Parkinson's Disease Story Exchange

The PD Story Exchange Team
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The Parkinson's Disease Story Exchange uplifts unheard voices in and outside of the Parkinson's community. Listen to real conversations where filters are thrown out the door. All so that you can know the nitty, gritty, and the in-between about this disease.

Episodes

  1. What to Know | with Dr. Paulina Gonzalez-Latapi, Dr. Daniel G. Di Luca, Dr. Ece Bayram, and Dr. Johanna O'Day

    02/17/2025

    What to Know | with Dr. Paulina Gonzalez-Latapi, Dr. Daniel G. Di Luca, Dr. Ece Bayram, and Dr. Johanna O'Day

    There's several other hundred blogs, videos, and podcasts that hosts researchers and doctors for their own significant panel discussions. Still, there lacks a diversity in voices, experiences, and backgrounds within these panels. I wanted to challenge that. A few years back, I met with world-renowned clinicians across North America and asked them: What should patients know about most? From their diverse backgrounds, international experiences, and distinctive voices, viewers and listeners can finally feel seen and hear from physicians/researchers that better reflect them. _____________________ Tune in to learn more about what you need to know about your Parkinson's journey. Read more for information about the our panelists below! _____________________ Dr. Paulina Gonzalez-Latapi, MD A leading advocate for the Latino community, Dr. Gonzalez-Latapi from the Parkinson’s Disease and Movement Disorders Center at Northwestern Memorial Hospital reminds viewers how they can stay connected to and take charge of their medical care. https://www.feinberg.northwestern.edu/faculty-profiles/az/profile.html?xid=50712 _____________________ Dr. Daniel G. Di Luca , MD, MSc Heavily engrossed in Parkinson's research, Dr. Di Luca is now an Assistant Professor of Neurology and Movement Disorders at Washington University in St. Louis. He leads the conversation on what he recalls as patients remembering "the first person to tell them about their PD diagnosis" and sympathizes with their plight. https://physicians.wustl.edu/people/daniel-g-di-luca-md-msc/ ________________ Dr. Ece Bayram, MD, PhD Candid and conversational, Dr. Bayram, originally born and raised in Turkey, speaks on her time conducting clinical research trials with PD patients and what she's learned from respecting patient's own comfort zones along the way. Now a Assistant Professor of Neurology at University of Colorado's Alzheimer's and Cognition Center, Dr. Bayram remains hopeful that viewers will takeaway the clinician's perspective from this panel. https://medschool.cuanschutz.edu/alzheimer/about/directory/faculty/ece-bayram __________________ Dr. Johanna O'Day, PhD Focused on biomechanics and how they can help relieve Parkinson's patients in the very near future, Dr. O'Day of Stanford's Wu Tsai Human Performance Alliance, elaborates on her past work and how she sees bioengineering becoming a larger pillar in future PD research. https://profiles.stanford.edu/johanna-oday _____________________ Special thanks to Dr. Paulina Gonzalez-Latapi, Dr. Daniel G. Di Luca, Dr. Ece Bayram, and Dr. Johanna O'Day for their insights and their marvelous contributions to the Parkinsonism and Movement Disorder field. Thank you!

    31 min
  2. Parkinson's Pill Bottle | with Brian Alldridge

    07/10/2022

    Parkinson's Pill Bottle | with Brian Alldridge

    Brian Alldridge is a renowned reality TV videographer. Brian designed a pill bottle after watching a Parkinson's patients' TikTok where he struggled to grab one of the medications in the container. Brian decided to fix that. The invention has 3 parts and an easy-to-use function for those with any movement impairment. Alldridge explains the motivation behind it, how to use it, and its impact with me. With a little CAD, a ton of searching, and a huge support from the internet, the TremorSafe bottle flourished. Tune in to hear more about the bottle and where you can find it. Ideas are a dime a dozen but this one ended up being a major dime.  For more information about the TremorSafe pill bottle: https://www.tremorsafe.com/ Special thanks to Brian for the wonderful conversation.

    30 min

  3. 07/06/2022

    F**K PARKINSONS | with Steve Goldstein

    Journalistic instinct and versed writer, New York native and Bethesda resident, Steve Goldstein retraces his story in this 2019 episode. He shares what it means to fight Parkinson's head-on until it gives up. A strategy he uses? Boxing. Listen more to find out how Steve punches his pain away and what he does to stay motivated on and off the ring. Special thanks to Steve for being one of my favorite interviews to date.  Read more on Steve's article regarding Title Boxing Classes here: https://bethesdamagazine.com/bethesda-magazine/january-february-2019/glove-up-parkinsons/

    19 min

  4. 06/28/2022

    We're all mortals | with Ece Bayram, MD, PhD

    Motor exams, neurological scales, cognitive testing, and observational interviews. We hear over and over how important Parkinson's research is. But what about the people behind it? She vouches to make every patient smile -- at least once. You'll hear from Dr. Ece Bayram. A gravitating force in her field with extensive expertise in movement disorders, neurodegeneration, and Parkinson's Disease, Dr. Bayram talks about the ins-and-outs of participant research and how she's reshaping the archetype of clinical research. Tune in to find out more about how she breaks barriers for patients that mean the most. Special thanks to Ece, her curiosity, and her research.  Read publications and more about Dr. Bayram here: https://profiles.ucsd.edu/ece.bayram

    26 min

  5. 06/12/2022

    One more knot | with Steven Heller

    Contributing writer for the New York Times, Visual Arts Director, author, designer, and expert in pop culture, Steven Heller is a force to be reckoned with. In this episode, Steven details his experience with Parkinson's Disease, unveils his own life experience, and grasps with reflections he's  undergone since his diagnosis. To the fullest extent, Heller reveals his story in a truthful, insightful dialogue.  Special thanks to Steven for allowing me to speak with him.  To learn more about Mr. Heller, visit his website here: http://www.hellerbooks.com/docs/about.html

    33 min

  6. 06/11/2022

    Parkinson's Disease Story Exchange (Trailer)

    Parkinson's Disease Story Exchange

    1 min

Trailer

About

The Parkinson's Disease Story Exchange uplifts unheard voices in and outside of the Parkinson's community. Listen to real conversations where filters are thrown out the door. All so that you can know the nitty, gritty, and the in-between about this disease.

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