Remember Me is a podcast created by two moms who became fast friends on Instagram. It features stories of Frontotemporal Dementia (FTD) with a focus on remembering individuals for who they were before the disease. The stories shared are raw, real, and so full of love. We hope it inspires you to "accept the good." Follow us on Instagram @remembermepodcast. Visit our website www.remembermeftd.com
The Remember Me podcast is a truly remarkable resource for families dealing with the long and devastating journey of FTD (Frontotemporal Dementia). Each episode is relatable and offers a sense of connection and understanding to those who are going through this difficult disease. Through their podcast, the hosts, Maria and Rachel, are spreading awareness about FTD and sharing experiences with others in similar situations. One of the best aspects of this podcast is the format in which each guest ends their episode with a letter written by their loved one. This provides a heartfelt and personal touch that resonates deeply with listeners.
Listening to The Remember Me podcast feels like attending a therapy or support group session. It is incredibly therapeutic and provides comfort to those who may feel alone in their experience with FTD. This podcast is a must-listen for anyone with a loved one experiencing FTD, but it can also be relatable for those dealing with other forms of dementia. The hosts have created a platform where people can learn from each other, share their grief, and find solace in knowing they are not alone.
One of the worst aspects of this podcast is that it may be too specific to FTD for some listeners. While FTD is a rare form of dementia, it can make people feel isolated in their struggles. However, the experiences shared on this podcast may not resonate as strongly with those who have loved ones suffering from different types of dementia or illnesses. Additionally, some episodes may be emotionally challenging for listeners due to the rawness and vulnerability expressed by guests.
In conclusion, The Remember Me podcast is an invaluable resource for families affected by FTD. Maria and Rachel have created a space where people can come together as a community to learn from each other's experiences and find support during this difficult journey. The personal touches added through letters written by loved ones make each episode even more meaningful. Despite its specificity to FTD, this podcast reminds us to always accept the good, even in the midst of such a devastating disease.
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 mentions in today's episode is the Life Care Planning Law Firms Association, https://www.lcplfa.org/Special thank you to today's sponsor AVIADOBIO.An extended version of this episode is available now on Patreon - join us www.patreon.com/remembermecommunity - you get exclusive content and it's a great way to support the show!If you're curious about anything RM, we'd love to connect with you on Instagram, and visit our website at www.remembermeftd.com, all the latest updates! ------Remember Me Podcast + Community is here to offer hope + human connection for families, caregivers, and individuals impacted by Frontotemporal Dementia (FTD). Always, always accept the good.
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 extended version of this episode is available now on Patreon - join us www.patreon.com/remembermecommunity - you get exclusive content and it's a great way to support the show!If you're curious about anything RM, we'd love to connect with you on Instagram, and visit our website at www.remembermeftd.com, all the latest updates! ------Remember Me Podcast + Community is here to offer hope + human connection for families, caregivers, and individuals impacted by Frontotemporal Dementia (FTD). Always, always accept the good.
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 Christy's story as the most amazing example for her children of devotion and service - and what we do for the people we love.Thank you for sharing your story with us, Christy. You are an amazing daughter + advocate.An extended version of this episode is available now on Patreon - join us www.patreon.com/remembermecommunity - you get exclusive content and it's a great way to support the show!If you're curious about anything RM, we'd love to connect with you on Instagram, and visit our website at www.remembermeftd.com, all the latest updates! ------Remember Me Podcast + Community is here to offer hope + human connection for families, caregivers, and individuals impacted by Frontotemporal Dementia (FTD). Always, always accept the good.
Today's episode feels like a conversation between 3 old friends. New friend, 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 sharing your story with us!An extended version of this episode is available now on Patreon - join us www.patreon.com/remembermecommunity - you get exclusive content and it's a great way to support the show!If you're curious about anything RM, we'd love to connect with you on Instagram, and visit our website at www.remembermeftd.com, all the latest updates! ------Remember Me Podcast + Community is here to offer hope + human connection for families, caregivers, and individuals impacted by Frontotemporal Dementia (FTD). Always, always accept the good.
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 website at www.remembermeftd.com, or on Instagram for all the latest updates!Remember Me Podcast + Community is here to offer hope + human connection for families, caregivers, and individuals impacted by Frontotemporal Dementia (FTD). Always, always accept the good.
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.Thank you, Ansel for sharing your story with us.------If you're curious about anything RM, we'd love to connect with you on PATREON, our website at www.remembermeftd.com, or on Instagram for all the latest updates!Remember Me Podcast + Community is here to offer hope + human connection for families, caregivers, and individuals impacted by Frontotemporal Dementia (FTD). Always, always accept the good.
