I was a globe-trotting, corporate science professional with a year-round list of active hobbies — cycling, fly fishing, hiking, backpacking, bird hunting and cross-country skiing to name a few. My earliest Parkinson’s disease (PD) symptoms were subtle and wouldn't have raised suspicions to anyone not already thinking about PD. First, I experienced difficult bowel movements and odd toe and foot cramps. At 50 years old (and seemingly out of nowhere), I developed a foot drag which I attributed to a disc issue.
At 58 years old, my local neurologist added the term Parkinsonism to my health profile. Two years later, a different doctor — this time a movement disorders specialist — diagnosed me with Parkinson’s with 99% certainty. He asked me why I waited so long to see him, and I responded that I thought my symptoms were a result of a lower back problem. In truth, I was embarrassed and afraid of receiving a PD diagnosis. I thought it meant my life as I knew it was over.
Over the next decade, I would experience all the more life-changing impacts of Parkinson’s. To my wife and friends, the symptoms had been obvious. I continued to blame my back until I turned 60, when the symptoms progressed so fast that I was unable to ride a bike or wade a rocky trout stream.
After I began responding to PD medication, I fought back with a vengeance. I enrolled in a yoga class to counter the stiffness. I resumed my guitar practice to work on manual dexterity. I joined a table tennis league to improve agility and reflexes. I got on my road bike, and by late summer I was back to pre-PD form. I competed in a fly-fishing tournament and waded rushing mountain rivers. Nine months after I my diagnosis, my neurologist told me that if I weren’t his patient, he wouldn’t suspect I have Parkinson’s. I was back!
It hasn’t been all roses since then. I live in Central Pennsylvania and there isn’t a movement disorders specialist within 100 miles, so I’ve figured out a lot about managing the disease on my own. I subscribed to a Parkinson’s research journal to stay up to date on medical advances. I monitor my symptoms and ask for medication tweaks when things aren’t working right. I continue to modify my physical therapy program when something stops working or a new symptom develops.
I discovered the Parkinson’s Foundation about a year ago. Their online resources helped me make sense of my PD history. I watched remarkable videos that opened my mind to new knowledge about the disease. I wish I had known about the Foundation ten years earlier.
I recently became a Parkinson’s Foundation Ambassador. I am retired now and have decided to devote my volunteer efforts to helping the PD community in Central Pennsylvania, which has low access to specialized Parkinson’s care. I am engaging with senior care facilities by delivering educational materials, familiarizing staff with the Parkinson’s Foundation website and connecting facility leadership with the organization so they can benefit directly from the excellent resources the Foundation provides.
Nobody should have to navigate this disease on their own.
Six years ago, I was a 53-year-old man, in great shape, a successful realtor and caregiver to my partner of 25 years. I started noticing changes in my ability to run, walk and write and I suffered from a tremor in my right hand. I was diagnosed with Parkinson’s disease (PD). Having so many responsibilities already, focusing on Parkinson’s was not at the forefront of my life. After my partner passed away, I realized that I had let the PD symptoms take over.
Everything I read focused on the fact that Parkinson’s was a progressive disease, and that I wasn't going to get any better. I wasted the next 4 years, having given up hope. I woke up one day and decided that I wasn't going to go down without a fight. While searching online for information about PD, I came across the Parkinson’s Foundation website. The Foundation’s resources helped me learn more about PD symptoms. From there, I decided that instead of looking at Parkinson’s symptoms as a whole, I could break them out individually and slowly work on getting better.
My worst symptom was stiffness in my right leg and foot. I could barely walk a half block without experiencing pain. I had a gym at my disposal but quickly realized that due to my symptoms, the treadmill was not an option for me. I then noticed the rowing machine — specifically the foot straps. The straps would keep my foot from "wandering" so I could get in a workout.
Fast forward six months later: I lost 13 pounds, and I am rowing 5,000 meters a day without pain! It took a few months to get over the hump regarding pain. I no longer have tremors. I look great for a 58-year-old man. I walk 2 hours every morning and have taken up juggling to enhance my hand-eye coordination!
Through friends and family, I have met several folks with PD since my diagnosis and have shared my story with them. My story has given them hope for a more normal life, and they can see the proof — in me! I have never been in better shape, and I don't have as many obstacles to deal with on a daily basis. Most people can't believe I even have Parkinson’s. Exercise has been a miracle in taking control of my symptoms and living a better life. I even purchased a three-level townhome, without an elevator.
I continue to counsel people who are newly diagnosed with PD and am happy to keep them from making the mistakes that I did.
