My PD Story

Craig Meurlin headshot
People with PD

Craig Meurlin

My father was diagnosed with Parkinson’s disease (PD) in the mid-to-late 90s and he lived with PD until his passing in 2012. I was diagnosed with PD in 2019, and I was quickly frustrated that I was being given the same drug for PD my father had used 30 years ago.  

It seemed an inordinately long time to not have progressed more with treatments and drugs. Certainly, there were some advances to treat Parkinson’s symptoms, like deep brain stimulation (DBS), but it all seemed to circle back to the primary PD drug carbidopa-levodopa. 

As I navigated this reality, and my Parkinson’s symptoms, I eventually connected with the Parkinson’s Foundation. I appreciated that the Foundation’s resources made clear that Parkinson’s is not just a movement disorder. Some neurologists I have dealt with don’t seem to care as much about the non-movement symptoms, and I have those in spades (and had them for a number of years before my actual PD diagnosis).  

Learning about how PD impacts so many systems in my body and how common these non-movement symptoms are through the Foundation has been helpful and is just one part of the personalized approach the Foundation does so wonderfully. That personalized approach is why I began to financially support the Foundation. 

What meaningfully differentiated the Parkinson’s Foundation from the other PD charities in my mind was when I learned about the Foundation’s Parkinson’s Virtual Biotech initiative. I truly became excited as it seemed to me to be an optimal approach to accelerate research on developing new treatment options as well as finding the cause of PD. The usual institutional approach has not seemed, to me at least, to have made the kind of progress needed, particularly considering the significant increase in the number of people being diagnosed with PD.  

Real, original research and development often occurs through the efforts of individuals who do not accept the status quo and believe enough in their own work to take the risks (and those risks are significant) of stepping out on their own to accelerate the development of their ideas. Things can get caught up in the bureaucracy of larger institutions (and, in some institutions, perhaps “group think”) that dampens both the creativity and speed of innovation needed for truly breakthrough developments.  

I was looking for something to support that was nimbler and led by people with real passion and belief in their own work, and I found it in the Parkinson’s Virtual Biotech initiative. The initiative’s combination of science and private entrepreneurialism is an excellent way to accelerate advances in applied research and development. Through this initiative, the Foundation makes venture capital investments in early-stage companies focused on PD research and development.   

Additionally, the Parkinson’s Virtual Biotech uses an investment model I am familiar with and have seen work successfully a number of times throughout my 40-year career as a corporate lawyer with a particular focus in securities law.  

I know the various stages of the venture capital process, the need to do significant technical due diligence and to properly evaluate a company’s management team to be comfortable with their ability to develop and follow through on a business plan to achieve the scientific and commercial objectives of the project.   

I like the fact that Parkinson’s Virtual Biotech investments in a company are made in stages based on the company’s achievement of certain milestones. The Parkinson’s Foundation and Parkinson’s UK have the resources to do that due diligence and keep the focus on Parkinson’s disease. They also mentor the management teams when necessary to assist in their success.  

I believe that through the Parkinson’s Virtual Biotech, the Parkinson’s Foundation can make a real difference in efforts to advance treatment options and ultimately cure Parkinson’s disease. Where else can you find the expertise (both in PD and in venture capital investments) found in the Parkinson’s Foundation and Parkinson’s UK, the access to many investment opportunities that are brought to this initiative and the management mentoring to move these projects forward?  I am unaware of other PD focused organizations doing this and it is something that I am very passionate about supporting it. 

I believe this model has the best chance to work for Parkinson’s and to make leaps of progress that are important if we hope to slow disease progression, eventually stop other people from getting it and finally learn what causes Parkinson’s disease. I would encourage anyone to join me in supporting the Parkinson’s Virtual Biotech initiative. 

Learn more about Parkinson’s Virtual Biotech and make a gift to support this exciting work. 

My PD Story

Ron and Amy McConnell posing for a selfie
Family Members

Ron & Amy McConnell

Our names are Ron and Amy, and we were first impacted by Parkinson’s disease upon Ron’s diagnosis in 2017. As a couple, we have truly walked through the “highs and lows” of this disease and understand the significant role it can play in daily life.  