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 PATREON, our website at www.remembermeftd.com, or on Instagram for all the latest updates!Thinking about joining our Family Dynamics class in May? We'd be happy to chat—just drop us an email at hello@remembermeftd.com for more details.Remember Me Podcast + Community is here to offer hope + human connection for families, caregivers, and individuals impacted by Frontotemporal Dementia (FTD). Always, always accept the good.
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 survival mode of it all - and learning how to trust your gut, establish boundaries, and find your "people". Thank you to Niki 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 PATREON, our website at www.remembermeftd.com, or on Instagram for all the latest updates!Thinking about joining our Family Dynamics class in May? We'd be happy to chat—just drop us an email at hello@remembermeftd.com for more details.Remember Me Podcast + Community is here to offer hope + human connection for families, caregivers, and individuals impacted by Frontotemporal Dementia (FTD). Always, always accept the good.
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 at hello@remembermeftd.comThe Remember Me Podcast + Community provides resources, connection and understanding for families, caregivers and people affected by Frontotemporal Dementia.
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 check out our sponsor PROGRANULIN INFORMATION NAVIGATOR A resource for FTD clinical trial and genetic testing info. For all things Remember Me, visit remembermeftd.com For bonus content + connection, join us on Patreon www.patreon.com/remembermecommunity --- Remember Me is a podcast that shares stories of people with Frontotemporal Dementia (FTD) and their loved ones. The podcast's goal is to help people accept the good in life and to remember the people they love for who they were before the disease.
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 think needs to hear it! SPECIAL THANK YOU TO THIS EPISODE SPONSOR The Association for Frontotemporal Degeneration Check out their grief resource, Walking with Grief: Loss and the FTD Journey here.
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 #acceptthegood. We are here for you. xx - R+M ------ Please check out some of our amazing sponsors: PROGRANULIN INFORMATION NAVIGATOR A resource for FTD clinical trial and genetic testing info. MAKE TIME WELLNESS (Use code REMEMBERME for 25% off your order -- we personally love the Rhodiola gummies!) ____ 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! --- Support this podcast: https://podcasters.spotify.com/pod/show/rememberme/support
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 and genetic testing info. MAKE TIME WELLNESS (Use code REMEMBERME for 25% off your order -- we personally love the Rhodiola gummies!) ____ 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! --- Support this podcast: https://podcasters.spotify.com/pod/show/rememberme/support
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 story discusses physical and verbal abuse. Please check out the sponsor mentioned in this episode: PROGRANULIN INFORMATION NAVIGATOR A resource for FTD clinical trial and genetic testing info. ____ 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! --- Support this podcast: https://podcasters.spotify.com/pod/show/rememberme/support
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. Please check out the amazing sponsors mentioned in this episode: PROGRANULIN INFORMATION NAVIGATOR A resource for FTD clinical trial and genetic testing info. MAKE TIME WELLNESS (Use code REMEMBERME for 25% off your order -- we personally love the Rhodiola gummies!) ____ 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! --- Support this podcast: https://podcasters.spotify.com/pod/show/rememberme/support
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 FTD clinical trial and genetic testing info. MAKE TIME WELLNESS (Use code REMEMBERME for 25% off your order -- we personally love the Rhodiola gummies!) ____ 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! --- Support this podcast: https://podcasters.spotify.com/pod/show/rememberme/support
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 check out the amazing sponsors mentioned in this episode: PROGRANULIN INFORMATION NAVIGATOR A resource for FTD clinical trial and genetic testing info. MAKE TIME WELLNESS (Use code REMEMBERME for 25% off your order -- we personally love the Rhodiola gummies!) ____ 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! --- Support this podcast: https://podcasters.spotify.com/pod/show/rememberme/support
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: PROGRANULIN INFORMATION NAVIGATOR A resource for FTD clinical trial and genetic testing info. MAKE TIME WELLNESS (Use code REMEMBERME for 25% off your order -- we personally love the Rhodiola gummies!) ------ For all things RM, join us over on PATREON soon, visit our website www.remembermeftd.com or follow us on Instagram! --- Support this podcast: https://podcasters.spotify.com/pod/show/rememberme/support
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 Ways to support our podcast: follow us on Instagram | leave an apple review | join our Re-Members Only group or contact us about partnerships. --- Support this podcast: https://podcasters.spotify.com/pod/show/rememberme/support
