The Alzheimer's Podcast

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.

This episode was recorded May 19, 2020. Phil and Christy discuss what's happening in long-term care in the US and Canada during the pandemic and posit why it's so abysmal. Plus, they manage to work into the conversation Michael Jordan, Wayne Gretzky, Jerry Rice, Jeff Bezos, Kathy Bates, and Adam and Eve. Full transcript at DementiaSherpa.com/episode139. All links in the transcript.

We're fast-forwarding through the editing queue to bring you this episode recorded June 23, 2020. We wanted to make this episode as timely as possible for a few reasons:   Phil Gutis (our Assistant Sherpa on The Alzheimer's Podcast) and his husband Tim Weaver once again did a Longest Day event on behalf of The Alzheimer's Association. The Longest Day was last weekend, but the fundraising doesn't close out until August 31, 2020, so there's still time to donate here.   Phil describes their Longest Day experience as Laurel & Hardy Throw a Party, and gives up the details. There's a lot of laughing in this episode, and sometimes--like if we've been lucky enough to survive 2020 so far--we just need to laugh.   We finally got Tim on the show!! He provides some great insight and what I believe are three of the most valuable pieces of advice a dementia care partner will ever get. Full transcript + show notes at https://www.dementiasherpa.com/episode138  

This episode was recorded April 27, 2020. Just like last week's episode, we again talk about the value of a human life. It's a recurring theme on The Alzheimer's Podcast, because we believe that when others don't see people living with a dementia diagnosis as having value simply because they're our fellow humans, then every human life can be devalued. And when that happens, inhumane treatment can be justified based on any criteria those in power come up with in the moment. Obviously, we had no idea when we recorded this episode that it would be released during a time of global protests demanding the perfectly reasonable acknowledgement that Black lives matter. We are in no way looking to co-opt a movement or diminish the message that Black lives matter. Rather, we stand in solidarity. Full transcript: https://dementiasherpa.com/episode137 *NEW* LIVE Master Class Training "Dementia Care Basics: Caring for Your Person at Home." Details: https://dementiasherpa.com/masterclass/  

This episode was recorded April 20th, 2020. At one point, Phil refers to protesters, and who he's talking about are the armed white people who showed up at statehouses wanting to get a haircut, go to the movies, open up the economy, that sort of thing.  So, I don't want there to be any confusion because of when this episode is being released (in early June) about who Phil is talking about.  One other warning: this episode, I think, really reflects the anger and frustration that Phil and I were feeling in mid-April. Many of you have told me how much you appreciate me putting a positive message out into the world. But I think there's also a time to not only have righteous anger but to share it with the rest of the world.  Finally, unlike virtually every other episode of The Alzheimer's Podcast, this episode is marked "E," because I use the s-word, once. Full transcript at DementiaSherpa.com/episode136.

Show notes + transcript: DementiaSherpa.com/episode135. This week, I got author and blogger Donna Thomson to come back to the show. She has so much wisdom to share about solitude, a timely topic in this time of Covid-19. Although many states are “reopening” right now—and we've got more on that in upcoming episodes—Donna's thoughts on solitude and isolation are relevant to care partners no matter what's going on in the outside world. Donna is an exceptionally experienced care partner, having first become one as a teenager. As you'd expect, she's developed an enormous amount of wisdom along the way.  You'll also no doubt note the empathy and compassion that comes through loud and clear in the soothing sound of Donna's voice. The mother of two grown children, one of whom has severe disabilities, Donna also cared for her mother who had a diagnosis of dementia and passed away in the summer of 2018 at the age of 96. Donna is the co-author (with Dr. Zachary White) of The Unexpected Journey of Caring: The Transformation from Loved One to Caregiver (Rowman & Littlefield, 2019) and author of The Four Walls of My Freedom: Lessons I've Learned From a Life of Caregiving (The House of Anansi Press, 2014). She blogs regularly at The Caregivers' Living Room and teaches caregivers at McMaster University in Ontario, Canada.  

