100 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

    • Health & Fitness
    • 4.2 • 105 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.

    How to Cope with Blood Pressure Fluctuations

    How to Cope with Blood Pressure Fluctuations

    Parkinson’s disease (PD) affects several automatically regulated bodily functions, such as digestion, bowel activity, sweating, and blood pressure control, together known as autonomic functions. Low blood pressure, or hypotension, is common in PD, and high blood pressure (hypertension) can also occur. They may be a result of the disease itself or be caused by some of the medications to treat it. Hypotension, in particular, can be dangerous, leading to dizziness, fainting, falls, and fractures.
     
    Up to 60% of people with PD may experience orthostatic hypotension at some point, which is a drop in blood pressure within three minutes of changing to a more upright position, that is, from sitting to standing or from a lying position to sitting or standing.
     
    In this episode, Jeni Bednarek, RN, BSN, ACRP-CP, nurse team coordinator and associate director of education of the Parkinson Center of Oregon in the Parkinson’s Center and Movement Disorders Program of the Oregon Health and Science University in Portland, a Parkinson’s Foundation Center of Excellence, discusses several ways for individuals with PD to cope with blood pressure problems, including pharmacologic and non-pharmacologic methods, as well as working with their health care providers to reach a good blood pressure balance.

    • 14 min
    Meet the Researcher: How Pesticides Impact Parkinson’s

    Meet the Researcher: How Pesticides Impact Parkinson’s

    Researchers are accumulating evidence about how the environment affects our health and our diseases – both our internal and external environments. A significant part of our internal environment is the gut microbiome, that is, the bacteria, fungi, and viruses that naturally inhabit our intestinal tracts. The external environment is everything around us that we eat, inhale, or come into contact with, including industrial chemicals and pesticides.
     
    Studies have shown that people with Parkinson’s disease (PD) harbor distinct gut microbiomes. Environmental exposures and genetic factors can affect the composition of the microbiome. Exposure to pesticides is a leading environmental risk for many neurological diseases, including PD. Tim Sampson, PhD, a cell biologist at Emory University in Atlanta, Georgia, a Parkinson’s Foundation Center of Excellence, received one of the Foundation’s Stanley Fahn Junior Faculty Awards to study how genetics and Parkinson’s-linked pesticides affect the gut microbiome. The aim is to see how these interactions may trigger Parkinson’s symptoms within the gut as well as those originating in the brain, with a goal of gaining insight at the earliest stages of the disease to better prevent PD and develop new therapeutic targets.

    • 23 min
    Being There for Your Parent with Parkinson’s

    Being There for Your Parent with Parkinson’s

    Adult children of a parent with Parkinson’s disease (PD) often want to help their parent but do not know how to begin. If they get involved early, they can detect changes that need to be addressed later on. A good first step is learning about the disease, its symptoms, treatment, and course. From there, they may want to become an active part of the support team that each person with PD should have from the time of diagnosis. Adult children can help schedule doctor’s appointments; attend them with their parent, navigate insurance and other financial concerns, and keep their parent moving and socially involved by engaging in sports and activities with them. This all depends on the parent’s willingness to have their children help out with some aspects of their lives.
     
    In this episode, Social Worker Kelly Arney, MSSW, outreach coordinator for the Parkinson’s Foundation Center of Excellence at Vanderbilt University Medical Center in Nashville, has several good pieces of advice for different situations, including communicating with the parent about how much help they will accept without giving up their autonomy.

    • 18 min
    How Social Workers Can Help Ease Anxiety about the Unknown

    How Social Workers Can Help Ease Anxiety about the Unknown

    The news of a Parkinson’s diagnosis can be overwhelming. So many questions arise, including how it will change the person’s life, what lies ahead, and what to do first. Social workers can be a vital resource in helping a newly diagnosed person, care partner, and family navigate the road ahead, as well as provide ongoing support through the course of the disease. They are the health professionals who know and can coordinate many of the most helpful resources. Or as social worker Lance Wilson, LSW, C-SWHC, ASW-G, the education outreach coordinator for the Jefferson Health Comprehensive Parkinson’s Disease and Movement Disorder Center in Philadelphia, a Parkinson’s Foundation Center of Excellence, puts it, social workers are the Yellow Pages for health care, tying people into the resources they need. He says social workers can help put people’s minds at ease by assessing their needs and lining up professionals who can provide medical, mental health, spiritual services, and more.

    • 21 min
    What to Do When the Next Medical Appointment is Months Away

    What to Do When the Next Medical Appointment is Months Away

    Medical problems often do not follow a schedule, and it can be frustrating to get them addressed when the next doctor appointment is weeks or months away. It’s important to have a plan about what to do for support between clinic appointments. A good first step is to discuss the issue with your health care team and to arrange to have a designated person or point of contact should such a situation arise. Heather Russell, RN, Coordinator of the Parkinson’s Foundation Center of Excellence at the London Health Sciences Centre in London, Ontario, Canada, is that person for her clinic. In this episode, she describes how she helps her patients when they have a medical problem related to their Parkinson’s disease and their next scheduled clinic visit is some time away.

    • 14 min
    ¡EN ESPAÑOL! Crear un plan de autocuidado y por qué es importante para los cuidadores

    ¡EN ESPAÑOL! Crear un plan de autocuidado y por qué es importante para los cuidadores

    Ser trabajadora social en una clínica significa ser parte del equipo médico y brindar atención a las personas que viven con Parkinson y a sus familias.
     
    En este episodio, hablamos con Adriana González, trabajadora social en el Centro para el Parkinson y Otros Trastornos del Movimiento de la University of California, San Diego. Como trabajadora social, Adriana ayuda a las familias y a los cuidadores a identificar recursos comunitarios y los apoya cuando enfrentan situaciones difíciles.
     
    La meta de Adriana es conocer a las familias desde el inicio de la enfermedad para hablar acerca de los diferentes periodos y crear un plan antes de llegar a un momento de crisis.
     
    Para Adriana, lo más importante es concientizar a la comunidad de habla hispana acerca de la enfermedad de Parkinson para mejorar el manejo médico de esta enfermedad y apoyar a más familias y cuidadores que están tratando de ayudar a su ser querido con Parkinson.
     
    Como noviembre es el Mes Nacional de Cuidadores Familiares, hablamos con Adriana acerca de la importancia del autocuidado: un plan que garantiza que los cuidadores o aliados de cuidado estén atentos a su propio bienestar.

    • 22 min

Customer Reviews

4.2 out of 5
105 Ratings

105 Ratings

Caring Faye ,

Getting away from Parkinson’s

I enjoyed the positivity that the panelists exuded in their recollection of daily life with PD without feeling its burden ! As a happy Mom of 2 loving adult children, wife, researcher, nutritionist, avid tennis player, my life was interrupted by YOPD 12 years ago but instead of wallowing in my sorrow, I chose to accept the affliction as I would accept letting an annoying neighbor live with me for the rest of my life! I rather adjust to my new condition than fight it as one of your panelists alluded to! No one including the physically

Becky from Plano ,

Grouchy PD husband

Thank you for your very informative podcast. My husband was diagnosed 5 years ago. His mother also had Parkinsons but it was a very mild case. My question is this: Are mood changes common with this disease? My sweet, loving husband has turned into a grouchy complainer. I can’t seem to do anything right in his opinion. I look forward to your answer.

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.

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