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 can find all of Katie's amazing resources here: https://www.deathcarecoach.com Her Instagram: https://www.instagram.com/death.care.coach Her TikTok: https://www.tiktok.com/@death.care.coach Her Book: https://www.amazon.com/dp/B09GTJRQPH Please share this episode with someone you think may need to hear it! And for all things remember me, check out www.remembermeftd.com or follow us on IG @remembermepodcast --- Support this podcast: https://podcasters.spotify.com/pod/show/rememberme/support
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 things Remember Me FTD Community + Advocacy: www.remembermeftd.com | @remembermepodcast Ways to support our podcast: follow us on Instagram | leave an apple review | join our Re-Members Only group or contact us about partnerships. --- Support this podcast: https://podcasters.spotify.com/pod/show/rememberme/support
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 focuses on remembering Jerry for who he was before the diesase (you know we love that!). 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 Ways to support our podcast: follow us on Instagram | leave an apple review | join our Re-Members Only group or contact us about partnerships. Speaking of... Check out our friends at Wake Up Maggie Film. --- Support this podcast: https://podcasters.spotify.com/pod/show/rememberme/support
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. --- Support this podcast: https://podcasters.spotify.com/pod/show/rememberme/support
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.com | @remembermepodcast Holding Space Course Begins 10/7: Register here. Check out our friends at Wake Up Maggie Film. --- Support this podcast: https://podcasters.spotify.com/pod/show/rememberme/support
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 --- Support this podcast: https://podcasters.spotify.com/pod/show/rememberme/support
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 our trip and our heart to hearts in the car about all things caregiving, grief and more. For all things RM: www.remembermeftd.com --- Support this podcast: https://podcasters.spotify.com/pod/show/rememberme/support
We stopped at the ICONIC Amoeba Music... and we had the most tender conversation on music and grief with Co-Owner Karen Pearson. We loved hearing about her beloved Ilene. We could have talked for hours. We hope this episode finds the people who need to hear it so please share! And don't forget to follow us @remembermepodcast and @wearehfc on Instagram because there's even more content there (+ more to come) about our trip and our heart to hearts in the car about all things caregiving, grief and more. Navigating caregiving can be tough, but you don't have to do it alone. Check out the HFC Caregiver Roadmap here. Thank you to HFC for supporting our work! For all things RM: www.remembermeftd.com --- Support this podcast: https://podcasters.spotify.com/pod/show/rememberme/support
A very special sit-down interview with Lauren Miller Rogen, actress, screenwriter, director AND co-founder of HFC alongside her husband Seth. This is a raw + honest conversation between 3 daughters of dementia about the decision to donate their parents brain's to research. We hope this episode finds the people who need to hear it so please share + DON'T FORGET to follow us @remembermepodcast and @wearehfc on Instagram because there's even more content there (+ more to come) about our trip and our heart to hearts in the car about all things caregiving, grief and more. Navigating caregiving can be tough, but you don't have to do it alone. Check out the HFC Caregiver Roadmap here. Thank you to HFC for supporting our work! For all things RM: www.remembermeftd.com --- Support this podcast: https://podcasters.spotify.com/pod/show/rememberme/support
Surprise! Here to share all about being on the road with HFC AKA Hilarity for Charity. Have no idea what we're talking about? Take a seat. From touching brains at UCI Mind to jamming out at Ameoba music to chatting up strangers on Hollywood Boulevard with Bruno the BRAIN PUPPET... we had ourselves an adventure. Buckle up for some fun + stay tuned for some more bonus episodes from our trip. BUT DON'T FORGET to follow us @remembermepodcast and @wearehfc on Instagram because there's even more content there (+ more to come) about our trip and our heart to hearts in the car about all things caregiving, grief and more. Navigating caregiving can be tough, but you don't have to do it alone. Check out the HFC Caregiver Roadmap here. Thank you to HFC for supporting our work! For all things RM: www.remembermeftd.com --- Support this podcast: https://podcasters.spotify.com/pod/show/rememberme/support
Y'all thought we'd stay away this long??? We're baaaccckkk! And this is #2 of the TWO bonus episodes we produced for Season 8! In this episode we tackle the different types of research with Dr. Irwin and Dr. Massimo, the Co-Directors of the Penn FTD Center. Some of the questions we ask: -What are the different types of research? Pharmacological vs. not? -How does brain donation support research? -How do we make research more accessible? Research and clinical trials are such an important aspect of our advocacy and we are thrilled to bring you these 2 episodes stacked full of useful info! Check out the companion blog post for this episode which can be read here full of more resources and info. Special thank you to The AFTD for their collaboration and support of these blogs! -- We want to send big love to the entire Penn FTD Center Team. To sign up for our e-mail visit our website remembermeftd.com. Remember Me is proud to work with LearnFTD, by Alector in working to raise awareness of FTD.. For additional information and resources, visit LearnFTD.com Thank you for supporting our work and for supporting the FTD community. --- Support this podcast: https://podcasters.spotify.com/pod/show/rememberme/support