Get out and move with your community! Every dollar raised supports the Parkinson’s Foundation mission to make life better for people affected by Parkinson’s disease (PD). At Moving Day Community Walks across the country, we’re fighting Parkinson’s and celebrating movement — proven to help manage Parkinson’s symptoms — and we’re doing it together. The Moving Day Community Walk Program is a complement to the Parkinson’s Foundation Moving Day, A Walk for Parkinson’s. These walks are family-friendly and help the Foundation make life better for people with PD.
The Community Walk program offers volunteers an opportunity to organize a walk in their own community that does not have a Moving Day event. The program leverages the personal experiences and community leadership of passionate volunteers to promote Parkinson’s awareness and raise funds for the Parkinson’s Foundation.
Each month, Dr. Rush invites you to slow down, breathe, and reconnect with yourself and your Parkinson’s community through a guided mindfulness practice. Together, we’ll explore simple ways to ground the body, calm the mind, and cultivate compassion and clarity that you can carry into your week.
Episode 153: How People with PD Can Prepare for Routine Outpatient Procedures
Since routine outpatient procedures may pose special needs and risks for someone with Parkinson’s disease (PD), extra planning is in order for the period before, during, and after the procedure. The procedures may be medical or dental, for example, teeth cleanings, colonoscopy, or magnetic resonance imaging (MRI).
Fortunately, the Parkinson’s Foundation has developed a course that highlights key recommendations and strategies to promote optimal care and health outcomes for people with PD during planned and unplanned hospital stays, which can include inpatient, outpatient, and emergency department hospital encounters.
In this podcast episode, movement disorders neurologist Muhammad Nashatizadeh, MD of the University of Kansas Medical Center in Kansas City, a Parkinson’s Foundation Center of Excellence, discusses how people with PD can incorporate this same safety protocol to ensure optimal outcomes when they plan for and have routine outpatient healthcare procedures.
Released: June 27, 2023
Dr. Muhammad Nashatizadeh completed his undergraduate biology degree in 1998 with highest honors as a University Scholar at Emporia State University. He completed his medical degree at the University of Kansas School of Medicine in 2003, internal medicine internship in Wichita in 2004, and neurology residency in Kansas City in 2007. He served as chief resident before pursuing movement disorder fellowship training at Baylor College of Medicine in Houston, Texas returning home to Kansas in 2008. He is board-certified in neurology by the American Board of Psychiatry and Neurology (ABPN).
Known as "Dr. Muhammad" by numerous patients, he worked as a community neurohospitalist for over six years while seeing clinic patients with movement or cognitive disorders. He returned to the University of Kansas School of Medicine as faculty in 2015 and has been the Director of Inpatient Movement Disorders since 2017. Primarily covering the inpatient consultation service, he works with emergency medicine, internal medicine, rehabilitation and surgical teams to help manage neurological problems affecting hospitalized patients. He educates geriatrics fellows, residents from neurology, internal medicine and psychiatry, and medical students to understand how medical disorders affect patients neurologically and how multiple problem layers cumulatively contribute to illness. For these efforts, he was voted as the Neurology Educator of the Year (Student Voice Award) by third year medical students for four years straight and selected as a top five finalist for the prestigious Rainbow Award in 2018-2019 honoring altruism, excellence, and professionalism.
Neuro Talk: 3 Promising Developments in Parkinson’s Research
Every year, the Parkinson’s Foundation funds the most exciting and promising research ideas in the Parkinson’s disease (PD) field. In our latest Neuro Talk, Chief Scientific Officer James Beck, PhD, is joined by three researchers whose studies were funded by the Parkinson’s Foundation. Their projects, which range from investigating environmental factors to understanding cognition, explain how research is helping us further our understanding of Parkinson’s.
Environmental factors that are linked to increased PD risk include pesticides, such as rotenone and paraquat, and the industrial solvent trichloroethylene (TCE). These chemicals disrupt the functioning of the mitochondria, the “powerhouse” of the cell. In addition, Dr. De Miranda has found that rotenone, paraquat and TCE cause activation of the protein affected by one of the most commonly inherited PD genetic mutations, LRRK2.
Dr. Sampson received a Stanley Fahn Junior Faculty Award to understand how Parkinson’s-linked pesticides affect the gut microbiome, the complex community of bacteria and other microbes, in the intestinal tract.
Studies suggest that people with PD harbor distinct gut microbiomes. By identifying gut microbiome changes, the effects of those specific changes on the body, and interactions between environmental exposure and genetic factors, Dr. Sampson hopes to link how insecticides trigger these defects of the intestinal tract and trigger Parkinson’s symptoms.
While therapies are available for some movement symptoms of PD, people with Parkinson’s may also deal with cognitive issues related to memory or attention. Dr. Wilkins is working to determine which PD symptoms are left unaddressed by current approaches, in hopes of developing novel treatments.
