The Alzheimer's Podcast

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

"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

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/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.

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/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 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: 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.