Ron McConnell in hospital bed holding a sign with Amy McConnell next to him

Ron began to develop symptoms after a tragic accident at work and was misdiagnosed for years — it took several failed attempts by medical professionals to determine the true cause behind the tremors, falling, and pounding headaches.  

After numerous doctors visits, Ron was finally referred to a movement disorders specialist, who conducted a comprehensive clinical evaluation. Ultimately, a DaTscan revealed a severe dopamine deficiency, confirming his Parkinson’s diagnosis. 

Following Ron’s diagnosis, he was prescribed Parkinson’s medications and our lives improved dramatically. In the years that followed, it was a relief to see symptoms subside through proper treatment and medication management. Amy is a “super caretaker” who helps us both navigate life with Parkinson’s disease. We are truly a team! 

Unfortunately, we experienced an unthinkable hospital stay in 2023 after Ron developed a severe case of Covid-19. Prior to Ron’s emergency visit, we armed ourselves with his medications and Parkinson’s Foundation resources.  

When we arrived, we requested that these be scanned into his electronic chart, knowing that it was essential that the medical team understood Ron’s diagnosis and the importance of administering his Parkinson’s medications in a timely manner. Despite being assured that Ron’s chart had been updated, we learned later that this had not been the case —– the medical team was unaware of his Parkinson’s. 

As a result, Ron developed aspiration pneumonia and was even placed on a ventilator. He continued not to receive any PD medications. Despite Amy’s pleading, the medical team refused, and for the first time, Ron began to experience dyskinesia, a Parkinson’s symptom that culminated in a bad fall at the hospital. After days without medication, his condition worsened, leading to respiratory failure. It was truly a life-or-death situation. 

Finally, a new doctor saw Ron and took the time to listen to Amy. He agreed to administer Parkinson’s medications and stuck close for several days throughout the recovery period. In the end, the doctor declared that we had made him an even better doctor, as he read through the resources Amy provided (like the Parkinson’s Foundation Hospital Safety Guide).  

While we would never choose to relive this distressing experience, we are now passionate advocates for hospital safety in people with Parkinson’s and care tremendously about educating others.  

What We Want People with PD and Care Partners to Know

Our experience has reinforced that knowledge is power. Patients and caregivers must be proactive and persistent in advocating for their needs. The Parkinson’s Foundation’s Hospital Safety Guide was instrumental in helping us navigate this crisis, and it has become a core part of our advocacy efforts. 

Another crucial takeaway is the importance of the care partner. Amy’s advocacy made a profound difference in ensuring Ron’s needs were eventually met. In addition, we learned how critical it is to ensure accurate patient records, as errors and omissions in Ron’s medical records significantly impacted his care and delayed proper treatment. 

As Parkinson’s Foundation Ambassadors, we have shared our story with hospital administration teams, and we’re proud that our advocacy has already led to positive changes in hospital policies and protocols. 

We are honored to share our journey and hope that our experiences help others navigate similar challenges. 

Our biggest piece of advice is to prepare yourself prior to a hospital stay. Do not be afraid to share information and resources from the Parkinson’s Foundation with the medical team. Keep positive, and never lose hope! 

Advocate for your best care with the Hospital Safety Guide. Learn more and download the guide now. 

Podcasts

Episode 176: Allied Health Spotlight: The Challenges of Speech and Swallowing Issues

Allied health professionals are a group of healthcare providers whose role and expertise complement the work of physicians. These include specialists such as physical and occupational therapists, speech-language pathologists, nutritionists, and many more. They are just as important as your Movement Disorders Specialists and Neurologists, and play a vital role in creating a comprehensive, well-rounded Parkinson’s care team that caters to your individual needs and addresses your overall well-being.

In this second episode of our Allied Health Spotlight series, we highlight the benefits of working with a speech-language pathologist early on in your Parkinson’s journey. Parkinson’s disease (PD) affects movement throughout the body, including the face, mouth, throat, and breathing muscles. As the disease progresses, people with PD may develop problems with speaking and swallowing. This can not only impact eating habits, but can also lead to soft voice and drooling, making conversations during social gatherings uncomfortable. 

