My Life, My Plight, My Parkinson's: The Story of the Tin Man
I was diagnosed with young-onset Parkinson’s disease (YOPD) in 2015 — the same year I was immersed in my career as a Director and Executive Producer of NBC's "Last Call with Carson Daly." Like Dorothy at the start of her journey in The Wizard of Oz, I had no idea how drastically my life was about to change.
My career was soaring, yet just like Dorothy being swept into a tornado, my diagnosis upended everything I thought I knew about myself and my path.
It started with a slight tremor in my left hand and lingering stiffness — symptoms I dismissed as remnants of old rugby and snowboarding injuries. When they worsened, I sought help. An initial misdiagnosis of damaged neck discs gave way to the truth: Parkinson’s disease (PD), early-onset.
Unexpected and utterly life-altering. I felt like the Tin Man, frozen in place, unsure how to move forward. "We’re not in Kansas anymore," I thought. I kept the diagnosis private, needing time to process before sharing it with others.
Did you know the Parkinson's Foundation designates medical centers that provide high-quality Parkinson's Care? Explore our Global Care Network.
Fear crept into every part of my life. Parkinson’s relentless progression felt like it was stripping away pieces of me, leaving me rusted and stuck. I’d tell others, “I’m not afraid of dying—I’m afraid of living with Parkinson’s.” Yet this thought anchored me, pushing me to fight for the life I still wanted. After failed treatments, I finally found proper care with the exceptional neurology team at Columbia University, a Parkinson’s Foundation Center of Excellence, where I was placed on a path to deep brain stimulation (DBS).
In 2023, the first DBS surgery targeted my brain’s right side, calming the severe symptoms on the left side of my body. The results were transformative, significantly reducing my reliance on medication and restoring pieces of my life.
A second surgery in 2024 further stabilized me, targeting the left side of my brain to address symptoms on the right side of my body, which had begun progressing. Much like the Tin Man getting his oil, these surgeries didn’t just ease symptoms — they brought me real hope. For the first time in years, I felt like my heart was back.
Although life-changing treatment brought hope, there were still obstacles impacting my professional creative sanctuary, yet I remained determined not to let Parkinson's win. I poured my passion into meaningful projects like co-executive producing CBS’s “Angels of Hope,” a successful fundraiser to combat homelessness. Collaborating with nonprofits like the Global Lyme Alliance gave me purpose and fulfillment. I began sharing my story at Columbia and Stony Brook Universities, hoping to inspire others.
As a proud brand ambassador for Abbott Technologies, I advocate for the life-changing benefits of DBS. Like the Tin Man, who needed oil to move, I rely on medication to function — but I’ve regained hope and purpose.
The unwavering love and support of my girlfriend and daughter reminded me that I am more than my diagnosis. Gratitude became my armor, empowering me to move forward. Living with Parkinson’s has taught me resilience, purpose and the understanding that life beyond a diagnosis is still full of endless possibility. Like Dorothy, I discovered there’s truly no place like home — and there’s no greater journey than finding your heart again.
Looking to build your support network? Explore our In Your Area feature on our website or call our Helpline at 1-800-4PD-INFO (1-800-473-4636) for your nearest support groups and exercise classes.
Watch our webinar A Deep Dive into Deep Brain Stimulation, sponsored by Abbott:
Everything can change so quickly. Even though I worked in the healthcare industry, finding out my husband Bill had Parkinson’s disease (PD) was still an overwhelming experience. I had to have faith that we could do this.
The hospital I worked at didn’t have a Parkinson’s program, so I researched movement disorders specialists (neurologists with additional training in Parkinson’s) on my own. The specialist that was recommended to me had a very long wait time for new patients, but I was determined to get my husband in as soon as possible. I called daily to ask about cancellations. My persistence paid off and we got an appointment a month later.
Bill is a fighter; he started exercising more, going to the gym, doing rock climbing and Rock Steady Boxing. We began engaging with the Parkinson’s community right away.
We joined a local support group, including one specifically for people with Parkinson’s and caregivers. I volunteered for the Parkinson’s Foundation as an ambassador. We were building ourselves a community that we continue to lean on every day.