Full show notes with transcript + links: https://DementiaSherpa.com/episode134 Christy gets to talk with the extraordinarily-generous-with-her-time caregiver, author and activist Donna Thomson about a wide range of topics that affect care partners, including: Caregiving literacy + advocacy Anosognosia Hyperintolerance + "slices of a pie" The masks we wear        The hidden opportunities in care partnering When your family isn't who you think they should be Intentional caregiving (vs "head on fire" caregiving) The importance of what we focus on as care partners And so much more!   Donna is an exceptionally experienced care partner, having first become one as a teenager. As you'd expect, she's developed an enormous amount of wisdom along the way.  You'll also no doubt note the empathy and compassion that comes through loud and clear in the soothing sound of Donna's voice. The mother of two grown children, one of whom has severe disabilities, Donna also cared for her mother who had a diagnosis of dementia and passed away in the summer of 2018 at the age of 96. Donna is the co-author (with Dr. Zachary White) of The Unexpected Journey of Caring: The Transformation from Loved One to Caregiver (Rowman & Littlefield, 2019) and author of The Four Walls of My Freedom: Lessons I've Learned From a Life of Caregiving (The House of Anansi Press, 2014). She blogs regularly at The Caregivers' Living Room and teaches caregivers at McMaster University in Ontario, Canada.  

Full transcript + links: DementiaSherpa.com/Episode133 Let's just have some fun, already! If you're looking for ideas of what to do with your person while you're living la vida (stir) loca, this is the episode for you. Julie Bigham, founder of Joy-Filled Visits and a former activities director, shares ideas and tells a moving story about a woman able to engage more than her family thought possible.

Christy offers a cheap, low-tech way to make sure your person knows you're thinking of them with this bonus tip.

Show notes + links: DementiaSherpa.com/Episode132. Phil Gutis, our Assistant Sherpa, and Christy discuss what life is like right now in the shadow of Covid-19, including ways families can stay connected with their person who lives in long-term care. Complimentary Strategy Call for Dementia Care Partners March Master Class Training: Reducing Your Chances of Developing Dementia

If you've been following the story of coronavirus spread over the past several weeks, you may be freaked out right about now. News came out over the weekend that a long-term care community in the Pacific Northwest has been impacted, with both residents and staff affected. As I'm recording this the morning of March 3, 2020, 4 residents in that nursing home have died.  So even if you're a cool kitten not prone to panic, you may have questions about how the spread of coronavirus could affect your person. Complete transcript + links: DementiaSherpa.com/Episode131.

In this episode, Phil Gutis, our Assistant Sherpa, and Christy discuss situations that show respect for your person and opportunities to bring The Good Stuff.  Show notes at DementiaSherpa.com/episode130.   Complimentary Strategy Call for Dementia Care Partners

In this episode, Christy talks with Joan Corella of the Providence ElderPlace PACE Program, A care model that combines medical care, long-term care, and social services all in one program, about how vital this program can be for caregivers and those living with dementia. Show notes at DementiaSherpa.com/episode129. Complimentary Strategy Call for Dementia Care Partners

Show notes: DementiaSherpa.com/episode128. In this episode, Christy & Phil discuss some ways to improve sleep for your person.    

In this episode, Dr. Deborah Bier chats with The Dementia Sherpa about learning what is needed to be an effective caregiver and letting go of the shame that mistakes can often bring up, so we can continue to be there for our person, bringing the good stuff.  As always, there are show notes at DementiaSherpa.com/episode127. LIVE Master Class Training Series #2

Show notes at DementiaSherpa.com/Episode126. Christy Turner, AKA The Dementia Sherpa, and Phil Gutis, our Assistant Sherpa, get candid about a wide range of topics: Phil's depression His use of Ambien during his working years His aunt, who is showing signs of cognitive impairment Familial and environmental risk factors for developing neurodegenerative diseases The possibility of a cure (or at least an effective treatment similar to the HIV cocktail) in the next 10 years The relative value of seeing a neurologist pre- and post-diagnosis The Dementia Sherpa's February 2020 LIVE Master Class Training: Advance Care Planning

In this episode, Beth Friesen, Certified Dementia Practitioner, placement agent, and author of “I Love Someone with Dementia…So Why Am I Losing My Mind? A Practical Guide,” talks with Christy about how her experiences during her mother's battle with dementia ignited a passion within her to help others, as well as the importance of getting legal documents in order. Show notes at DementiaSherpa.com/episode125. REPLAY: The Dementia Sherpa's LIVE Master Class Training: Creating Your Care Partnering Plan for 2020