In this episode, Melissa Grassia Chisholm, MS, CCC-SLP, a licensed speech pathologist and a voice-swallow airway expert, explains how speech and swallowing problems can develop in people with PD.  She also discusses different diagnostic procedures, therapies, and programs that can help improve speech and swallowing.

Released: February 11, 2025

We want to thank this episode's podcast sponsors, UCB and Novartis, for supporting our mission. 

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What People with Parkinson’s Want Health Professionals to Understand

Woman talking to a doctor

Finding care for Parkinson’s disease (PD) can be difficult due to a shortage in specialized care, especially for those who live in rural areas. There are one million Americans living with Parkinson’s and only 660 movement disorder specialists currently practicing in the U.S.  

With limited access to movement disorders specialists, most people with PD find themselves visiting a general neurologist or primary healthcare provider for their Parkinson’s care. However, across all care settings, people with PD report feeling their healthcare providers may not fully grasp the intricacies and daily challenges that come with Parkinson’s.   
 
The Parkinson’s Foundation is dedicated to educating and training our professionals about best practices in quality PD care. Yet, nobody understands the daily challenges of living with Parkinson’s better than those living with it.  

We asked people with Parkinson’s on our social media channels what they wish health professionals understood about living with PD. This is what they said: 

“I wish doctors would be more understanding that Parkinson's also affects their ability to process things sometimes. My dad would appear to be ‘thinking' about what the doctors said, but he was really struggling to understand what exactly was being said.” - Dawn    

Some people with PD experience cognitive impairment that results in slowness of memory and thinking. Symptoms of cognitive impairment may not always be noticeable. However, this can influence the way people with PD understand information and may leave them feeling confused or overwhelmed. 

“I wish they understood there are a lot of non-motor symptoms — hypotension, constipation, mood disorders, cognitive issues, etc. These need to be considered and monitored during regular appointments as well as those with their movement disorder specialists.” - Deanna 

While non-movement symptoms are invisible, it's important to realize that they are common and many people with Parkinson’s find them more troublesome and disabling than movement symptoms. 

“Healthcare professionals need to address mental health issues that can be caused by Parkinson’s itself.” -Leann 

Mental health changes, like depression, anxiety and apathy are part of Parkinson's itself, resulting from PD-related changes in brain chemistry. Treating these symptoms is one of the most significant ways to improve quality of life for people living with Parkinson’s.  

“This disease is very complex, not just a movement disorder. It affects your brain, your confidence, your sense of self, and there are day-to-day changes.”  -Michele 

Finding a mental health counselor is a step towards bettering your mental health and wellbeing. The counselor you partner with should make you feel safe and validated while helping you navigate life with PD.  

“They should combine medical care with social worker care. Don't tell someone their life is about to radically change but provide nowhere to start or available services.” -Lee 

Building a care team that is well-versed in PD will help guide you and improve your quality of life. People living with Parkinson's benefit most from a comprehensive, team-based healthcare approach. The Parkinson's Foundation promotes an allied health team approach across our Global Care Network.  

“I wish they would believe patients and their caretakers when they mention symptoms or other issues.” -Lindsey 

A 2022 poll from Mitre-Harris found that 52% of individuals in the U.S. feel their symptoms are “ignored, dismissed, or not believed” when seeking medical treatment. That number rises to 60% within the Hispanic community.    

“They need to know the importance of taking medication at the right time when in the hospital. It was a nightmare trying to ensure that my mother got her medications on time.” - Roisin 

People with Parkinson’s need to take their medication at the same time daily to avoid “off times,” periods of time when the effect of levodopa medication wears off, causing a return of motor or non-motor symptoms. This is especially important for healthcare providers in hospitals to recognize, as they are more likely to be distributing daily medication. Our Hospital Safety Guide is designed to help people with PD and their care partners advocate for high-quality care in the hospital. 

Download Free Resources

The Hospital Safety Guide is filled with useful tools and information to help a person with Parkinson’s during their next hospital visit, planned or unplanned. Print these resources when you have used the copies within your guide, or share additional copies with care partners and loved ones.

