legs Syndrome (RLS), REM Sleep Behavior Disorder (RBD), and insomnia—that can affect individuals with PD and their care partners. This session will provide an in-depth look at the causes, symptoms, and practical management strategies for these sleep disorders.
Speaker
Roneil G. Malkani, MD
Associate Professor, Northwestern University Feinberg School of Medicine
Neurologist, Northwestern Memorial Hospital
Specializing in Sleep Medicine and Movement Disorders
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.
This program offers an introduction and basic overview of Parkinson’s disease (PD). PD varies from person to person and changes over time. Discover its causes, common symptoms, available treatments and effective strategies for managing them. Learn practical daily living tips to empower you to take charge of your health and to navigate the challenges of living with PD.
Speaker
Aditya Vikram Boddu, MD
Assistant Professor
Department of Neurology
Division of Movement Disorders
University of Arkansas for Medical Sciences
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.
Navigating Parkinson’s disease involves looking ahead, learning and adjusting as symptoms and needs change. This program addresses some of the challenges of advancing PD and explores strategies to prepare for the future, including how to evolve your care plans and treatments throughout progression so you can live your best life with PD now.
Speakers
Nami Shah, MD
Department of Neurology, Movement Disorders
University of Rochester
Megan Hotchkiss, PT, DPT
Director of Clinical Education/Associate Professor
Ithaca College
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.
Episode 174: The Evolution of PD GENEration for Genetic Testing & Counseling
The Parkinson’s Foundation makes life better for people with Parkinson’s disease (PD) by improving care and advancing research toward a cure. The Foundation recognizes the importance of funding and supporting research studies dedicated to better understanding the causes of PD, developing more effective treatments, and ultimately finding a cure. The Foundation awards research grants to support investigators working on diverse research projects, along with collaborating with other institutions to advance PD research.
One of its major initiatives is exploring the genes and other factors associated with the development of PD through an international project, PD GENEration: Mapping the Future of Parkinson’s Disease. By gathering genetic information from tens of thousands of people with PD, this study offers genetic testing for relevant disease-related genes and genetic counseling to help participants understand their results, all at no cost to them. At the same time, knowledge gathered through PD GENEration will promote more focused, gene-specific clinical trials of drugs and may lead to novel therapy options for people with PD. In this episode, we explore the origins of PD GENEration, its growth over the years, and its goals with Dr. James Beck, Chief Scientific Officer of the Parkinson’s Foundation.
Released: December 31, 2024
As Chief Scientific Officer, James Beck, PhD, sets the strategic direction for the Parkinson’s Foundation research vision. Dr. Beck oversees a portfolio that has guided more than $400 million in research to explore what causes Parkinson’s disease (PD) and how to improve treatments, working towards a world without Parkinson’s disease. He has played an integral role in positioning the organization as a world leader in accelerating Parkinson’s research.
Dr. Beck launched PD GENEration: Mapping the Future of Parkinson's Disease, a national study started by the Parkinson’s Foundation in 2019 that offers genetic testing for Parkinson’s-related genes and genetic counseling at no cost for participants with a confirmed PD diagnosis. Additionally, he led the team that updated the estimated prevalence of PD in the U.S. and globally and collaborated with several organizations to develop the economic burden of Parkinson’s disease.
Parkinson's Foundation: The PD Solo Network - Living Alone While Living with PD
There are two sessions available: You are welcome to choose one or attend both.
– 1 p.m. to 2:30 p.m. ET
– 7:30 p.m. to 9 p.m. ET
Please note: These meetings are intended for individuals diagnosed with Parkinson’s disease who live alone, by choice or circumstance – only. If this is not your situation, please contact the Parkinson’s Foundation Helpline to receive information about resources that best meet your needs. Call the Helpline at 1-800-473-4636 (1-800-4PD-INFO) or helpline@parkinson.org.
What is the PD Solo Network:
A virtual network for people living with Parkinson's disease (PD) who live alone, by choice or circumstance. The purpose of this group is to create a community of support for those living without a care partner. People living with PD are the experts about what challenges, changes and accommodations are needed on a daily basis. This network will provide a place to share ideas, concerns, brainstorm strategies, suggestions, resources & to build relationships.
The Parkinson's Foundation is providing the initial funding and support to kick start this network. It will most likely become a very strong network that will operate independently although the Parkinson's Foundation will always be an entity of support & information for the participants.
Upcoming Meeting Dates:
– March 11, 2025
– April 8, 2025
– May 13, 2025
– June 10, 2025
There is no charge to attend, but registration is required in order to receive the Zoom link.
Parkinson's Foundation: The PD Solo Network - Living Alone While Living with PD
There are two sessions available: You are welcome to choose one or attend both.
– 1 p.m. to 2:30 p.m. ET
– 7:30 p.m. to 9 p.m. ET
Please note: These meetings are intended for individuals diagnosed with Parkinson’s disease who live alone, by choice or circumstance – only. If this is not your situation, please contact the Parkinson’s Foundation Helpline to receive information about resources that best meet your needs. Call the Helpline at 1-800-473-4636 (1-800-4PD-INFO) or helpline@parkinson.org.
What is the PD Solo Network:
A virtual network for people living with Parkinson's disease (PD) who live alone, by choice or circumstance. The purpose of this group is to create a community of support for those living without a care partner. People living with PD are the experts about what challenges, changes and accommodations are needed on a daily basis. This network will provide a place to share ideas, concerns, brainstorm strategies, suggestions, resources & to build relationships.
The Parkinson's Foundation is providing the initial funding and support to kick start this network. It will most likely become a very strong network that will operate independently although the Parkinson's Foundation will always be an entity of support & information for the participants.
Upcoming Meeting Dates:
– January 14 and January 28, 2025
– February 11 and February 25, 2025
– March 11 and March 25, 2025
– April 8 and April 22, 2025
– May 13 and May 27, 2025
– June 10 and June 24, 2025
There is no charge to attend, but registration is required in order to receive the Zoom link.
Parkinson's Foundation: The PD Solo Network - Living Alone While Living with PD
There are two sessions available: You are welcome to choose one or attend both.
– 1 p.m. to 2:30 p.m. ET
– 7:30 p.m. to 9 p.m. ET
Please note: These meetings are intended for individuals diagnosed with Parkinson’s disease who live alone, by choice or circumstance – only. If this is not your situation, please contact the Parkinson’s Foundation Helpline to receive information about resources that best meet your needs. Call the Helpline at 1-800-473-4636 (1-800-4PD-INFO) or helpline@parkinson.org.
What is the PD Solo Network:
A virtual network for people living with Parkinson's disease (PD) who live alone, by choice or circumstance. The purpose of this group is to create a community of support for those living without a care partner. People living with PD are the experts about what challenges, changes and accommodations are needed on a daily basis. This network will provide a place to share ideas, concerns, brainstorm strategies, suggestions, resources & to build relationships.
The Parkinson's Foundation is providing the initial funding and support to kick start this network. It will most likely become a very strong network that will operate independently although the Parkinson's Foundation will always be an entity of support & information for the participants.
Upcoming Meeting Dates:
– January 14 and January 28, 2025
– February 11 and February 25, 2025
– March 11 and March 25, 2025
– April 8 and April 22, 2025
– May 13 and May 27, 2025
– June 10 and June 24, 2025
There is no charge to attend, but registration is required in order to receive the Zoom link.