In this episode, Phil Gutis, our Assistant Sherpa, gives an update on his childhood friend, Elaine, and sparks a conversation with Christy about autonomy and end of life choices for people living with dementia. Show notes at DementiaSherpa.com/episode124. The Dementia Sherpa's LIVE Master Class Training: Creating Your Care Partnering Plan for 2020

In This Episode "I walked out of that conference feeling like there are a lot of really smart people trying to find the solution to this disease. So that was the optimistic part." The Alzheimer's Podcast is back for 2020! We're back with part 2 of the conversation between me and Phil Gutis about his trip to the Clinical Trials on Alzheimer's Disease conference, or CTAD, in December 2019. The conference was a super big deal because Biogen presented on why they now believe aducanumab is a drug worth pursuing after all. For more on the roller coaster of this story, check out the show notes, where we link to the real-life drama.  Meanwhile, back to Phil. We affectionately call him our Assistant Sherpa here on the show but he's actually kind of a big deal. Phil covered the conference for Being Patient, and was likely the only person present who'd been part of the aducanumab clinical trials.  In this episode, we may sound cynical but I think we'd both prefer to call it truthful.  We discuss the financial implications of a successful drug treatment and recap the changes Phil made in 2019 and the impact they've had on his ability to navigate life.  We pick up just after Phil said he believes a realistic timeline for FDA approval is likely to be 5 years. (Listen to part 1, episode 122 here.) Enroll now: The Dementia Sherpa's LIVE Master Class Training: Creating Your Care Partnering Plan for 2020 Book now: Complimentary Caregiver Strategy call with Christy  

"The ability to continue driving for another year or two, or to continue working for another year or two, or to continue living--you know, it's basically living, right? It's doing the activities of life--is much more meaningful and important than a couple of points on a memory test." Phil Gutis reports on the Biogen presentation at CTAD and what it means for people living with an Alzheimer's diagnosis in the first part of this two-part episode. Thank you to our sponsors, Home Instead Senior Care-East Portland & Clackamas County, and Dementia Sherpa.

Phil and Christy react to the news Biogen is resurrecting aducanumab, the most promising drug in development in years, after failing a futility study in March.  We wonder what's really going on here: is aducanumab the magic bullet or false hope? In this episode, we discuss: The timeline of aducanumab Phil's very personal stake in the news Christy recalls when Namenda (memantine), the last FDA-approved dementia medication, hit the market and the effect it had on two of her residents The existing four FDA-approved dementia medications The impact using dementia medications can have on a person's quality of life A different take on how we measure costs related to dementia The amyloid hypothesis and the role of environment and genetics The really important thing Phil feels like he got out of the news Thank you to our sponsors, Home Instead Senior Care-East Portland + Clackamas County and Dementia Sherpa.

Show notes + links: DementiaSherpa.com/Episode120. Christy chats with Dr. Jane M. Mullins, who shares her research on the magic created by multisensory holiday reminiscence in people living with dementia and their care partners.  Thank you to our sponsor, Home Instead Senior Care-East Portland & Clackamas County!  Dr. Jane M. Mullins is a dementia nurse consultant who has devoted over 25 years to the study and practice of dementia care. Through listening to and supporting people and their families during their diagnosis in memory clinics, caring for them in hospital and in care homes, she has helped throughout all of the stages of their condition. Jane has uncovered certain common features that may help caregivers and the people they care for find better ways of coping. Her practice experience is backed up by expert knowledge gained from keeping up to date with research with people who have dementia and their caregivers. This includes her Ph.D. which explores multisensory ways of communication and how to stay connected with loved ones living with dementia. She is currently a part time nurse lecturer at Cardiff University.

Christy chats with Alex Leff, director of Now and Again, an upcoming documentary on his grandfather's struggle with Alzheimer's and the adventure Alex and his brother go on to find their grandfather's lost memory. Just four days to go on the Now and Again documentary Seed & Spark campaign! Help out here. Follow on Facebook, Twitter, Instagram. #nowandagaindoc #nowandagain Thank you to our sponsor, Home Instead Senior Care-East Portland + Clackamas County! 2020 Planner for Dementia Care Partners with Pro Tips from The Dementia Sherpa is now available! 