DOWNLOAD NOW

“In general, healthcare professionals should understand more about the signs which indicate someone has Parkinson’s. Internists, even neurologists often miss the signs. We need better education for a heightened awareness of the many early symptoms of PD. Not everyone shows up with tremor.” -Donna 

Learn how to recognize ten early signs of Parkinson’s in this fact sheet. 

“Refer early for speech and swallowing changes!” -Julia 

Addressing Parkinson’s symptoms early, such as speech and swallowing changes, is extremely important. Without intervention, swallowing difficulties can be especially dangerous.  

“We are all very different, and whatever they learned in a book or heard from their last patient may not apply to me. Everything we tell our doctors pales in comparison to what we go through most days. We aren’t liars or exaggerating; we need a little relief.” -Esther 

All people with PD deserve to receive proper care. Our PD stories allow people to share their stories and advocate for themselves. You can share your story here. 

For Health Professionals 

The Parkinson’s Foundation is here to help health professionals provide quality Parkinson’s care to their patients living with this disease. Explore our many resources for health professionals, including accredited online courses. Visit Parkinson.org/Care to learn more about our care priorities and programs.   

If you or a loved one is looking for Parkinson’s expert referrals, contact our Helpline at 1-800-4PD-INFO (1-800-473-4636). 

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Herramientas para abordar las alteraciones del pensamiento y la memoria en la EP

Women sitting on couch in pain

A medida que envejecemos, nuestra habilidad de pensamiento cambia. Los cambios cognitivos también pueden aparecer en la enfermedad de Parkinson (EP), incluyendo pensamiento más lento, olvidos, falta de concentración y, en ocasiones, pérdida de memoria. En este artículo, aprenda estrategias prácticas para reducir el riesgo de alteraciones del pensamiento y mejorar la salud cognitiva y descubra las terapias disponibles para los trastornos cognitivos. 

El siguiente artículo se basa en una Charla con expertos de la Parkinson’s Foundation (Expert Briefings) acerca de las alteraciones del pensamiento y la memoria en la EP, con el Dr. Gregory Pontone, médico con maestría en ciencias de la salud, de la Facultad de Medicina de la University of Florida, un Centro de Excelencia de la Parkinson’s Foundation. 

Envejecimiento y cognición 

Algunos procesos del pensamiento se conservan bien a medida que envejecemos, incluyendo:  

  • El vocabulario y los conocimientos generales. 

  • Las competencias lingüísticas. 

  • Recordar cómo se hacen las cosas, como andar en bicicleta o cocinar pasta (memoria procedimental), el nombre del presidente o de un vecino (memoria semántica). 

  • La capacidad de comprender lo que vemos.  

Los cambios en cualquiera de estas capacidades antes de los 70 años podrían estar relacionados con la EP u otra enfermedad asociada al envejecimiento. A medida que una persona se acerca a los 70 años, la edad o el Parkinson pueden influir en: 

  • La capacidad de retener información a corto plazo mientras se concentra en otra tarea (memoria funcional). 

  • Planificar, organizar y realizar tareas (función ejecutiva). 

  • Atención focalizada y dividida. 

  • La rapidez con la que el cerebro comprende y responde a la información. 

Reconocer los cambios cognitivos en la EP 

Muchas personas con Parkinson pueden experimentar cierto grado de alteraciones del pensamiento. Estos cambios suelen progresar gradualmente junto con los síntomas motores. El deterioro cognitivo leve (DCL o MCI, por sus siglas en inglés) describe alteraciones de la memoria o del pensamiento que no afectan la vida cotidiana. Las personas con la enfermedad de Parkinson de inicio temprano —aquellas que desarrollan síntomas antes de los 50 años— suelen experimentar cambios cognitivos más leves y lentos relacionados con la EP.  

En algunas personas con Parkinson, el cambio cognitivo progresivo puede conducir a la demencia de la EP (DEP), un deterioro más grave del pensamiento. A veces, la persona se da cuenta de que su memoria está fallando, pero otras veces son las personas más cercanas quienes reconocen los signos. El deterioro cognitivo en la EP puede afectar:  

  • La realización de tareas, como organizar medicamentos o utilizar un control remoto.   