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A collaboration of Encompass Health and the Parkinson's Foundation
After many years of good symptom management, Parkinson's disease may become more challenging. Learn how Parkinson's symptoms may change over time and new strategies available for managing them.
Together we will hear from Parkinson's experts as they offer adaptive tips and tools for home-based activities like dressing, eating, bathing, and maintaining our independence at all stages of Parkinson's disease.
Speakers & Expert Panelists:
Jill Trumble, MD
St. Joseph's/Candler
Andrew Ameri, MD
Medical University of South Carolinas (MUSC)
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.
Each month, Dr. Rush invites you to slow down, breathe, and reconnect with yourself and your Parkinson’s community through a guided mindfulness practice. Together, we’ll explore simple ways to ground the body, calm the mind, and cultivate compassion and clarity that you can carry into your week.
Bienestar mental: abordando los cambios de pensamiento en el Parkinson
La enfermedad de Parkinson (EP) altera el cerebro, lo que puede afectar a todo el cuerpo. Mientras que el movimiento ralentizado y la rigidez son algunos de los síntomas más conocidos de la EP, el Parkinson también puede afectar la cognición (la forma de pensar, de aprender, de tomar decisiones y de abordar y resolver problemas). Aunque algunas personas notan cambios en el pensamiento (también llamados cambios cognitivos) décadas después de vivir con la EP, otras pueden empezar a notar dificultades incluso antes del diagnóstico.
Puede resultar difícil hablar acerca de los cambios cognitivos. A veces las personas temen que los demás las vean o las traten de forma diferente si se sinceran acerca de sus problemas de pensamiento. Además, puede preocuparles perder su lugar en la familia, su medio de vida o su independencia. Aunque suponga un desafío, reconocer y hablar acerca de los cambios cognitivos puede ayudarles a usted y a su equipo de atención a identificar las mejores terapias y estrategias de afrontamiento para promover su bienestar mental.
Reconocer los cambios de pensamiento relacionados con la EP
¿Alguna vez ha dicho, "No me hablen mientras cocino" o mientras hace alguna tarea específica? Aunque todo el mundo tiene dificultades en cierta medida para realizar varias tareas a la vez, a las personas con Parkinson les resulta especialmente difícil. Otras tareas que dependen de la función ejecutiva, como participar en conversaciones grupales, leer un libro o cuadrar una chequera, también pueden resultar difíciles.
La función ejecutiva es un término genérico que engloba muchas habilidades cognitivas que influyen en la vida diaria. Estas habilidades incluyen prestar atención, concentrarse y realizar varias tareas a la vez, así como las relacionadas con resolver problemas, planificar y seguir instrucciones de varios pasos. Estas capacidades nos ayudan a realizar tareas cotidianas y a tomar decisiones importantes en la vida. El Parkinson también puede afectar otras áreas cognitivas, como la velocidad de pensamiento, encontrar palabras, el lenguaje y el habla, la visión, la percepción de la profundidad y otras.
Abordar los síntomas cognitivos
Dado que la enfermedad de Parkinson afecta la cognición, puede ser difícil saber si los cambios en la memoria y el pensamiento están relacionados con la EP o se deben al envejecimiento normal, la medicación, el estrés, los problemas de sueño, la depresión, la ansiedad u otros problemas de salud. Si usted o un ser querido sospechan cambios en la memoria o el pensamiento, hable con su neurólogo. A veces, ajustar la medicación para la EP puede ayudar. Otras veces, el tratamiento eficaz de otros síntomas y afecciones puede mejorar los problemas de pensamiento.
El ejercicio es una herramienta poderosa para mejorar no sólo los síntomas motores de la EP, sino también algunos síntomas no motores, como los cambios en la memoria y el pensamiento. Las investigaciones demuestran que hacer ejercicio con regularidad puede mejorar la concentración, el procesamiento de la información y la cognición en general. Participar en una clase de ejercicios específicos para el Parkinson, salir a pasear, tomar una clase de yoga o Tai Chi o hacer estiramientos pueden ayudar a mejorar su función cognitiva.
Su neurólogo también puede referirlo a otros especialistas, como un neuropsicólogo o un terapeuta del habla y el lenjuaje. Estos profesionales de la salud ofrecen evaluaciones especializadas y enseñan estrategias para afrontar los cambios de pensamiento y mejorar la vida diaria.
