Brain Talk | Being Patient for Alzheimer's & dementia patients & caregivers

About Brain Talk | Being Patient for Alzheimer's & dementia patients & caregivers

Being Patient is the leading online community for Alzheimer's, dementia patients, caregivers. We talk to experts about Alzheimer's news, advice, stories and support! Visit www.beingpatient.com for the latest Alzheimer's news and researches!

Publisher

Being Patient

Category

science

Language

en

Explicit

No

First episode

9 Mar 2021

Latest episode

13 Oct 2026

Latest episodes

143 episodes in the feed.

1. 

   13 Oct 2026

   Diagnosed With Alzheimer’s at 46: Inherited Alzheimer’s and the PSEN1 Gene | Francisco Rios and Zahydie Burgos

   Journey to Diagnosis is a Being Patient series sponsored by Eisai. As with all of our reporting, the sponsor has no role in choosing guests, shaping questions, or reviewing content before publication.Eisai: https://www.eisai.com/index.htmlJourney to Diagnosis: https://beingpatient.com/journey-to-diagnosis/ For more than a year, Francisco “Pako” Rios experienced memory lapses, difficulty concentrating, disrupted sleep, and changes in his behavior. His symptoms were initially attributed to depression and anxiety. But Rios, whose father, grandfather, and great-grandmother all had Alzheimer’s disease, suspected something more serious.In 2022, an MRI ordered for an unrelated reason revealed brain atrophy, prompting further testing. Rios was diagnosed with early-onset Alzheimer’s at age 46. Genetic testing later identified a mutation in the PSEN1 gene, which is associated with dominantly inherited Alzheimer’s disease, a rare form of the condition that can affect people decades before the typical age of onset.In this conversation with Being Patient founder Deborah Kan, Rios and his wife and care partner, Zahydie Burgos, discussed the challenges of a diagnosis at a young age, the lack of support services for people living with younger-onset dementia, and Rios’ participation in a clinical trial combining the Alzheimer’s drug lecanemab (Leqembi) with an experimental anti-tau therapy. Despite side effects, Rios explained why he remains committed to the trial and what he hopes his participation will mean for future generations.----If you loved this Live Talk, visit our website to find more of our Alzheimer’s coverage and subscribe to our newsletter: https://www.beingpatient.com/Follow Being Patient: Twitter: https://twitter.com/Being_Patient_Instagram: https://www.instagram.com/beingpatientvoices/Facebook: https://www.facebook.com/beingpatientalzheimersLinkedIn: https://www.linkedin.com/company/being-patientBeing Patient is an editorially independent journalism outlet for news and reporting about brain health, cognitive science, and neurodegenerative diseases. In our Live Talk series on Facebook, former Wall Street Journal Editor and founder of Being Patient, Deborah Kan, interviews brain health experts and people living with dementia. Check out our latest Live Talks: https://beingpatient.com/live-talks/

2. 

   5 Oct 2026

   What Is Posterior Cortical Atrophy? One Couple's Road to Diagnosis | Scott & Anne Cunningham

   Posterior cortical atrophy is a rare form of Alzheimer's disease that shows up first in vision and spatial processing rather than memory — which is why it is so often missed. Scott Cunningham was a psychiatrist for 40 years. He couldn't cut a board straight. He couldn't assemble a log rack. He stopped being able to read an analog clock, despite a perfect SAT math score. He went through two cataract surgeries before an ophthalmologist realized the problem wasn't his eyes at all. His wife Anne, a social worker, had quietly pieced together what was happening before the MRI confirmed it — a diagnosis the couple first read in a patient portal, before any doctor called. In this conversation with Being Patient founder Deborah Kan, Scott and Anne Cunningham describe the years of subtle signs that preceded his December 2020 diagnosis, why his ApoE4/4 status led his neurologist to advise against anti-amyloid treatment, the gene therapy trial he's now in year three of, and the vision services Anne argues are almost entirely missing from PCA care. They also talk about what has let Scott stay independent — contrast tape, an induction stove, an orange suitcase — and why he still rollerblades every day. Journey to Diagnosis is a Being Patient series sponsored by Eisai. As with all of our reporting, the sponsor has no role in choosing guests, shaping questions, or reviewing content before publication.Eisai: https://www.eisai.com/index.htmlJourney to Diagnosis: https://beingpatient.com/journey-to-diagnosis/ --- If you loved this Live Talk, visit our website to find more of our Alzheimer’s coverage and subscribe to our newsletter: https://www.beingpatient.com/Follow Being Patient: Twitter: https://twitter.com/Being_Patient_Instagram: https://www.instagram.com/beingpatientvoices/Facebook: https://www.facebook.com/beingpatientalzheimersLinkedIn: https://www.linkedin.com/company/being-patientBeing Patient is an editorially independent journalism outlet for news and reporting about brain health, cognitive science, and neurodegenerative diseases. In our Live Talk series on Facebook, former Wall Street Journal Editor and founder of Being Patient, Deborah Kan, interviews brain health experts and people living with dementia. Check out our latest Live Talks: https://beingpatient.com/live-talks/

3. 

   29 Sept 2026

   Four Years to Get a Memory Test: An Early-Onset Alzheimer's Diagnosis at 60 | Sean Terwilliger

   For four years, doctors told Sean Terwilliger he was fine. At 60, after failing a memory screening by a single point, he was diagnosed with early-onset Alzheimer's. Terwilliger moved through three states and four primary care physicians before one finally gave him the MoCA, a 30-point cognitive screening. He failed it by one point — enough to get him to a neurologist, an MRI and a PET scan that showed significant amyloid buildup. The guidance that followed the diagnosis was that his prognosis was eight to 10 years, and that he should come back in two weeks to start infusions. In this conversation with Being Patient's Mark Niu, Terwilliger describes the four-year fight to be tested, his 18 months and 39 infusions of Leqembi, and the p-tau217 blood test that showed he no longer meets the pathology threshold for Alzheimer's — a result that has left him unable to qualify for the clinical trials he now wants to join. He also explains how writing The ALZBlog and his book ALZ Fired Up! brought him out of the despair that followed diagnosis, and why he gave spousal caregivers a name of their own: sisu. Journey to Diagnosis (https://www.beingpatient.com/journey-to-diagnosis/) is a Being Patient series sponsored by Eisai (https://www.eisai.com/index.html). As with all of our reporting, the sponsor has no role in choosing guests, shaping questions, or reviewing content before publication. --- If you loved this Live Talk, visit our website to find more of our Alzheimer’s coverage and subscribe to our newsletter: https://www.beingpatient.com/Follow Being Patient: Twitter: https://twitter.com/Being_Patient_Instagram: https://www.instagram.com/beingpatientvoices/Facebook: https://www.facebook.com/beingpatientalzheimersLinkedIn: https://www.linkedin.com/company/being-patientBeing Patient is an editorially independent journalism outlet for news and reporting about brain health, cognitive science, and neurodegenerative diseases. In our Live Talk series on Facebook, former Wall Street Journal Editor and founder of Being Patient, Deborah Kan, interviews brain health experts and people living with dementia. Check out our latest Live Talks: https://beingpatient.com/live-talks/

Reach and audience

Public platform figures. Ratings count people who left a rating, not total listeners.

Apple Podcasts (US)

4.7 / 5

12 ratings

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Guest appearances

Does not typically book guests

Based on episode analysis; this does not confirm that the show is currently accepting guests.

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