Being the spouse of a person with PD is hard. While you inevitably learn how to navigate this disease, you must also make and take time for yourself. Bill and I went to support groups where the caregivers broke off to meet separately — and this was a gift. It felt great to talk with other spouses who were dealing with the same things as me. Twelve years later, I continue to facilitate monthly meetings with a caregiver’s group locally.
As Bill’s Parkinson’s symptoms continued to get worse, we started looking at deep brain stimulation (DBS) as an option. One of our friends with similar symptoms had success with the procedure, so we asked Bill’s neurologist if it would be an option for him. I did my research, but ultimately, it was Bill’s decision. I’m glad he had the support he needed to make it.
"After getting DBS, it felt like we started living again."
Today, Bill goes out with friends, visits with the grandkids and plays cards at the American Legion twice a week. I’m able to do the things I enjoy as well. We remain active in the Parkinson’s community and joined Abbott’s DBS Patient Ambassador Program. As part of the program, we speak to patients and caregivers about how the procedure has allowed us to move forward.
We have built a community of family and friends and today, it’s my turn to lean into it. As I deal with my own personal health struggles, I feel comfort in knowing that we have built the support system we need to get through this too. I have faith that we have all the pieces in place to get to the other side of this too.
It’s times like these that I keep this Beatles song close to my heart. “I get by with a little help from my friends… I’m gonna try with a little help from my friends.”
Ready to build your Parkinson’s community? Explore our In Your Area feature on our website or call our Helpline at 1-800-4PD-INFO (1-800-473-4636) for your nearest support groups and exercise classes.
Watch our webinar A Deep Dive into Deep Brain Stimulation, sponsored by Abbott:
I was diagnosed with Parkinson’s disease (PD) the day after my third child was born. I was 38 years old and running our family home building business. Initially, my wife and I decided to keep this news between us. I didn’t want my diagnosis to hurt the business. Besides, we had three kids under four.
People would think Parkinson’s is why I was tired and distracted. The medications worked on a lot of the symptoms, but there were some tells. I used the medications when I knew I would be around people, but at home I was under medicating.
A few months into my diagnosis, I was prescribed big therapy. Pretty quickly, the therapist said this isn’t for you. At my age and stage of the disease, he felt I needed something more challenging and introduced me to a former patient who was skiing in Vermont, rock-climbing and organizing cycling trips in the Rockies.
I joined him and one other person for a rock-climbing session. It challenged my body and my Parkinson’s in helpful ways. It was a rush — I was hooked. The group grew, we called ourselves the “Shaky Six.” Today the group is part of UpENDing Parkinson’s, which is comprised of over 400 climbers across more than 25 gyms nationwide. But that’s a story for another day.
Explore our resources for Employment with Parkinson's: Working it Out.
As my Parkinson’s progressed, I felt it was time to start sharing my diagnosis with my friends and colleagues. Looking back, I had nothing to be nervous about but at that time, I had concerns. Would I lose friends? Would I lose customers or the confidence of my employees at my homebuilding business?
I flew out to Kansas City to tell my best friend. He was great. In fact, the very next time I visited him, we attended Kansas City Moving Day together. At work, the response basically restored my faith in humanity. Competitors showed me grace and people really showed up for me; I do not take that for granted.
I think from a business perspective, having this disease has been good. I have to try to think ahead since I don’t know how I will progress. I know it’s a well-run business. As the owner, I want to be indispensable, but if I’m doing it right, I can be dispensable. It’s humbling to say, but it’s true.
Five years in, I needed to increase my medications. I was useless between 1 p.m. and 5 p.m. I was taking 20% less medicine than I should have, which was already about 50% of the maximum daily dose. Was I already running out of runway? After only five years? That changed my thinking and I started looking at deep brain stimulation (DBS) as a treatment option.
Yes, it was brain surgery. Yes, I had a lot of questions, but I felt confident going in. After the procedure I reduced my meds by about 70%. I have also found that my body is receptive to this treatment. I adjust myself about 30 times a day. When I do it right, it helps me get over the slump or under the hump.
