Brain Talk | Being Patient for Alzheimer's Patients and Caregivers

Being Patient
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  • Updated Biweekly

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!

  1. 3d ago

    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. Oct 5

    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. Sep 29

    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 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. --- 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/

  4. Sep 22

    Is Heading a Soccer Ball Bad for Your Brain? A CTE Researcher Explains

    Does heading a soccer ball damage your brain? Dr. Michael Alosco — clinical neuropsychologist, professor of neurology at Boston University's Chobanian & Avedisian School of Medicine, and co-director of clinical research at the BU CTE Center — explains why chronic traumatic encephalopathy (CTE) risk is driven by the lifetime load of repetitive head impacts, not by how many concussions a player has had. He covers what MRI and blood biomarker studies show about heading and white matter change, why soccer research lags far behind football, whether U.S. Soccer's youth heading limits go far enough, his verdict on Guardian Caps, and what he tells parents who want their kids to keep playing. --- 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:   / being_patient_  Instagram:   / beingpatientvoices  Facebook:   / beingpatientalzheimers  LinkedIn:   / being-patient  Being 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/

  5. Sep 10

    What Is the Best Diet for Brain Health? | Dr. Gil Carvalho

    What we eat can influence our health, but when it comes to protecting the brain and lowering dementia risk, nutrition advice can often feel confusing or contradictory. Which eating patterns have the strongest evidence behind them, and how much can diet really affect cognitive health over time?Dr. Gil Carvalho is a medical doctor and scientist who has a YouTube channel called Nutrition Made Simple, where he reviews the evidence behind popular nutrition claims and explains what the studies do and do not show. His research spans genetics, molecular biology, nutrition, behavior, aging, and neuroscience.In this conversation with Being Patient founder Deborah Kan, Carvalho said the diets linked to better brain health are not one named plan but a pattern: low in ultra-processed foods, high in fiber-rich foods like fruits, vegetables, whole grains, and legumes, and built around healthy fats such as nuts, seeds, fatty fish, and extra virgin olive oil. He explained why the Mediterranean, DASH, and MIND diets are close to interchangeable, what the evidence does and does not support for omega-3s, creatine, MCT oil, ketones, and multivitamins, and why the fear-mongering around seed oils is not supported by research. ----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/

  6. Sep 2

    How to Know When It's Time for More Dementia Care, According to a Long-Term Care Expert | Cory Fosco

    For families caring for a loved one with dementia, deciding when home care is no longer enough is rarely simple. The signs are often gradual — a missed medication here, a stove left on there — and knowing when to seek more support, whether through in-home help, adult day care, or a residential community, can feel overwhelming without a clear framework for how to approach it.Cory Fosco has spent 34 years working in long-term care, with experience in social work, admissions, skilled nursing, senior care, and health care technology. He is the author of “The Question of When: A Practical Guide to Knowing When It’s Time for Assisted Living, Memory Care, or Skilled Nursing.”In this conversation with Being Patient’s Mark Niu, Fosco discussed the safety, medical, and social signals that suggest a person with dementia may need a higher level of care, and why families so often wait until a crisis forces their hand. He broke down the range of care options, from in-home help and adult day care to assisted living, memory care and skilled nursing, and shared what to look for, and which questions to ask, when touring a community. Fosco also addressed common misconceptions about Medicare and long-term care costs, and offered guidance on how families can build a foundation now so they aren’t forced into a rushed decision later.----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/

  7. Aug 25

    The Stimulated Mind: How Everyday Habits Shape Brain Health | Dr. Tommy Wood

    Brain health is shaped by more than age or genetics. The way we exercise, eat, sleep, manage stress, support our metabolism, and stay engaged with the world around us may all influence how well the brain functions over time.Dr. Tommy Wood, associate professor of pediatrics and neuroscience at the University of Washington, studies brain health across the lifespan, from the neurodevelopment of infants born preterm to cognitive aging in older adults. He directs preclinical research in the University of Washington’s Division of Neonatology and is the author of “The Stimulated Mind,” a book on the science of keeping the brain sharp at any age.In this Live Talk with Being Patient founder Deborah Kan, Wood discussed how neuroplasticity works, why the adult brain makes almost no new neurons even as the connections between existing neurons keep changing, and which activities can build cognitive reserve. He also addressed the long-term brain health risks tied to preterm birth and concussion, the supplements with the strongest evidence behind them, and the daily habits, from exercise to sleep to social connection, that he relies on himself.----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/

  8. Aug 18

    What to Remember When You Are Forgetting: Living Well With Dementia | Dr. Zaldy Tan

    A dementia diagnosis can raise difficult questions about what comes next: How do you know what changes to expect? How should families prepare? And how can someone continue to live well as memory loss progresses?Those are some of the questions Dr. Zaldy Tan addresses in his new book, “What to Remember When You’re Forgetting: How to Live and Thrive With Memory Loss, Alzheimer’s and Other Dementias.” Tan, director of the Memory and Healthy Aging Program at Cedars-Sinai Medical Center and a professor at the David Geffen School of Medicine at UCLA, guides readers through the full spectrum of memory change, from recognizing early symptoms and pursuing an evaluation to navigating the different stages of Alzheimer’s and other dementias.In this Live Talk with Being Patient founder Deborah Kan, Tan discussed many of the issues families face, including what new blood-based Alzheimer’s biomarkers can and cannot tell us, how behavioral symptoms such as hallucinations and delusions differ across dementia types, and why getting a precise diagnosis matters. He also explained why preparing early, having conversations about future care, making new memories, and maintaining a sense of purpose can help people and families make the most of the years ahead.----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/

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4.7
out of 5
12 Ratings

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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!

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