Raise Awareness

How to Manage Chronic Conditions Through Parkinson’s Stages

Woman helping elderly woman in pain

While no two people with Parkinson’s disease (PD) experience the same symptoms or rate of progression, there are several chronic conditions they are at greater risk of developing. However, the changes associated with chronic conditions tend to occur slowly and are often manageable. Awareness of these conditions can help you take steps to achieve the best long-term outcomes.  

The following article is based on a Parkinson’s Foundation Expert Briefing about managing multiple chronic conditions in Parkinson’s, hosted by Christina Swan, MD, PhD, assistant professor of neurological sciences and fellowship director, Division of Movement Disorders, Rush University Medical Center, a Parkinson's Foundation Center of Excellence

How Parkinson’s Progresses

Parkinson's is a progressive disease influenced by an increasing loss of dopamine, a brain chemical critical for body movement and more, and imbalances in other brain chemicals, including:  

  • Acetylcholine, which can impact memory and thinking (cognition).  

  • Norepinephrine and serotonin, related to daytime fatigue and sleep disturbances. 

  • Low serotonin can also increase depression and anxiety (often successfully treatable in PD). 

Early Stages of Parkinson’s

Slow movements, tremor and muscle stiffness (rigidity) are characteristic movement symptoms of Parkinson’s. Within the first five years of diagnosis, medications that replace dopamine, such as levodopa, are often divided into three daily doses to provide steady symptom control. 

As symptoms and needs change, you and your care team can explore medication adjustments, lifestyle changes and other treatment options. While levodopa can improve many movement symptoms of Parkinson’s, it generally does not treat non-movement PD symptoms.   

Constipation, due to nerve signaling changes in the gut, is common before and throughout the course of PD. It can cause stomach pain, bloating and nausea, and might slow the absorption of medicines. To ease constipation, exercise regularly, aim to drink between 48-64 ounces of water daily and eat a fiber- and plant-rich whole-food diet, along with prunes and bran flakes. 

When diet and lifestyle changes aren’t enough, your doctor might recommend fiber supplements, stool softeners, laxatives or a prescription medication or refer you to a gastroenterologist — a specialist in digestion. 

Mid-stage PD

After living with PD for some time, more frequent levodopa dosing or added medications may be needed. This can be referred to as stage 3 of Parkinson’s. A person with mid-stage PD might experience: 

  • Dyskinesia: involuntary, erratic, writhing movements of the face, arms, legs or trunk that develop in response to levodopa.  

  • Neurogenic orthostatic hypotension: low blood pressure related to PD, identified by a drop of more than 20 points when rising. Low blood pressure can lead to fatigue, dizziness, loss of consciousness and falls, and can impact short-term memory.  

To address low blood pressure:

  • Drink a minimum of 32 ounces of fluid daily, which can increase pressure throughout the body.  

  • Wear above-the-knee compression stockings to prevent blood from pooling in the legs. 

  • Talk to your doctor about increasing dietary salt to help your body absorb more moisture. Your doctor might also recommend certain medications, such as fludrocortisone, which helps the body retain salt and water, or midodrine or droxidopa — these help boost blood pressure. 

Advanced PD

After living with Parkinson’s for 10 years or more, people may experience more bothersome dyskinesias and levodopa may wear off more quickly, or sometimes not work at all.  

Swallowing changes (dysphagia) in advanced PD can make it hard to ingest medications, cause coughing while eating or drinking, lead to weight loss, choking or raise the risk for aspiration pneumonia, a complication from food or liquid entering the airway or lungs.  

To addressing swallowing issues:

  • Talk to your doctor about seeing a speech-language pathologist, a trained healthcare professional who specializes in evaluating and treating speech, swallowing and other challenges.  

  • Your pathologist may recommend a dietician, a nutrition specialist who can help modify diet to ease swallowing and reduce weight loss. 

  • Sucking on hard candy can stimulate swallowing and can help clear pooling saliva; botulinum toxin injections can reduce saliva production to match the slower swallow in PD; oral atropine drops can also decrease saliva but can cause confusion in the older population. 

Falls and Balance Issues

Fall risks increase as Parkinson’s progresses. Falls can cause fractures and bleeding, particularly dangerous for someone taking a blood thinner, and are a major cause of hospitalization in PD.  

