In this episode, we're picking up where we left off in episode 148: "I felt I had been harmed" with guest Jamie Tyrone.  Jamie is the author of Fighting for My Life: How to thrive in the shadow of Alzheimer's. She unexpectedly found out about her risk of developing Alzheimer's disease in the course of genetic testing for something else. As you can imagine, that had a significant impact on her life. More about that in a minute. Meanwhile, fast-forward to February 2021. Phil Gutis, who is our Assistant Sherpa on the show and was diagnosed with young onset Alzheimer's five years ago, landed us an interview with Dr Jason Karlawish, who is both Co-Director of the Penn Memory Center and part of Phil's neurology team.  Dr Karlawish came on the pod to discuss his new book The Problem of Alzheimer's: How Science, Culture, and Politics Turned a Rare Disease into a Crisis and What We Can Do About It. That conversation, featured in episodes 146: "It's a disease of autonomy" and 147: Safe, Social, and Engaged covered a lot of ground, as the title of the book suggests it would. One of the most intriguing ideas in the book is of creating a new diagnosis called "pre-clinical Alzheimer's." Being able to diagnose people with "pre-clinical Alzheimer's" means they wouldn't be showing any symptoms of the disease, but rather that they have genetic markers indicating they'll likely develop it within their lifetime. People could live with a diagnosis of "pre-clinical Alzheimer's" for 30, 40, 50 years prior to showing symptoms. Now, back to Jamie Tyrone. She's been living with the information she has a significantly high risk of developing Alzheimer's disease for 11 years now. So of course we wanted to hear her thoughts on this idea of a "pre-clinical Alzheimer's" diagnosis.  In this episode, Phil and I have a conversation with Jamie about the psychological impact of genetic testing and knowing you have a diagnosis, or are at a significantly higher chance of eventually getting the dreaded diagnosis. The conversation got more real and raw than any of us anticipated. Affiliate disclosure: As an Amazon Associate I earn a small commission from qualifying purchases, at no/zero/none/nada additional cost to you. If you've heard/read/seen something helpful on The Alzheimer's Podcast or the Dementia Sherpa blog or YouTube channel, purchasing through the links on this page is a way to show support---thank you!).

We originally introduced you to our guest today, Jamie Tyrone, in episode 100: Enjoy Us in the Moment. In that episode, Jamie starts walking us through her experience of finding out (by accident!) she has two copies of the ApoE-4 gene, which puts her at a 91% lifetime risk of getting Alzheimer's disease. In addition to having a great-grandmother, grandmother, and two great-uncles who died of Alzheimer's disease, at the time Jamie found out her own genetic information, her dad was living with Alzheimer's disease. This is Jamie's third appearance on the show; episode 104: I Call it a Gift, is part two of the conversation we started in episode 100. We asked her back for a few reasons: number one, we wanted to hear Jamie's take on Dr. Jason Karlawish's idea about introducing a new diagnosis of "pre-clinical Alzheimer's," meaning people could theoretically be diagnosed decades before symptoms become apparent. (Dr. Karlawish talks about this in his new book The Problem of Alzheimer's and in episode 146: "It's a disease of autonomy" and episode 147: Safe, Social, and Engaged.)  As you can no doubt imagine, Jamie is in a position to speak authoritatively on what it's like to learn about and live with that information (which she discusses in detail in her book Fighting for My Life: How to Thrive in the Shadow of Alzheimer's.)   Number two, Jamie is a terrific storyteller---as you'll hear. And number three, Phil and I just adore her! :) This episode is part one of three in our latest conversation with Jamie.  Affiliate disclosure: As an Amazon Associate I earn a small commission from qualifying purchases, at no/zero/none/nada additional cost to you. If you've heard something helpful on The Alzheimer's Podcast, purchasing through these links is a way to show support---thank you!).

This episode is part two of our conversation with Dr. Jason Karlawish, author of the new book The Problem of Alzheimer's: How Science, Culture, and Politics Turned a Rare Disease into a Crisis and What We Can Do About It. The book is out today (February 23, 2021) and is available as both an audio book on audiobooks.com, as well as hardback at your favorite bookseller. If you haven't yet listened to the first part of our conversation with Dr Karlawish in episode 146: It's a Disease of Autonomy, you'll want to hit pause and go back to that episode to catch up before coming back to this episode. Episode 146 explains the historical and political context that got us to where we are today and the way it influenced policy decisions around Alzheimer's disease. This episode focuses more on my main interest: the humans affected, and our relationship with them. Phil Gutis, former New York Times journalist and our Assistant Sherpa on The Alzheimer's Podcast, leads the conversation with Dr. Karlawish. Jason Karlawish is a physician and writer. He researches and writes about issues at the intersections of bioethics, aging, and the neurosciences. He is the author of the novel Open Wound: The Tragic Obsession of Dr. William Beaumont and his essays have appeared in The New York Times, The Washington Post, Forbes, and the Philadelphia Inquirer. He is a Professor of Medicine, Medical Ethics and Health Policy, and Neurology at the University of Pennsylvania and Co-Director of the Penn Memory Center, where he cares for patients. He lives in Philadelphia. Affiliate disclosure: As an Amazon Associate I earn a small commission from qualifying purchases, at no/zero/none/nada additional cost to you. If you've heard or read or seen something helpful on The Alzheimer's Podcast or the Dementia Sherpa blog or YouTube channel, purchasing through these links is a way to show support. Thank you! 🙂