  • Las habilidades lingüísticas y de búsqueda de palabras, que afectan la capacidad de seguir instrucciones o participar en conversaciones. 

  • La memoria, que hace que la persona repita preguntas, olvide información importante o tenga problemas para aprender información nueva. 

  • El juicio, que lleva a que la persona ignore riesgos o tome malas decisiones. 

  • La orientación de tiempo y lugar; una persona con problemas del pensamiento puede perderse, especialmente en lugares conocidos. 

Las dificultades de memoria en la EP vs. la enfermedad de Alzheimer 

Los médicos utilizan la Evaluación Cognitiva de Montreal (MoCA, por sus siglas en inglés) como herramienta de detección de alteraciones del pensamiento. Puede distinguir entre tipos de disfunción de la memoria. 

El deterioro de la memoria relacionado con la EP difiere de la enfermedad de Alzheimer. Una buena parte de la memoria de reconocimiento —la capacidad de recordar cosas que uno se ha encontrado antes— permanece prácticamente intacta para la mayoría de las personas con Parkinson. Las personas con Parkinson pueden tener un poco de dificultad para buscar y recuperar un recuerdo, pero con una pista o tiempo suficiente, pueden recordarlo. Por lo general, una persona con Alzheimer es incapaz de crear o recuperar nuevos recuerdos.  

La demencia por la EP, la demencia con cuerpos de Lewy y la enfermedad de Alzheimer están asociadas a proteínas plegadas anormalmente que forman grumos pegajosos que dañan la salud cerebral. Los cuerpos de Lewy son cúmulos tóxicos de proteína alfa-sinucleína que se acumulan en el cerebro.  

Un fallo de la memoria al principio de la EP o un fallo similar al del Alzheimer podrían indicar que la persona con Parkinson también podría tener Alzheimer.  

Posibles descubrimientos

Una comprensión más profunda del complejo funcionamiento de la EP puede mejorar el tratamiento y la atención. Actualmente, los investigadores pueden ver los cúmulos tóxicos asociados a los problemas de memoria mediante técnicas de imagenología. Los científicos confían en que los avances tecnológicos pronto permitan examinar más de cerca la proteína alfa-sinucleína mal plegada.  

La terapia de infusión de anticuerpos puede eliminar el amiloide del cerebro de las personas con la enfermedad de Alzheimer en fase inicial. La esperanza es que las infusiones ralenticen la progresión de la enfermedad. Las futuras terapias para el Parkinson podrían inhibir el mal plegamiento de la proteína alfa-sinucleína para minimizar la formación de cuerpos de Lewy o, posiblemente, incluso eliminar la alfa-sinucleína anormal.  

Herramientas para mejorar la cognición hoy

Al navegar por las etapas y los síntomas del Parkinson, la búsqueda del bienestar puede tener un profundo impacto.  

1. Muévase.

Los beneficios del ejercicio aeróbico en el Parkinson son poderosos. Ya sea que nade, camine o haga otro ejercicio de intensidad moderada, hacer ejercicio 150 minutos por semana puede mejorar la estabilidad y el equilibrio, disminuir el riesgo de caídas, reducir la depresión y beneficiar directamente la cognición en la EP, mejorando: 

  • La atención 

  • La velocidad de procesamiento 

  • El tiempo de reacción 

  • La función ejecutiva 

  • El lenguaje 

El entrenamiento de resistencia —utilizando el peso corporal, pesas o ligas— también puede ser beneficioso para la cognición, el equilibrio, la marcha y la densidad ósea, al tiempo que reduce el riesgo de fracturas en la EP. El entrenamiento de resistencia también mejora la función ejecutiva y la atención.  

2. Practique la atención plena.

Un estudio de 2004 observó cómo 20 personas con Parkinson de leve a moderado y 10 personas que no tenían la EP realizaban una tarea a medida que se añadían grados de complejidad. 