Balance problems, shuffling or freezing of gait — the temporary inability to move — are common risk factors for falls. To manage freezing of gait, use: 

  • A wide stance and take big steps. LSVT BIG Parkinson's-certified therapists are trained to help improve walking. 

  • Visual aids, such as painter’s tape or a laser-cue can help a person visualize stepping over a line to maximize movement. 

Medication side effects such as drowsiness and confusion, age-related double-vision (with distance) and PD-related double-vision can raise the risk of falling. Fall risks can be higher in the morning before Parkinson's medications kick in.  

To minimize fall risks:

  • Share symptoms with your neurologist and monitor any issues with medication changes. 

  • Stay active, exercise regularly and consider physical therapy, which helps people with PD keep moving.  

  • See a physical or occupational therapist, who can also recommend mobility aids, such as a rollator, walker or cane.  

  • Keep mobility aids near the bed for nighttime bathroom trips. A bedside commode can also decrease fall risks. 

  • See your ophthalmologist or seek a neuro-ophthalmologist (a specialist with expertise in vision issues related to neurological diseases) regularly to screen for vison changes.  

  • Declutter your home and remove unused furniture to reduce tripping hazards. 

Chronic Medical Problems and PD

There are 90,000 people diagnosed with PD each year in the U.S. The average age of diagnosis is 60. This puts them at risk for other common age-related medical conditions, including: 

  • Cardiovascular disease, which leads to more than 800,000 annual heart attacks in the U.S. 

  • Arthritis, which impacts more than 1 in 4 American adults and can occur in large joints, such as the hips or knees, or the spine and can further increase pain, numbness and rigidity in someone with Parkinson’s.  

  • Osteoporosis decreases bone density, which increases the risk for fractures with falls. Exercise, physical therapy and medication for low bone density can help. 

Diabetes

Diagnosed in 1.2 million Americans, diabetes can lead to damage in organs, blood vessels and nerve endings — causing neuropathy (numbness) in the feet and elsewhere. Along with diabetic vision changes, neuropathy can increase issues with balance for people with PD.  

Persistently high blood sugar can impact memory and thinking, as can Parkinson’s brain changes. Consider:  

  • Regular foot exams to detect neuropathy, careful monitoring of blood sugar, periodic monitoring of kidney function and consistent exercise can help detect and manage diabetes in someone with PD. 

  • Diabetes can damage the kidneys. Common medications used in Parkinson's, such as amantadine and gabapentin, are solely processed by the kidney. These may need to be adjusted or eliminated in someone who also has diabetes. 

Avoiding Medication Interactions

Work with your healthcare team to coordinate care and share information across specialists to ensure everyone has a picture of your medical management — including prescribed medications and possible interactions. 

Parkinson's medications generally have a low interaction risk. Of note:  

  • Iron can decrease the absorption of levodopa.  

  • Medication such as metoclopramide (to treat slow stomach emptying in diabetes) or prochlorperazine, can block dopamine receptors and worsen PD symptoms. 

  • Monoamine oxidase B (MAO-B) inhibitors rasagiline and selegiline, used in PD care, can interact with medications used for cough and colds, such as Sudafed, dextromethorphan or phenylephrine, causing dangerously high blood pressure.  

  • Some anti-depressants, such as mirtazapine, can also interact with rasagiline and selegiline to spike blood pressure. 

Learn More

To discover more about managing health in Parkinson’s, explore these resources: 

Raise Awareness

Cómo controlar las afecciones crónicas a través de las etapas del Parkinson

Woman helping elderly woman in pain

Aunque para cada persona con la enfermedad de Parkinson (EP) los síntomas y el ritmo de progresión son distintos, tienen un mayor riesgo de desarrollar ciertas afecciones crónicas. Sin embargo, los cambios asociados a las enfermedades crónicas tienden a producirse lentamente y suelen ser manejables. El conocimiento de estas afecciones puede ayudarle a tomar medidas para lograr los mejores resultados a largo plazo.  

El siguiente artículo se basa en una “Charla con expertos” de la Parkinson's Foundation acerca del manejo de múltiples condiciones crónicas en la EP, presentada por la doctora Christina Swan, profesora adjunta de ciencias neurológicas y directora de la especialidad, División de Trastornos del Movimiento, Rush University Medical Center, un Centro de Excelencia de la Parkinson’s Foundation. 