There are different settings I use for different activities — climbing, walking, driving, typing, general being. The near-instant response time is a godsend. I don’t have to predict how my meds now will impact my symptoms in an hour.
It’s been six years since my DBS implant. I’m taking more meds now but still less than before DBS. That’s the nature of this disease. Sometimes people ask if I should have gotten DBS sooner, but for me the timing was right. Sometimes you need to get through the bad to get to the good. When you get worse before you get better, you appreciate the better so much more.
Las dificultades para hablar y tragar (deglución) son frecuentes en la enfermedad de Parkinson (EP) y pueden impactar aspectos importantes de la vida, como disfrutar de alimentos favoritos o participar en conversaciones con familiares y amigos. La evaluación y el tratamiento tempranos de estos problemas pueden mejorar la calidad de vida y ayudar a evitar complicaciones más graves en el futuro.
Puntos clave
La EP hace que los movimientos se vuelvan más pequeños y lentos con el tiempo, lo que puede afectar cómo se mueven la cara, la boca, la garganta y el pecho al hablar y tragar.
La EP afecta la comunicación entre el cerebro y el cuerpo. Esto puede dificultar que uno note cambios en el habla y la deglución.
Trabajar con un terapeuta o patólogo del habla y el lenguaje puede mejorar los problemas para hablar, comunicarse y tragar en la EP.
Problemas para hablar en el Parkinson
Los cambios en la voz y el habla son signos tempranos comunes de la EP. Entre las dificultades frecuentes están el habla suave, la voz monótona, las palabras arrastradas y el desafío de encontrar las palabras adecuadas o empezar una frase. Una expresión facial limitada también puede conducir a problemas de comunicación.
¿Tengo problemas para hablar?
¿Les cuesta a los demás oírme o entenderme?
¿Evito las llamadas telefónicas?
¿Debo esforzarme para que me oigan o se me cansa la voz rápido?
¿Pierdo el hilo de mis ideas con frecuencia?
¿Me cuesta encontrar las palabras adecuadas?
¿Me siento excluido de las conversaciones?
Problemas de deglución en el Parkinson
Muchas personas con la EP tienen alguna dificultad para tragar (disfagia). Los problemas pueden ser leves, como tardar más en comer o tener problemas para tomar pastillas, o graves, como pérdida de peso, atragantamiento o neumonía por aspiración (una infección infección potencialmente mortal debida a la entrada de alimentos o líquidos en los pulmones).
Otra preocupación frecuente es tener demasiada saliva. Esto no ocurre porque el cuerpo produzca un exceso de saliva, sino porque la EP puede hacer que tragar sea menos automático.
¿Tengo problemas al tragar?
¿La comida o las pastillas se me quedan atascadas?
¿Necesito despejarme la garganta a menudo al beber o comer?
¿Tardo más en comer que los demás?
¿He adelgazado sin intentarlo?
¿Siento que tengo demasiada saliva?
¿Tengo acidez estomacal o dolor de garganta?
¿Cómo se tratan los problemas del habla y la deglución?
El principal tratamiento es trabajar con un terapeuta del habla y el lenguaje. Algunos terapeutas se especializan en condiciones neurológicas. Ajustar la medicación para la EP también puede ayudar, especialmente si los problemas ocurren durante los periodos de "off".
¿Cómo se evalúan los problemas del habla y la deglución?
Un terapeuta del habla y el lenguaje empezará por elaborar un historial médico y evaluar cómo mueve usted su cara, labios, lengua y mandíbula, y cómo habla y traga. Si tiene problemas para tragar, le preguntará sobre esto. Puede realizarle pruebas como un examen videofluoroscópico o una evaluación endoscópica con fibra óptica para obtener más información.
¿Qué incluirá una sesión de terapia del habla o la deglución?
La EP afecta a cada persona de forma diferente, por lo que su plan terapéutico debe adaptarse a sus síntomas y metas específicas.
