In our Season 10 finale, Alyssa describes the FTD journey with her father, Tommy - starting from her perspective at 11 years-old. She weaves us through her memories of her father's strange behavior - and the long road to finding answers. This story covers so much about family dynamics - but also what a healing journey can look like. And the unbelievable things that happen in life that we just can't explain. Thank you, Alyssa for sharing your story with us. You are an incredible woman. Keep fight...
Jul 01, 2025•1 hr 32 min•Season 10Ep. 13
Dr. Adam a professor of Interpersonal & Family Communication (and host of one of Maria's favorite podcasts The Sister Wives Professor ) is here for what may be our favorite expert chat of all time. An open + honest conversation about life, family + grief. We talk a lot about family estrangement, family roles, what it means for someone to "be the glue" and so much more. Thank you, Thank you, Thank you to Adam for all of his love and attention to our community + thank you for coming on to shar...
Jun 24, 2025•1 hr 4 min•Season 11Ep. 12
Today's episode features Lauren - who tells the story of her mother Pat's journey with Alzheimer's - PPA and lung cancer. Lauren describes noticing her mother's speech becoming jumbled in August 2022, which led to a challenging path to diagnosis involving family dynamics between her, her two sisters, and their father. Lauren so astutely recounts how navigating the family dynamics helped her recognize their family patterns - and ultimately helped her realize her own strength in showing up for dif...
Jun 17, 2025•54 min•Season 10Ep. 11
Jackie von Salm, a chemist and Chief Scientific Officer at Psilera, shares her father Terry's journey with FTD. We loved how Jackie was so raw + honest about family dynamics, becoming Terry's POA in her 20s, and how she learned how to be direct + honest in how she felt and what she needed while caregiving. You can learn more about what she's up to at Psilera here . You can also hear us chat all about their Research Summit this year on Patreon - along with an extended version of this episode. Pat...
Jun 10, 2025•56 min•Season 10Ep. 10
This week's episode dives into the legal side of family dynamics with Elder Law Attorney Jerry Rothkoff. We cover all of our burning legal questions - from POA to Guardianship to Medicaid and Medicare. Jerry gives lots of wisdom on how family dynamics play a role in his job and how he navigates it all. We want to thank Jerry for coming on the podcast but also for supporting our community with so much care and compassion. You can learn more about Rothkoff Law Group here . The association Jerry me...
Jun 03, 2025•50 min•Season 10Ep. 9
Our inaugural in-law guest on the podcast, Amber, eloquently discusses her experiences as a mother, wife, and caregiver to her father-in-law, Robert. She covers a range of topics, from navigating Medicaid to ensuring Robert's safety—not only in a physical sense but also on social media. It's clear that she has truly gone above and beyond in her role. We thoroughly enjoyed our conversation with Amber and can't wait to hear your thoughts! --- Special thank you to today's sponsor AVIADOBIO . An ext...
May 20, 2025•49 min•Season 10Ep. 8
Christy found a way to navigate her father's FTD diagnosis with poise -- From fighting for a diagnosis to navigating 4 different Memory Care facilities... Christy seemed to go above and beyond to provide the best loving care for her dad. What was so apparent to us - was how naturally she adapted to his reality - always keeping his personhood at the forefront of her mind. But it was not without so much sacrifice and grief - sharing how deeply the disease impacted her family. But ultimately we saw...
May 13, 2025•51 min•Season 10Ep. 7
Today's episode feels like a conversation between 3 old friends. Genessee, openly shares her unique experience with her mother's complex mental health issues and her eventual diagnosis of frontotemporal dementia (FTD). For the first time we really dive into the topic of infertility -- and what it's like to navigate a fertility journey alongside the grief and challenges having a loved one with FTD. We loved this conversation - and the special peice of Holly at the end. Thank you, Genessee for sha...
May 06, 2025•58 min•Season 10Ep. 6
Continuing on our theme of family dynamics - a long-time listener and friend of the podcast, CJ, comes forward to share her story. We talk a lot about navigating motherhood alongside her father Russ' FTD journey, with all the family dynamics and challenges that come along the way. CJ tells her story with so much love and honesty, it is sure to touch your heart. Thank you, CJ, for sharing your story with us. If you're curious about anything RM, we'd love to connect with you on PATREON , our w...
Apr 29, 2025•1 hr 6 min•Season 10Ep. 5
A young son and family member from NYT Magazine's “ The Vanishing Family ” speaks with us on today's episode. In what may be one of our most powerful interviews, Ansel shares the origins of his mother Peggy's journey with FTD and their family's discovery of the MAPT FTD mutation through their incredible efforts to contribute to FTD research. You can read Ansel's recent piece A Hand of Poker and Our Family Curse published in Medium here . Learn more about Ansel's advocacy at CureMAPTFTD here . ...
