I'm Dying to Tell You

So grateful to have this conversation with Kerry Goode, former NFL (National Football League) player who was diagnosed with ALS in 2015.  Kerry was a running back at the University of Alabama, Tampa Bay Buccaneers, Miami Dolphins and later a strength and conditioning coach also in the NFL.  So he knew something was wrong when he couldn’t pick up a box. Here, Kerry shares what he's feeling about having been so physically strong, being able to bench press 400 pounds & squat 800 pounds to now not even being able to pick up a pencil.  He lets us know how he's able to maintain a positive attitude and find great joy in life despite losing his ability to walk, talk and even breathe on his own.  It’s no surprise that Kerry is now giving back through his own organization, The Goode Foundation whose mission is to support patients and families affected by ALS and fund ALS research.  We talk about the motivation to share his journey with ALS and his faith in the book that he typed with his eyes after ALS took his ability to move his fingers, “Goode and Faithful Servant: The Kerry Goode Story.”  Our entire conversation here was recorded with Kerry using his eyes to type his answers to my questions.  It’s remarkable and so is Kerry.  Thanks for listening in and sharing.  Hugs, Lorrihttps://www.goodefoundation.org/I am so incredibly grateful that you are here. It means the world to me! Thank you. Follow and see what's coming next: Instagram, Facebook, Twitter, TikTok, LinkedIn.

In this episode, I sit down with ALS advocate Bob Scannell, whose personal journey through his wife's battle with ALS has fueled his mission to raise awareness about the disease. After enduring a series of misdiagnoses before finally receiving an ALS diagnosis, Bob is now at the forefront of a campaign to educate both the healthcare industry and the public on the critical importance of early and accurate ALS diagnosis. Join us as Bob shares his powerful story and discusses the urgent need for improved ALS awareness and diagnostic practices. Thank you for listening in. Hugs, LorriRequest an I AM ALS panel: https://www.iamals.org/action/request-a-panel/Email Bob Scannell: [email protected] am so incredibly grateful that you are here. It means the world to me! Thank you. Follow and see what's coming next: Instagram, Facebook, Twitter, TikTok, LinkedIn.

In this compelling podcast episode, I delve into an inspiring conversation with Sam Telgkamp, a resilient 27-year-old battling ALS. Despite her inability to speak due to the progressive nature of the disease, we explore her journey and outlook on life with grace and gratitude at the forefront. Sam's unwavering positivity and resilience shine through as she discusses the challenges of living with a terminal illness, navigating her speech device solely with her eyes. Her perspective offers a poignant reminder of the power of perspective and the resilience of the human spirit in the face of adversity.  Sam shares her heart & experiences through her blog which can be read here:https://stayingloudly.wordpress.com/. Thank you for listening & sharing with a friend. Hugs, Lorri I am so incredibly grateful that you are here. It means the world to me! Thank you. Follow and see what's coming next: Instagram, Facebook, Twitter, TikTok, LinkedIn.

In this episode of  ""I'm Dying To Tell You,"" I meet up with the resilient Sara Bennett, from Columbus, Ohio.  At just 36 years old, Sara was confronted with a devastating diagnosis: ALS.  In a candid and deeply moving conversation, Sara opens up about her extraordinary journey, bravely navigating the intricate balance of life as a mother to two young sons, aged 5 and 7, while grappling with the harsh reality of a terminal illness. With unwavering courage, Sara shares her poignant insights, offering listeners a profound glimpse into the resilience of the human spirit in the face of unimaginable challenges.  Sara shares how she told her young boys about her diagnosis and how she is navigating parenthood in this new season.  Sara also shares how she is working with a death doula to assist her with end-of-life.  This episode is a reminder of the indomitable strength found within us all.  Follow Sara:  https://www.instagram.com/theanandapivot/Thank you for listening in.  Hugs, LorriI am so incredibly grateful that you are here. It means the world to me! Thank you. Follow and see what's coming next: Instagram, Facebook, Twitter, TikTok, LinkedIn.

In the first episode of Season 5, I delve into the inspiring outreach of ALS Family of Faith with guests Dawn Delaloye and Tanya Hageman. Listen in as they illuminate the profound impact of their nonprofit organization, dedicated to providing free emotional and spiritual support to individuals and families living with ALS. From patients battling the disease to their devoted caregivers and even friends and family, ALS Family of Faith extends a compassionate hand to all affected by this devastating disease. In a time often overshadowed by darkness and isolation, Dawn and Tanya shed light on the transformative power of their partnership with the ALS community, offering a beacon of hope amidst the heavy burdens of this incurable illness. ALS Family of Faith was founded by Steve Cochlan, who was diagnosed with ALS in 2019.  Steve recognized that there wasn't an organized effort offering spiritual support that he was seeking, so he started one himself.  Listen in to this example of love and community and thank you for sharing with a friend.  Hugs, LorriI am so incredibly grateful that you are here. It means the world to me! Thank you. Follow and see what's coming next: Instagram, Facebook, Twitter, TikTok, LinkedIn.