Y'all thought we'd stay away this long??? We're baaaccckkk! And this is one of TWO bonus episodes we produced for Season 8! In this episode we tackle Clinical Trials with our friend Dahlia Kamel, MS - Clinical Trials Lead at the Penn FTD Center. Some of the questions we ask: -What is a clinical trial? -What do the different phases mean? -What are the considerations for families? Benefit vs. Burden Research and clinical trials are such an important aspect of our advocacy and we are thrilled to bring you these 2 episodes stacked full of useful info! Check out the companion blog post for this episode which can be read here full of more resources and info. Special thank you to The AFTD for their collaboration and support of these blogs! -- We want to send big love to the entire Penn FTD Center Team. To sign up for our e-mail visit our website remembermeftd.com. Remember Me is proud to work with LearnFTD, by Alector in working to raise awareness of FTD.. For additional information and resources, visit LearnFTD.com Thank you for supporting our work and for supporting the FTD community. --- Support this podcast: https://podcasters.spotify.com/pod/show/rememberme/support
In conclusion...it's our season finale... and we're wrapping up this series with our own little bow. Make sure to listen til the very end. And stay in touch, follow us on IG, and keep up to date on all things RM. You never know when you may get an encore *cough* bonus *cough* episode or two... Thank you all for your support and love. Sincerely, R+M -- We want to thank the entire Penn FTD Center Team for jumping in feet first, to our sponsors for their support and to our guests for openly sharing their stories. For more support, resources, events, and all things RM, check out our website www.remembermeftd.com Special thank you to The Association for Frontotemporal Degeneration for their collaboration and support of our blogs this season! You can read up on all the important information + resources we curated together here. Remember Me is proud to work with LearnFTD, by Alector in working to raise awareness of FTD.. For additional information and resources, visit LearnFTD.com Thank you for supporting our work and for supporting the FTD community. --- Support this podcast: https://podcasters.spotify.com/pod/show/rememberme/support
This week we talk all about Guardianship, Power of Attorney, Long Term Care... and other "scary" and confusing terms that can come up when planning care for your loved one. All with the help of Kate, a social worker at the Penn FTD Center. But before that, we dive into our friend Keri's personal experience getting Guardianship for her father, Mark. We recorded this interview last fall, and in February, Mark passed away after a very long journey with FTD. We want to take a minute to acknowledge Keri for the amazing job she did caring for her dad...all while being a wife, raising her little kids and being a fierce FTD advocate. You're a superhero, Keri. -- We want to send big love to the entire Penn FTD Center Team for jumping in feet first, to our sponsors for their support and to our guests for openly sharing their stories. Please see below for links mentioned in the show and a direct link to our informative companion blog for this episode. Each week a new episode will launch Tuesday followed by a blog that will be sent out via email to our subscribers. To sign up for our e-mail visit our website remembermeftd.com. The companion blog to this episode can be read here. Special thank you to The AFTD for their collaboration and support of these blogs! Remember Me is proud to work with LearnFTD, by Alector in working to raise awareness of FTD.. For additional information and resources, visit LearnFTD.com Thank you for supporting our work and for supporting the FTD community. --- Support this podcast: https://podcasters.spotify.com/pod/show/rememberme/support
Are there stages of FTD? What can you "expect"? This week we walk through disease trajectory with Dr. Lauren Massimo (also featured on Episode 2 - Understanding Apathy). Dr. Massimo breaks down what we know, and how she likes to guide families through these discussions. And this week's personal stories come from our friends Lauren and Michelle from the Sister Project. Hear their stories told on Season 1 episodes "June" and "June Pt. 2. This episode is dedicated to June. xx -- We want to send big love to the entire Penn FTD Center Team for jumping in feet first, to our sponsors for their support and to our guests for openly sharing their stories. Please see below for links mentioned in the show and a direct link to our informative companion blog for this episode. Each week a new episode will launch Tuesday followed by a blog that will be sent out via email to our subscribers. To sign up for our e-mail visit our website remembermeftd.com. The companion blog to this episode can be read here. Special thank you to The AFTD for their collaboration and support of these blogs! Remember Me is proud to work with LearnFTD, by Alector in working to raise awareness of FTD.. For additional information and resources, visit LearnFTD.com Thank you for supporting our work and for supporting the FTD community. --- Support this podcast: https://podcasters.spotify.com/pod/show/rememberme/support