El terapeuta del habla y el lenguaje le dará ejercicios y estrategias para hablar con más claridad, fortalecer los músculos y mejorar la comunicación. A veces, puede recomendarse un dispositivo para ayudar a aumentar el volumen de la voz.
La terapia para la deglución se centra en fortalecer los músculos que se usan para respirar, toser y tragar. También pueden recomendarse cambios en la dieta y métodos más seguros para comer y beber.
Se recomienda una reevaluación y ajustes cada pocos años.
Los estudios demuestran que hablar y tragar mejoran más rápidamente con la práctica regular en casa. Cantar puede ser una forma divertida de practicar y puede potenciar el control de la respiración y la fuerza vocal. Busque oportunidades de coro en grupos de apoyo para la EP o en centros comunitarios locales.
¿Cómo puedo encontrar un terapeuta del habla y el lenguaje?
Pida a su médico que lo mande con un especialista o comuníquese a nuestra Línea de Ayuda. Programas como LSVT LOUD y Parkinson Voice Project SPEAK OUT! se centran en los desafíos del habla en la EP y ofrecen directorios en línea para ayudarle a encontrar terapeutas especializados.
Consejos para hablar más alto y claro
Respire antes de hablar.
Hable más alto de lo le resulte natural.
Organice sus ideas antes de hablar.
Practique su voz alta a diario.
Consejos par tragar con más seguridad
Reduzca las distracciones durante las comidas.
Procure masticar bien los alimentos.
Concéntrese en tragar fuerte al comer.
Hable con su médico si tiene dificultades para tomar pastillas.
Consejos para cuidadores
Trate de estar en la misma habitación y cara a cara cuando se comunique.
Deje más tiempo para que la persona con la EP responda.
Raise Awareness
How to Manage Chronic Conditions Through Parkinson’s Stages
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:
Cómo controlar las afecciones crónicas a través de las etapas del Parkinson
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:
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.
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
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.
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
Ana Molano, terapeuta del habla y el lenguaje certificada, especialista clínica en voz y deglución, terapeuta bilingüe originaria de Bogotá, Colombia, se especializa en el tratamiento de los trastornos de la voz, la deglución y las vías respiratorias. Ana, que habla inglés y español con fluidez, se dedica a mejorar la vida de las personas a las que atiende a través de su experiencia clínica y sus contribuciones al campo de la patología del habla y el lenguaje.
Su trayectoria profesional la ha llevado a trabajar en diversos entornos hospitalarios, como rehabilitación de agudos, cuidados intensivos neonatales e instalaciones ambulatorias.
Comprometida con la práctica basada en la evidencia, Ana emplea estrategias integrales de rehabilitación para garantizar una atención óptima a sus pacientes.
Actualmente, Ana Molano es directora de operaciones de Voice Rehab y combina la práctica clínica con el liderazgo para mejorar la atención al paciente e impulsar soluciones terapéuticas innovadoras. Como presidenta de la Foundation for Voice and Swallow Wellness, Ana aboga por la concientización y la educación en este ámbito. Apasionada por mejorar la calidad de vida de las personas con problemas de comunicación y deglución, Ana está comprometida con el avance de la investigación y el fomento al apoyo comunitario.
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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.”
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.
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.
4. Talking to children and grandchildren about Parkinson’s.
Drawing on the experiences of many PD families, children and grandchildren can have a wide-swinging variety feelings about their parent or grandparent having Parkinson’s. The information you choose to share will likely change as they mature and are able to understand more aspects of Parkinson’s.
The good news is that children often adjust well to a loved one’s diagnosis of PD. Giving children a better understanding of Parkinson's can lessen their fear and anxiety about the disease. When you see children at a family gathering, consider:
Talking to them for a few minutes, providing them with general information about Parkinson’s. For instance, you can share that Parkinson’s is a disease that makes it harder for your body to move, and they notice your symptoms. Share what you do to manage them.
Using language that is understandable and concrete to your child.
Finding a way to allow the child to help and be involved. For instance, they can get you water, help you exercise your brain by playing a game or go on a walk with you.
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.
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.
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.