Apr 15, 2025•57 min•Season 10Ep. 4
A beautiful blended family-- Janet's husband Mike was diagnosed with FTD during the pandemic -- and she shares with us how she navigates the heartache and grief through the beautiful blended family her and Mike formed together. Janet thought it was important this season featured a story of how families can come together too -- and we're so glad. Thank you, Janet for sharing your story with us and the whole RM community. If you're curious about anything RM, we'd love to connect with you on PATRE...
Apr 07, 2025•52 min•Season 10Ep. 3
We plunge head first into family dynamics with our extraordinary guest, Niki. Niki shares the story of her father, Dominic, detailing his journey with FTD - including the difficulties of balancing the reality and gravity of the diagnosis alongside the overwhelming decisions for his care. All while navigating family conflicts, and of course, the emotional and psychological toll it takes. Niki talks all about her journey as a new mom and new entrepreneur while navigating it all. We bond over the s...
Apr 01, 2025•1 hr 12 min•Season 10Ep. 2
SEASON 10! WHAT? 10 seasons in and we're finally ready to dive into the topic of Family Dynamics. Before diving into our guests stories, our first episode has some personal updates (Rachael's puppy golden retriever BENNY!), our hopes + dreams for the new season, some hearty laughs + more. ------------------- For all things RM, join us over on PATREON , visit our website www.remembermeftd.com or follow us on Instagram ! Interested in our Family Dynamics class in May? Shoot us an email a...
Mar 25, 2025•52 min•Season 10Ep. 1
Surprise... another BONUS ep! The grief convo in Season 9, we felt, really needed to include the genetic piece of this disease, and so we are HONORED to have Erynn Gordon - a board certified genetic counselor with 20 years of clinical, research, and industry experience with us to dive into this topic. Erynn SO thoughtfully breaks down genetics and testing and chats with us all about a new resource the Progranulin Information Navigator. Let us know what you think of this bonus episode and please ...
Feb 05, 2025•51 min•Season 9Ep. 15
Surprise! We're back with a Season 9 Bonus Episode, and if you are so inclined, you can now WATCH this episode on Youtube . We sat down with our friends Esther Kane, MSN, RN-CDP, Support & Education Director and Sarah Lopata, Support Services Manager at the Association for Frontotemporal Degeneration to discuss the unique grief experience of FTD and many of its layers. Let us know on instagram what you think of this episode + the topics covered. Please share this episode with someone you thi...
Jan 28, 2025•1 hr 9 min•Season 9Ep. 14
In our Season 9 finale we hear from our friend Anna, wife to the incredible, confident, loving girl-Dad, Craig. Anna's strength and her love is so inspiring, we hope it fills you with hope and comfort as you navigate the holidays. ------- An extended version of this amazing episode is available now on our Re-Members only Patreon . A special thank you to all of our guests, sponsors + listeners this season. We are so deeply thankful + grateful for you. Hope this season you can find some time to #a...
Dec 24, 2024•1 hr 5 min•Season 9Ep. 13
Anticipatory Grief, Complicated Grief, Disenfranchised Grief... we cover it all + Rachael's explanation for her fascination with grief and all things *bittersweet* We're nearing the end of season 9! Thank you for all of your support this season + beyond! Please don't forget to check out our Patreon for bonus episodes + more! And follow us on Instagram . Please check out the amazing sponsors mentioned in this episode: PROGRANULIN INFORMATION NAVIGATOR A resource for FTD clinical trial...
Dec 17, 2024•51 min•Season 9Ep. 12
In Part 2 of this powerful story we discuss Kayla's coming back to her mom in the final year's of Diana's life. Kayla tells us all about her grief journey and her hopes for her future. Make sure you listen t o Part 1 first! Thank you Kayla for sharing your story. --- *Trigger warning: This episode discusses physical and verbal abuse. Please check out the amazing sponsors mentioned in this episode: PROGRANULIN INFORMATION NAVIGATOR A resource for FTD clinical trial and genetic testing...
Dec 10, 2024•45 min•Season 9Ep. 11
Here is part one of an episode we weren't sure what to title - and after you listen, we think you'll understand why. Kayla recounts and her 20 year experience witnessing her mom Diana's dramatic FTD journey -- starting from when she was just 8 years old. This is such an important episode and we hope it gets to the people who need to hear it. Stay tuned for part 2 dropping later this week. Thank you, Kayla for sharing your story. *Trigger warning: This episode discusses physical and verbal abuse....
Dec 03, 2024•43 min•Season 9Ep. 10
Today's episode is told by Liz, who was 12 years old when her father passed away from FTD-ALS. Her perspective was both fascinating and inspiring and we felt so honored to hold space for her and her dad, David. We hope this episode of love and resilience helps carry you through Thanksgiving week. Take good care. Please send this episode to someone you think needs to hear it. Please check out the amazing sponsors mentioned in this episode: PROGRANULIN INFORMATION NAVIGATOR A resource for ...
