95 episodes

How can people with Parkinson's live a better life today? Join the Parkinson's Foundation as we highlight the treatments and techniques that can help all people affected by Parkinson’s live a better life today, as well as the research that can bring a better tomorrow.

Substantial Matters: Life & Science of Parkinson’s Parkinson’s Foundation

    • Medicine
    • 4.3, 63 Ratings

How can people with Parkinson's live a better life today? Join the Parkinson's Foundation as we highlight the treatments and techniques that can help all people affected by Parkinson’s live a better life today, as well as the research that can bring a better tomorrow.

    What is Lewy Body Dementia and How Does it Relate to Parkinson’s?

    What is Lewy Body Dementia and How Does it Relate to Parkinson’s?

    Parkinson’s disease (PD) is a multi-factorial condition, with the potential to affect all aspects of people’s lives. Besides the well-known motor and non-motor symptoms, it also can lead to dementia, characterized by impairment of such mental functions as cognition, memory, and judgment, leading to forgetfulness, limited social skills, and difficulties in daily functioning. The decline in mental abilities can range from mild cognitive impairment that does not affect work or daily functioning to dementia, with much in-between the two. Dementia in PD mainly affects a person’s ability to pay attention or concentrate, to multitask and solve problems (executive function), and their visuospatial skills, meaning their ability to see information in three dimensions. It may have less effect on memory than some other forms of dementia.
     
    Parkinson’s disease dementia (PDD) falls under the umbrella term of Lewy body dementia, along with another condition being dementia with Lewy bodies (DLB). In both diseases, Lewy bodies, clumps of alpha-synuclein and other proteins, accumulate in nerve cells in the brain, causing them to lose function.
     
    Because of their similarities, PDD and DLB are distinguished mainly based on when movement symptoms and dementia arise. People with PD early on experience movement symptoms, and years to decades later may develop PDD. With DLB, movement symptoms and dementia start together or within a year of each other. Dr. Jennifer Goldman is the section chief of Parkinson’s Disease and Movement Disorders at the Shirley Ryan Abilitylab and professor of physical medicine, rehabilitation, and neurology at Northwestern University Feinberg School of Medicine in Chicago, a Parkinson’s Foundation Center of Excellence. In this podcast, she describes the similarities and differences between PDD and DLB, talks about medications and cautions, and offers people with PD important suggestions for coordinating medical care and when accessing care.

    • 21 min
    ¡EN ESPAÑOL! El gran impacto de los líderes de la salud en la comunidad del Parkinson

    ¡EN ESPAÑOL! El gran impacto de los líderes de la salud en la comunidad del Parkinson

    A través del alcance comunitario para la comunidad del Parkinson de habla hispana, vemos que hay una gran necesidad de servicios no solo en español, sino que respondan a la cultura. También existe un gran interés en desarrollar servicios para la población con acceso limitado a estos recursos. Por esta razón, Claudia Martinez, coordinadora de alcance hispano del Muhammad Ali Parkinson Center, parte del grupo de Centros de Excelencia de la Parkinson’s Foundation, realizó un entrenamiento para los líderes de la salud para ayudar a que otros líderes puedan aplicar las técnicas aprendidas en sus propias ciudades para apoyar la comunidad de habla hispana.
     
    Gracias a una beca comunitaria de la Parkinson’s Foundation, Claudia pudo obtener los fondos para desarrollar este proyecto, creando una red de líderes de la salud interesados en desarrollar programas para la comunidad hispana del Parkinson con un enfoque cultural adecuado.
     
    En este episodio, Claudia nos explica como desarrolló este programa, cubriendo temas importantes como el respeto cultural, la diversidad cultural enfocada en nuestra comunidad hispana, y el alcance comunitario, estableciendo redes comunitarias de apoyo y enfocando estos conceptos en un programa práctico que cada líder pueda desarrollar.

    • 14 min
    Personalized Medicine: The Voice of the Patient

    Personalized Medicine: The Voice of the Patient

    Personalized medicine has garnered a lot of attention over the past decade. Usually it means determining the factors for each person that affect their health, their diseases, and potentially their treatments. Some examples are biomarkers that are found in their blood, their genetic make-up, diet and nutrition, behaviors, and environment. One example is the Parkinson’s Foundation’s PD GENEration initiative that offers free genetic testing and counseling for people with Parkinson’s disease (PD) to determine what genes and gene variants affect the course of their disease and response to treatments.
     
    But despite all the scientific advances that allow these forms of personalized medicine, one crucial aspect of personalized medicine is the voice of the patient, both in each person’s encounters with the medical system and treatment team, as well as to inform the kinds of research that should be done and how to design and perform them. Dr. Bas Bloem, a professor of movement disorder neurology at Radboud University Medical Center in Nijmegen, the Netherlands, a Parkinson’s Foundation Center of Excellence, discusses how people with PD want to be heard and how a new definition of health may best put people’s disease into the overall context of their lives.