Los investigadores descubrieron que, mientras que el aumento de la atención requerida contribuía a las alteraciones del desempeño y de la marcha en todos los participantes, las personas con Parkinson se volvían aún más lentas. Practicar la atención plena, centrarse en una sola cosa a la vez y bloquear las distracciones, puede ayudarle a funcionar de forma óptima con Parkinson. 

3. Siga una dieta nutritiva.

La dieta MIND (Mediterranean-DASH Intervention for Neurodegenerative Delay), una combinación de la dieta mediterránea y DASH (método dietético para detener la hipertensión, por sus siglas en inglés) para retrasar la degeneración neuronal, es una dieta basada en evidencia para la salud neurológica.

Las recomendaciones incluyen comer: 

  • Al menos 3 raciones de cereales integrales al día. 

  • Una ración diaria mínima de una ensalada de hojas verde oscuro y una ración de verduras. 

  • Al menos 30 gramos de frutos secos al día. 

  • Frijoles o legumbres al menos cada dos días. 

  • Bayas (berries) al menos dos veces por semana. 

  • Aves de corral al menos dos veces por semana. 

  • Pescado al menos una vez a la semana. 

Y limitar:   

  • Mantequilla o margarina a no más de una cucharada sopera al día (utilice en su lugar aceite de oliva). 

  • Queso, alimentos fritos o comida rápida a no más de una vez por semana. 

  • Bollería o dulces a menos de cinco veces por semana. 

4. Duerma lo suficiente.

El sueño de calidad desempeña un papel en la creación y recuperación de recuerdos y puede eliminar algunas de las proteínas anormales asociadas a la pérdida de memoria. También ayuda al cuerpo a reflejar los beneficios del ejercicio.  

Los cambios y síntomas cerebrales relacionados con la EP pueden alterar el sueño. Practicar conductas que lo pongan en el estado óptimo para relajarse puede ayudarle a conciliar el sueño y a permanecer dormido. Una rutina de sueño saludable incluye: 

  • Un horario regular para dormir y despertar (intente reservar al menos 8 horas) 

  • Un dormitorio tranquilo y en penumbra 

  • Tiempo de pantalla mínimo 

Hable con su médico acerca de problemas de sueño o inquietudes al respecto. Pueden trabajar en conjunto para encontrar las mejores herramientas para tratar sus síntomas. 

5. Manténgase conectado socialmente.

Encontrar y establecer relaciones sociales saludables beneficia al cerebro y al cuerpo. Busque recursos comunitarios como punto de partida; por ejemplo, clases de ejercicio, actividades artísticas, grupos de apoyo u oportunidades de voluntariado. Las visitas a domicilio, las llamadas telefónicas o los programas en línea pueden beneficiar a quienes tienen dificultades para salir. 

El aislamiento social y la soledad pueden ser peligrosos.  

  • El aislamiento social se asocia a un aumento de 50% del riesgo de demencia y aumenta significativamente el riesgo de muerte prematura, a niveles de los riesgos del tabaquismo, la obesidad y la inactividad física.  

  • Las investigaciones demuestran que el aislamiento aumenta el riesgo de cardiopatías y accidentes cerebrovasculares en torno a un 30%. 

La soledad puede aumentar la ansiedad, la depresión, la confusión, las delusiones, los problemas de memoria y comunicación y puede afectar la capacidad para resolver problemas. El aislamiento también aumenta la tensión del cuidador, que puede llevar al agotamiento.  

6. Explore el tratamiento.

Su médico puede recomendarle que trabaje con un neuropsicólogo o un terapeuta del habla y el lenguaje especialmente preparados, que pueden ofrecerle formas de compensar los problemas de memoria o pensamiento. 

Algunos medicamentos recetados también pueden mejorar los síntomas de la demencia por la EP. Los inhibidores de la acetilcolinesterasa potencian la acetilcolina (una sustancia química importante para la memoria entre otras cosas) en el cerebro. Entre ellos se encuentran la rivastigmina (el único medicamento para la PEP aprobado por la FDA), el donepezilo y la galantamina. 

La memantina es un medicamento que protege al cerebro de los niveles excesivos de una sustancia química llamada glutamato. A veces se utiliza en combinación con inhibidores de la acetilcolinesterasa.  