This episode revolves around the symptoms of hyperorality -- with a focus on the very common symptom of alcohol use (and abuse). Have a listen as the story meets the science with the lovely Dr. Sara Manning. We want to send big love to the entire Penn FTD Center Team for jumping in feet first, to our sponsors for their support and to our guests for openly sharing their stories. Please see below for links mentioned in the show and a direct link to our informative companion blog for this episode. Each week a new episode will launch Tuesday followed by a blog that will be sent out via email to our subscribers. To sign up for our e-mail visit our website remembermeftd.com. The companion blog to this episode can be read here. Special thank you to The AFTD for their collaboration and support of these blogs! Remember Me is proud to work with LearnFTD, by Alector in working to raise awareness of FTD.. For additional information and resources, visit LearnFTD.com Thank you for supporting our work and for supporting the FTD community. --- Support this podcast: https://podcasters.spotify.com/pod/show/rememberme/support
This week we dive into loss of empathy with Dr. Emma Rhodes. We discuss how this behavior so often reveals itself with birth and death announcements and the episode is filled with personal stories from Rachael, Maria and their friends Lauren and Michelle from the Sister Project (Season 1 - June Pt. 1 & Pt. 2). We want to send big love to the entire Penn FTD Center Team for jumping in feet first, to our sponsors for their support and to our guests for openly sharing their stories. Please see below for links mentioned in the show and a direct link to our informative companion blog for this episode. Each week a new episode will launch Tuesday followed by a blog that will be sent out via email to our subscribers. To sign up for our e-mail visit our website remembermeftd.com. The companion blog to this episode can be read here. Special thank you to The AFTD for their collaboration and support of these blogs! Remember Me is proud to work with LearnFTD, by Alector in working to raise awareness of FTD.. For additional information and resources, visit LearnFTD.com Thank you for supporting our work and for supporting the FTD community. --- Support this podcast: https://podcasters.spotify.com/pod/show/rememberme/support
WE'RE BACK! With a very important interview with the brilliant Corey McMillan, Co-Director of the Penn FTD Center. This week we tackle ALS and FTD - the science behind the connection of the diseases, and the work that is being done to understand more. We want to send big love to the entire Penn FTD Center Team for jumping in feet first, to our sponsors for their support and to our guests for openly sharing their stories. Please see below for links mentioned in the show and a direct link to our informative companion blog for this episode. Each week a new episode will launch Tuesday followed by a blog that will be sent out via email to our subscribers. To sign up for our e-mail visit our website remembermeftd.com. The companion blog to this episode can be read here. Special thank you to The AFTD for their collaboration and support of these blogs! Remember Me is proud to work with LearnFTD, by Alector in working to raise awareness of FTD.. For additional information and resources, visit LearnFTD.com Thank you for supporting our work and for supporting the FTD community. --- Support this podcast: https://podcasters.spotify.com/pod/show/rememberme/support
In our last episode before our mid-season break, we talk to the incredible Dr. Katya Rascovsky about some of the most heartbreaking behaviors in FTD: disinhibition, impulse control and hypersexuality. Katya is absolutely brilliant, kind, and we learned so much from her. We'll see you back here on March 5th, when we'll start to dive into the second half of Season 8. Take time to digest the first 6 episodes of our season with care. Read the blogs for more info. We want to send big love to the entire Penn FTD Center Team for jumping in feet first, to our sponsors for their support and to our guests for openly sharing their stories. Please see below for links mentioned in the show and a direct link to our informative companion blog for this episode. Each week a new episode will launch Tuesday followed by a blog that will be sent out via email to our subscribers. To sign up for our e-mail visit our website remembermeftd.com. The companion blog to this episode can be read here. Special thank you to The AFTD for their collaboration and support of these blogs! And a special thank you to Alector for their boundless work in the neurodegenerative space. Powered by innovation, exquisite science and a determination to make a difference, Alector is working on the discovery and development of potential therapeutic treatments in the hopes of improving the lives of patients, caregivers and families living with neurodegenerative diseases. Remember Me Podcast is appreciative of all your support of our work. --- Support this podcast: https://podcasters.spotify.com/pod/show/rememberme/support
