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 • 121 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.

    Introducing Our Hospital Safety Guide

    Introducing Our Hospital Safety Guide

    A hospital stay can be a stressful situation for everyone, whether you are the person receiving care or the support person providing comfort.  People with Parkinson’s (PD) are at a higher risk of hospitalizations, so it is crucial to be prepared ahead of time for when the situation arises. The Parkinson’s Foundation recently created the Hospital Safety Guide, which is the updated and improved version of the former Aware in Care kit. The Guide incorporates information from the kit, but now highlights the “Five Parkinson’s Care Needs”, which is a tool for communicating your needs and priorities with hospital staff. It also includes a Hospital Planner checklist with step-by-step instructions on how to create a hospital “go bag” for emergencies. The Guide provides infographics and real-life examples from people with Parkinson’s and loved ones who have solved common problems relating to their PD when in the hospital. 
    In this episode, Annie Brooks, Director of Strategic Initiatives at the Parkinson’s Foundation, discusses features of the new Hospital Safety Guide and how best to use it.

    • 21 min
    ¡EN ESPAÑOL! Colaborando con los trabajadores de salud comunitaria

    ¡EN ESPAÑOL! Colaborando con los trabajadores de salud comunitaria

    Los trabajadores de salud comunitaria (TSC o CHW, por sus siglas en inglés) o promotores ayudan a cerrar la brecha entre los profesionales de la salud y los miembros de la comunidad proporcionando educación y recursos culturalmente competentes y relevantes a la comunidad local. Desempeñan un papel vital en la interacción con la comunidad para identificar necesidades, proporcionar educación sanitaria y servir como recurso. Generan confianza y un sentimiento de conexión con los miembros de la comunidad, con el objetivo de empoderarlos para tomar decisiones informadas acerca de su salud y bienestar en general.  
    La Parkinson’s Foundation puso en marcha un programa de formación para promotores para brindarles educación acerca de la enfermedad de Parkinson, con la esperanza de que esto los lleve a compartir y generar conciencia acerca de la enfermedad en sus comunidades. En este episodio, invitamos a Ilda Hernandez, una promotora que trabaja con Enlace en la zona de Chicago y que recientemente completó la formación. Habla de la importancia de trabajar en colaboración con las organizaciones locales y los sistemas de salud y destaca algunos desafíos que ha enfrentado durante sus esfuerzos de vinculación en su comunidad.

    • 24 min
    Implications of Gene-Based Therapies for Parkinson’s Disease

    Implications of Gene-Based Therapies for Parkinson’s Disease

    Gene-based therapy for Parkinson’s disease is an area of research that is currently being developed. It works by introducing genetic material into the brain, which can then “instruct” cells to produce compounds that can potentially alleviate symptoms of Parkinson’s. Although years have gone by since the first gene-based clinical trial, there is still much to learn before fully realizing its potential impact to treat Parkinson’s disease.
    In this episode, Movement Disorders Neurologist, Andrew Feigin, MD of New York University Langone Health discusses what gene-based therapy is, how it differs from cell-based therapy, different trials currently in progress, and considerations for future research.

    • 23 min
    Celebrating Our Parkinson’s Foundation Volunteers

    Celebrating Our Parkinson’s Foundation Volunteers

    This month, we are honoring and celebrating our Parkinson’s Foundation volunteers. Every volunteer helps make a difference in the everyday lives of people living with Parkinson’s disease, whether it’s by helping organize a local community walk, serving as a research advocate providing feedback and collaborating with scientists on research studies, or speaking at a panel for a community education program. There are many opportunities to get involved with the Foundation.
    In this episode, we highlight two volunteers who share their stories about how they became involved with the Parkinson’s Foundation.

    • 22 min
    Exploring Carbidopa-Levodopa for Treating Parkinson’s Symptoms

    Exploring Carbidopa-Levodopa for Treating Parkinson’s Symptoms

    Carbidopa-levodopa is considered the “gold standard treatment” for Parkinson’s disease. Levodopa works to replace levels of dopamine in the brain, thereby alleviating PD symptoms, while Carbidopa works to reduce adverse effects in the rest of the body. Although years have passed since the creation of this treatment, it is still commonly known to be an effective drug for reducing PD symptoms in a majority of people living with Parkinson’s.
    In this episode, we hear from Dr. Emily Peron, PharmD and Dr. Leslie Cloud, MD from Virginia Commonwealth University*. They discuss how and why carbidopa-levodopa continues to be a standard treatment for PD, long-term use considerations, its different forms, and when to recognize the need for potential medication adjustments.
    *Denotes a Parkinson's Foundation Center of Excellence

    • 31 min
    Navigating Disparities, Ethics, and Stigma in the Black Parkinson’s Community

    Navigating Disparities, Ethics, and Stigma in the Black Parkinson’s Community

    Black and African American people diagnosed with Parkinson’s disease (PD) face disparities in healthcare access and outcomes, potentially leading to decreased access to care, resources, and research opportunities. It is crucial to recognize their unique needs and experiences so that scientists can better understand how PD impacts diverse communities. The Parkinson’s Foundation aims to identify these healthcare disparities to better serve and support the community.
    In this second episode of our Black History Month special, Dr. Reversa Joseph, Neurologist, MDS at the Columbus Ohio VA, and Dr. Hiral G. Shah, Neurologist, MDS at Columbia University Medical Center, discuss current and historical disparities in research and treatment among the Black and African American PD community. They emphasize the importance of raising awareness about PD in this community, as well as in the medical space, to better understand the diverse lived experiences of the Black PD community. They also address the need to create more PD resources that reflect the voices of the community at hand.

    • 30 min

Customer Reviews

4.2 out of 5
121 Ratings

121 Ratings

Jack the cleaner ,

85 year old mother with PD

I really appreciate the content here, it’s well presented and seems well researched, yet not lobbied.

My 85 year old mother has been living with the diagnosis for nearly 12 years now, and I love the fact that I can not only understand in part it’s progression but it’s treatment as well, in no small part due to this podcast.

It has also helped me communicate better with my siblings what is/is not happening with her symptoms and ensuing anxieties.

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.

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