El autocuidado y el apoyo son importantes para el bienestar del cuidador en todas las fases del Parkinson. Cuando un ser querido experimenta cambios cognitivos significativos, el riesgo de agotamiento del cuidador aumenta
Priorizar el bienestar mental a través del cambio cognitivo
El autocuidado, las estrategias creativas y la vida social pueden ayudarle a mantener su bienestar mental cuando enfrenta cambios de pensamiento. Estos consejos pueden ayudar:
Permítase experimentar el duelo. Nuestros pensamientos, recuerdos y nuestra forma de pensar son parte de nuestra identidad. Experimentar un cambio cognitivo puede provocar sentimientos de pérdida. Reconozca y honre sus sentimientos en torno a estos cambios.
Aligere su carga. Aceptar ayuda, ya sea con el manejo de medicamentos, hacer su casa más segura o el transporte. Aunque pueda resultar difícil, aceptar ayuda le permite centrarse en otras tareas y actividades importantes.
Reduzca su estrés. Las investigaciones sugieren que el estrés puede empeorar los síntomas motores y no motores de la EP, incluyendo la función ejecutiva y la cognición. El ejercicio y la atención plena (la práctica de estar plenamente en el momento presente) disminuyen el estrés y están relacionados con la mejora de los síntomas.
Utilice estrategias de compensación. Seguir una rutina diaria y limitar las distracciones puede facilitarle recordar lo esencial. Los recordatorios en su smartphone o en un papel colocado en el lugar adecuado también pueden ser útiles para mantenerse en curso. Otras estrategias consisten en reunir todos los elementos necesarios para una tarea —preparar una receta, por ejemplo— y guardarlos uno a uno conforme los vaya usando.
Manténgase activo. Construir conexiones sociales saludables puede ayudar a mantener la cognición. Fomente las relaciones con amigos, familiares y miembros de su comunidad. Considere la posibilidad de buscar un nuevo grupo de apoyo para compartir su experiencia y conectar con otras personas. Llame a nuestra Línea de Ayuda, 1-800-4PD-INFO (1-800-473-4636), opción 3 para español, para encontrar un grupo cercano o visite PD Conversations, nuestra comunidad en línea.
Cambios avanzados en el pensamiento
A medida que avanza el Parkinson, los cambios en el pensamiento pueden evolucionar desde cambios sutiles hasta deterioro cognitivo leve (DCL o MCI, del inglés Mild Cognitive Impairment) o incluso demencia (cambios más severos en el pensamiento que pueden afectar la independencia). Hable con su médico sobre la mejor forma de manejar los cambios avanzados en el pensamiento.
La investigación muestra que algunos medicamentos utilizados en la enfermedad de Alzheimer pueden ser beneficiosos en la demencia por la enfermedad de Parkinson (DEP o PDD, del inglés Parkinson’s Disease Dementia), incluidos el donepezilo, la galantamina y la rivastigmina, medicamento aprobado por la FDA para la DEP.
Recursos útiles
La Parkinson’s Foundation está a su disposición. Explore más de nuestros recursos sobre el bienestar mental:
Neuro Talk: Strategies for Managing Parkinson’s Disease Symptoms
Each person’s experience with Parkinson’s disease (PD) is unique. Understanding how to manage symptoms can take time, but will ultimately empower you to live better with PD.
In our latest Neuro Talk, Chief Scientific Officer James Beck, PhD, discusses common movement and non-movement symptoms of Parkinson’s. Dr. Beck also explains available treatments and ongoing research related to both types of symptoms.
Parkinson's is more than a movement disease that has motor and non-motor symptoms. This video provides an overview of non-motor symptoms that can be related to Parkinson's and how to communicate these symptoms to your medical team to improve your medical care. It also discusses ways to improve care coordination and communication across your team of medical providers.
Speaker
Christina Vaughan, MD, MHS
Chief, Section of Neuro-Palliative Care, University of Colorado, Anschutz Medical Campus
There is no charge to attend, but registration is required.
Each month, Dr. Rush invites you to slow down, breathe, and reconnect with yourself and your Parkinson’s community through a guided mindfulness practice. Together, we’ll explore simple ways to ground the body, calm the mind, and cultivate compassion and clarity that you can carry into your week.
This video defines the role of a care partner and explains why having a care partner is important for people with Parkinson's. It provides helpful tools for care partners to recognize signs of strain and how to locate sources of support to look after your own health as a care partner.
Speaker
Janis Miyasaki, MEd, FRCPC, FAAN
Division Director, Neurology, University of Alberta
There is no charge to attend, but registration is required.
Each month, Dr. Rush invites you to slow down, breathe, and reconnect with yourself and your Parkinson’s community through a guided mindfulness practice. Together, we’ll explore simple ways to ground the body, calm the mind, and cultivate compassion and clarity that you can carry into your week.