Cómo avanza el Parkinson

El Parkinson es una enfermedad progresiva influida por una pérdida creciente de dopamina (una sustancia química del cerebro, fundamental para el movimiento del cuerpo y más) y desequilibrios en otras sustancias químicas cerebrales, incluyendo:  

  • La acetilcolina, que puede influir en la memoria y el pensamiento (cognición).  

  • La norepinefrina y la serotonina, relacionadas con la fatiga diurna y los trastornos del sueño. 

  • Un nivel bajo de serotonina también puede aumentar la depresión y la ansiedad (a menudo tratables con éxito en la EP). 

Etapas iniciales del Parkinson

Los movimientos lentos, el temblor y la rigidez muscular son síntomas motores característicos del Parkinson. En los primeros cinco años del diagnóstico, los medicamentos que sustituyen a la dopamina, como la levodopa, suelen dividirse en tres dosis diarias para proporcionar un control constante de los síntomas. 

A medida que cambian los síntomas y las necesidades, usted y su equipo de atención médica pueden explorar ajustes de la medicación, cambios en el estilo de vida y otras opciones de tratamiento. Aunque la levodopa puede mejorar muchos de los síntomas motores de la enfermedad de Parkinson, por lo general no trata síntomas no motores de la EP.   

El estreñimiento, debido a cambios en las señales nerviosas del intestino, es frecuente antes y durante el curso de la EP. Puede causar dolor de estómago, hinchazón y náuseas y podría ralentizar la absorción de medicamentos. Para aliviar el estreñimiento, haga ejercicio con regularidad, intente beber entre 48 y 64 onzas de agua al día y siga una dieta integral rica en fibra y vegetales, junto con ciruelas pasa y hojuelas de salvado. 

Cuando los cambios en la dieta y el estilo de vida no son suficientes, su médico puede recomendar suplementos de fibra, ablandadores de heces, laxantes o medicamentos con receta o mandarlo con un gastroenterólogo (especialista en digestión). 

La EP intermedia

Después de vivir con la EP durante algún tiempo, es posible que se necesite una dosificación más frecuente de levodopa o agregar otros medicamentos. Esto puede denominarse etapa 3 del Parkinson. Una persona con la EP intermedia puede experimentar: 

  • Discinesia: movimientos involuntarios, erráticos y de retorcimiento de la cara, los brazos, las piernas o el tronco en respuesta a la levodopa.  

  • Hipotensión ortostática neurogénica: presión arterial baja relacionada con la EP, identificada por un descenso de más de 20 puntos al levantarse. La presión arterial baja puede provocar fatiga, mareos, pérdida de conciencia y caídas y puede afectar a la memoria a corto plazo.  

Para tratar la presión arterial baja:

  • Beba un mínimo de 32 onzas de líquido al día, lo que puede aumentar la presión en todo el cuerpo.  

  • Utilice medias de compresión por encima de la rodilla para evitar que la sangre se acumule en las piernas. 

  • Hable con su médico acerca de aumentar la sal en la dieta para ayudar a su cuerpo a absorber más humedad. Su médico también podría recomendar ciertos medicamentos, como la fludrocortisona, que ayuda al organismo a retener sal y agua o la midodrina o la droxidopa, que ayudan a aumentar la presión arterial. 

La EP avanzada

Después de vivir con Parkinson durante 10 años o más, las personas pueden experimentar discinesias más molestas y el efecto de la levodopa puede desaparecer más rápidamente o a veces no funcionar en absoluto.  

Los cambios al tragar (disfagia) en la EP avanzada pueden hacer que sea difícil tomar medicamentos, causar tos al comer o beber, provocar pérdida de peso, asfixia o aumentar el riesgo de neumonía por aspiración, una complicación que resulta cuando entran alimentos o líquidos en las vías respiratorias o los pulmones.  

Para atender los problemas de deglución:

  • Hable con su médico sobre la posibilidad de ver a un patólogo del habla y el lenguaje, un profesional de la salud especializado en evaluar y tratar problemas para hablar, tragar (deglución) y otros más.  

  • Su patólogo del habla y el lenguaje puede recomendarle un dietista, un especialista en nutrición que puede ayudarle a modificar la dieta para que sea más fácil tragar y así reducir la pérdida de peso. 

  • Chupar caramelos duros puede estimular la deglución y ayudar a eliminar la acumulación de saliva; las inyecciones de toxina botulínica pueden reducir la producción de saliva para adaptarse a la deglución más lenta de la EP; las gotas orales de atropina también pueden reducir la saliva, pero pueden causar confusión en la población de edad avanzada. 