Transcript + links: DementiaSherpa.com/Episode118. Thank you to our sponsor, Home Instead Senior Care-East Portland + Clackamas County! In this episode, Phil wonders if spending time with a person living with Alzheimer's or other neurodegenerative disorder is much like navigating a field of landmines while trying to keep both legs intact. Christy pushes back, wondering why folks think it's a big ask for the person with a healthy brain to make some adjustments. Plus, Christy announces she's finally turned a four-year idea into reality.

Transcript + links: DementiaSherpa.com/Episode117. Thank you to our sponsor, Home Instead Senior Care-East Portland + Clackamas County, for serving up dependable, warm-hearted home care to families in the east metro area! Phil Gutis, a regular guest we affectionately call our Assistant Sherpa, was diagnosed with younger onset Alzheimer's disease almost four years ago.  For the past year or so, Phil has really been focusing on his health, and it's been paying off...kinda, sorta. In episode 116, Phil reveals he didn't qualify for a study because he did too well on the cognitive testing.  In this episode, we're looking at the flip side of that, talking more about what's going well, how that feels for him, and maybe most important for our listeners, what he's doing.  Phil calls it resisting Alzheimer's, but he's a former New York Times reporter and ACLU spokesperson, so he's cleverly given it a social media-friendly label: #ALZResistance. Listen in to swipe ideas for your own person and yourself, and welcome to the #ALZResistance.

Transcript + links: DementiaSherpa.com/Episode116. Thank you to our sponsor, Home Instead Senior Care-East Portland + Clackamas County! Phil Gutis, our Assistant Sherpa, shares why he didn't get into a clinical study we both thought he was a shoo-in for, and why--in his practiced opinion--memory tests are kinda dumb.

Links at DementiaSherpa.com/Episode115. Thank you to our sponsor, Home Instead Senior Care-East Portland + Clackamas County! In this episode, Phil Gutis, our Assistant Sherpa, and I discuss a listener's email question about how to handle his person not wanting others to know about the diagnosis. Plus, we end with Phil sharing how a college friend helped him remember their favorite class.

Transcript + links: DementiaSherpa.com/Episode114. Thank you to our sponsor, Home Instead Senior Care-East Portland + Clackamas County! "The incidents are coming faster and faster and you know, even though I often say that I feel just fine, you know, I'm clearly not just fine." - Phil Gutis In this episode, Phil and I continue the conversation we started in episode 113, where Phil talks about getting on the wrong train in Philadelphia and the rising panic he initially felt in trying to figure out how the train ended up at the wrong stop.  As he says in that episode, it took 16 hours before he realized that he got on the wrong train in Philadelphia, rather than the train going to the wrong station. Here, we talk about the aftermath of that incident, and what it means to Phil.

Transcript + links: DementiaSherpa.com/Episode113. Thank you to our sponsor, Home Instead Senior Care-East Portland and Clackamas County! In this episode: "And then, of course, once I realized what my brain had done to me, I got very upset and sat at my computer and cried a lot because...it just didn't make any sense to me. It just doesn't make any sense to me. It still doesn't make any sense to me." -Phil Gutis  Phil Gutis, our Assistant Sherpa, and I discuss how a recent train trip to Philadelphia went sideways for him. Plus, Phil questions why, once I figured out what happened, I didn't immediately tell him. 

Transcript + links: DementiaSherpa.com/Episode112. Thank you to our sponsor! Home Instead Senior Care-East Portland and Clackamas County. People with Alzheimer's and other neurodegenerative disorders are typically portrayed in media as elderly white people. On television, it's often a white man in the emergency department, accompanied by his wife, sometimes with a frantic son along for the ride.      When media depicts or represents only one type of person or family, we know, logically, we're missing the larger fact-based picture. It's important for providers to appreciate and understand who we're serving, which definitely includes historically marginalized communities. And that leads me to the community we're discussing today: the LGBTQ community.  I was lucky enough to land an expert guest, Jerry Mallicoat, who explains what, exactly, the terms cultural competency and cultural humility mean, and why it's vital providers consistently demonstrate both. Although Jerry's focus is on the LGBTQ community, I think the broader message is applicable to every marginalized community and person. 