Explore otros recursos

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Tools to Tackle Thinking and Memory Changes in PD

Women sitting on couch in pain

As we age, our thinking abilities change. Cognitive changes can also occur in Parkinson's disease (PD), including slower thinking, forgetfulness, lack of focus and sometimes, memory loss. In this article, learn practical strategies to lower the risk of thinking changes, improve cognitive health and discover available therapies for cognitive disorders. 

The following article is based on a Parkinson’s Foundation Expert Briefing about thinking and memory changes in Parkinson’s, hosted by Dr. Gregory Pontone, MD, MHS, University of Florida Center for Movement Disorders and Neurorestoration, a Parkinson’s Foundation Center of Excellence. 

Aging and Cognition

Some thinking processes are well-preserved as we age, including:  

  • vocabulary and general knowledge. 

  • language skills. 

  • remembering how to do things, like ride a bike or cook pasta (procedural memory), the name of the president or your neighbor (semantic memory). 

  • the ability to grasp what we see.  

Changes in any of these abilities prior to age 70 could be related to Parkinson’s or another aging-associated disease. As someone moves into and beyond their 70s, age and/or Parkinson’s might impact: 

  • the ability to hold onto information short-term while focusing on another task (working memory). 

  • planning, organizing and accomplishing tasks (executive function). 

  • focused and divided attention. 

  • how fast the brain understands and responds to information. 

Recognizing Cognitive Change in PD

Some degree of thinking changes can affect many people with Parkinson’s. These changes tend to progress gradually alongside movement symptoms. People with young-onset Parkinson’s disease — those who develop symptoms before age 50 — often experience milder, slower cognitive change related to PD.  

Mild cognitive impairment (MCI) describes memory or thinking changes that do not impact daily life.  

In some people with Parkinson’s, progressive cognitive change can lead to PD dementia (PDD), a more severe decline in thinking. Sometimes a person has insight that their memory is failing, but other times, it is the people closest to them who recognize the signs. Cognitive impairment in PD can affect:  

  • Task performance, such as organizing medications or using a remote control.   

  • Word-finding and language abilities, impacting the ability to follow directions or participate in conversations. 

  • Memory, causing a person to repeat questions, forget important information or have trouble learning new information. 

  • Judgement, leading someone to ignore risks or to make bad decisions. 

  • Orientation with time and place; a person with impaired thinking may get lost, especially in familiar places. 

Memory Difficulty in PD vs. Alzheimer’s Disease

Doctors use the Montreal Cognitive Assessment (MoCA) as a screening tool for thinking changes. It can distinguish between types of memory dysfunction. 

Memory impairment related to Parkinson's differs from Alzheimer's disease. A good portion of recognition memory — the skill of recalling things you have come across before — remains largely intact for most people with Parkinson's. Someone with Parkinson’s may have a little difficulty searching for and retrieving a memory but, with a hint or enough time, can remember. A person with Alzheimer's is generally unable to make or retrieve new memories.  

Parkinson’s, PD dementia, dementia with Lewy bodies and Alzheimer's disease are associated with abnormally folded proteins that form sticky clumps which damage brain health. Lewy bodies are toxic clusters of alpha-synuclein protein that build up in the brain.  

Memory failing early in the course of PD or failing in a way similar to Alzheimer's could indicate a person with Parkinson's might also have Alzheimer's.  

Potential Breakthroughs 

Gaining a deeper understanding of the complex workings behind PD can improve treatment and care. Researchers are now able to visualize the toxic clumps associated with memory issues through imaging techniques. Scientists are hopeful meaningful advances in technology will soon allow closer examination of misfolded alpha-synuclein protein.  

Antibody infusion therapy can remove amyloid from the brain of people with early Alzheimer's disease. The hope is that infusions will slow down disease progression. Future Parkinson’s therapies could inhibit the misfolding of alpha-synuclein proteins to minimize Lewy body formation or possibly even remove abnormal alpha synuclein.  

Tools to Improve Cognition Today

As you navigate Parkinson’s stages and symptoms, the pursuit of wellness can have a profound impact.  