This week we dive into more of Maria's experience with her mom as we discuss Primary Progressive Aphasia (PPA) with Naomi Nevler, MD from the Penn FTD Center. We had the chance to spend time with Naomi on our visit to Penn last fall, and her passion for science and her understanding and compassion for our community, we feel, is all felt through the episode. We hope this helps you gain deeper insight into PPA... and we hope you appreciate some raw and unfiltered thoughts on the subject from your favorite duo. We want to send big love to the entire Penn FTD Center Team for jumping in feet first, to our sponsors for their support and to our guests for openly sharing their stories. Please see below for links mentioned in the show and a direct link to our informative companion blog for this episode. Each week a new episode will launch Tuesday followed by a blog that will be sent out via email to our subscribers. To sign up for our e-mail visit our website remembermeftd.com. The companion blog to this episode can be read here. Special thank you to The AFTD for their collaboration and support of these blogs! And a special thank you to Alector for their boundless work in the neurodegenerative space. Powered by innovation, exquisite science and a determination to make a difference, Alector is working on the discovery and development of potential therapeutic treatments in the hopes of improving the lives of patients, caregivers and families living with neurodegenerative diseases. Remember Me Podcast is appreciative of all your support of our work. --- Support this podcast: https://podcasters.spotify.com/pod/show/rememberme/support
This week we tackle ritualistic behaviors with Gillian Bradley MA, BSN, RN from the Penn FTD Center. Gillian works with caregivers and families to understand ritualistic and compulsive behaviors and come up with strategies for managing them. Ritualistic behaviors can include things like constant pacing, repeating the same phrases, eating the same foods, walking the same routes, and more... and Gillian helps us to understand a little bit more about the patterns of behavior and how it relates to what is happening in the brain as well as shares some learnings from families in clinic. We want to send big love to the entire Penn FTD Center Team for jumping in feet first, to our sponsors for their support and to our guests for openly sharing their stories. Please see below for links mentioned in the show and a direct link to our informative companion blog for this episode. Each week a new episode will launch Tuesday followed by a blog that will be sent out via email to our subscribers. To sign up for our e-mail visit our website remembermeftd.com. The companion blog to this episode can be read here. Special thank you to The AFTD for their collaboration and support of these blogs! And a special thank you to Alector for their boundless work in the neurodegenerative space. Powered by innovation, exquisite science and a determination to make a difference, Alector is working on the discovery and development of potential therapeutic treatments in the hopes of improving the lives of patients, caregivers and families living with neurodegenerative diseases. Remember Me Podcast is appreciative of all your support of our work. --- Support this podcast: https://podcasters.spotify.com/pod/show/rememberme/support
In this episode, we dive into the challenging behaviors of Agression, Agitation... and also Paranoia. Past guest and friend of the podcast, Evan, recalls his experience caring for his mother, and trying to protect her reputation with her best friend. Then we pair the science -- Dr. Jeff Maneval, Neurologist at the Penn FTD Center AND Assistant Professor at UPenn, helps us better understand the "why" behind the challenging behaviors of Aggression, Agitation and Paranioa in FTD... and provides MANY ideas for support. Most importantly, with so much compassion for families effected. We were truly touched by his approach. You will not want to miss the blog associated with this episode here. We want to send big love to the entire Penn FTD Center Team for jumping in feet first, to our sponsors for their support and to our guests for openly sharing their stories. Please see below for links mentioned in the show and a direct link to our informative companion blog for this episode. Each week a new episode will launch Tuesday followed by a blog that will be sent out via email to our subscribers. To sign up for our e-mail visit our website remembermeftd.com. The companion blog to this episode can be read here. Special thank you to The AFTD for their collaboration and support of these blogs! And a special thank you to Alector for their boundless work in the neurodegenerative space. Powered by innovation, exquisite science and a determination to make a difference, Alector is working on the discovery and development of potential therapeutic treatments in the hopes of improving the lives of patients, caregivers and families living with neurodegenerative diseases. Remember Me Podcast is appreciative of all your support of our work. --- Support this podcast: https://podcasters.spotify.com/pod/show/rememberme/support