When I was initially diagnosed with ALS, I was given the typical prognosis of 2-5 years to live. That was 20 years ago.  Today, alongside my two sons, Paul and Christian, we reflect on this journey, answer listener questions, and explore the lessons learned along the way.  I answer your questions about life with ALS, my thoughts on the future and advice to others finding themselves in the face of adversity.  Then, I find out what questions my sons have for me after 20 years with ALS.  Although their questions were tough to answer, I think it was good for all of us to discuss.  I’m incredibly grateful for these bonus years since only 5% of ALS patients live longer than 20 years.  Join us for an intimate and candid conversation as we commemorate this significant milestone and look towards the future with hope & gratitude.  Help celebrate with me by sharing this episode with a friend and leaving a review wherever you listen.  Thank you for your incredible support.  Hugs, LorriI am so incredibly grateful that you are here. It means the world to me! Thank you. Follow and see what's coming next: Instagram, Facebook, Twitter, TikTok, LinkedIn.

In this episode I chat with Juliet Taylor & Tim Abeska who each lost spouse to ALS. They met in a virtual support group for widow & widowers.   Realizing they lived in the same area and had common interests, they met for coffee and their relationship grew from there.  Today they encourage each other to love & honor their late spouse, enjoy life and be active ALS advocates to help end ALS.   Here, Juliet & Tim share about their late spouses, Jeff Sarnacki & Mary Ann Abeska.  We talk about how they are supporting each other’s grief journey and what advice they have for others who are experiencing loss.  It's incredible that both Juliet & Tim have jumped back in to the ALS community as key advocates.  Together, they are the co-chairs of the I AM ALS Community Outreach Team, which helps bring others into our fight for a cure.  Juliet writes a beautiful column for ALS News Today. Listen in to this hopeful chat and share with a friend.  Thanks for listening.  Hugs, Lorri I am so incredibly grateful that you are here. It means the world to me! Thank you. Follow and see what's coming next: Instagram, Facebook, Twitter, TikTok, LinkedIn.

Here you’ll meet Tony and Karen Vick.  Tony, a brave U.S. Veteran, has been living with ALS for the past 6 years.  Karen, his dedicated wife, serves as his full-time caregiver, showcasing the strength of their bond.  Despite facing the challenges of ALS, Tony and Karen lead a fulfilling life and share their journey on Karen's Instagram account, https://www.instagram.com/thekaregiver/.  After realizing how many young caregivers are out there, they decided to share more on the day-to-day realities, triumphs, and tribulations of living with ALS.  They hope to help other caregivers and individuals grappling with illnesses like ALS.  Tune in to discover how they extend their reach and provide support through their engaging weekly LIVE sessions on Instagram @thekaregiver, where they update their journey, answer questions, and offer encouragement.  Both Tony & Karen are returning guests on this podcast.  We get an update on how Tony is doing and his thoughts on his positive perspective.  Tony also shares advice for other veterans living with ALS.  Listen in as I delve into the inspiring story of Tony and Karen Vick, demonstrating that even in the face of adversity, love, resilience, and community can thrive.  Thank you for listening in and sharing with a friend.  Hugs, LorriI am so incredibly grateful that you are here. It means the world to me! Thank you. Follow and see what's coming next: Instagram, Facebook, Twitter, TikTok, LinkedIn.

In this episode, I talk about having gratitude even during hard times.  I recorded this on Thanksgiving Day.  Thanksgiving encourages us to pause and express gratitude for the positive aspects of our lives.  For me, It always fosters a sense of gratitude, reflection, and appreciation for the blessings and relationships in my life.  This morning I woke up being extra grateful for all I have, for the relationships that I am a part of and for the extra time that I have been given.  Here, I hope to encourage you to seek out GRATITUDE every single day.  I also pass along some things to consider being grateful for even when life gets tough. I share some ways to stir up gratitude as well.  At the end of this episode, I talk about Giving Tuesday and how it provides a unique opportunity to express gratitude through acts of kindness and generosity.  I am incredibly grateful for each of you.  Thank you for being here and letting me share my thoughts with you.  Hugs, LorriI am so incredibly grateful that you are here. It means the world to me! Thank you. Follow and see what's coming next: Instagram, Facebook, Twitter, TikTok, LinkedIn.

Here I chat with Amanda Stevens, wife & caregiver to Eric Stevens – former NFL player & L.A. Firefighter, both introduced to us on The Ellen DeGeneres Show in 2019.   Amanda and Eric were married only one month when Eric was diagnosed with ALS at a young 29 years old.  We fell in love with this young couple as they appeared on the Ellen show three times and even were on to announce that they were expecting a baby.  In the past 4 years since receiving Eric's ALS diagnosis, Amanda has dedicated her life to caring for her husband and their daughter.   Amanda and Eric have also been inspired to help others through their non profit called AxeALS Foundation.  Their mission is to raise awareness and funding for ALS treatments and clinical trials; to help ALS patients and their families live as full and normal lives as possible and to support ALS research. In this episode, Amanda shares her journey, motivation and updates on Eric and life with ALS.   Tune in for this sweet encouragement in the face of huge adversity.  Thank you for listening and sharing this episode with a friend.  Hugs, LorriAxeALS: https://axeals.org/I am so incredibly grateful that you are here. It means the world to me! Thank you. Follow and see what's coming next: Instagram, Facebook, Twitter, TikTok, LinkedIn.