    • 15 min
    Importance of Early Detection of Swallowing Disturbances

    Importance of Early Detection of Swallowing Disturbances

    Since swallowing involves a complex and coordinated sequence of muscular movements, it is not surprising that difficulties swallowing food or liquids are common in a movement disorder such as Parkinson’s disease (PD). They can cause problems from the inconvenient to troubling, dangerous, or life threatening. Drooling is uncomfortable and can result in social isolation. Not taking in enough food to get adequate calories and nutrients may cause hunger, malnutrition, weight loss, and frailty. Obstruction of the trachea (windpipe) or having food or liquid reach the lungs can be life threatening.
     
    The medical term for impaired swallowing is dysphagia. Fortunately, much can be done to help people with dysphagia, starting with an evaluation by a speech-language pathologist (SLP). This medical professional will take a history, asking about the problem, when it occurs, and how severe it is. The SLP will do a physical examination related to swallowing and a video x-ray or will use an endoscopic camera to visualize the swallowing process while the person with PD consumes foods or liquids with different consistencies, following them from the mouth to the stomach.
     
    Once the form and extent of the problem is determined, the SLP can recommend various techniques for the person to do, as well as recommend ways of preparing foods and liquids that may help alleviate problems. SLP Yael Manor, PhD of the Tel Aviv Medical Center in Israel, a Parkinson’s Foundation Center of Excellence, describes the extent of the problem of dysphagia among people with PD, how she evaluates problems, and ways to alleviate them.

    • 12 min
    ¿Cuál es el siguiente paso? Cómo participar en las pruebas genéticas

    ¿Cuál es el siguiente paso? Cómo participar en las pruebas genéticas

    La participación de hispanos en estudios genéticos es necesaria para mejorar el entendimiento de la enfermedad del Parkinson. También aseguraría que los datos de los hispanos estén representados y que esos resultados se tomen en cuenta para iniciativas de salud en caso exista diferencia entre poblaciones. Sin embargo, vemos un porcentaje muy bajo de representación de esta comunidad, debido a varias razones como la falta de información sobre cómo funcionan los estudios y acceso a los hospitales por falta de seguro médico, por ejemplo.
     
    En este episodio, hablamos con el doctor Ignacio Mata, doctor en neurogenética e investigador principal en el departamento de genómica medica en la Cleveland Clinic sobre el siguiente paso en la representación de hispanos en las pruebas genéticas: cómo participar.  
     
    Este episodio es el cuarto y final de nuestra serie con el doctor Mata, en la que cubrimos los temas de la genética, la importancia de las pruebas genéticas y la representación hispana en la comunidad de Parkinson.

    • 14 min
    Managing Anxiety with PD

    Managing Anxiety with PD

    The Parkinson’s Outcomes Project (POP) is the largest-ever clinical study of people with Parkinson’s disease (PD). Since the beginning of this groundbreaking initiative in 2009, Parkinson’s Foundation Centers of Excellence have been tracking and monitoring the care of more than 13,000 people in five countries with all stages of PD. The goal is to find the most effective therapies, study their benefits, and determine the best candidates for each treatment.
     
    One of the findings of POP is that anxiety is a major factor affecting the overall health of people with PD. Worry about a health condition is normal, but when it becomes constant feelings of worry or nervousness beyond what is understandable, it may be anxiety, a mental health condition. Anxiety is not just a reaction to a diagnosis of PD or the daily stresses that accompany it but is also an integral part of the disease caused by changes in brain chemistry. It may even predate the diagnosis.
     
    As many as 40 percent of people with PD will experience some form of anxiety, such as generalized anxiety disorder, anxiety attacks, social avoidance, or obsessive-compulsive disorder. Fortunately, mental health professionals can help by providing effective talk and, when appropriate, drug therapies. In this episode, clinical psychologist Roseanne Dobkin, PhD, Professor of Psychiatry at Rutgers University in New Jersey, discusses the difference between reasonable worry and problematic anxiety and elucidates some of the ways mental health professionals can help when feelings become distressing or all consuming, interfering with day to day life and activities.

    • 14 min

Customer Reviews

4.3 out of 5
63 Ratings

63 Ratings

Aspiehler ,

Perspective

A wonderful way to get a diverse perspective and info on the many different facets of living with PD. or loving someone with PD.

BambiLashae ,

Helpful!

Great job keeping us informed!

Annie from Cbus ,

Love the podcast!

This is a great way to spend a short amount of time and get a lot of good information! I listen when I drive to and from meetings during the week.

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