Caídas y problemas de equilibrio

El riesgo de caídas aumenta a medida que avanza el Parkinson. Las caídas pueden provocar fracturas y hemorragias (especialmente peligrosas para las personas que toman anticoagulantes) y son una causa importante de hospitalización en la EP.  

Los problemas de equilibrio, arrastrar los pies o la congelación de la marcha (la incapacidad temporal para moverse) son habituales factores de riesgo de caídas. Para manejar la congelación de la marcha, utilice: 

  • Una postura amplia y dé grandes pasos. Los terapeutas certificados en Parkinson de LSVT BIG están formados para ayudar a mejorar la marcha. 

  • Las ayudas visuales, como la cinta adhesiva para pintar o un apuntador láser, pueden ayudar a la persona a visualizar el paso por encima de una línea para maximizar el movimiento. 

Los efectos secundarios de la medicación, como somnolencia y confusión, visión doble relacionada con la edad (con la distancia) y visión doble relacionada con la EP, pueden aumentar el riesgo de caídas. El riesgo de caídas puede ser mayor por la mañana, antes de que haga efecto la medicación contra el Parkinson.  

Para minimizar el riesgo de caídas:

  • Comparta los síntomas con su neurólogo y esté atento a cualquier problema con cambios en la medicación. 

  • Manténgase activo, haga ejercicio con regularidad y considere la fisioterapia, que ayuda a las personas con la EP a mantenerse móviles.  

  • Vea a un fisioterapeuta o terapeuta ocupacional, que también puede recomendar dispositivos de ayuda para la movilidad, como un Rollator, una andadera o un bastón.  

  • Mantenga los dispositivos de ayuda para la movilidad cerca de la cama para ir al baño por la noche. Un cómodo junto a la cama también puede reducir el riesgo de caídas. 

  • Acuda a su oftalmólogo o busque un neurooftalmólogo (especialista en problemas de visión relacionados con enfermedades neurológicas) con regularidad para detectar alteraciones visuales.  

  • Organice su hogar y retire los muebles que no utilice para reducir el riesgo de tropiezos. 

Problemas médicos crónicos y la EP

Cada año se diagnostica la EP a 90,000 personas en los EE.UU. La edad promedio del diagnóstico es de 60 años. Esto los pone en riesgo de tener otras afecciones médicas frecuentes relacionadas con la edad, como son: 

  • Enfermedades cardiovasculares, que provocan más de 800,000 infartos anuales en los EE.UU. 

  • Artritis, que afecta a más de 1 de cada 4 adultos en los EE.UU. y puede producirse en articulaciones grandes, como las caderas o las rodillas, o en la columna vertebral, y puede aumentar aún más el dolor, el entumecimiento y la rigidez en una persona con Parkinson.  

  • Osteoporosis, que disminuye la densidad ósea, lo que aumenta el riesgo de fracturas con las caídas. El ejercicio, la fisioterapia y la medicación para la baja densidad ósea pueden ayudar. 

Diabetes

Diagnosticada a 1.2 millones de personas en los EE.UU., la diabetes puede dañar órganos, vasos sanguíneos y terminaciones nerviosas, provocando neuropatía (entumecimiento) en los pies y otras partes del cuerpo. Junto con los cambios diabéticos en la visión, la neuropatía puede aumentar los problemas de equilibrio de las personas con la EP.  

Un nivel continuamente elevado de azúcar en sangre puede afectar la memoria y el pensamiento, al igual que los cambios cerebrales del Parkinson. Tenga en cuenta que:  

  • Los exámenes regulares de los pies para detectar neuropatías, un control cuidadoso del azúcar en sangre, el monitoreo periódico de la función renal y el ejercicio constante pueden ayudar a detectar y controlar la diabetes en una persona con la EP. 

  • La diabetes puede dañar los riñones. Los medicamentos habituales utilizados en el Parkinson, como la amantadina y la gabapentina, son procesados únicamente por el riñón. Es posible que deban ajustarse o eliminarse en alguien que también tenga diabetes. 

Evitar interacciones medicamentosas

Colabore con su equipo médico para coordinar la atención y compartir información entre especialistas para garantizar que todos tengan un cuadro de su tratamiento médico, incluyendo los medicamentos recetados y las posibles interacciones. 