In this episode, we tackle one of the most common FTD symptoms, apathy. We do this first with Maria's Mother's best friend Melina, who shares the apathy she witnessed at the beginning of Lia's disease that left her feeling so confused. Then we pair the science -- Lauren Massimo, co-director of the Penn FTD Center, and someone who has been studying apathy for nearly 20 years, dives into the different aspects of apathy, some suggestions for coping with it, and just a deeper understanding of this aspect of FTD. We want to send big love to the entire Penn FTD Center Team for jumping in feet first, to our sponsors for their support and to our guests for openly sharing their stories. Please see below for links mentioned in the show and a direct link to our informative companion blog for this episode. Each week a new episode will launch Tuesday followed by a blog that will be sent out via email to our subscribers. To sign up for our e-mail visit our website remembermeftd.com. The companion blog to this episode can be read here. Special thank you to The AFTD for their collaboration and support of these blogs! And a special thank you to Alector for their boundless work in the neurodegenerative space. Powered by innovation, exquisite science and a determination to make a difference, Alector is working on the discovery and development of potential therapeutic treatments in the hopes of improving the lives of patients, caregivers and families living with neurodegenerative diseases. Remember Me Podcast is appreciative of all your support of our work. --- Support this podcast: https://podcasters.spotify.com/pod/show/rememberme/support
We are so thrilled to be back behind the mic for SEASON 8! (I know!! Crazy, right??). We launch this innovative season, where we match the stories to the science, with our new pal – Dr. David Irwin. Dr. Irwin gives us a broad overview of what FTD is and what is generally seen after a diagnosis. Dr. Irwin does a fantastic job explaining what is happening in the brain, where it's happening and why it's happening. What more could we ask for? We want to send big love to the entire Penn FTD Center Team for jumping in feet first, to our sponsors for their support and to our guests for openly sharing their stories. Please see below for links mentioned in the show and a direct link to our informative companion blog for this episode. Each week a new episode will launch Tuesday followed by a blog that will be sent out via email to our subscribers. To sign up for our e-mail visit our website remembermeftd.com. The companion blog to this episode can be read here. Special thank you to The AFTD for their collaboration and support of these blogs! And a special thank you to Alector for their boundless work in the neurodegenerative space. Powered by innovation, exquisite science and a determination to make a difference, Alector is working on the discovery and development of potential therapeutic treatments in the hopes of improving the lives of patients, caregivers and families living with neurodegenerative diseases. Remember Me Podcast is appreciative of all your support of our work. --- Support this podcast: https://podcasters.spotify.com/pod/show/rememberme/support
The tale has finally been told. Tune in to hear all the ins and outs of Remember Me's first tour... and we hope this light bonus episode helps get you through the holiday week. Take care, friends. xx, R+M ... Special thank you to our sponsor, Make Time Wellness! Remember Me listeners get 20% off all products with promo code REMEMBER ME. Shop here: https://maketimewellness.com/ .... For more Remember Me content in between seasons, join us over at instagram @remembermepodcast, join us in Re-Members Only, or checkout our website www.remembermeftd.com --- Support this podcast: https://podcasters.spotify.com/pod/show/rememberme/support
To honor Frank on the 3rd anniversary of his passing, we are re-releasing our very first episode... and with a little intro / checkin from your favorite duo. Stay tuned for a BRAND NEW bonus episode next week... and for all things RM, visit our website remembermeftd.com or our instagram @remembermepodcast... and if you're in need of extra podcasts, we have 40+ bonus exclusive episodes available on Re-Members Only. Re-Members Only helps fuel our business and gives you more of the content you love: remembermeftfd.com/joinro --- Support this podcast: https://podcasters.spotify.com/pod/show/rememberme/support
SURPRISE! We miss you all + we're here to fill you in on our upcoming adventure. We hope you enjoy this BONUS episode! LEARN MORE ABOUT THE TOUR FOR FTD WORLD AWARENESS WEEK: www.remembermeftd.com/tourof3cities Connect with us on IG: @remembermepodcast Learn more about Re-Members Only here. Sign up for our Newsletter here. --- Support this podcast: https://podcasters.spotify.com/pod/show/rememberme/support
We close out season 7 with an update on FTD research from world renown neurologist Dr. Bradley Boeve. Dr. Boeve shares the importance advocacy and awareness in pushing research forward, and what he is hopeful is on the horizon for our community. If you've enjoyed this season, please connect with us on instagram @remembermepodcast, on our website. If you miss us in between seasons, consider supporting our podcast by joining Re-Members Only. There are currently over 30 bonus episodes, events and more. --- Thank you to our sponsor of this episode and Season 7, LearnFTD. LearnFTD is working to raise awareness of gene mutations in FTD and the importance of genetic testing. Visit LearnFTD.com for information and resources on FTD, genetics, and a video providing an overview of genetic testing and counseling. You can also follow LearnFTD on Facebook and Instagram @LearnFTD. --- Remember Me is a podcast created by two moms who became fast friends on Instagram while caregiving for their parents. It features stories of Frontotemporal Dementia - FTD - with a focus on remembering individuals for who they were before the disease. The stories shared are raw, real, and so full of love. We hope it inspires you to "accept the good." "Always, always, accept the good." --- Support this podcast: https://podcasters.spotify.com/pod/show/rememberme/support