1. Get moving

The benefits of aerobic exercise in Parkinson’s are powerful. Whether swimming, walking or doing another moderate intensity workout, exercising 150 minutes each week can enhance stability and balance, decrease the risk of falls, reduce depression and directly benefit cognition in PD, improving: 

  • attention 

  • processing speed 

  • reaction time 

  • executive function 

  • language 

Resistance training — using bodyweight, weights or bands — can also benefit cognition, balance, gait and bone density, while reducing the risk of fractures in PD. Resistance training also improves executive function and attention.  

2. Practice mindfulness

A 2004 study looked at how 20 people with mild to moderate Parkinson's and 10 people who didn't have PD performed a task as layers of complexity were added. 

Researchers discovered that while increasing demands on attention contributed to performance and gait disturbances across all participants, the people who had Parkinson's slowed down even more. Practicing mindfulness, focusing on one thing at a time and blocking out distractions, can help you function optimally with Parkinson’s. 

3. Eat a nourishing diet

The MIND diet (Mediterranean-DASH Intervention for Neurodegenerative Delay), a combination of the Mediterranean diet and DASH (Dietary Approaches to Stop Hypertension), is an evidence-based diet for neurological health. Recommendations include eating: 

  • at least 3 portions of whole grains daily. 

  • a minimum daily serving of one dark, leafy green salad and one serving of vegetables. 

  • at least 30 grams of nuts daily. 

  • beans or legumes at least every other day. 

  • berries at least twice a week. 

  • poultry at least twice a week. 

  • fish at least once a week. 

And limiting:   

  • butter or margarine to no more than a tablespoon a day (use olive oil instead). 

  • cheese, fried or fast food to no more than once a week. 

  • pastries or sweets to less than five times a week. 

4. Get good sleep

Quality sleep plays a role in making and recalling memories and may also remove some of the abnormal proteins associated with memory loss. It also helps the body realize the gains of exercise.  

Parkinson’s-related brain changes and symptoms can disrupt slumber. Practicing behaviors that get you in the optimal state to relax can help you fall asleep and stay asleep. A healthy sleep routine includes: 

  • a regular sleep-wake schedule (try to set aside at least 8 hours). 

  • a quiet, dim bedroom. 

  • minimal screen time. 

Talk to your doctor about sleep issues or concerns. You can work together to find the best tools to address your symptoms. 

5. Stay socially connected

Finding and building healthy social relationships benefits the brain and body. Look to community resources for a starting point, including local exercise classes, art activities, support groups or volunteer opportunities. In-home visits, phone calls or online programs can benefit those who have difficulty getting out. 

Social isolation and loneliness can be dangerous.  

  • Social isolation is associated with a 50% increased risk of dementia, and significantly increases the risk of premature death, rivaling the risks of smoking, obesity and physical inactivity.  

  • Research shows isolation increases the risk of heart disease and stroke by about 30%. 

Loneliness can increase anxiety, depression, confusion, delusions, memory and communication problems and can impact problem-solving skills. Isolation also increases care partner strain, which can lead to burnout.  

6. Explore treatment

Your doctor may recommend you work with a specially trained neuropsychologist or speech-language pathologist who can offer ways to compensate for memory or thinking problems. 

Some prescription medications can also improve symptoms of PD dementia. Acetylcholinesterase inhibitors boost acetylcholine (a chemical important for memory and more) in the brain. These include rivastigmine (the only FDA-approved PDD medication), donepezil and galantamine. 

Memantine is a medication that protects the brain from excess levels of a chemical called glutamate. It is sometimes used in combination with acetylcholinesterase inhibitors.  

Explore More Resources

My PD Story

Rich Bond headshot
People with PD

Rich Bond

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.

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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:

My PD Story

Marge Fleming Smith and husband, Bill.
Family Members

Marge Fleming Smith

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:

My PD Story

Vivek Puri headshot
People with PD

Vivek Puri

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.

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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. 

Learn more about deep brain stimulation and other Parkinson’s treatment options. 

Watch our webinar A Deep Dive into Deep Brain Stimulation, sponsored by Abbott:

Fact Sheets

El habla y la deglución (tragar) en el Parkinson

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.
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