Por lo general, los medicamentos para el Parkinson tienen un bajo riesgo de interacción. A tener en cuenta:  

  • El hierro puede disminuir la absorción de la levodopa.  

  • Medicamentos como la metoclopramida (para tratar el vaciado lento del estómago en la diabetes) o la proclorperazina, pueden bloquear los receptores de dopamina y empeorar los síntomas de la EP. 

  • La rasagilina y la selegilina, inhibidores de la monoaminooxidasa B (MAO-B), utilizados en el tratamiento de la EP, pueden interactuar con medicamentos para la tos y los resfriados, como Sudafed, dextrometorfano o fenilefrina, provocando una peligrosa hipertensión arterial.  

  • Algunos antidepresivos, como la mirtazapina, también pueden interactuar con la rasagilina y la selegilina elevando la presión arterial. 

Aprenda más 

Para descubrir más acerca del manejo de la salud en la EP, explore estos recursos:

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.  

Podcasts

Episodio 32: Los desafíos del habla y la deglución

Los profesionales de la salud aliados son un grupo de profesionales médicos cuya función y conocimientos complementan la labor de los médicos. Entre ellos se encuentran los fisioterapeutas, terapeutas del habla y el lenguaje, nutricionistas y más. Son tan importantes como sus especialistas en trastornos del movimiento y neurólogos y desempeñan un papel vital en la creación de un equipo de atención al Parkinson integral y completo que atienda sus necesidades individuales y se ocupe de su bienestar general. 

En este episodio, hablamos con Ana Molano, una terapeuta del habla y el lenguaje especializada en el tratamiento de los trastornos de la voz y la deglución. A medida que avanza la enfermedad de Parkinson, la voz de una persona puede volverse más suave o puede experimentar dificultades para tragar. Ana habla de las ventajas de trabajar con un terapeuta del habla para evaluar y abordar los desafíos del habla y la deglución en la EP. Destaca la importancia de obtener una evaluación de referencia para identificar los problemas actuales, lo que ayuda a crear un plan terapéutico individualizado. También habla de los síntomas frecuentes que puede experimentar una persona con la EP, así como de algunos signos menos comunes a los que hay que estar atentos.

Publicado: 26 de noviembre de 2024

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 of  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, if they notice movement symptoms, you can share that Parkinson’s makes it harder for your body to move and share what you do to manage symptoms. 

  • 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

My PD Story

Rex Polkinghorne Headshot
People with PD

Rex Polkinghorne

I was 42 years old and newly single. I had a high-pressure job I was excelling at, and my body was in top shape. But my left hip was so tight all the time, my tennis serve was off, and I was having a hard time keeping the rhythm in spin class.  

I chalked it up to excessive exercise, or my new sports car with the heavy clutch. But then my toes started to move by themselves, which was curious. And a friend standing behind me mentioned that my left arm was not swinging when I walked. Soon I started to really have to think about picking up my left foot.   

Even though my grandmother and aunt had Parkinson's disease (PD), and I was displaying the textbook early signs, I was flabbergasted at my own Parkinson’s diagnosis.  

I found a great doctor whose treatment was heavy on exercise, and light on medication. I went to a Moving Day, A Walk for Parkinson’s, event, where I met people who were just living their lives, incorporating Parkinson's into their planning and decision making, but not being ruled by it.  

I went to the World Parkinson's Conference and saw how many treatment options were available, or in development. I started medication, and continued to live my life, just with more pills and more exercise.   

In the years that followed, I put a lot of work into my wellness to prove to myself that this wasn't a death sentence. I continued to excel in my career, make friends, I dated, I bought my dream house, I met the love of my life, we adopted a puppy and got married.  

I'm retired now, to focus on my health, and spread the word that there is life after diagnosis. It's not easy, there are setbacks. I wish we as a community didn't have to do this. But with determination, pharmaceuticals and new technology, the future isn't as bleak as it may have seemed the day I was diagnosed. 

Young-onset Parkinson’s disease (YOPD) occurs in people younger than 50 years of age. Learn more.

Watch Rex's experience with the PD GENEration Testing and Counseling session below.

My PD Story

JR Rosania and group
People with PD

JR Rosania

I was born in 1959 and at an early age, I became athletic participating in swimming and basketball activities. I swam as a teenager. I did bodybuilding in my 20s and I completed triathlons from my 30s through 50s. I have completed 18 full Ironman Triathlons.  