Rachael asks herself the question, "Do I want to know my genetic status?" Make sure you listen til the end for a very special clip... and tune in next week for our season finale with Dr. Brad Boeve. Thank you for listening! Let us know what you think of this episode by connecting with us on instagram @remembermepodcast, on our website, or by joining Re-Members Only! --- Thank you to our sponsor of this episode and Season 7, LearnFTD. LearnFTD is working to raise awareness of gene mutations in FTD and the importance of genetic testing. Visit LearnFTD.com for information and resources on FTD, genetics, and a video providing an overview of genetic testing and counseling. You can also follow LearnFTD on Facebook and Instagram @LearnFTD. --- Remember Me is a podcast created by two moms who became fast friends on Instagram while caregiving for their parents. It features stories of Frontotemporal Dementia - FTD - with a focus on remembering individuals for who they were before the disease. The stories shared are raw, real, and so full of love. We hope it inspires you to "accept the good." "Always, always, accept the good." --- Support this podcast: https://podcasters.spotify.com/pod/show/rememberme/support
A physician shares his family's journey with FTD clinical trials. There are so many things to think about when getting involved in research and/or enrolling in a clinical trial, and this listener wanted to share his insight and learnings in case it could help other families navigate this journey. We are so thankful for his insight and his hope... and salute him for caring for so many members of his family with so much grace and positivity. Thank you for listening! Let us know what you think of this episode by connecting with us on instagram @remembermepodcast, on our website, or by joining Re-Members Only! --- Thank you to our sponsor of this episode and Season 7, LearnFTD. LearnFTD is working to raise awareness of gene mutations in FTD and the importance of genetic testing. Visit LearnFTD.com for information and resources on FTD, genetics, and a video providing an overview of genetic testing and counseling. You can also follow LearnFTD on Facebook and Instagram @LearnFTD. --- Remember Me is a podcast created by two moms who became fast friends on Instagram while caregiving for their parents. It features stories of Frontotemporal Dementia - FTD - with a focus on remembering individuals for who they were before the disease. The stories shared are raw, real, and so full of love. We hope it inspires you to "accept the good." "Always, always, accept the good." --- Support this podcast: https://podcasters.spotify.com/pod/show/rememberme/support
Our friend Lauren from across the pond joins us to share her mother Lesley's journey with FTD. Lauren takes us through the search for answers as to her mother's change in behavior - and the parts of her mothers life that made it hard to decipher what the culprit was. She also dives into her journey with genetic testing and the things she thinks about as she awaits her mother's results. Above all, Lauren beautifully illustrates her mother's profound love for her kids and grandkids -- and its clear to see THAT was the most important thing to Lesley. Thank you for listening! Let us know what you think of this episode by connecting with us on instagram @remembermepodcast, on our website, or by joining Re-Members Only! --- Thank you to our sponsor of this episode and Season 7, LearnFTD. LearnFTD is working to raise awareness of gene mutations in FTD and the importance of genetic testing. Visit LearnFTD.com for information and resources on FTD, genetics, and a video providing an overview of genetic testing and counseling. You can also follow LearnFTD on Facebook and Instagram @LearnFTD. --- Remember Me is a podcast created by two moms who became fast friends on Instagram while caregiving for their parents. It features stories of Frontotemporal Dementia - FTD - with a focus on remembering individuals for who they were before the disease. The stories shared are raw, real, and so full of love. We hope it inspires you to "accept the good." "Always, always, accept the good." --- Support this podcast: https://podcasters.spotify.com/pod/show/rememberme/support
Linde returns this week to dive into her journey with genetic testing following her mother Allison's passing. This may be one of the most raw conversations we've ever had on Remember Me. Thank you, Linde for being so vulnerable and honest. This episode is inspiring on so many levels -- and stay tuned for a very special letter at the end. Thank you for listening! Let us know what you think of this episode by connecting with us on instagram @remembermepodcast, on our website, or by joining Re-Members Only! --- Thank you to our sponsor of this episode and Season 7, LearnFTD. LearnFTD is working to raise awareness of gene mutations in FTD and the importance of genetic testing. Visit LearnFTD.com for information and resources on FTD, genetics, and a video providing an overview of genetic testing and counseling. You can also follow LearnFTD on Facebook and Instagram @LearnFTD. --- Remember Me is a podcast created by two moms who became fast friends on Instagram while caregiving for their parents. It features stories of Frontotemporal Dementia - FTD - with a focus on remembering individuals for who they were before the disease. The stories shared are raw, real, and so full of love. We hope it inspires you to "accept the good." "Always, always, accept the good." --- Support this podcast: https://podcasters.spotify.com/pod/show/rememberme/support
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