Transcript & links: DementiaSherpa.com/Episode111. Thank you to our sponsor! Home Instead Senior Care-East Portland & Clackamas County has well-trained, knowledgeable CAREgivers offering dependable, warm-hearted home care.    I was invited to be part of the speaker faculty for the Inaugural Building Bridges of Hope & Connecting Circles of Care Dementia Cruise & Conference this past April.  That's where I met Phil Gutis, who became our Assistant Sherpa here on the show. And that's also where I had the great good fortune of meeting Steve & Debbie Giblin. Steve is Debbie's husband and care partner. He was an inspiration to every care partner I talked to. Debbie has a smile that lights up a room. She's living with a diagnosis of Posterior Cortical Atrophy, or PCA for short. According to the Alzheimer's Association, “It is not known whether posterior cortical atrophy is a unique disease or a possible variant form of Alzheimer's disease.” Debbie has given permission for Steve to talk about her particular diagnosis because it's something that most people haven't heard of before...including the professionals she sought help from when her first symptoms appeared.

Transcript & links: DementiaSherpa.com/Episode110. Thank you to our sponsor Home Instead Senior Care-East Portland & Clackamas County!  This episode is part two of the conversation Phil and I start in episode 109: The Randy Rainbow Debacle. That episode gives you the backstory and context to fully appreciate this episode, so if you haven't already, go check out episode 109 first. As our Phil Phans know, he's a columnist for MemoryWell. In his most recent column, Phil shares more of his thoughts and feelings about the Randy Rainbow-related incident that sparked these two podcast episodes, plus he adds a sort of post script to the story that gave me a great big smile. So, definitely go check out Phil's column on MemoryWell. And as usual, everything is linked up in the show notes for your convenience. Just go over to DementiaSherpa.com/episode110. Meanwhile, in this episode, Phil says we go “off the rails.” I prefer to think of it as a little color commentary. Where else can you tune in to get an insider's thoughts on living with a neurodegenerative disorder, plus catch the host do a weird yet oddly appropriate mash up of Hank Kingsley and Joey Tribbiani--and then have it all tied together with a big purple bow at the end? Enjoy!

Transcript with links: DementiaSherpa.com/Episode109. "So, I had another little incident with memory, the vast memory hole, which left me crying in a restaurant." Because that's how Phil Gutis, our Assistant Sherpa, started our conversation this past Wednesday, I knew it was going to be a tough story to hear.  Several days later, I'm still astounded by Phil's generosity in sharing the story. My hope is our discussion of how the experience felt for Phil will give care partners insight into what it's like for a person living with a neurodegenerative disorder. Pay close attention to the answers Phil gives starting around the 5:19 mark during this story. He's giving voice to what your person may not still be able to tell you. Although Phil's story is a visceral gut-punch, I believe it will also help care partners learn some different ways to respond so that you can have positive interactions with your person that you both feel good about. Thank you to our sponsor, Home Instead-East Portland and Clackamas County!

Show notes: DementiaSherpa.com/episode108. Because being a dementia care partner is often a thankless role, sometimes you just need a little sunshine from your Dementia Sherpa ;)  

Transcript + resources: DementiaSherpa.com/episode107. Phil Gutis, our Assistant Sherpa, and I wonder if we're making a difference or shouting into the wind, and Phil drops a truth bomb for care partners. 

Transcript + Show Notes: DementiaSherpa.com/Episode106. Good news, Phil Phans! Phil Gutis, our Assistant Sherpa, is with us today. Beyond giving you a little peek inside what it's like to be part of a clinical trial, Phil shares specific things he does that help him feel his best and the effect a busy day has on him. As you're listening, keep in mind that Phil is very early in the disease process and highly functional. He's able to successfully navigate a whole lot of life independently, relying on his husband, Tim, for emotional and logistics support akin to any marriage. Then consider how your person experiences a very busy day and the effect it has on them--even if they're not able to tell you about it.

Transcript: DementiaSherpa.com/episode105. Our guest is Dr Elizabeth Shulman. She's author of the book Sanctuary in the Midst of Alzheimer's. Elizabeth has a Doctorate of Ministry and Counseling and she has, I think, a very compelling personal experience that led her to doing this kind of work. 

