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Artwork for Substantial Matters: Life & Science of Parkinson's

Substantial Matters: Life & Science of Parkinson's

Parkinson's Foundation
Parkinson's Disease
Caregiving
Clinical Trials
Movement Disorders
Gene Therapy
Enfermedad De Parkinson
Support Groups
Parkinson's Foundation
Diagnosis
Alpha-Synuclein
Dopamine
Independence
Carbidopa-Levodopa
Parkinson's
Black Community
Health Disparities
Genetic Testing
Living Alone
Communication
Daily Routine Adjustments

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. View more information on our episodes by visiting parkinson.org/Podcast. Share your comments and thoughts at parkinson.org/Feedback... more

PublishesTwice monthlyEpisodes100Founded9 years ago
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Health & FitnessEducation

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Artwork for Substantial Matters: Life & Science of Parkinson's

Latest Episodes

Sleep problems affect more than 75% people with Parkinson's disease (PD) and can have a significant impact on day to day life. Common challenges include difficulty falling or staying asleep, excessive sleepiness during the day, and acting out dreams ... more

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¡Siga y califíquenos en su plataforma favorita de podcasts para recibir notificaciones cuando salga un nuevo episodio! Cuéntenos que otros temas le gustaría que cubriéramos visitando parkinson.org/podcastencuesta.

Muchas personas asumen que los pr... more

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Interest in the gut microbiome and its potential role in Parkinson's disease (PD) continues to grow. Before exploring the latest research, it's helpful to understand what the microbiome is, the role it plays in overall health, and why researchers are... more

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Changes in speech and swallowing are common in Parkinson's disease (PD), but they can be difficult to recognize without understanding how they may present. These changes often happen because of lower dopamine levels in people with PD, which can make ... more

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Recent Guests

Caron Gan
Patient Engagement Board member, NAPS Consortium
NAPS Consortium
Episode: Understanding REM Sleep Disorder in Parkinson's
John Poma
Patient Engagement Board member, NAPS Consortium
NAPS Consortium
Episode: Understanding REM Sleep Disorder in Parkinson's
Martha Suárez Torres
Speech-language pathologist allied with Parkinson's caregiving
Therapist de habla y lenguaje, aliada en el cuidado de su esposo con Parkinson
Episode: ¡EN ESPAÑOL! Cómo identificar las señales: Problemas de deglución en el Parkinson
Lisa Deuel
Movement disorders neurologist
University of Vermont Medical Center
Episode: What Your Gut Has to Do with Parkinson's
Samantha Elandary
Speech-language pathologist, founder and CEO of the Parkinson Voice Project
Parkinson Voice Project
Episode: Speaking with Intention
Andi Lipstein Fristedt
Executive Vice President and Chief Strategy and Policy Officer at the Parkinson's Foundation
Parkinson's Foundation
Episode: Raising Awareness About Parkinson's Through Advocacy
Ken Chason
Parkinson's Foundation Ambassador, US Army veteran, and a person living with Parkinson's
Parkinson's Foundation
Episode: Raising Awareness About Parkinson's Through Advocacy
Samantha Helton
Patient with young onset Parkinson's who underwent DBS
Patient of Dr. Tarakad
Episode: Questions to Ask When Considering Deep Brain Stimulation
Leslie Pelton
Senior Program Officer at the John A. Hartford Foundation
John A. Hartford Foundation
Episode: Improving Safety and Parkinson's Care in the Hospital

Hosts

René Sánchez-Mezas
Host of Spanish-language episodes, Parkinson's Foundation
Dan Keller
Host of Substantial Matters: Life & Science of Parkinson's, Parkinson's Foundation

Reviews

4.2 out of 5 stars from 185 ratings
  • 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.

    Apple Podcasts
    5
    Jack the cleaner
    United States2 years ago
  • 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 all... more

    Apple Podcasts
    5
    Caring Faye
    United States4 years ago
  • 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.

    Apple Podcasts
    5
    Becky from Plano
    United States6 years ago
  • 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.

    Apple Podcasts
    5
    Aspiehler
    United States7 years ago
  • Helpful!

    Great job keeping us informed!

    Apple Podcasts
    5
    BambiLashae
    United States7 years ago

Listeners Say

Key themes from listener reviews, highlighting what works and what could be improved about the show.

Panel discussions feel hopeful and practical for daily PD management.
The show provides well-researched, accessible info for families and patients.
Guests offer compassionate, real-world perspectives that help families cope.

Chart Rankings

How this podcast ranks in the Apple Podcasts, Spotify and YouTube charts.

Apple Podcasts
#237
Singapore/Health & Fitness

Talking Points

Recent interactions between the hosts and their guests.

Understanding REM Sleep Disorder in Parkinson's
Q: What is REM Sleep Behavior Disorder and what causes it?
RBD is a parasomnia where muscle paralysis during REM sleep is lost, allowing people to act out dreams, sometimes violently; it can be linked to neurodegenerative processes and, in many cases, may precede Parkinson's disease or other synucleinopathies.
Improving Safety and Parkinson's Care in the Hospital
Q: Dr. Rebecca Miller, how might your hospital stay have been different if the four M's were applied to your care?
The four M's would have ensured medications were aligned with what matters to me, prevented delirium, supported mobility, and maintained a focus on my individual needs, potentially reducing harm and shortening the hospital experience.
Questions to Ask When Considering Deep Brain Stimulation
Q: What are the general recovery timelines after DBS surgery?
The approach is often staged, with a brain surgery followed by implantation a couple of weeks later; most patients take about a week off work initially, and full stabilization of stimulation settings typically occurs over four to six months.
Questions to Ask When Considering Deep Brain Stimulation
Q: What expectations do you most often need to clarify when talking to a patient about DBS?
DBS can improve motor symptoms and tremor most reliably, but it doesn't halt disease progression or reliably fix non-motor issues like mood or cognition; expectations should be grounded in what is realistically achievable.
Breakthroughs Take Time: Looking at the Future of Parkinson's Research
Q: What are some of the goals of the PD Generation study, particularly around enrollment and expanding diversity?
PD Generation aims to have a diverse cohort and large participant enrollment, with a focus on expanding globally and including underrepresented groups.

Audience Metrics

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Frequently Asked Questions About This Podcast

What is This Podcast about and what kind of topics does it cover?

This show centers on practical, person-facing aspects of living with Parkinson's, with episodes that explore swallowing and speech therapy, gut-brain connections, hospital care, and non-pharmacological strategies, alongside policy advocacy and family caregiving. Guests range from clinicians and researchers to patient advocates and care partners, offering both clinical insights and real-world perspectives for patients, families, and healthcare professionals alike. A notable strength is its emphasis on actionable guidance, home-based practices, and systemic improvements in care delivery, often paired with policy context and caregiver resources that help listeners navigate daily life and care decisions.

Overall, the program is valuable for th... more

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this podcast launched 9 years ago and published 100 episodes to date. You can find more information about this podcast including rankings, audience demographics and engagement in our podcast database.

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What guests have appeared on this podcast?

Recent guests on this podcast include:

1. Caron Gan
2. John Poma
3. Martha Suárez Torres
4. Lisa Deuel
5. Samantha Elandary
6. Andi Lipstein Fristedt
7. Ken Chason
8. Samantha Helton

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