Phil Gutis, former New York Times reporter and our Assistant Sherpa, interviews Dr. Jason Karlawish, author of the new book (available 2/23/21) The Problem of Alzheimer's: How Science, Culture, and Politics Turned a Rare Disease into a Crisis and What We Can Do About It. Dr. Karlawish was very generous with his time, so this episode is part one of two.  In part one, the wide-ranging conversation touches on: Aducanumab How we got to a place that -- 100+ years later -- still doesn't include a cure The concept of "pre-clinical Alzheimer's disease" Public stigma and self-stigma Why Dr. Karlawish believes there's reason to hope in the (relatively) near-term. Links to everything in the show notes at DementiaSherpa.com/episode146.

Mikaela Wilson and Spencer Coombe both started out working as direct care staff in long-term care as teenagers.  While working as direct carers, they had very different experiences. Comparing notes, they came to believe they could create something that would give clients the best experience possible. But they didn't stop there. After co-founding Senior Support Services of Southern Ontario in Hamilton, ON, they also co-authored a book, Any Game for Any Brain, based on what they saw was working for their clients. As Spencer says, "We discovered that when seniors are respected, valued, and cared for, a real difference is created. We wanted to build a business that runs on passion, care and the goal to better someone's life."   Links to order Any Game for Any Brain *and* enter the drawing for one of four complimentary copies generously donated by CIRA Ontario are in the show notes at DementiaSherpa.com/episode145. Now, it's my pleasure to have a conversation with Spencer and Mikaela, two women I'm certain are well on their way to making the world a better place for people living with dementia. 

After reporting on the FDA Advisory Committee meeting for Biogen's phase 3 trial drug aducanumab, Phil started wrestling with two parts of himself: should the guy who believes in science prevail, or the guy living with the diagnosis? This week, picking up where we left off in Episode 143: "We have a friend," Christy throws in her emotional thinking on the topic. More at DementiaSherpa.com/episode144.

This episode was recorded November 9, 2020. Phil and Christy discuss President-Elect Biden and Vice President-Elect Harris's victory and the ongoing impact of COVID-19 within our community. But mostly, Phil wrestles with two parts of himself about what happened last week at the FDA Advisory Committee: should the guy who believes in science prevail, or the guy living with the diagnosis?

In This Episode We've got two top-notch guests on the show today, Alexandra Jamieson and Bob Gower.  They're co-authors of the new book, Radical Alignment: How to Have Game-Changing Conversations That Will Transform Your Business and Your Life. You won't be surprised to hear we're going to focus on the "your life" aspect today. Be sure to listen all the way to the end of the episode for details on a generous special offer if you order the book before August 10, 2020--that's tomorrow!--or pause the episode and head straight over to RadicalAlignmentBook.com right now if you can't stand the suspense.  Alexandra and Bob both have certifications in Applied Positive Psychology and Alexandra is also a Certified Holistic Health Coach.  Alexandra is a success mentor and life & health coach to creative, professional women who want it all. She is the best-selling author of Women, Food & Desire, co-creator and co-star of the Oscar-nominated documentary Super Size Me, and a highly-sought-after wellness expert. Bob helps organizations move faster, create better products, and become happier, more engaging places to work. He is an authority on agile software development, lean theory, and responsive organizational design, and has advised leaders at numerous companies—including GE, Ford, Chanel, PG&E, and Spotify—in creating more effective organizations. He is the author of Agile Business: A Leader's Guide to Harnessing Complexity and speaks regularly on organizational development and leadership. All of that is certainly impressive, but honestly, I'm most excited about their new book, Radical Alignment. Once you hear what they have to say, I think you'll be excited about how it can impact your relationships too. 

This episode is part two of my conversation with Mikaela Wilson and Spencer Coombe, co-founders of Senior Support Services of Southern Ontario and co-authors of Any Game for Any Brain. Last episode, we talked about the Canadian military's report on five nursing homes in Ontario and the awful conditions they found there. As Spencer said, it was shocking, but "we weren't shocked." John Lewis had it exactly right when he said, "When you see something that is not right, not just, not fair, you have a moral obligation to say something, to do something.  Our children and their children will ask, 'What did you do? What did you say?'" And that's exactly why we continue to speak up on The Alzheimer's Podcast. We discuss more problems in long-term care in both Canada and the US in this episode. Bringing problems to the light is the important precursor to solving them, and we talk about some solutions in this episode, too. This episode was recorded July 14, 2020, and btw, is rated explicit because I use 's---show' to describe the US response to the coronavirus. Transcript at DementiaSherpa.com/episode141.

Mikaela Wilson and Spencer Coombe, co-founders of Senior Support Services of Southern Ontario and co-authors of Any Game for Any Brain, discuss the Canadian military's report on abysmal conditions in five Ontario nursing homes.  Full transcript and links at DementiaSherpa.com/episode140.