JR Rosania Young

In 2022, I noticed a tremor in my right hand. I went to a neurologist and was diagnosed with Parkinson’s disease (PD). Slowly over the next 12 months it began its process of degenerative abilities.  

I needed hip surgery, which ended my running career. I couldn’t ride my bike because of instability issues (trouble with balance). I continue to lift weights and do stationary cardio activities.  

I have been a strength and wellness coach for the last 40+ years. As my ability to train for sports began to decrease, I found it rewarding to put more effort into training my athletes and clients. It’s been a couple years now and I am truly enjoying putting my effort into training clients.  

The Parkinson’s Foundation has helped me with resources and information, webinars, blog articles and podcasts. The material and information have been invaluable.  

My advice and my recommendation for anyone with PD is to not give up and keep moving. 

Find the Parkinson’s exercise that works for you! For virtual options, explore our Fitness Friday videos and events. For in-person classes, visit your local chapter’s webpage

My PD Story

Amy Chrest
People with PD

Amy Chrest

I am a wife, boy mom of two fantastic sons, a speech-language pathologist working in a large inpatient rehabilitation hospital, and a woman living with young-onset Parkinson's disease (YOPD).  

Amy Chrest & Husband selfie

I feel like I'm a bit of a unicorn at times, being a woman working in the medical setting with people who have neurological etiologies (some with PD) and having Parkinson's myself. Because of my professional career as a speech-language pathologist, I know what is coming my way with my own diagnosis of Parkinson's in terms of PD’s impact on speech, voice and swallowing.  

I can't unknow what I know; however, I am not scared nor deterred to keep on living my best life! 

I decided immediately upon receiving my diagnosis that I wanted to use my positivity, knowledge as a speech-language pathologist and personal experiences living with PD to help others. I immediately volunteered to enroll in a phase two clinical trial, which gave me a sense of some control over how I responded to my diagnosis and a sense of purpose.   

Beyond sharing my diagnosis initially with my immediate family, a handful of friends and co-workers, I kept my diagnosis "secret" or hidden out of fear. I was too afraid to let people know, especially at my place of employment. I was afraid others would question my skills and abilities having a progressively degenerative neurological disease, especially diagnosed in my 40s.   

However, as my symptoms progressed and became more visible, it was harder and more stressful for me to hide them. I would have to slow down, stop while walking due to painful dystonia, be cognizant that my arm was not swinging, and of course, recognize that the tremors in my fingers were progressing to my arm. I knew it was time to share my diagnosis publicly. 

Amy Chrest Keep Moving

I went nearly seven years without disclosing my diagnosis publicly and had no idea there was a whole online community of others with YOPD, including WOMEN!  

I work full-time and am a busy wife and mom… I had no time for social media and did not explore this way to connect with others until quite recently. After I publicly disclosed my diagnosis, I discovered this amazing online community of others living amazing lives with Parkinson’s, and felt like I'd found my people... I was not alone living with PD!   

Sharing my diagnosis with others has lifted a tremendous weight from my mind and body, allowing me to find community and no longer try to hide my symptoms. I've been met with compassion and my goal is to extend that love and my experience and knowledge to others. 

I recently began my journey as a Parkinson's Foundation Research Advocate and am an Ambassador, volunteering within my community. I can't wait to see what the future holds as I continue to serve as a Research Advocate, Ambassador and online advocate to inspire, educate and hopefully be a source of positivity for others living with Parkinson's and their families/caregivers. 

Explore our resources about young-onset Parkinson’s, Women & Parkinson’s, along with volunteer opportunities.   

Videos & Webinars

Expert Briefing: Communication Strategies for Optimal Success with PD

September 17, 2019

Conversation is the primary mechanism by which humans create and maintain relationships. Yet, in the context of Parkinson’s disease (and typical aging) changes in speech, facial expressions, cognition, voice, and hearing can interfere with communicating messages and creating meaningful connections in conversations between individuals with Parkinson’s disease and their partners. These changes significantly impact the perceived burden (social, emotional, physical) and practical aspects of living with Parkinson’s disease. Dr. Roberts will focus on the multidimensional nature of conversation difficulties in the context of living with Parkinson’s disease and will discuss communication strategies for optimizing successful conversation interactions.

Presenter

Angela Roberts, PhD
Roxelyn and Richard Pepper Department of Communication Sciences and Disorders
Northwestern University (Parkinson’s Foundation Center of Excellence)

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