Nov 26, 2024•56 min•Season 9Ep. 9
Today's episode is the first one this season told from the spouses perspective... and Allyson is such a special spouse to her husband Evan. From misdiagnosis of adult onset ADHD to the final diagnosis of FTD was a long, long journey. But Allyson's love for Evan shines throughout. This is a very special episode that is so raw and honest about the awfulness of this disease..but also such a beautiful example of love and commitment. We hope this episode finds someone who needs to hear it! Please che...
Nov 12, 2024•52 min•Season 9Ep. 8
Ready to dive into all the feels? This may be our favorite convo on grief to date. In today's episode Aisha tells us about her mother's journey with FTD - and because we know Aisha, we felt like we were able to dive deep into all the things we wish people knew about our grief journeys. Thank you Aisha for sharing your story with us! We hope this episode reaches someone who needs to hear it, so please share with a friend! Please check out the amazing sponsors mentioned in this episode: PROGRANU...
Nov 05, 2024•57 min•Season 9Ep. 7
Long-time listener and "Re-member" Liz, shares her father Eugene's journey with FTD. A year plus since his passing, Liz shares her experience with grief, how it manifests for her - and how she keeps herself tethered to the memory of who he was before FTD. We hope this episode helps you feel less alone. Spread the word + share this episode with someone you think needs to hear it today. --- All things Remember Me FTD Community + Advocacy: www.remembermeftd.com | @remembermepodcast ...
Oct 29, 2024•1 hr 3 min•Season 9Ep. 6
This week we have an amazing expert guest - Katie Duncan - a former Hospice Nurse turned End of Life Coach who answers all of our (mostly Rachael’s) burning questions about the dying process. We cover so much - from the death rattle to the death “rally” - thoughts on morphine and more. All in an effort to normalize the conversations on end of life and hopefully help people feel they are not alone on this journey. A very special thank you to Katie for lending her expertise for our community. You ...
Oct 22, 2024•53 min•Season 9Ep. 5
Today's story is about a woman who was very aware of her disease and the fact that she was changing. Told from her daughter Kyra's perspective, Debbie's episode dives into the many unique layers of grief that come with Frontotemporal Dementia. A special thank you to Kyra for so delicately expressing the end of life experience in an effort to help others. We hope this episode helps you feel less alone. Spread the word + share this episode with someone you think needs to hear it today. --- All thi...
Oct 15, 2024•54 min•Season 9Ep. 4
Today's story is shared with the perspective of 20 years in the rear view mirror. Cindy joins us to tell the story of her father Jerry's journey with early onset Alzheimers, which he was diagnosed with in the late 80s. With many years of reflection, Cindy shares her perspectives on her grief journey and her relationship with her sweet Dad. Cindy recently authored a book with reknown FTD expert Dr. Bruce Miller called Finding the Right Words , which chronicals her father's disease but also focuse...
Oct 08, 2024•47 min•Season 9Ep. 3
Victoria openly shares the brutality of anticipatory grief, the unending love she has for her mama and the ways she got to know herself in the darkness. We were blown away. Please share this episode with someone you think needs to hear it. --- All things Remember Me Community + Advocacy: www.remembermeftd.com | @remembermepodcast Holding Space Course Begins 10/7: Register here . Check out our friends at Wake Up Maggie Film . ____ The Remember Me Podcast + Community provides r...
Oct 01, 2024•46 min•Season 9Ep. 2
Our first episode of the season belongs to our new pal Scott. Through an open letter to his grief and the most beautiful love for his Dad, Scott openly recounts the experience of his father Steve's FTD journey - and his magnificent ability to explain what grief feels like will leave you speechless. We hope that Season 9 helps you feel less alone. Spread the word + share this episode with a friend for World FTD Awareness Week. --- All things Remember Me Community + Advocacy: www.remembermeftd.co...
Sep 24, 2024•48 min•Season 9Ep. 1
See what's in store for Remember Me Season 9... Follow us on Instagram for the latest RM news @remembermepodcast or visit us at www.remembermeftd.com ____ The Remember Me Podcast + Community provides resources, connection and understanding for families, caregivers and people affected by Frontotemporal Dementia. For all things RM , join us over on PATREON , visit our website www.remembermeftd.com or follow us on Instagram!...
Sep 17, 2024•6 min
We wrap up our special summer series with a heartfelt conversation on both our time on the road and our time as caregivers. Thank you to HFC for this special opportunity + for supporting our work at Remember Me. Navigating caregiving can be tough, but you don’t have to do it alone. Check out the HFC Caregiver Roadmap here . And don't forget to follow us @remembermepodcast and @wearehfc on Instagram because there's even more content there (+ more to come) about o...
Sep 12, 2024•27 min