Transcript: DementiaSherpa.com/Episode104. Jamie Tyrone was first on the show in episode 100: Enjoy Us in the Moment, where she used her own experiences to offer some creative, real-life examples of how to hit it out of the park as a care partner. Several years ago, Jamie was exhibiting symptoms of MS and given the diagnosis. But something still seemed amiss. She was determined to unravel the mystery, and that's where we pick up Jamie's remarkable and inspiring story in this episode.  A trained nurse and former marketing executive, Jamie's now a full time advocate for Alzheimer's research. She has two copies of the ApoE-4 gene, which puts her at a 91% lifetime risk of getting Alzheimer's disease, along with 2% of the US population.  Jamie is the co-author a new book with Dr Marwan Sabbagh, Fighting for My Life: How to Thrive in the Shadow of Alzheimer's.  She is also the CEO and founder of Beating Alzheimer's by Embracing Science (B.A.B.E.S.), a nonprofit organization that raises funds and awareness for Alzheimer's research.  In addition, Jamie is a founding member of Women Against Alzheimer's and has contributed recommendations to the National Alzheimer's Project Act Advisory Council.  

Transcript & free advocacy course: DementiaSherpa.com/Episode103. Phil and Christy chat about a solution for when driving is no longer possible, leading to an explanation of the 'addition before subtraction' technique.  Phil watched a documentary that terrifed him, teeing up Christy for a soapbox moment that winds up with tips for how families can be an effective advocate for their person.

Transcript at DementiaSherpa.com/Episode102. We start by answering a listener's excellent question about the fine line between helping and creating learned dependency, which leads to Phil to talking about a symptom that you may not know is related to Alzheimer's and a few other types of neurodegenerative disorders.  Phil also tells about "doing a little bit of writing for...a website called the MemoryWell, where people are hired to write stories for folks who have dementia" and a situation he encountered related to that: "[She] is 94 and in a memory care facility. [Her daughter] was describing her mother's life and how...she doesn't remember that her husband has passed away and she's always asking about him.” So we also discuss that situation and ways to handle it in this episode. 

Transcript + show notes: DementiaSherpa.com/Episode101. June is Alzheimer's and Brain Awareness Month, and it's also Pride Month. That lead Phil Gutis, our Assistant Sherpa, to the idea of doing an episode about coming out...with Alzheimer's.  One of the things Phil and I talk about a lot is stigma and shame, and how the words we use can help or hurt. Unfortunately, those are issues both the gay community and the Alzheimer's and other neurodegenerative disorders community know way too much about from first-hand experience. I've recently been trying to decipher the keys to success in the battles for effective treatment for HIV/AIDS and also for marriage equality.  How can we in neurodegenerative disorders community replicate those successes? That's the question I'm asking until my brain comes up with answers. If you'd like to lend your brain power to the cause, just email Info@DementiaSherpa.com with your ideas. We can continue the conversation in future episodes and, I hope, figure out how to end this scourge sooner rather than later. And if that sounds very pie-in-the-sky, that's okay. I'm old enough to remember when figuring out HIV/AIDS was, too. 2 quick things before we jump in. This episode was recorded before The Longest Day. So a great big shout-out to listeners of The Alzheimer's Podcast and members of the Dementia Sherpa tribe who supported our Assistant Sherpa in his and Tim's Row2Remember team. With the help of you and many, many others, Phil and Tim's team raised $11,100!  Second thing: fundraising is exhausting. And Phil was not just sitting there looking pretty. He was working it. Phil asked me to mention this in the show notes, so you'd understand when he has a couple tongue-twistery moments.

Transcript and show notes at DementiaSherpa.com/Episode100. Jamie Tyrone's great-grandmother, grandmother, and two great-uncles all died of Alzheimer's disease. Jamie has two copies of the ApoE-4 gene, which puts her at a 91% lifetime risk of getting Alzheimer's disease. At the time she found out, her dad was living with Alzheimer's disease. Jamie didn't let any of that slow her down. A trained nurse and former marketing executive, she's now a full time advocate for Alzheimer's research. She's the CEO and founder of Beating Alzheimer's by Embracing Science (B.A.B.E.S) and has a new book out, Fighting for My Life: How to Thrive in the Shadow of Alzheimer's. In this episode, Jamie shares some of what she's learned as a care partner to her dad and a friend living with Dementia with Lewy Bodies.